I've been here for 30 years.

[Wishful]

Do you mind sharing these please?

Cuminum cyminum (stopped PEM and another problem that had been treated by T2)

Spoiled coconut milk (flushed out a bad bacterial strain causing type IV food sensitivity)

LDN (maybe the aches the LDN blocked went away for another reason, but it happened after 2+ years of LDN).

Carnitine (blocked an intolerance of fatty acids; only needed it ~3 months)

Probiotics (cured an intolerance of fermentable dietary fibre)

I'm not sure whether T2 (3-5 diiodothyronine) cured the "worse than baseline" symptoms, or whether that problem was cured by whatever cumin did that permanently blocked my physically-induced PEM.

If there was another one, I can't recall it right now. I drove to town yesterday, so I'm brainfogged today.


Don't expect that these treatments will have the same effect for you. It's not totally impossible, but since other people have tried all these treatments (maybe not the spoiled coconut milk) without success, I'm guessing that the chance of any of these working the same way for anyone else is similar to one of those lotteries with lousy odds. On the plus side, the fact that I did get such good results from these six wildly different treatments means that there are probably other treatments that might work for other individuals. Finding them is the tough part. Actually, noticing that something worked is also quite important. Cumin might have been an effective PEM blocker for me for many years before I actually noticed that expected PEM didn't occur after having cumin the previous day. You can't recognize an effective PEM blocker if you managed to avoid PEM triggers while the blocking was in effect (a dose of cumin blocked it for 3 days). So, if you have one of those "better days", was it from something you consumed? If you keep a food/activity/symptoms journal, maybe you can figure out what caused the improvement.

 

[Artemisia]

Try lots of things, and if you're lucky, you'll find something that does work for you. I've gotten lucky at least 6 times so far, in 20+ years of this.

The problem is that sometimes experimentation makes you worse. I've had some significant permanent lowering of baseline from trying various supplements and diets. A supplement I took for a month in 2014 pushed me from mild to moderate and I've never climbed back out.

 

[Booble]

Spoiled coconut milk

Spoiled?
What's the story there?

 

[lenora]

@Booble.....Yes, I try to ignore the way I feel in the morning. Get up and start singing anything happy. It makes me feel better. I seldom get dressed now, but have a lot of caftans, etc., that are pretty looking. With make-up on (little) and a smile, I'm ready to face the day.

Of course if I'm going to the doctor's, I dress in street clothes. I have nerve damage around my waist, thus the looser gowns around the house.

I don't have POTS now, but used to before it was diagnosed. Now my problem is out of control blood pressure that is only helped by taking two drugs. Fortunately, they help.

I can't do much after 4:00 p.m., and I'm certainly not going to waste energy on the phone or talking to people. throat goes, speech, etc. My body has had it.

Insomnia is my biggest plague. A lot of nights are spent fully awake and I can't say that I feel a lot better if I sleep. Two or three nights of sleep make a big difference. Zero energy, but I'm not the worst.

You have a good attitude and I hope it continues to work for you. I'm off to see my cardiologist now. Yours, Lenora

 

[Wishful]

What's the story there?

It was a can of coconut milk from a store that sold "odds&ends" at low prices. The milk looked yellow, but didn't smell bad, so I assumed it was a cheap Chinese product that saved money by not bleaching. I made curry with it (tasted fine) and ended up with a good flushing out of my digestive tract. The next morning, my type IV food sensitivity of 2.5 years was completely gone, permanently. So for me, yay for spoiled coconut milk!

 

[Wishful]

The problem is that sometimes experimentation makes you worse.

It is a gamble. If you never gamble, you will never win. My "wins" with ME treatments have been well worth it. However, I've never had to pay the price of permanent lowering of baseline. Some people seem more likely for this to occur, and some less likely, so being bold with experimentation isn't guaranteed to be good advice for everyone. If you've had permanent degradation from experimentation--intended or just normal food variations--then you'd probably be more hesitant to try new things. For me, I've chewed on various leaves I've found in the woods (no successes yet, but no bad effects either).

 

[Booble]

It was a can of coconut milk from a store that sold "odds&ends" at low prices. The milk looked yellow, but didn't smell bad, so I assumed it was a cheap Chinese product that saved money by not bleaching. I made curry with it (tasted fine) and ended up with a good flushing out of my digestive tract. The next morning, my type IV food sensitivity of 2.5 years was completely gone, permanently. So for me, yay for spoiled coconut milk!

Well whaddaya know. Yay for spoiled coconut milk!

I used a can of coconut milk the other day and was inspecting it carefully to make sure it hadn't gotten bad.
(Unhealthy fear of botulism!)

 

[Booble]

It is a gamble. If you never gamble, you will never win. My "wins" with ME treatments have been well worth it. However, I've never had to pay the price of permanent lowering of baseline. Some people seem more likely for this to occur, and some less likely, so being bold with experimentation isn't guaranteed to be good advice for everyone. If you've had permanent degradation from experimentation--intended or just normal food variations--then you'd probably be more hesitant to try new things. For me, I've chewed on various leaves I've found in the woods (no successes yet, but no bad effects either).

You are way braver than I!
My experimentation amounts to things like -- drink more water. Eat more food with vitamin B's. Take a colder shower rather than a hot shower.
With a sensitive body that reacts to anything out of its norm I'm way too chicken to tempt it.

 

[Hope_eternal]

I'm not afraid of any respiratory viruses anymore.
I tried to take ivermectin when I didn't have a cold to treat my cfs directly, and it did absolutely nothing.

I was speaking with my sister this morning. She is a pioneer of taking all things alternative. She struggles with many ailments like lymes and Sibo. She was telling me she’s been taking ivermectin but not in pill form it’s in paste form which has been doing wonders for her. She’s been eliminating various parasites and slowly getting better. She learned about it from a podcast about a man that was basically dying from a severe case of lymes disease. He cured himself of the illness with the ivermectin paste and diet. He helped others suffering from all kinds of illnesses with the paste. I haven’t looked into it myself yet. Sounds very interesting. Once I find the link I’ll pass it on.

 

[ilivewithcfs]

I was speaking with my sister this morning. She is a pioneer of taking all things alternative. She struggles with many ailments like lymes and Sibo. She was telling me she’s been taking ivermectin but not in pill form it’s in paste form which has been doing wonders for her. She’s been eliminating various parasites and slowly getting better. She learned about it from a podcast about a man that was basically dying from a severe case of lymes disease. He cured himself of the illness with the ivermectin paste and diet. He helped others suffering from all kinds of illnesses with the paste. I haven’t looked into it myself yet. Sounds very interesting. Once I find the link I’ll pass it on.

Ivermectin is definitely more than just a "horse paste", as some people refer to it. It made a big difference for me. This drug got a bad reputation during the pandemic. I assume it was because the patent had run out, so there was no money to be made from it.
It's too bad, that it didn't cure my CFS. I did extensive research, before trying it. For most people with ME things get better, while you are on it, but the benefits disappear when the drug is discontinued.

 

[Booble]

This drug got a bad reputation during the pandemic. I assume it was because the patent had run out, so there was no money to be made from it.

It got a bad reputation during the pandemic because studies showed that it was not effective to treat COVID-19, despite the anti-science crowd touting it. In large scale studies it was shown to be no more effective than a placebo in stopping the progression of the disease.

https://www.nejm.org/doi/full/10.1056/NEJMoa2115869

 

[ilivewithcfs]

There are studies, that show ivermectin is effective, the other studies show,that it's not. Highly qualified doctos disagree on its effectiveness till this day. I'm not going to be the arbitre of truth here.
What I do know for sure, it's that entire medical sphere is corrupt to the core. Big Pharma influences everything: initial medial education, continued medical education, regulatory organizations, research and so on.
Here is a helpful report, if you want to know more about that.
I also want to leave here some factual evidence, that some of the major decisions made by key opinion leaders are based on profit, not science. These decisions did a tremedous damage to me, while I was struggling with treatment-resistant depression.
Light therapy is better than antipressants, and it's crearly safer, yet it's not a part of medical protocols, and overwhelming majority of doctors never prescribe it.
Omega-3 are safe and effetive for depression, yet doctors almost never use it, it's not in the protocols.
I have many more of these examples, but I'm brainfogged and tired right now to search for all of them. I fully recovered from my severe treatment-resistant depression when I started doing my own research into various studies. Prior to all of that, I thought, that most important medical decisions (protocols, official recommendations) are based on science, but I was wrong.

 

[Booble]

There are studies, that show ivermectin is effective, the other studies show,that it's not. Highly qualified doctos disagree on its effectiveness till this day. I'm not going to be the arbitre of truth here.

I'm sure Ivermectin is effective for some things but it's not effective for treatment of COVID-19. While it looked to be promising, it sadly turned out to be otherwise.

 

[Guwop2]

It is a gamble. If you never gamble, you will never win.

just to balance this view, i tried high-strength b1 in September that sent my baseline spiralling and i have not recovered. it's impacted my ability to read, engage with things that require a modicum of concentration and have put back in the house/bed. Id never been suicidal before this point, but my gamble with B1 has exposed me to the most desolate state of being that feels like being tortured on a daily basis.

 

[Wishful]

Id never been suicidal before this point, but my gamble with B1 has exposed me to the most desolate state of being that feels like being tortured on a daily basis.

Testing supplements and other treatments is a gamble with ME. We read plenty of articles about how supplement x is so good for us, but that's for people with normal responses to those things. For PWME, B1--or anything else--is helpful for some, worsens others, and is simply a waste of money for most.

B1 seemed helpful the first couple of times I tried it, but then had no effect. B3 directly induced strong suicidal moods. B12 also induced strong suicidal mood one time, but not after that. I've been very lucky in that I haven't had a bad reaction last for more than a couple of days. Others aren't so lucky, and so are limited in their chances for discovering something that does help.

Even if someone discovered the root dysfunction of ME, it probably wouldn't help with predicting what supplements would be good or bad for a given individual, since the upstream and downstream responses are so individualistic.

 

[dannybex]

I was speaking with my sister this morning. She is a pioneer of taking all things alternative. She struggles with many ailments like lymes and Sibo. She was telling me she’s been taking ivermectin but not in pill form it’s in paste form which has been doing wonders for her. She’s been eliminating various parasites and slowly getting better. She learned about it from a podcast about a man that was basically dying from a severe case of lymes disease. He cured himself of the illness with the ivermectin paste and diet. He helped others suffering from all kinds of illnesses with the paste. I haven’t looked into it myself yet. Sounds very interesting. Once I find the link I’ll pass it on.

I heard similar stories in a FB group a year or two ago. I tend to think ME/CFS is a result of multiple issues, but parasites are often not only next to impossible to turn up in a stool test, they're just not discussed very much, because 'We don't have them in the US'.

That of course is nonsense, but it's also worth noting that if you go back to many people's stories -- including quite famous cases -- an overwhelming majority traveled in foreign countries a year or two before they just couldn't function anymore.

 

[Wishful]

parasites

Hey, what about parasites that evolved the ability to camouflage themselves as other, normal, body structures, such as cilia lining our intestines? Alien parasites! If our bodies have entire organs that researchers only discovered recently, they could miss some sneaky alien parasites too.

Sorry, too much science fiction.

 

[dannybex]

Hey, what about parasites that evolved the ability to camouflage themselves as other, normal, body structures, such as cilia lining our intestines? Alien parasites! If our bodies have entire organs that researchers only discovered recently, they could miss some sneaky alien parasites too.

Sorry, too much science fiction.

Google, etc., is your friend. But even the CDC admits this:

"Diagnosis of any stool parasite may be difficult; by submitting several stool specimens, your chance of being diagnosed correctly is higher than by submitting just one sample. If you receive a negative lab report, your physician may choose to send another sample to a different lab for confirmation."

https://www.cdc.gov/parasites/references_resources/diagnosis.html

 

[dannybex]

Here's one more:

https://www.cdc.gov/parasites/resources/pdf/npi_factsheet.pdf

 

[Booble]

Hey, what about parasites that evolved the ability to camouflage themselves as other, normal, body structures, such as cilia lining our intestines? Alien parasites! If our bodies have entire organs that researchers only discovered recently, they could miss some sneaky alien parasites too.

Sorry, too much science fiction.

Husband had parasites. Went for over a year having completely loose stools every morning. They tested the poop, found parasites, gave him medicine to kill them. Cured him right up, stools turned normal.
He's not a CFS/ME person.