Pamela,
I am so happy that you are applying your extensive scientific knowledge, writing skills and personal experience to the cause of contested diseases and diagnoses.
I come to this blog from the Lyme disease world. But I thought you might be interested in talking with a good friend of mine who is a professional in the MS world and once described to me a study she worked on which showed the astounding prevalence of misdiagnosis and "all-in-your-head" proclamations that MS patients struggle with as they seek to find an explanation for their. It is much like the Lyme scenario (the matter of overlap of Lyme and MS is a topic for another day). Her research (I hope I recall the numbers accurately enough) found that the average MS patient took about 2 or 3 years to get a correct diagnosis and a large percentage (? I seem to recall the number of 50%, but could be wrong on that. ??) are told their symptoms are psychosomatic or due to stress.
If you would like me to put you in contact with this PhD/psychologist, well known in the MS world, just shoot me an email.

I went through something similar to your son, a few years earlier than he in NJ. In 2003 I tested positive for mycoplasma, and my rheumatologist at the time noted it was something associated with GWS. I've never been in the service, so I can only assume this has something to do with the Lyme I had. Has your son ever tested positive for this, even years after he was treated for Lyme?

Hi Pam:

I am so thankful for your book,"Cure Unknown." It has helped me so much to understand why our local hospital is denying me the opportunity to be hospitalized based on my medical diagnosis of lyme disease.

Also, why did they refused to allow me to have primary care because their doctor would not treat any "past, present, or future Lyme disease patients," in our town?

Why did my children's primary care doctor refer them out to dead end doctors who wouldn't care for a chronic lyme patient? And refuse to continue to be their primary care doctors?

Why would our local hospital bring in a well known scientist to talk to our local doctors to say "lyme disease is not a problem in Kansas?"

Why are the local doctors and hospital to scared to do a simple CD57 NK blood test by Labcorps?

Why was one of our local doctors asked to leave our local hospital when he refused to stop testing lyme patients, finding them at unprecedented levels in our town?

Why would Kansas State University start a Lyme Research Center at the Veterinarian School and refuse to treat a lyme or chronic fatigue patient at the University of Kansas?

Why would we get a 450 million dollar bio defense lab near the Vet school and NIH give 120 million grant to build bio research labs to ship out internationally through the superport on the superhighway in Kansas City, marketing their borrelia research patents from our State, AND deny that chronic lyme exists in our tick infested State of Kansas?

Our people are so infected and denied care at every level.

Thank you for helping us, Pam.

Peggy (Peninah)

The medical establishment hasn't done a very good job with symptoms shared by thousands potentially millions. So my question isn't about fixing the establishment! It is about living with a disease in the best manner possible, and how that can be done?

There is so much information through a great many support groups. There are battle lines within these support groups about what is an appropriate manner to handle the disease. Some voice for the alternative approach some for ILADS and a longterm antiobiotic regimine. Then there is a hybrid of both of varying degrees.

It seems we need a better way to analyze what works and what doesn't. What is cost effective and what isn't. An example would be glutathione the master antioxidant, something that appears to help all that have lyme. Is it cost effective to use IV or better to use suppositories? What should someone with lyme do with a very limited budget?

We need some voice as to what is the practical way to manage symptoms. All the while, we wait for a medical establishment that has totally lost compassion for their patients.

Where is it?

I am giving your book to over a dozen people for the holidays. You have done such a masterful job at putting the situation into perspective. You have skillfully written to address the concerns of people with little medical background as well as those with some prior experience.

I believe your book and the movie "Under Our Skin" are on the crest of a wave that will bring full public consicousness to this major health issue. Thank you for speaking in PA in September; I enjoyed meeting you and will continue to diagose and treat Lyme patients as well as spread the word to colleagues in every discipline.

Wishing you, your family and loved ones, and everyone in the "Lyme Community" peaceful holidays and an even brighter year in 2009!

I have found lots of research going on in Colorado in the field of tick-borne disorders(PubMed). All the doctors I have seen have been told that it is not a problem yet the research and my own infection seem to prove otherwise. I have the EM rash that has stained my skin to this day and a puppy that has been reported to local heath department as a Pos.case.People call and email me to find out where they can find a doctor that knows how to diagnose or help them in Colorado most resort to going out of State. "Under Our Skin" and Your Book have saved me hours on the phone trying to explain why Lyme and co-infections go undiagnosed and why they get the cold shoulder from most doctors....The Lyme Wars go on~Mary

So glad to see this blog and article. As a ex-psychotherapist who has been housebound and ill for 20 years because of long-term Lyme that went undiagnosed, i'm glad to see that this sort of content will be in Psychology Today. Good for you!

I am also looking for the registration page. I can't seem to find it either.....Can anyone help????Thanks in advance...Janet

I TOO, HAVE LYME, FIBROMYALGIA,SEVERE OSTEO-ARTHRITIS AND DON'T FEEL AT ALL WELL MOST OF THE TIME. IS THERE ANYONE OUT THERE WHO HAS FOUND A DR. WHO CAN TREAT THIS MALADY (I LIVE IN WESTERN WASHINTON) AND SAW DR. ELLIS FOR A WHILE; BUT THE COST WAS GREAT AND HE COULDN'T SEE ME AS A PATIENT; ONLY TO DIAGNOSE AND TREAT LYME. IS THERE ANOTHER DR. IN THE AREA THAT ANYONE KNOWS ABOUT? THANKS PLEASE ANSWER HERE bobhake@centurytel.net

Dear Pamela,
I have been diagnosed with MS and am being tested for Lyme tomorrow. What I do have is Morgellons Disease, but it "doesn't exist" officially, and trying to get a doctor to at least be open-minded about it while treating me for "known" afflictions is an unbeliveable journey.
I really hope - no, I PRAY, that serious attention be given to this horrible illness. My MS is nothing compared to this.
Thank you,
Claire

Pam: Thank you for writing this book, which is going to raise awareness of this debilitating disease. I've heard many talk about how great of a read it is, and can't wait to get my own copy.
I'm uncertain as to whether it is on audio. Those suffering with lyme are struggling to read. Thanks again. Looking forward to visiting this blog. Be well, Melissa