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beauty4ashes

Therapy is expensive, poppin bubble wrap is cheap!

Just some insight into my life...


There is NO Lyme in Oregon!! (copied from some of my recent posts)

Oct 31 2008

Got your attention, didn't I?

 

No, I'm not naive on this subject,.. my doctoris!! And I guess I was naive for thinking my doctor would respond better than this, but that is EXACTLY what they told me this morning.

 

They called to tell me not to bother coming in today because "There is NO Lyme in Oregon".

 

I told them, "I have all the symptoms of Lyme". She wanted to know if I "have been on the east coast recently?"... I told her "no, but that means nothing", she says, "Lyme doesn't exist in Oregon". I said, "Yes, it does, and I KNOW people here who have it". She asked me if they had been to the east coast. "no",.. "Then they don't really have Lyme".

 

I told her I have at least 80% of all the symptoms associated to Lyme INCLUDING that I had the EM rash, a bull's eye, a little over 3 years ago, right before I got so sick, and have been ever since. She wanted to know if I still have the rash!! "No, of course not, it's been three years."... Like, the rash STAYS on you the whole time!!

 

I told her that there is medical documentation showing Lyme is in fact in every state. I was told again, "Lyme is NOT in Oregon". I said, "ticks do not know boundaries, they cross state lines, they attach to birds, birds fly everywhere, the ticks fall off... deer are everywhere."... Agan, "Lyme is NOT in Oregon."... ??!!

 

She told me if I really feel the need, then they will do the titer test. I said, "that's not a reliable test". She agreed, "no, it's not a reliable test". "then why do you use it?", I asked. "That's what we use, it's protocol.... EVERY doctor's office & lab in the country uses the titer first.", she says. I said, "well, I'll do the test, but I also want my labs ran through Igenex, which is a tick-borne diseases specialty lab, and "I WILL PAY FOR IT". She told me, "the is NO SUCH THING thing as a lab that specializes in Lyme Disease"...??!!

 

She said, if I want to do that I can, but they will not cover it. I said again, "I'll pay for it, I just need you to sign the form"........... they won't do it!

 

They said, after I get the titer results back, however I choose to proceed will be up to me, but they do not treat Lyme unless the titer comes back positive, and even then they feel whether negative or positive that the test is unreliable, and once again I was told, "Lyme is NOT in Oregon"....!!!!!

 

Well, poopoo on you, docs, I'm going to an LLMD!!

 

I know, it's a bad pun, but I am just so "ticked" right now, I could spit nails!! I know this doesn't come as a shock to anybody, and I knew to expect it too, but I did not expect them to be SO abrupt with the whole 'Lyme isn't in Oregon,.. PERIOD' attitude, and to CANCEL my appointment on me!! They won't even see me!!

I looked up info on my insurance this morning before they had even called. I suppose I cannot say 'who', but they are a one that are also their own doctors & hospitals (hint-hint), and I found info that said they are in fact one of the worst when it comes to acknowledging or treating LD. I thought "oh, great! NOT",.. and I kid you not, 10-15 minutes later, the phone rang with the whole above saga taking place.

 

Oooh, and get this, in the same article I took note that it was mentioned that my particular ins./doctors also have some sort of policy in place that protects them from malpractice suits so that if they misdiagnose or refuse to treat, there is NOTHING you can do about it. I didn't know that could even be legal, but apparently they can. Makes me sick to my stomach!!

Oh, one more thing.... I swear, my blood is boiling, too,.. can't seem to get my mind off it & on other important things.

 

So, I even told them about how bad my cognitive skills have gotten, I have major long & short term memory loss, I make spelling mistakes ALL the time that I never used to, I type deslexic a LOT now, I have intense pressure in my head, and I make mistakes on things so much that I had to COMPLETELY remove myself from our business..... these are not things associated with Fibromyalgia!!! SOMEthing else is going on here, and has been EVER SINCE I HAD THAT BULL'S EYE RASH, and I believe it is Lyme..........

but, ya know,... I'm just some stupid layman who thinks she knows it all, right??

 

I was told, if I wanted to come in for something other than Lyme, then I could still come to my appointment,.. otherwise not to come.

 

I don't even want to go back there again,.. ever,.. for ANYthing now.

Persoanlly, I am thinking ignorancy & arrogance are even bigger epidemics than Lyme Disease,... and that's saying a lot!

I am SO thankful I found a good LLMD only an hour away. He's also a naturpath which appeals to me. I emailed him this morning after my fiasco, and explained everything to him,... not EVERYthing, but the key points for starters. He emailed me back, and wants to see me as soon as I can swing it. I told him I need to wait until payday next week. BUT,.. He said just based on the history I gave him it "strongly suggests borrelia"... he also included that "we won't be able to know for sure until we do the appropriate testing", and then added that he only tests for Lyme through Igenex. He gave me a lot of info on the fees for all the tests, and all the additional testing he would want to add if I come back positive, or even suggestive, plus for co-infections and all that. Also the CR57 or whatever that one was as a baseline for where I'm at and then attempting to gauge progress during treatment. He also added that even if it doesn't turn out Lyme, but something else, he can still help me (I mentioned how fed up I am with the conventional treatments for my "severe FMS" dx).

 

The info on his website sounds great, and his response was, too. I'm hoping I can get in Tuesday, but I may need to wait until the following Tuesday (he said a Tues or Wed was best so Igenex would have my labs by or before Thurs). My kids have their drama rehearsals Mon & Wed the next two weeks before their plays so we can't miss any... If I have to wait another week,.. it's not like I haven't already waited this long. One more week probably isn't going to do that much more damage................. Glad to have some positive news though after that dramatic saga this morning!

 

Sorry for the length again, guys!



Previous diary posts by beauty4ashes:
Comments (2)Add Comment
written by fluffyluggage, November 02, 2008
OMG! What a load. I can't even imagine, but I can tell you that it sounds so much like what I've been going thru. Ignorance must be bliss, but it's a real pity, because with all the things we've learned, WE could help our doctors help other patients. I persisted with a doctor I knew in my heart really wasn't good enough for me, but I really thought that my giving him all the research and trying to get him to help me, I'd be getting him to help OTHER patients. I was so wrong!

You sound SO much like me. I'm so glad we're going to be getting to know each other! I agree with so much of what you said. I can't wait to hear more! smilies/smiley.gif I'm sure you will have great luck with the new LLMD, and I can't wait to see what happens once you see him. Please keep me updated on it! smilies/cheesy.gif Jen
written by beauty4ashes, November 02, 2008
Isn't that just the absolute truth?? I cannot tell you how many times that I have fought & argued with doctors over the years about various things going on with me, or my kids,.. and have gotten either brushed off, looked at like I had NO idea what I was talking about, or they got MAD at me for trying to "help them do their job"....... just for researching and asking questions!

There have been things I have INSISTED were wrong, or the root of the problem, and have been treated like I was crazy,... and then later on, it ends up I was right! When I was pregnant with my oldest DD and in my third trimester, I could hear & feel a "popping" when she moved one of her legs. I tried & tried to convince my OBGYN, but she wouldn't hear of it, said there was no way I could know something like that inutero... But, when my daughter was born with a "dislocating hip", well,.. ya know, I became the talk of the medical board! She pulled plenty of other things like that on me,.. never believed me about ANYthing. The last straw was with my middle DD. I just knew she was allergic to something in my breastmilk, but oooooh no, that is rare, it can't happen. I tried to tell her "rare & not at all" are two different things,.. suppose we are falling into that 'rare' category?? She wouldn't listen, so took it into my own hands,... and long story a little shorter, I was right! I still didn't know 'what' the allergy was, but I kept questioning & being told 'no, that's not possible'..... it took me 8 years to prove I was RIGHT. My daughter is allergic to casein! Oh, there are countless stories where I have known what the MDs didn't, and had to fight to get it recognized. That, or take it into my own hands to see results. I have never acted higher-than-mighty to the doctors,.. I've just simply pleaded with them to consider certain things, especially because I DO research things so much. Unfortunately, not too many doctors take kindly to that.

IHMO, a doctor who is not "open" to suggestion, or ideas, is not a very good physician. A good doctor is ALWAYS LEARNING,.. even if from their patients, if not ESPECIALLY from their patients!

They need to realize that people are not cardboard cutouts or cookie cutter images out of their medschool textbooks!!


I still can't get over your doctor's office SPYING on ou here on MDJ!!

Well, I agree.... I think you & I are going to become fantastic friends! (((HUGS)))

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