A Long Slow Slide

June 30, 2008 at 6:08 pm 11 comments

Well, for the last 6 months I have been more sick than I have ever been in my whole life. I began IVIG treatments here, in New York, in early February. Since then, I have had 5 colds and 4 bouts of stomach virus/food poisoning. Right now, my colon is twisting itself in knots…I have horrendous gastrointestinal issues. The immunoglobulin doesn’t seem to be doing much good. Granted, everyone else I know has been quite ill this winter/spring and they all have healthy immune systems. But I feel like my GI tract is really malfunctioning.

Now I don’t produce any IgA, the most common protective antibody for the colon, so I guess this is to be expected…but it really sucks.

My health really seems to be in a serious state of decline. I have an appointment scheduled this week with my immunologist to discuss diagnostics and next steps. I will let you know what she says. I’m afraid I may have colitis.

 I am having a hard time dealing with this decline. I have an image of myself as a rugged outdoorsman, backpacker, camper, swimmer, etc. Now I feel like that life is permanently over. I don’t ever forsee being healthy enough to even go to the gym. I’m even thinking about quiting my job, I just don’t have the energy anymore.

I watch my 15 month-old daughter scamper around the house and I doubt that I will ever be able to coach her softball team, teach her to ride a bike, show her how to pitch a tent.

I’m only 44 but I sit here with no answers, with no success, waiting out a long slow slide.

Into what?

There is nothing attractive about that future.

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Entry filed under: autoimmune disease, Common Variable Immunodeficiency(CVID), cvid, disease, Health, immune system, immunodeficiency, medicine, Primary Immunodeficiency, Uncategorized.

Ch Ch Ch Changes… Campylobacteriosis and CVID: Another Story About a Boy and His Dog

11 Comments Add your own

  • 1. Barbara  |  July 3, 2008 at 6:50 am

    Not sure what path led me to your blog. I suffer from a form of autoimmune vasculitis called essential mixed cryoglobulinemis…secondary to chronic hepatitis c. While I have existed nicely for a decade with the knowledge of hep c, it is the
    vasculitis which threatens my health the most. I can relate to the fears you have voiced in trying to cope/overcome this threat to your health. And something about a rash makes the disease so “present”. I find myself checking the severity of the rash as a yardstick of my health, while I know that it is really no indication of what is happening to my organs.
    I have decided against the rituximab because of all the possible problems. My treatment right now is strictly dietary. I have found a huge correlation in what I put in my body and how I feel. Seems so simple! I want to recommend you checking out Jan deVries’ website and books, particularly Viruses, Allergies and the Immune System.
    My best wishes to you

    Reply
  • 2. Charlene  |  July 19, 2008 at 6:52 pm

    I’ve had hives on and off for 10 years. I started getting them when I was 24. Tried all the meds: zyrtec, atarax, zantac…. They went away when I became pregnant at 31. I just recently got the darn things back again. I’m no longer using an allergist, I decided to take the homeopathic route this time. I find an amazing web site about chronic illnesses it’s called:ask dr walt stoll. You can google it. Basically in a nut shell we have burnt out adrenal glands, that cause a leaky gut that allows crazy toxins in our bodies to escape. These escaped toxins cause our immune system to go into overdrive creating all sorts of autoimmune issues. PLEASE check the website out! It’s given me tremendous insight to why I have my hashimoto thyroid and hives. I’m working with a naturopath now. He put me on adrenal and spleen supports. Also, I’m going to to a liver cleanse. I’m also looking into mediatation to help my burnt out hypothalamus/adrenals. Don’t give up! I have a 3 year old son and I understand what it’s like not feeling weel enough to keep up with them! Please remember the web site dr walt stoll. It’s the ONLY thing I’ve come across to tell me why my body is allergic to itself!! I agree with what Barbara said about diet. I completely cut out:soy,dairy, eggs, wheat, and citrus fruits. I’m also having my stomach tested for candida and parasites, as well as , my adrenals glands. HANG IN THERE:) And please just check out the site! Hope to see your blog on the bulletin soon! Dr. Stoll is wonderful and so is everyone on the message board!

    Reply
  • 3. Elizabeth Hughes  |  July 23, 2008 at 7:09 pm

    Hi! Well…. I can COMPLETELY relate! I am also 44 years old! AND I was just diagnosed with CVID with IgA deficiency myself in June, had my first IVIG in July and still feel really crappy! After seven years of pain in my left side under my ribs (sound familiar?), getting sick all the time, sinus infections, bladder infections, recurrent kidney infections, FINALLY a doctor listened, did a CT scan, found my enlarged spleen and lymph nodes (all characteristics of our disease) and now, at last, I’m getting treatment!

    Doesn’t seem like the prognosis is actually that good. All the literature I read says… “blah, blah blah, live a normal life”, etc. But when I read blogs from actual patients, I hear about the REAL story, people continuing to live in pain and with continuing infections!

    What do you have to share? Any advice for coping with this diagnosis??

    Reply
  • 4. Ted Meeker  |  August 28, 2008 at 12:08 pm

    My wife has had CVID for over 30 years and has been receiving IVIG since 1984. At various times, she has gone through what you are going through, and this has increased over time. Recently, however, we got a new young Gastroenerologist who, in response to a number of recent gastrointestinal problems (including recurrent C-Difficle), put her on probiotics, specifically “Align”, and that has made an enormous difference. She has been much better, indeed, by a considerable margin since she started this. She has had no gastrointestinal problems, after going for years with them, and is stronger and healthier in every way. I am not saying that this is the be all and the end all, but anyone with CVID and the kind of problems you are looking at, should certainly look at pro-biotics.

    Reply
  • 5. Joann  |  September 5, 2008 at 3:53 pm

    I completely understand what you are talking about. I was diagnosed with CVID in May of 2006 and it’s been frustrating ever since (and for about 10 years before). I won’t tell you to “hang in there” as I’ve been told this by countless doctors who didn’t understand and couldn’t help in any way. I will say to keep fighting as you obviously have a lot to fight for! I have to remind myself to keep fighting as well, as I have very “down” days sometimes. The GI issues are absolutely the worst part of this disease! I can deal with the sinus infections, ear infections, bronchitis, etc., etc. but I cannot function with chronic GI pain and all of the ugly symptoms that go along with it. I have very low IGA along with the low IGM and IGG so I am very susceptible to intestinal infections. I’ve been dx with what seems like every GI term under the sun (IBS, UC, Crohn’s, duodenal and gastric ulcers, celiac, etc.) but I think only some of them are correct (the ulcers were seen on a scope). I had a very bad GI bleed a few months back and tests showed high white blood cells too. So it may have been infection or UC. I took Asacol to no avail. The meds for UC are counterproductive in patients with CVID though as they supress the immune system and that’s not an option.

    I have started vivaglobin just this past month and I’m hoping for a miracle but not expecting one of course. I am going to a GI specialist who seems to understand how I feel but sometimes I “no show” to these GI appointments due to GI issues (such a catch-22)! However, I’ll keep fighting and keep praying becaues it WILL get better! I have spent a small fortune seeing many different natural practitioners but nothing has helped much. I don’t eat any dairy, wheat, or sugar and though I don’t feel “better” I’d feel much worse if I did eat any of these things. I don’t know if it helps, but you are not alone in this and there are a lot of great websites for support (it took me two years to accept the fact that I needed to look on a support website:) You can post here or on other websites to get advice on doctors in your area or find out what works. I hope you find relief soon! If I find a “magic cure” 🙂 trust me, I’ll post it here:-)!! I did have to eventually quit working. This was a very sad fact for me to realize and adjust to, but it was something that I HAD to do and I did it with my doctor’s encouragement. Talk to your doctor if you feel that working is too much right now. SSDI is available, though it’s another fight…I worked hard and got SSDI within 5 months (approved the first time, no denials like I was worried about). I had just put myself back through school at 30 and was filling out my graduation information at the same time as my SSDI paperwork (I missed graduation, which was hard since going back to school full time with three children was a huge accomplishment). However, I’ve learned to adjust but not give in to this disease. I wish you healthiness and strength to fight and feel better!

    Reply
  • 6. wrekehavoc  |  September 12, 2008 at 3:04 am

    after first coming down with a horrible case of ITP, i, too, have CVID (negligible IgA, low IgG) and am being treated with IViG. i’m about to get my gallbladder out, as i am experiencing biliary diskinesia (my gallbladder is basically not squeezing out joy). i absolutely understand where you’re coming from — it always seems like yet another freaking shoe drops.

    i, too, am about your age and have young children. and i notice at times i have trouble keeping up with them. FWIW, though, it is they who drive me to keep on and keep trying to do whatever i need to do to: a) have energy to keep up with them, and b) simply be there. part of it, too, is that having young children is simply exhausting, esp when you’re in your 40s (as we both are.)

    i have started taking probiotics, and it makes me feel a bit better in the gastrointestinal dept. i’m trying to clean up my diet. i wonder whether gluten is playing a part in all of this.

    anyway, hang in there. the prognosis isn’t a death sentence. both my oldest brother and i have CVID, and i have to tell you — he looks/feels better now that he ever has. i’m trying to follow his example and just do what i can about the things over which i have some control. everything else — well, i guess we all have to be vigilant and take it as it comes.

    Reply
  • 7. Leigh  |  November 10, 2008 at 9:15 am

    HI. Not sure how I found you, but wow, seeing these comments and reading your blog, I’m feeling like I’m not all alone in this after all. I was diagnosed last year with CVID and have been getting IVIG for over a year now. I have SERIOUS gastrointestinal issues and have had them for over 20 years. Course, they have gotten considerably worse over the last couple of years. I am always in pain somewhere. I know I have arthritis but my bones and muscles and joints always ache and hurt. I’ll be 40 on Thanksgiving day but feel most days more like I’ll be turning 70 or more. I have a 14 month old adopted daughter and want so much to feel better to be there for her, but fear I’ll never be able to be the parent I want to be.

    Reply
  • 8. Woody  |  December 2, 2008 at 11:15 am

    I am in essentially the same position as others here. One major thing we have done that has helped me in the last year is being treated with Pentasa for Chron’s or Chron’s like symptoms (I say Chron’s like because I think it is just another symptom of CVID). I take about 1,000mg per day in two separate doses. The Pentasa is nice because it is targeted at the intestines and not the stomach. It also nice because it is not a steroid. It has done wonders for my digestive system. While it is not perfect, I am actually gaining some weight and losing less proteins than I was without it.

    Woody

    Reply
  • 9. rebeccazook  |  July 1, 2009 at 12:35 pm

    Another CVID patient here. My hives are autoimmune, they actually detected the IgG antibodies that are attacking the IgE receptors on my mast cells, though when I was finally diagnosed in July 2008 at age 40 with CVID and began IVIG the hives quieted down. Now I only get them the last week prior to an infusion.

    I also initially thought I was allergic to something. When I ate…anything…my body acted like it was going into anaphylactic shock…my immune system went haywire. Unfortunately, I’ve also lost much of my hearing to autoimmune attacks, and a 1/3 of a lung to an abscess. My problem is with a lack of IgG antibodies. IgA is low normal, maybe that’s why my digestive problems, though bad, don’t seem to be as bad as some of the people here are describing. Probiotics do seem to help. I have a blog here also that deals with CVID as well as art. I will link yours to it if that is alright

    Reply
  • 10. susan  |  August 2, 2009 at 2:47 pm

    I don’t remember how I stumbled onto this site, but what a God send!! I have recently been diagnosed with CVID and start my infusions soon. I have been ill for 20 years, I’m 59.
    Thank you for all the useful information and compassion.
    I have not yet found a site with such detailed GI information. I was beginning to think that most CVID sufferers had other more important issues, mostly respiratory.
    Thanks again to all, and I look forward to visiting often.

    Reply
  • 11. tammy  |  January 27, 2012 at 5:45 am

    I know exactly how you feel.I have been receiving weekly infusions for 2 years and have declined and sm no longer able to work.I hope that your immunologist acknowledges these problems because I have the exact problems but my doctor doesnt and has not put me on antibiotic therapy once and mine is that i dont produce antibiotics for strepoccocus pneumonia and have fibrosis in the lungs from having pneumonia so many times. I hope that more doctors read what cvid patients write about their symptoms and acknowledge and treat them. Anything that I know about it has been through my own reseach.I hope that your doctor appt. went well. Try healthtap.com ..the dovtors will answer any questions that you have and they have numerous immunologist. Good luck my prayers are with you

    Reply

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