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…

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@peach414144

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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Peach, it is suggested that all of us autoimmune people get booster shots. I certainly will.

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@patyrod

Peach, it is suggested that all of us autoimmune people get booster shots. I certainly will.

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I thought so and I thank you patyrod for your input.

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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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So I have been reading up on these different companies and their services for testing based on your suggestions. I am not totally clear on the first part about entering symptoms & signs and on OMIM…my son's symptoms are part of what is making this all so vague…Fatigue (this can be attributed to many underlying issues, brain fog..same thing…diarrhea (nearly lifelong) …been tested up and down for all sorts, but nothing comes up. If I enter his symptoms and they are sort of "generic" as I listed above, I get quite a list of suggested issues. Any suggestions on how to approach this when it feels overwhelming? Should we just dive in and have him take a test and eel with it once it comes back with results? I sure appreciate your thoughts and ideas : )

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@peach414144

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?

Jump to this post

Hi @peach414144 You asked about getting a booster shot. The CDC recommends that all those with a compromised immune system get the 3rd shot of the same vaccine. You might want to let your doctor know, first. Stay well!

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@abrown2

So I have been reading up on these different companies and their services for testing based on your suggestions. I am not totally clear on the first part about entering symptoms & signs and on OMIM…my son's symptoms are part of what is making this all so vague…Fatigue (this can be attributed to many underlying issues, brain fog..same thing…diarrhea (nearly lifelong) …been tested up and down for all sorts, but nothing comes up. If I enter his symptoms and they are sort of "generic" as I listed above, I get quite a list of suggested issues. Any suggestions on how to approach this when it feels overwhelming? Should we just dive in and have him take a test and eel with it once it comes back with results? I sure appreciate your thoughts and ideas : )

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Glad to help. Yes, dive in and take the genetic sequencing test. I, personally, would start with Ambrygen.com, a freebee. If nothing there, go to Sequencing.com, do the $69 Analysis. Nothing there? do the whole genome sequencing, 100 %, (30x listing). Most insurances will cover this now. There are some very good clinics around now. ARUP, MD Andersen, Johns Hopkins, Dante etc. I suspect, from your description, that you are dealing with some form of epilepsy and/or Multiple Myeloma, perhaps Amyloidosis, and perhaps even Gelsolin, like mine. I could be very wrong, but only a good genetic search will help now.

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@oldkarl

Glad to help. Yes, dive in and take the genetic sequencing test. I, personally, would start with Ambrygen.com, a freebee. If nothing there, go to Sequencing.com, do the $69 Analysis. Nothing there? do the whole genome sequencing, 100 %, (30x listing). Most insurances will cover this now. There are some very good clinics around now. ARUP, MD Andersen, Johns Hopkins, Dante etc. I suspect, from your description, that you are dealing with some form of epilepsy and/or Multiple Myeloma, perhaps Amyloidosis, and perhaps even Gelsolin, like mine. I could be very wrong, but only a good genetic search will help now.

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@oldkarl Ok, thank you. He has not gotten any diagnoses as of yet & that is after seeing most specialty areas at Children's Hospital, including genetics. A few of those things have been ruled out for sure. I will pursue this further. Thanks for the suggestions : )

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@abrown2,, Just remember. Most initial genetics searches only cover less than 1% of the whole genome, so they miss most of the rare diseases. I think this is a rip-off, but it is what it is. Be sure to get the whole 100% of the genome. Not all labs offer the 100%. Those that do include Sequencing.com, Dante, and a few others. If you get less than 1.000,000 hits on your genome, you got only a partial. Mine is just under 250,000, less than 1% of the whole. For a small fee, Sequencing.com and some others will re-read your data for you.

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@becsbuddy

Hi @peach414144 You asked about getting a booster shot. The CDC recommends that all those with a compromised immune system get the 3rd shot of the same vaccine. You might want to let your doctor know, first. Stay well!

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Thank you Becky. Yes, it was my cancer doctor who gathered her patients and asked who wanted their Covid shots and then gave the shots to a different group a number of times a week for about a month. This included the second shot of which was Moderna. I and many others salute this doctor and wish her well. My last shot was in May so I will wait about eight months (I think it is) for the booster. Love to all.

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@peach414144

Thank you Becky. Yes, it was my cancer doctor who gathered her patients and asked who wanted their Covid shots and then gave the shots to a different group a number of times a week for about a month. This included the second shot of which was Moderna. I and many others salute this doctor and wish her well. My last shot was in May so I will wait about eight months (I think it is) for the booster. Love to all.

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I have been waiting for results of a covid antibody test
Called dr to see if he had gotten results He had not but i found out i had no b-cells at all which means that even after having 2 moderna shots i have NO protection.
Not sure if it makes sense to get third shot.
I have been getting rituxin infusions for 2 years to calm down my over active immune system.
I didnt know until today that i had no protection from the vaccines. Sounds scary to me.

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@siosal

I have been waiting for results of a covid antibody test
Called dr to see if he had gotten results He had not but i found out i had no b-cells at all which means that even after having 2 moderna shots i have NO protection.
Not sure if it makes sense to get third shot.
I have been getting rituxin infusions for 2 years to calm down my over active immune system.
I didnt know until today that i had no protection from the vaccines. Sounds scary to me.

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Thank you for this very important information. May I ask what medical problem does rituxin help with? Perhaps I will look into it.

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