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Disulfiram - Part 7

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Posted 11/8/2019 8:26 PM (GMT 0)
Part 1:
https://www.healingwell.com/community/default.aspx?f=30&m=4143796

Part 2:
https://www.healingwell.com/community/default.aspx?f=30&m=4148545

Part 3:
https://www.healingwell.com/community/default.aspx?f=30&m=4154973

Part 4:
https://www.healingwell.com/community/default.aspx?f=30&m=4156966

Part 5:
https://www.healingwell.com/community/default.aspx?f=30&m=4158858

Part 6:
https://www.healingwell.com/community/default.aspx?f=30&m=4160694
Posted 11/9/2019 3:49 AM (GMT 0)
I am doing good. 125mg a day, really powering through the week thanks to Turmeric 3x tablespoons twice a day with pepper. Turmeric has been a game changer to keep the brain inflamation down. I am in control of the co-inffection with vicks vapor rub + oregano oil every night all over my neck, epson salt showers, and twice ivermectin cow wash in the shower. I actually have no sign of co-inffection the past few days. Daily Turmeric, Magnesium Citrate, zinc, selenium, meat and yogart. last weekend was fatigue with herx. I had a major herx monday morning. Tuesday-Now -- I have felt absolutely wonderful. EXCEPT every night before going to sleep ... each night for about 5-10 minutes I get what I think is neuropathy. Can other people describe their symptoms? I will try to explain mine. When I lay down to rest, 10-30 minutes I can feel it coming. Everything is really dark all the sudden and I have zero sensory input -- I can't tell which way is down for about 2 seconds and I feel like I am falling (?), my heart might skip a beat, or I forget to breath. realllly scary stuff. It feels like I am dead for a split second. But I'm actually just ignoring it and power through it. I can feel it "coming on" and can "psyche" myself to prevent it or move. I have accepted this now, it doesn't appear to kill me and goes away. It is not getting worse. Then I sleep normally, wake up, and feel fine. I feel really good, like slight less then just being a normal person as a baseline. I am slightly weak and stressed however. My liver and kidney both hate me, I can feel irritation and pain.

lots of detox with charcoal in a pill and spirulina tablets during the day, water, coffee. I really feel an improvement. End of week 4, Sunday will start week 5....
Posted 11/9/2019 5:53 PM (GMT 0)
Jova - FYI - I’ve had my worst herxes on bart treatment - I mean brutal - take me to the hospital brutal

So be prepared -

I wish there was an easier, less painful way to get through all this.

I herxed last night after my last dose of bart meds.
High heart rate, fever, back pain horrendous.
Thought I was going to have to cancel my plans today - going to Costco with a friend.
I’m not fond of that store anyway

But, surprisingly I was able to sleep and woke up today with no back pain - the best I’ve felt in a long time.
Posted 11/9/2019 8:27 PM (GMT 0)
Sorry you’re suffering Jova.

Maybe it would be best to just treat the bart for now - you could end up herxing in that.

What dose of riffy and doxy are you on?

You are bound to feel worse - as these infections have been building for awhile.
Posted 11/9/2019 9:45 PM (GMT 0)

JovaLyme said...

Girlie said...
Sorry you’re suffering Jova.

Maybe it would be best to just treat the bart for now - you could end up herxing in that.

What dose of riffy and doxy are you on?

You are bound to feel worse - as these infections have been building for awhile.

Thanks Girlie.

I am definitely suffering. I've had these infections for so long and had no treatment at all until now and now that I am treating them I am herxing and flaring up like nothing I've ever known. My wife is talking about giving up work to care for me now, which isn't great because we can't afford for her to do that.

I've started the Rifampin at 300mg a day to start and 200mg of doxy just to ease myself into it. I believe I can go up to 600mg a day of rifampin and 400mg of doxy. I am just going by how I react to the meds. Still on 125mg of disulfiram as well.

I have some bactrim, but I am holding back on that. I think it's actually banned in the UK or only used in exceptional circumstances, so I'm a bit wary of it. I have some dapsone too, but I'm holding back as on that as well until I am less fragile.

I have to address the bartonella though. Disulfiram seems to be hitting the borrelia and something else and easing those symptoms, but the bartonella is flaring up like never before at the moment and I have to hit it with something. I'm really not in a good place right now.

I can't believe I am this unwell and having to buy meds online and treat myself. It's ridiculous.

====================

I not only bought meds online - I also had them sent to a forum member who had offered to repackage them and send them to me (ADC doesn’t ship to my country)
I also took meds that two forum members sent me.!

I’m usually a cautious person - so that’s a testament to how desperate I felt.

Yes the Rifampin dose is usually 300 twice daily - and some people take 600 once.
Doxy is 200 mg twice daily.

Doxy - you should take with food - it’s hard on the upper GI tract.

I would took my Rifampin on an empty stomach and then about half hour later I would take the second antibiotic with food.
Posted 11/9/2019 11:48 PM (GMT 0)
I also thought bactrim was banned in the UK.

Maybe not - Brian Deere was trying though.

https://briandeer.com/bactrim-septra.htm
Posted 11/10/2019 12:25 AM (GMT 0)

UnsightlyCygnet🌠 said...

Girlie said...
I also thought bactrim was banned in the UK.

Maybe not - Brian Deere was trying though.

https://briandeer.com/bactrim-septra.htm

===================

Christ, you're freaking me out tonight Girlie! 🤣 Just kidding lol. I read about steven johnsons syndrome you mentioned you were terrified. I've done the course and I do not think I will ever touch the stuff again!

Sorry!

After I got the lesions - I just wasn’t comfortable taking it.

I think people have issues from it but don’t even know.

Many years ago my MIL’s bicep tendon detached and “rolled “ up - she hadn’t injured it.

More recently When I learned about the fluoroquinolones bb warning of tendon rupture I wondered if my mil had been on them.
Sure enough my SIL said she had reoccurring bladder infections and was on those meds quite a bit over the years. (Cipro)

I bet that’s what caused her tendon injury.
Posted 11/10/2019 1:10 PM (GMT 0)
Ive had to stop DSF a stomach bug went through my house last week which has left me constantly nauseous. I'm hoping it clears in a few more days to restart.
Posted 11/10/2019 6:28 PM (GMT 0)

JovaLyme said...
I am definitely suffering. I've had these infections for so long and had no treatment at all until now and now that I am treating them I am herxing and flaring up like nothing I've ever known. My wife is talking about giving up work to care for me now, which isn't great because we can't afford for her to do that.

For someone who couldn't tolerate valproate, going straight to disulfiram was a pretty big risk. Valproate isn't nearly as toxic, and if I hadn't already knocked down the infections with it, I'd probably be having a much harder time tolerating disulfiram.

JovaLyme said...
I have some bactrim, but I am holding back on that. I think it's actually banned in the UK or only used in exceptional circumstances, so I'm a bit wary of it. I have some dapsone too, but I'm holding back as on that as well until I am less fragile.

Bactrim really messed with my sodium and creatinine. It's not quite as bad as some people have claimed, but it's risky.

Dapsone is particularly risky as its antifolate effect is much stronger than bactrim. You really should be having lab tests to check folate, B12, hemoglobin, iron, and homocysteine.
Posted 11/10/2019 6:50 PM (GMT 0)
You must supplement with leucovorin or take high doses of folic acid while on dapsone/daraprim
Posted 11/10/2019 9:39 PM (GMT 0)

JovaLyme said...

Disulfiram has been working. It's an experiment, I'm just going by my own situation, reactions and tolerance of it. It has made me herx really badly and that's probably because it is the first thing I've ever taken that is actually effective against the infections I have. Now that Bartonella is clearly flaring badly I'm having a go at that with rifampin and doxy to start with. The bactrim and dapsone are there for when I'm less fragile. I've got to look in to the folate and everything else before I ever take dapsone. I've already found methylene blue to be pretty potent against bartonella. It definitely makes the symptoms flare.

I'm having to treat myself for a potentially life threatening, long standing case of Lyme and co that I've had no help for at all. I'm glad I have tried disulfiram. It's working, I herx on it and it has made other things flare so I can get a better idea of what infections I have and treat them too.

Oh, disulfiram works. It just makes me moody, interferes with sleep and makes me smell bad. I had labs done and my liver enzymes are okay.

You've got to watch out for those bart flares. I've found minocycline is pretty good at killing it when it flares.
Posted 11/10/2019 9:41 PM (GMT 0)

Girlie said...
You must supplement with leucovorin or take high doses of folic acid while on dapsone/daraprim

And malarone too! I found that out the hard way...
Posted 11/10/2019 10:11 PM (GMT 0)

Quin said...

Girlie said...
You must supplement with leucovorin or take high doses of folic acid while on dapsone/daraprim

And malarone too! I found that out the hard way...

Interesting I was fine on Mepron - double the usual dose - didn’t supplement with leucovorin.
I did take a low dose of folic acid supplement but not consistently -
Posted 11/10/2019 11:16 PM (GMT 0)

JovaLyme said...
I don't know why, but dapsone in particular really scares me. I've got some, but I don't think I will ever take it without medical supervision like I am doing with disulfiram.

Bactrim is something I don't think I will be taking for a while either.

I know it's Horowitz's wonder drug (according to him) but there's something about it that worries me.

People either swear by Bactrim or its horrible on them. You read the reviews and you would think every other person is suffering from it but its prescribed for every other UTI.
Posted 11/11/2019 1:29 AM (GMT 0)

oregonhay said...
I am in control of the co-inffection with vicks vapor rub + oregano oil every night all over my neck, epson salt showers, and twice ivermectin cow wash in the shower. I actually have no sign of co-inffection the past few days.

I realize it might be off-topic to antabuse but where can I hear more about this dermatological process of putting ivermectin oregano and Vicks on your neck? Thanks

Posted 11/11/2019 1:42 AM (GMT 0)
Stetsonva,

I put 1/4 tea spoon of ivermectin cow wash concentrate in a bucket of warm water and use a USB shower head at the end of my shower. Contains alcohol but it is diluted to the point it doesn't matter 1/4 tea spoon : 5 gallons warm water

for vicks vapor rub, at night, I put 1 drop of oregano oil into the container and mix it up about once a week. Then I put it on the problem spots, usually my neck and behind the ears but sometimes my arms.

I am getting other essential oils in the mail this week (about 8 different ones) besides oregano oil, and a better carrier oil (some kind of fractured coconut oil base) instead of using vick's vapor rub
Posted 11/11/2019 1:45 AM (GMT 0)

JovaLyme said...
It's more dapsone that scares me for some reason. I don't know why.

After my folate got completely screwed by malarone, I don't want to try dapsone.
Posted 11/11/2019 1:57 AM (GMT 0)
UnsightlyCygnet: If you haven't seen this already- the enteric capsules should increase the absorption of DSF making the effect of the dose much stronger... 2.7x stronger is what is being estimated by some in the FB group.

When I start up again I'll probably do 62.5 mg every other day or maybe even every third day, rather than daily as I had been.
Posted 11/11/2019 2:33 AM (GMT 0)

JovaLyme said...

skinny_joe said...

JovaLyme said...
I don't know why, but dapsone in particular really scares me. I've got some, but I don't think I will ever take it without medical supervision like I am doing with disulfiram.

Bactrim is something I don't think I will be taking for a while either.

I know it's Horowitz's wonder drug (according to him) but there's something about it that worries me.

People either swear by Bactrim or its horrible on them. You read the reviews and you would think every other person is suffering from it but its prescribed for every other UTI.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

I am a little worried by it.

It's more dapsone that scares me for some reason. I don't know why.

========================

I tried bactrim first - was scared to take it (had googled SJS and could not “unsee” the photos) but went ahead and ended up with some lesions - after a few days on it.
The PA at the clinic looked at the photos I sent and didn’t think it was anything to worry about.
But I had already worked myself up to a hysterical level so I stopped it.
And they gave me a substitute.

FWIW I did not get a reaction from Dapsone or Daraprim.
Posted 11/12/2019 1:29 AM (GMT 0)
UnsightlyCygnet

This is my second attempt at DSF week 5. My reaction to alcohol has been none to nothing this time. I am at 125mg with one spike at 250mg a few days ago.

The first attempt I had a major reaction to alcohol, specifically gasoline. I went to fill up my tractor (gas) and almost threw up. This time I hardly notice.

I also accidentally took some ethanol based tinture. It did nothing.

Vaping doesn't cause any issues and I vape a lot.

I think my system has overcome the effects of DSF with tiny accidental dosages of alcohol. But don't ask me to drink a whole whiskey. I am planning on someday long after DSF to celebrate though.
Posted 11/12/2019 3:16 AM (GMT 0)
Update: I don't understand why I'm not herxing unless increased anxiety/depression and stupidness counts. I'm not even sure if I spelled stupidness right or if it's even a word.....

Where is the crying emoji?
Posted 11/12/2019 10:43 AM (GMT 0)
I never had any reactions to small amounts of alcohol, such as hand sanitizer or soy sauce. However, I am only taking 50 mg disulfiram.

I haven't had any neuropathy or hair loss from either valproate or disulfiram. However, when I was taking valproate, I took the enteric-coated pills (Epilim EC). I don't know if that made a difference. Both valproate and disulfiram can form copper complexes.
Posted 11/12/2019 4:08 PM (GMT 0)

UnsightlyCygnet🌠 said...
How frequently are you dosing? Yeah the EC pills - disulfiram at least - make it more bioavailable. The copper is responsible for neuropathy so avoiding that is something I'd prefer. I am going to start very low, for a while.

50 mg per day for the last 2 days, but before that I took a break due to herxing.

I got the "effervescant" Antabuse pills. They really aren't fizzy like Alka-Seltzer though. The pills just dissolve. Definitely not enteric coated though.
Posted 11/12/2019 8:12 PM (GMT 0)
Thank you UnsightlyCygnet and JovaLyme, I just increased my dose to 62.5 every other day. I think adding herbs is a good idea particularly since there is now talk that DSM may just be a biofilm buster. So either your immune system is strong enough to fight off the spirochetes or else you may need to add something. I'll probably add oregano oil since it has been shown to kill just about everything Lyme related in studies. I've taken it before and it helped. I just add about 10 drops to a veggie capsule and take one 3 times a day. Oh and I add a bit of olive oil in with the oregano oil as well. Make sure to get a good quality oil if you do this of course.
Posted 11/12/2019 10:44 PM (GMT 0)
Hey Jova/Cygnet,

I heard about it in the Facebook groups. Something that was apparently mentioned at a recent Lyme conference, but nobody really knows for sure. It's just speculation at this point.

It's looking like the sickest patients aren't able to go up on DSM that quickly. I just increased my dose and am already having a hard time tolerating it. They are also finding that much lower doses may be just as effective. Again, this is all so new but one thing is certain. Go low and go slow.
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