posted
I ordered my own lyme WB, which I got through LabCorp. I had been having extreme fatigue and other generalized unpleasant symptoms.
Anyway, IgG was positive for p41 and p39. All other IgG negative, and all IgM negative.
I've had (and recently) much dental work, so forget the p41.
Now, I understand p39 is specific to the lyme bacteria, but the question is if antibody production to other antigens could cross-react.
The body produces tens of thousands (millions) of antibodies that are slightly different to each antigen, through mutations in the genetic material coding for the proteins.
I've never been bitten by a tick, to my knowledge, never had obvious EM rash.
PCP says I don't have lyme. However, some of my symptoms are eerily similar to alot of what I've read people describing on lyme forums.
Posts: 200 | From Ohio | Registered: Apr 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
There are many species of Lyme that are not tested for and tests are not yet developed for.
I'm not a doctor, so this isn't medical advice. Yes, those bands are indicative of Lyme according to Lyme literate literature.
IGeneX is the most reliable lab by ILADS standards.
Pcps and non-llmds are not trained to recognizeLyme (and also intentionally told misinformation) and misdiagnose people constantly. I was told I didn't have Lyme by several doctors. Tests showed up negative before they showed up positive.
Don't rule out coinfections either. I tested negative for babesia on blood draws, but it was seen clearly on a blood smear. I was diagnosed clinically with bartonella.
It is a misconception that you have to have a rash to have Lyme. Many ticks are as small as a poppyseed and never noticed.
Please start educating yourself. Get "Why Can't I get Better?" By Dr. H and "Cure Unknown". Go to the ILADS website.
I highly recommend you see a qualified LLMD as soon as you are able to. Let us know if you need recommendations.
"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."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Yeah I read some study on pubmed from years back that said that 0% of positive p39 didn't have lyme (or the other way around, not sure)
So yeah, wasn't sure if that particular antigen's western blot epitope might react with an antibody the body produces through hypermutation in response to a different antigen. I"m not a molecular biologist, so I'm not sure if what I've typed above even makes sense.
I've just been on Doxy for one month for a sinus infection, so maybe my next test will reveal more bands that were liberated from killed bacteria and initiated an immune response.
Of course, in my adult life (for sinusitis) I've been on every antibiotic under the sun (and often felt a little bit better after each course), so surprised I don't have more bands.
But to that end, I have no idea when I might have been first exposed to the bacteria.
Direct antigen tests, bacterial culture, and/or PCR DNA amplification tests would be better. Maybe the LLMD I see will order one of those.
Because maybe I was exposed at some point, but interested if RIGHT NOW, THAT spirochete is active.
Posts: 200 | From Ohio | Registered: Apr 2016
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WPinVA
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posted
I would recommend finding an LLMD, who can sort this out. They will probably test you for co-infections, which is a good idea in and of itself. And also having a positive co-infection test is indicative of having Lyme. Also, they may run an Igenex test, but that's not always necessary.
None of these Lyme tests are perfect but yours along with your symptoms sounds very suspicous for Lyme.
My Lyme was initially misdiagnosed as a sinus infection too. I don't know why PCPs are so opposed to the idea of a patient having Lyme... it's very odd. Don't let them give you steroids!
Posts: 1737 | From Virginia | Registered: Aug 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Lymetoo is right, you have lyme. Start educating yourself here. There is so much great info on Lymenet.
Don't waste your time with non LLMDs. Go to Seeking a Dr. to find one (best bet). Be careful of ID docs. They think they are lyme literate but they are not (learned the hard way).
You should read: Cure Unknown (Weintraub). It will open your eyes and help.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
My latest WB I re-ran still showed p41, but p39 is gone, but p18 showed up. Ok, I clearly have the lyme bacteria in my system.
I'm concerned because my body no longer makes IgG to p39? Well darn, if the lyme decides to express that surface antigen, then no more protection???
Posts: 200 | From Ohio | Registered: Apr 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
LabCorp has a junk lyme test.
You can't draw any conclusions from that test.
However, Burrascano says that at about the 1 year mark, that is when the person's immune system is generally compromised.
Page 3 of Burrascano:
"Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)."
Posts: 9931 | From Maryland | Registered: Dec 2007
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Jordana
Frequent Contributor (1K+ posts)
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posted
Lyme likes to morph its expression a lot; in response to just about any change in your physiology including temperature, sleep, hydration, food, etc.
Having lived on the Lyme internet for a year I can tell you that people who test never get the same test twice.
Me:
January '15 -- Igg 41, 66 Labcorp March - Negative Elisa Armin Labs August -- 100 percent negative WB October Quest 41 IGG 41 IGM
Igenex Jan 16
IGM
39 IND 41 ++
IGG
31++ 39+ 41+++
It could look totally different a year from now, or a day from now.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
TF - what do you mean by junk test? My understanding of junk labs is that they can miss the infection. However, what about the converse, when they're reporting positive? Then haven't they caught the infection?
Posts: 13116 | From San Francisco | Registered: May 2006
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Jordana
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Member # 45305
posted
CD57 changes all the time too. Six months ago my Cd57 was 60 and I had no bands on the WB.
The most important thing to look at for diagnosis are the specific bands. If you've got em, you've got em.
I know it's a huge thing to assimilate.
The rest of it -- how long you've been sick, how "sick"you are, all that -- there aren't really many clues in those tests about that stuff.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
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posted
OP, the two tests I took that were really helpful were a panel for Lyme and co-infections plus the Elispot LTT from Armin Labs; that was negative but the elispot showed borderline T cell activity. Borderline. Still not conclusive.
Then eventually I sprung for Igenex, which gave me band 39, about six months later. No doubt or question at all after that, just a bunch of kicking myself for not being more aggressive in the beginning.
You can get an Igenex panel for around 400 dollars from Truehealthlabs.com.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
The only band I had until I had an IGENEX test was band 39.
I wasn't about to bank my life and health on the 2-3% chance it *wasn't* Bb. 97% specificity + tons of symptoms was enough for me to go to an LLMD
LLMD re-tested a month after that suspicious WB - completely positive with plenty of bands....just not the ones the other WBs look for.
If you're symptomatic, going to an LLMD might be a good idea just in case and give you an expert opinion.
I read a cool story about a high school student developing a new Lyme test...maybe on this forum. Fingers crossed it's better than the current Western Blot....
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When I said "LabCorp has a junk lyme test.
You can't draw any conclusions from that test."
that meant that you can't conclude what you were concluding which was:
"I'm concerned because my body no longer makes IgG to p39? Well darn, if the lyme decides to express that surface antigen, then no more protection???"
LabCorp's test misses a lot of bands and a lot of lyme as a result. You can trust any positive band you get from them because it is impossible to mistakenly report a positive. But, you cannot count on any negative band that they report because their test is junk. It will miss a lot of positives.
So, you have nothing to worry about regarding band 39.
If you tested through Igenex, you would likely have several bands positive. If any lyme specific band is negative, you can't draw any conclusion from that such as that your body is no longer making that antibody.
If LabCorp does not test the blood right away, you can get negative bands because the blood clumps and the antibodies can't get out of the clumps to show up on the test material. Also, LabCorp doesn't even test for all of the lyme-specific bands.
So, in many ways, it is a junk test.
Posts: 9931 | From Maryland | Registered: Dec 2007
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At this point, is there even any value in spending $$$ (even through LLMD) for the IgeneX lyme test?
Also, I understand the co-infection testing is even less realiable (even through IgeneX). Co-infections seem like a can of worms. And the drugs used to treat some of them have sometimes even more serious side effects than antibiotics used for lyme.
Posts: 200 | From Ohio | Registered: Apr 2016
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TF
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Member # 14183
posted
If money is tight, go to a lyme doc (best you can afford) and tell him your symptoms and see if he will treat you without tests. Some will.
See where I recommended this recently to another person:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You do not need another test for lyme. The positive bands (especially #39) you already have tell you what you need to know. That, with your sharing your situation, your concerns, questions, symptoms, etc. Your very body is as much the test result page as anything, too - to the eyes and mind of an experienced LL doctor.
As for coinfection assessment, let the LLMD assess you. IF tests are needed, they will know the best way to proceed as there are many variables. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Separate matter where you say: " the drugs used to treat some of them have sometimes even more serious side effects than antibiotics used for lyme." (end quote)
It sounds like you don't want to know and are saying you'd not want to treat, anyway, as it's to harsh.
I assure you with my very life. Not knowing; not treating is as worse a situation as you can get. That can destroy your life in ways you can not now even phantom. I know.
You seem to be at a point where you are in much better shape than many who find out later on, after damage has accumulated. So you have many advantages.
How you approach this, though, there are options. The right protocol, even if rough, is better than not addressing it.
There are options - and even if you can't afford the best, there are still actions you can take. Just strive for finding the truth and finding the most direct and assertive way to treat and support.
While the support part of any protocol is just as important as the direct part, one cannot be without the other. The right support methods can help ease the way your body handles treatment.
Yes, it's a lot to even think about, this finding truth, facing it - and actually addressing it. It does take a lot of courage and time and effort just to dodge faulty assumptions that trip us up.
Getting beyond those, though, with expert wisdom be that by your selected reading, consults, etc. - well, it's getting to the other side of that is entirely possible.
Make priority the consult of a truly LL doctor for a proper assessment.
And, yet, with all this "direct action & support" there is still room to find some beauty every day, whatever approach you take. Action matters. -
[ 04-21-2016, 12:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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WPinVA
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posted
None of us can really tell you whether you need an Igenex test - an LLMD will be able to evaluate you for that.
You have never had a test for co-infections so yes I do think that would be a good idea. They are not always reliable yes, but a positive is very telling.
Yes, the abx are strong, but not treating is much worse for your body!
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
I got a LabCorp Bartonella test. Two strains, IgM and IgG, all negative.
I am yet to get my blood smear and mycoplasma results back.
Apparently 33% of lyme-infected people have babesia, 30% bartonella, and so on. I'm not a statistician, but it would seem there'd be a high % that a lyme infected person would have any ONE.
Medical literature (even from both sides of lyme opinion thing) say that babesia and bartonella are usually self-limiting, non-serious infections in immunocompetent people.
And since those can be transmitted by bed bugs, lice, scabies, spiders, and mosquitos in addition to ticks, probably most people have had the pathogens injected into their circulation. The question is, do they persist?
Posts: 200 | From Ohio | Registered: Apr 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
"CO-INFECTION
A huge body of research and clinical experience has demonstrated the nearly universal phenomenon in chronic Lyme patients of co-infection with multiple tick-borne pathogens. These patients have been shown to potentially carry Babesia species, Bartonella-like organisms, Ehrlichia, Anaplasma, Mycoplasma, and viruses. Rarely, yeast forms have been detected in peripheral blood. At one point even nematodes were said to be a tick-borne pathogen. Studies have shown that co-infection results in a more severe clinical presentation, with more organ damage, and the pathogens become more difficult to eradicate. In addition, it is known that Babesia infections, like Lyme Borreliosis, are immunosuppressive.
There are changes in the clinical presentation of the co-infected patient as compared to when each infection is present individually. There may be different symptoms and atypical signs. There may be decreased reliability of standard diagnostic tests, and most importantly, there is recognition that chronic, persistent forms of each of these infections do indeed exist." (pages 4-5 of Burrascano)
In his talks, Burrascano has said that if a person has lyme for over a year, 100% of the time they also have coinfections.
And, there are certainly many lyme patients who just can't get rid of bartonella or babesiosis. You can find many on LymeNet.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ohio,
While TF's post offers a good reply, I want to echo that.
You say "Medical literature (even from both sides of lyme opinion thing) say that babesia and bartonella are usually self-limiting, non-serious infections in immunocompetent people." (end quote)
Well, "medical literature" is wrong. Dead wrong. That is just hogwash from the IDSA. For certain, an ILADS educated LL doctor knows that is not true.
There has been nothing self-limiting about either babesia or bartonella in my body, my life. I did not have access to treatment even with positive tests. I did the best I could with what I could afford but I assure you, these infections can be brutal and destroy life.
For yourself, it's vital to consider. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The LabCorp coinfection tests are REALLY junk.
Every lyme patient I know in Maryland also has babesiosis and bartonella. In fact, these 3 are found together so frequently that lyme specialists all over the U.S. call them "the Big 3" and many routinely treat a lyme patient for all 3 without regard to coinfection testing.
Burrascano gives the frequency of each co here:
"It has been published that as many as 66% of Lyme patients show serologic evidence of co-infection with Babesia microti. It has also been reported that Babesia infections can range in severity from mild, subclinical infection, to fulminant, potentially life threatening illness. Subclinical infection is often missed because the symptoms are incorrectly ascribed to Lyme. Babesia infections, even mild ones, may recur even after treatment and cause severe illness. This phenomenon has been reported to occur at any time, including up to several years after the initial infection! Furthermore, such Babesia carriers pose a risk to the blood supply as this infection has been reported to be passed on by blood transfusion." (page 23)
"It has been said that Bartonella is the most common of all tick-borne pathogens. Indeed, there seems to be a fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However, several aspects of this infection seem to indicate that this tick-associated strain of Bartonella is different from that described as “cat scratch disease”. For example, in patients who fit the clinical picture, standard Bartonella blood testing is commonly non-reactive. Furthermore, the usual Bartonella medications do not work for this- they suppress the symptoms but do not permanently clear them. For these reasons I like to refer to this as a “Bartonella-like organism” (BLO), rather than assume it is a more common species." (page 24)
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