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Lyme Disease
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Posted 4/4/2016 3:55 PM (GMT 0)
Hello,
A few months back (December) I began getting awful chest pains that lasted four days and pain in my arm. Within the same week, the pain in my right arm moved to the other (left) side where it has stayed. In addition, there is some pain in the leg on the left side as well. Around 2 weeks later, I noticed a sensitivity to light began. I wouldn't say I have blurry vision, but something clearly changed. My doctor ordered a Brain MRI (w and w/o contrast) which came back the same day, clean.

Later in January, about a month after this started, I started feeling some numbness/tingling in my fingers on my right hand (opposite side of the arm and leg pain). Then some tingling under my left eye. Many things have come on quickly and I am genuinely concerned. The numbness isn't always there, but then it comes back, it freaks me out. My doctor put MS in my head, but I did come in contact with what I believe were ticks in November. But I was tested using an ELISA test in January, and that came back negative...

I have a neurology appt in May, but I need some guidance here. I have had a neurological test for balance, gait, reflexes, ect by my PC, and that looked normal. What else could it be?
Posted 4/4/2016 4:15 PM (GMT 0)
I too had an Elisa test that came back negative and after going to a lyme literate medical doctor and was tested by Igenex, I tested positive for lyme.

I also had to have a brain scan and was scheduled for MRIs and was sent to a neurologist. All of these were negative. And all of these just wanted more appointments and more tests -- $$$$$

If you suspect you got bitten by a tick you really should go to a LLMD and be evaluated. Lyme is not taught significantly in medical school and many doctors learn about it after medical school (stated by Dr C.).

I know you are searching for answers and I hope we can be of help.

Please read the first thread at the top of the list entitled New To Lyme .... Start Here!

It has a list of symptoms and a ton of other information that may be of benefit to you.

So sorry you suspect lyme. Please ask questions and we will be glad to help you.

If you would like help in finding a lyme literate medical doctor (LLMD), start a new post with the title being "Looking for LLMD near _________" We will then either email you or post places to look. We don't put doctors names in our posts in order to protect their practices. We also do not post our email addresses. This forum is easily seen by many on the internet and we do not want a lot of spam.
Posted 4/4/2016 5:09 PM (GMT 0)
Would a neuro be a good person to talk to? I am going to one in a month. LLMDs generally don't take insurance and I don't have a lot of cash that I can just spend away.
Posted 4/4/2016 5:36 PM (GMT 0)
No it wouldn't. All those issues can and are caused by neuro Lyme. Save your money until you see a quality Lyme doc.
Posted 4/4/2016 6:18 PM (GMT 0)
I agree with jrpsf. My neurologist was horrible that my GP sent me to. He wanted to do a lot of very expensive tests and wanted me to keep coming back for appointments. I told him I had a headache and said "could it be lyme?" He said "you don't get a headache with lyme."

On the list of symptoms a headache is always on there. He was wrong. He didn't know what the lyme symptoms were.
Posted 4/4/2016 9:45 PM (GMT 0)
What test was used to diagnose you? Is there a home version? I am just trying to save where I can. LLMDs here want $425 per appt and I would need to come in for 3 appointments (initial, tests, follow up). That's $1275, and if I find out that isn't what it is...that's a lot to spend for a negative diag.
Posted 4/4/2016 9:55 PM (GMT 0)
Igenex will send you a test kit. You do need a dr to sign the lab request. Will your primary care doc sign it? If you have a dr that will sign it the best test to get is the Western Blot for $210.

Typically a first appt is more expensive at an LLMD office than follow ups. $425 for a 1st isn't low. Follow ups should be $225-$275
Posted 4/4/2016 10:42 PM (GMT 0)
Another way to see if you are dealing with these infections is to trial one or two of the herbs most commonly used to treat them.

If you have an increase in symptoms (aka a herx)....or start to feel better, you'll know you're infected with at least one of these infections.
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