A few weeks ago, my doctor sent my blood to a different lab than we tried initially, and, drum roll please, my test came back CDC positive for Lyme! This is seriously the best bad news I could have asked for!
Now that I am officially CDC positive, this means that I have complete validation of my disease, both for myself and for other doctors who don't "believe" Lyme exists here. I will also be able to be counted as having Lyme disease in my state.
To hear for so long that there's nothing wrong with me and that it's all in my head--well, you can't even begin to imagine what this positive test result feels like! There was always a little doubting voice in my head saying, "Maybe it's not Lyme; maybe it is all in my head."
I can't help thinking of the very nasty rheumatologist who, when I was very, very sick and desperate for a doctor to take my pain seriously, looked at my curved, bent, arthritic, inflamed hands and told me nastily, "My hands look like that, too!" (Let's not mention the fact that she was in her late 50s and I was in my late 20s) Of my new doctor who I mentioned was going to give me a Lyme test, she retorted, "If you go to her, she's going to tell you you have Lyme no matter what!"
Guess what? I did have Lyme, even though the rheumatologist and many other doctors didn't want to hear it. And now, I get the peace of validation. It's bitter sweet, though-it means I have Lyme disease. It means I am an outcast by the medical field. If people knew even a snippet of the abuse that Lyme victims go through to get diagnosed and treated, they would be appalled. And no one is standing up for us. But now, at least I am one of the lucky few with a positive CDC test. And that, my friends, is the best bad news I could have asked for!
Congratulations!! Why do you think the different lab made a difference?
ReplyDeleteThis is the way I understand it, and I hope I am explaining this right! The Lyme tests don't actually test for Lyme, they test for the antibodies that you are producing against the disease. Since I've been in treatment for 6 months now, my body is now producing enough of the antibodies to get a positive CDC test. I was strongly positive by the first lab, but not CDC positive.
ReplyDeleteLyme tests are notoriously unreliable. A positive means a positive, but a negative doesn't mean anything. I was negative through a local lab, because they only check for CDC standards. Because my doctor is knowledgeable about Lyme, she knew to send my blood elsewhere. Otherwise, I would still be undiagnosed!! Because the tests are so unreliable, many people aren't being diagnosed properly. Though I was misdiagnosed for around a year, I'm one of the lucky ones!
Should I say "congrats"? I understand your frustration, I'm not CDC-positive either. Your explanation is about how I understand it too. The CDC-mandated test is ridiculous. I don't understand and am SO frustrated that there is not a reliable test for this @#$#@$#@ disease. I just don't understand in 2011 how this is even possible. If you haven't already read it, you need to read "Cure Unknown" by Pamela Weintraub.
ReplyDeleteNow I'm *really* confused. Wouldn't being in treatment *reduce* the number of antibodies because there are fewer bodies to be anti-against? Did the second lab test according to CDC standards? Does it help with insurance coverage?
ReplyDeleteI am so happy for you in a weird sad way. I know just what you mean. I need that positive CDC test too.
ReplyDeleteMy two cents on the antibody issue.
ReplyDeleteFor a quick diagnosis patient, meaning you get bitten and treated quickly (which should be the STANDARD, and not the zomg! amazing! situation), you are dealing with X amount of Lyme in the system. Your ELISA (antibody or antigen) /Western Blot (protein) will be reacting against the small amount of B. burgies that are in your system.
With a chronic Lyme patient, you have an unknown amount of B. burgies encysted in your system, plus a certain amount that are currently active. Key to this idea is the production of endogenous neurotoxins, which are the key to the funky symptoms you get.
Perhaps when the initial ELISA/Western blot was done, only a small amount of the bacteria were active in the system.
Note: keep in mind that for patients with the fatigue/brain fog, that you are having specific CNS symptoms. The brain is very cool in that is has a blood brain barrier, which blocks out a large amount of stuff and keeps the brain and nervous system in a nice safe container. So anytime you see a patient with these particular symptoms, it is a good bet that you have an active population of the bacteria in the CNS, having a party.
Note 2: One of the treatment issues with BB is that the bacteria love to squirrel themselves into highly anaerobic environments--areas that are not well supplied by blood.
Ok, back to the ELISA/Western blot, which are pretty much based on blood samples. Given an active population of BB fenced off in the "safe zone" of the CNS, and an active portion hanging out in anaerobic areas (which by definition have bad blood supply) you are hoping to catch enough of an active BB population highly oxygenated areas of the body to give a positive reading.
So why would you test positive after treatment? My theory:
Antibiotic therapy has to rotated/cycled for effective treatment against BB because of their mutative ability (what works today, works today because the bugs that live change their appearance/life style/makeup so that the abx is no longer effective).
Keys here:
--use of abx forces the population to adapt or die, so BB activity
--long term use of abx forces more BB to respond
--supposed 4 week cycle of activity of BB means that long term abx therapy will catch more unique populations during their activity cycle, forcing them to respond or die
--I love the word die in connection with BB :)
Anyway, in a nutshell, the longer therapy means you get some die off and improvement in symptoms. This means you have an increased amount of *stuff* from them floating around in the venous system, which makes the chances of getting enough *stuff* for a positive test that much better.
Let me know if that at all makes sense. :)
Note that this is my pet theory, and so not medical advice. I am just a med student w/chronic Lyme, not your PCP. ;)