Lyme dit's ease test negative

[acesmom]

Has anyone had a test negative with lab corb but had lyme disease. If so how do you get a doctor to take you serious and retest

[JackieCalifornia]

[sorry, I was interrupted]

Vitamin C is nice, but it will not kill bacteria.  Antibiotics kill bacteria, and Lyme is a bacterium.  Some docs think antibiotics do not kill Lyme, because Lyme can persist after treatment ... but the reason that can happen is that the docs don't understand that the Lyme bacteria encyst (hide in cyst-like structures) that the antibiotics *cannot pierce*.  That may look like a treatment failure, but is actually an 'entry' failure, where the commonly used antibiotics are unable to break through the cyst wall to kill the Lyme bacteria.

I had Lyme disease and babesiosis.  I was treated with oral antibiotics, first for babesia and, when that was kicked, I was switched to a different oral antibiotic to treat Lyme.  It worked perfectly, as was my family member's same two infections.  It works, as long as the doc understands the chemical mechanisms that are in play.

The Western blot and ELISA tests are useful if positive, but those same tests can often produce an incorrect *negative* result for Lyme, because Lyme bacteria have the ability to *suppress* the immune system's action against Lyme.  If the immune system isn't able to work properly, the diagnosis will not be accurate.

Western blot and ELISA tests are accurate IF positive, but if they are negative, the tests may be *wrong.*  Most standard docs (that is, non-LLMD, non-ILADS docs) do not take this into account.  

[JackieCalifornia]

You say, "Standard medicine only uses antibiotics. Once you are chronic, they generally do not work."

I beg to differ that antibiotics 'generally do not work'.  It is often that MDs who don't really understand Lyme and the other infections often carried by the 'Lyme' ticks do not test for those other diseases (as a group, called 'co-infections').

Different testing is needed, as may be different medications, such as for bartonella, babesia, ehrlichiosis, and others.  So if may not be a failure of Lyme treatment, but instead a failure of diagnosis by the MD.  Most Lyme docs are quite aware of this aspect, so seeing another doc may be in order.

[Lefty219]

All of the many tests I had, which were the standard ELISA test fir Lyme (recognized by the CDC) were negative. Finally, I had a very knowledgeable and conscientious doctor, who recommended I get the Western Blot test (not recognized by the CDC). The western blot is much more accurate. The ELISA is reknowned for giving false negatives. I have encountered many physicians, who do not believe Lyme to be a real illness, or at least not chronic. They are unaware or unwilling to recognize that Lyme can present as many different illnesses. I have Chronic Fatigue. My girlfriend has fibromyalgia. Others have Bell's Palsy, Parkinsonson's, or a myriad of symptoms of other diseases. If your doctor will not do a Western Blot test, or refuses to believe you have Lyme disease, GET ANOTHER DOCTOR! I cannot strss that enough. I have had to switch doctors many times. I would also recommend finding a doctor listed with ACAM.ORG. These doctors use alternative medicine, the only thing that has helped over the many years I have had Lyme. The treatment is Vitamin C infusions. It is doubtful that any regular physician would recommend or even believe in this therapy. Standard medicine only uses antibiotics. Once you are chronic, they generally do not work. I tried everything, even a cocktail of antibiotics, which came at great cost, little indication that it woukd be effective, no information as to how long that treatment would take, and only served to make me much sicker than I already was; and I was very sick! Many people I have met have been cured using this treatment. The only reason I am not yet cured is because I cannot afford to have regular treatments. Generally, insurance companies will not cover the treatment. I hope this information can help you. Lyme is real and even the CDC has finally come out to say it is under-diagnosed. This is an amazing irony, since they do not recognize the one test that can correctly diagnose it!

[mojogal]

Yes, my lab Corp was negative and a few months later my igenex was CDC positive

[JackieCalifornia]

[I replied to your second post, above]

[grdner]

Oh, yes.  My test was not with Lab Corp, but because the tests that are available are not terribly reliable, and even the better ones may not detect all the strains (I read yesterday that scientists have identified more than 20 strains of Babesia and the tests can only detect 2 of them).  Lyme is a very tricky anyway, and the longer you've had it the harder it is to detect because the bacteria burrow in, create biofilm walls to hide behind, and evade detection by the immune system.  And even a "negative" test may have useful results - for example I have significant readings on the Lyme-indicative bands but not high enough on enough of them to have an official positive result.

Lyme is frequently a clinical diagnosis by a doctor very familiar with the disease (a Lyme-literate doctor, LLMD as we call them) who looks at symptoms, possibility of tick exposure, test results, etc. to determine if you should be treated for Lyme and possibly one or more of its co-infections.

So, getting someone to take you seriously is a matter of finding the right person; someone who knows enough about Lyme and also believes it is real.

What are your symptoms?