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Well, that was fun while it lasted. UPDATE - 1st post

BlsdMama

By BlsdMama,
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BlsdMama

BlsdMama

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UPDATE:

The doctor in Neurology truly ordered everything under the sun including a gram stain which isn't normally done.  He also looked for MS again.  He did not send me to Infectious Disease but opted to order everything himself which I found amusing.  I feel very grateful to the man.  Essentially we found nothing.  

A research assay is being done to see if the antibody is affecting but it is just research, nothing on which to act for the most part.

Essentially I regained the Primary Lateral Sclerosis diagnosis.  AND it's affecting my right arm already which I cannot tell and did not know.  That was hard.
Did the FIFTH EMG in less than two years - it was clean again.  I have two spots of poor or no activity but communication is still going on down there.  So now I go back into ALS Clinic every three months and wait.  This was a hard diagnosis ya'all.  No one surely wants ALS.  Ever.  And really no one wants to recognize they'll live a full life span unable to speak or move either. ?

You know who I really think got the short straw?  My husband.  Man, I love him and I think maybe that's why it's so hard to saddle him with this. ? ? 

It's been a little bit and I'm keeping my head above waters but I'm sad.  I know I can accept it and I know God can use it and I put it out to the local ALS chapter that they can use me to whatever advantage for whatever funding/speaking/etc. but this hurts.  Cate (5) said something the other day and she doesn't ever remember a time when my leg wasn't bad.  I just keep thinking that it could be possible that she not remember me not in a wheelchair or not being able to talk.  Can you imagine?  And then I remind myself that anxiety doesn't make anything true nor is it helpful.  Sigh.  















Mayo is pulling the Stiff Person Diagnosis.

We did four trials (low dose IVIG, Rituxan, high dose IVIG, and plasma exchange.)  
So, essentially, let me sum it up for you:  They thought I had glycine receptor antibody caused Stiff Person Syndrome.  Chances? Like 1 in 6 million.  (Stiff Person is 1 in a million but GlyR+ SPS is more rare.)

But wait, now they think I have Primary Lateral Sclerosis again.  What are the chances of PLS?  Well, 4 people out of a 100,000 will get ALS and PLS is between 5 and 10% of those.  So that's roughly 300 people per million I think, but I was never spectacular at math - fairly rare.

Ironically (or not so much) Lyme has directly caused glyr+ SPS in three medically confirmed (and published) cases.
Fascinatingly, late stage neuroborreliosis (late Lyme) can cause motor neuron failure (ALS/PLS.)

Drum roll.

But I don't have Lyme according to Mayo.
I mean, sure, they found a little bit in my spinal fluid - but not "enough" to be positive.
And sure, the PCR test isn't reliable. (34%-70% accurate at best guess according to this 2018 study: https://www.ncbi.nlm.nih.gov/pubmed/29857888)

And, yeah, I've had knee problems, and yeah, been to the ER for heart issues a few times, but don't worry, I'm sure it's not Lyme.  (If you can't hear the dripping sarcasm, don't worry - it's there.)

That said, I finally got a doctor to hear me out - funny thing?  He's not from Infectious Disease.  He's in Neurology.  
Next Thursday and Friday they are repeating absolutely everything.  Every.  Single.  Test. 

MRIs of the head, neck, back.
Spinal Tap, bloodwork, EMGs... all of it.  We're going on a Lyme hunt.  It's kind of like a snipe hunt, but the nasty little spirochetes do exist.  

I'm asking for prayers - from your mouth to God's ear, if they're there? I'd sure to like to find them.  Because, at this point, I NEED Mayo.  I can't just self treat.  (I have months of doxy prescribed and in my cupboard but it alone is unlikely to handle late stage neuroborrelia and I have the GlyR+ so once the EMG is bad, they will stop prescribing me ANYTHING and the insurance will cover nothing.  This EMG is "shocking" gamble on Thursday.

Last week was a very rough week and next is looking much better.  And? My head hurts.
 

 

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TravelingChris

TravelingChris

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Praying. Our family is all too familiar w/ changed diagnoses and doctors not knowing stuff.And also very familiar w self treating because of doctor failure issues. I really hope you get answers and help.

As to Lyme, I don't think they are finding all the people who have issues. My son just was diagnosed with the meat allergy from a Lone Star tick bite. They thought only Lone Star Tick's carried it but cases have been showing up 8n Europe and Japan too and they don't have those kinds of ticks. I also think if over those places, probably over Russia,  China, Mongolia at a minimum but just not testing or suspecting.

Just like the stupid CDC announcement that most suicides aren't mentally I'll. They meant aren't diagnosed and that is a big problem of why there is an 8ncrease in suicides. 

 

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Liz CA

Liz CA

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1 hour ago, Arctic Mama said:

Oh brother.  What craziness with the insurance and the diagnostics and now all the things again?  I am praying they find conclusive evidence of what is causing your symptoms and can treat you, accurately.  SO FRUSTRATING!

 

Yes, yes and yes! I have recently said to dh (somewhat jokingly) that I will eschew all medical care now and die in peace and with less stress.

So, it's a good thing that the neurologist is redoing all tests even though you are subjected to poking and what not again? Do I have this right?

If they discover spirochetes indicating late stage Lyme, they will have a treatment plan and you will heal completely?

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BlsdMama

BlsdMama

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On 9/27/2018 at 8:57 AM, Spryte said:

Thinking of you.

There’s a saying in the Lyme world:  “hold the Mayo.”  Meaning Mayo rarely finds Lyme.

What about an LLMD?  



I don't disagree.  The problem isn't so much the Lyme. The problem is that whatever it triggered, my body now makes the glycine receptor antibody.  It exists in 4% of the population.  They suspect in some people benignly.  The people it does affect?  Spasticity, rigidity, spasms, myoclonus, encephalomyelitis, (PERM), stiff person.  What are the chances I have symptoms AND the antibody but the antibody is benign?

So - without the stiff person diagnosis, no plex and no IVIG, which are the treatments.  So then what?  Progressive deterioration.  


So I have an LLMD and she's willing to treat.  I have a stockpile of doxycycline.  The issue is that doxy can produce an acceleration in people who have MND.  That's a frightening risk, kwim?  Especially for someone for whom the progression is slow.

On 9/27/2018 at 9:31 AM, J-rap said:

I'm so sorry you're going through this.  I'm glad you have a doctor now who is listening.  We've been back and forth between infectious disease and neurology at Mayo a lot these past 14 months.  Maybe we've been there at the same time...

 

 


?

On 9/27/2018 at 9:32 AM, Arctic Mama said:

Oh brother.  What craziness with the insurance and the diagnostics and now all the things again?  I am praying they find conclusive evidence of what is causing your symptoms and can treat you, accurately.  SO FRUSTRATING!


Unfortunately nothing ever went away.  My balance improved but the leg has grown more spastic, the clonus has significantly worsened, my other leg is hyperreflexive and has developed mild clonus, and now they tell me the right arm is beginning to show signs of weakness and hyperreflexia.  

On 9/27/2018 at 9:38 AM, itsheresomewhere said:

I hope you finally get the answer.  Glad to hear someone is listening. 

Mayo is so far in the dark for lymes.  On the lymes pages, they refer to them as anti lymes.  


I know.  Unfortunately they are the experts on glycine receptor antibody.  I don't see a way around them and if anyone does, I'll listen.  An LLMD is something I currently have.  She cannot help with PLS/ALS nor can she help with glycine receptor antibody issues - only Mayo and the Cincinnati Clinic have significant experience.

On 9/27/2018 at 10:05 AM, Pen said:

Prayers   !!!

 

I think a finding of some Lyme —any amount at all— in spinal fluid is reason to seek out an LLMD.  


So, after they found it ,I did go through treatment extensively - 7ish weeks of intravenous ceftriaxone, azithromycin, and daptomycin.  Then they found the glycine receptor antibody and we stopped antibiotics and begin the trials which seemed the most prudent thing to do.  

On 9/27/2018 at 4:10 PM, nevergiveup said:

Well, what would be the harm in starting an herbal protocol for Lyme and it's co-infections?

Buhner, Cowden, etc.  There are a lot of protocols out there.  The Healing Well website has a lot of information and folks who have dealt with a lot of troubling physical problems from these infections.


The issue I seem to run across is that those of us who have a tandem diagnosis of MND and Lyme - we don't recover.  If you google the stories, you get the biographies of people diagnosed with ALS, then they discover they are Lyme positive, go through treatments, and then you google their name and come across their obituary.

That doctor, the horrible one who is making Youtube videos, Alfred Miller:  https://www.youtube.com/watch?reload=9&v=Fr61GV8JCYQ


 -  Yeah, google his daughter in law.  Oh, here's her obituary: http://www.legacy.com/obituaries/bostonglobe/obituary.aspx?n=dana-k-miller&pid=174064437&fhid=8784 

Now, wouldn't you think, since he was convinced she had Lyme that they would have all funds going to Lyme research?  But they don't.  Gifts are to be directed to ALS Therapy. 

There's a connection here, but virtually no success with the exception of Martz.  He "provoked" a positive Lyme test with doxy - the reason I collected my little stockpile:
http://als-cure.com/antibiotics-als/david-martz-cured-his-als/ 

However, studies show that tests done relatively quickly after taking doxy tend to be more false negative. 

I think the main problem is that many are profiting off the Lyme world and it's so hard to tell fact from fiction that it's crazy.  I think the game plan going forward is clean eating - there are some studies that show a reduction in progression for ALS/PLS and it's good for Lyme.  I'm checking out the Buhner and Cowden protocols.  And I'm doing some things that have been indicated in some rare ALS reversals.  Most ALS reversals are shady.  There are only about 38 confirmed reversals.  Most were men, they were (if I remember right) EXCLUSIVELY limb onset (which I am), and were not rapidly progressive.  Plus what can it hurt?  Apparently cannabidoil is heavily suspected to have some positive affect.  Curcumin (active ingredient for Turmeric) is another.  Who knows?  Meh.

 

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