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
Posts: 330 | From TN | Registered: Sep 2011
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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
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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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.
Posts: 330 | From TN | Registered: Sep 2011
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-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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lymeboy
Unregistered
posted
to put it simply, yes they are routinely UNDEREDUCATED about Lyme disease.
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
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
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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James1979
Unregistered
posted
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.
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posted
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!
Posts: 330 | From TN | Registered: Sep 2011
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James1979
Unregistered
posted
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.
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Your symptoms are highly suspicious of Lyme and tick-borne illness. Best wishes in finding the answers you need and deserve.
Posts: 873 | From WA | Registered: Dec 2005
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posted
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
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.
Posts: 330 | From TN | Registered: Sep 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
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?
Posts: 14 | From Utah | Registered: Jul 2011
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posted
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.
Posts: 330 | From TN | Registered: Sep 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
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.).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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