Short summary of meds i tried by now

After some ppl asked me about some meds i tried, i thought i try to make a short summary. Maybe its helpful for someone or it sparks some conversation about them.

Things i tried and didn’t work:

LDN 2,5mg 2 months - nothing
Plasma exchange 7 times in 10 days - nothing
rituximab 500mg day 1/day14 loading dose, refresh after 3 months - nothing
high dose prednisolone for 4 months - a truck load of side effect, one of the worst decisions i made, did nothing good only bad
MTX - made me much worse
rapamune 4mg loading dose followed by 2mg for about a month - nothing
betablockers (selective and unselective), astonin, mestinon and so on - nothing
chelate therapy for heavy metals - nothing

things that worked for me:

benzodiazepine/lorazepam low dose, 0,5mg during crash, helps a lot to ease them
Phenytoin - best one yet, would be interested if other ppl ever tried it. Could be a big winner tbh.

Things that worked for a friend:

Gabapentin 300mg 3 times a day

Pretty sure i missed a lot of things i tried during the 6 years i’m sick now, will add them if they come to my mind.

 

I find this really interesting. Isn’t Lorazepam what has a very good effect on Whitney (as far as I know nothing else has that effect on him)? Why could this be? It is used for things like anxiety, catatonia etc.

It looks like phenytoin is also used when other similar medications don’t work.

Have you by any chance sent any emails to the OMF with your experiences? I think they may be interested as they’re looking into why Whitney responds so well: they’re doing blood tests. Although I think maybe brain scans/some way of measuring what’s going on in the brain could be helpful too.

Many of us have tried pregablin and gabapentin but not all get on well with that, and that’s supposed to increase GABA in the brain as well. But I do find it interesting that some report that lorazepam helps them in this way. I remember reading somewhere of severe people who could not hold their head up but after taking this, could sit upright for hours - or took it just before an ambulance came as they knew they would need to be upright, or take it to ward off noise and light sensitivity. Could it be that some of our issues then are related to a severe chemical imbalance in the brain, caused/triggered by a virus etc - and this then affects the nervous system in this way? How would we figure out if this was happening or not?

Edited to add a sentence.

 

I tried contacting Ron 2 times before but its like screaming into a forest. He seems super busy and gets to much mails everyday i guess. Yeah Phenytoin is pretty similar to benzodiazepine. With less body dependancy but smaller therapeutic window. I also tried Gabapentin and it did nothing for me, but my friend somehow got a pretty remarkable boost out of it.
I could only theorize, but i think the body doesn't create enough ATP in the cell or it doesn't cant hold in so ATP gets in the bloodstream. Either way, both would be big stress inducers. So the brain gets into overload and is activating the sympathetic nerve system even more, which forces the body even more in a lack of energy, like a vicious cycle, and thats why benzodiazepine helps reducing this a bit. Pretty sure its not treating the cause, but at least the following circulus vitiosus.

 

Have you by any chance tried Valcyte, or other antivirals? It seems like a common drug that many patients try.

 

@sebaaa A friend of me tried it and got much worse pretty rapidly for the time he took it. So i restrained from it and dont have intentions to try it because the patient reports also arent really overwhelmingly positiv. Also i dont see a medical reason to do so. All things i tried, i followed some medical hypothesis. And taking Valcyte just for an unknown virus isnt very plausible to me.

 

The best treatment I've tried was magnesium/taurine injections on and off for a few years.

 

nmda antagonists,...

 

Wondering if we took lorazepam very occasionally in order to do something essential that would usually result in 2 days PEM if with lorazepam we'd have significantly less PEM? I'm asking as I haven't read about Whitney having a bad reaction after his sessions with lorazepam?

 

@Helene thats kinda what i do. I try to keep it as seldom and low dosed as i can to not get a body dependancy. For now the 0,5mg on and off worked great for me without the need to up the dose to get the same reaction.

 

@Badpack

What symptoms did phenytoin help with? Did you stop taking it?

Thanks