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Disulfiram - Part 12

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Posted 12/10/2019 11:25 PM (GMT 0)
Thanks for sharing NYHenry! Just curious, is there a doctor monitoring you through treatment?
Posted 12/10/2019 11:51 PM (GMT 0)

potsnpans said...
Thanks for sharing NYHenry! Just curious, is there a doctor monitoring you through treatment?


Pots do you have bart?
Posted 12/11/2019 12:00 AM (GMT 0)

potsnpans said...
Thanks for sharing NYHenry! Just curious, is there a doctor monitoring you through treatment?

Yes I meant to include that in my post. I am being treated by a LLMD and I’ve had regular blood tests throughout treatment.
Posted 12/11/2019 12:08 AM (GMT 0)
I took disulfiram 3 weeks ago, and I'm still herxing from it. It lasts a long time.

Most of the acute effects (eg hypomania) from disulfiram are gone now. Mostly I'm just very tired.

It seems to have stirred up some dormant bartonella. When I take minocycline, I get a herx from this (itching, bloating, smelly diarrhea). I missed some doses of minocycline because I haven't been feeling well (either diarrhea, or just sleeping).

I'm noticing that some of the areas where I herxed before (from depakote) no longer hurt. So I'm assuming that those bacteria are already completely dead.

It doesn't seem like there is much left. A little itching on my toes (bartonella), and some pain in my arm muscles (borrelia). Despite there being apparently few areas still infected, I am getting a lot of fatigue and toxicity from the die off.

When I took depakote, I would do 2-4 weeks on, and then a month or two off to recuperate. This might be a good idea with disulfiram too. I only tolerated 2 weeks of disulfiram. It is more potent than depakote.
Posted 12/11/2019 12:27 AM (GMT 0)
No I don't have Bart as far as I know.

I have Borrelia B. and Babesia M.
Posted 12/11/2019 12:55 AM (GMT 0)

potsnpans said...
No I don't have Bart as far as I know.

I have Borrelia B. and Babesia M.


Do you get brain fog/light headedness/light sensitivity?
Posted 12/11/2019 12:58 AM (GMT 0)
Brain fog yes
Light headedness yes
Light sensitivity no not really
Posted 12/11/2019 1:13 AM (GMT 0)

201000cb said...
Well, this thread is madness.

Jova, I think you should take time off this forum for your own mental well-being. Your posts about disulafrim treatment have been erratic and, at times, seem unhinged to this observer.

POSITIVE UPDATE !!!!

Just over six weeks into Disulafrim treatment (first month 250 mg per day, then upped to 500 mg per day) and I’m starting to see real, significant healing! I’ve been treating aggressive bartonella that has survived years of antibiotic treatment. I added to disulafrim to combo of minocycline, Plaquenil, and rifampin that I’d been taking for months prior, but seemed to have plateaued on. The last few weeks have been painful, with many days where I wondered if disulafrim was even doing anything except exacerbating my suffering. Well, this past week I’ve been having windows where some of my most persistent are finally relenting!

My primary remaining symptom has been stiffness with constant “joint-cracking”, particularly in my neck, shoulders, and elbows. I’ve also had trouble maintaining healthy weight and muscle mass, despite disciplined diet and exercise. Well, I’m happy to report that it appears that these awful, nagging symptoms are appearing to dissipate! While they haven’t disappeared completely, I’m now experiencing periods where these symptoms are significantly diminished! My body feels looser and lighter, with less muscle tension and stiffness. The relentless “clicking” in the back of my neck that I’ve lived with for years even seems to be vanishing! While I’m not cured yet, at six weeks into treatment I’m see tangible results that no other drug combo has previously achieved in my five year fight against these infections.

I’m seeing a lot of people doubting the effectiveness of disulafrim, so figured I would chime in with some positive news! This drug is giving me back hope that I can actually reach remission!!


That's amazing. So you think it definitely is hitting Bart then?
Posted 12/11/2019 2:07 AM (GMT 0)

JovaLyme said...

isitlyme said...
There is one saying:

"Upon seeing the back of others, i see mine..."
Stay away from DSF, its a shoot in the dark...

Thats all i can say..

I wouldn't necessarily agree with that.

Disulfiram is clearly working very well for quite a lot of people. Unfortunately, like any pharmaceutical medication, it comes with side effects that will affect some but not others. We've seen both sides of the story in this thread, which is good because anyone considering it needs to have as much information as possible before they consider trying what is still an experimental treatment for Lyme.

I would hate to see anyone suffer the way Rainy, Cignet and myself have. I'm still deeply worried about both of them. They have both disappeared in the last few days after being two of the most prolific and helpful contributors to this thread in particular. Cignet is struggling badly in general and Rainy is now clearly in a very bad way. This should serve as a warning that disulfiram does come with some potentially serious side effects.

This thread is a general discussion about disulfiram, but in the past few days it has looked more like "The Disulfiram Appreciation Society" and the people who have suffered the very serious side effects of this drug have been attacked quite personally and blamed for what disulfiram has done to them. It's as if people refuse to believe that this medication could possibly cause the side effects it is known to cause despite one of then ending up in the ER and all 3 of them ending up with suicidal ideation and other psychological problems.

I really hope Cignet and Rainy are OK. It feels like they have been bullied off the forum because they have had a negative experience and the disulfiram fanboys clearly don't like it. The hysteria over this medication is bizarre. Yes, it clearly is helping people, but it's incredibly sad that those who have had a bad experience are being blamed for what disulfiram has done to them. Talk about kicking people while they are down.

It's looking like disulfiram is going to be a very helpful treatment for Lyme and the results of the official clinical trial can't come soon enough as far as I am concerned. We will all be a lot better off when this has been properly trialled, researched and understood as a potential Lyme treatment. We need much more information about how it works against Lyme infections and who should or shouldn't take it.

This thread should be telling both sides of the story and should also serve as warning to those self-treating with medication bought online. One thing that no one seems to be taking into account is the possibility that the disulfiram myself, Cignet and Rainy obtained online could potentially be a "not-quite-legitimate" version of this medication. Let's face it, we have absolutely no idea where this came from or whether it is legitimate. It could be that a reputable version of Antabuse obtained from a UK or US pharmacy wouldn't have done this to the three of us here. This highlights once again the failings of conventional medicine to help so many Lyme sufferers and the danger of the position they are being put in by trying to treat themselves with medication bought online.


That's a valid point Jova about getting it from a pharmacy vs bought online. Who knows the difference in the efficacy and approved cutting methods.

Cyg and Rainy, I hope you're both okay. Please post when you get the chance, we are worried and hope for the best.
Posted 12/11/2019 2:21 AM (GMT 0)

JovaLyme said...
Steelo, I'm getting really worried about both Rainy and Cignet.

Is anyone in email contact with either of them?

I never really considered the possibility that I could have bought some rogue version of disulfiram until now. It's weird the way 3 people have crashed so badly on it when so many others have nothing but positive things to say.

I'd actually be interested to know what version Rainy and Cignet took and where they got it from. I have the dizone version from ADC.

Not sure. I agree. I am definitely worried. Cignet seemed very positive as well. FFS. Hope you okay guys. Cignet was going very very slow as well :/
Posted 12/11/2019 2:37 AM (GMT 0)

JovaLyme said...
Where did you get your disulfiram steelo? What version is it?

I know that Cignet has got all kinds of things going on and is having a very bad time at the moment. His life almost seems to mirror my own and I've got a lot of empathy for him.

You're right, he did seem quite positive and was posting a lot of really useful links etc and then he crashed, started saying some very worrying things and now he has seemingly disappeared. I know he's not working right now and was more or less bedridden by the sound of it. I'm worried that he hasn't posted at all for more than 24 hours now when he had been so prolific of late.

Prescription from my doctor in enteric capsules from a compounding pharmacy. It had to be a compounding pharmacy.
Posted 12/11/2019 3:34 AM (GMT 0)
So I am an idiot guys and did not realize I do not have bart. I misunderstood by doc and Igenix. I only have babesia as a coinfection.
Posted 12/11/2019 3:38 AM (GMT 0)
How do you know you don’t have bart?
Negative testing can’t be used to rule it out.
Posted 12/11/2019 3:44 AM (GMT 0)

Girlie said...
How do you know you don’t have bart?
Negative testing can’t be used to rule it out.


I mixed up the names when my doctor was telling them to me. I had always thought they said bart when they said borrelia and babesia.

You're right that negative testing may not mean you don't have but looking over my blood results and remembering what they had told me, doesn't seem that I do. It is also another possible reason why DSF has actually worked for me. Those who have bart seem to have more trouble.
Posted 12/11/2019 4:23 AM (GMT 0)
I'm taking the ADC version (Dizone). I really don't think it's an issue as it has been discussed often in the FB group... seems to be just the nature of the drug (when in the body of a patient with Lyme and co.) Maybe it's heightened sensitivity, or maybe that our bodies don't detox as well...
Posted 12/11/2019 4:27 AM (GMT 0)

JovaLyme said...

steelogreens said...

JovaLyme said...
Where did you get your disulfiram steelo? What version is it?

I know that Cignet has got all kinds of things going on and is having a very bad time at the moment. His life almost seems to mirror my own and I've got a lot of empathy for him.

You're right, he did seem quite positive and was posting a lot of really useful links etc and then he crashed, started saying some very worrying things and now he has seemingly disappeared. I know he's not working right now and was more or less bedridden by the sound of it. I'm worried that he hasn't posted at all for more than 24 hours now when he had been so prolific of late.

Prescription from my doctor in enteric capsules from a compounding pharmacy. It had to be a compounding pharmacy.

That's interesting and also reassuring.

At least you can be sure you are getting the real thing and in capsule form, which is clearly the safest way to take it. Is it the Antabuse brand that you have?

I know Cignet was using the capsules, but I'm not sure which brand of disulfiram he was using or where he got it. I'm beginning to wonder whether some of these brands of disulfiram people are buying online could be part of the problem.

What brand are others using? Anyone here taking disulfiram they bought online and not having any issues with it?


They had to make it from scratch, so it isn't brand and is in the capsule form. It isn't something I can bite off, it is in the made capsules. This may be key, you are correct to note that Jova. It took a few days for them to make it for me.
Posted 12/11/2019 4:28 AM (GMT 0)

potsnpans said...
I'm taking the ADC version (Dizone). I really don't think it's an issue as it has been discussed often in the FB group... seems to be just the nature of the drug (when in the body of a patient with Lyme and co.) Maybe it's heightened sensitivity, or maybe that our bodies don't detox as well...


Wonder if it is some sort of correlation with having coinfections as well?

Trying to throw ideas out there.
Posted 12/11/2019 4:30 AM (GMT 0)
I just saw that this video was posted by the admin in the FB group. Haven't had the chance to view it yet myself but this might be the best person to listen to about DSF- Dr. Rajadas. It is the most current interview with him...

https://www.youtube.com/watch?v=i17ik9vvfk4&feature=youtu.be&fbclid=iwar3ybsnsqzsus9t85utcclttjdsjt4bvth0i-4aiwic2ptrqdmebecet3d4
Posted 12/11/2019 7:45 AM (GMT 0)
Cignet. Glad to see u back here. I agree that this will all be very different soon. Rajadas has changed the game and others are changing things greatly as well. I can feel the hopeful shift and the silence of those who would rather disappear than take the egg in the face.

Just need a hey y’all from RainyCloud but he might be really sick and not feeling this forum right now. I get that.
Posted 12/11/2019 1:34 PM (GMT 0)

Somebody said...
I honestly don't think it is the dosing issue necessarily. Plenty of people have gone in much higher with it and taken other meds at the same time with no problems at all.


When you "go in much higher..." you are taking a greater risk than when you start low and go slow. When you go low and slow you have a much better chance of noticing problems before they get really bad and can't be contained.

It is of particular importance here because of this drug's unusually long half life.

There has been one poster who has been popping in occasionally, saying what I just said above albeit in a more crass way, and then Jova, you have been dismissive of the message, as if it can't be true.

This message is of crucial importance and it needs to be recognized as true in this thread.
Posted 12/11/2019 2:18 PM (GMT 0)
When I was taking A-l complex I was taking way smaller doseage then recommended. Starting with a drop in a teapoon of water, and a drop of that. I never took more then 2 drops 3 times a week.

I still herxed a lot and would have had really severe problems if taking more. Cant it be the same with this?
That some is more sensitive and a "normal" dose kills to much?
Posted 12/11/2019 3:48 PM (GMT 0)
It is the same in that way for sure... for herxing, flaring, side effects, whatever effects the drug might have... and because of the unusually long half life, there is a cumulative effect when you are dosing daily, so that the full strength is not yet achieved until probably weeks after the initial dose.
Posted 12/11/2019 8:10 PM (GMT 0)
Edit: this post was in response to something Jova had posted just before it, which is now gone

You are right that we shouldn't let optimism cloud our judgement... but I just haven't heard anyone sounding at all dismissive of potential side effects here. Side effects are absolutely one of the reasons everyone is saying 'low and slow'.

Also, we shouldn't equate side effects with allergic reactions, which I'm sure are also a possibility with DSF.

Post Edited (potsnpans) : 12/11/2019 6:52:14 PM (GMT-7)

Posted 12/12/2019 5:47 AM (GMT 0)
I second potsnpans last post. Can’t recall all the previous arguing but that is a sensible post.
Posted 12/15/2019 2:59 AM (GMT 0)
Anecdotally has DSF been working well for people’s babesia symptoms. I’m on it now and can’t distinguish between any of the infections at all since it’s all in my head. My doc wants me to do mepron etc but I am very sensitive and doing fine on disulfiram. Don’t want to add anything else if DSF is working well for peoples babs symptoms.
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