Billys disease baffles doctors...

hI!!!
i am a new memner here, and i would like to ask for your proffesional help. i don't know if you have heard about Billy, an african American in the USA whose condition is undiagnosed for 11 months now, and he is slowly dying having lost more tha 40 kilos in weight and being confined in bed... please take some minutes to read his medical information that was created by his wife Nikki...and spread this message around, as any little detail would help him gain his life back...
the story was recently published in CNN (the link follows)
http://edition.cnn.com/2009/HEALTH/01/14/billy.irpt/index.html

To Whom it may concern:

* I am Nikki Peterson, William Anderson's wife and I am forwarding the information you requested regarding my husband, Billy. Billy has been in the hospital for the past 11 months, Starting at Joplin, Missouri, to Columbia University (Columbia, Missouri), to Barnes-Jewish (St. Louis, Missouri), and now in Oklahoma City at O.U. Medical Center for the past month and half. My son-in-law is a 29 y.o. african american, who has been relatively healthy, working and happy up unitl the onset of his symptoms Dec. 30, 2007. He has 2 children, one being Londyn who is 2 1/2 y.o. and another child Rylie who is 4 y.o. I will list below Williams symptoms from the onset as well as diagnosis worked up in chronological order to best of my ability.

Dec. 31, 2007
note: William has had crampy abd pain off and on previous couple yrs, to the point of doubling over in pain...for which he did not seek treatment.

2 weeks prior to dec. 31, numbness and tingling in his feet, and intermittant joint pain.

General Malaise and fatigue, bloody diarrhea stools, frank blood. No pain associated. Went to ER, and was sent home.
Jan. 6th, admitted with Fever 104 degree's, chills, malaise, diffuse arthralgias, and profound cervical lymphadenopathy.

* ARF with dialysis for at least one month
* pan cultures were all negative.
* mrsa in stool twice prior to admission 1st week of Jan... in 2 different cult.
* antibiotics with chills, no improvement, temp up to 105.
* lumbar puncture neg. for West Nile, cryptococcal antigen, and fungal antigens.
* bone marrow bx, Jan. 11, no clonal expansion of cells and no malignancy, no fungal, acid fast bacilli, or bacterial noted.
* Cervical and retroperitonea-Inguinal lymphadenopathy, as well as hepato-spleenomegaly based on ct scan.
* cervical lymph node bx Jan. 16. Pathology demonstrated a histiocytic necrotizing lymphadenitis which can be seen in kikuchi-fugimoto disease as well as in SLE. numerous CD8 positve t-cells were found...
* Renal bx.. revealed acute tubular necosis, no evidence of vasculitis or immune complex deposition
* subsequently went into resp. failure and was intubated day of onset of renal failure and then later had tracheostomy. (1st day post extubation after 20 days, pt had diffuse aveolar bilat pulmonary hemmorhage)
* c/o severe abd. pain, US only revealed adenopathy in gut.. enlargement of spleen and liver
* .lactic acid dehydrogenase and haptoglobin in peripheral smear stains were consistant with HUS. pt underwent plasmaphoresis (this was cont. for next 21 days).
* also anemia with multiple transfusions PRBC'S.
* diarrhea has continued off and on this past 10 months..
* Was started on high dose steriods..
* feb. 8th transferred to university of missouri with FUO, ARF, RESP. FAILURE AND HUS.
* CMV POSITIVE APRIL 30TH, AND ZERO CD20 CELLS AT THIS TIME, PT THEN STARTED RECEIVING GANCYCLOVIR IV
* EGD revealed gastric atrophy, duodenal coble stones. bx revealed duodenitis.
* ct showed thickened small bowel, and left renal hematoma
* cont. with tachycardia, fever, and low electrolytes..
* Gastroentestinal issues persistant, with chronic diarrhea, pt was receiving tube feedings, and wt loss, then started on TPN
* per colonoscopy a Rectal bx showed acute and chronic inflamation
* pt was neg. for hepatitis panel, HIV. pt did have low titer P-anca and low titer ana.
* repeat bx of colon showed active ileitis and chronic cololitis.. then was started on methotrexate IM... pt showed improvement but developed Pan cytopenia, and profound neutropenia... and started fevers again.
* DVT developed in right vena cava, green field filter placed.
* pt had candida in blood and c-diff in stools, after infections treated pt started on Remicade with some mild relief.
* 2 weeks later developed another GI Bleed pt restarted on steriods and second dose of remicade given
* since no GI improvement was transferred to Barnes-Jewish hosp. in St. Louis April 22nd
* On APRIL 23RD, WAS FOUND TO HAVE IGG LEVEL OF 412, a repeat test was done to reveal IGG level of 400. No CD19 CELLS AND UNDETECTABLE IGA
* DX WITH B-CELL DEFICIENCY WITH NO GENETIC ORIGIN. PT THEN STARTED ON IVIG
* CONT. CHRONIC ABD PAIN, DIARRHEA, FEVERS.
* PT DURING THIS TIME DEVELOPED ANOTHER FUNGAL INFECTION AND C-DIFF POSITIVE.
* PT WAS RECEIVING DILAUDID PCA WITH OTHER BREAKTHROUGH PAIN MEDICINE OFF AND ON FOR PAST MONTHS
* REPEATE COLONOSCOPY SHOWING CHRONIC INFLAMMATION AND ULCERATIONS HAD APPEARED TO RESOLVE, CONT. SMALL BOWEL THICKENING.
* JULY 18TH DISCHARGED TO SNF, UPON ADMISSION BLD CULT. DONE, 2 DAYS LATER TEMP 105, AND FOUND TO BE SEPTIC.. CULT. GREW OUT GM NEG. BACILLI, AND CANDIDA TROPICALIS... PT ADMITTED TO St. Johns hopsital in Joplin Missouri on July 21 to ICU with dx of sepsis.
* DX with pneumonia bilat. lobes with psuedomonas also, subsequently back into resp. failure and re-intubated and later tracheostomy for second time. pt was on pressors at this time, levophed, dopamine and fevers 104... cont. c/o abd. pain and diarrhea
* Transferred to O.U. Medical Center Aug. 16th.
* after 5 weeks tx infections resolved...
* sm. bowel showed on ct showed strictures.
* colonoscopy showed coble stoning and thickening of sm. bowel.
* lab tests revealed neg. p-anca and ana
* bone marrow bx showed no b-cells but an abundance of t-cells
* pt was started pentassa,high dose IV steroids and tacrolimus drip and cont. IVIG
* AT EACH HOSPITAL HIS GALBLADDER HAS BEEN US AND SHOWED SLUDGY AND WITH STONES.

William cont. to have chronic abd. pain, diarrhea, and is currently as of yesterday starting to run low grade fevers, tachycardia, n/v......pt has been eating soft diet for past 2 weeks.
William is emaciated, has lost over 100 lbs... has had chronic hiccups. William is not tol. po intake well and cont. to have freq. episodes of N/V after meals. TPN cont.
William has had intermittant elevated liver enzymes, loss of skin pigment...

My greatest concern besides getting William getting better is that this current hospital was trying to dishcarge him to home. He has yet to demonstrate an ability to hold down po intake, nor has he this past 11 months.. he has been on T.F. OR TPN this entire time.. William has never been able to tolerate tube feeding after mulitple attempts at each hospital. My fear if they try to discharge William to home he will die. He had a medical card until Aug., and it was discontinued due to him receiving a disability check. I am certain the discussion for discharge is about lack of insurance or ability to pay.

SUSPECTED DIAGNOSIS:
CHRON'S DISEASE
KIKIUCHI FUJI MOTO DISEASE
VASCULITIS
PROPHYRIA
SLE
CVID
HE HAS BEEN FOUND NEGATIVE FOR HEAVY METAL POISONINGS, AND MOLD POISONINGS, LYME DISEASE, LYMPHOMA, HIV.
PULMONARY HYPERTENSION
SCLEROSIS OF BILIARY TRACT

Thanks so much for taking time to review this Memo, I am so sorry this is so lengthy, but a lot has happened in the past 11 months, that I am sure we have forgotten to mention.
I am ever so appreciative of any assistance or suggestions you might have. We currently do not have an immunologist seeing William, however he does have a transplant dr.

My cell phone # is 316-304-7719
My daughter, Nikki Peterson cell # is 620-875-3731
He also has a myspace page with many pictures available
http://www.myspace.com/billyandnikki1
Also his story is posted on CNN ireports at
http://www.ireport.com/docs/DOC-160154
Our email address is nikkibilly1@yahoo.com

Sincerely,
Nikki Peterson