I'm new to this whole lyme thing. I've been sick for quite a while but just diagnosed by an LLMD last week. Right now, I'm overwhelmed and not sure really where to turn. I have a few questions if you don't mind...
The infectious disease doctor I saw a few months ago said repeatedly that I don't have Lyme. This was before the positive test results, but I've heard they don't accept Igenex results anyways so I don't want to go back. What are the chances that my Igenex results are a false positive? I would appreciate it if you all could look at my results.
Can someone explain why it is that ID docs hate Igenex? Actually, the ID doc even refused to retest my blood since the only band that showed up on my previous non-Igenex test was 41 -- said it was a waste of time and money.
He also said my symptoms are neurological and to go back to my neuro. My neuro says my problems aren't neurologically based and to see an ID doc. My neuro accepts these + results, but he won't treat it -- says it's out of his league and wants me to see an infectious disease doc -- he referred me to the one I'd already seen. PCP says the same thing. I want to scream!
So how does this illness ever get treated -- particularly without going completely broke? The LLMD would like to put me on IV meds for my neurological problems, but no one wants to work in tandem with her to get it paid through insurance. Also, do insurance companies fight you over paying for oral antibiotics?
I'm sorry for all the questions but I'm phenomenally frustrated. I just want to feel better, but I'm spinning my wheels and getting no where. And I keep doubting whether I even have this disease.
Thanks for your help, Jennie
Posts: 45 | From New Jersey | Registered: Sep 2008
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Thank you for your reply and your welcome to the site. I'll move this over to medical.
I know the Igenex paperwork says positive at the top, it's just so unsettling to me to have the chief of infectious disease at a top hospital completely dismiss me and tell me to not pursue lyme anymore.
I just can't help but be baffled by why there is so much animosity towards Igenex and why the results aren't accepted by infectious disease doctors.
Oh well. I'm seeing that it's going to be a long tough battle. Thanks again for the reply.
Jennie
Posts: 45 | From New Jersey | Registered: Sep 2008
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posted
Because 95% of ID doctors are ignorant about Lyme disease. They have no clue and they don't WANT to know.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
check out my newbie package link below...
you asked about affording it, look for FINANCIAL BURDENS, 20-25 pages of outstanding info.
you are in the LYME WAR; CAMP A VS. CAMP B
a is infectious drs. who do not believe in CHRONIC LYME; treat for 3 weeks and under, and don't like igenex ... that's THEIR PROBLEM!
b is chronic lyme literate, llmds!!, ILADS drs.
look thru table of contents and you can find that to read all about.
it's time to read, read, and read; do NOT read any IDSA, INFECTIOUS DISEASE SOCIETY info from infectious drs!! 1 sided only.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Stick with your LLMD.
They know more about Tick Borne Diseases than the ID or Neuro duck.
It is frustrating to have so many "professionals" give
Opposite opinions regarding test results and diagnosis.
Agree with Lymetoo. Your WB is highly positive....
Look at all the bands specific to Lyme disease!
While no one wants to have Lyme, now you know...have been diagnosed.
Time to move on to getting better. The ID ducks and neuro ducks
Do not have your best interest at heart.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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