Choices and Decisions

I wanted to write a bit about what's been going on this past week.  This blogging/journaling is a way for me to organize my thoughts and keep track of what we've been learning or experiencing. I am also doing it so that Thomas will one day have something to look back and read- not that he is likely going to want to remember these days.  Plus we hope to be able to help other families searching for answers.  It's also an easier way to update friends and family all at once.  Thanks so much for praying for us this week!

We've had a few set backs this week likely from the increased activities that Thomas participated in the week prior.  Sunday morning he woke up around 7 a.m. and was back asleep by 8:30 a.m.  During the day his temperature climbed to 103.7 and stayed there.  He would wake briefly have a drink of water or orange juice, complain of a headache, aching legs and fall right back asleep.  He was like this until around 8 a.m. on Monday.   It was a little nerve wracking to see him so out of it.  The good thing with fevers is that the heat kills spirochetes.  I knew as only a mommy knows that this "sickness" was not just a virus or stomach bug and as now  nearly a week later with no other sick kids at home, I still think my instinct was on.  Joe and I both think he just overdid and his body shut down a bit to recover and fight the Lyme.    His dizziness (sensation of falling forward) came back and he had several days where he required some assistance walking off and on. The dizziness seems to have abated as of this morning and for that we are grateful. 

It's hard because most people don't really see what it's really like for him.  They may see him at a class doing okay, sitting at church or even at our home for a short visit.  What they don't see is how much that class or visit takes out of him.  He's a trooper and he will put on a smile and be happy for the diversion from his pain but he always has to rest and typically has an increased headache following.  For example he jogged to the barn today (in the front of our property) to visit my dad (his Pa).  After that excursion, he needed to lie down in bed.  He asked me to lay and hug him and rub his back for 20 minutes.  Then he read his books for awhile. 

When I called our Naturopath on Friday, he suggested that we try stopping the Cumanda and Banderol for a few days to see if they caused some detoxing and fever.  He stated he didn't think they did but it was something to try.  We decided not to discontinue for several reasons.  One we knew how much activity he'd had.  Two, it had been 11 days since starting those and typically he'd have the herx (dieoff/detox) symptoms sooner.  Plus the fever was completely gone after 24 hours and he's back to doing just how he was prior to the fever.  I really like our naturopath but we are beginning to realize that the set-up is not conducive to treating a complicated case like Thomas'.  He does not keep any files on any patients.  Each visit following the blood test, he writes his recommendations on a slip of paper he sends with us and away we go.  When I call he does not really know who my child is nor is he able to look back and review all of his issues.  I strongly recommend him to anyone to learn more about their health but if you have a complicated situation, I don't think it's the best way to go for long term care.  I will always be thankful that through him we were finally able to get a diagnosis.    

We are still researching a variety of treatments as we feel his progress has stalled and even is regressing.  This Wednesday we have an appointment for the NAET testing.  I am interested to hear what they have to say.  Apparently the initial list they will give us of things that he is sensitive to is likely to be quite extensive.  At least it will give us a broader picture of what his body is reacting too.  We are praying that in time this treatment will alleviate his headaches and leg pain.  However, the more I read and study Lyme it is very likely the Lyme itself embedded in his muscles and tissues that is causing much of the pain. When I told Thomas about the appointment, he looked at me and said "Mom, this is the last thing to try isn't it, we've tried everything else?!".  My heart broke with his big blue eyes gazing up at me.  I promised him we wouldn't stop trying until we found something that worked!

This is what Lyme in a 9 year old looks like.  Lots of resting between activities...

 

 

I made an appointment with the doctor in Grand Rapids as well but haven't decided for sure that we are going to explore that route.  I had a phone consultation with the doctor Monday morning.  It was a lot of information to process.  This doctor is not convinced that we are going to be able to beat the Lyme with just our current supplements.  She uses a wide range of techniques.  She is very knowledgeable and caring.  According to her Lyme is a "complicated process", "it plays havoc with the immune system, you have to get rid of the bug and then get rid of the autoimmunity".  Well, we certainly would like to reverse all of his autoimmune conditions too!   

The doctor in Grand Rapids typically does 5 Lyme treatments and uses a machine similar to Rife called a Pulsar. I am still reading the books on the Rife Machines but I will say I am leaning more towards purchasing one.  Chronic Lyme takes between 6 months to 5 years to heal from.  We have a long road ahead of us and the more "tools" we have to combat this awful disease the better.  From what I understand he would use the machine 6 nights and then have it off for one and so on for at least a year.  The frequencies put out by the machine actually kill the Lyme and co-infections.  Lyme life cycles range between 3-30 days with some portions sometimes surviving from 6 months to a year thus why it takes so long to get rid of it.     We have been in contact with multiple people who are or have been patients up there.  I spoke with one mom whose 7 year old went through treatment and he ended up having to repeat the 5 treatments three separate times which is another reason why owning a Rife might make logical (financial) sense. Joe also spoke with the husband (co-worker) of a patient.  She made some progress with this doctor but they may be looking at other alternatives as they have not  achieved what they hoped.  We also have a good friend who is in the midst of treatment and is currently very satisfied with the program.  It's an expensive option that insurances do not cover but we can use a HSA account for the treatments and supplements.  Everyone responds differently so what works for one person may not work at all on another.... frustrating ...... hard to know what to try next....

Snuggling with Big Sissy

I will also be meeting with a different chiropractor in early October, who does other treatments in conjunction with chiropractic care and has treated a friend of a friend's son who had/has Lyme.

 Meanwhile we are trying to continue on with routine activities like schoolwork and our home school partnership classes.  His ability to focus is slightly diminished as of late and school work takes a lot longer to accomplish. 

Earthing/grounding

He LOVED swimming class but it definitely wore him out