posted
What's a good blood test to get a positve with lyme? Very confused, because was diagnosed with lyme 3
yrs.ago and new infectious disease dr. saying
blood came back negative. How can I figure out if she did the right tests? Any info would be great Posts: 24 | From lymeland | Registered: Sep 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
None are good. The WB is your best bet. Call and ask what test they did. If they say an Elisa or EIA, then those are totally worthless. Even with a WB, they still miss about 60% to 75%of Lyme cases.
Many people get an Igenex WB done because they supposebly have a better accuracy rate.
I am sure someone will come along with more info on getting the Igenex test.
Best bet in my book, is to go to a LLMD and get a clinical diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You asked how you can find out if ID doc did the right test. The answer is, call the doctor's office and ask for a copy of the test.
Then, post your test results here and we will interpret them for you. Be sure to give us the name of the test along with the results as they are printed on the report.
Many of us have been told our results were negative and they really were positive. No joke.
You can't trust the ID doc to read the test properly. They are biased toward saying your test is negative for lyme.
By the way, WB stands for Western Blot.
Posts: 9931 | From Maryland | Registered: Dec 2007
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How long have you been taking antibiotics, and what improvements have you experienced so far?
I was trying to determine this from your other posts.
I take it you have experienced herxing, right? Your body's reactions can tell you a lot.
Posts: 175 | From SW PA | Registered: Mar 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I would think that the doc you saw ordered a WB.
Do you know of the lab that your ID doc uses?
Around here it's standard Quest Diagnostics or Labcorp. Both are HORRIBLE!
I would suggest maybe getting blood done through Igenex.
Like mentioned above the testing is horrible for Lyme, it's a crapshoot.
Have you been tested for Coinfections???
Best of Luck!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I would not hire your infectious disease for any more appointments.
It's more important to see a good LLMD (one is is affiliated with ILADS) first for a clinical evaluation that will consider many things in addition to lyme. You need someone who has experience to look at the big picture.
Be sure to see what this author says about tests and about infectious disease (ID doctors) who go by IDSA guidelines:
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:
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:
posted
I've been on antibiotics for about 8 months, still have dizziness but numbness went away and most of other symptons. The infectious disease dr. ordered western blot at Quest lab. I don't know if she tested for co-infections I have to ask for a copy of my blood work and find out what I was tested for,good idea TF. How come infectious disease drs. don't really know about lyme and co-infections? Isn't that what they specialize in? I thought they were suppose to be more knowledgeable than other drs. She was pretty much saying that LLMD's try to steal money,because insurance doesn't cover alot of times. And that they would say anything to make someone believe that they have lyme.
Does anyone know a good LLMD in PA? The one dr. I was seeing before isn't even a certified LLMD, he's a regular family dr. he did all the research himself about lyme. Does that sound strange?
Posts: 24 | From lymeland | Registered: Sep 2008
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lymeloco
Unregistered
posted
DOCTORS IN MA DON'T ORDER W.B.. THEY GO BY THE ELISA.. MA IS KNOW AS THE M.S. CAPITOL OF THE WORLD, SO FORGET ABOUT A POSITIVE TEST.
IF YOUR ELISA LOOKS POSITIVE, THEN THEY'LL DO A W.B.. BUT DON'T COUNT YOUR CHICKENS BEFORE THEY HATCH!
IT SHOULD BE CLINICAL WITH POSSIBLEY A BLOOD TEST TO BACK IT UP.
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
LH, Yes, ask for a full copy of the Quest Labs test & post it here. She probably ordered/recieved both Western blot tests... the IgM & IgG.
Problem with Quest, besides not being as sensitive as IgeneX, is they only test a few bands on the IgM portion. Not anywhere as many as IgeneX. Every Lyme-specific band is a clue.
My PCP used Quest prior to diagnosis & abx. My LLMD ran some blood thru IgeneX a bit over a month later.
The latter results were as if you'd "turned up the contrast & brightness" on the Quest readings! They matched band-per-band quite well. This was in Nov/Dec of 2005.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
There is no such thing as a "certified LLMD." The medical profession does not recognize lyme disease as a specialty.
So a lyme doc can be a family doctor, an internist, or any other type of doctor who has on his own studied lyme disease and learned how to treat it.
Infectious disease docs are the medical specialty that is SUPPOSED to specialize in lyme disease. But, they have chosen to specialize in not finding lyme disease in people.
Lyme disease is at the center of a medical war. There are 2 camps. Our camp is the one that is full of people who have lyme disease, or have had it, and know the truth about it. Lyme doctors are often doctors who had lyme disease themselves and found out the truth. Now, they know lyme disease is an epidemic and that chronic lyme disease (sick for at least 1 year) is difficult to get rid of. They know that at least half of the people with lyme disease never saw a tick or a bulls eye rash. They know that the lyme tests are not that accurate. They know that a person must be diagnosed with lyme based on their symptoms, not any lyme test.
The other camp is the rest of the medical profession who are being told that lyme disease is very rare, we are crazy people, and our lyme doctors are trying to steal people's money.
You have to decide who to believe.
Haven't you looked at the video done by the Boston TV station in which so many people were tested and told by doctors that they DID NOT have lyme disease, and they finally got their lives back by pursuing the lyme diagnosis anyway?
It also shows how the medical profession is persecuting the docs who are treating people for lyme disease with long-term antibiotics. These docs get taken to court and have to defend their medical licenses. That's the chance they take for treating us until we are well--bankruptcy and loss of their livelihood.
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