Lyme Disease Support Group

The naturalpath that I go see doesn't believe that I have lyme disease and is treating me for some other condition. She has me on vitamin b12 shots and vitamin d prescription vitamins.

I would like to hear of anyone that has been told to take vitamin d and what there experiences have been. For me, it increases the pain in my arms and elsewhere. I dont know if that is a good thing or not. Does anyone that goes to see the clinic in N. Atlanta been presribed vitamin d?

Paul

I had very low b. My LLMD has me on a prescription vitamin B supplement. I take a multi vitamin once a day and also extra Vit. D and calcium. They are very good for you bones and joints and since Lyme attacks those areas of your body you can't go wrong. Have you ever had a Lyme test. What are your symptoms, what makes you feel that you have Lyme. If you feel its Lyme you need to get a second opinion. Don't wait any longer to get treatment as it will only get worse.

Good Luck.

Post edited by: krissy, at: 08/24/2008 22:15

Vitamin D is a very compex and controversial issue. Most docs check vit D OH 25 which is the major circulating form. It turns out that this form is relatively inactive. Many/most Lyme patients have high levels of active vitamin D 1,25. Vitamin D is actually not a vitamin. It acts as a hormone which has an active effect on the immune system. This is the basis of the Marshall protocol which I do not endorse. Vitamin D can suppress the immune response to killing germs inside cells by inactivating something called the Th1 helper T cell response. Bottom line: check both forms of vitamin D. I usually restrict it. Benicar is given to balance vitamin D. I am sure this to technical already. Do your own research. Good luck.

My LLMD has me on 50,000 mg of vit.D once a week. My number was really low at 17. I have found it has helped a ton with my aches and pains. Although I keep asking WHY isn't my body absorbing the D. I have 2 little kids and am outside in the sun all day long so it is an absorption problem. Unfortunately, no one can tell me why. Is it a common problem amongst us all?????

AMY

"Some people who have Lyme have low vitamin D levels." That was written on one of the forums for symptoms of lyme disease. I had a low vitamin b12, low dhea. Those that are not familiar with lyme will discount your symptoms as not being lyme related.

Paul

Post edited by: paulrt, at: 08/24/2008 17:22

try google search for Bell's Palsey of the gut associated with tick born diseases. It can cause symptoms reminesent of celiac sprue which could cause the malabsorbtion of vitamins/nutriants.My son had health probs for 2 yrs after tick bite. he followed glutenfree diet a while,took lots of fish oil at night for his vit d because it was low, finally found a LLD & had a western blot done (we went to numerous docs & er,etc for 2yrs & could not get him any help) the western blot showed something (the dr didn't tell us what....wish I knew) and put him on doxycyline for 2months...slowly he got back on gluten...so far so good...he did haveupper & lower scope & blood test that showed no signs of celiac but his symptoms (feeling bad, bad digestive problems,weight loss,etc....then a bad case of pancreitius (at age 17)slowly improved.anyway,if you are having any digestive issues you may want to research this. He had low vit d low cortisol...etc. it did a domino effect on his body and it all started 2 weeks after a tick bite.

I just found out yesterday that I have super low levels of vitamin d (9) and my doc is putting me on a prescription for it. I was trying to wein off the antibiotics but all of my lyme symptoms have returned....Back on full time starting tomorrow. I'm so sick of this disease. I've been on drugs for over a year now. But just wanted to let you know from everything I've read online tonight....low vitamin d is indeed a symptom of lyme.

Actually Fionne, low Vitamin D is an indicator that you are fighting an infection of any kind; it doesn't have to be Lyme.

Now, if you have Lyme symptoms or been diagnosed with Lyme, then yes; it is another marker to look at.

But the question is, what Vitamin D is low? Is it your active Vitamin D, or the inactive Vitamin D? It makes a difference.

If you are low on active Vitamin D, then you can have muscle aches and weakness, and weak, painful bones. If your active Vitamin D is low, then your body is not synthesizing enough through the liver and kidneys, and there can be a problem in that area.

If you are low on inactive Vitamin D (the kind you get through diet and exposure to sunlight), then that can indicate your body is making active Vitamin D faster than you can absorb it (fighting an infection will do this), so supplementation is justified in that case.

Just some FYI.

Tom

I have late/misdianosed lyme- a regular cbc count showed everything normal but when my infectious disease/lyme doc ran the 25 and 1.25 they were extremly low as well as my carnitine levels, so I need a scrript for vit d and carnitor being the carnitine is not suffient to my deficiancy- I was told my my llmd it is common in his lyme patients- most likely with many autoimune- what blew me away was the diag of POTS and thombosis and another vascular issue- which explains why I can't stand for long without leaning and have told a bazillion doctors this and they all said nothing - they all applauded my low blood pressures when i said this is too low- I have a very accurate machine at home which I always sinc up with the doctors office and it holdp ressures in memory- my lyme doc found a murmor and I have been saying that for years- theres something not right but because I had 90/60 bp's for years it was always a big yeah from all the idiotic docs i went to. Dead from the inside out... I dealt with years of my son with hypertension from age 14 so I know enough about blood pressures

Low level vitamin D is a symptom of SOMETHING. And from a recent study I read, that SOMETHING is what needs to be treated. Vitamin D supplements for a deficiency is becoming more controversial for some reason or another. Even though this flies in the face of what we think will help.