Thanks Jackie. Maybe what I have is Bartonella then. You're the first person I've found who has had vision loss similar to what I have. My LLMD just gave me a test lab kit for different co-infections. To tell the truth, I haven't found any detoxing routine to be particularly effective for me. I've tried epsome salt baths, I drink lemon water every night. I was taking Cohen's detox herbs. Drinking lots of water. Nothing seems to have eased the herxing. Now I'm trying abx pulsing, thinking that taking a week off abx will allow my body to naturally flush out the dead spirochetes.
I guess when I get my test results back, they'll tell me if I have Bartonella. I'm not sure if Bartonella is one of those co-infections that is difficult to get good feedback on, aka - false negative. I had an igenex test for lots of co-infections, and the only thing that came back positive was Lyme. But my LLMD said that igenex is not reliable, so he's got me taking some different test which he says is reliable.
My LLMD doesn't seem to be interested in prescribing anything injectable, otherwise I would definitely ask him to prescribe a glutathione IV. I believe I have some glutathione supplement pills around. I can try taking those again, to see if they help.
I just had one of those fun Lyme heart attack type of things tonight. I guess it's not a real heart attack. That's just what I refer to them as. You jump up in the middle of the night because it feels like your heart stopped, then your heart starts beating ferociously. Then it gets weaker and weaker pulse until you can't even feel it anymore. Feels like you're going to faint and/or die. It's probably lyme carditis, I'd imagine. Do you get this?
I get it about once a month. I think it might be doing a number on my heart muscle.
Testing means very little. Many false positives and negatives. I didn't test positive for bartonella for almost 2 years after I got symptoms and many don't test positive at all. This is why ILADS says a Lyme diagnose and coinfections is largely a symptomatic one. Yes vision issues is a BIG ONE for bartonella. "When neurological symptoms are out of proportion to other symptoms think Bartonella."
Based on your abx regiment I would say your doctor is very aware you could have Bartonella and is treating you with proper abx. Perhaps you need to ask more specific questions about
what your LLMD feels you MIGHT have?
I would avoid starting and stopping rifampin without talking to your doctor. I have dosed down because of pain but never stopped outright. It may cause bug resistance and cause more issues later.
The heart palpatations are just part of life. Sorry. It's no fun. It is also another sign you have too many toxins and need to detox more. That is the only way I got rid of them. Glutathione is not a prescript
ion. You have to find a wellness center willing to give you IVs and it is not covered by insurance. Colonics or enemas also help alot to detox. Not fun but when it means keeping brain inflammation at bay I do them.
Zeolite is a good binder for toxins and easy to take.
IGENEX is a good lab for lyme. Generally galaxy diagnostics is the best for bartonella tess as they have many other strains they test for........ http://www.galaxydx.com/web/
Babesia duncaii, tularemia, mycoplasma, protomyxzoa, dengue fever - in remission. Bartonella still hanging around.