Dr. Horowitz on Chronic Lyme

[Helen]

Are those with chronic Lyme who are tougher to treat more prone to POTS? What about PEM? Just brainstorming. I’d love to hear any ideas.

I can just tell about myself, n=1. I have no problems with POTS, but I do have PEM. Is there possibly a difference in POTS symptoms (as well as there are others that differ) due to the kind of Borrelia bacterias that caused the Lyme infection?

I agree that your dose @duncan sounds very high, at least according to Dr Horowit´s protocol.

( On page 104 in his latest book he says that the full dose is 100 mg , but it may take months for some patients to get to the full dose due to Herx...reactions. He normally increases the dose slowly, at least over two weeks, from 25 mg to 100 mg daily. There are also other antibiotics that are used in the protocol to get the best effect. FWIW and if you didn´t already know this).

 

[duncan]

Ok, my bad. I just double checked. It's 100 mg, not 500. I am so used to 500 mg anymore it seems. I cannot trust my memory, regardless, which is why I checked.

I am starting my...second or third month on dapsone? Also on azythro for the bartonella, I think. And plaquenil. But I've tried IV Rocephin and doxy of course and cefdinir and flagyl for the bartonella and a bunch of other shit over the years. I could never get more than 30 days IV Roecphin approved, and my ID guy is convinced my brain is riddled with Bb so he's doing the best he can with the whole bbb thing (despite what those silly studies equating oral abx with parenteral treatments contend.)

 

[Helen]

@duncan , do you also take biofilm busters as e.g. stevia (Nutramedix) and Biofilm defense/Serrapeptase? Horowitz stresses the importance of taking them too.
Edit: KDM once saw serious adverse reactions to Serrapeptase and suggested Biofilm defense instead.

 

[duncan]

Nah. It's hard enough to get this stuff. That could help explain why I am an unmitigated treatment failure.

Also, I don't take daposne because of Horowitz; I take it because of Zhang, and Zhang is why Horowitz gives it out, and Horowitz is unsure of the protocol because it's uncharted territory. We are all kinda winging it here.

 

[Helen]

That could help explain why I am an unmitigated treatment failure.

Could be. There are some pictures of biofilm that convinced me to take the biofilm busters. The bacterias hide inside and can´t be reached by most antibiotics. Horowitz´ protocol is based on Zhang´s study .

 

[duncan]

Only Zhang was in vitro. There is a clinical leap of practice between in vitro and in vivo therapy.

 

[Dufresne]

Ok, my bad. I just double checked. It's 100 mg, not 500. I am so used to 500 mg anymore it seems. I cannot trust my memory, regardless, which is why I checked.

I am starting my...second or third month on dapsone? Also on azythro for the bartonella, I think. And plaquenil. But I've tried IV Rocephin and doxy of course and cefdinir and flagyl for the bartonella and a bunch of other shit over the years. I could never get more than 30 days IV Roecphin approved, and my ID guy is convinced my brain is riddled with Bb so he's doing the best he can with the whole bbb thing (despite what those silly studies equating oral abx with parenteral treatments contend.)

In the video Horowitz makes the point that rifampin, a tetracycline, and dapsone seems to be especially effective. This combo would hit your borrelia and bartonella quite nicely, I imagine. The plaquenil is also something he includes with all his intracellular protocols so that fits, too. I'd be tempted to opt for the minocycline over doxy in this protocol, though. For one it gets into the brain better. You also don't run into the doxy-rif interaction that might decrease doxy levels.

 

[duncan]

Yes! I took rifampin just recently too! And mino!

God, I'm such a Scarecrow these days...

The rifampin was really for the bartonella, which I think he thinks is on the run if only because those titers have not risen. But my Lyme values have risen by 50 to 100%, and that is AFTER IV Rocephin. The dapsone is definately to try to corall the Bb - unless I've leprocy.

 

[Helen]

Only Zhang was in vitro. There is a clinical leap of practice between in vitro and in vivo therapy.

I´m aware of that. Did you see the clinical study that Horowitz made on the combination including Dapsone? The three antibiotics are supposed to be taken at the same time as you might have seen.

 

[duncan]

Maybe. I don't recall. @Helen , I have seen a gazillion recommendations on combinations over the years. I am sorry that the conclusion I've reached, personnally, is that no body knows shit, and that it's all a crap shoot.

I am probably wrong, though, so there is that.

I'm sorry, I don't mean to sound negative. At least the ILADS guys are trying.

 

[Helen]

@duncan , it seems though as this protocol has helped persisters, particularly them also having Babesia. If nothing has helped, I think this should be the best protocol so far (including biofilm busters) . I recommend reading H´s latest book. I do understand that you are sceptic after many trials. ( Dapsone treatment should be supervised with some lab tests ). Fingers crossed that your ongoing treatment will help. Please share your experiences if you don´t mind.

 

[duncan]

I want his book, and also Ken Leigner's, who I've talked to a few times and really like as well.

Didn't intend to come off sounding so sour. I am very hopeful with all the innovative studies - without the NIH's help, and despite the hurdles thrown up by some unnamed agencies - that have been coming out.

 

[Dufresne]

I figure I'll post this here.

So two weeks on dapsone and friends seems to have decreased my sensitivity problems, as well as increased my PEM threshold. These are the two symptoms that had never improved in any sustainable way with all the treatments I've tried. I've confirmed to my satisfaction that Lyme is the biggest factor perpetuating these core symptoms. This is something I've been wondering about for years. And to now have treatment and see such an improvement in just two weeks!

The shit news:
I had to stop taking all antibiotics because I developed a case of hyperacusis with mild tinnitus. I've been off all ABX for a month now. I even had to come off the 50mg of baclofen I'd been taking because that was also aggravating the hyperacusis. Symptomatically the ears are returning to normal. Unfortunately they're remaining somewhat sensitive for the time being so I'm limited in what I can do. I continue to take chloroquine and primaquine in an effort to maintain my babesia gains over the last year and a half, and this doesn't appear to be a problem.

Being off antibiotics for the first time in over a year is interesting. My gut went to hell, so I'm working the probiotics and fermented foods. I got through a bottle of Lyme-specific transfer factor. I'm taking a little vitamin D and C, and I'm trying to eat well and keep my sugar down.

I'd appreciate any suggestions regarding immune enhancement during my downtime. Also does anybody know if antigen-specific transfer factors' supposed benefits persist after taking the product? I mean the idea is that the TF in colostrum is supposed to transfer immunity from mother to offspring; presumably this has some lasting effect (?). I ask because it's a rather expensive product.

 

[Helen]

I'd appreciate any suggestions regarding immune enhancement during my downtime.

Gamma globulin injections? My doctor has prescribed injections, weekly.

 

[duncan]

Some so-called Lyme experts are recommending immunosupressants, like Plaquenil. I am taking that plus dapsone plus azithro. One of those is frequently destroying my stomach at night, so I will be modifying therapy soon.

 

[msf]

I think Zhang´s work is the most promising development in Lyme treatment for a very long time. I am just slightly jealous that no one is doing the same for Yersinia - hopefully once the concept is proven in a disease like Lyme, other bacterial diseases will then be considered as possibly requiring the same kind of treatment. It will be interesting to see if the same anti-persister drugs work in most bacterial diseases - dapsone seems to work in both leprosy and Lyme, but perhaps it just affects the l-diseases!

 

[Jesse2233]

Any dapsone updates?

 

[duncan]

@Jesse2233 , I took it for about three months, along with a couple other abx. No pulsing. It didn't help. Was pretty tough on my stomach. Three out of four Lyme titers actually rose between right before starting dapsone, and right after.

But I have an IgG 1 deficiency, so one must factor that into the equation.

 

[Learner1]

Was the Lyme possibly reacting to the dapsone which is why it increased? I've had other titers increase after interventions meant to kill them.

My doctor had sent me Horowitz's video about dapsone and persisters... We're considering it for chlamydia pneumoniae, which is scellular, not Lyme.

Has anyone else had experience, positive or negative, with it?

 

[duncan]

Was the Lyme possibly reacting to the dapsone which is why it increased? I've had other titers increase after interventions meant to kill them.

In theory, yes. All four of my different Lyme metrics jumped right after I received IV Rocephin as well.