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Link to 4th. Annual Lyme Disease in the Era of Precision Medicine Conference

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Posted 10/20/2019 7:29 AM (GMT 0)
https://www.facebook.com/lymemind/videos/837344113388840/

It's 7 hours long! Just happened yesterday. Has lots of the all stars in it.
Posted 10/20/2019 8:13 AM (GMT 0)
Where’s the Kleenex ?!?!
That song made me cry!!
Posted 10/21/2019 9:46 AM (GMT 0)
Didnt watch all of it but watched Dr. H.

Some cool snapshots (but you'll need to watch 10-15mins to get the whole picture):
At 1hr and 32 min explores abx combination against single abx controls that were effective at killing Bb;
Results were that quadruple abx Doxy, Rifampin, Dap, and Azith were most effective, second most was Doxy, Rifampin, Dapsone. A common theme was that dapsone is pretty good at killing persister cells / reducing biofilm.

Funnily enough this snippet also confirms why i'm doing better (i'm on an aggressive protocol using 4+ abx including the ones above).

8 hours is quite a lot - Would be awesome if other members could chip in on what they found interesting / worth watching if they watched it.

Great share - thanks for linking Sheekster!
Posted 10/21/2019 10:06 AM (GMT 0)
1hr 50m
- reckons that high dose dapsone helped many into remission but the 40 that failed still had issues with Bart and Babs.
- discusses combination of DSF + doxy, rifampin, dapsone for recalcitrant Bart having 'miraculous' results. But concludes the patients may be coming off DSF and is pending further results.


hmmm, seems as if DSF does have some anti-bart properties...
Posted 10/21/2019 8:15 PM (GMT 0)
awesome, thanks for this ! ill listen to it all !
Posted 10/21/2019 9:50 PM (GMT 0)

JovaLyme said...
That is exactly the protocol I was thinking of trying. I've got rifampin and dapsone in my basket on ADC and disulfiram on the way to me. I can probably get my doctor to prescribe the doxy. Did they say what dose of those meds had the best effects?

Dr H said some people were successful only with a high dose of dapsone - 200 mg per day. That's quite risky due to the blockade of folate metabolism.

Bacteria can easily develop resistance to rifampin. Sometimes it works, sometimes it doesn't. I got a bart infection that was completely resistant to it. Also you need to beware of adrenal stress due to the CYP3A4 induction.

You're planning on taking a lot of potent stuff, you need to be careful.
Posted 10/21/2019 10:12 PM (GMT 0)
Dr J doesn’t agree with the necessity of 200 mg of Dapsone.

He prescribes 50 mg doses.

Also if Rifampin isn’t effective - try Rifabutin
Posted 10/21/2019 11:08 PM (GMT 0)
Just an FYI - I couldn’t find your post about ADC not having Rifabutin - but it does


https://www.alldaychemist.com/catalogsearch/result/?q=ributin
Posted 10/21/2019 11:16 PM (GMT 0)
Rifampin 300 twice daily or 600 once daily.

I think the 300 twice is more often prescribed.
Posted 10/21/2019 11:35 PM (GMT 0)

JovaLyme said...
Thanks guys.

My disulfiram has finally reached the UK and been released by customs, so I will be starting it in a couple of days I expect.

Before I add anything else, I need to see how that affects me. I've ordered some doxycycline, dapsone, bactrim, rifampin and methylene blue. These are the drugs I'm going to be treating myself with in the coming months, but disulfiram is going to be my first attempt.

I will gradually work it up and then when I feel it has taken me as far as it can go, I will possibly try the 4 med combo Horowitz suggests with low dose dsf and dapsone.

What are typical doses for rifampin? I will probably do the doxy at 400mg or possibly 200mg to start.

I'd recommend starting the doxy or rifampin before disulfiram, as disulfiram can make bart flare, but doxy usually doesn't and can kill bartonella. Also you should probably make sure the rifampin works, as bacteria can be resistant to it.

Usual warnings about kidney problems from bactrim, CYP3A4 from rifampin, and folate problems from dapsone.

I found 200 mg per day minocycline sufficient. I didn't try doxy, and I don't know if the dosing is exactly equivalent, but 400 mg might be more than necessary.

Girlie said...
Rifampin 300 twice daily or 600 once daily.

I think the 300 twice is more often prescribed.

Rifampin doesn't last long, it usually comes out within a few hours. This is obvious from the orange pee. So that's the reason for dosing more than once a day.
Posted 10/22/2019 12:21 AM (GMT 0)
“ I found 200 mg per day minocycline sufficient. I didn't try doxy, and I don't know if the dosing is exactly equivalent, but 400 mg might be more than necessary.“

400 mg doxy daily is the appropriate dose for Lyme.
200 mg mino daily is appropriate dose for Lyme.
Posted 10/22/2019 12:59 AM (GMT 0)

JovaLyme said...

Girlie said...
“ I found 200 mg per day minocycline sufficient. I didn't try doxy, and I don't know if the dosing is exactly equivalent, but 400 mg might be more than necessary.“

400 mg doxy daily is the appropriate dose for Lyme.
200 mg mino daily is appropriate dose for Lyme.

Have you used mino Girlie? I think I read an old post from you saying it turned your teeth grey!

It seems to hit people quite hard in the brain from what I've read. I'm a little scared of doing that.


====================


Yup - I have used mino and am still using it now that I’m on the maintenance protocol. I take mino 3 days a month.

I took it daily in 2015 and part of 2016 with my previous LLND

Then back on it in Feb 2018 - but only taking it 6 days per month at the most.

Yes it turned my teeth a greyish colour - not too bad tho.
Unfortunately it’s not like the doxy staining where you can have it removed at the dentist... the mino seems to stain under the enamel - I read it can also stain the thyroid and bones.

It appears to be diminishing now that I’m only on it a few days a month.

Yes it hits the brain hard - when I first went on it, I was dizzy and off-balance.
That’s why it’s so effective for brain stuff...penetrates blood brain barrier good... one of the best.
Posted 10/22/2019 1:42 AM (GMT 0)

JovaLyme said...
I really don't know how to go about this to be honest. I nearly ordered some minocycline, but read a few horror stories about it on here.

Most of the complaints about neurologic symptoms with minocycline seem to be herx. Other than that the rate of side effects seem to be low. Dapsone, bactrim, rifampin have much higher rates of side effects than doxycycline or minocycline.

JovaLyme said...
The problem I have is that I have had Lyme for at least 14 years without any treatment apart from 3 weeks of doxy, which I've just finished. By my reckoning, I will have a heck of a lot of bacteria in biofilms by now and that's kind of what I want to target. Dapsone and DSF hit them, so I want to wake this stuff up and then see where I stand.

The big problem with biofilm and cyst form is that it takes a long time to kill the bacteria. I remember when I first took valproate. For 2 weeks, nothing happened. Then, BOOM.... huge herx. People report this effect with disulfiram too.

JovaLyme said...
I've read that less than 400mg of doxy for chronic Lyme just doesn't have much effect and puts borrelia in to cyst form?

Yes it will put it into cyst form, but that shouldn't matter if you're taking disulfiram.

Girlie said...
400 mg doxy daily is the appropriate dose for Lyme.
200 mg mino daily is appropriate dose for Lyme.

Why is that? The elimination half-life is not significantly different between doxy and mino.

JovaLyme said...
Have you used mino Girlie? I think I read an old post from you saying it turned your teeth grey!

Rifampin stained my teeth much worse than minocycline.
Posted 10/22/2019 2:11 AM (GMT 0)
“Most of the complaints about neurologic symptoms with minocycline seem to be herx. Other than that the rate of side effects seem to be low. Dapsone, bactrim, rifampin have much higher rates of side effects than doxycycline or minocycline.”


Mine wasn’t a herx - it was when I first started it and got better after awhile on it (a couple weeks)
Posted 10/22/2019 2:22 AM (GMT 0)
Quin: “ Girlie said...
400 mg doxy daily is the appropriate dose for Lyme.
200 mg mino daily is appropriate dose for Lyme.

Why is that? The elimination half-life is not significantly different between doxy and mino.

—————————————
I can’t tell you why - but it is. Maybe someone else can.
They’re same class but not identical drugs. There’s more to it than half life....
I don’t know anyone taking 400 mg of mino... have not heard of a Dr prescribing it either.
Posted 10/22/2019 3:30 AM (GMT 0)
minocycline made me weird and I had to stop it.
There's some weird side effect on the label that causes men to be untrustworthy of attractive women?? I don't know if I had that, but it made me felt weird inside and I stopped it after a few days.

https://www.dailymail.co.uk/sciencetech/article-2317005/Researchers-discover-drug-stop-husband-cheating.html
Posted 10/22/2019 4:49 PM (GMT 0)
People whose neuro symptoms improve with minocycline probably had toxoplasmosis.
Posted 10/22/2019 4:50 PM (GMT 0)

Quin said...
People whose neuro symptoms improve with minocycline probably had toxoplasmosis.

Huh?

Minocycline is effective for neurolyme.
Posted 10/22/2019 5:01 PM (GMT 0)
Yes, but minocycline has also been proposed for schizophrenia and other things.
Posted 10/22/2019 5:30 PM (GMT 0)

Quin said...
People whose neuro symptoms improve with minocycline probably had toxoplasmosis.

Or most likely Lyme disease - ie neurolyme
Posted 10/22/2019 10:43 PM (GMT 0)
I'm uploading the video to my Lyme archive smile Just in case it gets removed from facebook, I will share the link here when I'm done.
Posted 10/26/2019 4:57 AM (GMT 0)

Girlie said...
Dr J doesn’t agree with the necessity of 200 mg of Dapsone.

He prescribes 50 mg doses.

Dr H on dapsone dosage

https://youtu.be/zy5__eozdgg?t=904
Posted 10/26/2019 6:24 AM (GMT 0)

Quin said...

Girlie said...
Dr J doesn’t agree with the necessity of 200 mg of Dapsone.

He prescribes 50 mg doses.

Dr H on dapsone dosage

https://youtu.be/zy5__eozdgg?t=904

Dr H said out of 110 people - 70 were in remission. That’s 63 % right? The other 40 people he discovered they had bart and Babesia coinfections.

So perhaps Dr J’s method of treating Babesia first, and then treating Bart/Persisters with the Dapsone and Daraprim allows the lower dose of Dapsone at 50 mg.

He has good results with it.
Posted 10/26/2019 12:44 PM (GMT 0)

Quin said...
People whose neuro symptoms improve with minocycline probably had toxoplasmosis.

My brain function improved after 7 days of minocycline. I tested negative for toxoplasmosis. Unfortunately, the 7 days of mino set me back physically for 4 months due to inflammatory response.
Posted 10/26/2019 2:49 PM (GMT 0)

JovaLyme said...
@Girlie,

I think there is something in Dr. J's approach of hitting Babesia first. Disulfiram is definitely hitting it.

Once I'm done with the Disulfiram, I am going to try Dr. H's 4 drug combination for Bartonella. I don't think Disulfiram really hits it that much to be honest. All the herxing and flares seem more like Borrelia and Babesia to me.

I am going to get some minocycline to try and hit the brain symptoms before I do that. Only a short course of it though.

Will you take a second antibiotic with the mino?
It’s not recommended to take a single antibiotic for these infections - the llmd’s pair them.
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