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Disulfiram - Part 11

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Posted Today 3:34 AM (GMT 0)
the way I am getting around neuropathy is starting off with a really low dosage for a really long time
Posted Today 11:31 AM (GMT 0)
Here's my schedule for the past fortnight:

Day 1 - November 19: 62.5mg
Day 2 - November 20: No dose
Day 3 - November 21: 62.5mg
Day 4 - November 22: 62.5mg
Day 5 - November 23: 62.5mg
Day 6 - November 24: 125mg
Day 7 - November 25: 125mg
Day 8 - November 26: 125mg
Day 9 - November 27: 125mg Taken at 4am
Day 9 - November 27: 187.5mg Taken at 10pm
Day 10 - November 28: 187.5mg
Day 11 - November 29: 187.5mg
Day 12 - November 30: 187.5mg
Day 13 - December 1: 187.5mg

RainyCloud

My sleep is pretty dreadful but I'm certain that I'm improving each day. My legs were giving out today like you mentioned The dizziness sounds like the half life catching up and your body adapting by the sounds of things.

Considering upping the dose to 250mg soon. Just need to account for being able to detox and stuff. Put through another order for DSF today and I'm gonna get everything else when I'm paid on Friday. Bicarb soda is working well so far.

Also it has been suggested, DSF enemas! On the facebook group. Back alley, lol what a euphemism!
Posted Today 3:02 PM (GMT 0)

🔹RainyCloud said...

Hi Quin!

Thank you so much for the reply.
Coming from BVT, one of the things we do is take high dosages of vit c.
Whenever I forgot the vit c, I would feel the same way I did a few days ago.
It's a very specific type of fatigue, but hard to describe.
Hence, my conclusion.
Could you tell a little bit more about B12, carnitine and that list? Thank you


It's kinda complicated, but here's the short summary.

When under stress, adrenaline and cortisol are produced by the adrenals. This has a bunch of side effects.

Production of adrenaline (ephinephrine) requires many cofactors, including vitamin C and B12. It also generates a waste product, homocysteine. Chronic adrenal stress can lead to the depletion of these cofactors, as well as accumulation of homocysteine.

People with chronic adrenal stress tend to show this pattern of depletion of cofactors and increased homocysteine. Lack of vitamin C results in impaired production of carnitine, so this deficiency may show up on blood tests too. Obviously the nutrients can be replaced, so depending on your diet and supplements, not all of them will necessarily be deficient.

Cortisol production is stimulated by ACTH released from the pituitary gland. ACTH is synthesized from the same precursor as beta-endorphin. Production of ACTH tends to lead to excess beta-endorphin and opioid tolerance. This is one of the primary findings in fibromyalgia. Naltrexone blocks the effects of endorphins, and is used to treat fibromyalgia, though personally I found it more effective to suppress ACTH and beta-endorphin by taking hydrocortisone.
Posted Today 4:02 PM (GMT 0)
Hi Girlie,

Have you recently had an appointment with Dr. J, and discussed DSF?
I have an appointment in 2 weeks with him and that something I'd like to pursue... but I feel like the clinic is not really into Disulfiram protocols right now.
Posted Today 4:46 PM (GMT 0)
RainyCloud, yes the best supplement for Cortisol production is Phosphyditylserine. My NP did a cortisol test and it turns out mine is super high at night before bedtime, which is the reason I lay up in bed thinking all night and can never fall asleep. The Phosphyditylserine is supposed to attenuate the spikes in cortisol, and since taking it I sleep great! Citicoline is another similar option, a precursor to Phosphyditylserine, not sure which is aborbed better, but Richard Horowitz recommends Phosphyditylserine as well.
Posted Today 5:14 PM (GMT 0)
🔹RainyCloud,

Most likely. I'm gonna order a load of turmeric as well. Just took a teaspoon in the tiniest amount of water and felt some relief, also good for the liver too! Along with the ginger and the taurine I think I'll be set until I get tests done in the new year.

Praying as always. Hope you're out of the funk soon.
Posted Today 6:05 PM (GMT 0)

Alxander said...
Hi Girlie,

Have you recently had an appointment with Dr. J, and discussed DSF?
I have an appointment in 2 weeks with him and that something I'd like to pursue... but I feel like the clinic is not really into Disulfiram protocols right now.

I asked him about Disulfuram - what his thoughts were a few months ago and he said it’s too soon to know - but he didn’t think it wouid be a “cure”.
I’m taking that to mean it’s like other protocols - some do well, some don’t.
At that time he had some patients taking dsf on their own... I guess he’s supporting them but not endorsing it.
I didn’t ask him if he was writing scripts for it.

He may have a different perspective on it now.

I think he’s not endorsing it because he doesn’t know the efficacy of it at this point.

Please let me know what his stance is on it after your appt.
You can always email me if you don’t want to post.

I don’t see him until March.
Posted Today 6:56 PM (GMT 0)
I just had the most painful "hangover".

I was taking 250mg but took Thursday, Friday, Saturday off. Started back up yesterday at just 250mg. Very painful hangover for the past 12 hours. Somehow after drinking coffee it's kind of gone away but still some ringing in the ear.

I sure hope it was killing the lyme and not something else. I don't see how it could be anything else. Maybe because I took a break for 3 days the bactera "came out" and then I zapped it. I'm going with that theory.

I ordered some Dihydromyricetin and Taurine. It should be here today. Too bad it wasn't here yesterday!

So this stuff is suppose to help deal with the hangover part in Disulfiram? I'll try anything not to have another day like this.

I will say, whenever I have these intense hangovers like herx reactions I start to feel wonderful following it. Like I broke into another "level" of cured-ness. Hopefully it stands true! I already feel kind of better drinking my coffee -- but wow, 3x alka seltzer, turmeric, and even pain killers, did NOTHING. I guess it came down to moving around and drinking lots of water and then coffee.

If all goes as planned (and no more super-hangovers) I'll be going from 250mg to 500mg next weekend!
Posted Today 7:27 PM (GMT 0)
oregonhay,

Good to hear you're improving. I'm definitely gonna wait for Friday before I try 250mg if that's your experience. 187.5mg is definitely making a difference for me right now and I stink like something nasty. I feel my IBS is definitely getting better as I increase the doses.

Also the Taurine clears out the aceteldehyde a whole load - even with the DSF affects so that's a good thing. Definitely gonna take around 2.4g a day of the stuff.

Maybe it's something to do with the DSF leaving the system? Sounds like it, considering people say they feel better when they take a break. Although you mentioned you took some more after a break.

This drug is interesting and all this experimental stuff is funny, interesting and terrifying at the same time lol.
Posted Today 9:08 PM (GMT 0)
Hey all, good news.

After a week off from the 3 weeks at 500MG I am feeling amazing. Not cured yet but the pressure, dizziness, brain fog, muscle pain is all so much better.

I’m back on 125 enteric capsules split into two today. Going to continue this for a week and then jump 62.5 mg, then try that for a week and reevaluate.

I can’t believe it. I’m so excited. It’s just a matter of right dosing and how much time. I cleaned the snow today and if all goes well I plan to go back to work in the next few weeks.

Any questions feel free to ask. I’m going to get zinc as well as recommended by many of you.

I’m also on L-Ornathine but otherwise that is it.
Posted Today 9:13 PM (GMT 0)
I’m relatively new to disulfiram, so not sure about the regime. How ping do you stay on it? Is it meant to be a short term treatment or are you expected to stay on it forever? Also anyone have any idea if it helps with autoimmune Lyme issues?
Posted Today 9:16 PM (GMT 0)
steelogreens

Always good to hear from you. Especially on the up. That sounds excellent.

How frequently have you been taking breaks? Can you summarise your schedule up until this point?

I'm considering taking a break at the end of the year for a week just to see my baseline. Then get back on it.

Enteric capsules increase the bioavailability too so that's cool. Are you aiming for 625mg you say?

All the best man. God bless.
Posted Today 9:25 PM (GMT 0)

dcd2103 said...
I’m relatively new to disulfiram, so not sure about the regime. How ping do you stay on it? Is it meant to be a short term treatment or are you expected to stay on it forever? Also anyone have any idea if it helps with autoimmune Lyme issues?

I'll go through facebook and compile a list of autoimmune sufferers. I've found one now but I'll make an upload for it.

It depends on individual tolerance but the aim is to have 3 to 4 months at max dose. It can take up to 2 months to reach the target dose based on one's tolerance.

I'll dig up some autoimmune issues from the facebook group for you. Some people talk about having SFN as well so it sounds hopeful. They stay at the lower doses and see good effects too.
Posted Today 9:52 PM (GMT 0)
dcd2103

Here's some of the FB discussions on autoimmunity. Most people are alright on it with issues like Sjogrens, MS, SFN and such. If you can speak to a doctor about it.

https://www.dropbox.com/sh/2wuse37hpy6fj8p/aaatiutorhal_c9aqebzkpgta?dl=0
Posted 12/3/2019 1:02 AM (GMT 0)
Good news.

I got the Dihydromyricetin and Taurine and took the minimum dosage this afternoon. So far no adverse reaction. I'll increase the dosage tomorrow. Feels like a good combination to combat my hangovers.
Posted 12/3/2019 1:07 AM (GMT 0)
dcd2103

4 months protocol

First do a small dosage 62.5, wait three days, and check for adverse reactions. Cease any and all medications and or cross check for interactions, even with herbs. Absolutely no green tea, black tree oil, and some other things (L-Thiamine).

After 62.5mg, if ok, start every other day.
If ok, 62.5mg for 3 weeks
if herx, continue at 62.5mg until they cease or become very infrequent.

After that, increase to 125mg for three weeks or until herx become none to infrequent.

Then 250mg for 3 weeks again, until no herx.

And finally 500mg for 8 weeks.

I am in between 250mg and 500mg. I had to stop my first attempt after 5 weeks and restart two weeks later.
I am on various supplements to deal with the side effects. The biggest impact supplements is 1) Tumeric 2) Magnesium 3) Zinc

There's a lot of talk about other supplements like I just mentioned I got Dihydromyricetin and Taurine and giving it a try.

Do not be tempted to jack up your dosage to 250mg or 500mg anytime soon. That's probably the most important fact with this drug.
Posted 12/3/2019 1:25 AM (GMT 0)
Awesome, thanks guys!

Cignet, very helpful the pdf on small fiber neuropathy and disulfiram. I’m going to reach out to the woman who wrote the post and see how she’s doing now and if she’s still recommend it.

Oregon, what kind of side effects are you experiencing? I am concerned that it will trigger my neuropathy, almost everything does, and it’s awful worse than all of my other symptoms conbined. Although if it triggers it at first but ultimately cures it, I’m in!
Posted 12/3/2019 2:25 AM (GMT 0)
I had some neuropathy at first. I always had tingles in my feet. I had weird pains in my mouth. I had strange pains in my kidney, liver.

But most of that was very small or insignificant. I also had this re-occuring symptom that I don't think nobody has described, basically I felt like I was fading in and out from reality and all sensory input stopped. I felt like I was falling and it always happened right before going to bed and if I was leaning on my left side. Everything went pitch black. I think this is neuropathy. Anyway it has gone away. I think most of it was side effects from experimenting from herbs and other drugs. that's why I stay away from everything now.

The only other side effect is basically my herx, which is hangovers in the morning. This is consistent with die off and my treatment. I get them about twice a week but today I had a large one. Like REALLY bad hangovers. I try to back off on my treatment when i get them. But if I only get one or two a week that's a good sign. Ringing in my ears and headache with that. They seem to go away after mid morning.

I'd say you'd want to get to just-about getting a hangover, and keep it there for a few weeks. And take lots of magnesium, zinc, and turmeric.
Posted 12/3/2019 2:52 AM (GMT 0)

🔹RainyCloud said...
Quin I can't thank you enough for that well written summary.

You mentioned b12, I think I'm going to buy some today.

Are there other vitamins that are used for cortisol production besides vitamin c + b12?

I know you said it depends on your current diet, but I just want to be safe.

Thank you again.

In addition to vitamin C and B12, epinephrine production also requires vitamin B6, tyrosine, methionine, and folate. However, I had a bartonella infection which was producing huge amounts of B6 (bartonella has enzymes that can do that) so when I tested my B6 it repeatedly came up high.

Cortisol is produced from cholesterol, with pregnenolone or progesterone as an intermediate product. The hydroxylase enzymes that produce cortisol from progesterone require NADPH as a cofactor. This usually isn't deficient, although some people have genetic mutations that reduce the activity of these enzymes (a few percent of the population).

The bigger problem with deficient cortisol synthesis is that it leads to pituitary production of ACTH from POMC, with 'spill-over' of the POMC into beta-endorphin production, which has been associated with fibromyalgia symptoms. This is the theory behind using low dose naltrexone to treat fibromyalgia.
Posted 12/3/2019 10:12 AM (GMT 0)
So here's me on day 14. Feeling considerably better.

Had my first major herx, a bit more of a headache than usual this morning.

(Still here wow. Didn't expect this. Turmeric barely fazed it.)

My digestive issues are improving, been having pain in my guts since increasing the dose but I relate this to IBS/ANS issues because this happens on other supplements. Less abdominal pressure because of the IBS. I regard these as improvements.

A little bit of neuropathy? In my left toe, or it's something else. Will see how things go. Still using zinc. May split doses morning and nightly.

(My hairy hobbit toes needed a trim, it's all good lol.)

Waiting for Friday before I approach 250mg.

I think I'm killing bacteria off.

Day 1 - November 19: 62.5mg
Day 2 - November 20: No dose
Day 3 - November 21: 62.5mg
Day 4 - November 22: 62.5mg
Day 5 - November 23: 62.5mg
Day 6 - November 24: 125mg
Day 7 - November 25: 125mg
Day 8 - November 26: 125mg
Day 9 - November 27: 125mg Taken at 4am
Day 9 - November 27: 187.5mg Taken at 10pm
Day 10 - November 28: 187.5mg
Day 11 - November 29: 187.5mg
Day 12 - November 30: 187.5mg
Day 13 - December 1: 187.5mg
Day 14 - December 2: 187.5mg

Editing in brackets...
Posted 12/3/2019 3:16 PM (GMT 0)

UnsightlyCignet☄️ said...
So here's me on day 14. Feeling considerably better.

Had my first major herx, a bit more of a headache than usual this morning.

I stopped disulfiram after about a week, because I was herxing. I haven't taken any since then, and I am still herxing 2 weeks later. It has a very delayed effect. No neuropathy though, just muscle aches.
Posted 12/3/2019 3:17 PM (GMT 0)

Girlie said...

Alxander said...
Hi Girlie,

Have you recently had an appointment with Dr. J, and discussed DSF?
I have an appointment in 2 weeks with him and that something I'd like to pursue... but I feel like the clinic is not really into Disulfiram protocols right now.

I asked him about Disulfuram - what his thoughts were a few months ago and he said it’s too soon to know - but he didn’t think it wouid be a “cure”.
I’m taking that to mean it’s like other protocols - some do well, some don’t.
At that time he had some patients taking dsf on their own... I guess he’s supporting them but not endorsing it.
I didn’t ask him if he was writing scripts for it.

He may have a different perspective on it now.

I think he’s not endorsing it because he doesn’t know the efficacy of it at this point.

Please let me know what his stance is on it after your appt.
You can always email me if you don’t want to post.

I don’t see him until March.

You can count on me to report back as soon as I come back. smile
Posted 12/3/2019 3:24 PM (GMT 0)

Quin said...

UnsightlyCignet☄️ said...
So here's me on day 14. Feeling considerably better.

Had my first major herx, a bit more of a headache than usual this morning.

I stopped disulfiram after about a week, because I was herxing. I haven't taken any since then, and I am still herxing 2 weeks later. It has a very delayed effect. No neuropathy though, just muscle aches.

Is this length delay normal for disulfiram? I've been on it a couple weeks and haven't noticed anything yet
Posted 12/3/2019 3:45 PM (GMT 0)

Aerose91 said...

Is this length delay normal for disulfiram? I've been on it a couple weeks and haven't noticed anything yet

It varies, some people don't get much. I got fatigue as soon as I took it. It varies for a lot of people. It seems to be related to the amount one is taking, some people start herxing after increasing after a while.

The herxes will probably come through soon, so make sure you can detox.
Posted 12/3/2019 6:07 PM (GMT 0)

UnsightlyCignet☄️ said...

Aerose91 said...

Is this length delay normal for disulfiram? I've been on it a couple weeks and haven't noticed anything yet

It varies, some people don't get much. I got fatigue as soon as I took it. It varies for a lot of people. It seems to be related to the amount one is taking, some people start herxing after increasing after a while.

The herxes will probably come through soon, so make sure you can detox.

Thanks. I do regularly detox- too much at times because I get too dehydrated and that's problematic. I may be upping it to 500 mg next week so I'll see what happens then.
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