Disulfiram any updates

Here’s recent threads on it

https://www.healingwell.com/community/default.aspx?f=30&m=4014137

https://www.healingwell.com/community/default.aspx?f=30&m=4070830

Sebreg- what symptoms did you flare up with and how much were you taking? The people I'm following that are taking it aren't feeling much of a herx at all yet I keep reading on here and on Facebook posts of people that can't even get past a low dose of 50mg. It seems all over the map with how people handle this. Maybe it just depends on what your main infection is. If it's Bart you may not feel much or have much improvement but Babs and Borrelia you will?

In the 3 cases recently published by Leigner, there was success without any relapse in 2 of 3 cases. The 2 success stories both took 500mg once daily, from the start of treatment. The patient who had his symptoms return was the pt that could not tolerate the 500mg daily and had to work his way up to that dose over about four months.

Obviously it is a small sample but I wonder if there is a benefit to hitting it hard and full dose without a low dose or pulsing phase first?

How much damage is being done to the brain with extreme herxes of crippling headaches and fatigue? And is it worth the potential damage if cure is the reward? If the pt is cured, there is no more chronic, low grade encephalopathy and we are not herxing chronically on and off as we treat and re-treat. That is perhaps worse for the brain than one violent and prolonged herxheimer. I am thinking if u can get the time off work, just go all in...500mg daily. I will be starting in September.

Ya I usually do 3 week on 1 week off the abx protocols. With all the antibiotics my doctor always has me work my way up to the goal dose. With the disulfiram he has me starting at 125 mg and going up 125mg every 3 days till I get to 500mg. Once I get to 500mg then my week 1-3 on abx starts. Not real sure why he has me doing this one every other day, possibly cause I’m also on rifabutin amd Zithromax. I know there’s a guy on here that couldn’t tolerate the 500mg so we’ll see how my body takes it.

Note: doctor anticipates me being on the disulfiram 2-3 months. From time of tick bite to start of treatment was 11-12 weeks. Iv been treating for 8 months.

Not sure if any of this plays a factor in what my doctor recommended as protocol. Hopefully i will have some positive feedback for others to possibly look into.

ToddPaul said...
Sebreg- what symptoms did you flare up with and how much were you taking? The people I'm following that are taking it aren't feeling much of a herx at all yet I keep reading on here and on Facebook posts of people that can't even get past a low dose of 50mg. It seems all over the map with how people handle this. Maybe it just depends on what your main infection is. If it's Bart you may not feel much or have much improvement but Babs and Borrelia you will?

So I was supposed to start at 250mg, and work up to 500mg. I took 500mg along with my coartem pulse for 3 days because I figured hey let's trial it out, see if there is any response. I don't know why I did that, usually I'm so cautious, but for whatever reason I had it in my mind that it wouldn't hit me hard...

Like I mentioned, it hit me super hard, which is quite a feat given that not much of anything draws out a strong herx anymore (think I have culled all the low-hanging pathogen fruit if you will).

Symptoms it flared: swelled my lymph nodes behind ears (which have been chronically swollen throughout my illness but has gradually improved with effective treatments, especially babesia treatments), sweats, anxiety, crushing nonstop headaches, back of head pain, some insomnia, inability to concentrate, very strong fatigue. All my classic babesia symptoms. But I did not get much air hunger though, I think that symptom is finally a bit more in the rearview.

I think it is exactly like you say, for those that respond it is probably hitting pathogens that are particularly susceptible to this drug. I underestimated its potential against babesia, which I am almost certain is what it hit square in the mouth in my case, like few other drugs have (coartem has been an effective one for me, but some patients with babesia respond to it and others don't, maybe has to do with species/strains each person is harboring and their particular susceptibilities to specific drugs).

Sebreg- thanks for the response. Sounds like it really hit hard for you.

Onlyname- Be careful with starting this at a high dose. There's a guy named Jory on Fb that posted on Dr. H's post about Disulfiram that ended up in the ER with severe cardiac issues from starting at 500mg. His blood pressure spiked to 212/176 and heart rate went up to 169bpm. He claims he doesn't drink so it wasn't an interaction with alcohol. He's now going back on only 50mg. and will move up slowly increasing it by 50mg. every week. Sounds like maybe he had some kind of cytokine storm from too much die off.

I have also heard you should watch products that have alcohol in them that you might use. They can react with Disulfiram.

Thanks. Tried to watch it but was too late. Will try link again on pc when I am home but not sure if archived.

Any takeaways?

I agree. Few million for him and few million for Zhang and his band and we are turning the tide. Incredible what can be done when those in charge of research do not hate the patients.

Everyone involved in the Lyme file for the IDSA, including their upper directors who appointed and kept them year after year, need to be fired. Maybe they will not do that for fear of wrongful dismissal suits, bad press, or a gateway to patient suits. They could just dissolve their positions entirely. Come on HHS....dissolve all their positions...very harmful use of tax dollars. The Cohen Foundation has got this one.