 |
| Author | Post |
|---|
jcwat101
Research Professional
|
Posted: Sat Nov 18th, 2006 13:25 |
|
Aunt Diana,
Thanks for your kind words. I have put up posts many places (e.g., yahoogroups) and often I have no idea if anything comes of it.
I'm so glad you and Patty have joined our MP family and are progressing.
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
|
Steve
Member in Phase 2
|
Posted: Sun Nov 19th, 2006 00:30 |
|
Another shout-out from someone who appreciates your contributions......
......it's especially heartening to see a ranking member of this community who shares my CFS/IBS and has paved the way.
thanx!
____________________
CFS IBS 125D35 25D23 Ph2Apr06 NoIRs. 6/06 D216Jun06 Ph2Jan07 D2514May07 D2512Jun07 MP brk Jun-Sep07 Restart; D2521Sep07 lite exp r/t to work NoIRs
|
jcwat101
Research Professional
|
Posted: Mon Nov 27th, 2006 12:17 |
|
I had this mostly written a month or two ago, but only got around to finishing it recently. I'm still not caught up on these progress reports yet and may not be for several weeks.
Joyce
Thirteenth Progress Report (edited for Phase One Alumni Forum) - June 19, 2006 to Aug. 9th 2006, continuing regular Phase Two
Start date for MP: Oct. 10, 2004 (though I took a month off at one point)
Began Modified Phase Two : Feb. 23, 2005, a couple months of a 3 antibiotic combination, then
Began Regular Phase Two on April 7, 2006
After the L.A. conference, I went from 1/32 of the regular phase two antibiotic and 75 mg mino. up to 1/8 of the second antibiotic and 100 mg mino. To tell the truth, looking back, I realized that somehow I got up to 1/8 without being certain how I did it. I think during the later part of what I thought was 1/32 in my last report, I actually had crept up to 1/16. Then when I thought I increased from 1/32 to 1/16, I actually was going from 1/16 to 1/8 – so I have made the following record conform to that.
I had a big gastrointestinal immunopathology (Herx) reaction following Day 5 of the first cycle at 1/8 tablet. It caused me to sleep less well for several nights and caused some diarrhea, raised pulse, and other symptoms similar to my food or gastrointestinal yeast or bacterial die off reactions, but it was a stronger reaction than those usually are. It would fit my past experience to explain this by the idea that this dose was able to kill off some gastrointestinal bacteria that I am particular sensitive to (during the die off, toxins and breakdown products from the bacteria might have stimulated an immune response somewhat similar to the response I have had to food, yeast and other organisms. I have had gi Herxes before, but not usually this definite or with this big a pulse increase (about 6 beats per minute increase).
I had been trying 60 mg crushed Benicar for a while to save money (for me the effect is the same as at least 90 mg/daily). I decided, as this is considered too little Benicar, I would increase the Benicar from 60 mg crushed to 80 mg crushed (similar to going from about 100 mg to 130 mg uncrushed, in my estimation based on my reaction to it). I prefer the crushed Benicar, since I know at times I have had a lot of trouble breaking down pills and crushing them has helped. The trouble breaking down tablets was evidenced by periods during which I would find whole tablets (of calcium, for instance) in my stool that had not broken down. This problem has been the worst when I have had diarrhea or poor digestion due to food allergies/sensitivities, which are secondary to the immune dysregulation from the bacteria.
I had been trying 60 mg crushed Benicar for a while to save money (for me the effect is the same as at least 90 mg/daily). I decided, as this is considered too little Benicar, I would increase the Benicar from 60 mg crushed to 80 mg crushed (similar to going from about 100 mg to 130 mg uncrushed, in my estimation based on my reaction to it). I prefer the crushed Benicar, since I know at times I have had a lot of trouble breaking down pills and crushing them has helped. The trouble breaking down was evidenced by periods during which I would find whole tablets in my stool that had not broken down. This problem has been the worst when I have had diarrhea or poor digestion due to food allergies/sensitivities, which are secondary to the immune dysregulation from the bacteria.
When I increased the Benicar, I felt my Herx get quite a bit stronger, so I backed down the Benicar again, because I was finding it hard to tolerate. The brain fog/depressed feeling and fatigue got especially bad. The limp was worse too. Later, I backed down on the doses of antibiotics so I could tolerate the larger Benicar dose (see next progress report).
When I describe the limp as 3 to 5 it means that I start to limp immediately when I start walking at a level three and it increases to level 5 by the time I have walked about 60 paces. When the limp doesn’t start immediately, I give the number of paces at which it starts. For now, I will only mention the inguinal/pelvic groin area tension when it really stands out. In general, though, it increases usually whenever the limp increases.
When I refer to a slight migraine or a migraine tendency, usually this is associated with some head or neck soreness, a tendency to nausea and an overall feeling I have had with migraines in the past. Taking tylenol or being more active keeps it from increasing too much. I used to have bad migraines, but in the last few years, I have only this milder migraine tendency. It usually is most associated with food allergy/sensitivity withdrawal reactions for me, though I’m sure the true underlying cause is the CWD bacteria (see Issue 5 and 8 at http://members.aol.com/SynergyHN for more on withdrawal reactions and how I identify food reactions).
My tendency to foot spasms when relaxing feels like it is related to inguinal tension being released and somehow it seems to provoke this tendency to cramps/spasms in my feet. I can typically avoid a bad cramp by moving my legs a certain way, to sort of shake off the cramp sitting or standing.
I had an interesting Herx I call a "forgetfulness Herx" (day 6.6), where I think of something and forget it before I can write it down and then it takes me some time to remember it – happens several times.
Also, for the first time, I have had eye itch Herxes, mostly the inner portions of my eye (perhaps the conjunctiva?) and sometimes the lower lid.
While I think of it, I also had a Herx (or I suppose it was a Herx) in which I was seeing a green spot in the same area of my visual field –it would move when I moved the direction of my gaze. That has never happened to me before—it only lasted a few minutes.
Around the beginning of August, I completed weaning off of the small dose of Klonopin I had been taking (never above 0.4 mg , less than the lowest dose tablet). I don’t detect any difference in reaction. (Note: Later, I would still take some, usually a tiny amount, occasionally – I don’t detect any effect on my Herx)
Some of my Daily Reports – Just Cycles 5 and 6 Abbreviations (sens: sensitive, abd: abdominal, ing: inguinal)
June 19, Day 5.1 (cycle 5, day 1 of cycle), 7 am. 1/32 (was actually probably 1/16 ) and 75 mg mino no limp until 10:30, then limp 3 to 5, inner calf quite sensitive, left inguinal pain, toe pain, a sharp arm pain, some tendency to irritability and depression, slight migraine tendency,
5.2, rotating off rice and chicken, limp 3 to 5 all day, unmotivated, slight depressed tendency, some abdominal cramps, some pain near base of spine, mild migraine, elbow, slight right teeth and jaw pain when brushing teeth, some circulation cut off to right foot related to inguinal tension, thigh, calves, top of feet, knee, ankle, get sore seat from sitting,
5.3, a little diarrhea, apparently from allergy to tylenol PM reaction, limp by 125 paces, right foot pain, then 10:30 am: 100 mg mino, by 3:30, limp 3 to 5, but symptoms start building about 2 hours after mino dose, brain fog and fatigue increasing, top of feet, ankles, knee, left gluteal medius, high inguinal and iliopsoas tension and throb, upper right teeth and gums sore (usually only left side), throat a little sore,
5.4, depressed tendency, but O.K. if I ignore it, limp 3 to 5, some shoulder, inguinal tension feels like it starts to cut off circulation to feet when I sit for a while (used to have this symptom a lot, but haven’t much lately), ankles and feet near spasm at times during relaxation, left hand, wrist, gluteal muscles, above knees, upper back, right teeth and gums a little sensitive,
5.5, no limp by 165 paces, slight Achilles tondon pain, 11 am: 100 mg mino, 5 pm limp by 40 paces, gluteal pain, brief shoulder, finger, left underarm slight pain,
5.6, limp by 220 paces, some knee, calf pains by 90 paces, some foot, upper back, shoulder, elbow,
5.7, 4:30 am. 100 mg mino, 10:30 am: strong tendency to foot spasms, 11 am limp 3 to 5, some slight migraine feeling, limp later in the day not until 50 to 100 paces, some numb feeling in feet when sitting much, left elbow, knee, some gum sensitivity on both sides.
5.8, no limp up to 230, felt pretty good, forgot to take morning Benicar until 9 am., left gum sens, left inner pretty strong left inner calf sens., some abd cramps, felt in good mood, perhaps overstimulated at times, mod left and slight right teethand gum sens.,
5.9, woke at 3:30 a.m. and have generally been waking earlier last few days, 5 am: 100 mg mino, some foot spasm tendency while relaxing, feel drained, but mood O.K., some inguinal pain, 2 hour nap, no limp by 180 paces, both inner calves sens, knee, elb, left gum sens, inner right eye irritated and itchy,
5.10, calf sens, right lower eyelid sore and continued itchy off and on all day, 300 paces without limp before took extra dose of 25 mg mino at 5 am to see if more frequent mino still increases Herx, some left gluteal pain, left gum sens, elbow, limp by 75 paces, thus showing increased Herx, some cramping tendency, ankles and calves, especially left, very tired/sleepy,
June 29,
6.1 some inner calf sens., no limp past 500 paces, but some foot/ankle pain, 6 am. 1/8 (or slightly less) and 25 mg mino, 11 am strong foot spasm tendency when resting, limp 4 to 6, occasional sharp brief pains, shoulder, ankle shoulder, also elbow hand, moderate gum sens. inner calf, small toes, brain slower, very high inguinal tension, bit side of mouth (seemed related to ing. tension and allergy withdrawal reaction),
6.2, realized forgot Benicar last night, woke with feeling of pressure on bladder/urinary urgency, limp 1 to 3, later lessened and by evening no limp until 60 paces, very high ing. tension and irritable feeling, sharp calf pain and then pectoral pain, elbow tingly, gum sens., slight inner eye irritation,
6.3, pushing myself lately, setting up 2 computers, inner right eye irritation continuing off and on and occasionally on left eye too, no limp past 130 paces, 5:30 am 25 mg mino, foot pain, 1:30 limp 1 to 5, 7 pm limp by 110 paces, took a nap, mood pretty good after nap, elbow, hand, slight bowel cramping, mild gum sens., right toe itchy,
6.4, limp by 200, right knee—front of joint, sensitive to touch, still some eye itchiness, this time more left eye, left gum sens. And slight jaw, upper back, left forearm and elbow tender to touch, outer right calf sens., despite all the fatigue and other symptoms this cycle, I have been able to stay fairly active, I think this has been helped some by my allergies being fairly well minimized lately.
6.5, right knee still tender and some left knee too, 5 am: 50 mg mino (probably should not have increased it – should have kept to 25 mg, but since limp not too bad or long lasting did anyway), some urge to cough,
fairly frequent hand pain, elbow, also weak feeling and poor balance at times, left forearm slightly numb and fingers tingly, brain fog/slow thinking/space more easily have disoriented feeling, limp 3 to 5, knee tendency to have feet become tingly (seems to be related to high inguinal tension affecting nerves and/or blood supply to feet), occasionally right inner eye itch,
6.6, slight knee and shoulder, "forgetfulness Herx" this morning and last night, where I think of something and forget it before I can write it down and then it takes me some time to remember it – happens several times, foot pain, very high inguinal, left gums, lymph nodes and especially left jaw painful and throbbing – not so bad that I needed a pain killer, but fairly strong and increased in evening, limp 4 to 6, some abd. ramping ,ook a 2 hour nap , a little emotional/depressed at times, brain fog/spacey, front calf pain briefly, eye itch,
6.7, weak and tired, brain fog, limp 3 to 5, diarrhea and increased pulse (think this is from the effect of a gi Herx from the 50 mg dose of mino two days ago), left jaw/teeth/gum/lymph node painful,
11:30 took 50 mg mino., sudden pain/itch inner corner left ey, left forearm and ankles tender to touch, back of left hand very tender, limp 3 to 5, some abd. cramps,
6.8, limp 3 to 6 most of day, ankle and gum/lymph node sore, slight eye itch, hand pains, foot, knee, calf pain stronger, left thigh, elbow, took 2 hour nap, some abdominal cramp tendency,
6.9, right inner ankle sensitive all day, left gums and jaw, elbow, knee, limp began at 150 paces, 10:30 am. 25 mg mino (decreased dose to give me a break partly due to menstruation coming), doing some of my testing of zinc oxide, also got a little sun exposure on purpose as part of test, limp 2 to 4, throat a little sore on left side of 30 minutes, tingly pain in toe,
6.10, inner right calf, high inguinal (partly due to menstrual cramps), pinprick gluteal pain, brief pain in front teeth, some gum sens. limp by 200 paces,
6.11, gum and jaw pain, right ankle and calf, elbow, some pain in left temple region, mood pretty good,
12:30: 25 mg mino, limp by 35 paces,
6.12, inner calves and ankle, feel pretty good overall (despite less sleep and other stress), rotated off rice and chicken and eating tapioca and Canola oil only today.
____________________
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
|
jcwat101
Research Professional
|
Posted: Sun Apr 1st, 2007 11:04 |
|
I just wanted to briefly mention something interesting I have found out lately. I have mentioned before about my food sensitivities being pretty bad over the years and staying pretty bad on the MP. Starting a few months ago, my reactions began to lessen. I began to tolerate a number of things I did not tolerate before. And those things I did react to, caused a significantly reduced reaction, and I was thrilled.
So, I began widening my diet and testing my reactions to a lot of foods to see what I would tolerate. I have mentioned before how my heart rate would increase after consuming a food and even increase significantly within a couple minutes of putting the food under my tongue and that was one of the ways I could tell what foods I was reacting to (see Issues 5, 8 and future issue at http://members.aol.com/SynergyHN ).
One of the ways my improvement shows is that when I react to a food with a certain pulse increase, even a fairly high increase, it no longer causes rectal bleeding or chapped lips, which it always did before. I attribute this change to killing of bacteria on the MP. The sleep disturbances, withdrawal reaction migraines, lightheaded tendency and constant thirst during a withdrawal reaction are also much less even when I do have a reaction as indicated by the pulse tests. I have never had improvement in my food reactions to this degree during my over 15 years, and so must attribute this change to the MP.
But there was an interesting consequence of this increase in exposure to different foods, as I was testing what happened when I expanded my diet. I realized that I am probably highly sensitive to chlorogenic acid. I found that a wide range of foods that have it give me a similar high reaction in terms of symptoms and an identical high pulse increase. For example, I am highly sensitive to apples, coffee, tea, melon, prunes – these are some that I found from my research on the web, had high levels. It was a lucky coincidence for me that around the time I was having these reactions, Dr. Marshall identified chlorogenic acid as having an ability to bind the VDR, as revealed by molecular modeling. It made it a lot easier for me to make sense of things – apparently chlorogenic acid, aside from its other properties can also be a potent source of allergy/sensitivity responses. Interestingly, my father also expanded his diet recently and the same thing happened with him – he also became very sensitive to anything containing chlorogenic acid. I also seem to have a similar high sensitivity to anything with carnosic acid, another substance identified as binding to the VDR.
Anyway, I hope to post something soon on the SynergyHN web site, mentioned above, giving some more of the foods that appear to have significant amounts of chlorogenic acid based on my reactions– and I will also list the supplements that seem to be O.K. (mostly a few Solgar supplements –like their chelated calcium and other chelated minerals) and mention some other things I have found. My recent testing shows that a lot of supplements, even high quality, hypoallergenic ones, seem to have some substances similar enough to chlorogenic acid to cause me to have a similar high reaction (20 beats per minute or greater increase in heart rate).
Joyce Waterhouse
P.S. I really need to get caught up on my progress reports and hope to start doing that soon.
____________________
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
|
jcwat101
Research Professional
|
Posted: Mon Apr 16th, 2007 15:05 |
|
I just thought I'd post the supplements I take. I have recently become highly sensitized to vitamin D and chlorogenic and carnosic acid and other things with a similar structure (see above post), which apparently are similar enough for the immune system to think they are the same thing, more or less (a cross reaction).
My limited diet means that I do need to take some supplements even if they react some (cause pulse increase and other symptoms). I have adjusted my intake of supplements to minimize reactions and now take only:
30 mg crushed Natrol Ester C (divided into 3 doses of about 10 mg each)
a few drops of Unique E (AC Grace)
2 tablets Solgar Vitamin K
1 tablet Solgar Selenium
¼-1/2 Solgar Chelated Zinc
1 Solgar Chromium picolinate
1 Solgar multi –chelated boron,
1 Twin Lab magnesium oxide (take ½ capsule twice daily)
6 Solgar Calcium Chelate
½ Solgar molybdenum alternating with ½ Solgar manganese
½ Twin Labs B-50 (vitamin B complex)
For vitamin A, I eat some carrots, but may start trying a fraction of a Thorne brand dry Vitamin A, though it is still fairly reactive at this time.
One can usually find these at health food stores or http://www.needs.com or http://www.amazon.com .
But, interestingly, the MP has helped other food sensitivities and so if I follow the right diet, my IBS and other food reactions (eg., rectal bleeding) are better due to the bacterial killing I have achieved on the MP.
Joyce Waterhouse
____________________
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
|
jcwat101
Research Professional
|
Posted: Thu Apr 19th, 2007 20:37 |
|
There are more details relating to my pre MP history and articles on the MP, as well as other topics I have written about in the past 10 years at (for example, methods I have used and developed further for testing for hidden food sensitivities at home):
http://members.aol.com/SynergyHN (if any of the SynergyHN links don't work at first, wait a few seconds and try again)
Joyce Waterhouse
Last edited on Thu Apr 19th, 2007 20:50 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
|
jcwat101
Research Professional
|
Posted: Thu Apr 26th, 2007 13:45 |
|
I wanted to add that I have found a source of beta carotene that doesn't cause me to react. It is mostly derived from algae and uses olive oil instead of soy oil.
So, I thought that I should add it to my list of D free supplements that I need to take due to my diet being so deficient:
It is Solaray Food Carotene (25,000 IU Vitamin A activity -- beta carotene is a precursor of vitamin A). I will probably take it 2 or 3 times per week.
Joyce Waterhouse
PS. Also, for those for whom the pulse test doesn't work (see above link) or who don't find it convenient and want to try the blood test for non IgE reactions that my family has also found useful, see:
ALCAT Worldwide
Other methods, like elimination diets also have been helpful for me.
Last edited on Thu Apr 26th, 2007 13:55 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
|
jcwat101
Research Professional
|
Posted: Thu May 24th, 2007 22:56 |
|
I have noticed that during my time on the MP my symptoms of anxiety and depression have reduced in intensity and frequency, though I am still not free of them. I thought I would share some things that have helped me to cope (below). This is a draft of something I plan to put in the SynergyHN online newsletter, that I have mentioned previously in this thread.
Joyce
Thoughts on Coping with Mood Effects of Immunopathology Reactions (First Draft)
by Joyce Waterhouse
There are many good articles on coping strategies, but I wanted to share some methods that have helped me over the years of being ill and through the ups and downs associated with killing bacteria on the Marshall Protocol. Of course, these methods do not substitute for other medical methods of managing symptoms. You should not put up with symptoms that are too severe when it might be better for you to slow your immunopathology or use some other medical intervention as recommended by your doctor. But there may be times when these methods may be helpful.
1. Combating the negative thoughts of depression and anxiety. I can tell when my biology is affecting my thinking whenever I find that almost anything I think of leads to a train of negative thoughts, including feelings of guilt and low self-worth. It is especially clear when I think of something that would usually interest me or that I enjoy, and my thought is "that's boring" or I start listing negative future events that may occur or a list of negative aspects or reasons I don't like a particular thing, person or situation.
I would also find myself generalizing and expanding the negativity, until the whole world, including the future of the world seemed hopeless. Over time, I have learned to interrupt this line of thought, or even better, keep it from getting started by always having something to occupy my mind. At times, I have found it useful to always have a radio on with news or talk (even carrying it around with me to the bathroom or kitchen), thus preventing the negative thinking from getting started or gaining momentum. Then, whenever I would start to have a negative thought, I would notice as soon as possible and tell myself that isn't reality, but that it is just "negative thinking" from the inflammatory chemicals in my brain. Sometimes, when it was at its worst, I would not only have something like a book-on-tape on, but would keep some beautiful, peaceful and/or uplifting music on in the background as well and this helped calm me and lift my mood. (Note: Books on tape have been the most important resource for me (see Books on Tape, 1.2d ), because they allow me to rest while they are on, even learning things if I want and sometimes allowing me to also do something else at the same time).
Besides just avoiding the negative tendencies, it is also helpful to "reframe" whenever one can. To do this one comes up with a statement that will combat the overgeneralizing negative tendency. One example of this is to explain negative things as due to some specific, temporary cause and not conclude that it is some permanent factor. So, just the statement to yourself that "this is temporary" or something else that counteracts the negative thought can help. When something bad happens, I try to think of something I can learn from it or some way I can come up with a positive result from it. Whatever thought you can come up with that is the most empowering for you is the one that will generally be the most helpful. It can be done in a much more systematic way, of course, and this is what is done in cognitive behavioral therapy (see: Cognitive behavioral therapy - Wikipedia, the free encyclopedia). I have never done it all that systematically myself, but have tried to do it to some extent on my own.
2. How to Get Things Done When Unmotivated and Apathetic. I have found that if I can avoid too much negative thinking using the methods mentioned above, I can use another technique along with it to get things done even when I feel fairly unmotivated due to inflammation's effects on my mood and energy level. What I do is I list a number of things that have occurred to me would be good to get done -- preferably making the list at a time when my mood and energy is at least somewhat better than average. I make sure I don't think about how I feel about doing them (eg. whether they are "worth it") or whether I want to do them, because I know with the biology of my brain, my mind will tend to decide it isn't worth it or that I'm not up to it.
Then after thinking about the things for a while or perhaps the next day, I start doing the things on the list-- without even taking a moment to think about whether I "feel" like doing them. I expect that the things on the list may take longer than I think they will, but if taken one thing at a time, one moment at a time, I am usually surprised at how much I end up doing. Depending on my health, I may even find that the stimulation of getting things done and the sense of accomplishment starts to lift my mood, but if it doesn't, that is O.K. At least when I rest later, I will rest with a feeling of accomplishment and some things will have gotten done, and this will help in my efforts to feel positive as much as I can manage to and should help combat negative thinking (discussed in #1). I have to use my experience and judgement to decide when I really am too tired and need to take a break and rest or take a nap. It is important to realize this and not overdo. Rest is very important and the above methods are for when you are rested and the problem is just the motivation and mood that is the problem.
I try to have at least some of the things on the list be relatively easy to do, so that if I am not up to doing something more challenging, there are other things I can do. Then, I can save the more challenging things for first thing in the morning, or some other time when I tend to feel somewhat better.
3. A Brief Empowering Form of Visualization. Another thing that I have learned about is a very brief visualization method that one can do when one wakes up and then near bedtime and any other time one feels like it. To start out, you close your eyes and you think of a time when you felt really great, preferably at a specific moment in time - any time in your life. You imagine the situation in as much detail as possible and how you felt and then imagine yourself in that situation again and experience the feeling. Then you do some physical act, like clenching a fist, pressing your finger or your side or anything you choose. And then when you want to draw on that feeling, you repeat that action and think of that positive feeling. Sometimes I forget to do it for a few days, and I see the difference. Even if you don't feel some instant transformation, it does seem to have an effect.
I have a couple of these visualizations that I have done so far. One was a moment when I remember feeling really lucky and grateful and joyful. Another moment that I have tried to "program" into my mind was one where I felt very confidant, unafraid and in control of things.
____________________
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
|
jcwat101
Research Professional
|
Posted: Mon Jul 9th, 2007 21:17 |
|
Supplements
I wanted to mention that I realized that the Solgar Selenium I was taking was quite a bit more than the RDA, so I have reduced my intake to 1/4 of the Solgar selenium most days (but I will probably skip it on days I think I have a better mineral intake).
In fact, my dietary restrictions are less now due to a decrease in my food allergies/sensitivities due to my progress on the MP. Therefore, I will probably take these low dose supplements less often and will eventually stop them altogether. My aim is only to get the RDA, as the MP recommends and eventually to get it entirely from my diet.
Joyce Waterhouse
Last edited on Mon Jul 9th, 2007 21:18 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
|
jcwat101
Research Professional
|
Posted: Fri Aug 31st, 2007 01:32 |
|
I am way behind on progress reports, but wanted to report some of the good news.
My food sensitivities are at the lowest they have been in 20 years!
The sensitivities began to lower a little after two years into the MP, then they got a lot worse again when I tried to expand my diet. I discovered, as I mentioned in previous posts that I had become sensitive to chlorogenic acid, a substance Dr. Marshall has identified to be able to bind the VDR. I found it to be fairly abundant in many foods, though most abundant in coffee, tea and apples.
Then, I realized I had become sensitive to anything that had a similar enough structure to chlorogenic acid that it was able to bind the VDR (including vitamin D, Benicar, genistein, carnosic acid... -- for more details, see previous posts).
As I avoided all those substances, my sensitivities gradually came down, including my sensitivity to Benicar and to sun.
Finally, I realized that eating starchy foods, like grains or potato and certain sugars and fibers was leading to the growth of bacteria that appear to produce a substance that also binds the VDR and that I was sensitive to. So, when I finally reduced the starches and other things that feed these bacteria, my sensitivity decreased even more.
I had needed to take a break from Benicar during that period of severe sensitivity, but after some time of lowering the starchy food, I was able to go back on the Benicar. (Note: Most people find Benicar palliative and would not need or want to do take a break like this. Also, a sensitivity as severe as mine is probably quite rare -- also note that reducing starches and chlorogenic acid may increase bacterial killing for some people --see some posts in low carb diet thread at: http://marshallprotocol.com/forum11/5870.html ).
Anyway, the good news is that now my food sensitivities are remarkably reduced, far below anything I have experienced in 20 years! For years, I was a "universal reactor" and spent a lot of time eating only a couple foods (which I also became sensitive to and so had to rotate off of periodically).
I think my chemical sensitivities are better too, even though they were improving some before this recent experience.
So, anyway, I continue on with the MP. At the moment, I have been on 25 mg mino and a small dose of one of the modified phase two antibiotics that I haven't used in a long time, but will probably be changing that before long.
All throughout the MP it has been important for me to start at quite low doses of antibiotics and stay at low doses for longer periods than most people. I have also often needed to have longer times between antibiotic dosages.
I also have tolerated 120 mg Benicar daily better than 160 mg (I appear to have greater immunopathology at higher Benicar than lower) and so have tended to stay at the lower dosage.
One other thing I thought I'd mention is that recently, although I tolerate sun exposure better in some ways (due to my vitamin D sensitivity reduction), sun exposure does stimulate some bacterial killing for me ( I can tell this through a very reliable way I have of measuring my reaction -- the distance I can walk before my muscles weaken and I start to limp). By wearing zinc oxide sunscreen, however, I can mostly block this effect, as I don't want the bacterial killing to get out of hand.
Joyce Waterhouse
Last edited on Fri Aug 31st, 2007 01:38 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
|
Reenie
inactive member
| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
| Status: |
Offline
|
|
Posted: Tue Oct 9th, 2007 18:51 |
|
I also have tolerated 120 mg Benicar daily better than 160 mg (I appear to have greater immunopathology at higher Benicar than lower) and so have tended to stay at the lower dosage.
... sun exposure does stimulate some bacterial killing for me ( I can tell this through a very reliable way I have of measuring my reaction -- the distance I can walk before my muscles weaken and I start to limp).
Hi Joyce,
These two comments are confusing to me.  Maybe you can help clarify. 
First off, if you have more IPR on more Benicar, wouldn't you be lowering the inflammation that prevents IPR. Ok, that part I think I understand.
But the second part confuses me then, if that part is correct. How/why would you think more sun causing more inflammation would cause more bacteria killing? I would agree you would be more symptomatic from more sunlight but not kill more bacteria, right?
TIA
|
jcwat101
Research Professional
|
Posted: Wed Oct 10th, 2007 02:46 |
|
October 9, 2007
Currently: Benicar 40 mg q8h, 25 mg mino + 1/4 of a mod. phase two abx (not the same one I did in the first year)
Summary: Been on MP nearly 3 years (but might subtract about 4 months, due to some breaks).
Have done Mino to full dose, then modified phase two to full doses.
Did one 3 abx combo by adding another modified phase two antibiotic, started very low and only built up to about 1/4 of full doses.
Phase two starting at around 1/32 of phase two abx, reaching to 1/4 of phase two abx.
Then added another antibiotic to the Phase Two ones, for a 3 abx combos, starting very low, e.g., 1/32 and not reaching anywhere near full dose (see below, as possible reason why not moving up to higher doses as easily as some do, despite being on the MP for a while).
Briefly did another two antibiotic combo at low doses involving another antibiotic I never had used.
Then on to current two abx. combo.
I'm still progressing fine. I just wanted to mention a few things I have experienced recently.
Supplement Sensitivities
I mentioned earlier how I had started to switch to a couple of supplements as they were less allergenic for me (non IgE sensitivity), but I just wanted to report that I have become sensitive to them. I switched to these because they cross reacted less with chlorogenic acid (see previous posts in this thread relating to that). But it seems I need to remember, when it comes to supplements I shouldn't stay too long on one, but should switch every few weeks or so. Or at least I should test them more often (see previous posts where I mention how I do that).
Anyway, I now find that I have become much more sensitive to the Solaray food carotene than I am to some other sources of Vitamin A/carotene I just tested (like Bronson beta carotene and Thorne dry Vitamin A). I suspect that my new diet low in chlorogenic acid and starchy foods has caused me to be less sensitive to the Thorne and Bronson ones, than I was previously, so I will go back to them, if I need any. But now I am starting to eat more vegetables more regularly and will probably soon discontinue this category of supplement.
I also find now that I have become very sensitive to the Twin Labs magnesium oxide that I have been taking for several months and so now I will go back to Solgar magnesium chelate and Thorne magnesium aspartate. The sensitivity I had developed to them has gone as I have reduced the chlorogenic acid sensitivity.
It is interesting how I went through a worsening of symptoms during the days following my stopping the magnesium oxide (e.g., diarrhea, nervousness, sleep disturbance, heart rate increase especially after bowel movements). It occurs to me that if I didn't have so much experience with these delayed type sensitivity withdrawal reactions, I might be confused as to why I was having the symptom increase. The symptoms peaked a couple of days after stopping the magnesium oxide and have been declining on the third and fourth day. Today, I am feeling a tendency to headache and achiness at times, but nearly as bad as I used to have. The test I mention in earlier posts, however, makes it very clear what the cause of these symptoms is.
I'm going back to my Solgar chelated magnesium and some Thorne magnesium aspartate and may alternate them. Since they are absorbed better than magnesium oxide, I find I have to take significantly more of these forms of magnesium to get the effect of preventing constipation, but I find it does still work. I have also decided that my food sensitivities have declined enough that I am going to increase fruit, vegetable and nut consumption, so I am hoping I can phase out the magnesium supplements altogether.
Supplement Effects on Immunopathology
I thought I should mention, after Paul's experience with vitamin C over the last 3 years, I decided to see how vitamin C affects my immunopathology (see his posts and mine at: http://marshallprotocol.com/forum35/922-25.html ). I thought I might as well do the experiment, since I have a good way of measuring my immunopathology (see my previous posts on that) to test whether or not his experience would be unique.
I found that 250 mg of supplemental vitamin C definitely increased my IP reaction and 750 mg increased it more. I don't know if this would have occurred pre MP -- I don't think so, but can't be certain. I used to take fairly large amounts (like 3 grams) and didn't notice anything.
Anyway, this should not be important for most people. One should just eat a healthy diet to get a good level of vitamin C. But I thought I would mention it, in case someone was tempted to continue supplementing vitamin C at levels much higher than the RDA. But of course, I can't be sure if others would have the same effect that Paul and I have had.
I decided to test Vitamin A and Beta carotene and found on the two separate tests that they reduced my immunopathology. The amounts were fairly large on the two tests, more than one would be likely to get in the diet.
I tried 400% 20,000 IU of the daily dose of carotene (Solaray food carotene) and it decreased the Herx noticeably and the effect was present after 4 hours, lasting at least 16 hours and disappearing by 24 hours.
I then took, on another occasion, the dry vitamin A from Thorne (more than I intended) -- 50,000 IU. It had a similar effect, with a significant reduction in immunopathology 6 hours later. However, the peak reduction in immunopathology occurred about 20 hours later and the effect was gone by 30 hours.
I recall Trevor said that pre MP he used to use beta carotene and Vitamin E to palliate symptoms. So, this is similar to what I experienced, I would suspect.
However, for myself, when I tried 800 IU of Vitamin E natural mixed tocopherols, in another experiment, I detected no change in immunopathology. Same when I took extra zinc (about 35 mg). But others might differ and I don't advocate supplement use, particularly in these large amounts.
The results for Vitamin C and A, in any case, support the MP view that supplements can alter levels of immunopathology and thus one should just stick to a healthy diet.
Immunopathology
If one looks at the top of my post, they might note what a low levels of antibiotics I have been spending most of my time on in Phase Two and Three. Except for the first year, when I reached the maximum dosages without much problem (but I still went pretty slowly), I have found that I have significant immunopathology reactions to fairly small doses, which might seem surprising after so long on the MP. One might assume that later in the MP, one would be easily reaching the top dosage levels of antibiotics, but that doesn't seem to be the case for me.
It may partly relate to my very long time at a quite high level of illness prior to the MP. But I think it is also may be related to less blockage of the VDR as occurs later in the MP when the bacterial load has been worked down a lot. My immune system is working better at killing bacteria on its own, than it did earlier and less antibiotic is needed. The VDR helps the body to produce AMPs (natural "antibiotics").
If I were to not realize this and try to push quickly to high dosages, I think I might have run into a lot more trouble. It has worked best for me to start at lower doses than usual often times.
I find there is also a tendency to become more symptomatic more easily with sun exposure and vitamin D, due to a reduction of VDR blockage. This is because there are less bacteria producing VDR blocking substances and my 25D is negligible on my last test (<4), so it doesn't block the VDR to any extent.
With a much less blocked VDR, it is easier for 1,25D that is produced when exposed to sun or ingested vitamin D to quickly add to the level of VDR activation and thus contribute to immunopathology. So, for some people, this suggests that a different type of sun sensitivity can occur late in the MP. Early on, it is typically due to hormonal effects, but later, it seems it can be due to stimulating bacterial killing. At least that is my best interpretation of my experiences.
But, I am lucky that I can use zinc oxide and/or keto cream to inhibit this effect adequately. Not everyone may find that to be true.
As I mentioned above, I used to be sun sensitive for a different reason -- and that type of effect seems to have gone for me when I changed my diet to reduce chlorogenic acid sensitivity.
Reenie asked about the Benicar. I have always found that for me, the VDR activating effect of increasing the dose of Benicar was large enough to outweigh its palliative effect (though I feel sure palliation was occurring too). I think there have been a few others like me out there, who find that increasing Benicar doesn't seem to decrease their symptoms, but even increases them.
We all know VDR activation helps kill bacteria, so for me, currently, I believe that is the effect occurring if I have sun exposure in which some part of my body is not protected. And also I get greater VDR activation when I increase Benicar.
Joyce Waterhouse
Last edited on Wed Oct 10th, 2007 05:30 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
|
jcwat101
Research Professional
|
Posted: Wed Oct 10th, 2007 05:35 |
|
I thought this article I wrote for CISRA's online newsletter might provide information that helps some of the sicker folks on the MP. Even if you think you can't concentrate well enough for a book on tape, I find that one can usually find some type of book, at least some of the time, that one can concentrate on well enough. And if one's mind wanders, one can read it again, or just rewind at certain points.
Joyce
Alternative Sources of Books on Tape
by J. C. Waterhouse, Ph.D.
Books on tape have been my one bright spot and saving grace through 14 years of being ill and often bedridden with CFIDS/fibromyalgia. With all that this illness has taken away, it has been wonderful to find a way in which the illness can give something back to my life, that is, the opportunity to spend time with books, while not expending any of my limited energy.
Books on tape have been a marvelous coping tool, which I have used in a variety of ways for different moods and different purposes. At times of anxiety and stress, they have helped me keep calm and distracted from my worries. By concentrating on a soothing, less stimulating book, I can focus my thoughts and drift more easily into sleep. When driving or waiting for appointments, they entertain, when feeling low, spiritual books uplift me and put things into perspective. When I need more stimulation and my concentration is poor, I choose books with an absorbing story and simpler language. I can avoid thinking about how tired I feel when I am doing minor daily chores, by listening while I work. At times, I can become so absorbed that I feel like I have been on an adventure, like the days I spent, in a sense, in the South Pacific, while reading two of Herman Melville’s classics, Typee and Oomoo .
As often as I can, I choose a book that I can learn from, like a biography, travel book, literary classics, or historical novels. I have largely filled in numerous gaps in my education in this way. I make up for the fact that my memory and concentration are not great by listening to some of the more valuable books twice. On the whole, these books have kept me from feeling that my years of being ill were a total waste of my time. In fact, I suspect that from the point of view of learning, I may look back on them as the most valuable years of my education. In a similar way, the noncommercial programming on public radio stations have helped entertain and inform me with news, culture and books, since I don’t have the energy to read newspapers or magazines. In most areas you can find public radio stations on the 88-92 area of the FM dial. I even find I can tape public radio programs that are played in the middle of the night by setting the VCR to the Community Access T.V. station that plays the public radio station overnight. On the whole, I suspect that from the point of view of learning, I may look back on these years of illness as the most valuable years of my education.
For several years I borrowed the books on tape from the main library in Knoxville, where I lived. Some libraries have good collections and they will probably send them to a local branch where it is more convenient for you to pick them up. There are also a number of companies that rent them. They send them to you in the mail and rental fees range from about $14.00 to $20.00 or more (e.g. Books on Tape, Inc. 800/626-3333). These tapes can be played on any regular audio cassette player.
The best way that I have found to obtain books on tape, however, is through services designed to help people with reading disabilities. One is eligible if one is too fatigued or disabled by illness to read or for some who find their chemical sensitivities to ink are too severe, and can get a physician’s signature verifying this. The first service is Braille Institute (800/272-4553). To apply, call and ask for the number of the Braille and Talking Book Library in your area and then request the form for the physician to sign. Then send in the completed form and request your first books (do this immediately because this puts you on the waiting list for tape machines). Unfortunately, there is one drawback at present, and that is the shortage of the special tape machines necessary for playing their 4-sided, slower playing tapes. One may have to wait 1-2 months before a machine is sent to you free in the mail (see below for how to purchase a small tape player). But once you have the machine, thousands of books are available to you. You can request various catalogs for book suggestions, or just have a reader advisor fill your order or help you choose over the phone. The tapes are recorded by professionals who often do various voices, so that sometimes it seems like a radio drama. Everything is free, including the postage.
If you really want to get seriously into educational books, the best source for tapes is Recording for the Blind and Dyslexic (800-221-4792). They require a fee of $50.00 to enroll, plus $25.00 per year, and do not loan you free tape machines. But if you have the Braille Institute machines, they play their tapes too. You can also buy a small portable, rechargeable 4-sided tape player for $100-$200. One can vary the speed on all these machines, so if the reader talks too fast, you can slow him down considerably. Their readers are not professionals, but volunteers, but the choice of books is fantastic. The service is really designed to allow the blind and dyslexic to get an education more easily. They will tape anything one requests if one donates two copies of the book. For me the service has been valuable for obtaining medical textbooks to help me research my illness. I have also found philosophy and history books I was interested in, and have also listened to several on writing. I believe some of these books will help me in pursuing a career after I am well. They also have recently developed an online catalog that makes finding the books you want much easier (http://www.rfbd.org)
I know that books on tape may not be as important or enjoyable for everyone as they were for me. For one thing, for some people, and at some times, the books may be hard to keep one’s attention on, or they may make one sleepy. So I would suggest first trying some from the library or renting a few, to see if they suit you, perhaps for even just an hour or two a day. But if you are like me, you may find that they allow you a respite from and even a sense of victory over your illness that is hard to find elsewhere.
Braille Institute of America | Home
____________________
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
|
jcwat101
Research Professional
|
Posted: Wed Oct 10th, 2007 15:26 |
|
October 10, 2007
I want to add a little more to my first post from yesterday on some diet related things that affect the strength of my immunopathology reactions (IP). These effects may not be true for everyone. The reasons behind these effects are related to what I discuss in previous posts and links.
Things that increase my IP reactions:
probiotics including yogurt with live culture (effect lasts about 6-7 hours at the most);
a low starch/sugar and soluble fiber diet (low in grains, potato, and high fiber beans, low in soluble grain based fibers like psillium or oat bran);
ingested vitamin D, sun exposure (see above post -- for people early in the MP, sun exposure more typically only causes hormonal fluctuations rather than IP from bacterial killing);
eating a meal without any starch/sugar/grain or legume type of fiber;
eating a snack of fruit or some nuts without any starchy food along with it;
eating a meal that includes fat and protein causes my IP to increase some for the first 90 minutes after eating, but if there are starchy foods with it, the IP will decrease 2-4 hours after the meal.
Things that decrease my IP reactions (the effect of these things begins about 30-60 minutes after and peaks 3-6 hours later, disappearing 8-12 hours later):
eating starchy foods or foods with sugar, especially without fat or protein;
taking a fiber supplement;
milk of magnesia (though it increases other symptoms for me);
drinking tea (either decaf. or with caffeine) -- see previous posts above for more on chlorogenic acid
--however, if I do much of these things, after a while I would probably become too sensitive to chlorogenic acid and related substances once again, but if I only use these methods of reducing my IP occasionally, the sensitivity is not an issue (and most people would not have the same tendency to sensitivity that I have, anyway).
Joyce Waterhouse
____________________
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
|
jcwat101
Research Professional
|
Posted: Sun Oct 21st, 2007 16:51 |
|
Anxiety/worry
I wanted to mention something I have found recently related to anxiety/rumination/worry/obsessive thinking and food sensitivity reactions.
I was having problems occasionally related to worrying too much about something. I think this tendency worsened with one of the antibiotics (modified phase two) and I know that it has improved, on average, with the MP.
But lately the reaction did not seem to relate much to antibiotic dosages like most of my symptoms do. I realized that the worrying would occur during a particular phase of a food sensitivity withdrawal reaction and I was able to tie it to a point in the reaction when my mind was still over active and my muscles very tense, but when I think my cortisone and adrenaline were starting to decline. I read about a study that showed that people with higher cortisol didn't tend to brood as much as those with lower, BTW, and this would agree with my experience (I believe the food reaction sometimes increases cortisone and adrenaline during the reaction).
And the worrying thoughts would also tend to occur just before and during mealtime, which I think may relate to tension in my abdominal and pelvic area muscles that may increase near that time (and my blood sugar may be lower, too, just before the meal). So, now, I am better able to recognize when the first negative, worrying thoughts pop up and prevent them from increasing, by resting for a while with something to distract me (books on tape, while lying down for a couple hours is helpful for me).
I also should mention, regarding the blood sugar, that years ago, I also used to be much more prone to anxiety and it was reduced quite a lot by lowering my carbohydrate consumption (I had been eating a couple cups of rice at every meal). There is a term mentioned in some medical textbooks, pseudohyopoglycemia. The blood sugar is not truly abnormal, but in some people, when it gets below a certain level, adrenaline is produced that can contribute a lot to anxiety. Sometimes this happens during the night, too, leading to disturbed sleep and night sweats. Anyway, eating more protein and less carbohydrates helped this for me quite a bit (see above links in this thread).
Joyce Waterhouse
PS I have mentioned that my food reactions are much less due to the MP. But I do still have some food sensitivities. I actually eat foods I am sensitive to sometimes on purpose (I will explain why later).
Last edited on Sun Oct 21st, 2007 21:54 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
|
jcwat101
Research Professional
|
Posted: Sat Dec 15th, 2007 17:14 |
|
I was just going to mention a refinement to my post on Oct. 10, 2007.
I found out that it is only the fat component of the meal that causes the temporary increase in immunopathology reaction for me 45 to 90 minutes after a meal. If I eat an essentially fat free skinless boneless chicken breast and no other fat, I do not get the increase in IP. I think it probably relates to the bile acids produced after fat consumption.
Joyce Waterhouse
____________________
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
|
jcwat101
Research Professional
|
Posted: Thu Dec 27th, 2007 21:00 |
|
I'm not sure when I'm going to catch up on my Progress Reports, but I thought I would mention that I am currently on phase 3, on the combination Trevor thinks is particularly good to spend a long time on. I started on lower than usual starting doses for the two non-mino antibiotics (1/4 the usual starting dose). I have often needed to start and stay at lower doses than many other people and go quite slowly with increases, so I decided I better be cautious -- and I'm glad I was. After months on this combination, I am only now at the dosage level at which most people start.
I wanted to mention that I went through a period where my white blood count (WBC) was lower than it had been before (2.7 on 3/26/07 and then 3.3 on 5/29/07) and it took several months of reducing the antibiotics and keeping the immunopathology lower to get it to normalize (back to its usual level in the low normal range). This combination must have really targeted the WBCs, since this had never happened before on other combinations. One isn't supposed to let it get too low, or one risks making one more susceptible to acute infections -- See: My white blood cell count is low. What should I do... My neutrophils were low too (1300 on 3/26/07 and 1600 on 5/29/07).
Currently, I notice this combination is hitting the mental symptoms (mood as well as memory/concentration) and fatigue particularly strongly for me. And the symptoms are not declining as much between dosages. I am thinking I should probably check my WBCs again before too long. I had switched off this combination for a while and only have come back to it in the last few weeks.
For those who want the details about which antibiotics and dosages and who are in Phase Two/Three, see:
Joyce in phase 3 - Phases Two and Three Forum - PROGRESS REPORTS [members on M
As I think about it more, I think I will lower my antibiotics next cycle. I don't know if things are just getting stronger, or if some light exposure a couple days ago has increased them, but I think I will lower the antibiotic in any case so as not let these symptoms get too strong.
I just remembered, there is something else I should mention. I was not taking Benicar at the time of the above two tests. I had to stop for a while, as I discussed in above posts due to my tendency to a Benicar cross reaction with some foods (rare, and as I found, reversible by avoiding certain foods and other items). Although for most people, Benicar is noticeably palliative, and taking it more frequently decreases immunopathology symptoms, for myself, I have never noticed that palliative effect since the VDR activating effect has dominated for myself (in fact, skipping a Benicar has always decreased symptoms for me).
But I wonder whether Benicar would have palliated my low WBC. It will be interesting to see as I monitor my WBC in future. Of course, others have had too low a WBC on occasion as part of immunopathology even with full dose Benicar so just being on the full dose doesn't automatically ensure normal WBC levels.
I will be staying on the full dose Benicar now except on rare occasions.
Joyce Waterhouse
Last edited on Fri Dec 28th, 2007 00:07 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
|
Kas
Member in Phase 2
|
Posted: Thu Dec 27th, 2007 21:42 |
|
Joyce,
I also seem to have the same issues. My WBC is now 3.7 ( 4-11) and seems to be dropping. I am sure it will eventually go back up if I keep on going very slowly and at 1/4 dosage of the recommended second abx and only 25 mg of mino for a few more cycles. I also have to watch my kidney and liver tests, as the IP can cause those results to become worrisome to my MP doctor. I am going to try and up the second abx minimally next cycle ( Jan 4) and see what reaction that brings and I will ask for the white blood count to be monitored periodically, too. I declined the flu shot, so do not want to be open to all the winter infections flying around this neck of the woods right now and I will be travelling overseas in Feb and need to stay well. I also find that spreading the dosing out, works much better for me, too. I can control the IP and lead a normal life this way, for the most part.
So, it appears tht some of us need to go VERY slowly and carefully and will be on the MP much longer than others, but what the heck, we are killing those bugs and getting better as we move along at snail's pace!
Thanks for making me realise that I am not the only one who needs to take things so slowly to make the MP viable for me.
____________________
Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
|
jcwat101
Research Professional
|
Posted: Fri Feb 8th, 2008 04:37 |
|
I thought I would mention that I am doing a trial with caffeine pills (only 50 mg before breakfast and at noon). The beverages with caffeine are still a bit too allergenic for me. See my Feb. 3 post here for more details:
Chlorogenic Acid in Coffee is powerful Immune modulator -Dr Marshall's Perspe
I think the small amount of caffeine is helping my mood and alertness. The stimulatory effect seems to make up for the decline in stimulatory effect from my food sensitivities (which have lessened a great deal). The caffeine effect is more controllable too and doesn't have the other negative effects of the food reactions.
I always was thinking about what Kas posted above, about us needing to lower our antibiotic dosages. She remarked that it may take us much longer to get well. I don't know if we can be so sure of that. It may just mean our immune systems are getting unblocked sooner. We don't need as much antibiotic to get plenty of bacterial killing, but I'm not sure we will necessarily take a lot longer to get well. I guess we will see  -- anyway, I'm happy with my progress and it will take as long as it takes.
Joyce Waterhouse
Last edited on Fri Feb 8th, 2008 04:46 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
|
jcwat101
Research Professional
|
Posted: Thu Apr 3rd, 2008 00:23 |
|
April 2, 2008
I wanted to say that I feel quite well a lot of the time lately and continue to make progress. But it is interesting that when exposed to sun, I can feel really bad beginning 2 to 3 days afterwards and lasting for a week. I’m doing well, but don’t think I would be if I weren’t getting sun protection.
Initially, I had a rapid onset sun reaction that disappeared quickly and it included a faster heart rate. Then, I went through a period of no noticeable sun reaction. Now, I think, because my VDR is less blocked due to killing a lot of bacteria, I am again reacting to the sun. But the reaction is much different and if I hadn’t done some experiments and hadn’t been avoiding the sun so much usually, I would not have figured it out, due to the delayed and changed nature of the outdoor light reaction (present even if cloudy or in the car).
Currently, I am experimenting with using a coat of Kabana (20%) sunscreen at bedtime and another coat in the morning and I find it is helping me deal with necessary outdoor time better than the one coat or the lower % zinc oxide. Sometimes I even use a third or fourth coat. It stays on until it is washed off. This allowed me to spend about 3 to 4 hours outside with my niece the other day (also wearing hat, long sleeves, sunglasses and heavy gloves). The label says one can reapply as needed.
Different people might require different amounts and it would also depend on how much one is outside and other factors relating to one's sun reactions.
But, if one is having any trouble with their level of IP reaction, I suggest really re examining your outdoor time and protectio | | |
