Elvis,
How nice to hear from you! I miss seeing your posts. And thank you for all the support. The fact that you "smell a rat" in the entire Lyme scenario is gratifying to me. Something really weird has (and is going on). All diseases and illnesses are terrible. But this one is a doozy because doctors are ignoring it and refusing care. Some of the parallels in this story to the mercury issue as well as other issues that we've all discussed here are really disturbing.
Hi Jinx and Mati,
Ok, on the testing issues. I'll try and give some info here through my fuzzed-out lyme brain. lol
The biggest problem is that there is NO medical test which will definitively rule out Lyme Disease and the Co-Infections that are usually seen with Lyme Disease.
The Centers for Disease Control in the USA ("CDC"), the Food and Drug Administration ("FDA"), the U.S. Federal Clearinghouse for Guidelines (this is the Government organization which publishes recommended diagnostic and treatment guidelines for the medical establishment), all have formally announced that
the diagnosis of Lyme Disease MUST be a clinical diagnosis based on patient history, signs & symptoms and then testing. Laboratory tests should NOT be used to exclude an individual from treatment. Tests should be used to support rather than supersede the physician's judgment. These statements are easily gotten on the websites of all of these organizations.
I'll just share again what my experience was. I will start by saying that over half of the people who are sick from Lyme Disease (and Co-Infections) will test seronegative (negative blood test). Some of the reasons for this are already known and have been shared among Lyme Literate Doctors; however, the rest of the medical establishment doesn't want to know. I'll post them again in this thread in a new post after I finish this one.
As Smitho has said, the best tests for Lyme are via PCR and the Western Blot via Igenex.
Anyway, after 11 years of illness with the last 3 years being the most difficult -- and the last year and a half being the most debilitating with new symptoms appearing, I was finally diagnosed with Lyme Disease and some of the Co-Infections that go along with it -- Babesia, Bartonella and we already knew that I had Mycoplasma.
I was CDC negative on my first Lyme blood test. This test was an ELISA blood test.
I was negative on the Igenex Western Blot blood test; HOWEVER, I had many, many Indeterminate bands and one positive band. This test has been interpreted by 3 separate physicians as a positive Lyme Test for me given my history, symptoms, signs, and given the rest of the testing I had done. In order to have been positive, I would have needed at least 2 positive bands on the blood test. I had 1 positive band and many Indeterminate bands -- Indeterminate meaning that they saw some activity of Lyme infection but not enough to make the cut-off for their positive reference ranges. That was like being a little bit pregnant.
I was positive on the CD57 test. This is a blood test that is used as a Lyme marker test. Low numbers indicate ongoing and/or chronic Lyme infection. Doctors like to see patients in the reference ranges of above 200, as that is considered normal. Any number below 60 in this test indicates Lyme infection. And if the test is below 20, it is indicative of severe illness . . . . . . My CD57 number was 1.
My Darkfield Microscopy results were negative. They did not see evidence of the particular pathogens. However, they did see overwhelming evidence of severe bacterial infection in the form of severe inflammation, white blood cell activity, etc.
The ART (Autonomic Response Testing) for Lyme Disease and Co-Infections were glaringly positive.
My Co-Infection tests were positive, even though the Lyme test was negative.
As jinx mentioned, sometimes people find that their immune systems need a challenge in the form of some sort of treatment for Lyme in order for the antibodies to be produced and appear on a Lyme blood test. Back in the Fall when I finally got round to proper testing, I had already had some of those challenges/treatments in the form of short courses of antibiotics, Cat's Claw, etc. -- yet I still tested blood negative for Lyme initially.
My situation is not unusual for a Lyme patient as far as testing results go. And it is also important to try and get evaluated and tested for the Co-Infections that go with Lyme.
I still have the metal toxicity issues that need to be dealt with as well. But I need to try and get the bacterial load down a bit first.
Many patients have to travel far and wide in order to be evaluated for Lyme Disease and Co-Infections. Many have to travel to other countries for evaluation and treatment. The highest concentration of Lyme Literate Doctors appears to be in the U.S. at the moment. But even then, treatment can be very hard to come by due to long distances traveled to said doctors and long waiting lists due to demand.
I guess what I'm trying to say (and I'm not saying it very well!), is that testing for Lyme & Co-Infections can be as difficult as testing for heavy metal toxicity and/or mercury poisoning as far as getting results. There seem to be alot of false negatives on tests.
If you test negative on a Lyme test and are still having symptoms and chronic illness, it's important to be evaluated by a Lyme Literate Doctor so that they can help you rule in or rule out the possibility.
Sorry for all the "wordage" here. I wanted to try to comment on everyone's responses.
Sharon
p.s. As I've said already, mercury poisoning/heavy metal toxicity is often seen along with these illnesses. I guess the metals just interfere with our bodies enough to make it hard for us to fight off these infections.
p.s.s. Two good places to start for finding resources and info on Lyme and Co-Infections are:
http://www.lymenet.orghttp://www.canlyme.com/
