First day of protocol - hitting hard!

Girlie…
How much were you able to recover from initial treatment.

BlondieStrong said...
Girlie…
How much were you able to recover from initial treatment.

I would say 90% +

When I first was diagnosed - I had something like 35 symptoms - from head to toe.

Now I have a few left - - —- - memory isn’t 100%
and my upper left side of my back still hurts sometimes.

I did see a LLND for over a year prior to Dr J and did lose some symptoms on his protocols. But he couldn’t legally prescribe antimalarials so Babesia wasn’t treated.

I don’t think it’s necessarily a bad thing if I do end up herxing.
I’m thinking that there could be some resurgence of the infections.
I checked my calendar and it looks like I had 6 weeks off.
Dr J said it’s fine to stretch the time off.

Lymie24 said...
I find it a little depressing that even after long term therapy that infectious load can build back up with cessation of therapy. Did they tell you how many people hit remission vs. how many have to be on maintenance? Do most stay on maintenance for life?

If I can make some good progress with them and become stable I would be tempted to try a more aggressive treatment to try to send the disease into remission.

All patients are on maintenance after completing the protocols. I don’t know for how long…I doubt for life.

The protocols are certainly aggressive enough.

“ When you only have like one set protocol like Dr. J with pulsing, it makes you wonder that if there was more flexibility and a variety of protocols utilized if there would be a better success rate.“

Dr J does have a good success rate - from what I’ve seen/heard. (Forum members plus people I know personally and what DrJ reports)

I have also seen/heard many patients give up before the treatment protocols are finished.

Continuing to treat and suffering through herxes and side effects of the abx for years is difficult.
Many give up.

Edit to add: while there is a template - the protocols do vary from person to person.
It depends on what coinfections you have - how you respond to treatment… etc

Girlie said...
“ When you only have like one set protocol like Dr. J with pulsing, it makes you wonder that if there was more flexibility and a variety of protocols utilized if there would be a better success rate.“

Dr J does have a good success rate - from what I’ve seen/heard. (Forum members plus people I know personally and what DrJ reports)

I have also seen/heard many patients give up before the treatment protocols are finished.

Continuing to treat and suffering through herxes and side effects of the abx for years is difficult.
Many give up.

Yes, that is an aspect. I'm sure many give up. Glad you're feeling better!

i used to have herx like reactions that could last 1-2 weeks -

i would take the fact that it only lasts a day or so now as a good sign

Girlie said...

Lymie24 said...
I find it a little depressing that even after long term therapy that infectious load can build back up with cessation of therapy. Did they tell you how many people hit remission vs. how many have to be on maintenance? Do most stay on maintenance for life?

If I can make some good progress with them and become stable I would be tempted to try a more aggressive treatment to try to send the disease into remission.

All patients are on maintenance after completing the protocols. I don’t know for how long…I doubt for life.

The protocols are certainly aggressive enough.

How long are Dr. J protocols from when you start until maintenance? They gave me a protocol to start which will last me 12 weeks. What happens if you still have symptoms after the entire protocol?

bro123 said...

Girlie said...

Lymie24 said...
I find it a little depressing that even after long term therapy that infectious load can build back up with cessation of therapy. Did they tell you how many people hit remission vs. how many have to be on maintenance? Do most stay on maintenance for life?

If I can make some good progress with them and become stable I would be tempted to try a more aggressive treatment to try to send the disease into remission.

All patients are on maintenance after completing the protocols. I don’t know for how long…I doubt for life.

The protocols are certainly aggressive enough.

How long are Dr. J protocols from when you start until maintenance? They gave me a protocol to start which will last me 12 weeks. What happens if you still have symptoms after the entire protocol?

There are patients at the clinic that have been on orals that took beyond a year to reach maintenance. There are lots of variables that keep people in treatment longer than others, for example some people have to treat babs way longer than others. It’s really impossible for Dr. J or anyone to tell you how long your protocols will specifically be even for babesia, they base it off your symptom progression, some people have a harder time with different coinfections

bro123 said...
Do most people hit 90%+ after a year on the protocols? I forgot to ask his success rate with his patients after 1 year on average

I watched an interview DrJ had with a reporter a few years ago.
I believe he said the success rate was 70% and it would be higher if patients didn’t give up and quit.
He acknowledged the difficulty for some patients to stick with it.

The problem with "success" rates is that there is not a clear definition of what success means in the context of chronic Lyme. Is it remission of all symptoms? Is it some sort of lab result? Is it a subjective improvement in symptoms?

I've learned not to put too much stock into a doctor's or clinic's proclaimed "success rates".

I have a relevant anecdote. Disulfiram improved my subjective symptom profile significantly. My quality of life seemed much better after a few months of therapy. After I tapered off DSF everything fell to crap again. Was Disulfiram a success or was it not?

I would argue that it was a temporally successful intervention, but it wasn't a successful treatment.

Lymie24 said...
The problem with "success" rates is that there is not a clear definition of what success means in the context of chronic Lyme. Is it remission of all symptoms? Is it some sort of lab result? Is it a subjective improvement in symptoms?

I've learned not to put too much stock into a doctor's or clinic's proclaimed "success rates".

I have a relevant anecdote. Disulfiram improved my subjective symptom profile significantly. My quality of life seemed much better after a few months of therapy. After I tapered off DSF everything fell to crap again. Was Disulfiram a success or was it not?

I would argue that it was a temporally successful intervention, but it wasn't a successful treatment.

I had the same reaction to disulfiram, I consider it basically a temporary band aid treatment, not really successful. but I’d classify successful treatments in the realm of many symptoms reducing/disappearing and reaching a sort of maintenance/remission state even after I’ve stopped the medication. I wouldn’t put tons of faith in doctors touted percentages but more hearing it from the actual patients of said doctor.