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fm5 05-25-2006 08:05 AM

What is Going on Here?
A Very Serious Question about Lyme Disease

I live in New Jersey where there is a high prevelance of lyme disease. I literally know about 15 people who have been diagnosed with it. Both of my sisters dogs have had it as well. And these are just those people/animals who have been properly diagnosed. I am sure there are many others out there who have lyme and have not been diagnosed.

I have seen all kinds of devastation from this debilitating disorder. Some examples:

A guy who I used to work with had to leave his former position because his memory was failing badly (lyme had attacked him neurologically). For example, he mentioned a story where he had gone out one night after work to find his car and couldn't even remember what it looked like. Mind you, this guy is only in his late 40's early 50's.

I know two friends of mine who were diagnosed with lyme and are suffering severe o.c.d. (obsessive compulsive disorder) to the point where they are both on disability. Lyme has been known to cause o.c.d.

My sister couldn't figure out what was wrong with her dog when it would automatically stop walking in the middle o the street and had to lay down. (She thought it was because the dog's paws were cold.) One day, the dog couldn't even get up to walk at all. Mind you, this dog was only 2 years old. She brought him to the vets. You guessed it: lyme disease.

My question is the following: I seriously feel that for me (an average citizen) to have known at least 15 people around me who have lyme disease and who have sufferred horrendously because of it - is far to many. And again, these are people who have been diagnosed. I am sure many more have it and don't know. [U]My opinion is, is that this is an epidemic[/U]. Why hasn't there been an outcry to state and federal health agencies and social service agencies to do more about this horrendous disease? And I mean, there should be free testing available at different sites in many hard hit communites, and education available as to all aspects of this disorder, and, last but not least, there should be extensive research done on how to safely exterminate these things from the environment.

jillybean81 05-25-2006 08:21 AM

Re: What is Going on Here?
To tell you the truth I am not at all surprised! IT IS an epidemic! I went almost two years suffering with my symptoms, which got VERY bad before I told my doc about a bulls eye rash that I felt was misdiagnosed as ringworm, mind you I was running a 102 fever! It is out of control and the majority of doctors have almost NO knowledge of how dehabilitating this disease can be!

If it weren't for my good friend, Laurie, whose son suffered for years, I would have been completely lost and miserable. Lymes is a disease with symptoms all across the board, I was misdiagnosed atleast 5 times with everything from reflux to thyroid disease (I am only 24). I would not wish Lymes on my worst enemy.

Another good question to consider is why-with Lymes in epidemic porportions can we not get a positive reading in blood work if that tiny small window has passed?! Why can't a new test be developed, why should I have to pay $900 out of my pocket to find out what is wrong?!

Sorry, last thing-you know how much it pisses me off that every time I wash my dog I am protecting her against Lymes & she even has a fancy little collar that keeps the ticks away too!!! Where was my shampoo two years ago OR my fancy collar that could have saved me from years of suffering!!!! The likelihood of that deer tick hopping on my vaccinated and protected dog, not getting the good bite it wanted, it turned around and hopped and me to make me endure one of the most difficult times of my life.

deejavu 05-25-2006 08:53 AM

Re: What is Going on Here?
Hi fm5,

Your question is an excellent one and has been discussed several times on this board already.

Yes, Lyme Disease is an epidemic and continues to grow, not only in every single state in the U.S. but also in International Countries. Funny, I had an old friend call me yesterday and he told me that the country of Turkey is realizing that Lyme is also an epidemic there as well as the U.K., not to mention many other countries. It is everywhere and it is not only transmitted by Ticks, but also by mosquito's, fleas, mites, black flies, any bug or vector that has guts.

Lyme is also called the "great imitator" because the symptoms mimic MS, CFS, ALS, Lupus, and many more diseases. It is also a neurological disease as it does affect the brain.

In my opinion, the reason we don't hear alot about Lyme is because of many factors which I call the domino effect:

It all starts with the CDC (Center of Disease Control) that has outdated guidelines in which the majority of doctors follow, thus misdiagnosing most people. If the CDC would change their guidelines, then doctors would have to start learning about Lyme Disease.

Another problem is Insurance Companies as once again, because the CDC's guidelines are so old and so wrong, insurance doesn't pay for "accurate" testing and "proper" treatment by a "reputable" doctor who understands Lyme Disease to it's full extent.

Then we have our politicians who I am constantly in touch with because they have the power to change the CDC's outdated guidelines. Right now there are 2 Lyme Bills sitting in Congress that if passed, would enable more research to be done and help change our current situation.

The sad part is too many Lyme-infected people are too sick to contact their elected officials to demand that they vote yes on these bills.

There has been some awareness taking place recently: the state of California has officially declared the month of May "Lyme Awareness Month" and I hear that advocates are fighting for other states to follow.

As far as testing, that gets a little bit more complicated as most doctors use the ELISA test which is the least reliable test and the most inaccurate.

Sadly, we only have 1 or 2 "reputable" laboratories that do the most accurate testing in the U.S.

All I can say is to keep writing our politicians because that's the only way things are going to change. And we need change and we need it now.

If you have any more questions, please ask.

In my opinion, I compare Lyme Disease to the AIDS Virus as when that first started, people had no clue about the AIDS Virus and it took a long time for AIDS to get recognized. I believe that Lyme will be big news soon as we have many people fighting to make everyone aware of it.

I hope that helps,

battling on 05-25-2006 07:00 PM

Re: What is Going on Here?
HIgh FM5
Im in the Uk and i belive you should be able to walk off the streets and have a full blood screening.

When i became ill and wanted to cross out other infections i went to the STD! clinic here in teh UK for syphillis and aids testing. i went and i qued 3 times! and i never got seen.

Its a joke no one relay cares unless tehy are suffering them selves or caring, so yes suffering also.

Its so important taht support is on teh net as teh authorities are blinkered, but soon they will ahve to do something.

Unless the Queen gets it though i dought it will be soon

Smyle 05-25-2006 07:21 PM

Re: What is Going on Here?
Hi Fm5

Pretty sad and scary isn't it? Most people myself included- until I got lyme have no idea how prevalent and when you have it how devastating this disease is. I believe that many, many people are infected with Lyme and don't know it yet. I started having symptoms that were very vague four years before I became disabled with this disease. All of us here speak up on these boards to try and help educate people.


Pearlscale 05-25-2006 08:09 PM

Re: What is Going on Here?
Even though I tested positive 19 yrs ago and was treated, I still have it. I knew about it as far as what was understood 19 yrs ago. I believed the doctors when they said I had been treated and it was gone. I had fibromyalgia end of story. I wonder how many others out there had it like I did and thought it was gone and are living with the now chronic stage and don't even realize it. Sad thought. But like it was said, we have to spread the word. Maybe we can all start wearing a lyme green ribbon. That could at least help to remind us and others would question what it is for????? Just a thought.


fm5 05-26-2006 08:30 AM

Re: What is Going on Here?
Thanks for your responses guys!

I think that for me personally, to know at least [U]15 people [/U] diagnosed with it (as well as 2 dogs) - this is really a problem! Again, I view this as an [U]epidemic[/U], particularly in the state of New Jersey. And from what I have seen, the outcomes of some of the people that I know who have had it, is devastating - again, several friends on total disability from it - with it affecting their minds!!!!!!!!!!!!!!

I think it is time for the CDC and various health organizations to treat lyme disease, particularly here in New Jersey as an epidemic and stop brushing it off as if lyme disease were just "minor".

deejavu 05-26-2006 08:42 AM

Re: What is Going on Here?
Hi fm5 again,

The CDC and health organizations do not treat Lyme Disease, only "reputable" doctors do. Once again, Lyme is an epidemic in every state, not just New Jersey and it is not limited to the U.S. alone, but it is in every country.

I think you would understand this disease better by reading the book called "Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders" (2nd Edition) by Karen Vanderhoof-Forschner.

You may also want to read Dr. Brian Fallon's findings about how Lyme affects the mind, very interesting.

Do you suspect that you may have Lyme or are you concerned about a close one that is not doing well?

It's nice that you are concerned, but in order to help others, one must understand this complex disease to it's full extent as it is a multi-faceted disease.


fm5 05-26-2006 09:52 AM

Re: What is Going on Here?
[QUOTE=deejavu]Hi fm5 again,

Do you suspect that you may have Lyme or are you concerned about a close one that is not doing well?


My point in writing the thread was that I just have found it odd that I know at least 15 people with this (and these are the ones diagnosed with it), and I feel that the CDC and state and local health organizations should be doing more - and I mean, free testing, screenings, providing health information to more people, etc.

I just get this feeling that health officials tend to concentrate on certain diseases and their prevention - AIDS, lead poisoning, health effects from tobacco, etc. - where we hear unending commercials about, setups for free screening, etc., and I just get the feeling that they have poo pooed lyme disease. I just feel that more can be done. Also, this disease is costing taxpayers enormous amounts of money. I, alone know of a couple of people on disability because of it.

deejavu 05-26-2006 12:27 PM

Re: What is Going on Here?
Hi fm5,

I think it's wonderful that you are concerned, we need more people like you in the Lyme community.

I know I mentioned the 2 Lyme Bills, and I will go into more detail as you could make a difference by contacting your New Jersey elected officials with your concerns.

The 2 bills in Congress are: Senate bill S.1479 and House bill H.R. 3427

These bills (if passed) are called “Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005,” which would authorize an additional $100 million for Lyme disease research, education and prevention over five years and provides goals which address the issues surrounding Lyme disease.

Let us know if you write or call your elected officials, okay? Every single person makes a difference.

Denise :)

fm5 05-26-2006 12:37 PM

Re: What is Going on Here?
Thanks for the information. I will contact them.

dealer1111 05-26-2006 03:46 PM

Re: What is Going on Here?
I am from PA I know of over 40 people with Lyme...

dianneom 05-26-2006 04:28 PM

Re: What is Going on Here?
Hi fm5,

My dog and I became ill around the same time (1999) . The dog was treated and recovered. It took 2 years for my diagnosis and I'm still sick.

Because of my Lyme, I had to stop puppy raising for the guide dog school in Morristown.

6Blues 05-26-2006 05:49 PM

Re: What is Going on Here?
Hi fm5 and greeting from the Jersey Shore.

I knew of Lyme prior to getting sick but I was sadly misinformed. I knew of the bulls-eye rash and that a few days of medicine would take care of it.

Boy was I wrong.

I have no deer where I live. Then I learned that ticks can live on squirrells, pigeons, moles, rabbits, birds, etc.

I have no "woods" where I live. Then I found a tick that dropped out of a tree and landed on my shoulder while I was mowing the lawn.

I had unexplained knee pain for a few weeks but I dismissed it.

I had a red oval, very very itchy rash on my right shin (not the left) that would not go away or respond to any creams. I dismissed that also.

Only now am I aware of how serious this disease is.

I also can't believe how many people I talk to, who say "Oh boy! I know so-and-so who had Lyme and they were sick for 2 years." or something like that.

Then to have 9 or 10 doctors not even think of Lyme as a cause for my illness? argh!

I am glad to see you pop in here and say hello and voice your concerns. Peace and health to you. :)


Denise: Thanks for sharing about the bills before legislature.

jojo 05-26-2006 06:02 PM

Re: What is Going on Here?
I don't want to get anyone excited at me...but I have wondered...There are things like alcohol, cigarettes, drugs...that are MONEY MAKERS for the government, state, doctors, rehabs, marriage councelors, mortuaries ect. ect...
I wonder how many diseases there are cures for that are MONEY MAKERS... :eek: Well I think alot of us know what it is like to be pushed around, shoved on and run into the ground when all that had to be given to us were antibiotics...but oh noooooooo what would the antibiotic do to my system... :rolleyes: Now what was that OATH the doctors are suppose to take :confused:
There's alot going on and when you have to deal with the doctors, State, ect. oh man I can only imagine what isn't being told to us....scary world or should I say...SCARY SYSTEMS!


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