I know the MP is kind of a contervirsal subject, but I just wanted to ask for your HONEST opinions. I hope you can help out!
I did the MP from November 07 till First week of April 08 before I had a definite DX. When I first started I noticed some positive changes. I than took a bad turn and could not get out of a "Herx"...I think it was herx? I'll tell you why breifly.
I was so symptomatic, and couldnt ramp up to 100mg of mino like the guidelines say to. I was just WAY too symptomatic. Because I had to keep going up and down on dosages, all the small progress I had made went to **** and I started feeling VERY sick.
Now you may think I am crazy, but I want to go back on it. I feel it is the ONLY thing I have read that makes sense to WHY I am ill and WHAT to do about it. I have even been getting low grade fevers with Sun Exposure....something that has NEVER happened to me before. That is one thing I hated about the MP was the Light restriction, But to get well I would do anything.
I have talked to so many people that said they would be dead witout it, or at least not living the lives they are now. I know a few people who said that all their LLMD treatments never worked, but as soon as they started on MP they started herxing and healing. I have also been told that the high doses of antibiotics we take actually dont kill any bacteria but surpress inflammation and the immune system which is why there is so much relapsing.
Please keep in mind I am pretty new to all of this and just trying to learn as much as I possibly can. I research my face off and talk to as many people as I can to figure out what I can do to get my life back.
What are your thoughts on the Marshall Protocol?
Is it something you've done or would try?
Thank you so much for your input!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Personally, I would not try it. There are some interesting concepts there, but some of them don't make sense to me.
The vitamin D restriction is one that doesn't make sense. I understand that some may be out of balance between the kinds of D, and that supplementation isn't always the answer, but limiting sun exposure doesn't make sense.
They tried it with TB patients in Mammoth Cave early in the 20th century and it was fatal for many of the patients. They ended up taking the survivors to Arizona for sun exposure.
I used to have what you're talking about, getting very ill after being out in the sun. Limiting it because it makes you feel bad is just common sense, but now I feel better when I get a little sun every day. I do believe we need to listen to our bodies.
Also, I don't believe that it's just the anti-inflammatory properties of abx that makes them work. What I find is that when I get off abx for a few days, I actually feel better off them. If it were just the anti-inflammatory properties, I would think I would feel better on them.
I think different things work for different people, and not all LLMD's are the same, maybe it does work better for some people than what they're LLMD's have done.
Personally, my LLMD is very aggressive both with abx and with rebuilding the immune system naturally. For me this is working. I didn't do well when we cut back on abx too early .... and the one I was taking was mino.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I think I am really getting caught up in the "cure" aspect of the protocol. Although I am uncomfortable in a lot of ways in it being called a "cure", I also have talked to people who really feel that they are cured and have no trace of illness in their bodies through blood work and other tests.
I am just so desperate for a cure, for my life back. When I would be posting they would say "this is the only way to get your health back". I keep hearing those words in my head everyday and now I am scared that the MP WILL be the only way for me to get well.
I am so scared I will never feel what it feels like to be healthy again....I certainly do not remember the feeling. It scares the crap out of me.
I find that interesting about the TB patients. I guess the reaosn for not being able to go out in the sun is that the sun raises your 1,25D and 25D to levels that disrupt hormonal pathways making you feel very sick after being in the sun. It also increases inflammation in the body which is never good. This is what I get from all the reading I have done on the MP (since July 07).
It does make sense that VIT D is not good for you from not only MP publications but PubMed and other publications I have read. I dont give my daughter Milk w/ VITD...nope!
This is all so confusing, whats right and whats wrong? I just talk to so many people that are so healthy and well now from being on it and have never had such good health
It's SO confusing?????
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
I've always been curious about it, and even registered with the Marshall Protocol official site, and have read quite a few articles praising its benefits.
I asked my LLMD what his thoughts were, and he said: "with your low blood pressure, this would be the worst protocol for you, and I cannot in good conscience recommend it to you." I think the Benicar, one of the meds. of the protocol..lowers the blood pressure a bit more, and plus, when I did take Minocycline at one time, I was vomiting quite a bit. )-:
Soo.. I guess I won't be trying this protocol any time soon, but I still wonder if I may revisit thoughts of trying it in the future?
Posts: 26 | From Ma. | Registered: Jul 2006
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posted
I am also new to all the information on lyme protocols and treatment. I've been trying to read as much as possible to familiarize myself with what's out there.
I read through the Marshall Protocol several times and for me, it just did not pass the common sense test. I am very happy for all the people that are being helped on it and I hope that continues to be the case for them.
But there were so many things about the protocol that didn't make sense to me---especially the directive to keep Vit D levels below normal.
From all the latest studies that I have read, without sufficient vit D, bones can become thin, brittle or misshapen. Low levels of vit D can also cause stroke, osteoporosis, muscle weakening, muscle wasting, fatigue and birth defects.
Deficiencies of vit D can also cause heart disease, chronic pain , fibromyalgia, hypertension, arthritis, depression, inflammatory bowel disease, obesity, PMS, Crohn's disease, cancer, MS and other autoimmune diseases.
Vitamin D also plays an important part in modulating neuromuscular and immune function and to reduce inflammation.
Again, not being a doctor or scientist, I am just using my common sense when I consider how critical it is to have an adequated amount of Vitamin D in our bodies at any time in our lives, but especially when we are trying to fight off an illness such as lyme.
I guess I just don't buy Marshall's low Vitamin D mantra. I think it puts patients at risk for even more serious problems.
Also, how can one of his patients tell if their muscle pain, weakness, fatigue, etc are a result of lyme or low vitamin D?
I also have a big problem with his no sunlight order. That just can't be healthy. I am very sun-sensitive, but still find ways to get outside at least for a little while. (With my huge hat and sunglasses.)
I would be especially concerned about his patients with young children. He can't expect little kids to stay inside all day. That is just crazy.
I think Dr. Marshall has to realize that if one family member has lyme, basically the whole family is affected. He can't expect a young mother with a baby and an active preteen to be stuck inside all summer.
I know you're not ready to leave the house and hang out under an umbrella at the nearest pool just yet, but I hope you are soon.
But, when it comes down to making your decision, choose the one that feels right for you (and your family).
Posts: 345 | From East Coast | Registered: Apr 2008
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daise
Unregistered
posted
The MP has been rehashed and rehashed and rehashed. It's dangerous. Some of its proponents are fanatical: what are they selling? Control?
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Shandy, You might try to pm Byron or talk to him in chat, he is doing something that sounds really promising. I know it is in Kansas City and you have to go and stay there for a while.
Also I believe rife is something to look into. I have not done it myself, but have a friend who is doing well on it.
The doctors at the UNH conference all spoke highly of rifing.
I don't think you live too far from luvdogs, you might pm her or talk to her in chat. She just bought a rife machine, maybe you could work out a deal with her! She actually lives very near you.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Unexpected,
I have been looking into the MP for 1 1/2 years now. Couldn't start it myself due to family issues, then I went to an LLMD who I was told had people on it.
He had many folks on the protocol, but, for one reason or another, they quit, and now he only has three still doing it.
He uses propietary herbs then antibiotics, which is what I'm doing now, treating co-infections.
I still am holding out the option of doing the MP if my treatment objectives aren't met. Plus, like you, I find the science compelling.
That Vit D "deficiencies" occur when there are major problems with the body doesn't necessarily mean that lack of Vit D is the CAUSE of any of those conditions. Plus, the test for "deficiencies" is only the 25D, which is not the active metabolite that the body uses, so the body is not necessarily deficient at all.
Hypervitaminosis D is even talked about in the 1960s by Adelle Davis in her book, "Let's Get Well," which was one of the first compilations of scientific data on nutrition.
At any rate, I've decided to handle the co-infections (Babesia and Bartonella) first, then re-evaluate. And, I've stopped eating foods with Vit. D in them, and try to limit my light exposure.
That's my story, and I'm sticking to it! LOL!!
Hope this helps.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
I couldn't say whether MP is effective or not.
I can tell you that I take a LOW dose of Benicar and my blood pressure has dropped from 120/80 to 100/60 in about ten weeks.
The benicar does help with my chronic migraines, but i don't know if I'll be able to stick with it because of the BP.
I also take lower doses of abx, and some of them are pulsed, rather than high doses daily. I've only been doing it 11 weeks, so can't say if it's effective or not, sorry. Unlike you, Unexpected, i am able to tolerate 100 mg of mino every other day.
have you been checked to see if you detox properly??
I do take vitamin D.
Posts: 1173 | From USA | Registered: Nov 2007
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posted
Thanks So much everyone who has been writing in!! I appreciate all of your opinions.
Cass A- I am also in agreement about the D deficiancy as being a disease process and not a deficiancy. I know this to be true because when I first got my D's tested, my 25D was 15 and I just really started avoiding the sun and eating VIT D foods. So it is my disease process lowering my 25D and making my 1,25D high...although it tested at 29, I dont know if that was an error?
WHen I started Benicar though, I got what they called "herxing" from benicar, I felt HORRIBLE until I added 25mg of mino.
Daise- I am sorry about rehashing the MP again, I just am looking for advice from those who have been at this a lot longer than me . I know you dont really want to talk about it and I am NOT a cheerleader for the MP, just an inquiring mind. Why do you think it is dangerous? WHat about the people who are healed or are getting better due to it?
Again, just want your opinion if you would like to give it. I understand it may be dangerous but then I look at all the people it has helped. I know of a few that say they would be dead if it hadnt been for MP. I always wondered why I couldnt have the same results???
Tracy- I actually was talking to LuvDogs in chat earlier last night and she is very nice as well as her friend who I will be speaking with...Thanks !!
LymeToo- Thank you for your input, although I hate to disagree I may have to. I also have read into the VIT D thing pretty extensivlly and have found that it is not in fact a Vitamin.....I dont want to get into a heated debate here or anywhere though. I would like to stay friendly with everyone and I appreciate your opinion!!
Not So Sublyme- I agree, that was one thing I hated about being on the MP, was all the light restrictions. My kids were constantly in a darkened house and I couldnt take them out. ALthouh I am actually too sick to take them out anyway, it was like living in the dark and I felt terribly for my children. If that part could be altered in some way, I think I would be more apt to do it.
If I missed you, I am sorry. Overall I appreciate everyones comments. I have a few people to talk to, one being my doc who is not that keen on the MP, which is fine.
I will get this figured out yet!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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I've been on the MP now since October of 2006. When I started, I was cognitively and physically disabled. This morning, I am getting work done; later I'll go biking.
Everyone here raises some excellent points. I think the biggest part of the MP is also the toughest to rationalize and tease apart: the role of vitamin D in the body (intracellularly) and in the immune system. I am not going to dive into these aspects for myriad reasons, but Sixgoofykids raises what I think to be a really crucial point - the differences between D2 and D3. Let me say it another way: artificial or supplemental D may be really bad for some people. Especially people with underling inflammatory diseases!
Case in point for me: now that I am getting better, and avoid ALL ``fake'' D, my D levels are normalizing - while eating a healthy diet! I eat salmon and other foods that contain trace amounts of D.
The MP is not right for everyone, but it has helped hundreds of people get back on their feet. And I think the learnings we will eventually assimilate into patient treatments could be quite profound.
You may have searched this forum, but there are some good posts on this topic. Hope this helps.
-------------------- 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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We have actually talked on the phone when I first was starting the MP.
Thanks for writing in! I was on the MP for 5 months and HAD to stop. I was getting so very ill and nothing was working to get things tolerable for me for over 3 months. I could not get myself to 100mg mino without feeling deathly ill and having tachycardia of 130 all day and night for WEEKS on end.
I do find the science compelling and was so hopeful that the MP would work for me like it did so many others......I was told to hang in there and that I needed psychological help. I dont think there was any hanging in there the way I felt. My family was getting scared of my condition.
I am in a tough place. I am so sick, and want so badly for the MP to work for me like I know it has worked for many. I just dont know what happened in my case????
Thanks so much, and I am SO happy to hear how well you are!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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daise
Unregistered
posted
unexpected:
Near the top of this page click "Search."
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-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Alv
Unregistered
posted
UnexspectedIlls!
Me personaly have thought of MP.But dealing with all the inflamation and higher load that will not be a good option as for starting it right now.
Second .I came up with Vitamin D Deficiency .I hesitated to take it knowing the controversery and read materials that make me decide not to take it.
I used to stay for hrs in sun.But the last 9 years I started getting sicker and sicker when came back from the beach.So I decided to try through muscle testing if the VITAMIN D that my LLMD recomended would be OK for me.
That was a perscription.It came out that was a BIG NO NO.So No vitamin D for me.That makes me wonder "Am I a candidate for MP ?"
I want my life back desperatly and I would go through anything to get it back .Even if I have to sufer over and over just to get well.
TRY RIFE for now.It has helped me all these time to see which pathogen is active the most and now the load.
Also IRONICLY I had doubts when my LLMD gave me CEFDINIR - that makes the Spirochete to get to a L form.I was hesitating and just took 1/2 of dosage and waited to muscle test it .
When I did test for the Vitamin D and for CEFDINIR-came back that my body did not wanted any of them.
IS that a coincidence .On Bryans Book-he has all the antibiotics that create the L form.MAybe I have a high load of L forms.When I was reinfected in GERMANY -I was given AMOXICILLIN non stop and I got worst and worst.
Than when I got several times bactrim went to assymtomatic.HAd no clue that I had lyme.
But I have been avoiding all the antibiotics that turn the bacteria in L form.
So to speak ( sorry for the longing post) in my case that fits what they are saying.MAYBE I am a candidate for MP.My plan is when I have acchived the point that my load is lower and I need to be in maintanance , maybe I wil try MP!
What my body wants it is too MUCH of the COINCIDENCE with what some people are finding help.I would not ignore anything so far.
Maybe beeing opened mind made me survive and come so far.
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