Dapsone therapy lyme and co-infections

heapsreal

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Anyone used dapsone alone or in combo with doxy and or rifampin or maybe azithromycin for lyme and co - infections? Going by Dr Horowitz info online it is A very successful drug for the above and I do recall once one is at 100mg per day of dapsone, only 8 weeks is needed to clear lyme and co, so far.

Interested to hear personal experiences.

I feel like I've posted similar article before, probably just cfs dementia????


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heapsreal

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Dr Marty Ross talks about it in a short video on his website: https://www.treatlyme.net/guide/dapsone-lyme-persisters
Thanks , I have read abit of Marty Ross's work, he seems switched on. Dapsone sounds promising but also scary if you happen to be one of the people having herx reactions.
I'm currently doing doxy and pulsing flagyl. Flagyl is a tough drug but I feel like I'm in that zone of a herx is a good sign and better than no herx, but I herx on flagyl or rifampin and it smashes my mood. I just wish I knew for sure it was doing something 🤞🙏

Lyme is something I'm really not sure I have. I've tested neg to a lyme test a couple yrs ago here but heard it's only 40% accurate. On dr Horowitz questionnaire I rate high for a tic born disease and have had herx reaction early on in my cfs from low doses of doxycycline etc and can now tolerate doxy well and feel better on it but as I said earlier, flagyl and rifampin smash me.

Dapsone sounds promising because it can be an 8 week treatment and it's all done. If you don't herx it's suppose to have good antiinfammatory effects.
👍
 

kewia

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On dr Horowitz questionnaire I rate high for a tic born disease and have had herx reaction early on in my cfs from low doses of doxycycline etc and can now tolerate doxy well and feel better on it but as I said earlier, flagyl and rifampin smash me.
Effects caused by doxycycline can also stem from it's antiviral effect:
In Vitro Antiviral Activity of Doxycycline against SARS-CoV-2
Antiviral activity of doxycycline against vesicular stomatitis virus in vitro
Antimurine retroviral effect of doxycycline
 

pattismith

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Thank you @heapsreal , Dapsone will be on my drugs list to target neuroinflammation, if my other trials fail :thumbsup:

Dapsone, More than an Effective Neuro and Cytoprotective Drug - PMC (nih.gov) 2022

Dapsone (4,4'-diamino-diphenyl sulfone) is a synthetic derivative of sulfones, with the antimicrobial activity described since 1937

. It is also a drug traditionally used in dermatological therapies due to its anti-inflammatory effect.

In recent years its antioxidant, anti-excitotoxic, and antiapoptotic effects have been described in different ischemic damage models, traumatic damage, and models of neurodegenerative diseases, such as Parkinson's (PD) and Alzheimer's diseases (AD).

Finally, dapsone has proven to be a safe and effective drug as a protector against heart, renal and pulmonary cells damage; that is why it is now employed in clinical trials with patients as a neuroprotective therapy by regulating the main mechanisms of damage that lead to cell death.
 

heapsreal

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Doxy is well known for antiinflammatory effects, probably one of the main reasons it helps cystic acne. But as an antiviral agent, I haven't heard it effective against common cfs viruses like enteroviruses or the herpes viruses like ebv, cmv etc.
It may indirectly treat viruses by treating bacterial infections like mycoplasma and taking the strain off the immune system???
 

heapsreal

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kewia

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It may indirectly treat viruses by treating bacterial infections like mycoplasma and taking the strain off the immune system???
From what I read, it hampers some viruses in their production cycle. But there may also be the effect you described.
 

duncan

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@heapsreal , I did dapsone for like six months. In my case, it did not help. Also, as I recall there are potentially some side effects. My memory is bad. But I do recall it mimicked some of the downstream effects of my babesia, e.g. threw my platelets off maybe? or something like hemolytic anemia? Sorry I don't recall. I do remember my doctor and me debating if the symptoms were from dapsone or babs. I maintain to this day they were from babs.
 

heapsreal

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@heapsreal , I did dapsone for like six months. In my case, it did not help. Also, as I recall there are potentially some side effects. My memory is bad. But I do recall it mimicked some of the downstream effects of my babesia, e.g. threw my platelets off maybe? or something like hemolytic anemia? Sorry I don't recall. I do remember my doctor and me debating if the symptoms were from dapsone or babs. I maintain to this day they were from babs.
Yes I've read it can effect folate metabolism which than effects red blood cells etc.
6 months on it wow. Are you still positive for lyme? Obviously didn't seem to help symptoms much if at all??
One thing that interests me about dapsone was that it's effects on folate and how it killed bacteria sound somewhat like bactrim. Bactrim I've found quite helpful while I'm on it buy I only do 10 day courses. Bactrim can treat babs to a certain degree???
 

duncan

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6 months on it wow. Are you still positive for lyme? Obviously didn't seem to help symptoms much if at all??
I am usually positive, say two thirds of the time. The thing that intrigues my infectious disease specialists is that my titres go down, only to trend back up. I'm told that suggests active infection. I am also positive on the brand new MTTT CDC Lyme diagnostic. Moreover, for the past year my babesiosis labs have come back abnormal for both IgG and IgM - which typifies reactivated parasites. So, eh, not much good has been happening on the symptom front, but it's cool.

One thing that interests me about dapsone was that it's effects on folate and how it killed bacteria sound somewhat like bactrim. Bactrim I've found quite helpful while I'm on it buy I only do 10 day courses. Bactrim can treat babs to a certain degree???
I think I've been on bactrim, but I've lost track. I've been on so many things over the years, I started treatment years after I was infected, maybe 10 years. That's too long. But some of these drugs are purported to help portions of the infected, and since I want to be a portion of that portion, I try them. :) Luck is fickle I guess.

What babs do you have? I've microti, which on paper can be treatable. So far, I've apparently failed though. duncani may be a different beast altogther; treatment news for that hasnt been as encouraging. There's at least a third babs I think but my memory has not been as sharp as I'd like for a while, except in spurts.

Anemia is a thing to watch out for, especially hemolytic anemia.

I suppose now Horowitz is pulsing his dapsone. Liegner is promoting disulferam. In-vitro persister busters. There are a bunch others thanks to Zhang at Johns Hopkins, and that NorthEastern guy whose name escapes me.. . All in the shadow of the Federal Tick-borne Disease Working Group.
 

heapsreal

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What babs do you have? I've microti, which on paper can be treatable. So far, I've apparently failed though. duncani may be a different beast altogther; treatment news for that hasnt been as encouraging. There's at least a third babs I think but my memory has not been as sharp as I'd like for a while, except in spurts.
No testing here for babs but going buy Horowitz book and symptoms, it's possible I have babs, night sweats and frontal headaches like sinusitis. Have had a few blood tests with haemolytic anaemia but I think it was from varicella or cmv. So my babs symptoms respond to bactrim and cryptolepis, which makes me lean towards a babs diagnosis.
I suppose now Horowitz is pulsing his dapsone.
I have read Horowitz has had some patients take 400mg a day. The standard dose being 100mg a day. Personally I'd start low like 50mg and than maybe 100mg and no longer than 8 weeks.

I use Horowitz book to help confirm my diagnosis. He did a study with his questionnaire being 80% accurate. No real options for proper diagnosis here. But general labs usually comeback say possibly current or recent infection. Drs aren't interested in looking further.
 

heapsreal

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I mentioned in this thread about bactrim and how it's helped and it seems to work in a similar action to dapsone but they do seem to have different side effects, I think bactrim being the safer. Copy and paste this next part from Wikipedia, I know it's wiki but it can be a good place to start researching.

Dapsone is commonly used in combination with rifampicin and clofazimine for the treatment of leprosy.[3] It is also used to both treat and prevent pneumocystis pneumonia (PCP).[3][9] It is also used for toxoplasmosis in people unable to tolerate trimethoprim with sulfamethoxazole.[9]

Trimethoprim/sulfamethoxazole is bactrim a combo antibiotic.

My thoughts are maybe I need to do longer than 10day courses with bactrim🤔, possibly 8 weeks like the dapsone research shows for lyme. Some people are allergic to bactrim but if not it just seems to be a safer drug than dapsone.

I wish I could hear from more people who have used dapsone🤔. I'm just paranoid about the side effects of it for some reason😟