[ 04-01-2015, 08:21 AM: Message edited by: Mommabear ]
Posts: 21 | From USA | Registered: Oct 2014
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Was it an Igenex Western Blot? (probably not, as it sounds like regular insurance Dr. ordered the WB, therefore labcorp or Quest)
I think if you really want an accurate Western Blot to determine exposure to Lyme,
spend the $200-$250. to get the Igenex Western Blot kit mailed to you, take it to the Dr. to sign off, get your daughter's blood drawn/ send the kit in,
and get a copy of the results.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Thank you
Posts: 21 | From USA | Registered: Oct 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If it was not done at Igenex, all the bands would not have been tested. I certainly would not just assume this could be a false positive at all.
I hope you can have her tested with Igenex so that all possible bands will be considered. Other labs just leave them out so that lyme is more easily missed. they WANT it that way.
Tired all the time is a terrible, terrible life even if that is the only symptom (of course, though, a tired body is never just a tired body as so many other functions are affected, too).
I was tired all the time as a kid, teen, adult. Did not find out until in my 40's that I had lyme & 2 other TBD. As a kid, I had many tick bites so it's very likely lyme goes back decades for me. My life has been miserable in so many ways.
Please do not underestimate the chance for this to be lyme. The doctor may want to but please don't trust that doctor. Do not trust a test from a substandard, inferior lab. Get a better test.
Reasons for False Negative (Seronegative) Test Results in Lyme Disease -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- How long have you had lyme, is a question to consider as well. If longer than 10.5 years, she could have contracted lyme in utero.
Also about the IgM / IgG regarding chronic / recent / current / past / persistent puzzle.
there is nothing at all about either IgM or IgG that has them report only from any certain point in time. It could be recent or from before birth regardless if from an IgG or IgM test.
Lyme breaks all the rules in that way, can serve around time, so to speak. Any one band, at all, from any test - along with the horrendous symptom of fatigue - is certainly worth getting better testing but also input from an ILADS educated LL doctor for their may be some symptoms that are not so apparent.
Any doctor that does not move heaven & earth to help figure out why a child is tired all the time has zero - zero - business offering any advice.
Any doctor that settles for tests that do not test all the lyme bands also has zero business being a doctor, IMO.
Sure, there can be other variables here either instead of or in addition to lyme (gluten, cell phone exposure especially at night, endocrine disruptors, etc.) but the question of lyme cannot be just brushed aside and that doctor wishes to do.
and fatigue deserves much more serious attention by doctors in general.
Babesia is also high on the list regarding fatigue.
Good luck. -
[ 03-09-2015, 06:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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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: 96222 | 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: K MD., appearing on the website of Dr. S of Florida. --------------------- ***Note from Michelle: actually bands 18 and 30 are considered specific to Lyme as well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Doctors that may be just great in most things can be totally inadequate where lyme is concerned.
They often don't even know that, themselves.
Rerunning a test from an inadequate lab is not likely going to obtain different results when they do not report on all the bands, when their staff has not been properly trained and there are so many other factors involved.
Igenex web site will detail how their tests are done. And it's not just the test but also all the other measures as well as their staff training - many factors where other labs just don't measure up. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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