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Post by alyeska on Aug 24, 2019 22:26:08 GMT
Have I posted this yet? This is so similar to my own experience except for the electric shock feelings and my treatment. Also, I never had a baby after my Lyme symptoms appeared though I did have miscarriages before that. This article really sums up so much. Forgive me if I’ve already shared this. Things have been crazy here lately. My brother read it and thought I needed to see it. www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/
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Post by Admin/ Traveler on Aug 25, 2019 17:17:35 GMT
No, this isn't something that you have posted before. It's being seen ahead of print online, for the Sept issue of "The Atlantic". I had another friend share it with me to be sure I saw it because it's one of the few very well written Lyme articles. I agree, it's very well written. I was unwittingly labeled as one of those Lyme loonies in my area, which is why I couldn't find a GP to help me even with non-Lyme issues (even though we all know they are mostly all tied together in long term {decades} Lyme patients). And, to top it all off, while Lyme was being 'discovered' in Conn in the mid 1970's - it was the year 1970 that marked a drastic downturn for my own health, sitting in California as a 7 year old child - never to be the same again. I was ahead of all of these people, but because I lived on the "wrong side' of the US, not one of my health issues was seriously considered as being caused by ticks/fleas/horseflies/deer flies - all of which are in high abundance around horses in California as well, which was where you would find me, any time I wasn't in school. But, don't let those maps fool you - they are completely inaccurate. Why? Because you simply cannot tabulate infections if they are not being reported. In 2007, I was finally seeing a LLMD - Dr. Edwin Masters, of "Masters Disease". We started treatments, and he did the obligatory testing regularly, and we were both very surprised when one day in 2008, my tests came back fully CDC positive (lending credence to treatment being able to bring a positive test for some) - for not only Lyme, but for RMSF, which I had symptoms of when I was 7 years old, and I would continue to have random high fevers of "unknown origin". For me, I remembered it all too well, the ice baths and all, so I knew it was a repeat of that year, but never had a name to put to it. But, try to find my positive test among the CDC positive cases listed? It's simply not there, as it was never reported. The state of Arkansas told me that since there simply was NO LYME in Arkansas, I must have gotten it in some other state. Right, that's because we know that the ticks that are infected with Lyme -or about to be from the white footed mouse, which harbors it - know not to cross OUR state lines, right??? And if they are on the wrong side of that state line and end up infected, those special ticks KNOW to remove themselves to the other side of the state line. Right? It totally escapes me how the CDC is not the laughing stock of all time. SERIOUSLY!! Just how ignorant can one person be??? But, I couldn't disagree, as I not only was traveling around the US with my husband for his work at that time, but I came from California sick as a dog. In other words, I likely brought those infections with me from California - but of course, Calif didn't want to claim me either. LOL. Now, I'm no one special, so if they are refusing to count my FULLY CDC POSITIVE test results, just how many others are they refusing to count?? I'd be willing to bet that if we could find a way to find those people, their sheer numbers would shock anyone. I meet people every single time I go out that believe they have Lyme, yet their doctors refuse to test them for it. So, we are in the middle of a pandemic (make no doubt about it, this IS world wide), and still we sit here, without adequate testing, without adequate studies, without adequate treatments. This has been a 40 year fight so far - just how much longer does this need to go on without getting the attention of those that have the power to do something about it?
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Post by alyeska on Sept 9, 2019 21:19:57 GMT
Yeah, I think you’re right about everything, as you know. Perhaps millions of people are infected but either have been misdiagnosed or haven’t had a symptom yet because their immune systems are fighting it off. I feel so sorry for all of those people who will go through something traumatic and then get hit with tons of symptoms like I did. My mother’s death really did a number on me. I just pray they have open minded, Lyme educated doctors to tend to them. The word is definitely getting out! Not as quickly as I’d like, but at least I haven’t had to go through the “Lyme looney” stuff like you have. That’s heartbreaking.
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