Lyme Disease Activism

I need to pay it forward. So my new mission in life is to educate people about Lyme Disease. If I can save one person, it will be worth this silly blog, and the dollars spent to mail out this letter. I recently donated $1,000 to Open Eye Pictures who created the amazing Under Our Skin feature-length film.

As a result of my donation, I received five copies of the DVD. As a way to pay it forward, I plan to share these DVD copies with family and friends for the next year until I give Open Eye another donation, where I feel I can forward more copies of these DVDs. I want to pay my education and enlightenment forward. Thank you to Open Eye Pictures, to the light you shed on Lyme Disease, and so many other plights that our beloved country has to "not" face every day.

My open letter to the recipients of these DVDs...

October 21, 2010

I’m sorry for the generic letter but I have plans to send this DVD to many friends and family members over the next year. And this is the best way to proclaim my message to all of the potential recipients.

You’ve received this DVD because I need you to know that I have been diagnosed with Lyme Disease. My journey to this point has been long, arduous, and just a little bit scary. I have had a laundry list of very random symptoms for many years in my life. Just to name a few, I’ve suffered from:

·         chronic sinus infections

·         insomnia, where I literally do not sleep for several nights in a row before I pass out in the middle of the afternoon from sheer body breakdown

·         early-onset arthritis in my hands, knees, ankles

·         muscle tremors, mostly in my fingers and feet

·         restless leg syndrome

·         carpel tunnel syndrome

·         anxiety attacks

·         heart palpitations

·         debilitating exhaustion, thankfully only short stints of 1-2 days at a time

·         depression

·         extreme mood swings, including very short temper at times

·         two-year-stint of “dandruff” marked by scalp flaking and un-describable itch

·         night sweats that cause me to change my clothes 3 times per night and move to the sofa

·         vertigo and dizziness that make me walk into walls and furniture causing bruises

·         brain fog, where I don’t remember things I remembered just an hour before (“senior moments” at 35-36-37 years old)

·         floaters in eyes and chronic dry eye

As it turns out, all of these symptoms have been due to Lyme Disease.

I’ve been to many Doctors over the years, religiously keeping my annual appointments. I’ve been to several different Specialists, getting prescribed allergy shots, ENT treatments, counseling, and many MANY prescriptions.

I have (or “had” because I stopped taking or refused to take) two cabinets full of prescriptions that were given to me, at a very great financial cost. The funny thing is, I walked out of most Doc offices with wonderful FREE samples in a big fancy plastic bag. How nice of them, right? Not so much, as it turns out some of the free drugs I got have since been pulled from the market…

Moreover, the NEW drugs on the market (aka, those free samples) are extremely expensive. I don’t know about you, buy my deductable is $2,500 per year. That includes me and my Daughter for medical appointments and prescriptions. Unless we have a surgery in any given year, I would think it would take a long time to hit the $2,500 deductable. And it used to. But now, it really doesn’t take long to rack up $2,500 in charges when some of these prescription drugs are $20 or even $60 per PILL! And if you get a 10-day supply, you can understand when we reached our deductable in APRIL of 2010 (with absolutely zero surgeries or hospital stays). One of the prescription ear drops that Isabelle was given by the ENT was $240 for a 3-day supply (and no, I’m not joking).

Anyway, I went to special Doctors to treat my special symptoms, never realizing that each symptom may possibly be something more underlying. I never realized that maybe all of these weird things going on in my body may possibly be…ummmm…connected?

I never realized it, because my Doctors never, ever, once, even suggested it. Even though I told every Doctor all of my symptoms, all of my Medical History. How many hours did I spend filling out those blasted forms in all the new Doc offices, giving my complete history, listing all of my recent complaints, only to realize they would never feed them into any computer, never talk to me about those “other” symptoms, because I was only there to treat my ONE symtpom……(skin, nose, sinuses, heart, mind, spirit, etc.).

A small subset of my prescriptions (all at the same time, each Doc knowing I was on the other “stuff”)  in my house include:

·         3 anti-depressants ( from Primary Care, GYN, OB)

·         2 anti-anxiety pills (from Primary Care, Counselor)

·         beta-blocker (which acts as yet another anti-anxiety drug, from my Primary Care)

·         chemical shampoo (for the dandruff, from my Dermatologist)

·         prescription-strength pain killers (from my Primary Care)

·         prescription-strength anti-inflammatory (from Primary Care)

·         antibiotics (multiple rounds, from Primary Care, ENT)

·         steroids (multiple rounds, from Primary Care, emergency clinic, ENT)

·         nasal spray steroids (from Primary Care, ENT)

·         eye drops (from Eye Doc)

·         anti-fungal (from Primary Care, GYN)

·         hormones (b/c I was peri-menopausal at 35, from my GYN)

Needless to say, I was frustrated, confused as hell, and still feeling pretty sick.

But, therein lies the problem, was I sick? Every Doctor I had visited told me that I was just “too stressed”. They told me that it was “all in my head” and I just needed to exercise more (which I totally admit that I DO need to do). But, it was hard to get motivated to exercise when my joints hurt, my muscles were weak, my mood was crappy, I was Depressed, and I had a beautiful three-year-old baby girl who wanted to play Dollhouse with me. I just didn’t have the energy for all of it.

And poor Ed, we won’t even go into that, but the guy is a-m-a-z-i-n-g for putting up with this %#^%#$#&^ for so long . He’s very supportive, he came with me to one of my first Doc appointments after getting the LD diagnosis, and he understands what I am up against. What he probably doesn’t realize is that a lot of my “issues” (mostly mental) over the years have most likely been from Lyme Disease.

Now, all this stuff outlined here sounds scary, but I am doing very well. Considering what some of my friends (with Lyme Disease) are going through, I am doing very well, and have had pretty minimal side effects (from the treatments).

I am keeping my mind strong, and I am determined to fight this thing with every ounce of my being. But part of fighting this Disease, is making sure that I’m helping others. I need to educate other people, and support families who are suffering. That is why you have received this DVD. You may have received a hand-written note with a specific target to why you received it. Please take the time to watch the DVD. If you feel anyone in your family needs more information on this Disease, invite them over to watch the DVD. Take your time in getting it back to me, but I do need it back eventually, so don’t take forever J.

I have a long list of people that need to receive this same DVD after you, so please make time to watch it with friends and family and mail it back to me in the pre-paid envelope. This DVD will get mailed to another family who I think needs to see its message.

I hope you don’t think I’m preaching to anyone. I just want you to know that I am battling LD, and that I’ve taken on a new mission in my life to help educate the masses in learning about and fighting this Disease. Don’t be surprised if you see me on C-SPAN one day, talking to the Feds about this thing, because I have already been talking to some pretty big activist groups. Even if I get out of this un-scathed, I’m worried about the future, I’m worried about my Daughter, and I’m worried about the United States as a whole. It’s not just Lyme Disease either, there are a ton of bacteria and super-bugs out there just lying and waiting to infect us under our skin.

Thanks for listening to my diatribe. Thanks for watching the DVD. Thanks for sharing the DVD with your family and friends. Watch for updates on Lyme Disease on my blog, if you’re interested. One of my more interesting, entertaining, and disturbing posts is linked below describing my “night music”:

http://thesymptomsofme.blogspot.com/2010/09/night-music.html

Lyme Disease Support Group

My friend, Jamie, invited me to join her informal Lyme Disease support group after I was diagnosed. The group meets the first Tuesday of each month for dinner and discussion. There are six women so far, maybe more in the future as we meet more people. It's a fantastic outlet to vent your frustrations, discuss what phase of treatment we are in, share the various medications and supplements that we have been on, and most importantly, the various Herxheimer reactions that the individuals have experienced.

Since I'm just starting my treatment, it's important to me to know the possibilities out there. I know everyone's herx is different, but knowledge is power and I can't get my hands on enough information. This group has provided a much-needed outlet and sounding board.

I have plans to do some outreach in the next year, I've been researching various support groups, non-profit research organizations, etc. to see what volunteer options there might be. For some very odd reason (to me), there aren't a lot of events in Maryland to get the word out about Lyme, so I'm hoping to change that. I think it will help me stay focused on something positive, as I go through the highs and lows of what is sure to be a long and difficult road to health.

Lyme Disease Treatment Begins

I started taking my Doxycycline today. Three 50-mg pills daily with food. The herxes should begin on Day 4-5 typically which might land me in bed all weekend. I have several friends now with varying degrees of Chronic Lyme. Everyone's herx story is different. Some are in bed for a week or more, some are just really tired and take naps in the afternoon to get through. Many fall somewhere in between.

I'll try to post on a regular basis as I begin these herxes and list out my side effects.

Lyme Disease Has a Name

I updated the name of my Blog today. It started off called simply "The Symptoms" (cue The Simpsons theme song in the background).

But that was before I was diagnosed. Now that I know the name of my predator, I've renamed my Blog accordingly. Hoping more people with Lyme Disease will find me now.

Lyme Disease Research

My research into Lyme Disease began about four months ago, after a close friend was diagnosed. When I saw how sick she was, I realized that I probably didn't know everything about Lyme Disease that I thought I did. And to be honest, I'm not really sure what I "thought" I knew anyway. All I knew is that a few people have had it over the years, they take an antibiotic for a few weeks and they are fine. My friend's case was something totally different. So I needed to know.

It started the night she invited me to attend the Lyme Disease Info Session in our town back in May. I wanted to know more about LD so I could protect my own family, most importantly my young daughter. The outcome of that Info Session has led me on several months of internet research, and reading several books which I'd like to share because they were helpful to me.

If you have other books to suggest, please drop a comment. My bookshelf is never too full!

Cure Unknown, Pamela Weintraub

Pamela Weintraub's Cure Unknown was a perfect jumping off point in my research. The organizers of the Lyme Disease info session I attended highly recommended Ms. Weintraub's book which I ran out to purchase immediately. After reading this book, you will be more educated about Lyme Disease than most Doctors in our country (except for the fantastic LLMD's out there, if you can find one).

If you are unfortunate enough to actually have Lyme Disease, this book is best read in small portions. It can be overwhelming at times because of the conundrum that Lyme Disease sufferers find themselves in when battling the medical and health insurance communities.

But a warning. Whether or not you have Lyme Disease, if you read this book, it will make you never want to step foot outside again. Even your own backyard will become a dark and sinister place. When you're facing a predator that's the size of a freckle, it can make you feel as small as a grain of sand.

Lab 257: The Disturbing Story of the Government's Secret Germ Laboratory, Michael Christopher Carroll

After finishing Cure Unknown, I lent the book to a friend and went on a search for my next book. I just purchased and started reading Michael Christopher Carroll's Lab 257 : The Disturbing Story of the Government's Secret Germ Laboratory which is by far, much scarier than Cure Unknown. If you have any pent-up resentments toward the Federal Government, and if you think they are most likely not telling citizens the 'whole truth and nothing but the truth', and you want further reason to be incensed, grab a copy of Lab 257 today. If you suffer with Lyme Disease, it's a must read. I truly believe that I will beat this damn Disease with 2% medication/supplements and 98% grit and determination. For me, I need to be pissed off in order to fight, so I thank you, Michael Christopher Carroll, for giving me the fuel to make me fight Lyme Disease harder. I'm only 1/3 of the way through the book right now but I plan on plowing through the rest this weekend. It's a page turner that will leave your jaw dropped open.