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.