luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
The Marshall Protocol requires you to be a vampire and avoid all sources of vitamin D including the sun and supplements.
I'm not following the Marshall Protocol but after having a great week of very minor pain, I went riding on my horse on Sunday and was in the sun probably an hour max. Monday I could barely walk and I'm just wondering if it was the sun. My pain has been more pronounced all week. While I am usually a little sore the day after riding, it has never been this bad nor lasted more than a day.
Never mind for the moment that horseback riding is an extremely physical sport and could, on its own, set off my rheumatism. Obviously, I don't want that to be the reason, so I'm ruling out everything else first.
I'm not currently supplementing any vitamin D. How can I test to see if I have sufficient, too much, too little vitamin D?
What is your thoughts on the whole vitamin D connection?
Thanks for your responses. Where else but Lymenet can so many people be seeking our opinions? :-)
-------------------- 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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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Luvs..I am not very knowledgeable about the Marshall Protocol..
But my daughter has had osteoporosis and now seems to have an obvious curvature forming in her back..She is not very compliant about anything and at 19, I am unable to force many issues.
Her new primary care physician is trying to work on all of this and had a Vit D test taken..So I know it is possible to check this..My daughters level was very low so we are trying to supplement as she will permit.Hope this helps..
Posts: 2360 | From SE PA | Registered: Mar 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Luvs2 .....
I was originally dx'd with Sarcoidosis. I actually found the Marshall Protocol Board before I discovered Lymenet. I was thinking of trying the MP. Had my D's checked.
Then, a friend suggested I might have Lyme. After reading about Lyme it sounded more like what was happening to me. And you know the rest of that story......
At that point, I was trying to "live in a cave" and avoid Vit. D. I can't honestly say if it worked or not. I didn't do it long enough (about a month)and I had not started ABX. Also, the sun never bothered me.
Well, after I started treating the Lyme I also discovered Dr. Mercola (mercola.com). He feels current suggested levels of D are way to low. My D levels were always what I thought were ok and even the ratio that MP suggests was with in range.
My alt doc (not LLMD) sggested I take D. I have been supplementing D for over a year. I am still not sensitive to the sun and I am sloooooooooowly improving.
I am not sayig the MP doesn't work. I just don't think it applies in all situations, even if the dx is sarcoidosis(which the MP was developed for).
I still may try it (or some variation) one day. One of my docs said a few patients ended up in the ER from the high dose Benicar.
What I have learned from having lyme is that, in fact "there is more than one way to skin a cat".
(where did that awful saying come from? and why did I use it?)
Ok, now that my speech is over I will answer your question. You can have your D-levels checked at LabCorp or Quest. The MP folks don't like LabCorp because they don't freeze the blood. If you are going to get your D's checked according to the MP, I would go to there board and find the test and lab they suggest. That way it is done right.
Ride On!
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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I am on MP (modified version) and I avoided all Vit D for about 6 months (which is no easy task because it shows up in lots of places!). My D levels, and D 1,25 levels were very very high, and when re-tested after 6 months, they had come down. Down so much that my LLMD decided it was TOO low. There is a great deal we don't know about the role of Vit D and intracellular infections like lyme. We don't know if high levels of D 1,25 is causative of disease, or caused BY disease (body's response to fighting an intracellular TH1 infection). I too feel lousy after being in the sun all day, so I can't claim to be sure about the issue. Just sharing my own personal experience with MP and Vit D. I am supplementing D now, and don't notice feeling worse or flairing of any symptoms.
Just my opinion. Not medical advice. Good luck.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
D is an extremely important vitamin ESPECIALLY to avoid getting osteoporosis. I'm doing so much better than I was and have been taking vitamin D consistently.
January 2004 I was diagnosed with osteoporosis after breaking my shoudler. I took Lupron for endometriosis which likely caused osteoporosis. My doc wanted me to take Fossamax for osteoporosis which I refused to do. My alternative and LLMD both recommended D as being more important than calcium and said I should take vitamin D.
18 months later I have a second bone density and discover I no longer have osteoporosis and have osteopenia just on the hip and a 10% increase in bone density. My opinion is not to omit D.
Posts: 738 | From Colorado | Registered: Oct 2004
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posted
overall, seems more so the stress on tendons, ligaments,muscles, other kinds of connective tissue due to the physical rigor of horse back riding, etc., than something due to vit. D.
if on certain abx, and meds., then these, perhaps also their respective metabolite(s)-- the latter of which could be in your syst. for days, weeks after stopping them---when in the skin, and the skin is exposed to the sunlight would react in the skin causing a photo________? reaction.
check your signs and symptoms against whats in the medical lyme literature.
check with the yahoo cfids, subgroup whose primary focus is vit. D, and its cofactors, the cfsprotocol group. typing on-the-fly,i forget the exact url.
there is a cfids subgroup on mp failures. they should offer some insight, as well.
Posts: 2708 | Registered: Feb 2005
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I'm currently on a break from the MP but plan on returning. I was on spring break last week with family and after a couple hours of sunshine my feet starting inflaming and I could tell I needed to get out of the sun.
The rest of the break I wore longs sleeves and hat with wide brim and I did just fine. Many say they feel better when out of the sun but as you can read everyone seems to be different.
Try the MP sunglasses and cover up when you go outside for a week and see if it makes a difference.
Jar
Posts: 805 | From Utopia | Registered: Feb 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Anyone who is sensitive to warm temps should consider that they *may* have orthostatic hypotension. Just wanted to mention that this *could* be one reason why a person would feel bad after being in the sun. Terry I'm not a medical professional
[ 21. March 2006, 02:27 PM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
The key finding for me came when I tried supplementing with 1000 IU vitamin D3 daily. I'd feel better the first a day or two, then worse than I did before starting the D. I stopped the supplement, stabilized my symptoms, then retried and had the same result.
Turns out this matches what the MP predicts. My increased intake of D3 let my body produce more 25D and that provided more fuel for the bacteria, which worked to convert it to 1,25D.
If you have a typical vitamin D test, it's probably only of the 25D. One reason 25D can be low is if bacteria are consuming it by converting to 1,25D; if you start to supplement with D3, you're only adding more fuel to the bacterial fire, and your infection can get worse.
A blood test should include both the 25D and 1,25D. My 25D was low, but my 1,25D sky high.
AFAIK, there are only three known causes for high 1,25D: direct supplementation with 1,25D (calcitriol), lymphoma, and infection with the Lyme/Sarcoidosis family of bacteria.
Posts: 727 | From USA | Registered: Mar 2006
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posted
We just unfortunately do not know enough about Vit D, or 1alpha25(OH)2D3 (or D 1,25, the secosteroid form of D) to be able to say for certain what its effect on disease is. It is fairly well established in medical literature that Vit D supplementation lowers risk of some cancers, and Vit D has some immunomodulatory function. It is not at all clear what this function is, and in fact some recent research suggests that D 1,25 produced by macrophages (immune system cells) may provide a negative feedback mechanism to control inflammatory processes of the activated macrophages.
In other words, it isn't really clear from the medical literature whether high levels of Vit D 1,25 is a good or bad thing. I certainly don't know. Just weighing in with what I have found, for what it is worth.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
I too had sun sensitivity last summer (I live in the midwest). I had some really sick days back then, but I had some really GREAT days too. My sense back then was that the sun was raising my body temperature, which was killing off lots of bugs. I posted elsewhere that in the old days, one of the healing cures for TB patients was to stick them out in the sun and "bake out" the bacteria. The higher the bacteria load, the stronger the reaction to the sun.
As I'm not a biochemist, I profess no expertise in the Marshall protocol debate. I just know that I follow my intuition (which has always been right) and do what feels best for me. What feels best for me is to be in the sun. What do the animals do? They typically seek out the sun, they don't lie in the dark. I've also read on other web sites that if one is deficient in vitamin D, one can herx as the levels are raised, since the immune system is now getting stronger and killing off more bugs.
Posts: 50 | Registered: Jun 2005
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posted
i suggest that some tbd-infected athletes render an opinion,athletes, former and current, and with a background in at least 2-3 sports, where most of the muscle groups come into play.
Posts: 2708 | Registered: Feb 2005
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posted
i have been seeing an osteopath and he ran an metobolic (i think that is how it is spelled) panel and my vitamin D level was dangerously low. along with lyme,fibro,cfs i have osteoporosis and oseopeonie in both hips. he said i could take all the calcium i wanted and if i did not have vitamin D supply in my system the calcium i was taking was not doing anything. i am currently taking 50,000 units 2 X a week and starting to feel a little better. he said i will have more energy and feel less achy when the deficinacy raises. all i can do is hope. i will try anything at this point! sick of being tired. hope this helps someone out Posts: 7 | From Vermont | Registered: Feb 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Thanks for all your responses!
I love the sun and have been suffering this winter with the lowered body temp that comes with Lyme, so I have been eagerly waiting for warmer weather. I sure didn't want to have to think I had to start avoiding the sun.
I'm not sure why this week was tougher than most. Probably just the cyclical thing.
Thanks again!
-------------------- 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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posted
here is a page relating connective type tissues(cartilage, tendons, etc.) and enzymes, called metaloproteinases, borrelia cause to be 'set-off' to digest(weaken) these structures. Tendons connect muscle to bone, for example.
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