I'll have to keep you posted. I'm still in the process of getting a treatment plan. My dr. presented my 'case' at a conference and my diagnosis is so rare that she needs to get more feedback from another dr. So, I'll let you know what I find out in April.

And what is your diagnosis? GLIP? is it Granulomatous Lymphocytic Interstitial Pneumonitis? Is that what I remember you posting in the other group?

Hi! After 18 loooong months, I was finally given the diagnosis of C.V.I.D. with a side of G.L.I.L.D. It all started with what I thought was a lump in my breast, but it was actually a lymphnode. When I went for a biopsy, the ultrasound caught a glimpse of my lung which had some strange looking stuff in in it. I was tested for TB, Valley Fever, Cat Scratch Fever, cancer...you name it. I had two PET scans done, 3 lymphnode biopsies. One of which appeared to be malignant and I was told I had stage 4 lymphoma. The pathologist who was testing the lymphnode for a "type" of cancer ultimately said it wasn't lymphoma - thankfully! All along I've gotten weird illness' - meningitis, salmonella, typhoid fever. It was kind of a joke! I gave myself a much needed break - I figured all the testing was making me feel worse! Now the docs are back at it. My specialist at the ILD Clinic at National Jewish gave me the new diagnosis. I'm scheduled for another bronchoscopy because of a large spot in my lung that appears to be a 1cm lymphnode - probably a granuloma. I also will see an Immunologist there. I don't know what the future holds - but the internet has not been my friend... I don't like the information I get, or I don't understand it. I was so happy to see this blog that Kelli started --- THANK YOU!! I will update WHEN I finally get a plan... until then, any advice as to what I can expect?

HI there and welcome!!! National Jewish was a BLESSING for me. I had a team of doctors - Dr. Evans Fernandez was my lung dude, Dr. Gelfand my immuno and I saw a Rheumy there who bowed out in the beginning as he didn't feel I was having autoimmune stuff or if I was it was not nearly as serious as the GLILD. They put you through the wringer at NJH - VERY thorough. I had testing done every day from 8am to 5pm for 1 week. Swallow tests, EKG's, bronchoscopies, PFT's, you name it. Don't be alarmed if you have to wear oxygen there because of the altitude, I freaked on the girl because she told me I would have to wear it for life, NO I don't just when I'm there lol. Take someone with you if you can because they twilight you for the bronch. Ask ALL the hard questions, write them down, take a journal. The thing that concerned me was the lung specialist was very to the point about how serious this disease was but the immuno (much older) was much more lacksidasical about it. I tend to listen to the lung guy who stated he has a LOT of people with this, has small children and can relate to needing to be around for my daughter. So you may get some differing opinions on daily living. I'll have to go back and credit them for SO much....I am back to work full time, my hair is growing back, and I do most things normal people do, I just sanitize everything first haha

Just wanted to add an update on my treatment plan. I went to see a hematologist in April and she and my pulmonogist wanted to try me on cyclosporine. So I am taking 150 mg twice a day. Cyclosporine is normally used for people who get organ transplants and the cyclosporine helps keep the T-cells down so they won't fight off the new organ. Since I have an overabundance of T-cells in my lungs, they are hoping the cyclosporine will 'kill' some of them off so my lung capacity will increase and my shortness of breath will decrease. So, they are using it in an experimental way. It is not something that I will have to be on long term and they are hoping that I'll see results in a few months. I'll have my first CT scan of my lungs since being on the cyclosporine in a few weeks and they will hopefully see an improvement. If not, there is another medication they have in mind (just not sure what it is). So, I'm hoping I can be in a medical journal someday helping someone else with the same problem!

I've been with National Jewish for 18 months now, I was referred to them by my Rheum (my boss' brother -- when we have a funny story moment, I will share that experience!). I was initially referred to a Pulm doctor - James Good (very old guy....) - who looked at me like I was a freak of nature just like every other docter does. I was referred by him to Dr. Jeffrey Swigris in the ILD Clinic. Dr. Swigris is the one who made the C.V.I.D. / G.L.I.L.D. diagnosis. I live in Denver, so I'm very fortunate to have this hospital in my own backyard - so to speak! I think it is great that you could just get it all done in a week... it sounds like it was tense - wish I could just get 'er done!! I'm irritated at the moment because since I live here, my appointments seem so far out. I don't have the consult for the bronch until July, and the immunologist until August! Seriously!?!? I called them to check on that.... in the meantime, I'm on a "waitlist" to go sooner. I want to move on! Thank you for your doc's names - maybe there is an opportunity for me to request them since they have obviously seen you. It's so awesome to have people know what is going on and to understand the magnitude of what I'm going through and will be going through! P.S. You mentioned that your hair is growing back.... did you have to take medication or therapy that made you lose your hair?

We don't know why my hair fell out as I wasn't on any meds at the time - my body went CRAZY - I posted pics on here - swelling, significant memory issues, widespread pain, weird rashes...wild. I posted pics of everything I could. I was convinced I had Lupus...It does help to have people know what you are going through - its so scary! Yes you are very fortunte to have them so close. It took about 4 months for me to get there. It was a very long wait when I was so sick....seemed medically negligent to make someone wait so long, but it worked out. Would be great if you could see the same docs...I had some of the nurses tell me what an outstanding team of docs I had ;)

So here is a weird thing that is happening to me now....my latest blood work has shown a high white count and a low kidney function. I had to go consult with a Nephrologist. After talking with her, I am being tested with more blood work and an ultrasound of my kidneys. She suspects that I could have either "GN" - Granulomatous Nephritis, or a blockage - possibly by an enlarged lymphnode pressing on important tubing. "GN" has to do with my auto-immune system "picking" that organ to manifest. Depending on the outcome of the blood/ultrasound, I may need a kidney bx. I'm not sure if you've heard about that type of biopsy - but quite frankly it sounds awful, and I'm freaked out!! Is anyone else sick of being "interesting" to doctors? I think I should submit my case to "House" to become a storyline - maybe I could make some money off of being interesting!!

Awww Andee I'm so sorry :( please keep us updated!!! ((hugs))

Well, I have somewhat of an update... The kidneys are definately involved now. I've had numerous tests, and just had another CAT scan of the abdomen again today. I swear I'm glowing with radiation! With any luck I will become a superhero with the capabilities of being two places at once!! Hey -- I can hope....

Anyway... the granulomas are also in my kidneys - this is very rare (naturally,..), only about 2% of people with CVID or GLILD has this manifest in the kidneys. I have to have a kidney biopsy next week. The CAT scan today was to see where all my giant lymphnodes are in my abdomen to be sure nothing is pressing on the kidney before they for the biopsy. The biopsy will hopefully tell the extent of the inflammation due to the granulomas. If it is bad, then I have to start on steroids sooner than I had wanted to. I'm not sure how this will affect my lung biopsy in July since I'm sure the steroids will also work on those granulomas.

Has anyone else had their disease also manifest in another organ? How about your lymphnodes? Does anyone have enlarged lymphnodes as a symptom, as well? They seem to be getting bigger on me, and I feel a rather large one under my rib cage in my abdomen - really weird. I get freaky with those because there is a high probability that lymphoma turn its ugly head eventully with this disease.

That's it for now -- I should have more next week after the biopsy. I hope you are all doing well, I think about you all a lot.

Andee

Holy cow Andee! I had no idea the granulomas could manifest in your organs...gees girl ((hugs)). Please please keep us updated.

Hi everyone,

I came across this page while googling GLILD. I'm 18 years old and was diagnosed with CVID almost a year ago in October after months of feeling sick and fatigued and dealing with ITP (low blood platelets). My medical journey started out with horrible side pain which turned out to be an ovarian cyst that had ruptured. My doctor discovered my platelets were dangerously low and sent me to the Hematology unit of Children's Hospital WI. However, one of the ct scans taken of my ovary showed strange abnormalities on the lower part of my lungs that were visible in the image. The hematologist said it was probably just an infection and would clear but when I had a follow up ct three months later the spots had gotten significantly worse, multiplied and doubled in size in some areas. I began to work with a pulmonary specialist who did a bronchoscopy to try and get a diagnosis. It came back negative for infection but showed lots of inflammation. That's when I was sent to Rheumatology and one of the doctors reviewing my case suggested I be tested for CVID which ended up being the right diagnosis and I was sent to the Immunology clinic. However, it took a full year for them to diagnosis my lung disease. They put me on prednisone in December for 5 months which was HORRIBLE, completely screwed up my body and made me feel 10x worse than I already was feeling. It boosted my blood counts but the results of my follow up ct scan in June showed it did nothing to help clear the lung nodules which was extremely disappointing. I met with my doctor the following week and he said that I had no choice but to undergo a lung biopsy which they had been hoping to avoid but found crucial because of the state of my lungs. I had my biopsy 3 weeks ago (which has been a terribly painful recovery) and the official diagnosis is GLILD. I'm going to begin an 18 month treatment plan of Rituxan and Imuran starting at the beginning of October. I'm hoping my insurance will be approved sooner so I can just get this treatment underway and praying that it will help me get well again. This has been such a tough time to go through something like this because all of my friends just left for college and I am stuck at home chronically ill. Hopefully I can get to know some of you and your journey no matter what your age or diagnosis is!

-Shannon

you can add my facebook http://www.facebook.com/#!/profile.php?id=712185732
i check it pretty often :)

I hate to say WELCOME as if its a great thing, but if you found us you were probably as desperate for info as I was when I created this support group. There are not many of us so I'm glad you are here.

I too did the high doses of steroids for only 3 months, and most of my nodules "resolved". Having known several people with GLILD I knew that steroids were only a bandaid and that the nodules would likely come back. I also feel the steroids did more harm than good. I just turned 40 and gained 20 lbs and have pretty bad muscle atrophy and can barely climb the steps to get to my desk every day. They did make me feel better (I was practically bed ridden and was out of work on disability), but the wild mood swings probably damaged my 7 year old for life. I swear, I will let the GLILD kill me before I take steroids again...it was just too much.

Here's what I know of the Interstitial Lung Diseases: Some are more common and easier to treat than others, some are more dangerous than others. Steroids are usually the first recommended treatment. I've heard good things about Remecaid, Rituxan (for b cells) and Imuran (for t cells). For me the symptoms are crazy: Extreme fatigue (right now I work/bed/work/bed), pretty much feel like crap but can't pinpoint anything...then once we go past these initial symptoms my hair starts falling out, rashes (like Lupus), swelling, etc. What I've read and been told is that it should be treated aggressively as well as ANY infections should be taken very seriously as to prevent it from going to the lungs which can be dangerous.

I've also learned to listen to my body. I knew something was wrong because I am not lazy and was only managing to work everyday and feed my child at night, and the cats and that was IT, I had to go to bed. The doc in Los Angeles wanted to wait 9 months to do a ct scan. In my opinion I would have been dead, in my family docs opinion I would have been in respiratory failure by then. I thank GOD I pushed to get a CT scan and voila, more nodules, NUMEROUS new nodules and they are growing quickly. I am prepared to go to war if National Jewish does not act quickly and treat this with one of the 3 meds i listed above. If I go on disability again, I will lose my job this time. Wow I just wrote a book ha sorry. I actually got some great slides at a presentation for lung disease, I guess I never thought to up load them...or did I? Geez, another symptom, memory issues :( Here's the link let me know if you can't see them :) There are 8 links (8 slides)

https://docs.google.com/leaf?id=0Bx8YUqKh3wAvYjc0YjQ0MTQtY2NmNS00MTEzLTg0OWEtZjIwNmNiYmUwNmRi&hl=en_US&authkey=CPnzr5MP

https://docs.google.com/leaf?id=0Bx8YUqKh3wAvZTQ5NDg4NmMtYjViZS00Y2FhLWI1YzctOWYwMzA0MzljNjYx&hl=en_US&authkey=CIOoieoF

https://docs.google.com/leaf?id=0Bx8YUqKh3wAvNTE5YTk3ZDEtZGE3My00YTgyLThmMTktN2M1ZjRhNDFmNDAy&hl=en_US&authkey=CPjo_5UG

https://docs.google.com/leaf?id=0Bx8YUqKh3wAvNTVlZjdlN2EtZDU4My00N2Q4LTg5YzUtOGNiNzZmYzc4NjVj&hl=en_US&authkey=CMCK-v0K

https://docs.google.com/leaf?id=0Bx8YUqKh3wAvZTUwMDdlNDEtOTY1OS00Mjc5LWE3Y2EtMGE4MDUwMGFlODU4&hl=en_US&authkey=CPuc-uwE

https://docs.google.com/leaf?id=0Bx8YUqKh3wAvYTkwMTgxZmEtMDdiNS00OTFhLWE3OTUtMjljNTc0NmE1YTYx&hl=en_US&authkey=CPPk__4L

https://docs.google.com/leaf?id=0Bx8YUqKh3wAvYTZmMjVmZTMtMGU4OC00MGI2LTk3OGUtMjIzZWRjYjRiOGM5&hl=en_US&authkey=CNPf6YIO

https://docs.google.com/leaf?id=0Bx8YUqKh3wAvNTcwYjM4YTItNTVjZi00NTVlLWI4MjMtZDBjMDE3OTI2NjIx&hl=en_US&authkey=CPOJrLAB

OMG'sh I forgot to say, we also have a CVID support group here too!!

http://www.dailystrength.org/c/Common-Variable-Immunodeficiency/support-group

Kelli -

Thank you for posting those slides!! Good info! I hope you are starting to feel better. I'm sorry you are having such a hard time right now. I am convinced that because I am a young, mostly healthy looking person, that I'm not taken seriously when I'm having the exhaustion, or even the chest pain. You keep advocating for yourself - you HAVE to! If all else fails, I will picket NJH with you! :-)

Shannon -

I'm very sorry for what you are going through. I find it interesting that you also have ITP. Are they controlling that with just the steroids? I came down with ITP when I was 25 when I was pregnant with my son. They tested me for lupus, leukemia, etc. etc... so I was on Prednisone for much of my pregnancy. The ITP seemed to resolve on its own, but then relapsed about a year after that baby was born - so their answer was to remove my spleen. That did the trick, I now have oodles of platelets - like 550,000! Anyway, it did cause another issue - I no longer have spleen to block me from a lot of infections that normal people can fight -- which is double awesome with my immune disorder.... since then I have had typhoid fever, salmonella, meningitis -- name it.

I have GLILD and they found it after I had just run a triathlon - crazy, huh? My lymphnodes all over my body are at least 2cm in size or bigger. I have a new one in my lung that they just did a biopsy on in June. I've been told I had stage 4 lymphoma, only to have them back track. That was a nice call to get as I was Christmas shopping for my kids...

I was diagnosed recently with CVID, and though I do have some SubClass deficiencies, they have retracted that diagnosis and have replaced it with Castleman's -- mostly because of the lymphnode involvement, as well as my kidneys have joined the party. ITP also played in to this diagnosis.... so keep that in mind. Castleman's is like CVID on dope. It appears that I will get lymphoma at some point.... I've also just been tested for ALPS - Autoimmune Lymphoproliferative Syndrome -- rare, naturally.

Doctors are afraid to treat me.... I'm convinced of that. I've been treated with inhalers and Prednisone when I get my bi-annual pneumonia. I also have Albuterol for when I exercise. Nothing to keep it "at bay", or to "treat" it though. I'm continually an interesting test subject -- it gets old. Of all doctors, the only one I can get to light a fire under the other doctors is my Nephrologist (Kidney doc). I follow up with her monthly and she keeps my case open at Mayo.

Here's the thing... like Kelli said, it comes and goes. The exhaustion, the nodules, the doctors opinions. Right now I'm very fortunate to feel pretty good. So, I have to go with it - that means I am active and I get my body strong for the next time. The doctors will look at you and your diagnosis' and want to run tests and still shrug their shoulders.... you are "interesting", my dear! :-) Just remember they will tell you how sick you are, they will scare you, then retract what they say a million times. Go off of how YOU feel. If YOU feel good, then do what YOU feel you can do. I run, I do triathlons, I chase 4 kids around, I work.... it isn't pretty sometimes, but I just have to do it. There are things you need to be smart about, obviously (like don't lick a kids runny nose, and keep lots and lots of sanitizer and Clorox wipes handy).... this is a progressive disease so you will feel like crap on occasion. Just be your own advocate with your doctors - when you feel bad AND good.

I hope you feel better soon and that your treatment helps you to regain your young energy that you deserve!

You have friends here that understand... Kelli has been my saving grace.... it's nice that people understand.

All the best,
Andee