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10/09/2008 10:50 AM

They won't test her!

coleygirl
Posts: 11
New Member

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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10/09/2008 12:23 PM
fluffyluggage
fluffyluggage  
Posts: 4722
VIP Member
I'm an Advocate

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! Smile

Hope that will help.

*hugs*

Jen


10/09/2008 10:04 PM
cmany
cmany  
Posts: 6940
Group Leader
I'm an Advocate

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


10/10/2008 05:44 AM
Jenn56
Jenn56  
Posts: 449
Member

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

10/10/2008 06:43 AM
synergyman
synergyman  
Posts: 156
Member

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


10/14/2008 08:03 AM
tina.r
tina.r  
Posts: 189
Member

A large amount of Lymies never had the rash. Do not give up and change dr.!

10/14/2008 08:40 AM
Bonski
Bonski  
Posts: 176
Member

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


10/14/2008 09:53 PM
coleygirl
Posts: 11
New Member

cmany

I think u are right I am going to go in with her maybe my dad too.

Thanks for everyones support!


10/15/2008 07:14 AM
cmany
cmany  
Posts: 6940
Group Leader
I'm an Advocate

Good Luck and be strong -

Thoughts are with you

Christine!!

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