I suffered for years before finding out I had lyme disease. I started IV antibiotics in Jan 2014. I was starting to feel better when on the IV. I wound up with bacteremia July 4th weekend and they pulled the pic out at the hospital. I then was put back on oral meds. I actually feel worse than I did last year. I am in constant pain , have memory loss fatigue and feel horrible. My doctor did blood work VEGF and told me my levels are high and I have Bartonella. She added rifampin along with my Doxy. I feel so lost and unsure if I am on the right path. I have been on antibiotics for over a year and do not see any results. Some times I wonder if I should just stop taking everything and see what happens. Has anyone else had the VEGF blood test? My doctor tells me Im not better because of the bartonella and now that we know I have it I should see improvement because we are treating it with rifampin. So far its a month and I dont see an improvement.
By VEGF do you mean Vascular endothelial growth factor? VEGF, a polypeptide is a substance made by cells that stimulates new blood vessel formation and increases blood flow in the capillary beds. The biotoxin nuts (The mold people) talk a lot about VEGF, but its usually low levels not high. This is the first time I have heard of anyone trying to use it to prove Lyme or herx type toxins. In any event that raise a lot questions about your doctor.
I'm sorry about the bacteremia, that must have been terrifying... They don't tell you that stuff. I can't advise you what to do but you have thrown just about everything including the nuclear option (Pic Line) at this. When they start blaming coinfections I start getting worried. Rifampin along with my Doxy would have obliterated bartonella in a couple of weeks if you had it. (not to mention lyme)
Yes that is what I mean my vegf, I was told that a high # indicates that a lyme patient has a bartonella co infection. Considering the fact that I have not been feeling much of a releif from the treatment the past year it seemed logical to me that I possibly have the bartonella and was not on the right meds.
What are your thoughts on the cd57 blood test as a marker for how well the treatment is working , also the cd4a blood test for level of infection. When I started this journey in the fall of 2014 my cd4a was in the 4 thousands my last test in february was over 17 thousand. I feel so lost and confused and unsure of the path that I am on.
I'm so sorry to hear you are having all the confections, but it sounds like you have a pretty decent doctor and I hope your insurance is better than mine and they are paying for your treatments and IV antibiotics.
I was much like you at one point...I had gone through all of the oral antibiotics and moved to the IV. They had me on two different IV antibiotics, and like, you I was close to giving up although my doctor assured me we would eventually find the right one and it would make me feel better. The next IV antibiotic was Vancomycin (sp?) and after being on it for three weeks I started to feel so much better. Unfortunately, it was at this same time that my insurance company informed me they were not going to pay for the 4 months I had already done, so I had to stop because of financial issues.
My doctor told me to do the 30 days of a particular antibiotic and if I wasn't feeling any better to move to the next. I'm not sure of bartonella and I don't recall ever receiving a VEGF blood test, but it sounds like your doctor is on top of it and I'm really happy to hear about that. I hope you get your other issues resolved and are able to continue with the IV antibiotic treatments and you are able to find the right one to get you well.
It does help, thanks for replying! Just hearing from someone else that has been through it helps when I get doubtful. My doctor is really good she is very passionate about lymes because she has two children who had it. We are in the process of trying to get approval for the IV again. Im hoping they approve it although I know theres a good chance they wont. Otherwise I will have to keep trying different oral antibiotics becaue what im on now dosent seem to be doing much.