Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hi everyone,
so I have posted infrequently here over the past few years. I was diagnosed in January of 2011 and have learned that CVID is truly the chronic illness that just keeps giving.
My CVID present with chronic sinusitis and it took about 6 years to be properly diagnosed. I was on IVIG for 2 years and it got rid of the chronic sinusitis, but did nothing to help with the progressing GI issues. I tested negatively for parasites and C. Difficile, and was wrongly diagnosed with IBS.
My symptoms were: intermittent vomiting, chronic diarrhea, not digesting my food properly, gas, bloating, and generally feeling tired and disgusting. It was experiencing horrific levels of anxiety and started becoming intolerant to a lot of foods, particularly alcohol (uncontrollable vomiting/nausea the day after having even a sip of alcohol). I also started absolutely craving carbs and fatty foods.
My family doctor was not taking me seriously and my specialist finally got fed up and placed a referral for me to see a GI specialist. Our medical system in Canada sucks for chronic conditions and the waiting list to see a GI specialist where I live is 2+ years. Insanity right?
Long story short, my family sent me to the Mayo Clinic in Rochester. They poked and prodded me for 2 weeks. I got a lot of good news--my CVID is not involved with my organs and I am in the 'grey zone' which means I MIGHT be able to go off treatments one day... And the illness plaguing me was real and actually a very insidious type of infection.
They discovered a nasty bacterial imbalance in my small intestine. It is VERY common for people with CVID and if you are affected it will most likely be a recurrent issue as the immunoglobin treatments cannot penetrate the blood/gut barrier. Thus, IVIG and SubQT treatments will not help with any GI issues or involvement of CVID. Ah, don't you love CVID? I am sorry but those damnable treatments are not a the 'cure all' they are cracked up to be.
All it took was 2 weeks of antibiotics and I am feeling better than I have in the past 10 years. If you have chronic 'IBS', get a Breathe Test done as you may actually have SIBO (small intestinal bacterial overgrowth). The defining difference between SIBO and IBS is the response to probiotics. Probiotics will made SIBO patients feel better and IBS pateints feel worse. Symptoms include: excessive gas production (burping, etc), chronic diarrhea, inability to digest carbohydrates, intermittent nausea vomiting, fatigue, etc... Basically, the bacteria invades the small intestine and starts eating/fermenting the starches, and the toxins produced by the bacteria strips the mucousal lining from your intestines. Fun times.
It has not been clinically proven yet but Acedophillis Casaei is the probiotics which has shown to be effective in helping to keep the small intestine healthy and bacteria free. This is a very under-diagnosed condition and I am probably going to have issues with it again. But at least now I know what it is. I'm not crazy. It's not stress. It's not pregnancy. It's not IBS. It's the CVID, the lovely gift that keeps giving.
Has anyone else encountered this lovely insidious beast of an infection? Or had GI issues with CVID? I would be curious to hear about your experiences.
so I have posted infrequently here over the past few years. I was diagnosed in January of 2011 and have learned that CVID is truly the chronic illness that just keeps giving.
My CVID present with chronic sinusitis and it took about 6 years to be properly diagnosed. I was on IVIG for 2 years and it got rid of the chronic sinusitis, but did nothing to help with the progressing GI issues. I tested negatively for parasites and C. Difficile, and was wrongly diagnosed with IBS.
My symptoms were: intermittent vomiting, chronic diarrhea, not digesting my food properly, gas, bloating, and generally feeling tired and disgusting. It was experiencing horrific levels of anxiety and started becoming intolerant to a lot of foods, particularly alcohol (uncontrollable vomiting/nausea the day after having even a sip of alcohol). I also started absolutely craving carbs and fatty foods.
My family doctor was not taking me seriously and my specialist finally got fed up and placed a referral for me to see a GI specialist. Our medical system in Canada sucks for chronic conditions and the waiting list to see a GI specialist where I live is 2+ years. Insanity right?
Long story short, my family sent me to the Mayo Clinic in Rochester. They poked and prodded me for 2 weeks. I got a lot of good news--my CVID is not involved with my organs and I am in the 'grey zone' which means I MIGHT be able to go off treatments one day... And the illness plaguing me was real and actually a very insidious type of infection.
They discovered a nasty bacterial imbalance in my small intestine. It is VERY common for people with CVID and if you are affected it will most likely be a recurrent issue as the immunoglobin treatments cannot penetrate the blood/gut barrier. Thus, IVIG and SubQT treatments will not help with any GI issues or involvement of CVID. Ah, don't you love CVID? I am sorry but those damnable treatments are not a the 'cure all' they are cracked up to be.
All it took was 2 weeks of antibiotics and I am feeling better than I have in the past 10 years. If you have chronic 'IBS', get a Breathe Test done as you may actually have SIBO (small intestinal bacterial overgrowth). The defining difference between SIBO and IBS is the response to probiotics. Probiotics will made SIBO patients feel better and IBS pateints feel worse. Symptoms include: excessive gas production (burping, etc), chronic diarrhea, inability to digest carbohydrates, intermittent nausea vomiting, fatigue, etc... Basically, the bacteria invades the small intestine and starts eating/fermenting the starches, and the toxins produced by the bacteria strips the mucousal lining from your intestines. Fun times.
It has not been clinically proven yet but Acedophillis Casaei is the probiotics which has shown to be effective in helping to keep the small intestine healthy and bacteria free. This is a very under-diagnosed condition and I am probably going to have issues with it again. But at least now I know what it is. I'm not crazy. It's not stress. It's not pregnancy. It's not IBS. It's the CVID, the lovely gift that keeps giving.
Has anyone else encountered this lovely insidious beast of an infection? Or had GI issues with CVID? I would be curious to hear about your experiences.
I just wanted to thank you for your detailed post about the findings at the Mayo! As someone who frequently struggles with GI issues, this was extremely helpful, in particular the name of the strain of the probiotic that is effective. I have found that taking a probiotic regularly settles things down; now I wonder if it is because I have an issue that is similar to yours. I have had a breath test done here in Europe, but it was before all the GI stuff really got going. I also find that I go through phases when I need probiotics daily and then other phases where I don't, which also fits with the SIBO. Incidentally my new gastro here has recommended green juicing, which I have just started doing in the past week. He has had good results with numerous of his patients who have inflammatory conditions, so thought it might be worth my trying it (I have autoimmune manifestations and a lot of inflammation).
Btw I am Canadian and left Canada and moved to Europe because the level of care (including the unacceptable wait times to see a specialist - here I can see most specialties within a week, if I want a rock-star specialist it will take at most 4 weeks) was horrendous compared with what I get over here, and I lived in Toronto btw, a place where one would think one could access specialists reasonably quickly. A big price to pay on a personal level, but overall worth it in my case.
Thanks again and if you have any more info that you think might be useful it would be super to know!
I found this website at the right time and your words have given me hope. Thank you..
Thank you so much for sharing your experience with GI issues. I was wondering if you suffered low potassium and sodium due to the chronic diarrhea.? I am new to this forum and new to CVID, recently diagnosed and not yet receiving treatment. I was in the hospital this past weekend for dangerously low potassium and sodium but the doctors there refused to believe it had anything to do with my immune disorder. They insisted I must be forcing myself to vomit I have printed your letter to take to my new immunologist 2 hours away near Charleston, SC. I live in a little beach town with lack of adequate care so Charleston is the closest place with decent doctors. I moved from MI right after my diagnosis of CVID never dreaming it would be so hard to find a doctor here, yet alone an Immunologist.
I found this website at the right time and your words have given me hope. Thank you..
Yes, I too was diagnosed first with CVID and then with SIBO (though I had had the SIBO symptoms for 8 years longer than the CVID). The literature says that up to 30% of us will have some GI problems. The problem that I encountered is that even after I was diagnosed with SIBO, no one treated me for it, beyond putting me on the FODMAP diet. The idiot GI doctor that I had; he loved to scope and probe, but never really went beyond that to effectively treat the SIBO. I eventually started self medicating with a single Flagyl 500mg once a week. This did wonders for my SIBO, though it was not completely gone. More recently, I was on 4 months of Augmenten, and that completely eliminated the SIBO, which was bliss compared to the past 14 years. Now I am on Vancomicin and that too is almost completely eliminated the SIBO symptoms. If you can, having a pill cam endoscopy helps, as they found several lesions in my small intestine, and those had to heal and stay healed before I started to feel better.
To try to answer some of your questions:
LightLines: hello fellow Canadian! I hope you are enjoying Europe... I loved it there and, especially, their medical systems. I would recommend getting the breathe test done when the symptoms are bad... I will let you know if I find out any more useful information on probiotics. My cousin is a Naturopath and treats SIBO patients, she was going to give me some information on nutrition, probiotics, and a SIBO friendly food list.
Olived: I did have low potassium levels (not super low, but low). I had doctors telling me much the same--GI issues were not related to my immune system--they are straight up wrong. It's pretty much common knowledge for any good immunologist of GI specialist. I will post some links for everyone.
PacificDesigner: Yes, I have been struggling with it coming back as well. Thank you so much for sharing about your experiences with antibiotics... Rifaximin is effective but insanely expensive. Have you tried going on an elemental diet? I am considering it... Food is making me so miserable.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3901442/
http://www.ncbi.nlm.nih.gov/pubmed/18043034 (abstract only)
http://www.ncbi.nlm.nih.gov/pubmed/15341713 (abstract only)
http://www.ncbi.nlm.nih.gov/pubmed/25758107 (abstract only)
There are over 160 sources cited in the references of the first article... It's pretty accepted that people with CVID very commonly also have GI symptoms.
I've had the same problem with doctors who are uneducated with immune deficiencies claiming that GI issues are not related. But they are straight up wrong. Just print these article off and make your doctors read it if they try to brush you off. .. Thee is some legitimate medical research right there.