If you have these symptoms would love your input.

Yes - I have the debilitating fatigue that is one of the primary symptoms for so may of us long haulers. I can SO relate about docs knowing nothing in terms of treatment. My PCP and pulmonologist both individually diagnosed me with Long Covid but I have to constantly advocate for my own health and treatment options. I've learned a lot from listening to other long haulers and what has helped them with specific symptoms that I also have. Nothing has helped my chronic fatigue except time. For me, I think micro-clots may be one of the major contributors to my fatigue. (I have 50+ other symptoms I am battling .) I recently started taking nattokinase after hearing from some other long haulers that it helped their fatigue. It's a natural supplement which 's a blood thinner and there's also some evidence that it degrades spike protein. Fingers crossed it works for me.

It sure seems odd to be that you’ve seen so many doctors and none of them have made a diagnosis. Since you’re fatigued all the time, one of them should have run a Thyroid Panel on you. Tell your primary doctor to run a Thyroid Panel on you and ask to have your TSH, T3-free- T4-free and TPO Antibodies run. Sounds like you might be Hypothyroid and will need a medication like Synthroid or Armor (natural thyroid medication) to control it. I was extremely fatigued and was gaining weight like crazy and found out I suffer from both Hashimoto’s and Hypothyroidism. I’ve eliminated eating gluten, dairy and soy from my diet to control the Hashimoto’s and I take 75 mcg of Synthroid to control my Hypothyroidism. Talk with a doctor who will listen to you and take steps to help you feel better. Good luck and good health!

@iamawriter its a test available via Dr Bruce Patterson’s program. I don’t think it’s available any other way than through his group.

Low dose naltrexone is also working for me on the Long COVID fatigue. It, as a bonus, also drives most of the inflammation out of my body so I don't wake up in pain. You have to start at a very low dose and will usually start taking it at night as it will make you tired. In a few days, taking it at night will give you vivid dreams (not nightmares) and eventually most people will switch to taking it in the daytime as it will not longer make you tired.

You move up the dose very, very slowly until you get to 4.5 mg per day. For me, I dropped back down to 3.5 and then to 2 mg to find the best dose for me. It doses improve my energy another hour or so a day which is marvelous! And the pain relief is wonderful!

@iamawriter first test over $1,000 which I turned in for reimbursement and waiting to hear decision. Treatment regimen is lifestyle and medication. He has repurposed an AIDS drug Maraviroc and uses a Statin. Low histamine diet and avoidance of inflammation causing activities. For example, no SCUBA because compression and decompression is an inflammatory activity. Highly recommended you watch some of his YouTube interviews.

I’m always exhausted, physically, emotionally, and mentally. Searching for a doctor who deals with Long Covid — peferably in St. Pete/Tampa area. I have so many symptoms. Thanks.

sf

I also have chronic fatigue. Some days worse than others. Have you had an I-CEPT test? This stands for Invasive CardioPulmonary Exercise Test. They run a catheter to your left ventricle and then put you on an exercise bike, gradually increasing resistance and measuring your oxygen intake, oxygen saturation and several other things. My results showed two problems.
1) the blood returning to my left ventricle had a higher than expected level of oxygen. This suggested that my muscle cells--probably the mitochondria-- were not using oxygen effectively. There are several supplements such as alpha lipoic acid that should help. However, I have only seen minimal improvement but may need to keep taking longer. Also limited exercise such as walking or stationary bike for 10 .minutes 3X Day to help rebuild lost muscle may help.
2) they discovered I had "cardiac preload insufficiency" which means that with exertion not enough blood is being returned to the left ventricle to keep up with demand so you tire easily and can feel short of breath with even limited exertion. I even passed out and broke my foot. For this I am being treated with midodrine to raise my blood pressure, fluodrocortisone to increase blood volume, salt tablets, and wear compression socks.
Of course, you might not have the same I-CEPT test results so these treatments might not be appropriate.

@suefish I ultimately turned to Dr YouTube because local doctors and Mayo couldn’t/didn’t help me. There are fortunately groups of reputable Doctors and Journalists worldwide working on LC. I chose Dr Bruce Patterson and all of my appointments are virtual. You must have a local Doctor for Patterson’s team to work through. I am 6 months into his program and feeling better.

What a great idea!! There’s no one closer to me in St. Petersburg than a doc in a Tampa hospital and a good but distant university in Gainesville. Thanks so much for sharing!!

Itch Treatment: Tecnu EXTREME Posion Ivy & Oak Scrub. This works GREAT for an itch that has no obvious cause, like a skin eruption (bug bite or hives from histamine food reaction). Mix a dab with a little water and 30 seconds later - The itch is gone!