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Carrie talks of Shingles, PHN (nerve damage) & CPRS (pain) - 3rd April 2019 (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
I am Carrie from the United States. I had shingles at a very early age. It's a very complex story so then I had a diagnosis of PHN that's just nerve damage due to the shingles and that then led to CRPS, which is chronic pain syndrome.
Before I had shingles I was extremely healthy. I was finishing my master's degree in teaching and was just wrapping up my thesis project.
I had shingles after coming back from Jamaica from our honeymoon and because the bumps were in my neck and back I didn't notice them straight away so when I went to the doctor
he had a good indication that this was going to be problematic since it took so long to start antibiotics in the first place.
I lost complete use of my left arm within two years of shingles, eventually it shut down the left arm to the point where it was purple and cold. Within three years, I was meeting with surgeons to come up with plans for amputees.
I was taking 32 pills a day before I was 30 years old. My husband attended every single doctor's appointment with me for eight straight years.
Later on we found a doctor who took me off of all those medications in a safe way and who then could help me build a path forward. Ironically, that ended in me getting pregnant because some of the medications that we ended up taking every day, they don't unnecessarily help you regain your health.
Instead they add you more layers to the complexities of our health. I was able to go off every medication that I was left on through the stripping process and my body was able to fix the problem itself. The CRPS went into remission. I didn't even realize I was pregnant until I woke up one day and my arm was warmer.
It became pink again instead of purple, I was able to go back to physical therapy and get full use of my left arm back in those nine months.
The thing about autoimmune disease and remission and pregnancy is that it's usually a temporary release and then once you have your child, it does come back. And that's what happened to me.
I support a few groups on Facebook who deal with chronic pain, especially with nerve damage and shingles and so I had heard little stories.
A friend of mine and one of these support groups online reached out and said, "Hey, I want you to look up a drug called LDN."
LDN is literally the only prescription drug I take and helped me. LDN treats the cause, not the symptoms.
It's not necessarily about finding relief in the short term. It's about taking the chance that in the long term, this is going to make your body have better functioning overall.
It's just a completely different way of looking at treating a problem. I have been taking LDN for 25 months. I still don't know what my ideal dose is.
I have full use of my arm. It is a different shade. It's colder. It's a little bit more purple. There are days that I drop things with my hands. In the winter when it's colder and raining I can't lift my arm above my head, my shoulder freezes on and off. I do have my own laser, which is incredibly helpful to recirculate the blood.
LDN gives me everything. There's a psychological component when you're chronically ill and when you've been through the kind of pharmaceutical trial and error that I have, you become almost afraid of medication.
I find with LDN It's a completely different safety profile. It's one that I'm extremely comfortable with.
I know if I don't take LDN, the worst that's going to happen to me is that my body is already going to do what it was already doing. It's not going to send me into withdrawal. It's not going to make me unable to care for my child and my family. I've been on medications for the same exact condition that have caused brain damage, and I don't find that with LDN and I'm incredibly grateful.
I'm working and I am living. I would say that my quality of life now is rounding a good nine out of ten.
Listen to the video for the whole story