I came to this site 3 weeks ago when I removed a deer tick from my son. I had a western blot done by quest lab and these are the results. Everything on the iGM was negative. The i G G showed one positive band and the rest were negative. The positive band was 41 kDa. Can someone tell me what this means? Thank you
Posts: 14 | From New Hampshire | Registered: Oct 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
It means by the CDC guidelines he is negative. That doesnt mean he doesnt have lyme. Many of us have negative test results, that is why we are treated based on symptoms.
You also may have had him tested too soon. It takes awhile for it to show up.
Quest is not a very good lab for tick borne disease tests. Igenex is a lab that has many more bands for lyme.
Band #41 represents 'flagella' which is bacteria with a tail. It may not necessarily be lyme.
Perhaps you might want to check with a Lyme Literate doctor on what your next step would be.
Is he having or showing symptoms of lyme? Lyme can also lay dormant for long periods.
You can get all those symptoms from this board or review these guidelines by Dr. Burrascano, the top lyme doctor in the country.
Good luck and keep us posted.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Correct, the "negative" determination is certainly in question. A CDC negative is NOT at all accurate. Their manner of measuring has many flaws. Many.
Your son's future should not be decided based upon this faulty measure. You son needs a doctor who has experience.
I am so sorry that you did not have this information before so that proper testing might have been done. Your son may not have lyme but that certainly will not be proven by bad tests.
And once these tests are in his file, it will be nearly impossible for him to get further assessment or treatment from the doctor or the system you are in. Still, there is hope. Links below can guide you to a good doctor. Some LLMDs are on some insurance plans and a support group may guide you to lyme aware GPs that can work along with a LLMD.
Quest does not check for ALL the bands. Most labs do not. I hope you can find a doctor who can assess and order the right tests.
Did your son ever have a bulls eye rash? If so, no lyme test is needed but tests for other tick-borne infections are. Also, not everyone who gets lyme gets the rash. But if they do, that is clearly lyme.
As you can see from the Savely article below, tests are not the sole indicator. Reading this article will help explain the politics that have driven a wedge.
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.
- FULL ARTICLE AT LINK ABOVE.
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.
==========================
AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:
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:
Fry Labs also is said to be good for certain tests.
===========
You can see the Burrascano set of guidelines (he is an ILADS LLMD and that set has the most inclusive information) in the post above. A streamlined set is at the ILADS site - along with LOTS of good research articles.
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.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My LLMD says he has never personally seen positive band 41 for any other illness except LD. This is the only band that showed up for me on my Labcorp WB. I would say that this pretty much says LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Yikes, that concerns me that a LLMD is saying band 41 is lyme. It simply is not true....many, many healthy individuals have band 41...there is decent literature out there to support this. MOST LLMDs would never see band 41 and jump to the conclusion it is lyme....especially if no symptoms. The fact that it is IgG is even more encouraging.
Both my children tested positive for band 41 and both are healthy. I've run this by 3 LLMDs (1 considered to be one of the best) and all agreed there was nothing to worry about.
HOWEVER, just because your son has a negative test result doesn't mean he doesn't have lyme. If he was tested soon after he was bitten, the test will be negative. It can take 2-6 weeks for the body to elicit an immune response that can be detected by currently available tests.
One of my best friend's son was a recent example of this. Kid has been exposed, started getting sick, tested negative for lyme. Pediatrician refused to treat (even though his symptoms SCREAMED lyme). 2 weeks later he got a bull's eye across his face (pediatrician still refused to treat because his test had been negative). Meanwhile, coaching my friend through this (very frustrating experience)...she ultimately had another test done and this time it was screaming positive.
Did you save the tick to have it tested?? If not, I would defintitely keep an eye out for any weird symptoms and definitely have him tested again in a couple of weeks. If you could get your pediatrican to give a short-course of antibiotics, that would certainly be the most conservative route to go.
Sorry for the random babble...
Posts: 561 | From mass | Registered: Jul 2007
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posted
QUEST is notorious for MISSING Lyme. They do not even test for all the bands.
REad this and then read Dr C's WB explanation and ALL of the REPLIES to the original post.
VITAL INFORMATION ON BAND 41!!!!
From a seasoned poster:
the number of people exposed is in the millions. the reason you can't get treated is they have decided that only early disease merits diagnosis and treatment. the bacterium itself is the most bizarre human bacterial pathogen known, and is poorly understood. they don't know how many people are carrying a permanent relapsing brain infection. you can't get diagnosis or treatment because they have to pretend it doesn't exist and use labels like 'post lyme' and 'CFS' etc. for those who manifest illness.
Look at what steere did in his 1992 study which is the foundation for the CDC serodiagnostic standard. He and others often look back on this and refer to a 'normal' control, but in fact the control was taken from sick people...MS sufferers, CFS sufferers, in sum, conditions which could have been caused or complicated by late Bb infection. Moreover, he threw in 25 syphilitic patients which constituted 20% of the control. Hoever, syphilis itself has an annual US incidence of 3 per 100,000.
this statistical chicanery, which fudged the result at 41 kDa on Bb blot by many multiples, is significant, because syph serum will cross react at 41 kDa to Bb western blots. it allowed them to 'swift boat' the importance of the reaction to 41 kDa, which is the earliest and most consistent human ab response to Bb infection, being present in all stages as opposed to the rest of the proteins which are variably expressed according to stage, tissue type, even temperature.
Flagellin {41kDa} is necessary for Bb to survive under all conditions, and is constantly expressed, including in late CNS infection. Yet they chose to swift-boat this response.
why? it's for political and economic reasons. telling the truth about diagnosis and treatment results in mass panic and probable economic collapse/political revolution. it's likely a bioweapon. north american disease is different from european disease...lack of CSF antibodies, for instance. a much larger range of serum resistance to host species in wild{allows Bb to infect a much wider range of species, important in disease spread and maintenance in wild}. the CDC has found that Bb 31 goes intracellular in CNS cells.
Telling the truth threatens the careers and livelihoods of the very individuals who control this issue and who have actively lied and deceived and otherwise operated a scientific propaganda campaign for the past 15+ years, profitting from the campaign as they went.
lyme disease, which in the US also perhaps includes other pathogens notably a bioweaponized bartonella, threatens the entire establishment. if late disease was rare, we'd be able to get treatment. unfortunately, the EIS/CDC,DOD totally screwed this up and tried to make money off of the disease, making profitability their first priority as opposed to protecting the health of americans.
think about this...allen steere wouldn't listen to polly murray in early 90's when she reported a big incidence of neuropsychiatric disease in lyme. She had to call fallon. Now, fallon has overwhelming evidence of a serious disabling relapsing brain condition which is not easily treated. Global hypoperfusion on spect/pet ain't normal folks. Don't you think the CDC etc. should be breaking their balls trying to figure it out? Instead, we see nothing at all, only continued attempts to deny illness and obstruct treatment.
Obviously, they know what is going on, and have determined that the best course is to do nothing, to cover up, knowing that in doing so, they are condemning large numbers of people to perpetual diagnostic and treatment hell.
think about it. it's a horrific scandal and I'm not sure how much longer these *******s can keep control of it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I don't think 3 weeks is of long enough time for the body to
Try to post an immune response.
I think 6 weeks is the minimum and then still iffy.
Is your son receiving any meds at all?
I would be seriously considering getting this baby on some antibiotics now.
Better safe than sorry.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I think band 41 is a pretty good indicator, especially if the person is not feeling well and has a good amount of lyme symptoms and/or has been bit.
My only band was 41++ IgG positive. And that's the only band it's ever been... I am so extremely lucky though that my LLMDs took my symptoms into consideration and treated me on that basis because I was so extremely ill and have been getting better because of their care and treating me.
KS and I disagree on band 41. Sure, "healthy" individuals may have band 41, but who is to say that these "healthy" individuals are healthy (and don't have lyme whatosever)?
Many LLMDs are starting to believe that nearly 80% (if not more) of the population have lyme (for some, it may be dormant or just not giving people many symptoms, etc.). And I agree that most of the population DOES have lyme but has no idea.
posted
My son does not have a bullseye rash. He actually yet is displaying no symptoms. Our LLMD told us that 50 percent of the poplulation tests positive for band 41. If it is under i G G they dont treat unless he has symptoms. If it was under I G M then they treat.
Posts: 14 | From New Hampshire | Registered: Oct 2008
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adamm
Unregistered
posted
I'd tend to treat any tick bite as if it were a Lyme exposure--and if there were any doubt, seeing band 41 would seal the deal in an instant.
Seriously, The risks of the treatment for early disease (400 mg doxy/day for 3 months, or an equivalent course of amoxicillin if he's too young for doxy) are minimal, and there's no worse experience a human being can have than suffering from chronic Lyme. I'd do whatever it took to get him that medication!
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posted
I think my son has a penicillin allergy..he is 3 years old. in that case what are the next best antibiotics?
Posts: 14 | From New Hampshire | Registered: Oct 2008
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adamm
Unregistered
posted
I agree with disturbed--what portion of those you know would you actually consider healthy? Our is a nation of the disabled. For txment options--check out Burrascano's guidelines, which, I think, are to be found at the top of the board.
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