Strawberry
Senior Member
- Messages
- 2,146
- Location
- Seattle, WA USA
Just wanted to keep an update log. I’m still improving! The only thing that has changed in my meds is .5 mg ULTRA low dose naltrexone, and grapefruit seed oil (posted about earlier).
Everything else in my box of pills:
Alpha lipoid acid
dandelion
silymarin (milk thistle)
zyrtec
ketotifen
kidney (for MCAS)
neuroprotek
cumin
b12
And a slew of vitamins
I’ve taken low dose naltrexone many times in the past, but it made me overdo massively, and crashed hard. Never to experience benefits at that dose again. Experienced this several times. .5 mg has been a low and gentle improvement. It has been nearly a year that I have been on this ultra low dose.
Grapefruit seed oil I have posted about in the past, it has stopped the “sick” in its path. If I overdo monstrously, I will get a little sick, but nothing like I have been for nearly 30 years.
I do still get a “body” crash, but not a PEM sick crash. For instance, a couple weeks ago, I created a work from home office. I did too much, and I knew it. But my crash? I was winded half way up the stairs at work 48 hours later, and a teeny bit sick for a week or so. But absolutely nothing like where I have been for years.
Can I stand for long periods or walk a mile? Absolutely not. But I can now shower TWO TIMES per week. And if you haven’t followed my recent posts, I just drove a huge motorhome from Seattle to east of Sacramento and back. Did I crash with that? A little. I was still able to have a cook fest with my daughter to get food ready for my son in laws 40th birthday party. And then mostly unpack the motorhome when I got back.
WORTH IT.
Fyi I have in the last couple of weeks gone up to .75 mg of naltrexone, it still doesn’t seem to give me any energy rush, but if I keep improving I’ll stay on this dose for up to a year.
I do think ultra low dose naltrexone is worth a shot, as well as grapefruit seed oil. Don’t expect to feel anything soon. But in a year? Yes. I am.
And for the record, I have had ME/CFS for 28 years, low and slow downward spiral. Neck issues, hyper mobile, and autoimmune issues. We haven’t (that I’m aware) figured out classifications, but I know many that fall into my category.
Everything else in my box of pills:
Alpha lipoid acid
dandelion
silymarin (milk thistle)
zyrtec
ketotifen
kidney (for MCAS)
neuroprotek
cumin
b12
And a slew of vitamins
I’ve taken low dose naltrexone many times in the past, but it made me overdo massively, and crashed hard. Never to experience benefits at that dose again. Experienced this several times. .5 mg has been a low and gentle improvement. It has been nearly a year that I have been on this ultra low dose.
Grapefruit seed oil I have posted about in the past, it has stopped the “sick” in its path. If I overdo monstrously, I will get a little sick, but nothing like I have been for nearly 30 years.
I do still get a “body” crash, but not a PEM sick crash. For instance, a couple weeks ago, I created a work from home office. I did too much, and I knew it. But my crash? I was winded half way up the stairs at work 48 hours later, and a teeny bit sick for a week or so. But absolutely nothing like where I have been for years.
Can I stand for long periods or walk a mile? Absolutely not. But I can now shower TWO TIMES per week. And if you haven’t followed my recent posts, I just drove a huge motorhome from Seattle to east of Sacramento and back. Did I crash with that? A little. I was still able to have a cook fest with my daughter to get food ready for my son in laws 40th birthday party. And then mostly unpack the motorhome when I got back.
WORTH IT.
Fyi I have in the last couple of weeks gone up to .75 mg of naltrexone, it still doesn’t seem to give me any energy rush, but if I keep improving I’ll stay on this dose for up to a year.
I do think ultra low dose naltrexone is worth a shot, as well as grapefruit seed oil. Don’t expect to feel anything soon. But in a year? Yes. I am.
And for the record, I have had ME/CFS for 28 years, low and slow downward spiral. Neck issues, hyper mobile, and autoimmune issues. We haven’t (that I’m aware) figured out classifications, but I know many that fall into my category.
