Part 2 of Fox5NY’s Lyme & Reason–Watch it here
Fox5NY follows up on last summer’s groundbreaking LYME & REASON: THE CAUSE & CONSEQUENCE OF LYME DISEASE.
Part two, “The Voices of Change” focuses on the use of social media as a tool to inform and open the door to change on the Lyme disease front, and how patients, advocates, physicians and others are moving the conversation forward.
The 20-minute special report includes interviews with LymeDisease.org’s Lorraine Johnson, neurologist Elena Frid, MD, researcher Dr. Kim Lewis, patient advocate Eva Haughie, and TV personality/Lyme patient Yolanda Hadid, among others.
View Part One of “Lyme and Reason” here.
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There are has a lot of problems with lyme. Besides poor treatment for known lyme there is also a totally lack of knowledge to diagnose lyme. I had seen doctors since 1998 due to all (besides physicals) lyme symptoms. Was told either don’t know why having a very sore throat or arthritis and cough would eventually stop. Was also on short term antibiotics (never more then 10days) about 4 or 5 times since 1998 due to pustules that would not heal. Also scleroderma on hands since 1998. The worst was being on psych units 7 times since 2001 with lots of anger/anxiety/depression/suicidal and being hypervigilant. So when I researched the awful symptoms in early 2015 I knew I had lyme (I looked at my symptoms history/got copy of medical records. I wrote out all this out. Doctor wrote “untreated mental illness initially, other doctors followed by adding “delusional, somatization, and convertion disorders. So I guess you can pick do I have chronic lyme from being officially untreated or do I qualify for post lyme syndrome. To cope I have written my battle till being diagnosed by an LLMD. By the way in 2011 did have a rash but it was not CDC accepted rash and was told to have shingles. Also had flu symptoms/back pain. What is wrong with doctors: how can a person with temperatures in the 93’s, 94’s, 95,s, some 96’s” be seen as having stable vitals. I am not a doctor and I know there is something wrong with this picture.
When I researched I learned the following:
Some people say “you can live with lyme”. Yes you will till you die sooner as it progresses. It does not go away and sooner or later you will die and most likely in horrible pain. People are not aware that it is a progressive disease.
Doctors rely on the lyme test for diagnosis; the CDC recommendation to treat without lab confirmation is not known to doctors. Hell the CDC does not want to share that knowledge since they do not want it reported either. The only ones counted are the ones that are acknowledged by the 2 tier testing.
Many people have lyme and do not know it since it is not even considered due to poor knowledge by doctors of possible lyme symptoms.
Just since my awareness of this horrific disease I know of 3 (possible 4 ) cases of lyme around me. My brother in law most likely has lyme, He was treated for a later case of lyme in early 2000’s. Several years ago needed a shunt in his head, difficulty with walking, now unable. No longer able to have awareness/memory and being in a lot of pain. Currently waiting to die. I send a letter to a doctor that had treated him, never got an answer either because this disease does not exist.
A client that I work with has Lewy body and has many symptoms of lyme (knee pain/scleroderma/hair loss/cold body/90% hallucinations/inability to walk). Again this is not possible as chronic lyme does not exist.
I have a co-worker that thinks she also has lyme. Was diagnosed as having chronic fatigue, fibromyalgia. Again totally no insight by doctors that it could have been lyme.
I also think there is a 8 year old that is struggling with lyme. After having gone fishing he needed a liver transplant immediately. Doctors are diminishing the possibility of being lyme. Why because even infectious disease doctors (yes lyme is an infectious disease) totally accept the CDC guidelines and do not keep up with changes or knowledge of new lyme variations/lyme symptoms.
A peer in our support group had been diagnosed with lyme and was only given 2 weeks of antibiotics. Infectious disease doctor told her it was enough. Guess what she is now considered post lyme syndrome.
I have in the past been respectful to doctors but no longer can. When I heard the anchor state to contact your doctor and do not rely on the internet I laughed because: DOCTORS ARE UNAWARE OF LYME SYMPTOMS.
YES I STARTED WITH GOOGLE “DISEASE BASED ON SYMPTOMS”. It saved my life for one year now but it does not look too promising.
WHAT NEEDS TO BE DONE. ALL PERSONS WITH LYME and people who are aware of this happening to send MESSAGES TO THE CDC. MAYBE IF ALL CONTACT THEM IT WILL CRASH THEIR SITE.
Another thing is to do the same on LYME day in the late spring so that the CDC wakes up.