Hi sueg—
I don’t remember being bitten. But based on when sx started, my LLMD and I think I was bitten while on a business trip to Salem, MA over 15 yrs ago. I had gone wandering around town to see all the historic sites but when I got back to my hotel room I got very sick—flu like and remained sick all week. Shortly thereafter, I started developing thyroid problems, problems with my feet and legs hurting, night sweating, cognitive problems (memory lapses and word loss) and my personality started changing (agitated, more reclusive).
I have to say my sx were rather mild and sporadic up until the GI problems started and hormonal issues increased about
7 yrs ago. Then things started falling apart pretty fast. I was seeing an ND at the time but she never suspected lyme—blamed it all on stress. Even though I lived in NYC for 10 yrs and worked all over the NE I didn’t know anything about
lyme either. I didn’t make much progress with the ND. Years went by and I deteriorated.
The GI problems escalated and they tried to diagnose all sorts of things, Chron's, SIBO, gastritis, I forget all of them. The sx are so similar but not exactly so it's been a wild goose chase. Then things changed quite a bit after 2013 and 13+ months struggling with chronic sinusitis and bronchitis. I was in/out of Urgent care and the ER and they put me on course after course of various abx and steroids.
Soon after starting all the abx last yr, very obvious lyme, Bartonella and Babesia symptoms started to emerge and after lots of googling and researching, it was clear I had the infections and I started seeing an LLMD and got tested in Feb of this yr. My ELISA came up negative at first but the LLMD “provoked” a better immune response by having me take olive leaf extract for a month and then an IGeneX IgG/IgM came up “CDC-positive”, the holy grail as far as my insurance is concerned.
Initially, while we waited for lyme test results she treated me for a very high viral load (I was positive for about
everything she tested for) and it took about
2 months for me to start feeling any better. Then she started supporting my immune system and I started feeling a little bit better yet. I am so grateful she did this first before tackling the lyme—otherwise any treatment would have overwhelmed my body and I don't think I would have made it—I was so sick.
And then in May we started She started me on Byron White herbals for lyme and in June/July we started on herbals for Bartonella and Babesia (back in Feb, the Babesia test came up negative but most of my prominent sx are Babesia) and a Bart test came back positive. The lyme herbs (AL-Complex) did nothing for me even at high doses but the A-Bart and A-Bab did initiate some reaction so I am still taking them.
Due to my insane GI problems we bypassed oral abx (which she normally starts patients on who don’t respond to herbals) and after a lot of insurance ballyhoo I finally got an IV port installed a week ago Monday.
I mentioned a few setbacks in this thread:
https://www.healingwell.com/community/default.aspx?f=30&m=3242335&g=3242363#m3242363But for the most part, I am doing pretty well. I was very worried, given my previous reactions to all the abx that I would flare like mad but I really haven’t so far. Granted I’m on a very low dose this month so she’s taking it slow. I think she’s going to increase to 2g next month and I will also start taking Malarone for the Babesia. We won’t start treating the Bartonella until I make a lot more progress on the other two. She feels I will be in treatment 18 months. That was pretty hard to hear, but ANYTHING is better than floundering for the past 15 yrs not knowing what was going on or why or what to do about
it…and going broke in the process.
hope this helps—
-p