Short summary of meds i tried by now

[junkcrap50]

@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.

Would you attribute brain fog to be completely due to hypoperfusion? Or just in your case? Racetams and other neurotropics might be helpful for increasing brain perfusion.

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.

Ugh. That sucks. And some people need up to 9mg or even LDN 2x/day to see benefits. I've been meaning and wanting to play with the dosage, but can't figure out a systemic way to figure out the right dose for me, other than trial and error random doses.

 

[Wishful]

but can't figure out a systemic way to figure out the right dose for me, other than trial and error random doses.

Yes, I think trial and error is about it for practical options. It takes time and multiple trials, since there are so many other random factors affecting our ME each day. LDN made a big improvement in my quality of life (chronic pain really sucks), and since I lost the neuropathic pain after a year or two on LDN, maybe it was responsible for curing it. I expect that it won't work for everyone, but there are probably people who could benefit from it at the right dosage for them.

The things I learned from trial and error with LDN, that might benefit others:

It is a fairly narrow band for effective dosage, so do experiment with what's optimum for you.
Taking it sublingually requires ~30% lower dosage.
For me, each dose lasted less than 48 hrs, but more than 36, so I was able to alternate morning and evening doses every second day. I didn't notice any differences in effectiveness at different times of day, but that might be an issue for others. I prefer minimizing my pharmaceutical intake.
I didn't have any problem starting with the standard 4.5 mg dosage, but others reported needing to ramp up slowly from very small doses.
I noticed full effects the day after the first dose. I went for a hike, and discovered that the crippling muscle aches were simply gone.
LDN didn't affect any of my other ME symptoms. I think it has different effects for other people.

 

[Badpack]

@junkcrap50 i tried brain perfusion meds or blood vessel dilators like NO. But both did nothing or even worsened my symptoms. Seems like if you force it, it doesnt work the same way.

 

[Hip]

Yes, I think trial and error is about it for practical options. It takes time and multiple trials, since there are so many other random factors affecting our ME each day. LDN made a big improvement in my quality of life (chronic pain really sucks), and since I lost the neuropathic pain after a year or two on LDN, maybe it was responsible for curing it. I expect that it won't work for everyone, but there are probably people who could benefit from it at the right dosage for them.

So the elimination of your neuropathic pain by LDN took 1 or 2 year, a slow a gradual process. How many months of LDN treatment would you say it took before first noticed the beginnings of the decrease in your neuropathic pain level?

Do you think this neuropathic pain you had was the same as the muscle and/or joint pain that many ME/CFS patients have, or is the ME/CFS muscle/joint pain something different?



You say that you noticed you muscle ache disappear after the first dose of LDN:

I noticed full effects the day after the first dose. I went for a hike, and discovered that the crippling muscle aches were simply gone.

So am I right in thinking that what you are calling your neuropathic pain is different to the ME/CFS muscle/joint pain?

 

[Wishful]

How many months of LDN treatment would you say it took before first noticed the beginnings of the decrease in your neuropathic pain level?

I didn't notice a decrease over time. For the period when I had the problem, I took LDN daily (or later, alternating morning/evening every 2nd day). If I forgot my dose, the pain would be back, seemingly as bad as ever. Then one day I either intentionally didn't take the dose or I forgot, and the pain simply didn't come back. Something had switched state. That seems to be the common response to my treatments for my ME: the treatments switch me from having the symptom to not having it, and then eventually leaving me in the more-or-less permanent 'off state'.

My potential for these neuropathic pains is still there. I experienced them yesterday, for no cause that I could identify. However, these occasional experiences of that pain only last a few hours and no longer leaves me in that state.

Since I don't know how other people experience pain, I can't say for sure that mine is the same or different. My pain didn't seem to come from joints (or skin or other organs); just muscles. Also, aspirin, acetaminophen and ibuprofen had no effect on these pains, so if other PWME's pains are reduced by these, then they aren't the same source of pain. My pains didn't change with physical activity either. The level of pain remained the same whether I sat for hours or hiked for hours. I think LDN was the only thing that affected the severity positive or negative.

 

[Hip]

I didn't notice a decrease over time. For the period when I had the problem, I took LDN daily (or later, alternating morning/evening every 2nd day). If I forgot my dose, the pain would be back, seemingly as bad as ever. Then one day I either intentionally didn't take the dose or I forgot, and the pain simply didn't come back. Something had switched state.

So you are saying the pain-relieving benefits of LDN kicked in quickly?

Above you mentioned that "since I lost the neuropathic pain after a year or two on LDN". So I had the impression that it took a year or two before LDN managed to eliminated your pain.

 

[Wishful]

So you are saying the pain-relieving benefits of LDN kicked in quickly?

Yes, I took the first capsule, and the next day the neuropathic pains were completely gone. During the time I took LDN, missing a dose meant a return to full pain. It took a year or two before missing a dose stopped allowing the pain to return. Now I just have occasional days where something triggers it for at least a few hours. Very much an on/off switch effect: 100% blocking or 0%.

FWIW, my minimal dosage requirement was pretty sharp. 2.25 mg sublingual would provide complete blocking, while 2.0 did almost nothing. LDN stopped working again somewhere over 6 mg.

 

[thingsvarious]

It might not be an immune issue