Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, My. How very sad that this article has so many errors in judgement - but that it also reflects what is happening at the top medical centers with young kids who mostly likely to not have the made up umbrella term of FM.
There is no way to comment on this article, although the author can be contacted that will leave most readers still in the dark without any kind of comments from those more educated than the author. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Very sad for kids to be suffering like this.
There's no place to leave comments at the site of the article, but we can contact the writer at [email protected] - I just sent her a detailed message about fibro being Lyme.
I recommend that a lot of us send her an email, and feel welcome to say here that you did.
Also, if you'd like to repost the article on other Lyme sites so Jennifer can hear from lots and lots of us!
Posts: 13116 | From San Francisco | Registered: May 2006
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
I can't believe this is even happening! We need everyone to speak out for these poor children.
Now they're saying that fibromyalgia causes cognitive probllems?
Give me a break! This all started out with a muscle problem and now it has grown into a full blown what seems to me, to be a case of lyme disease that has gone undetected like most!
Please, anyone who has clout and can help these poor children, please speak up now!
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
If you have a facebook account, I do believe she is on it. Please, this is crazy! Has anyone looked on the New England Journal of Medicine to find this article?
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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posted
I was dxd with FM in 1980... it was like you said... a painful muscle issue, along with fatigue.
Now it's a basket for all that ails you!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
give-me-a-break!!! i just dont have the strength to fight this ignorence anymore
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For those with energy to write, a copy of the note to her editor and the publication bosses would be good, too. Not to get the writer in trouble but to share the detail with the most staff possible. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yes, I would like to know the contact info for the Fox news site that she's on.
It takes a lot of patience to deal with the fibro misinformation. Just keep doing it, since one day people claiming it's fibro will at least have heard about Lyme.
What makes me so clear is I had a known tick bite, so I can date every symptom. One year later, stiff neck. 18 months later, full-blown fibro symptoms.
So, a 25-year history of symptoms. Then I treated with oral clindamycin for one week and my fibro pain went to just about zero. That's motivation enough for me to hang in at these sites and let them know!
Posts: 13116 | From San Francisco | Registered: May 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
More money to be made for the pharmaceuticals. Now they'll be splashing commercials aimed at children and fibro.
Will this cycle of treat the sx, forget the cause ever end?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Lymetoo, did you ever hear of gluten sensitivity causing all the symptoms mentioned in the article? It reads like a Lyme symptom list.
For awhile, we thought I had candidiasis and I was treated for that. Didn't stop the unknown Lyme symptoms though. That was the closest I came to a diet problem.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
The list for FM has sounded like a Lyme list for about 15 yrs.
It's really a travesty.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You know lyme started as a misdiagnosis of juvenile rheumatoid arthritis. Now this. Are we going to soon have children with juvenile Parkinsons, MS, alzheimers? Makes you wonder about the caliber of medical professionalism in this country.
Posts: 2888 | From USA | Registered: Mar 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
The IDSA guidelines authors and their ilk have blood on their hands for burying the epidemic, so that millions of people, including so many children, have to suffer so intensely and die. It's unconscionable.
Posts: 3771 | From around | Registered: Mar 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Criminal is what it is.
Posts: 2888 | From USA | Registered: Mar 2004
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
All I can do is hope and pray that parents of kids diagnosed with this junk dx know better and don't just accept it.
Parents need to research, research, research and advocate on behalf of their kids in all areas, most especially doctors and the schools. As the saying goes, it's a tough job, but someone's got to do it.
Unconscionable and criminal are two appropriate adjectives to describe what is occurring regarding our sick children.
Posts: 1885 | From here | Registered: Jul 2012
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
It takes a bit of time and energy, but I do recommend us going on other sites that focus on the other diagnoses and mentioning Lyme to them. Some will listen and get to a Lyme doc.
I have learned to say "I" and "my" fibro turned out to be Lyme, rather than tell them theirs is, since they may not ready to hear it. The ones who are interested respond.
Posts: 13116 | From San Francisco | Registered: May 2006
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Robin has the right idea. Helpful & not pushy.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
::sigh::
I've done my time/sentence on other boards when my family was diagnosed with those "other" diagnoses.
After much research and at the suggestion of a very wise doctor, I got my daughter tested and treated for TBI. Lo and behold, Lyme and company were at the root of it all.
I have found that there are those who would rather cling to a diagnosis of FM, CFS, MS for whatever illogical reason instead of taking a dip into the Lyme Disease and co-infection pool to explore another valid reason for their symptoms and potential treatment for their illnesses.
I saw this numerous times on other boards, and actually in my personal life.
One person I know has been dx'ed with MS and FM. She accepts it fully, despite my pleading for her to get tested/treated by an LLMD. She grew up going to wooded areas in the northeast. And she lives in the woods! Someone in her family works at Mayo, and as we know, they're gods over at that place. Lyme? No, you definitely don't have THAT!
Another person I know was actually CDC + for Lyme and is now in an autoimmune crisis that has just magnified over the past couple of years--gone from bad to worse. I pleaded with her to go back to the LLMD she had been seeing--yes, she had actually seen a LLMD!! She is doing the rounds of second, third, eighth opinions and is getting nowhere fast.
I don't waste my time or effort anymore. I've done whatever I could to help these two. It sickens me on so many levels that they continue to suffer, but in the end you can't get blood from a stone.
As for me, I saw the CFS/FM diagnoses as a set of symptoms that had to have SOME cause. Healthy kids don't just become so very sick for no reason. I made a choice to search for answers.
Posts: 1885 | From here | Registered: Jul 2012
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What I have found is that most do cling to the diagnoses they've been told they have. We can't save everyone if they're not interested. All I can do is plant a seed, as in mention the word Lyme.
So I do it for the few who are ready to listen, who are searching beyond the labels for what ails them, and yes, am able to get those interested to a Lyme doctor, including saving some children's lives.
So that's my suggestion - for anyone who has the patience to go on a site with a diagnosis, preferably that you had, so you can relate to the change from that diagnosis to Lyme, and to know you are there for those who are more open.
You are that open kind of person, sounds like!
Again, it didn't work when I said they have Lyme. It worked when I said my fibro turned out to be Lyme, and let them think about it. If someone truly engages, then I can chat more candidly with them about how it all works.
Posts: 13116 | From San Francisco | Registered: May 2006
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I am going through something similiar right now in Florida. The brother of a good friend of mine lives in Ft. Lauderdale and has a 12 year old daughter. Two years ago they took a trip to Virginia and the daughter got bit by a tick and developed a bulls eye rash.
They took her to a doctor, and he gave her 10 days of an antibiotic (Bactrim I think). Afterwards she complained of always being sick. Headaches, tiredness, severe joint pain, muscle pain, dizziness, and cognitive problems, all that have progressively gotten worse. She also complains of her muscles twitching.
The girl had been completely healthy before the tick bite, no health problems at all. It is now two and a half years since the tick bite and she is very sick, bedbound most of the time. She was not able to attend school all of last year and this year so far.
The parents are good people and have done everything they can to help. The doctors have diagnosed her with juvenile rheumatoid arthritis and juvenile fibro. She has been in the hospital several times.
The absolutely horrible thing is that the doctors were told about the tick bite and EM rash, but they insist that Lyme is absolutely not her problem. She has been given steroids many times by these docs.
I have tried, without being pushy, to talk to the parents. They did listen to me, but they said that when they talked to the doctors about it, the doctors assured them that it was not lyme, that juvenile RA/fibro were what she had.
The parents have absolute trust in the doctors as the experts, and refuse to consider or talk about Lyme with me anymore. It is just a horrible, horrible situation. The ignorance is just astounding. Astounding.
posted
Well, juvenile RA and fibro are classic Lyme diagnoses - I think the trick here will be to think what kind of info you could get the parents to look at, and maybe folks here might have some suggestions about that?
Posts: 13116 | From San Francisco | Registered: May 2006
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Maybe this will help. I always try posting the videos as who am I to try and contradict a MD when it come to TBD's.
I've found it easiest to show a couple of u tube video's on the controversy.
He is a saint and I show this to help illustrate how MD's have been prosecuted so normal MD's shy away from doing anything but following the flawed IDSA guidelines.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Also as a follow up. Our daughers Babesia and neurologica symptoms were so bad in the beginning we didn't even know about the bone pain.
Hard to notice when the chronic fatigue limits ones ability. Dr. J didn't miss it though. Just another reason to thank Dr. J.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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