Just had an appointment with a second GP. My usual GP has run out of ideas for a "mystery illness" I've had for the past 6 weeks and referred me to her colleague.
Both GPs have said that since my ELISA test is normal, and since I live in a low-risk area, there is no way I can have Lyme Disease. They will not give me antibiotics.
The new GP I saw today went as far as to say the problems with accuracy in the test are false positives, not false negatives, and that my symptoms do not indicate Lyme.
New GP is testing for a very rare adrenal tumor instead, and said that if that comes back normal, I probably have an anxiety issue.
I've met with two psychiatric specialists, both of whom think my symptoms are likely physiological, not psychological.
Seems like everyone is passing me off to someone else.
I have an appointment on 9.23 with an LLMD 7 hours away. Based on my symptoms below and the negative ELISA, do you think I should make the trip?
Just starting to second-guess myself since no one else thinks I could have Lyme or a related illness.
On 7.31 had abrupt onset of these symptoms: -anxiety/panic -fatigue -chills/sweating -dry skin -lack of appetite/nausea -cognitive difficulty -some postural hypotension -emotionality (only lasted a couple of weeks)
Around 8.15 developed -intermittent low-grade fever (~99.7) -joint pain -pelvic pain -sore throat -intermittent high heart rate (~100)
Around 8.29 developed -headache -muscle pain
Around 9.7 developed -muscle twitches -clumsiness -dry mouth/thirst
Posted by Harmony (Member # 32424) on :
see the LLMD, I think
shame you can't find one closer
but, hey, if they can help you isn't it worth the trip?
people drive that far and stay in a hotel to get a tan at the beach Posted by sutherngrl (Member # 16270) on :
Definetly go see a LLMD. Your GP's do not know what they are talking about. And the Elisa test is pretty much worthless. This is typical treatment that we get from regular GPs because they want to sweep Lyme under the rug.
Posted by ralphi (Member # 33834) on :
Thanks!
I will keep the appt. There are some closer, but they have mixed reviews. This LLMD is supposed to be the best in the region. And I have family halfway.
I've been misdiagnosed by these docs in the past.
It's at a Uni heath center, and I have to go there first and get referrals to specialists for insurance purposes.
Posted by Harmony (Member # 32424) on :
sounds like you know what you're doing
don't let the turkeys get you down!
Posted by lymeboy (Member # 24769) on :
to put it simply, yes they are routinely UNDEREDUCATED about Lyme disease.
Posted by BackinStOlaf (Member # 23725) on :
This sounds like the story of many of us when first trying to get a diagnosis. We gets bounced around with doctors telling us we couldn't possibly have lyme and spewing incorrect information about the disease.
A doctor once said to me "you don't have lyme, i see patients who have lyme and they are in wheelchairs"..
he said this just by looking at me.
I'd see an LLMD sooner than later
Posted by James1979 (Member # 31926) on :
For Lyme, IMO it's not really "uneducated" or "undereducated", but rather "mis-educated". They're being taught things about Lyme, but the things they're taught are completely incorrect.
Posted by ralphi (Member # 33834) on :
Ok guys,thanks for reassuring me! Just starting to lose trust in the medical profession in general...guess I'll be taking a road trip to the LLMD! She also treats fibro and CFS, so hoping for an actual diagnosis, or some better clues, anyway!
Posted by James1979 (Member # 31926) on :
Try watching "The Burzynski Movie", which is available for free on YouTube, if you want to learn how corrupt the medical industry is. I highly recommend that documentary for everyone.
Posted by hopeful4 (Member # 8486) on :
You are thinking and heading in the right direction by seeing a LLMD! Three cheers for you!
Forget the GPs and the ELISA test. Lyme disease is a clinical diagnosis, therefore the clinician has to first know something about it!
The ELISA test is notorious for it's false negatives. Many of us have tested negative on the ELISA, and positive on the IGENEX Western Blot.
Your symptoms are highly suspicious of Lyme and tick-borne illness. Best wishes in finding the answers you need and deserve.
Posted by JLaw (Member # 31159) on :
Their all idiots!!! See the LLMD you can also ask your doc to draw your blood and you send to IGENEX, go to their website, very informative and they will send out a test kit for free. Will cost around 100.00 for them to test you. You may want to do that first, but you will eventually need to see an LLMD if you have it unless your GP will agree to treat based on those test results. Where do you live?
Posted by ralphi (Member # 33834) on :
Thanks everyone! I think my GPs have just run out of ideas. I've seen 3 GPs, an endocrinologist, gynecologist, psychologst, and psychiatrist. All are saying they have no idea what is going on and that I should just treat the symptoms (which are getting worse every week).
I live in East TN, where there are apparently enough infections that they have a support group here! Most of the people I've talked to know someone with Lyme. The LLMD is in NC.
Posted by map1131 (Member # 2022) on :
Not only uneducated, but they are also unwilling to learn/study anything about lyme. It's easier to call it something else. Therefore comes all the CFS, fibro, MS etc labels. So sad.
Pam
Posted by stillhope (Member # 32764) on :
Did you ever see the doc in NC? What did you think of him? I live in Utah. I have a son that lives in Wilmington NC. I may go stay with him while starting treatment. Where in NC is the Doc?
Posted by ralphi (Member # 33834) on :
Stillhope, I'm PMing you.
Posted by ralphi (Member # 33834) on :
It's kind of ironic, the more I think about it...
My doctors have no idea what is wrong with me, and are offering me serious painkillers like Neurontin, and drugs that alter your neurotransmitters (SNRIs),
but completely refuse to write a prescription for an antibiotic just to SEE if it helps.
Also ironic is the fact that I was on many of the same antibiotics used for Lyme and co-infections (albeit low doses) for about a decade for acne, and no one blinked an eye.
Posted by Razzle (Member # 30398) on :
Ralphi,
Welcome to the world of Lyme...everything about this illness is controversial - IDSA/CDC vs ILADS.
The only thing everyone agrees on is that the tests are only supposed to be used for tracking purposes, not for diagnostic purposes.
Unfortunately, most MD's rule out Lyme from a negative test - even in those with a "classic" presentation (known tick bite, followed by bull's eye rash, joint pain, flu-like symptoms, etc.).
![[Big Grin]](biggrin.gif)