May 29, 2019
It seems fitting that I restart my blog about this journey with Advanced Chronic Lyme disease on this particular date.
It was exactly 2 years ago today that my life changed forever. It was when I was bitten by the tick.
So as I start to recall the last few months I will apologize to all you who are following my blog. The months from November to March were difficult and I tried to write but couldn’t. I wanted everyone to see improvements and to know that it is working.
This is my savior. Dr Ernesto Romero Lopez. I’m including his card because they have been amazing. They treat several different immunodeficiency syndromes, cancer, the possibilities are endless with stem cells.
With this disease I am up and down. People see me if I am out and about and think I’m healthy. I’m certainly healthier”
What you don’t see is the emotional struggle inside. Still some days when I am in so much pain I need help to stand up, or go through 3 weeks of constant diarrhea I lay in bed and cry. I recently told Gary I can’t do this life anymore.
Short term memory is still a problem. I can’t remember what plans we made five minutes ago for the afternoon.
I get lost if I am alone. The anxiety when Gary is out of my sight is tremendous. I am on antidepressants and anti anxiety medication but…
A few months ago I told Gary I wasn’t feeling well so I stayed in bed. We had company from Canada so the three of them went out to a beach bar in the early afternoon. Gary told me where they were going. I woke up feeling better and went to meet them. I went to three places and couldn’t find them. I forgot where they said. I panicked. I couldn’t find my way back home. I’d see a landmark I recognized over and over again but for 36 hrs I walked around lost. I didn’t recognize the names and numbers on my phone.
The police were involved with a missing persons report. Gary and our friends found me sitting in front of Mega Supermercado crying. I didn’t recognize them at first but I knew Gary. It was 4 am and I was lost 4 blocks from home.
I have to thank my friends who searched for me for those days. The internal struggle and pain knowing that Lyme is doing this to me is unbearable some days. Depression and suicidal thoughts still creep up.
It’s not the first time I’ve been lost for a few days. We made some lifestyle changes to deal with this.
There are many many positive things too. I am no longer on Doxycyclina an antibiotic to fight Lyme. I am no longer on hormone treatments as my adrenal glands kicked back in. My kidneys are working again. No more threat of advancing to stage 3 kidney failure. I, by my own words have become gordo….. fat.
I was 167 lbs before I got sick and in great shape. I at Christmas last year was 106 lbs and barely able to walk. No more steroids for weight gain. I’m now 177 lbs.
I go every Tuesday morning for IV treatments, ozone therapy and stem cells. Some weeks if I have an opportunístic infection I forgo stem cells as the IV meds would kill of those little angels.
Dr Lopez reacts quickly to any ailments that arise The joint pain I experience is some days crippling. He now every two weeks injects a cocktail of anti inflammatories, a freezing and a medication to help with my seizures. Every second week I receive 140 of these injections into my spine. It is extremely painful process however a day after I am mostly free of pain and my seizures have decreased in frequency.
I have so much to share since I’ve been offline for so long. But that will be in post 15.
I promise to make an entry once a week either Tuesday after my treatment or Wednesday.
Advanced Chronic Lyme Disease