KPFA.org Home
Support KPFA
Flashpoints - January 22, 2014 at 5:00pm

Flashpoints, for January 22, 2014 - 5:00pm

Click to Play:

Download this clip (mp3, 10.28 megabytes)
Play this clip in your Computer's media player

More from this show: About the Show | Archives of this Show | Playlists from this Show

Playlist for this Program:

ArtistSongAlbumLabel
Show StartTalk
MorcheebaFace of DangerHead Up HIghg pias

Comments

I was finally diagnosed with

I was finally diagnosed with chronic neurologic Lyme disease after 16 years of symptoms in 2011. Like Amy Tan, I was told I might have early stage MS years before the Lyme diagnosis. I have been on oral antibiotics for two years, but they are not helping. This is a public health catastrophe. When is society going to wake up????

Brian, 27 in Berkeley here.

Brian, 27 in Berkeley here. I have the exact same experience as Amy. I am an MBA student at Berkeley Haas and also work in San Francisco. It has been a nightmare.

Thanks for presenting!

Thanks you for airing this

Thanks you for airing this show. Thank you Amy Tan and Dr. Harris for speaking up for those who are suffering.

Thank you to Amy Tan and Dr.

Thank you to Amy Tan and Dr. Steven Harris for your continued work to make much needed change in the lyme community. You both have been working diligently for many years in the lyme arena.
Keep up the great work!

I got Lymes the summer of

I got Lymes the summer of 2013. I had the bulls eye. Was given the blood test. One positive, one negative so doctors said I didn`t have Lyme. I was so sick that I lost one of my jobs that required standing. Most days when able home I had to rest, it got to the point I could hardly have a conversation, drive or anything really. Finally went to a specialist and had a picc line. Even then the doc said no such thing as Chronic Lyme and that I wasn`t as sick as some of other patients with different illnesses. I still have chronic joint pain and some brain fog. I can`t believe that the medical field is so unwilling to acknowledge this for what it truly is. Devastating.

Finally able to listen to Dr.

Finally able to listen to Dr. H. I just cried. NOt even sure why. I always felt hope when I saw him in his office. It was difficult for me to listen to him due to neuro lyme and something else in the sound system.

Wondering if I have gone too long now without treatment to get better. I sure hope not.

Hi. Surprised I was able to

Hi. Surprised I was able to take in what Amy Tan said as I am usually not able to take in more than 1 to 3 sentences on a good day due to lyme disease.

I plan on going back to listen to Dr. H. I miss him. I am currently living in AZ and have not had the funds or health to get to CA to see Dr. H. Even if I were to see him, I would not have the out of pocket money needed to pay for treatment.

I came down too sick to work in 2001. Finally tested with igenex labs in 2002. Went to see Dr. H in 2003. Moved to AZ in 2005 as I thought family were going to help but they became part of the problem instead of help.

Having funds to move and get treatment is a big obstacle. Hoping to read what others have written when able. Bedridden for the most part. Use power chair for short distances.

I had neuro Lyme so bad that

I had neuro Lyme so bad that I was paralyzed, sick as a dog, I pulled the deer tick off of me and I was also a RN in the hospital that was treating me and the docs still tried to tell me I couldn't have Lyme. I'd like to know what's going on with doctors denying Lyme diagnosis and treatment? I almost died! I'm now left with Transverse Myelitis. Thanks doctors, you were all such great help. I can't work as a nurse anymore, I'm now on disability. I'm very angry that this is being ignored by doctors.

Thank you for this show and

Thank you for this show and series. I have been diagnosed with Lyme this past year after over 10 years of living with Multiple Chemical Sensitivity, Fibromyalgia and BiPolar. I am an avid camper having used the wilderness as a way to heal from early trauma. Years ago I got a negative on the Western Blot test that Kaiser gives. I have suspected that I had lyme but most of the lyme focused doctors charge a lot and do not take most insurance much less medicare/medical. I had finally found a Lyme literate doctor in Napa, CA, Dr. Hynote, but she died in December of lyme related treatment. Amy Tan acknowledged that there are many that can't afford doctors. I would like to hear from people who are working class or poor and from people of color (I am mixed Latina/white) who deal with lyme. I loved the interview with Amy Tan but had one concern, when she recommended using pesticide. Because lyme can increase the probability that someone will have Multiple Chemical Sensitivity (another illness with a complicated politcal struggle - see the film The Tomato Effect) (If you are reading this Dennis, I will loan it to you.) I am sad to see more toxins that make all of us sick but some of us extra sick being recommended.

Great show. Thank you Dennis

Great show. Thank you Dennis Bernstein, Amy Tan and Dr. Harris! My story is similar to Amy Tan's.

As someone who has had an

As someone who has had an identical experience to Ms. Tan's I took great comfort in hearing how well she is doing now even with all the lingering symptoms. This show was so insightful, on target and honest. I can't thank you enough for the great work and getting these two Lyme activists to put out the word on this health crisis. great work Mr. Bernstein .

Amy Tan's story is almost the

Amy Tan's story is almost the exact same thing that happened to my daughter. We even had the same conversations with her doctors. Thank you for putting on this interview and helping to raise awareness of Lyme disease in California.

I appreciate the level of

I appreciate the level of understanding on the part of the interviewer. This was a very helpful interview and puts Lyme disease in perspective. After 5 years with Lyme, I was treated with IV antibiotics for many months by Dr. Cichon of Tampa, Fla. Luckily for me, the treatment has so far worked and I am 90 percent well. For this I am very very grateful. I'd like to hear more about good health practices for people who are healing and trying to stay well.

This is a great show. You

This is a great show. You have provided a valuable public service by interviewing these two prominent and knowledgeable individuals.

Fabulous interview with such

Fabulous interview with such knowledgeable guests talking on Lyme disease. Thank you all!

My daughter suffered from

My daughter suffered from excruciating joint and nerve pain as well as the fatigue and neurological symptoms Amy Tan described. She went from being an outstanding student and athlete to being bedridden. We got found Dr. Harris after trying to get help from 32 other doctors and medical professionals, and he has saved her life. It has been a long, hard, expensive road, but she is getting better. Thank you for bringing attention to this terrible disease.

As a resident of New Jersey,

As a resident of New Jersey, I was fortunate to find a link to your program on Facebook. My daughter is being treated for Lyme, bartonella and babesia and is lucky to have found one of the experts in our state for treatment after MANY tries. As you may or may not know, New Jersey is one of the states with the greatest number of cases and the lack of lyme literate doctors in our state is a disgrace. We need for this epidemic to have a famous face or two, like a "poster child" so that the public will pay attention. There a several celebrities who are affected who would be great spokes people. Did you know that President Bush had lyme disease? Thank you for your show. My wish is that 60Minutes or Frontline takes on this topic to finally uncover why the Infectious Disease doctors, the CDC, insurance companies and Big Pharma have been reluctant to address this national medical disgrace.

Thank you, thank you, thank

Thank you, thank you, thank you for covering this increasingly relevant epidemic.

Thank you for the show. Lyme

Thank you for the show. Lyme and tickborn disease is huge and being ignored and misdiagnosed.I am a brain tumor survivor with lyme and two other tick diseases.I contracted lyme somewhere around the time my tumor surfaced,caused a huge quagmire of misdiagnosis, lost time ,money ,three years of work.We are still digging our way out of this mess. Our insurance said hah fat chance so 100k out of pocket later and 5 years I am slowly getting well. Brain surgery was a walk in the park compared to my journey through lyme! Your show will hopefully make a difference in the lives of others. Keep up the good work.

Dr Harris is one of my heros.

Dr Harris is one of my heros. He saved my life. He savesd my daughters life.

I have neurological LYME

I have neurological LYME DISEASE was diagnosed in 2012 after 10years of searching for answers.

8 years went by without my

8 years went by without my dx. I was diagnosed with Chronic Fatigue Syndrome within 6 months of the first blast of symptoms, which is really a name for a bunch of symptoms that cannot find a cause. I had to go out of my HMO network for help after 8 years of suffering. My symptoms screamed blatant Lyme and WAS told it was probably Lyme. But the tests negated it. The past 5 years have been trying to treat but my stomach cannot tolerate most meds and can't afford IV. I AM one of those "common folks" that can't afford treatment. It is ridiculous. I lost my job, my ability to be the mom I need to be to my 6 kids, and finally ability to drive, think, walk. Relapse upon relapse hits me and brings me down farther and farther into a black hole. The brain, nervous system, heart, stomach, joints and muscles, hearing...every system and every organ has been compromised. I am only one of millions. Thank you for speaking up about Lyme and the horrible treatment (or lack thereof) patients with Lyme get. It is truly shameful how ignorance has created a whole subset of sick people begging for help. Thanks to people like you who are trying to get the true information out.

What a well presented show on

What a well presented show on tick-borne illness. The facts discussed were sound and reflect the struggles that my family endures on a daily basis. All three of my children are in treatment for congenital Lyme disease; had I been diagnosed 17 years prior, our lives would be much different now. There is not one facet of daily life this disease does not touch. As a mother, watching your children struggle is horrifying. Lyme ruins lives. What will it take to stop the majority of doctors in this country from continuously parroting disinformation about Lyme? It is ONLY with working with an Lyme-Literate MD that we are slowing getting better. Thank you Amy Tan, Dr. Harris and Dennis Bernstein for bringing the truth to light about Lyme and co-infections. Please keep it coming!

Amy Tan is one of my heroes

Amy Tan is one of my heroes as well as one of my favorite authors. What a treat to hear her and her incredible understanding of and ability to explain this horrible disease!

I try to be an advocate for my fellow Lyme disease patients and am always grateful that good, and well-known people are willing to step up and speak out.

Thank you all so much!
Ann

Great show! from a 68 yo

Great show! from a 68 yo lymie in Minneapolis. Want older people to know it can mask as so many other conditions, so get to lyme-llierate doc, or even lyme-friendly. Could save your life!

I'm 68 yo,was misdiagnosed

I'm 68 yo,was misdiagnosed (chronic fatigue, fibromyalgia, arthritis, hearing loss, etc) for 9 yrs. before positive test for lyme. Failed conventional antibiotics (one almost killed me) so have switched to herbal antibiotics, many supplements -.all out of pocket. Live in HUD. BUT I've had a good long life! Fear for families with children, for younger adults. How long will CDC/NIH and gov't drag their heels?? are they in cahoots w/ insurance companies? This is so close to the HIV/AIDS epidemic and many may die before action by gov't.kicks in - what a crime!

Thank you for a great program

Thank you for a great program that summarized a complex issue! I look forward to more programs on the topic of Lyme and co-infections. Patients are the best educators for doctors and other health care providers, so keep educating everyone and the doctors will have to learn about it all too!

My story is that after

My story is that after getting bit by a mosquito I had flu like symptoms , after five days I couldn't walk. I had a positive test for Lyme disease in 2013. Even after a positive test, and I started to have seizures , I saw over 30 doctors. I was told that we do not have Lyme in Illinois, and yes I did have Lyme but cured myself.

I was told I had Ms, Lupus, CFS, fibro, but not Lyme disease. In a year time without proper treatment I lost my ability to drive, lost my job, and then loss use of my legs. For the last four months I have been bedridden , my family finding me on the floor more times than not , after falling and hitting my head.

Finally a doctor here, a LLMD saw me, and ran the right tests. The doctor found out that not only did I have Lyme, but I have mycoplasma, and many other co infections.

I feel that something needs to be done, many people are dying. I was told I was crazy when I did not get well. Thank you for this radio broadcast, we need all the exposure we can get.

Dennis, Amy, and Dr.

Dennis, Amy, and Dr. Harris,

Thank you for today's show on lyme disease.

I've had chronic lyme disease 44 yrs now; 35 yrs. MISDIAGNOSED by 40-50 drs; UNACCEPTABLE!

I believed every dr. I saw during my early years; now I investigate these diagnosis/symptoms vs. relying on drs. being correct!

Looking forward to future shows; especially one on the HUGE LYME PATIENT VICTORY TODAY!

https://www.facebook.com/permalink.php?story_fbid=10152147330264817&id=1...

Thank you all, BettyG, Iowa lyme activist /patient

Thank you so much for this

Thank you so much for this show, our whole family has lyme and a myriad of other infections..Erlichia, Babesia..etc. Was so sick for so long until we found a doctor who asked for the right tests. A year on antibiotics and thousands of dollars on all kinds of other meds and supplements. Still on the long road back to somewhere near as healthy as we were. It was a pleasure to listen to your show today!

The following petition

The following petition provides evidence to suggest that Lyme disease has been intentionally mishandled. The petition has generated 16,429 signatures and 190 pages of heart wrenching stories from disabled Lyme patients across the globe.

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

https://www.change.org/petitions/the-u-s-senate-calling-for-a-congressio...

Carl Tuttle
Hudson, NH

Listen Live:

Listen Live
     (64K stereo mp3)

KPFA 94.1 FM (24k mp3)

KPFB 89.3 FM (16k mp3)

iPhone: Public Radio App

Android: TuneIn Radio App

WebOS: Public Radio App

Click Here For Help Listening

KPFA Video Channel