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Lyme199821 Posts: 9
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I was diagnosed with late stage Lyme disease when I was about 10 years old. I have always had aches and pains in my joints as a child which i attributed to being a child, as I grew older I became more cautious in life to prevent the pain. Eventually this led to opiate pain medicine increase my functioning, and quality of life. I am a very slender bodied male, with a high metabolism, and eventually an opioid tolerance. I was on opiates and then they were taken away for a month due to lack of treatment and the ability to pay for care, and transportation. I have broke my right thumb, right tibia, and right wrist. This was also the side (right side) that I experience paralysis in when my lyme intialy went untreated. I had an IV Picc line placed in for 14 days...don't recall med used...but treatment was considered successful and i regained movement in my arm is where most symptoms occurred: weakness, pain, and numbness, and lack of mobility and strength. My whole body is now fatigued, aches, and pains; and my pain medicine helps motivate me to overcome it and be a productive member in society. I was then referred to a treatment facility and was put on Suboxone for opiate addiction, and i still had pain, by my tolerance was dealt with, I broke my ankle in Feburary 2011, and since i have been on Oxycodone w/o Tylenol (due to overuse of acetaminophen, and NSAIDS...GI problems) they began a taper to totally remove opiates from my medicine regimen, and now I am being referred to Pain Management, any suggestions on doctors who understand LYME PAIN?>?? I am going to the UW-Pain Managment....at the UW-Hospital...I have Physicians Plus Insurance...Any IDEAS. I am suffering every day that they have me on this inadequate dose of medicine...I am only taking 5mg Oxycodone every 4hrs....Maximum of 5 Tabs DAILY...I was on 60mg Morphine 2x Daily & Xanax & Valium...another regimen was 10/325 Hydrocodone w/ APAP 3x Daily...10mg Oxycodone every 6 Hours....I am on 25mg Oxycodone daily...I am used to managing my base line pain at around 60mg Daily...and with breakthrough or acute pain...a PRN added to my normal regimen...I need a doctor who understands and also understands lyme disease and how to treat the pain best and provide adequate comfort for me as his patient and insure my capability to work, the little I am able, and help treat the Lyme if possible and assist with my disability claim. Thanks, Lyme199821 |
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waxby  Posts: 4132
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~~~Hello Lyme199821, ~~~Only 14 days iv treatment? Big mistake. ~~~Treatment must remain at least 2 months past no symptoms even if that takes years. ~~~You must see a LLDr,Lyme Literate Dr. A non-LLDr will only destroy your life. ~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~lovey-dovey~~~Mitchell ~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell |
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GWB Posts: 799
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Ditto what waxby said. See a LLMD asap! Gary |
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Lyme199821 Posts: 9
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I had a western blot done the other week the IgG had 4 bands present and was considered negative, and the IgM had one positive one equivocal, so my test for that was equivocal any ideas what that means???? My family medicine docs say that means I am fine....i had one done prior and i believe it was the same...the IGG & IGM may switcfhed...oops/....I can check thought |
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waxby Posts: 4132
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~~~Hello lyme 199821, ~~~re your " the IgG had 4 bands present and was considered negative, and the IgM had one positive one equivocal, so my test for that was equivocal any ideas what that means???? My family medicine docs say that means I am fine" and that means this dr is an educated shmuck and will ruin you.You are positive for lyme.Fire him.Find a lldr. ~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~lovey-dovey~~~Mitchell ~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell |
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inkyblck  Posts: 446
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L199821, welcome ~ you are now part of the big family here  My family medicine docs say that means I am fine.... wow ~ you are "fine" yet they will perscribe Oxycodone, morphine, Xanax & Valium, etc ??? This is NOT fine !!! It is not acceptable for you to feel this way ... Not only should you find another doctor, but IMHO, a doctor who does this should be arrested ... You have lyme ~ you were undertreated ~ and most likely, you probably have a bunch of other tick-related infections ... The GOOD news is that once you find a good doc and get on a treatment program, you WILL recover ... Please please find a good doctor ... I know this from experience ... I wasted so much time w/ dead-end docs .... but once I got on the right track, I started feeling beeter much faster ... It is impossible to read too much and to over-educate yourself .... Everyone here will help, so please ask as many questions as you want ... You can do this ~ we just need to get you on the right track .... I am NOT a "lymie" ~ I loathe that term ... I will not be defined by the vile bacteria that will very soon be out of my system ~ If you consider yourself a "lymie" right now, what will you have left when you rid yourself of the bacteria ~ nothing ??? ... Don't be a "lymie", be YOURSELF and fight it ...
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And by the torrent on the banks thereof on both sides shall grow all trees that bear fruit: their leaf shall not fall off, and their fruit shall not fail: every month shall they bring forth firstfruits, because the waters thereof shall issue out of the sanctuary:and the fruits thereof shall be for food, and the leaves thereof for medicine. ~ Ezekiel 47:12 |
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Bettyg Posts: 26669
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lyme, please edit your entire post to 1-2 sentences MAX; hit enter twice after each short sentence until you are done with your complete post, plus your reply to someone also. we neuro lyme folks can't comprehend or read as is. thank you for helping us help you hugs bettyg, iowa leader BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader
NOTE: I DO "NOT" USE CHAT thanks!
**************************************
NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-
Any information provided should not be used to take the place of advice from your personal physician or other professional.
Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.
43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more. |
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Lyme199821 Posts: 9
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Is it common for lyme patients to be on pain medicine and if so what kinds or what ones??? |
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Bettyg Posts: 26669
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lyme, please EDIT your top post which started this link here to:1-2 sentences MAX; hit enter twice after each short paragraph, and keep doing this until you get it down. if you have questions/important info on it, bold it so we don't miss this in your long post ok. we wantto be able to help youas much as possible, but severely neurolyme folks like me, 41+ yrs, CAN'T read or comprehend your post at all. thanks for helping us help YOU  bettyg, iowa leader BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader
NOTE: I DO "NOT" USE CHAT thanks!
**************************************
NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-
Any information provided should not be used to take the place of advice from your personal physician or other professional.
Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.
43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more. |
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"What MD Junction means to me is a place where i can feel like im not alone. As someone with something as rare as hydrocephalus, it feels like im the only one in the world with it. When i came to MD, its like everyone has it. It doesnt feel like im alone. And that people need to hold up a sign to say what i have, because people know. And they understand. I can get questions answered from people who have been through it rather than from doctors or people who only can tell you from a physical standpoint. THat is what MD junction means to me." (tomboykimi)
