I found out about chronic Lyme Disease about 3 years ago. I figured out that I've had chronic Lyme Disease for most of my life, and I started having most of my health problems while I was pregnant with my now 5 1/2 year old son. He's been labelled as "autistic" and his symptoms greatly improve on antibiotics, specifically Zithromax. Every time he's on them, he's almost like a typical child his age. I live in TX and I need help finding resources for getting my son the right kind of help since he has no health insurance and Medicaid/CHIPS won't take him because our income is barely over the income limit. I homeschool my son (which he does GREAT in) and all the school district will offer help with is screening/diagnosing services, and maybe some speech therapy. I cannot afford to waste money on therapies which will only serve to cover up symptoms at best and mostly serve to make doctors and therapists richer and cause more suffering to my son and to our family. I've had all I can take from our medical profession and I am only going to take some serious help from serious doctors/therapists who know what they're talking about and can actually help us.

I'm from the Netherlands so I'm sorry for my writing in English. My father have this desice since I was young almose 20 years. His face was and neck were paralysed. It was horreble. We are lucky that a nurce was interesting herself in this desice because one day later and he was dead. They give him antibiotics for a few weeks and his is never be the same dad angain. He have always pain in his body, Nerve pains every day. So the people and doctors they say it can't be cronicle, they have to see him because it is!!!! We were to the hospital again this year and the docor said, he can't help him anymore because he don't know how. It hurts a lot when you see you father in pain and you see his face without expression. He can feel but his is never be the same. I wish I know the name of the anticiotics of the persons in the show. Here in the Netherlands they don't give antibiotics for life so they can live again their normal life. Here they say we don't know what to do.

The only lyme specialist I know of is in Tampa, FL. Michael J. Cichon 813-985-5513.  Good luck.

You are so right about Columbia. I try to warn everyone about their total incompetence. They told me 2 to 3weeks to get my test results back....It took 3 months. They never responded to my emails after they got my money and they never did any followup phone consultations as promised. A total exercise in frustration and a total waste of a lot of money.,,,,and yes they are way behind the curve as far as their "expertise" goes. In a word, PATHETIC!

I am helping my niece  find a specialist in lyme disease in or around the Orlando FL area.  Her husband is seriously ill with this terrible disease, siezures, headaches, paralysis of the face and one arm, difficulty speaking and understanding. He is not getting any better.  They were just married in June!  Does anyone have any suggestions? PLEASE!

Dr. Schneider

Thank you for speaking out about this "service" or should I say "disservice" to the lyme community. I was also "taken".  If nothing else, they should be reported to the Better Business Bureau 

This is the show finally got me to sign up to these messageboards.

As someone who has been stuck at home chronically unwell watching Dr Phil on many days it was ao amazing to see this issue, this example of a chronic disabiling disease that is at best underdiagnosed and at worst totally misunderstood FINALLY discussed on a program like this.

Please do more shows on topics such as this or chronic fatigue or fibromylagia or POTS or any other disease syndrome that silently destroys peoples lives and is difficult to diagnose or treat.

I watch from Australia, with a Ph.D. of my own in Science, wondering what it is that has derailed my life and made me unable to get well or get a diagnosis of what is wrong with me for these past years.  So many people, myself included prior to this affecting me, do not believe that someone who keeps passing medical tests as "normal" could actually really be sick.  I have to thank those doctors who have believed me and given me things that have helped me but still I live with the uncertainity of not knowing whether I am going to be sick or well or what I can best do about it.  Trial and error and self experimentation are difficult and scary.

I feel like the constant "are you sure you are not faking?" questions are like asking someone who is anorexic "why don't you just have something to eat why don't you?". Anyone chronically ill, without a diagnosis is questioning themselves every moment of every day and in my case often making myself sicker by trying to keep going with a normal life despite my symptoms.  Everyday living with the guilt of not being able to be okay, not living how you used to or want to for those you love and wondering if you are mentally ill is very stressful.

It is important you raise the issue of those who opt out of living in world through some conscious choice and the pyschology of that but Dr Phil PLEASE don't forget those of who desperately want to be out in the world living our lives to the full but are prevented by something we can't identify and if we can't identify we can't fight it to try to regain our lives.  Thankyou for all those who post and blog about these conditions, you help everyone who can identiify with your story gain information that could help them and maybe most importantly feel less alone in their own battles.

Thankyou and lets all keep on fighting.

This message is to thank Dr Phil and his staff for presenting the face of Lyme Disease to the public.
Unfortunately, as much as I comprehend the representation of the "other" side, Dr Auermacher (I don't recall his name) and his colleagues at Johns Hopkins really do not have a firm grasp on this condition. I also suffered from Lyme DIsease for the better part of 3 years, and am just now on the road back up. I was in the last year of my doctoral studies in Ayurvedic medicine and have been practicing Chinese Medicine for 18 years when I became seriously ill. I traveled the WORLD (Germany, Italy, Asia and ALL over the USA) to find proper treatment and care for Lyme. It was a nightmare that took over my life. I went from being a Nike athlete teaching master classes and working for world renowned fitness spas like the Golden Door and Rancho La Puerta, to being bed ridden, emaciated and sicker than I could ever have imagined. I am NOT a hypochondriac and it is, quite frankly, insulting and cruel that the medical establishment tries to push off concern and action with this very LAME accusation while SO MANY people are suffering.
It has taken ALL my determination to seek answers and find doctors that truly "get" this illness. There are very few.

In the meantime, my entire practice is focused on Lyme Disease and I can ASSURE you that it is REAL and it is CHRONIC for multitudes of people. NO ONE can convince me, or the teams of doctors I have interviewed, to believe otherwise. If you should choose to do another segment, Dr Phil, I will be happy to supply you with ANY and ALL information I have discovered over the past 4 years. I can also be a case study if you would like. It is a pandemic that will be very costly to treat... some will regain their lives, some will, sadly, not. I have been luckier than most, and have found EXCELLENT care and have spent MORE than $150,000.00 of my and my family's money trying to get well. I am NOT a proponent of antibiotics, as there are OTHER alternatives that are safer, and as effective. It took me THREE years to discover the right combinations, and they are different for almost every patient since this illness impacts EVERY body system and the strains and co-infections vary from person to person ... A SMART, DISCERNING DOCTOR is the key...

(An aside...) Lastly, one of the WORST experiences I had while I was deathly ill with Lyme was at the esteemed "Lyme Center at Columbia Presbyterian" in NY CITY. They are NOT versed in Lyme, they are thieves and have misled and deceived seriously ill people (including myself)... PLEASE IF YOU HAVE THE MEANS TO WARN PEOPLE, THIS IS ONE PLACE THEY SHOULD NEVER GO... It cost me $15,000.oo for two wasted days and testing that amounted to NOTHING and then, to top it off, they didn't get the reports or results to me for 7 months- a travesty when someone is on the verge of death from being so ill.

THANK YOU for reading this, and God Bless you for sharing the horror so many of us have had to endure...

Sincerely,
Dr Stephanie Schneider

You need to have a western blot done

preferably through igenex but if you use a different lab you need to order a copy to yourself on the submission

because translation of the test is a big issue too.


Testing is so poor its best to see a lyme specialist to get a clinical diagnosis

visit: http://www.ilads.org/

http://lymepedia.org/



Paul

Wow, I have been so sick for almost two years and so many of my symptoms are explained by chronic Lymes disease.  The severe migraines and headaches, pain, fatigue, weight loss, fainting, seizures, numbness, mental confusion and, light sensitivity why hasn't my Dr. thought of testing for Lymes Disease? This baffles me. I have almost every symptom in the book.

 I know I was bit by ticks a few times growing up.  I remember being scared and pulling them out of my body then worrying later if I had left their heads in like my parents had warned.  (grew up in the foothills of the mountains where deer where prevailant) I haven't seen a tick bite on me in probably 18 years though so could this be? I have a neurologist who is treating me at this time who has gone as far as yelling at me trying to say i'm lying and faking everything.  I was working two jobs, loving life when this all hit me like a truck. 

Some days I can't get out of bed.  This is the last thing I would fake.  I am 33 and have never had any mental illness history not even a day of depression.  My life was thriving, I was moving up at work and loved it!

I have a beautiful 5 year old to live for, to take care of.  Because my 2 jobs let me go for not being able to come back to work once temporary disability was over I am on Medi-cal goverment insurance and it is HORENDOUS.  Talk about being treated poorly.  I had seizures and was in the hospital for 4 nights and never saw a neurologist.  They botched my spinal tap giving me a spinal headache as well just saying that happens sometimes when someone is thin when i screamed in pain from them hitting something wrong during it.

I am thankful for Dr. Phil for putting this show on.  A lady at my Mom's work mentioned Lymes disease to her as a possible thing for me to look in to but this show gave me hope of a diagnosis.  Maybe someday I will feel well again!


Now where to go from here????