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Need advice on where to go with treatment in the future. Feeling lost. Mold, lyme and co, + HPV vac.

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Posted 1/8/2019 7:20 AM (GMT 0)

Girlie said...
“We are doing a 2 week on 2 off protocol with dapsone, daraprim, lactoferrin, xylitol, clindamycin, minocin, augmentin, flagyl, diflucan, enula, cryptolepsis and a 1 day parasite challenge with ivermectin.”

That’s almost identical to my Persister protocol. But mine incorporates Rifabutin for Bart. And instead of augmentin I have Ceftin.

You only take Dap and Daraprim for one week - right?

My week 1 is different than my week 2

I wasn’t given Ivermectin - instead I got Alinia.
I wonder if there’s a reason for doing one over the other.

I have loved my appts with Dr J. I feel I am in good hands with him.

I'm not sure... I assumed she was doing alinia. IDK why they choose one over the other? I think alinia is more broad spectrum, hits babs, and viruses as well. Not sure...

My week 1 is like this:

MWF: Augmentin, minocin, dapsone, daraprim, mepron, enula, crypto.

Th Sat: Flagyl diflucan

Im glad you feel in good hands! I do too. And you have made decent improvements too right? I can't say enough good things about KF. She is incredibly sharp and a fast talker. Her brain puts together complex and intelligent dialog just as fast as her lips will flap lol. Mine sure doesn't. I have to slow down and think about things before speaking or I have a loss for words every now and again. Maybe it's lyme or maybe it's just the way it is. I feel maybe a tad slower (like 3%) than usual, but a lot of the time i just contribute that to lack of sleep because sometimes these infections prevent me from sleeping well.

I can't wait to see what happens during this first cycle on the protocol... I like the pulsing because it helps you recognize patterns. When you are on meds all the time you can't tell what is a herx and what isn't... or it is much harder.
Posted 1/8/2019 7:26 AM (GMT 0)

sebreg said...
Very interesting about the retroviruses, I didn't know if that was another one of Dr K's tangents or if he was on to something. Cool that Dr J thinks there is potential there, especially for ALS patients.

That sounds like a plan in regards to upcoming treatment. I mean, intense, but it makes sense to get after the babesia and see where it takes you, especially if you think it is still in the mix. I have a healthy respect for the magnitude of what babesia can do, I feel like it's been the engine driving my illness (took me a while to figure out). It's always fascinating to me that each doctor has their own theories, Dr J thinks babesia is the major driver behind these illnesses, while Dr SP thinks it is often bartonella. Dr H seems to be more in the middle. I hesitate to pin it on any one thing, I think what dominates depends on the person, their susceptibilities, genetics, and sometimes things beyond the infections are the dominant player.

Ivermectin challenge is interesting as well. That was a drug that made me herx like crazy, strongest herx I ever had was to ivermectin, coartem, first time I took cryptolepis early on in my babesia treatment, and malarone. I think ivermectin was hitting my babesia (I get the same flares on antiprotozoals like coartem, malarone, cryptolepis, etc).

Haha. That is very similar to what Jemsek said about Dr K. He said he likes to jump from one thing to the next very quickly. Yes, it is so strange! Heck maybe if you knock down bart and lyme enough babesia will go back into hiding? So maybe it works sometimes for Dr SP, but I seem to hear of more and more people who don't recover treating lyme and bart, but start making good progress after treating babs. I have taken ivermectin with Dr. H's PA in San Fran, but it was dosed different. I think I started at 3mg and went up by 3mg every week. Something like that. I think I only stayed on it 4 or 5 weeks until I shifted to a new protocol. I do remember an upset stomach (parasites?!?), but not much else. We will see what happens this time around. For what it's worth, alinia and flagyl gave me AWFUL upset stomach and nausea. Maybe it wasn't a side effect maybe they were killing parasites? Because I started alinia again months later after the initial rounds and it no longer gave me an upset stomach...
Posted 1/8/2019 5:33 PM (GMT 0)
Sorry if I'm hijacking this thread, but are the prescription meds generally covered by insurance when you travel from out of state to seek treatment at the Jemsek Clinic.
Posted 1/8/2019 5:41 PM (GMT 0)

DaveSS said...
Sorry if I'm hijacking this thread, but are the prescription meds generally covered by insurance when you travel from out of state to seek treatment at the Jemsek Clinic.

Welcome, DaveSS.

I'm Canadian...so i'm not sure about that. I'm thinking they are covered...as there are several forum members who go to Dr. J. that live in other States...and Ive not heard about them having to pay out of pocket for all their presc. meds.

It would be best for you to start a new thread: "LLMD out of State - are prescription meds covered by insurance?"

If you'd like more information on the J clinic, you can email me and I'll fill you in. ie cost, appointment frequency, etc...
Posted 1/8/2019 5:47 PM (GMT 0)

Sheeks175 said...

Girlie said...
“We are doing a 2 week on 2 off protocol with dapsone, daraprim, lactoferrin, xylitol, clindamycin, minocin, augmentin, flagyl, diflucan, enula, cryptolepsis and a 1 day parasite challenge with ivermectin.”

That’s almost identical to my Persister protocol. But mine incorporates Rifabutin for Bart. And instead of augmentin I have Ceftin.

You only take Dap and Daraprim for one week - right?

My week 1 is different than my week 2

I wasn’t given Ivermectin - instead I got Alinia.
I wonder if there’s a reason for doing one over the other.

I have loved my appts with Dr J. I feel I am in good hands with him.

I'm not sure... I assumed she was doing alinia. IDK why they choose one over the other? I think alinia is more broad spectrum, hits babs, and viruses as well. Not sure...

My week 1 is like this:

MWF: Augmentin, minocin, dapsone, daraprim, mepron, enula, crypto.

Th Sat: Flagyl diflucan

Im glad you feel in good hands! I do too. And you have made decent improvements too right? I can't say enough good things about KF. She is incredibly sharp and a fast talker. Her brain puts together complex and intelligent dialog just as fast as her lips will flap lol. Mine sure doesn't. I have to slow down and think about things before speaking or I have a loss for words every now and again. Maybe it's lyme or maybe it's just the way it is. I feel maybe a tad slower (like 3%) than usual, but a lot of the time i just contribute that to lack of sleep because sometimes these infections prevent me from sleeping well.

I can't wait to see what happens during this first cycle on the protocol... I like the pulsing because it helps you recognize patterns. When you are on meds all the time you can't tell what is a herx and what isn't... or it is much harder.

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

I have made some improvements, yes. I had plateaued for a long time prior to switching to the J Clinic.
I'm waiting to see what my baseline is now...as I finished meds last Friday .... but still not back to feeling better yet.

I have heard a lot of good things about KF. I was going to try and get her as my NP, but I ended up with Dr. J himself...so I think i'm good with that. LOL.
(altho I guess I should be prepared for them switching me to someone else)

Oh - I just noticed - you're only taking the D and D M/W/F? I took it 5 days straight with the other abx (Rifabutin and Ceftin) only M/W/F.
Posted 1/9/2019 2:49 AM (GMT 0)
She's great, but I think you are going to be just fine with Dr. J ;)

Yes only 3 days a week the first week. Are you taking the max dose xylitol / lactoferrin? 2 tsp and 500mg?
Posted 1/9/2019 3:11 AM (GMT 0)

Sheeks175 said...
She's great, but I think you are going to be just fine with Dr. J ;)

Yes only 3 days a week the first week. Are you taking the max dose xylitol / lactoferrin? 2 tsp and 500mg?

Yes, I’m at full dose - but started lower. I’ve been on the lacto and xylitol for about 10 months now.
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