Thursday, September 19, 2013

Reintroduction and updates

I know that I have several new readers and based on an email I received I did want to reintroduce myself and give an update on how I'm doing.  I've taken bits and pieces from old blog posts and introducing some new information.  But first - I will answer a few questions that I received in email this morning. 

  • How well are you feeling into your treatment right now?
  • How long have you been in treatment?
  • How bad was it at the beginning?
I have been in and out of treatment since March of 2007.  When I first began treatment, the herxheimer reaction of traditional oral therapy was overwhelming.  I was barely able to function, but pushed through to work full time. However,  there were days where I had vertigo so badly and I even had hallucinations.  It was absolutely terrible.  So we swapped up therapies to alternative treatments.  Slowly, but surely I improved.  I went through a period of remission and did very little treatment during that time. Although I didn't feel completely healthy, I felt better than I had in years.  Then the fall of 2011 happened.  It was one of those things where I felt great in the middle of July of 2011, but at the end of July and August - I began doing what I call the "lymie slide,"  and then by September I felt completely miserable.  When I fell "off the wagon" in the fall of 2011, I fell hard.  At first we tried to go with alternative methods, but when those didn't seem to be working - we went hard core with oral antibiotics.  Then in July of 2013, I was so miserable that it was hard for me to even function.  I stopped going to things I always did (like the Lyme support group in the area that I've been leading lately).  So I began a strict detox protocol which included several things - supplements, lots of water, rebounding, lymphatic massage and ionic foot bath. I feel better than I did in July, but I am no where close to where I was when I was in remission in 2010. 

Now onto the "back story" -

I began this blog, Living the Lyme Life, in September of 2008.  I had already been in treatment for Lyme for 18 months and wish I had begun the blog earlier.  My name is Jennifer and this is my blog.  I began the fight of my life in 1995.  I wrote specifically on the years between 1995 and 2007 on a blog entry entitled Jennifer's Background Story.  This was specifically about when my fight began and the doctors I saw.  It talks about some of my experiences and also my experience the first time I saw my Lyme Literate Doctor.

Since my Lyme diagnosis in 2007, I've dabbled in other diagnoses too. I've had mineral deficiency, progesterone deficiency, heavy metal toxicity, multiple co-infections (including Bartonella & Babesia), anemia and multiple other health issues. A PICC Line was inserted into my right arm in July 2008 and I battled keeping it safe daily until February 2009.  Thanks to my wonderful nurses, doctors, insertion team and my husband, I was able to keep my line much longer than I should have.  I used it right up until the night before it was finally pulled and based on how it looked when we pulled it, it probably should have been pulled a few months prior. 

 Most people assume that because I had a PICC line that it was used for antibiotic therapy.  However, it was not used for this.  We used the PICC line for IV vitamins, minerals and other supplemental therapies such as Chelation for the heavy metal toxicity.  In addition to these things, I used an experimental IV protocol for about 9 months.  It is no longer available and I rarely talk about it because of its controversial nature.  However, I feel like that protocol did more for me than any other protocol combined.  It brought me to remission until the fall of 2011 when I slipped out of remission.

In addition to traditional oral antibiotics, I dabbled in alternative therapies including Low Dose Naltraxone.  Many have raved over this therapy to help with immune function, it gave me terrible headaches and caused sleep disturbances.  After trying for over a year to increase the dosage with little success, I gave up.  I also used some low pressure Hyperbaric therapy.  It relieved many of my symptoms including my terrible headaches, fatigue and mood swings, but due to symptoms of Babesia flaring I had to stop getting that therapy.

I've utilized a variety of homeopathic remedies and still use some of them even today.  About a year ago, I began a new antibiotic regiment taking three or four at a time.  I pulsed and even considered getting another PICC line to use specifically for IV antibiotic and supplemental therapies.  However I continued to get worse on the oral antibiotics. I pushed myself from January to May 2013 to live a more "normal" life and paid the price in June and July.  I felt that 95% of my life revolved around my Lyme/Babesia/Bartonella symptoms. I had some really bad days.  So when I returned for a follow up in July I practically begged to go another route.  So we decided to strictly do a detox protocol.  I have improved slightly, but no where near ready to return to what others call a "normal" life.  I worked full time from the time of my diagnosis (2007) until December of 2011 when I finally made the decision to quit my full time position.  At the end of my notice, my boss offered and I accepted a substitute position with the caveat that I could say no if I was unable to work due to health or appointments without them making me feel guilty.   So I get to go in every now and then and it gives me therapy for my soul.

My husband and I got married in 2000.  He is my rock.  He supports me with his quirky sense of humor and his determination to get to the root of my health issues saved my life.  Together, we have rescued two dogs.  We adopted a lab mix from the SPCA and a rescued Dachshund.  In May of 2012, we moved from our first home into a new home. 

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