My symptoms started April, 2013..the Easter Weekend. Oh, how I remember it well...
I woke up from a nap after work...in excruciating pain - left side neck, shoulder blade, and completely limp, numb left arm.
Then more and more symptoms after that...which I ignored at first, but by the fall of 2013, I knew something was horribly wrong when I had vibrations in my body. (At that point I had about
I was diagnosed in July, 2014 - Igenex positive. my GP gave me two months of doxy, and I went to a NP and got a month of zithro.
Had first LLND apt. end of Aug. 2014. Unfortunately, he prescribed lyme only antibiotics until April, 2015 and then due to rising liver enzymes, I had to take a break . Back on abx in July, and added Rifampin end of August.
I have been on Mino/Rif or Biaxin/Rif since then except for another break of a few weeks last Spring.
I am still struggling. If I look at my symptom list - many have left (I think I had between 30 and 40 - can't remember - would have to check my notes) - I have less than 15 now I think...but my worst ones still with me - nerve pain, vibrations, shivers.
One of the more effective abx for bartonella (from what I've read) is the Fluoroquinolone class of abx (Ciprofloxacin, levofloxacin)
I would not take them (my LLND didn't even offer) - because they come with a black box warning - risk of tendon rupture, and more recently added Peripheral neuropathy (that can be permanent)
Another similar abx to Rifampin is Rifabutin. I am saving that if I feel I'm backsliding on the Rifampin.
Some people have used Bactrim with a macrolide (zithro/biaxin) - but from my experience it's often not effective for most people.
I think maybe if you haven't had the infection a long time - then the Bactrim combo would work?
I am going to a see my new LLND in a couple weeks - she is going to discuss what I've done and what my options are...she recently had a phone conversation with THE bart guru - Dr. Mozayeni. So, I'm interested in what she has to share with me.
Also, she is attending the ILADS conference.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to biaxin.
Post Edited (Girlie) : 10/24/2016 6:48:22 PM (GMT-6)