Started on this about week ago. doing 1/2 tab every 3 days/ Never really had a noticable herx until this. Geez. Anyone else doing this?
Posted by Bartenderbonnie (Member # 49177) on :
Are you also taking traditional antibiotics for an optimal response?
I have not tried Disulfiram, hopefully someone will post about their experiences.
Posted by Charles12 (Member # 24729) on :
It got rid of whatever residual Lyme infection I had.
I think everyone should take it.
Posted by overlyme (Member # 43455) on :
not available right now where i live
Posted by Lymetoo (Member # 743) on :
Coach .. I hope you took a look at the thread Bonnie posted. There is a lot of good information there.
Best of luck!
Posted by Legolas (Member # 45737) on :
To all the people taking disulfiram:
DO NOT COMBINE DISULFIRAM WITH HYPERBARIC OXYGEN!!!
I started diving with no symptoms and 1 hour later my feet were burning like hell. I could barely walk when i got out of the chamber because of that instant neuropathic pain.
The hyperbaric oxygen causes oxygen radicals which in combination with disulfiram cause nerve damage.
It's now a couple weeks later and i largely recovered from it though. But don't make the same mistake!
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by overlyme: not available right now where i live
Have you tried a compounding pharmacy?
Posted by Lymetoo (Member # 743) on :
Thanks for warning everyone, Legolas!
Hope you recover soon!
Posted by nefferdun (Member # 20157) on :
I took it for 49 days, 41 days at 250mg. It was extremely difficult to tolerate. I was so exhausted I could hardly stand and slept 12 to 15 hours a day. I got air hunger so severe I felt like I was suffocating.
I could not understand anything. I told my husband to speak very slowly and simply so that I could grasp his words.
When I began getting pin like stabs in my feet, hands and face I quit. Neuropathy is one of the serious side effects people can get.
Doctors now recommend people go low and slow. It is not thought to kill bartonella so if you have that it will flare unless you take something else. When I explained my experience to a LLMD he said it is thought to break down biofilm causing the Bart flares.
I thought my primary problem was bart. Now I believe I also have Babesia. Two weeks after I quit DSF I started Bactrim DS and Biaxin which I could not tolerate before. I had rapid improvement for a couple of weeks. My energy improved and my headaches went away.
Since then though I have gotten worse. I am dizzy most of the time. I did a round of Coartem and will start Rifabutin tomorrow.
I may try DSF again but much lower and slower.
Posted by lymenotlite (Member # 33166) on :
Brussels posted this European site in 2018. I do not think it was available in English at that time but now is: http://www.retzek.info/
In all honesty i have not really found any evidence that this is a so called "game changer"...
A significant portion of people who take it do very badly on it. Others seem to have some benefits but also severe side effects. And only a minority seem to get cured by it (but these were definitely not the highly sensitive lyme patients that seem to to badly on any treatment). Typically the people who get cured are the ones who were already doing sort of good on antibiotics, but they relapse once they stop. By taking disulfiram they can get over this relapse. At least that is what i make of all the case reports.
So if you are one of those highly sensitive patients, dont go and put all your hope on this.
Posted by S13 (Member # 42830) on :
quote:Originally posted by lymenotlite: Brussels posted this European site in 2018. I do not think it was available in English at that time but now is: http://www.retzek.info/
They are very common on dark field microscopy slides. But they should not be mistaken with bacteria inside red blood cells.
Posted by lymenotlite (Member # 33166) on :
S13, thanks for that info.
Posted by Kristyn (Member # 51857) on :
Hey guys,
Waiting on my Igenex results for Bartonella but my LLMD had me put this med on hold pending results. I have been in treatment for almost 14 months now with no improvement and she says the Disulfiram goes after "persister" cells that aren't touched by abx.
How does it do with Bartonella? I've had some ppl tell me it makes it alot worse
Posted by Garz (Member # 52095) on :
quote:Originally posted by Kristyn: Hey guys,
Waiting on my Igenex results for Bartonella but my LLMD had me put this med on hold pending results. I have been in treatment for almost 14 months now with no improvement and she says the Disulfiram goes after "persister" cells that aren't touched by abx.
How does it do with Bartonella? I've had some ppl tell me it makes it alot worse
it's not really known if it's bacteriocidal to Bartonella or its persisters as far as I have been able to find out. however, persister cell research is still in its infancy for most of the co-infections.
what seems to be consensus within the LLMD community is that Lyme with Bartonella is simply much harder to treat than other combinations. as is Lyme with babesia. reference Dr H etc.
Dr H writes that he finds his most resistant cases of most often co-infected with Bart or babesia
anecdotal reports from some lyme/bart patients taking disulfiram note what they interpret as increased Bartonella symptoms part way through treatment.
one theory is that this is Bartonella "waking up" or "flaring" due to Lyme spirochetes being killed by the disulfiram.
but very strong herx like symptoms are also common on disulfiram and these are often neurological in nature so there is a lot of similarity between the herx and what are regarded as Bartonella symptoms. disulfiram is also known to cause neuropathies as a side effect.
some LLMD's treat this bart "flare" with conventional antibiotics - which may seem to have benefit - but its wrth bearing in mind that many conventional antibiotics including tetracyclines and macrolides are highly anti-inflammatory in nature and could simply be treating the inflammatory herx symptoms.
in addition: although many of us understand what a herx like reaction feels like from personal experience - science does not yet really understand what mechanism long term herx like symptoms are caused by.
so its very hard to unpick this puzzle till more research is done.
my thinking is if you have tried less toxic hard to tolerate antibiotics rigorously and are still ill then it may be worth trying these higher risk alternate antibiotics like disulfiram and dapsone, but only while taking the appropriate precautions and countermeasures as there seems to be significantly more risk of harm.
(Editing out last name of Lyme doctor per Lymenet T&C)