I am very intrigued by Igenex note that (HSV, EBV, HCV and/or Syphillis) can cause a fale positive on their IGG/IGM Western Blot.
Does anyone know which bands are most likely to react when Lyme is NOT the infection producing antibodies?
Can the * (starred) bands produce IND or +'s and be anything but Lyme?
Very difficult not knowing the exact cause of my test results - primary and increasing symptom is burning nerve pain for which I cannot find relief
Have most people here tested for ALL of the cross-reacting pathogens listed on the Igenex test?
Regards Posts: 247 | From The Country | Registered: Oct 2007
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seekhelp
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posted
Band 31 can be viruses. Band 41 can be lots of stuff. I've read 23-25 can be early stage EBV if on the IgM side.
There is a Lyme confirmation test for band 31, but honestly it seems pointless as I've never heard of Igenex telling a person they're negative.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I think 30 & 31 are the bands which can be affected by viruses. And 41 can be positive due to a number of different bacteria.
So yeah, you can have a false positive Igenex. It's not likely, if you have symptoms/co-infections too, but it's possible.
That's why Lyme is really a clinical diagnosis. And when in doubt, an antibiotic trial can be useful as a test.
Posts: 584 | From NY | Registered: Feb 2009
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posted
But if you have other Lyme specific bands... guess what?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
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posted
Seek, Igenex told my husband he was totally negative for lyme disease.
So, now you HAVE heard of Igenex telling a person they are negative.
I asked my lyme doc to test hubby because we were married for the entire 10 years I had undiagnosed lyme disease plus the 2 years I was inadequately treated for TBDs. I wondered if I had passed it to him. He had no symptoms of any kind.
So, Igenex DOES report negative results on lyme testing.
I just want to let people know that. I think there is a reputation issue at stake when someone says Igenex never reports a negative lyme test.
I believe this has been stated on this board before, but it bears repeating each time a thread includes this same assertion.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TerryK
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posted
As far as no one ever testing negative at IgeneX:
AND THERE ARE MANY MANY MORE THREADS LIKE THIS
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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From Metallic Blue Band 41 http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89066#000071 Additionally, 41kd is a crucial spirocettal protein. Whether it's Lyme or not is speculative, but we know for sure if you show 41 on more than one test, the probability is "extremely" high that you do have some form of spirochete.
It is well known that not all spirochetes cause Lyme Disease, but it's also known that human beings only contract a few known spirochete infections. There are three families of which include: Brachyspiraceae, Leptospiraceae, and Spirochaetaceae.
Take a guess: Which family is known to carry pathogenic infectious pathogens? If you said all three, you're correct. Out of all of these families each include species that are pathogenic to human beings or other mammals. There are many we have yet to discover.
So, if you have 41kd, and you can reproduce those results on more than one test, the probability increases dramatically that not only are you carrying one of those families, but that if you're demonstrating a wide spread systemic illness, 41kd is likely connected to it. If you've run a battery of tests, and covered all typical basis with an infectious disease specialist, and they can't confirm where that 41kd is coming from, you ought to be even more presumptuous of pathogenic infection.
This is where Brain SPECT scans come in. You can also perform MRI testing, however the likelyhood is only about 15% on average that find evidence. You begin the search of circumstantial evidence. Most people -- if they can afford it -- can find evidence of infection. Using western blots prior to antibiotics, and about 6 weeks "during" antibiotics can demonstrate a profound change in antibody titers and bands have a greater probability of showing up. This is a result of the infectious agent dying, releasing protein antigens that make their way into the blood stream and lymph system where the body can attempt to destroy and or remove them. In the process of doing so, antibodies quickly form to mount an attack. The body can't tell the difference between organic or inorganic material. The result is a clearer response to an infection that was likely hiding in tissues out of reach of the immune system while it was alive.
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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"Research I presented in 1998 involving over 400 borreliosis patients, showed an 87% response rate to antibiotics. This was if they had one borreliosis-associated antibody on their blot.
So if there is enough suspicion that Lyme borreliosis is the cause of a patient's symptoms, so much so that a Western blot is ordered, then if only one borreliosis-associated antibody is found, it is significant!
Medical literature is replete with statements about false positive test results for Lyme borreliosis. Since 1988, I have diagnosed and treated well over 600 borreliosis patients. Only 2 of those patients with a positive borreliosis test did not respond to antibiotics. This is a 99% success rate!
So in the trenches of day-to-day medical practice, false positive borreliosis tests are not an issue. In retrospect, those 2 patients that did not respond to antibiotics may have also had babesiosis."
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TerryK
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Comparison of the Frequency of Antibody Reactivity to Various B. burgdorferi Protein Bands Between Lyme Patients, Syphilis Patients, and Normal
Posts: 6286 | From Oregon | Registered: Jan 2006
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I am not questioning the validity of the Igenex test...just questioning my results and what they might indicate other than Lyme?
I did NOT respond to 6 weeks of IV treatment, in fact my symptoms have become worse since then - they are all neurological - tinnitus, burning skin, and terrible insomnia.
I suppose I should do standard labs testing for EBV and HSV, what do you think?
I see no reason why I would have either of those, but have to wonder since they're mentioned in the Igenex results?
Can HSV cause widespread peripheral nerve pain? Can it cause centralized nerve pain? Much of what's online says it cannot, yet HSV is known to lurk/reside in the nerves. I just want some relief - this is maddening, cannot sit, stand or lie without the onset of burning sensations.
Strangely enough, I do NOT suffer from many of the symptoms people speak of here, for which I'm thankful, but the feeling of burning skin is something I just cannot seem to accept.
Thanks Posts: 247 | From The Country | Registered: Oct 2007
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seekhelp
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posted
No, no. no I'm NOT saying Igenex doesn't produce negative test results. I was misunderstood. Many, like you TF, have given me some insight. I'm saying based on my readings on Lymenet, I have yet to see a negative on the confirmation test for band 31. Who has?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
MBB3 ..If it helps you .. then get the other tests.
You're worse with treatment? Happens to just about everyone here until that bacterial load gets knocked down.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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julielynne4
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posted
6 weeks of IV and you are worse - to me means it's working...
I have had burning skin that you mention and it is horrible.
I am curious about the symptoms that you do not experience that you say many people from this forum have. Lyme produces such a vast array of symptoms - are you referring to joint pain?
I know how frustrating this whole thing is - and I know there are other diseases, viruses that can come in to play. But it looks like you have lyme to me... Do you have a good LLMD?
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TerryK
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MBB - Check out my last post so that you can see how likely it is that your specific bands would represent a false positive for lyme.
Sorry, I can't answer your questions about HSV. I would get testing for as many things that have similar symptoms to lyme as you can. That should be part of a differential diagnosis. I think that would include heavy metals. It is mentioned in ILADS guidelines as I recall.
Some people need IV for much longer than 6 weeks to turn the corner. CaliforniaLyme used to post here and she needed IV for 7 months before her symptoms resolved. Some may need it even longer. Are you seeing a good LLMD?
Have you been carefully evaluated for co-infections? If you have them, it can be very difficult to beat lyme without treating them.
There could be a number of reasons why your symptoms are worse since IV including the need for detox. For some of us, the need for detox can keep us sick because we don't make enough antibodies to get rid of borrelia toxins effectively. The toxins cause many symptoms. There are lots of posts here about detox.
Are you being exposed to mold? Do you have candida? Do you have inflammation under control? Were you doing anything for biofilms? Thick blood? Fibrin? Have you taken a cyst buster? The list goes on and on.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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TF
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Tinnitus, burning skin, and terrible insomnia are classic lyme symptoms.
I felt like I had moving patches of sunburn all over my body. My own LSD trip. This especially happened each night when I laid down, and especially the parts of the body that were touching the bed.
I never heard of any other disease causing such a thing. It is a type of neuopathy (nerve damage). So, why would you have neuopathy? Lyme disease is primarily a disease of the nervous system, per Burrascano, so it is very common for it to produce these burning skin sensations. I also felt like I was being stabbed by thousands of pins and needles. Also had burning pain going down the jaw non-stop, like liquid fire burning me.
I had a friend who broke his neck in a fall and was rehabilitated from it. He said he had to live with the feeling of fire going down his legs. This burning feeling is from nerve damage.
It is virtually impossible to live with the burning skin pain once it gets severe enough. It will drive a person crazy.
And, my insomnia was unbearable. Of course, insomnia is a very common lyme symptom. My now famous lyme doc said that lyme affects the sleep center of the brain.
In many ways, my symptoms were not the ones that are normally associated with lyme disease. I had no joint pain, no swollen knees, no bulls eye rash, no tick bite, etc. That probably had a lot to do with why it took 10 years of going from doctor to doctor to get my diagnosis.
Just so you know, I finally got to a good lyme doctor and I completed my lyme treatment nearly 5 years ago. I am still symptom-free, enjoying my life. And, it is the same life I had before lyme disease.
All of those horrible symptoms are gone and they never come back. So, don't give up looking for a cause. I had to go to a total of 3 lyme docs before I found one who could cure me. I took antibiotics from my first lyme doc for 3 months and had NO NOTICEABLE CHANGE in symptoms.
The third lyme doc found that I had babesiosis and bartonella in addition to lyme disease.
He discovered this by ordering 2 Igenex tests for each disease. Have you done that? If you are positive on any coinfection test, that is another way of proving that you have lyme disease.
I wish you the best. Don't leave any stone unturned. It is so tough when you are seeking your diagnosis. You can't get anywhere until you get the correct diagnosis.
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TerryK
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Thanks for clearing that up seek. Actually, there was a pregnant woman here maybe around a year ago who was negative with the confirmatory test. After a good clinical evaluation, she was told that she did not have lyme.
posted
I suppose I meant to say that I do NOT have arthritic symptoms. Nor do I really have bad brain fog, at least not currently. And I can have very good energy, although this fluctuates.
But the neuropathy symptoms are unrelenting.
My 6 weeks of tx were back in Summer 2008. Had nerve pain for 1.5 years before tx and post-tx it covers a wider area. Did tx worsen this? I know my tx was short-term in the opinion of many here.
I agree I should be tested for everything that can cause my symptoms.
Thanks for any advice Posts: 247 | From The Country | Registered: Oct 2007
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TerryK
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MBB3 wrote: I suppose I meant to say that I do NOT have arthritic symptoms. Nor do I really have bad brain fog, at least not currently. And I can have very good energy, although this fluctuates.
Sounds like me when I was first getting sick. I primarily had the orthostatic hypotension and immune system dysfunction and symptoms fluctuated with no rhyme or reason.
Everyone is different depending on their genetics, strain, co-infections etc. etc. etc.....
I'm sorry you are suffering and not sure of your diagnosis. Please don't wait too long to get the investigations and treatment going. Symptoms can be slow coming on and then suddenly they can take off. It is much harder to do everything that is necessary to figure out your illness once you are really sick. I hope you don't get there but best to put things in motion now rather than later.
Wishing you well, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote: There is a Lyme confirmation test for band 31, but honestly it seems pointless as I've never heard of Igenex telling a person they're negative.
My Igenex test was negative, and 31 epitope was positive. Seek, you are so right, every person who has negative Igenex tests, test positive with the 31 epitope.
I asked Dr. H., "If the 31 epitope was so definitive for lyme, then why isn't that the gold standard for testing?" He said that some test positive for different bands, not just 31.
This is exactly why I question my diagnosis. It doesn't make sense to me.
Posts: 964 | From san diego | Registered: Oct 2009
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timaca
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Get tested for HHV-6, EBV, CMV, HSV1/HSV2, VZV. Focus Diagnostics lab is a good lab for testing, but you have to work with Quest lab for billing, or your doctor has to have an account with Focus.
Best, Timaca
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Pinelady
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posted
I believe it is that way because many also have
other infections with the lyme which makes it more
difficult to bring a good response. I know I have
at least 3 coinfections so I did not test positive on confirmation.
That does not really matter. I still have no doubt Lyme.
The confirmation may be a way to try to pick out vaccine related positives.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TF
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posted
I did not have any arthritic symptoms ever, in my 13 years with lyme and company.
And, I did not have brain fog either.
Posts: 9931 | From Maryland | Registered: Dec 2007
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susank
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posted
My confirmation test for band 31 was negative. So I was neg. for the two bands which are most likely to mean virus ie 30 and 31? FWIW - I have had EBV for years - last test pos. for early antigen. I have HSV and think in the past I tested positive for HHV6. Had blood pulled last week for re-test with Igenex. Will be interesting to see the results - to compare tests from last year. Meanwhile I am so sick......
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Pinelady
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posted
susank did you have antibiotics in the system? They did request none.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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