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On the abx this week 😖

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Posted 6/20/2022 4:46 PM (GMT 0)
Currently on maintenance and stretching my weeks off.
I think I went 6 or 7 weeks off this time.

The mino is messing with my head already. I just took the meds an hour ago.

Supposed to go for lunch with a friend this afternoon… we’ll see how that goes.
Posted 6/20/2022 5:09 PM (GMT 0)
Which infection are u taking it for?
Posted 6/20/2022 6:05 PM (GMT 0)

LabRatDeluxe said...
Which infection are u taking it for?

I treated extensively with DrJ for lyme, Bart and Babesia for just over a year.
Then went on maintenance - taking abx 3 days one week followed by three weeks off.

Now I’m stretching the time off and will hopefully be able to get totally off the abx soon
Posted 6/24/2022 9:40 PM (GMT 0)

Girlie said...
The mino is messing with my head already. I just took the meds an hour ago.


What's the mino dose you're on Girlie?
Posted 6/24/2022 10:23 PM (GMT 0)
“What's the mino dose you're on Girlie?”

100 mg twice daily (M/W/F)
Posted 6/24/2022 10:44 PM (GMT 0)
I'm glad your better health is continuing, Girlie. Years ago I did mino and couldn't hang, just like so many others.
Posted 6/24/2022 11:41 PM (GMT 0)

running wild said...
I'm glad your better health is continuing, Girlie. Years ago I did mino and couldn't hang, just like so many others.


Yup - mino messes up my head - I guess there’s a downside of mino being great to get into the brain.

Last day of protocol - and then the mandatory 3 weeks off plus how ever many weeks I tack on.
Posted 6/25/2022 5:11 PM (GMT 0)
Running wild, minocycline was one of the first antibiotics that I tried. Interestingly, I could not handle it either. It felt as if my brain was going to explode. If you don’t mind me asking, what were the effects that you felt while taking it?
Posted 6/26/2022 5:16 PM (GMT 0)
How's it going Girlie?
Posted 6/26/2022 6:01 PM (GMT 0)
Lol - I’m pretty good now.
Back to normal quite quickly.

Hubby and I are on our way to the lake for a swim.

Thanks for asking
Posted 6/26/2022 9:00 PM (GMT 0)
Glad to hear Girlie!
Posted 6/29/2022 1:02 AM (GMT 0)
Girlie, Are you taking any other ABX with the mino?
Posted 6/29/2022 1:26 AM (GMT 0)

Kirky98 said...
Girlie, Are you taking any other ABX with the mino?

Yes I am - I take mino, Ceftin and Rifabutin M/W/F
and Tinidazole on Th/F
Posted 6/29/2022 10:52 AM (GMT 0)
How did he determine you were to go to maintenance?
Posted 6/29/2022 4:26 PM (GMT 0)

trkane said...
How did he determine you were to go to maintenance?

He has a set protocol - starting with stabilization (taking care of sleep and pain, etc) then Babesia, then Bartonella, while treating Borrelia alongside.
I was initially scheduled for Bartonella for 4 months and at that point (based on my symptoms ) he added two more months of treatment.
And then I went to maintenance.
If I relapse - Dr J will add more abx in.
Posted 6/29/2022 4:32 PM (GMT 0)
@Girle: What did your sleep support protocol look like?
Posted 6/29/2022 4:55 PM (GMT 0)
Hey wladek83,

I can't speak for Girlie, but I am also a patient of Dr. J. They gave me Klonopin for sleep. I was somewhat worried about taking it, but my practitioner said at the doses they give it, and if taken only as needed, that most people had no adverse reactions coming off of it. She said that even people who need it at a higher dose or daily for some period of time tend to do well if they are weaned off versus stopped abruptly. It is a magic pill for me when it comes to sleeping. But due to the possible withdrawal effects I only try to take it when I feel I absolutely can't sleep without it.

For pain they gave me Celebrex and Gabapentin. Honestly I haven't found these to make a difference especially when I'm badly herxing/flaring. The best methods I've found are fasting, detoxing, hot/cold therapy, focusing on diet, and sometimes, maybe I think things like Curcumin, NAC, glutathione, LDN work. It's hard to tell if it's coincidence. Sometimes those things make zero difference for me.
Posted 6/29/2022 5:30 PM (GMT 0)

wladek83 said...
@Girle: What did your sleep support protocol look like?

I didn’t have one - as I sleep quite well.
All my life I’ve never had trouble sleeping.
I did have several months of waking up in the night a few times each night - (gasping for air) that was early on - before I even knew I had Lyme.
That resolved - ( I think after a few months of treatment with my first Lyme doc.)
Posted 7/1/2022 2:05 PM (GMT 0)

Girlie said...
If I relapse - Dr J will add more abx in



Did he tell you that? I have been treating with him for a long time and cant seem to get to the finish line. Whenever I suggest anything he says "we treated for that". Even if it was years ago.

I will be interested in seeing if your memory improves and what you think did it. That is my huge remaining symptom.
Posted 7/1/2022 3:04 PM (GMT 0)

trkane said...

Girlie said...
If I relapse - Dr J will add more abx in



Did he tell you that? I have been treating with him for a long time and cant seem to get to the finish line. Whenever I suggest anything he says "we treated for that". Even if it was years ago.

I will be interested in seeing if your memory improves and what you think did it. That is my huge remaining symptom.

How bad is your memory?
How long ago did you finish the protocols?

/////////////////////////////////

No he didn’t tell me that - I assumed because he did that with another patient I know.
My memory is better than it was when I first finished the Persisters/Bart protocols.
And has improved a bit more since.
Posted 7/1/2022 5:25 PM (GMT 0)
trkane, did you improve at all with Dr J? How long ago did you do treatment with him
Posted 7/1/2022 6:55 PM (GMT 0)

trkane said...

Girlie said...
If I relapse - Dr J will add more abx in



Did he tell you that? I have been treating with him for a long time and cant seem to get to the finish line. Whenever I suggest anything he says "we treated for that". Even if it was years ago.

I will be interested in seeing if your memory improves and what you think did it. That is my huge remaining symptom.

How long have you been treating with him?

Your experience is my worry. I'm towards the beginning of treatment, but I have failed all therapies after years of treating. I relapse after I come off of therapies that worked moderately well.

I'm not going to play this whole treat forever game with the same clinic/doctor like I did with my previous LLMD. For me, this is a numbers game at this point. It's not disrespect to anybody, but if they aren't getting me well then it's on to the next one.
Posted 7/1/2022 7:38 PM (GMT 0)
“ I'm not going to play this whole treat forever game with the same clinic/doctor like I did with my previous LLMD. For me, this is a numbers game at this point. It's not disrespect to anybody, but if they aren't getting me well then it's on to the next one.“

Nothing wrong with that.
If you’re not seeing improvements after a while on the protocols.
Posted 7/1/2022 7:52 PM (GMT 0)
Oh yeah, for sure! That's the lesson I've learned after treating with my previous LLMD. However!, I am not speaking that possible negative outcome into experience. I went to Dr. J's clinic because of their reputation. So far, I've liked my appointments and the PA I'm treating through. I'm still really early on. I'm hopeful about treating with them. I hope it works out for both of us. They can claim a treatment success for their practice and I get get some of my life back. That'd be great.

I've simply learned that loyalty to doctors isn't the way to go.
Posted 7/1/2022 8:45 PM (GMT 0)

Lymie24 said...

I'm not going to play this whole treat forever game with the same clinic/doctor like I did with my previous LLMD. For me, this is a numbers game at this point. It's not disrespect to anybody, but if they aren't getting me well then it's on to the next one.

Thing is, all those doctors have the same tools at their disposal: Clarithro, Ceftin, Doxy, Mino, Rifa, Dapsone, Azithro, Mepron, Malarone, Clindamycin, Flagyl, Tinidazole. Mix and match. I guess only Horowitz uses PZA. That's basically it.
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