• Cortene Study,  Encouraging Words,  Helpful ME/CFS tips,  ME/CFS Inspiration

    How to Treat a Chronically ill Person: What to do and not do

    Don’t leave me My physical body might be suffering but I still have the same soul. I am still the friend, lover, colleague, or family member I was before. I need you in my life, even if I can’t show it. I don’t expect you to treat me differently, in fact I don’t want you to. I just want to be myself. I might have to make some modifications to what we are able to do together, but please, don’t leave me alone. If you were in my life before I still want you in my life now, and I need you more than ever. Do: Stay connected Text me,…

  • Cortene Study,  Encouraging Words,  Helpful ME/CFS tips,  ME/CFS Inspiration

    Things that help: Antivirals

    When I first discovered that I have ME/CFS I started searching what might help me feel better. I believed I had some kind of virus in my system my body just couldn’t kick. And I knew I had chronic Epstein Barr. I had several tests over the years and some came out positive that I had the active form of the virus, and some came out negative and just showed I had the virus in the past. I had fever like bouts where I would be down for no reason with the aches and pains of a fever, and overwhelming fatigue and sleepiness. (Mono). Yet no temperature and no clear…

  • Cortene Study,  Encouraging Words,  Helpful ME/CFS tips,  ME/CFS Inspiration

    Things that help: Low-Dose Naltrexone,what it is and how to get it

    I first learned about Low-dose Naltrexone (LDN) when I was working on solving my thyroid issues. For a long time I believed my thyroid was the cause of all of all of my woes. Turns out it wasn’t, but I am still glad I found LDN. Even just a little bit of this drug can have a great effect on people suffering from ME/CFS. Naltrexone is an FDA approved medication used to block the receptors in the brain from opioids and heroine. By blocking the receptors Naltrexone helps reduce cravings helping addicts recover from addiction faster. It has also been shown to reduce the rush from addictive drugs allowing addicts…

  • Cortene Study,  Helpful ME/CFS tips,  ME/CFS Inspiration

    How to Qualify for Future Studies

    Hellllloooo there! How are you today? I hope you are doing alright! Anyone out there try D ribose or the amino acids? I am trying another amino acid blend with caffeine today seeing how I feel about it. I think it’s helped quite a lot. I am just trying not to overdo it as is easy to do when you have fake energy! I’ll keep you updated on that. I wanted to take a quick break from my “Things that help me” series and address a question I get frequently. How to apply to apply for future Cortene studies. How to Qualify for Future Studies Before we dive in, I…

  • Cortene Study

    Cortene Trial Update!

        Hello ME/CFS friends! I have received so many kind and encouraging comments and emails about the Cortene trial. Thank you all so much for your support! I have been dying to write here and tell you all how I am doing, but alas I am still not allowed. I’m not sure when or if I will be allowed to fully divulge the details of my results. It’s disappointing and frustrating, I know. The reason why I am not allowed to talk about it is there is potential for such a huge array of responses to the medication. They don’t have anyone who gets the medicine to have a…

  • Cortene Study

    It’s Here! Cortene Trial: Infusions

    Hey everybody! I hope you are well. Some good news for us! The Bateman Horne Center is moving forward with CT38 infusions, and my first infusion is TOMORROW! EEK! I am equal parts excited and terrified. It is going to be a three hour subcutaneous infusion. My second infusion will be on Wednesday of this week. As you remember they changed the study so all patients will be getting the low dose. I am expecting to have some mild side effects, but nothing serious. Fingers crossed! The good news: The study is moving forward and we are closer to knowing whether or not CT38 is a cure for ME. The…

  • Cortene Study

    Cortene Trial: Postponed

    Hey there, friends! I have some bad news today. Unfortunately, the Cortene trial has been postponed. Yep. I was told they are changing something with the study and need to get approval from the FDA and the IRB once again before they can move forward. My guess is there was some kind of effect on the first patients who received the medicine and they are re-calibrating. I have been told to continue my protocol, doing the daily symptoms survey and the tests for cognitive function. My exercise stress test was canceled, which I feel a little bit relieved about. They are not sure when they will be able to pick…

  • Cortene Study

    Cortene Trial Visit 1 & About the Cortene Trial

    VISIT 1 Hey friends! I hope you are doing well today. Big news! I officially had my first appointment for the Cortene Trial yesterday, 9-6-18! It went great and I expect to have my second appointment in a couple of weeks. I am thrilled to finally get going on the trial as I have been waiting for a couple of months now. Let’s do this thang! The visit was pretty standard stuff. I first talked to a PA first who did a bunch of testing with me basically to rule out anything other potential cause for my fatigue besides ME/CFS.  She also did a bunch of testing to get my baseline…

  • Cortene Study

    My Story/ Cortene Trial

    Hello friends! My name is Jackie and I have ME. I was recently selected to participate in the Cortene or CT38 trial at the Bateman Horne Center in Salt Lake City, Utah. This drug is expected to be curative. I wanted to blog my experience for those who are interested in a behind the scenes look at the trial. In this post I want to give an overview of my story and my symptoms so you can compare how Cortene might help you (or not help you) if your case is similar to mine. I realize everyone is different and if our stories don’t line up I hope you find…