Do I have Lyme disease?

Question

I have been sick for two moths now and I do not know what is wrong. I have been tested for lyme disease twice but they both came back negative. My symptoms mimic most symptoms of lyme disease. They found spots on my brain, I have trouble sleeping,pain in my muscles and joints, headaches, dizziness, and tingling in my leg and arm. The Dr. has tested me for MS and arthritis. But found nothing!

I am trying to figure out where to go from here.

Answer 1

The tests for Lyme disease are really unreliable. It's important to be treated by someone who really understands Lyme disease. Alas, not too many of those around. Suggest you go to www.lymenet.org, click on "flash discussions" and then on "seeking a doctor" for recommendations in your area.

Good sources of info about Lyme disease:

http://www.lymedisease.org

http://www.canlyme.com

http://www.lymenet.org

http://www.lymeinfo.net

http://www.lymediseaseassociation.org

http://www.ilads.org

http://www.betterhealthguy.com

http://www.publichealthalert.com

Answer 2

All of those symptoms are related to lyme disease.  Once you have been tested for it and it showed up negative twice, then you probably don't have it.  Maybe you should get another opinion from a different doctor.  

Answer 3

Your symptoms can be a result of Lymes Disease. The organism is certainly gone, but the immune response is what can cause chronic arthritis in people. Approximately 10% of people who experience arthritis as part of Lymes Disease will end up with a long-term, chronic arthritis. The arthritis is most commonly found in the knees.In addition, there are a *lot* of things that can cause swollen joints and, if you have no clue why they're swollen, you should see a doctor. Swollen joints with no apparent cause are usually immunologic in nature (lupus or, less likely at your age, rheumatoid arthritis) or infectious (gonorrhea can cause this). But then it could be the Lymes"

Answer 4

Have they tried running a test of antibiotics on you? When I had Lyme disease, the antibiotics kicked in really fast. But if you've got spots on the brain, then I think you must have a more advanced case than I did.

Try researching the internet, and see what they recommend for advanced cases of Lyme. You can't do the antibiotics unless you have a doctor's co-operation, but you can follow the dietary and rest requirements.

Keep trying doctors -- many people report having to go through a lot of tests before the answers are found.  

Answer 5

Danjo,

I must remind you, as SO many people continually forget or deny this simple truth...  Lyme disease is a CLINICAL diagnosis, based on a lot of factors (including exposure to ticks).

Testing "normal" on a Lyme titre means N-O-T-H-I-N-G.

Approximately one HALF of people with Lyme will be negative using the "popular" Lyme panel; the "ELISA" test.  This is a well-known FACT within the Lyme-treating medical community. It's just that many doctors still want to rely on this "test", as if it's...   accurate or something.   Did the lab ever run the Western Blots?  (These make up the 2nd part of the test which the labs often don't run if the titre is <1, unless asked by the doctor. GOOD labs- like IgeneX in Palo Alto, CA- ALWAYS run the blots.)

Some patients are diagnosed Lyme-+, even by CDC standards, once their IgG & IgM blot results are analyzed... even though their titre was < 1 !!

It's important you find a doc who is familiar with the disease, prefferably one who is affiliated with ILADS  (see  ilads.org).

I'm not saying you DO have Lyme... just that it can NEVER be ruled out because of a "negative Lyme test".

As far as he "spots" on the brain... I'm assuming a CAT-scan? This must be checked into and explained satisfactorily.  It could be nothing, or... (?)

Answer 6

If the Lymes titers came back normal - TWICE - you don't have Lymes.  You need to see a Rheumatologist or an auto-immune specialist.  Go to a larger city to a big metropolitan hospital.  It could be Lupus or some other autoimmune disease.  Also a neurologist would help too - a good one.