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Disulfiram - Part 6

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Posted 10/27/2019 3:41 PM (GMT 0)
Disulfiram discussion continued from part 5, here: https://www.healingwell.com/community/default.aspx?f=30&m=4158858&p=6
Posted 10/27/2019 3:44 PM (GMT 0)
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
Posted 10/27/2019 4:04 PM (GMT 0)

oregonhay said...
methylene blue is just the blue dye used in food and everything blue. if you ever had blue popsicles and ended up with a blue tongue that wouldn't go away for a day, that was it. In fact, if I am right about that you could just buy the blue popsicles. probably one or two a day would be the correct dosage.

No, that's FD&C Blue No. 1. Eating blue popsicles won't cure bartonella.

https://en.wikipedia.org/wiki/brilliant_blue_fcf

JovaLyme said...
What time of day do you usually take disulfiram and do you take it with or without food? I took it with a bit of stevia today and also a small amount of methylene blue. It hit me harder than I've ever been hit before.

I find that disulfiram has a stimulant effect that interferes with sleep. I'm going to try taking the next dose in the morning.
Posted 10/27/2019 4:41 PM (GMT 0)
Quin, Yes I screwed it it is FC&C Blue No1, thanks.

I am on my second run with DSF starting week 3. 62.5mg. Feel very good and can fully function normal, no fatigue or symptoms. Hoping the DSF does very little to nothing this week. If the herx goes away for a week, then I will up it to 100-120mg next week this time. Very small herx every night just where I want it. Fasting 2-3 days and then meat only. Daily Vitamin B3 Niacinamide, Magnesium, Zinc, Iodine, Potassium, Salt. Vick's vapor rub at night. 1/4 eye dropper 2.2% Methylene Blue in the morning. Peppermint Tea with Quinine, coffee. Black charcoal or Spirulina.
Posted 10/27/2019 5:18 PM (GMT 0)
Darn it I was on my third blue Popsicle of the day. My kids are annoyed as Im not sharing. My entire mouth and tongue is blue!! Ok I had to add some humor.
Posted 10/27/2019 10:21 PM (GMT 0)

JovaLyme said...
@Girlie,

I'm not playing down herxes. They are absolutely horrible. If it was happening every single time I took Disulfiram I would back right off, but so far there have only been a couple of big ones and I managed to get through it.

I find them quite reassuring in a way. If I know it is killing bacteria I know the drug is doing what it is supposed to do. If I felt nothing I would be more worried.

I don't really see how you can kill bacteria and not herx. It's bound to happen.

True - herxes are to be expected....but they can be horrific and an emergency.
I knew someone who died from one. Not trying to scare you...but I'm just concerned - I thought I was handling the herxes fine...until I had the herx from he//
Very close to going to the ER. my arms were jerking and I couldn't stop them....I was shaking, rapid heart rate, high fever (103), unbelievable head and body pain, head sore to touch. Bad pressure behind my eyes,

Ok - I'm done lecturing...lol. Just don't want you to harm yourself.
Posted 10/27/2019 10:27 PM (GMT 0)
Just an FYI I checked the Drug Interaction checker that I use and I put in Disulfiram and rifampin, Disulfiram with Rifabutin, and Disulfiram with minocycline.
Nothing showed.

This is the one I use:

https://www.drugs.com/interactions-check.php?drug_list=917-0,1636-0
Posted 10/27/2019 11:28 PM (GMT 0)
So far I have to say that I don't like disulfiram at all. It might be that I am a little too fragile for it because of my severe neurological symptoms. I would say try and knock things back a little with other antibiotics first before going on it because it is not only powerful, but also a drug that makes you feel like crap even when you're not herxing.


Take less. Take 33mg every third day do your best to split the pill in 1/8s . If your too fragile your taking too much. Dr Liegner is starting fragile patients as low as 25mg once a week or every third day. It really sounds like your dosing way way too high for your current state.
Posted 10/28/2019 12:23 AM (GMT 0)

JovaLyme said...

skinny_joe said...
So far I have to say that I don't like disulfiram at all. It might be that I am a little too fragile for it because of my severe neurological symptoms. I would say try and knock things back a little with other antibiotics first before going on it because it is not only powerful, but also a drug that makes you feel like crap even when you're not herxing.


Take less. Take 33mg every third day do your best to split the pill in 1/8s . If your too fragile your taking too much. Dr Liegner is starting fragile patients as low as 25mg once a week or every third day. It really sounds like your dosing way way too high for your current state.

If I intended to stay on this for any great length of time I would take less, but I've already decided that I don't want to take it for more than a few weeks.

What is your goal in relation to using Disulfiram? Obviously we are in the infancy stages as far as treatment length and dosage goes, but we can probably say a few weeks isn't likely to yield the benefits most are looking for.
Posted 10/28/2019 2:26 AM (GMT 0)
Ah, I see!

I’m not questioning your self-diagnosis. I like to compare others experiences to my own. What symptoms have made you suspect Babesia and Bart?
Posted 10/28/2019 2:58 AM (GMT 0)

JovaLyme said...

Lymie24 said...
Ah, I see!

I’m not questioning your self-diagnosis. I like to compare others experiences to my own. What symptoms have made you suspect Babesia and Bart?

I always thought I had Babesia and Bart, but haven't been specifically tested for those yet. Borrelia was positive and, as we know, it rarely travels alone.

My symptoms are mainly neurological and especially in my brain. Bart and Babs both affect the brain. My Bart symptoms are the usual, scratch rash, burning souls of feet, depersonalisation etc etc.

I wasn't sure about Babesia until I tried disulfiram and started getting very bad sweating and huge increases in head pressure - particularly in the right hand side of my head and behind my eyes. Nothing else has really made me sweat like that and I haven't specifically treated Babesia before.

Taking methylene blue along with disulfiram worsened the depersonalisation and other symptoms associated with Bartonella. In fact, taking those two together made all my symptoms go absolutely nuts and I had horrendous herxing.

Are you on disulfiram or thinking of trying it? I think anyone with Lyme should give it a shot to be honest. It is very powerful stuff.

Can't pain in the bottom of your feet also be adrenal? Dr M used to tell me that. But my God, the derealization, it's so bad. Is this def a bart thing? I'm starting to believe mine may be primarily mast cell because the only thing that helps it is detoxing. Starting disulfiram in a week or two, though. Hopefully something comes of it
Posted 10/28/2019 5:13 AM (GMT 0)
Apparently I'm not the only one who noticed the effect on REM sleep...

https://www.ncbi.nlm.nih.gov/pubmed/6282542
Posted 10/28/2019 5:06 PM (GMT 0)

JovaLyme said...
That's interesting and actually a quite unhelpful side effect when you think about it.

My sleep is just terrible in general, so I can't really tell if disulfiram is making it worse. It will be interesting to see if I notice any difference in the quality of my sleep after I stop taking it.

It's messing with my sleep in various ways. And when I do sleep, I get weird confusing dreams.

The painkiller effect isn't helpful either. I take disulfiram, and feel fine. The next day I feel awful.
Posted 10/28/2019 7:20 PM (GMT 0)

Quin said...

JovaLyme said...
That's interesting and actually a quite unhelpful side effect when you think about it.

My sleep is just terrible in general, so I can't really tell if disulfiram is making it worse. It will be interesting to see if I notice any difference in the quality of my sleep after I stop taking it.

It's messing with my sleep in various ways. And when I do sleep, I get weird confusing dreams.

The painkiller effect isn't helpful either. I take disulfiram, and feel fine. The next day I feel awful.

I've had this since the encephalitis 7 years ago. Is it just a brain inflammation thing? I'd love to rid myself of the nightmares and confusion
Posted 10/28/2019 10:41 PM (GMT 0)
My disulfiram is shipping any day now.
Posted 10/28/2019 10:53 PM (GMT 0)

JovaLyme said...
@Quin.

Is that a recognised side effect of disulfiram?

What, specifically? That it messes with sleep?

JovaLyme said...
I have been sleeping very badly of late and I do have weird and very vivid dreams, but I have done for as long as I can remember.

I am getting more tolerant of disulfiram. Today hasn't been that bad on it. The tingling in my head is probably as bad as ever and that always gets worse when I take it, but other symptoms or effects from it are slightly decreasing. I am considering upping the dose a bit to see what happens. I haven't really experienced many bad babesia symptoms for two or three days now.

What dose are you on?

I took 100 mg, felt awful for the next few days, then yesterday I took 50 mg. I tried taking naltrexone with it to see if that would lessen the side effects. It didn't seem to. I was awake until 2 am, then I slept most of the day today.

Aerose91 said...
I've had this since the encephalitis 7 years ago. Is it just a brain inflammation thing? I'd love to rid myself of the nightmares and confusion

The weird dreams haven't been much of a problem for me. I noticed it a little when first taking naltrexone, and when withdrawing from valproate. Now I am getting some sleep disturbance from disulfiram.

Nightmares tend to happen when my adrenals act up and produce a lot of adrenaline. Taking a small dose of hydrocortisone before bed resolved this.
Posted 10/29/2019 12:31 AM (GMT 0)

JovaLyme said...

Lymie24 said...
Ah, I see!

I’m not questioning your self-diagnosis. I like to compare others experiences to my own. What symptoms have made you suspect Babesia and Bart?

I always thought I had Babesia and Bart, but haven't been specifically tested for those yet. Borrelia was positive and, as we know, it rarely travels alone.

My symptoms are mainly neurological and especially in my brain. Bart and Babs both affect the brain. My Bart symptoms are the usual, scratch rash, burning souls of feet, depersonalisation etc etc.

I wasn't sure about Babesia until I tried disulfiram and started getting very bad sweating and huge increases in head pressure - particularly in the right hand side of my head and behind my eyes. Nothing else has really made me sweat like that and I haven't specifically treated Babesia before.

Taking methylene blue along with disulfiram worsened the depersonalisation and other symptoms associated with Bartonella. In fact, taking those two together made all my symptoms go absolutely nuts and I had horrendous herxing.

Are you on disulfiram or thinking of trying it? I think anyone with Lyme should give it a shot to be honest. It is very powerful stuff.

------------------------------------------------------------------------------------------------------------------------------------------------------------

I'm sorry to hear that. I still get amazed after 4 years of this illness when I hear how similar all our symptoms/journeys are. I feel like I've had pretty much every single symptom possible associated with Lyme, Bart, Babs. However, the neuro symptoms are among the worse. I empathize with you there. I get the Bart scratches and all the clinical symptoms. Similar to you, I was doubtful of my Babesia diagnosis despite a postive test through Igenex. However, when I treated with DSF I also started getting consistent night sweats which confirmed Babs for me.

I have treated with Disulfiram twice. First time at 500mg about 45 days. Second time I worked up to 375mg and I lasted about 40 days. You are right. This stuff is powerful! The drug has been super hard to take for me. I became depressed and pessimistic both times on it. The herxes were out of this world strong. I probably should have started at a lower dosage. I believe in the drug however. It's doing great things. You almost have to maintain a laser strong perspective and not let your mind get down in the dumps when the going gets tough . That's my experience.
Posted 10/29/2019 12:16 PM (GMT 0)

JovaLyme said...
Yep, is sleep disruption and strange dreams a known side effect of dsf?

It's not specifically listed, but the stuff is majorly messing with my sleep.

JovaLyme said...
You're actually at quite a low dose then? I was absolutely terrified of dsf before I took my first pill and expected some horrific herxing. I did have a couple of very bad ones, but it has really backed off now. The worst it does at 125mg a day now is increase the tingling and pins and needles in my head, plus a few other places to a lesser degree. It started off really hitting me hard, but not now so I need to up my dose.

Yeah, after reading people's complaints about painful neuropathy and extreme alcohol reactions, I was afraid to try it. That didn't happen, but disulfiram did make me feel really weird, and not good in general.

I'd probably still recommend trying valproate first. It's not a fun drug to be taking either, but the neuro side effects aren't quite as bad. Mostly it just made me tired, and suppressed REM sleep a bit. It didn't cause the crazy moodiness and cyclothymia that disulfiram did.
Posted 10/29/2019 12:20 PM (GMT 0)
Ive actually slept much better on DSF. Several nights Ive slept 7 hours straight. Its been at least 2-3 years since I could say this. Unfortunately when i wake up Im stiffer then a board and struggle to walk for several minutes and feel miserable the first couple hours of the morning.
Posted 10/29/2019 2:49 PM (GMT 0)
Ive at 63mg everyother day now. The drug gives me a general feeling of crap inside. More muscle aches and more fatigue.
Posted 10/29/2019 4:03 PM (GMT 0)

skinny_joe said...
Ive actually slept much better on DSF. Several nights Ive slept 7 hours straight. Its been at least 2-3 years since I could say this. Unfortunately when i wake up Im stiffer then a board and struggle to walk for several minutes and feel miserable the first couple hours of the morning.

I've noticed this, but I assumed the muscle aches were herx.

JovaLyme said...
I've also added methylene blue in. Just a few drops once a day. The fist time I did this the herx was absolutely horrendous, but it's not too bad now.

I honestly can't say whether disulfiram hits Bartonella. I still get Bartonella symptoms on disulfiram. Whether it is just flaring up or a die off reaction I don't know. As I say, I won't know until I stop taking disulfiram, get it out of my system and see what my baseline symptoms are like.

Watch out for rashes or nosebleeds which might indicate bartonella is active. Also I found that when killing bartonella I would get dark urine (bilirubin) and a stomach ache.
Posted 10/29/2019 4:26 PM (GMT 0)
“ Watch out for rashes or nosebleeds which might indicate bartonella is active. Also I found that when killing bartonella I would get dark urine (bilirubin) and a stomach ache.“

You get nosebleeds from Bartonella? Heavy ones -? How long do they last?
Posted 10/29/2019 7:14 PM (GMT 0)
I dont know if you all on the thread know about this, but thought id put it out there. I have no opinions on this, its new to me.

PubMed: Mitochondrial injury by disulfiram

https://www.ncbi.nlm.nih.gov/m/pubmed/11714485/?fbclid=iwar0xybqxbusvl3k5ohstswvdwvzeoicvboyqavpifsyghbdoqj67etaiycc
Posted 10/29/2019 8:22 PM (GMT 0)
But........since ABX has history, they pretty much know which ones to avoid. I avoided the class which has possible tendon issues, since my tendons already were damaged.

If I were you, I'd just goggle more about disulfiram side effects from actual users (facebook?) - see if there's enough info yet on avoiding the possible side effects.
Posted 10/29/2019 9:03 PM (GMT 0)
Does anyone know how to detox when using disulfiram?
I want to make sure I have everything for when it gets here.
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