At the end he asks for letters from us telling him if we had long term antibiotic treatment and were cured by it.
Well, he's still learning, so we need to educate him that even those of us who were not cured were helped by long term antibiotics. We need more research so we can have a cure.
This is a huge opportunity for us. With Dr. Oz's popularity, winning him over could be the tipping point for us. Please, please write to him so he gets an idea of how many chronic Lyme patients there are. https://www.oprah.com/plugform.jsp?plugId=495&referer=
Thanks, Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
| IP: Logged |
Thank you for this post! I've been wondering how to hear the entire show!
I haven't listened to it yet, but by reading the notes that someone was so sweet to post; his interest is very encouraging but I did notice that there seemed to be some indication that he is wondering if Chronic Lyme exists or if long term antibiotics work and are they really neccesary.
I will listened to the whole show. I have e-mailed him and Oprah several times.
I PRAY THAT HIM AND OPRAH WILL BE FLOODED WITH LETTERS AND E-MAILS TO THE POINT THAT THEY HAVE TO DO SOMETHING MORE!
Thanks again!
Posts: 351 | From Georgia | Registered: Feb 2008
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
great audio
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
I am writing in response to your recent radio show re: chronic Lyme disease. I understand you asked for listeners to write in and let you know whether they were helped by long term antibiotics. I am convinced that if I was not on long term antibiotics I would be dead or severely debilitated in a nursing home.
I have been dealing with acute Chronic Lyme for 5 + years - I have probably had it in my system much longer, but became severely ill 5 years ago. When I was diagnosed the disease was in every system of my body - including my brain and nervous system. While not a cure, long term antibiotics definitely allowed me to function and have some semblance of a normal life.
When I tried to stop treatment about a year and a half ago, my symptoms returned with a vengeance. It took about 6 months for me to become housebound and another 6 months after restarting antibiotics to approximate my previous level of functioning.
As Jenny McCarthy has said, her son is her science. Well, I guess myself, and the thousands of others with chronic lyme, are our own science. Long term antibiotics are not a cure, I actually have a very well rounded treatment program combining western, European, and Chinese medicine, as well as nutrition.
However, right now, for me ,being on antibiotics to control this disease is essential. Without them I would have no quality of life whatsoever.
I truly believe science will soon catch up with what we in the Lyme disease community have known for years. I pray daily for a cure for this illness and for those who are suffering who don't have the financial resources to treat lyme disease, since insurance frequently doesn't cover treatment.
If you are interested in learning more about chronic lyme, I highly suggest you read the book "Cure Unknown" by Pamela Weintraub, a well respected science writer who herself (and her family) have dealt with chronic Lyme. An interview with Pamela would also make a great follow-up to your recent radio show.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
| IP: Logged |
joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Thanks Ellen! I just wrote to him.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
| IP: Logged |
posted
for those who did not see Under Our Skin and will not get to see it..please listen to the radio show with Dr. Oz...but if you get the movie let me tell you...all you have to do is show it to the people in your life who can't understand what you are going through...i did and now how different they are and can now see what my husband and I are living every day for almost eight years...please listen...
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
| IP: Logged |
I am a chronic Lyme Patient. So Is my daugher who is 17. She has been diagnosed with Lyme and Bartonella or mycoplasma.
We are both on the Marshall Protocol which is a different protocol than simply long term antibiotics. It implements antibiotics but at much lower doses. It is a protocol used to treat cell wall deficient bacterium which is one of the major issues in Bb infections. Cell wall deficient bacterium are a class of bacterium difficult to erradicate from the body. It is best researched at www.marshallprotocol.com.
We are in the first phase and will be going into the second phase over the next month.
I had a bulls eye rash in 1999 that was diagnosed as a spider bite. From there my health deteriorated over the years. In 2001-2003 were the worst years of my life and i was only 32-34 years old. The prime of my life, right?! Not exactly. I spent most weeks able to put in about 10-15 hours of work over a 7 day work week. I slept 14-16 hours a day. I would wake to get the kids out the door for school, go back to bed, wake before they got home so they wouldnt see me sleeping all day, get their homework done and dinner fed, ready for bed and then back to bed again, all the while feeling like I wouldnt make it one more step.
I have struggled with brain fog, cognitive issues, joint pain, head aches, peripheral neuropathy, facial pain, neck pain, costochondritis, heart palpitations, vision disturbances, excessive floaters, gi issues, dry eyes, bilateral/temporary bells palsy, lymphnode swelling, fatigure, muscle spasms/twitching, that have all waxed and waned.
My daughter has vomitting spells, vision disturbances, headaches, neck pain, has been diagnosed with tourettes and bi-polar and was having hallucinations at the age of 9.
The worst part, I thought, was getting diagnosed. Every doctor said everything was fine. I was screend for MS, Lupus; diagnosed with Fibromyalgia and Chronic Fatigue and of course psychosomatic over and over and over. i spent so many hours and so much time going to counelsing and trying to figure out what was wrong in my head, willing to accept that something reallly was wrong with me mentally, so I could FIX IT. Then when I finally got a diagnosis I was so excited and relieved, until I tried to get treatment.
I just cannot understand how something like AIDS can be accepted but something like a bacterial infection cannot? Between medical and political it has become so controversial and as a patient and a mother of a patient, all I want is the opportunity to have my health back, but more importantly, for my daugher to have the opportunity to experience health for she doesnt even know what normal feels like.
And that is the debacle of this disease.
Sincerely,
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
| IP: Logged |
posted
Folks - please be sure to read the Terms and Conditions at the bottom of the page for writing to Dr. Oz.
In essence, you are NOT writing directly to Dr. Oz. This information can be made completely public without your consent and also CHANGED to suit the Oprah show.
Please read carefully.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[rant]](graemlins/rant.gif)
Printer-friendly view of this topic