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Furious and trying not to cry because i am so da.mn mad
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<blockquote data-quote="susiestar" data-source="post: 391237" data-attributes="member: 1233"><p>Jen, a lot of docs CAN run a lyme titer, but the test they run isn't worth squat. MOST docs don't agree with the Lyme Literate docs. the LL docs were the ones who first said lyme was real - a LONG time before any regular doctor admitted that ticks could give us anything but rocky mt spotted fever. LL docs are few and far between, and labs who run the most accurate and sensitive test that is needed are even rarer. MANY people spent decades suffering with what was called hysteria, anxiety/depression somatization, or many other things, even given diagnosis's like arthritis, neuralgia, and other things (diagnosis's of real diseases happened more often if you were male, sad but true), and given lots of therapies that did little or nothing positive. When these people were tested by LL labs and treated by LL docs, they got vastly better, in spite of most of the docs in the US telling them that they were peddling snake oil, not really helping, even that they were making things worse because patients stopped taking what the original docs prescribed. For someone who has just found a tick or a bull's eye rash, the doctor/er test available anywhere is a good idea and can be very effective. Ditto the treatment given. So if you find either of those things, by all means go to the doctor or ER, of course. It is far better than waiting, because then you need a LL doctor and lots of other treatments.</p><p> </p><p>I have seen this from the entomologist point of view. My town is home to a HUGE ag university that has giant areas labelled "Tick Farms" and a HUGE entomology division that studies all sorts of bugs, including ticks.I somehow wound up knowing a couple of the entomologists and the statisticians that helped them with their research, knowing them very very well. We discussed ticks and lyme several times when I was in high school (the 80's), and the bug guys were all very positive that lyme was real, that if not treated promptly with antibiotics then it would cause long term health problems. I think that in years to come, much of the treatment that LL docs use will become the standard because we will recognize the realities of lyme disease. </p><p> </p><p>A LONG time ago, over 20 yrs ago, fibro wasn't thought to be a diagnosis, or it was just a symptom of depression. The doctor who told you fibro was a symptom of depression because we ache when we get depressed might also, using that logic, tell you that arthritis is really a broken kneecap, because a broken kneecap swells up and that is what arthritis in the knee does. Same logic. NOT the same treatment, though some elements of the treatment may be the same. The doctor who told you that hasn't read or studied a single thing in the last 25 plus years. Cause it was about that long ago when it was in mainstream media that fibro might not have the origins known but it was a real disorder and NOT depression, even though some aspects and treatments were similar. I know the timeline because I watched a friend's mom get treated for it and get a whole lot better very shortly after. they took her off of many intense arthritis treatments taht made her sick, and tried managing the symptoms and doing what was then suggested for fibro and the change was amazing. She did NOT get healed, or fixed, or even mostly healthy, but she improved a whole lot which improved all of her life.</p><p> </p><p>I am going to take a few days off of this. Just too tired and sore to cope. I overdid it every day in the hospital, did not have enough of MY medications because I was due a refill but my rx's ahve to be handwritten each month and they were slow this month so I couldn't get to the pharmacy before we left. So I will do a few things today and catch up on sleep. Probably do soemthing tomorrow with the family, but will take it easy.</p><p> </p><p>Love to all.</p></blockquote><p></p>
[QUOTE="susiestar, post: 391237, member: 1233"] Jen, a lot of docs CAN run a lyme titer, but the test they run isn't worth squat. MOST docs don't agree with the Lyme Literate docs. the LL docs were the ones who first said lyme was real - a LONG time before any regular doctor admitted that ticks could give us anything but rocky mt spotted fever. LL docs are few and far between, and labs who run the most accurate and sensitive test that is needed are even rarer. MANY people spent decades suffering with what was called hysteria, anxiety/depression somatization, or many other things, even given diagnosis's like arthritis, neuralgia, and other things (diagnosis's of real diseases happened more often if you were male, sad but true), and given lots of therapies that did little or nothing positive. When these people were tested by LL labs and treated by LL docs, they got vastly better, in spite of most of the docs in the US telling them that they were peddling snake oil, not really helping, even that they were making things worse because patients stopped taking what the original docs prescribed. For someone who has just found a tick or a bull's eye rash, the doctor/er test available anywhere is a good idea and can be very effective. Ditto the treatment given. So if you find either of those things, by all means go to the doctor or ER, of course. It is far better than waiting, because then you need a LL doctor and lots of other treatments. I have seen this from the entomologist point of view. My town is home to a HUGE ag university that has giant areas labelled "Tick Farms" and a HUGE entomology division that studies all sorts of bugs, including ticks.I somehow wound up knowing a couple of the entomologists and the statisticians that helped them with their research, knowing them very very well. We discussed ticks and lyme several times when I was in high school (the 80's), and the bug guys were all very positive that lyme was real, that if not treated promptly with antibiotics then it would cause long term health problems. I think that in years to come, much of the treatment that LL docs use will become the standard because we will recognize the realities of lyme disease. A LONG time ago, over 20 yrs ago, fibro wasn't thought to be a diagnosis, or it was just a symptom of depression. The doctor who told you fibro was a symptom of depression because we ache when we get depressed might also, using that logic, tell you that arthritis is really a broken kneecap, because a broken kneecap swells up and that is what arthritis in the knee does. Same logic. NOT the same treatment, though some elements of the treatment may be the same. The doctor who told you that hasn't read or studied a single thing in the last 25 plus years. Cause it was about that long ago when it was in mainstream media that fibro might not have the origins known but it was a real disorder and NOT depression, even though some aspects and treatments were similar. I know the timeline because I watched a friend's mom get treated for it and get a whole lot better very shortly after. they took her off of many intense arthritis treatments taht made her sick, and tried managing the symptoms and doing what was then suggested for fibro and the change was amazing. She did NOT get healed, or fixed, or even mostly healthy, but she improved a whole lot which improved all of her life. I am going to take a few days off of this. Just too tired and sore to cope. I overdid it every day in the hospital, did not have enough of MY medications because I was due a refill but my rx's ahve to be handwritten each month and they were slow this month so I couldn't get to the pharmacy before we left. So I will do a few things today and catch up on sleep. Probably do soemthing tomorrow with the family, but will take it easy. Love to all. [/QUOTE]
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