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Advice on treatment options?

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Posted 12/8/2024 10:56 PM (GMT -5)
Hi all,

I am an earlyish case with some lingering mild symptoms.
Recently it's mostly a new symptom of muscle twitching but my other symptoms are mostly gone.
I've been on doxy for almost 2 months and had 10 days tinidazole and 1 IV rocephin.
I've also been doing a modified buhners and recently started on Zhang.

I'm still waiting on my igenex immunoblot results but I tested positive for TBRF from igenex broad coverage assay.

Currently with a horowitz trained LLD and they are letting me pick which treatment I'd like to go with...

For possible antibiotic treatment options I've been given these two to pick from:
1. doxycycline (100mg BID) or minocycline (100mg BID) + rifampin + plaquenil
2. ceftin + rifampin + azythro (this combination would be pulsed to reduce side effects)

Regarding the second option - I believe the pulsing schedule would follow what's written in Horowitz's book which would be something like ceftin 500mg BID pulsed 3 times a week, rifampin 600mg BID pulsed 1-3 times a week, and azythro 250mg BID pulsed 4 times a week.

I was originally going to go ahead with the first option since since I'm currently already on doxy 100mg BID and tolerate it well but I've read some conflicting things about how rifampin reduces doxy levels?
I've also read that minocycline is better for neuro due to passing the BBB easier - should I ask to be switched to minocycline instead?

The second option I am also now considering since it includes ceftin which is supposedly good for any neuro symptoms but I'm a little unsure if the pulsing schedule is effective? Azythro has a long half life, but ceftin and rifampin both seem to have short half lifes.
Has anyone here done this type of horowitz style pulsing before - if so what were their experiences with it?

LLD said for either treatment it would at least be for 30 - 90 days.
Posted 12/9/2024 1:17 PM (GMT -5)
i wouldn't stress too much about which is best

both look to be completely reasonable protocols
and typically its not really possible to know in advance which will work best for any given individual

rifampicin is in both protocols - and tends to interact with most drugs as it influences liver metabolism - but it is a good persister cell drug ( better at killing bacteria that are not easily killed by growing cell drugs like doxy etc )

ref pulsing - many LLMD's use pulsing approaches - Dr J, Dr MR, Dr SP etc - this has been shown to be effective empirically in their clinical use

and i have made significant progress with a Pulsing approach suning many of the same antibiotics as listed above

i hope its of some help
Posted 12/9/2024 7:37 PM (GMT -5)
That looks like a good plan - you “caught” it soon.
Posted 12/9/2024 11:34 PM (GMT -5)

Garzie said...
i wouldn't stress too much about which is best

both look to be completely reasonable protocols
and typically its not really possible to know in advance which will work best for any given individual

rifampicin is in both protocols - and tends to interact with most drugs as it influences liver metabolism - but it is a good persister cell drug ( better at killing bacteria that are not easily killed by growing cell drugs like doxy etc )

ref pulsing - many LLMD's use pulsing approaches - Dr J, Dr MR, Dr SP etc - this has been shown to be effective empirically in their clinical use

and i have made significant progress with a Pulsing approach suning many of the same antibiotics as listed above

i hope its of some help

Thanks so much for the input Garzie - it's helped a lot to put some of my worries at ease.
Thanks for also mentioning what action rifampin has - I only knew it was another intracellular drug but didn't know it was used to target persisters.

I feel like after all the other doctors, I'm worried I'm going to make another 'mistake' that will prolong my treatment but it's like you said, it's not really known how a treatment will work out until you try it.
Posted 12/9/2024 11:43 PM (GMT -5)

Girlie said...
That looks like a good plan - you “caught” it soon.


Thanks Girlie, it is reassuring that at least either option seems ok on this board.

I saw some of your older posts and it seems like Dr J does kind of a similar pulsing schedule where different antibiotics are on different days of the week?
Posted 12/10/2024 2:53 AM (GMT -5)

tryingmybest said...

Girlie said...
That looks like a good plan - you “caught” it soon.


“Thanks Girlie, it is reassuring that at least either option seems ok on this board.”

I saw some of your older posts and it seems like Dr J does kind of a similar pulsing schedule where different antibiotics are on different days of the week?

/////////////
Yes he does
Posted 12/10/2024 6:54 AM (GMT -5)

tryingmybest said...
Currently with a horowitz trained LLD and they are letting me pick which treatment I'd like to go with.


I find it odd that they are letting you pick your treatment option. It doesn't seem like you should be stuck with researching this

One is pulsed and the other is not?

I have been exposed to 3 llmd's and I cant imagine any of them giving me that big of treatment choice. Especially the choice of pulsing or not.

Don't take this message as being harshly critical. Tone is always hard to convey in postings
Posted 12/10/2024 1:24 PM (GMT -5)

trkane said...

I find it odd that they are letting you pick your treatment option. It doesn't seem like you should be stuck with researching this

One is pulsed and the other is not?

I have been exposed to 3 llmd's and I cant imagine any of them giving me that big of treatment choice. Especially the choice of pulsing or not.

Don't take this message as being harshly critical. Tone is always hard to convey in postings

Hi Trkane,
I appreciate your input! I know what you mean by it seeming like it's a really big choice and having to research it seems unreasonable.

My LLD gave me several options for treatment and they want to do whatever I'm comfortable with.

The first option he brought up with me was to come off my doxy and just do herbal only since I'm working with Zhang and see how I feel at the end of that - I'm considering it but I feel like I want to give a "proper" course of combo antibiotics a try before going all herbal only.

He did let me know at the moment he doesn't have a strong preference for antibiotic route vs herbal route for my case. I'm assuming if he did have a strong preference he would let me know.

I messaged him to discuss so I'll see how he responds.
Posted 12/12/2024 7:02 AM (GMT -5)
It is great he is so open minded. For mine any suggestion or question about a possible new drug/therapy would never be considered.
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