Reprinted with the kind permission of Health Rising
Please note that we’re at the very early stages of understanding how probiotics may help people with chronic fatigue syndrome (ME/CFS) or fibromyalgia. The trillions of bacteria present in the guts of the very heterogeneous ME/CFS and FM communities present much opportunity for variability. Warning: while Carol did very well taking large numbers of probiotics some people with ME/CFS/FM can be sensitive to even small amounts of probiotics.
By Carol Wolf
I didn’t have anything to lose. Or at least that’s the way I felt. I’d been sick for so very long.
So experimenting with probiotics was something I was willing to do. The experiment was a success and because of it I want to share what I did, and why, in hopes that others might benefit. If you want to jump directly to my protocol, click HERE
. If you want to learn how I reached this point, continue reading.
Autoimmune Diseases and ME/CFS
I was diagnosed with my first autoimmune disease at age 8. They thought I had rheumatoid arthritis. By age 12, Hashimoto’s thyroiditis and pre-diabetes were added to the diagnosis. As the years went by I struggled on and off with a variety of other illnesses. I had periods of good health and other times when I was completely bedridden.
Like many people with ME/CFS Carol’s many symptoms and conditions didn’t fit any one disease. In the end doctors settled on ME/CFS and/or atypical multiple sclerosis.
By the time I lost my job of 18 years due to my illness, I was still diagnosed with Hashimoto’s and diabetes, but also struggled with psoriasis, restless leg syndrome. depression, brain fog, irritable bowel syndrome, an intermittent inability to find words and form sentences, zero short term memory, balance problems, brain fog, lost time, low grade fevers, and on and on.
If I exercised I could find myself in bed for days and sometimes even weeks. I craved carbs a lot and was a good 20-pounds overweight. I had MRI evidence of mini strokes, brain lesions and a small brain tumor, blah, blah blah. I was on eight prescription drugs, two of those were antidepressants. That doesn’t count the psoriasis creams.
The diagnosis of rheumatoid arthritis no longer held up because blood tests were developed and I didn’t have the necessary RH factor to hold on to that label. The new labels were atypical MS and/or ME/Chronic Fatigue Syndrome depending on the doctor.
I always tried to keep a happy face throughout all of this. My mother was told when I received the RA diagnosis at age 8 not to coddle me and she didn’t. Because of that I learned to forge on. But those who know me well know how much I’ve struggled. I’d go for months feeling like I had the worse flu imaginable, but would drag myself out of bed using every ounce of my strength.
Other days, and sometimes into weeks, I just couldn’t move. It was everything I could do to keep working and often just to keep living. There were long years of good health and periods of the worse health imaginable, made harder to endure by the memory of what it was like to live a full life.
I had to be very careful. I learned what made the illness worse and I paced myself. All effort was spent on keeping that job at all costs. Often that meant I had no social life and would sleep from the minute work was over until I had to start again. During better times when I could stay awake, but not socialize, I’d research my disease, desperately looking for answers.
I lost that effort to keep my job about three years ago. This much sadness was too much sorrow. They did good by me though, and I am eternally grateful for the compassion some of those higher in the company had for me during that time. If you ever read this, thank you.
My job for those 18 years was as a reporter with Bloomberg News. I am a reporter because by nature I investigate everything and I have doggedly followed every aspect of ME/CFS and autoimmune research. My own investigations led me to believe that my illness was caused by a virus. I wrote a novel, which outlined my findings in an easy-to-read format.
Blasting the Gut
I have closely followed the work of Dr. Ian Lipkin from Columbia University, particularly after his involvement in regards to XMRV. Lipkin says individuals with ME/CFS show signs of infection and that he believes that virus is located in the gut.
By a fluke one night I watched a PBS special on a book called The Brain Maker by Dr. David Perlmutter, which talked about the gut’s role in our health. I bought the book, read it, and I felt like it was telling the story of my life.
Since Ian Lipkin at Columbia, thought the answer was in the gut, and Perlmutter was outlining so much evidence related to the gut’s role in our health, I started digging and researched probiotics. In particular, I looked for probiotics that seemed associated with my different problems i.e. which strains seemed to help with depression, which for craving carbs, etc.
I couldn’t find any one probiotic that contained all of the strains I wanted, so I just bought several different kinds and took them ALL!! In all, I started taking four high quality probiotics at one time and ate and drank fermented foods and drinks like komuchi and sauerkraut.
Mind you, at this point, my kids were grown and gone with lives of their own. I had lost my job of 18 years. I had only an intermittent social life. I didn’t have much to lose. My passion for horses, particularly my bond with my own horse, Sundance, is all that has kept me alive.
So taking four different probiotics at a time didn’t seem a big risk to me. Of course, no doctor would tell you to do this.
The way I figured it was if I have 100 trillion different microbes in my gut then I have to BLAST the gut with good microbes to change the balance between good and bad flora. So blast I did.
The results were amazing. I got better, and better, and better, and better. Everything about me changed. I could think again. I had energy. I started getting out of bed and going about my day like a little bird, with plenty of energy. One of the biggest surprises was my hair, which had always been dry and frizzy. It’s now silky and straight.
Gradually I got braver and started to exercise. I didn’t get sick after exercise. I quit craving carbs and I’ve lost 18 pounds. I gradually weaned myself off all my medications. I now only take thyroid medicine, when I remember. The hardest part of this whole thing was weaning myself off Zoloft, that was horrible.
NO DOCTOR will tell anyone to take the amount of probiotics I take, but I did it, never expecting anything like this CURE to happen for me. It’s a miracle. It’s an absolute miracle.
I’m not a doctor. I KNOW NOTHING. This is purely experimental on my part. If you chose to do this and it doesn’t work, or does work, don’t look to me as any source of expertise. I’m just a lady who tried to help herself and decided to share my story.
Not Created Equal
After much research I have learned that not all probiotics are created equal. To help those interested in how to pick a good probiotic I wrote this blog.
I am taking FOUR different high-quality probiotics plus some prebiotics a day with meals. By looking at the labels, it appears that I take about 300 billion CFUs of probiotics a day. This includes about 50 different strains give or take. I make sure one of my probiotics contains so-called prebiotics. Prebiotics they say help the gut create an environment that is hospitable to good gut flora. I also drink at least one kombuchi daily. I don’t keep taking the same brands of probiotics all the time. I change brands because I want variety.
Before I studied up on probiotics, I had taken Align, called “the probiotic most recommended by doctors”. It did NOTHING for me and gave me a stomach ache. Align uses just ONE strain of probiotic – Procter & Gamble’s proprietary strain.
Now that I’ve studied up on probiotics, I realized that taking just one strain of probiotic probably doesn’t provide the balance the gut needs to stay healthy and that’s why I ended up with a stomach ache. I guarantee you that the reason why it’s the most recommended probiotic has nothing to do with its usefulness and more to do with the fact that Procter & Gamble has the marketing budget equivalent to the GDP of many small countries. They market Align to doctors, who tell you to try it. Don’t waste your money.
When I eat too many carbohydrates it seems to set the gut out of whack again, so then I’ll take an extra probiotic dose. Through this method, I can eat within reason what I like and still stay healthy. However, I no longer crave carbs as I once did so controlling the carb intake is much easier than it used to be.
Depression and Probiotics
I recently had more proof that probiotics were indeed what has made the difference in my life. I recently quit taking them as religiously and I went into a horrible, horrible depression – remember I’m anti-depressant free at this point. I loaded up on probiotics again and the depression lifted in about three days.
I don’t know if this is permanent or not. What I do know is that I have become depressed again when I quit taking the probiotics regularly. When I loaded back up on probiotics, the depression went away. Much still needs to be studied on this subject. This was purely experimental on my part. No doctor will tell you to go off your antidepressants because of probiotics. What happened to me was that I felt mentally better than I had in as long as I can remember and I said to myself I wonder if I still need these antidepressants and gradually, gradually weaned myself off them.
I have no doubt drug companies will try and discredit the use of probiotics. I for one am off many prescription drugs. That can’t be good for their bottom lines. Either they will try and discredit them, or they will lobby to get the government to make probiotics prescription drugs. Just do your own research and don’t believe me or the drug companies without protecting yourself first.
Virus in the Gut?
My theory is that because of my lifetime illness, I may have to take these probiotics for a long time, maybe forever. Maybe there is a virus in the gut that sets the microbial balance out of whack and taking the probiotics keeps it in check.
A recent study showed evidence that people with ME/CFS experience changes in their gut flora during and after exercise – changes that did not occur in healthy individuals. I know that I can exercise again and I don’t end up in bed for a week when I do. I find this research very exciting considering what has happened to me.
This is entirely experimental on my part. I have NO IDEA. My absolute worse fear is that it will come back. Please don’t come back….
And no I don’t sell probiotics, nor am I associated with anything that sells or promotes anything. I’m just a formerly sick woman who stumbled upon – through dumb luck and research — a cure for what ailed her. Off to ride my horse…
These are the ones I’m on now. I don’t keep taking the same kind all the time. I change it up but I always want some with PRE-biotics as well.
One ME/CFS Patient’s Probiotic Purchasing Primer
Not all probiotics are created equal and picking the right ones can be all important to seeing changes in your health. Here are some things I learned from my reading to look for when making a purchase of quality probiotics:
Get Live Bacteria – Make sure there is some sort of guarantee that the microbes are live. Probiotics are meant to deliver live critters to your gut; dead critters don’t count. Some companies say “live at manufacturing” and don’t guarantee what will be there when the product gets to you. Others promise live microbes, while some ignore the issue altogether. If they ignore the issue, I’d be inclined to ignore the manufacturer and buy elsewhere. Read the fine print on the label.
Abundance is Important – The human body carries about 100 trillion microorganisms in its intestines, a number ten times greater than the total number of human cells in the body. So if you want to change your gut flora you need LOTS of “critters” – the more “CFU’s” the better. Look for probiotics that have billions and billions of units. Manufacturers generally referred to them as Colony Forming Units, or CFU. (A colony forming unit is a bacteria or yeast that is capable of living and reproducing to form a group of the same bacteria or yeasts.)
Diversity Works – The current state of science says that we have as many as 1000 different strains in our guts, so look for probiotics that have a large variety of strains. Again, read the label. The more strains the better. In advanced probiotics, we’ll talk about how different strains of bacteria affect different aspects of the body, and how bacteria become personalized, but for this primer, think the more strains the better.
Look for Mixtures that Contain Prebiotics – Prebiotics set the stage to allow microbial colonies to flourish.