It is so hard to fathom, 16 years this past June it's been. It's When Lyme disease and babesia entered into my busy and "successful" life.
What a twisted, confused, and mostly lonely path it's been.
This path has lead me here. To this point with you now....
Maybe with my Living the Lyme Life story as a background, you will understand why Iam about to leave in mere days out of the country to receive stem cell treatment for my Chronic Lyme disease and babesia.
I've always been an outdoorsy type my whole life. So that day, it was a fishing day with the guys in upstate New York on a vacation. As I have done numerous times in the past, I decided to go off in the woods when it came time to relieve myself.
Little did I know, this seemingly safe endeavor would change my life FOREVER...
I do remember a REALLY small black dot surrounding an irritated area afterwards on my upper thigh. I tried to pop it like a zit as I saw the tiny black dot fall out. It was so small I didn't see where it went. (nymph ticks are the size of poppy seeds). By the time I traveled home to Connecticut, I had a strange circular bulls eye red area on my upper thigh. I went to my primary dr. He knew right away what it was.
I never heard of this disease then. I was terrified tho when he said it to me. I have a disease I'm thinking all these bad thoughts and he saw that fear. He said "take 2 weeks of this antibiotic and you will be cured". I said oh that's great but why do they call it a disease then?
He LAUGHED and said
"I don't know why. "
Those words he spoke that day, still replay in my head often.
So I left the doctor, took my pills as directed, and went about my life as a busy retail buyer/manager. After getting pregnant a few years later, I was not feeling well. It was always attributed to being a rough pregnancy. I was pulled out of work due to blood pressure and other health issues at month 6. He was born healthy. Being a mom and working a demanding job was no easy task. So when I noticed the fatigue getting worse and pain issues, I thought it was just LIFE and getting older. I sucked it all up as the next year passed. But these ailments of pain and fatigue never went away and as time passed now more symptoms were added to the growing list.
So, I started out my trek to wellness. I saw many doctors and specialists. I had diagnosis's galore from many. But none of the treatments for these diagnosis's worked. So once all the doctors and specialties couldn't find out what was REALLY wrong with me, I was eventually sent to a pain clinic. Their answer was to "accept it" and "be comfortable" and then they loaded me up with a opiate cocktail. I did give in after many months of trying all other non-RX options. I always saw it as a short term thing, because I still knew I needed a true diagnosis.
Still always asking, looking, and searching for it....
I oftentimes gave blood for testing, as I did with my nurse at the pain clinic one day. A call a few weeks later changed my life forever...
Finally A diagnosis!!!
I was so happy although very short lived because I was informed this was not a good diagnosis to live with.
Chronic Lyme Disease and babesiosis
Boy in hindsight she wasn't kidding! My disease stage process was already quite advanced. I was told there are only 3 things to do in my case:
1. nothing (most drs told me to do this option)
2. Herbal route and other treatments within this category
3. IV antibiotics over a long period of time
I did #2 because there were no "Lyme literate" doctors in Maine to do #3. I Failed. So, I Tried another natural type doctor, I Failed again, even with the addition of long-term antibiotic pills.
So for a few years I went with #1
By now I was totally out of work. Had been for 5 years actually. I Won disability on the spot though trying my own case at year 5 also. But I was on the path of further decline health wise. It was time to do my only other option . The most dangerous, but by now I was having life threatening stats with my heart and BP and temperature regulation, so it was a no brainier.
I went with Dr H in Portsmouth NH. A IV PICC line was put in and I started my 12 month IV antibiotic protocol. No complications but first few months were NO FUN. After month 6 I decided to stop the pain medicine cocktail I always despised. There were Better options for me now and I was clearly going into "remission". So against all doctors advice, I got off all in 4 weeks instead of the recommended 4 MONTHS :). Got the picc pulled after 12 months in late May 2014
I got 25% of my life back :)))
I had been bedridden for years, so It was a true gift. Unfortunately it was too late to save my 16 year marriage, so my son and I moved down south to Birmingham Alabama.
I was told by many to go to one of the best Lyme disease doctors in the USA when my remission period is over. So I did. I got another picc line in and did 4 months of treatment, but complications of all kinds happened this go around. $40k later in dr bills, meds, equipment, and travel expenses later my picc was pulled. I'm no longer a candidate now or In the future in their opinion.
Stem cell treatment is relatively new in the Lyme disease arena. Through studying I knew only 2 places that did it the way it's helped so many with other diseases like MS. So I knew stem cell treatment was my next option clearly in my case. Luckily some of the doctors left the India clinic and opened up in Cabo Mexico a few years ago. The process is the same.
One week from today I start my 2 weeks of stem cell treatment.
I will be blogging daily on my stem cell experience and what it entails. The successes and downsides to:
Living the Lyme Life
-I wanted to thank Scott, my family and friends in my real life, and to all my outstanding cyber friends
I appreciate you all and YOU have been a blessing :)