My turn starting Disulfiram

Well, I'm weaning off my current ABX protocol of Biaxin, Bactrim and Malarone, and start Disufiram this weekend. Starting dose is 1/4 pill once a day for a week, then ramp up by 1/4 at a time every week. I plan to treat for 4 months.
Had no issues filling my script at a local CVS.
I continue with SFN testing with Dr Novak in Boston over the next two months. By then I should have a better handle on next steps, or that this is as good as it gets. Also may retire this summer when I get on Medicare. Longevity doesn't seem to be in my cards after recent heart attack.
I'll try to post weekly on progress.

Post Edited (tickbite666) : 1/22/2020 6:45:47 AM (GMT-7)

My ramp up is only my LLMD recommendation. If I herx too bad I'll back-off and slow down. My LLMD has 45 other patients on DSF with most having fatigue as their worse sx. Most of these patients are long time Lyme treaters who have also had relapses after weaning off ABX, regardless of the amount of Buhner herbal intake.

I don't drink coffee for past 10 years, and BP has been real good for a long time with 50mg Atenolol once a day. I have a cuff at home and test regularly. I even took my BP the Saturday after two mild heart pain episodes (went to ER next day after a more severe attack), and it was within my normal BP range.

I also heard to stop green tea, no fermented foods, and no vinegar which will be hard cause I eat salads almost every day.

been substituting lemon juice for vinegar whenever I can. For salads I whisk it with olive oil and seasonings, and you could add honey too.

Smoked or cured meats should also be off limits. There was a study where mice (or rats?) developed tumors at an alarming rate when fed nitrates while on DSF

Glad your blood pressure has been pretty stable

Heart attack......oh man. Think lyme possibly had something to do with that? Another thing that comes with age (terrific).

X'ing my fingers for ya.

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My BP was up during treatment, but so was my anxiety and heart palps / flutters. LLMD had me do the heart video/imaging thing (??) twice at the hospital, it looked good.

potsnpans - thanks for tips on homemade salad dressing, and warning on eating smoked and/or process meats. I have found beef jerky to be a good go to snack rather any anything with carbs. I'll have to scratch that off my list now. 8*(

Astro - It's is quite possible that the heart attack was due to Lyme and/or excessive abuse of ABX combos for the pas ten years. But Lyme usually cause cardiosis (sp?), and I had a 90% blockage in LAD requiring an emergency stint. Yes... we are all getting older I have to admit.

102xxxxxx56n - I was considering 1/4 pill every other day for the first week.. maybe I'll take your advice. I've been treating for a real long time with enough combo ABX protocols to kill a horse, and plowed thru anyway. Low and slow is not in my vocabulary. With my long term treatment my Lyme load should be pretty low, and I am at around 90% healed, except for lingering peripheral neuropathy and other neuro sx which may be permanent damage. But my SFN evaluation should help decide next steps. Even my first appointment with Dr Novak he recommended trying DSF... very unlike your typical research neurologist.

To Girlie and the rest of you well wishers... many thanks

I have been taking arginine + citrulline throughout treatment and have not noticed any problems. Do you remember what the reason might have been? I think both DSF and aginine can potentially "wake up" dormant viruses...

tickbite666: Do you know if your doctor has other patients with SFN on DSF?

Good luck with it and listen to your body. I’ve not been updating on the forum for a while as I think that there are daily ups and downs but this week we have seen a turning point.
To summarise my son added disulfiram to his abx protocol at the end of November, gradually increasing the dose every 2-3 weeks depending on his reaction. In the last week we have seen much more than ‘fleeting glimpses’ of him and days when he is his normal self. Even he is reporting feeling better - to the point where yesterday he felt he had turned a corner. He still feels fatigue but not on the same scale - if he looks after what he’s eating and rests then he can cope with it. He’s up to 200mg daily and according to the weight calculation (kg x50/12) could aim for 300-350mg max, and for 8 weeks which would take him to around the end of April. We track his daily symptoms (and seen no signs of neuropathy) and in the last couple of weeks these have been few. Some days he has reflux and stomach issues but he is still also on two abx so these could well be the culprit for those (despite a support protocol of zinc, vitamins and probiotics). We next see his LLMD in a couple of weeks.
I think the next hurdle might be coming off abx to see if he can maintain and we’d like to discuss that with his doctor. But symptom wise he hasn’t reported any in a couple of weeks. He used to report foot pain, shooting pains (bartonella?). He still describes vision fatigue - difficulty in switching depth perception but it is reducing. He has confirmed borrelia and bartonella and we know disulfiram might not hit Bart (hence the abx).
My best advice is monitor your body and if you feel ready to increase dose slowly then do that but not quicker than fortnightly.
Everyone is so different and I’m coming to think that this is the case for all treatments hence it is so so difficult to find the one silver bullet for all. It’s certainly a dance. But if it comes together for you then it’s a beautiful dance when you master it.

Started 1/4 pill of DSF yesterday am as planned. So far so good, just some minor fatigue in afternoon and evening. I'll target Wednesday am for second dose, then another on Saturday if all goes as well as expected.

102xxxxx56, I've seen SN in Cumberland since March 2010. Don't think my long term treatment is the result of her ability, I made lots of progress in my first five years, just can't find the right remedy to beat this without having a relapse soon after weaning off ABX. At least now that I've weaned off most of my Buhner tinctures without any noticeable set backs I can spend that money somewhere else.

tickbite-I started on it about 3 weeks ago. The biggest issue I've had has been days or hours of debilitating exhaustion. The exhaustion comes with lack of brain function. I've seen a couple of articles in the last few days that state increasing thiamine intake will help with side effects. Here is one https://www.drgonzalezmd.com/relieving-disulfiram-for-lyme-induced-neuropathy-other-side-effects/

In addition to the detox supplements my LLND has me taking I've been drinking a detox tea and I think that has helped a lot. A few fingers on my right hand swelled when I started the disulfiram. I purchased Get Clean by Republic of Tea based on the ingredients. I figured it would taste awful and I'm not a big fan of tea anyways. It's got a pleasant taste and it's helping a lot. It has organic roolbos, milk thistle, indian sarsaparilla, dandelion,and a few more ingredients.

Post Edited (jrpsf) : 1/27/2020 3:42:36 PM (GMT-7)