Kathy’s Story – Auto Immune & Muscle Weakness- A Plea to Readers for Insight and Advice


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Many of my readers have kept up with the last year of my life, dealing with my daughter’s acute onset of intestinal issues that resulted in a hellish winter & spring, leaving her with post infectious IBS, some muscle issues, and headaches. We manage well for the most part, but it all begs the question – what is going on in our environment to cause perfectly healthy people’s bodies to turn on them all of a sudden? Our aut0-immune system is under fire, and it is scary.

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A reader in Boston has reached out to me, and asked that I share her story, in hopes that someone will be able to shed some light on what could possibly be happening to her. Do you know of a doctor that could help her? A naturopath? A diet? Have you had similar issues and have found relief? Please reach out to her, make a connection.

“I am a retired woman living in Boston who never even had a stomach ache before being treated for HPylori in January 2011. In July 2010, I had a knee replacement and had to be on Advil for 2 years and Famatodine (Pepcid prescription) for 5 months due to stomach pain at night with meds they gave me for knee. I learned that combination, with Omeprazole, were bad for the small intestine.

I am  looking for help with my medical issues.  When I stopped the meds for HPylori, I was in awful pain that has lasted for 2 years. I had all GI tests to rule out GI issues. The GI doc kept me on Omeprazole for a year. I suffered in pain each day after the meds wore off. I could not take secondary meds as they did not help. I had pain exactly 2 hours after eating. It was like a clock going off. I later learned that is when the small intestine and large intestine meet with passage of food.  In January of 2012, I had rheumatoid arthritis (RA)  risk factor and was told to take an anti depressant for chronic pain that the GI doctors could not resolve. Another GI doctor suggested  probiotics. They helped greatly. However, I developed arthritic pain in my hands and hip, so I stopped. I searched the internet and found a friend in DC who was treating herself for yeast overgrowth, so I went on a candida diet working with a researcher who knew a lot from his 30 years of work. I could not take a probiotic so I did it with yogurt. I felt so fabulous using whole food and organic foods for months. The problem was I kept losing weight and could not stop, it was very scary.

I went to a naturopath who told me I probably had a leaky gut  but do a 4 day rotation diet with an increase of fruit and potatoes. Looking back, I think it was bad advice. I had a hard time living like that too. I had been rotating my food on candida diet, but was not as strict as naturopath said it had to be. In August 2012, I thought I was allergic to everything I was eating – for example, my eyes became itchy and dry.  I went to an allergist who said I had no western allergies, but 19 food intolerances from the diet prescribed by the naturopath. I went back to my candida diet and was doing all right, but then dairy became a problem -  which was not before consulting the naturopath. I had stopped the diet and tried to go back with disastrous results. My whole life I have eaten dairy without problems. This meant I could no longer consume yogurt, which I felt was my only source of probiotics. They told me I probably had Sjogren’s syndrome and rheumatoid arthritis. I then went on prednisone for eye trouble for a month.

One day in August 2012 my artificial knee tightened up really bad until I started on prednisone (for my eyes). I noticed my calf muscles became very weak when I was in the pool. When the prednisone stopped, my muscles improved for 5 days. A doctor friend told me I needed to increase my calories and fats. I ate some M&M’S  and peanut butter -  and the muscle problem started again.

My GI doc was alarmed at my weight loss, so she had me see nutritionist and go on FODMAP diet, which caused terrible leg cramps so I had to stop it. I maintained my weight though.

I have been to so many doctors who cannot explain my weight loss or muscle weakness. I go to physical therapy, but with no success. They have no idea. The only ray of hope was after I had detox with acupuncturist on 2 times, my physical therapist  saw a difference. They told me food allergies do not affect whole muscle groups. It is generally all-over weakness. I have been like this for 2 months, with my artificial knee in jeopardy and muscles so weak in my calves and thigh area above the replacement.

Last week, I went to holistic nutritionist who does muscle testing to see what you cannot eat. She also thinks I have a staph infection, HPylori and 2 kinds of candida. She has been doing this for 30 years. She put me on strict 4 day with foods that can be difficult to find. You cannot eat out anywhere or deviate from what she says. It is overwhelming me! I have increased the good grains and doing what she says. My legs are still bad and may be getting worse. She thinks I am having ‘die off‘. Her diet is 80 percent of what I was doing since January. I had terrible arthritic reaction to her supplements, so I stopped them. I can hardly walk. She has supplements for the bacterial stuff, but I do not think my body will tolerate them. I have terrible chemical sensitivities. I am so frustrated and scared. I keep losing weight even on her diet increasing protein and grains and fruit.

I am looking to connect with anyone who knows about muscle weakness. It came  on fast. I just wonder if it is staph (internet says that can happen) or food allergies to overeating foods since January. My first 7 months were rotating the protein and fruit carefully, but random rotation on vegetables. I hope I have not caused more allergies. I never had a food allergy in my life. I am so afraid of becoming crippled. Would you know good resource person to turn to for leg weakness?

Has anyone resolved stomach issues with someone in Boston area without using chemical or herbal products?

Does anyone out there have chemical sensitivites that cause arthritic reactions? If so, do you know any person who helps people with this problem?

Has anyone ever heard of arthritic problems with probiotic? The drug companies use them for arthritis, so they are baffled. I need to use one because I know they are part of my answer. I wrote to doctors to find someone doing research on probiotics, but with no success. I have to do allergy free ones. I wondered if it would help to try a baby one, but I do not know the name of an allergy free one. I am desperate. I have heard of a vegetarian one. I am allergic to magnesium stearate, which many drugs or capsules are made from. There are drugs made without this though.

I am so discouraged at what my life is like right now. I am so sick of thinking about what I can or cannot eat. My health feels like it is deteriorating in front of my eyes daily.  I think I will need to go back to GI, who I think is good with women’s issues. I need to gain weight. It is really scaring me and my family, who have been so supportive. Of course they worry, it is to be expected. I wanted to be active in retirement and I feel like I am living in hell. I would appreciate any help on my issues.

Thank you.”

Please contact Kathy at towerkc@aol.com if you think you might be of any help to her.



2 Comments

  1. A few things came to mind. What if it’s not autoimmune? What if it’s a few things creating a multifaceted problem? Leg/muscle weakness: what if it’s spine/neck/back related and weakness is the way it presents? Doctor then Chiropractor/Sport Massage therapy? (Not all sport massages are equal. I’ve had plenty of massages, but current Sport Massage guy is leaps and bounds better than all others.) The other thing: if it’s allergy, have you tried an antihistimine? I was told for years that I had yeast infections but got no relief from those treatments. I *knew* it wasn’t yeast. 17 yrs later it dawned on me, in desperation, to try Benadryll. It worked after one dose! I don’t believe it’s systemic yeast. I looked into that too. It’s usually an acute infection, and people die from that sometimes. I don’t believe that it can live in us for yrs and just make a nuisance of itself. Anyway, even if antihistimines don’t fully “cure” things, if it improves, then you know you’re on the right track. So, that’s my 2 cents.

    1. Casey, it finally went through! Thanks for your input I will forward this over to her. I *knew* you would have some insight for us! Thanks for trying over & over again to comment! :)

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