Second guessing DSF

Wonder if it’s bartonella.

Thank you all for the responses. Fjdrill that is exactly what I needed to hear.
WBF and Cignet I think it could also be bartonella but I've been treating it for awhile now too. Honestly don't know what to do but for now I'm going to hang on and hope for some improvement. If things get any worse I'm going to have to call llmd and schedule appointment.

I don't know if this was a herx or what but last night was horrible. Pushed to the point that giving up seemed ok for a bit. I really don't know how much more I can take. Skipping all meds except for evening rifampin today hoping for some relief.

Skinny I'm 5 11 and 175 lbs.

Thiings have only got worse. I stopped dsf and emailed llmd this morning. Office just called and I have an appointment at three today. I have to say he is extremely responsive and available.

I was feeling like giving up yesterday. Forced myself to get a shower, shave and brush my teeth at least then fell right back in bed twitching and jerking like a fish out of water. Not sure if it was a herx or the dsf or what. I started azithromycin back up in place of dasf until I talk to doc

WV Mike: From the above timestamps, I was posting just as you provided an update. I just wanted to say I'm sorry you're having such a difficult time and I hope your doctor is able to help you get stabilized and feeling better soon.

Talked to doc. Going to back down dsf to 250/day, add biaxin, and do some testing. Also some iv infusions. So that's where I'm at now. He may not be a world famous llmd bit I will say this, he cares, he listens and he is very available. I have nothing but good things to say about my dr. If anyone is looking for an llmd in Pittsburgh I highly recommend Dr D L. His staff is great too.

Thank you girlie

I think he's on there but I will email you with it just in case he's not. He's a good guy.

thanks rainy. I've decided dsf is not for me. I have felt like giving up these last few days. That's not me for sure. The dsf is making me feel horrible. I'm going back to dapsone combo that I made good progress on last year and will add fenbendazole when I stabilze somewhat. dsf is scrambling my brain making me crazy and not helping. I've never felt like this mentally before and I hope to never again. I tried. What is the best way to wean off?

Mike,

I'ld recommend going a bit longer on DSF. I went about 9 month total. Started last January 2020 and ramping up to 375 pretty quickly. Then trying 500mg in June but only stayed at that level for a month before backing down to 250 for a short time before going back to 375. I weaned off in September dropping first to 250, then 125, then stopping over a three week span. Stopped Ceftin a week later and been abx free since and doing pretty well.

After stopping the improvements were very suttle over the first two months. I still have some lingering neuro sx, and the occasional spontaneous bruising indicates I still have some active infection I'll have to live with.

Thanks everyone. I was in a bad place. My symptoms just got progressively worse on dsf. I lost ground instead of gaining. My mental state was not good at all, a first for me and I don't want to be back there ever again. I'm quitting cold turkey. Going to start the dapsone, cefuroxime, azithromycin, rifampin and plaquenil combo again. Then add fenbendazole at some point. I really wanted dsf to be my answer but unfortunately it was not.

For the first time I'm questioning if I will ever get better. At this point if I could just get to where I was last August, more days on feet than off, I'll be happy. I may have to take abx indefinitely. It sucks to think that way.

The twitching, involuntary biting, and jerking make me think it's still in my brain and will never leave. I just want to get good enough to have some sort of life again. I'm afraid the old me is gone forever. The guilt knowing what I'm putting my family through and the fact that I'm responsible for us losing our savings is also weighing on me. This has been very hard on them. I try to hide a lot of it from them but when I'm really bad I can't hide it. My wife is so strong and such a good person. She deserves better.

I can't believe that I'm unable to get over this. I've thrown so much at this the last four years. IV abx, non stop oral abx, herbals, cbd, and bvt. What's left? Maybe I'll try to get struck by lightning this summer or maybe hillbilly hyperthermia in a hot car lol. I don't know what else to do. It is what it is.

I just want some more decent time. There's a lot I still want to do in life. Lots of art projects floating around in in my head that I want to do. Time to spend with family. See my grandson grow up. I always pictured he and I would have a relationship like Parker Schnabel and his grandfather had from the tv series gold rush.

Maybe one of the new covid treatments that come out will help us? Something to hold on to.

Starting to think my life is over. If I'm being honest I feel like this is killing me. Trying to remain positive but it's getting harder and harder. Hey, on a good note at least I'll be able to eat normal again once it's out of my system. Which by the way how long will that be?

Sorry about the long rambling post but sometimes you just have to get it out and I know many of you know where I'm coming from.

Post Edited (WV Mike) : 2/9/2021 10:52:57 PM (GMT-7)

paulieinct said...
Mike:
You can stop disulfiram cold turkey with no problems. I did that myself while on a 500 mg dose. It has a long half-life so gradual weaning is not necessary.

This is absolutely not true for everyone. I understand the desire to do it, especially if you've reached somewhat of a breaking point.. but there is a risk to quitting cold turkey (similar to quitting antidepressants).

Also wrt the half-life, most of the drug gets broken down shortly after ingestion, and some of the metabolites last much longer than others.

Post Edited (potsnpans) : 2/10/2021 7:31:35 AM (GMT-7)