Despite the fact that I'm not improving, I do not take that to mean that something else is causing my problems other than Lyme and co-infections. Since all of my tests were "fine" and doctors didn't want to do anything to help me without abnormal blood work, I was on my own until finding a LLMD. I am very fortunate to have found one quickly. Although I have a strong mistrust of doctors in general, I do have some confidence in the LLMD that I am currently seeing. I believe that he has very good intentions and really nothing to gain from attempting to treat these infections.
So far, we have not used any medications or herbs that specifically address bartonella. I have always had suspicion that I may have had bartonella, but because I was afraid to go on levaquin and cipro, I never focused on the bartonella symptoms when I spoke with my LLMD. To be completely honest, I've tried to hide a lot of the bart symptoms, especially the psychological ones. I'm worried about having psychological things notated on a permanent medical file. I'm not sure how that works or who may have access to that in the future.
From the Checklist E-Book by Schaller, these are the bartonella symptoms I have right now or have had in the past:
- Brain Fog
- Obsessive thoughts or fear in excess of an event
- Obsessive thoughts that intrude into the mind which are in excess of normal (germs mainly)
- Persistent rashes that last over 3 weeks
- Nodules under the skin
- Red Papules of any size
- Stretch marks (mine are not typical of bartonella, they're white).
- Skin tags
- Minor cuts or scratches heal slowly
- Blurred vision
- Arrhythmias of the heart
- Palpitations unrleated to panic attacks
- A temperature under 98.3
- Sore throat with no clear reason
- Unusual discomfort on soles of the feet
- Puffy tissue on ankles
- Bone Pain
- Joint Pain
- Muscle Pain
So because I have not had a great response to treatment, my LLMD asked me if I would be comfortable trying to go after bartonella. I was actually really happy to change things up. I am glad to be off Mepron for a while. I didn't feel like it was helping. The new plan is to stay on Doxy and add in Rifampin and probably add in a macrolide at some point. I will be pulsing Rifampin first at a half dose and then at the "full" dose followed by a rifampin break.
I am a little worried about the herxing. I was warned that it may be bad. I took my first dose today and the first thing I noticed was a sore throat returning within about 30 minutes of taking the medication. It feels like swollen tonsils. I'm most concerned that some of my neurological symptoms will get worse like paralysis/numbness in my limbs, twitching, seizures, headaches, etc.
The other thing I'm worried about is my liver enzymes. I know rifampin can be tough on the liver. I have been having unexplained liver enzyme elevations since before I even knew I had Lyme. It was pretty much my only abnormal test result; high bilirubin, the doctor said it was Gilbert's Syndrome but I don't think it is. A few times it has lowered to normal levels. The other day it went up even after I stopped meds. My ALT and AST have also been elevated several times.
My LLMD is usually obsessive about checking liver function (weekly and sometimes more than once per week). For some reason this time he's letting me go a few weeks without a test. I'm happy to have the break, but I hope my next test is not going to be alarming.
So I hope that this new plan works. I was getting really worried and upset that I wasn't improving but I'm in a much better mood now that I'm starting a new protocol and targeting a different infection. I'm hoping that something positive will happen with this combo.