Autoimmune patient's health decline halted by plasma-based therapy

Rorey Smith suffered from fatigue, brain fog, and muscle weakness before subcutaneous immunoglobulin (SCIG), which is a plasma-derived therapy, helped him reclaim his life from a debilitating autoimmune condition.

Throughout his 40s, Smith felt more tired than others his age, and though he visited several specialists, no one had answers. Nearing 50, Smith’s health slipped further. He received a diagnosis of Lyme disease and completed a 6-month herbal protocol but was still tired and had a fast heart rate, skin darkening and burning, pricking, and stabbing skin pain. He then took a two-month course of antibiotics, but the neurological symptoms were more pronounced, along with extreme sleepiness, visual and memory loss, and diminished strength.

“I started to develop more weakness in my legs and arms to the point where carrying groceries was almost impossible. Picking them up from the car and carrying them in was a lot,” said Smith. “And then every weekend, I would sleep all weekend long, and it didn’t matter how much I slept, I was still unrefreshed and exhausted.”

Smith lost feeling in his toes and endured muscle cramps that brought him to tears. Even worse, his memory declined.

“This is how bad it was. I supervise a group of attorneys, and I would look at them in the face, and I couldn’t remember their names,” he said.

Smith sought help from a neurologist who ran laboratory tests, MRIs, eye exams, and cognitive evaluations. For one test, doctors asked Smith to draw 8 o’clock, and he drew the hands incorrectly.

“The doctor was trying to rule things out, and he got those results back, and by this time, I was in really bad shape,” said Smith. “I told him if we don’t figure out what’s going on with me within a month, I don’t think I’m going to be walking.”

Smith’s doctor diagnosed him with chronic inflammatory demyelinating polyneuropathy (CIDP), a rare autoinflammatory disease in which the body attacks the myelin sheath, or covering, of the nerves. When the myelin is damaged, it slows the signals to the nerves. People with CIDP have muscle weakness, tingling and burning, tiredness, and loss of coordination. Smith also tested positive for anti-GM1 antibodies, which further destroyed his nerves and caused memory loss.

The doctor prescribed intravenous immunoglobulin (IVIG) replacement therapy buffered and stabilized with glycine, an amino acid that promotes brain stimulation, assists in immune response, and decreases inflammation. Twice a week, a nurse visited his home to administer the IVIG. After four months, Smith gained some strength back.

At seven months, Smith switched to subcutaneous immunoglobulin (SCIG) replacement therapy buffered and stabilized with L-proline, a major amino acid found in cartilage and important for maintaining skin, muscle strength, tendons, joints, bones, and connective tissue. Smith’s recovery accelerated.

“Within two weeks, I was getting all my strength back. I couldn’t believe it,” said Smith, who’s been using SCIG for a year and a half.

Smith was diagnosed with two autoimmune conditions after his CIPD diagnosis and recently developed bronchiectasis, a chronic lung condition that causes mucus build-up and infection. The CIPD has also weakened his ability to breathe efficiently.

Not only has SCIG increased his physical abilities, but it also helped strengthen his diaphragm to mitigate problems caused by bronchiectasis.

“I believe it has saved my life. I would have been in substantial decline in part because I have the anti-GM1. I, for sure, would probably be in a wheelchair, and I’d probably have more advanced lung disease than I have. I don’t think I’d be able to take care of myself. I’m pretty sure of that,” said Smith, who now works from home virtually.

SCIG provides Smith with the strength and energy to do activities he enjoys, like taking a trip to the mall or going to a movie.

“It has given me my independence and my ability to work. I can go out and do things if I pace myself. I can engage in life,” said Smith.

Smith encourages plasma donation so that people like him who need it for treatment can contribute to the community and live full lives.

“I would tell somebody who was thinking about donating that you may not know who this person is, but trust me, you are making a difference in their life. You’re allowing them to work. You’re allowing them to have friends. You’re allowing them to participate in society. All these wonderful things. And in turn, they’re helping somebody else, so there’s a domino effect,” said Smith.

Learn more about how plasma is used to treat CIDP and a related disorder, Guillain-Barré syndrome. 

Find a plasma donation center near you and make a difference for Smith and others living with CIDP.