Ladies and Gentlemen,
I'm back.
Unfortunately, my life has gone from substantially complicated to 'out-of-control... please hand me a bottle of seroquel and a shot of vodka quick' (note to MD's I know these two should never be taken together).
For all my Lyme readers:
I'm currently taking 6,000mg/a day of amoxicillin, 200mg/a day of minocycline, 200mg/a day of doxy and 250-100mg/a day of malarone. In addition, of course, I'm taking many supplements, probiotics out my ass (literally) and some Chinese medicine that helps with the now permanent arthritis in my hands and wrists.
I'm going to continue this regimen until summer and then take a self-induced med break for a month and finally go on IV meds for Lyme. Picc or port is now the question, as my neuro/psych symptoms are getting worse not better. I can no longer drive farther than town (5 miles/10 minutes), as when my body gets tired (and I mean complete shutdown) I get double-vision that I no longer self correct (by concentrating real hard).
My short term memory and word recall is at an all time low. I no longer can brag about my photographic memory and recite arguments I had with my husband line by line from 6 months ago...let alone yesterday. My 16 year old takes complete advantage of this symptom, and often tells me she already told me such-and-such the other day and I just don't remember. I'm sure sometimes it works but now a lot of the time I just say no to everything to make it simpler. You would think by now she'd take notes of our conversations, but what can I say... she's a teenager.
There's plenty more depressing shit to talk about... but enough about me.
My youngest(almost 12 yr old) has tested positive for Lyme. And not just a little, a lot(5 positive bands, 2 inconclusive). We didn't catch on to her symptoms as quickly as I would have thought/hoped...as all of her symptoms present as neuro/psych...severe anxiety, OCD, panic attacks, etc... It just didn't dawn on me because I was looking for more physical symptoms, fatigue, muscle pain, joint pain, etc...
And the kicker is I probably(99.9%) gave it to her, which now confirms my guess that I had it when I was pregnant with her. My poor baby. I'm confident that the little f*#ing bugs have been laying dormant since her birth and that as soon as she started pre-puberty, the hormones just kicked everything into high gear.
So she's started seeing a really great Lyme psychiatrist here in Seattle and in a week we'll be flying down to the Bay Area to see her new pediatric Lyme doctor. At least I still have family and friends there...we'll stay at my mother's and my sister will come visit with my little monkey and we can try to make the visits more about friends and family and less about doctors and medication.
Never in a million years would I have thought at 42 this would be where I'd be. Where my family would be and that Lyme disease would be such a big portion of my life, my family's life, etc... Who knew? Why my family?
Our support group is growing, so this 'bug' is no fluke. And our members have contracted lyme from all over, Washington, California, Nevada, Colorado, Malaysia, Singapore, New York, Missouri, Connecticut, etc.. it's now in every state and almost all countries in Europe acknowledge Lyme as the leading vector-borne disease.
Our support group managed to get our little theatre on the Island to show the documentary, Under Our Skin. It was a real success, with a Q and A after with two doctors and the noted authoress, Rebecca Wells(lyme sufferer). We were virtually sold out and hopefully we got the word out, even just a little bit.
So to all my readers, I'm back to report in, but my life has taken a turn for the crazy. I'd like to continue to document my daughter's and my progress with Lyme disease, but I may be doing it over on our community Lyme blog, as I never meant this blog to be solely about Lyme disease.
But don't fear my dear friends, if I'm going to be staying at my mother's a least once a month, I'll have plenty of funny, scary, and mostly clinically hilarious bi-polar stories to tell you about my dear old mother. Maybe I'll misplace her lithium and we'll have lots to discuss.
Sincerely,
Monkey Girl
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7 comments:
Hey, Girlfriend, your presence has been missed! I am so sorry to hear all that you and your wonderful family are going through, and wish I could do something to help. I'll keep yu and yours in my thoughts and prayers, and send good karma your way and whatever else might work. Have missed your strong voice on issues and you hilarious family commentary, too. If you ever feel like doing a guest post at MP, let me know - you're always welcome there. Hang in there, and keep fighting the good fight & hugging your lil' monkeys.
Much love,
Perry
So sorry to hear about your family's health issues getting worse! "Why my family?" I hear ya! It sounds like good news that you already know the great docs to bring your little one to. I always said it must be harder to watch someone you love go through something like this than to go through it yourself. I'm sure you know better than me.
Missed you while you were away, and did check in now and then to see if you were back. Hang in there!
I think my brother takes the medication that you mentioned at the beginning of this blog post, but its because he's schitzo...instead of god talking to him kid rock talks to him.
Anyways, I had no ideal or idea that lyme disease could produce symptoms like panic attacks and other neuro symptoms...That makes me wonder if I have lyme disease!!!
Anyways, it really doesn't sound like 2010 will be your year but maybe 2011 or 2012(I'm really trying to sound positive here but doesn't really want to come out that way.) Anyways, you've got all your big and little monkeys to take care of you and love you so keep your head up.
Great Works! - Friends Connect -
http://support-ime2.blogspot.com/
You sound as bad as I do with all the supplements!! Kind of sucks. I take a handful of pills in the morning, plus who knows how many through out the day.
Good luck to you.
I am now following your blog.
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