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 bad news: I am not going to be able to talk about my results. I know. Booo right? I have been told that talking about my results can effect the ability of future patients to get infusions. I would NEVER want to cause anyone to not get the medicine, even if it doesn’t work for me. So unfortunately I have to be just a little more vague about my results than I wanted to be. Please forgive me!

I hope that you will be kind enough to send prayers, good vibes, or whatever you believe my way for this week. This medicine working can mean so much for our community.

As always, I send all my hugs and love your way!

36 Comments

  • Christina Reed

    Hi Jackie, totally praying for you! I read your post on Facebook which is really amazing because I hardly ever go any further then that. Then to write and leave a message is even a ……( can’t think of a word)…… but I’m so nervous… 1. Excited for you that your doing this ….2. Praying that it works. ( no pressure) right! …. ….
    my name is Christina Reed I’m 56 I think like a 29 -30 yr old.fell like a 100 yr old. I have a great awesome husband who is 69 that does everything, 3 boys they are all married and I have 10 grandkids one beat me to heaven. We all belong to the church of Jesus Christ of Later Day Saints. I can’t wait to here how your day goes tomorrow. Oh! Where do you live? And how do blogs work? I have thought about doing one too but don’t know how to start one or how to get back to yours or anything. I do have a Facebook page and Twitter now.

  • Mark C

    Thanks for being a heroic volunteer. Only by real clinical trials will we find cures, and might take more than one trail. More superheroes like you are needed!

  • Lisa

    Thanks so much for your update! I’m a Danish ME patient eagerly awaiting the results of the trial. So good to hear it’s back on track. I send you my very best wishes for success and good health. And don’t feel bad about not being able to talk about your results, that’s how it always is with trials like this, I’m sure. Good luck!!!

  • Hanne

    I just sumbled upon your blog looking for how the cortene trails are getting on. So good to hear the process is going again. And im excited for you to get to try this. Sending tons of good vibes your way and hope its going well for you!!
    Too bad you cant discus it, but its understandable.
    Fingers crossed!

  • Jens Jensen

    This is exciting stuff Jackie! I anxiously look forward to your future posts. I’ll be parsing them for clues on your treatment response. I’m hoping that the posts become more frequent, and the tone remains as positive and hopeful.

    I’ve been researching this for 15 years for my wife. The Cortene trail is a big deal. You are pioneer, and deserve all the kudos we can send.

    • Jackie

      Hi Jense, I am hoping to pick up posting more. I have a lot to say for sure. It’s been super hard not to say anything about the study. I have wanted to talk about it so bad! As soon as I can I will. Please send your wife my best wishes. I know we are all praying Cortene is the answer! -Jackie

    • Jackie

      If they decide to publish the findings of the trial it will probably be in the fall. I think all of the patients will be finishing up their trials in the spring/ summertime.

      Jackie

  • JudyBeauty

    I just found your blog. I hope you are doing well and this new therapy works. It would be a Christmas miracle. I have been sick since 1986 after a bad flu virus.

    Praying for you

    Judy B.

    • Jackie

      Hi Judy. Wow, You have been sick as long as I have been alive! I am stunned and heartbroken to read this. I am still not allowed to talk about my results from the study but I wish you all the best. Praying for you too! -Jackie

  • Dan

    Hi Jackie I was curious how things were going. Any noticeable positive changes? Do u know when the overall study results will be available to the public?

    Thanks Dan [I have struggled with this condition CFS For over 38 years] I have been using some quality brain entrainment programs from Canada plus quercitin with bromelain and been getting very encouraging result in case this isn’t working out for u as u would’ve hoped.

    • Jackie

      Hey there Dan. I am so sorry to hear you have been suffering for such a long time. I am not allowed to talk about my results from the study but I want you to know I feel your pain and I will be praying/sending positive vibes your direction. Much love- Jackie

  • Clint Benton

    Hi Katie, I was bed bound with ME for 5 years and have more or less recovered now. Wondered if you’d like to chat to share stories? I live in New Orleans, though at the moment I’m travelling in Costa Rica. I hope you are well. Yours, Clint.

    • Jackie

      Hey there Susan, as far as I know they are still working on phase one, and if they feel like it’s successful they will move on to phase two. Phase one won’t be done they say until summertime. Is there something you know that I don’t know? -Jackie

  • Yannick

    Thanks for keeping us updated!

    It’s really hard to get info on the current state of the trial, I guess because it’s all under nondisclosure..
    Expected a Health Rising article on the end of the trial by now, haha.

    I hope there weren’t any more problems with the study and that the drug worked/works for you!

    • Jackie

      Thanks Yannick! It’s going to be a while before everyone will be finished with the trial! I have been told for sure it will be done in the summer. Maybe spring at the earliest. Take care! -Jackie

    • Jackie

      If they decide it had positive enough results to publish it will probably be in the fall of this year. After all the patients have been through the treatment. all the best! – Jackie

  • ManShadow

    Hello,

    I just read on Health Rising that the trial had some hiccups and was delayed. Did this affect your trial?

    All the best.

    • Jackie

      Hello mysterious “Man Shadow” haha. It delayed the trial for about a month. I will be finishing up my time in the trial in a couple of days! I believe by summertime everyone who will be having the treatment will have had it. Thanks for your question! Take care!

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