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Disulfiram - Part 14

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Posted 8/24/2020 5:22 PM (GMT 0)
steel,

The first couple weeks after I got DSF was awesome! I started to shed the side effects of DSF AND my Lyme symptoms were much less as well. One weekend I got really drunk with my wife, which is of course a terrible idea with chronic illness, but it had been so long since I had any fun or felt good. It was good for my soul.

Unfortunately, my symptoms I associate with TBIs started to come back full bore without any treatment of DSF or abx after a few weeks. It's tough to tell how well DSF worked for me. I think it knocked my Lyme back some, but I don't think it touched my bartonella.
Posted 8/24/2020 5:27 PM (GMT 0)

Lymie24 said...
steel,

The first couple weeks after I got DSF was awesome! I started to shed the side effects of DSF AND my Lyme symptoms were much less as well. One weekend I got really drunk with my wife, which is of course a terrible idea with chronic illness, but it had been so long since I had any fun or felt good. It was good for my soul.

Unfortunately, my symptoms I associate with TBIs started to come back full bore without any treatment of DSF or abx after a few weeks. It's tough to tell how well DSF worked for me. I think it knocked my Lyme back some, but I don't think it touched my bartonella.


Thank you.

Been about 3 weeks for me.

Doctor said timeline he has found has been all over the place for different people.

Plus I’m taking the cholestyramine And charcoal (due to high Mold) as well as the biofilm busters so still could be herxing / kicking out the toxins.

Sigh. This waiting game.

I was on azithro and doxy for two months as well while on DSF for still indeterminate Bart.
Posted 8/24/2020 5:35 PM (GMT 0)
Just anxious you know lol. Part of me is like Will it not cause any major improvement but I guess that’s just normal.
Posted 8/24/2020 5:44 PM (GMT 0)
Steel, you took azithromycin and doxy while on DSF? How was that? I'm planning on starting DSF soon but I am trying to cut back some abx first. I'm hoping to stay on most of them.
Posted 8/24/2020 6:24 PM (GMT 0)

WV Mike said...
Steel, you took azithromycin and doxy while on DSF? How was that? I'm planning on starting DSF soon but I am trying to cut back some abx first. I'm hoping to stay on most of them.


I was on cholestyramine, DSF, azithro, doxy, clay, charcoal, honestly, my stomach was in turmoil and I felt awful but I kept going.
Posted 8/24/2020 7:28 PM (GMT 0)
Pardon me, Are you all tuffing through this because you've heard a lot of success stories? Some of you were on here when I first came around so I'm wondering and watching and hoping for the best for you all.
Posted 8/26/2020 1:58 PM (GMT 0)

steelogreens said...
How are you feeling pots?


Last few days have been very good. Need more time before can say it's more than temporary.

I think it was about 6 weeks post DSF when I posted that I was feeling pretty good aside from bouts of PEM. I started on some herbs hoping to help mitochondrial function, mostly herbs I had taken before without issue and only one (Chinese Skullcap) that could be considered antimicrobial. Some old symptoms started to resurface so I stopped the herbs. 3 days later I started to feel better.. another day after that I started on NAC (just 500 mg 2x daily).. and now a week after that I'm feeling pretty good again.

Hoping for a week of stability before I test the PEM again.

How are you now?
Posted 8/26/2020 2:12 PM (GMT 0)
Also Steelo, you said you were still taking "biofilm busters". Was this recommended by your doctor?

Rainy: How are you feeling now?
Posted 8/26/2020 2:35 PM (GMT 0)
tickbite and steelogreens:

Thank you for your advice, it means a lot to me. I've decided to start back up with 250mg for now.
I think I still had some side effects at 375mg so I'm not sure when/if I should start back up on that dose.

potsnpans:

I'm feeling better than when I lost my short term memory but overall I'm feeling a bit depressed.
Currently, I'm sleeping a lot and don't have a lot of interest in doing anything.
I have no idea what causes me to feel this way, but maybe the disulfiram is involved?
Posted 8/26/2020 2:58 PM (GMT 0)

RainyCloud said...
I'm feeling better than when I lost my short term memory but overall I'm feeling a bit depressed.
Currently, I'm sleeping a lot and don't have a lot of interest in doing anything.
I have no idea what causes me to feel this way, but maybe the disulfiram is involved?


I think it is for sure. Being on a high dosage and then stopping for a few days probably led to an imbalance of neurotransmitters. I also wonder if you might be particularly sensitive to this sort of thing given that you've already experienced I guess a form of psychosis from the drug.

Of course I'm totally unqualified to make these judgements smile

Good luck continuing at 250 mg. It might be just as effective to do that for longer vs a higher dose for shorter.. I don't think there's much of a concensus either way.
Posted 8/26/2020 4:56 PM (GMT 0)
Thank you potsnpans, I needed to hear that! I appreciate you.
Posted 8/26/2020 7:59 PM (GMT 0)

Lightlife said...
Pardon me, Are you all tuffing through this because you've heard a lot of success stories? Some of you were on here when I first came around so I'm wondering and watching and hoping for the best for you all.

Lightife,

Most of us have been treating with ABX for a long time and DSF is a relatively new treatment protocol with not a lot of history with LLMD nor us experimenters. Many have claimed to have some good success, but jury is still out on this treatment plan.

RainyCloud, 250mg sounds like a good option for a few weeks to stabilize. I just had a bunch of spontaneous bruising that I haven't seen for over a month, so for me DSF is still hitting either lyme or bart after starting it eight months ago.

Post Edited (tickbite666) : 8/26/2020 2:07:52 PM (GMT-6)

Posted 8/26/2020 8:24 PM (GMT 0)

potsnpans said...
Also Steelo, you said you were still taking "biofilm busters". Was this recommended by your doctor?

Rainy: How are you feeling now?


Indeed it was pots. Been on it about a month.

Right now I feel like my body is itching and I'm sneezing and having an allergic reaction or something.

I haven't sneezed since I started lyme, so I wonder if this means my immune system is starting back up and I just have to be strong for a few weeks and start to really feel good.

What do you think my friend?
Posted 8/28/2020 1:27 PM (GMT 0)

steelogreens said...
Right now I feel like my body is itching and I'm sneezing and having an allergic reaction or something.

I haven't sneezed since I started lyme, so I wonder if this means my immune system is starting back up and I just have to be strong for a few weeks and start to really feel good.

What do you think my friend?


Sorry Steelo, I don't have much insight as to what this could mean. Has the itchiness and sneezing been pretty constant?

There are lots of theories on biofilm and Lyme. Seems odd to me though that you're doc would have you attempting to bust open biofilm without taking antimicrobials at the same time. Maybe this could be affecting your immune system?
Posted 8/28/2020 3:19 PM (GMT 0)
Steelogreen,

I have had bouts of itchy skin (usually on my forearms), and various combinations of sneezing, runny nose, and phlegm in the back of my throat at different times over my long road of treatment. I suggest if you aren't doing so now is to keep a written log of your daily common symptoms (rated in severity from 1 to 5 ) to see if any patterns develop.

later,
Posted 8/28/2020 5:03 PM (GMT 0)

potsnpans said...

steelogreens said...
Right now I feel like my body is itching and I'm sneezing and having an allergic reaction or something.

I haven't sneezed since I started lyme, so I wonder if this means my immune system is starting back up and I just have to be strong for a few weeks and start to really feel good.

What do you think my friend?


Sorry Steelo, I don't have much insight as to what this could mean. Has the itchiness and sneezing been pretty constant?

There are lots of theories on biofilm and Lyme. Seems odd to me though that you're doc would have you attempting to bust open biofilm without taking antimicrobials at the same time. Maybe this could be affecting your immune system?


My understanding is the DSF and biofilm busters are going at it at the same time right now and the BB are used to ensure nothing remains and is very common to do when you’re finished with treatment.

Just gotta play the waiting game.
Posted 8/28/2020 5:05 PM (GMT 0)

tickbite666 said...
Steelogreen,

I have had bouts of itchy skin (usually on my forearms), and various combinations of sneezing, runny nose, and phlegm in the back of my throat at different times over my long road of treatment. I suggest if you aren't doing so now is to keep a written log of your daily common symptoms (rated in severity from 1 to 5 ) to see if any patterns develop.

later,


Thanks TB.

I’m guessing the biofilm busters being attacked have opened up my immune system and causes my allergies to act up along with an allergic reaction. So while this sucks now it’s probably better in the long run.
Posted 8/29/2020 10:33 PM (GMT 0)
Some not so good news on DSF vs borrelia persisters...

https://www.mdpi.com/2079-6382/9/9/542/htm?fbclid=iwar2wjpru_skuajds66o1rphtep1prz4suaiwossv0paajcyjcfkz7ujbz_o
Posted 8/30/2020 12:50 AM (GMT 0)
Good post potsnpans, nice find on current DSF data. I've been consideration next steps give my duration on current DSF plan and past abx protocols.

I've actually just added Cefuroxome (Ceftin) last month on July 14, and was considering adding Tetra in Sept at my next LLMD consult. But maybe Ceftin and Clarithro may be a better choice based on the paper.

I was considering taking a break from DSF in October so a could have a cocktail (or a few more) at an upcoming wedding on Oct 25. Its kind of a special occasion for me and my other half of just over 20 years formally tying the knot at a Covid style JP affair.
Posted 8/30/2020 10:53 AM (GMT 0)
Thank you for sharing potsnpans.

Not sure what to think of it.

Aren't there many people on the facebook group that got better?

It's so discouraging to read the study.
Posted 8/31/2020 4:43 PM (GMT 0)

RainyCloud said...
Thank you for sharing potsnpans.

Not sure what to think of it.

Aren't there many people on the facebook group that got better?

It's so discouraging to read the study.


Haven't been on FB much since I ended my treatment, but yes there were many positive stories.. some claimed they were "cured", some were left with just a few symptoms after treatment..

Many had trouble completing treatment.. some completed, relapsed, and we're starting again.

Of those that completed, it seemed that very few received no benefit.

I just skimmed the study, but I don't think it's all bad news. Study does show some effectiveness vs stationary phase borrelia (survival rate 46.3%), and exposure to DSF was only for 7 days.

When DSF is used as a monotherapy for an extended period of time, I wonder if borrelia stays in stationary phase as it does with many abx treatments...
Posted 8/31/2020 8:22 PM (GMT 0)

potsnpans said...

RainyCloud said...
Thank you for sharing potsnpans.

Not sure what to think of it.

Aren't there many people on the facebook group that got better?

It's so discouraging to read the study.


Haven't been on FB much since I ended my treatment, but yes there were many positive stories.. some claimed they were "cured", some were left with just a few symptoms after treatment..

Many had trouble completing treatment.. some completed, relapsed, and we're starting again.

Of those that completed, it seemed that very few received no benefit.

I just skimmed the study, but I don't think it's all bad news. Study does show some effectiveness vs stationary phase borrelia (survival rate 46.3%), and exposure to DSF was only for 7 days.

When DSF is used as a monotherapy for an extended period of time, I wonder if borrelia stays in stationary phase as it does with many abx treatments...


Yeah I don’t think it’s bad tbh. It’s for such a short period of time so not that big a deal.

Update: 4 weeks and brain fogs good, but twitching/itching/spasms been bugging, fatigue and sleep is okay.

Getting frustrated waiting around but I’m trusting your 6-8 week timeline and just being patient.

Thankfully I have you all to keep me sane lol
Posted 9/7/2020 2:29 PM (GMT 0)
Well I finally took my first dose. 125 mg every three days to start. I read a post about someone having horrible pysch symptoms and started to think I wasn't going to take it at all. I'm really worried about that. Then I just took it. I knew if I didn't take it right then I never would so here we go..... Hopefully this is the answer I've been looking for, fingers crossed. I'm also taking dapsone, rifampin, ceftin, Nystatin and azithromycin. Stopped plaquenil and BVT for now.
Posted 9/7/2020 6:05 PM (GMT 0)
A lot of folks start at 62.5 mg every three days. If your really cautious. That is where I started. Tablets were kinda hard to split 4 ways but doable.
Posted 9/9/2020 12:42 PM (GMT 0)
Might have to go to 62.5, yesterday was a little rough. Is it possible to react badly to your very first dose? I was feeling decent so I did some brush hogging that needed done and dug some rocks out of the field with the backhoe. All day I felt weird but not terrible. The my chest was tight and heart was racing. Sweating profusely even after it had cooled down and I was t doing anything. Then some anxiety. My vision is really blurry. I pushed through and got my work done but I almost punked out. Only reason I didn't was because wife's uncle was there helping with some stuff and I don't like for others to know when I'm feeling bad. Not sure of this is going to be a good fit for me. Did anyone else react to very first dose? Sis it get better after you adjusted to med?
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