For those who have recovered...

Hi everyone,

So I am trying to make sense of my progress since I began treatment 7 months ago for my bart/babs as it has been so up and down. At this current point I consider myself 75-80% better ON MY GOOD DAYS. On my bad(Herx) days I feel a returning of all the debilitating symptoms that has kept me homebound albeit with slightly less severity and duration.

For some reason the herxing or downturn in symptoms tends to occur every 2-3 weeks. So I get 2-3 weeks of 2 steps forward and 1-2 weeks of 2 steps back. Although the step forward seems ever so slightly more than my steps backward.. it is sometimes so hard to tell because the symptoms are so non-specific (malaise, chills, nausea, fatigue, head pressure, bone pain, body aches, etc.).

I was feeling the best I felt in awhile 2 weeks ago at my last LLMD followup and she was telling me I could probably go off all abx in 2 months...and then...couple days later, I had a pretty bad herx that is lasted through this week and I'm still feeling lingering effects from it. Now I'm not so sure that 2 month timeline is realistic if I'm going to continue herxing like this every 2-3 weeks.

When I'm in the midst of my "good streak" I am very optimistic of remission. But when the herxing comes again, I get very disappointed and discouraged as I feel like I'm back at square one.

So, all this to ask...for those who have recovered...by the time you were off abx, were you guys 100% symptom-free? How do you know when is the best time to go off abx? Like are there cases where you are around 75% better and you go off abx and you get to that last 25% of recovery just from being off the medicine? I'm just so sick of taking over 100 pills a day...heck, I'm sick of always feeling like I have the flu.

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Acutely sick 12/2017
Doxy for 1.5 months 4/2018, plateaued
Diagnosed with Bartonella/Babesia/Yersinia with MCAS
Treating with biaxin/rif since 7/2018.
Added malarone 9/2018.
Added rifabutin 11/2018. => Currently on and herxing like crazy.

jb1994 said...
I don't think 100% is a possibility for many of us. I actually don't think I was at 100% before this illness. Right now my progress is like yours, two steps forward two steps back. I'm not on abx though. But I was on a treatment for a while and had a couple or a few years of being pretty functional, about 80%. It was an herbal protocol an it lasted about half a year. I was consistently feeling good, not having setbacks every other week. So I think if you pick a percentage that you feel comfortable with, and then wait until you're consistently feeling that good for at least a couple months, it might be an alright time to step off. That's just what I'd do though.

I am shooting for 100% of Lyme symptoms to be gone. The only 'thing' I had pre-lyme was some arthritis in my right big toe - which I think developed due to an injury many years prior.
I am expecting everything else to go with treatment. Lofty goals? yup...but I know it's possible because of people I know who have gained full health after.

If you had something pre-lyme - like arthritis in my case...or whatever - then no, you won't be 100% after lyme treatment.

But, there may be some time to heal needed...especially when it involves the nerves as they do take a long time in some cases.

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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

Post Edited (Girlie) : 2/9/2019 2:13:39 PM (GMT-7)

I am almost in the EXACT same situation as you... im 70-80% on good days and every 3ish weeks i have a huge flare/herx which i feel like im dead for about a week or sometimes longer. I also feel the same when you said you go forward 'ever so slightly' with these cycles.

Are your herxes on these days getting less worse? or are they getting slightly better every time? if theyre getting 'better' then youre probably on the right tack and should continue treating.

I'm with Girlie on this one - i'm going for near 100%. Ive got some badddd neuro symptoms which wont budge. I havent started using harder drugs yet either. Trying to find a small liver-enzyme offender in the mean time.

I wouldn't withdraw everything all at once. Id reduce dosage slowly over time and see whats manageable. Or if you havent already, introduce herbs and trickle off the drugs with those. Theres a few times ive seen people do this method throughout this forum.

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Currently @ 70-80%. Male. Early 20s.
Symptoms Jan-Feb '18; Treatment start Aug '18
Treating Babesia/Bartonella first.

Borrelia, Bartonella (clinical), Babesia (clinical). C. Pneumonia,
EBV, VZV, Yersinia, Coxsackie

Abx: Doxy, Azith, Pyrimethamine, Sulfadiazene, Valacyclovir, Plaquenil
Herbs: CSA, Houttuynia,
Supplements: Metric **** ton.

Symptoms: Occular, Neuro, Fatigue, Wasting

I never did ABX, but after 11 months post Infusio stem cells, I was only 70-80 percent and still having "flares" that had me on the couch all day, achy, depressed, etc. Your 2-3 time-frame seems to be cyclical. Have you noticed it corresponds with the full moon?

Secondly, I got tired of waiting for the treatment to work. At the end of December I started lowering my carbs and upping my meat intake. I am now full carnivore and my energy shot up like a rocket. I mean, it's insane! Nothing ever worked this fast. I'm two weeks into full carnivore and among the normal "adaptive" phase stuff (think keto flu - for me it hasn't been terrible compared to herxing) I feel almost totally normal. A lot of people are having good results. Something to think about.