There have been several studies that found a strong link between Lyme disease and Amyotrophic Lateral Sclerosis. The Halperin paper is one. The Halperin paper found Lyme infection in nearly all ALS patients in their study group, but Halperin, a long-time “debunker” of chronic Lyme disease dismissed this as a “coincidence” and the paper’s authors even fudged the numbers in their summary to make the Lyme infection rate seem “only” 47%.
Not too long ago, scientific research papers were freely available online but nowadays, most are zealously guarded by a few publishing conglomerates that charge about the same for an article as you would expect to pay for the latest music DVD of a superstar. When you purchase, you give them your name, address, email address and IP address and have to agree not to reproduce the article. The whole system is designed to keep medical breakthroughs secret to the public in general and journalists in particular, and to intimidate and prosecute those who seek to uncover such secret knowledge. Aaron Swartz sacrificed his life trying to change this situation.
No wonder that the average person with ALS has no inkling of the fact that there is solid research, showing that ALS is strongly associated with Lyme disease.
The Halperin paper mentions in its first paragraph (green box below) that nine out of nineteen ALS patients tested positive for Lyme. The notoriously unreliable ELISA test was used, a test with an unacceptably high proportion of false negatives. So that would be 47% of ALS patients testing positive for Lyme.
"It’s a plague! It really is," asserted Howard Stern in an interview with Daryl Hall, who suffers from Lyme disease along with his wife and two step-children. “A lot of people don’t know this, but it’s a serious problem.” Stern went on to say, as Hall agreed, that Lyme disease is a plague. As two New Yorkers who are surrounded by whole communities being struck with the disease, Stern and Hall are not alone in recognizing that Lyme disease is the silent epidemic that’s taken over their city.
Jane Marke, MD believes that Lyme disease is the new AIDS epidemic in New York. “I encounter so many people here who either have Lyme disease or have a family member afflicted with the disease. It’s become a serious issue, but nobody is talking about it,” Marke said.
Actress Karen Allen (Raiders of the Lost Ark), who was struck with Lyme 12 years ago, describes the scope of the problem. “I hardly know anyone whose life, their own or family members, is not being impacted by Lyme disease,” Allen said. “It is a devastating disease that has reached epidemic proportions. We must report accurately on the scope of Lyme and other tick-borne diseases.”
So I was quite hesitant to share these photos, but I think it’s kinda important that I do.
At the weekend me and my sister threw a surprise birthday party for our dad.
I felt pretty bad earlier in the day when the first photo was taken, so I took my meds and had my sister do my hair and make up for me (I was too exhausted to do it myself). I took the second photo about two hours later just as I was about to head out the door to the party.
Throughout the whole evening I had people coming up to me telling me “you look so well!” And “you look so much better!”. I even had one person ask me if I was ‘on the mend’ because I was out.
I know they meant it as a compliment, but a part of me wanted to just say “I look ‘well’ because I’ve absolutely covered my face with make up and I had to take a lot of medication in order to come to this thing”. But, as I was having a good time, I didn’t want to make anyone feel uncomfortable. So I just nodded and said thank you.
The point of me telling you this is so people will realise that just because someone LOOKS fine, it doesn’t mean that they are. Even though I had a good time at the party, by the end of the night I was exhausted and in a lot of pain, and I’ve now spent three days in bed recovering. And that’s something that no one besides my close family gets to see. If everyone saw me on a standard day they wouldn’t have said all those things to me.
Invisible illnesses aren’t really that invisible if you look a little closer. Please remember that if you know someone with chronic pain or illness.
chronic illness skills:
-really good at getting blood drawn
-doing everything in pain
-know the best heating pads
-will sit on the floor if there are no chairs
-smarter than doctors sometimes tbh
I’m so sick of being stereotyped because of my age. Stop telling me I’m too young to be sick. No one is too young to be sick. I’m told this by everyone, including doctors. Yes doctors. The people that are supposed to help you. I’m written off and pushed aside in the medical field because this “couldn’t possibly be happening to me, you’re too young.” Enough. I’m not a number, I’m a person and I matter.
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