FAQ/Help |
Calendar |
Search |
Today's Posts |
|
12-31-2007, 08:47 PM | #1 | ||
|
|||
Member
|
im putting this here in order not to step on anyones posts, but this has to do with the lyme posts in the good, bad neuro thread. When i had a spinal tap, lyme and west nile for that matter was tested for. Id be surprised if that wasnt the case with Alan also. So if you have the report from the spinal tap take a look and see. The report i received goes into some detail about lyme, which was negative by the way , as well as blood tests i have had along the way several times.
I would not expect NYC doctors or hospitals to be as up on lyme disease as places where tics are common. Stony Brook on Long Island from what i hear, would be a much better place to be examined or tested for Lyme. They get a lot more of it and have developed specialization in it. Im not sure if you can get blood sent there to be tested but you could call and ask. |
||
Reply With Quote |
12-31-2007, 10:18 PM | #2 | ||
|
|||
Magnate
|
There is a less active board here on Lymes'
http://neurotalk.psychcentral.com/forum91.html And there are many, many other resources more active about lymes around. Thing is, like many PN's Lymes' is an auto-immune disease that 'mimics' soo many other things! Add to that mix the frustrations that there are maybe 2-3 somewhat reliable tests for it in the world...and their 'accuracy' is NOT guaranteed. Worse yet, add that once diagnosed, treatments aren't a guarantee [I have 3-5 friends with IT!] and often have to be repeated...successfully or not. {GEE SOUND FAMILIAR?} Joe, I could almost agree that IVIG treatments are sometimes used as a diagnostic tool...but I have found and read insurance company protocols for the essential testing that MUST be done prior to 'trying' IG therapies...IT IS EXTENSIVE...probably to justify the exhorbitant costs of the IG. I had all but the sweat test stuff and the biopsy...I refused that option by one neuro [not on my 'good' list] as he seemed overeager to DO it..in otherwords he wanted the procedure under his 'belt'....When my own insurance company's policies wouldn't cover it unless as a last resort-when other tests are on the 'line' as 'definitive'. Honestly, where I now live, what activities I USED to do, and all, I am very surprised I do not have Lymes'. I should? But Joe? How does one living in a city...total curbs...possibly get Lymes? I've lived urban, suburban, and spent heaps of time in the country! There one can get Lymes' but otherwise? I'm having a hard time here connecting dots... I'll spend time tonite looking up reputable Lymes' references...I do hope my friends will add to this as well..If they aren't asleep? Hugs to all!!! - j |
||
Reply With Quote |
12-31-2007, 10:51 PM | #3 | ||
|
|||
Member
|
believe it or not there are coyotes in the bronx..ha
there are some big parks in queens, brooklyn and the bronx, but ive never heard of anyone getting ticks on them from them, doesnt mean it doesnt happen but im sure no where near as likely as in suffolk county, long island or new jersey i did a lot of hiking in the woods, ny, nj and pennsylvannia, which is why i persued this possible cause. |
||
Reply With Quote |
01-01-2008, 12:24 AM | #4 | ||
|
|||
Senior Member
|
Hmmm my son's friend who moved to where Mel lives senior moment
saw a rat he feft his girlfriend could ride on,would that be possible? Well it's the same way in Detroit where I use to work...hmmm!!!Sue |
||
Reply With Quote |
01-01-2008, 11:47 AM | #5 | |||
|
||||
Magnate
|
When I got Lyme...I lived in the woods...sand country. I have a hunch my dog had the tick on him, and the tick got on me from the dog.
Deer ticks are not the typical wood ticks we picked off by the dozens on a daily basis.... I do not live up there any more, but talk about ticks....it literally dripped wood ticks up there. Of couse we have deer and the white footed mouse. I lived way out in the woods, and of course, we were outside in the summer. I know rural NY and Connecticut do have a Lyme problem. I am in the midwest and we have it here. Fortunately for me, I had a rash, unfortunately, the docs thought 20 days of amox would cure me. I never did seroconvert to our 'standards' as the antibiotic therapy interrupted the climbing titer, which was almost at the state cut off line...back then the state lab of hygeine did the tests...apparently they screwed up on a lot of them. I did have my blood and I believe my spinal fluid sent to Stonybrook and it is negative. I had blood from another lab come back positive. I don't think I have any active infection. If I have an autoimmune process going on...it hides pretty well. I had ONE high ANA....that is it. I do not think they know what they are doing with Lyme and it seems to have lost the LYMELIGHT so to speak. I won't deny it could be at least part of my problem, but, at this point, there really isn't a thing they could do. Even if I got past insurance....which is very highly unlikely. I did have IVIG and it did not change my test results which were repeated after it. I had steroids, which I think made matters worse....I dunno. |
|||
Reply With Quote |
01-01-2008, 12:55 PM | #6 | |||
|
||||
Wise Elder
|
I just wanted you all to know what I did. I went to a website about Lyme Disease. They have a form where, in which you can fill out all the data and test results that you do have, and they will read it and tell you what they think. The name of the website is American Society for Clinical Laboratory Science.
I sent the form yesterday, and they just reponded to me. (on New Year's Day , can you imagine). Here's what they said. I used my legal name, Elizabeth. My actual first name is Elizabeth and not Melody. Here's what they wrote to me: Hello Elizabeth, Thank you for sending your question to the website of the American Society for Clinical Laboratory Science. I am so sorry to hear of your husband''s health issues and thank you so much for typing all these data. Based upon the IgG and IgM Western Blot tests, your husband does NOT have Lyme''s disease. Research now shows that 80-95% of disease is caused by stress. I can give you some additional information, if you are interested. I hope this answers your inquiry. If you have further questions or want to discuss this more, please contact me. I wish you the best. Again, thank you for using the American Society for Clinical Laboratory Science Consumer Information Web page. As a member of this profession, I am pleased to represent thousands of clinical laboratory scientists who perform millions of laboratory tests yearly. The clinical laboratory is composed of several subspecialty areas: Chemistry, Hematology, Immunology, Microbiology, and Transfusion Services and provides over 70% of the objective data that physicians need for accurate diagnosis and treatment. Kathy Waller, PhD, CLS (NCA) ASCLS Consumer Response Team waller.1@osu.edu -------------------------------------------------------------------- Okay, COMMENTS ANYONE!!!!!! interesting, huh?? mel
__________________
. CONSUMER REPORTER SPROUT-LADY . |
|||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
Symptoms of Lyme Disease | Gluten Sensitivity / Celiac Disease | |||
well it's now offical, I have Lyme disease | Chronic Pain | |||
Lyme Disease vs. PD | Parkinson's Disease | |||
Old news maybe: Lyme Disease | Parkinson's Disease | |||
Lyme Disease discussion | Gluten Sensitivity / Celiac Disease |