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Alayne
Member in Phase 3
| Joined: | Wed Sep 21st, 2005 |
| Location: | California USA |
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Posted: Tue Jan 3rd, 2006 21:31 |
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Sat, 12/31/05, Day 30 Full MP, Beni 20mg crushed QO4, Mino – none
Discovered I'd messed up my Full MP days. Now they're correct, but can't fix the past ones!
Sleep: Sleep by 1:15. Woke up 9:03. Plenty of dreams, but not as many remembered wake-ups. Woke up rested.
Sx: Nighttime Morton’s neuroma flare, foot still a little tingly in morning. Felt okay upon getting up, then by 11 - underwater and all over herxy. Lower to upper back and neck stabs (not aches), sternum/solar plexis throbs and stabs, rib twinges and stabs. heavy legs and arms. Sore shoulder joints. I’ve had a few heart “jumps” in the past couple of weeks, including today. Today, I feel like my heart hurts, but it’s probably not my heart, since the pain is pretty dead center. I would think that heart pain would be more to the left? Actually, can anyone tell me if that’s right?
The pains are different. Today’s herxing feels more aggressive, almost angry.
I often ache and sometimes throb, but today the pain is sharper, more specifically located and intense. And a very strange feeling from my chest to throat that I can’t describe. Of all the herxing today, this very odd feeling is the most unpleasant because I can’t pin it down. All tolerable, but I sure don’t feel like going out tonight. Hopefully it’ll pass….
5:30 – Started feeling better (Yeah!). Eventually tamed shrubby haircut and went to small party at 9. Had an absolutely lovely time and left at 12:01. 
Something is shifting, something major. What’s so different is that I had a lovely time at the party and did at Thanksgiving as well. I’ve grown less and less social over the years, I think mainly because get-togethers tire me out – both physically and emotionally. I used to dread going to social functions. It’d take everything I had in me to actually get out the door. Once there, my body/brain would kick into overdrive, I think to compensate for low enthusiasm and/or fatigue. Or it was an unconscious reaction to stimulation. I’d become very animated, fun, and chatty. It was almost a desperate/manic state to be in, and I rarely thought, “Well, that was fun.” Instead, I’d go home exhausted both psychically and physically for days. I think my brain/body knew it couldn’t handle the stimulation well, so would grossly overcompensate. One on one was fine, 2 okay, 3 or more started to really push it.
BUT, I felt no reluctance to go to the New Years party – none! There were 8 others and I spoke with them all comfortably and easily, felt no compulsion to bolt, and although I got a little giddy at one point, it was both enjoyable and fleeting. When we left, I didn’t have that sense of relief that it was all over, just a pleasant thought of how nice everything had been and how nice it was to go home. I may not have slept well, but the next day I felt great – both physically and emotionally. WOW. This may not sound major to many, but man, it’s a HUGE change for me.
Energy: 65-85%
Mood: Just fine…quiet
Improvement: Lips are getting better!
Sun, 1/1/06, Day 31 Full MP, Mino 37.5 mg 11:30 pm (this extended last 25mg dose to 2.5 days)
Sleep: Sleep by 1:30. Woke up 1:45 pm. Vividly dreamed, tossed and turned. When I woke up for my 4 am meds, I felt awful. Sour stomach, thought I would throw up…didn’t. Took ages to fall back asleep, and then it was just vivid dreams again and a zillion wake-ups. Finally kind of slept from about 10-1:45. Have no explanation for it, except that I drank some mulled wine that’d been boiled to burn off the alcohol. Could this be the cause? Oh wait, I had 1/2 glass champagne as well, over the course of a few hrs. Maybe that was the culprit. Dunno. Either way, I was acidic and nauseated until 10 am or so.
Sx: Morton’s neuroma flare during the night. Felt fine when I finally got up and only had a few extremely minor twinges here and there. Probably wouldn’t have noticed them, were I not paying attention. Decided to take mino in evening because herxing had stopped.
Energy: 80-85%
Mood: Decent and calm, with a couple of blips.
Mon, 1/2/06, Day 32 Full MP, Mino – none
Sleep: Sleep by 1. Woke up 8. Dreamed all night about CWD bacteria in Vietnam. Even if the people got better with the MP, the bacteria were ever present in the water, so when they bathed or showered, they’d get reinfected, unless we devised some kind of portable and very special filtration system. Never found a proper filtration system and I woke up feeling badly for the Vietnamese. Watched a Vietnamese film the night before, thus the geographical link. Night was also filled with the requisite wake-ups, tossing and turning.
Sx: Nighttime Morton’s neuroma flare. Got up and felt great. No herxing whatsoever until 7pm. Felt absolutely fantastic, bubbly, full of life, laughed a lot! It was just lovely and I enjoyed every moment of it. What a window! I didn’t even have the ever-present reminder of heavier limbs and body. (This feeling lessens greatly at times, but never like this!) Of course, it couldn’t last forever, because one must still kill bugs! I dropped around 5:30. It’s so funny how quickly the herxing can hit. Smiling one minute,and suddenly weighing 1000 lbs the next. Totally fatigued, then pains set in. The herxing was nothing new - mid-upper back, neck, head, ribs, sternum/solar plexis, upper abdomen. Oh, and a little tinnitus as well (L ear). Back to aches and twinges, so not as bad as yesterday, but enough to quiet me down and stay close to the sofa.
Note: Even when I was feeling fantastic, on top of the world, I discovered I still didn’t have full brain capacity. I read the news for a couple of hours (Yes! A couple of hrs!) and bf asked if anything had particularly interested me. I told him yes! There was a particular article that had really struck home. Then I tried to explain it to him, but couldn’t. Just couldn’t pull the information together. I had a sense of understanding it inside my head, but couldn’t articulate it at all. Had to show him the article and read through it aloud to give him my points. I can get a nebulous sense of what something means, but providing a cohesive and detailed picture is virtually impossible. This is why I can’t teach anymore, amongst other things.
Energy: 90% - 70%
Mood: Excellent, with a couple of snarky comments.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
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Posted: Wed Jan 4th, 2006 23:50 |
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Tues, 1/3/06, Day 48 Beni, Day 33 Full MP, Mino – none (extending to 2.5 days because still herxing)
Sleep: Sleep by 1. Woke up 9. Dreamed far too much about the protocol – all night. It seems that I don’t get lost in these dreams, like one does in typical dreams. I’m aware of them while sleeping and am annoyed that they won’t stop. I also toss and turn a great deal during the night, which often wakes me up. This has gotten worse in the past few weeks, with a few "decent" nights thrown in. Strangely, and happily, I don’t wake up feeling exhausted or feeling as if I need more sleep. I very very rarely nap. Somehow I’m getting enough sleep to carry me through the day. It’s just a very different and not always pleasant kind of sleep, and I’m often happy to really awaken and get away from the dreams.
Sx: No Morton’s neuroma flare! No hard herxing today, just the typical herxy ribs, rib tips, sternum/solar plexis, mid-upper back, neck, and head aches and pains. Still herxing somewhat in evening, so decided to extend Mino until tomorrow. Made headway on getting caught up with journaling, writing, and answering emails.
I write almost every day, not just to document my progress here, but to also challenge my brain to some capacity. Much of it is maudlin rambling, but every now and again, something good comes out and it’s well worth the effort. My vocabulary recall is greatly weakened, but every now and again a big word will pop out and give me hope that my old vocabulary’s just locked up in storage for the time being. Also, what used to take me 30 or 40 minutes to write, now takes 3-4 hrs. On average, it takes about 3-15 sentences and many revisions to ultimately come up with one sentence that makes some sense. I’ve found it’s best to write, revise as much as possible, then walk away for a while. Each time I come back, I’m more able to see what I’ve missed– punctuation, spelling, and entire paragraphs that make absolutely no sense. The effect of the bacteria on the brain is fascinating in its own right. Frightening as well.
I’m going to start charting my “mental energy,” seeing as how that fluctuates as much as everything else. Thanks for the suggestion, Tom! This will be based on cognitive skills, ability to focus, think conceptually, etc.
Mental Energy: 75%. Was able to focus better, albeit didn’t do well when interrupted. Some writing was a little more cohesive the 1st time around. The act of mult-tasking is now foreign to me and when I try it, everything suffers. I can only think of and do one thing at a time.
Phys Energy: 75-80%
Mood : Very good
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
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Posted: Thu Jan 5th, 2006 19:26 |
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Wed, 1/4/06, Day 49 Beni, Day 34 Full MP, Mino 37.5mg 11:30 am
Sleep: Sleep by 1:40. Woke up 9:03, dozed ‘til 10. Many medically related dreams and experiments, including me teaching a medical class. Knew I was dreaming, especially when I was teaching this class I’d never prepped for, let alone understood the subject matter. Thus, I wasn’t anxious in the dream, just curious and wondering why the powers that be would allow that to happen.
Sx: Slight Morton’s Neuroma flare. I think it probably flares to some degree each night, but I’m only aware of it when it hits during a more wakeful period. Last night I didn’t feel it until the alarm pulled me out of a deeper sleep.
12:30 - Started feeling warmish and underwatery. No specific aches or pains, just more tired.
2pm – Inner part of knees started slightly prickling and burning. Spread to inside of thighs. Maybe this is like the ant bite sensation others write about. My knees burned when I started the Beni, but haven’t felt it for several weeks now. Body getting heavier.
2:30 – Entire legs tingly, burning. Was talking on phone and suddenly couldn’t understand the conversation. I felt rather anxious as well, so had to hang up. This lasted until 3:30 or so.
4ish – Lower-upper back stiffness & aches, with additional muscle pain down lower right side of back. Funny feeling in chest from back to front. Aches and throbs behind sternum. Rib tips sore.
5:45 – Herxing a little more mildly, I drove to a friend’s house for dinner. I know it sounds small, but I haven’t driven myself anywhere, other than to twice pick up a prescription and three times to the grocery store since October. And those were heady excursions! Just really wanted to see if I could do it. In my “past life,” as in up until last week, I would definitely have canceled had I not felt well, which explains why I haven’t seen some friends for a long time. I had a very nice time, even though I often couldn’t remember words or had to backtrack on the conversation because I got lost. I promised my friend it’d all be different soon enough. Was very tired upon getting home. Much more than usual, which really points out the need for additional rest when one is herxing and the body’s fighting. I’ll probably not head out again anytime soon when feeling like that, but it was good to see that I could “handle” it without falling apart.
The herxing today was all tolerable, but very noticeable. Wouldn’t want it to be much stronger.
Mental Energy: 75% until 2:30. After that, 60-65%, then back to 75% for the evening.
Phys Energy: 75% until 2:30, then 65%, then back to 70% for evening.
Mood: Good, even during the hour of slight anxiety. A tad less tolerant today.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Aussie Barb
Member in Phase 3
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Posted: Thu Jan 5th, 2006 19:36 |
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Thanks Alayne
re Mino 37.5 mg
Please check all precautions / instructions in the Phase One Guideline with your Dr. It is important to follow the essential aspects and guidelines as written for safety and efficacy of treatment..
You may wish to print this FAQ and Information for your Dr.. it will help those who come after you.. Why do you recommend that we NOT take tiny doses of minocycline? How does low dose minocycline work says in part: Dr. Marshall has spent years researching Th1 inflammation and developing an accurate pathogenisis which he has described in exquisite detail. Our large cohort of recovered, improving and responding patients verifies the efficacy of the protocol that the research team has developed to eliminate the underlying cause which is intracellular bacteria.
Please ask your Dr to call Dr Marshall if s/he wishes to discuss any concerns.
Anecdotal reports of beginning at and in increasing the MP antibiotics in increments of 25 mg have been positive.
But anecdotal reports of beginning at and in increasing these antibiotics in smaller increments than 25mg have not been positive.
It appears that the antibiotic dose needs to be changed a significant amount to alter the immune system response. Dr Marshall has said, "The body/immune system can *get used to* a dose level and can stop responding."
all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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jillian
Member in Phase 2
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Posted: Thu Jan 5th, 2006 19:38 |
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Alayne,
FYI, I found I can somewhat 'control' the contents of my dreaming. Pre-MP when I slept so terribly, I got in the habit of keeping upbeat, positive, books/magazines-on-MP3/CD on low during the night and while I slept. (I have a 5-cd player that repeats itself so I don't listen to the same thing over and over again). Now that I'm on the MP, I've discovered that if I don't have this on in the background while sleeping I get bizarre, sometimes very negative dreams. Good thing I'm single so I don't disturb a mate!
'til later,
Jillian from North Dakota
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PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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Alayne
Member in Phase 3
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Posted: Mon Jan 9th, 2006 21:47 |
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Thanks Barb! I fully understand your concern and am thankful you all are so on top of things! Believe me, I am certainly not trying to rock the boat here. The truth of the matter is, that legally, of course, I must follow my doctor's orders. If he were new to the MP, it would probably be different. But he also has other MP patients who have done and are doing very well at this rate of dosing, so his decision is based on personal experience - something I can't change! However, he is always interested in new MP information/updates and I assume watches his other patients carefully, as he does me. Thus far I've done very well, but do know if something adverse happened, he would very quickly and easily change things on an individual basis.
Cheers! Alayne
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Mon Jan 9th, 2006 21:54 |
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Jillian, your tip is funny because I actually did try listening to a special Sleep CD. Bought the CD's last summer, rigged up a boom box and speakers at the foot of the bed, was ready to try and nod off...until I smelled smoke. One of the speakers was burning  and the whole unit ended up in the trash!
Story short, I never bought a new CD player, but your post makes me want to try it again...and more safely! Perhaps some speakers for my computer. Hmmm. Thanks! Alayne
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Mon Jan 9th, 2006 22:30 |
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The MP still hasn't worked on my longwindedness. I also want to state that my herxing may sound worse than it is. It's a tough call to make when trying to describe symptoms for others. On the other hand, I, like all others here, have become accustomed to a good deal of discomfort, so perhaps I'm not the wimp I sound like? 
Thurs, 1/5/06, Day 34 Full MP, Beni 20mg crushed Q4H, 37.5mg Mino – none
Sleep: Sleep by 1:20, woke up 9:15. Was very tired last night and fell asleep more quickly than usual. The Xyrem generally takes about 40 minutes to kick in, but fell asleep w/in 20 minutes. Somehow forgot to take my 2nd Xyrem dose at 4 with the Beni, and my eye popped wide open by 5. Took meds and fell into another dream-filled sleep.
Sx: Nighttime - Was quite warm when I went to bed last night. Since I’m too cold about 99% of the time, and sleep with a heating pad on my feet, it was noticeable. I had to take most of the blankets off and was still too warm. Checked my temp – normal. Awakening a few times, my hip joints, esp. the L one, were slightly tingly and burning. My left buttock kept falling asleep, which is quite the odd feeling. Legs tingled as well and Morton’s neuroma flare almost had me crying/yelling for the first time. Shoulders quickly got sore when sleeping on side and had slight headache.
Morning – Crackly mid to upper back and neck, lower back muscles tight and sore, buttock muscles sore, especially when rubbed, hips slightly sore.
Afternoon-Evening – Buttock and hip soreness disappear.
Lower-upper back and neck muscles sore, as if I’ve worked out too hard (haven’t!). Constant headache – entire head, including face! Head also feels stuffed with cotton and hearing feels muffled, even though I can hear fine (hard to explain). Maybe it’s part of the underwater feeling. Chest pains behind sternum, have no idea if it’s cardiac related or not. Legs heavy, legs/feet and arms/hands prickly on and off. This might be my first all body herx, but without abdominal pain. Low grade fever for 1st time in a while – 99.5. Experiencing increased dizziness when standing up
7:30 pm – Fever gone, feeling somewhat better. Still achy in all of the above-mentioned areas, but less.
9-midnight– Feel awful again. All over pains, the worst being from lower back on up. Quite dizzy every time I stand up. Was dizzy once while sitting down, as in my vision slightly blurring and shifting. Arms and legs quite heavy. Ice pick in R ear. I was doing dinner dishes and suddenly wanted to burst into tears and had to go lie down. Felt like such a wimp today. This was probably my worst physical herx day yet. Tolerable for a day, but probably wouldn’t be for days on end.
Mental Energy: Not bad, all things considered. 75%
Phys Energy: 70%-60%
Mood: Okay if alone and not talking. Otherwise, quite edgy, intolerant, impatient, and not far from a lot of displaced anger. Such a joy I am!
Fri, 1/6/06, Day 51 Beni, Day 35 Mino – 37.5mg
Sleep: Sleep by 12:25. Woke up 7:30.  Went to bed very tired and fell asleep quickly. Lots of dreams as usual, but I couldn’t remember them when I woke up, except they were CURE related. Woke up at 3 for meds and discovered the Beni was missing. Had to walk around and find out where I tiredly put it down before bed – in the kitchen. Duh! Showered off as well because of nightsweats. Loud sound woke me up at 7:30 and couldn’t go back to sleep after that.
Sx: Woke up with headache and very cranky (oh wondrous day!), but it eased by 11am. Body felt a little “abused” from day before, but much much better! Very tolerable aches and pains with some fatigue. Most noticeable was solar plexis herxing. It often hurts to touch the soft area just below the sternum.
BF drove for doc’s visit. About halfway there, realized I’d forgotten my Beni at home – swift. Doc didn’t have any samples either. All in all, I was exposed (without Beni) to direct and indirect sunlight for almost three hours. Was covered up, used K-cream, and didn’t suffer any apparent sun flare except for a tiny bit of eye burning for a couple of hours. I wore double glasses too. Took Beni as soon as I got home.
Later in the evening had some harder center chest pain. Before going to bed, a few very sharp, almost electric, bolts of pain shot from center chest down to the right. They were so startling, I doubled over and clutched my chest. I’ll say again, this herxing is pretty interesting business!
All in all, what a difference to yesterday! Like I said, yesterday was tolerable, but wouldn’t have been if it had continued for a number of days, that’s for sure. The respites enable me to face the challenging days.
Mental Energy: 70-75%. Couldn’t spell properly when writing by hand at doc’s office, couldn’t focus on writing anything later on either. But, was able to read some news articles and talk coherently to a student!
Phys Energy: 75-70%
Mood: Okay, mixed with some obligatory small doses of intolerance, impatience, overreactions and anger.
Sat, 1/7/06, Day 52 Beni, Day 36 Mino – 37.5mg 9 am (extended to 3 days because still herxing)
Sleep: Sleep by 12:30. Woke up 2:30 before meds alarm, then 8:15. Got up at 8:45. CURE related dreams. Many wake-ups.
Sx: Nighttime - Big time Morton’s neuroma flare at 2:28am. I woke up sensing something was wrong, then very suddenly, my right foot started in. It was so painful, that my entire body involuntarily twitched and moved. Special breathing didn’t help. Finally, after three very long minutes, it stopped. Then I got too hot and had to throw off the blanket. After about 15 minutes, I cooled down and went back to sleep.
9am – Took mino. Runny nose and sneezing started by 9:30 and ended at 10. Legs heavier by 10.
11 – Pains in R shoulder pain above scapula, L buttock & hip. Ribs start in.
Rest of day, physical herxing pretty minimal. More tired than usual.
Mental Energy: 70% Stuttered a bit today and had some word processing moments. Example: At the store, instead of asking about the “Leg of Lamb Steaks,” I said “Lamb of Leg Snakes.” It was strange seeing the words and hearing something so different come out. Laughed my head off too. And no, I didn’t buy the lamb!
Phys Energy: 70-80%
Mood: Extreme – easily enraged, very intolerant and overreactive until 5:30. Eased up after that.
Sun, 1/8/05, Day 53 Beni, Day 37 Mino – none
Sleep: Sleep by 1:40. Woke up 8, then 9, then 10:30. Many dreams. Got up because had two catastrophe dreams after 10 that made me too anxious to sleep again.
Sx: Physical herxing minimal. Intermittent slight headaches, stiffness upon getting up, backaches, a little body heaviness. Main symptom was off and on chest pain.
Mental Energy: 70-75% Pretty good for these days. Moments when I couldn’t understand what bf was trying to explain to me. Easy stuff, apparently, but wouldn’t sink in.
Phys Energy: 75-85% At least I think so. One of these day's I'll see how I feel walking a longer distance. But for my more limited movements, I'm feeling quite strong!
Mood: A little better, with fewer “rage” moments. Felt a tad more tolerant. Still, far too easily enraged when buttons are pushed. Sense of humor suffers as well. However, enough good mood moments to make me remember I’m not completely nuts.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Tue Jan 10th, 2006 21:52 |
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Mon, 1/9/06, day 54 Beni, Day 38 Full MP, Mino – 4th dose 37.5mg 9:30am
Sleep: Sleep by 2. Woke up 9. Woke up because of dream induced anxiety. Something about not having submitted all the proper forms in time to the FBI…yeah, I know. Many dreams, but not CURE related, as far as I recall.
Sx: Medium nightsweats. Actually dreamed I got up and showered – but didn’t.
10 – 1/2 hour after mino, head starts feeling kind of cottony. Mild, but constant tinnitus (it usually lasts for minutes at a time.)
12 - Ant bite/burning feeling moves around legs and always around knees. Some sharp pains in the knees as well, mainly in the L one. I guess my knees have plenty to clear out, as I’ve had plenty of problems with them for about 25 years.
Rest of day – Mild and intermittent ant bites, tingly legs, headache, center chest pain.
Evening – Above herx sx’s increased, plus mid-upper back & neck and headache. Also VERY stiff and sore after sitting/watching DVD for a couple of hours, even though I’d moved around a lot. Felt quite fatigued.
Mental Energy: 75-80%! Managed to get a number of things done, ie.: phone calls, bills, etc.
Phys Energy: 75-65%
Mood: Okay, mixed with the usual emotional herxing. My humor has receded quite a bit over the past few days, and I feel rather dour. Will welcome its return!
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Wed Jan 11th, 2006 20:41 |
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Tues, 1/10/06, Day 39 Full MP, Beni 20mg crushed q04, Mino – none
Sleep: Sleep by 1:45. Woke up 8, dozed on and off until 10:45. Took stronger 2nd Xyrem dose to see if I could sleep more deeply and/or longer. From about 5 on, it was just dream after dream. From 8 on, the dreams were anxiety provoking and I woke up every 15 min or so thinking I had to do something right away. Not very restful, so will go back to normal dosing.
Sx: Tingly prickly legs and feet. Headache. A little fatigued. Early afternoon put together a curry for dinner and had a bit of a hard time getting it all together. Clearly, cooking something with more than two spices and steps should be considered as multi-tasking (my nemesis these days! ) Legs got stiff and sore quite quickly when standing in the kitchen. Later: Crackly and sore mid-upper back and neck.
Have forgotten to mention mildly swollen salivary glands over the past week. Also, my nose has been more runny this past week, but not stuffy. It’s not the faucet that some folks have here , but noticeable. I’ve also forgotten to mention that I’ve been able to breathe more easily through my nose than I can ever remember. Through both nostrils too! Oh, I’ve also forgotten to mention that my lips are still incredibly dry and cracking extensions of my face.
And today I understand what ElizaH meant by her NoIRs hurting her out of the blue. Yesterday and today, my glasses feel too tight and am sore from the temples to behind the ear. As if my head has widened.
Mental Energy: 75%
Phys Energy: 75%
Mood: Okay & mixed. Waiting for humor to return! A familiar state has returned over the past few days – I’m having a hard time smiling or looking people in the eyes. Or listening to people talk. This used to happen to me from time to time. I guess it’s akin to crawling into a shell for protection. Perhaps it’s an instinctive acknowledgement that I need less stimulation?
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Thu Jan 12th, 2006 22:07 |
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Wed, 1/11/06, Day 56 Beni, Day 39 Full MP, Beni 20mg crushed q4h, Mino – none
Sleep: Sleep by 1. Woke up 7 for b-room, then 10:20. Took 5HTP last night to see if it’d help smooth out my sleep. I actually didn’t have a single CURE related dream, which was great! I did have lucid dreaming again, and the dreams were interesting. No anxiety either. Slept about 2 hours longer than normal as well.
Sx: Not much to speak of. Body fatigue, slightly runny nose and sore lips.
2 – sore and crackly mid-upper back, neck. Headache starts at 3.
Rest of day – the above, plus light and transient solar plexis/chest pain, leg antbites, sore rib tips.
Mental Energy: 70%. Can’t remember anything I could do other than send out some emails and post here. Have found it impossible to tackle a few form filling duties that are long overdue. Perhaps I’ll be able to embarrass myself into doing them by mentioning them here a few times.
Phys Energy: 75-80%% I’m still amazed I can go grocery shopping on my own AND carry the bags upstairs! It wasn’t too long ago I could barely walk, let alone go upstairs. There is still an ever-present heaviness to my legs, and I’m definitely weaker all around, but the difference since diligently avoiding sun/D and starting the MP is pretty amazing and gratifying!
Mood: Better, with far fewer irritable/anger blips and some short crying spells. Felt more sensitive to perceived slights, and generally responded with tears today instead of anger.
I feel I must reiterate every two weeks or so that the "old me" was a very nice, even-keeled, pleasant and patient person, with a good sense of humor. That said, here are two examples of the "new temporary (boy it better be!) me". :
1) Woke up feeling okay, stared at the ceiling, then suddenly burst into tears for absolutely no reason. Just lay there sobbing for 5 minutes, feeling totally bereft, but also lucidly remarking on how strange it was not to have a reason. Then recalled how much I dislike tears rolling into my ears and hair, so got up.
2) Self-control triumphs over irrational rage! Two girls cut in front of me at the grocery store. I’d parked my cart at checkout, went to grab some new lip balm, returned in 15 seconds, and there they were. In their 20’s, obnoxious, and seemingly oblivious to their surroundings – i.e.: other people. They’d even pushed my cart back! The long dark-haired hardened one sneered at me and I ever so desperately wanted to pull her hair, maybe even throw her to the ground! Her partner, reading a tabloid, wouldn’t move when I wanted to put my things on the counter. I could so easily have ripped the magazine from her hands and whacked her about the head with it, but somehow civilly asked her to move instead. In this maelstrom of emotion, I pulled up a distant memory of a similar situation, remembering that the “real me” should laugh at their antics and say something witty. Clearly incapable of that now, I thankfully realized that some dastardly dead bacteria were plainly seeking their revenge, trying to make a fool of me. Ha! I managed to leave Whole Foods unscathed, unbanned, unembarrassed, and proud that I’d kept the upper hand over the buggers!
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
Member in Phase 3
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Posted: Fri Jan 13th, 2006 19:36 |
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Thurs, 1/12/06, Day 57 Beni, Day 39 Full MP, Beni 20mg crushed q4h, Mino – 5th dose 37.5mg 9am (q72h)
Sleep: Sleep by 1:45. Woke up 8:15 – garbage trucks! Felt burning of Morton’s neuroma when woke up for meds, but it was milder than usual. Several wake-ups during the night.
Sx: Felt the mino within 15 minutes - These sensations stuck around all day: Familiar all over underwater sensation, with cotton-filled and heavier head. Transient crackly mid-upper back & neck, plus sore torso muscles. Quite the achy back altogether. Solar plexus pain, ant bites up and down legs through body and noticeably in hands & feet. Some burning around knees. Headache, tired legs, light tinnitus. If you know what the muscle cream Icy/Hot feels like, that’s a sensation I’m getting in areas of my neck, back and legs. Mostly in the center of my upper back/lower neck. Rapid & stronger heartbeat. NoIRs are “too tight,” meaning my head’s swelling? Legs and hips heavy all day and more so in evening. Started period (2nd one that’s on schedule in a very long time!!). Took 400mg Ibuprofen for cramps (last time needed 600mg!).
I’ve forgotten to mention that my near vision has almost disappeared over the past couple of weeks. My eyes first started hurting whenever I looked at something closely. Now I can’t bring smaller writing or objects into focus. For example, needed a magnifying glass to read the lip balm ingredients. I did read here and here, so feel better, hoping this is part of herxing. Any comments on this welcome!
Thought: Since I’m responding so quickly and strongly to the mino, I now wonder if I’d be having a tough time with 25mg dose increases, instead of the 12.5. To be honest, I really wouldn’t want much heavier herxing than I’m having.
Mental Energy: 70% Not able to concentrate on much today, let alone follow through with anything. Okay, as shocking as it sounds, I admit it…zilch motivation. Also had word recall difficulties on phone conversations and got confused trying to explain a simple aspect of the MP to someone. Couldn’t conjure up the info, although I had a vague concept in my head.
Phys Energy: 70% Actually didn’t move around much, so can’t be really sure, but got pretty tired while fixing something in the kitchen, if that counts.
Mood: Was alone all day, so pretty good! Didn’t cry, yell, or lose my patience once!
Got a new lip balm last night with lanolin. Woke up to much better lips! Coincidence? Perhaps not! Later: Rats, lips got drier again towards evening.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Aussie Barb
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Posted: Fri Jan 13th, 2006 20:05 |
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Alayne
Thank you for posting.. re vision: Others with no previous history of eye inflammation have reported vision disturbances that do not seem to show in an exam.. they have proven to be herx related in that they do fluctuate with herx. the difference to improved vision can be more obvious if medicating to dampen a herx.. If you are concerned please check with your Opthalmologist. see Will Herxing cause increased eye inflammation?
re herx from mino 25mg changes: see Why do you recommend that we NOT take tiny doses of minocycline? How does low dose minocycline work? says Anecdotal reports of beginning at and in increasing the MP antibiotics in increments of 25 mg have been positive.
But anecdotal reports of beginning at and in increasing these antibiotics in smaller increments than 25mg have not been positive. <<
ie the mino not only has the effect of causing herx as it decays, it also has a modulatory effect on the immune system. and by not changing the dose enough the immune system has in some cases seemed to have stopped responding to that modulatory effect when there has not been enough change in dosing.. the effect of an immune system run that is not being modified can creep up on you.
thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Alayne
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Posted: Fri Jan 13th, 2006 20:38 |
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Here are also some changes in my labs, in case anyone's interested. The first labs were taken 6/05. The second labs were done 12/05.
My blood chem panels went from normal to several lows and one high, but I'm not worried, as it seems to be typical on the MP.
CBC w/Diff
WBC - 8 --> 3.7 (Range: 4.11-11.3 x10*3/cumm)
RBC - 4.5 --> 3.53 (Range: 3.90-5.10 x10*6/cumm)
Hemoglobin - 13.6 --> 11.6 (Range: 12.0-16.0 grams/dl)
Hematocrit - 43.5 --> 35.3 (Range: 36.0-48.2%)
RDW - 11.6 --> 10.5 (Range:10.8-14.8%)
Platelet Count - 163 --> 143 (Range: 150-400 x10*3/cumm)
MPV - 12.1 --> 12.4 High (Range: 7.1-12.1 fl)
Other changes:
Neutrophils - 79.9 --> 48.5 %
Lymphocytes - 12.9 --> 39.5 %
Monocytes - 6.5 --> 10.5 %
Eosinophils - 0.5 --> 0.9 %
Basophils - 0.2 --> 0.6 %
Hormone changes
DHEA: low --> low normal. (Stopped taking in Nov.)
Pregnenolone: low --> low normal. (Stopped taking in Nov.)
Thyroid: Dx'd hypothyroid.--> (Nov) Dx’d hyperthyroid. Stopped taking thyroid meds.--> (12/05) Thyroid normal!!
Progesterone: very low --> very low normal. (Take bio-identical prescription.)
Free testosterone: very low --> even lower. (Take bio-identical prescript.)
Vitamin D Panel
YIPPEE!!
Note: First labs were done 6/05. AFTER that, I was told to take fish oil and 3 other supplements with D. I did this for almost 3 mos, until discovering the MP. That means my D levels would've risen from those initial labs, right? Which means my drops are pretty good!? I wonder if all my weight loss - i.e. little fat now, helped to lose the D faster. Any comments?
25-D 34 --> 22
1,25-D 69 --> 44
Last edited on Fri Jan 13th, 2006 20:41 by Alayne
____________________
CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Alayne
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Posted: Sat Jan 14th, 2006 17:39 |
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Thanks Barb! I now fully recall reading that your eyes have bothered you as well, and'll hold off getting glasses. Think I'll just add a huge magnifying glass to my already socially strange appearance and freak a few more people out.
ie the mino not only has the effect of causing herx as it decays, it also has a modulatory effect on the immune system. and by not changing the dose enough the immune system has in some cases seemed to have stopped responding to that modulatory effect when there has not been enough change in dosing.. the effect of an immune system run that is not being modified can creep up on you. I am definitely keeping an eye out for that effect and know my doc will make an adjustment if that happens!
Fri, 1/13/06, Day 58 Beni, Day 40 Full MP, Mino – none
Started Beni crushed 20mg q5.25h and q8h for sleep. This is 20mg at 12pm, 5:15pm, 10:30pm, and 40mg at 3:45am (have to take my sleep med's 2nd dose then and never know when I'll wake up). Equals 100mg/day. I'm trying this because Beni doesn't seem to have a strong palliative effect on me, the way it does for many others. I don't notice anything when I go a few hours beyond a dose. So, if I can still herx and cut back a bit, that'll be ideal - monetarily speaking, that is!
Sleep: Sleep by 2:15. Woke up 9:30, then slept again until 11 and woke up to lawn mower!! Slept really well last night! Normal dreams that I don’t remember, only remember one wake-up, other than for my meds! The last time I slept solidly was a night in 97. I felt like I’d just gone to sleep when I woke up, but 8 hours had blissfully gone by. It was such an amazing feeling and something I really look forward to happening again as I heal.
Sx: Lighter than yesterday. Sore back muscles from neck to lower back, strange pain/feeling from center back through to center chest. Ribs sore on the sides (up and down), and hurts underneath front lower ribs. Some heart skips and more rapid beats. Throat lymph nodes and salivary glands swollen (medium). Cotton-filled head, light and constant tinnitus, legs tired and sore (as if I hiked uphill yesterday), shooting pains in R knee, both knees have burning/ant bites sensations. Head feels under pressure and hot, hands tingly, ant bite sensations in palms.
Thought I had a new herx to report that I’d never read about. My right thumb looked horrible, like I’d slammed it in the door, and two fingers look bruised. Pressed on the areas, but they didn’t hurt. Thought it was all very strange. While washing dishes though, I noticed the coloration disappearing. Turned the light up high - it was nicely smeared ink from a leaking pen I’d used earlier! Man, these low lights can play tricks, eh? Well that, and a slow brain. Still, these days, I’ll continue keeping the lights low when looking in the mirror – don’t need THAT much clarity. 
Mental Energy: 75% with bursts of 80%! Better than yesterday, in that I’ve accomplished a number of tasks, including brining a chicken and remembering to roast it before eating it, paid some bills , finally opened up pile of mail (ugh!). And no, I didn’t do the form filling I should have done months ago, but will see what happens over the weekend.
Phys Energy: 75-80%
Mood: Good! Not even remotely reactive!!! And I was tested too!
Last edited on Sat Jan 14th, 2006 20:39 by Alayne
____________________
CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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jillian
Member in Phase 2
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Posted: Sun Jan 15th, 2006 04:30 |
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Hey Alayne,
You may wanna try a necklace magnifier (like this: http://tinyurl.com/d494l 
'til later,
Jillian from North Dakota
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PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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Alayne
Member in Phase 3
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Posted: Sun Jan 15th, 2006 18:28 |
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Jillian, what a GREAT tip! Well, I'm actually not good with long necklaces (either hit myself or others with them or they catch on things, causing no small degree of panic). But just looked magnifiers up on Ebay, and to ward off potential injuries, think I'll get a small one I can stick in my pocket and purse.
Perhaps the MP will cure my klutziness as well?
Sat, 1/14/06, Day 59 Beni, Day 41 Full MP.
Beni 20mg crushed q5.25h, 40mg q8h for sleep. Mino 37.5mg – day 3 none
Sleep: Sleep by 2:20. Woke up 9. Yeah, I’m whining…wanted another night like last night, but not to be.) Many dreams until I woke up for meds at 4:15, then a bunch of wake-ups. My body temp regulation was all over the place as well. All day yesterday, I wore double fleece as usual, because like so many others here, I get really cold, no matter the temp. But when I went to bed, I was suddenly warm! Had to take 3 out of 4 covers off the bed and took off the fleece. Woke up drenched a couple of times, but wasn’t chilled, like I normally am. Then, still too warm, I had to take the final blanket off! A couple of hours later, I started cooling down and needed the quilt, but not the others. Upon getting up, I was immediately chilled and now sit here typing with 2 fleece layers and freezing hands/feet. Well, actually only typing with the fingers.
Sx: AM – early evening - Cotton-filled head, headache, upper back/lower neck pain – both muscles and crackly bones. R knee pangs. Arms and legs tired.
Cardiac – intermittent heart skips/jumps and stronger, rapid beats. The cardiac herxing started up in the past few days and doesn’t bother me. I did get a full cardiac work-up in November and no abnormalities were found. The skips/jumps were deemed benign and due to my then hyperthyroid state. However, I’ve had them off and on for years, so know there’s been/is some bacterial activity in the area and am only too glad to get rid of it!
New: Waxing and waning jaw joint pains. Yesterday, I thought I’d chewed my food too hard, but today realized it’s a herx. Some pain starting throughout upper teeth…it’s quite distant though, as if testing the waters for a later die-off. (I keep waiting for my mouth to really herx because of all my past dental woes.) Slowed around 4:30.
New: Had my first bout of mild vertigo around 12:30. Reached up for some tea and the room started to sway. Since then, feel weirdly off center, like standing on a slowly rocking ship. Sense of balance is off when I walk…dizzy. I love it when my head herxes, as that’s the part I want cleared out as soon as possible. The main off-balanced feeling ended around 4:30.
6 - Ant bites on soles of feet, light tinnitus
7:30 – Familiar rib/sternum/solar plexus/upper abdomen pains
Mental Energy: 65-75%? Back and forth. Dyslexic spelling while typing. Couldn’t stay focused on anything for long, including reading.
Phys Energy: 70%
Mood: Good, didn’t talk much, little stimulation.
Just noticed another mistake - no, I didn't take mino on 1/6 and 1/7. Just on 1/7. Wish I could go back and change some things...but, as in real life, that ain't meant to be! Anyhow, I'm getting a good 3 days of herxing out of this dose. The next one will be my 5th at this level and I'll keep at it until the herxing dies down.
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Jan 15th, 2006 18:34 |
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Yes, klutziness disappears as well, eventually. I think the technical terminology is "improved coordination"
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jillian
Member in Phase 2
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Posted: Mon Jan 16th, 2006 04:13 |
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My nickname in high school was Grace.... and not because I was graceful!
Funny, once I entered the working world I wasn't so 'un'-graceful. Now I know it was due to less sunlight exposure!
'til later,
Jillian from North Dakota
____________________
PulSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-Oct08. P2 Nov08-Apr09. Temporary MP break May09-Dec09.
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Alayne
Member in Phase 3
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Posted: Mon Jan 16th, 2006 19:45 |
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Oh Jillian/Grace I wish I could say I'm less klutzy since avoiding sunlight...but alas, that isn't yet the case.
After a few days of knowing me, my guy wouldn’t allow me near the kitchen drawer with the knives – for about a year. Now he just scoots out of the kitchen when I open it. I told him that I rarely really hurt myself, and he said I just have a higher pain threshold than most. Years ago I came into my office one morning, sat down and noticed something different - I wasn’t in pain! My assistant had bubble-wrapped all the edges of my desk because she was tired of watching me turn white each time I sat down and cracked my knees. I used to have cycles of dark bruises on my legs and arms from regularly hitting various furniture pieces and other permanently placed things. I’ve only now realized that these cycles of lack of coordination might have been/are due to the bacteria.
So glad to hear it’ll probably change for the better, Dr. Marshall! My guy just laughs, though…guess he’ll need to see it to believe it.
Cheers! Alayne
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CFS/ME/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, 10/09-No ABX, NonMP Meds: Calc&Mag/Lysine
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