Things that DO make me think I have Lyme, according to this test:
(*) I have an "IND" for band 39, which is very Lyme-specific band.
(*) I have more IgM reaction than IgG, which is common in chronic infections, such as Lyme disease.
Things that DO NOT make me think it's Lyme:
(*) The 39 band is a weak IgG band, i.e., an old infection, not a recent one. Which means this could
be a remant antibody of an old Lyme infection (because not ALL strains of Lyme turn chronic). Otherwise, a
positive 39 IgM band would make more sense, wouldn't it?
(*) The only bands I have positive on my IgM are the bands that can cross-react! IGeneX says
bands 31 & 34 can cross-react with Epstein Barr, Herpes Simplex, and Hepatitis C Virus.
(*) The 41 band on my IgM and IgG, can also cross react, and though I read people on here saying it can
only cross-react with other flagellum-powered bacteria, my LLMD says it can even cross-react with H. pylori!
(which I know I've had)
(*) All of my other IGeneX Lyme tests were negative: IFA titers negative, Multiplex PCR negative on
both the serum AND whole blood (this test is supposed to pick up DNA for flagellin bacteria)
I know some are keen to think any band whatsoever represents Lyme disease, but I know cross-reaction DOES
occur, especially in people who are a smorgasbord of other infections.
Any opinions??
little olive
Posted by lymednva (Member # 9098) on :
Without looking at test results, do you have symptoms of Lyme? That is the best way to make a determination. Have you seen a LLMD? If not, and you need to find one, go to the Seeking a Doctor Forum here.
I have been positive on only a Babesia Duncani test, but and being treated for chronic Lyme which goes back decades. I have no doubt I have it. I herx on meds, and have way more symptoms than I can count!
Posted by little_olive (Member # 28063) on :
I do have symptoms of Lyme but the kicker is that I have other things that can cause every single symptom that Lyme does.
I get 'something' flaring every four weeks, but now it happens every TWO weeks... What does that mean? Who knows!
I also have been questioning whether or not the Mycoplasma pneumonia could be my main problem, since I haer the symptoms are indistinguishable from Lyme!
And the bartonella I got from a cat, not a tick, so just because I have that coinfection doesn't even mean anything!
So confusing, I couldn't expect anyone to figure it out, but I do wonder whether these tests really suggest Lyme disease or not.
I'm waiting on my LLMD to get back with me this week to discuss the results but until then I am so perplexed!
Posted by Hoosiers51 (Member # 15759) on :
Hmm....this is a tough one.
Just FYI, there have been people that are positive for Lyme by PCR (which means you definitely have it, active) and they only had 41, and I believe that was with Igenex. So stranger things have happened. I read it on here, so it's on Lymenet somewhere.
Did you do any antibiotics before this testing? What antibiotic? What dose and for how long (at least 2 weeks I hope?)
The interesting thing is that it says in your signature line that you became symptomatic 2-3 months after a tick bite. Interesting. Was the bite in Louisiana? There is something called STARI that you should look into....though I'm not sure if Igenex would pick up STARI as Lyme or not (that would be something to call the lab and ask). Do a search on this site or another good Lyme site if you don't know what STARI is.
Another thing.....you could get your CD57 measured through Labcorp. If it is really low....like 50 or below, Lyme is more likely, so they say...and studies indicate this as well (studies by a doctor named Stricker).
Sorry you didn't get more definitive results. I would retest later on, when you feel things are really flaring. You could also try stimulating the immune system with something like Cat's Claw, then retesting later. If you could get a + on 39, that would be better lab evidence that would give you more definitiveness as to what you are fighting.
Posted by Hoosiers51 (Member # 15759) on :
Also, you could call Igenex and find out if they could do the band 31 confirmation test for you, if you only had the IND. I'm not sure if that's possible or not (like if you need a "+" on 31 to do it, etc).
But you could try that test, and see if that comes back positive.
Posted by bcb1200 (Member # 25745) on :
In my (non medical) opinion, yes. 31 and 34 technically aren't negative and are very lyme specific.
My IgG was completely negative yet I have it.
Posted by nenet (Member # 13174) on :
Symptoms after tick bite is a big red flag to add to the differential.
I can understand your concerns - we've all definitely had them.
It may be that your worries about cross-reactivity can be (relatively) easily answered. There are tests for those infections you mentioned that might cross-react with those bands.
Good LLMDS will test for them (and other possible causes) as a matter of course to rule out other possibilities besides Lyme.
If your LLMD hasn't done so yet, ask them if they will run them - or get a Primary care doc to do them, you might be able to get them covered by insurance that way.
Also, IGeneX has a band 31 confirmation test. It seems like that would be your best bet to me.
Your statement about "not all strains go chronic" confuses me - I have never seen anyone in any study make such a concrete claim (I'm curious to know how someone in science could make this statement). This is all still unmapped territory.
Lyme PCR tests are wonderful for specificity, but horrible for sensitivity ("Lyme CSF-PCR had a sensitivity of 5% and a specificity of 99%"). Even in Lyme meningitis cases, sensitivity in CSF was found to be too poor: http://www.ncbi.nlm.nih.gov/pubmed/16094225
Whole blood would have even less of a chance of finding Lyme DNA - Lyme does not like to hang out in the blood.
If you go to a lake and dip a bucket in the water, you can't conclude there are no fish in the lake if there are no fish in your bucket.
Check out that band 31 confirmation test from IGeneX - that might be your answer.
Posted by nenet (Member # 13174) on :
And just to re-emphasize what others already mentioned, even if you were to come up positive on one of the cross-reacting infections, that does not rule out a concurrent Lyme infection.
If you doubt the clinical diagnosis factor of Lyme Disease being true (trust me, we've all been there, and had lots of doubt and confusion - it's healthy to qustion), please see the CDC website - even they warn that testing is unreliable for ruling out Lyme diagnosis, and insist that it is a clinical diagnosis.
Posted by nenet (Member # 13174) on :
Oh, and someone mentioned STARI - IGeneX is the only lab I know of whose Lyme WB tests for more than just Bb sensu stricto, and they include B. lonestari (which is the Borrelia species currently associated with STARI).
Posted by sillia (Member # 23994) on :
Your Igenex results are almost identical to mine. I didn't have a known tick bite though. My LLMD went over symptoms and med history in great detail, he suspected it WAS Lyme from his clinical evaluation.
Once I started the antibiotic regimen it became obvious that I was indeed killing lyme bugs. I have made steady progress in my symptoms over the past 7 months and feel I am on the right track.
Posted by Pinelady (Member # 18524) on :
You may need a challenge to get a better response.
If I had symptoms with that test---I would treat.
Posted by little_olive (Member # 28063) on :
Thanks a bunch for all of this information.
I do not find bands 31 & 34 "lyme specific" when IGeneX writes on their paper that they can interfere with at least three other viruses.
I got the "not all strains go chronic" from a new article someone posted HERE, actually. The strains that tend to create problems are the weak strains, because they do not initiate a strong enough immune response to be effectively killed at the onset, and thus slither around easier into the organs without being detected.
My LLMD thinks that even though my IGeneX is technically negative, because of my exposure, symptoms and pattern, along with the bands that DID show up (such as the infamous "band 39"), that I am positive for Lyme disease.
little olive
Posted by Pinelady (Member # 18524) on :
What do you THINK you have?
Posted by little_olive (Member # 28063) on :
I'm well aware Lyme is a clinical diagnosis and I have been receiving treatment for the past
year, which is ongoing. I have to treat other infections regardless, but having gotten so many
other thinsg from different sources (I ironically did not get bartonella nor mycoplasma from a
tick), you can't blame me for wanting one less infection to deal with, especially when I have
so many other illnesses that do explain the symptoms.
With the exception of the 4-week, now currently 2-week symptom pattern: I know bart doesn't do
that and I am completely unaware if people have this type of pattern with Mycoplasma pneumonia,
even though I keep hearing that its symptoms are indistinguishable from Lyme disease. I was hoping
the IGeneX would be more concrete than this, but if it's enough for my LLMD who is very
experienced, it's enough for me.
Posted by terri3boys (Member # 12993) on :
THAT VIDEO CLIP IS UNBELIEVABLE!!!! If it weren't such a serious subject, it would be comical to watch!
My jaw was on the floor, or I was saying "You've GOT to be kidding me!" I'm at a loss for what else to even say or THINK!
EVERYONE should watch this. Where is there a clip like that on Lyme Disease? Where is OUR little clip of stupidity mixed with so many different standards that base HOW and IF we're even diagnosed correctly?
I'm outraged that so much $$$$$$$$$$ has been used to research HIV/AIDS and THOSE are the kind of responses that are given! How are we ever going to get any straight answers on Lyme?
Maybe I'm over reacting.......but that just hit me the wrong way big time. I'm going to take a bath to try and relax, and wash the b.s. off me that I just watched.
Sorry. Just my honest feelings pouring out after a long day.
G'night, terri3boys
Posted by little_olive (Member # 28063) on :
No problem, terri. I actually missed the clip. I'll watch it now...
.......
Hmm. I only got to about three minutes, but I don't see how this is different than a lot of other conditions. Hypothyroidism, for example. I know people in Europe who cannot get a diagnosis and subsequent treatment, even though they'd test positive here in America with me. Some criteria for diseases like HIV and Lyme are so dependent on the "who and when" that they leave out too many; other illnesses INCLUDE too many.
Posted by terri3boys (Member # 12993) on :
little_olive,
I understand what you're saying about the criteria being different in different countries; the dependency on "who and when"; and that MANY illnesses are unfortunately not dx'd and treated in an effective manner, etc.
As far as watching the clip goes: Please watch the entire clip. The 1st three minutes doesn't even get into what got me so upset.
If you can find the time to watch the whole clip, which is around 7 or 8 minutes, then you'll see what I'm talking about.
I don't normally take the time to bother with watching clips of anything, esp. if it's longer than a couple of minutes! I've been on the computer much longer than usual the last couple of days, and I watched that clip out of curiosity.
Maybe because Pinelady posted the link. (Thank you, Pinelady!)
That was definitely an unexpected eyeopener into an illness that I thought had pretty solid testing standards. Shows what I know!
That's why they call it PRACTICING MEDICINE!
Try watching the whole clip, little_olive. I just found it fascinating.
Take care of yourself, terri3boys
Posted by Pinelady (Member # 18524) on :
I was just as shocked as you. And yes---thats a great idea...Our own Lyme WB Clip of shame...
Posted by Pinelady (Member # 18524) on :
By the way, there are those reporting that the H1N1 vaccine is causing AIDS WB's to be positive for 4 mths...Whatever that means....They have the technology to find contaminates thru deep sequencing and they have not decided to make them use it....http://www.youtube.com/hivquestions
http://www.virology.ws/2010/03/29/deep-sequencing-reveals-viral-vaccine-contaminants/ The sequence analysis revealed the ex...pected vaccine strains in each preparation, and in three cases, other unexpected viral sequences. The retrovirus avian leukosis virus was found in the measles vaccine, but at a very low level (700 nucleotides from 4 sequence reads). A virus similar to simian retrovirus was identified in Rotateq (276 nucleotides from 1 sequence read). Significant levels of porcine cirovirus 1 were found in Rotarix. The entire viral genome sequence was deduced from 6344 sequence reads, comprising over 40% of the reads done for that vaccine. --------------- For those that don't know yet. It has been determined that this virus used to be named SV5- which is a monkey virus now porcine. http://www.fms-help.com/animal.htm We wait for their next move.
Posted by little_olive (Member # 28063) on :
Okay, I watched the entire thing and... Wow. I'm not sure what to say, but it's really humbling to be reminded that we're all just people trying to do the best we know how. You would think paying thousands of dollars to get a degree behind your name would at least give people the knowledge to come to sort of agreement on things, so we wouldn't have such varying views... But it looks like in the end, we just learn a bunch of fancy words and can't come to any consensus.
Posted by Pinelady (Member # 18524) on :
Africa has the highest incidence of HIV in the world. How they know this with these tests is beyond me...
Can you imagine where this is leaving them while introducing the new vaccines for AIDS/Malaria/TB/etc. etc...When they have at least a 11% incidence of Borrelia in ticks....
Watch how Haiti's initiative to vaccinate this last yr. has failed as hundreds die. You cannot vaccinate the weak and expect to boost immunity.
It was proven in the Aboriginals. Many of whom were saved by Vitamins C and A IV.
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