Lyme Into Lemonade

It's been a long time.  As much as things have changed, things have remained the same.  But, I thought it was time for a little update, so here goes.  We'll see how organized my thoughts are tonight. My last post was late March.  April included Easter, and finishing up our school year at co-op by the first week of May.  Then immediately, we went off to Florida on a trip to the beach for a month.  It was supposed to be great because John normally feels great at the beach.  I booked AirBNBs in Bradenton and St. Augustine to get a nice blend of gulf side vs. ocean side.  The day before we left, though, I received the results from a spore test for mold in our home from Mycometrics (it involves using an overpriced Swiffer dust cloth to collect samples from ceiling fan blades and tops of windows).  The LLMD claims if you are not getting better, you need to check for mold.  Houston, we have a problem!  We had several well known species o...

I've been thinking about the life we are living, and there are a few things that impact daily lives beyond what you might imagine.  Chronic illness and constant stress from it is hard to live with, but it is also hard to watch.  Sometimes people who believe they are helpful wish to contribute unsolicited opinions.  The devil's advocate in me believes they probably mean well, but the mama bear in me sometimes goes on the offensive. A little preface here.  My husband is a genius.  Literally.  And while I'm not a genius, I am very well educated.  I'm also fairly OCD.  I pour over major life decisions.  I research thoroughly.  I talk to my circle of health-oriented friends.  My husband and I discuss our parenting decisions together and we often include our sons in many of these discussions.  While we ask their input, we are in charge of raising them and our viewpoint weighs more.  Luckily, though, they typically agree with w...

Do you remember the Bill Murray classic movie, "Groundhog Day"?  The premise of the story is, Bill's character, Phil, kept reliving the same day, Groundhog Day, until he stopped making mistakes.  He replayed the same scene over and over and over again until he got everything just right.  Our medical life is starting to have this same feel, as our oldest son just got the same Lyme diagnosis that our younger son has.  While we remember a wood tick on our younger son, we do not remember an attached tick on our older son.  But, living in an endemic area, you just never know. So what does this mean?  Well, I suppose since Lyme can be transmitted mother to baby, perhaps I need to get tested.  Do I have symptoms?  Well, some but not all, and not nearly all the ones my kids have.  I didn't think Patrick had it because he presents differently than John, but here we are with the diagnosis. How do you know the diagnosis is right?  Patrick's doc...

I think last time I blogged, we were going to push detox using Desbio Metal Detox and Mineral Rebalancing system.  We had 3 great days, and boom.  Crash.  John wasn't feeling all that great again, and reported pressure behind his eyeballs, dizziness, and weakness.  Eyeball pressure and migraines behind the eyeballs translates to one and only thing for me:  IRON, particularly the storage iron form of ferritin. My father had low ferritin the month before he passed away.  I have had low ferritin for at least 8 years.  My oldest son, Patrick, has had low ferritin at least for 3 years.  John has had low ferritin for at least 5 years.  It's a thing with us.  The only thing that has made my levels move in any significant fashion has been consuming betaine, acid pills that help the breakdown of foods in the stomach.  Problem is, I have to remember to take it with each meal, and when everyone else is sick and I'm juggling their numerous su...

I've been having a feeling that we have a heavy metal issue.  Call it mom's intuition.  Detoxamin was what we were using, but the last time, he was hit so hard by it with side effects... lethargy, moody, a hot mess.  I started looking into ACC (Andy Cutler Chelation), which is a way to detox heavy metals very slowly.  But, then I remembered that 2 years ago, I bought these expensive detox  and metals and rebalancing kits  from Desbio on our MN LLMD's recommendation.  Shortly after we bought that, we moved, and it has been "out of sight out of mind."  Until yesterday. I told John what I was thinking about metals, and he agreed that Detoxamin was too harsh.  He was willing to give these kits a go.  It has a 60-day schedule that includes the homeopathic detox drops, liposomal vitamin C, liposomal ALA, and liposomal magnesium.  Each day is laid out with what we need to do.  It's day 2.  And something's happening. Who. I...

I realized it has been a while since I've blogged.  Got caught up in the lack of schedule over the last month.  Things are fully back to normal for us Friday, as we go back to our homeschool co-op.  It is a God-sent for us, as it gives the kids a different offering of classes from what we do at home, and it also gives them a social outlet too.  For me, it has given me a change to get back to teaching, as I teach Algebra 1, 2 and Chemistry. So, what have we been up to?  John and I were off to the western coast of Florida for the last 10 days.  We were hoping to reboot him a bit in his healing.  I've come to the realization that the more time he spends in the sunshine, the better.  We discovered kayaking through mangrove tunnels - what a blast that is.  There used to be a freshwater lake off the coast of Lido Key.  Residents there had realized that this lake was a breeding ground for mosquitoes.  The Army Corps of Engineers came in ...

We've been toying with doing the DNA Connexions Lyme panel on John in order to see what co-infections are there with his Lyme.  I ordered the kit, and managed to get him to do the 1 hour of exercise needed to complete the test.  We collected on Thursday night, and thankfully I had read the paperwork that urine shouldn't go out with Thursday-Saturday's mail.  They want samples mailed Monday-Wednesday to ensure that it doesn't warm up in a mail warehouse over the weekend.  While I had time to wait to send it in, I was having a nagging sensation in my gut that this wasn't the best use of money.  It's a $525 test, but it doesn't get all the co-infections.  Yes, I realize that no test gets them all, but all I've been researching has led me to believe he has Mycoplasma.  This test does not test mycoplasma. I have 2 weeks to refrigerate the urine before I have to send it in if I want to use it.  I decided to order Raintree's Myco supplement, and see ho...

A common symptom of Lyme and co-infections includes food sensitivities.  When John was first diagnosed with Hashimoto's Thyroiditis, I already knew dairy-free and gluten-free cooking and baking was my future.  I had been DF and GF for myself already when he was diagnosed.  But what has followed has really challenged my abilities in the kitchen.  My current ingredient restrictions and the reasons why are as follows... These are pretty much always an issue for John: dairy (causes upset stomach, loose stools, and it binds to the methylfolate receptors, slowing down all methylation processes) gluten (confuses the thyroid into attacking itself, plus American wheat is laced with glyphosphate/Round-up, which is known to cause destruction in the gut) eggs (causes gas and loose stools - this one kills me... hard to bake with gluten and dairy, let alone eggs.  I'd really like this sensitivity to go away as the nutrition in eggs would be useful) corn (causes extrem...

Remember that Meatloaf song, "Two Out of Three Ain't Bad"... well, that's kind of where we are at right now.  We seem to have both the fatigue and depression mostly under control.  The last hold out is the pain.  We've tried CBD oil (doctor recommended), Kudzu root as recommended from the Buhner book, lemon balm tincture, and one more tincture I can't remember.  We have tried Hypericum 30C, a homeopathic remedy given to us by our LLMD's homeopath.  Nothing seems to help the pain, and when I added andographis this week, the pain increased. That's the frustrating thing about Lyme.  You take something that is supposed to help, and you feel worse.  It could be a Herx reaction.  It can be an allergic reaction.  It can be maybe just weird timing and you feel worse because you're coming down with a cold.  Good think John knows the difference between them all, because a casual observer could never tell the difference. Today, John's at a frie...

I'm typically the one who does all the care taking around here.  Paul works, and we need him to concentrate on that so we can pay the bills and such.  But this week has been TOUGH.  Paul is out of town on business, so that leaves me single-parenting for the week.  But then... what seemed like a little annoying post-nasal drip for me turned into a full blown sinus infection that started hitting me hard on Tuesday.  It totally kicked my butt.  I had the highest fever I ever remember at 103.4.  I had to take a hot bath to stay warm.  My head felt so heavy and dumb, which isn't a good state as the primary caregiver of a chronically ill family member. I literally didn't have the energy to drive myself to a minute clinic.  I whipped out my at-home rapid strep test.  My throat was so raw I figured it was worth testing, but the test showed negative.  I looked in the mirror and saw stuff in the back of my throat.  I slept on and off f...

My mental gears have been turning lately over ammonia, and its relationship to Lyme.  Two articles that have my attention lately are: The Alkaline Brain Detox the Die-off I don't have much to say yet, because I don't know much what to do with this information.  I do know, however, that the first article specifically names L-arginine as a supplement to avoid.  The FAR Clinic used L-arginine in their medical smoothies.  Being that my son did NOT get better with the smoothies, or anything FAR Clinic related, we are avoiding L-arginine with the info above.

Last I wrote, John had a string of good days using Buhner herbs.  A day or two after that, the wheels came off.  This is pretty normal for us, but still discouraging.  He got a lot of pain and was having issues sleeping.  So, we had to pull back.  I was headed to Detroit for a hockey tournament with his brother anyway, making it a reasonable time to focus on detox.  In the past, a few days of detox usually helped things a bit.  But this time, I returned home to a kid that was no better. We started Buhner herbs up slowly again.  First item added was Japanese Knotweed.  This plant is a bamboo like weed that's considered invasive in some areas.  Similar to our hard to get rid of dandelion, the knotweed is a tough weed to irradiate.  The roots of this plant are known to be a strong anti-microbial that is effective in treating Lyme because it gets to the spirochete.  Japanese knotweed is high in resveratrol, the same antioxidant t...

Shut the front door, we have had 4 good days... like more good than bad.  I wish I could tell you specifically what caused it, but alas, this impatient mama doesn't always follow perfect scientific method.  You're supposed to change one thing at a time so you can tell what worked. But once my Buhner herbs came in the mail, I changed it all basically.  Again, note that our provider knew what my plans were and blessed it.  I don't do anything without discussing it with our care team. What for sure we added: scutellaria, salvia, licorice root, guo tang, Eleuthera, guaiacum, tryptophan, l-acetyl carnitine, extra magnesium, kali phos, and biomedic salts from Hylands.  The first 6 are tinctures.  Tryptophan, magnesium and carnitine are capsules.  The last two are homeopathic remedies. The first night, John's mood was greatly improved.  As I was helping him do his Spanish homework, we got to translating "winner, winner chicken dinner."  He got t...

Today, some of our new additions to supplements came.  While not all items from Buhner protocol have arrived, some did, and since John had a rough morning, I was ready to try them.  The things we added today are: SAM-e:  this is supposed to help all kinds of symptoms, including depression, anxiety, ADHD, and fibromyalgia. L-acetyl carnitine: this supports the mitochondria, which are our energy producing factories on the cellular level.  It is thought to give energy specifically to brain cells. Tryptophan:  heard of it before?  It's the amino acid that is responsible for making you sleepy from Thanksgiving turkey.  Tryptophan is required to make melatonin and serotonin.  In this case, we are hoping for a boost in his feel good hormones.  Some prefer 5-HTP as it's further broken down, and we've used that in the past too. If tryptophan doesn't work, we will swap it out for 5-HTP, which currently resides in my supplement graveyard. CoQ10,...

First, a small update.   I don't think the mat is doing enough to justify its cost.  We still have a few weeks to decide, but John has equated it to a glorified heating pad.  Paul has fallen asleep on it, and thinks it's comfy.  John said he can't sleep on the rocks because it's uncomfy.  For sure, it's warm, but  I'm not sure it brings any other noticeable advantages.  LDN has been rough the last 2 days.  John's noticed increased depression, and a lack of sleep no matter when we take it.  We discussed with Dr. K and she says to forget it for now.  Back it goes to the supplement graveyard with all the other things that aren't working now. And... drum roll please!!!  John's Paleo diet is either helping, or he's having a growth spurt.  He weighed 69 lbs. this morning.  This is up 7 lbs.  since July 31, and despite some gut issues.  Woot, woot!  We will take it. Anyway... I feel like I have Lyme ADHD. ...

Y'all know we are struggling over here.  As the days march on towards the end of our 90 day commitment to healing, we have decided to change things up.  Smoothies have always been a problem for John.  The hyperthermia has been no picnic either lately.  Matt at the FAR Clinic told us to change the goal temperature to 101, but it hasn't done a bit of good.  Something had to give.  It was the smoothie. Instead of suffering through this barely drinkable delight, John and I decided to put his nutrition in the old fashioned way:  through food-shaped food.  No blender.  No smoothie.  The reason why this switch was made now is: It's awful and I was afraid we wouldn't make it the next 18 days through both hyperthermia and smoothies, and hyperthermia is more important. John has been noticing increased food sensitivities to things that didn't use to bother him - right now, coconut and all things coconut are problematic, so that wipes out a lo...

My last post covered a healing PEMF mat and LDN.  Although it's rather early for both, I thought I'd report anyway. The mat is heavy.  Lugging it up the stairs to John's room was actually kind of hard because it's awkward, and it literally has over 12 lbs of gemstones in it.  He decided that sleeping on the mat while he's trying to rest is just too hard to do.  It's not comfortable, so using it overnight seems to be out for now.  He's used it intermittently otherwise, and while it's warm and toasty, the joint pain hasn't improved.  Maybe we need longer to determine a verdict, but if we don't notice any improvement in 3 weeks, it's going back.  I don't need more things that don't work. As for the LDN, he's not even one week in.  No improvements have been noted.  The blogs and experienced Lymies using LDN tell me it can take 4-6 months to really notice a difference.  OMG.  We don't have that kind of patience right now.  Poor...

I have a cousin who lives in New England who also has Lyme disease.  IV silver was the only thing that really helped her to feel better, so my aunt recommended I look into it.  Silver is a very old treatment, as some sources say it dates back to the 1000s B.C.  It is a natural anti-microbial and can be used to treat infections (it's been approved for this purpose by the FDA since the 1920s), clean wounds, and fight off general bacteria.  We have used colloidal silver on Bigdog when he was going through natural cancer treatments, and we use colloidal silver in John's smoothies per the FAR Clinic's smoothie recipe.  However, we've never used it intravenously.   Here's a website explaining how IV silver works for chronic Lyme. Our LLMD told us that now would *not* be a good time to start this.  She recommended we wait until we finish FAR Clinic's 3 month set of treatments.  The reason why is that John is already doing  a lot to kill off Lyme s...

It's been a while since I have blogged.  As much as things have changed, much has remained the same.  John is continuing to have very hard days.  He's very tired and has roving joint pain still.  We ran blood work and found low vitamin D again and low iron.  His thyroid looks good, so it's just the nutrient deficiencies and the Lyme issues.  The constant fatigue is tough to deal with, so he decided to  take a hockey break. He handled it better than I did, as I cried on and off for days.  It wasn't that he isn't playing hockey... it's the fact that he even had to choose to give up something he loves. We read in our local Lyme support group on Facebook that someone had cancelled an appointment with our doctor, so I tried to take the appointment 11 minutes after I saw the cancellation.  Nope.  Taken.  That quickly.  But, there was another slot, Tuesday at 9.  It took me 2 hrs 10 min to get to the clinic during rush hour. ...

Hockey is the one place my son feels normal. Lyme consumes many of his thoughts, so getting on the ice is his only escape. Today, however, was very different.  He met players on his new team, and apparently, a new teammate somehow knew John has Lyme.  This player is injured and was on the bench for practice.  The exchange with this kid was like this: Teammate: Wait, you have lice? John:  Huh?  Umm, no.  I don't have lice. Teammate: I thought you had a disease.  Leukemia? John:  No, I don't have Leukemia. Teammate:  But you have a disease? John:  Oh, yeah, I have Lyme disease. (Kid hobbled on crutches to get away from my "diseased" son.  Later on, the teammate's mom joined him on the bench.  Said kid was pointing and talking about John so obviously that John was aware of it during practice.) My son told me this story on the way home.  He said it was the first time that Lyme and hockey mixed and became inseparable ...