Medical Questions > Conditions and Diseases > Immune Disorders Forum

Billy's Disease, mystery illness. In hospiital 12 months!!

Our story is one of courage, inspiration, hope and still in need of help. It all started Dec. 30th, 2007. My son-in-law Billy and the rest of the family was celebrating Londyn's 2nd birhtday (my granddaughter). Billy didn't feel well, and we all thought it was just a virus. I have one child Nikki, and she is married to Billy. Together they have one child Londyn. Billy also has another beautiful child, Rylie. Billy continued to get progressively ill, on the 3rd visit to the ER, he was admitted to critical care. He has never returned home. He has been in 5 hospitals since that time, 3 of which are major University hospitals. He has now lost 100 lbs, he started at 240 lbs,he is 6 ft 1inch tall. He was strong and healthy prior to getting ill. What we know is he has a b-cell immunodeficiency, not primary in nature. The implications of this is that he has life threatening infections one right after another. He has no immune system. He has severe protein enteropathy. He is emaciated, malnurished, has malabsorption issues as he has sloughed off the entire mucosal lining of his intestines. He has had hundreds of tests, r/o many of the most obvious diseases, too numerous to count, and many very rare diseases in fact. He has seen every specialist imaginable, we currently have one of the leading immunologist in the nation consulting on Billy's case. No one knows what is wrong with Billy, they have never seen an illness of this type. My inspiration is Billy and Nikki. Nikki has been by his side from day one. She slept in a chair or air mattress for 8 months to be at Billy's side. I drove weekly from Tulsa, Ok to Columbia Missouri to take Londyn to see her mommy and daddy, he was there several months (approx. 6 hr drive). And then the same when Billy was in St. Louis, Missouri, Londyn and I did this for 8 months. Billy has been in Oklahoma City, for the past 4 1/2 months which is a much shorter commute, only 1 1/2 hour drive. I am still in Tulsa, Oklahoma. Nikki had to give up their home, and now she and Londyn stay with me in Tulsa. Nikki now makes the drive daily Wed.-Sunday with Londyn and I keep Londyn on my days off so she can stay with Billy.
The strength my daughter has shown through all this is phenomenal, Billy has been in and out of ICU many times, so close to death. But she has stayed right there in the thick of it, encouraging Billy, supporting Billy, keeping the Dr's informed as to Billy's history this past year, which is a full time job,and tracking his care to be certain his medical management is appropriate. This is a must, I know because I have been a critical care nurse for almost 25 years. Nikki continues to be Billy's inspiration, keeps him fighting. Encouraging him daily, writing bible passages on his eraser board. We have decided we must find a Dr. somewhere that has either seen or treated someone like Billy. We have been told this may just be "Billy's disease", a first, and he would be written about in medical journals. Nikki has been Billy's voice, as he is to weak to speak for himself, and many times couldn't when on ventilator (life support). Nikki has been Billy's strength, as he is too weak to fight for himself. Nikki and I have stuck together on pursuing answers for Billy with sheer determination and diligence. Even when a certain Dr suggested we might consider letting him go. We now are taking Billy's story to the people, via internet, Youtube, TV stations, forums like yours, writing letters to politicians, and people of influence. We know someone, somewhere will be able to help us fight for Billy and have answers to his illness. We want Billy home. My daughter is near exhaustion now as Billy has been in the hospital over 12 months, but she won't slow down. She is Kansas now so she can do an interview with another TV station who is going to feature Billy's story tomorrow. We will find the answers for Billy.
We are Christians, and are trusting God for Billy's healing, whether divine healing or with the assistance of Dr's. We will NOT give up.
Billy cannot eat as he has chronic/acute Nausea, vomiting, and diarrhea. He is maintaining on TPN, which is total parental nutrition (feeding him in his veins), as he does not tolerate tube feedings after numerous attempts. By the way he does have a peg tube.
I am sure I have left out some vital information, but too much has happened in a year to get it all in hear. Billy cannot roll over in bed without assistance, he can't walk, and can sit up in chair for brief periods. Make no mistake his mind is intact. But he is so depressed he rarely makes eye contact or attempts to speak.
Please if you have any information that might be helpful please share with us, or if you know someone who might. Or if you would like to assist us in campaigning for Billy, to help us in the fight of our, Billy's life. We wake up each day and encourage ourselves and each other to keep this fight going. Thank you so much if you took the time to read this very long journal entry. You can google "billy's disease" or Billy Anderson to read more about our fight.
God Bless each and everyone of YOU!!!
vp4billy
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replied January 26th, 2009
I'm assuming this has been ruled out ...
... but what about Behcet's disease?
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replied January 26th, 2009
Billy's disease.
Junniper2012,
You are wrong... Smile
We have not considered this illness, I have to research it. It has never come up before and I have researched many, many disease's. Thanks for comment. I will look this up tonight. I appreciate your sharing this.

Vp4billy...
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replied February 4th, 2009
Billy's Disease
Anybody tested him for Whipple Disease? It's pretty hard to dx.
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replied February 4th, 2009
ndcne
I have considered this and reviewed this disease many times... and it just doesn't seem to fit, but one never knows. Medicine is a science and we have to continue to look at this illness from all angles. I appreciate your comment and suggestion, it means a lot to me. Thanks.
Vicki
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replied February 9th, 2009
Billy's Disease
God Bless you and your family. I live in Maryland and I was watching the news this morning and I came across your story. Sometimes God puts us in situations to test our strength, and this is what is happening to you and your family. I wish you all the best and I pray for you all that everything gets better. Although, I cannot help you with trying to figure out what maybe wrong with Billy because I'm a college student studying politics, but if you do need any type of help please do not hesitate to write to me through personal email, everyone in Maryland is rooting for Billy and we pray he gets better. Keep your head up and stay focused and put God before anything and everything, then you'll see everything will start to fall into place on it's own.

With love,
Sana.
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replied February 9th, 2009
sanab
Good morning honey. Thanks for taking the time to read Billy's story and write. I appreciate it so much. Billy's story is in known in Maryland, really? We have done a lot of media blast these past few months... Did you say you saw his story on TV this morning? We only have his story on 3 different TV stations, but they were all fox affiliates, and can be picked up anywhere in the nation. We are trying to keep our focus on God for sure, He is our strength. Are you on facebook? We have a support group there for Billy I would love to have you and your friends and family join, and a cause "prayforbilly". We are begining a campaign of asking all Billy's supporters to write President Obama. You are very sweet and kind to write. Thanks for your encouragement, it does help.
God Bless you and yours!!!
Vicki
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replied July 20th, 2018
I know this post is old but I just came across it today while doing research. And I thought I would post this anyways because if anyone else is doing research for a loved one this may help. My sister in law passed away from

Mitochondrial neurogastrointestinal encephalopathy disease.

As of 2011 there were only 200 recorded cases but the more research I do, I think there are may more cases but they are misdiagnosed. If you are reading this any your story is similar to Billy's please have your doctors check in to MNGIE.
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