Short summary of meds i tried by now

[Badpack]

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.

 

[wigglethemouse]

Phenytoin - best one yet, would be interested if other ppl ever tried it. Could be a big winner tbh.

what made you try Phenytoin? How do you think it's helping?

 

[Badpack]

Phenytoin is like benzodiazepine/lorazepam but without the extreme body dependancy after a while where you need higher doses pretty fast. Thats why tried similar things like benzodiazepine. It worked pretty good, but you need to be careful because it has a small therapeutic window.

 

[YippeeKi YOW !!]

While I'm a strong believer in the obvious, i.e. that all of us have to seek our own way in dealing with this crappy little carbuncle of an illness, I also believe that being fully informed is vital, given the potential for additional damage from possibly dangerous meds or protocols.

I'm wondering if you're using phenytoin (Dilantin) and lorazepam under a Drs supervision.

For one, taking both would be contraindicated, given that Ativan can dangerously potentiate the phenytoin, and the side effects of phenytoin are, to say the least alarming. Rashes, often serious; unusual hair growth on trunk, legs, and arms, often irreversible; potential serious liver damage; swelling of lymph nodes, sometimes painful; rise in serum glucose, requiring careful medical oversight during treatment; a drop in platelet or white blood cell counts, increasing the risk of bleeding or infection, respectively; Phenytoin also can cause anemia, and interferes with Vit D metabolism, causing weakening of the bones; and for the cherry on the sundae, it's pretty well known, along with other anti-epileptic medications, for an increased risk of suicidal ideation and behaviour.

Add to that the usual suspects of these medications, like dizziness, drowsiness, difficulty focusing eyes, unsteady gait, fatigue, abnormal involuntary movements, nausea, vomiting, constipation, abdominal pain, loss of appetite, and you've got a real party in the making.

And Ativan/lorazepam is HIGHLY addictive, has a short half life, meaning that you'll go into tolerance withdrawal more quickly than with something like Valium whose half-life is prodigiously long, and is probably one of the closest things to hell to get off of, with or without tapering it. Well, without tapering it is probably easier because that bear can kill 'ya., so, you know, problem solved.

Both of these are crutches. They're not healing your illness, or reversing it, or improving it in any meaningful way, they just pretty much keep you from feeling as crappy as you do without them. Until you have to go without them, and then ....

But enough fun talk.

Please be careful with these meds, either separately or in combination. Especially in combination. Phenytoin is a very old drug, I think it came out sometime in the 30's, and its side-effect profile is well documented. It's been largely elbowed out by its even meaner cousin, Klonopin, which I'd urge you to avoid like the plague.

Ativan is one of the most potent of all the benzos, and is prescribed for anxiety disorders, depression, and panic attacks. Because of its strength, it's very addictive, and it carries an extremely high risk of dependence, like, almost guaranteed. I know that you think that 0.5 mg is a miniscule dose, but it's the equivalent of 5 mgs of Valium, not exactly huge, but not tiny either.

Other than immediate relief from a illness that all of us can understand the urge to escape, I don't see any obvious benefit here, and please, again, please be really careful with these ....

Well, having spread as much fun and frolic as anyone can possibly need on a late Monday night or very early Tues morning, I'll find my own way out ....

 

[Badpack]

Thanks for your concerns. Im a doctor, so i trust myself in handling them well enough i hope. I never took both at the same time. 0,5mg is a pretty low dose, i never uped it and i use it only during heavy crashes to ease the pain somewhat.

But yes, dont take things without the consultation of a doctor. This was no medical advise to anyone here.

 

[YippeeKi YOW !!]

This was no medical advise to anyone here.

I just wanted to make sure that you, and any future readers, fully understood what some of the ramifications of those meds could be. I'm deeply relieved that you absolutely know what you're doing ....

What kind of Dr are you, if that's not getting too personal .....

 

[Badpack]

I was a hematologist/oncologist 6 years ago. But Cfs ruins life. I think we all know that.

 

[Pearshaped]

Badpack I really appreciate when others list what has helped them and what did not.

Its inspiring and can help us to look into things we didn't try yet.Or we hadn't heard of it yet.Thank you.

Im sorry that not many things have worked so far but I was also helped by a sleep med,without it,I probably still wouldn't be able to read or browse the internet.Did they give you an injection with IgG after plasma exchange?

 

[YippeeKi YOW !!]

I was a hematologist/oncologist 6 years ago. But Cfs ruins life. I think we all know that.

Oh crepe, @Badpack !!! That's brutal .... to go from trying to save lives under some of the hardest circumstances on earth to being pounded by the other hardest circumstances .... another of life's whimsical little jokes....

I'm so sorry ..... keep doing whatever helps you crawl thru the day, and keep knowing, too, that with your perfect background, your shot at getting better is way ahead of ours ...we'll be looking to you for hope ...

Strength and courage, and onward and upward .... or sideways .... or, you know, whatever gets you back to where you should be, ought to be !!!

 

[Badpack]

@YippeeKi YOW !! Thanks for your nice words, but tbh, i did a lot of harm to myself in the search for a cure. If everything medicine has to offer is laying to your feet, its not always the best to take it with both hands. The prednisolone trails left a big health mark. So everyone, be very careful in trying things and always remember the possible consequences.

Besides that, i loved my job and still dreaming going back it maybe some day.

 

[Badpack]

@Pearshaped its not common to do this anymore (igG after pheresis). Normally only the older, less informed doctors still keeping up with this practice.

I also tried different sleep medications like melatonin. Its ok, but not ground breaking.

 

[Pearshaped]

so you didn't receive it?
why is it dangerous? my doc said it was not clear if the plasma exchange have helped the patients who did respond or if it was the IgG injection..

Yeah melatonin has worked for some I guess.it gives me bad nausea.

Did Beta blockers not help you at all?(I guess you have POTS?)

 

[Badpack]

@Pearshaped beta blocker helped a bit, for a short time, but nothing of worth to keep taking it just because. No i didnt receive it. Its not dangerous to give igG after a plasmapheresis, its just not necessary. Especially if you do it for autoimmune reasons. Because you want the igG lvls below 1. In the earlier days doctors got scared of it and rapidly filled up again, thats now obsolete but some still do it.
Also you get the exact same problem you are describing. You dont know if the plasma exchange worked or the igG.

 

[Pearshaped]

May I ask you for which symptoms Phenytoin have helped you?

 

[Badpack]

@Pearshaped my brain fog disappeared completely. Also my body color went from the Cfs greyish back to a normal light red. Means, all my blood vessels opened up again. The skin perfusion went up. But my heart rate exploded to 180-200 just standing up. So it wasnt all just fine. But definitely something i hope some researcher can pick up on. Was one of the most impressive ones.

 

[YippeeKi YOW !!]

Thanks for your nice words, but tbh, i did a lot of harm to myself in the search for a cure. If everything medicine has to offer is laying to your feet, its not always the best to take it with both hands.

It must be hard to have a giant Aladdin's cave treasure chest spread out before you, not to mention the years and years of education, training, and experience ..... damn ..... long meanderig sentence .... where the hell was I .... oh, yeah .... it must be hard with all that at your disposal not to take it with both hands, backed by the certainty that you can definitely find the answer in there somewhere.

This illness is a baffling little sniggering Trickster of a riddle, with a slightly different answer for each of us. Sometimes a hugely different answer.

Your odds are good !!! Don't be disheartened by past missteps or failures .... it's all grist for the mill, and each mistake provides a small thread of new understanding which can eventually weave itself into something much larger, fuller, and better.

Besides that, i loved my job and still dreaming going back it maybe some day.

I'll hold a good thought. The world needs more Drs with experience on both sides of the line, and the heart and soul to take advantage of that for the benefit of both themselves and their future patients.

Normally only the older, less informed doctors still keeping up with this practice.

See? You're still using your skills, just in a somewhat unexpected setting and manner.

Your knowledge and input can be invaluable here. You're still using them, developing them, and deepening them, even if temporarily separated from your primary discipline.

I also tried different sleep medications like melatonin. Its ok, but not ground breaking.

Melatonin alone isn't quite useless for me, but it comes real close. At least as a stand-alone.

I have to take a bedtime sleep-stack of 0.5 mcg of mel about 45 or so minutes before bedtime, along with 50 mgs of mag glycinate, then another 0.5 of mel, 100 mgs of mag gly, 500 mgs of Vit C, 85 mgs of calcium, and, on the nights where I've been sleep deprived for too long and desperately need a good night's snooze, 1/2 a Unisom (12.5 mgs of doxylamine succinate as opposed to Benadryl and diphenhydramine, which is absolute shite for me and has totally paradoxical effects), and that combo is almost magical in terms of its efficacy.

Highly recommended if sleep is a problem for you (though with Ativan available as an emergency default, I wouldn't think so), with the caveat that nothing works the same for everybody, especially with this creepy little maggot of an illness.

But then, as an oncologist, you already know that. It's surprizing how many Drs don't ....

I'm glad to know you @Badpack. Don't lose faith. This little bugger has defeated multiple tries by God knows how many patients, before finally yielding up an answer that works, and gradually puts you back on your feet.

Or at least gets you off your couch ....

 

[jaybee00]

Did you take Phenytoin orally or by IV?

 

[Badpack]

@jaybee00 orally, but please dont think about taking it without a doctors supervision. Its an old medication which isnt used anymore for a reason. I also moved on from it to better opportunities like SS31. Which seems closer to the cause of the problem than plugging holes with Benzos.

 

[YippeeKi YOW !!]

I also moved on from it to better opportunities like SS31.

I seem to recall that there's a couple of threads on SS31, but I won't go into the odds of that memory being accurate .... still, you might want to poke around the 'SEARCH' option at the top right-hand side of every page and see what comes up ....

 

[Wishful]

LDN 2,5mg 2 months - nothing

LDN is tricky because of its narrow effective dosage band. For me, 2.25 mg (sublingually, which is ~30% more effective) had full effect, but 2.0 mg had no effect. Somewhere over 5 mg also stopped working. Other people here reported benefits from really small dosages. Did you try higher and lower dosages of LDN? For me it just blocked neuropathic pain, but it was very effective at that.

I've had better luck with non-pharmaceuticals: supplements and spices/herbs, and the most effective ones were the ones that didn't have any theoretical basis for helping with ME; they were just accidental discoveries. I strongly recommend against limiting one's experimentation to pharmaceuticals.

Im a doctor, so i trust myself in handling them well enough i hope.

I seem to recall reading in several places that doctors make the worst patients, and have terrible judgement about self-prescribing. That might have been in fictional works though.