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

BlsdMama

By BlsdMama,
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BlsdMama

BlsdMama

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Like others, I’m curious.... what is the treatment for Lyme at this point? What are the side effects? What is the downside to treating as if it were Lyme while continuing to explore?

I can’t imagine how scary and tiring this whole journey is for you!

 

It's so ironic that this got bumped today of all days.  Today is my first day of *real* typical SPS symptoms.  I was at Costco (for three hours) for kiddo eye appointments and my lower torso began to do "real" spasms.  I've had spasms off and on the last few months, but only a few times and only at night in bed.  And, let's face it, that's hardly unusual for anyone if they were on their feet a lot during any given day, kwim?  Mayo reported at last visit that I'm beginning to develop lordosis (?) of the spine - curvature.  This is a pretty normal thing in SPS patients but since I didn't think I was having spasms at all, I thought they were kind of playing it up a bit because they really want to slide me definitively into this one category.  Or at least that's the generally feeling I get.

 

The danger of treating the Lyme is that my body can only handle so much.  And, Mayo, because they are really exploring what glycine receptor antibodies are and are not, need a very clear picture of whether or not what they are doing is helping and so I am not supposed to mix treatments.  I had several weeks of heavy antibiotics through my central line - including ceftriaxone/rocephin and that's a decent one for crossing the blood/brain barrier.  Truthfully, I think the Lyme should be dead.

 

The question, in my mind, is did the Lyme trigger something in my immune system - and once the first domino fell, well, they all went in a line, kwim?  Many Lyme patients, after successful antibiotic treatments have seen further improvement with IVIG.  There is no doubt that I am making the glycine receptor antibody - the question is - what does it all do?  Does it just cause SPS?  Does it cause other things?  They don't really know.  It was discovered circa 2008 and they know there is a connection to SPS and SPS PERM but they don't know if SPS progresses to PERM or if they are separate or if they affect people differently, etc.

 

The last EMG showed nothing - no spasms, no constant activity - things that should be very present in an SPS patient a year and a half into diagnosis.  Also didn't show ALS.

 

But today the spasms are present and have been for over an hour now.  Going to take Baclofen and a nap.  

 

They've stopped the IVIG and it's been about four (?) weeks since the last one.  I start Rituximab/Rituxan next week.  Good-bye immune system.  But, I'll be curious what happens.  As a bonus, I also started Bactrim this week - a pretty heavy duty antibiotic that also crosses the blood/brain barrier, so if there is leftover Lyme bacteria, well, this should kick it too.  

 

This has really been one wild ride.  

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prairiewindmomma

prairiewindmomma

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It's so ironic that this got bumped today of all days.  Today is my first day of *real* typical SPS symptoms.  I was at Costco (for three hours) for kiddo eye appointments and my lower torso began to do "real" spasms.  I've had spasms off and on the last few months, but only a few times and only at night in bed.  And, let's face it, that's hardly unusual for anyone if they were on their feet a lot during any given day, kwim?  Mayo reported at last visit that I'm beginning to develop lordosis (?) of the spine - curvature.  This is a pretty normal thing in SPS patients but since I didn't think I was having spasms at all, I thought they were kind of playing it up a bit because they really want to slide me definitively into this one category.  Or at least that's the generally feeling I get.

 

The danger of treating the Lyme is that my body can only handle so much.  And, Mayo, because they are really exploring what glycine receptor antibodies are and are not, need a very clear picture of whether or not what they are doing is helping and so I am not supposed to mix treatments.  I had several weeks of heavy antibiotics through my central line - including ceftriaxone/rocephin and that's a decent one for crossing the blood/brain barrier.  Truthfully, I think the Lyme should be dead.

 

The question, in my mind, is did the Lyme trigger something in my immune system - and once the first domino fell, well, they all went in a line, kwim?  Many Lyme patients, after successful antibiotic treatments have seen further improvement with IVIG.  There is no doubt that I am making the glycine receptor antibody - the question is - what does it all do?  Does it just cause SPS?  Does it cause other things?  They don't really know.  It was discovered circa 2008 and they know there is a connection to SPS and SPS PERM but they don't know if SPS progresses to PERM or if they are separate or if they affect people differently, etc.

 

The last EMG showed nothing - no spasms, no constant activity - things that should be very present in an SPS patient a year and a half into diagnosis.  Also didn't show ALS.

 

But today the spasms are present and have been for over an hour now.  Going to take Baclofen and a nap.  

 

They've stopped the IVIG and it's been about four (?) weeks since the last one.  I start Rituximab/Rituxan next week.  Good-bye immune system.  But, I'll be curious what happens.  As a bonus, I also started Bactrim this week - a pretty heavy duty antibiotic that also crosses the blood/brain barrier, so if there is leftover Lyme bacteria, well, this should kick it too.  

 

This has really been one wild ride.  

 

I can't "like" this, but thanks for the update so that we can direct our prayers accordingly.

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BlsdMama

BlsdMama

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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?

 

Good question - I don't know.  I don't think anyone really does.  Lyme is really in baby-hood as far as medical science understanding it when it isn't just the matter of six weeks and better, kwim?   And then there are the implications - a lot of people are having auto-immune issues who have also had Lyme.  So, does that mean that Lyme was a trigger for another disease?  Random and spontaneous coincidence?  Lyme is on the rise.  Autoimmune disorders are on the rise.  But, correlation doesn't equal causation. 

 

In the most recent study out from Mayo, they tested 100 random "healthy" samples for glycine receptor antibody.  They had four positives.  Are those people going to get sick?  They just don't know the implications yet.  

 

Mayo says not Lyme.  They've given me every possible test they allow for.  Ironically they admit their tests are not trustworthy. - Not kidding -  https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/87973 It is rare to find in the blood.  The tiny amounts found in my spinal fluid have been pish poshed which obviously - well, there's nothing more I can do than I've done at this point.  John Hopkins came out last month and said, okay, so there is this post Lyme syndrome issue.  That was the first admission that ILADS is onto something by the larger medical community.  But, here in the gap?  What do you do?  We're left with the choice of chasing after Lyme (after several weeks of IV ceftriaxone, daptomycin, and azithromycin) or going with what they offer, which, in the end, might help if this was Lyme anyway - Rituxan.

 

 

SPS on its own is a tricky business.  They've known about Stiff Person for a while.  There are three subtypes - classic/stiff trunk, stiff limb, and PERM.  All three subtypes exist with glyR+.  The "best" outcome is for those with classic and GAD positivity.  The problems they face is spasms - specifically spasms of the throat or diaphragm.  That's the biggest risk factor for death.  Stiff Limb (what Mayo thinks I have) has the best overall outcome for living but the worst for becoming handicapped.  The average is 3.5 years to wheelchair confinement from first symptom.  Urine urgency & bowel issues (just like MS) are more widespread on stiff limb patients and I'm dealing with all of them as well as some muscle atrophy.  

Then there is the worst case scenario - PERM.  Essentially, if I understand right, it's the antibody attacking the brain stem and they autonomic system - for example blood pressure.  You're most likely to have a very bad outcome with PERM.  

 

HOWEVER, they are playing with stem cell therapy with SPS and there's been like four successful cases so far.  Blue Cross Blue Shield (our insurance) is one of the companies that has covered stem cell replacement for SPS patients.  They essentially harvest your own cells, wipe out your immune system with chemo, replant the cells, and that's it.  

 

It really is fascinating.  I mean, I wish I was watching from a distance, but it's interesting.  

 

So the outcome is really varied. The most recent study was done by the two doctors that I saw on my last trip - Dr. McKeon and Dr. Chiriboga.  21 GlyR+ patients with Stiff Person - all saw improvements except for two.  (Those two had PERM and, ya know....)  The stiff limb variants seemed to have the most success.  

 

At the end of the day - no one knows how long the improvements last or how great any improvement will be, but I am grateful for good medical care.

 

We have one doozy of a mess at the University currently.  They didn't get my Rituxan ordered in time and now I'm off schedule.  I should have had it three weeks ago and it isn't the fault of my doc.  He had it ordered ASAP.  I'm a little sick of calling and nagging and calling and calling....  I have NO idea how people who are really and truly unwell to the point they cannot advocate for their own care get anything done.  Mayo wanted everything done the week after I left there and here I sit four weeks later.  We called them yesterday and said, "Look, if you can't get it done, then you can't.  We need to know by tomorrow so we can just call Mayo and do it up there."  But Iowa already has insurance approval and I'm very concerned that if I switch places we might run into an issue up there.  It was WAY too easy to get insurance approval for the Rituxan (compared to what we expected) and I really am worried to rock the boat.  In the meantime, any improvements I "think" I might have seen from IVIG are definitely gone.  I really like my neuro here but I think Mayo works at an efficiency that is amazing - or maybe it's just that they better understand the urgency of treatment?  Whereas SPS is rare.  My neuro here has worked with SPS patients but I am his only GlyR+ and his only Stiff Limb and he was eight years at Mayo before coming here.  Plus, I don't think it's him.  He had orders in ASAP.  If I could convince my nurse advocate I'm actually ill that would be great. But, I look at her perspective and she sees ALS patients all day long.  It's a little hard to make the walking/talking person the priority in the list when they suffer SO much, kwim?

 

 

Bactrim is good stuff - I hope that kicks any residual bacteria for you.

 

I’m sorry you’re having spasms, they’re so painful :(

 

They're supposed to be and apparently they will get that way, but don't feel sad - these don't hurt.  They feel like early contractions. ;)  My muscles are tired this morning so they must have continued last night but I'm really not in any pain at all today.  I'll take Baclofen this AM and that should calm them down.  SPS is one of the diseases on the compassionate list for disability. Apparently it gets awful.  But it is really hard to separate what it used to be (no treatment) to now.  

 

It's like anything I suppose.  You take this day as one day, then you go to bed and take on tomorrow tomorrow.  I feel really good guys.  I appreciate the prayers more than you know.  We feel encouraged.  I have amazing medical care - I mean we're only 2-2.5 hours from Rochester and we have good private insurance - which is a huge blessing.  We hit our deductible in January ;) so now no bill concerns for the rest of the year.  My husband has a job where he can work from home when I need him to - so he goes with me to Mayo every trip and we don't have to worry about job problems there.  I mean, I'd rather be healthy than sick but if I have to be "sick" then this is the best case scenario.

 

 

And, in the effort to not screw up our kids by revolving our lives around mom being sick, we got goats.

 

 

Goat therapy may actually be the best medical choice we made through this whole thing.  <3 

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