A Priest, A Rabbi, and a Tick Walk Into A Bar…

by Eric Rutulante  •  June 12th, 2010  •  23 Comments »  •  LymeBites Blog, Lymenaide Awareness Campaign

…okay, I have no joke to go along with that, I just wanted to get your attention.  Writing these posts are the easy part, it’s the titles that are tricky!

At about 2am last night I began a herx of which I have not seen in many months.  I’ve only had one that bad since I began treatment a year ago.  (For those new to the lingo, a herx reaction is what happens when antibiotics kill the Lyme bacteria, the bacteria die off often makes you feel worse than the disease itself, but it’s a good sign because the bugs are dying…you just have to give your body time to get rid of them).

So today is not my best day for writing.  After a night like that my entire body is just worn out.  In fact I couldn’t drive today to go to a function I had in Albany, but instead had to have my Mom drive me up so I could still make it to a gathering of my office mates and co-workers (which I guess is really the same thing). 

But today is an important day that I really have to write about, if only for a brief time, and if done while in the throws of a herx reaction.

It was one year ago today in the middle of the afternoon my phone rang, it was my Dr.  “Eric” she said, just beaming with excitement, “guess what!  You have Lyme disease!  Isn’t that great?  Everyone here in the office said they’ve never seen anyone get so excited about someone having Lyme disease, but I told them there has been something wrong with this guy and we just couldn’t figure it out!”  She told me she’d call me in 3 weeks of doxycyline and I’d feel better in a few days.  I figured I’d even be able to make the Dave Matthews Band concert 2 days later if I was gonna feel good that quick.

On that day, one year ago today I was so happy it wasn’t MS, or Chiari, or a brain tumor.  It was something that would just go away.

A year later, well over $40,000 out of pocket, 8 different types of antibiotics, countless supplements and natural medicines, and 365 days of stress and worry for my loved ones, I can honestly tell you that never in my wildest dreams could I have EVER imagined what I was in for.

Under Our Skin was just showing in Albany that next week.  By that point in time I was so sick I was calling friends to tell them what things they needed to come and get out of my apartment because I was sure I was going to die.  That was my first herx, but nobody told me that would happen.  After seeing the trailer for Under Our Skin my friend Mark said to me “you realize you may never get better?  I watched that trailer and then did some reading, some people never get over that sh*t (he always had a way with words)”.  I told him his glass was always half empty, there was no way I could be sick forever.  Lyme disease was not a problem.  If it was I would know about it since I grew up and spent all but 4 years of my life living in the heart of Lyme disease country.

But I was wrong.  Almost deadly wrong.  I honestly believe to this day if  I had not found Dr’s who were willing to treat me (at first it was people who didn’t know what to do for me, but they knew they had to do SOMETHING) that I would not have made it.  I know I was close to death on several occasions.  And yet, I was wrong.  Somehow I had lived here all that time, surrounded by Lyme disease all that time, and I didn’t know a damn thing about what Lyme disease could do, all that time.

I still look back on one year ago today and wish it was a different diagnosis.  Even cancer, because I could have either fought it or died from it, but at least there would be an outcome.  Now with Lyme, I don’t know if I’ll ever have an outcome.

So that brings me to my point.  And to all my friends and family who do not have Lyme, I do not apologize for the constant flow of emails I send out to you, to those of you on Facebook I do not apologize for post after post about Lyme disease.  I do not apologize because nobody told me what could come of Lyme disease, and I wish every day that someone had so that I wouldn’t be in the condition I am in now. 

So I am going to fight to make sure each and every one of you know that this is what Lyme is.  This is what Lyme does.  This is what Lyme looks like.  This is the face of Lyme disease. 

face of lyme crying 

I can’t let this happen to another generation of people.  That is why today, one year after the diagnosis and promise that I’d be better in a few days, I am so proud to be part of a team with Ashley, Nani and Candice, as well as the hundreds of others who help us on a daily basis to get the word out there that Lyme disease can kill you.  And if it doesn’t kill you, it will take away your life.  So we join as a community to continue to fight to save lives.  Will you commit to join with us in making sure others don’t suffer like this?

23 Responses to “A Priest, A Rabbi, and a Tick Walk Into A Bar…”

  1. Eric Rutulante says:
    June 12, 2010 at 12:46 AM

    Thanks to someone for thinking to take this picture in a moment of weakness, knowing it would come in handy some day.

  2. Martha Boykin says:
    June 12, 2010 at 8:29 AM

    I have experienced a herx. After beginning antibiotics, I waited for one, but it never came. I have mixed feelings about it. I hear it is awful, but at the same time, if you don’t have them, then are you really getting better? So, because I haven’t herxed, does that mean I am not getting rid of the Lyme? I hope you come out of the herx soon. You are in my thoughts.

  3. Martha Boykin says:
    June 12, 2010 at 8:29 AM

    By the way. . . loved the title.

  4. Christine Guenette says:
    June 12, 2010 at 10:07 AM

    Eric,

    I, too, thought, hey, this is great, now I know what’s wrong with me. Well guess what…..after 3 weeks of Tetracycline, I still feel like crap, I’ve thrown up twice this morning, and I’m scared that I’ll never be back to my bubbly self. I know there are people that are much worse off, suffering from much more horrible illnesses. I HATE to complain, really, I believe that was put on this earth to HELP people, and I’m failing miserably at it now.

  5. Eric Rutulante says:
    June 12, 2010 at 12:17 PM

    Christine, you are right..it is a tough and awful journey. Just remember we keep fighting…because not only will we be our “bubbly” selves again…BUT…we’re going to be a much newer and improved version when we are better. And we WILL get better Honey!!! XOXO

  6. Eric Rutulante says:
    June 12, 2010 at 12:18 PM

    Martha, I’ve heard Lyme Docs say while speaking that just because you don’t have a herx doesn’t mean the meds aren’t working….there are many many factors that go into it, perhaps a lower bacteria load, perhaps something else you are doing to help detox the body. Very hard to say….but talk talk to your Doc about it (if you have a Lyme literate one of course).

  7. Angela Castle says:
    June 12, 2010 at 1:03 PM

    Eric, you are such an inspiration, I love you courage and tenacity, it really gives me hope. You are so gifted in writing, I love reading it, it’s everything I’ve wanted to say but couldn’t find the right words. Sending you a big huge hug!! You will get well, we all will. It’s so much easier to fight this battle with support from others who understand. Thanks for all you do, you are a champion to our cause!!

  8. Eric Rutulante says:
    June 12, 2010 at 1:28 PM

    Thank you Angela…we are a team, and we are all gonna get each other through this pure living hell that we are in. It WILL get better for each and every one of us. It has to! Keep up the good fight Angela…we have to inspire each other to keep ourselves going. XOXO E

  9. maryann says:
    June 12, 2010 at 1:56 PM

    it gets better, never give up ever give out and ever give in.
    it is a tough one. sometimes 2 steps forward and 1 back or even 3 back, at some point the good days far out number the bad, the herxes get less severe and shorter..
    hang on and hang in..

  10. Tam says:
    June 12, 2010 at 3:18 PM

    It does get better, but never goes away–it is hell and isolation all in one, but at least we have each other on FB?! People/doctors who think ‘it’s just lyme’ are so ignorant and uninformed–unfortunately that is a very prevalent misconception. We’ll have a voice one day, we need to continue and speak out so that no one elses suffers needlessly. Thanks to Eric and so many people like him we’re heading in the right direction!

  11. Connie Babcock says:
    June 12, 2010 at 3:38 PM

    Each time I read a post from a fellow lymie, I find it inspiring.I may be one of the oldest lymies on here. I will be 61 in July. I have tried to tell my family and friends what I am going through, but they just don’t get it… My husband has had lyme app. one year. Some times he is understanding, yet other times he tells me how lazy I am. I go outside and try to ride the lawnmower but I get so exhausted. I try to clean and cook but some days the most I can do is get from the bed to the couch. They think I have had LD since I was in my early to mid twenties.The doctor told Chip (my hubby) that he knows how bad he feels and I am seven times worse.
    Please keep posting? I look forward to reading each and every post each person puts on here. It hurts my fingers, hands, arms, and back to type.
    May God Bless all of my fellow lymies!

  12. Nani says:
    June 12, 2010 at 8:57 PM

    Eric, I too have no apologies for the numerous posts about Lyme on Facebook…I wonder how many “friends” have removed me from their feed! lol. I may not have Lyme, but I have been touched by the countless stories & people that I’ve met because of it & will continue my activism & awareness efforts.

    Wishing you and all my Lyme friends the best of health,
    –Nani

  13. Eric Rutulante says:
    June 12, 2010 at 9:57 PM

    Nani…you are an inspiration to all of those with Lyme because you don’t have Lyme and you fight so hard. You are like the leader of those who are NOT sick to take part in helping keep others from being sick. Keep up the amazing work. Thrilled to be working on this with you.

  14. Eric Rutulante says:
    June 12, 2010 at 10:00 PM

    Connie, thank you for sharing. And absolutely, GOD BLESS OF US LYMIES! It’s been an honor and a pleasure to work with you sharing awareness on Facebook and stuff. We are here to give you the support you may not get from your loved ones. I am so blessed with so much support from my own, but I know how terribly some others suffer. Healing to you Connie.

  15. Eric Rutulante says:
    June 12, 2010 at 10:01 PM

    Exactly Tam. Together we can do it. Until there is a cure. But for now we learn to live with it the best we can, and thanks to Facebook and the internet we can get the support we need and can give to each other. And spread the message of awareness!!

  16. Geri Tresvik says:
    June 12, 2010 at 10:18 PM

    Please keep up the good work, Lyme awareness is such a critical effort. No one should have to face what we are going through.
    Reading your posts has helped me keep hanging in when I feel like giving up. My family tries but they really don’t understand. I’ve always been the “responsible” one, the one who made sure all the necessary things got done. Many of them aren’t getting done any more. I keep moving through the pain and exhaustion, fighting the urge to scream, trying to be the wife, mother and daughter I have always been. I’m afraid if I stop moving, I may never start again. Many nights I lay on the couch, alone, crying, unable to sleep. Then, like now, I get online and read posts from you and Alyssa and other Lymies. From them, I realize I am not alone, that others are fighting too. For treatment, for health, for awareness, most of all, for CHANGE. I know it will come, after all, we’re Lymies, we can’t afford to give up.

  17. Eric Rutulante says:
    June 12, 2010 at 10:36 PM

    Geri, work it girl!!! We are here for you as you have been here for us. I still remember that first wonderful hug when we met in person at the UOS screening. THANK YOU for all the support you have given to us in getting this campaign going. We are going to succeed, we are going to get better, and we are gonna win this. Thank you for being such a warrior for us all Geri. XOXO E

  18. Ashley van Tol says:
    June 12, 2010 at 10:38 PM

    Aw man, you made me get all teary eyed and sh*t.

    Not to fear, our dream team is here! We will make difference. We already are. I get a few messages a week from young people (I know because there profile names are related to TVD) telling me how they never knew about Lyme and how they are so thankful to us and the VD’s cast for teaching them. That is pretty special!

  19. Eric Rutulante says:
    June 12, 2010 at 10:41 PM

    Ashley…we really have made a difference. Not a day goes by I don’t see the results already…and we’re just getting started. Thank you for including me in all of this and partnering with me. I get goose bumps when I think about what’s ahead of us. We gonna work it!!!!

  20. Sharon Rainey says:
    June 13, 2010 at 7:35 AM

    Simply perfect, Eric. Thank you for wording it the way it needs to be written.

  21. Karen Neely says:
    June 13, 2010 at 11:56 AM

    Sometimes you make me laugh my *ss off Eric; this time I cried and cried. Bless you and so many others for getting the word out. You all have worked so hard and because of this, I can’t believe all the people who have asked me about LD. I’ve learned more myself this past year then I have the previous 19 years suffering from this disease. I am just in awe of all that you wonderful people have accomplished!

  22. Eric Rutulante says:
    June 13, 2010 at 11:01 PM

    Thank you for reading Sharon….I try to take advantage of the days I can think clearly…for many months I could not write let alone think, so I just hope I can say what others are too sick to…for themselves and their caretakers.

  23. Eric Rutulante says:
    June 13, 2010 at 11:04 PM

    Thank you Karen. That was a truly beautiful email…and I appreciate the words of encouragement, as well as for the support for what we have done and continue to do. It’s wonderful to hear that you’ve been able to share with so many people who have been interested. As always Karen, thank you for being a “fan” and letting me know when you’re laughing…it’s good to know I can help brighten someone’s day. Love, E

Leave a Reply