WHAT IS LYME?
Lyme is an infectious disease caused by the spirochete, Borrelia burgdorferi (Bb). It results from a tick bite. Ticks are also known to carry other parasites. Along with Lyme disease, ticks can cause other co-infections such as Babesiosis, Ehrlichiosis and Bartonella. Symptoms for these infections are quite similar to Lyme itself. Lyme is diagnosed mostly on a clinical basis, because lab tests are not 100% reliable and tend to show many false negatives....especially in patients
with Chronic Lyme - infected with Lyme for more than 6 months. Basically Lyme
suppresses the immune system and creates havoc in every body system. The longer you have Lyme - undiagnosed - the more symptoms you will see...especially neurological.
The diagnosis of Lyme is mainly a clinical one as lab tests are highly insensitive and the timing has to be just right. If you are bitten by a tick, sometimes a bulls eye rash will appear. But this occurs in less than 50% of people. It may occur anywhere from 4 days to several weeks after the bite, IF it happens at all. If it does, it is important that you seek medical attention and receive antibiotics! Do not wait for test results to confirm the diagnosis because blood tests (ELISA, western blot, etc) do not usually show positive results for several weeks after the tick bite occurred. You should not delay treatment as this is the time when the
success rate is the highest.
Lyme Disease mimics many other diseases like Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, Alzheimer's, Rheumatoid Arthritis and many more. All these conditions have similar symptoms like fever, malaise, fatigue, headache, muscle aches and joint pain. Thus the reason so many people are misdiagnosed before ever even being tested for Lyme Disease.
TESTING FOR LYME
This is where things get kind of rocky. A regular physician will order a typical Lyme test which will consist of an ELISA blood test. Based on this test result, testing will either continue or stop at the lab. If the ELISA is negative, all testing stops. If the ELISA test is positive, then the lab will perform the western blot test. This test will show which bands are reactive to Bb. Basically if you are infected with Bb. It tells specifically what you are infected with. Here it gets complicated so I will stop there!
The ELISA test is highly insensitive - only about 60% accurate. And remember, you have to be tested at precisely the right time in order for the test to be accurate. So basically the stars have to all line up exactly!
In my case, the ELISA test was negative so the western blot was not performed. Luckily, I had educated myself and was unwilling to stop there. I demanded a western blot - yes, you CAN MAKE DEMANDS when it comes to YOUR health care! Thank you Mom for this very important life lesson! So the western blot is what showed that I do indeed have Lyme disease.
Again, Lyme disease requires more of a clinical diagnosis. So a good doctor will look at your symptoms as well and not just rely on lab results.
There are also several other tests out there for Lyme disease such as the PCR and CD-57. Normally, only a Lyme Literate Doctor will run these tests as they are familiar with understanding the results.
TREATMENT OF LYME DISEASE
After a tick bite, Bb can be found in the central nervous system within 12 hours. 12 hours!! This is why it is so important to receive treatment immediately with antibiotics! The longer a patient has been sick with Lyme before treatment begins, the longer the treatment will need to be, and the need for aggressive
If treatment begins within a few days after a tick bite, a normal course of antibiotics of about 2 weeks is generally given.
If Lyme disease goes undiagnosed for any length of time - greater than 4 weeks - a more aggressive approach is typically needed, i.e. IV antibiotics.
There is quite a controversy
in the Lyme world on how Lyme Disease should be treated. According to
guidelines written by IDSA (Infectious Disease Society of America), all Lyme
Disease patients should be treated with 2-4 weeks of antibiotics - no matter the
duration of the disease. So if the patient has gone undiagnosed/misdiagnosed
for 10 years and suddenly receives a Lyme diagnosis, 2 weeks of antibiotics
should fix them right up! Can you imagine?!?! Lyme is the only infectious
disease that is not treated long term - per IDSA guidelines. Syphilis,
Hepatitis, Tuberculosis, HIV, MRSA....to name a few...all treated with long term
antibiotics over a period of several months or even years. Sadly, these are the
treatment guidelines that most insurance companies follow. So if a patient
suffers from chronic Lyme, some insurance companies may refuse to pay for ANY
antibiotics or treatment outside of this initial two week period. Again...can
you imagine?!?! All I can surmise is that the members of this board have never
had any family members or close friends contract Lyme. Also, this board was
asked to write these guidelines to be used for insurance purposes. Things that
make you go hhmmmm.
On the other side of the controversy stand LLMDs (Lyme Literate Doctors) and patients who have/do suffer with Lyme disease. Some who have gone undiagnosed for many years. ILADS (International Lyme and Associated Diseases Society) treatment guidelines recommends treatment for symptomatic presentation - again Lyme disease is more of a clinical diagnosis. They also recommend that treatment should not be withheld based on lab testing - in the case of false negative results, longer course of antibiotic treatment and repeat antibiotics for recurrences.
Now finding a doctor to treat you according to the ILADS guidelines is extremely difficult. These doctors have been hauled before medical boards mostly by complaints from insurance companies - you see, they are spending THEIR money, and threatened with the loss of the medical license. Some have been forced to close up shop, relocate, or sadly stop practicing altogether. We need these LLMDs! They are the ones who "get it". They understand it, us. They have a true passion for treating and helping the sick and suffering. These are the real heroes of the medical world! Without them so many would still be wondering, worrying and wounded.
In order to find a Lyme Literate Doctor you have to go underground. You can't just google 'lyme doctor in Atlanta'. Trust me on this one! ;) This is how I found a doctor. First I watched "Under Our Skin" and decided I needed to see Dr. Jemsek. If you watch the film, you will understand! Anyhow, I joined 2 online Lyme support forums.
From there I had to give certain demographic information on the board to ensure
I wasn't "phishing" or some undercover spy from the insurance world or medical
world. After I passed that test, someone would Private Message me a list of
names in my area/state. Then you're on your own. Talking about these doctors
in public forums is frowned upon. We don't want to make ANY trouble for these
docs! You can't google them. Some have websites but there won't be any
information about how they treat Lyme disease. It's like a secret world or
society. It's just crazy. This, folks, is our health care system! Our doctors
have to secretly treat patients with Lyme Disease!
Here are some additional facts to enhance your knowledge!
- Fewer than 50% of patients with Lyme Disease recall a tick bite.
- Fewer than 50% recall any rash.
- CDC states they believe only 10-12% of Lyme Disease cases are actually reported to them - about 25,000 per year.
- Following the CDC's own under-reported criteria, almost 300,000 cases of Lyme go unreported every year!
- Of the total vector borne illnesses found in the US, Lyme Disease is by far the most prominent and it accounts for more than 95% of the vector borne cases of illness in the country.
- Lyme Disease has surpassed AIDS as one of the fastest growing infectious epidemics in our nation.
- Dr. Dietrich Klinghardt of Seattle, Washington says, "In the past 5 years there has not been a single patient with Lou Gehrig's/ALS, Multiple Sclerosis, or Parkinson's Disease that did not test positive for Lyme Disease." In addition, ALS, MS, Parkinson's and Alzheimer's have no known cause or origin.
- There is a link between Bb - Lyme Disease - and Alzheimer's according to Dr. Alan McDonald. He tested 10 brain samples of Alzheimer patients, and 7 out of the 10 samples contained the Bb spirochete!
Ok so the quiz will be tomorrow! Even as I fight
this long uphill battle myself, I just want to get out there and raise awareness
for Lyme!!! I want to educate people! It breaks my heart to think that people
are out there suffering for so long and all they need is one simple blood test
and one good doctor. I am hoping that after this is all said and done, and I am
healthy again, that we can continue to raise funds for Lyme Disease. I would
like to keep raising awareness and do what I can to educate as many people as
possible! If you haven't watched the documentary "Under Our Skin" yet, I
encourage you to do so. It will bring all these facts and figures to life!
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