Thanks to Carol for allowing Health Rising to post her startling recovery story. 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. (I added the video and resources at the bottom.)
Carol’s Story
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.
Carol blasted her gut with as many bacteria as she could, er…stomach.
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.
Carol’s reading suggested that taking a variety of gut bacteria was important
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…
Carol’s Protocol
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.
- Raw Probiotics for Women
- Complete Probiotic by Mercola
- Perfect Probiotics
- Multidophilus 24, Super 30 bil Solaray
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.
Resources
- ME/CFS/FM Gut Recovery Stories On Health Rising
- Health Rising’s Gut Resource Section – including more on Dr. Perlmutter
- Gut Video’s on Health Rising including more from Dr. Perlmutter: Overviews and Research / Treatment
- Dr. Mercola on Dr. Perlmutter – nice overview of Dr. Perlmutter’s work
Dr. Perlmutter on the Gut
Wow, this is super news for you! Did you have GI problems during your illness? How long did it take before you noticed you were doing better? How long has it been since you began this probiotic protocol? Bless you…
I had intermittent IBS. I would have it for a while and it would go away for a while. In general I would not say gut issues were a general concern. I started noticing results in about six weeks I would guess
Hi Carole i hope your health is still holding up. Can i ask did you feel worse in the first few weeks before you made gains when starting on such a high dose? I did great on Prescript Assist before they changed formula and it was recommended we don’t use it. Gone downhill badly ever since. Trying Equilibrium at the moment.
It’s ironic that you mock the probiotic Align. Yes, it’s low dose, and yes it’s a single strain, but it’s one of THE only probiotic strains shown to benefit ME/CFS.
Here’s the study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3744517/
Taking massive doses of indiscriminate strains may have helped you, but they’d be a disaster for anyone with histamine or ammonia issues.
This story is amazing. I started with Probiotics not knowing what to take many months ago. Also noticed continued improvement but also changed my diet. not thought of Sauerkraut. I am taking as of now Pro -5, VSL #3 when I have a flare. Schiff Probiotics 6 a day. Will also try what Carol has suggested.
Also a dramatic improvement when I went into see Dr. he put me on a Vaginal tiny bit of Estracin. 1% Vagnally. I sleep better and Brain fog has improved.
Can I buy book by Dr. Purlmutter?
Thank you Carol this was right on in my case also. I don’t have all the info you do yet-but getting there.
Firstly, I took Align and lost all of the power in my
Muscles which I got back on stopping. I also had insomnia which I only get when I eat yogurts regulary.
Interestingly, I’ve been taking a lot of a yoghurt called phage in the UK and I have had a really bad arm and hand weakness this year which is miraculously getting better. My legs are getting weaker though but I think I’ve used them.
But I’ve also noticed and I’ve read research on it is and I have brain fog which they say is possible from Pre and probiotics. I’ll be interested to hear if anyone else who has gotten brain fog from this type of thing please. Kefir just one t-spoon can put me to sleep for days
This story reminds me of Jordan Rubin’s who founded Garden of Life supplements. He was very ill and wasting away and took huge amounts of probiotics (of course his own “proprietary” blend) to recover. Though I think his story is part marketing and part truth it has always been an attractive treatment option to me and Carol’s story confirms it can work for some people. I have also read about people who take VSL#3 probiotic (a high potency, “prescription” probiotic) who were taking only one or two and it did nothing but once they took the recommended 4-6/day symptoms started to improve, so dose can matter.
I wonder if Carol can share some of the other brands she has used? And how much she spends a month on probiotics? At sometimes $1 a capsule or more she must be spending hundred’s a month?
One more note is that with one or two probiotics I have noticed the opposite effect in terms of depression, that I actually get an acute sort of depression that went away once I stopped the probiotic. I’m not sure what caused it and if it would have gone away, I didn’t feel like trying to push through it.
Finally if people have never taken a probiotic before I agree to start very slow with small amounts. I got a big worsening of symptoms a day or two after I first started probiotics years ago, that said it was short lived and I haven’t had a problem since.
Probiotics are powerful I now wonder if the dizziness I experienced while I was taking some probiotics caused it. That caused me quite a bit of trouble for several months.
I also realized that drinking Kombucha at night was causing me to wake up during the middle of the night – probably because of the small amount of alcohol present.
I had to cut back on my home-made kefir because after the energy boost it brought I got fluey. Once I started up slowly again, though, I did fine.
Following Carol’s story I am going to start up on probiotics again – slowly and if I can handle them I am going to keep working my way up and up.
it’s possible that your reaction was a herx reaction. so starting out “low and slow’is a good idea.
My CFS/ME on-set came after 2 back to back bouts of diverticulitis followed by c-diff from being on the Cipro so long. 2 questions:
1. Is there evidence of c-diff triggering CFS/ME?
2. How might Ubiquinol interact with Carol’s
probiotic protocol?
Any information is very much appreciated.
There have been no published studies, and I would not expect such. There is a class of conditions called “Post Infection Fatigue” and because the fatigue continued from a known condition, it is often not classed as CFS by many MDs (CFS diagnostics require no known cause).
On the plus side, with the microbiome dysfunction model — it is very viable (as is flu, inoculations, EBV, HIV6,Q Fever etc as a triggering agent). The C. Diff. would cause a dysfunction (i.e. encourage evil bacteria) that will not always go away after.
Ubiquinol may or may not interact with probiotics — there is no research.
Unfortunately the tiniest dose of any probiotic or anything fermented puts me out for days. Severe fatigue, malaise, nausea, low grade fever, and weird neurological symptoms. IBS also gets worse. I’m scared to death of them. Does anyone get similar reactions? I ordered a non Histamine releasing combo which don’t produce D-Lactate, thinking of maybe trying that formula.
Some people do…You are not alone. Perhaps it is the histamine…Have you checked out mast cell activation syndrome or tried anti-histamines? We have something coming up on that.
Are those people using the VSL sachets or capsules?
Jacob, I had the exact same problem. I am now able to take probiotics and I’m okay with the strains I take. I am still careful of which I take though. The problem was I had SIBO and a leaky gut. Once I cured the SIBO and healed the leaky gut, I was able to take them. Good luck to you. I hope this helps.
Jacob, I’ve heard or read that people with SIBO do worse taking fermented foods like Kombuchi and sauerkraut. You might want to investigate that further. I believe there is a special diet for SIBO. I don’t know how successful it is.
Garden of Life is one of the probiotics I have experimented with. I like that brand. I was taking the women’s version. I think I spend about $75 a month on probiotics. That’s about half of what I was spending on the eight prescription drugs I was taking. As far as the reverse with the depression, if probiotics actually do affect brain function that it stands to reason it could go the other way too. Very interesting. It helped my depression but everyone has different gut issues and therefore probiotics could affect people in many different ways. For me, if I notice signs of depression I up my dosage and the depression lefts. I never had stomache pains except when I went on Align which is a single strain probiotic
Jordan Rubin did not start producing his own products till well beyond his recovery. I use his Primal Defence ultra probiotic formula, stay away from foods that I’m sensitive to and my IB is kept at bay. I also use his Vitamin Code whole food vitamins that also contain digestive enzymes and probiotics. I do want to add here, that I do not have a stake in his company. I’ve had FMS for 21 years and started using some of his products about 6 years ago and found them extremely helpful.
Jordan Rubin took the probiotic Nature’s Biotics (now named Body Biotics) to aid with his healing. After he had his health back he put together his company to sell health products. He purchased the right to put Body Biotics in his new probiotic product. Later, when he could no longer buy the Body Biotics, he used other probiotic bacteria in his formula. I do believe the Body Biotics was critical to his healing.
Hi o got brain fog from probiotics and insomnia
Interesting. The article suggests the amount is very high but I just read one sachet of vsl is 450 billion cfu where Carol says she takes 300 billion, so these amounts are taken by people. Obviously the difference is by Carol taking a combination she is taking a lot more strains than VSL which is 8 strains compared to the 50 strains she says are her personalised combination.
Never heard of vsl until responses to this article. As far as probiotics go I take a lot. I’ll look into vsl
It’s all in the gut and intestines!
Me for years:
CFS
Neuro Lyme
Fibro
Diverticulitius
Etc.
I have had a similar experience with pro and prebiotics!
I have a whole protocol myself that has helped me get back to at least part time functioning. Read Dr. Kelly Brogans blog and Dr. Gonzalas
Before bed PM – 2 Dr. Ohhiras Professtional Formula(Amazon) – healthy bowel movements in the morning! Also notice fermented culture besides probiotics! God sent for me!
Rising: one Chlorella with coffee(Protocol again Amazon) – intestinal deodorant every morning
After coffee probiotic restorative probiotic: 1 Florastor – love my good yeasts SBoulardii lyo!
Mid Morning – time for more scrubbing! Smoothie with greens can be any of the following with Kimbuchi: kale, collards, spinach etc.
This has transformed my life works like a charm? I don’t take anything except Amour Thyroid with T3. Not even an aspirin! I have replaced all that over the counter stuff with herbal medicine protocols.
Congratulations Chris – and thanks for sharing. Anyone who has done well on probiotics please give your formula and I will find a place to list them.
I am allergic to the protein in dairy. Can anyone suggest effective probiotics without this?
on the few occasions i have tried probiotics i have experienced frightening side effects, namely being woken from sleep in the early hours of the morning by my heart racing very fast for quite some time, so much so it felt i would lose consciousness. once the heartbeats eventually calmed down i felt hyper/anxious and shaky. i am now too afraid to try this protocol again.
They are surprisingly powerful. I think this means powerful in a good way and sometimes a bad way. Your experience suggests to me that your gut flora is a big issue and if you could find the right ones it would make a real difference! The question is what are the right ones?
Wonderful to read this recovery story. I’m with Cort on this, I plan to start this protocol taking it low and slow and building up to the amount Carol took. I’d like a list of exactly ‘which’ ones to purchase? I’m in the UK and not always able to get the same as the States. Very encouraging though.
You might research histamine intolerance. If your body can’t metabolize histamine, perhaps insufficient DAO, it can result in a reaction that might look like what you’ve described. Some probiotics release histamine.
My comment was meant for Susan who had a hyper aroused anxiety reaction to probiotics.
Cort, can you do something on histamine intolerance?
I was just thinking about that actually. 🙂
DAO enzyme and the DAO SNP brekage on the 23andme genetic test: For those with DAO SNP compromise, some SNP consultants have advised backing off fermented foods due to intolerance. Swanson and others sell a DAO enzyme supplement, but it is better to put that funding on a multi-strain probiotic like Dr. Steven Langer’s (also Swanson) if priorities dictate.
Cort, please do an in-depth article on histamine/MAST cell DNA-related issues using some of the data from 23andme and Dr. Ben Lynch’s site Seeking Health, if possible. His work and custom supplement line address lots of these issues. A product called Restore4Life is also a very natural product that allows the “leaky” gut lining to repair itself.
Much ME/NEID originated when GMOs were introduced in the 1980’s; no coincidence; Glyphosate/Roundup in all foods and supplements, which is almost all of them, causes the fatty acid protective coating of gut lining cells to dissolve.
Follow the Monsanto money trail with the ME-Glyphosate relationship. Dr. Stephanie Seneff, head of Artificial Intelligence at MIT, gave a brilliant commonsense lecture on this at Mike Muetzel’s Autism huge online free presentation this week. Probably can also find her on YouTube. She threatened Monsanto so much it got her on Quackwatch, which many of us consider an honor, considering the big money interests behind Quackwatch.
This has happened to me as well. I wonder why some have such a violent reaction? I thought I’d need to go to the emergency room the last time I took them. I was left with diarrhea, palpitations, weakness, shaken, pounding heart. I just took one pill!!!!
So appreciate the article and so glad that she has recovered after a long and terrible experience. Hope you remain well. Think I’ll try doing some microbes.
I understand Carol had had health problems for most of her life, but I am mostly interested in how long Carol had been too sick to work before starting this protocol, and how long she was on the protocol before noticing a difference. Reading about health problems in childhood and then an 18 year career doesn’t give me much to work with in comparing her situation to mine or those of my friends whose stories I know better. I first got sick at 27, and by 35 was house-bound when not bed-bound. It’s been another 20 since then. I would like very much to know more.
Hi, this is Carol, Hard questions to answer because the illness would be so variable from day to day. A big help for my career is that I worked from home for 15 years. After getting transferred and having to work from an office is when the real issues started work wise. I could not handle all day in the office and the commute. My office had no where at all to rest during the day. No even offices. Open concept. People everywhere. Toward the end of my career I might be off work three or four days a week sleeping non stop and barely able to feed myself. The next week I might work the whole week and the week after that be off a day and the week after that never make it to work at all. Obviously not a situation that was good for the employer or me. After leaving the company I worked another three years as a freelancer from home and was functional that way before discovering the probiotics. I was bedridden for a time in the 90s but recovered enough to get back to work from antivirals back then. It might have been a month to six weeks that I started noticing the difference.
Perfect timing for this article as I am considering Fecal Microbial Transplants, which would plant “tons” of bacteria from my wife, who is healthy, in my gut.
Reading about FMT after it was recommended to me by a couple of friends with ME/CFS who have benefited from it, it seems like it does help with gut problems, but rarely cures ME/CFS. So I don’t expect to repeat Carol’s awesome recovery, but I hope to get some benefit as my gut can definitely use some help.
I might try Carol’s approach first, but will wait with that and FMT after my appointment with the Open Medicine Institute this month, where they might recommend a treatment based on the results of an actual Phase 2 study.
Thank you for this well-written, positive report.
One word about FMT. My gut specialist told me it’s very important to use stool from the same gender as yourself. I am no expert on the subject, but have been considering one myself. I was also told its better if the person is related to you. This information may or may not be useful or true for you I am just passing it along.
Garden of Life is one of the probiotics I have experimented with. I like that brand. I was taking the women’s version. I think I spend about $75 a month on probiotics. That’s about half of what I was spending on the eight prescription drugs I was taking. As far as the reverse with the depression, if probiotics actually do affect brain function that it stands to reason it could go the other way too. Very interesting. It helped my depression but everyone has different gut issues and therefore probiotics could affect people in many different ways. For me, if I notice signs of depression I up my dosage and the depression lefts. I never had stomache pains except when I went on Align which is a single strain probiotic
Carol, would you be able to recommend substitutes please for both “Perfect Probiotics” &
“Multidophilus 24, Super 30 bil Solaray”. These I cannot locate here in the UK so want to find something similar (the first two you recommend in your protocol I have just located). So pleased for you.
Hi Karin,
See my comments below about Ken’s information, he has a lot of details on probiotics in Europe that you cannnot get here. The basic idea is viability, variety, and quantity. Mutaflor has been very good to Ken and it helped my gut issues quickly but you can’t get it in the US. If it wasn’t so expensive to get from Canada, I would be loading up on it. Ken is very focused into specific strains also and finds pubmed research to support his findings.
What I can do is offer you this primer I wrote to help you pick from the probiotics available to you. Hope this helps. http://www.lalupablog.com/#!Probiotics-A-Purchasing-Primer/c1kw6/563e60f60cf275e9c59c8347
I don’t really take the same ones. I’d just use the primer at the bottom and pick some that are high quality from what you have available. It’s not a science by any means. I’m just winging it!!
🙂
Carol, can you identify specifically which products include the prebiotics? I am not sure what exactly the difference is. I like the Garden of Life products and they are available here – do any of those include the prebiotics? How about Metagenics and other professional brands? Thanks.
I have to admit I really don’t know much about all probiotics. I just tend to read the labels and also do a search on Amazon for prebiotics. I just kind of stumble through life in general. Lol
I would suggest reviewing Ken Lassesen’s articles on Health Rising and see his blog at cfsremission.wordpress.com. His approach uses both herbal antibiotics and probiotics in a sequential manner so you try to determine whether certain ones work for you.
He does a lot of research on probiotics so it is a good source of information.
I would avoid minocycline as it is at had a very negative effect on me.
I was in the process of increasing the amount of the probiotics I’m taking – trying to find a threshold where I feel a difference
Yes, indeed. You can find Ken’s blogs on Health Rising here – http://www.cortjohnson.org/forums/resources/gut-blogs-on-health-rising.290/
follow please.
Thanks for the article!
Carol,
How long did it take for you to feel good?
Hard to say because I wasn’t expecting anything to work but my guesstimate would be a month to six weeks
Hi,It’s been my experience too, that you can get a lot better in the course of a few weeks. I’ve had Fibro & CFS ME for at least 10 years, the last 2-3 severely, and for a long time I was bedridden 19 hours a day.
I had some stool and hair samples analyzed by a lab, then by a functional/holistic medicine practitioner. My gut has dysbiosis: there were hardly any good bacteria, while infested with bad bacteria and candida albicans. I also have environmental toxins such as mercury, led, arsenic, ++.
I started out strenghtening my liver with herbs, then taking anti-fungal herbs and pre and pro biotics, while on the candida diet for 11 weeks. Each morning I detox’ed with water, physillum husk, bentonite and charcoal.
I had serious die-off symptoms from the candida, and felt shitty, especially at first, but upon quitting the herbs the symptoms gradually cleared off, and I was born again a new person!
I don’t have to stay in bed all day any more, and my immense brain fog has vastly improved.
I need more time and several rounds of this protocol to get well, as the Candida can transform into a highly pathogenic state, and might be very hard to get rid of. To kill this form of Candida one needs to use biofilm destroying herbs like caprylic acid, and a herb called gymnema sylvestre in addition to other anti-fungal herbs. I have been recomended by a health food store owner, who was herself bedridden once, to rotate the herbs every few days over the course of a long period of time, to kill Candida and bad bacteria. The rotation of herbs is to make sure the Candida doesn’t become resistant.
Since using this protocol, I’ve come across a natural therapist who uses homeopathy to cure CFS, apparently without the die-off symptoms that you get from herbs. According to her, CFS is caused not just by environmental toxins and Candida, but also by the host being allergic to the Candida.
Another thing that might be important is to get rid of parasites!! I did this early on, and it made a huge difference. My daughter found a worm in her stool one day, and since removing them, all of us has felt better, especially the mood swings are gone!!! Now I’m clearing out microscopic parasaites from the blood and intestines using anti-parasitic herbs. I will also be de-worming regularly from now on!
I’ve done a lot of research online, and have found a lot of useful information. You’ll be able to google keywords.
Some important anti fungals(and anti-bad-bacteria) and immune enhancing herbs: oregano oil, olive leaf extract, caprylic acid, gymnema sylvestre, Thorne sf722(very strong, be careful! start out with single drops), cat’s claw, uva ursi, saccomyches boulardii. Biocidin, artemisinin and fermented garlic.
It might be important to start out carefully, and then gradually step up the dosage, just in case you have strong reactions to it.
Like Carol, I’ve taken fermented foods(I ferment some myself) and i rotate the probiotics, and make sure to take as many different types as possible.
The best of health to you all.
Thanks Hilde and good luck!
WOW!! Carol this is so exciting and important, and many congratulations to you for your success. This further adds to what is becoming a mountain of evidence that ME/CFS is rooted in the gut, at least for many patients. My guess is that the solution for many will turn out to be daily, oral FMT capsules, which compared to even the most powerful probiotic capsules are like a nuclear bomb compared to a hand grenade. The problem with FMT implants is that they are not given on a daily basis. Based on the recent Shukla study, ME/CFS is looking more and more like a chronic imbalance or overgrowth of something(s) in the gut that the body cannot control, and that is exacerbated by exercise, stress, and even food. Even if traditional FMT “normalizes” the microbiome temporarily, any benefits from it are likely to be short-lived, just like diabetes or asthma patients will backslide if their medication is stopped. FMT capsules are already available to some C Diff patients, and clinical trials with ME/CFS patients are desperately needed.
For those who don’t know – I didn’t – FMT is fecal microbiome transplant. I didn’t know they had capsules…
I imagine that given long enough the gut flora would normalize?
Sorry, I should have spelled out the acronym. Anyway, the research suggests that the capsules are every bit as effective as the implants.
The FMT capsules are administered orally or rectally?
Orally. Check out https://www.washingtonpost.com/news/speaking-of-science/wp/2014/10/11/good-news-you-can-take-your-fecal-transplants-orally/
I read about fecal transplants in articles by a UK doc who specializes in ME/CFS (funny, I can’t remember her name, haha). My youngest daughter had just had a baby boy and was living with me, so I thought I would give it a try. It had been 25 years plus for me at that point and I have always been open to strange methods of healing. My grandson was young when I started, but was !00% organic (no vaccines, or antibiotics), so I gave it a try. I also was not able to follow her protocol, too complicated, so just took about a teaspoon of his stool out of his diaper, mixed well with water to equal not more than a quarter of a cup and inserted it with a baby ear bulb. Even in those early days it was working. But at the time I had a steady supply. Later, when he was older, one treatment would last for a couple of weeks, and I mean there was a huge difference in my gut activity. The problem, which I believe Lassessen (sp?) had tried it and said the same, was that the disbiosis would return after a bit of time. I’m not sure whether or not it helped my other symptoms to tell the truth. But since I have read an article by Dr. Karen Becker, who writes for Mercola on pets on fecal transplants, and the upshot is that you have to wipe out the bad guys and then it holds when you introduce the good flora from whoever. That’s what holistic vets are starting to do for pets with gut disbiosis, and it re-kindled my desire to try it again, but my daughter now lives far enough away to make it hard to “get it fresh” (chuckle). But if you find a good donar, and have a doc that knows how to wipe out the bad guys, then DO IT. Get over the idea and help yourself out! It works.
The Brain Maker doctor talks about MS patients recovering from fecal transplants. Also it’s my suspicion that a virus is involved and that’s why we keep relapsing. In theory, we should be able to establish a healthy gut flora and that should be that. In reality, I don’t think that’s what is happening.
Hi Carol
Might it be that herbicides in your food and water are messing with your gut flora? Perhaps it would explain the relapses?
Along with fermented foods etc I’m now trying a no-herbicides diet: total organic food and (real) spring water. I think it already is making a difference, where the fermented foods alone didn’t seem to have much effect. I’ll be trying out some of your suggestions, too, thank you!
Hi Carol
Might it be that herbicides in your food and water are messing with your gut flora? Perhaps it would explain the relapses?
Along with fermented foods etc I’m now trying a no-herbicides diet: total organic food and (real) spring water. I think it already is making a difference, where the fermented foods alone didn’t seem to have much effect. I’ll be trying out some of your suggestions, too, thank you!
Thank you for sharing your recovery story and protocol. I accidentally found out just how helpful the probiotics I’m taking were to my treatment. I ran out once, but because I have so many pills in my pill box, I didn’t notice. It only took 4 days and my fatigue was getting exponentially worse…but more interestingly, my neurological symptoms were back with a vengeance. By neurological, I’m referring to coordination issues where it seems my fine motor skills evaporate and it’s hard to walk, write, type, use buttons, etc. I certainly didn’t expect that, and like Carol, I can’t explain why. However, I will make sure not to run out again. I did my homework on brands and strains too and agree the more strains and the more CFU, the better. I only use one product, but this makes me wonder if I should try more.
I found this fascinating and am so happy she is in recovery. I too recovered from Chronic Fatigue after feeling like I had the drop-dead flu for five years. I went from doctor to doctor seeking help and finally found a doctor who prescribed diflucan for me for candida. It worked. I changed my diet to an alkaline diet and between the med and diet I recovered. It was a miracle and one I wish for every patient.
That was 20 years ago and I still believe a lot of disease begins in the gut. Now, I would not take diflucan, I would take Neem pills because they will get rid of candida and are not harmful to the kidneys. I would have genetic testing to see if you have MTHFR because that interferes with the livers ability to detoxify the body, I would take probiotics and do the alkaline diet, I would do emotion/Body code, and I would do Elan light therapy which helps detoxify the body. I would also try some L-arginine or another supplement (can I name a brand?)
It is my passion to see people heal.
Patty,Ph.D, Holistic Nutrition
I am getting good results from S. boulardii and a few other things. I just wrote a long post about it including medical studies. Cort, let me know if you are interested – we need to get the word out.
Mimi
I too would like to see a list of the brands Carol takes. A couple of the ones listed in the article did not have the word “live” in it, so is there some other criteria other than that word to tell us the supplement has live cultures?
Thank you so much for sharing this very positive experience with probiotics. After reading, I did do a quick look online to see what is said about whether there is a “safe” level of supplementation of probiotics that one should not exceed–did find several articles on this subject. One very important point was made: If someone is immunosuppressed (say, someone who has cancer or AIDS, or someone who is on signficant amounts of prednisone or other meds which may suppress immunity), then taking probiotics MAY be contraindicated/possible harmful, so this should be carefully discussed with one’s doctor.
As to whether it is possibly harmful to take “too many” probiotics, here are a couple of links to articles on this subject:
https://labdoor.com/article/can-you-overdose-on-probiotics
http://news.health.com/2015/04/03/can-you-overdose-on-probiotics/
http://nootriment.com/how-much-probiotics-should-i-take/
I also want to mention that research is showing that probiotics DO help reduce anxiety and depression:
http://www.prevention.com/mind-body/probiotics-antidepressants
https://www.psychologytoday.com/blog/inner-source/201411/the-gut-microbiome-anxiety-and-depression-6-steps-take
More research is needed to know as much as we’d like to on this subject, but it is VERY interesting, and personally I DO believe that some nutrients, neutraceuticals, supplements may take the place of some prescription meds for certain people who have certain ailments—possibly without the same risk of side effects and for a lot less money in many cases.
I doubt very very much she ever had true Chronic Fatigue Syndrome ‘ever’a lot of people are given CFS diagnosis by Doctors who cannot figure out someones case its obvious she
had numerous other diagnosis…She could have had soley a thyroid Hashimoto’s issue I have seen countless Thyroid cases fall into the waste basket diagnosis of CFS…I have
even seen patients told they had CFS but started on thyroid meds & diet reversed their illness…She could have even had a food intolerance that resolved…
Hi,
I have had true CFS for 20 years and currently I am on my 6th different iteration – meaning different symptoms and issues. However, the underlying exercise intolerance has always been a constant. I have fixed many issues in the past with a strict diet and just drinking lots of kefir which got me from 60% to 90% in 6 months. However, it did not fix my exercise intolerance, but it did improve sleep, fix night sweats, increased my ability to exercise, eliminated sort throats, light senstivity, and brain fog, fixed my low body temperature and I felt good for the first time in 5 years. However, I was stupid, and stopped doing all of the good stuff and over time kept pushing my exercise and then had EBV attack my brain and nervous system and came close to killing me. 2 years later, I got back to 70% after 1.5 years on anti-virals. I was somewhat happy there, and went of my first vacation in 3 years which basically caused me to crash. That was about 5 months ago. I recovered from the trip after about 1 month, and then started Ken’s protocol with Minocycline which crashed me again (maybe it is a herx or maybe its our bodies inability to detoxify). I was doing the herbal anti-biotics and then the probiotics and doing better, but then my kids brought home one virus after another and I ended up bedbound. Yesterday, was my first day that was better than the last, but then I was unable to sleep at all last night. Anwyay, my rambling has 3 points
1) Go slowly and stress the probiotics while you kill off what you can (herbs, essential oils, anti-biotics).
2) Clean up your diet to support this environment and help your body find ways to detox.
3) It may not be a cure for True ME/CFS, but 50% is far better than 20% and 80% is far better than 50% (which is where I was before this started and it is where I believe I can end up again). However, I will always hope for 100%
Thanks Chris…Those sound like words of wisdom…
Good luck on your next recovery…
Chris, thanks for you hard-earned wisdom.
That’s great that you were able to improve with kefir, and Carol with her grab-bag of unstudied strains of probiotics.
But that same kefir and probiotics could be deadly for some with histamine intolerance or ammonia issues.
Funny, and not so funny that Carol mocks Align. It’s one of the few strains that’s been shown in a clinical study to help ME/CFS. Sure it’s a ridiculously low dose, but you can find the same b. infantis in other single strain products.
Nope. You are wrong. I had/have ME/CFS. A defining characteristic of ME/CFS is exercise intolerance and I had that to the max. It would be a rare CFS patient indeed who didn’t have trouble getting a diagnosis. A MS specialist at Georgetown University gave me the definitive diagnose after spending six hours with me. He had every conceivable test to make the ME/CFS diagnosis. I mean spinal tap results, in hospital sleep tests, brain MRIs, blood work for everything from viruses to Lyme’s disease. He was probably the 20th Doctor I had been to. Read my book on the subject http://www.amazon.com/Chronic-Fatigue-Syndrome-Revised-Edition/dp/1508677425
Unfortunately I and I’m sure many others with CFS have trouble tolerating the tiniest amount of probiotics without becoming severely ill. Even fermented foods make me much much worse. When I take a probiotic, within several hours to the next day I develop severe fatigue, malaise, low grade fever, brain fog, nausea and just feel terrible. Have you ever had that? That tells me the CFS is really bad and the immune system is hyper sensitive and Inflammation is through the roof.
Wonderful article. I have FM and have had no relief. I have been on no grains, sugar, dairy diet for years for ulcerative proctitis and it has kept those symptoms at bay. I had brain surgery last September for insertion of a shunt for “normal pressure hydrocephalus” and it was miraculously successful. Gone are incontinence, mild dementia, hypoxemia (was on O2 24/7) and gait disturbances. The FM did not go away and I have had a gut relapse to to dietary indescretions. This article rings true for me and have a great deal of optimism that returning to my tried and true diet and now an exploration of different probiotics will be a turning point for me. We’ll see. Thanks Cort and Carol!
I had the opposite reaction to Carol when I took a high dose of probiotics.
I took an off-the-shelf high-potency blend of probiotics and had a catastrophic reaction to them.
Previously, I had been experiencing the best health since becoming ill ten years earlier, after very gradual improvements. I was able to participate in some normal activities for the first time in ten years.
But now i have severe ME bordering on very severe ME. I took the probiotics for five days in a row, because I thought they were safe, and then had a sudden reaction. I’d never reacted to probiotics before.
Now, as a direct consequence, I’ve developed horrible complications such as: severe IBS (never had it before now); severe food intolerances (never had it before); a comorbid fibro-like illness (never had pain as part of ME before now); distressing neurological symptoms; and other complications. I haven’t left my bed for a year except for the toilet.
So please don’t assume that probiotics will be safe. Be cautious. Sometimes no action is better than action however desperate we are.
Thanks, Bob – everyone be careful. I must say I don’t know how you would avoid what happened though, since you did OK on them and then had a horrific reaction. That’s really rough. It does indicate how powerful the gut is….I wonder if starting with kefir and fermented foods would be a good way to go?
Hi Cort, is there a particular kefir you recommend? The ones I’ve seen seem to have a lot of sugar.
I use both home-made and store-bought kefir. (I should use the plain kefir more than I do :)) The home-made kefir in my experience is FAR more powerful but the store-bought stuff does help – but in a different way. I find that it’s calming.
You can find a video on how to make it in our Media section – on the 3rd or 4th page I think. There’s a place you can send away to get the culture. After you get that it’s just the cost of the milk or milk substitute that you use.
I am sooo sorry to hear that. This is such a horrible illness and so unpredictable in so many ways.
Hi Bob , I initially had good results with probiotics then had bad reactions too. Ive since been helped so much by 3 things, the things these women did https://l.facebook.com/l.php?u=https%3A%2F%2Fpoptop.hypermart.net%2Fmartyjsmith.html%3Ffbclid%3DIwAR2suNwoeZXBPiGw88wJjslgzEZqvGRUw_k6j9jIJYNawvF1BroO20dcxeA&h=AT3BJVavsPMvb-V4q8QEJGSGK-Np8g3zfg2FPxIXkiXqFF0NfjMvB1fKNyCsIXsV77duyV8S7FidxLC30DRpW0zGZCoC8_njtMM3Auzws5lfVQsSTJWu1HQFw6i0p9cvUA , a Bob Beck Blood electrifier ( sounds crazy but its helped many CFS ppl) , and a Rife Machine. Hope something here helps.
You described my exact reaction to probiotics. Its as if my immune system goes insane at the tiniest amount of bacteria from anything thats fermented. Same exact symptoms you listed. Its a nightmare.
Carol can you please tell me what kind of prebiotics you take? Also what brand of Kombuchi ended up tasting the best or you liked the best? Thanks so much!
I enjoyed the article because it appears to confirm again the model that CFS (and many other autoimmune diseases) are microbiome dysfunctions. It is unfortunate that the remission appears to be only controlling the dysfunction, i.e. she must keep taking 210 Billion CFU/daily of probiotics to prevent a relapse. This is much shorter than the relapse time seen with fecal transplants.
A proper remission would mean that she could stop taking the probiotics and suffer no relapse.
I have written up more comments on my blog which is focused eliminating the dysfunction microbiome and establishing a stable persistent healthy microbiome.
Thank you so much Carol for sharing all this great information! I’ve had CFS/ME since 1997 and FMS a few years before that; I’m 71 now. My gut is my nemesis, but has been since young adulthood. And when it’s riled up, it brings on all kinds of other nasty symptoms: cold sweats, increase in rapid heart beat, vertigo, lightheadedness, increased fatigue…just a lot of bad things. My Houston doctor used to call these symptoms a “vasovagal reaction.” I’m in NY now since 2008 and no doctor treats my CFS. A rheumatologist treats my FMS. Like you say, no doctor is likely going to recommend high doses of probiotics. Coincidentally, awhile before Thanksgiving 2015, I saw one of those infomercials on Perfect Probiotics, and I was skeptical. I bought only one bottle, and took one a day. Because nothing bad happened, I bought the three pack since it’s less expensive. I do think they are helping, but it took some weeks to start noticing a difference. I cannot give good objective evidence, but it does seem my colon is functioning a bit better, and I think they’re helping my medications work more efficiently. I’m going to add some other high quality probiotics I had on hand from Swanson; better than throwing them away, and they will increase the CFUs. Then I’ll see how that goes and then add even more and try different ones from Amazon. Oh, yes, and the prebiotics, too! I need to also lessen my carb intake; I just go overboard on carbs. I’m glad you shared your experiences with us. It reinforces my willingness to stay on Perfect Probiotics, as well as to add others and rotate them and experiment with upping my dosage a bit at a time. Thank you Cort for the resources. I’m eager to watch the videos and information from Dr. Perlmutter. 😀
I’ve been sick since the 80’s and have also been a carb junkie. Now that I’m older carbs also make me gain weight, ao I’ve finally had to rein it in. An AHA! moment was after trying the fasting diet–periodically doing 24 hour fasts. That’s when I realized that carbs made so many symptons worse: bloating (which means carbs make bad bacteria & yeasts grow), fatigue, and even symptoms of tick infections (some believe these bacteria feed on carbs).
During one period I was fasting from suppr one night to supper the next 4 times a week, and my energy was better than it had been for years! But then I started adding some simple carbs back into my diet and the cravings took over again, so fast. To me, the gut connection seems profound. Yes, probiotics help, but for me diet is the clincher. It doesn’t cure me, but it makes as much improvement as antibiotics & antivirals have.
I’m working on getting back to that place again. I just wish it weren’t so hard to do . . . 😉 What I look forward to, once I’ve done a number of these fasts, is having the cravings & hunger which rule my life go away, too.
There are carb craving microbes in our gut. When the carb craving microbes become more dominant than the good microbes then we crave carbs. It’s not us that are craving carbs, it’s the critters in our gut. That’s why I lost 18 pounds doing this. I quit craving carbs. So fasting won’t work. You have to change the ratio of good critters to bad critters in your gut. That’s why probiotics are causing dramatic weight loss in obese people. Probiotics America has a long drawn out and boring video about this subject. But if you skip to about 15 minutes in it talks about carbon craving yeasts that take over our desires.
https://www.youtube.com/watch?v=jQr5PMSqkSk
I’ve definitely got the carb craving buggers in my gut.
Hmmmm . . .I was assuming that the fasting caused the sugar craving bacteria & yeasts to die off. At any rate, fasting has been the best way I’ve found to lose the cravings—for some reason easier for me than just changing my diet. But I do take probiotics too, so maybe it’s the combination of effects: lack of sugars cause the bad bug to diminish while I also replace with better stuff.
Thanks for your story, Terry. I know just what you mean. Curiously, when I started taking Saccomyces boulardii a couple weeks ago, my sugar cravings stopped. It took 3 days to start feeling better, and I herxed for a day – very week and tired. Then boom, I felt well. I have only crashed onece since, and only for a day.
You look crazy young.
Carol, thanks very much for sharing your probiotic experience with us. Probiotics seem to hold a lot of promise for us ME/CFS-ers.
My disease has been heavy on the GI symptoms. For years, probiotics used to help when my GI symptoms acted up. Now, probiotics make the symptoms worse. I would love to know why. The probiotics I previously took were good brands too. One was Solaray, although not the one Carol lists in her article. Yogurt is fine and doesn’t have the same bad effects. Homemade pickles are helpful (but too hard to make).
Maybe, it’s as Lorrie said above? The immunosuppressed may have trouble with probiotics? As my disease progressed, my immune deficits definitely got worse.
Congrats, Carol on finding a good treatment!
How do I get the list and where can I buy them from .i am so struggling at the mo with me and cfs thank you .the info sounds promising
Interesting. My wife and I tried probiotics but it didn’t help, probably not the right ones. We are currently using Kefir, about a year into it and improving. We are not out of the woods, yet however, but have seen drastic improvement. Hopefully we will get to where your are. Congratulations. It’s interesting you mention the XRMV virus. I had contacted Judy Mikovits and sent her my blood back in 2011. It was right at the time she got tossed from the Whittemore Peterson Institute. But she was able to look at my blood and she sent me an email saying I had evidence of XRMV in my blood. But her samples were destroyed.
Congratulations on our improvement. Are you using store-bought or home-made kefir?
I have tried tiny amounts of kefir two or three times over 6 or more years. I’d try a little more than a teaspoon and the result would be very painful abdominal cramps and intense nearly-immediate diarrhea. Same for kombucha. Sauerkraut I can tolerate in small servings. I do take pre- and probiotics, but now I’m inspired to add more strains. Chlorella always makes me feel better rapidly, but the liquid variety can be tough to force down after about 3 weeks.
Good luck Barbara!
Hi, It’s Carol Wolf here, author of this blog. There seems to be some serious misinformation floating around the web about how much I’m paying monthly for probiotics. Just to clarify the point, I wrote this blog. The max I pay is about $100 a month. Since I’m self employed, without great health care – $6,000 a year deductible, ugh-I was paying out of pocket for the eight prescription drugs I was once one. Now I no longer take six of eight prescription drugs so the $100 a month I spend on probiotics leaves me way ahead of the game money wise. You will have to do your own math for your own situation, but here is mine with out of pocket expenses:
http://www.lalupablog.com/#!My-Monthly-Costs-for-Probiotics/c1kw6/5694571c0cf21038318c0637
Thanks Carol for straightening that out.
Congratulations on your recovery! I’m glad you found what works for you, and am so happy for you!
Thanks for the article and all the great comments. I’m giving the probiotic bombardment a try. My question is do you have to slowly ramp up to taking four different kinds? I had been on one, now am taking two and drinking kombucha/eating sauerkraut. Did you just pile them all on at same time, or wait a span for your body to adjust to each new pill/bunch of new strains?
So sick of CFS and hopeful this helps!! Thanks again.
Carol, have you ever used Prescript Assist?I hear it is the only soil based probiotic on the market and also contains prebiotics. Also, do you think psyllium husks make a good prebiotic?
Ken mentions Prescript Assist as one he uses and I have used it with no issues. Good prebiotics include potato starch, inulin, chicory root, jerusalem artichoke. I have not hard of psyllium being a prebiotic.
Carol, I have a couple of questions: did you ever try Prescript Assist? I hear it is the only soil based probiotic on the market. What about Biokult and last but not least do you think Psyllium Husks make a good prebiotic? Best wishes!
Last year the Lipkin/Hornig at Columbia study on the gut biome & ME/CFS got enough money from the government & crowd sourcing to make a start?
Any news on the project?
Links?
Thanks
Sean
Found the answer to my question about the Columbia ME/CFS gut biome project.
Cort’s recent article on Simarron Research 🙂
http://simmaronresearch.com/2015/12/ian-lipkin-three-to-five-years-to-solve-chronic-fatigue-syndrome-mecfs/
I’m all about PSL#3
I was previously taking it with no discernible results, but this time around I see improvements. Whether this has to do with timing or application, I couldn’t say.
Initially I was taking it mid-day, after a meal – but now I take it first thing in the morning on an empty stomach and wait 1 1/2 hours before eating. Also, I know VSL#3 must be handled with care. Keep it chilled and be sure you purchase it from someone who does also.
I would LOVE to know more on this topic and wish I knew for certain I could attribute the positive changes in my health to daily VSL#3!
How much VSL#3 are you taking? What improvements do you see?
I am just taking 1- 1 1/2 packet each morning on an empty stomach.
As for improvements – I have seen a slight but sudden improvement in fatigue. The only other thing that has changed in my routine was the addition of a Vitamin C supplement and acupuncture.
There’s no way to know what has helped – if anything. It could just be my body’s natural ebb and flow with CFS.
I still feel like utter hell, but to feel a shift so sudden is interesting. I know the date and time it occurred.
Has a shift like that happened to anyone else, or it it more common to experience a more gradual improvement?
Cort – any thoughts? 🙂
I don’t know but it sounds good 🙂
Amazon running a deal on what appears to be decent probiotics. Never tried them before but figured for the price I’d give them a try.
http://www.amazon.com/gp/product/B00JEKYNZA/ref=ox_sc_act_title_1?ie=UTF8&psc=1&smid=A2SCMGMB9GAZTI
Thanks!
Hi Carol, did you start taking 4 different types of probiotics straight away or did you start with one and build up and were you taking the 4 types at different times in the day. Thanks
I’m wondering if a course of proteolytic enzymes might be useful during the use of probiotics. I just take the enzymes occasionally. I never took a full regimen of 3X per day but many positive claims are made for it. I’ve taken them if sick or after a rare food binge. About 6-10 Wobenzymes but never long enough to report any results. There’s another regimen of all Standard Lab products but can be expensive.
For probiotics I’ve been taking Swanson’s “Ultimate Probiotic Formula,” 14 strains, which might be of interest.
Hi,
Dr Cheney highly recommends Wobenzyne-N as part of his protocol to aid the digestive process and decrease inflammation. I do not see it as a probiotic aid. For probiotics stick with pre-biotics. Another group of enzymes is recommended by Ken Lassesen to be used with herbal anti-biotics to break down biofilms –
https://cfsremission.wordpress.com/2016/01/15/controlling-a-herxheimer-reaction/
He has other blogs if you search for them.
I take my probiotics with RESISTANT starch. RS helps carry them down into the large intestine.
I think a reason why some CFS sufferers like myself get benefit is that they help with mineral absorption
http://www.essentialformulas.com/efi.cgim?template=it_takes_GUTS_improve_bone_density
Thank you so much for this open sharing of what happened to you. Years ago I went through something very similar with severe allergies, candida and hypoglycemia. For me the answer turned out to be soil-based probiotics. They are much stronger than the milk-based probiotics and easily survive the stomach acid when you take them. I am so grateful to be totally healthy today, age 78, and still working. I am so happy to hear about your experience because I know how wonderful it feels to have this help!!
Carol, Thanks for your story, I am formally diagnosed with Fibromyalgia, but I call it “they don’t know what they eff I have syndrome” it started out acting like MS, 9 months after Cervical Cancer and Chemo, but no lesions, just inflammation of unknown origin, pesky Cancer came back 9 years later in Uterus and hospital gave me a staph infection as door prize that last 7 months with a side of blood poisoning. Then I had 18 months of steroids and my life just kept getting better and my body decided to act just like I had Lupus, Kidneys, Rashes and that permanent slapped cheek look, they call a butterfly rash, but no antibodies. Well 2 years ago my body decided to try Mono for 10 weeks, even my lymph nodes in armpits joined the party with my tender swollen spleen, but no antibodies. I just am dog tired and get a sore throat every time I push myself beyond my 2 hours of energy. It’s so great to be a hypochondriac that even bleeds from her pores when she gets UTI, now. Well, there’s just no test to prove what I am, only inflammation of unknown origin. But I am the CBD oil Queen, and the only thing bothering me really now is Interstitial Cystitis, IBS, Nausea when I eat, Bloating, Reflux, my pancreas thought 190 pounds me was malnourished, so I gained 60 pounds in 18months and oh how I wish I had some THC in that oil for my Degenerative Disc. And Most of All Fatigue. But your story makes me think most all of my annoyances are my gut. Antibiotics feel like chemo to me, I get that sick. I am going to kill the yeast by starvation. I did decide to try some yeast killer. Pricey, but happy tax return. I know it’s yeast because I did the saliva test. And who knows maybe I am actually none of the above just been here fermenting to death since 1991. A whole new animal to add to the mix with all the symptoms but doesn’t have a test to prove I exist but saliva in a glass. If so I am going to think of a catchy name and be very p!$$3d at all the Doctors I have seen for 25 years and spent about at least $250,000 because I had a yeast infection.
Not necessarily virus, but gram negative bacteria. I am dealing with klebsiella pneumoniae, it’s causing same symptoms you had and some other nasty things. Very tough to beat! It just gets resistant to every antibiotic after short amounts of time.
Try a rife machine if you know the specific microbe youre fighting ( looks like you do). They will not become resistant to it, and it can eliminate it. The cheapest one I know of is the spooky2 in contact mode…very cheap and amazingly effective – big fb group too. Good luck
I had a lot of trouble with klebsiella. The way to beat it is with herbs which contain essential oils. Two brands which work are bactrex by metagenics and bactoCandGI by mediherb. Both Australian companies.
I am about to perform DIY fecal transplants on myself.
I just read all of this because my gut just keeps getting worse. I took notes and emailed myself every link. Wow. What a study. Four hours, and now to go back and read all the links, then look up everything on my notes. I deserve to be cured (as we all do). I just know this gut thing is it. And I know I was born with it!
Carol’s blog that shes links to in the article seems to have gone. I don’t suppose anyone knows if it’s moved elsewhere or her blog entries preserved somewhere?
Yes, I think she closed her website.
Hi Carol
I’m on immunosuppressants because I had/have uveitis( doctors still have me on them and it’s been a year). Now I get Infliximab infusions for. Rohan’s disease. I asked my GI if I could take L plantarum strain and he said I could. But my question is don’t probiotics BOOST the immunity when I’m trying to suppress it? When I did take th L plantarum I felt awesome..but then got worried about the “boosting immunity “ part.
Does it just boost immunity int the intestinal area or the whole body?
*Crohns disease
It’s super interesting to come across this… I had CFS on and off, and 5 years ago my flare was cured by omitting gluten/dairy and starting a gut health regimen that included probiotics – sometimes in massive amounts. I didn’t link the whole thing to probiotics, but last summer I came off them slowly (I took them for 5 years). Initially, I didn’t notice any issue, but I’ve had a major depression and a CFS flare recently – it could as well have been the reason.
However, if you read up on studies where people take probiotics after antibiotics use, it seems that the probiotics actually inhibit the return of the healthy gut flora. And they do not stay in the gut. So basically you get someone dependent on them to keep your gut in check. So I would love to find a way not to be dependent on them, and not to have to take them forever… not sure if it is possible though.
@Carol, do you think you could ever get off them?