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Disulfiram - Part 9

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Posted 11/24/2019 4:01 AM (GMT 0)
Hey guys,

I just took 40mg of idubilast, I'll report back in a few hours, if I'm still alive lol.

My inflammation is pretty bad due to forgetting turmeric curcumin today, so this will be the perfect time to test idubilast.
Posted 11/24/2019 5:13 AM (GMT 0)
Alright I'm back, I am feeling physically relaxed after taking my first dose of ibudilast, which is nice.

It feels very similar to turmeric, so it's nice to have.

Also breathing seems to be easier.

No side effects.
Posted 11/24/2019 6:21 AM (GMT 0)
RainyCloud - is pain part of your symptom package
(Joint/muscle/bone/nerve)? You did mention inflammation

If so - have any of those symptoms flared on the dsf?
Posted 11/24/2019 8:21 AM (GMT 0)
Hi Girlie smile

Fortunately pain isn't part of my Lyme.
When I'm referring to inflammation, I mean more like, sudden flaring neurological fatigue/fog, entire body redness, body heat/warmth etc.
It goes away with the turmeric.
I do get muscle soreness when I'm herxing, specifically in my upper legs, which has happened on dsf.
Posted 11/24/2019 4:59 PM (GMT 0)
I stayed at 62 and 125 both for three weeks. and waited 6 weeks to get to 250mg

and this is my second attempt
Posted 11/24/2019 5:39 PM (GMT 0)
neither one of you guys are doing the 5 days half life (it's technically 5, but more like 7-8 days) of a dosage to get to the load up, so you're not actually accurately getting any gauge on what your tolerance is. don't be surprised if something bad happens.
Posted 11/24/2019 5:56 PM (GMT 0)

UnsightlyCignet☄️ said...
oregonhay,

I get that. I don't want to overdo it either so I'm definitely not going to be going up to 250mg any time soon.

I'll probably go up to 187.5mg next. My target dose, given my low weight is going to be 375mg.

I don't have a job, I live on welfare so I'm just making the most of my free time. I haven't really had any herxing and this is me on day 6.

I've been feeling clearer and clearer, less head pressure. Clearer thoughts etc. More sleep. Less depersonalisation as well which is interesting.


How much do you weigh if I may ask?
Posted 11/24/2019 6:33 PM (GMT 0)
what is your existing lyme bacteria load? I was "basically cured" and told to stop antibiotics and continue herbs and "that's that." the current limit of our understanding of the disease. I was 8/10, functional, able to interview and got a few jobs.

the disulfiram put me back at 6/10 or 5/10 but if I stop I feel perfect 9/10 or even better

so if I was at 8/10 and had to stop DSF, and then start it again, and had to wait 6 weeks to get to 250mg.. and also I am 6'1" 220lb (but was 200lb when starting)

and my ability to process detox or toxic load was zero or total crap. my pathways were clogged and useless. I had to gain 20 pounds to deal with toxins, my last line of defense.
Posted 11/24/2019 6:33 PM (GMT 0)
Hi disulfigang!! <-- (see what I did there?)

So good to hear you're doing ok UnsightlyCignet!

I'm also glad the Zinc is helping you!

I have had no tingling yet but that's interesting what you said about the nerves regrowing.

Stay in touch friend.
Posted 11/25/2019 2:34 AM (GMT 0)
it works but you didn't take the advise and wait two three weeks between increasing the dosage. it is unfortunate but I pointed this out every step of the way. Just pointed it out again two more times above. it is very frustrating to see people ignore everything I have to say about waiting 1) 5-7 days to get to the half life load-up dosage before doing anything, 2) then wait another 2-3 weeks 3) be careful and wait until one life cycle (<28 days) THEN if you can, increase the dosage. Just take it at 62.5mg for 3 weeks, 125mg for 3 weeks, 250mg for 3 weeks, and 500mg for 8 weeks if that is to much to understand...
Posted 11/25/2019 3:42 AM (GMT 0)
Jova: It matters how you take it! If you were having trouble tolerating it, you needed to take less!

Take less for a longer period of time and only increase after a minimum of 2 weeks. You would never treat a traditional antibiotic this way, rifampin for instance, for fear of pathogens developing a resistance. But it looks like resistance will not be an issue with this drug, so you can go as low and as slow as you need too!

Dr. Kinderlehrer said...
...I suggest starting with low doses, 62.5 mg or 125 mg every three days. Patients who appear fragile, inflamed, or poor detoxifiers start as low as 15 -25 mg every week, which is available at compounding pharmacies.

https://www.lymedisease.org/disulfiram-kinderlehrer-2/

He also talks about enteric coatings and zinc to help with side effect of neuropathy.

Don't throw your leftover DSF out just yet!!
Posted 11/25/2019 4:09 AM (GMT 0)

oregonhay said...
it works but you didn't take the advise and wait two three weeks between increasing the dosage. it is unfortunate but I pointed this out every step of the way. Just pointed it out again two more times above. it is very frustrating to see people ignore everything I have to say about waiting 1) 5-7 days to get to the half life load-up dosage before doing anything, 2) then wait another 2-3 weeks 3) be careful and wait until one life cycle (<28 days) THEN if you can, increase the dosage. Just take it at 62.5mg for 3 weeks, 125mg for 3 weeks, 250mg for 3 weeks, and 500mg for 8 weeks if that is to much to understand...

You’re actually right. I took time off and came back and went straight for the 500mg and didn’t have as much benefit as I did as 250mg.

Doctor said now to drop back to 250 for a couple weeks and then increase the dose again.

This is a big time battle of finding the right balance and working with it.

@Jova

Trust me. I’m where you are, but I did see improvement. Going too hard too fast is the wrong approach. You have to be patient. Stupid on my part to do it but it’s okay my LLMD said don’t start from scratch, just go back to half which was the right dose for me and then improve gradually.

I hear you Oregan. I know you’re frustrated but we’re in the battle together. We gotta keep fighting together!
Posted 11/25/2019 7:06 AM (GMT 0)
Today is day 10 of disulfiram.

Day 1 - November 16: 62.5mg
Day 2 - November 17: 125mg
Day 3 - November 18: 125mg
Day 4 - November 19: 125mg
Day 5 - November 20: 125mg
Day 6 - November 21: 250mg
Day 7 - November 22: 500mg
Day 8 - November 23: 500mg
Day 9 - November 24: 500mg
Day 10 - November 25: 500mg <---- today.

I'm doing good.
Still feeling that bit of extra energy.
Hoping it will increase even more.
Brain fog very slowly getting a bit better too.
I seem more talkative and more into conversations.
Sometimes my knees give out a little while walking, which has always been a typical herx symptom for me with any treatment I've tried.
Face looks a bit puffy, maybe from all the water I've been drinking.
Feeling blessed.

No major side effects.

Hope everyone is doing great.
Posted 11/25/2019 11:35 AM (GMT 0)

JovaLyme said...

L4m3M0M said...
Ok, I'll try to update how we are getting on with things here with the Disulfiram, but I am reporting things second hand as I am the mother not the patient...

Day 1 - 100mg taken in the evening with food. Slept really well
Day 2 - no dose. Was more fatigued than normal throughout the day, but despite that kept going. Had some lower back ache which was a new thing, and a pain around right eye/temple
Day 3 - due to take the next dose today, but will see how things go. Slept really poorly though, so may defer another day just to take things slow.

That's interesting.

I had the pain around the right eye/temple on disulfiram as well. It ended up worsening and becoming absolute agony.

Please watch that carefully. I ended up with severe neuropathy on disulfiram. Just thought I'd warn you, as my first few days on disulfiram were pretty much identical to yours. Lower back pain, pain in right eye and temple. I thought it was a herx to begin with, but it turned out to be a side effect that ended up getting much, much worse.

Which brand of disulfiram are you taking?


Sorry - went off line for a few days and I can check what brand it is - it was given to us by the LLMD direct so can't be sure. So far however that only happened on the first day. Since then still taking 100mg every other day and no other issues other than increased fatigue. That could be from the disulfiram or it could be the lyme symptoms - it is so hard to be sure.
Posted 11/25/2019 3:38 PM (GMT 0)
Jova: Information/advice that I share usually comes from doctors, qualified researchers, etc. and I give references whenever I can. When I share my personal opinion, I am always sure to say "I think" or "it seems to me", etc. I think this is an important practice.

Do you have any reason to believe that a low dose of DSF will NOT be effective in killing borrelia? Dr Leigner and Dr Kinderlehrer both say they have many patients who are doing very well staying at a low dose long-term.

I too wish we had more research to go by when deciding how to approach our own treatments, but there is, at least, a lot of clinical experience being shared...
Posted 11/25/2019 4:24 PM (GMT 0)
Latest update:
19th Nov - 100mg
20th Nov - 0
21st Nov - 100mg
22nd Nov - 0
23rd Nov - 100mg
24th Nov - 0

Reporting fatigue (but did have a busy family event at the weekend, so that would have been expected, but fatigue was his biggest issue at the start of his infection). The lower back ache and eye pain was fleeting, only on day after first dose.
Due to stay on 100mg ever other day until 3rd Dec.
Posted 11/25/2019 5:02 PM (GMT 0)
Jova: It's just that all the uncertainty should give more cred to a low and slow approach, no? And the researchers and doctors are saying they don't think pathogen resistance will be an issue because the mechanism of action is likely some kind of metal processing inhibition..

I know you said you had neuropathy before you started and it had become much worse while on the drug. How are you now? Still worse than before you started??

Maybe at some point you will want to start again, lower and slower, and with zinc and enteric capsules. Seems to be helping me..
Posted 11/25/2019 5:27 PM (GMT 0)
I'm pretty sure all of the suggestions you've been given regarding dosing were along the lines of going lower and/or slower in the face of all of this uncertainty you speak of....
Posted 11/25/2019 5:33 PM (GMT 0)
I think the people who are jumping to the 500mg in one or two weeks don't understand that is effectively at 2.5 Gram dosage. Because DSF has an unusual half life of 5 days, the amount in their system effectively 5*500mg or 2500mg

Amoxicillin has a low half life of 90 minutes. That means in an hour and a half, half of it is gone. Generally speaking 5.5X the half life is what is considered totally out of the system. So Amoxicillin is totally out of your system in 90 * 5.5 = 495 minutes or 8 hours. That's why the protocol for lyme is 500mx every 8 hours.

Moxidectin has an amazing half life of 24 days! That means half of it is out in a month! It is completely out of your system in about 4-5 months! That's incredible. Probably why it isn't approved for humans! This is an extreme half life!

Disufliram also has an unusual half life of 5 days, not as extreme as Moxidectin but dramatically higher then Amoxicillin. That means you are accumulating the dosage if you take it 5 days in a row.

What I think people are confused about is they are use to dosage schedules like Amoxicillin but they do NOT understand it accumulates.

Taking 62.5mg for 5 days is 312.5mg effective dosage. So by taking it at a "low" dosage you are actually 5 times what you think you are at!

Taking it at 500mg(!!!) is a 2500mg dosage, NO WONDER you are have catastrophically sick and completely devastated. Because, it isn't like amoxicillin and leaving your system. You are logarithmically higher dosage then what you think you are at!
Posted 11/25/2019 5:36 PM (GMT 0)
What do you guys think I should do? Take a few days off and then do 250mg for a few days instead of the 500?

I don’t think I wasted time by any means, just could be the herxing.

I had seen myself actually improve at the 250 mark so I wonder if there’s just too much toxin in my body.

Thanks.
Posted 11/25/2019 5:37 PM (GMT 0)
I'm at 62.5 mg (in 2 layers of enteric caps) daily. I initially thought I would go up to 250 but now I plan on staying right where I'm at long term. I'm in a pretty good place and there is plenty of uncertainty around whether higher doses are even needed at all.
Posted 11/25/2019 6:07 PM (GMT 0)

UnsightlyCignet☄️ said...
steelogreens,

Maybe try 375mg after a little while? If 250mg is working then by all means continue. Some people have reported plateauing and doing similar to yourself.

They've been recommended that 250mg is enough by their LLMDs this is from a reddit poster by the name of VeryImportanLetters on the r/lyme thread.

oregonhay,

It's tricky stuff and we'll really need more research done to know how it works. I hope that comes around soon.

The mechanism of action and such needs to be acknowledged as well.

potsnpans,

Ah that's interesting, what were your symptoms?


What happened was I was taking it slow and steady, then I increased to 250 after about a month.

Then I started to see improvements, and then I decided to get off my antidepressants. The withdrawal and herxing was too much so I took a week off and jumped to 500.

I was okay at 500 but then last few days I’ve had very bad migraines and last couple days muscle pain. I’m just gonna take a few days off. I don’t think it’s be all end all or anything, just herxing in my body.

Think I may take a week off and then go back to 250 instead of from scratch.

Tricky with these doses lol because if you go too much it’s all over the system.
Posted 11/25/2019 6:11 PM (GMT 0)
yeah take a few days off and start back at 250mg is probably a good idea.
Posted 11/25/2019 6:33 PM (GMT 0)

oregonhay said...
yeah take a few days off and start back at 250Img is probably a good idea.


I'm worried I went too hard too fast. I did email my doctor but most likely just gotta calm it down a bit, let the medicine do its job for a few days, and then drop down to a dose which works for me and then incrementally increase.

Hope the quick increase works for you. I started to feel really good a few weeks ago and am kicking myself for not just taking it slow.
Posted 11/25/2019 8:01 PM (GMT 0)
My symptoms have improved and my baseline is at or near normal for a person without lyme. I have a headache and every few days have a herx in the morning, but that's it.

My basis for low and slow dosage is based on Half Life and Loading Up based on the half life, and is consistent and reiterated throughout every source who speaks from authority on "you should wait 2 weeks before upping the dosage" - it isn't something I am making up from thin air!

The evidence is that people who have increase their dosage without taking the two week wait period in consideration, ... have failed to get better or got worse. That's why I am outspoken about waiting for increasing the dosage. I want them to get better not worse. I am on my way to be cured, if want to join me then wait two weeks before increasing dosages.
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