posted
I went to their site and I'm seeing that you can order a panel of tests.....is this expensive? I'm confused about the whole thing. It sounds like it includes a lot of important tests, so I'm interested, bt I don't really understand how it works? Thanks..
Posts: 9 | From NY | Registered: May 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Julie, do you have a LLMD yet? If not and you can get a doc to order one for you, a good start would be the Igenex western blot (igm and igg)....I believe they are tests 188 and 189...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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bettyg
Unregistered
posted
LABS ... UNDERSTANDING YOUR TESTS FOR VARIOUS ILLNESSES! 11-07
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; INCREASED MAY 2008 * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive! * You need 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. Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones! * Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below! http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077
Marc G. Golightly, Ph.D. added info 4.25.09 Professor of Pathology Director and Head of Flow Cytometry and Clinical Immunology, Dept of Pathology School of Medicine Stony Brook University
Dr Kilani -- the director of Clongen Lab 1232 Middlebrook Road, Suite 120 Germantown, MD 20874 Phone: (301) 916-0173 Fax: (301) 916-0175 Email: [email protected] Customer Support [email protected] Web Master [email protected]
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Julie,
If you have symptoms of Lyme and know you have had a tick bite I think you should consider seeing a LLMD.
Even if you don't remember seeing a tick on you, if you live or have traveled in an endemic area I would still consider Lyme.
I am not sure which test to suggest you order, but a LLMD would advise you best.
For Bartonella testing my LLMD prefers Fry Labs.
I can't remember which Igenex I had done two months ago, but it was about $950, I think. My niece just had one done for $920.
For Bartonella testing my LLMD prefers Fry Labs.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Most people start with the western blot IgG and IgM, as stated above...test #188 and #189...total cost $200.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Thanks everyone. No, I don't have an LLMD yet, I'm just suspecting I may have lyme so I haven't gotten that far yet.
Surprised at the cost of the tests, does insurance not cover this? I can handle the $200, but anything more would be tough.
Also, does anyone know how you find out if your area is endemic? I am in Upstate NY (outside of Rochester). I don't remember a tick bite, but I did play in the woods a lot as a kid so you never know.
Posts: 9 | From NY | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
=
Insurance does not cover tests at the good labs. Most labs do the wrong tests, the wrong way and with not all the necessary bands.
Still, tests are not the best way to go at first, in my opinion. If you have only money to either see a doctor or get tests, I'd see the doctor (most LLMDs are not covered by insurance since insurance companies will not reimburse them for long appointments).
If you see a LLMD, the advice you gather will serve you well. If you get a test, the results are likely to be inconclusive.
------
While NY state is endemic, it matters not if someone lives in an edemic area if they are sick. One can become very ill in an area reputed to have no ticks at all (but we all know ticks are in every state).
If you suspect lyme, I'd put the money towards a good LLMD who is also an ILADS member.
There is more than lyme to test and the LLMD may direct you to some of the tests for coinfections if he suspects lyme is a problem.
And, not everything is lyme. So, that is why it's best to first have a physical evaluation and history with an expert who is familiar with all the tick-borne infections or some of the other chronic stealth infections, too. Mycoplasma, Cpn, HHV-6 are also things you can ask the LLMD to consider. See Timaca's thread all the way down in the next set of references.
Apologies here for dumping a lot of material. In efforts to cover all the bases, a slew of balls have been tossed your way. You can just copy this to a computer file for reference along the way - or at a later date.
IMO, it is vital to read each of the links so that you have a basic understanding of the topic. It's a lot but it is so very important to have some of the facts so that you can proceed and succeed. And, if you have some of this reading under your belt, if you do consult an LLMD, you will save a bunch of money by his/her not having to cover the basics.
And, on the flip side, perhaps reading nothing will be less stressful and you won't be trying to figure all this out - and present with a a clearer and "clean" picture for the doctor.
It has taken me years to read some of this stuff - but, with no doctor, I had no choice. I'd rather have had good integrative medical care available as that would save YEARS here.
So, please - please - do not be fooled by thinking that reading can replace the doctor. It is invaluable to have the eyes and ears of someone who has seen and treated thousands of patients.
Now, as you say you are limited in funds (as most here). But, if you see a LLMD and get expert opinion, there are various ways you can proceed once you have a better idea of what you need to address.
You may also be able to find a lyme friendly doctor (on your insurance) to back you up with tests, monitoring, etc. The area lyme support groups and your (new) LLMD may have a few suggestions for you.
Good luck - and - if you take excellent care of yourself and you'll be on your way to good health soon.
-
[ 05-10-2009, 03:54 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
-
These first 3 posts may not mean much but, after you read a bit, you'll see that getting proper diagnosis and treatment has been very difficult for lyme and TBD (tick-borne disease) patients. You might just want to glance a the top three treads to get an idea of what is being done to help change that.
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.
================
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:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
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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