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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Pain, insomnia and suicidal thoughts

Discussion in 'Pain and Inflammation' started by Misfit Toy, Sep 9, 2013.

  1. Misfit Toy

    Misfit Toy Senior Member

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    Thanks Lou. I appreciate that. I hope you get some resolve...all of us need resolve!

    Peggy-Sue, I don't know why people want "mini me's." I was actually considering writing a blog about how wrong it is to have a child in your 40's. It's not fair to the child. Unless you are Halle Berry and are loaded. Everyone is doing it. Having kids late in life. It's one thing if the child has siblings that are around the same age. That makes sense. But, if you are 40, just got married and decided to push out a kid just because you want a kid...think about the kid. I grew up basically an only child. Let me tell you, it was not a lot of fun and I have never had an easy time being around a lot of people. I like space, I like being alone because of having had to be alone and it's harder to relate to others when you have parents that are older and doting on you as a child. I was always super sensitive.

    I have so many friends that have kids when they are in their 40's. Like 2 years old and I think....really? Do you think your kid is going to love it when you get sick in another 20 years and leave them possibly?? And, the child will be in their early 20's. Since I was 17, my Dad died and then my mom became an alcoholic so I basically took care of my mom when I was in my 20's. Plus, I love her dearly, but she needed me too much and yet was pissed that I was sick. Then she had a major heart attack and when I was 28, I had to move home to take care of her because she had triple bypass and I still take care of her. I am the only one who does. It's a weight. And while I have been sick. She has COPD, emphysema, an aneurysm. UGH. My siblings expected it because I was still single and they were married with kids. And, when she dies, I will be the one cleaning out her place and dealing with the estate. Sad. Sad to think about. I will miss her terribly, but I sometimes wonder if I will feel relief which I feel horrible saying. Now, with my limited energy, I have to be her memory because she can't keep anything straight. It's EXHAUSTING.

    I actually said to my mom recently, "I would never do what you did. I would never have a child in my 40's. It's totally not fair to the child." On her and my father's behalf, she really didn't mean to get pregnant. I was an "oops."
     
  2. vamah

    vamah Senior Member

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    Its interesting that you have that point of view, as a child of older parents. I has my first children (twins) in my early twenties and felt nothing but judgement because I was " too young". I live in an area where the idea of having kids before you are 30 is unheard of. But I had the energy to keep up with 2 babies at that age and watched them graduate from high school when I was 41. I feel confident I will still be around to help them when/if they have children of their own. I do know a lot of older parents who are great parents, so I think your experience has made you generalize more than you should. But I understand where you are coming from.
     
  3. Misfit Toy

    Misfit Toy Senior Member

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    vamah, I understand how you feel. I think people are the sum of all parts. We feel what we feel because of what we have been through. For many, my feelings are probably wrong. I understand that. It's my experience and I know many people who have much older parents that feel the same way. One friend purposely had kids young to avoid what her parents had done by having her at age 44.

    I guess it really comes down to what is right for the person. For me, I know I would never have children at an older age because of what happened to me.
     
  4. xchocoholic

    xchocoholic Senior Member

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    hi misfit toy,

    hope you're feeling better. I kept meaning to post that it takes time for our
    bodies to recover from gluten damage. Dr hadjivassilou tells his gluten
    ataxia patients to expect it to take them a year to recover if they're going to.

    I'd say it took me 2 years to feel human aka pre cfs healthy. I only feel this way
    if I've been supine for awhile and I'm well nourished tho. My oi and hypoglycemia are
    keeping me from being functional. hth. x
     
  5. Misfit Toy

    Misfit Toy Senior Member

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    xchocoholic, thank you. Yeah, I think for me it's more than Celiac. I don't know anyone with Celiac that is as sick as I am. I was a like a mystery to them when they met me. They were all able to work, not in pain like me, etc.
     
  6. dannybex

    dannybex Senior Member

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    I got some gut test results back a few days ago and also had very low IgA. Doc said it can be related to heavy metals (which I've been dealing with), but also suggests that at least there's no leaky gut issues and no major food intolerances. So...kind of weird...kind of the opposite of what your doc is saying.

    As for pain and especially sleep, I know this will sound INSANE, but have you tried increasing simple carbohydrates, especially in the evening, and cutting back on protein? It sounds bizarre, but carbs will calm down the adrenals (and too much protein will do the opposite) so...it might help a bit. It's helped me with both pain and sleep.

    I'm not sure when you got the celiac diagnosis, but I would say that's a huge positive. By cutting out all gluten grains (which, yes, is a hassle, but doable) your gut should heal quite a bit, and you may be feeling considerably better sooner than you think.

    And I know this is easier said than done, but try not to be so hard on yourself. I wrote the book on that, always comparing my sick self to other healthy peeps, and beating myself up -- or them -- about the situation. It does neither any good...we can't do anything about the past, it's history. Please try and concentrate on today, and tomorrow, and you'll get through this...
     
    Misfit Toy and merylg like this.
  7. xchocoholic

    xchocoholic Senior Member

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    imho, That's because you met the ones who can make it to meetings. Over time, you'll
    see those who only show up when they're feeling up to it. I met at least 3 who
    were as sick as me or sicker.

    It's human nature to downplay our health problems when in a social
    setting too. One on one you may get a better feel for how everyone
    is doing.

    There are the annoyingly healthy celiacs tho. lol. Elizabeth Hasselbeck comes to mind.
     
    Misfit Toy likes this.
  8. Misfit Toy

    Misfit Toy Senior Member

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    @xhocoholic, I think I am following the gluten free diet as best I can. I have to admit, sometimes I do eat things that say, made in a place that has wheat. I find it so hard to completely be religious about it, but so far, I have not had any wheat or gluten since the diagnosis. No more stomach pain lately. So, that's a positive. Yes, so far, everyone I have met doesn't have the food allergies, pain or diagnosis like we have of CFS. They had straight up Celiac and actually, no one even has issues with lactose or milk. To me, my milk allergy is so severe it even beats gluten as far as how utterly sick I get.

    dannybex, if you look up low IgG, you will see how it causes food allergies or intolerances. Your doc is off in that one. Low IgG has a direct correlation with the gut and low IgA, too. I had mercury removed and did chelation and my immune system is lower now than it ever was and that was 12 years ago that I did that. I have come up with no mercury anymore or lead.
     
  9. dannybex

    dannybex Senior Member

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    IgG wasn't measured...just IgA.

    Anyway, good to hear you're doing a little better. It definitely takes some work to go gluten-free, but it's also definitely worth it. We had a woman in our local group -- 63 years old, with lyme -- who found out she had celiac. Within 2-3 months of going gluten-free (she was very, very strict about it...rotated grains, etc) she was back skiing in the winter and hiking in the summer. She got so much stronger just by eliminating all gluten grains that she took her time dealing with the lyme...
     
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  10. Symptomatic

    Symptomatic Senior Member

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    IsSCIG (subcutaneous IgG) an option to explore?

    http://www.iggamerica.com/patientscaregivers/learn.html

    4. What is subcutaneous treatment? When is it used?

    For individuals with immune deficiencies, IgG may be infused just under the skin rather than into a vein. There are several advantages to subcutaneous administration. Individuals often report that it is less painful, experience fewer side effects and avoid frequent trips to the infusion center or physician office.
    Patients are taught to do subcutaneous infusion independently at home. Unlike IVIG, subcutaneous administration is usually done weekly. The abbreviation for subcutaneous immunoglobulin is SCIG.
     
    Misfit Toy likes this.
  11. Misfit Toy

    Misfit Toy Senior Member

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    Wow! Symptomatic, never heard of this so thank you!!!
     
  12. Ema

    Ema Senior Member

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    SubQ IgG therapy is called Hizentra by brand. This is the patient assistance program I mentioned to you before.

    I've been doing SCIG for about 9 months now. I hear about all the side effects with IVIG and wonder why anyone would ever choose that way. Hizentra is easy to do once a week and I never premedicate for it.

    The only reason you might have to do IVIG is if your low IgA level requires a low IgA brand. But even that is up for debate with many patients with low IgA doing fine on typical IgA products. Hizentra has a moderate level of IgA.

    If you need IVIG, there are companies and specialty pharmacies to help you get approved. I don't know anyone that pays $1500. Mine was totally free including 3 nursing visits. Yes,it does take time but it is worth it.

    I hope you are feeling better.

    Ema
     
    SickOfSickness likes this.
  13. sianrecovery

    sianrecovery Senior Member

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    Wow MT, well done on keeping on trying. I really, really, feel for you. I have a genetic kidney disorder, and pain and passing damn kidney stones is a lifelong companion for me. Also nerve pain in my face from long-term infection and incompetent dentistry. Pain is a total f----. I am in recovery from addiction, which means I also have to be very, very careful about what and how I use pain meds. Lost some good friends who got that one wrong. I'm sure you already have tried all the non-med stuff, but in the spirit of being in the solution, for myself I also find the behavioural stuff helps me manage pain - anything that lets me calm down the sympathetic nervous system, anything that lets the body just relax a little, whether that's gentle movement, touch, acupuncture, or the energy stuff like Donna Eden. Good luck, hope what you need appears.
     
    Misfit Toy likes this.
  14. Misfit Toy

    Misfit Toy Senior Member

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    To be honest Ema, I haven't even had time to REALLY look over what you sent me. I have been too sick to do all of this. I am living at the doctor's. I am not sure if I can talk my immunologist into the subcutaneous way, but will talk to her about it. I am glad she found what she found but to honest, she is a bit of a bitch. She has ZERO filter. She is the one who tells me with medicare that I should purchase a coffin due to Obamacare. Thanks. Thanks for such positive uplifting news lady.

    Anyway, will hopefully really look into what you wrote or sent. It's sitting next to the pile of tests, blood work, etc along with things I need to fill out for free meds. I printed it out. I am just tapped out. Tapped out, tired and in pain. My fatigue is just huge, on top of having a mom with dementia...and me trying to help her. I am worn out.
     
  15. rosie26

    rosie26 Senior Member

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    sending you love and strength, prayers misfit xxx
     
    Nielk likes this.
  16. Misfit Toy

    Misfit Toy Senior Member

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    Hey, I didn't mean to have anyone feel bad. Please, there are people worse than me. I am just explaining why I didn't look at what Ema sent me. Thanks though, Rosie.
     
  17. rosie26

    rosie26 Senior Member

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    Sorry !!
     
  18. Misfit Toy

    Misfit Toy Senior Member

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    No, don't be sorry. No need!
     
  19. sianrecovery

    sianrecovery Senior Member

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    Caring for an dementing family member completely wipes the floor with healthy people, let alone someone poorly. You are remarkable for taking any active part. Huge big hug.
    That bloody doctor has to go though - what an utter bitch.
     
    Lou, peggy-sue and Misfit Toy like this.
  20. Misfit Toy

    Misfit Toy Senior Member

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    sianrecovery, she is something else. The doc. She told me she doesn't get paid much and that I need to start putting all of my test results on a spread sheet before coming in. Um, lady... I am sick!! HELLO!

    Yes, my mom can be difficult. I have no patience when sick and you have to have patience. I am so glad I never had kids. I would give them a bowl of cereal, put them in front of a TV and go to bed.

    Not good parenting skills. Too knackered! And there are times when I have to lay down. I come to a full stop.
     
    sianrecovery likes this.

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