LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Antabuse (Page 4)

 - UBBFriend: Email this page to someone!   This topic comprises 4 pages: 1  2  3  4   
Author Topic: Antabuse
mariel21
Member
Member # 35881

Icon 1 posted      Profile for mariel21     Send New Private Message       Edit/Delete Post   Reply With Quote 
Is everyone taking DSF better now than before they started? Please let us know.
Posts: 88 | From new york | Registered: Jan 2012  |  IP: Logged | Report this post to a Moderator
no_lyme_in_florida
LymeNet Contributor
Member # 5537

Icon 1 posted      Profile for no_lyme_in_florida     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have been taking this drug for just about two months, with a couple of breaks due to herxing and a severe mood change I attributed to the drug. I am presently taking 50mg's of an effervescent pill every other day and will soon increase the dose to 100mg.

I continue to experience some unpleasant mood changes, mostly depression and anxiety but also some feelings of anger at times, but there is absolutely no doubt that I am much, much better than before I started. I am routinely walking between 3 and 4 miles several times a week, and have started using the small gym at my apartment complex. Both of those things would have been impossible for me before starting the drug.

I also have way less brain fog, and I am starting to remember more and more what it feels like to be well. In a conversation I had with a friend in Texas that I have known for over 30 years, and who was one of the first people I started telling 17 years ago that something was really, really wrong with me health-wise, she got silent for a few seconds and then told me that I was starting to sound like the old Jeff she knew from long ago. She said that she had not heard that from me since basically getting sick. I can feel my old personality coming back, as I now laugh at things that during most of my illness I would have just ignored or been unable to appreciate due to the misery I was in.

I am not cured by any means, and if I stopped taking the drug now I know that I would just end up back in the same place I was before starting, but I am only two months into treatment at a very low dose, so I am prepared for a 4 to 6 month, or longer, treatment period.

I might have stopped this drug 5 or 10 years ago during the first month when the herxing was brutal, but I am simply not going to live with this illness any longer and am going to fight through whatever I have to to hopefully come out of this with my life recovered. I will keep posting as honestly as I can about my experiences, and if I don't get well I will say so, but right now I am doing better and have more hope than at just about any time in the 17 years I have been sick.

Posts: 233 | From ft. myers, florida | Registered: Apr 2004  |  IP: Logged | Report this post to a Moderator
Digby
LymeNet Contributor
Member # 3888

Icon 1 posted      Profile for Digby     Send New Private Message       Edit/Delete Post   Reply With Quote 
no_lyme_in_florida...Great post! Thanks for the update. I am at close to 3 months on DSM. I've been doing 125mg EOD for most of this time. I continue to herx but so far I haven't seen any improvements. I have been sick for decades, so I am giving it more time. I just upped the dose to 250mg today to see if I can tolerate it.
Posts: 497 | From NW Arkansas | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
mariel21
Member
Member # 35881

Icon 1 posted      Profile for mariel21     Send New Private Message       Edit/Delete Post   Reply With Quote 
Glad to hear that Jeff. Keep us posted.
Posts: 88 | From new york | Registered: Jan 2012  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by no_lyme_in_florida:
quote:
Originally posted by DaveNJ:
Charles,

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: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
Beware of drinking green tea while taking Disulfiram. Acetaldehyde levels for a green tea bag are: (ng/g) 2,099.45 ± 187.10. From everything I've read online, avoiding foods high in Acetaldehyde such as bananas, pineapples, regular coffee, green tea, melons, yogurt, etc. is extremely important while taking Disulfiram (Antabuse). See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4609974/ for some lists of foods high in Acetaldehyde.
Posts: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
DaveNJ
LymeNet Contributor
Member # 17362

Icon 1 posted      Profile for DaveNJ     Send New Private Message       Edit/Delete Post   Reply With Quote 
Dave [/qb][/QUOTE]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. [/qb][/QUOTE] [/QB][/QUOTE]


Fox, after seeing my LLMD on Oct 1st i was advised to put in another 6-8 weeks on the diet as the toxic output of fungus can cause a reaction with DSF.

i'm now in my 12th week and my inflammation is up and and down but i'm really pounding away at the fungal infection which has made my brain fog pretty severe.

i'm still planning on starting DSF but it looks like Dec 1st at this point.

Dave

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
Disulfiram is a known, broad spectrum anti-fungal agent (see www.researchgate.net/publication/6171222_Antifungal_Potential_of_Disulfiram and www.ncbi.nlm.nih.gov/pmc/articles/PMC3910836/#B41
In other words, the "toxic output of fungus can cause a reaction with DSF" as you described, may just be a Jarish-Herxheimer reaction, as the fungal infection(s) are killed off. I'm not sure why your LLMD would want you to delay starting Disulfiram because of a fungal infection. If you must delay starting Disulfiram, can your LLMD put you on Diflucan for a month? Diflucan is great, but it can be hard on the liver, and most LLMDs won't prescribe it for more than a month or so. What about starting on a really low dose of Disulfiram, e.g. 62.5 mg once every 2 or 3 days, while using any number of Detox agents (e.g. L-Cysteine, Alka Seltzer Gold, etc.)? It has been my personal experience that adhering to a strict anti-yeast diet while taking multiple ABX has not always been sufficient, and anti-fungals were necessary to keep the fungal loads down.

[ 10-30-2019, 04:20 AM: Message edited by: FOX ]

Posts: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
DaveNJ
LymeNet Contributor
Member # 17362

Icon 1 posted      Profile for DaveNJ     Send New Private Message       Edit/Delete Post   Reply With Quote 
Fox,

Thanks for the advise but even if I wanted to start DSF I couldn't as it's backordered across the USA. Though I'm in agreement with the approach as I think getting ahead on the fungal infection should lessen the misery I know is coming. I'm on week 12 of ACD week 7 of antifungals (herbal) week 3 probiotics and week 1 of fluconazole.so I'm crushing it from all angles and of course I'm sick as hell....though sick for me is all CNS stuff...brain fog is horrible.No memory, mood swings etc.

And once I get done with this onto DSF to probably go thru this all over again.

Dave

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
I started on DSF a few weeks ago. The retail (chain) pharmacy I use said their supplier couldn't get it, but they checked with one of their other pharmacies locally, which had it, and I got it the same day. Shop around. If you can't get it, try a compounding pharmacy. Starting out on a really low dose of DSF, and slowly working your way up, may help to avoid major Jarish-Herxheimers, according to anecdotal accounts I've read online about this. I've had no problems with this approach, so far, anyway.
Posts: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
munchin
LymeNet Contributor
Member # 38744

Icon 1 posted      Profile for munchin     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just checking in from August. I got up to 125 mg suffering all the way.

I was actually relieved to take a break to treat a respiratory infection. I have cvid so needed abx, two rounds.

I’ve started again at 62.5 mg twice a week. I’m two weeks in and man o man its a rough ride with this drug.

No improvements, living on the couch inspecting the ceiling

Posts: 137 | From New england | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
NIH Clinical Trials For Disulfiram;

https://clinicaltrials.gov/ct2/results?cond=&term=Disulfiram&cntry=&state=&city=&dist=

Lyme disease.
Drug Abuse
Germ Cell Tumor.
Glioblastoma
Breast Cancer.
Alcohol Abuse
HIV.
Opiate Abuse
Melanoma
Metastatic Pancreatic
Prostate Cancer.
Non-small cell Lung Cancer
PTSD.
Healthy Living

Thank you to all the volunteers.

Posts: 2019 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

Icon 1 posted      Profile for hiker53     Send New Private Message       Edit/Delete Post   Reply With Quote 
I applied for the study but to qualify you have to have had some success with antibiotics. I had zero success.

Decided the multiple trips to NY were too much from IL

They also start you out with 500 mg of Antabuse. From reading here that sounds like a killer.

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 6061 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

Icon 1 posted      Profile for Bartenderbonnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Not to worry hiker about high doses during clinical trial.

According to disulfiram for Lyme Facebook, they reached out to Dr Fallon, who's conducting the clinical trial at Columbia. Many patients were concerned about this. He addressed this with lowering his doses.

I'm awaiting feedback on Babesia improvements and then it's a GO for me!

Posts: 2019 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745

Icon 1 posted      Profile for bcb1200     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just wondering how folks are doing on this new therapy.

Dr Ls reports are impressive. https://www.mdpi.com/2079-6382/8/2/72/htm

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3099 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162

Icon 1 posted      Profile for TX Lyme Mom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Has anyone posted this link yet?

http://disulfiram.net

This webpage (link above) offers a roadmap to success with Disulfiram -- "The Right to Be Cured" -- compiled by a team of successful early adopters of Disulfiram therapy.

Posts: 4556 | From TX | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
Digby
LymeNet Contributor
Member # 3888

Icon 1 posted      Profile for Digby     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks TX Lyme Mom
Posts: 497 | From NW Arkansas | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
cht girl
LymeNet Contributor
Member # 26170

Icon 1 posted      Profile for cht girl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you for sharing Lyme Mom. I am getting ready to start Disulfiram, and I will use the link as my bible for the next few months. I am feeling hopeful that this will finally be a cure.
Posts: 143 | From Louisville KY | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
cht girl
LymeNet Contributor
Member # 26170

Icon 1 posted      Profile for cht girl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Question for people taking Disulfiram. I am trying to find alcohol free products for grooming, makeup hairspray, etc..... and finding it difficult to find products that don't seen to have some type of what sounds like could be a alcohol derivative in them. Anyone on the protocol still using hair color, makeup, items that have what seems to be a small amount of alcohol in it without problems? I just need to know how vigilant to be.

Thanks
L

Posts: 143 | From Louisville KY | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

Icon 1 posted      Profile for hiker53     Send New Private Message       Edit/Delete Post   Reply With Quote 
http://disulfiram.net/

This has tons of info including soaps, shampoos etc.

Also diet, detox and more.

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 6061 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
WakeUp
LymeNet Contributor
Member # 9977

Icon 1 posted      Profile for WakeUp     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by no_lyme_in_florida:
I live in an apartment complex with a pool about 500 to 600 feet from my front door. For the last 6 months or so I have barely been able to walk to that pool and sit at one of the tables under an umbrella.

On Saturday, as my herx was going away, I went to the pool and actually got in the water and floated around some. I tried to swim a little but my left shoulder was too painful. I didn't stay long but it felt great to get in the water. No way in hell would I have done that a month ago.

On Sunday, yesterday, I rested most of the day and when I got out of bed in the evening I felt good enough to go for a little walk. The circular road around my apartment complex is exactly 1 mile around. I started to walk toward the pool with the intention of going a little farther and then turning around.

As I walked I kept putting one foot in front of the other until I was halfway around so had no choice but to keep going. I stopped at a bench once for a minute or two, but made it all the way around for one mile of walking. Previously, walking the 500 or 600 feet to the pool and coming back would leave me shaking and very dizzy.

Today, after sleeping well and getting out of bed at noon, and eating a healthy breakfast of yogurt and plain oatmeal, I went to the pool again and got in the water. And guess what? I started swimming from one end to the other (about 35-40 feet). My shoulder was a little stiff but mostly pain free, and as I swam it felt better better and better.

Over a couple hours of getting in and out and resting in the shade under the umbrella, I swam about 20 short laps. My arms actually felt like they were working again, and my muscles did not feel like jelly.

There is NO DOUBT, none at all, that this drug is doing something that no other drug or treatment has done in the last 17 years of fighting this damn disease.

Not months and years of taking Doxycycline, tetracycline, minocycline, Zithromax, Ceftin, Flagyl, Biaxin, two rounds of Bicillin LA shots, 3 months of IV Claforan, and other antibiotics that I can't remember now, has had the effect that this drug seems to have had. I am by no means cured, but after that first horrific herx settled down this weekend, I was able to do some things that I have not been able to do in a very long time.

The only treatment that ever seemed to work previously was the 4 months of Malarone I took for Babesia.

I know that this drug is doing things that nothing else has been able to do. I can just tell by the herx first of all, and now by how I feel after the herx. I haven't had this much hope at any time in the 17 years I have been sick.

I plan on going low dose as I said above for however long I need to, I am in this for the long haul and don't care how long it takes. Right now I am thinking about going for a walk again around my apt. complex, but might wait til tomorrow after the swimming I did earlier.

I am almost in tears reading that you can actually swim again!! Praise to God!!

And I thought my chronic Lyme (1992) was bad-- since I am in bed about 80% of the day with bad fatigue, but at least I do have enough energy to swim slowly in a small pool for one hour a day, and then to make dinner-- but that is about it. When I read your story I felt so grateful for the ability to even swim at all.

I am so happy that you are getting better!! I really am crying now. We have all suffered so much, but many of us have just kept it inside and tried to adapt. Swimming is one of the main things that has kept me alive. If I could not swim I don't know what I would do. Recently the right knee was very painful for breast stroke for a while, but I just shifted to a flutter kick breast stoke, and now its better.

Cleaning house is a huge chore for me. Even short shopping trips tire me out. Yes-- I did the same as you-- doxy, then 2 years on amoxicillin with probenecid, then other things ranging from Flagyl to Tinidazole. Flagyl cured my brain fog temporarily, and the doxy and amox temporarily cleared up symptoms, but they always came back. Some herbs like samento did help, but then I developed severe side effects. And now I have that nasty skin fiber condition.

But maybe there is hope now in my senior years! Thanks so much for sharing your story.

I think I will be giving the Antabuse a try after the holidays.

Posts: 696 | From New York | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
Years ago, during an office visit in NY with Dr. B, a prominent LLMD, he asked me about my exercise regimen. When I told him that I swam at least 45 minutes, 3 or more times per week, he admonished me: "Don't go into a pool until you are over this." I asked him why, and he explained that by immersing oneself in a pool, you lower your body temperature," (which is what you don't want to do, when fighting an infection, apparently). He recommended P/T, then enrolling in a Trim & Sculpt (non-aerobic) class at a local gym. He cautioned against any aerobic activity until I was close to remission. I followed his advice, which worked out very well.
Posts: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Broxin
Member
Member # 52040

Icon 5 posted      Profile for Broxin     Send New Private Message       Edit/Delete Post   Reply With Quote 
@fox, thats weird. Didnt dr bruscano specifically said that we NEED to exercise to get well? You think he meant non-aerobis exercise?

And what about tue mHBOT method then? It works with up to 100% of oxygen

Posts: 68 | From Germany | Registered: Nov 2019  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
If you look at Dr. B's "Advanced Topics in Lyme Disease, 2008 edition" please read page 31. Here is an excerpt: "Regular exercise-related movements can help mobilize lymph and enhance circulation. In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed."
Posts: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

Icon 1 posted      Profile for hiker53     Send New Private Message       Edit/Delete Post   Reply With Quote 
I highly respect Dr. B, but sometimes you have to do what feels good. And if swimming feels good, do it in moderation.

I know Dr. B suggests not to exercise every day, but I have to for my shoulder surgery rehab and balance therapy. Well, I take one or two days off per week to rest the body as anyone should with exercise.

Last few years when I was walking every day for 30 minutes is when I felt the best since getting Lyme.

Sometimes feeling good mentally leads to feeling better physically.

[ 12-18-2019, 09:43 PM: Message edited by: hiker53 ]

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 6061 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
Broxin
Member
Member # 52040

Icon 1 posted      Profile for Broxin     Send New Private Message       Edit/Delete Post   Reply With Quote 
Under "sideeffects" There is one thing that keeps me sceptical if i could use it

Its "Avoid if allergic to rubber"

Im alergic to latex.

Anyone that is alergic to latex had any alergic reactions to dsf ?
Or all of you, would you think i should be very cautious if latex is a problem for me?

Posts: 68 | From Germany | Registered: Nov 2019  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

Icon 1 posted      Profile for hiker53     Send New Private Message       Edit/Delete Post   Reply With Quote 
Up for someone to answer Broxin’s question.

Also updates from any users?

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 6061 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
Cass A
Frequent Contributor (1K+ posts)
Member # 11134

Icon 1 posted      Profile for Cass A     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm currently researching disulfiram therapy as potentially being useful to me.

There's a very informative interview with Dr. Dan K in Colorado, who's been using disulfiram in his practice since March of 2019.

https://www.lymedisease.org/bauer-interview-disulfiram/

He goes over many facets, including distinguishing Herxes from newro-toxic effects from the drug, as these latter can cause permanent disability!

It's well worth a study, not just a listen!

Posts: 1235 | From Thousand Oaks, CA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
marie
LymeNet Contributor
Member # 3980

Icon 1 posted      Profile for marie     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was looking at the trial criteria. I didn't have a response to the abx the LLMD had me on. She didn't change them at all during treatment. That's the only long term treatment I received.

I hope I can obtain this new drug if needed. Is this a sulfa drug as I am allergic to them. I have been sick since 1996 with documented bulls-eye & positive ELISA & initial treatment. Treatment didn't knock it out as symptoms began within 6mos & progressed. But no luck for any new treatment since then with negative lyme test.

Posts: 331 | From southern new jersey | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
marie
LymeNet Contributor
Member # 3980

Icon 1 posted      Profile for marie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Is anyone going to apply to be in the clinical trial?

I did not have a response to the abx the LLMD had me on. She didn't change them. That's the only long-term treatment I had. Negative lyme test currently. I had tick bite bulls-eye documented & positive ELISA in 1996 with doxy treatment. Seems abx didn't resolve infection.

Allergic to sulfur drugs also. Just read online you can still take it as long as you don't have an allergy to rubber. Is that the same as latex. I was tested & have a propensity for allergy. After bloodwork-my arm appears red & swollen like a possible allergy.

Posts: 331 | From southern new jersey | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
marie
LymeNet Contributor
Member # 3980

Icon 1 posted      Profile for marie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Can you take this drug if you are allergic to sulfur drugs & possibly latex?
Posts: 331 | From southern new jersey | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
marie
LymeNet Contributor
Member # 3980

Icon 1 posted      Profile for marie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Is this a sulfur drug? Can you take it with a possible allergy to latex? Has anyone volunteered for this trial? Can you contact Dr. Fallon?
Posts: 331 | From southern new jersey | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
marie
LymeNet Contributor
Member # 3980

Icon 1 posted      Profile for marie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Can you take it if you are allergic to sulfur drugs and possibly allergic to latex?
Posts: 331 | From southern new jersey | Registered: May 2003  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
According to the "Disulfiram for Lyme" article posted online: "Although it contains sulfur, disulfiram is not a sulfonamide, i.e. it is not a sulfa drug, so sulfonamide allergy problems do not apply to this drug." See: http://www.disulfiram.net/

I would ask your doctor or pharmacist to confirm this. A doctor specializing in allergies and immunology might be helpful, although in my experience few of them have any experience with Lyme.

Posts: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Cass A
Frequent Contributor (1K+ posts)
Member # 11134

Icon 1 posted      Profile for Cass A     Send New Private Message       Edit/Delete Post   Reply With Quote 
Any answer yet on the latex issue? I have tested allergic to that, but not to rubber.
Posts: 1235 | From Thousand Oaks, CA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
DaveNJ
LymeNet Contributor
Member # 17362

Icon 1 posted      Profile for DaveNJ     Send New Private Message       Edit/Delete Post   Reply With Quote 
Folks,

just providing a small update. I'm still ramping up DSF which started at the beginning of February. I'm now at 62.5 a day. No miracles and no real reaction.

I did a candida clean up before starting and continue to do so. I've seen some cognitive improvement due to that protocol so hopefully I can get some momentum.

I'll post again in a month.

Dave

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Verna
Junior Member
Member # 52107

Icon 1 posted      Profile for Verna     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks to everyone who's posted about taking disulfiram. I'm trying it. In case it helps someone else, here's my experience so far.

I've been dealing with Lyme for 9 yrs, including 3 acute episodes and the chronic type. The last 4 yrs have been debilitating. Sometimes abx (I tried all kinds) worked for me, but not always.

I started on disulfiram 2 wks ago, 125 mg twice per week.

I'm allergic to sulfa drugs and I've had no trouble with disulfiram. I'm eating bananas, coffee, pineapple and anything else I want with no bad reaction. (Years ago, because it helped with my symptoms, I stopped eating sugar, flour, dairy and alcohol.) Using alcohol-based hand sanitizer or wipes hasn't been a problem either.

So far, disulfiram seems to have kicked up my worst Lyme symptoms, like crushing fatigue. There are times when I can't even sit up or lift my arms. The shooting pains in my arms, legs, hands and feet are worse than before and keep me awake at night. The ringing in my ears is bad. Dizziness is bad, like I'm spinning on a raft in the ocean. Brain fog and headaches are the same.

I'm not feeling any psychological effects such as increased anxiety like some other people reported. If anything, I feel calmer. And my heart isn't doing that stop-start-stutter thing it does when Lyme flares.

Still hopeful that things will get better. Wishing you all well.

Posts: 1 | From WI | Registered: Mar 2020  |  IP: Logged | Report this post to a Moderator
Garz
Member
Member # 52095

Icon 1 posted      Profile for Garz     Send New Private Message       Edit/Delete Post   Reply With Quote 
@ Verna - thanks for posting
i am sure many many people here are keen to hear of your trials and those of others trying Disulfiram here - so
good luck with your trial and please do keep the updates coming

:up

Posts: 75 | From UK | Registered: Feb 2020  |  IP: Logged | Report this post to a Moderator
DaveNJ
LymeNet Contributor
Member # 17362

Icon 1 posted      Profile for DaveNJ     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm on day 59 and I just moved up to 62.5 2x a day. It wasn't until about 2 weeks that I began having a reaction. My anxiety/brain fog has really been ramped up. My legs ache more than usual and my sleep has been disturbed as well. I've never had an a issue rolling over and going back to sleep. Now I wake up after 6 hours and that's all the sleep I'm getting.

The brain fog which has always been my #1 issue is pretty severe again and then taking into account the news each day its very easy to feel overwhelm.

That said, this is what I anticipated.

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
BobG
LymeNet Contributor
Member # 39642

Icon 1 posted      Profile for BobG     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hang in there DaveNJ. It is like a wall you need to break through, but once you are on the other side, you'll be glad you did. Do all the things that help with the herx and be treat yourself well. Keep us updated.
Posts: 360 | From Massachusetts | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
tickbite666
LymeNet Contributor
Member # 43399

Icon 1 posted      Profile for tickbite666     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'll chime in. Started first 62.5mg dose on January 27, and worked up to 375mg on Feb 26. Tried to push up to 500 mg in March but backed down to 375mg on March 6.

So been at 375mg per day for a month now, with increased fatigue and insomnia is terrible, and a return of stiff cracking neck, stabbing joint and bone pains, and sore heavy arm and leg muscles... all very familiar sx like the old days.

One word of caution.. I went to re-fill my Rx at CVS last week and they were on back-order with no fulfillment date. I could only get 30 pills from another CVS branch and had to pickup myself. So now I have a refill script for 90-day mail order I'm trying to get from Walgreens, Walmart or Target so I don't get through 30 days and run out again.

Jury still out... but in it for a few more months to see.

Posts: 117 | From ground zero | Registered: Mar 2014  |  IP: Logged | Report this post to a Moderator
DaveNJ
LymeNet Contributor
Member # 17362

Icon 1 posted      Profile for DaveNJ     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by BobG:
Hang in there DaveNJ. It is like a wall you need to break through, but once you are on the other side, you'll be glad you did. Do all the things that help with the herx and be treat yourself well. Keep us updated.

Thanks Bob...appreciate it. I feel very optimistic about things.

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Cass A
Frequent Contributor (1K+ posts)
Member # 11134

Icon 1 posted      Profile for Cass A     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi, friends,

I'm on quite a number of "alternative" media lines and just got a notice that Antabuse is likely to become in short supply, and this problem will likely last for months due to supply system issues.

Here's the list of meds: Drugs most likely to be in short supply: 1. Chloroquine phosphate 2. Hydroxychloroquine 3. Melphalan tablets 4. Anagrelide capsules 5. Disulfiram tablets 6. Irbesartan tablets (very wide use) 7. Losartan tablets (very wide use) and also being tested against coronovirus 8. Venlafaxine extended release capsules (wide use) 9. Levetiracetam immediate release tablets and extended release tablets 10.Diclofenac Potassium tablets 11. Famotidine tablets 12. Fluvastatin capsules 13. Tacrolimus capsules 14. Methyldopa tablets 15. Hydrozyzine capsules 16. Telmisartan tablets 17. Losartan with Hydrochlorothiazide tablets 18. Mycophenolate capsules and tablets 19. reports now on Ventolin (albuterol) inhalers

If you want the full backstory on the supply chain, you can watch this video:

https://www.youtube.com/watch?v=tVzGOvfc5EE

Posts: 1235 | From Thousand Oaks, CA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
"FYI:
 
An excerpt from "Therapeutic options for the 2019 novel coronavirus (2019-nCoV), " published in "Nature Reviews Drug Discovery" on 2/19/20 ("Nature" is one of the most prestigious scientific journals published in the U.K., similar in prestige to it's US equivalent, the journal "Science"):
 
"Approved protease inhibitors including disulfiram, lopinavir and ritonavir have been reported to be active against SARS and MERS. Disulfiram, an approved drug to treat alcohol dependence, has been reported to inhibit the papain-like protease of MERS and SARS in cell cultures ... but clinical evidence is lacking."
 
Here is a link to another article about this, published in ChemRxIV on 3/5/20:
 
https://chemrxiv.org/articles/Targeted_Oxidation_Strategy_TOS_for_Potential_Inhibition_of_Coronaviruses_by_Disulfiram_a_70-Year_Old_Anti-Alcoholism_Drug/11936292
 
Here is an excerpt:
 
"Molecular docking against the two thiol proteases Mpro and PLpro of 2019-nCoV provide evidence to support a TOS II mechanism for two experimentally identified anti-2019-nCoV disulfide oxidants: disulfiram and PX-12. Remarkably, disulfiram is an anti-alcoholism drug approved by FDA 70 years ago, thus it can be immediately used in phase III clinical trial for anti-2019-nCoV treatment." This article also mentions in passing the findings that Disulfiram is gaining stature as a powerful, perhaps universal agent against cancer, among other things.
 
My LLMD (my Lyme-literate shrink) told me last week that he suspects Disulfiram probably provides immunity from the COVID-19 novel coronavirus, although I think he is making an inference based on evidence published on laboratory (not clinical) evidence demonstrating Disulfiram's ability to protect against MERS and SARS, two other dangerous, contagious coronaviruses.
 
Let's hope they can get a clinical trial for Disulfiram for Covid-19 fast-tracked, although given the supply shortage of Disulfiram already in the US, perhaps partly caused by the news that Disulfiram may be the magic bullet for chronic Lyme and Babesia, this news may not be good for Lyme sufferers already on, or trying to go on Disulfiram. My LLMD also said that Disulfiram may not be appropriate for the general public, given that it's a psych drug (with rather severe interactions with not only alcohol, but many other foods and household items, e.g. yogurt, most fruits, coffee, vinegar, Purell, etc.). My LLMD said that he heard that the supply shortage of Disulfiram was supposed to come to an end soon, but his earlier predictions about this, haven't panned out.
 
Let's hope our president doesn't get hold of this info about Disulfiram as a potential magic bullet for Covid-19, like he did with Plaquenil, and promote it during a press conference.  That would throw us Lyme and Babesia sufferers from the frying pan into the fire.

Posts: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am having trouble finding Disulfiram. Does anyone know a reliable, trustworthy pharmaceutical supplier? The compounding pharmacies charge an arm and a leg. I was getting it with a $4.00 co-pay, with my health insurance. The FDA just keeps pushing back the availability dates. Looks like only Alvogen and TEVA are still manufacturing it for the US market. I had been transferring my prescription from one pharmacy to another since the shortage began, but I seem to have run out of options.
Posts: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229

Icon 1 posted      Profile for JRWagner     Send New Private Message       Edit/Delete Post   Reply With Quote 
Walmart can get it... Publix in Florida... inexpensive with GoodRx.
Posts: 1414 | From Ny, Ny | Registered: Oct 2002  |  IP: Logged | Report this post to a Moderator
tickbite666
LymeNet Contributor
Member # 43399

Icon 1 posted      Profile for tickbite666     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had CVS fill my first Rx in January, then found a refill at another CVS in my area. CVS, Walmart, and Walgreens are all out of stock with no back -order date from their supplier in site.

I had to bite the bullet and get a refill from Hopkington Drug last week. 250mg capsules for $108 plus shipping, but tough to cut up for lower dosage.

Other Compounding Pharmacies are in same cost range. I got a 3 month script ready for anyone who can take a mail order under my drug plan.

Let us know what you find.

Posts: 117 | From ground zero | Registered: Mar 2014  |  IP: Logged | Report this post to a Moderator
FOX
Member
Member # 10294

Icon 1 posted      Profile for FOX     Send New Private Message       Edit/Delete Post   Reply With Quote 
The latest FDA update says the supply shortage will be over after May 8th, according to my LLMD, but they have pushed that back every month for the last 6 (?) months, I think. The drug companies aren't interested in manufacturing a drug off patent, they don't make any money on it.
Posts: 22 | From PA | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
  This topic comprises 4 pages: 1  2  3  4   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.