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Lyme Disease Message Board

Lyme Disease Board Index

Hi Jim,

Welcome to the board. :wave: Sorry you have to be here.

Yes, what you are describing most certainly sounds like Lyme disease. And unfortuantely, the reaction of your doctors was very typical. Many, many doctors still need to become educated about tick borne diseases, but in the meantime they misdiagnose and/or undertreat or fail to treat at all.

Some interesting facts about Lyme:

There is NO test which can absolutely rule out Lyme. The most frequently performed test, the ELISA, misses over 60% of cases. The more accurate test, the Western Blot, is still not completely reliable and is generally only given if you have a positive ELISA. Which makes no sense at all but there you have it. So in other words a negative test does NOT always mean that you don't have Lyme. For this reason, the CDC states that Lyme is supposed to be a clinical diagnosis with the test used to help confirm.

Some reasons why a test can come back negative in a Lyme infected patient:

1. The sample was taken too soon after infection for your immune system to have mounted a defense.

2. You are producing a detectable level of antibodies, but the lab made an error.

3. You are producing antibodies to a strain of Borrelia burgdorfiri (Lyme) that the lab cannot detect (for the record, there are over 200 strains in the US alone)

4. You are producing antibodies, but they are bound to they Lyme bacteria (called a complexed antibody) without enough free-floating antibodies in the bloodsteam to be detectable.

5. Your immune system is compromised and not responding properly.

6. By taking antibiotics early in the disease, the immune response may have been aborted.

7. The bacterium has changed its makeup and the immune system hasn't noticed it.

8. The bacterium is cloaking itself inside an immune system cell thereby escaping detection.

9. You have a genetic predisposition to produce a negative test, as shown by Drs. Wang and Hilton in their 2001 publication.

In the largest Lyme disease trial ever conducted (for the Lyme disease vaccine trial for Lymerix) which included 10,000 participants, it was found that 36% of the volunteers with proven Lyme disease (culture or DNA positive) [I]never[/I] developed a positive Western Blot.

More than 50% of Lyme patients never develop the bullseye rash (called an erythema migrans) and many never even recall a tick bite. Also, the erythema migrans often take on a different shape or form than the "bullseye" and could easily be mistaken for a bruise, ringworm, spot, etc. An erythema migrans, regardless of its form or shape, is a definite indicator of Lyme disease. Unfortunately, many doctors are not trained to identify them.

Ticks carry several other co-infections in addition to Lyme disease. Many people with Lyme are also infected with one or more co-infections. These include Babesiosis, Erlichiosis (there are two types), mycoplasma, bartonella, and more. It is important to be tested and treated for co-infections.

Again, many physicians are not sufficiently knowledgeable about these diseases and many infectious disease doctors are not much better. I mentioned to my dermatologist that I had Lyme and Babesisosis and he says "oh Babesiosis, that's really rare". It is absolutely NOT rare, it is positively rampant in certain parts of the country.

200 mgs. of doxy per day is not enough. It is not sufficient for Lyme and if you are co-infected it will not treat that. Many doctors are not knowlegeable and undertreat or treat with outdated protocols.

It is possible to have Lyme in the body for some time. If you have had repeated tick bites it is entirely possible that you contracted it at an earlier time. Hopefully it never happens again, but if you should ever find a tick on yourself again it is a good idea to save it and send it to a lab for testing.

Your best bet is to be evaluated and treated by a Lyme literate medical doctor. If there is a Lyme support group in your area they can be wonderful sources of support, referrals, and other resources. If you tell us what area you live in, someone here can probably help you locate a competent doctor. I had to travel out of state to get proper treatment. I went misdiagnosed for a long time and am now finally receiving the right treatment and am really improving. Hang in there, the answers and good treatment are available if you persist.

There is an excellent and informative book, 'Everything You Need To Know About Lyme Disease and Other Tick-Borne Diseases' by Karen Vanderhoof-Forschner. I have found it to be an invaluable resource.

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