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Attempting Dr. Horowitz's double dapsone protocol

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Posted 2/23/2021 7:29 PM (GMT 0)

carlnpa said...
Lymie - the doctors are practicing - on us.

My adrenals are still shot from too much rifampin for too long.

I wonder if lower doses of dapsone would chip away at your pathogen though over a longer period of time. Rotate other abx with it at normal doses.

These double doses are not good practice.

Many of these LLMDs seem to prescribe much more for much longer. I'm pretty sure this is what is turning off the conventional medical community towards PTLDS patients.

I think Dr. Horowitz does exaggerate at times, but I was happy to see that he actually did a chart review and follow up on outcomes from his patients he put on this double dapsone. The outcomes weren't clearly defined, however 98% had improvement and almost half reached remission. Remission meaning symptoms dissolved at least for several months. While I wouldn't call his chart review thorough science it is at least better than other treatment methods in which we go into blind and rely on a handful on anecdotes at best.

I was planning on this being my last aggressive grasp at abx therapy. I liked that it was short and hard. Unfortunately, it seems to have been too much for me. I might go at a lower dose and slower pace. We will see. I'm tired of the abx treatment style, however, every time I go off them my symptoms come rushing back. When I'm on abx my symptoms don't subside but do improve. At the same time, long term abx use causes depression and profound fatigue for me. darned if you do. darned if you don;t.
Posted 2/24/2021 5:37 PM (GMT 0)
Sorry it didn't work out for you lymie. I know how disappointing it can be. Keep trying.
Posted 2/25/2021 1:09 AM (GMT 0)
Lymie24 and everyone else doing DDD, I give you serious credit. You are so brave and trying so hard. And I truly feel your frustration wanting to just be DONE with the insanity of all these meds! I was bit in 2016 and was really sick and nothing helped. I went to Germany and did whole body hyperthermia and was put into remission. I had several years of wellness. And I got bit again this past August and I feel like I’m the rat in the cage running on the wheel of antibiotics getting nowhere. Feels like a no end road. I got Lyme and Babesia again. The Babesia seems to be worse than the Lyme. Dr H is my LLMD and he’s been trying to get me to do disulfuram or DDD. I’m terrified to do either. I’m considering crazy stuff like some toxic tree frog poison called Kambo or going to Mexico for full red blood cell exchange. I can’t even fathom the endless cycle of antibiotics that I’m
On.... again. It feels very heavy and overwhelming. So I just have a lot of empathy for everyone on here going through this. It’s truly insanity.
Posted 2/25/2021 11:01 AM (GMT 0)
Wow - Evanston - I would love to hear an account of your experiences with the hyperthermic treatment.
what was involved - how long, how hot, any meds with it / abx or just the hyperthermic treatment alone - how hard was it to do - how long till you felt symptoms improve and then remission - and how complte was thsi remission - no symptoms at all?

I hear soo few accounts of what its actually like to go through, I would be really interested

Post Edited (Garzie) : 2/25/2021 8:43:57 AM (GMT-7)

Posted 2/25/2021 8:46 PM (GMT 0)

Evanston1 said...
Lymie24 and everyone else doing DDD, I give you serious credit. You are so brave and trying so hard. And I truly feel your frustration wanting to just be DONE with the insanity of all these meds! I was bit in 2016 and was really sick and nothing helped. I went to Germany and did whole body hyperthermia and was put into remission. I had several years of wellness. And I got bit again this past August and I feel like I’m the rat in the cage running on the wheel of antibiotics getting nowhere. Feels like a no end road. I got Lyme and Babesia again. The Babesia seems to be worse than the Lyme. Dr H is my LLMD and he’s been trying to get me to do disulfuram or DDD. I’m terrified to do either. I’m considering crazy stuff like some toxic tree frog poison called Kambo or going to Mexico for full red blood cell exchange. I can’t even fathom the endless cycle of antibiotics that I’m
On.... again. It feels very heavy and overwhelming. So I just have a lot of empathy for everyone on here going through this. It’s truly insanity.

Thanks for the kind words! That is very unfortunate that hyperthermia brought you into remission until you had ANOTHER darn tick bite. That is unbelievable. Would you do hyperthermia again? I've considered it before, but it seemed very expensive and the few anecdotes I could find were people that initially felt better after the treatment but relapsed in the months after.

It really is insanity. I feel like I'm living in a dream world sometimes. I imagine many people who get hit with life changing illnesses feel the same thing. I was 28 when I was bit. That was over 5 years ago. I was active, healthy, and extremely confident (prob bordering on cocky...that prob was an issue for me seeking help for my symptoms early on....sheeesh I'm an idiot...stupid macho guy garbage. Sometimes I reflect on what has happened and where I am at and it is still hard to believe. I have so much empathy for anyone going through this. It's rough.
Posted 2/25/2021 9:35 PM (GMT 0)
It is beyond rough. And yes, hyperthermia was as close to as curative a treatment I’ve ever done. I’m happy to connect with anyone who is interested in my experience. I just told my husband that if I’m still running in circles with antibiotics by June, I’m going back. I can’t deal with all the meds, side effects, guessing game that this is. My daughter had the hyperthermia as well. She was 11 at the time and she was the youngest person they’ve ever treated. And it was nothing short of a miracle for her. Her symptoms were 10000% pure Lyme. She was the perfect candidate for it. I was dealing with co infections so my results weren’t as instant as hers but full remission did come. I’m terrified to go anywhere in this world with these ticks. I truly feel like one more bite will put me in my grave. But these ticks are beyond minute. And I was checking religiously. But it was a bite in the middle of my back and I missed it. Kinda hard to see or feel the middle of my back. But I plow forward and I will get through this one way or another. We all will!!!
Posted 3/1/2021 6:08 PM (GMT 0)

Evanston1 said...
It is beyond rough. And yes, hyperthermia was as close to as curative a treatment I’ve ever done. I’m happy to connect with anyone who is interested in my experience. I just told my husband that if I’m still running in circles with antibiotics by June, I’m going back. I can’t deal with all the meds, side effects, guessing game that this is. My daughter had the hyperthermia as well. She was 11 at the time and she was the youngest person they’ve ever treated. And it was nothing short of a miracle for her. Her symptoms were 10000% pure Lyme. She was the perfect candidate for it. I was dealing with co infections so my results weren’t as instant as hers but full remission did come. I’m terrified to go anywhere in this world with these ticks. I truly feel like one more bite will put me in my grave. But these ticks are beyond minute. And I was checking religiously. But it was a bite in the middle of my back and I missed it. Kinda hard to see or feel the middle of my back. But I plow forward and I will get through this one way or another. We all will!!!

Hi Evanston,

Do you mind giving a short synopsis of your hyperthermia experience? If you would rather connect some other way let me know. Thanks!
Posted 4/1/2021 5:00 PM (GMT 0)
Hi everyone smile
Sorry if it’s been already mentioned before, I can’t track all these threads but what book should I order for Horowitz’s protocol? Just to be sure is it ‘How can I get better’?
Posted 4/1/2021 8:34 PM (GMT 0)
yep- his latest book - "How can i get better" is the one to go for. it is very good

his previous book "why cant i get better" was similar but the later one is more focussed on what steps to do - ie the how more than the why
Posted 4/2/2021 4:05 PM (GMT 0)

Evanston1 said...
It is beyond rough. And yes, hyperthermia was as close to as curative a treatment I’ve ever done. I’m happy to connect with anyone who is interested in my experience. I just told my husband that if I’m still running in circles with antibiotics by June, I’m going back. I can’t deal with all the meds, side effects, guessing game that this is. My daughter had the hyperthermia as well. She was 11 at the time and she was the youngest person they’ve ever treated. And it was nothing short of a miracle for her. Her symptoms were 10000% pure Lyme. She was the perfect candidate for it. I was dealing with co infections so my results weren’t as instant as hers but full remission did come. I’m terrified to go anywhere in this world with these ticks. I truly feel like one more bite will put me in my grave. But these ticks are beyond minute. And I was checking religiously. But it was a bite in the middle of my back and I missed it. Kinda hard to see or feel the middle of my back. But I plow forward and I will get through this one way or another. We all will!!!

Is there a way to contact or message you for some info regarding hyperthermia treatment? Any help would be appreciated.
Posted 4/2/2021 4:06 PM (GMT 0)

Garzie said...
yep- his latest book - "How can i get better" is the one to go for. it is very good

his previous book "why cant i get better" was similar but the later one is more focussed on what steps to do - ie the how more than the why

Thanks for the info smile
Posted 4/18/2021 3:33 PM (GMT 0)
A couple questions: How much does one appointment with dr. Horowitz cost (plus additional tests)? Is he still treating new patients? Any contact information or e-mail where I can reach him? I just got his book but need more time to properly study it. Besides the dapsone protocol any other protocols for Lyme persisters that you can recommend so I can suggest it to my LLMD? Thanks in advance.
Posted 4/18/2021 7:21 PM (GMT 0)
Horowitz's office recently announced that they onboarded a new PA and are taking new patients. I do not believe that new patients would actually be treated by Horowitz himself. The email that I was sent indicated that the new patient appointment was $2-3k, after which follow up appointments are more or less standard rate, something like $400/30 minutes if memory serves.

They are only open for like three and half days per week.

My assessment was that the exorbitant fee you pay is basically because of Horowitz's reputation. Maybe I would consider it if I was local to the area.

Anne, if you provide me with your contact info, I can privately share the text of the email that I received from them. (I would note that it also took them a while to respond to my inquiry.)
Posted 4/19/2021 2:58 AM (GMT 0)
“ The email that I was sent indicated that the new patient appointment was $2-3k”

Holy - that’s a lot!
Posted 4/19/2021 2:59 AM (GMT 0)

AnneSommers said...
A couple questions: How much does one appointment with dr. Horowitz cost (plus additional tests)? Is he still treating new patients? Any contact information or e-mail where I can reach him? I just got his book but need more time to properly study it. Besides the dapsone protocol any other protocols for Lyme persisters that you can recommend so I can suggest it to my LLMD? Thanks in advance.

If you email me - I can give you some llmd contacts that are in your State.
Posted 6/30/2021 12:55 PM (GMT 0)

Evanston1 said...
It is beyond rough. And yes, hyperthermia was as close to as curative a treatment I’ve ever done. I’m happy to connect with anyone who is interested in my experience. I just told my husband that if I’m still running in circles with antibiotics by June, I’m going back. I can’t deal with all the meds, side effects, guessing game that this is. My daughter had the hyperthermia as well. She was 11 at the time and she was the youngest person they’ve ever treated. And it was nothing short of a miracle for her. Her symptoms were 10000% pure Lyme. She was the perfect candidate for it. I was dealing with co infections so my results weren’t as instant as hers but full remission did come. I’m terrified to go anywhere in this world with these ticks. I truly feel like one more bite will put me in my grave. But these ticks are beyond minute. And I was checking religiously. But it was a bite in the middle of my back and I missed it. Kinda hard to see or feel the middle of my back. But I plow forward and I will get through this one way or another. We all will!!!

I'm also researching cynics for hyperthermia. I'm stuck between sanoviv and st george. I was a bit wary of being given IV antibiotics for 10 days at st george (only 2 times in sanoviv, during hyperthermia) as my body and immunity are already so weak I'm worried if this high dose IV Abx and hyperthermia will hurt me if I can't detox enough Have you and especially your daughter experienced any side effects after this treatment? How did you choose between st george and sanoviv, which would you prefer right now? I would be grateful if you could talk a little bit.
Posted 2/21/2022 4:49 PM (GMT 0)
Hello...curious if you were able to complete the Dapsone treatment. If so, what was the out come?

I just started, in week two. I have extreme fatigue and muscle pain. My Lyme abs co-infections are bad. Dr said it’s Serve Neurological Lyme. I have every symptom there is, also use walker 24/7 due to balance
Posted 2/21/2022 8:57 PM (GMT 0)

BlondieStrong said...
Hello...curious if you were able to complete the Dapsone treatment. If so, what was the out come?

I just started, in week two. I have extreme fatigue and muscle pain. My Lyme abs co-infections are bad. Dr said it’s Serve Neurological Lyme. I have every symptom there is, also use walker 24/7 due to balance

Hey there,

I was unable to complete the protocol. I think I only made it to about day 28 or so. I never got to the double dapsone portion. I was in a weakened state emotionally/mentally and physically with state of my condition when I tried this protocol. I got to the point where my nerves were shot, my heart was racing, I had a feeling of doom and thought I was going to die. I ended up going to the ER. I think I would have a better shot at it today, but it is extremely aggressive.

Post Edited (Lymie24) : 2/21/2022 2:01:35 PM (GMT-7)

Posted 7/25/2022 5:09 PM (GMT 0)
a patient following this DD protocol posted this up on the bartonella facebook group - so i thought i would share it here - as it shows some of the needed supporting therapies to help deal with the double dapsone

VIEW IMAGE
Posted 7/25/2022 6:54 PM (GMT 0)
Thank you very much for posting that Garzie. I wonder if the supported therapies are needed for (is it quadruple?) dapsone if you just do it for 4 days, what do you think?
Posted 7/25/2022 11:37 PM (GMT 0)
yep - i think they are used in the high dose pulsed regime also - in fact i think that what the guy that posted thsi was trying to work up to doing - but only got half way on this first attempt ( i dont think anyone should jump right in at the high dose pulse dapsone - without first trying the lower dosed regimes - thats how horowitz uses it - i think only those that fail the other approaches go onto the double dose and higher dose)

will try to find the other info on the supportive stuff
Posted 7/25/2022 11:39 PM (GMT 0)
here you go - this is what he was taking and his oxygen saturation still dropped to 90% - which i guess is the lower limit of what is regarded as tolerable / OK

seems like a blood oxygen monitor is part of the approach

VIEW IMAGE
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