Panel: Lyme Disease Doctor Should Be Reprimanded

[Libby]

I find it interesting that Dr. Jones supporters are called members of the "so-called long-term Lyme camp" There is nothing so-called about it. Long term Lyme is real and it affects the lives of it's victims in horrific ways.

I find it unbelievable that they are trying to take away a doctor who has saved more lives than any of us could ever imagined. Everyone wants there own lives to go well and none of us want to be sick, but when that happens it's devestating. Once your sick and in pain, the one thing you want in the world is for you to be healthy and for you to actually live life instead of wallow in it. Well, here are two kids who's happiness was being taken away from them, their childhood, too. So, Dr. Jones took a stand and decided to give those two kids the most important gift of all, and that was the gift of living life. He has given that very special gift to thousands of children, including me. That is why I find it horrible that I am growing up in a world where people are heartless enough to try and stop a man who has done nothing but give hope and joy.

My wish is that one day these people who believe long term Lyme is nonexistant, will just look in the eyes of someone suffering from it, especially a child, and maybe they might just see that by saying it doesn't exisist or trying to take away their doctors, they are taking away more than they can ever imagine.

Long term Lyme is real and I applaud the few courageous doctors who sacrafice to help those in need.

Sincerely,
Libby (A proud member of the "so-called long-term Lyme camp" and an even prouder patient of Dr. Charles Ray Jones)

[Tom]

This article is misguided. The quote "The majority of medical experts say there is little evidence to support the idea that Lyme Disease, if treated properly, will nonetheless continue to cause ongoing symptoms, a view that has been bolstered by the treatment guidelines issued by two medical associations for the disease." is in accurate.

This view by two medical associations is a single view by the same individuals who sit on the two medical associates. These individuals have a vested interest in their view dominating the discussion.

[Patti]

Interesting how 42 of the 43 responses were informed about Lyme disease, the problems with treating and the fact that the mainstream medical community is no treating it due to insurance issues, which ultimately boils down to money and politics.

Where is the article on that?

How about not just quoting bad information
"The majority of medical experts say there is little evidence to support the idea that Lyme Disease, if treated properly, will nonetheless continue to cause ongoing symptoms, a view that has been bolstered by the treatment guidelines issued by two medical associations for the disease." This is not the case - they actually limit and misuse the research to forward their own agendas.

try actually doing some research into it and providing a real service and educating the public about what is really going on -

a good place to start

http://www.canlyme.com
check out the research links
maybe you will learn something for the next article you decide to write - check your facts...don't just regirgtate them...That's the problem with journalism these days - no one does any true fact checking or research on their own...

[Sick in Texas]

Dr. Jones was a huge part of saving my sons life and it pains me to see this. All we can do is keep getting the word out and let the world see the real Lyme. I am glad to see that there is more and more in the news about this awful illness. As must of a double edged sword it is at least it is getting out there!

[Frances]

Noticed posts above re;strange behaviour of medical board and govt.
Its even worse here in BC canada.
We are told Lyme disease doent exist in BC.
Doctors shake their heads and get angry and say who told you you have that!!I cant get treatment here.Im going to try salt and Vit C treatment.Anyone else tried that??
See lymephotos website.

[Frances]

Does anybody know why Doctors in Canada are so against a diagnosis of lyme disease.Whats in it for them to be so angry about it.

[Sarah Olson]

Shirley Forsman
Shirley Forsman
February 6, 1930 - November 9, 1999

Shirley Forsman was mis-diagnosed with Alzheimer's disease for 9 years before she died of Lyme disease in Pine County, Minnesota.

Many thanks to Lyme Alliance for allowing this excerpt-written by Tom Grier, from their newsletter:

"Shirley Forsman, RN, had a history of Lyme disease at age 59 and was treated with two weeks of Doxycycline. It was about two years later that Shirley was diagnosed with early progressive Alzheimer's disorder and her health steadily and quite rapidly declined. Within a few short years, Shirley needed complete around the clock care that was provided by her daughter, Katie Harp. Shirley was no longer able to walk, talk or perform daily functions such as dressing, having conversations or controlling her bodily functions.

"Always suspecting that her mother's mutli-system problems were caused by unresolved Lyme disease, Katie fought for years to have her tested and treated. Her requests were always met with resistance until she found a young Bemidji internist who was willing to do a trial of IV Rocephin just to see if the patient responded. Amazingly, the patient responded favorably and almost immediately.

After having been nearly completely non-responsive to any outside stimuli for over two years, Shirley was now beginning to recognize family members. She could form sentences that were a few words long and was now standing and walking short distances. In fact, the physician was now recommending physical therapy and a walker.

The most dramatic change was perhaps the change in the frequency and severity of Shirley's seizures. Grand mal seizures could be expected almost every week and they were often violent enough to throw her out of bed. The nightly thrashing and lashing about in her bed came to an abrupt stop shortly after antibiotics were introduced. In the end, Shirley was going as long as two months without any major seizures or bed thrashing. Her muscle twitches in her face were completely gone.

Upon seeing this change in Shirley's health, the attending doctor changed the diagnosis from Alzheimer's to neurological Lyme disease. However, shortly after switching Shirley from her IV Rocephin to a combination of orals, her health began to decline. After a series of seizures, Shirley died at age 69."

Her death certificate lists Cause of Death as: seizure disorder as a complication of Lyme disease.

[Balanced Hope]

As a Family Medicine specialist, diagnosing and searching for info about how to treat my patients who have equivocal Lyme history (although we live in an endemic part of the US) or limited data to justify it's current or past presence, I struggle with how to compassionately treat my patients.
...To empirically treat (and providing informed consent about the consequences of the treatment) versus offering a form of false hope. Here is a recent,free good summary from "mainstream" medicine published in the NEJM. The authors have a certain bias (as you will see as you read) but they have a point: REPRODUCIBILITY.

NEJM article:“ A Critical Appraisal of "Chronic Lyme Disease" - http://content.nejm.org/cgi/content/full/357/...

Supplement: http://content.nejm.org/cgi/data/357/14/1422/...

For those who burn bridges by threatening to sue: KEEP IT POSITIVE and educate those around you...

Now that I'm aware, I've helped several of my patients when WE have diagnosed and treated several tick-born illnesses this year...

Still searching for reproducible truth on this issue...

[ddv]

Gary Simmons wrote:

My wife, our two children and I were diagnosed with Lyme Disease in 1989. We were treated early but because we were under treated it led to an antibiotic resistant super bug which became difficult to treat. Three highly acclaimed medical labs from across the country found DNA of Borrelia burgdorfi in my spinal fluid after using the medical treatment guidelines at the time, that ALLen STEERED us into long term treatment, YEARS. I believe treatment decisions are between an educated informed consumer and their personal doctor which should be protected by law. This disease is little understood and has no room for a cook book approach for treatment. We are each unique individuals with bacteria in the environment that evolves and mutates. The charges against Dr Jones would have strong implications against long term treatment when we were first diagnosed eighteen years ago. This will be detrimental to the health of children and adults across the country in a very negative way. This will cost insurance companies more money in the long run. I believe the people that need to be investigated are the ones who prosecute treating physicians and patients on the front lines. How many more need to be sick? Answer is, there will be a time when the ones who prosecute will seek treatment from those whose lives they ruin. It's a turn towards a third world country.

Absolutely! Very well said. Coincidentally (or not), check out where the United States lands on the world's ranking list for health care. Number 37! That's right. No joke. AND....we are just above all the third world countries. Do we tip up or down from here? One more down, and there will be a third world nation right above us. America has become a huge disgusting mess of greed.

[lyme liberation]

Some docs believe Lyme has mutated to an airborne form. Scary!

[lyme liberation]

Thank God for Blumenthal. He is always willing to do the right thing for the right reason.

More power to him & Jones.

[OrganicTexan]

Shame, shame, shame on the committee who took the doctor's license away. I have suffered most of my adult life since 1983 with chronic pain and severe cognitive difficulties, misdiagnosed with Fibromyalgia and FINALLY a correct diagnosis and treatment for Chronic Lyme Disease. Hooray for the LLD!

I hope every doctor, medical professional and the like who DISCOUNT, DISBELIEVE and JUDGE us will one day suffer from the worst case of chronic lyme the world has seen. Think maybe then they'll reconsider?