When the mind doth calm

Almost unbelievably, the change of more than Spring has begun

I never thought it could though wish for it I did with all my might.

Because you can only see from where you have been unless given to dream

But alas I don’t do well with fantasy: give me something real I can touch, I can feel!

Years with my mind in the craggy place of sickness but yet wired just the same

Astounded I functioned at all as I look back at my years from there to here.

So the consult among the experts, the one we had to persist to even get

Held the critical link to a change in medication becoming the magic pill, so to speak.

More days, more nights free of seizures than ever before have opened up my world

To the wonders of being, the tasks of life, the longing embraces of my beloved so sweet.

With more road to travel in this journey of recovery, I still do not fear it ending soon.

When the mind doth calm the seeds of true hope and love are born I can see:

My Lord hath brought His goodness and in it I will simply dwell for now, alright.

Psalm, Psalm 107:29, waves, Bible, storm, Jesus, calms the sea, hope, trials

Changing seasons, changing gears

As the winter loses its harshness on this second day of March, so have I. Seems that I am letting go of a few things inside and out as a change of season has landed on our doorstep . . .

Our trip to Mayo Clinic ended with a focus much different than the one we had when we arrived. Briefly, the expert neurologist informed us that my labs that I had painstakingly collated from home were “garbage,” that my problems appeared to be psychiatric, and that further testing would be a waste of money: we see 150,000 people a year in the Autoimmunity Clinic. You don’t have it! A second neurologist expert used more functional terms yet still claimed that “even a 3rd year medical student knows the difference” in the various differential diagnoses. So we (my healthcare providers to date + myself) are idiots? So it seemed as we entered the weekend in Rochester, Minnesota . . .

Six days after that first appointment, the shock of what they were telling us had worn off. The exhaustion and soreness from extensive lab testing, EEG, lumbar puncture, and 5 additional consultations gave way to a new direction in my ongoing recovery from a serious illness. It was a tough mental journey while literally trapped on Sunday in a Minnesota blizzard but I did get there. First, on Monday an Endocrinologist determined that I was on too much thyroid medication and it could be contributing to my symptoms. Holy cow! The new medication was ordered that afternoon and sent on its way to our home address. Days later, the adjustment process is both rocky and underway.

Second, the physical rehabilitation department has a special program for what they term a “Functional Movement Disorder.” The physical and occupational therapists retrain the brain using specific balance, breathing, and movement techniques within the context of stimuli for me that trigger my convulsive episodes. Interesting. A trial run of this approach was horrific! In retrospect however, I recalled an evaluation in a local Balance Center 2 years ago and treatment that was recommended for a “Mild Vestibular Disorder;” it was also horrible and I couldn’t do it in tandem with other treatments my Doctor recommended at the time. The Mayo Clinic staff say that their approach is different so I decided to begin their PT and OT home programs regardless. What if it helps? In 3 days since then the convulsive episodes have not yet changed but my balance is improving! Yay!

I don’t have an autoimmune disease as defined by the Mayo Clinic. My labs are also negative for various infections and inflammation, glucose and other markers for which my blood and cerebral spinal fluid were tested. But some other labs are waaaaaaaay off and those are the ones in focus right now. If I can progress in my home exercise program, and I suspect that I will do so quickly, I have the option to return to Mayo Clinic for a 5-day intensive Functional Movement Disorders Program. Perhaps within a couple of weeks I will know if this Program will be effective for me: if the techniques begin to change any aspect of the episodes then, Lord willing, I hope to return to the Mayo Clinic. By then my thyroid status should be moving in a better direction as well. It’s all good I guess.

Funny how enduring very early morning appointments under duress in a strange place with 1-2 hours of sleep painted a much different picture of me to these clinicians than what I am presenting now! Tonight I still feel depleted yet my stress level has gone down significantly. All of the laundry and unpacking is done along with the myriad of things you have to do after returning from a 9-day medical trip. (Our trip to Mayo Clinic was extended twice to complete all of the consultations recommended and requested.) The expenses were immense and we haven’t even seen the medical bills yet! (Did I mention that the water heater needed replacing 3 days later? Ugh.) Still I am stabilizing and in a better place than when I was struggling to just breathe 2 weeks ago.

The seasons are about to change and the gears of treatment planning for me are moving forward as well. Gentle Reader, you know my mantra will remain that Lord willing, I am going to get well! And to Him be the glory! I am grateful that Steve and I got to go to the Mayo Clinic and learn so much on so many different levels. What other levels you ask? Well that will be a bit o’ prose for another day of course. Until then Godspeed my friends, JJ

This but not that

woman with medication, supplements, too many, overdose, Lyme, chronic illness, naturopath, functional, medicine, supplements

Take the B Complex but not with Methyl B12 (met/met not val/val or met/val right?)

Twice per day not at breakfast and per your COMT SNP and not to excrete it by noon.

Add back the P5P because it’s not in my B Multiple as I once thought;

That was last year’s protocol and btw, change brands for the latter while you are at it too.

Again use folic acid already but not the one everyone else does

Lest you reject, binds or cancels out stuff with the rest, if you tolerate it of course.

What about that folate receptor antibody study from that lab

That your other Doctor told me about but did not do last year?  Duh, what?

And take the Sambuca all the time not just when battling a cold

Because it’s the only zinc I can tolerate but not with my newly found NAC dose.

Be sure to take the Claritin with manganese to fool the Lyme

Which I guess I have but only clinically and because my labs say this mineral is low.

Then there’s the magnesium I finally found that I could take or soak in through the skin

But take that one twice per day as well so it doesn’t go out with the B’s.

So if this makes any sense to you then you understand my plan better than me,

Because things are getting insane over here while still treating OP plus the P in the brain.

Oh yeah, the multi-factorial binder I took 2 hours after the new anti-parasitic

Must follow everything by 2 hours lest it cancel it out like a whiny kid who drops her stolen candy while running away.

Surely there’s more to know in this and not that:  just my brain dump for tonight

Can’t wait for my appointment next week when more test results will tweak this madness even further!

Stay tuned . . .

JJ