Girlie said...
Charlie - I don't recall you taking the Dapsone. What did you take with it? And what was your dosing schedule - how much and was it daily?
Everyone talks about these drugs as being 'new'. I think Dr. J. has been prescribing them the longest - saw an older thread from either 2011 or 2013...someone seeing Dr. J taking them.
I did it beginning of last year of 2017... I started off in low dosages, just taking 25mg of Dapsone daily with a boat load of stevia... For a whole 2 weeks, I felt normal, like my old self. Tons of energy, waking up from sleep like a new person, all fatigue and symptoms gone. After about
2-3 weeks, some of the fatigue came back... It became hard to tolerate it so I went off of it after about
a month, took a break, then went back on again.
I would go on and off of it for around 3-4 months or so... And try to build up to 100mg a day, along with taking a lot of folic acid. I never had much success taking it over a month, because it's hard to tolerate and the violent fatigue you get from it. I know Dr. H prescribes certain drugs to reverse the fatigue and prevent your red blood cell count from dropping....
This year I tried taking it in high dosages, even tried taking it with rifampin and doxy, it's not easy to tolerate, but I tolarate Dapsone a lot better than I did last year. However, I don't herx as effectively when I take it now... Has the borrelia bacteria developed some resistance? Did dapsone wipe out the majority of the infection?
Maybe a little bit of both, but again, this was a major stepping stone for me and helped me out tremendously. I no longer have some symptoms I had before....
bluelyme said...
For me bactrim , im not sure if it was subsequent nerve damage from the killing of bart or a true sulfa allergy. My nurse thinks i had a mild sjs and sulfa induced vasculitis . The wasting and circulation may never come back ... i count myself lucky when i hear the bryan deer stories and wonder why its banned in some countries ...
Thanks for sharing bluelyme, sorry to hear about
the sever side effects, I hope one day the circulation comes back. I didn't know it's banned in some countries, I'll have to look that up.
physedgirl09 said...
man this makes me confused cuz im a patient at the J Clinic and if/when they prescribe this to me im gonna be scared to take it.... I hate this crap so much. Ive tolerated every med I have been on so far...so who knows
You're in the best hands, Dr. Js is one of the leading lyme literate Doctors, I would put a lot of trust in them physedgirl09.
Personally, I'd only take Dapsone for a month because I don't have the drugs they use to reverse anemia, as well as all other things. I'm sure Dr. J will test your blood for possibly every week and keep an eye on you!
It's pretty cool you get to see one of the leading physicians, I wish I had the money and access(live close) to Dr. J, just keep hope and do what he says. If the drug becomes way to hard to tolerate, take a break, then try getting back on it again.
I think breaks are good, not only to help flush out toxins and the antibiotics that build up in your body, but it allows the bacteria to come out of hiding and you can hit it hard again. However, I think these persister cell drugs are most effective in the beginning, the plan should be hit the infection as hard and long in the beginning as you can, then down the line you can do pulsing and take breaks...
But listen to what Dr. J says and take everything what we say with a grain of salt, he is one of the leading physicians in treating Chronic Lyme Disease.
Girlie said...
I'm doing okay...I do have some increased pain...but I did take the Dapsone late afternoon yesterday.
And it's got a loooonnnngggg half-life.
Yes it does, I think I mentioned that a few months ago in one of my posts... So it builds up in the system quite efficiently, that's why I personally would only take it for a month at longest...
They say 10 to 50 hours, but it could be longer than that, as well as depending on the individual...
What helped me to flush Dapsone out as well as detox was baking soda with water drinks, as well as smoking marijuana. Believe it or not, I felt that cannabis and the cannabinoids helped flush out toxins. You look up thinks cannabis can do, it's a great detox plant, when planted in the soil I heard it can even remove radiation from the soil. There's probably thousands of patients that swear by it when treating with chemo and radiation, they claim it helps them tolerate these drugs. Just something to think about
girlie, since Cannabis just got approved recreationally in your country...
There's some days I wake up feeling a million bucks after smoking cannabis the night before, it helps me sleep like a baby, and I believe it helps heal the body and detox. I smoke indica dominant strain, it causes you to get very sleepy, probably not good to take it during the day if you're looking to get some work done, but you can still just take it every night, to detox and help you go to bed.
I was never an advocate for cannabis, until I started using it about
3 years ago, first starting off with CBD oil. Without a doubt, I herx when smoking marijuana too. Honestly, I think it may help to kill of biofilms, the cannabinoids are definitely doing something. And it's not like you have to smoke it, many other ways to absorb the cannabinoids into your body... Vaping cannabis, both from oil cartridges or vape machines, like the volcano.
But hey, it's not for everyone, cannabis gets you deep thinking and makes you start thinking about
death and other things. Some people get extremely paranoid while being on it. Scientists are just starting to discover what cannabinoids can do to the brain... It's definitely doing something! The stereotype was that cannabis kills brain cells, come to find out, it may actually do the exact opposite according to professor Raphael Mechoulam....
https://youtu.be/AccREj2l7c4?t=676
And if you think the half life is bad on dapsone girlie, if Dapsone stops working effectively, try and get Dr. J to give you Disilfram, lol... It's supposedly between 60 to 120 hours!
There's without a doubt, something that makes these persister cell drugs work so effectively, it just may be the fact that they absorb into the body well and half a strong half life, which allows you to saturate the tissue in your body.
Disulfiram helped me a lot and I believe it helped wake up things in my brain, I never felt before when I took a pharmaceutical antibiotic. It felt like my brain started twitching, the skin and tissue around my head, even my face. Disulfiram has known to have good penetration in the blood brain barrier... I wish more LLMDs start using this drug to wake up dorman persister cells, I firmly believe it works, I don't know if Dr. J is using it yet, I heard Dr. H was.... At least that's what I heard on Facebook...
I also think Bactrim stays in the system a lot longer than what scientists and Doctors say... They say it's around 10 hours, I think it's a lot longer than that, from my own experience of using the antibiotic. You notice how with both Disulfiram and Dapsone they give you a range, like 10-50 hours... 60-120 hours... At least thats what they gave when I looked up these drugs, I think there should be an estimated half life range for Bactrim too, because I felt it stayed in my system a lot longer than what they claimed, especially when I took it in higher dosages...
And again, Bactrim was also listed in the John Hopkins study as a persister cell killer, interesting... I think we're starting to see a pattern here with drugs that have a long half life....
Post Edited (Charlie55) : 10/18/2018 7:03:56 AM (GMT-6)