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Dr H dapsone study published

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Posted 11/15/2018 12:23 PM (GMT -5)

Lapis_29 said...
I think all the talk about biofilms and persister cells is off track

the reason why dapsone and stevia work where other ABX dont is simple - they cross the BBB and get into the central nervous system. Its that simple

Lyme bugs eventually work their way into the nerve tissues and brain (CNS) , once that happens traditional ABX like Doxy wont kill it because they dont cross the BBB and therefore dont get into the nerve tissues.

Thats where dapsone and stevia come in, they cross the BBB and can kill the lyme bugs in the nerve tissue.

Biofilms? Never seen any hardcore evidence this is a real problem.

Even persister cells. Considering persister cells do eventually become active again, theoretically You could do pulsed Doxy for months on end and eventually get 100% cured. But that does not happen for everyone. Why? Because the lyme bugs are hiding in the nerve tissue thats why.

If you have chronic lyme you MUST do some type of treatment that crosses the BBB and kills the bugs in the brain/nerves. If you dont you wont heal.

All this talk of persisters and biofilms is over thinking a simple problem.

Thats my take on it.

Except that many people haven’t healed by using the usual abx - minocycline is a commonly used antibiotic - many lyme patients take/have taken it.
Dr. J. has found success with these persister meds....and has been prescribing them for over at least 5 years now. I can't remember exactly, but I did find an older thread from 2013 - and the forum member was taking them then.
It's just 'new' to Dr. H and others - and I guess that's why they're making a big deal about it.

Others have used doxy as their main med and gotten well.

I don’t think it’s all about blood/brain barrier penetration though.

I used Rifampin paired with minocycline for many many months and plateaued.

I didn’t know dapsone did cross blood/brain barrier. Thanks for mentioning that piece.
Posted 11/15/2018 2:40 PM (GMT -5)

Lapis_29 said...
I think all the talk about biofilms and persister cells is off track

the reason why dapsone and stevia work where other ABX dont is simple - they cross the BBB and get into the central nervous system. Its that simple

Stevia doesn't cross the blood brain barrier. It doesn't even get absorbed from the gut.

Many antibiotics cross the BBB. Also I took valproate, which readily crosses the BBB and kills the bacteria. That was the easy part. The hard part was dealing with the itchiness and nosebleeds and the other side effects that valproate caused.

At this point, I have no neurologic effects from Lyme disease. All of the persisters are in my muscles and joints. I am still taking antibiotics, and every few days I get a Herxheimer reaction in another spot, usually in my arms or legs. The antibiotics killed most of it, but this infection is proving very difficult to get rid of completely. I would love to know of the "simple" solution to this problem, because just getting Lyme disease out of the nervous system isn't sufficient.
Posted 11/15/2018 2:43 PM (GMT -5)

Quin said...

Lapis_29 said...
I think all the talk about biofilms and persister cells is off track

the reason why dapsone and stevia work where other ABX dont is simple - they cross the BBB and get into the central nervous system. Its that simple

Stevia doesn't cross the blood brain barrier. It doesn't even get absorbed from the gut.

Many antibiotics cross the BBB. Also I took valproate, which readily crosses the BBB and kills the bacteria. That was the easy part. The hard part was dealing with the itchiness and nosebleeds and the other side effects that valproate caused.

At this point, I have no neurologic effects from Lyme disease. All of the persisters are in my muscles and joints. I am still taking antibiotics, and every few days I get a Herxheimer reaction in another spot, usually in my arms or legs. The antibiotics killed most of it, but this infection is proving very difficult to get rid of completely. I would love to know of the "simple" solution to this problem, because just getting Lyme disease out of the nervous system isn't sufficient.

Have you changed up your protocol? Treated confections?
Posted 11/15/2018 2:55 PM (GMT -5)

Girlie said...
Have you changed up your protocol? Treated confections?

The lab tests could never find any coinfections. I was possibly exposed to other things, but after a year of antibiotics I have no symptoms associated with typical Lyme coinfections, so I assume anything else I got is gone now. At this point I only have symptoms of Lyme disease, it's the typical symptoms (muscle aches and arthritis like symptoms), and in the usual places that Lyme disease tends to get into.

If I can't get rid of this with oral abx, I will consider going to Dr J in a few months, and trying what you did, although I'm a bit reluctant to do that because of the risk of kidney problems.
Posted 11/15/2018 3:01 PM (GMT -5)

Quin said...

Lapis_29 said...
I think all the talk about biofilms and persister cells is off track

the reason why dapsone and stevia work where other ABX dont is simple - they cross the BBB and get into the central nervous system. Its that simple

Stevia doesn't cross the blood brain barrier. It doesn't even get absorbed from the gut.

Many antibiotics cross the BBB. Also I took valproate, which readily crosses the BBB and kills the bacteria. That was the easy part. The hard part was dealing with the itchiness and nosebleeds and the other side effects that valproate caused.

Valproate isn't an antibiotic. How did this kill bacteria?
Posted 11/15/2018 3:03 PM (GMT -5)

Quin said...

Girlie said...
Have you changed up your protocol? Treated confections?

The lab tests could never find any coinfections. I was possibly exposed to other things, but after a year of antibiotics I have no symptoms associated with typical Lyme coinfections, so I assume anything else I got is gone now. At this point I only have symptoms of Lyme disease, it's the typical symptoms (muscle aches and arthritis like symptoms), and in the usual places that Lyme disease tends to get into.

If I can't get rid of this with oral abx, I will consider going to Dr J in a few months, and trying what you did, although I'm a bit reluctant to do that because of the risk of kidney problems.

Quin - the lab tests for the coinfections aren't reliable. Many Dr.'s do clinical diagnoses for them.
Rarely do people just have lyme.

Just want to mention - seeing Dr. J doesn't mean you'll be on the persister protocol. I never had any kidney issues prior to that...and I've been on many different abx and also mepron.

Dr. J treats many patients without having them on the persister protocol.

Remind me: you're background...how long were you sick prior to starting treatment?
And what protocols were you on for lyme?
Posted 11/15/2018 3:14 PM (GMT -5)

Garion said...

Valproate isn't an antibiotic. How did this kill bacteria?

This is something of a mystery.

Valproate is known to have some weak antimicrobial activity in that it causes cell membranes to leak and causes oxidative stress to certain microorganisms. It's rarely used for this purpose, as most bacteria are resistant to this. Surprisingly, I've found that borrelia burgdorferi is not resistant to it at all.

I think it would be a interesting target for future research, if someone could figure out why Lyme disease is so susceptible to this, and if there are any related drugs that would also work.
Posted 11/15/2018 3:24 PM (GMT -5)
Girlie - I know the antibody tests aren't always reliable. Bartonella was suspected, but the antibiotics that I took, including clarithromycin and rifampin, likely would have gotten rid of a bartonella infection. I don't currently have any symptoms that would be suggestive of bartonella.

Whatever else I got seems to be gone now. I really just need to get rid of the borrelia persisters.
Posted 11/15/2018 3:25 PM (GMT -5)

Quin said...

Garion said...

Valproate isn't an antibiotic. How did this kill bacteria?

This is something of a mystery.

Valproate is known to have some weak antimicrobial activity in that it causes cell membranes to leak and causes oxidative stress to certain microorganisms. It's rarely used for this purpose, as most bacteria are resistant to this. Surprisingly, I've found that borrelia burgdorferi is not resistant to it at all.

I think it would be a interesting target for future research, if someone could figure out why Lyme disease is so susceptible to this, and if there are any related drugs that would also work.

Ive also questioned the Valproate. So did a LL Dr. put you on the valproate for something else (ie mood stabilization) and you feel it's working to treat lyme?
Posted 11/15/2018 3:34 PM (GMT -5)
The valproate wasn't from a LL Dr. It was just one of many things I took. It caused a huge Herxheimer reaction, more than I got from anything else.
Posted 11/15/2018 3:44 PM (GMT -5)
Stevia, Biocidin, etc are claimed to penetrate BBB through the mouth, esophagus, before they reach gut. thats why they are suggested to take underneath the tongue.

Interesting article on Stevia:
http://www.lymeknowledge.com/stevia-guide-for-lymies/
Posted 11/15/2018 5:04 PM (GMT -5)

sierraDon said...
Stevia, Biocidin, etc are claimed to penetrate BBB through the mouth, esophagus, before they reach gut. thats why they are suggested to take underneath the tongue.

Interesting article on Stevia:
http://www.lymeknowledge.com/stevia-guide-for-lymies/

stevia definitely crosses the BBB

Somebody said...


Your central nervous system is composed of your brain and spinal cord and serves as the collection point for nerve impulses. Stevia contains beta-caryophyllene and caryophyllene oxide, compounds that may depress the activity of your central nervous system. Beta-caryophyllene epoxides may depress central nervous system activity by crossing the blood-brain barrier and binding to cellular receptors that regulate neurological impulses within your brain. More research is needed to determine the long-term effects of stevia on both brain and spinal cord.

Posted 11/15/2018 5:11 PM (GMT -5)

Quin said...


Whatever else I got seems to be gone now. I really just need to get rid of the borrelia persisters.

So you believe these persistes are living in your joints and muscles?

Then i would mix a lyme killing substance (cinnamon, oregano oils, or maybe stevia) in with some DMSO and apply topically to the area. DMSO will take delivery the medicine deep into the tissues/joints. Really surprised more people arent' doing this.
Posted 11/15/2018 8:57 PM (GMT -5)

Girlie said...

bluelyme said...
seems like a guide for non-llmds maybe? msids model ...i dunno if the lasting effects of dap will stand the test of time...

Gosh, I hope they do....

I am on Daraprim and Rifabutin along with the Dapsone... (and Ceftin)

How are you doing on the new treatment? Are you responding well?
Posted 11/15/2018 9:10 PM (GMT -5)

SeanIRL said...

Girlie said...

bluelyme said...
seems like a guide for non-llmds maybe? msids model ...i dunno if the lasting effects of dap will stand the test of time...

Gosh, I hope they do....

I am on Daraprim and Rifabutin along with the Dapsone... (and Ceftin)

How are you doing on the new treatment? Are you responding well?

Well, I responded alright - the second cycle...I almost went to the ER. My CNS must have been extremely inflamed. I had jerking of my arms and hands that I couldn't control...I'm thinking mild seizure. My temp went up (I think it was 103 F) - I've not had a temperature since 2013...not ever with my herxes...and my pulse was something like 110 bpm for 6-8 hours. Full body and head pain. My scalp was sore to touch. Stayed up all night...couldn't sleep...
Finally resolved that afternoon. It took a week for me to fully recover. This meant putting off Week 2 of my other meds - until Week 3

At that point I contacted the clinic and said I'm scared to do that again...and could I do three days instead of 5 days for my next cycles.
They agreed.

Then on Cycle 3 I had a reaction...but not quite so bad - took me a week to recover again.
This time no fever...no rapid heart rate...no jerking....just some body and head pain.

I'm now on Cycle 4 - so far so good.

The good news is I have improved.....after recovering from cycle 3...I've been feeling better...some symptoms have lessened...(head pressure, shivering, and a few others)

I haven't felt this optimistic for a few years....fingers crossed.
Posted 11/15/2018 9:25 PM (GMT -5)

Lapis_29 said...
So you believe these persistes are living in your joints and muscles?


That's the only place I'm getting inflammation and herx.

Lapis_29 said...
Then i would mix a lyme killing substance (cinnamon, oregano oils, or maybe stevia) in with some DMSO and apply topically to the area. DMSO will take delivery the medicine deep into the tissues/joints. Really surprised more people arent' doing this.


Since stevia isn't orally active, you think dissolving it in DMSO and putting it on your skin is going to work. You're surprised more people aren't doing this. Well... that seems messy and there's no evidence that it works.

I am taking clarithromycin, amoxicillin, and valproate, and not getting enough penetration deep into my muscles where the bacteria are hiding. What makes you think something else is going to work better?

Post Edited (Quin) : 11/15/2018 7:33:12 PM (GMT-7)

Posted 11/15/2018 11:15 PM (GMT -5)

Quin said...

Since stevia isn't orally active, you think dissolving it in DMSO and putting it on your skin is going to work. You're surprised more people aren't doing this. Well... that seems messy and there's no evidence that it works.

I am taking clarithromycin, amoxicillin, and valproate, and not getting enough penetration deep into my muscles where the bacteria are hiding. What makes you think something else is going to work better?

are familiar with DMSO and how it works? it penetrates thru the skin and takes whatever compound its mixed in deep deep into the tissues. Nothing else does this.

You can take all the oral ABX in the world but they wont get into the joints or deep into the muscles where lyme like to live
Posted 11/15/2018 11:26 PM (GMT -5)

Lapis_29 said...

Quin said...

Since stevia isn't orally active, you think dissolving it in DMSO and putting it on your skin is going to work. You're surprised more people aren't doing this. Well... that seems messy and there's no evidence that it works.

I am taking clarithromycin, amoxicillin, and valproate, and not getting enough penetration deep into my muscles where the bacteria are hiding. What makes you think something else is going to work better?

are familiar with DMSO and how it works? it penetrates thru the skin and takes whatever compound its mixed in deep deep into the tissues. Nothing else does this.

You can take all the oral ABX in the world but they wont get into the joints or deep into the muscles where lyme like to live

That’s why the skin needs to be clean and also the dmso can’t be contaminated - ie whatever utensil you use to apply it should be reserved for it only.

I don’t know about the joints and muscles not getting penetrated with abx.
If that’s the case how come muscle and joint symptoms go away?
Posted 11/16/2018 7:52 PM (GMT -5)

Girlie said...

I don’t know about the joints and muscles not getting penetrated with abx.
If that’s the case how come muscle and joint symptoms go away?

Valproate actually did get to a lot of the bacteria hiding in my joints and muscles. It made me herx in different places than before.

Valproate is a small molecule and seems to be able to get into a lot of places that other meds can't. Daraprim and dapsone are also relatively small molecules (compared to most antibiotics) and I suspect this is why people are having success with these.

Lyme disease is just very persistent and hard to get rid of completely. Additionally, all of these meds are "strong" stuff in terms of risk of side effects.

I suspect any of these might be able to eliminate the infection if taken for long enough, but I am really not looking forward to months of this. If I can't tolerate the side effects of valproate, I will probably try dapsone, but neither is a great thing to be taking for long periods of time.
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