Lyme Into Lemonade

Yesterday was the first visit back to John's "local" Lyme clinic.  Local is in quotes because it takes 90 minutes to get there one-way.  We have been at this clinic for 3 months.  It's a neat place because they take a whole body approach, an East meets West take on healthcare.  John has seen the LLMD once, and was supposed to hold her plan for 6 months, but also see the homeopath there.  The homeopath has been a great experience for us.  She's very thorough.  Her remedies are all natural and easy to take.  She helps us work on one thing at a time, and realizes that there is a certain order we need to go in, based solely on how John's body handles the remedies.  Is that individualized or what? When we walked into her office, the homeopath looked over my son.  She thought he looked like he lost some weight, which when you're a 64 lb. 12 year old, is NOT a good thing.  I told her I didn't think so, and so we were off to the scale to ...

After finishing the two weeks at the FAR Clinic, we were supposed to continue the same general routine at home.  It's a bit more challenging at home, without the clinic staff encouraging John along.  We tried keeping the same morning routine as we did in Utah, but we found the hyperthermia was wiping John out too much to enjoy the rest of his day.  Since then, we have changed to doing our routine closer to bedtime.  It seems to be an improvement, as he's tired just in time for bed. We have been playing with the smoothie recipe a little. John's been having some tummy aches with the standard recipe, so I got in touch with Matt at the clinic yesterday to see what I should do.  I suspected the issues were either the peas or the pea protein, since we knew these were issues for John in the past.  I muscle tested John for peas and pea protein, and found that the peas caused him to be weak.  I reported back Matt about the peas.  He suggested we swap ca...

Our last day in Utah was a good one.  John was highly motivated to get everything done quickly to get home to his puppy, so the breakfast smoothie went down without a struggle.  He did his chest and back exercises, and then hyperthermia in the hotel hot tub.  His heart is still looking very strong compared to when we started.  We are very pleased with this, as it's the easiest change to see given that we have the oximeter.  Elanda gave John an uplifting, handwritten card and a Captain America t-shirt as a congratulations for completing his program.  She's so positive and fun to be around; we will miss her for sure. The health pod, PEMF bed with lunch smoothie, and G-force machine went as expected at the clinic. We had a brief chat with Rod, but honestly, we could have talked to him for much longer.  As an inventor, he has a lot of interesting projects that he's working on, and it's captivating to hear what he's creating.  With a couple hugs on o...

Today has been a bit of a rough day.  Treatment all went as expected, but John is not feeling well.  He has some migrating joint pain, and  he is feeling homesick.  He's been missing his dog fiercely today. We were hoping to go hiking this evening to check out Utah's scenic trails, by John just doesn't feel up to it.  Our last night was instead spent watching Seinfeld and the Simpsons.  Maybe we will get it later. We did have some good news this morning, though. During John's time with Elanda, we noticed that his heart beat looked significantly stronger on the oximeter. What used to be a tiny little beat and a farstr heart rate is now a stronger beat with a more normal heart rate.  This is about the only difference we have been able to note so far.  John's main complaint has been fatigue. His treatments are exhausting, so it's hard to notice a change there.  Here's hoping he will continue to improve. What upsets John the most is wh...

Today was a pretty good day.  John really kicked butt in the gym, increasing his reps on both exercises.  It was his last day in the hyperthermia suit, which he is happy to have behind him.  Everything else was standard.  His energy was pretty good, and his appetite is solid.  Things are still looking up. When I announced to family and friends that we would be in Salt Lake City for 2 weeks, one of my cousins told me he could hook John and I up at a virtual reality experience.  It is a Ghostbusters themed VR adventure that involved proton packs and simulated ghost fights.  We got faux slimed.  We torched the marshmallow man, which actually smelled like roasted marshmallows.  How cool is that?  John talked the whole way home about what he would design if he had the equipment and resources for himself.  Thanks for the fun distraction, Joe. We have spent a lot more time watching TV here than we usually do.  And since the...

Day 10 treatments are done for the day.  Everything went smoothly.  John slept well last night, and did fine on all his modalities.  The one thing we changed was his hot tub experience.  Elanda has been conferring with Rod about John's HR post-hyperthermia in the hot tub.  We have been noticing a pattern that he will spike at about 173 when he gets out.  Rod is concerned about the number, but Elanda and I aren't.    John recovers very quickly, and the spike is a pattern that is likely caused from the shock of his body going from the 103.8 degree hot tub and being rather still, to standing and moving out into the 85 degree room.  At the clinic, Matt hasn't been taking his HR after John gets out of the hyperthermia suit, so we have nothing to compare the spike to.  Today, we only got John up to 101.7, and we made his exit from the tub more gradual, but we still got a spike at 164.  I talked to Matt about it, and he didn't seem concern...

The last two days here have been challenging for us.  The fatigue for John has been keeping him on the couch after treatments the last two days, which means I am stir crazy.  When I am home, I can keep busy, but all I have to do here is eat, sleep, workout, read, watch TV or blog.  Sure, there's a good shopping mall right here, but after the month we have had financially, spending money at the mall seems foolish.  Something had to give. I am ecstatic to report that today was a breakthrough day.  John is sweating in hyperthermia more easily, and is less uncomfortable during the process. The smoothies are going down more quickly.  The stars are aligning.  Maybe we are getting him better?  Maybe there is less broccoli in the smoothies?  Today, we needed to get out of this lovely hotel and have some fun since he was feeling up for it. The highlight of the day by far was spending 6 hours with Elanda (FAR Clinic trainer and resident kid-a...

Most people with Lyme have issues with toxins, and the ability to get rid of them.  Toxins that need to be addressed include heavy metals like aluminum, mercury and lead, acetaldehyde and gliotoxin (byproducts of candida overgrowth), mold, and dead spirochetes from Lyme treatment.  This is a probably a short list, but it covers the bulk of what is fairly typical. How do you know you have toxins built up?  We did the Nutreval test from Genova Diagnostics and a hair mineral analysis from Doctor's Data.  Between these two, we were able to see that John had lead (despite no exposure to lead paint) and uranium (not sure where this came from.. I speculate drinking the city water supply down stream from 3M but it's just a wild guess).  His mercury came back normal, but he also doesn't have any cavities.  Side note: if you have cavities, you might want to look into getting the mercury back out of your mouth.  Research for yourself - there's a pretty big mo...

Today is day 8, and John has completed all his modalities for the day. The only oddity today was he had some collarbone pain on the G-force machine.  Matt suggested the spirochetes might have been hanging out there, and that's why he was feeling it. What would really be helpful is if I could get John to get to a deep sleep.  He misses his bed and his dog still.  Today, I am trying a new tactic with Delta.  I'm approaching them from the expensive credit card perspective.  See,  we took a trip to Hawaii in June and I got suckered into their Amex card.  Weak moment.  Anyhow, I haven't tried to see what power it could wield for me until today.  I called the number on the back of my card and explained to a lovely agent how my chronically ill son really is homesick.  His treatments end a day early, so can you get a boy home to his dog and bed?  She is working with Delta and is supposed to call me back. One thing I forgot to mention is...

The FAR Clinic is in Utah, where many Mormons reside.  In Mormon territory, many things close down on Sunday, including the clinic (not that we expect daily service).  John and I were on our own to complete part of his daily regimen at the hotel.  With smoothie resistance, John set a new record of not taking it but complaining about it for 2.5 hours.  So frustrating for him and me.  There is no outlet for frustration in a hotel room.  We aren't rockstars.  We don't break glass.  Instead we sigh a lot, cry a little, ask God questions that remain unanswered, and finally, stop resisting.  Smoothie down, we went to the other activities of gym workout and hyperthermia in hot tub.  Everything went as it should, even without our big personalities of Elanda and Matt. While we were finishing up at the hot tub, I got a text from my oldest son from home.  Patrick has some health issues of his own with Hashimoto's thyroiditis (autoimmune hy...

Since we are still in Utah for Lyme treatments and my son is too wiped out to do anything, I thought I would write about the history of Lyme.  There are a few different ideas out there about how Lyme all started.  Some begin to sound like tin-foil hat type conspiracies, some are just mere guesses.  I'll try to cover them all and tell you where I stand. There are definite facts that should be noted.  In the early 1970s, there was an outbreak of similar symptoms of an unknown origin in Lyme, Connecticut. Adults and children were reporting to their doctors that they felt symptoms such as debilitating fatigue, headaches, swollen joints, paralysis, and strange rashes. It took some time, but eventually, it was determined that the common event for these suffering Lyme residents was a tick bite followed by arthritic like conditions.  By the mid-70s, this tick bite and the symptoms that followed began to be thought of as a new disease, one different from others alrea...

Day 6&7 are supposed to be the toughest, and today is Day 6.  The medical smoothie was met with the stubborn demeanor of a 12 year old hell bent on resisting it.  Even with bacon, the smoothie wasn't going down today.  We were at an emotional breaking point.  Seems like when we start hitting it hard, the Lyme fights back and shows up in John's emotions.  He feels these feelings:  why me, why do I have to take all this stuff, for how long do I have to do this, why doesn't my brother have to go through this too, why don't you understand that I don't want to do this right now or basically ever.  It brings me to tears because as a parent, you never want to see your kid suffer.  And Lyme is pretty much all about suffering.  There's no hidden superpower here.  I want to take all his hurt, disease and pain and take the burden from him, but it doesn't work that way.  The best hopes we have are that God is preparing us for something bett...

Last night, John didn't feel up to anything. We got home to the hotel at 1:00pm, and he sat on the couch the rest of the day.  I really wanted him to come with me to walk to Harmon's, the best grocery store you can imagine.  Take Whole Foods and make the store twice as big, minus the pretentious air about it, and you have Harmon's.  I was on a mission for chocolate.  While John isn't supposed to consume a lot of sugar, sometimes the chocolate incentive gets the smoothie down.  I figure he's getting way more nutrition in the smoothies, since it's replacing two meals, and he's having chicken on salad for dinner.  A little chocolate to push through the hard moments is okay.  I found the chocolate and browsed the other aisles.  A grocery store like this when you have food sensitivities is a godsend.  In the frozen aisle, I stumbled upon a John-friendly treat at he's been craving for years:  cheesecake.  Actually, it was Daiya brand...

My last post didn't talk about how our evening went after the treatments at the FAR Clinic.  John had some major reactions to the treatments.  Matt warned us that it might be hard on day 6&7, so this took us by surprise.  We figure that the reaction John had was due to the addition of the Rife process that was added yesterday.  The reactions John has are typical and expected with Lyme treatments and they are called Jarisch-Herxheimer reactions, or herx reactions for short (also it's common to see this used as a verb.. as in, "He's herxing after the hyperthermia treatment.").  The basic description of what's going on is that when we kill the spirochetes, they release toxins into the bloodstream.. such givers these little creeps are.  The toxins create inflammation in the body, and with Lyme patients, it can show up pretty much anywhere since the spirochetes can go anywhere. For some it shows up as joint pain, for others it's headaches.  For John yes...

This morning we woke without having slept much better than yesterday.  While the new sheets definitely help, there's no place like your own bed. In fact, when Elanda asked John what he needed to sleep better yesterday, he said "my bed."  No one can argue that answer.  We checked his Fitbit for his sleep pattern, and he only got 1 hour of deep sleep.  The goal is 90 minutes, with the rest being light sleep and REM sleep.  There is improvement to be seen here. John likes a slow morning.  While eating an Epic Bar, he was testing himself with the oximeter they gave us.  His oxygen was reading 93-95, sometimes dropping to 92.  At this rate, the devise beeps.  Since we aren't real familiar with its use yet, John was having anxiety about the beeping.  Anxiety is a challenging emotion to begin with, but it's not helpful with the oximeter.  To get oxygen, your breath needs to be full and deep, and regular.  With anxiety, your bre...

Today was day 2 out at the FAR Clinic, and it was supposed to start with the green medical smoothie at the clinic. John woke up looking taller (I always think he should start a growth spurt, he's 63 lbs and 4'6.. which is kind of why people think he's 8-10, not 12).  He was also very hungry, so I reached out to Matt to ask him if we could let him eat.  He was given the green light on oatmeal but not fruit, which was explained to us later.  After oatmeal, we walked around Station Park Mall then we drove in for the chewy smoothie, which John said "tasted no bettter but complaining won't do me any good."  We were off to South Davis Rec Center to meet Elanda (personal trainer) and Rod (Clinic owner) and go through his exercises. South Davis Rec Center has anything anyone would want.  Two sheets of ice (woohoo!), indoor basketball, a few pools, some water slides, hot tub, full gym with weights and cardio... this place is ginormous.  We were there for a station...

We were to arrive at the clinic at 11:30, but we are used to traffic and left early. We arrived early and they were happy to get started right away. The first thing we did was do their legal disclaimer on video. Since these treatments are not FDA approved and are considered experimental, they have to do what most LLMDs do - CYA with legal forms. Matt was very patient and answered all of our questions as we went through this. After this was done, it was "go time." First treatment was hyperthermia. John is their youngest patient so far so the hyperthermia wet suit was huuuuge. The suit is meant for an adult probably 6' tall and John is 4'6" with shoes. John put on his swimsuit and climbed into the suit. They had to prop up his feet and arms because when it fills with water, it starts pulling on his feet and arms. Since this was Day 1, they wanted to go gently with the temperature. The water was never above 103, and for the most part, it was at 101. T...