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Posted 4/20/2021 4:25 PM (GMT 0)
It’s been several months - and started a cycle this morning.

Tues/Thurs/Sat: Mino, Rifabutin, Ceftin plus Tinidazole Fri and Sat.

Took them a couple hours ago and I can already feel it in my head.
That’s likely the mino.
Posted 4/20/2021 4:54 PM (GMT 0)
Good to know Girlie, Its a good sign that the bacteria or biofilms inside your body are more sensible to antibiotics and are dying off.

The months of abx holiday could render Bart, Borrelia more sensible, its not less diferent with a couple of weeks pause.

Was this new return to abx a Dr. J recomendation? What does he say about months of waiting and then resume again? I'm curious
Posted 4/20/2021 9:29 PM (GMT 0)
Well - Dr J’s maintenance is taking the abx monthly.
So one week on and 3 weeks off.

But I skipped several cycles - to see what my baseline truly is.

I didn’t call and ask him.
Posted 4/20/2021 9:38 PM (GMT 0)
Girlie, did you feel like you relapsed any at all while you were off?
Posted 4/20/2021 11:02 PM (GMT 0)

ChristianWithLyme said...
Girlie, did you feel like you relapsed any at all while you were off?

I haven’t felt as well the past week or so - felt tired and sore - In fact I called in sick for work yesterday.

So I figured I should do my protocol and see if I feel any different.
Posted 4/21/2021 12:23 PM (GMT 0)
Sorry to hear as well Girlie. Chronic 3B's are tough to totally eliminate for good. I've finally accepted to getting only to 85% well, and still trying to figure out the least toxic maintenance protocol. As you know I also just returned to treatment after being ABX free for almost five months now.

Just got out of the hospital yesterday for an overnight visit for an unknown "cardiac episode" from passing out while eating breakfast at a local diner Sunday am. This is my second occurrence of "Syncope" in the past year after my heart attack in August 2019. Both times I was on Disulfiram and right now I'm researching that Dispufiram may be contrained with cardiac disease, and syncope is buried in the real fine print warnings just after pregnancy.
Posted 4/21/2021 4:45 PM (GMT 0)

tickbite666 said...
Sorry to hear as well Girlie. Chronic 3B's are tough to totally eliminate for good. I've finally accepted to getting only to 85% well, and still trying to figure out the least toxic maintenance protocol. As you know I also just returned to treatment after being ABX free for almost five months now.

Just got out of the hospital yesterday for an overnight visit for an unknown "cardiac episode" from passing out while eating breakfast at a local diner Sunday am. This is my second occurrence of "Syncope" in the past year after my heart attack in August 2019. Both times I was on Disulfiram and right now I'm researching that Dispufiram may be contrained with cardiac disease, and syncope is buried in the real fine print warnings just after pregnancy.

I never took disulfiram precisely because of the heart contraindications of disulfiram, even for people who dont have heart issues, it messes with the heart. But i believe heart can recover if disulfiram is withdrawn. Be careful, i would try alternatives. Better safe than sorry its not worth it .
Posted 4/21/2021 4:52 PM (GMT 0)

Girlie said...
Well - Dr J’s maintenance is taking the abx monthly.
So one week on and 3 weeks off.

But I skipped several cycles - to see what my baseline truly is.

I didn’t call and ask him.

So you are taking the monthly schedule. Are you trying other thinks along with abx, like NAC or perhaps cistus? Traveller and other members here had good after they added cistus to abx or cistus alone.
Posted 4/21/2021 6:34 PM (GMT 0)

tickbite666 said...
Sorry to hear as well Girlie. Chronic 3B's are tough to totally eliminate for good. I've finally accepted to getting only to 85% well, and still trying to figure out the least toxic maintenance protocol. As you know I also just returned to treatment after being ABX free for almost five months now.

Just got out of the hospital yesterday for an overnight visit for an unknown "cardiac episode" from passing out while eating breakfast at a local diner Sunday am. This is my second occurrence of "Syncope" in the past year after my heart attack in August 2019. Both times I was on Disulfiram and right now I'm researching that Dispufiram may be contrained with cardiac disease, and syncope is buried in the real fine print warnings just after pregnancy.

Yikes! Now that you have stopped the Disulfuram - will the heart episodes stop?
Posted 4/21/2021 6:38 PM (GMT 0)
"So you are taking the monthly schedule. Are you trying other thinks along with abx, like NAC or perhaps cistus? Traveller and other members here had good after they added cistus to abx or cistus alone."

Yes, I am doing the maintenance - it's one week on (T/Th/F/S taking meds) pulsing.
Rifabutin, mino, ceftin and Tinidazole.

I haven't decided if I will wait a few months after this cycle to do another one...or just repeat this on a monthly basis. I should have a phone appt. with Dr. J and get his advice.

I haven't taken cistus tea. Something to think about.
Posted 4/21/2021 6:41 PM (GMT 0)
So, shortly after taking my evening abx, I started to feel horrible. I had a horrific stomach ache (the abx usually don't bother my GI) and felt weak.
I ended up laying down (and crying..lol) - just so surprised that I would feel so bad.
I don't usually react on the first day of the abx. Seems too soon to be a herx?

I feel okay today though, so it was short-lived - whatever it was


I will take them again tomorrow...and see what happens.
Posted 4/21/2021 9:51 PM (GMT 0)
Girlie, I don't consider two random black-outs 9 months apart that serious after now connecting dots back to DSF usage. First episode last June 24 was after being on DSF for five months and raising dose up to 500 mg max for 30 days. Sunday's fainting seemed out of the blue, until seeing that DSF was the only common thread. My cardiologist want to do an sonogram of my corata's first, and then a tilt table test to rule out other blood flow causes.

I'm 66 y/o and been treating Lyme heavily for past ten years. I have a con-call next week with my LLMD and she just told me to not to restart DSF after she just reviewed by lengthy Hospital labs she got today. I may be open to a light abx maintenance protocol, and herbal route is out while on too many heart meds thinning out my blood.

Only good news now is I can have a drink in another ten days.

Restarting your ABX after being off for awhile is always a downer. Hope you get through OK.
Posted 4/22/2021 1:24 AM (GMT 0)
Feeling quite well today .
Got out and met a friend for “coffee”

Hardly noticed my symptoms.

Will see what happens tomorrow when I take the meds again,
Posted 4/22/2021 5:50 PM (GMT 0)
Meds in me - so far - so good.
Feeling a bit “heady” but nothing else so far.

I have errands to run today including grocery shopping - we will see how that goes. Glad I don’t have to work today
Posted 4/22/2021 5:54 PM (GMT 0)

tickbite666 said...
Girlie, I don't consider two random black-outs 9 months apart that serious after now connecting dots back to DSF usage. First episode last June 24 was after being on DSF for five months and raising dose up to 500 mg max for 30 days. Sunday's fainting seemed out of the blue, until seeing that DSF was the only common thread. My cardiologist want to do an sonogram of my corata's first, and then a tilt table test to rule out other blood flow causes.

I'm 66 y/o and been treating Lyme heavily for past ten years. I have a con-call next week with my LLMD and she just told me to not to restart DSF after she just reviewed by lengthy Hospital labs she got today. I may be open to a light abx maintenance protocol, and herbal route is out while on too many heart meds thinning out my blood.

Only good news now is I can have a drink in another ten days.

Restarting your ABX after being off for awhile is always a downer. Hope you get through OK.

Could you keep your symptoms in check if you took abx for a few days a month - not waiting for a relapse but scheduling every 4 weeks or so?
Posted 4/22/2021 6:30 PM (GMT 0)
Girlie, That's probably my next plan. But I had tried the pulsing routines a few years back with no luck. Right now my goal is to priorities my treatment plans of getting cardio, urology, and lyme in the correct order. Got a busy week ahead to figure that out on my own.

Hope you continue to feel OK today. good luck
Posted 4/23/2021 11:11 AM (GMT 0)
When people get better pulsing abx, do they eventually cease to react to the abx?
Posted 4/23/2021 3:12 PM (GMT 0)

potsnpans said...
When people get better pulsing abx, do they eventually cease to react to the abx?

Two things happen - your symptoms don’t return plus you don’t react when you do your cycle on.

I woke up with the shivers down my spine - which was a symptom I had finally lost many months ago! sad
My head pressure is back -

Will see how the day goes - day off of abx
Posted 4/23/2021 7:55 PM (GMT 0)
Ok that was kinda my original understanding.

But I know you've been at this for so long.. I was beginning to wonder about the "reacting" part, and if patients ever quit even though they're still reacting.

Hope those returning symptoms go away and don't pop up again!
Posted 4/23/2021 8:01 PM (GMT 0)
tickbite: sorry to hear about the DSF trouble.. that was your second round with it, right?

.. wondering if you'll have a longer lasting benefit this time. Was the second round more or less the same as the first?
Posted 4/23/2021 8:44 PM (GMT 0)
Haven’t taken any meds today.

Supposed to take tini and diflucan but decided to not take anything - my back is killing me and head pressure is bad.
My pee is still orange from yesterday’s Rifabutin.
Posted 4/23/2021 9:05 PM (GMT 0)
“ But I know you've been at this for so long.. I was beginning to wonder about the "reacting" part, and if patients ever quit even though they're still reacting.“

The last time I did a cycle was November - I think (my notes are shoddy)

I did get a fever.

Dr J (in a video) said that his remission stats would be higher if patients didn’t stop too early.
He acknowledged it wasn’t easy - people want to put it behind them and move on from everything lyme (basically).

So I have just been testing the waters - wondering how long I can be off the meds.
I wasn’t feeling horrible when I decided to do this “round “ but my few leftover symptoms weren’t going away either.


After this cycle I won’t wait several months before doing the next one.
Maybe just stretch it by a couple weeks and see how I feel.
Posted 4/23/2021 9:50 PM (GMT 0)

potsnpans said...
tickbite: sorry to hear about the DSF trouble.. that was your second round with it, right?

.. wondering if you'll have a longer lasting benefit this time. Was the second round more or less the same as the first?

PnP,

Yes, this is my second round on DSF. First time was Jan to Sept last year with five month off all ABX with only minor nagging neuro sx. I had stopped abx twice before but only lasted about 3 months before sx returned each time, then restarted abx again.

Even with the second fainting episode I am still willing to give DSF another try, but just limit dosage to no more than 250mg a day. This round I was at 375 for about two weeks, and first round i pushed myself to 500 mg in June which I thing triggered the fainting then dropped to 250mg for a month before ramping back to 375mg before stopping in Sept. I was feeling the same extreme fatigue this time around as the first, but tough to tell given my other gastro problems in parallel.
I'll see what my LLMD says next Friday. All treatment has its risks.
Posted 4/24/2021 1:01 AM (GMT 0)

Girlie said...
“After this cycle I won’t wait several months before doing the next one.
Maybe just stretch it by a couple weeks and see how I feel.

Possibly, due to the long duration of the pause, the bacteria or biofilm gained greater susceptibility to the abx and now you are reacting to worst die off than before. I will only stop my abx when all my symptoms are gone. Why? Because i am sure by the stretch marks and feeling slowly a little better on symptoms are due to treatment.

I see that you added a new abx you didnt usually used, rifabutin.. Did you ever tried it before? If so, did you had the same worst symptoms as now? If not, would it be that it is hitting bart hard now? Or perhaps a bad reaction to rifabutin?
Posted 4/24/2021 2:05 AM (GMT 0)
“ I see that you added a new abx you didnt usually used, rifabutin.. Did you ever tried it before? If so, did you had the same worst symptoms as now? If not, would it be that it is hitting bart hard now? Or perhaps a bad reaction to rifabutin?“

I have been on Rifabutin since August, 2018
I transitioned to maintenance protocol (with Rifabutin) in March of 2019 I believe.
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