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New York Times Recent Fibro Article - No Mention of Lyme

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Posted 3/10/2010 11:35 PM (GMT 0)
I saw this one over the weekend (below) and was so shocked at the Comments section that I had to write a comment myself. It amazes me that in nine full pages of comments only two people even mention Lyme, and then it is just in passing.

Having been misdiagnosed with CFS, fibromyalgia, and related conditions for over 20 years, and also having the experience of working for almost two decades in the interstitial cystitis (IC), fibro, CFS, IBS nonprofit sector, I know firsthand how much Lyme denial goes on (and on and on). Once I got a Lyme diagnosis in 2005 and was in the position to actually try to get patient orgs, doctors, and researchers in these related conditions communities to pay attention, I got the cold shoulder instead. It was surreal. This NYT article and Comments section reminded me very much of what I went through in my career, unfortunately.

Here is the article/Comments. Post if you dare, I guess!

http://well.blogs.nytimes.com/2010/03/03/the-voices-of-fibromyalgia/?scp=2&sq=fibromyalgia&st=cse

If there is anyone out there who has lived through a similar experience (being shunned from the "related conditions" community), I would really love to hear from you.

Thanks much!

Posted 3/11/2010 12:34 AM (GMT 0)
Cre,

Thanks for posting this. I just read the article. Seems no one commented about lyme disease. I just did.

Gary
Posted 3/11/2010 12:57 AM (GMT 0)
Thank you, Gary! I am new to this board -- well, new to posting on message boards at all about my personal situation or opinions. Because of my former career I did not feel comfortable posting any statements of my own. I would just read everything and hope that other people would post issues/topics of concern to me.  Now that those work-related chains are no longer binding me, I am venturing out a bit! Oh, and don't be surprised if the Times takes a while to vet/approve your post. I think it took a day or two for my comment to be posted. I started to think that they were banning all Lyme posts, seriously!

Anyway, thanks again. Much appreciated.

Posted 3/11/2010 1:05 AM (GMT 0)
I didn't read through all of the comments, didn't feel like taking the time. Were there very many comments about the lyme connection? Glad to know your comment got approved.

Gary
Posted 3/11/2010 1:14 AM (GMT 0)
From what my Lyme-fogged brain remembers, there were only two who mentioned Lyme. It seems like both were in the context of, you know, the old "well, I was told that I even had Lyme disease at one point, which they said caused my fibromyalgia." Actually, I used to hear that A LOT from the IC and CFS communities, even from the people at the top of the nonprofit scene in the US. Extremely frustrating! I was hoping that NYT readers would be more aware of all of this. I was sadly mistaken.
Posted 3/11/2010 2:14 AM (GMT 0)
I have a physician assistant who says I have fobromylagia, I am way too tired to argue.
Posted 3/11/2010 2:18 AM (GMT 0)
I definitely hear ya! sad
Posted 3/11/2010 5:02 AM (GMT 0)
For a disease that's become an epidemic in America, it sure is amazing that almost all states CDC says there's no lyme. No lyme in OK either, yet my wife and I, and and all of the people in our OK lyme support group have lyme disease. I guess we don't have lyme disease after all. If the CDC says it, then who are we to argue it? What a farce!

Gary
Posted 3/11/2010 1:28 PM (GMT 0)
I've just gotta add to this one . . . I live in West Virginia, which borders two of the most known endemic Lyme states in the country: Maryland and Pennsylvania. I have been told repeatedly that there is NO Lyme in WV. The one doc around here who knows about Lyme (because they have it) started testing patients who came in with lists of longstanding multiple symptoms. Turns out that just about all patients around here tested positive (Igenex). But STILL, try to find any other medical professionals in this region who believe that Lyme exist here. No one will treat it (at least not longstanding Lyme cases), let alone acknowledge it. It is next to impossible to figure out where to turn or to have the strength to manage the multiple frustrations.

Another example: Once I was having a casual, work-related phone conversation with a very prominant ID physician from Maryland. I had to bring up Lyme, of course (I felt it was my duty, ya know?). This physician mentioned that their neighbor had a pretty severe case of Lyme that nothing seemed to help and also that they had no idea that there were Lyme cases in West Virginia. Jokingly, I told this person that it must be because the ticks magically drop off of the deer, somehow, when they cross the state border from MD to WV. This physician/researcher actually believed me and wondered how that could be!? Oh my . . . and I could go on.

This is all completely surreal at best and a travesty at least.

Posted 3/11/2010 2:11 PM (GMT 0)
Cre,

rofl! That is hysterical.
Posted 3/11/2010 3:17 PM (GMT 0)
Dr.'s are not dumb, many are just very uneducated when it comes to Lyme Disease!
Posted 3/11/2010 3:39 PM (GMT 0)
Dumb and/or uneducated, I agree that they come in all forms. Most of today's medical professionals only know what they are taught in school (way, way out of date info), what pharma reps tell them, and maybe what they pick up at conferences. And the conferences are often very one-sided and bought and paid for by, you guessed it, the pharmaceutical industry! Same goes for even the most prestigious medical journals. Medicine appears to remain a good ole boys club for the most part, with the academics espousing from their ivory towers while the practitioners are on the ground trying to figure out what to do with us (or ignoring us), and a few from each group, thankfully, have an interest in Lyme. I sure wish that there were more. I don't think that the CDC and NIH have helped at all (understatement) with our cause.
Posted 3/11/2010 4:21 PM (GMT 0)
My experience has been super similar, JYW! And just recently I lost a very close friend whom I have known for most of my life because he refuses to believe that I am sick at all (or he believes that I am just mentally ill, at most). You see, he is type I diabetic and comes from a family of physicians. He is stictly allopathic and by-the-book when it comes to anything --- "what doctor says" --- you know the type. Physician members of his own family can have rheumatoid arthritis (gee, could that be Lyme???) and lots of other "legitimate" conditions and they are believed, validated. He has also been coddled and validated since he was a child because his disease is "real." He has NO IDEA what it is like to be this sick daily and to not be believed.

He just about threw my Rosner Rife book at me in disgust, telling me that I am a nut and not to be taken seriously because I would consider such bogus therapies. I had to stop talking with him. It is sad, really heartbreaking.

I also have a friend I have known since college who has been HIV positive since the late 1980s. He feels fine and stopped talking with me a few months ago because he does not like to talk to sick people. HUH?

Why does this happen??? It is evil to me, seriously. Really hurtful.

Posted 3/11/2010 5:46 PM (GMT 0)
IMHO, it happens because they're too immature to deal with their own inadequacies, so they certainly don't want to deal with anyone else's. And who needs "fair weather" friends anyways? Aren't "true" friends those who stick with you no matter what?
Posted 3/12/2010 1:41 AM (GMT 0)
Thanks, Razzle. I needed to hear this from someone who gets it. I may need to hear it again at some point 'cause I just keep finding this type of "fair weather," "add insult to injury" situation with so many others because Lyme is so misunderstood, as you well know, I'm sure.
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