Hello, Long-time lurker here, newer member/poster. I've posted a few times in others threads, but my inner voice of "No one wants to hear your sob story" has kept me from posting my own tale of woe; so here we go (I tend to ramble so just skip to the bottom if you want :p )
October 4th, 2016 - Mystery bite/breakout of skin 'hives', given Epi, taken to ER - noted as 'bug bite w/ reaction' - was told I was fine. Went home.
November 2016 - January 2017 - Anxiety/Panic attacks are building; I've never had any of these before so I end up calling rescue 2-3 times (embarrassing) thinking I'm having a heart attack, but no - told im Anxious.
February 14th, 2017 - Wake up with severe panic/anxiety/numbness/tingling; convinced I have MS or some other awful neuro issue; Go to doctors - MRI/CT etc all fine. Told im anxious/depressed, offered various psych/anti-depressants at the VA I go to (diagnosed with PTSD due to service in Afghanistan, so they assume I'm just cray-cray.) I've been crazy for years and this is different, I tell myself. I refuse all meds.
March 3rd, 2017 - The wheels fall off. Severe illness, fatigue, neuro stuff (twitching in calves 24/7 and other areas on/off, burning legs/feet), nausea, inability to eat, insomnia, severe anxiety/panic/crying spells, the list goes on. I visit the ER 3 times in a week - again, you're fine - take your psych meds.
April 2017 - At work (yes, still working - I couldn't remember anything I did or how I even got to work most days) a friend said "Hey, that sounds like a friend of mine who had Lyme." Me: "Lyme Disease? Doesn't that just make you tired?" Google stuff - 1 hour later "Holy crap I have Lyme Disease."
Find LLMD - Change diet to Paleo - get testing for Lyme at Igenex and Bartonella at Galaxy Labs; Lyme test borderline; Bartonella Quintana 1:256 (Pretty dang high, according to my LLMD). calls me "Bartonella Poster Child".
From June 2017 - April 2018, I treat with combo's including Doxy, Rifampin, Clarithromycin, Azithromycin, Tindazole, Nystatin and Valtrex (for a reactivated Coxsackie B virus). I herx BAD for 3 months or so and then slowly improve.
May 2018 - My doctor shakes it up by adding Fluconazole instead of Nystatin; I also think it's a good idea to start Houttuynia and another herbal regimen (Vital Plan for those interested). I am an idiot. I not only herx, but develop a new symptom of light headedness / dizzyness, which now persists as my worst symptom. Sigh.
So - TL:DR - If I was 30% in March 2017, I'd say im 80-90% today depending on the day. Currently treating with Herbals (Houttuynia/Sida Acuta, Vital Plan (Dr. Rawls thing), and other supportive stuff, Curcumin/ashwagandha etc.), been off antibiotics for 1 month.
My remaining symptoms are the twitching in my legs, some mild fatigue/aches, and now the light headedness/ pressure on the top of my head. 1 - Is it possible to develop a brand spankin' new symptom a year into slowly successful treatment? I have a history of some concussions and other stuff, dizziness on elevators/escalators, lots of ear popping...lyme/Bart or unrelated? which leads to my follow up; 2. my LLMD wants me to start Bactrim, and then add Rifampin back in... It's a really tough call, and realize no one can answer for me... but I worry about
taking even more antibiotics after almost a full year on them with no breaks. My doctor is a firm advocate for treating 2 months after symptoms subside - but most of them have subsided save a couple. Do I just treat forever until every last symptom goes?
Thanks for your time!
