This is topic still off abx ... in forum Medical Questions at LymeNet Flash.

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Posted by burnbitter (Member # 7088) on :

I've been off antibiotics for 2 months now. I'm feeling much better. I am doing a pulse of zithromax during the time I expect a herx. This month I actually got the flu at the same time I should have gotten a herx, I think... but who can tell for sure.

In case you don't remember me...
I probably got Lyme in 1986 in theory we don't really know for sure. I finally got a positive test from Igenex in December last year and started treatment. I had both Lyme and b. microti.
I started with zithromax then added mepron for 14 days...after that I switched to hydryoxychlorquine. After the first month of treatment, we did 4 months of IV argentyn 23 (silver hydrosol) in addition. I took huge piles of supplements to increase my immune system. When my veins could no longer tolerate the IV shots we stopped. I tried flagyl and tinadamax which both made me really sick and I couldn't take them.
At some point we also added minocycline cream.
The zithromax seemed to plautea so we switched to ketek which after a month I had to stop because of intolerance. So back to the zithro/hydroxychlorquine and we added mepron back to make sure the b. microti was treated.
Eventually this all just seemed to be not making me better anymore. And I had a lot of neurocognitive symptoms which we couldn't tell what was causing them.
So we stopped everything. After about a week I felt much improved. And the weird brain issues seemed to disappear. An MRI came back okay.

We tested everything thing again to see where I was at.
As my joints had been puffy we tested some joint fluid for lyme which came back negative, as did my b. microti test. We also did another full run through of bloodwork to check my vitamins, hormones, and immune system.

For now we're focusing on my immune system which is very flared up. My allergies are terrible. I started taking Danzol as my testosterone levels were somewhat low, and that can help calm the immune system. So I started that a couple weeks ago.

I also started a yoga class about 2 months ago. Which has been great. I do have to be careful not to overdo it but it's really helping to get me back to my normal self.

At some point I'm sure I'll have to go back on the abx fulltime. But for now, things are pretty good!


Posted by seibertneurolyme (Member # 6416) on :
It's always nice to read good news !!!!!

Have you thought about or tried Reishi for the immune system? The Pharmanex brand is expensive -- about $100 per month but it is the only brand which seems to do much for hubby -- it is supposed to have cracked spores and I haven't found any other comparable product. This is the one recommended by Dr B on Long Island.

You might also want to consider some of the herbs in the new "Healing Lyme" book. Just go a lot slower than book suggests when increasing doses until you see how you respond. This might be a viable option to antibiotics for you.

Bea Seibert

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