Still improving

Strawberry

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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.
 
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Really awesome. Congrats. if i search for grapefruit seed oil will i find your thread? Does it have to be taken as a capsule?
Wish lists couuld transfer but we are all so different its unfair .

I’ll buy a motor home ifylu cone drive it for ne.
 

CSMLSM

Senior Member
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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.
Super happy for you that even though you get after affects you are able to do things that make your life worthwhile. Lifting your spirit is sometimes more important than being more stable for sure. Otherwise whats the point!

I am in recovery using something that works very much like LDN. From my research and experience I would say better as I am almost normal now.

If you ever want to know more just message me with questions and I will respond asap.

Take care.
 

Strawberry

Senior Member
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Location
Seattle, WA USA
Really awesome. Congrats. if i search for grapefruit seed oil will i find your thread? Does it have to be taken as a capsule?
Wish lists couuld transfer but we are all so different its unfair .

I’ll buy a motor home ifylu cone drive it for ne.
This is what I take. It is a liquid. Not sure if they come in pill form.

https://smile.amazon.com/gp/product/B000M7OOPS/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I can’t remember where you are, but maybe next time I’m there we can take a little trip?
 

CSMLSM

Senior Member
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645
How long did it take you, and about what level of severity were you?
How long is not straight forward. 20years experimenting on myself to find why something worked for me a little and then finding a better molecule to do more of that. So from most recent recovery which looks to be final approx 2-2.5 years. First part CBD then Caryophyllene which I source from Copaiba essential oil.

My severity has been everywhere but my worse was bedbound, light/sound/heat/cold/humidity/touch sensitive, chemical sensitive, food intolerant, severe cognitive dysfunction with dementia type symptoms unable to hold a sentence or remember what someone just said, tinnitus, muscle cramps, adrenal pain, adrenal fatigue, HPA axis dysfunction/dysautonomia, IBS.

I just wanted to show briefly the comparison of Caryophyllene and LDN. | Phoenix Rising ME/CFS Forums

Here is something about caryophyllene and a product available
Amazing non-cannabis cannabinoid: Caryophyllene 3 - YouTube
 

Strawberry

Senior Member
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Location
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you think the grapefruit seed oil is a key ? Or was it the cumin? Or was it the actual vacation
Grapefruit seed oil has nearly wiped out the sick part of my PEM. Cumin only helps me minimally. I usually take it on a Friday before I overdo doing laundry on the weekend. GSE I take daily and get worse if I quit.

Ultra low dose naltrexone has given me a gentle rise in energy, that doesn’t make me crash as hard as low dose did.

It definitely wasn’t the vacation, but being in the mountains for a week did help me short term.