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Knocking Down the Mountain – Facing the Shadow and Tackling It, #63
Julie Rehmeyer was so sick she sometimes couldn’t turn over in bed. The top specialists in the world were powerless to help, and scientific research on her disease, Chronic Fatigue Syndrome, was at a near standstill. Having learned from a total stranger that mold may be the culprit, she took a leap of faith, drove into the desert to avoid mold completely and began her journey to wellness. An incredible story that will give us all hope in our own journey to wellness.
By avoiding mold completely, Julie will be at almost 100%. But as you can imagine, it is difficult to avoid mold all the time. There seems to be genetic susceptibility to mold. But is also a culmination of things: living in old travel trailers, was pushing her body really hard in the process of building her house where there probably was exposure to mold, stress due to her husband’s illness and other factors. Yet, her genetic susceptibility made it worse.
Once you get sick, your susceptibility for it goes up significantly.
Chronic Fatigue Syndrome- What Is It And How Do You Get Diagnosed?
The name doesn’t capture the severity of the illness.
One of the criteria is exercise intolerance. Being chronically fatigued the day after working out. Important to rest up and relax. If it doesn’t go away, there may be CFS present. If you can’t think straight, your heart rate goes up when you stand up, and high blood pressure, these could be symptoms.
What do you do if you have these symptoms?
First of all, don’t overdo it. Most doctors won’t suggest that.
You have to learn to stop as soon as you feel tired, and not push through. If you learn to pace yourself when you have relatively mild symptoms, you have a better chance of recovering.
Go to your doctor, recognize that most doctors know almost nothing about this disease. So you have to be cautious about what most practitioners have to say about it.
Resources for ME/Chronic Fatigue Syndrome
The greatest wisdom is in the patient community. You need to be careful and vet everything. What works for someone else may not necessarily work for you. Pay attention to what you read, pay attention to your body and experiment carefully.
Some suggested resources:
Paradigmchange.me which offers information about the role of mold toxins in chronic illness.
Phoenix Rising Forum– online community for ME/Chronic Fatigue Syndrome
Follow Julie Rehmeyer on Facebook– you can learn from other people’s experiences and comments.
Facebook- find groups, more informal setting.
Mold- What Should We Know And What To Avoid
Not all molds are dangerous. Cheese is made out of mold, and clearly not dangerous to our well-being the way CFS is.
Mold is a stand in word. Mold grows on drywall and insulation. Mold produces toxins and spores that end up in the air. There’s bacterial and compounds in air and water damaged buildings. There is mold in all of that, that creates a reaction in people, but there isn’t enough information to pin point which one created her illness.
We know that if there’s mold in your house, you have to get rid of it.
Unfortunately, you can’t say there’s no mold in your house if you can’t see it so that’s not what’s making you sick.
You’ll need to do a big experiment to get rid of mold, to see if over time that is what was affecting you. The only way you’re going to do this is if you’re really ill and nothing else makes sense.
There are relatively standard tests your doctor can run to determine if mold is an issue for you.
Julie’s Book: Through The Shadowlands
When she got really sick, it became urgent to her that she needed to write a book about Chronic Fatigue Syndrome with her experience and other people’s experience. In the process of eliminating mold, all her experience led to a book that became a personal memoir.
It’s a book that even if you don’t have CFS will be a good read. Along the lines of Eat, Pray, Love…it’s a fun beach read. Aside from being a great story, has a lot of information and ends in a love story.
About Julie Rehmeyer:
Julie Rehmeyer is an award-winning math and science journalist and contributing editor at Discover magazine. Her work has appeared in the New York Times, the Washington Post, Discover, Science News, Aeon, Wired, High Country News and many other publications.
In 1999, she began to show the symptoms of chronic fatigue syndrome (ME/CFS), and by 2011, she was so sick that she sometimes couldn’t even turn over in bed. Determined to regain her health, she embarked on a journey that challenged her preconceptions about science, as she discovered shocking problems with our system of medical research. Her quest for wellness took her far from medical orthodoxy—and to a life that was more satisfying than she could have imagined. She chronicles her experience in Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand.