Disulfiram - Part 14

RainyCloud said...
Thank you potsnpans and Girlie.

Feeling ok on 375mg, just tired all the time.

It's hard at this point to differentiate between tiredness from lyme, herxing or disulfiram itself.

Giving it a few more days before I start 500mg

Oh Rainy I can relate to that too well lol. I was taking cholestyramine with it as well as doxy and azithro. I wasn’t sure if it was DSF, herx, it was a fun time.

Are you sure you need to be at 500? I weigh 185-190 and I asked my doctor many times are you sure I don’t need to be at 500 and they vehemently said no.

Pots said the same thing as well.

Not saying don’t do it, just saying if there’s no benefit then maybe just stay at the current dose. Not trying to discourage, just looking out for you. My doctors an incredible internist and has treated many people I know.

10 days off and I’m better but slow burn so don’t be disappointed if when you get off it’s not a quick fix. 3 months at max dose really takes time to work it’s way out of the body.

Hi all DSF fighters! I need some help!

Effervescent Disulfiram into enteric coated capsules?

Anyone try this? I disolve the disulfiram in small amount of water to a powder that dries, then I put it in enteric capsules. Does anyone know if it will lose its effectiveness?

Problem is, we have in our country only effervescent version of Disulfiram. It causes me diarrhea in normal use. Enteric capsules help. But does the drug still work after effervescence process?

MartinK: It's a shame you're stuck with the effervescent DSF... I haven't heard of anyone putting it into enteric caps as you've said.

Although it sounds pretty time consuming, I don't see how it would lose its effectiveness. You're basically just removing the effervescence, right?

potsnpans said...
MartinK: It's a shame you're stuck with the effervescent DSF... I haven't heard of anyone putting it into enteric caps as you've said.

Although it sounds pretty time consuming, I don't see how it would lose its effectiveness. You're basically just removing the effervescence, right?

Hey Pots, I appreciate your story about how it took time. I still have up and down days and can physically feel the DSF running through my system still lol.

Such a powerful drug.

potsnpans said...
Steelo: I'm not sure where I'm at right now. I started on some herbs hoping to help with mitochondrial function, but had to stop them a few days ago as some old symptoms started to resurface. All herbs I had taken before without issues. Anyway, I'll be sure to report back in couple of weeks, and please keep us posted on your progress as well...

Essentially I have been up and down since I came off. Some days better than others. Some days where I feel solid, some days where I feel like I used to.

I can genuinely feel the DSF coursing through my veins. I'm sure you can relate as well.

I am also on two compounded biofilm busters which have increased my herx, which IMO means the DSF is more active in my body and reaching deep into the infection.

It is a wild ride lol.

Did you test for mold by any chance?

I am also taking cholestyramine, clay, and charcoal for that so it's just hard to gauge herx, improvement, and DSF working its way out... sigh.

Sorry to hear about your bad week Rainy. Glad you're doing better now.

I still haven't started my disulfiram. Partly because I have been feeling pretty bad and part because of the stories I've read here. I'm worried about this one.

RainyCloud,

Maybe increasing DSF to 500mg was too much and too fast. I was at 375mg for about three months before going to 500mg for 30 days. Then I backed off to 250mg for 30 days and felt a lot better. I have since gone back up to 375mg for the past three week and did not even notice the increase dosage or trigger any additional herxing. I am considering next steps myself, and may want to wean DSF more slowly or just stop cold turkey soon and see how it goes.

It might be safer for me to drop back to 250mg for two weeks, then take 125mg for two weeks, then stop for a month or so, and decide from there if it all was worth it.

Having access to 250mg tablets is easier now to cut pills to control dosage better than the 250mg capsules I had to get made from Hopkington Drug.

Lymie24 said...

RainyCloud said...
Thank you potsnpans and Girlie.

Feeling ok on 375mg, just tired all the time.

It's hard at this point to differentiate between tiredness from lyme, herxing or disulfiram itself.

Giving it a few more days before I start 500mg

I was on DSF for about a year. I didn't realize how awful DSF was making me feel until I came off it for good. It was like a veil had been lifted on my mind. At first, I was herxing like crazy. It was destroying my Lyme. Towards the end, my theory is that DSF was constantly bombarding Bartonella biofilms but not killing them. I was consistently having Bart flares. I stayed on DSF for far too long.

Hi Lymie,

That’s amazing that you’re feeling better.

Question for you, I’ve been off DSF for 3 weeks and am having waves of feeling good and bad and symptoms all over the place.

Is this normal? How long after you got off did your symptoms improve. Did it take time or was it an overnight thing?

I’m also taking two biofilm buster nasal sprays as well as cholestyramine, charcoal and clay so I wonder if it’s just a herx along with the DSF working it’s way out.

potsnpans said...
Rainy: So sorry to hear you've had more trouble! As I'm sure you're aware, psychosis is a possible side effect of DSF at the higher dosages.. so maybe what you experienced this time wasn't from anything you did, or from any kind of interaction with other substances. Whatever it was it must've been really scary. Glad you were able to recover, if not yet completely...

How are you feelong pots?

How are you feeling today steelogreens? I think things will be ok for you, you've managed to stay on it for long enough to feel benefits in a few weeks. I'm really rooting for you!

RainyCloud said...
How are you feeling today steelogreens? I think things will be ok for you, you've managed to stay on it for long enough to feel benefits in a few weeks. I'm really rooting for you!

I'm okay.

Brain fog is good, sleep is hit and miss, less pain.

The biggest issue is this weird eye thing that goes on in my right eye that causes this greying/floaters but it's very annoying.

I drove last night and fog was good so that was nice.

I feel it's just working my way out and will take my time.

Rainy, maybe stick at the 375 for 3 months as I did?

You did get to that and were okay? I want you to be better friend.

Lymie24 said...

steelogreens said...

Lymie24 said...

RainyCloud said...
Thank you potsnpans and Girlie.

Feeling ok on 375mg, just tired all the time.

It's hard at this point to differentiate between tiredness from lyme, herxing or disulfiram itself.

Giving it a few more days before I start 500mg

I was on DSF for about a year. I didn't realize how awful DSF was making me feel until I came off it for good. It was like a veil had been lifted on my mind. At first, I was herxing like crazy. It was destroying my Lyme. Towards the end, my theory is that DSF was constantly bombarding Bartonella biofilms but not killing them. I was consistently having Bart flares. I stayed on DSF for far too long.

Hi Lymie,

That’s amazing that you’re feeling better.

Question for you, I’ve been off DSF for 3 weeks and am having waves of feeling good and bad and symptoms all over the place.

Is this normal? How long after you got off did your symptoms improve. Did it take time or was it an overnight thing?

Hi steelogreens,

I wish I could give you a definitive answer, but I didn't keep a journal around this time. From my memory, I'd say the symptoms I would associate with DSF use started to soften within a week or so. After a couple weeks I think I was more or less unaffected by DSF. \

Don't forget DSF has a super long half-life. 60-120 hours according to Wikipedia. It can take some time to get all of it out of you. How are you feeling now? What are your symptoms you associate with DSF side effects?

Well the pain has died down a lot in the joints, fatigue as well.

Overall I do feel better but I’m still having Lyme symptoms. I just want to know how long it took for the lyme symptoms to die down.

They’ve definitely improved but not in the state that people are saying I’m cured of close to it.