I don't mind taking the risks. What is the best way to put cfs into complete remission?

cfsJapan

cfsJapan

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12
This is my first time posting on this site, so I apologize if I'm posting in the wrong place.

I have had CFS for 7 years, and to be honest, every day is hell.

Even if I try the "safe and easy" methods such as supplements and Chinese medicine introduced on reddit, it only gets better temporarily, and after a few weeks it goes back to normal.

So my question is, what drugs (treatments) are there that have a certain risk but can have a strong effect on CFS?

As far as I have researched, I felt that Ampligen and Rituximab have the potential. I also have personal hope that drugs that put autoimmune diseases into complete remission may also be applicable to the treatment of CFS.

So, what are the cutting-edge drugs (or drugs that are attracting attention from some) that have the potential to put a certain subgroup into complete remission, even if there is a certain risk?

For me, even if it is somewhat dangerous, the choice of betting on a miracle, even though there is a certain risk, seems more attractive than living a life of suffering like a zombie with CFS.

I am ignorant and stupid, so from the outside it may seem like a ridiculous idea. That is true. But CFS is really hellish suffering.

Please let me know if there is any promising treatment that could put me into complete remission, even if it's just a small piece of information. Even if it's only available in Norway or parts of Western Europe, I would fly there with all my money.

Also, please let me know if there are any information forums other than reddit where there are innovative discussions and information about treatments for CFS. I've already read up on Phoenix Rising to a certain extent, and tried LDN. I've reached the limit of what I can do with standard treatments. Every day is really painful.

(I'm using Google Translate for this text, so I'm sorry if it's hard to understand)
 
Blazer95

Blazer95

..and we built castles in the Sky.
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the most usefull approaches i have seen so far seem to be:

- LDN (made me worse, improves a lot of people though)
- LDA (seems to put a lot of people near remission. paused_me improved from very severe up to moderate with it)
- Pregabalin every second day (every day will shoot up the tolerance right into insanity)
- SSRI (improved me from mod-severe to moderate, very nice for me, made others worse)
- GcMAF or MAF (seems to improve some, seems to decline some)
- HBOT (seems to improve some, no effect on others)
- Phosphatidylcholine helps mainting energy for some, including me
- peptides like bpc-157, thymosin alpha - 1 seem to improve immune system function and bring some people back into life
- atorvastatin seems to dampen inflammation in some while making others worse
- blocking histamine and stabilising mast cells with desloratadin + famotidine leads to improvements in many.

most of these dont cause remission but heavy improvements. i have seen as much as a 2-level improvement in some of those so there is a hope of a "near-remission-experience". really curing ME though is fucking rare

DISCLAIMER: THIS LIST HAS NO SPECIFIC ORDER AND SOME POINTS MAY LEAD TO A DECLINE IN SOME PEOPLE AND WE STILL DONT KNOW WHY
 
cfsJapan

cfsJapan

Messages
12
Blazer95 said:
the most usefull approaches i have seen so far seem to be:

- LDN (made me worse, improves a lot of people though)
- LDA (seems to put a lot of people near remission. paused_me improved from very severe up to moderate with it)
- Pregabalin every second day (every day will shoot up the tolerance right into insanity)
- SSRI (improved me from mod-severe to moderate, very nice for me, made others worse)
- GcMAF or MAF (seems to improve some, seems to decline some)
- HBOT (seems to improve some, no effect on others)
- Phosphatidylcholine helps mainting energy for some, including me
- peptides like bpc-157, thymosin alpha - 1 seem to improve immune system function and bring some people back into life
- atorvastatin seems to dampen inflammation in some while making others worse
- blocking histamine and stabilising mast cells with desloratadin + famotidine leads to improvements in many.

most of these dont cause remission but heavy improvements. i have seen as much as a 2-level improvement in some of those so there is a hope of a "near-remission-experience". really curing ME though is fucking rare

DISCLAIMER: THIS LIST HAS NO SPECIFIC ORDER AND SOME POINTS MAY LEAD TO A DECLINE IN SOME PEOPLE AND WE STILL DONT KNOW WHY
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Thank you for the detailed explanation!

I actually once had a big improvement with SNRI, but after about 2 months, it went back to normal

Also, Clonazepam was effective for me temporarily

I think that the right psychiatric medication can be effective not only for the psychiatric symptoms but also for the physical symptoms of CFS

I tried Pregabalin, and it did have some effect

However, Tricyclic antidepressants are the most effective for me, but I can't continue because of the cardiac side effects. It would be great for me if I could continue with Tricyclic antidepressants...

I've been looking for a creative doctor or therapist who uses a lot of psychiatric and off-label medications...
 
C

Carl

Senior Member
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449
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United Kingdom
A first tip: Avoid Reddit ME/CFS forums. The person who runs those forums has written a book where he claims that ME/CFS/Fibro are all in people's heads. BTW he banned me. He peddles lie and misinformation. There has been articles on him and a thread revealing what he has done against people with ME, including writing a book, on this forum.

IMO after a massive amount of personal research, ME/Fibro is caused by a bacterial infection which changes the permeability of the digestive system causing inflammation and autoimmune reactions. There is also tissue destruction in two very important areas one of which has been fairly well indicated by people who have been found to have empty Sella and partially empty Sella. The hypothalamus is similarly affected. Add LipoPolySaccharides, highly inflammatory molecules from gram negative cell walls which are absorbed into the bloodstream in the colon where the gut wall is compromised. Doctors don't understand how the human body functions.

Do yourself a favour and avoid taking any new antimicrobials and antimicrobial herbs. The bacteria will adapt to them instantly they are exposed to them rendering them useless. Efflux Pump Inhibiting herbs can restore the antimicrobial effects to some degree but not to 100% therefore it's best to avoid them until the pathogens are destroyed. Biofilm protected infections can adapt to anything unless they are treated in the correct way.
https://ueaeprints.uea.ac.uk/id/eprint/70522/1/DV_thesis_final2019.pdf
 
H

hapl808

Senior Member
Messages
2,367
cfsJapan said:
I've been looking for a creative doctor or therapist who uses a lot of psychiatric and off-label medications...
Click to expand...

I think the suggestions you've gotten are good - those are many of the 'promising' medications. Unfortunately, often they don't work, or gains are temporary.

If you're in Japan, I believe there's also a doctor who does a nasal abrasive therapy (maybe called something like EAT - I can't remember). If I recall, he's down in Kyushu. Some people outside of Japan have also tried it, but I don't think I've heard of any huge improvements except at his clinic, so I'm skeptical.

Also, while every day might be awful - it's hard to judge where you're at. I thought things were awful when I was 'moderate' (housebound, constant discomfort). Then it actually got much worse, and I wish I were back there.

So my advice would be to still be careful on what you try and how you do it. The panicked 'I must get better' is not a great starting point (I know because I tried that).
 
W

Wishful

Senior Member
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6,162
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Alberta
cfsJapan said:
Please let me know if there is any promising treatment that could put me into complete remission,
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The problem is that even if there exists a treatment that could put you into complete remission, no one knows what that treatment for you would be. We all respond differently, so what is reported as an amazingly effective treatment for one, or even a few, individuals, is about as likely to work for you as an herb chosen at random. So far, no one knows what the mechanism behind ME is, so no one knows what should be targeted by a treatment.

"Works for a while, then stops working" is very common for ME treatments. Treatments that continue to work, or which result in a permanent cure of a specific symptom or response are less common. This applies to the latest super-expensive and risky drug that's been touted somewhere. My view is that since the super-expensive and risky treatments have about the same probability of working for an individual as some products found at a grocery store, it's sensible to start with the cheap, safe, convenient possibilities. My most effective treatments were from grocery stores, and my only effective prescription was LDN.

We're all waiting for that magic treatment that is actually reliable for ME.
 
K

kushami

Senior Member
Messages
536
If you feel your condition is autoimmune, you could try DMARDs or steroids. Reasonably easy to get hold of.

Some people with ME/CFS have had good results from steroids, either as PEM shielders (occasional use) or an every day low dose. Another option would be to tske an immune-suppressing dose for say three months, then taper, as would be done for rheumatoid arthritis or ulcerative colitis.

Not many people have tried DMARDs, as far as I can tell. Some of them are pretty safe, others require regular blood tests to check things like liver or kidney function or blood count.

Also, I think I already said this, but do check for orthostatic intolerance and consider low blood flow to the brain as possibilities. Orthostatic intolerance is usually somewhat treatable. I know it’s not the same as going into remission, but if you suffer from cognitive problems, improving them could be a big help. It could give you more brain power to plan your personal treatment program!
 
E

Empi

Messages
29
Agree on Jak-Stat Inhibitors. It’s relatively low risk as far as moonshots go. It comes with a cancer risk warning, but Rinvoq is used to treat eczema so take from that what you will. It’s probably the only thing that has a reasonable hypothesis as a potential cure, which has seemingly cured some people in real world usage. There are plenty of reports of no effect as well, but it’s still the only thing that is not super risky that has a chance of working.
 
M

Mouse girl

Senior Member
Messages
600
the only things I have heard of are some anti Virals and one kid who got better with some targeted intestinal anti bacterial drug. There were given by Dr Peterson, I believe.

But, other than those things which are best on kids, teens and those sick only a few years (7 isn't that bad, better if it was less than 5 but not bad), the only things i've heard of are diets. some people do find diets that help them alot and lifestyle stuff etc.

Diet helped me a lot but it's different for different people. Now this is just my view and observation over the decades but seems that diets mostly of flesh (red meat, chicken, maybe fish but hear more about meat and chicken) and veggies, some do ok with brown rice. some people see a lot of help, huge help. not a cure but some see huge difference in quality of life. I'm careful as I can be with chemicals and such, like never ever use regular laundry soap but i've always been sensitive to chemical stuff. You could try some of the diet stuff as it's free. It can be hard to do and hard to figure out what helps you but if you find a few things you can eat and then wait some weeks before adding anything, you can really see if something messes you up. good luck!

and then, you can try some of the expensive docs, like Peterson if he is still working or taking patients. but got to have some money to do that and the diets can be something to do right away and not dangerous, just hard for some to adjust.
 
Sushi

Sushi

Moderation Resource Albuquerque
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Mary said:
You also might look into JAK inhibitors, see this thread for example:

https://forums.phoenixrising.me/thr...e-cfs-patient-to-health-parts-i-and-ii.92824/
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This may be emerging as an effective treatment option for a subset though the clinical trials are for Long Covid which seems to be a very similar condition. https://www.reversinglongcovid.org/ (no money for ME/CFS trials)

I personally know two people who have had impressive gains from Rinvoq (the gains came after stopping the drug with the theory being that taking it for a limited time might reset our immune function). I also know of two others who have gone into remission though I don’t know them personally. One person is the person whose story is linked above and the other (who is still experiencing a progression of post Rinvoq changes) has so far has found that orthostatic intolerance has disappeared (blood pressure dropping over 30 points when standing for 10 minutes leading to syncope), sleep much improved, mental energy improved, hormonal and metabolic abnormalities normalized, and immune system changes such as regaining the ability to get a sore throat. The changing are continuing to emerge though it is too early to know if there will be complete remission. This person has had ME/CFS for many years.

Though JAK 1 inhibitors will likely only work for a subset, they are very intriguing and deserve study.
 
Daffodil

Daffodil

Senior Member
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5,894
FMT - Fecal microbial transplants. but be careful.

I think its in 4000 trials worldwide

several recovery stories on FB

everything that is wrong can be traced back to gut bacteria
 
H

hapl808

Senior Member
Messages
2,367
Daffodil said:
FMT - Fecal microbial transplants. but be careful.

I think its in 4000 trials worldwide

several recovery stories on FB

everything that is wrong can be traced back to gut bacteria
Click to expand...

This is so promising, but feels like we don't know enough yet so it's random luck.
 
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