A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Holy crap -- IgM deficiency

Discussion in 'Immunological' started by SOC, Oct 10, 2013.

  1. pemone

    pemone Senior Member

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    SOC, I have the same test result: Selective IgM Deficiency. Do you understand how rare this condition is? There are fewer than 300 cases in the literature. We are freaks. :)

    What symptoms do you have, and has any doctor connector those to the IgM?

    Have you seen an immunologist to get a more thorough investigation about possible causes for the IgM Deficiency?
     
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  2. SOC

    SOC Senior Member

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    Yup, we're freaks alright. :hug: As I understand it, they can't even figure out how it's possible to have Selective IgM Deficiency, although they're willing to admit it exists since they can test for it.

    I have ME/CFS, of course, which could be connected to SIgMD. I have the multiple infections and reactivations common in ME/CFS. They could be related to the Selective IgM Deficiency.

    My ME/CFS doc is an immunologist. Last time I talked to her about the SIgMD she said there's nothing direct they can do about it. Current practice is to use abx, antivirals, and antifungals to treat opportunistic infections as they arise.

    Sucks to have a rare disorder, doesn't it? Nobody bothers to do much research or develop treatments.
     
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  3. pemone

    pemone Senior Member

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    Do you have high LDL cholesterol? This study bothers me:

    http://circ.ahajournals.org/content/120/5/417.abstract

    Low IgM correlates to development of arterial plaques and heart disease.

    What's quite interesting is that a low related element C1q in theory slows down aging process:

    http://rt.com/news/japan-scientists-stop-ageing-461/

    Unfortunately, in the tests Japanese scientists did, low C1q made the animals susceptible to infections. So they age slowly but are susceptible to disease. Do you look young for your age? I do.
     
  4. maryb

    maryb iherb code TAK122

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    @surethom
    the only way I got a print out with the ranges on from my surgery was by saying I wanted a copy for a hospital visit I had last year. Otherwise you could just ask the GP outright if you could have a complete copy.

    Its just another example of treating the patients like dumbos, aka NHS policy... we can't possibly have all the facts we may question them. I mean its not as if they could interpret the results without the ranges on.
    morons the lot of them.
     
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  5. PhotosByPflanz

    PhotosByPflanz

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    I am afraid that I am coming to this forum a bit late, but I just stumbled across it. I have Selective IGM Deficiency and have been living with it for about 10 years. As you have all noticed, there is not much research done because it is so rare. I have gone through a few different treatment options and so far it has been a roller coaster ride. The low-dose daily antibiotic worked fine for about a year. My body got used to it so we switched antibiotics, but that did not work. It also left me vulnerable because my body was used to it and when I did get a sinus infection, on antibiotics it got progressively worse and ended up as a upper respiratory infection. Even on two different antibiotics, an inhaler, and steroid, it progressed into pneumonia and I ended up in the hospital for a few days.

    I was blacking out when I coughed and found out that my blood pressure medication (beta blocker) was causing bronchial spasms which robbed me of oxygen. After several IV bags of antibiotics, and a change in BP medicine, I got out of the hospital. Recovery took me about 6 weeks to get back to normal. After that I started playing with vitamins. Even on 1000 i.u. daily vitamin D, my blood test showed low D levels.

    I played around for the next year or so and was sick once a month where I needed antibiotics, sometimes 2 or 3 rounds to kill an infection. I bumped the D to 15,000 i.u. and added E, C, and B12 in normal doses. Since then I have been sick to the point of needing antibiotics about once every 5 or 6 months!!

    I have an 8 and 11 year old in school so I get everything brought home. I still get the colds and other bugs floating around, and I still need bacitracin for any cuts to prevent infection, but since doing the vitamins every morning I have been much healthier. Talk with your doctors, but I recommend experimenting with vitamins until you find a balance that works for you.

    The reason I tried experimenting is that my mother has Parkinson's Disease. Average life span is 7 years. She has been living with it for 18 years. She takes vitamins and eats foods rich in antioxidants. This she has done on her own as doctors want to give a pill to stop the tremors, but that makes you lethargic and that is the worst thing for your muscles.

    Find what works for you, but never give up, and never believe that every doctor has the answer. So do, some don't.

    I hope this helps someone.

    Best regards,

    Brian
     
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  6. PhotosByPflanz

    PhotosByPflanz

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    P.S. My IGM level was at 8
     
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  7. pemone

    pemone Senior Member

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    I have low IgM and find I have no propensity for infections at all. The telltale sign for me is that when I do get an infection, I feel like I recover quickly, but in fact that is a false signal, and when IgA kicks in 10 days later I get hit bad. IgM is the initial responder to infection and when you have this condition your initial response is too weak.

    What is the source of your infections? Maybe the hospital environment itself is subjecting you to these? Taking low dose antibiotic 24x7 is certainly going to screw up anyone. It will kill valuable gut flora, make organisms in you resistant to antibiotics, and in general make you feel lousy.
     
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