posted
I'm one of those people who just can't test positive. ALL of my tests have come back negative over the past two years, save for Mycoplasma pneumoniae that managed to show up positive after a few weeks on Doxycycline.
Through IGeneX I have tested negative for Lyme on the IFA, PCR, IgM, and IgG. But my Western Blot came back with:
IgM: 31 IND 34 IND 41 +
IgG: 39IND 41++
On a regular Western Blot I only ever showed "IgG 41+".
I've also been tested countless times (I'll say five, but I've lost count) for Bartonella hensalae and b. quintana, through antibody titres, IgM/IgG, PCR, and cultures, by labs such as Quest... All of which come back negative. I know bartonella is notorious for showing up negative so I don't give it much thought, in light of my overwhelming symptomology. I've also been tested for babesiosis, anaplasmosis, and.. something else I can't remember... They were all negative according to LabCorp.
But I'd really like to test positive for once. I've even gone so far as to get tested specifically around the time of my flares, to heighten the chance... But nothing! Or at least, not enough for these tests to pick up.
I'm going to redo the IGeneX testing, since my insurance will now cover it again. The first time our priority was proving Lyme so I didn't get the coinfection panels. I need to do that, now.
Does anyone have any recommendations on how I can test positive for these infections???
Stopping antibiotics is not an option, but almost all of these tests I've had done while off of them, anyway. And the only positive I did blatantly show (the mycoplasma) was while ON antibiotics.
I'm planning on doing:
Lyme disease: Western Blot
Bartonella: FISH test
Babesia: FISH
Rickettsia: PCR (all they offer)
Ehrlichia: PCR
Does this sound good? I am also immunodeficient, having several sub-clinical IgG subclass deficiencies (lowest end of the spectrum but not enough to qualify for therapy according to my doctor). I'm also thinking PCRs are useless for chronic infections, and that titres would probably be unreliable in me. HELP.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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So what makes you think you have Lyme?
Posts: 306 | From NY | Registered: Sep 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I'd double check the qualifications for IvIg... I'm not deficient in any Ig's but still qualify for it based on other issues. I'm just squeamish about taking in blood products if I don't need to use them...but my doctor has stated that he's seen good results treating Lyme in patients who also get the IvIg...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Thanks Razzle, I'll look into that. You're the second person to mention that to me so there must be something there!
And nybasketball I have the tick bite history and symptoms and flares and everything needed for a clnical diagnosis.
I hear often that the sickest of the sick rarely test positive, and since I didn't mention, I defintely am in that category. I hope that as I improve a little, my Western blot will become more positive? But what about all the coinfections? I'm under treatment nonetheless but if there are any 'tricks' to getting what's there to show up on tests, I want to know them!
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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posted
It just doesn't seem like you have Lyme at all, what are your symptoms? The tests are unreliable but you would've had some other indication of a positive by now.
With all of those tests, you would have had something.
Posts: 306 | From NY | Registered: Sep 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm no expert, but I kind of agree with nybasketball212. When you have to look so hard to find even a trace, the odds seem unlikely. Many, many people are exposed to ticks most likely. Does your LLMD question it? Have you ruled out everything else?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
With all due respect, I don't have the energy to explain my onset, symptom history, current symptoms, and flare-ups that match Lyme disease. I have a very experienced and competent LLMD helping me get my life back. I'm just looking for some help with which tests are best, possibly from those who didn't test positive at first, like me, and then tested positive later on. I know they're out there, hoping they see this thread.
Does anyone have any ideas on what could have helped them test positive? Did you test positive on a particulat type of test, or lab, such as IGeneX?
Thank you
Posts: 512 | From USA | Registered: Sep 2010
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posted
i tested negative first time around through igenex , although I had a positive elisa from quest. Then a year later I was tested again after taking antibiotics for a month (amox and zith) and then off antibiotics for 10 days and then tested again through igenex and I was WAY positive for igenex standards and cdc. I think what I did is called the antibiotic challenge. Look it up. That may help you get a positive test, if your really looking for one.
Posts: 121 | From Houston, TX | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Little_Olive, when I took Mepron, it spiked my WA-1 titer up to 1:2,048 from LabCorp. Perhaps that would help if you didn't do it already?
I'm not trying to be bothersome, but if you trust your LLMD this much, what's a positive test matter? Is it for insurance coverage purposes or self-validation? I understand the self-validation piece for sure, but I'm not one of much faith in all LLMDs opinions. To me, they're all human and make errors like anyone else. I just try to evaluate all the puzzle pieces and ask myself, what are the odds?
Also, pay close attention to Timaca's posts that symptoms mimic each other for Lyme, viruses, etc. GiGi also repeatedly says this. Gael says parasites can do it. Others say heavy metals. it's a confusing road for sure. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I'd put more faith in one's response to antibiotics + clinical diagnosis over testing. Yet I understand the reason for wanting test confirmation too.
If Igenex is covered by insurance, you might as well get all of their main tests. I notice the antibody tests weren't listed for Bart, Rickettsia & Ehrlichia... why not get those too?
You may want to also get Labcorp's Babesia Wa-1 done. Seems most get that back positive... I'd actually feel better about the accuracy of that test if people here posted a negative result.
Posts: 584 | From NY | Registered: Feb 2009
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I can totally relate to where you are coming from. I know I have said this before in other posts, but I will repeat it again. Personally if other tests are negative I would do a blood slide and see if that shows anything. You could easily have a strain of babs or bart or even lyme that is not being tested for by antibodies or PCR. Every lab is different in which strains etc they base their tests on.
I would also call all the different labs to see which if any take your insurance -- there might be one that takes your insurance that you are not aware of.
Labs to check -- IGeneX, MDL, Stoney Brook in New York, SpiroStat, Immunosciences, and also Neurosciences or Pharmasan (not sure what name they are using currently).
As a 2nd approach I would get a bloodslide -- 3 possibilities here -- F lab, Clongen and I think the 3rd one is called the Parasitology Center. Pretty sure none of these take insurance.
As I posted recently -- Clongen lab now does enrichment cultures -- where they try to grow out bacteria before doing a PCR test. Is supposed to increase the odds of a positive test greatly. They will mail you a test kit. And their species test for babesia or bartonella includes many more strains than just the few common ones other labs test for.
The enrichment is very similar to what the Galaxy Lab was previously doing for bartonella, but Clongen sends the enrichment medium in the test kit so your blood can be added to that on the spot -- I would think that would be a good idea, but think the tests are to new to say if it really imporves the odds of a positive test significantly.
If you are not taking something for hypercoagulation then I would probably try taking either wobenzyme or lumbrokinase for a week or so before doing the test. Also you could try getting a deep tissue massage the day of the test. Pretty sure I have read that tests are more likely to be positive if done in the afternoon. And especially if doing a blood slide test I would suggest having the blood taken from a fingerstick rather than a vein.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Oftentimes the sickest do not test positive. A list of reasons for this is at www.canlyme.com/seronegreasons - I think that will help explain what could be going on with negative test results.
Sometimes people don't test positive until after getting some treatment.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Yes it's mainly for my own wanting, but of course even more bands on the Western Blot would help confirm. I suspect since a lot of my initial Lyme symptoms flared up all over again after starting Rifampin for bart (since it's also a cyst buster for Lyme) that I'll probably have more IgM bands this time, which would be great, because that will prove ongoing, currently-replicating infection. My response last time was there, but subtle. But the Western Blot is the only thing I'm sure I'm getting again.
I've never done coinfection testing with IGeneX, so I was wondering if one type had a better chance of showing positives than the others? Since multiple tests are available for each, and I don't want to run ALL of them, which would be crazy expensive and make my insurance question things, you know how it is. It's a complete miracle I'm getting the treatment I need based on my current test results; don't want to push any buttons.
Lemon-Lyme, I'm not sure I trust the antibody tests due to my low number of antibodies and poor immune response. I have had the babesia wa-1/duncani test from LabCorb and it came back negative.
bea, do you think doing the FISH tests would be better, then? I'm rather excited about them because they actually do look at your blood and do not rely on your body's immune response to identify the infection... however on another thread someone said this test had poor accuracy.
Thanks for all the suggestions everyone,
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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Not sure which test would be best. Hubby did have a low level of antibodies on the babesia duncani test with IGeneX but his FISH test was negative. The tests were done a couple of months apart so it makes it hard to know why the results were different. But it is possible that the babesia treatment he has done recently caused the FISH test to be negative.
If you have not done aggressive babesia treatment in the last couple of months then I would probably do the FISH test if you can only pick one.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
little olive,
In our experience, when first bitten, our Babs antibodies were positive. That was years ago and I can't remember which lab.
No longer the case, and never treating it then, we have only gotten a positive Babs FISH, and that was from taking Malarone/Zith, I fell. Others have said artemisinin kicks up a positive test for Babs. Not sure if you are on Babs meds, but if not, maybe add artemisinin (only if you are on some antibiotic though) and pulse it 4 days on 3 days off. Do this maybe two-three weeks before babs testing.
Lyme antibody tests are supposed to turn more positive with treatment before they diminish because the body is now producing antibodies again for it. Either way, a negative Igenex with positive bands is not really negative. They achknowledge that on their test results, I beleive, by saying someone with symptoms should seek care because this may mean a positive, as it is a clinical diagnosis.
Hang in there,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Thanks again, that makes me feel better about the FISH test. We don't suspect babesia so we've never targeted it (gotten "miraculously" better on just Lyme/bart/myco meds in the past) but now I am on Zithro which inadvertantly rattles babesia, so I'm unsure how that will affect the results.
Anyone have any opinions on Rickettsia and Ehrlichia tests? I don't hear about those much on here, might have to start a different thread for them.
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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