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jcwat101
Research Professional
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Posted: Fri Dec 10th, 2004 11:35 |
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Good Progress--CFS/Lyme/FM 18 years
Link to Thoughts on Coping with Mood Effects of Immunopathology Reactions by J Waterhouse
Summary
http://marshallprotocol.com/forum19/973.html --was link for Benicar initial posts.
See those posts for how extremely sick I was for several years during part of of my illness (>95% bedridden) and how I improved through food allergy reduction, and then later guaifenesin and a low carbohydrate diet (I may have forgotten to mention the low carb. aspect before). One can read more on this at the web site below my signature line.
Then I have also had a couple years of oral Lyme antibiotics, including some months of Mino and Zithromax. Although I didn’t improve much from the antibiotics that I could tell, I think they have reduced my bacterial load some, as I did have some fairly significant Herxing when I began them, particularly in my hands and arms (these areas being somewhat less affected now by Herxes). So, the point is that I am starting from a much better place than I once was at, and that might have made a difference for my toleration of Herxing.
Summarizing the Benicar part, I seem to have been helped significantly by the lowering of vitamin D and the Benicar. Most symptoms have improved some and I have more energy and can do more. I did need to raise my Klonopin for sleep from about 0.2 mg to 0.4 mg, which is still a very small dose. My way of using it keeps it to the minimum level, as my philosophy is to be against most medications unless they are really necessary and kept to the minimum or they help treat the underlying cause (see link for more on it and a new study linking benzodiazepine effectiveness to inflammation:
Summarizing the first 47 days on minocycline, I would say I have been making good progress. I’ve been having enough distinctive Herx symptoms to know that it is working. The Herx strength seems to correlate rougly with dose--with more symptoms at higher doses. I would say that my symptoms are strongest during the period starting 2 hours after taking the Mino and tapering off about 30-32 hours after the dose. So, I would say the Herx symptoms continue strong during the first part of the period of declining dose. However, the symptoms are much less when it is still present in my blood stream, but declining to the lowest levels, around 30-48 hours after the dose.
So, I’m getting enough symptoms to feel I am making progress, but not enough to slow me down too much or make me need to take pain medicine (though I am certainly more tired and less comfortable during the peaks of the responses). I feel for me, this relatively slow pace of dose increases is working well. My worst Herxes have only reduced my activity by about 20%, which is O.K. in my situation, where I can rest when I need to.
To put the daily record in context, I have a certain constant level of fatigue, general achiness, cognitive effects, muscle tension etc... and am far from well, only at what I would call 40% of capacity. In this record, I just note the increases in symptoms as compared to my best days. Between doses of Mino, I especially am able to tell I have made progress. It is interesting, too, how good my mood can be at times, when having a new symptom, because despite the discomfort, I am encouraged, since I know the treatment is working since it is causing a Herx. I think of it like the pain a healthy person has after intense physical workouts, or going hiking or skiing etc... One often can view it in a positive way as a sort of “badge of honor” or sign of increasing strength or healthy. If one did not have the pain on the day after the workout, one would know they hadn’t done enough and wouldn’t progress as much.
One more part of my rather lengthy preamble is that for over 14 years, I have been keeping very careful records of symptoms and treatments and used my records to test every hypothesis I could think of to understand my constantly fluctuating complex symptoms to figure out how to improve. After the first couple years of record-keeping, I decided a notebook was far too hard to use to look for patterns. So, in addition to daily notebook entries, I added a piece of graph paper, with one page covering about a month and a half to help summarize things. I used this in addition to my daily notebook records to record a number to rate a symptom or note a supplement or drug, so that each column summarized 1 day. This made it far easier for me to go back over periods of months to look for patterns.
Anyway, this record-keeping, combined with information from many sources (like the pulse test for food/supplements/chemical sensitivities, taking my temperature, and observations on the cloudiness of my urine, indicating phosphate excretion from guaifenesin) helped me to finally be able to figure out the sources of my symptom fluctuations most of the time. Also, keeping my diet and supplements constant most of the time helped out too (I still keep them quite constant and thus remove diet as a variable to a large degree).
So, in giving my records of my response to the MP, I thought I would report the symptoms like everyone else, but try to add my best assessment of the cause of the symptom based on my experience, for my own information and for others who might be interested. And then I will add, now and then, the patterns I see or suspect, if any occur, either in this thread or the Skeptics corner.
So, if I believe a group of symptoms are related to an allergy reaction, I will follow the symptoms with an A; if related to a minocycline die-off reaction, I’ll use M; if the symptom is similar to what I experienced through phosphate excretion and correlates to increased cloudiness in the urine, I will use a P ) . If I think it a combination of more than one factor, I will use more than one letter. For those not interested in these, they can ignore these letters. I will save most discussion of these things for the Skeptics corner, since they are not part of the Marshall Protocol, but just experimental observations of my own, which I hope might possibly be helpful to others in the future.
I began the Mino. at the time when it was felt that some with CFS and Lyme were more sensitive and many were starting at very low doses (I have been very compliant as far as Vitamin D, sun, NoIR’s, except on one occasion which I will mention when I wasn’t on Mino for a few days for a conference).
Day 1, 10/25/04 3 mg Mino. took at 10 a.m.
At 5 p.m., more tired, then at 7 p.m. suddenly felt rather woozy and lightheaded, pains in thumbs ands hands, worse when I used them, felt very tired and drained, mildly depressed,
that night didn’t sleep well, about 5.5 hours, waking too early mostly M, some P
Day 2, pains or slight stiffness in joints of fingers, pains in upper back, teeth, groin/inguinal region, mild cramps in foot, almost dropped something suddenly, near elbow, calf, spasms travelling down eg to cause a cramp in left foot, didn’t sleep very well, mostly M, some P
Day 3, didn’t take next Mino dose, had diarrhea M, A
very bad limp from muscle contractions in buttocks and thighs, area between shoulder blades feel sore, P
some pains, arm, inguinal, tired, slightly irritable, P, M,
(delayed next dose Mino, since expecting period)
Day 4, Th., no Mino, bad limp, P, A
Day 5, no Mino, moderate limp, P, A
Day 6, no mino, (menstrual cycle, day 1), bad limp, P
Day 7, 1.5 mg Mino at 10 a.m., lowered dose due to being still on period and not wanting to rush things,
bad limp, P, M
2 p.m. and more by 7 p.m., some mild pains and twinges began, hands, neck, inguinal/groin/pelvic region, M
Day 8, no Mino, slept poorly, woke too early, mild diarrhea, thirsty, felt more fatigued, M, A
very bad limp, elbows tingly, buttucks and thighs tendency to muscle contractions, P, M
mild, but increased pain, stiffness and weakness in hands, mild knee pain, some weakness in arms and legs too, less steady, a little light headed, pain left shoulder, M
Day 9, before Mino dose, only very slight hand pains, so most of reaction gone
9:20 1.5 mg Mino.
8-12 a.m. very bad limp, P
4 p.m. no limp, hand pains began, 7 p.m. uncomfortable sitting much due to twinges and tingly feeling of circulation being cut off in muscles of pelvic region and seat, mild wrist pain especially when use them, more emotional tendency, M
Day 10, bad limp, P
similar pains as before on Day 8, 24 hours after first 1.5 mg dose, but somewhat less, M
Day 11, no pains before 3rd dose of 1.5 mg Mino.
upper back soreness, P, M
later, knees, teeth, fingers, underarm , hands mild pains, M
Day 12, (day 12 of menstrual cycle)
no mino day, tried experiment of taking Benicar every 4 hours instead of every 6, seemed to increase limp to very bad, suggesting to me that by lowering the 1,25 D more, it may have enhanced phosphate excretion
still reacting, fingers, buttocks, knees, teeth, all mild pains, M
Day 13, before mino dose, most of previous day’s pains gone, only one finger joint tender,
9:35 a.m. raised dose of Mino back up to 3 mg, since last 1.5 mg reaction had lessened quite a bit,
11 a.m. slight spasm tenedncy in upper back of thigh when walked, hip and inguinal/hip/groin area feel a little stiff, a variety of pains similar to before, M
Day 14, still effects from 3 mg yesterday, slightly off balance at times, various twinges, inner calf tender,mild pains, feel weaker and less steady when walking, like the Herx effect on inguinal and hip regions is affecting my walk, seems different than I can recall ever having before, M
moderate limp, M, P
Day 15, mostly normal again, before dose of 3 mg Mino at 10 a.m.
evening, a little hand pain, M
Day 16, continuing reaction from 3 mg Mino, twinges in hips, inguinal area, while sitting, similar affect on walk as on Day 14, but less
Day 17, accidentally took 9 mg Mino at 10 a.m. (had meant to move to 6 mg Mino),
by late afternoon, feeling more tired and slightly woozy, outer knee and inguinal areas weaker, finger pains, more brain fog and irritability, some other mild pains, M
Day 18, continued reaction to 9 mg (day 12 of menstrual cycle)
biggest reaction so far in terms of pains, brain function and fatigue worse , and weak feeling, needing to rest when pain flared, though sleep and diarrhea less than from first dose (3 mg)
especially high tension in inguinal tendon and other areas in pelvic region, seems to feel like circulation being cut off when sitting and even some degree when lying down, same other pains, limp different than usual, more like its from the inguinal region, unsteadiness, new brief pain in temporal and jaw region, rib cage, arms etc...
interesting that these are areas that past pre-MP herxes have not affected much, M
indications from urine that P excretion has stopped in that there is no cloudiness (this has happened twice before pre-MP when had the largest herxes, involving Zithromax and Mino), same on Day 19
Day 19, continued reaction to 9 mg, didn’t take more, reaction lasting longer than from previous doses,
finger and hand pains, sore between shoulder blades, left hip, some limp but feels like from a stiffness in hips and inguinal region rather than from the gluteal and thigh muscles as when not from Mino, M
Day 20, continued reaction to 9 mg, some upper back, finger, inguinal/groin/pelvic area pain M
urine cloudiness back to more usual level of phosphate excretion, P
Because of plans to go to ACAM meeting, I decided to back off a few days so took less Mino:
Day 21, only 3 mg Mino, and tried a repeat of my experiment with Benicar every 4 hours to see what effect, last time it seemed to increase the phosphate excretion and accompanying symptoms, this time, it might have done a little, but not as much, perhaps less effect due to nearing ovulation (day 15 of menstrual cycle) when 1,25 D might be higher and thus phosphate excretion lower,
achey overall when first arose, A
moderate limp throughout most of day, P
some finger and hand pains, especially later in day, M
Day 22, no Mino, continued reaction to dose from yesterday, but not too big a reaction,
some slight thigh, calf, upper back, brief foot pains, M
Day 23, no Mino, finger pains, M
,inner calf, rib cage, M, P
moderate limp, P
Day 24, no Mino
heavy head feeling, moderate limp, knee, P
slight finger pains, M
Day 25, no Mino
elbows tingly, moderate limp, P
buttocks, thigh pains, P, M
fingers, M
Day 26 and 27, no Mino, at conference, some light exposure since didn’t wear NoIRs indoors, a little light in car, but did best to protect myself, face exposed to cloudy sky inside car for maybe 20 minutes in 2 days, didn’t notice sun effect, see below, didn’t notice much pains in hands or elsewhere, but very preoccupied and besides not on Mino. Still on Benicar every 6 hours
Day 28, no Mino while resting up from trip
slight finger pain, slight diarrhea (had to eat some allergens on trip), A, M?
Did not detect any negative effect from the amount of sun exposure either during or after conference, but was not on Mino. so that may have helped and everyone is different. Also, hard to tell sun exposure effects from effects of greater physical exertion and food allergy--which seemed to produce the expected amount of reaction and fatigue based on past experiences before the MP,
moderate limp, P
Day 29, 12.5 mg Mino, highest dose so far, began noticing Herx symptoms sooner than previous times,
11:45 a.m. inguinal tendon/pelvic tension affected walk, less steady, elbows, arms, finger pains, more tired, woozy, hands feel weaker, able to continue at computer but my mind working more slowly, feeling spacier, momentary dizzy sensation while sitting, hips feel weaker and slightly stiff when I walk, M
bad lim, contraction of muscles and mild pains in thighs and gluteal muscles, P, M
Day 30 (11/23/04, day 26 of menstrual cycle), continuing 12. 5 mg Mino reaction most pains similar to yesterday, mind still slower, slight diarrhea, M
new pains in teeth and gums, mostly left side, worse after flossing teeth, more sore than I can remember them ever being, but still tolerable, also extends to left side of face, jaw and temple region, hip pain, M
very bad limp, P, M
by evening teeth and face pain much less and no more limp
Day 31 of Mino, second dose of 12.5 mg at 10 a.m., before dose not much pain lingering from last dose,
12 noon, bad limp, P, M
hand pains, spacier, M
Day 32, continued reaction to 12.5 mg dose, tendency for seat to go numb when I sit more than 30 minutes, hand, elbow pains, inguinal/pelvic, teeth and gum pain again mainly left sid, but not as bad as after first dose, mainly when chew, M
very bad limp, P, M
went to to Thanksgiving, usually would have not talked much and laid down in bedroom half the time, but this time, didn’t need to rest and talked a lot, I think this recent improvement probably due to the MP as a whole.
Day 33, little if any pain before 3rd dose of 12.5 mg at 10 a.m., hands, elbows, pectoral muscles, hip, foot all became somewhat painful in afternoon, more tired, slightly woozy at computer, stopped earlier, teeth sore when brush, M
2 p.m. very bad limp, P, M
Day 34, continuation of symptoms from yesterday after 2 p.m., but teeth pain gone by 4 p.m., overall less pain and teeth pain gone earlier, M
Day 35, skipped Mino, since expecting period to begin soon,
moderate limp, heavy head “weird” or spacey feeling, left thigh pain, achey tendency, maybe related to hormonal changes prior to period, and P, A, M?
Day 36, also skipped Mino.
heavy head feeling,elbows, shin pain, P
fingers, hands, slight teeth sensitivity, M?, A?
Day 37, also skipped Mino, menstrual cramps (day 1 of menstrual cycle)
slight heavy head feeling, brief period of bad limp, thigh and hip pain, shin pain, P
hand pain, M, A?
slight diarrhea due to period, A
Day 38, resumed 12.5 mg Mino, slight diarrhea, A
evening began left teeth and jaw pain, inguinal pain, mental fatigue, M
very bad limp, P, M
Day 39, continuing Mino reaction, teeth, gums and left side of face sore but slightly less than last time, teeth on right side slightly sore also, thigh pain, hands feel weaker and less coordinated, M
early morning bad limp and heavy head feeling, gone later in day, P
Day 40, another 12.5 mg Mino, only slight hand pain before dose and slight rib cage pain,
slight inguinal/pelvic tension makes walking slightly more unsteady, slight hand and thigh pain, M
Day 41, not much pain today, slight hand pain, no significant teeth pain, ready to increase dose, M
later in day, bad limp, P
Day 42, increased to 19 mg Mino., took dose at 1:30 p.m., by 2:45 p.m., some teeth and face pain on left side, increasing for next 2-3 hours, left shoulder pains began around 3:30 and then left side, arm , hand, hip, thighs, buttocks all slightly sore and caused me to limp badly by 5:30 p.m., mostly M, limp partly P
Day 43, continuing 19 mg reaction, left side teeth and side of face, head and neck still, but less and decreasing throughout the day, inguinal/hip, thigh pains, but all fairly mild, M
moderate limp, later very bad limp, heavy head feeling, left elbow, calf, P, M
Day 44, didn’t sleep as well, slight diarrhea, A
some brief slight foot pains, slight right calf pain,
10:30 a.m. bad limp, P
10:40 25 mg Mino, decided since 19 mg reaction was not too bad, I would go up to 25 mg. today
12:50 within 4-8 hours, some teeth pain, shoulder, hand, foot, increase inguinal/groin/pelvic tension, feel more stressed as I usually do when this tension increased, also tends to cause “tingly tension/fatigue” sensation, M
continued bad limp, P, M
Day 45, continuing reaction to 25 mg, similar reaction continuing same as yesterday afternoon, a little stronger than after the 19 mg, teeth pain a little stronger and lasting longer than on the 19 mg. (but milder than initial reactions 2 or 3 weeks ago, may be finishing up there), today more pains on rt side, hip, hand neck,, thigh, leg, M
limp began moderate, later worsened to very bad, P, M
Day 46, family member sick with a stomach virus, I decide to be cautious and wait an extra day for next Mino. dose, teeth pain gone, all pains less, less fatigue, a little right side pain, near spasm right gluteal muscle once or twice, moderate to bad limp, off balance once or twice, P, M
Day 47 (Friday, Dec. 10, day 11 of Menstrual cycle, began Benicar 10/11/04 and Mino on 10/25/04), haven’t caught the stomach virus so far, so plan to take another 25 mg today.
I will try not to wait so long next time before I update, but I was trying to finish the newsletter.
Joyce
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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jcwat101
Research Professional
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Posted: Tue Jan 18th, 2005 16:21 |
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Second Full Protocol Progress Report
Recapping: Overview of this Progress Report:
Began Minocin (brand name) on Oct. 25, 2004 after 2 weeks on Benicar q6h (began 10/11/04)
Since this post covers a lot, some may just prefer to read this overview at the beginning and skip the detailed day by day account that follows. Sorry it’s so long.
I am improved in energy and sleep and mental clarity since before I began the vitamin D reduction and Benicar and Minocin. I see a lot of difference depending on whether I have recently taken Mino. When I haven’t taken it in a while, I feel almost normal sometimes for a brief time, though still don’t have enough energy to live a normal life in terms of level of activity, and my mind is still quite a ways from full capacity and mental energy. Overall, I am quite happy with my progress and how well my responses correspond to what the Marshall Protocol proposes should happen (however, see my previous reports on the other things that have helped me and may have made the protocol easier for me, though they are not part of the protocol).
Something else that I find very encouraging is the pattern of symptoms and the way this pattern has changed as I progress. At a certain point, with the higher doses, the hand symptoms became much less noticeable, thus perhaps indicating that I have mostly cleared out susceptible bacteria in my hands.
Now, I seem to be getting the biggest Herx symptoms in an area that never had much Herx symptoms before, but has been a troublesome area for me. This is the pelvic/inguinal/groin region including a lot of the pelvic floor muscles, the thigh adductors (muscles used to pull the thigh toward the center of the body), and the iliopsoas region.
I learned the muscle names and functions when I read the Trigger Point Manuals by Travell et al (you can get these two books from Recording for the Blind and Dyslexic, http://www.rfbd.org , if you qualify). The Trigger Point Therapy Workbook by Clair Davies also shows the muscles and how to reduce pain and discomfort in them (I have found deep abdominal breathing and a visualization/relaxation method also helps (see http://marshallprotocol.com/forum33/1365.html ) . The iliopsoas muscles are extremely important for things like sit ups, sitting, standing, walking etc..., as they are part of the structural support system. The inguinal tendons connect the part of the pelvic bone that protrudes in the front on either side, with the pubic bone and has been especially tense during menstruation.
Anyway, I have found tension in the above muscles to be one of the biggest limiting factors in how active I can be without becoming uncomfortable or too fatigued. So, I am very glad the Mino is getting to these muscles. They are also the muscles that get extremely tense when I have diarrhea, which has been a frequent symptom for many years and relates closely to my food allergy/sensitivity reactions). I also have had some knee pains (not really the joint itself, but near the joint), and this is an area that antibiotics prior to the MP did not seem to be reaching much, judging from past Herxes.
I am also encouraged that the disruption to my sleep, reduced mental abilities, and fatigue resulting from increased doses of Minocin have lessened quite a bit and recently I have been progressing more rapidly toward 100 mg. It may be that because I spent extra time at the lower doses, I have been able to go more rapidly at these higher doses. But I should mention that I believe that my food allergy reduction (not part of MP) has still been quite important for this. This is illustrated by the few times I have had food/allergy sensitivity reaction and the resulting worse sleep and other symptoms, even when I reduced my Minocin for a few days.
Another observation I have made is that it does seem that crushing the Benicar in a pill crusher has given me more bang for my buck (I have to pay for it out-of-pocket). I am now using 120 mg crushed Benicar instead of 160 mg uncrushed and seem to get a similar level of effect, due to my absorbing the crushed Benicar better (I have previously observed this phenomenon with doxycycline and Zithromax).
Overall, in terms of timing, I have been having a pretty similar pattern of responses as in the last report, with symptoms beginning about an hour after I take a dose and staying pretty strong for the next 30-36 hours, usually resolving by 42-48 hours. Although for the first 7-10 days with the increase in dose to 37.5 mg minocycline, I noticed that the symptoms were not resolving completely by 48 hours, especially after the higher doses were taken closer together (e.g., every 2 days rather than every 3 days). This makes sense to me, if I’m correct in my way of viewing this, because the higher doses result in a significant amount of mino. being in my system for a longer period of time (i.e., by taking at a higher dose, it takes longer to decay to 0 when it would presumably stop damaging bacteria and thus the reaction could last into the third day more easily).
At some point in these records, I begin rating my limp as going from 0 (bad), 1 (slight), 2 (bad), 3 (very bad), 4 (very very bad), so on to 5 and 6. And the first number will be for when I first start walking and the second number for how bad it is after walking about 50-60 paces. So, limp 1 to 4, means it went from slight to very bad after walking 50 paces. The reason I am going into this extra detail relates to phosphate excretion, and is not part of the MP, and so I will include more on this in the skeptics corner later, for those who are interested. I will also include more on what I am observing relating to allergies in the skeptics corner and will provide links in my next progress report.
I am redoing my signature line a bit. I also want to clarify that sometimes I use different numbers of years to describe how long I have been ill, since during the first 5 years it was a gradual decline, and it varies as to when I decide to consider myself really ill. The beginning of my decline was in 1981, and then I gradually declined while I finished my degree and became really disabled around 1987. But to simplify and match my progress report title, I’ll just change it to 18 years in my signature line.
Day by Day Records: Days 47 through 85
Day 47 (Friday, Dec. 10, day 11 of Menstrual cycle, began Benicar 10/11/04 and Mino on 10/25/04), haven’t caught the stomach virus that a family member had so far (apparently the prevention strategy I am using, which is not part of the Marshall Protocol, is still working see : http://marshallprotocol.com/forum31/1463.html ), so plan to take another 25 mg today (second dose of 25, but had waited 3 days instead of two because of strong reaction to first dose).
before Mino. dose, slight heavy head feeling, and slight limp, left elbow, slight inner knee area pain, P slight hand pain before Mino. dose
Mino. dose at 10 a.m. , knees, hips, sore tendency, weaker and less steady, by 3:00 p.m., more knee weakness than I ever recall having before, especially right knee and hip and a very bad limp, mostly M, some P, might be a problem if I couldn’t rest when I need to or if I had to walk much, some sharper finger pains, elbows tingly, no teeth pain this time, inguinal and inner thigh tension
Day 48, continuing reaction to 25 mg of Mino. dreams more negative, slight tendency to cramping in calves if I moved in the wrong way, M
in morning, surprised that the Herx was a lot less than previous day, limp, 0-1, slight, brief abdominal migraine tendency if I rest too long (used to have migraines, now have similar symptoms at times, but much milder, with very little if any headache), A
in late afternoon, Herx picked up again, knee, thigh, inguinal/pelvic, mid-back, elbow, some hand (especially after using hands or flexing them) pains, limp, 5 to 6, abdominal cramps,limp 5 to 6 M, P.
I was somewhat surprised that reaction was not continuing as strong this morning as it did on the previous dose of 25 mg.--but it did pick up more in the afternoon. (the lesser reaction in the morning might relate to my allergy reaction in the morning increasing my 1,25 D, or ovulation having an effect)
afternoon and evening limp much worse , middle of back, thighs etc.. all sore, plus some abdominal cramps and slight nausea, M, and some P and A.
Day 49, 3rd dose of 25 mg. Mino,
before Mino., still moderate pains similar to previous day, after Mino dose at 10:30 a.m. symptoms increased within a few hours similar to yesterday afternoon, plus side of shin sore and left knee maybe worst ever (but still not enough to require pain medicine, since my pains have rarely been that bad).
It's interesting that hand pains were stronger before Mino dose than after (the low dose in body from previous dose still able to penetrate hands easily?).
very bad limp, 5 to 6, M, P
Day 50, continuing reaction to 25 mg. Mino, similar as previous Herxes, but ears feel slightly plugged in morning and slight soreness of left side of face, jaw, temples, teeth and gums again, similar to a couple weeks ago, M
limp, 5 to 6, M, P.
Day 51 of Full Protocol, (day 15 o f menstrual cycle, near ovulation), even though only on 25 mg for a week and still getting significant Herx, I have decided to increase the dose to 38-39 mg Mino, since I feel I could easily tolerate a stronger reaction at this time, and since I spent quite a bit of time at doses below 25 mg, thus probably getting rid of quite a lot of bacteria, since my Herxes were significant at those very low doses (these very low doses are not currently recommended for those starting the MP).
Before dose, still some slight limp and other symptoms, after 10:30 a.m. dose of 38 mg Mino, by an hour later, left side teeth and gums slightly sensitive again, other similar pains, limp, 3 to 4, M, P.
Day 52, continuing reaction to first dose of 38 mg Mino yesterday morning, very similar response, also a slight brief TMJ-type? pain near left temple when opening mouth, M, P.
Day 53, second dose of 38-39 mg Mino at 10:30 a.m., before dose, symptoms mostly gone, similar pains and limps to previous Herxes, not much increase, some symptoms less, like teeth and limp, some more, like upper arms and shoulders, knee pain different--top of knee rather than side, some discomfort from sitting more than 20 minutes (feel like circulation gets cut off), M, P.
Day 54, continuing reaction to dose of Mino., one of worst Herx days in terms of pains, unbalanced, unsteady walk, knee, thumb, head and neck achy, hip, both elbow, slight cough, slightly productive of mucus, groggy in morning, more tired, found I couldn’t type very well (similar to some others who say sometimes their second dose at a particular level gives a stronger reaction, maybe buildup of Mino level), rested more, M, less P effect today.
Day 55, skipped dose, due to Holiday party tomorrow and for a little break, still some teeth , knee, hand, pelvic pains, muscle near base of spine, but still much less and limp, 0 to 1, M, slight A.
Day 56, skipped dose due to Holiday party--can measure my progress today by increased ability to remain active at party, talk to people more, play with niece, and not even go to back bedroom to lie down (in previous years, I might have spent half the time lying down in the back). Much of that change probably due to MP (though food allergy reduction-- not part of MP--probably accounts for some portion of improvement, see http://marshallprotocol.com/forum27/1674.html ).
Day 57 (Mon., Dec. 20, day 21 of menstrual cycle), third dose of 38-39 mg Mino at 10:15 a.m. By 2 p.m., less able to type, later, limp bad, 3 to 4, but not too bad, also tired from sleep being poorer quality after activity increase on previous day.
Day 58, more of usual Herx symptoms from dose yesterday, limp, 4, 5, M, P.
Day 59, felt more energy in morning before dose of fourth 39 mg Mino at 11:50 a.m. after dose, teeth pain began a little over an hour later, some hip discomfort, other usual pains plus upper back soreness, afternoon tired from Herx, limp 3 to 4, M, P.
Day 60, continuing reaction from 4th dose, mind groggier and slower, more tired, less motivated, had a dream involving frustration, usual hip/thigh/pelvic/gluteal symptoms, also occasionally a little light headed, slight TMJ pains, M, P, A.
Day 61 (Dec. 24, day 25 of menstrual cycle), skipped dose for family holiday party, still some reaction from dose Mino 2 days ago, some hand, shoulder, leg, overall achiness, some abdominal migraine tendency, but overall not too bad and did pretty well at family gathering.
Day 62, took 5th dose of 39 mg Mino at 11:15 a.m. some mild pains before dose, more later, usual sorts of pains, but also right elbow and forearm, left hip, bad limp, 3 to 5 by late afternoon.
Day 63, continuing reaction, teeth and hand and other pains, 8:30 a.m. limp already bad , 3 to 4 or 5-- but declined to milder level by 4 p.m. (1 to 4), seems like reaction declining sooner than previously, sign of reaction decreasing at this dose, M, P.
Day 64, starting menstrual period, so skipped dose today, surprised that teeth and jaw pain still significant in the morning despite other Herx symptoms mostly gone, also in late afternoon limp bad, not sure why, but limp seems associated with menstrual cramps, A?
Day 65, 11:45 a.m., 6th dose at 38 mg Mino, before dose, still slight teeth pain, but little else, after dose more teeth pain, some limp, hand, thigh, elbow, stronger teeth pain, still left side of mouth, limp, 1 to 4, feel a little spacier and mind slower, M, P.
Day 66, continuing reaction, worried tendency in dreams, woke feeling drained, calves slightly sore, elbow, brief knee pain, limp 0 to 4, then increased to 3 to 4, M, P.
Day 67, woke with heavy head/weird feeling, groggy, limp 2 to 2, P, but more alert later, slight knee pain, 11:15 a.m., 39-40 mg Mino, 7th dose, a few hours later, mind slower, more inguinal/pelvic pain, knee, thigh, calf, lack of circulation when sitting, slight tendency for calf to spasm, M, P
5:00 and 10 p.m. took Benicar that I had crushed and put in capsule as an experiment to see if would absorb it better , P, M.
Day 68, continuing reaction from 7th dose of Mino and continuing experiment of taking Benicar in a crushed form, at the same dose as before, still at 160 mg/daily, judging from symptoms, I seem to be getting a similar effect to when I took Benicar every 4 hours once before, in that I am getting more symptoms of phosphate excretion and evidence in urine, (see previous progress reports for more on this--not part of Marshall Protocol). This supports my idea that I might absorb it better if crushed, as with previous drugs I have taken (see http://marshallprotocol.com/forum11/1707.html ). But I will do further testing.
Elbow tingly, heavy head, inguinal/pelvic tension, slight knee pain, calves, limp 2 to 4 in morning and 3 to 4 in afternoon, and 2, in evening, M, P.
Day 69, back to Benicar, not crushed, skipped Mino. due to New Year’s Day family gathering, slight upper arm soreness, but not much Mino effect or P effect, once again felt much better and able to do more than last year on New Years.
Day 70, (Jan. 2, Day 7 of menstrual cycle), first dose of 50 mg Mino, decided I could tolerate more Herx, since Herx had been declining at previous dose, though still significant. Continuing with experiment with crushing Benicar, this time took crushed Benicar every 8 hours instead of uncrushed every 6, seems like my usual reaction levels, limp 2 to 4, M, P.
Day 71, staying with 120 mg crushed Benicar now, continuing Mino reaction, similar to usual, more intense than before dose increase, but not as bad as some past Herxes--similar areas, but especially in inguinal tension/pelvic region/upper thigh on left side (near where tension has been greatest when I have diarrhea--not too far from region of sigmoid or lower part of colon, so may be related), slight teeth and gum pain, some pain in toes of left foot , very bad limp, 4 to 5, M, P.
Day 72, continuing reaction, decided to wait an extra day before next Mino. dose, limp, 2 to 3, back of thigh and hip on right side and inguinal/pelvic tension, M, P.
Day 73, Herx. symptoms gone in morning, walked quite a bit and held up pretty well, second dose of 50 mg Mino. at 2:00 p.m., 4:00 p.m. briefly felt rather woozy, as I relaxed, brief cramping, shooting pains in left foot and leg, but eased up over the next hour, pains in thumb joints, inguinal/pelvic region, mild teeth and gum pain on left side of mouth, M, P, mild diarrhea, A
Day 74, dreams more anxious, less restful sleep from Mino., continuing similar symptoms, limp varied from 1 to 3, up to 3 to 5, M, P.
Day 75, woke feeling rather groggy, some feeling of heavy head, P, reduced Mino. to 25 mg because I want to ease up due to going to lecture tomorrow, some pains, elbow, right hip, index finger, limp 3 to 5, left knee, thighs, M, P, rectal pain and bleeding continues for several days, A.
Day 76, went to lecture, some hip pains, thumb pain, limp, 1 to 2, M, P.
Day 77, skipped a day of Mino. due to continued rectal pain, occasional slight hand pain, limp, 1 to 3, M, P.
Day 78, for same reason, only 38 mg Mino., a little spacier, some soreness on left side of face, limp, 2 to 4, inguinal pains, M, P, some heavy head feeling, P
Day 79, similar symptoms as usual lately, limp, 3 to 5,
Day 80, first dose of 62.5 mg Mino at noon, (raising before reaction gone at lower doses, since still quite tolerable reactions), by mid afternoon, mind a little slower, usual mild teeth/gum sensitivity, limp 3 to 4, inguinal/pelvic tension, constant thirst (seems associated with greater inguinal tension?), M, P.
Day 81, (day 18 of menstrual cycle), dreams more active, but sleep not nearly as used to be with first increasing dose, inguinal and psoas tension especially high, also upper thighs, gluteal muscles, pelvic floor muscles etc.., so that have to relax more (very deep abdominal breathing helps stretch and relax these muscles), since if I go past a certain point, I start feeling shaky and weak, left jaw, temple and teeth a little painful, in afternoon, limp very bad, 4 to 6, calf, right ankle and hip pain when walking much, occasionally light headed when I don’t rest often enough, M, P.
Day 82, before Mino., most of Herx gone, slight tooth pain after meal, a second 63 mg Mino at noon, at 1:30 began noticing slightly woozy, mentally fatigued feeling, some buttocks/gluteal and hip pains, inguinal, teeth etc.., plus some slight knee and elbow pain, limp, 1 to 3, M, less P than last few days.
Day 83, same symptoms as yesterday, but less than after first dose of 62.5 mg Mino, able to function pretty close to my usual level, limp, 3 to 4, M, P.
Day 84, most Herx symptoms gone by morning (since only increasing by 12.5 mg, and Herx far from intolerable, with second one milder, decided to increase dose again) to 75 mg. Mino. reaction quite similar to first 62.5 mg, but more near knees and less limp, up to 2 to 4 for a while, M, still less P.
Day 85, continuing reaction, some of usual teeth sensitivity and muscles near knee and hip pain, limp 0 to 2, M, less P.
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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jcwat101
Research Professional
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Posted: Wed Feb 9th, 2005 19:36 |
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Third Full Protocol Progress Report
An overview of my progress is that I am basically continuing on as before, with similar Herxing. Although, I am still Herxing some on 100 mg Mino, it is lessening and is easily tolerable. And since I have been in Phase II well over 3 months, and have been approved to move to phase II, this will be my last Phase I progress report. However, I will probably give an overview now and then in the Phase I section even after I move on, so others can follow my progress, if they are interested. At least to begin with, I plan to be cautious in Phase II and try the newer antibiotic that seems less intense, with only 50 mg minocycline to start with.
I have continued to observe more penetration into the inguinal/hip/groin region that has not been reached much before at lower doses or before the MP. I also believe that the higher doses may be allowing deeper penetration, since I began to get more feeling of a deeper pain in left lower teeth with the higher doses, whereas before, it was often more of a surface irritation of the gums that bothered me. On the whole, though, the pains I describe are fairly mild and don’t require even tylenol, for the most part. Fatigue and brain fog have been my most troublesome symptoms, rather than pain.
Note: See my signature line, my D values when down a lot (now 25D 6 and 1,25 D 22).
(See first post in this thread if you want to know what the P and M are for and see the second post for the way I rate my limp)
Days 86- 107
Day 86, no Mino., very little limp, slight teeth sensitivity,
Day 87, (day 24 of menstrual cycle, very slight breakthrough bleeding--unusual) noon, 2nd dose 75 mg Mino., evening, limp, 1 to 3, teeth, elbow, hand pains, M, P,
Day 88, morning, limp, 3 to 4, some pain along right side, hip and thigh when walking, and some left side, also continuing tendency to rectal pain and bleeding, worsened by food allergies, but maybe partly related to Mino., later limp less, only 1 to 3 and no pain, as Mino. declined in evening, M, P,
Day 89, only took 38 mg Mino, since signs of menstruation coming on, later in day, some knee, hip and slight hand pains, and inguinal/pelvic tension, limp bad for a little while, 4 to 6, mostly P, less M,
Day 90, (day 27 of menstrual cycle) same symptoms, but pretty mild,
Day 91, skipped Mino, menstrual cramps--average intensity for me (day 1 of cycle), brief unusual sharp wrist pain after working at computer, teeth and gums not sore, but slightly sore after flossing, P
Day 92, before Mino, very slight gum soreness, and some limp, 2 to 3, P,
noon, third dose of 75 mg. Mino., later limp, 3 to 4, and slight teeth, hand and foot pains, M, P
Day 93, continued reaction, limp 3 to 5, sleepier in evening, continuing to sleep pretty well for average of 7.5 hours, M, P,
Day 94, although still Herxing on 75 mg, it is hardly affecting my ability to do what I need to do and I’m sleeping well, so feel I can tolerate more Herx, noon: 1st dose of 100 mg Mino. (was taking brand name, now using generic), some teeth pain, rib cage and elbow pain or tingling, tension in inguinal/groin/pelvic region especially high, slightly painful at times (increased feeling of thirst seems to occur and correlate with greater inguinal tension--also used to happen when had diarrhea-associated inguinal tension) , more pains when walking in hips, thighs and knees, knees feel a little weak when walk 50 paces, limp quite bad, 3 to 6, M, P,
Day 95, seems to be one of my bigger Herxes in quite a while today and yesterday, some hand numbness during night and woke up earlier, slightly more clusmsy, mind slower, more tired, temperature very slightly higher, occasionally twinges in arms and elbows, inguinal tension seems to make rectal pain worse at times, occasional shoulder, thigh, buttocks , hand, knee, foot pains, limp very bad, 5 to 6, jaw/teeth pain feels deeper, feel on left side when chew or brush teeth, not gums anymore, which was more a surface irritation, took an extra 20 mg crushed Benicar, but didn’t have noticeable effect, M, P,
Day 96, most of reaction gone before 2nd dose of 100 mg Mino, similar reaction but milder, limp, 3 to 4, M, P,
Day 97, some of same symptoms, but less, limp 1 to 3, M, P,
Day 98, 11:30, 3rd 100 mg dose, similar but milder, also mild left shoulder pain limp, 2 to 3, M, P,
Day 99, similar as before, left index finger pain when writing, still teeth pain deeper, feel it when I brush teeth, like I used to, M, P,
Day 100, went to doctor, took extra 40 crushed Benicar, but think I avoided the sun pretty well, a sign of progress that I was not very fatigued or stressed from going for doctor visit as I used to be, was fairly active most of afternoon after appointment and slept well that night, whereas before I would have had rest all the rest of the day and would have had restless (higher cortisol? sleep), found out vitamin D levels cut by 1/3 to ½, limp 3 to 4, M, P,
Day 101, 4th 100 mg Mino, similar Herx symptoms,
Day 102, limp, 2 to 4, other symptoms milder, with similar fluctuations with dose, but will just put the level of limp (I usually put the maximum level, the limp, however, is not constant all day, often more mid morning to mid afternoon),
Day 103, 5th dose 100 mg, limp 3 to 4,
Day 104, limp 2 to 3,
Day 105, 6th dose 100 mg, limp 2 to 3,
Day 106, limp 4 to 5, but most other pains less,
Day 107, limp 1 to 2, somewhat spacier and less motivated the last few days (suspect food allergy withdrawal reaction, A, and P increase)
end of phase 1
Joyce
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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jcwat101
Research Professional
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Posted: Sat Sep 17th, 2005 20:09 |
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Phase I edited version of my Phase II progress report overviews.
I am about 8 months into Phase II, but decided to start posting edited versions of the overviews of my progress reports and a few of the day by day accounts during this next week. When you get to Phase II, you can read more of the detailed day to day accounts, if you choose. Here is the first installment:
Starting Phase II
For my history, see:
my initial Benicar progress report, also giving some of my history prior to MP http://marshallprotocol.com/forum19/973.html I am taking a few other things that aren't a part of the MP and aren't in my sig line, but you will have to go back to the above link for more on them. They don't seem to be hindering my progress, as far as I can tell, nor can they account for my progress
Overview:
Although I feel I could probably tolerate the usual phase II antibiotic, I felt that I preferred trying the alternate phase II antibiotic first, since my brain fog and fatigue are my worst symptoms, and I never have taken this antibiotic before (whereas prior to the MP I have taken the other Phase II antibiotic).
So, I liked the idea of greater flexibility and possibly getting rid of brain fog symptoms sooner, and perhaps an easier time overall with the Herxing.
I did find I had a slight allergy/sensitivity reaction to the green capsule that the Phase II antibiotic I got comes in, which I detected with the pulse test and a little diarrhea and other symptoms (see web site below my sig line if you want to read about the pulse test). I suppose this is from the tartrazine dye that someone said is probably in the capsule. So, now I am sure to put it in a different capsule.
I will also mention that my new D results are encouraging, as below:
Before the MP, and before I began avoiding light and vitamin D, they were:
Aug. 24, 2004, 1,25 D: 64 pg/ml 25D: 11 ng/ml
After about 3 months of MP:
Jan. 10, 2005, 1,25 D: 22 pg/ml 25D: 6 ng/ml
It was satisfying to see the levels come down like that.
I decided to do the second test at the same time of my menstrual cycle (about day 14-15) as I did the first time I had the test, so as to be more useful for comparison with the first test (as one study indicates that 1,25D may increase near ovulation. I also decided that since I wasn’t Herxing at the time the first test was taken, I should do the second test on a day I wasn’t Herxing much at all. So, I did the second blood draw when it had been about 40 hours since the previous dose of Mino. and it was a dose that wasn’t causing a very strong Herx. I also did the test at the same time of day, in the morning, while fasting.
I was wondering if consideration of these factors in people’s decision on when to redo the tests might make it less likely for them to get a frustrating or unexpected result, particularly with the 1,25 D level?
Of course, it might not always be convenient, but if one has to pay for it out of pocket, it seems like one might like to get a result that one can more easily interpret. Of course, there might also be reasons to want to know what one’s 1,25 D is in the middle of a Herx, when presumably it would be higher.
Well, on to a summary of my day to day account. On the whole I’m getting a fairly strong but quite tolerable and consistent sort of Herx to this Phase II alternate drug with the minocycline. I do find a little light headedness now and then, and some teeth pain, and fatigue, along with deep pelvic/inguinal/psoas effect. It’s interesting that I get a strong and constant thirst when I get a big Herx in the pelvic/inguinal area. I think somehow that is connected with diarrhea and my food sensitivity reactions in the past, when I also used to get an intense constant thirst that was unchanged no matter how much I drank. I have a theory about it that I’ll post some other time, but wonder if others have any thoughts on it (actually I did post something on that in Phase II, later)?
I also think it satisfying that Trevor’s predictions that this combination is going to get different bugs is being supported by my observations, in that I am getting a resurgence of Herx symptoms in areas that had pretty much seemed cleared out of CWD only sensitive to Mino, judging from the waning of the Herx. For instance, the hand pains are coming in a lot stronger again, thus showing that they had only been cleared of bugs sensitive to M. alone, not those that needed both. Same thing goes for a resurgence of teeth and gum pain.
Second Progress Report for Phase II-- edited for Phase I
Day 123- 154, up through Chicago Conference
Overview (I am including a few of my day to day accounts. I will substitute ___ for the first level of the alternate Phase II antibiotic)
Overall, I’d say I’m like many people on Mino. and ___ in that I have had trouble progressing past a certain level of antibiotics, largely because of brain Herx symptoms, like fatigue, spaciness and even some depression and anxiety at times. In fact, at some times, I have reduced the levels of antibiotics after I felt it was too much, or waited 3 days between doses.
I haven’t had as many episodes of lightheadedness as I did initially on the ___ + M, especially as time went on, and the periods of thirst have begun to decline some (and disappeared mostly later). I think these are the only symptoms that have gotten milder so far on the ___ + M. I think I still have a ways to go with this combination. I guess it must be a really effective one for me, and since it is so effective at even low doses, there is no need to hurry to raise the doses.
You can see previous progress reports on my rating of my limp (the higher the number the greater the limp) and my references to allergy/sensitivity reactions etc.. (I label as A) and what they mean, in my own view, if you are interested.
If interested in the pulse test or other things I mention, you could look at the web site in my signature line. And by the way, the pains I mention are mild and I almost never feel the need to take tylenol for them.
I did have a couple of experiences that were rare or unique for me, where my hands or whole arms became numb for a while, without any apparent reason, so this was probably due to Herxing. The days of the Chicago Conference (Days 139-140) and when I took a short vacation, show what progress I have made (Day 153-154).
2/24/05 Day 123 took 6th dose 100 M. and ___, before ABX very little symptoms, 2 or 3 hours later, mind became slower and spacier, some pains or tingly sensations, like elbow, shoulder, left big toe, and limp, 3 to 5, with knee, hip, thigh, inguinal and gluteal muscles tense or slightly painful.
Took Quercitin for the first time today 500 mg x 3.
Day 124, some knee pain, some teeth/jaw/gum sensitivity, limp 3 to 4, thought might have been a little better mentally today than expected from Herx possibly due to Quercitin, which I took twice today,
Day 125, loose stool, didn’t feel as well, realize I had developed a mild sensitivity to the Quercitin, as evidenced by diarrhea and short cut pulse test, showing the pulse raised 2 beats per minute after putting it on my tongue.
11 a.m. took 7th dose 100 M and ___, no limp at time of dose, later limp 1 to 3, some hand pains, hips etc.., slight gum irritation and slight brief lightheaded sensation.,
Day 126, loose stool again, some slight migraine tendency, probably from Quercitin sensitivity reaction, Herx symptoms mixed with Q reaction, left knee pain, limp 0 to 3, feet cold, trouble with focus, negative thinking,
Day 127, heavy head feeling, groggy, slight knee pain, some slight hand pain, limp 3 to 3 (Phosphate excretion?), all before antibiotic dose,
11:00 a.m., 8th dose 100 M and ____, a few hours later, limp 3 to 4, some new top of knee and outer knee sensitivity, abdominal cramping seems to be related to inguinal and iliopsoas/pelvic tension, shoulder, calves, wrist finger, left inguinal region unusually tender to the touch.
Day 128, limp 3 to 4, knee pain, inguinal tension, weak and spacey feeling,
Day 129, before ABX, limp 2 to 2, then 11 a.m., 9th dose 100 M and ___, limp 3 to 4, some increased thirst began after some increased inguinal muscle tension (whereas before was having it all day as a Herx reaction a few weeks ago), soreness of gum mostly in upper left back area, becomes much more sensitive when Herxing.
Day 130 (3/3/05 day 11 of menstrual cycle) , slight ear ringing, and shakey feeling thirst, inguinal tension, upper left gum soreness, limp 3 to 5,
Day 131, still bad limp, 4 to 5 early in morning, pain in right hip and inguinal tension, then 7 a.m. to 11, limp mostly gone, took 10th dose 100 mg Mino and __ by afternoon, thirst, again, limp 3 to 5, slight hand pains, been less overall lately, pains in hips, gluteal muscles, thigh, shoulder, inguinal, elbows and near elbows, gum area sore, eye lid twitching for a while,
Day 132, woke with my hands numb during the night (don’t recall this happening before), other symptoms mostly similar, more soreness of left side of face and also sore spot on right jaw, elbow and arm more painful and tender, gluteal muscles bordering on spasm,
....... Day 153 and Day 154, took a trip, but stayed well covered and used K cream (and sunscreen, the sunscreen use is not part of the MP, but I chose to wear it to not get sun damage and had no problems with using both, but this was 6 months into the protocol, and I covered up pretty well, except face and hands, and was not all that sun sensitive to begin with), and did remarkably well--amazingly, on one day, I probably walked a total of 2 or 3 miles, in several small walks, which is much more than I have done in ages, and I wasn’t even sore afterwards, and recovered quite quickly, I’d call this another success for the MP. It’s harder to see the progress unless you take brief breaks from the antibiotics, so I recommend doing that for the sake of maintaining morale.
Joyce Waterhouse, Ph.D.
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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jcwat101
Research Professional
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Posted: Sun Sep 18th, 2005 17:40 |
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Third Progress Report in Phase II (edited version for Phase I readers)
The following may particularly interest those who have felt the need to stop Benicar for a while, or who have had a lot of trouble with the MP and have thought of stopping for a while. But one should first try the usual options suggested by the staff before anything else. And much of what I am discussing below regarding the pulse test should be considered experimental in the context of the MP.
I’m only showing a representative sample of the day to day accounts.
Overview and General Observations --Days 155-200 (up through 5/12/05)
Noticing less tendency to have anxious or negative dreams as part of ABX Herx. Limp is usually not very significant in the early morning or very late in the day, with occasional exceptions (I usually only note what it is at it’s peak) and this pattern is nothing new. Seems like after 2 or 3 times in which I take __ and M on every other day, the reactions tend to build up some and then it seems like I should extend it to every 3rd day.
One the whole during this time, I feel like the __ and 50 M Herx has really settled into producing more fatigue and depression, especially toward the end of this time period. I also began having rectal bleeding every day I had a bowel movement (and even later in the day) and this was different from the previous few months, when I would only have rectal bleeding every few days, in connection with my food sensitivity reactions.
At the end of this period of time, I decided to take a break from the MP, for a couple reasons. One of these reasons, is that I believed that I may have developed an immune sensitivity to Benicar (similar to my food sensitivities). I know it is a small molecule, but they can join with a large molecule to form a "hapten," which can then provoke a TH1 type or other type of immune sensitivity reaction. I have had this happen with an occasional drug, but more usually to foods and supplements.
About 2 or 3 days after stopping the Benicar, the rectal bleeding stopped and has not recurred in several weeks. I am quite confident that the bleeding wasn’t Herx related, because it never really correlated with Herxing (only with sensitivity reactions). Also, I feel sure it was a sensitivity to the Benicar, because I used the pulse test and found that I had an increased pulse from putting the powdered Benicar on my tongue for just 1 minute and the pulse increased 4 to 5 beats per minute. It was strongest, 9 to 12 hours after my last Benicar, during the withdrawal phase when immune complex deposition is probably occurring (Food Allergy and Intolerance, by Brostoff and Challacombe, see http://members.aol.com/SynergyHN/2004FA.html ). Of course, it could also possibly be due to a reaction to titanium dioxide, since someone said that they have a sensitivity to that and it is in Benicar. After stopping the Benicar, a few weeks, I was able to go back on it just fine, and perhaps could have resumed it sooner, as it is a mild sensitivity that took several months to build up to a level when it began to cause the rectal bleeding.
I want to emphasize that this pulse testing is not a part of the MP and is just something I have studies a long time and have a lot of experience with that I am using to see if it can reveal anything that may turn out to be helpful.
Although I know many may have trouble for reasons such as hormonal adjustment or Herxing, this does not fit my case. I wonder if perhaps this sensitivity phenomenon could explain why in at least some cases, people who are having trouble on the MP seem to do better if they stop it for a while and then restart. In the past, I have used various tests to verify other sensitivities to foods and chemicals (IgG4 RAST tests, ELISA/ACT lymphocyte response assay and intradermal skin testing, which is more accurate than scratch tests). I just find the pulse test most convenient, since it can be done often at home, which can be important, since many of the sensitivities vary depending on how much you are consuming the item.
I would suspect that as time goes on, and as Trevor says, the sensitivity reactions decline due to the MP, this tendency to develop a sensitivity to the Benicar will disappear and perhaps I won’t even need to take a second break from it. But if the sensitivity comes back, I can probably take another break and then resume it again.
Although, after spending years studying these immune sensitivity reactions (which are probably mostly TH1 or other non TH2, non IgE reactions) and feeling quite certain of my experiences, I don’t want to imply that I claim that this is what happens in everyone (perhaps I am even a unique or very rare case), but I just felt it important to share this information, as it may prove useful. It may mean that for those who are having trouble with the MP, after they have tried adjusting the antibiotic and Benicar dosages, if they are still having trouble, we should consider a little sooner, whether a break from the Benicar, in addition to an antibiotic break, is a good idea. Of course, one should first try the options suggested by the staff to deal with problems with Herxing, before considering taking a break from Benicar.
Others can test for themselves if they suspect a sensitivity developing. However, the pulse test is best able to detect reactions during the withdrawal phase (see newest Issue 8 preview for a mechanistic explanation, http://members.aol.com/SynergyHN ). For me, I had not detected an increase in pulse 6 hours after taking the Benicar when I had done a pulse test a couple days before starting it (although I did apply some to my lip on one side and it did seem to cause it to tingle slightly). After doing several control pulse tests to get a baseline, I did get an increase of 4 beats per minute a couple minutes after placing some crushed Benicar on my tongue 9 hours after the last Benicar. And I got an increase of 5 beats per minute 12 hours after the last Benicar. Then the reaction began to decline and I got a +3 increase at 15 hours and then back to 0 at 25 and 33 hours. Experience has told me that I should wait 2 to 4 weeks before resuming an item like this, but perhaps it could be sooner.
By the way, despite taking a lot of minocycline in the past, I have never developed a sensitivity to it, despite my tendency to be a near universal reactor, so that should comfort people and support Trevor in his view that "allergic" reactions (or other sensitivity reactions) are almost always Herxes when it comes to minocycline.
I also would say that I am grateful to Trevor for explaining how these sensitivity reactions are a sort of side effect of the immune dysregulation from microbes, as I am certainly looking forward to the sensitivities disappearing eventually with the MP, and no longer needing to restrict my diet in order to function this well. Unfortunately, I have had to have a very restrictive diet for many years (by the way, I know my symptomatic food reactions are not D or sun related, since most of the foods I react to have no D and my sun/light exposure has been quite constant, plus the short cut pulse test can verify the reaction in a couple minutes, if done during the withdrawal phase).
Joyce Waterhouse, Ph.D.
Here’s the day to day account:
Day 155, got back from trip and took a nap, I can nap more easily during day now, and not feel as bad as I used to after waking up from a nap, which I think is due to the MP, slight diarrhea (probably food sensitivity reaction to a little wine I had a day or two before), spacey and quite tired from trip as did not sleep as well as usual, gums on left side, both top and bottom slightly sore, slight hand pain and a lot of inguinal/pelvic tension,
Day 156, feel pretty good, bounced back from trip much more quickly than would have thought, muscles not sore from extra walking on trip, 11 a.m. 3/8 __ and 50 M. (4th dose at this level), slight abdominal/head migraine, limp increased to 2 to 3,
Day 157, had rather negative frustrating dreams, woke with some mild abdominal cramping, which seems to be due to extra pelvic/inguinal/iliopsoas tension, limp 3 to 4, even early in the morning, ankle sore, groggy, inguinal/pelvic tension, left shouler pain, achey upper back and some elbow tingling,
Day 158, some crampy feeling in abdomen, but milder than yesterday, slight right foot pain, mood pretty good, 11:30 a.m. 3/8 ___ and 50 M., later limp 3 to 5, hand, foot, thumb, inguinal, hip, elbow pains,
Day 159, dreams fairly active, but not as negative or anxious, limp 3 to 4, some thirst developing in morning, pains in arm, hip, near cramp in buttocks/gluteal muscles, lots of inguinal tension, very slight gum sensitivity, slightly depressed tendency later in day, but gone after I rested more and listened to books on tape,
Day 160, decided to see what it would be like to do the antibiotics every third day, so none today, no limp, slight left hand and thumb weakness and pain, slightly more tooth and gum sensitivity, the increase in hand and tooth symptoms suggest the third day of Herx has allowed some increase in Herx in these areas, mood and energy fairly good, slight inner calf sensitivity, some elbow tingling,
Day 161, rectal bleeding, which used to be only every few days or so, and seemed tied to food sensitivity reactions starts to become daily around now, and occur later in the day, as well as at the time of the bowel movement, also rectal irritation accompanies it and there is no constipation, but rather I tend to quite soft stools, tired and some negative thinking tendency (suspect due to food sensitivity withdrawal reaction), limp 2 to 2, some hip and thigh pains, left thumb joint still has weak and painful feeling it had yesterday, 11:30 50 M and 3/8 ___, increased inguinal tension and throbbing, limp 4 to 5 in evening, more teeth, gum and left side of face sensitivity, more thumb pain and more pain in other fingers,
Day 162, woke with iliopsoas/inguinal/pelvic tension, limp 4 to 5, by afternoon teeth and gums too sensitive to floss, some inguinal pain when sitting at computer too long, also the usual Herx symptoms in hand, thigh, Achilles tendon, elbow.....
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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jcwat101
Research Professional
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Posted: Sun Sep 18th, 2005 20:58 |
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Start Date: 10/11/04
Fourth Progress Report (edited version)
One Month Break from MP-- Number Days B1 -B29 (May 13, 2005 to June 10, 2005)
I am including this part of my progress report because there is apparently still some Herxing and the pattern seems like it may be interesting. I felt I needed this break from the MP because I suspected I had developed a sensitivity to Benicar (see previous report for more details). And I believe my experience supports this view, though others may interpret it otherwise.
I also decided to use this break to test an experimental treatment, which I will only mention as XX or YY, for two different drugs. Someday, if it turns out to be a useful approach, I can share that information. I include it so that its short term effects, which tend to be some diarrhea or sleep effects will be explained and not be attributed to something else.
Toward the end of the break I did an experiment in which I tried the same dose of M and ___ that always gives me a Herx and found that I did not have a significant Herx without the Benicar. A week or two later, with the Benicar, it did cause a Herx. So, this confirms, in my case, the ability of Benicar to make the antibiotic more effective.
Overall, the other symptoms I have during this period include some related to food sensitivity symptoms and the associated withdrawal symptoms, and there are certainly some periods where there are some mild Herxing reactions despite not being on the MP, probably due to my immune system still working, since the D is still lowered. Examples include inguinal tension increase, mild hand and elbow pains, the limping tendency and the gum soreness, but they are generally much milder than when I was on the MP.
I have continued to avoid the sun and vitamin D as usual, and this probably accounts for the continued mild herxing. My mood has improved and thus the ___ + M Herx-induced fatigue and depression has lessened and when I started the MP again, was not as bad. Thus, the break was probably a good thing to try in my case. I think part of the reason it was better after the break was my Benicar sensitivity was gone due to having stopped a while. This is what happens with my milder food reactions. Taking a break causes the sensitivity to decrease. I could have continued and progressed on the MP I think, even with the sensitivity to the Benicar, since it was a fairly mild reaction and my herxes were not really intolerable, but I chose to stop a while anyway, to see if it would improve things.
Previously, in another thread, we had discussed bubbles in the urine. Now, I have begun looking at the urine with a flashlight (or torch for those non-U.S. residents) and find sometimes, there are a lot of specks floating through out the urine and even precipitating at the bottom. These are usually more abundant after I completed a food sensitivity withdrawal reaction, and usually seem to follow a phase in which there are a lot of bubbles, during the withdrawal reaction. I tend to wonder if the specks are calcium phosphate, and sometime I will try to determine this and let you know.
Although I did also notice symptoms that I believe were strongly correlated with food sensitivity reactions and the associated withdrawal reactions (see past posts and web site in sig line) and to the experimental treatment XX and YY, I do think that some Herxing was continuing during this MP break. These symptoms differed from when I was not Herxing. A good example of this sort of symptom is the finger and hand pains that worsen with use of my hands.
However, my Herxing overall was much less while off the MP. One difference in the milder Herx during this break that I identified was my limp, which seems to be caused by muscle contractions and sometimes pains in my hips, thighs, buttocks and iliopsoas and inguinal regions and occasionally in my knees and feet. I found that, when not on the MP, I tended to limp only in the middle of day, it was milder and my allergy/sensitivity reactions would tend to cause it to stop . For instance, when I had diarrhea due to a reaction, I would not limp for several hours afterwards. However, when on the MP, the limp is stronger, it worsens the more I walk (the second number I give when I rate the severity of the limp is after I have walked about 60 paces) and is less affected by allergy reactions. The limp tends to start early in the morning and last until bedtime, except when the antibiotics have worn off.
Day B1 (5/13/05), some pains in buttocks, hands, elbows, mouth soreness (maybe from Benicar pulse tests, where putting some Benicar in mouth might have irritated mouth), some gum sensitivity, hand and finger pains, slightly loose stool from Benicar withdrawal reaction, limp 1 to 2,
Day B2, limp 2 to 3 only briefly, slight gum sensitivity, mouth still sore, feel more optimistic than have lately,
Day B3, slight head and neck pain, slight finger and hand pain in evening, calf sensitivity, some brief shoulder pain, took dose of XX after dinner,
Day B4, a few fairly sharp itching sensations briefly in the morning, then some nausea and very mild diarrhea, still a little rectal bleeding but getting less each day, slightly more tendency to cough and clear throat, all of these may be related to XX, also my pulse went up about 5-7 beats per minute more after the bowel movement than would have been expected (which is virtually always an indication for me that whatever passed through in the stool includes something I am sensitive to), also extremely high inguinal/psoas/pelvic tension, even enough to cause me to be clumsy and to have to rest a lot, limp 1 to 2, fatigued muscles, slight gum sensitivity,
Day B5, slight abdominal migraine tendency and a little irritable, later sleep, limp 0 to 1, evening: calves sensitive, area of gum slightly sore, trace rectal bleeding,
Day B6, no more rectal bleeding now and none in succeeding days or after I restarted Benicar, and the sensitivity had become lower again (supports my view that at least in my case, the sensitivity I had developed to Benicar was the cause of the rectal bleeding, as it now occurs only occasionally, unlike the bleeding several times a day, before) very slight gum sensitivity, limp 1 to 2, mood O.K., but not much energy and a bit spacey, some hand pains, inner calf sensitivity, evening increased inguinal tension/throbbing,
Day B7, some mild migraine tendency and irritability (think it’s due to withdrawal reaction from stopping rice for a day), calves very sensitive, limp 1 to 2, inguinal tension, knee and hip pain, elbow tingly,
Day B8, limp 3 to 4, larger areas of calves sensitive to touch, slight pain in hips, knee, thigh, inguinal tension and slight pain, notice numbness in seat after sitting starts more quickly today, evening flossed teeth and not sensitive, these pains last few days probably still some Herxing due to immune system still killing the bacteria despite no MP.
Day B9, some mild migraine tendency, tired, generally achey, left calf sensitive, elbow tingly, limp 2 to 2, high inguinal tension, took YY as part of experimental non-MP treatment.....
Last edited on Sun Sep 18th, 2005 23:14 by jcwat101
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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jcwat101
Research Professional
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Posted: Tue Sep 20th, 2005 22:46 |
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Start Date: 10/11/04
Fifth Phase III Progress Report Day 201 to 260 (June 11 to Aug. 9, 2005) edited for Phase I section
I was on ___ and 50 Minocin for the entire time. Still Herxing significantly, though much less fatigue, depression and spaciness as part of Herx, especially toward the end of the time period. Decided to be conservative and not rush things to avoid depression. I experience primarily the limp and other aches and pains as part of the Herx by the end of this time period, and they are lessening. However, the Herxing does cause some increase in fatigue and spaciness. I do still notice that when I take the ___+M every other day consistently, there is some build up in reaction, so that the 5th dose causes more reaction than the first. So, sometimes I need to take a break by skipping a day or two of antibiotics.
I am still doing a monthly dose of XX, the experimental drug I discussed in last post (but I only take it once a month). I don’t think it interferes with the MP, as far as I can tell from my Herxing and other symptoms. Too soon to say if it is helping.
In this post I will use A for allergy/sensitivity reaction and put in parentheses after symptoms my experience and their timing tells me are from that cause. But these aren’t traditional allergies, they are non IgE, probably Th1 reactions to the foods or other substances, due to the dysregulation of the immune system from chronic infection.
When I refer to a thirst tendency, this is the sort of thirst where it doesn’t matter how much water I drink, I still experience thirst. I believe it must relate to an effect on the hypothalamus or some other brain area. I tend to feel this thirst during food reactions in the withdrawal phase and also during Herxes. I particularly had strong thirst in the early phases of ___+ M herxes, but now it only occurs more occasionally and it is milder as part of the Herx with ___ + M, but still particularly strong during the withdrawal phase of my food reactions.
To put all these symptoms in perspective, the pains I refer to are quite mild and generally don’t cause me to take even tylenol and I am less symptomatic than before on days when I don’t take antibiotics. Sometimes I am even surprised to feel almost normal for part of a day here and there--so I know I am really making progress. I am also sleeping pretty well most nights. For various reasons, though, I have not been pushing to increase the antibiotics as fast as I might. Then, I am sure I would have much stronger symptoms.
See Day 245, if you want to see how I did an experiment with a few minutes of sun exposure and how it increased my heart rate. I don’t recommend the experiment, but it was interesting.
I stopped Benicar for a few days again at one point and this time showed only a very slight sensivity.
Examples of some of day to day accounts:
Day 242, no limp in morning, noon took 50 M & 3/8___ , afternoon and evening limp 2 to 4, anxious tendency, elbows, fingers, inguinal/pelvic tension and throbbing, feet tingly due to circulation cutoff from pelvic tension (I believe),
243, diarrhea (A), beginning early morning and lasting all day, limp 3 to 5, briefly light headed, upper back tired/sore, noticed increased gum sensitivity in afternoon,
244, some elbow, episode of near black out when stood up quickly once (POTS--orthostatic hypotension), but minimal other symptoms before 11:30: 50 Minocin and 3/8___, limp gradually increasing after 1:30, until eve., when it was 3 to 5, inguinal/pelvic tension causing numbness of feet and seat when sit much, upper back sore again,
245, still some POTS tendency, fatigue and some thirst, did experiment with sun: sat 10 minutes with K cream on exposed skin, then exposed arms for 5 minutes with no K cream, pulse had stayed steady until exposed arms, then pulse went from 81 to 96 within 5 minutes, covered up and went inside, and it took about 2 hours for pulse to go back to normal-- I don’t recommend the experiment and others might have a different response, but I thought I would report it (the next day I was more tired and this might have been related to the experiment), around 11:30 the limp began, 3 to 5 (later than usual, I wonder if sun exposure delayed Herx?), slight knee, feet tingly, inguinal tension increased, ankle, elbow, hands,
246, left ankle sensitive, tired, drained feeling, but no limp, noon: 50 M + 3/8 ___, then usual symptoms began to increase soon after, thigh, inguinal, ankle, limp 3 to 5,
247, calf sensitive, inguinal tension especially high last few days and not wearing off much between antibiotic dosages, somewhat more fatigues (possibly related to sun exposure experiment?), limp 3 to 5 starting mid morning, upper back tired/sore, clumsy and jumpy tendency, ankle sensitive, mood better later, but tenser...
Joyce Waterhouse, Ph.D.
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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jcwat101
Research Professional
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Posted: Thu Sep 22nd, 2005 15:51 |
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Start Date 10/11/05
Finally caught up on my progress reports! I’m still quite happy with my progress, though I still have quite a ways to go (by the way, I took a month off and took other shorter breaks, so in a sense, my length of time on the MP could be seen as a couple months shorter than indicated by the Start Date -- so it is more like I have been on it closer to 9 months than 11 months).
Thanks so much for the staff's hard work and unselfish dedication. I urge everyone to donate to the foundation (and encourage family members to do so also) to help them continue their work.
Sixth Phase II Progress Report (still on the alternate phase II)
Day 261-300, August 10- Sept. 18, 2005
I finally increased this time, by the end, from 50 brand name Minocin and 3/8 ___ to 100 mg generic minocycline and 3/8 ___. Things are going O.K., similar patterns overall. I wasn’t at the level of no Herx at all before increasing the dose, but felt that the worst aspects of the Herx, the fatigue and spaciness were less and the pains were decreasing, and so thought I could tolerate more Herx.
I seem to be able to tolerate it, although it gets hard on days when I am also experiencing a food sensitivity withdrawal reaction at the same time. Then, the added depressive tendency of the sensitivity reaction and the antibiotic reaction can make it more difficult. I had more of that constant thirst near the end, especially on the higher dose (this was a symptom I had a lot of initially on this combination but that declined on the lower doses after I had been on them a while--I have a theory about the constant thirst symptom which you can read about when you get to Phase II, or PM me, if you are very eager to know more about it) ). But I am getting by and when I do take a break from antibiotics and am not having a reaction, I can tell how I have improved.
By the way, to monitor my limp, I find I need to take larger strides. Sometimes I don't notice the milder or even moderate levels of limp if I just take small steps and walk slowly.
With the increased minocycline, I did notice an increase in the intensity of symptoms, and more symptoms. The various pains were a little stronger and in more different areas and I needed to rest a little more. I didn’t go to the intermediate step of 75 mg Minocycline, but instead went up to 100 mg, but switched to the generic. Since I find I absorb the brand name minocycline better than the generic, by switching from the 50 mg brand name minocycline to the 100 mg generic, the total effect was not really as much as a doubling of the dose of the brand name drug.
Selection of Day to Day accounts:
Day 261, still some thirst and drained feeling and slightly nervous, skipped antibiotic today, felt pretty good and fairly stimulated in the evening,
262, fairly groggy and slow thinking in morning, 11:40 50 M & ___, quite sleepy in afternoon, rested extra, elbows tingly, limp 3 to 5,
263, elbow, arm, knee, hip pain, gums sensitive, some numbness in seat and pelvic area when sitting for long,
264, had visitors, skipped antibiotics,
265, tired, drained feeling, noon: 50 Mino + ___, limp 3 to 5, elbow, arm, wrist, hands, all slight pains or more sensitive to touch,
266, limp 3 to 5 or 3 to 6, thigh, gums, elbow, hands, upper back and right shoulder sore,
267, occasional twinge in hip, elbow or knee, left finger itchy, skipped antibiotic because mood is worsening and having trouble thinking (A, chicken and rice withdrawal reaction, decided I need to rotate off of them for a longer time, since reactivity has built up over last few months),
268 and 269, took break from antibiotics (due to mood worsening and A and things I need to do), hardly any of regular Herx pains,
270, noon 50 M + 3/8 ___, 2 hours later, limp 3 to 5 began, hard to concentrate today,
271, little, if any limp until 9:30 a.m. limp 3 to 4, knee, inguinal/pelvic tension and tingly sensation extending to right foot, fatigued, slightly shakey, limp 3 to 5, hand and upper back pain (despite resting more) so must be Herx, less abdominal bloating in evening than usual....
____________________
20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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jcwat101
Research Professional
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Posted: Mon Jan 23rd, 2006 11:26 |
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Seventh Progress Report: Edited for Phase One Alumni Forum
My Previous Reports are apparently still in another forum at http://marshallprotocol.com/forum20/1550.html
In another week or so, I hope to get completely up to date in my reports-- I have recently started a 3 antibiotic combination and am Herxing pretty hard but doing fine on it (starting at very low doses for all 3).
Day 303- Day 354 (9/21/05-11/12/05)
Start date for MP: Oct. 10, 2004 (though I took a month off at one point)
Began Modified Phase Two : Feb. 23, 2005
Benicar 20 mg crushed and put in a capsule (q6h or q8h at night, the crushing increases the absorption for me a lot, so it is probably more the equivalent of 120 mg daily), minocycline doses up to 100 mg and up to 5/8 of alternate phase two antibiotic, Q48h or Q72 hours (or longer at times),
Overview: I should say that on the whole, my sleep has been improving. In particular, it used to be that if I did much of anything after about 5 pm other than rest in bed, I would not sleep very well. At times, I can do things in the evening, and not have nearly the negative consequences I used to.
Note at the end of the daily record how I was able to stand up for 2 hours to give a talk on the MP at a support group meeting and not even get particularly nervous about it. I doubt I would have even been up to talking 10 minutes before a group before the MP. Hurrah!
This report includes 100 mg Mino + 3/8 modified phase two antibiotic, up to 100 M + 5/8 second antibiotic. I increase by increments of 1/8 on the second antibiotic. I always find this increment causes a significant increase in Herx for me and feel that an increment of ¼ would be harder on me, so I generally stay with these smaller increments, as I did in Phase One (also started at lower than usual doses this time as I did in Phase one).
I have noticed that I tend to have more physical symptoms the first 24 to 32 hours after the mino. and clindamycin, and often worse neurological symptoms (depression, fatigue, lack of motivation) during the 32 to 72 hours following. A few times I had a symptoms increase more on the third and fourth day (gums/jaw soreness on two occasions, and inguinal tension increase on one occasion). When I take the doses q48 hours, I often get a cumulative effect that makes the herx a little too much. On the whole, I think to avoid a cumulative effect and get all the herxing out, I think a 3 or 4 day cycle may be generally better for me.
In this report, I use the letter "A" to stand for my observation that I think the symptom or symptoms just before it are related to my food allergy/sensitivity reactions, based on timing and prior experience. I have stopped trying to link things to phosphate excretion, as I did near the beginning. The limp I experience is related to pains and tension in various muscles involved in walking and the first number is the level when I first begin to walk and the second number is after I have walked about 60 paces.
Since my 1,25D was only 12 pg/ml on my last test at the height of a herx and during ovulation (when it should be highest) and was done at a reliable Quest Lab that has given me consistent results, I have been trying occasional 200 IU D (since none in my diet), and am also trying being a little less strict on light avoidance. I have started taking about 200 IU about once a week (since I can’t eat foods with D in them due to my extensive food sensitivities).
Neither the less strict light avoidance nor the occasional vitamin D seems to cause any symptoms or have any effect on my herx, so I think this shows that my 1,25D is still in a good range, though I will test the D levels soon to verify this. I do seem less sensitive to light in general, however direct sun on my skin for several minutes can still raise my pulse if I don’t have K cream on, so I avoid that. However, when I have driven in the car once or twice or walked outside for a minute or two (mostly covered, with hat, gloves and sunglasses), my pulse did not go up.
So, anyway, I’m testing how much I tolerate and trying to see what is the best way to get a little vitamin D to keep my 1,25D in the correct range. Of course, the vast majority of people should not do this, but my 1,25D results seem to warrant it at least on a trial basis-- and if when I test the D levels, they have gone up too much, I will adjust my actions accordingly. My case was atypical in that my 1,25D came down quite rapidly (down from 63 to 22 after a few months on the MP).
FSM stands for Frequency Specific Microcurrent ( http://frequencyspecific.com , for more info) and is something we were trying to see if it would help my mom’s back pain. It actually helped the nerve pain going down one leg and her bad sciatic pain that bothered her every morning. It couldn’t help the part due to vertebral slippage that gets worse when she stands -- eventually I hope she will be helped further by the MP. But since I was going with her to the appointments, I thought I would try some short sessions to see if FSM might be compatible or helpful for someone on the MP.
I never did a full hour session, and never did it when herxing much. It is similar in some ways to TENS treatment, but is much more fine tuned in the frequencies it uses and from what I have read, it may help allow more normal electricity and blood flow to injured areas to help in healing injuried areas and may be much better than TENS.
As I describe below, I think it may have helped reduce my tendency for inguinal and abdominal tension and cramping related to trigger points and fibrotic tissue in my abdomen. I think my tendency to constant thirst (unrelieved by drinking fluids), which seems to be associated with that inguinal tendon tension increase and that tends to occur with some herxes and food reactions was improved after the treatments. It may have been coincidence, but I thought it worth noting.
Daily Reports:
Day 303, stopping Benicar for a few days (I don’t notice much from being on it vs off Benicar, except that at any given dose of antibiotic, I Herx much more when on Benicar), slight foot, hands, elbows, in evening took XX (see previous post),
Day 304, slight diarrhea from XX, slight hand, elbow, rash from plastic stuff used to stop bleeding after blood draw (lasted 2 weeks and was itchy the first week), slight thirst (A),
305, moderate diarrhea (XX, A), slight jaw and gum soreness, slightly nervous,
306, thirst, fat | | |
