I, like many here, was told that I had MS when I was about 30yrs old. Eleven or so years later and wasting away, I found that I indeed had/have Lyme and cos.
So I have been treating Lyme now for years.
I still get news from the MS society. I just never thought of calling and taking my name off the mailing list. Well, I was looking through the magazine "Momentum" from the National MS society and it just dawned on me. Boy am I thick, this magazine has some hefty advertising in it. Mostly from the drug makers of MS drugs.
None are cures, they advertise to "keep you active longer". Having had this dx, and lived with it for years, and knowing the progress I ahve made on abx, it just makes me so sad. There was an article in the Magazine about Michele Obama's father having MS. I didn't read it, (not reading well lately - again)but maybe she would be a sympathetic ear to what we are going through?
Anyway, yesterday I received a postcard, again from the national ms society.There is a NJ Lobby DAy 2009. Thurs March 5th at our state house in Trenton. Transportation is available, asking for "ms advocates to take over Trenton". It mentions ms awareness week....
Listen, I have nothing against the National MS society. Maybe I am feeling a little jealous that they seem so organized, and that they can afford these mass mailings. I just wonder who their lobbyists are, do the drug companies lobby for them? I am not politically savvy. It would certainly benefit the companies making all the expensive drugs.
I was on a very expensive tx for MS for over 8 years. In those 8 years, the insurance and perscription company never questioned me or my doctor. Never wanted copies of lab results or doctors notes. Never questioned my clinical dx, because everthing else was "ruled out". Never, ever denied me my daily injection of copaxone, retail value at the time of over $800 a month.
Like I said, I just needed to vent.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
It seems to me that as long as the pharma companies are making money that everyone is happy, even the insurance companies. Makes one wonder???
Posts: 4035 | From Mississippi | Registered: Jul 2008
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bettyg
Unregistered
posted
you might consider going and ASKING those questions to their leaders there! if they don't have time to answer them all, ask them to email, call, or snail mail you.
i agree ... cancer/aids/hiv, etc...look at the UNITED ORGANIZING THEY HAD TO DO.
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hey!!! Thanks for posting! You have made some good points and asked very good questions! Wish you had posted in "Medical Questions" as more people are in that forum.
Glad you are in treatment and seeing results!
Best Wishes -p
Posts: 641 | From So. CA | Registered: May 2008
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
The pharma money definitely is in "maintenance" drugs. Too bad we don't have any pharma White Knights. Most of our drugs are generic and there is no magic bullet anyone can make a ton of money from. That's how AIDS got ahead of the game, with pharma help against insurance companies. The 2 giants.
I have a friend with MS who definitely has been exposed to LD and is now being tx'd with interferon injections. She says she "doesn't have any Lyme symptoms." I try to tell her MS is her Lyme symptom. She says she's been tested multiple times, all negative. I told her about the tests. Now finally I have her saying she will talk to her (ms) dr. She might just be trying to shut me up.
What kinds of arguments really make a difference if the person already "knows" she has a different disease, notlyme?
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
njlymemom
Such great writing.
You need to get your post in a publication. Excellent writing exactly as it is. Superb content. All you need to do is insert (LymeNet) for "here" and add a link or two at the bottom.
Seriously. This needs to be circulated.
You are so right on. And this is mirrored with FM, ALS, etc. you name it.
Please see what you can do to get your letter out. Be sure to at least save that you your file.
I love the conversational, easy tone. Very effective as a heart-to-heart. And important for others to see.
I hope you will consider this. Check out the women's magazines first such as Glamour. I think they actually did a few articles on lyme that were accurate.
Reader's Digest, too. First, copy it and mail it to yourself but do not open it. You need the postmark in a sealed envelope in case you need to prove you wrote it.
You might even get paid for this.
If you want to make some changes, PM me and I can make some suggestions. But, I would not do much at all, really.
Does anyone else have suggestions?
Oh - you won't get money for it but NPR has a feature called:
Uh . . . I can't recall . . . a person just talks for minute or so . . . I can't remember.
But, in trying to find it, I can see "This American Life" building upon your letter for a program.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I can definitely relate to so much of what you are saying here.
I was one of those always giving donations to the M.S. society. Still to this day I keep getting mailings asking what my contribution will be this time.
Needless to say, I'm not sending more money to them and have swapped my loyalties.
I know that one time they called asking for more donations and they caught me in an argumenative moment??????
So I started talking about M.S. quite often being lyme. I'm sure I was just talking to a "paper pusher" and at first she was pleasant and listened, but about the time she knew I wasn't giving any more money, she ended the call.
No, it didn't do any good to spout off to her, but in a warped way, it still made me feel a little better, atleast for that moment.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Keebler, thanks for the kind words. I sent you a pm.
Cathy, I did the same thing the other day. I called the MSSociety to stop all the mailings, since some were promoting the neuro who misdx me (she is holding seminars about new treatments).
I wonder how many docs get kickbacks from the pharmas? Oh not implying anything about this neuro....no not me.
Sounding off to someone on the phone who hasn't a clue was unfair, but I still enjoyed it. I know she thought I was a wacko...she isn't the first nor will she be the last
Take care
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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This entire subject, of everything from Big Pharma to managed care to "how did we get this way?" with our medical care is a huge area for discussion.
As some of the others have posted also, check out most of our common magazines (especially those geared towards women and older individuals).
Count how many ads there are for prescription drugs in there.
At one time advertising pharmaceuticals like that (other than OTC) would have been considered unethical.
Today it is just called marketing.
It is geared toward demographics of that magazine --- what symptoms, conditions, etc might these readers be having,
and how can we (pharmaceutical company) encourage these readers to wonder if our product would be of advantage to them?
Same strategy as selling shampoo and clothing.
The mentality here is simple: consumers are visually attracted to the ad, "new" is better than "old", and "costly" is superior to "cheap".
It's not rocket science.
When I used to teach (guess what? of all things, Medical Ethics!), I used to have a class devoted just to these ads alone.
The students used to really marvel at how convincing some of them were --- the pictures, the selling line.... even the drug descriptions on the next page (required by law) were condensed to the most basic info.
You will probably never come across some of the professional magazines that physicians receive.
If you ever get a chance to visit a medical library, pick one up.
Virtually every other page is a pharmaceutical ad, with snappy photos and a quick-sell byline.
Now, for the worst part ---- you would be surprised how many physicians learn about the drugs they are prescribing FROM THOSE ADS.
Detail reps that visit the offices do receive training in describing the drugs from their companies.
However, remember who has trained them. And is paying their commissions.
In my own case, I have spent the past 9 years being treated for rheumatoid arthritis, despite NO TEST EVER COMING BACK TO CONFIRM THE DIAGNOSIS.
I have been given more NSAIDS than would fill a truck, steroids (which made me unbelievably sick), chemo (ditto), and then the Big Guns ---- biologicals.
These drugs cost THOUSANDS of $$$$ a month; I was on them for 4 months!!!!
And, guess what? I GOT SICKER.
I do not even want to calculate the costs of the tests (even repeated, which my dr had no trouble ordering) and the meds and the time lost from work and the disability leaves.
And my insurance company had NO PROBLEM with any of this.
Neither did an arthritis organization I joined (and got their magazine and lots of requests for donations too...)
In comparison ---- my one dinky little Lyme test which 9 years ago came back Equivocal,
was treated with 3 weeks of doxy
was repeated once, and then NEVER again
because the insurance company said it wasn't medically necessary.
Lyme is simply not good business, for Big Pharma, for many docs or labs.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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