Topic: I think there's a major roadblock in advocacy that we can easily fix
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Please, when telling people about this disease pleeeeease let people know you have chronic lyme, not lyme. They are 2 separate diseases. Not even closely related. Except one triggered the other.
Lyme is easily fixable and feels like the flu for a few weeks.
Chronic lyme is probably the most complex and one of the most horrible diseases on the planet.
I like Dr. H's idea of MSIDS but it's not catching on.
I see billboards this month and a ton of advocacy that say "lyme kills", that may be true but very rarely.
"Chronic lyme kills and ruins lives" I think would be better.
It's almost like saying someone has skin cancer when it's benign and can be removed in a drs office or someone got skin cancer that then spread to their lungs, liver, stomach, and pancreas... BIG DIFFERENCE.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I see where you're going with this. The word Lyme just doesn't have the same clout as cancer and I believe that's the issue.
I've said I have Lyme and anyone with Lyme experience has taken it seriously.
It's the uneducated that don't know what to make of Lyme (whether you say Lyme or chronic Lyme). No one really tries to learn about Lyme until it touches their lives (or there's a scare tactic).
"Lyme is easily fixable and feels like the flu for a few weeks."
Hmmmmm. I don't think I want to spread that idea around either.
I started treating first time around when I had a bulls-eye rash and had to treat for 6 months.
I was only going to treat for 3 weeks and then a friend stepped in who knew someone with Lyme who said it wasn't enough.
Lyme does kill. My neighbor's friend died of heart problems from Lyme within 2 years of infection.
That sounds like a good billboard if there's a website connected AWAY from the CDC on it that explains the controversy.
We don't have enough statistic to say how many times heart attacks and heart failure has to do with Lyme.
Death from Lyme might be rare or more common than we know at this point.
Posts: 2839 | From California | Registered: Jul 2012
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posted
My LLMD always refers to Lyme as Borreliosis ... and Chronic Lyme as Chronic Borreliosis.
MSIDS makes people think of SIDS.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
That's true Judie. I was saying that from the idea that you get the bullseye, and go straight to a dr who gives you antibiotics. Generally the CDC is right, most get better if treated immediately. Even though I know a lot of people run into problems down the road.
I've seen a lot of people who know about lyme, and even have had it. But they associate it with a quick illness.
I just think they're needs to be a distinction made.
That's a good idea Too.
The "cure lyme" signs at these rallies just seem to do more harm than good.
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I totally see what you mean. It certainly doesn't emphasize the long, drawn out, insanity of this illness.
You could very well swap out the word Lyme and say UV rays effect children, adults and pets.
I agree, there has to be a better way. We need more influential people to come forward and be honest about what severe cases of chronic Lyme do to people.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Unfortunately, most people do not realize what a complex illness LD is, and then you add other Tick-Borne diseases and it can become a nightmare.
I haven't had time to post in a long time, but want to share some background information and what I've been reading recently.
In South Carolina, doctors are told LD isn't a problem, so few of them even consider LD as a possible diagnosis. Dr. Kerry Clark (Univ. of No. Florida) has found otherwise. He has even found strains of the bacteria unique to the South. This could explain why so many with tick bites and Lyme symptoms are told they don't have it. For Radio Interviews and articles, go to www.flda.org
Twenty-five years ago, I asked a doctor about Lyme. He said "We don't waste our time studying an illness that we'll see only one bizarre case in a lifetime." I guess I was his one case and he didn't realize it. I also have Bartonella and Babesiosis.
After dealing with this over 30 years, my opinion is that many are dying of LD (especially in the South), but it's misdiagnosed as Alzheimer's, heart disease, Parkinson's, ALS, etc., etc.
My father was misdiagnosed with Alzheimer's, but a LLMD in NJ said it was Neuro Borreliosis. Diagnosis and treatment came too late and he died. Same with his sister. A prominent attorney here was diagnosed with ALS. At the family's insistence, he had a LD test, which was positive. His doctor said they weren't going to worry about the LD, just the ALS and of course he died. Our state ranks near the top in deaths from heart disease. I believe many of them probably have TBDs.
I agree the CDC is right when they say most get better when treated immediately, BUT..... there is no follow up and no one knows how many have had Lyme flare up later and it's not recognized as LD. The same happens with other "under-treated" infections, Ex: sinus infection comes back, but it is treated again, not misdiagnosed.
Personally, I hate to appear cynical, but I don't rely on the CDC for reliable information on Lyme or any other Tick-Borne Disease. I just hope I live long enough to see TBDs recognized for the serious health hazard they are and proper treatment is available.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Yes I agree.
Lyme disease and chronic lyme disease are two very different things.
I think chronic should even be called for what the patient has.
cardiac lyme disease
neurological lyme disease.
Personally, I hate the word chronic. reminds me how low the cure rate/remission rate is.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Is chronic Lyme even treatable? I wonder is we should look to the syphilis terminology and call it tertiary?
Chronic seems like something you need to live with... Not something that can be cured... Perhaps that true... But I remember my frustration with chronic hives! Just have to live with it..
I'm feeling very discouraged lately.
Posts: 1728 | From USA | Registered: May 2011
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Exactly.
We have to call it something else. People don't care about someone with "lyme"
It's chronic and Dr. H said he NEVER once saw a patient with only lyme in 12,000 cases. Always had bart, babesia, etc...I have at least 11 co infections. It's very minimalistic to say I have lyme.
It's chronic, it's multiple infections, it's autoimmune, it triggers many deadly illnesses.....it's not a bullseye rash that immediately gets treated with antibiotics. That would be "lyme"
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Sadly, NO ONE seems to know or care about it until they are so sick with it that they are basically non-functional (other than LLMD"S, who mostly have been through it themselves).
Even people I know who have all kinds of symptmos and other diagnoses, that I know are TBD's don't want to know about it. It seems like such a losing battle, no matter what you call it.
I agree with you about calling it Lyme, but Chronic Lyme doesn't help either. MacDonald says we should only call it Borreliosis, or NeuroBorreliosis, as the case may be.
But regardless of what you call it, it goes back to what I said above in my experience. No one wants to know about it until they are brought to their knees! And even then, they often don't want to know! Go figure.
Many people would rather die than change their lives or make an effort. Sad but true.
Posts: 3792 | From around | Registered: Mar 2008
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posted
We have to come up w/a better name for sure.
To me, it has been a PLAGUE ON MY LIFE.
They worked it well for AIDS so everyone knew that it meant. I'm no expert, but it seems someone who knows how to come up with initials that have PR impact.
I only wish all the famous people with LSL (late stage lyme I call it) to do what the liberal media, Hollywood (ding ding) and other notable people did for that cause. EVERYONE KNEW WHAT AIDS WAS, EVEN IF THEY DIDN'T HAVE GAY FAMILY OR FRIENDS!
I am at least grateful that they are running the ad campaign shown.....at least they are trying........
Posts: 19 | From PA | Registered: May 2014
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posted
Sorry, hit send b/f I was done in earlier post.
Lyme Brain, who doesn't love it? (ME)
Since I got sick, I have stressed to my family and friends the importance of treatment if bitten by a tick.
I was thrilled when my grand-niece, was diagnosed early by a pediatrician as it being lyme. I felt like I saved a life and it was maybe the only thing I had done lately that mattered.
Thrilled she got treated at 8 years old. Then, a few months later, my brother called and said, "So, xx got treated and she's all better". So happy........until he said, "SO THEY TREATED YOU AND YOU SHOULD BE OVER IT BY NOW TOO".
What? He knew I've had it for years and years....with pills/IV's and rest of what we do. So basically, the early CURE meant I wasn't that sick...or just blaming it for my downfall.
Wow......double edged sward for all the advocacy done. We save them and we are forgotten, those who WEREN'T TREATED AND WERE MISDIAGNOSED FOR YEARS UPON YEARS.
Sad day....but I did save that little girl f/this nightmare so I'll take that as my golden ticket into heaven. As if all of us don't deserve one, right? Posts: 19 | From PA | Registered: May 2014
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I truly believe it is purposely being misrepresented by officials and also us... If they admitted how many people suffered, with no real cure how would they deal with that? I believe "they" have known all along how insidious this is. Omg! No one can avoid biting bugs! Even myself... I don't want to believe I have it... Who wants to label themselves with a disease that can't be cured? That the treatment makes you a pariah to all those who are scared that abx are going to become obsolete? That has no true protocol? In a way it's easier to say I have fibro, or CF or even lupus. Aids was visible, it brought people down fast! Many of us are highly functioning a lot of time... No one is afraid of catching it from us...
But I think the simplicity of "Lyme" and "treat the bite" has helped many. Sadly it does confuse people about us with late stage Lyme.
Sigh...
Late stage disseminated tbd
How bout LSD TBD for letters?
Posts: 1728 | From USA | Registered: May 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
IMO, treating a bite/rash (if you're lucky enough to know you even have one) and/or treating sx right away is prudent but will not necessarily result in a "cure" or remission.
DD was treated very aggressively within 3 weeks of onset of symptoms. Despite that, she has Chronic Lyme.
Posts: 1885 | From here | Registered: Jul 2012
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Late stage Lyme" has a good ring to it or "advanced Lyme." It's like saying late stage cancer.
I sometimes say I have "tick borne infections" and then people look really confused. I then go on to say I have 14 infections and am in heavy medical treatment.
That seems to get a little more sympathy, but not much.
Posts: 2839 | From California | Registered: Jul 2012
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Late stage Lyme" is a term that has been used by the IDiots for a LONG time (also in their guidelines), and they claim it can be easily treated with antibiotics.
Years ago at a protest I spoke to several advocates and we agreed "chronic Lyme" should be the term, OUR term, for what is happening, and we've used it ever since in all writings and talks whenever possible.
Of course the IDSA still insists there is no such thing as "Chronic Lyme", make a big deal about it, and it really ruffles their feathers when we use that term, big time! I think sometimes their heads will explode they get so angry about it.
And that is one reason I keep using it.
Hey cbb, nice to see you! Interesting info you posted too, as usual!
It's nice to know that someone remembers me after all this time. Thanks for the nice comment.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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