Off antibiotics & symptoms coming back

After 16 and 1/2 months, my LLMD had me stop my antibiotics since 12/17 since I've been doing so well (according to her). Blood tests are always good. The horrible herx / relapse (who know what they really were) I had each month got shorter and less severe, and I felt better and better. According to my LLMD, I'm the best patient she has in term of following the treatment plan, and pretty much the most dedicated to getting better.

Well, lo and behold, after 1 week of being off, which would be right on the date I usually got back on my antibiotics (my last antibiotics schedule was 2 week on 1 week off), my soles are sore & aching, ankles / joints / muscles / fingers / hands are hurting, tingling on my toes, and my finger tips. Once in a while the flare in my head come back too.

I'm really scare, and not sure what this means. Am I relapsing, herxing? It shouldn't be relapsing since it's way too quick. Does this mean we didn't get all of the bacteria, the co-infections?

Should I tough it out until my next appointment with her in 5-6 weeks, or should I get back on antibiotics since I still have some of those available?

Will this be something I have to live with for the rest of my life? I really don't know what to do.

happened to me too- symptoms came back when I stopped abx. Now I am researching everything I can to find another way to treat this!

Our daughter weaned from abx in April 2013 to Buhner's FULL protocol for bartonella and then we added the babesia protocol in Nov 2013. She has been pretty much asymptomatic since then although she remains on low doses of the herbs.

Thank you for all the responses. Well, when my LLMD told me to stop abx at my last visit, she told me to hang in there until my next appointment.

Anyway I put myself back on abx, and also began Samento & Banderol. Samento & Banderol are what my LLMD asked me to take after stopping the abx anyway (but they didn't get here soon enough). It's been 2 days, the symptoms are still here, but less severe.

Katebirch & DazedPete1, hope you guys are getting better, and find a way out of this. This is, for me, more than frustrating; it's right down scary. I've pretty much been focusing on getting better and had thought I saw the light at the end of the tunnel...and now I'm not so sure.

My husband and I are discussing the possibility of getting PICC line for abx at Dr. J office in DC (our son goes there to treat his Lyme & co-infections). Anyone has experience with that? Please share. It will cost us a arm and a leg, but if it can get this thing down for good, we are willing to go through with it (as long as it's safe too).

Rowingmom, yes, I've heard lots of people were "weaned" off abx, which make me wonder if my problem is because mine was pulled off "cold turkey". Do you know how long your daughter will have to be on low dose of herb for?

Post Edited (RC2013) : 12/28/2014 11:41:02 AM (GMT-7)

Because the immune system is not really required to function properly during abx treatment (the abx are doing all the hard work), weaning may help the immune system to come slowly back on line.

Buhner's protocols include herbs that help to support/improve immune response which is necessary because without proper immune response relapse is inevitable (there will always be that one bacteria/virus left). This is the reason why lyme and it's coinfections are so difficult - they are all very immune suppressive.

I have no idea how long we will be treating with herbs. I am now simply enjoying the both of us being asymptomatic. We will probably give it another year anyway while I investigate sauna, homeopathy etc.