This is topic 2nd Negative ELISA/Hypothroid/Vitamin D Deficient? Question? in forum Medical Questions at LymeNet Flash.


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Posted by joysie (Member # 11063) on :
 
I posted last week in this forum about many symptoms that I have been having over the past few months. Thanks to all who have very kindly PM'd me with LLMD referrals.

I got labs back today-my second ELISA was negative. I am hyptohyroid, and also significantly Vitamin D deficient. The neuro says I do not have Lyme.

I am going to start calling the LLMDs tomorrow morning. Thyroid and D deficiency don't explain to me why I have sweats, burning feet, muscle twitches,ear and jaw pain, tingly teeth, creepy-crawly feelings all over, and the confusion- of of which that comes and goes in cycles.

Does anyone have experience with the hypothyroid/D deficiency and Lyme?
Any thoughts?

Thank you all again.
Kris
 
Posted by janet thomas (Member # 7122) on :
 
i had 2 negative elisas but my western blot was pos. Lyme often impacts the thyroid. This time of year many of us are low on vit d-your skin makes it when exposed to sunlight. If the neuro would not order a western blot just move on to a more knowledgeable dr.
 
Posted by janet thomas (Member # 7122) on :
 
Oops, double post.
 
Posted by WildCondor (Member # 434) on :
 
A negative ELISA means nothing as far as Lyme disease, that test is horrible. Neurologists are not Lyme literate doctors and they cannot diagnose Lyme, or tell you that you do not have it. You must consult with a Lyme Literate Medical Doctor (LLMD) that follows ILADS treatment guidelines!
 
Posted by Michelle M (Member # 7200) on :
 
Hi Joysie. There's prolly more people on here with negative ELISA's than you would believe! Thus giving weight to the argument that it's a worthless test. Mine was negative, though my western blot was WAY positive.

Neurologists should be stopped from giving people "medical advice" about lyme disease.

Alternatively -- given their usual snide level of certainty -- when they're proven wrong they ought to simply pay for our LLMD's.

To amuse yourself, you should do a search for the classic thread, "Are all neurologists goofy?"

Your mileage may vary.

But it's doubtful.

Lyme toasted my thyroid also. Pretty easily rectified. Also very common.

Good luck!

Michelle
 
Posted by Cobweb (Member # 10053) on :
 
Hey Joysie-I'm from Maryland,too.

Anyway-I just got results from an endocrinologist, whose expression seemed to glass over whenever I mentioned I had Lyme Disease(fortunately with positive testing by LLMD)which showed that my hypothyroidism is worse-she upped my synthroid, and I was significantly deficient in Vitamin D, so I was given a script to take 50000 IU of Vitamin D 2 x week for eight weeks .

that's not a misprint-50000 IU.

So I was about to post a new topic on what people know about Lyme and Vitamin D difficiency.
Thanks for getting the ball rolling on the subject-but I have more questions than answers.

Carol
 
Posted by Lisianthus (Member # 6631) on :
 
Has he tested you for Babesia? Oh wait they don't bother testing for that either cause it don't exsist either! Excuse my sarcasium, but just makes me nuts when ducks open there uninformed mouths!


Go to a LLMD.
 
Posted by joysie (Member # 11063) on :
 
I have a prescription for 50,000 1x per week plus 1,000 over the counter daily . I have started the over/counter + 25 mcg synthroid. I want to say I feel no different, bu it's only been two weeks.
I can just see the glazed eyes.
I read alot here and in the Marshall protocol literature about Vit D being contra-indicated, but I am going to give it a shot. Are you?
this is all so jolly and confusing
Kris
 
Posted by Cobweb (Member # 10053) on :
 
I'm going to wait until I see LLMD on MOnday March 5th. But probably -yes I am going to give it a try.
 
Posted by TerryK (Member # 8552) on :
 
I couldn't tolerate the 50,000 IU dose. It made me lose a lot of fluid (I have massive fluid retention) which then made me short of breath. Also affected my sleep and made me feel wired. I have been taking Vit D for several years. I finally had to move my dose up to 4,000 just to get to the low end of normal on my blood tests.

I did have some interesting changes as a result of Vit D supplementation. I had not had body hair growth since I got really sick and I started having a small amount of growth again. That has pretty much stopped again since I've been on treatment for lyme.

Do a search for Vitamin D in the subject line here for many discussions.

Here is one interesting thread:
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042141#000000

I supposedly don't have a thyroid problem but I do have all the symptoms and out of 6 of us with lyme symptoms - 3 have hashimoto's thyroiditis. I do think that an infection with lyme and co's exploits any genetic weakness so it seems that lyme can affect just about anything. [Frown]
Terry
 


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