posted
My doctor said patients who have used this have been cured. Does anyone have any experience with this?
Posts: 95 | From new york | Registered: Jan 2012
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posted
It sounds like everything else. Not enough people yet to really make a decision. Thanks.
Posts: 95 | From new york | Registered: Jan 2012
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quote:Originally posted by mariel21: It sounds like everything else. Not enough people yet to really make a decision. Thanks.
I would respectfully disagree with you. Did you read the article and the part about the Stanford study showing no Bb left after treating with Antabuse in a laboratory setting?
And the patients (a small number yes but significant for the outcome) who remain symptom free after treating with Antabuse and nothing else.
I have been sick since 2002 and have looked for a cure since then. In my opinion, I have seen nothing that has the promise of a miracle cure like this drug has.
There is little downside to this drug, it is very cheap and has few adverse side effects. I think that anyone who has Lyme and has failed to respond to other treatments should try to find any way possible to get their hands on this drug and try it.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
True but two people had very severe side effects- losing consciousness is a big deal to me. I just wish more studies were done on this.
Posts: 95 | From new york | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- He speaks to several possible future approaches - and also clearly discusses the need for objective assessment, trials, study of such. Well written in that regard, especially concerning the multiple variables. Yet, still hopeful.
Novel drugs for Lyme - LymeMD Blog - Thursday, July 18, 2019
The dry spell is over. We have some promising new therapies. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Good luck DaveNJ! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Hello all, long time! I started Disulfiram two weeks ago... 125 mg three times a week, then 125mg daily for a week, followed by alternating doses of 125-250mg. Next week... straight 250 mg daily. After that, hopefully 500mg daily. My only side effect is severe fatigue. I will update when necessary. Peace, love, and WELLNESS! James
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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quote:Originally posted by JRWagner: Hello all, long time! I started Disulfiram two weeks ago... 125 mg three times a week, then 125mg daily for a week, followed by alternating doses of 125-250mg. Next week... straight 250 mg daily. After that, hopefully 500mg daily. My only side effect is severe fatigue. I will update when necessary. Peace, love, and WELLNESS! James
Thank you for checking in, and to echo what everyone else has said, keep us updated!
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
I will, I appreciate that many people drop off and leave you hanging.
If this works. I’ll post it here.
I do find my herx somewhat strange. It’s not necessarily a bad feeling, just peculiar, and it doesn’t feel like what I normally experience. There are no neurological symptoms for example. It feels like I have the flu, minus any sense of lethargy. Just that warm burning feeling. Except milder.
The herx symptoms developed within two hours of my first dose.
The medication itself is wicked cheap, and the doctor I saw gave me a six month script. I think we’ve all spent crazy money getting well. This one won’t break your bank.
Posts: 146 | From Virginia | Registered: Mar 2010
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quote:Disulfiram has worked me, My condition before starting on day 1 and my condition on day 35 is night and day. I don't really know how to describe it. It feels like a dream. I still don't believe I've improved this much in 35 days. I know some are going to be skeptical and think "too good be to true". I'm just being honest. I had to go through hell for about two weeks of a crazy herx to get here. I am still symptomatic and expect to have some bad days going forward due to herx or flare. But...seriously guys...this is working for me and I expect it to get me better. To better frame this......if I was absolutely forced to go get a full time job at this moment I'm confident I could do. I think it would be miserable at times, and would not be ideal for my long term health because I'm in a critical healing phase right now, but I think I could do it.
As I said above, it is my opinion that anyone with chronic lyme should do whatever they can to get their hands on this drug and try it.
In dealing with this illness since Nov. of 2002, I have not seen a more promising treatment than Disulfiram. And it isn't even close.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
I'm on day two, and I'm just feeling better.
Not sure how to describe it.
He does note that the herxes grew severe around day ten. For me though, historically, I've never had bad ones. Just mild symptoms that let me know the drug was working.
quote: I have not seen a more promising treatment than Disulfiram. And it isn't even close.
I feel the same way.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
A few more thoughts on what Charles posted.
I strongly encourage EVERYONE to click on the link and read the entire message. I agree with the statement in the link that in his opinion "this is about to be a game changer".
Mariel, I am going to say again that it is my belief that this drug is very safe, and certainly so when compared to other drugs such as the fluoroquinolones.
Without going back and looking, I believe that the case of the person losing consciousness that you were concerned about was due to an interaction with another drug. That can be controlled.
If this drug is as effective as it seems to be at killing Bb, I believe everyone is going to have to experience some bad herx symptoms on the way to healing.
It would not surprise me if some of the reported adverse effects were simply herx symptoms, which is going to be unavoidable to some degree.
I am the opposite of Charles, herx symptoms have always been very severe for me. If I can get started on this treatment, I am going to start slow, maybe 100 mg every few days for a few weeks to see how I do.
If this drug were inherently dangerous, it would not be handed out to alcoholics as it has been. Just mho.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Day three - my neck is stiff, and hurts a little. My back too.
My brain feels clearer though. Nasal inflammation is down too, and it’s easier to breathe.
Posts: 146 | From Virginia | Registered: Mar 2010
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
To all Lyme pioneers who have now started Disulfiram;
Are any of you currently taking other meds while on Disulfiram?
That is, opioid pain relievers, anti-histamines, benzo's or Xanax, supplements, aspirin, ect?
Are you going cold turkey for the duration of Disulfiram protocol?
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Yes compared to some of the other stuff I have taken, especially Ketek which was taken off the market I suppose it is worth trying. Charles- can you list your symptoms when you get a chance? Would like to see if I have any of them. Thanks.
Posts: 95 | From new york | Registered: Jan 2012
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The disease manifest in different ways, which may depend on our genetics. And there are presumably different strains. Symptoms also overlap from one illness to the next. There's also the issue of what does normal look like. We've all grown so used to being sick, that I don't think we do a good job of identifying our own symptoms. We've grown so used to them.
I have been diagnosed with Lyme, Babesia, and Bartonella.
[ 08-08-2019, 03:15 AM: Message edited by: Charles12 ]
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
True but if you had similar symptoms to mine and you saw improvement that would be useful to me but I understand if you don't want to share that.
Posts: 95 | From new york | Registered: Jan 2012
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posted
It’s not about privacy, I just don’t think that would be a useful way of determine if you would benefit.
The laboratory data says you should benefit, it is the most effective compound they’ve ever tested for Lyme, and the anecdotal reports in the journal Antibiotics are astounding.
Those alone, remission! Warrant an attempt.
No one makes claims about remission. It just doesn’t happen.
[ 08-08-2019, 09:52 PM: Message edited by: Charles12 ]
Posts: 146 | From Virginia | Registered: Mar 2010
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Continued neck and back stiffness. My skin has a pleasant burning sensation that comes and goes. My thinking remains clearer. My eyesight is much crisper this morning. Vision is noticeably better.
I did experience unusual fatigue last night. And I slept like a dead man.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Thanks for sharing your experience Charles. I agree with everything you said. I will be starting Disulfiram w- my LLMD in September.
It is estimated that there are well over 1000 patients on this therapy currently and the number is growing exponentially.
My Dr. has already seen success with Disulfiram on a few patients with one being described as worst case prior to therapy.
Don't let the few case reports alarm you. The early adopters for any therapy tend to represent the most difficult complex cases.
Posts: 184 | From CT | Registered: Aug 2006
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quote:Originally posted by Badtick: Thanks for sharing your experience Charles. I agree with everything you said. I will be starting Disulfiram w- my LLMD in September.
It is estimated that there are well over 1000 patients on this therapy currently and the number is growing exponentially.
My Dr. has already seen success with Disulfiram on a few patients with one being described as worst case prior to therapy.
Don't let the few case reports alarm you. The early adopters for any therapy tend to represent the most difficult complex cases.
Badtick, thanks for posting this. I think that the main thing moving forward will be some kind of agreement on standard dosage.
Right now it appears to be 500mg a day, but I have read of some people taking substantially less than that and doing well.
Also, for people who experience very severe herx symptoms or have problems with detoxing, there will probably need to be some kind of adjunct therapy as well in addition to the Antabuse.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Hi everyone,I haven’t posted in a long time but I’ve been lurking. I’m still sick and disabled.
I’m starting disulfiram tonight. Stopping all abx...continuing ivig, probiotics ,magnesium and b12.
I am 1 of 4 patients my llmd wants to try it on. Low and slow is the plan. 1/4 pill for three days add 1/4 every three days until I reach 500 mg. Bloodwork every two weeks.
Posts: 137 | From New england | Registered: Aug 2012
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quote:Originally posted by munchin: Hi everyone,I haven’t posted in a long time but I’ve been lurking. I’m still sick and disabled.
I’m starting disulfiram tonight. Stopping all abx...continuing ivig, probiotics ,magnesium and b12.
I am 1 of 4 patients my llmd wants to try it on. Low and slow is the plan. 1/4 pill for three days add 1/4 every three days until I reach 500 mg. Bloodwork every two weeks.
Best of luck, munchin.
Please let us know how it goes.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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Started Disulfiram on Aug 19th at 250mg every other day. I ramped up to every day quickly and I can say that the herx is pretty severe.
I am convinced it is a herx because all my Lyme symptoms are exacerbated...no new symptoms. Also, when I take a day off the symptoms are relieved.
I did significant research on this and feel comfortable about the risk/reward ratio. I am however, finding that choosing a tolerable dose is very difficult for me.
I am a long term Lyme patient and like many of you have a complicated symptom and treatment history that I'm not willing to share at this time. I will say that I was as close to cured as ever using mild hyperbaric therapy (you can see my posts on the long LymeNet thread on that) but relapsed while trying to detox mercury with IV and oral therapies.
I am very happy to see a thread on this subject and hope that this is the "cure" we have all been waiting for.
I feel a little feverish, but I don’t have a fever.
I get cold and warm flashes. But I don’t feel the need to layer up. I’m not actually cold.
My neck and back remain stiff.
My thinking remains clearer, I’m quicker on my feet.
Posts: 146 | From Virginia | Registered: Mar 2010
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by JRWagner: Hello all, long time! I started Disulfiram two weeks ago... 125 mg three times a week, then 125mg daily for a week, followed by alternating doses of 125-250mg. Next week... straight 250 mg daily. After that, hopefully 500mg daily. My only side effect is severe fatigue. I will update when necessary. Peace, love, and WELLNESS! James
JRW, what a delight to see an old-timer like you back here at LymeNet again and to know that you are going to be able to take advantage of this new promising antibiotic protocol with Antabuse.
You deserve this opportunity more than anyone else I can think of, knowing your very long Lyme history, and that you joined LymeNet way back in 2002, around the same time that my daughter and I did.
Luckily, our daughter celebrated the tenth anniversary of her recovery, without relapse, from Lyme at the end of this last year (Dec., 2018), although she hasn't written up her success story yet, and I'm reluctant to do so without her express approval. I know that you would remember her (screen-name initials LST) from those earlier days here at LymeNet.
We are both wishing you the very best of luck with Antabuse. Yes, please do keep us posted regarding your progress and ultimate outcome.
Posts: 4563 | From TX | Registered: Sep 2002
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Charles, thank you for being willing to try this and report your progress to us!! You are a superhero.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I appreciate the sentiment, all I’m doing though is trying to pass on my experience, in the hope that it may be useful to other people. The only sacrifice I’m making is a few minutes of time, here and there.
I do hope this is the one. And that I’ll be able to achieve remission. But if that doesn’t happen, I’ll record that here too.
I am hopeful though. And I believe, based on the laboratory research, the anecdotal reports, and my own experience, that this may be it.
[ 08-12-2019, 01:15 AM: Message edited by: Charles12 ]
Posts: 146 | From Virginia | Registered: Mar 2010
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Researcher Dr Brian Fallon Columbia University Disulfiram Clnical Trials for Chronic Lyme
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I've read some patients have been having trouble locating pharmacies that can get it. Is anyone here having that problem? Or if you've heard that it is an issue? I saw it on a facebook group, Disulfiram for Lyme Support Group (Antabuse). There is a lot of feedback there.
I went to the FDA shortage webpage and saw that Mylan stopped manufacturing it in May. I sure hope that there are enough other manufacturers to meet the need. There may not be.
It's an old, cheap generic med that's been around for 70 years! No big profit there, unless they jack up the price (hope not).
Posts: 3771 | From around | Registered: Mar 2008
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This protocol is not for sissies! I'm only on day 9 but I think I ramped up to 250 mg too quickly so I am going back to 125 mg every other day or even every third day until the herx Sx become manageable. As it is I am unable to work or do much of anything during this herx.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Day 12 - felt proper feverish and just passed out for half the day. The other symptoms remain, but my head feels a lot clearer than it was even just a few days ago.
I was at lunch the other day and I was in the awkward position of eating with my boss, who was dead set on talking about politics.
We do not share the same politics.
I mention this because I was able to actually steer the conversation out of any danger zones, without simply shutting it down or otherwise offending him.
In terms of cognition, I feel like someone who’s gone from grunting caveman, to harnessing electricity, in the space of a week.
Posts: 146 | From Virginia | Registered: Mar 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Wow, Charles, just wow.
Thank you for the info on the 250's.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Sorry- have had that too.
Posts: 95 | From new york | Registered: Jan 2012
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Dig a little deeper folks and read the warnings about Lyme folks needing to go very slow with this product.
You are not going to win this race by herxing and overwhelming your body.
What are you doing for outstanding liver support during this?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by map1131: Dig a little deeper folks and read the warnings about Lyme folks needing to go very slow with this product.
You are not going to win this race by herxing and overwhelming your body.
What are you doing for outstanding liver support during this?
Pam
What Pam said bears repeating, so take heed.
I say this as the mother of a recovered Lyme patient from "ten plus" years ago -- although she didn't have the advantage of antabuse back then, of course. Nevertheless, the basic principle is still the same, no matter which therapy protocol you are following.
The body needs adequate time to process and to detox the toxins which are released during Herxheimer reactions, and if you try to fast-forward through this slow and tedious process, then you are simply adding injury to insult.
"Impatient patients are their own worst enemy." That used to be our old motto. This same motto will keep you out of trouble, too, if if you practice patience and proceed slowly and cautiously.
"Haste makes waste" is another good motto to keep in mind, too.
Repeat those mottos like a mantra, if necessary, in order to avoid the mistake of trying to speed up the process and then experiencing those inevitable setbacks.
One more mantra: "Slow is fast, and fast is slow."
Posts: 4563 | From TX | Registered: Sep 2002
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My head is clear and I feel vaguely feverish most days. The gains in cognition are amazing. In retrospect, I was in pretty bad shape. The flu like symptoms. Those are really manageable.
Every seven days or so, I have a flare of what might be Babesia symptoms. Not air hunger, but pain.
I do think this is working.
I’m going to set some phone reminders, so I can take stock at 30 days, and 60 days. But for now, I just think I’m getting better.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Charles- do you have neuropathy- burning nerve pain?If so is that better? Thanks.
Posts: 95 | From new york | Registered: Jan 2012
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Thanks for the update...so encouraging. i also indicated on an earlier post that i was going to start this protocal. I decided that i would put in 2 solid months of strict diet and see if i could get my body better prepared as truth be told after 13 years i've just been ignoring this illness and eating and doing what i want. A form of coping i suppose but not one that i recommend.
I am two weeks in : no sugar , no carbs , no dairy and no caffeine. Trying to get my inflammation under control. (which is working)
I plan on starting Antabuse on Oct 1st.
I look forward to being a guinea pig. If it helps me it will help anyone ..cuz i'm a mess.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Thanks for the update...so encouraging. i also indicated on an earlier post that i was going to start this protocal. I decided that i would put in 2 solid months of strict diet and see if i could get my body better prepared as truth be told after 13 years i've just been ignoring this illness and eating and doing what i want. A form of coping i suppose but not one that i recommend.
I am two weeks in : no sugar , no carbs , no dairy and no caffeine. Trying to get my inflammation under control. (which is working)
I plan on starting Antabuse on Oct 1st.
I look forward to being a guinea pig. If it helps me it will help anyone ..cuz i'm a mess.
Dave
Dave, I am in pretty much the same situation. I am 17 years in and my life is pretty much destroyed, and the depression that has caused has resulted in me not giving a damn anymore about a lot of things, including diet.
I knew it was going to take me a little bit of time to get this drug, so about a month and a half ago I tried to go on a strict diet as well to prepare myself for the rigors of treatment. I have lost 15 lbs and inflammation seems to be down.
One thing I have done is to drink 4-6 cups a day of decaf green tea. I swear I have herxed on this, and my lyme symptoms have subsided noticeably since doing this.
Anyway, I am still pretty much a mess, lol, and feel like this is either going to cure me or kill me. We'll see I guess.
Good luck to you on beginning this drug on Oct. 1.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Have not tried diet changes- why would that help? If you cut out all of those things from the diet, what then do you eat?
Posts: 95 | From new york | Registered: Jan 2012
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posted
mariel21, dietary changes have profound actions on the body but the primary one in this case is the anti-inflammatory effects. Also, by reducing carbs and getting all the amino acids you need, you upregulate detox pathways. Hope that helps.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
I posted on Aug. 12th, so this is a quick update. So far I have had to reduce my Disulfiram to 250 mg every third day. The herxing is severe if I increase it more than that. No windows of healing at this time but I am hoping for that when I can finally increase my dose.
The only thing that reduces the symptoms is coffee enemas, so I've been doing that every other day. I was hoping for some quick relief but it looks like I need to be in it for the long haul.
Does anyone else find an increased appetite? I am hungry all the time which is unusual for me.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Eating well is hard work, and certainly laudatory. I do think effective medicine is the best and ultimate cure for our ills though.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
To follow up digby's comments the purpose for reducing all those inflammatory foods it's reduce the burden on my body and my digestive system. I can honestly say seven years removed from my last antibiotic I am still dealing with fungal issues. While I was working a high-stress corporate job for years I tended to stress eat cuz of course I wasn't feeling well in fact I was just hanging on.those are very hard habit to break especially when they go back to when I was a kid.
but with the promise of this new drug I see no point in taking it if I'm not in the best shape I can be for someone with chronic lyme.
Sidebar to that is 12 days with no sugar and my inflammation has easily been reduced to the tune of 50%. The bad thing for me is every time I do this my body inflammation improves and my brain inflammation gets worse obviously because a fungal die off. So I'm trying to remove that burden or at least reduce it before taking antabuse.
posted
We’re sick because we’re sick. Diet does influence how we feel, but it’s a minor component of that. Outside of something like a serious food allergy.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Charles, I respectfully disagree. Diet can't cure tick borne diseases but by reducing inflammation and up regulating immune function is does play a part.
It also has profound effects on other chronic conditions which helps in general. For example if a person has metabolic syndrome diet can fix that and reduce the damage from AGEs. Or if you gut microbiome is unhealthy diet can help.
I understand that the bug is primary but a good diet can be a useful tool in the process.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
I tried dairy free- gluten free and I got worse so in my case I don't know if diet changes would help but easy enough to try. I have never given up sugar but it's worth seeing if it helps.
Posts: 95 | From new york | Registered: Jan 2012
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posted
mariel21, Yes everyone is different. I am a low carb/keto coach but I would never suggest that it's the best diet for everyone. The best we can do is experiment for ourselves.
Posts: 539 | From NW Arkansas | Registered: May 2003
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