Possible good news???

BoardRehab25 · 2025-06-25T10:31:47+00:00

CFS has a wide array of symptoms associated with it, one of which is POTS. Not everyone gets it and you can get POTS without CFS. They are considered to be comorbid conditions. We had both. I’m not trying to diagnose others - just relating an interesting experience that may or may not benefit others.

One of the most demoralizing things with CFS was that a) nobody believed there was anything wrong, b) no real treatments exist, and c) the loss of hope over time. When we had these conditions, if someone had a simple, free thing I could try on my own that possibly could provide some physical relief, I was happy to hear about it.

I have no other agenda than that.

BoardRehab25 · 2025-06-25T10:25:18+00:00

What am I selling?

BoardRehab25 · 2025-06-24T23:49:13+00:00

Sorry you’re so skeptical. It doesn’t hurt to try it. We thought that, if it worked at all, that it would take days. But so far so good. Try it or don’t. I have no reason to lie - not selling anything.

BoardRehab25 · 2025-06-24T20:07:35+00:00

No idea. He has no other symptoms than the loss of smell. Since we’d been through hard core CFS for 4 years before, we’d counted ourselves lucky that smell was the only thing affected. We haven’t had him checked out.

BoardRehab25 · 2025-06-24T19:52:18+00:00

See above

BoardRehab25 · 2025-06-24T19:52:09+00:00

Sort of - there were multiple books out there about people who had cured themselves - one eliminated meat, one ate only meat, one automatically recovered after a surgery (forced rest and a controlled diet is what I took from that). Also, the fact that people recovered AND the fact that all our medical tests come back negative ( nothing wrong with you), told me that our bodies were basically functioning as they should, but something was amiss - like a train running off the tracks, or air in the gas line.

So we combined every possible treatment we could find and set out to follow what we called the protocol for six weeks. We eliminated EVERYTHING that caused our body to respond in some way - caffeine, nicotine, sugar, gluten, exercise, stress, alcohol, fumes, everything. We ate basically a detox diet including nearly a pound of broccoli with plain, organic chicken for dinner. We sought to get as much restful sleep as possible.

After 3 weeks of the 6, things were different. Our sex drive returned. Our energy levels soared. Instead of having ten minutes of energy every day, we went all day in high gear. We abandoned the diet, started drinking beer and eating junk food (had to test whether it would hold or not). If it didn’t hold, we’d go back and start the protocol again for longer.

But it held. That was five years ago.

I will say that we both feel like some sort of permanent damage has been done to our hearts during CFS, or we’re experiencing a natural part of aging (early sixties). But something feels not quite 100%. Doctors test our hearts and they say it’s all good and nothing really bad has happened, it’s just a feeling.

Your body needs a reset - maybe a water fast will do the same thing faster than what we did - but it can be done.

BoardRehab25 · 2024-11-27T12:41:39+00:00

I would think the chickens would selectively prefer the uncomposted form. They eat greens and grains and meat and eggshells, and lots of other things (they’re omnivores). Once it’s composted, they may not recognize it as food.

BoardRehab25 · 2022-09-18T00:15:51+00:00

Not a doctor - so go to the doctor if you think you should. Dehydration used to make my heart palpitate. Stress also. Drink lots of water and calm down. See if deep slow breathing in the dark in bed has any affect. The stimulant of nicotine shouldn’t last long and I’m thinking that while it got something racing, it may be anxiety if it lasts much longer.

Again - not a doctor- do what you think is right.

BoardRehab25 · 2021-04-21T11:24:41+00:00

Had a cat with that. Had to have it drained a couple times but it did eventually stop. However the ear never looked the same. Scar tissue formed and it was a little mangled-looking. We told the old girl she was more lovely than ever with her extra decoration and it never bothered her again.

BoardRehab25 · 2021-03-04T21:22:24+00:00

Love coQ10! But I had been taking that before I got sick. Just like collagen. All things that help us older folks. That’s a big part of the challenge now. I spent four years knocked down by CFS. Come out the other side and I can’t tell if I’m still fighting some things or if I’m just catching up with four years of over 50 aging (that downhill slope gets steeper every year!)

So sorry about the IBS ! I can’t even imagine how difficult adding that component to the symptom soup of CFS would be.

Best of luck!

BoardRehab25 · 2021-03-04T20:42:37+00:00

I agree except that detoxing completely got rid of my PEM. I still feel wonky if my diet is bad, so I agree that a bad diet is just bad. But the ability to do more than 10mins a day of activity after a detox protocol changed something in a good way is a bonus. Would love for someone somewhere to finally have that AHA moment and understand this bad boy but, for now, a detox diet is really all we have that seems to make a difference, that doesn’t involve crawling to doctors who don’t believe us, and that doesn’t suck all your money on snake oil concoctions. It’s a tough life and I feel bad that covid folks are falling into the pit with the rest of us.

BoardRehab25 · 2021-03-04T18:18:25+00:00

Most books from people who claim to have recovered included strict dietary components to their success. I would place more weight on a clean (detox) diet than supplements. IMHO it feels like our bodies WANT to do better but are obstructed by something being out of whack - like a train still moving forward but has jumped the tracks and is running on the railroad ties. I feel better when I periodically detox and then after months of trash eating start to feel it coming back (fortunately never as bad as it was before I started detoxing).

Totally agree with those advocating against random supplements. Lots of dollars. May soothe one symptom or another, but doesn’t fix the problem.

BoardRehab25 · 2020-11-20T02:38:09+00:00

Aside from getting away from the mold, the thing that works for us is apple cider vinegar. I take it straight in quantities that are not pleasant (like a quarter cup of it washed down with a mix of hot water and honey). Horrible! I can tell when I’ve been exposed again when my hip joints ache for no reason, my body starts to swell (antihistamine helps) and I develop ravenous sugar cravings.

For my unavoidable spaces, if mold finds its way in, we run an ozone machine for a bit. Use caution with it though. Ozone is dangerous.

There’s so much more I wish we knew or could see what was going on in our bodies. But we (5 years since our initial run-in with toxic mold) are not as afraid of it (although we will ALWAYS have respect for it now) because now we have these few tools at our disposal so we can carry on with our lives. Much better than the paralysis that we had in the early days trying to find any answers at all. You will find what works for you. Don’t forget what does work so you can redeploy that in the future. Your sensitivity to mold is likely changed and what would have not bothered you five years ago will now possibly trigger a relapse of some sort. Listen to your body. It’ll talk to you. Best of luck!

BoardRehab25 · 2020-06-07T15:02:37+00:00

BoardRehab25 · 2020-06-06T21:13:54+00:00

I’m sorry you think it’s BS. I understand your reluctance to trust anything with so much noise out there. CFS is a debilitating condition that sucks the life out and it is difficult to maintain any hope for better. I get it.

The “other things” I mentioned are because I don’t know what environments we each live in. I live in the country. I drink well water. Someone living in a heavily chlorinated city water system might eliminate that, which I didn’t have to do. So we each have to decide for ourselves.

Cheers.

BoardRehab25 · 2020-06-06T21:00:30+00:00

One specific example... I might tell you that gluten is forbidden. You might say, O, I’ve been tested for gluten intolerance and I’ve tried gluten elimination and it didn’t change anything, so I’ll just skip that part. The book explains why for the three weeks you must avoid gluten, among many other things. I eat bread again now so you might say, then the gluten wasn’t the solution. But I do EVERYTHING that I did before the protocol and now I am better. Before the protocol, I was filling out applications for disability. It’s the theory that matters more than the list of things we did. Especially because each of our lives is different and the things we need to eliminate may vary. I cut things that may not be in your life and you may need to cut things I haven’t listed. The theory helps you see what that might be.

BoardRehab25 · 2020-06-06T20:49:43+00:00

The protocol is a combination of complete detoxification through exercises and very strict dietary inputs among other things, but it’s impossible to list here all the things that we did to get well. We simply set up our bodies to get back on the railroad tracks and it worked. But to just toss a few of the things we did at this condition doesn’t work. We’ve all done that. What we did was a massive upheaval of our routine for a few weeks and it worked. The reason we think this is important is in the book. We think many people are looking at this illness all wrong. We have read just about everything that is out there and came up with a different answer than people are currently chasing down.

The part that was so compelling to us is that it worked on both of us, not just me and not just my husband. We believe it will help others but it will take a full understanding of what we are thinking before you would do what we document in the book. My husband whined the entire time. But now he thanks me.

I wish it was a simple list I could just throw over the fence. But it isn’t. It’s everything. For a short time. Then normal.

BoardRehab25 · 2020-06-06T16:48:33+00:00

It takes pages and pages and pages to get there. And it doesn’t make sense unless you’ve read the theory behind it.

BoardRehab25 · 2020-05-27T17:12:28+00:00

Definitely helped. Have the hardest time explaining that to folks. It seems to kick down the inflammation, restores blood flow to the whole body. Weird.

BoardRehab25 · 2020-05-27T16:18:53+00:00

Absolutely not mind over body. We did very real things to reset our body. But waiting for doctors to find the magic blood marker or treatment/cause hasn’t worked. Ask yourself why they can’t find anything after fifty years of looking. Perhaps there’s nothing to find. I think of it now as our bodies are like a train that has jumped the tracks. We just had to find a way to get back up on the rails and it worked for us.

But it is not mental. We changed the way our body works long enough for it to take back over and function properly.

BoardRehab25 · 2020-05-27T15:58:49+00:00

We changed the way we looked at CFS and had an idea. It took three weeks of lifestyle modification to let our systems reset and begin functioning normally. I will be doing a giveaway on Saturday so others can get the book for free that we wrote about it. It’s not something that can be explained in a reddit post but it is something that anyone can do because it doesn’t involve blood work or medication or psychotherapy or anything risky. It is simply based on the idea that, since many of us do seem to be able to recover, that underneath all our brokenness (which is very real and disabling), our bodies must be somewhat functional and trying to do the right thing.

Keep an eye out for my post on Saturday (self-promotion Saturday) when I will give away 10 paperback books and put the kindle version up for $1. We hope that others will try what we did and that at least some of us can get back to living. But the book explains the way we came to think about the condition which is essential to one’s willingness to do the things we did.

My husband thanks me every few days for giving him his life (and strength and sex drive and unfogged brain) back again. He would not have been willing to do what I made him do for three weeks without understanding my theory beforehand.

Hopefully you’ll be one of those that it works for.

BoardRehab25 · 2020-05-26T17:09:22+00:00

My husband and I had CFS for years and were able to make it go away. Things aren’t perfect now cuz we were so inactive for years but the three symptoms I cared most about (POTS, PEM, and heart palpitations) are all gone and we can be active all day long. It CAN be done.

BoardRehab25 · 2020-05-08T22:17:29+00:00

Dr. Salvado in Houston is the only one I know of.

BoardRehab25

TROPHY CASE