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Disulfiram - Part 14

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Posted 7/12/2020 6:01 PM (GMT 0)
3 days off (3.5 months total with 9 weeks at 375 mg and 2 weeks at 250mg, prior to that building up to it for a month).

Feel slightly better but just crazy weakness and fatigued.

I know most say to give it 2 weeks at least before I should anticipate improvements.

My doctor said maybe to stay on it for a couple more weeks to be safe but disulfiram’s website said 8 weeks at target dose is enough. What do you guys think?

Many are saying my dose and 9 weeks at 375mg is def enough but obviously I’m anxious lol.
Posted 7/12/2020 6:03 PM (GMT 0)

Cignet said...

steelogreens said...
How’s everyone doing?

32 days left at 375. Also taking cholestyramine, doxy and azithro.

I am exhausted. My body is simply beat up. No pain really. Just an exhaustion along with stomach pain and feeling just beat up.

I'm guessing you're taking the doxy and azithro for bartonella?

I'm reading that some people get better even just at 250mg. 500 does seem to be a bit much. Anyway. I'm going to see how I am on my first week at 125mg and then I'll see where to go from there. Definitely not going to overdo it this time. I just rode out a bart herx for the past few hours.


Hey Cig! Yeah it’s for unknown Bart. They honestly said they don’t think I have it but I didn’t really care and bit the bullet for two months of crazy herx.

375mg I did for 2 months which I think should be enough but given it’s not a linear progression while on it, can’t say I’m not semi nervous lol.

Don’t worry. Be patient. You will get there.
Posted 7/13/2020 5:43 AM (GMT 0)
Hey Cignet!

I sent you an email!

Hope everyone is doing good!

Doing ok myself with the DSF, but sleeping a lot unfortunately.

I'm going to take my dihydromyricetin more frequently. See if that helps.

Cignet I got those tingles with cryptolepis, I haven't figured out yet what causes them.

Guessing it has to do with babesia maybe.

Take care every one!
Posted 7/14/2020 10:25 AM (GMT 0)
Effects of disulfiram on the sleep of chronic alcoholics

https://pubmed.ncbi.nlm.nih.gov/6282542/

Sleep impairment by diethyldithiocarbamate in rat. Protective effects of pre-conditioning and antioxidants

https://docdro.id/7vdasrt
Posted 7/14/2020 10:26 AM (GMT 0)
"On the other hand, when the higher dose of DDTC was given in association with either one of two antioxidants, α-tocopherol or melatonin, the amounts of SWS and PS significantly improved even on day 1, suggesting that the DDTC effects on sleep involved an impairment of the brain oxidative balance. "


... So Vitamin E or Melatonin might help us.


I would have never guessed that antioxidants would help. Melatonin maybe...
Posted 7/14/2020 3:38 PM (GMT 0)
I'm doing pretty well on it. Been at 250mg daily for about 2.5 months. I take it with food at dinner after work and allocate a few hours afterward where I don't have to do anything productive because it makes me fatigued, sleepy, tired. Usually after a little nap I'm good again.

I been experimenting adding houttynia into the mix for suspected Bart. I been doing 10 drops a day and holy crap I get some herx going on.

I gotta say, I feel a lot better than I did a few months ago before starting DSF.

Im gonna keep riding it out.

Can't wait until I can eat bananas again. You also don't realize how much you miss ketchup until you are forbidden to eat it.

DSF also seems to make me ravinous with food. Also seems to bring out Bart symptoms which seemed to be quieted down when I started the houttyna + DSF.
Posted 7/15/2020 1:38 PM (GMT 0)
Thanks to all who are contributing to this thread. I started Disulfiram three days ago and having this helpful info definitely makes it easier.

Question for those who are currently on it and doing well, How often did you take it when you started? My LLMD said to take 62.5 mg once every 4-5 days to start and see how I tolerate it. He is very adamant about taking this medication slowly
Posted 7/15/2020 4:13 PM (GMT 0)

ltc1225 said...
Thanks to all who are contributing to this thread. I started Disulfiram three days ago and having this helpful info definitely makes it easier.

Question for those who are currently on it and doing well, How often did you take it when you started? My LLMD said to take 62.5 mg once every 4-5 days to start and see how I tolerate it. He is very adamant about taking this medication slowly


I’m on around day 110 from start.

I started at 125 every third day for a week, then 250 every third day for two weeks, then 250 daily for a couple weeks and since then 375 daily.

This is my second go. Def do low and slow otherwise you’ll have to restart and it ends up being a lot of time wasted in the end.

Are you taking enteric capsules?
Posted 7/15/2020 4:56 PM (GMT 0)
I just met with my LLMD and added Certin to my DSF. Good news to all that CVS has DSF back in stock so other retail pharmacies should be be in stock as well and no need to get it compounded.

I'll stay at 250 mg until my sx calm down a bit from the 500mg test and herx, then go back to 375mg until next LLMD appointment in OCT. I wasn't expected to be on DSF for this long.
Posted 7/15/2020 5:18 PM (GMT 0)

steelogreens said...

ltc1225 said...
Thanks to all who are contributing to this thread. I started Disulfiram three days ago and having this helpful info definitely makes it easier.

Question for those who are currently on it and doing well, How often did you take it when you started? My LLMD said to take 62.5 mg once every 4-5 days to start and see how I tolerate it. He is very adamant about taking this medication slowly


I’m on around day 110 from start.

I started at 125 every third day for a week, then 250 every third day for two weeks, then 250 daily for a couple weeks and since then 375 daily.

This is my second go. Def do low and slow otherwise you’ll have to restart and it ends up being a lot of time wasted in the end.

Are you taking enteric capsules?

I have already noticed some intense herxing, especially with my babesia symptoms. I am on the regular tablets not enteric capsules
Posted 7/15/2020 5:24 PM (GMT 0)
You can always check the latest disulfiram availability here:

https://www.accessdata.fda.gov/scripts/drugshortages/dsp_activeingredientdetails.cfm?ai=disulfiram%20tablets&st=c

Alvogen, Inc. (Revised 05/07/2020)
250 mg, 30 count (NDC 47781-607-30)
Available

Teva Pharmaceuticals (Reverified 07/06/2020)
250 mg, 100 count (NDC 0093-5035-01)
Availability and estimated duration of supply interruption is unknown

Teva Pharmaceuticals (Reverified 07/06/2020)
500 mg, 100 count (NDC 0093-5036-01)
Availability and estimated duration of supply interruption is unknown

Looks like only the 250 mg strength is available by Alvogen right now.
Posted 7/15/2020 10:03 PM (GMT 0)

ltc1225 said...

steelogreens said...

ltc1225 said...
Thanks to all who are contributing to this thread. I started Disulfiram three days ago and having this helpful info definitely makes it easier.

Question for those who are currently on it and doing well, How often did you take it when you started? My LLMD said to take 62.5 mg once every 4-5 days to start and see how I tolerate it. He is very adamant about taking this medication slowly


I’m on around day 110 from start.

I started at 125 every third day for a week, then 250 every third day for two weeks, then 250 daily for a couple weeks and since then 375 daily.

This is my second go. Def do low and slow otherwise you’ll have to restart and it ends up being a lot of time wasted in the end.

Are you taking enteric capsules?

I have already noticed some intense herxing, especially with my babesia symptoms. I am on the regular tablets not enteric capsules


On my first go I took non enteric and the herxing was insane, second go it’s bad but not even close to as bad. As you go to higher doses it may become unbearable.
Posted 7/15/2020 11:42 PM (GMT 0)

steelogreens said...

ltc1225 said...

steelogreens said...

ltc1225 said...
Thanks to all who are contributing to this thread. I started Disulfiram three days ago and having this helpful info definitely makes it easier.

Question for those who are currently on it and doing well, How often did you take it when you started? My LLMD said to take 62.5 mg once every 4-5 days to start and see how I tolerate it. He is very adamant about taking this medication slowly


I’m on around day 110 from start.

I started at 125 every third day for a week, then 250 every third day for two weeks, then 250 daily for a couple weeks and since then 375 daily.

This is my second go. Def do low and slow otherwise you’ll have to restart and it ends up being a lot of time wasted in the end.

Are you taking enteric capsules?

I have already noticed some intense herxing, especially with my babesia symptoms. I am on the regular tablets not enteric capsules


On my first go I took non enteric and the herxing was insane, second go it’s bad but not even close to as bad. As you go to higher doses it may become unbearable.

Since I'm starting at 62.5mg hopefully ill be able to handle the slow increases instead of starting 125 or higher I am trying to make sure I don't stop this med. I'll have to adjust accordingly
Posted 7/18/2020 3:18 PM (GMT 0)
I’ve been off of DSF for just over a month now and I’m ready to draw some conclusions. It seems to have cleared up (or at least greatly improved) many of my symptoms, but I’m still left with chronic fatigue and 'post exertional malaise' (PEM). Maybe this is just mitochondrial damage left over from infections and/or treatments..

Fatigue: same
PEM: same
Shortness of breath: greatly improved (maybe resolved?)
Heart palps: greatly improved
Chest fluttering feeling: resolved
Shooting chest pain: resolved
Shooting pain in left hip/leg: resolved
Night sweats: I hadn’t had them for years before DSF, but early in treatment they came back. They were drenching at first, now they’re mild (maybe normal?) but consistent
Tinnitus: same
Inability to concentrate/brain fog: greatly improved
Short-term memory: a little better
Weird buzzing feeling (usually in morning): resolved
Irritability: better overall... seems tied to PEM

I started DSF in October (2019) with the intent to build up to a 500 mg daily dose. I followed the Facebook group closely and became alarmed at the amount of patients reporting neuropathic side effects at the higher doses.. so I then decided to stay at 62.5 mg daily for a while as I was feeling great at that dose anyway. In mid-November I switched to an enteric version of DSF (homemade, double encapsulated). Then something convinced me that I needed to increase the dosage in order to achieve a lasting remission- I think it was the mouse model that Dr. Rajadas had completed and some of the discussion around it. I gradually climbed to 250 mg daily and stayed there for 3 months plus a week before tapering off. In total I was on the drug for about 8 months. I never expected it to be on it for that long!
Posted 7/19/2020 1:14 AM (GMT 0)

potsnpans said...
I’ve been off of DSF for just over a month now and I’m ready to draw some conclusions. It seems to have cleared up (or at least greatly improved) many of my symptoms, but I’m still left with chronic fatigue and 'post exertional malaise' (PEM). Maybe this is just mitochondrial damage left over from infections and/or treatments..

Fatigue: same
PEM: same
Shortness of breath: greatly improved (maybe resolved?)
Heart palps: greatly improved
Chest fluttering feeling: resolved
Shooting chest pain: resolved
Shooting pain in left hip/leg: resolved
Night sweats: I hadn’t had them for years before DSF, but early in treatment they came back. They were drenching at first, now they’re mild (maybe normal?) but consistent
Tinnitus: same
Inability to concentrate/brain fog: greatly improved
Short-term memory: a little better
Weird buzzing feeling (usually in morning): resolved
Irritability: better overall... seems tied to PEM

I started DSF in October (2019) with the intent to build up to a 500 mg daily dose. I followed the Facebook group closely and became alarmed at the amount of patients reporting neuropathic side effects at the higher doses.. so I then decided to stay at 62.5 mg daily for a while as I was feeling great at that dose anyway. In mid-November I switched to an enteric version of DSF (homemade, double encapsulated). Then something convinced me that I needed to increase the dosage in order to achieve a lasting remission- I think it was the mouse model that Dr. Rajadas had completed and some of the discussion around it. I gradually climbed to 250 mg daily and stayed there for 3 months plus a week before tapering off. In total I was on the drug for about 8 months. I never expected it to be on it for that long!


Hey Pots, I’m so glad to hear that.

May I ask what you weigh? Depending on weight maybe the 375 was needed to get the full job done but also, give it another month. I’ve been told 6-8 weeks is what a lot of people needed to get better.

I took 4 days off a couple weeks ago and then doc said do until the end of July and in just those 4 days of letting my body kick out some toxins I have way more energy and that’s with me back on it for 1.5 weeks. I went for a 6km run today when I could barely walk!

Really excited to see what August after I’m off for good holds for all my symptoms.
Posted 7/19/2020 1:43 AM (GMT 0)
Yeah, I guess some of those metabolites are still hanging around in my body.. maybe there's still time for things to improve further for me.

I just started a water only fast today which should kinda fast track the detox (and then some). I plan on going for 5 days, but this is my first extended fast ever, so I'll have to see how it goes...

I'm 175 lbs- wasn't going to go higher than 250 mg daily this time around although I did very much consider it. I decided I would try to go a little longer at max dose rather than higher.

Glad to hear you're energy levels have improved. Have you ever experienced PEM in the past? Do you think the 6km run will affect your energy levels tomorrow?
Posted 7/21/2020 12:43 AM (GMT 0)

potsnpans said...
Yeah, I guess some of those metabolites are still hanging around in my body.. maybe there's still time for things to improve further for me.

I just started a water only fast today which should kinda fast track the detox (and then some). I plan on going for 5 days, but this is my first extended fast ever, so I'll have to see how it goes...

I'm 175 lbs- wasn't going to go higher than 250 mg daily this time around although I did very much consider it. I decided I would try to go a little longer at max dose rather than higher.

Glad to hear you're energy levels have improved. Have you ever experienced PEM in the past? Do you think the 6km run will affect your energy levels tomorrow?

So had PEM in the past but looks like I’m okay. I have pain in my legs because the muscles are kind of in shock lol so I toned it down with a walk yesterday.

With regard to improvements, did you feel it while you were on or a week after you got off is when you started to see major improvements?
Posted 7/21/2020 8:11 AM (GMT 0)
potsnpans I'm so happy for you!

I agree with steelogreens, maybe if you give it another month the few remaining symptoms will go away!

So proud of you!
Posted 7/21/2020 12:25 PM (GMT 0)

steelogreens said...
With regard to improvements, did you feel it while you were on or a week after you got off is when you started to see major improvements?


A couple of days after I had completely stopped is when I started to feel really great. I began working out starting with running, then an intense yoga work out. ...Crashed pretty hard.
Felt a little better after a few days.. good enough to run again. In a few more days I did a plyometrics work out (cardio), but then crashed again, and I actually still haven't fully recovered energy-wise to where I was in those few days after stopping DSF.

Best case scenario for me is the yoga (and other workouts) brought out some toxins that my body is still trying to clear.

Another scenario would be that I'm left with residual mitochondrial damage. I've had PEM since the beginning of Lyme, but it's important to know that DSF (and antibiotics such as azithromycin) can damage mitochondria. If I were to ever take DSF again, I would be sure to include NAC and/or liposomal glutathione with my other supps in an attempt to protect mitochondria.

Anyway, this 5 day fast should help me in either of the above scenerios. I'll definitely report back about that...

RainyCloud: Thanks! What's your current status? Has the improved sleep from the melatonin yielded any other benefits?
Posted 7/21/2020 12:38 PM (GMT 0)
Hi potsnpans!

smile My current status is ok all things considered. I still have a long way to go I think. Today (or maybe yesterday) marked the second month of my current disulfiram treatment. It also marked the first day that I started 375mg. So far so good, I haven't noticed an increase in herx or symptoms. Which is great because I did feel that going from 125 to 250mg. The melatonin hasn't yielded any other benefits besides sleep, but the improved sleep itself is huge because I can notice the benefits of a good nights sleep all through the day. I was concerned that I had to stop disulfiram again due to the nightmares and disturbed sleep, it started becoming unbearable, so I'm really glad that it stopped smile
Posted 7/21/2020 12:47 PM (GMT 0)
Sounds good RainyCloud. Is 375 mg your max this time around?

Hang in there my friend!
Posted 7/21/2020 12:50 PM (GMT 0)
Thank you so much friend! I think I'm going to try 500 mg eventually, because I think the difference this time in slowly building up might allow me to sustain it. But if not, then I think I'm just going to continue 375 mg smile
Posted 7/21/2020 9:46 PM (GMT 0)
Just got off of tie phone with llmd's office. The plan is to start at 125mg every third day for a week, then 125mg every other day for a week, 125mg every day for the third week, and titrate up from there to max dose of 500mg daily. Sound right?

My pharmacy doesn't have 125mg so Dr's office is calling around trying to find a nearby compounding pharmacy for me. She said if she couldn't find one she would call my pharmacy back and see if cutting the 250's in half was an option.

Do I really need to change toothpaste, soap, shampoo etc? So do I just basically eat meat and veg no fruit or carbs? I was excited to start but now realizing I'm not really prepared.
Posted 7/21/2020 9:56 PM (GMT 0)
Hi WV Mike,

When I first started DSF I changed all those things like toothpaste, soap and shampoo...

But I'm starting to learn there was not much point in doing so.

Everyone is different of course but it seems like I'm able to handle the 'regular' versions of all those things.

I also cleaned my hands a few weeks ago with alcohol sanitizer and nothing bad happened.

In regards to carbs and fruit, I am not aware that those should be cut out?

I wouldn't be able to do this without carbs because I get really unwell on low carb diets.

I'm also eating lots of fruit lately.

And the vinegar thing doesn't seem to affect me either.

That said, everyone is different of course.
Posted 7/21/2020 10:10 PM (GMT 0)
I agree with RainyCloud. I initially watch not eating a lot of food with vinegar, now I only stay away from Apple Cider Vinigar and use alchohol free mouthwash. I even recently accidently took 3 dropper fulls of IHA tincture, added ketchup to a burger, and used Italian salad dressing with no issues. Occassional carbs and fruits are ok with me too.
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