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

Hello again!

Hi guys. I wanted to take a minute and jump on here to tell everyone that I’m okay. I have had quite a few emails in the last few weeks wondering how I am doing. Thank you for caring and writing to me. I love hearing from you.

I actually started working again and It’s taking up the majority of my energy. I have been dying to go back to work because not having money or purpose in life stinks hah. I was able to find a job as a real estate agent where I have VERY flexible hours. So most days I get up, go for a walk, do a few showings here and there, and then lay on the couch and listen to audio books or draw for the rest of the day.

Snuggle time on the couch with my cute dog Piper

What I’m Currently Taking

For having ME/CFS I consider myself to actually be doing pretty good. I spend most of my energy on work, but I am doing better at pacing, and have actually been able to enjoy the beautiful spring weather a little bit! The medicine I am taking is making a HUGE difference for me. Here is my current regimen specifically for ME/CFS symptoms:

  • Valycyclovir (antivirals)
  • Mestinon (helps the nerves and muscles work in sync)
  • Plaquenil (an immune modulator)
  • D Ribose (I take D Ribose when I do anything physical to keep me from crashing)
  • Mary Ruth’s Organics Multivitamins (I believe I had cell damage and this is helping repair it)
  • Collagen (People with EDS, I have hypermobility tend to stop making collagen so I take it just in case, also to repair cell damage)

Plaquenil

Can we talk about Plaquenil for a minute?

You guys, Plaquenil has changed my life! Plaquenil, also known as hydroxychloroquine, was originally created to treat malaria caused by mosquito bites. For some reason it is also an effective immune modulator in illness like lupus and rheumatoid arthritis. It is not certain how exactly it works, but it has been shown to reduce skin problems, swelling, and pain. I still pace, etc. but my quality of life has raised like 30% which is HUGE! (one of the reasons I feel I can work again).

I am not sure why it works for me, as we did a bunch of testing and I don’t have malaria or any other illness (that they can trace). It may just be working as an immune modulator. Honestly I don’t care how it works, I just care that it DOES work. I found something that’s helping, and that’s all that matters right now.

I highly encourage you to look into Plaquenil as treatment. It has been used for a long time and doctors tend to know more about it. The only down side, is if you take too much it could do some damage to your eyes. Your doctor should know about that, and know the appropriate amount for you to take so that it doesn’t.

Hope & Cortene

I have had a lot of emails that make me very sad, also. Many people who have written me have told me that Cortene is their only or last hope. Please don’t think this. I pray to God it isn’t true. I believe we have lots to be hopeful about, especially Ron Davis and his recent biomarker findings! I don’t know if it’s true or not but I have heard through the grapevine that some of the things he has been testing to calm the cells are showing some great results. I believe if anyone is going to find a cure it’s going to be Ron Davis. With a biomarker studies can move faster now.

I asked the nurse hired to administer the Cortene Trial about it’s current whereabouts. She said they are still analyzing the information. Still no answer on that. We might never hear anything if it wasn’t successful. (Drug companies don’t like to brag about their failures).

The proposed “cure” that doesn’t work: DCA

Something I tried that totally failed was a compound called DCA. You can read more about it here:

https://www.ncbi.nlm.nih.gov/pubmed/30220343

Yeah… it doesn’t work. Don’t waste your money. Try plaquenil instead! 🙂

That is all for now, until I have the energy to write again!

Love you all, know you are in my thoughts and prayers always.

7 Comments

  • Rochelle Collins

    Thanks so much for updating everyone on how you’re doing and what’s working for you. And, it’s so great to hear that you’re feeling better and able to work a bit again! Keep well

  • Kristina Henson

    Jackie,

    Thank you so much for your great blog, and congratulations on making it back to work. Can you tell me how long it took to feel a difference with Mestonin? I took it for 3 weeks and wasn’t feeling any different but was only taking in twice daily instead of the three times prescribed as I couldn’t remember to take it exactly on time (as I recall you had to wait 6 hours between doses).

    Secondly, are you having any side-effects with the Plaquenil?

    Thanks!
    Kristina

  • Velma

    Hi!

    Glad you are back. Cortene emailed a person at s4me and they said:


    Hi. I received this email last night from Cortene. I wanted to share it with you. Its given me some hope. I emailed a year ago to enquire about an update and am now on their mailing list. I posted on PR and was advised to put on here too, so i joined up to share:

    Dear Friends of Cortene, We are writing to let you know we have just completed our clinical trail in ME/CFS earlier this week. As you may already be aware, the trial was based upon our theory that a single receptor was up-regulated in the brains of ME/CFS patients. It proposed a novel therapeutic approach, in which a short exposure to a novel peptide (CT38) was intended to down-regulate the receptor, leading to symptom improvement. Our small (n=14) trial utilized 3 treatments of CT38, at 4 different dose-levels (no placebo). While we understand you are anxious to hear about our observations, it would be premature to share these until the data has been thoroughly reviewed and analyzed. We anticipate it will take 1-2 months to complete our analysis and write up our findings. That said, we have found the data encouraging and believe they support moving toward a randomized, double blind, placebo controlled trial. This will require significant funding and we are currently pursuing various channels to support continued development. We look forward to sharing more details soon and thank you for your continued support and patience. Regards, Michael”

    By what you write, does it mean that you have not gotten better? What does “encouraging” mean in your experience? I know you might not be able to answer everything but, can you at least give us a hint?

    Velma

  • M Cole

    Hello again Jackie , dont you worry sweetheart , Ron and his team are on it . My lovely daughter V, my constant friend , has M E . Pacing and meditation has helped her to have less pain and tiredness . Like you she works part time , which hurts sometimes and sometimes oft times . She is such a kind and beautiful person , you remind me of her. I’ll tell her about Plaquenil but we are in the UK and may not be able to get it . Keep smiling sweetheart ,all will be well

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