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Oh no...second lyme test is negative?

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Posted 10/11/2012 1:42 PM (GMT -5)
Ok, I want to cry. Just got the call from the rheumatologit's office with the "good" news. They said I don't have Lyme, the second test was negative.

I asked for a copy of the test results, but it took him a week to respond to my message about chest pains, so I can only imagine how long I'll have to wait for this.

My financial situation does not allow me to pay out of pocket for an LLMD right now. Not to mention the closest one is 4 hours away. My husband works long days and nights, so he can't be of much help. The poor guy works his butt off because I can't. It's like a vicious cycle that we can't get out of until I get better. I need treatment desperately. My plan was to get temporary disability, but that one is shot now too.

No diagnosis, no disability. No treatment.

I'm devastated and I don't know what to do next.
Posted 10/11/2012 2:25 PM (GMT -5)
Start an herbal protocol that you can do at home. In the 'New to Lyme' thread it lists several doctors with herbal protocols. After doing a little research, I like Dr. B's protocol because his is scientifically driven and he lists what to take on his website without having to order the book. I ordered the book first, but then realized after the fact that I didn't even need to. Many people use herbs to get rid of Lyme and all it's co-infections. If I was in your situation, I'd do it just to get started until you feel a little better physically and can think straight. He even lists symptoms and what you should take for which symptom. Just a thought. Hope it helps!
Posted 10/11/2012 2:26 PM (GMT -5)
P.S. DONT FORGET---DETOX, DETOX, DETOX!!!
Posted 10/11/2012 3:00 PM (GMT -5)
Hang in there Rori!! That test result may be positive if read by someone who understands how to read one! I realize that you need a doc behind you to get your disability. Here are some links to help with getting disability:

If that test was truly negative, don't panic about that either. Depending on exactly what the infection is doing at the time of the test -if it's not active in your blood stream - you may be able to get a positive on the next test. Many LLMD's suggest 6 - 8 weeks of abx before testing to help the body mount that immune system reaction the tests are looking for.

Of course, I do have to agree with Shabbychic though also - especially since I'm using a natural protocol as well.They do work quite well, but I'm not here to try to convince you or anyone else to use them. I'm only here to help!

Here's a link that will take you to "Lyme Info" that has quite a few links to follow to help you figure out what's next:
www.lymeinfo.net/insurance.html

I do hope that the answers become very clear to you soon!
Posted 10/11/2012 5:39 PM (GMT -5)
If the SECOND test was negative, was the first positive? Because how would they explain that? Keep working with your neurologist and the health system to rule out everything else, but but don't rule out Lyme (and Lyme can be treated, so don't totally freak out about it either). If you are tight on money, I honestly wouldn't bother with further testing. My ND did one test, and when it was negative just started me on treatment, and used my response to treatment to determine I did have Lyme.

Herbal protocols can be really helfpful. Even if you can just afford 1 appointment with an ND (Naturopathic Doctor), it might be enough to get a treatment plan, and then you just have to buy the herbs/supplements.

Oh- and if you can get a diagnosis in the regular system, you might want to consider taking it. I am positive I have Lyme, but I am letting my new (non Lyme-literate) MD investigate chronic fatigue, because a diagnosis of chronic fatigue would help me get benefits and disability coverage.
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