, , Personal Stories
, , Personal Stories
, , Personal Stories
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Hi my name is Mariana Cordova
I was diagnosed with polymyositis 23 years ago I’ve been on predison I used to take 50 mg now I’m taking 25 I go to therapy 3 times a week but it’s no helping me I’m not getting any better. I read about your flier plan and I was wondering if it would help me to. I am interested, what would I need to do to get more information on you diet plan? I appreciate your time.
Hello,
My husband has recently been diagnosed with overlap myositis. can I please know the nutritionist in New York that you HAVE CONSULTED.
Dear Karen,
Uff..this is my third attempt to try to post a reply! My last one was lost when I tried to to post and lost the internet connection. I’ll try to remember all that I wrote!
Thank you for your reply to my post regarding my journey with Polymyositis! Part III contains that part of how I’m doing now and I believe you can find it within the same thread at the bottom of Part II. If it is any indication of how well I’m doing, I’m just arriving from a ski trip Steamboat! I’m back to myself and even better than before! I dance 5 days a week, workout with a trainer twice a week and am either performing or producing musicals throughout the year. I keep up with my gluten-free, sugar-free, vegetarian lifestyle. I eat some shellfish and fish, but limit myself to once or twice a week because of the heavy metals found in most fish and shellfish. I do a yearly detox and continue to take supplements to reinforce my immune system and the damaged liver due to the medications.
I try to do things that make sense. When the doctors wanted to give me a list of drugs before they even knew what was wrong with me, it didn’t make sense. I ended up taking the prednisone and eventually the methotrexate because I was in shock at my rapid decline and was in shock as to what else I should be doing. My relapse was my blessing, since it woke me up to the fact that I need to make changes in order to expect my situation to change. I think it is absolutely ludicrous that doctors don’t recommend dietary changes or find a relationship between diet and autoimmune disease! In all my reading, over 90% of illness can be linked to toxins in the intestines/gut. Add that to genetic tendencies and you get illnesses that come out in various forms.
With that said, I am not completely anti-medication. I believe there is a time and place for it. When the body is in crisis, medication can save lives by slowing or stopping a process. However, the error comes from thinking that the medication is all we need to get better. The medication didn’t cause the illness, so it obviously won’t be the complete cure we are looking for. We need to make lifestyle changes in order for our bodies to work properly and be ready to take over when the medication isn’t present in our systems.
I weaned myself very slowly and carefully off of the medication. I didn’t want to be on it, yet I realized the risks of getting off of it too soon. I prepared my body through diet, therapy, exercise and supplements, making sure that I was asymtomatic and my clinical lab tests supported that the disease was not in an active state. It took me nearly a year to wean from 20 mg of prednisone. I took my time and tried not to rush the process in order to avoid a relapse. Each person is different and doctors don’t really understand how to get you off of this powerful drug. Be smart and do your research so you are well informed before each step. Make sure your adrenal glands are ready to activate when the medication drops below 10 mg. Listen to your body. I found that tricking the body by altering the dosages slightly before decreasing to the next increment and extending the number of hours between dosages, helped to confuse my body so that the adrenals had to wake up and do their job.
If I remember anything else that was in my previous post, I’ll try to add it later on. In the meantime, if there is anything that I can do to help support you on your journey, please don’t hesitate to ask. I’ll be happy to share with you my experience and what I’ve discovered throughout this process.
Wishing you a very Happy and Healthy New Year!
Sincerely
Elizabeth Sanchez
Elizabeth,
I rarely come to this page. After I found this group a few months ago, I thought I would find people here with some of the answers I was seeking to this illness. I was “diagnosed” in August with Polymysitis. I use quotes because my doctor was reluctant to give me a diagnosis without the muscle biopsy he ordered. It was not within my budget. I had every symptom on the list. He has the disorder listed on my chart as my diagnosis. When I first came here, I asked if anyone had tried managing the symptoms of Polymyositis with diet, and no one seemed to have done so. Like you, I do not want any medications and their side effects to wreak havoc on my body. I have been on Prednisone since August, beginning at 60mg, and scaling down. My Doctor prescribed Methotrexate in November, along with the 20mg dosage level. He told me that I would not be able to tolerate going below 20mg of the steroid. Since he was not initially interested in my Paleo diet approach to mend my leaky gut, I decided on my first visit that I would use his steroids to get out of bed, and then I would be on my own. I have the Methotrexate (my husband filled it just in case) but I have not taken any. I have scaled down to 10mg daily, and plan to go lower. I am feeling good, other than a persistent headache, and pain/pressure in the back of my neck. The headache/neck pain was there at the onset of the disease, and even on 60mg was present.
I am so thrilled to hear of another drug-resistant warrior who has done what I am doing. Diet changes, lifestyle changes, awareness of household products and personal care products that add to the body load. I watched a video by Dr. Mercola today, and he stated that GMOs contribute to leaky gut, which trigger autoimmune disorders. I eat as clean as possible. Raw mik, cultured foods, Kombucha, Kefir, grass-fed beef, and natural, real foods.
Thank you SO much for your blog post! I wonder how you are now, and hope you are strong and healthy!
Gratefully.
Karen Brown