I was given this highly confusing (complex) e-mail regarding the tests … I’m not sure how the western blot test could have been finished already since the blood draw was on Friday and they said it’d take 5-7 days to do…
The infectious disease tests for causes are coming back positive for everything. The titers for Lyme disease, Mycoplasma and EBV all have high IGM. The Western blot test for IGG came back negative, hence this is unlikely to be Lyme’s Disease. The EBV virus titers are the highest and for both acute and chronic disease. I will speak to a colleague about culture verification of active infection. Both EBV and Mycoplasma are still possibilities. Until the neuroradiology is completed we will not be able to rule out vascular and pressure causes.
Unfortunately, that WAS the doctor. He’s not great at being able to explain it all in layman’s terms. I thought maybe someone here had some familiarity with all these medical terms.
This is what I think I understand (since my first post), though:
An IGM tells whether the body has EVER been exposed to a particular virus; an IGG tells whether the body is CURRENTLY trying to fight it. Apparently, once the body’s been exposed to a given virus, it will continue (perhaps indefinitely) to produce additional antibodies for that particular virus. So the first test only suggests that I may have been exposed to Lyme at some point.
As for Epstein-Barr and Mycoplasma, no western blot was done, so those will require another blood draw to see how the IGG’s come back for those. EBV can become (or cause) mono, so that’s one possibility in consideration.
Sounds like you got it all… I don’t know too much about various tests, but he’s obviously saying some things are not yet ruled out whereas other things pretty much are (lyme disease). He also states that before the neuroradiology report comes in he can’t rule out any microvascular compression of the 8th cranial nerve, which could be responsible for your symptoms.
Bear in mind a scan of your head only shows if you have a crossing blood-vessel (for all I know) over the nerve, not that it’s actually compressing against it; having crossing blood-vessels is fairly common without having any symptoms of compression (which is at present a somewhat controversial diagnosis, altough Dr Hain seems to feel there is truth to it).
I agree with Lisa. Can you email him back and explain your confusion with the highly technical report he sent you? Maybe he didn’t realize that the average patient would not fully comprehend his email…
I got a response from someone I e-mailed about this… they said…
His [the doctor’s] conclusion to me suggests that he may not know much about Lyme. IgM and IgG in Lyme are cyclical and do not work like other infections. I would definitely pursue a Western Blot from IGeneX. The fact that you also show Mycoplasma which is a common Lyme coinfection is another indicator.
There was more to it than that (a little), but that’s the gist of it.
Hi George,
I am just baffled how your doc gave you partial results without a thorough explanation. As a physician, I find this to be just bad medicine. I really think you should contact him immediately for clarification. He either should not have given you these partial results or he should have called you with an explanation and answered your questions. My advice would be to make sure you get a copy of all your results so that if you decide to use other physicians in the future you can share these tests as part of your history.
Hang in there. It must be so frustrating with all this information that is inconclusive.
Lisa
Wow, do I feel freaky right now. I’ve got a horrific headache, the dizziness is magnified beyond usual proportions, and my brain feels like it’s on speed. This is like a bad panic attack but with pain and dizziness. Don’t know why I’m saying it, except I think I’m plunging fast.
Last few days, I swear I have times when I wish I wouldn’t wake up the next morning.
Hey George – sorry to hear you’re feeling so lousy. But given what your saying here, it’s VERY important NOT to buy into believing your spiralling out of control and will lose the plot. This illness has an insidious way of undermining confidence and creating the illusion of loss of control –– panic attacks are all too common.
It’s not until you’ve hit rock bottom and bounced back that you soon realise that no matter how bad it feels, it can’t hurt you in any way. Take it from me that you will rise from this again and don’t go there with catastrophic thinking otherwise you’ll just fuel it all further and feel much worse. I know this VERY well because I used to throw panic onto it a lot in the early days. If you can, treat it like a miserable mother-in-law (lol) and ignore it as best you can. Distraction is the key.
The infectious disease tests for causes are coming back positive for everything. The titers for Lyme disease, Mycoplasma and EBV all have high IGM. The Western blot test for IGG came back negative, hence this is unlikely to be Lyme’s Disease. The EBV virus titers are the highest and for both acute and chronic disease. I will speak to a colleague about culture verification of active infection. Both EBV and Mycoplasma are still possibilities. Until the neuroradiology is completed we will not be able to rule out vascular and pressure causes.
George – asked the prof and he said given these results you were probably exposed to Lyme but it’s not significant now (IGG negative). IGM is old and not particularly reliable. Mycoplasm is rare and unlikely and he said if anything you might have EBV hanging around. From what I read:
“Most people become infected with EBV, which is often asymptomatic, but infection commonly causes infectious mononucleosis (also known as glandular fever).”
You don’t have glandular fever so this sort of rules out EBV. I think I had EBV show up years ago too but never had any symptoms.
I still don’t see anything here that would make me think you are not dealing with MAV. I just don’t buy that there is some weird combo of previous viruses that you had exposure to that would account for your symptoms.
If you have more than MAV, you will probably have more symptoms. I dont know if you identify with any of these. I have posted on here about this before, as I have been diagnosed with CFS (in the past, lymes, lupus, infections etc). Seen private doctors too.
Whatever it is, its more than MAV and you can feel it. If you do too much physically, for me its say, an hours cleaning, or 2 hrs shopping, you cant put one leg in front of the other, pouring with sweat, dizzy, eyes closing, body aching, especially legs. You feel virusy on and off, pricky throat etc. Energy level rock bottom.