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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Treatments that have worked??

Messages
22
I am so ill, really just can’t do this anymore..Constant pain, constant aches, I am unable to function at all anymore. I’m sleeping most of the day, with no energy for anything. It’s become really bad. Terrible brain fog, cognitive issues, no motivation... Any time I leave the house, I get aches, horrible fatigue, and really bad PEM, I’m crashing constantly, always in pain, Exaustion, and no energy whatsoever for anything.

I understand that each person is different, and there are things that have worked for some, and I’ve even read of remission stories, but for me I seem to be struggling finding something that could work for me, because nothing so far has, not even slightly!

Is there any remission stories out there, anybody that would be able to suggest a treatment that perhaps has worked, to any degree?? At least to improve things a bit...I have tried many supplements, but I still seem to be getting worse with each day.

What I have already tried: CoQ10, D-Ribose, L-Cartinine, LDN, Vitamin C,D,B-complex

I need to get better because my life is slipping away...I can’t handle this anymore. Any suggestions from any kind souls?? I know that the disease deals with Mitochindria and Energy production, but all classic ATP and mitochondria supplements have not helped me...and I’m just so stuck as to what to do and any help would really be greately appreciated.

I thank you for reading.
 

Runner5

Senior Member
Messages
323
Location
PNW
First camp out at your doctors and get every test run and out of the way so you can rule everything out. There are a lot of avenues to arrive at being chronically fatigued and you need to make sure you don't have anything else lurking in your health. This is tedious, takes a lot of time (and for me money) but you just gotta go through it.

I've been treating my illness as if it's metabolic, here is a really good article that discusses it. It has also been discussed by the main researchers of CFS / ME that there are similarities in the blood: https://www.healthrising.org/blog/2...ell-us-chronic-fatigue-syndrome-fibromyalgia/ -- however that said - it is not fully understood. I had a way more difficult time with fatigue then my father who is 30 years older than me with full blown Type II diabetes.

I'm on a whole food plant based diet and what really flipped the switch for me is when I started doing that as if I was diabetic (Dr. Fuhrman's book, "Eat to Live" and his Diabetes books are now on my shelf with highlighter and dog ears).

I'm early on but so far this is the best I've felt in in years, maybe the best I've felt in ten years, I feel better now then before I had CFS. I'm sleeping, I have the energy to exercise - NO PEM, none whatsoever. I've had to dial back every single supplement I take including amino acids. No protein shakes, no gatoraid, no supplemental cocktails. (I do take L-Tyrosine, B12, and Chlorella still, and will probably keep those!)

The Vegan diet I follow is almost a low-carb Vegan, it has a lot of carbs, it would freak my Keto friend out -- but it's all full of fiber, super complex, no simple carbs, low starch, no refined oils at all - no canola, no olive oil - none of that, but it does have some avocado, a handful of nuts, some flax -- so no refined foods. And the Furhman book isn't 100% Vegan, it does include animal products but I was Vegan going into it and plan to stick to that forever - I simply don't believe in eating animals or animal product, but before I was not nearly as strict about what I ate, I would have a Coke or I would have some crackers -- stuff that I've been avoiding. I had a lot of health food so I figured it averaged out. I also ate a lot of starch, and I've had to cut that drastically.

And hey, totally understand -- everyone here watches what they eat and tries to eat healthy. In fact I know that most people who suffer illness invest a tremendous number of hours and money studying food. I think I read every book, watched every YouTube - you name it and I failed again and again. I have all the greatest hits haha. I had kinda ruled out food based treatment at all because I had tried it so many ways so many times. But maybe it was the brain fog, I missed a few really important things.

I finally have energy.

(last week I could work out daily AND I made gains -- for so long I was perplexed, how do I work out and LOSE muscle instead of gain it?! I totally lost my running during the years with CFS, today I picked out a couch to 5k app).

I knew my blood sugar was prediabetic previous to this so I had tried Keto and Low-Carb but they didn't work for me although a lot of people on the forum say they have worked for them. Maybe it was the way I did it, it was too much fat for me.

So far so good, I've had a little GI trouble last couple of days and think I'm allergic to tomatoes. But over all doing great. I'm going to track the effects of the diet and also take my fasting blood glucose levels once a week to keep an eye on my blood sugar which runs a little high. I do want to see what this does long term and if I can get away from having full blown type II diabetes.

As a total aside -- noticed that a lot of people here treat ME / CFS with naltrexone/bupropion -- interestingly this combo is being used in weight loss conjunction to controlling metabolic disease now. So possibly it works because of the metabolic effect, but I'm not a doctor or anything.

I hope you get to feeling better. I know "changing your diet" sounds almost like too ridiculous and simple. I had such a nest of issues I never thought it would even begin to get sorted and I had started making end of life decisions with my family. I have my life back, maybe I'm not working or climbing mountains yet but I'm no longer my previous zombie self.
 

Wishful

Senior Member
Messages
5,651
Location
Alberta
I'll second dietary changes. Something you eat regularly might be making you feel worse than you might otherwise. It's something easy/cheap/convenient to do. Also, experiment with different foods, spices, etc; something might help you.

I've encountered several things that helped briefly and then stopped working, which seems to be common for ME/CFS. Prednisone worked great (full remission) while I took it the first two times, then never worked again (tried several times). LDN blocked my perceived muscle aches quite well, for a year or so, then stopped working. It was good while it worked.

The two things that work consistently for me are T2 (3-5 diiodothyronine, though iodine also works the same for me) and cumin (Cuminum cyminum). No one else has reported having a benefit from T2; one has reported benefits from supplemental iodine. I only need a dose every 21 days. Cumin (the regular spice found in stores) effectively blocks my physically-induced PEM, lasting three days. However, no one has reported having the same amazing response to cumin.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Finding my immune system was dysfunctional along with several chronic infections and getting treatment for them helped me a lot.

Though I was on a lot of supplements, I felt I was treading water, not improving. Valcyte helped clear my head and helped me improve, along with LDN and IVIG.

Figuring out I had POTS and getting the right combo of meds (pyridostigmine and propranolol) helped me exercise and stand without being dizzy or fainting.

Getting my hormones balanced was a great help - T3 and T4 for thyroid, hydrocortisone for adrenal insufficiency, and pregnenolone, DHEA, testosterone, estriol, and progesterone.

Ornithine and citrulline helped me sleep. BCAAs, glutathione, and not overdoing it helped with PEM. NAD+ helped me feel more normal.

B vitamins, particularly methylcobalamin and B6, as well as 5-MTHF, B1 and B2, and amino acids have helped tremendously. Researchers have found many of us burn amino acids for fuel, so we need 2-3x the normal amount of protein. (In this situation, a vegan diet would be inadequate.)

As for diet, a nutrient dense diet with ample organic/wild animal protein, healthy fats, lots of nonstarchy vegetables, seeds, and nuts is helpful. And staying away from food allergens - grains, cow and goat milk, and eggs.

A functional medicine doctor, an ME/CFS specialist, abd a dysautonomia specialist have all been helpful in running useful tests and devising a treatment plan.

Best wishes...
 

msf

Senior Member
Messages
3,650
FODMAP, Trazodone, gut treatment (sometimes), DCA (but watch out for peripheral neuropathy), arginine. The only one of these that abolishes PEM is DCA, although arginine seems to have some effect on this too.
 

Nanni

Senior Member
Messages
148
I'll second dietary changes. Something you eat regularly might be making you feel worse than you might otherwise. It's something easy/cheap/convenient to do. Also, experiment with different foods, spices, etc; something might help you.

I've encountered several things that helped briefly and then stopped working, which seems to be common for ME/CFS. Prednisone worked great (full remission) while I took it the first two times, then never worked again (tried several times). LDN blocked my perceived muscle aches quite well, for a year or so, then stopped working. It was good while it worked.

The two things that work consistently for me are T2 (3-5 diiodothyronine, though iodine also works the same for me) and cumin (Cuminum cyminum). No one else has reported having a benefit from T2; one has reported benefits from supplemental iodine. I only need a dose every 21 days. Cumin (the regular spice found in stores) effectively blocks my physically-induced PEM, lasting three days. However, no one has reported having the same amazing response to cumin.
@Wishful I started taking t2 and I think it’s helpful. Can I ask how you figured out that you only need it so infrequently. I have a hard time discerning what is what sometimes.
 

AlwaysTired

Senior Member
Messages
174
FODMAP, Trazodone, gut treatment (sometimes), DCA (but watch out for peripheral neuropathy), arginine. The only one of these that abolishes PEM is DCA, although arginine seems to have some effect on this too.
Whats DCA??
 

AlwaysTired

Senior Member
Messages
174
So the first question in my mind is, how long have you been ill? I was my most severe in the first 6 months to one year and have improved overall since then. Recommendations are tricky cause until this week really nothing worked for me other then rest and time (and I tried a lot of things)

I've been doing full body massage (self administered) for the past several days using those handheld massagers. Releasing all that tension in the muscles has done wonders for the anxiety, depression, and orthostatic intolerance that have resulted from having a depressed PNS/overactive SNS that comes with this disease.

On a hunch, I revisted a couple supplements that I got over a year ago (from a naturopath), which didn't work at the time, but just an hour after taking a few days ago my brain fog has lifted (could be coincidence, or they really could be working) These supplements are:

Mitochondrial NRG (manufactured by designs for health)

And a Pea Protein powder from Prescribed Choice

I've been trying to climb out of a major crash so I'm still mostly housebound but at least some of the worst symptoms are gone for now
 

AlwaysTired

Senior Member
Messages
174
I had a whole reply typed out and it disappeared when I went to fetch a link! Ok so first I am wondering how long have you been ill for? There is no universal treatment that works for everyone so it usually takes trial and error to find what works for you.

I tried a lot of supplements, treatments etc but here's what's worked for me:

Self administered full body massage (including abdomen, fingertips, toes, sides, scalp, face) has been amazing for treatment resistant anxiety/panic and depression, muscle aches and orthostatic intolerance that have resulted from a depressed PNS/overactive SNS that comes with this disease. Have been doing for past few days after reading about vagus nerve stimulation: https://thelivingproofinstitute.com/19-ways-to-stimulate-your-vagus-nerve/
We hold a lot of tension in our bodies that we aren't even aware of, in addition to any we may be. I think it's all the more important to release it if the body is trying to heal. Not to mention it improves circulation which is really good since CFS forces us to be sedentary

Mitochondrial NRG (supplement made by Designs for Health. Maybe it's a coincidence but my brain fog disappeared a couple hours after I took my first dose a few days ago and hasn't returned

Pea Protein Powder by Prescibed Choice. I took at same time as the above supplement so it's possible it's not doing anything but I'm sticking with it for now

The above two were given to me over a year ago by a naturopath. They did nothing for me at the time (and I took them for months) but had a hunch that they may help now so I revisted them

There's another supplement by Designs for Health called Metabolic Synergy that I take half a dose of but I started taking after I saw brain fog clear, so jury is still out on that one (I only take half the dose cause six pills a day of one supplement is redonculous)

Other things that have helped:

Guided meditation and chanting (for anxiety and panic)

Heating pad and/or laying in sun (for muscle aches, other flu like symptoms)

Echinacea tea (also for muscle aches, flu like symptoms)

Trazadone (for insomnia)
 
Last edited:

Wishful

Senior Member
Messages
5,651
Location
Alberta
@Nanni , I think we all have trouble discerning what is what. ;) If I feel better one day, was it this, or that, or just because?

As for how I figured out the 21-day T2 requirement, just experimentation and observation. The first dose gave me full remission for a day or so. Taking it daily for a few days made it lose effect. At some point, I decided to wait until I felt the need for it. What occurred was a fairly abrupt increase in general symptoms: ie. I felt really lousy, and didn't improve even after several more days. Taking the T2 then didn't give full remission again, but it did abruptly switch me back to normal baseline symptom severity. Some time later, I again felt the abrupt switch into worse symptoms, and again a dose of T2 reset something. After several repetitions of this, I found that the time delay was 21 days. Over even longer, I found that it was a precise and consistent 21 days. There have been a couple of times that I went longer than 21 days before noticing the worsening, but maybe I unknowingly ate something with a significant amount of iodine in it. I also experimented and found that iodine ( a small dab of tincture on starchy food) worked as well as the T2 capsules.

Keeping a food/activity/symptom journal is critical for figuring such things out. Our brains are terrible (even without ME/CFS) at remembering such things correctly. Keep as much detail as you are comfortable with. It won't always answer the question of what or when, since we may not be aware of some things that can affect ME/CFS, but at least you can be sure of things that you did record.

If T2 really does work reliably for you, please let me know. I keep mentioning it her on the forums because it works so well for me, but I'd like to know if it actually does work for someone else.

Hmmm, maybe we need some sort of sticky list of treatments people have tried and whether they worked briefly, work reliably, or didn't work (and maybe had bad side-effects). I wonder if there's anything that more than a few people will claim works reliably for them...and that they aren't taking in addition to three dozen other remedies each day.
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
Ketogenic diet

I haven’t had any symptom improvements for 5 1/2 years of ME and was streadily getting worse to the point where I’ve been housebound much of this summer. I started it two weeks ago. Now it’s very early days but I’m currently near remission. Please see my thread on this story.

You have to approach it very seriously, following the diet exactly and eating healthy fats. I give a lot of advice on thread.

https://forums.phoenixrising.me/index.php?threads/first-time-in-remission-with-ketogenic-diet.60886/
 

Nanni

Senior Member
Messages
148
@Nanni , I think we all have trouble discerning what is what. ;) If I feel better one day, was it this, or that, or just because?

As for how I figured out the 21-day T2 requirement, just experimentation and observation. The first dose gave me full remission for a day or so. Taking it daily for a few days made it lose effect. At some point, I decided to wait until I felt the need for it. What occurred was a fairly abrupt increase in general symptoms: ie. I felt really lousy, and didn't improve even after several more days. Taking the T2 then didn't give full remission again, but it did abruptly switch me back to normal baseline symptom severity. Some time later, I again felt the abrupt switch into worse symptoms, and again a dose of T2 reset something. After several repetitions of this, I found that the time delay was 21 days. Over even longer, I found that it was a precise and consistent 21 days. There have been a couple of times that I went longer than 21 days before noticing the worsening, but maybe I unknowingly ate something with a significant amount of iodine in it. I also experimented and found that iodine ( a small dab of tincture on starchy food) worked as well as the T2 capsules.

Keeping a food/activity/symptom journal is critical for figuring such things out. Our brains are terrible (even without ME/CFS) at remembering such things correctly. Keep as much detail as you are comfortable with. It won't always answer the question of what or when, since we may not be aware of some things that can affect ME/CFS, but at least you can be sure of things that you did record.

If T2 really does work reliably for you, please let me know. I keep mentioning it her on the forums because it works so well for me, but I'd like to know if it actually does work for someone else.

Hmmm, maybe we need some sort of sticky list of treatments people have tried and whether they worked briefly, work reliably, or didn't work (and maybe had bad side-effects). I wonder if there's anything that more than a few people will claim works reliably for them...and that they aren't taking in addition to three dozen other remedies each day.
@Wishful thanks for the great info. I’m inspired to get my journal going. I have trouble keeping track of the connections. It never occurred to me that I might need something that infrequently but I think with this I’ve noticed the same thing only I think it’s closer to once a week. I’m trying to figure out the new dosage for my thyroid medication. I’m needing about half of what I was taking before the doctor added testosterone. Balance....