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

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.

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8 thoughts on “Searching for a Diagnosis: An Interview with Lyme Disease Patient Pampe”

  1. Pampe has been awesome in helping me get information for a LD diagnosis. She has a great wealth of information. There’s a big problem finding a LLMD to get treatment. I feel that most doctors are treating each individual symptom instead of the underlying cause.
    With Pampe’s help I feel that I will get better. It’s a long journey, but I’m wanting to get better instead of getting worse on a daily basis.
    Thanks Pampe for all your help and info!

  2. I have PD. I also had Lyme. which was cured with Chinese
    herbs. It did reoccur once. I am wondering if there is any
    connection. My LD diagnosis was fast with immediate and
    definative bulls eye. The PD may have already begun but who
    knows since that also has a difficult diagnosis

  3. My gp did the test but it came back negative, so he totally dismissed that I could have lyme disease,(don’t have lyme in Herefordshire) and yes 12 month later am having classic lyme symptoms. plucking up the courage to go back, but what do I do if he dose not want to know

  4. I’M SO HAPPY I FOUND PAMPE! I’ve been NOT taken care of by the western medical community since I woke up one morning 14+ years ago unable to walk (felt like I was standing on water balloons), had extreme brain fog + MANY other symptoms that came from “nowhere.”
    Recently, I’ve relocated to the WA state beach in hopes that the oxygen-saturated air will help my breathing (I’ve always felt like I was suffocating since the onset of “fibro” in 2001.) I love coastal climate.
    The greatest thing about this move is that I’ve reconnected with the very first chiropractor I ever went to (some 23 years ago!!!) He is now a naturopath and a Dr. of Chinese Medicine as well as still an excellent, caring chiropractor. He doesn’t accept “fibromyalgia” as any sort of diagnosis for anybody; he is guessing I have Lyme. My 2nd appt with him is in a week. I don’t remember if I’ve ever been tested but I know I’ve never been treated.
    I’m excited! I totally agree with Pampe: “The main obstacle to an appropriate diagnosis of Lyme disease for me was the lack of knowledge in the traditional Western Medical System.”

  5. I was tested for Lyme Disease when I was first sick. I received a negative test result.
    How did you finally arrive at a diagnosis of Lyme Disease and can a test be done retrospectively?

  6. I’m hoping to get many responses to my question from oh so many of us who suffer with Lyme Disease.
    Do you have what I call “violent Parkinson-like tremors” that come on almost without any notice, are severe and debilitating and might last 5 min or longer?

  7. It says Pampe is no longer active on PatientsLikeMe. 🙁 That’s really quite crappy !!! Wherever she is I hope she is doing wonderful. What an amazing woman, I truly look up to her for her knowledge, honesty and compassion!

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