I have been encouraged to tell my Lyme story. Initially, I responded "I really don't like to talk about it".
But then I realized that it was important for you to understand why there is this emphasis on Lyme Disease and why we are having an expert come to speak. So... it makes me uncomfortable and nervous to do it, but here I am. I put on my strongest anti-perspirant and, if I don't pass out talking about it, I hope you will have learned something valuable by the time I am done. I will try to spare you the boring details - that laundry list of symptoms that make people's eyes glaze over...
I became severely ill with Lyme and all of its co-infections in about 1996. But it turns out that I had had it for about 15 or so years before I ever knew I had it.
Before the acute onset, there were many years of subclinical symptoms that doctors and I ignored or wrote off as being normal aches and pains of every day life.
When the acute symptoms hit, it was like a Tsunami came to my body - with each passing moment leaving me more and more disabled. In a very short time I was completely debilitated by:
Severe vertigo to the point of not being able to walk straight; I could not close my eyes without the room spinning. I slept with my feet on the floor for 2 years like a drunk person. I had 2 ruptured eardrums, seizures, hallucinations and coma-like episodes. I started to go paralyzed and was in severe pain in many parts of my body - pain that came and went.
My doctors tossed me around for 6 months with many diagnoses such as multiple sclerosis, chronic fatigue syndrome, fibromyalgia, and then ``tropical disease of unknown origin without a cure''. They loved to blame it on my travels.
They never diagnosed me. A friend suggested it might be Lyme. This prompted me to go on a rampage of Lyme research. This was before the internet days - so it wasn't so easy back then. I wobbled from library to library finding everything I could..
But, as most lyme patients experience, when my doctors were presented with my research, they said it was an impossibility.
They had read the Merck manual! How could I, who grew up in New England, summering on the vineyard, with a vague recollection of childhood ticks, ever contract such a rare disease... and besides, the antibiotics that I had been on for the ear infections certainly would have cured me. Everyone knows that!
And of course, there was no bull's eye rash.
They rolled their eyes, shook their heads, and assured me that I did not have lyme... ``That's impossible!'' - one infectious disease specialist said, "the test came back negative!"
Again they trotted out the same tired out list of catch-all diagnoses of unknown origin, and I knew at that time that I needed to find a specialist.
I have been under treatment ever since. I was able to get off of antibiotics for 2 years at one point but then I relapsed to the point of being back at square one. My Lyme specialists have saved my life. And so did the friend who suggested that I might have it.
I never had a positive lyme test until 2 years ago.
Most people I know who have it do not test positive for Lyme. This is because, oftentimes, in the sickest patients, their bodies are not making antibodies to the bacteria anymore.
The Lyme bacteria is very clever and has many cloaking mechanisms to evade the body's immune response. It is similar to the Syphilis spirochete, yet syphilis is called "Lyme's dumb cousin". It is the lucky ones get a positive test. Some, like myself, will test positive many years after they have been under treatment.
Most people I know with Lyme were never diagnosed by their doctor, but by a friend or a random occurrence that made them aware.
Most of them, like myself, catch it long after it is possible to make a full recovery. Many never catch it at all, and still, many others die from its complications, with and without diagnoses.
This is why we are bringing a Lyme specialist in from New York City. People fly from around the world to see this man. People everywhere are unable to get diagnosis or treatment for this disease. They are written off as having MS, Lupus, Parkinson's, Chronic Fatigue, fibromyalgia, Alzheimer's' disease, psychological disorder - and the list goes on. I refer to these as "catch-all diagnoses" because, while they do have a name, there is no indication as to what causes these diseases!
There comes a point when patients need to be proactive in their care and health, and the time is now.
[ 22. April 2008, 05:18 PM: Message edited by: luvdogs ]
Posts: 588 | From Rhode Island | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You are wonderful! And a very brave soul for doing this.
And it was perfect! It caught MY attention.. and I see "Lyme stuff" every day.
Good for you!!!
Lettuce no how the program goes! And thanks for educating others... here, there and everywhere.
Question to the LDA and all of you: for all of us who are motivated to tell the story, is there a PowerPoint presentation we can use to present and edit? There is so much to share and tell, so a succinct, distilled templated presentation would help us get the personal & compelling story out to the masses with a cohesive message. It all starts with an organized plan!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good question Cold Feet.
I have made my own programs up over the years... old slides .. not power points. Depending on the audience and main topic.. I could adjust them as needed.
Doctors make their own too as the need arises and to fit their audience.
I don't know of a "standard" one that is available. Sorry. Maybe someone else does?
posted
I am not sure either - youtube us all together?
Thanks for the feedback guys. I am glad that I did it but it sucked to have to. But it seems like it got the point across.
It is hard revisiting that. It makes me shake when I tell the story - never mind in front of a large group of people that know pretty well but they don't know this side of me.
Posts: 588 | From Rhode Island | Registered: Jun 2006
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bettyg
Unregistered
posted
another suggestion would be showing some of the YOU TUBE COLLECTION ON LYME VIDEOS; go to my post at top of medical; click on there and study links to find the best that would work for you!
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posted
Wow that was great! So sorry I had to miss it. So Dr. R wasn't at this presentation? Was there a change in plans?
Posts: 237 | From Rhode Island | Registered: Jan 2008
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I think I will have my sis video it and put on youtube. Would that help
She is a videographer How handy is that?
Oh, and she has lyme too, so she'll be there anyway.
Posts: 588 | From Rhode Island | Registered: Jun 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Luv -- this is wonderful.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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bettyg
Unregistered
posted
luv, after your dear sis gets this on you tube, please copy the link to MEDICAL to my VIDEO COLLECTION with length of time and summary of it! big thanks!!
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I am reading through this thread again and shaking my head -- at me!
Lyme is such a nasty disease. It's a bit of a paradox, in that it is an evil, terrible affliction. For those that have it, they know this. But everyone describes it differently; recounting their own personal hell.
Maybe trying a templated approach is crass?! Even though many messages from patients are the same?? (I am glad "under our skin" is coming out. I think we may all learn about other ways to tell the story.)
In the meantime, I think we need to follow in Luv's footsteps. Somehow, some way. Personal advocacy works!
Lives are shattered because of this terrible disease; so when personal stories are told, it's hard to deny the reality of this epidemic!
Luv, thanks for sharing and setting a good example. It's time for me to get off my azz !
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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you touched my heart, and i enjoyed your humor in it too. you made it interesting without going into ALL SYMPTOMS we have.![[lol]](graemlins/lol.gif)
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How handy is that? 
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