Friday, July 06, 2018

"New" ME/CFS Treatments to Consider

This blog post is long overdue! I have been collecting open tabs in my browser with ME/CFS treatments I hadn't heard of before that we might consider trying - it's getting kind of cumbersome, so I figure it is time to summarize these here so I can save and close the tabs!

To be clear, the reason for the quotation marks in the post title is that only one of these treatments is actually something new - the rest are just new-to-me. But I have been studying (and trying!) ME/CFS treatments for 15+ years now and thought I'd heard about everything out there, so this is very exciting to me to have found a few potential new avenues of treatment. My son and I function quite well compared to most ME/CFS patients, thanks to a long list of treatments that have helped us, but we are both still very limited compared to normal, healthy people, so I am always on the look-out for anything else that might help.

I haven't tried any of these myself yet (well, I am just beginning to try the first on this list), so I'm not saying these have worked for us (yet), but I wanted to make you aware that these additional options are out there so that you can talk to your doctor. Don't have a doctor to help treat your ME/CFS yet? Check out these tips and doctor lists to help you find a doctor: both a local primary care doctor who can help with the easier stuff and - if you can manage it - an ME/CFS expert to help with the lesser-known or more complicated treatments. As for treatments, start with this summary of the treatments that have worked best for my son and I over the years - things that have definitely helped us improve, be more active, and live more normal-ish lives. Many of these you can either try on your own or with your primary care doctor.

Now, onto the new-to-me treatments:

Berberine for Yeast Overgrowth & Brain Fog:
Yeast overgrowth indicated by thrush
One of the other parents in our group for parents with sick kids/teens/young adults shared this study of berberine, showing it to be an effective antifungal, when we were discussing treating yeast overgrowth. This has been a chronic problem for both my son and I, due in part to the immune dysfunction inherent in ME/CFS. In fact, yeast overgrowth is very, very common in ME/CFS and can make all of your symptoms much worse. It often causes severe fatigue, flu-like aches, sore throat and mouth, and sometimes very severe brain fog (as do any underlying infections). My son and I already do all of the things listed in this post on Treating Yeast Overgrowth, and it has worked well for us - we are both in pretty good shape now. However, to keep the yeast under control, we have to stick to a strict diet (which my son never does), take loads of probiotics and supplements, and we both take prescription antifungals every day (for years now). I would love to be able to reduce the dose of prescription antifungals or maybe even get off them all together, and it would be amazing not to have to constantly be so careful about diet.

I asked our ME/CFS specialist, Dr. Levine, about berberine for its antifungal properties (as the study explains), and she told me that it's sold as a supplement, so I could try it on my own. She also surprised me by saying that she does sometimes recommend it to patients but for those with severe brain fog... which makes me wonder if those patients have brain fog due to yeast overgrowth! So, I just started taking it this week and will let you know how it goes. It's supposed to lower blood sugar, so I am a bit concerned about that since mine is already low (as is common in ME/CFS). It's also supposed to lower cholesterol and triglycerides, which would be a bonus!



Mestinon
This is actually a very old medication, and one doctor who specializes in exercise intolerance has been using it for years for his patients, but word is just beginning to spread to other ME/CFS specialists and patients. This excellent article about using mestinon to treat ME/CFS exercise intolerance explains how Dr. David Systrom, a pulmonologist at Brigham & Young Hospital in Massachusetts pioneered its use for this purpose. Though he is not an ME/CFS specialist, per se, and is not necessarily familiar with other aspects of the disease, his research and clinical practice has focused on exercise intolerance in all its forms, so he has seen a LOT of ME/CFS patients in his clinic. His work has focused primarily on two underlying reasons for exercise intolerance, both of which are highly relevant to ME/CFS patients: dysautonomia (aka Orthostatic Intolerance) and decreased oxygen uptake during exercise (i.e. our cells can't process oxygen properly).

I would love to backpack again!
Dr. Systrom found that an old drug called Mestinon (pyridostigmine bromide) is effective in treating exercise intolerance in many patients, and he has prescribed it for hundreds of ME/CFS patients over the past several years. This medication promotes better nerve firing, increases blood (and oxygen) flow to the mitochondria in muscles, and increases blood volume - all really great things for ME/CFS patients! Word of Dr. Systrom's work has just begun to spread to the top ME/CFS specialists in the U.S. (who all work cooperatively and share information on treatments). When I asked Dr. Levine about Mestinon, she said she is trying it out on a select few patients and will let me know if it is successful. Since in Dr. Systrom's work, this medication has dramatically improved exercise tolerance in hundreds of ME/CFS patients, this is one I am really excited about. Although I have already greatly improved my (and my son's) exercise tolerance and reduced post-exertional crashes through other treatments, further expanding those limits would definitely be life-changing for us. Stay tuned!

Cortene and CT38:
This is the one treatment on this list that is truly something new. CT38 is a brand-new medication, created by a group of scientists from the biotechnology and drug development fields. It was initially developed to prevent muscle wasting, and it worked well in animal studies but was dropped when the company developing it got out of the field. The scientists who developed it started their own company and named it Cortene. They wanted to find a use for their new drug and discovered ME/CFS in their research. It seems like a perfect fit. This medication targets the stress response and works against inflammation - two huge problems in ME/CFS. It looks like a match made in heaven! They are currently conducting clinical trials for CT38 with ME/CFS patients through Dr. Bateman's clinic - she's one of the top ME/CFS doctors. This could be a major move forward - to date, there is not a single FDA-approved treatment for ME/CFS (though there are plenty of effective off-label treatments in use). This blog post explains all about Cortene's development, history, and what it does. Part 2 explains more of the science behind how it works and why it might help ME/CFS patients. And Part 3 describes the clinical trial, with more details of why they think this drug might work for us.

All great news! I was feeling as if we were plateaued these past several years - we've improved a lot but are still quite restricted (I still can't get through the day without a nap), and I thought we'd tried everything available that isn't crazy expensive. So, having new treatment possibilities to explore is very exciting. I will let you know what we try and what works for us.

Have you tried any of these treatments yet? I would love to hear about your experiences in the Comments section below. 

2 comments:

  1. I became a patient of Dr. Systrom in July 2014, and continued to see him even after I moved back to Oregon in November 2014. I've been on Mestinon since September 2014. I had reached the point with POTS where there honestly weren't any good options. Florinef was starting to cause kidney pain, and while it did help my blood pressure, it didn't seem to do anything for bradycardia while lying down and tachycardia while standing. Beta blockers either didn't work or stopped working after a short period of time. Midodrine didn't do the job either. Mestinon has really helped, in that I was 95-98% bedbound before I started that and ubiquinol. I was able to start physical therapy, and I've had times of being able to do daily walks. I want to be clear that for me it didn't get me back to hiking (the only time that has happened were during two brief periods of strict mold avoidance in a very good location, and even that didn't last). But it has significantly improved my quality of life.

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    1. Christina -

      Thank you so much for sharing your experiences with Mestinon. I'm glad to hear that it has brought such significant improvement to your life! That's great to hear. Sounds as if you have been through a lot of ups and downs - good for you for not giving up and continuing to search for something that would help. We have found that persistence (and patience!) is key with these illnesses - it seems that each patient is different and you have to find what works for YOU. Thanks so much for sharing your story. I hope some day you are able to hike again!

      Sue

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