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Luvdtoteeup
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I called and I should have just guessed what this joker was going to tell me. First of all, he is not a Dr., just a spokesperson for them. He said he has been getting a lot of phone calls from people like me.. Keep flooding the phone lines, cause this guy was something else, but of course he is on IDSA's side. He was trying to tell me that what I have had is not Lyme Disease, even after being CDC positive from a reputable lab, and all the treatment I have had should have gotten rid of my Lyme Disease over the past few years, and that my CDC testing that came back positive even after all the negative testing was done over the years was because I must have been bitten again. I said by what? That also these bigger, more reputable labs, without mentioning their names, are lying to the public. I never had a tick bite, or the rash like I did back in 1995. I said what do you mean, like being bitten by a mosquito?? Because they are carriers also? He wouldn't comment on this other than stating I had to have had another bite. I said I have had all the same symptoms that I had since the initial tick bite in 1995, and I never got rid of this bacteria because I have felt awful ever since being bitten and the same symptoms going on. He said that I must have some other disease going on and I need to have that further investigated with it. He said he felt for me with what I have gone through. Yeah, Right!! I asked him if he could sleep at night with the lies that he is telling people like me. He said he sleeps just fine, thank you for asking... I said I know that there will be a judgement day and that you and all the other IDSA Dr.'s, researchers, scientists, will all be judged on what you are doing to all of us suffering, I can guarantee you this.. He had no comment, other than that's your opinion. He said that the NIH has done their own studying and they don't believe what we are dealing with is Lyme Disease. I said how can you explain how Mandy Hughes on CNN this morning has gone from almost Parkinson's like symptoms to how she looked today? He said, yeah didn't she look good. How can you explain her getting better on antibiotics, if this is Lyme Disease that she is dealing with? He couldn't explain it. He also told me that ILADS were lying to the public on their own research. I said what? You can't believe their own research. I said their research and evidence and my own physical evidence is enough to prove to me that what I am dealing with is Chronic Lyme Diseae, and that it's not some disease that you guys at IDSA are trying to make up and say that I have something else other than this Disease still going on. What a JOKE!!!!!! Also he said that for my feet and hands swelling up after coming off the antibiotics is a reaction to the inflammation that the antibiotics can trigger to happen after taking them. Not any Lyme Disease still active. I can't believe these idiots... Please, everyone out there call this guy and voice your opinions also, and your symptoms, and what you are dealing with also. I hope this guy gets bitten one day, and doesn't get the rash.... I am sorry I am mad right now, but I have lost my career to this hideous disease and to give this guy my story and have him lie to me is just something else in this day and age.. UNBELIEVABLE!! I told him that there will be a day that celebrities and other high people in this society are going to make a huge impact on what is going on, you watch I told him. Then we will see who are the real jokers on this Disease and we can Debate over that. There will be a day when we will get justice for this, I said.. He also laughed about Attorney General's Blumenthal's investigation, and that they are not admitting to anything by having the guidelines looked at again. He said nothing is going to change the IDSA's stance on this disease and to give it up basically.. He also said that they are not covering for the insurance companies. He said they are a seperate issue and to deal with them seperately from them and that they are not covering for them... Where am I getting that information, he asked me. I am so upset right now, I want to throw up over talking to this guy. I should have known what was going to be said to me, and him lying like he did... God help all of us with this Disease, I pray.... Dawn. |
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tomro62
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Dawn, God love you, sweetie, and that great big heart of yours. You took on a no win situation, and I thank you for speaking for me and all those who suffer. I appreciate your desire and passion immensely. Let this one go and enjoy the fact that you used your right to speak and let your voice be heard. That is a triumph in itself, no matter how big a jerk he was. You did great. Tom I am not a doctor, and nothing I say here should be taken as medical advice of any kind. |
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Clayton72
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Holy Crap! I appreciate you calling him in the first place. Well, someday when he contracts Lyme disease and he can't figure out what the heck is wrong with him -- he'll understand. Well, no, he won't - he'll spend $100,000 on treatments that don't work. This whole thing is terrible. Dawn, you are doing a good job reaching out to the people but maybe you should take a break and relax so you don't get sicker over this! We all know that we aren't nuts so maybe we need to spend extra time educating those around us who understand and trust us instead of the pig heads at the top. At least for now... I know that my friends all understand Lyme more than they ever did before. They know I'm not making it up b/c they can see how much better I am after my treatment. If it wasn't Lyme, the treatment probably wouldn't have worked that well. I'm sorry you had to deal with that Jack A--. Thanks for trying! |
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Luvdtoteeup
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Hi Tom and Clayton, This is my passion right now to try and pour out of my soul what is left of me to help others. I am not getting sicker by doing what I believe that God wants me to do and to not let this happen any longer to all these other sick souls out there. This is what I hear from my heart... I feel so much more empowered by not letting this keep going on like this. It will take numbers to get this to stop and I am 1 out of how many that is not just going to sit here like a bump on a log and say poor me. I have to use what is left of me from this disease to make an impact on other people's lives. If I died tomorrow, and I didn't do anything today about what is happening, then I would feel worthless to our society. My Father has had a lot of important roles in our Community, and he has always told me since I was a little girl to always voice your opinion even if somebody doesn't like what you have to say. Say what is on your heart, this is his motto. I am disabled right now, could I get worse, yes, but gall dang it, I am not going to let these people intimidate me or let me walk away with my tail between my legs. This is how I see this debate on this disease.. I am living proof of what is going on, so are you guys. I know things will change, but if nobody has voiced what is going on with them over the years, then where would we be at right now?? Yes, I am motivated, and willing to sacrifice my time and devotion to making a difference, because I am passionate when it comes to something I strongly believe in and this is where my heart is at in this time of my life. I am a driven and very focused individual. I would never have become a Professional Golfer if I wasn't.. I was the 10th woman out of over 300 men a few years back, that were accepted into the PGA for teaching and becoming a Head Professional for the state of Minnnesota. I didn't get there by just sitting back, I perserveered, and pushed myself to prove a point that women are just as capable of becoming a PGA instructor as any man is.. This is how driven I am. I am O.K. with my health where it is right now, and that making connections with people about this disease and the truth is what keeps me going... There are days I wish I was dead, but I am not going to let them BAS---DS win!!! This is my opinion.. This is what my Dr. that is treating me calls them also.. If I don't keep up the fight, I will just give up, and that is not me... I am a true fighter when it comes to something I am believing in.. Thank you for your comments and inspiration of trying to do something.. This is all I am asking of my life at this time, to just do something, anything, wrong or right, it was on my heart this morning and every day and I listen to what I feel, and go with it... Dawn. |
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Clayton72
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You go girl!  If it's not taking your energy from healing then I say GO GO GO! Thank you for fighting for all of us! |
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tomro62
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Dawn, I feel better doing things as well. I can't sit still and let this thing go. Being close to Washington DC, I'm working the political angle on this, trying to get the research bill before the Senate. Congressman Pallone of NJ has effectively ended any chances of the House hearing the bill. He has already sided with the IDSA, saying that he believes we should "wait a year or two", after the investigation in to the IDSA guidelines is complete. In other words, they've paid me a lot of money to stop things in my sub-committee. The only chance is on the Senate side. My goal right now is to get the entire Maryland congressional delegation to hold a news conference on the steps of the Capitol, and demand that one of the bills be sent for a hearing as soon as possible. I am hoping to have this done after I convince them to go to a screening of the Under Our Skin documentary. I'm a few committments short at this point, and I am very persuasive. I will let everyone know as soon as I hear of something that will happen. We must keep fighting the good fight, and to remember to always be better than the opposition. We must out class them, out last them and out shout them...all the time having a smile on our faces. Tom I am not a doctor, and nothing I say here should be taken as medical advice of any kind. |
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AnnF
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Way to go Dawn and Tom. You speak volumes for all of us. Someday they will get it, until then we will just keep plugging away. Take good care Dawn and Tom, thank you both, Ann |
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Luvdtoteeup
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Thank you Tom, Clayton, and Ann Tom, they have paid you in your sub-committee to stop pursuing this right now? What can we do as a group of sufferors in helping you get something to the Senate and getting this news conference you are talking about? A Petition possibly? I am behind you 1000% for what you are doing on behalf of all of us.. The good fight will be one by us, I know that. This kind of inhumane treatment should not be tolerated.. I will personally do, sign, or whatever it takes to help you in any way, shape, or form. The only way to force change, is by voicing change.. I am a very strong believer in this attitude. I am on your side, and I will be a volunteer at anytime to stand on the Front Lines of this Battle WE ARE ALL IN... Thanks for all you are doing. It does make a difference.. Dawn. |
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denise17
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Great posts Dawn!! Way to go!! Even though you might not have influenced this jerk you must have at least gotten some satisfaction over being able to give your point of view. You are one of the most abused by the medical establishment lyme patients that I know. I continue to be amazed at your strength. I really hope you get somewhere with your workman's comp. case, you deserve to win. Good luck and take care, Denise Denise |
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denise17
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Thanks Tom also for all you are doing. Please let us know if we can help. Denise Denise |
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