posted
Sorry for the newbie questions, but hopefully someone can help me understand. I'm kind of burnt out and tried to read but don't have enough answers.
There is not an LLMD near me, so I want to just get my local doctor to order tests as my first step. So I better have around $300, and not expect any reimbursement (but I'll probably submit just in case)? Seems like IgeneX would cost a bit more than the other labs, but I'm sure everyone here would say just go with IgeneX. So if I call them up they will send a free test kit, then I get the doctor to sign and put diagnosis code, and then I figure I have to go to a place to get the blood drawn (or get it done at that doc's office), and then I mail the kit and wait for doc to give me results?
I think there's a good chance I do not have Lyme at all, so to start I just get their one basic "Initial Lyme Panel"? I guess people here will say to get the "Complete Initial Lyme Panel" -- how much more does this one cost? Then if my Initial Lyme Panel is negative I could order the urine test especially after I am on some antibiotics, if I have the money and energy for this?
And is it true that even if I do not have Lyme that shows up on any tests, I might still have some other tick-borne infection? If so, then I should test for those now too (Panel 5090) or are they less important, or is there any reason to wait or not? I know I read about Fry's Lab being cheaper on those but if I can spare the money now then I better do it all at once? I know that later on I won't want to have to go get the doc to sign again, and send in the blood again elsewhere. Should I get it all done at Fry's?
Is there anything else I need to consider and know right now?
I am figuring that IF my results from the good lab come back positive, THEN I could start seeing an LLMD. But otherwise I could save on the travel, effort, money, stress of going to see one. I know that these lab tests being negative aren't completely certain and are only 95% accurate or so, but I am thinking I will just forget about Lyme (at least for a year or few, and pursue other avenues) if they come back negative?
Also even if the testing comes back negative, I think I might attempt antibiotic courses anyway (through a doctor) so then I might cure the "hidden" Lyme anyway?
Thank you.
-------------------- Sick since childhood, a long time ago. Posts: 15 | From Midwest | Registered: Mar 2009
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bettyg
Unregistered
posted
seeking, a few lines before i sign off to sleep.
if you go to my newbie's package links, go to the very END of ALL REPLIES; i posted recently the current charges IGENEX and all the specific testings they do.
seeking, what state are you from? if i asked before ... sorry; i talk to over 100 folks daily...
my brain is tired; heated to bed, but wanted to let you know where $$$ costs are for igenex! good luck.
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posted
Thank you, I looked at the price list you posted.
-------------------- Sick since childhood, a long time ago. Posts: 15 | From Midwest | Registered: Mar 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You said: " . . .I am figuring that IF my results from the good lab come back positive, THEN I could start seeing an LLMD. . ."
Yes, it might be helpful to have the test. But a negative, even from Igenex, is not the end of the line.
Tests are not fool-proof. If you have symptoms and if you could have lyme, you need to be seen in person for a clinical evaluation and then tested.
If you go ahead and do the Igenex testing, you do not mail the kit back to them. Be absolutely - absolutely - certain that whatever lab to go to for the blood draw - that they follow all procedures precisely. They will have the Fed Ex driver pick up the kit.
If any step is not done correctly, it can ruin the test results.
Also be sure that you get this done on a Monday or Tuesday. It's best early in the week and later in the week will not even be accepted by Igenex. Call them for details.
You said there is no LLMD near you. Can you call the closest one and see if they might recommend someone. Your local support group may know of a lyme friendly doctor.
Sorry, I'm a little fragmented right now and could read all your post but these points came to mind. Good luck.
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[ 03-30-2009, 02:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You also said: " . . .Also even if the testing comes back negative, I think I might attempt antibiotic courses anyway (through a doctor) so then I might cure the "hidden" Lyme anyway? . . . "
Please do not do that unless your doctor has read all the ILADS authors' works and guidelines. Haphazardly treating lyme can actually make it worse. The spirochete (lyme's bacteria) is very unique and does not act like other bacteria most doctors know about. (more about that in the guidelines posted below.)
And - there are many other chronic stealth infections beyond those from ticks. Not all LLMDs know about all those, but the best ones will.
See the last post of the next group of links. Some labs links are there, too. I know this can be overwhelming, but with one step at at time, you'll find your path. Good luck.
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[ 03-30-2009, 02:48 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
This explains why it's best to see an ILADS-educated LLMD. However, after reading the article, it will help you find one who is more open. If you ask first if they follow the IDSA guidelines, you know to move on. Again, this explains some of the politics at work:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .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.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
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. For lyme, be sure a lab will test all the bands on a Western Blot test. Most labs do not.
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.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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