A marker of insanity

Look closely at this picture:

sheep, chair, hoof, trimming, animal, vet, husbandry, parasite, treatment

Did you know that you can purchase a heavy duty chair for a sheep?  Crazy stuff!  I cracked up when I saw it in the midst of researching online sources for parasite treatments.  This chair is for trimming the hooves of sheep.  I THINK I NEED ONE TOO!!!

“A sheep or a heavy duty chair?” you ask.  Who knows, maybe both!  Because that is just how insane things have gotten over here, trying to diagnose and treat a serious illness without a clear path to follow.  The latest example is trying to treat for parasites.  They harbor metals and toxins so it makes sense that my treatment would be so complicated, especially when markers for metals and toxins have been high for me at some point.  But try and define which parasite you have after numerous tests are inconclusive, you end up going down a dark hole of guessing or worse yet relying on alternative energy testing — neither one of which are appealing to me.

But I have seen parasites over here.  The worms you can see; the microscopic protozoa you cannot.  Over the past few months I have been treating them with a variety of herbals or limited doses of medications.  Some symptoms got better and my worst symptoms got worse for a day or two.  So what is it:  protozoans or worms?  Both?  Where would I have picked them up anyways?  Why have I gotten temporary relief with some symptoms and violent convulsive episodes and headaches with others?  The answers don’t come easily yet it appears that it is because I am on the right track after all.  Inflammation and brain swelling follows die off of parasites if they are in your brain, your central nervous system.  Many helminths can cause seizures.  Fortunately/unfortunately, brain scans have not found any cysts.  The only remaining diagnostic tools are more obscure labs or a lumbar puncture to test my cerebral spinal fluid.  I had spinal injections many years ago.  I don’t want a lumbar puncture!

So here’s how insane things have gotten lately:

  • If my Doctor’s office cannot find the right labs to process additional parasite testing then I am responsible to search for them nationwide and provide the office with all of the information, facilitate the referrals, and obtain the test procedures.  By the way, experience tells me that very likely I will have to follow up on getting the results to the Doctor’s office, confirming receipt as well figuring out how to fit reviewing them into my appointments already limited by cancellations 25% of the time by their office.  New appointments are 5 months from now . . .
  • The trial-n-error of a variety of herbal, over-the-counter, and drug options for treating parasites has left me having to manage virtually every aspect of this potential cause of illness.  Research continues to dominate my waking hours, trying to find the best review articles and treatment strategies for those that may apply to my care.  Thankfully my Doctor, after much resistance and lectures on his liability  concerns, will review this literature and make recommendations in light of it.  The newest step in me having to find appropriate laboratories seems too much to bear.  I guess I have no choice but to proceed and hope I find the right information online somewhere, Lord willing.  More time and dozens of more seizure attacks will follow daily in the interim.  At least Ibuprofen is helping now with the headaches!
  • The billing of two of three past treatment situations are my “special project” each week.  Looks like I just got the first one resolved from an ambulance trip in January so hey, let’s add two more, eh?  Getting pre-auth for a special injection and getting reimbursement for a specialized test in July remain.  No problem.  This is why we go through so many reams of paper around here dontcha know?  Printing out the documentation for tracking everything, following up, yada, yada, yada fills my days.  Just doin’ my job, ma’am!
  • My latest dilemma is the most crazy:  if I am convinced that parasite treatments are needed but I am unable to obtain the strongest ones via a traditional medical route then others in my situation have ordered medications from veterinary or international sources.  Ordering meds online scares the heck out of me!  Members of certain Facebook groups claim both are very safe options and have worked well for them when their Doctors poo-pooed their requests for treatment.  I just dunno about this . . .Systemic parasitic infections are often a clinical diagnosis just like chronic Lyme.  The latter seems to be more acceptable in illness-focused groups than the former.  But the evidence is growing (pun intended!) that one of the strategies opportunistic infections use to stay alive inside of you is to hide in larger parasitic organisms.  The body may even harbor parasites to keep these smaller organisms from killing us.  And the research confirms that parasites harbor toxic metals in possibly yet another symbiotic, protective mechanism. At some point you have to address both the chicken-and-the-egg in these toxic relationships.  Kill the parasites and out comes other toxins both organic and inorganic.  Talk about a “herx!”  At least now I have an Ultra Binder to minimize the herxheimer reaction.
  • Very simply, the only rescue remedy I have remaining to stop the worst of the convulsive episodes is a high dose of steroids.  Nothing else helps for more than a few minutes.  The problem with this is that my Doctor won’t prescribe but a few doses because of osteoporosis (that likely came from antibiotic treatment for chronic Lyme last year).  I understand his thinking.  However, he doubted me when I told him that I only used it sparingly even though I showed him the bottle with remaining doses still in the bottle!  He decided that it would be appropriate to use steroids when the convulsive episodes exceed 7 hours.  SEVEN HOURS!  That was what I did a week ago Saturday.  It was hell!  If I did not have those remaining few pills left, I would have landed in the Emergency Room again.  Holy cow.  Holy sheep?  What an insane treatment plan.
  • So I continue to stay up very late at night most nights because sometimes it lessens the convulsive episodes.  Often there are breakthrough spikes while I sit here with you and while my beloved sleeps soundly just beyond the door without me . . .

What an insane treatment plan indeed.  So gather ’round anyone lost in the sea of forgotten medical mania and serve up a tincture of sheep elixir for a sorry night of seizing under the moon.   Or maybe not.  I have no idea at this point.  But I gotta tell ya that wrapping up in a nice wool blanket on a bark-a-lounger sounds pretty good right now.  Move over Sheepy.  This gal’s gonna need to rest more than you do right now . . .

JJsheep, flower, bug-eyed, big eyes, lamb

 

 

Her Color is Lyme

I am pleased to share with the Gentle Readers of New Hope Beyond Lyme, a second guest blog interview!

Introducing:  Jennifer Steidl, a WordPress blogger from the State of Washington I met after we “liked” each others blogs a few times!  What interested me in reading Jennifer’s story is her devastating exposure to mold biotoxins as a child then her battle with several other serious illnesses including Lyme disease.  What kept me coming back was her gentle way of communicating her experiences and her faith in the Lord.  Please check out her blog at:  http://www.jeanvieve7.wordpress.com/ for more of her story.

And now let the interview begin:

1.  Tell us about your life before Lyme and the development of mold biotoxin illness.

It is actually hard to recall life before illness, we moved into a mold filled house when I was 11 so my (our) health deteriorated after that point. It started with fatigue, sinus infections, and various other symptoms. It took years to discover the problem was mold. We lived in the house 6 years, and after moving out our health started to get better for a time before auto-immune symptoms started to make themselves known.

2.  What role does your faith in God have in your recovery process?

It has been the essential element. I had times when I felt so terrible physically, and was so depressed I think I would have given up all hope if it weren’t for God. And knowing (even if it was only deep down at my core) that He had a plan and a purpose for me brought me through the darkness. I trusted that He led me to a team of doctors that knew what they were doing, and He would not have done so if it were not for the purpose of healing.

3.  How can I keep from blaming God or others for my illness or the things that are going wrong in my life?

I can honestly say I have never blamed God for years of struggles and illness. Been frustrated, angry, depressed, desperate, confused…yes, but not angry at God. I am not being arrogant at all, but rather I had to resort to what I knew was true of God; His character, and the way He works. I am a weak feeble-minded human being and I have doubted these truths many times….but somehow not at my very core. Dive deeply into His Word, pray fervently and honestly, don’t be afraid to ask Him why you are going through these struggles, He will reveal it to you in time. Be open to learning whatever He has to teach you during this time, and what He has given you to teach others.

4.  What are your favorite verses of scripture or Bible stories these days?

  • A Couple of my favorites:  Hosea 6:1-3 “Come, let us return to the LORD. For He has torn us, but He will heal us; He has wounded us, but He will bandage us. “He will revive us after two days; He will raise us up on the third day, That we may live before Him. “So let us know, let us press on to know the LORD. His going  forth is as certain as the dawn; And He will come to us like the rain, Like the spring rain watering the earth.”
  • 1 Peter 1:6-7 In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ.

5.  What works the best for you with the difficult symptoms of Lyme and mold treatment?

It has changed over time depending what stage of treatment I am in, but one thing that has made the biggest difference in energy and weight loss has been Cholestyramine. It is used to rid the body of toxins that the liver alone can’t deal with, especially mold toxins.

6.  What 2-3 things do you look forward to the most when you are well?

In some ways it is still scary to hope too much (the fear of not getting to do what I want to do), but that is something I am slowly getting past. On a small scale I would love to really get back to biking. I have a goal of riding 50 miles in one day. Also I would love to get back to yoga. On a large scale I have always desperately wanted to travel, with New Zealand being my number one destination.

7.  Is there anything else you would like to share with the Gentle Readers viewing this blog post?

I hope with all my heart you have a good doctor or team of doctors that really know how to treat Lyme, it’s co-infections, and especially the secondary illnesses that accompany it; heavy metals, candida, parasites….If you do know that what you are feeling now is temporary, and it gets worse before it gets better. You can make it through. Don’t be afraid to ask your doctor/s the tough questions. Do lots of research and know your illness as best you can. Reach out to others both to learn and be learned from.

Don’t let yourself battle this alone. I think this is one of the top struggles of Lymies because so few people are able to understand what you are going through. But be honest about your physical and emotional struggles with those who love you, don’t try and do it by yourself. No matter how terrible you feel at this moment, allow yourself to accept that you are in a privileged place (crazy I know). But God is drawing you closer, so let yourself be drawn into His arms of grace. There is abundantly more for you at this moment in Christ because all else has been taken away, hold onto it, embrace it, don’t let this moment pass you by.

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Thank you for sharing your story, your heart, and your hope today Jennifer.  I pray that the Lord will bless you on your journey and see your through to complete healing and wholeness.  Take care lady, :J