Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Periodically I get upset about the way the general public and medical world treat the concept of chronic Lyme.
I don't understand why people will buy a diagnosis of RA or lupus or MS in a heartbeat, but scoff at the concept of Lyme Disease.
As an example, a friend of mine and her dog were hiking in a state park in NJ recently. She'd forgotten to put the dog's tick collar on. When she got home, she found three ticks imbedded in her, countless more on the dog.
How many people do you know personally who "had" LD, and were "cured" by a short course of abx, but have all these "strange symptoms" that no one can explain except to maybe say it's MS or RA, etc.?
Or how many people do you know who have all the symptoms of LD but would prefer to think they have something else?
I don't get it.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Join the club! You are right - it just doesn't make sense.
The answer tho, is quite complicated.
I think lyme disease is misunderstood.
I think doctors can be arrogant and think they know everything and therefore know little.
I think the other illnesses are more accepted and if a doctor were to change the dx on a patient, then perhaps previous dxes could have been wrong, opening up a can of worms for potential lawsuits.
My brains tired now....more to come later....
cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I know someone with "Lupus" who is just getting worse and worse and has alot of pain.
She's not interested in Lyme.
I don't get it either.
Heather
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
I just saw a commercial on tv last night for something called - restless leg syndrome... Now, i have never heard of that "syndrome" before, have you? Apparently, they have a pill to take for it now.
They have all these diseases that have no known cause, yet they do have drugs to take for them, so its all about the money it seems.
Hell, they call alcoholism a "disease", but a person can choose NOT to drink, so how is that a disease? Is there a bacteria or virus that makes someone drink?
My opinion is they use the word disease too loosely, and the fact that they won't even consider borreliosis, and tick-born coinfections, responsible for some of these ailments blows my mind!
They clearly saw the damaging effects of syphilis spirochete can do when left untreated.
And, with the CDC's criteria for testing LD, means that most people are left untreated, and suffer with discomfort for years, with a bunch of "I don't knows" from their ducks.
I have always agreed - there is more money in research, than a cure. The pharmaceutical companies are pushing so many drugs for these unknown diseases, if they find a solution they would lose alot of their money, and the grants.
I'm even afraid its happening to some of our LLLMDs. Some LLMD's also have ulterior motives when alot of money is involved - sad but true...
Posts: 94 | From Maryland, USA | Registered: Jan 2005
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
Here is a good book that everyone should read. It will literally shock you into realizing how the AMA, FDA, CDC dont really protect us at all.
posted
My daughter has Lyme, has had it since she was 11 and is now 24. Her little girl was born with it, who is now 3. My X husband has it, he says he doesn't, but has all the classic symptoms, hurts all over, neck pain, head pain, you know all the things. I have a friend who's husband has Lupus, he keeps getting worse and even had a heart attack a couple years ago. He is an avid outdoors man, or was.........but they don't want to hear about Lyme either. My friends daughter has all the symptoms my daughter had for so many years, but they don't want to hear it either. I know a previous co worker I looked up just to tell her what I had learned, she doesn't want to hear it and has never called back to get any information........what is WRONG with people???? It is a blood test for crying out loud, how many other tests have all these people gone through, what is one more???
posted
Do you all think that, drug companies and specialists, by breaking symptoms in to different syndromes without known cause, they can cash in on medications as bandaids?
Antibiotics get to the root of the problem in lyme but there is not money in it. It's not worth it to them to find a new antibiotic specifically for lyme disease or to treat it with doxycycline (a cheap one) for long enough to prevent full blown disease. If they can say it does not exist they get all kinds of $$$$$ for not treating the underlying problem. all these new drugs for symptoms are golden geese for them. Short term profits are great. That is what they are in it for.
Actually, watching "and the band played on" the other night I was struck at the paralells to lyme.: the secrecy, continued denial until people get sued (blood banks), egos of big shots clouding progress and truth, fear, and again more denial from the powers that be. over 25,000 Americans had died of AIDS before president Reagan spoke about the topic publically.
Posts: 446 | From California | Registered: Jul 2004
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posted
Hey Monica, Brain is not doing to good today,so bare with me. I highly agree with What Kara had to say. There are times when the controversial side of things make alot more sence then what our system wants us to know about, don't you think that we (people in general) also may be used as ginnie pigs, man made illness,diseases. I'm going to leave you with that thought,stay open minded, learn and stay positive. Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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posted
Go figure! What people don't understand is that with Lyme treatment, you can get better!! If you actually have LYME but are treated for MS, or ALS, or Parkinson's, or Lupus....you will continue to go downhill!
With proper Lyme treatment, you have a chance to get your life back!
Another book for opening the eyes: Death by Prescription by Ray Strand.
People trust their doctors TOO much sometimes!
------------------ Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express! oops! Lymetutu
[This message has been edited by Lymetoo (edited 11 July 2005).]
posted
Pippy You said that 25000 people died from aids before Old Ronny said anything publicly about it, but they won't have to say anything about lyme, because by the time some people die from Lyme, it'll be called something else.
Don't you hear the news, lyme is rarely fatal, if at all. So i dont think you'll be hearing from George W anytime soon.
But if you talk to him, tell him, "I found the WMD's (weapons of mass destruction), THEY'RE IN HIS BACKYARD!"
Posts: 94 | From Maryland, USA | Registered: Jan 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
To most people the concept that Lupus, Ms, RA etc... ,acceptable diseases, with no known cause can have an infectious trigger is beyond belief. Because I'm a teacher and not a Dr. (and blonde too) I'm generally not believed. Of those who get it or suspect lyme, they can't believe the struggle for good treatment.
Only those who have seen me very sick and now, active, can understand the power of long term anti-biotics.
Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
There is just much going on below the radar screen with diseases. It isnt just medicine.
I remember several years ago when I was given a perscription for severe menstral cramps. The insurance told the pharmacist they would pay for the drug after I turned 60! 60! Uh...ok.
The pharmacist told me 'off the record' that the real reason probably was that the insurance company owned stock in a competing drug.
It is just like the FDA approval of the Lyme vaccine. Later we found out that members of the advisory committee owned stock in the company that made the vaccine.
But they signed a statement that this would not affect their decision. Right.
posted
I get upset, too that some just won't listen. I was reading on a CFS/FM board last night and there is so many there getting dx'd with lyme.
Some won't even think about getting tested and I can't understand that. They don't even want to hear anything about lyme. This board is where I first found out about lyme and I'm very greatful for that.
There is a pharmacist on there that was dx'd with lyme a few years ago. He doesn't believe that you can have lyme after taking a round of abx. How stupid can you(he) be?? I got so mad reading his posts. He was really putting down Igenex and that really made me mad and I don't get mad very easily or very often.
Anyway, now he has a dx of CFS and he's happy with that. He's supposed to be educated but that is just stupidity that he can't see his problems are still from lyme.
I'm mad now just thinking about what he wrote. I wish I knew how to post the link to his post here so you could read just how stupid he is. I'll get off my soapbox now.
posted
I agree with what everyone on here has wrote.
I have a friend who is very ill. She was Dx with Crohn's Disease. She is extremely paranoid, can't follow instructions, has severe headaches, neck pain, joint pain, heart problems and every single symptom on the list. They(the ducks) have told her she also has "Fibromyalga"(sp?)
What can you do? I have given her all of the information. She refuses to look at it. She actually said "I can't have two diseases" She has been on and off steroids for 20 years now. I feel bad for her, but there is nothing else I can do.
I told her when she gets sick enough-- "Call ME!!"
There is a very old saying -------- You can lead a horse to water but you can't make them drink!
Posts: 986 | From Michigan | Registered: Dec 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
My friend's mother always said, "You can lead a horse to water, but you can't make him swim!" (equally true I think )
I know a young boy who was dxed with lupus 7-8 years ago. I sent them all the literature I had regarding Lyme disease. Fell on deaf ears.
My friend doesn't know what's wrong with her, but after antibiotics she had an "allergic" reaction. I tried to explain it was probably a herxheimer reaction, but she didn't want to hear it. Preferred the diagnosis of fibromyalgia.
My brother-in-law had every symptom of LD there was. I shared all my Lyme literature. He didn't want to pursue it. Preferred to be on disability.
Of course, some people DO listen, get treatment, and get better. I should concentrate on those success stories. It's always the ones that didn't get help that bother you though.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Yesterday at my perodontist appt he was telling me how a great percentage of his patients have so many other health issues besides gum disease. He said their list of symptoms goes on and on.
He was telling me about a 37 yr old female that has to write directions down on how to get to work and home. The ducks are saying it's early dementia. Come on! 37 yrs old there's got to be a cause.
I've got to believe the true story on TBD's will happen soon. I've got to!!!!
Pam
Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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