Autoimmune Fatigue and/or Chronic Fatigue

Posted by Langold @rarelybees2889, Jan 8, 2020

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...

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@dixzeland

Hello. I know this article is over a year old but I have hopes of someone reaching back out to me. I have had my illness for 13 years and have never received an actual diagnosis from the many 50+ doctors I have seen.
I am gluten intolerant, sugar alcohol intolerant, and many other foods as well. I have multiple Chemical sensitivity. Whenever I inhale perfumes, cigarette smoke, or apply lotions to my skin, including sunscreens, I become deathly sick as if I have the flu and it sends me to bed for days at a time. I become weak, disoriented, brain, fog, headaches, nausea, and sometimes muscle aches to name a few. The most at one time that I have ever stayed well is three weeks it has left me disabled and unable to work. I am still searching for answers asked to how I woke up one morning in 2009 and have never been the same again.

Jump to this post

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.

REPLY
@dixzeland

I have gone to see a few specialist at UT Southwest in Dallas but no luck getting answers. I have tried to participate in research studies but don’t qualify for various reasons. It’s insane that I know so much about the medical field and medical terminology. I have raw data through 23 and Me but can’t find anyone to interpret the information to see if I have faulty genes, something rare.

Jump to this post

@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?

REPLY
@abrown2

Hello, I am new to this...I am a parent of a 16 year old boy who has had a lifetime of GI issues nobody has been able to diagnose or help and now nearly 2 years of debilitating chronic fatigue and brain fog. He has ben seen by MANY Dr.'s at children's hospital. He has been tested for all sorts of things: thyroid, cardiac, allergies, autoimmune, Lyme's, rocky Mountain spotted fever, infections disease for something picked up while traveling internationally...you name it. Nobody has been able to figure out what is going on or how to help him.
Any ideas? We need all the help we can get?

Jump to this post

Has he been checked for mycotoxins from mold?

Many of the symptoms you list are classic mold illness.

REPLY

How did they arrive at this diagnosis?

REPLY

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! 🙏❤️

REPLY

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.

REPLY
@bfort

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! 🙏❤️

Jump to this post

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.

REPLY
@egertondavis

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.

Jump to this post

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.

REPLY
@bfort

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.

Jump to this post

Was your P41 Flagellin band high on the Lyme immunoblot or WB?
Which antibiotics did they give you?

REPLY

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.

REPLY
Please sign in or register to post a reply.