Disulfiram - Part 11

stevia MIGHT be bad. Not sure

Japanese knotweed I tried and didn't have a issue

Gou Teng /cats claw never did anything for me and I stopped using it years ago. No idea if it is bad or good on DSF.

I hadn't taken any disulfiram in 2 weeks. Aside from the herxing, I was feeling okay.

Yesterday I got some diarrhea and I went into ketosis. Then I felt weird, like my blood sugar was getting screwed up, and I couldn't get to sleep. Blood sugar tested normal. Finally got to sleep around 2 am, then woke up with nightmares a few hours later, and had to pee real bad.

Disulfiram, the crazy feeling that keeps coming back.

My head feels so horrible and has done ever since doxycycline in October. I was in two minds about going to neurology, but I've decided to bite the bullet even though it'll cost me a fair bit to travel, that and the psychological damage of being told I'm mad.

Been having endless nightmares, sleeping poorly, wake up gasping for breath with throat spasms.

But I'm just gonna tell em I might as well top myself if they think there's nothing wrong with me.

I'm living hand to mouth. Having to take stuff to the pawn shop to be able to afford herbs. That and I've bought more disulfiram - orders gone through and I've already paid. Fun times...

Waiting for Tuesday to come round. Every other sound sets off an almost seizure. I'm in my flat that doesn't have heating, unable to leave my bed. Feeling like life isn't worth it anymore - again. I've been having super bad rage attacks as well. Punching cupboards again. I hadn't the energy to do any of that till the disulfiram.

I haven't been able to lay down horizontally for 10 weeks. The pressure in my brain is horrendous and I hope they see sense or that I die in my sleep peacefully. That or an overdose looks appealing.

Please slow down.

I don't know why folks are taking so much. This is a long duration drug youll be on it for 6 months or more. Ive been on it now for 70 days and just started 125mg daily and will be on that for another couple weeks before i go up. Hitting 500mg or for that matter 250mg in a week or two is just flat out dangerous and usually results in very bad events.

The drug is not scary if you slow down!!

Post Edited (skinny_joe) : 12/5/2019 10:56:19 AM (GMT-7)

dcd2103 said...
If you need to talk man, we can exchange emails and set up a phone call. Aside from that, I like the idea of getting off disulfiram and doing a cleanse.

I too have been feeling a sense of anxiety and deep frustration and anger this week. Its odd, everyone seems to be complaining about anxiety this week. I'm not sure if mine is from die off from the bicillin, or just frustration with this disease hitting a boiling point.

Thanks dcd2103 I'll make my email available in the profile. I'm too sick for a phone call if I'm honest. Sounds stress me out to hell, have a spaz attack whenever something unexpected happens.

Don’t worry man, we’re with you. We’ve all been there. Have our ups and downs. It will pass.

I’m just going to stick to 62.5 in the morning and 62.5 at night for the foreseeable future. Don’t see the need to increase. I’ve done the 250 and the 500 so there’s def work that’s been done.

I don’t even see the need to really increase. We don’t even know if more than 125 is required to eradicate it. It’s all just guesses at this point.

Maybe take that 1-2 weeks off and let it get out of your system and reset. I’m sorry about the money troubles. Maybe start a go fund me and post it on the Facebook group? I feel they will be very understanding and help out?

JovaLyme said...
Get off the disulfiram buddy and stay off it. Two weeks and this sh!t will be out of your system.

That was not my experience. I got a disulfiram 'flashback' after more than 2 weeks because I lost weight. Disulfiram gets stored in fat, and comes out when you fast.

Jova, did it aggravate your autoimmune issues? Wondering if it’s ok to use for people like us a autoimmunity

JovaLyme said...

skinny_joe said...
Several doctors start patients at 30mg per week if they are very unwell.

JovaLyme you took a high dose very quickly despite folks pleading with you to go slow.

I started at 62.5mg a day for about a week and then went up to 125mg.

I was on it for 4 weeks and never went higher than 250mg and that was only for a few days right at the end.

Rainy is at 500mg already!

Personally, I think disulfiram is a lot of hype. It might be OK for those who have been treating for years just to finish things off, but I really don't think it is quite the miracle drug it has been made out to be at all.

Honestly it's been odd. I don't know when I am herxing and when it is the lyme.

I have seen for periods where I felt very close to normal. So I think it is just a matter of time and finding the dose. No light sensitivity, no twitching, no pain (though I only get pain when I herx, not at my baseline), no fatigue. You may be right and it may be a certain people think but Dr. L has been treating about 100 people and says it has worked wonders, so let's see.

Hey folks,
Im really sad from this news - I hope you will be better soon!!!

Im ready to start DSF next week - drug arrived, today I was on liver & kidneys tests and hope all is good and ready to go! Im trying to prepare for two months - lot of B-vitamins, lipid replacement, zinc support, mitochondria support and now ending Okra as mycotoxins binder.

My main problems are hard CFS (mostly bedridden) and massive feeling of inflammation. Im really curious, what happens! Plan is start really slow and make lot of detox with epsom salt baths, bentonite clay and sauna.

Neuropathy and more fatigue are biggest and scarriest worries for me, but my EMG was fine all times...no neurologic findings.

If you have more tips to get started, please let me know!! thanks a lot and big support for all DSF patients!

Martin

Update time!

I’m on week six of DSFM. I started my first month at 250 mg per day, and a couple weeks back upped my dose to 500 mg per day (adult male, 170 lbs). In addition, I’ve been taking Plaquenil, minocycline, and rifampin. Supplementing with lots of vitamins and minerals. This is a very aggressive regiment, but I’ve been treating for a long time and had made great progress before ever starting the DSFM. Primary infection at this point appears to be bartonella, as evidenced by the distinctive rashes that manifest when adding effective killing agents.

about three days ago I had an intense Herx. Within two hours of taking my dose of 500 mg I had a sudden onset significant abdominal pain and discomfort followed by two hours of extreme, unrelenting diarrhea. I was concerned it was c-dif, but it seemed to resolve after two hours and I was fine the next day.

What’s noteworthy is that it I have absolutely been experiencing more frequent bartonella rashes since adding DSFM into my regiment. I don’t know whether as a singular agent DSFM effectively kills bartonella, but in combination with my other meds it definitely appears to be inducing significant herxing. For those struggling with bartonella, I believe that DSFM is likely an effective treatment when used in conjunction with other proven antibiotics.

While my overall functioning is good, today I am feeling crappy. My primary remaining symptoms are joint stiffness and cracking, which seem to worsen with increased inflammation. I believe I need to increase my detox protocol, so I will be taking more Epsom salt baths, drinking more lemon water, and adding bentonite clay into my regiment. I have not pulsed or taken beaks from my drug regiment since starting DSFM, and suspect that my body is struggling to detox that amount of bacteria Im killing. I’m hoping that by pushing forward aggressively with this regiment I can break past the plateau I had been stuck at before beginning DSFM.

TLDR: Six weeks in, DSFM is absolutely doing something for suspected-bartonella.

Post Edited (201000cb) : 12/6/2019 10:32:04 AM (GMT-7)

Yes.

Charlie - Jova and Cignet are not the same person.

I don’t think Jova is “here” anymore