lululymemom
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posted
Many of us are familiar with the Marshall protocol regarding Vitamin D being an immune suppressant..
My question is after hearing on another forum that most chronic Lyme patients who recover don't supplement Vitamin D, can anyone on here, who has recovered or nearly recovered, comment on their use of Vitamin D or D3.
posted
I bought a Mercola tanning bed at some point in my treatment and used both it and vitamin D3 supps regularly after that. I don't remember how far into treatment it was, but I was still sick when I bought it.
Now I am well.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Bugg
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I think it's profoundly important to the health of chronic lyme patients...
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lululymemom
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posted
thanks, six, I would be curious to know the benefits of the tanning bed.. not sure I would be using it due to a bout with skin cancer but am curious if it has benefits...
bugg,so you don't believe that it suppresses the immune system? or is this a good thing when the immune system is going into overdrive?
posted
The Marshall protocol is under serious review and many ILADS physicians do not believe it to be a viable and scientific method of treatment based on the lack of even clinical improvement compared to other ILADS treatment protocols.
To put it succinctly, Lyme is capable of putting your Vitamin D levels completely out of balance and ALL patients should be evaluated with Vitamin D 1,25 and 25-Hydroxy (Two separate tests). Your physician will interpret these results and prescribe accordingly. There are many patients that are seriously deficient
Emerging research has shown that even those without chronic illness benefit from at least 2000 IU of D3 a day, as with very, very few exceptions many of us don't get the kind of outdoor exposure for which our bodies evolved to process/activate D from sunlight. 2000 IU of D3 is a safe baseline for a light skinned person with an indoor job, living in a temperate latitude. Those with darker skin have an even more difficult time getting the D they need and can scale it up a bit. I would not exceed 3000-5000IU daily without proper testing for deficiencies or more likely in the case of Lyme patients, imbalance.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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canefan17
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posted
sun + cod liver oil
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t9im
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posted
lulu:
D3 is critical for immune system support. When one becomes deficient one becomes more ill and I assume this will contribute to fatigue and other of the lyme symptoms.
Probably the best is to do research of Dr. Hollich at the Vitamin D clinic at Boston University.
The 2 LLMD's we are seeing for my daughter indicte the hydroxy level should be in the 60 to 80 range.
Its not the amount of supplement you take but your actual level in the blood as everyone is different.
Since your in Canada I'd say the odds of a normal (non Lyme) person being deficient in the winter are high. Lyme just makes it worse.
I supplemnet 5,000 units a day of d3 jel. We now have my daughter at 2,000 units (liquid).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Every patient is different. Some patients respond well to D in my case supplementing with D just made me take more naps. I had elevated d 1.25 so that explained my reaction. Just going on a cruise or a few days at the beach would wipe me out also.
Posts: 805 | From Utopia | Registered: Feb 2006
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A question about the Mercola tanning bed. Is that safe to use when on ABX like Doxy that make you sun sensitive?
Posts: 186 | From colorado | Registered: Jul 2010
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Lulu, here's the site for the tanning beds. It talks about the benefits. I don't use it excessively, only about 5 min two or three times per week, so I'm not one of those people who look tan all winter. It seems to be enough. http://tanningbeds.mercola.com/tanning-beds/standup-tanning-systems.aspx
I also take some D3.
Last March my D level was at 54, so I did pretty well through the winter.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lululymemom
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posted
Thanks, Blackstone, for explaining more about the vitamin deficiency and the current status of the Marshall protocol.. I am light skinned and probably should get my levels checked.. I always thought a CBC panel would show, but I see it may not.
t9im, so it is supporting the immune system..I will have to read more on that. thank you..
I try to avoid the sun mostly because it really doesn't make me feel well. I get headaches and extremely tired when I have been out in direct sunlight for more than 20 minutes..
So the vitamin D theory that the Marshall protocol explains seemed to make sense but I am now hearing about people who really got sick using that protocol.
Six, it's really interesting what they say about that tanning bed. I never thought they would ever come up with a bed that can actually produce Vit. D.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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MichaelTampa
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posted
I'm somewhat better, not completely better. I use energy testing, and have taken "vitamin" D, which is a hormone by the way, off and on, based on energy testing.
I think with all hormones, it is important to be pretty careful to determine if your body really is helped by it right then. In lyme, if the story goes that the D can help the lyme and be used against you, all the more reason to be careful.
I have sometimes had changes in whether I energy test for D seem to coincide roughly with going on or off treatments. And it may just be coincidence, but it also may be another clue to how important it is to either take it or not take it.
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lululymemom
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Exactly right, Michael, that is why there is some confusion surrounding this.
I don't want to be constantly checking my vitamin D levels in order to be sure if I have to take it or not. Although, it seems that is really what needs to be done.
It is my understanding that D can work against you and help the lyme. Is this an old theory or does it still have some validity?
posted
It's my understanding that the Marshall protocol, though some tried it for Lyme, was really developed for a different disease.
What I like about tanning vs supps is that with tanning your body makes what it needs. I am very fair skinned, so need little time in front of the lights.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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'Kete-tracker
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I recovered. I never used Vit D supplements (typ. D-3).
That said, I watched a fairly recently taped show on "brain health" on PBS last night. The doctor (a PhD, an M.D. & something else) does indeed stand by the fact that most adults in the U.S. today are deficient in Vitamin D (due to several factors, such as less working outside).
He recommends having yourself tested via a certain method (I can't remember what) & to supplement if it's low. He also suggests getting out in the sun more... However, this is the worst time of the year for that. :-/~
My local Nat'l Foodstore has a sale on D-3 going right now. I picked up on a bottle. We'll see!
BTW, I saw a recent TV news announcement (last week) saying some report just came out that concludes that supplementing with D-3 for most is at the least "not needed" & in-effectual, & at the worst, "dangerous" as it increases likelyhood of this or that.
Yeah... Great! Now we can add D-3 supplementation to the list of products (that includes coffee, of course) where we're alternately told it's a good thing... & then it's a bad thing, every few months.
Personally, I'd rather believe a highly educated professional in the business of health care.
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lululymemom
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So you are one that didn't need the Vitamin D to recover. Even though most in the US and Canada are deficient it's still not routinely perscribed by doctors.
There must be a reason for this. I tried the D3 and couldn't sleep due to palps.. Not sure if that was the cause or if switching to Magnesium Oxide from Citrate was doing it.
Either way, I am still sitting on the fence about this one. My brother who has read the studies told me not to take it.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Bugg
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posted
Vitamin D is what keeps me going, literally....For me, it helps modulate my immune system and quell the inflammation in my body like nothing else has....it absolutely makes a dramatic difference in my pain levels...
I also find that if I take it with calcium (make sure I get at least 1,000-1200 mg a day) that it helps to calm alot of the muscles/twitching...
It makes the difference in me having stamina in my legs/being able to cook dinner/clean house/workout...etc....and not being able to do any of those things...
Just fyi, it DID NOT make me feel good when I first started supplementing with it (made me achey, feet cramping, very sleepy)....However, I worked through that and it has made a HUGE difference in my life...
Just fyi, I treated with oral and IV abx and HBOT for over 3 years.....I didn't try the Vitamin D until after this....Of course I still take magnesium as well..
Good luck and good health with whatever you decide...Just please remember that if your Vitamin D levels are not adequate, your body cannot properly absorb calcium.....calcium is so vital to proper nerve and muscle and bone function....
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Vitamin D3 has been one of the best supps I've taken. I noticed a dramatic difference in the "lead suit" feeling I used to have. I started at 1000 IU daily and slowly worked up to 5000 IU where I now remain and stay.
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Brussels
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posted
I supplemented, and I got well. I'm now willing to reach my 2 year remission mark! I do think that magnesium and Vit D are important for lyme.
I would also add iron for the babesia sufferers.
As for sun sensitivity, infections can do that. Heal the infection and you can take as much sun as you took before. It happened twice to me, specially with babesiosis. I got infected twice with babesiosis, and during the two times I got sun intolerance. Sunlight made me even throw up. I felt horrible with sunlight.
I knew the problem was not the sun, it was me and my infections. Once the infectious treatments started working, so my sun sensitivity got better fast. Babesia in my case was the culprit.
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lululymemom
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Bugg: Thanks for that information, I never realized that Vitamin D could make such an improvement. Maybe it will help with the pain and CFS..
rks: I have the D3 on hand and have been waiting for a good reason to take it. Once I have the bloodwork done, I will most likely start.
Brussells: That's great that you have achieved remission, congratulations! The concensus seems to be that Vitamin D is important for recovery.
I've also wondered about babesia, I have never tested for it. I know exactly how you felt in the sun, it's my symptom as well.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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gwb
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posted
quote:Originally posted by rks: Vitamin D3 has been one of the best supps I've taken. I noticed a dramatic difference in the "lead suit" feeling I used to have. I started at 1000 IU daily and slowly worked up to 5000 IU where I now remain and stay.
I agree. D3 for me had really made a big difference in how I feel. Not only that, it's helped my IBS. Don't ask me how or why, but if you google IBS+D supplement and you'll be surprised what you learn about it.
posted
When they tested my D last year and found it very low I started supplementing. When my levels came up, it made more of a difference than any supplement I've ever taken.
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sutherngrl
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Vitamin D for me is in the same category as a great medication. It has really helped me more than any supplement.
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CherylSue
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I think it has helped me, and I'm doing 95% and work full time.
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posted
It's also supposed to protect us from cancer, diabetes and heart disease. (and the flu!)
lulu.. get tested for babesia!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymie_in_md
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Read up on vitamin k2, d3 might be useless without it. I had a better post as to exactly why, but the link wasn't acceptable and pushed me back. I lost all that was written. I know I should have saved it prior to replying, I didn't.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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lululymemom
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lymetoo, as soon as I can afford it, I will get tested for babesia.. I just never felt I had the symptoms other than the tachycardia..
gary, if it helps IBS, that would be huge for me..
thanks, bob, I don't really know much about k2 but will look into it..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Cass A
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I personally would get wiped out when in the sun for a while. Sunbathing was torture! Immediate need for a very long nap!!!!!
In fact, Lyme really took hold after I'd been taking high doses of Vit D on the advice of a knowledgeable friend--that was in 2004. (I got the bull's eye rash in 1998, and started developing some symptoms at that time. However, I did have a tick bite in the 1950s....)
When I had my D-25 and D-1,25 tested, the D-25 was low, but the D-1,25 was high in a toxic range!!! This happened with two tests several months apart!
I cut out any Vit. D supplements and foods high in Vit. D or supplemented with Vit. D, and this has helped me some.
I've investigated the MP, and would do it, except with Lyme the effects of being on the program are usually too horrible to be borne. My LLMD, Dr. W.A., was an early adopter of the MP, but by the time I went to him in 2008, he had only 2 patients still on it, and mainly used antibiotics.
Personally, I wouldn't supplement with Vit. D until I had BOTH the D-25 and D-1,25 tests done. Your first clue would be your reaction to sunlight (if any).
Best,
Cass A
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Cass A
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posted
Oh--as for Diabetes and Heart Disease, an insulin control diet, such as the Zone diet (Book--Enter the Zone by Dr. Barry Sears) is MUCH MUCH more workable and vital than any other thing you could possibly do.
Best,
Cass A
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littlebit27
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posted
I take my Vit D 3 everyday (when I don't forget). My Vit D was at 13 the last time it was tested. And that was during the summer when I was working outside and at the beach every-every other weekend....so....I needed some Vit D.
I haven't really noticed any difference, but I haven't been paying attention as well as I should. I keep forgetting to write in my symptom journal. I have been forgetting my Vit D the last couple of days and I've been really tired...connection?
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Bugg
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posted
For what it's worth, I didn't really start experimenting with using Vitamin D until AFTER I had finished all abx treatment....
As for my "sun" experience, I, too, initially got VERY SLEEPY after being in the sun.... A physician friend of mine told me that was a common reaction in people who suffer with inflammatory diseases such as RA etc because the high doses of Vitamin D quell the inflammation, hence acting as a powerful and immediate relaxant due to the high dose.....
I completely respect others' opinions regarding avoiding the sun but thought it might be helpful to others to share my experience with it...
As for testing for 25-D vs 1,25-OHD, I think the following abstract from the Endocrinology Journal is helpful:
lymie_in_md
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posted
If you read the tamaro protocol it talks of not only using k2 with D3 (also need vitamin E and vitamin A ( the best form of vitamin -- eat sardines) but also using bicarbonates as a way to alkalize the body. If you just supplement D3 you may be missing the other building blocks to make it useful. Bugg it sounds like you have many of the building blocks, for those who don't where sunlight just makes things worse, some of these building blocks might be missing.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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lululymemom
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Bob, can you give me an example of a bicarbonate? Do you mean something like baking soda?
I tried to sneak in the D3 with my supplements the other day and again, felt very ill from it. Not sure why...
I take a good multivitamin that has all those vitamins you're talking about, except the k2. I will have to read more about that one.
posted
Some lyme patients are already over-alkaline from the ammonia due to the Lyme Disease. Be careful about bicarbonate. I have to take HCL for digestion because I'm already overly-alkaline.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lululymemom
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Do the alkaline test strips, show if you are acidic or alkaline?
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