Tuesday, June 16, 2009

Alex's Battle

Friends, I have come across a story of a brave soul. A girl, who's story is so similar to Lori's, the only difference is that she is too young to diagnose with ALS. "ALS" sufferers are processed and stamped and pushed out of the medical community to somehow come to peace with death. This is the worst form of these horrible infections which continue to be ignored. Please, I beg for myself and for her mother Lori, if you have any information that can ease the last 4 years of hell on earth for this family please contact us. Below is a short description and a youtube video that the family assembled. You can contact Lori, Alex's mother at alexsarmy@hotmail.com

In spring of 2005, Alex began having difficulty with movement of her left arm. At the time, she was in the middle of softball season, enjoyed riding horses, and playing with her friends. In late May, she noticed her left leg started to lag behind. We thought the worst. We went to Omaha where she tested positive for Mycoplasma pneumoniae and started monthly intravenous immunoglobulin treatments, or IVIg's. At first they told us it was Guillian Barre Syndrome, but then decided it wasn't. Unfortunately, the condition progressed. We then followed up at Mayo Clinic in August, but this time they gave us a diagnosis of motor neuron syndrome. The treatments they prescribed didn't seem to help either and we were off again- this time to St. Paul, MN. Things weren't so clear after all of the tests as the neurologist there seemed to be unsure of a diagnosis. She did test negative to SOD1 and SOD2 genes where they told us this can go along with ALS. All other genetic testing has been negative. We continued IVIg's. Then, in November, 2005, we journeyed to Houston, TX to an immunotoxicologist. Even though there were significant amou

nts of stachybotrys mold and other mycotoxins in Alex's blood, the treatment remained the same, and we continued on with, this time, weekly IVIg treatments. We left our house and everything in it to get out of the environment that may have been causing this to Alex. She also tested positive to acetylcholine receptors there as well which we thought could go along with myasthenia gravis.
Unfortunately, she progressed further and the paralysis went to her right side. In December, she lost her ability to walk. In January, 2006, we were off again to Springfield, MO where she was clinically diagnosed and tested positive for Lyme Disease, (although the test performed was not FDA-approved). She recently tested positive for a common co-infection associated with Lyme Disease called Bartonella. Later, (approximately in 2007-2009) we would also discover several heavy metals in her body such as mercury, nickel, aluminum, cadmium, and tungsten. Arsenic in her hair sample. Her condition continued to worsen and started to affect her breathing muscles. On February 23, 2006, doctors told her she wouldn't make it through the night.
She did make it...and she is still with us. On March 14th, we air-lifted her to Omaha, NE where shortly thereafter, she had a tracheostomy-ventilator and G-tube inserted. We spent the next 5 months in 3 different hospitals.

We still search for a compassionate and passionate Drs to help seek a diagnosis. Everyone we write chose to ignore Alex. We have struggled to find the help Alex deserves to help save her life.
A Dr in Colorado who was misdiagnosed with ALS and was positive with lyme flew to Alex and clinically diagnosed her with lyme as well. This Dr has since reitred.
She did test positive for HHV-6 (virus) and pro-inflammatory markers were all normal. There are so many confusing things about Alex's illness which makes it so difficult to proceed with proper treatment. Alex has lost the ability to speak and she can no longer swallow. She can commnicate by twitching the corner of her mouth to yes questions. All of her nutrition is through a tube in her stomach. In the fall of 2008, she was tested for more motor neuron testing which the Dr's were confident would be abnormal but came back negative. She also tested negative to Tay-Sachs disease. All neuromuscular genetic testing has been negative.
Dr's we have spoke with believe this stemmed from 1 of 3 things: genetic, a toxin, or a virus. Since Alex has an identical twin and all genetic testing has come back normal we believe it is one of the other 2.
Today, after 4 horrifying years Alex continues to fight everyday with her heart and soul praying someone can help her figure out this mystery and nightmare.
If we only knew for sure what was causing this, we would know how to fight it, but nobody will take the time and effort to commit to help her.

Monday, June 15, 2009

In Lori's Voice

Saturday, March 15, 2008

Snow patrol

Driving back from a specialists' office three hours away, my mom and I crested the big hill, the one where the bay spreads out below and you know you're home. This song (hit play) came on the radio as we silently looked out the windows at melting white snow and cold air and the glinty last remnants of sunset on the bay. It was that time of night where everything exhales blackness, and the blackness slowly absorbs the last light.

The sky acutest at its vanishing, as Wallace Stevens wrote.

The doctor ordered more IVs, different IVs, and said there is a school of thought among some physicians that Lyme causes what the French call Maladie de Charcot. But no one knows. Our motor neuron maladies are more mysterious to modern science than AIDS and cancer and the moon, so mysterious that even accurate diagnoses elude us. So we're left to lay still, minds intact, as our voluntary muscles stop working.

My mother arrived three weeks ago and now helps me move from thing -- bed, chair, bath -- to thing. My boy has been a trooper but the night before our trip to the new doctor, he broke. I tried and tried to stand and pivot into bed to lay next to him and read One Fish, Two Fish, Red Fish, Blue Fish, but again and again, my legs wouldn't lock. I told him I was so sorry, but I couldn't do it. He began sobbing.

Try again! Try again! ONE MORE TIME! he cried over and over. I just...couldn't. As much as I wanted to. I finally grabbed him from bedside and held him and sang him into quiet. He finally talked. Maybe the special doctor will make you better.

And maybe he will. The special doctor ordered an array of new drugs, said such regimes have been successful in halting symptoms in his patients who've been diagnosed with ALS, and one's been alive and kicking for 12 years, when most with that dx are hit in the lungs and die in two to five years, starved for air.

So there is hope.

My mother and I believe this. I looked over at her as Snow Patrol played on the radio, and we both were crying. We both looked back at the water and snow. Then I felt her warm hand slide into mine, and we drove the rest of the way home like that, saying nothing, as night fell on the bay.

-Lori Hall-Steele