Friday, August 15, 2014

Frets, Fears and Bloodwork Results

I will attempt to outline our week:

MONDAY: Visit with Dr P in Buffalo NY.  Bloodwork results revealed that my IgA antibody levels are low.  This is a condition a primary immune deficiency that occurs when individuals are unable to produce antibodies called immunoglobulin A.  Antibodies play an essential role in the body's immune system.  They detect and bind to foreign substances (like bacteria, viruses, fungi, or allergens) that enter the body.  This signals other immune cells to destroy the foreign substance.  The B-cells of patients with selective IgA deficiency are unable to switch from making IgM to IgA, so the amount of IgA produced is significantly reduced or absent.

There are two possible explanations for the lack of IgA antibodies in my blood:

  1. This condition appears most often to be hereditary and makes the patient more susceptible to infection in the gastro-intestinal tract.  It occurs most frequently among people of European ancestry.  Researchers estimate that one out of 500-700 people from this group (ie. Ductch) develop the disorder.  It is often linked to autoimmune diseases such as Celiac (my sister Heidi was just diagnosed with Celiac this year), Lupus, Rheumatoid Arthritis (Lyme....) 
  2. The other explanation for a low IgA result in a person who has contracted Lyme is that Lyme Disease causes immune suppression.  The Lyme bacteria masks itself so that it is not recognized as a foreign invader and takes over the body.  Therefore bloodwork to test for antibodies and used to diagnose Lyme disease will often show that there are no antibodies present in the blood.  This produces a false negative result in people who actually HAVE Lyme Disease! When used as the ONLY diagnostic tool in patients suspected of having Lyme Disease many cases of infected people are missed. My Elisa antibody test was negative 2 years ago when I was tested in Canada using the currently accepted antibody test.

According to the research I have done, people with IgA deficiencies that are accompanied by deficiencies in the IgG subclasses (I am also deficient in subclass 1 & 2) may be more susceptible to infection than others.  A lack in the IgA antibodies makes it very difficult to overcome infection in the gastrointestional/mouth areas, as indeed I have found out with my continuing struggle to control the Candida infection and my recurring battles with bladder infections over the past few years.

IVIG Treatment:

Doctor P told us that because of this deficiency in my immune system I will require Immunoglobulin (IVIG) treatment in order to be able to recover from Lyme Disease fully.  I would like to study IVIG to treat IgA deficiencies more fully before committing to this costly treatment as I have found conflicting information on the subject.  If indeed it is necessary for me to receive IVIG, I would have to find a doctor in Canada willing to treat me with IVIG for it to be covered by OHIP.  Otherwise the cost will be $15,000-$25,000 per treatment.....(requiring approximately 6-12 treatments).
I had IVIG treatment done in 2012.  I had a severe reaction to the treatment and needed to stop it after the first round.  According to research I have done this would be expected in someone who has low IgA antibodies as IgA antibodies are seen as foreign when introduced through IVIG treatment.  According to Dr P, the reaction could also be explained as a severe Herx. reaction.  The adverse reaction could possibly be controlled through adequate allergy medication and anti-inflammatory medication before treatment. 

THURSDAY: The Problem: Doctors in Canada do not generally support the treatment that I am currently receiving for Lyme Disease.  We experienced this on Thursday.... We were quite positive and encouraged with what we took as God's hand directing the fact that we had an appointment with the very person who had ordered the IVIG for me in 2012!  This appointment had been set a few months earlier already for this very Thursday! The problem is not that we saw God's hand in this - we see it in every detail of our lives, both good and bad.  The problem was that we thought this to mean that we would be able to have immediate access to IVIG treatment..... How we were let down! The neurologist told us in no uncertain terms that she is on the other side of the 'Lyme Debate' and does not support a diagnosis of Lyme disease or the treatment protocol we are following.  She also added severe warnings against all of the Lyme doctor 'hacks' out there.... She is more comfortable to contribute the huge improvements that I have made while being treated for Lyme Disease to a psychological manifestation of the power of positive thinking!  We agreed to disagree and parted ways - disappointed and discouraged.

At this time I also developed a rash over my body which indicated an allergic reaction to one of the prescription medications that I am currently taking.  I was very bloated and experiencing diarrhea again.  An appointment was set for the afternoon to see the Doctor in Buffalo.  We hopped in our car.  It stubbornly refused to work.... It is almost humorous at this point (removed from that day) how frustrated we were becoming.  We loaded everything into Eric's work pickup and set off for a very uncomfortable 2 hr drive to the States....

It was decided that I was 'toxic' and needed to flush my body.  I was sent home with IV bags to flush out my system and told to take a two day break from almost all medications before re-introducing them one by one until the rash and itchiness increased again.  I am enjoying the break from medication actually.  I look forward to a time when not taking medication every hour will be normal again....

It was a very frustrating and discouraging day.  We struggled with our sinful natures bubbling to the surface in the form of arguments and anger.  For me this meant I needed to spend extra time with the Lord.  I was no longer feeling positive about treatment and was discouraged and overwhelmed with what potentially lies ahead before the disease is eradicated from my body.  I was also discouraged because my timetable included getting things in order here at home so that the children could be home when school starts.  I was urged by the doctor not to overdo things because it will set me back and prolong the healing process.  I will not be able to have all of the children home in two weeks.  We will need to adjust our 'plans'.

A very helpful quote from the book "Running Scared" by Edward Welch:
"All we can see with the naked eye is our own particular frets and fears, but there is something much bigger taking place.  Worries are a way that we doubt the King's presence and power.  Our doubts could come from our own stubborn commitment to the myth of personal autonomy, or they may come from satanic accusations that question God's generosity and our unworthiness.  Either way, anxiety and worry are spiritual wake-up calls that must be handled by spiritual means." 

When we arrived home, tired, sore and cranky we were greeted by two friends who were busy installing a new dishwasher that they had purchased for us to make my life easier.  Now I was ashamed of myself.... We are so blessed. Thank-you! 

Blessings seemed to come one after the other today.

  • Help from our church Family with setting me up in the hyperbaric chamber, amusing Damon etc.
  • A clean and tidy house, kitchen, bathrooms, clean laundry & bedsheets by the time I crawled out 2.5 hrs later - with the added bonus of baking in my freezer! (thank-you!)
  • A willing chauffeur (thank-you!) when I discovered last minute that our car wasn't in the driveway (I forgot it is currently under repair) when heading out for a doc appointment.
  • A positive visit with my new family doctor - she is willing to support me during treatment and will help however she can to take care of my body and do her part in advocating for me.  She is looking into setting up a visit with an immunologist so that we can explore any possible options in seeking to improve it my immune system. 
  • A delicious home-cooked prepared meal dropped off with heating instructions ready for my supper - according to my diet restrictions. (thank-you!)
  • The kids are home for the weekend!
  • I have improved physically - less bloating, more energy & my rash is almost gone...
One of our lessons this week: 
It is not possible to force God's Will to fit with our will.... 

We remain confident that God has a hand in the blessing of this treatment and will continue the work that He has began, if it is His will, by whatever means He chooses.  We need to rest and trust in His care!

"....your Father knows that you need these things.  But seek His kingdom, and these things will be added to you. Do not be afraid, little flock, for your Father has chosen gladly to give you the kingdom.…" Luke 12:30b-32

....Sharing stories of goblins, fairies , magical kingdoms and the Saucepan Man...Enid Blyton - one of the delights of our childhood....

1 comment:

  1. Hi Roze... not sure if you are reading your FB or have the energy to actually do that. So I'll just post this msg here as well: at times I have access to leftover supplies... IV tubing, PICC supplies, N/S flushes, alcohol swabs etc. Just wondering if that would help you out. If so.. .just let me know... and I'll bring them down ASAP. Perhaps just msg me on my FB account as I don't want to leave my phone number on a blog site. Praying for you!