July 3, 2007


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February 2, 2010











The last two months have been very hectic.  I've begun journal entries several times, but have not been able to finish and post one in two months.  I apologize.

Cameron has been sick, sick, sick.  He had 16 well days in one three month period.  In the past six months, he has only been well for 6 weeks (and not concurrently).  This chronic state of illness has meant that Cameron has been unable to participate in most treatment.  He has missed countless therapy and school days.  We also had to suspend many biomedical protocols including chelation and HBOT.  It appears that Cam's immune system has shifted into overdrive and all of our focus has been on addressing his immune system issues.

As a family we have also been investigating the role that Lyme has played in Cameron's ASD as well as the health status for the rest of us.  We all appear to have been infected with Borrelia Burgdorferi Bacteria (Bb), the bacteria that causes Lyme Disease.  Both my husband and I have tested positive for Bb.  We are unsure if we contracted it separately or if one of us passed it to the other.  The children presumably received their infections from myself (in utero as well as through breastmilk) as they have had symptoms of Bb since birth.

After discussing my own medical history with our LLMD (Lyme Literate Medical Doctor), we believe that I likely became infected with Bb when I was about 12 years old and residing in Wisconsin as this is when I first began having symptoms of Bb.  I vividly recall lying on our family room floor crying from the joint pain I endured for years (which was always dismissed as growing pains).  I also developed many other symptoms which were also excused by other disorders.  Then a few years later I was prescribed long term antibiotic therapy for acne by my family physician and my symptoms of Bb began to disappear.  The antibiotic was one often prescribed for Lyme Disease.

These Bb symptoms reappeared at a time of significant stress (completing college, working, planning a wedding, enduring multiple knee surgeries) as well as the additional system insult of being prescribed oral contraceptives.  Almost overnight my world overturned.  I (and my doctors) attributed it solely to stress and the hormones in the birth control pills until recently when I learned that these are things that often trigger relapse to Lyme Disease.

While it's a possibility that I was reinfected with Bb either by another bite or by my husband; it is also very likely that this was a relapse of the original infection.  The Bb had perhaps gone into a cystic form after antibiotic therapy.  Then when my body appeared to be weakened by stress, surgeries and other hormonal insults it was able to come back out to attack.  Over the next decade I became increasingly sick and was diagnosed with several autoimmune issues when other causes could not yet be determined.  It is also likely that the Lyme led to the extreme and previously unexplainable difficulties I had in my pregnancies.  Also, the stress that accompanies having a child with ASD has allowed the Bb to thrive and I have become even more and more symptomatic over time.

After our appointment with our LLMD I decided to begin antibiotic therapy immediately.  We began our daughter on antibiotic therapy shortly after myself.  Both of us had a Herxheimer reaction after 3 days of treatment followed by a great improvement in Bb symptoms.  

We were not planning on making a decision about antibiotic therapy for Cameron until after the LIA Conference and consulting Cam's DAN doctor.  However, Cameron became very sick the last week of May.  He began spiking 103 degree fevers each day and then began having thick green sinus drainage.  I spoke to Cam's professional Homeopath who said she would ship us some treatments for Cam.  Four days later I still did not have the package and Cam's fever had been going on for 7 days.  It was now a Saturday night we were running out of options (I'd tried every other natural remedy I could find locally).  We decided to fill the antibiotic prescription we had from the LLMD.  Within 24 hours of beginning the antibiotic Cameron was on the road to health again.  By the third day he was all the way back to where we left off in ASD treatment 4 months earlier and are now moving full steam ahead again.

Meanwhile the rest of us became terribly sick and were all diagnosed with Strep infections.  This infection has taken a toll on Meg and I.  We have taken a couple steps back in our Bb recovery (though not all the way back) as our immune systems have taken quite a hit this month.

This is now the third time that Cameron has developed strep.  Until now, he has developed no antibodies to strep (his immune system has never acknowledge the infections).  The development of a fever was a good sign that his body was at least noticing an infection this time, but it also seems to have been so weakened that it was unable to process the disease.

While we decided to begin Cam on antibiotics and then watch him turn around so rapidly I pondered all of this and had an epiphany.  I have heard stories from other families about their children losing many of their ASD symptoms while they were sick or hospitalized.  Many times this sudden taste of recovery was associated later with the child's lack of appetite or inability to eat and thus detox from gluten and casein.  We had never experience this with Cameron.  Even when he was sick and not eating he always continued to regress further into ASD.  However, when Cameron was sick these illness usually resulted in secondary infections of bronchitis or pneumonia and family doctor did not often prescribe antibiotics but had prescribed steroids to Cameron numerous times.  Also, the few times he was given antibiotics they were also accompanied closely by steroids.  Perhaps the children who briefly lose ASD symptoms while on antibiotics are actually killing Bb and thus temporarily losing symptoms (only to have them return when the brief antibiotic therapy stops).  Perhaps the steroids were our detriment.

Every speaker I've heard and everything I have read about Bb infections stresses the importance of NOT using steroid treatments with a person infected with Bb as they further suppress the immune system and allow the Bb ravage the body uninhibitedly.  Cameron had endured a cycle of first being born with Bb (inherently immune compromising), then injected with numerous toxins, viruses (live and dead), metals and steroids in his first years of life.  The Bb made a perfect host environment for these viruses and metals to thrive in his body and these toxic elements, co-infections and steroids had created an equally beautiful environment for the Bb to ravage him.  Before the age of 4, all of the things we were doing for him to ensure his health (vaccines, steroid treatments, etc) were counter indicated for an individual with Bb and thus continually insulting his immune system, brain and body.  When I think back on this vicious cycle I am in awe that he didn't simply die from it all.  That he continued to fight through it with us and is today often mistaken for a healthy NT child.

We did attend the LIA Conference this month.  It was wonderful getting information about Lyme, Autism and the relationship and challenges for individuals affected with both.  We left with increased knowledge as parents, caregivers and infected persons ourselves.  We also left feeling confident that we made the right decision for our son in having begun antibiotic treatment for him two weeks prior to the conference.   I am happy to have discovered more of the missing pieces.  I know it's still going to be a long journey (average treatment time for chronic Bb is two years).  But I look forward to the day that we are ALL HEALTHY.




Disclaimer:  The material on this site is for informational purposes only and is not to be meant as medical advice.  Please consult a trusted and knowledgeable physician when making medical and treatment decisions.

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