Cignet weren't you on disulfiram at one point?
I'd try taking that again in low dosage and maybe with rifampin to really hit it hard, basically Dr. K protocol. But I'd work may way up to rifampin, starting off with disulfiram 62.5mg every day for a month or two, then add in rifampin 250mg once daily.
Let me all spare you the truth despite many of this forum and the facebook keep repeating that disufliram does not hit bartonella, it does kill bartonella. I was taking Disufliram for a whole month without taking any antibiotic and it worked great, it was enough for to hold bartonella back, in fact I progressed on it and it lowered some of my PANS symptoms after 1 1/2 months. By the second month, I worked my way up to 125mg and introduced rifampin once a day because I was feeling pretty good, sometimes two rifampin pills when I felt courage. After disulfiram built up in my body after 2 1/2 months, I'm think about
going off it for awhile due to worry of dopamine as well as the drug itself building up in my body. Either way, I think it's time to take a break... I prolly ramped up to quickly and should of just done disulfiram at 62.5mg 2x daily, because after second month I was doing around 250mg a day with rifampin, pysch herx symptoms became too severe. One of the main problems with disulfiram is you start feeling a ton of energy, feeling a lot better, then get courage to ramp up because you're not herxing as much as you used to, tolerating the drug better, then when you ramp up, before you know it wham, here comes a severe herx and sets you back.
I suspect ramping up when you have bartonella, which main symptoms are PANS and psych issues can be very dangerous, the pysch herxes can definitely put people into panic mode and send them to the emergency room. I'm also a little worried about
the dopamine build up issue, so regardless of all that I'm going to take a break and rotate in antibiotics for a month or two. After getting off Disulfiram, I did get a brief few hours of depression on the second day, but after that been fine. There's quite a few people on the Disulfiram facebook group now bolstering the fact that Disulfiram has withdrawal side effects due to the dopamine build up then once you get off, your body is having withdrawal issues, similar to Xanax or Valium. Please for the love of God, take what these people are saying in these groups and on the forum with a grain of salt, these people are not Doctors, either am I, but I haven't heard anything about
withdrawal from Dr. K and he's treating a lot of patients with the drug.
As he states if depression and anxiety come and go pretty quickly, then you instantly feel better, that tends to be a herx. There was an individual that recently posted how he has a psych scare on the second week off of Disulfiram on the Facebook Group, his symptoms were described as hullucinating. Question... What coinfection specifically causes hallucinating? Bartonella! It is true that dopamine deficiency also causes hallucinating and depression, but you have to watch how these symptoms quickly come and go. There's people who believe this was mainly due to Disulfiram partially still being in the body at a very low bioavailability and on the 14th day, the withdrawal caused his psych hallucinations. I think very unlikely, most likely bartonella flaring. And what I've noticed, unless you want to be on a constant herx state while taking disulfiram, you're gonna have to go on a low carb diet. I think this is what people are having problems with when taking disulfiram, taking way too high of dosage and not going on a low carb diet, you'll get severe flaring/herxing. I think this is the main reason why people suspect Disulfiram doesnt kill bartonella. Remember what Dr. H said, that Disulfiram is the #1 herxing drug now for his patients, pushing Dapsone to the #2 spot. Those of that have bartonella full blown, no anytime you introduce sugar, it's going to cause the bacteria to come out of hiding. Referencing this study how sugar and carbs bring out bacteria, if Disulfiram already kills bartonella and borrelia at a phenomenal rate, you don't need to be any carb or sugar foods.
"Sugar Helps Antibiotics Trick and Kill Deadly Bacteria"
https://www.livescience.com/14124-sugar-improves-antibiotic-treatment-persistent-bacterial-infections.html#:~:text=Also, this individual that was taking Disulfiram was also taking capsules in the 200mg form, people were telling him to split the drug up and go back on to reverse the withdrawals. I really suspect he went too much too soon. And by the 14th day being off, his bartonella came ravaging back. Just being off disulfiram on the third day I already felt my PANS symptoms starting to flare, like heart pattering a little when I stand up after sleeping. Also anxiety here and there, after getting back on doxy, it went away.
By the second day, I did get a brief bout of bad depression for a few hours, but it went a way. I suspect due to referencing withdrawal from dopamine, depression is the withdrawal symptom you'd most likely feel while being off disulfiram, not hallucinating or anxiety.
And just so you know Dr. K has said in his clinical experience "Disulfiram does hit bartonella."
youtube ->
https://youtu.be/q6dlpvbuxrq?t=292Here's also has a new LymeDisease.org article mentioning how one patient with bartonella has patients has lowered their PANS symptoms while being on disulfiram
LymeDisease.org - "He is sensitive to gluten, dairy, and yeast, which I suspected from the pattern of his food cravings. He had a positive Cunningham Panel consistent with PANS. Now on disulfiram, he is doing much better."
https://www.lymedisease.org/kinderlehrer-crazy-sick/Someone posted Dr. Jayakumar Rajadas recent comment on the disulfiram facebook group, that quote "his colleague believes disulfiram erradicates bartonella," despite no current vitro study showing that yet.
Dr K is basically the most experienced LLMD treating bartonella with disulfiram. And we know Dr. Rajadas is the leading researcher who studying the drug, my point we start following what they're saying, rather what others are saying on the forums.
xpeetzax said...
The fact that u are herxing like crazy is a sign that it is working. Maybe try cutting down on dosage like girlie recommended. Haven't heard of azithromicin having any activity against bart. Bart needs at least 2 abx. My LLMD offered me two choices:
I think many also need to remember is we're not only trying to target the active bartonella cells, but the persister cells as well. Which leads to me that disulfiram targets bartonella persister cells, we don't know that for sure, but we do know disulfiram targets the borrelia persister cells. The problem I suspect with most these antibiotics like bactrim, rifampin, and zithromax is they just kill the active bartonella cells. Which means we feel herxing and die off, but it's not killing off the persister cells. So all that's happening is the persister cells just keep replicating and we relapse.
I'm starting to see more and more individuals report on the disulfiram that have been on the drug for 3+ months more, that the drug has tremendously lowered their Bartonella PANS symptoms, if not erradicated them like one male I seen recently post. I tried looking for the post, but what I remember the drug erradicated all his PANS and other bartonella symptoms which were quite severe. He stated he still will have to treat though even though he's currently off the drug.
Cignet seeing though bartonella causes seizures, which you're experiencing. I'd try disulfiram which may target the bartonella persister cells or pyrazinamide which may also target bartonella persister cells. I've been hearing many Dr. H's bartonella patients improving tremendously on pyrazinamide. Remind you pyrazinamide has been found to target tuberculosis persister cells.
https://www.ncbi.nlm.nih.gov/pubmed/26104205#:~:text=Pyrazinamide is a weird one, it didn't show to target tuberculosis cells in vitro, but when introduced in the body(vivo), it showed to shorten TB treatment tremendously. Remind you, a lot of the same tuberculosis drugs used that are used on TB are used on Bartonella, like rifampin.
By the way, lol, I asked my ex-doctor Dr. L if he'd treat my bartonella with Disulfiram, he said it doesn't hit bartonella and the drug still not safe to use. This is supposedly the same Doctor that went to the ILADs conference in Michigan where one of the main discussions was Disulfiram. Again, last time I looked Dr. K said it does work on bartonella, even better with rifampin.
This is a great example how things are miscommunicatated in the lyme community, always have been since day one. Again, just like TF repeats on the LymeNet.org forums, follow what the top LLMDs are saying about
the disease and the top drugs, not what patients or the lower level tier LLMDs say.
That Dr. L in Saginaw Michigan was willing to treat me with a fluoroquinolone like cipro and also a benzo like valium, which have super severe side effects, but he claims disulfiram is still too unsafe to take. I also mentioned pyrazinamide which Dr. H uses for his bartonella patients, he denied me both drugs, but was willing to give me an addicting benzo or a more severe drug like cipro. I think many of the treatment protocols these lower tier LLMDs use is completely backwards. I got lyme 10 years ago or so, despite a decade passed, that LLMD in Saginaw has not changed up his way of thinking, his protocols, or used any of these news drugs despite the top LLMDs like Dr. K, Dr. H, and Dr. J using them. The other two LLMDs in Michigan are useless and don't even treat bartonella. Amazing how we've made so much progress in the lyme world, but some LLMDs are still holding these new breakthroughs back. I do understand the liability, as disulfiram is the number one herxing drug and can cause psychosis. But I'm sorry, there's also severe side effects and even death with these other drugs he was willing to prescribe me such as the benzos, which just mask the bartonella pysch symptoms. And if you dare come off the benzo anywhere in bartonella treatment, most likely it will send you to the hospital. Dont kid yourself, there's a lot of lyme patients benzo suicides.
Post Edited (Charlie55) : 3/17/2020 4:56:25 AM (GMT-6)