posted
Here's the question and then the story - Once a positive blood test for lyme - is it always positive? I have not had a repeat test since intial diagnosis and will be calling my doctor tomorrow to ask for a retest (if it's worth it).
Now the reason I'm asking-
Sorry it's been a while. I should have been posting how well I've been. I was on abx for 6 months (off last August) and every month I notice an improvement (even off the abx).
But..... I've been under a lot of stress lately and not getting enough sleep (some nights) and..... well.... I'm having trouble focusing, finding words and today....
Well today started out great - 11 hours of sleep a little tired this morning got a lot accomplished and went to the gym and BAM - fatigue hit me and I couldn't make it through my workout.
Pushed through to a concert this evening and had to leave early - sore neck, arm discomfort (has been occuring since last week off and on) and soo fatigued, yet here I am and can't go to sleep.....
Yes, folks, at a glance I think lyme has struck back. So I'll repeat the question - could this be a relapse or another infection (it's tick time again in our area) but have not noticed a tick or a bite (of course that means nothing as I didn't notice it the first time either...)
posted
Well, in a way, it doesn't make much difference. Either way you need treatment.
Lyme doesn't go away easily and only when caught right away would 6 mo treatment be enough. At least that's my opinion from what I've seen around here.
Did you get treatment within days of your first infection?
I would be especially concerned right now about co-infections. Babesia is one that's a big problem for those of us who are chronic.
Meds for babesia are completely different from those for Lyme.
I was diagnosed about 9 months after the initial 'flu-like' symptoms. And, actually, was on abx for 4 months (somehow miscounted -it was late when I posted).
It doesn't make sense that suddenly it would 'pop' back up like this. Unfortunately there doesn't seem to be any really new research (i.e. past year or two) exploring relapse, new cases and also repeat blood cultures.
I understand many people suggest using 'special' labs (i.e. Igenex) to interpret blood results, but I'm not ready to spend that kind of money at this time.
I see what you're saying about not making a difference with the blood test, but do others get repeat tests for lyme, and if so, is there a change in the IgG and IgM levels with treatment?
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Hi Smiles. Sorry you have to come back....
When this sort of thing has happened to us, we've been fairly sure it's been a relapse -- our exposure to ticks and biting things has been minimal.
The only point at which it sort of matters if its from a new bite is this: if it's not a re-exposure, then you may be dealing again with a range of bugs you originally successfully treated, or never treated before. So you can't just think, well, I have a stubborn case of X and plan on a re-treatment.
If it isn't a re-exposure, then you evidently do have a stubborn case of X, and possibly of XYZ. Don't assume it's Bb. I now think our biggest problem has been babesia or bart.
Bloodwork has been an unending frustration for us. I'm always either equivocal or negative for everything, despite being very symptomatic and responding excellent well to tx. The hubby is always CDC positive for Bb, but negative on the PCR for babs (no doubt that he has had that and responded very well to tx). Dunno about bart -- gave up on testing.
We're in good shape re yeast and all kinds of detox, so I know that's not our problem.
It's worth testing up to a point, I think. It's always wonderful to get confirmation of what you have, but you just can't trust the negative tests.
The most important think is to gallop immediately to your LLMD. If this isn't LD/Co, no harm done -- not everything is, after all. But I'd consider it a strong possibility.
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
ooops, double post. But since I'm here -- re whether you ever test negative, I think that depends on what test you do. Antibodies can hang around a long time, even when the bug is gone. Or your immune system can be so overwhelmed by infection you quit making the antibodies even when you're heavily infected. Or you're not looking for the right antibodies....
But if you do something like PCR or FISH or QRIB, that looks for the actual bug itself -- if you don't got it, you're going to have a negative test. But if you do got it and it doesn't show up in that particular bit of blood, or you have a strain that doesn't show up with that particular bit of fluorescence...well, it's a muddle.
[This message has been edited by minoucat (edited 16 May 2005).]
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