Hi all, some news here!
Hopefully this will be a good read for anyone who likes positive news!
Spring of 2020 was really hard for me and I was in my worst condition ever - bedbound for 23,5 hours/day, very, very inflammed and my PEMs was 5 days long after any activity...
I did lot of bloodwork thought summer in IMD Berlin and this shows very, very positive LTT test for Lyme. Again...
Just so you know - I'm allergic to "Lyme" diagnosis after this 7 years of my CFS... Also thanks KDM haha!
It's so hard to know if the activity is correct... there is a possibility of cross reaction with EBV and more... read this:
"
What can cause a false positive Lyme test result? The two most common infections that can cause your Lyme titers to be positive are Epstein-Barr Virus (the virus that causes mononucleosis) and Toxoplasma gondii (a parasitic infection). Less commonly, individuals with Syphilis and Parvovirus B19 (also known as Fifth’s Disease) can have positive Lyme disease titers."
On the other hand, I was happy with other results - many of them are better!
@Learner1 helped me a lot to decide what to do next. Thanks! I also added some my own ideas...
- now Im doing much more for better gut
- now 3 months on DNRS
- Ketotifen and Flonidan for 4 months
- Disulfiram for Lyme for 3 months, now on 300 mg/day
- more L-Carnitine
- this month I will start Oxymatrine for my very, very low IFN-g ...thanks
@dreamydays for tip for buy!
Now Im better, today I danced for some minutes and it was amazing!! last month I rode my bike for some minutes. My PEMs are really shorter and better - only for 0,5 or 1 day! My energy levels are little bit better and I think, now Im 2 hours out of bed. My sleeping is normal! I sleep for 9 hours every day...amazing!
Fact is, I dont know what work for me best from this protocol...really hard to say. Its a small progress...but its amazing. I don't know if disulfiram works, but my liver works wonderfully, so I want to stay on it for the whole recommended time. I think DNRS is what helped me with sleep.
My biggest problem is still fatigue, inability to stand or sit and burning/pain in the muscles after activity.
But I want to move on! Faster, better...taste active life next year again...motivation is big
Therefore I have a question - would any of the EU members help me a little with online pharmacies?
I want to try thought this winter:
- Pyridostigmine
- Celebrex
- LDN
- Copaxone
Here in Czech Republic is very hard to buy on online pharmacies due to customs :-/ Please, PM, if someone can help to send some of this ;-)
Regards, Martin