Cowden Approach

      We've been using the Cowden Protocol for Lyme since June 3rd.  It started out fairly easy but has gotten progressively worse as it was recommended for Thomas to reach adult doses in all the supplements due to the severity of his Lyme.  It took us until the end of month 3 to reach those high doses as increases made him sick and we'd have to wait several days before increasing again.  We then repeated month 3 at the top doses for 3 1/2 weeks.  His headache is constant and he has severe neck pain.  The naturopath started him on a course to treat a non-infectious form of meningitis caused from the Lyme getting locked up in his neck in the cyst form.  This last week has been particularly rough with little relief from the severity of the head and neck pain.  We are trying massage and reflexology at home.
          He's becoming more frustrated at not being able to play normally.  He misses skateboarding.  We've completely given up on him playing hockey but he was enjoying skateboarding.  He made it to his lesson on Saturday but really struggled and needed several breaks. His coach is awesome and sat with him talking about skateboarding and making it seem completely normal to sit and rest.  It was hard to see him so unsteady and falling a lot.  The pain supplements bring very little relief if any.  We are using comfrey and  Teifu topically for his neck and shoulders.  He is not able to read and most days is unable to complete much schoolwork. A device called the Bemer was recommended to use for relief from the pain but it costs $6000 and there is no guarantee so we are skeptical at this point.  The naturopath recommended that we rent one but it doesn't seem possible in this area.
       We continue to try to focus on the positives with Thomas. Every night we highlight one fun or amazing thing that happened that day with our special routine of "You are brave, You are Strong, You will overcome in Jesus name, You are a warrior who (fill in with something fun from the day).  Some days it's hard to find those blessings but we are working to see some good everyday.  We heard a wonderful song on the radio and were then able to find it at home on his ipad.  It's called Warrior by Hannah Kerr.  We make it a point to listen to it everyday
https://www.youtube.com/watch?v=yQpKSpgrwQE

Good Days Bad Days The Ups and Downs of LYME

Today is day 39 for Thomas using the Cowden Approach for treating Lyme Disease.  Originally we were to be working up to 15 drops of the main "killers".  We made it to 12.  Today we traveled to Thomas' doctor in Indiana for a quick blood and urine test to evaluate how the treatment was going.  Overall this approach hasn't been horrible.  Thomas has had many "good days" where he plays and the pain doesn't overwhelm him.  Then there are the bad days, the days that are so mentally, physically and emotionally exhausting as a parent.  The days when he lays around in pain.  His legs will ache, his neck will be miserable and his head will pound.  It's a blessing when he falls asleep as it passes the day more quickly.  Last Saturday was one of those days.  It really started Friday evening with pain that didn't allow him to stay asleep thus multiple tuck in's were needed then on Saturday all his symptoms were in full force.  I spent much of the day rubbing his back and neck, trying oils and alternating between heat and ice.  Sunday dawned and his symptoms had decreased enough to even take him with his siblings to the beach for a few hours.  He didn't swim but he did play in the sand a bit and enjoyed a picnic dinner.  We even got in a short hike.  Lyme is ridiculous in its ups and downs.  Its one of the hardest parts to explain to friends and family too.  He can be fine one day and not the next or even one morning and not that afternoon.  I mentioned to the doctor today that he had had some good days but then there were the bad days.  He reassured me that this was completely normal with Lyme.  Symptoms come and go thus why diagnosing is initially so tricky.  He also noted that it is hard because some people will observe the child happy and playing one day and sad and quiet the next and think depression or that the child is being spoiled.  The truth is the symptoms come and go and some days it's all he can do to put one foot in front of the other because the pain is constant.  Some days he can't read and other days he might be able to devour a whole book.  It's frustrating to say the least.  I am every so thankful for faithful friends and family who hold our family in prayer and are there for me to lay my fears out to.  I am blessed with friends who point me back to Jesus and his everlasting love and care when the doubts and tears come.

So the good news today was that his blood sample did not have the spirochetes.  It did have the bacteria in the cyst form which is what makes Lyme so tricky to treat as you may recall from my other posts.  Lyme can be a worm like spirochete freely swimming around attacking everything but it can also go into cyst form and hide.  Then it comes out when conditions are more favorable.  There weren't many cysts which is great news however with chronic Lyme it gets into the deep muscle tissue thus causing Thomas's symptoms still.  He needs to go stronger on the killers and some of the other support drops.  We are to work up to 30 drops of each kind potentially at a quicker rate that the increase every 3 days that we had been doing.  It will make him feel bad until it is all killed off.  He's likely to have some cognitive issues to as Lyme crosses the blood brain barrier causing more problems.  The urine test showed that I was actually giving him too much water- poor kid.  I followed the directions in the book not taking into account his size and that that would be for an adult so now he only has to have 50 oz a day and he drinks it a little bit every 30 minutes.  That will be so much nicer for play-dates not to have to interrupt him every 15 minutes.  The doctor was confident though that we should start to see his hair grow back.  He's lost quite a bit including several patches on his legs.  He had low enzymes and protein linkage which is a digesting issue but his liver was functioning much better.  He had no yeast this time and only a few protoplasts.  The other good news is that his minerals were up so the lower dose 4 times a day seems to be helping that.

We will keep fighting this battle.  Every night we still repeat " You are brave, You are Strong, You will Overcome!"  Then we add something like you are a warrior who...... and fill it in with something fun or silly he did that day.

Our cupboard is overflowing with the supplements and pills.  Its a job to keep it all straight.  I am thankful for the printed book that comes with the program but I have to go through and change the dosing numbers based on what the doctor recommends so it can be time consuming.  Everything has to be mixed in a certain way and then it has to sit for some long.  The drops can only be mixed into spring water.

We venture south again to the doctor on August 15th.  Please pray with us that this approach will win this battle once and for all!

The Latest Approach For Our Warrior

Unfortunately after we chose to stick with the dosing recommended by our in town doctor based on muscle testing, Thomas did not improve.  Instead his hair has fallen out in multiple spots.  While he still sports a long hair style that's able to cover the spots which are between a quarter and half dollar size typically; he now is losing hair in the middle top of his head.  Our local doctor ventured to guess that the hair loss was from EMF (basically wifi emissions) and suggested grounding outside (being barefoot) in addition to continuing to use his grounding blanket on his bed.  We were not convinced with that theory as he has experienced hair loss in the past so why now was it wifi related.....  With that and no reasoning for Thomas' increased fatigue and leg pain we were on alert that something was not right.  On June 2, after returning from a fabulous vacation with the whole family we had an appointment with our Indiana doctor.  He leveled with us that the spirochetes were extremely high again, there was visible damage to the cells and biofilms were present.  Lyme loves to hide in the biofilms making it impossible to destroy unless you can break through the biofilms.  We committed ourselves to using the treatment that he recommended since the other course just wasn't attacking it enough.  The program is called the Cowden Support Program and it is intense.  Our doctor helped us modify the dosing to be appropriate for his size.  We also are only increasing the dose every 3 days to help the die off be more gradual.  Sadly, once it is being effective Thomas will likely be sick for 6 weeks.  He now has various meds 9 times a day plus he has to drink 2 ounces of water every 15 minutes.  Drinking the water in the small amounts frequently helps to hydrate the cell more fully then drinking larger quantities less frequently.




Today is Day 20 on the program and up until  yesterday he was doing extremely well.  Yesterday the dosing on some of the "killers" went up to 7 twice a day and Thomas had a headache.  Today he is very tired and is neck hurts.  Next week he has skateboard camp, which was his birthday present from us and he is super excited to go.  We are praying hard that he will feel well enough to go.



In the evening, he has a lot of extra doses that we do our best to split up but that means taking meds every 30 minutes after dinner time and before bed.  Since tonight I will be at Chris' hockey game, I have lined everything up with labels.  (picture above)


The Cowden approach is typically used for 9-12 months.  We will be going to the Indiana Doctor monthly and we will not be using are local doctor for now.  We've also been in contact with a place in Arizona called Envita.  Their approach is both holistic and traditional with IV therapy.  IV therapy is done M-F for 8-10 weeks and the cost ranges from $40-$90,000.  We have not ruled it out but as it stands right now Thomas is barely old enough to even be considered as 11-13 year olds are case by case.  We also heard from our doctor in Indiana that he is now treating someone who did their program and did not get well.  Our doctor recommended Hyper-thermal treatments which we've explored before and are only available in Germany and Mexico.  He also suggested UV light therapy.  Essentially this would consist of a doctor removing 200 cc of blood and running through a UV light and then putting in back into Thomas.  We are of course praying that this Cowden Approach will do the trick but at the same time we are being mindful to continue researching future options.

Our Warrior

When I left off in the last post, we had just been to our Indiana doctor and had a new regiment to work through.  Our local doctor agreed with the approach but not the dosing.  He did not want him on as high of dose as it was recommended by the other doctor.  So we decided to continue to work with the local doctor until our next appointment in Indiana.  Thomas is back to visits every 2 weeks in town.  Today we had yet another NAET treatment plus muscle testing for his various supplements.  We will be increasing most of them so please pray with us that the detox will be effective and yet not miserable for him!  His Lyme is still active and his adrenals are not working as they should.


I am to journal everything he eats and how he feels each day to see if we can track any pattern to his "bad days".  Thursdays are typically "bad" days and it was this way yesterday as well.  It is likely from "over activity".  We have a full (very fun) Wednesday with our home-school group followed by hockey practice.  This time on Wednesday Thomas had a headache during partnership.  It was so bad that he came and told me and then was not able to participate in Lego builders because "looking at the instructions hurt too much".  For those of you who know Thomas; Lego's is a HUGE love so I knew he was struggling more than typical.  On Thursday I wasn't overly surprised when he laid around the whole day.    He did his math and a few other school items but mainly rested and watched TV to recover.  Those days are so hard to watch him struggle and not feel well.

 It's a fine line between
what is too much activity both emotionally and physically.  While it would not be emotionally healthy to take him out of sports, the sports do wear him down physically.  We have to work at keeping him extra hydrated and his energy levels above the  invisible illness threshold.  I had a conversation regarding this with our doctor and he talked to Thomas about what he loves to do.  Thomas loves hockey and lacrosse and playing with friends.  To eliminate those things would likely cause depression which in turn would lower his energy level thus giving the Lyme a stronger foothold in his body.  
Our doctor again recommended Sacred Frankincense to help.  I think we are going to try it again.  Its about $90 a bottle so its a hefty investment that we've done before but can't for sure say that it made a huge difference.  It is hard when you are trying so many things at once to know what is really working and what isn't doing anything .  He was using it previously and he had good blood work results and was feeling good....  His doctor says we need to figure out what we cut out that he must have needed to be able to fight the Lyme.

The doctor today spoke with me regarding the need to keep Thomas emotionally stable as well as physically well.  If he is too stressed or emotionally unhappy it brings his energy levels down and the Lyme just battles on reeking havoc on his whole body.  I have to keep my emotions positive around him too and not let him pick up on anything negative feelings like worry etc...  We have been continuing our "I am brave, I am strong, I am a warrior, I will overcome, I am a warrior" mantra but I know I harbor feelings of worry and doubt coupled with frustration at not being able to find a cure.

Yesterday in one of the home-school classes I teach I had one of those "I would do anything to take this pain from you moments".  Several of the boys were talking about how they were recently ill and recovering from colds that "lasted forever" at "3 weeks" and how with a pill everyday for 10 days they would be all better.  Thomas quietly said "yeah like Lyme is forever".  The rest of the boys kept on with their building but my heart broke a bit in that moment.  If only he could take a pill and in 10 days wake up all better.....

He got to ride up front in Pa's truck to his doctor because our vehicle was in the shop.  Might need to borrow it for the next appointment so I can see his beautiful smile :-)

It's so hard to describe what he goes through especially because the "good front" he puts up when he does participate.  Most kids and parents he encounters wouldn't have a clue what he is going through.  He is definitely a warrior and pushes through whatever he can in order to do a gym class or a sports practice.  It's at home during those long hours of recovery, the tucking him in at night with ice packs lining his body to calm the pain, rubbing peppermint oil on him during another headache, massaging his calves as they ache, the hours of supplements, doctors appointments and treatments that you see the true picture of Lyme and the devastating effects it can have on a child.

You are Strong! You are Brave! You will Overcome!

You are strong!  You are brave!  You will overcome!  You are a warrior!  This is what I have been repeating to Thomas.  He likes to add "yeah but I am warrior without a knife or ax" (whole other story there).  Yesterday was a rough day emotionally for us.  Thomas had a doctor's appointment in Indiana which the whole family journeyed to.  The news was not what we wanted to hear but we suspected something was off since he started having more symptoms beginning in January and continuing until now. He's been more tired and his hair starting falling out again.  Thankfully he's been able to attend his hockey practices and games but I will tell you that some days it is his sheer willpower forcing him to participate.  He tells us he "never wants to miss a game or practice every again!", even though he doesn't feel well many of the nights.

His blood work showed spirochetes (Lyme bacteria) in the cells and cell walls.  He also had odd shaped cells which indicated liver congestion.  He was low on enzymes and showed protoplasts and liver spiracles which also indicate liver issues.  The Lyme has been hiding out in the deep muscle tissue.  Thomas is also having digestion issues; basically leaky gut so things that should stay in the gut are leaking into his bloodstream.  He also had some yeast overgrowth in his blood. 

We have a whole new regimen of supplements including 2 that have to be done on an empty stomach which is tricky with a kid who snacks a lot :-)  Lots of new yucky tasting drops.  They from the Cowden Approach to treating lyme.  He cried big sobs when we got home and started them.  Today he was a rock star so far and has got them in.  The drops we are going extremely slow on as we have to get him up to 15 drops of 3 different kinds twice a day but for now we are doing 1 drop of each and slowly increasing over the month.  A year and half ago Thomas had a tough time on one of the drops and we had to stop it.  Hopefully, he will tolerate it this time so it can kill the bacteria.  We do have BurBur this time to use to help counteract the ammonia from the detox that is given off from the yeast and spirochetes dying off.

Unfortunately, all the new pills and drops will likely cause a detox which is good in that it means the bacteria is dying and getting out of his system but bad because it will make him feel terrible.  I shudder when I think back over the other times of detox where he just laid on the floor too dizzy or in too much pain to walk and I don't want to even think about doing that again!  Hockey is winding down and we are hoping to time the worst of the detox for in between hockey and lacrosse season.  If this course doesn't work we have a stronger course to pursue.

Tomorrow we go to our local doctor to finish fine tuning this approach and have a NAET treatment.  

Prayers for strength, wisdom and understanding are greatly appreciated.  Yesterday and this morning I was a mess of tears but after some prayer time and reflection I am ready to keep my head up and battle this.  

  

NEVER ENDING

There are days, weeks, months on this Lyme journey that just drain you emotionally, spiritually and physically.  I cry out to God when will it end, when will my son be healed and no longer in pain, when will our family be able to put this journey behind us.  The doubts creep in, will he never over come or will there always be times when it flares it's ugly head.  I know in my heart that there's a purpose, a reason and that we are learning so much as we go forward.

I haven't update in awhile mainly because I haven't set aside time too but as I want to chronicle this journey for Thomas I am going attempt to think over the past two months.  The holidays were amazing and we enjoyed Daddy being home from work with us.  Thomas did really well and we made sure that his foods throughout the whole season were within in his diet guidelines.  We discovered a delicious banana cake recipe made with almond butter and a small amount of honey.  Topped with creamed bananas and coconut milk for frosting quickly became a new family favorite.

 After the holidays Thomas slowly seemed to be more tired and then the leg pain returned.  We tried increasing minerals when he had the pain and it would subside by morning.  It has continued though to be a frequent occurrence.  Dark circles are once again prominent.  We spoke with his doctor and will be seeing him on the 27th for a complete assessment.  Meanwhile we have cut out any honey and maple syrup from his diet as it seems that whenever he starts having these on a regular basis we cycle back through not feeling well.

It's frustrating to me as a mom to watch him be in pain and it's so hard to describe to others including his doctors how I know something is wrong.  For one he stops talking in his usual hundred words a minute fashion.  He also wants to be hugged and held so his sisters and I take turns with that.  I love snuggling him but I long for a time when it's not because he's in pain.  He also is really tired and will lay around most of the day only moving to get food and then finding somewhere else to plop.  This last round he went 9 days where he was really quiet and just not feeling well.  Today is day 3 of being back to semi normal.  Last night his head and legs hurt.  He sleeps on ice packs on his back, legs and head.  This sweet 10 year old was beyond excited when I ordered an ice pack large enough for his whole back.  He couldn't wait for it to freeze so he could try it out.  In my mind that is super sad and indicator of how we cannot gauge the constant pain he is in.

As it is, we are back to waiting to see what this next appointment brings.  Questioning whether something could have triggered it beyond the increase in honey and maple syrup.  Was it because we switched to Costco's organic ground beef from Earth Fare's Grass Fed one or that he started having organic milk on homemade granola, was it the full moon.......  Next month we travel to the Naturopath and will see if that sheds anymore light on what's going on.  Meanwhile, we take it one day at a time and pray continually for his full healing!  He has been able to continue participating with his hockey team and loves it.   We are thankful that he can be schooled at home so that he can play hockey and still get the rest he needs.

One of those days where it took to much energy to move

on the bio mat

At his brother's hockey game being silly with his sister

He used some Christmas $ to get his big Sis Toothless from Build a Bear