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lyme and low vit. d levels


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I am confused about low vitamin d and lyme.

DS7 just dx PANDAS in Jan. DX from cd57 lyme also very low Vit d levels.

Awaiting more bloodwork, on amoxicillin, probiotic, small amount of zoloft 12.5 and llmd wants him on 5000ui of d3.

some sites I read that you should not give vit. d because it "feeds" the lyme?

Is it common for people with lyme to have low d and is it usually accepted practice to take d supplements or is there "truth" in the d "feeds the lyme?"

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I have heard that some say vit D can hinder lyme tx, but I have not seen any direct correlations shown regarding this. However, there are a ton of ref on the ill effects of low vit D levels. Just go to vit D council for refs. I know there is some controversy on this, but for the most part, I am seeing docs recommending vit D in their briefings. My whole fa,ily was under 20 (not good at all) and over the last few yrs we all got above 50. John L

 

 

I am confused about low vitamin d and lyme.

DS7 just dx PANDAS in Jan. DX from cd57 lyme also very low Vit d levels.

Awaiting more bloodwork, on amoxicillin, probiotic, small amount of zoloft 12.5 and llmd wants him on 5000ui of d3.

some sites I read that you should not give vit. d because it "feeds" the lyme?

Is it common for people with lyme to have low d and is it usually accepted practice to take d supplements or is there "truth" in the d "feeds the lyme?"

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There are two schools of thought, one is not to feed the Lyme and the other is that the body needs it to heal. The same goes for Magnesium. In our case I waited about six months of straight antibiotics before doing any supplements, and Vitamin D had a huge amazing impact. I can't say if waiting was the right approach but I have been very happy using Vitamin D3, has helped DD's mood improve dramatically. Now I only give it every other day. 5,000 iu seems awfully high to me. Personally I would start lower and work up maybe to 1,000 iu. I started at 400 MCG. My DD is 9/65 pounds and I give 1,000 iu every other day. She started I think with a level maybe around 30 and at last test it was I think at 50. If I give it every day now she gets anxious.

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Thanks, my DS is 60 pounds. His level was 18

We go back to see the llmd on the 7th so I will talk to him about it.

I thought that 5000 was very high dose to put him on, but what I have read and spoke to the store about said that was o.k.

He "looks" healthier, and ocd symptoms seem less on abx and d, however still too early to tell.

He had more bloodwork today.

Thanks for the input

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i can't answer so much about the feeding of lyme . . . but my ds is also low on d. long ago, i tried supplementing him and always thought i saw an uptick of symtpoms -- it was 2000 ius i was trying with him.

 

this past summer, we added a new doc and he tested d -- it was 20.5. we were adding some other supps, so i wanted to keep d out of it b/c of past trouble. over christmas break, we began adding 200iu. ds seemed to have reaction when we reached 600iu. symptoms abated when we went back down to 400iu. everyone finds this strange, esp b/c these are pretty low levels to be supp. and for only 200 ius to make a difference. but, the reaction and abatement were obvious and we had no real other variable.

 

just tested again, only ~7or 8 weeks of supp (did b/c was time for others, not so much only for d) still low at 20.8.

i'm not sure i'm going to be willing to put him up again until summer break b/c school is going well and i don't want to screw with that. i think doc is not going to like levels - he suggests supp of 1000/day.

 

did you see the post on pandas board about supping with vit k when supp d? i may try that rather than adding more d.

 

5000 sounds very high to me -- perhaps you could discuss with doc a plan of moving up to that gradually and/or watch carefully for reactions -- ?? i think most think there should be no reaction to vit d, but i fully believe in it and there are posts on the pandas board from others who have seen it as well --please let me know what info you get from doc. thanks.

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My DS always had worse symptoms when supplementing D3 or multivitamins so I quit giving them. When he started lyme treatment our LLMD said 5000 iu (because he tested so low). I was worried, but he did really well on this dose while taking antibiotics. My guess is that without the antibiotics the D3 was feeding something (lyme, coinfection, ??), but while the infection was being beaten down by the antibiotics his body was able to use the D3. Just my theory.

 

Edit to add - We tested D levels every couple of months and after 12 months of supplementing 5000 iu he was only in the mid-normal range. Also if you are going to supplement a fat-soluble vitamin in mega doses your doc should be monitoring blood levels periodically.

Edited by momcap
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It seems high but I can tell you, my doc upped my vit D from 1000iu to 5000 iu and 4 months later, it has not budged. Mine is in the 50's. I have rheumatoid arthritis and my doc wants it in the 60's at a minimum, so I am to continue 5000iu and twice a week take 10000 iu's. Now, I am an adult but 5000 iu's would not worry me. DS takes 2000ius a day and has for several yrs.

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My son's LLMD put him on 3000 iu's when he was 10 and I think around 60 lbs. His vit D level was 24 before that. Now at age 12, 80lbs, he is on 5000 iu's b/c his level is still only in the 30s. The LLMD told me his levels need to get up between 60-70 for him to successfully fight off these infections. Our son's integrative pediatrician agrees with this strategy and was the one who upped the dose a few months ago.

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Thanks for the replies. We go back to see the llmd on the 8th. I have noticed last few days that he is very active. He is starting to feel like he "needs to touch the over", confess, saying "sorry" 100 times a day.....so after 2 1/2 weeks on the antibiotic and VIT d supplements , symptoms are creeping back up, this is after seeing a bit of an decrease in symptoms. I have read that this can be "Herx" affect? He actually looks healthier, brighter eyes, skin tone does not have that "grey" sickly look. He has made it to school the last week without tears and meltdowns!

Still too early to tell.

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