Many are wondering
whether we are still planning to go to the Apothec Wellness Clinic in Edmonton this summer. As my last post indicated, yes, this is still
the plan.
The questions play in
our mind about whether the treatment is still needed. If mold is the problem then maybe we don’t
need to go for this Lyme Treatment. The
literature shows that mold and Lyme attack the immune system similarly, are
often found together and have many overlapping symptoms. But in the end we realize we are still in the
same position as we were before we found mold – we need to start treatment to
see how Rebecca reacts and whether she has a Herxheimer
reaction to indicate Lyme Disease.
We are thankful that in the decision which we had to make with regards
to the type of treatment she would do, we chose to do HBOT (hyperbaric oxygen
treatment) as this treatment is also being effectively used in people with mold
disease. The clinic that we are going to
is not only familiar with Lyme but also with mold illness since they often go
together.
Since Rebecca was
“diagnosed” in January, I have been quite busy trying to keep up with getting
kids to school, home schooling Matthew, playing doctor and nurse and taxi and
all the other regular things mom’s do, that I really have not had time to look
into making plans for the summer. I did
get about a week before Matthew became worse that I had a chance to look at
housing ideas. In that week the light
bulb went on that Rebecca is still considered a child and so maybe we would
qualify for the Ronald McDonald House (RMH).
But since the treatment we are doing is a private clinic I wasn’t sure
that it would meet the qualifications. I
looked it up and applied and then the clinic connected us up with their Social
Worker who filled out the application for us.
We have been informed that we are on the waiting list.
Unfortunately, you cannot
reserve a spot at the RMH and you don’t find out until 1-2 weeks before your
scheduled arrival date if they will have anything available. Having stayed in a RMH before, we understand
why this is, but it does make it difficult to make plans. We did some searching around sites like
Airbnb and VRBO, but we run into the problem of cancellation fees, especially
for Airbnb which charges you a one month fee if you cancel on a long term
rental. Some owners will adjust this,
but mostly you they want firm arrangements, which we can understand. We have found a website that will likely end
up being our backup plan: https://www.edmontonfurnishedrentals.ca/ I have contacted them and they said that they
usually have something available and they have worked with people before that
were not able to get into the RMH. This
might mean we won’t get the cheapest deal around, but we won’t be homeless 😊
I did also have a chance
to post something on our extended churches mom’s group and received some
amazing responses from complete strangers who offered their homes. Some of these were to stay in their home
while they were away on holidays, and others were for us to stay with them in
their homes for the treatment time.
While we stand in awe of the amazing benefit of the communion of saints
and love, and appreciate the generosity of these people who offered for us to
stay with them and will graciously put themselves out to have complete
strangers staying with them for two months, we decided that since this is for a
longer period of time, and since we are coming as a family because of the state
of Marietta and Matthew, it would likely be best if we had our own private
space. I have yet to follow up with the
people who offered their homes while they were away on holidays as we have not
completely ruled out this option. The
hesitancy of this is that they were not near the clinic (one was in Devon,
which is a 40 minute drive), and we had hoped to be in the city so that
Marietta and Matthew could use the bus service while Rebecca and I were at the
clinic … but those plans are possibly changing.
In February, shortly
after Matthew became much worse, we decided to send his blood work away to
Arminlabs in Germany to test for Lyme and Co-Infections since he too had a tick
attached to him a while ago. While his
symptoms started off differently than Rebecca, they were beginning to show more
signs of similarity, including dazed look and the flush/pink cheeks that they
would get when the dizziness is bad (it’s not that they feel hot and flush,
they don’t realize that their cheeks are flush, but it’s a sign to us). With Rebecca already lined up for treatment
in June, we decided it was better to get him tested sooner than later. Matthew’s tick history is not as clear as
Rebecca’s. The first time I ever seen a
tick in my life was a fully engorged one that came off of Matthew from just
above his ear. So I know he had a full
engorged tick on him sometime before Rebecca, but I have no idea if it was the
same year or already the year before.
Matthew has also at some point been in the hospital because he could not
walk. I had completely forgotten about
this, but Marietta reminded me of it when I was trying to track down the date
of when this happened with Rebecca. Once
Marietta said this it came back to me. I
had taken him to the local hospital, but whether this was before or after his
tick bite I have no idea. So I really
cannot say if it is related at all. His Lyme test results came back without any positive bands
or antigens. The perplexing part was his
immunology results, which were very similar to Rebecca’s. All the same things Rebecca had out he also
did and his CD57+ was even lower then Rebecca’s. The CD57+ is used by some doctors to
determine if your Lyme treatment is effectively helping … but like everything
else Lyme, it is a debated test.
Matthew’s results left
us a little unsure what to think as we know that there are many false negatives
with Lyme and so we talked with the clinic in Edmonton and they are willing to
put Matthew in a chamber with Rebecca if we do not find another answer before
June. Whatever is going on with Matthew
and Rebecca, we strongly think it’s the same thing … whether it’s Lyme, Mold,
Lyme and Mold or none of the above. So
now we have two kids booked for HBOT and supporting treatment and Marietta is
sort of an unknown/undecided right now.
Last week the clinic called and so I explained a bit of our current
situation. They are very familiar with
mold illness (CIRS) and when you first start at the clinic they run a complete
work up to check not only for Lyme and co-infections but also for mold build up
in the body (the urine test we sent away), heavy metal build up, toxic
non-metal chemicals, and lots of other tests to check how your body is
functioning. They want a good picture of
your overall health and how to work with each individual and are not just
looking to treat the Lyme bacteria. Once I receive our urine tests back I will
forward them to the clinic and we will discuss what they are telling us and how
to go forward. In the meantime we were
told by the clinic to definitely consider taking the time to try breath some air outside of
Ontario for a period of time before we start treatment.
We were originally
scheduled to begin treatment on June 20th. The plan was for Rob to drive with us to
Edmonton and then he would fly back home once Rebecca had started
treatment. We were thinking to leave on
June 13th and take a bit of scenic trip, making it a bit of a
holiday as well, but have pushed that back to June 14 or 15th. Because of her concussion, Marietta is behind
a year in school so she is still in Grade 11 and will not be graduating, but
her class is graduating and this just happens to be the year that they changed
graduation from September to June. She
really wanted to participate in this, but we came to an agreement that we would
stay until her last day of school and leave after that. The last day of Grade 12 usually involves
lots of good-byes and class pictures and signing shirts, etc and she really
wanted to be there for that. While she would love to be there for the actual ceremony,
she can live stream it and still see how it goes. Since graduation is in the evening the class
will not be going out afterwards like they have done in previous years, so she
will not miss out on that activity (although she wasn’t sure if she could
really be included, since she isn’t graduating). So for now, we plan to leave June 14 or 15
and we’re not actually sure when treatment will begin. The clinic is flexible with our start date and
we still need to determine how much time we want to take for our mold
sabbatical before treatment starts.
So in the meantime, I’ll
just keep watering that money tree out back. J
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