December Changes

One big thing that we've changed this month is the amount of grounding time per day.  We had been steadily increasing Thomas' time on his grounding blanket but we really felt maxed out at 4-5 hours.  That's a lot of time to keep a 9 year old boy or any child for that matter on a blanket for!  On December 2nd we got the go ahead from our acupuncturist to try grounding overnight.  Thomas was very happy to have the grounding blanket on his bed as it meant one less thing he had to "do" during the daytime.  Between zapping, grounding and all the supplements we had to have at least 90 minutes to get it in every morning and then a repeat at bedtime plus one session in the afternoon.  Over the course of the next few days, his headache increased and he was more tired.  I knew he was detoxing but it wasn't horrible and I didn't want to have to back off the grounding blanket because then we'd have to do it during the day again so with lots of snuggles we made it through.  It took about 6 days before it didn't seem to be affecting him.  I was grateful that he didn't feel dizzy or horribly sick.   In addition to the grounding overnight, we added a new supplement called Ferra-Tonic which is an iron supplement.  Thomas likes this one because he gets to have it in organic apple juice so it tastes yummy.  He continues using Samento, Citrcidal, Diatameous Earth, Min-Col and Silver but the amount changes based on his muscle response tests each week.

We enjoyed making gingerbread houses from scratch again this year.

working on his gingerbread house

We have been researching the Bio-Mat more and gave the information to the acupuncturist to look into as well.  It's expensive but Thomas loved it when we got to borrow it from the massage therapist.  He said it really made his legs feel better.  His leg pain had improved greatly but it slowly is returning.  There are many knock off mats so we are trying to compare their features as well.




Thomas also enjoys playing with his friends Adam and Luke.  He plays hard and then has to rest after.  It does seem that he is able to play longer and he needs less recovery time but we still aren't to that point of "normal 9 year old activity".

Resting after a play date

On Dec.9th he was super frustrated and did not want to go to acupuncture.  He was fed up with doctor appointments and ended up sobbing in the office.  He ended up opting for the simulator as opposed to needles.  The acupuncturist asked if we'd cheated on the diet.  I didn't think we had except a cookie but it turns out I bought the wrong butter.  The reason he asked is because emotional breakdowns like that can result from a "toxin" entering the body in this case food that isn't good for Thomas.  We didn't figure out that it was the butter until the 17th when I brought in a bunch of Tom's regular food to have him muscle test him on it.

We headed back to the naturopath on the 16th. We ended up not attending our home-school partnership classes in the morning so we didn't have to leave for the appointment until 12:50 p.m.  Thomas' friend died on Tuesday the 15th after battling cancer for several years.  This week has been very emotional for Thomas and he wants lots of hugs and cried frequently so the break from classes allowed us to snuggle in the morning and just play.  We have been working on building my brother's Lego Pirate collection.  At the naturopath we were thrilled to see the difference from our Oct. 16th appointment.  There weren't any spirochetes outside the cell wall and when he "broke" the cell wall there were only a couple.  In October, when he broke the cell wall there were LOTS of spirochetes.  We are so thankful for the visible progress made. 

He built Uncle Greggy's Pirate Ships

November Update

He is a pro now at acupuncture needles!

It's been almost a month since I last posted so I thought I better sit down and record my thoughts and some of the things that have been going on for Thomas.  We've still had some up and down days but overall he's participated in more activities and played more than he used to.  This week has been a bit of a challenge.  His acupuncture treatment last Wednesday left him every tired and he mostly laid around on Thanksgiving.  Our acupuncturist noted that Thomas did not "gain" any energy but used his reserves last week and cautioned us to keep working on finding the balance of how much activity he can handle.  He was not able to increase the diatameous earth dosage either.   The week prior we went on a field trip to Shedd Aquarium with our homeschool group.  It was a long day for everyone but Thomas did well.

Our highlight for him on Thanksgiving was seeing him devour organic turkey breast, potatoes, broccoli and fruit (okay he tolerated the broccoli but everything else he savored).

  Friday morning he left with Joe and Chris for Chicago for Chris' hockey tournament.  It was bitter sweet because Thomas was supposed to be playing with his team in the tournament as well but we were thankful that he could make the trip.  It was quite a process to get ready for the trip as all the food for the weekend had to be prepared ahead of time.  So while making the Thanksgiving Day dinner, I also cooked tacos, spaghetti, lasagna and hamburgers to send with them.

Chris' team did not have a game until Friday night so they went to Lego Land for the first time before checking into the hotel.

Thomas had a wonderful time and of course Daddy bought him a new Lego set :-)

 He also swam some over the weekend but struggled with a headache.  His headache was pretty bad Sunday night and carried over into today.  We continue to use peppermint oil on his spine area to help with the headaches.  His leg pain also has increased again.  He spent most of  today laying down resting or playing quietly with toys.  He's also been enjoying making Minecraft Paper craft sets which we ordered off of Amazon for him as prizes for drinking his yucky supplements. He wasn't able to go to swim class tonight.

His hair is also starting to grow back  The pictures below are from March, April and November. There are still spots that haven't started growing back but hopefully soon they will too.  It's hard to tell if his Vitiligo spots (which the acupuncturist thinks are really from yeast overgrowth) are fading.  Mainly because they always look better in the winter as Thomas' tan fades and the spots don't stand out as much.

We have much to be thankful for!  

HOPE

If I had written this post earlier in the day, it would have had a different tone but thanks to our acupuncturist for his kind reminder this afternoon, my heart and mind are in a different mode.  He reminded me to focus on the hope that lies ahead namely the hope with have in Heaven one day and he encouraged me not to let Satan bring me or Thomas down.  I was feeling a little like Job (17:15) "Where then is my hope? Who can see any hope for me?" 

 In reality, Thomas had a rough week. He was "up and down" all week in how he felt.  Last Friday's acupuncture appointment left him very tired and by Monday his head hurt and he just didn't feel real good.  Tuesday he enjoyed playing outside for 2 hours with new friends in the afternoon but immediately laid down when they left and basically stayed laying down or sitting quietly the rest of the night.  Wednesday was our home-school partnership and like always he went all out for his gym class playing capture the flag.  Afterwards while he ate his lunch in the cafeteria his legs were really bothering him and he grew very sad when he didn't feel up to join his friends to play in the gym.  He had brought a bunch of Minecraft paper crafts that he made and was hoping they would stay and play but at this age boys like to run around more than do sit down activities.  By Wednesday night, he just wasn't feeling good and went to bed early.  He didn't get up until after 8:30 a.m. on Thursday and he said he felt sick all over.  He's also VERY frustrated with the diet restrictions and with not feeling well to play.  

So this afternoon we had another acupuncture appointment and Thomas is still dealing with some fungus issues so he treated that and now Thomas cannot have any fruit or sugar for 25 hours again.  He wasn't happy about that but I encouraged him that he can do anything for 25 hours.  After the 25 hours (tomorrow at 4 p.m) he can have Siggi's Icelanic Yogurt as a new food this week.  

Thomas was very brave and tried one actual acupuncture needle today before leaving.  We typically use a laser technique but the needles are more effective.  The hope is that next week, Thomas will be willing to have 8 needles put in and left for about 30 minutes.  Please pray for him that he will be brave enough next week to give it a try.  It's always the hardest the first time trying something out.  

I am also to order him the Diatomaceous earth and start him on a tsp. a day.   It won't taste good but it will help bring his silica levels up and hopefully help his leg pain.  It may also help him rid himself of any parasites in his system.  

Our massage therapist said she'd let us borrow her Bio Mat tomorrow for a week and the acupuncturist approved Thomas trying it out.  We are super excited to try it out.  It has infrared heat, ions and an amethyst crystal.  More info can be found at www.biomatbenefits.com

We are going to keep encouraging Thomas this week but also I plan to focus more on what he can do and not what he can't.  

Now I rest in 1 Peter 1:3-6; Praise be to the God and Father of our Lord Jesus Christ!  In his great mercy he has given us new birth into a living hope through the Resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade.  This inheritance is kept in heaven for you who through faith are shielded by God's power until the coming of salvation that is ready to be revealed in the last time.  In all this you greatly rejoice, though now for a little while you may suffer grief in all kinds of trouble.

8 in a row!

I left off in the last post with Thomas not doing so well.  By Tuesday morning (13th), Thomas was back to feeling the way he normally does and he was able to walk unassisted.  He likely experienced another round of detox from a combination of treating the Lyme frequencies and starting some supplements again.  We flushed his system with lots of distilled water. He had an amazing massage on the 15th.  He didn't want to leave.  I had to pick him up off the table when it was over.

Beginning Sunday night, he started having trouble getting to sleep.  He'd come out of his room several times after being tucked in which is not something he normally does.  It would take until 10:30 p.m. or so to him to sleep.  This happened Sunday-Thursday and Joe and I were exhausted as we usually go to bed ourselves around 9:30 p.m.  Friday morning was especially hard for Thomas because we had to leave the house at 7:45 a.m. for our appointment at the Naturopath in Indiana.  He still had some spirochetes in his blood.  After the initial look under the microscope, our Naturopath "broke Thomas' cell walls" and there were lots more spirochetes then.  He broke the cell walls by tapping on the top slide.  If you remember from other posts the spirochetes can change form and hide as cysts in the cell walls and when threatened they can change right back again.  Thus making them tricky to get rid of.  Even though the spirochetes are still there overall his blood cells etc...look better and there wasn't hardly any fungus present.  We are to use the Samento and Citricidal on a 2 week on; 1 week off program to maximize efficiency in fighting the spirochetes.  He suggested 2.5 mg Melatonin by Source Naturals for helping with the sleeping.  They were out which turned out to be a good thing as later in the day we had our 4th Acupuncture appointment and that doctor was not in agreement with using Melatonin with children in particular.  He said if we give him Melatonin his body will essentially stop making it and then we'd have to correct that later on.  He recommended a supplement by Standard Process (MinTran) that is essentially alfalfa.  Yup now Thomas takes 2 hay pills about 90 minutes before bed.  They did the trick, he hasn't had an issue getting to sleep since then!  I love his sense of humor about all of this and the crazy things we subject him too.



On the 16th we also started using the Harmonic Quad Zapper developed by Dr. Overman.  The zapper uses frequencies to destroy bacteria, viruses, spirochetes and more.  Thomas holds a "handle" in each hand wrapped in a damp paper towel and then we turn it on for 10 minutes.  It actually works in just 3-4 minutes but by waiting the 10 minutes the red blood cells get recharged with Oxygen.  I can't believe the difference since we started using the zapper.

Thomas had a fun crazy time at his sister's 16th bday and Pa's 60th bday party on Saturday.  I was so scared to get out of bed on Sunday fearing that it would be like the week prior but it wasn't.  The rest of the week went great.  He's played football everyday with Chris and some with Joe.  He runs around and laughs just like he should.  I feel a bit like I'm holding my breath or perhaps not taking a deep breath, counting all the good days in a row. We are at 8 today!

Also on the 16th at the acupuncture appointment,  we learned that what Thomas was calling dry feet feeling wasn't actually dry feet but an issue of toxins building up in his feet giving him that sensation. We were advised to increase his grounding time with his blanket and I am happy to report that it did the trick. His acupuncturist also explained about disease in a different way (he also did a much better job then the brief note I'm going to include here).  He basically said that before The Fall- energy was up on the earth because God walked on the Earth with Adam and Eve.  After The Fall, they left the garden and God's presence and that reduction in energy caused our cells to slow down.  And when cells slow down- disease enters in.

before haircut

This week we only had the Acupuncture appointment on Friday.  It went well.  He asked Thomas is he ever had flecks floating in his eyes?  Thomas said yes.  He then asked him if they were getting fewer since he'd been coming there and Thomas again said yes.  I was dumbfounded and likely had my mouth hanging open in bewilderment.  The acupuncturist looked at me and said "sometimes you have to know what questions to ask".  Turns out the flecks are from the liver being overloaded and not able to process the toxins out.  I wonder if that's what happens during the periods when Thomas won't read....

We also talked about his hair loss.  He said it's an endocrine issue and from an energy standpoint- heat rises and burns up the follicles.  Once we get his body back on track it should re-grow and be fine.  On the topic of hair, Thomas has let his hair grow out basically starting back in January when the bald spots were appearing in numerous places.  He hasn't wanted to get it cut but some people kept saying stuff to him so on Friday he decided he's like to get it cut/styled and was super excited.  I took him to a modern barber shop in town and the women seemed to know exactly what we wanted. Well needless to say she cut much more off than he wanted and he cried all afternoon.  He's super sad about it and absolutely hates it.  I'm just praying it grows back fast.  Maybe I'll have a picture in the next post but I'm guessing he's going to run if he sees the camera anytime soon.

Small set back

Friday the 9th was a busy day for us.  Thomas had a Cranio Sacral massage and then because his back was bothering him, he also was adjusted by our chiropractor.  After that we headed to his acupuncture appointment.  It went well and the doctor really thinks the grey around his eyes is breaking and he's getting his system back on track and eliminating some of the allergies.  This week's treatment included desensitizing the Lyme Frequencies. After muscle testing him, we started him back on Monoimmune which is a blend from the naturopath and a 1/2 tsp of silver (which is a really tiny amount).  Thomas seemed okay on Saturday- he's always a bit more tired after the treatments but other than that everything seemed fine.

Resting and Reading

Joe and I were really excited by his progress and were starting to get our hopes up that we were heading in the right direction to get our baby back.  I was even thinking about contacting some friends for an impromptu play date on Sunday.  Then Sunday morning I awoke from a horrible dream that still seems so vividly real even if not totally logical.  Basically the dream involved me being able to see through 15 weeks (the standard NAET treatment plan time), only to see that Thomas wasn't better and then it was weird glimpses of me literally driving him all over the States from doctor to doctor.  I cried in Joe's arms when I woke up- sometimes it all feels so hopeless but Joe was good at reassuring me that Thomas was doing better.  However, when I got up and went to check on him, he was in his bed reading and I just knew in my gut something was wrong.  After we snuggled, he got out of bed and walked to the bathroom outside his bedroom door.  I noticed his gait was off again and I asked him if he was dizzy.  He shrugged his shoulders and grunted- tell tale signs that he doesn't want to admit what was going on.  We proceeded to have breakfast and get ready for church.  Right before we were going to load up, Thomas climbed up into my arms and with tears in his eyes, said "mommy I feel real sick".  Joe ended up taking the other kiddos to church while I stayed and held him in his bed.  As the day progressed he became more and more dizzy and needed help walking from room to room.  He even reverted to crawling from time to time.

Crawling back to his room for a lego piece

Catching a ride on sissy's back

His whole body hurt and he was miserable by bedtime.  In the evening, he scooted on his bottom down the stairs with Joe and I watching, at the bottom he went to stand up and fell forward.  Joe got him safely back upstairs and on the floor to watch a movie.  He's about the same today.  I called the acupuncturist and he said that "die off" could be happening from treating the Lyme frequencies and starting the supplements and it may have been too much for Thomas' body.  We are to stop the supplements and see if he gets better- of course I'd already given him his morning dose....  Also need to push the distilled water through him and get him to eat a lot of greens.  The water part is easy, the greens not so much.  We may need to make an appointment sooner than Friday.

Thomas is back to enjoying playing Legos; which make a great sit/lay down activity for him. He is super frustrated with not feeling well.  He wanted to go with me to the store tonight to pick out a lego set with some money he saved but he wasn't feeling up to it.  I promised to text pictures but he still cried when I left.  I can't imagine what he must be thinking.  Joe and I feel so badly for him.  He has times where he starts feeling better and then he just crashes.  It's no way for a 9 year old boy to have to live.  That's all for now...

2nd NAET Treatment

I've gotten a little behind in updating but overall Thomas' has been doing okay.  He still is tired and some days he will take a couple hour nap but his pain overall is less and for that we are super happy!  He had his 2nd appointment with the acupuncturist on Saturday the 3rd.  It went well too.  The grey under his eyes is breaking up which indicates that his adrenals are doing better and he is sleeping deeper.  After muscle testing him with his current adrenal supplement from our naturopath it was determined that it was not a good supplement for Thomas.  Our acupuncturist felt that this may even be contributing to the bit of headache that hasn't gone all the way away yet, so we have stopped that one.  We also switched back to Samento as that tested much better than the Banderol and Cumanda.  The supplement changes did not surprise me because he stagnated and regressed when we switched to these in early September.  He is now back on his mineral supplement again too.

The 2nd NAET treatment included desensitizing a corn mix and sugar corn (high fructose corn syrup).  Thomas still cannot eat any corn or meat from an animal that has eaten corn.  His diet is really limited without the grains and dairy too but we are making due.  He may have to start another supplement in the near future since we are struggling with getting in adequate vegetables.

We ordered a "grounding" throw blanket as it has gotten too chilly to be barefoot most days and Thomas' needs around 30 minutes a day of grounding.  We will be working up to longer periods with the blanket when it comes.

I like how our acupuncturist explains everything to us.  He told us that disease is only 5% of the problem, that a failed immune system is the other 95%.  He's not hung up in diagnosis' but rather getting the immune system back on track so it can fight its' own battles the way God designed our bodies to.  He also described it in relation to mountain climbing.  There is a place in mountain climbing called the snake line, no snakes live above this line.  We want to live above the line/above sickness.  Many things harbor in our bodies but it is what are bodies do with what it there that determines if we are sick or not or how sick etc...  He also said "There should be a beginning to treatment and an end to treatment".  That may not strike you as much but when you have been trying things for over 5 years and seeing various doctors that really give you no hope to an end, then that statement refreshes you! He wants to get Thomas' back to his childhood and we are thankful for his attentiveness to our situation.

We are currently researching (at the recommendation of our acupuncturist) a Harmonic Quad Zapper (Dr. Overman) http://webdeb.com/zapper/hq5.htm

It basically does like it's name sounds and zaps the "bugs" in you.  Treatments are short only 3-30 minutes and we've read a lot of positive reviews on it even as something that works better than the Rife Machine.

On the 2nd, Thomas had a chiropractor appointment and he didn't need any adjustments in the upper back or neck and it had been 3 weeks since we'd gone.  When I told our chiropractor about removing corn from his diet.  He said there are 3 things that cause subluxations; trauma, thoughts/emotions, and toxins. It is likely that the body saw corn as a toxin and thus caused the subluxations which in turn resulted in increased headaches.  It never ceases to amaze me at how connected our body systems are.
The blood moon did not seem to affect him anymore than any other day and he enjoyed his brother's birthday party.  He also really enjoy playing dodge ball at our home school partnership for gym class last week.

Lego Class

Lunch break followed by electronic break with friends

I also attended a presentation on a different approach to chiropractic care called QSM3 with Aligned Care Chiropractic www.aligncare.net  The way they treat makes sense and they also do the muscle testing for supplements and nutritional support.  At this point though, we are happy with the progress we are making and plan to stick this course of action out for now.  

Our massage therapist was able to connect me with yet another person in the area who suffers from Lyme.  The women was wonderful to talk with and she owns a Rife machine.  She even generously offered to let us come over and run sessions on Thomas.  While this is not the necessarily the best scenario for using a Rife to treat Lyme as you typically need a regular schedule; it is definitely something to think about.

We are feeling blessed to see his smile more and his activity level increasing!  

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!

The Dizziness Returns.....

Thomas finished a portion of his protocol on August 14th,  It was a ten week treatment which really lasted 11 weeks because we started slow the first week in order to minimize the harsher side effects of the Lyme being killed off.

Last dose of the yucky stuff mixed in OJ

The first few days off went okay.  He also finished his mineral supplement on the 20th and the Naturopath said not to get anymore until his visit so we can see how he's holding onto the minerals.  He is still taking Monoimmune and CoQ10 twice a day and Iodine once a day.

On the 18th, he had a dear friend over for several hours and they had a fabulous time playing and swimming in the pool.

Thomas and Benny

When his friend left though he complained of a severe headache and just not feeling well.  The next day we had an outing planned with friend's who had rented a lake house for the week.  Thomas started out cautious and just wading in the water but then he went for a kayak trip and eventually started swimming in the deeper water.

Kayaking 

When we got home he was exhausted and mostly watch movies and read his books.  He said he was feeling dizzy.  I then found out that he was also dizzy after playing the day before.  Now these episodes were not severe enough that he was holding onto things or needing assistance walking as in some of the past dizzy spells.  He merely has the sensation that he is falling forward.

Thursday we took it real easy.  He worked on his schoolwork off and on all day and was able to finish around 4:30 p.m.  Yesterday morning, he told me he woke up at 2 a.m. to go to the bathroom and was "super dizzy".  I asked him if it was the dizziness when he had to hold on to things and he said "yes, he could barely get to the bathroom and back to bed".   He also told me "when I woke up in the morning I was still dizzy in my bed so I laid there for a long time before getting up".

Completely worn out

very tired- taking a break
from eating lunch

So now the dilemma is... is the dizziness related to stopping the treatment or too much activity?  Joe and I are leaning towards the too much activity reasoning mainly because back in July when I took the kids camping Thomas mentioned being dizzy again and he was still on the treatment but had had a lot of activity.  The Naturopath warned us to be very careful not to have him over do.




Now we are trying to figure out how to minimize his activity without making him depressed over not doing stuff.  For the most part he knows his limits but he pushes those when around other children or in order to do really fun things like swimming and kayaking.

We bought the boys RC cars and that has been a great activity that Thomas can do with his brother.
Yesterday, we had a chiropractic visit and Thomas is "holding his adjustments" well.  Our chiropractor checked him for any inner ear issues but all was well.  We go back in 3 weeks.  The 28th is our next massage session.  Looking forward to that as he legs still cause him a great deal of discomfort.  We are praising God for Thomas' smiles and his typically good attitude while going through all of this!  I love snuggling with him!

Changed personality....

Life and circumstances definitely do play a role in who we are and how we respond to situations.  I've noticed numerous changes with Thomas as we've been on this journey.  But recently one example stuck out to me of how it's even affected his imagination.  We were laying out in the sun after swimming one day and Thomas tickled me with a clover and said "oh no a microscopic bug bit you and now you have Lyme disease!"  It made me want to laugh and cry all at the same time.  The innocence of childhood has been corroded a way by an awful disease. 

Riding with Daddy

Jumping with Mackenzie

Thomas had his first massage on Monday.  We chose to try a CranioSacral massage with him with a small amount of traditional massage on his legs and feet.  The massage lasted 30 minutes. 
This is not the facility we go to for massage but I liked the description better on this site http://mtacupuncture.com/craniosacral-therapy/   He did fabulous.  I then had the same type of massage as well and it was fantastic!!  Thomas read books quietly in the room during mine.  We go back on the 28th for another massage.  I am really looking forward to helping heal his body through massage as well. 

Thomas had an adjustment at the chiropractor today.  He goes back in 2 weeks to be rechecked.  I am hoping it will help some with his headaches too.  I feel like we are developing a well rounded program for healing for him with the supplements, chiropractic care and massage. 

In my last post, I mentioned that Thomas would be starting hockey skills class on Tuesday morning.  Monday afternoon, we got word that it had been cancelled due to low registration numbers.  On Monday night, I met Joe at the ice rink with the boys for sticks and pucks which is basically open skate in hockey gear with sticks etc...  Thomas was very nervous about it but he wanted to try.  He did okay.  His legs hurt more and he moved pretty slow.  I also noticed how his interactions have changed.  Normally he is super confident and makes friends quickly with anyone his size.  He shied away from the other boys and did not exhibit the confidence he's known for at hockey.  It made Joe and I sad to see the difference.  Needless to say after much thought and prayer, we have decided not to have him play on the travel team this year.  The hope is that he can play on a house team as he feels up to it.  House teams do not begin practicing until October so that gives us another month over travel to work up his strength.  The house team also only meets twice a week for an hour at a time where travel teams are 4-5 days for multiple hours.  Thomas is super bummed about this as he's dreamed of playing on the Kwings since he could walk.  He's grown up watching his brother play and could not wait to be old enough for his turn.  We are being very positive with him in regards to this and letting him know that we will work hard with him to have him ready for next year.  His coach has been very supportive and willing to work with us as well. 

Thomas and Joe at the beginning before more people started skating

We are so very thankful for the improvements!  It's hard to comprehend all that he (we) have been through.  Sometimes it seems hazy recalling the moments when he wasn't walking and all the nights he cried himself to sleep in pain.  God is good and we know there is a bigger plan then we can see in all of this.

The article below is a very good read on Lyme.
http://articles.mercola.com/sites/articles/archive/2015/07/29/lyme-disease-tick-epidemic.aspx?e_cid=20150729Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=201507