The saga of the never ending illness

i have been sick for 8 years also Lyme - but over 60% recovered now and making steps forward slowly but surely

i wish i had done some things sooner - but we can never know what the counter-factual would have been - ie what would have happened if we didn't do the things we did - ie took a different path

sometimes i think that some of the things i did in earlier years or stages helped get me to a place where i could respond to treatment better later

i think we can all get better - its just a puzzle to find the right path

i also think Jemsek is one of the best out there - and after many trials, approaches and experiments i am following his general approach now - in order to get a step forward.
Although i am doing it on my own as i really cannot afford to travel to the USA for consultation.

one thing i would pass on is that progress is often slow when one has been sick for as long as we have - and due to the inevitable ups and downs of the illness - and of the treatment itself - these small incremental changes over time can be very hard to track subjectively.
even more so when pulsing as inevitable ups and downs are baked into that regimen

if i didn't have a robust, objective way to track even small amounts of progress and you asked me if the last 6 month of pulsed antibiotics were working - my subjective response would probably be - "i'm not too sure"
but when i look at the data - i can see i can do more each day - and the tasks i am doing are more meaningful and less just surviving type stuff - my daily walks are faster - i am doing more exercise - my sleep is better.
to have this type of a tool is a great source of motivation and comfort - as it gives concrete evidence of real objective progress - which is very empowering - vs constant doubt of just going by subjective assessment

i mention this as i think many people do some months of treatment - do not feel they are moving forward - or not at the rate they had hoped - and then stop or change direction
whereas - especially if one has been ill for many years - very slow gradual underlying progress - which can be obscured by daily or weekly ups and downs is probably much more the norm.

DSF helping is a good indicator you are on the right track with Lyme - as its highly specific - but it also sounds to me like bartonella might be a big part of the issue for you - and this is known to often be very stubborn to get to respond - and is not addressed much till the later stages of James's protocols.

hang in there - and keep up the good work

Lymie24 said...
For context, it has been over EIGHT years since I found a tick on the back of my knee that had probably been there for 24-48 hours. I became sick in coming months. Again, EIGHT YEARS AGO. lol.

I've been through lots of treatment with abx, herbs, and one run with Disulfiram. DSF had the best results. Moderate to hardly any results with abx therapy depending on the therapy over the years. Anyway, I was treating with Jemsek for about a year when I was tired of abx and lack of progress so I decided to stop in May of this year. I went to my previous doctor and he wanted to try to treat me with the antiviral valganciclovir. After reading the possible side effects I declined. He has an alternate herbal protocol which did nothing for me. I have been trying herbs for several months. They have done nothing. I have been in bad shape. Neuro inflammation out the wazoo. Joint pain, stomach messed up, painful lymph nodes, no energy, and on and on. Simply put, I feel like death. I've just been focusing on surviving. Can get out of bed but can't do much. Don't leave the house much. Minimal functionality.

Due to this, in desperation yesterday I took the first day's antibiotic protocol that Jemsek clinic had designed for me back in May. Today, I woke up and felt noticeably better. Not perfect by any means and now that it's getting into the afternoon I already feel symptoms creeping back in, but, this is insane to me! One day's worth of abx has improved my symptoms. What is mind boggling to me is I have done SO MANY abx over the last 7 years. The fact that taking one day of abx has shown to be helpful after all this time is both hopeful but also sobering. It seems I am never going to shake this illness.

My symptoms started about 10 years ago.. if I’m remembering correctly.

Symptoms started 2013. Regular tested me for everything… nothing showed up.
2014 tested positive for Lyme.
Was treated by a LLND 2014 to 2016. After that I was about 80% better.
Then I saw 2 or 3 more LLND’s. No progress.
2018 - went to DrJ in DC.
I am now in remission.

Don’t give up!

Lymie24 said...
. That said, Jemsek was about to put me on a more Bart specific regimen when I stopped. Therefore, I might continue with them and see what happens. It sucks traveling to DC in my current condition. That's another emotional factor. Travel + cost with no results wipes out all motivation to continue.
.

i was going to say something along the lines of bart can be such a hard infection to get to turn the corner that progress can be very hard to measure - even after a year of treatment - i believe its the reason for my own slow response to antimicrobials

in my case its taken 2 years of max dose bart and lyme herbs plus diet and lifestyle interventions - and many supplements - then adding more bart specific methylene blue and bromelain - then adding 7 months of pulses of antibiotics on top of that - progress is real - just slow - especially initially - its speeding up now that i have it targeted from multiple angles.

Jemsek's targeting it more directly sounds like the way to go to me - keep up the good work

Hang in there Lymie24