what medications should i try?

[dylemmaz]

hi everyone. i have an upcoming appointment with my cfs specialist to talk about trialing new meds/treatments. i wanted to get some input on what you think might be a good idea for me to request? i’ve found the appointments to be most productive when i go in with a list of things i would like to try and then my doctor tells me if they’d be a good idea in my case or not.

so far this is what i’ve tried: low dose abilify (benefit) low dose naltrexone (benefit), mestinon (benefit) fludrocortisone (didn’t help), celebrex (benefit but not tolerable), beta blockers (helps my pots - settled on metoprolol), valcyte (didn’t help), b12 and glutathione injections (didn’t help).

i’ve been sick with cfs for 4 years now. i had gastroenteritis onset. i’m currently moderate/severe. i suffer from PEM, brain fog, debilitating fatigue, muscle weakness, orthostatic intolerance. not sure if i have mcas issues. may request trialing ketotifen to see if that helps.

do you have any ideas on what medications i should request? what seems promising that i haven’t yet tried?

thank you so much.

 

[Martin aka paused||M.E.]

You say you benefit from Abilify. How long do you take it.
Read of someone combining it with Nimodipine.

 

[dylemmaz]

You say you benefit from Abilify. How long do you take it.
Read of someone combining it with Nimodipine.

i’ve been on abilify for 2 months now. haven’t noticed as much of a benefit as you did. just slightly improved physical energy and my mental energy is better. i did .25mg for a month and a half and now i’m starting to titrate up to .5mg every once in a while. there was also a period where i took it every other day for a while because my cfs specialist said this may help avoid poop out.

ill ask about nimodipine. thanks martin

 

[Martin aka paused||M.E.]

i’ve been on abilify for 2 months now. haven’t noticed as much of a benefit as you did. just slightly improved physical energy and my mental energy is better. i did .25mg for a month and a half and now i’m starting to titrate up to .5mg every once in a while. there was also a period where i took it every other day for a while because my cfs specialist said this may help avoid poop out.

ill ask about nimodipine. thanks martin

Your doctor should study the half life of the drug and reevaluate his advice … *head meets table*

 

[dylemmaz]

Your doctor should study the half life of the drug and reevaluate his advice … *head meets table*

honestly that’s fair. to be honest i may be thinking of the wrong drug and she actually said that about the low dose naltrexone. with abilify i think she just said “less is more, take every other day.” which i also hadn’t heard before but i took her advice nonetheless

 

[Martin aka paused||M.E.]

honestly that’s fair. to be honest i may be thinking of the wrong drug and she actually said that about the low dose naltrexone. with abilify i think she just said “less is more, take every other day.” which i also hadn’t heard before but i took her advice nonetheless

And it makes no sense at all

 

[dylemmaz]

And it makes no sense at all

i’ve asked a lot of people on reddit why she suggested it and no one really gave me an answer that made sense. i will ask her thursday. she had previously only said this through email so i don’t hold that to her as her emails are always short (she sees so many patients a day so doesn’t have much time to respond in depth)

 

[bensmith]

Another dr levine patient?

 

[dylemmaz]

Another dr levine patient?

yep! that’s me

i really enjoy dr levine i think she’s a big help. has been extremely helpful for me.

any treatments she has tried you on that have helped?

 

[bensmith]

Ivermectin did yeah. Not sure after crash.

 

[dylemmaz]

Ivermectin did yeah. Not sure after crash.

she prescribed me ivermectin. i haven’t taken it though. i didn’t have covid so i wasn’t sure if it was worth it for me. i didn’t know of many other cfs patients taking it so i didn’t want to be the only one. maybe i’ll give it a go

 

[vision blue]

HOw about magnesium by IV? fecal transplant? GABA? Vitamin C by IV? I'm a fan of the OAT test and amino acid urine test and comprehensive stool analysis (the last two, i've liked doctors data and for the OAT that's great plains; i know others have used genova but I never have) , all of which an alternative doc can easily order (though often not covered by insurance);

 

[dylemmaz]

HOw about magnesium by IV? fecal transplant? GABA? Vitamin C by IV? I'm a fan of the OAT test and amino acid urine test and comprehensive stool analysis (the last two, i've liked doctors data and for the OAT that's great plains; i know others have used genova but I never have) , all of which an alternative doc can easily order (though often not covered by insurance);

can’t get a fecal transplant in my country. im not brave enough to do it on my own either. i would like to try it, although my gut problems are cured/in remission so i’m not sure it would help me. comprehenisve stool testing and organic acids testing helped me a lot when i was undiagnosed. i was able to resolve a lot of my symptoms by using them. i think i’ve done a total of 4 stool tests and 3 organic acid tests now. worth the cost for the quality of life gains. debilitating fatigue and pem remained though.

not familiar with GABA? magnesium iv and vitamin c would be nice. my doctor asked about iv vitamins in the past. thanks for the ideas!!