kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Do you all ever feel like you have stepped into a sci-fi movie?
I have several people in my life that are really good friends that are dealing with lyme and co. I didn't meet them because of lyme. They were already in my life before this terrible disease.
When I found out that my daughter's illness for most of her life was actually LD and not all the other things that the ducks told me it was, I started looking around at all the other children that had weird things going on.
Turns out right now I have two good friends that most of their family is affected by LD. And now today talking to another really close friend, he has a LOT of symptoms and he gets a lot of tick bites every year.
Add to that, my husband has been having weird pains that make no sense and he got a tick bite a month or so ago. He did do a two week course of doxy, and he got it into his system immediately after the bite.
Is it possible that I see LD for everything now?? I'm starting to feel like something is wrong with me.
I don't want to be the crazy lady who thinks that everyone has LD, but I really do think it's that big of a problem.
If their were this many people just in my circle of friends that developed cancer, I do believe that heads would be turning. Why doesn't a tick borne illness do the same?
It's like people have their heads stuck in the clouds and noone wants to see what is right in front of them.
Please tell me I'm not the only one who feels this way!!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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when people find out i have lyme, they say "are you sure its not fibromyalgia or chronic fatigue syndrome?"
everyone seems to think it's SO rare, and it really isn't!
i believe that A LOT of fibromyalgia and CFS people actually have lyme...
it's impossible to get them to listen though :/
Posts: 442 | From usa | Registered: Oct 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
When many people think about Lyme, they think of acute lyme where someone takes abx and they get better right away with no lingering effects.
Maybe that person develops arthritis, bells palsy, or parkinsons after the lyme diagnosis... but most people believe that is totally unrelated.
The CDC and IDSA are doing a bang up job at spreading propaganda and lies with their fliers, websites and news releases filled with lies about Lyme disease.
When you do a search on lyme... the government websites come up on the first few pages. You really have to dig to get to the truth.
I definitely look back at some of the people I have known over the years and I KNOW they had lyme. Some that I still am close to, I have helped to get tested and get in to see an LLMD... others have drifted away and are beyond my reach.
It is sad that 99% of the medical community is sweeping this under the rug -- or they actually believe the CDC and IDSA lies.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
I am feeling this way too and I haven't even gotten to a LLMD yet. DX'd with ME/CFIDS and fibro for years, but thinking it may all be Lyme. At this point I am willing to try anything if it might work, I have people that need me to care for them. My hubby and kids (they all have signs of Lyme), my 65 year old Dad just DX'd with Alzheimer's (is it really or is it Lyme?), my brother is terminal and my Mom has some personality issues or are they due to Lyme. It's enough to make you scream!!!!
And I feel like if I do have Lyme I am just hopping from 2 "crazy making", unbelieved illnesses to another...
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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posted
I have said MANY times that I feel like I am in the "Twilight Zone." So many situations, so many things I read, so many people I talk to, and it can all be so surreal, sometimes.
I was told the other night, by my mother, that I "think that everyone has Lyme disease," when expressing concerns about my son. As far as I know, my son is the only person who I ever told her I suspect has Lyme.
I did convince a close online friend who suffered from CFS and Fibro for MANY years to get tested for Lyme, and sure enough, but that is the only other person I can think of.
I felt like I was in the twilight zone when PBS started canceling viewings of UOS, due to pressure from IDSA, and I feel like I am in the twilight zone when I hear the many uneducated statements that come out of people's mouths, so thank goodness that we have one another and places where we can go where others DO understand.
That helps more than anything else.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Instead of the crazy cat lady, I feel like the crazy lyme lady....
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Me, too. Sooooooo many people in my life with undiagnosed Lyme. I feel like I live in The Matrix.
I hope I live to see the day when the IDSA is finally exposed as the ones that are responsible for all of this. Then maybe all of this living hell will be worth it!
Beagle
Posts: 348 | From MA | Registered: Dec 2010
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
Beagle i hope you do too..
I have worked in the worlds largest walled prison, and have seen every kind of illness and every kind of human drama - people who have done every kind of crime, all walks of life.. 1000's of inmates... worked in the hole for many years... and NEVER have i witnessed to such a disease.. some of the most promising people in our world have been through this HELL. And what's worse about it, is... I can hardly believe this myself as I live it how will i ever convince anyone this is tearing me apart from the inside out, my loved ones and long time friends think I have flown over the cook koos nest.. well, when i do fly they are all gonna know it... I will go out in a flame of glory. go ahead be alittle crazy, they think we are anyhows, might as well have a little fun on the way.... BOOOOO
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
i will probably regret saying that...
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
What I don't understand is why it's so "crazy" or "controversial" to think that a bacteria or a biofilm of microorganisms can cause a chronic illness. What's even stranger to me is the idea that certain medical professionals think they "know everything" there is to know about borrelia. Several hundred years ago we didn't even realize bacteria existed! 30 some years ago we didn't know borrelia existed! And now we're pretending that we've done all the studying and come to all the conclusions that exist relative to such a new discovery?
I am seeing Lyme EVERYWHERE, too. I think it's also a huge (misunderstood) problem.
Why do we treat people for life for conditions that are dubbed "cause and cure unknown" (MS, fibro, CFIDS, ALS, etc) but we won't treat people for a condition that HAS a known cause and a known treatment (however ineffective it might be in certain cases)? The only possible motivator that can cause this type of widespread GROSS NEGLIGENCE AND INCOMPETENCE is profit. Any time you put a profit motive behind something it becomes MORE expensive and less effective for the consumer.
When we're dealing with corporations we have to remember that they are always concerned with their own bottom line, first and foremost. They are NOT concerned about our health unless it coincides somehow with their bottom line, and it rarely does. A drug company is not your savior, it is a profit-seeking entity that will gladly let you suffer and die if that means shareholders get a bigger slice of the pie.
Same with doctors. They see $$$ in TREATING chronic diseases, not curing them.
I've never in my life been more convinced that our health care system is worthless and in need of reform. It doesn't work for the patients, it only works for the greedy arseholes at the top who are siphoning off billions of dollars and billions of hours of lost productivity from our economy by denying effective and affordable treatment.
Disease is CAUSED by something. "We don't know what causes it" is a blatant lie. They know, they just don't want US to know or we'd be ****ed off and healthy enough to fight them!
Posts: 156 | From Virginia | Registered: May 2011
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go ahead be alittle crazy, they think we are anyhows, might as well have a little fun on the way.... BOOOOO
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