I have thank Mr. Fisher for the great letter. It has been a while since I visited the website but I will make it a point to check in more often. I wrote a note to each of the addresses given as my story is not much different from Mr. Fishers. Misdiagnosed over 13 years and RMSF which was quite a surprise for everyone but me since I traveled to North Carolina frequently from western PA. My doctor feels I had two different tick bites. I am showing the movie to students and hope that they, their families or their patients will never have to go through what I did.

This is the most awesome letter to the IDSA--in fact, to any warped retrogressive powerful body--that I have ever read. Yeeeouch. Go ahead JFS. Christina

Currently Medeek.com and CJ Wilkes Photography are teaming up to support Mrs. Utah 2010, Jenny Bezzant, in the Mrs. USA 2010 pageant. Her platform is Hope and is all about Lyme Disease and its awareness and treatment. Here is a link to our writeup. She is doing everything she can to bring help to all who are afflicted with Lyme Disease. http://cjwilkes.com/index2.php Simply go to Sponsorships and Causes to learn more about what she is doing to help this very situation you are talking about. Thanks so much for sharing your story!

Lisa: Thank you for sharing your story. Jordan, you too! This has helped me so much. I'm going to fight to raise awareness, which would not have been possible without the sharing! Keep it up everyone, as together we make a difference! I think I've had Lyme for nearly a decade and I am about to start on IV antibiotics. I would have never gotten to this point so quickly without the awareness that's currently out there. My Dr is Lyme literate thank God, but I am not blind to the struggles of those who were not as fortunate as me. I will fight this disease even if I am fortunate enough to beat it! Cheers, Jenn

Hello All, I am seven years into this Lyme Disease without having had a diagnosis until July of 2009, at this point I had thought I had Bone Cancer. I was happy when my M.D. found Lyme instead, it showed up as an old infection. I then started treatment with a Lyme Literate Dr. and was planning to go to see him in May of 2010 and I had cancelled because my soon to be 15 year old daughter started to show symptoms of Lyme Disease. My two children showed antibodies to Bartonella and have showed a positive to Lyme Disease via the Western Blot thru Igenex. My puppy who was 2 months old in Dec of 2008 had a tick wedged in her and I took her to the vet. who said she had anaplasmosis and put her right on a heavy dose of antibiotic. I did not get diagnosed myself at the time of the vet appnt. and I wondered why they had on gloves, and used instruments to remove the tick, I thought to myself, geeze they are somewhat neurotic! now I know! I am in the wetlands here in Dunstable MA and I remember standing in my bathroom a long time ago and saying to myself, "we are all sick here." A lot of people on my street (the majority) have had Lyme Disease and God knows how many children are misdiagnosed. I had been diagnosed throughout a 7 year span with pneumonia twice, a virus that attacked my muscles, and possible Lupus. I was hoping that perhaps the state of MA could come up with a way to kill the ticks without affecting the environment? I believe within a two years span of time there shall be multiple clinics all over the US so people can be treated for just Lyme Disease. I really do not understand why the Doctors just don't admit that they had made a mistake? Is it their ego? Did they intend to make a lot of money off of the sale of pharmaceuticals? They would not be able to accomplish this because thank God for the internet and the fact that we are in "the know about this", and all eyes will always be watching what they do, they will never be able to go near a monetary showing of Lyme vaccinations, or drugs. WE SEE THEM NOW! and they know it. This Lyme Disease has been and continues to be a huge injustice for the people of this country. Since when do we get no choice in our own Medical treatment? I have signed disclosures always--for myself and my childrens health, stating: this is an okay risk that I am willing to take. Always signing a disclosure for lazer eye surgery, wisdom teeth removal, any surgery and all types of disclosures to receive aneshtesia, etc... etc....So let me decide, how to treat Lyme Disease, for myself and my children. I am aware of the potential risks, of taking long term antibiotics. BUT long term tetracyline has been given to treat acne, so I am not buying the arguements about Long Term Antibiotics developing an immune to antibiotics. I have had no ill side effects from the use of antibiotics from July of 2009 to March of 2010. None what so ever! In fact I know that is what is curing me along with lots of probiotics, the sauna and excercise. What I know is that these so called Doctors "Cashed Out On THEIR SOUL" and I would rather be me than he. Lyme and all! I really mean this! At some point before they entered Medical School they had raised their hand to become a Doctor, a HEALER. They then did not stay grounded in the principle of the matter (being a DOCTOR)and went for? the CASH? This is what our country is faced with on so many levels, (and feeling the ramifications of a corruptness)and the changes will start but it will happen from the people. If you look at a pyramid the base of it is so much thicker, and stronger than the top of it, and we are that base. Everyone I talk to I tell them I have Lyme Disease and how it is not what they were told it is. My friend laughs at me because she says, "everyone else I know won't tell anyone that they have Lyme Disease, and for you it is the first thing that you say to them." Most people I may never see again. I tell them so they know because I did not know, and if I had known then what I know now, I would not have taken that one pill that my M.D. gave to me for the tick that was wedged in so far that they had to dig it out. My Lyme Literate Doctor believes one pill:kept the fever and reash from happening but allowed the bacteria to reproduce in my system. SO, be it! the people who create injustices to promote the suffering of human beings, have to answer to another order at some point in their life/death. I know this is true, and I know that it is true for all human beings. God being your idea of love, or perhaps it is just the consciousness of mankind? Without Love their is no God, and love can heal, if we allow it to enter our soul along with compassion, and antibiotics. I send you all my love and compassion, in your healings. Most Sincerely, Lisa Wilder-O'Malley

I have suffered since 1994 from lyme and didn't even know about ticks. In 2001 I pulled an engorged tick out of the back of my knee and all hell broke loose. It took 5 doctors at prestigious boston hospitals to finally find a real LLMD. I have been treated with oral antibiotics since 2001 and went off for one month in jan 2010 and had to go right back on because of the insomnia,headaches,stiff neck,fatigue,severe anxiety and the never ending pain in my knees and nerve pain in thighs while trying to sleep. On antibiotics I feel I can live somewhat of a life, but fear that my knees will give out soon. I treated posiitive in Jan 2010 for ehrlichiosis in the ER as I had such bad prolonged (weeks of) anxiety that I just wanted to give up and be done with life. I am 57,but feel 20 years older. My doctor was featured in the documentary "Under our skin" and still fights the fight. It is discouraging and sickening to have to deal wtih this lonely disease. It does make you feel crazy and I have the support of a psychiatric nurse practitioner and a therapist who are always there for me. God help us all.

thank you for standing up for all of us, thank you for speaking up and out for all of us.... 10yr battle i have fought, now it has taken my 17 yr old life and flipped it upside down.... THANK YOU!

Thank-you Jordon for your heart-felt letter. Thank-you for sharing your story and being an example to those who are fighting for their right to be treated. I have sent a letter to AG Blumenthal and Dr. Whitely, and I will be sending more. They need to hear from the patients who want and need the choice to be treated with long-term antibiotics. They need to know that they are not going away quietly. The IDSA guidelines continues to support the medical abandonment of these patients. I encourage you to have your letter and the email addresses sent to the online Lyme support groups. My 13 year-old daughter was allowed to develop late-stage neurological Lyme disease/babesiosis while being treated by physicians who trusted and swore by the IDSA guidelines. I fired those doctors and we are lucky that her medical care from her LLMD is still being covered by our insurance company. I am aware that this coverage could end at any time. Unfortunately I cannot fire the IDSA and it may be that a class-action law suit is the only feasible option at this point.

PS: This disease has consumed $500k of medical care for my son but if it had been diagnosed and treated early...it should have cost $5k or less. Geographic prejudice (there's no lyme in the south) and poor diagnostic lab work has been the culprit. A gag order should be issued for the IDSA until better diagnostic procedures are found.

Jordan, Thank you for your letter to the IDSA. I am happy to hear you have recovered. Best Wishes. Chelsea

I am so ANGRY at so called schooled, professionals in the medical field that make up the IDSA. These people are responsible for the suffering of many - how on earth are they able to sleep at night? I have suffered with Lyme disease for nearly 6 years. I am in slow recovery with antibiotics that have shown a big improvement with putting my life back on the path to recovery. I also found the tick still embedded so I have no doubts about my illness. I am thankful for my LLMD. I urge anyone who reads this to use the MEDIA in your local communities to put the word out about Lyme and about IDSA. The power of the media can be a very wonderful thing if you use it wisely. Best of all, it's free. Organizations like the IDSA will want us to stay quiet about who they are and what they are doing. Where I live, there are many cases of Lyme popping up..it's grabbing the attention of communities. Now is the time to use the MEDIA. SHAME ON YOU IDSA!

There was something that I should have mentioned. I live in an area where Lyme is not found. Hence, my limited knowledge of those that have been completely healed. I know of only five cases other than mine in a twenty mile radius. One of those has been cured. The other person I met online. I'm expectantly plodding along with the herbal cures.

Unfathomable! What other disease in this country has such controversy that surrounds it? I live in daily fear for my family of 4 that have been diagnosed with Lyme disease, we have health insurance but for how long? This is real open your minds and hearts we are real people suffering needlessly! Use your degree and your brains and open your minds to the truth and the facts that are blatently there if you would only choose to see. You have the ability to help. So won't you please! We need you!

Thank you Jordan for all you do in helping to raise awareness of Lyme Disease. I decided to take your lead and e mail the IDSA. I do not believe it will make the slightest diference but can you imagine how annoying it would be to receive thousands such e mails. I was lucky to have been treated by a very open minded doctor and to have recovered my health after 3 years of oral antibiotics something the IDSA would deny me. Best wishes

Mr. Smith, I coudn't have said it better. I have had Lyme, Babesiosis and Bartonella for 13 years, mis-diagnosed as palindromic rheumatism and rheumatoid arthritis until one year ago. I am now 6 months into long-term antibiotic therapy and when I feel hopeless, your courage and persistence, and your eventual recovery, give me hope. The people who have slandered Lyme sufferers as hysterical, ignorant crazies deserve professional ruin and eventual obscurity. The misery they have caused, the lives they have ruined in the service of the profiteering "health" industry and the advancement of their own interests is incalculable. Thank you for being such and eloquent voice for those of us who are still too sick to fight back.

Thanks to UOS and Jordon for your continuing efforts to help others.

I can not begin to convey how upset I feel about the IDSA's decision that the guidelines for Lyme don't need to be changed. Obvisiously, they have never suffered from this infection or any of the possible co-infections. Science needs to look at this disease as they do syphillis and tuberculosis.

i sent a long note earlier with other activism web sites & comments i'd made tonight; did it go thru since i don't see it posted? thx

I have a grand-daughter who has been diagnosed with lyme disease by a private clinic in the uk but has been unable to get anywhere under the national health system. She was bitten by a tick about 8 years ago and still has had no treatment whatsoever. She comes up against a black wall every time. She has now given up and is not even trying to get any treatment. It is appalling how this disease is going unrecognised by the authorities. What can we do ! nothing seems to be the answer, why when to everyone who has or knows about the disease knows how it affects people. Yes I think it is only going to increase if nothing is done. Why won't they listen ? what are they frightened of ? litigation-- I wonder ?