Obsessing about Lyme on the Internet again

Up too early obsessing on the internet and trying to find other families, like mine, who have made it out of this waking nightmare and went into remission for good, but I am not finding a lot of hopeful stories out there. See my kids were already born with Chronic Lyme's disease; They have been baking in parasites since conception and chances of remission are harder, treatment on their tiny bodies is really, really long and harsh. Not treating them, though, is a death sentance...at best they would/could live the rest of their natural lives in excruciating pain and horrific fatigue. As much as I want to be positive and trust that it will all be okay in the end, it is really hard to stay positive when all you see is unreachable mountain tops and you don't have any climbing gear.

 

I will be the first to admit that I don't know my ass from my elbow when it comes to all things Lyme and Co.  Since our diagnosis I have definitely learned a lot but it is still such a confusing and overwhelming time.  I do see some positive changes in my 3yr old since starting treatment so I KNOW in my heart we are at least now pointed in the right direction: If only we could get the baby stabilized on her protocol and doing well too.  I even see a tiny glimmer of change in my constant 24/7 headaches and multi-weekly migraines that I have had since the age of 9 or 10.  It seems like the migraines, that can lay me out for hours to days have been a bit less frequent - even when I am off my pain meds.  This is a good sign, right? 

 

Just now my 3yr old is complaining of bad leg pain behind her knee and thigh and it is hard not to freak out.  The worst part is that I barely can help myself and have NO idea how to help my children through this.  It is a horrible predicament.  I don't want to be just starting our treatment....I want us to already have a year under our belt and actually have some real hope with diminishing symptoms.  Starting out treatment just brings new and excacerbated symptoms so it is really hard to see the light at the end of the tunnel. 

 

There are times that I question our Lyme's diagnosis - even though I am absolutely positive that we have it, plus the co-infections Babesia and Bartonella.  I can say for certain that I have Bartonella because I periodically will be covered in cat looking scratches that bleed and swell and take weeks to fade and then I will get more.  Freaky, freaky things those Bart scratches.  I will try to post a picture of my back but it may not work since I am fairly computer illiterate.

 

Bartonella aka Cat Scratch Fever

Anyway, now I am losing my direction and need to get my kids outside (a daunting task as I am so fatigued and the pain is unreal) since it is so nice and we haven't been out of our living room for almost a week. 

 

Prayers for all of us to get well and reclaim our lives once again....and soon!