Choice Between National Jewish and Mayo Clinic

[Susan KBG]

Hi Everybody,

I'm newly diagnosed with CVID by a Clinical Immunologist in Colorado Springs and she's trying to figure out what to do with me, including treatment options. She wants me to go to National Jewish in Denver, 60 miles away, for a "complete workup." She said they have the best of everything, including labs and experts in the field on immunology. 

I have another option, to go to the Mayo Clinic in Rochester, MN for the same purpose. I grew up in that part of the country and visit twice a year and could easily arrange a "complete workup" there rather than National Jewish. It's common for family members and friends I know to go to the Mayo Clinic for diagnosis and treatment plans for a wide range of ailments, so that's why I thought of this option. I grew up hearing that the Mayo is the best place to go for anything.

Does anyone have any opinions about this? I have no experience/knowledge about immune disorders, so I thought I'd ask all of you. I'm impressed with what I've read on the forum so far and am excited to be connected with all of you.

Thanks!

Susan KBG

[gillie]

Hi Susan. I guess that your lack of replies is because most of us here are based in the U.K., not America. I'll do my best to help. I certainly think that you need to follow up your immunologist's advice to get further tests done. I imagine that you want to know exactly what's going on with your immune system so that appropriate treatment can be offered to you before your health takes a nose-dive! As to where to get those tests done, I think you have to go to whichever centre you feel the most confident with. It sounds as though both are well thought of and will give you satisfactory answers, so it boils down to going with your preference and/or what's easiest for you. It sounds as though you'll have to travel a fair distance to either centre.
My own diagnosis was much more cut-and-dried than yours', as by the time I was tested, I had 0.04% of my immune system left, [IgG] so had hardly any resistance to anything!Fortnightly infusions have kept me virtually infection-free for 13 years now. That's how effective it can be. I wish you all the luck in the world, and hope that I've been of some help.
Best wishes,
Gillie.

[Susan KBG]

Hi Gillie,

Thank you for your reply. I didn't know that most members of the forum were from the U.K. So, it makes sense that I haven't had replies with specific recommendations. Sorry about that.

Your comments and advice are the first that I've had with anyone that understands the issues, other than my doctor, and I'm sincerely appreciative of your empathy and encouragement.

I think you hit the nail on the head when you surmised that I want to figure out what treatment is best for me BEFORE my health takes a nose-dive. My immune system is still working pretty good, and so I feel very fortunate to be in this position. My IGG's are about 475 and IGA's about 70 and IGM's borderline low. I get milder infections that don't land me in the hospital, so I know I am one of the luckier CVID patients. I do wonder if my numbers could stay the same forever or could they drop rapidly... I just don't know. My heart goes out to you and others that didn't find out what was wrong until your immune system wasn't working much at all and the severe consequences of that.

It's very uplifting to hear that the infusions have worked so well for you. It makes me feel that if I ever have to do that, there is a very good chance that it would help me. And, for that, I feel most fortunate. There are a lot of diseases out there that don't have decent remedies available.

Thank you again for your time and thoughtful reply.

Best Regards,

Susan

[judymac]

Sept 1, 2015 15:52:45 GMT Susan KBG said:

Hi Everybody,

I'm newly diagnosed with CVID by a Clinical Immunologist in Colorado Springs and she's trying to figure out what to do with me, including treatment options. She wants me to go to National Jewish in Denver, 60 miles away, for a "complete workup." She said they have the best of everything, including labs and experts in the field on immunology. 

I have another option, to go to the Mayo Clinic in Rochester, MN for the same purpose. I grew up in that part of the country and visit twice a year and could easily arrange a "complete workup" there rather than National Jewish. It's common for family members and friends I know to go to the Mayo Clinic for diagnosis and treatment plans for a wide range of ailments, so that's why I thought of this option. I grew up hearing that the Mayo is the best place to go for anything.

Does anyone have any opinions about this? I have no experience/knowledge about immune disorders, so I thought I'd ask all of you. I'm impressed with what I've read on the forum so far and am excited to be connected with all of you.

Thanks!

Susan KBG

I've been to both National Jewish and the Mayo Clinic. They have a similar set up: you are assigned to a doctor who serves as the team leader. Your experience will vary greatly depending upon the doctor to whom you are assigned. I was assigned to an Infectious Disease doctor at National Jewish (even though I have severe CVID) because I have chronic pseudomonas and aspergillus pneumonia. I was impressed by the pulmonologist, ENT, and rheumatologist that I saw at NJ. If any of those doctors had been my team leader, I believe it would have been a helpful evaluation well worth the time and money. The infectious disease doctor was a nightmare: she wasted my 2 weeks at NJ by chasing after her pet theory that vocal cord dysfunction was causing the throat closing and trouble swallowing when I take antibiotics rather than anaphylactic reaction. So, while I was sent to NJ for their opinion on how to treat my infections given life-threatening antibiotic allergies, the problem was never addressed. I saw an immunologist at NJ and wasn't particularly impressed with her acumen. She told me that my cd19 deficiency was caused by Rituxan exposure. While I did take Rituxan and it likely contributed to my immune deficiency, there is no evidence in the research literature that Rituxan can cause a drop in immune globulin levels 5 years after exposure. Additionally, my Ig levels were low before Rituxan exposure, so how could it have caused a deficiency? In my experience, the Infectious Disease and Immunology Departments at NJ have doctors who don't listen well, don't read your records thoroughly, and really dislike patients who ask questions.

[s162216]

Hi Susan, whilst the forum is mostly comprised of those from the UK, a good 40% probably of the members are from elsewhere in the world.

Over the past year and half or so we have had more and more members from the USA registering, so you should find that at least someone will likely be able to help if you have a US specific question. We deliberately chose to make the forum open to all as most PID issues are the same everywhere, and we see no reason to restrict it to any country (unlike most forums and Facebook groups).

From my limited knowledge and research into the two above centres, both appear to be very similar in how they operate and both are Jeffrey Model Foundation PID Referral Centres so the should know what they're doing. I would look into both and decide based on what you think is best, but I imagine you'll be fine with either.

Sam.

[Susan KBG]

Thanks to all who responded. I will keep your advice in mind when I decide where to go and keep you posted.