posted
Okay, so I've seen a million different specialists since March. I went to a Neurologist before I knew I had Lyme, trying to find out where my neuro pain was coming from.
That was the scariest appt for me. She seemed sympathetic at the time and I thought she was nice.
I kept telling her that I felt like I was being stabbed in the neck with hot knifes and I felt like my skin and muscles in my neck were on fire...with tears and tears streaming down my face.
I begged her, crying, "Please help me, please"
She said (all too familiarly), sounds like anxiety to me.
I said, NO. I'm not anxious. Everyone keeps telling me that and the only reason I cry is because I'm so frustrated and desperate, and in pain...and no one will help me.
So, she gave me yet another rx for a low dose of xanax, because she insisted it was anxiety.
I told her I would take the xanax but I insisted on an MRI of my neck and brain. She obliged.
Ok, fast forward a few months, I got the weird bull's eye rash I talked about before (not from the original bite) while on doxy.
I ran up there to show it to her and to my Primary Care. She ordered another Western Blot.
It came back CDC positive. I was shocked. She insisted I got to a specific ID doc that ONLY takes Medicaid and Medicare and for me to go there, I'd have to pay out of pocket, $300 a visit.
Heck, I can go see an LLMD for a few more hundred than that, NO.
So the other day I called her and I asked for another referral to another ID doc that I found in town that takes my insurance and I asked if I could try Neurontin, so I wouldn't have to take so much xanax (because embarrassing enough as it is, I have to take way too much to get any relief - tolerance).
I explained to her the xanax worked on my neuro pain because apparently this nasty bacteria has spread to my brain and the xanax works on that exact part of my brain.
She said if I take Xanax and it goes away, that proves it is just anxiety and not Lyme causing my pain.
I told her that I've read articles about Neuropathic pain and it actually listed those drugs for pain relief.
Then the screaming started, GOD, how I wish I could have a tape recorder ready because she LET ME HAVE IT.
She started SCREAMING AT ME that she has a billion different degrees and I don't, to never challenge her, that I don't know about anything regarding this, etc.
Then she YELLS - "THIS CONVERSATION IS OVER!!!!!"
And she hung up on me. No goodbye, nothing. Just "click".
So, then I sat there and steamed. I called back, of course they never answer their phone, it always goes to voice mail.
I left her a message and told her how sad it was that she couldn't accept that her poor little sick patient knew more than her about this. And how I knew there was Lyme in FL and she still insists I'm lying about not traveling to the N.E., lol.
I told her to get on the internet and start reeducating herself and her medical expertise up to speed because she's really behind. lol.
It felt good to get it off my chest because the ***** hung up on me and I didn't get to speak my mind.
Well, then the next day...lol....you're gonna love this...
The office manager calls me at 7am (they don't open til 9) to tell me (in these words exactly, lol) this : "Ms. Vanessa, I'm calling to inform you that you are FIRED from this practice."
UMMMMMM, lol@ that. I said, "Oh, I wasn't aware I was on your payroll. She said, "I'm telling you that you are fired as a patient here." I said, Honey, I fired you guys a long time ago, hence not making any appts with you for the past month. I said "You guys are fired". I fire you."
She said "Well, we have to send you our official letter stating you have been fired from our practice"
I said, "Don't waste your paper because if ya do send me a piece of crap letter, I'll send you one back telling you are fired and I've already posted on every website on the internet about what bad service I get from you guys."
UGHHHHHHHHHHHHHHHH. I can't buy enough manila envelopes for these tards. I can't buy enough stamps, ink for my printer, paper, to educate these IDIOTS who know NOTHING about my situation.
It's kinda funny but it also makes me so mad. This is like a drama/scary movie/suspense movie/comedy all wrapped up into one. And I get to be the lead character in it.
Can I just be an extra instead of the lead, please? lol Idiots...
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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posted
I hate that you had to go through all of that but I LOVE that you gave it right back to her and left her with something to think about! Neurologists are so arrogant and they are NOT about to admit that they are wrong or *gasp* that their patient knew more than they did. They know NOTHING about Lyme.
I ended up seeing 4 different neurologists since 10/07, and #4 was telling me that I had MS even though I had a CDC positive test for lyme(he didn't even respond about the test, like I never even said it)--so strange.
#1 got so pi$$ed when I handed him the test and told him that I FINALLY knew what was wrong with me. He just kept looking down at it and started raising his voice about how NONE of the tests are reliable, "you don't have lyme", "you don't want lyme,,,from what I hear it is bad", "a lot of people out there think they have lyme and they don't"...as he is saying all of this he is waving my test around in his hands. They just seem to really get flustered. I think I had like 10 bands (total) come back positive and 3 or so IND...how could all that be a false positive...no answer. Honestly, they are a waste of our time anyway.
That "deal" about you going to some ID that you would have to pay cash for almost sounds like some kind of kick-back for her??? Why would she refer you to someone that only took insurance that you don't have??hmmmmm
all I can say is HAHAHAHAHAHAHAHA--you told her! (sorry, I needed a laugh)
posted
You know, I heard about a doctor like this, a real "no, Lyme doesn't exist beyond three weeks of doxy... blah, blah... " kind of guy.
And then, you know what? His son got bitten. Well, HE KEPT HIS SON ON ANTIBIOTICS FOR SIX MONTHS!!!!
So, it just goes to prove that the information, however slowly, is getting into the doctors' minds. We will see a change in the medical community; I am convinced of this.
Great work speaking your mind, Nessa.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well honey, i got practically thrown out of a doctor's office. he yelled for his nurse and said "get her out of here, now." plus he told me to "shut up".....
oh, the arrogance of some doctors. we're sick but we're not stupid, we understand english and want help.
this topic is always a sore one for me.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I love strong women like yourself who can tell these ***** off. Sadly, I don't think I'm what you'd call a strong woman, I'm more meek and I don't think I'd have the strength to tell them off like you did. But I LOVE that you did it. They deserved it all, sadly. I think they were scared of how much you knew, that is why they got rid of you as a patient. Most doctors don't like patients who know more than they do (even in certain aspects) or at least "show" that they know more.
I told my husband this story too and he said he would have said, "Go ahead and send that crappy letter, but I'd send you one back from my lawyer for professional abuse..." lol. Probably wouldn't get far with that, but just wanted to tell you I told my husband your story and he couldn't believe them either.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
While it might feel "good" at the time of the whole incident, remember, REMEMBER, that this doc has your "life" in his/her hands - - - and that is, your medical records-----do you have them from her office, yet?
If you don't you may have an extremely hard time getting them, or you might get them, with/without editing done to the doctors notes. This has come up before, where this similar circumstance has occurred, and the doctor is obviously an a$$. You need to get your records, asap!
If you are within distance, you might want to just "show up" at the office, tell them you will WAIT for your records to be copied, and see if they'll do that.
Otherwise, they play the game, telling you "they're in the mail", or "tell us which doctor you want them sent to", or WE LOST THEM, or some other such scary nonsense.
Now, follow me here, but without your medical records, some of which sound like your test results might be in there, you will be up sh*t creek.
You might get gouged up the rear with "fees" to either copy and/or send your records, as well, which is legal these days, unfortunately. You probably signed something when you first went to this doc, saying you understand that there will be a fee for records copied/given.
Look into it. I'd do it sooner, rather than later, when you may need those records for the next doc, or insurance purposes!
Oh, and this doc could also label you with some very bad stuff, as a "patient". Look for it, usually it's just written into the regular doctors notes.
Be careful! Julie
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
xanax calms the CNS, many lymies see relief from their symptoms, heck many normal people feel great on it.
gotta run for now, hang in there.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
julie, you brought up a point which i have apparently forgotten.
i was seeing this pcp years ago and apparently i had lyme then. well he thought i was some kind of nut.
i applied to have my life insurance increased and had to take a physical which i passed. GET THIS!! THEY DENIED IT BECAUSE HE SAID I WAS SUICIDAL AND A HYPOCHRONDRIAC!!!
i pleaded, i begged, i screamed and yelled at them. they would not reinstate my life insurance and i lost it.
i called the doctor's office and couldn't get a copy of my records. "it's in the mail" "we'll copy it for you", etc., i heard tons of excuses and i threatened them with lawyers, etc.
the damage was done and i could not undo it.
so yep, better take note and be careful because they can really screw you in the end.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
As hard as it is to hear, from many of us who have been through this, we have found that if we think in terms of auto mechanics it helps.
We are a volvo (or BMW) or some very complex car or space ship.
We cannot expect a mechanic for a lawn mower to fix our complex system. And we have to honor their right to stick to the lawn mover business.
And we have to find our "mechanics' from our own underground network.
===
We have only so much energy and spikes in cortisol are extremely damaging to our health. So, the best course is to muster up as much respect (for ourselves and others) as we can and move on, focusing on "how else?" "Where else?" "Who else?"
If we fire the canons, they fire back at the good doctors and then the good doctors are under more stress than ever and they will close their doors.
As we get better - or along the way - a key book - or a few key articles offered in the spirit of learning might be a way to open a window that has slammed shut.
I, too, got a "fired" letter from a doctor (Yale-trained) after a car horn alarm got stuck "on" for 5 mintues outside his office - triggering a seizure exactly correlating to the sound - and rhythm - of the horn. He said he did not believe in lyme and he'd never seen a seizure like that so he "fired" me.
I wanted to fight - and did. But it set me back a long ways and was part of what got my chart blackened.
It took years to come to some sort of terms with this.
When we have only so much energy it really helps to see who the doctors are that have helped others at the local lyme support groups. We can't take a chance of going to just anyone anymore. References, sadly - or thankfully - must come from others who have gone before.
After we get better, we will be stronger and better able to be a voice for change. Right now, if we have cortisol spikes, our health is at risk. We are in triage mode and have to do whatever we can to keep our cortisol from spiking. Treating the infections will help that tremendously.
It's not right to be treated this way but I sure don't have the army within my body to fight without it destroying myself in the process.
And, we can continue to hope the word gets around in the medical world that lyme / TBD education is a sub-specialty. Many people are working on that.
For now, we know and we can't expect expert treatment from those who have not had the training and education.
I do hope your local support group has some good suggestions for you while you wait to see the LLMD.
The book: "They Lyme Disease Solution" by Singleton is a very good book if you can get it before your LLMD appointment. There are many suggestions in there for things we can do on our own, too.
I have found Source Naturals "Night Rest" to help reduce pain as it helps with better sleep. The gluten-free diet also has been a big help in helping to reduce pain. The book above has more ideas, too.
-
[ 14. July 2008, 06:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
yep Randibear---I've seen this from both sides-when I worked as a nurse, and as a patient (but not done to me).
If you're just cruising through doctors, in search of a possible LL regular doc, it may not concern you as much, but if you're trying to get insurance coverage for some doctors appts, then this is where this warning plays the biggest, and most damaging, part.
Insurance companies are driving the boat, as we know. Those of us not fortunate enough to private pay everything, must keep this uppermost in our minds---if not for the present, then for th future.
I had not thought of life insurance, but I'm willing to bet the bank that they have their finger in this pie, too.
You cannot change what your doctor (any doctor, even LLMD's) writes in your chart/medical record. It is permanent, and it is THE DOCTOR'S OPINION of you! Your test results are not an opinion, but your doctor, being human, is viewing you subjectively, whether you like it or not.
As we have heard many times, and seen today in this thread, when the doc's blow, you're gonna go. They are in charge, even though we are paying the money. It's backwards thinking, but it must be done in our circumsances!
Sorry to be such a negative Nancy when talking about this issue, but it's just absolutely crucial in getting the word out.
One opposite side to this, is "patient abandonment" which is when the doctor tells you he/she will no longer see you as a patient, effective immediately, but you are currently in "treatment". In California, this is against the law, and it is serious. I came close to having this happen to my son, and it was scary. It actually had to do with our LLMD refusing something, and my pediatrician (who did not treat my son for Lyme, would not even work with my LLMD) brought up the subject. It was pretty wild, and I don't think about the situation any longer, but it is also a valid consideration.
Patient Abandonment . . . hmmmm.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
Since I've only seen her a few times, 3 I think....I don't think I'll need anything from her. The only lab that was done through her was the WB that was positive however, I went up there that day when they called me with the news and got a copy of it.
Then I went down the next day and made a billion copies of it, because I'd hate to lose that crap. My Primary Care who is a Nurse Practioner but way more knowledgeable than any regular doctors I've seen, has my records too, more of them.
And I know her opinion of me is high. She actually treats me like a normal human being. She signed off of me going to see Dr. C and she said that she never heard of cases like this down here and she was very interested in educating herself in it.
Because she just didn't know about this world of Chronic Lymies. She asked me to ask Dr. C to send her any information about what he knows because she wants to learn as well.
I thought that was pretty cool. But yeah, you're right, I have a snappy mouth and a sharp tongue, and I don't want my chart blackened. But geez, it's not like I called her up to fight, omg, I thought I kinda liked her, she seemed alright and then BAM...what a mean old witch. I don't like anyone f-ing with my diagnosis, or questioning it.
It makes me FURIOUS. Just accept me for this weird thing that I have and fix me. Quit telling me it is all in my head. I called to ask if she thought Neurontin would help instead of having to take benzos for my pain....which I *thought* would be the better thing to do.
But we all see how that conversation went. I like to speak my side of the story. It's hard for me to sleep at night if I don't. I'll lay there and just go over the scenario in my head over and over again about what I wished I would have said.
But there's always the other side to that too, maybe sometimes I say too much and regret that. It's usually the other way around though. I usually feel better standing up for myself than not.
But thanks for the insight....it's definitely something to think about and be careful with. I never thought about it that way.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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