Disulfiram - Part 15

Disulfiram for Lyme Disease.

Studies:

• https://www.mdpi.com/2079-6382/8/2/72/htm
  
• https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4827596/
  
• https://www.ncbi.nlm.nih.gov/pubmed/31151194
  
• https://www.biorxiv.org/content/10.1101/842286v1?rss=1

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Part 1: https://www.healingwell.com/community/default.aspx?f=30&m=4143796

Part 2: https://www.healingwell.com/community/default.aspx?f=30&m=4148545

Part 3: https://www.healingwell.com/community/default.aspx?f=30&m=4154973

Part 4: https://www.healingwell.com/community/default.aspx?f=30&m=4156966

Part 5: https://www.healingwell.com/community/default.aspx?f=30&m=4158858

Part 6: https://www.healingwell.com/community/default.aspx?f=30&m=4160694

Part 7: https://www.healingwell.com/community/default.aspx?f=30&m=4163428

Part 8: https://www.healingwell.com/community/default.aspx?f=30&m=4164806

Part 9: https://www.healingwell.com/community/default.aspx?f=30&m=4166267

Part 10: https://www.healingwell.com/community/default.aspx?f=30&m=4167622

Part 11: https://www.healingwell.com/community/default.aspx?f=30&m=4168545

Part 12: https://www.healingwell.com/community/default.aspx?f=30&m=4170004

Part 13: https://www.healingwell.com/community/default.aspx?f=30&m=4181347

Part 14: https://www.healingwell.com/community/default.aspx?f=30&m=4201308

Sorry RainyCloud, I'm not sure about the Cholestryramine. I have a similar question. Some Doctors, such as MR, advocate for Modified Citrus pectin. I've seen where some people say to take MCP 30 minutes before a meal. The theory is eating forces the liver to expel bile, which contains toxins, and the binder mops them up. However, I get confused because other advice advocates for not taking any binders within 2 hours of meds. I take my meds with my meals. It's confusing. Are you running into a similar problem?

Well, I'm back on DSF. I finished DSF last summer. Since last summer I tried to do just herbs and lifestyle. I attempted Horowitz's double dapsone this winter, but stopped after day 28 when I had an adverse event that sent me to the ER. Since then I've been trying to do Buhner, but I can never build up to the recommended dosages without side effects. In addition, my symptoms kept getting worse. Tremors, shakes, chills, episodes of high heart rate and nausea, insomnia, twitching, muscle facisulations all over the place all the time, sciata pain, hip pain, shooting chest pain and chest heaviness, palpitations, burning eyes, pins and needles, joint/muscle pain....among many others.

I was really not doing well a few weeks ago, My episodes of tremors, chills, high heart rate, chest pain, air hunger etc. became more frequent and severe. I would just be lying down most the day concentrating on not dying. I decided, as much as I didn't want to, it was time to go back to my LLMD and try again.

He said it sounded a lot like Babesia. He had put together a new protocol to address all the problematic infections. It looks like this.

DSF: He wanted me to start at 25mg 2 x day but I'm starting with 25mg 1 x day due to increased level of herxing on abx only. Dosage increases every 2 weeks. Back back down in dosage if an increase produces adverse effects.

ABX:

Clarithomycin, Rifabutin, Plaquenil: Mon, Wed, Fri: 2 x day
- LLMD said the Rifabutin was a stronger penetrator throughout the body than Rifampin. I have only tried Rifampin. I felt that the Rifabutin hit hard. I don't react to Rifampin anymore. I started my abx a week before the DSF due to my condition, and the DSF not arriving till later due to being compounded and shipped. The abx alone gave me some intense herxes the first week.

Tinidazole: Tues and Saturday 2x day

Nystatin: daily

Biofilm Buster: daily

Coartem: Start taking week 2 on Sat and Sun 2 x day

Take meds for 3 weeks. Go off all abx for week 4. Continue DSF for week 4. After week 4 cycle back to week 1 and start all over again. Basically, abx for 3 weeks, and take off 1 week. Rinse and repeat.

He claims to have had success with this protocol. He also recommded me trying some IV stuff such as Ozone, Vit C, glutathione. He said he didn't think IVs were a cure, but helped towards a positive outcome. I'll prob try them since I have never given them a shot.

Bottom line, I'm back on DSF. I'm a bit scared to be honest. I associate higher dosages of DSF with an altered mental state. Not looking forward to that, but I'm going low and slow this time versus last time when I started at 500mg a day.

Post Edited (Lymie24) : 6/1/2021 3:54:08 PM (GMT-6)

hi Rainy

i am no expert but in my limited reading on cholestyramine - its a ion exchange resin - that basically means it grabs and bonds to bile acids ( and other things )and the things that are attached to them, like toxins, in the gut so they get carried out in the stool - rather than them being re-absorbed as is normal - as the body normally recycles most of its bile acids.

the thing is TUDCA is actually a bile acid - its a special sort of bile acid - in that - as i understand it - its more water soluble - and it has some interesting systemic effects which are believed to be linked with this unusual property - but ultimately it is still a bile acid so is expected to be absorbed by cholestyramine also.

this means that although it is not harmful to take the two together - it would be expected that doing so would reduce the effectiveness of the TUDA - especially its systemic effects.

it may be possible to minimise the absorption of the TUDA by taking it well apart from cholestyramine - as is usually advised with medications etc. i expect this would need to be a good deal of separation though - 4hrs or more - but both typically need to be taken regularly for best effect - so may be a little awkward taking enough of each of them regularly enough.

perhaps cholestyramine with breakfast and dinner - and TUDCA lunch and before bed - or some such similar scenario

there is a decent contra indications / interaction checker here - which gives a brief version of the above ( enter cholestyramine in the interactions search box half way down the page )
https://go.drugbank.com/drugs/db08834

but bear in mind - very often information on interactions is sparse and incomplete - and often the mechanisms by which either of the drugs make their effects are unknown or only theorised - and therefore at present we only have guesses at how they might interact - so its a guide for what to look out for and reasonable measures to take - but not absolute fact

Hi Garzie,

Thank you so much for your help. It really means a lot to me.
That's so interesting what you wrote and I learned a whole lot from it.
I'm glad that it's the TUDCA that might be affected by the CSM and not the other way around.
As I was primarily concerned about the CSM not working.
That is not to say the TUDCA isn't important, because I really do need it for my liver.
I will take it apart as you suggest, I think that is a great idea.
Thank you again and thank you for the link!

RainyCloud said...
Hi Lymie24,

Those are quite some experiences you've had with DSF.
Sorry it has been so hard for you.
I feel like you have a lot of the same symptoms on the DSF as I have.
I don't have neuropathy on it, but I do have all the other things you mentioned. Especially the mental alterations if I go above 250 mg.
I'm glad I figured out what the cut-off dosage for me is, but I'm a bit bummed out that I can't work up to 500 mg.

Yes, there's lot's of information available now which is great.
What are you going to do to mitigate the copper issue?

I'm not on DSF anymore, but I want to take it again.
My plan is to work up to 250 mg and stay on that for maybe 6 months.
So sorry to hear things come back when you stop.
Do you think another round of DSF might help?

The CSM gave me my sense of smell back which is nice, but I had expected more from it.
Maybe I need to be more patient though, and I'm still taking it and will continue to take it but I'm sure you know how it is to get impatient with these things.

The Vitamin C injections, I order online and then buy insulin needles online too and then do a Subcutaneous injection. It sounds more complicated than it is. It helps with herxes, that's the main benefit for me.
But on the same level as liposomal glutathione, which works but isn't perfect either.
Also, the Vitamin C make your skin look nice, so thats good.

I really hope you will get back to healing so you can go to the gym again!

I do think it it will help. Honestly, because of my regression I don't think I have a choice. I'm doing the protocol I listed a few posts above. In only a week and a half I have noticed some improvements in neuro and cardiac symptoms along with herxing. This is confirmation, to me, that I still am dealing with infections. I've seen some success stories from those who were able to stay at their target dose of DSF for several months. That's going to be my goal.

I'm also taking Liposomal Gluthathione and curcumin per Dr. MR's recommendations. As you said, it's tough to tell if it's making a difference, but I'm going to give it a shot for awhile. My other go-to detox methods are clean diet, IR sauna, salt baths, exercise when tolerated, and activated charcoal.

Thanks for the kind words! I hope your next round of DSF produces positive results. I'll try to remember to update my progress in this thread every now and then.

potsnpans said...

RainyCloud said...
What are you going to do to mitigate the copper issue?

I took zinc with my morning dose of DSF- both on empty stomach.

Hi potsnpans!,

I'm planning on taking zinc with DSF. Any reason why you take both on an empty stomach?

Lymie24: Thank you! I'm glad you had confirmation, it's always hard when you don't know what you're battling. And yes, I totally understand about not having a choice, that's where I am with my treatment too. Most of my days I feel too fatigued to even open my eyes, I tried so many things that haven't worked, so hopefully the DSF will finish the job this time.

potsnpans when I take DSF on an empty stomach I get that garlic taste, whereas if I eat I don't. I'm not sure if that means anything but it seems like it works harder on an empty stomach indeed.

I’ll be a year post disulfiram in October. Im doing great! This summer I have had a breast reduction, dental implant surgery with bone graft, Pfizer COVID shot, been on clindamycin with the surgeries, and I’m doing great! I’ve had to take it easy with the different procedures but no relapses! My biggest thing was a return in migraine attacks after my reduction tied to the fact that I couldn’t get out and exercise and my sleeping was awful because I’m a side sleeper and had to sleep on my back and propped up for a long time. Now I’m doing much better about 2 months out from that. Disulfiram and MOTS-C were game changers for me. I don’t really think much about lyme anymore. I get bouts of health anxiety and really had to examine my beliefs around the COVID shot but through prayer and a slow and gentle shift in my mind set, I’m starting to be able to let go of some medical trauma. It’s not an easy road on that front, takes time and patience!
But I can say I feel great still!

RainyCloud said...
That's so great to hear you are doing good ChickNorris!

Do you mind me asking how long you were on Disulfiram and MOTS-C for?

Could you tell a bit more about the MOTS-C? Thank you!!

I was on disulfiram full dose (250mg) for 4 months, I spent three months tapering up slowly. I started at 32.5 mg or somewhere about there. I inched my way up with my drs guidance and compounded dsf.
MOTS-C was a treatment a few months after I finished the dsf. It was just 1000 units injects sub-q once a week for three weeks. So just three doses. It cleared up my lingering chronic fatigue like magic. I had had previous success with peptide therapy for other issues so my dr was hopeful I’d have success with this too. And she was right! I went from still sluggish to working out daily with no post exertional malaise, no crash! I slowly worked my way up because I was terribly deconditioned. But I found that once I was able to get moving daily, I ended up in a positive feedback loop. Better sleep quality, less migraine attacks, more energy, less aches and pains. I think a lot of our lyme symptoms and POTS and all that is somewhat deconditioning because of the CFS component. We can’t move our bodies, we need to rest, but it makes some things worse. It’s tough!

My husband is interested in
MOTS-C

He found a source on the internet.
Norway Direct Peptides.
Can he inject it himself?
Sub q means just under the skin?

What are the risks/drawbacks?

So you need a prescription - dang!

Also I’m in BC Canada - so can’t use that source.

I think my husband found a source on the internet but not sure it would be safe.

RainyCloud said...
Hey all, any updates?

It's been a rough road for me on DSF so far. The protocol I posted about earlier in this thread didn't work for me. It was too aggressive. I felt HORRIBLE. Like suicidal bad while trying the protocol. I don't think my body is really accepting of aggressive oral abx therapy anymore. My gut was a mess. My doc took me off the abx but I've been continuing with the DSF. DSF alone has been a rough ride. I've had a few times where I have to come off it altogether for a few days to let my body detox a bit. Today I'm moving up to 200mg/day. In addition, I've recently added Cryptolepsis and yesterday ordered some Hottunyia. Tinctures are not based on alcohol. So far, I've had mild improvements. Of course, as anyone who has dealt with this crap for some time knows, the improvements vary day by day. Some days I feel worse as ever. Some days I'm doing a bit better. One of the ways I can tell it is working a bit is I am able to exercise with more frequency and intensity without a guaranteed subsequent flare up the next day.

My doc wants me to add in some IV stuff, ozone, Vit C, Meyers, Gluthiaone, to see if that helps with symptoms.

That's super interesting about the peptides. Maybe that's something worth looking into. I agree with ChickNorris about the POTS. When I am able to be more active the POTS symptoms drastically reduce.

Lyme24

just in case its helpful - if you are sensitive to alcohol

cryptolepis can be taken as a tea - as long as the water is acidic it works well ( some vinegar or lemon juice in it is perfect - perhaps 2 teaspoons per cup)

houttuynia can also be taken as a tea or eaten as a powder - or taken in capsules