posted
Hi, all. I would love any information about PA doctors, especially doctors in the Philly area.
Also, I've been told to expect to pay $400.00/hour and that I'll have to order all my own tests from Igenex. Is this true?
I mean, I know insurance might not cover off-label prescriptions, but are there seriously no Lyme literate doctors who would order the new C6LPE if I asked for it? Or none that take insurance?
I know that if I have to travel far out of my area, my insurance probably won't cover me - but assuming there are LLMDs in my area, would none of them be primary care physicians?
check your profile above for my pm to you of penn llmds
sorry i couldn't read your long paragraph; please break it up into SHORT paragraphs and double space between each paragraph for us neuro lyme folks who can't comprehend or read it as is.
please use my guidelines below...
noticed you used an abbr. i've never seen before, please tell us what that stands for ....thx.
Welcome to Lymenet! I'm so glad you found us! You've come to the right place for education and support!
The following is some links that may be helpful to you:
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
This explains the medical politics around Lyme, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org
They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure to download Igenex's required form. MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.
Optional tests include: co-infection panel for your area of country and PCR whole blood
Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.
Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.
For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.
You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.
Go to left hand corner and mark box to receive `all replies', and click edit send.
Thank you for posting in a manner that makes it easier for all to read and help others.
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posted
Thanks so much! I just read the list - some of those distances/prices are feasible.
When you ask about the abbreviation, did you mean C6lPE? It stands for C6 Lyme Peptide ELISA.
I just read about it today. It's new, and supposed to be much more sensitive than the standard ELISA, even for people who've been undiagnosed a long time.
Thanks again, Tracy
EDIT: Oops, it isn't new at all. It came out in 2000. Wonder why it isn't used more widely.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Tracy, the best lyme doctors generally do not take any type of insurance. Every primary care doc or any other type of doc has the right to do that. Lyme docs often do that for many reasons. One is that the first appt with a good lyme doc will last 1 hour to 1 1/2 hours. Do you think any insurance company will reimburse the doc for that time?
ELISA tests are untrustworthy. So says the lyme guru Dr. Joseph Burrascano. Here are his lyme treatment guidelines:
I suggest you read and STUDY them to learn about the disease and how it is treated.
Here's what he says about the ELISA:
"The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. I therefore recommend against using the ELISA. Order IgM and IgG western blots-" (p. 7)
A good lyme doc will draw your blood and send it to Igenex at your first appt. They will do IgM and IgG Western Blots and may also do coinfection testing. That's what I prefer. If you want the doc to send the blood to Igenex, when you call for an appt, be sure to ask if the doc uses Igenex. Many don't.
Also, my insurance covered all my lyme prescriptions even though the doctor did not take my insurance. I submitted my claim for the doctor's bill myself and got some reimbursement that way.
I highly recommend that you try to get in with a doctor who follows the Burrascano protocol. That is the protocol that got me well and a number of my friends and acquaintances. When you call the doc's office, ask if he follows Burrascano. That's how you find out. If they say he does, still compare his treatment of you to the Burrascano guidelines because many docs SAY they follow Burrascano, but they really don't.
Wish you the best. Keep posting. We will help you and answer your questions.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
PM Sent
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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bettyg
Unregistered
posted
hi tracy,
you did a great job of breaking up your story for me/others to read; we thank you hugs
call igenex and ask them to send you a western blot kit to your home; it has RETURN POSTAGE included!!
if you are doing co-infection testings too, in same phone call ask for CO-INFECTION BLOOD KIT too be sent to you; this test is almost $1,000 UNLESS you are on medicare; then they file for you and it's almost free with under $100 you pay.
tf gve you outstanding and accuate info too good luck.
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