|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!
Ping, Ping, Ping!
Sick & Tired of Being Sick & Tired! (My Ranting)
Neurofibromatosis (NF) Links
Once Bitten, Twice Shy (Lyme Disease)
And the Caged Bird Sings (Abuse & Recovery)
Little Girl Lost (My life as a childhood sexual ab...
Stained Glass Window (Surviving life... Bring it o...
Members who read this post also read:
Why does everything have to be so damned hard?
what I've dealt with so far...
It all came flooding back!
All over the place