Questioning my lyme results

[vamah]

Yes, azith does have some activity against Lyme bacteria, specifically it is thought to work well against the l-form of the bacteria (with the other forms being spirochete and cyst).

The symptoms you describe are the ones I get from Bb...specifically dizziness and headaches. Of course, they could be from other things as well unfortunately.

There aren't any cut and dried rules on the abx challenge. I would think 2 weeks would be a bit short and 3 months a bit long. If it were me, I would aim for 4-8 weeks.

You only have to be off abx for the testing if you are doing the Infectolab testing. A typical WB like done by IgeneX is not affected by abx.

It would be unusual for a herx to start a week after stopping abx. But I would never say never...more likely a flare up of symptoms or the immune system.

Let us know what the doctor says! I hope you are able to work out a plan that feels right to you...

Thank you Ema. I will let you know how it goes. One thing I guess I explained wrong is that symptoms began a week after STARTING abx, not finishing. Was just one day after finishing.

 

[vamah]

So, I saw my doctor this morning and layed out what I've said here. He told me that he wished he could say that I had no reason to be concerned about lyme, given my symptoms, but he didn't think that was true.

On the other hand, he doesn't have a lot of confidence in lyme testing -- mainstream or "alternative" -- for anything but new acute infections. He says if I want to spend my money doing the anibiotic challenge test with igenex then that's my decision and there's no harm in it, but he isn't sure it is worthwhile. He is more inclined to base his diagnosis and treatment on symptoms.

So we are going to do a kind of poor man's test. I will go on abx for a month and see what happens. If I want to do another (sketchy ) igenex test at that time, I can. But it may be more useful just to see if I feel better after a month of abx.

In truth, what he wanted me to do was not deal with the lyme question right now, but concentrate on hhv6 treatment to see how that helps me. I think he also realized that wasn't going to satisfy me, so we had a negotiation.

I am just 99% sure this was a herx and it wasn't just from a minor infection, but something systemic and neurologic. Of course that infection is not necessarily lyme.

 

[Ema]

That all sounds very reasonable.

Did he hopefully give you a combination of abx?

Ema

 

[vamah]

Decided to start taking cats claw a couple days ago because had read it can help kill lyme in biofilms and figured either way it couldn't hurt because it is supposed to help immune system. Not not sure if I am having herx from the cats claw. Sleep has become very bad again even with meds that had been working, but time change from daylight savings could be affecting sleep. Woke up with sore throat and bad cough this morning. Wonder if just some low lying bronchitis that cats claw is fighting, but have been on abx for a couple weeks now. So many ambiguities . . .

Reason I am concerned about biofilms is that I have been on lonv term doxy a couple times for unrelated issues. Had read that, while doxy is good for acute lyme, can drive chronic lyme into biofilms and is why it is always used in combination with other abx.

 

[Ema]

Decided to start taking cats claw a couple days ago because had read it can help kill lyme in biofilms and figured either way it couldn't hurt because it is supposed to help immune system. Not not sure if I am having herx from the cats claw. Sleep has become very bad again even with meds that had been working, but time change from daylight savings could be affecting sleep. Woke up with sore throat and bad cough this morning. Wonder if just some low lying bronchitis that cats claw is fighting, but have been on abx for a couple weeks now. So many ambiguities . . .

Reason I am concerned about biofilms is that I have been on lonv term doxy a couple times for unrelated issues. Had read that, while doxy is good for acute lyme, can drive chronic lyme into biofilms and is why it is always used in combination with other abx.

I found cat's claw to be very strong. I didn't care for the way it made me feel. I don't even think I finished the bottle which is unusual for me.

I also know that Buhner says that the TOA is fine in cat's claw but I'm not sure that I agree. I still think that there may be some deleterious effects of the TOA.

It's possible that this is one that just doesn't agree with you.

I had much better luck with Grapefruit Seed Extract for the cystic form of Lyme and I also used lumbrokinase to get at the biofilms.

Ema

 

[vamah]

I found cat's claw to be very strong. I didn't care for the way it made me feel. I don't even think I finished the bottle which is unusual for me.

I also know that Buhner says that the TOA is fine in cat's claw but I'm not sure that I agree. I still think that there may be some deleterious effects of the TOA.

It's possible that this is one that just doesn't agree with you.

I had much better luck with Grapefruit Seed Extract for the cystic form of Lyme and I also used lumbrokinase to get at the biofilms.

Ema

After reading posts about cats claw, I think I started with too high a dose. Cut dose in half yesterday and also took in afternoon instead of evening and not having such bad reaction. What is TOA?

Starting to feel maybe I'm nuts to keep pursuing lyme issue when had negative igenex result. Maybe I just need to be more patient about seeing results from valcyte, as I know for a fact I have very high hhv6. Or maybe just in denial about whole ME issue. Just really would rather have lyme, as difficult to get rid of as it is, than degenerative mystery illness that doctors don't know how to treat.