Matthew Goss's Lyme Disease Information

Introduction

How I got it

Types of Ticks that Carry Disease

Definitions and Terminology

Symptoms and Tests

Drugs

Herxheimer Reactions

Vitamins, Nutritional Supplements, and Herbs

Bacteria and Yeast

Diet

Costs of Treatment

Is There a Cure?

Is it Sexually Transmitted?

Links

Printable Flyer

Tests
Those questions aren't as easy to answer as you might think. The tests for these diseases are not very accurate, so even a negative test does not rule out the possibility that you have them. For instance, there are at least 12 strains of Babesia, and tests are only available for two of them, so a negative test for Babesia really means nothing. The best test labs are Igenex and Bowen.

If you decide to be tested by Igenex, you should request tests 183, 188, 189, 200, and 203 initally. This will test you for Lyme Borrelia by both Western Blot and ELISA as well as Babesia and Ehrlichia. Current costs for these tests as of October 2002 will total $367 for all 5 tests if you pay up front--Igenex will not bill your insurance company.

To request these tests, print out this form at the Igenex web site and take it to your doctor (you can use your family doctor for this, but don't let them use their lab, make sure they use Igenex--it's your money and you are paying for a service) and request that he or she draw the blood, spin it, store and ship it according to Igenex's instructions.

If you have any questions about this you can call Igenex at the 800 number listed on their website. You can also call them ahead of time and have a test kit mailed out to you to take with you to your doctor's office.

You will see references to IgM and IgG in regards to these tests. These are types of antibodies that the tests will recognize in your blood serum. IgM measures initial immune response while IgG measures a later stage response.

[Note: Medicare may not presently pay for the Igenex tests, but may pay for similar tests done by MDL.]

The tests do not test for the bacteria themselves, only your immune response to them. So if you have Lyme and your immune system is weak due to other factors, your body may produce few or no antibodies, and thus test negative. Your body may also stop producing antibodies if you have taken antibiotics. Also, if you have just been bitten by a tick your body will not have had time to produce any antibodies.

If you have been tested, even if you are told your test is negative, ask to see the results and ask which bands, if any, showed up on the test. Your doctor will likely tell you that you tested negative even if your test shows that you have Lyme. The reason is that old CDC reporting guidelines state that you must have 5 bands to be positive. However, even one Lyme-specific band can prove you have Lyme.

If you want to know how to interpret these tests and what the different bands are, click here. I would also suggest you check here for additional information. For questions on what specific bands mean, the above two links often provide links to studies on them.

The short answer is that bands 14, 21, 22, 25, 28, 31, 34, 35, 37, 39, 47, 50, 83, 93 and 94 are specific to the Lyme spirochete, Borrelia burgdorferi (Bb). The presence of bands 42 to 45 may indicate an Ehrlichia infection, click here for reference on this. There are other bands that may indicate a Bb infection, but because they could also be caused by other diseases they cannot be used as a screening tool, unless taken in context with other Bb specific bands.

If someone tells you that you need at least 3 or 5 of these bands to have Lyme, ask them why you would have any of these Lyme-specific bands if you had never had Lyme in your system. The 3-to-5 band criteria are based on outdated CDC guidelines, but many doctors who are not educated about the disease still use those outdated standards to make a diagnosis.

False positives come from non-specific bands that may resemble other diseases. Lyme-specific bands can only mean that Lyme antibodies were in the sample they tested. Ever hear of anyone who is sort of pregnant?

Bowen takes a different approach, and actually cultures (grows) the bacteria from your blood sample and photographs the bacteria themselves. They are a non-profit doing research and ask for a $215 tax deductible donation to conduct testing for Lyme, Babesia and Ehrlichia.

Your doctor can call Bowen and they will fax all of the necessary forms to your doctor's office.

Doctors who are experienced and knowledgeable in treating Lyme Disease (often referred to as Lyme Literate Medical Doctor, or LLMD) do not base their diagnosis solely on the tests. In fact, these experienced Lyme doctors often make a diagnosis of Lyme Disease even in the face of negative tests. Their diagnosis is based on symptoms, not simply a positive or negative test result. This is called a "clinical diagnosis."

Symptoms
As you can tell by the chart, symptoms for all four of these diseases are very similar, and this situation is further complicated by the fact that laboratory tests for these diseases are not very accurate. That is why many Lyme specialists treat for coinfections in order to be sure of eradicating the disease.

It is also important to realize that you may not have all of these symptoms, and that the ones you do have may be mild, or go away temporarily. Aside from blood in my urine for a couple of days, I didn't have any symptoms for about 2 months. Don't be fooled into thinking this will just go away. Early treatment is key.

And it is very important that you see a doctor that specializes in treating Lyme Disease. Your family doctor will be using outdated treatment protocols that do not effectively cure the disease. It has been proven again and again that 3 to 6 weeks of antibiotic therapy is not enough to cure this disease, especially when considering coinfections that prevent Lyme from even being targeted during initial treatments.

You must eliminate coinfections before you will do any good treating Lyme. You can find a Lyme Disease specialist (LLMD) by using the links at the bottom of this page. Specifically, go to Lymnet.org and go to the "Seeking a Doctor" Flash Discussion message board.

[Printable expanded list of symptoms compiled by Melissa Kaplan]