Disulfiram - Part 9

You're the best UnsightlyCignet! I'm praying for you too

The herxing is pretty mild today, which is nice.

Last night I felt weird though, like my brain was malfunctioning lol, hard to explain, wasn't too bad but just a bit uncomfortable.

Yesterday I thought it was going to get worse today, but it didn't which was a nice surprise.

I even considered going to 250mg tomorrow, but I'm still on the fence.

How are you feeling?

Rainy Cloud is 100% correct don't take MB if on Psych meds. Some people are showing promising results at high dosages in the MB group on facebook that's why I was wondering. Since, it seems DSF does not take care of Bart and for most of us that are sick we have Lyme+Bart or Babesia.

UnsightlyCignet☄️ said...
Oh Christ, well then. I get the rib pain, pain in my sides, no stretch marks though. No headaches either. I'll order some soon enough, when I see how the Disulfiram works.

This is mad. I'm buying medicine from the internet so that I don't DIE! Oh dear, this makes me laugh haha.

Thank you Girlie. Excuse the humour, I'll be fine. It's been an absolutely horrible year I've just deteriorated and deteriorated up until now.

I’ve also bought meds from the internet - it was more “sketchy” when I did it because they didn’t ship to Canada... luckily a US friend (from the forum) offerred to accept them and repackage and mail them to me.
“Desperate times call for desperate measures.”
And that statement sums up exactly how I was feeling at the time.

UnsightlyCignet☄️ said...
What are Bartonella symptoms?

This: https://www.healingwell.com/community/default.aspx?f=30&m=4166290

Blog article by a doctor treating a lot of patients on DSF.

https://www.lymedisease.org/disulfiram-kinderlehrer-2/?fbclid=IwAR1lrn87XRIOUnx-9PNw1pGHpZE1YfuwdbyFPUqeaf1ENCXd7ST8PYgJDXs

Hey all,

Alright, so I am now 2 full weeks on 500 mg of DSF. I was on it before on and off, didn't do anything for the first few weeks at the low dose, then I jumped to 350, and then the herx was too bad so I took a few days off, then got off of my antidepressants and the withdrawal with the 250 a day was too much.

I officially went back at 500 mg two weeks ago, said I will fight the herx and here are the results:

-joint pain is almost completely gone with some here and there pain, but for the most part it is gone
-head pressure is significantly less though not where I want it to be
-light sensitivity is significantly less though not where I want it to be
-sleeping again with no sleep medicine
-anxiety has significantly decreased with that light at the end of the tunnel there
-very tired during the day, sometimes need to nap at 4:00 PM

I feel better, and I can see me being 100% or near it in the next few weeks/months.

I went for a run the other day in the freezing cold. I was terrified it would put me to the bed at any physical exercise had in the past but other than a migraine, I feel fine.

I am not taking anything except L-Ornithine, and a few herx fighters (alka-seltzer gold, broccoli sprouts, lemon water) and DSF.

Feel free to ask questions.

I am sure the reason why people disappear is because they are moving on with their lives and excited at that prospect. If they were not improving, they would be back to posting here about do not know where to turn to.

The issue with DSF is people are not ready for the herx, and as a result are taking too low a dose or not taking it long enough. This is not an over night fix, so I understand people may not be ready to take the time off work and do it, but everyone who has taken it at high doses and consistently whom I have come across are saying the same thing.

Again, maybe this is just what I have seen, I am trying to just pass on the info.

Good luck and god bless.

Feel free to ask.

Chiledog said...

JovaLyme said...

Chiledog said...
Rainy Cloud is 100% correct don't take MB if on Psych meds. Some people are showing promising results at high dosages in the MB group on facebook that's why I was wondering. Since, it seems DSF does not take care of Bart and for most of us that are sick we have Lyme+Bart or Babesia.

What kind of dose of MB are people taking on the Facebook group? I have no idea what dose we are supposed to take.

I took MB while on disulfiram and it definitely seems to do something to Bartonella symptoms. I was afraid to up the dose because of the horrible nerve pain I was getting on disulfiram.

It's a real shame that disulfiram gave me such bad neuropathy because it did feel like it was doing something and the MB was also helping.

I know Dr H is prescribing 50mg twice per day for both Bart and to help with Dapsone side effects. He also mentioned that he would begin to go higher on dosages because one of his patients had sent him a malaria article with higher dosages.

On the Facebook group some people are going as far as 500-800 mg but only a few so far. There’s some studies done for malaria where people took 13mg/kg for about a week and were fine. The only long term studies where at about 300-400 mg for about two years with no major side effects. That’s all they seem to know for now.

Steelofgreens did you only have borrelia? Or more co infections? Did you use enteric capsules or just regular DSF?

Babesia, bartonella, ricketsia.

As time is going on at the high dose, the joint pain holistically is dying down. I usually don't have it.

The symptoms now flair up during the day, but slow it is less and less.

I am on the capsules of DSF, not sure with enteric capsules are.

Thanks RainyCloud.

Could you summarize your dsf schedule so far?
You’re taking it daily (not skipping days)?
And slowly increasing?

Day 6 = 250
Day 5 = 125

What was dose for days 4,3,2,1?

This thread is super helpful even for those of us who are still just contemplating taking it.

Good to hear from you UnsightlyCignet.

You are in my prayers.

So glad you don't have major herxing yet.

Let's hope it stays that way!

Hi UnsightlyCignet, I'm so glad you went back to sleep.

It's important not to exhaust ourselves.

I get those glimpses of normality too, they are very interesting.

Hope you are doing well.

Tomorrow I will be taking 500mg of Disulfiram.

Let's see how that goes too

Tip for those on (or considering) disulfiram: drink lots and lots of water.

It seems to keep the side effects at bay.