posted
You know if these mainstream nut job docs cared as much for lyme patients as they did to the covid patients (and if our government did too) this world be alot better place. Just saying.
And no, I'm NOT discounting and insulting people who have covid and saying they matter less. Its very sad all around.
I'm probably not the only one that thinks this. I'll leave it at that. ✌
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
I'm feeling the same way. It also depends on the doctors when they know you are sick. Not tests only. Symptoms should matter. When you just suddenly have multi-system symptoms. Tired of it all. It is just too crazy.
Posts: 509 | From southern new jersey | Registered: May 2003
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posted
This is very interesting. I believe there's a clear pattern in how the health care system handles new illnesses.
There's a book titled Osler's Web. It's the history of CFS (ME) as a new illness, written by an investigative reporter. It could also be the history of AIDS, FM, and Lyme disease. I remember news about all of these new diseases as they were discovered.
First, newpapers were reporting every day that more people were dying with mysterious symptoms, and the reply from the CDC was that it was all coincidence. There were no new diseases.
Finally, someone said it wouldn't hurt to check it out, and HIV/AIDS was discovered. There was a lot of excitement and many wanted to be involved in finding a good treatment.
Soon after that, doctors who lived in small communities and knew their patients well started contacting the CDC to ask about an illness outbreak that they never seen before. They were told there are no new illnesses.
The book goes into detail about how CFS was mishandled by the CDC, NIH and others.
Then FM became was discovered. I get the feeling it got into the AMA system fairly quickly. I'm not sure why.
Then, more and more people became ill with Lyme Disease. I am sure I got it in 1970. So, that's 50 years of denial that LD even exists, within the general health care system.
I've been diagnosed with CFS, FM and LD. None are to be taken lightly. All are complicated, and take a lot of a doctor's attention and time. But, there doesn't seem to be a place for new, complicated illnesses in the health care system of today.
At least there is serious attention being given to new viruses that can decimate the population if left unchecked.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Here is a glossary to remind all of us of what people are facing in the diagnosis of Lyme disease and sometimes even COVID-19! (Many people suffer the coronavirus with completely different symptoms.)
CFS is Chronic Fatigue Syndrome,
ME is Myalgic Encephalomyelitis (ME), commonly known as Chronic Fatigue Syndrome (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.
FM is Fibromyalgia, a chronic disorder marked by symptoms including pain, fatigue, sleep disturbances, depression, and thinking and memory problems.
LD is Lyme disease (also Learning Disability, which might be mis -diagnosis of Lyme disease.)
"Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic" is a book written by Hillary Johnson, published in 1996 and reissued in 2006.
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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posted
Thank you, Ann of Ohio, I thought my post was getting so long, I decided not to put in that info, but it is very important.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Hey, Daisys, thank you for your excellent post! I did understand everything you said.
I am always flummoxed by all the acronyms we have to deal with these days and thought it might be helpful to recall all we are dealing with with their proper names.
Thanks again.
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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posted
Yes, and I wasn't going to mention RLS (restless leg syndrom) and PLMS (periodic leg movement syndrome), both of which I have been diagnosed with.
I don't seem to be extra sensitive to chemicals, and many related issues, which I know others are dealing with.
It could fill a page, and is very tiresome.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
quote:Originally posted by Kristyn: You know if these mainstream nut job docs cared as much for lyme patients as they did to the covid patients (and if our government did too) this world be alot better place. Just saying.
And no, I'm NOT discounting and insulting people who have covid and saying they matter less. Its very sad all around.
I'm probably not the only one that thinks this. I'll leave it at that. ✌
Hi Krystin,
You definitely have a point; if Lyme patients received the same resources, attention and care as Covid19 patients, there would likely be much less suffering and more recoveries.
That said, one can't completely blame "the mainstream nut job docs", as they are indoctrinated early in their training. I have heard this from many. You can blame the powers that be for perpetuating this travesty.
It is bad enough that many mainstream doctors are ignorant of and/or in denial of Lyme Disease, but the sadder truth is that there are a number of "Lyme Doctors" in practice who are allowed to financially take advantage of their vulnerable Lyme patients. I speak from years of personal experiences.
And, with all due respect to our LymeNet moderators, why is acceptable to label mainstream doctors "nut jobs", but not to warn others here of negative and/or harmful experiences with Lyme Doctors? If the Lyme community doesn't protect itself, who will?
Posts: 1880 | From Earth | Registered: Jul 2013
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Agree Phoiph There are a few LLMD's in Florida that are totally wack jobs, wouldn't take my animals to them. Of coarse I would never send their names to any Lyme sufferer. So important to research each LLMD.
I want to know why it's OK to keep cancer patients on chemo treatments and meds for years yet Lyme patients can't get more that 14 days of an antibiotic. So much MONEY in ALL things cancer.
A lot of money in MS too. I went to a MS treatment center. You name it and it's all under one roof. Blood work and labs, neurology practice, pain management practice, optometrist center, audio and hearing center, kidney and dialysis center, urologist practice, pharmacy, MRI,Cat scan, radiology services, wheelchair and stroller salesmans, MS cooling jackets as patients can't control their body temperatures(sound familiar?), curtesy vans and transportation, ect. . . .
I figured I would tap into their specialists so I went for eye appointment. 2 hours long!!!!! Can't beat them, join them.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Nail right on the head Bonnie. I am watching the news now and they just did a story of 2 college age guys rollerblading across country to raise money for cancer. I looked right at my mom and she knew what I was gonna say. It kills me.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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