You are so lucky that you we're able to get a positive babesia test. Since it lives in the red blood cell it is so difficult to pickup. Did your insurance cover Igenex at all? I would do Igenex but it is just so expensive.
I actually do not know exactly if I have babesia or not. A year ago I tested positive for lyme through the westernblot. I treated lyme alone with antibiotic combinations until last november when I urged my LLMD to start me on coinfection treatment. She agreed and we started with babesia. I was (still am) having lots of symptoms that line up with bart and/or babesia. Night sweats, air hunger (slight), fatigue, brain fog, dizzyness, anxiety, heart palpitations, foot pain in the morning, tingling/twitching in face, headaches.
I then had a followup with her in January and we paused treatment for a month since I was traveling to Italy for work and she wanted to run some tests to pinpoint the coinfection I have because the two months of mepron and zithromax wasnt helping me much just increasing symptoms. I told her I think it's a herx because so many people say that they feel terrible for the first 2-3 months before we see a turnaround in babesia symptoms, and she kind of disagreed but let me continue treatment for babesia last week when I got back home.
So - all the tests came back negative from the lab she ordered. I then asked to do the babesia and bartonella testing through LabCorp (still not reliable but i figured it was worth a shot) and those just came back negative as well.
However, I think all these are incorrect. I would be willing to do Igenex but isn't it like 1,000 bucks?
Sorry I have been rambling so long story short, I am telling my LLMD I want to treat based on symptoms not my test results. Many LLMD's do this including the top ones Doctor J in DC and Horowitz. They both treat babesia and bartonella regardless of testing. So, there is no reason why I shouldn't especially when I have hallmark symptoms.
Now to finally answer your other questions
With your babs treatments, have you taken any breaks? If so for how long?
Here is my babesia treatment so far - I started in November right before thanksgiving because I was off from work that week. I took the mepron and zithromax all the way up until I started traveling for work. I then took a month break - mid January to mid February. So now i have started everything up again last thursday. So far I just feel more "out of it" and fatigued. We will see if I go back to how I was before I stopped which was pretty intense head pressure and some disorientation. I will say that even after 8 weeks of taking it, I still felt pretty crappy. But after I did a 4 day break around Christmas it never got back to as terrible as it was before that 4 day break.
I am so happy I am helping you. You are helping me too! Seeing someone else going through the same thing helps ensure us that we are on the right track and we are not alone! Have you done any bartonella testing or treatment? And did you only treat lyme for 3 months?Insurance does not cover Igenex testing as far as I know, I paid a total of just under 600 bucks for their western blot igG and igM for Lyme, and the babesia microti and duncani igG and igM. If you just do babesia testing it should be less than 300 unless you go for a couple of their other tests... I think they have a FISH and one other one, my LLMD selected the tests for me. I don’t see him for 4 more weeks but when I do I can try to get a copy of the price list. I have only done the standard quest bartonella testing, and never had the type of pain you’d associate with bart, plus if I am
Not mistaken the same meds that cover Lyme also treat Bart. I did only treat Lyme specifically for 3 months because I basically hit a plateau at that point and discovered the Babesia (which is probably why I plateaued, tough to get rid of one without addressing the other.). However, Tetracycline/Doxy were included in my newest regiment to address both Babs and Lyme (LLMD says Mepron is a mild cyst buster so that plus doxy/zith is essentially going after both those bugs. To me, Tindamax was the best drug to get results from with Lyme, have you tried it yet, it’sin the same class as flagyl. I was taking it pulsed (Friday sat sun) plus doxy and zith, and lemme fell you the second and third weekend on it gave me a big herx (mostly fatigue which is so much better than this Babesia herx).
As far as babs, my best friend did 2 months Mepron and zith, and then 2 months malarone and zith (due to cost, mostly) and then pulsed 2 weeks on 2 weeks off for a few months after. He then took a few months break and yesterday finished up his final treatment. He says he is 99% better but 100% mentally done after nearly 2 years From tick bite until now. He said the Mepron did make him feel down on occasion but lucky for him he never herded on it. The malarone he says he’s never felt anything but it’s supposed to be more tolerable for some. Tonight is my 1 week mark of being off Mepron and I’m still herxing... i hope it clears soon so I can get back to treating!
I just took my first ever epsom salt bath at your recommendation, hoping it will make a difference tomorrow!
While you were on your break from babs treatment, did you still have babs symptoms? It may sound silly but for me, I never really had anything other than mild anxiety for babs symptoms, and now I’m afraid of what may happen now that I’ve woken it up for the first time.