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 group.

@marye2

Also, try a non-processed diet, more homecooking. I don't do the AIP diet, or Dr Terry Wahl's, but there are some good recipes to get started. Avoid sugar, aspartame, high fructose corn syrup.

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So right on… no processed foods only organic & “Pure” filtered water..

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@johnbishop

Hello @dianegerrodette, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thanks for sharing that tip. It is an often overlooked cause of chronic fatigue syndrome and multiple chemical sensitivity. Here is an older article from 2007 on the topic.

Functioning in individuals with chronic fatigue syndrome: increased impairment with co-occurring multiple chemical sensitivity and fibromyalgia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1890280/

Are you able to share a little more about your diagnosis and how you discovered the cause?

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My son has not gotten an "official" diagnoses or treatment plan. He has been tested by loads of departments at children's, but nobody has yet to offer a name for this or how to help. His tests generally look "normal," We are still looking for a trigger cause. Lots of questions and looking at possible pieces to the puzzle, but nothing stands out. Had our house tested twice. It was suspected to be mold related, and yet, no mold in house. He could have been exposed at say, summer camp and reacted, but there are just no real direct patterns.

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@abrown2

My son has not gotten an "official" diagnoses or treatment plan. He has been tested by loads of departments at children's, but nobody has yet to offer a name for this or how to help. His tests generally look "normal," We are still looking for a trigger cause. Lots of questions and looking at possible pieces to the puzzle, but nothing stands out. Had our house tested twice. It was suspected to be mold related, and yet, no mold in house. He could have been exposed at say, summer camp and reacted, but there are just no real direct patterns.

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This must be so difficult for your son @abrown2 . It sounds like it could be an autoimmune disease—they are so difficult to diagnose. I just spent the weekend with my niece who said that it took 20 years to get a diagnosis of narcolepsy. She was always tired, took multiple naps, fell asleep constantly. She said that 2 years ago she found a wonderful doctor who now manages everything. You just have to keep pushing.
I added a link to the AARDA newsletter which talked about getting a proper diagnosis. I’ll also ask members @tlgold and @goodfriends if they have anything to suggest.
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/
Have you tried going to a university teaching hospital or large medical center?

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Thank you..all of that was very interesting and helpful to read. Besides seeing about every specialty area at WI children's Hospital his case has been a part of what they call the Nelsen Group…it is a collaborative team from children's and the medical college that get together and discuss weird cases nobody can figure out. From those meetings, we have gotten a few tests to try, but nothing else. I am now pursuing Boston, Dallas, Mayo, and Philadelphia. Hopefully there is someone out there who can help : )

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@marye2

Also, try a non-processed diet, more homecooking. I don't do the AIP diet, or Dr Terry Wahl's, but there are some good recipes to get started. Avoid sugar, aspartame, high fructose corn syrup.

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thank you. trust me, we have been on the GI questions for most of his life. the fatigue is "new" with nearly 2 years so far. he has been on a variety of special diets, eats healthy and I have always made everything at home. No patterns or positive results from any of it. Medical mystery kid.

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@abrown2, you don't say whether you have had a good genetic analysis done, especially a whole genome sequencing. This is really the place to go next, I believe. And the prices have dropped dramatically in the last year or so. And you can actually start nearly free with Ambrygen.com or some others. If they can produce nothing that fits, you can move up to the 60-70 dollar range for a 1% sequencing. About the highest you can go now is about $600-800 for a whole genome sequencing at sequencing.com or Dante or others, with analysis. And most insurances will now cover the cost. Anytime the doc says he or she does not know, it is time for the genetics whizzes to go to work. And you don't need to travel to some center, at this point. I am an old man now, but at least I know what I have that is killing me slowly so I can save thousands I would waste on docs and meds and therapists. I have about 250,000 references in my 1% genome, and about 300 of them are pathogenic or likely, a bunch are risky, a few hundred trigger bad responses from medications such as statins, nsaids, etc. Many are just quiet, not doing any damage yet. And most are just quietly doing their good stuff, such as the ones that make me smarter than the average bear. At least that is what I tell my 17 great-grandchildren.

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@oldkarl

@abrown2, you don't say whether you have had a good genetic analysis done, especially a whole genome sequencing. This is really the place to go next, I believe. And the prices have dropped dramatically in the last year or so. And you can actually start nearly free with Ambrygen.com or some others. If they can produce nothing that fits, you can move up to the 60-70 dollar range for a 1% sequencing. About the highest you can go now is about $600-800 for a whole genome sequencing at sequencing.com or Dante or others, with analysis. And most insurances will now cover the cost. Anytime the doc says he or she does not know, it is time for the genetics whizzes to go to work. And you don't need to travel to some center, at this point. I am an old man now, but at least I know what I have that is killing me slowly so I can save thousands I would waste on docs and meds and therapists. I have about 250,000 references in my 1% genome, and about 300 of them are pathogenic or likely, a bunch are risky, a few hundred trigger bad responses from medications such as statins, nsaids, etc. Many are just quiet, not doing any damage yet. And most are just quietly doing their good stuff, such as the ones that make me smarter than the average bear. At least that is what I tell my 17 great-grandchildren.

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well that is interesting. My son had an $800 genetic test run checking for something specific when he was seen by a integrative health Dr. suspecting CIRS or a mold related issue. The test did not lead anywhere and we were still left with nothing. My son has been evaluated by a very thorough geneticist at children's hospital here. He felt there was no real need to test since he did not have anything to really look for specifically. I get it and I don't. it is like have a blood draw…they are looking for what they are looking for, rather than a bunch of things magically jumping out to them as clues. When we started all this, I thought that is more how it might work..my son would be tested and they would just see something outstanding on the lab results. That is not how it really seems to work, however.

I am curious what might be revealed by doing one of the genetic tests you suggested? If we have my son take one, would one of his Dr.s be able to see possible outstanding issues or causes for symptoms?

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@abrown2

well that is interesting. My son had an $800 genetic test run checking for something specific when he was seen by a integrative health Dr. suspecting CIRS or a mold related issue. The test did not lead anywhere and we were still left with nothing. My son has been evaluated by a very thorough geneticist at children's hospital here. He felt there was no real need to test since he did not have anything to really look for specifically. I get it and I don't. it is like have a blood draw…they are looking for what they are looking for, rather than a bunch of things magically jumping out to them as clues. When we started all this, I thought that is more how it might work..my son would be tested and they would just see something outstanding on the lab results. That is not how it really seems to work, however.

I am curious what might be revealed by doing one of the genetic tests you suggested? If we have my son take one, would one of his Dr.s be able to see possible outstanding issues or causes for symptoms?

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Hi, @abrown. Start with the symptoms, signs, etc. Take them to http://www.omim.org/entry/…….enter whatever you have. Let OMIM see if they can find anything related to whatever you enter. Then take that number or name or whatever you get to http://www.hpo.jax.org and just follow wherever it goes. And do get the full list of genes, and let sequencing.com do their magic, looking for pathogenic or risk or whatever genes or proteins which may be causing the issues your son his. Let their Genome Explorer sort out whatever conditions you are talking about. True, you might not hit on something important, but you might hit the key. I surely have. You have to let the software narrow it down, then compare that to the clinical symptoms.

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@oldkarl

Hi, @abrown. Start with the symptoms, signs, etc. Take them to http://www.omim.org/entry/…….enter whatever you have. Let OMIM see if they can find anything related to whatever you enter. Then take that number or name or whatever you get to http://www.hpo.jax.org and just follow wherever it goes. And do get the full list of genes, and let sequencing.com do their magic, looking for pathogenic or risk or whatever genes or proteins which may be causing the issues your son his. Let their Genome Explorer sort out whatever conditions you are talking about. True, you might not hit on something important, but you might hit the key. I surely have. You have to let the software narrow it down, then compare that to the clinical symptoms.

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wow! that is quite a process. How on earth did you figure that one out? Ok, this is very exciting. I will definitely pursue this. thank you so much for your advice. : )

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@abrown2

thank you. trust me, we have been on the GI questions for most of his life. the fatigue is "new" with nearly 2 years so far. he has been on a variety of special diets, eats healthy and I have always made everything at home. No patterns or positive results from any of it. Medical mystery kid.

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I try everything but as I age (84) the fatigue worsens; except hydroxychloriquine still does help. What I would really like to know is I have 3 autoimmune diseases so should I have a booster shot for this covid virus?

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