Peace, the Moon, Germany and NAET

Oh my, we have been busy this week connecting with various individuals in our community who have walked or our walking a similar path that we are in trying to beat Lyme.    I've had a lot of long talks with God asking for wisdom and guidance as we choose what avenues to pursue.  My other request has been for a sense of peace.  One verse that was helpful this week was Is.26:12 "Lord, you establish peace for us; all that we have accomplished, you have done for us."

Archery lesson at Home-school Camp field trip

Crazy correlation but after my last post where I wrote about how Thomas was sick on Sunday to Monday with a high fever, I learned that there is a phenomenon related to the moon that many Lyme sufferers attest too.  Typically, during either a full moon and/or a new moon people with Lyme will experience an increase in symptoms.  Sunday (13th) was a new moon.  It's all theories people have come up with but some are in relation to the gravitational pull (like tides) and the fact that our bodies are mostly water.  Apparently the spirochetes move around quite a bit during this time and often split into two thus making the person feel worse.  Here's a site that explains it http://www.tiredoflyme.com/full-moons-and-lyme-disease.html.
It seems so odd yet I am curious to see if it really does seem to affect Thomas.  June 2 was a full moon this year and it was a HORRIBLE day for Thomas.  He didn't walk the whole day and could barely sit up on his own.   That date has been etched in my mind because I truly felt like I was losing him and the doctors had no answers.  Apparently this weekend, the supermoon is predicted to be especially bad for Lyme sufferers.  His brother's birthday is Sunday so I truly hope this is not the case but as this blog is shared with others in similar situations, I like to write on as many things as I can, that I come across.

I was connected via our massage therapist with a local women who suffered horribly from Lyme.  After 38 doctors including 2 solid years with a Naturopath, she was told that while they had "brought up her immune system, there was nothing else they could do to get her better".  She was then encouraged to explore a place in Germany called the Fach Clinic.  It took several months of prep including lots of supplements and the insertion of a port (like cancer patients get) here in the states.  In Germany, the first 6 days consisted of more supplements including things like IV Vitamin C.  Then you were put in a Hyperthermia bed while you were fully anesthetized.   They slowly raise your body temperature to 107 degrees and then for lack of better words "bake" you for 6 hours.  This kills the spirochetes.  Then you go through another 6 days of immune system prep including IV antibiotics.  These antibiotics are the really strong ones that are considered cyst busters.  This is needed because while the heat kills the spirochetes it does not destroy the ones that have turned into cysts.  Then back in the Hyperthermia bed.  You stay for a minimum of 18 days in special houses for patients.  Everything from air fare, room/board, all food- whole and organic, preparations, medicine is included together.  For her and her husband it was about $35,000.  It has been a year since she went and she is now able to enjoy life.  She walks and swims where she was bed ridden and not able to talk or read.  She still has some issues, tires more easily and she takes supplements still.  There are lots of kids over there being treated.  Many were there because of cancer.  One 7 year old boy came in with a brain tumor while she was there.  The boy was barely alive- not talking or able to sit up, after one time in the Hyperthermia bed, he was talking and watching cartoons.  They keep you on a dairy free, sugar free, whole foods and totally organic diet too.  The German doctors tell you there is no 100% cure but they can help you have a more productive life.  The website to get connected with the doctors is lymeandcancerservices.com/clinics/fach-klinik

On Monday, Thomas woke up super excited for Motocross at the fair.  This event has become a tradition over the past few years.  After breakfast, he decided that he was really tired and wanted to go back to bed.  He ended up sleeping for 2 hours and 15 minutes.  When he got up he told his big sister, that "now I am only 1/2 tired so maybe if I sleep once more before motocross then I will be able to stay up to see it".   He did end up resting for a little over an hour in his bed in the afternoon.  We had a great time at the fair playing some games and watching motocross.  His legs hurt a lot by the time we left but he did really well!

With Meme- Yummy Lemonade and he won a Ninja Turtle

Being silly with Pa

 Wednesday was our first NAET appointment.  NAET falls under Chinese medicine.  Thomas was muscle tested for a variety of things.  It's an odd procedure if you haven't had experience with it prior.  The doctor has substances in little vials and you hold onto them and he tests your strength while holding them.  Thomas is having huge issues with corn.  Lucky for us (heavy sarcasm) corn is not just corn but it is also used to make citric acid, maltodextrin, dextrose and xanthan gum to name a very small few.  Here's a website that gives a more comprehensive list (umm say like 150 different names of things made from corn) http://www.cornallergens.com/list/corn-allergen-list.php.  Now at first I thought "oh not a big deal to remove corn".  We've been against corn for awhile unless it was organic because all other corn is a GMO.  Then I find out that we have to remove all meat that has been fed corn. Thanks to Monsato and their Round-Up pest resistant crops, corn in America is the ever staple food. It's cheap so we feed it to virtually all our animals, make gasoline out of it and sweeten our foods with it.  The micro toxins in the grain end up in the fat and meat of the animal and Thomas' body is unable to handle it.  Thankfully, I was able to buy grass fed hamburger meat and steak at Earth Fare but chicken and pork are out, which also means no eggs.  The good news is that removing the corn from his diet should decrease his headaches!  I am hopeful.  I asked him tonight if he felt any different after having the treatment and he said "well my head doesn't hurt."  Praise the Lord!  Please pray that the headache stays away.  He has literally had a headache for 3 years.  We have started as recommended having him on a high vegetable, low starch diet with no dairy, grains or corn.  Doesn't leave much to choose from :-(  However these changes are not permanent diet changes although corn will take a bit longer to add back in and he does not recommend that anyone consume dairy products.   He also is to drink only distilled water.  This is because he is not absorbing minerals properly and until that gets corrected the distilled water helps flush out all the inorganic salts.  He said it would be 2-3 weeks on distilled water and Thomas likes the taste so that was easy task to work in.  When he first gets up he has to drink 8 ounces.  Then we set a timer for an hour for him to have another 4-6 ounces.  He repeats this hourly until 2 p.m. and then he can slow down on his water consumption.
Thank goodness or I'd likely have a lot of wet bed sheets to take care of each morning :-) 

He has to hold the vial for 20 minutes after the treatment

His first NAET treatment was called a BBF (brain body formula) and it was a neurotransmitter formula.  Thomas' nervous system is constantly working and therefore even though he is sleeping, he is not sleeping well.  That would explain the need for all the naps and lay down rest times during the day.  We opted for using the electro stem laser on Thomas instead of acupuncture.  Joe and I agreed that acupuncture needles at this point were liable to make Thomas run screaming out the door.  Thomas said the device just vibrated on the areas touched with it.  He also explained to us why grains aren't good for us.  Basically, a grain like wheat in unaltered state can be stored for thousands of years but as soon as it is milled or processed it becomes nutritionally dead in a few days so every single grain product you buy in the store has no benefit to you.  In the coming weeks we will be adding a supplement called Diatomaceous Earth- yup food grade dirt!  This will help with his silica levels which should make a huge difference in how he feels including his leg pain.  I asked the doctor how long before we would see notable differences because he stated that Thomas would improve rapidly.  I asked "by Christmas?" and he said "oh yes, before Christmas!".  We made appointments each week through the end of October at this point.  I just realized today that Christmas is only 3 months away from today so that means if this is the right treatment for him, he could be feeling a lot better in the very near future! 

I cancelled our appointment in Grand Rapids for now at the Complete Wellness Center as we want to give this a try.  Thomas does not like long car rides and for him anything over 20 minutes is long so if we can get successful treatment close to home that will be for the best.  However, we are not ruling out other locations.  A friend shared info on an office in Indianapolis, In and Joe has been researching a place in New York. 

Yesterday he had a great day and seemed more like himself.  Today he did great at swimming class and completed all his schoolwork by noon!  Feeling so happy and relieved for the moment at least :-)

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

Crazy Frustrating Disease!

I am feeling frustrated, sad, mad and even a little scared today.  Last night was a rough night and sometimes those "what ifs" start to rule.  Like "what if he doesn't get better?", "What if this treatment doesn't work", "what if his hair doesn't grow back" and on and on.   But backing up a bit, we enjoyed a wonderful Labor Day Weekend with lots of fun activities and Thomas did great all things considering.  After each activity he was definitely tired and needed a long rest period but the dizziness did not come back and he was able to do another activity the next day. It was nice for all of us to be able to do activities together as a family again.  It's hard to paint a clear picture of what it's like for him though and how normal kid activities are different for him compared to a healthy child. 

After picking apples for around 45 minutes, he needed to sit for a good 30 minutes before we he was ready for the next part of our trip which included a stop at a fun playground and petting zoo.  Then upon returning home, he spent a few hours in his room reading and playing video games.


Saturday we enjoyed going to the local bowling alley which also has a ropes course, go karts, putt putt etc...  After a round of putt putt, they decided to tackle the ropes course.  Thomas mastered his fear, thanks to the encouragement from Daddy.  He even did the zipline after many "backed out" attempts.

After that he wanted to go bowling, so we headed to van to get his sister's socks.  After the walk to the van, he was really struggling.  He leaned on the van and cried.  He wanted to go bowling but he didn't have enough strength left in him and his head was really hurting.  We settled for a 2 minute lazer game and took him home.  He rested and then slept in our tent with his sisters in the yard.

Sunday we decided to get in a trip to Lake Michigan.  The weather was beautiful.  We climbed the dune first.  The other kids and Dad made several trips while Thomas and I took it slow and eventually made it to the top after laying down in the sand for breaks.  After a picnic lunch, we went to play in the water and sand.  Thomas was sound asleep within 5 minutes of leaving the park.  It's sad to see a 3 hour trip cause a 9 year old to need a nap but that's what his body needed. We also had a wonderful time with fireworks.

Monday was a total rest day (at least for Thomas- the rest of us got in last minute summer chores).
We've started having Thomas specifically "ground" himself for at least an hour a day.  By grounding, I am referring to the principal of Earthing.  http://www.earthinginstitute.net/ We have him be outside barefoot connected to the earth.  The earth's magnetic field is supposed to help with healing and relaxation.  Many relate to it when you think how you feel after walking on the beach barefoot.  There are products out there like grounding sheets to sleep on and mats to rest your feet on but we decided since the weather is still favorable, we would check out the "free" version of grounding and see if we noticed any improvements before investing in a product.  Mackenzie just cracked me up while "earthing" with Thomas and myself, she said "couldn't we just add some dirt in his shoes!"  I almost fell over from laughing.  I love children!

I also called our naturopath and discussed with him Rife Machines again. http://truerife.com/ After letting him know the cost of the machine that was recommended for Thomas, he said it was not worth the money.  We had spoken with other alternative providers and they felt he would only use the Rife overnight and therefore the cost of the unit we needed went down to $3500 from $4500 but the Naturopath still said we would not get the benefit over the cost.  So we are putting that idea on hold for now.  We have connected with someone about 30 minutes away who could do sessions during the daytime with him; so that may be something we explore more.  I also have two books to read on Rife Machines and Lyme in the meantime. 

We are currently considering NAET http://allergychiropractor.com/how-does-naet-work.  This site describes it but there is actually a wellness centers in our town that offers it.  I have spoken to them several times but have not yet made an appointment.  Monday morning, I also have a phone consult with a doctor in Grand Rapids.  We know two families being seen by this doctor who have Lyme Disease.  I also have been in contact with another center in Reno, NV.  They have been fabulous to talk to and have sent me wonderful information.  This is a last resort on our list at this point as it is an extremely expensive program (Joe estimates based on what they sent plus hotel/airfare, food etc.. about $40,000 not to mention I would be living out there for a month with Thomas).  They would also have to approve him as they typically don't treat children under the age of 12.  http://www.sierraintegrative.com/  A friend of mine from years ago actually moved out to that area and went through treatment with them and is doing fabulous.

This week started our home-school partnership which includes classes on Wednesday morning.  Thomas had a fantastic time.  His first class was Lego Builders and it was 45 minutes of building- what could be better.
Then he had gym class.  I watched him for awhile as he played capture the flag.  He captured my heart as he pressed on to keep up and even surpass many of the kids in the game.  I was VERY nervous that the running would be very hard on him.  His last class was art and he enjoyed painting.  I enjoyed not having to clean up that mess (think 9 year old boys with paint brushes that magically turn into swords) :-)  Wednesday night he complained that his legs really hurt.  They continued to bother him on Thursday and he wasn't really wanting to go to Racquetball that evening but we encouraged him to try.  He ended up having fun with that.  However bedtime had him in tears from the pain.  He said his legs were a #10!!!  His head was hurting too.  He fell asleep while I massaged his legs and feet and thankfully slept the whole night.  The other downside we've noticed the past couple days is that he's not reading again.  I've tried asking him what happens that makes him not want to read but he hasn't been able to put it into words.  He did say this afternoon that it kinda makes him sick sometimes.  This is SOOOOO FRUSTRATING!!!!  Reading is something he loves and it is such a great quiet time activity for him but when he feels badly something goes awry and he doesn't read.  He still is able to play Minecraft or watch his brother play.  We've also struggled some with schoolwork but he does eventually complete all the assignments for the day it is just more spread out then it typically would be. 

Today he had swimming at the Y.  He LOVED it.  He got to jump in the deep end and he swam all around.  I am praying that this wasn't too much.  We also went to the chiropractor today.  He had a few adjustments but was doing well.  Next week he has another cranial sacral massage scheduled.
 
I wish there was more support for this disease.  I wish more people knew and understood it.  It's hard when you have a child who looks "normal" and isn't.  I wish I knew how to find the balance between what he can do and what is too much. 

Naturopath Visit

Yesterday, we made the trek to our Naturopath.  Since our previous visit on July 17th, Thomas had finished part of the program set up for him.  After finishing that part, we did notice that he seemed even more tired and he began off and on to mention that he was feeling dizzy again.  He's still suffering from leg pain and now complains of foot pain especially in his heel.  I really feel like his gait is off and it often looks like a struggle for him to walk.  This trip around showed that his adrenals were suffering which could explain the lack of energy so we have a new supplement to help boost the adrenals and give him some spunk.  His mineral levels were holding steady after being off the mineral supplement for a few weeks but since it is his favorite supplement as it gets mixed in OJ and tastes like "cherry orange juice", we decided to give it to him three days a week rather than every day (Tues/Thurs/Sat).  He also got started on a "maintenance program" to help prevent Lyme Spirochetes.  The good news was this visit showed no "loose" spirochetes, it did however still show them attached to the cell walls.  Lyme is known to re-hatch so hopefully this maintenance program will do the trick in prevention.  His heart rate was stronger and more steady so we were able to reduce the CoQ10 to once a day.  We go back in 6 weeks to check how things are progressing.

Diet wise he is to avoid all "bad fats"- french fries, potato chips and any fried foods.  He doesn't have those foods often anyways so not too big of a deal, other than on the 21st he's looking for to Motocross at the fair with Meme and Pa, so we will have to come up with some "fun" fair food for him.  We are to continue with chiropractic care and the cranial sacral massages but infrared red saunas was not recommended due to his age.  We did talk to the naturopath regarding Rife Machines and he was in favor of them but not as a sole treatment of Lyme which was never our though either.  We are currently researching the options.  There are a few places that offer sessions with the machine but the protocol to aggressively attack the Lyme requires daily sessions 6 days a week plus over night so it would be best to own our own.  The Rife machine he would need is just over $4500.  The company True Rife is actually located in Parchment, Mi which is around 40 minutes away from us. We will be committing this potential purchase to continued prayer and will also be contacting some of the wellness centers that utilize them as well.  We have been off and on researching the rife machines since April of this year, it's just something we are more actively considering.  The package we would purchase would include a grounding sheet for his bed, which is also something we have been considering.

The naturopath does not feel that Thomas will be able play hockey in October either.  He did approve him trying the classes (swimming/racquetball) at the Y starting next week.  He hopes that Thomas will continue to improve and his energy levels and what he can do will continue to increase.  It's okay for him to get tired but not worn out.  Hard balance to maintain.  We are super thankful that he loves to read (and is able to do that again) and that he enjoys watching movies or playing Minecraft during rest times.  He is also really enjoying driving his RC Car.  His Pa came over and used a brush hog on some of our property in the back and then lent us the tractor with a scoop and helped make an awesome course with jumps and everything.  Thomas has been able to help, Joe and Chris some with the hand work involved in making the course spectacular too.

 We also enjoyed a fun couple of hours at Lake Michigan.  Thomas was thrilled to climb the dunes with his younger "cousins".

Burying himself to keep warm

I get frustrated sometimes about the things we "can't" do or why we have to limit visits and outings.  I am trying to be thankful for how far we've come but I'd be lying to say I didn't get discouraged now and then at how far we have left to go.  We've eliminated the debilitating dizziness and severe headaches but it hurts to watch him still in constant daily pain.  I believe progress is being made and  we hold to that slow and steady wins the race motto.  God has big plans for our little buddy.  I pray that we will be able to help others through this journey and ultimately when he overcomes all of this!