Poll about whether you have got better or worse

[Learner1]

I am much better than I was 3 years ago.

Fixing hormone (DHEA, pregnenolone, testosterone, hydrocortisone, T3/T4) and nutrient deficiencies, particularly B vitamins, amino acids, antioxidants and minerals has helped. Glutathione and BCAAs help me avoid PEM. Keeping my Bs and antioxidants high has reduced peroxynitrite production which damages cell and mito membranes, so I could repair them and be able to make more energy.

Nutrients at first were geared to removing arsenic, cadmium, lead, mercury and platinum, then, adding PolyMVA, CoQ10, phospholipids and NAD+ to support my mitochondria. Regular phlebotomies for a genetic iron overload has also reduced mitochondrial damage.

Sleep was improved with melatonin, Seriphos, citrulline and ornithine, but I usually am fine without them now.

My immunodeficiency and autoimmunity were treated with mushrooms, LDN, high dose IVIG, and now Rituximab, after treating 5 chronic herpes family infections and a triple antibiotic combo for chlamydia and mycoplasma pneumoniae.

MCAS meds like cromolyn, ketotifen, ranitidine and benadryl have helped, and quercetin, vitamin C and B5 have helped mast cells too.

For my high BP POTS a beta blocker and pyridostigmine were helpful, but now that compound pyridostigmine is not available in the US, I'm having to try neostigmine, which has a shorter half life or Huperzine A which helped but was less effective.

I've been able to exercise about 9 hours a week with extremely careful management of my meds and supplements, and I'm in decent shape for a couch potato. Hyperbaric oxygen therapy has helped bring oxygen into my system to do good things.

No one thing has helped me mine to any of those levels you keep talking about @Hip. I still can't figure out where I was on that scale of yours 3 years ago or now, and nothing has jumped me up a level. But I was totally brain fogged, unable to complete tasks, sleeping 16 hours a day and crashing on sidewalks, pavement, floors, or the nearest chair or bed and now I average 7.5 hours a day of sleep, work part time, and exercise, while keeping up with my treatment. I still crash, but it's less frequent and more manageable. And some days are still bad while others are good. It's a journey....

 

[Hip]

I still can't figure out where I was on that scale of yours 3 years ago or now, and nothing has jumped me up a level.

The scale of mild, moderate and severe is not my scale, it a common standard scale used by various medical authorities to specify the severity of ME/CFS.

 

[ljimbo423]

I checked "I have found treatments which significantly improved my M. E."

I posted this in another thread but this is a good place too.

I have been disabled with CFS for 30 years this year.

For many years I was mostly bedridden and had no hope of improving my life. I had just come to accept that's they way it was and there wasn't anything I could do about it.

I reached a point though where I felt like I couldn't live out my life like that and decided that there had to be some way I could improve. So I slowly improved my diet and started to read about ways to treat my CFS.

Today, I do 5-7 hours a day of physical activities, like cooking, cleaning, karaoke, fixing things, etc, with little to no PEM. I went for about a 30 minute walk the other day, half of the time with a 20 pound backpack on.

Today is always my worse day for PEM (2 days after a lot of physical activity). But I have very little to no PEM.

What I have done and am still doing, is treating mitochondrial dysfunction, dysbiosis and brain inflammation. These things have dramatically changed my life, although it didn't happen over night, it is happening!

So my message is, it is possible to significantly reverse CFS even after 30 years of disability from it and being mostly bedridden for several years. Best of all, I continue to improve!!

So how far will I be able to go? I don't really know but my goal is to continue to treat my CFS until I'm 100% healthy. Then do whatever is necessary to maintain my health.

 

[Sarah94]

I checked "I have found treatments which significantly improved my M. E."

I posted this in another thread but this is a good place too.

I have been disabled with CFS for 30 years this year.

For many years I was mostly bedridden and had no hope of improving my life. I had just come to accept that's they way it was and there wasn't anything I could do about it.

I reached a point though where I felt like I couldn't live out my life like that and decided that there had to be some way I could improve. So I slowly improved my diet and started to read about ways to treat my CFS.

Today, I do 5-7 hours a day of physical activities, like cooking, cleaning, karaoke, fixing things, etc, with little to no PEM. I went for about a 30 minute walk the other day, half of the time with a 20 pound backpack on.

Today is always my worse day for PEM (2 days after a lot of physical activity). But I have very little to no PEM.

What I have done and am still doing, is treating mitochondrial dysfunction, dysbiosis and brain inflammation. These things have dramatically changed my life, although it didn't happen over night, it is happening!

So my message is, it is possible to significantly reverse CFS even after 30 years of disability from it and being mostly bedridden for several years. Best of all, I continue to improve!!

So how far will I be able to go? I don't really know but my goal is to continue to treat my CFS until I'm 100% healthy. Then do whatever is necessary to maintain my health.

That's wonderful, I'm so pleased for you! May I ask how did you treat your brain inflammation??

 

[jesse's mom]

@Sarah Metcalf ,
I have had a roller coaster life with this illness. I got a little sick (I thought it was awful at the time) in 2006. I sold my salon and went home to go back to college, and raise my kids. They were 12 and almost 3 at the time. In 2011 I got a high fever and horrible headache and neck stiffness. I was housebound, but was able to do household chores and had to leave school. I got the flu type A and pneumonia in 2017. It seemed I sank lower and lower into the abyss over those years.

I started getting a little better this year! Magnesium helped, then adding BCAAs and Pre and probiotics was a real turning point. I think I have the big rubber maid containers that we all seem to have of supplements that did nothing or make me feel worse!

Learning to pace has been paramount for me. I spent my life going FAST! Resting before I was tired? How do you even do that? I learned by charting my blood pressure and every bite of food, and how I felt and journaling about my feelings to learn the signals my body sends me that I am getting tired. I charted every hour or so and wrote every supplement I tried for about 6 months. Bedridden, what else is there to do?

Last month I was diagnosed with pre-diabetes and began taking Metformin. It helped me dramatically in a week! I also began supplementing with taurine. There was not really any room to clean up my diet anymore, the last holdout is the noodles I just can't give up totally! I sleep better and wake up feeling pretty good. I have moved from severe and mostly bedridden to mostly moderate in a month.

I am travelling this summer without spending an entire day in bed at the beginning and a week. after! My cat misses me a lot!

I am going to have to have neck surgery sometime soon. Not CCI but for spinal stenosis, degenerative disks and spinal cord damage. As much as I dread that and the recovery from it I am looking forward to having some good years coming up! I do have hope!

 

[sb4]

Last month I was diagnosed with pre-diabetes and began taking Metformin.

Did you previously respond to low carb diets? I have heard one of the mechanisms of action of Metformin is by inhibiting mitochondrial complex one, this is the one electrons from PDH go in. So blocking this forces use of fats.

 

[ljimbo423]

That's wonderful, I'm so pleased for you! May I ask how did you treat your brain inflammation??

Thank you!

I'm taking curcumin, resveratrol, high dose epa/dha (4.5 grams a day) from fish oil and ceylon cinnamon (3 grams a day).

I started the high dose epa/dha in October of last year and have only had one flu-like flare in the last 8 months and that only lasted one day. I use to get the flu-like flares fairly regularly before I started the high dose epa/dha.

So for me, the high dose epa/dha is very clearly the strongest neuro-anti-inflammatory I take. Having said that, I believe that toxins from my gut are causing my neuro-inflammation.

So that is my main focus, to fix my gut microbiome and stop the toxins from causing the brain inflammation.

I firmly believe that everything else I treat are symptoms (but also very important) and secondary to the toxins from my gut. Which I believe are the root of cause my CFS.

 

[jesse's mom]

Did you previously respond to low carb diets?

I have generally been low carb for a few years now. Noodles are my weakness. I am glad it is not cookies!

Metformin has been a life changer for me!

 

[sb4]

I have generally been low carb for a few years now. Noodles are my weakness. I am glad it is not cookies!

Metformin has been a life changer for me!

I was considering Metformin though I don't have diabeetus however upon reading this site some people did really poorly on it. Metformin is known to increase lactic acid so I assumed that was just pilling on to already too much lactic acid.

Could you tell me how specifically it helped you? Has it improved your carb tolerance for example?