Medical mystery

COEUR d'ALENE - Cassondra Alonzo sat down in a chair in the living room of her family's Coeur d'Alene home last week, and her four children quickly surrounded her, climbing into her lap and onto the ottoman at her feet.

Alonzo's husband, Jose, had just helped his 32-year-old wife navigate the stairs. He supported her, holding her as she walked weakly across the room.

"You know that show, 'Mystery Diagnosis?' That's what I feel like," Alonzo said.

Her health has been failing for several years, but none of the many doctors she has seen have been able to pinpoint a cause. And without an accurate diagnosis, medical professionals are unable to find a treatment that will ease the symptoms that are wreaking havoc on Alonzo's body and her life.

She had to quit a job she says she loved, working at Tesh, Inc. with adults with developmental disabilities.

"It was a real calling for me. It's what I want to do if I ever get better," she said.

Doctors have ruled out myriad diseases including multiple sclerosis and HIV/AIDS.

"I have some rare immunodeficiency, autoimmune or genetic disorder," Alonzo said.

One of her most troubling symptoms is shingles, a very common condition experienced by nearly one out of every three people in the United States, according to the Centers for Disease Control.

But Alonzo's experience with shingles has been anything but common.

Most people who get shingles experience one episode. In rare cases, a person may have shingles two or three times in his or her lifetime.

Alonzo has had 32 documented cases of the condition in the past two years.

"There's not a day that goes by that I don't have a blister on my body somewhere," Alonzo said.

Shingles is caused by the same virus that causes chickenpox. It remains dormant in the body after a person recovers from chickenpox and can reactivate years later, causing shingles. It causes a painful rash that develops into blisters that eventually heal.

"It's worse than having a baby," Alonzo said, of the pain.

She's also dealing with resulting scar tissue damage that's affecting her nerves and causing pain in her arms and hips, and is now affecting her ability to walk.

"They say if they can stop the shingles, and the blisters, the nerves can regenerate," Alonzo said.

Another condition Alonzo battles is neutropenia, an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections caused by bacteria.

Alonzo said that her health history going back about 13 years shows a pattern of an inability to fight infections.

There was a period of time where she contracted MRSA 30 times. After each of her pregnancies she developed serious infections, and nearly died once when she became septic.

Several years ago, before the shingles started occurring, Alonzo began developing abscesses in her mouth, causing her to lose most of the teeth.

"At 32, I get to end up with dentures," she said. Not long after Alonzo and Jose married, Jose developed a disabling and painful form of psoriatic arthritis. His condition is now generally controlled by medication, but he cannot work.

The family relies on Jose's disability checks to pay their rent and utility bills.

Friends and family members have tried to lend a hand, and have held several small fundraisers to help pay Alonzo's medical bills.

Now Alonzo has what she considers her last chance for a diagnosis, or at least a treatment that will keep the shingles at bay. Specialists in Seattle have given her some hope that they might have some answers, but it will take money to get there, which the family doesn't have.

As she spoke from the chair in their living room, her husband, Jose, reached up and wiped a tear from his wife's eye.

"I guess if I don't get help soon... time's running out," she said.

Alonzo estimates that in addition to whatever may be covered by Medicaid, the travel and treatment in Seattle could cost more than $15,000.

"I'm a Christian woman, and I pray, and I know that God has a plan for me... but my four kids. I just want to be a mom again," Alonzo said. "I need to know that I've done everything I could, used every resource possible."

Anyone wishing to help Alonzo can make donations at any Global Credit Union in Post Falls or Coeur d'Alene. Friends have set up several websites where donations can be made online: www.helpcassondra.com or www.gofundme.com/helpcassondra.