POLL: Which standard ME/CFS treatment protocols have you tried, and which led to major improvements?

[Stretched]

I only re-skimmed this thread so I’m not aware of covids19 has been reference. IAE, following the news shows
post COVIDS symptoms to nearly match our regular (mainstream) CFSME symptoms. Reports seem to lean on ME with CFS following since some argue distinct difference. There’s at least one other thread following the similarities. I hope this drum gets beating, LOUDLY! IOW, we take a respected publication in to GP and point out that ‘this’ illustrates my condition... .

Related indirectly, FWIW, My young neuro (early 30’s!) makes a distinction and opines mine is less ME and more CFS but he’s got some learned technical biases which he hasn’t expanded on. I’ll pursue and post if significant.

 

[uglevod]

Thanks for putting stats in - there is also some data on the recovery from CFS using antibiotics - I recall a posted link to the treatment of CFS using long term doxycycline.

I think both antivirals and antibiotics are needed to reduce chronic germ load.

 

[Hip]

there is also some data on the recovery from CFS using antibiotics - I recall a posted link to the treatment of CFS using long term doxycycline.

I don't think I have seen that link. This is the only treatment survey I've conducted. Though there is a thread listing recovery and improvement stories.

 

[Learner1]

You still don't have IVIG or Rituximab on this list or a lot of other treatments.

And still, for most of us, it's likely one treatment is the cure, it's the combination of several things on your list as well as the others.

 

[Hip]

You still don't have IVIG or Rituximab on this list or a lot of other treatments.

I would have liked to have included many more treatments, but when creating a poll on PR, there is unfortunately a limit to the number of answer options. So I was only able to include 6 treatments.

But I have been working on a more comprehensive poll, to be run using Google Forms.

 

[uglevod]

I don't think I have seen that link. This is the only treatment survey I've conducted. Though there is a thread listing recovery and improvement stories.

It was either a link or a doc header which I later loaded via sci hub

anyway here are some links on CFS treatments with antibiotics

https://www.prohealth.com/library/w...nsitivity-and-other-autoimmune-diseases-20645

https://www.jstage.jst.go.jp/article/internalmedicine/44/12/44_12_1258/_pdf

 

[Wishful]

@Hip , I just noticed the poll. LDN completely removed the neuropathic pains I had, which I considered a major improvement, but it had no effect on any other ME symptoms, so would you consider that MAJOR or MINOR improvement for my poll response?

 

[Hip]

@Hip , I just noticed the poll. LDN completely removed the neuropathic pains I had, which I considered a major improvement, but it had no effect on any other ME symptoms, so would you consider that MAJOR or MINOR improvement for my poll response?

For the purpose of this poll, it's only overall improvements in ME/CFS symptoms that are being considered and graded either minor or major; so unfortunately no place to include the benefits you observed for neuropathic pain.

However, your story would be very good to include in the first post of this thread: List of ME/CFS Recovery and Improvement Stories. At the bottom of the first post, it focuses on treatments which help specific ME/CFS symptoms. There is not yet a section for pain symptoms, but I can start such a section, and include you story.

Do you have post where you have detailed the benefits of LDN for your neuropathic pain? Then I can link to that post in the thread.

 

[Learner1]

@Hio, it's also a little ludicrous to expect one treatment will make that significant a difference. How about a combination of treatments for infections, immune support, thyroid and/or adrenal support, POTS symptoms, MCAS symptoms AND oxidative stress? Now. that's a more realistic scenario for improvement....

 

[Hip]

@Hio, it's also a little ludicrous to expect one treatment will make that significant a difference. How about a combination of treatments for infections, immune support, thyroid and/or adrenal support, POTS symptoms, MCAS symptoms AND oxidative stress? Now. that's a more realistic scenario for improvement....

Many ME/CFS patients take multiple treatments to address their various symptoms and comorbid diseases, so nothing new there.

 

[Learner1]

Many ME/CFS patients take multiple treatments to address their various symptoms and comorbid diseases, so nothing new there.

That's because it works. There is no one single cure for ME/CFS.

 

[Stretched]

[GROUP=][/GROUP]

@Hip , I just noticed the poll. LDN completely removed the neuropathic pains I had, which I considered a major improvement, but it had no effect on any other ME symptoms, so would you consider that MAJOR or MINOR improvement for my poll response?

...I sure find your post interesting and major, outside the poll. It may be helpful; perhaps others will see the same connection that struck me.

On top of MECFS I developed peripheral neuropathy in my feet. This is a very painful condition causing small nerve fiber dying. It’s somewhat common. It can eventually lead to a wheelchair =( The major pain is only effectively treated using opioids, which cause their own set of problems, not to mention being hard to get

I’ve got some LDN and have tried it, but I set it aside, thinking it was not doing much, if anything. After reading
you got serious nerve pain relief I’m going to go try it again, today! BTW, if you don’t mind, do you recall ~dose and was your nerve pain systemic or localized?

Thanks for posting. I hope others see it. If I get some favorable results, a thread might be helpful.

 

[Wishful]

BTW, if you don’t mind, do you recall ~dose and was your nerve pain systemic or localized?

My minimum fully-effective dose was 2.25 mg taken sublingually, which was ~1/3 more effective than swallowing the LDN, and which I assume means that it was working in the brain rather than on peripheral nerves. Also, the pain-blocking effect lasted between 36 and 48 hrs, so I alternated morning and evening doses every second day. I prefer minimizing drug usage, so I do try to find the minimum that works.

My pain was all over my body when my ME was particularly severe, but typically it was just focused on my front thigh muscles. That made walking an effort in enduring the pain. The day after my first dose, I not only did the same ~500m walk, but at that point I realized that I was pain-free, and continued hiking up a steep hill, and then continuing following trails for another km or two. It just felt so wonderful to be able to hike without pain. I could have gone further, but ME teaches us to not overdo things just because we feel temporarily better. The LDN worked reliably, allowing me to spend that winter going on long (several hours long) hikes, often daily. After a year or so, I tried going without it, and the pain simply didn't return. I'm pretty sure it took at least a year before the pain was permanently gone. I think it might show up occasionally when I'm having a really bad day, but that could also be pain from some other source.

FWIW, at one point I tried acupuncture, since the mental health clinic suggested it and I didn't want to get labelled "uncooperative". To my great surprise, the first treatment did seem to block the pain completely for a day or two. However, the second time I tried it, I didn't notice any benefit. So, my rating for acupuncture is: "Undecided. Try it and see if it works for you."

 

[Wishful]

Do you have post where you have detailed the benefits of LDN for your neuropathic pain? Then I can link to that post in the thread.

I've got quite a few posts mentioning my experiences with LDN. This one might be the best: https://forums.phoenixrising.me/thr...meds-i-tried-by-now.80341/page-2#post-2278877

If that's not suitable, tell me what you want a post to include, and I'll write it up. LDN made such a big improvement in my quality of life that I hoped that it would work for others too.

 

[Wishful]

@Hio, it's also a little ludicrous to expect one treatment will make that significant a difference.

I found four treatments that each individually made a major improvement in my quality of life. Cumin blocked and then cured my PEM. T2 blocked a worsening of general ME symptoms. Carnitine allowed me to avoid worsened symptoms from eating fatty foods. LDN blocked neuropathic pain. They didn't work synergistically; they seemed to be completely unrelated in their effects. I didn't encounter any situation where multiple different chemicals were required to cause an improvement in my ME.

There is no one single cure for ME/CFS.

If you count temporary remissions as temporary cures, then ME can be cured (temporarily) by a single chemical, and there are several chemicals that will do that (prednisone, cuminaldehyde, and T2 for me). So, I can state that there are multiple single (temporary) cures for ME. What we need is a cure that the body doesn't adapt to to put us back into the ME state.

 

[JohnnyMinnesota99]

Great poll. Could the medication "Arbidol" (umifenovir) be included? It has helped me to some extent! I have a chronic Coxsackie infection (CVB5).

 

[Hip]

Great poll. Could the medication "Arbidol" (umifenovir) be included? It has helped me to some extent! I have a chronic Coxsackie infection (CVB5).

That's interesting, what Arbidol dose are you taking, and how long have you been taking it?


Unfortunately there's not enough room in the poll to include more treatments (there are dozens which could included). You can only have a certain amount of poll answer options.

 

[Wishful]

It is providing interesting results even with only 6 treatments listed. We read lots of stories about 'this works great for me', but we hear a lot fewer of the 'I tried it but it didn't work', so it's good to see how many have tried it and what sort of results they experienced.

 

[JohnnyMinnesota99]

@Hip

Hello Okay,

So, I've been taking Arbidol for two months okay. I guess it's too early to assess the efficiency for my condition, but things feel slightly better... I will continue and keep you updated!

Best

 

[gbells]

GcMAF helped me restore immunity somewhat which stopped tooth loss after six root canals became reinfected and had to be pulled but this was at the cost of inducing systemic lupus erythematosus. All said, I like having teeth so I'd still do it (though I recommend people only do it for four months not the six months recommended which might prevent the SLE). There was no effect on the ME however so I put it down as a minor improvement.