5 posts tagged “alternative medicine”

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.


Probiotic Users: Have You Experienced AccuFlora Side Effects?

Posted January 15th, 2011 by

At PatientsLikeMe, where more than 115,000 patients are sharing their experiences with prescription drugs, supplements and more, 20 patients report taking the probiotic AccuFlora while zero patients report experiencing AccuFlora side effects.  In addition, zero patients report discontinuing the supplement as a result of AccuFlora side effects.  The seven patients who have stopped taking AccuFlora list reasons such as expense or “it didn’t seem to work.”  (See the AccuFlora treatment report for more details.)

What exactly is a probiotic?  Falling within the realm of complementary and alternative medicine (CAM), a probiotic is an over-the-counter dietary supplement containing a form of “friendly bacteria” that may aid digestion, inhibit potentially harmful bacteria and support the intestinal tract.  In the case of AccuFlora, the live microorganism or “good bacteria” used is acidophilus, one of several bacteria used in the production of yogurt. 124 patients report taking some type or brand of acidophilus at PatientsLikeMe, and the only reported side effect amongst all of them is acid reflux (1 patient).

Now that we’ve addressed AccuFlora side effects, what else do patients have to say about this brand of probiotic?  Among other reasons, patients report taking AccuFlora for general health, bowel problems, diarrhea and irritable bowel syndrome (IBS).  The most commonly reported dosage is “daily,” the most commonly reported duration is “2 years or more,” and the most commonly reported cost is “under $25.”  From the four patient evaluations submitted for AccuFlora, we can also see that all four patients ranked the supplement as “moderate” or “major” in its effectiveness.

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