You've probably ruled out Lyme Disease if you never saw a tick bite you, never had a rash, or had a negative blood test. Please, please do more research on Lyme. It was suggested I had CFS because everything else was ruled out and docs couldn't find anything wrong with me. I finally went to a doc that suggested Lyme Disease. I was really skeptical but just decided to research it further. I always assumed you had to have a rash and just didn't understand that Lyme disease can mimic many different illnesses. After much research I found a Lyme Literate MD who clinically diagnosed me, and then did further blood testing where we discovered other co-infections transmitted by ticks. She tested me with a reputable lab in CA for the Lyme and then Mayo Clinic found my Bartonella and Anaplasma. Chances are no one has tested you for those (infectious diseases) if they don't suspect Lyme in the first place.
Even if you've had CFS for years, the root cause could still be Lyme.
Most medical resources will state clearly that Lyme blood tests are often inaccurate and false negatives are common.
check out www.turnthecorner.org for some very helpful resources!
Last edited by amesltl; 07-27-2011 at 12:15 PM.
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Re: Is your CFS actually Lyme Disease? please read
After years of suffering from fibromyalgia, my friend, who also has fibro and Lyme, convinced me to go to a Lyme Literate doctor. I have an appointment this Friday morning.
I'm kinda scared to find out that I have Lyme. I'm finally comfortable with the diagnosis of fibromyalgia.
The following user gives a hug of support to Aberlaine9: amesltl (07-31-2011)
Re: Is your CFS actually Lyme Disease? please read
Quote:
Originally Posted by Aberlaine9
After years of suffering from fibromyalgia, my friend, who also has fibro and Lyme, convinced me to go to a Lyme Literate doctor. I have an appointment this Friday morning.
I'm kinda scared to find out that I have Lyme. I'm finally comfortable with the diagnosis of fibromyalgia.
Don't be scared! This would be good news because you can treat it. Once you start you might feel worse at first, but then it should help diminish your symptoms over time and MANY people go into remission. I know of a woman who had "fibro" for 10 years, found out it was Lyme, and after 8 months of an intense all natural treatment, she is fine. Be encouraged
Most Lyme Literate docs would say that fibro and cfs are symptoms of Lyme, not something you have in addition to it. Bacteria is spreading throughout your body and it needs to be killed off. It's so much better to treat the root of your symptoms. I read some of your other posts, and brain fog is a classic lyme symptom- and it is reversable! Be very encouraged
Last edited by amesltl; 07-31-2011 at 06:47 PM.
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Re: Is your CFS actually Lyme Disease? please read
I saw my first LLMD last Friday. Blood work was done. I'm now waiting for the results. The tests were done at Quest Diagnostics. I'm waiting to hear about the results. If they return with a negative on Lyme, I'm to get more blood drawn and, this time, sent to Igenix.
The more I read about the symptoms of chronic Lyme, the more convinced I become that I have it. I just want this diagnosing over and done so we can get on with the fix.
Re: Is your CFS actually Lyme Disease? please read
I hope you can get things figured out! Honestly, I am surprised your LLMD didn't automatically do the test through Igenex. That's surprising! Do you know if they did the ELISA test or the Western Blot? Also, most LLMD's know Lyme is a clinical diagnosis. If you are pretty sure you have it and your doc refuses to treat you because the test is negative, I would find a different LLMD who is at least willing to try treating you to see if you respond.
Re: Is your CFS actually Lyme Disease? please read
I assume they did the Elisa test. For some reason, the doctor wanted to recreate my first test. Since it was done over six years ago and invalid at this point, she wanted this current test done at the same lab. Then, if the test comes back negative, we'll send some blood samples to Igenex.
Re: Is your CFS actually Lyme Disease? please read
I have been diagnosed with cfs in the uk, and am too leaning towards the fact i have Lyme. When i look at the symptoms list, i tick so many boxes it's ridiculous. Lyme literate doctors are very scarce in the UK and consultations and tests are very expensive. Money I cannot afford at the moment particulalrly if it is a wild goose chase. I have had the very basic lyme test here in the uk but it came back negative, so as far as my regular doctors are concerned.
Does anyone think it a good idea to try and persuade my doctor to trial me on some high dose antibiotics to see if there is any improvement.
