So...overall I'm doing pretty well most days. I know many would kill to be at my level as I can work a full day, usually have decent energy, etc.
But...the past few months I seem to have gotten a bit worse. This is since I started treating Babesia with my current cocktail of Malarone, Mino, Zith, Nystatin, LDN, Abart.
Since starting this treatment I've noticed a return of my off-balance feelings form time to time (usually when I'm in a store). I also have been experiencing "hot" skin, like it is radiating heat...yet I have a low temp (97 deg).
This few weeks, I've noticed Wednesdays have been particularly difficult. I have malaise, I am very jittery / amped up with more anxiety (it has been gone for over a year.) I have more flushing of my face. I also notice the left side of my face feels odd from time to time...like it wants to twich.but it doesnt. I also notice that my muscles feel like they are electrified at times...particularly after I work out (weights.)
I'm really puzzled as to what could be causing it. I know Bart is still in play and know we have to hit it after I finish Babs treatment.
Are these Bart symptoms? Are they Babs symptoms due to die off / herx (I have Duncani)? Are they side effects of my high dose malarone?
I worry I'm sliding backwards as I honestly felt better a few months ago.
Ideas / comments / suggestions / wise-cracks?
** edited to remove dosages of protocol **
[ 10-19-2011, 07:36 PM: Message edited by: sixgoofykids ]
Posted by lymielauren28 (Member # 13742) on :
I've noticed that many people with Lyme and co have symptom flares in the fall...hang in there and I'm sure it'll pass!
Posted by Fuel1212 (Member # 29312) on :
How long have you been on LDN, or have you changed dosage?
Posted by blinkie (Member # 14470) on :
I think malarone can cause dizziness can't it?
Posted by ticksickfamily (Member # 22786) on :
Sounds like A-Bart may be doing its job and these are Bart herxes you are experiencing. My son is also in treatment for Bartonella and Wednesdays are his tough day too.He also has the twitching around his eyes and sometimes his hands.
Posted by TF (Member # 14183) on :
My lyme doc said that babs has a 7-day cycle and a 14-day cycle. I experienced both.
I had flares every 7 days like clockwork. So, when you say Wednesdays are worse, that certainly sounds like a flare every 7 days.
My flares later changed to every 14 days.
I didn't start getting these flares until I started treating the babesiosis. So, I actually think it is a good thing that you are noticing a flare every 7th day. That means babs symptoms to me.
When I reported the flare cycle to my doctor, he had me add artemisinin to encompass the flare. So, for you, you would start taking the art on Tuesday evening and take it until Thursday morning or a half-day after the flare ends.
The first week I added the art, my 48-hour flare turned into only a 6 hour flare. And, the intensity of the flare was greatly diminished from "put me in the nut house" level to "this is nothing to write home about." Honestly, it was like a miracle what the art did! It was worth its weight in gold!!
So, I strongly suggest you talk with the doc about pulsing some art. Burrascano says that art should be added "in all cases." ("Artemesia (a nonprescription herb) should be added in all cases." page 24) Artemesinin is stronger than artemesia, so that's why my doc uses artemesinin. Hope it works for you.
The way I knew I was done treating babs was when there were no more flares. They first changed to flares every 14 days, and then finally no flare at all.
You have to be on the look-out for the flare symptoms because they get very mild before they finally end. For example, on the flare day, I might get an overwhelming need to go to sleep at some time during the day. A 1/2 hour nap did the trick, but it was the overwhelmingness of the need that was the clue. I had to pull the car over in a parking lot and take a nap! There was no discussing it!
The only wise-crack I have for you is, "You know you have to feel worse before you can feel better!"
That may be what you are experiencing on your new, intense treatment protocol. See if the symptoms begin to diminish as the months go by. I trust they will.
Let us know.
Posted by penguingirl (Member # 28688) on :
Do you think A-bart will not be enough to treat Bart all the way?
Just curious because I don't know how long I can stay on Rifampin..
I thought last Wed/Thurs was awful for me too - but I am not treating Babs right now (will get back to it). So not sure if it is bart or babs or lyme..
Posted by bcb1200 (Member # 25745) on :
I've been on 4.5 mg of LDN for 18 months..since day 1 of treatment.
TF..I do pulse Artemisinin. 2 days of high dose a week (6 pills 3 x /day)
I've also noticed that I feel worse on days I juice for my morning snack / lunch. It's as if the juice is doing something to drive the bugs out.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by bcb1200:
This few weeks, I've noticed Wednesdays have been particularly difficult.
/ wise-cracks?
Okay, I'll bite .....
Your bugs can tell the days of the week?
I had trouble with Zithromax. I was fine on Biaxin, but felt fluish with Zithromax at full dose. My LLMD thought it was a cytokine response, so we just used a different drug.
Another thought is, could the juicing be causing a drop in blood sugar that causes some of the symptoms? I know not all can be explained by blood sugar, but some can.
Also, if juicing is new, maybe it's some kind of healing reaction or detoxification reaction.
Posted by beths (Member # 18864) on :
I too felt better a few months ago..on similar babs protocol. I hit a rough spot past few months, but I seem to be coming out of it.
I think with babs, it's not a straight feeling better climb-my LLMD said you can have bad weeks/month further along in treatment-should get better over time.
![[Big Grin]](biggrin.gif)