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Wanna pray today? (Medical, Mayo, and the mama)


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'Kay.  So today is a follow-up at Mayo.  We decide what next.


Iowa says, "Primary Lateral Sclerosis / MND and we want another EMG because we see muscle changes."
Mayo says, "Stiff Person Syndrome likely, MND possible, Lyme is up in the air but we can't help without a positive PCR."
Kelly says, "This is freaking Lyme.  Please don't let it kill me."


So, I really, really, really hate looking foolish.  It's a thing.  And I'm about to lay out to my neuro why I think this is Lyme and look like a total fool, so if ya'all could pray for me?


Test results I'm taking in:


1. ACE level - 53.  Normal?  8-53.  Indicative only for sarcoidosis.  I have chest pain - probably my #1 problem area right now.  I want them to look for sarcoidosis (biopsy.)  
It is supposed that sarcoidosis of the lung is due to bacteria and studies are showing Lyme is a very likely candidate with mycoplasma being up there as well.


2. 2014 test for syphilis - okay, this is a weird one, being married almost 22 years, but when I came back to Iowa, I had to go to the University for my cerclage because I was considered high risk.  They ran a broad panel.  While this test is technically negative, I did get a quantitative number.  0.9 is positive and mine was 0.2.  Syphilis can test false positive if you are Lyme positive.  Both are spirochetes.


3. Lyme test via CSF - there was a quantity in my spinal fluid.  It was technically negative, but still, why the quantity?


4. My Igenex test - look, I know it's a questionable test, but I'm positive on bands 31, 34, 41, and 83-93 and Indeterminate on band 39.  

5. I live in the area of mayonii - a new strand of Lyme, discovered at Mayo.  I test negative but it has some pretty heavy implications, including neurological.  If there was NO test available, they'd treat me because I look like the poster child for neuroloborreliosis.  Because there is a highly unreliable test, I'm negative.  


6. I have a rash.  Oh my gosh I have a rash.  It's fading now, but it started mid December.  Blessedly I have pictures.  My arms, my legs, some on my shoulders, abdomen, thighs.  Mayonii is supposed to have a spotty rash, not a bullseye.


7. If not Mayonii, then is the rash sarcoidosis?  (Which then goes full circle.)


8. Going back to Iowa still truly believing this is MND, there is such a thing as syphilitic ALS - spirochete (spiral shaped bacteria) causing motor neuron disease.  If syphilis can, why can't Lyme?  We already know that Lyme is nastier than syphilis.  Worse, there are MANY people insisting their S.O. died from ALS and tested positive for Lyme.


So, the theory goes that I do not have the crazy common Lyme infection and instead have some kind of deviant limb onset Stiff Person Syndrome - the deviant type is like 1 in 7-10 million.  While I recognize the "fun" in being unique, I'm really not that special.


ALSO, Stiff Person Syndrome has been brought on by bacteria.  Specifically it has been brought on by Brucella.

I've been tested for Brucella because my Iowa neuro has a sense of humor.


Brucella is closely related to Bartonella.  I have not been tested for Bartonella.




So, today, I'm laying this out for my Mayo neurologist.  I feel incredibly foolish.  But how do I *not* fight for Lyme treatment here?  


The truth is she is going to say no.

I am going to seek out treatment through my Lyme doctor.

Mayo is going to continue to ignore the cases that don't test positive.

Lyme is going to proliferate.

And, hopefully, it doesn't get me.  But it will get others because they don't have ears to hear.


Prayers please.  This isn't a knock against Mayo.  I think they are remarkable.  I like, genuinely like, my doctor.  She is kind and compassionate and she will not make me feel foolish.  But...


I think they will push for either:

Plasmapheresis with a Hickman (shudder), Rituxan, or botox injections.  Of all of them, I like the Botox best. Pray they let me keep IVIG - It was a fight with insurance to get it and I do not want to try to do that without the backing of Mayo in the future.



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I will be thinking of you. I feel like some doctor, somewhere, should agree to treat you for Lyme! Would the treatment for Lyme be long-term antibiotics, or something? I wonder if you'll have to seek out a naturopath or some type of non-mainstream doctor that has an open mind.

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Kelly - TRUST your gut. PUSH for the doctor(s) to LISTEN TO YOU. This YOUR LIFE and you need to make

sure they understand that. Not all doctors are impersonal jerks and some are. Just make sure they listen to you.

There is no reason for you to feel foolish. You have obviously put time, sweat, and tears into your research. 

Just because they have a degree doesn't mean they know your body better than you do. 


I will pray for them to listen to you and do what is needed for you! God is in your corner on this!

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You do NOT sound foolish, you sound logical, thorough, well-researched.  But I recognize how difficult it is to fight against set views of the medical establishment.  At any rate, I am praying for your appointment today and that God will connect you with the right people and treatments today and in the future.   :grouphug:

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I am just seeing this but, WOW, if you laid out your info for the doc as well as you did in your post here, they've got to consider seriously a Lyme possibility.


Praying that all you said continues to burn in the doctor's ears, and that any tests ordered today will have some clearly defined results.

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Thanks all for the support.


Well.... good and meh, i would say.


So Mayo thinks it is definitely Stiff Person Syndrome. I guess that’s the good-ish?


Because of the rash, I do get an appointment with Infectious Disease. Woo hoo. (I am excited about that, btw.)


And Dermatology is going to attempt to culture it.


There have been cases in which bacteria brought on SPS.


Yesterday was good. This afternoon I have an appointment with a fella who is one of the leading experts in Stiff Person. Should be enlightening.


They confirm they believe this is a variant known as Stiff Limb. Continuing IVIG and making a drug plan to try to slow down the progression. Not a great disease but also not Motor Neuron Disease. (((((Hugs))))) to every single person out there struggling with MND and their caregivers too.

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So tell me if I understand this correctly: Mayo thinks it's not ALS, not Lyme but SPS?

What is the predicted progression of SPS? Is it manageable if not curable?


And can you talk the infectious disease doc into testing for any Lyme strand known to mankind - just in case? ;)

If it was Lyme indeed, and you got the right treatment, would the symptoms vanish eventually?



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