I finally decided to pick up the phone and write an entry. I owe it to all of you who helped me with this treatment. I owe it to all those considering options for treatment of Lyme.
I wanted my future posts to be upbeat and positive. That’s why I haven’t written. I received a second round of stem cells on October 23rd. There was a two week hiatus. I am supposed to receive them every Wednesday. Every Monday I am supposed to receive IV therapy with nutrients and energy boosters to prepare my body. This is not happening in my specific situation. There has been too much damage from Lyme and the energy demand on my system with receiving stem cells is too great. I have crashed hard again.
We were thrilled at the fundraiser event on October 14th. The food, the music, the venue all spectacular. It was an emotional day to see all those wonderful people come to support the treatment. The emotions, and being up all day was hard.
My Dr needed to boost my system more before he would give me more stem cells . I was excited to learn I was well enough for them during my IV treatment and would get them October 23. I was given a low dose of 35 million again to test my body’s reaction. I had just slept day and night for 1.5 weeks. After receiving the second dose and over the ensuing weeks I have had setback after setback.
Symptoms are returning. Rapid weight loss. Down from 158 lbs to 142 lbs and continuing. Days of painful diarrhea. Insomnia for 3 days. I am having cognitive issues. I forget simple things. My rash has returned this time on my face, hands and feet. Painful burning and itchy. I have scratched so much I am bleeding.
I have only had IV therapy again since October 23. I already behind 3 treatments. My Dr. is doing everything he can to boost my system. I have had various vaccines. Injections of embryonic cells. Various ion creams I apply on my lymph nodes each day. Some from a compounding pharmacy I apply on my wrists… pregnenolona 50 mg/g ( endogenous steroid and precursor/metabolic intermediate in the biosynthesis of most of the steroid hormones, including the progestogens, androgens, estrogens, glucocorticoids, and mineralocorticoids – used for fatigue, depression, arthritis). A topical cream DHEA 100 mg/g ( male hormone replacement as my adrenal glands are not functioning well )
A host of other medications to boost my system. Some of which are also antibiotics to combat recent co-infections. A controversial “medication” called MMS. It is supposed to acidify my system enough to help create an environment that bacteria can not thrive in.
This last Saturday. November 3rd we were supposed to meet friends in old town for a street festival starting at 2 pm. I was not well and stayed in bed. Gary went to meet everyone. By 4 pm I thought I was well enough to join. I got on the wrong bus and got lost. I Panicked. Had a subsequent seizure and was hospitalized over night. When I have a seizure I am disoriented and confused. A cab driver apparently took me to the hospital. I was coherent enough at 6 am to know to call Gary. How awful for him.
I stayed in bed all day Sunday Nov 4th. Monday I was to receive my IV treatment but instead another plasmapheresis was performed whereby my blood is cleaned similar to dialysis. Approximately a liter of plasma is removed with toxins. Dr felt it went well and yes, it was as bad as it was the first time.
Today I mainly rested as I am extremely week. Shaking, cold, and dizzy. But I will resume stem cell treatment tomorrow again.
It has been an emotional journey again these last three weeks. I at times wanted to give up. I secretly cried wondering why I am doing this all over again.
But yesterday’s appointment made me feel better mentally again. During the plasmapheresis we asked the dr if he had heard of Dendritic cell therapy. We had read about it from an article published from Lyme Disease Mexico, the previous clinic I was being treated at. It is showing positive results in treatment of Lyme in clinical trials. Well what restored my positive outlook yesterday was…
I will be receiving this treatment.
As soon as my body is stronger and they boost my immune system a bit more I will receive it! It is like a vaccine. They will inject dead Lyme bacteria so I “learn” how to fight them. This is great news as maybe there is a possibility of a cure? Or at least my body being able to keep the numbers down so I am asymptomatic?
Tomorrow morning is another big day.
Warren Bennett – Chronic Lyme Disease