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Disulfiram - Part 7

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Posted 11/12/2019 10:48 PM (GMT 0)
Disulfiram might not do anything specifically to biofilms, but my experience is that it kills borrelia, biofilm or not.
Posted 11/12/2019 10:57 PM (GMT 0)
The only thing they know at this point is that it destroys biofilm. It could be that your immune system is taking over and attacking the spirochetes now that they can't hide behind biofilm.
Posted 11/12/2019 11:12 PM (GMT 0)
I'm just reporting on what I've been reading on the disulfiram FB groups as well as the lastest from top LLMDs. Y'all do what you want with it. The solid consensus in the disulfiram groups with thousands of members is that antibiotics may need to be added to DSM.
Posted 11/12/2019 11:18 PM (GMT 0)

Natasha said...
I'm just reporting on what I've been reading on the disulfiram FB groups as well as the lastest from top LLMDs. Y'all do what you want with it. The solid consensus in the disulfiram groups with thousands of members is that antibiotics may need to be added to DSM.

In my opinion the top "LLMDs" are trying to get attention. I dont know how any of them can possibly say what is or isnt needed to be taken with DSF. There has not been one study done on patients. The study with 3 patients is hardly what would be considered a study. Most are forgetting just about everything they learned in junior high science class when it comes to making a conclusion. Its rather disheartening.
Posted 11/12/2019 11:22 PM (GMT 0)
I have a lot of respect for many of these LLMDs and what they are doing, including putting their licenses on the line. The ones who are saying this can say this because they are collectively treating hundreds of Lyme patients with disulfiram alone. I'm confident their scientific skills are sound.
Posted 11/12/2019 11:30 PM (GMT 0)
Yes, in vitro, but now we have a lot of live humans that are reporting in on their experiences. They are not "rabble rousers". They are real people with Lyme. I think there is a lot of hope to be had for disulfiram. It just doesn't look like it's going to be the magic bullet for everyone. It will probably end up as a cocktail of drugs much like how Horowitz is using it.
Posted 11/12/2019 11:31 PM (GMT 0)
And as far as the CDC, they would love for all of us to be cured and just go away. They'll just say it was the placebo effect lol. Those ******s.
Posted 11/12/2019 11:40 PM (GMT 0)
Yep the people at the CDS are sick, evil, ba$tards. I'm sure they send out rabble rousers and that they infiltrate various Lyme groups both on Facebook and elsewhere. I really want DSM to be the answer. I definitely think it's part of the answer and that we or rather the scientists are getting closer to finding THE magic bullet. It will happen.

Take care Cygnet
Posted 11/13/2019 1:17 AM (GMT 0)
LLMD MR (Seattle) wrote this on his treatlyme online book

“it is too early to tell if Antabuse (disulfiram) will work for a wide variety of people. Although Dr. Liegner has published promising results based on three patients in his practice, we need further studies to see if this will work in a wide variety of patients and clinical situations. I am pleased to see that Dr. Brian Fallon at Columbia University is planning a randomized clinical trial of 24 patients to document in a research setting if Antabuse works. For more information about his study see Disulfiram: A Test of Symptom Reduction Among Patients With Previously Treated Lyme “


Only 3 people so far?

... or are there lots more claiming remission online?

What about forum members here - has anyone achieved remission?
Anyone been on for more than 3 months?
Posted 11/13/2019 2:15 AM (GMT 0)
There have been I'd say around 6-8 on fb claiming complete remission in the past 6 weeks that I have followed. Many more with significant improvements. Dr Liegner showed numerous patients achieving remission in his last presentation at a conference.

I've been treating 4 weeks. I had to stop for a week and just restarted.
Posted 11/13/2019 2:44 AM (GMT 0)

skinny_joe said...
There have been I'd say around 6-8 on fb claiming complete remission in the past 6 weeks that I have followed. Many more with significant improvements. Dr Liegner showed numerous patients achieving remission in his last presentation at a conference.

I've been treating 4 weeks. I had to stop for a week and just restarted.

Oh I see - so it’s perhaps too soon to know yet if the 6-8 stay in remission.
How much have you improved skinnyjoe?
Posted 11/13/2019 2:51 AM (GMT 0)
hey everyone, cheers. we're all going to get better and cured.
week 6 125mg second attempt
thursday -> going to 250mg
job situation: they are about to fire me, but I don't care. lol
Posted 11/13/2019 11:41 AM (GMT 0)

Girlie said...

skinny_joe said...
There have been I'd say around 6-8 on fb claiming complete remission in the past 6 weeks that I have followed. Many more with significant improvements. Dr Liegner showed numerous patients achieving remission in his last presentation at a conference.

I've been treating 4 weeks. I had to stop for a week and just restarted.

Oh I see - so it’s perhaps too soon to know yet if the 6-8 stay in remission.
How much have you improved skinnyjoe?

I dont know. I may have seen some help. I had a bedridden stomach bug that knocked me down for about a week that was why I had to stop. Its hard to tell with that.
Posted 11/13/2019 5:28 PM (GMT 0)

Somebody said...
The solid consensus in the disulfiram groups with thousands of members is that antibiotics may need to be added to DSM


I am in the FB groups and I do not see a solid consensus about this at all. I think the post Natasha was referring to was from someone new to the group who said her doctor told her that a "top LLMD" told him etc...
Posted 11/14/2019 12:44 AM (GMT 0)

JovaLyme said...

There really is no way of knowing what it actually does.

I know exactly how Disulfiram works. Actually, just kidding I have no idea. How are you doing Jova?? Hanging in there?
Posted 11/14/2019 12:51 AM (GMT 0)
So do we have a list of all the different forms of disulfiram that are available? I'm getting confused with the capsules, separate enteric-coated containers, effervescent, time release, lipsomal, transdermal, and whatever other way people have come up with as a delivery for this med. I'm assuming people have proposed theories on why some are better than others as far as bypassing the stomach xcetera thanks
Posted 11/14/2019 4:29 AM (GMT 0)
My only problem with Dr’s llmd etc like them saying you need to add a abx, is this they all apply for patents and I do think it is wrong for a dr to corner a market or therapy this is what is wrong with medicine. The Stamford dr’s all applied and received patents for the drug combos. Why because they get money that’s why. Here is why it is bad, greed makes studies end up working so they get approved and on humans it does not. So maybe we should say yes you can have the patent but if there is mass lawsuits your going to be sued too. Listening to dr Rajadas on the DS was great until he said about those patents they applied for on the combos. They are not looking out for the sick only their wallets if all they care about it patents. Find the cures and treat the people and your reward is famous for healing people it does not happen no more they all want to issue their papers and studies on how to treat people. But are they truly holding up to the hypocritical oath?. The doctors should not be granted patents or maybe I should say medicines should not be patentable it is for the betterment of mankind....."
Posted 11/14/2019 4:38 AM (GMT 0)
Funny too that both studies so far from Loratidine and dsf both came from Stamford.........get my point here. Both work same way but they gave up on the loratidine I guess......my llmd prescribes 30mgs of it in his protocols and he does dsf too. He staying on top of things. I have some breaking news to share tomorrow. Or real soon I do not want to jinx it yet........
Posted 11/14/2019 5:21 PM (GMT 0)
Jova,

is there anyway you could try a good high quality Turmeric? I take 6 tablespoons a day, split in the morning and night -- and it is a game changer. I take 1/4 tea spoon of store bought black pepper and 2 large fish oil pills. The black pepper and oil is suppose to increase the bio-absorption rate of the Turmeric.
Also I have concluded that most "Curcumin" turmeric is fake. Except for one or two very expensive ones ($60-80 USD for 30-45 pills..)

The one I buy is Starwest Botanicals out of california near me. They have it on amazon and a website. Its relatively cheap. about $11 for 1lb of Turmeric, which lasts 3-4 weeks. It is not the extract. But I have bought a lot of brands and this one has been the most effective per $.

Not sure if it is available in UK, but I'd imagine there'd be better high quality versions at ethnic stores.
Posted 11/14/2019 6:03 PM (GMT 0)
Any increase in burning/tingling, or new instances of it, could be the neuropathy side effect which has so often been warned about. I wouldn't try to push through that especially without guidance from a doctor. Maybe continue with your plan by stopping treatment and then reintroducing enteric form if neuropathy symptoms subside...
Posted 11/14/2019 7:04 PM (GMT 0)
Id strongly suggest taking 63mg every third day or once a week and going from there. Folks are in way to big a hurry to build up dosing and then crash.
Posted 11/14/2019 10:16 PM (GMT 0)
Hey guys, first time poster, long time lurker.

Contracted Lyme/Bart/Mycoplasma five years ago, got a diagnosis and began treating six months after initial symptoms presented. Super severe case.

Done many abx combos over the last four years (without real breaks), but just began DSFM just less than 30 days ago. Previous treatment got me to about 75/80% (fully functioning human again), but I haven’t been able to eradicate these bugs completely.

Have been on a combo of doxy/mino/rifampin/plaquenil for the last several months, and decided to throw DSFM on top of that based on the promising stories. Started at 250 mg per day and have taken that dose consistently for the last 25 days, without too much issue.

Until today, that is.

Took my pills at 8 am, and by 11 I legitimately worried I was dying. Lightheadedness, air hunger, crazy fatigue/malaise. For the first time since initially becoming an ill, I was so concerned about my health that I went to the ER. By the time I arrived at the ER I was already feeling significantly less awful, but I stayed to make sure nothing was seriously wrong. The doctors don’t know crap about Lyme, of course, but they were at least able to confirm that I wasn’t in the processing of immediately dying (which it felt like). It’s been a couple hours since I left and I’m feeling much better.

Pretty certain I just experienced my first real Herx on DSFM, and it was unreal. I’ve previously taken azithromycin, tinidazol, Bactrim, and other potent abx in combination, but none of those experiences held a candle to this morning.

I’m gonna be taking at least a couple days off the drugs to give my body some time to “heal”, but I think I’ll continue this current regiment once I’ve had a breather. I’ve been skeptical since I started DSFM, but today’s Herx gives me reason to believe that this drug is doing things that no previous medication I’ve tried before has. I will continue to post updates to this forum and try to answer any questions people may have.

TL/DR: started taking DSFM almost a month ago, wasn’t sure if it was doing anything, had the most terrifying Herx of my life a few hours ago
Posted 11/14/2019 10:38 PM (GMT 0)

UnsightlyCignet🌠 said...

JovaLyme said...
I am beginning to think the bad symptoms I've been getting on it are the neuropathy that people have mentioned.

It was one of my biggest worries about disulfiram. I already feel a reduction in that from just missing today's dose. In other ways I think it has actually helped, but the pain it is causing now is very bad.

Now I'm just focusing on bartonella, which I think most of my symptoms are down to.

I feel for you. It can be very difficult to stay positive with all the grief this brings. As I said, get some capsules and the side effects are lesser, if you want to continue. If the neuropathy persists, there's the herbs mentioned too.

This is all backed up in a book on the subject.

Here's a useful link as well. This woman has been using it for 2 months, with generally positive results.
KIM and ROSS: 2ND STEP TO STARTING DISULFIRAM / ANTABUSE FOR LYME + 2 MONTH UPDATE
https://www.youtube.com/watch?v=1ueqdztk6a8

Also mention again, of the capsuling route to reduce side effects in the comments.

======================================================================
I watched the video. She started with 200 mg every 3 days for a month. Then went to 200 mg every other day...and then everyday 200 mg.....and has now backed down to every other day.

Isn't that a really high dose?
Posted 11/14/2019 10:52 PM (GMT 0)
"From what I've read it's close to it. 500mg is a high dose. Also she's tried many other different means and documented her journey which is really quite interesting. "


I've just seen so many posts of 62.5 and 125 mg.....for weeks/months... or is that not the norm?

Do we have anyone posting that's on 500 mg? Sebreg's been on it awhile...but I can't remember his dose. Maybe he's at that now?

Yes, she is a 'wee' woman. She mentioned explaining about the hotel room...but then didn't...or I missed it somehow? LOL.
Posted 11/14/2019 11:57 PM (GMT 0)
I bought some enteric capsules I'm not totally confident they would dissolve in my intestines I have not tried them yet. I know they are supposed too but.. I wish we knew the mode of action. Right now my schedule is 125,62,125,62 etc. On a positive note my back feels the best it has in almost two years my muscles just feel sore like over exertion sore not the nauseating stiffness I used to have. My muscle pain in my legs has diminished as well. Either the LDN or DSF is making a difference I started both at the same time. Im about 6 weeks in.
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