I have been to numerous drs. over the past 2 years. 3 regular drs, 2 neurologists and so on. All tests normal. My dr handed me a card to see a shrink
I finally made an appointment to a natropah dr.
Maybe somebody will do a western blot test...or they'll hand me a card to see a shrink....
I'm so sick of not feeling normal....I dont know what its like to feel normal anymore.
I have to admit its better than it was last year but nothing close to normal. It wax and wanes.
Any advice? What test should I ask for? I do know tests are not accurate.
Should I ask for western blot, co-infections, and bartello? I have had a petecia spot before and sometimes they pop up(red dots that dont bleed out when pushed).
I also have strange little red cherry marks sometimes???
Posted by Ocean (Member # 3496) on :
Hi Mindy,
If I were you, I would call Igenex and ask for the blood test for Lyme.
They will send it to your house and you can take it with you to your appointment. Ask him/her to order the basic IgG and IgM (it is $200). I would not waste money on the co's for now. I did and they were all negative, but my first LLMD thought I still had them anyhow!
Is this a lyme literate ND ? There are a couple in your state. One or two even a member of ILADS.
If not, I'd cancel and see only one who is LL. Seriously, just as with most MDs, very few NDs are truly LL.
They will know what tests to do then. You should not have to be your own doctor if you find one of the ILADS LL NDs.
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Posted by AnnaL (Member # 18464) on :
I know of two LLNDs in Seattle...PM me if you want their contact info...
Posted by mindyandy420 (Member # 19257) on :
I looked upt the LLND's in Seattle and they dont take insurance. I am moving out of state in April and cannot afford to see them.
I'm stuck in a rut.
Posted by AnnaL (Member # 18464) on :
While the LLNDs don't take insurance, you can still take the bill and submit it to your insurance company.
My LLMD (who works with one of the LLNDs in Seattle) doesn't bill insurance. So I pay him, then submit my claim. My insurance usually covers about half of the the cost.
It's not perfect, but after seeing numerous MDs and NDs, I realized that the only way I'd get well was to see someone LL. Beg, borrow, sell your stuff. It's worth it.
Posted by Keebler (Member # 12673) on :
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I understand your situation. You might call the LL ND office that Anna suggests and see about their fees - and if they might be able to direct you do someone else who may be LL.
I guarantee, if whomever you go is not LL, it will be a waste of your time and money.
Bastyr Univeristy has a clinic - sliding scale, ask. They have, at times, had NDs on staff in their clinic who were LL and even an ILADS member. ASK.
BASTYR UNIVERSITY is in the Seattle area. It is a college of naturopathy - but, again, not all NDs have a clue about lyme.
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In the meantime, here are some educational sites that may be of help:
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
She is an ILADS member and a ND (naturopathic physician), so she has knowledge of the unique nature of the spirochete and what is required but also knows all about supportive techniques.
Alternative Treatments for Lyme Disease and Co-Infections
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[ 02-28-2009, 10:20 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
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Backing up, you had asked about testing:
TESTING
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
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Posted by bejoy (Member # 11129) on :
Oh my, all such very good advice!!!
Posted by AnnaL (Member # 18464) on :
Yes, some Bastyr NDs know about Lyme...but certainly not all. I went to the Bastyr Clinic in Seattle numerous times while trying to find out what was wrong with me. No one mentioned the possibility of Lyme.
I'm sure someone there will sign the testing paperwork for you, but it's a good chance they will not be LL.
![[Frown]](frown.gif)