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

[wolves2626]

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...

have you tried nortriptilin it is a version with little cardiac side effects i recall.
abilify may be then worth a try.

 

[dr. Arf]

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.

Are you a patient of professor KDM by any chance?

This is similar to his theory model.

 

[Carl]

No the ideas are my own and I came to them in January 2014. In 2015 while I was looking for a solution I was hit by Lyme disease and it's complications which I have been trying to deal with ever since.....

KDM? Is that Dr. Kenny De Meirleir?
https://www.journalismfund.eu/supported-projects/chronically-tired-wallet-professor-de-meirleir
I have just read that he claimed/claims that he believes that mycoplasma bacteria play a part in CFS/ME/Fibro which is a very different idea to my theories because I don't believe that there is any pathogen in the blood which causes the illness. However the high level of inflammation can disrupt the immune system function which can make it difficult for the immune system to perform it's normal function. My ideas centre around the compromise of the digestive barrier by potentially various pathogens which promotes inflammation, allowing food molecules and proteins into the bloodstream which promote an autoimmune reaction. My ideas also explain the excessive urination, the blood pressure associated problems caused by damage to both the Hypothalamus and Pituitary gland. He appears to earn his money from selling expensive treatments based upon his ideas which I don't think I agree with, however I would need to read more about his ideas before I can say whether I disagree with all his ideas. Do you have any links?
A role for a leaky gut and the intestinal microbiota in the pathophysiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
The announcement of that research project lead me to working out what causes it just after the project was announced. It was announced in late 2013 if I remember correctly. I did that before Daniel Vipond finished his PhD and released his paper.
I read a book called "Increased Intestinal Permeability aka Leaky Gut Syndrome" by Case Adams PhD which I still have with me to hand. It has some interesting details about the formation of the digestive system and it's population beginning with the mother and the babies birth. However I disagree with the treatments that he proposes. Plus thousands of research papers courtesy of Sci-Hub.

 

[Carl]

He does seem to put people on long term antibiotics but from what I see he does not treat the biofilm(s) and therefore the antibiotics will probably not have much success against the pathogens which cause CFS or Fibro. He seems to put people on expensive pig liver extracts which would have not effect against the pathogens. Our ideas are very very different and you are mistaken thinking that there is any connection.

 

[dr. Arf]

My ideas centre around the compromise of the digestive barrier by potentially various pathogens which promotes inflammation, allowing food molecules and proteins into the bloodstream which promote an autoimmune reaction

it still seems quite similar. His ideas change overtime, but he has always been focusing on the gut.

Inflammation in the gut (triggered by a certain infection) > bacterial overgrowth / permeability + translocation (SIBO) > chronic immune activation > dysimmune function > immunity out of balance (th1-th2), B cells affected, T cells not functioning properly …

this is example diagnosis:
Disturbed intestinal immunity due to Gram-negative sepsis, with increased lipopolysaccharides (LPS) from gram-negative intestinal bacteria (causing sepsis)
• stool examinations show Small Intestinal Bacterial Overgrowth
S.I.B.O. are large intestinal bacteria that grow in the small intestine and enter the body there

NOTE: I’m not saying he’s correct, but just laying out his core theory
(next to persistent Lyme infection)

He does seem to put people on long term antibiotics but from what I see he does not treat the biofilm(s) and therefore the antibiotics will probably not have much success against the pathogens which cause CFS or Fibro

- his protocols vary through the years: It’s not that much antibiotics these days.
More stuff like, Lyme protocols and trials JAK-inhibitors etcetera etc.

explain the excessive urination

Is that common?
I haven’t heard that much.

Daniel Vipond

Interesting paper I’ll check it.

However I disagree with the treatments that he proposes.

What treatments do you propose?
– and have you been successful with it?

 

[Daffodil]

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

not that random. if you find a very healthy person, have them tested, and do DIY FMT for a prolonged period of time, the likelihood looks pretty high that you will get results. Only a few people have done this for 1-2 years. It takes a lot of fortitude to do this. Eventually, I think you will recover. Then, you can taper off. It is not a long shot at all.

Most who can do this, live with their donor. With minimal time after defecation and minimal processing, they probably get some good anaerobes to make it work.

You can try THAENABIOTIC for less risk. Its sterile and has the metabolites only. It is helping me but again, cost is an issue

 

[Daffodil]

He does seem to put people on long term antibiotics but from what I see he does not treat the biofilm(s) and therefore the antibiotics will probably not have much success against the pathogens which cause CFS or Fibro. He seems to put people on expensive pig liver extracts which would have not effect against the pathogens. Our ideas are very very different and you are mistaken thinking that there is any connection.

I was curious if Abilify, which is helping a lot of patients, had activity in the gut. Turns out the drug targets fungal? biofilm. I am beginning to have a sneaking suspicion that fungus is going to turn out to be v important

 

[Daffodil]

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.

Sushi!!!! my old friend!!

 

[Thinktank]

KDM is the definition of a quack. Steer away from this psycho, don't even consider visiting him. You'll end up with empty pockets and a worsened health. I speak out of experience.

 

[gregh286]

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)

Prednisone medium to high dose for a 1 week or 10 days?
Like 40mg+ daily.

 

[bad1080]

Prednisone medium to high dose for a 1 week or 10 days?
Like 40mg+ daily.

why this might be a bad idea:

While glucocorticoids are anti-inflammatory in the periphery, they can be inflammatory to the central nervous system; these findings suggest this effect may be amplified in people with ME/CFS due to increased sensitivity to glucocorticoids.[1]

from: https://me-pedia.org/wiki/Glucocorticoid

 

[Wayne]

Prednisone medium to high dose for a 1 week or 10 days?
Like 40mg+ daily.

Hi @gregh286 -- Interesting suggestion. I'd be curious what the rationale is for it.

@cfsJapan -- For perspective on the prednisone suggestion. It's about 4x more powerful than the body's naturally made cortisol. So 40 mg. of prednisone would equal around 160 mg. of cortisol. The body makes approximately 40 mg/day of cortisol, so that's quite a difference.

My understanding is the body can tolerate high doses of prednisone for short periods of time (a few days perhaps). This can be a good thing, as I've heard the body can significantly increase cortisol when injured. But if continued longer-term, the body will stop making its own cortisol, sensing there's already too much in the system. That, long-term, would not be a good thing.

 

[bad1080]

Hi @gregh286 -- Interesting suggestion. I'd be curious what the rationale is for it.

@cfsJapan -- For perspective on the prednisone suggestion. It's about 4x more powerful than the body's naturally made cortisol. So 40 mg. of prednisone would equal around 160 mg. of cortisol. The body makes approximately 40 mg/day of cortisol, so that's quite a difference.

My understanding is the body can tolerate high doses of prednisone for short periods of time (a few days perhaps). This can be a good thing, as I've heard the body can significantly increase cortisol when injured. But if continued longer-term, the body will stop making its own cortisol, sensing there's already too much in the system. That, long-term, would not be a good thing.

Adrenal insufficiency occurred even with low dose (<5 mg prednisolone equivalent) and short duration (<4 weeks) glucocorticoid treatment and following tapered withdrawal. It persisted in 15% patients retested 3 years after glucocorticoid withdrawal.

from: https://bpspubs.onlinelibrary.wiley.com/doi/10.1111/bcp.14679

 

[BrightCandle]

In recent years I have seen a few people have remissions on a few particular drugs.

1) Doxycycline - We really don't understand this one but renegade research and remission biome were created off the back of this finding. Not without its risks since its an antibiotic.

2) Benzos - some people get a lot of boost from taking benzo's and can feel almost normal for a while. The effect wears off and then you end up with a benzo dependence problem which will take years to fix!

We have been seeing a variety of stuff in the Long Covid space work for a few people like various antivirals, Jak stats and rapamycin. Not seen enough of these to have good confidence in them but they are all getting trials at the moment.

I personally have had a remission event twice from morphine injections, first one lasted about 6 months and was slow onset and the other was quick onset (next day) but lasted about 2 weeks. Both times got to about 80% normal. Tramadol has a smaller but similar effect.

I don't recommend taking any of these at all, more evidence of value to us is required!