posted
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
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
Thanks, Joyce! This is a really concise summary. It's great to hear of progress from another MPer. Good luck!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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bpeck
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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
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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riversinger
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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.
posted
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 .
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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bpeck
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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
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
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.
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bpeck
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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
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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riversinger
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posted
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.
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
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.
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
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.
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posted
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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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bpeck
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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.
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
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.
Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
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
Posts: 79 | From Chicago, IL | Registered: Sep 2003
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posted
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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
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
posted
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?
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
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
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
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
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....
Posts: 512 | From Memlo Park, Ca USA | Registered: Sep 2002
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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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
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.
Posts: 1251 | From california | Registered: Apr 2005
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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posted
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.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
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.
Posts: 61 | From Florida, USA | Registered: Aug 2005
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
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?
Posts: 1251 | From california | Registered: Apr 2005
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posted
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.
Posts: 61 | From Florida, USA | Registered: Aug 2005
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posted
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.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
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
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
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.
Posts: 1251 | From california | Registered: Apr 2005
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posted
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.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
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.
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
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.
Posts: 4563 | From TX | Registered: Sep 2002
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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
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
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.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
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)
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
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?
Posts: 1251 | From california | Registered: Apr 2005
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