My Lyme Story

Putting the pieces of the Puzzle together

Let’s rewind to last year end of May 2011 (this is where I most likely got bit by the tick). I wish I would have known back then after coming back from celebrating my dad’s birthday in a park in Yonkers, NY that the bite that I had on my thigh (that looked like a big mosquito bite) was NOT a mosquito bite and actually a bite from a tick. If I had KNOWN, treatment would have been quicker, sooner and MAYBE I would have never had to go through all of this.  BUT, I always say, THINGS HAPPEN FOR A REASON, EVEN IF WE DO NOT KNOW WHAT THAT REASON IS NOW.

Let’s backtrack:

May 2011: Had a Barbeque at the Park for Dad’s B-day.

June 2011: Few days later after the Park, noticed a bite on my thigh, didn’t think anything of it and thought it was a huge mosquito bite. (I have always been a mosquito magnet all my life and didn’t think anything of it). I remember showing my husband the bite and also talking to my mom about it.

June 2011: Graduated with my Psychology Degree (one of the most happiest moment of my life).

Mid June 2011: Started getting random shoulder blade pain, thought it was my yoga practice, didn’t think anything of it.

Beginning of July 2011: Knee aches. One day I could not go down the mechanical escalator to catch the subway. It felt like I couldn’t bent my left knee. I thought to myself (STOP PRACTICING YOGA, you are killing yourself). I stopped my yoga practice.

End of July 2011: All hell broke loose. I started having breathing issues along with other symptoms. I couldn’t breathe, had to keep constantly yawning to catch my breath. I was also having gastrointestinal issues. I thought this was all related to stress since I was going through a lot during this time.

My body felt different, heavier, different. I would come home from work and all I wanted to do was lay on the couch, I would just throw myself. I thought, I must be tired from work, again didn’t think anything of it. Not putting the puzzles together.

 August 2011: A month after my breathing problems started, I decided something was definitely wrong with my body.   It was heavier, I couldn’t breathe, certain parts of my body were buzzing, twitching, feeling cold sensations in my legs like water was being poured on them, headaches (which I never in my life had)..off-balance, heaviness in my chest like an elephant was sitting on me and was pulling all my gravity to the floor. Every time I stood up, it felt like I was literally sinking into the floor. I went to  2 Emergency rooms. All the blood work was fine, all the EKG’s were fine, they sent me off home. First ER diagnosis:“honey, you have anxiety”, Second ER diagnosis:“honey, you need to have a baby, start a family, this will take away your anxiety”.

Mid August 2011: I went to see different specialists, Ear and Throat doctor (since my throat was hurting), cardiologist (for heart palpitations I was having), Rhemautologist (for my knee aches), Gastroenterologist (for my stomach issues), Neurologist (for my legs, which felt like I had 100lbs on top of them (who preformed, MRI, Walking tests etc), all of these tests from the specialist came out perfectly normal and clear.

I was appalled, everyone around me thought I had anxiety, even my family and friends, but TRUST ME I never in my life EVER had that KIND of anxiety. I have gone through many anxious/stressful times in my life but never had that kind of dreading anxiety feeling of death.

September 2011: I carried myself with the “anxiety” diagnosis, from Mid August till the end of September. Trying to convince myself of it. I started buying anxiety books to help me, taking calming baths, eating healthier, BUT nothing helped. In the end of September 2011, I remember telling my supervisor that I felt like I was dying, I needed to see a doctor right away. She found a doctor close by that she went to and I went to that doctor.

Blood tests were done, LYME DISEASE, were one of the tests that luckily she tested for. Luckily, I signed up with a online system that gives the blood tests results online. I noticed, that I had a ELISA test done for lyme disease and it was positive. The Western Blot Test (which is also another lyme disease test) was highly positive with about 7 bands in IGG and 1 band in IGM. When the doctor called me about the results, she said “NO!, you do not have lyme disease, you have IGG (which means past exposure), your body had lyme disease at one time but now has fought it”. She also took a potassium test, which was low and prescribed me potassium pills.

Missing Piece of the Puzzle- I Finally put the mystery puzzle together!

That weekend, I searched online  for my symptoms of lyme disease and they matched my symptoms. After about one week after the “Doctor” told me I did not have lyme disease, I took my printed results and yet went to ANOTHER emergency hospital in NYC. I said “Listen, I am dying, I need you to prescribe me antibiotics, I think I have lyme disease”. Sure enough, they agreed and I left with my first prescription of 2 weeks of Doxy to the Pharmacy..if ONLY I knew that it was not the end of my story.

October 2011: After I ran out of doxy, I needed to find an infectious disease doctor, to prescribe me more, since I was still feeling awful and actually much worse on the antibiotic than off. Wrong IDEA. He prescriped me just 2 more weeks of doxy and said that I would be fine. I spoke to him about further treatment and he denied, saying that the long treatment by those other physician’s was baloney. I believed him. (I wanted to believe him).

November 2011: I found another infectious disease doctor, who prescribed doxy for about  2 months, she also tested me for other infectious diseases, which showed I had Babesia, another wonderful illness that the tick leaves behind. (Deep down I knew that I needed further treatment, I became my own advocate, researched on the illness, it’s devasting affects on the body and finally sought out a LLMD doctor, but my appointment was not until 2 months from November).

December 2011: My worst Month, no antibiotics, until I saw my first LLMD(Lyme Literate Medical Doctor) in January 2012.

January 2012- Now.  I have been on High doses of antibiotics, antimalarials antibiotics for about a few months and have been feeling much better then before, although still not my best. My story with lyme continues and from here on out I will start documenting my journey.

Did it REALLY have to take 3 ER visits, various visits with specialists to get a diagnosis?.  Unfortunately, this is how lyme disease mimics all other sorts of diseases and a correct diagnosis is sometimes missed. My diagnosis took about 4 months, while others struggle much more time  trying to find one.

*Moral of the Story, be your own advocate/your own doctor, you KNOW your body best. If something doesn’t feel right, fight until you know what it is. Listen to your body and listen to your intuition, it never fails us, it didn’t fail me*

15 thoughts on “My Lyme Story

  1. Lemons 'n Lyme

    Hey girl, I think you started following me a while back? And for some reason I couldn’t get on to your blog to see it. It’s always nice finding other people suffering with Lyme! Feel free to contact me if you ever need to talk 🙂

    Reply
    1. rominalifehappens Post author

      Hi! I live in NYC, and my llmd is located in NY (upstate NY). I am still on antibiotics at the moment, just amox and azithromax (high doses). My protocol has not been that aggressive with many antibiotics. I can say that right now I am about 85% better. I still have sysmptoms especially (air hunger, slight tingling and stiffness) but overall much better. I like you have low WBC count, which is scary, but llmd says nothing to worry about.

      Reply
  2. Pingback: Anxiety | Rhapsody in Lyme

  3. Miss Diagnoses

    Horrible! I had a similar thing happen to me–positive Western blot and doc said I didn’t have Lyme. I am trying to write a post about it. Yours helped me. Good for you for researching.

    Reply
  4. Miss Diagnoses

    Thank you! I will try to include mire drawings! I live in NYC too btw. I am seeing someone in the city and I also have a low WBC count. My doc is not being aggressive with the abx…just doxy and some antimicrobial herbs. Was thinking of seeing the famous guy upstate. Not sure though…I might stick with the current doc a bit longer.

    Reply
    1. rominalifehappens Post author

      Low WBC occurs alot during treatment. I would recommend being aggressive on treatment, I wasn’t with my first LLMD and I think that stalled my recovery. Either way, keep at it until you feel normal or back to yourself!

      Reply
  5. Christine

    Wow. Just…wow!! We have SO much in common, even our timelines of getting sick; they’re only a few months apart!! I look forward to reading more from you.

    Reply
  6. tonbrew

    Thanks for following, and for sharing your story! Anxiety…and have babies…maybe those super silly answers helped you not accept them as your true diagnosis. I got diagnosed with “Chronic Fatigue Syndrome Syndrome prompted by Mono”…maybe if they had said “anxiety” I would have not been so quick to trust the diagnosis! I hope you continue to improve!

    Reply
  7. Patrice

    Oh my goodness. So many similarities…I tell everyone, if you know something is off with your body, you must become your own medical detective. I was told I had Epstein Barr, Chronic Fatigue, West Nile, depression/anxiety, an autoimmune disease…the list goes on. Thanks for sharing your story. The site is great! Looking forward to reading more.

    Reply

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