It’s been three months since I last wrote a post.  That second EMG went well.  It did not show denervation.  A muscle on my calf appears as though it is atrophying but no denervation and thus, I have avoided the ALS diagnosis.

The University has recently given me the diagnosis of Motor Neuron Disease / probable Primary Lateral Sclerosis and the “clock” has begun.  90% of PLS patients will develop Amyotrophic Lateral Sclerosis, ALS, Lou Gehrig Disease.

Because of the small amount of Lyme antibodies in my spinal fluid, we also chose to travel to Minnesota to see a Lyme “literate” MD and be tested with the full Western Blot for Lyme.  Coincidentally or not, I did test positive for Lyme in four bands as well as one Indeterminant.  If the indeterminant band had been positive I would have been CDC positive.  I had a tick bite around the summer of 2008 which was insufficiently treated with doxy.

All across this wide web, there are whispers and sometimes shouts of Lyme “induced” motor neuron disease.  Is it real or supposition or the hopeful dreaming of patients who have no real hope in ALS and seek something else?  I have no idea. I’m not especially learned, not especially wise, and not especially gifted in these areas.  But this I know…. Try we shall.

We’ve had many ask so what do you have?  ALS?  PLS?  Something else?  Lyme?  Truth is we don’t really know and this is the best we can explain:

I have been diagnosed by the U of Iowa as having Motor Neuron Disease.

It is really less of a “disease” than a catch-all of symptoms –  Motor Neuron Disease comes in two flavors – either you have Primary Lateral Sclerosis OR you have Amyotrophic Lateral Sclerosis.

The difference:

PLS – means your UPPER motor neurons are degenerating. We absolutely know, with no doubt, that my UPPER motor neurons are beginning to die. There was never any question of this.

ALS – is different in that your UPPER AND LOWER motor neurons die off. We will know if I have LOWER motor neurons dying when my nerves begin to die and muscles atrophy in my leg (and eventually both legs, both arms, chest, etc.) IF that happens then they will change the diagnosis to ALS.

What now?

Well, when you have UPPER motor neuron failure but NOT lower motor neuron failure they give you a temporary diagnosis of PLS. This is what I have right now. They know that most patients (90%) will develop LOWER motor neuron failure but there are those that stay with just UPPER motor neuron failure. Those that just keep upper motor neuron involvement get a permanent diagnosis of PLS. Those that become both upper AND lower involved get the new diagnosis of ALS.

What about the Lyme?
Okay, so the confusion here is that we think this is Lyme.
We KNOW U of Iowa is correct. I have PLS. BUT we also know that many doctors across the country believe that there is a CAUSE for PLS/ALS – it is not random. Some people get it more than others – usually you are over 50/60, men get it more than women, and military people get the most of all.

There are a lot of theories. Vaccines take a big chunk of blame. Mercury in fillings take another chunk of blame. It is the idea that some people are more sensitive to toxins and thus as they absorb heavy metals from vaccines & amalgam fillings, their motor neurons weaken and die.

And then there are those who believe that Lyme causes SOME ALS/PLS.

These doctors are gaining more and more support.

So if it is Lyme, it is curable right?
Lyme is VERY curable….  – In the EARLY stages. You let those nasty little Lyme bacteria grow and get stronger and they will try to kill you. Lyme is a bacteria, an especially bad one – a spiral shaped monster called a spirochete.

As they reproduce and get stronger they choose an area to attack. For some it is the heart. For some it is joints. It seems more rarely, the little beasts chooses the brain. This is my case IF this is what caused my PLS and it is hard to cure because antibiotics have a challenging time crossing the blood/brain barrier and killing all of the spirochetes.  There are also researchers who believe that the tick transmitted a nematode at the time of the bite and that the nematodes harbor the Lyme, protecting it from antibiotics.

Yes, I know a dozen people who have Lyme and have been cured. I’m happy for them. Unfortunately, I know absolutely NO ONE who has neuro Lyme and I know no one who has had MND and Lyme and been cured. So this is a shot in the dark. Even my Lyme doctor in Minnesota has never had a Motor Neuron Lyme patient.

We are very nervous because what she has ordered for me could make me far worse. Or it could help – a lot. By far worse we do mean death. So it isn’t just a matter of, “Geez Kelly, take the antibiotics. There are patients who took these antibiotics for Lyme (ceftriaxone) and it did kill them and/or accelerated the Motor Neuron Disease.

So please know, that while we are making these choices, we take none of them lightly and we are weighing all of options. It might look like we are doing nothing. That is not the case.

It might look like we should do something else. Please know that we are doing the best we can with the situation we have been given.

The drugs they want to give me are $850 EACH DAY. Blessedly, my insurance is going to pick up a good chunk….. For a short while. But, after that , they will stop. There is no “approved” drug treatment for neuro Lyme so they are under zero obligation to pay for it. And unless someone knows of a half million job for the hubby, we are making the best decisions we can under these circumstances.

I FIRMLY beleive that God has His eyes wide open. He did not turn away for five minutes or blink while I got this disease. I absolutely know that He chooses to ALLOW us to go through trials for His own glory. This is supported in scriptures, that His believers will go through trials and tribulations and that these will change and mold those people to be more like Him.

I am requesting prayer.

Specificially:

Courage. We are forbidden by God to be anxious. We are to turn everything over to Him in prayer and thanksgiving.

No Bitterness – this is really hard for us.

The best case scenario for me currently, according to the University, is long term paralyzation. We hope this is just PLS and that it will take the next twenty years for me to be fully paralyzed. Or, that Lyme treatment can stop this.  Right now I am gardening, playing, spending time outside, doing projects.  I have people saying things like, “I’m so glad you feel better,” and “Wow! Maybe the doctors are wrong.  You’re doing great.”  Ya’all, I never felt BAD. 😉  I feel like ME – okay, maybe a slightly weaker version of me, a little unbalanced version of me, but still me.  And I surely am not going to sit on my tailfeathers and get weaker by lack of use.  Plus?  Plus if I know this is my last year to garden, or my last year to play with my kids, or my last year to………..  Why would I choose to sit on my couch and fuss?  Nope.  No.

Obviously we would love for me to be fully healed, God willing. But we also have to talk to the kids on their level about Mama being sick and make a lot of hard decisions. No one feels this more than my husband, myself, and these precious kids. Pray for all of us please.

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