I have been reading about vitamin D a lot lately, since my LLMD has done a 180 on me concerning D. When I first went to him 2 years ago, he told me not to worry about it (the D).
Now almost 2 years later, my D which made it all the way up to 63, dropped back down to 23 while I was taking 1000 IUs a day.
My doc acted very concerned about this and is now giving me 50,000 IUs 2x a week. He now says vitamin D plays a vital role in many chronic illnesses. He talked as though he has made some new discovery concerning it and so I am giving it a go once again. Not sure what to make of his change of mind, as D being so vitally important now, when 2 years ago it wasn't even a concern.
I was hesitant to go this route again as I did the mega D before I knew I had LD, and I did feel better when it went above 100; but was taken off due to regular docs feeling it had gone too high. Once it went back down I then felt worse again. I was not on antibiotics at the time however. Maybe there is a need to use them together???
I read that Vit D is a "seco" steroid, don't understand the science there; but also there are many articles now that say vit D "improves" the immune system rather than suppressing it.
I also read a while back where a few other LLMDs are now putting their patients on these mega doses of D. Was something said about this at the ILADS conference last year? Just wondering if I am missing something.
Its scary, but then again we as lymies do scary things everyday to try and recover. I just wish I knew which one it is.....an immune inhancer or suppressor. Or maybe it comes down to the 2 facets of lyme...one being that lyme puts our immune system into over drive and therefore the D might then act as an immune stabilizer.
I am not a scientist, that is why I am trying to get some more science minded opinions on this.
SG
Posted by canefan17 (Member # 22149) on :
suthern,
To begin with... Vitamin D isn't a vitamin. The body produces Vitamin D in the kidneys.
So if you have kidney issues that can explain vitamin D levels fluctuating up and down.
Vit D in high amounts does act as an immuno suppressant.
Remember that vitamin D has 2 metabolites 1,25D and 25D
Get both tested.
Dr S recommends Vit D and fels that it's very important. He alsoo said that spending 10-30 minutes in the sun 4-5 days a week can get you more than 10,000IU's/day!!
Don't do this if you are on doxycycline.
Posted by sutherngrl (Member # 16270) on :
Yes Canefan, the way I understand it is vit D is actually a hormone.
I just wonder if old research is saying it suppresses the immune system and new research is saying the opposite. Or maybe we need a certain amount of immune suppression with LD to recover???
My confusion comes from my past experience with mega D and with my LLMDs latest change of mind concerning vitamin D.
Can't do sun, I am on Doxy!
Posted by canefan17 (Member # 22149) on :
I don't worry too much about Vit D.
Continue to treat Lym and Co and the rest should take care of itself.
Supplementing with Vit D just sounds like another component you're adding to the, already busy, game.
When you're off doxy get out in the sun a little more. But mega dosing Vit D? ehhhh
Posted by sutherngrl (Member # 16270) on :
Sorry Canefan, thanks for your input; but I am after more of the science behind the hormone D and its effects as an immune inhancer and how it works to improve chronic illness.
Read what LymeMD says on his blog about vitamin D. He retracted from an earlier blog, and now thinks D is very important in recovering from LD. Several other LLMDs also seem to have discovered its atributes as related to chronic illness.
Posted by gemofnj (Member # 15551) on :
suthern,
i too have heard alot of positive information regarding D, cancer and unexplained illnesses such as auto immune disorders. it seems that vitamin D is becoming quite popular these days.
Everything you should know about Vit D and why it's a judgement call.
bryan Rosner even makes an appearance lol
Posted by sutherngrl (Member # 16270) on :
I guess I will be my own study. I took mega D when I was ill but not yet had a lyme diagnosis and when my level of D reached 129 I was very close to a remission. (thinking it was a Fibromyalgia remission). I felt the best I have felt in 4 years of illness.
Now I am doing mega D again, prescibed by my LLMD; however now I am on antibiotics, so maybe the outcome will be full remission.
It is possible that D either slows down the immune response, which may be in over drive, and then that allows the antibiotics to do their job. Or maybe it is the opposite and it improves the immune response, which then along with treatment is able to irradicate the bacteria. It has to be one of the other.
Either way, all lyme treatment is still trial and error.
Like what is said above.....its a judgement call!
Posted by canefan17 (Member # 22149) on :
suthern,
I would get both metabolites tested 1,25D and 25D
If your 1,25D is high I'm not sure you want to mega dose Vit D.
Again, jmo
Posted by sutherngrl (Member # 16270) on :
According to LymeMD the body should balance that out on its own. That was in a more recent of his blogs on vit D.
My doc is a long time researcher of LD, so I am trusting that he knows what he is doing.
Posted by *twinkle* (Member # 24427) on :
Hi SG! (it's me EricaC)
I found this great site and article and thought you'd really like learning more (I did):
Good luck with taking this! My Mom has taken prescription Calcitriol for years now and it makes me want to try it!!
Posted by *twinkle* (Member # 24427) on :
What is the name of your prescription SG? I'm reading more on the link I posted and it's great!! It looks like Calcitriol is NOT the best choice. Hmmmm....there's always so much to learn! I think vit d is of HUGE importance!
Posted by sutherngrl (Member # 16270) on :
Thanks twinkle! I am interested in reading all I can about D.
I looked on the bottle but it just says vitamin D 50,000IUs. I take it 2x a week.
I took this a few years ago before I knew I had LD and I actually was almost in remission. My doctors had me stop it because they said my D had reached toxic levels; but I found out lately that it is an incorrect reading, unless you are off the D for at least a week before taking blood. So what appeared to be toxic probably really wasn't.
I might be repeating myself! Sorry! I didn't re-read what I already wrote.
Posted by Cass A (Member # 11134) on :
Taking large doses of Vit D really got my Lyme going!!
I had to stop it entirely.
I personally wouldn't put too much faith in what the "Vitamin D Council" has to say, as their job is to PR (promote to increase belief and sales) Vit. D.
Best.
Cass A
Posted by sutherngrl (Member # 16270) on :
Cass, I am fortunate to have a LLMD that is all about research and healing and does not push any product for the sake of making money. His decision on vitamin D definetly comes from the time he has put into researching it.
By saying it got your lyme going.....are you saying it made you herx? Not sure what you mean?
In the past mega D actually had me almost in remission. It made me feel amazingly better after just a few months.
Hope I have the same results this time!
Posted by gemofnj (Member # 15551) on :
i have corrected the link in my earlier post. i am so sorry about that.
also there are many variations of the vitamin d testing, and often regular MD's dont give you the correct one.
its worth a little research if your are considering getting tested. you can also get a home kit too, but if your MD can prescribe your test, it would be covered by insurance.