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1776
04-10-2007, 06:13 PM
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.

patricia983
04-10-2007, 07:55 PM
I am so sorry to hear about your neice has she had a spinal tap ? has she been to a als clinic ? where does she live? I feel as you do its probaby not als Did this happen after a shot at the doctors office My symptoms started after a DT shot

1630
04-10-2007, 08:57 PM
all this being true.. why would you want to convince yourself that your niece has ALS? I'm not actually looking for an answer from you.. I'm hoping that you know enough about ALS to question this for yourself. In any event I'm very sorry that you and your extended family are going through what is obviously a heart-wrenching experience. I hope you get some answers to your questions and I wish you all the best in the future.

1776
04-10-2007, 09:25 PM
Nope, we have not been to an ALS clinic. I recommended it to them about 14 months ago, but they pursued a pediatric neurologist, who ended up not being able to make a diagnosis. Yes, she has had 3 LPs; 2 of them showed a mild CSF-pleocytosis + a high titer for mycoplasma pneumoniae. The titer was 1:640 (normal range = <1:10). However, she has had no cranial nerve neuroapathies nor cognitive changes. They live in NW Iowa. I'm assuming by "DT" shot you mean Dip-Tet? I don't think she had a shot prior to that. We did look into the thiemerosol-mercury in flu shots, but there was about a year-and-a-half from the shot to symptoms.
They did find a lot of mold in her blood and in the house. After moving out of their house and IVIg's, there were no improvements. However, I believe the mold did play a role, to what degee, I don't know yet. I think the bacteria and the mold interacted in a way that changed the clinical course.
Paula-Jane, as far as convincing myself this isn't ALS- I don't know what else it could be other than than infection. Maybe that's what you were eluding to, but sometimes a person needs validation from others who know what the heck they're talking about, so it was good to hear that from you.
One thing that I find very interesting throughout all of this; she steadily progressed from April, 2005 - Feb. 2006. She was vented about this time last year. From then until November, 2006, she was able to eat and talk without problems. Then, after starting Zithromax, she ends up producing massive amounts of mucous running from her nose and in her throat. She can't swallow anymore and it's getting tougher to understand her. It's strange that for 8 months she steadily progressed to not walking and then the progression suddenly stopped. Then, after 8 months of eating and talking we begin Zithromax and she can't anymore.

She tested negative for antibodies to myelin basic protein twice and all ganglioside antibody testing was negative. The only thing she tested positive for was antibodies to acethycholine. We thought it was Myasthenia Gravis at one time, but that got ruled-out. I know that a researcher in Texas discovered a neurotoxin associated with mycoplasma pneumoniae, so I'm wondering if there's something to that.

patricia983
04-11-2007, 08:09 AM
Regarding mycoplasma why not give her doxycyclin in high doses she has nothing to loss I hear it has been show to work if she indeed has mycoplasma

1776
04-11-2007, 02:50 PM
Well we chose not to go with Doxy because of concerns our doctor had with giving it in children and adverse reactions with fungal infections, of which we found a lot of mold in her blood. I think though that Doxy or Minocycline is a definite possibility as a rotating anbitiotic when the time comes. Thanks.

patricia983
04-11-2007, 04:46 PM
My neuro has agreed to give me a blood test for mycoplasma and if I am poss a month of doxy and high levels of B12 injectionsWhich was my idea not hers She said she doesn think it will help but she would never discouage anything because she doesnt know everything and I have nothing to loss I have ALS for 8 years and now it is really moving it was only speech but this year its in my arms and its way worse then it being my speech I love to cook I cant anymore I cant do my makeup my hair Soon I wont be able to feed myelf I drive walk and eating and breathing is good I feel like a am waiting around to die and I want to try what ever I can. i will keep you all informed Pat

1647
04-11-2007, 05:49 PM
Pat,

It makes me sad to read that you feel like you are waiting around to die. You are here for a reason, and I for one am certainly glad you are! Kudos to you for wanting to try everything! Good luck, I hope some of it helps. Leslie

982
04-11-2007, 06:28 PM
Patricia- Sorry to hear things are moving faste for you these days. Cindy