posted
My GFP referred my file for review with ID. The ID reviewed and stated no objective finding for Lyme.
I did the symptom check list and have 33 of 38 symptoms on it and have had for 8 years!
My medical records are full of them!
What is up with these people????? That is INSANE!!!
I have appt with an LLMD on Tuesday. If he says the same thing then I need to check myself into a psych ward.....How do you deal with this???
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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1Bitten2XShy
Unregistered
posted
If your Dr. that you will be seeing is a true LLMD, than I highly doubt you will need to check yourself into any ward.
They will know what tests to run, send where and make the clinical diag.
You are made to feel crazy when you are dealing with the ones that know zippo!
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posted
I truly know how you are feeling right about now. I had an ID duck fire me right after 3 weeks of doxy and 3 weeks of iv rocephin for late stage Lyme.
He feels I was making it all up. What would be the reason for me to do that and why would I pick Lyme Disease????? I was so upset.
Good luck with your LLMD visit. Could you pm me and let me know who you are seeing? I live in KY and searching avidly for an LLMD around the state of KY as we do not have any here.
Thank you, and again good luck!
Hugs Perplexed
..........................
"Frogs have it easy: they can eat what bugs them." (Barbara Johnson)
Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
If this LLMD doesnt get it and act right,,,go find another,,,even if you have to travel a LONG ways to get there!!
Thats why 95% of the ID's DO get thrown in the duc category,,,cause they ARE!!!
And there are LLMD's out there that arent really either,,just wolves in sheeps clothing.
When a REAL LLMD that regularly treats,,, agrees you dont have lyme,,,then maybe start believing!! Until then KEEP LOOKING!!IB--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
cj, you're learning that you and only you are in charge of your health. Doctors are not gods, seems like high percentage of them that are ID are really ID for IDIOT. Many others don't seem to have the answers.
Many of us go on and take our health and well being into out own hands with as many different tools as we can find. After all who else is going to fight for your life??????
Just use your energy to seek help for you and forget fighting the political battles for now. I started out sounding just like you back in '99 and I had a dx within 10 days on illness from hell.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"My GFP referred my file for review with ID. The ID reviewed and stated no objective finding for Lyme."
Congratulations! You've got Lyme!
The standard line above which is used by the ducks is among a few of the tip off clues to let you know for sure you have contracted Lyme disease.
When the IDiot ducks state for sure you don't have it... and keep in mind that is how these slymes earn their pay checks because no self-respecting person with Lyme would go to one if they knew better in advance...
Anyhow.. if they say they can't find it or you don't have any signs of it... be assured...
posted
you all crack me up! i guess you have heard it so many times.
i have only heard it twice now. so new to me...hence newbie!!! should chane my screen name huh!
oh wait...you all can see that anyway, huh!!??
I am soo glad I found this site...you can keep smilin in spite of the...well you know what...swirling around me
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
r u 2 married???? LOL i have read several verbal tennis matches between u 2 in my research...
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
CJ- I had a similar event: In 2004 I could barely walk, could barely talk, was practically a ghost, so so sick. After seeing many doctors in just a few months, I went to this ID guys office that was recommended as being a top-notch lyme Dr. -Not only did he NOT examine me, NOT take bloods, and NOT address my questions, he threw me out of his office and said "Lyme is in the courts, I can't help you. You probably have *blank* disease (a horrible fatal one). Go get checked out for that." Then they billed my ins co. and when I asked for my records of that visit later on-- he took months and months with legal documents for me to sign to get them. Despicable. Then I got smart and found the real thing. Trust your instincts. When a Dr is NOT listening to you, YOU pay attention and get out.
Good Luck on Tuesday. Hope you are on your way to getting well.
Posts: 11 | From NYC | Registered: Aug 2007
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posted
ID docs are THE WORST! ZWHen my daughter was first diagnosed, we went to one for a second opinion because the first doc said she had fibro (despite CDC positive WB) and the second was going to put her on a month of IV rocephin to "prove she didn' t have Lyme"--ostensibly because if she was still sick afterwards, then she "Must have something other than Lyme." This third doc went so far as to have a spinal tap done. THEN when it turned out negative referred us for a shrink...
Now mind you, in all this time she never had ANY treatment...all three docs were taking enormous stock in a three week course of abx she had taken a full 7 months before the WB was run and which she didnt even finish because she felt so crappy taking.
ARRRGH the defensive politics of this disease just kills me...any oithger diagnosis and they'd be running these guys out on a rail...right to malpractice court!
Posts: 217 | From New Jersey | Registered: Apr 2007
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bettyg
Unregistered
posted
you asked if lymetoo/tutu and tincup are married?
yes, but not to each other!! both women have hubbies that support our lyme cause!
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I was kidding, being fascisous (spelling?) and i meant to each other...they banter as if they were!
Thanks to everyone!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi CJ,
*** Your general physician wouldn't have referred you to a specialist unless there had been some indication of Lyme disease or other unusual lab tests.
You probably had a positive antibody test, the initial test, and a positive confirmatory test, which is the Western blot. The latter test looks for specific antibodies to the bacterial agent of Lyme disease.
I doubt your physician would have sent you to a specialist if only your initial antibody test or "titer" came back positive. He probably would have attributed the positive result to a high false positive rate.
You need to go to your physicians' offices and ask them to give you a copy of both doctor's notes and the complete test result reports of everything that was done.
This is your right as a patient. Keep your own medical file at home. It's invaluable.
When you get the lab reports, you'll learn exactly what the specialist was trying to sweep under the rug.
In the meantime, call the epidemiology department of your state health department. Ask them to send you all the Lyme case counts for your state since they began keeping the records.
You can put your county-by-county findings in a spread sheet or on a county map of your state.
We'd love to find out how many of your state's counties are endemic for Lyme disease.
The CDC case definition for Lyme disease states that 2 previously aquired cases make a county endemic. TWO !
I think you'll be very surprised at what you learn.
I'd love to see the results from each state posted online, such as on Melanie Reber's Lyme Memorial website. She has a link to specific tick-borne disease information for each state.
Do you think you were infected where you live?
[ 23. August 2007, 09:13 AM: Message edited by: hshbmom ]
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
MOST IDs suck! I paid out of my pocket to see an LLMD that is also an ID. He gave me a positive clinical diagnosis.
The military says the treatment protocol is too dangerous to try??? Instead they want to biopsy my brain!!! Then, if they prove it's Lyme, they'll treat.
Like the caveman on the Geico commerial,"UUhhh What?!?!?"
All I have is an overall positive antibody and symptoms (and a PET scan consistent with Alzheimer's). No other labs support Lyme, so my original ID and Neurologist (self proclaimed Lyme experts) say, "No Lyme."
My LLMD is the only doctor that has listened to a word I've said.
I've just got to find a way to pay for my meds now, because the military won't.
Posts: 22 | From Texas | Registered: May 2007
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Grace that's horrible. You should hang that guy out to dry! One day he will eat his words.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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