-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's not about being "for" or "against" vitamin D. Vitamin D is FABULOUS. But only in the amount we need. Either too much or too little and some very serious stuff goes kaput with many body functions.
It's not about being "for" or "against" as that is like being for or against air or water. It's about what your body needs.
Get your vitamin D levels checked FIRST. MP is for those with high vitamin D levels.
MP does not address everything about lyme or coinfections. MP has worked (to some degree) for some and not for others. It is certainly not to be entered into lightly.
I studied MP in detail years ago. I did a test run with Benicar while I was waiting for my vitamin D tests to come back and I had a terrible reaction to it. I was thrilled that my levels were fine. I simply was not even a candidate for MP. Yippee !!
A few LLMDs use Benicar sometimes to help lower inflammation but, for me, curcumin works just fine to do that.
There are many past threads on the MP, "Marshall Protocol" and also about "Benicar" as part of the MP or independently.
You can search each of those terms in the subject line here:
Also find the website for "Townsend Letter for Doctors" - search their archives for May, 2007, an article by J.C. Waterhouse. She wrote a series that appeared over several months.
You would never even want to think of starting this without first reading every word she's ever written about this. She had a positive result but she approached it very methodically and with great care. I do not know if she had lyme, though. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
thanks guys. I just read more about it on lymemds blog, so i understand it a bit more
my levels were low, so thats why im on the supplement but i should get my tests back tomorrow or next week so i will know if I am already at normal levels.
Posts: 319 | From nj | Registered: Jul 2008
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posted
For what it's worth my LLMD goes by the Marshall Protocol and I have been seeing some improvement on it. Eariler in the treament we tried benicar...I didnt feel like it was helping so we dropped it.
As for the Vit D...I didnt realize it didnt meash with the MP... As we had my Vit D levels checked and I was way low so my LLMD has me taking Vit D daily.
Good luck,
Karen (:
Posts: 423 | From Virginia | Registered: Nov 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
For the newbies, Benicar is a prescription medication that reduces inflammation. It is used to reduce high blood pressure.
In the Marshall Protocol, the patient is prescribed Benicar and low dose minocycline.
Apparently in some people, there is a problem with Vitamin D formation, and the protocol reduces your exposure to sunlight and D to the extreme.
There was a big discussion about this shortly after I joined here, and that's when I began to realize how important it was to reduce inflammation in the body.
I have been having good results using systemic enzymes.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I've been told that the Marshall protocol is like a perma-herx.
:0
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
The Marshall Protocol was invented by Trevor Marshall Phd.
My LLMD basically follows the MP and my brain is fried and I am tired but it looks as if some are saying the MP does not think you should supplement with vit d???
All I know is my LLMD has my bloodwork checked regularly and with my vit d vit d1.25 low he has me taking 5000 mg a day although I must confess with all the other supplements abx, proabotics etc I often can't find time to fit it in ):
do you take it with food, with out food, with abx, hr before hr after ....just so darn confusing
Posts: 423 | From Virginia | Registered: Nov 2009
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Personally, I had a friend who was (and still is) a BIG promoter of Vit. D in very large doses! He believes it's God's gift to fix just about everything, and passes on any promotional release from the Vitamin D Council (which is funded by the Vit D industry--no surprise there!!) like it was transmitted directly from the Divine!
I tried high doses of Vit D before I knew I had Lyme, and turned on tinnitus that is still with me, 6 years later.
After I read about the Marshall Protocol and got tested, I found that my 25D test was LOW, but my 1,25D test (the one for the active metabolite of "Vit" D) was in the TOXIC range!!!!
I haven't ever started the Marshall Protocol, but I did do some of the recommendations: I stopped eating anything with Vit D added, stopped eating eggs and other foods high in Vit D, use the special NoIR sunglasses when I'm out, use a very high (SPF 70) sunblock, and usually don't go out during the most sunny hours of the day.
These have helped me.
I did take Mepron/Zith for almost a year due to Babesia. This was from a Dr. who recommends and supervises the MP for some patients.
I'm currently taking the Allergie-Immun drops, and doing just about every detox method possible, working to handle the CAUSE of getting Lyme and staying chronically ill from it.
Having just read Dr. J's book, "Beating Lyme Disease (Issue II)," and trying some of his ideas out with success, I'm looking at doing more of his protocol, once I'm complete with the Allergie-Immun handling. At that point, I think it would go very, very quickly.
However, the possibility of actually DOING the Marshall Protocol has not left my mind. Since Marshall states that a healthy person would have no "herx" reaction to Benicar, taking it under the MP conditions would act as a "test" that the physical situation is fully resolved....or not.
At any rate, in my opinion from my own experience, "Vitamin" D is a) not a vitamin, as by definition a vitamin is something that the body needs that it doesn't produce itself and b) its "deficiency" is not the ROOT CAUSE of whatever problem it may seem to "solve," and c) it can definitely cause harmful effects which may show up quickly or not.
Perhaps, as some claim, it suppresses symptoms while allowing the bacteria, etc., to move in wherever they want, resulting in global conditions that are very, very serious. Probably for some people, "vitamin" D is very helpful.
For these reasons, I recommend caution in supplementing with it.
Hope this helps!
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Karen Mc,
From what I have read about the Marshall Protocol, he would NEVER recommend supplementing with Vitamin D.
You could check out the MP websites: CureMyTH1, AutoimmunityResearch, and/or Bacteriality.com
The CureMyTH1 site moderators used to answer questions posed by interested people.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
Marshall Protocol would only suggest you adding some D if your Vita D 1.25 got extremely low after being on the protocol for a long period They would never say to take it if just the regular vit D level is low. The 1.25 taken by a lab that freezes it reflects if your body really needs D.
Cass you should use a sunscreen with zinc oxide if you really want to avoid sunlight exposure. Pm me if you want the best one.
Posts: 805 | From Utopia | Registered: Feb 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I also recall that the MP would not allow ANY supplements, especially herbal ones. I've not studied it in a couple years (since I decided not to do it) so they may have changed (though, I doubt it) but a few years ago they were extremely firm on this point:
No changes with additions or leaving something out at all or it would not be the MP - while some Rx/dosage might vary from person to person, the structure of the MP itself must be followed exactly to be called the MP. Either is is or isn't the MP - no variations.
And this is understandable. Although some elements might be of help outside of the MP, but then it's just not to be called the MP. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler you have to understand the MP was dealing with thousands of people with different diseases on a internet site so they were saying just do it this one way.
The Dr. I use to work with on the MP and had several hundred patients on it with cfs/fm/lyme would address the individual needs of her patients. She went from bedridden back to a full time medical practice due to the MP but as an M.D. she addressed other issues that her patients had that in no way kept the MP from not working.
I eventually quit working with her due to distance. But still do some of the other things she suggested when needed. But yes the basics of avoiding sunlight, taking benicar and proper abx combos etc must be done or it can't be considered the mp.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
Sorry for the confusion, But I think that is what my LLMD does..He basically goes by MP but also looks at each of us on a individual need basic.
It was in fact my Vit 1.25 that is low. and since he has been treating me since April 2009..almost a year I guess he felt like I needed to get my Vit d 1.25 up. He wants me to take 5000 units a day...but I have 2,000 unit pills so I have actually been taking 6,000 (when I remember to take it--its kinda hit or miss) but from what I seem to be reading 5,000 isnt a mega dose anyway??
Thanks all,
Karen (:
Posts: 423 | From Virginia | Registered: Nov 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- jarjar & karen,
agreed that a knowledgeable MD can take the MP to better heights and individualize it. I also agree that, with so many people doing who knows what else, that the MP had to say: stick to specifics or don't call it MP - as many would just do what ever they wanted and still call it MP when it really was not.
I was not criticizing just stating that Marshall had strict ideas for what could be considered the protocol, and quite understandably so. I did think it should have been more open to individualization as I know even had my vitamin D been low and had I been a candidate, I would have needed certain key supplements.
But, just as there is no LLMD in my state, there was clearly no doctor in my state experienced with MP so I was not aware that the protocol could, indeed, be modified for an individual's need. I'm glad to hear that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler just out of curiosity do you remember what your vit D and 1.25 levels were after sending them to quest? Vita D 1.25 levels often swing back and forth.
Karen I wouldn't supplement very long with D. If you notice you stop herxing then thats a sure sign to stop.JMO
Posts: 805 | From Utopia | Registered: Feb 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I don't recall but in the "okay" zone.
However, Quest had a period of time when their Vitamin D tests were in error - that time period is not in this article but one could find it with a little searching. They offered free new tests to anyone who was affected:
Quest Vitamin D error could affect thousands of patients Laboratory Compliance Insider, April 1, 2009
An internal investigation found that in some cases, lab staff members were improperly preparing a reagent, which caused the test results to have an upward bias, says Richard E. Reitz, MD, medical director and chair of the Endocrine Division at Quest Diagnostics. In addition, there were instances in which laboratory staff members failed to strictly adhere to testing protocols, Reitz says. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keeb the reason I asked was that my first 1.25 test was considered not that high either and the staff on the MP gave a reason for it not being really high. I preceeded with the protocol and about 6 months later got my test taken and it jumped considerably to a not so good level. As mentioned above 1.25 does swing considerably at times. All in all I don't recommend the MP to people unless they really notice they feel worse after a lot of sun exposure like me. I started trying it when I was diagnosed with CFS and was blown away by all the herxing. Later I got a Lyme diagnosis and went to see a respected llmd and he suggested I do his protocol. I worked his protocol for about 9 months and just started going downhill with old symptoms such as air hunger, pain in feet and taking naps everyday returning. So my thought was to finish what I started with the MP. Actually felt I was going into recovery last year right before I had bought a new house and had to move. So back out in the sun making lots of moving trips into a home not that darkened took its toll. Hopefully I will regain that recovery feeling again soon.
Posts: 805 | From Utopia | Registered: Feb 2006
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