Accidentally

Little man Christopher is having accidents again.  Tonight his ears were red and hurting him.  He said they were cut. But they weren't. Maybe it was a herx reaction. But then again...maybe not.

It seems things happen in an ebb and flow. Things seem to be easing a bit but he's still definitely twitching...

But the stomach pain is not something he complains about any more. He does still complain about his joints though just not all the time.

I love my little man

A man dies, his legacy lives on. Day 8

There's a dr.  His name is Dr. Burgdorferi.  He found the lyme spirochetes which was later named in honor of him.  Today he passed away. Without his knowledge and research I don't know where Christopher would be.  Images of him not walking, or gripping his stomach and groaning, or doing a head bob all come to mind.   All of these things I just listed are lyme related.  Without dr b we would know so little about this awful paralyzing disease.  I'm thankful for his unending research and for his willingness to share his knowledge and expertise.

Thank you dr b.  For how you've helped my son.  Thank you.

Day 7

I'm having to get refills on Christopher's prescriptions and had to call the Drs to find out how log he'd be on them (larger quanitties are much cheaper from a compounding pharmacy).  The reply was 3-6 more months.  And the addition, possibly of another script.  Though erik and I are both nervous about this script.  It's heavy duty with side affects like depression and anxiety.  I can't imagine all that in a vibrant 4 yr old.  In some ways I see him coming out of this, seeming better, but in other ways, it's worse.  It comes in waves.  I just wish it would go now.  Kind of like Marvin k mooney.  Will you please go Lyme disease and bartonella (harder to treat than lyme) and leave my child alone.  Unscathed any more.  He's already developed a sense of trepadation and trauma from all the Drs he's seen.  And while I know it's good and helpful but I feel like an awful parent having to subject my innocent, unknowing child to 8 vial blood draws, medicines he cant stand to take, one med that turns his pee and tears orange.  Can I have my son back now?  Enough.

day 6

Last night Christopher went to bed with a rash on his chest.  It looked prickly and he was itchy.  Now the questions begin.  Is he herxing...  or is he having another allergic reaction?  What is a herx you asked - A Jarisch-Herxheimer Reaction (often called a Herx for short) is the reaction that your body gets when there is a spike in die offs from the Lyme disease and associated co-infection bacteria.


So is he having die off?  If he is than it's ok to have the rash.  But if he's having an allergic reaction it's bad.  And us, his parents and his dr have to figure out what it is.  This makes treating lyme, and bartonella so very difficult.  The unknown.  The questions.  It's almost like playing Russian roulette.  An allergic reaction could be fatal.  but a herx....  that's ok, though it doesn't go without risk either. 


My word, I just want a break.  why.  my son will never be the same again.  ever.  why didn't they treat him :-(

Happy 4th birthday little man

today was your birthday.  4 years ago I had a vbaccc. And you made a grand entrance.  You've stolen the show since you were born.  You have brought such joy to our lives.  You've brought out character qualities in others that are good.  You are a blessing. Yet today, today, my fear is losing you.  To this nastiness.  This disease your fighting for.  Tonight as you took a medicine, you said to me, is this so I won't have Lyme disease any more.  If only.  If only.  If only for 1 day he could go med free.  He could eat whatever he wanted.  If only I didn't have to watch the clock constantly to make sure he got his meds in the right spacing.  If only the twitch that he has would stop, because even after weeks of it now, it's enough to throw me, momentarily in to a heep of tears on the floor, to make me want to cry like there's no tomorrow.  And yet, the tears, they don't help.  They don't take the hurt or the worry away.  They don't take the damage away.  The disease has affected our whole family.  In some ways we are weaker, and others stronger.

My little Christopher, my wish is that I could somehow take the pain, the meds, all of it, away from you.  I'd carry it myself if I could.  I love you.

Happy birthday my lil man.

Day 4

its the last day hes 3.  My little man.  He is such a sweet boy.  And he has been through so much.  More than his brothers or sisters combined,  he's so full of life, so vibrant, yet shadowed by this ugly thing inside his body.  Tomorrow is go green day.  I'm asking everyone to wear green, take selfies and post it to his wall.  It will lift his spirits and mine.  It will help us to remember, he's not alone.  I love my little boy.  Our world would be so different without him.  Thank you Jesus for my little light.

Happy birthday eve lil man.

Day 3

We are doing some digging into the possibility that our son may be on the autism spectrum now (Lyme induced autism) and today he had his speech evaluation. I'm happy to say that he did exceptionally well. We are waiting for the ot eval to come to any type of conclusion.  His tics still continue, unexplained at this point.

The rage still is daily. I just want my boy back.  That's all.

Day 2

I never knew I could have this much hate toward something. Something so tiny it can't be seen without special scientific lab equipment. Yet it's evidence on my son is seen daily. You never know what you'll see each day. Today it was more tics and day 2 of a headache and backache.  I hate Lyme disease. Hate it.

day 1

This is a blog all about my son.  My little boy, who's about to turn 4.  Here is his story.

He had a bulls eyes rash last June. He had had a few ticks on him last year. I took him to two pediatricians last year one said Lyme isn't down here. The other dr, when I brought my son back two weeks after the rash for loss of appetite and not feeling well, he said bulls eye rashes don't disappear on their own. I took him to my gp last July that I was seeing at that time and had done enough digging to know he needed blood work, so I asked for a western blot. Only the dr never sent me the labs. This spring, I realized, after a long chain of events, that I needed to get those labs. I contacted the lab and went and picked them up from their office a day after I called them. On the lab, from last year, he showed negative for the compulsory test (you need 3 out of 5 bands for one standard and 1 out of 3 for the other) but his 41 kda was completely, off the charts positive. I also realized that Lyme doesn't completely show up right away in blood tests. Meaning, you need to have it for a long time before it shows up all the way. The 41 kda can however show up right away. So when I saw his 41 kda was off the charts positive, I knew he needed more testing. We found a Lyme dr here and had a phone consult. He agreed to get the full panel of testing done for him. When we had our appt to go over the results, that dr wouldn't name Lyme, and simply said my sons fighting "it" and that he didn't need treatment. I knew enough to know someone just doesn't fight Lyme, and that his labs were very positive for Lyme. It is the equivalent of saying your son has cancer but we won’t treat it. I spoke with the head dr at the lab that did my sons labs and he disagreed with that dr and said he needed to be under medical care receiving treatment. So I was off to find another dr. I found a pediatric Lyme literate dr in Rockville md. He had an appointment with her on July 31 2014. So on July 31, 2014 my son was officially diagnosed with Lyme and assumed co infections. It's been confirmed he has bartonella as well, though the first labs done by the local Lyme dr shows negative for Bart. A second set of labs done with this dr in rockville confirm through visual picture that he indeed has bartonella. The dr and us believe he has babesia as well. Symptomatically, this is what things looked like... Going from last fall to current... Last fall, though this may be unrelated, but I suspect it's not, he played soccer, for a short season... The fields have large power lines on them. On several occasions, my husband and I felt electricity run through him. It's probably related to his mthfr but is compounded by Lyme. Last November/December he was part of a parents day out. He was so sick that whole time from their thanksgiving program to January he never once got to go to the pdo. It wasn't that he had a serious illness (that we knew of) but that he just wouldn't get well. We homeschool and the coop we were in stopped meeting mid November, so the only outside exposure to germs came from church and grocery shopping, things like that, there wasn't like a trip to a gym on a frequent occurrence, nothing..so I couldn't figure out how he was getting sick. In February my parents took us all to Disney. Two days after we got home he couldn't walk. He woke up on a Saturday morning crying in his bed. He said his legs hurt. That lasted for three days. We debated taking him to the dr/hospital but there was no bruising anywhere and there were no signs of injuries anywhere so it seemed pointless. He started coughing, frequently. Not a productive cough, more of a dry cough. It wouldn't be a coughing fit, but just a cough, a lot. He started complaining about his stomach hurting, right behind his belly button. It became constant. And painful. He would ask me, why does my belly keep hurting, why won't it stop. And he would almost writhe from the constant pain. It made it hard for him to settle down. He had night sweats. It didn't matter if he was wearing full clothing in bed, or no clothing. He would always have beads of sweat on his nose at night. He would complain again of his legs hurting, different spots, but not to the point he wouldn't walk. He started out eating us all. Literally. There are 7 of us in my family and that's no small task. He would eat to no end and be hungry 20 minutes later. He started having accidents. He'd been potty trained for a year or so, so accidents were not normal for him. He pooped in his swimsuit at a pool, then he has had 4 accidents here at home. They all have been where he's been just walking etc. one time he was in the kitchen waiting for lunch. Another time he was walking around a table in our dining room. Those are examples, so playing ie being distracted or not wanting to get up aren't the cause. He actually said on two occasions he couldn't feel it,,,,he couldn't feel the need. More recently he’s become extremely sensitive to sound. To the point, in church one Sunday, he ran out of the worship area because the sounds hurts his ears so loud. We can no longer sit where we used to near the front, but have to sit as far back as possible. So that's a rough, from my memory, list of all his symptoms... I haven't talked about his anger/angst/anxiety and while I think Lyme is definitely coming out in his behavior, it's harder to isolate in a 2/3 yr old. I say 2 because that's how old he was when he had the rash. He's now 3, but will turn 4 in November. If you want to help - here are the ways to do that - first, share this page; second, he has a gofundme page - http://www.gofundme.com/ejngcs you can donate through his page if you would like to help financially and third, prayer.