Positive for autoimmunity

Discussion in 'Testing and Diagnosis' started by TJ_in_UT, Apr 1, 2019.

  1. TJ_in_UT

    TJ_in_UT Well-Known Member

    I'd been wondering if I didn't actually have an autoimmune condition as the root cause for my CFS. My doctor thought it was worth investigating also, and with my joint pain, I was able to get my insurance to cover a lab test panel for arthritis. I got the results back in mid-March. I was negative for arthritis, but had a positive ANA titer, homogeneous pattern at 1:320 dilution. This is quite a high result that often points to Lupus; however, two Lupus-specific tests in the panel were negative, so we're puzzled about what's going on. I'm scheduled to see a rheumatologist at the end of May, and hopefully he will be able to pin down what's going on. I had been back on the blood type diet for about a month before the blood draw, and now I'm wondering if the anti-inflammatory nature of the diet suppressed production of those auto-antibodies enough to cause a negative result. I may need to discontinue the protocol for a few days before future tests to get a clear picture of what's going on, but with this test result and the clinical picture, it seems obvious that I have significant auto-immune activity.

    I can't say I'm glad to have an auto-immune condition, but I'm excited to finally have a positive test result and some clear indication about what's going wrong with my body. Auto-immune conditions are usually with you for the rest of your life, but if we can determine what condition I have, then at least we may be able to treat it well enough for me to start living a more normal and productive life, and that gives me hope. :)
  2. oision

    oision Member

    What makes you think you have an auto immune condition and also what do you think is the antigen?
  3. TJ_in_UT

    TJ_in_UT Well-Known Member

    It feels like there is something attacking my connective tissue. For example, when I get myofascial release work done, it doesn't take long before things are stuck together again. Antinuclear antibody (ANA) is an good general indicator of autoimmunity. It attacks the nucleus of your own cells. I don't know what antigen is provoking the production of these antibodies, but lectins in food and incompletely digested proteins getting into circulation (because of leaky gut) could be factors.
  4. oision

    oision Member

    Do you get worse in relation to stress?
  5. TJ_in_UT

    TJ_in_UT Well-Known Member

  6. oision

    oision Member

    Do you have problems with things such as light sensitivity heat intolerance etc pretty much anything that stimulates the activation of the HPA axis?
  7. TJ_in_UT

    TJ_in_UT Well-Known Member

    Also yes, but more with cold than heat, as I'm slender and tend to be cold-natured.
  8. oision

    oision Member

    well I believe I have worked out the cause of my CFS and that is an autoimmune condition where the antigen is a stress hormone.

    below is a brief discussion as to why, so feel free to give it a read and tell me if this applies to your condition as well.

    Attached Files:

  9. TJ_in_UT

    TJ_in_UT Well-Known Member

    I wouldn't know. I hope that the rheumatologist can figure it out, but I'm out of my depth.
  10. ShyestofFlies

    ShyestofFlies Well-Known Member

    I realize this is a bit wordy so I bolded the important words, sorry about that!

    If you aren’t on a protocol for autoimmune medication you may be a candidate for the Avise panel. Depending on where you live you might be able to ask your rheumatologist about this panel and if see if it would be covered by insurance, etc.

    The lab is called exagen diagnostics I believe they operate out of California and the blood has to be sent to them overnight. They have a website with instructions, how you can obtain the kit to bring to your blood draw center. You may have to call some blood draw places in advance to find out who will do the draw and what the fee is.

    Not all rheums know or use the test widely, its still kind of a new thing and potentially selectively useful.

    In some discussions with autoimmune group members elsewhere we’ve noticed people who have been on typical antimalarial drugs and the like tend to get negative results from this panel. (I don’t work for the company and my panel was completely negative, but I believe this test can be useful for some people.) Those of us with negative Avise Panels just went back to relying on traditional blood work since we’re already taking Plaquenil anyway (if it was helping).

    Over the years I’ve met people whose blood has done all kinda of wonky stuff, AI are not known for being easy to diagnose and I like to think there’s a big part of artistry to the diagnosis based on clinical. Its also possible for some conditions to be diagnosed without positive blood, especially rarer autoimmune diseases or ones with recognized seronegative groups (such as RA).

    There is also the large group of patients with an autoimmune disease called Undifferentiated Connective Tissue Disease (UCTD) which can start with some blood and symptoms and may not ever take on the full diagnostic criteria of one specific autoimmune CTD, but instead frankenstein bits and pieces of multiple AI diseases. It is its own diagnosis, but some people with it eventually split into one of the other specific diseases. It may not be mentioned to you if they think your diagnosis is fairly clear and meets the full criteria for one or more autoimmune diseases.

    If you have an autoimmune disease (instead/additionally?) I hope they can work out a treatment plan which helps! Best of luck.
  11. TJ_in_UT

    TJ_in_UT Well-Known Member

    Thank you for the suggestion. I'm not on any AI protocol yet, other than dietary and nutritional supplements, but those are only marginally effective. I haven't even met the rheumatologist yet, so I don't have an opinion about his competence, but I'm inclined to just agree to whatever he wants to do at first. If the tests he orders don't turn up anything and I get the feeling that he doesn't know what to try next, I may look at some other options.