Actually getting my hands on a copy of these results was a headache and a half. I had to hunt them down because nobody deemed it necessary to let me know they were in, and the ordering physician is a complete jerk who holds a grudge against me because I told him, no, I would not make him my main neurologist because he doesn't accept insurance and I can't afford to. I later found out why this bothered him so much. He has insurance fraud claims out the wazoo in other states, so he's no longer able to accept insurance. So when I called and asked if I could see my results, he basically told his receptionist, "Get her PCP's fax number and fax the results over to him. I don't want to look at her results." Which was COMPLETELY fine with me! I didn't WANT him to look at my results. I just wanted to be able to look at the results I paid over $400 for with my own eyes. But anyway, after about 5 phone calls, I was able to drive over there and pick up a hard copy of the results.
Looks like I'm negative. I'm beginning to believe the people who keep telling me I'm just crazy seeing how so many other possibilities have already been ruled out.
Good for you in being so determined to get your results! I wouldn't give that doc another second of my thoughts.
Srry your results weren't more definitive. But it is not useless and you are not crazy. While IGeneX's interpretation calls your WB results "negative," you do show signs of Lyme. Many LLMDs believe 18 is Lyme specific, but I don't believe there is absolute evidence for that. I think IGeneX doesn't double star it because it is not "officially" Lyme specific.
Bands 31 and 39 are Lyme specific, and you showed something on those bands, just not enough to register as an official "positive." A IND (indeterminate) result on a Lyme specific band IS clinically significant in the presence of Lyme symptoms. Band 58 is also common with Lyme. And of course, nearly everyone with any spirochete has 41.
Here is the paragraph from drjoneskids website on "Tests explained" regarding your IgG band 45:
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis). Heat shock protein. This helps the bacteria survive fever. The only bacteria that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
I only had a single + on 18, 31, & 41 on the IgM (after having it for 6 years!). IGenex called it positive because both 31 and 41 were +. On the IgG, I only had a single + on 41 and an IND on 31. According to the IDSA and CDC, my IgM should be considered a false positive because if I really had Lyme, I would have had 5 positive bands on the IgG. And yet here I am a year later, greatly improved with antibiotics and still fighting off my second coinfection.
You have more evidence of Lyme than I did. I was so sick at the point I was tested, I went to the ER 3 hours later and was admitted for 3 days. My immune system clearly wasn't putting up much of a fight anymore.
Considering that people who've had Lyme over a year are immune suppressed and usually show reduced or insufficient antibodies, your result, combined with your symptoms & history, do indicate Lyme to me. I am not a doctor and certainly cannot diagnose anyone, but I would bet that with some Doxycycline, you might experience herxing (a confirmation of Lyme) and you might also show more antibodies on a subsequent WB.
The challenge would be to find a doc willing to give you some Doxy for "possible" Lyme. I would expect a good LLMD to make a clinical diagnosis for you. Unfortunately, it is a long shot that your results would convince a Lyme illiterate doctor to take Lyme seriously. Such is the curse of these Lyme antibody tests.
Here is another thought: you might be able to convince one of your regular in-network docs to order Ehrlichia tests for you based on your 45 band. HME (Ehrlichia) and HGA (Anaplasma) are related and ideally you would be tested for both. I believe Ehrlichia and Lyme are usually treated with the same meds. That might be enough to get you started on abx.
If many LLMDs would consider this a positive test in the presence of symptoms, then I find it really annoying that IGeneX would print NEGATIVE on the paper in all caps. Now my neuro is going to see that and "I told you so" me to death, but what can you do. I'll keep the Ehrlichia thing in mind, although I'll probably just not talk much about these results with my of my "regular" doctors and will just wait until I can get to someone Lyme literate, whenever that may be, if my neuro isn't able to pinpoint an alternate source of my symptoms.
I don't really feel up to typing an in-depth response right now. My eyes decided to start annoying the heck out of me the other day (and I discovered a hard bump under my left eyelid yesterday, joy! Something else to worry about!), and staring at the computer screen is making me nauseous, but just wanted to thank you two for your responses! I'm getting similar input from the other two Lyme forums I posted on as well. Everyone says I look positive, and I'd really like to know why IGeneX, which is supposed to be the Lymie's lab, would tell me otherwise then. Ack!
While IGeneX is more generous in their interpretation, they still need to follow the known science in how they interpret the results. I think they show the IND bands so that Lyme literate docs can follow them like bread crumbs. (Other labs do not report an IND result. They just call it "negative"). I wish they would come up with an "Equivocal" category for people with results like yours.
I had an "Equivocal" result on my IFA screening test at IGeneX. 0-39 was negative, 40-79 was equivocal, and 80 or higher was positive. I was a 40 and I was very ill.
I don't blame you for keeping the results under wraps for now. You are probably right that a "negative" result would further convince them you don't have it.
There is no baggage that I am aware of around Ehrlichia. You could ask for a test for it based on tick bites in the past. Maybe one of your docs would be sympathetic and willing to order it.
One other thing that occurred to me is that I recently learned about hemochromatosis. The symptoms are remarkably similar to Lyme in that they are multi systemic. Usually, symptoms don't show up until later in life, but it is still a possibility. It is genetic, but many people who have it don't know it. There is an iron load test for it.
The other thing that came up recently was Brucellosis. It is tick borne and also has a very similar presentation to Lyme. It is uncommon and not on doctors' radar at all.
(I still think you probably have Lyme, but eliminating other possibilities is always a good thing.)
I was diagnosed with hemochromatosis when in TX and it was all from Lyme.
The hematologist said mine was genetic but my current hematologist from my hospital visit here in FL said I don't have it. It's a high storage of ferritin. Mine was high once in TX and that was it.
It reminds me of being positive in Texas for Lupus too. When I got here to FL they said I don't have it. Of course also told I had MS and Hashimotos as well as a few other things.
Lyme is so hard to diagnose because of its tendency to mimic other illnesses. I was diagnosed with so many illnesses in TX that I told them I should be in the medical books because what are the chances.
My blood tests were so abnormal, otherwise they probably would have sent me to a shrink. Which they do to many Lyme patients.
Also igenex paperwork was updated in october and says bands 41 and 83/93 could be ebv , syphillis etc. i never once read that band 83/93 could be those. I thought there website said the 30 bands could interfere. It did not says this on my paperwork from 2 weeks ago. I know the 41 band is a broad spirochete possibilty.
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