Autoimmune Fatigue and/or Chronic Fatigue
Hi Wondering if anyone has been diagnosed with autoimmune fatigue and/or chronic fatigue? I was diagnosed at Mayo Clinic. I wish there was more research into both of these...
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Rochester Mayo does virtual medical vists. Perhaps schedulng one and sending copies of all your bloodwork can help with obtaining a diagnosis and treatment. My sense is you are suffering with some form of endocrine imbalance, perhaps adrenal. I hope you are able to find helpful answers soon, but for sure you need medical support. I know from my own experience that local small tow docs were really low in proficiency and accuracy, plus overworked, and if your issue isn't an easy one, you may never get an accurate answer or solution unless you search elsewhere.
@dixzeland The Mayo Clinic has a care network of hospitals that they work with. There is one in Texas, Methodist Health System. Here is a link: https://mayoclinic.org/about-mayo-clinic/care-network/members
If you wish to be seen at Mayo Clinic, here is the appointment link:
https://mayocl.in/1mtmR63
If you are wanting genetic information, many larger hospitals have genetic counselors. I don’t know if insurance covers, though.
What do you see as your next step in looking for help?
Has he been checked for mycotoxins from mold?
Many of the symptoms you list are classic mold illness.
How did they arrive at this diagnosis?
I was diagnosed with chronic fatigue syndrome in my 30's. Almost 40 yrs ago. My PCP diagnosed it within 2 weeks. The chairman of infectious disease at my local hospital confirmed it. I was put on antibiotics. I had to go on disability for a month. Unfortunately because nobody knew much about chronic fatigue syndrome and they thought it was all in your head. I tested positive for Lyme disease, but my doctor thought it was a false positive. Consequently I was fired from my job for going on disability.
I was running 103 fever for almost 6 months. I was extremely tired, sleeping almost 14 hrs a day and had total brain fog. I would get lost driving and I wasn't able to work for almost 6 months. My doctor put me on Prozac along with the antibiotics. I couldn't remember a phone number for a very long time. The prozac helped tremendously with the brain fog. I not a pill popper, but my doctor convinced me to take it until I was feeling better.
I went to a symposium at Robert Wood Johnson Hospital for CFIDS. There were 500 people in attendance from all over the country. There were 10 infectious disease doctors who couldn't really tell you anything. There was one Asian doctor who said he couldn't explain it but his patience were taking Echinachea and it seemed to work. After about 30 days of trying echinachea, It's a Chinese herb. I started feeling better. I cried. My mind started coming back very slowly. I could finally remember a phone number. I had to change my habits and listen to my body . When I was tired, I had to rest. I didn't fight it. Exercise and health eating is important too. I would play tennis once a week even if I pushed myself. The social aspect was important also.
I still take 2 echinachea a day and will never stop. When I don't take it for a week, I start getting tired again and fever comes back. It's almost 40 years later and still not much being done. But I'm still feeling good.
Its an awful disease but you need to be your own advocate. I belonged to CFIDS for a very long time. I learned a lot of good tips on how to survive and enjoy life.
Sorry this is long, but chronic fatigue took my life away for half my life. But I learned how to cope and have been playing tennis and pickleball for over 40 yrs.
Hope this helps. Please don't let doctors tell you its in your head. Its very real! 🙏❤️
Wow! What a story of wellness! I am going to get some Echinachea and see what happens. So glad you are doing well joe but like you said you lost a great chunk of time out of your life being ill. Thank you for sharing your story.
You don't have Chronic Fatigue or Lyme disease. You have syphilis which cross reacts with so called "Lyme disease". All syphilis serology will be negative. Given your brain fog you likely have neurosyphilis.
That was not even suggestion by either one of my specialists back then. My symptoms were nothing related to what your claiming but thanks for trying.
My doctor's treated me and diagnosed me within 2 weeks when most doctors didn't even know what chronic fatigue was back then. It went into remission and never came back in 30 yrs.
I've been an advocate all my life because of doctors making mistakes and misdiagnosing. I'll continue to do the same.
Was your P41 Flagellin band high on the Lyme immunoblot or WB?
Which antibiotics did they give you?
I wase only on one of the penicillins. It was 30 yrs ago. I was only given it because of the fever. All my blood work came back fine. I had a western block for the Lyme disease. They think it was a false positive. My antigen level was a little high, but that was it. They also thought I might have been exposed to toxins since I was exposed to paint odors. I was painting in my garage with the doors closed because of rain.
They thought it was part of the Epstein Barr Virus. Who knows what it was, I'm just glad it went into remission. I've learned to know my limit's and rest when I need to.