My name is Erin, and starting when I was four years old, I was always sick. Sinus infections, pneumonia, the flu, the common cold, mono – and any virus or bacterial infection that anyone around me got, I contracted.  However, when I picked up illnesses, it was far worse and took much longer to get rid of.  There were times in my life when I was on antibiotics for 8-10 months out of the year, and I usually couldn’t go longer than a month or two without getting another virus or infection.

By the time I was in my mid-twenties, I had had a dozen surgeries, including a hysterectomy because of complications from my as yet undiagnosed illness. Over the years, I started to get other strange symptoms like joint pain, debilitating fatigue, swollen lymph nodes, vision problems, persistent nausea, and enlarged spleen. I must have gone to hundreds of doctors in my lifetime, and was misdiagnosed with everything from fibromyalgia to chronic mono to mental illness. My parents were accused of being overprotective hypochondriacs, and I was even accused of being a drug seeker and it was probably ‘all in my head’.

Finally when I was 26 and had developed a MRSA infection in my sinuses that penetrated the bone, an infectious disease doctor decided to test me for CVID (common variable immune deficiency). When his tests concluded that I was unable to manufacture antibodies, we finally had our answer. I wasn’t crazy; I had a very rare disease that affects less than 6,000 people in the United States. I am 30 years old now, and I get monthly immunoglobulin transfusions.  When I get sick, we use IV antibiotics to aggressively control infections and my quality of life is so much better.

Unfortunately, delays in diagnosis for CVID patients is very common, and this delay results in irreversible organ damage and shortened life span. It is my hope that projects like Global Genes Project will help raise awareness of all rare diseases, so that no other children will have to go through what I went through.

And if you are reading this and you are living a life of uncertainty and can’t get diagnosed, don’t give up. Keep going to doctors until someone finally gives you the answers you are looking for.

Never give up hope – it’s in our genes!

30 thoughts on “For Years Doctors Told Me I Had Fibromyalgia, Chronic Mono and “Mental Illness”, When I Really Had A Rare Disease Called CVID (Common Variable Immune Deficiency)”

  1. Deborah Baldwin says:

    I had similar infections other atypical illnesses and latent diagnosis. I’ve recieved IV and Subque gammaglibulin. I developed adverse reactions to the treatments. Everything from temps,severe migrains to chest pain and congestive hesrt faliure. Yes their were episodes of clots ad well.
    I have chosen to stop treatments 2 years ago because I had no quality of life. My cardioligist told me I had to make a choice because the treatments were killing me.
    I am deficcient in IGG,IGA,IGM,IG3,and IG4.
    I know I am in the end stages and wish I could find some information to let me know what yo expect.
    I’m a retired Nurse and have done the literature scearches. I guess I need to start writing about my experiences so I can help others in need.
    Bless you for your post.

  2. Deborah –

    Hugs to you. We would love to share your story if you are willing. Visit the main blog page and click on the Submit your Story icon. We have #HOPE for you!

    All our best

    – Global Genes Team

  3. Erin Beavers-Cochran says:

    HI Deborah, I’m just now seeing your comment, I apologize for not getting back to you sooner. Luckily, I haven’t had bad reactions to IVIg, but now I’m uninsured and unable to get treatment. I’m hoping to get on SSI and Medicaid soon. Since you aren’t on IVIg, are you on prophylactic antibiotics? Sometimes that can help people who are unable to tolerate IVIg. Hope you are doing well.

  4. Kathie Hayes says:

    Deborah, I have also had the subque infusions with almost the same the reactions from the very first infusion. I even had the pharm. who makes and ships my IVIG supplies calling me every other day checking on me, she talked me into trying the subque infusion one more time this was my worse mistake. As I am talking to her on the phone, explaining my new reactions, my breathing gets more labored and I see my hands turning purple. If it had not been for my boyfriend knowing what to do, and having a Epi Pen I would not be here today. I am back on the IVIG through a port on my chest, (that I hate for people to see) that I was doing before, never have had any reactions. I would like to stop infusions but am afraid of outcome, I am interested in hearing how your life has changed since you stopped please keep in touch I didn’t get diagnosed until I was 54 and I’m very concerned.

  5. Deb says:

    Hi Erin
    I think we are on one of the CVID support groups together. I asked my doctor about all the insurance changes and if there was any help I can give to our group members who need their IVIG or SCIG & she told me that Baxter, CSL Bearing & a couple more Pharmaceutical Companies are offering IG to their patients. I would plead those people in this situation to call the Pharmaceutical company that makes their IG Products and talk with them about your situation. I sent a group member the supplies for 12+ SCIG the company provided her IG. There are so many who have extra supplies that they will send to people. DON’T go WITHOUT your IG REPLACEMENT!!
    Take care!!
    Deb

  6. Theresa Bayman says:

    Dear Deborah, Kathy and Erin,

    I’m 42 and was diagnosed with CVID when my daughter entered kindergarten. I was diagnosed weekly with URI’s. I was put on Sub-Q Infusions and for years struggled with fevers, extreme fatigue, achiness, migraines, etc. My doctor is incredibly supportive and, having exhausted what he knew, he was kind enough to refer my case to a University Med Ctr physician who specialized in pediatric immune deficiencies. Step one was a simple, yet strange to me…increase the infusion time/slow the serum. I went from 1hr infusions to 4hr infusions. Now, it wasn’t a miraculous cure, but I helped my husband paint the house that weekend (sad, but true that I was excited to paint, but for me it was a giant step forward being out of bed and having the energy to do something so taxing). I do more with my kids and husband on the weekends; I make travel plans without worrying that I won’t be able to make it; I felt human again. I have my weeks that do go as well and I have bouts with those same side effects if I’ve contracted something during the week, but my life has changed because of adding 3 hours to my infusion. We confirmed the gammaglobulin I use is stable for the 4 hours at room temp, and I had my Epi pen at the ready. The infusions are more uncomfortable simply because my skin is irritated for longer, but the trade-off…3 hours more for 3 better days…I’ll take it.

    The bottom line is, don’t give up. When you exhaust one doctor’s bag of tricks (so to speak), have another open his to you! My thought and prayers are with you on your journeys! Knowing we aren’t along is a comfort…and you will never be alone in this journey!

    Kindest regards,
    Theresa

  7. Denise says:

    I was diagnosed with CVID about 3 years ago, have been on IVIG infustions every month (every 4 weeks) and was told I have to get infusions for life. I just turned 60 and have 2 years and 8 months til I can retire at work, my employer is strongly urging me to retire now instead and apply for disability as I miss alot of work. But my immunologist does not seem to believe I have chronic joint pain and fatigue which I strongly believe is associated with my disorder and infusions, so without his help cannot get disability, don’t know what to do, need my insurance to pay for infusions. My dilemma is that after a few days at work I start feeling weak and achy, extremely tired, and my primary care physiciian keeps me on antibiotics but feel like I am getting worse. Should I see another immunologist, have already ruled out rheumatoid arthritis, but have osteoarthritis, any suggestions?

  8. Erin Cochran says:

    I would definitely suggest seeing another immunologist if this one doesn’t seem to be supporting you. Also it’s important to see a rheumatologist who is familiar with immune deficiencies, as many of the tests to diagnose them are invalid in us (antibody tests, etc.) so we have to be diagnosed other ways, like by symptoms. Sometimes chronic joint pain and fatigue are indicative of a dosage of IVIG that’s too low (there are articles online about polyarthritis and CVID). Even if your IgG levels are ‘high enough’ according to the numbers, dosage of IVIG should be based on symptoms as well as trough levels. Any time you think a doc isn’t listening to you, find another one!

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  10. Lee Kicklighter says:

    I have very high ebv counts. I was diagnosed with fibromyalgia. I’m not sure about diagnosis. Help.

  11. Benjamin Rosen says:

    Very interesting Blog sounds familiar to me as well. I’m still waiting for a diagnosis as well. I have has multiple surgeries vitamin deficiencies, thyroid issues among other stuff.
    Found out that from another doctors tests that my Gamma Globulin Fraction was low at 0.6.
    My immunoglobulin G was low at 640.
    My immunoglobulin m was low at 36.
    My Kappa light chain was low at 135
    My lambda light chain 76.
    My Co2 was low at 20
    Vitamin d was 24.9.

    My pneumo AB types 1,3,4,8,9,12,24,17,19,2,22,23,26,34,43,5,51,56,57,68 are low. For some reason 20,54, 70 are normal.
    haemophilus influenzae b IgG is 0.44
    Immunologist gave me two pnemonia vacacines and a hib vacacine and then they will retest my blood and see if the antibodies showed up. Then I guess go from there.

  12. Michelle says:

    I am a little concerned about some of the comments that have been posted about CVID. It is not a rare disease as a matter of fact it is very common. Patients are getting diagnosed more and more ever day. I myself am a CVID patient and do infusions SubQ once a month. I suffer from tremendous pains and am seeing a Rheumatologist to see if it could be fibromyalgia. CVID is not a death sentence as some of the comments make it look like it is. I also am the business / practice manager for an Allergist/Immunologist and work with all of our CVID patients and educate them as well. I strongly suggest you look at the immundificieny foundations website and gets some suggestions and maybe they can help answer some of your questions as well. I am more than happy to help anyone with information in getting free products and I would very close with Baxter who is the maker of Gammagard and HyQvia drugs for infusions. I also work with GSK and the maker of Hizentra

  13. Michelle says:

    Hi Denise Medicare covers infusions if you have them in an infusion center but you can also do these at home on your own and that is called SubQ after you are taught by the nurse how to do these. You have nothing to worry about go ahead and retire and rest assure you will still be covered for your infusions. Medicare covers 80% and the companies that make your drugs have all kinds of copay assistant for the other 20%. I am on HyQvia once a month and they have a copay assistant card for $4,000.00 a year. The drugs would cost me $150 a month but the copay covers that for me. Please let me know if I can be of any help. I am the office manager for an allergy/immunology clinic and I am also a CVID patient

  14. Tracy says:

    I am turning 43 in Sept, and was just Dx’d with CVID. I’m still waiting for last labs to clear, and then I guess the scans and treatment. I have been very sick for last 4 years, and have had many ‘strange’ illnesses. I’m glad to have a Dx finally, and I thank my Rhuemy for sending me to Immunology. (I also have Sjogren’s)
    However, I’ve been doing a lot of reading, and frankly, there are so many varied reactions to treatment, I’m now just scared. I’m extremely fatigued, and I have muscle and bone pain on a regular basis. I think my liver is ok. Not sure about spleen yet. I have terrible Gastro issues and eating is no longer enjoyable. I have 3 sons, homeschool 2 of them and work from home (like part-time). I’m having the hardest time ever juggling life and symptoms. Please, someone tell me there’s hope for treatment to help make things better! I’m not used to ‘slowing down’, and I’m getting new symptoms weekly. (Still trying to rule out or confirm MS as well) My insurance is terrible. So many hoops to jump. My husband is so worried. My boys are worries. I don’t want to be that burden of worry to them. But I’m seriously struggling right now. Immuno doc gave me a good book to read, very informative, but it’s depressing to know where I’m headed. I’m a lousy sick person. Any tips? Any special questions I should ask? Is it important to tell my doc I sometimes wake up choking at night? Do you all stay cold? (I only warm if running a fever, I swear). I just feel so bizarre, so in shock, to know what is the problem, and to know this is life-changing…

  15. Chel says:

    I am very confused……..I just started seeing an infectious disease dr. who says that I have cvid, but I need to get a pneumonia shot and another blood test to prove to hap that I do have this disease and can start the infusions. My confusion is……do these infusions really work? Do they really help? Are they worth going through? I hear one person say she helped her husband paint the house and she has ‘more’ energy…. 3 hours for 3 days. What does that mean? I hear more heartache and pain from these treatments then any kind of miraculous cure. I am scared to death to start getting these treatments. My Dr. tells me I will feel so much better, but everything I am reading is painting a very glum picture:(
    Yes, I was ‘glad’, I guess, that I finally had a name to my ‘constant sickness’, but what now? More sickness and pain and discomfort……..to make me ‘feel better’? Boo-hoo!
    I just want someone to honestly tell me………Is it worth it, or not?!?

  16. Donna says:

    I was diagnosed with CVID last January, I am six months into IVIG monthly infusions. I an 52, years of unexplained infections and surgeries. I found that after the first couple of treatments, I have a day of mild headache and then I feel like a new woman. I truly feel like I have energy like never before. I feel better, brighter and even sleep better. I read all the internet stories and was so frightened I spoke to the doctor about results if I didn’t have treatment. I know it’s scary but honestly, having lived this way for soooo many years, I didn’t know the possibilities until I experienced it. Best of luck.

  17. Eileen says:

    Hello All,
    Is this blog still active? I’m hoping to hear from Michelle or anyone else that can help me with getting assistance for my meds. I’ve been diagnosed with CVID and my first month of meds cost me $2533.00. They say it’s because I haven’t met my deductible but no one can tell me what it will be next month. I’m getting SubQ infusions oh HyQiva at home. Any help would be greatly appreciated. Thank you!

  18. Almost half of adult population have ebv present. Once you have it, it will never go away. Healthy adults suppress the virus and never have to give it another thought. CVIDers, and immune compromised guys will face some challenges, sometimes a lot. I have. Anyways, EBV really ain’t no big deal compared to the jungle of other deficits we face. In other words, don’t freak out.

  19. Hi I was diagnosed with CVID 1 yr ago. I am receiving IVIG treatment every 3 weeks. I have pain feel shake and get soar throats and ear aches. I frequently have a stiff neck. I’m wondering if I need to see an infectious disease doctor. I think I need antibiotics. I’m currently treated by my reumatologist. What other doctors to folks see? I need help

  20. Allison Black says:

    I see an asthma and allergy specialist, and my blood doctor is also knowledgable about this condition, that i also have. I take sub q gammaglobulin and am on antibiotics daily

  21. Allison Black says:

    Insurance covers part of the costs, but check with the manufacturer of the treatment, sometimes they have an assistance program.

  22. Allison Black says:

    I too was scared of the treatments, and finally I began them and they made all the difference in the world. This condition is tough to deal with on many levels but the gammaglobulin is totally worth doing.

  23. Eileen says:

    I have checked with HyQvia (what I’m taking) and they do have an assistance program. I got the help I needed. Thanks so much for your reply!

  24. Andi says:

    I am 62 yo female recently diagnosed with CVID, I’ve had two IVIG infusions. The first one helped me tremendously as I had been very sick for 2 years with repeat infections and illness. So, I was so weak and literally thought I would die…then my first infusion…I was still weak and nauseated for about a week, then I had a burst of energy for about 10 days. I thought each time I would get my infusion the same burst of energy would follow. With my 2nd infusion I had a slight reaction some itching and burning at the IV site. The nurse told me that they will give me the infusion at a slower rate next time. Well, I waited and waited for that burst of energy and it never came. I’m 6 days from my next infusion and am having tremendous joint pain, fatigue, nausea and confusion. Which causes me to become emotional and depressed! I’m not having a very good time, even though I’m clearly much better than I was before IVIG. is my experience common? Do I need a higher dose? I got my first bill for the two infusions…it was $31,169. I understand that there is agencies that help relief the financial burden. I look forward to all responses!

  25. Andi says:

    I see an immunologist and my primary care Doctor oversees my pain management. I experience the same issues as you do. It’s not an easy condition to cope with thus far! I’m spending a great amount of time in bed!

  26. Eileen says:

    Hello Donna,
    You probably need to see an immunologist. I have severe outdoor allergies that cause many of the symptoms you mentioned and I was diagnosed with CVID about 6 mos ago by my immunologist.
    Good luck!

  27. I was diagnosed with CVID in January, 2015 and administer sub-q infusions once a week. I retired early at age 63 due to missing so much work because of my frequent illnesses. I have been out of the work force for 3 months now and my health has greatly improved! The frequency of viral infections has decreased due to lack of exposure to ill co-workers. I would encourage anyone with CVID to get out of the work force if at all possible. It cost me a significant amount of money to do so, but I feel SO much better most of the time!
    I also want to see if you fellow CVID folks have frequent muscle aches like those that are present with the flu. This is my major complaint, as well as fatigue. Since I am no longer working, I can rest when my body feels tired. I would appreciate any comments any of you might have. Thank you!

  28. Mara says:

    Same here!!!!! Started with fibro diagnosis…..lived with extreme fatigue until we discovered I had CVID when I was 43!

  29. Jeanne Mandell says:

    The I. Under Deficiency Foundation has patient advocates who can help you deal with insurance issues. I doubt that you have a $25,000 deductible

  30. Beth says:

    Those who have mentioned being uninsured or underinsured leading to lack of ability to get lVIG, try this website- needymeds.org.

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