Sorry but i must get real today. Topic is LYME DISEASE. I need to be a voice for people who are too weak to speak up; so Im going to indulge in venting today. For those who could care less go fly a kite to the moon. I lost my job after a tick bite in 07. Yes a very very good job that I worked hard at for 20 years. I left it in 02 to become independent consultant but I stayed at same job as consultant till 07 when I fell too ill to continue working and the company i worked for dropped me. Reason i left in 02 was a 3month long illness during which I fought mysterious septic infection that my body almost succumbed to bcz something is awry in my immune system. Spent a lot of time at my grandmothers cabin in NY State as a kid. Been sick with fever, vertigo, migraines and muscle & joint aches my entire life. Was diagnosed with dermatomyositis and possible scleroderma 3 1/2 years ago but drs claim it is being well managed ATM and thus why am I still sick. After my tick bite in 07 I was diagnosed with seizure disorder, autonomous neuropathy, orthostatic hypotension, autoimmune disorders & much more. These R all the vague symptoms of chronic lyme. Was passing out all the time. Clients were driving me to ER. Couldnt make it across street w/o heartrate soaring & dropping & blood pressure plummeting to 50/35. Got the picture? Bitten by another tick last April walking thru tall grass in neighbors yard. Became very ill a week or two later. Since then white matter brain lesions are increasing in number. I cant even remember how to get to wal mart on some days. So you see pics of me looking pretty darn good on FB. Please know that is on a good day. I do have them once in a while. In order to take a vacay I cannot indulge in any activity that stresses my immune system prior to taking the vacation. Only if you wear my shoes would you understand why Im so rigid about my lifestyle. If you felt the pounding headaches & vertigo that ensues after a glass of wine or eating gluten youd know why I cant indulge too much. Why the rant today? Well I came home from vacay and overdid things & Im sick again. It w/b improper to write the gory details on FB but I am self treating with antibiotic to get the Lyme in check. Fortunately I have one more bottle for one more episode. Then Im SOL. Why am I SOL? Bcz chronic Lyme according to the CDC doesnt exist. So even if my dr prescribes doxycycline my insurance company wont pay for it. In order to eradicate my Lyme I will have to pay thousands of dollars to see a Lyme specialist who hides from the IDSA (infectious disease society of America) who wrote the guidelines that practitioners must follow or they get their licenses taken away; and so insurance companies follow those same guidelines. I live in an area where Lyme is endemic. My neighbor is nothing but a shell of what she used to be. A coworker who is a former nurse gave up her career bcz of Lyme. She did get better after seeing a lyme specialist but she still cant work. Her 1st specialist died of Lyme. Another friend who was a member of MENSA was labeled crazy for ten years till they biopsied fluid from his knee and found Lyme. He is also a shell of a once vibrant highly intelligent person. His antibodies for lyme & coinfections were always negative. I cant get into how flawed the tests R for Lyme disease. Ill save that for another day. I will tell you that I cannot get a dr to treat me with antibiotic bcz they must follow CDC guidelines that chronic Lyme doesnt exist. It is insane. I know many people like me that R exhibiting symptoms but cant get treatment. My husband is one of them. I pray he can continue working bcz I sure as hell cant. When i tell you he gets weak & fatigued im not lying. He has been treated for tick borne infections. Drs thought he was crazy too in 08 when he came down with acute Ehrlichiosis & was turning septic. Luckily an infectious disease dr recognized he had ehrlichiosis & treated him but for only 14 days! He too must follow the inadequate guidelines! Thankfully his fatigue & weakness go away after rest so when i decline an invitation bcz my husband works 3 jobs & has to rest on his day off, if you dont like it go pound salt. Reason im writing this now is bcz many of my friends & loved ones think its all a lie or that Im looking for attention. If you think that you better hope you never get Lyme. I had melanoma and I was treated swiftly and thoroughly at stage 1 by the medical profession. Why should I not be treated for Lyme? Why does Lyme treatment end after 14-30 days? Chemo does not end after one month? why isnt lyme being taken seriously by the CDC? You should be very very concerned bcz right in your backyard awaits millions of ticks infected with lyme & coinfections that can debilitate you in just a few months. All the MRIs and scans which cost 5 to ten grand each that my insurance company paid for couldve been prevented if I was treated with antibiotics in the first place! If you think Im exaggerating just ask my husband. He lives with me. Hes the most honest person youll ever meet. He knows! Reason Im putting my personal bz on FB is to: 1. raise awareness; 2. to help people who dont even know they have it but know something is very wrong; 3. to let those of you know who think Im faking or refresh your memory for your case of amnesia when it comes to my medical history. Ever notice how compassionate I am and how I listen intently when you all get sick? What my suffering has taught me is kindness & compassion as well as who my real friends are. All Im asking for is reciprocity and for people with Lyme (or anybody w/ chronic illness) to be treated with dignity not like theyre crazy and please dont tell them they need to get a job or get out of the house more. If you dont believe me watch the documentary under your skin its on my timeline. If you care enough to have me in your life you will read this post in its entirety & watch the movie. IT COULD SAVE YOUR LIFE OR YOUR LOVED ONES FROM THIS HORRID DISEASE. Get your ticks checked. Be your own advocate. Demand doxycycline for at least 30 days after youve been bitten. If it gets delayed the more difficult it will become to treat. Thx for letting me share & I apologize for my accusatory tone but i had to get real today. The truth hurts but it can save your life.
Posted on: Thu, 25 Sep 2014 14:02:44 +0000
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