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coleygirl Posts: 11
New Member
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My sister has had a varrity of symptoms and was diagnosed with Rheumatiod arthritis which they are slowly discovering is caused by a bacteria. When she realized her symptoms matched with lyme disease coupled with the fact she had one in her hair years ago and that we have lived on the ocean, next to a creek, and on a river always with dogs: and the fact that I have had two bites one that was round about the with of a quarter and a purplish gray with a head in the middle and one that was a red circle same size but no head looked like ring worm she thought there was a huge possibility that she may have been misdiagnosed just as many children were misdiagnosed with juvenile RHUEMATIOD ARTHITIS and actually had lyme disease she went in to ask for a test and the doctor simply said u don't have lyme disease and refused to do the test because she saw no rash the doctor barely even looked at her she is now tring a home remedy taking large amounts of sea salt has this worked for anyone? What can we do to make her doctor do the test and stop tring to put her on steriods!
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fluffyluggage Posts: 4723
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My advice is to stop messing with the regular doc, PM the group leaders here and get a list of the LLMD's in the area where your sister lives, and have her see one of them. I'm sorry to sound so harsh, and I certainly don't mean to, but honestly, I'm fed up with regular docs who simply won't listen. Trying to get them to is like butting your head up against a brick wall and expecting it to start eventually moving. The definition of insanity is doing the same thing over and over again and expecting different results, so perhaps when these docs tell us we're crazy, CLINICALLY, they're correct. But we're not, we know what we're talking about, and we need to start seeing the people who can do something about it. Get her to an LLMD, they will know what to do, and they'll finally start listening to her!  Hope that will help. *hugs* Jen Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help. I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days.
Something has changed within me/Something is not the same/I'm through with playing by/The rules of someone else's game/Too late for second-guessing/Too late to go back to sleep/It's time to trust my instincts/Close my eyes and leap...I'm through accepting limits/Cuz someone says they're so/Some things I can not change/But till I try I'll never know/Too long I've been afraid of/Losing love I guess I lost/Well if that's love/It comes at much too high a cost/I'd sooner buy Defying Gravity/Kiss me good-bye I'm Defying Gravity/I think I'll try Defying Gravity/And you won't bring me down...
--Defying Gravity (Glee Cast version) |
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cmany Posts: 6197
Group Leader
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Coley - Simply dont take it. I know easier said then done. I have done this and have told others to do so... "If you are SO convinced that she doesnt have Lyme, put it in writing and sign your name" - they dont like that. Tell her and bring the facts with you when she sees her. "If in fact you are wrong doc - which is possible, and you put her on steriods, and I am right and she does have Lyme, you will be endangering her chances of getting better. Are you willing to take that risk?" This can be done in a way, where the doc may have a stroke of conscience - and wake up to the reality of the situation - but most are too arrogant and dont like being challenged. She has to take charge of this, this is her life. IF a doc chooses to be ignorant, then you dont need them. But if you have no choice but to see that one (mind you I drive 5 hours now to see my doc because of this kind of stuff) then stand firm and let them know. This is your life, and you will not allow a doc to screw things up because they choose to turn their backs on the actual facts about this disease. Would they? I know these tactics can be hard for some. And I know that some do not agree with my more aggressive side. But it is the only way have really seen results. Ask fluffers, she isnt getting too far being patient and nice and sweet. And ALWAYS go if you can with someone who will back you up...so if you can arrange it, go with her. If the doc seems to be dismissing her interject. Let the doc know, this stuff is real. To firm and assertive voices on this matter are better then one. I hope this can at some point help Christine [b]Group Leader Disclaimer[/b]
First and foremost - I am NOT a doctor, anything I share is based on experience & research. I strongly encourage you to discuss any and all information that I share with a health care provider.
************************
"I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road...
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now" Eminem Not Afraid |
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Jenn56 Posts: 449
Member
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Yeah me 2 i have to take 3 buses to see my docs,I had to change my md as well,He wouldnt test me it took amonth but he did,and i tested neg,ia this point i thought i was crazy to,But i new what i had at that point and went forward,And found a Dr,that would test me threw ignex,At that time my mom was still around and after months she couldnt take no more,and when her and my aunts got done with these doc they didnt stand a chance,Go in with a team,,lol,I no that sounds nuts ,BUT demand that test and Please make sure its done threw ignex..JENN |
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synergyman Posts: 156
Member
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I am responding on my husband's site. Whatever your sister does, don't take the steroid until she has tried the lyme treatment first. My husband saw 2 rhuematologists who kept him on prendisone and methotrexate for 2 years (2004-2006). The whole time we kept asking if it could be lyme (from the tick bite in 2001 which our MD only treated for 2 wk. with doxycycline). The more steroids he took, the worse his arthritis conditions were and the more steroids he'd be given.....unfortunatelly during this time, his immune system was essentially wiped out, allowing those opportunistic lyme spirochettes to have a party of their lifetime. In Dec of 2006 he was really struggling with the everyday "going thru the motions" and saying outloud he did not think he was going to live much longer. Now I've been with my husband for 23 years and he is the one of the most outgoing, energetic, optomistic people I know. For him to feel that way was very scarey for both of us. I started doing my own research and finally came across www.ILADS.org who helped us find his LLMD. He started seeing an LLMD in Feb 2007 and had made a remarkable recovery since then. He even wenting hunting this morning with our son (even though he knows he will basiscally be in bed or on a sofa the rest of the weekend). But, we are amazed he even feels like doing it. So keep up the crusade for your sister to get the lyme help she needs. And best of luck with recovery Suzie |
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tina.r Posts: 189
Member
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A large amount of Lymies never had the rash. Do not give up and change dr.! |
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Bonski Posts: 176
Member
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Coley, your sister is lucky to have someone like you taking care of her. Hopefully you can find a 'real' doctor that actually listens. That's probably your simplest solution. Bonita |
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coleygirl Posts: 11
New Member
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cmany I think u are right I am going to go in with her maybe my dad too. Thanks for everyones support! |
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cmany Posts: 6197
Group Leader
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Good Luck and be strong - Thoughts are with you Christine!! [b]Group Leader Disclaimer[/b]
First and foremost - I am NOT a doctor, anything I share is based on experience & research. I strongly encourage you to discuss any and all information that I share with a health care provider.
************************
"I'm not afraid to take a stand
Everybody come take my hand
We'll walk this road together, through the storm
Whatever weather, cold or warm
Just let you know that, you're not alone
Holla if you feel that you've been down the same road...
And I just can't keep living this way
So starting today, I'm breaking out of this cage
I'm standing up, Imma face my demons
I'm manning up, Imma hold my ground
I've had enough, now I'm so fed up
Time to put my life back together right now" Eminem Not Afraid |
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