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Autoimmune testing

Discussion in 'General Symptoms' started by outdamnspot, Jan 17, 2018.

  1. outdamnspot

    outdamnspot Senior Member

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    I feel at a dead-end lately: my symptoms keep getting worse and I have no environmental stability at home, plus the few supplements that were marginally helping have 'pooped out'. I can't afford to go back to a CFS specialist -- and they didn't offer much that helped anyway. However, one thing that I have never had ruled out is AI disease (when I asked, my very helpful GP said that "[he] thinks we've done enough testing and maybe should get a hobby"). I know of two people (a brother and a cousin) in my family who have Crohn's disease, though I'm not familiar with the rest of my family history. My bloodwork has always been okay-ish, though I did have Thyroid antibodies (in range) at one point; a family friend said, in her opinion, any antibodies = Hashi's, but I also had a scan and it was normal.

    I'm seeing a new GP next week -- a social worker spoke to another client with CFS and got the name of the GP she sees. I wanted to ask her to try and rule out anything AI-related, and was just wondering if there were any specific tests I should ask for (without scaring her away or looking like I've done 'too much research')?
     
    Learner1 and ebethc like this.
  2. hamsterman

    hamsterman Senior Member

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    I am going to speculate that you do have an AI disease. I am just kinda playing the law of averages here...... that's would be far more likely the cause than post-infection CFS. Based upon Dr. Younger's research... roughly 1/3 of CFS patients are AI triggered... and Cronh's is a biggie (along with Lupus, MS, and a few others). By the way.. I also have Crohn's, and I also have family members with Crohn's, (and a few other AI diseases)... and they have 'exertion intolerance' as well.

    Out of curiosity... can you eat popcorn? Also... are you ever woken up by emergency of 'having to do a bowel movement'?

    One way that might help determine if your CFS was AI triggered... was if you had slow onset CFS/ME... rather than sudden onset. This isn't 100% predictive... but I've heard its a good indicator.

    However... an important thing to know is that my CFS does NOT flareup when my Cronh's flares up. This is a very important distinguishment.... in fact... my cronh's has never been better... but my CFS/ME has continued to spiral down (untill the last 12 months).

    What basically happens is that those with AI diseases are far more likely to develop 'secondary AI diseases' as they get older. For example... I developed Iritis... Auto-immune chronic hives... and a few others. Basically... if your immune system is outa wack... it may start to misfire in many other way as you get older.

    So what I'm saying is... it's important to get diagnosed if you have an AI disease... (especially because some of them can be life-threatening) but... even if its cured to the point where it goes into complete remission... you will still have to deal with 'exertion intolerance' ie (CFS/ME) in the same way the others do... but you may find that it may get 'a little better' if the AI disease is properly treated... sorta like with anti-virals and post-infection CFS/ME... but not quite as much.

    A huge mistake I made was believing that I didnt have CFS/ME... because I had Cronh's... and my first G.I. doctor was no help at all in this area. It wasn't until a knowledgeable Endocrinologist set me straight on this.
     
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  3. outdamnspot

    outdamnspot Senior Member

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    @hamsterman don't recall having issues with popcorn, though it's been a while (years) since I've eaten it, and never woken up needing to urgently go to the bathroom .. if I do have an AI, I doubt it would be stomach/bowel-related, since I never get any kind of stomach pain.

    The onset of my CFS was relatively slow; it began 13 years ago and slowly got worse, though traumatic stress pushed it towards severe about 2 years ago.
     
  4. hamsterman

    hamsterman Senior Member

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    Yeah... I would say... I'm 99% sure your CFS was A.I. triggered. Having lots of A.I. disease in the family, and and the 'slow onset' makes it super-likely.

    I agree that I don't think you have Cronh's... One thing that makes this tricky... is that you can have something where you have all the secondary symptoms of an A.I. disease... but they never find out the primary disease... something like https://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

    By the way... have you ever taken prednisone for another condition?
     
  5. outdamnspot

    outdamnspot Senior Member

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    No, I bought Hydrocortisone online to try for my adrenal issues and it made me worse (more brain fog, aggression, breathing issues).
     
  6. outdamnspot

    outdamnspot Senior Member

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    Not sure how relevant this is, but I have a really smart friend with a degree in biology; it was her who suggested looking into AI diseases because I've been developing more and more white hair in my beard. I'm 32 and no one in my family really began to grey around this age; she said that premature greying can also be linked to autoimmune issues.
     
  7. hamsterman

    hamsterman Senior Member

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    Yeah... that happens to a percentage of people... and you would probably react pretty bad to prednisone as well... at least for the first time. The hormone replacement dose is pretty small compared to the dose needed to suppress the immune system.
     
  8. hamsterman

    hamsterman Senior Member

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    I don't know. I have white hair in my beard as well... but Im 46... and my brother has it as well... and he's healthy as an ox. But maybe its for specific types of AI diseases.
     
  9. outdamnspot

    outdamnspot Senior Member

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    I saw the doctor today. This is what she's testing: FBE, iron studies, B12, Vit D, TFTs, thyroid antibodies, ESR, CRP

    My friend's mom (a retired GP) said that isn't really an autoimmune screening; I asked the doctor about ANA but she said she only tests that when there's joint pain (which I don't have). Is there anything vital she's missing?
     
  10. Learner1

    Learner1 Professional Patient

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    Attached is a collection of tests for auto immune antibodies patients here have had.

    The white hairs can also be due to oxidative stress. A Genova Diagnostics NutrEval test would show levels of oxidative stress, lipid peroxide, vitamins A, C, E, alpha lipoic acid, glutathione, plant based antioxidants, and CoQ10.
     

    Attached Files:

  11. outdamnspot

    outdamnspot Senior Member

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    @Learner1 thanks, I guess I'll get these first tests done then see how I go with the results.

    By the way, has anyone heard of urinary tract issues in connection to AI diseases, or just CFS in general? Apologies for being forthcoming, but the hole of my penis has been burning continually (not just when I urinate) on and off for a few months now and it's driving me insane; I had an STI test and two doctors examine me and they said it looks normal. It hurts when I touch it, or even when it rubs against my underwear, and makes sleeping difficult.
     
  12. outdamnspot

    outdamnspot Senior Member

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    Apologies if these are hard to read but here's some old results from my GP. Does everything look pretty normal?

    Edit: woops, one came out upside down, will have to try reupload it!
     

    Attached Files:

    Last edited: Jan 23, 2018
  13. outdamnspot

    outdamnspot Senior Member

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    Just got back from seeing my regular GP. He ordered the test results the other doctor I saw did. Just wondering:

    Is it at all significant that my ESR has gone up since it was tested last year? It was at a 1; now it's at a 4. It's still in range though (0-10).

    Is it significant that I have thyroid antibodies again, even though they're in range? TPOAb are 12 (but under 35 is normal).

    The doctor said what I had wasn't a proper AI screening and has also ordered ANA, ENA, anticccp and rheumatoid factor.
     
  14. Thinktank

    Thinktank Senior Member

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    An ESR of 4 is perfectly normal. Personally i consider an ESR of 4 with ME/cfs healthier than a chronically low <1 ESR.

    Low level thyroid antibodies does not actually mean that your thyroid is affected. I know several people with high anti-TPO and no thyroid disease.
    Maybe someone else can chime in, @Helen?

    Your doctor was right, the previous screening wasn't an autoimmune screening at all.
    I'd also have asked for C3 and C4.
     
  15. outdamnspot

    outdamnspot Senior Member

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    Interesting, thanks. I was almost hoping the shift in ESR meant something, since it would just be nice to get some kind of confirmation of something wrong. I hadn't heard of C3/C4 .. my doctor can be a bit stubborn and dismissive of CFS, so get nervous about requesting specific tests.
     
  16. Helen

    Helen Senior Member

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    I agree from what I learnt from other people who made some changes in their diet and the antibodies couldn´t be measured any more. They all quit gluten that is suppposed to cause strong autoimmune reactions in some people.

    Dr. Jeffrey Dach has written some really good articles on Hashimoto´s ( the name of the disease caused by too high antibodies). I believe there is a good chance that you, @outdamnspot ,can get rid of the antibodies without developing a thyroid disease. Taking selenium and LDN seem to be a good start. Keeping track of possible thyroid symptoms and the three standard tests should also help (TSH, free T4 and free T3).

    http://jeffreydachmd.com/hashimotos-thyroiditis-and-selenium-part-one-by-jeffrey-dach-md/

    Thyroid antibodies have been decreased by amalgam removal as well.
    https://www.ncbi.nlm.nih.gov/pubmed/16804512
     
    Last edited: Jan 30, 2018
  17. outdamnspot

    outdamnspot Senior Member

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    I don't eat gluten, and am too stick to take supplements/drugs anymore (LDN made me a lot worse). To be honest, I'm less bothered by the presence of the antibodies than what they potentially signified. I have been looking into the autoimmune angle now hoping it might shed some light. I had read some doctors believe any antibodies signify Hashimoto's, which is why I was curious. I had a scan 2 years ago though and it was normal.
     
  18. Learner1

    Learner1 Professional Patient

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    There are many types of autoimmune antibodies that may cause illness. Attached is a list of antibody tests that have been done on PR patients.
     

    Attached Files:

  19. outdamnspot

    outdamnspot Senior Member

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    This might be a stupid question but could vitamins/supplements effect things like an ANA test? I take Vitamin C to help me sleep and it subjectively improves a lot of my symptoms the next day and calms down inflammation etc. I took it last night to sleep and went for the blood test today, so was just wondering.
     
  20. outdamnspot

    outdamnspot Senior Member

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    Just got back from the doctor. ANA, ENA etc. were all normal. Wasn't getting my hopes up but part of me was hoping a test would show *something*. Feeling pretty sad and hopeless.
     

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