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Disulfiram - Part 12

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Posted 12/6/2019 7:07 PM (GMT 0)
Part 1:
https://www.healingwell.com/community/default.aspx?f=30&m=4143796

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

Part 3:
https://www.healingwell.com/community/default.aspx?f=30&m=4154973

Part 4:
https://www.healingwell.com/community/default.aspx?f=30&m=4156966

Part 5:
https://www.healingwell.com/community/default.aspx?f=30&m=4158858

Part 6:
https://www.healingwell.com/community/default.aspx?f=30&m=4160694

Part 7:
https://www.healingwell.com/community/default.aspx?f=30&m=4163428

Part 8:

https://www.healingwell.com/community/default.aspx?f=30&m=4164806

Part 9:

https://www.healingwell.com/community/default.aspx?f=30&m=4166267

Part 10:

https://www.healingwell.com/community/default.aspx?f=30&m=4167622

Part 11:

https://www.healingwell.com/community/default.aspx?f=30&m=4168545
Posted 12/8/2019 12:41 AM (GMT 0)
Rainycloud any updates?

U might be laid out feeling the world is black right now but update us when you can function a little.

Post Edited (Onlynamenottaken) : 12/7/2019 5:45:52 PM (GMT-7)

Posted 12/8/2019 12:55 AM (GMT 0)

201000cb said...
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.

I got abdominal pain, bloating, and diarrhea from bartonella. The herx seems to release some toxin that ends up in the bile. It also made my pee smell. It can be hard to distinguish the smell of bartonella from the smell of disulfiram, but I've gotten smelly pee from bartonella with other antibiotics.
Posted 12/8/2019 1:06 AM (GMT 0)
DSF pee smells like sauerkraut imo
Posted 12/8/2019 7:56 AM (GMT 0)
Jesus RainyCloud. Time to take a few days off the meds. Just lie on the couch and watch the Star Wars series again and don’t answer the phone. Just go for walks to get milk and cereal. The silver linings slowly come back and then u start to feel good and everything else seems good too.😎
Posted 12/8/2019 5:14 PM (GMT 0)

🔹RainyCloud said...
i went to the ER today

Hoping you are getting some relief now - please update us when you’re able.
You’re in our thoughts.
Posted 12/8/2019 6:04 PM (GMT 0)
I don't like how every week we have a new Part X, because new people come in here, learn about the drug, immediately rush to take 500mg and then end up in the ER. It makes it difficult for people like me to continue to use the site and help people BECAUSE I am doing very well and after 3 months I'm still at 250mg and I am NOT going to the ER or having any problems. Then I have to deal with very negative thoughts. It seems like everytime I bring it up somebody immediately creates a new thread and it defeats the purpose.
Posted 12/8/2019 6:39 PM (GMT 0)

oregonhay said...
I don't like how every week we have a new Part X, because new people come in here, learn about the drug, immediately rush to take 500mg and then end up in the ER. It makes it difficult for people like me to continue to use the site and help people BECAUSE I am doing very well and after 3 months I'm still at 250mg and I am NOT going to the ER or having any problems. Then I have to deal with very negative thoughts. It seems like everytime I bring it up somebody immediately creates a new thread and it defeats the purpose.

oregonhay - you're not liking the different threads created ie Part 2, Part 3...etc?

When I became Mod, I was instructed that the threads could only be 'so long' (I think one reason was it was hard on the servers - not sure if that's true...not knowledgeable on that)....
Posted 12/8/2019 9:00 PM (GMT 0)
I don't know

people are getting hurt

do something, how about ban anyone who takes or talks free able taking over 500mg? Except me of course because its been 3 months and coincidentally I'm scheduled to get to 500mg in a few weeks.

lets do a reality check

Basically everyone who jacked up their dosage to 500mg in a short period of time has caused self harm Yes or No
Posted 12/8/2019 10:15 PM (GMT 0)

JovaLyme said...
All the evidence from this forum says that disulfiram is quite high risk for some of us and that it also isn't effective as a monotherapy.


It can be quite effective as a monotherapy, and I would argue that if you are self treating, it MUST be done as a monotherapy along with all of the other good advice that has been given (low and slow, routine blood work, etc).

When there are already so many unknowns, we shouldn't be adding extra variables.
Posted 12/8/2019 10:17 PM (GMT 0)
“ I have to agree with Oregonhay, Girlie.“

I’ve just quickly read the posts - what are you proposing?

That only positives are posted on the Disulfuram thread?
Or?
Posted 12/8/2019 11:19 PM (GMT 0)
The folks who have had bad reactions on this forum went to fast plain and simple. They were warned repeatedly and continued their reckless paths. They then come back and argue the drug is not safe. I've been on the fb page for three months about every 3-5 days someone posts a dramatic success story. about every week someone is in rough shape because they ramped up to 250mg and then quit the drug. I've seen good improvements I've been on it for 70ish days I just started 125mg daily.

I've really tried to stay quiet on this but folks on this drug ramp up too fast and become a train wreck and its everyone else's fault.
Posted 12/9/2019 12:19 AM (GMT 0)
If you got neuropathy at 62mg why did you keep taking it?

Good luck dude I'm done here..
Posted 12/9/2019 12:25 AM (GMT 0)

oregonhay said...
I don't know

people are getting hurt

do something, how about ban anyone who takes or talks free able taking over 500mg? Except me of course because its been 3 months and coincidentally I'm scheduled to get to 500mg in a few weeks.

lets do a reality check

Basically everyone who jacked up their dosage to 500mg in a short period of time has caused self harm Yes or No


You’re doing well after two months.

That’s awesome.

What symptoms have died down?
Posted 12/9/2019 12:29 AM (GMT 0)
No one will be banned because they reacted adversely to a certain dose of Disulfuram


I almost went to the ER once when I herxed badly on the persisters protocol.
It happens with other lyme and co treatments too.
Posted 12/9/2019 12:36 AM (GMT 0)
A disclaimer wouldn't be a bad thing, but I agree with what skinny Joe said about the unheeded warnings.

Jova said...
Do you know something about disulfiram that others don't?


He knows what everyone else here knows and he apparently has the appropriate discipline to put it in to practice.
Posted 12/9/2019 12:40 AM (GMT 0)
Dr L and Dr K are only allowing their patients to increase dose when they believe they are through herxing.
Posted 12/9/2019 1:39 AM (GMT 0)
Alright everyone let’s just take a breather and calm down.

We’re all friends here.

We need to understand not everything will work for everyone as everyone bodies are different or certain side effects will be more prevalent for some and not for others.

Jova, please don’t leave, I know DSF hasn’t work well for you, I’m sorry for that, but there’s other things that could.
Posted 12/9/2019 1:43 AM (GMT 0)
For me, it’s weird, I was great a couple of days ago, felt almost like myself, and then I think I used shaving cream and my deodorant a bit too much and today having the itching and internal discomfort. Gotta be really careful on DSF, sigh.

Gonna stick at 125 (62.5 split up morning and night) for another week and then up to 190 for another couple weeks.

I think gonna stay at 250 and just lay there.

I do know that my baseline when I was off was a lot better but I don’t want a lot better, I want it completely out of my system.

I just hate the bad days. Just makes you feel like you’re never getting anywhere.
Posted 12/9/2019 2:32 AM (GMT 0)

Jova said...
Unheeded warnings?

I took 62.5mg a day mostly and ended up at 125mg after 4 weeks.

I have been following these threads pretty regularly and I had to go back and check on this just to make sure I wasn't completely misremembering you're posts. Im sorry if you feel like you're being picked on, but truth and honesty are very important when so many of us are navigating through our own treatments.

Somewhere in part 5 of this thread you started on DSF... the night of 10/22. On 10/31 you posted this:

Jova said...
I am taking a few drops of methylene blue with DSF and am up to 250mg of DSF as of today. I am tolerating it pretty well now and detoxing furiously. I don't actually know what the dose of methylene blue is supposed to be and can't find that information anywhere.

Posted 12/9/2019 2:35 AM (GMT 0)
It could be that certain people went too fast and if they reset could have good outcomes but putting them down for that isn’t the answer. We’re all suffering or have suffered.

I was slow and steady, took time off, went heavy, had to take time off an back to slow and steady.

I’ve learned myself and yes I still have bad days, whether it be from herxing or my dumb dumb self not being careful with alcoholic products (seriously they can be found in anything).

We’ve all been through some form of hell, so guys let’s not put anyone down. If others stories are scaring you or bringing you down, start another thread maybe named positive outcomes from disulfarim or separate yourself. Not everyone is going to strike gold. People on 62.5 like Jova are having heavy herxing so it’s unfair to say hey, you’re doing it wrong.

I know, we’re all frustrated. I was balling the other day because of self pity. It’s been so long and my life was amazing prior to this. Seeing all my friends moving forward with their life it just takes a lot out of you. But we are in this together. God bless you all.
Posted 12/9/2019 3:11 AM (GMT 0)
I have nothing but compassion for Rainy. Truly hope he is able to come out of this and come out quickly.

I just don't want anyone to be misled. When you say DSF is not effective as a monotherapy, that's misleading.

The way you have recently been describing your experience with DSF has also been very misleading. It apparently took you 9 days to claim you were at 250 mg daily, and also throwing in methylene blue.

I don't want people who are reading through these threads more casually than I am, to be misled
Posted 12/9/2019 3:45 AM (GMT 0)

Jova said...
Disulfiram has NOT been successful as a monotherapy for several people on this forum...


This is a true statement

Jova said...
All the evidence from this forum says that disulfiram is quite high risk for some of us and that it also isn't effective as a monotherapy.


The second part of this statement is not true
Posted 12/9/2019 4:10 AM (GMT 0)
I think if you're on one form of treatment, then it would be considered a monotherapy regardless of past treatments.

Just to be clear I'm not a stakeholder... Just taking the drug, doing well, and hoping for continued success. One of the best things we can do to support each other is to be as transparent as possible, and to check egos at the door.
Posted 12/9/2019 4:28 AM (GMT 0)

potsnpans said...
I think if you're on one form of treatment, then it would be considered a monotherapy regardless of past treatments.

Just to be clear I'm not a stakeholder... Just taking the drug, doing well, and hoping for continued success. One of the best things we can do to support each other is to be as transparent as possible, and to check egos at the door.


Hi pots! How’s it going?

May I ask how much you’re taking and which symptoms have died down. Very happy for you.

I fd up as you’ve seen but went back to starting slow. Sucks but hey gotta make mistakes and fix them. Back on 125 split into two and seen some good results (ate a bite of rum cupcake and spit it out yesterday not knowing until I took the bite, seriously alcohol made me feel awful today), the other day felt almost no symptoms.
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