Hi everybody,

I am going through a lot of frustration right now and any help/advice would be appreciated. I am 31 years old. At 18 I was diagnosed with fibromyalgia and the diagnosis continued from there. At 29 I was diagnosed with CVID by Dr. Sudir Gupta at UCI in CA. He was an excellent doctor and my primary did a wonderful job in linking all of my infections and fatigue to a immuno work up. I had seen two other docs before going to Dr. Gupta, who each told me on the first visit that they wouldn't treat me. Dr. Gupta told me that I'd have "super immune system" after receiving the infusions. Getting that diagnosis justified all of the pain that I'd dealt with for the past 11 years at that time. Like others, I'd been told that it was all in my head, or I just needed to exercise more, etc.

Unfortunately for me, I had severe reactions to the IVIG. The first time took two days with stopping the infusions with chills, massive headache, and aseptic meningitis. However, with the dose slowing I was able to get the full dose. I had a high fever both nights after the infusions but I have to say that I felt great. The muscle and joing pains were gone and after a few days of beign sick after the infusion, I was free of illness for 2 months. A very big deal for me!! After problems with insurance approvals, etc, two months later I had my second infusion. This time the reaction came sooner and the infusion was stopped after 3 hours. I was told that there is no other treatment for me. My insurance would no longer allow me to see Dr. Gupta. I waited 6 weeks for a referral and appt with a doctor with UCLA. This doctor reviewed my info and told me he couldn't see me as he treats mostly asthma patients. Frustrating! With being so sick (CVID, PCOS, Ulcers, Celiac, Fibromyalgia, CFS, etc...)we weren't doing very well financially. The medical bills were coming in, yet there were no treatments. We decided to move to Colorado for many reasons (love it here by the way!!) but I am having a hard time finding a good immunologist here. I have been seen by an immunologist here, the problem is she doesn't think that I have CVID (which would be great if I didn't feel like I do I've been through many studies that show problems with my lungs, mild splenomegaly, and enlarged gallbladder, as well as many simus problems. My blood work shows high iron levels low C2 (?) and high Rheumatoid Factor. She told me that I didn't "look" like I have CVID and that she thinks something else is causing my infections, fatigue, and overall pain. It's like waking up with the flu every single day. Oh yeah, my Igg, Iga, and Igm are also low. She feels that it's still not CVID and I am not getting treatment of any sort right now. She mentioned that I don't have CVID because I have my tonsils still, and that people with CVID don't have their tonsils. Has anybody heard of this? I can't find any info related to tonsils and CVID. I am at a complete loss right now, but will NOT give up as I have so much to do with a beautiful family and outlook right now. Just feeling lost and confused. I just found this site and it's great to see that there are other people out there that can offer advice and possibly help.

Best wishes

I know how frustrating the medical system can be. My granddaughter was diagnosed with CVID by her ENT. Then sent to an epidemiologist at duPont Childrens Hospital. Her Igg levels are very low. She started IVIG when she was 6. She also has many lung issues, chronic sinus infections, arthritis, fibromyalgia, many allergies {dairy, fish, most antibiotics, mold, mildew, her own tears, her own blood, osteo penia, etc. She went on glutton free diet for one year, no difference, decided she didn't have celiacs disease. She reacted to IVIG also, has to be given slowly, takes pre-meds to prevent migraines and nausea. She has already had the surgery for acid reflux. That took a while to heal but was worth it...no more acid reflux [she took 5 acid blockers a day with no relief} also had bacteria overgrowth. After surgery the reflux was gone as was the bacteria overgrowth. All the lung issues have disappeared. Her biggest problem now,besides immune problem, is chronic sinus infections. She has recurrring sinus surgeries but mainly feels better. She also has an enlarged spleen, all the typical symptoms of CVID. She is 13 now and doing much better. She gets influsion every 4 weeks and has her levels checked every 6 months. Please try to find someone to help you. Your quality of life will surely improve. It took us several doctors and hospitals to get what she needed. Her life isn't easy....breaks bones easily, can't do much that is too physical[can't take gym, isn't suppose to run, can't ride bike or skate etc. Other than that she lives with this condition and most people don't know all her medical problems. From the outside she looks like a normal teenager...as long as we keep on the right track we hope she will have a long, happy life. Life could be better, but as she says after coming home from duPont, "at least I come home, some kids don't". Best of luck to you and keep on looking. Carol

I think you need a second opinion. I had the same symptoms as you. I am CVID and I still have my tonsils. I am 36 and live in el paso texas. I do not have good pickens for an immunologist so I have an infectious disease doctor who takes care of me. He never even mentioned tonsils. I don't think he even mentioned them. If you go on the websites none of them say that we shouldn't have our tonsils. Sounds like your doc doesn't do her research. Try to find another immuno doc or an ID doc.

Carol,

Wow, your granddaughter has a very positive outlook on life! I can learn from that on my "down" days. Thank you!
I also tried the gluten-free diet with no changes, so I added back the gluten because it didn't make a difference. Has your granddaughter tried doing a nasal wash? It has helped me with sinus symptoms and there aren't any side effects. I use NeilWash and you can find it just about anywhere, I get it at WalMart.
Thank you for your kind words, I will continue to look for somebody who can HELP with my quality of life. Some of the doctors make it worse because of all the tests, expenses, and no help. I won't quit trying though. Best of luck to you and your granddaughter.

Joann

Lolly,

Thank you for replying. I was clueless on the tonsil issue. I have also checked the web and found no info regarding tonsils and cvid link. This new doctor just acts like I know nothing of the disease, she makes me feel as if I "want" the disease. Nothing can be further from the truth...I just have it! The immunologist in CA that diagnosed me was in the infectious disease department, maybe I will look that way too. The problem with finding a good immunologist (at least for me) has been that most of them handle primarily asthma patients and won't be familiar with diseases such as cvid. Thanks for your help, I appreciate it!!
Joann

There are two docs on the Immume Deficiency Foundation board of medical advisors who are located in Colorado. They are both well known, respected and very fluent with CVID.

Erwin Gelfand, MD
National Jewish Medical and Research Center
Denver, CO

and

Richard B. Johnston, Jr., MD
University of Colorado School of Medicine
Denver, CO.

Good luck

Mark,

Thank you so very much for the information for these two doctors. I am going to call them both today! I hope I can get into one and see what they can do. Thanks again for th great resources!

Joann

JCroft5 Even though your story sounds identical to mine, it still breaks my heart that anyone else should have to be treated this way. I too have been told again and again that the doctor "couldn't" help me. When "wouldn't" is a better way to describe their attitude. Over 80% of my doctor visits last year were one time visits with the doc not willing to take me on as a patient.It infuriates me because they knew full well what I was coming in for, their office could just come out and say. "this doc is a prick and doesn't take anything but the easiest of cases." Wouldn't that be helpful?

I always feel that when I am writing about my woeful tale, that others think I'm whining or that I have a bad attitude. But then again that is only someone who hasn't experienced our medical system in recent years. Like the first infusion place that was to administer the IVIG. Within five minutes of the IV going in, I began jerking wildly, and funny sounds came out of my mouth. The techs got mad and said I was acting out. But they just wanted to push the serum through in two hours and you cannot rush immunoglobulines. People will react many different ways, but with this infusion there is a high chance of having a reaction. After all, it takes 1000 people donating blood serum just to make up one dose for our infusion. That means that we are having to physically tolerate the immune systems of a thousand people in a very short time period. Its almost like a transplant.

There are many things you can do. I only know of a few. 1. My infusion takes six hours. IF they try and push it through in five and a half hours, I will react badly.I was told that the majority of reactions are because the infusion is rushed.
2. You can try another brand. Supposedly it doesn't make a difference, but it did for me.I went from completely unable to tolerate the treatment, to having only about a four day down period afterwards.
3. They run a line of saline in the same line with the IVIG. IT is like two lines coming into one IV. Basically they are diluting the gamma.
4. The night before I start hydrating. Make sure you are good and plump. Also I start with the bendedryl the night before. Right before the infusion I still take two benedryls and tylenol. There is a lot of inflamation going on.
Even all that I do, I still fall unconscious within ten minutes of starting the infusion. I stay unconscious until they withdraw the IV.This has happened for the 28 out of 28 infusions I've had.

I can't find an immunologist either. I had an ID doctor prescribing but then last month he dropped me too. Have they no conscious? No reason, but I've had the feeling for a while that he was bored with treating me.
Did you know that while you are searching for an IV source, you can get the gammaglobullin in injections. I was giving myself the injections in the interum which was just a script from my regular doctor. I think BayGam is the maker. It's not a replacement for the IV's , but it will do in a pinch to keep your head above water.
Email me if you have any more questions. I wish you the best.
pipsywiggins

I live in San Antonio, TX if anyone knows of good immunolgist.
pipsywiggins

Joann,
It is not easy living with CVID but Shelbie manages it. She just said last night that being only 13 they might find a cure for CVID in her lifetime. Her biggest question now is whether or not she would pass it on to her children. She loves children but said she wouldn't put a child through what she goes through. She has many years but does think about it. That and having good enough insurance on herself when she goes off her Father's. IVIG is very expensive and her Dad's insurance only covers 80%, they pay the difference. There is a pending bill in our state senate to help families pay for IVIG. Hopefully, they will help but if not, she still needs it and knows it.She knows her limitations but has a fairly good life. The brittle bones restricts most activities but she does what she can and just enjoys being with her friends. Biggest problem now is getting the IV in,her veins are rolling. They are looking for another route to go. Now she gets hers on weekends so not missing school. Misses enough as it is.
Like I said before, it is all worth it. All her lung problems went away now we only fight the sinus. She sprays with Afrin alot. She has massive nose bleeds from time to time but can pack her own nose! She makes my arthritis in my back nothing compared to her pain. And she continues to smile. Best of luck to you, I will check back to see how you make out. Shelbie also knows she has to leave duPont at 21 and isn't looking forward to that. Finding good doctors is hard. Take care of yourself. Don't give up. Carol

Joann,
Forgot to mention, Shelbie had her tonsils and adnoids taken out when she was five. Adnoids grew back, took them out again. One big problem she has is the terbinates in her nose [filter system]. With all her allergies, they would swell and ENT would go in and cut them back. They had to switch ENT's due to change in insurance, next one totally cut out her terbinates...no filter system in nose which makes her sinus problems worse. Tried allergy shots for awhile...did nothing. Of course, none of her baby shots worked so we have to be careful with communicable diseases. School nurse is great, lets us know if anything is "going through the school". Then she has to come out for awhile. Like I said, she is a trooper and knows everything is necessary for her survival. Most people have no idea how sick she really is and she doesn't tell. Again, good luck. Carol

This is my first time on this site. My 17 year old daughter has just been diagnosed with CVID. We are trying to decide between the infusions and the Vivaglobin injections. Does anyone have any advise? My daughter refuses to talk about it, talk to me or my husband. She is even telling us that when she turns 18, she will refuse to have any treatment. After reading all your stories, I'm afraid that if she has a bad reaction, she just might do that. So far we have been very lucky, she has never been hospitalized, and her most common complaint is ear infections and coughing, which both respond very well to the antibiotics. We are hoping this is all just a bad dream, and it will all go away. HA HA. Has anyone out there had a good experience with these infusions or injections? She is planning on going away to school next fall, and the thought of that scares me to death.

Johnna,
Don't panic. Let her read all the information on CVID. Webmd has alot of information. She has to realize how improved her life would be with the infusion. Shelbie takes herpre-meds and does fine. Only one time was there a problem, new infusion nurse gave her the gamma too fast. Shelbie needs it slow. Takes about five hours now. She needs more as she grows but cannot have it any faster. Anyway, this nurse gave it to her in hour and a half. Shel starts with 20 minute flush, receives gamma, another flush and she is done. One thing we did was get her a portable DVD player and she watched movies during gamma. Now with her pre-meds she sleeps but still takes it along. I see many children who bring them along. I won't go into detail about the reaction to the infusion too fast, but it never happened again. Shelbie's only complaint now is giving up the time to do the infusion. Other than that, she doesn't mind it. She goes every 4 weeks and her levels are checked every 6 months. Not everyone reacts. Shelbie has alot of other medical problems so she is not typical. The difference between before IVIG and after is tremendous. Any questions please email me at mom-mom-6@comcast.net Even she can email me and I can talk to Shelbie about talking to her. Shel is very mature and can probably talk to her better than we can. Shelbie's life is still very active and she just considers IVIG a part of her routine. Your daughter will too once she feels so much better. Where are you located. It would be great if you were close. Please stay in touch. We can answer alot of her questions. It's scary but doesn't have to be. Please contact me any time. Carol

Hi Joann,
My boyfriend has CVID, just in re to your confusion about the no tonsils thing, he does not have any. Went to have them removed which I think they do to help it a little, and found that he actually had none! This would make sense though as your tonsils are there to try and limit the amount of infections hitting your throat and chest, as most CVID patients have quite bad lung problems! And as a reply to Johnna, your daughter is just reacting like any other teenager. My boyfriend used to have that kind of infusion, but is now able to do it himself at home, it is called subcutaneous immunoglobin and is done over one hour. It is so much easier as it takes out the whole waiting around a hospital for a day. He can also relax at home and I generally help him do them which is okay. He has been doing this for over two years now and has never had a bad allergic reaction. His worst reaction has been a headache, sore joints or being very tired, which are easily treated with paracetomol and some sleep! Don't worry to much to the reactions as the worst ones are not as common as you would think! The news of CVID is fresh to you and your daughter and over time she will realise how normal of a life she can lead. My boyfriend does everything I do, and acts like any other normal 21 year old! The only downside is he gets tired quicker than others or might have a chest infection but he is still really well, and most people don't know there is a thing wrong with him. Im not saying its easy to deal with, but it gets easier and you will soon realise as will she how easy it is to lead a normal life! Best wishes

YOU REALLY DON'T WANT IM GAMMAGLOBULIN. IT REALLY HURTS. I got IM injection before IViG was available, that was 25 years ago and I still vivly remember.

A doctor in Texas. There are two on the IDF medical panel.
William T. Shearer, MD, Ph.D.
Texas Children’s Hospital
Houston, TX

and

Stephen Miles, MD
All Seasons Allergy, Asthma & Immunology
The Woodlands, TX

I've heard both of them speak and got the feeling they are both very good.

IVIG is the way to go.

To the original poster, I know this is an old thread, but how has your luck been with finding a doctor?

My former doctor was Annie Lent at National Jewish. She recently left to go into private practice and moved away from Colorado. I am about to lose my Fellow to graduation so I am "shopping" for a new doc.

National Jewish has been just a tremendous place to be involved with. They are really nothing short of spectacular in thinking about thing and diagnosing conditions. For my entire life doctors could not figure out the various problems I had. Most of my stories are similar to yours and others on here. I was there for 15 minutes with my first visit and the doctor had a pretty good idea of what I had, CVID. After some tests, it was confirmed.

I hear Dr. Gelfand is definitely the one to talk to there, though my current assigned doctor is Dr. Katial.

I also have a referral from my Fellow for Dr Kirkpatrick over at University of Colorado.

Anyway, sorry this post is about 5 months late, I don't visit here much.

Hi,

Funny, Dr. Lent was my Doctor at National Jewish also, but she's the one who told me that she didn't think what I have is CVID, but she didn't know what it was. All of the tests done at National Jewish show damage from CVID, lungs spleen, sinus, etc. Another doctor that I saw in Denver (after Dr. Lent left) is Dr. Naomi Fieman and she has great bedside manner! She was not comfortable ordering ivig or scig for me though as I'd had a reaction in the past. I finally (after 4 months of communicating with his nurse) went back to California to see my previous immunologist at UCI to get a subQ infusion. I was there for a week and my doc did confirm that I DO infact have CVID. I also had my levels checked before going there and my Igg, Iga and Igm were all very low as well as the sub levels. After insurance issues I did not get the subQ infusion like scheduled (frustrating as traveling with CVID is exhausting!) I came home and received a letter in the mail that I was approved for the vivaglobin (the subQ infusion). I've called around here and no infusion center will do my infusion (the doc wants the first two done in a center just in case, then I can do them at home unless the doc has privelages at that hospital/center. So, I have to go back to CA to get two weeks of infusions and if all goes well I'll do them at home. I really hope this works, I am SO ready to get back to my life and it really feels like everything is on hold right now due to the non-stop illness etc. Sorry this is so long, but I know how hard it is to find a doctor, many immunologists only see people with asthma related illnesses (the first 4 I went to wouldn't take my case w/CVID). I agree that National Jewish is great, but it just didn't work out for me. Before deciding to go back to CA to see my old doc, I tried to get an appointment with Dr. Gelfand but he was booked 3 months out. I also got a referral to Dr. Kirkpatrick and called his office, but he only works one day a week and the office has to review your labs before making an appointment. But from what I've read about him, he's very experienced in our area of illness though and could be a great option.

Best of luck to you in your search. I do highly recommend Dr. Naomi Fieman and she was fairly quick to get in to see. Keep me updated if possible. I do not know anybody personally with this illness. If you want to email, I'd love to see how things work out for you. My email is JoannTC5@yahoo.com

Wow, what a roller coaster you are on with all this. Sorry it has been so trying. I still have unanswered questions that puzzle my docs.

The human body is indeed interesting that nothing is just cut and dry.

I still need to follow up and get a new doc, I was promised that I would hear something by my next infusion about who will be working with me. That will be in a week roughly. So far I have heard nothing.

While I have loved NJ for their great scientific and diagnosing abilities, their communication has always been one of my larger gripes. Since they are research based they sometimes don't understand that patients are needy and are often anxious to find out what's next.

Overall this whole thing has been a learning experience not only for me, but for all my doctors. Most have not treated patients with this diagnosis so they are learning a lot as well. In terms of being better doctors, listening to their patients more and I hope they learn that when someone presses them to answer the tough questions they aren't afraid to send you to someone that can even if it means they wont get the insurance money.

I will look into Dr Fieman, I hadn't heard the name so I will take some time to research. Good luck and once I find a doc I will send you a message and let you know how it's going.

Colorado, where are you located? NJ or CO?