posted
I know. I was dxd with FM in 1980... Lyme in 2000. Most of pain left. The rest left after going gluten free.
The pain I have now is from bulging discs in neck and back.. and then my poor feet!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Ya know, after seeing many commercials about "juvenile fibromyalgia" I finally this morning called the toll-free number.
I said to the woman who answered "where are you located?" Her response was that they had locations all over.
"All over where?" I asked? She had no response. I asked "where is your corporate headquarters? She said once again that they had locations all over.
I said to her "are you located in the northeast?" She said "yes." I said to her "did it ever dawn on you people that these young kids (they target 13-17 yos) need to be evaluated for Lyme Disease?"
She said "Oh that's something people have to discuss with their doctors." Told her I couldn't even express in words how sad this makes me and just how disgraceful it is.
DD heard the phone call and agreed with me. Years ago she'd have been mortified that I would make a phone call like that. Guess the family's finally getting used to me. About time!
Something is just SO WRONG with this.
A healthy kid who was playing sports/attending school every day/going out with friends now has headaches, joint pains, fatigue, GI issues and is essentially non-functional.
This must be FIBRO--a disorder with no known cause and no known cure. So let's load the kid up with drugs and see if that'll fix her.
Let's ignore that there might actually be an underlying CAUSE to these symptoms! But why follow simple logic when it's so much easier to just deny what might be actual truth? Oh, right, it all boils down to the moolah.
Did a quick google search. Here's something that popped up:
What a disgrace. And what a disservice to our young people.
Posts: 1885 | From here | Registered: Jul 2012
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
beaches,
I get so angry when I see those commercials too!
It's hard to believe that in 2013, Dr's and people in general cannot see that the cause of these problems are infections.
We just have to keep educating people.
I post as many things as I can that I think are beneficial, on facebook.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
and maybe they should also consider GLUTEN!!!?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Hi dekrator, Yes, those commercials make my blood boil. And honestly I just don't get the logic of noting the symptoms and automatically arriving at a Fibro dx.
This "Fibro" thing went out the window for me years ago. Now out of nowhere, there's "Juvenile Fibromyalgia" Good God.
Unfortunately, there are some parents who will buy into this crap and subject their young teen to this garbage. My heart goes out to these young people.
I don't do FB so I wouldn't be able to check anything through that venue.
I am glad I called the number this commercial was advertising. Kinda fishy that the woman couldn't tell me where they're located or where their headquarters were located. And when I mentioned Lyme, her response was robotic. Makes me think they've gotten more than a few calls like mine.
Good for us. We have to do whatever we can every day to the best of our ability to educate, inform and blast the ignorant whenever needed.
Posts: 1885 | From here | Registered: Jul 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Right on Beaches. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Thanks LT. I try! And unless parents are doing their own research, they won't likely hear that going GF could possibly help.
Most parents don't understand the gluten thing, don't know about GMOs, think a fast food drive-thru is OK.
I was guilty of the same til kids got sick and I started doing my own research. It's a very long learning curve, just like Lyme/cos. We learn what we learn and we change what we have to change and we do what we have to do.
Yep, lax, believe it or not. I see the commercials on TV all the time and they sicken me.
But the truth always comes out in the wash. My dad always said that.
Posts: 1885 | From here | Registered: Jul 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
thx catgirl!
Posts: 1885 | From here | Registered: Jul 2012
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Even before I got sick, I assumed fibro was viral, fungal, or bacterial related. I still do.
posted
Beaches, what is the toll free number? I think those of us who had the fibro dx should call them and discuss it some more!
Mine: 25 years, then I put myself on 150mg oral clindamycin abx round the clock, and voila, painfree in a week's time.
We're all different when it comes to which tx will work for us. That one was my bingo.
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
OH boy! Can't wait to hear all the reports on these phone calls!
Was it the Fibromyalgia and Fatigue Centers?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Wish there was someone official to report these people for malpractice. Unfortunately the officials would rather diagnose this, which has no test and only gets symptomatic treatment, if anything.
Isn't it amazing that the medical establishment blithly slaps labels on people without any proof but denies lyme even with abundant evidence and tests. This is insane.
Posts: 2888 | From USA | Registered: Mar 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I've not seen these commercials for juvie fibro in my area? Are they focusing on the northeast area maybe?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Ok, it's a call center, saying they have nothing to do with the medical centers - they just collect the info from the caller to see if a juvenile qualifies for the clinical research and then a center will call them back.
So after finding out there were no centers in CA for me to reach, I asked who was sponsoring these clinics. The operator said she didn't know.
I then proceeded to tell the operator that we now know what fibromyalgia is, that it's Lyme disease, and it's time for people to know that.
I briefly told her my story, that after 25 years of fibro pain following a known tick bite, my pain went to zero on a week of oral clindamycin antibiotics. "What do you think about that?" Silence. I then said, "Time to end the lies."
I also told her about the UOS film and that people in UOS are saying it too, that they were first diagnosed with fibro.
"Sorry, ma'am, I have to go - I have to keep the line open." End of call.
So, I say, go for it - call this number and find out, first, whether there are any centers in your area. Then, have this little chat with them and see how long you can chat before you get the "I have to keep the line open" comment.
Alternatively, give them your info and get a call center to call you back and have at it. They're looking for juveniles - ie children - suffering with fibro.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Also, in response to TC here, I don't think I have babesiosis. I don't have the strong fatigue that supposedly comes with it. I think I just have Lyme, and that's what the cause of my fibro was.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Argh - I have a good friend with fibromyalgia who is in a lot of pain and discomfort - she's currently on steroids - yikes.
Just sent her a link to the possible link between fibromyalgia and infections.
Hopeful that she will get tested, but doubt she will. Just another deaf ear sent my way.
So frustrating - wish I could help her.
Posts: 348 | From NJ | Registered: Sep 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You won't get anywhere talking to the call center workers;they are very low on the totem pole.. You need to reach the actual medical offices. ANd even there, I am sure
that the people who own & run these places (who won't be answering the phones!) just care about the endless $$ coming in, not in actually curing people. If you don't cure, you can treat endlessly! Horrible.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Yes, Rumigirl, ca-ching, ca-ching re dealing with us.
I bet the centers know something's up, and that's why they're not letting us contact them directly. Someone should tell them they know a juvenile and could the center call them back, then find out what they're up to and who's backing it.
Bitten in Bergen - you can tell the person that I ended all fibro pain in a week's time on the right antibiotics for me - that might catch their attention.
I stayed on that abx for 5 years and then it stopped working and now I'm doing other stuff. We're all different in terms of what's going to work for us.
Even better, you can tell them they have a chance to treat all symptoms properly, once they understand this is due to a bacterial infection running amok.
That's why folks need to see LL doctors who can help them recognize their history and symptoms.
Posts: 13116 | From San Francisco | Registered: May 2006
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Good work Robin! You found out a lot more than I did.
Don't you think it's a bit odd that these so-called medical centers need call centers?
Based on the operator's response to you and the robotic response I received, I'm guessing they are getting calls from people like us. Keep making those calls folks!
Rumigirl, yes, these people answering the phones are indeed low on the totem pole. But if enough of us call and make our statements (which are likely being recorded), it's just another way to get noticed and raise awareness.
Yep, I know, if you don't cure, you can treat and treat and treat. It IS horrible, especially for these young people.
My new motto is that we have to loud and proud like the AIDS/HIV activists back in the day.
Someone on another thread said that we need our own Magic Johnson. We don't have one, at least yet.
So we have to do whatever we can individually and collectively to get our voices heard and effect change.
LT, I don't think it's the Fibro/Fatigue Centers. They seem to get enough business without advertising.
I personally think this is likely a NE-based program targeting young sick teens and I'd bet it's funded by IDSA.
Most of the NE is endemic, if not epidemic for Lyme/cos. But it's only a matter of time before the truth comes out in the wash.
In the meantime, let's just pray that these young people eventually find truth and healing.
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-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This is made to look like a news site. It is not. It's a public relations website. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Interesting article. Explains it a bit more.
A quote I found interesting:
"About 10 million Americans suffer from fibromyalgia, and one in 20 people worldwide."
When I was dxd in 1980 with FM, there were 2 million people who had it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Because there are so many drugs used for it now, most doctors are quick to diagnose FMS and prescribe whatever the lastest drug rep is peddling. The pharmaceuticals companies are making big $$$ selling those medications for a condition that is a syndrome with no known cause setting aside this latest information about FMS.
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