posted
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
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posted
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: 580 | From southern new jersey | Registered: May 2003
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posted
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: 580 | From southern new jersey | Registered: May 2003
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posted
Can you take this drug if you are allergic to sulfur drugs & possibly latex?
Posts: 580 | From southern new jersey | Registered: May 2003
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posted
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: 580 | From southern new jersey | Registered: May 2003
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posted
Can you take it if you are allergic to sulfur drugs and possibly allergic to latex?
Posts: 580 | From southern new jersey | Registered: May 2003
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posted
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
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Any answer yet on the latex issue? I have tested allergic to that, but not to rubber.
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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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
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posted
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
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posted
@ 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
posted
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
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posted
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
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posted
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: 119 | From ground zero | Registered: Mar 2014
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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
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
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:
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:
"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
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posted
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
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Walmart can get it... Publix in Florida... inexpensive with GoodRx.
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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posted
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: 119 | From ground zero | Registered: Mar 2014
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posted
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
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posted
Antabuse is not the only solution to your problem. I say this based on my experience with alcoholism. Other measures are needed to get rid of it. Alcoholism is hard to treat and especially when a person is not committed to treatment and long-term therapy. This drug is one step in the treatment, and it is pretty good, but if you choose to be treated at fherehab.com, there will undoubtedly be a different approach to the choice of the drug. Don't think that the same drug will work for everyone.
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