I'm curious, are there other diseases or syndromes where the dignosis and treatment are hampered by radically different opinions?
Nancy
Posted by Marnie (Member # 773) on :
Autism and vaccines.
Posted by Mo (Member # 2863) on :
Well -
in AIDS, until they got radical (such as spilling blood on the steps of St Patricks Cathedral) .. they were treated somewhat like Lyme patients. -- but they still do not know or divulge efficatious treatments or info on AIDS.. simply they have found drugs to market. Whether or not they are efficatious is another story --
In Cancer, the major medical businesses and FDA found an expensive treatment to tout (albeit with a ****-poor efficacy rate which has not increased in 50 years) .. as they have run all other more progressive treatments with much better results literally out of the nation on a rail.
Lyme is a bit different. Clearly there are financial ties and interests (from insurance to top government officials to real estate)... as well as unique political concerns that make this disease different than the others.
Think about it. Those who are trying to say the chronic condition is remote, and in early stages is treated in a matter of days --
are the same folks involved in developing a VACCINE -- (a vaccine for a benign illness?)
Something ain't right.
We have enough info and enough patients and enough reports to blow this out of the water.
It's really a matter of getting organized.
-- the fraction among LL activist groups is a real drag and detriment to the cause IMO.
Mo
Posted by luvs2ride (Member # 8090) on :
Rheumatoid Arthritis
Posted by Happy Camper (Member # 8995) on :
Myasthenia Gravis
Chronic Fatigue Syndrome
Fibromalgia
Posted by Jill E. (Member # 9121) on :
Yeah, I'll second the vote for Chronic Fatigue Syndrome and Fibromyalgia. I got CFS during the big outbreak in the summer of 1984, before CFS had any kind of name - even before it had all the names like Chronic Epstein-Barr Virus, and my favorite - yuppie flu.
It was the same as being a Lyme patient - going from a young, athletic, successful person overnight to someone who had to crawl across the floor of the room, couldn't remember where I lived, etc.
Was told I was being an emotional woman, I was a workaholic, etc.
At least CFS and fibromyalgia have a name now, and while many doctors still won't recognize it, can even be a valid claim for disability.
My Lyme experience of the past four years is very much like my CFS experience - I feel like I'm reliving it. The only difference is having insurance reject paying for antibiotics with Lyme, versus back with CFS there were no medications available then - just the beginnings of some very experimental antivirals.
And the medical community wonders why we go running to alternative practitioners, herbs, etc. when we can't get help!!
Thanks for letting me rant.
Jill
Posted by Aniek (Member # 5374) on :
Cervical cancer. Conservative politicians and activisits have publicly voiced opposition to the HPV vaccine, the vaccine for the virus that can cause cervical cancer, because it might encourage premarital sex.
Physical disabilities. There was a time when a child with a disability spent her entire life in an institution away from her family.
Most mental disorders.
And I will repeat, HIV and AIDS.
Posted by Ann-OH (Member # 2020) on :
Morgellon's disease.
Posted by Aniek (Member # 5374) on :
Pain treatment in general. We use law enforcement standards to investigate and prosecute drugs for treating chronic pain patients. All under the name of the War on Drugs.
Posted by Areneli (Member # 6740) on :