Three weeks ago, I entered a clinic with large rash on back of leg. It was Day 2. It had grown from 1" to 4" overnite.

Site of bite was itchy, swollen but not yet a target design. Still, the nurse who saw me agreed that it was potentially a tick bite in early stages and should be treated. I expressed lyme concerns and she agreed to put me on immediate doxy for 28 days. I asked for a test to confirm and she said none were available until 8 wks into disease. And that sometimes they produce a negative result wrongly. In conclusion, she said waiting was not a good idea if it was in fact lyme and to begin taking doxy that day.

To make matters more odd, she was not able to enter 'lyme' as cause for my antibiotic treatment. Why not? What is wrong with our medical system?? She had to maneuver the computer system and simply entered arachnid bite rather than lyme. How ODD is that?? I was perplexed the entire time in the clinic office. I thought how ludicrous the entire system was surrounding lyme. This was BEFORE seeing the film 'under our skin.' Now it all makes sense to me. Corruption is at the root of the lack of treatment! That is unethical and immoral.

I continue to take my doxy for another week. I've had symptoms of fatigue, lethargy, extreme neck pain, headaches and low grade fever during first 10 days. I seem to be getting better and I pray to God that the 4 week doxy treatment plan will cure me.

I am thankful for the Lyme Doctors brave enough to take on the corrupt medical system. It is extremely UNFAIR for a disease that I may potentially have to not be covered by insurance if it decides to become chronic. Thank you for the film 'under our skin.'

I can now sympathize with all who have this dreaded disease. IT IS REAL.

May God have mercy on their soul, especially since I believe they know better and let their wallets and egos get in the way. I know personally what Lyme does and what all I've lost from it. I would never wish this disease on anyone. However, if I had to pick someone who HAD to contract it, it would probably be Wormser or Shappiro. Maybe then they would change their attitude about it. We need a completely new ILADS panel. Let someone who knows what they're doing, with the research FROM THOSE SUFFERING to back it up. I can think of a few: Burrascano, Jones, Klighardt, Donta, Horowitz, etc. These current board members don't have a clue! They are literally killing thousands.

So what do we do about it? Does someone have specifics on how to stop what is happening? How do we stop the IDSA...Who do we write to or what needs to happen to get them out of the drivers seat?

This places Atty General Richard Blumenthol in an embarrassing situation. Despite his work to prove need for a second panel and the reasons why, I hope very much he takes this personally. Basically this panel is sending the message, "Ha Ha" you can't get us Doc's, we told you once, don't mess with us again. I've heard over and over the truth eventually comes out. And I've come to believe it because I've lived long enough to see it. The truth will come out. I just hope this decision is challenged quickly. This is wrong.

One day one of these IDSA's docs will be bitten by an infected tick and get sick. Only then will they wake up and understand how devastating their archaic guidelines are. (hmmm...unless they don't take their guidelines to heart and treat by ILADS standards!) Every mention of lyme disease by patients to a stranger in the grocery store, or a journalist who has the instincts to follow the money is a step closer to the goal of all people with lyme disease and their courageous doctors. THE TRUTH, AND A CURE. This won't happen unless all of us start speaking up LOUDLY and incessantly and demand the necessary changes. My daughter, Nicole age 17 is doing just that. She is making a difference from her wheelchair, even with her 1 minute short term memory. Her blog, www.bitemeback.blogspot.com/ is read by people from Vancouver Island to North Carolina, and California to Nova Scotia. She speaks from her heart to politicians, lions clubs, rotary, medical students, on the steps of the legislature...anyone who will listen. She hopes to become a doctor once she regains her health. She was one of those featured in the Canadian lyme documentary done by CTV W5 called out of the wild available online to view. One of Nicole's favourite things to do is to search for just the right quote and here is what she came up with tonight; 'The future depends on what you do in the present'. Ghandi.

During the review panel hearings, one of the panelists complained about the statement in the guidelines that attributes many chronic Lyme symptoms to “the aches and pains of daily living.” The panelist suggested that it disrespected patients’ suffering. But the final report gave as one of its reasons against the existence of chronic Lyme that its symptoms are "nonspecific." The report also stated that Lyme's symptoms are "common in the general population." However, even the guidelines admit that Lyme's symptoms can be severe and continue during what it calls Post-Lyme Syndrome. But the panelists voted 8-0 that “no change was necessary” to the guidelines. What happened to the dissent? What persuaded him that people with what it calls Post Lyme Syndrome suffer “the aches and pains of daily living.” After all, such an idea means that the guidelines' Post-Lyme Syndrome doesn't exist either!

Ugh my new computer is not cooperating. Lying in bed and typing can be tricky. I don't think i can rewrite what i just wrote, but i will say this - i would not wish my rotten, painful, keeping-me-stuck-in-bed when i would rather be out having a life illness on anyone. BUT there are a good half dozen i wish could spend a day in my body, or with every symptom i go through. This chucklehead makes seven. Doctors work for us, friends. We pay them to provide a service (i wish i could have all the money back i spent on mis-diagnoses! ooh i like that thought :-)). If your doctor is being a poop head, not keeping up with the latest research? FIGHT and find one who is and who will treat you with respect. These people swore oaths to not harm us, and now there are actually cases of women with Fibromyalgia and Lyme who are experiencing Post Traumatic Stress Disorder *caused* by jerky doctors. That's just not acceptable. Find the good ones. Do your own research always. And please remember, you are not alone. {{gentle hugs}}

On Aug 5, 1998 I came down with a 104.5 degree fever and a burning cramp in my back. The cramp is still there. My fevers went away after nearly a year. About a month after an operation where they took out my appendix and gallbladder. I searched for a diagnosis for 6 years until finally (via urine pcr - DNA test) proved the bacteria was in my system... See More. Then I went through 2 separate 6 month courses of IV antibiotics, 3 bags a day. The cramp in my back got much worse during the treatments and then slowly settled down over the next year. I've had tests done that show nerve damage has occurred in my back and legs. I lost my job, and my marriage ended, and this issue has alienated me from most of my friends and family. The disease is very hard to understand and accept by those close to you... After a long battle with long-term insurance and our Social Security administration, I am now supported financially by them. I had to stop working after my second IV treatment. Today, I am still alive but no longer contributing to much to society. I have my kids to raise and each day I survive and try to count my blessings for still being alive. However, my life has been derailed, and the quality of my life has severely diminished. I exist, but feel as if I am in a prison that limits my ability to interact with the rest of the world. I am disappointed in the medical community who flatly refused to consider lyme as a possibility here in NC. At this point, I am only treating my symptoms because there is no approved 'cure'. I have given up. My ten year effort to identify what was wrong with me and 'fix it' nearly killed me. Our doctors need to be educated but this legislative panel is so strongly against lyme awareness that it's political suicide for a doctor to be open minded toward Lyme. It makes me wonder, about the conspiracy theories... how lyme was created... the stories about Block or Plum Island and the chemical warfare research that went on in it... This governing panel of ID doctors seem to be motivated by something other than facts. Usually, when things don't add up it's because someone is distorting the truth to cover something up. Is it possible the reason lyme is so difficult to diagnose and treat is because it was designed that way? Was the US Government responsible for the introduction of lyme into America or possibly not the introduction but the proliferation? There is more than one book about this theory available... You can find one I've read at this URL on Amazon--> http://www.amazon.com/Lab-257-Disturbing-Governments-Laboratory/dp/00600... The whole situation stinks like a conspiracy... I don't have the facts or know the truth but I am certain of 2 things, 1. there is a truth and someone knows it and 2. there is an organized effort to distort the truth. Additionally, that distortion would have to be precipitated by a governing organization like this. To make matters worse... I don't believe they are 'elected officials' so we're at their mercy until someone above them decides to make changes (I have no idea if this is even possible). I've read that we've already discovered several relationships where a conflict of interest clearly influenced the original author's opinions... They should be ashamed, reprimanded, replaced, because they operated knowing they were unfairly biased in the first report on the 'lyme guidelines'... but then to stamp the document created under known bias as 'correct', is completely unprofessional and should be a signal to everyone that corruption is present and clearly influencing the conclusions of this governing panel... This kind of abuse and corruption has infiltrated every government in history and that's why it's so important to limit governments power. There is something stronger than common sense, stronger than professional shame, stronger than their oath to 'do no harm', motivating (in fact I'll go further and say controlling) these doctors.

What do I click to "throw up"???????????? This is absolutely absurd and criminal. These people have obviously not looked into their patients eyes; nor have they had to dress their teenage daughter and look into her eyes knowing that the disease could be treated if it weren't for "medical politics". May God have mercy on those who are forcing pain upon our society!