LymeNet Flash: question for those who tested seronegative

This is topic question for those who tested seronegative in forum Medical Questions at LymeNet Flash.

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Posted by kumba (Member # 7733) on :

Hi,
I posted before about sero negative tests in people who have lyme disease. I now know it happens often. This is my question...according to DR. B in NY (LLMD) 55% of pts with Chronic lyme ARE seronegative. They can be amongst the sickest of the group. If insuracne wont cover IV therapy with neg results and it seem to be the way to go...what to do????????? I guess this is what meant by the politics of the diesase. It DISGUSTS me. How many of you have converted and when did you get retested after RX?

Posted by daniella (Member # 6753) on :

Hi there Kumba..

I have converted after 5 years of abx. Now my tests are positive..Before the only ones that were positive were pcr's...

be well
daniella

Posted by Lymester (Member # 5848) on :

Okay, I'm still learning so

1. if I get treatment for chronic lyme then

2. get tested after what appears to be successful abx treatment

I might finally get a positive read from the bloodtest??

Kumba...When you say converted, what do you mean? That the test results are different?

My very first test as IND, but that was almost 10 yrs ago and I don't know where that test would be. Every other test I've had has been NEG.

Daniella? what are pcr's?

Lisa

Posted by agszafran979 (Member # 7069) on :

quote:
Originally posted by kumba:
If insuracne wont cover IV therapy with neg results and it seem to be the way to go...what to do????????? I guess this is what meant by the politics of the diesase. It DISGUSTS me. How many of you have converted and when did you get retested after RX?

There is always the option of oral antibiotics. For example, I've read that high-dose oral amoxicillin (like 3000-6000mg/day) taken for a long time has helped people. Insurance cos have less of a problem paying for that kind of treatment - after all, amox. is prescribed for sinus infections and stuff all of the time. Even if your ins co doesn't pay, amoxicillin and doxycycline are actually cheap enough that you could probably buy them on your own without too much hardship.

-DS

Posted by Lymetoo (Member # 743) on :

Oral antibiotics work! It just may take awhile longer to get the "cure" this way. Don't feel like you have to have IV to get well.

I agree that the whole mess is disgusting!

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Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by kumba (Member # 7733) on :

HI lymester,
Yes many people test negative on WB, although they DO have Lyme disease. some convert to positve in some cases. there are a lot of reasons why some tes6t negative. problem is ins co. and many docs want to SEE poitive test to treat or confirm DX.
Thankyou Lymeto, I guess cause I've been sick for so long and having Neuro probs I think only IV meds will help. I am on doxc and havent given it a fair shot yet only been 5 days. NO herx yet!!

Posted by chainsaw joseph (Member # 6611) on :

Ive been on atbx for four years and am still a mess with all kinds of nuero and psych stuff.Im starting to think sometimes you do need IV.All my tests have come back negative,just did some a week ago,we will see.

Posted by ConnieMc (Member # 191) on :

I tested negative on everything, including coinfections, but after a year of orals, and then a year of IV, I converted to positive Western Blot, both IgG and IgM, and positive Babs FISH.

I have heard that the antibiotics force the body to become aware of the infection, which jump starts it to start fighting. I have also read several times that the sickest people are sometimes negative on all tests because the body isn't fighting at all. The infections keep the immune system from recognizing them.

If your only hold-up with the insurance company is not having a positive test, try throwing the toughest orals at it you can tolerate. Then test again. Along the way, continue to research the seronegative issue, and send all the info you can to the insurance company. The CDC itself says Lyme cannot be ruled out by a negative test. So how can the insurance companies deny that? Yes, I know, they do.

Sorry you are in that situation. I was once there too. Fortunately, I had the chance to get out from under that insurance and take much better coverage through my husband. Insurance companies are nothing but criminals. Don't let them win. Hire a health-care advocate or attorney if you have to.

Posted by arg82 (Member # 161) on :

I've always been equivical with the western blot or ELISA. I did have a positive PCR in 2001 but never had another positive on that. And I recently had a positive Q-Ribb from Bowen. But I guess I'm technically seronegative. Does it count when you're not platantly negative but have some positive bands on the WB?

My insurance companies (I've gone through a few in the last few years because my dad has changed jobs) have never asked for lab work to back up my treatment, even IVs, but they haven't covered it willingly, only after a fight. I guess I've been lucky because in the end I've been able to get IVs three times (twice with Rocephin and now with IV Clindamycin). I'm not sure how long my luck will last, though.

Peace and healing,
Annie

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