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I know I have shared with everyone about having Lyme disease.

I began subscribing to the online forums again when I was bitten again this year.

It is very hard for people that have not been through it to understand how people can look relatively healthy and be so damaged most of the time for life.

There are 100' of thousands of these stories out there some even more tragic.

 

I have permission from the author to post it here.

 

July 16, 1999 John F. Kennedy Jr. died. Turns out that was the worst day of my life as well. No, I didn't know him, nor did I crash in an airplane that day. Instead, I took my family of six on a house hunting trip in a wooded subdivision in Conyers, GA. Little did I know one of the worst enemies Georgia has ever known was waiting to ambush me and my family. Little did I know that fourteen long years later I would still be paying the price for that trip EVERY HOUR OF EVERY DAY.

 

What exactly was the price? My health, the health of every member of my family, a half million dollars to date, and a bankruptcy. Meningitis, encephalitis, optic neuritis, Hashimoto's Thyroiditis, and that's just the beginning. In case you don't know what those words mean, they mean unbearable pain, indescribable suffering, unimaginable sorrow, and unfathomable desperation. They mean an infant crying unconnsolably 24 hours a day seven days a week. They mean a teenager missing school, forgetting what has already been learned, incapable of reading, incapable of living, They mean a husband in constant pain dragging himself to work desperate to keep health insurance only to find out his insurance won't cover the fees for doctors who treat a disease that "doesn't exist." And, they mean a mother who connects herself to an IV every day for months while she crawls from her bed to lie in front of the stove until she can get up and cook for her sick family--a mother who has begged, pleaded, cried and prayed for relief. But no relief has come. None. None.

 

What enemy of the state of Georgia could inflict such devastation? I'll give you one hint. Look at the end of this sentence. The very end........the period. A tick no bigger than the size of a period destroyed my life. For fourteen years my family and I have traveled to Connecticut, New York, Washington DC, Pennsylvania, and New Jersey. Why? Because Lyme Disease "doesn't exist" in Georgia. Because, according to the CDC and the Infectious Disease Society of America, chonic Lyme doesn't exist. And, now we come to you, elected to represent the good people of Georgia. We have traveled because YOU have done nothing.

 

What do you need to do? You need to get educated through Georgia Lyme Disease Association. You need to let the CDC know that Georgia has Lyme. You need to investigate the research of Dr. Kerry Clark, North Florida College. And you need to tell our U.S. officials to fund Lyme Disease research. Do you know there isn't even one test available to accurately diagnose this disease. NOT EVEN A TEST!

 

Currently, Lyme patients are medically discriminated against and Lyme doctors are harrassed and persecuted. We need help NOW. Actually we needed it fourteen years ago. This is a nationwide problem. The reporting is flawed intentionally by the CDC.

 

I implore you to make this a priority now. Please help us NOW. We are dying. But make no mistake, if you refuse, we will not go away. We will come again and again until we are heard. We will be heard!

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CDC does recognize "chronic" Lyme. They just tend to refer to it by its technically correct name, Post-Treatment Lyme Disease Syndrome.

 

http://www.cdc.gov/lyme/postLDS/index.html

 

 

And the CDC does recognize confirmed cases of Lyme in the state of Georgia.

 

http://www.cdc.gov/lyme/resources/ReportedCasesofLymeDisease_2011.pdf

I will share that. The issue is doctors not knowing.

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CDC does recognize "chronic" Lyme. They just tend to refer to it by its technically correct name, Post-Treatment Lyme Disease Syndrome.

 

http://www.cdc.gov/lyme/postLDS/index.html

 

 

And the CDC does recognize confirmed cases of Lyme in the state of Georgia.

 

http://www.cdc.gov/lyme/resources/ReportedCasesofLymeDisease_2011.pdf

 

Their official stance on post Lyme is wrong there are many studies that show the bacteria goes into a cystic state and can be anywhere in the body. It systematically destroys these areas. Additional treatment early on can remove all the bacteria.

Lyme is an aggressive disease, if symptoms worsen after treatment has stopped no matter how long or aggressive it is still there and that is what they are denying.

Their numbers for Georgia are way off. We could be on the verge of an epidemic from what I am hearing about Carrol County and Douglas county.

 

The same thing happened in the north eastern states.

At some point the disability from the disease will start a campaign like it did in many Virginia counties just this year.

Using geography to diagnose this disease is bad science, plain and simple. The North eastern states have a good grip on it due to education of the public and medical community.

The disability cases come from people mis-diagnosed prior to the education campaign.

Also those that did not get long enough treatment.

It would take all day to explain the newer research that has come out this year.

My vet knows more about this disease than most GP's in Georgia. The first thing he ask was did I have a relapse, meaning that the bacteria begins to multiply from the cystic form and you relapse.

 

This is the issue, some get better with longer treatment some don't. If this were cancer patients would be given every opportunity to treat it every way they can right up to the end.

The victims of Lyme are not always given that opportunity. Their doctors are having their licenses revoked for trying any and everything to help these people.

You can not be declared disabled from this disease, you have to be diagnosed with rheumatoid arthritis fibromyalgia, MS, ect. What is difficult is the symptoms never quite fit these diagnosis so it is a long road.

People might be interested to know that Micheal J. Fox was treated for Lyme a few years before he came down with Parkinson's disease. He is one of my favorite actors. Who knows if he had been given a longer treatment if we would still be enjoying his wonderful acting.

The damage to the nervous system can be permanent.

 

The key is education and early diagnosis.

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From your initial post:

 

"...Because Lyme Disease "doesn't exist" in Georgia. Because, according to the CDC and the Infectious Disease Society of America, chonic Lyme doesn't exist..."

 

That is what I addressed. CDC absolutely does say that it exists here and with regard to chronic Lyme:

 

"...Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS).

 

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research, and clinical studies to determine the cause of PTLDS in humans are ongoing..."

 

 

So your initial post is misleading, at best. It's fine for the author to disagree with a lot of what the CDC is saying about the disease )they've been wrong about plenty before and there is still so much about Lyme that is unknown) but the author loses ground with false statements like those I responded to.

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From your initial post:

 

"...Because Lyme Disease "doesn't exist" in Georgia. Because, according to the CDC and the Infectious Disease Society of America, chonic Lyme doesn't exist..."

 

That is what I addressed. CDC absolutely does say that it exists here and with regard to chronic Lyme:

 

"...Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2–4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS).

 

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research, and clinical studies to determine the cause of PTLDS in humans are ongoing..."

 

 

So your initial post is misleading, at best. It's fine for the author to disagree with a lot of what the CDC is saying about the disease )they've been wrong about plenty before and there is still so much about Lyme that is unknown) but the author loses ground with false statements like those I responded to.

 

She may need to clarify that it was the stance when she was infected. But you are right she needs to modify that before she publishes.

I was told the same thing repeatedly that it was not here and they(the doctors) believed that all the cases in Georgia were contracted out of state.

The CDC numbers are no where near the number of cases polled Dr.'s are treating.

 

 

The danger in that is the state is not educating the public. So many of the test are negative. They also know the bacteria has evolved and the test does not pick it up.

 

 

Thanks for the input. :drinks:

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I'm sorry to hear that you have Lyme Disease. People (and yes, even Doctors) do not understand what we who have invisible illnesses go through. I have Fibromyalgia and recently tested positive then negative on my ANA screen. They are now testing to see if I may have Multiple Sclerosis. Fibromyalgia is a very debilitating condition, yet, just as with the Lyme Disease, it is considered "not real". I'm here to tell you that it is very, very real. The saying "walk a mile in my shoes" comes to mind. If you CAN walk a mile in my shoes, I promise, when you get back, you will understand just how incredibly REAL the condition is. I LOVE the outdoors. I'm an amateur photographer (hobbyist) who used to hike many times a week. Now, I can only go on the good days, and even then I have to decide if it's worth the many days that I will spend recovering on my back or butt afterwards. The spoon theory is a perfect example of how people with Chronic or Invisible illnesses feel. If you have never read it, here is the link:

 

http://www.butyoudon...e-spoon-theory/

Edited by PauldingPeach
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I'm sorry to hear that you have Lyme Disease. People (and yes, even Doctors) do not understand what we who have invisible illnesses go through. I have Fibromyalgia and recently tested positive then negative on my ANA screen. They are now testing to see if I may have Multiple Sclerosis. Fibromyalgia is a very debilitating condition, yet, just as with the Lyme Disease, it is considered "not real". I'm here to tell you that it is very, very real. The saying "walk a mile in my shoes" comes to mind. If you CAN walk a mile in my shoes, I promise, when you get back, you will understand just how incredibly REAL the condition is. I LOVE the outdoors. I'm an amateur photographer (hobbyist) who used to hike many times a week. Now, I can only go on the good days, and even then I have to decide if it's worth the many days that I will spend recovering on my back or butt afterwards. The spoon theory is a perfect example of how people with Chronic or Invisible illnesses feel. If you have never read it, here is the link:

 

http://www.butyoudon...e-spoon-theory/

 

 

I understand how you feel. I tried very hard to go on with my life after. Normal for me is non-stop-go-do until you drop.

Just like you stopping is not choice because depression is the number cause of death for people with these conditions. I push and I pay dearly.

My husband had to take my lawn machines away, gardening was my favorite thing and I loved doing the lawn.

What ever it did to my nervous system changed the way I experience pain.

If I over do it and get sore muscles, I am rolled up in a ball in the bed, it is unbearable agony.

 

Just a note, don't dismiss a tick born illness or parasite until you have explored every possibility, they are discovering new strains every year that don't show up on the current test.

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