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Today sucked. - Update #201


BlsdMama
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This is such good news! If you have to be diagnosed with one or the other, I'm hoping you have Lyme!

The update:

 

I think my neuro is a lovely man. He might be a little pessimistic. I had a CLEAN EMG on Monday. Clean. 100% Normal.

 

So he tells me this fiasco could be early ALS but there is NO motor neuron damage (denervation) or compensation (reinervation) found. Which, IMO and Dr. Google's, makes that little assumption very unlikely. My doctor says he has seen it happen before but it's rare, maybe PLS.

 

Frankly, I am thinking Lyme. Lyme has been misdiagnosed as ALS before and my thoughts are if I look like a jackass and I'm totally wrong and it *is* ALS, so what?

And seriously - if I had ALS I would be the 1 in 165 million to get it before forty. Then I have a slow moving form? Even more rare? AND I have two clean EMGs? That would make those stats so off the chart rare. I refuse to drink the kool-aid. Or at least not until it's being poured down my throat.

 

 

So the update?

 

1. I have a clean EMG.

2. I (currently) do NOT have a diagnosis. :)

 

3. I have an appointment with a Lyme doc in Wisconsin in early April. Yes, yes, I do. (dance)

 

All I want for Christmas is Ceftriaxone and it is looking like an April Christmas.

Edited by reefgazer
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I am so happy to read your post!!!!! I can't figure out why they won't just give you the antibiotics and see if they work.

This. What's the deal? Why won't they?

 

I don't post much, but I've thought about you a lot. It feels weird to hope you have Lyme disease. I will hope for Lyme, but pray that it all goes away and you are healed. :)

Edited by BearWallowSchool
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I am so happy to read your post!!!!! I can't figure out why they won't just give you the antibiotics and see if they work.

 

Because long term antibiotics have risks.  I was on antibiotics for 6 months straight one year.  The next year I was on antibiotics for 7 months straight.  It was very hard.  It kills good gut flora even though I was very religious about taking high doses of probiotics separated by a couple of hours from the antibiotics.  Antibiotics used long term often stop working.  Then you have to go to another one - not just in the same class of antibiotics, but one in another class.  I ended up going through 8 different classes of antibiotics. In my case, because it was active infections that were getting worse, they were running out of options.  At the end, my body was just reacting to any antibiotic because my immune system was overreacting big time.  We finally got a hold of it, but it was a very dicey time.  And I had to have other treatments which were very painful to help support my body so that it would finally kick in. 

 

I'm now on medications for my immune system which have made a world of difference but my team of doctors (because by the end I had four doctors following all of this and helping to support me) are very alert to even the slightest chance of me having infections again.  My gut is only now starting to recover a couple of years later.  My liver is also only now starting to get out of the worrisome range in it's numbers.  My doctors still monitor me every 3 months (unless something pops up where I might need to go in sooner). 

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PS - I also got C-Diff from being on long term antibiotics.  Very difficult, painful  and hard to treat as well. 

 

OP - I am not posting things about antibiotics to discourage you.  But just to point out that doctors have reasons for being careful about how they go about all this.  If you go this route, it may be the best thing for you but you want to be monitored by a good doctor for the best possible outcomes. 

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I am so thrilled for you on the clean emg! Praise God! Lyme isn't awesome but it's a heck of a lot better for you long term, so I hope you can find a good Lyme doctor to help you with this. I'm absolutely rejoicing for you and your family!

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Kelly... :party:  :party:  :party:

 

In honor of post # 201, I think you need a new "To Do" list and in no particular order:

 

 

 

Grab your 'right hand gal'   :001_wub:  and go kiss those last two babies.

 

Think about making an heirloom baby gift for the impending arrival!

 

Savor your bright and bubbly gal skipping out the door.

 

Give the lil lady with a heart of solid gold an extra tight hug.  Her momma "gets" her.

 

Reflect on the joy of being able to have your middle two ladies at home with you.

 

The boys???   Feed 'em.  Again.

 

Remember to tell your DH how AMAZING you think he is.

 

 

The entire Hive is sharing your joy today.  A CLEAN report is HUGE.  No words here...just joy.

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Thank you for the update -- I never thought I'd be praying for someone to have Lyme disease, but all things considered, it seems to be the best possibility. I'm so glad it's looking like it's not ALS!!! :grouphug:

 

Exactly what I wanted to say.

 

Thank you, Jesus!

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