Friday, February 1, 2008

Lyme Testing

The CDC recommends certain protocols regarding testing for Lyme disease.

If you are one of the many patients suffering from the symptoms listed on my post from January 5, 2008 Link Here , or a medical practitioner who has a patient with these symptoms, please do not hesitate to test them for Lyme disease.

The following is the testing protocol recommended by the CDC for Lyme disease.

"CDC recommends a two-step process when testing blood for evidence of Lyme disease. Both steps can be done using the same blood sample.

1) The first step uses an ELISA or IFA test. These tests are designed to be very "sensitive," meaning that almost everyone with Lyme disease, and some people who don't have Lyme disease, will test positive. If the ELISA or IFA is negative, it is highly unlikely that the person has Lyme disease, and no further testing is recommended. If the ELISA or IFA is positive or indeterminate (sometimes called "equivocal"), a second step should be performed to confirm the results.

2) The second step uses a Western blot test. Used appropriately, this test is designed to be "specific," meaning that it will usually be positive only if a person has been truly infected. If the Western blot is negative, it suggests that the first test was a false positive, which can occur for several reasons. Sometimes two types of Western blot are performed, "IgM" and "IgG." Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive.

CDC does not recommend testing blood by Western blot without first testing it by ELISA or IFA."

As stated in my post, dated January 19, 2008 Link Here , if you initially have a negative result from the ELISA test, re-test, as there are many instances when there are false negative results and many people actually find that they have Lyme disease.

Here are some general comments from others who have been through the testing and treatment ordeal. Disclaimer: These are strictly opinions and may contain information that individuals may state is factual. All stated as fact has not been verified as factual. Link Here

"The Infectious Disease doctors I've worked with are usually very reluctant to diagnose Lyme disease even with a positive test. It looks like a lot of other diseases as the summary states."

"More than any two week treatment of antibiotics that your average physician would prescribe for Lyme.
I improved moderately under their care – but I've seen people whose lives were completely turned around. They went from being completely debilitated to living on their own, getting jobs, and just being healthy. I've seen autistic children treated by these doctors who had previously been unable to function around people - and after weeks and months of treatment, it became obvious that they were doing much better.
Such medical journals that dispute the existence chronic Lyme make a very compelling argument, but then again, I've been sick for 8 years and continue to improve under the guise of being treated for chronic Lyme."

"If you have the bullseye, you're lucky. Only approximately 30% do. It is true, that if you see it and catch it early, you can eradicate it before it gets into organs or the central nervous system. I however, was not so lucky and floundered around for 4 years worth of "Chronic Fatigue Syndrome" "Chronic Mono" diagnoses that went nowhere."

"They have found that Lyme disease mimics many of the major symptoms of these diseases. I have Lyme and I have been taking both drugs for Parkinson’s and Alzheimer's to help alleviate my symptoms. Further there is more and more evidence showing that many of these diseases may have roots in Lyme disease. Since Lyme is still very hard to diagnose it makes studying this even harder, but I can tell you in the Lyme clinic I go to, there are people there that have been diagnosed with everything from schizophrenia to Alzheimer's and ALL have made a recovery."

"At the age of 10 I had chronic headaches and inflammation in my leg joints to a point where I couldn't walk without experiencing excruciating pain. Over 2 years, I saw many doctors and was told that I had juvenile arthritis, was a generally weak person and needed to exercise, that I was born with one longer leg, that I was experiencing growing pains, etc etc. It was only until I was referred to a specialist for an x-ray that he took a single look and knew immediately that I had Lyme disease. Two months of anti-biotics and anti-inflammatories later, I was free, (and very pissed at my previous physicians)."

"I'm 27 now, I've had symptoms since I was 14 years old. For the past 3 years I've been taking antibiotics. It’s a slow recovery but long term antibiotics do help, immensely. I'm now recovering. There are a few issues I still have but I am so much better then I was when I started treatment. Lyme Disease has taken 13 years away from my life and what scared me the most is that I didn't know what they hell was happening for the first 7. It wasn't until my mom found this research center and they matched my symptoms for a Lyme disease test. Even after that, most doctors I see are reluctant to even admit I've been sick. I got to my doctor every week for shots and the therapy is expensive. To make things worse the Infectious Disease Doctors Association just released new guidelines earlier this year that pretty much rule out most cases of chronic Lyme. The Lyme community is up in arms about this, and if you think you may have been suffering from Lyme do not go to one these quacks. They will simply tell you that Lyme doesn't exist and the most amount of antibiotics you will get out of them is 4 weeks. Now mind you there is no evidence showing that 4 weeks of antibiotics even helps. They know this and still will not back down. Its makes me mad but I know I am extremely lucky to have found a doctor who knows how to treat chronic Lyme. I am not where religious but I have to say it is a blessing."

"For Lyme Disease? There are tests, it's just that most of the commonly performed tests (ELISA) can be wildly inaccurate and false negatives are common. PCR testing is apparently more reliable and accurate, with a PCR test they actually can determine whether or not you have DNA from the Lyme Borrelia spirochete in your body. False negatives are much, much rarer with PCR testing.

The other problem is treatment of the disease. The standard medical procedure is to treat with antibiotics for a few weeks and that should kill the infection, and in many cases it can, but some sufferers develop a chronic condition which can last years. Many sufferers visit so-called "Lyme Literate MDs" who actually know a bit about the condition, and how to treat it more effectively.

See the problem with the Lyme spirochete is that it is a really, *really* stubborn pathogen that likes to stick around in your body and has a whole host of defense mechanisms to avoid being killed. It can hide beyond the blood-brain barrier where some antibiotics can not reach, it can invade other cells to "hide" from the immune system, it can also morph it's form into "spheroblasts" where it goes into a kind of stasis or hibernation, and while in it's little protective bubble it is unaffected by standard antibiotics and goes relatively unnoticed by the immune system. When it's in this form you need to use antiparasitic drugs like Flagyl to destroy it.

It really is a royal pain in the arse to treat and eradicate, it's the Houdini of the microbe world, it seems like no matter what you throw at it, it has another trick up it's sleeve. How do I know so much about it? I was bitten by ticks five years ago and I endured illness for three years after, with countless doctor visits, MRIs, months of antibiotics and huge medical expenses. Thankfully, I now appear to be on the mend.

All I can tell you is this: knowing what I know *now*, DO NOT get bitten by a tick. Even if they don't carry Lyme, they can inject you with all kinds of nasty toxins and microbes. If you are in a known Lyme Disease danger area, and you are bitten, seek treatment by a Lyme Literate doctor IMMEDIATELY. DO NOT accept "there is no bullseye rash (Erythema migrans), so it cannot be Lyme" from your doctor, because the rash generally appears in less than 30% of cases. The quicker you treat it, the better chance you have of full recovery."

As you can read from the above comments, there are many differing experiences regarding Lyme disease, diagnosing, and treatment. The important piece of information that I wish my readers to take from this is that testing may lead you to the answer you have been seeking. If the tests ultimately end up with a final negative, at least you will have found that Lyme disease is no longer on your list of optional diseases for your symptoms. If you find that Lyme disease is your culprit, you will find great relief in mind, body, soul, and pocket-book.

Sources: (previous posts with sources)

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