Successful Disulfiram cases

Someone posted this the other day:

"I wanted to reach out with an update now that I have successfully completed my treatment with disulfiram. I have Lyme, babesia and bartonella and feel strongly that this treatment hit my Lyme and babesia.
I want to outline my treatment plan. I went the “low and slow” route. My treatment was from 5/8 to 9/26 and took 4 months and 3 weeks.
I started taking disulfiram 1/2 tab 125mg every other day on May 8th. By 5/16 I had stopped taking the other microbial medicine for Lyme and Babesia (al complex, mimosa pudica, a bab, etc). On 6/6 I started taking a half tab 125 mg daily, on 6/27 started taking 250mg daily. On 7/11 I started taking 250mg every two days, and on the third day 500mg. Then on 7/25 I started taking 500mg every two days with 250mg on the third. On 8/8 I started taking 500mg daily.
I took 500mg daily from 8/8 and stopped on 9/26 (total of 7 weeks at 500mg).
I was also taking Samento, Banderol, A-Bart and Burber Pinella, all at 25 drops two times a day throughout my treatment.
I increased my dosage every two weeks until I got to the target dose of 500mg daily. Once I reached 500mg daily I stayed at this dose for 7 weeks and am three days after stopping taking disulfiram.
I forgot what it was like to feel like this. I am eternally grateful for my doctor. Dr. K for his help. I also feel strongly the work I have been doing through weekly therapy for the last two and a half years has significantly contributed to the effectiveness of this treatment. I feel our mental and physical health are significantly related and the better our mental health the better our physical health, the opposite can be said as well.
I have so much more energy, So much more space in my head, so much more connection from my mind to my body allowing me to experience my life in a way that had become a distant memory.
My ability to think clearly, make and execute plans, have the energy to accomplish said plans and then carry onto the next is amazing. This experience of continuing to “wake up” from a bad dream I forgot I was in is truly amazing. It feels like the movie Limitless where the main character discovers a drug that allows him to use the entire capacity of his brain.
I feel like I am actually able to use my mind and body after only being able to control a fraction for so long.
Anxiety, depression, head fog, irritability, back pain, light sensitivity, nausea, trouble staying asleep, low energy levels are my main symptoms that have drastically improved.
I am definitely noticing the disulfiram leaving my system now that I have stopped. The more it leaves the better I feel. I continue to feel better everyday.
I want to share my story and answer any questions. I forgot life could be like this. Everything is coming back to me and this is just the start.
Stay strong fellow Lyme soldiers. Everyone’s path is individual but I know we can all improve. I am cautiously optimistic this treatment is the real deal."

I started on 62mg every 3rd day for two weeks. Then every other day for two weeks. Then everyday. Then increase every two weeks.

I'm currently taking 62mg every three days. More fatigue. Have been sleeping better. Head pain worse. I've only taken three doses.

There's a story every couple days on the Facebook support group from someone telling on significant improvment. There was just someone who was diagnosed with Parkinson's and went through the entire treatment and was able to discontinue their Parkinson meds and still improving once they stopped.

Numerous folks also complaining about neoropathy most ramped up pretty quickly and had this happen. Some did go slow though.

Disulifiram.net has a lot of info.

I would Defitniely start a Facebook page for your yourself and join the group if you’re going to start dsf. Having more knowledge as you go along will be much more benifical for you and there are sooooo many people on their every hour talking about what they’re taking/how they’re feeling. Trust me you’ll feel so glad you did

The disulfiram facebook groups are invaluable as sources of info and support (imo). They've been super helpful for me as I've been going on this disulfiram treatment journey!

steelogreens said...
Hey all,

Three weeks in. I started on the 125 every third day, and now three weeks in and I am taking 375. Yesterday I took 500, a bit earlier than reccomended but I am 190lbs so my doctor said it was fine as I wasn't getting a big herx.

Going to move to 375 for the next week cause the herx sucks.

There is definitely something going on. I am starting to get very tired, eyes feel like they are squeezing currently, but there is something that I can't explain. It's like I could see when this dies down from the herx that I can be myself again.

I am not going to really comment until I am 1.5-2 months in which is where everyone says they have seen huge changes, but depends on how long I am on as theres that battle currently going on between herxing and symptoms being lifted lol. But there is something I feel that will come of this, and that being living life again and going back to work.

I was taking mirtazapene 30MG to sleep and now I have cut it down to 6.5. Still groggy sleep but sleep nonetheless. Slowly weaning myself off.

Will keep all updated but for all wondering, I wasn't herxing, I have now increased my dose and am getting mostly head pressure and all herxes, with not pain in my joints but this weird sensations in my hands and feet.

God bless. I will be back in a few weeks.

Please do take care. Many patients are finding that dosing beyond the 250mg threshold is leading to a lot more problematic issues. So being conservative and careful is quite advisable imo. The Dr Kinderlehrer interview is highly instructive on this score. As always, the mantra of listen to your body, and only dose as tolerated is usually a very good framework to follow. Ie, don't let the responses (flares, but also potential side effects) get out of hand, don't push beyond your body's capacity (which is always a good rule of thumb when treating for these infections). Issues can usually be hedged by lowering the dose or taking a break from the agent if things are beginning to get out of hand.

Wishing you good luck!!! this is a great agent imo, what I call fire, a gift, but must be used with great care and caution. We must treat it with utmost respect.

There are numerous folks who finished treatment and are claiming their symptoms are gone. Most were sick for years. Most folks are still pretty early in treatment. Most are claiming improvements.

I started at 500mg and I agree this is where I seemed to have the most side effects from the drug. Also, keep in mind if you have Bartonella you will probably have to supplement your therapy with Bart drugs. Being on DSF has made my Bart flares/herx explode! I have an appt with my LLMD Friday. I'm going to ask him to come up with a balanced plan that uses DSF to treat Lyme and another treatment method to treat Bart. I'm worried about his ability to do that since DSF is so new. Be careful with your dosing and adding anything else on top of DSF. I've had INSANE herxes on it. My last herx last 10 days and I was couch ridden almost the entire time.

JovaLyme said...
I would join the support group, but I don't have Facebook and don't want to use it ever again if I can help it.

I am intrigued to know how DSF affects people with severe depersonalisation. I am terrified of DSF making matters worse as a side effect is neuropathy.

It also doesn't help that I don't know what coinfections I have. I kind of assume that I have both babs and bart because of my symptoms, but without knowing for sure I am reluctant to try something as seemingly powerful as DSF. I desperately want to try it, but I'm worried.

Frankly, the usefulness of the FB DSF groups is quite excellent (even if I consider FB itself to be... eh I won't use the words).

You could just create a sort of throwaway FB account and then use it only for the groups as a means of accessing the info. It's a good way to get informed on the drug and peoples' experiences.

yes, DSF has certainly improved my baseline symptoms (which are pretty much ALL neuro). But as with any treatment, in my case it requires extended use over time to notice symptom improvement (ie push back the pathogen load, which has been built over decades). I really think for the patients who have greatest CNS involvement, pathogen loaded up in there, and have been sick the longest (where pathogen has had the opportunity to build up colonies over the longer time periods), it will require the more careful and methodical approaches to hedge against intolerable responses. Because I think those patients (myself included) are often prone to the stronger responses when we administer effective therapeutics that hit the pathogens. The mental frameworking around this is that treatment is a marathon, and we need to operate like the little turtle (in the hare and the turtle story!).

Jovalyme, please feel free to email me throughout if you are needing support and or any help. Really recommend watching the Dr Kinderlehrer interview on disulfiram treatment and his approach, it really is the smart way to go imo. Especially for patients like us where going with a very low slow approach is highly advisable. He lays out the treatment approach, and is having success even in his most sensitive patients.

Jova - your post brought tears to my eyes - your struggles are immense and yet you push through as best you can... your wife sees this.

Please keep us “in the loop” with your Disulfuram trestment - ok?

Keep looking ahead and keep your eye on the prize....

Onlyname I will be starting tomorrow as well! Starting at 125mg every 3 days. How about you?