Disulfiram - Part 14

tickbite666 said...
I'll be weaning off DSF after 8 months and see how I feel. Right now I'm at about 85% and remaining neuro sx may be in part from DSF side effects, and most likely permanent nerve damage. I'll stay on Ceftin for a few more months and if I start to back slide then add Clarithromycin.

I recommend to any DSF newbee's to plan only ramping to 375mg max dose and stay away from trying 500mg.

I'll stay in touch, May be starting a part time gig delivering auto parts soon after enjoying the summer off from starting age 65 retirement

later

Tickbite - I hope the 85% holds and maybe the last 15 % will continue to improve.

I believe the healing can take a long time.
My POTS has finally resolved - I thought I was stuck with it.
It has given me hope that the last few symptoms may subside as well.


Happy retirement!!

Ok so I guess I wasn't supposed to start the dsf yet?? Oops. My Dr sent me this list of steps for starting the dsf. He wanted to stop most of my abx before starting and add minocycline until at full dose. I've been taking dapsone and dsf together. I'll stop the dapsone now.
I'm up to 125mg every third day right now which is also not what he suggests now but is what we talked about before.
What is the adverse drug reaction he mentions? Here is the list.

================================
Would do the following every 3 days to note effect of each step. Maintain the nystatin throughout.

Step 1: Hold dapsone given its adverse drug-drug interaction with disulfarim

Step 2: Add in supports to help prevent neuropathy that is most probable (but still unlikely) side effect fromdisulfarim. Bentofamine 250mg three days per week (ex. MWF). Life Extension Mega Bentofiamine has this in it. Also add Alpha lipoic acid 300mg daily (Davinci brand has this in one cap).

Step 3: Reduce the dose of rifrapin to 150mg twice daily, this drug can be used while on disulfarim (with hopes of stopping completely in time).

Step 4: Add in Minocycline 100mg once daily which can also be maintained at first while on disulfarim initially

Step 5: Stop ceftin

Step 6: Stop zithromax

Step 7 Add in Disulfarim at 62.5 mg twice weekly (this is actually 1/2 of the 125mg initial doing I have mentioned previously). Would leave 2-3 day in between so something like M-Th schedule

***IF NEEDED: Can use dihydromyrecetin to help clear up "hangover" symptoms, 600mg daily

Step 8: Every two weeks double the total daily dose (62.5 to 125 to 250 to 500) but still maintain twice weekly. It is probably best to divide the daily dose to 2-4 times throughout the day (so 62.5mg twice daily to start etc.)

***ONCE YOU HAVE REACHED THE 500MG TWICE WEEKLY DOSING WE SHOULD SET UP AN APPOINTMENT TO DISCUSS PROGRESS.

Step 9: if tolerating the 500mg dose OK then every week can add one additional day of taking (so go form 2 caps to 3 caps for 2 weeks, then 3 caps to 4 caps etc. the next two weeks) until at 500mg daily. implement steps 10 and 11 while doing this.

Step 10: Stop the minocycline once at 500mg three times weekly

Step 11: one week after the minocycline cessation look to reduce rifampin to 1 cap daily

Step 12: Stop rifampin completely

Step 13: After tolerating max or best tolerated dose of disulfarim for 2 months should stop and assess if additional intervention is needed.
=================================

What do you all think of the plan? This will be the first time I have taken minocycline.

NYH99,

I didn't make the connection, but my cognition is been pretty good the past few months after almost 9 months on DSF. Probably clearer than anytime at 85 to 90% in the past. I have though developed a different type of foot neuropathy since June time frame that is still one of my remaining lingering sx. I had originally thought it was from Bart. I'm know hoping this is one of DSF known side effects and will resolve over time after I stop taking it. I did try Zinc as recommended in Disulfiam.net site, but it was too much on my GI track.

I started to wean off DSF a few weeks ago and I'm on my second week of at 125mg a day (reduced down from 375, then 250). Hopefully I will see additional improvements as DSF leaves my system as I have read from other DSF guinnie pigs. I agree DSF was pretty brutal at times, and I pushed too hard trying 500mg back in June to excelerate treatment (then reduce to 250mg to reduce herx for 30 days before going back to my 375mg tolerance.

I look forward to a nice Mia Tai around Oct 12 to celebrate . If I do backslide I'll first try Ceftin and Clarithocymin before going back on DSF again. But I'll keep my options open. I too have occasional balance issues, but I can live with that and can still climb a ladder to clean fall leaves from my roof cutters.

Glad to hear your success, and thanks for sharing your DSF timeline. Many folks don't have the patience for staying on a single protocol for as long as you have.

Congrats, Oregonhay!

You take just one 150 mg dose of flucanazole to clear Candida?

Good to know. I’ve taken it for a few days in a row after some signs I may have it (+ have had extensive abx treatment)

I also take a Tbsp of coconut oil once in a while. I actually like the taste.

RainyCloud,

It will work. But it will take a while for you to notice. It took me 90 days...
The best news is that its effect are permanent, so if you need to restart you will start off exactly where you left. And your immune system should pick up and kill anything it could not.

Today is my last DSF dose of 125mg. I started my part time auto parts delivery driver gig today and my foot neuropathy was pretty bad by mid day. I put on over 100 miles without leaving more than 6 or so miles from the store and my house. I hope the neuropathy is a side effect of the DSF since it's different than what I use to get before starting this experiment, and it goes away as the DSF leaves my system.

My congnition was pretty good at absorbing the new job computer log in and out tasks and learning the new job skills for an old fart with a neuro Lyme brain.

It has been several months since I last posted - and even now I am reluctant to rock things that seem to be so good.

So my son decided himself back in April that he had had enough pill popping. He had been on disulfiram since the previous November, alongside Rifampicin and minocycline (for his Bart) and a whole host of supplements. His stomach had decided enough was enough so I reluctantly agreed to supporting him come off everything.

The first month there were small signs that I worried were relapse, but over time things have become steadily better, to the point where Lyme doesn't feature in any of our conversations. In the last month he has returned to the gym (and overdid it at the start as he wasn't really aware just how out of shape he had become).

During lockdown he started an online gaming tournament which he has been running ever since - no sign of brain fog or fatigue and generally signs of being a normally annoying 19year old. He went on a road trip with wild camping for a week when restrictions eased here - driving the whole time while his girlfriend navigated. He couldn't have done that a year ago as his vision was too poor for him to feel confident driving.

It is now almost exactly 2 years since his bite and next month 2 years since his routine lyme test by his GP confirmed Lyme diagnosis. While he decided not to return to the university he was enrolled (and they kept his place for him to restart this month) as it is very far from home, with Covid-19 he just didn't want to move back into student accommodation.

He got a last minute place at our local University (which was his original 2nd choice). Not the exact same course, but one that he should be able to switch to the one he really wants to if he gets good grades. It is all currently online - and that is suiting him well as he is quite comfortable being home.

Today I decided to log in and see how you folks were all doing - it is true, that when things start to look better you stop thinking about it all. I do have prickly ears to any minor complaints he makes as I am hopeful he is in remission, but do know that it isn't impossible for things to recur at a later date - that is the nature of these nasty little beasts.

I just wanted to say to you all, hang in there. The first month or so off disulfiram I was convinced it was a mistake and tried to urge him to go back on. He hasn't had any more blood work done - lockdown initially made that impossible to organise, and now, well, I'm happy enough to go with symptoms since the blood work he got was based on T cell activity - so a high number there indicates that T cells are actively working against the target bacteria. As soon as there are any signs of anything then I will be back on the phone to his LLMD for a check up and some blood work, but so far so good. He's 5 months off everything now and life seems to be good for him.

Good luck folks!

@WV Mike I kept a daily log of how he was doing right through his disulfiram and I'd have liked to see him 100% before giving it all up, but he's a young adult and I had to support his decision. At the end of the day he knows his own body and 1.5 years of medication and he'd had enough of it all.

In the 2-3 months after stopping his general palor improved, his mood improved, his energy levels were back to almost normal and it seemed as if his immune system had switched itself back into gear. A couple of weeks ago he picked up his first headcold in over two years (the same week I had one) - and a few days of resting and he is right as rain again.

It's now 5 months since he came off all his meds - and it really feels like I have my boy back.

Cignet thank you so much for your kind message, it means a lot to me. I have sent you an email

Wow Rainy, that's so good to hear! And a nice coincidence is it looks like that was your thousandth post here.

Don't get discouraged if you do have a few bad days here and there. Poor sleep and over-exercise still seem to put me in a bit of a hole every once and a while, but overall I'm doing great (and I might still be improving).

NAC could be playing a part as well.. I started on it for the first time ever about 6 wks ago. The only supplements I'm on now are the NAC, Coq10, and fish oil.

Welcome Adam,

I agree that the sudden weakness in your legs after 6 week was probably not a neuropathy side effect from DSF. Its tough sometimes to discern what's a side effect from a herx during DSF treatment, since most "experts" don't fully understand how this drug actually works against our bacterial infections.

I'm one week off of my 8 months of DSF treatment. I added Ceftin in July, and just added some left over Tetracyline last week to try to address any bart sx that may pop up. Today I had some light "medicine head" feeling occur and had a spontaneous bruise appear on my left bicep, indicating to me there is still some bart left to address. And my stool is starting to change back to pre-DSF normalcy.

I think that you should be able to return to a full DSF dose more quickly than your first course, but still ramp up cautiously.

later