Extreme fatigue and exhaustion

Same age here. Liver transplant survivor of 19 yrs. Also have non-CF bronchiectasis (progressive lung disease), and now long COVID since late 2021, Delta version of Covid, my second case. I have exhaustion almost all the time,brain fog, memory problems, a blood clot caused ischemic in my large colon in Aug 2022, they thought I had colon cancer, transferred my to my transplant center 400 miles away by private ambulance. Starting in Nov 2022, I had vertigo(dizziness) and nause very bad for 10 wks.
Now I’ve learned by constant research that LC causes the mitochondria in muscle cells to be damaged or destroyed. Mitochondria is where the energy for our muscles is made. They discovered this by doing biopsies of muscle cells. Then they found same thing in other diseases like Long Lyme, Chronic Fatigue, ME, etc.,
So then I researched what I could do for damaged/destroyed mitochondria and found quite a few supplements, in large doses may help., Ubiquinol, NAC, ALA, D-Ribose, Creatine, etc etc. so that’s what I’m trying now.

I had one of the doctors I was using say the same. Quit thinking about Covid, quit reading, quit watching anything. She said none of what I was experiencing had anything to do with Covid. This was a doctor which was noted on her information to focus on Covid issues and had reference to FLCCC.

This was near the worst experience I had with the 12 amd counting doctors I have seen.

I had a severe case of Covid some weeks prior.

Within a couple weeks I was diagnosed with three pulmonary ebolisms, one deep vein clot groin to ankle, and four shallow vein clots. A few months later I was diagnosed with Covid Viral Reactive Arthritis.

Doctors......
My Covid related experiences have been many and difficult. The experiences with most of the doctos (90%) have not been good or were very bad. The immunologist and hematologist were in the top most pitiful doctors I have experienced. These were both recognized with authority by their positions. The rest were pretty poor and a few were middle, neither helping or causing issues. I have two doctors listen and make a difference.

Jt

First of all, thank you for your recommendation. I really did not think these places acceptem Medicaid. My daughter cannot work, so she does not have good insurance and we've had a heck of a time trying to just get into regular doctors and didn't think a medical university would even consider seeing her with Medicaid. But it is worth a shot. Right now we are dealing with trying to her torn hip ligament fixed as she fell due to lack of breath due to covid and tore her hip labrum and had 4 bulging discs as a result. PT has NOT helped, so the doctor wants her to go to a pain management place to get some cortisone shots to calm the area does (SI joint) because since he cannot even maneuver her hip the way he wants, he is reluctant to do the surgery to fix the tear. The responses from some of these doctors are so disturbing I cannot adequately express. And Medicaid will not take the ortho's recommendation (strangely enough since he's the one treating her) and wants her to get into a GP for the recommendation. That appointment is weeks away. If she gets that recommendation, then who knows how long until she gets into the pain clinic. In the meantime, she is in constant pain (no position relieves it). The ligament is not only torn, but "frayed," so will not heal without surgery.

Regarding your experience with doctors: I feel terrible for you. I am so very sorry you and others have to deal with this in the midst of being so ill! We went through such similar experiences years ago when we were seeking treatment for our daughter's brain injury. Because it did not fit in a casebook scenario, doctors didn't want to believe her symptoms. That only had her more reluctant to express how badly she was feeling, so I had to "fill in the blanks," and later read notes written by doctors indicating that I was a helicopter mom, and that she was an "only child" which made it worse. She was a teenager; of course a parent would advocate for her. And what does an only child have to do with it - as if to suggest it wouldn't be much of a concern if there were other children! The responses we had were from places like the Cleveland Clinic (when after a 3 day assessment the neurologist's big diagnosis was "you know, there are different colored cows." WHAT the heck does that mean?! Translation: their arrogance is so great they can't admit they don't know. She he sent us home, telling us to get her into psychotherapy. So I really emphasize with what you, and others Im sure, have/are experiencing. So we find that we can only try to help one another . God bless everyone on this board. Heart and hugs to all. Thank you for your response.

Hello I have had all of the above, still do. It has been for over 3 years now. Johns Hopkins has an excellent Long COVID clinic. You need to be referred. I strongly encourage you to see about this. The form is on their website and your daughter's Primary Care Physician can refer her. I am currently a patient with them. I am so grateful. It has had a huge impact on my mental well being. My body is another story, but I understand why and what is happening and have coping skills, I work with a specialized Physical Therapist, and I have medication. I hate taking medicine but it is necessary and my quality of life plummets to fully bedridden without it. I would encourage your daughter to pace herself with exercise. I have been told to limit activity to 20 minutes an hour, sometimes I can do 20 minutes and sometimes I can't. Long COVID is attacking my autonomic nervous system, I have neuropathy with CRPS in my foot, leg, back and neck and head, gastroparesis, POTS, etc. I am learning to live with this and find the good in life in this new very altered state of living. I wish you and your daughter good luck. She is lucky to have you.

I think your bet bet is to go to some medical university-affiliated doctors, they accept a Medicare and Medicaid, and are more up-to-date with newest treatments and more open to LC being real. My former internist told me he didn’t believe in it or any other similar stuff, thought it was all in people’s head. I switched.

Same age here. Liver transplant survivor of 19 yrs. Also have non-CF bronchiectasis (progressive lung disease), and now long COVID since late 2021, Delta version of Covid, my second case. I have exhaustion almost all the time,brain fog, memory problems, a blood clot caused ischemic in my large colon in Aug 2022, they thought I had colon cancer, transferred my to my transplant center 400 miles away by private ambulance. Starting in Nov 2022, I had vertigo(dizziness) and nause very bad for 10 wks.
Now I’ve learned by constant research that LC causes the mitochondria in muscle cells to be damaged or destroyed. Mitochondria is where the energy for our muscles is made. They discovered this by doing biopsies of muscle cells. Then they found same thing in other diseases like Long Lyme, Chronic Fatigue, ME, etc.,
So then I researched what I could do for damaged/destroyed mitochondria and found quite a few supplements, in large doses may help., Ubiquinol, NAC, ALA, D-Ribose, Creatine, etc etc. so that’s what I’m trying now.

Yes…mitochondria is the latest focus of the research. And looks promising. I take all the supplements but actually need to know the effective dosages. Get out of our way Big Pharma!!
Supplements have been heaven sent for many of us.

Sorry for your daughter....I can relate to the fatique and shortness of breath.
I wish i had some answers but i am in the same situation.
Just know you guys are not alone and day by day is all you can do.
Hopefully some research and better resources come along the farther we go along
with this.