posted
Yes the Mp is the only thing that has really helped me. I strongly suggest you try it. Sorry I don't post here often or I would have responded sooner. Feel free to PM me for any tips.
Posts: 805 | From Utopia | Registered: Feb 2006
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
In general it has been disappointment for these who tried it.
Improvement has been really rare.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
the mp is a very good program with sound science behind it..it is not nice nor appropriate to tell people that it did not work for alot of people..this is for areneli...it can work if it is done in the proper way and you know why it works so you can have faith in what you are doing..the fact that we have trevor marshal is a god send so dont hurt other people who need to be helped.. eric
Posts: 593 | From long island ny | Registered: Apr 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I haven't tried MP myself. But on another board a number of people are using it for Rheum. Arthritis and sing its praises. I understand it is a tough regimen.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
For your sake, please do your research on this protocol. And research it on sites other than Marshall's site. Several people that I know personally have been "censored" from the site for reporting anything perceived as negative. You will not get an accurate picture of its "efficacy" from the site. For those who tried it without success - their voices are long gone.
Also, the site claims that "research" has been conducted, or is being conducted on the protocol with great results, but the truth is that there has been no professional research study done on the protocol at all.
My own experience with the protocol was the following: For the first couple of weeks, I had great relief from the head and neck pain that has been a huge part of my Lyme disease. Minocin was a great antibiotic for me, as it has been for others. I did not herx. any worse on Minocin with the Benicar than any other herx without it.. After the first couple of weeks on the Benicar, I did not have continued reduction in pain or symptoms. And gradually, I got worse and worse and had to get on IV antibiotics. I have friends who had the same experience as mine, but without any pain relief the first couple of weeks.
There is now TONS OF RESEARCH, real research, out now on the benefits of Vit. D, and the harm of deficiency. I spoke with a very well respected endrocrinologist who read Marshall's work, and said that Marshall got his theories on Vit. D "backwards". Also, remember, "Dr." Marshall is NOT an MD.
Others I'm sure, will have opinions on what I have reported here. I have not lied in anything I've said. I feel we all have a duty to report on our experiences with all these untested protocols because we can be at their mercy.
I have not had symptom relief with anything other than antibiotics and some minerals, Though the antibiotics have not been a "cure" by ANY means, they have greatly improved the quality of my life - not without many ups and downs! Thus far, I have been unable to get off of the abx. without serious relapse. I'm hoping going after the co-infections I have more aggressively will lead to some sort of remission.
Best wishes!!
Posts: 364 | From California | Registered: Sep 2005
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posted
I tried the MP for a year. I made progress at first, then hit a plateau and seemed to lose ground. And I followed the protocol to the letter: no Vit D (which is not easy), stayed out of the sun and wore ridiculous sun glasses, Benicar every 8 hours, etc etc. I think a real weakness in the protocol is that it does not address co-infections (believes that if you address lyme, your body will take care of the rest), and the avoidance of Vit D. There is just far too much research on the benefits of D to outweigh Marshall's theory.
And the MP forum is loopy. I was told not to post anymore if I didn't have informed questions. So I didn't.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
I do think the pulsed minocycline approach is a good idea .
There are docs using this but who are modifying the MP , and are probably not advocating VIT D deficiency , as does Dr Marshall , who has the persona of a dictator .
Jarjar says his doc is having even better benefits with adding glyconutrients to the minocycline ( like ambrotose ) . I am using them and they do pack a punch . You have to use them sparingly .
Like others here, I have serious reservations about depleting the immune system of VIT D . There is too much info that indicates a healthy immune system NEEDS VIT D .
I am glad that some people are having some success with it . Unfortunately , those who have a horrible experience are treated as pariahs for questioning any of Marshall's approach .
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I have work experience in the medical field and understand most common lab results,though I am not an M. D..
I also have strong opinions about the MP for most Lymies. It may be very valuable for sarcoid patients, and some Lymies can have sarcoidosis and not know it. Most of us don't have it, however.
When I posted my labs on the MP Board, I was LIED to by the nurse, who told me several of my labs were very abnormal and indicated a need for the MP. They tell everyone they need the MP, regardless of results that don't fit their theory. If you disagree, you are promptly banned and all your posts are deleted.
She said my hemoglobin and hematocrit were too low and that I was anemic. I was not even close to being anemic.
She said my triglycerides were too high indicating inflammation, and they were right in the middle of normal range, etc. BTW, Marshall is the only one who thinks high triglycerides indicate inflammation.....there are no medical papers on this theory at all. I looked.
Actually, my labs were all well within normal range, and even my I25D/25D ratio was perfect at 1.08.
I left and never went back. You should also know that TM was convicted of medical fraud in a European country. I think it was Denmark but am not sure. I would not trust him as far as I can throw him, and I think he should be prosecuted for practicing medicine without a license.
Vitamin D restriction is very important for sarcoidosis, but there is no proof it helps Lyme, and plenty of proof that deficiency causes cancers and other horrors.
I think the people who are being helped either have sarcoidosis too, and/or are benefitting from the ABX,though I can't prove that, and unlike Marshall, I admit I can't prove it.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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My experience with the MP was not a good one. The use of massive doses of benicar has not been sufficiently studied to enable one to use such a medication with assurance. I myself developed intestinal bleeding twice withing a few weeks of each other while on the MP. I herxed horrendously. It appears that for people with late stage lyme disease the protocol can put you in a cardiac intensive care ward. While it may help some people one should understand the risks involved are very great. I would advise against it.
As for Trevor Marshall and his minions, they seem to have fallen into that ego power trip mentality that is riddling everything and everybody who has anything to do with Lyme disease or any other illness for that matter. Why these doctors etc somehow think they are gods is beyond me. We need to get these MDs off their pedistals. They are brass idols with feet of clay, a special kind of clay mixed with a lot of fresh bull manure. Cheers
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I read about the protocol for fibromyalgia (which I thought I had for 10 years & found out it was actually Lyme). It seemed very extreme. Come on... wearing dark glasses in front of the computer & avoiding going out in the daylight. Sounds like becoming a vampire to me. The placebo effect is very powerful & some people can think it is effective when it is actually the placebo effect. It sounded way too extreme for me. Maybe some of these doctors should try their remedies themselves. It's sad to make people who are ill go through so much torture along with their illness & make money off of it, besides. If it helps some of you out there, that's great but I'm not into the sado-masochistic aspect of it. I'll stick with the antibiotics for now.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I have improved a lot on the MP and you can read about it and my experiences as well as a Q & A from a talk I gave before a Lyme Support Group in 2005 in Issue 9 at http://members.aol.com/SynergyHN . It has also been important for me to minimize my food sensitivities on the MP and I think this was important in enabling me to do well on the MP. It was also important for me to go extra slow.
Now, for most people, it doesn't require all that extreme light avoidance due to being able to use zinc oxide sunscreens and keto cream. It is true, most find NoIR sunglasses make life more comfortable for them.
The information on vitamin D is new to most doctors, although the vitamin D hypersensitivity/dysregulation is commonly recognized in sarcoidosis. But there is other work that supports Dr. Marshall's view (see pdf below). There is even the beginning of a trend in cancer research showing that some assumptions about vitamin D being beneficial for cancer are likely premature. I cite a prostate cancer study that linked high 25D to higher prostate cancer rates (http://autoimmunityresearch.org/transcripts/waterhouse_lax2006.pdf ). And a new paper on pancreatic cancer showed a similar type of link: see : Cancer Res. 2006 Oct 15;66(20):10213-9. Comment in: Cancer Res. 2006 Oct 15;66(20):9802-3. A prospective nested case-control study of vitamin D status and pancreatic cancer risk in male smokers. Stolzenberg-Solomon RZ et al: They state: ``Higher vitamin D concentrations were associated with a 3-fold increased risk for pancreatic cancer.''
Below is an excerpt from an article I wrote for the Townsend Letter for Doctors and Patients giving some case histories I wrote after detailed exchanges with the patients involved (www.townsendletter - part two of the article will come out in May in the print edition and the April issue has part one). There is also some data that Dr. Marshall presented at a molecular medicine conference in Sweden at the Karolinska Institute.
By the way, the Marshall Protocol site is run by volunteers and all help is given for free. Dr. Marshall donates his time doing his work, full time for the foundation (see www.AutoimmunityResearch.org ).
I would also suggest that it is not helpful to spread unfounded and untrue rumours regarding Dr. Marshall's background. We have discussed before various complaints people have about the web sites and Dr. Marshall and I don't think it is productive to get into them again (see this link if you want to revisit that: http://flash.lymenet.org/ubb/Forum1/HTML/032528.html ). In any case, I don't intend to go back to that subject anymore. And here is another thread I recall: http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=037918;p=1 where we discuss various issues.
I know that some people have problems with Benicar, and in fact, I'm trying to figure out why this occurs and what can be done to get around it so more people will find it easier to do the MP. Many others feel better almost immediately after beginning Benicar and others are in between.
Joyce Waterhouse
Excerpt from Pre-Publication Manuscript of Article for May, 2007 issue of the Townsend Letter for Doctors & Patients (www.townsendletter.com)
Data
Preliminary results for chronic Lyme disease patients show that of the 51 patients who have been followed on the protocol study site for 6 - 22 months, 29 are reporting tangible improvement (3, 12).
Marshall (4) also finds significant improvement rates in various other chronic diseases (Table 1). These results probably underestimate the ultimate efficacy of the treatment because many patients were still in fairly early stages of treatment and were still undergoing strong immunopathology responses to bacterial killing (a.k.a. Jarisch Herxheimer Reactions, see 1, 3).
Table 1: Number of Patients / Numbers Reporting Improvement
Patient 1 is a 14-year-old boy who has been ill with chronic Lyme Disease (with Rickettsial and Chlamydial coinfections) since June 2004. He suffered from chronic severe headaches, debilitating fatigue, a tourette-like tic occurring every few seconds, blurred/double vision, photophobia, nausea, vertigo, insomnia and visual tracking problems that prevented him from reading or writing. After 16 months on the MP, all of his symptoms have greatly improved, and his tic and visual problems have completely disappeared. He is now able to resume most of his previous activities and continues to improve on the protocol.
Patient 2 is a 58-year-old woman who was diagnosed with Lyme disease in 1999. She had been treated with oral doxycycline in 1999 and 2001. She relapsed after having begun extra vitamin D supplements and increasing sun exposure. Many symptoms have greatly improved in the 29 months since she began the MP, including muscle pain, stiffness and weakness, fatigue, headaches, panic attacks, colitis attacks, nausea, bloating, indigestion and insomnia. She reports that on the MP, her low back pain has gone from a level 8 to a level 1 on a 10-point scale (attributed to bulging discs at L4 and L5 on MRI), despite decreasing her use of pain medication.
Patient 3 is a 55-year-old female who was diagnosed with rheumatoid arthritis 10 years ago. She had previously been on high dose antibiotics (mostly oral, with some IV and IM) for 6 years prior to the MP and had minimal improvement. Her condition worsened while taking vitamin D prior to the MP (800 to 2400 IU daily over a 2 year period). After 29 months on the MP, she reports reduced pain medication use, significantly greater strength and less pain in her hands and upper body and less fatigue. Recently, her ANA (anti nuclear antibody) tested negative, after having all 17 prior tests showing elevated levels (usually 1:640 or more).
Patient 4 is a 42-year-old man diagnosed with chronic fatigue syndrome and fibromyalgia. His illness began after he became ill with infectious mononucleosis at the age of 22. Prior to beginning the MP, he could only work 2 or 3 days per week and had adverse consequences for days following exercise. He began the MP in March of 2005, and since then he has had 90-100% resolution of his headaches, light sensitivity, tinnitus, sinus congestion, sore throat, unrefreshing sleep, swelling of fingers and feet, fibromyalgia and heart palpitations. He has had 70-75% resolution of brain fog, fatigue and lymph node swelling. He still requires injections of IgG due to a deficiency of IgG3, but the injection interval has increased from an average of 14 days to more than 24 days since commencing the MP. After 22 months on the protocol, he reports feeling markedly better than anytime in the last 20 years and is able to work full time and perform strenuous physical activity.
Patient 5 is a 43-year-old man who had psoriasis since the age of 7, chronic insomnia beginning at the age of 26 and sarcoidosis, diagnosed at the age of 36. His wife had been diagnosed with sarcoidosis several years before. This is in accord with the familial tendency that has been observed among Th1 diseases due to spread of the bacteria among family members. Prior to the MP, numerous treatments had failed to help his psoriasis (e.g., PUVA, steroids, fish liver oil). In contrast, while on the MP, the psoriasis went from 70% coverage of his skin to 1%. The insomnia resolved completely soon after the Benicar was begun. The patient had also suffered from chronic kidney stones, which ceased when he began the protocol. Treatment with the MP has resulted in more than 95% resolution of his symptoms of sarcoidosis (coughing, fatigue, sinusitis, memory problems, muscle aches etc...), and his chest x-ray is now normal as he continues his fourth year of the MP.
Patient 6 is a 48-year-old woman who was diagnosed with sarcoidosis in 1991. In 1998, she developed seasonal affective disorder (SAD) and began taking anti-depressants every winter to treat the depression. After beginning the MP in October of 2006, she found she was not depressed and did not need her anti-depressant. The combination of 40 mg Benicar every 6 hours and avoiding vitamin D was sufficient to relieve her SAD (she wears a zinc oxide containing sunscreen to help minimize vitamin D production and NoIR sunglasses). She has only been on the MP for a few months, but finds her fatigue has significantly lessened.
Patient 7 is a 61-year-old woman with presumed sarcoidosis (based on CT scan), with unilateral tibial neuropathy presenting with altered sensation, severe foot atrophy and calf muscle cramps. So far on the MP, she has regained 95% of her muscle tone, strength and mobility in her foot and leg. Her fatigue, depression and cutaneous lesions also resolved. Two other examples of severe neurosarcoidosis showing marked improvement on the MP are described elsewhere (3).
Patient 8 is a 67 year-old man who has had sarcoidosis of multiple organs, including the heart and lungs, for over 20 years. He had a pacemaker implanted in 1995 and has undergone two quadruple bypasses. He had been in atrial fibrillation over 90% of the time in the two years prior to the MP. After 3 months of treatment with the MP, with no other changes in medication, his atrial fibrillation disappeared and has not returned in the following 20 months. His chest x-rays have improved significantly and his shortness of breath and fatigue have also improved as he continues on the MP.
Patient 9 is a 51-year-old woman who has been diagnosed with numerous conditions over many years of being ill. Since beginning the Marshall Protocol, her symptoms of Lyme disease (muscle/joint pain, fatigue, cognitive problems) and her Sjogren's syndrome and Raynaud's symptoms have significantly improved. Her myasthenia gravis, diabetes insipidus, gastroesophageal reflux disease, Barrett's esophagus, interstitial cystitis, allergies, multiple chemical sensitivity, and migraines have greatly improved and her chronic yeast infections (vaginal and esophageal) have completely resolved. She can now read, use the computer, drive a car and walk without a cane, things she could not do before the MP.
References (For links to Dr. Marshall's papers and presentations: marshallprotocol.com/forum2/2274.html) (1) Waterhouse JC, The Marshall Protocol for Lyme disease and other chronic inflammatory conditions. Part One: Overview and implementation. The Townsend Letter for Doctors and Patients 2007; April. (2) Marshall TG, Marshall FE, Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. Autoimmun Rev 2004; 3(4):295-300. (3) for study site with links to many published studies, progress reports and additional MP information, see: www.marshallprotocol.com; for Phases One guidelines, see http://AutoimmunityResearch.org/phase1.pdf; for selected patient reports see http://autoimmunityresearch.org/transcripts/recovery_lax2006.pdf, http://www.marshallprotocol.com/forum30/7473.html and Conference DVDs available from www.AutoimmunityResearch.org.
Copyright JC Waterhouse, PhD
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
Someone sent me a private message and I can't respond due to their mailbox being full. But perhaps others are interested in the answer, so I will post it here.
If someone wants to find a doctor who will help them with the MP, they can ask for a list via a link at the site at: http://marshallprotocol.com .
If the above link doesn't work, try again a few seconds later -- sometimes there is a temporary glitch.
It also may be a good idea to find MP members near you and send them a private message (you can click on a state and you will get a list of members in your state). But it is always very important for the patient to become very well versed in the protocol and participate in the MP site and get advice there etc..., since very few doctors have studied the MP all that thoroughly.
posted
Remember, as Dr. Brown once said, "we are dealing with a bacterial allergy" to an infectious organism. This is why low dose, long term Minocin, zith etc..work and IV's/injections only suppress symptoms. It only is a matter of time before a relapse occurs.
Many people are walking around with these bugs but as we age or suffer trauma (physical or otherwise) they take over and the immune system suffers.
Don't think in terms of just Borrelia.
Posts: 770 | From USA | Registered: Jul 2006
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I have lowered my Vit. D intake and wear the NoIR glasses and have lowered my sun and light exposure for the last 6 months.
These actions have definitely helped with the neuro-lyme symptoms.
As I can't do the Marshall Protocol at this time, I am doing the Buhner herbs, starting with taking on babesia, which is going OK so far.
I believe that the Marshall Protocol does miss these co-infections, for sure, but then, it was originally for sacoidois, not Lyme.
I'm very glad Lymenet is here for these open discussions of our personal experiences.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
All of Lonestarticks co-infections were cleared up and documented by Igenex testing. The MP allows your own immunes system to go in and clear up the coinfections.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
I just wanted to let you know that there are a number of new resources with information on the Marshall Protocol and related subjects.
These two links include many useful links within them, include a detailed description of the MP (published as a two-part article in the Townsend Letter for Doctors and Patients)and the shorter article that appeared in the Lyme Times.
This next site has many interesting articles and interviews with researchers and patients and in the coming week will have an extensive article on Vitamin D written for the laymen.
posted
I thought I should add that I have found that there are certain dietary factors that may affect one's ability to do well on the Marshall Protocol, especially in people with a lot of food/medication sensitivities and/or gastrointestinal problems (e.g., diarrhea, irritable bowel syndrome, inflammatory bowel disease, dysbiosis with organisms like Klebsiella).
I found this out for myself when I started to broaden my diet some when my food sensitivities started to decline after 2 years on the Marshall Protocol. After a while, certain foods and beverages caused bigger reactions and began to affect my ability to tolerate Benicar. It turned out to be due to cross reactions that were occurring. After quite a bit of research, I found that all it took was a change in my diet and I tolerate the Benicar and the MP better than ever. My food sensitivities are now at by far the lowest level they have been in the last 20 years.
If interested, the article about all this is at http://members.aol.com/SynergyHN/CGA10-3a This information may also interest people who tend to crave carbohydrates and people who feel their blood pressure is too low to tolerate the Benicar.
Joyce Waterhouse, PhD
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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posted
My wife tried the MP and she was very very strict about following the protocol. Lots of misery for nothing for her... might have actually hurt her.
Several of her friends in support group tried it too... no help.
Posts: 70 | From AZ | Registered: Sep 2007
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posted
As I mentioned above in my previous post, I think some people have a difficult time due to certain food and medication sensitivities, some due to trying to progress too quickly (even though they may be strictly following the guidelines), and others do not follow it correctly (sometimes the doctors do not study it enough).
Also, I think some would do better in the approach I used starting at even lower doses (see http://members.aol.com/SynergyHN/transcript ). There is also a doctor in British Columbia who consults with doctors on difficult cases. The MP is very difficult for people who have been sick a long time, IMO, because it is so powerful in its ability to kill the intracellular bacteria that may have accumulated to high levels.
Some might even find they do better on a lower dose of Benicar (though for most, the full dose is best)
Anyway, I don't know what applies to your wife or her friends, I just wanted to respond why I think some people don't seem to make it on the MP.
There are some people who did the Roadback protocol for some of these diseases (www.roadback.org) and progressed part way and then switched to the MP and are making very good progress in getting rid of the rest of the pathogens. It may be some people might do a protocol like that, which does not cause as much immune activation to work down the bacterial load and then later do the MP to finish off the rest.
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