I'm so excited that I am going to see a doctor that will be able to say if I have Lyme or not. (Next Tuesday)
But I have been thinking about it and I'm worried... He actually run tests through IgeneX and do clinical dx, but he is not a LLMD.
My problem is that I have been so sure I have Lyme that I am afraid that if it is not and I am going to lead my doctor to the wrong path...
I'm not sure which exams I should ask for (there is also a money issue...), and which exams are not really necessary and I shouldn't do even if he asks...
Aghhhh... Sorry... So much going through my mind (actually my brain fog went away...Maybe it's why I am thinking "too" much).
Any advise????
Thanks, thanks, thanks!!
[ 07. September 2006, 08:22 PM: Message edited by: rcs2 ]
Posted by lou (Member # 81) on :
That he uses a good lab will help and probably means he already knows which tests to order. My thought is that lyme and coinfections tests should be done, even though they are not air-tight. There aren't any tests for some species of these bugs. This is why clinical diagnosis is needed.
The usual coinfections include babesia, bartonella, and both kinds of ehrlichia/anaplasma. If there is any chance you were not bitten in the east, it might be necessary to look for another type of babesia too.
Posted by rcs2 (Member # 9663) on :
hi lou, thanks a lot!
Posted by bettyg (Member # 6147) on :
RC, so NO blood tests have been done so far correct?
You need to DOWNLOAD IGENEX's required form.
MD must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test. Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks!
Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes :
western blot IGM & IGG,
co-infection panel for YOUR AREA OF COUNTRY;
PCR WHOLE BLOOD
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
Let us know how it goes, OK?!
Posted by rcs2 (Member # 9663) on :
Thanks all!
I had an ELISA done for Lyme (negative). Pretty sure it was done in a local lab.
Yes, money is becoming a problem... I'm having a lot of expansive exams done and I'm paying deductable and co-insurance...
Did anybody you know was reimbursed (at least in part) by any health insurance??? It's hard to understand why Medicare will cover it while other health insurance won't...
Thanks
Posted by lou (Member # 81) on :
Your insurance may cover part of this testing. While this lab does not submit the claim for you, they send you a statement that you then send along with your claim form for reimbursement. Different kinds of insurances pay different amounts on these tests. HMO might not pay anything. You need to get very acquainted with the provisions of your insurance contract.
Posted by Lymetoo (Member # 743) on :
I have a PPO and I think they paid for most of my Igenex testing.
Posted by Vermont_Lymie (Member # 9780) on :
Hi rcs2:
For me it was important to write-up a history and list of my symptoms; to be sure not to miss anything. Since Lyme is a clinical diagnosis, the detailed history is important! Good luck with feel better -- VL
Posted by Andie333 (Member # 7370) on :
I agree about writing up a history -- symptoms you've had, doctors you've seen, medicine, etc.
I also took someone with me to my first appointment. First time in my adult life I've had another person sitting through an entire medical exam, but in retrospect, that was a really good decision for me.
After about 15 minutes, I was so Lyme-brained I started getting confused. Thankfully, I had someone there who was taking notes and keeping track.
Also, I had a notebook that i've taken to each of my appointments. That way I can jot down things my LLMD had told me, because, again, if I don't, I forget.
I'm glad you're seeing someone. You might also want to print out Dr. Burrascano's general Lyme protocol then just leave it with your doc if he / she seems receptive and is interested. I think it's got a lot of invaluable information.
Hope this helps; let us know how it goes!
Andie
Posted by Vermont_Lymie (Member # 9780) on :
Hi RCS2:
Andie's suggestions are great -- I have a Lyme notebook too. In addition to Dr. B's guidelines, you might want to bring the ILADS treatment guidelines. (Int'l Lyme and Associated Disease Society, you can google it.)
Also, be sure to include all your medical symptoms in your history, even ones that you do not think are associated with Lyme if they are notable. Nothing surprised me more than to find that my night vision returned after 5 weeks on antibiotics -- I had never attributed its loss in one eye to Lyme.
Posted by rcs2 (Member # 9663) on :
No words to say how thankful I'm!
I already have a sort of diary, because my symptoms can change every week, day, hour... And I noticed I had the tendency to think only about the ones I was having at that point...
Thank you all!
Posted by robi (Member # 5547) on :
quote:Originally posted by rcs2: He actually run tests through IgeneX and do clinical dx, but he is not a LLMD.
My problem is that I have been so sure I have Lyme that I am afraid that if it is not and I am going to lead my doctor to the wrong path...
If money is an issue I would go directly to an LLMD. Even thought the initial outlay may be much more, in the long run, you know you are getting properly diagnosed and treated. An LLMD will not DX Lyme if you don't have it. It is not automatic to get a Lyme DX if you go to an LLMD.
It is highly likely an non-LLMD will try to pin just about any other diagnosis on you besides Lyme.
If you read the issues around the politics of Lyme you will begin to understand why. (Too long to go in depth regarding politics here.)
Igenex, while useful, often can be non-CDC positive. A true LLMD will know what combination of specific bands and symptoms to look for to make a clinical diagnosis. I would not trust this to just a "friendly" doc.
I do not know the specifics around you or your doc. I just would not trust this to a non-LLMD. This is your life we are talking about.
Best thing is to see an LLMD ........ even if it will set you back $$$. Yu can make up for that when you are well.
My opinion, robi
Posted by rcs2 (Member # 9663) on :
Hi Robi,
Thanks for your posting.
I agree with you, but I'll give a shot with this doctor. I already haven an appointment.
Besides Lyme, he treats another chronic diseases, so this is why I said he is not a Lyme specialist, but he did dx a few people I have contact with. I am aware that most likely I'll have to see a LLMD at a point...
It's really frustating that we can't count on our insurance, I can't understanting how they can get away with it...
Thanks!
[ 08. September 2006, 03:49 PM: Message edited by: rcs2 ]
Posted by rcs2 (Member # 9663) on :
Hi everybody,
Thanks so much for all the informations!!
Just wanted to let you know that I called IgeneX and the exams are not that expansive as I thought. For the WB (IgG+IgM) they charge $190 ($95 each).
For my region panel they charge $515.
I think I can afford it (woop!!).
Will let you know when I get the results!
See you,
Posted by prismvision (Member # 9648) on :
are you sure about these prices??? i just paid $390 for western blots ONLY.
Heidi
Posted by rcs2 (Member # 9663) on :
I talked directly to IgeneX. They said that sometimes the doctor can make money (ughhh) on these exams, but if I am the one getting the kit, etc, I'm pretty sure the doctor would be ashamed to overcharge...
Sorry to hear you paid more, try to call them and ask for a receipt, maybe you can check that out.
That's not fair at all... We have to pay all these bills and appointments out of our pockets...
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