Disulfiram - Part 13

I had some candid.

I got a script filled from Hopkington Drug yesterday, $108 for 60 250mg capsules plus shipping. Can't wait for shortage to end.

I should have commented that the Hopkington Drug script is for 250 mg capsules so pretty difficult to break up into small doses as described for new patients recommended to start slow at 62.5 mg per day and ramp up.

I was already up to 375 mg per day tagging tablets for tacking a 500 mg a day was no problem.

oregonhay said...
gfields,

After meeting with my doctor twice, and taking blood tests, and pressuring my LLND doctor twice about that, he assures me Yes this will be a permanent fix. My immune system has picked up and is doing the rest. Occasionally I wake up with a similiar-to-disulfiram-hang-over-herx that I use to get, meaning my body fought something. But it isn't to bad. I expect to have these for an additional 6-8 months as small amount of lyme break out and re-enter my blood stream or an area my immune system can hit it. But again it is a very very small amount and I am 100% functional -- I am working out, eating, making plans, schedules, continuing on with my life. Disulfiram was extremely harsh and I wish I had stayed under 300-400mg, 500mg was kind of to much. And when I stopped, it was with my doctor. I didn't suddenly feel "well" infact I still felt bad for probably 6-8 weeks like I was still sick but I trusted my doctor and every 2 weeks I felt 2x better to eventually close to zero issues.

This is great news, congrats oregonhay. Did you have Bartonella too?

oregonhay said...
gfields,

After meeting with my doctor twice, and taking blood tests, and pressuring my LLND doctor twice about that, he assures me Yes this will be a permanent fix. My immune system has picked up and is doing the rest. Occasionally I wake up with a similiar-to-disulfiram-hang-over-herx that I use to get, meaning my body fought something. But it isn't to bad. I expect to have these for an additional 6-8 months as small amount of lyme break out and re-enter my blood stream or an area my immune system can hit it. But again it is a very very small amount and I am 100% functional -- I am working out, eating, making plans, schedules, continuing on with my life. Disulfiram was extremely harsh and I wish I had stayed under 300-400mg, 500mg was kind of to much. And when I stopped, it was with my doctor. I didn't suddenly feel "well" infact I still felt bad for probably 6-8 weeks like I was still sick but I trusted my doctor and every 2 weeks I felt 2x better to eventually close to zero issues.

That's very encouraging oregonhay. It's nice to hear some good news.

Do you mind if I ask what your regiment was like? How long were you on the 500 mg? Did you have to work your way up? Were you doing a cocktail type thing with some other abx?

I have almost reached my financial goals, and I was hoping to be able to take a couple months off work and try a treatment. Maybe I'll give this a shot.

Thanks!

Hi oregeonhay, Great link! Thanks so much. I think I will attempt to follow this protocol. I'll need to quit my job and collect UI in order to pull this off financially.

That's quite an extended ordeal that you went through. I'm glad that it has paid off!

What kind of abx were you taking?

Hi.yes I have poor sleep and horrible nightmares.My headaches have been on and off .I use the nerve detox pinella and burbur and it helps with the headaches.quote="RainyCloud"]Does anyone else have terrible migraines and nightmares/poor sleep on disulfiram?

My head has been killing me.

I had to quit a couple weeks ago (again) and it's still hurting.

Thank you Familymatters and fjdrill.

I've been at 375mg since early March, For the past two weeks fatigue, insomnia and headaches have been pretty extreme and herxing so bad with nerve and joint paint that I have started back back on Gabapentin to help sleep. I feel like I did back over seven years ago just starting heavy abx treatment.

about two or three weeks ago I did start using 250mg capsules compounded by Hopkington Drug. Not sure if they used enteric capsules or not, but they do feel a bit stronger than the white 250 mg pills I started with from CVS. Since I still had some pill form left, I've been taking a capsule at night and a 1/2 pill in am to stay at my 375mg daily target. When the pills run out next week, I'll need to decide to go up to 500mg a day, or take two capsules one day
and one capsule the next day to maintain my 375 mg daily average.

I would like to try to go to 500mg daily for my last month to really push the bubble, but the compounded capsules from Hopkington are pricey at $108 plus shipping. Has anyone seen if any of the big chain national pharmacies get their supply issues resolved yet? or are all of you getting compounded supply like me?

Post Edited (tickbite666) : 5/14/2020 5:01:08 AM (GMT-6)

Thank you so much skinny_joe!

Thank you cignet!!

oregonhay did your LLMD recommend Dihydromyricetin?

Also, I was wondering, did you just take it when you accidentally had traces of alcohol or did you take it every day?

I would love to know more about this.

Thank you so much skinny_joe, that's really helpful!