October 6th, 2018.
This May be a long post. Some pics may be graphic. My mind is scattered I have so many thoughts running through my head. I’m still tired, had a restless night and was awake until around 3 am with my head hanging off the foot of bed with nausea. I did wake up at 7:30am today feeling ok and we went up to the terrace for coffee and watch the sunrise. I changed a light bulb and am back in bed. That was using a lot of my 12 spoons already.
I also apologize in advance, I have built web sites, done SEO and love all kinds of tech stuff. Maybe I’m not thinking straight but when I started this blog I posted some pages as web pages and some as blog pages. I realized this after entry #8 and messaged tech support. I have to copy and paste each web page into a new blog post but must start from entry 1 to keep the order. Unfortunately all who have subscribed will get a notification for each one starting from the beginning. I am sorry for this but now I know how to write a simple blog. Go figure….
So yesterday was an emotional day. It should have been an easy day with excitement for my new journey. It was a day full of emotions and stress. Gary is the love of my life and is living this nightmare with me. We tend to focus on the person with the disease. But the truth is spouses suffer even more. They truly live the pain along with you as if their own. Then they have the added anguish of their own emotions. I can’t imagine how hard this must be. What toll this is taking on Gary? I feel guilt about that. Every time someone asks how I am doing it really should be how are you two doing. It really is about our journey through chronic Lyme.
Yesterday I still had the rash on my arms, my belly and legs. It started to tingle like pin pricks as well as itch. In the past it was a sign it was going to get worse. I’ve scratched some spots so much they have started to bleed. It makes you insane. Creams, oils, etc don’t work as it is the toxins coming through my skin from within. The joint pain and internal pain are a given every day. I stayed in bed all day leading up to my appointment at 4 pm. Gary had to go to the bank so we could transfer some money to the Dr in order to start treatment. Dr Ernesto Lopez and his nurse Pablo are so kind and compassionate. They have allowed us to pay in installments as they understand the the added stress of finances.
I became more panicked the closer it got to the appointment. I became bitchy. We had to stop at the lab first to pick up the remainder of my test results to take with us. We opened our gate to back the Jeep out and a Telmex car ( local phone company ) was completely blocking our driveway. Of all days.
I saw the Telmex guy at the end of the block. We have had our internet and landline phone down since August 23. Phoned in complaint after complaint and today they show up without notification to fix it and need access to the house. That poor guy. Wrong place. Wrong time. By the end of me chewing him out I was welling up with tears. Today was too important to be late for the hospital.
So the treatment was interesting. Started at 4 pm. It was a total of 4 hours and I’m usually in bed around 8:30pm lately. It started with a bio scan. Something out of Star Trek! I was hooked up to electrodes on my forehead, metal plates on my hands and bare feet. Less than 5 minutes and tada …a whole 3D image of the inside of my body. My organs in cross sections, individually, along with how well each is functioning. Each was color coded – grey for good, yellow for caution and red for critical. Overall was generally good but showed areas of concern. All from the effects of Lyme Disease.
We reviewed the results immediately. I will have another bio scan done at the end of treatment to show the percentage improvement.
- Brain – it found one which we both thought was good. Bad is that three areas are swollen and cause of my memory failures and seizures. Colour coded red.
- Liver – swollen and has 3 cysts. Colour coded red.
- Kidneys – enlarged and producing highly acidic urea acid and resulting in stage 2 kidney failure. Colour coded red.
- Adrenal glands – extremely large and swollen. Not functioning. Hormones out of whack contributing to rapid mood swings. Putting pressure on the top of kidneys adding to the lack of control to urinate. Colour coded red.
- Spleen – Swollen. Not effectively cleaning blood and storage of red blood cells. Colour coded red.
- Prostate – Swollen. Reduced functionality and we all know what that does. Colour coded yellow.
- Spine and upper backbone – Compressed in upper extremities. Cause of pain and tingling in arms. What’s interesting and what validated the whole test for me was him commenting that I must have been in some sort of accident and these areas would cause neck pain and pain in the back of my head. That was when I told him I was in a severe car accident in 1989 whereby I fractured C3, 4 and 5. The problem he described before hand were bang on what I have lived with since the accident. Colour coded yellow.
- Lower gut – no explanation needed. Swollen. Colour coded yellow.
- Arteries – Hardened. Common with chronic disease. Colour coded yellow.
Holy shit I was thinking. I knew the kidney stuff and the brain. But really? These little critters live in your organs but I had no idea. All in all considering my body is overwhelmed fighting hard the last 16 months he felt it was a good report.
Considering…. that word created a sense of panic inside but we wanted to be optimistic. Cautiously Optimistic.
I was then hooked up to a machine to perform plasmapheresis. They remove the blood in stages. The plasma and toxins are removed, and the filtered blood, less the plasma is pumped back in. This process takes about 3 hours. All in all they removed about 1 liter. Gary sat there through the whole thing. Well ok he had to leave when the IV was being inserted and needles were given. He did good. He didn’t faint.
Healthy plasma should be clear with not much colour. This is what they removed from me. I also received 1 of four vaccines that they made from my own blood, plus another IV of saline, blood thinners and various nutrients to help when I receive the stem cells.
This Tuesday I will receive 35 million umbilical cord stem cells from a universal type O- donar. That way there is no chance of rejection. They will be “preprogrammed” to become immune cells. Each will multiply 60 times. Over the treatment period I will receive 700 million umbilical cord stem cells. I may receive more once the remainder of my blood work comes in. Each dosage I receive will also be preprogrammed to become the organ or tissue that is damaged as found in the bio scan.
This is positive. They are telling me they can repair the damage. They can boost my immune system to fight off the future attacks of Lyme. This made me cry. I took a deep breath because no other doctor has said to me “we can repair the damage.” All I hear is “there is no cure for chronic Lyme disease Warren.” I already know that. This Doctor also told me that from the beginning. But what he did differently was to say we can reverse the damage from Lyme and keep your immune system fighting it. He didn’t promise remission either. This is inherently different. He is treating the effects of Lyme. He is teaching my body to fight. It will be an internal fight the rest of my life. But I’m being given the tools to take on that fight. It is deeply emotional for both of us.
After treatment #5 failed I said I wouldn’t fight anymore. There is no cure so celebrate the good days and muddle though the bad. This is Warren’s new normal. Emotionally I can’t handle another failed attempt at a promise of remission.
But somehow this just feels different. Cautiously Optimistic…
Warren Bennett – Chronic Lyme disease