The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Joyful's progress
|
|
The Marshall Protocol Study Site > PROGRESS REPORTS [members in study cohort] > Phase One Alumni Forum > Joyful's progress |
|
| Moderated by: Dr Trevor Marshall | ||
| Author | Post | |||||||||
|---|---|---|---|---|---|---|---|---|---|---|
|
Joyful Board Staff 
|
Monday, 29Oct07 ~ Benicar: 110 days ~ Ph1: 51 days ~ Mod Ph1: 45 days ~ ~ Benicar 40mg, q6h ~ 1/2 first abx + 3/8 2nd abx, q48h, together ~ 8am Just a quick note or two. Two major issues I had wanted to see addressed on the MP were resolution of continual dental infections (trying to avoid more $root$canals$) and increasing symptoms from hormonal imbalances. The modified phase 2 antibiotics, even at some of the smallest doses are already going to work in those areas. I did have a bout of immunopathology two weeks ago that had all the appearances of a pair of abscessed teeth. Those symptoms are cleared now. Looking back, the decision to use the NuvaRing for birth control has really worked out for me. Before starting with it I was having 60-80 days between cycles with really heavy bleeding. I know my whole system was struggling to send the right hormonal signals to all the right places. Now, with the use of the Benicar (and a little hormonal help from the NuvaRing) my cycles are regular, manageable and reasonable. I am encouraged by this notable (to me at least) progress even at these very beginning stages of the MP. abx references edited |
|||||||||
|
Deb Grabetz Member in Phase 3 
|
Joyful....Congratulations on seeing progress...It feels good, doesn't it? ...each and every time something amazingly new happens for us.... Almost like wrapped gifts under a tree...a delightful surprise inside each "box" as we begin to heal! |
|||||||||
|
Joyful Board Staff
|
Thanks Deb for the encouraging words! And yes, I am looking forward to many more "gifts" of resolved symptoms. My eyes are blurry less often even now and it seems like some "work" is going on there too, based on my symptoms. Also, my left elbow (tendonitus?) no longer hurts constantly. I can't remember when it stopped hurting constantly, but two nights ago it hurt noticeably for about an hour. When it did, I remembered that it hadn't been hurting for quite a while! ... Another area the MP has been at "work" on, bringing healing when I wasn't even looking or paying attention! |
|||||||||
|
Joyful Board Staff
|
Thursday, 1Nov07 ~ Benicar: 113 days ~ Ph1: 51 days ~ Mod Ph1: 48 days ~ ~ Benicar 40mg, q6h ~ 75mg 1st abx + 60mg 2nd abx, together, q48h ~ 10pm ________________________________________________________________ Light Daylight hours: no exposure. After dark: Friday, low lux, 3 hours; Wednesday, commercially lit; 1 hour. Indoors: low lux, none or 40% NoIRS; computer, brighter areas, 10% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • muscles (tension/pain; mid-back area, when standing or using arms) 4 • sleep (rhythm disrupted, staying up, not getting back to sleep easily) 3 • neuro (low energy, low initiative, low executive function) 3 • sinuses (increased drainage; periodic sneezing; irritation, back of throat) 2 • light sensitivity (10% or 40% NoIRs or none, indoors) 2 • muscles (tension; TMJs) 2 • joints (clicking/popping/pain; transient L elbow, R knee *new*) 2 • skin (peeling off end of nose; couple small sores on nose *new*) 2 • skin rash (red w/ flat rash, neck/throat areas; itchy neck, shins) 1 • dizzy on standing or coming up from bent over position (constant) 1 • dry lips (feeling of dehydration) ________________________________________________________________ Observations ►Difficulty 'turning off' to sleep at bedtime, up to 1am-4am quite a few nights. ►Sleeping more hours (10-16). Feeling tired, low energy even with extra sleep. ►Emotionally and cognitively improving, but no where near 100%. ________________________________________________________________ Something to Celebrate  A very welcome gift of a decent sized bottle of Benicar samples was mailed to me from my doctor's office last week. I am so grateful as this really helped me to stop worrying about my current 'inventory' lasting until next year's insurance plan change. abx references edited |
|||||||||
|
Joyful Board Staff
|
Hi, Because I'm dealing with this symptom (3/10), thought I'd drop in a quck list of definitions of EXECUTIVE FUNCTION that I have pulled together: * A cluster of high-order capacities, which include selective attention, behavioral planning and response inhibition, and the manipulation of information in problem-solving tasks. http://www.nature.com/focus/neurodegen/glossary/ * The ability to manage organization, priority-setting, time management, and decision making. People with Asperger Syndrome and Learning Disabilities frequently have difficulty with executive functioning; it can also be diagnosed in isolation as a specific nonverbal learning disability. access.autistics.org/resources/glossary/main.html * an organizational cognitive brain function that allows for available information to be used in planning, prioritizing, sequencing, self-monitoring, self correcting, inhibiting, initiating, controlling, or altering behavior. http://www.lcmrehabcentre.com/education/glossary2.html * The executive system is a theorised cognitive system in psychology that controls and manages other cognitive processes. It is thought to be involved in processes such as planning, cognitive flexibility, abstract thinking, rule acquisition, and inhibiting inappropriate actions and irrelevant sensory information. en.wikipedia.org/wiki/Executive_function Most days I seem to be fine with self-monitoring and impulse control. It's more of the managing organization, priority-setting, time management, and decision making that seem to be impacted. |
|||||||||
|
Joyful Board Staff
|
Thursday, 8Nov07 ~ Benicar: 120 days ~ Ph1: 51 days ~ Mod Ph1: 55 days ~ ~ Benicar 40mg, q6h ~ 75mg Abx1 + 80mg Abx2, together, q48h ~ 10pm ________________________________________________________________ Light Daylight hours: Out Sat & Mon, 1 hour. Fairly dark/overcast w/ usual precautions. After dark: Friday, brightly lit store, 1 hour. Wednesday, low lux; 1 hour. Indoors: low lux, none or 40% NoIRS; computer, brighter areas, 10% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • muscles (tension/pain; mid-back area, increasing towards later part of day) 4 • sleep (rhythm disrupted, staying up; hydroxyzine assisted with staying asleep) 3 • neuro (low energy/initiative/executive function, short term memory worse) 3 • sinuses (continued drainage; periodic sneezing; back of throat irritation) 2 • light sensitivity (low tolerance for bright indoor lights, fluorescents of any kind) 2 • vision (blurry, started using 1.25+ magnification reading glasses) 2 • neuro (numbness in hands/arms upon awakening) 2 • mouth (TMJs seem to be improperly aligned; some inflammation around molars) 2 • muscles (transient ache in calves) 2 • tendon (left Achilles tendon pain, one time, brief) 2 • abdominal (bladder pressure, Sat; gas, Sat; diarrhea, Mon/Wed) 2 • lymph (swelling below jaws, Thu) 1 • hair (serious shedding on Mon, also seems to have lost it’s ‘body’) 1 • mouth (transient sense of inflammation around right molars) 1 • dizzy on standing or coming up from bent over position (constant) 1 • dry lips (mild feeling of dehydration; getting plenty of fluids) ________________________________________________________________ Observations ►Started this 7 day period tired, low energy/initiative, but this seems to be improving, perhaps due to better sleep patterns. ►Up at 2am-5am some nights. Changed to stopping the use of the computer after 8pm most nights (light/neuro). Also used hydroxyzine to help 5 nights this week. |
|||||||||
|
Anne Scott Member in Phase 3
|
Hi Joyful, hope you are making tolerable progress and hope your symptoms aren't too bad these days.  Anne |
|||||||||
|
Joyful Board Staff
|
Thanks Anne! Seems like the "pulsing" of the antibiotics guarantees an interesting set of variations on the themes of herxing and healing! Today I am experiencing more of the healing side of the coin, for which I am very thankful! I am learning that many of my symptoms improve if I can get myself to spend more time down resting. Hard work, this healing job we have! The pace of "slow and steady" can truly feel like watching paint dry on a wall, but I usually can get myself out of that set of frustrations with a little bit of distraction... like eating food!  I think I would rather have the boring, tolerable herxing, wouldn't you? |
|||||||||
|
Anne Scott Member in Phase 3
|
Hi Joyful, I think I know what you mean by pulsing. I discovered it by accident, trying to fix my runaway IP on a lower dose of Mino. So, now that I'm on the 100mg. of Mino. I have gone back to a 75mg. dosage once or twice, then back up, and now I'm almost (stress on the word "almost") tolerating the 100mg. dosage now. Makes the herxes more tolerable to be sure. Hope I'm understanding your use of the word "pulse." I know the MP website talked about it. Just too lazy/tired to look it up again. Best of wishes! Anne |
|||||||||
|
Joyful Board Staff
|
Anne, I guess we have two different meanings for "pulsing." I think most often people write about "rocking" the dosage when they are going up a level as you mentioned. The moderators could probably supply a link. (I do remember that they don't recommend doing for too many cycles that way.) I was thinking of how we don't take the antibiotics daily, but "pulse" them q48h or q72h, giving our bodies time to clear out the debris from the last "battle" with the bugs before having another round. If we didn't "pulse" the killing of the bugs, I think we would just wear ourselves out and give up! ~Joyful~ (Running on half a brain this week, hope half of this made sense.) |
|||||||||
|
Anne Scott Member in Phase 3
|
Hi Joyful, Ah hah: I was mixing up rocking with pulsing. I see now. I guess I'm mostly "pulsing," with a little rocking in between to keep the IP from going "runaway." Anne See Alternating the ramping schedule |
|||||||||
|
Joyful Board Staff
|
Thursday, 15Nov07 ~ Benicar: 127 days ~ Ph1: 51 days ~ Mod Ph1: 62 days ~ ~ Benicar: 40mg, q8/5/5/6h ~ Abx: 75mg Abx1 + 80mg Abx2, q48h @ 10pm ________________________________________________________________ Light Exposure Other daylight:  Tue and Wed got accidental ‘flash’ of sunlight when shifting curtains. Daylight hours: Out Fri, 1½ hours. 2% NoIRs, hat, zinc, protective gear. 20mg Benicar SL twice. After dark: Out Mon, brightly lit store, ¼ hour. 10% NoIRs, hat. Indoors: low lux, none or 40% NoIRS; computer, brighter areas, 10% or 40% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 5 • muscles (tension/pain; mid-back area, increases w/ use) Mon; 4 • Tue-Thu; 3 • remainder 3 • sleep (rhythm disrupted, staying up; hydroxyzine assisted with staying asleep) Fri-Sun 3 • sinuses (continued drainage; periodic sneezing; back of throat irritation) Everyday 3 • neuro (low initiative/executive function, short term memory) Everyday 2 • mouth (TMJs alignment troubles; some inflammation around molars) Everyday 2 • light sensitivity (low tolerance for bright indoor lights, fluorescents) Everyday 2 • muscles (transient ache in calves, like the beginning of cramps) Sat 1 • dizzy (on standing or coming up from bent over position) Everyday 1 • skin (mild red rash throat/top of chest; few ‘eruptions’ on face/elsewhere) Everyday ________________________________________________________________ Comments > Changed Benicar schedule to try to get 8 hours sleep uninterrupted at night starting last Friday. I am now taking it at 11pm, 7am, 12pm, and 11pm (q8/5/5/6h). This is good for deeper rest, but the immunopathology last night seemed to peak about 7 hours after my 11pm Benicar dose. So, starting today I am going to move the antibiotic schedule from 10pm to 4pm to see if it shifts the IP to earlier in the day when the Benicar doses are closer together. > The back tension hit an all time high last Monday and I ended up taking an ‘emergency nap’ to deal with the pain (and it worked). > Still takes an extra effort to get to sleep at my ‘regular’ time. ________________________________________________________________ Something to Celebrate With my increased attention to protecting from computer light exposure in the evening hours and being sure to stay in bed resting a while before getting up at the start of my day, I have found that I have more energy and joy during the hours that I am up and about. Some good evening meals have been made and enjoyed at our house this week! |
|||||||||
|
Joyful Board Staff
|
Correction! Changed Benicar schedule to try to get 8 hours sleep uninterrupted at night starting last Friday. I am now taking it at 11pm, 7am, 12pm, and 5pm (q8/5/5/6h). See what I mean about the neuro symptoms?  Noted |
|||||||||
|
Joyful Board Staff
|
Wednesday, 21Nov07 ~ Benicar: 133 days ~ Ph1: 51 days ~ Mod Ph1: 68 days ~ ~ Benicar: 40mg, q8/5/5/6h ~ 100mg Abx1 + 80mg Abx2, q48h @ 4pm ________________________________________________________________ Light Exposure Daylight hours: Out Sat, 1 hr. 2% NoIRs, hat, zinc, protective gear. After dark: Out Fri, medium lit, 1 hr. Out Tue/Wed, medium lit, 3 hrs. 10% NoIRs, hat. Indoors: Low lux, none or 40% NoIRS. Computer, brighter areas, 40% or 10% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • hip (pain in left hip with any movement) Tue-Wed:4 4 • neuro (emotionally fragile, low initiative/executive/cognitive function) Everyday 4 • sinuses (continued drainage; periodic sneezing; irritation/sore throat) Fri-Sun:4.Mon-Wed:3 3 • muscles (tension/pain; mid-back area, increases w/ use) Fri:3 Sat-Tue:1 Wed:3 3 • light sensitivity (low tolerance for bright indoor lights, fluorescents) Everyday 3 • sleep (rhythm disrupted, staying up) Fri:3 Sat:1 Sun-Tue:3 We:2 3 • joints (TMJs, alignment does not seem to be working right) Fri:1 Sat:3 Sun-Wed:2 3 • mouth (some inflammation around molars, painful to chew) Fri:1 Sat:3 Sun:2 Mon-Wed:1 NEW: 2 • scents (very uncomfortable to be around, find myself avoiding chemical smells) 1 • vision (geodesic patterns in field of vision) Sun-Mon:1 ________________________________________________________________ Comments > Last week I tried moving the antibiotic schedule from 10pm to 4pm to see if it shifted the IP to a better part of the day. I found it hard to sleep deeply on this schedule. Next week I am going to move from taking the antibiotics at 4pm to 7am and see if this works better for my schedule. > Started to get UTI symptoms on Sunday, but symptoms are almost all gone now. > The tension in my back seemed to be decreasing through most of the week, but now is increasing again today. > New immunopathology symptom starting yesterday. Pain in left hip with any movement. Symptom cleared after 400mg Ibuprofen this afternoon. > Interesting occasional new visual effects going beyond the basic after-image kind. Brain must be struggling with sensory integration or something. ________________________________________________________________ Something to Celebrate Increase in 1st antibiotic has not lead to any increase in skin symptoms (so far). This is really great because this is what got me into this modified phase 1 track in the first place. I am very hopeful that if I keep this slow and steady pace, I will be able to get through all the levels without any intolerable skin symptoms. ~ Here's hoping! ~ Last edited on Wed Apr 9th, 2008 05:49 by |
|||||||||
|
Joyful Board Staff
|
Today I am remembering how very THANKFUL |
|||||||||
|
Joyful Board Staff
|
Wednesday, 28Nov07 ~ Benicar: 140 days ~ Ph1: 51 days ~ Mod Ph1: 75 days ~ ~ Benicar: 40mg, q8/5/5/6h ~ 100mg Abx1 + 100mg Abx2, q48h @ 7am ________________________________________________________________ Light Exposure Outside, daylight: Fri, looking out back door a few times to supervise the cutting down of a pine tree in yard for a Christmas tree. 10% NoIRs. Indoors, natural light: None. Indoors, not @ home: Fri, medium lit, 3 hrs. 10% NoIRs, hat. Mon, well lit, 2 hrs. 40% NoIRs. Tue, medium lit Dr’s Office, 1 hr. 40% NoIRs. Wed, low lux, 1 hr. 40% NoIRs. Indoors, @ home: Low lux, none or 40% NoIRs. Computer, brighter areas, 40% or 10% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • muscles (tension/pain; mid-back area, stiff/achy feeling all day) Thu-Fri:2 Sat-Mon:4 Tue-Wed:3 3 • neuro (emotionally fragile, low initiative/executive/cognitive function) Thu:3 Fri-Mon:2 Tue-Wed:1 3 • sinuses (continued drainage; periodic sneezing; irritation/sore throat) Fri-Tue:3 Thu, Wed:2 3 • light sensitivity (low tolerance for bright indoor lights, fluorescents) Thu-Mon:3 Tue-Wed:1 2 • sleep (rhythm disrupted, up until 2am-3am, total 9-12 hrs sleep) Everyday 2 • skin (mild rash throat/top of chest; couple ‘eruptions,’ various locations, itchy shins) Everyday 2 • abdominal (kidney/bladder; reduced flow, bubbles/cloudy urine) Fri-Tue:2 Thu, Wed:1 ________________________________________________________________ Comments > This week I moved the antibiotic schedule from 4pm to 7am q48h, and I am much happier with this schedule. The first set of symptoms occur within an hour of taking the antibiotics while I am still in bed after a decent amount of sleep. The second set usually hit right around the time that I am getting up for the day, again following a more restful sleep period. Also, I am taking the antibiotics with a couple of crackers w/ butter to make it easier on my stomach. > Now that I mentioned how well my skin was doing... the itchiness on my shins has been increasing the past couple of days.  > The tension in my back muscles seems to be a steady symptom that limits my activities. I look forward to it's exit from my experience! > Light sensitivity and other neuro symptoms radically dropped starting yesterday morning. I don't know if this improvement is here to stay, but it sure is nice! ________________________________________________________________ Something to Celebrate Appointment with HMO Doctor this week went very well. While he can't "officially" support me in the MP, he is a supportive listener and has helpful answers to some of my health questions. He was kind enough to provide a prescription for enough capsules of one of the antibiotics I will need more of before moving to Phase 2. Hooray! Last edited on Wed Apr 9th, 2008 05:49 by |
|||||||||
|
Joyful Board Staff
|
Wednesday, 5Dec07 ~ Benicar: 147 days ~ Ph1: 51 days ~ Mod Ph2: 3 days ~ ~ Benicar: 40mg, q8/5/6/456h ~ 25mg Abx1 + 38mg Abx2, q48h @ 7am ________________________________________________________________ Light Exposure Outside, daylight: None. Outside, after dark: Fri/Mon/Wed. Night driving. 40% or 10% NoIRs. Indoors, not @ home: Fri, low lux, 3 hrs. 40% NoIRs or none. Mon, brightly lit stores, 1 hr. 40% or 10% NoIRs. Wed, well lit stores, 2 hrs. 10% NoIRs. Indoors, @ home: Low lux, none or 40% NoIRs. Computer, brighter areas, 40% or 10% NoIRs. Indoors, natural light: None. ________________________________________________________________ Symptoms • All symptoms tolerable • 5 • skin (reddish skin throat/neck; ‘eruptions’ random locations, both shins itchy w/ rashes) Thu-Sat:4 Sun-Wed:5 4 • muscles (tension/pain; mid-back area, increases w/ use) Thu-Tue:3 Wed:4 3 • sinuses (continued drainage; periodic sneezing; irritation/sore throat) Thu-Sun:4 Mon-Wed:3 3 • sleep (rhythm disrupted, up until 2-5am, total 8-12 hrs sleep) Everyday 1 • lymph nodes (some inflammation below TMJs, both sides) Tue 1 • burning (bottoms of feet) Tue Other Minor Symptoms (pretty much daily) Light sensitivity; dizzy standing up; TMJs tight; eyes gummy mornings, kidney/bladder stuff; chemical sensitivity; dry lips ________________________________________________________________ Comments > Meds change: Starting Monday, I have begun working the levels of a new antibiotic combination. I have decided to call this ModPh2 in my notes to differentiate between last combination and this new one. > Sleep before 2am still eludes me. Tonight I am going to try the Benedryl option to see how it works for me. (Should have tried it hours ago!) > Skin on lower part of legs is really itchy and has rashed up where I scratched it a couple of nights ago. Still suspect it was set off by the very spicy soup. I tried some more soup on Sunday and the itchiness kicked up yet another notch. > Light sensitivity is still there, just much less. ________________________________________________________________ Something to Celebrate Neuro symptoms seem to be taking a ‘well deserved’ vacation. Mood is up, initiative increased, memory good, cognitive very good. More things on my ‘to-do’ list are done at the end of each day. Hooray! Last edited on Wed Apr 9th, 2008 05:49 by |
|||||||||
|
Joyful Board Staff
|
Wednesday, 12Dec07 ~ Benicar: 154 days ~ Ph1: 51 days ~ Mod Ph2: 10 days ~ ~ Benicar: 40mg, q8h ~ 25mg Abx1 + 75mg Abx2, q48h @ 7am ________________________________________________________________ Light Exposure Outside, daylight: None. Indoors, natural light: None. Outside, after dark: Thu/Fri/Sat/Mon. Night driving, 15-20 min. 40% or 10% NoIRs. Indoors, not @ home: Fri, low lux, 3 hrs. 40% NoIRs or none; Sat, brightly lit store, 10 min. 10% NoIRs; Mon, well lit store, 1 hr. Hat, 10% NoIRs (felt dizzy). Indoors, @ home: Low lux, none or 40% NoIRs. Computer, brighter areas, 40% or 10% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • muscles (tension/pain; mid-back area, increases w/ use) Thu-Sun:4 Mon-Wed:3 4 • skin (reddish skin throat/neck, lower legs itchy w/ rashing, itchy elsewhere) Thu-Sun:4 Mon-Wed:2 3 • sinuses (continued drainage; periodic sneezing; irritation/sore throat) Sat-Wed:3 Thu-Fri:2 2 • sleep (rhythm disrupted, up until 12am-6am, total 8-13 hrs sleep) Everyday Other Minor Symptoms (pretty much daily) Light sensitivity; dizzy standing up; TMJs tight; kidney/bladder stuff; various skin ‘eruptions’; chemical sensitivity; eyes gummy mornings; dry/peeling lips; canker sores (wax/wane) ________________________________________________________________ Comments > Benadryl did not work for me. It didn’t help me sleep and once I did get to sleep, it was only a couple hours before I awoke with very itchy lower legs. I immediately thought ‘rebound’ and decided to not experiment with Benadryl anymore. > Canker sores gave me some trouble this week and increasing the Lysine dose seemed to help. > Skin on lower part of legs has been really itchy, but seems to be calming down. The rash is also still present and slow to heal.. At the beginning of the week I took small amounts of hydroxyzine 2-3 times per day for it’s antihistamine effect. This did calm the itchiness and since I wasn’t scratching, this will probably will help with the healing of the skin. > I found that I can get to sleep much more quickly if the first thing I do when lying down is dissolve 20mg of Benicar under my tongue. (Probably brings down neuro inflammation?) ________________________________________________________________ Something to Celebrate First matching grant for Autoimmunity Research met! New matching grant challenge offered! Last edited on Wed Apr 9th, 2008 05:48 by |
|||||||||
|
Joyful Board Staff
|
History of 25D levels… Test #1 04Jun07 25D= 32 ng/mL {Pre-MP, D supplemented}/Quest Labs Test #2 06Aug07 25D= 26 ng/mL {2 months, avoid D/sun; 1 month on MP}/HMO lab Test #3 05Oct07 25D= 39 ng/mL {3 months on MP}/HMO lab Test #4 05Dec07 25D= 27 ng/mL {5 months on MP}/HMO lab Sun exposure. I very rarely (once/twice a week for one/two hours) go out during the day. When I do, I use the zinc oxide cream on my face and hands, I wear a broad-brimmed hat and cover over all over. My only sun exposure is between the car and the store/office I am going to. Because of the increased sun sensitivity I have actually gone out about half as much during the daytime hours since Test #2. Note that at 1 month into the MP, the 25D level was on a downward trend and I was feeling pretty good about my sun avoidance and dietary compliance. And then, 3 months into the MP my 25D threw itself into reverse and came up 7 units higher than pre-MP! You might imagine the shock I felt when the nurse read the number off the report from Test #3 to me. I have been trying so hard to do this right and this number was higher that at the start. Higher than when I was taking 2-4 Krill Oil per day. Higher than after a month of supplementation with a Women's multi-vitamin. Higher than when I was out in the sun without a hat or sunscreen a couple times a week for hours at a time working in my garden or yard. Just a feeling of pure shock. I had attempted to strictly follow the MP guidelines for sun avoidance and dietary D avoidance … and all the time the 25D level was climbing up 13 points behind my back! This was very confusing and put me into detective mode, trying to ferret out what I could be doing wrong. Here is my list of frequently used supplements that might have gotten me into trouble (all stopped now):
|
|||||||||
|
Joyful Board Staff
|
Joyce Waterhouse [jcwat101] made these helpful comments in response to my questions concerning my dietary intake:Have you been consuming the grass fed dairy products at the same rate throughout? Personally, I do think they could be contributing to the 25D levels. I found, during the time I was highly sensitive to vitamin D that so-called natural or organic beef and chicken had more vitamin D than the non natural, or non grass fed types. In fact, I appreciate your posting that quote [from Dr. Weston Price], since it confirms what I found. So, if you really want to bring it down maximally, you might want to at least cut back on those dairy products, particularly the fat component or switch to a non grass fed type. Of course, if you were consuming those continuously at the same level, the decline in your levels prior to the second test, suggests you could bring the 25D down through changing the supplements. So, if you wanted to do it in stages you could, if you really don't want to change the dairy consumption. You could see if the change in supplements alone does the job and if not, you could go farther with a change with regard to the dairy consumption. But if you reduce dairy products overall, you need to replace the calcium with a supplement to get the RDA level (Solgar's calcium chelate is what I use). Although, I think the supplements are the most likely cause, it could also occur that your body's own regulatory mechanisms are affecting your 25D to cause this sudden shift. But even if that is involved, I think you do need to try the above suggestions to try to help bring it down. I wouldn't get too upset though, since you have been having immunopathology reactions. The Benicar is displacing enough 25D and other VDR blockers that you are killing bacteria. |
|||||||||
|
Joyful Board Staff
|
Since the high test result from Test #3 I have made the following changes in my diet:
or have added since the high test result:
and after the high test result:
So, I am now happy to have a lower 25D test result again (=27, yeay). I am a little concerned that my continued use of dairy products (an easy “fast food” in our house) may slow the eventual process of bringing the 25D level down to the point when it is not suppressing my immune system. But I’m not concerned enough that I will completely stop eating those foods. I’m just trying to keep an eye on my intake of dairy on a daily basis. Last edited on Wed Dec 19th, 2007 10:33 by Joyful |
|||||||||
|
Joyful Board Staff
|
Friday, 21Dec07 ~ Benicar: 163 days ~ Ph1: 51d, ModPh1: 79d ~ Mod Ph2: 19 days ~ ~ Benicar: 40mg, q8/6/5/5h ~ 50mg Abx1 + 75mg Abx2, q48h @ 7am ________________________________________________________________ Light Exposure Outside, daylight: None. Indoors, natural light: None. Outside, after dark: Thu/Fri/Mon/Tue/Fri. Night driving, 15-20 min. 40% or 10% NoIRs. Indoors, not @ home: Thu, medium lit store, 15 mins.10% NoIRs. Fri, low lux eatery, 30 mins. Fri, medium lit home, 30 mins.10% NoIRs. Mon, fluorescent lit locations, 4 hrs. 10% NoIRs, or Hat + 40% NoIRs. Tue, fluorescent lit location, 10 mins. 10% NoIRs. Fri, low lux, 2 hrs. Hat and/or 40% NoIRs. Indoors, @ home: Low lux, none or 40% NoIRs. Computer, brighter areas, 40% or 10% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 3 • neuro (emotionally fragile, slower cognitive only during peak IP period today) 2ndThu only 3 • skin (lower legs itchy w/ dry skin that rashes up if scratched) ThuFriSat:2 TueWed:3 3 • sleep (rhythm disrupted, up until 12am-6am, total 8-13 hrs sleep) Everyday 3 • muscles (tension/pain; mid-back area, increases w/ use) ThuFrSat:2 Sun:3 Tue:2 2 • hormonal (personal rolling heat waves; fever/chills) 2ndThuFri:2 Other Minor Symptoms (pretty much daily) Light sensitivity; dizzy standing up; various skin eruptions/itchiness; kidney/bladder stuff; chemical sensitivity; eyes gummy mornings; sinus drainage; irritation/sore throat; dry/peeling lips; canker sores (wax/wane); TMJs tight. ________________________________________________________________ Comments > Since all symptoms seemed to be minimal last week, I tried taking Benicar q8h for some days. Stretching out the time between Benicar doses seemed to be tolerable, but I could detect an increase in inflammation symptoms. I could ‘manage’ with that schedule, but I know I can tolerate more immunopathology with the q6h dosing that I use currently. Good to know. > Skin seemd to be all calmed down until the second day after the new 50mg dose of Minocycline (Tue). I am continuing to take extra hydroxyzine as needed for it’s antihistamine effect. Yesterday, without notice, almost all itchiness just was gone. Interesting. > Experienced some previous symptoms (neuro/hormonal) during peak immunopathology (IP) period (28-36 hrs since abx) yesterday. Interesting. > Hardly any muscle tension and/or pain since this Tuesday. Nice. ________________________________________________________________ Something to Celebrate New 25D result from the test taken on 5Dec07 is 27. Last edited on Wed Apr 9th, 2008 05:50 by |
|||||||||
|
Joyful Board Staff
|
Friday, 28Dec07 ~ Benicar: 170 days ~ Ph1: 51d, ModPh1: 79d ~ Mod Ph2: 26 days ~ ~ Benicar: 40mg, q8/6/5/5h ~ 50mg Abx1 + 75mg Abx2, q48h @ 8am ________________________________________________________________ Light Exposure Outside, daylight: Hat, 2%+10% NoIRs, zinc, covered. Passenger in car on Tue, 30 min. Indoors, natural light: Hat + 10% NoIRs, zinc. Visiting family on Tue, 1 hr. Outside @ night, car driving: 10% NoIRs. Sat, 30 min. Outside @ night, car passenger: 10% NoIRs. Tue, 30 min. Indoors @ fluorescent lit: Hat + 10% NoIRs. Sat, 1 hr. Indoors @ medium lit: Hat + 40% NoIRs. Tue, 3 hr. Indoors @ computer/tv: 40% NoIRs. Almost daily, 2-6 hours. Indoors @ low lux: None or 40% NoIRs. Daily in house. ________________________________________________________________ Symptoms • All symptoms tolerable • 3 • skin (lower legs very itchy intermittently) WedThu:3 2 • neuro (emotionally fragile, slower cognitive intermittently) SatSun:2 2 • muscles (tension/pain; mid-back area, increases w/ use) SatSunMon:2 2 • hormonal (rolling heat waves or fever/chills) SatSun:2 Other Minor Symptoms (pretty much daily) Light sensitivity; dizzy standing up; sleep rhythm disrupted; mild neuro symptoms; various skin eruptions/itchiness; kidney/bladder stuff; chemical sensitivity; eyes gummy mornings; sinus drainage; irritation/sore throat; dry/peeling lips; canker sores (wax/wane); TMJs tight. ________________________________________________________________ Comments > I have decided to go back onto a strict Q6H schedule for the Benicar. There just seems to be a build-up of inflammation if I try to stretch even the night dose to 8 hours. I returned to this schedule yesterday and can tell a difference already. Ahhh. > Following the conversation in the thread: “Bacteria In Cows' Milk May Cause Crohn's Disease,” I stopped using the cranberry sugars (d-mannose) palliatively on 22Dec07. > Skin still has it's moments of strong itchiness but it is not a constant symptom now. > New red spots around waist that don’t itch, but look like mosquito bites on Thursday. > New ‘pinched’ feeling on tummy below skin just to left of appendectomy scar most of Friday. ________________________________________________________________ Something to Celebrate A big thanks to the moderators & a prosperous new year! Last edited on Wed Apr 9th, 2008 05:50 by |
|||||||||
|
Joyful Board Staff
|
Friday, 4Dec08 ~ Benicar: 177 days ~ Ph1: 51d, ModPh1: 79d ~ Mod Ph2: 33 days ~ ~ Benicar: 40mg, q6h ~ 50mg Abx1 + 113mg Abx2, q48h @ 8am ________________________________________________________________ Light Exposure Indoors, natural light: No eye protection, light filtered through curtains. Mon, 4 hr Indoors @ medium lit: No eye protection. Sun/Mon, 3 hr. Outside @ night, car driving: Hat + 10% NoIRs. Fri, 30 min. Outside @ night, car passenger: 10% NoIRs. Fri, 20 min. Indoors @ medium lit: Hat + 10% NoIRs. Fri, 4 hr. Indoors @ computer/tv: 40% NoIRs. 4-10 hours per day. Indoors @ low lux: No eye protection. Daily in house. ________________________________________________________________ Symptoms • All symptoms tolerable • 5 • muscles (cramping, feet/legs at bedtime, for a couple of hours) Sun 5 • muscles (tension/pain, mid-back/shoulder/neck) Sun:5 MonTue:3 Remainder:2 Other Minor Symptoms (pretty much daily) Light sensitivity; dizzy standing up; mild neuro symptoms; sleep rhythm off; various skin eruptions/itchiness; kidney/bladder stuff; chemical sensitivity; eyes gummy mornings; sinus drainage; irritation/sore throat; dry/peeling lips; canker sores (worse this week); TMJs tight. ________________________________________________________________ Comments > Skin itchiness hasn’t been any major trouble since last week. > Muscle spasms on my neck & shoulders, along with foot and leg cramps while trying to get to sleep on Sunday. I seemed to get some relief about 30 minutes after rubbing peppermint oil on the bottoms of my feet. A heating pad also seemed to be of some help. I am not sure if this was a result of moving some heavy boxes earlier in the day or not. > Canker sore inside lip has now been joined by cold sore outside on the lip next to it. Keeps getting my attention whenever I eat or drink anything. Increase in almond/coconut/chocolate consumption over the holidays probably didn’t help. I’ve increased the Lysine to try to get this under control. > Couple days of a new minor pain in left toe where I broke the bone in three places 2 years ago. The pain is gone now. ________________________________________________________________ Something to Celebrate It seems like this dose of Abx2 is again a ‘sweet spot’ for me neurologically. I had some real productive times after midnight this week. One night I cleaned up my house in preparation for a visit from family, another night I cleaned up the unruly stacks in my office that have been bugging me for over a year, but didn’t have the executive function to deal with. I am sorry to have my sleep cycles off from the rest of the household, but I was so happy to get these tasks done! Last edited on Wed Apr 9th, 2008 05:51 by |
|||||||||
|
Joyful Board Staff
|
Friday, 11Jan08 ~ Benicar: 184 days ~ Ph1: 51d, ModPh1: 79d ~ Mod Ph2: 40 days ~ ~ Benicar: 40mg, q6h ~ 75mg Abx1 + 113mg Abx2, q48h @ 8am ________________________________________________________________ Light Exposure Outside, daylight, driving car, to/from bldgs: 2% NoIRs. Tue, 1 hr. 2%+10% NoIRs. Thu, 1 hr. Indoors @ fluorescent lit: Hat + 10% NoIRs. Tue, 1.5 hr. Thu, 30 min. Outside @ night, car passenger: 10% NoIRs. Fri, 20 min. Indoors @ low/medium lit: 10% NoIRs. Fri, 4 hr. Indoors @ computer/tv: 40% NoIRs. #hrs:day: 7:Sat,6:Sun,6:Mon,2:Tue,5:Wed,8:Thu,4:Fri.. ________________________________________________________________ Symptoms • All symptoms tolerable • 5 • muscles (cramping, legs and/or feet) Thu:5 SatWedFri:3 5 • muscles (tension/pain, mid-back/shoulder/neck) Wed:5 TueThu:4 SatSunMonFri:3 1 • GI tract (diarrhea) Sun 5pm – One time 34hr after taking the antibiotics Other Minor Symptoms (From most to least noticeable) Sleep rhythm off; light sensitivity; canker sores; dry/peeling lips; eyes gummy mornings; mild neuro symptoms; dizzy standing up; kidney/bladder stuff; TMJs tight; sinus drainage; irritation/sore throat; various skin eruptions/itchiness; chemical sensitivity. ________________________________________________________________ Comments > Sun exposure twice this week for doctor/dentist (Tue/Thu) appointments made me think I should put off increasing the 2nd antibiotic's dose until Monday. This is so I can try to discern what symptoms are related to the sun exposure and what can be tied to an antibiotic increase. > I have had muscle spasms on my neck & shoulders, along with foot & leg cramps again this week. They seem to be worse after doing any physical activity including laundry, washing dishes, or moving medium weight items (such as boxes). I could not correlate the increases to the two daylight outings. As far as I know I am getting enough magnesium in my diet. The cramping seems to be rooted more in something going on with the nerves and responds to taking a little extra (1/3 to 2/3mg) Valium as needed. > A continued canker sore from last week (on the inside of my lip) became even worse, and up to Tuesday was red, inflamed and painful. Lysine didn’t seem to have any effect. I tried eating very low carb starting last week without any change. The sore finally started resolving late Tuesday with the addition of probiotics and drinking organic pastures raw milk, along with using the raw milk as a mouthwash for a couple of days. Maybe it was GI tract related? > Plan: to keep working up to maximum modified phase 2 doses until my doctor’s appointment on Jan 29th and then it’s on to the full phase 2! ________________________________________________________________ Something to Celebrate No skin involvement worth mentioning at this point. Since this was such a problem for me before the MP and in phase 1, I am thrilled that the increased antibiotics have not made this symptom an issue for me. Whew! Last edited on Wed Apr 9th, 2008 05:51 by |
|||||||||
|
Joyful Board Staff
|
Friday, 18Jan08 ~ Benicar: 191 days ~ Ph1: 51d, ModPh1: 79d ~ Mod Ph2: 47 days ~ ~ Benicar: 40mg, q6h ~ 75mg Abx1 + 150mg Abx2, q48h @ 8am ________________________________________________________________ Light Exposure Computer (day:#hr): Sat:8, Sun:8, Mon:7, Tue:2, Wed:3, Thu:8, Fri:8 w/ 40% NoIRs. Stayed @ home in medium to low lux all week w/ none or 40% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 3 • muscles (tension/pain, mid-back/shoulder/neck) Wed:3 Remainder:2 2 • muscles (cramping, legs and/or feet) SatSun:2 MonThuFri:1 Other Minor Symptoms (From most to least noticeable) Sleep rhythm off; light sensitivity; minor neuro symptoms; eyes gummy mornings; dry/peeling lips; chemical sensitivity; dizzy standing up; kidney/bladder stuff; TMJs tight; canker sores; sinus drainage; irritation/sore throat; various skin eruptions/itchiness. ________________________________________________________________ Comments > Muscle tension/pain/cramping has been more tolerable after beginning to take more small doses of Valium during the day to address the symptoms. ________________________________________________________________ Something to Celebrate Dr. Marshall’s new paper: “Vitamin D discovery outpaces FDA decision making” is now available for our reading enjoyment! Last edited on Wed Apr 9th, 2008 05:52 by |
|||||||||
|
Joyful Board Staff
|
Friday, 25Jan08 ~ Benicar: 198 days ~ Ph1: 51d, ModPh1: 79d ~ Mod Ph2: 54 days ~ ________________________________________________________________ Light Exposure Computer: Sat:7hr, Sun:4, Mon:7, Tue:4, Wed:6, Thu:6, Fri:4 mostly w/ 40% NoIRs. Stayed @ home in medium to low lux all week w/ none or 40% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 6 • muscle spasms (sudden episode of spasms, worst around ribcage; plus hands/legs/other) Tue:6 3 • muscle tension (tension/pain, mid-back/shoulder/neck) SatTueWedThu:3 SunMonFri:2 3 • neuro (coordination, short term memory; hard to manage/juggle tasks) SatSunMonTue:3 2 • joint pain (intermittent; knee, wrist, TMJ, fingers, elbow, hip, ankle) SatTueWed:2 SunMonFri:1 1 • temperature disregulation (intermittent; night sweats, poor circulation) SatSun:1 Other Minor Symptoms (From most to least noticeable) Sleep rhythm off; light sensitivity; gummy/irritated eyes after sleeping; minor neuro symptoms; dry/peeling lips; various skin eruptions/itchiness; TMJs tight; chemical sensitivity; dizzy standing up; kidney/bladder stuff; canker sores; sinus drainage; irritation/sore throat. Sleep: Sat:11hr, Sun:11, Mon:12, Tue:9, Wed:11, Thu:9, Fri:10. Not necessarily all at once. ________________________________________________________________ Comments > Again tried stretching to a 72 hour cycle before increasing the Minocycline last Sunday. I didn’t feel an increase in energy or a decrease in symptoms the way I have in the past. Maybe my immune system is staying ‘on the job’ without the antibiotic’s modulatory effects? Something to note anyway. ________________________________________________________________ Something to Celebrate ScienceDaily has picked up the AlphaGalileo version of the news release "Vitamin D Deficiency May Be Symptom Of Disease: Supplements May Make It Worse" http://www.sciencedaily.com/releases/2008/01/080125223302.htm Last edited on Wed Apr 9th, 2008 05:52 by |
|||||||||
|
Joyful Board Staff
|
Friday, 1Feb08 ~ Benicar: 205 days ~ Ph1: 51d, ModPh1: 79d ~ Mod Ph2: 61 days ~ ________________________________________________________________ Light Exposure Computer: Sat:6hr, Sun:6, Mon:7, Tue:3, Wed:7, Thu:7, Fri:4 w/ none or 40% NoIRs. Stayed @ home in medium to low lux all week, except Tuesday, w/ none or 40% NoIRs. Outside, daylight, driving in car, to/from bldgs: Tue, 20min, w/ 2% NoIRs. Outside @ night, car driving: Tue, 30 min, w/ 10% NoIRs. Indoors @ fluorescent lit stores: Tue, 2 hrs, w/o hat + 10% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 3 • muscle tension (tension/pain, mid-back/shoulder/neck) SatWedThuFri:3 1 • muscle spasms (cramping, feet/legs) SatSunFri:1 1 • temperature disregulation (night sweats, colder hands/feet) Everyday 1 • GI tract (canker sores; gurgling, gas, discomfort) MonTueWedThu:1 Other Minor Symptoms (From most to least noticeable) Sleep rhythm off; light sensitivity; body ‘thermostat’ off; canker sores; gummy/irritated eyes after sleeping; minor neuro symptoms; dry/peeling lips; sinus drainage; irritation/sore throat; dizzy standing up; various skin eruptions/itchiness; kidney/bladder stuff; TMJs tight; chemical sensitivity. Sleep: Sat:9hr, Sun:12, Mon:10, Tue:11, Wed:8, Thu:9, Fri:12. ________________________________________________________________ Comments > Successfully handled Tuesday afternoon trip to HMO doctor’s office (well lit with fluorescents). The lights didn’t bother me hardly at all (I took Benicar q4h w/ extra 2x20mg sublingual). In fact, I felt so good afterwards that I went out to dinner (after sunset & low lit) and then shopped two brightly lit stores. By the end of the evening I was feeling the fatigue set in, but that was about it. ________________________________________________________________ Something to Celebrate > All other symptoms are leveling out and I am getting ready to start phase 2 next week! Last edited on Wed Apr 9th, 2008 05:53 by |
|||||||||
|
Joyful Board Staff
|
Thursday, 7Feb08 ~ Benicar: 211 days ~ Ph1: 51d, ModPh1: 79d, ModPh2: 62d ~ Phase 2: 01 day ~ ________________________________________________________________ Light Exposure Computer: Fri:4hr, Sat:4, Sun:5, Mon:10, Tue:4, Wed:5, Thu:10, mostly w/ 40% NoIRs. Stayed @ home in medium to low lux all week, except Tuesday evening, w/ none or 40% NoIRs. Outside, daylight: Tue, 1min, looking out front door w/ no eye protection (eeek!). Outside @ night, car driving: Tue, 30 min, w/ 10% NoIRs. Indoors @ fluorescent lit hospital lab: Tue, 10 mins, w/ ballcap + 10% NoIRs. Indoors @ low lit resturaunt: Tue, 2 hr, w/ ballcap, but not wearing NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • muscle spasms (cramping, right foot /arm) Tue 2 • muscle tension (tension/pain, mid-back/shoulder/neck) Every evening Other Minor Symptoms (From most to least noticeable) Sleep rhythm off; light sensitivity; body ‘thermostat’ off; minor neuro symptoms; dry/peeling lips; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; dizzy standing up; chemical sensitivity; TMJs tight; various skin eruptions/itchiness; canker sores. Sleep: Fri:12hr, Sat:12, Sun:9, Mon:6, Tue:13, Wed:10, Thu:9. ________________________________________________________________ Comments > Having trouble this past week with seeing well enough to read from the computer screen. The 40% NoIRs are too dark, but taking them off the LCD is too bright and my eyes start to hurt. Some days I’ve just kept the NoIRs off, but I think that was making it harder to sleep. So, today I turned the brightness up on the monitor half-way and now I can see with the NoIRs on a whole lot better. Such a juggling game we must play! > Late Tuesday night and early Wednesday morning my foot and leg muscles really started to spasm/cramp again. I suspect the sunlight exposure. The pain calmed down around 2am. Finally got to sleep around 4am. Same old lesson learned one more time. > Today I have taken my first small doses of the full phase 2 antibiotics @ 8am. >I’ll let you know how things go! ________________________________________________________________ Something to Celebrate > All the amazing, kind, caring people on the MarshallProtocol.com study site! Last edited on Wed Apr 9th, 2008 05:53 by |
|||||||||
|
Joyful Board Staff
|
Saturday, 16Feb08 ~ Benicar: 220 days ~ Ph1: 51d, ModPh1: 79d, ModPh2: 62d ~ Phase 2: 10 days ~ ________________________________________________________________ Light Exposure Computer: [1]:10hr, [2]:8, [3]:7, [4]:10, [5]:6, [6]:4, [7]:6, [8]:7, [9]:4, [10]:8. 40% NoIRs. Stayed @ home in medium to low lux all week, w/ none or 40% NoIRs. Indoors @ fluorescent lit: [2], 30 min, w/ ballcap + 10% NoIRs. Outside @ night, car driving: [2], 30 min, w/ 10% NoIRs. Outside @ night, car passenger: day [9]:30 min, w/ 10% NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • fatigue (body wants more sleep/resting/down time; physical tasks are exhausting) day:[3][4] 2 • mood (hyper-sensitivity, irritability) day:[4] 2 • muscle tension (tension/pain, mid-back/shoulder/neck) day:[1][2][3][5][6] 1 • muscle spasms (an awareness of cramping, but at very low levels) day:[7][8][9][10] Other Minor Symptoms (From most to least noticeable) Sleep rhythm off; dizzy standing up; light sensitivity; irregular body ‘thermostat’; various minor skin eruptions/itchiness; dry/peeling lips; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; minor neuro symptoms; chemical sensitivity; stiffness in TMJ area. Sleep: [1]:9hr, [2]:9, [3]:11, [4]:9, [5]:11, [6]:11, [7]:6, [8]:8, [9]:11, [10]:11. ________________________________________________________________ Comments > Skin irritation, itchiness returned while at the tail-end of taking 50mg of Minocycline daily prior to starting phase 2. This was mostly resolved by day [3] of this first cycle in phase 2. > Peak symptoms seemed to be fatigue and irritability on days [3] and [4]. > Light menstrual period days [6] to [9] with the usual faint cramping and minimal flow which is dark (as it has been these past few months) but with a bit more fluid. Still not what I would call a ‘real’ menstruation with appropriate fluid volume and expected brighter red color. It will be interesting to see what happens next month. > I helped my husband remove our malfunctioning range hood and install a replacement on day [3] of this cycle. Lots of twisting and bending and using out of shape muscles in my arms and back. Had to lay down a couple times for recovery during the two hour long process. Right forearm muscles hurt the most for a couple of days afterwards. ________________________________________________________________ Something to Celebrate Things seem to be going along ok! Last edited on Wed Apr 9th, 2008 05:54 by |
|||||||||
|
Joyful Board Staff
|
Sunday, 9Mar08 ~ 32 days in Phase 2 ~ 22 days in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in medium to low lux, w/ none or 40% NoIRs. Indoors @ fluorescent lit: {18}{21}:40 min, w/ hat + 10% NoIRs. Outside @ night, car driving: {18}:40 min, w/ 10% NoIRs. Outside @ night, car passenger: {13}{16}{21}:30 min, w/ 10% NoIRs. Computer use, mostly with 40% NoIRs: {cycle day}:total number hours per day {1}:12hr, {2}:5, {3}:5, {4}:10, {5}:15, {6}:11, {7}:5, {8}:2, {9}:2, {10}:3, {11}:6, {12}:6, {13}:6, {14}:4, {15}:6, {16}:2, {17}:7, {18}:4, {19}:5, {20}:6, {21}:6, {22}:8. ________________________________________________________________ Symptoms • All symptoms tolerable • 6 • neuro (emotional fragility, cognitive errors, nausea) day:{9} thru {16} 4 • insomnia (difficulty getting to sleep both at bedtime and after meds alarm) days:{1},{4} thru {19} 4 • neuro (histamine: skin itchy and/or burning, hyper-vigilance, nausea) days:{2}{3} 4 • muscle tension (tension/pain, back/neck/arms) days:{6} thru {8} 2 • muscle spasms (cramping, mostly in legs/back/neck) days:{ 1},{4} thru {8} 2 • joints (lots of clicking from various joints) days:{6} thru {8} 2 • neuro (emotional fragility, cognitive errors) days:{7}{8} 2 • other (intermittent pin prick sensations) days:{1}{19} thru {22} 2 • skin (face is dry, flaky, new bumps, etc.) days:{5} thru {22} Other Minor Symptoms (From most to least noticeable) Sleep rhythm off; light sensitivity; chemical sensitivity; sinus drainage; irritation/sore throat; dry/peeling lips; gummy/irritated eyes after sleeping; minor neuro symptoms; dizzy standing up; various minor skin eruptions/itchiness; irregular body ‘thermostat’; stiffness in TMJ area. Sleep: {cycle day}:total number hours per day {1}:6hr, {2}:14, {3}:11, {4}:6, {5}:6, {6}:7, {7}:16, {8}:9, {9}:10, {10}:8, {11}:12, {12}:12, {13}:6, {14}:12, {15}:8, {16}:14, {17}:8, {18}:11, {19}:7, {20}:12, {21}:11, {22}:5. ________________________________________________________________ Comments > I have been noticing a pattern where exposure to direct light in my eyes (such as oncoming headlights at night) seems to lead to the onset of muscle spasms about an hour or so later. On the days when I don’t have any bright light inadvertently shine directly into my eyes, the muscles are fine. > Used a tighter Benicar schedule q4h on days {10} thru {16} for insomnia and other neurological symptom relief. On day {17} I discovered that I could return to the q6h schedule if I added a half tablet of Benicar sublingual at each dose. By day {20} (the day after increasing the Mino dose) I found I no longer needed that either. Boy, I sure miss my brain when it takes an ‘inflammatory/healing vacation’ like it did this cycle! > Increasing the Minocycline dose to 50mg on day {19} did seem to help modulate the immune response. ________________________________________________________________ Something to Celebrate Everything seems to be coming along just about as expected. So far, so good!Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 Last edited on Wed Apr 9th, 2008 05:54 by |
|||||||||
|
Joyful Board Staff
|
Palliatives notes:
|
|||||||||
|
Joyful Board Staff
|
Just for the record: I have been having significant difficulty getting to sleep before 6am each morning and it doesn’t really matter when I ‘decide’ I need to go to sleep by. Usually this has not been a problem because I do not work outside the home. But recently I have had a need to be available at an earlier hour due to family circumstances. So, this past two nights I have tried out the use of a larger dose of Valium at bedtime just to see if I really could get to sleep when I need to. Day {1} of this cycle: I first tried 5 tablets of 2mg each (crushed and swallowed) at bedtime. It worked very well to help me get to sleep and stay asleep. In fact, I think a much smaller dose would have been sufficient for the same effect. However, some time in the early morning my muscles in my right leg/foot cramped so hard that I leapt out of bed from a dead sleep. (So much for helping with muscle spasms, but then again, there were light issues involved--as mentioned before.)I don’t plan to use these high of doses on a regular basis, but I just had to try an experiment like this once to determine what to use if and/or when I experience additional intolerable insomnia. |
|||||||||
|
Joyful Board Staff
|
Wednesday, 19Mar08 ~ 42 days in Phase 2 ~ 10 days in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in medium to low lux, w/ none or 40% NoIRs. Indoors @ medium lit: {5}:3 hr, w/ hat + 40% NoIRs. Outside @ night, car driving: {5}:20 min, w/ hat + 10% NoIRs. Indoors @ fluorescent lit: {1}:20 min, w/ hat + 10% NoIRs. Outside @ night, car passenger: {1}:30 min, w/ 10% NoIRs. Computer use, mostly with 40% NoIRs: {cycle day}:total number hours per day {1}:3, {2}:10, {3}:5, {4}:6, {5}:10, {6}:6, {7}:7, {8}:6, {9}:6, {10}:6. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • insomnia (difficulty getting to sleep: at bedtime and after meds alarm) days:{7} thru {10} 4 • muscle tension (tension/pain, back/neck/arms) days:{2}{5} thru {9} 4 • lymph (numbness/pain in arms upon waking; swelling under jawbone) days:{8} thru {10} 2 • muscle spasms (cramping, mostly in legs/back/neck) day:{2} (before extra Valium) 2 • eyes (need 1.25+ reading glasses, only right after waking) days:{3} thru {10} 2 • joints (pain in finger joints) days:{1}{9} Other ‘baseline’ symptoms (From most to least noticeable) Sleep rhythm off (hard to sleep before 6am); light sensitivity; chemical sensitivity; sinus drainage; irritation/sore throat; dry/peeling lips; gummy/irritated eyes after sleeping; skin: face dry, random itchiness (histamine), various minor eruptions; minor neuro symptoms; dizzy standing up. Sleep {cycle day}:total number hours per day {1}:9, {2}:10, {3}:10, {4}:14, {5}:7, {6}:10, {7}:10, {8}:8, {9}:15, {10}:13. ________________________________________________________________ Comments > I had very little IP on days {1} thru {7} with the lower dose of the phase 2 antibiotic (half of the dose used last cycle). So, on day {7} I increased the Minocycline from 50mg to 75 mg to see if I would get more IP. And it didn’t take long for the symptoms to bump up a notch! … I have had a harder time staying asleep (the only medication that eventually gets me to sleep is 20mg Benicar sublingual), my skin is more itchy—not all the time, but noticeably more often—and my neck and lower back have had less tolerable stiffness/tension/pain. > Today (Wednesday) is day {10} of this cycle. However, I have decided to move up when I take my antibiotics to 4 pm today to see if it works better for trying to sleep before 6am. So, today is also day {1} of my new cycle. ________________________________________________________________ Something to Celebrate Positive changes in symptoms...
Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 Last edited on Wed Apr 9th, 2008 05:55 by |
|||||||||
|
Joyful Board Staff
|
Friday, 28Mar08 ~ 52 days in Phase 2 ~ 10 days in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in medium to low lux, w/ none or 40% NoIRs. Outside @ night, car passenger: {2}{10}:20 min, w/ hat + 10% NoIRs. Indoors @ fluorescent lit: {2}:10 min, w/ hat + 10% NoIRs. Outside @ night, car driving: {3}{6}:20 min, w/ hat + 10% NoIRs. Indoors @ low lit: {3}{6}{10}:3 hr, w/ no NoIRs. Computer use, mostly with 40% NoIRs: {cycle day} total number hours per day {1} 13, {2} 2, {3} 14, {4} 10, {5} 6, {6} 10, {7} 10, {8} 9, {9} 7, {10} 11. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • sleep (difficulty getting to sleep, staying asleep before 6am) days: {2} thru {5}{8} thru {10} 4 • muscles (twitches/tension/pain: neck/back/arms) days: {7} thru {9} 4 • oral (small fistula; above upper right molar) days: {9} thru {10} 2 • dental (swelling around upper right molar; pain when used) days: {5} thru {10} 2 • fatigue (even simple activities are difficult) days: {4} thru {8} 2 • neuro (cognitive errors, some emotional fragility) days: {4} thru {10} Other ‘baseline’ symptoms (From most to least noticeable) Sleep rhythm off (awake ~4pm to ~6am); sinus drainage; irritation/sore throat; fatigue; light sensitivity; chemical sensitivity; dry/peeling lips; gummy/irritated eyes after sleeping; skin: face dry, random itchiness (histamine), various minor eruptions; minor neuro symptoms; dizzy standing up. Sleep {cycle day} total number hours per day {1} 6, {2} 10, {3} 3, {4} 5, {5} 12, {6} 9, {7} 7, {8} 11, {9} 9, {10} 5. ________________________________________________________________ Comments > First day of new cycle I had no muscle tension/pain, even while doing the laundry and working in the kitchen. This felt almost too good to be true. Sadly, it did not last past day {6}. > Short episode of tinnitus just a couple of times in the early part of this cycle. > Some minor IP around upper right molar with a fistula developing (sort of a lesser repeat of last October’s dental IP). > I have decided to not fight the sleep cycle issues right now and I am mostly awake ~4pm to ~8am. Kind of like working the night shift. > My symptoms of IP are kind of subtle and could be overlooked, but they are very real indications that even this tiny amount of antibiotics is enough for forward progress on the MP. ________________________________________________________________ Something to Celebrate  Today is my birthday. I sure have a lot to be grateful for. I'm especially grateful for my better half, who is putting up with so much during these past 9 months I've been on the MP. Today, he made sure that my 'day' arrived with a nice card, 2 dozen red roses and a simple steak dinner at my favorite Argentinian steakhouse. Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 Last edited on Wed Apr 9th, 2008 05:55 by |
|||||||||
|
Joyful Board Staff
|
Conditions originally listed in my signature line, progress:
|
|||||||||
|
Joyful Board Staff
|
Monday, 7Apr08 ~ 62 days in Phase 2 ~ 10 days in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in medium to low lux, without NoIRs. Nighttime in car: days {5}{7}{8} 20 min, w/ hat + 2% NoIRs. Indoors, medium lit: day {8} 2 hr, w/ hat only. Indoors, fluorescent lit: day {8}:20 min, w/ hat + 10% NoIRs. Computer use, mostly without 40% NoIRs: {cycle day} total number hours per day {1} 5, {2} 12, {3} 7, {4} 10, {5} 3, {6} 7, {7} 8, {8} 14, {9} 10, {10} 11. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • sleep (up at night, sleeping during day) days:{all} 4 • muscles (twitches/tension/pain: neck/back/arms) days:{1}{2}{5}{7} thru {10} 4 • joints (pain; different joints at different times; hip, knee, finger, TMJ) days:{1}{2}{5} thru {10} 4 • oral (small fistula; above upper right molar; resolved now) day:{1} 4 • sinuses (heavy drainage; irritated/sore throat) day:{5} 2 • dental (swelling around upper right molar) days:{1} thru {5} 2 • dental (jaw clenching at night, tooth sensitivity after) days:{4} thru {8} Other ‘baseline’ symptoms (From most to least noticeable) Sleep rhythm off (up nights, sleep days); minor neuro symptoms; dizzy standing up; jaw clenching; fatigue; sinus drainage; irritation/sore throat; chemical sensitivity; dry/peeling lips; gummy/irritated eyes after sleeping; skin: face dry, random itchiness (histamine), various minor eruptions; light sensitivity. Sleep {cycle day} total number hours per day {1} 15, {2} 4, {3} 12, {4} 11, {5} 10, {6} 11, {7} 8, {8} 7, {9} 6, {10} 7. ________________________________________________________________ Comments > I have given up trying to drive myself, even at night, and have changed from using 10% NoIRs when in car at night to 2% NoIRs. I just can’t take the brightness of the oncoming headlights. Too many neurological symptoms following each incident of this kind of light exposure. ________________________________________________________________ Something to Celebrate All the great folks that make the MP study site the most patient accessible, caring, and affordable (donations only) place to pursue recovery when all the standard medical tests and methods have failed those of us who are chronically ill !!! Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 Last edited on Wed Apr 9th, 2008 05:46 by |
|||||||||
|
Joyful Board Staff
|
Update: D25 Test Results Test #1 04Jun07 25D= 32 ng/mL {Pre-MP, D supplemented} Test #2 06Aug07 25D= 26 ng/mL {2 months, avoid D/sun; 1 month on MP} Test #3 05Oct07 25D= 39 ng/mL {3 months on MP} Test #4 05Dec07 25D= 27 ng/mL {5 months on MP} Test #5 05Feb07 25D= 29 ng/mL {7 months on MP} Test #6 05Apr07 25D= 18 ng/mL {9 months on MP} My thoughts: There were a bunch of posts earlier in this thread about why Test #3 was higher and maybe it was some bad food choices (Caesar salads) possibly combined with a supplement with undeclared D in it. But I guess we will never know for sure. I haven't felt concerned about small +/-3 unit changes because I think the margin for getting different results, based on handling and storage is probably that large. But I am happy to see it finally make a major move lower this last test. I've been kind of strict about having this test done exactly every two months apart, mostly because I was curious to see if there was some meaningful type of "curve" to the change in 25D levels. (Didn't happen.) |
|||||||||
|
Joyful Board Staff
|
This is a mid-cycle update... Wednesday, 16Apr08 ~ 71 days in Phase 2 ~ 9 days so far in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in medium to low lux, without NoIRs. Daytime in car: {8} 20 min, w/ hat + 2% NoIRs for doctor appointment. Indoors, fluorescent lit: {8} 40 min, w/ hat + 10% NoIRs. Computer use, mostly without 40% NoIRs: {cycle day} total number hours per day {1} 10, {2} 4, {3} 5, {4} 1, {5} 0, {6} 9, {7} 7, {8} 7, {9} 10 .________________________________________________________________ Symptoms • All symptoms tolerable • 4 • sleep (up at night, sleeping during day) days:{all} 4 • muscles (twitches/tension/pain: neck/back/arms) days:{1}{9} 4 • joints (pain; different joints at different times; hip, knee, finger, TMJ) days:{3}{4} 4 • sinuses (heavy drainage; irritated/sore throat) day:{5} 2 • neuro (emotional fragility, cognitive errors) days:{2} thru {7} 2 • dental (jaw clenching at night, tooth sensitivity after) days:{4} thru {8} Other ‘baseline’ symptoms (From most to least noticeable) Sleep rhythm off (up nights, sleep days); minor neuro symptoms; jaw clenching; fatigue; sinus drainage; irritation/sore throat; dry/peeling lips; joints ‘popping’ with minor movement; chemical sensitivity; dizzy standing up; gummy/irritated eyes after sleeping; skin: face dry, random itchiness (histamine), various minor eruptions; light sensitivity. Sleep {cycle day} total number hours per day {1} 6, {2} 13, {3} 12, {4} 4, {5} 17, {6} 7, {7} 14, {8} 9, {9} 9. ________________________________________________________________ Comments > I am planning to stretch this cycle out, waiting until after the resolution of a major (stressful) family related situation that will be ongoing for the next couple of weeks. I plan to continue to keep taking first antibiotic every other day as usual and then, when it is all over, I will begin a new cycle. ________________________________________________________________ This Is Always Something to Celebrate! |
|||||||||
|
Joyful Board Staff
|
This is a mid-cycle update... Saturday, 26Apr08 ~ 81 days in Phase 2 ~ 19 days so far in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, without NoIRs. Nighttime in car: {11}{14} 20 min, w/ hat + 2% NoIRs.. Indoors, medium lit: {11}{14} 3 hrs, w/ hat + without NoIRs. Computer use, mostly without 40% NoIRs: {cycle day} total number hours per day {10} 11, {11} 11, {12} 10, {13} 9, {14} 7, {15} 4, {16} 7, {17} 5, {18} 10, {19} 5. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • sleep (up at night, sleeping during day) days:{10} thru {13} 4 • muscles (twitches/tension/pain: neck/back/arms) days:{10}{13} thru{19} 4 • joints (pain; different joints at different times; hip, knee, finger, TMJ) days:{11}{13} thru {16} 4 • sinuses (heavy drainage; irritated/sore throat) day:{12} 3 • skin(irritation around front of neck, very itchy around ankles) days:{14} thru {18} Other ‘baseline’ symptoms (From most to least noticeable) Sleep rhythm off (up nights, sleep days); minor neuro symptoms; jaw clenching; fatigue; sinus drainage; irritation/sore throat; dry/peeling lips; joints ‘popping’ with minor movement; chemical sensitivity; dizzy standing up; gummy/irritated eyes after sleeping; skin: face dry, various minor eruptions, random itchiness (histamine); light sensitivity. Sleep {cycle day} total number hours per day {10} 16, {11} 5, {12} 5, {13} 12, {14} 6, {15} 14, {16} 12, {17} 8, {18} 10, {19} 13. ________________________________________________________________ Comments > I plan to continue to stretch this cycle out, waiting until after the resolution of a major (stressful) family related situation that will be in process for another week. ________________________________________________________________ Something to Celebrate! Great going @ DMM 2008 to Team Autoimmunity Reseaerch Foundation!!! Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 |
|||||||||
|
Joyful Board Staff
|
This is a mid-cycle update... Saturday, 26Apr08 ~ 81 days in Phase 2 ~ 19 days so far in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, without NoIRs. Nighttime in car: {11}{14} 20 min, w/ hat + 2% NoIRs.. Indoors, medium lit: {11}{14} 3 hrs, w/ hat + without NoIRs. Computer use, mostly without 40% NoIRs: {cycle day} total number hours per day {10} 11, {11} 11, {12} 10, {13} 9, {14} 7, {15} 4, {16} 7, {17} 5, {18} 10, {19} 5. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • sleep (up at night, sleeping during day) days:{10} thru {13} 4 • muscles (twitches/tension/pain: neck/back/arms) days:{10}{13} thru{19} 4 • joints (pain; different joints at different times; hip, knee, finger, TMJ) days:{11}{13} thru {16} 4 • sinuses (heavy drainage; irritated/sore throat) day:{12} 3 • skin(irritation around front of neck, very itchy around ankles) days:{14} thru {18} Other ‘baseline’ symptoms (From most to least noticeable) Sleep rhythm off (up nights, sleep days); minor neuro symptoms; jaw clenching; fatigue; sinus drainage; irritation/sore throat; dry/peeling lips; joints ‘popping’ with minor movement; chemical sensitivity; dizzy standing up; gummy/irritated eyes after sleeping; skin: face dry, various minor eruptions, random itchiness (histamine); light sensitivity. Sleep {cycle day} total number hours per day {10} 16, {11} 5, {12} 5, {13} 12, {14} 6, {15} 14, {16} 12, {17} 8, {18} 10, {19} 13. ________________________________________________________________ Comments > I plan to continue to stretch this cycle out, waiting until after the resolution of a major (stressful) family related situation that will be in process for another week. ________________________________________________________________ Something to Celebrate! Great going @ DMM 2008 to Team Autoimmunity Reseaerch Foundation!!! Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 |
|||||||||
|
Joyful Board Staff
|
Now on a (hopefully) short MP vacation... Monday, 5May08 ~ 83 days on Phase 2 ~ day 6 of MP vacation ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, with 40% NoIRs as needed. Nighttime in car: two times 20 min, w/ hat + 2% NoIRs. Indoors, medium lit: two times 3 hrs, w/ hat + without NoIRs. ________________________________________________________________ Symptoms • All symptoms tolerable • 4 • joints (pain; intermittent; hip, fingers) about 30% of the time 4 • muscles (twitches/tension/pain: neck/back/arms) about 30% of the time 4 • sinuses (heavy drainage; sinus headaches) a couple days 3 • skin(unusually itchy around ankles, on shins) a couple of days ________________________________________________________________ Comments > On MP 'vacation' due to an extension of the end point of the family situation needing my support and availability. Stopped regular MP medications on April 29th. (This is at the 10 month point in my time on the MP.) Still following all guidelines for light/D avoidance. > Sleep is now fairly normal with 7-8 hours from around 12am to 7-8am. > Symptoms have minimised with the exception of the incident with the right hip. ________________________________________________________________ Thank you! Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 |
|||||||||
|
Joyful Board Staff
|
Sunday, 1Jun08 ~ 31 days on MP break ~ back on Benicar starting today ________________________________________________________________ Light Exposure Staying @ home most of the time in low to medium lux, with 40% NoIRs as needed. ________________________________________________________________ Symptoms 2 • back pain (left side under shoulder blade) during May - MP break 2 • sinuses (constant drainage, irritated sore/throat) during May - MP break 2 • vision (both close and far vision is blurred) during May - MP break Other ‘baseline’ symptoms (From most to least noticeable) Minor neuro symptoms; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; deep fatigue in afternoons; skin: face dry, various minor eruptions, random itchiness (histamine). ________________________________________________________________ Comments > I had some inflammation issues during my break and one of the doctors I don’t usually work with from my HMO decided to order every test in the book, including a CT Scan. > From the blood tests, my ALT came up a little high at 51 units/L (ref range 5-35 units/L). Which is a really good reason to get back on the Benicar right away. We will retest this in 4-6 weeks. > Also, two UA tests run two weeks apart both showed trace amounts of blood present in the urine. A culture did not show infection, but something is not happy somewhere in the UT because the tests for Epithelial Cells & Bacteria also reported as “FEW.” I hope that whatever this is will also resolve once back on the protocol. > Since I knew from my reading on the MP site that a CT Scan was going to mean 50 times the ionizing radiation of one normal X-ray, I did not lightly decide to submit to the test. After weighing the risk of the radiation over the benefit of perhaps learning the source of these undiagnosed abdominal symptoms that have come and gone for a couple of years, and considering that it would be at no expense to me, I went ahead and had the scan done. The results should be available within the next week. > One doctor (my MP doctor) decided on a mild shingles diagnosis from the symptoms at the beginning of my break and the other doctor (my HMO doctor) was not convinced. Whatever it was, it seemed to respond to the L-Lysine (1000mg three times per day). The ‘nerve pain’ on the back, lower left rib cage still is present when standing or reclining, but it is more a dull ache than anything. That same area feels ‘tingly’ or itchy on and off. Also, when the iodine infusion was released during my CT Scan that specific area burned for a few moments. ________________________________________________________________ Something to Celebrate During my 'break' I noticed that my light sensitivity was very mild, my sleep patterns were wonderfully normal, and my mood was great even with trips to doctors during the day a couple of times. |
|||||||||
|
Joyful Board Staff
|
Sunday, 8Jun08 ~ 7 days into MP restart ~ back on Minocycline 5Jun08 ________________________________________________________________ Light Exposure Staying @ home most of the time in low to medium lux, without 40% NoIRs mostly. Daytime in car: Mon 2hrs, Wed 2hrs, Sun 30 mins; w/ hat + 2% NoIRs Indoors brightly lit: Mon 2hrs, Wed 2 hrs; w/ hat + 10% NoIRs Nighttime in car: Mon 20 mins, Fri 20 mins; 2% NoIRs ________________________________________________________________ Symptoms 4 • muscles (spasms/tension/pain: back/neck/ legs) Mon, Fri 4 • vision (close and far vision is blurry) daily 2 • sinuses (drainage; irritated/sore throat) daily Other ‘baseline’ symptoms (From most to least noticeable) Minor neuro symptoms; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; deep fatigue in afternoons; skin: face dry, various minor eruptions, random itchiness (histamine). ________________________________________________________________ Comments > So far, four days of Minocycline @ 50mg every other day. I started at 50mg because my past experience was that 25mg did not modulate the immune response enough to allow an optimal ebb and flow of IP > Being back on the Benicar is helping me to feel less inflammation symptoms. However, there seems to be more temperature deregulation events (heat waves). > CT Scan findings were mostly “unremarkable” with exception of two apparently minor items. The first is a 3mm lesion in the right kidney. I have no idea if there is any action recommended for that. I have an appointment this week to discuss the other minor finding that I will not even comment on at this point because I don’t understand enough to do so. > I am still experiencing ‘nerve pain’ on my back, along the bottom of my rib cage when standing or reclining, but it continues to be more a dull ache than anything. That same area feels ‘tingly’ or itchy on and off. > The changes in my vision came so unexpectedly that I am fairly sure it is inflammation. The OD has scheduled another exam for the 18th to see if there is an improvement after more time on the Benicar. If not, I will be needing to get glasses in order to read the signs on the freeway and street signs as well. I have never had difficulty with my far vision before now, so it's really disconcerting for me. > Light sensitivity went from minimal to significant starting around Friday (second day on Mino). ________________________________________________________________ Something to Celebrate The new MP 'community' site for us to enjoy (outside of the member reporting functions here on this study site). Many thanks to John McDonald for graciously volunteering to moderate our new MP-lifestyles.org forum! Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 |
|||||||||
|
Joyful Board Staff
|
Sunday, 15Jun08 ~ 15 days into MP restart ~ back on Minocycline 5Jun08 ________________________________________________________________ Light Exposure Staying @ home most of the time in low to medium lux, without NoIRs. Daytime in car: Wed 30 mins, Thu 1 hrs; Fri 30 mins, w/ hat + 2% NoIRs Indoors brightly lit: Wed 1 hrs, w/ hat only; Fri 30 mins, w/ hat + 10% NoIRs ________________________________________________________________ Symptoms 4 • muscles (spasms/pain: torso/legs) Wed (caused by sun/light exposure )Other ‘baseline’ symptoms (From most to least noticeable) Minor neuro symptoms; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; skin: various minor eruptions, random itchiness. ________________________________________________________________ Comments > Vision seems to be improving. > Inflammation symptoms are all back to baseline. > Light sensitivity is back at pre-break levels. ________________________________________________________________ Something to Celebrate Contagious Joy! ~ ~ One week closer to wellness! |
|||||||||
|
Joyful Board Staff
|
Saturday, 28Jun08 ~ 95 days in Phase 2 ~ 10 days in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, without NoIRs. No daytime trips this cycle. ________________________________________________________________ Symptoms 6 • muscles (spasms/pain: torso/legs) on days: {3}{4} Other ‘baseline’ symptoms (From most to least noticeable) Minor neuro symptoms; sinus drainage; irritation/sore throat; gummy/irritated eyes after sleeping; skin: various minor eruptions, random itchiness. Sleep {cycle day} total number hours per day {1} 10, {2} 9, {3} 10, {4} 10, {5} 11, {6} 12, {7} 8, {8} 12, {9} 10, {10} 8. ________________________________________________________________ Comments > Dropped the daily L-Lysine as I am not seeming to need it currently. Only adding cal/mag supplement when normal diet is lacking (3-5 days/week). > Higher temperature weather led to higher symptoms days 3-4 (only air conditioner is a window unit in the home office). ________________________________________________________________ Something to Celebrate! Felt really good & pain free on Friday... It’s nice to have a good day after those peak IP days. Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 |
|||||||||
|
Joyful Board Staff
|
Tuesday, 8Jul08 ~ 105 days in Phase 2 ~ 10 days in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, without NoIRs. No daytime trips this cycle. ________________________________________________________________ Symptoms 6 • neuro (hypersensitivity, cognitive) on days: {5}{6}{7}{10} 4 • lymph (swelling, nausea on TMJ movement) on day: {7} Other ‘baseline’ symptoms (From most to least noticeable) Moderate neuro symptoms; skin: oily, gritty, various minor eruptions, random itchiness; gummy/irritated eyes after sleeping; irritation/sore throat; sinus drainage. Sleep {cycle day} total number hours per day {1} 10, {2} 10, {3} 12, {4} 9, {5} 8, {6}10, {7} 10, {8} 7, {9} 13 {10} 2. ________________________________________________________________ Comments > Reintroduced the daily L-Lysine as I developed a canker sore on the inside of my lower lip after being off it for a week. > Skin is changing with more oil and 'grit' especially on the face. Hair has evenly thinned to less than 50% of 'normal' ... guess the hair follicles are all 'resting' at the same time! ________________________________________________________________ Something to Celebrate! Felt really good & pain free on day 8. Them bugs are a dyin'. Starting dates: Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 |
|||||||||
|
Joyful Board Staff
|
Friday, 18Jul08 ~ 115 days in Phase 2 ~ 10 days so far in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, with 40% NoIRs. No daytime trips this cycle. ________________________________________________________________ Symptoms 6 • neuro (hypersensitivity, cognitive) levels by day: 4/6/4/2/4/4/4/4/2/2 4 • esophageal (feeling of tightness, hard to swallow) on day: {6} Other ‘baseline’ symptoms (From most to least noticeable) Moderate neuro symptoms; increased light sensitivity; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; sticky palms of hands; skin: oily, gritty, various minor eruptions, random itchiness; gummy eyes after sleeping. Sleep {cycle day} total number hours per night {1} 13, {2} 7, {3} 9, {4} 8, {5} 8, {6}6, {7} 11, {8} 10, {9} 11 {10} 10. ________________________________________________________________ Comments > With the increase in neurological IP/herx, I was not able to sleep deeply on my own and have needed to go back to taking 6-12mg hydroxyzine and .67mg Valium at bedtime. > Due to the hotter weather locally, it has been more difficult to determine if changes in the antibiotic doses are the cause of my increased neurological IP. So, I will be stretching out this cycle just a little while longer before progressing into Phase 3 next cycle. > Some of the neuro IP has proven to be from an increase in light sensitivity because on day {2}, when I returned to wearing the 40% NoIRs at the computer, the worst of the symptoms began to resolve. ________________________________________________________________ Something to Celebrate! Life is good. My latest 25D test just came back at 17 ng/mL.Start Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 |
|||||||||
|
Joyful Board Staff
|
Monday, 28Jul08 ~ 125 days in Phase 2 ~ 20 days total in this cycle ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, without 40% NoIRs. No daytime trips this cycle. ________________________________________________________________ Symptoms 6 • neuro (hypersensitivity, cognitive) levels by day: 2/4/6/4/4/2/0/2/2/4 4 • muscle (pain, spasms) levels by day: 4/2/0/0/0/0/2/4/4/0 4 • eyes ( feeling irritated, gritty, loss of lower eyelashes) on days: {16-20} Other ‘baseline’ symptoms (From most to least noticeable) Moderate neuro symptoms; increased light sensitivity; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; tire easily from simple activities; skin: oily, gritty, various minor eruptions, random itchiness; gummy/gritty eyes after sleeping. Sleep {cycle day} total number hours per night {11} 13, {12} 10, {13} 8, {14} 9, {15} 9, {16} 12, {17} 11, {18} 12, {19} 4, {20} 8. ________________________________________________________________ Comments > Continued with an extension of this cycle with Minocycline @ 25mg q48h. > Due to the hotter weather locally, it continues to be difficult to determine if the lower dosage of Mino is a factor in my increased neuro IP. > Muscle pain and spasms seem to be tied directly to light activities such as cooking and turning to reach objects to the side, such as the bed lamp. > Even with more light reducing measures in place, the neuro IP is still a significant source of symptoms with the (new) throat tightness, hypersensitivity and cognitive issues coming and going with the abx cycles. ________________________________________________________________ Something to Celebrate! Our MP nurse-moderators rock! Life is good.Start Benicar: 1Jul07, Ph1: 12Jul07, ModPh1: 14Sep07, Ph2: 8Feb08 |
|||||||||
|
Joyful Board Staff
|
Thursday, 7Aug08 ~ 8 days in Phase 3 ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, without 40% NoIRs. No daytime trips this cycle. ________________________________________________________________ Symptoms 6 • muscle (pain, spasms, fatigue) levels by day: 6/2/3/5/4/4/6/4 6 • neuro (hypersensitivity, cognitive) levels by day: 6/6/6/6/4/2/6/6 4 • lymph (stiff neck, swelling) levels by day: 2/2/4/4/4/4/2/2 4 • eyes (feeling irritated, gritty, loss of lower eyelashes) on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Moderate neuro symptoms; down/bedrest more, increased light sensitivity; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; tire easily from simple activities; skin: oily, gritty, various minor eruptions, random itchiness; gummy/gritty eyes after sleeping. Sleep {cycle day} total number hours per night {1} 10, {2} 14, {3} 13, {4} 12, {5} 9, {6} 12, {7} 6, {8} 13. ________________________________________________________________ Comments > Stayed on extension of previous cycle for two more days before starting Phase 3 on July 31st. Decided to start new cycle after 8 days due to increasing levels of intolerable hypersensitivity leading to insomnia. > More bed rest and longer sleeping times (though not on the ‘correct’ schedule) seem to be necessary to minimise the muscle pain/spasms. > I have begun to use gentle soaping/rinsing of my eyelash areas daily for the blepharitis flare. > I choose to take Benicar at q4h through-out this entire cycle because I was already at a less than comfortable level of neurological IP/herx moving into Phase 3. This has really helped keep things nearer to the tolerable range for me. ________________________________________________________________ Something to Celebrate! Finally! I'm in on Phase 3! Life is always good.Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 Last edited on Sat Aug 9th, 2008 06:31 by Joyful |
|||||||||
|
Joyful Board Staff
|
Sunday, 17Aug08 ~ 18 days in Phase 3 ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, without 40% NoIRs. No daytime trips this cycle. ________________________________________________________________ Symptoms 6 • muscle (pain, spasms, fatigue) levels by day: 2/2/2/2/4/4/4/4/4/4 6 • neuro (hypersensitivity, cognitive) levels by day: 6/4/4/4/6/6/6/6/4/4 6 • lymph (stiff neck, swelling) levels by day: 2/6/4/4/6/6/6/4/4/4 4 • eyes (feeling irritated, gritty, red at base of eyelashes) on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Moderate neuro symptoms; difficult to get to sleep; tire easily from simple activities; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; light sensitivity; skin: oily, gritty, various minor eruptions, random itchiness; gummy/gritty eyes after sleeping. Sleep {cycle day} total number hours per night {1} 10, {2} 9, {3} 9, {4} 6, {5} 11, {6} 4, {7} 7, {8} 10, {9} 10, {10} 3. ________________________________________________________________ Comments > Stayed low activity to minimise the muscle pain/spasms, but didn’t get as much sleep. More hours at the computer. > Continued gentle soaping/rinsing of eyelash areas daily for the blepharitis flare. > Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable. ________________________________________________________________ Something to Celebrate! Community life is happening over on MP-Lifestyles.org Thanks, I needed that.Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Wednesday, 27Aug08 ~ 28 days in Phase 3 ~ ________________________________________________________________ Light Exposure Stayed @ home most of the time in low to medium lux, without 40% NoIRs. Daytime trips on days {1} and {9} this cycle. Very sensitive to sunlight in eyes, on skin. Found I needed both wraparound on top of fitover 2% NoIRs for daytime in car. ________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) levels by day: 4/4/4/6/6/6/4/2/6/8 8 • neuro (hypersensitivity, cognitive) levels by day: 6/2/4/4/4/4/4/4/6/8 6 • lymph (stiff neck, swelling) levels by day: 2/2/2/6/6/6/4/4/4/2 4 • eyes (feeling irritated, gritty, red at base of eyelashes) on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Moderate neuro symptoms; difficult to get to sleep; tire easily from simple activities; eyes feel especially dry, easily irritated; dizziness on standing; numbness in arms upon waking in morning; light sensitivity; skin: oily, gritty, various minor eruptions, random itchiness; gummy/gritty eyes after sleeping. Sleep {cycle day} total number hours per night {1} 12, {2} 6, {3} 15, {4} 6, {5} 14, {6} 7, {7} 11, {8} 7, {9} 11, {10} 8. ________________________________________________________________ Comments > Trip on day 1 was avoidable, but enjoyable. Stayed low activity from then on until doctor’s appointment on day 9, awoke on day 10 to nasty stabbing pain behind right shoulder blade. > Continued gentle soaping/rinsing of eyelash areas daily for the blepharitis. > Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable. ________________________________________________________________ Something to Celebrate! 2 weeks to the 6th Annual Congress on Autoimmunity Thanks, Trevor & team for all your hard work!Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Saturday, 6Sep08 ~ 38 days in Phase 3 ~ ________________________________________________________________ Light Exposure Stayed @ home; most of the time in low to medium lux, without NoIRs. ________________________________________________________________ Symptoms 6 • muscle (pain, spasms, fatigue) levels by day: 6/4/2/4/6/6/4/4/4/4 6 • neuro (hypersensitivity, cognitive) levels by day: 6/6/4/4/4/4/4/4/4/2 6 • lymph (stiff neck, swelling) levels by day: 2/6/2/4/6/4/4/4/4/4 4 • eyes (feeling irritated, gritty, red at base of eyelashes) on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Tire easily from simple activities; light sensitivity; dizziness on standing; any activity involving movement leads to feeling heartbeat in one or both ears; numbness in arms upon waking in morning; transient pain in finger joints; transient twitching in forearm/quad muscles; gummy/stinging eyes after sleeping; feeling of throat tightening; difficult to get to sleep; skin: oily, gritty, various minor eruptions, random itchiness, burning on bottoms of feet in morning. Sleep {cycle day} total number hours per night {1} 12, {2} 8, {3} 11, {4} 12, {5} 11, {6} 10, {7} 6, {8} 16, {9} 14, {10} 12. ________________________________________________________________ Comments > This is the third cycle at this level and I am still experiencing plenty of IP. One indication is that even on the last couple days of this cycle I have had lymph swelling under my jaw line, along with lymph swelling in other areas as well. > Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable. Tried less (q6h) Benicar on days {6} thru {9} and it didn't seem worth it yet. More coordination issues (spilling things) and more cognitive problems (mental errors) than I want to deal with while having fun on this newly developing 'MPKB Project.' ________________________________________________________________ Something to Celebrate! New MP Knowledge Base Project wiki Thanks to everyone considering helping out!Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Tuesday, 16Sep08 ~ 48 days in Phase 3 ~ ________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, without NoIRs. One daytime trip to doctors on day (10}; used 2%wraps+2%fit-overs in sunlight, plus all other usual precautions to protect skin from light/heat; all direct sun exposure was just a few brief minutes to get from vehicle to buildings and back. ________________________________________________________________ Symptoms 4 • muscle (pain, spasms, fatigue) ~ levels by day: 2/4/4/2/4/2/2/0/4/0 4 • neuro (hypersensitivity, cognitive) ~ levels by day: 2/4/4/4/4/2/4/4/4/4 4 • lymph (stiff neck, swelling) ~ levels by day: 2/2/2/4/4/2/2/2/4/2 4 • eyes (feeling irritated, gritty, red at base of eyelashes) on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Tire easily from simple activities; light sensitivity; dizziness on standing; any activity involving movement for more than a couple minutes leads to feeling my heartbeat in one or both ears; numbness in arms upon waking in morning; transient pain in finger joints; transient twitching in forearm/quad muscles; gummy/stinging eyes after sleeping; feeling of throat tightening; difficult to get to sleep; skin: oily, gritty, various minor eruptions, random itchiness, burning on bottoms of feet in morning. Sleep {cycle day} total number hours per night {1} 12, {2} 11, {3} 10, {4} 6, {5} 12, {6} 6, {7} 11, {8} 14, {9} 6, {10} 13. ________________________________________________________________ Comments > Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable. Tested using less (q6h) on day {9} and again experienced more coordination issues (spilling things), inflammation (aches and pains) and cognitive problems (mental errors). > Since entering Phase 3 two months ago I have observed a minor re-occurrence of a Bell's Palsy symptom I first experienced in 1980 following a likely Bb exposure. The symptom is that my right eye is open more than my left eye. Interesting. > This is the fourth cycle at this level and I still have enough IP to want to stay at my current (very low) antibiotic dosage levels. ________________________________________________________________ Something to Celebrate! Porto presentations were a great success! Congratulations to 'Team MP!'Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Monday, 6Oct08 ~ 68 days in Phase 3 ~ Something to Celebrate! The Marshall Protocol has given me hope for recovery. Much thanks to 'Team MP!'________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, without NoIRs. One daytime trip to visit with family on day (18}; used 2%wraps+2%fit-overs in sunlight, plus all other usual precautions to protect skin from light/heat; all direct sun exposure was in vehicle (driving into sunset) and indirect daylight through windows in home. I did have painful leg cramps a couple of hours afterwards. ________________________________________________________________ Symptoms 6 • muscle (pain, spasms, fatigue) ~ levels by day: 2/2/2/2/2/2/2/2/2/2/2/2/2/2/2/2/2/6/0/0 7 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 4/2/2/2/6/6/6/4/7/6/6/4/4/4/4/6/4/4/2/2 6 • lymph (stiff neck, swelling) ~ levels by day: 0/4/4/2/4/6/6/4/6/6/6/6/4/3/4/4/4/4/2/2 4 • eyes (feeling irritated, gritty, red at base of eyelashes) ~ on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Tire easily from simple activities; light sensitivity; dizziness on standing; any full body movement for over a minute leads to feeling my heartbeat in one or both ears; transient twitching in forearm/quad/other muscles; gummy/stinging eyes after sleeping; difficult to get to sleep; skin: oily, gritty, various minor eruptions, random itchiness, numbness in arms upon waking in morning; burning on bottoms of feet in morning; transient pain in finger joints; feeling of throat tightening. Sleep {cycle day} total number hours per night {1} 8, {2} 11, {3} 6, {4} 11, {5} 8, {6} none, {7} 4, {8} 8, {9} 8, {10} none, {11} 15, {12} 5, {13} 12, {14} none, {15} 17, {16} 9, {17} 10, {18} 13, {19} 8, {20} 8. ________________________________________________________________ Comments > Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable. I probably could have spread out the Benicar doses more, but I was happy to continue with a period of 'lighter' symptoms right now. > This is the sixth cycle at this level and I still have enough IP to want to stay at my current (very low) antibiotic dosage levels. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Thursday, 16Oct08 ~ 78 days in Phase 3 ~ Something to Celebrate! I do not feel discouraged at all. I'm thankful for my friends at mp-lifestyles.org too!________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, without NoIRs. One daytime trip to visit with doctor on day {3}; used 2%wraps+2%fit-overs in sunlight, plus all other usual precautions to protect skin from light/heat; all direct sun exposure was in vehicle. I had painful cramps around ribcage a couple of hours afterward exposure. ________________________________________________________________ Symptoms 6 • muscle (pain, spasms, fatigue) ~ levels by day: 2/2/4/6/2/2/4/2/2/4 8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 4/4/6/4/8/0/4/2/2/4 6 • lymph (stiff neck, swelling) ~ levels by day: 6/4/4/2/6/6/4/6/2/4 4 • eyes (feeling irritated, gritty, red at base of eyelashes) ~ on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Tire easily from simple activities; light sensitivity; dizziness on standing; any full body movement leads to feeling my heartbeat in one or both ears; numbness in arms upon waking in morning; difficult to get to sleep; gummy/stinging eyes after sleeping; skin: oily, gritty, various minor eruptions, random itchiness; transient twitching in forearm/quad/other muscles; burning on bottoms of feet in morning. Sleep {cycle day} total number hours per night {1} 6, {2} 6, {3} 6, {4} 8, {5} 8, {6} 12, {7} 6, {8} 20, {9} 8, {10} 9. ________________________________________________________________ Comments > Continued to take Benicar at q4h this cycle to keep level of neurological IP/herx tolerable. > I took an 'electronic holiday' from the computer on days {8}{9}{10}. I found I was able to sleep more without the time on the computer. On day {10} I tried to do more than rest in bed and found it was very taxing in my current state. > I have new symptom to track with acne lightly sprinkling all of my lower back. Looks kind of like the measles. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Sunday, 26Oct08 ~ 88 days in Phase 3 ~ Something to Celebrate! PaulAlbert is doing a great job leading the charge over on the mpkb.mp-dev.com site. ________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, without NoIRs. One daytime trip for medical tests on day {8}; used 2%wraps+2%fit-overs in sunlight, plus all other usual precautions to protect skin from light/heat. ________________________________________________________________ Symptoms 6 • muscle (pain, spasms, fatigue) ~ levels by day: 6/4/4/2/6/4/4/2/2/4 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 2/4/4/4/6/4/4/2/2/4 6 • lymph (stiff neck, swelling) ~ levels by day: 4/4/4/6/4/4/2/2/2/4 4 • eyes (feeling irritated, gritty, red at base of eyelashes) ~ on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Tire easily from simple activities; light sensitivity; dizziness on standing; any full body movement leads to feeling my heartbeat in one or both ears; ears hurt and feel swollen on the inside; swelling around upper right molar; numbness in arms upon waking in morning; difficult to get to sleep; gummy/stinging eyes after sleeping; skin: oily, gritty, various minor eruptions, random itchiness; transient twitching in forearm/quad/other muscles; burning on bottoms of feet in morning. Sleep {cycle day} total number hours per night {1} 11, {2} 7, {3} 7, {4} 12, {5} 7, {6} 13, {7} 14, {8} 7, {9} 13, {10} 8. ________________________________________________________________ Comments > No problems returning to Benicar at q6h this cycle. Or maybe I'm just getting more stoic about the neurological IP/herx? > Any time I attempt full body movement or standing/bending, etc., it leads to feeling my heartbeat in one or both ears, an awareness of muscle weakness, and sometime shortness of breath as well. My ears hurt and feel swollen on the inside. There has also been swelling around an upper right molar since changing out one of the antibiotics. > My sleep schedule is upside-down again. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Wednesday, 5Nov08 ~ 98 days in Phase 3 ~ Something to Celebrate! Dr. Marshall's being honored with a keynote at Gene 2008 - China in December! ________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, without NoIRs. ________________________________________________________________ Symptoms 8 • lymph (stiff neck, swelling) ~ levels by day: 2/6/8/6/4/4/4/6/4/4 6 • muscle (pain, spasms, fatigue) ~ levels by day: 2/2/4/6/6/4/2/2/2/4 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 2/4/4/2/6/2/2/2/2/2 4 • eyes (feeling irritated, gritty, red at base of eyelashes) ~ on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Tire easily from simple activities; light sensitivity; dizziness on standing; ears hurt and feel swollen on the inside; numbness in arms upon waking in morning; difficult to get to sleep; any full body movement leads to feeling my heartbeat in one or both ears; swelling around upper right molar; gummy/stinging eyes after sleeping; skin: oily, gritty, various minor eruptions, random itchiness. Sleep {cycle day} total number hours per night {1} 10, {2} 10, {3} 6, {4} 10, {5} 9, {6} 11, {7} 9, {8} 9, {9} 10, {10} 11. ________________________________________________________________ Comments > After getting my last lab tests, I felt I should go back to Benicar at q4h on day {4} of this cycle. I tried ramping up the Deme from 25mg to 50mg, but it seemed that the IP/herx was too strong, especially in the light of the recent blood work. > I have had three times this cycle where I was actually participating in a larger social gathering and I was enjoying myself. This was very special to me. Yes, I had to recover for a day or so each time, but it was worth it. > It is possible that I caught a mild case of the flu from one of people over to my house last weekend... it didn't really have the same 'signature' symptoms as IP. In any case, over the past 3 days I have tried to get more bed rest and watch my diet carefully, which seems to be helping. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Saturday, 15Nov08 ~ 108 days in Phase 3 ~ Something to Celebrate! Life is good! My heart is full of Joy!________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, without NoIRs. Did venture out in late afternoon on day {9} to run a few urgent errands. ________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 2/4/6/8/6/4/2/2/2/6 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 2/4/4/4/6/4/4/6/4/4 4 • lymph (stiff neck, swelling) ~ levels by day: 2/4/4/4/2/4/2/2/2/4 4 • eyes (feeling irritated, gritty, red at base of eyelashes) ~ on days: {all} Other ‘baseline’ symptoms (From most to least noticeable) Marked increase in back pain when active, i.e., doing food prep in kitchen; ears hurt and feel swollen on the inside; abdominal cramps; post nasal drip; skin: more itchy, oily, gritty, various minor eruptions; swelling around upper right molar; gummy/stinging eyes after sleeping; tire easily from simple activities; light sensitivity; dizziness on standing; numbness in arms upon waking in morning; difficult to get to sleep. Sleep {cycle day} total number hours per night {1} 8, {2} 13, {3} 10, {4} 8, {5} 17, {6} 8, {7} 8, {8} 10, {9} 8, {10} 15. ________________________________________________________________ Comments > I'm feeling just good enough to attempt some long-neglected tasks around the house and then I over-do to the point of having to rest up again. Sigh. > I did brave driving again on day {9}. I seemed to do ok, but I was very cautious, especially considering I haven't driven our truck (or car) for many months due to my concerns over slow-reflexes and vision issues. It felt good to be out under my own power again. > Itchy shins have returned. I'm trying swabbing some apple cider vinegar on them after my showers and it seems to be keeping it under control. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
|
|||||||||
|
Joyful Board Staff
|
Just a quick summary of all my 25-D test results to date: Test #1 04Jun07 25D= 32 ng/mL {Pre-MP, D supplemented} Test #2 06Aug07 25D= 26 ng/mL {1 month on MP} Test #3 05Oct07 25D= 39 ng/mL {3 months on MP} Test #4 05Dec07 25D= 27 ng/mL {5 months on MP} Test #5 05Feb08 25D= 29 ng/mL {7 months on MP} Test #6 05Apr08 25D= 18 ng/mL {9 months on MP} Test #7 12Jul08 25D= 17 ng/mL {11 months on MP} Test #8 24Oct08 25D= 15 ng/mL {14 months on MP} So far, it seems to keep going in the right direction! Details from last Vitamin D test (Quest, most likely): Value Component Reference Range 15 VITAMIN D, 25-HYDROXY Range 30-100 ng/mL Result (L) Yeay!15 VIT D, 25-OH, D3 NOT ESTABLISHED ng/mL <4 VIT D, 25-OH, D2 NOT ESTABLISHED ng/mL I think the D2 of <4 ng/mL means I have succeeded in avoiding supplemental forms of Vitamin D. Last edited on Wed Nov 26th, 2008 10:44 by Joyful |
|||||||||
|
Joyful Board Staff
|
Yogurt discussion didn't move to mp-lifestyles site. Instead, see Dr. Marshall's Perspectives forum here: http://www.marshallprotocol.com/view_topic.php?id=12969&forum_id=39. Thanks. Last edited on Mon Nov 24th, 2008 09:16 by Joyful |
|||||||||
|
Joyful Board Staff
|
Tuesday, 25Nov08 ~ 118 days in Phase 3 ~ Something to Celebrate! Life is good! My heart is happy!________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, without NoIRs. Ventured out early evening on day {6} and had major neurological reaction to overhead fluorescent lights. ________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 2/4/6/4/2/2/2/2/2/8 8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 2/2/6/6/4/8/6/8/6/4 6 • lymph (stiff neck, swelling) ~ levels by day: 4/2/6/6/4/4/2/6/6/4 Other ‘baseline’ symptoms (From most to least noticeable) Marked increase in back pain when active, i.e., doing food prep in kitchen; ears hurt and feel swollen on the inside; swelling around upper right molar; post nasal drip; light sensitivity; difficult to get to sleep; skin: more itchy, oily, gritty, various minor eruptions; gummy/stinging eyes after sleeping; tire easily from simple activities; abdominal cramps; dizziness on standing; numbness in arms upon waking in morning. Sleep {cycle day} total number hours per night {1} 6, {2} 14, {3} 6, {4} 9, {5} 13, {6} 12, {7} 12, {8} 13, {9} 8, {10} 8. ________________________________________________________________ Comments > New symptoms with small increase in third antibiotic in Phase 3: dark circles under eyes on days {2} and {3}, along with minor/transient pain in my finger joints. > The eye irritation symptoms have dropped in intensity (still present). Yeay! > Itchy shins are gone, but minor skin blemishes are still around various areas including a couple of small new raised rough patches. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Friday, 5Dec08 ~ 128 days in Phase 3 ~ Something to Celebrate! So much to be Thankful for! So much to be Joyful about!________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, without NoIRs. Daytime doctor's appointments on day {7}, {9} and {10}, used extra Benicar, more careful with NoIRs, didn't have as bad a time afterwards. Used 2% fitover NoIRs on top of 2% wraparound NoIRs when outside or in the car. ________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 4/6/4/4/4/4/8/8/6/6 8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 6/6/6/6/8/6/8/8/6/4 8 • lymph (stiff neck, swelling) ~ levels by day: 2/6/6/6/6/6/8/6/4/6 Other ‘baseline’ symptoms (From most to least noticeable) Marked increase in back pain when active; not rested after sleeping; awake nights, sleeping during day; ears hurt and feel swollen on the inside; swelling around upper right molar; post nasal drip; light sensitivity; difficult to get to sleep; skin: gritty, various minor eruptions; gummy/stinging eyes after sleeping; tire easily from simple activities; dizziness on standing; numbness in arms upon waking in morning. Sleep {cycle day} total number hours per night {1} 8, {2} 8, {3} 8, {4} 11, {5} 11, {6} 9, {7} 10, {8} 5, {9} 6, {10} 15. ________________________________________________________________ Comments > This second cycle with a small increase in Phase 3 antibiotic (3rd) proved to be too much. Muscle spasms, neurological symptoms increased beyond tolerable on day {7) and I spent the rest of the cycle practicing some my less familiar 'tools' to lower the IP/herx. These included frequent low dose Minocycline (it helped) and then Quercetin (also seemed to help). > My body seems to be working very, very hard dealing with the level of IP and I have spent a lot more time in bed resting with very low lighting. I'm wanting to do things in kitchen, but quickly in pain in the mid-back and feeling exhausted, needing to lay down. > For some of this cycle I could not sleep at night very well, if at all. Even more than usual I feel tired even when I have had some deep sleep. > Early morning (2am) on day {7} I was feeling chest pain and decided to visit the emergency room for to check it out as it didn't feel like the typical muscle spasms I experience. Their testing didn't find any heart issues (whew!). In retrospect it seems it could have been a mild case of pleurisy (inflammation around lungs). Advil seemed to relieve the inflammation pain (only took it for two days). I had a couple of days dealing with reflux after the E.R. trip. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Saturday, 13Dec08 ~ 136 days in Phase 3 ~ Something to Celebrate! So much to be Thankful for! So much to be Joyful about!________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, sometimes NoIRs. No trips out. ________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 4/4/2/4/2/4/6/8 8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 4/4/4/4/2/4/8/6 8 • lymph (stiff neck, swelling) ~ levels by day: 4/8/4/4/2/4/6/4 Other ‘baseline’ symptoms (From most to least noticeable) Increase in back pain when active; not rested after sleeping; canker sores developing; ears hurt and feel swollen on the inside; swelling around upper right molar; post nasal drip; light sensitivity; tire easily from simple activities; dizziness on standing; numbness in arms upon waking in morning; TMJ pain; skin: gritty, various minor eruptions; gummy/stinging eyes after sleeping. Sleep {cycle day} total number hours per night {1} 8, {2} 7, {3} 11, {4} 14, {5} 15, {6} 8, {7} 11, {8} 11. ________________________________________________________________ Comments > Still spending a lot more time in bed resting with very low lighting. I'm trying to do things in kitchen, but quickly find myself in pain in the mid-back and feeling exhausted, needing to lay down. > I had some acid reflux (GERD) and constipation. I can hardly remember ever having these before, so I researched causes and did my best to clear these symptoms quickly. I found that Valium can contribute to GERD, and I had taken quite a bit extra during the last cycle, so I dropped it completely for a few days. Also, I remembered that hydroxyzine could be used as a anti-nausea drug--so, since I already had it, I took more until the reflux stopped. I used stevia w/ inulin in warm milk & cocoa to sooth my throat and help get things moving. I can't imagine the misery of having these symptoms constantly--rough for sure. > Lots of feelings of 'full lymph' all over, but especially around the neck. I tried stretching out one of the 48 antibiotic cycles, and dropping the 3rd antibiotic one cycle to lower IP/herx without success. These seem like more clues that my immune system is starting to work on it's own and I need the antibiotics for their modulatory effect now. > Decided to decrease Phase 3 antibiotic (3rd) by half, shorten cycles from 10 down to 8 days each, and continue to keep Quercetin as an option if needed. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Tuesday, 23Dec08 ~ 146 days in Phase 3 ~ Something to Celebrate! Happy New Year! So much to be Joyful about!________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, sometimes NoIRs. One trip out on day {6}. All usual coverings, precautions. Exposure only to and from appointment (30 minutes total as passenger). ________________________________________________________________ Symptoms 6 • muscle (pain, spasms, fatigue) ~ levels by day: 4/4/4/6/6/4/6/4/4/2 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 4/4/4/2/4/4/6/4/2/2 8 • lymph (stiff neck, swelling) ~ levels by day: 8/8/6/4/6/4/6/4/4/6 Other ‘baseline’ symptoms (From most to least noticeable) Increase in back pain when active; TMJ pain; ears hurt and feel swollen on the inside; not rested after sleeping; swelling around upper right molar; post nasal drip; light sensitivity; tire easily from simple activities; dizziness on standing; numbness in arms upon waking in morning; skin: gritty, various minor eruptions; gummy/stinging eyes after sleeping. Sleep {cycle day} total number hours per night {1} 14, {2} 6, {3} 15, {4} 6, {5} 9, {6} 8, {7} 10, {8} 7, {9} 10, {10} 12. ________________________________________________________________ Comments > Everything is just about the same with the exception that the end of the cycle seemed to be a little more tolerable using some hydroxyzine (antihistamine for itchy skin). > Plan is to take a short break from antibiotics for next couple weeks. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Saturday, 10Jan09 ~ 163 days in Phase 3 ~ Something to Celebrate! A Hope-filled Healthy New Year To All! So much to be Joyful about!________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, sometimes NoIRs. Trips out on days {12}{16}{20}{22}{23}{25}{26}{27}. All usual coverings, precautions. ________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 4/6/4/4/4/8/6/7/8/8/6/4/6/6/4/6/6 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 4/2/6/4/4/4/2/2/4/6/2/4/6/4/4/2/4 6 • lymph (stiff neck, swelling) ~ levels by day: 4/2/2/2/2/2/2/2/4/6/4/2/6/2/2/2/6 Other ‘baseline’ symptoms (From most to least noticeable) Back pain (left side, near liver/kidneys) all the time; skin: itchy, various minor eruptions; not rested after sleeping; tire easily from simple activities; post nasal drip; TMJ pain; ears hurt and feel swollen on the inside; gummy/stinging eyes after sleeping; short periods of joint pain (fingers, knees); light sensitivity; dizziness on standing; numbness in arms upon waking in morning; swelling around upper right molar. Sleep {cycle day} total number hours per night {11} 10, {12} 9, {13} 12, {14} 10, {15} 13, {16} 6, {17} 12, {18} 8, {19} 8, {20} 6, {21} 8, {22} 7, {23} 9, {24} 12, {25} 4, {26} 11, {27} 6, {28} 15. ________________________________________________________________ Comments > Something interesting. In the past week I have enjoyed some homemade salad dressing containing fresh-pressed raw garlic a couple of times. Within 3-6 hours after eating it, I would have a short period of joint pain in my fingers or knees. > During days {11} thru {28} of this cycle, I was on an MP break. Symptoms continued while on my break, giving me hope that my immune system is starting to function on it's own. > Plan is to return to same Phase 3 antibiotic levels as before this short break. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Sunday, 18Jan09 ~ 171 days in Phase 3 ~ Something to Celebrate! The new MP knowledge base is almost 25% populated!________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, sometimes NoIRs. Trips out on days {1} 7 hours; {2} 4 hours. All usual coverings, precautions. ________________________________________________________________ Symptoms 6 • muscle (pain, spasms, fatigue) ~ levels by day: 4/6/4/4/2/4/4/4 5 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 2/4/5/4/4/2/2/2 4 • lymph (stiff neck, swelling) ~ levels by day: 2/4/2/2/4/2/2/2 Other ‘baseline’ symptoms (From most to least noticeable) Skin: very itchy, various minor eruptions; not rested after sleeping; light sensitivity; dizziness on standing; tire easily from simple activities; back pain (left side, near liver/kidneys) only when sitting up or active; watery/stinging eyes after sleeping; post nasal drip; swelling around upper right molar; ears hurt and feel swollen on the inside; TMJ pain; short periods of joint pain (fingers, knees); numbness in arms upon waking in morning. Sleep {cycle day} total number hours per night {1} 8, {2} 12, {3} 12, {4} 11, {5} 8, {6} 12, {7} 10, {8} 7. ________________________________________________________________ Comments > Overall, much less inflammation now that I am back on the antibiotics. > I am trialing the use of Quercetin as suggested in this article on Managing immunopathology (IP). > I seem more mentally alert in the evenings and then find it hard to get started before noon each day. Still trying to keep to 'normal' sleeping hours as much as possible, but I'm back to using small amounts of hydroxyzine and Valium to get to sleep and stay asleep. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Sunday, 25Jan09 ~ 178 days in Phase 3 ~ Something to Celebrate! Life is good! My 25-D tested below th 12 ng/mL threshold!!! (Quest)________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, sometimes NoIRs. Trips out on days {2}{5}. In sun only to/from stores, etc. All usual coverings, precautions. ________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 2/2/6/8/8/8/8 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 2/4/6/4/4/6/4 6 • lymph (stiff neck, swelling) ~ levels by day: 2/2/4/4/4/6/6 Other ‘baseline’ symptoms (From most to least noticeable) Back pain (left side, near liver/kidneys) only when sitting up or active; skin: lower legs itchy, various minor eruptions; tire easily from simple activities; not rested after sleeping; light sensitivity; short periods of joint pain (fingers, knees); dizziness on standing; watery/stinging eyes after sleeping; post nasal drip; swelling around upper right molar; ears hurt and feel swollen on the inside; TMJ pain; numbness in arms upon waking in morning. Sleep {cycle day} total number hours per night {1} 10, {2} 12, {3} 13, {4} 8, {5} 10, {6} 12, {7} 9. ________________________________________________________________ Comments > Just got email from my doctor with the last 25-D results: 11 ng/mL. > Quercetin seems to be helping with neurological symptoms. Guaifenesin seems to be keeping sinuses almost completely clear. > Day {2} my ankles got unusually itchy. Ugh. Felt pretty irritable all around. Might have been the natural light exposure—it didn’t seem too bad at the time as it was overcast that day. > On day {3} I bit the inside of my cheek really hard. The good news is that it healed much more rapidly than I am used to after getting ill (<4 days). > Pain in back is still above the tolerable level, even with new palliatives. Will next try to lower IP by adjusting the antibiotics. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Thursday, 5Feb09 ~ 189 days in Phase 3 ~ Something to Celebrate! Life is good! ________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, sometimes NoIRs. Trips out on days {1}{3}{4}{11}. Direct sun only to/from buildings. All usual coverings, precautions. ________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 6/4/6/4/6/2/6/6/6/6/8 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 2/4/6/4/6/2/4/6/6/4/4 6 • lymph (stiff neck, swelling) ~ levels by day: 4/4/6/4/4/6/4/4/4/4/2 Other ‘baseline’ symptoms (From most to least noticeable) Back pain (left side) only when sitting up or active; short periods of joint pain (fingers, knees, elbow); hair: strands thinner, increased loss; skin: lower legs itchy, various minor eruptions; temp: feeling cooler all the time; low initiative; tire easily from simple activities; not rested after sleeping; numbness in arms upon waking in morning; swelling around upper right molar; light sensitivity; dizziness on standing; watery/stinging eyes after sleeping; post nasal drip; ears hurt and feel swollen on the inside; TMJ pain. Sleep {cycle day} total number hours per 24-hr period {1} 11, {2} 8, {3} 11, {4} 12, {5} 8, {6} 11, {7} 12, {8} 10, {9} 9, {10} 11, {11} 10. ________________________________________________________________ Comments > I am so grateful that a small dose of hydroxyzine (antihistamine) is all I need to take when my ankles and/or shins get too itchy. I try to take as little as possible to palliate symptoms, but if I don't take it at bedtime I can't seem to get the brain to shut down for the night. > Ended trials of both Quercetin and Guaifenesin. Now I know how useful they can be if needed, but I stopped both as my symptoms aren't that bad right now. > My chiropractor looked over December's chest X-ray and recommended a DEXA scan. (I tried to get a referral for one at the start of the MP, but my PCP thought I was 'too young' to need it.) The X-ray showed both calcification around some lumbar and a pocket of calcification in my right lung. I don't ever in my life remember having pnuemonia or major lung issues, so that is interesting. > A new upper body Thermographic Study done this past week confirmed continued infection in upper right molar (#2). Also confirmed excess heat over mid-back lumbar. The surprise finding was mild thyroid hypertrophy of the right-hand thyroid. I will discuss the results with both my doctors during appointments this week. > Adjusting antibiotic doses has helped some with bringing symptoms levels lower into the tolerable range. But, as others have previously mentioned, when you start to feel good it is hard to want to return to feeling bad (more IP) again. ________________________________________________________________ Ph1: Jul07; ModPh1: Sep07; Ph2: Feb08; Ph3: Aug08 |
|||||||||
|
Joyful Board Staff
|
Sunday, 15Feb09 ~ 199 days in Phase 3 ~ Cycle 18, day {10} _________________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, rarely NoIRs. Trips out on days {1}{4}{7}. Direct sun only to/from buildings. All usual coverings, precautions , doubled 2% NoIRs in sun. _________________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 6/6/4/6/6/4/4/4/4/4 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 6/6/4/2/2/4/4/2/2/4 6 • lymph (stiff neck, swelling) ~ levels by day: 6/4/2/2/2/2/2/2/2/4 • all other baseline symptoms were level 3 or less • Other ‘baseline’ symptoms (From most to least noticeable) Back pain (left side) only when sitting up or active; dry lips; numbness in arms upon waking in morning; skin: lower legs itchy, various minor eruptions; tire easily from simple activities; not rested after sleeping; light sensitivity; short periods of joint pain (fingers, knees); dizziness on standing; watery/stinging eyes after sleeping; post nasal drip; swelling around upper right molar; ears hurt and feel swollen on the inside; TMJ pain. Sleep {cycle day} total number hours per 24-hr period {1} 8, {2} 14, {3} 12, {4} 8, {5} 13, {6} 8, {7} 6, {8} 10, {9} 11, {10} 8. _________________________________________________________________________ Comments > The results of DEXA scan are in (see below). My doctor was very concerned and wanted me to supplement with vitD or take Fosamax. I was successful in getting him to consider: (1) Fosamax is known to make bones brittle, (2) since being ill I have had low estrogen (peri meno-pauseal) & but now my cycles were regular for last 5 months, (3) I had high 1,25D prior to staring MP & this may have affected bone density, (4) my risk of fracture is low because I am careful & mostly sedentary, (5) I have not been taking my cal/mag supplement faithfully (hardly at all). So he agreed with plan to actually take (not just have on shelf) Cal/Mag @ RDA levels & retest in 2 yrs. > The latest TSH lab value was high at 7.49 mIU/L. Some more tests were ordered but I think the best plan now is to do no more than try to keep IP low in the confidence that the hormones will rebalance as the MP does it's work. _________________________________________________________________________ DEXA scan results: 2/9/2009 L1-L4 Spine: 0.903 g/cm2 (T: -2.4, Z: -2.1). Left Femur/Neck: 0.767 g/cm2 (T: -1.9, Z: -1.2). Left Femur/Total: 0.793 g/cm2 (T: -1.7, Z: -1.3). Right Femur/Neck: 0.683 g/cm2 (T: -2.6, Z: -1.8). {note: right hip is only joint that has ever had pain} Right Femur/Total: 0.742 g/cm2 (T: -2.17, Z: -1.7). _________________________________________________________________________ |
|||||||||
|
Joyful Board Staff
|
Looking up more information on the thyroid at the American Association of Clinical Endocrinologists site...Clues To Solving The Thyroid/Menopause Mystery This all reminds me of Amy Proal's talk in Porto last year! |
|||||||||
|
thelymelight Member in Phase 1 
|
Joyful, Have your DEXA scan results improved or become worse since being on MP and no Vit D?. I have Osteopenia and see an Endo who specializes in Bone Health/Densities..she too is concerned that my D levels are so low and thinks my bone health will get worse b/c I am avoiding D...But my estrogen levels are good, and I believe both calcium and estrogen play a larger part in bone density than does Vit D. B/c you are peri-menopause have you considered using bio-identical hormones (in cream form compounded by a pharmacist) to keep your estrogen levels normal and thus prevent further bone loss and menopausal sxs? I have also read that sometimes Progesterone alone can help control menopausal sxs...as often the issue isn't not enough estrogen, but too much estrogen in relation to progesterone, (not enough progesterone in the body) causing estrogen dominance, due to xenoestrogens from our environment, mimicking estrogens in our body. Lisa |
|||||||||
|
Joyful Board Staff
|
Hi Lisa! I have never had a DEXA scan before this month. I asked for one before starting the MP. And I should have pushed for it because my 1,25D level was high enough to indicate that I was at risk for calcium to be freed from the bones and subsequently redepositing in the soft tissue (for example, in the kidneys (stones) or adrenal glands, etc.). Endocrinologists worry about low D levels because they have been exposed to studies that show correlation to disease states. Sometimes you can reason with them by reminding that the disease state may be the cause of the low D, not the result. By definition "correlation is not equal to causation." Based on the research Dr. Marshall has done, I am convinced that the chronic excess 1,25D in my body from years of this unresolved infection by the Th1 microbiota is the reason for my lower bone density at this time. Failing to get sufficient calcium on a regular basis is the biggest mistake I have made. At the beginning of the protocol I had checked over my diet and thought I was probably getting enough, but with the IP symptoms of fatigue and low initiative I was no longer eating the same diet. I have started my new level of supplementation as of 4 days ago and I am already noticing some changes (less cravings for milk, salt, cheese). In the past five months I have not had any 'hot flash' type symptoms (high FSH) or other 'menopausal' symptoms. My estrogen and progesterone seem to be normalizing on their own. My cycles have been about 4 weeks long with all the right 'signs' during each part of the cycle. I don't think using hormones to help my bone density is the right approach. I believe I need to get rid of the infection that feeds the chronic inflammation so my own body will produce the right hormones. Thank you for your input on bio-identical hormones. I did read Dr. Lee's book about 10 years ago and I understand a little about estrogen dominance and that environmental sources of chemicals that mimic estrogen can be a problem. At that time I eliminated as many of those sources as possible, as I continue to do to this today. At that time I also tried natural progesterone cream. I had no idea back then that progesterone suppresses your immune system (lowering inflammation, making you feel better). So I was confused when I had my friend try it and she got horrible fungal infections in her throat (thrush) from using it. I now know her immune system was already compromised so badly that adding the progesterone simply allowed the fungus to get the upper hand.  Isn't great that the MP is addressing the actual source of our hormonal imbalances (chronic inflammation due to unresolved infection)? Better than just covering up stuff, I think. |
|||||||||
|
thelymelight Member in Phase 1
|
Joyful, Yes, the elevated 1-25D levels do cause low bone mass. I was speaking with my MP Dr. this week and they said that my Osteopenia will resolve as the infections are eliminated and the D levels normalize...They actually said that taking calcium right now in the early phases of the MP for me would not be helpful, but may in fact deposit it into areas other than the bones....That's interesting, b/c I had been on calcium for many years and tolerated it just fine...I stopped it briefly when starting on Benicar and then re-started it again and find I cannot tolerate it right now...it makes me feel very drugged up and groggy....So I shall just wait till things improve...before I take calcium again. Lisa |
|||||||||
|
Joyful Board Staff
|
Thanks Lisa. That's interesting about the Calcium making you feel drugged. I think I have experienced that before, but right now it actually seems to be helping with the fatigue. But I can't say for sure because I also changed to a much lower dose of the Z+C just about the same time. Somehow it 'feels like' it was the addition of the RDA of Calcium+Magnesium. Not very scientific really. |
|||||||||
|
Joyful Board Staff
|
Monday, 23Feb09 ~ 207 days in Phase 3 ~ Cycle 19, day {8} _________________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, rarely NoIRs. No trips out. _________________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 4/4/2/2/2/6/8/6 8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 4/4/4/2/8/4/8/8 6 • lymph (stiff neck, arms numb a.m., swelling) ~ levels by day: 2/2/2/2/2/4/6/6 • all other baseline symptoms were level 3 or less • Other ‘baseline’ symptoms (From most to least noticeable) Leg cramps (like RLS); cold hands & feet; back pain with activity; hypersensitivity; dry lips; feeling spacey; light sensitivity; short periods of joint pain (fingers, knees); numbness in arms upon waking in morning; GI unrest, bloated; irritable bladder; lower legs itchy; various minor skin eruptions; tire easily from simple activities; not rested after sleeping; dizziness on standing; watery/stinging eyes after sleeping; ears hurt & feel swollen on the inside; post nasal drip; jaw clenching. Sleep {cycle day} total number hours past 24-hr period {1} 10, {2} 10, {3} 10, {4} 8, {5} 10, {6} 10, {7} 8, {8} 2. _________________________________________________________________________ Comments > Days {7} & {8} came with increasing to intolerable symptoms of hypersensitivity, muscle spasms, light sensitivity, dizziness & sleep problems, so I cut the cycle short at 8 days. Today (after taking new cycle doses of antibiotics) is much, much better. I also took 3 quercetin yesterday afternoon to help get things calmed down and I did have a more restful sleep afterward. > On day {5} I successfully used a couple halves of Benicar sublingual to resolve a unique symptom. A round spot (with zigzag edges like a medallion) showed up in the vision of my right eye. It was strobing black & white with my eye open or closed. It started out small and slowly grew larger until it was no longer in my field of vision. Another one of those ‘strange IPs’ I guess. > A recent neurological symptom is a strong need to organize/rearrange/neaten. Sometimes that can lead to being too active physically and that can lead to more fatigue _________________________________________________________________________ Something to Celebrate Two Key Papers Published in Autoimmunity Reviews |
|||||||||
|
Joyful Board Staff
|
Tuesday, 3Mar09 ~ 215 days in Phase 3 ~ Cycle 20, day {8} _________________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, rarely NoIRs. No trips out. _________________________________________________________________________ Symptoms 6 • muscle (pain, spasms, fatigue) ~ levels by day: 4/6/6/4/4/4/6/4 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 2/6/6/4/6/4/6/4 6 • lymph (stiff neck, arms numb a.m., swelling) ~ levels by day: 4/2/6/4/6/6/6/6 • all additional symptoms at level 3 or less • Additional symptoms (From most to least noticeable) Mid-back pain that increases with activity; numbness in arms upon waking in morning; tire easily from simple activities; short periods of joint pain (fingers, hips); not rested after sleeping; light sensitivity; dizziness on standing ; irritable bladder; dry lips; skin: lower legs itchy, various minor eruptions; watery/stinging eyes after sleeping; post nasal drip; swelling around upper right molar; ears hurt and feel swollen on the inside; TMJ pain. Sleep {cycle day} total number hours past 24-hr period {1} 10, {2} 10, {3} 12, {4} 11, {5} 10, {6} 9, {7} 12, {8} 9. _________________________________________________________________________ > Because last Fall I was having higher levels of neurological symptoms—I dropped the use of the Swing Machine from October to February—the motion was just too much when I was so hypersensitive. I now suspect that this may have contributed to the bone loss as the gentle motion the only activity I had that might stimulate bone formation. This is because I do not have the ‘typical’ weight bearing exercise an active person does. I have gone back to using the Swing Machine, along with a very short stretch floor routine 4-5 days a week. > This past week I added in the use of a ‘relaxation’ CD that claims to help the brain synchronize and relax using ‘harmonically layered brainwave audio technology.’ It seems to be doing something that is kind of relaxing—I think. At least the gentle sound of ocean waves is nice. > I am now taking extra hydroxyzine as needed--both to sleep longer at night and to lessen feelings of bladder irritation during the day. _________________________________________________________________________ Some things to Celebrate • Budding trees, birdsong, a friend's laughter, joy around the table! |
|||||||||
|
Joyful Board Staff
|
Friday, 13Mar09 ~ 225 days in Phase 3 ~ Cycle 21, day {10} MP Meds 40mg Beni: q4/or/6h ~ 100mg Mino q48h + very low doses of the other two main Phase 3 antibiotics _________________________________________________________________________ Palliative Meds Extra Hydroxyzine: 12mg, 1x on day: {3}{5} Extra Valium: 0.67mg, 1x on day: {3} Guaifenesin: 200mg, 3x on day: {1}thru{4} Aspirin: 325mg, 1x on day: {7} > administered by E.R. nurse _________________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, rarely NoIRs. Trips out on days {3}{6}{8}. Direct sun only to/from buildings. Bright light in dilated eyes for retina exam on day {3}. All usual coverings, precautions. _________________________________________________________________________ Symptoms 8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 4/4/6/8/6/7/8/7/7/6 6 • muscle (pain, spasms, fatigue) ~ levels by day: 4/4/4/2/2/6/2/4/6/4 6 • lymph (stiff neck, arms numb a.m., swelling) ~ levels by day: 4/4/4/2/6/6/4/6/2/2 • all additional symptoms at level 3 or less • Additional symptoms (From most to least noticeable) Nausea; numbness on right side of face; right eye droopy or more open than left; very dry skin; word salad (writing or typing wrong letters in words); mid-back pain that increases with activity; numbness in arms upon waking in morning; tire easily from simple activities; short periods of joint pain (fingers, hips); not rested after sleeping; light sensitivity; dizziness on standing; irritable bladder; dry lips; skin: lower legs itchy, various minor eruptions; watery/stinging eyes after sleeping; post nasal drip; swelling around upper right molar; ears hurt and feel swollen on the inside; TMJ muscles tight, also clenching of teeth. Sleep {cycle day} total number hours past 24-hr period {1} 8, {2} 7, {3} 8, {4} 12, {5} 8, {6} 10, {7} 10, {8} 6, {9} 11, {10} 7. _________________________________________________________________________ > About 2 weeks ago I had what I now understand was an opthalmic migraine (without headache, just tension around back of head and zigzag visuals). A week ago (day {3}) I had a retinal exam by the optometrist, with dilation & bright lights. This seems to have triggered a lot of neurological symptoms including a hemiplegic migraine. (My optometrist noted the blepharitis is still present--I'm having a ‘flare’ right now.) > The decision to get a work-up via the E.R. was made on Tuesday (day {7}) to rule out a stroke. The CT scan didn’t show anything, but they kept me overnight for ‘observation’. The next day the neurologist cleared me to go home, but did agree to order an outpatient MRI of the brain & brain stem. My doctor will have the results in the next week or so. > For my overnight stay, the hospital didn't have Benicar in their formulary and I had to give them my own pills to send to the pharmacy so they could inventory them, package them, and send them back up to the nurse to 'administer.' During my intake to the E.R., my BP was 98/64 (6pm). The next morning it was closer to my ‘usual’ numbers 84/54 (9am), 88/54 (10am), and 91/54 (11am). _________________________________________________________________________ Something to Celebrate • Huge gratitude for health insurance that will cover all my testing, doctor visits & E.R. stay! |
|||||||||
|
BARNEY Moderator 
|
Joyful, Glad that your ER visit went so well.....hoping you get a great report from your MRI. HANG IN THERE, WE WILL MAKE IT!!!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Saturday, 21Mar09 ~ 233 days in Phase 3 ~ Cycle 22, day {8} MP Meds 40mg Beni: q4h ~ 100mg Mino q48h + very low doses of the other two main Phase 3 antibiotics _________________________________________________________________________ Palliative Meds Extra Benicar: 20mg, sublingual, 1x on day: {4} _________________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, rarely NoIRs. Trips out on days {3}{4}. Direct sun only to/from buildings. All usual coverings, precautions. _________________________________________________________________________ Symptoms 4 • muscle (pain, spasms, fatigue) ~ levels by day: 4/2/4/4/4/4/4/4 6 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 6/6/6/6/6/6/6/6 6 • lymph (stiff neck, arms numb a.m., swelling) ~ levels by day: 4/4/4/2/4/6/4/6 • all additional symptoms at level 3 or less • Additional symptoms (From most to least noticeable) Numbness on right side of face; right eye droopy or more open than left; very dry skin; word salad (writing or typing wrong letters in words); mid-back pain that increases with activity; numbness in arms upon waking in morning; tire easily from simple activities; short periods of joint pain (fingers, hips); TMJ muscles tight, also clenching of teeth; not rested after sleeping; light sensitivity; watery/stinging eyes after sleeping; post nasal drip; swelling around upper right molar; irritable bladder; dry lips; dizziness on standing; skin: lower legs itchy, various minor eruptions. Sleep {cycle day} total number hours past 24-hr period {1} 9, {2} 9, {3} 9, {4} 8, {5} 9, {6} 9, {7} 10, {8} 11. _________________________________________________________________________ > In follow-up of the high TSH level in January, along with the DEXA bone scan results, I met with an endocrinologist on the 17th. After quite a long discussion of my history and what a high PTH meant (no, not a deficiency of D, a deficiency of Calcium, thank you). I pretty much made my point when their tests of my PTH levels dropped from 78 to 28 in about 2 1/2 weeks--after adding the supplemental calcium. Guess I have enough 1,25-D to properly absorb the calcium even with my measured 'deficiency' of serum 25-D after all! > Treatment note: For all of my recent doctor visits (especially the E.R.) visit, I have been bringing in a page I typed up that details all of my medications, doses, etc. Because my primary health care provider is now using electronic records, the doctors are required to review each patient's medications during each encounter. Having this sheet to hand them makes their job easier and they then have more time for the interview. They seem to really appreciate it. (I will try to post an example sometime soon.) _________________________________________________________________________ Something to Celebrate • I seem to be doing a little better this past cycle. • Thank you for all the support during the 'excitement' recently. |
|||||||||
|
BARNEY Moderator
|
Joyful, What a wonderful report, you did great at the er with all the great info you took with youl Great advice to take written records of meds to er and to our docs, I hope everyone picks up on them. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Thanks Barney. Makes me think of my old motto ... "I wasn't born organized, I got this way in self-defense!"I think that since my 25-D levels got low enough to get my immune function rolling, I'm really just learning how much I need the 'brakes' on this train. I used to 'get away' with pushing a little bit, but now the word caution has taken on a whole new level of important to me. It really helps to remember that on the MP, the "big guns" are not the antibiotics, or even the Benicar, it' our own body's immune system. Once that is working, look out! |
|||||||||
|
BARNEY Moderator
|
Amen to that, Joyful. HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Tuesday, 31Mar09 ~ 243 days in Phase 3 ~ Cycle 23, day {10} MP Meds 40mg Beni: q4h ~ 100mg Mino q48h + very low doses of other Phase 2 antibiotic _________________________________________________________________________ Palliative Meds Extra Benicar: 20mg, sublingual, 1x on day: {4}{9} Extra Valium: 0.67mg, 1-2x on day: {5}{7}{9} Extra Hydroxyzine: 12mg, 1x on day: {8}{9} Coldeeze Zinc Loz: 1 tablet, disolved in mouth, 2-4x on day: {2}{3}{10} Freq Mino: 50mg, q12h on day: {4} thru {10} _________________________________________________________________________ Light Exposure Staying @ home; Most of the time in low to medium lux, rarely NoIRs. Trips out on days {4}{9}. Direct sun only to/from buildings. All usual coverings, precautions. _________________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 4/6/6/6/6/6/4/6/6/8 8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 6/6/6/8/6/6/6/6/6/6 8 • lymph (stiff neck, arms numb a.m., swelling) ~ levels by day: 6/4/8/8/8/8/6/4/6/6 • all additional symptoms at level 3 or less • Additional symptoms (From most to least noticeable) Numbness on right side of face; right eye more open than left; very sore throat; right ear swelling/pain; very dry skin; word salad (writing or typing wrong letters in words); mid-back pain that increases with activity; muscle cramps/spasms; numbness in arms upon waking in morning; tire easily from simple activities; TMJ muscles tight, also clenching of teeth; flu-like achyness; trouble getting to sleep; not rested after sleeping; strong need for order; light sensitivity; watery/stinging eyes after sleeping; post nasal drip; swelling around upper right molar; dry lips; dizziness on standing; skin: lower legs itchy, increase in minor eruptions; irritable bladder; short periods of joint pain (fingers, hips). Sleep {cycle day} total number hours past 24-hr period {1} 9, {2} 10, {3} 11, {4} 4, {5} 12, {6} 7, {7} 8, {8} 12, {9} 12, {10} 12. _________________________________________________________________________ > Tried 9mg of 3rd antibiotic on days {1} and {3}. Things started to go intolerable & I had a special event planned for day {7}, so I began frequent Minocycline in the later part of day {4} to see if I could get some relief. It kinda/sorta helped. I think I’m going to drop that antibiotic completely for a couple of cycles just to try to find some relief from the neurological symptoms. > I discussed with my doctor the difference between Bell’s Palsy and a hemiplegic migraine. He made it quite simple to discern. “It’s the eyebrows,” he stated. If the eyebrows move it’s a migraine—a malfunction in the brain itself. If the eyebrows don’t move, it’s Bell’s Palsy—a malfunction of the nerve bundle outside the brain that controls facial movement. My eyebrows move, so I guess I get to keep the migraine label for a little while longer. > Following the special event on day {7} there have been three days of complete ‘down.’ I guess it’s time to expect things to start looking up pretty soon. _________________________________________________________________________ Some things to Celebrate • Life. Breath. Wonder. |
|||||||||
|
Joyful Board Staff
|
Friday, 10Apr09 ~ 22nd Month on MP ~ Cycle 24, day {10} MP Meds 40mg Beni: q4h ~ 100mg Mino q48h + very low dose of other Phase 2 antibiotic _________________________________________________________________________ Palliative Meds Extra Benicar: 20mg, sublingual, 1 on days: {2}{6}{8} Valium: 0.67mg @ bedtime; plus 1-2 on days: {2}{7}{9} Hydroxyzine: 12mg @ bedtime; plus 1-2 on days: {2}{9} Coldeeze Loz: 1-2 on days: {1}{4}{6}{7} for sore throat _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors rarely. Trips out on days {2}{6}{8}. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 6/6/6/8/8/6/6/4/4/8 8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 4/6/8/6/6/6/6/8/8/6 6 • lymph (stiff neck, arms numb a.m., swelling) ~ levels by day: 6/4/6/6/6/4/2/2/6/6 • all additional symptoms at level 3 or less • Additional symptoms (From most to least noticeable) Numbness on lower right side of face; light sensitivity; painful muscle cramps and/or spasms; mid-back pain that increases with activity; dizziness after change in elevation; numbness in arms upon waking in morning; very cold feet/hands; feel best if feet are up almost all the time; tire easily from simple activities; word salad (writing or typing wrong letters in words); swelling around upper right molar; dry lips; right eye more open than left; sore throat; right ear swelling/pain; dry skin; TMJ muscles tight; trouble getting to sleep; not rested after sleeping; blurry vision that comes and goes; visual migraines; minor nausea, lowered appetite; desire for things to be in order; crusty eyes after sleeping; post nasal drip; skin: itchy, especially above ankles, increase in minor eruptions; short periods of joint pain (fingers, knees, hips). Sleep {cycle day} total number hours past 24-hr period {1} 12, {2} 11, {3} 10, {4} 9, {5} 12, {6} 6, {7} 10, {8} 5, {9} 15, {10} 11. _________________________________________________________________________ > After discovering that my lowered ability for food prep has left me short of the RDA for calcium & some other minerals, I have added supplementation (calcium, magnesium, selenium, zinc) until I am able to get around enough again to prepare/consume sufficient amounts in my diet. > I am still trying to find some relief from the higher level of neurological symptoms that I've been experiencing. Stopping just one antibiotic doesn't seemed to be enough. I'll try going to just Minocycline for a while to see if the symptoms ease up. I would like to get to the place where I can lower the Benicar to q6h while staying well within the tolerable range for symptoms. > All three outings were unavoidable, but it took a lot out of me each time. _________________________________________________________________________ Some things to Celebrate • People who help me when I need it. • Rest in the journey. • The hope of resurrection. |
|||||||||
|
marion villa Member in Phase 3 
|
Go, go, go!!! marion |
|||||||||
|
Joyful Board Staff
|
Thanks Marion. It is so nice to have friends cheering a person on. |
|||||||||
|
Joyful Board Staff
|
Monday, 20Apr09 ~ 22nd Month on MP ~ cycle 24, day {20} _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors rarely. Trips out on days {13}{16}{17}, unavoidable. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 8/6/4/6/4/6/2/6/4/4 8 • neuro (hypersensitivity, cognitive, insomnia) ~ levels by day: 8/8/6/6/4/6/4/6/6/6 6 • lymph (stiff neck, arms numb a.m., swelling) ~ levels by day: 6/6/6/4/4/6/4/6/6/4 Additional symptoms (From most to least noticeable) Numbness on lower right side of face; light sensitivity; painful muscle cramps and/or spasms; mid-back pain that increases with activity; dizziness after change in elevation, also 'heart-beat in ears' sensations; numbness in arms during sleep; very cold feet/hands; temperature dysregulation; feel best if feet are up almost all the time; tire easily from simple activities; word salad (writing or typing wrong letters in words); more frequent periods of joint pain (fingers, knees, hips); dry lips; right eye more open than left; right ear swelling/pain; TMJ muscles tight, jaw tires quickly when chewing; trouble getting to sleep; not rested after sleeping; crusty eyes after sleeping; post nasal drip; blurry vision that comes and goes; visual migraines; desire for things to be in order; minor nausea, lowered appetite; skin: itchy, especially above ankles, increase in minor eruptions. Horizontal Time {cycle day} total hours per day {11} 10, {12} 14, {13} 16, {14} 15, {15} 17, {16} 13, {17} 15, {18} 17, {19} 16, {20} 12. _________________________________________________________________________ > The current high level of palliative medications has allowed me to try lowering the Benicar to q6h the last three days of this reporting period. > I'm starting to feel like the extra "horizontal time" combined with the frequent mino and other palliation is helping me to recover back to more tolerable levels of symptoms. _________________________________________________________________________ Some things to Celebrate • Love • Joy • Peace |
|||||||||
|
BARNEY Moderator
|
Joyful, Glad you are getting more tolerable IPs. I have also had sleep problems, last week I slept for 36hrs....got up for 4hr...then slept for 12 more hours...just could not hold my eyes open and now I am back to your kind of sleep....little sleep but also not rested. Guess, we have to go thru all the sleeping IPs. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Thank you Barney. I was tracking hours slept before. But now I'm trying to record hours with my feet up (i.e., laying down) because I'm being more attentive to that. Especially with the new information about weakness in the left ventricle of the heart. I figure it is good to make sure all of the tissues are getting the improved circulation that comes from getting my feet up. I'm trying to 'adjust' to my new lowered level of activity. I am feeling frustrated today because of how little I can 'get done' right now. Oh well! |
|||||||||
|
BARNEY Moderator
|
Joy, You know I think that one IP that is never talked about on the MP site, is PATIENCE. We are so anxious to get well, that patience is hard to come by. Laying around resting is not how we pictured our lives. But we will be okay and do what we need. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Thursday, 30Apr09 ~ 22nd Month on MP ~ cycle 24, day {30} _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors rarely. Trip out on day {29}. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: 4/4/4/4/6/6/4/8/8/6 6 • neuro (hypersensitivity, cognitive) ~ levels by day: 4/4/4/6/6/6/6/4/6/6 6 • lymph (stiff neck, swelling, etc.) ~ levels by day: 4/4/4/6/6/4/4/4/4/4 Additional symptoms (From most to least noticeable) Physically tire easily from even simple activities; feel best if feet are up all the time; timing of sleep cycles off; not rested after sleeping; muscle cramps, spasms, or tremors; dizziness after change in elevation; hypersensitivity to light, sound, smells, heat, or motion; muscles tight, especially neck, face, shoulders; mid-back pain that increases with even minimal activity; mentally tire quickly; very cold feet/hands; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; blurry vision that comes and goes ; intermittant joint pain (fingers, toes, knees, or hips); heart pounding in ears with or without activity; temperature dysregulation; dry and/or peeling lips; numbness on lower right side of face; right eye seems more blurry than left (visual migraine?); word salad (writing or typing wrong letters in words); swelling around upper right molar; post nasal drip; crusty and/or irritated eyes after sleeping; shortness of breath; numbness in arms upon waking from sleep; minor nausea, lowered appetite; desire for things to be in order. Time w/ feet up ~ total hours by day: / 20 / 20/ 20 / 20 / 20 / 22 / 23 / 23 / 22 / 22 / _________________________________________________________________________ > Lowering the Benicar to q6h turned out to be a bad idea. The symptoms levels were far too high, especially with what is apparently some heart involvement in the IP/herx. So, I'm following the wisdom in the MP guidelines and returning to Benicar q4h until these symptoms are no longer evident. Also early in this period I was so tired I slept through my alarms and went over 8 hours between doses. This must have added to my higher symptom levels too > Now that I am either in bed, or sitting where I can have my feet up all of the time, it seems like the migraine symptom levels are starting to back down slightly. It probably helps that my home is very quiet and very low lux, and that I only had one very short trip out this week. > The dosing of the Minocycline varied from every 24 hours to one 48 hour period (skipped day 5), to every 12 hours (starting on day 6). It seems like the Minocycline is not actually providing the anti-inflammatory effect as strongly as it has in the past. _________________________________________________________________________ Plan: Continue with only Benicar plus Minocycline for a little while longer. _________________________________________________________________________ Some things to Celebrate • Enduring hope • A loving family • The truth prevailing |
|||||||||
|
Joyful Board Staff
|
Sunday, 10May09 ~ 23rd Month on MP ~ cycle 24, day {40} Light Exposure Staying @ home with mostly very low lux; NoIRs indoors rarely. Trip out on day {32}{34}{36}. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Symptoms 8 • muscle (pain, spasms, fatigue) ~ levels by day: / 6 / 4 / 2 / 4 / 6 / 6 / 8 / 8 / 8 / 8 / 10 • neuro (hypersensitivity, cognitive) ~ levels by day: / 6 / 4 / 6 / 6 / 6 / 8 / 10/ 10/ 10/ 10/ 8 • lymph (stiff neck, swelling, etc.) ~ levels by day: / 6 / 4 / 4 / 4 / 4 / 6 / 4 / 8 / 8 / 8 / Additional symptoms (From most to least noticeable) Physically tire easily from even simple activities; feel distressed when feet are not kept elevated; mid-back pain that increases with even minimal activity; heart pounding in ears with or without activity; muscles tight, especially neck, face, shoulders; not rested after sleeping; mentally tire quickly; temperature dysregulation; word salad (writing or typing wrong letters in words); dizziness after change in elevation; muscle cramps, spasms, or tremors; hypersensitivity to light, sound, smells, heat, or motion; GI upset, minor nausea, or lowered appetite; intermittent joint pain (fingers, toes, knees, or hips); skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; timing of sleep cycles off; numbness in arms upon waking from sleep; dry and/or peeling lips; blurry vision that comes and goes; shortness of breath; migraine: visual, numbness, tightness at back of head; emotional fragility; very cold feet/hands; post nasal drip; crusty and/or irritated eyes after sleeping; desire for things to be in order. Time w/ feet up ~ total hours by day: / 23 / 20 / 22 / 20 / 23 / 22 / 24 / 24 / 24 / 23 / _________________________________________________________________________ > Started this 10 day period with Minocycline dosing of q12h. On the forth day I only took the first (4am) dose and then did not take the second as part of the plan to return to q48h dosing. However, I had a major GI upset late Wednesday night (day 6) and so did not take any more Minocycline until I resumed the q12h dosing today (day 10). > My symptom levels have been pretty high since late Wednesday night. I can’t sort out if it was a stomach flu, a bad food reaction, a migraine triggered by fluorescent lights at a local store I briefly shopped at late in the evening, or a very unusual IP/herx flare. All I know is that I ache all over and have stayed in bed just about all the time since then. > I stopped taking everything ‘extra’ since the GI upset. I did not stop the hydroxyzine and valium because I simply don’t go to sleep or stay asleep without them. _________________________________________________________________________ Some things to Celebrate • Ice cream in the freezer • Power bill paid up so the ice cream stays cold |
|||||||||
|
BARNEY Moderator
|
Hello Joyful, Is your Benicar 40mg/4hrs and 20mg sublingual? HANG IN THERE, WE WILL MAKE IT!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Hi Barney! Yes, it's Benicar q4h (every 4 hours), plus between 10mg to 20mg sublingual when I've really got to do more than just lay in bed waiting to feel better. I guess I'd better follow the guidelines if I'm going to try to give support to others in the same kettle! After the dust settles a little more I hope to experiment around with the Minocycline to try to see more clearly where my immune system status really is at. Any words of wisdom from someone with as much experience as you is very, very welcome! |
|||||||||
|
BARNEY Moderator
|
Joyful, Sometimes things will come to me when I read....so I am going to reread your last few posts and see if anything comes to mind that might help you. In the meantime...enjoy that bed break you are getting...if we come up with an answer, it may be the last rest you get. LOL HANG IN THERE, WE WILL MAKE IT!!BARNEY |
|||||||||
|
Limburg Member in Phase 2 
|
Hi Joyful ! I don't have as much experience as many here, especially Barney, but Im glad your ice cream stays cold Hope you'll soon enjoy it!I wish you all the strength you need, Annemarie |
|||||||||
|
BARNEY Moderator
|
Joyful, I chuckled when I read your Things to Celebrate Ice Cream Paid electric bill to keep ice cream cold You are thinking on the same wave as me. I buy Breyers Low Carb (no eggs). Can't live w/o it. lol HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Hi Barney & Annemarie. Glad we are on common ground when it comes to the finer things in life! Barney: As for looking over my history, you may want to look at my phase 3 thread too. I'm going to try to type a quick summary here as well... All 25D Test Results: Test #1 04Jun07 25D= 32 ng/mL {Pre-MP, D supplemented} Test #2 06Aug07 25D= 26 ng/mL {1 month on MP} Test #3 05Oct07 25D= 39 ng/mL {3 months on MP} Test #4 05Dec07 25D= 27 ng/mL {5 months on MP} Test #5 05Feb08 25D= 29 ng/mL {7 months on MP} Test #6 05Apr08 25D= 18 ng/mL {9 months on MP} Test #7 12Jul08 25D= 17 ng/mL {11 months on MP} Test #8 24Oct08 25D= 15 ng/mL (16 months on MP) Test #9 07Jan09 25D= 11 ng/mL (18 months on MP) Test #10 05Apr09 25D= 9 ng/mL (21 months on MP) MP history: Phase 1 – M only, 2.5 months from July07-Sep07 [25D very high] ModPh1 – De+C, 2.5 months from Sep07-Nov07 [25D very high] ModPh2 – M+C, 2 months from Dec07-Jan08 [25D very high] Phase2 – M+Z, 2.5 months from Feb08-Apr08 [25D high] Break – Benicar only, end of Apr08 [25D coming down] Restart – M+Z, 1.5 months from Jun08-Jul08 [25D same] Phase 3 - Z+M+C, extremely low doses Aug08-now [25D dropping] Since the 25D has come into the optimal theraputic range (below 12) around the start of the year, my symptoms during IP have strongly increased. I have always suspected neuro and cardio involvement. Now that the IP/herx has brought those symptoms above the 'subclinical' levels that only I seemed to detect, they now have actually shown up on tests (MRI showing lesions, ECG showing abnormalities, Cardio showing low stroke and volume output). These kinds of IP are actually a welcome thing to me because I really want to reverse this disease process now... before it gets worse. I'm willing to go back to the begining in a way by returning to 'phase 1' at this point. I don't feel this incredible need to push my body beyond it's ability to flush out the debris left from all of this 'trench warfare' at the cellular level. Thanks again. |
|||||||||
|
BARNEY Moderator
|
Joyful wrote: Hi Barney & Annemarie. These kinds of IP are actually a welcome thing to me because I really want to reverse this disease process now... before it gets worse. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Thank you Barney for your helpful thoughts on my current state... I know you have the experience and knowledge for your responses to hold a lot of weight with me! |
|||||||||
|
Joyful Board Staff
|
Wednesday, 20May09 ~ 23rd Month on MP ~ cycle 24, day {50} MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ _________________________________________________________________________ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 on days {42}{44}{45}{46}{48}{49}{50} Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {49}{50} Valium: 0.67mg @ bedtime {daily}, plus extra on days {41}{42}{43}{46}{49} Advil: 200mg, 2-4 {48}{49}{50} for pain after root canal treatment Arnicare Gel: small dabs, on days {41}{43}{44}{46}{48}{49} for migraine symptoms _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors rarely. Trip out on day {48}{50}. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 •muscle (pain, spasms, weakness) ~ / 6 / 4 / 6 / 8 / 4 / 8 / 8 / 6 / 4 / 4 / 8 •neuro (hypersensitivity, cognitive)~ / 6 / 4 / 6 / 8 / 6 / 8 / 6 / 8 / 6 / 6 / 6 •lymph (stiff neck, swelling, etc.) ~ / 6 / 4 / 6 / 6 / 4 / 6 / 4 / 4 / 4 / 4 / Additional symptoms (From most to least noticeable) Not rested after sleeping; timing of sleep cycles off; temperature dysregulation (sweats, chills); physically tire easily from even simple activities; word salad (writing or typing wrong letters in words); blurry vision that comes and goes; hypersensitivity to light, sound, smells, heat, or motion; dizziness after change in elevation; muscle cramps, spasms, or tremors; feel distressed when feet are not kept elevated; very cold feet/hands; muscles tight, especially neck, face, shoulders; mid-back pain that increases with even minimal activity; mentally tire quickly; numbness in arms upon waking from sleep; heart pounding in ears with or without activity; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; emotional fragility; migraine: visual, numbness, tightness at back of head; dry and/or peeling lips; desire for things to be in order; crusty and/or irritated eyes after sleeping; intermittent joint pain (fingers, toes, knees, or hips); GI upset, minor nausea, or lowered appetite; post nasal drip. Total hours rest by day: Time asleep ~ / 11 / 14 / 0 / 8 / 12 / 12 / 7 / 9 / 16 / 9 / Time in bed ~ / 24 / 22 / 14 / 10 / 18 / 17 / 21 / 21 / 17 / 16 / Time w/ feet up ~ / 24 / 22 / 20 / 22 / 20 / 21 / 22 / 21 / 23 / 23 / _________________________________________________________________________ > I am still feeling unusually weak and unable to tolerate much activity for the last week or so. It seems I am starting to regain some strength the last day or so. > One of the two most bothersome symptoms right now is the sensations of being very hot or very cold (body temp stays the same). This is especially annoying as it interrupts my sleep multiple times per night. The other symptom is how hard it is to sleep at night... and how hard it is to stay awake during the day. > Two days ago I went to the dentist for the second half of a root canal treatment (it had been abscessed for a very long time and was seriously interfering with the bite). In the first few hours afterward I almost fainted a couple of times. Today I seemed to be more steady. _________________________________________________________________________ Plan: Stay at q4h Benicar, continue with no antibiotics. _________________________________________________________________________ Some things to Celebrate • Surprise visit from some dear family members... lots of hugs... some tears... great joy! |
|||||||||
|
BARNEY Moderator
|
Joyful, I know you are still tired, but you have a lot more healing to do, but it sounds like you are a little better. Be extremely careful with the possible fainting....do not want you to fall and get hurt. Here's to your healing with the least herxing. HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Thanks Barney. I think the fainting effect was from when the dentist unpacked the antibiotic meds from the root canal and some of it may have got into my bloodstream from when it was in contact with the gums. Probably some kind of IP/herx reaction. It's now 5 days later and other than sleeping alot I think I'm in a much better place.... I have even read some progress reports and wrote a few responses. |
|||||||||
|
BARNEY Moderator
|
Hi Joyful, So very happy for you.....the sleep will help you heal. HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
|||||||||
|
marion villa Member in Phase 3
|
Joyful: I´m glad you are better, I myself need aroot canal treatment, the tooth doent hurt me at all, and I am scared about having this during the MP, i don´t know if there is some anesthetic without epinephrine or vasoconstrictor here. |
|||||||||
|
thelymelight Member in Phase 1
|
Hello there, Yes there are aneasthetics w/out epinephrine.... I get one called "Citanest plain" - I believe it was called...It's been a few years now since I have had any dental work done... I am in Canada, so don't know if this one is available where you are..but they are definetely available, just speak to your dentist about it.. Lisa |
|||||||||
|
Marber144 Member in Phase 2 
|
Hi Joyful, I had some dental work done last fall & asked my dentist to use an epinepharine-free anesthesia. I was told that dentists must have this type anesthesia, since it's necessary for patients with cardiac problems. The only difference I could discern was that it didn't last as long as the one with epinepharine. Your dentist should have this type anesthesia on hand. I'd call your dental office to make sure. I was fine with it, althought I think it took 2-injections. I was having involved dental work done at that time, a 3-tooth bridge. Your sleep records look like mine, lots of hours. Keeping your feet up is a great idea (for me, too!). Fatigue is so bothersome, but it's an important signal that we need to rest/sleep more - to heal. Yeah, MP! Thanks for your insights, Joyful..... |
|||||||||
|
Joyful Board Staff
|
Thank you Barney, Marion, Lisa, & Martha for your comments. The dentist (endodonist actually) used the same type of injected material as he did last month and I couldn't tell you if it made me feel any worse. I had never thought to worry about the ingredients of the anesthetic. I'm always worried about the bright lights in the eyes that usually knock me for a loop. Somebody please (gently) tap me up side the head for not reviewing the <<Working with a dentist>> page before I started the work... The warning about using local anesthetics was in a nice big red box at the top of the page. I am sure glad my failure to review the knowledge base before my dental work didn't cause me any more trouble than it did. Whew! |
|||||||||
|
Joyful Board Staff
|
Saturday, 30May09 ~ 23rd Month on MP ~ cycle 24, day {60} MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ _________________________________________________________________________ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 on days {52}{53}{54}{56}{58}{59} Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {51}{53}}{54} Valium: 0.67mg @ bedtime {daily}, plus extra on days {51}{52}{53}{54} Advil: 200mg, 2-4 {56}{57} for pain after dental work Arnicare Gel: small dabs, on days {52}{54}{59} for migraine symptoms _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors rarely. Trips out on day {54}{56}{59}, unavoidable. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 •muscle (pain, spasms, weakness) ~ / 8 / 4 / 4 / 6 / 6 / 4 / 4 / 2 / 2 / 8 / 8 •neuro (hypersensitivity, cognitive)~ / 6 / 8 / 6 / 8 / 8 / 6 / 6 / 8 / 6 / 6 / 6 •lymph (stiff neck, swelling, etc.) ~ / 2 / 4 / 4 / 6 / 4 / 4 / 6 / 6 / 6 / 4 / Additional symptoms (From most to least noticeable) Not rested after sleeping; timing of sleep cycles off; mentally tire quickly; physically tire easily from even simple activities; temperature dysregulation (sweats, chills); word salad (writing or typing wrong letters in words); numbness in arms upon waking from sleep; muscles tight, especially neck, face, shoulders; dizziness after change in elevation; feel distressed when feet are not kept elevated; hypersensitivity to light, sound, smells, heat, or motion; mid-back pain that increases with even minimal activity; blurry vision that comes and goes; emotional fragility; heart pounding in ears; muscle cramps, spasms, or tremors; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; very cold feet/hands; post nasal drip; crusty and/or irritated eyes after sleeping; dry and/or peeling lips; migraine: visual, numbness, tightness at back of head; desire for things to be in order; GI upset, minor nausea, or lowered appetite; intermittent joint pain (fingers, toes, knees, or hips). Total hours rest by day: Time asleep ~ / 16 / 12 / 10 / 6 / 12 / 6 / 15 / 10 / 5 / 14 / Time in bed ~ / 20 / 19 / 10 / 6 / 14 / 20 / 22 / 23 / 22 / 22 / Time w/ feet up ~ / 22 / 22 / 22 / 18 / 24 / 20 / 22 / 23 / 23 / 23 / _________________________________________________________________________ > On day {4} I made a big stretch and went out for a daytime outing with extended family in a nearby city. I had to use extra Benicar sublingual to get through but overall I managed well during the event. The cost of losing the next two or three days to bed rest seemed to be worth it at the time. > On day {6} late in the day I went out again to complete the dental restoration for the root canal work from last week. This again seemed to set me back a bit for a day or so. It wasn't as long an outing, but it was kind of stressful with the drilling, bright lights, chemicals, etc. > After a week long absence, the minor joint pain symptoms seem to be returning. Especially in the finger joints. I am glad they are intermittent as they can keep my from doing simple tasks such as opening jars and typing at the keyboard. > I continue to have problems with almost any level of sustained activity. I can pick up a chair and move it a few feet, but if I try moving around a couple of chairs I start to feel my muscles getting weaker and weaker as I go. I tried to help make the bed this week and ended up laying on the floor to recover between each short burst of effort. I'm looking forward to this turning around... I really want to be able to do things around the house! _________________________________________________________________________ Plan: Stay at q4h Benicar, continue with no antibiotics. _________________________________________________________________________ Some things to Celebrate • Enough mental clarity to enjoy an evening of jigsaw puzzling with a friend. |
|||||||||
|
BARNEY Moderator
|
Hey Joyful, My favorite part of your post is the "Things to celebrate" especially the ice cream one. I see several places that 20mgBenicar sublingual might alleviate...ie, finger joint pain and inability to type. Sometimes cost of Benicar can come into play, wish it didn't. I love your phrase 'word salad', cause I still have a lot of that and I typed for a living....a lot of years. As to moving furniture: there are some 'pads' that can be slid in under legs (easily) and they just glide OR when hubby or friend is around, ask them to move it where you want it (that's even easier). Hope all that dental 'stuff' is done and over for you. My theory at losing a day or 2 because of an outing.....the need to have a time out of the house is worth what we pay....because the mental state kicks in to the feeling of being 'trapped' in the house. I think we all need a break from the house...even if we do pay. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Tuesday, 9Jun09 ~ 24th Month on MP ~ cycle 24, day {70} MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ _________________________________________________________________________ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 on days {61}{64}{66}{67}{69} Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {69} Valium: 0.67mg @ bedtime {daily}, plus extra on days {61}{63}{68} Advil: 200mg, x4 {61} for muscle pain Arnicare Gel: small dabs, on days {64}{68}{69} for migraine symptoms Nature-Throid: 1/2 grain, daily starting on day {67} Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors rarely. Trip out on day {66}, unavoidable. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 9 •muscle (pain, spasms, weakness) ~ / 9 / 6 / 6 / 8 / 6 / 6 / 4 / 6 / 6 / 6 / 8 •neuro (hypersensitivity, cognitive)~ / 4 / 6 / 6 / 8 / 6 / 4 / 8 / 8 / 6 / 6 / 6 •lymph (stiff neck, swelling, etc.) ~ / 6 / 2 / 4 / 4 / 4 / 2 / 4 / 6 / 4 / 2 / Detailed symptoms (From highest to lowest average symptom level) Muscles tight, especially neck, face, shoulders; timing of sleep cycles off; not rested after sleeping; mentally tire quickly; physically tire easily from even simple activities; mid-back pain that increases with even minimal activity; heart pounding in ears; feel distressed when feet are not kept elevated; numbness in arms upon waking from sleep; word salad (writing or typing wrong letters in words); skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; hypersensitivity to light, sound, smells, heat, or motion; dizziness after change in elevation; temperature dysregulation (sweats, chills); dry and/or peeling lips; muscle cramps, spasms, or tremors; post nasal drip; desire for things to be in order; blurry vision that comes and goes; crusty and/or irritated eyes after sleeping; very cold feet/hands; migraine: visual, numbness, tightness at back of head; intermittent joint pain (fingers, toes, knees, or hips); GI upset, minor nausea, or lowered appetite; emotional fragility. Total hours rest by day: Time asleep ~ / 12 / 9 / 9 / 12 / 9 / 3 / 14 / 11 / 13 / 12 / Time in bed ~ / 18 / 17 / 12 / 17 / 22 / 8 / 21 / 20 / 20 / 20 / Time w/ feet up ~ / 19 / 20 / 21 / 22 / 23 / 19 / 22 / 23 / 22 / 23 / _________________________________________________________________________ • Trip during daylight to doctor's office on day {6}. This is my third appointment with this doctor and we still had a lot of topics to cover ... the appointment went over an hour. The first time I came in he reviewed my full medical history. The second appointment we covered the cardiac test results and plan. This appointment is the first time we really reviewed my progress on the MP treatment. This review included significant lab results during the past two years as well. I asked if some of my less tolerable symptoms could be helped with a small amount of thyroid support for a while. He felt this was worth a try and prescribed the equivalent of armour thyroid (called nature-throid). It doesn't cost much and if it helps until I am a little further along in my healing, I will be content. (Before the appointment, I reviewed the usual FAQs on this topic.) • On day {7} I tried to do a couple of things before a friend came by to visit and I ended up sitting on the floor more than once because my vision was going grey and I felt too weak to stand. Because of my history, I suspected it was low blood volume and wasn't anxious about it. But it was keeping me from my little tasks and that frustrated me. The good thing was there was someone there to help me out by mixing up a good hydrating drink. After a couple of hours I was was doing much better. I am having a very hard time keeping hydrated. Even with adequate water and a good amount of salt in my diet. Also, I think I am getting in my diet a reasonable amount of potassium (not too much for the sake of kidney function), and that is supposed to help with blood volume too. I am recognizing this as a symptom of the disease and I look forward to the day when this is no longer a problem. • This week I reviewed my dietary intake of calcium again and decided to go back to supplementing to bring up my total intake to the RDA. I had suspected that adding the calcium increased my IP/herx levels (especially neurological) somewhat and so I was watching to see my response. On a couple of days I took twice the amount of minerals noted above and did, in fact, observe an increase in neurological symptoms that appeared to follow the extra doses. I then dropped back to a single dose per day and the next day symptoms also dropped. This seems to be a good reason not to take any more than needed. • Still in bed a lot of hours per day. But I feel less distressed sitting at the office computer with my feet up than before. However, when I do type for very long my neck and back begin to hurt so I don't sit for any longer than it takes to complete whatever task I am trying to do. It used to feel restful to sit here in this chair ... back then I could relax and enjoy working at the computer. Not any more. • I've got interesting lines of red dots along the inside of the upper right arm, and the front of both thighs (with a couple sprinkles on my torso too). When they are pushed, they appear to have lumps under the upper redness at the skin level. After a few days they almost seem to develop a "head", but but nothing comes out. I would think bug bites, but I don't have bed bugs! Just another evidence that my immune system is at work. _________________________________________________________________________ Plan: Stay at q4h Benicar, continue with no antibiotics. _________________________________________________________________________ Some things to Celebrate • Some one who cares about me ... and for me when I can't. |
|||||||||
|
thelymelight Member in Phase 1
|
Hello Joyful, Sorry to hear you are still having a rough time right now... I do hope things ease up for you real soon! We do care about you here at the MP site... About the red dots on your body....I get these and use to get them when I was on the Salt & Vit C protocol, which actually was effective against nematodes and people would visualize worms coming out.. For me my skin will itch in a certain area...can be anywhere, my arm, leg..then I will scratch it, then a red dot appears, with a bit of blood, then you can see it is actually a tiny exit hole...This also happened when I was on the salt & vit c protocol, (a very common occurence for people on that protocol) and I too actually saw a tiny white worm on my finger nail after scratching the hole.. I have some of these holes right now and new ones appear every few days..so something good is happening... Hang in there Joyful, you are in my thoughts! Lisa |
|||||||||
|
BARNEY Moderator
|
Joyful, I went to the drug interaction site and this is what it said w/the 7 xtra things you take besides Benicar (which I also included), it did not recognize arnicar gel, so it is 6. Here is the answer it gave me...so FYI: Interactions Moderate Interaction ACE INHIBITORS; ARB'S/SELECTED NSAIDS Benicar Oral and Advil Oral may interact based on the potential interaction between ACE INHIBITORS; ARB'S and SELECTED NSAIDS. THYROID PREPARATIONS/ALUMINUM-MAGNESIUM CMPDS;SIMETHICONE Nature-Throid Oral and Magnesium Amino Acid Chelate Oral may interact based on the potential interaction between THYROID PREPARATIONS and ALUMINUM-MAGNESIUM CMPDS;SIMETHICONE. ACE Inhibitors; Angiotensin II Receptor Antagonists (ARB's)/Selected NSAIDs This information is generalized and not intended as specific medical advice. Consult your healthcare professional before taking or discontinuing any drug or commencing any course of treatment. MONOGRAPH TITLE: ACE Inhibitors; Angiotensin II Receptor Antagonists (ARB's)/Selected NSAIDs SEVERITY LEVEL: 3-Moderate Interaction: Assess the risk to the patient and take action as needed. MECHANISM OF ACTION: The exact mechanism is unknown. It is believed to be related to inhibition of prostaglandin synthesis by the NSAID's. Use of an NSAID in combination with an ACE inhibitor or ARB, whose hypotensive effects may be related to the increase in hypotensive prostaglandins, may negate any decrease in blood pressure. CLINICAL EFFECTS: Concurrent use of ACE inhibitors or ARB's and NSAIDs may result in decreased antihypertensive effects. In patients with existing renal impairment, the use of these agents together may also result in further deterioration of renal clearance caused by renal hypoperfusion. PREDISPOSING FACTORS: None determined. PATIENT MANAGEMENT: Patients maintained on ACE inhibitors or ARB's should be monitored for a loss of blood pressure control and a change in renal function if an NSAID is added to their regimen. Patients receiving concurrent therapy may require higher doses of ACE inhibitors or ARB's. If blood pressure control cannot be achieved or if the patient's renal function deteriorates, the NSAID may need to be discontinued. Patients should be monitored for hypotension if NSAIDs are withdrawn from concurrent ACE inhibitor or ARB therapy. I left all the information it gave (above) so that you could read it. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Wow, Lisa and Barney thanks! Lisa, your description seems similar to my experience in many ways. As Dr. Blaney has been know to say, "Interesting!" Barney, thank you so much for looking into the interactions for me. I am using the usual way to separate the NT dose (first thing in the morning on an empty stomach) from the Mg intake by a couple hours. The Advil warning is that it can keep the ARB from lowering your blood pressure, and I don't really like to take any more than I need, so I don't think that will be a worry. But it is all good to know! The best news is that in less than five days on the NT the sweats/chills are completely gone at the moment. I am grateful that I can get deeper sleep with this symptom palliated. The Arnicare gel is a homeopathic gel used for minor pain relief. Dr. Marshall has in the past considered homeopathy to only have a placebo effect. But recent research has shown that the "placebo effect" has a true physical effect on the opioid receptors, so go figure. Last edited on Thu Jun 11th, 2009 09:28 by Joyful |
|||||||||
|
thelymelight Member in Phase 1
|
I don't believe Homeopathic remedies have just a placebo affect, as they use them in veternarian medicine and animals respond quite favouralbly to them...try the Bach Rescue Remedy on a nervous cat and watch them settle down quite quickly |
|||||||||
|
Joyful Board Staff
|
Hi again Lisa. As the guidelines for using this study site state that we don't use the forums to promote alternative treatments to the MP. I only mentioned Dr. Marshall's position as I recall it to be. I will not promote other remedies. In fact, the Homeopathy page in the MP knowledge base states that it is contraindicated as part of the MP due to the unknown effects on the VDR. (Note the study I referenced indicated an action on the opioid receptors.) However, as with most of the "more benign" palliatives, if they bring relief from intolerable symptoms, and the usual methods of adjusting the MP medications has not yet brought relief, some members will choose to use these types of palliatives in the short term. This is the case with my use of the Arnicare gel. The small dabs for the symptoms of the onset of a migraine are tried after I am already at q4h of Benicar with sublingual as often as I remember to try it. If it stops the migraine before it hits the stage of 'numb brain' then I am very grateful. While at the same time, I am always looking for when I can manage without using it so as to not interfere with the aims of the MP restoring my innate immunity. I understand what you are saying, but I think it's important for me to explain why I wrote what I wrote. I hope that makes sense. |
|||||||||
|
Joyful Board Staff
|
Friday, 19Jun09 ~ 24th Month on MP ~ cycle 24, day {80} MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ _________________________________________________________________________ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 on days {72}{73}{77}{78}{79}{80} Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {78} Valium: 0.67mg @ bedtime {daily}, plus extra on days {71}{72}{74}{76}{77}{78}{79}{80} Arnicare Gel: small dabs, on days {72}{74}{77}{78} for migraine symptoms Nature-Throid: 1/2 grain, daily Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors rarely. No trips away from home. No daylight exposure. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 •muscle (pain, spasms, weakness) ~ / 4 / 6 / 4 / 6 / 6 / 6 / 8 / 8 / 6 / 6 / 8 •neuro (hypersensitivity, cognitive)~ / 4 / 6 / 6 / 6 / 6 / 6 / 8 / 8 / 6 / 6 / 6 •lymph (stiff neck, swelling, etc.) ~ / 4 / 4 / 4 / 4 / 4 / 4 / 6 / 6 / 4 / 2 / Detailed symptoms (From highest to lowest average symptom level) Not rested after sleeping; mentally tire quickly; physically tire easily from even simple activities; hypersensitivity to light, sound, smells, heat, or motion; timing of sleep cycles off; heart pounding in ears; mid-back pain that increases with even minimal activity; intermittent numbness or tingling in extremities; muscles tight, especially neck, face, shoulders; feel distressed when feet are not kept elevated; dry and/or peeling lips; dizziness after change in elevation; word salad (writing or typing wrong letters in words); skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; blurry vision that comes and goes; post nasal drip; GI upset, minor nausea, or lowered appetite; crusty and/or irritated eyes after sleeping; desire for things to be in order; migraine: visual, numbness, tightness at back of head; muscle cramps, spasms, or tremors; emotional fragility; very cold feet/hands; intermittent joint pain (fingers, toes, knees, or hips); temperature dysregulation (sweats, chills). Total hours rest by day: Time asleep ~ / 8 / 7 / 14 / 5 / 8 / 12 / 13 / 5 / 10 / 0 / Time in bed ~ / 16 / 23 / 22 / 24 / 22 / 21 / 23 / 19 / 19 / 18 / Time w/ feet up ~ / 20 / 23 / 23 / 24 / 22 / 23 / 23 / 22 / 21 / 20 / _________________________________________________________________________ • Within a few days of starting the thyroid support the sweats/chills tapered off. I have had only one mild sense of flushing in the past few days. • Still having to stay off my feet and limit my time using the computer (light sensitivity is up again). I have been trying to do some simple stretching while laying on my back on the floor every other day again. More muscle pain in the form of ‘pay-back’ after trying to increase activity beyond bedrest and a trip or two to the kitchen. • More forgetfulness and other symptoms that cause me to suspect my IP is still going strong with just Benicar. • Music, when I remember to play it, seems to improve mood and some mobility. _________________________________________________________________________ Plan: stay the course at q4h Benicar, continue with no antibiotics. _________________________________________________________________________ Some things to Celebrate • My father loves me and makes sure I know it! • Amy & Dr. Marshall's successful trip to China. |
|||||||||
|
Joyful Board Staff
|
Monday, 29Jun09 ~ 24th Month on MP ~ cycle 24, day {90} MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ _________________________________________________________________________ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 on days {83}{84}{85}{88}{89}{90} Hydroxyzine: 12mg @ bedtime {daily} Valium: 0.67mg @ bedtime {daily}, plus extra on days {81}{85}{88} Nature-Throid: 1/2 grain, daily Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors rarely. Trip out on day {83}{84}{85}, unavoidable. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 •muscle (pain, spasms, weakness) ~ / 8 / 8 / 6 / 6 / 8 / 4 / 6 / 6 / 8 / 8 / 8 •neuro (hypersensitivity, cognitive)~ / 8 / 8 / 6 / 6 / 8 / 4 / 6 / 6 / 8 / 8 / 6 •lymph (stiff neck, swelling, etc.) ~ / 4 / 4 / 6 / 2 / 4 / 2 / 4 / 4 / 4 / 4 / Detailed symptoms (From highest to lowest average symptom level) Physically tire easily from even simple activities; feel distressed when feet are not kept elevated; mid-back pain that increases with even minimal activity; timing of sleep cycles off; not rested after sleeping; numbness or tingling in extremities; mentally tire quickly; hypersensitivity to light, sound, smells, heat, or motion; muscles tight, especially neck, face, shoulders; heart pounding in ears with activity; dizziness after change in elevation; word salad (writing or typing wrong letters in words); migraine: visual, numbness, tightness at back of head; blurry vision that comes and goes; muscle cramps, spasms, or tremors; GI upset, minor nausea, or lowered appetite; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; intermittent joint pain (fingers, toes, knees, or hips); post nasal drip; crusty and/or irritated eyes after sleeping; dry and/or peeling lips; desire for things to be in order; emotional fragility; cold feet/hands; temperature dysregulation (sweats, chills). Total hours rest by day: Time asleep ~ / 18 / 11 / 9 / 8 / 9 / 11 / 11 / 0 / 14 / 7 / Time in bed ~ / 22 / 16 / 15 / 18 / 20 / 22 / 23 / 23 / 23 / 20 / Time w/ feet up ~ / 20 / 23 / 21 / 22 / 22 / 22 / 23 / 23 / 23 / 23 / _________________________________________________________________________ • Started using my little TENS massage unit every third day or so. It seems to really help with the migraine symptoms. However, as I am out of bed a little bit and tried washing dishes for a few minutes at a time, my middle back has been more painful. I continue to try some simple stretching while laying on my back on the floor every other day. More overall muscle ache seems to be related to this. • Last couple days of cycle the lymph nodes under my jaw on either side have hurt and seem a little more swollen than usual. Right ear hurts a little too. Nothing major though. • Had my teeth cleaned and my bite adjusted on day {4}. Went to chiropractor for spine and jaw adjustments the next day. The jaw muscles were not binding and my bite was straight. I did not need a jaw adjustment. • New, higher levels of joint pain in knees, fingers. Tylenol does not help it. Sleeping seems to be the best approach. _________________________________________________________________________ Plan: stay the course at q4h Benicar, continue with no antibiotics. _________________________________________________________________________ Some things to Celebrate • Freedom. Life. Food. Clean cotton sheets. Running water. Indoor toilets. Wireless internet. |
|||||||||
|
BARNEY Moderator
|
Good report Joyful, keep up the good work. Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!! HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Thursday, 9Jul09 ~ 25th Month on MP ~ 7th ten day cycle on Benicar only MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ _________________________________________________________________________ Palliative Meds Extra Benicar: 20mg, sublingual, 1-4 on days {4}{5}{6}{7}{8}{9}{10} Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {1}{2}{3}{4}{9} Valium: 0.67mg @ bedtime {daily}, plus extra on days {2}{3}{5}{7} Nature-Throid: 1/4 grain, daily Arnicare Gel: small dabs, on days {5}{6}{7}{8}{9} for migraine symptoms Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors when on computer. Trips out on days {5}{8}, unavoidable. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 •muscle (pain, spasms, weakness) ~ / 8 / 8 / 8 / 8 / 6 / 8 / 6 / 8 / 8 / 8 / 8 •neuro (hypersensitivity, cognitive)~ / 8 / 8 / 8 / 8 / 6 / 8 / 6 / 8 / 8 / 8 / 6 •lymph (stiff neck, swelling, etc.) ~ / 6 / 4 / 4 / 4 / 2 / 4 / 4 / 4 / 6 / 6 / Detailed symptoms (From highest to lowest average symptom level) Hypersensitivity to light, sound, smells, heat, or motion; mentally tire quickly; muscles tight, especially neck, face, shoulders; mid-back pain that increases with even minimal activity; not rested after sleeping; timing of sleep cycles off; numbness or tingling in extremities; physically tire easily from even simple activities; feel distressed when feet are not kept elevated; word salad (writing or typing wrong letters in words); migraine: visual, numbness, tightness at back of head; blurry vision that comes and goes; intermittent joint pain (fingers, toes, knees, or hips); post nasal drip; desire for things to be in order; rapid heart rate with activity; muscle cramps, spasms, or tremors; dizziness after change in elevation; crusty and/or irritated eyes after sleeping; dry and/or peeling lips; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; emotional fragility; GI upset, minor nausea, or lowered appetite; cold feet/hands. Total hours rest by day: Time asleep ~ average 9.3 hours (range 0-16 hours) Time in bed ~ average 19.5 hours (range 14-23 hours) Time w/ feet up ~ average 21.9 hours (range 21-23 hours) _________________________________________________________________________ • Because I started to experience unusually sweaty palms/feet/etc. I looked up hyperthyroid symptoms and decided the Nature-Throid dose was too high as this is a symptom of sympathetic nervous system dominance. (Hydroxyzine did mute this response.) I cut the N-T dose down to 1/2 tablet, so for this cycle the I took 1/4 grain daily. After making the adjustment this symptom did not return during this cycle. Since starting the N-T the sweats/chills are all gone. • I slept through my midnight alarm a couple times this past week and when I did my symptom levels were much more uncomfortable. • On July 4th we attended a gathering where I was able to spend most of my time indoors, but there still was daylight coming in the large windows on the north side of the house for about 4 hours. This seemed to trigger stronger migraine symptoms that have lasted about a week now. The symptoms included facial numbness, mentally blank feelings, muscle 'tics' on and around eyes, myalgia, rapid heart beat, and increased hypersensitivity. I am needing the NoIRs to use the computer but my vision isn't so great with them. • There was a day where I was doing well standing and so I tried to do the dishes. The back pain was pretty bad after and I ended up going to bed early to recover. Learning to pace myself is just not that easy! • Late in this cycle I had an evening of strong pain in/around my left ear. I used heat, 200mg guaifenisin, and a zinc lozenge for palliation. _________________________________________________________________________ Plan: stay the course at q4h Benicar, continue with no antibiotics. _________________________________________________________________________ Some things to Celebrate • Mini-PC laptop & a video subscription to iBethel.tv ... nice. |
|||||||||
|
Joyful Board Staff
|
Sunday, 19Jul09 ~ 25th Month on MP ~ Benicar only, cycle 8, day {10} MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ Palliative Meds Extra Benicar: 20mg, sublingual, 1-4 daily Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {1}{3}{4}{5} Valium: 0.67mg @ bedtime {daily} Nature-Throid: 1/8 grain, daily Arnicare Gel: small dabs, on days {2}{3} for migraine symptoms Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; NoIRs indoors, especially when on computer. Trip out on day {5}, unavoidable. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 •muscle (pain, spasms, weakness) ~ / 6 / 8 / 4 / 4 / 6 / 4 / 4 / 6 / 6 / 4 / 6 •neuro (hypersensitivity, cognitive)~ / 6 / 4 / 4 / 4 / 6 / 6 / 4 / 4 / 4 / 4 / 8 •lymph (stiff neck, swelling, etc.) ~ / 6 / 8 / 6 / 6 / 4 / 4 / 4 / 4 / 4 / 4 / Detailed symptoms (From highest to lowest average symptom level; increased symptoms in bold) Not rested after sleeping; muscles tight, especially neck, face, shoulders; hypersensitivity to light, sound, smells, heat, or motion; timing of sleep cycles off; numbness or tingling in extremities; mid-back pain that increases with even minimal activity; physically tire easily from even simple activities; feel distressed when feet are not kept elevated; mentally tire quickly; word salad (writing or typing wrong letters in words); muscle cramps, spasms, or tremors; dizziness after change in elevation; heart pounding in ears with activity; post nasal drip; blurry vision that comes and goes; migraine: visual, numbness, tightness at back of head; intermittent joint pain (fingers, toes, knees, or hips); desire for things to be in order; crusty and/or irritated eyes after sleeping; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; GI upset, minor nausea, or lowered appetite; dry and/or peeling lips; emotional fragility; cold feet/hands. Total hours rest by day: Time asleep ~ average 9.3 hours (range 6-12) Time in bed ~ average 17.4 hours (range 10-22) Time w/ feet up ~ average 22.7 hours (range 21-23) _________________________________________________________________________ • Due to another round of sweaty palms and feeling more hypersensitive, I again cut the N-T dose down by half, so for this cycle the I took more or less 1/8 grain daily. Apparently I needed a very small amount of thyroid support; not as much as is typical. Since starting the N-T the sweats/chills are all gone. • The lymph glands on my head and neck continue to be more tender than normal. On day {2} my neck was very stiff and painful all day long. I took 2 Advil in the morning, but it didn't seem to do much. Sleeping was the best remedy for it. • All of the migraine type symptoms (facial numbness, mentally blank feelings, muscle 'tics' around eyes/other locations, myalgia, rapid heart beat, and increased hypersensitivity) have been gradually decreasing after making the second reduction in the thyroid support (N-T). I continue to need the NoIRs when on the computer but the light sensitivity is also decreasing. • Almost every symptom level decreased by some amount this cycle. Which means that I am testing the limits of my physical abilities in doing things around the house (beyond getting to the kitchen, pouring a cup of milk and eating a protein bar). This could be good because I am less bed bound. This can be bad because I can get involved in something that really is too much for me, but I 'forget myself' and over do (like sitting on the floor and organizing the bottom 2 shelves in my office bookcase). _________________________________________________________________________ Plan: stay the course at q4h Benicar, continue with no antibiotics. _________________________________________________________________________ Some things to Celebrate • Bird songs and breezes coming in my window as I rest. |
|||||||||
|
thelymelight Member in Phase 1
|
Hi Joyful, Yes I enjoy that too, listening to the birds singing their little hearts out,with a nice lovely breeze blowing. ...That is why I am enjoying this NOT so HOT, summer we are having here in Ontario....Haven't had to put the a/c on much at all, (like most summers and be all closed up almost everyday)..We get enough of that in the winter..Lisa |
|||||||||
|
BARNEY Moderator
|
Joyful, I am so delighted to see you improving as you are. I envy you and lymelight to have a cool summer, ours is over 100 degrees most day. Right now is our horrible muggy weather. Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!! HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Wednesday, 29Jul09 ~ 25th Month on MP ~ Benicar only, cycle 9, day {10} MP Meds ~ 40mg Benicar, q4-6h ~ no Antibiotics ~ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 {1}{5}{7} Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {1}{2}{3}{9}{10} Valium: 0.67mg @ bedtime {daily} Nature-Throid: 1/8 grain, daily Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; mostly NoIRs while on computer. Trip out near sunset on day {8}. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 6 • muscle (pain, spasms, weakness) ~ / 6 / 4 / 4 / 4 / 4 / 4 / 6 / 6 / 6 / 4 / 6 • neuro (hypersensitivity, cognitive)~ / 4 / 6 / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 4 • lymph (stiff neck, swelling, etc.) ~ / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 4 / Detailed symptoms (From highest to lowest average symptom level; increased symptoms in bold) Not rested after sleeping; timing of sleep cycles off; muscles tight, especially neck, face, shoulders; numbness or tingling in extremities; intermittent joint pain (fingers, toes, knees, or hips); physically tire easily from even simple activities; feel distressed when feet are not kept elevated; mentally tire quickly; desire for things to be in order; crusty and/or irritated eyes after sleeping; hypersensitivity to light, sound, smells, heat, or motion; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; rapid heart rate with activity; mid-back pain that increases with even minimal activity; muscle cramps, spasms, or tremors; post nasal drip; blurry vision that comes and goes; word salad (writing or typing wrong letters in words); GI upset; dizziness after change in elevation; migraine: visual, numbness, tightness at back of head; cold feet/hands; emotional fragility; dry and/or peeling lips. Total hours rest by day: Time asleep ~ average 9.7 hours (range 7-12) Time in bed ~ average 19.4 hours (range 14-22) Time w/ feet up ~ average 21.0 hours (range 18-23) _________________________________________________________________________ • After feeling a little better the previous 10 days, I began to stretch out the Benicar dosing to every 6 hours on day 4. I feel more overall ache from inflammation, but it is tolerable. I am also feeling much more joint pain, GI upset, and skin irritation/itchiness now. • With no air conditioning in the house and a little bit of a heat wave, it has been consistently over eighty degrees during the day. So perhaps that has helped increase some IP, I am especially noticing the joint pain. Facial numbness comes mostly after increased light in my eyes (migraine aura). • The lymph glands on my head and neck continue to be more swollen and tender than normal. When I tilt my head down I can feel an extra chin that I didn't have before, even with almost daily use of the swing machine to help improve lymphatic circulation. • I continue to use the NoIRs when on the computer some of the time but the light sensitivity is also decreasing. Extra hydroxyzine helped with sensitivity, especially with the itchy skin. I also used it on days 1 & 2 because I was feeling like my bladder was swollen and not emptying very well. That problem resolved by day 3. • It's been quite a while since I was taking the L-Lysine. I stopped it during my stomach flu symptoms at the start of May and never added it back in. Yesterday was the first time I even felt the beginning of a canker sore in my mouth and it was gone by this morning without taking the Lysine. I am still eating the same high Arginine foods so it may be that my viral load is not as high anymore. I'm not really sure what it means, besides that I save money not having to buy the supplement any more. • Improvements: I am now able to stand for at least 5 minutes without discomfort (legs do ache later). I am now able to walk 30 feet easily most of the time. I can stand for a minute or two while showering, but still mostly sit. Changing levels only is difficult about 50% of the time, during this past 10 days. _________________________________________________________________________ Plan: stay the course on Benicar only. _________________________________________________________________________ Some things to Celebrate • Friends who are willing to drive me to where I want to go. |
|||||||||
|
Joyful Board Staff
|
Saturday, 8Aug09 ~ 26th Month on MP ~ Benicar only, cycle 10, day {10} MP Meds ~ 40mg Benicar, q6-4h ~ no Antibiotics ~ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 {3}{4}{5}{6} Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {4}{5}{6} Valium: 0.67mg @ bedtime {daily}, plus extra on days {4}{5}{6} Nature-Throid: 1/8 grain, daily Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; mostly NoIRs while on computer. Trips out during daylight on days {5}{9}{10}. Usual 98% NoIRs, coverings, etc. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 • muscle (pain, spasms, weakness) ~ / 4 / 4 / 4 / 4 / 6 / 8 / 8 / 8 / 8 / 8 / 8 • neuro (hypersensitivity, cognitive)~ / 4 / 4 / 8 / 6 / 4 / 6 / 6 / 4 / 4 / 4 / 6 • lymph (stiff neck, swelling, etc.) ~ / 4 / 4 / 4 / 4 / 4 / 6 / 4 / 4 / 4 / 4 / Detailed symptoms (From highest to lowest average symptom level; increased symptoms in bold) Timing of sleep cycles off; not rested after sleeping; numbness or tingling in extremities; mentally tire quickly; word salad (writing or typing wrong letters in words); physically tire easily from activity; muscles tight, especially neck, face, shoulders; migraine: visual, numbness, tightness at back of head; muscle cramps, spasms, or tremors; hypersensitivity to light, sound, smells, heat, or motion; feel distressed when feet are not kept elevated; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; GI upset, minor nausea, or lowered appetite; mid-back pain that increases with even minimal activity; crusty and/or irritated eyes after sleeping; blurry vision that comes and goes; post nasal drip; desire for things to be in order; intermittent joint pain (fingers, toes, knees, or hips); dizziness after change in elevation; rapid heart rate with activity; cold feet/hands. Total hours rest by day: Time asleep ~ average 9.5 hours (range 7-12) Time in bed ~ average 17.3 hours (range 12-22) Time w/ feet up ~ average 21.2 hours (range 19-23) _________________________________________________________________________ • The test to stretch out the Benicar dosing to every 6 hours ended on day 5. After returning to every 4 hours for Benicar the rapid heart rate, the need to keep feet up, and hypersensitivity came down a little bit. The joint pain decreased significantly. I have started using a blood pressure machine that detects irregular heart rates. (Maybe it is for peace of mind. ) Before returning to the more frequent Benicar it did detect an irregular heart rate after I had been standing about an hour to try to minimally assist with reorganizing some stuff in the garage. Since increasing the frequency of the Benicar, no more were detected. • The lymph glands on my head and neck continue to be more swollen and tender than normal. I am trying to remember to do some massage around the scalp, ears and jawline each day. I have also increased the time on the swing machine from 15 minutes each time to 30 minutes. • Even with the more frequent Benicar the facial numbness continues to occur after increased light in my eyes (migraine aura). These symptoms also seem to increase after listening to a meditation CD that is supposed to help me relax (go figure). The migraine does not come with a headache, but does come with very tight muscles around the back of the head and an overall sense of being mentally numb and/or blank. • Sleep cycles seem worse then in recent cycles. The two nights I tried to go to sleep before 4 am were full of toss/turn and awaking with an overall ache. I can't remember the last time I woke up feeling refreshed, but this was worse. I mostly felt tired and 'beat up'. • Since increasing the liquid trace minerals again, I find myself wanting to move around more. This has lead to more activity, which is good, I think. However I have had higher levels of muscle pain from it too. It really isn't very much activity, but it's more than I've known for quite a while. One day I took my BP at rest 92/53, pulse 86. After an hour of being on my feet I took it again (standing) and it was 63/46, pulse 122. I will keep tracking this to see if reconditioning helps with the circulation while standing. • Improvements: I am now able to stand for at least 10 minutes without discomfort (legs do ache later). I am now able to walk 50 feet easily most of the time. Able to sit with feet on the floor for at least 30 minutes without discomfort. Changing levels only is difficult about 20% of the time, during this past 10 days (usually related to exposure to fluorescent lighting in stores). More desire to do little 'sets' of muscle movements during the window of time when 'up' during the day. _________________________________________________________________________ Plan: stay the course on Benicar only. _________________________________________________________________________ Some things to Celebrate • All the people who make up the MP online community.
|
|||||||||
|
Joyful Board Staff
|
Saturday, 18Aug09 ~ 26th Month on MP ~ Benicar only, cycle 11, day {10} MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 {3}{4}{5}{7}{8}{9}{10} Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {1}{3}{5}{8}{9} Valium: 0.67mg @ bedtime {daily}, plus extra on days {1}{9} Nature-Throid: 1/8-1/4 grain, daily (increased from day {6}) Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; mostly NoIRs while on computer. Trips out during daylight on days {5}{9}, unavoidable. Usual 98% NoIRs, coverings, etc., but was careless about putting on stronger NoIRs when going into brighter locations. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 • muscle (pain, spasms, weakness) ~ / 8 / 6 / 4 / 4 / 6 / 4 / 4 / 6 / 8 / 6 / 8 • neuro (hypersensitivity, cognitive)~ / 6 / 6 / 6 / 6 / 6 / 8 / 8 / 8 / 8 / 8 / 6 • lymph (stiff neck, swelling, etc.) ~ / 4 / 4 / 4 / 4 / 4 / 6 / 4 / 6 / 6 / 4 / Detailed symptoms (From highest to lowest average symptom level; increased symptoms in bold) Timing of sleep cycles off; not rested after sleeping; numbness or tingling in extremities; mentally tire quickly; physically tire easily from even simple activities; feel distressed when feet are not kept elevated; word salad (writing or typing wrong letters in words); migraine: visual, numbness, tightness at back of head; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; muscle cramps, spasms, or tremors; hypersensitivity to light, sound, smells, heat, or motion; muscles tight, especially neck, face, shoulders; crusty and/or irritated eyes after sleeping; post nasal drip; mid-back pain that increases with even minimal activity; blurry vision that comes and goes; dizziness after change in elevation; GI upset, minor nausea, or lowered appetite; rapid heart rate with activity; intermittent joint pain (fingers, toes, knees, or hips); cold feet/hands; desire for things to be in order; dry and/or peeling lips. Total hours rest by day: Time asleep ~ average 8.5 hours (range 3-14) Time in bed ~ average 20.3 hours (range 14-22) Time w/ feet up ~ average 22.0 hours (range 18-23) _________________________________________________________________________ • For this whole cycle I have had an increase in numbness/tingling in the extremities. Not sure what is up with the nerves. Could it be healing? • Decided to trial some topical Benicar as others are reporting results for skin issues. It did speed healing of the small boil like eruptions by a couple of days. Seems that it may have had a systemic effect as well. Interesting. • After a careless light exposure (and an increase to 1/4 grain of N-T) I had a return to the overall sense of being mentally numb and/or blank. (I had decided to not use the relaxation CDs any more.) The light exposure was late in the day on day {5}. Neurological symptoms escalated for the next 5 days and is just now starting to stabilize again. • The second day after the careless light exposure dizziness increased. Taking my blood pressure while standing the results were 57/44 BP with irregular rate of 127 beats per minute. This was after pretty minimal activity, but it did include some changes in posture (bending/standing). When this happens it seems difficult to remember to use Benicar sublingual to help. • I tried going without the small doses of Valium for three days and found muscle spasms quickly escalated to intolerable. Returned to taking Valium on day {9}. _________________________________________________________________________ Plan: stay the course on Benicar only. _________________________________________________________________________ Some things to Celebrate • New presentation available The VDR nuclear receptor is a novel proxy for ... cancers. Last edited on Thu Aug 20th, 2009 02:25 by Joyful |
|||||||||
|
Joyful Board Staff
|
Friday, 28Aug09 ~ 26th Month on MP ~ Benicar only ===== 10-day report cycle #12 since last Zith ===== MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 {daily} Hydroxyzine: 12mg @ bedtime {daily} Valium: 0.67mg @ bedtime {daily}, plus extra on day {8} Nature-Throid: 1/8 grain, daily Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; mostly NoIRs while on computer. Trips out during daylight on days {6}{8}. Usual 98% NoIRs, coverings, etc.. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 • muscle (pain, spasms, weakness) ~ / 8 / 8 / 8 / 6 / 6 / 8 / 6 / 8 / 6 / 6 / 8 • neuro (hypersensitivity, cognitive)~ / 8 / 8 / 8 / 6 / 6 / 8 / 6 / 8 / 6 / 6 / 4 • lymph (stiff neck, swelling, etc.) ~ / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 6 / 4 / Detailed symptoms (From highest to lowest average symptom level; increased symptoms in bold) Timing of sleep cycles off; not rested after sleeping; physically tire easily from even simple activities; word salad (writing or typing wrong letters in words); feel distressed when feet are not kept elevated; mentally tire quickly; muscle spasms, cramps, or tremors; dizziness after change in elevation; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; numbness or tingling in extremities; mid-back pain that increases with even minimal activity; intermittent joint pain (fingers, toes, knees, or hips); crusty and/or irritated eyes after sleeping; post nasal drip; hypersensitivity to light, sound, smells, heat, or motion; blurry vision that comes and goes; muscles tight, especially neck, face, shoulders; GI upset, minor nausea, or lowered appetite; rapid heart rate with activity; desire for things to be in order; dry and/or peeling lips; migraine: visual, numbness, tightness at back of head; cold feet/hands; emotional fragility. Total hours rest by day: Time asleep ~ average 8.5 hours (range 0-14) Time in bed ~ average 19.8 hours (range 15-23) Time w/ feet up ~ average 21.3 hours (range 16-23) _________________________________________________________________________ • Biggest increases in symptoms of dizziness when standing up and intermittent joint pain. • Large stress event on day {1} seemed to trigger first sore inside mouth for months. I only took Lysine with high Arginine foods to balance out the amino acids. The sore cleared by the end of the cycle. • Use of topical Benicar around jaw and throat may have triggered some 'chewing fatigue' and difficulty swallowing. There were also some episodes of minor GERD type symptoms. • More active the second half of this cycle, but again registered irregular heart rate after pretty minimal activity (with changes in posture; bending/standing) a couple of times. I think I'll stick to small strengthening/toning sets laying flat on my back on the floor. My P.T. appointment was more difficult physically than I expected it to be. The first assignment was a pectoral stretch (standing in doorway) that made me feel strained/distressed due to the stretch but it's hard to put into words how it made me feel. The second was for strengthening the scapulae (or so the paper says). When I tried to do this simple exercise my upper back went into spasm and they had to show me a stretch to use when that happens. I have homework to do until my next appointment in two weeks. • Continued trouble with irregular sleeping times and unrestful sleep. If I stay up too long I get fairly strong leg cramping even if I am laying in bed. _________________________________________________________________________ Plan: stay the course on Benicar only. _________________________________________________________________________ Some things to Celebrate • Beauty in nature, in the arts, and in motion of all kinds. |
|||||||||
|
marion villa Member in Phase 3
|
joyful Are you sure you can handle the physical therapy with IPR about an 8 in the muscle category? I myself tryed to go to the pool and it was exhausting! even to breath inside the pool was a big effort because I noticed the water pressure in my chest. I couldnt swim, I moved myy arms and legs about 20 minutes, took a shower, came back home and hit the bed for 18 hours...... My wish is to be able to excercise and to gain force, shape and to move better but the real thing is that my energy is low to do that these days dont push too hard. marion |
|||||||||
|
Joyful Board Staff
|
Thank you Marion. You may be right, but I feel that even if I can only do it a little every day, it is better to work on that area of weakness as best I can until my body is more fully recovered. I wouldn't dream of trying to go to the pool at this point. |
|||||||||
|
Deedee Member in Phase 2 
|
You have probably already tried this, but the combination of aspirin, guaifensen and the quercetin have greatlyy helped me when I have muscle cramps. I have taken it up to 4 times a day when I was in a lot of leg and arm muscle pain. Lasat week, I also had a deep tissue massage and where she worked my legs arms intensely, along with lymph drainage, and this helped a lot. I am just coming off a 2 week muscle freak-out from the Clindy. It came packaged with the swelling of my lymph nodes. I like you "some things to celebrate." We have to remember what is working well in our lives. I have been thankful for my animals today. |
|||||||||
|
marion villa Member in Phase 3
|
go go girls!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! you are really wonderful |
|||||||||
|
thelymelight Member in Phase 1
|
Joyful, I go to physio every week..but I do not do any active stretches etc...I did a few yrs ago though when I wasn't on the MP..I have had to cut everything back again....I just have heat therapy on my back and neck for about 6 mins..then my therapist stretches out my neck etc and then my hamstrings then does some range of motion movements with my legs...Then I flip over and he works on my shoulders, back and low back and sometimes massages my hams....he doesn't do a massage on these areas like a RMT would..he uses more the ball of his hand and loosens up the muscles...This is a 30 min appt....I find it really helps to keep me supple and keep the low back pain down to a minimum....then I try to do my own yoga routine 2-3 x a week for gentle stretching and relaxation, which again is only 30 mins long...when I started back last winter, I could only do 5 mins.... Perhaps you ought to just be receiving passive therapy for the time being? |
|||||||||
|
Joyful Board Staff
|
Thank you Lisa, Deedee, & Marion. I asked for PT specifically for mid back pain. It may not work out. It's a very limited scope that is tightly controlled by the type of medical plan I am on. Not really addressing the main issues. I have the MP for that. If strengthening can be done at this stage it may make me more functional around the home and that would bring my heart joy. Last edited on Tue Sep 8th, 2009 10:42 by Joyful |
|||||||||
|
Joyful Board Staff
|
Monday, 7Sep09 ~ 27th Month on MP ~ Benicar only ===== 10-day report cycle #13 since last Zith ===== MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 {4}{5}{6} Hydroxyzine: 12mg @ bedtime {daily}, plus extra on days {3}{4} Valium: 0.67mg @ bedtime {daily} Nature-Throid: 1/8 grain, daily Minerals: 400mg Calcium, 200mg Magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; mostly NoIRs while on computer. Trips out during daylight on days {3}{6}. Usual 98% NoIRs, coverings, etc.. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 6 • muscle (pain, spasms, weakness) ~ / 6 / 6 / 4 / 6 / 4 / 4 / 4 / 6 / 4 / 4 / 8 • neuro (hypersensitivity, cognitive)~ / 8 / 8 / 6 / 8 / 6 / 6 / 6 / 8 / 8 / 6 / 4 • lymph (stiff neck, swelling, etc.) ~ / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 4 / 4 / Detailed symptoms (From highest to lowest average symptom level; increased symptoms in bold) Timing of sleep cycles off; word salad (writing or typing wrong letters/words); not rested after sleeping; mentally tire quickly; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; dizziness after change in elevation; desire for things to be in order; physically tire easily from even simple activities; hypersensitivity to light, sound, smells, heat, or motion; numbness or tingling in extremities; mid-back pain that increases with even minimal activity; muscle cramps, spasms, or tremors; feel distressed when feet are not kept elevated; post nasal drip; blurry vision that comes and goes; muscles tight, especially neck, face, shoulders; migraine: visual, numbness, tightness at back of head; crusty and/or irritated eyes after sleeping; dry and/or peeling lips; cold feet/hands; rapid heart rate with activity; intermittent joint pain (fingers, toes, knees, or hips); GI upset, minor nausea, or lowered appetite. Total hours rest by day: Time asleep ~ average 10.0 hours (range 6-14) Time in bed ~ average 16.6 hours (range 12-21) Time w/ feet up ~ average 21.1 hours (range 19-23) _________________________________________________________________________ • A couple of days with disabling levels of dizziness when standing up or moving around. A couple days of feeling able to move about the house with ease. Increase in 'pin prick' sensations on skin. A lot less intermittent joint pain. • Major flare of rashing around front of neck and on upper chest. Applied solarcain for immediate relief. Took antihistamine. Washed and waited to see if it would settle. Lasted for a couple of days. • Labs done this past week. Electrolytes all well within normal ranges. Creatinine still at high end of range 1.0mg/dL (range 0.6-1.1). HCT, HGB, RBC all remain slightly below lab range, but are virtually unchanged from last 3 results. BUN is at top of range at 19 mg/dL, nearly the same as result taken 6 months ago during hospital visit for neurological symptoms. TSH 2.82 uIU/mL, down from 3.66 in March; small doses of Nature-Throid may be helping with this value. • Days {8} & {9} struggled with significant dizziness. After some minor up/down movement, measured 74/42 BP, 78 pulse sitting, followed by 61/42 BP, 88 pulse standing. Spent those days with feet up nearly all the time. • Lots of 'detox' dreaming. Nothing worth remembering, just working through some toxic emotional 'antiques' hanging around in my subconscious. • Tried out taking a short walk in neighborhood after sunset with a walking partner. Did not make it past a full block before I needed to sit and rest for a while. Total walking, with rest included was about 20 minutes, very slow speed. After returning I was very, very tired. Basically collapsed on the couch for over 40 minutes and then worked up the strength to go to bed for a long night's sleep. Still did not awake refreshed. _________________________________________________________________________ Plan: stay the course on Benicar only. _________________________________________________________________________ Some things to Celebrate • Friends who still like you--even when you don't go out much these days. |
|||||||||
|
Limburg Member in Phase 2
|
Hi Joyful, Your body is working hard to get well. Annemarie |
|||||||||
|
Joyful Board Staff
|
Thanks Annemarie. It's true. The walk was nice. Just too long just yet. Juanita has got me thinking about restorative yoga... ...if I could drive again, then I could go to a studio not far away... Maybe before the end of the year, I will do *something* |
|||||||||
|
thelymelight Member in Phase 1
|
Joyful, Is there not a disabled transit service in your town/city that you could use to get you to a yoga class? To avoid having my folks drive me everywhere...if it is somewhere local I need to go..I book with our local disabled transit service... I have been using this service for years now...First I had to get an application filled out by my Dr....then once I was approved...I just call and book a ride 48 hrs in advanced....It is door to door service...I also have a powered scooter/wheelchair and sometimes go to the local mall with my scooter to do some shopping on my own w/out having to rely on anyone else to take me...helps to keep you feeling independent... Actually I just went to the mall on the bus w/ my scooter last nite for 1 & 1/2 hrs... Lisa P.S. I am hoping to start a restorative yoga class in a week or two...I can let you know how it goes....As I can no longer do the gentle yoga class I was attending in 2007/2008. |
|||||||||
|
Joyful Board Staff
|
Thank you for your thoughts Lisa. I am having some pretty strong symptoms following my attempt to work on the physical therapy. It's pretty disheartening. The payback for trying to do 3-5 repetitions of 4 moves while laying on my back (on top of a firm roll along my spine) is days of increased pain and needing to lay in bed doing very little. I have emailed to the other moderators, letting them know I am stepping away from reading/posting like I have been. And I am doing all the tricks I know to lower the neurological symptoms right now. That's why my profile location reads: Restville, Again |
|||||||||
|
Joyful Board Staff
|
Thursday, 17Sep09 ~ 27th Month on MP ~ Benicar only ===== 10-day report cycle #14 since last Zith ===== MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ Palliative Meds Extra Benicar: 20mg, sublingual, 1-2 {3}{5}{7} Hydroxyzine: 12mg @ bedtime {daily} Valium: 0.67mg @ bedtime {daily}, plus extra on day {5} Nature-Throid: 1/8 grain, daily Minerals: 400mg dicalcium malate, 200mg chelated magnesium; daily _________________________________________________________________________ Light Exposure Staying @ home with mostly very low lux; mostly NoIRs while on computer. Trip out during daylight on day {2}. Usual 98% NoIRs, coverings, etc.. _________________________________________________________________________ Key symptoms (max for period, plus daily max level from 0-10) 8 • muscle (pain, spasms, weakness) ~ / 6 / 8 / 6 / 6 / 8 / 8 / 8 / 8 / 8 / 6 / 8 • neuro (hypersensitivity, cognitive)~ / 6 / 6 / 8 / 8 / 8 / 8 / 8 / 8 / 6 / 6 / 6 • lymph (stiff neck, swelling, etc.) ~ / 4 / 4 / 4 / 4 / 4 / 6 / 4 / 6 / 6 / 4 / Detailed symptoms (From highest to lowest average symptom level; increased symptoms in bold) Timing of sleep cycles off; not rested after sleeping; physically tire easily from even simple activities; skin: itchy, ‘pin pricks’, minor eruptions, sandy/gritty; mid-back pain that increases with activity; word salad (writing or typing wrong letters or words); feel distressed when feet are not kept elevated; numbness or tingling in extremities; hypersensitivity to light, sound, smells, heat, or motion; mentally tire quickly; desire for things to be in order; dizziness after change in elevation; muscles tight, especially neck, face, shoulders; migraine: visual, numbness, tightness at back of head; blurry vision that comes and goes; intermittent joint pain (fingers, toes, knees, or hips); muscle cramps, spasms, or tremors; crusty and/or irritated eyes after sleeping; dry and/or peeling lips; post nasal drip; cold feet/hands; emotional fragility; rapid heart rate with activity; GI upset, minor nausea, or lowered appetite. Total hours rest by day: Time asleep ~ average 8.8 hours (range 6-12) Time in bed ~ average 20.9 hours (range 14-23) Time w/ feet up ~ average 22.5 hours (range 21-23) _________________________________________________________________________ • Most days with disabling levels of dizziness when standing up or moving around. Only parts of a few days of feeling able to move about the house with ease. • New physical therapy exercises seemed so easy and yet after my first trail doing them I have lost much of my energy and feeling of well being. Each time I scaled back (from 5 each, 3 each, 2 each). Each time I needed 24-48 hours to recover. Overall weakness, especially arm weakness has increased. • Tried using guaifenesin for neuro symptoms with hardly any relief. Tried tylenol for pain following mild physical therapy exercises with some minor relief. • Strong increase in migraine symptoms, especially hypersensitivity, especially light sensitivity, nausea, and right side numbness. Use of TENS unit seemed to help some with both migraine and back pain. • Joint pain is still low, however, when I use my hands I am getting more sharp, 'electric shock' type pain. • Overall muscle spasms are better controlled through the whole day when I am consistent about taking the hydroxyzine+Valium combination each night at the same time. However, there has been an increase in the amount of spasms around the lower ribcage since starting to try to do the physical therapy exercises. _________________________________________________________________________ Plan: stay the course on Benicar only, try using Quercetin for neuro symptom relief. _________________________________________________________________________ Some things to Celebrate • New youtube channel: http://www.youtube.com/user/DrTrevorMarshall |
|||||||||
|
Joyful Board Staff
|
Sunday, 27Sep09 ~ 27th Month on MP ~ Benicar only ===== 10-day report cycle #15 since last Zith ===== MP Meds ~ 40mg Benicar, q4h ~ no Antibiotics ~ _________________________________________________________________________ Key symptoms (current, plus daily max level from 0-10) 8 • muscle (pain, spasms, weakness) 4 • neuro (hypersensitivity, cognitive) 4 • lymph (stiff neck, swelling, etc.) _________________________________________________________________________ Short Update Some relief from neurological symptoms by using Quercetin 200mg every 8 hours. Muscle weakness, pain slightly less. Still on short break from moderating. Still living full of joy. |
|||||||||
|
BARNEY Moderator
|
Joyful, Hope you are enjoying your break and that you enjoy your time with your Dad. Sometimes we just need reminding that it's not about winning the race, it's about just crossing that finish line. (Karna’s thoughts) Drink plenty of water, xtra (sea) salt (regular salt is mostly chemicals) as needed, lots of rest while avoiding the sun and avoiding Vit D in your foods!!!!! HANG IN THERE, WE WILL MAKE IT!!!!BARNEY |
|||||||||
|
Sallie Q Member in Phase 3 
|
Joyful posted 21st Sept: ===== 10-day report cycle #14 since last Zith =====yeah well Joyful there is always something to celibrate while you are celebrating dare I suggest you follow your own advice and keep it slow enough while your immune sys. is digging so deep. That back pain could be kidneys working overtime. I have experienced bad kidney infection a long time ago and still remember the pain in my back. I recognised about a month ago that I occasionally get hit right in that spot, and when I knew I had been doing less bending stretching and lifting, not more: well, the penny dropped... my kidneys, of course Certainly I have been able to associate both increased light sensitivity AND increased physical activity with too much IP to handle in comfort. (Also increased emotional fragility, a dead giveaway that I need to up benicar and down both physical and mental engagement.) so glad you are taking time for a well earned, Moderate, rest Sallie ~~~~cruising along before I see my doctor for the next challenge ~~~~ |
|||||||||
|
Aunt Diana Moderator 
|
Joyful, Long before I had ever heard of the MP, I followed the guidelines of a well-known Lyme disease doctor from Long Island. Dr. Burrascano was one of the early "pathfinders" treating Lyme patients and had a good record of success. Among his many guidelines is the advice to abstain from exercise. It's hard to give this up, I know, but I think he is right. Our bodies are already being stretched to the limit....the muscle weakness we experience is as much neurological as it is physical. I know from my own experience that I have no tolerance whatever for exercise. This advice flies in the face of a world that is so pro-exercise as a cure all for everything. ....for us sometimes it only leads to setbacks. Sad but true. I hope you enjoy your time with your father. |
|||||||||
|
jcwat101 Research Professional 
|
I guess the trick is, if one feels up to trying a little exercise is to do just enough exercise to avoid an exacerbation (but it can be hard to tell ahead of time how much that is). I always found it hard to not overdo if asked to exercise. So, perhaps if one is going to exercise a bit, start with a little stretching and for any thing you try start with about 1/4 or less of what you think you ought to be able to do and increase only very cautiously. I used to tell myself not to increase from one day to the next because I inevitably would try to increase too much. I would end up increasing the right amount with this strategy. But for many people on the MP in the early stages, just doing the things one has to do is exercise enough (and sometimes even that wears us out). One will typically increase one's exercise/activity naturally as one feels better without trying. Joyce Waterhouse |
|||||||||
|
Carricol Member in Phase 3
|
I know when I try to do more than what is necessary to get by day to day my body says stop. I think that in due time our bodies will let us know when they are ready for more. |
|||||||||
|
thelymelight Member in Phase 1
|
Hello Aunt Diana, I thought it was interesting what you said about Dr. Burrascano and exercise.... I too was his patient, from years 2003-2005 and he gave me a handout about how important it was for CLD patients to do some form of exercise, if one wants to recover from Lyme...He recommends starting rehabilitation with heat therapy, range of motion exercises etc...with a physiotherapist, then adding in stretching etc, then slowly progressing to a formal exercise program..He found that it helped people in their recovery.. I myself have been doing physio for 2 1/2 yrs now...In 2006 I was doing ozone therapy with abx and was able to add in the bike for 1 min and doing some exercising for the larger muscle groups, (shoulders & thighs)....But since stopping the ozone therapy and my hydrocortisone, I have regressed in what I can do...So I am back to just the stretching/gentle yoga and going to physio once a wk to keep things fluid...especially in my spine & low back I am curious, what years were you a patient of Dr. B's? Cheers, Lisa |
|||||||||
|
Aunt Diana Moderator
|
I never was a patient of Dr. Burrascano.....I had only printed off the info from his website. I tried to get appt. with him but he was so busy at the time and the trip from Massachusetts to Long Island was not an easy one, so I never did get to see him. Shortly after, he retired. I was a big aerobic dance fan back in those days so when I recall the no exercise rule from his website.....that must be what he was referring to that I remember. No aerobic exercise...because I certainly gave up the aerobics and was better off for it. (I used to practically kill myself trying to keep up a light aerobic routine) What you say only makes sense....I hope I didn't mislead anyone. I think we all need to tailor our exercise routines to our particular reality...I might discuss physical therapy with my new doctor....I might be at the point that I could handle it. |
|||||||||
|
Joyful Board Staff
|
Friday, 23Oct09 ~ 28th Month on MP ~ ===== Stopped antibiotics May of this year ===== Key symptoms (current, max level from 0-10) 4 • muscle (pain, spasms, weakness) 4 • neuro (hypersensitivity, cognitive) 2 • lymph (stiff neck, swelling, etc.) _________________________________________________________________________ Brief Update Migraine: Triggers seem to include any physical exertion, bright light, stress, dehydration, and low blood sugar... still learning to manage. Main symptoms are hypersensitivity (w/ distress), numbness of face, and low mental function. No medication seems to help, only resting in low stimulation environment relieves symptoms. Muscles: Weakness, pain still increases with activity. Spasms are easily triggered with normal actions. Stretching and strengthening are helpful and necessary, but must be paced very conservatively (every 3rd day, lots of breaks during 'routine'). Sleep: Unrestful at night, deeper when sleeping during the day. Improvement: I have discovered if I take a real rest frequently (quiet room, no light, flat on back), I am finding I have the strength to do more activity overall during the day. Test result: 25D level is 6 ng/mL. |
|||||||||
|
thelymelight Member in Phase 1
|
Hello Joyful, Glad to see your levels of IP (your numbers have come down from an 8 to a 4). Yes... resting thru out the day helps me to have a good day...I usually have to rest for 30 mins late morning, then by 3-4pm I have to lay down again but for 2 hrs..as this is when my adrenals are at their lowest and my pain and fatigue increase significantly...Then I usually rest in the evenings again for 30 mins - 1hr , at about 8pm...I go to bed at about 11:30pm..but usually don't get to sleep till sometime after midnight.. Did you read my post about my experience going to the restorative yoga class?...I have also just started seeing an Osteopath...It is something that Dr. B highly mentions on his website that is very beneficial for people going thru healing.... Cheers Lisa |
|||||||||
|
BARNEY Moderator
|
Hey Joyful, Caught your short update. After quite a while on MP... I learned to sleep when our bodies allowed us.......many times during the day. It reminds us when the babies are little and they get their days and nights mixed up. There is no 'sin' to sleep during the day IMHO. I did, however, miss your 'what to celebrate'. Are you doing better emotionally? You always light up my day when I see your posts. Don't forget to drink water, please. HANG IN THERE, WE WILL MAKE IT!!!BARNEY |
|||||||||
|
Joyful Board Staff
|
Thank you Lisa for your thoughts and experience with rest during the day. Yours too Barney. Yes, the levels on average have come down, but have been higher again recently. I think due to an unavoidable increase in my stress as I take care of an urgent matter on the home front. Restorative yoga does look inviting. However, until I am comfortable driving myself, it's not going to happen in a class setting. And I find keeping track of what I am doing on my own pretty challenging right now. I'm not depressed though. Just tired and sore alot. |
|||||||||
|
Juanita Member in Phase 3 
|
Hang in there, Joyful. If I were a betting soul, your nose is the one I'd put my last dollar on for finishing the race. Slow race, mind..... *as we all crawl forward 1/4 inch per hour* |
|||||||||
|
Joyful Board Staff
|
Thank you Juanita... |
|||||||||
