posted
Hi everyone, I just got my lyme panel results from Igenx, & could use some help understanding what it all means. I spoke with Dr H at Igenx & he said I need to have one other test done to confirm 31 IND, so I am planning to do that this week.
Results: IgM 31 IND 39 IND 41 + 58 + everything else NEG
IgG: 41 IND everything else NEG
Can anyone give me some advice about the results? I am confused.
I have made an appt with a LLMD in TN (Dr B) for Aug 31st anyway, as my symptoms have been going on for almost 8 years. My previous dx has been fibromyalgia. I have major body pain all over, with severe fatigue, brain fog, headaches weakness, exercise intolerance, & much more.
Thanks for any help anyone can offer.
Posts: 9 | From Oklahoma | Registered: May 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sutherngrl
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posted
I was also misdiagnosed with fibromyalgia.
I began lyme treatment with a "clinical" diagnosis and later my test turned positive.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
UPDATE: My primary now refuses to order the confirmation test of the 31 epitope that Igenx has suggested. His nurse delivered the devastating news to me today, so I don't know his reasons why. I'm sure I can guess though. I'm pretty bummed. The Igenx doc said if I got a positive result on the 31 band, it would confirm a diagnosis of chronic lyme. Suggestions from anyone on what I can do?
Posts: 9 | From Oklahoma | Registered: May 2011
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sutherngrl
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posted
Go to a LLMD and get a clinical diagnosis, or have your LLMD do the 31 epitope test. Forget about your primary, you won't get any help there. We have all been there.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
An LLMD is necessary anyway.. so get started!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi signmamma:
Band 41 is specific to a spirochete bacteria, Lyme, Syphilis, or Weils. While MD's may indicate the band may cross react with dental spirochets that is not true (their flagella are different and a higher band).
Band 31 and 39 are highly specific to the Lyme bacteria. While an indeterminate reading is not high enough to be a positive it is not negative, there is something on the blot.
After 8 months when we finally had a WB run and obtained the band readings it only took a positive 30 (not lyme specific) and 41 to convince me we were on the right track wiht lyme.
Back in 1988 Alan Steere wrote a paper on the importance of band 41 and how an MD could rule out the other diseases based upon symptoms.
He then of course became corrupted and developed the restrictive WB so his Lymrix vaccine could pass FDA muster.
Based upon your sypmtoms I would think drug treatment for a period to time may show positive results.
Now my daughter has been on drugs for 14 months and she still has the fatigue, joint and bone pain (plus a couple of others). But she has had other improvements especially on the neurological side.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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timaca
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posted
Consider getting tested for the pathogens stated on the Infections tab of this website. They can give the same symptoms as Lyme disease: http://chronicfatigue.stanford.edu/
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Band 41 is specific to a spirochete bacteria, Lyme, Syphilis, or Weils. While MD's may indicate the band may cross react with dental spirochets that is not true (their flagella are different and a higher band).
---------
Back in 1988 Alan Steere wrote a paper on the importance of band 41 and how an MD could rule out the other diseases based upon symptoms.
He then of course became corrupted and developed the restrictive WB so his Lymrix vaccine could pass FDA muster.
- Tim .. have you seen this?? It is posted in the replies under the Western Blot thread .. along with other great information on the WB.
--------
VITAL INFORMATION ON BAND 41!!!!
From a seasoned poster: (NOT Lymetoo)
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 sero-diagnostic 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. However, 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: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by signmama: UPDATE: My primary now refuses to order the confirmation test of the 31 epitope that Igenx has suggested. His nurse delivered the devastating news to me today, so I don't know his reasons why. I'm sure I can guess though. I'm pretty bummed. The Igenx doc said if I got a positive result on the 31 band, it would confirm a diagnosis of chronic lyme. Suggestions from anyone on what I can do?
Can you call and request it yourself? It is $100. Or maybe the LLMD can call and order it. They store the blood for 90 days at Igenex so all it takes is a phone call and a credit card payment.
My guess is he has been talking to a traditional colleague who has "educated" him on the "proper" way to test for Lyme.
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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posted
Just got off the phone with Igenx. They are VERY helpful & nice! They however, can't do the re-test of #31 without a doctor's order. So, not sure what to do from here. I may have to wait till my appt with the LLMD Aug 31st & have him order it. This is SO Frustrating!!
Does anyone know the significance of 39? I got an IND on that one too, & was wondering what that could mean.
Thanks everyone for your input & help! Blessings to you all!
Posts: 9 | From Oklahoma | Registered: May 2011
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I read this article, which states that band 41 isn't necessarily significant for lyme. This doesn't jive though with other things I've ready various places, including here. Also, Dr H at Igenx said 41 is very significant, especially if other bands are positive or IND.
Can anyone elaborate on the things this article states about 41 not being significant?
Thanks!
Posts: 9 | From Oklahoma | Registered: May 2011
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posted
"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."
from the link I gave you yesterday .. posted above
No, the info Timaca gave you does NOT jive with common knowledge among most LLMD's. Timaca does not think Lyme is a big issue .. only viruses and other infections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Lymetoo and signmama:
I originally obtained the reference of band 41 and Alan Steere from something written by Dr. J (not the pediatrician but another LLMD).
As for Steere's paper (I'm starting to agree with my wife and brother that I've become too obsessed with this) I did do the search and read the abstract but have not been able to access the full paper.
The abstract was not enough but I will eventually obtain it.
From my readings Band 41 is highly significant as LLMD's have indicated its typically the first band to show up positive and as patient immune systems strengthen other lyme specific bands turn positive.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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timaca
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Member # 6911
posted
signmama and Lymetoo~ My personal approach is to first rule out obvious medical conditions which can be causing your problems such as thyroid problems, celiac disease, B12 deficiency, etc. A good list to go over with your PCP is: http://chronicfatigue.stanford.edu/overview/diagnosis.html
If your PCP does not feel you have those issues, then running labs testing for infectious pathogens is a possible next step.
Run as many tests as you can and see what comes back most obviously wrong. If you have only band 41 on a WB for Lyme disease (or just one or two less specific bands) and you have antibody titers as high as the lab measures for Coxsackie B4 then I'd treat the Coxsackie B first and go from there.
Any pathogen (Lyme included) is a big issue if that is what is causing your problem. Clinging to any pathogen as the cause of your problems without checking for other issues or other pathogens is not a wise approach in my opinion.
If I had stuck with the thinking that Lyme is my only problem I'd still be very, very sick because viruses are definitely part of my problem. Which also brings up the point that one can be sick with both chronic bacterial and chronic viral infections.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
That's reasonable, Timaca. I just don't like people being led away from Lyme when it's pretty obvious that it is a distinct possibility.
Are you well now?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I see it both ways Lymetoo. Being led TOWARDS Lyme when it could not be the real issue is just as devastating financially and emotionally. Most see Lyme here and that's all. It's not mean, just truthful. Going to a LLMD and being told you don't have Lyme is as likely as me winning $500 on an instant lottery ticket. Hasn't happened yet for me. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
UPDATE: My primary actually called me back yesterday & asked why I wanted to have the 31 band tested again. I explained it as best as I could to him, & believe it or not, he agreed to order it!! So, Igenx is working on it right now. What a miracle! I'll keep everyone posted.
Thanks for all the input everyone! It is very appreciated!
Posts: 9 | From Oklahoma | Registered: May 2011
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posted
Also, just found out that my Vitamin D level is 31 (should be 30-60). Funny, he suggested that i take 2000 IU of D a day, but I've been taking around 10,000-15,000 per day for about 6 months!
Does anyone know if Lyme affects vit D levels? Or, if low vit D levels are a symptom of lyme?
Posts: 9 | From Oklahoma | Registered: May 2011
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quote:Originally posted by signmama: UPDATE: My primary actually called me back yesterday & asked why I wanted to have the 31 band tested again. I explained it as best as I could to him, & believe it or not, he agreed to order it!! So, Igenx is working on it right now. What a miracle! I'll keep everyone posted.
Thanks for all the input everyone! It is very appreciated!
I wonder if Dr H called him and that may have changed his mind. Either way, congrats! I just had the same test done and it confirmed that band 31 is the Lyme epitope. Hope you get the answer you are looking for
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
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posted
Thanks everyone for your kind words! It feels good to finally have something to actually check for instead of being told that they don't know what's wrong with me & to just go home & take this pill to cover up all your symptoms!
It will be bittersweet if I find out I have it...hope that doesn't sound bad. 8 years is a long time to suffer & be told nothing & not know where to turn or what to do to treat it. I'm glad to know I have all of you to turn to for help. Blessings to you all for taking your time to help others. It means a lot more than you know.
Posts: 9 | From Oklahoma | Registered: May 2011
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posted
posted 07-15-2011 01:12 PM -------------------------------------------------------------------------------- Yes, per Labcorp test results I was positive for Mycoplasma and HHV6.
Per Burrascano who I would say is someone we could listen to in the topic of Lyme.
"Chronic Lyme Disease ("Stage III") - Ill for one or more years - Serologic tests less reliable Treatment must be more aggressive and of longer duration"
This is due in part to the immune system not being healthy enough to produce antibodies because of chronic Lyme to glow bands completely positive
9 cross-reactive for Borrellia 12 specific for Bb 18 unknown 20 cross-reactive for Borrellia 21 unknown 22 specific for Bb, probably really the 23/25 band 23-25 outer surface protein C (OspC), specific for Bb 28 unknown 30 unknown; probably an outer surface protein; common in European and one California strain 31 outer surface protein A (OspA), specific for Bb 34 outer surface protein B (OspB); specific for Bb 35 specific for Bb 37 specific for Bb 38 cross-reactive for Bb 39 is a major protein of Bb flagellin; specific for Bb 41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis) 50 cross-reactive for all Borrellia 55 cross-reactive for all Borrellia 57 cross-reactive for all Borrellia 58 unknown but may be a heat-shock Bb protein 60 cross reactive for all Borrellia 66 cross-reactive for all Borrelia, common in all bacteria 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane 93 unknown, probably the same protein in band 83, just migrates differently in some patients
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Now here is something to contemplate. If your immune system is compromised, then why can it produce antibodies to some pathogens (such as HHV-6 and mycoplasma in Fuel's case)?
One would think if the immune system was compromised that no antibodies to any pathogen would be produced. That is why it is a good idea to test for a multitude of pathogens and go after the one that is producing the most antibodies first.... because that is a pathogen that is likely to be causing a problem.
Why go after a flicker of a flame when there is a bonfire roaring?
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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James1979
Unregistered
posted
Timaca - I think the answer is because borellia have a unique ability to change outer surface proteins in an attempt to evade the immune system. This allows them to continue changing structures so that the immune system doesn't recognize them anymore. One doctor said it was like taking off one glove and putting on another one as a way to camouflage.
I don't think other organisms have this same ability.
So whereas the immune system has to recognize (create antibodies for) the other organisms only one time, for borellia it has to constantly re-learn how to locate the organism. This is one reason why the immune system might be too weak to keep tracking borellia, but it is still able to track the less-intelligent bugs.
There are other reasons, also, like Bb's ability to morph into L and cyst forms, to hide underneath biofilms, etc.
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Here is an article by Tom Grier, explaining the importance of OspC (band 23-25), and a history of how they left it out of IDSA: (actually it is better to read the whole article)
n 1994, the Association of State and Territorial Public Health Laboratory Directors, under a CDC grant, decided that there should be consistency between labs reporting Lyme disease Western Blots, and that a specific reporting criteria should be established.
The consensus committe, chaired by Dr. Michael Osterholm, Ph.D., MN, set nationwide standards for Western Blot reporting.
This sounds good, but one could argue they made a bad situation worse.
Prior to the hearing, virtually every lab had accepted bands 22, 23, 25, 31, and 34 kDa as specific and significant, and reported them as positive for exposure to Borrelia burgdorferi.
Not only are these bands specific for Borrelia species, but they represent all of the major outer surface proteins being used to develop the Lyme vaccines.
The committee, without any clear reasoning, disqualified those bands as even being reportable.
After the consensus meeting, those bands were no longer acceptable.
The result was that what had been a fair-to-good test for detecting Lyme disease had now become poor, arguably useless.
Many scientists have questioned these new reporting criteria, and several wrote letters of protest to both the committee and to laboratory journals.
Many labs stopped reporting the actual bands and instead, simply reported the test as positive or negative, thus preventing any further interpretations. (90)
How badly did the Lab Directors bootstrap this test?
The following is an analysis of the new guidelines presented as an abstract and lecture at the 1995 Rheumatology Conference in Texas, chaired by Dr. Alan Steere, MD. (1995 Rheumatology Symposia Abstract #1254, Dr. Paul Fawcett, et al.)
This was a study designed to test the recently proposed changes to Western Blot interpretation by the Second National Conference on Serological Testing for Lyme Disease, sponsored by the CDC.
The committee proposed limiting the bands that could be reported in a Western Blot for diagnosis of Lyme disease. Out of a possible 25 bands, 10 specific bands were selected as being reportable.
An lgG Western Blot must have five or more of these bands: 18, 21,28, 30, 39, 41,,45, 58, 66 and 93 kDa.
An lgM Western Blot must have two or more of the following three bands: 23, 39, 41.
Conspicuously absent are the most important bands, 22, 23, 25, 31, and 34, which include OSPA, OSP-B and OSP-C antigens - the three most widely accepted and recognized Bb antigens.
These antigens were the antigens chosen for human vaccine trials.
This abstract showed that, under the old criteria, all of 66 pediatric patients with a history of a tick bite and bull's-eye rash who were symptomatic were accepted as positive under the old Western Blot interpretation.
Under the newly proposed criteria, only 20 were now considered positive. (The number of false positives under both criteria was zero percent.)
That means 46 children who were all symptomatic would probably be denied treatment! That's a success rate of only 31%.
*Note: A misconception about Western Blots is that they have as many false positives as false negatives. This is not true. False positives based on species specific bands are rare.
The conclusion of the researchers was: "the proposed Western Blot reporting criteria are grossly inadequate, because it excluded 69% of the infected children."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
New update: My re-test of band 31 was negative. Does anyone have any further thoughts about my test results? Another lyme friend said my results appear to possibly be a dormant case of lyme, & that my doc might decide to try a short run of antibiotics (2-4 weeks), & then re-test to get a more accurate diagnosis. Has anyone ever had any experience with this?
My first appt with a LLMD is Aug 31st. I am currently on a strict detox diet to prepare my body for any kind of treatment, so I'm as strong as I can be going into it.
Posts: 9 | From Oklahoma | Registered: May 2011
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posted
Another lyme friend said my results appear to possibly be a dormant case of lyme, & that my doc might decide to try a short run of antibiotics (2-4 weeks), & then re-test to get a more accurate diagnosis. Has anyone ever had any experience with this? ============
Yes, this worked for me. It is discussed in Dr C's thread.
posted
A negative IGeneX 31 kDa Epitope Test only indicates that the band at 31 is not OspA. It does not mean that the band is not lyme.
The band could be viral. And could, it turns out, be another lyme antigen whose kDa is in the vicinity of the 31 kDa OspA band. There are several.
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