Autoimmune Disease: Do I Have It? What Are The Symptoms?

Discussion in 'Your Living Room' started by earshurt, Jan 1, 2011.

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  1. earshurt

    earshurt New Member

    Its ok we don't have to do this. Its ok. I just thought maybe somebody might say something that would give me some ideas. Maybe i'm the dull match here and probably so. I drank last night and that always bombs out my immune system so I don't feel too good right now. Thanks for trying though. I appreciate it. I really do. You guys are great.
  2. CarolineJ.

    CarolineJ. New Member

    I guess this is one of your statements that make no sense to us.

    From my vantage point if you see a doctor when you have pus coming out of your ears I don't believe they are shrugging their shoulders. I am not as experienced as the other posters here with ENT's but I can't imagine that there wasn't quite a few things that the ENT would do in that circumstance which would include taking a sample of the pus for testing, determining where the pus was coming from, etc.

    Inflammation and infection are two different things. Of course when infection is present usually inflammation would also be present especially if the infection is bad enough to produce pus. Inflammation alone does not produce pus.

    As someone has already said if you believe that turmeric is stopping the pus then you are not treating the infection if pus reappears when you stop taking the turmeric.

    Do you understand why this doesn't make sense to us? We really aren't trying to be mean to you, we are actually very nice and caring people, it's just that something does not sound right here.
  3. CGR

    CGR Guest

    Sorry youre not feeling good, EH
  4. CGR

    CGR Guest

    Im serious. I dont like to see ppl suffer.

    Thats the cherokee side. Tender hearted
  5. hollymm

    hollymm Me, 'in' a tree.

    Have you read this all at one sitting? This is some really sad stuff. Yes, I did giggle a bit but it's really unfair to take such advantage... But, if it's all in fun and no one is fighting, what the heck?? earshurt, you need to take back control of your post. WHAT ARE YOU TALKING ABOUT??
  6. Jordan

    Jordan New Member

    On a side note, goldenseal interacts negatively with many medications, including trazodone (see WebMD for more info.).
  7. bulldogs

    bulldogs New Member

    I would like to know if one truly has an aied is it possible to stop cells from turening on themselves or is te best you can possibly hope for I just slow the process down, but the end result is inevitable?

  8. June-

    June- New Member

    I don't think any scientists fully know the answer to this question. The doctors most familiar with the issue would be rheumatologists and allergists. I would work with one of them.
  9. earshurt

    earshurt New Member

    hollymm thank you for your concern. I appreciate it. I think my condition and yours have a lot in common perhaps.

    It seems the problem with this thread is that some people did not understand that when the chronic inflammation would periodically lead to an infection I went to a doctor. I was told "you have an ear infection take this antibiotic", and so I did. When I asked the doctors what the cause of the chronic inflammation was, that lead to the periodic ear infection, I got the "shoulder shrug I don't know" answer as is common with this situation.

    I assumed the fact that I did go to a doctor, get antibiotic, but still got no answers as to "cause" but only an idiopathic response (cause unknown) was apparent. Maybe not. I didn't feel too good when I started this post and I still do not feel very well, but better, a bit. Maybe I did not make that fact clear, but I am not sure how to make this fact any clearer.

    I have done some research for you on the 68kd sized antigen in your thread, as it relates to the word "bovine". In an effort not to derail your thread I will send it to you by pm if you like. I have found some information I consider interesting, and possibly pertinent to your condition.

    My intention for this thread was to start in broad fashion and then narrow down to certain specifics. I had some really good research to provide such as this one article on the basics and then I intended to get very specific. Since this thread is already ruined I do not plan to continue. When threads build to tens of pages with this sort of consternation it dissuades readers, as it also dissuades myself of any desire to continue. I will however post the basic information I had for the benefit of anyone interested, and then I plan to let this thread die.

    Thank you for your encouragement and I wish you best. I am sorry that you are suffering. I suffer in like manner as yourself and I understand your frustration.



    In 1979, McCabe first described a cohort of patients with idiopathic, rapidly progressive bilateral sensorineural hearing loss (SNHL). These patients' hearing improved after treatment with corticosteroids, thereby suggesting an autoimmune pathogenesis. The hallmark of this clinically diagnosed condition is the presence of a rapidly progressive, often fluctuating, bilateral SNHL over a period of weeks to months. The progression of hearing loss is too rapid to be diagnostic for presbycusis and too slow to conclude a diagnosis of sudden SNHL. Vestibular symptoms, such as true vertigo, generalized imbalance, and ataxia, may be present.



    The term autoimmune inner ear disease (AIED) implies a direct attack of the immune system upon an endogenous inner ear antigen. Most of the evidence linking the immune system to cochleovestibular dysfunction is indirect; therefore, immune-mediated inner ear disease may be a preferred term. AIED is a clinical diagnosis based on its distinct clinical course, immune test results, and treatment response. The most important diagnostic finding is improvement in hearing observed with a trial of immunosuppressants.

    Specific criteria for idiopathic progressive bilateral sensorineural hearing loss (IPBSNHL) include bilateral SNHL of at least 30 dB at any frequency with progression in at least one ear, defined as a threshold shift that is greater than 15 dB at any frequency or 10 dB at 2 or more consecutive frequencies or a significant change in discrimination score. This definition excludes patients with sudden SNHL occurring in less than 24 hours, which more likely is due to a microvascular or viral etiology.

    A certain subset of patients with presumed Ménière disease (idiopathic endolymphatic hydrops) actually may have Ménière syndrome, in which the underlying pathophysiology is immune mediated. Typically, Ménière disease is initially diagnosed in these patients; however, fluctuating hearing loss in the contralateral ear develops later. This change may prompt a workup for AIED. Hughes et al found that approximately one half of their patients with AIED have manifestations of autoimmune Ménière syndrome.1


    United States

    Because the existence of autoimmune inner ear disease (AIED) has been recognized only since 1979, incidence is difficult to determine. Recent studies in the literature from large referral centers are based on relatively small sample sizes of patients who fit the criteria for diagnosis of AIED. As diagnostic tests for the condition become more specific and more is known about AIED, more patients will be identified who have an autoimmune basis for inner ear symptoms.


    The condition has been suggested to be more common in female patients who may or may not have concomitant systemic autoimmune disease than in male patients.


    In most patients, initial onset of symptoms occurs at age 20-50 years. Cases in pediatric patients are uncommon.



    Hearing loss: The hallmark of immune-mediated inner ear disease is sensorineural hearing loss (SNHL), which usually is bilateral and occurs rapidly over weeks to months.
    Fluctuation: Sensorineural loss can fluctuate and stabilize at a certain level, or it can progress without fluctuation.
    Laterality: Bilateral hearing loss occurs in most patients (79%). Occasionally, only one ear is involved initially, with the contralateral ear developing hearing loss later. In bilateral cases, audiometric thresholds can be symmetric or asymmetric.
    Speech discrimination scores: Discrimination scores often are poor in immune-mediated inner ear disease. Therefore, in cases of unilateral or bilateral-asymmetric disease, include diagnostic imaging and serologic studies in the workup to exclude retrocochlear disease and syphilitic inner ear disease.
    Vestibular symptoms: Approximately 50% of patients complain of vestibular symptoms typical of Ménière disease. Vestibular symptoms can include disequilibrium, ataxia, motion intolerance, positional vertigo, and episodic vertigo.
    Tinnitus and aural fullness: As many as 25-50% of patients also have symptoms of tinnitus and aural fullness, which can fluctuate in severity.

    Systemic autoimmune disease: Coexisting systemic autoimmune disease occurs in 15-30% of patients. Diagnoses include rheumatoid arthritis, ulcerative colitis, systemic lupus erythematosus, and polyarteritis nodosa.


    Findings from physical examination of the ear usually are normal in patients with immune-mediated inner ear disease. Occasionally, associated systemic autoimmune diseases can affect the external ear skin or middle ear mucosa.


    Association with type I immune reaction involving immunoglobulin E (IgE)–mediated response
    Solimon postulated that histamine-induced vasodilation of endolymphatic sac vasculature may result in endolymphatic hydrops because of impaired fluid transport.
    A large percentage of patients treated with immunotherapy for inhalant allergies demonstrated improvement in vertigo and other symptoms of Ménière disease, which suggests an association between IgE-mediated disease and inner ear dysfunction.

    Production of autoantibodies to inner ear antigen

    Yoo et al reported that rodents injected with type II collagen developed new-onset SNHL and pathologic cochlear changes that appear to be immune mediated.2
    Harris and Sharp used Western-blot analysis to identify a 68-kd antibody present in the serum of 35% of their patients with idiopathic progressive SNHL. This antibody targeted a bovine inner ear antigen, suggesting an autoimmune basis for hearing loss.3

    Production of immune complexes

    In a series of 30 patients with Ménière disease, 96% had elevated levels of circulating immune complexes compared with 20% of control subjects.
    Patients with systemic lupus erythematosus have evidence of circulating immune complexes and multiple autoantibodies. Reports exist of SNHL associated with systemic lupus erythematosus. Likewise, reports of patients with Wegener granulomatosis cite SNHL in association with vasculitis of the cochlear and endolymphatic sac arteries.


    If you noticed I bolded something above.

    The condition has been suggested to be more common in female patients who may or may not have concomitant systemic autoimmune disease than in male patients.

    I have some theories as to where this comes from and what causes it. This is why I started this thread with a very broad brush and then I intended to narrow down very specifically.
  10. June-

    June- New Member

    EH, do you have a point you want to make?
  11. earshurt

    earshurt New Member

    I did June, but this thread is already ruined so I intend to let it die.
  12. mrdizzy

    mrdizzy New Member

    this sounds dangerously close to a debate!
  13. earshurt

    earshurt New Member

    From the article above this was point. This is why I started so broad. I intended to show some links I have found as it relates to this situation. Situation being "autoimmune dysfunction" in general, and then as it relates to inner ear disorder.

    As I stated, this thread is ruined. Anyone else is welcome to continue but I would rather not.


    The condition has been suggested to be more common in female patients who may or may not have concomitant systemic autoimmune disease than in male patients.

    This alludes to an overall systemic autoimmune problem, that then manifests itself in the inner ear. This is why I started the thread as titled "autoimmune disease" in broad fashion. I have some good research as to where this basic systemic autoimmune dysfunction that then manifests in the ear may come from.

    This was the thread intention from the beginning. But the thread is ruined now so I will not continue.

    I have some theories as to where this comes from and what causes it. This is why I started this thread with a very broad brush and then I intended to narrow down very specifically.
  14. CarolineJ.

    CarolineJ. New Member


    Why don't you post that information on Holly's original Auto-immune thread as it is interesting and on topic and instead of just giving us your theory on what it means let others read it who may have some experience with it and also give their input?

    Groovemastergreg as well as others has posted some excellent information on that thread that may be of interest to you. Have you read it yet? He reports the theories of 3 doctors who specialize in this problem and these theories are based on a lot of experience and seeing real patients and may or may not agree with your theory. He also posts his history from the beginning to present day and how the diagnostic process played out.

    Holly's thread is an excellent thread on this topic and I think you may learn something from it.

    Glad you are feeling a little better today, I am too.

    Here is the link to the other auto-immune thread:,30504.0.html
  15. June-

    June- New Member

    I guess I was too dumb to get the point. It has to be pretty plain spoken for me to follow people.
  16. bulldogs

    bulldogs New Member

    EH: if you kill it save the cool pictures for another thread.
  17. CarolineJ.

    CarolineJ. New Member

    In future it would probably be a good idea to remember these suggestions:

    1 - If there is already an active thread on the topic you want to start which has various contributors who know of what they speak then join that one instead of starting your own.

    2 - When starting a thread put relevant information in your first post instead of luring people in asking for advice/opinions when you already have a theory and plan of how the thread is going to play out. You never know how a thread will play out here, you have no control over it and if people start to think you are playing with them then it won't go well.

    3 - realize that other people have experiences with these things and just going forth with your agenda without leaving room for anyone else to provide factual information will not work. It is a very bright and diverse group here so embrace that and try to work within that.
  18. Taximom5

    Taximom5 New Member

    You have an enormous amount of knowledge to offer here on this forum, but I really think this MO is your downfall.

    If you have a specific theory, state it as simply as possibly, and back it up with a few well-chosen sentences from the supporting studies.

    When you start with "a very broad brush," you are not getting to your point right away, the thread goes off on all sorts of diversions and tangents, and by the time you actually get to your point, you have already posted so much information (much of it unnecessary) that you've totally lost about 80% of your readers. And if the whole time, you were planning on "narrowing it down very specifically," well, that just makes everyone feel like you were trying to pull one over on them. If you know what point you want to make (and you DO make some excellent ones), please make it without going through all this rigamarole first!

    We don't need to read the ENTIRE study for every point you make before we even get to your point. It would be so much more effective if you would post the conclusion of the study (1 paragraph or less), a link to the study (so we CAN read the entire study, when it's convenient for us to do so), and your point.
  19. earshurt

    earshurt New Member

    Caroline thank you for your concern as to my well being. We all suffer. We have good days and bad days. Thank goodness we are not all crazy on the same day huh!

    A "lure" was not my intention. I had already bluntly stated, in the first sentence of the original post, that I sought opinion from others who may be more knowledgeable than myself. So I guess in fact that may be a "lure", a lure and invitation for others who are knowledgeable to participate.

    The problem that I created for myself in this forum was revealing my past pharma employment and my disdain for some of the practices in the industry. This of course has bred some loyal detractors. I changed my sig line as a peace offering, but it still reflects my philosophy of a cure for us all instead of a life of treating symptoms. I am a product of my environmental training, but I regret showing my disdain of the industry I was formerly employed by. It was a huge mistake.

    I specifically invited input. Maybe that is a "lure", but I really didn't see it as such. However, as I said, I consider this threat tainted and I don't think it wise to continue.

    I think it would be better to let this one die. And now I will.
  20. earshurt

    earshurt New Member

    Point well taken and agreed upon.

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