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

@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.

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.

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.

@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.

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.

Hi @osteogirl111, you may be interested in these related discussions about:
- hypoglycemia https://connect.mayoclinic.org/search/discussions/?search=hypoglycemia%20
and
- mitochondria https://connect.mayoclinic.org/search/discussions/?search=mitochondria

I have had ME/CFS fibromyalgia for 20+ years. LDN (low dose naltrexone) keeps the pain under control. Fatigue & brain fog are my major issues. Recently I had a flare up & brain fog was so bad I couldnt concentrate at all. I couldnt get the slightest amount of activity, forget the little 10 minute walks I had just built up to. Couldn't drive.
Had to make a trip to Tucson, an hour to the rheumatologist, & was exhausted for 2 days after (so, PEM). Dr is trying me on Modafinil, a stimulant. At 100 mg I could stay awake during the day & hold eyelids open! Major!! Nausea was bad at first but taking it with food cured that. Worst side effect is increase in BP (blood pressure). I added 50 mg (dr says goal is get up to 200 mg). Able to focus, but BP major concern due to my heart issues. So pharmacist said to consider switch to Adderall, but from what I read, that also has the BP side effect. I have phone appt with her on 26 so hope to get some guidance. I know it would be best not to take modafinil, but my energy was kaput & cognitive issues annihilated my ability to concentrate. I can now walk 5 blocks. I do have appt with a dr who is part of a long Covid research team, which my dr says is same symptoms as ME/CFS, but can't see him until Jan. Meanwhile am following the research on long Covid, the meds they are using (which, theory is, would also help us with ME). And I follow Health Rising for the latest news, & read Bateman Clinic (SLC which does treat only these fatigue disorders). This is a constant struggle for those of us who do not have the energy to struggle!

I tried sirolimus without effect, but had same response to Abilify--it worked great for 3 mos. I was able to walk an hour, which i had not done in years. Then it quit. Have re-tried several times but no help. I am on Modafinil now, which is helping, but as my article below says, raises BP so dont know if safe to stay on it. Will see my cardiologist. Maybe I should try sirolimus again. I do have some left I think. Will ask dr.