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Friday, February 21, 2020

DSF, dose, activated charcoal managing the Herxheimer reaction

My patient is feeling optimistic. The best she has felt in years.  Disulfiram/Antabuse, AKA DSF is the game changer.  She takes a tiny amount.  I prescribed 10 mg compounded capsules, a very low dose. She started with one capsule every 4 days and has increased the dose to 2 caps, 20 mg daily. She reacts to this small dose, significantly.

She feels OK the first day of disulfiram pulse. The second day she is assaulted with a variety of symptoms: fatigue, brain fog, muscle/joint pain, shooting pains, muscle twitching, head pressure, etc. She feels increasingly better over the next 4 days and the cycle repeats.
She is happy. No longer depressed. Really happy.

She tells me she manages the second day Herxheimer reaction with doses of activated charcoal.
I’m naturally skeptical.  Everything has to make sense. Scientifically and logically.

Herxheimer reactions are modulated by the immune system, something like a cytokine storm. This is all very complicated so let’s not get lost in the weeds. These cytokines are a complex set of proteins which regulate activity of the immune system (traffic the immune system). When Lyme is killed cytokines and the immune system are kicked into high gear. This leads to inflammation, too much inflammation, a bad thing. We need to reduce cytokine activity and/or cytokines themselves.

It’s exciting to learn that activated charcoal is incredibly effective at binding cytokines. When blood is filtered through activated charcoal cytokines are removed.

How does that help us? Blood has to be removed from your body and filtered. Not likely. Activated charcoal is the “universal antidote” and good for reducing bloating and gas. It stays in the gut. It does not get into the blood where cytokines live.

Ah ha. Like cholestyramine, it interferes with the natural recycling of bile (from the liver) to the intestines and back to the liver. OK. And..

A published study looked at oral charcoal in mice loaded with malaria and treated with an intravenous antimalarial drug.  Charcoal reduced brain swelling and reduced key cytokines. Gut only charcoal did all this. 

Cytokines may be cycled through enterohepatic pathway and processed through the intestines.  Charcoal may be there waiting to gobble them up. (Conjecture on my part).
I finally have an idea why Wellchol/cholestyramine lowers C-reactive protein. CRP is cytokine driven.

Normal functioning of the enterohepatic pathway impacts the concentration of medicines, toxins and other substances present in serum. I discussed this in another post. Messing with the enterohepatic re-circulation of bile can do good and bad things. This is a very complex and vital part of our physiology.

The best treatment for Herxheimer reactions may be antioxidants (oxidative stress) and activated charcoal.

I do listen to my patients and believe what they say. I worry that many desperate patients are taken advantage of by various scams. I worry about overpromoted nostrums, a mass placebo effect.  Think-- The Emperor’s New Clothes.

My patient today snickered at my skepticism.  I am humbled.  She was right and I was wrong.

I still want people to stop think Herxheimer reactions are caused by toxins and cholestyramine/Wellchol and charcoal remove toxins. Speaking of  toxins specific to the Herxheimer reaction. This does not make scientific sense. (I am not saying other toxins are not removed, I am speaking of the mechanism of the Herxheimer response).

Yes, the best starting dose (and ending up dose) of disulfiram is variable.  Starting low is a good idea. 10 mg seems to be a good starting place, for sensitive patients. Options include 25 mg, 62.5 mg and others generally are well tolerated.  Gradually increasing the dose likely mitigates damage caused by an overly eager immune system.

Take home points:  DSF, start low.  Herxheimer reactions -- antioxidants and charcoal.
Also, if you had a bad reaction with a higher dose of DSF you may do well with a small starting dose.

21 comments:

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Unknown said...

Doc - what are you seeing in patients with bartonella, as regards DSF? Does it kill it, or just piss it off? Bart is so inflammatory....

Curtis said...

I seem to finally be turning the corner on Lyme Disease due to DSF. I can’t express how grateful I am to you Dr Jaller! Makes me so emotional just thinking about it! -Curtis

Curtis said...

Here’s a post I put on Facebook about my experience with it:

Feeling like I'm just starting to turn the corner on this medication although I've had that thought in the past. It's been a crazy ride. 13 months at 500 and 375 with the last 3 weeks at 250. (I also did it for a month at 500 back at the beginning of 2017 though I didn't stay on it long enough to start herxing and just thought it wasn't doing anything) WOULD NEVER RECOMMEND THIS DOSING FOR SOMEONE ELSE but my baseline symptoms are so high I was desperate. This time around I started with non-enteric for the first 3 months at 500 starting in Aug 2019 followed by enteric for about a 10 months at 500 and 375 and then back to non-enteric the last 3 weeks. Had to take two month long breaks because my herxing patterns were so intense (psychosis, derealization, panic attacks, depression, mania, profound confusion, etc). I had one panic attack mixed with pain and tightness in my diaphragm that lasted for a week and left my diaphragm sore for a week afterwords. Herxing patterns started out in very long durations of up to two weeks and now last for a few hours. Strangely the best I've felt throughout the whole process was 5 weeks in for half a day. After that good days seemed to repeat every two weeks but receded over time. But I didn't realize there was a much longer timeline at work and I've been slowly getting better without realizing it. Probably 5% to go before full remission though I'll probably stay on it for a while before tapering off. Baseline symptoms are probably too long to list but I've had a constant headache without interruption for the past 25 years, 15 years at a very low level and then the last 10 at a very high level, and then a bunch of autoimmune and autonomic issues including POTS/air hunger, neuropathies, constant ear infections, neck pain, sleeping issues, brain fog and serious memory problems, pernicious anemia, back pain, knee pain, strange things like hair calics that start and stop on the disulfiram, and a ton of mood symptoms. Also had a strange bone pain in a finger for about a month at the very beginning of treatment that I went and saw a specialist for but haven't had that again since. 46 years old. Weight 175. Positive for Lyme via Igenex criteria and positive Advanced Lab culture after a year of IV antibiotics but never CDC positive. Makes you wonder about Liegner’s 30% remission number. It’s probably the case that a lot of people aren’t treating long enough. Have only dipped into this forum gingerly, haven't used facebook much besides looking at these lyme disease groups, but I'm eternally grateful for a few of the kind words that urged me on.

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Florence said...


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Unknown said...

Dr Jaller - Since I received the J&J vaccine I have been in and out of the hospital 4-5 times. Post vaccination, 4 days of severe headaches followed by 3 weeks of milder headahces and ED. After this time, I felt perfect for about 2 days, then, my symptoms changed and became upper GI, heart palpitations, crushing headaches (seizure -like headaches), non functioning bowels.

I have had numerous tests (cardiac, CT, blood, xrays .....) all came back normal. No one understands nor believes me.

I was blood tested for Lyme (an am in the woods frequently and in tall grass) twice and the results came back negative. I do not feel fatigued nor do I have joint stiffness. I am extremely active and in excellent shape, but my nervous system seems off - I need an expert to diagnose my condition.

I need help quickly - should I start taking the Doxy ? I don't know for sure if I have Lyme.

I have a prescription of Doxy but have not yet taken it.

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