Lyme activism - Please sign the petition!!!

Please sign the petition if you haven't already!  This link from LymeDisease.org sums up the problems thousands of us are facing to receive treatment, care and insurance coverage.  This is the fastest growing infectious disease in the country and you or someone you know likely has it.  Until we change these guidelines, people will go undiagnosed and untreated. Please sign the petition ~ just click here!  You will have my never-ending thanks.  

Chewable papaya & delicious customer service!

If you know me or follow my blog, you know I am a fan of Chewable Original Papaya Enzymes.  In my post of September 24, I was writing a testimonial-esque entry about them, so I went to their website to copy the link and snag stock art for my blog. I noticed they were seeking testimonials, and since I was mid-gush on their product, I submitted one.  Shortly afterward, I received an email from their director of sales and marketing asking which product I extolled.  I replied, letting her know it was the original. Her next email thanked me and asked for my mailing address so that she could send some to me.  Within a few days, I received a full bottle of 250 tablets along with 4 lifesaver-sized rolls for on the road.  Here's a shout out to excellent customer service, a rarity these days. Thanks, Dorie! 

The Potentially Marvelous Myth of Madison, Wisconsin

I was born in Madison, Wisconsin but my family moved when I was about a year old, so I have no conscious memories of the place as a child.  Last year, I had the opportunity to spend some time in Madison officiating a handfasting for friends who live there.  I didn't see much of the city, but I enjoyed the vibe of the land and the people. When I left, I thought I'd like to return someday. The newly married couple said they were planning to have an anniversary house party every 5 years.  I was already looking forward to my next trip.

Flash forward to last August.  I was in Vancouver, BC at a week-long camp and ran into an amazing homeopath, herbalist and friend from Salt Spring Island, Jamie Capranos.  I had not seen her in years and am always delighted by her company.  I scheduled an appointment with her during the week.  (This was during the time I was not on the antibiotics and was quite concerned about having a major set-back.) Toward the end of our appointment, she recommended a naturopathic doctor that she had studied with.  This ND had studied Lyme and co-infections in Europe and was treating people with good results.  Jamie wasn't sure where she worked, other than somewhere in the Midwest, maybe Minnesota.  

Shortly after I got home from Canada, I looked up the ND and she practices in - you guessed it - Madison, Wisconsin. Now, here's where it gets potentially marvelous.  What if the remaining ingredients to my healing came from the land of my birth.  It seems deliciously poetic and I'd like it to be true.  

I called her office yesterday and she is taking new patients and schedules appointments on Wednesdays. Now I'm going to search for the cheapest flights I can purchase with my frequent flier miles, check with my friends in Madison about staying at their place, and schedule an appointment to see this ND.  Hopeful!  Yes, it feels good.  Afraid! OK, that doesn't feel so good, but I reassure myself that the risk is worth it.  Better to try and fail than not try at all, and should I succeed, well, yay!!

I think I'll write to my co-Lymie and ask her if she feels like heading to Madison with me.  That would be very weird, surreal and likely quite fun.  Why not?

Today, I'm singing a new song - I love my antibiotics!

I'm 2+ weeks back into my antibiotic/anti-parasitic therapy and am amazed at how quickly some of those creepy little symptoms are receding.  Woohoo!  I am somewhat shocked by how quickly my perspective changed, but then again the anti-bug-drugs are using their super powers to apply the breaks to the roller coaster-esque feeling of barreling down hill at adrenaline-producing speeds.  It's almost exhilarating (and I can't believe I just wrote those words!)

Being the proverbial optimist, I'm a silver lining seeker and always have been.  So here's an odd thread to the silver lining.  I've recently been in touch with a long lost friend who now has Lyme and co-infections.  We've been sharing research, alternative therapies, doctor names, and any other useful (or potentially useful) information via phone and text.  We see the same doctor in Maryland and decided to make a girls' night out of our last visit.  I made back to back appointments for us and she sprung for a funky, comfy B&B in DC.  We met last Thursday evening and had a lovely dinner (I indulged in a Basil Mojito - Wow - had the aches to prove it later, but it was worth it.)  

I had a great time catching up with her.  We were able to share the nutty bits about this disease without editing or worrying about the impact on another.  What a breath of fresh air!  The evening ended as she told me the plot of a novel she's writing for my bedtime story.  It was AMAZING and I slipped off into a magical, deep sleep.

We slogged our way out of DC bright and early on Friday morning and headed up to the doctor.  It was quite surreal sitting next to her in the waiting room and comparing notes at a coffee shop after our appointments.  Such a brilliant combination of fun and duty and a lovely way to weave joy into despair and create more beauty.  Ahhhhhhh. Thanks, Karen!

This is day 2 of the new protocol

I thought I would share a visual picture of what I face in the morning. The beautiful glass bowl is amazing, magical and glittery, given to me by the artist this summer and filled with healing vibes. The peacock ore is there for 2 reasons: It's amazing, magical and glittery, too, and it reminds me that there can be great beauty in the darkness. This is one daily dose of prescriptions, vitamins, herbs, and supplements.  (I didn't include one of my favorite supplements EVER because I take 6-9 a day and it would make this pile look even crazier, but see below for more information on  incredibly amazing chewable papaya enzymes, especially if you have any digestive issues or want to support or tone your system.) You might notice the presence of chewable kids multivitamins and gummy "Omegalicious" chews in my medication photo. These are my indulgent treats to reward myself for taking all the other nasty stuff.

And here's the promised link to a supplement I discovered years ago that is the only one I've used religiously regardless of my health status.  It tastes delicious, satisfies my frequent desire for something sweet and is nothing short of miraculous in terms of effectiveness. It has been a digestive cure-all for me for years - one of those things I swear by, and there aren't many - and if you've been around me for any period of time, you've probably had them (or at least been offered a few.)  They're just THAT good!

http://www.americanhealthus.com/pages/products.aspx?prnt=Products&brand=AH&sku=001133

A strange new feeling has come over me.

I actually want to start my nauseating antibiotics and anti-parasitics as soon as possible.  I was feeling pretty darn good for the first 3 weeks once I recovered from the whole experience that ended in the ER and the cessation of the drugs, but then gradually and insidiously the TBD symptoms started coming back; a recurring twitch in my lip, eye spasms (I can't really describe it any other way) seemingly little things, then suddenly - WHAM! It's back! The awful body pain, exhaustion, appetite loss, and being driven to madness with restless legs (now under control with a homeopathic called Restful Legs. See their link below.)  Every day I'm getting worse and the scales have tipped from vacation to nightmare. As much as I hate to admit it, it's time to get back to it.

The only problem is that I'm still awaiting approval for the drug to help me tolerate all drugs. It would be funny if it wasn't so...not.  I'll call the pharmacy and see if they know how it's progressing. This is a weird dance and as my partner noticed, a full time job between dealing with insurance issues, doctors, pharmacy, and treatment trips, and the days I'm just "killing bugs," as he calls it when I'm too sick to do anything else.  Strange days, indeed.

http://www.restfullegs.com/  

I'm still in a holding pattern for my next steps

I am awaiting blood test results to follow up on my elevated liver enzymes during my ER trip last month. I returned home after 2 1/2 months on the road and saw my Lyme doc on Wednesday.  His approach is to continue to try to find antibiotics that I can keep down and give me more drugs to help me tolerate drugs.  Pharmacopia, is that you?  On Friday I saw my regular doctor, then trekked off to the pharmacy with a handful of prescriptions. After I got home, I realized one of them had not been filled and I called to follow up.  This is very weird to me, but the drug on hold is the drug to help me tolerate all drugs and my insurance company requires a verification from my doctor before they will cover it. The pharmacist said it could take up to 5-7 days so I'm officially declaring an extension to my drug sabbatical.  "YayBoo!" as we say around here.  Yay that my stomach gets a break and I can eat what I want, when I want.  Boo that my pain level and other icky ticky symptoms are increasing.

My Lyme doctor also informed me that the night before my appointment, all of his files for patients with Lyme Disease were subpoenaed.  It's hard not to feel defeated or like I'm engaged in some conspiracy theory but I am committed to a path of wellness, so there!

I also have very high hopes that I may be able to connect with an ND in Madison, WI that studied Lyme treatment in Europe and is having success in treating people.  She is teaching in Italy until the end of the month, so when she returns, I'll be writing and calling.  Keep your fingers crossed!