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Lyme & Disulfiram- Is it safe and does it work???

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Posted 3/6/2019 8:59 PM (GMT 0)
Can anyone please give me feedback on their experience with Disulfiram.
Any co-infections?
Prior treatment plans that may not have worked?
Did Disulfiram work for you?
Pros & cons
Dosage? Other meds at same time?
concerns?
I'm just trying to open the conversation to glean as much information as I can so I can try to educate myself on all the options out there and what my best options are for my teenager. It would be really, really nice to be able to go back to school or function with manageable pain outside of bed.
THANK YOU for any input.
Posted 3/6/2019 11:09 PM (GMT 0)
I haven’t any experience with Disulfiram - I think we do have a few members who have taken it.

Has your daughter had improvements with treatment so far?
Posted 3/7/2019 4:40 AM (GMT 0)
I haven't tried it, but you could try joining this facebook group and asking the same question to the members. I'm sure some have tried it.

https://www.facebook.com/groups/246058769631937/
Posted 12/8/2019 2:21 PM (GMT 0)
Hi Healingher,
I'm sorry your daughter is dealing with this. Her experience is extremely similar to my 14 year old son, The treatments and their reactions are almost identical, and we are still struggling.

He has been on IVIG for about 8 months and is just slightly improved. He has been in school, but his head pain and fatigue are still severe. He has BB, Babesia Duncani and Bart Henslae.

We are now considering Disulfram and it would be great to connect with you if possible.

Thanks,
Chris
Posted 12/8/2019 5:55 PM (GMT 0)
Dilsulfiram works, but the side effects are bad.

It made me feel manic-depressive, and really messed up my sleep. It gets stored in fat and comes out when you lose weight, leading to unexpected effects. It chelates copper and zinc and these came up low on a blood test. It smells bad.

Some people have gotten neuropathy from disulfiram. I did not get this effect on 50 mg per day.

At low doses, I did not have any reaction to small amounts of alcohol (eg soy sauce) but this is a risk. There is also a risk of interaction with tea.

Disulfiram doesn't kill bartonella and can make it worse. I took minocycline and cefdinir with it. Minocycline worked against bartonella, not sure about the cefdinir.

I found sodium valproate to be a somewhat less toxic alternative if you can't tolerate disulfiram. Be aware that valproate has a similar chemistry and some of the same effects, such as disrupting sleep, accumulating in fat, and affecting copper and zinc. It also will not kill bartonella.
Posted 12/9/2019 2:24 AM (GMT 0)
Let me throw you another opinion- I'm on it and have had no effects whatsoever- positive or negative. No die off but no side effects either.
Posted 12/9/2019 3:02 PM (GMT 0)

JovaLyme said...
Has it not made you herx at all Aerose91?

No effect at all?

That might actually be a good thing. It could just be quietly killing things off in an undramatic way.

Having said that, aren't you beginning to think your problems are autoimmune and nothing to do with an active infection? I might have you mixed up with someone else. Apologies if that is the case.

Nope, nothin. That being said, I've been diligent about detoxing for many years now so I try to stay ahead of the curve. But also yes, I have thought for some time now that AI is my biggest problem since killing infections has never given me an improvement in symptoms
Posted 12/9/2019 3:19 PM (GMT 0)
@Aerose91: Im sorry with no effect of DSF on you.

I think (and looks like from other patients), when DSF treatment make symptoms worse (Im not writing about side effects), its clear, Lyme or Co. are main problem. Maybe its possible this: no effects of DSF = lyme & co. are not problem for you. There is another problem to solve - at least it will show the way!

I did one discussion in past like "Not sure if you have Lyme? Try DSF slowly and see what happens...maybe its more clear evaluation that blood tests"

I start DSF this week - really excited (but little bit scared).
Posted 12/8/2021 10:15 PM (GMT 0)

CTod said...
Hi Healingher,
I'm sorry your daughter is dealing with this. Her experience is extremely similar to my 14 year old son, The treatments and their reactions are almost identical, and we are still struggling.

He has been on IVIG for about 8 months and is just slightly improved. He has been in school, but his head pain and fatigue are still severe. He has BB, Babesia Duncani and Bart Henslae.

We are now considering Disulfram and it would be great to connect with you if possible.

Thanks,
Chris

Hi Chris,
Just wanted to mention that Healingher hasn’t been on the forum for a few years - so you may not get a reply.
Posted 12/8/2021 10:59 PM (GMT 0)
I second the Disulfiram works, but the side effects are strong and make the drug hard to take for long periods of time.

I've told my story here before, but here it goes again. Summer of 2019, literally only a day or two after Dr. Liegner released his case reports, I sent them to my LLMD and asked to try DSF. I imagine I was one of the first Lyme patients in the world outside of Dr. Liegner's patients that tried DSF for Lyme. We just copied the case report so I started at 500mg. The first 7 days I felt great. The next two months were herxes from hell. I got badly constipated around one month in. Didn't poop for like 5 days. I took some magnesium citrate in the morning and got in an epsom salt bath. In the bath I started to feel very unwell. I got onto the toilet and felt like death. Right before my bowels were about to finally empty I felt the urge to vomit. So yes, as you can imagine, I did both at the same time. This was DSF in a microcosm.

That said, after several months I was doing better. I got back into the gym and things snowballed in a positive direction. Unfortunately, COVID hit and stopped going to the gym, got off DSF around the same time and started sliding backwards fast in the coming months.
Posted 12/8/2021 11:12 PM (GMT 0)
Lymie24 your story about disulfiram is so similar to mine.

It definitely worked for me too, in fact it got me in remission for 3 weeks. Then I went down hill again.

However, like you said, it's so difficult to tolerate, it's awful how it feels. Not to mention the night terrors, wow.

I asked Dr. MR once what his thoughts were on this on his webinar and he said that if you relapse after a disulfiram treatment it might be helpful to add an antibiotic that targets the non-persister forms of Lyme.

An example he gave was Disulfiram + Doxy, I believe.
Posted 12/9/2021 11:17 AM (GMT 0)
depending on how fast the slide backwards is - it might be an indication of co-infections as a main driver of disease - rather than lyme/borrelia.

many LLMD's think Chronic Lyme is polymicrobial

and bartonella in particular is known to recrudesce rapidly after a failed or only partially successful treatment - weeks rather than months - i have experienced this myself with Bart - probably 4-6 weeks to be right back where i was - whereas lyme is likely to be slower from what i gather.

i think mycoplasma and chlamydia and even Babesia(maybe?) are all nearer to the replication rates of bartonella - than lyme also so again full relapse in weeks may be a sign of co-infections rather than borrelia
Posted 12/9/2021 8:49 PM (GMT 0)
I had not considered that Garzie! Thank you!
That's such a great point.
It kind of puts a spin on what I think happened, in a good way.
I think I have a better understanding now.
Currently treating Bartonella with Bactrim and am finding I'm herxing a lot.

Also wanted to offer a small correction to something I said earlier in this thread: the night terrors I had with disulfiram, I have them with Bactrim too now. So I just wanted to clarify that because it appears it wasn't related to disulfiram but rather the way I seem to herx.
Posted 12/10/2021 4:58 AM (GMT 0)
i was on disulfiram for almost a year, i believe it can be very helpful for those just dealing with a Lyme disease infection, but for anyone dealing with babesia, bart, etc. it will only make things worse or be a temprorary bandaid. i'd save yourself the pain and skip it, the side effects can be brutal too. the only reason id see it being worth doing is if one was sure it was just lyme disease itself being the culprit.
Posted 12/10/2021 11:06 AM (GMT 0)
yes, i also notice CNS related herx symptoms from treating with things that are active against Bartonella
for me mainly sleep disturbance, focal headache, feelings of mental fatigue etc - probably extra irritability - although hard to tell as i feel i am irritable pretty much all the time smile
Posted 12/10/2021 4:36 PM (GMT 0)
Theres like 15k in the FB groups for Disulfiram. You can count the success stories in under 30 minutes most are tagged with LymeFree. Thats not to say there are not a lot of them but considering the size of the groups it makes me wonder whats going on if its a miracle drug.
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