Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments

Posted by webdog @webdog, May 13, 2018

I'm curious if anyone has found any treatments that help with ME/CFS.

Currently, I'm housebound and occasionally bedbound, and unable to work. I can leave the house perhaps once a week, but always with "payback" or post-exertional malaise. So I guess that would be moderate ME/CFS. I'm not usually bedbound for long periods like the severe patients.

For the past 2 years, my doctor has prescribed Valtrex + low-dose naltrexone. These treatments definitely help with some symptoms, and I'm very fortunate to have them. My quality of life has improved. However, these treatments seem to do nothing to improve functioning.

Although I've been sick for 40 years (following a viral infection), 5 years ago my health deteriorated dramatically on a (not Mayo) doctor-prescribed treatment plan that included increased exercise and a stimulant. Now, I seem to be unable to get back to even my previous level of poor health.

If anyone has found a treatment that helps with ME/CFS functioning, please do share. Thanks.

Interested in more discussions like this? Go to the Just Want to Talk Support Group.

@moi2558

Yesterday I drove to the store to get a carefully crafted small list of carryable (I like creating words others like us can relate to. Try it. You'll find humor in it too.), and the disabled slot was across from one of those new fangled vehicle charging stations. The thought came to me that I'd like to be able to plug myself into one of those things and as a matter of fact, once I make it out of the store, I'll be right over there. I'll even bring a comfortable folding chair, the book I'm presently reading and listen to my calming music on my phone. I'm not sure how much it would cost me as I can get pretty tanked out, thank you CFS, but would that be a great place for a group recharge? Why people with vehicles would have to take a number once our band of rechargers shows up. Just picture that! Everyone plugged in on a slow charge, laughter about the things we've found to laugh about, passing the tea kettle, electric of course, around, warm house shoes on feet resting on the cushions in the center of our circle, soft covers over our legs, why all we need is a cozy fire pit and we'd make a great postcard. O, you're topped off already, Charlie? Heading to the golf course aren't ya? Well, I hear they have a charger there for your car, golf cart and you.

Yes, there really is humor in the bleakest things. I recently enjoyed another carpet inspecting CFS event and found a long list tiny earring! Hey, I figured while I was down there I'd look around the geography. Found a dime too! What humor have you discovered out of the blue, or purple or whatever your favorite color, during, or whenever, a flare or after, that you can look back on and smile about? See you at the charger!

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@moi2558. Like others, I am relieved to know I am not alone. My 1st bout with CFS was 33 yrs ago, before it was officially a medical diagnosis. But then it was on the cover of TIME magazine in 1990, and I suddenly felt validated. It wasn't a cure, but I didn't feel like a medical freak anymore.

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I am now on sirolimus, generic for Rapamycin, which is used off-label for ME/CFS, but is actually a drug for anti-rejection for those with organ transplants. I take 3 (1 mg) tabs once a week. Just started about 2.5 weeks ago. Didnt feel anything until the 2nd dose, then gradually getting a little bit of energy. Still can't exercise, even pacing causes PEM, but according to the article I read in Health Rising blog about a dr with ME/CFS who was sick with it for 10 years, he noticed a difference at 3 weeks, then at 6 weeks in total remission! I am so hopeful I can be like him. Lately I had to sometimes spend a lot of time in bed, use a walker as so weak it was difficult to get around. Now I an sit up most of the day, so even that is a blessing. I have tried Abilify, which was amazing for about 3 months, then stopped working. Tried again a couple of times but not effects like the first time. I have been on modafanil, with no help at all. Several others but nothing has helped but this drug, which I have high hopes for. It is not covered by insurance, so I used the GoodRx to get it & was $88 for 30 tabs but I only take 3 a week. There is another place to get it that is safe, so my provider will order it there next time. $58 I think. The brand name is very expensive.

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I hope you are filling well now. Is there are any side effects from this medication? I know it can cause hyperglycemias. I tried it yesterday and I felt that my BS increasing. It is reduced after drinking chamomile tea though. I would like to see if it can help me with immune reactions to metals, chemicals, yeast, food and dust/ mold. As soon as I start detox from mercury or nickel I am getting bad side effects as I am allergic to them. Also have genetic problem with fatty acid oxidation in mitochondria that cause hypoglycemia for 10 years and now I experience hyperglycemia from carbohydrates and sometimes with no reason. One doc told that it could be autoimmune reaction of whole immune system though my Cyrex test for autoimmunity showed only 2 reactions in the gut and blood ( ALCA/ANCA and platelets disorder). I keep them in check with some supplements but I need to fix blood sugar problem and osteoporosis. I am not looking for more sufferings from drugs. I had all my health problems including autoimmune from drugs - fluoroquinolone antibiotic Cipro, toxic dental amalgams, synthetic progesterone and anti- reflux drugs. But I really need help with severe blood sugar problems at night with palpitations and chest pain.

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@osteogirl111

I hope you are filling well now. Is there are any side effects from this medication? I know it can cause hyperglycemias. I tried it yesterday and I felt that my BS increasing. It is reduced after drinking chamomile tea though. I would like to see if it can help me with immune reactions to metals, chemicals, yeast, food and dust/ mold. As soon as I start detox from mercury or nickel I am getting bad side effects as I am allergic to them. Also have genetic problem with fatty acid oxidation in mitochondria that cause hypoglycemia for 10 years and now I experience hyperglycemia from carbohydrates and sometimes with no reason. One doc told that it could be autoimmune reaction of whole immune system though my Cyrex test for autoimmunity showed only 2 reactions in the gut and blood ( ALCA/ANCA and platelets disorder). I keep them in check with some supplements but I need to fix blood sugar problem and osteoporosis. I am not looking for more sufferings from drugs. I had all my health problems including autoimmune from drugs - fluoroquinolone antibiotic Cipro, toxic dental amalgams, synthetic progesterone and anti- reflux drugs. But I really need help with severe blood sugar problems at night with palpitations and chest pain.

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@osteogirl111 Hello, I’m so glad I found your posting. I’m from the autoimmune Support Group so I can’t help much with your diabetes except to point to the Diabetes Support Group.
https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/
Once yo feel that you’ve got your diabetes straightened out, come back to autoimmune diseases and we’ll see what we can do for you.

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@becsbuddy

@osteogirl111 Hello, I’m so glad I found your posting. I’m from the autoimmune Support Group so I can’t help much with your diabetes except to point to the Diabetes Support Group.
https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/
Once yo feel that you’ve got your diabetes straightened out, come back to autoimmune diseases and we’ll see what we can do for you.

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I don`t have diabetes. I have hypoglycemia from toxicity and metabolic disorder in mitochondria. It is called FAOD. My BS sometimes increase but only when I eat carbs and detox myself. My AIC is normal so doctor say it is not diabetes. It is damage from immune reaction from metals, chemicals and food that I am allergic to. I have few autoimmune reactions but no real DX of disease. One is ALCA/ANCA reaction in the gut and another low platelet in my blood.

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