posted
I'm doing way better on the MP. I don't post often about it on this board due to all the negativity of the protocol on this board.
I agree its not for every single person. Just like all treatments there can be bad bad side effects for a few.
There are many people who say I tried the MP for 3 months or 6 months and it didn't work for me. Same goes for some lyme docs saying it doesn't work. You never know how long the patient tried it or how hard they tried to avoid sun and work the protocol.
It took me a year to start seeing major improvement because I was ill for so long.
Thanks for starting this post. It didn't surprise me at all when it was listed as one of the top 5 treatments for Lyme in Brian's new book.
So once again its not for everyone but there are many who are getting very good results with it and I'm glad to be on of them.
Posts: 805 | From Utopia | Registered: Feb 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I'm glad you're one of them, too. But many and few are subjective words. It's more like, a few get better, even much better, and many don't. Meanwhile, Amy's post, her blog, do not list risks.
It really is unethical not to list *ALL* risks, and unethical and unwise and dangerously myopic to assume side effects even dangerous ones are herxes. This is done with the salt/c protocol too. People are harmed by this wholesale promotion as cure. A protocol that might benefit a few or some, and markedly benefit some, should nonetheless include upfront all risks and the acknowledgement that the 'science' is theoretical.
In contrast, when Rich V. proposed a 'methylation protocol' that was a shortened version of Dr Yasko's, and people had some adverse even dangerous effects (including one person ending up in the ER), he spent a week revising the protocol to include the risks and insist people work with their doctors. *THAT* is ethical.
Posts: 2276 | From united states | Registered: Jun 2004
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amyproal
Unregistered
posted
Oxygenbabe,
Please stop describing the science behind the MP as theoretical. Unless, you want to watch all the following videos and read all the following papers and discuss how you find the molecular modeling data to be "theoretical"
Marshall T: We have a lot to learn about 'diseases of the aging'. Correspondence to Giunta S: Is inflammaging an auto[innate]immunity subclinical syndrome? Immun Ageing. 2006 Dec 16;3(1):12. Available from URL http://www.immunityageing.com/content/3/1/12/comments
Marshall TG: VDR Nuclear Receptor Competence is the Key to Recovery from Chronic Inflammatory and Autoimmune Disease. Abstract presentation, Days of Molecular Medicine, Karolinska Institutet, Stockholm, May 2006. Copy available from URL http://autoimmunityresearch.org/karolinska-handout.pdf
Marshall TG: Molecular genomics offers new insight into the exact mechanism of action of common drugs - ARBs, Statins, and Corticosteroids. FDA CDER Visiting Professor presentation, FDA Biosciences Library, Accession QH447.M27 2006 Online Video available from URL http://autoimmunityresearch.org/fda-visiting-professor-7mar06.ram
Marshall TG, Lee RE, Marshall FE: Common angiotensin receptor blockers may directly modulate the immune system via VDR, PPAR and CCR2b. Theor Biol Med Model. 2006 Jan 10;3(1):1. Available from URL http://www.tbiomed.com/content/3/1/1
Waterhouse JC, Marshall TG, Fenter B, Mangin M, Blaney G: High levels of active 1,25-dihydroxyvitamin D despite low levels of the 25-hydroxyvitamin D precursor - Implications of dysregulated vitamin D for disgnosis and treatment of Chronic Disease. In Vitamin D: New Research. Volume 1. Edited by: Stoltz VD. New York: Nova Science Publishers; 2006. ISBN: 1-60021-000-7 Info from Publishers website
Marshall TG, Marshall FE: Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. 4th International Conference on Autoimmunity, Budapest, Nov 2004 Marshall TG: Bacterial Th1 Processes Seem Key to Chronic Lyme Remission. ILADS Conference, Oct 2004, Rye Town, NY Marshall TG, Mangin M, Marshall FE: Bacterial Th1 Processes Key to CFS/ME Remission. AACFS Conference, Madison, WI, Oct 2004 Marshall TG, Fenter BJ, Marshall FE: Antibacterial Therapy Induces Remission in Sarcoidosis (in English). JOIMR 2005;3(1):2 Available from URL http://www.joimr.org/phorum/read.php?f=2&i=107&t=107
Marshall TG, Fenter B, Marshall FE: Antibacterial Therapy Induces Remission in Sarcoidosis. Herald MKDTS 2004g; Volume III: Release 1. (The Journal of the Interregional Clinical-Diagnostic Center, Kazan, Invited paper, Special issue on Sarcoidosis. Published in Russian translation). ISSN: 1726-6149 Available from URL http://www.icdc.ru/home.nsf/ae6ba61f2370d2c3c3256f4800499282/7c4adb204d59034bc3256f660035e4ce?OpenDocument
Marshall TG, Marshall FE: Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. Autoimmunity Reviews,2004; 3(4):295-3001. Available from URL http://dx.doi.org/10.1016/j.autrev.2003.10.001 PMID: 15246025 or access FullText at author website
La th�rapie antibact�rienne induit une r�mission de la sarco�ode. R�seau Internationnal de Soutien des Malades de la Sarco�dose. Available from URL http://tinyurl.com/6al6g, Last Accessed April 2, 2005.
Marshall TG, Marshall FE: Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. Autoimmunity Reviews,2004; Suppl 2:55 (Abstracts of 4th International Congress
You say these nothing about vitamin D and cancer on my website? Section 7 of my paper on Vitamin D is completely dedicated to vitamin D and cancer. Did you actually read the paper?
The MP site does carefully address risks associated with the protocol and how to dose antibiotics correctly in order to prevent them. Did you actually read through all the forums before making your staments?
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Ummmm...you're citing a ton of articles by Marshall.
I don't know if it's kosher to quote another board, but here is part of Penny's post on her yahoo group back in 2007:
"Paula,
When I was trying to do the MP, the minocycline just about killed me and all I got was "herx, herx, herx"...and..."cut down on the mino, increase the Benicar". I was already on 160mg of benicar a day, and down to almost no mino, and it didn't help at all. It was a terrible reaction. Terrible headaches, vomiting, photosensitivity. That was an extremely scary experience and it was completely ignored by the "experts" at the MP board. I had no choice but to stop the mino and when I recovered enough to research it a bit I found out that pseudotumor cerebri (aka ICH) is a clearly listed side effect of mino and is much more common than people know. To promote that as "herx" is irresponsible and dangerous in my view.
When I stopped the mino out of necessity and switched abx at my doc's bidding, I became a bad guy rogue for not doing the protocol "correctly". When I expressed concern about others who were having severe reactions (one person died, remember?), all my posts were removed ..."
I've left out more inflammatory parts of the post.
Are you sure the risks are stated correctly?
This isn't worth discussing further. The risks and failures have been stated by others on this thread, as well as a few successes, more power to them.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
OK, I am ready to jump into the fire now with a few educated guesses. I am only making assumptions here, but I bet:
- The folks that ``tried'' the MP and ``suffered'' through some ``dangerous'' events had very high pathogenic loads; - Not managing the patients' physical, emotional and intellectual expectations led to their drop out; - Not many (or none) of these folks who tried the MP and dropped it ever recovered completely with any other remedy. Does any one know if ANY of them completely healed and moved on?
These are just my thoughts and observations by interviewing a handful of people during the last few years...
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
It saddens me that I feel discouraged from sharing my experiences with the protocol that changed my life here. Thanks to the MP, I am enjoying health that I had actually lost the ability to imagine when I was at my worst. Thanks to the MP, I no longer take any pain meds, sleep meds, etc., and I can finally take my health for granted.
My favorite thing about the MP has been how affordable it is. The medications are more affordable than anything else I've ever done, especially since I have had to pay out of pocket for all of my treatments. I have never had to pay to participate at the MP website or to speak to Trevor & staff either.
I also like the fact that the MP is the only protocol I have ever been on where I do NOT show signs of relapsing when I stop. That is something I have never experienced before with any other treatment. It really has given me my life back.
Whether or not it looks good on paper and whether or not Marshall wrote the papers Amy cited doesn't matter to me, because I'm happy with my results. Furthermore, I know of two doctors who each have over 200 chronically ill patients succeeding with the MP and who rely on it in their practices.
That said... I always encourage those with recent or newly diagnosed Lyme infections to try the ILADS approach and to work closely with their doctors first.
Those who become chronic, continue to relapse, and for whom nothing else seems to work... please look at those patients who have recovered. You might learn from patients who were labeled treatment failures until they finally found the answers that were right for them.
The options that worked for them might work for you... but, if the MP doesn't sound like the right answer for you, don't do it. There are other options out there, but I wonder how often discussion of other options is discouraged here as well. (I don't know, because I'm no longer searching for answers.)
Lymenet is pretty good at helping new patients get diagnosed and find ILADS doctors. However, our ILADS doctors are under attack and not everyone will have access to them. I know of several ILADS doctors who have had to close their practices or were forced "by the powers that be" to take early retirement.
Even some of those who find ILADS doctors may not be helped by the ILADS approach. With that in mind, please remember that most recovered patients are NOT going to stick around in an overwhelmingly negative environment where they are made to feel unwelcome. Those who find health cease to need the forums.
Once they leave, the forums are filled with new patients looking for answers and lifers who have not achieved recovery; they can provide a lot of assistance to newbies, but they obviously don't have all the answers yet or they would be well. If they always discourage others from sharing, they may keep you from finding your own right answers.
Discouragement prevents others from being able to - or wanting to - share the options that have worked for them. That does not create an environment that is conducive to healing. For an environment conducive to healing, you might occasionally encourage those who have found answers to share the things that have worked for them - even when it's not something that interests you personally.
I don't blame Amy and others for not feeling comfortable enough to want to come back and share here. I am uncomfortable with the negative tone at Lymenet also. Sadly, I can't even remember the last time I felt comfortable or even welcome here.
------------------------------------ DX: Lyme (neuro-Borreliosis), Babesia, Bartonella, Mycoplasma, HHV-6, EBV, and Candida. All infections confirmed with lab testing. Diagnoses varied from CFS to FMS, Lupus and MS. Began treatment in 1998 with ABX. Followed by Roadback protocol. By 2000 disability forced me to move back home with parents. Began IV ABX 2000-2002 (17 months). Experienced initial successful transition to orals for treatment of Lyme & co-infections, health continued to go down hill with severe relapse.
By 2004, I was labeled a "treatment failure" until I found answers in the form of the MP. After initial difficulties adjusting to the MP followed by slow but steady progress, I am finally enjoying great health. I was light sensitive at first - normal now, including sun & light exposure (complete with tan lines).
* My opinions are my own and I am NOT affiliated with Trevor Marshall or the MP websites.*Posts: 487 | From USA | Registered: Feb 2002
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oxygenbabe
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posted
Why is it that adverse events must be ignored, cautions and questions be discarded, and it all cloaked under 1) folks who had high pathogen loads and dropped out from herxheimers (exactly the opposite of what Penny pointed out) or 2) negativity that means it shouldn't be discussed?
Why can't there be a protocol that works for an unknown number, perhaps a minority, perhaps a bit more, but so far not for the majority, and has made some sicker? Why are trips to the ER, psuedotumor cerebri and other effects being completely sidestepped by those who are getting well with the MP?
None of the good questions have been answered. The only answer is, "I'm not coming back here to post because it's too negative" or "This works, go look at the science etc"
Whatever.
Again, for lonestartick and amy getting well that's great. That does not translate into no risk, little risk, lack of side effects, or universal cure for lyme or anything approaching that.
Also, cave is right (with his unobstrcuted view of cave 75 he has acquired a lot of wisdom). If someone came on and said, I'm excited. This worked for me. There is a theory as to how it works though that hasn't been proven yet. It might work for you, who knows, check it out...There are risks associated with it and you definitely should work with your doctor.
That would be just fine.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
The "MP" includes the use of Benicar - a very well known, widely used ARB. By any possible standard whatsoever it is a safe medication, (often used for hypertension.) It is still extraordinarily safe even at high dose, in fact for some quite pleasant at that dose. The antibiotics used are standard ones, used commonly for a wide variety of infections, including Lyme (and used by ILADS Dr's.) The length of the treatment is long - anyone on this site will find long term use of abx unremarkable (in fact, working hard to allow Dr's to prescribe long term abx for Lyme is the main focus of many in the Lyme community.) So, can we please keep these facts in mind when we see the (often repeated) comments of some of the persistent posters here about the various risks of the protocol. Enough already! If the risk they are really talking about is that you may "herx", well that certainly is a risk, well disclosed on the MP website, but it also happens to be an essential component of any therapy that actually fights Lyme - as opposed to simply suppressing the symptoms. Sort of analogous to saying that a risk of surgery is that you might have to have stitches. If it bothers some on this site that Marshall has come up with and researched various hypotheses as to why the protocol works, well then just ignore that part of his effort. You can be an agnostic and still use the protocol. Marshall is clearly intellectually curious about what causes chronic illness. Good for him. So are some of us who have seen first hand the failures of the medical profession to understand chronic Lyme. I wish my Dr. was as curious.
Posts: 12 | From Weston CT | Registered: Jan 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
What Oxy said- said perfectly-!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Nice comments by all. It's nice to see that this topic has evolved in a constructive fashion.
I'll repeat my question from the previous topic, as it is still relevant yet unanswered:
...Not many (or none) of these folks who tried the MP and dropped it ever recovered completely with any other remedy. Does any one know if ANY of them completely healed and moved on?
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
Cave said, ``Oh, and perhaps the subject line gets people off on the wrong foot. The word "cure" is a bit strong and one-sided for this disease.''
That is what has always rubbed me the wrong way. I have always found that statement to be dismissive of people struggling with chronic illness and their difficulties getting diagnosed and finding treatment. No matter how well intentioned, it's premature for anyone to make those statements. It trivializes the experiences of so many here. (I hope that it will prove to be the case, but the jury won't be in on that for years (decades) to come.)
I also liked the way Oxygen so eloquently stated, ``If someone came on and said, I'm excited. This worked for me. There is a theory as to how it works though that hasn't been proven yet. It might work for you, who knows, check it out...There are risks associated with it and you definitely should work with your doctor.
That would be just fine.''
I hope that is how I have stated things, but if I haven't always done so, I will try to use your suggestions as a guideline.
Cold Feet said, ``...Not many (or none) of these folks who tried the MP and dropped it ever recovered completely with any other remedy. Does any one know if ANY of them completely healed and moved on?''
That's something I have wondered about. Does anyone know?
Well said by all. Posts: 487 | From USA | Registered: Feb 2002
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oxygenbabe
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posted
Lonestar, first of all, I'm really glad for you. I remember your Mom coming on here frequently, in fact, she was trying so hard, researching so much, so emphatic, and perhaps so much in warrior mode, I sometimes wondered if she was real and I believe I once questioned it and was backchanneled by Lou that indeed she was. I found it rare that a Mom would devote herself so exclusively and emphatically and indefatigably, with her burning torch raised, for her child, no matter what. And nothing was really working. I remember her posts about your cat or dog (can't remember which) helping you through the most horrible herxes on IV etc. And nothing was really working and you'd been harmed by this so young.
So to see you pull out with this protocol, with the help of your family, probably particularly your Mom, is really nice to hear. Congratulations to your Mom for being the rare person who not only cares, but who researched and would not give up, and you too for not giving up. Together you made it. And I see now you are married!
And your posts are mostly on this thread modest and letting us know how good you feel. The only problem I have is with saying the thread is negative. Honestly, some people have done so poorly on this protocol, some dangerously so, that it probably works really well for a subset of folks and how large that subset is I don't know but I suspect something like 15-20% of partial responders to other antibiotic protocols, and nobody yet knows why. There is a theory about VDR, Vitamin D, cell wall deficient bacteria, from Marshall but the problem is partly Marshall himself, as evidenced in some of the posts on this thread, and then, the fact is, it's only a theory.
I don't know about those who tried the Marshall protocol and moved on. I do know barksplinter's wife failed it miserably but is improving steadily on microdose rocephin. That's the only person I know of. I don't personally know anybody who tried the protocol, only through internet postings. Maybe some who failed that and antibiotics have something else, such as a virus or microfilarial worms or pathogenic fungi or some pathogen not yet understood.
[ 03. October 2007, 05:00 PM: Message edited by: oxygenbabe ]
Posts: 2276 | From united states | Registered: Jun 2004
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posted
The MP is helping me. As someone else mentioned, at its heart the MP is essentially the same as most lyme treatments advocated on this board: take abx long term and deal with the herxing.
It could be the MP works best for those who have very abnormal vitamin D levels, and not so well for others (I'm just speculating). Part of what convinced me to try the MP was that prior to learning of it, via my own exploration I had discovered vitamin D supplements influenced my symptoms. That led to a vit D blood test which returned numbers that were WAY off the norm. Like many lymies, years worth of tests for everything else imaginable kept turning out normal, normal, normal. Finally, with the vit D test I had found something abnormal on which to base a treatment!
What I dislike about the MP: 1) the light exposure restrictions, 2) their "sanitized" message board (though I can understand why they delete some messages). What I like about the MP: 1) I proceed at a pace that I choose by what I can tolerate, 2) I'm taking small doses of abx, which IMO, compared to high doses, have a smaller risk of side effects, and 3) after 10 years of debilitating illness, it's the first thing that's helping me. After about a year on abx, I've not yet experienced complete wellness/remission but the signs are very encouraging.
Posts: 727 | From USA | Registered: Mar 2006
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CaliforniaLyme
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Member # 7136
posted
Yay*)!*)! Glad to hear it!!! This may very well be a great protocol for people who have problems dealing with Herxes!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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amyproal
Unregistered
posted
Hi California Lyme,
You definitely do have to deal with herx when on the MP. But as dbs says you can manage the herx by lowering your antibiotics as needed. However when people are very sick sometimes the herx is very strong at the start and cannot be so easily controlled. This doesn't happen in all cases, but when it does, the patient may have to deal with a little extra suffering while knowing that in time the symptoms will settle down. Also, it's a good feeling to know that the rise in symptoms is a result of your body finally recognizing and killing the bacteria that are making you sick.
I thought some of you guys might be interested in the Phase 1 Marshall Protocol guidelines. For those of you like Oxygenbabe who are concerned that the MP does not provide sufficient warnings you will see that there are indeed many warnings in the guidelines. They also give a good idea of what to expect in terms of herxheimer symptoms and how to manage them if they get too strong.
My gosh, your first paragraph is so beautifully descriptive and very touching. (If you aren't a writer, you should be.)
I've been extremely fortunate to have my mom's support. That she believed in me alone is a miracle. There were times when the rest of my family wanted nothing to do with me and they psychologized my illness, but my mom never gave up.
In the days before the internet, she spent countless hours at the medical library because she was never content merely to read the abstracts if she could locate the full article. I have been so very fortunate to have her and I credit her efforts for my success. I don't know that I could have done it without her. Even though there were times I felt very much alone, I had someone who believed and was searching for answers. Most patients don't have that and I don't know how they do it. They are the ones whose journeys and successes are the most inspiring.
Yes, I had a very cool cat that was diagnosed with Bartonella. As a result, he totally understood the health challenges. Like my mom, he never failed to be supportive. Since I married a fellow patient, we have the ultimate support network. We're both doing well, but we definitely put the fun back in dysfunctional during the first few years of marriage.
I went back and read some of the earlier threads on this topic. The negativity didn't get out of hand here, but I did sense some. Of course, I may be more sensitive to it now because of how heated and negative previous MP topics used to get - especially in the very early days where they turned into brawls. There were times when I really felt ganged up on and anything but supported or welcome to share. I see from the comments of others that I'm not the only one who has felt that way.
Part of the sense of negativity may result from how difficult it can be to interpret tone and context in posts, especially when you don't know the person on the other end. That's why it's so important to try to maintain an environment that permits people to share success while also permitting open discussion about the pros and cons of any protocol. There are cons with this one and it's difficult. For me others I know) it proved worth it because it worked wonders. For that I feel extremely fortunate and I think it has value. I also understand that it's not universally appealing or the right choice for everyone.
I do think Cold Feet's comments address what may be happening to some treatment failures. I've shared his observations, but I'm still curious about why it works for some and not others. I think it may be revealing that those who see the two most experienced MP doctors and have their support fair better than so many who have to rely only on the website. That's a topic that isn't encouraged at the MP website, at least not while I was there.
I didn't have time to follow up yesterday and I'm up past my bedtime tonight, so I'll pray this comes across OK in tone. (Sometimes my meaning gets lost when I'm sleepy.)
Posts: 487 | From USA | Registered: Feb 2002
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It's past my bedtime and I probably shouldn't be trying to express any thoughts, but yikes, I don't recall actually feeling comforted by early Herxing and adjustment to the protocol. For me, it wasn't until my symptoms began to fall away that I felt like it was working. Even so, I was afraid to believe they wouldn't come back for the longest time.
Honestly, it wasn't until I contracted and came down with a really bad flu that hit everyone in our wedding party that I was really encouraged. Even though we were on our honeymoon, the fact that I ran my first high fever and threw it off in two days was what finally convinced me the MP was working. It had been a decade or more since I had been able to run a temperature when I suddenly reached 102. I couldn't believe it, so I kept sending my husband out to buy "another thermometer". I was sure we had come across a bad batch.
By the two year mark I was almost asymptomatic and now I'm really enjoying good health that I can take for granted, even when I'm exposed to kids who carry chronic strep. Those were all milestones for me, but the early Herxing - that only made me doubt the process more, especially since in some respects it was more tolerable than earlier Herxing on IVs and LLMD treatment.
All those changes left me wondering whether or not it was working and whether or not it would be real. So far, so good - great actually, but it took me a long time to decide that. Even though my experiences fit the model and followed the predictions, there were times when I really doubted. I'm thrilled now, but that wasn't always the case.
Take care and happy healing.
Posts: 487 | From USA | Registered: Feb 2002
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posted
I have never posted or even registered before but felt I just had to in this topic.
Quoting Lonestartick below"
" but I'm still curious about why it works for some and not others. I think it may be revealing that those who see the two most experienced MP doctors and have their support fair better than so many who have to rely only on the website. "
You have hit the nail on the head for me anyway. The solid support and ability of my MP doctor, who is probably one of these, has been the sole reason I have persevered and am now reaping the benefits. I was not able to do many of the more restrictive parts of the MP as I had to continue work but still have been able to make steady progress and I'm confident I am going to continue to get even more healthy. I am getting my life and enthusiasm back. That's why I am...
Thankful.
Posts: 1 | From Canada | Registered: Oct 2007
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amyproal
Unregistered
posted
Thankful - I'm so glad you are improving!
Lonestar tick - I also met my boyfriend because of my illness. He was a year ahead of me on the MP when I started. I called him for guidance and we became good friends and well one thing led to another. He is also great support. He is doing so well right now. He just started an amazing full time job and is actually taking really long bike rides again (he used to be an excellent cyclist before he got sick).
Anyway, about being happy about herxing. I think it's a good way to approach the MP if possible. In my opinion when you start taking Benicar and the MP antibiotics and all of a sudden your symptoms start to flare, what other explanation can there be besides the fact that you are killing bacteria? The antibiotics are supposed to cause exactly that reaction because when they kill the bacteria, they relase toxins and cytokines (proteins that cause pain, inflammation and fatigue). A healthy person would take antibiotics and nothing would happen to them because they have no bacteria to kill. But if you are sick and you get the herx response, you think "hey! this must be because I'm killing bacteria wohooo! It's the idea of pain for gain.
I know that some of you think that feeling bad could be from the medications themselves but for the most part alergies to antibiotics are extremely rare and Benicar is a very safe drug with few side effects. So for the vast majority of people, feeling bad is a sign that they are moving towards recovery.
Take a look at the interviews with MP patients on my site. They all went through periods of just feeling herx before they got better. It's a natural part of the process.
I think one of the best ways to succeed on the MP is to contact other patients on the treatment and ask them for guidance. Read as many other people's progress reports as you can and see how they progress and manage symptoms. Also, read all the information on the board. There are many discussion topics that explain concepts that make it so much easier to understand how to do the treatment correctly.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Lonestar & Amy, nice posts.
You two have succeeded, and the successes tend to congregate. I've noticed that with other protocols. Those who have a hard time, who have to stop, who have side effects, can't tolerate, or who don't get better because other problems are the key, may slink away in shame, be banned, be told they didn't try long enough or hard enough etc. I am not saying this in a negative way, simply that it's hard to be objective. What if someone's main problem is, for instance, babesia? Low dose mino won't do much for that. I've read multiple interesting posts on people saying they really never turned a corner to wellness until they treated their babesia.
I have a hunch that's my main problem, but I haven't dared treat it as I find the protocols draconian even to contemplate. However, in my case, I got bit on the Connecticut shore in an area epidemic for babesia (where babesia is as prevalant or more so than lyme). I got the bullseye 12 days later, I treated immediately with doxyxycline which should have taken care of an early uncomplicated case of lyme, and yet I got sicker and sicker. And when I say got, I mean practically overnight. I sensed I had babesia too but couldn't get anyone to test me for a few years (positive). I had never been that sick in my life and it seemed a bug unlike any I could convey or relate to. It was completely bizarre, whatever infection was in my body, and I went from day to night. Sudden onset after tickbite. So, there are many complications.
Today I was on Amazon to buy a book someone mentioned about bioweapons, The Extremely Unfortunate Incident at Skull Valley. Amazon paired it with Bryan Rosner's Lyme disease self published book so I took a look at the reviews out of curiosity. Most were positive (and if he didn't include the salt/c protocol I'd probably be much more enthused) but one negative one had this to say about the Marshall Protocol (last May, 2007)--this reviewer identifies him or herself as a Georgia lyme patient and advocate with two lyme literate MD's:
"The next comment was about the claim that the Marshall protocol is somehow a wonderful treatment. Both thought that it was potentially very dangerous to induce a Vitamin D deficiency is a person. Very few credible Lyme docs still promote the Marshall protocol. In fact, Dr. Klinghardt (recognized expert) from the West Coast used to promote it and now says that his results have been very disappointing. Both my docs said that they would avoid it, and that the people who did manage to improve on it probably did so because of the use of low dose antibiotics."
We have to give some serious credence to the negative as well as the positive, without bias, which is so VERY hard in fact impossible without double blind studies. That's why those were invented. And even then there can be bias.
Questions I have that haven't been answered: There are more pathogens than just CWD deficient bacteria. In fact, for all we know, we ALL carry them and they are part of life. If you look at the work of Joshua Lederberg and Lynn Margulis you may indeed conclude this, since our precious mitochondria were once parasitic invaders and in a sense are the ultimate CWD. So, I have questions about the whole concept and whether it is a bit narrow. In addition, what if your main problem is fungi? I know people really sick from fungal infection and mold intolerance, and antibiotics only made them worse, not because of herxes, but because of fungal overgrowth, systemically. And what of those who turned the corner finally with babesia treatment? What of those who on valcyte the antiviral were able to get out of bed and back to work and life and exercise after years of being bedridden (Montoya)? What of those who failed the protocol and let's not assume they all simply couldn't tolerate herxes. Really try to figure out why. Maybe I will give my old hyperbaric doc a call as she is Stanford/Harvard educated, brilliant, and did the protocol and failed it miserably. I can ask for her insights and post.
Also--for herxes--I agree Amy as to why genuine herxes occur but they occur with all antibiotic treatment for lymies, and some lymies still stay chronic, so I sort of agree with Lonestar, its when symptoms fall away or your immune system gets a good acute short flu that you can feel more confident.
Posts: 2276 | From united states | Registered: Jun 2004
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Amy:
I remember your name- and you may or may not remember mine.
I, like Penny, and Lonestartick, were on the 'electronic' scene when the MP was in it's early days before it was formed and while it was being formed.
This was in the Sarcinfo days- the website Marshall had before he started his protocol.
All I can tell you is that I'm happy you're feeling well. There are alot of alternative therapies that have 'topped off' someone's therapy and pushed them in wellness.
That being said - The people who have been members on this board for many years remember the censorship, control, conversation twisting, and other un scientific tactics used against people who critized the protocol. Penny was sued for speaking her mind.
So - for the INFORMED people on this list - we won't be running up any banners touting the protocol you're pushing.
As Penny said.. there's alot of MIS-information out there and it's up to everyone to protect themselves by researching information relating to any protocol..
When ill, you can set yourself back a year or more by choosing the WRONG therapy.
So, I for one, am not excited about revisiting an unpleasant experience.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Amy: One more post from me on this topic..
In my informed opinion about this protocol:
It's wrong to lead people who are uninformed to think this protocol will "CURE" Lyme.
There have been many physicians and researchers that have come and gone looking into this protocol and if it was the "CURE all" it claims to be it wouldn't have remained as obscure as it is- and the 'discussion' site is STILL censored against any UN sucessfull stories or any posts that question the protocol too intently..
Barb
AMY PROAL WROTE in part: I think one of the best ways to succeed on the MP is to contact other patients on the treatment and ask them for guidance. Read as many other people's progress reports as you can and see how they progress and manage symptoms. Also, read all the information on the board. There are many discussion topics that explain concepts that make it so much easier to understand how to do the treatment correctly.
Best,
Amy
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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amyproal
Unregistered
posted
I'm glad this was brought up. I know there was an incident several years ago where a few people including Penny were banned from the MP site and apparently Penny was sued. Obviously I've heard that Dr. Marshall had very legitimate reasons for his actions but I don't even want to get into this situation because it's not relevant anymore. I started the treatment right after that situation and in my time on the treatment I've seen only one other person get banned. And she basically told the moderators to @$#* off several times. They gave her many chances to comply and she didn't.
So one person. You guys make it sound like every other person who starts the treatment runs the risk of getting banned or censored and that is just not true. Take, in contrast, the people like myself who think that the MP board is a very supportive and helpful community. Those people's voices are not being heard here.
You guys are worried about the safety of the MP, but don't you realize that's exactly why Dr. Marshall and the board moderators are so careful about what is posted on the board. The treatment must be done exactly as directed, or yes, problems can arise. If someone gets on the site and tries to tell people to do the treatment in a different way than than dictated their comments will get taken down. It's very important to the board that people do the treatment correctly and safely and some of these opinions are not based on valid science.
What's going on is that the people who were banned have all congregated in this forum. That is why this discussion is so ridiculously negative and why the view expressed about the treatment are so angry. There's a ton of personal grudges influencing these comments.
None of this has anything to do with new people who need to hear about the science behind the treatment and not the drama that took place several years ago. It's time to move on.
"There's a ton of personal grudges influencing these comments.
None of this has anything to do with new people who need to hear about the science behind the treatment and not the drama that took place several years ago. It's time to move on."
Amy, I know you're probably scared to read of any negative consequences resulting from the MP, since you're currently in the midst of trying the protocol.
But to completely negate other's legitimate experiences -- that in some cases nearly cost them their lives -- by saying that these are just 'personal grudges' is quite insulting, however unintentional.
And just because they took place several years ago doesn't make them any less relevant. I'm sure you wouldn't suggest that people just forget the Holocaust for similar reasons.
I personally know 3 people from our small support group who had to stop the MP due to severe kidney and/or hypotensive issues. One woman nearly lost her kidney function. And she was following the protocol to the "T". It took nearly 8 months to recover her kidney function.
I'm sure you feel you're doing the right thing and have obviously put a lot of work into your site. I would humbly suggest however, that you include more cautions and actually report some of these negative concerns and/or risks on your page, to protect yourself by telling the full story. Reading these 'negative' stories on this board may actually be a good thing, in the long run.
Perhaps you could ask others at the MP group if anyone has stopped taking the MP drugs. If they have, and they're still doing fantastic, then perhaps the word "cure" is appropriate for them.
But since you use the word "cure" in this thread, let me ask you directly -- can you name one person that has been cured by the MP protocol (i.e. off all drugs and still doing great)?
Best,
Kelli
Posts: 12 | From Washington State | Registered: Oct 2007
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amyproal
Unregistered
posted
Kelly,
From the perspective of the MP, those patients you mention are not seen as treatment failures. We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them.
If you have a high bacterial load and start Benicar all of a sudden the immune system can recognize all the pathogens present. Sometimes the herx is very strong at first. If a lady experienced kidney faliure that is a sign that her kidneys are severely infected with L-form bacteria. She can use special combinations of antibiotics and a modified phase 1 to slow the herx and prevent the kidney function from droping at such a fast rate.
Those people you speak of were unfortunately unable to realize that the treatment was working for them. Instead of quitting they should have sought out ways to better manage the herx.
Please read the following from the phase 1 guidelines about herx. This is supposed to happen!
"Anyone about to embark on the Marshall Protocol must understand that Herx reactions are unavoidable and will make them feel worse before they feel better. Patients should demonstrate a continued determination to recover their health, regardless of a little extra (temporary) suffering.
A Herx reaction may be an increase in current Th1 inflammation symptoms, a return of previous symptoms or emergence of subclinical symptoms. Usually these symptoms are merely unpleasant, but they can be temporarily debilitating or serious. The following is only a partial list of possible Herx symptoms: fatigue, muscle weakness, rash, headache, photosensitivity, pain anywhere, numbness, nausea, diarrhea, constipation, ringing in the ears, toothache, sinus congestion, nasal stuffiness, fever/chills, flu-like body ache, cough, irritability, depression, sleep disturbances and `brain-fog'.
Herx reactions are unique to each patient and their tissue involvement. When starting Benicar and Minocycline, it is not unusual to develop new, sometimes alarming, Herx symptoms. For example, patients may experience sharp muscle or organ pains, wheezing, shortness of breath, and cardiac rhythm disturbances even in the absence of previous identification of problems in these areas. Although rarely life-threatening, the Herx reaction needs to be treated with respect. Carefully following the guidelines for Benicar and Minocycline should avert any serious problems.
Managing the Severe Herx Reaction To some extent, the degree of systemic involvement suggested by D-metabolites levels, other inflammatory blood markers, imaging, severity of symptoms and length of illness will hint at the possibility of serious Herx reactions. But every patient should be alert to their possibility and understand how to manage them. Patients who have had a cardiac workup have the advantage of knowing of the possibility of heart disease can be prepared with a full spectrum of Herx management techniques and/or guided emergency instructions.
Patients with cardio-respiratory, liver, renal involvement or other serious health problems should be monitored very closely by their health care provider in order to properly manage Herx symptoms and hormonal rebalancing, until the Th1 inflammation has been resolved.
Intolerable Herx reactions can surprise a health care provider (or patient) who was previously unaware of Th1 inflammatory involvement. By provoking the Herx reaction, Benicar and Minocycline are performing a therapeutic probe, providing information about unsuspected systemic inflammation.
Intolerable Herx reactions may be difficult to predict because uncontrolled factors (e.g. an increase in body temperature) can cause a sudden improvement in tissue penetration with a resulting high bacterial kill and endotoxin release. Herx reactions can occur at any time and with each increase in a dose."
I would like to say that it's not this bad for everyone. The severity of your herx is directly related to how high your bacterial load is. There are many people who are able to work and do other activities while herxing. It varies widely from person to person. The herx can also be controlled by adjusting the dose of antibiotics.
posted
The MP medications are chosen for their effectiveness against pleomorphic, intra-cellular bacteria. Bacterial die-off always elicits an inflammatory cytokine release from the cells they have parasitized. The result is a temporary exacerbation of disease symptoms, a phenomenon called the Jarisch- Herxheimer reaction (Herx). Minocycline elicits the maximum Herx response as its tissue concentration decays away to zero. Herx reactions typically begin 1-24 hrs after the Minocycline dose and usually dissipate 12-24 hrs before the next antibiotic dose. Many patients find the reaction is strongest on the second day.
Anyone about to embark on the Marshall Protocol must understand that Herx reactions are unavoidable and will make them feel worse before they feel better. Patients should demonstrate a continued determination to recover their health, regardless of a little extra (temporary) suffering.
A Herx reaction may be an increase in current Th1 inflammation symptoms, a return of previous symptoms or emergence of subclinical symptoms. Usually these symptoms are merely unpleasant, but they can be temporarily debilitating or serious. The following is only a partial list of possible Herx symptoms: fatigue, muscle weakness, rash, headache, photosensitivity, pain anywhere, numbness, nausea, diarrhea, constipation, ringing in the ears, toothache, sinus congestion, nasal stuffiness, fever/chills, flu-like body ache, cough, irritability, depression, sleep disturbances and `brain-fog'.
Herx reactions are unique to each patient and their tissue involvement. When starting Benicar and Minocycline, it is not unusual to develop new, sometimes alarming, Herx symptoms. For example, patients may experience sharp muscle or organ pains, wheezing, shortness of breath, and cardiac rhythm disturbances even in the absence of previous identification of problems in these areas. Although rarely life-threatening, the Herx reaction needs to be treated with respect. Carefully following the guidelines for Benicar and Minocycline should avert any serious problems.
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Amy:
You see Amy- right out of the shoot you are parroting the same ole song we've heard for 5 years - baciscally since the inception of this protocol- And I was there while the song was being written.
Those of us who have tried various therapies- and relay our experiences and fears OPENLY here do NOT, I repeat DO NOT push or tout any particular protocol - on the contrary - information is freely given- pro and con- and people can choose what's best for themselves...
WHen you talk about 'patients' and totally misunderstand what the herxheimer reaction really is- gives away the fact you are a mouth piece for things you don't understand. You're doing yourself a big diservice doing anything other than sharing your experiences and observations.
Using the WEAK argument that it's a 'grudge' when people disagree- instead of researching the truth - shows you have no idea what you're talking about.
And IMO, history is ALWAYS relevant.
Barb
AMY P WROTE in PART Kelly,
From the perspective of the MP, those patients you mention are not seen as treatment failures. We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them.
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
Thanks for your reply Amy. I'm disappointed however that you cannot see or understand yet how patronizing your statements are. I'm sure you don't mean them to be.
You said...
"From the perspective of the MP, those patients you mention are not seen as treatment failures."
Tell that to their kidney specialists who had to demand that they stop treatment for fear their patients kidneys would completely shut down and fail. As in 'stop working'. Kidney failure is one step away from DEATH -- it has nothing to do with a so-call "herx".
"We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them."
First of all, the fact that you use the word "we" says Barb is correct -- you're just parroting the dogma from the MP Club. And secondly, these weren't an "extreme increase in symptoms" -- their kidneys were fine before treatment.
Amy -- it is truly in YOUR best interest that you consider -- just consider -- reading about the potential risks involved with the MP on other sites (perhaps by doing a google search?). Even Dr. Paul Cheney has expressed reservations about the MP, and to the best of my knowledge, no other leading CFS/Lyme doctor has endorsed it. Correct me if I'm wrong.
You won't find the real horror stories on the MP site. They were "lost" during a revamp of the site about 2-3 years ago, and like others have said, if one asks too many questions, or especially questions the protocol itself, Marshall rudely cuts them off and/or they are banned. So much for free speech.
Secondly, try to put yourself in these patient's positions. The ones I've read about and/or heard about directly, tried and tried and tried to stay on the protocol, telling their doctors and specialists what you have repeated here...that it's just a herx due to a high bacterial load...etc..
But they got worse and worse, and as I described earlier, came close to losing their life because they came so close to kidney failure. If that isn't "treatment failure", then with all due respect, I don't know what is.
And finally, I ask the question again: Has ANYONE gone off the drugs -- anyone, even Marshall or Rennie or whoever is left there -- so that they can say they were CURED by the MP?
Sincerely,
Kelli
p.s. Please note that the references you posted earlier...to my knowledge most of them were talks or presentations. Please correct me if I'm wrong, but it's my understanding that Marshall has tried to get published in prestigious medical journals, only to be turned down. A "PubMed" search will turn up nothing of his that has been accepted in any major journal. But I could be wrong on that and would appreciate a correction if I am... Posts: 12 | From Washington State | Registered: Oct 2007
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posted
Thanks for your reply Amy. I'm disappointed however that you cannot see or understand yet how patronizing your statements are. I'm sure you don't mean them to be.
You said...
"From the perspective of the MP, those patients you mention are not seen as treatment failures."
Tell that to their kidney specialists who had to demand that they stop treatment for fear their patients kidneys would completely shut down and fail. As in 'stop working'. Kidney failure is one step away from DEATH -- it has nothing to do with a so-call "herx".
"We see the extreme increase in symptoms that they experienced when starting the treatment as an indication that they are killing a substantial level of L-form bacteria and consequently as a direct sign that the treatment WILL work for them."
First of all, the fact that you use the word "we" says Barb is correct -- you're just parroting the dogma from the MP Club. And secondly, these weren't an "extreme increase in symptoms" -- their kidneys were fine before treatment.
Amy -- it is truly in YOUR best interest that you consider -- just consider -- reading about the potential risks involved with the MP on other sites (perhaps by doing a google search?). Even Dr. Paul Cheney has expressed reservations about the MP, and to the best of my knowledge, no other leading CFS/Lyme doctor has endorsed it. Correct me if I'm wrong.
You won't find the real horror stories on the MP site. They were "lost" during a revamp of the site about 2-3 years ago, and like others have said, if one asks too many questions, or especially questions the protocol itself, Marshall rudely cuts them off and/or they are banned. So much for free speech.
Secondly, try to put yourself in these patient's positions. The ones I've read about and/or heard about directly, tried and tried and tried to stay on the protocol, telling their doctors and specialists what you have repeated here...that it's just a herx due to a high bacterial load...etc..
But they got worse and worse, and as I described earlier, came close to losing their life because they came so close to kidney failure. If that isn't "treatment failure", then with all due respect, I don't know what is.
And finally, I ask the question again: Has ANYONE gone off the drugs -- anyone, even Marshall or Rennie or whoever is left there -- so that they can say they were CURED by the MP?
Sincerely,
Kelli
p.s. Please note that the references you posted earlier...to my knowledge most of them were talks or presentations. Please correct me if I'm wrong, but it's my understanding that Marshall has tried to get published in prestigious medical journals, only to be turned down. A "PubMed" search will turn up nothing of his that has been accepted in any major journal. But I could be wrong on that and would appreciate a correction if I am... Posts: 12 | From Washington State | Registered: Oct 2007
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posted
sorry...accidentally hit the post button twice...not sure how to delete the duplicate...? Posts: 12 | From Washington State | Registered: Oct 2007
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posted
Can anyone try the Marshall protocol if they're allergic to antibiotics? That is, just try the benicar alone? I think I'm allergic to all abx except clindamycin, and that's not working right now. And would someone herx on benicar alone?
Posts: 13171 | From San Francisco | Registered: May 2006
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
KelliCA: Your post illustrates what I was referring to when I said they have *******ized the word HERX. The addage "no gain without pain" muddies the waters when trying to decide what's going on when a person goes downhill on treatment... also- you can delete your double post by clicking on the tiny piece of paper and pencil which is above your post (it's edit/delete).
And for the poster who is inquiring about trying the MP but is allergic to most abx:
If you subsitute other abx, and don't deprive yourself from vitD it really won't be the MP so it would be best to talk to your doc about what you want to try - since you are limited by what you can take.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Thank you Barb & Kelli. I feel a bit discouraged that I had to keep the questions & thread alive for 2 weeks before really good information came out. I'm going to bookmark this thread so I don't have to spend so much time & energy (and neither do others) in the future should the MP come round in another incarnation by another poster.
I would cut Amy slack except she refuses to even alter the thread header which many have asked her to do. I think she doesn't understand what good scientific research is and because she's feeling better has become what is essentially a convert, and a mouthpiece, who has been fed a certain view and a certain interpretation of existing science, along with a theory, which she believes. Where I think she could behave more responsibly is to begin to think for herself in response to the serious concerns/experiences posted, and certainly revise her thread header.
So the reality is: the MP works very well for a minority who can tolerate the benicar and the low dose antibiotics. Maybe they need the benicar, maybe they don't (ie maybe it's like roadback low dose) but they are able to regain a quality of life which is wonderful. They have to stay on the drugs, i.e. not even Marshall has gone off them. Even so, considering that if like lonestartick they are out and about and enjoying themselves, it's worth it. Meanwhile, another significant minority has dangerous even life threatening side effects that are unfortunately dismissed as herx. These people may take a long time to recover to previous pre-MP levels and probably go through a great deal of unecessary physical and mental anguish. And probably the middle of the bellcurve "fails" the protocol as my hyperbaric doctor did but isn't worse off except for a lot of lost time.
Posts: 2276 | From united states | Registered: Jun 2004
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amyproal
Unregistered
posted
Robin,
You can still do the MP if you have alergies to some of the antibiotics. Each MP antibiotic is chosen from a class of antibiotics. If you are alergic to one of the antibiotics in the group you can work with your doctor and usually substitute in others with similar characteristics. It would think it would unlikely that you would be alergic to all of them. Post your question on the MP site and the moderators will tell you more about how to approach this issue. I know there are people on the treatment who have problems with certain antbiotics and have been able to still do the treatment.
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amyproal
Unregistered
posted
You know, Barb, Oxygenbabe,
I am thinking for myself. I wrote an entire thesis about the MP before I even started the treatment. On my site you will see over 250 referenced scientific papers, only a handful of them Marshalls. All I do everyday is read scientific papers.
One thing I don't understand about your perspectives. What about very low dose antibiotics and Benicar could make a patient feel "worse and worse" besides the herxheimer reaction generated by the meds? I mean, Benicar has a great safety profile and is a simple angiotensis II recpeptor blocker drug which are used all the time in patients without issue. What do you think happened to these people who felt a rise in symptoms but you don't think were herxing. I'm not trying to be patronizing. I just want to get a better idea of your thinking.
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amyproal
Unregistered
posted
One more thing, the following Marshall papers turn up in PubMed. Also, I've never heard anything about a journal not publishing his paper. I know some of the other links that I gave you guys are presentations but if you watch them they are very, very interesting and give the molecular data that forms the backbone of the treatment. Those were the videos that really helped me bring together the different aspects of the MP.
Marshall TG. Related Articles, Links [Unable to display image] Are statins analogues of vitamin D? Lancet. 2006 Oct 7;368(9543):1234; author reply 1235. No abstract available. PMID: 17027719 [PubMed - indexed for MEDLINE] 2: Marshall TG, Lee RE, Marshall FE. Related Articles, Links [Unable to display image] Common angiotensin receptor blockers may directly modulate the immune system via VDR, PPAR and CCR2b. Theor Biol Med Model. 2006 Jan 10;3:1. PMID: 16403216 [PubMed - indexed for MEDLINE] 3: Marshall TG, Marshall FE. Related Articles, Links Sarcoidosis succumbs to antibiotics--implications for autoimmune disease. Autoimmun Rev. 2004 Jun;3(4):295-300. Review. PMID: 15246025 [PubMed - indexed for MEDLINE]
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Amy, I don't mean to offend you, but on this entire thread you have appeared almost blithely heartless in regards to serious side effects. I am not saying you are so, but you certainly appear so. Penny had psuedotumor cerebri, you can die if those goes undiagnosed. Kelli is telling you about someone who almost went into kidney failure, which was apparently disregarded by those on the website, and her specialists demanded she stop or lose her kidney function. It apparently took her 8 months to recover. How do you feel about this? Also, I agree with Barb & others, this "we view this as" and the unconsidered view that *all is herx* takes a reasonable description of a known phenomenon (die-off) and uses it to mask known, demonstrated side effects.
First do no harm, Amy. But I don't think you will change your view.
May I ask why you came on here to promote the protocol anyway? Did you want more readers for your blog? I don't understand it. Trevor Marshall knows the topic has been around lymenet before. And Micul says he pulled the thread asking if anybody was off their drugs. How is an open-ended drug regimen a "cure". They don't say insulin cures diabetes, it does allow diabetics to live longer while they look for a cure.
"Safe" is relative. All drugs have side effects. If you have high blood pressure and could die of a stroke, benicar may be a wise choice. If you have lyme and normal blood pressure maybe not. Apparently some folks were so hypotensive they ended up in the E.R.
Where is your compassion and concern, so that you will adjust the title of your post and add some reservations, that the protocol is not for everyone and in fact on occasion can have disastrous results?
Well I'm not going to revisit this thread anymore. I've done my part and so have others. There really is no more to say. I hope you continue to feel well but I wish you would stop promoting the protocol here.
Posts: 2276 | From united states | Registered: Jun 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Amy said (!!):
I wrote an entire thesis about the MP before I even started the treatment.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I wanted to refer people to two other threads where I have posted that address some of the questions about why I think some do better than others and the reasons to doubt a lot of the conclusions on the benefits of a lot of vitamin D supplementation.
I also want to note the answer to the previous question as to why we would spend time posting about the MP -- the answer is we want to help people. I have written a newsletter for 10 years with that aim. There is not any profit involved for any of us.
I do think one should study the MP thoroughly before starting. Some do feel better even near the beginning by the way, but it is true others may take many months to feel better. But I believe in many cases, they could go slower and do better, like I did.
Well Amy, since you refuse to answer the big question, I guess that tells us what the answer is.
Anyway, if you haven't done it already, here's just one of many links to the possible risks involved with the MP. I have no idea when it was last updated...
Please note however (in fairness) that the author states: "This does not mean that vitamin D deficiency is the only cause of these diseases, or that you will not get them if you take vitamin D. What it does mean is that vitamin D, and the many ways in which it affects a person's health, can no longer be overlooked by the health care industry nor by individuals striving to achieve and maintain a greater state of health."
And he does advise against taking vitamin D if one has sarcoidosis.
And believe it or not, I'm glad you're both feeling better...I just personally wouldn't "risk it", pardon the pun, when there is so little objective oversight, so many horror stories, other optional treatments -- and again, the prospect of having to take the drugs forever.
k.
Posts: 12 | From Washington State | Registered: Oct 2007
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amyproal
Unregistered
posted
I had no idea when i first posted that anyone from the MP had been here before. I thought I'd go to a few forums and tell people my story and about the MP. I put up links to the website because I think they help people understand some of the more complex parts of the MP.
Anyway, you definitely don't have to stay on the MP meds when you are feeling better. A lot of people stay on them because L-form bacteria are being increasingly implicated in aspects of the aging process and they are curious to see just how better they can get...maybe reach a state of health they didn't know was possible. That's why I said many of the recovered people say they feel "better than ever"
But you can just stop the abx when your symptoms of lyme go away and you'll be fine.
posted
"But you can just stop the abx when your symptoms of lyme go away and you'll be fine."
Hi Amy,
Thanks for your reply.
You know people will be asking for names and references and/or proof of your statement!
Don't take it personally, because again I know you're well-intentioned, but I have never read anywhere on any site of any person going off the MP drugs and staying well.
It would be great if you could invite some of them here to share their stories...
I'd personally be curious to know who has been off the drugs the longest and stayed well.
Respectfully,
k.
Posts: 12 | From Washington State | Registered: Oct 2007
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posted
I think Marshall is confused about an elevated level of 1,25 (OH) 2D and what it means. It is my understanding that Marshall believes that 1,25 (OH) 2D is elevated because of dangerously high levels of Vitamin D when it appears, scientifically, that the exact opposite is true.
"as a person becomes vitamin D-deficient, there is an increase in the concentration of parathyroid hormone (PTH), which increases the renal production of 1,25(OH)2D, the circulating concentrations of which often become normal or even elevated."
I also believe when people are having serious kidney problems on the Marshall Protocol that they could be going into kidney failure because of severe Vitamin D deficiency.
posted
Hi Oxygen - I haven't had the chance to follow up on this topic, because my young nieces have been visiting this weekend. They had a school holiday yesterday and an in-service day today. With 4 children underfoot, I haven't had the chance to check the forum.
I saved your response and I tried to reply when the computer/guest room was free and the children were occupied, but it's there hasn't been much time. I see that the topic has evolved some, though... so if you find my response is no longer appropriate or relevant - or if it doesn't make sense due to the many interruptions - I can remove it at your request tomorrow.
(I will say this; I do think it is important to discuss the evolution of the MP protocol, MP board and the heavy handed censorship at that site. I haven't had the chance to read all of the comments, but there were many who were treated very unfairly - no one more so than Penny, who unfairly bore the brunt of Trevor's wrath.)
Back to your original comments on pg 2... You're right about the successes congregating. I think that's true with failures, too, because in those cases it helps to find others who share your circumstances, understand them, and are also looking for further answers. At least that's been my experience based on my journey and my treatment failures along the way.
Success also tends to build on success, so I think Amy is right when she says that it can be important to find other patients who are doing the protocol that you are on and solicit their support. I'll add that I think that's extra helpful if they are a bit ahead of you.
At least that's been my experience. (There have been a few times when I've been able to hang on and continue with a given approach, because by own symptoms mirrored someone else's I knew and trusted. Because I knew they eventually enjoyed good results, I hoped by doing what they did, I would eventually experience improvement. For me that's been most helpful when they've been able to describe my symptoms exactly and then tell me the time frame in which their own resolved. Learning coping methods from them has helped as well.)
My heart breaks for those who felt unsupported and who felt forced to ``slink away in shame.'' I find it inexcusable when others are banned. Most of the ones I saw banned did not deserve such treatment. (It's hard for me to be objective about that, because I have strong feelings.) That site could do more to support patients, but the best support comes from doctors - second would be that from other individuals in the same situation.
On a more personal note, O2: If you haven't treated Babesia and you have a doctor who will help you, that seems to be very important. It's not always caught by testing, but having been around Lymenet and other Lyme forums for a long time, I've observed many patients not succeed until they treated Babesia. That seems to be a real turning point for many, so I would encourage you to consider that.
I say this because, I had lab confirmed Babesia. I did Mepron with Zithromax and it made a difference. In my case, I kept relapsing, even after adding plaquinel and artimisenin. My progress never held, but I think I probably reduced the load and it did help me. For others, it made all the difference and led to their success.
I do think that treating mine may have helped me to treat the Borrelia and other co-infections more easily. As a matter of fact, it was only after treating Babesia that my doctor considered Bartonella. When he finally ran the labs, it really lit up the test. Perhaps addressing Babesia allowed something else to show up. I had always had Bartonella symptoms, but I wasn't sure to trust them. That experience did fit in with V.S.'s paper on the ``carousel of infections'' and how various infections take their turns being dominant as one treats.
It was my Bartonella, relapsing Babesia and Borrelia that convinced me to try the MP, though - especially Bart, because neither Levaquin nor anything else had worked. Plus, I had strong personal feelings about not using medications that patients in the AIDS community were relying on.
I did have strong Babesia symptoms occur about a year into the MP. It almost caused me to drop out. My doctor felt very strongly that it was Babesia and I should stop the MP to treat it. Everything told me to quit the MP then, but instead we backed off to a level I could tolerate. It took about 6 weeks for me to notice, but that's when I really began to gain ground and my progress shot through the roof after that.
(However, I have had doctors tell me that similar SOB and Babesia symptoms can occur as a result of Herxing too heavily, so that may have been the case. Sadly, I don't have any way of really knowing, since that is about the only point where I haven't followed up with traditional lab work to confirm an infection for economic reasons. The Babesia-like symptoms did clear.)
For clarity, I do know that I was still lab-positive when I started the MP and it didn't show up the last time we tested, but I haven't retested lately. (It's hard to want to spend more money on lab panels, but I should probably consider doing it for the sake of others. As I transition off, I think that may be something I'll want to splurge on.)
You are correct that there are more pathogens than just the occult, CWDs, but since many of those are thought to be intracellular (ie. mycoplasma), I wonder whether or not they may be playing the role of the stealth viruses that the CFS researchers are seeking.
I am putting that out there, because according to Suholdolnik, viral infections and intracellular infections dysregulate the Rnase-L pathway. That pathway is more than capable of causing the deep fatigue, flue-like symptoms etc. When it runs amuck, low molecular weight Rnase-L is produced. It destroys both viral and host messenger RNA, which affects protein synthesis and leads to metabolic dysfunction. I've also heard it referred to as a ``big black hole for ATP''.
There are some researchers who suspect that this may be what first sets in motion a cascade of events that eventually interfere with the patient's ability to transfer and utilize oxygen: If that happens, they then become breeding grounds for facultative anaerobes such as Borrelia & Candida. Anyway, I wonder if that pathway might be affected by Valcyte. I know Rnase-L is affected by Ampligen.
You mentioned Candida... I do know of patients, including myself, who have had major struggles with fungal infections. I came from that background. So much so that I even met Billy Crook on a number of occasions, because he was friends with my mom. As much as I adore him and his work, in retrospect I think that was just another mis-diagnosis - or just another co-infection- along the way to identifying LD.
He was a tremendous support to me, but to be honest, I didn't really ever get a hold of my Candida problems until treating Lyme disease with antibiotics. Ironically, I had avoided antibiotics for over a decade because of Candida. I haven't had any problems with Candida at all on the MP.
Prior to my Lyme diagnosis and treatment, I did have some improvement with diet and some of the antifungals, but my overall health trend was in a downward direction. However, during my own pre-MP research, I stumbled across a journal article that indicated the antifungal I was most successful with affected 1,25 D. That finding left me rather curious and further convinced me the MP was worth trying.
I really wasn't convinced until my symptoms began to fall by the wayside. I had sort of experienced that before on high ABX protocols, especially antibiotics that attacked the cell wall, but any reduction in symptoms was only ever very short-lived and was lost immediately after stopping those drugs, sometimes even before.
For instance, I followed Art D's progress with high dose amoxicillin and enjoyed initial success, but my immune system never threw off other infections and exposures, even while on it. I was still on it when I relapsed hard. Of course, that was in the days when co-infections were not as widely accepted or addressed. (My experience has caused me to wonder how he faired after he dropped out of sight and became more private. Initial reports were good, but I've after that I never head anything more.)
Shortly after doing Amoxicillin, my Bowen Borrelia titer was the worst it's ever been. It changed dramatically for the better on the MP, but that test isn't offered anymore. (I found that intriguing, but I wasn't completely comfortable with that lab or their methods -but that's a completely different discussion. What does intrigue me is the fact that my immune system never really became fully functional until the MP. I noticed some improvement while I was avoiding light and D in the months I spent researching the MP, but my real improvement came only after I was on the full MP for 2 1/2 years. By that point I was enjoying great health and exposures to Strep, colds, and flu had ceased to bother me.
I was one of the patients who fit the model for the MP D dysregulation and addressing that seems to have made the real difference for me.
My husband had much more normal D levels, so I was concerned when he opted for it. It seemed to kick his immune system into over drive at first, uncomfortably so. In the end, though, it's really worked well for him too. I have heard that one doctor may use lower Benicar and individualize it for that subgroup of patients, but I've no longer kept up enough to know what the school of thought is on that.
On the other hand, my dad is in his 70's and works full time. He had some serious health problems, but he wasn't interested in stopping at his age to do the MP. He does not take any antibiotics, just D avoidance, but that seems to be working really well for him.
Posts: 487 | From USA | Registered: Feb 2002
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Lonestar, I appreciate such a long, considered, considerate, intelligent, caring, *and* insightful post. Some of your theories may indeed be right on the mark.
I'll offer a few thoughts of my own.
First, again, it's working for you and that's great. If your symptoms were mainly increased "herx" which you'd been through many times before, without any life threatening reactions, I can see why you would stay on it and I'm glad it paid off.
Second, thank you for your compassion for those who were ill-treated.
I agree about babesia. But my fungal situation is really rather unusual. It is systemic, and I have a very strong antibody/allergic response. I remember my candida antibodies being about 200 times normal years ago. And that doesn't take into account other fungi. When I first got *this* lyme tickbite (I think I got one at age 21 as well), and got so sick, I did do two, then four weeks of doxycycline. The fungal issues just got worse and worse. My ears and sinuses were totally stuffed, I couldn't do hyperbaric because I would get terrible vertigo from the ears being so stuffed, my bladder was burning, my digestion was shot to hell and I became extremely thin, I had diarrhea for months afterwards, *and*, I became so reactive to carbohydrates that even a spoonful of beans would stimulate so much fungal growth that I would be in tears from pain.
You might wonder if it is indeed fungal growth but I know my body pretty well. I also feel doxycycline was a lousy drug to treat the lyme. About 2 years ago I took about two weeks of amoxicillin for a tooth problem, I decided to double the dose to hit some lyme. So I took 3 grams a day, and my lyme symptoms started to clear up in just a few days. I had no herxheimer. My neck was much more mobile, as my whole body, and my buzzing stopped. So, I think my case of lyme is amoxicillin responsive (like Art D.) but I can't do what he did. I assume he's fine. Usually if you don't hear from folks they have put it behind them.
As to the babesia. I think it is a strange bug and it wasn't your immune system that failed to conquer it. If you read the literature, which I'm sure your Mom has, no current regimen cures it. The dog studies are particularly sobering. You can totally clear a dog's blood of it, seem to have completely cured it, pass that clean blood to uninfected dogs, and half will get babesia.
Thus much is not known about the bug. What species does it even fall into? How many strains are there? How pathogenic are they?
I do think it damages the endothelial lining of all the blood vessels, where it may live in part, and that IT may be responsible for things like lyme-associated vasculitis, which sometimes can be so severe. We say it's lyme but I wonder often if it's babesia.
I can only plan to treat it with herbs. I have to research cryptolepis.
However, I will say, I do think I've limited babesia's potential damage with my home chamber.
I'm assuming ketaconazole is the 1-25 drug you're speaking of.
Anyway, glad you're doing well. You strike such a nice middle balance it is a pleasure reading your posts.
Posts: 2276 | From united states | Registered: Jun 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Note to Oxy: I spoke to Art Doherty on the phone a while back, he is doing great, full remission, out enjoying life again!)!(*)! (Heck, another success story*)! Yes, that was high dose amoxi-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Lonestar, I can't thank you enough for the most thoughtful, careful, and comprehensive response by an MP user that I've ever read.
I'm very grateful for the time you've taken to lay this out. When and if members of our LD group are interested in the MP, I finally feel that I have a solid discussion to refer them to.
Oxygenbabe, thank you too for asking the questions you ask, thanks for the way you ask them, and thanks for helping to turn this thread into a surprisingly helpful one.
I couldn't agree more with you about babesia. For some people, my hubby included, it seems to be the most pernicious, egregious bug of all. He's been free of babesia sx for 6 whole weeks after a brutal regimen -- if this lasts for 6 months I'll begin to feel truly hopeful.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Please let us know, minou, update us in a month or two?
There are several scientists with the capacity to do assays of hundreds or thousands of drugs on pathogens. They discover drugs that surprisingly inhibit the pathogen, that are not necessarily antibiotics etc. One recently did so for leishmaniasis. "However, researchers at Durham University have now developed a screening system to provide new insight into the biochemical processes at play. As a result they have identified and characterised a key enzyme which helps produce an essential cell component of protozoa called a `complex sphingolipid', plus an inhibitor which specifically acts against this enzyme. The team have recently filed a patent for the system, which could be used in the search for non-toxic anti-protozoan drugs."
I have info on another who was doing it for malaria and other bugs several years ago. Life challenges keep getting in the way of me trying to contact them and convince them to do it for tickborne illnesses. This would not be easy but not impossible. I would probably first have to assemble letters from researchers/doctors who are concerned. I wish I were independently wealthy, not only to do to the max all treatments that help me, but also, to work on things like this. There are probably drugs out there right now that are better treatments for some of these bugs.
Posts: 2276 | From united states | Registered: Jun 2004
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and see the last one third. The phenomenon of elevated 1,25D with low 25D has been shown to not be related to secondary hyperparathyroidism in the studies that looked into it specifically (in RA, sarcoidosis and inflammatory bowel disease). Of course, in individual cases, particularly when there is inadequate calcium intake, it can occur. Most of the studies looking at that condition do not first make sure the calcium intake is adequate.
If lowering vitamin D were causing kidney failure, we would all have it and most people's kidneys are functioning fine on the MP. A know of a case where a patient seemed to be having kidney failure and the doctor blamed it on Benicar. She had started moving too fast on the MP and her Herxing had gotten out of control. She was able, with the help of the MP board, to slow the Herxing and her kidneys recovered. Now, even her nephrologist realizes it was not the Benicar, though he doesn't understand the MP. She has found that she has had to go extremely slow, but she got through that bad spell and her kidneys are fine. In fact, she still is only on low dose mino. In her case, her immune response is more vigourous than others. So, it takes very little antibiotic to get all the Herxing her body can handle.
Also, someone mentioned a sensitivity to Benicar. I have found that very occasionally, that can be an issue. But fortunately, over several months, I was able to figure out that this issue could be resolved by identifying foods that contained substances that cross react with Benicar. I wrote an article about this at: http://members.aol.com/SynergyHN/CGA10-3a .
I think this sensitivity issue may be why some don't do well on the MP. I think if I had not reduced my food sensitivities greatly, I would not have been able to do the MP, or at least would have had much more difficulty.
Also, most people do not have to avoid sunlight all that much on the MP if they are careful about using sunscreens that contain zinc oxide and/or ketoconazole cream and wear a hat and the right kind of sunglasses. The ability of the micronized zinc oxide to protect people was not known a couple years ago. However, there is a small minority who do not find these precautions to be adequate and must avoid the sun much more carefully for at least a year or two-- sometimes more.
Joyce Waterhouse PS My own perspective is that I don't want anyone to try the MP based on what I say, but want them to study all their options and decide for themselves. I am just glad that I heard about the MP when I did, and I want to make sure others have that opportunity.
-------------------- Joyce Posts: 82 | From Pasadena, CA, USA | Registered: Jan 2005
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