So for those who have been following me, I've been treating for acute bart/possible babs/and yersinia for the past 9 weeks now. I'm sure I have bart (galaxy ++, quest ++), babesia is a possibility based on my air hunger (igenex borderline), and yersinia (quest ++ 2x). I was confirmed by my last two doctors that I indeed do NOT have lyme though because testing was always inconclusive (although I tested positive for 1 specific band p23 on the western blot multiple times) and I never had any joint pain. Just to remind you guys, I have never had ANY health issues and was perfectly healthy, athletic, 28 year old male gym rat with a full time job and extra-curricular on the side before getting SUDDENLY sick on vacation in Korea back in December and then my living hell began searching for what is causing all my weird symptoms.
Anyway, back to my current treatment protocol. First couple weeks were rough, then I started to notice improvements with my energy level and severity of symptoms with some of them subsiding around week 5. But the last week or so it seems as if I've hit some sort of wall...haven't been noticing much improvement and more crash days. My primary symptoms now are:
-head pressure (behind nose, temples)
-random bone pain (chest, ribs, bottom of foot)
-slight air hunger
-anxiety/depression for no reason
*I find myself just nervous and crying for hours at a time for no reason.
-tingling in hands and feet
My current regimen includes:
-clarithromycin 500mg 2x a day
-artemissinin 1 tab 2x a day
-rifampin 600mg 1 a day at night (on empty stomach)
-serropeptase/lumbrokinase/NAC for enzymes
-liposomal glutathione/milk thistle for detox
-hydrocortisone/t3 for hormone support
-probiotics 2x a day
-mag. threonate for detox(?)
-LDN 4.5mg a day for immune support
-celebrex 2x day for pain
-claritin/zantac/zyrtec for MCAS
-epsom salt foot bath daily for 15 mins/lemon water/ASGx2 for detox
My LLMD told me it would take around 4-6 months to feel much better but to tell her when I plateau and she is thinking of adding in another tetra like mino or doxy because we aren't doing anything to treat the active yersinia.
Also, she discussed adding plaquenil to my regimen as well..not sure what that was for..
Currently, on my "good" days, I am symptomatic 2-3 times a day for maybe 30 mins-1.5 hrs at a time and it's usually manageable with only 1 or 2 of the above symptoms.
On my "bad" days, I am symptomatic 2-3 times a day for around 1-2 hours at a time and I'm almost bedridden and so fatigued and feeling so sick that it even affects my appetite and cannot function much at all.
My followup appointment is coming up this Monday. But my lingering questions before the appt are:
-am I indeed plateauing? or is this just an extended herx? or is it too early to tell?
-would it be wise for me to add another abx like mino/doxy? plaquenil?
-I noticed that some of my more symptomatic days I happened to have exerted myself significantly more.. I know PEM (post exertion malaise) is a ME/CFS thing but do bart patients get that too?
-any other advice for recovering quicker from bart? should I combine some herbal remedies as well like hottuynia? I'm just getting the feeling maybe I'm not hitting the pathogen load hard enough?
Thanks everyone! Hope you all find healing soon.
If you got infected in December last year....and only started treatment in July or August - that's not really an acute infection.
I'm surprised a LLMD would say you don't have lyme with band 23 showing up...and whatever gave you bart and babs likely did give you lyme too.
Were the two Doctors Lyme Literate (who said you don't have lyme)
FYI - not everyone gets joint pain...a llmd should know that.
But...lyme can be covered by treating the bart and babs.
You've been treating for a relatively short time (less than 2 months?) It can (and usually does) take longer than that to have a significant improvement.
You've had some improvements...and that is great...many go months before having a change for the better.
I think adding in minocycline is a good idea...or exchanging the biaxin for mino.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi