Refuting CDC’s inaccurate Lyme statements–point by point
Huffington Post, August 16, 2016
by Dana Parish
On June 30, Fox 5 New York aired a highly-rated thirty-minute TV special about Lyme disease called “Lyme and Reason,“ in which I was interviewed with my doctor, Yale-trained internist and preeminent Lyme specialist, Steven Phillips, MD. You can watch our segment here.
Also interviewed was the CDC’s Paul Mead, MD, Chief of Epidemiology and Surveillance Activity of the Bacterial Diseases Branch of the Centers for Disease Control and Prevention. You can watch that here.
Many patients and clinicians expressed outrage on social media regarding what they considered to be dangerous, misleading information offered by Mead, and pointed out the CDC’s pattern of giving preferential treatment to outdated IDSA Lyme guidelines instead of the more scientifically-supported, patient-centered ILADS guidelines.
Interestingly, the National Guidelines Clearinghouse, a federal database that provides treatment information to health care professionals and insurance companies, has removed the IDSA Lyme treatment guidelines from its website and only lists the ILADS guidelines.
To help chronic Lyme patients who feel that the CDC has once again turned its back on them, Phillips wrote a formal rebuttal to some of Mead’s statements and Fox 5 posted it on its Facebook page.
Fox invited Mead to comment further but that request remains “under review.”
- August 16, 2016 at 6:12 pm
We are blessed to have folks like Dr. Phillips advocating for us.
- August 23, 2016 at 10:42 am
Yes, thank you Dr. Phillips.
- August 17, 2016 at 5:46 pm
I was labeled as having untreated mental illness initilly. A few months later (as I told many drs and wrote out why I thought I had Lyme) was labeled as delusional, having convertion and somatization disorder.Vice president of Sanford agreed to meet with me. I had expectations. Just received a reply that they did all things right and consider the case closed Will go to my next step and demonstrate by various clinics and warn people with the controvertial diagnoses to ask question about their illness. I am pissed off and I am glad there are more persons expressing their frustrations and stories. I tried the local paper and they are not interested either.
- August 17, 2016 at 9:59 pm
Joyce, you are definitely not alone. My mother’s multiple physicians treated my mother like crap for decades. They ridiculed her other family members for even requesting that she be tested for Lyme Disease, despite her having grossly obvious Lyme Disease symptoms, such as swollen knees, extreme arthritis, heart palipatations, vision distubances, skin rashes, hot flashes, insomnia, anxiety, hearing loss, tinitus, vertigo, loss of consciousness, and a myriad of other symptoms. Plus she lived in a well-known “Lyme Disease hot zone”, Long Island, NY (But Lyme is actually everywhere). Then, when her organs began to fail, and her brain was ravaged by Lyme Disease and coinfections, her doctors labeled her Lyme Disease as “dementia” and/or “possible alzheimers”. (When I asked her doctors how they could absolutely diagnose dementia or alzheimers, they laughed and said they could “autopsy her brain”. I was, of course, shocked.) My mother died a slow, horrifying death after a lifetime of totaly unecessary and deeply inhumane suffering. I watched for YEARS as my mother’s doctors rolled their eyes, mocked and belittled my mother’s suffering, even in hospice. In hospice my mother was even accused of “not dying” and just the week prior to her death, hospice attempted to throw her out of their care. Then, when she died, hospice was surprised. There is no dignity with Lyme Disease or how Lyme patients are ostracized, misdiagnosed, ridiculed, and ignored.
I had my mother IgeneX tested and she was positive for Lyme and Ehrlichia, but not one physician would treat my mother, even if it was just to eleviate her intense suffering. Not one doctor. Not one physician would honor the very Oath they took to “do no harm”. They did a LOT of harm.
All this is extremely common with Lyme Disease sufferers…physicians look the other way, refuse to acknowledge, deny, refuse to even look at test results, claim ignorance, allow their patients to suffer, delay any possibility of prompt & early treatment, thus dishonoring their profession. People with Lyme Disease are committing suicide (self-euthanasia) all over the United States and the world, as their brains swell and they are told that they are “delusional”, mentally ill, faking illness and other extremely abusive ‘diagnosis’…this is so common that I personally know of a list of people who euthanized themselves because they had Lyme. I know of at least two or three people who were institutionalized because they were suffering from acute chronic, painful Lyme Disease. The ultimate torture is to have your body ravaged by a bacteria (and coinfections/viruses) and to be labeled ‘crazy’, shunned, and ignored to death. This is VERY common with Lyme Disease. We must talk about this until the Centers for Disease Control/ Infectious Disease Society of America/ entire medical community’s routine practice of claiming that a science-based raging bacterial illness is just “mental instability” is forever stopped. This must end. This is no different than the Salem Witch trials, except that today instead of burning, sufferers are ignored to death. Lyme Disease is pandemic, a global plague. Dont even bother with ‘Western Blot’ testing at your doctor’s office- that’s a scam, routinely usless and known to be wholly unreliable. Get IgeneX tested. Find a Lyme Literate MD and then save yourself. If youre not outraged by this plague, then you’re not paying attention.
- August 18, 2016 at 6:13 pm
Jillouise Breslauer, could you please tell me if the IgenX test is the same thing as an iSpot test? Where I live, I can only find a doctor who does the iSpot. Is that accurate? Thanks for any information.
- August 21, 2016 at 12:12 pm
I feel the ispot lyme test is better. It tests the T Cells. I know is not FDA approved yet.
- August 20, 2016 at 7:01 pm
Jillousie, so sorry to hear how your mother was treated, even at the end when it should’ve been obvious she was sick and dying. Disgusting!
You’re totally right, this idea of Lyme being a psychosomatic illness needs to end now. None of the three doctors I saw said they thought I was crazy or making it up when my tests came back negative, (was told one Lyme specific band was a false positive) but I could tell they thought it. Which is why I haven’t been back even though I need to see someone.
- August 26, 2016 at 8:58 am
I totally relate..SInce 2002….have had chronic lyme….Same as every word you wrote…Now it is 2016…Very bad blockages and heart problems…When I say….which I always do .that I have Chronic Lyme Disease..they say..”YOu need to discuss that with your primary care Dr…it has NOTHING TO DO WITH THE HEART!!” They also say…..When checked for endocrine issues…that has NOTHING TO DO with the heart…and YES…all the doctors think …crazy…depressed..in head..Prior to 2002…was very successful..totally active…traveled the world..started 3 businesses….taught…was sales manager of radio stations..started a THINKTANK business…..lived in other countries….
Thank you for you reconfirming for me that I am NOT ALONE!
It is still HARD TO BELIEVE..that doctors..especially Cardiologists…Vascular surgeons..etc..claim that Lyme Disease has NOTHING to do with the heart.Ever part of my body and every organ of my body…
is non functioning…hurting..damaged….deteriorating…
One thing…that has helped a bit..
EPAZOTE TEA..a few tablespoons..on and off..
All the best to you!!
- September 14, 2016 at 9:16 pm
Judy Gardet, I can TOTALLY identify with you! Before getting sick I was very active too, have a MBA in Finance, worked and traveled to many places… It’s been years that I haven’t worked or traveled. It’s very sad when doctors don’t listen or don’t want to go outside of their perfect little box. I wonder if the same thing was happening to THEIR FAMILIES would they act the same way??? I bet you not!
On a side note, have you tried alternative docs? I’m sure you have but don’t give up. The answer is somewhere you just have to find it. Wishing you and all of us the best of luck in getting healthy again!
- September 15, 2016 at 8:03 am
I’ve been under the care of my holistic practitioner who studied under dr Dietrich klinghardt and dr Lee Cowden for the last 8mos. I also have been taking results RNA products specific to lyme. And Im in my 3rd week with advanced cell training. If I had it to do over again,I would’ve started with advanced cell training. Basically, we all have a dysfunctional immune system. Your brain communicates with the immune system. And there are several reasons the brain gets stuck and doesn’t work properly. Just like your brain can train your muscles how to type, play golf, or dance (which isn’t innate) it also trains your immune system to kill the stealth invaders.(which is innate in our dna). Prayers out to all going thru this. .
- August 19, 2016 at 6:26 pm
How do you get IgeneX to test? I.E. do you tell your doctor you want your blood only sent to this lab?
- August 20, 2016 at 5:39 am
I have all the symptoms of Lyme. I was bitten by a tick eleven years ago and immediately came down with Polymyalgia Rheumatica and Giant Cell Arteritis..My neighbor was also bitten by a tick and came down with the same thing! Blocked ear, unexplained hair loss, thyroid,Questionable kidney tests, pin pricks, sleep apnea, Speech aphasia, aching joints,…This is NOT a coincidence!! Because all my Lyme tests came back negative, my Doctor thinks I’m a crazy old lady!
- August 20, 2016 at 6:41 am
Margaret, find a Lyme Literate MD & get treated, ASAP!
- August 20, 2016 at 8:50 pm
Untreated for years. Family, public and medical community treated me as though I was insane. Worst, lonely, real-life nightmare. Horrific.
- August 21, 2016 at 8:03 am
How are you doing now? Has treatment helped? Have family and friends come around now that you have been diagnosed?
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