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Old 04-10-2007, 07:13 PM #1 (permalink)
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City: Indianola
State: IA
Country: US
Posts: 3
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Default Child with ALS? Lyme's? Mycoplasma?

I’m new here, but I wanted to share some of my thoughts. It’s been almost 2 years since my niece’s symptoms began. In April, 2005, Alexandria (Alex) was playing softball, basketball, and riding horses. By December, just 8 months later, she was confined to a wheelchair. Two months later, she needed a ventilator. Seeing a child go through this is about the worst thing I can think of.

Her western blot test was negative (no surprise), but it was very late. There were a couple of lyme-specific bands that were positive though. But, it was done shortly before she needed the vent. So, it was well established in her nerves. The QRIBb test, had been done a few weeks later where she tested the highest positive at 1:128.

I realize many scrutinize Dr. Whitaker and Dr. Mattman, but anyone who does their research or knows anything about bacteriology know they are brilliant. I believe if someone tests that high, it is very unlikely to be a “false-positive”.

I’m not sure if Alex has Lyme’s Disease, or Neuroborreliosis, but I do know she does have Mycoplasma pneumoniae. She tested “high positive” three times by both serology and in the CSF at two different facilities. There is significant evidence that mycoplasma infections can lead to this type of neurological sequellae. Certainly this is possible, other examples are; Campylorbacter jejuni leading to Guillain-Barre’ Syndrome, Chlamydia pneumoniae being a causative factor in Multiple Sclerosis as well as atherosclerosis and now you can’t watch t.v. without seeing a commercial detailing human papilloma virus being one of the causes of cervical cancer.

She is an identical twin, so how does ALS occur in one child and not the other? How can ALS occur in someone so young? Her immune system isn’t even fully developed yet. Prior to this, I had never even heard of ALS occurring in such a young age, without some sort of genetic predisposition. Of course, with research, I found this does occur. I don’t believe this can occur out of the blue and I don’t think it is a result of autoimmunity. I believe what she has is “atypical” and something has caused it. The autoimmunity theory for her does not make sense. All of a sudden, one day her immune system begins to attack the motor neurons – nope, I don’t buy it. Her twin sister, by the way, is asymptomatic. Not one neuromuscular test came back abnormal. The EMG’s were inconsistent. The test for antibodies to acetylcholine, however, was positive.

I believe whatever is causing this is by mimicry and/or direct invasion by a series of co-infections. Which ones, we don’t know. We may never know. But why don’t doctors accept the most likely “link” between lyme and other bacteria? In all likelihood, I believe one reason is that they are scared to. The second reason is doctors and researchers need overwhelming evidence to accept it as medical fact. Nobody is really ready to stick their head out there.

Sure, there’s research out there that states Lyme’s and Mycoplasma causing everything BUT ALS; meningitis, encephalopathy, meningoencephalopathy, transverse myelopathy, polyradiculopathy, peripheral neuropathy, mononeuritis multiplex, multifocal motor neuropathy. If it can cause this, why couldn’t it cause an ALS-type of syndrome.

Just some of my thoughts.
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