Today, as we sat outside the courtroom waiting to be called in front of the judge, I wondered how many children had passed through these doors before us ready to fight an apathetic school department while their bodies fought an unrelenting illness of its own. It was suggested that the process of truancy court “benefits everyone”; I could barely contain my disgust when I replied that I did not believe the process benefitted anyone at all.
I knew the school would judge with their eyes, rather than any facts presented, so I saved myself the frustration of trying to reason with the administrators to cancel the court appearance based on an illness they could not see- and therefore do not believe to exist.
At first, I was very angry about the attitude that has confronted us, but that has since been replaced with sadness and concern. We live in an area with such a high prevalence of tick borne illnesses, that I literally do not know of one household unaffected by Lyme or a co-infection. The town that gave the disease its name is less than an hour away, so how there can be any disbelief is beyond me.
Having said that, I can say that there is little in the way of information about the symptoms associated with tick borne illnesses beyond what I consider the “classic symptoms”: flu-like symptoms, joint pain, fever, muscle aches, bull’s-eye rash.
The other problem is, we call everything “Lyme”; we just qualify it as with or without the rash. I recently dug out my own medical records from when I had Lyme disease (without the rash), and I discovered that I actually had Erlichia (now called Anaplasmosis). I never knew that’s what I had. The doctors just made it sound like I had Lyme, and not everyone gets a rash. I’ve since looked up Erlichia, and it’s quite different from Lyme disease and does not cause a bull’s-eye rash at all.
My son has Bartonella, which garners many confused looks and an occasional step back from people we are talking to. He may have Lyme as well, but his Bartonella symptoms are very distinct, so I wanted to share what Bartonella looks like in my fifteen year-old son. Below, I am going to list his symptoms and his treatment with some links to resources I have found to be helpful.
Psychiatric Symptoms- new to him this past year:
Anxiety that progressively grew worse over the course of the last year. He always had anxiety, but it became a perpetual state of fight-or-flight for him.
Agoraphobia
Depression
Brain fog, confusion, difficulty concentrating above and beyond the ADD symptoms he takes medication for. It’s as if he isn’t taking any medication for ADD., and we had him tested for a possible learning disability, that’s how difficult school became for him.
Crying spells
Occasional fits of anger- never directed at anyone, but a rage that is almost spontaneous and brief
Irritability
Obsessive thoughts- not about anything specific, but again, thoughts that never stop- much like ADD, but worse for him than normal
Anxiety Disorder/Panic Disorder- not controlled by medication. He tried several situational meds like Xanax, Propanolol, then Prozac and Celexa- nothing helped, they just made him more tired or confused.
Isolation
Dissociation- during his worst anxiety, he felt disconnected from his body. He would try to tell himself to move, but couldn’t. He also couldn’t express any of that to anyone near him; almost like being trapped inside his brain.
Excessive fear
Physical symptoms– prior to this, he played on two sports teams each year and was very active:
Extreme fatigue
Malaise
Intermittent fevers without any symptoms
Swollen glands without pain
Vertigo- dizziness
Unable to participate in extended periods of exercise
Headaches
Stomach aches
Legs feel heavy
Stretch-mark rash on his back
Non-descript rash on the top of his chest
Blotchy rash on arms after heat exposure- such as the shower
It’s difficult to know exactly what he is experiencing, because he has never been the type of child who complains about how he feels. I honestly don’t think he can differentiate many of the symptoms as symptoms, but the list above describes changes we have seen in him, and some of his own descriptions, throughout the year. We have also learned that he is homozygous for the MTHFR gene C677T, so he does not metabolize folate.
He is now taking Rifampin, Japanese Knotweed in the form of Resveratrol, Acetyl-L-Carnitine, 6(S)-5-methyltetrahydrofolic acid, Multivitamin, and Fish oil, as well as Epsom salt baths.
The cheapest place I have found Resveratrol (the recommended version of Japanese Knotweed) and the Acetyl-L-Carnitine is vitacost.com
http://www.vitacost.com/productResults.aspx?ntk=products&ss=1&NttSR=1&Ntt=resveratrol%20250%20mg
I found the methyl folate formula at a local pharmacy. It is made by NuMedica and has the 5-MTHF right on the label, which is helpful when looking for the right version of folate for this genetic anomaly.
On the NuMedica site, you can put in your info to find a doctor or pharmacy that sells this brand. It was about the same price as ordering it online, but you can also get it from Dr. Lynch’s site at:
http://www.seekinghealth.com/best-supplements/l-methylfolate-calcium-supplements.html
Information about symptoms of Lyme, Bartonella and other tick borne illnesses in children:
http://www.mybrainhealth.org/files/Lyme_check_list_06_01_12.pdf
http://www.lyme-symptoms.com/CoInfectionsBartonellas.html#Chronic
Hopefully, this will prove helpful to someone whose child is struggling with symptoms that don’t seem to ‘fit’ what the doctors are saying. We were lucky to be referred to a LLMD who knew immediately what the rash was on my son’s back and how his symptoms fit together.
Lyme, Babeisia, and Bartonella Blues 