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Post by Admin/ Traveler on Aug 10, 2017 19:43:06 GMT
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Post by Admin/ Traveler on Aug 13, 2017 21:08:32 GMT
Another GREAT post from Carl Tuttle! The Association of Public Health Laboratories (Part 2)A little teaser from the article: "Quote from Scott Becker: “Lyme disease presently cannot be diagnosed based solely on a laboratory test because the tests still aren’t good enough,…”" Well, we knew that! But it's good that there are others starting/continuing to confirm that!!!
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Post by Admin/ Traveler on Aug 14, 2017 17:09:48 GMT
And, Part 3 has now been published!! And it's good!!! "The Centers for Disease Control stopped communicating with Dr. Lee after he uncovered a novel Borrelia in one of the serum samples tied to a patient in the Hudson Valley, who had been previously treated for neurologic Lyme disease." A teaser from Dr. Lee's letter: "The excuses commonly used to suppress using and development of direct DNA tests for the diagnosis of Lyme borreliosis include potential sample cross contamination, false identification of target DNA and lack of sensitivity. However, these are not technical issues which cannot be overcome by good laboratory practices. May I suggest that the APHL organize a national proficiency test project to advance the diagnostics in this area. Here is my proposal to the APHL." It's a great idea, and totally do-able!!! The Association of Public Health Laboratories (Part 3)
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Post by DJ on Aug 14, 2017 20:38:13 GMT
I think Carl Tuttle is the best on his lyme reports /writer, what ever u want to call him.. I find he is the best of all of them. He is all for us! Plus I love it he doesn't pull no punches with anyone!
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Post by alyeska on Dec 11, 2017 6:15:13 GMT
I just posted his petition AGAIN on my fb page. This time it has the Lyme billboard picture. I hope someone responds! Maybe some friends are signing it and just not commenting. I don't feel like I'm making much of a difference. At least the number needed to reach 50,000 signatures is getting lower though!
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Post by Admin/ Traveler on Dec 11, 2017 17:02:55 GMT
Well, the way I see it, is if I do what I can to get the information out there, then I've done my part. I can't force anyone to do a thing, so it's their responsibility to step up and actually get involved, once I get the information out there for them to see anyway.
All my facebook page is about any more is Lyme stuff - I stopped "participating" on Facebook in most any other way (I do have a couple of groups I'm still active in) because I don't see it as a good thing any more.
Did you know that there has been an instance where a person was told he was lying about his condition, and that because he was so ill that abx treatments didn't work and he was told - by those on Facebook - that there was no hope for him, so he took his life. And that's just one of many, many accounts I could give about that kind of treatment.
As I said, I don't see Facebook as a nice place any more. But I do recognize that many still do, and some of those are actually watching my page, so I continue to post good, relevant Lyme and company information.
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Post by alyeska on Dec 12, 2017 5:39:32 GMT
Well, the way I see it, is if I do what I can to get the information out there, then I've done my part. I can't force anyone to do a thing, so it's their responsibility to step up and actually get involved, once I get the information out there for them to see anyway. All my facebook page is about any more is Lyme stuff - I stopped "participating" on Facebook in most any other way (I do have a couple of groups I'm still active in) because I don't see it as a good thing any more. Did you know that there has been an instance where a person was told he was lying about his condition, and that because he was so ill that abx treatments didn't work and he was told - by those on Facebook - that there was no hope for him, so he took his life. And that's just one of many, many accounts I could give about that kind of treatment. As I said, I don't see Facebook as a nice place any more. But I do recognize that many still do, and some of those are actually watching my page, so I continue to post good, relevant Lyme and company information. Oh my gosh... that is unbelievably sad. I think I told you that I had some weird guy I hardly knew bugging me about one of my Lyme petition posts on fb too. I hardly know him, and he just started heckling me about it. (I accepted his friend request years ago when we were both volunteering for the same charity. I'm much more selective about my friends now!) Luckily another friend of mine who has chronic illness jumped on him, so he backed off. Facebook is weird. I refuse to participate in any negativity, and I rarely get on unless I need to get in contact with one of my relatives in other countries. So far I haven't had a single comment or like on any of my Lyme petition posts. If I post something funny then I get a tons of likes though! I really just don't think most people understand it. I've said before that it's not like cancer where it's easy to understand and be sympathetic about. My sis-in-law who had a cancerous tumor removed over a year ago is so much healthier than I am! No more treatments, no meds, just scans to make sure it's not growing back. She lives a completely normal life other than having the scans now, and she's so proud to be a cancer survivor that her profile pic on fb says "Not all cancers are pink." I haven't even come out of the Lyme closet yet to most of my friends! I'm afraid they won't even believe me. What a difference there is in the way we're treated. It's heart breaking. No wonder people commit suicide!
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Post by Admin/ Traveler on Dec 12, 2017 17:53:05 GMT
Unfortunately, I don't believe things will change until we "force" them to change. So how do we do this? Well, my opinion is that we need to not be silent. We are all different, and not everyone is "up to" dealing with being harassed by those that aren't educated enough about the risks involved or the issues we face - but we can choose to not be silent still.
No one "has to" post about it on Facebook. There's Google+ (Google plus), Twitter, and we can sign petitions and get our story/our views/the truth out there still. There are lots of ways to make our voices heard, so I do ask that we all do what we can - and that's how we force change.
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Post by Admin/ Traveler on Dec 28, 2017 16:46:59 GMT
Carl Tuttle has done it again!!!! Please help!!! Diagnosis and management of Lyme neuroborreliosis"Dear Ms. Ibrahim, I would like to call attention to the following statement found in the Halperin paper: “….there is no evidence that prolonged post-treatment neurocognitive symptoms are related to nervous system infection - either as a triggering event or as a cause of ongoing symptoms.” You might want to read the following case study from Stony Brook Lyme Clinic. I understand the patient received thirteen spinal taps, multiple courses of IV and oral meds, and relapsed after each one, proven by CSF antigens and/or PCR. The only way this patient (said to be a physician) remained in remission was to keep her on open ended clarithromycin- was on it for 22 months by the time of publication. Seronegative Chronic Relapsing Neuroborreliosis. www.ncbi.nlm.nih.gov/pubmed/7796837Lawrence C.a · Lipton R.B.b · Lowy F.D.c · Coyle P.K.d aDepartment of Medicine, bDepartment of Neurology, and cDivision of Infectious Diseases, Albert Einstein College of Medicine, and dDepartment of Neurology, State University of New York at Stony Brook, New York, NY., USA Eur Neurol 1995; 35:113–117 (DOI:10.1159/000117104) Abstract We report an unusual patient with evidence of Borrelia burgdorferi infection who experienced repeated neurologic relapses despite aggressive antibiotic therapy. Each course of therapy was associated with a Jarisch-Herxheimer-like reaction. Although the patient never had detectable free antibodies to B. burgdorferi in serum or spinal fluid, the CSF was positive on multiple occasions for complexed anti-B. burgdorferi antibodies, B. burgdorferi nucleic acids and free antigen. ________________________ You may want to ask Dr. Halperin why he excluded this case study from his so-called “expert review.” Might I remind you Ms. Ibrahim that selective use of literature, only citing studies supporting Halperin’s viewpoint cannot be considered an unbiased critical review. Please see the attached letter addressed to CDC Director Brenda Fitzgerald, MD highlighting yet another case of persistent infection after antibiotic treatment along with autopsy reports showing histopathologic findings consistent with neurologic manifestations of chronic Lyme disease. Letter to CDC Director Fitzgerald: www.dropbox.com/s/xaul84dqmqgbre0/Brenda%20Fitzgerald%20MD%20Director%20CDC.docx?dl=0Please be advised that John J Halperin has been named in a racketeering lawsuit here in the United States. The court document can be found at the following link: (I suggest you read it) www.courthousenews.com/wp-content/uploads/2017/11/LymeDisease.pdfRespectfully submitted, Carl Tuttle Independent Researcher Lyme endemic Hudson, NH USA" Come on!! Let's support his efforts!! If you haven't signed the petition, then please do!! If you aren't sharing it, please do!!! This helps to inform people that aren't aware of what's going on - the deceptive behavior, if not actual crimes, needs to be exposed and the only way we have is to make people aware of these "dealings" and to expose them for what they are! This has been the status quo for the last 40 years with Lyme disease!!
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