Going off antibiotics?

[gmcnj]

Hello all. I have not been here is some time. I'm sorry to see many of the same folks still here (though glad you're all getting such great support!).

I've been seeing the same LLMD for three years, and have been on abx for 2.5 years. I've been on many: augmentin, penicillin, cipro, levaquin, cefzil, doxy, IV rocephin (6 months) and ketek for the past 8. I've also been on artemesia for the past 4 months, though whether I have babs is unclear.

I have had no improvement, and in fact am much worse off than I was three years ago.

I just saw a new LLMD who is a naturopath. He wants me off of almost all meds (abx, artemesia, plaquenil), at least for a while so that my immune system can regulate itself. He will then assess whether I have babs, and treat it, as he thinks I've had very heavy lyme treatment and babs should have been eradicated first if it is present.

I love my current LLMD, but feel like a fresh perspective is necessary after all this time without improvement. Switching is a huge decision. So is going off abx. The new LLMD was recommended by several other area lyme patients, knows Dr. Bs guidelines, etc.

I asked whether going off abx was risky as I'd stop controlling the lyme. He said, "you don't actually seem to be controlling it now." Good point?

Is going of all abx risky, in your opinion? Has anyone taken a break in order to change directions?

Thanks for any ideas!

gmcnj

[6Blues]

gcmnj

Sorry to hear that you're feeling bad after with so much time and medicine invested.

I once went off all abx for about 2 weeks. No affect whatsoever for me personally.

Good luck and good health to you!

[ticker]

Hi gmcnj. I have a couple of questions for you. Have you herxed on any of the meds you have taken? Have you been tested for the co-infections recently?

In my non-medical opinion, if you have Lyme and/or co-infections, going off antibiotics is risky. I base this on correspondence with others, not any personal experience. I believe that while alternative methods can help support the immune system, antibiotics are necessary to kill the bacteria. If you do have Babesiosis, it should be treated first. It can be difficult to eradicate and may be one factor in your response to treatment.

I recommend getting tested for all co-infections if you have not been tested for them recently.

You need to do what is best for you. Let us know what you decide okay?

[outinthe_woods]

Hi, GMCNJ!

I second what Ticker says and also want to mention that some of us who are feeling and doing steadily better have promised to stay on here to help where we can.....

[gmcnj]

Thanks, gerribear and 6blues!

Ticker, I've been tested for babs in the past six months. Negative. I don't believe I've been tested for bart or erlichiosis recently. My current LLMD says if I had ever had them, the abx I took early on would have killed them (?)

I herxed on a relatively low dose of doxy about a year ago ... that's when I finally had a positive lyme test. I was being treated then for reactive arthritis, and was put on doxy as a 'maintenance' break from the other abx I had been on. Up until then, on the other abx, I had had a slow but steady increase in arthritis-type symptoms (new joint involvement, increased tendon pain) but nothing I would classify as a herx.

I was put on Rocephin almost immediately after having the positive test. I definitely herxed on that, with mild hallucinations, nightmares, increased nerve and joint pain, etc. I started Ketek about a month into the Rocephin, so it's hard to tell whether I had a separate herx from it or not.

Since having done 6 months of Rocephin, and being on Ketek now for 8 months, I've continuously had much more skin burning and an overall 'vibrating' feeling. Otherwise, I continue to have serious joint and tendon pain and fatigue.

The new LLMD proposes to retest me at (the "I" lab .... can we say lab names?) for coinfections as well as lyme after I've been off meds for a short while. I've never had tests done there. In the meantime he's doing hormonal testing, and is planning to do a yeast test with a microscope using blood next time I see him.

It's so hard to know what to do! I don't go back to the new LLMD for one month, so I would be off abx (and enbrel and plaquenil, which I was on for the joint inflammation, acycolovir for mildly elevated epstein barr, and artemesia) for at least that long.

I really hate that there is so much uncertainty with treatment for these diseases!!

gmcnj