Topic: The Marshall Protocol - a cure for Lyme Disease
amyproal
Unregistered
posted
Hello everyone,
My name is Amy Proal. I write for the science blog Bacteriality.com. I've had severe chronic fatigue sydrome (and probably Lyme disease since i was never tested but had all the symptoms) for the last four years. But I'm here to tell you about a medical treatment called the Marshall Protocol that is completely CURING the disease. I went from bedridden two years ago, and now am living a normal life - I'm working and even had the time to start my own blog about the treatment. If neccessary, I may even quit my job so that I have more time to write about the Marshall Protocol. That is how strongly I feel people need to know about this treatment. Many people with lyme are reporting improvement and recovery. There are thousands of people on the treatment.
Here is a fascinating interview with a woman recovering from Lyme on the MP:
The Marshall Protocol uses pulsed, low-dose antibiotics to wear away at L-form bacteria, bacteria that have changed form and lack cell walls, making it easy for them to live for long periods of time inside the cells of the immune system. Scientist have known about these bacteria since 1895. You can see many pictures of them on my site.
The key to the Marshall Protocol is that only low-dose, pulsed antibiotics can wear away at these mutated forms of bacteria. The low concentrations of the antibiotics are able to penetrate inside the cells where the bacteria hide. High dose antibiotics can't achieve this.
Also the treatment uses a medication called Benicar to activate the immune system. The medication binds the receptor that controls the activity of the innate immune system and activates it. This means that each person's OWN immune system, with the help of the low-dose anitibiotics can gradaually wear away at the L-form bacteria. The death of the bacteria results in a "Herx" or immunopathological reaction where the body must deal with the effects (toxins, cytokines etc) of the dying bacteria.
It's not an easy treatment and takes several years to complete. But if you truly want to get your health back..it works.
Here are some more interviews with patients reporting recovery on the treatment.
Marshall Protocol.com is a study site in which patients are part of a Phase 2 sutdy. Anyone can join and participate. The treatment is free and questions are answered by members of Autoimmunity Research Foundation, a California-based non profit group.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
So why have most of the major LLMDs that have tried it at one time or another abandoned the MP and generally found it to be disappointing? I think that proposing the MP as a cure is a bit misleading. I am not suggesting it may not help some people and attempt to be open to all of these therapies - who knows - maybe I will consider it at some point, but I think that we need to be realistic with any claims...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Well, well... so what about the Marshall Protocol after all?
It comes up on this board every few months. I have read some truly amazing stories from people on it, and my previous LLMD wanted me to try it, as I was only worse after two years of orals.
I am on IV now, and steadily getting sicker and sicker frankly. I've herxed, and I've gotten worse, and the high dose IV so far is seeming to make me just plain worse.
It's a subtle difference, but many get better with IV after several months to a year, but I don't think that's what's happening to me (although could be Lyme negativity here, I don't know).
The issues with the MP I've heard is that some people do not tolerate the Benicar, some get very sick from it, and some can't take the herxing. Plus staying out the sun for 3 years is really extreme.
Also, it seems that any negative reports are routinely quashed on the MP board (which may be necessary with infection-induced negativity, I don't know). I hear about some serious fights on there.
But it certainly is something to think about. Those who do report success report feeling soooo good. It's hard to ignore...
Plus, reading that Dr. F herself, from NJ, is actually putting some patients on the MP really makes one think, because she is very good, and very bright.
Thanks for giving me something to think about, although I should probably at least TRY to survive the 8 months of IV before I totally give up...
Congrats on your healing, and hope you continue to get stronger and stronger.
Thanks for your interest. I'm not trying to say the MP is easy. It's really difficult to manage the herx, but it CAN be done. You can adjust your dose of antibiotics so that the reaction only remains as strong as you can (or wish!) to tolerate.
A HUGE problem (and I did this at first) is that people push themselves too hard. The MP seems so long. They take more antibiotics than they can tolerate. The herx goes way up. At this point many people quit, and it's a shame. The key is slow and steady, which I admit is hard because, hey...everyone wants to get better as soon as possible!
If you have a serious case of Lyme the first year or so is just herx, herx, herx. Many people get discouraged. Most people don't report much improvement until at least a year or two into the therapy, sometimes more. So you have to hang in there because then things start getting better, and better....One thing I can say is that the treatment isn't any worse than having the disease in the first place, or doing some of these difficult IV therapies.
And yes, after a few years you are CURED. Truly. No more bacteria. No more disease. It's that simple.
Scott, maybe you've heard of people that didn't stick with the MP, but c'mon, there are tons of people with Lyme on the board who are absolutely happy with the treatment.
There really arn't any fights on the board anymore. I know few years ago there something, but i've never had any problems whatsoever. Actually, I've made so great friends on the board and find the support to be amazing.
posted
Also, my first LLMD was telling me about another doctor up north who is doing a less extreme version of the MP, with less of a dose of Benicar and higher abx, and that he was seeing LESS herx reactions that way and better overall healing without the agony...
My doc wanted me to do that. I elected to go with heavy-duty IV instead, but I am having troubles on it now (IV Doxy, it's killin' me - herx? or worse?)
I dunno, I will try to push through, but I am intrigued. It's certainly worth looking into if you are failing on abx... just my 2c. Though I've heard some cannot tolerate Benicar... hmmm.
Posts: 194 | Registered: Jul 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Welcome Amy!*)*)!!
I've seen your blog. I am glad you are doing well. I really am. But trumpeting the Marshall protocol as a cure would be like me saying IV Rocephin cures everyone, it doesn't. Wish it did! I echo BorreliaBrain & Cavey! There is no one-size-fits-all with Lyme/TBDs!!!
Locally we have had 2 people try Marshall.
Both guys.
1 says "Jury is still out."
1 says he had bad experience & it was deleted from website.
So our of the two locals who have tried it- neither was cured- one did badly and one may be helped but after a YEAR of his life devoted to the protocol can't even give a definite opinion YET on whether it was helped him! So...
a cure? No.
I HOPE it does cure SOME people. I know IV Rocepihn helps the vast majority of the people who go on it, but I don't go around saying it's the cure for all Lyme, because it's not. It worked for me though- thank goodness.
Let's all keep sharing what helped us, including you Amy, I am glad you are here.
Welcome, Truly,
-------------------- 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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SForsgren
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posted
My understanding is that a key piece of the puzzle is D 1,25 vs. D 25 levels. If 1,25 is not significantly elevated over 25, then one may be less of a candidate for the MP and it may convey fewer benefits. Is that a reasonable understanding? Should we be talking about those things that may select whether or not someone is even a good candidate before we suggest it works for everyone?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Amy, What about coinfections??? Does Marshall Protocol hit coinfections? Lyme Disease Complex is much more than 'just' borrelia.
Posts: 844 | From home | Registered: Sep 2006
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posted
I agree, Scott. That's the information and results that I would like to see discussed more openly as well. Over on the MP board, I have yet to see them say "You don't need the MP". They just cut and paste a repsonse that they have used a 1000 times and say you need the MP ragardless of the test results.
I sincerely wish that they had data showing how people fared based on their initial 1,25-D result. Some people are barely elevated and probably have other isses that are primary causing poor results on the MP.
I actually had my 1-25-D tested out of curiousity and it was extremely high(95). But because of all the horror stories I am too scared to really consider it. Now If they could show me how people with 1,25-D over 60 resond better then I would be more inclined. In 4 years, the MP board has yet to show me any solid proof as to what subsets of patients improve and which don't. They also have the same 4 or 5 people posting in the "Succes Stories" section over and over again. And even those people are not even close to "Cured". In Fact a lot of them seem to be still worse off than many of us.
Posts: 26 | From Memphis, TN | Registered: Apr 2007
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posted
I can report that I've been treated for 8 months with a variant of the MP with GOOD results.
My doc used Benciar (worked up to 80mg/day), Cefzil (Minocycline was his first choice, but I had a possible drug reaction to it and had to stop it), and Tindamax after a couple months.
However, he prefers to supplement to get the 25-Hydroxy levels up. Mine were initially 17 (very low). 1.25 + 25 Hydroxy was 26.9...
He is of the opinion that you should get the 25-hydroxy levels UP, and that the Vit-D depravation is a bad idea.
Last blood work back in June was 25-hydroxy of 55, unfortunately I don't have the 1.25 + 25 Hydroxy in front of me, but it was barely changed at all as I recall.
I'm off all abx 8 weeks now, with no recurrence of symptoms, thank God.
Posts: 131 | From PA | Registered: Aug 2007
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I remember you from the MP website. I rather doubt you will remember me, because I was one of the earliest Lyme patients to try the MP, so I may have been a bit before your time. I credit the MP for giving me back my life after disabling Lyme and co-infections.
The jury is still out yet as to whether or not it will be my ``cure''. Although it feels more like a ``cure'' than anything I have ever experienced, only a lot of time will tell whether or not this is really it. The more time goes by, the better I feel, but until I'm many years beyond relapse, I just won't know.
That said, I'm enjoying the fact that it really does feel that way and I really do feel well. Like most late-stage/chronic Lymies, I am extremely cautious (and also put off) when I hear the ``cure'' word tossed around. That said, my D metabolism, light and sun sensitivity have all normalized, as has my health and energy level...
So, while I consider that somewhat miraculous, even I am not ready to say I'm cured; although, I am thoroughly enjoying a level of health I have never before experienced. The best part is that I finally seem to have health I can actually take for granted.
After spending decades being ill, that means a lot to me, especially now that I can more than keep up with my healthiest friends and family members.
Thank you for sharing your story and your results. I'm looking forward to checking out your website. Please keep sharing.
Be well. Posts: 487 | From USA | Registered: Feb 2002
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oxygenbabe
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Member # 5831
posted
Why would low dose antibiotics kill these bacteria and high dose would not? Why would low dose enter a cell and high dose would not? I don't understand any biological mechanism by which the cell would reject the antibiotics. Whatever is going to enter the cell will enter it. I clicked on the various links but did not see any backup research/theory for this statement. It was simply a statement.
In addition, I am *really* glad for those who got their health back including lonestartick I remember her mom posting here often. However, others got very ill even dangerously ill on the MP. Those stories are not allowed on the site. I've read a few at the yahoo group Infection & Inflammation. One person nearly died!
Posts: 2276 | From united states | Registered: Jun 2004
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CaliforniaLyme
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It's interesting- I wish we could explore, too, what the differences are as to who succeeds and who fails- it is so hard because there are so many variables!!
Tissue types- HLDR 2 and 4 and all the others Diseases caused directly by various bugs- Anaplasma Babesia Lyme TBE viruses Mitochrondrial bacteria just being discovered? fungi/molds? bodily processes like yeast gone awry as secondary process casacde Secondary cascade presentations from diseases-
So many things!!!
Nice thread, thank you Amy-
and good questions, Oxy- remember the folks at Roadback.org and the folks at rheumatic.org following the teachings of Dr. TM Brown (not LLMD or maybe the original*)! have been using
low dose antibiotics
for rheumatic diseases for decades!!! the reason low dose- because knowing they plan on being on them for so long to minimize adverse events/side effects- my understanding anyway- and also good PR frankly, at roadback and rheumatic.org, any dose is referred to as "low dose"*)! although the ones they publicly name usually fit that description*)!
Anyway, lots of us on similar paths, some paths different names but same thing*)!
The Roadback people are very organized and spend all their efforts toward getting scientific trials going- my angel LLMD went to a conference of theirs and was very impressed with them!!!!!!!! THAT was when he relaxed about longterm abx- because he met people there who had been on antibiotics for 20-30 years! who were all doing great and who had terrible rheumatic diseases without abx-
anyway, take care all, Sincerely,
-------------------- 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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oxygenbabe
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Perhaps it's wrong to say "more effective" and that low dose can get into the cell when high dose can't. That's what bothered me.
Perhaps low dose is much better tolerated (remember my asking about low dose rocephin that's working for barksplinter's wife) and inhibits the bugs, reducing their population over time.
Posts: 2276 | From united states | Registered: Jun 2004
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quote:Originally posted by Lonestartick: Like most late-stage/chronic Lymies, I am extremely cautious (and also put off) when I hear the ``cure'' word tossed around.
No kidding!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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amyproal
Unregistered
posted
Thanks everyone for your interest.
Cure is a somewhat provocative term, but I don't use it lightly. Why do I use it then? Because the MP site, and the success stories in particular are filled with people who say they are ``better than ever.''
On my blog Bacteriality.com, I interview MP patients. Do you know how many patients I can choose from? The last person I interviewed, a 71 year old Lyme patient, told me she felt like she was in college. Most all the patients who do this treatment and follow through on it do not equivocate about their level of wellness.
The MP site has 5,000 members, 200 medical professionals on the site, 34,000 visitors each month, and 500,000 page views per month. Either a lot of people are highly suggestible or....
There's no hiding the fact that the MP is exceedingly ambitious. It's hard to convince people that a single form of therapy can help patients with a variety of diseases. But patients with fibromyalgia and Lyme and CFS have the same tell-tale reactions, when a number (yes, there are a lot now) of them gotten to the point where they can finally say, hey, my health is better than ever.
I don't differentiate between different kinds of Lyme or, frankly, different ``autoimmune'' diseases. If you can generate a herx with the MP, there's a good chance it can make you well. I've talked to too many people with a variety of illnesses to think otherwise.
One of the biggest stumbling blocks towards wider acceptance of the MP is the fact that it is just so darn complicated, and that's why I make an effort on my blog and in places like this forum to communicate what the MP is all about.
In addition to my experience talking to people, I happen to have a reasonable appreciation of how the MP works on a molecular level. All the elements--the Benicar, the vitamin D abstinence, the specific antibiotics, all work together. Frankly, it's frustrating when I read here, for example, how patients and their LLMDs are modifying the MP without regard to the basic concepts of the treatment. There is also only one version of the MP that works. If other variations of the MP generate less herx it just means that the patient is killing less bacteria.
Bill: If you are taking vitamin D, what you are on cannot be called the MP. The treatment simply will not work. High dose vitamin D completely reverses the actions of Benicar. You probably feel good because you aren't killing any bacteria. At this stage of the game you should be feeling a strong herx.
Your ``possible allergic reaction'' to minocycline was undoubtedly herx. The antibiotic was doing nothing less than exactly what it was supposed to do.
Oxygen: The bacteria live inside the cells and only low-dose antibiotics can reach the low concentrations that can penetrate and trickle inside the cell. High dose antibiotics will bind and prevent bacterial proteins from working but they will also bind some of the host proteins and disable them as well. Low-dose antibiotics ensure that only the bacterial proteins get targeted.
SForsgren: The vitamin D blood tests can suggest the level of infection in a patient but are not by any means required to show that a person will respond to the MP. The best way to know if you will respond to the MP is just to take the medications and see how you react.
***
For those of you who have already made up on your mind about the MP, I invite you to reconsider its merit. All these horror stories about the moderators banning negative posts are surely the exception, not the rule.
And, yes, the MP is hard, but isn't that the precisely the kind of treatment you would look for to rid yourself of an infection is that widespread and deeply entrenched?
posted
the marshall protocal kills more pathogens then any antibiotic..it is killing many differant pathogens at the same time..it is not the antibiotic that is doing the killing it is the Immune system..that is the difference..also the vitamin d docs at the same recepter site as steroids rendering the inate immune system useless...that is what the mp is about..and quite frankly is the only peer reviewed literature that seems to work thru sound science.the only problem with it is that it is hard to implement..but on the whole I think that it would work.. eric
Posts: 593 | From long island ny | Registered: Apr 2006
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luvs2ride
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Dr. Thomas M Brown was a rheumatologist who determined mycoplasmas as well as lyme and strep could cause RA. He spent 50 yrs at Georgetown University treating RA with low dose antibiotics. He was after the mycoplasmas. He found the lower doses were more effective than the higher doses and he found pulsing every other day to be more effective than daily dosing.
It isn't the Marshall Protocol. But you may find some answers to your questions about the science behind low dosing.
Few people on that bulletin board claim to be cured, but many are in longterm remission and don't ever intend to stop their antibiotics. Taking it at such a low dose is safe for longterm use.
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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I never claimed to be on the MP, just that my doc is using some aspects of it. You should know by now that there is no one-size fits all treatment for Lymes, and that is what MP claims to be. My doc is a rheumatologist with plenty of clinical experience actually treating people, and has been seeing good results with his "taking from the MP what is useful" approach.
I can't say for 100% certaintity that I'm cured; with the pitiful state of testing available, no one can say yes or no.
I can say that I'm hugely improved; with no relapse so far. I'm grateful I got that far with the doc's help. Other than a leaky gut which is responding to therapy, I'm as near to 100% as I ever expect to get (99+% well).
Before I saw this doc, I was on high-dose Doxycycline interspaced with Tindamax, and felt about the same as on the alternative therapy. I got the massive body rashes which resembled vasculitis after 4 months on Doxy, stopped it, and had an immediate (1 day) recurrence of it when the new doc tried Minocycline. I only got the rash after 4 months of Doxy, well after I was feeling MUCH better. I never got the classic "herx" reaction; many folk never do you know.
quote: Bill: If you are taking vitamin D, what you are on cannot be called the MP. The treatment simply will not work. High dose vitamin D completely reverses the actions of Benicar. You probably feel good because you aren't killing any bacteria. At this stage of the game you should be feeling a strong herx. You may want to read this article about vitamin D http://bacteriality.com/2007/09/15/vitamind/
Your ``possible allergic reaction'' to minocycline was undoubtedly herx. The antibiotic was doing nothing less than exactly what it was supposed to do.
[ 25. September 2007, 07:04 PM: Message edited by: billclo ]
Posts: 131 | From PA | Registered: Aug 2007
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posted
Luvs, the link doesn't work -- do you know another one?
Posts: 13171 | From San Francisco | Registered: May 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by amyproal: Hello everyone,
My name is Amy Proal. I write for the science blog Bacteriality.com. I've had severe chronic fatigue sydrome (and probably Lyme disease since i was never tested but had all the symptoms) for the last four years. But I'm here to tell you about a medical treatment called the Marshall Protocol that is completely CURING the disease. I went from bedridden two years ago, and now am living a normal life - I'm working and even had the time to start my own blog about the treatment.
Hi Amy Iam very happy for you to be feeling better. The Marshall protochol has been around this site before look in my Newbie Links thread. Anyway sweety Iam happy for you but what is curing you is the abx's long term. And it is nice that you came here and offered TheCure but theres been plenty of people here that have tried it with {some} success but eventially they come back here and resume treatment and discuss lyme and coinfection.
And as far as DR Marshall hes not a DR of Medicene although he has a PHD its in a coplete other field.
Anyway I hope you continue to win your battle. It took seven months for my infection to come back after 1.5years of abx's so be aware. And at another time when I went off abx's it only took three days how I new was I got lyme induced encephilitis. So be aware of this when you stop abx's.
And welcome to lymenet!!!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- 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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oxygenbabe
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Hi Amy. I'm sorry but there are people I know personally for whom it didn't work or who got worse (not herx worse) on it, including my former hyperbaric doctor, a Stanford/Harvard MD.
Barksplinter's wife (that's his moniker on lymenet) was bedridden 95% of the time and could not tolerate the marshall protocol but is slowly steadily improving on microdose IV rocephin.
You say "There are tons of people with lyme on the board who are happy with the MP." Can you find them and have them post on here? Tons is a big word. It sounds like an exaggeration.
In addition I know people who, doing abx and EXTRA Vitamin D, have gotten well from CFIDs/lyme, the exact opposite. And there is so much literature out now on the fact that Vitamin D prevents tuberculosis, mycoplasma and other infections. There is a direct correlation between lack of Vitamin D/latitudes where there is not enough sunlight, and cancer, multiple sclerosis etc. How does that square away with the Marshall protocol? Also think in evolutionary terms. We migrated out of Africa where there was tons of sun. We evolved to be in the sun. Those who thrive in low-sun environments like Scandinavia do so in part because they are so fair skinned they can utilize the sun they do get to make Vitamin D. Sanitoriums for TB--people sat out in the sun all day, and imo that allowed them to make enough Vitamin D to kill the bug.
5,000 people registered doesn't mean 5,000 active. I might even have registered years ago and still be counted as registered. And who quoted you the "200 medical professionals". Have you seen their registered names? Are they willing to come forth? Otherwise its unverifiable.
Your statement about the antibiotics is your explanation, even with your visual image of "trickle" but where is the science to back this up? Please show me the science. I wanted a reference, I wanted some peer-review science or a reputable scientist at a reputable university to indicate this is the case. You're stating an opinion: that low dose "trickles" and is therefore effective. It just doesn't sound like science to me.
It could also be that low-dose antibiotics inhibits but does not kill and when you go off you relapse. Who knows.
Again, for those who got well on this, congratulations and truly. But I've heard too many horror stories, including one person who almost died on it, to take it as a wholesale cure as its being promoted.
[ 25. September 2007, 12:34 PM: Message edited by: oxygenbabe ]
Posts: 2276 | From united states | Registered: Jun 2004
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charlie
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posted
....I also seem to remember Rosemary (rosesisland) from AR winding up in the ER with dangerously low BP a few years back from taking benicar which is supposed to be 'self-limiting'.
And the risk of colon cancer seems to be greater with those who avoid sunlight, not to mention the depression caused by living in a bat cave for years.
Also somebody let the cat out of the bag awhile back (I guess similar to giving away a secret handshake) that the mop up MP abx was bactrim at the very end.
Bactrim worked for me right off without the attendant asceticism.
my .02
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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posted
There is so much misinformation here it's ridiculous, but frankly, I don't have the time to address every innaccuracy.
However, I will take the time to strongly admonish the person who automatically dismisses a bad reaction to minocycline as a "herx" because that is not only irresponsible, it's extremely dangerous.
If you do your homework you will find that a very serious side effect of minocycline is Pseudotumor Cerebri (intercranial hypertension) which can cause severe malaise, headaches, nausea, even blindness and death. There are some researchers who theorize that those of us who suffer from chronic infection and CFS (or ME) are already suffering from, or are predisposed to, low grade Intercranial Hypertension. If true, that means that we could be at a much greater risk for Minocycline induced Psuedotumor Cerebri than other people.
Mincoycline can also cause serious thyroid issues in some patients as well as drug induced Lupus. Minocycline is a powerful drug and not given the respect it should be given by the MP community, IMO.
I'd also strongly advise everyone to learn what a herx truly is, and realize that the word is being misused. This wouldn't matter so much if it weren't for people suffering through adverse symptoms because they think "herxing" is a good thing. They could simply be suffering because they're on the wrong meds and are actually making themselves sicker than they need to be.
The theoretical "herx", as it is so commonly being misused today, should NOT be a catch-all explanation for every negative reaction experienced. It's dangerous and stupid, and I'm sick of seeing it constantly used to explain away all negative effects. A herx should NEVER be considered a long term or ongoing process. A true herx is a rapid die-off of bacteria and shouldn't last more than a day or two. It's impossible on low dose abx to kill enough bacteria to cause a real herx. If anything, you could be activating the bacteria's defenses by teasing them with the small amount of abx, causing them to produce a bunch of toxins and multiplying more quickly, making you sicker, not healthier.
Regarding my personal experience with Benicar and the MP. I took large doses of Benicar for over 2 years. It reduced my inflammation tremendously but it did not "cure" me. I could not take minocycline because I developed a severe reaction to it as described above. I did take other antibiotics under the supervision of my doc. And I took them at FULL DOSES with no negative effects. Benicar did not "potentiate" the abx, and Benicar did NOT kill any bugs. The ABX I took killed the bugs. Sun & D avoidance did not help me, and the literature does not support the theory that it helps anyone other than Sarc patients. What Benicar DID do, after two years, was make my thigh muscles extremely weak, and my middle a lot thicker. I finally stopped taking it because I was worried about what was happening to my muscles, and how the low bp might be contributing to hypercoagulation factors in chronic infection. I now take other anti-inflammatories with my antimicrobials. I think both are vitally necessary to treat entrenched, chronic infections (hence our yahoo group, Infection And Inflammation). But I do not believe, after much research and personal experience with the MP, that it is a "cure" or that it is even scientifically supported in any meaningful way. The MP has elements that should be investigated, but that research needs to be done by someone who is objective regarding the pros and cons of the drugs involved.
Please be careful. Please do your homework. Don't take anyone's word as truth without researching it for yourself.
Posts: 142 | From San Diego California | Registered: Apr 2004
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quote:Originally posted by charlie: ....I also seem to remember Rosemary (rosesisland) from AR winding up in the ER with dangerously low BP a few years back from taking benicar which is supposed to be 'self-limiting'.
You are correct!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
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posted
Thank you Pennyhoule!!!
-------------------- 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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oxygenbabe
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posted
Thanks Penny. Cave...I think we were trying to help "newbies" as they say. Certain protocols have inherent serious risks. This includes salt/c and the Marshall protocol. This is where I get concerned, where people can severely injure themselves all the while being told the protocol is curative and the symptoms are all herxes.
It's paying it forward to try to help others with your own knowledge when you yourself have tried and failed a protocol. Unfortunately both lymestrategies (salt/c) and Marshall boards do not allow negative responses and responders to stay on the boards or question. They are banned. And sick people can't always research thoroughly for themselves. So we do them the favor by monitoring when these protocols are promoted, and trying to explain there are risks, so they take some caution.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
The bacteriality.com website and the marshallprotocol.com website have loads of information that can benefit prople looking to understand chronic illness and the treatment of chronic illness. Take a look and you may find some interesting and useful thinking about all sorts of chronic illnesses that have frustrated the medical community and even the well meaning ILADS doctors. If you are at all interested as to how pathogens evade detection, how they can make you chronically sick, how the immune system is compromised by pathogens, why certain antibiotics help and certain antibiotics don't, how antibiotics work, why low dose and pulsed antibiotics work, how the immune function can be restored, you will find helpful information. The MP has adherants who have been sick long enough to have already tried and failed IV rocephin, high dose abx, penicillins and beta lactams, cipro, diflucan, colloidal silver, hyperbaric, rife, etc etc etc. If you wish to try these therapies first go right ahead and join the club, but in my experience the world of chronically ill patients is not full of people who got better that way, but in fact is quite the opposite(and by the way, where are the websites explaning how those therapies work and with patients reporting getting better?)
Posts: 12 | From Weston CT | Registered: Jan 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I just heard that a man I know of is on it, and he says it is very effective at this point for him.
he had been on many year antibiotics by LLMD's and is now on the MP,
I think though that because he had been on orals for several years and IV for a few months, that maybe he is doing ok to be on it?
I am not sure, I just know that he said he had herxed much on it and was feeling very good.
I would say that others try it but be careful and monitor it. I would never have thought this man to be benifiting by it, BUT he is. He is on 2nd phase. He is working, had had lyme for 8 years before treating, something liek this.
Possibly high dose antibiotics, treating coinfections, IV if you can get it, AND the MP for some of us or many of us is may help
Maybe each program has benifit and what the MP does for some of us, regular anitbiotics does not.
Perhaps a trial of it for some of us that are not getting better with regular antibiotics may help?
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am glad to see this subject posted.
I have a neighbor (CDC positive) who is investigating this protocol.
I decided to research it here on Lymenet for her.
She is already extremely deficient in Vitamin D.
I am glad this protocol is helping some people.
One thought keeps going through my mind.
Avoid all sun light for 3 years and take antibiotics....albeit "low dose".
Or......
Take antibiotics for 3 years and enjoy the sun.
I'll take the sun .
Thanks for all of the valuable info. I am printing this thread for my neighbor.
BTW, how does one work while on this protocol?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Prof. Marshall is currently a Director of the Autoimmunity Research Foundation, an Adjunct Professor of the School of Biological Sciences and Biotechnology, Murdoch University (Western Australia), and a past Chair of the Engineering in Medicine and Biology Society of the Ventura IEEE. He is the Patron of the Australian Autoimmunity Foundation.
Based in the heart of Southern California's "Digital Coast", Dr. Marshall is involved in technologies ranging from Immunology, Biomedicine, Autoimmunity, WiFi Security and Internet Infrastructure through RF, Hardware, Software, Audio/Video and Prepress. Previous speaking engagements have included COMDEX, Microprocessor Forums, WLAN/WiFi conferences, and International presentations in a variety of Medical Specialties.
Pasteur once said "In science, chance favors the prepared mind," and Dr. Marshall's career has certainly taken advantage of the many twisty passages in the fields of both Medical Science and Engineering. The best way to find out what he is doing right now is to look at the list of current presentations (above) or browse his recently published scientific papers.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Re the Autoimmunity Research Foundation, a member of our local group investigated the MP (and Trevor Marshall yelled at her on the phone!) and the Autoimmunity resarch Foundation is kind of his own thing- his wife is one of the board members- just fyi it is not an outside deal which selected him- it is his own foundation set up by him- according to her research- she posted that on our local Lyme list-
-------------------- 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'm not sure whether or not who starts or runs a foundation has much to do with anything.
Even the LDF, the LDA, ILADs and Lymenet were once small organizations started by a few caring people whose lives were impacted by disease. I don't hear any of us criticizing them simply because those individuals all felt called to duty. Eventually their work caught on, but most faced opposition and detractors along the way.
Having lost my health many years ago, I have come to know some fascinating people who started health foundations as a result of their own illness and suffering. Some of the people who helped me and my mother find answers early on were: Ethel Snooks, Pat Ganger, Henry Scammel, Gail Nielson, and the Dudleys and the Vanderhoof-Forschners. All of them were just ordinary people who rose above difficult circumstances to start small foundations. Some of these small foundations went on to make a difference in the lives of so many others. Some even went on to host conferences and fund research.
Those very individuals who helped my mother and me are the same individuals who started: The Roadback Foundation, rheumatic.org, CRIF (Candida Research & Information Foundation), the Mycoplasma Registry, and the LDF.
Most of you here are familiar with the above organizations because many of them have since grown and caught on, so now they seem big and less personal. Nevertheless, they all started with very humble beginnings and one or two individuals who gave a darn.
The problem with the ARF is not the research they are doing or the fact that Trevor, his pharmacist wife, a RN-sarc patient, and another patient started it. The problem seems to me to be with how cliquish and controlling they are about their information and how they treat people. I object to the heavy censorship and the fact that private messages are not truly private.
That said, the ARF websites (Sarcinfo & MP) have grown and caught on extremely fast as a result of the growth and impact of the internet. I don't know how anyone might expect them to provide a lot of personal, individual handholding to all members who have since found them. Perhaps some of their problems are growth related, and maybe also related to the fact that the sickest, neediest, most brain-fogged patients tend to find them.
Nevertheless, many people I know have personally been helped by their work. Some continue to post at their website, despite the fact that it is such a controlled environment. However, I know numerous patients like myself and my husband who have been successful with the MP, but who prefer not to post in negative or controlled environments.
My best to all of you in your quest for health and healing.
Posts: 487 | From USA | Registered: Feb 2002
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
The problem is promotion as a wholesale cure.
I went and read some of the testimonials, many gathered by Aussie Barb, but I'll assume she's sincere and has reported them correctly (ie not people posting themselves). They were impressive. Then again, a lot of folks on antibiotics have impressive responses. There are impressive responses for many therapies. The problem is that as Penny posted, there can be serious adverse side effects. The problem is that probably an equal number had no or negative effects. The problem is that it is not put forth as a protocol with benefits, possibly dramatic benefits, but also risks. Benicar is not tolerated by all, neither is minocycline, and some may have other problems like virii or fungi. For instance the Montoya study, 21 of 25 CFIDS patients had remarkable turnarounds on valcyte, a relatively new and strong antiviral. Some went from bedridden for years to active, working, exercising, back to a full life. How this will pan out in larger numbers is unknown but what's nice is he is doing a followup *study* and being held *accountable*. In addition the side effects of valcyte are well known and monitored. Marshall does not take this approach. Practically the opposite. So one ventures very gingerly into this arena in spite of the few with success, even remarkable success, even regaining excellent health, because there might be 20%, 50%, even 75% who didn't. It's impossible to know but personally the few I spoke with who tried the protocol did not improve. However that doesn't mean I disbelieve those I've heard of or read of who did improve.
Marshall does all of us a disservice by squelching *any* dissent or possibility of negative side effects.
Posts: 2276 | From united states | Registered: Jun 2004
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....I think we're all familiar with 'manipulated' studies no matter how gentle the massaging....
Posts: 2804 | From Texas | Registered: Oct 2000
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posted
It's always better to tell the truth about what works and what doesn't and how often. Simple and clean. Should be built into the work -- ie, feedback and studies about outcomes. Maybe someone should tell Marshall this...
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
A dose of skepticism is good given the track record of new Lyme treatments and theories. But it is always amazing, on this site - where there are so many veterans of failed therapies to treat Lyme - how much suspicion is directed toward the MP. Just take a look for yourself at the basis for the protocol and leave the ad hominem and specious arguments aside for the time being.
Posts: 12 | From Weston CT | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
He jumps down peoples throats when he thinks they are not on board with his line of thinking.
I was there yesterday and I cant rember who or thread but he basically told them end of discussion and from what I read it was a legit question.too bad
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
"I've had severe chronic fatigue sydrome (and probably Lyme disease since i was never tested but had all the symptoms) for the last four years."
How can you say you have found the cure for lyme disease when you don't even know if you have it? Lyme disease may have some similar symptoms but it is not CFS.
Posts: 51 | From England | Registered: Oct 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Notice how Amy promised to answer questions and then disappeared when she couldn't?
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Hey y'all, I won't jump into the fire here, but I will be happy to share my experiences with patients that want more information about the MP.
In 2 weeks, it will be one year on the MP. I was disabled before I started, and progressed at an incredible rate -- finding all kinds of weird infections throughout my body (joints, throat, etc.). I know I had Bb and mycoplasma pneumonia, but I am sure there was much more going on; hence, the MP was the more effective approach (at least for me).
The MP is not for woosies, and yes, there may be limitations in the MP site. I can't change that, but I am happy to help others. Email or call if I can help...
Good luck to all of us.
-------------------- 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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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Cold feet, I am really, truly glad it has worked for you!!!!!! I WISH it was a cure for everyone! Truly, I do. Your post seems really sincere and I am glad you are offering to help others-
-------------------- 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
Oxygenbabe,
I did not disapear because I can't answer your questions. i have an entire website about research related to the MP. If you read the pieces on the site you will find the answer to any questions that have been posed here.
I left this discussion because I have never been in a more negative place than this forum. Also because i don't feel that any of these speculation about the MP board are correct and I'm tired of hearing you guys say the same things over and over again when many of you haven't even tried the treatment yourselves.
I'm a very outspoken person and I was never censored on the MP site. Nor have i seen anybody else censored. The board staff try to maintain a certain level of decorum. It's not a chatroom and it's not a place where you can engage in free for all discussions. It's a place where you come to learn about the MP and how to get better.
I don't get you guys. This is about your health, not Dr. Marshall. If Satan was doing a treatment that seemed to be working (and NO I am not comparing Dr. Marshall to satan) I would do the treatment. Because the only person who is going to suffer from not getting better is me. You should try to put aside your feelings for people on the board and instead focus on the science.
Anyway, I find Dr. Marshall to be a really nice guy. It's not easy to run an internet site for patients that are sick and brainfogged and often very confused when they start the treatment. He's defnitely trying his best. He works around the clock day in and day out, without getting paid. I don't even know when he sleeps. He's a scientist, not a PR person. Give him a break if he came off to you as harsh.
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
No, the answers are not on your blog, Amy. I'm sure you're well intentioned but you state Marshall's theories as fact. You state that low dose antibiotics can "trickle" into the cell without binding cell proteins and therefore kill bacteria. I read your info on Vitamin D and it doesn't address my questions or the substantive literature showing it to be anti cancer and anti infective. You ignore, as Marshall does, poor results--you didn't respond to Penny Houle's warnings about minocycline, and she herself experienced a dangerous side effect. She says benicar worked as an anti inflammatory but began to have significant side effects after 2 years. Barksplinter's wife and others he knows had adverse effects and no improvement from the protocol. My former hyperbaric doc did badly on it. Benicar has adverse effects in some and one person in this thread recalls someone ending up in the ER as a result of a dangerous drop in blood pressure on it. The claims are excessive. Some are clearly responding and others are clearly not and there are dangers to the protocol. You address none of this. It isn't negativity--you consider it negativity if people disagree or point out the risks and dangers?
You say it's about our health. That's the point. Open discussion of potential gains and potential risks that may be substantial. Also, you haven't addressed my question about virii or fungi. What of the 21 out of 25 in Montoya's study who improved or got well on Valcyte? Marshall assumes intracellular bacteria as the global cause of autoimmune diseases, it seems to me.
Posts: 2276 | From united states | Registered: Jun 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
As you have just arrived on this site, you are, I guess, not aware that quite a few people from this board did go on the MP. A minority were helped and it seems the majority were not and some got much worse or even suffered dangerous reactions. That does not make a board negative, but you are bringing "news" that we already know about and which has been discussed at length and tried and tested by many on here.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Amy we are not negative we just dont agree.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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