How does disulfiram stack up for babesia

Some people are saying that it's hitting it, but they don't even know if they have babesia for sure. Really sorry if this offends someone. They may have it. They may not. Sweating, head pressure, etc.... on whatever drug does not necessarily mean Babesia and the more they go on and on and on about their symptoms the less I believe them. If they are that sick they wouldn't have the energy to do this. No way. Anyway, there is some evidence that it has activity against B. microti but not so sure about B. duncani. The researchers at Stanford will be testing DSM against bartonella and babesia and hopefully they test for as many strains as possible since they do act differently and may respond to different treatments. I'm sure they will.

I do realize that not everyone can get tested and that the tests aren't always accurate. I'm just saying that for research purposes self diagnosis and/or clinical diagnosis doesn't hold a lot of weight. On a more personal note, I would feel much more comforted hearing from someone who was actually diagnosed via a blood test for B. duncani and then got better then from someone who is diagnosing themselves. I've been dealing with this for so long and after a while the miracle cures of someone who maybe didn't have Lyme/Babesia/Bartonella to begin with gets old and depressing. It's becoming too difficult for me to even come on these boards because there is always at least one person who diagnosis themselves with everything under the sun (even adding parasites, heavy metals, etc....to the mix of every entire tick born illness that exists) monopolizing entire threads and eliciting sympathy from those who can't see through it or may be doing the same thing. I flat out do not believe these people.

Sorry not sorry.

Post Edited (Natasha) : 10/29/2019 6:03:27 PM (GMT-6)

Natasha:"......on whatever drug does not necessarily mean Babesia and the more they go on and on and on about their symptoms the less I believe them. If they are that sick they wouldn't have the energy to do this. No way. "


re: energy. I'm one who has terrible pain...but have not had the fatigue...so my energy is generally okay - not the best, but I can function every day...except when the pain is bad.
I was " that sick"...but my energy wasn't hit too hard.

Girlie said...
Natasha:"......on whatever drug does not necessarily mean Babesia and the more they go on and on and on about their symptoms the less I believe them. If they are that sick they wouldn't have the energy to do this. No way. "


re: energy. I'm one who has terrible pain...but have not had the fatigue...so my energy is generally okay - not the best, but I can function every day...except when the pain is bad.
I was " that sick"...but my energy wasn't hit too hard.

I hear you. I generally do get that sick but not really fatigued either though sometimes sudden periods of fatigue will hit. Thankful for the moderators that keep posting even when/if they don't feel like it.

I'd also like to know more about the effectiveness of DSF on babesia. It seems to be the general consensus among llmds and current patients that it is very effective, but I am unaware of any science related to this.
I was positive for babesia microti years ago, am now in early stages of DSF treatment...

I think dosing may be an issue I suspect the dosing for an effective treatment for babesia differs from that of borrelia. But maybe there is a sweet spot it will be years Im sure before someone figures that out unfortunately.

skinny_joe said...
I think dosing may be an issue I suspect the dosing for an effective treatment for babesia differs from that of borrelia. But maybe there is a sweet spot it will be years Im sure before someone figures that out unfortunately.

I was kinda thinking the dosing wouldn't matter so much. Any particular reason you think it might?
I guess I think of it as being such a systemic agent that it wouldn't matter where the pathogens are hiding...
Also, have you seen the study about tissue saturation being reached independent of dosage?

JovaLyme said...

Natasha said...
JovaLyme, not "countless" members, really usually just one or two. And not really thinly veiled either. Pretty blunt really. It's just my opinion anyway. Everyone has their own opinion. I'm sorry you took personal offense. I can tell you're sick and I'm glad you're doing something about it.

I had some air hunger this morning which I haven't had since I last treated Babesia like 15 years ago. Treatment didn't work and so I just stopped it. Anyway, yeah air hunger is no fun. My night sweats were so bad back when I was really symptomatic for Babesia that I had to turn over like every 5 minutes while sleeping. Felt like a chicken on a rotisserie. Glad those symptoms went away but they may come back on this treatment.

Wish you the best.

No problem.

I know that having this awful disease puts you through some kind of living hell and makes all of us a little aggravated at times. I've blown up on here before myself. It's to be expected with so many people suffering and in extreme pain that, every now and again, things might get a little personal/heated, or at least seem that way.

Everyone here is really unwell, apart from those who are kind enough to come back after they have recovered and offer advice. We are all suffering, we are all frustrated, we are all desperate to get better and lead a normal and fulfilled life.

Apart from when I was originally bitten which gave me a truly awful fever, I have rarely suffered night sweats. Maybe very occasionally, but since being on DSF they have happened several times. I woke up this morning and my T-Shirt was drenched. The air hunger is quite bad on it too. The worst new thing I have had on it though is without doubt the head pain. I have a permanent headache, but twice now and, to a lesser extent, last night, I have experienced headaches/pains like I have never had before.

The right hand side of my body is affected much worse than my left for some reason and on disulfiram I have had pain in the right hand side of my head that feels like someone has set my brain on fire and then parked a truck on the right hand side of my head. It's truly excruciating. Plus the pain and pressure behind my eyes is horrendous. I've never had anything like that before. The last time it happened, I prayed to God and just said "If this disease is going to kill me, please let it be right now because this is more than I can take!" It really was that bad. I was crying out in agony and nothing would take it away for what seemed like forever.

Only babesia comes with symptoms like that from what I know. Throw in the sweats and the air hunger and chest tightness and I don't see what else it can be. I've only had this since starting disulfiram. I thought my symptoms were bad enough before until those surfaced.

It does look like disulfiram is waking up babesia for you already then - even at a low dose. What was it like at its worst?

I think disulfiram is the real deal. It gets at this stuff big time.

I'm really not helping myself by addressing other things at the same time like parasites and worms. I kept reading on here about parasite cleanses and had never really given much thought to it, but I figured I might just buy a fairly standard worm treatment from the pharmacy and see if it did anything. A few days later I passed a gross looking thing that I discovered was a ropeworm. Since then I've taken more and now added Mimosa Pudica and, my life, I had no idea what was living in my intenstine! There is all kinds of stuff coming out of there now, so I've got die off from that stuff to deal with as well. My body seems to be riddled with bacteria, parasites, worms and I don't even know what else. No wonder I have felt so terrible for so long.

I haven't even thought about mold yet! Yep, I spent ten years living in a very old, very damp house that had mold. I left there four years ago, but I guess it's quite possible some of that got to me as well. MCAS is yet another possibility. I don't know how that is diagnosed either. I just want to address everything that could possibly be contributing to my badly failing health. If I had the money I would have my fillings taken out and replaced with something else like others have too just as a precaution. I want to get as much toxic crap out of my body as I can to give myself the best chance of recovery.

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Well you're pretty gracious in the way you're dealing with me if you felt my post was directed at you, so thank you and I respect that. I didn't even know you were thinking about parasites and I do understand it's a problem with Lyme patients. I was diagnosed with one via a urine test. The name starts with an s and it's a long name. Don't remember it off the top of my head. I never really took the diagnosis seriously since it the test was done via an alternative type of practitioner who looked at a urine sample under a microscope. Still, it might explain my frequent urination.

My worst B. duncani symptoms were head pressure, feeling hot all the time, and night sweats. Also had air hunger and feeling like I was rocking on a boat or something while walking. Lyme is often one sided so your right sided symptoms may be Lyme. Coinfections are more likely to effect both sides but this isn't always the case. Does sound like you have Babesia. I guess I'm lucky that I had access to a good lab and was able to get diagnosed even if the treatment didn't work. Not knowing what you're dealing with just adds to the stress of this disease as you have learned.

I had my blood examined under a microscope before and after doing DSF for 5 weeks at mostly 250mg daily and about 10 days at 500mg.

I have igenex FISH test confirmed Babesia Duncani and have been fighting it for 5 years.

There was no change in the amount of babesia in my blood smears.

I’ll let y’all decide whether DSF hits babesia

He had an Igenex FISH test. Doesn't get much more accurate than that and is often or at least it used to be sent out to the Sonoma County Health Department for testing. It might be an in house test now.

JovaLyme: Thanks for sharing about the abuse. I was also abused and had years of therapy. Still, I find it hard to trust older females. Thanks mom.
I also have a major increase in pins and needles that goes away completely by day 3. This is a symptom that always flares with me when hitting Lyme or whatever is being hit. Can't really know for sure I guess.

mpost: Good point and something to keep in mind for sure. I have come across one study a while back where they randomly tested a bunch of healthy people for Babesia (not sure which flavor). Quite a few tested positive yet they had no symptoms so maybe just knocking down the Lyme will be enough for some at least.

Rikky: Sorry it's not hitting your duncani but do you feel it helped at all?

Rikky, I think maybe they are just scared and in denial. We all want so badly to believe this is the cure, and it may be for some people, but clearly it's not for everyone. The good news is that something will come along even for the most stubborn cases.

In my opinion DSF causes inflammation at the cellular level so this also impacts the pathogens and if they try to escape where are they going?

For those that have been treating with abx for years those pathogens like Bart go cell wall deficient and are much harder to kill given their adaptation to survive so we’re just pissing them off not clearing them out.

What some are chaulking up to side effects could very well be this inflammation. I got some nasty head issues when going to 500mg and taking ibuprofen did help but it was short lived. Sort of validates my theory.

I’m going to pulse MB using Jemsek’s pulsing schedule. To me and my research MB Is safer than DSF.