Doctor Oz discusses Lyme disease and the movie Under Our Skin

It is my understanding that Dr. Oz's radio show about Lyme and the movie Under My Skin will be take place on Wednesday, Nov. 26th. I, too, am anxious for it since I suffer from chronic Lyme, and my daughter and son are both being treated for Lyme, as well. I'm very excited that this topic is being talked about more and more. I'm hopeful that this discussion will continue beyond the radio show to Oprah's tv show! Best wishes to you and your husband.

I am soo excited to hear the discussion. I am 18 and have suffered from chronic lyme disease for a while now. i am not in school anymore but its so exciting to see how this is growing and more people are becoming more informed about it. I am from the original lyme state its-self. The movie was so moving and it described everything I was feeling to my family without me trying to tell them.

I am very interested to listen in to Dr. Oz on his Lyme Disease radio show. Hope I don't miss it! I had Lyme for 14 years before getting a proper diagnosis. Unfortunately, by that time the bacteria had a thorough hold of my Neurological system. I've been in treatment now for six years and, in the hands of the right doctor, have improved greatly. But many residual problems/symptoms will most likely remain with me for life. Currently, I am recovering from eye surgery to remove rapidly progressing cataracts in both eyes. I am only 49.

Please don't let this discourage anyone from seeking treatment. If I had received treatment early on in the disease, I would of had an excellent chance of complete recovery. But all the physicians with whom I sought care refused to consider or even test for Lyme Disease because I lived in California and "California does not have Lyme Disease." (Keep in mind, now, that I came to my very first doctor visit after several weeks of not being able to eat or sleep, urine incontinence, muscle spasms, joint pain, headaches, fainting/black outs, extreme fatigue (to make up the bed, I took about 20 minutes to get one side "done", rested for 30 to 40 minutes, then proceeded to attempt to fix the opposite side of the bed). And, the large red rash on the back of my upper forearm that was warm to the touch was considered insignificant to the severe flu-like illness that just hit me out of nowhere.

Before this illness, I was the picture of health. The only times I needed to see a physician was for my OB/GYN care.

While the doctors did not test me for Lyme Disease, they did test for what must have been everything else: MS, ALS, Lupus, Sjorgens, HIV, STDs, Rheumatoid Arthritis, Hepatitis, etc. Complete work ups/x-rays/cardio tests looking for a reason to explain the irritable bowel/stomach pain, joint pain, "chest" pain, heart palpitations, tachycardia, etc. Finally, after ten years, one doctor realized that no one had ever looked at my brain despite my excruciating headaches, so ordered a CT and MRI. When they returned negative, that doctor did not know what else to do. But, later, once the vertigo added to my list of symptoms, I had extensive testing of my inner ear functions showing nerve pathology, and also a Tilt Table Test which confirmed that my Neurally Mediated Hypotension was also indeed real.

To each and everyone of these providers, I mentioned the initial "bug bite" and rash. All doctors, including the head of the Rheumatology department at UCSD, brushed off that symptom as insignificant. In fact, the UCSD doctor scolded me (after a five minute exam) for "wasting their time" as they had real patients to see, and suggested I see a Psychiatrist. (Had this doctor read my medical records, he would have seen that I had been under the care of a psychiatrist since shortly after the beginning of this illness.)

I eagerly await the Lyme broadcast. The Lyme community has been hoping to get Lyme this type of "press" for many years. The bacteria that causes Lyme is smart. If we're going to beat this thing, we've got to be smarter. Thank you Oprah and Dr. Oz for helping us get smarter.

I am so excited and pleased that finally someone like Dr. Oz is going to talk about Lyme Disease. This Disease is effecting so many people and so many people don't realize this is probably what they have. Currently the lyme disease tests diagnoise 50% of the time. So many people are going around with lyme disease and think they don't have it. They can't figure out what is wrong with them. So the more people are talking about it and hopefully better tests will be made avaible soon so not that many people will have their lives turned upside down like it has in our family. My husband has lymes for over 10 years and we just figured it out this year. He is in the process of getting help now.

Mary Ellen Furman

THANK YOU DR. OZ!! I am going to listen to the show tonight. I am so happy a doctor, with a reputation as yours, is recognizing chronic Lyme disease. THANKS THANKS THANKS!!! Now can you also do something on OPrah? You are brilliant and I am a big fan! I can't wait to hear the show tonight.

You can get a 3day free trial of sirius radio on your computer.

This is a copy of the letter I just emailed. Dr. Oz asked for listeners to write in and tell him whether they have been diagnosed/treated for chronic lyme disease, and whether treatment has helped. I'm not sure were he wanted us to write this, so I'm copying this letter to this discussion forum as well. Here it is:

Dr. Oz,

I just finished listening to your show on Lyme Disease. You asked for listeners to email you if they have chronic lyme disease. (I'm not sure if this is the form that you wanted us to use).

Anyway, I have had chronic lyme for 8 years and have been treated with several years of oral antibiotics, a few months of intramuscular bicillin injections, and 6 weeks of IV Rocephin (with breaks in between). I think that each time I was inadequately treated in duration/dosage, allowing the bacteria to entrench deeper into my tissues (and convert to the cystic form) in order to evade the antibiotics. The inadequate treatments have been dictated by whether or not the insurance will pay. So, I remain ill.

After all these treatments, I still have positive Western blots from Igenex, as well as a positive antigen flow cytometry test from Central Florida Research Labs. This is proof to me that the bacteria can survive inadequate treatment.

Please read Pamela Weintraub's book, "Cure Unknown", explaining the politics of lyme disease. It is an excellent book.

As far as it being passed on through pregnancy, Karen Vanderhoof-Forschner (LDF) sent her deceased child's remains to be researched, and they found lyme spirochetes in his tissues. I myself have had miscarriages which I believe are a result of the lyme.

In addition to antibiotics, I have received antivirals, in case there was a CFS component to my disease, which has given me no improvement.

There is a bill (HR-741) that has been proposed to fund more lyme disease research, but this has been knocked down numerous times in congress, mainly by Frank Pallone (NJ). This has become a very political disease...all the while, we suffer.

Anyway, thank you so much for doing this radio show and raising awareness of chronic lyme disease.

Thank you so much, Dr. Oz, for doing a show on Lyme disease.

We are desperate for attention to this illness. There is so much information available that would make our case that Lyme can be chronic and disabling and that we need help, but we are all too sick to consistently work at publicizing it.

Please read Pam Weintraub's book Cure Unknown. Just as Under Our Skin is compelling and a work of art, Pam's Weintraub's book reads like a mystery while reporting in detail on most of the scientific research on this illness. Please read, too, Coco Ballantyne's article on Lyme disease in Nature Medicine. Please talk with Dr. Brian Fallon who heads the research program in Chronic Lyme Disease at your own hospital, Columbia Presbyterian. Please speak with Pat Smith of the Lyme Disease Association

Please listen to the young woman speaking at a funeral of a Lyme patient in Under Our Skin saying that the death was unnecessary. I don't know whether anyone told you, but she herself died from Lyme complications just a few weeks ago..

I am sure that if you really delve into the science surrounding this issue, you will agree that there is much that is unanswered and that much more research is needed. I'm sure that if you speak with enough people with persistent Lyme symptoms you will believe in the efficacy of long term antibiotics to help manage the illness.

At this point, having been so ill for so many years I am no longer too proud to beg for help in getting the word out about Lyme disease.. I have seen too many wonderful lives destroyed or ended by this illness, By the time we all knew that our Lyme is chronic, we were usually much too ill to make enough noise to be heard above the voices of the "experts" who say we don't exist.

Even when the Attorney General of Connecticut found that these "experts" had considerable conflicts of interest, we were too sick to get the publicity needed . The elements are all there to turn the tide that has worked against so many desperately ill people. But we need help in pulling the elements together, telling our story in the most public way.

Thank you again for what you've done so far.

Dr. Oz,

I listened to the show tonight. Thanks so much for having an open mind. It is one thing to suffer pain and all the other disturbing and mysterious symptoms but what makes it all worse, when you lose the most hope is when the very doctors who are supposed to help you say there is nothing wrong with you or there is nothing they can do for you. You gave us all hope tonight. Talking about this, bringing awareness to the general population and to the mainstream medical community. Thank you. Now we just need more research and we need the IDSA to come up with new guidelines!

To everyone else -- I think Dr. Oz wants you to email him -- here is the link to email him below:

CONTACT DR. OZ: https://www.oprah.com/plugform.jsp?plugId=495

Thanks again

I have tried unsuccessfully to post this letter on the contact Dr. Oz link.
CONTACT DR. OZ: https://www.oprah.com/plugform.jsp?plugId=495

Every time I hit submit, there is an internal server error!!!

Hence, I post my letter here and will continue to attempt to post it on the required link.

Hannah Jen

_______

Dear Dr. Oz,

I am a 58-year-old divorced woman with 3 adult children, 10 grandchildren and a 21-year history of Chronic Lyme. I have a BA degree and have worked in the social justice field and as a trainer and workshop leader on creativity and personal growth. I¿m also an actor and writer. Chronic Lyme disease has radically changed my life.

I was diagnosed in 1987 with the classic bulls-eye rash and off the charts test results, according to the CDC. I was the first reported case in Ohio. Karen Vanderhoof-Forschner of the LDF guided me with information for my doctors who knew nothing about treatment of this disease. Despite that guidance, I was under-treated.

My symptoms were neurological: extreme fatigue, perception/memory problems, depression, panic and joint pain. I have lesions on the frontal lobes of my brain, which increase in size and number, degeneration of cervical and lumbar areas of my spine, glaucoma, premature cataracts and dental and eye infections.

I¿ve lost my marriage, home, career and all assets due to this disease and inadequate treatment. In 2001, I was forced to declare bankruptcy and I have been on SSDI since 2003.

The infectious disease physicians tell me there is no such thing as chronic Lyme disease; the Lyme Literate doctors have been unsuccessful in my treatment. After failed attempts with the allopathic medical community, I have turned to the alternative medical community and my personal spiritual practices and beliefs for help. Acupuncture keeps me relatively pain free. Meditation has alleviated my depression. Nutrition and supplements help. Yet, I am not cured.

Dr. Oz, like so many others with this disease, I have suffered for too long. Life has been a fire-walk of not knowing what each day will bring in terms of symptoms and challenges. Yet, I remain positive and live each moment to the fullest. Lyme disease has taught me much, but it has been a severe teacher. My positive attitude, healthy diet and belief system have all been instrumental in maintaining some degree of health. Yet, as I grow older, my reserves of energy are depleted and it becomes harder to do the things I love and to supplement my meager disability income.

If you need any further information, please contact me. Anything I can do to raise awareness would bring me joy.

Thank you for addressing Lyme disease!

With Much Gratitude,
Jennifer Sloane

Okay. I was able to shorten my post on the Dr. Oz email link and I BELIEVE it went through!
Apologies to all for my loooooooong winded personal letter posted above . . .

With Gratitude,
Hannah Jen

Dear Dr. Oz,

I cannot begin to express my gratitude to you for addressing Chronic Lyme Disease. I and too many others I know have suffered long and brutally with consequences of Lyme and inability of "if you can't see it on a slide, it doesn't exist" medicine to deal with it. Physicians -- people we were taught to trust and believe in -- tell us there's nothing wrong, and the ones who do believe and try to treat us get punished and lose their licenses to practice. It's a crime against so many very ill people.

A long-time business owner, active volunteer, wife and mother, I can now barely function because of pain, exhaustion, "brainfog" and, most recently, vision problems that may be Lyme-induced. Since I contracted Lyme almost 14 years ago, I've lost my health, my ability to work, my husband and his extended family which had become mine, and the ability to do anything productive more than 2-3 hours a day. I long ago gave up on a "cure" and have used both traditional and alternative treatments just to help manage symptoms. Even there, a few months ago Medicare (I am on SSDI) stopped covering a treatment that was very helpful to me, and I can't afford it on my own.

Alone, very ill, and in my 60s, I feel my life is pretty much over, but it would be a miracle to see this horrible disease validated and to have credibility, support and treatment given to those living out this nightmare.

Listening to the show was a wonderfully hopeful and affirming experience. For an hour, I felt "real." Thank you again.

I just want to express my deep gratitude to Dr. Oz and Oprah for putting this on the air. I suffer from chronic Lyme and find the difficulty getting needed treatment threatening my ability to work and to live a meaningful, engaged life. I am lucky right now to have recovered enough, with antibiotics, to have the use of my brain. There are so many out there who cannot even think clearly anymore. And of course there are many children suffering from this illness. I feel this issue is so important to people throughout the northern hemisphere of the world, where Lyme is a growing epidemic. Please please devote time on TV to addressing this issue!!!! The suffering you could help reduce, the awareness you could help raise presents such a wonderful opportunity to continue practicing the deep compassion that you have shown throughout your careers Dr. Oz and Oprah, that is). THANK YOU!!!!!!!!!!!1

I have had lyme complex (lyme plus coinfections-Babesia, Bartonella & Ehrlichia) for at least 28 years. I unknowingly passed it in utero to all my children. We also live in a very endemic area and regularly picked ticks off our kids for years not realizing they were probibly being infected over and over again with lyme & coinfections. I have seven children. My entire family is ill with lyme. It has affected us in ways I could never have imagined . I was so deathly ill from this disease and the inability to find a proper diagnoses for SO many years....going to many specialists who never figured it out.....that I was totally bedridden and disabled until I was finally diagnosed three years ago.

I have fought tooth and nail to get better and help my children get better. I use all alternative protocols since IV antibiotics are out of the question financially for us. I am now fully functioning again but still have an uphill battle. I believe I will fight this the rest of my life.

Had I not been diagnosed I truely believe I would not be here now. This disease disables and kills. Most people don`t realize that. I run a small support group in my area to help get people informed and to encourage and help others that have recently been diagnosed. This disease also disables people emtionally and financially. It can be truely devestating. Especially because we are treated as if we are insane. We are NOT crazy ! And this is NOT all in our heads !

I went from being a Super Mom that could not be stopped to a Mom who couldn`t even hold her babies because it was too painful and exhausting. I know WAY too many Moms in the same position ! There are SO many folks out there that have this disease and nobody wants to talk about it. THANK YOU for talking about it ! FINALLY we might get the attention needed to get REAL research and REAL help for this devestating disease. We are NOT a small minority ! I wish you could see how many folks I know with this. And I meet more every day. And I am a stay at home Mom ....I don`t even get out much LOL ! But it is truely everywhere. You just need to know what to look for. LEARN what Lyme & coinfections LOOK like ! Learn what symptoms to look for !

Thank you again for paying attention to this . The lyme community SO appreciates it !

Thank you for giving this disease and this documentory the attention it so needs ! The public NEEDS to know about this so folks like us will not be ill and searching for years and years for a diagnoses.

I was recently finally dx with lyme after 8 yrs and 18 specialists, i'm 42.

I passed it on to my 3 children and hubby as I am CERTAIN they have not been biten by ticks.

This is FYI but lichen sclerusus is a dermatological manifestation of lyme...look it up and it is along with morphea so if a person has lichen s especially in the genital area do the igenex western blot to test for lyme.

I'm glad

dr oz is giving this disease some attention.thank you.