Are you Lyme Aware?
More than a few of my online friends developed MCS/ES in addition to Lyme Disease.
Miss D exposes a few common myths…
Hello! It’s not only Lyme Awareness Month but also Fibromyalgia Awareness Month, Food Allergy Awareness Month, Multiple Chemical Sensitivities (MCS) Awareness Month, Myalgic Encephalomyelitis (ME) Awareness Month, and Asthma Awareness Month. OK, so I think fibromyalgia, ME, and MCS technically only have an awareness DAY, which is today, May 12, and that’s not fair. Still, I have a few of these conditions, and so I am wondering who decided to make May the awareness month for ALL OF THEM. Severe fatigue is a symptom for most of the conditions, so couldn’t awareness days and months be distributed more evenly throughout the year? So we can, you know, rest?
Anyway, in honor of Lyme Awareness Month, I bring you:
Some Lyme Myths
1. Myth: You have to be “outdoorsy” or like hiking to get Lyme disease.
My family keeps asking me why I got it, since I am not “outdoorsy.” I…
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Thank you so much for reblogging this! Lyme can definitely worsen or create chemical sensitivities, because it really compromises your immune system. Ugh!
Thank YOU for writing about it.
On December 22, 2011 my lover killed himself because he could not find relief from the increasingly bad symptoms of chronic lyme, had been denied disability benefits, had exhausted his savings, and the tinnitus, pain, fatigue and depression was major major. He said the tinnitus was like the “bugs” were screaming at him in his brain. It is an awful disease and there needs to be more awareness. In memory of Steven P. Shears, Eureka, California. I should say I couldn’t help, having chronic migraine/chemical intolerance and living 250 miles away at the time, powerless……
I’m so sorry Suki <3
I'm aware of quite a few people who are experiencing brutally difficult lives due to Lyme Disease.
Tragically, with most of the environmentally linked chronic illnesses, there is little to no medical or social support, especially when the going gets really tough.
Sadly, it takes a lot more people being affected before we see changes, but we are reaching the point now where politicians are starting to act and call for effective strategies to deal with Lyme Disease, at least in Canada, and I've seen a lot more news articles from the US too.
In the meantime, if anyone knows anyone who is suffering in a bad way, find a way to be a friend, see what they need, and find a way to help ease at least a little of that suffering. It's really not that difficult. The obstacles are primarily created by thoughts, not by anything solid.
Today I learned there are some plants that keep ticks away and I thought how interesting maybe if your body is invaded by lyme you too will have reactions like the ticks. I did a search and ended up on a news story About Hall from Hall and Oats… how he has lyme on that page I learned for the first time that lyme can cause reactions like the one I and other people with MCS have. ”
Learn more about the symptoms of Lyme disease.
Daryl Hall and John Oates (Photo courtesy of Mick Rock) What kind of reaction did you have after discovering your diagnosis?
Truthfully, my first reaction was relief, because I didn’t know any better. I remember thinking, ‘OK, now I know what I have; I have Lyme disease! Huh, that doesn’t sound so serious; now I just need to get rid of it.’ Let me tell you… I had no idea.
How did you proceed from there and when did you learn of the severity of the disease?
I was still under the impression that it wasn’t a big deal, but I wanted to take care of it right away. I went online to do research and then I went to see a doctor who was one of the best in his field at the time. He gave me the proper tests and explained to me exactly what having Lyme disease was all about, what it entailed and what my future was going to be like.
I have to be honest; it was all pretty depressing. During the time I was going to him, I’d see some of his patients in the waiting room and what I saw was just nightmarish. These were people who were crying, screaming, their hair was falling out, all sorts of stuff. What I was seeing in those people were the worst-case scenarios of this disease and it was scary.
Eventually that doctor moved into the field of research, so I got a new doctor and I’ve been with him ever since.
You’ve said that you went through the worst parts of the disease right after you were first diagnosed. How does it affect you today?
Sometimes it doesn’t affect me at all, but then it comes back in phases. Right now I’m in a phase where it sort of comes and goes with a little more regularity, and when I say that I mean that I get something called a herxheimer reaction, which is sort of a roving group of symptoms. It affects different people in different ways and it even affects me in different ways each time I get it.
To give an example, about a month ago I suddenly had such arthritic pains in my legs that I could hardly sleep. That lasted about a week and then it went away. After that I started getting heart palpitations, and then that, too, went away. And then I started getting headache-type feelings, but then that went away.
So all these symptoms, they rove; they move around. So if someone has symptoms and then they change or keep changing, it might be a good idea to get tested for Lyme disease because the symptoms mimic so many other things.
Yeah, I was just going to say that all of the things you just mentioned could be symptomatic of other things. Do you ever worry that any of these symptoms are reflective of an unrelated illness?
See, now that’s the weird thing about having this disease. I mean, how do you know? Or how do you not know? When someone has heart palpitations, only by going to a cardiologist would they know whether they have a bad heart or not. And I’ve been to a cardiologist and I know I don’t have a bad heart, and I also know that I’ve had heart palpitations before and I know it goes away.
So Lyme disease is definitely something you start learning to live with, and usually if a symptom mimics another symptom – no matter what it is – and then it moves, and it does something else, it’s usually not the real symptom of another thing; it usually has to do with a tick disease. (Photo courtesy of Mark Maglio)
This is fascinating. After you were first diagnosed, was there ever a time when you couldn’t perform?
Yeah, right after I was first diagnosed I had to cancel a tour. When it first hit me, it was so bad I had to go on medication right away and was really down. I tried really hard to work through it in the very beginning and I made it to a show out in Phoenix, but I collapsed. That’s when I knew I had to stop. So I did stop, and I had to cancel the tour and I was sort of out of commission for a couple of months and taking pretty heavy doses of various medications.
But then I was absolutely able to come back, and I would consider it maintained and under control now. As I said, I do have various flare-ups, but they don’t seem to be debilitating; these flare-ups aren’t something that I can’t live with onstage. I can handle it.
I, myself was raised in rural New Jersey, and because of the large deer population the public was warned about Lyme disease. But the messages were limited to basic prevention; we were just told to make sure we checked for ticks. After hearing details of the disease right now – much of it for the first time – I’m curious if you think there’s enough public awareness around the disease.
There is so much controversy and confusion around Lyme disease, and I think that anyone who has it – including myself, cannot understand why that is.
Because of the confusion and controversy, all kinds of theories come up; everything from governmental to insurance conspiracies, etc. I don’t truly know the answer, but I do think there may be some people who do have a vested interest in keeping it quiet. Lyme disease is not recognized by the Center for Disease Control as a chronic illness, and for anybody living with Lyme disease, the fact they don’t recognize it as such is almost a bad joke.
I don’t really understand why the CDC has not recognized it, and nobody has ever given me an answer that satisfies me as to why this has not really been addressed or recognized. Everyone who suffers from Lyme disease is sort of on their own.
Learn which areas are hotbeds for Lyme disease.
You mentioned something in an interview a few years ago about deer control in relation to how it could help control Lyme disease.
I talked about that on The Howard Stern Show, and before I talk about it here, I want to point out that someone might refute this story and reiterate that I’m just repeating the story I had heard.
OK, I heard that a few years ago people were coming down with Lyme disease left and right on Monhegan Island, in Maine, and that the state took the radical stance of taking control of the situation, and they did that by killing all the deer. And I heard that once they did that, it pretty much stopped the spread of the disease in that area.
I’m not sure if that’s true, but the point is that if you get rid of the deer, you can help get rid of the disease. See, ticks really need larger animals to complete their breeding cycle, and they can’t really do it as well on mice and chipmunks, so deer really are the biggest problem we have in terms of this disease in the United States. The average deer has about 1,000 ticks on them; they are literally riddled with ticks.
Whenever you’re on The Howard Stern Show, you and he make jokes about how much you hate deer because of your disease. Is there anything in the world you hate more than deer?
Actually, I don’t hate the poor deer! I feel sorry for the poor deer! I just hate it when they get close to me! [Laughs].
[Laughing]. OK, we’ll end on a different topic. I just saw you perform and was shocked to learn you are 65- years-old. You’ve aged amazingly well. How do you do it?
Well, thank you. But I’m telling you, it’s all in the genes! It just runs in the family. I just have great parents! My parents are very, very young people in their minds and their bodies, just like my siblings, and I inherited their genes. I seriously cannot take any credit for that.
But I do also think that one’s mental state has a lot to do with it, and I think being really active, doing the thing I do and being the kind of person that does the job that I do is good for me in terms of my physical activity. But what I do for a living also keeps my brain firing like a cannon!
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Daryl Hall with Rob Thomas (Photo courtesy of Mark Maglio)
Last question. On your Web series, Live From Daryl’s House, you’ve had an incredible roster of guest artists (The Doors, Rob Thomas, Todd Rundgren, etc.) come to your country house and perform with you. It makes viewers feel like they live next door and can just hang out on their porch and watch a free show. Who would be your dream guest?
To be honest, just about everybody I ask shows up! Seriously, everyone usually says ‘yes,’ but it’s just the logistics of getting everyone’s schedules on track. So I don’t really have a wish list. I know people want to come and play; it’s just the logistics.
But I think having Bob Dylan come over and play would be interesting, just because it would be weird and interesting all at the same time.
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Written by Jenny Stewart on November 28, 2011
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I then did a search on lyme and allergic type reactions…
February 22, 2020
Meat allergy caused by the bite of the lone star tick, Amblyomma americanum.
The tick’s saliva triggers immune response to a carbohydrate, alpha-gal, found in red meat. Although eating red meat is the most common allergic trigger to alpha-gal, ingredients found in everyday products such as dairy, gelatin, soap, cosmetics, lotions, household products, and medications can also cause an allergic reaction.*
Symptoms: Can develop 3-4 hours after exposure and include upset stomach, headaches, hives, rashes, swelling, shortness of breath, anaphylaxis.
The Tick-Borne Conditions United, http://www.tbcunited.org website can provide additional information for you about alpha-gal. NOTE: If you click on the link, you will have left the http://www.LymeDiseaseAssociation.org website. The information presented there is that of the Tick-Borne Conditions United.
This is all new to me… since I live in Canada our testing and treatment for lyme is poor at best. I now wonder if this is what is causing MCS… any thoughts or ideas.
Last year I went to Ottawa to see a MCS specialist that last one in the country that I know of. Now my memory is sketchy… and I could not get back for follow up visits so it did not go any place but I think she said I may have lyme… sorry my memory is poor…. too.
Has anyone else with MCS thought the cause could be related to a tick bite?
You can get a bit in a city park or any place…
What do you think of this Linda?
Hi Sandy, I just skimmed your comment, I’m all brained out now!
Some people with Lyme Disease definitely develop MCS and some people with MCS develop Lyme Disease…
I haven’t been up to digging deeply into it…
I do know that proper diagnosis still eludes most Canadians, as well as good treatment options.
more on lyme induced MCS one story goes a bit off track but it is there
I usually try to vet links, if wordpress lets them through, but I am not up to it now, so if Lymies can share the sources that have the best info, that would be great.