posted
Hi I just got back test results from Igenix, my regular md said based on the results that i don't have lyme. SOme bands are positive, and I just wanted to know does this mean I do, or don't have LYme, I just found out Im pregnant, and don't want to worry about Lyme.... the following are the results : WEstern blot IGM all bands Neg except 31 + 34 IND 41 + WEstern blot IGg all negative except 31 IND 39 IND 41 ++ I also had some serum test neg ..PLease help do these bands mean lYme or no lyme?? My symptom is muscle achiness last 6 months. thank you so much
Posts: 21 | From queens, new york | Registered: Jul 2008
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posted
I just got an explanation from my daughter's pediatrician on band 41, which is the band that most comes up positive for lyme titers. He said it could come up positive for a number of reasons, not just Lyme. I read that taking antibiotics can bring new bands out if it is Lyme, but I realize you don't want to take anything while you are pregnant. There are natural antibiotics like Mangosteen juice. When I drink it I have a herx reaction because I do have Lyme... you might want to try it out and if it makes you feel much more achy it might be a clue that you are really positive for it. That would be safe if you are pregnant I imagine.
Posts: 144 | From Connecticut | Registered: Sep 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
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Go see an LLMD. You have + on band 31 (missed that the first time I looked at your post as it's up in the paragraph instead of with the other numbers ). Band 31 is specific for Lyme. 41 is not Lyme-specific.
You may or may not have Lyme. With your WB, I'd say it looks like you have definitely been exposed to Lyme. An LLMD will review your symptoms and decide whether you have an active disease.
Don't do nothing! You need to be proactive to protect not only yourself from getting sicker, but your baby from contracting it. You can get on Zith and Amoxy during pregnancy.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Protect that baby!!!! Your WB is VERY suspect! Bands 31 and 34 are very significant and if that 39 was "+" there would be NO question you have Lyme.
Find an LLMD ASAP so you can get on antibiotics for that baby, if not for YOU.
According to Dr C in his WB explanation, these bands are important:
"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Many good and sincere physicians have been trained to perceive Lyme testing falsely, and some are even infectious disease consultants.
Lyme is a very sophisticated bug. It is partially related to the bug that causes syphilis. There are literally well over a dozen reasons for missing the diagnosis.
First, that bulls eye rash is a good sign you have it. But many other "bite" patterns or rash patterns can also be Lyme. In fact only 1/2 get any kind of mark or rash. And only 25-50% have the popular bulls eye rash. Sometimes a bulls eye rash is not on a part of you body you easily see and so is missed.
1. Lyme can hide by a number of ways from your immune system.
2. If your immune system is not tuned up and working very well you can be found fully negative on multiple lab tests.
3. Most tests for Lyme are antibody tests. Antibodies, also known as immunoglobulins, are proteins that recognize something foreign in the body like infecting bacteria and help remove it. The first and most common test your doctor usually orders is an ELISA antibody test. Again, if the Lyme is hiding well or your immune system is fair, you will come up normal.
Specifically, the ELISA test missed 56% of confirmed Lyme patients (Archives of Internal Medicine 15:761-0763, 1992).
In another study, it was in some ways worse. In this one the ELISA test missed over 70% of people with early Lyme disease, and 46% with late manifestations of Lyme. (Laboratory Medicine 21:299-304, 1990). Meaning, it missed 70 out of 100 people with the early disease. But it was still negative after the bug was in the body for a long time -- still missing 46 of 100 seriously infected people.
4. For some, the Lab is a place of perfect science. A place which has purely objective fact. In Lyme this is not valid. In one study, 55% of the labs could not accurately identify blood samples with Lyme, which led to the conclusion in a prestigious infection journal that: screening tests for Lyme disease are not adequate (Journal of Clinical Microbiology 35:537-543, 1997).
What About the Western Blot? Is That Definitive?
The Western Blot is merely another antibody test. However, it is more specific than the ELISA. The test can test for 25 possible "bands" that relate to parts of Lyme or other infections.
But the routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs.
Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples.
For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990).
1. Most physicians are taught to do the ELISA first. If that is positive then "confirm" with the Western Blot. The big confusion is that this is not a way to diagnose. It is the CDC's way of generally tracking the movement of Lyme in locations and states. It is not a way to determine whether you, personally, have Lyme!
If you use the Elisa first method with the confirmation Western Blot, you miss massive numbers of individuals with Lyme (Journal of Clinical Microbiology 34: 10-9, 1996). From this two-stage approach, you may have a sense that Lyme is entering your state at an increased rate, but that does not address your individual concern.
2. The CDC guidelines seem to express clearly to me that these two lab tests were never intended to be the final measure of whether you have Lyme. They report the main diagnostic criteria are what you report to your doctor and what they find on a physical, i.e., "clinical findings." (http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm)
3. Another government agency, the conservative FDA, has issued a bulletin explaining that a person may have active Lyme disease and yet may have a negative lab result. Meaning, diagnosis should be based on the history of what happened to you -- symptoms, exposure to the tick and physical findings (http://www.fda.gov/medbull/summer99/lyme.html).
4. Congress and the President have felt that negative labs have been used to keep people from needed treatment. United States Congress Public Law 107-116 explains that labs that are negative have no relation to Lyme diagnosis in a person and refers to the CDC that lab monitoring and testing with Elisa and Western Blot was "developed for national reporting of Lyme disease: it is not appropriate for clinical diagnosis."
Some bands may be fairly specific to Lyme: 12, 22, 23/25, 31, 34, 35, 37, 39, 83***
Finally, some feel the PCR test is the best test. Most PCR tests are performed by laboratory which almost never find it in positive people. However, the PCR test should be done by IGeneX, Medical Diagnostic Labs or another tick disease specialty lab, it is fairly useless. PCR testing can have a false negative of 30% in those with positive Lyme. It is also good to test the PCR from blood serum, whole blood and urine, so they have more ways to look for the illness.
These are excerpts from a book in manuscript by: Dan Kinderlehrer, MD., appearing on the website of Dr. Schaller of Florida (publishes free articles at personalconsult.com). --------------------- ***Note from Michelle: actually bands 18 and 30 are considered specific to Lyme as well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Remember, a negative test does not mean there is no lyme. The CDC criteria can say "negative" on tests that still clearly indicate lyme is present.
ANY positive band is cause for further evaluation.
And, even with a negative test, a clinical evaluation may find evidence of lyme.
1. Have you recently had an attached tick?
2. Have you EVER had a bulls eye rash ?
3. Symptoms - you say muscle aches past 6 months. Anything else? Sound or light sensitive? Vertigo?
4. Have you been pregnant before so that you might be able to compare symptoms you are having now in regards to pregnancy?
Based upon the test results, I think it would be safest to consult a LLMD as soon as possible.
Be sure to tell them that you are pregnant and how far along so that you might get in for an immediate opening.
I can't say for sure but you should be evaluated by a true lyme expert. Tests are not everything but yours do indicate that a consultation is in order. Co-infections should also be considered.
If you do have lyme, many women have given birth to heathy babies. Of course, as you know, exact medical care is necessary.
This is surely scarey, just remember: Knowledge is power.
International Lyme and Associated Diseases Society
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Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
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:
" . . .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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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AFTER reading the Savely article (link above) this will make more sense - it explains why some doctors are in the dark if they just blindly follow the IDSA (but nothing explains why some choose to stay in the dark).
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.
HI, Does anyone know of a good LLMD in NY area, Manhattan, Long Island, Or anywhere close, I am willing to travel to the right person, I have beeen sufferring for a long time,
My regular MD did a lyme test and it was Neg, he therefore ruled out lyme, but I feel very achy and tired, and was in a tick infested area in Fire Island NY last summer, and I think I need to go to a Doctor who understands lyme .
Thank YOu SO much...
- end July 7 post, which was her first here.
FIVE other identical threads were posted by Moongirl yesterday: Aug. 14. -- All with identical text - but each has a different headline.
-
from the original post of July 7, in the ``seeking doctors'' forum,
a few PM's were sent with doctor suggestions and info. to support groups was given.
As there is no response to any of the six total threads:
Moongirl,
I hope you have seen the responses and that you are finding your way with all this.
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). Band 31 is specific for Lyme. 41 is not Lyme-specific.
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