Lyme disease
 

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.

Joe, thanks for this!
 

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!!! :hug: - j

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.

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!!!:eek:Sue

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.

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

What is that about?
 

Is this a real laboratory, or some place that sells supplements too?

While stress is a factor for some, I think the major causes of disease are
infections and toxins (cancer).
Stress in some form is actually healthy, keeping us tuned to being active.
Excessive stress however leads to impaired immunity and the risk of acquiring an infection more easily.

Mrs. D.

Yesterday, I just googled Lyme Disease, and this website popped up. It's got lots of links and pages (and I don't think this is the kind of website that sells supplements, at least they don't appear to be wackos or anything like that).

Here is their home page. Let me know what you think.

http://www.ascls.org/index.asp

I was embroiled in this Lyme controversy for years....and the longer I was involved...the more I realized that either end of the spectrum...was...far out.

Alan likely doesn't have Lyme...however, to say that virtually all disease is caused by stress is nonsense....yes, stress plays a role in many health problems, but so does heredity and infection. It also depends on how you define stress...what, oxidative stress???

Any doc or family member who gets Lyme...gets IV treatment...just ask!!

There are two camps on Lyme...and then my lonely outpost in the middle....on the DMZ. There is the camp that basically says 'There is NO Lyme'...(and this camp is winning the war on this issue) and then the camp that says every ache and pain is Lyme (without offending any one--likely I will---I do not see the purpose of lifelong ongoing IV meds....I think the germ is likely beaten to death and what remains is some autoimmune process that has yet to be defined. I guess I would look at what happened to the folks who had the vaccine, and surmise that.)

I will not give my pets the vaccine....I just test them. My vets take Lyme more seriously than any doc I have ever seen. One of them truly thinks I am suffering due to the Lyme.

I think a lot of people have gotten Lyme over the years, gone undiagnosed and now have sequela....not unlike polio. Can the human immune system survive Lyme? Probably, other animals do. Can it cause a lot of pain?....you betcha. You can quote me on that.

I had a well defined, diagnosed case of Lyme while living in an endemic area, was treated with antibiotics and I have some kind of widespread neuropathy AND myopathy....they may be totally unrelated....then again, like I said...who knows. I am stuck with the 'who knows'.

Unfortunately with true science...it moves really slow...by the time they found anthrax in that post office, people were dead. When the secretary of DHSS said that poor man who died from it got it from a bubbling brook, I almost choked!!

Back in 1986 I was on the TV news regarding the blood supply and HIV....no one wanted to listen...now look. BTW, I mean no disrespect to any one with HIV...or any lifestyle...I looked at it as an organism that spread by bodily fluid contact....just like any other organism that spread by that mode of contact. Like a scientist should look at it. Instead we had PR people involved in that fiasco.

I will not donate my blood, and if some one wants my organs (I am a donor)....they will know I carry a diagnosis of Lyme...they can make up their own mind if it is worth the risk of taking my organs. (If I were them I would take it)

I have been told not to donate my blood due to having had Lyme...OK...so what is with that??? If it isn't contagious anymore....why is my blood 'no good'. Go figure. That said, I am not going to pour in neurotoxic antibiotics, grow resistant strains of germs that could harm others or myself, in some hope that my neuropathy will go away or at least stop.....I would RATHER pretend I was healthy (if only it were so easy-I tried it, it isn't.)


There is NO rhyme or reason regarding Lyme.

I think our public health system is lax....it is not proactive...but it has some huge industries that DO the research and pay our bills....enough said.

All I know is that if I ever win the lottery, or of someone leaves me a heap of money, I am on the next plane to France.

I bet no one has continuous cases of neuropathy in France.

THEY DO STUFF FOR YOU IN FRANCE.

They don't make you just wait and use the "we'll see approach", or the "it's in your head, it's stress" approach.

AAAGGGHH!!!!

mel