July IGeneX results.

So a few weeks ago my IGeneX results returned to me.

  1. My Lyme test is more positive. This is actually good, believe it or not! As you improve and your immune system is less burdened, you get more positive results. I now have bands 31, 34, 39–the most Lyme-specific of all, 41, and 58. I’ve never had band 58 before, and I’m not happy about it because this means the bacteria are now resistant to my fever response. This might explain why I don’t even get fevers during my Lyme flares, anymore. (See, this is your proof that they evolve.) And my band 41 now has THREE stars next to it… I didn’t even know you could get three stars! I.e., a very very positive band! I applaud my immune system for its abundance of “+” marks, whereas I’m usually only capable of “IND” bands, the very weakest positive response.
  2. NO Anaplasmosis. Also good! (Tested via IFA.)
  3. NO Babesiosis. VERY good! (Tested via IFA and FISH.)
  4. Possible exposure to either Erlichiosis (HME) or (and most likely) Rickettsia. I’m thinking Rickettsia felis–aka flea-borne spotted fever–is the most probable suspect, given my history of hundreds of catflea bites and the fact that I had a changing spotted rash on my feet for two years afterward. Good news is, Rifampin can treat it, which I’m already on, so. My results are technically showing exposure to E. chaffeensis, but it says on the paper it can cross-react with at least four other types of bugs, including all Rickettsia species.
  5. I FINALLY SHOW EXPOSURE TO BARTONELLA. So take THAT, fifteen other insensitive tests from Quest and Labcorp that said I never had it!!!

Both the Erlichliosis/Rickettsia and Bartonella tests were in the middle category of either resolving or active infection, depending upon your levels and symptoms. My bartonella score was basically borderline positive, but both results came from my IgG, i.e., where I have my immunodeficiency (PIDD, and the reason most of my tests don’t show positive). Which means, if I weren’t immunodeficient and had normal levels of Immunoglobulin G, the scores would have been higher, possibly high enough to surpass the “bordeline” category. Or at least, my bartonella result would be. Regardless of anything, I do have the bacteria antibodies. I am fighting it.

If I don’t have the Rickettsia…well I just HOPE I have/had that one instead of the Ehrlichiosis! It must be the easiest to treat, because I no longer have the spots on my feet and the IgG for it was the lowest it could have been without being negative: Anything below 40 is negative, and I got.. a 40. Accommodating for my PIDD, and it’d probably be slightly higher, but this is nothing to worry about, I don’t think. With no obvious symptoms and such low levels this is most likely in the “resolving infection” category rather than “active infection” (in contrast to the bartonella whose titers are much higher and symptoms still active). Perhaps it is also low because of the cross-reaction factor? I was tested for E. chaffeensis, so if I tested specifically for Rickettsia antibodies, would it be slightly higher? Who knows.

But mainly I am so, so elated that we finally have something that says, Look, the bartonella is here, in contrast to the.. dozen or so other tests I’ve had in the past two years that said I never had it. Pfft! (Only in the chronic illness circle are you happy when tests show something is wrong.) I wish I would have gotten tested for this via IGeneX, sooner! These are my results after six months of Rifampin and Zithro–I only wonder what they’d have been in the beginning!

And by the way. The bartonella species I tested positive for was B. henselae–the cat scratch disease variety! I wasn’t even tested for B. quintana, the type that does the classic five-day fever cycle like I have… So, based upon my symptoms and flare cycle, there’s a high chance that I actually do have them both like I feared last year. (Cat fleas can carry up to five different species of bartonella.) Speaking of that, if I’m correct, B. henselae follows more of a seven day cycle, or at least a less-defined flare cycle than the B. quintana strain… So there: Maybe the bartonella seriously is the reason my Saturdays are so “inexplicably” and yet, reliably, messed up recently…!

As far as how I feel about the results… In a sense, I’m a little relieved to find out that I’ve had two strains of bartonella, and one other resolving (most likely but unconfirmed) Rickettsial infection. It helps me better understand why I became so unimaginably ill within such a short time frame.

I’ve always thought, How on earth can two infections at once bring me down that quickly, even if I did have M.E…. But basically (already having the Lyme for two years, albeit unknowingly) within a matter of two months, I got four infections at once: The bartonella and rickettsia strains from hundreds of catflea bites, and Mycoplasma pneumoniae from the children of a family that came to stay at my house during a bad storm. It makes me think that, even though I was already steadily going downhill with the undiagnosed Lyme disease, at least it did take more than two additional bugs to bring me to almost completely bedridden within eight months.

This is also proof that a negative test means nothing. People need to realize this fact, above all else. We do not have adequate testing–your levels have to be very obvious and you need to have a functioning immune system in order for the routine tests to work. Those are the conditions they were designed to work under, and even then, the CDC admits their inaccuracies are very high. There is a REASON Lyme disease is the fastest spreading infectious disease in the United States.

If you’ve ever been diagnosed with MS, ALS, Parkinsons, RA, Lupus, CFS, or Fibromyalgia, please find an LLMD–Lyme Literate Medical Physican, the people who risk their lives to stand up to the infectious disease society and treat people who are dying–or someone else who completely undestands how common these tickborne (and fleaborne!) infections are becoming. Yes, all of those aforementioned illnesses can exist on their own, but far too many doctors unknowingly use them as catch-all categories due to their ignorance of infectious diseases such as Lyme disease and Mycoplasma. And even if you have M.E., you still need to be tested, because we are suspectible to infections that most people don’t even have to think about. (You’d be well off reading a pamphlet on having HIV, and how to avoid things–like kittens!–that are considered high risk for the immunocompromised.) Lyme can also cause false positives on autoimmune tests (such as ANA and ESR), so even having “confirmation” such as that is no merit to say you’re safe. Everyone owes it to themselves to make sure they don’t have a treatable infection like this; especially when it can and does lead to death if not treated.

a rainbow at night

5 responses to “July IGeneX results.

  1. Pingback: Is this some form of ocular neuritis? Also, lots of improvements! | A rainbow at night

  2. Hi-
    I also tested borderline (40) for Rickesettia.
    I am highly skeptical, what exactly does this mean.
    The LLMD called it Rickesettia, I don’t feel comfortable something so borderline being called positive, so if I was 39, I wouldn’t have it?…and why does below 40 mean negative and 40 positive. It would seem that either you have it or you don’t. I just don’t understand their rationale for their Rickesettia scale…
    Any thoughts or knowledge about this. Please email me. Thanks!

    • To me, it could either mean that you had the infection and it’s in the process of resolving itself (perhaps you’ve taken antibiotics that kill it?), or, a cross-reaction to something similar. All the rickettsial bugs can have a tendency to cross react with one another; I’m still on the fence if mine is a cross-reaction or a resolving bug, since I had so much potential exposure, and because I got this test after four months on Rifampin.

      What the tests are measuring are the number of antibodies in your blood. THe more antibodies, the higher the titer. As an infectious disease doctor once explained, there are cut off points for the antibodies because low scores on these tend to be cross reactions or otherwise not medically significant, while higher results are of course more specific and indicate an active infection. You could test for different types of rickettsial infections, and see if yuo score high on one–that will likely be the one you really have. But generally, if you have antibodies to some type of rickketsia (and there are dozens), your doctor will put you on a trial antibiotic and see if you improve.

  3. thank you for the fast reply :)
    is doxy the abx of choice, if it works, then the antibodies to Rickettesia should go down? I haven’t started yet, but am extremely untrusting of labs, drugs, and doctors, etc…

    • You’re going to have to trust someone because this is too much to do alone. It’s good to be educated about what you’re dealing with, but most people need a competent professional to guide them and explain what things mean. If a doctor can’t explain WHY to you about anything, or has a superiority complex about it, find a new doctor. Don’t be afraid to ask them questions–this is your health!

      Doxy is great but alone it isn’t enough. Usually Doxycycline and Rifampin should knock it out. You should search for LymeNet, and become a part of the support groups there–lots of information, and I’m there, too! :)

Offer your thoughts

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s