Disulfiram - Part 3

Continuing this thread. Here's part 1:
https://www.healingwell.com/community/default.aspx?f=30&m=4143796

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

Anyone using DSF want to give an update on their progress?

Good luck...and please keep posting so we know how you are doing with it.


i'm glad you were able to purchase it.

I have quit taking Disulfiram about 11 days ago. But not because it wasn't helping, it was. I was having pretty strong herx reactions, and previous to this I had several days of fatigue, back pain, itchy skin, but it was consistent with die off from all of my other treatments. My intense herx were followed by better well being and getting better.

However I stopped because I started a new job and probably couldn't go through the several-days-a-week ups and down and then normal for a few days.

however, 11 days later, I'm still herxing (?)

it should be out of my system soon, but I think the method of action that was theorized in other threads might be true, and if I remember correctly, it affects lyme so they can't reproduce with some kind of copper ion exchange, and because of the long life cycle it takes a while for them to die off because they have to go through their life cycle. This was a theory, I wonder what is actually going on. What I am going through seems to correlate with this. I am also worried that I'm not able to figure out if this is a series of continuous herx or if it growing back stronger. I do feel really good and everyday seems to be better. I am having near extreme to normal die-off toxin issues. I wonder how long this will last... given the life cycle is 28 days.. 28 days?

I want to start this back up again after I settle in to my new job, this was the plan the whole time. In the next 1 to 2 months. That is if I can hold down this job, which I'm sure I can as long as I can detox. But this whole thing was a surprise, I was suppose to be in an in between area, but I'm still fighting die off toxins. Do you guys think it could be something else?

Thanks potsnpan.

I wanted to be a bit clearer, I believe that even if the disulfiram is out of my system I am going to continue to experience die off. And I think this is because it damaged the lyme reproductive system. And I may have it out of my system already and I am experience this right now. This is pure 500% speculation but it is the only idea I can come up with because I am experiencing significant die off symptoms today, and continue to feel better.

I've been taking Disulfiram for a few weeks now. Herxing hasn't been too bad so far. I have had some random feelings of neuropathy / paresthesia in hands and feet since starting which is disconcerting. A lot of Lyme people taking DSF seem to be getting this but nobody is completely sure why.

My brain has felt better and better. Like better than I can even remember. I don't think I've done any treatment that is so effective for neurolyme.

So despite the weird bouts of numbness in hands and feet I am pushing on.

"I have a feeling that because Disulfiram is so effective at killing the bacteria you could be experiencing significant die off as you say. The way I see it if this stuff kills bacteria, I'm going to suffer somewhat, but that is the price I will pay for killing this bacteria and eventually feeling well. ... What coinfections do you have? Were you taking any supplements or anything with it? From what I can work out you can take some NAC, but not a lot else while taking Disulfiram."

None of my tests returned positive. By the time I found a LLND, I was completely broke and out of luck. I was barely able to get to Portland to see my LLND. They were incredible and helped me when nobody else would. With my medical history and evaluation, they clinically diagnosed me on the spot. We did not do any co-infection tests, but at a later follow up my LLND said I probably do not or if I did, the treatment protocol would be the same. And my protocol was showing positive improvements. I think this was 2017, 2018, and my last visit April 2019.

So if I have co-infections I don't know.

Yes I am taking NAC every once and a while. At one point it made me sick, and some times it didn't.

I think you need a ___war chest ___ of detox products and protocols before taking Disulfiram -- anything and everything. If everything fails, my goto is to eat a bunch of calories to gain fat to temporary store them until I can get back to fasting -- which also works. My "go to" is Spirulina Tablets, NAC (sometimes), "Mint" Chlorophyll (apparently .. don't take this on Disulfiram), Physillian Husk fiber mixed in with Greek Yogart, Epson Salt showers (5 gallon bucket + 2 cups of epson salt, and a camping hose)... search this form and find out what other people are doing and have a half dozen strategies. Another one I am using is Vick's vapor rub -- all over my face, any itch, behind my ears, and neck.

I don't think you should take anything treatment with Disulfiram. Or any supplement. Something really weird
is going on, your body is already in emergency mode with lyme and this puts it in "over drive".

I would say get as healthy as possible with whatever treatment works for you first. Think of lyme as a bad roommate. Gain as much strength as possible. if you can't exercise, taking herbs and just moving blood around worked for me. I would take my tea (basically all of my herbs steamed, a dozen or so, with stevia) get on my stationary bike at the lowest setting and peddle for 45 minutes sometimes 1 hour to get the blood going. This gave me strength.

Also I should disclose that because I started this job I did take Amoxicillian for a few days before "just incase" and I started up my regular herbs -- oregano oil pills, garlic 5000mg extract, and black seed oil. I usually make my tea, but without stevia (mine contains alcohol and I have to wait 2 weeks for DSF to leave before using alcohol) it tastes really bad.

So just like project said, the herx isn't THAT bad. You can function normally. Just the feeling of "Hey, this is working!" gives you the spirit to deal with it.

I started at 50mg ... got up to 250mg a day before having to quit. I think I did 6 weeks. Once or twice a week I couldn't sleep. I can't afford that risk right now. Two weeks

I had fatigue on DSF but it went away after 3 days.

If you are inbetween jobs, if you are as healthy as possible (you can deal with lyme as a "bad roomate"), if you can establish all interactions with any herb, protocol, food, etc between DSF <-> whatever, if you can figure out the "load up" half life and your body weight, if you understand the precautionary principle, ... and if you have a warchest/good strategy for detox, I would say YES do it. Otherwise I guess we're at the point were we are waiting for the "experts" to give us the "OK" -- lol. Your call!

But is the neuropathy from the disulfiram temporary - ie does it resolve after cessation of the D?

Thanks for the detail oregonhay. I have Disulfiram at home now but I am waiting until next week to start, as I have a union convention all week and will need to drink and seem normal.

JovaLyme, I asked if it was a spider bite or considered a nematode parasite, because for me personally -- and I am no expert, I think I got lyme a long time ago and my body fought it successfully, put it in remission. But then one day I got bit by something else, or a tick. I think what happened was a parasite brought lyme out of remission and... then, rendered the parasite more powerful. Just the parasite alone would have been fine. And just the lyme alone might have been fine. But together, it was just to much.

Like you could get lyme, take antibiotics for two weeks and be fine. But 5...10...15 years later, it can come back if you get a co-infection.

I think this because some of the symptoms I have are the same from when I was in high school and fell ill for a brief period.

Again I am extremely speculating.

Interview with Dr. Jayakumar Rajadas (first researcher that has found Disulfiram activity on Borrelia)

https://www.youtube.com/watch?v=fgbzphwhvje

Interesting about the family ties being severed.

My mom passed away several years ago from colon cancer.
My father passed away a few years ago (I was very close to him)

Since then I don’t speak with my bro or sister. They lead very dysfunctional lives and when my father passed - things blew up between us.

I do have some good close friends and an Aunt who are sympathetic and supportive - so I do feel fortunate.

Yes it’s in Australia.

There are lyme groups/associations


https://www.lymeaustralia.com/history--borrelia-species.html

Was told to move this here, sorry girlie:

Hey all,

Three weeks in. I started on the 125 every third day, and now three weeks in and I am taking 375. Yesterday I took 500, a bit earlier than reccomended but I am 190lbs so my doctor said it was fine as I wasn't getting a big herx.

Going to move to 375 for the next week cause the herx sucks.

There is definitely something going on. I am starting to get very tired, eyes feel like they are squeezing currently, but there is something that I can't explain. It's like I could see when this dies down from the herx that I can be myself again.

I am not going to really comment until I am 1.5-2 months in which is where everyone says they have seen huge changes, but depends on how long I am on as theres that battle currently going on between herxing and symptoms being lifted lol. But there is something I feel that will come of this, and that being living life again and going back to work.

I was taking mirtazapene 30MG to sleep and now I have cut it down to 6.5. Still groggy sleep but sleep nonetheless. Slowly weaning myself off.

Will keep all updated but for all wondering, I wasn't herxing, I have now increased my dose and am getting mostly head pressure and all herxes, with not pain in my joints but this weird sensations in my hands and feet.

God bless. I will be back in a few weeks.