MS, Gut Bacteria, and the Lonely, Stressful Job of Finding Your Way

MS, Gut Bacteria, and the Lonely, Stressful Job of Finding Your Way

making a difference


My life has been in limbo for several months and it’s been a dark and scary place to be. One quickly learns that life can be unpredictable when living with multiple sclerosis. Each day can bring different challenges and life will never be the same.

But I must now face a new challenge, one I was not prepared for. I’ve been writing a lot about gut health because I struggle daily with stomach pain, diarrhea, nausea, dizziness, and joint pain. This stems from the diagnoses I received in 2017; small intestinal bacterial overgrowth (SIBO), a hiatal hernia, and acid reflux are all wreaking havoc on my body.

SIBO is chronic, so now I’m the proud owner of two chronic illnesses. Lucky me.

I’m back to square one, fighting my way through an endless and overwhelming learning curve. Unlike my MS diagnosis in 1986 when there was no internet to rely on, the web is now at my fingertips, and it can be both a help and a hindrance. A plethora of information is available, both trustworthy and spam, and I had to find sources I could depend on for the sake of my health.

I’ve also found some of my doctors are unfamiliar with SIBO. That is both disappointing and maddening. I’m left feeling anxious as I’m forced to look for more knowledgeable doctors.  

To top it off, current research finds a link between gut health and autoimmune disease. This article details how a study found gut bacteria may drive progression in MS patients. Yikes.

As days pass into weeks of finding my way around a life I hardly recognize, I’m forced to stay close to home. Stomach pain and the need to be near a bathroom forces me to cancel social and professional engagements.

As if all this weren’t enough, my MS is barking at me after months of enormous stress and anxiety. My legs are weak, I can’t feel half of my body, and the level of fatigue is enormous. “Stay strong, stay strong,” the little voice inside my head screams. “I’m trying,” I answer. But I don’t know how much I can take.

I consulted with a new gastroenterologist from Johns Hopkins Medicine who prescribed Bentyl (dicyclomine), an antispasmodic, to relieve stomach pain. He also recommended scheduling an appointment with a well-respected registered dietitian from Johns Hopkins Medicine who will hopefully help me use food as medicine.

I’ve already eliminated gluten, dairy, and sugar from my diet since they can attach themselves to unwanted bacteria in the gut. Yet, what I’m doing on my own doesn’t seem to be enough. I need someone to guide me. Mealtimes are no longer pleasurable. Every bite I take I wonder if my stomach will digest it normally or I’ll pay the price with stomach pain. I can’t wait for my first session to begin. I pray she can help me get my life back on track.

And I pray my MS goes back into remission.

Following are a few articles about the relationship between gut bacteria and MS. More and more research is being done on gut health and MS, and we all need to stay on top of it for the sake of our health.

Wish me luck and please say a prayer. I’ll need it.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Cathy Chester BNS Writer
Cathy Chester is an award-winning health advocate and freelance writer whose flourishing blog, AnEmpoweredSpirit.com, focuses on staying positive despite a diagnosis of Multiple Sclerosis. Diagnosed with RRMS in 1986 (before any approved medications or the Internet) Cathy knows how frightening this unpredictable disease can be. Today she helps others manage their MS journey by using her unique skills as a writer, patient and certified health advocate. She is a contributor and moderator for MultipleSclerosis.net and also writes for Multiple Sclerosis News Today, Mango Health and PatientsLikeMe. Her work has been featured in National Multiple Sclerosis Society’s Momentum magazine, NARCOMS Now, MSAA and was published in countless online publications including Midlife Boulevard, BetterAfter50, The Mighty, BlogHer, SheSpeaks, Erma Bombeck Writers’ Workshop and The Huffington Post . Cathy lives in New Jersey with her loving husband and son and two adorable cats.
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Cathy Chester BNS Writer
Cathy Chester is an award-winning health advocate and freelance writer whose flourishing blog, AnEmpoweredSpirit.com, focuses on staying positive despite a diagnosis of Multiple Sclerosis. Diagnosed with RRMS in 1986 (before any approved medications or the Internet) Cathy knows how frightening this unpredictable disease can be. Today she helps others manage their MS journey by using her unique skills as a writer, patient and certified health advocate. She is a contributor and moderator for MultipleSclerosis.net and also writes for Multiple Sclerosis News Today, Mango Health and PatientsLikeMe. Her work has been featured in National Multiple Sclerosis Society’s Momentum magazine, NARCOMS Now, MSAA and was published in countless online publications including Midlife Boulevard, BetterAfter50, The Mighty, BlogHer, SheSpeaks, Erma Bombeck Writers’ Workshop and The Huffington Post . Cathy lives in New Jersey with her loving husband and son and two adorable cats.

8 comments

  1. Stephanie says:

    I do not suffer from MS, but I do suffer from other chronic health issues. I started my healing with a diet called AIP diet and I added a dairy/soy/gluten free prebiotic fiber as well as a daily dairy free kefir which contains ten active cultures. The diet stopped the progression of my chronic ailments, but it wasn’t until I added the kefir did I start to heal. These are just some things that worked really well for me and felt it might be worth to pass along. Prayers for good health and thank you for sharing your story.

    • FB says:

      While I agree that there are significant links between diet and many diseases, especially with some of the info coming from newer research into gut biome etc, you need to be careful about the various “diet/lifestyle” websites – all of them will ONLY include research which supports their particular viewpoint – regardless of what that viewpoint might be (i.e. “paleo” based or vegetarian/vegan orientated or whatever). The two most widely known, the Wahls Protocol and the Jelinek/OMS approach, both have quite a lot of good principles which will benefit anyone whether they have MS or not (especially around getting away from processed foods), but some of it really flies in the face of a great deal of established science.

      A lot of OMSers have serious difficulty understanding cause and effect, and once they are converted to the OMS cause they will attribute everything good to following OMS, and everything bad to not following it 100%. So, according to them absence of relapses is generally due to following OMS, and having a relapse is down to being non-compliant. If you are 150% compliant the usual fallback position to cover suffering a relapse is that you haven’t been “doing OMS for long enough” because it take 3 to 5 years to really “turn the tanker around”. It’s a bit along the lines of once you take it up you can’t afford to admit that maybe it’s not all you had hoped it would be. The fact that most MS is of the RR variety and will relapse and remit regardless of what diet you are following seems to not compute with some people who are following these dietary approaches.

      Unfortunately, when given a diagnosis of MS many people seem to stumble across one or two well presented websites with avid converts blogging and “foruming” away like crazy and singing the praises of their own dietary religion, and the newly diagnosed often don’t seem to look much further for real substantiation of what they are reading online. Those who don’t experience the success that such approaches promise often just “fade away” into the background after constantly being told that it’s their fault for not doing it right. Before diving headfirst into such approaches research more widely on the internet and dig a bit deeper, especially if the sites have user forums as often clues to how they don’t work for many people can be found in posts from those for whom it didn’t produce the proclaimed miracles, and the responses they receive from the “true believers”.

      If you are going to adopt one of these approaches, then at least do it with your eyes wide open and based on wider research than just a whole bunch of people on a site specific forum claiming success. And if you do publicly question any of their tenets in one of their forums be prepared for an onslaught of advice about how you must have faith in the approach. Questioning is not welcomed unless it is related to how to “do” the approach.

      The research that you have cited was “posted” in a lot of different places. It does draw a CORRELATION between diet and disability, but this is not the same a “cause and effect”. To draw anything more than a correlation would require considerably more research into any underlying contributing factors as to why the dietary intakes are different – for example, are the people with higher disability less able to access or prepare better foods? It’s like the Vitamin D and MS issue – it is not known whether low Vit D contributes to developing MS or whether having MS means you need more Vit D and blood tests will thus show lower Vit D levels. According to some diehard OMSers low Vit D will cause a relapse – yet this has NOT actually been proven by ANY of the Vit D research. Even the highly qualified Prof Jelinek himself has posted this on his own OMS website’ forums – and yet he claims that all of OMS is based on scientific evidence. The Vit D council is more informative and scientifically evidence based than OMS – and if the Vit D Council’s recommendations are good enough for one of the foremost MS experts in the world, then they are good enough for me.

  2. Kathy Cady says:

    I have MS and have been dealing with diarrhea/constipation issues for the past few years. I was taking a variety of supplements/prescriptions, etc. (prebiotics, probiotics, oxybutinin, kefir, tumeric, fish oil, vitamin D (5,000 IU), Centrum, calcium, low dose aspirin) and started thinking I was over dosing myself and possibly taking things that cancelled each other out so I found Happy Belly Health online and connected with Shanti Pappas, the nutritionist. She has taken me off all the above with the exception of tumeric and the probiotic and put me on a gluten-free, dairy-free, alcohol-free regimen. She ordered a variety of lab tests, asked me to do a specialized stool sample test through Genova labs and the 23andMe saliva test (results were then put through a system that resulted in providing a list of things to take and a list to avoid. She is working with my doctor who is quite interested in ‘functional medicine’. I’m already feeling better and am looking forward to positive results.

  3. Dr. Michael Greger of http://www.nutritionfacts.org is my Hero with real diet science for optimal human health. McDougall’s MS diet of the ’50’s was discounted but patients did well. MS Specialists only wanted to prescribe drugs so they did not promote his work. Dr. Terry Wahl was able to return to work after her study of functional medicine, eating only a high nutritional diet. My MS has stayed quite Benign since 1989 because I thought I had a stroke, followed low fat, low carb (virtually no wheat, sugar, or dairy) mainly vegetarian with rice based on what foods made me feel best. I am still working and functional after 28 years – finally diagnosed with MS by MRI in 2004. Microbiome & diet information is now out there but still competing with expensive drugs.

  4. Wendy says:

    I’m also gluten-, dairy-, and sugar-free. Still didn’t help. Then, I discovered Nightshades. I stay away from tomatoes, potatoes, peppers, and a few other things. It’s made ALL the difference. Best wishes!

  5. Adrian says:

    Cathy, I’m so sorry to hear of your predicament. My prayers are with you. It is lonely having MS because non-suffers cannot comprehend the invisible suffering side of it, let alone the visable, and sufferer’s know that everyone’s situation is different, so, rightly, hesitate to give advice to others. All I know is that having another chronic disease alongside MS, particularly one so uncomfortable, must be so so hard to live with. I hope you discover ways/solutions to enable you to live more comfortably. God bless you. Adrian.

  6. Greg says:

    I understand that the Whole 30 diet and the Paleo diet help fight “Internal inflammation,” which is the source of MS issues and many other health issues. Check them out.

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