We have a new Lyme doctor, same state as our other one. There isn't many people in MN, or that treat peds.
My comfort level with treating my kids by long term abx is a pretty big zero. I have had so much judgement from friends and family members over this that it has literally ripped about 1/2 of my relationships to smitherines. Had my kids and I been diagnosed with Cancer instead, and I was going to choose an alternate therapy you can believe I would still have all the unwavering support that should be granted to us now. I hate the Cancer comparison to be honest but having Lyme feels like a death sentance a lot of the time. A race against the biological breakdown of your cells and organs.
Anyway, before treatment, A, was a pretty healthy baby. She was not a good sleeper, had reflux like my 4yr old, was dairy intollerance/allergy and would spike really high fevers 102-103 for 5-7 days at a time, no other symptoms. We brought her to the ER twice for the fevers; the second time she had developed a petichial rash that was spreading before our eyes. All of her blood work, of course, was fine. She complained of migrating pains and headaches. Light bothered her in her eyes and she had a lot of anxiety/fears about things, nightmares, constipation. She was a week past due, great Apgar score, nursed fine, met all her infant milestones (could climb before she could walk), and walked at a year. She started potty training at 18mos and other than pooping in the pot, she does all her bathroom stuff herself with minimal help. She is finally starting to talk more. It is hard to compare because my 4yr old, J, was speaking in multiple sentences by 18months.
Once she hit a year was when I noticed her complaining of pains and headaches. We all got diagnosed with Lyme, Bart & Babs in Aug of 2012 but we could not get her stabilized on her abx until this December. Since she couldn't tolerate the Ceftin our LLNP switched her to Amocicillin - which our new LLMD feels is a pretty useless abx.
Our new LLMD things that bart is huge in the Midwest and needs to be dealt with 1st or people will never get over that initial roadblock. He is more old school in his Lyme protocol. A lot of people like him and trust him with treating their kids....at this point we have no alternative and so I am really hoping he will help us more than our other one did.
A is now on Rifamprin & Clarithromycin - plus some supplements. I want to start more green juicing. The more research I do on Lyme the more I think that repairing the mitochondria is what is going to eventually get us on top of the Lyme. I think the abx will help beat it back but they are also starving the mitochondria too and so you have to work double hard on getting the body systems repaired. But...here is a little snag. I can barely stand up most days and it feels like someone is asking me to step out in the cold and run 5 miles, that is about how monumental all this feels.
A's symptoms seem better since starting tx. She is definitely more fatigued and crabby, lately, and the dark circles under her eyes make her look like absolute death. A couple of times I took them off abx for a couple days to let their systems just have a break.
Everyone out there seems to be taking charge of their Lyme and their kid's Lyme and just forging ahead and kicking ass. I just can't seem to pull myself there when I am feeling so sick. I am trying to push myself to keep moving. I know I am taxing my system but if I don't stay strong I am going to just stop being able to keep going on. Would love to hear how others do it...really would.
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