2 posts tagged “autoimmune disorders”

Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe

Posted November 9th, 2012 by

Lyme Disease Patient Pampe

Getting the right diagnosis can take many years, or in the case of PatientsLikeMe patient Pampe, many decades.  After experiencing her first Lyme disease symptom in 1973, it was not until 2012 that she finally received a diagnosis that explained her many symptoms.  Discover what hindered the process and what’s she learned along the way in our interview with this highly active member, who has contributed more than 12,000 posts to our forum since joining PatientsLikeMe in 2010.

1.  You had a very long journey to discovering your Lyme disease. Where were some of the obstacles?

The main obstacle to an appropriate diagnosis of Lyme disease for me was the lack of knowledge in the traditional Western Medical System. Had my general practitioner (GP) known about the testing for Lyme, I might have been diagnosed 10-12 years earlier. Many people go from doctor to doctor and undergo a horrific array of tests and medications before they find out it is Lyme disease.

2.  We have a new Lyme Disease Forum at PatientsLikeMe. What is that important to you?

After my diagnosis and two other members of the Fibromyalgia Forum discovering they too had Lyme, I think I was pretty vocal in expressing the need for a Lyme Disease Forum. There are several clinical studies indicating that many people with autoimmune disorders, fibromyalgia, chronic fatigue syndrome, multiple sclerosis (MS), ALS and Parkinson’s disease actually have underlying Lyme disease or co-infections.

3.  You have a three-star profile as well as more than 5,600 helpful marks for your forum activity, which means you are one of the most helpful members around! What do you get out of using PatientsLikeMe?

I have always considered it an honor to help people both professionally and as a volunteer. Most people come to PatientsLikeMe in a state of shock, sadness and loneliness. They need support and information, and PatientsLikeMe can provide that in many ways. I have tried to help with support and information. What I get out of it is the absolute joy of seeing someone rise above his/her diagnosis and find new ways of being. It has been my great joy to see 4-5 new people from other forums find a Lyme disease diagnosis after reading some of the information I posted.

4.  Your profile reveals that you have an interest in alternative medicine. Where does that stem from?

During my working life, I was a nurse and psychotherapist. I was lucky to train in areas where alternative, holistic practices were available. I have seen them work and work well in many instances. I personally use alternative care for most of my health needs. There is no doubt that what we put in our bodies (mentally, physically, emotionally or spiritually) affects our health. It seems reasonable to me that we then must look at all those things and change what isn’t working.

Who’s Trying a Lectin-Free Diet?

Posted March 27th, 2011 by

Are you on a lectin-free diet?  Trade notes on this dietary intervention at PatientsLikeMe, where more than 120,000 patients are sharing their experiences with treatments, supplements, lifestyle modifications and more.

But first, let’s talk about lectins, which are sugar-binding proteins that mimic insulin. Lectins bind to carbohydrates and various proteins, causing inflammation. As a result, they have been linked with autoimmune disorders such as IBS, Crohn’s disease and fibromyalgia.  To help fight this inflammatory process, a lectin-free diet restricts certain things like grains, nightshades (i.e. peppers, tomatoes, potatoes), legumes (i.e. beans) and some starches.  While most foods contain some amount of lectins, these food groups are considered the “worst offenders.”

What kinds of data points can you share about a lectin-free diet at PatientsLikeMe?  Thanks to our unique data-sharing platform, you can share detailed information on this diet’s effectiveness, side effects, cost and more.  You can also offer freeform tips and advice to others considering the diet and report what health condition(s) you are attempting to treat.   Whether you’ve found a lectin-free diet helpful in controlling inflammation or you’ve discontinued it for various reasons, your story will provide valuable insight to those who are searching for answers.


Have you tried a lectin-free dietJoin PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange advice and support, research common treatments and learn from other patients like you.

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