When it’s too dangerous: a treatment update

Killing bad bugs is serious business.  Who knows. Maybe even cancer will someday be treated the same way we go after Lyme Disease.  At least some of the fibromyalgia and multiple sclerosis approaches are starting to lean in the direction of causation by bacterial infection, parasites, and fungi.

But not all approaches are worthy of pursuit.  Most of you reading this blog know of the struggle I’ve experienced trying to eradicate Lyme Disease and some Co-Infections.  I’ve tried a variety of treatment approaches these past 1 1/2 years after extensive research, networking, and good ol’ trial and error.  Although 1 1/2 years is not a long time for the treatment of Chronic or even Late Stage Lyme Disease, I must say that I have learned a lot already!  Sadly, we are going backwards financially trying to find the best course of action.  And now an important truth became clear to me and my husband this evening from a Biblical principle:

23 “I have the right to do anything,” you say—but not everything is beneficial. “I have the right to do anything”—but not everything is constructive.  1 Cor 10:23

We have discovered that my most recent treatment approach is just too dangerous for me at its current intensity.  I will need to back off on the dosage of the new antibiotic regime to keep from damaging my body.  The seizure attacks of the last 36 hours, while not new to me, might even kill me if we were to continue this course.  To kill off Bartonella (a co-infection of Lyme) is considered by some, the hardest co-infection of them all.  This bacteria adapts as it escapes further into one’s tissues when in the presence of antibiotics and other approaches, making it both a super bug and a smart bug.  Unfortunately, it might be the cause of my chronic urinary tract infection and maybe even the seizure attacks.  My, my this complicates things!

We have decided to proceed with a slower yet persistent plan of attack.  The Rife machine will be on hold for awhile due to my increased sensitivity to electromagnetic frequencies when feeling sicker.  “Game on” is still our approach and we’ll take all the time outs, plays in the playbook, and “fighting Irish” I can muster to win this thing.  Steve will be home this weekend with me for my safety as we transition my care.  I’ve gotten weaker this past week and that is not good.

It is good, however, that we have hope and are one accord with the next steps.  I’ll continue on the protein/oil/vegetable diet to attempt to keep Candida down and replenish my gut flora; pushing fluids and probiotics will be critical as well.  I was dreadfully sick 1 1/2 years ago when I started on a rotation of a few antibiotics and had to stop.  Rife treatments and a host of supplements, tinctures, compounded prescriptions and Epsom salt baths followed.  At least now I think I will be able to tolerate a daily low dose of antibiotics:  the proven track record of care by the International Lyme and Associated Disease Society.  I will also continue with the mold illness treatments of which I have written previously:  VIP and Losartan.

Some things just take time I guess.  Another encouraging note:  after the wretched episodes, my mind is significantly clearer.  The improvement mimics my status pre-illness from when I contracted viral hepatitis 2 years ago.  Perhaps we are finally on to an answer after all?  Who knows.  I’ve had my hopes dashed before many times.  That’s o.k.  For tonight, or rather this morning, there’s a real indication that something is improving!

Have I mentioned how wonderful my husband Steve has been through this whole ordeal?  I am grateful for his unfailing love and tenderness that has never wavered despite the trials we have endured.  Thank you Jesus.  We are leaning on you and thank you for walking with us these days as well.

And thank you too, Gentle Reader.  :J

New Sport: Thwarting Disaster!

So glad the Lord gave me the presence of mind to cancel a Methacholine Challenge Test today.  I feel exhausted from the prospect that I could have died had I gone through with the test . . .

In the process of diagnosing asthma, a Doc orders a pulmonary function test.  If your lung capacity is deficient for either the intake or exhalation of air, you may have a problem warranting treatment or at least a rescue inhaler.  Since I started having severe chest pain and compression symptoms at the end of March, the LLMD ordered this test for me.  I completed it about a month ago with findings suggestive of mild asthma.  Hmmmm.  I’ve never had breathing problems before and the onset coincidentally occurred during the stress of relocating back to my home after mold remediation.  I was scared.  A lot was at stake.  We had spent thousands of dollars to remediate our home, much of it not covered by insurance or the gift of friends.  How was I going to do after 76 days away from home?  Turns out that I did o.k. initially then the noxious symptoms gradually returned.  Oh well.

We have continued to narrow down and eliminate the potential triggers over these past two months so I can get well.  This takes time and there have been some successes and failures alike. As long as there is an underlying Lyme Disease process (that I am not well enough yet to treat directly), I will have some sickness every day.  But the bottom line is that I did not have difficulty breathing or feel like an elephant was sitting on my chest until the last week of March, 2013!  The LLMD ruled out a heart attack.  Then a negative lab finding for a complication of mold illness suggested that I might benefit from a particular prescription medication, not covered by insurance.  I tried it and am receiving some benefit, gratefully.  The chest pressure is less most of the time.

Today was an exception.  I had a particularly severe reaction to our ol’ church building last night resulting in about 45-minutes of intermittent seizure attacks and marked chest symptoms.  I was still pretty sore today despite taking the medication for the latter symptoms.  So when hearing the risks of the Methacholine (MC) Challenge Test today including a full blown asthma attack, I got really scared.  The MC progressively constricts your airway while a respiratory therapist takes measurements of your breathing.  Holy cripes!  If your values go down 20% then they give you Albuterol to open your airway.  Well isn’t that dandy.  I was given Albuterol as part of the test protocol during the Pulmonary Function Test last month and did not notice any difference in terms of breathing easier.  Thankfully, I had a respiratory therapist who was willing to talk with me in detail today about the test, his experiences, my PFT findings; we agreed about the extreme likelihood that I would react negatively . . .

I feel like I stared death in the face today.  If I would have reacted, it would have not only been a full blown seizure attack AGAIN, but the risk of respiratory arrest.   Holy crap!  Remember the cartoon I posted awhile back about feeling like a lab rat?  This lab rat could have been no more.  I crossed out my name on the consent form and wrote, “patient declined test.”

When I have a seizure attack with chest compression, I do not breathe for several seconds.  It is by the grace of God alone that my breathing re-starts!  If I try to initiate active movement, such as trying to inhale, the volitional initiation of movement triggers another seizure attack.  A similar reaction happens when trying to talk or move as the attacks are occurring.  Eventually I collapse and need to rest.  Much time needs to pass thereafter before I can function on my own or someone else has to lift me up and begin to move me.  Sometimes I can initiate fine motor movements and not gross motor movements (such as walking or bearing weight on my legs).  Usually my biggest challenge is simply trying to breathe again.  Hyperventilation comes first then deep breaths and labored respiration.  Normal breathing is last.

O.K., does that sound like asthma to you?  Perhaps some aspects of it are like asthma.  I don’t think that most of it is asthma.  Google it and see what you think!

So my new sport this evening is first to write until my exasperation with the complications of Lyme Disease are more on the computer screen than in my head.  Sorry for you, the gentle reader and spectator.  This day was a bad one.  The sport of living with long term illness continues as I try to listen to the Holy Spirit and all the advisors/coaches He has sent to get through the game of life.  I am crying as I write this.  You the spectator have witnessed the athlete getting injured.  Not only is my chest still sore but my heart is bruised as well.

I talked to my precious husband on the phone from the parking lot of the hospital this afternoon.  God bless that man!  I was exhausted and barely realizing the significance of my experience inside that building when his kind words soothed my soul.  Steve has asthma and has had a Methacholine Challenge Test in the past.  He was worried for me, praying for me.  He agrees that it was too risky to complete it and ’twas better to have refused it.  After we talked I still had a few errands to run, prescriptions to pick up, supplements to purchase, and of course:  just a couple more plants to take home from a mom-n-pop nursery.  So glad Young’s had the Sweet Marjoram I haven’t been able to find anywhere else in the area.  Just saying the name,  “Sweet Marjoram” makes me feel better.

Now that all of this is “off my chest” I can go do what I do best.  It is dark now but that never kept me from gardening before.  Besides this time it’s planting two planters and I can do that in our garage on my very cool potting bench.  My husband’s son, Daniel, gave me that awesome bench 5 1/2 years ago.  Love it.

Sounds like Steve’s home.  Sigh.  All is well.sweet marjoram