Miserable but lyme test negative?

My daughter had severe TMJ all of a sudden. Sent to neurologist for migraines. They done lyme test. It was negative, but her b12 and d3 were low. She's lost 20 lbs. could it be just TMJ? Because the thing bothering her now is bad stomach ache and throat problems. She won't play and stays sad for the last 6 weeks. Her legs were cold one day and I took her temp. It was 96.5. Her blood pressure is 90/50. The thing is we live on a farm and we get bitten by ticks often. This one bite her and I showed my husband the blood rash it left. But it was only 4 week after when she got the test. Is that to soon to find a positive result? Plus she was having kidney problems and was on antibiotics. She has Downs and is 22 so her tolerance to lyme would seem to work on her faster I would think? Any help is greatly appreciated. Really would love to get her out of this pain and back to her joyful self again.

Okay thanks. I will go get a copy tomorrow. :)

Yeah I'm gonna have to get her retested. She had her first violent outburst and attack yesterday. She has always been so sweet and shy. I can't even get her to smack at her brother if he aggravates her. But she was over it in about 30 minutes like nothing happened. Her test just said lyme ab/western blot reflex lyme igG/IgM Ab <0.91
Lyme disease Ab, Quant, IgM <0.91
Which means within normal

If she had a Western Blot done, you should see bands that are IgG and IgM positive, IgG and IgM bands that are negative and possibly some that are IND (Indeterminate). The other tests are of very little help as they produce false negatives about 70% of the time. Even the Western Blot relies on the immune response which is compromised with Lyme and with Bartonella.

And if this was through Quest Diagnostics, they are known for returning false negatives as their lab techs don't have any training in how to read these tests, and they don't use the right medium for testing.

Don't give up!! If you want to test again, don't waste any money on the regular labs - use Igenex or Stony Brook Labs, as they have trained their techs properly and use the proper medium for these tests.

Now this still doesn' t address the fact that the Western Blot (even from Igenex and Stony Brook) only tests about 4 or 5 of the over 300 possible strains of Lyme disease, as well as other issues with the current tests.

The most accurate tests are ones that test for the DNA of the bacteria. - PCR tests and I believe the 'Dot Blot'.

Okay thanks a lot! She is having chest pain and I found red blood spots on the inside of her cheeks and lips. She is just having 2 or 3 new symptoms daily now. She is totally wore out. :(

How is your daughter doing today? May I ask what dose the Doxycycline is? We would like to help make sure that she is taking enough to help.

Please be sure that she is eating something just before taking the Doxy to help protect her stomach. The high doses that are required to treat these infections can have a very harsh affect on the stomach for some.

If she seems to be worse, then it is likely from the toxins that the dying bacteria put out - she'll need to detox more. I know that this may be tricky for you to get her to do, but maybe some alternative means will work? Some examples are that I'm aware of that are used by Lyme patients: zeolite - which you can get as drops

Dr. Jernigan developed some 'antitox' formulas that many have found helpful:hansacenter.com/product-category/supplements/ He developed 3 different ones, choose the one that seems to fit her symptoms the best or choose the "Basic Antitox".

If you can get her to drink green smoothies, then you can flavor them with fruit (I liked blackberries the best) and include detoxing herbs like cilantro and parsley.

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Since things are so different for those who have Downs, just how far out of character is that behavior? If it's way out of character, I would suggest calling her LLMD. It could be a reaction or caused by a reaction to the Doxy, or it could be some symptoms from the infections possibly.

I wish I understood about Downs more so I could be of more help. Maybe someone else on the forum will respond soon.