My discovery and journey into AI

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As with most AI my symptoms were gradual. Dry eyes and weakness in my arms and legs began the awareness of my journey into this phase of my life. Years went by. Then one day in winter of 2014 my fingers began to turn white when cold. I researched this and Raynauds came forth as a possible cause. Upon further research Sjogrens, often tied to Raynauds shed light on the other symptoms I was experiencing, sicca syndrome: dry eye, dry mouth/trouble swallowing, years of intestinal disruptions, large fiber neuropathy, dental distress, brain fog, pain from inflammation, fatigue. In 2014 I had a colonoscopy and endoscopy to try and figure out the swallowing and digestions issues. I mentioned to the Dr I thought I might have Sjogrens. No helpful results. My eye Dr just prescribed Restasis but didn't research or suggest further options.

In early 2015 I went to my Primary and asked for testing for Sjogrens which she graciously did and test confirmed self diagnosis. A Rheumatologist was consulted and diagnosis was again confirmed. At this point I was already seeing a Dr of  Natural health and getting B-12 shots which had begun to help with brain-fog and lack of energy and some natural supplements. Rheumy wanted to put me on Plaquenil. She didn't listen to a word I said so I haven't been back to see her. She talked over all my comments. I have chosen at this time to take the alternative path of nutrition and diet. For me this has been successful.  I know we all must make our own choice in this matter and respect others decision to go only with Western Medicine.

I take many supplements but feel the most effective are Omega-3's, Turmeric/Frankincense/Myrrh(Magi-Complex), B complex, Probiotics and Digestive enzymes. There are many other things on this list; Magnesium, Kefir, Vit-D. Shakes with collagen, flax oil and ground flax seed, vit-C, Kefir and berries. I cook with olive, Avocado and coconut oil. Removing Night shade's, most gluten and processed foods. It is an evolving regimen.

Contrary to what I said above I recently started LDN, Low Dose Naltrexone. I have read so many positive results from others who are using LDN, an off label script, that seems to be having remarkable results. I am in month 3 at 3.5 mg a day. My symptoms were very well controlled already but I again asked my Primary if she would prescribe for me. Her response was that this was off label and she wasn't sure about it but would research and see. I sent her links and info and she asked around at her medical facility and found another Dr who prescribes LDN for women having issues getting pregnant. She agreed and wrote the script. I don't know that I have had miraculous results, but my symptoms are not life altering at this point. My goal is to keep the progression in check. Plus Sjogrens is known to also be linked with other AI's, organ involvement and lymphoma that I do not want. Here is a link to a site filled with much information, http://www.ldndatabase.com/

I have lived with the knowledge of Auto Immunity for two years now. I have done much research and contemplation of these diseases. As of now there are theories and speculation as to the exact cause, but I lean to diet adulterated with chemicals never meant to be put in our bodies through processed foods, alteration of molecular structure of foods we eat by GMO's, childhood vaccines filled with obscene antagonist, and possible genetic links turned on by the above mentioned conditions. I feel the Western medicine is failing the AI community only looking to treat the symptom not the disease just as they do with so many other diseases. Diet and nutrition is so important. Why do Dr.s not get more training in this? 2 to 3 hours isn't enough. Awareness of AI's and training to spot them is very minimal and these diseases are growing in leaps and bounds around them. It often takes 10 years or more, multiple Dr.s and terrible biopsies and test to begin proper diagnosis. We are one of the forgotten communities. This has to change. Dr.s listen to your patients. They know what is going on in their bodies intimately. These symptoms are real and connected. Please listen and research. We are counting on you to help us live life well.

So this is my story in a nutshell. What say you?

PS  In my research I have found that Miscarriages, Chronic Ear Infections and Meningitis are associated with Sjogrens. I have had all three. Ear infections since a child, 3 miscarriages and Meningitis 5 ½ years ago. I think the massive doses of antibiotics brought on the rest of my symptoms full bore. Go figure.