posted
I went to see a doctor on the list of LLMD's in Washington State today, and she seemed surprised (and not that pleased) to be able to be tracked down in such a manner. She does not treat according to the ILADS (Burrascano) Protocol (which I thought was basically what LLMD meant...), and in fact she strongly disagrees with it.
One of her objections was that it seems like an "indefinite" treatment of antibiotics. She was, however, strongly in support of the Marshall Protocol. It seems odd to me that the MP seems to go on for several years, so her criticism of antibiotics suggested by Burrascano being indefinite was very curious. It made me wonder if politics are yet again at play...she was the only one of all the LLMD's that my insurance WILL cover.
Anyway, politics aside...what do people think of the Marshall protocol?? Does it work? Is it safe? Does anyone know more about if the L-form is the same as the cyst form (as Burrascano says they may or may not be the same thing)?
I've read that some people think the Marshall Protocol is a life-saver, but people have said that about the ILADS protocol also, and they seem to be at odds with each other.
I'm (like most) incredibly overwhelmed by all of this, and it's still relatively early in my case, so I'm anxious to do something as quickly as possible, but I want to make sure I do the RIGHT thing. Any input will be appreciated. Thanks all, AJC
Posts: 6 | From Seacoast, NH | Registered: Dec 2009
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posted
I should add that, while some people claim the MP as a life-saver, others have also testified as it being a complete "scam" - in fact when typing in "Marshall Proto...", Google immediately suggested that I meant "Marshall Protocol Scam."
It seems like there is a lot of scientific support for it. Some of the resources I've noticed already are....
Very confused as to the best route to take. It seems like every option I finally think of as being good, there are just as many people or more saying it's absolutely NOT the way to go. I've hit this wall with every treatment option I've had presented to me. There has to be a "best bet" out there, just trying to find it. Thanks again...
Posts: 6 | From Seacoast, NH | Registered: Dec 2009
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Just because a doctor is listed as an LLMD doesn not mean they will give long courses of abx.
The Marshall Protocol will draw out deeply divided opinions.
It seems to me that the MP is a good idea if you have very high levels of a form of Vitamin D. (there are basically 4 different forms of vitamin D). So first you need to get tested for all these forms. IF none of them come back high, I doubt the MP will help you.
Also, there is all kind of evidence that Vitamin D is very improtant in preventing other diseases. In fact, there is good evidnece that vitamin D can lower inflamation while also fighting infections.
In fact, some LLMDs are insitent that lyme patients get enough Vitamin D.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
I'm pretty sure I know the doctor you're seeing. She and her office manager became convinced of the MP's value because of their own personal success healing CFS & Lyme with it.
Please feel free to search my past posts on the MP. I credit it with my own healing as well as my husband's, but searches will provide discussions with a variety of pros and cons.
I need to get back to researching a topic for another patient and I'm behind schedule. In the meantime, you might consult those like Semper fi, Jar Jar and others like me, who have had positive experiences, as well as discussing it with Nomoremuscles and those who have personal experiences that were not beneficial.
Personally, I tend to rely more on sources with personal MP experience, both pro and con, more than those who issue warnings based on rumor and innuendo. However, that's only because I'm convinced I would still be ill had I listened to the many naysayers who tried to dissuade me from doing what proved right for me as an individual.
Wishing you every success.
Posts: 487 | From USA | Registered: Feb 2002
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posted
I agree with Lonestartick...I have had good results thus far with MP.
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
I have seen the Doc you have mentioned. If you decide to do the MP she would be one of the best to use as she has worked with several hundred mp patients over the last few years. Due to distance I started seeing a closer Dr. but I really liked her.
It is not for everyone but there are people on this board that do not like the protocol and ther e are several people over the years on this board that have recovered on it. I have gotten good results from it.
You really need to think it out and see if you can really follow it by limiting sun and Vita D. My first couple of years I was trying to play Super Dad and spent too much time in the sun for my kids sporting events. When I really started following the protocol really strict was when I started to improve.
Feel free to pm me if you need to. Best of luck whatever you decide to do.
Posts: 805 | From Utopia | Registered: Feb 2006
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Dr. K., who is a lyme literate medical doctor, who uses antimicrobials as well as abx (after general body cleanup) has had a number of patients who wanted to try the Marshall Protocol and whom he supported in that respect. He tells that only one patient benefitted from the MP and that patient actually was diagnosed with sarcoidosis.
I never tried it because I was already well under Dr.K's regimen, when the MP became known several years ago. I love light and the sun and we take varying amounts of D3.
We live in WA State - I am not familiar with the doctor you refer to.
Hope you find your own comfort level. It is the most important part in healing.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- AJC,
Sorry for your disappointment.
First, I would never hire a specialist who had only one way to approach any problem. If this doctor will only treat with MP, I would run, not walk, away.
Please contact the person who gave you the LLMD list about this. Yes, here - for our casual communcation - LLMD is supposed to mean an ILADS-educated lyme literate medical doctor.
There are also some excellent ILADS-educated LL NDs in Seattle area (ND = naturopathic physician). Call Bastyr Univeristy of Naturopathic Medicine (in your backyard) and see who they suggest for lyme and then be sure that person is ILADS -educated or an ILADS member.
If an LL ND, ask if they incorporate abx (antibiotics). I'm in Oregon and we have no LLMDs but a couple LL NDs. NDs in this state can prescribe abx and are under a different licensing body.
Now, not all NDs are LL, by any stretch of the imagination. I've been to many who are not and would advise only seeing one who is LL. It makes a huge difference.
Whether LLMD or LL ND, they may not go exactly by ILADS or Burrascano's guidelines (and the two are not the same) but they will have READ them, and also read other ILADS work, attended seminars, etc.
The idea with a LL doctor is that they KNOW all about the spirochete in all it's complexity and they also know all about all the other tick-borne infections. Hopefully, they will also know about other chronic stealth infections such as Cpn, HHV-6, XMRV, etc. that many lyme patients also have.
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Now, all that considered, as others above have stated, they've had some success and this doctor seems to have had many successes. So, IF you quality for the MP protocol and after you determine if it will be a good fit for you, you may actually be okay.
Below are some thoughts to consider as you do your personal research.
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I prepared for the MP and did a test run with Benicar but was seriously derailed after the first dose. Then, months later, tried again. Benicar really did a number on me.
I hear it helps some lyme pts with inflammation but I think there are much safer methods to do that.
But, then when my vitamin D tests came back, I saw that I was not supposed to do the MP. It is ONLY for those with high vitamin D levels, not for everyone. In fact, as GiGi mentions, vitamin D3 is vital for most people, and lyme patients are often deficient.
Have you gotten the tests needed regarding this and what do your levels report for both the Vitamin D tests the MP suggests?
After much reading - always wanting to be fair, saying, "well, it has helped some and read J.C. Waterhouse's articles on her success" my opinion is that it can be very dangerous and very limiting in many regards. But, if a good fit, it can work.
Search at the website for The Townsend Letters for their whole issue on lyme a couple years ago - and within that is also a series of articles by J.C. Waterhouse.
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interjection. I just checked and this will get you started at Google - many good links pop up:
Search: "Waterhouse" "Marshall Protocol"
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She goes into excellent detail about the long road to her success with MP.
My concerns - and something that you might also have to think about:
For instance, supplements are not allowed. So, just how the heck are you going to protect your liver from the antibiotics if you can't take liver support supplements?
How the heck are you going to help support your adrenals if you can't take some of the adrenal support measures?
How would you address the issue of heavy metal detox that all lyme patients must consider?
The MP does not have the capacity to encompass all this partly, and to their credit with full understanding, any - ANY - alternative approach is not considered the MP. It must be done precisely as designed. Precisely.
This does not allow for individualized medicine as most lyme patients really need.
MP also does not address other tick-borne infections and, actually, not all the stages, forms and cycles of the spirochete.
Do some lyme patients do well with MP? Some have, indeed. Have all who have done it precisely seen benefit? No. Have some been harmed? Yes.
Does the MP look at some issues that while not directly about infection from lyme are still very important to the understanding of how lyme (or other infections) or immune function derails some patients worse than others? Yes.
Can that knowledge/research be incorporated into other protocols if the MP is not suitable for a particular patient? Yes.
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You might check out a similar site, but one that does NOT use Benicar nor restrict vitamin D.
I tried this but could not tolerate the minocycline due to high tinnitus. Others seem to do okay, better with the timed-released pelleted version, Minocin.
I am not sure, but think that nutritional supplements can also be part of this protocol, as a doctor feels the need. RoadBack is NOT a lyme protocol. It's just that many lyme patients do benefit from it.
After I could not take the mino, I tried it with doxy - and tried at least 6 times over as many months but each time I would break out in silver dollar sized rashes that were too unbearable to continue. It's pretty clear that I just can't do doxy.
posted
Keebler this doctor has no desire to be a LLMD due to the fact how LLMD's are being treated. She realizes that people with CFS, Lyme and FM. have special needs and does address special needs of these patients besides the Trevor M. way of saying my way or the highway. She went from being disabled to back running a busy full time medical office due to the MP. But she and Trevor have gone their own way as she realizes additional supplements and meds are needed for lyme,cfs, fm. So what I'm saying she is a good doc if one decided to do the MP as she also adds things that helped her recovery with the mp. If one wants to use high dose abx and IV's she would not be the Dr. to choose. If one chooses the MP she has more experience with it then any other Dr. in the U.S.
Posts: 805 | From Utopia | Registered: Feb 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, jarjar, well, I'm glad to hear that she has more experience than what I thought. Thanks for clarifying that.
I'm glad to hear she has experience with adjunct modalities/supplements, too, as that would have to be very specific if on the MP so as not to toss the whole design of that off the tracks.
I'm glad to hear she has success with MP
Good luck with whatever you decide. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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