Update

Tristan is amazing us more and more each day!  We feel blessed.  Lately he has decided to start playing with toys and reading books - two things he had no interest in before.  He has really started interacting more and more with his young brother Jake.  This picture from Halloween is the first time we were not only able to get him to stand next to Jake, but to look at the camera.  He did this on command.  This simple task is such a big deal in our world.   He continues to be very loving towards others.  Just wanted to show some updated pictures of him and how he is growing so fast!  Tristan is currently not on antibiotics but remains on probiotics, Vitamin D and other herbal supplements.  His continued progress amazes those who know him best. 

 

 Another big development in our lives is that Tristan has been accepted to receive an autism trained service dog from Retrieving Freedom Inc.  We found out that he should receive a service dog within the next six months!!!  We are so excited for him.  If you want more information on how these dogs will help Tristan, we have set up a blog site "A Dog For Tristan" at http://adogfortristan.blogspot.com/ .

 

This is a picture of Tristan with service dog, "Tu", at a fundraiser set up by my inlaws, Mark and Denise Kuhn, this summer.  It is amazing how these dogs have such a calming affect on him.

 

 

 

 

 

 

Tristan and I are doing much better these days.  Although in the past I have taken breaks from treatment, I am currently on continued antibiotic treatment along with herbal and other natural supplements.  I continue to exercise and eat a healthy diet daily (organic as much as possible).  Physically I am feeling 95% better than when I starting treatment almost 3 years ago.   We are taking things one day at a time.   We feel so blessed to have found the Lyme Disease when we did.  It has changed our lives and our son's for the better!

 

 

 

Mason's Lyme-Autism Paper Published in Medical Hypotheses Medical Journal!!!

Mason's paper is now in official print in Medical Hypotheses Peer Reviewed Medical Journal!!!!  I am so proud of him.  "Long Term Antibiotic Therapy may be an effective treatment for children co-morbid with Lyme Disease and Autism Spectrum Disorder.  Here is the link to the full paper to read:

http://www.drkurtkuhn.com/drkurtkuhn.com/Lyme_&_Autism_files/A%20Correlation%20Between%20Autism%20Spectrum%20Disorders%20and%20Lyme%20Disease.pdf

http://www.sciencedirect.com/science/article/pii/S0306987712000485

This is the first study, to our knowledge, ever done on children diagnosed with both Lyme Disease and Autism Spectrum Disorder that shows their differences in physical/mental symptoms before and after antibiotic treatment and the results are so shocking and interesting!

Antibiotic Treatment

I have been on antibiotic treatment now for over 2 years.  The first six months I was on antibiotics, starting in the Spring 2010, I showed no improvement in my symptoms.  I didn't seem to feel worse or better so the decision was made to start a PICC line in my arm.  I didn't realize it at the time that I was going to have it for over a year.  Although it was a slow process, I gradually started feeling better and better with the IV antibiotic treatment....It only took a year and a half to say that with confidence!!! 

Early on in treatment (about the time I got the PICC line) my husband and I thought we would make a box and put in every pill box, every IV syringe I had to use and see how much medication it would take before I started feeling better.  The box turned into a plastic crate and spilled into another crate.  I wanted to just visually see how much medication was needed to get me JUST on the road to recovery.   The picture below shows just how much it has taken (although I was originally told just two week of antibiotics would do it!)  It is mind blowing!

Our Sweet Boy

My wonderful husband Mason is a fourth grade teacher in Shell Rock, Iowa.  Around the time Tristan was one he had finished a masters in Science.  By the time we found out about Tristan's Autism diagnosis, and as a way for him to learn more about Autism and help Tristan, he decided to go back to school to start working on his second masters in Special Education with an emphasis in Autism.  About two months into his studies is when we found out Tristan also had Lyme Disease.  This really had a major impact on Mason and of course myself.  Although I was struggling with the thought that he might have contracted this from me (since scientists have now found Lyme Disease in placentas and fetuses with moms infected) it was shocking when we soon learned that there were many children in America, just like our son, that were suffering from the same two diagnoses.  That became very interesting to us.  Soon the word got out about Tristan.  Two other families (in our area) decided to get their sons tested for Lyme Disease as well (both with a medical diagnosis on the Autism Spectum).  Shockingly both of these kids where also positively infected with Lyme Disease!!!  This really amazed us that two random families in our area alone also (like our son) had Autism and Lyme...what are the chances?  How many other children out there are also suffering and the parents have no idea?  This started our long fight for awareness and recognition in the hopes that others will be tested and treated to live fuller healthier lives.  Here is a wonderful video my husband Mason put together on our son's progress with his treatment.  Get some tissues as it is a tear jerker and makes me cry every time.
Tristan has been on antibiotics since March 2010.  We did have him retested for Lyme Disease after being on antibiotics for a year and he was still positive but he had half the number of strands he initially tested positive for.  So he has been cured of three strands so far and our hope is within the next year or so he will be cured of this terrible disease.  The changes we have seen in him since starting him on antibiotics have been incredible.....Does he still have Autism....yes.  Is he a much happier and HEALTHY child....absolutely.  That's all we want for him.

Here is Mason's video of Tristan's progress

Since this video was made there have been many new developments in our lives.  Mason went on to finish his degree and did a first ever study on 5 different children that were all diagnosed with Autism and Lyme Disease.  He did a study on their progress (related to physical and mental changes) before and after treatment and the results are unbelievable.   So unbelievable are their physical/mental changes from the antibiotic therapy that it makes you wonder...was this the culprit all along?   The name of his thesis is “The Correlation between Lyme Disease and Autism Spectrum Disorders”.

Click below for a PDF copy of his paper

http://www.drkurtkuhn.com/drkurtkuhn.com/Lyme_&_Autism_files/A%20Correlation%20Between%20Autism%20Spectrum%20Disorders%20and%20Lyme%20Disease.pdf

After consulting with many different medical professionals around the country Dr Robert Bransfeld (president of ILADS) and Dr Stein Harris were eager to co-author this study and just recently it was accepted to appear in the peer reviewed medical journal “Medical Hypothosis”.   It is titled “Long Term Antibiotic therapy may be a effective treatment for children co-morbid with Lyme Disease and Autism Spectrum Disorders”.  (we will also have a link to it as soon as it comes in print!!!!!)  I am so proud of him as this topic will bring so much deserved attention and awareness to this unrecognized growing epidemic.

 

Starting our Journey

 In January 2010, when I got the diagnosis that I had Lyme Disease,  Jake was 5 months old & Tristan was 2 1/2 yrs old.  This was about 6 months after Tristan's diagnosis of Autism.  We decided I should start seeing a Lyme Literate doctor.  Before going to see that doctor we got both my boys and husband, Mason, tested for Lyme Disease.  We got the results that all three were negative and felt such relief.  Meanwhile I finally got in to see this doctor.  We discussed all my very strange symptoms that had been going on for many years and when I got in the car wreck it brought the disease out of dormancy in my body.  The doctor said that if I did indeed have this illness before becoming pregnant that there was over an 80% chance both boys had it as well.  Also the standard testing is much more inaccurate than we were aware of. (I will go into that later)  We decided to get them retested through IGenex Lab out of California that not only tells you how many different strands of the disease you have, but exactly how strongly positive you are for them, since Lyme Disease is a very slow growing disease.  After three agonizing weeks we found out that Tristan was positive for six strands of the disease (considered a very positive test) and Jake was only positive for two (but very minimally infected).  We made the tough decision at that point to start both of the boys on antibiotic/probiotic therapy.  One fact I'd like to state is that Jake was only 5 months old and never in his life had gone into the woods and was barely ever outdoors at that point.

                                     

That was in March 2010.  We feel so blessed with Jake as he ended up only being on antibiotics for three months and was retested and was considered negative.  I wish the same could be said about Tristan, but his story is a very different, yet interesting one....

  Beginning in March 2010, I started my long journey of antibiotic therapy along with other therapies along the way.  I do not know when I was infected with Lyme Disease.  I don't recall ever being bitten by a tick.  But along with Lyme, I was also infected with three different co-infections that added many detrimental symptoms, issues, and complications to my recovery.

I was on oral antibiotics for 6 months and still showed no progress in my physical recovery from the disease.  There is no way to measure your recovery.  You can only base it on your physical/mental condition improving.  At that point the decision was made to start me on more intensive therapy.  I had a permanent PICC line placed in my arm.  The day I had it placed, I had my first and worst HERX reaction that lasted for a few days.  (A HERX reaction is a feeling of all your physical symptoms getting much worse. This is a sign the antibiotics are killing off the disease and the therapy is working)  I ended up having the PICC line in for over one year.  It was a few months before I had it removed that I FINALLY started to feel better, physically.  My energy was much higher, the intense pains in my back were better, my neck pains where drastically better and my bouts of arthritic issues with my hands and feet were still there but lightening up...I finally felt, for the first time, I was on the road to recovery!!!!  That was after a total of TWO YEARS on antibiotics!!!!

The Beginning

                                 

Our story all began with the birth of our wonderful son Tristan.  He was a typical, developing, sweet toddler.  Very active and outgoing.  At around 18 months of age Tristan went from speaking 10-15 words to nothing.  At that time we were not aware that was something to be concerned about.  He would rock at night, hitting his head over and over again on his crib, displaying no signs of discomfort or pain.  doctors assured us it was a normal way for children to sooth themselves.  At the age of two we took him to his 2 year wellness exam and when we voiced concern about the speech, the doctor simply said to just bring him back in 3 months to check his hearing.  The doctor stated that if it's not a hearing issue that sometimes it can be a "sign of Autism".  Stunned, my husband and I, looked at each other in disbelief.   It had never entered our minds as a possible concern.  We left the office confused and upset, since we were not given any information on the topic.  When we got home we were determined to take our son's care into our own hands.  We looked up Autism symptoms (as neither one of us had much idea about autism at that time).  We were stunned because at that time Tristan started showing some signs like random tip toe walking, hand flapping, eye contact only initiated by us, etc.

We immediately had him evaluated by the AEA organization here, got him help in the home right away and about a month later after our second son was born, we had him evaluated by the Medical community and he was officially given the medical diagnosis of Autism-PDD-NOS (a diagnosis under the Autism Spectrum but considered a more mild form of Autism).  This was in August of 2009.  At that time we pushed for him to get extensive help out of our home by the local AEA organization. 

To back up a bit, when I was 18 weeks pregnant with Tristan I was in a bad car wreck.  I broke my left shoulder blade and was knocked out.  Before the wreck I felt wonderful physically.  However, for years before, I had arthritic issues with both my knees and had surgical intervention (at the age of 25).  I led a very healthy lifestyle and was very physically active.  I was by no means a athlete so the knee issues were out of no where and confusing to me and my doctors at that time.  Also, over the course of my college years, was becoming increasingly sick (from colds, flu, tonsillitis etc) at least every other month.  It was puzzling to me since I did stay in such great shape. 

So after the car wreck, when I was pregnant, I physically started to go downhill over the course of the next two years.  Initially, I had issues with the left shoulder blade (back area) then started having pain on the right side of my back as well.  Then "stiff neck" issues began.  I attributed these issure to my car wreck. Initially the left side (where I broke my shoulder blade hurt).  Over time the right side of my shoulder started hurting as well, which didn't make much since.  When Tristan was 18 months old I had exhausted treatments from the chiropractor, massage therapy, and physical therapist (all of which where unsure how to "fix" my pain issues).  I saw Neurologists, Orthopedic doctors,  and was going back to my general practitioner for lab work over and over cause I knew there was something wrong with me.  I was maxed out on Advil for pain.  At the same time I started not only having arthritic issues in my knees but bouts of arthritic feet, hands, and joint issues. 
At that time the pains in my body would come and go.  Some weeks my feet would really ache and then go away and the next it would be my hands.  Very strange.

                                 

I then became pregnant with my son Jake.  At that time I was in a lot of pain from my back and neck but just thought it was from the wreck and I would get through the pregnancy and then possibly see a pain doctor for "chronic pain".  Even my Chiropractor thought that I should see a pain doctor....what chiropractor suggests that?  I felt helpless that the pain would never go away.  When I was about 6 months pregnant, out of no where, one day I was unable to walk on my feet.  I ended up going to two different podiatrists, both of which were really unsure what was wrong and how to treat the problem.  I ended up wearing a orthopedic boot for the next 3 months to get me through the pregnancy.  After I had Jake, the pain in my feet went away, only to come back a few months later.  When Jake was about 3 months old he was sleeping through the night.  I was back to a normal sleep schedule.  That was about the time (in addition to all the other pain I had) that the severe exhaustion started.  It was mild at first and then got to the point where everyday around 11am I was forced to lay on the couch.  I felt an overwhelming exhaustion like I had never experienced before...like I just finished a marathon exhaustion.  Since I am a nurse, and a very active person, who never lays down in the middle of the day, I realized I needed more medical help.  At that time I went back to the doctor...again.

I presented my doctor the same list of symptoms we had discussed the year before.  When he heard me say the word "stiff neck" (which I guess he didn't pick up on the year before) he seemed to take note and requested a Lyme Disease test to be drawn as well.  It took me a minute to remember what Lyme Disease was from nursing school but then I remembered.  At the time I thought to myself "I'm from Texas and I've never been bitten by a tick."  Ticks aren't in Texas....right?!?  Just a few days later I got the call from the doctor's office that indeed this is what had been going on with me all along.  At that point I thought to my self "What About My Boys!?!"