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Joyful Foundation Staff 
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After the early adopters are off enjoying their new, healthier life... those of us in year 2 or 3 are asking: "when will enough be enough?" See this article in the knowledge base: Length of the Marshall Protocol. There are examples of some who thought they were 'done' with recovery from Sarcoidosis, but it seems the most recent thought is that staying on the Benicar fairly frequently is important for more years than originally thought. And yet there is one case of a young man who treated his psoriasis for a year and stopped. (Not a good general example as he was on it at his mom's request and didn't really get the science part of it.) Some use the MP like a recipe out of a book and think that all they need to do is finish all the antibiotic combinations and then they can say they are 'done'. I don't agree. In my case, I have so much IP on Benicar alone that I am thinking that I may be using Benicar for a good long time with a gentle increase in functionality. (Or at least that is the movie playing in my head.) In the case of Sue Andorn, she is looking good here: Interview with Sue Andorn – Lyme, Babesia. It looks like Gene is still working through his recovery, but very happy to remain on the MP as long as it takes, especially considering he has beat the cancer diagnosis: Interview with Gene Johnson – sarcoidosis, bladder cancer. So, how would you, today, choose your end point? What symptom has to be resolved before you are willing to start to 'coast?' Do you think that might change after you get further along? |
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Freddie Ash Member 
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HI JOYFUL & ALL This is Fred in WV. First thing that I want to say is that I am in it for the long haul, ever how long it takes. When I first found out about the Marshall Protocol they (at this site) were talking about 18months to 3 years to do. So in my case I thought that with my age it would take my 3years to 5 years, becasue I would have a heavy bacteria load than most. I have now been on the Marshall Protocol for 4 years plus 120 some days now. So I am here for how ever long it takes. I think the problem that is most to cure is my heart problems and some calcification problems (make sure this stops). I have come a long way in my heart symptoms clearing up. It will take some time for the calcification to clear up. I am not sure how the calcified lymphs will effect my cure becasue I saw where Dr Marshall said something about the removal of the nodes that we needed them for our quicker recovery. So I am not sure if the calcified lymph nodes will slow my recovery or not. Joyful ask, "DO YOU THINK THAT MIGHT CHANGE AFTER YOU GET FURTHER ALONG?" Yes, things do change as we go a long in our recovery of these TH1 diseases. We find better ways to do things and ways to improve the out come of these TH1 diseases. So I am in it for the long haul, ever how long it takes. I want my heart problems to be cured. And yes, things change for the better all the time here at the Marshall Protocol site. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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Cynthia Schnitz Board Staff 
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Well, in my recent post in "Becoming less light sensitive" I mentioned that I expected to be "well" for all intents and purposes at about 2 years out on the Gaussian curve of less and less bacteria in my body, tho will keep up the Beni much longer. I am nearly at max Phase 3, and will be at about 11 months. Sheila-Fl once asked me how would I rate my illness preMP on a scale of 1 to 10, and my answer was a zero. Well, of course, in retrospect, I would call it a 2 or 3. Most ills were considered the usual aging, and the swelling in the pads in my back was kept down with omega three oils. The inflammation in my hips was unrecognized because of the lack of functional nerves there, and the lack of hip range was attributed to my back problem, as that is where the pain occurred if I tried to pull my knees up, and as long as I didn't try to pull them up, there was no pain. Without the omega three oil, I suppose my rating would have kicked up a point or 2 (or more, but I never would go long enough without the oil to find out). I don't think I would have come to the MP if it were not for a Calcium problem that no doctor could ever 'see' and after 13 years of it, it only got very marginally better, and I had to ask myself what was the end game, and could, of course, find no answer. So, maybe it would be interesting to get some feed back from others on their sense of what they would have rated their preMP illness and how they are progressing thru the MP. The degree of bacterial load is certainly going to affect the length of time to recovery. Cynthia |
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expate Member 
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Good thread. I will say that when I began the MP, I thought I would be pretty much finished with it in a single year. I was not terribly symptomatic. In fact, my diagnosis was "hypervitaminosis D". I'm now in month 14 of the MP. One of my main symptoms (that I did not even know was a symptom), hot flashes, improved dramatically just in the 3 months of limiting vitamin D in my diet before I began taking Benicar or wearing NoIR's. Another symptom, which again, I did not know was related at the time, tingling/numbness in fingers, stopped the very first day of taking Benicar. It took probably about 9 months for the accompanying pain and weakness in my wrists to be totally eradicated, but it totally went away! But I really do need to figure out how much longer to go with this. I still am light sensitive, but not horribly so in comparison to where I was. I do not use NoIR's indoors and have even begun opening the heavy curtains in some rooms at some times of day, leaving the blinds closed. This is a great relief to my husband, who has borne my need for darkness valiantly. I know that I still have some distance to go: - some skin issues pop up - I still have tinnitus (better but not gone) - I'm wondering about uterine fibroids and what might happen there (they no longer cause me problems due to treatment before going on MP, but I'm kind of hoping they don't "remodel" as i don't know what that would do to the "embospheres" used to block their blood supply) - I still have some gastrointestinal ups and downs that I expect to get better - Still having some bladder IP - There's a spot of tendinitus on my ankle that I'm kind of using as my MP thermometer... when it goes away, I'll be done. But that's kind of silly. It seems to get inflamed perhaps with my Z cylce and not in relation to use. - I definitely want my energy level to be better Otherwise, things I wish would get better that others have reported getting better: - eyesight - feeling of well being (I've been off my anti-depressant since just before beginning MP and have done amazingly well... still, there's more I could benefit in this area) - consistent mental accuity OK, I'm going to stop blathering now. I guess my biggest hope is to be able to dress normally again. I've already begun to wear sandals (Yay!) but still use gloves and long sleeves. I do occasionally wear skirts that leave a bit of leg out. However, I still spend most of my time indoors with only 20 minutes to an hour outside most days. I suppose my goal is to be able to go on vacation next summer (to Greece) and be able to enjoy myself without too much inconvenience. Whew,  dette |
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eClaire Member 
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Given that I was a premie (see research on higher amounts of bacteria in amniotic fluid leading to premature birth), had ear infections and allergies as a baby, began having intestinal issues at 5, CFS symptoms at 8, am now nearly 54, and felt close to death when I started the MP, I looked at the estimates, which included about 5 years for those with CFS, and I figured 6 years. Now, three years in, I am hoping to be able to be in school by year 6, and I hope to be working by year 8--that would be five years from now. However, if I have to be on Benicar for 15 years to make sure my immune system is not so overloaded that it begins to spiral down again, I will do that. So for me functional, having as much energy as I had 10 years ago (about 4 years before I became totally disabled), is the goal. That would be cure enough regardless of the meds I am on. Right now, my symptoms are so much more tolerable that if I had that amount of energy, I would feel better than I ever had in my life. The reduction in all my other symptoms is incentive enough to keep going. ... and my light sensitivity is getting better all the time--the house seems positively pitch dark at night now with the little night lights on in a few places to help my housemates negotiate in the dark... frankly, I don't know how they've been doing it. Claire |
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John McDonald Foundation Director 
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Maybe forever. When I started the MP it was thought to be a 2 year program, more or less. Phase 1 and 2 to cure what ails you and phase 3 to clean the cupboards and under the furniture. And I was already in credible but incomplete remission from the Road Back antibiotic protocol. That is, I had much of my pre RA life back, but I still had issues with fatigue, constipation and residual, mild pain in my fingers. I was better but not cured and I had plateaued on AP, no more progress. It took me a quick year to get to phase 3. In MP phases 1 & 2 got massive herxing in all sorts of tissues and I had dramatic wonderful improvements. But by then we were realizing that phase 3 was more than clean up. Lots of my early adopter friends were getting their MP butts kicked in phase-3. Me too. I have been on phase-3 for 3 years and I am still on half doses, 1/4 Zith, 50mg Mino and 1/4 to 1/2 of a clindy. Arguably I am half done with phase-3 based on how much dose I am taking. But I could stop MP tomorrow, or continue for the rest of my days and be at peace with either decision. Phase-3 was very, very hard for me in the beginning. My dominant symptom was neuro-herx; crap cognition and/or inapproprate emotions. I had killed very few microbes in my head on phases 1 & 2. I had very little RA after mid phase-2, still have very little. But I was shoveling microbes out of my mind on phase 3. My neuro herxing on phase-3 was severe, career and marriage threatening, and it lasted about 2 years. I even had grand mal seizures one evening. I babied my doses so that I could keep my job and my family. But the neuro stuff mostly cleared about September of last year, about a year ago. I took a long MP break to take stock; and to decide whether to continue. I decided that I like, I really like the gains I am making on the MP. I also like being smart and effective again. God, I have missed my mind. I am 97% or so cured of the RA that brought me to the MP, but I would like to go on improving. So I have reasoned that provided I have, oh, say, 85% to 90% of my faculties then I am willing to stay on the MP forever. That is what I am doing. I am trying to maintain a baseline dose that is well short of tolerable herxing. Instead I am now dosing for barely detectable herxing or perhaps very workable herxing. I am doing that at just about the exact same dose that was turning my mind to mush a year ago. Now it elicits modest herxing all over the place elsewhere. It shows up as light sensitivity, or some stomach upset, or as muscle fatigue when exercising, or maybe a word salad day, though not often. Lots of things. Sometimes some RA inflammation for a few hours. I can live with all of that. I can live with it forever as long as I can dose down if I need to be more capable or effective for some reason. So, I don't know, but maybe I will be on a minimal MP for a long time. And I am happy with that.  -john |
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edj2001 Member 
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The more I read about bacteria and the symbiotic relationship we have I don’t think we can ever let down our guard. Aseptic lab technique requires a ventilation hood, UV light (before and after experiment), along with many other precautions to prevent bacterial contamination of the test just from the atmosphere. This points out that we are surrounded and covered with bacteria. It is not a stretch to say the internal body is also contaminated. We need an "industrial strength" immune system for life. Gene |
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eClaire Member
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Oh John, I find your post so encouraging. I used to be very bright. Now, I read so many comments on the MP thread that are not only way over my head, but I couldn't figure them out if I were given chemistry and biology lessons at home every day for eight hours straight. (Not that I would necessarily expect to be on the same level as Marshall! And I am happy to be able to get the gist of what is being said... enough to know that I am on the right track.) My brain, however, is just no where near what it used to be. Yes, I miss my mind more than anything. Oh, I've accommodated and there are careers I could have with the mind I have left (once I have some energy) and I'd do just fine in them, but my mind was my pal. I'm an introvert and I could entertain myself for hours contemplating one issue/problem/challenge or another. I was never bored with my own thoughts; most often entertained. (As you can imagine, grounding me as a child was not an affective inducement or punishment. )So I have no trouble with the MP for life and continuing to move upward and onward! Count me in on having an industrial strength immune system for life! Thanks for the encouragement. Claire |
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Deb Grabetz Moderator
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John, I'm with you! When I started the MP I thought I would barely make it through the first few weeks. Every inch of me was responding at different times with different IP. I was sure I would just bump up my meds and "move on"... As I've settled into a very long haul through Phase II, I realize that I may be on the MP for much longer than I could have expected and I too am ok with this.  I pace myself also in order to manage working a few days a month and living somewhat of a normal existence. There is always a lot going on with my body that I have learned to "cope" through. I have seen big improvements with taking on a project, like a recent family reunion that I organized but also realize after I go through a sort of recovery period with my body after I do such things, that would seem a normal life to others. I have no doubts with the level of illness my body is at, that I may be one of those on the MP for years. Yet, what improvements I have seen have been huge strides for me. With this I realize how fortunate for me and others, that we will have these years to be on the MP. I did not come into the MP thinking that it would take years---but totally expected to breeze through the protocol and be well after a couple of years. The realization that this process was not going to be an easy or quick fix for me, has sunk in over the last few months and a sort of acceptance kicked in on it's own-- the MP is now a part of my life that I'm very grateful for!!!!! |
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k Member
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Well mine is a slightly different issue. I am on the one hand happy to stay on the MP forever. (Although I would really like to become not highly sensitive to the sun!). My issue is, I wonder if I will be able to have children? I'm 33, almost 2 years into the MP. Granted, pre-MP, I was too sick for this to be considered a possibility. But now I wonder, might I become well enough to have children before my biological clock goes kaput? (Note, biological clock is not the only issue here, I don't have a man yet either! (I know I know, you don't technically need a man these days anymore, but a man would be my preference) I know Dr Marshall did some work on fertility earlier on in his career. I am fully aware that MP and pregnancy are contra-indicated. But I do wonder, if I did happen to meet the man of my dreams or even a man (I have much more realistic expectations these days! ; ) ), how long might I need to be off the MP before trying to get pregnant? And are there any adverse risks from having been on the MP? (I've no doubt that having been on the MP would have plenty of benefits - less CWD passed on etc). Anyway, this is all highly theoretical at the moment as despite my efforts at dating, an eligible bachelor is no where to be seen on the horizon! cheers, k |
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expate Member
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All those questions aside, I'm 99 % sure Benicar and pregnancy are definitely counter-indicated. |
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k Member
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Yes, they are. That's what I stated in my post. MP and pregnancy (and nursing) are contraindicated. |
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Cynthia Schnitz Board Staff
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Somewhere it is stated that a cure is pronounced when all the the disease symptoms are gone and test results are negative. However, I have been thinking about my idea that the on set of disease symptoms is likely caused by bacteria reaching the quorum sensing limit (do a search on quorum sensing if you are not familiar with this). If, in fact, it is such that we don't get symptoms until the bacteria reach a certain level, then the corollary has to be that we are not really free of the bacteria when we no longer have these symptoms. So, for determining when we are cured, I would expect that we will need to maintain the MP well beyond the point of being free of symptoms. In my progress I now think of a symptom clearing up as that point when the level of the causative bacteria for that symptom drops below the quorum sensing level. Stopping the MP too soon may just be buying time until the symptoms are back again. I guess the real time to stop the MP is when there is absolutely no way to stimulate IP with any amount of ABx. Stage 5 would seem to be a help here, but I would still go back to testing with the ABxs after Stage 5 seems to die down just to be sure. Cynthia |
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Joyful Foundation Staff
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k, a couple of women have come off the MP to have babies. I will try to find the links to their progress reports. Meanwhile, try this page: Pregnancy and fertility. |
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k Member
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Oh thanks so much Joyful! I didn't know that! I try to keep an eye-out for such people but hadn't come across any! That is good news! Thank you so much! k |
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eClaire Member
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Cynthia, I am right there with you with the quorum sensing. I had always envisioned my body's health as spiraling downward. Each new symptom set may well have been when a certain bacteria reached a quorum. The more symptom sets the faster the overall spiral. I've always thought that health would mean getting to a point where my immune system would be in charge enough to cause the spiraling to reverse (that is, it would be over the hump, the tipping point and able to handle the bacteria in the system). I do believe that point is somewhere before the point of a quorum. Probably a good deal before. Although I was unable to do regular phase 2 last fall, it is my belief that one day I will be able to do that and the 3 abx combos. Even if that day ends up being beyond a stage 5 experience. If the point is tolerable progress, then it doesn't matter if someone does Ph1, mod Ph2, Ph1, as I have done... even if this leads to stage 5 only to be followed by more abx. I have the time (NOW, thanks to the MP) and the will. Claire |
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patrickburke Moderator 
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Hiya, I am in my fith year of the MP, my sixth year of avoiding D, my sarc x rays were deemed "normal" after just a few months of MP therapy. I have done very well, I know that and consider myself very fortunate. I first took really ill in May 2004 and received my sarc diagnosis. I researched the disease obsessively at the highest level and by June that year I had concluded that the only expert in the world that made any sense was Dr Marshall. I knew straight away that he was on the right track and had probably cracked one of mother natures biggest secrets. It was a huge blow to hear the bad news about "herx" but I knew that I had to do it. I knew that after 10 years of zero immune response I was harbouring loads of bugs and that I had a lot of catching up to do. I knew that it would necessarily hurt. It did, I had bad IP, I had bad light sensitivity, I had bad everything but I knew that my body was at last catching up with all those intracellular bugs, killing them and healing, I knew that my immune system was working again. I have watched over these five years as all of my disease symptoms have gone into reverse. My MP history is, May. 04 Dx sarcoid Jun. 04 Avoiding D and light 7. Nov.04 Pulsed M 1. May.05 Phase 1 M 21.Jun. 05 Phase 2 M+Z 25.Dec. 05 Phase 3 M+Z+B 5. Mar. 06 Phase 3 M+Z+C 8. Mar. 07 Phase 3 M+Z+B 7. Jul. 07 Phase 3 M+Z+D 26. Sep. 07 Phase 3 D+Z+C 24. Jan. 08 Phase 3 D+Z+B 13. Feb. 08 Stage 5 no abx Every one of those combinations was a battle, a big battle. You will see that I have been on Benicar only for over 1.5 years. I still get IP  . But I am still getting better  and better and better . I would like to know where this will end and how I will feel when it is all over LOL.My best guess, realistically, based on my past experience, as too how much longer this will take is probably another two years. But that is to be totally rid of all my current IP. Maybe some new ones will appear along the way? I don't know the answer to that and I don't care at all, not one little bit, I am happy! My life, my x rays and my blood work are all normal now. We folk here are setting the precedent for those who will follow and those who are following now. While ever Prof Marshall is here helping people like me with His web sites I will be here too. Death to the bugs .Pat |
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Sallie Q Board Staff 
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wow, Patrick you set off another of my recurrent brainwave sets: given that in theory every cell in our bodies turns over in a seven year period, and allowing that the colonies of microbiota which invade us can prolong life of infected cells so allow 1 extra year................ I guess that for most of us a target endpoint is 7 or 8 years from whatever starting point we make...... maybe even including the pre-MP work some people do with the Minocycline R.A. killer programs (which metaphorically win the first battle but not the war). Many people I expect will have a truly fit enough immune response to come off some time before the 8 year hypothetical max. run on MP I suggest here; as per Claire's post, or for personal reasons such as planning career moves or pregnancy. This comment is purely unaffected by " what you tell yourself, and believe, is then true for you and you act (or think) accordingly".......I am past planning career moves or pregnancy |
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KFaucher Member
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I don't believe in cures, so I guess I see the end point as death. The struggle against a chronic disease is.....well, chronic. That being said, I am now in remission. I have no noticeable symptoms. I have not been on abx for several months. I still take Benicar 2-3 times a day (depending on whether or not I remember the midday one). Future treatment depends on what the future brings. Throughout treatment my goal has not been cure, but getting as much of my life back as possible. I have been more active than many, and was out in the sun (protected) more than most (perhaps all). Although I often paid the price of excess, I also learned where my boundaries were and was able to be as active as possible. When my disease symptoms were gone, I still maintained treatment while it still induced IP. After a few months with no IP I stopped Abx. Will I go back on Abx? Probably. In a few months I may add the abx back in just out of curiosity. Will I stop Benicar? Maybe. I am staying on it for now. Tomorro? Next year? I can't plan that far ahead. Ken "Life is either a daring adventure or nothing. Security does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than exposure." Helen Keller |
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eClaire Member
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I once believed in the idea that our cells renew themselves every 7 years. However, taking into account that cells are dying and new ones are being born, the opportunity for endless cell to cell infection is there, particularly when you see some of the videos of cells sharing microbiota directly with other cells. Unless, of course, olmesartan disables this process by keeping the immune system aware of that sort of thing. Perhaps it does. So for me, I've given up the idea of seven or eight years until we know more. I'm just going to stay on the MP until I have no more IP and then stay on olmesartan alone for a long time after that. Perhaps by then we'll have some idea three olmesartan or one olmesartan a day or one a week will help the immune system keep the bacteria in check (on average... again, I imagine it will depend on the person's personal bacterial load). Claire |
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Juanita Member 
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For me? I don't have a clue. Not one. I walk my MP path in faith that the science is solid and that as long as I take my pills.... some day I'll be zippy again. I just passed my two year anniversary of going on the MP. I can't say I'm a shining example of how this treatment can make your thighs smaller or make hamburgers in under ten minutes (tv commercials), but slowly and steadily, I have more of my mental faculties, which had died a horrible death and I couldn't even do grade two math. I feel more myself again. I have more energy. My MCS reactions to chemical exposures are less intense and last for shorter lengths of time. And the heart arythmea that had stalked me since I was 9 has disappeared. My periods are finally regular and normal again instead of arriving every 14 days to hang around for 10 heavy flow days. I know that there wasn't any other answer for my MCS. None. We hunted like rabid dogs, tried everything that seemed even the tiniest bit reasonable. Even moved the whole family out into the rain forest of the West Coast to live in a cabin with no running water or electricity in the hopes of giving our bodies a break from the world's chemical spewing. The day I found the MP.... I cried. We'd all given up and felt that at lthe very least the middle daughter and I weren't going to reach old age and would never be free out in the world like normal people. So I don't care how long it takes for the MP to work. For us, there are no other solutions. And this is working. It's a slow journey, but it's working. Our middle daughter just started one university class this Fall. One class, but it means everything to us! We were without hope for her and now she's able to take one class. Wow. And so to stay on topic... our idea of a cure is to be taking our pills while we go to school, keep a job, go to the movies, be able to buy our own groceries, and live like regular people. Minus the cigarettes and perfume and heavy cleaners. We had no hope. Now we have hope and the beginning of excellent results. How long it takes to get more.... that is what it is. One of the lessons of this treatment is to let go and let bacteria die. We aren't in control of that. Just in control of staying on treatment until we feel we're ready for what's next. From the bottom of my heart.... thank you, Dr Marshall. Thank you, thank you, thank you. |
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marion villa Member 
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Hi all. for me I guess I would be considering myself kinda cured when this fatigue resolves, and the light issue ,the GI symptoms, and the dry eye. Because all else symptoms are better, no doubt, no swollen joints, no underskin bumps, no skin holes!!, no erithema nosodum, I am not an arthritic lady, you know? I am more like a stomach cramp, dry eyed lady....a fatigued one. but happy at least some days |
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marion villa Member
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Juanita escribió:
Juanita: I couldtn have expressed this things better than you!!! I am crying now you are all right |
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expate Member
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Somehow, it always makes me happy to read your thread... except when you're feeling donw.dette |
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Juanita Member
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Well, thank heavens for that, Odette! If you'd giggled like a fiend on one of my bad day postings......  I love that we can tease each other and share our stories here. Who else understands what and why we do what we do each day? Thrilled to see you post, Marion! I missed you. |
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marion villa Member
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girls!! you are so great. I love all of you very much, and a few mp guys either. kisses and hugs!!! |
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laura1814 Member 
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Juanita and John, I think you both expressed it very well. I have been on the MP 21 months. I will stay on for as long as it takes. My goals are: to have energy, to be at a normal weight without having to worry about hypoglycemia, to be able to hold a job-- no, have a career, to be able to take care of myself, to be able to go out into the world and do the shopping I need to do (not to mention working), to have my brain back, to be able to travel, to not need to worry about light exposure, to be able to perform, to be able to enjoy outdoor pursuits. In an ideal world, my gray would be gone, my hair would be long and thick again, I'd have no GERD or dysphonia, no tinnitus, no hypoglycemia, no pain, no heart disease, and be fertile. I think several, perhaps all, of these are real possibilities. If it takes me five more years or ten more years, I don't care. I know I will get there eventually and be able to have a life, and that's all that matters. Before the MP, I just hoped that one day I would feel better, but I had very little expectation of it. I wouldn't go back to that for anything. As far as I am concerned, I had nothing to lose and have lost nothing from the MP. If I hadn't started the MP I'd still be sick and just hoping. Now I may still be sick, but I've made measurable progress and I'm not just hoping, I know. I am so grateful to have found the MP, and that Dr. Marshall enabled me to find the path to wellness. |
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marion villa Member
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juanita laura all of you guys: Do you notice how disphonia has striken us!!! I have forgot to mention it, I used to take singing classes before MP until one day I suddenly developed a swelling in the throat choking and aphonia...... Id like to be healed about my real voice again and to yell aloud again! |
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laura1814 Member
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I am a singer! Several years before the MP I was diagnosed with GERD and given Nexxium even though the only symptom I had was hoarseness after singing, and very mild occasional heartburn. The Nexxium really helped and freed my voice, but when I started the MP, I quit taking it. A couple of times since then when I have really wanted to sing (like for a big solo in my church choir's concert) I have taken drugs for it, but I am not singing now and so only take ranitidine occasionally when I have indigestion or heartburn, which isn't very often. I would love to be able to sing and perform regularly again. I may try to sing this spring when the symphony is performing Beethoven's 9th but I won't decide until much closer to the time when I can see how I'm feeling and what the rehearsal schedule will be. I've sung it several times so not participating this time wouldn't be a disaster, but we have a new conductor and I don't want to miss out. I've actually been fortunate in the timing as the chorus hasn't performed for the last two years while they've been looking for a new conductor! Sorry for rambling, but it struck a chord. I really miss singing. I haven't sung regularly since starting the MP; the rehearsals and performances are too draining. I don't even play the piano as that is very tiring too.Last edited on Wed Sep 30th, 2009 08:34 by laura1814 |
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Freddie Ash Member
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HI LAURA This is Fred in WV. I am not a doctor or even a singer, just a member in phase 3, but your talking about the hoarseness reminds me about my problem with it. I was wondering how they diagnosed you with it being caused by the Gerd. In my case the doctor looked down my throat and told me my vocal cords were inflamed with the sarc. And then on another time another doctor was checking my esophagus with a light and when he came in to see after doing it ask me if I had ever been told I had sarcoidosis of the vocal cords. So my hoarseness was casued by the sarc effecting the vocal cords. So that is why I am asking how they diagnosed you with Gerd causing it. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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eClaire Member
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Interesting Freddie and Laura about the GERD... my only GERD symptom was rare mild heartburn and hoarseness and my ENT just looked down my throat and pronounced it GERD. Of course, my symptoms got worse after eating and after drinking anything including water. Seems I also had the laying down and the sitting up kind of GERD. I took the drugs and then later they started talking surgery and I stopped going and stopped the drugs and looked for alternative remedies. Then, I read that many people with CFS have GERD and I decided it was just part of my overall illness and I was not going to be someone on a pile of drugs that had their own risks. Then, I found the MP and decided to let the process run its course. While not a singer, I had to give up singing in the church choir before I became totally disabled because of fatigue and general irritability, something so many of us are familiar with. It was driving me nuts that our choir director was choosing pieces so way above the abilities of the untrained voices in our choir, which resulted in our feeling under prepared and embarrassed when singing many pieces, that I couldn't take the stress. Of course, had I not been so tired I probably wouldn't have been so irritable either, and I would have been able to handle the choir director's choices. Indeed, she was open to us suggesting other pieces because all she knew were choral pieces (aside from the standards in the hymnal), but I didn't have the energy to go in search of melodies I thought we could handle to give us the change of pace she was looking for (that is, a change from the standards). Sorry for getting us so far off track! Yes, like most posting here, I am in it for the long haul. Claire |
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Freddie Ash Member
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HI CLAIRE This is Fred in WV. Thanks for your input on the GERD. It seems like a lot of TH1 patients seem to have the GERD and vocal cord problems. I have ran across several with these problelms since I was diaganosed with the sarc back in 1982. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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laura1814 Member
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Fred, my experience was pretty much like Claire's. Actually I asked my choir director if I was doing something "wrong" vocally that was leading to my hoarseness after singing, and he told me to go to the ENT. The ENT looked down my throat and said the hoarseness is caused by little bits of acid from the stomach, which can happen even in the absence of recognizable heartburn. He prescribed Nexxium, and it fixed the vocal problem. I have always had mild heartburn after eating spicy foods, and never thought it was something worth trying to fix with prescription drugs, but the Nexxium caused me never to suffer a twinge, which was nice. These days I only take the prescription drugs if I'm planning to sing. Claire, I can understand that kind of stress. My church choir is actually almost semi-professional. I counted up music degrees once and the percentage of people who have them is impressive, around a dozen in a group of about 40. Sometimes people who just "like to sing" join our choir and become intimidated and quit. (What's worse are the people who really can't sing but think they can and stay! ) But although I number among those with a degree in music, I used to suffer from very bad stage fright and found singing at church very stressful, week after week, and thus even more tiring than it ought to be (it also wrecked courtroom work for me!). I love choral singing though and need to make music in my life, and so it was the one thing I stuck with during all the years of my illness. I knew the group was special and wanted to be a part of it. Anyway, I fixed the stage fright with hypnotherapy about five years ago and then discovered great joy and freedom in performing, including solos. That makes me miss singing all the more, but I am not ready to push myself to the degree I would have to do to commit to go back. I will someday and that just has to be enough for now. It would be too hard physically to go, and I would spend all the rest of my time recuperating from it. I think of the MP as an extended retreat. It is a great relief to not have to force myself to go anywhere. |
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Aunt Diana Member 
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This is such an interesting thread. I had no idea that GERD could be the cause of my hoarseness or total lack sometimes of a voice at all. Is Nexxium allowed on MP? If so, I'll buy some today. Thanks for this information everyone. |
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Carricol Member
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GERD is generally caused by a weakening of the Pyloric valve that seperates the esophogas from the stomach. When it weakens it allows the contents of the stomach to leak through the valve and into the esophagas and sometimes the larynx. I had it for years mostly at night. I was prescribed Zantac and Aciphex to counteract the acid in the stomach. They didn't stop the leakage. It just meant that the contents of the leakage was less acidic and did less damage. I got Bronchitas and some hoarseness also from the contents leaking into my lungs and voice box. The answer I got was that as we age the valve slowly deteriorates, faster in some than in others. I am now coming around to believe that the deterioration of the valve is caused by TH1 pathogens and may be reversable. Last edited on Sat Oct 3rd, 2009 20:10 by Carricol |
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eClaire Member
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Carricol, I am with you. I think, for the most part, GERD is reversible (just as some of the normal aging process is reversible because it is more TH1 related than simply a wearing out) or at least the TH1 related part of it is. I also think that the loosening of the Pyloric valve is similar to what happens in urinary incontinence. And hypermobility syndrome. I think whatever processes are causing the Pyloric valve to loosen is also causing other similar failures in the body; some are more noticeable than others because of the consequences of those failures. For example, many folk may have hypermobility syndrome and not know it because an ankle joint hasn't slipped out yet when walking or their knees aren't hyper extending yet. Doesn't mean the process isn't taking place or they couldn't be diagnosed with hypermobility if a doctor familiar with it thought to check it out. I think it is all intimately tied to Th1 illness (depending on one's pea soup) and we ought to see all of that get better with time. Claire Last edited on Sat Oct 3rd, 2009 20:58 by eClaire |
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Freddie Ash Member
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HI DIANA This is Fred in WV. I have been on NEXIUM for some time now, I was on it before the MP. I have been trying to ween myself off of it, because some time ago I saw a list of meds that the list said doctors would not take and NEXIUM was on the list. I can go 3 to 5 days right now with out having to have one. I was having heart burn when the doctor gave it to me. So I do not recomend any one to start taking unless it is the last resort. Also, to add to my post above, the first doctor to tell me sarc caused mine, he also told me that he had seen patients where the doctors had to surgericaly remove the sarc from the vocal cords. I never had to have that one done, yet. Carricol is most like correct on their view. I too believe it is a TH1 disease caused problem. Remember, I am not a doctor, this is my opinion only on the subject and what I have learned on my own over my life time. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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eClaire Member
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I think doctors (or at least some doctors) would not take Nexium or drugs like it because I remember reading how taking that drug made one less able to handle a deadly stomach bacteria that was going around. (At the time several people had died in Northern VA from the condition.) Apparently stomach acid must be necessary somehow to killing that bacteria. Whether this is an issue on the MP or not I don't know. I just know I decided to avoid that class of drugs as well. Claire |
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marion villa Member
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guys: I used to have gerd long ago, before MP, because in part of the nsaids I tood, well I still take some, but I was over weigh then, i started a low car diet, no milk, no bread,no rice,no pasta, no beans or so... no sugar, little fruit, proteins and green leaf vegetables, olives, tomato or v8 juice,diet jello,little oil for salads, well, then the GERD just vanished as magic....it never came back, I never ate again like a normal person but it was worth it. MP diet is more or less like that, my hoarseness went so bad, even without the GERD, just my vocal cords got very swelled,i couldnt talk, just whisper for 4 months, breath with difficult and to swallow too. I think that bugs in the connective tissue, in cord, or pilorus or cardias or in the urinary meatus make our bodies to leak whatever is inside the other side of the valve. I also used nexium for a while with not much side effects, but I was told to take it with empty stomach and to wait 1 hour before to start eating. I dont take it anymore. |
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Aunt Diana Member
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Thank you all for the good information. This site is better than Wikepedia!! |
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Carricol Member
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Stop and think about it. We have acid in our stomach for only one reason. We need it to properly digest our food. I cannot help but believe that artificial suppression of this natural process with drugs is going to have some negative consequence. |
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laura1814 Member
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I think you all are right! I know my heartburn issues have significantly reduced since being on the MP. Frankly I just assumed that the MP would correct it along with everything else. I will only take Nexxium again if I need it to sing. Until then I am fine without it, though I do occasionally take ranitidine and enzymes if I eat something difficult. But today I had chili and haven't taken either (though I might need something when I lie down). As an aside, Nexxium is much more expensive than my MP antibiotics. |
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laura1814 Member
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I think you are all right! I wrote more but my browser crashed.  Edited to add: will you look at that! Last edited on Mon Oct 5th, 2009 08:08 by laura1814 |
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Chris Moderator 
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Nexxium and Prevacid (and probably others) were first investigated as ulcer remedies. Then, when ulcers were found to be of infectious origin, all of sudden we get lots of advertisements about GERD and Acid Reflux and how Nexxium and Prevacid fix these conditions. Prior to the B. Marshall discovery of the H.Pylori link to ulcers, these were considered pre-ulcerous conditions. It still amazes me that Doctors haven't jumped on the idea that if ulcers were infections, then maybe all the conditions previously considered to be pre-ulcerous conditions might also be infectious in origin. --Chris |
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Freddie Ash Member
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HI CRIS & ALL This is Fred in WV. Cris, I am glad you brought that up about the doctors jumping on the idea of bacteria causing ulcers. I have brought this up to doctors when talking about the MP to them and they look at me like I do not know what I am talking about, that ulcers are caused by bacteria. I am not sure that all doctors are aware of ulcers are caused by bacteria yet. Remember, we are all in this together and I am pulling for us. Your friend in Sarcoidosis Freddie |
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eClaire Member
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Oh Chris, I am so glad that you brought up that issue as you have explained why my stomach hurts if I take ibuprophen, something I had been able to handle pre-MP. You see... I was getting an ulcer about 30 years ago and it abated. Then after I became totally disabled, I was visited by GERD symptoms. Now I realize that my current stomach pain is IP!!! Yeah! Couldn't figure it out because I hadn't had stomach pain in 30 years. Sheesh! That's brain fog for you! Claire |
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Sedona Member 
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Hello all It's been four years and eight months and I know that I am totally better than before. When I first started I thought two years and then back to school to finish my degree and then back to work. But now it is one day at a time. Because of the nature of this illness who can be sure what the future holds. There is no cure there is only relief. That would have depressed me two years ago but now that I know what relief feels like I can't complain. I can't believe that today, I can lay down and get a good nights sleep without waking up gasping for air. That I am not sleeping in the shape of an L with the vertical portion of me on the head board. My entire body is in a horizontal position. Ahhhh so good. There are four things that I have today that I lost to this disease: 1. I can laugh now and not be scared that I will end up in a coughing spasm which would make people nervous. Finally my friends knew not to ask me if I was ok. They got used to the spasms. 2. I can suck in air and not end up choking or having cough spasms because my lungs couldn't handle the immediate thrust of air. 3. I am able to walk to my moms house at an even pace without stopping to catch my breath every step of the way. Same for walking anywhere else - no one has to wait for me to catch up. I wake up with a feeling of having a purpose and no longer linger in bed from being tired and having soar muscles. Yes, sometimes I still wake up to coughing spasms (healing lungs and IP) before starting my day. But they are not as severe or disruptive and don't take nearly as long to reach completion as before. I know that will get better. My acid reflux comes back but that is usually because I ate something completely wrong. I had it recently and it was because I ate wrong and late. I also have to curb the amount of wine I have. I made a Lasagna which I thought gave me permission to has a glass of Pinot Noir . But my stomach said otherwise. I still have a ways to go with the MP. The lasagna was good too. I not only used Italian sausage but I also used ground pork which is what was used when I was a kid at my friends house. The Italians I grew up with ate a lot of pork. It really is a tasty animal but reeks havoc on the intestinal tract. My acid reflux is MP-WIP for sure. Still, most of the time I can eat without worry these days of definite stomach aches and pain.I am truly happy with my current situation. Completely different from Feb-2006 and before. Completely different. Being that sick completely frightened me and I've never been frightened like that before. I'm a bit of a control freak and Sarcoid took the wind out my sails for sure. I am just happy with what I have so far compared to before. Sarcoid taught me that I don't control anything. I like life a lot more now as I am no longer in pain; tired; agitated and burned out from working while sick. I am at peace with lots of things now. The MP has been a gift for me in more ways than one. Today is much more than I could ask for - Far more than I had before. Hi Fred - good to see ya Last edited on Wed Oct 14th, 2009 04:59 by Sedona |
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Juanita Member
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What a lovely thing to read this morning, Sedona! Congratulations on your improvement!! Reading your post made me very, very happy. Thanks! |
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Sedona Member
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Hello Juanita Yes, despite doing stuff to risk an IP response I am doing fantastic compared to when I started. The MP is definitely where it's at babbeee. |
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eClaire Member
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Ditto what Juanita said Sedona. It is always great to hear of someone making such incredible progress. A real inspiration to those of us who feel like we are moving at a snail's pace. Thank you for posting! Claire |
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