Healing is happening!

Thomas is enjoying more activities without the physical set backs he typically would have.  We've been to lots of playgrounds and swimming in our pool recently.  We also tackled tent camping in combination with a lacrosse tournament that his older brother was in this past weekend.

Saturday Night

He definitely struggled during some of the trip.  We left Friday morning on the trip and by Saturday evening he was having difficulty walking from the muscle pain in his calves.  I carried him some but mostly he walked very slowly.  He struggled some with a headache as well.

Bad headache

We arrived home Sunday night at bedtime and he was able to get a good night's sleep in his own bed.  He slept in Monday morning and did very well the rest of the week.

Coming up on Monday late morning is his first session of massage therapy.  It is only 30 minutes. Tuesday is his first day of hockey.  Please pray that he is able to enjoy the hour of hockey without any set backs.  He is looking forward to it but he is also nervous as we are too.  He has another hour of hockey Thursday morning.   We then have a chiropractic appointment on Friday.

I am super optimistic that we are finally making permanent progress!  He has about 2 weeks left on part of his protocol of supplements for Lyme.  Then he continues on various others until our appointment on September 2 with the naturopath.  

Friday night trip to Lake Michigan

Naturopath update

We had a safe trip to the Naturopath on Friday morning.  I had to wake Thomas up to go and then they were behind schedule so we waited 45 minutes before seeing the doctor.  Thomas was wonderful though.  He sat very quietly in the chair in the waiting room and only asked a few times how much longer.  It's great that he likes to go to this doctor.  Kinda helps that in their store they have his favorite kind of suckers made without food dyes and this trip he picked a new tin of sour mints when we finished.

So good news is his mineral levels are coming up and he didn't have any of the ghost cells that were prevalent 7 weeks ago.  He does still have lots of thin cells.  He also had a lot more fungus.  Apparently it's pretty common to see an increase in fungus from the Borrelia (Lymes), which basically shakes up the fungus.  Unfortunately the Borrelia was not gone.  We could see the worm like spirochete.  Borrelia is known to "re-hatch", thus why people with Lyme often have up and down periods of feeling better and then terrible.

He recommended a 12 day course of strong probiotics to help with increased fungus.   We also started the monoimmune up again due to the re-hatching.  Everything else is staying the same at this time.  We are scheduled to return on September 2 unless we have issues that require additional attention between now and then.

Interestingly, I had the doctor look at the rash that is on Thomas' torso and has been since October.  His first thought was it looked similar to rashes people get from being allergic to pet dander.  After examining his blood, he concluded that it could also be from the ongoing fungus and may clear up when we get to the liver flush part of his treatment.

The magnesium/potassium wasn't doing the trick for leg pain.  The doctor said the other possible cause could be a low grade infection that typically starts after age 6 but can happen as early as age 3.  Thomas started complaining of leg pain when he had just turned 7.  As we work through the protocol we should be able to eliminate the leg pain. It had gone down but had started back up again when we stopped the mono immune so maybe now that we are back on that, we will get a handle on it.

When the doctor was done with Thomas, I let Thomas go out to the bathroom and then he sat with his book in the waiting room so I could talk to the doctor frankly.  I asked him for his opinion of the upcoming hockey season including the August skates.  He was skeptical about the August skates and didn't think that Thomas would be ready for the season come September.   He stressed the importance of not "running Thomas down".  He would get sicker if we overdo it.  He wants him to do the things he loves but we have to be very cautious.  If the borrelia gets under control then he should be able to handle the August skates at just an hour a day.  The doctor mentioned that Thomas was a very sick little boy and that this bacteria is very tough to treat.  As we go through treatment we will be uncovering other issues to treat and maintain his system.  He is hopeful that eventually Thomas' hair will regrow.   It is very likely that the Lyme bacteria was responsible for Thomas' ITP back in 2010.  It causes so many things!!

Joe and I are still discussing and praying about the hockey choices to be made.  We may go ahead and try the August skates.  They are Tuesday and Thursday mornings from 9-10 a.m.  It would give us a better idea of how it affects him.  Obviously, if it has a profound negative effect we would stop going.  I am very wishy-washy on trying them because I see how easily he tires.  He often lays down on the bench at our nook table after eating a meal and he still curls up in his bed several times a day to rest a bit.  It's harder for Joe to see the whole picture being that he is at work most of the day and often at sports practice at night.  However, Thomas is sooooo much better than he was.  He's reading again every day for long periods of time.  He's swimming and riding his dirt bike.  Overall he's made huge improvements.

We also made it to our chiropractor appointment and he approved Thomas for massage therapy.  The Naturopath was also in favor of massage for Thomas.  We are waiting to hear from the therapist to schedule his first session.  I am interested in trying Craniosacral massage for him to help with his headache pain. 

I am working on letting go of some bottled up anger and frustration in relation to the fact that this could have been caught sooner sparing him so much pain.   It's a classic story of those on a "Lyme's journey" from all the testimonials I've read about how long people suffer and how many doctors they visit before figuring it out.  Our doctor said some people he sees have been suffering for 15 years going from doctor to doctor before getting an answer. I am grateful that we have only been at this for a little over 5 years now.  

Thank you for your prayers!  Praising God for the small victories every day!!  I am seeing improvements even yet today after starting the probiotics and monoimmune yesterday.

Homemade chalk paint- alien fly guy to the moon

He cleaned his dirt bike all shiny before riding

Constant pain

Thomas has been having an increase in pain overall since I last posted.  He told me today that his whole body hurts; everything except his butt.  At least he still has his sense of humor!  We have made an appointment with our Naturopath for this Friday morning.  Hopefully, he will have some other ideas to try.  His leg pain is the worst but the headache is still constant and now he has pain in his feet, arms and back.  The leg pain is very frustrating to Thomas.  He badly wants to play hockey this fall.  We signed him up for a 6 session hockey skills camp in August- an hour twice a week.  Really hoping he is going to be able to participate and have fun.

It makes me sad to see him tuck himself into bed frequently throughout the day.  Sometimes, he snuggles under the covers just trying to get a break from the pain.   Othertimes like this photo he just plops down on the bed.  This was taken shortly after returning home from church.  Small outings wear him out.  

He likes me to rub his legs and feet and we are looking into massage therapy.  I have been making lots of phone calls trying to determine who to start with. 

We did have some fun this weekend going to a local park and wading in the creek.

 We are taking a break from the oils except if he wants any used when I massage his legs.  We tried them for almost 3 months and besides little moments here and there, we just haven't had the results we'd hoped for.  That's all for now.  I'll post sometime after our Naturopath appointment.

Michigan Adventure

Just a brief update today....  Thomas continues to improve.  He is participating in everyday activities including riding his dirt bike and swimming.  We also enjoyed a "play date" with some friends this week which included jumping on their trampoline.

Thomas was exhausted after but he had a good time and 

after resting was able to resume playing at home.  

On Thursday, we drove up to Muskegon to go to Michigan Adventure Amusement Park.  We had a wonderful time and great weather.  Thomas' favorite were the bumper boats because this year he was tall enough to drive one by himself.  I lost count of how many times Joe and him did them. 

We took a few "rest" breaks back at the van where we had snacks and kept him on track with his supplements.  He did fantastic all day and was thoroughly worn out by evening. 
Joe and I were very concerned about the "after effects" of such a day but we were thrilled when Thomas got out of bed on Friday and was doing well!!

Today we have a family picnic with Joe's side, so we are taking it easy this morning in preparation.  On a side note, we noticed Thomas has several warts on his toes.  They are caused by a virus and are more common with certain autoimmune disorders.  The good news is we are treating them with Frankincense and Tea Tree oil and they are getting smaller each day.  When Thomas saw them he said "Well at least they are not on my face, I would not like that!"  He's a trooper and we are loving seeing him smile a bit more each day.  The leg pain is still bothersome and did increase a bit again during and since our trip to the amusement park but we are hoping to get that back under control.

Wishing everyone a Happy 4th!