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| Author | Post |
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BARNEY
Moderator
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Posted: Fri Jul 3rd, 2009 01:08 |
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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
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1709 |
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Posted: Sat Jul 11th, 2009 06:15 |
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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.
____________________
Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1709 |
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Posted: Wed Jul 22nd, 2009 02:16 |
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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.
____________________
Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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thelymelight
Member in Phase 1
| Joined: | Fri Nov 4th, 2005 |
| Location: | Ontario Canada |
| Posts: | 186 |
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Posted: Wed Jul 22nd, 2009 03:02 |
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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
____________________
Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Olmesartan/Feb08; Ph1/Feb09. Low lux-some areas of home. MEDS: Thyroid 7.5mg, Cipralex 10mg, weaned Hydrocortisone. Cal/Mag 150mg each.
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BARNEY
Moderator
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Posted: Wed Jul 22nd, 2009 03:12 |
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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
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
|
Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1709 |
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Posted: Thu Jul 30th, 2009 11:42 |
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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.
____________________
Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
|
Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1709 |
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Posted: Mon Aug 10th, 2009 15:39 |
|
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.
____________________
Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
|
Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1709 |
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Posted: Wed Aug 19th, 2009 15:06 |
|
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
____________________
Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
|
Joyful
Board Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | Restville, Again |
| Posts: | 1709 |
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Offline
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Posted: Fri Aug 28th, 2009 19:20 |
|
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.
____________________
Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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marion villa
Member in Phase 3
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Posted: Fri Aug 28th, 2009 19:44 |
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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
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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Joyful
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Posted: Sat Aug 29th, 2009 07:58 |
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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.
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Deedee
Member in Phase 2
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Posted: Sat Aug 29th, 2009 20:33 |
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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.
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Sarc in lymph nodes. D15. Modified Ph II; Mino/Clindy; Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Began MP 8/08
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marion villa
Member in Phase 3
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Posted: Tue Sep 1st, 2009 04:01 |
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go go girls!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
you are really wonderful
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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thelymelight
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Posted: Tue Sep 1st, 2009 23:10 |
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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? 
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Olmesartan/Feb08; Ph1/Feb09. Low lux-some areas of home. MEDS: Thyroid 7.5mg, Cipralex 10mg, weaned Hydrocortisone. Cal/Mag 150mg each.
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Joyful
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Posted: Tue Sep 8th, 2009 10:41 |
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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
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Joyful
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Posted: Tue Sep 8th, 2009 10:44 |
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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
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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..
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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)
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• 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.
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Plan: stay the course on Benicar only.
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Some things to Celebrate
• Friends who still like you--even when you don't go out much these days.
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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Limburg
Member in Phase 2
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Posted: Tue Sep 8th, 2009 11:05 |
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Hi Joyful,
Your body is working hard to get well.
Annemarie
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MS,DX 1997,Auto-immune hepatitis,DX 2008, MP start jan.2009. 25D: 20.4 (october 7,2009)
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Joyful
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Posted: Fri Sep 11th, 2009 10:02 |
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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*
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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thelymelight
Member in Phase 1
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Posted: Fri Sep 11th, 2009 17:58 |
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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.
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Olmesartan/Feb08; Ph1/Feb09. Low lux-some areas of home. MEDS: Thyroid 7.5mg, Cipralex 10mg, weaned Hydrocortisone. Cal/Mag 150mg each.
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Joyful
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Posted: Sun Sep 20th, 2009 13:08 |
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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
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Lyme?1980 Lyme/Babs/Bart?05 CFS?06 | Start 125D(50) 25D(32) Jun07 | Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | Latest 25D(9) Apr09 | ABC of MP
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