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Posted 5/21/2018 6:38 PM (GMT 0)

ToddPaul said...
I don't get it. Disulfiram isn't considered a sulfa drug.

I’m guessing the paper is on dapsone. I had asked about research and if she had any news about disulfiram. Guess not. I think it’s mostly Lewis doing work on disulfiram. I posted here bc we were talking about persister drugs.

Post Edited (k07) : 5/21/2018 12:41:03 PM (GMT-6)

Posted 5/21/2018 8:07 PM (GMT 0)

k07 said...

Just finished the semester and I will spend the summer on manuscripts including one on sulfa drugs.

disulfiram is not a sulfa drug. Sulfa drugs are sulfonamides, that contain sulfonamide functional group: -S(=O)2-NH2.


So sulfur with two atoms of oxygen and S-N links. Disulfiram has sulfur but not the sulfonamide group so it's not a sulfa drug...

Im not sure sapi can test this properly. I do not have much trust in the way her team produce persisters, she should team up with Zhang. Actually im half way convinced even by Kim Lewis' team. Zhang has a lot of experience with persisters from TB, so he knows quite well how to produce them and test stuff on them. Many things that work in Sapi's and Lewis' lab tend not to work in Zhang's.

This includes
- pulsing ceftriaxone - K. Lewis says it works, Zhang says it does not
aac.asm.org/content/early/2015/05/20/AAC.00864-15.abstract
/www.ncbi.nlm.nih.gov/pmc/articles/PMC5095124/

- Mitomycin C anticancer drug is said to sterilize borrelia persisters per Kim Lewis' study. Zhang says it does not work
aac.asm.org/content/early/2015/05/20/AAC.00864-15.abstract
/www.ncbi.nlm.nih.gov/pubmed/26903956

- Eva Sapi says Tinidazole is "da bomb", even against biofilms. Zhang says it is quite weak
/www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/
/www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/

On the other hand maybe we do not really need to sterilize in vitro borrelia, maybe if we get up to 95% death, it's over.... dunno ...
Posted 5/24/2018 2:28 AM (GMT 0)
i see Dr. J in DC and i've been on dapsone and daraprim one week per month for almost 3 months. also pulsing a bunch of other crap like rifabutin, mino, bactrim.

this is Dr. J's persister protocol. Dr. J told me personally that Dr. H gets all the publicity for the persister drugs but it was in fact his original idea. Dr. J is a humble guy so I tend to believe him but i thought that was funny.

can't say my main issue (nerves) is all that better but 3 months in its a bit early to tell.

i did treat babesia for a year and Dr. J was surprised it took so long. i asked him why he said you treated it in the past twice but never finished the job so it's built up some resistance and just takes longer. interesting.
Posted 9/9/2018 9:51 PM (GMT 0)
So more members who have had good results with the Disulfiram? I do agree with the way the different laboratories induce persisters.

Zhang has the best method as far as my very limited knowledge of microbiology can tell.

Zhang has said Disulfiram was rather weak in a video which is no longer available online. Lewis is not referring to the drug in public but a lecture in a university ended up online.

When Lewis determines the drug effect he doesn't take into calculation biofilms. His rationale is: the drugs must freely diffuse into the biofilm because food does too and the molecular size of nutrients and antibiotics do not differ much.

He says the reason for biofilm persistence is only persister cells. Zhang and Sapi have a different approach to that rationale. Herbert Allen's hypothesis with regards to spirochetes causing dementia is also different.

Allen suggests the spirochetes reach a certain amount in the colony and trough quorum sensing roll out a biofilm. Because the immune system does not reach the bacteria due to the biofilm they damage the surrounding tissue.

He also suggests biofilm prevent penicillins from working and thinks drugs like rifampin are needed to punch holes in the biofilm.

Zhangs oral combination is based on this idea:

Doxy/mino : kills exponentially growing forms.
Rifampin: kills stationary forms / punches holes in the biofilm.
Dapsone: affect biofilm and kill the most resistant persisters.

I have not seen publications about how disulfiram works or the publications in mice. I have also not seen published results from lab studies.

This makes me wonder if Lewis found disulfiram kills the exponentially and stationary forms but not took into consideration matured and aggregated biofilm-like forms.

The farmacological properties of disulfiram are very promising with regards to tissue penetration, half life bioavailability and cns penetration.

However, Bartonella could still be an overlooked infection, which can cause many subjective symptoms mainly due to endothelial inflammation and small vessel disease.

It is very hard to kill because most antibiotics are only bacteriostatic and it is intracellular and can survive in erythrocytes, endothelial cells, progenitor cells, marcophages, neurons and glial cells. It can also interact with B cells and functions somewhat as a polyclonal B cell stimulator.

mino/rifamp will help with that infection but I am really interested in knowing which drug combinations are able to kill Bartonella.

Also, the concentrations reached in the body are of concern, the concentrations reached inside cells is even more difficult to predict. Also, in which compartment of the cell the Bartonella survive and if the drug can reach that...

Zhang is also the mastermind in fighting Tuberculosis and finding new strategies so intracellular infections are his specialty. However, with Bartonella you have another problem, wild strains are very difficult to culture.

With the Houston-1 strain this is much easier but that doesn't correctly reflect what happens in natural infection.

Either way, exciting developments. I cried a little bit because eventually people will no longer have to suffer these diseases we have all gone trough.
Posted 9/9/2018 11:49 PM (GMT 0)
I am on my llmd’s persister protocol now -

Dapsone (only 50mg) plus Daraprim along with Rifabutin and Ceftin for a week

Another week of the cycle I take other abx

During the following two weeks I take Alinia for 5 days on its own.


I think Dr J prescribes something similar to this for most patients after they’ve done a good run on Babesia treatment.

I also take Cryptolepis and Enula for some days.

.. And xylitol/lactoferin for biofilms plus Flagyl for cysts. (Pulsed)

Have almost completed the first cycle.
Week one was harsh - and didn’t even take the daraprim the full 5 days because it had to be compounded and arrived late.
Posted 2/24/2019 11:59 PM (GMT 0)
hi Charlie 55, i am on disulfarim now and I know many others now on this treatment. I'd love to exchange more info experience if you are interested. I was in remission when I started. Why start then? Well, I had undiagnosed late stage Lyme for many years—I don't take my remission for granted and wanted to see if disulfarim might be a viable future therapy. Guess what. I've been herxng, Happy to be herxing because this means disulfarim may be VERY effective
Posted 2/26/2019 12:28 AM (GMT 0)
Our doctor has between 10-20 patients who have benefited from treatment with disulfiram. He is quite aggressive in his treatment, more so than I've seen on anyone in this thread. I am unable to find a history of use with any teenager at any dose. My kid has been chronically ill since 12/17 (Western Blot positive for Lyme after known tick bite/ no rash) and almost totally bedridden since then. 3/18 Positive for Babesiosis and Bartonella. Initially treated with Doxycyline (12/17-1/18), then Amox (875 mg 12 tabs/day) & Mepron (3/18-6/18), then Ceftraxione 2g IV & Mepron (7/18-8/18 , 3 weeks off and again 10/18-12/18). Biliary attack resulting in gallstones (avoided removal, still waiting for them to hopefully disappear)- off all meds since 12/5/18 due to elevated liver numbers, etc. Now doctor would like to try disulfiram 500 mg. /day for 6 weeks.
Trying to complete sr. year of high school (online schooling) to graduate.
For those of you who have used/ are using disulfiram- is this too much? Can you function while on treatment? Any complications with liver in your experience?
Separate neuro has recommended IVig due to autonomic dysfunction/ neuropathy.
Any input greatly appreciated.
Posted 2/26/2019 2:08 AM (GMT 0)
Hi healingher - welcome !

“Initially treated with Doxycyline (12/17-1/18), then Amox (875 mg 12 tabs/day) & Mepron (3/18-6/18), then Ceftraxione 2g IV & Mepron (7/18-8/18 , 3 weeks off and again 10/18-12/18). “

You mentioned the LLMD treats aggressively?
Is that 10,000 mg of amoxy daily (875x12)
Not heard of that high amount before. Was it tolerated?

Was your child on Ursidiol for the gallbladder protection while on the IV abx?

Is the LLMD going to try Rifabutin for bart at some point?
Posted 2/26/2019 4:13 AM (GMT 0)
You mentioned the LLMD treats aggressively?
Is that 10,000 mg of amoxy daily (875x12)

Yes- high dose built slowly (over 10-14 days without looking at my notes) to cross blood/brain barrier and maintain blood saturation.


Was your child on Ursidiol for the gallbladder protection while on the IV abx?

No- Ultrasounds every 2 weeks to monitor for sludge- but sludge was missed, the attack happened and almost 3 months later, stones still have not dissolved on their own. Dr. says any other patient on IV ceftriaxone in his care that developed sludge was able to stop before stones developed and none of his patients in 30-40 years had a biliary attack as result of ceftriaxone treatment.....

Is the LLMD going to try Rifabutin for bart at some point?
Tried to address Bart last August 8/18 but made too sick so have yet to address Bartonella...
Posted 5/16/2019 2:28 AM (GMT 0)
I’ve been treating “crhonic lyme/ PTLDS” for many years. I’ve been into remission several times only to relapse.

Currently on Disulfiram to test out this new “wonder drug” its been about three weeks and I have experienced some serious symptoms which at this stage of my health I really cant put down to herx symptoms like i used to do. I’m unsure if im herxing on disulfiram or its just my “microbiome”.

Im going to continue Disulfiram for another 5 weeks to make it to Two months and see if symptoms reside before I give my final opinion on its efficacy.

hopefully it works like the stuides claim.
Posted 5/16/2019 8:40 PM (GMT 0)

in remission said...
hi Charlie 55, i am on disulfarim now and I know many others now on this treatment. I'd love to exchange more info experience if you are interested. I was in remission when I started. Why start then? Well, I had undiagnosed late stage Lyme for many years—I don't take my remission for granted and wanted to see if disulfarim might be a viable future therapy. Guess what. I've been herxng, Happy to be herxing because this means disulfarim may be VERY effective

Great to see this post still going, you can hit me up on FB if youd like or through my profile email on this forum.
https://www.facebook.com/charlie.fitzgerald.737

healingher said...
Our doctor has between 10-20 patients who have benefited from treatment with disulfiram.

That is so great to hear!!!

healingher said...
He is quite aggressive in his treatment, more so than I've seen on anyone in this thread. I am unable to find a history of use with any teenager at any dose. My kid has been chronically ill since 12/17 (Western Blot positive for Lyme after known tick bite/ no rash) and almost totally bedridden since then. 3/18 Positive for Babesiosis and Bartonella. Initially treated with Doxycyline (12/17-1/18), then Amox (875 mg 12 tabs/day) & Mepron (3/18-6/18), then Ceftraxione 2g IV & Mepron (7/18-8/18 , 3 weeks off and again 10/18-12/18). Biliary attack resulting in gallstones (avoided removal, still waiting for them to hopefully disappear)- off all meds since 12/5/18 due to elevated liver numbers, etc. Now doctor would like to try disulfiram 500 mg. /day for 6 weeks.
Trying to complete sr. year of high school (online schooling) to graduate.

I have found that aggressive treatment is a lot more effective!

healingher said...
For those of you who have used/ are using disulfiram- is this too much? Can you function while on treatment? Any complications with liver in your experience?

Disulfiram has a really long half life, so just using one pill a day can go a really long way I think. There's really no standard dosage for lyme since this is such a new drug to use for lyme disease. I did 250mg a day and was herxing quite a bit, when I upped it to 500mg, became too much to tolerate and function normally, but I'm sure it effectively killed a lot of borrelia and possible coinfections. I'd just keep it to 250mg a day and even then, as it builds up in your system, maybe doing 250mg every other day or every three days.

And yes, I've noticed for me it became very hard to tolerate this drug after a month of use, it would induce more fatigue for me.

I have Babesia as well, so I needed to switch my treatment over to some antiparasitic drugs.

I have heard it can be mildly hard on the liver in the long run, but I was fine afterwards.

healingher said...

Separate neuro has recommended IVig due to autonomic dysfunction/ neuropathy.
Any input greatly appreciated.

There's other oral antibiotics that can hit neruo lyme effectively like dapsone, minocycline, etc... However, if you have the money I'd do IVs

Gabzz said...

Currently on Disulfiram to test out this new “wonder drug” its been about three weeks and I have experienced some serious symptoms which at this stage of my health I really cant put down to herx symptoms like i used to do. I’m unsure if im herxing on disulfiram or its just my “microbiome”.

What are your symptoms? Because I had some really weird symptoms while being on this drug as well. I suspect it wakes up a lot of dormant persister cells, just like it's found to do with AIDs patients, so be aware that some really strange symptoms might come out while being on this drug.

I had a lot of neurological symptoms, twitching and pinching in my brain, as someone described with neuro symptoms, felt like rocks and stones were moving around in my brain. Remember disulfiram effectively crosses the blood brain barrier... I suspect it caused a lot of neurological herxing when I was on the drug.

Post Edited (Charlie55) : 5/16/2019 2:45:19 PM (GMT-6)

Posted 6/2/2019 5:55 AM (GMT 0)
New update on this drug if anyone is subscribed to this thread and gets emails/notifications, check out this new post https://www.healingwell.com/community/default.aspx?f=30&m=4129850

New study https://www.mdpi.com/2079-6382/8/2/72

Sheekster said...


Looks promising. Study is about 3 patients using disulfiram as a single agent after "failing" multiple conventional antibiotic regimens for lyme and babesia. 2 patients achieve a complete and long lasting remission, while 1 is currently taking a second round of disulfiram due to relapsing (He used a lower dose than the other 2 patients).

Posted 6/2/2019 6:15 AM (GMT 0)
Thanks for posting this. I told u guys this is a drug worth watching because it may fix some chronic cases

https://www.healingwell.com/community/default.aspx?f=30&m=3743568

has all the necessary features: long half life, systemic/brain absorption, FDA approved, not an antibiotic
Posted 6/2/2019 7:23 AM (GMT 0)
Happy time mpost, maybe I'll do a happy dance in a little bit. : ) I love hearing good news like this in the Lyme Community, honestly I think this more than good news, even the word "great" may not even be able to sum it up!

It sure lifted my spirits today!!! So grateful Sheekster posted it!

I have a good outlook on what's to come in the future with lyme, just hope it's soon, as I know many chronic lyme patients need help pronto.
Posted 6/2/2019 2:46 PM (GMT 0)
Anyone know if Dr. H or J are using this? Anyone outside of Leigner? Seems quite promising for Lyme itself, hope we can find drug/combinations for Babesia and Bartonella as well. Since chronically sick people have all three at least it seems.
Posted 6/2/2019 3:08 PM (GMT 0)

Chiledog said...
Anyone know if Dr. H or J are using this? Anyone outside of Leigner? Seems quite promising for Lyme itself, hope we can find drug/combinations for Babesia and Bartonella as well. Since chronically sick people have all three at least it seems.

I see Dr J and he’s not mentioned it - and I don’t know of any patients that are taking it.
Posted 6/2/2019 3:19 PM (GMT 0)

Girlie said...

I see Dr J and he’s not mentioned it - and I don’t know of any patients that are taking it.

There is an ongoing clinical trial. Ill keep on tracking their progress
https://clinicaltrials.gov/ct2/show/nct03891667
Posted 6/14/2019 1:59 AM (GMT 0)
In remission, Any updates?

Gabzz, How about u?

Really interested in this. I am feeling hope.
Posted 6/14/2019 4:49 AM (GMT 0)
Just read an article on Disulfiram and Lyme where the author states his theory on how it kills the spirochete. Either it chelates minerals including manganese which we know Borrelia needs to survive or the Antabuse inhibits the manganese superoxide di****ase enzyme which is unique to Borrelia and a few other bacterium. This enzyme prevents reactive oxygen species formed from Borrelia's metabolism from killing the spirochete so if you inhibit it then it will die.

He also says that there's a lag time of at least 5 days to build up so the herx really sneaks up on you. Many people move up the dosage too quickly and end up in a really bad place and have to stop for a bit.
Posted 6/15/2019 12:24 AM (GMT 0)
Is disulfiram supposed to be used as a single agent? That is all I have seen people do and that is what the study said. Wonder if anyone tried combining it or pulsing with another agent in close proximity to disulfiram.
Posted 6/15/2019 12:35 AM (GMT 0)
Disulfiram as a single agent was found to be effective against borrelia and babesia. There are no studies that I know of its effectiveness against bartonella. I haven't taken disulfiram, but I found that many antibiotics that worked against borrelia were ineffective against bartonella, so I'd be cautious.
Posted 6/15/2019 4:13 AM (GMT 0)

Quin said...
Disulfiram as a single agent was found to be effective against borrelia and babesia. There are no studies that I know of its effectiveness against bartonella. I haven't taken disulfiram, but I found that many antibiotics that worked against borrelia were ineffective against bartonella, so I'd be cautious.

if you read about bart, you will see it is a problem to immunocompromised individuals: bad nutrition (homeless), bad genes, HIV, other infection etc.

lyme causes a type of immune defficiency. you remove all borrelia from a person, then that person's immume system bounces back up and puts to respect all opportunistic pathogens.

it is very similar to hiv in this respect.

problem is doctors have no idea how to effectively kill borrelia. so they must treat the opportunists as well.

the promise of compounds like disulfiram is they are so effective against borrelia that you may not need something else in order to recover. maybe some vitamins, antioxidants, etc. but as primary treatment, it could be enough on its own
Posted 9/21/2019 2:37 AM (GMT 0)
I’ve just discovered this forum. I’ve been on Disulfiram for about five weeks. My herxes come and go. I’m on a 500mg dose. But after 5 weeks I do feel like it’s working. I had a few days last week where I felt the best I’ve felt in months. I discovered I had Lyme 3 years ago. Fought it with oral antibiotics for 1.5 years. Went off antibiotics for a 1.5 years then slowly got sick again. Started oral antibiotics again until I read about disulfiram. I’m hoping this is the ticket. Reading this post has me thinking positive results are in the future. But darn these herxes suck!
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