Spoonie Stories: Join the Lyme Community!

by Nicole Mazziteli

This is me:

I didn’t see the tick bite or a bulls-eye rash (less than 50% of Lyme patients do).  After, many different symptoms started showing up, many different doctors and specialists gave me meds to mask my symptoms. I was misdiagnosed with Lupus…This caused a delay in proper treatment for me, as I was put on steroids (which feed Lyme) for Lupus… Through a Lyme lab, about 5 years ago, I found out that I have Lyme, Babesia & Bartonella. Since the proper diagnosis, I have spent thousands of dollars trying to get well.  The doctors willing to treat us don’t participate with insurance companies (that’s another story).

My name is Nicole Mazzitelli & I have been sick for 7 long years…

How I feel:

Chronic Lyme Disease is so hard- it’s never just Lyme… It doesn’t go away if you are not in for the long haul. I believe the highest suicide rate in any group – are Lyme sufferers that can’t see the light at the end of the tunnel & can’t bare to suffer one more minute. Each time that I hear a Lyme patient dies (all the time), a piece of me dies with them. It really brings me down. I feel like we need to stick together and fight. We can’t have quitters!!! I have tried so many different doctors (mainstream, specialists, holistic, naturopathic, and out-of-pocket Lyme Literate Doctors, medicines, protocols, supplements, you name it…) I am now seeing my 3rd Llmd, a 2 hour drive, does not take insurance, but extremely aggressive & intelligent and most importantly- very educated on Lyme!  (Former ILAD’s president I believe) oh and he is really cool. I’m so thankful for my nurses- who deal with me (good days, bad days & atrocious days) on a daily basis!

In May 2015, I added Bee Venom Therapy to my current protocol- (BVT).  Bee Venom has been proven to KILL Lyme! Dr. Eva Sapi has a study being published on this.  I am determined and on a mission to KILL every last spirochete in my body!!! I constantly pray, I meditate, I read positive information & listen to positive affirmations…trying to keep my eyes on the prize (my health)!

I try to believe: “The worst breakdowns, lead to breakthroughs!” Usually, I can stay strong (appear to anyway). I’m trying to fake it till I make it… There are so many disappointments with this illness- people I thought were my friends for life, got annoyed with me not being able to commit to their plans, or having to cancel plans, or just hearing me on bad days.

11062731_10206695233195202_1954838675109053847_nIt’s a shame, but I understand that they don’t understand! This sounds ridiculous -but I am so thankful for Facebook! There are many others (lymies) facing what I face – some are worse, some not as bad- but wow- what support I get from fellow Lyme warriors around the world!!! I have lost so many friends I thought were “friends for life”, but Lyme has made me find so many great new friends/people who I now look to for support and vice versa…

I hate this. It is so hard. I am so sick of being sick. I’m sick of taking medicine, getting infusions, procedures, taking supplements, detox baths, detox treatments, doctors appointments, specialists…Researching and trying all of the Lyme ammunition I can find is so overwhelming and expensive. I’m exhausted – mentally and physically.  I’m sick of saying I have Lyme disease and I wish I could ignore it instead of thinking about it 24/7, I’m sick of explaining it! I’m sick of people who don’t take the time to understand it.  It would be so much easier if I could give up.  But I can’t!  That would be so selfish.

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