The following is an article I wrote as an update to an overview article that I wrote on Lyme and CFS, which you can read at http://members.aol.com/SynergyHN in Issue 8, and you can read other articles there that I refer to in the following article.
Joyce Waterhouse, Ph.D.
(Disclaimer: This material is intended for information only and is not medical advice. Consult your health professional for all medical conditions. CISRA is volunteer-run, and neither CISRA nor the editor receive funding from any doctor, lab or manufacturer of any medication or associated products.) About the Editor: Dr. J. C. Waterhouse graduated from the University of California, Irvine, cum laude and Phi Beta Kappa, with a bachelor's in Biology (much of it pre medical). Dr. Waterhouse received a Ph.D. in Systems Ecology with a minor in Statistics from U.T. Knoxville, did research at Oak Ridge National Laboratory, and published several papers in scientific journals before becoming ill with chronic fatigue and immune dysregulation syndrome (CFIDS or CFS), fibromyalgia and Lyme Disease, and has since spent nearly 20 years studying these and other illnesses (see web site for more details regarding the Editor).
(Author's note: I did not improve significantly after 2 years of the type of approach discussed in the first article at the web site mentioned above, including using tinidazole and high doses of combinations of orals drugs, like Zithromax and minocycline. Therefore, I have written the 2005 update, to discuss what has helped me more recently. Since this article is written in a more colloquial style for the layman, the reader is referred to past articles, available at the above web site, for more detailed, scientific treatments of many of these subjects-- JCW)
Issue 8 2005 Update: Some Promising New Approaches to Lyme Disease and Other Related Chronic Illnesses by J.C. Waterhouse, Ph.D.
The basic information in the previous article is still accurate (``Lyme Disease and its Relation to Chronic Fatigue Syndrome, Fibromyalgia, Psychiatric and Rheumatic Disease,'' Sept. 2002), however, I have learned a number of additional things since I wrote it that may prove useful to others. Although many patients do report improvement with extended use of antibiotics for chronic Lyme Disease, for many, the improvement is inadequate, or relapse occurs, even with long term intravenous antibiotics. In my own case, I used various oral antibiotics in several combinations at high doses for 2 years and did not improve significantly. I also used Mepron for 3 weeks for Babesia and did not improve (in fact, the Mepron had a negative impact, in that I developed a sensitivity to it and it took a very long time to excrete the Mepron after I finished taking it).
However, the good news is that there is a newer treatment approach that is showing great promise in Lyme Disease. I have used this approach, called the Marshall Protocol, for the last 8 months and have been having much greater success than previously. The approach uses a specific type of immune modulation, together with low doses of certain antibiotics, to more effectively kill the cyst forms of bacteria hiding inside cells. Some believe the cyst or cell wall deficient (CWD) forms of the bacteria are the true source of the chronic symptoms of Lyme Disease, as well as a variety of autoimmune and other unexplained inflammatory syndromes. The Marshall Protocol (MP) was developed by Trevor Marshall, Ph.D., for sarcoidosis, but has recently been showing promise in other diseases thought to be caused by these CWD forms of bacteria (for more details and references on this approach, see Issue 7 on web site).
In this update, I also want to provide my current perspective on some other topics mentioned in the 2002 article. With regard to testing methods, although Igenex Laboratory probably still provides the most sensitive tests for Lyme Disease likely to be covered by insurance, I think the Bowen test is probably actually more sensitive in detecting Borrelia infection (www.bowen.org). It may be true that some people who consider themselves fairly healthy may still test positive on the Bowen test, however they will typically have low titers (and it is possible they may have some mild symptoms, or develop symptoms later). It appears that you can use the titers (or concentrations of bacteria) found with the Bowen test to monitor the level of bacteria in your body.
However, if you want to use your financial resources most efficiently, another strategy might be to skip individual tests for bacteria and instead test for vitamin D metabolites. The two vitamin D metabolites that need to be measured are 1,25D and 25D, and for the most accurate results for 1,25D, you must use a lab that freezes the samples for transport (for more information, see Issue 7 or www.marshallprotocol.com). The ratio of 1,25D to 25D are used in the Marshall Protocol (MP) to indicate the level of inflammation occurring due to infection by CWD bacteria, which include Borrelia burgdorferi, as well as many other species of bacteria.
Unfortunately, many studies are reporting low vitamin D levels and recommending vitamin D supplements, as a result of measuring only the inactive precursor form of vitamin D (25D). As occurred in my own case, this practice of measuring the wrong type of vitamin D can lead to problems in people with certain inflammatory conditions. My level of inactive precursor 25D was low, while my active, 1,25 vitamin D hormone was elevated, and contributing to my symptoms. The 1,25 vitamin D hormone may be elevated in patients with low 25D because infected macrophages are causing an excessive, unregulated conversion of 25D to 1,25D. The high 1,25D can directly cause many symptoms, as well as help the bacteria to increase and can actually lead to bone loss.
As for testing for other coinfections, Dr. Marshall believes that early evidence suggests that various coinfections will be eliminated by the immune system as you recover using the MP. Thus, if you do the MP, you may also choose to forego individual tests and treatments for tick-borne coinfections.
As for guaifenesin, which I mentioned helped my fibromyalgia in the past (for details on the protocol, see Issues 1, 2 and 4, see web site), I still think it can be helpful for people, but it should not be used when on the Marshall Protocol. In fact, my experience indicates that the lowering of excessive levels of 1,25 vitamin D when on the MP, makes the guaifenesin unnecessary.
With regard to reducing food allergies/sensitivities, I still think this can be very helpful to many people. I find that those with chronic illnesses usually need to do more than just one or two blood tests to discover all their food sensitivities. This is true for a number of reasons, including the fact that the level of reaction usually varies depending on the amount of exposure to the food, supplement or chemical. I find that the most useful and cost effective method of detecting reactive items is the pulse test, which you can read about in Issue 5 and the Issue 8 articles. Since writing the article for Issue 5, I have found that I can successfully use the pulse test for delayed food sensitivities, but will often tend to detect a pulse reaction more easily during the withdrawal reaction phase, 12 to 48 hours after I stop eating the food, as described in Issue 8.
For those who lament having to alter their diet, it is quite encouraging that many people on the MP find that when they treat the infection, their food and chemical sensitivities evenually disappear. Apparently, for these people, the overreactions to foods and chemicals are a result of the immune imbalance due to infection.
Something else I now think may play a role in chronic fatigue syndrome (CFS) patients is infection with a new species of roundworm. I think it may turn out that more than half of CFS or CFS/Lyme patients may benefit from anti-roundworm treatment, which I also discuss in an article in Issue 7. One of the next topics I will be writing about is an over-the-counter drug that may be even more effective than the prescription anti-roundworm drugs. People with more apparent food sensitivities or gastrointestinal symptoms, like myself, may be more likely to have the roundworm infection, in addition to the CWD bacteria. Reducing or eliminating the roundworm may also reduce food sensitivities.
For those who suffer from frequent colds or stomach or respiratory flus, I also want to point out that I have found two preventive measures that have completely halted my previously very frequent infections (see Issue 7)
Editor's Note: I have recently become affiliated with the Autoimmunity Research Foundation (ARF). I am doing some reviewing of the literature and writing on subjects related to the role of cell wall deficient bacterial forms, vitamin D dysregulation and the antibiotic approach being used to treat a variety of autoimmune and inflammatory diseases (aka the Marshall Protocol). I am doing this on a voluntary basis because of the benefit I have received from being on the Marshall Protocol and there is no financial connection involved. Opinions I express in CISRA's Synergy Health Newsletter are still my own, and not that of the ARF or Dr. Marshall, unless indicated otherwise. I will also continue my independent inquiries, research and writing for CISRA on a variety of topics that I believe may benefit patients with chronic disease. For issues of previous newsletters mentioned in the text, see www.members.aol.com/SynergyHN Posted by docjen (Member # 7510) on :
Thanks, Joyce! This is a really concise summary. It's great to hear of progress from another MPer. Good luck!
Posted by joycejcwat101 (Member # 6848) on :
For those interested, the Chicago conference DVDs are also available from the first web site and include a great talk by Dr. Lida Mattman, the author of a great book on Stealth Pathogens: Cell Wall Deficient Forms. She and others have done decades of research on the intracellular cyst forms of a wide variety of bacteria, including Borrelia burgdorferi.
Joyce Waterhouse, Ph.D.
Posted by bpeck (Member # 3235) on :
I'd be interested to hear why you decided to become a patient spokesperson/advocate for this particular alt. therapy.
If you were a non-responder to long term Lyme therapy, and had chronic (or latent) Lyme for over 10 years, then I'm assuming that you realize that the disease can remit under certain therapies (alternative, conventional or LLMD directed.)
Please don't take offense, as there is no offense intended.. But I was a very positive responder to the tetracycline family of drugs (along with HCQ) but I wasn't moved to become a spokesperson for the drug companies that make them..
I would like to understand your motivation.
Barb
Posted by riversinger (Member # 4851) on :
As far as recommending D testing instead of western Blots, you are very innaccurate, as many with Lyme found.
I had clearly positive CDC western blots. When I had the D tests done in the first rush of interest in the MP, I had very clear inflammation, enough that it could be palpated, with swelling and heat.
In spite of this, my D results did not come back in the ratio that Marshall predicts in CWD illness. My 25 D was not low, and my 1,25 D was not very elevated. Marshall tried to convince me of all kinds of reasons why this might be so, and the protocol might still work, including that the antibiotics I had already taken had lowered the 1,25 D.
For me, if I skipped the western blot and went by the D tests, I would have been missed. From what I understand, quite a few Lyme patients do not fit the profile.
I figured if what I was doing was working, why switch? So I have been watching, but so far there seems to be a pretty high drop out rate in the protocol. I hope that they are able to figure out better who is a likely candidate, as it does seem some respond, but I don't think this protocol deserves a blanket endorsement.
[ 03. October 2005, 12:21 PM: Message edited by: riversinger ]
Posted by joycejcwat101 (Member # 6848) on :
My motivation is to let people know about an option that might help them--I certainly have no financial motives, if that is what is implied. As one can see from my other articles at http://members.aol.com/SynergyHN , that is what I have tried to do over the years on a number of different new treatments-- provide information, especially on things that have helped me.
One can read Issue 2 and see how bad I was at one point-- that sort of experience has made me into the sort of person that wants to help others avoid the extreme suffering I went through. I'm also motivated by the preliminary evidence of response to the MP in a number of other autoimmune illnesses, and other chronic inflammatory conditions and in sarcoidosis (in which some studies find a high prevalence of Borrelia infection). That is one reason I am particularly excited about what I have been learning over this last 14 months since I have been studying the Marshall Protocol.
I don't think the pattern of my response of strong Herxes on the MP followed by improvement fits with the idea of sponataneous remission, especially considering my very longstanding severe illness.
As for the D tests, I just mention it as an option, not the only one. It might turn out that a person has an infection with an organism that they have not been tested for (and there are so many possibilities), and the cost could get quite large, if one must include Chlamydia, Borrelia, the various Mycoplasmas, Brucella, Baronella, Mycobacteria ....
Actually, I plan to write more in future about how there are people with seemingly normal D values, which show a response to a therapeutic trial of the MP--this is something we are only recently learning about. One doctor has even been reporting low D levels that increased with antibiotic treatment prior to the MP. So, unfortunately, it is not always very clear cut even with the D tests. The therapeutic probe seems to be the bottom line for knowing if it is likely to work. But usually the D tests are quite helpful.
The response to the MP is far beyond what I experienced with minocycline, or even mino and Zithro. at large doses. There just seems to be no other explanation to me than that it works.
And if anyone is happy with their current treatment, that's great. But I want to let people know about an option that is available if they are not happy with the other options.
Joyce Waterhouse, Ph.D. P.S. I don't know what the drop out rate is, but I think people drop out generally because the Herxheimer reactions are stronger due to the more powerful ability of the MP to kill the intracellular cyst forms of the bacteria and the MP must be very carefully paced through cautious dosing levels and other methods. I list a number of the reasons I think some people have difficulty with the MP at http://members.aol.com/SynergyHN/MPall .
Posted by bpeck (Member # 3235) on :
Thanks for the explanation - I have a few questions.
1) Are you in Phase 3? 2) Do you know the drugs and dosages for Phase 3? 3) Have you signed a confidentiality agreement ?
If the answer to 2 and 3 are yes and no- then you may be willing to talk about your therapy specifically.
What are the drugs used in Phase 3 and how do you think they helped you (i.e. what symptoms were alleviated?)
Thanks, Barb
Posted by docjen (Member # 7510) on :
I want to weigh in again and thank you, Joyce, for your work. It will be interesting to read about the research as it unfolds and hopefully makes it into print in some journals. There is a lot that we don't know about the synergy between borrellia infection and intricate chemical balances in the body.
I also want to comment that I am baffled by the emotion that Marshall Protocol seems to elicit from some, both inside and outside the lyme community. I continue to be alarmed by the dogma lined up against anything atypical, particularly from those who have experienced lyme and the difficulty getting good care and treatment. Let us not forget that conventional treatment is not well proven in peer-reviewed literature, and chronic borelliosis is recognized by scant few. It was not that long ago that diseases such as MS, lupus, rheumatoid arthritis, and endometriosis were also considered "fringe" diseases, especially for women. I am thankful for the pioneer researchers of the 1960s and 1970s that did work to find biomarkers and treatments for these diseases, and am confident that similar advances will be made for borreliosis.
Thanks again Joyce, and continued luck with your treatment.
Posted by bpeck (Member # 3235) on :
DocJen:
You wouldn't be baffled if you knew the history and evolution of this group. I supplied some of the early research papers to this group before there was a protocol NAME even attached attached to the group.. I broke with them when IMO they were starting to fit the criteria of a cult.... and they were writing group blessed formal replies to some people - using words like you're using in your post to me.
So, in my case - it certainly isn't emotion that drives my question(s).
IN ANY CASE- I asked Joyce a question... but I would pose the same questions to you if you were/are a user of this protocol...
So......... either of you going to engage here - or not?
Barb
Posted by riversinger (Member # 4851) on :
docjen, I don't think you are running into a dogma against alternatives. certainly not from me, and I can't believe it of Bpeck.
I was extremely interested in the MP, and studied it very thoroughly, including direct mail with Marshall. I discussed it in great depth with both of my treating doctors, and went through the testing. What I was put off by was the unwillingness to look at and address anything that didn't fit Marshall's theory.
I am currently on a doctor's list which Marshall posts on, and he continues in the same vein there. I feel this is dangerous to patients. Not all of the people who had to stop the protocol were experiencing herxheimer reactions. Some were just plain old negative responses to the protocol.
If Marshall were more willing to acknowledge that, he could use the information to evaluate when, and why, his protocol works, and when it doesn't. He might find ways to help those who can't do the straight protocol. And yes, I know it has been tweaked. But I also know, personally, people who had very serious problems while on the protocol.
I think the MP has some interesting ideas, and it is obviously working for some. What I object to is the dismissive attitude Marshall himself displays towards any questioning of the protocol, or his study, or his theories, no matter who is doing the questioning, or how valid the basis.
The MP is one option out there, but it is far from the ultimate answer at this point.
Posted by bpeck (Member # 3235) on :
SkyK: You are miss reading me, and missing my point.
I certainly am not against alternative therapies having tried many myself over the years(and various supplements, herbs and homeopathy treatments)- and many *did* improve my condition.
And I am certainly not against using an ARB as an anti-inflammatory, as I know some people who are using them with good results. ARBs are immunomodulatory, and they are being researched heavily as we speak. As River points out, this protocol is just one therapy among many.
If Spokespersons for any particular therapy pop up on LymeNet there are probably going to be questions about it. And I'm asking a few questions.
And as of yet I see that my questions remain unanswered.
Barb
PS.. if this thread continues to be JUST a disccusion on why questions AREN'T being answered, then DURA's right- the whole topic should just be moved to GENERAL.
Posted by docjen (Member # 7510) on :
Thanks SkyKing. I have an idea of what you are saying.
I am not a spokesperson for any treatment. I am simply a patient as well as a health professional who has done some research and have found an intriguing alternative to the treatment I was receiving, which seems to have scientific merit. I actually, in point of fact, am not following the Marshall Protocol to form, and am working with my doc (who is fabulous) to tailor care that addresses my needs. If you have ever met a bench scientist who is passionate about what they study, you will find that Dr. Marshall is quite true to form. Though I don't know him, my opinion is that he is not a cult figure, but a researcher who believes in what he is doing.
No Q's and A's, just a hope that we each find a treatment that suits each of our needs.
Thanks again, Joyce, for the research update.
Posted by joycejcwat101 (Member # 6848) on :
I appreciate the comments of everyone and I personally prefer to assume that most people are just doing their best to deal with very complex issues (and I think that is usually the case). I think human limitations and the complexity of the science can explain most disagreements.
In all cases, I do my best to study the scientific background and try to rely on that as much as possible. Though, of course, I am strongly affected by my own experiences, as everyone is.
Needless to say, if I felt there was any resemblance between the Marshall Protocol and a cult, I would not be involved.
I think part of the problems people may have with Dr. Trevor Marshall at times, may perhaps come from the evolution of the Marshall Protocol web site from a discussion group that was more free wheeling and in which Trevor Marshall had more time to answer questions, to a group that is more targeted toward helping people use the protocol.
This has led to a limitation (which some call censorship) to posts that the staff thinks will be helpful and accurate for people trying to use the protocol and that will avoid confusing them, especially to the point that it might lead them to not do the protocol correctly. Also, Dr. Marshall has continually become more busy with attending conferences, going to Washington D.C. to meet with FDA and NIH officials, writing articles and grant proposals, answering phone calls from physicians applying the protocol etc...
I could wish sometimes, as others do, that Dr. Marshall had more time to answer questions and address issues that I am particularly concerned with. I also wish that the science was more definite on some issues. But no one can help the fact that human biomedical science is extremely complex and there is so much yet to be done in researching so many questions relating to the illness and treatment, including some points relating to the protocol.
But, actually, I think Dr. Marshall is more forthcoming than most doctors (within the limits of his time and knowledge) that I have dealt with as a patient or who have theories and protocols I have been interested it. With most of them, patients would have much less access and one doesn't find many who provide information and even direct answers to questions for free, since he does not charge anyone for help. For most doctors, unless you are a researcher or doctor yourself, you are unlikely to get a response. Of course, as time goes on, he has had to limit the degree to which he can answer all sorts of questions and so he has to be selective in what he spends time on.
I believe I have come to know him to some extent and that he is extremely passionate about what he is doing and that this is quite understandable considering his background. He was diagnosed with a serious lung disease (which later he found out was sarcoidosis) as a young man and told he probably would not live long. He has struggled on, studying the illness for many years. He has gotten well and watched good friends get well using the protocol he developed, following it in a precise way (documented in several scientific articles). He has watched other good friends die because, he firmly believes, they were unable to follow the protocol exactly.
I think that sort of experience would make most people pretty passionate about the need to correctly apply a treatment approach (as past experience showed it worked when done in a particular way). Now he is particularly focused on getting NIH support and recognition and overcoming entrenched views to try to save more lives as soon as possible.
No one is perfect, and he may lose his temper sometimes and become impatient with people and I am sure this has contributed to some people having a negative view of him. And he probably has other faults as well, as we all do. But I have studied the science intensively for quite some time, and I think that although there are some areas that are still uncertain to some degree, most of the time, he appears to me to be correct in his judgements, as far as that can be determined so far. But I still am always questioning and trying to learn more.
And now for a little more of the science. I think one of the really key papers to understand is one by Mawer et al as well as a couple associated papers. Most of us Lyme patients recognize that rheumatoid arthritis is probably usually caused by Mycoplasma or Lyme or similar bacteria, thus the study by Mawer, below, might be seen as also applying to Lyme. It illustrates why, although the D tests are helpful, they are not always going to show elevated 1,25D in the serum. Instead the 1,25D may be locally elevated, like in the joint.
Here is part of a letter I wrote to a doctor I know: I have enclosed one paper by Mawer, which is perhaps one of the most enlightening, of the many I have read in researching this subject. It shows how there is extrarenal synthesis of 1,25D in the joints of RA patients compared to controls, and it may not show up in elevated serum levels, but may still do harm, as the abstract below shows (Inaba et al shows that disease-associated inflammatory cytokines in synovium are correlated with 1,25D levels). Also, the paper by Sambrook, that Mawer cites, shows that the 3 patients with the lowest 1,25D levels had the lowest amount of periarticular bone loss (and the levels of 1,25D were below 20 pg/ml). One patient on hydroxychloroquine, which blocks the conversion of 25D to 1,25D was the only patient to actually show a slight gain in periarticular bone.
I think the mistake that the researchers make in recommending vitamin D for those with autoimmune (AI) disease is that they base it on animal studies showing that high levels of D reduce symptoms through suppressing the immune response. But they don't take into account that there is an infectious cause, and the higher D may be harming the ability of the immune system to fight the bacteria. Some short term human studies may show benefit of vitamin D in AI disease, but experience with patients that post on the marshallprotocol.com site is that the people who have taken a lot of D take longer to respond, because it takes longer to bring their D levels down. The short term benefit may be similar to the effect of giving a steroid. >>
J Bone Miner Res. 1991 Jul;6(7):733-9. Related Articles,Links Evidence for nonrenal synthesis of 1,25-dihydroxyvitamin D in patients with inflammatory arthritis. Mawer EB, Hayes ME, Still PE, Davies M, Lumb GA, Palit J, Holt PJ. Department of Medicine, University of Manchester, Manchester Royal Infirmary, UK.
The extrarenal synthesis of 1,25-dihydroxyvitamin D [1,25-(OH)2D] is a characteristic of activated macrophages and has been demonstrated to occur in vitro in synovial fluid macrophages from patients with inflammatory arthritis. To examine whether such synthesis occurs in vivo, 19 patients with rheumatoid arthritis, 5 patient controls, and 5 healthy controls received a challenge oral dose of 250 micrograms 25-hydroxyvitamin D3 (25-OHD3) and the serum 1,25-(OH)2D3 response was measured. The median rise in serum 1,25-(OH)2D3 was significantly greater (22 pg/ml) in the rheumatoid patients compared to either of the control groups (8 pg/ml), although the increase in precursor 25-OHD3 was similar in all groups. The serum 1,25-(OH)2D concentration did not rise above the normal upper limit in any of the control subjects but exceeded the normal range in 8 of the rheumatoid patients.
Extrarenal 1,25-(OH)2D synthesis is substrate dependent, unlike renal 1 alpha-hydroxylation, which is homeostatically controlled. Excessive 1,25-(OH)2D3 synthesis in the rheumatoid group on raising the 25-OHD3 concentration is indicative of nonrenal production of the hormonal metabolite. Further evidence for substrate-dependent extrarenal synthesis came from measurements of 25-OHD and 1,25-(OH)2D in paired serum and synovial fluid samples from 19 patients with inflammatory arthritis, including 15 with rheumatoid arthritis. Synovial fluid 1,25-(OH)2D was usually present at a lower concentration than serum 1,25(OH)2D, with which it was strongly correlated (Kendall's R = 0.46, P less than 0.001).(ABSTRACT TRUNCATED AT 250 WORDS) PMID: 1950677 [PubMed - indexed for MEDLINE]
Rapid periarticular bone loss in rheumatoid arthritis. Possible promotion by normal circulating concentrations of parathyroid hormone or calcitriol (1,25-dihydroxyvitamin D3). Sambrook PN, Shawe D, Hesp R, Zanelli JM, Mitchell R, Katz D, Gumpel JM, Ansell BM, Reeve J.
Inaba M, Yukioka K, Furumitsu Y, Murano M, Goto H, Nishizawa Y, Morii H: Positive correlation between levels of IL-1 or IL-2 and 1,25(OH)2D/25-OH-D ratio in synovial fluid of patients with rheumatoid arthritis. Life Sci 1997;61(10):977-85.
Someone has mentioned that some are dissatisfied that Trevor Marshall does not always answer questions or seems too firmly convinced of his own views being correct (not an uncommon trait in someone who has seen many successes with a protocol). I am willing to do my best to answer any questions I might know the answer to, or give you my best understanding on the subject, if anyone wants to ask here.
Barb, if I have not answered a question you have asked, perhaps you could repeat it. It seems sometimes there are multiple questions and issues interspersed in these posts and I may have missed one or more.
I am in Phase II of the protocol. To protect patient safety due to the stronger Herxes that can occur in, the Phase II and III antibiotics are not listed for the public, but doctors can obtain the information, as well as patients who have gotten through Phase I and who have shown, through a questionnaire, that they understand the protocol.
I have not signed a confidentiality agreement, but will not reveal the drugs--I guess you could say we are on the honor system. I know the Phase III antibiotics, but won't share the information , in order to protect patient safety, as has been requested.
I have my progress reports posted and anyone is free to look at them at: http://marshallprotocol.com/forum20/1550.html You can read about Success Stories of people at various phases on the protocol at: http://marshallprotocol.com/forum2/1593.html . And of course, you can read plenty of other posts about people having difficulties with Herxes by looking at other progress reports and you will usually see quite a number of posts in which staff and others try to help them.
I am particularly interested in improving the protocol and if anyone is having trouble with it and quit the MP or is currently having trouble with it and wants suggestions outside the http://www.marshallprotocol.com web site, you can contact me and I will see if I can help out.
I personally feel I have benefited a lot from my food sensitivity reduction and some other things I mention in my progress reports (also see web site) and and through taking the MP quite slowly to avoid Herxes that are too strong. The gains in health from food sensitivity reduction (see Issue 5 & 8, website below) occurred prior to the MP, but I find it very helpful in my case to keep them at a minimum during the MP. Otherwise,I might have to deal with a Herx and a bad food reaction at the same time.
[ 04. October 2005, 07:34 PM: Message edited by: joycejcwat101 ]
Posted by bpeck (Member # 3235) on :
JOYCE WROTE I have not signed a confidentiality agreement, but will not reveal the drugs--I guess you could say we are on the honor system. I know the Phase III antibiotics, but won't share the information , in order to protect patient safety, as has been requested.
BARB REPLIES: Thankyou for answering the question about the confidentiality agreement question. But if you are on the honor system, and have been requested not to reveal the antibiotics used or their dosages- then without knowing the chemical classes it's pretty hard to discuss whether one is indeed having a herx- or a drug side effect - or something else entirely.
Posted by joycejcwat101 (Member # 6848) on :
Barb, You have a good point with regard to the Phase II and III antibiotics in terms of discussion in this forum--we can't discuss the details here.
However, I can tell you they are standard sorts of antibiotics that have been widely used for years. They are considered generally safe, especially so at the very low doses used (alternate day or less frequent, and starting with 1/4 or less of the usual dose).
Also, the way I know it is a Herx is that the reactions get less over time, and one typically feels better over time, especially between doses or when taking an antibiotic holiday. Also, one has a Herx when on Benicar at a particular dose, but not with the same dose when off Benicar-- I have verified this a couple times in my own case. To me, this is strong evidence in favor of Dr. Marshall's explanation.
Joyce P.S. One should not just add Benicar without studying the MP, at least read my article ( http://members.aol.com/SynergyHN/MPall ), because if not done properly, one can make things worse and experience a severe Herx or have other symptoms.
Posted by joycejcwat101 (Member # 6848) on :
If anyone wants to get occasional free updates/newsletters with articles that I write on chronic illness and Lyme, you can go to http://members.aol.com/SynergyHN and find out how to get on the list.
Joyce Waterhouse, Ph.D.
Posted by dsiebenh (Member # 5353) on :
I'm on Phase 3 of MP. I'm not going to publicly list the exact drugs and dosages out of respect for Dr. Marshall's wishes. (He is concerned about people having adverse reactions from experimenting with untested abx and dosages.) But I will tell you that Phase 3 is just like phases 1 and 2 in that you are combining low doses of the abx with continued Benicar and Vitamin D avoidance.
After 10 months, I'm still herxing vigorously. Vigorously enough that this month I am taking a break for the first time. The last 10 months have been very trying at times but I have no doubt I'm heading in the right direction. I hope to post some details of my progress after a few more months of herxing.
Posted by Jewlbug (Member # 4554) on :
In response to the ABX used in the Marshall Protocol, I have some documentation that states that Zithromax is used in Phase 2 and Bactrim DS is used in Phase 3.
I am not on the Marshall Protocol, nor a member of the site, but my LLMD does use a variation.
Jewl
Posted by joycejcwat101 (Member # 6848) on :
As I have said, for patient safety, we agree not to reveal the antibiotics used in Phase II and III of the Marshall Protocol, so I won't confirm or deny the use of those antibiotics just mentioned. I will say, though, that Zithromax stays a long time in the body (like up to 3 weeks)and so it should be used with special care.
I would also repeat that any antibiotics or combinations of antibiotics that you use under normal circumstances have greatly enhanced effects in association with the immune modulation used in the MP.
That is why one uses great caution and starts at very low doses and increases them only very slowly to avoid excessive exacerbations due to Herxes. For instance, people who did not even know they had heart involvement have had rather scary heart episodes if they did not do things carefully (either a slow heart rate or a fast heart rate may occur). So, all I can do is urge people to please be careful and really learn about the MP before trying to apply it.
And if anyone is considering using a variation of the MP, IMO it is rather unpredictable what might happen, so I again urge great caution. I personally don't think it wise to use just part of the MP or a variation of it. It may work out, but it seems to me that much less is known about using variations of it, and thus there is probably more risk involved.
Joyce Waterhouse, Ph.D.
Posted by joycejcwat101 (Member # 6848) on :
I hope I don't sound like I'm being repetitious, but I thought perhaps I should clarify that the heart symptoms I mention just above, occur because the bacteria have infected the heart, sometimes at a level where the patient has not yet had any symptoms. When one has a very strong, effective Herx, especially in Phase II of the Marshall Protocol, there may be a temporary flare in inflammation in the heart due to bacterial die off which may affect its functioning.
This has typically been controlled by keeping doses of antibiotics low and only increasing them very cautiously. And then if one does have a cardiac Herx, one increases the frequency of dosing of Benicar often to 40 mg every 4 hours. No one has died from it, but there have been a few that had a scary episode and may even have gone to the ER on account of a cardiac herx. But the good side of this, IMO, is that you are getting rid of the bacteria that were slowly damaging your heart and would eventually have probably led to various heart conditions, like arrhythmias, cardiomyopathy, ischemic heart disease etc...
One of the Phase II antibiotics is more likely to produce these cardiac herxes and one is only given one dose (1/8 or less of the usual dose initially) every 10 days (and probably beginning with a lower dose of minocycline with it-- like 25 or 50 mg).
But once again, I urge everyone, especially those with any sign of heart problems (or even if you are just over 40 or had Lyme for a number of years) to not do the MP without following the protocol as described at the site at http://www.marshallprotocol.com and under the supervision of your own doctor.
I really am only saying this for your safety. The information and assistance is free. Joyce Waterhouse, Ph.D. for my article on the MP, see http://members.aol.com/SynergyHN/MPall
[ 07. October 2005, 02:30 PM: Message edited by: joycejcwat101 ]
Posted by SForsgren (Member # 7686) on :
Joyce, To what extent do you follow the "avoidance of sunlight" requirements?
Posted by joycejcwat101 (Member # 6848) on :
Scott asked to what extent I follow the light restrictions for the Marshall Protocol.
The answer is that I do follow them pretty strictly. As time passes, one can ease up some and it differs some from case to case how strict one really needs to be for how long. Now, there is Ketonconazole cream, which is helpful in blocking conversion of vitamin D to the active form in the skin and that makes it easier. I believe that with a few precautions, all but the very ill can usually lead a fairly normal life on the MP as far as going outside and all, although I wouldn't advise any beach vacations or the like for a while, if you go on it.
in one of the sites dealing with sarcoidosis, and/or sites devoted to teh use of benicar and abx,etc. or a paper just on vitamin D, there is a paper that implicitly suggests that one or more forms of vitamin A, and/or its receptor(s) are involved in at least one pathway that one or more forms of vitamin D is involved with.
at the moment,i vaguely recall one paper suggesting that one or more forms of vit.A had some influence, direct, or indirect, on one or more receptors for one or more forms of vit. D.
have you read anything on role of vitamin A in any of the pathways, and/or receptors that seem to involve both vitamin A and D?
thanks
pq
Posted by joycejcwat101 (Member # 6848) on :
pq,
I have seen vitamin A mentioned in the sort of context you bring up. But I don't remember the details. At the moment, all I recall is that it did not appear to me be of much importance for the core issues of getting well, so I didn't spend more time on it. If I come across more on it and it seems to me to be significant, I will add more later.
I think it is like most nutrients with regard to the MP, the goal is to get near the RDA levels(except for vitamin D), preferably from food, but if can't get if from foods, then from cautious use of supplements.
Joyce
Posted by joycejcwat101 (Member # 6848) on :
I mentioned I am on Phase II of the MP, but I should have clarified that I am actually on a modified Phase II, using an alternate antibiotic that is less likely to cause a cardiac herx, but tends to get rid of cognitive and fatigue symptoms more quickly.
I realized that I had made an error in my previous post on the Phase II antibiotic that particularly provokes cardiac Herxes. I went back and changed it to clarify (one starts at 1/8 or less of the usual dose).
So, here is what I should have said:
"One of the Phase II antibiotics is more likely to produce these cardiac herxes and you only take one dose (1/8 or less of the usual dose initially) every 10 days (and probably beginning with a lower dose of minocycline with it-- like 25 or 50 mg)."
Anyway, I hope everyone who tries the MP, goes the full route and thus learns all the details from the web site, and certainly doesn't try to just rely on what I am saying here. I just wanted to make this clarification to emphasize how much the effectiveness of the antibiotics is increased on the MP, and how big the Herxes can be.
Sorry for the error.
Joyce
Posted by winsomme (Member # 5623) on :
joyce
how can i find out about this "over-the-counter" roundworm treatment?
thanks bill
Posted by joycejcwat101 (Member # 6848) on :
Bill,
I don't have the information and research on it to a point that I want to make it public on the web yet. I'm not sure exactly when it will be ready. But if you want to email me through the web site, I will put you on the list for future newsletters and updates ( http://members.aol.com/SynergyHN ). If you are very eager, I might even send you the information a little early, before it is on the web site or sent out more widely.
I will also post on Lymenet, when I have the article on it complete.
Joyce Waterhouse, Ph.D.
Posted by joycejcwat101 (Member # 6848) on :
P.S. I guess I should add regarding the parasitic roundworm (that Bill asked about), that you can read about it at: http://members.aol.com/SynergyHN/roundworm )
Posted by Semper Fi (Member # 3051) on :
Good writeup. I'm interested in the round worm information. I have been on the Mp for 15 months, or so Off for 6 weeks, or so. Got a few symptoms back, like thumb and foot pain. Back on for 4 months, mostly all gone. Symptoms 95-98% better, depends how much I have to drink [ alcohol] and how hard I play Handball.I'm on phase III, my wife is just starting phase III and I have 5 friends on the MP, all doing better, some very well. It takes time, not an instant cure, but for me is the best treatment I know of. There is always a wrinkle here and there for some people. Why some struggle harder than others, not sure. Probably how close theyfollow the protocol [ sun and all] ,how sick they are, co-infections, immune system response, metals, and many other problems. I help to pay for my friends treatments, because I beleive the MP is the best, and most safe treatment available. I'm always looking to find new and improved treatments . Adding quercin, magnesium helps some but does nothing for others. I did gain 8-10 pounds while on the MP, but could be I'm getting older, eating like a PIG and Drinking beer again, but still I blame it on the MP. It is nice to blame someone, other than myself........If I lose a handball game, I always blame the Lyme......My wife is getting tired of the protocol, but she is doing well and I won't let her quit. She herxs every 6-7 days, for a day or two. Seems to corespond to the Z. I donot herx much at all, only when I drink to much.......must be the lyme....
Posted by joycejcwat101 (Member # 6848) on :
accidentally repeated post
Posted by joycejcwat101 (Member # 6848) on :
Semper fi:
Glad to hear of your report on the MP.
For you and others who may be interested. Hidden food allergies/sensitivities can cause lots of problems and contribute to weight gain (or loss).
Many have tried various approaches, but I have found none of the usual ones worked adequately for me, since the reaction levels change depending on how much you have been eating the food. It took the at home pulse test to really help me arrive at the optimal diet: You can see articles in Issue 5 and 8 at http://members.aol.com/SynergyHN on this subject.
Joyce Waterhouse, Ph.D.
Posted by joycejcwat101 (Member # 6848) on :
I just want to add what I think may be the relationship between the food reactions, Lyme, the MP and other infections.
I think the immune dysregulation caused by various infections cause a person to be hypersensitive or at least worsen any tendency to hypersensitivity.
In addition, the roundworm is thought to burrow through the intestinal wall, thus increasing a leaky gut and food reactions through this and other immune and neurological effects.
People over time on the MP often say their food and chemical reactions lessen or disappear. However, in my case (at 10 months)this hasn't happened yet.
Joyce Waterhouse, Ph.D.
Posted by joycejcwat101 (Member # 6848) on :
Announcement: Saturday, Nov. 12 Presentation, 1-3 p.m., Whittier, California
Guest Speaker. J.C. Waterhouse, Ph.D., will discuss The Marshall Protocol, an innovative treatment developed for immune system dysfunction in illnesses such as Chronic Fatigue Syndrome, Fibromyalgia, Lyme disease, Rheumatoid Arthritis, Sarcoidosis, Lupus and a variety of other illnesses involving chronic inflammation. The Director of the Chronic Illness Support and Research Association (CISRA) and the Editor of CISRA's online Synergy Health Newsletter ( www.members.aol.com/SynergyHN ), Dr. Waterhouse is using The Marshall Protocol to recover from Lyme Disease. The presentation will be in laymen's terms and allow for audience questions. Ancillary treatments used in Dr. Waterhouse's ongoing recovery will be briefly addressed. (Lyme Meeting, organized by Earis Cormann: November 12, 1-3 pm Presbyterian Intercommunity Hospital, Room "F" (lower level) 12401 Washington Blvd. Whittier, CA 90602 --hospital is located off 605 fwy at Slauson Exit -- for directions phone (562) 698-0811)
You are welcome to forward this announcement to others you think may be interested.
Overview of two Issue 7 Articles from CISRA's online Synergy Health Newsletter:
1. New Evidence of Excessive Levels of the Active Form of Vitamin D (1,25 D) and it's Role in Autoimmune Illnesses, Chronic Fatigue Syndrome, Fibromyalgia and Lyme Disease. Despite some studies that suggest that vitamin D supplementation is beneficial in a variety of chronic illnesses, measurement of the active hormonal form of vitamin D (1,25D), shows that many patients actually have excessive vitamin D production due to immune activation. Part of the misunderstanding regarding supplementation arises from the fact that most studies usually measure the inactive precursor form of vitamin D and are unaware of the role of intracellular bacteria in producing vitamin D dysregulation. Some people may even think they feel better taking vitamin D, but new evidence suggests that this is due to its role in suppression of the immune system's killing of bacteria, that sometimes leads to symptom relief, but may lead to longer term harm. This article discusses the research on this and how it relates to the Marshall Protocol.
2. A New Protocol for Many Unexplained Inflammatory Illnesses: Bacteria and an Excessive Inflammatory Response (Marshall Protocol). A number of patients with illnesses like rheumatoid arthritis, chronic Lyme disease, fibromyalgia and chronic fatigue syndrome, are having promising results using a protocol developed for the autoimmune disease, sarcoidosis. The protocol, developed by Trevor Marshall, Ph.D. (Marshall Protocol), involves immune system modulation and low doses of particular antibiotics to combat cell wall deficient forms of bacteria (CWD). Accurate and up to date information on the protocol can be obtained free of charge from two web sites (www.marshallprotocol.com and www.sarcinfo.com). There is a forum for doctors and one for patients at www.marshallprotocol.com. Experience has shown that the protocol must be studied thoroughly and followed carefully in order to be effective and avoid possibly serious consequences related to possible excessive Herxheimer reactions (due to bacterial die-off)that may occur if the antibiotics are not used in the manner and at the doses described in the protocol. Also, patients on the protocol must minimize exposure to sun, bright light and dietary vitamin D, since for most patients, not doing so can cause significantly worsened symptoms and reduced effectiveness of the protocol.
Posted by joycejcwat101 (Member # 6848) on :
I just wanted to let you all know that an approximate transcript from the presentation announced above is now online at http://members.aol.com/SynergyHN/transcript . It is a discussion of the Marshall Protocol in Laymen's terms including over 20 questions and answers regarding the Marshall Protocol and related topics. I also discuss some of the things that helped me before the Marshall Protocol.
Also, you can read about my own positive experience with the Marshall Protocol starting with lower than usual starting doses of minocycline and going quite slowly at: http://members.aol.com/SynergyHN/MPjcw.html .
Joyce Waterhouse, Ph.D.
Posted by Jellybelly (Member # 7142) on :
May I just chime in here. One thing about this protocol that REALLY grates on me. That is when we are talking about a medical protocol and people speak of Mr. Marshall as if he is an MD, HE IS NOT! He has a PhD. and can thus be rightly called a doctor, but he is not a physician.
I think Joyce that you compare him to other MDs and claim he is far more open minded then they are, as if he is one of them. You can not compare an apple to a banana. People are desperate to regain their health and there are plenty out there who will make this leap of faith based on the fact that this man is a Dr., but a doctor of what is rarely divulged. To call him Dr. under these circumstances is somewhat inappropriate.....but that is just my opinion, all be it a strong one.
Posted by JRWagner (Member # 3229) on :
Jelly...I agree 100%. You might not have been on this board when Marshall was first introduced. Dr. TREVOR Marshall has a degree in ELECTRICAL ENGINEERING from an Australian University, earned when after he moved to the U.S. He is NOT related, nor was he associated with the Dr. Marshall of the H. Pylori fame. To go to the Universtiy means nothing.
Trevor Marshall DOES NOT have an affilitation with ANY institutions of higher learning, and the "Research Institute" he lists has the same address as his home!!!
His wife, who is listed on his site, is a R.N. who works at a local hospital..nothing more.
Trevor Marshall also lists this (his wife's workplace) as his "Hospital Affiliation". Unreal.
No real research institution, unless you consider a room with a computer as such (then we would all be Research Scientists! no clinical or hospital studies. ZIP!
Last year a former member of T. Marshall's group exposed the fraudulent "Cure Rate" of the sarc patients...and she was bsically ignored. The cure rates for LYME patients was even worse...
We had people posting on Lymenet that claimed to have Lyme Disease and never had a diagnosis from an LLMD!!!! When questioned, they would start to attack the people who asked for proof! Yet, these people swore by T. marshall. Heck, we even had a Veterniarian, who does NOT work on humans, act as a PEER who supported T.Marshall. Am I missing something here? Just plain stupidity...
OK, some people might benefit as people do benefit from placebos as well, but no real research has been done here, just internet pilfering. All the papers published by Marshall have been compilations of other's work.
My LLMD, my Neuro ( a REAL research scientist at Cornell University Hospital, NY Presbyterian, and my IMMUNOLOGIST (from Johns Hopkins)will not use this protocol in any manner, shape or form.
In the future, everyone would be wise to check the credentials of anyone who gives advise on Lymenet, or in any other aspect of life.
A Phd in electrical engineering does not a Immunologist make...nor does this person have a right to do what amounts to be prescribing medicine, over the internet.What clinical experience does he have? NONE!!!
Will he treat us if we have severe complications?
Please....
Peace, love, and wellness, JRW
Posted by tickedntx (Member # 5660) on :
I am not a fan of Trevor Marshall, nor am I here to defend him, but the information presented above about his wife is incorrect.
Liz Marshall is a Registered Pharmacist, not RN.
The following is from the AutoImmunity Research Foundation web site:
Frances E (Liz) Marshall, GradDipPharm, RPh (Thousand Oaks, CA)
Liz Marshall graduated Bachelor of Pharmacy from the University of Adelaide in 1969. After tenures at hospitals in South Australia and Western Australia she gained her Graduate Diploma of Pharmacy in 1980. Since moving to the USA in 1982 Liz has practised as a Pharmacist at Westlake Hospital and the Los Robles Regional Medical Center.
She published her first paper "Quantitative prediction of concentration changes due to permeation of solutes through Polyetheylene containers during autoclaving" (PubMed ID:5451537) in 1970 (under her maiden name), and has subsequently published papers on "Microcomputer Capabilities for Pharmacy Inventory Control" and, most recently, on Autoimmune Disease.
[ 21. February 2006, 09:59 PM: Message edited by: tickedntx ]
Posted by my2haveit (Member # 7712) on :
Joyce compared Dr. Marshall to other ``doctors'', not ``MDs''. If Dr. Marshall claimed to be an MD, he would be a fraud.
I've been unhappy for a long time with our social custom of using the ``Dr.'' title for people with a PHD.
I think it's misleading, especially when a PHD moves into the realm of healthcare with products, information, and protocols.
That said, the term ``doctor'', when used in the realm of healthcare, shouldn't need to be limited to people with medical degrees.
Many of us have experienced ``quack'' healthcare from MDs. Many of us have experienced good quality healthcare from practioners who aren't MDs.
In my 60 years of experiences with many healthcare professionals, our best doctors have been my grandfather (a building inspector), our chiropractor, our cardiac surgeon, and especially our advanced nurse practioner.
I do wish we could be objective and more freely examine healthcare info from non-MDs who have a passion for researching and careful, responsible experimenting.
There are folks who have gotten better from Lyme thanks to herbalists, homeopaths, naturopaths, chiropractors, etc., even scientist/electronic tech inventors using home-built machines.
Lyme is such a complex, hideous, challenging disease. Even LLMDs are experimenting with each new patient. I don't know of any LLMD who can claim success at bringing all of their patients to recovery from Lyme. Some of their patients aren't helped, and some get worse.
We need all the options that can be effective, even if they work great for only some lucky people.
Thanks, Joyce, for making the effort to post for our learning. Disclosure: We decided to not use the MP. We use rife, instead.
Sue G.
Posted by Jellybelly (Member # 7142) on :
Sue said: There are folks who have gotten better from Lyme thanks to herbalists, homeopaths, naturopaths, chiropractors, etc., even scientist/electronic tech inventors using home-built machines. ================================================
And that is fine if that is your choice. So why not have Mr. Marshall be up front with everyone and let then know his being a doctor has nothing to do with medicine but rather Electricl Engineering. WHY? Because if he did, a huge portion of those looking into into this protocol would walk out in a heart beat.
Just be up front, how can you trust someone who keeps this large of a piece of info in the background?
Posted by my2haveit (Member # 7712) on :
http://www.marshallprotocol.com/, you will see the link for:ESSENTIAL INFORMATION ABOUT THE MP (Required Reading). Then the link: The Marshall Protocol -- simple explanations, History of the MP and Dr. Marshall's credentials.
It explains that his major switched to bio-medical engineering and his PHD clinical studies were done in hospitals. His PHD thesis was "Mathematical Modelling of the Insulin Glucose Homeostasis in Diabetic and Healthy Individuals".
If one wants to learn about MP from MP or AutoimmunityResearch websites, the info on Dr. Marshall's background is part of the introduction.
If it's mentioned on LymeNet by various posters, they may not mention it or know it.
If Joyce's links are clicked on, they lead to the info.
Hope this helps. Sue G.
Posted by joycejcwat101 (Member # 6848) on :
I also wanted to add, in case some people were not aware of this, that Dr. Marshall now believes that some people (a fairly small minority) may do better on the Marshall Protocol if they use a smaller dose of Benicar than has been recommended in the past.
It turns out that some people Herx too much when they use 120-160 mg Benicar/day. These people can try 20 mg q6h. This may also make it easier as far as the expense.
This change and the possibility that I discuss of starting at lower doses of minocycline (http://members.aol.com/SynergyHN/MPjcw.html , may make it possible for some who might have had trouble trying the Marshall Protocol in the past, to have an easier time.
Joyce Waterhouse, Ph.D.
Posted by joycejcwat101 (Member # 6848) on :
I think there would be a lot of Ph.D.s around the world who would be surprised to learn that their doctorates did not entitle them to be addressed as "Dr."
But, I certainly never want to mislead. I try to be careful to refer somewhere, in whatever I write, of the appropriate degree (e.g., I say at least somewhere in an article that it is Trevor Marshall, Ph.D., who I refer to, although elsewhere in the same article I may call him Dr. Marshall).
Joyce
Posted by Jellybelly (Member # 7142) on :
Ok, Joyce you bring up another point. I have followed the MP board for quite some time, just a few months after it was born. I knew one of the administrators for some time before the MP and was encouraged by her to come and learn about it. She encouraged me to ask questions and assured me that I would be speaking with someone who was VERY open minded and was NOT afraid of tough questions.
I also know one of the MDs who was just beginning to use the MP and felt it held great promise. The reason I was interested is because I herx severely on ABX, enough that I have eneded up in the ER with racing heart and BP on the floor. I have some heart issues and was concerned of what was happening with my heart while herxing, later I would learn that Mr. Marshall speaks of this very situation and calls them heart herxes. He proclaimed then that the massive doses of Benicar would relieve the herx symptoms and decrease any danger of a heart herx. Sounded good to me, I researched and eventually asked my doc to give it a try and he agreed too.
Now keep in mind that we were told that the herx WOULD be reduced dramatically, but, you MUST take the full dose in order to recieve the FULL blockade, and you MUST stay out of the sun and avoid Vitamin D like the plague. All of this I did, or so I thought.
I did the 2 weeks of Benicar first and did fine, then I added the ABX starting at a low dose since I have herxed so badly at the higher doses. With each dose of Benicar I became weaker and weaker and weaker, to the point that holding my head up became difficult, LITERALLY. I was so weak that chewing food was exhausting, even just a few bites. I was so tired and fluish. I was wondering how this was less of a herx.
I posted my concerns on the board and was told right off that I wasn't avoiding the sun, well I had been, but then I realized that I had to become a cave dweller, with blinds drawn, wearing black clothes like Darth Vader, dark glasses all of your waking hours, and THIS was why I was not having success.
Well, if that was what was required it was going to be next to impossible, I have a faimily and so was pretty much told that I was a poor patient if I wasn't going to COMPLY. I still was interested and wanted to make this work, because others that I knew and had a degree of faith in their opinion, this was the key....Benicar.
I tried to ask questions. I asked over and over if I could use a lower dose and the reply was ABSOLUTELY NOT!! Instead of a lower dose, HIGHER ones were encouraged. Eventually I was looked on as a renegade, someone who was there to tear down the MP. I was told not to ask these kind of questions on the board. At the same time I was encouraged by those in higher positions on the board to keep asking. They were unhappy with the replys I was getting. They were equally unhappy with the dodging of the questions. This eventually lead most of the administrators leaving the board. I wasn't the only one who was treated like this. Others who WERE doing it all were treated terribly. Pointing out the problems WAS NOT ALLOWED.
I asked about lower doses of ABX, NOPE got to do it Mr Marshalls way or hit the highway.
Then what do you know, NOW it's OK to take 20 mgs of Benicar. Give me a break, and now Mr. Marshall takes the credit for tweaking his protocol. Give me a break. There were a lot of heavy thinkers there and they offered idea after idea. They are ALL gone now, because they were treated with such disdain, some were even banned, administrators and all. I was threatened numerous times.
There were a lot of people, including myself that should have NEVER taken that massive dose of Benicar, it was dangerous for me. I have since learned that I have adrenal insufficency enough that I am now on cortisol and Benicar lowers hormones like thes even further. No wonder I couldn't hold my head up.
I willingly offered myself up as lab rat to a man who knows nothing about medicine. I was a stoop.
What a joke, NOW he says take 20 mgs. of Benciar.....whatever.
Posted by docjen (Member # 7510) on :
Thanks for the update, Joyce. I have been on the lower dose of Benicar since starting MP because of the reason you cite. I have been on MP for about 8 months and making some progress and am hopeful for more.
Interestingly, however, when I posted a herx-related question on the MP forum, the forum administrator read on my tag line that I was only on 20mg of Benicar and I was promptly told in very clear terms that I am NOT actually ON the MP as I was not at a high enough dose of Benicar, and I should not post on the forum again. So....I haven't.
Posted by TX Lyme Mom (Member # 3162) on :
The MP is the "real deal", but it's definitely not for everyone! For example, I have a neighbor who is a Lyme treatment failure, now classified as a CFIDS patient (her self-description). Although I know that the MP is the best answer out there, I do not recommend that my friend attempt it at this stage of her life.
She is a busy mother who feels it's very important to put her children first, and the MP lifestyle and strong Herxing would make it impossible for her to do that. Therefore, she has wisely decided to wait until her children are older and more independent before attempting to start the MP herself.
Our daughter is doing fantastic with the MP now, after 19 months. She began Phase 3 just this last month, in fact. The MP has turned her life around, but she still has a good ways to go before she can claim full remission. She is planning a trip to Europe this summer -- something which she could not have done prior to the MP.
For a long time, I kept pretty close track of all the Lymies who had started the MP. Somewhat over 50% did drop out, but in almost all of those cases I was able to see why they had failed and how they might have been able to make it work if they had not given up too soon.
Furthermore, I'm aware of at least one MP doctor who has been quoted as saying that Lymies do seem to have a somewhat harder time of it than other patient groups do and that Lymies have to take more frequent breaks from the MP and then start over again and again in order to achieve stability on the program. That doesn't surprise me the least bit though because I am keenly aware of what an MP patient must go through in order to reach that point of stability to be able to succeed with the MP.
The MP is at least as difficult as doing IV antibiotics, if not more so, and both of these two therapies are probably even more difficult than chemotherapy, in my books -- but that's my own personal opinion, of course. Not everyone has as much trouble with IVs as our daughter did though, so this comparison might seem ridiculous to anyone who didn't go through what she did while on IVs for 17 months.
I wish I had enough time to go into more detail about our daughter's MP experiences, but that will have to wait till later. I'm on my way out of town for the next few days, but I'll try to return to this topic -- or maybe start a new topic thread instead, since this one is already so long -- when I have a little extra spare time.
[ 25. February 2006, 03:02 PM: Message edited by: TX Lyme Mom ]
Posted by TX Lyme Mom (Member # 3162) on :
quote:Originally posted by joycejcwat101: I just wanted to let you all know that an approximate transcript from the presentation announced above is now online at http://members.aol.com/SynergyHN/transcript . It is a discussion of the Marshall Protocol in Laymen's terms including over 20 questions and answers regarding the Marshall Protocol and related topics. I also discuss some of the things that helped me before the Marshall Protocol.
Also, you can read about my own positive experience with the Marshall Protocol starting with lower than usual starting doses of minocycline and going quite slowly at: http://members.aol.com/SynergyHN/MPjcw.html .
Joyce Waterhouse, Ph.D.
PS -- I forgot to call attention to this recent message (from the bottom of pg.1 of this topic) in my previous post (above). Joyce's newsletter about the MP is the best one that she has ever written so far. I highly recommend that you click on the link which she provided and read her oral presentation about the MP to a Lyme support group in her area. It's fantastic, and her Q&A section of that transcript will answer many of your questions which were raised in earlier responses to this topic thread. Don't miss it.
Posted by Thomas Parkman (Member # 3669) on :
Dear Members of the List:
I am delighted that somebody is benefitting from the Marshall Protocol. However you should be advised that the protocol as far as lyme patients is concerned is dangerous. It has put people in the hospital with cardiac reactions. The long term effects of benicar, particularly at the large doses recommended, have not been established.
I was on the Marshall Protocol and got very, very sick. The pain was awful. I then developed intestinal bleeding. Benicar is used as an anti-inflamatory medication. I then learned that in the early days of using such types of medications that every year something on the order of 15,000 people developed gastro-intestinal bleeding and died from it.
As far as Lyme disease is concerned the MP is just not a good idea. It is too dangerous, too painful and the effects of it are unknown. While it may help or even heal you, it could also possibly kill you. It is a game of Russian roulette. I would avoid it. Thomas Parkman
Posted by TX Lyme Mom (Member # 3162) on :
Thomas Parkman's experience with the MP is a prime example of why it is absolutely essential that MP patients are very, very careful about avoiding strict light exposures and about following the MP diet by avoiding all sources of dietary vitamin D, whether naturally-occurring or whether fortified with synthetic D.
Our daughter did experience severe cardiac symptoms on several occasions at first, but knowing what we know now about how to avoid that problem, I feel confident that it should be possible to take precautions against this kind of serious Herx symptom. Likewise, with the GI tract Herxing.
There are indeed good ways to manage and control the nature of one's Herxing safely -- provided that one is well-informed and well-prepared before ever taking one's first dose of Benicar in order to anticipate and prevent the kind of awful, horrid experience which Thomas endured.
The earliest MP volunteer human guinea pigs have paved the path, and the board staff at the MP website have a much better grasp now about how to help guide patients so that no one should have to suffer as much as the earliest MP patients like Thomas Parkman did.
I reiterate, however, that the MP is definitely NOT for everyone. It's very important to understand in advance what to expect and also to evaluate whether one has adequate social support in place to insure a successful venture.
Otherwise, one should wait until an opportune time when it will be possible to attempt this difficult and challenging protocol successfully -- in order that one's chances for success with this promising new therapy will be maximized and the risk of adverse events reduced to an absolute minimum. The potential benefits of the MP are well worth the trouble.
Posted by joycejcwat101 (Member # 6848) on :
Although some people have had a rough time on the MP, I wanted to also add that not everyone does -- some find it helps them right from the beginning, more than anything else they have tried. I am someone in this category and you can read about my experiences at http://members.aol.com/SynergyHN/MPjcw.html .
I would also second Tex Lyme Mom's statement that new things have been learned that have made it easier in many cases, so if you had a rough time in the past, you might have an easier time now.
I do agree with JellyBelly that it would have been better if they had recognized that lower dose Benicar was a good option for some people much sooner rather than assuming everything was related to not complying with regard to light exposure. They did have some cases where people were not complying with light exposure and were reluctant to admit it and they probably over generalized about how widespread that was. In any case, I am sorry that she had a bad experience (and sorry too, that Thomas did).
And I also agree that sometimes the MP staff and Dr. Marshall do not welcome new ideas as much as one would like, if one is in favor of a new idea. But it can be hard, since so many people have so many new ideas. Also, there is, I think, a general tendency for protocols to be conservative and resistant to change what they believe has worked for others. But, I think it is encouraging that change did finally occur on the Benicar dose issue, though unfortunately rather late. But I would add that of the people who have experimented with changing the Benicar dosages and reported their experiences on the MP site, the number of people that do significantly better at the lower dose is fairly small, so JellyBelly's experience is apparently not that common.
There is a point of disagreement I have with the MP and I mentioned it before and discuss it in my above article on my own experience. I think that some people, especially with severe or long term CFS or Lyme do better starting at very low doses of minocycline (like 3 mg). A number of people have been successful doing this. I trust that in time, if my view is the right one, it will prevail. It isn't accepted now by the MP staff, but I respect their opinions and think that further data from people who try it the way I did will eventually settle the question.
I accept the fact that people of good will may disagree. I think it is beneficial for one's own emotional state and to help one judge things cooly and calmly to assume that everyone is doing the best they can, based on their experiences and their limitations in time and patience and other qualities -- no one is perfect. I know that Dr. Marshall is not always patient and tactful in his answers and I know this can irritate people. I wouldn't be surprised if he wishes he naturally had a greater level of these qualities as well as more time, but we all have our limitations.
In my Q & A section of my article, Question 13(http://members.aol.com/SynergyHN/transcript3.html ) I discuss why I think the MP site is not as open as it used to be or as it might be. I still think it is fairly rare to find a site where the researcher who developed a revolutionary new protocol is available to answer questions from the general public for free. He may not have the time or patience to attempt to answer as wide a range of questions as we all might ideally like, but he still does respond often times, despite being extremely busy.
With regard to the Benicar dosage, the 20 mg refers to 20 mg taken every 6 hours. They regard this currently as the lowest dose that is sufficient. So, if one is progressing using 20 mg once a day, this is interesting, but must be regarded as a modified MP or as an experiment.
I personally, have experimented with my Benicar dosage. I should repeat the experiment to be more sure, but when I tried a month ago to use only 20 or 40 mg per day, I found it to have no effect either alone or with antibiotics. Whereas if I took a dose of 80 mg/day, it increased the Herxing (in other words, it allowed the low dose antibiotics to be more effective and generate a Herx).
In my own case, when I increased up to 160 mg Benicar, I had a little more Herxing. Some people have a palliative effect at 40 mg every 6 hours and even can go up to 40 mg every 4 hours and have it help dramatically with heart or other herxing. But unfortunately, there is much that is individual in people's responses to the MP -- not everyone responds the same way.
I also should note that for cardiac and other severe herxing, they can be bad on other protocols too, and people can end up in the hospital taking oral or IV Lyme antibiotics using other protocols -- this is not at all unique to the MP.
I don't recall hearing anyone report in the last 6 months on the MP board having to go to the hospital for a Herx on the MP. Perhaps this is partly because of the modified phase two (which uses a different antibiotic) that people with cardiac problems are advised to use. So, here is another sign of improvement in the protocol through recommending the modified phase two for some people (I think it is preferable for most people, as you will see in my above article on my experiences). The MP is still a work in progress and I have no doubt that the protocol will continue to improve.
To my knowledge, there is no evidence that Benicar reduces cortisol, but would welcome JellyBelly referring me to this evidence if it exists and I am not aware of it.
Also, Thomas Parkman's statement that a drug analogous to Benicar has caused such severe gastrointestinal damage is not anything I have ever heard before. I would be grateful to Thomas if he could direct me to a web site or other source that backs up this assertion, so I can investigate it.
Also, just to show that I'm by no means the only one having success with the MP, you might want to refer to some selected Success Stories ( http://marshallprotocol.com/forum2/1593.html ). But one must keep in mind that it is still relatively early days for Lyme and CFS patients on the protocol. And certainly some may choose to wait until there is more evidence and until more developments in the Marshall Protocol.
But, I personally think the risk/benefit profile of the MP vs high dose antibiotics, oral or IV (with their many possible side effects, like Candida or C. dificile problems) is in favor of the MP (though it is true, perhaps not for everyone at this time).
Thanks, Joyce Waterhouse, Ph.D. http://members.aol.com/SynergyHN (you can see this web site, if anyone wants to know about what sort of things I have written about over the last 10 years, the things that have helped me, or my background, or would like to be put on the list for occasional free email newsletters or updates)
Posted by Jellybelly (Member # 7142) on :
Joyce, what I said was, "I have adrenal insufficency enough that I am now on cortisol and Benicar lowers hormones like these even further". Low cortisol was the indicator of my adrenal problem.
Adrenals don't produce only cortisol there are other hormones produced by them as well. The one in particular that I was speaking of was aldosterone. So if your adrenals aren't working you are likely not getting enough aldosterone either.
Aldosterone is responsible for some really important things like blood pressure and controls how much salt we retain which is important to blood pressure. To much aldosterone and your retain water, not enough and you loose fluids which in turn decreases blood volume which in turn reduces blood pressure. Follow? Low enough BP due to low blood volume makes you very weak.
Before I knew any of this, I did know about myslef that I craved salt, and had a very low BP and rapid heart rate. Salt cravings are a symptom of adrenal insufficeincy. I have Nuerally mediated hypotension and dysautonomia. This I knew, the adrenal part I only found out about 7 months ago.
Now add to those factors, Benicar. Benciar lowers aldosterone which in turn prevents salt and water retention, thus lowering BP by reducing blood volume. My BP on the Benicar was even lower still.
Here is some info that is pretty much an easy read. =================================================
......let's get a basic understanding of how angiotensin works in the body. The renin-angiotensin-aldosterone system (RAAS) influences blood pressure. In the normal response to decreased blood pressure or vascular volume, the proteolytic enzyme renin is produced in the kidneys. Renin circulates throughout the body via the bloodstream and is converted to angiotensin I, which is inactive. In the presence of angiotensinconverting enzyme (ACE), angiotensin I is converted to angiotensin II, which is a powerful vasoconstrictor.
Angiotensin II latches onto the angiotensin II receptors in vascular smooth muscle (blood vessels), the kidneys, the adrenal glands, the heart, the liver, and the brain. This has repercussions throughout the body, causing:
* increased release of aldosterone from the adrenal glands (which sit on top of the kidneys), leading to salt retention and further water retention.
Once the blood pressure is adequate, the normal response is for the RAAS to slow down or turn off. In patients with hypertension, however, the RAAS doesn't turn off--and that's where problems begin.
Angiotensin receptor blockers are drugs that block the angiotensin II receptors, which are found in tissue throughout the body, including vascular smooth muscle and the adrenal glands. Blocking the angiotensin II receptors causes:
* decreased aldosterone secretion by the adrenal glands, resulting in less water and sodium reabsorption by the kidneys =============================================== Thw whole piece is at: web page
So IF you already have not enough aldosterone then taking Benicar which will lower aldosterone could put you into some serious trouble. Adrenal insufficency is VERY common in CFS/FM/Lyme, that is a fact.
The real problem is that Mr. Marshall refuses to acknowledge that. I asked that question over and over about low BP and I was treated like I was too stupid to ask questions or even understand his replys. When I did find out about my adrenal insufficency and I asked about it on the board, this is the reply I got. I saved it.
"Jelly,
Your post about Benicar and adrenal insuffiency has been moved off the public message board because the discussion has deteriorated into a pointless argument. (There were about 3 or 4 replys, not making for an arguement) We have a huge cohort of recovering patients who are following the MP as it is written, we have carefully described the science of Th1 inflammation and we have nothing to prove to folks like you who cannot or will not accept our explanations.
Please do not post any more messages like this.
Best,
Meg"
I wasn't given an explanation, they didn't have one, like they ever do to any of my questions. They just remove them, so us dumbies aren't confused.
I am glad Joyce that you are recovering on the MP, and I know there are others. But the fact is there are whole websites with people who had things go terribly wrong. Thomas and myself are just 2, others are out there. I know you are exceited about your own recovery, just be careful how you word things, this isn't the silver bullet, it is not the one shoe that fits all. There are things that can go wrong. People have the right to hear the down side of a treamtnet they are considering. Don't you think that is fair?
Posted by Thomas Parkman (Member # 3669) on :
Dear Members of the List:
For the record the diet protocols were strictly followed in my case. I did use the sun glasses but this is South Carolina. I could not just retreat into a cave. This was neither possible nor practical. It seems to me the issue of the very real dangers inherent in the protocol, even when you follow it with utmost rigor are being ignored.
I submit that if the slightest exposure to sunlight is going to cause you to get as sick as I did then that protocol-pardon my french is a bucket of horse crap. You make the "slightest slip" and the results are disastrous. Too many people have ended up in emergency rooms from being on the Marsahll Protocol. The thing is dangerous.
In my case it was not the pain or the rest of it, it was the development of intestinal bleeding. That can kill you. Thousands used to die of it every year. The long term effects of massive uses of Benicar as an anti-inflammatory medication have not been studied. It is known that a number of other anti-inflamatory medications have proven to be dangerous and have caused peoples' deaths. Given the results so many people have had which are so negative those people blithely advocating it are doing a grave disservice and should stop it. Thomas Parkman
Posted by Bothrops (Member # 7393) on :
Thanks Thomas for letting us know that. I have been looking into the MP for some time and never read anything dangerous about it.
So is a LLMD's way any better? I wonder how many people have died under other protocols, picc's and ports?
For gods sake 4000mg a day of augmentin can not be healthy!
Posted by docjen (Member # 7510) on :
Thanks, Joyce, for your thoughtful response on the MP. It seems that Dr. Marshall has added a significant piece to the TH1 debate in the use of Benicar. This is a huge area for research, and hopefully we will learn more about its uses and potential dangers in the next few years.
To clarify a point you brought up, I personally am not taking 20mg of Benicar once a day. I take 20 mg. every 8 hours (which as you mentioned is apparently still not officially the protocol, and in Dr. Marshall's opinion sub-clinical). Another point to add: you mention that you have not read of MP users going to the hospital recently, which is very good! Hopefully they are not. But as a researcher, you must understand the very real potential on this tightly controlled forum of the potential for selection and/or information bias: two very serious threats to valid research.
Posted by bpeck (Member # 3235) on :
TXLyme Mom:
You are totally right when you say ist's not for everyone.
As a matter of fact, IMO, it is for a only very FEW.
Your daughter, who has suffered with Lyme has been treated many times in the past over several years with standard abx.
You report that her case responded to this protocol (or a variation) following a fairly standard several year antibiotic therapy for Lyme. This is an important point, and it's similar to Scotts case, who benefitted greatly using low doses of Benicar (and intermittant abx) ** AFTER ** his Lyme was about 75% under controll and AFTER he'd done a more standard abx therapy..
This is also an important point, especially now that we know the Lyme spirochete can build resistance to some abx.
Jelly is doing a good job explaining how some dangerous side effects of this protocol were passed off as a herx- or the patient was blamed for the side effects.
And there were other ways of silencing people who were not in total agreement: editing, banning from open discussion or from the internet site, or defamation law suits.
In closing: TxMom And Joyce- while it's obvious you two are articulate and informed salesmen for the protocol.
It's important that people who were also intimately involved with this protocol, (but may have less than glowing reports), be able to tell their story also WITHOUT being made to feel thay THEY somehow contributed to it's failure or that their opinions are somehow personal attacks.
Barb (one of the banned)
Posted by Digby (Member # 3888) on :
To make a long and rather ugly story very short...I followed the MP protocol to the letter and it nearly killed me. It has taken a very long time to recover to my previous poor state of health. YMMV
Posted by joycejcwat101 (Member # 6848) on :
re JellyBelly's comments:
Studies on Benicar have shown side effects profiles not much different from placebo.
I agree that with any relatively new drug, especially used at higher than usual doses, there are possibilities of problems, particularly in subsets of people. But to put it in context, see these links: http://marshallprotocol.com/forum2/11.html where a number of studies are quoted.
Also, see the official information on Benicar from the government is at http://tinyurl.com/asyfc :
And here is the beginning part of the article on Benicar that JellyBelly posted, which is not so negative sounding:
Angiotensin-converting enzyme inhibitors and angiotensin receptor blockers may be the best thing for your complex patients with hypertension or heart disease. Here's why.
ANNE WOODS, RN, CRNP, APRN,BC, MSN Clinical Director of Journals * Lippincott Williams & Wilkins * Springhouse, Pa. Nurse Practitioner * Chandler Hall Wellness Center * Newtown, Pa. You can administer a lot of different drugs to treat hypertension or heart failure. But what if the patient has comorbidities that put his kidneys at risk, like diabetes or renal insufficiency? Then some of those drugs could be bad news because they don't preserve renal function, always a key concern for patients with diabetes.
Fortunately, two types of drugs--angiotensin-converting enzyme inhibitors (ACE-Is) and angiotensin receptor blockers (ARBs)--are renal protective, making them good choices for complex patients, such as those with hypertension, heart failure, and diabetes or those with metabolic syndrome. In this article, I'll take a closer look at these drugs.>>
There is a possibility of some effect of Benicar on aldosterone, but very few, to my knowledge, have found this to be a problem, and even then, as far as I know, the problem has been assumed rather than tested for. And in the case of JellyBelly, perhaps a lower dose of Benicar would have worked. It may have been the Benicar at those high doses was just too high in this case and was causing too much Herxing by itself. I wonder, if you tested your aldosterone and/or your cortisol before and after the MP?
I have been tested as having low cortisol too, and on several occasions have taken physiological doses of it for periods of time and it did me no good, but I wish JellyBelly luck with it.
I think it is important to dring plenty of water and consume plenty of salt on the MP if one is prone to low blood pressure. Also, I have found that lowering my food reactions using a free at home objective pulse test has helped with my blood pressure and many other symptoms by helping me to more accurately identify my food and supplement allergies/sensitivies/intolerances.
For people who are very sick, I think looking into their hidden food reactions, like I did would be a good idea ( I refer to this in my talk transcript and several articles I have written, see http://members.aol.com/SynergyHN/transcript ). I think this was very important for me, as I emphasize in this article. For others who are quite sick, it might be a good preliminary to trying the MP. I think it probably also reduced the stress on my adrenals caused by continual food reactions (and I know it helped my immune function, see Issue 2 on my case history at http://members.aol.com/SynergyHN ).
re Docjen's comment: using 20 mg, 3 times a day of Benicar, I personally think this might be enough for some people, but it may be quite variable. I have heard through the grapevine that a fibromyalgia group in South Australia has been using somewhat lower doses, like 40 to 60 mg daily, as a sort of modified MP. So, maybe it would work for some population groups. I have heard they are making a video about it and can let you know when it comes out.
Barb, I certainly don't mean to imply that others don't have the right to share their negative experiences on the MP -- I hope we can learn from them and I hope I can help people, especially those who have had negative experiences on the MP, in whatever direction they decide to go in for their treatment. I have been sick for 20 years, and for about the first 10, I was more than 90% bedridden. I learned certain things that have allowed me to improve considerably. So, I do think I have had a lot of experience and have done a lot of research that may prove helpful to people. I suffered so much for so long, I determined that I would make something good come from that suffering if I ever got better.
I just hope we can keep the dialog friendly and not let past disagreements (on the MP board or elsewhere) keep us from discussing things with mutual respect or at least giving one another the benefit of the doubt with regard to intentions.
I have and continue to try to share information on any therapy that has helped me or I see potential for and I particularly focus on ones where there isn't any financial incentive for me or others to write about it (since I know these types of therapies will be ignored more often -- unlike patented products and multi level marketing). Anyone can see by looking at the newsletter that I write (for free on the SynergyHN web site) that I have covered a wide variety of topics for which there was no financial incentive and I have to say, I don't care for the implication that I am a "salesman" for anything. My motives are purely to try to help people by sharing information to the best of my ability. That is the truth and you can choose to believe it or not.
re Thomas' comments: I believe (correct me if I'm wrong) that Thomas is referring to anti inflammatories of the NSAID or COX 2 inhibitor class (like Vioxx), since these are the sorts that cause gastrointestinal bleeding. These are completely different in their mode of action and effects on the gi system, so I don't think it is a fair comparison to Benicar. Very few people have reported any gastrointestinal problems that persisted with the MP. Some certainly have had them as part of Herx, but they usually resolve in time.
I also disagree that so many people have been having to go to the hospital on the MP at any time, and especially in the last 6-12 months.
And not everyone, by any means, has to be as super careful with regard to light as Thomas indicates -- especially with the use of ketoconazole cream. There are some people that do need to be more careful than others, but not everyone does. And many people are still able to work when on the MP.
I hope to describe the MP and my experience -- I try to let people know about it and that some people are being helped by it, but I encourage people to study it for at least several weeks to decide for themselves if they want to try it. I admit the data is incomplete, and if people choose, they can watch and wait and try it later when there is more data. But in my case, I have to say that I'm glad I didn't wait. And it isn't like there aren't dangers to other approaches.
While I agree, that there is the possibility of some bias on the MP site, I think in groups outside the MP site, the anti MP view may be somewhat over represented and very forcefully presented. People like myself, who present a generally pro MP view, are sometimes discouraged from posting in forums like this and post only in the MP board. So, anyway, here you are getting the pros and cons intermixed. Like I said, I think that significant improvements have been and continue to be made in the protocol, so some of the criticisms from those who tried it a year or a year and a half ago, might not be as applicable today.
Best wishes to everyone and good luck on whatever path to health you choose,
Thank you, Joyce, for your very thoughtful comments. This is definitely a dynamic area of medicine, and we will most certainly see changes in all treatment protocols in the next few years (hopefully!). It will be watershed if any new studies and research on lyme and lyme treatments and protocols can make it into some high-impact journals so the medical establishment can begin thinking of lyme in a new paradigm.
Posted by Lonestartick (Member # 2151) on :
TXLM, Joyce,
Wasting your time here in this venue is just silly. The majority of the Lymenet crowd already has their minds made up and that's fine. They are happy, so let them be.
I don't waste my time here anymore because I am no longer looking for answers and because they were so unsupportive of me when I first began the MP program that I felt free to leave LymeLand behind and to move on. I did try to come back and post progress on occasion, but I was subject to so much harassment here at LymeNet that it was simply no longer worth the effort.
The other members here just did not understand that without insurance and with my LLMD retiring suddenly in the midst of my most severe relapse, that I felt I had no other recourse. I was desperate for answers and I had to find a better and more affordable solution fast because I was about to fall through the cracks after doing 17 months IVs plus various oral antibiotics - all of which were much more dangerous than the MP. Going the IV route did land me in the ER, in fact! The MP has proven far safer for me than IVs, but I have been very careful to comply with the lifestyle after realizing just how crucial it was to ensure success.
Thankfully, the MP option came along at just the right time and it has proven to be my answer. I do not suggest that the same answers work for everyone for a variety of reasons. Also, the lifestyle restrictions would be too difficult for many. However, I had already lost my lifestyle, so it didn't matter to me. I had nothing left to lose.
Trevor's disease model made sense to me because I already understood the pathogenesis of borreliosis, but I was still very skeptical about whether or not it would work for me with my lab-confirmed co-infections. I was also very worried because I had consistently had very low blood pressure since becoming sick. Nevertheless, I studied the concept and made my own decision about it. I realized that it was a slow process and committed myself to giving it a fair chance. No one was more surprised than I was to find out it actually did work exactly as predicted.
I have not participated much at the MP board, because I was very uncomfortable with the tone of the board and I found that the negative vibes there greatly hindered my ability to stick with the protocol. The tone of that board actually added to my skepticism and my overall doubt. I watched them run off many good people who had much to offer.
That said, the protocol itself is the real deal. I have been on the MP for 19 months and I am in phase 3 and feeling almost completely recovered. My immune system is fully functioning. (I will not claim remission until I am 5 years out; so don't ask me about that.)
I am living proof that it works, and I don't regret my decision to try it in the least. However, I think that sometimes the most important thing that a patient can do is to heal and to begin living a normal life again. I have given this much thought and I have decided that my best and highest purpose is to move on and to start living life to it's fullest -- away from the forums. Perhaps someday, someone will remember that someone else really did get well and that will give them the strength and determination to find their own answers.
Joyce, Tex: Leave this forum behind and don't look back. Go out there and seize life and enjoy it. (Tex is my Mom, so I hate to see her slammed as a salesman for a protocol that she is not affiliated with.) The few patients who are seeking what you have to offer will find a way to locate you. Goodness knows, it's hard enough for these patients when they are suffering, without topics like this one that become so negative and divisive, with people intent on spouting alarmist nonsense.
Wishing all of you health, healing and the ability to once again live life to its fullest, especially you Thomas - I know you have endured far more than your fair share of suffering and you have been a true trooper. I commend you for your tenacity and your ability to persevere with your keen wit and sense of humor intact. I pray you will find your own lasting answers. I am going to go back to enjoying mine.
Likewise for Digby, who I know is sincere, because he had such a difficult time with the MP when he hit a ``Perma-Herx'' and didn't know how to get back out of it. Digby, we've learned some really good, new coping strategies in recent months in case you ever want to consider a new attempt at the MP. If you don't wish to try it again, I certainly understand.
I have turned off my PM function at this website because I do not enjoy being harassed. I would normally check back to make sure that nothing I said in this message was taken the wrong way, but I am going to be traveling this week and that means that I may not have internet access to do so.
Wishing each and every one of you health and healing, LST
Posted by Jellybelly (Member # 7142) on :
Wow LST, it is nice to actually realize who you are. I was very interested in your progress at the beginning of your journey and had some correspondence with your mom. I am glad you are doing so well.
I think you need to try to understand where some of us are coming from. Your experience has turned out well, but many of us have had a terrible time. When people like you and Joyce coming proclaiming how wonderful the MP is, understand that what seems like anger is not really targeted at you, but rather the author of the said protocol. We were treated like crap. Even you said yourself that you did not go to the board because of the negative atmosphere. Well imagine for a minute you were the direct target of that negativity. Imagine that you were now the one who was to stupid to follow the protocol. Imagine that you were banned for asking questions when you were sincerely trying to find help and answers to the reactions you were having. Imagine not getting support or having anyone care enough to try and find a solution but rather be blamed for your reaction.
Ya, there are some very angry people, who feel there are problems and that if this thing is going to work for the masses, there needs to be questions and solutions to problems. If you can get as sick as Thomas did from a moment of light this thing needs work. How can anyone predict who will be the one to react so severly? Can you or Mr. Marshall? Not at this point and to just make it sound as if, if you just do it right you will get well is crazy to say the least.
You know what, I have been sick since I was 12, I am 49 now. I have been standing on deaths door. BUT, I am in remission and to a very high degree WITHOUT Benicar and I know this isn't what anyone wants to hear but with hardly any ABX either. What worked for me? I think it has something to do with the heparin I was on for 3 years. Mr. Marshall is very opposed to heparin even though other docs still use it while using the MP. Heparin has some ability to block angiotensin, but to a much lessor degree. Maybe it has something to do with that, meaning the reason I am at about 85-95% remission. I live a VERY full life right now and have been for several years. Thing is, it might not work for everyone, and for some it might even be dangerous, no matter how much I want people to be well like me.
What works for you obviously didn't work for me or Thomas or many others I know of. We don't feel it is safe for people like us. Don't be irritated with him or me because it wasn't as great as it was for you. It goes both ways. You did awesome and that as I said before is great. People just need to be able to discuss the possibility of problems and that is something that is not allowed, on that website. Just pretent everything is peachy is the motto.
I am always glad when someone gets their life back. Enjoy yours.
Posted by Bothrops (Member # 7393) on :
Lonestar, I dont agree with you. Not everyone here is that narrowminded. I am open to anything, even the posibility that I dont have lyme!
I would love to try the MP. I think the llmd's way of thinking stinks. Just fill you full of abx for a couple plus years and hope for the best.
So how does someone in SC on medicaid sign up for the MP? Where do I go, who do I see?
Please let me know. In my previous post I was being a SA, some of the folks here bring that out of me.
Thanks Joyce.
Posted by tickedntx (Member # 5660) on :
There is no doubt that the mp is a very difficult protocol to follow, and that there are some risks. There are risks to every protocol, and each patient will weigh and experience them differently.
I did the marshall protocol for almost six months, and I followed it very strictly. During that time, I became sicker, though not perilously so. I nonetheless made the decision to stop the protocol because I felt that I still had too many other untried options to continue with a protocol about which there were still so many unknowns.
I set up mp.com for marshall and served as the board administrator for seven months, very reluctantly for about half that time. The mp is like sausage: it looks much more appealing if you don't know how it is made... Had I not seen what goes on behind the scenes for so long, I might very well have stuck it out. Who knows.
I absolutely do not rule out the possibility that if I had stuck with the mp that I might be doing much better now. It is also possible that I could be much worse. I will simply never know.
I also have not ruled out going back to the mp at some point in the future if I reach an impasse at which many other Lyme protocols have failed, AND when more is understood about the mp by LLMD's.
There needs to be open, objective discussion of the mp, devoid of censorship and emotion so that patients have access to the facts. (Think Joe Friday.)
mp.com is pretty much devoid of emotion, but fraught with extreme levels of censorship. Here we can have open discussion, but people seem to struggle to suppress their anger, though I'm impressed with the general tone of this thread compared to threads past.
Please don't run off people who have done well, and please don't criticize people who are reporting their bad experiences. All needs to be openly discussed.
Suzanne
[ 28. February 2006, 10:05 AM: Message edited by: tickedntx ]
Posted by Bothrops (Member # 7393) on :
Is there anyone in SC that is on the MP?
Posted by treepatrol (Member # 4117) on :
Who is cured of LYME?
Anyone?
And how long have you had NO symptoms of Lyme?
Is it the benicar or is it the abx/antibiotics?
Posted by tequeslady (Member # 6832) on :
I was on the Marshall protocol and used to frequent the website.
My experience? It didn't work for me; but, hey, it might work for you.
Plus, the way people were treated on the Marshall website was horrible. I saw people asking genuine questions and being castigated.
Reminded me of a cult.
There's been a lot written about this protocol on lymenet. Just do a search.
Posted by bpeck (Member # 3235) on :
Lonestar:
I'm very glad you're feeling better, and understand wanting to get on with your life and spending less time on forums.
But,
I think you are having difficulty understanding the difference bewteen true harrasment, and the real desire for an open and fair discussion on the pros and CONS of any therapy (or topic).
To disagree is NOT the same thing as harrassment. To discuss or question a protocol or a drug within a protocol is is NOT the same thing as slandering or harrassing an individual. To talk about good results but prohibit discussion on adverse results is supression and control - not meaningfull dialogue.
IMO the act of passive aggression has been raised to an art-form by some of the people on the site I'm not allowed to mention.
Good luck with your life- and good health to you. Barb
LONESTARTICK WROTE: TXLM, Joyce,
Wasting your time here in this venue is just silly. The majority of the Lymenet crowd already has their minds made up and that's fine. They are happy, so let them be.
I don't waste my time here anymore because I am no longer looking for answers and because they were so unsupportive of me when I first began the MP program that I felt free to leave LymeLand behind and to move on. I did try to come back and post progress on occasion, but I was subject to so much harassment here at LymeNet that it was simply no longer worth the effort.
Posted by Bothrops (Member # 7393) on :
hey tequeslady, people get castigated here too. All you have to do is question your lyme dx. Just question the whole "chronic lyme" theory. I think this sort of behavior is everywhere.
Everyone thinks they are right, they are even smarter than all there docs, except the llmd or the FFC's docs.
How long did you try the MP?
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by shelley: Bothrops, I was on it for 3-4 months but had to go back to work, HAD TO, and could not handle 40mg I think it was of Benicar q4h to counteract the light I was being exposed to. I felt it was too much on my liver and my gut told me to get off. That was over a year ago and I am doing much better, but not sure why. Don't know if I ever had Lyme for sure (I have herxed, but it still doesn't guarantee LYME).. if so though, maybe it went dormant 'cause I'm feeling good, knock-on-wood
Iam happy for you shelly! Posted by joycejcwat101 (Member # 6848) on :
You can also go to the http://marshallprotocol.com site and search for people from your part of the country and send a private message to them and ask them what doctor they go to.
To all, I think part of the problem (and I have had this problem too) is that we don't always mean what we seem to mean during a sometimes hastily written reply -- or it can be taken the wrong way. Perhaps a little more care in posting could reduce this tendency. Also, there is perhaps a tendency to let one's anger at past situations (like on the MP board) to affect our responses to one another here in the present.
Also, I would like to let you know that I am not part of the MP staff and have independent views on various subjects, but have done some volunteer work, particularly on scientific aspects of the protocol for the Autoimmunity Research Foundation (headed by Dr. Marshall).
I understand Lonestartick's view, but I will still post on Lymenet sometimes, because I do think people should know about all the options and like she said the other options aren't so perfect either.
And with regard to variations on the MP mentioned, I would be interested in hearing what they were and how they worked out. I think that when one breaks the MP rules, one can learn new things. And I hope to learn from people's negative experiences too.
But, I think there is danger in breaking the MP rules, too, so perhaps that is partly why the MP board has what is sometimes called a "censorship" policy that they use sometimes. I do know, though, from searching past posts a great deal, that the vast majority of old posts still remain there and have not been deleted, even when they are not favorable to the MP.
Once again, I repeat, that I tend to favor a lower initial starting dose and a slower approach in severe and/or long term Lyme patients than is currently recommended. So, this might also help someone who is considering trying the MP again, after initially having problems (see http://members.aol.com/SynergyHN/MPjcw.html ).
Best Wishes and With Hopes of some calmer future discussions (generating more light than heat, as they say),
Joyce Waterhouse, Ph.D
Posted by docjen (Member # 7510) on :
Joyce,
I hope that you do continue to keep us updated on the MP. No one has all the answers to this awful disease yet, and we have lots to learn and share.
I think that sometimes what comes through as negativity on the board in comments sometimes may just come from a feeling of being discouraged: a feeling of being lonely, scared, tired, depressed, and sometimes just abject hopelessness. If you have been sick with this disease for years and can't seem to find any relief, or even any supportive doctors, and you feel awful and tired....it would be pretty irksome to hear that "method X" (whatever that may be) is the answer, and it didn't work for you because you did it wrong. (If you have spent any time dealing with this healthcare system, you are not a stranger to patient blaming.) Or you can't get your doctor to prescribe "method X" because there is not significant research behind it yet.
Just my humble opinion....from someone who is on a modified version of MP but still very very very discouraged....
Posted by jarjar (Member # 8847) on :
[
[ 02. March 2006, 04:49 PM: Message edited by: jarjar ]
Posted by tequeslady (Member # 6832) on :
I don't remember exactly. More than 6 months.
Yes, people get castigated here too, but not en mass. What I noticed on the Marshall site was if someone had a genuine question about something about the protocol, they were ganged up on. It was like you weren't allow to ask a question about the blessed protocol. I found it very strange.
There used to be someone here from lymenet (actually, multiple people) that were kicked out of the marshall forum. One of those, as I recall, used to be a moderator. I can only speak to my personal opinion... and I still think the behavior was cultish.
Like I said, there was a lot written about this previously on lymenet so should be available with a search.
If it works for someone... I'm glad. It's definitely not for me though.
quote:Originally posted by Bothrops: hey tequeslady, people get castigated here too. All you have to do is question your lyme dx. Just question the whole "chronic lyme" theory. I think this sort of behavior is everywhere.
Everyone thinks they are right, they are even smarter than all there docs, except the llmd or the FFC's docs.
How long did you try the MP?
Posted by tequeslady (Member # 6832) on :
Yup...this is the kind of poor behavior from the moderators that I saw from the marshall forum.
It's ridiculous that Jellybelly was treated like this.
Furthermore, it sounds like they were WRONG, but were too busy defending their protocol to see it. The concern was not placed correctly. It should have been more to the effect it was having on the patient, instead of pledging allegiance to the all mighty protocol.
Just my opinion...
quote:Originally posted by Jellybelly:
The real problem is that Mr. Marshall refuses to acknowledge that. I asked that question over and over about low BP and I was treated like I was too stupid to ask questions or even understand his replys. When I did find out about my adrenal insufficency and I asked about it on the board, this is the reply I got. I saved it.
"Jelly,
Your post about Benicar and adrenal insuffiency has been moved off the public message board because the discussion has deteriorated into a pointless argument. (There were about 3 or 4 replys, not making for an arguement) We have a huge cohort of recovering patients who are following the MP as it is written, we have carefully described the science of Th1 inflammation and we have nothing to prove to folks like you who cannot or will not accept our explanations.
Please do not post any more messages like this.
Best,
Meg"
Posted by Bothrops (Member # 7393) on :
I have gone to there site off and on for 6 months just reading anything interesting and I have never seen anything that looked the way you desribe. However, I dont doubt your word.
What I dont get is the number of people here who have been on high amounts of abx for years with little change in there symptoms. But they believe, like they believe in god, that there llmd is right and the rest of the medical world is wrong.
I dont have that problem, im atheist. I would try the MP just as I would try rife. I can see that my llmd is not working. It has been a year, 6 months longer than you tried the MP, and I have felt nothing! What they are calling a herx, I call a real bad day and I had plenty before I started abx.
So how long have you been seeing your llmd? Can you tell me what makes his way better than the mp. If anyone could prove to me that the MP is more dangerous than your everyday llmd than I would think twice. I will not just hang it up because of some rude posters on a website.
Posted by TX Lyme Mom (Member # 3162) on :
quote:Originally posted by tequeslady: There used to be someone here from lymenet (actually, multiple people) that were kicked out of the marshall forum. One of those, as I recall, used to be a moderator. I can only speak to my personal opinion... and I still think the behavior was cultish.
Like I said, there was a lot written about this previously on lymenet so should be available with a search.
[/QUOTE]
Here's the link to the topic from last year which you have in mind. It explains how/why Paula Carnes was banned for trying to help a pediatric Lyme patient who was in serious trouble and who needed IV fluids in the ER.
I saw the handwriting on the wall and knew that he would ban me next for sticking up for Lyme patients so I left the MP website of my own volition before he had a chance to do the same thing to me.
Trevor is a brilliant scientist, but his skills in social leadership are sorely lacking. He admires philosophers like Machaivelli and believes in the adage of "rule by fear". After I recognized that, then I knew that I did not want to be part of that team any longer, but I stuck it out until after the Chicago conference because I was part of the program planning committee.
It is going to be up to the doctors to make the MP work for their patients by modifying it when necessary for individual patients. I'm confident that the doctors will be capable of doing so eventually, after they have a chance to become more familiar and have more experience with the MP program.
I only hope and pray that Trevor can learn to develop a better understanding of group dynamics and a better style of social leadership because he can be his own worst enemy at times. It hurt me deeply to watch so many Lymies and CFIDS patients falling through the cracks for lack of the right kind of advice and adequate support and encouragement at the MP website.
The good news is that the atmosphere at the MP website is starting to improve now -- albeit very s-l-o-w-l-y -- and the MP website is starting to offer a more welcoming atmosphere, thanks to so many successful fellow MPers who post encouraging notes to newbies nowadays. I'm glad to see that positive change in atmosphere and I applaude it.
Likewise, I am very happy to work privately with persons who have a sincere interest in pursuing the MP program or in considering whether to pursue it, but I find it much more productive to do so on an individual basis than in any of the open forums. It is more efficient for me time-wise and also I don't like spending a lot of time at the computer nowadays in order to participate in the various internet forums. EMs (e-mails) are much more convenient for me than PMs via either website though. My personal e-mail address is: [email protected]
[ 10. March 2006, 01:58 PM: Message edited by: TX Lyme Mom ]
Posted by bpeck (Member # 3235) on :
Bothrops: You're missing the point- It's not that the people on Lyme.net think their LLMDs are gods and there is no other therapy other than long term high dose abx - most people on Lyme net are the non-responders- in for the long haul without clear cut results from numerous therapies. on the contrary - protocols, antibiotics, and supplements are all discussed - pros and cons. ALot of ALT therapies are also discussed (just ask Brian about Rife - he's taken some critism and survived it)
The problem with the 'other' site we're talking about is that it CAN'T be talked about in an open fashion for fear of real-life law suits..(and there have been some) and the other complaints are that people (while on the list) were chastised and belittled for either asking questions or reporting less that stellar results, then banned if they didn't head the warnings.
I could re-post a few of the old nasty replies I got complete with expletives from that group - but I won't...
IMO, there are aspects of this protocol that probably have promise - and that WOULD benefit some people - but it's so mired with secrecy, power & blind loyality(yes cultish) that it's now impossible to separate the wheat from the chaff.
Barb
Posted by jarjar (Member # 8847) on :
I feel the MP is not for everyone as already has been stated but it does hold much promise for some. I work with 2 Dr's and one has about 200 patients on the MP and her practice is constantly expanding.
If the protocol wasn't working she wouldn't have to be adding to her staff to keep up with all the patients.
She became a believer in it when she overcame CFS from a mycoplasma infection with the MP.
I also should state that she doesn't encourage patients to go to the MP site for advice. Many of us are aware of the past history of the site.
For those of who can tolerate benicar it can be challenging to stay on it as it takes longer for Lyme patients to recover then the sarc patients.
I hope there will always be open discussions about the MP on the site as everyone seems to be going differnt paths to recovery and its good to hear what works for some. Jar
Posted by joycejcwat101 (Member # 6848) on :
I was asked in a private message to explain more about some of the changes made in the MP that have helped people on it (in particular, dealing with Herxing) and decided I would post the answer here, in case others are interested. It may be difficult to do effectively, since one needs to be familiar with the MP to really understand thoroughly, but I will do my best.
The biggest area in which changes have occurred over the last 1 to 2 years has to do with managing very strong Herxheimer reactions more effectively. The MP rarely has a problem eliciting Herx. This seems to be because the MP is more effective at killing bacteria even at low doses of antibiotics due to the immune modulation it uses (Benicar and lowering vitamin D, see http://members.aol.com/SynergyHN/transcript.html ).
And there are sometimes cases where the immune system seems to get ``turned on'' and it takes some time for it to ``turn off.'' This is sometimes called a perma herx or runaway Herx, where the immune system just keep killing bacteria, even if one stops the antibiotics. I don't know of anyone for which the Herx was really permanent, but it might occasionally take quite a while for it to stop the bacterial killing that is causing the Herx. I think the approach of going very slowly that I discuss (even starting at lower minocycline doses) is likely to help avoid this situation in most people.
The main newer options for managing Herx are at the sites listed below, but I will also summarize them very briefly. Mostly, they are ways of individualizing the protocol, since it appears that people's immune states and types of bacteria and bacterial load differ a lot, so that different things work for different people.
Of course, one needs to read the Phase One pdf, but the basic idea is that once adequate Benicar and vitamin D and light avoidance is established, one adds low doses of minocycline every other day, and then when Herxing at a particular dose has waned, the dose is increased (usually it goes from 25 to 50 to 75 to 100 mg minocycline over several months).
The newest alteration, I already mentioned, is using a lower dose of Benicar (others do better when they raise the Benicar dose).
One can also extend the cycle length (time between doses of antibiotics). For one antibiotic in Phase Two and Three, the cycle length used to be 8 days and now it is 10 days and people are encouraged to use longer cycle lengths if the Herx is still going at the end of 10 days.
There is now a modified Phase Two, which uses an antibiotic that stays in the body a shorter length of time. One usually takes it every 2 days, but now it is recognized that some people do better if it is taken every 3 or 4 days or even longer.
There are lower starting doses available for most of the antibiotics. And when a new antibiotic is added in Phase Two or Phase Three, it is now recommended to lower the other antibiotics (I think preferably to the lowest starting dose for each).
One Phase Two antibiotic can now be started at 1/16 of a tablet (or sometimes using an even lower level) vs higher previous starting levels. And others can be started at lower levels too.
Minocycline has well documented anti inflammatory effects and it has been found that for some people, taking the minocycline doses more frequently actually turns down the Herx reaction and bacterial killing. The reason pulsed doses are used usually in the MP is that they are more effective at killing bacteria and producing Herx. So, conversely, if Herxing too much, many people find that taking the more constant doses (e.g. 25 mg daily or every 12 hours) gives less Herx than 25 mg every other day. However, this approach does not work for all.
Now, some people who find they start Herxing strongly on Benicar or who are Herxing too strongly already due to a past treatment or just in general are started right off on the more frequent dosing of minocycline to get the advantage of the anti inflammatory effect and then they gradually work toward alternate day dosing, as tolerated.
I have mentioned before that I disagree with the current MP stance that one should never start at doses less than 25 mg for minocycline. I think for many people, especially long term or severe CFS or Lyme, this may work best (see http://members.aol.com/SynergyHN/MPjcw.html ). More data will be needed to verify this, but I know quite a few people who did well using this approach (though not all).
Quercitin is also found by some people to help relieve or reduce Herx symptoms and you can read about it at the link below (at the ABCs of the MP link).
A few people find that they are helped by raising the dose of antibiotic a little when their Herx is too strong or has changed its character.
Some people alternate between doses (e.g. 25 and 50 mg on alternate days) and find it easier, if they can't handle 50 mg each time. I personally feel in this case, they would do better using 3/8 or 37.5 mg of minocycline (as I did), but this is not part of the MP currently.
There are probably some other refinements I have missed. And I should emphasize that anyone who plans to try the MP, should thoroughly study the Required Reading first. I don't name Phase Two or Three antibiotics because we are asked not to in order to protect patients, since the Herxing can be so strong if they are used incorrectly. Doctors can obtain the information anytime and patients can do so, after completing Phase One. Here are some relevant links, where you can read about more on these options:
I won't go much into the discussion of the MP web site as discussed above. I would just say that the staff are all volunteers and don't have a lot of time to get into a lot of prolonged discussions with people-- it is hard enough for them to keep up with helping the people who want to do the MP and doing other necessary things. It is easier now for them to manage things with less frustration since so many past discussions and answers to questions have been put into FAQs, and they can refer people to them.
But anyway, I don't want people to take my word for it. If they are interested in the MP, they should spend as much time as they can doing the required reading and also reading the day-to-day posts and judge for themselves if this is something they want to try. And they can see what they think of the interactions among people at the MP board at http://marshallprotocol.com .
I don't defend everything that has ever occurred there, by any means. But I do think many patients can still benefit from the MP, as well as reading and posting on the MP web site. I think you can tell from the newsletters I write (http://members.aol.com/SynergyHN ) and my posts that I don't blindly accept everything, and I write about other approaches too. I realize that Dr. Marshall and the MP staff don't have all the answers to all questions about the Marshall Protocol or Lyme Disease, but no one does -- there is much yet to be learned.
Joyce Waterhouse, Ph.D.
[ 04. March 2006, 04:05 PM: Message edited by: joycejcwat101 ]
Posted by lanya (Member # 8740) on :
this is a very interesting discussion, thank you all for your insights. i started on the 40 mg benicar x6 hours a week ago, and immediately got horrible side effects -- weakness, headache, dizziness, numbness in arms. i lowered the dose to 20 mg x 6-8 hours and symptoms have improved a bit. i'm going to try lowering it again tomorrow to 10 mg x 6-8 hours, but may give it up at this rate. i'm avoiding vit D and major sun exposure but i'm not doing the cave thing, as this sounds crazy to me (and my doc, who warned me the MP site was looney and not to take it too seriously).
my question: have folks benefited from low dose minocycline w/o benicar? i have the mino in hand, but haven't yet added it. i'd feel safer using antibiotics w/o benicar, which has not been on the market long enough for me to feel comfortable using it.
i also had good results w/sublingual heparin. someone above mentioned it affects A receptors as well -- does anyone have more info on this, a pubmed citation perhaps?
thanks!
Posted by Jellybelly (Member # 7142) on :
Article "Heparin and Heparan Sulfate Block Angiotensin IIInduced Hypertrophy in Cultured Neonatal Rat Cardiomyocytes"
Lanya, I suggest you add sea salt and water to your protocol to increase your blood pressure. This may help with your symptoms. TX Lyme Mom might have some more tips for you as she knows the protocol inside and out.
Jar
Posted by TX Lyme Mom (Member # 3162) on :
quote:Originally posted by lanya: ...i'm avoiding vit D and major sun exposure but i'm not doing the cave thing, as this sounds crazy to me (and my doc, who warned me the MP site was looney and not to take it too seriously).
my question: have folks benefited from low dose minocycline w/o benicar? i have the mino in hand, but haven't yet added it. i'd feel safer using antibiotics w/o benicar, which has not been on the market long enough for me to feel comfortable using it.
Lanya, Yes, there is at least one RA patient who reported that s/he (don't recall now whether male or female) had not had any luck at all following the older Brown AP program, which uses only low-dose, pulsed antibiotics without Benicar, since Benicar wasn't on the market when Dr. Brown was still alive. However, when s/he started avoiding dietary D and excess sunlight, Voila!...the low-dose pulsed antibiotics started to kick in and yielded noticeable results. (Info on the Brown AP program can be found at two websites, links below):
Nevertheless, based on our daughter's experience and also upon the experience of many other MPers who do use Benicar, the addition of Benicar potentiates the effect of the antibiotics many-fold. Benicar also causes you to become much more sensitive to the effects of excess sunlight. We experimented with this effect just a little bit in our family too, in the very beginning, so I can say without any shadow of doubt that this effect is indeed very real.
After close observation, we have come to recognize that several members of our family have sun sensitivities, to greater or lesser degrees, even without the addition of Benicar. However, these effects are often delayed in time enough that unless you are well-informed about this effect and are observing for it very closely, you will probably miss seeing the connection.
This effect can be both subtle and can have up to a 24-hr. time delay so it's very easy to miss being able to recognize it unless you know to watch for the delayed effect several hours later or perhaps even not until the next day after the sun exposure. We did this little experiment before anyone in our family had started the MP while on a family holiday weekend at the lake over the July 4th weekend of 2004.
This was how we came to realize that more than one member of our immediate family, besides our daughter, was a potential candidate for the MP. Now two members of the family are on the MP, but not the third, who would never be willing or able to comply with the lifestyle restrictions.
Nevermind that though because this third person is much older and will probably outlive his problems, but if he attempted to do the MP, he'd have to retire first in order to be able to do it successfully because we know what it entails. He's much happier living with his problems for the rest of his life than he would be in tyring to treat them. That's why I say, as I've said many times before already, that the MP is definitely not for everyone.
Therefore, my personal advice to you (as an experienced MP caregiver) is not to disregard the light restrictions and lifestyle nor take them too lightly. That would be a huge mistake and could lead to some very, very serious Herx problems -- not the least of which would be severe cardiac problems if your heart happens to be one of the target organs involved in your disease.
Not everyone has cardiac stuff going on of course, but many Lymies do because Bb can hit the heart, so please don't take the lifestyle restrictions lightly. If you decide to do the MP, then do it strictly as recommended....or else, don't do it at all. I'd hate to see you or anyone else run into serious problems by flaunting the lifestyle while attempting to do the MP.
BTW, a full blockade with Benicar is important for doing the MP properly. I don't know of anyone who has been able to succeed with the MP without using at least 120-160 mg of Benicar daily, in 3-4 divided dosages of 40 mg. I'm not sure about the lower dosages which are being recommended, unless that is for the sake of a smoother,more gradual transition onto the full MP program.
It is my understanding that if someone is having great difficulty getting adjusted to Benicar, then this is probably a sign of a very high 1,25-D level at baseline. You didn't say if you had had your D-metabolites tested at baseline. It's a good idea to do this, if at all possible, because this can be a good predictor of who might run into the most trouble while adjusting to the MP program.
For example, the person in our family who did not have unusually high D-metabolite levels at baseline has been able to continue working a full schedule while doing the MP. He is also able to "get by" with less strict light avoidance measures, since it is impossible for him to avoid all light exposures at work.
It is taking him somewhat longer, though, to progress through the various phases of the program, and he is adjusting his antibiotic dosages accordingly. He is also using extra Benicar during the work week by increasing his Benicar dosage to every 4 hrs. on Mon.-Fri. because of his extra light exposures at work and then going back to the regular 6 hr. dosage schedule on the weekends at home.
Therefore, if you are experiencing as many symptoms as you have reported during the initial adjustment period to Benicar, I'm guessing that your 1,25-D level must be pretty high. The MP program might not be a good option for you at this time in your life unless you are able to comply with the lifestyle restrictions. YMMV though, since I don't really know enough about you to say for sure if this might be your situation or not. I'm just guessing, based on the info you've told us about yourself so far.
My main point though is either do the MP correctly or else don't do it at all. Don't make the mistake of trying to reinvent the wheel, because the MP can get you into a whole lot of trouble unless you take it seriously and unless you comprehend the necessity and importance of the lifestyle restrictions, no matter how inconvenient or questionable they may seem at first glance.
A lot of folks have already hopped down this same bunny trail ahead of you, and many of them got tangled up badly in the bramble bushes because of their foolish mistake of disregarding the importance of the MP lifestyle, including strict cave-dwelling for those who are the very sickest when they first start out on the program.
The good news is that one's light sensitivities do finally begin to diminish over time, so the necessity for cave-dwelling isn't a forever thing. Eventually, you can expect to be able to become a lot less strict with the light avoidance aspect of the MP -- but certainly not at first, during Phase One, nor the early months of Phase Two.
Maybe after about a year or two though, then you'll be able to get by with a somewhat less restrictive lifestyle.... unless you are one of the lucky ones whose disease process isn't too far advanced and whose D-levels at baseline aren't really too bad.
Posted by lanya (Member # 8740) on :
thanks for the info, jarjar and jellybelly. very useful!
thanks for the light warnings, txmom, i'll consider the possibility of a delayed reaction. my vit d levels are not extremely high (1,25=26 & 25D=14). it could also very well be that benicar simply has other side effects for me (as most drugs do -- and seemingly benicar is among the worst offenders for this, see www.iddb.org reports on it).
what i think is essential in any treatment is to pay respectiveful attention to what your body is telling you and listen to it rather than blindly following a protocol. what i find discouraging about the MP is how peoples' own observations about their conditions are often minimized, in favor of a theoretical model. let's face it, models work on paper but often not in reality. our situations can be quite varied and adjusting medical protocols with the help of a good doctor and our own body wisdom is the best way to go. for many of us, that will mean using some ideas from the MP without doing it to the letter.
Posted by dsiebenh (Member # 5353) on :
Ahhh, the MP controversy continues!
I'm not sure, but I think I am the longest-posting Lymie on the MP website. I began avoiding sun and Vitamin D in fall 2004, and began the full MP 11/04.
I'm now in Phase 3. It's been really rough, but I'm still hanging in there. The herx continues but I still have not missed a day of work due to illness or treatment.
I had the "perma-herx" issues right around the 11 month mark. Never before then. I switched to 20mg Benicar 3x daily, and 40mg at night. It's been a much easier ride since then. Marshall minimized the importance of the reduced Benicar dosage for some people, and there's never been a scientific explanation as to why this works. The important thing is that there are solutions for non-confrontational individuals who have issues and need to work through them.
The light avoidance really sucks, but I've managed to remain very compliant. Last summer was the worst. Try telling your 8 year old the next bike ride together will be when she's 9. My compliance is probably why I have stayed on the MP. Some of the others who have proudly proclaimed themselves MP failures earlier in this thread had obvious sun compliance issues when they were posting on mp.com.
I manage to commute 2-3 hours daily by car, and work in an office with windows, while on MP. I remain covered except for my face, and use the Ketaconazole cream. I am now at a point where I leave my blinds partially open at home, watch TV without sunglasses, and take off my sunglasses while conversing in the office. There appear to be no repercussions. I can now begin to come out of the closet, as it were!
I am still totally convinced by the science behind MP. There will be plenty of fine tuning and new scientific discoveries in the next decade. Those of you who are uncomfortable with uncertainty in your medical treatments should stay on the sidelines till then.
My mental faculties have improved. My IBS problems are significantly improved. I no longer fly into a Lyme Rage at the drop of a hat. I began lifting weights again last month.
My leg fatigue, coordination, and stamina have not improved, neither have my restless legs. These are the Big Kahuna for me. At the low point of my herx cycles, however, I can now stand comfortably for 20 minutes at a time, walk through a "big box" store, etc. This is progress.
And, I'm taking my first vacation in 2.5 years next week - 4 days in Florida for spring training baseball. I'll be on an abx break then, and I think I'll experience some slight improvement in my leg sx, while not herxing. Stay tuned.
After 18 months, I'm still a believer, and I'm still confident. I'm just really mentally tired, and often depressed. But that's not Marshall's fault, is it? It's Lyme's. Don't shoot the messenger.
Feel free to PM me.
Posted by diana (Member # 7466) on :
Thanks so much for posting your experience. I am one of those people that need to sit on the sidelines for now. I tried the mp last spring and only lasted 10 weeks. I was really struggling with how horrible I felt all the time. I couldn't tolerate the benicar and was one of those whose immune system stayed turned on the whole time. I was on a runaway herx for 10 weeks.
The light avoidance for me was very difficult. I felt myself becoming really depressed and it wasn't just because I needed to stay out of the sun-I believe it was due to a combination of light and D avoidance.
I may have stuck it out if the mp board was a little more open and receptive to questions but I was just newly diagnosed at the time and hadn't tried any other protocols. I also asked to be put in touch with other lyme patients that had been on the protocol for a longer period of time and was told these people preferred to remain annonymous.
Diana
Posted by joycejcwat101 (Member # 6848) on :
Diana, You can usually find people who will discuss a particular diagnosis, like Lyme, on the MP board. If you post a request that they contact you, some usually will. Or you can look for people with Lyme and then send them a private message. Many also do include their emails. You just click on their names. Their profile tells if they have an email address they are sharing and you can also look at their past posts. George in MO posts a lot about his Lyme experiences.
Perhaps the lower Benicar dose that some use now would have worked better for you. Also, for a Lyme patient's experience starting with very low doses, see http://members.aol.com/SynergyHN/MPjcw.html .
NOTE: to the person who sent me a PM recently -- it said your mailbox was full so I couldn't respond. You can email me at [email protected] or send me a new PM to let me know about your mailbox situation.
Joyce Waterhouse, Ph.D.
Posted by joycejcwat101 (Member # 6848) on :
Since much of this Update concerns the Marshall Protocol, I'm posting it here. The part near the end regarding acidity and Herx etc.. might be of interest to anyone who is Herxing.
Joyce Waterhouse, Ph.D.
Chronic Illness Support and Research Association (CISRA) CISRA's Synergy Health Newsletter www.members.aol.com/SynergyHN
CISRA Update # 4 --April 24, 2006: Upcoming Los Angeles Conference on Chronic Disease; Vitamin D Book Announcement; Marshall Protocol DVDs; Issue 10 Preview (``Herx'' reduction and acidity, hypoallergenic supplements) by J.C. Waterhouse, Ph.D.
(Disclaimer: This material is intended for information only and is not medical advice. Neither CISRA nor the editor receive funding from any organization, doctor, lab or manufacturer of any medication or associated products.)
Los Angeles Conference on Combating Cell Wall Deficient Bacteria in Chronic Diseases Including Cancer and AIDS (Los Angeles, California, June 17-18, 2006)
A conference for physicians, patients and policymakers is being sponsored by the Autoimmunity Research Foundation and is scheduled for June 17-18 in Los Angeles, California at the LAX Hilton. The conference is entitled "Recovering from Chronic Disease - Sarcoidosis, AIDS and Cancers." and will cover new research on cell wall deficient bacteria, vitamin D, theoretical and practical aspects of the Marshall Protocol and molecular genomics. The Marshall Protocol has been used to treat many chronic Th1 diseases, including autoimmune diseases, Chronic Fatigue Syndrome, Fibromyalgia and Lyme Disease (``Th1 diseases'' are so called because Interferon Gamma is thought to be dominant in inflamed tissues, even though blood levels may not be elevated).
The Keynote Speaker will be Alan Cantwell, Jr, M.D., who will discuss the role of cell wall deficient (L form) bacteria in AIDS and Cancer. His distinguished 40 year career has included research on cell wall deficient bacteria in many different diseases.
Trevor Marshall, PhD, will speak on several topics, including antibiotic resistance, molecular genomics in the pathogenesis of chronic Th1 disease, and the role of cell wall deficient (CWD) bacteria as a factor in AIDS. Greg Blaney, M.D. will discuss symptoms of Th1 diseases and their response to treatment. Since Vitamin D reduction is a key component of the Marshall Protocol, J.C. Waterhouse, Ph.D. will discuss new research on vitamin D to be published soon in a new book (see below), as well as more recent, unpublished research on vitamin D.
John McDonald, B.S., an expert on optical instruments will discuss practical microscopy in relation to detection of CWD bacteria. Meg Mangin, R.N. will discuss study design and Belinda Fenter, B.S., and a panel will discuss some practical issues relating to the Marshall Protocol. Case histories of patients on the Marshall Protocol will also be presented.
For more information on registration, speakers and conference details, see http://AutoimmunityResearch.org/lax2006.htm (registration fee is $95 before May 22 and $115 thereafter). If you consult the above link before April 30, double check it again about a week later to see if there are any updates. If you prefer, you may register by mail. You may send your name, address, phone and email address and a check to the Autoimmunity Research Foundation, 3423 Hill Canyon Ave, Thousand Oaks, CA 91360. **Note: Experience indicates that the Marshall Protocol (MP) must be studied and followed carefully in order to be effective and avoid possibly serious consequences from bacterial die-off reactions due to enhanced antibiotic effectiveness even at very low doses (for free assistance, go to http://Autoimmunityresearch.org , http://marshallprotocol.com or http://sarcinfo.com ).
DVDs Available
A set of DVDs from the 2005 Conference in Chicago may be obtained from the Autoimmunity Research Foundation ( http://AutoimmunityResearch.org or above address) for a $35 suggested donation (see web site for version for Health Professionals). For a suggested $15 donation , a DVD of Dr. Marshall's presentation for the FDA's ``Visiting Professor'' program may be obtained (Marshall TG: Molecular genomics offers new insight into the exact mechanism of action of common drugs - ARBs, Statins, and Corticosteroids. FDA CDER Visiting Professor presentation, FDA Biosciences Library, Accession QH447.M27 2006.)
Announcement: Revolutionary Vitamin D Information to be Published in a New Book (Projected Publication Date: May 31, 2006)
Dr. Trevor Marshall was invited by Nova Science Publishers to contribute a chapter covering his work on Vitamin D in chronic disease for the book, Vitamin D: New Research (see below). Dr. Marshall's new research on Vitamin D is challenging many of the commonly held beliefs about this so-called ``vitamin,'' which plays a crucial role in immune function. In some circumstances, Vitamin D may act more like a steroid immunosuppressant than a vitamin, allowing harmful cell wall deficient bacteria to increase. Dr. Marshall finds this can occur at levels many assume are safe. Reduction in Vitamin D is a key part of the Marshall Protocol (see Conference Announcement above).
However, it should be noted that there will be much additional information on Vitamin D that has never been published before that will be included in this new book chapter (some of the research from the book chapter and even some newer information will be presented at the Los Angeles conference, June 17-18, 2006, announced above).
The book chapter written on Dr. Marshall's Vitamin D research is entitled: ``High levels of active 1,25-dihydroxyvitamin D despite low levels of the 25-hydroxyvitamin D precursor - implications of dysregulated vitamin D for diagnosis and treatment of chronic disease,'' by Waterhouse JC, Marshall TG, Fenter B, Mangin M, Blaney G, In Vitamin D: New Research, New York: Nova Science Publishers; in press.
(Note: No royalties or other proceeds from the sale of this book are being paid to the contributing authors of this book chapter.)
The projected publication date for this book is May 31, 2006 and there is a pre publication discount of 40% for those who order it in time (orders may be done quickly by emailing the publisher at: [email protected] ). The publisher can also be reached at: Nova Science Publishers, Inc, 400 Oser Ave., Suite 1600, Hauppauge NY 11788-3619, Phone: (631)231-7269, Fax: (631)231-8175.
To help achieve a wide availability of this book through interlibrary loan, some people are contacting medical libraries to suggest they order it. Some people have also purchased the book to donate to a medical library in their state. A list of medical libraries can be accessed online at: http://www.lib.uiowa.edu/hardin/hslibs.html .
Preview of Issue 10 of CISRA's Synergy Health Newsletter:
Excess Acidity and Bacterial Die off Symptoms
Some patients have reported increased acidity in response to bacterial die off reactions (Jarisch-Herxheimer Reactions or ``Herx'') using antibacterial protocols like the Marshall Protocol. Several patients have reported ( http://marshallprotocol.com/forum11/5733.html ) that when their symptoms reached their worst, their urinary pH was more acidic (e.g., less than 5.8) when they measured it with pH tape purchased from a health food store. They reported that small amounts of baking soda (sodium bicarbonate -- 1/4 to 1/2 teaspoon) both normalized their urine pH to the 6.0 to 7.0 range and partially relieved some of the symptoms associated with bacterial die off.
Other options to reduce excessive acidity (or alkalinize) include Milk of Magnesia and certain other types of magnesium (like magnesium citrate). Milk of Magnesia can be a laxative, so if one wants to avoid that effect, other antacids can be used, like baking soda or Tums (calcium carbonate). Those on the Marshall Protocol should avoid alkalinizing substances that contain potassium (e.g., certain ``green'' drinks or Alka Selzer Gold), since the Benicar used in the Marshall Protocol can increase potassium retention, which can occasionally lead to elevated levels. Calcium and magnesium should not be taken within 2 hours of taking certain antibiotics, like minocycline.
One should not use baking soda without a doctor's permission if one is on a sodium restrictive diet for conditions such as high blood pressure. One should also avoid alkalinizing too much, since some people seem to become more prone to urinary tract infections or overgrowth of Candida in the colon if they alkalinize too much by taking too much antacid.
One should still be cautious about keeping the rate of bacterial die off at a moderate level, but for at least some people, reduction of excess acidity may be a helpful tool to use now and then to reduce bacterial die off symptoms. Some of the symptoms reduced in some anecdotal reports include shortness of breath, lightheadedness, abnormal cardiac sensations, weakness, pain and emotional symptoms like anger or irritability. Alkalinizing substances have also sometimes been used to help relieve symptoms of allergy/sensitivity reactions. (The above information provides preliminary observations only.)
In an article in Issue 9 of CISRA's Synergy Health Newsletter, a list of hypoallergenic supplements that are free of Vitamin D was provided for those who's dietary restrictions do not allow adequate nutrient levels. Since publication, it appears that the KAL Magnesium Glycinate that was listed may be more allergenic for some people than originally thought due to the use of cellulose derived from birch trees. People may differ in their reactons and so one can use symptoms or a test like the pulse test to help determine which supplement is least allergenic in a particular case (note: sensitivity levels may increase over time with consumption of a food or supplement). See the article from Issue 5 for an overview of allergies/sensitivities and the pulse test ( http://members.aol.com/SynergyHN/allergy22a.html ).
Two alternative magnesium supplements that appear to be less allergenic are: Solgar Chelated Magnesium and Tyler Magnesium Glycinate Plus
Editor's Note: I have recently become affiliated with the Autoimmunity Research Foundation (ARF). I am doing some reviewing of the literature and writing on subjects related to the role of cell wall deficient bacterial forms, vitamin D dysregulation and the antibiotic approach being used to treat a variety of autoimmune and inflammatory diseases (aka the Marshall Protocol). I am doing this on a voluntary basis because of the benefit I have received from being on the Marshall Protocol and there is no financial connection involved. Opinions I express in CISRA's Synergy Health Newsletter are still my own, and not that of the ARF or Dr. Marshall, unless indicated otherwise. I will also continue my independent inquiries, research and writing for CISRA on a variety of topics that I believe may benefit patients with chronic disease.
Posted by joycejcwat101 (Member # 6848) on :
I just wanted to mention an update regarding the Los Angeles Conference (June 17-18) on the Marshall Protocol and the role of Cell Wall Deficient Bacteria in a variey of Diseases:
A New Speaker: Professor Yoshinobu Eishi, MD, DMSc, PhD, of the Tokyo Medical and Dental University, arguably the pre-eminent Sarcoidosis researcher in Japan, is now to speak at the conference. He will deliver a presentation describing his own 26 years of research into the bacterial pathogenesis of Sarcoidosis.
Many of us view Lyme Disease and many other autoimmune diseases, like sarcoidosis, as very similar in nature, involving a mixture of species of bacteria (with one species facilitating the acquisition of additional species). In fact, some Chinese studies found Lyme spirochetes in most sarcoidosis patients.
Also, I thought I would mention that the deadline for receiving the lower registration fee for the conference is coming up soon, on Monday, May 22. However, people can register after that date (but the fee for the 2 day conference goes up $20).
![[woohoo]](graemlins/woohoo.gif)