posted
Well the reason I ask this is because my DR told me that it really doesnt mean anything .
She said it could have been any kind of bacteria .
But if it was why would it show up on a test that is specific for lyme ?
All my symptoms fit lyme , but the Dr.s really make me second quess my self . deep down I feel that it is lyme .
But i keep running into brick walls it is very upestting to feel that no one belives you .
Posts: 36 | From south carolina | Registered: Mar 2009
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sutherngrl
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It couldn't be just any bacteria. It would have to be a bacteria with a flagella(not sure of spelling) because band 41 represents the flagella or the tail. Only a couple of bacteria have this, the spirochete being one of them.
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disturbedme
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posted
You're going to get a lot of mixed answers.... if you do a search, you'll come up with hundreds of posts about this band and people saying that it means nothing and some people saying it means lyme, etc.
If you have symptoms that fit lyme and you feel that deep down you have lyme, then I'd definitely get it checked out further. See a LLMD, get tested through IGenex, do all you have to because only YOU know how you feel day in and day out.
Band 41 is the flagella of a spirochete. Which means there is some sort of bacteria in your body. It used to be that 41 was ever only said to be three things... lyme, gingivitis (gum disease), or syphillis. Of course NOW, it seems like everyone AND their brother are saying band 41 is present even in healthy people or in co-infections or in people with a cold or... get this, if you're having your menstrual cycle, band 41 can be present.... don't ask me how that works though because that makes NO sense to me.
I believe band 41 means a lot more than most people give it credit for... but that's just my opinion and I know a lot of people here would disagree with it.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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sutherngrl
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I agree with the above. I only have band 41 and my LLMD says it is significant. He said he has personally never seen it show up in any other illness other than LD.
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disturbedme
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yeah, it was my only band as well.... talk about really doubting your diagnosis... I doubted and still sometimes do.
The only reason I don't doubt as much anymore is because I am getting better slowly on treatment.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Thanks disturbedme i printed that link out and im going to highlight some points and take it to my doc.
I think that drs take the ignorance is bliss thing to a whole new level!
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sutherngrl
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Crazy! Yes it does! It just goes back to how you feel and what makes the most sense to you. Lyme makes more sense to me than anything else so that is what I went with.
Sometimes after a few months of treatment, you can re-test and more bands will show up. If you feel that you need confirmation later you can always do that.
The fact is that the test for LD are so inaccurate, that relying on them for a diagnosis is actually not a good idea. The diagnosis should be made clinically. We put to much emphasis on the test. The fact that you got a band 41 is pretty good. Many times the test come back totally negative; and that still doesn't mean you don't have LD.
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Dekrator48
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Was your western blot from Igenex?
What are the complete results?
-------------------- 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
I only had a 41+++ and a few IND. I have been in treatment for over two years and don't feel much better. I personally believe I don't have Lyme.
My sister had her test done through Dr. D in Mass and came back with a 41+. He told her it did not indicate Lyme.
She was finally diagnosed with MS 2 years ago and is doing great with medication. Much better than I am and she was much worse off than me.
So I guess I am saying if you have Lyme symptoms and only a 41 then treat it and see if you get better.
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disturbedme
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Uhhhhh... MS, huh?
I don't know what to think of that..... that definitely does not make the 41 only banders feel very good....
Kim - you probably have lyme... not everyone feels a difference in two years, unfortunately... some people are in lyme treatment for five years or even 10.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
My first Western Blot through Quest Labs showed only a "41". My neuro said "Probably just a false positive" and dxed me with MS. Over the next year I declined.
I had a more definative Western Blot run through a lab that specializes in tick borne illness, and it lit up like a "lime" colored Christmas tree. Bottom line: if you can, get a better WB.
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sutherngrl
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My WB was done through Labcorp. My LLMD is satisfied with the results and with how I presented with my illness, with flu like symptoms, followed by fatigue and pain and all the neurological stuff that comes with LD. I basically have a clinical diagnosis.
LD makes sense to me. MS doesn't. Do you just wake up one morning ill for no apparent reason??? MS has no known cause, but there has to be a cause. Therefore LD makes more sense.
I understand the doubting though. I have had a few moments of doubting, but I always go back to what makes the most sense.
If an Igenex test will help you have less doubt than do it. They have a couple of bands included that aren't included by other labs. Still LD is a "clinical diagnosis" according to CDC and ILADS.
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posted
Mine was done through labcorp also
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Keebler
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posted
-
If you have symptoms, you need to be properly assessed by an ILADS-educated LLMD.
Do you go to doctors who are not educated about this. It is a waste of your time, money and further puts you at risk of not only bad doctoring but also of having same nasty labels land in your file.
I do caution not to assume it's lyme, however. But only the very best level of LLMD can help sort this out. While you say: " . . .deep down I feel that it is lyme . . ." my sense is that, deep down, you know something is very wrong. A good LLMD can help you figure out what that might be, even if not lyme.
While you seek out a true expert, you can go over your self-care and see if there is anything there that might be contributing to your symptoms (but that test does dictate that you have follow up care).
Be sure to avoid all artificial sweeteners and MSG (google for all its names). Avoiding processed foods, sweets, alcohol, etc. is an excellent idea as it taking really good care of yourself.
Getting a good night's sleep is vital. Rest as you need it but also do some gentle movement/exercise (but no aerobic exercise until you see your LLMD and discuss that).
Be sure to read the Burrascano guidelines and the Singleton book and go ahead and add some of the vitamins and support supplements - especially magnesium. Low magnesium can cause many of the same symptoms as lyme AND also make lyme symptoms much worse. You may get some relief with supplements as it can take a while to get in to see a LLMD.
And, at the time you make your appt, you might ask them to go ahead and send patient care and diet guidelines and what supplements might be best in the meantime.
Olive leaf extract and allicin are the top two that I would ask about (in addition to the B-vitamins, calcium, magnesium and fish oil).
Keebler
Honored Contributor (25K+ posts)
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posted
-
Do you have memory of every having a bulls eye rash following a tick bite? Of any kind of rash after a tick bite? (Not all lyme patients experience a rash, but a bulls eye is a clear indication of lyme)
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.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
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:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
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:
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Yes, a healthy person can have Band 41. However, in the context of a patient that is extremely symptomatic with a systemic illness for which there have been no explanations, it's not at all unreasonable to investigate Lyme Disease exhaustively -- because it's often a sign of the illness when band 41 is present and the person has no answers after thorough searching and has excluded a vast array of other things.
Further investigation may yield more evidence.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
lymesc,
Please take note : My first western blot was done through LabCorp and showed only band 41.
One month later I had a western blot done through Igenex and had plenty of bands show up....see bottom of my post for results.
Igenex tests for 14 bands on IgM and 14 on IgG.
LabCorp only tests for 10 bands on IgG and ONLY 3 on IgM!
PLUS, Igenex includes many species of Borrelia bacteria in their testing methods (there are at least 100 strains in the US).
Other labs only include a few strains in their testing methods, so detecting an antibody to a particular strain is difficult at those labs.
Do not dismiss the idea of lyme when it is a very good possibility and can be treated.
-------------------- 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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Keebler
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posted
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I see from another current thread by lymesc? some background information that might be helpful to those who reply.
Well I have been on antibiotics for the last 2 months .
Thankfully alot of my symptoms are under control or gone .
But since the antibiotc treatment i have had a reacurrence in the symptoms about every 3 weeks.
The symptoms are not as bad as they were but when this happens the dizzyness is HORRIBLE!
And now I have this annoying twitch in my eyelid over my right eye!
Am i getting better ?
The antibiotics took complete care of the pins and needle feelings in my feet and hands and the burning in my back and spine .
It just seems to be new ones that pop up !
HELP???
--------
and lymesc? says in another post at that same thread:
Well right now it is my pcm trying to help until the llmd can see me in july .
I havent been tested through IGENX but plan on doing that soon .
I have had all the symptoms of lyme and they have ruled out lupus and arthritis .
I had one positive band on my western blot which was 41 IgG I was also on doxy when i had the test done . really dont know if that could affect the test .
-
end quotes from lymesc? posts
======
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I have had 3 WB done by Igenex and the only band that has ever shown up is 41. A couple other bands showed IND.
My sister who was diagnosed with MS was sick for almost 3 years. She has been on daily injections for almost 2 years and is doing unbelievably well. She has her life back and is working again.
Honestly I was convinced she had Lyme but I obviously was wrong since she has improved so much and I haven't.
I know treatment takes a long time but no amount of abx have relieved my chronic crippling fatigue. And since I have never had even close to a positive test I wonder.. I could have been infected by a virus since I had flu symptoms.
I really wish I had shown some other positives and then I wouldn't question as much.
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disturbedme
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posted
IND are weak positives... I would have loved to have some IND are my WB.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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seekhelp
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posted
I personally think band 41 means little, but.... I just get so frustrated hearing LabCorp found nothing on all reported bands, but Igenix showed positives for the same limited bands. It's so hard to understand and I'm in the same boat as everyone else. In my heart, I now believe I have Lyme based on symptoms and med responses.
I need more clarity from Igenix on how SO SO many patients have these oddball strains of Lyme not recognized by standard labs. I think they owe this to the general population IMO. I wish they'd lay it out in layman terma for all us non-science minded individuals so other docs may start believing.
A few weeks ago read 'Public Health Alert.' It was an OK publication, but in my mind lost all credibility when I see a giant picture of Dr. K on front, full page Dr. S ad, half-page Igenix Labs ad, and a full page Nutrimedix ad. It came across as a circle of entities/people all positively impacted by each other. A lab advertising such as Igenix really looks terrible and generates a conflict of issues debate.
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disturbedme
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posted
Also found this information about band 41 and found it to be very informative:
If you don't have syphillis and you don't have gum disease, and you have symptoms of CFS and FM or many lyme symptoms then suspect Lyme. Here are the reasons:
The following two reports by Allen Steere and Yale state that if a person has band 41 (or flagellin), Lyme symptoms, and they do not have severe periodontal disease or syphilis, they have Lyme borreliosis:
1) Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: '' Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,'' since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that, THIS CHANGING phenomenon means ``the spirochete remains alive throughout the illness.''
In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.
2) Yale and CT Agricultural experiment Station- the full pdf:
Use of recombinant antigens of Borrelia burgdorferi in serologic tests for diagnosis of lyme borreliosis.
Magnarelli LA, Fikrig E, Padula SJ, Anderson JF, Flavell RA.
Department of Entomology, Connecticut Agricultural Experiment Station, New Haven 06504, USA.
Recombinant antigens of outer surface proteins (Osps) OspA, OspB, OspC, OspE, and OspF of Borrelia burgdorferi sensu stricto and of p41-G, an antigenic region of flagellin of this spirochete, were tested with human sera in class-specific and polyvalent enzyme-linked immunosorbent assays (ELISAs). In analyses for immunoglobulin M (IgM) antibodies, 18 (85.7%) of 21 serum samples from persons who had been diagnosed as having Lyme borreliosis on the basis of the presence of erythema migrans reacted positively in ELISAs with one or more Osp antigens or the p41-G antigen. Eleven serum samples contained antibodies to OspC antigen, and of these, six also reacted to the p41-G antigen and to one or more of the other recombinant antigens. The remaining five serum samples reacted solely to OspC (n = 4) or to OspC plus OspA and OspE without reactivity to p41-G (n = 1). In analyses for IgG antibodies, seropositivity was comparable to that of IgM analyses and was marked by predominant reactivity to p41-G, OspC, and OspF. Similarly, all 21 serum samples were positive in polyvalent and class-specific ELISAs with whole-cell B. burgdorferi. Minor cross-reactivity was noted when sera from persons who had syphilis, periodontitis or other oral infections, or rheumatoid arthritis were tested with OspC, OspE, OspF, and p41-G. With relatively high degrees of specificity, ELISAs with recombinant antigens, particularly OspC and p41-G, can help to confirm B. burgdorferi infections. PMID: 8788993 [PubMed - indexed for MEDLINE]
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Keebler
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posted
-
Seekhelp,
Who funds the publication of JAMA and New England Journal of Medicine?
I see adds for pharmaceuticals all over the PubMed website.
posted
i've written several times on this board about my experience.
band 41 was the only band i had showing when i was at my most ill with lyme and co-infections. i had an em rash and positive pcr's to prove my WB a "false negative".
in my case, my immune system was not engaged against Bb. as someone mentioned above, i had another WB run months into treatment with more lyme specific bands showing.
LLMD literature speculates that some of those most ill with Bb will have very little activity showing on the WB... which makes sense. if your immune system is overloaded and can't recognize or fight the infection, you will be more symptomatic. but you really have to base this on a clinical diagnosis, plus a large number of tests that can clue you in on the presence of infection - not just the lyme and tbd tests.
as far as MS treatment mentioned above in patients who suspected lyme - but feel "great" on injections for MS, i assume those injections are steroids.
anyone will feel great on steroids, as well as various other anti inflammatory, autoimmune treatments.
however, steroids supress your immune system significantly, so if infection is present, you would be in a much worse place over time; with advanced infection and a weakened immune system.
anyone taking treatment for autoimmune diseases must be absolutely certain they are not dealing with chronic infection - yet this is something doctors who diagnose autoimmune syndromes never appropriately consider.
i myself do not believe in an MS diagnosis as viable. the diagnosis makes no sense to me.
as far as your own diagnosis and treatment; you have to be very careful when you consider all of this with your tbd literate doctor.
there are many reasons for chronic fatigue when treating chronic infection.
you might also benefit from looking at other treatment options as well as taking a good look at whether you are getting enough support nutritionally and detoxing your body while treating.
mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
My sister who has MS is on Copaxone which is not a steroid. Another interesting thing is that she went to see Dr. A.S. and he also told her she didn't have Lyme with just the 41+. So I figure if I had gone to see him too then he would have told me the same thing. He is actually the one that had her tested!
I just wonder why after two plus years on abx that I never showed more bands..
Posts: 343 | From North Carolina | Registered: Oct 2008
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seekhelp
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posted
You're probably right. I was thinking that too. The issue is Lyme is already highly controversial. It adds fuel to the fire. Drug companies is one thing. A lab facility promoting huge ads is much more off-base and looks like they're fishing for business. Try to step back and pretend you don't have TBD(s). Wouldn't you be highly suspicious?
Oh and add to that the fact they don't accept insurance. Now, you really have issues. LLMDs not accepting insurance is different due their non-traditional treatment plans for a so-called disease that doesn't exist and fully understandable. A lab not accepting it is another issue when most do. The combination of all these things is strange.
One thing I REALLY want to know is how many lit-up WBs Igenix issues that are just shy of CDC positive, especially on the iGg SIDE. I don't care about Igenix self-reported positives. I mean are there tons of 'oh so close' to CDC positives? I kept thinking about my labs and how I had 4 of 5 IgG with many IND right where i needed the + and the same on the IgM side. Are they careful not to issue CDC positives possibly?
Any idea of the number of CDC positives vs. Igenix positives available? Do CDC positives from commercial labs ever not be positive at Igenix?
This is probably a separate topic to be brought up so I won't interrupr this thread anymore. Just some thoughts.
[QUOTE]Originally posted by Keebler: -
Seekhelp,
Who funds the publication of JAMA and New England Journal of Medicine?
I see adds for pharmaceuticals all over the PubMed website.
-/QUOTE]
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Hoosiers51
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posted
If you truly feel you have Lyme, the best thing you can do is an experimental round with antibiotics, and see what happens. Sometimes more bands will show up later in treatment.
If the antibiotics get rid of your symptoms, it doesn't even really matter what it was in the first place anyways (except obviously for research and prevention)....maybe it was another strain of borrelia similar to Lyme, or maybe it was another infection.
But to answer your question, in one study, 40% of "normal" people tested positive for band 41 on a Western Blot.
Look at page 78 on this powerpoint presentation given by a well-known LLMD: (there is a graph that shows statistics in the study for each band)
The yellow bars indicate the percentage of 320 people in the "normal" population tested that have each band on the Western blot.
So from this, one can surmise that about 40% of people come in contact with a bacteria that has a flagella. Lyme and syphillis are certainly not the only ones.
By contrast, 80% of people who were in the "Lyme" category had band 41. (note: my guess is these are people who either had a bullseye or had a positive PCR, so they may or may not be in the latter stages of the disease or "chronic")
The best thing to do if you have band 41 only, and a strong clinical history that leads an LLMD to think you may have Lyme, is to experiment with antibiotics and see if it helps or if you get a defined "herx" reaction.
Sometimes more bands will come back positive later in treatment, or even after the patient starts to recover.
Just be informed, and use common sense, along with your own intuition.
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Lymeorsomething
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Seek, one important consideration is that Igenex specializes in these infections whereas the other labs are basically the "fast-food" of blood work. In fact, Quest admitted several months ago that their vitamin D testing had been sub-par...
So you don't know who's on the other end running the tests and how much they care about their respective jobs....
Igenex may be a little better simply because they have to be...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
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Lymeorsomething, I am aware of the Quest Vit D testing issues. Igenix doesn't have to be better. More positives are not better unless truly warranted. THey're making a lot of revenue off prospective and current Lyme patients.
There are garbage employees at many companies. I don't believe it's a company-wide issue as much as s single person not caring less about their job many times.
I just wish Igenix would cut ties with LLMDs and the ILADS board to separate themselves more.
Hoosier51, thanks for that slide - VERY helpful. Was it just Igenix's pool of individuals tested or a regular commercial lab such as Quest, LabCorp, MDL, etc. also incorporated? I like to see the big picture outside of just Igenix data.
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Hoosiers51
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posted
I'm not sure seekhelp, I didn't see that information on any of the slides. I get the impression that this was just a visual aid for a presentation, so maybe he stated that at the presentation, but I wasn't there.
I found this slide to be VERY helpful, like you. It helped put things in perspective for me, and when I looked at my specific bands on that chart, I realized it would be VERY statistically unlikely that I do/did not have Lyme. (even though I was CDC positive, seeing this helped give me more confirmation that it wasn't a false positive)
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Lymeorsomething
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I hear ya, Seek. I just can't see them monkeying with the results given the concentrated scrutiny they seem to draw...
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I was thinking that too. The issue is Lyme is already highly controversial. It adds fuel to the fire. Drug companies is one thing. A lab facility promoting huge ads is much more off-base and looks like they're fishing for business. Try to step back and pretend you don't have TBD(s). Wouldn't you be highly suspicious?
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