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Post by Sidney on Nov 29, 2007 15:29:54 GMT -5
I posted this under Lyme Support - Oklahoma, but would like to post it here as well. Dear LDSG Members, I’ve been contacted by a lab out of Florida in regards to a new test recently certified by the state of Florida that can identify the spirochete (Bb) rather than antibody reaction. Just started to do my due diligence but wanted to give everyone a heads up. Per my conversations with their president they are willing to discount the cost of testing if done in bulk. They are limited to a maximum of 25 tests per week, and the blood must be drawn Mon-Wed and sent overnight to assure best results. I’m looking for group members willing to participate in the bulk testing in order to support our efforts in getting Lyme recognized in Oklahoma. The testing should run around $150 and I don’t know yet about insurance reimbursement. www.lddtesting.com/ - They promote the test as: A LYME ANTIGEN TEST BY FLOW CYTOMETRY - that is definitive in the detection of Borrelia burgdorferi, the causative agent in Lyme Disease. As I get more information I will keep everyone informed. Janet Segraves LDSG: Lyme Disease Support Group of Oklahoma Providing Education, Public Awareness, & Patient Support janet@ldsg.org * 405-359-9401 * www.ldsg.org PO Box 6845, Edmond, OK 73083 LDSG is an informal group led by volunteers for the purpose of providing education, public awareness, and advocating for those suffering from bacterial infections such as Lyme Disease, STARI, and other tick-borne disorders. Our mission is to eliminate the isolation felt by those affected, empower members through information and support, exchange experiences and coping skills, and assist family and friends of patients. LDSG interacts with federal and state agencies, medical schools, health care communities, research centers and educational venues, national organizations and foundations; and participates in public policy and legislative efforts, insurance and government assistance issues. Meetings are normally 11:00am-12:30pm rotating between Oklahoma City and Tulsa. Admission is free and open to the public. For more information visit www.ldsg.org or email janet@ldsg.org.
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Post by overandover on Nov 29, 2007 15:56:41 GMT -5
Sidney I've always wanted the test. I had the elsa (I think that's what it was called, don't know for sure) anyway I was only band 41 pos. The Lyme said you have chronic lyme, didn't care what the test said. OK (man I'm so darn long winded) and really I talk very little in person, I promise I won't talk no-stop at our future. Past Morgies Picnic. Anyway I've been on Doxy for a very long time and wonder would that effect the test. I'm sure I could get Dr. Matthews to draw the blood. He did sell his practice and is moving to Navada to open a treatment center. I'm going to miss him so much. He is evrything a doctor should be. I'll call and ask him if the doxy would effect the test so count me in. He did order the Igenex test last year and fed X lost my blood Dr. Matthews said I'm treating the Lyme regardless of the test so save your money. Please count me in. Love, Sue
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Post by laylo on Nov 29, 2007 17:40:58 GMT -5
Please count me in.
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Post by godog on Nov 29, 2007 18:51:58 GMT -5
Yes, count me in Sidney.
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Post by godog on Nov 29, 2007 18:52:39 GMT -5
Do we have to live in OK?
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Post by ladybug on Nov 29, 2007 21:18:52 GMT -5
I would like to be tested. Does a Dr. have to order the test from this lab?
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Post by betsy on Nov 29, 2007 22:28:06 GMT -5
I think there needs to be a medical prescription for a "draw" of blood to ship to the lab. Many labs that draw blood have a thing about "in house" handing and chain of command. It takes a doctor /practitioner that dots the i's and crosses the t's to get the blood released so it can be mailed overnight to the desired and specified lab.
I'm interested because it has been over a year since my last Lyme test. Another specialized lab would be an interesting comparison with Igenex results. I await more information to evaluate how this could be managed.
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Post by prevenge on Nov 30, 2007 0:40:23 GMT -5
this made my day.
thanks sydney.
-M
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Post by Sidney on Nov 30, 2007 0:51:26 GMT -5
Hey, folks, I was simply sharing information from our wonderful Lyme Leader here in Oklahoma who is so ill herself I am always blown away by her total dedication to all who have Lyme. Here's what Janet wrote to Oklahoma members: Dear LDSG Members, I’ve been contacted by a lab out of Florida in regards to a new test recently certified by the state of Florida that can identify the spirochete (Bb) rather than antibody reaction. Just started to do my due diligence but wanted to give everyone a heads up. Per my conversations with their president they are willing to discount the cost of testing if done in bulk. They are limited to a maximum of 25 tests per week, and the blood must be drawn Mon-Wed and sent overnight to assure best results. I’m looking for group members willing to participate in the bulk testing in order to support our efforts in getting Lyme recognized in Oklahoma. The testing should run around $150 and I don’t know yet about insurance reimbursement. www.lddtesting.com/ - They promote the test as: A LYME ANTIGEN TEST BY FLOW CYTOMETRY - that is definitive in the detection of Borrelia burgdorferi, the causative agent in Lyme Disease. As I get more information I will keep everyone informed. Honestly, that's all I know. The lab is in FLORIDA, not Oklahoma. They appear to limit testing to 25 tests per month. Blood must be collected (drawn) Monday through Wednesday and sent overnight. Doctors-Labs, do this draw and mail thing every day, so this is not a biggie. Usually a "draw" costs about $5.00, but that may vary from state-to-state. Here's the website. Contact them if interested. www.lddtesting.com/ I've been tested through both Bowen and Igenex and am definitely positive according to my LLMD in Springfield, Mol, but not according to the CDC standards. I would LOVE to know if the diagnosis would change at all through this "new" Lab.
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Post by Sidney on Nov 30, 2007 13:49:59 GMT -5
Many thanks to KMarie for being so on top of everything, and to all who continue to fight for recognition of our disease.
Congratulation to all who have maintained a sense of humor. Sometimes I wonder if I'll ever get mine back, then I read something hilariously funny here and find I still have a little of it left.
Princess Ali, would the cookie crumbs in your attic feed my delusions?
I baked chocolate chip cookies today for small grandchildren...such a good granny am I.....and will bake more when we hide out in your attic and console ourselves by binging on cookies and furthering our attiction.
Perhaps Moe would care to join us? My drink of choice is Classic Coke, another attiction of mine.
Smiles.
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Post by belikewater on Nov 30, 2007 13:51:44 GMT -5
Thanks, Sidney. I do not think any tests will change the CDC criteria. Their criteria are supposed to be for monitoring, not diagnosis. Yeah, we all know how that's working for us.
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Post by Niels on Nov 30, 2007 19:44:09 GMT -5
When Kaiser for the umpteenth time tried to force me to take their Bogus Unilab or Labcorp test for Lyme, I refused, on the grounds that I insist on having "full band testing" as i have not received the Lymerix vaccine and don't need the reactivity bands I actually have being cancelled out by tests meant for surveillance not diagnosis. This of course went completely over the kaiser Infectious disease doctor's head, but at least got him to reply "I am not a Lyme expert." and ""I" have not labeled you delusional." -- which is always good to have in writing. Of course, the above didn't work. THey don't want to actually run tests that'll show something, because then they'd be obligated to "fix" it. Just like they refused to run tests for HHV-6, Mycoplamsa, etc... because they didn't want to be obligated to treat. So I got the tests from my LLMD and of course, they came back positive. Next step is to try to get kaiser to do something about "tests brought in from outside"... they prefer to run their own internal tests that have the "normal" and "low" and "high" values skewwed from industry standards towards values that'll have less people showing up "abnormal" -- again, because if the lab says "normal" they feel no obligation to do anything. See "Kaiser testing theory" in www.kaiserpapers.info/co/conten.html for details. Maybe your HMO subscribes to the same theory?
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Post by robertalouise26 on Dec 1, 2007 2:23:44 GMT -5
Niels it is GREAT TO HAVE IT IN WRITING Big plus for you dear friend!!!! love and best wishes. Roberta.
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Post by Orion*** on Dec 1, 2007 5:01:37 GMT -5
I posted this under Lyme Support - Oklahoma, but would like to post it here as well. Dear LDSG Members, I’ve been contacted by a lab out of Florida in regards to a new test recently certified by the state of Florida that can identify the spirochete (Bb) rather than antibody reaction. Just started to do my due diligence but wanted to give everyone a heads up. Per my conversations with their president they are willing to discount the cost of testing if done in bulk. They are limited to a maximum of 25 tests per week, and the blood must be drawn Mon-Wed and sent overnight to assure best results. I’m looking for group members willing to participate in the bulk testing in order to support our efforts in getting Lyme recognized in Oklahoma. The testing should run around $150 and I don’t know yet about insurance reimbursement. www.lddtesting.com/ - They promote the test as: A LYME ANTIGEN TEST BY FLOW CYTOMETRY - that is definitive in the detection of Borrelia burgdorferi, the causative agent in Lyme Disease. As I get more information I will keep everyone informed. Janet Segraves LDSG: Lyme Disease Support Group of Oklahoma Providing Education, Public Awareness, & Patient Support janet@ldsg.org * 405-359-9401 * www.ldsg.org PO Box 6845, Edmond, OK 73083 LDSG is an informal group led by volunteers for the purpose of providing education, public awareness, and advocating for those suffering from bacterial infections such as Lyme Disease, STARI, and other tick-borne disorders. Our mission is to eliminate the isolation felt by those affected, empower members through information and support, exchange experiences and coping skills, and assist family and friends of patients. LDSG interacts with federal and state agencies, medical schools, health care communities, research centers and educational venues, national organizations and foundations; and participates in public policy and legislative efforts, insurance and government assistance issues. Meetings are normally 11:00am-12:30pm rotating between Oklahoma City and Tulsa. Admission is free and open to the public. For more information visit www.ldsg.org or email janet@ldsg.org. ++++Hi Sid- That lab is BOWEN? also----I'm looking for group members willing to participate in the bulk testing in order to support our efforts in getting Lyme recognized in Oklahoma. ~~~ It already has--I visited a state park back in the 80s --Little Sahara, mid north OK---A few years ago I found a map indicating lyme being endemic in N. OK. Yes , I got bit by a nymph in the tall grass-- actually I've been sick ever since. O***
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Post by Niels on Dec 1, 2007 19:29:24 GMT -5
I believe it is still Bowen, under a different name, or at least that's what the link in my post above implies (link is inside my quoted email to my dr about other labs that can be trusted w/ lyme tests other than igenex -- since he just spent 1/2 hour dissing my LLMD and Igenex and saying all sorts of misinformation about igenex -- the same crap that got printed in the N Y Times but was untrue, regarding their CLIA certification -- NYT never retracted the misinformation they printed.) And yes, my doctor was doing exactly what they told him to do in the kaiser guidebook on lyme regarding Igenex . Kaiser has had it in for Igenex for a long time and has people inside the CDC that have been harassing them for at least the last decade. And they hate my LLMD because he's used Igenex tests plus his own diagnosis of Lyme and treatment of Lyme to get a Kaiser MS patient out of her wheelchair. As an added bonus, she sued Kaiser and won. Kaiser corporate has drawn a line in the sand regarding Lyme disease. They've already lost tons of money due to the CDC and governmental perceverence into proper testing and treatment for AIDS -- and it's been nothing but a huge financial loss for them as an HMO. They see Lyme as a similar disease -- very costly to treat, w/ potential lifetime treatment needed. So they're doing everything they can to make sure proper Lyme diagnoses and treatment never sees the light of day. Because as soon as it does, they're going to be losing even more money. Now, perhaps you'll understand why Kaiser was contracted to study morgellons. So they can dually continue to deny the existence of lyme in a large population of patients, and also ignore morgellons too. lyme.kaiserpapers.info :
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Post by prevenge on Dec 3, 2007 4:57:08 GMT -5
could someone please point me to that lyme disease support group forum .. where they candidly through private messages.. reccommend local lyme literate doctors? (instead of broadcasting their names internet-wide) ..
i lost the URL .. could someone PM me it please. thanks
-M
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Post by prevenge on Dec 3, 2007 5:05:59 GMT -5
I believe it is still Bowen, under a different name, or at least that's what the link in my post above implies (link is inside my quoted email to my dr about other labs that can be trusted w/ lyme tests other than igenex -- since he just spent 1/2 hour dissing my LLMD and Igenex and saying all sorts of misinformation about igenex -- the same crap that got printed in the N Y Times but was untrue, regarding their CLIA certification -- NYT never retracted the misinformation they printed.) And yes, my doctor was doing exactly what they told him to do in the kaiser guidebook on lyme regarding Igenex . Kaiser has had it in for Igenex for a long time and has people inside the CDC that have been harassing them for at least the last decade. And they hate my LLMD because he's used Igenex tests plus his own diagnosis of Lyme and treatment of Lyme to get a Kaiser MS patient out of her wheelchair. As an added bonus, she sued Kaiser and won. Kaiser corporate has drawn a line in the sand regarding Lyme disease. They've already lost tons of money due to the CDC and governmental perceverence into proper testing and treatment for AIDS -- and it's been nothing but a huge financial loss for them as an HMO. They see Lyme as a similar disease -- very costly to treat, w/ potential lifetime treatment needed. So they're doing everything they can to make sure proper Lyme diagnoses and treatment never sees the light of day. Because as soon as it does, they're going to be losing even more money. Now, perhaps you'll understand why Kaiser was contracted to study morgellons. So they can dually continue to deny the existence of lyme in a large population of patients, and also ignore morgellons too. lyme.kaiserpapers.info : this is because Lyme is a biological warfare agent created in Plum Island by project paperclip hired nazi scientists.. now under homeland Security reign.. to slowly saturate the populace with a stealthly, silently creeping pathogen that is difficult by standard means to identify.. and incredibly difficult to treat via pressure from above towards actual treatment specialists... perfect bio warfare agent i one unable to be discovered by the targetted population.. one that slowly via baby steps.. reduces caloric efficiency.. and cognitive ability. as opposed to massive swathing wipeout pathogens... that only cause uncontrollable chaos. the math fits.. the logic fits.. the irony of it all is thus.. the individuals now being infected and communicating with one another are not only becoming more AWARE of the circumstances prevalent to their situation.. but becoming more aware and unified as a population which.. through certain means.. will evoke litigation and eventual removal of certain institutions as we know them.. then again.. maybe that's part of the forcasted.. layered upon layered probability oriented - directed agenda this all could come to a front.. and become the eventual demise of the medical system as we know it.. as Hillary and Obama are pushing for. this could very well be their massive build up ... to the breaking point here.. where a medical system revision is the only answer for the millions infected with Lyme.. and other co-infections. EVERYTHING about this suffering we endure.. has POLICY written all over it. -M
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Post by Niels on Dec 3, 2007 23:59:45 GMT -5
this all could come to a front.. and become the eventual demise of the medical system as we know it.. as Hillary and Obama are pushing for. Sounds good to me. Sign me up! Socialized medicine, by nationalizing all oil companies and natural resources, and using energy profits to fund our crumbling infrastructure and public health. Two years after Katrina and a major city in the US looks like this? tinyurl.com/ytuaye
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Post by prevenge on Dec 4, 2007 0:26:01 GMT -5
cookie monster has a crumb or two left in the attic just for you...... you gimme coooooookie. -M
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Post by prevenge on Dec 5, 2007 23:19:11 GMT -5
thats right. must commemorate this occasion...... -M
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