posted
My GP referred me to an ID Specialist he knows. The apptmt was this AM. I went to placate my GP and perhaps find a knowledgeable ID MD (and my LLMD is in ME and I live in NYC). I'm getting worse lately after a few years of OK.
Immediately concerned by the questions i was being asked - I told him a positive Lyme panel from Igenex 10 years ago set me on the path to healing (obviously relapsing now)after 30 years of annual negative results from Quest...I had a share in a beach house on Fire Island and every time i read the symptoms of Lyme I said that's me!
so at end of his exam he said he wanted to send my blood to Quest in case i had a current infection due to a trip to Fire Island last fall...
I got up and started getting dressed and told him this wasn't going to work...that i didn't trust Quest from painful experience..and that i had just finished informing him of that fact...he replied that Igenex employed faulty "science"
I replied that that faulty science 10 years ago was what set me on the path to almost complete recovery...and that I feel sorry for his patients who continue to be sick with Lyme and or co-infections because they rely on his faulty knowledge of what "science" means...
that thousands of people get better when they move away from his definition of "science"
i'm angry that i wasted my time, i'm angry that my GP here doesn't know enough about Lyme and my experience to have avoided this and I'm angry that i still felt compelled to pay the copay before exiting his offices...
so I guess I wait until March to see the local LLMD, the first opening on his schedule...
do you think my outburst made this ID MD reflect on his position?
Posts: 277 | From NY | Registered: Jun 2005
| IP: Logged |
steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
No, it will not change the way he thinks about Lyme, that goes for ALL ID docs. (ID"S are almost always a waste of time).
Sorry for such a bad visit, but this is all so common with ID docs.
March isn't too far away, you'll have a much better visit with your LLMD.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: Do I think your "outburst made this ID MD reflect on his position?" (end quote)
No. IDSA ID doctors will not. They absolutely will not. It's truly a puzzle but after seeing this sort of thing for years, I believe they would send their own families to the horrors of hell with lyme before learning the real truth of it.
new Q: Do I think (seeing that you were already there) what you said was accurate, necessary and brave?
Indeed.
another new Q: Do I think you are correct in reaction about your GP who sent you there, that the GP is not at all "enough" LL to even get this much "okay" and know enough that the ID doctor's stance was NOT at all going to work out for you --
Yes, your reaction is spot on. The GP should have known more about that ID doctor so as not even to send you there.
Please share your experience with ALL the lyme support group leaders in a large radius . . . so if others get the idea that maybe this guy could work for them, in some way at least . . . well, they need to have red flag so they can avoid him.
GIVE POWER TO TRUTH and TRUTH TO POWER -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Time to find a new GP too. Does the GP even believe you have Lyme? Sounds like the GP sent you there to try to shut you up.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Would you like some links to a few key herbal formulas that are helping me tread water? Berberine is especially helpful, I find. Not the lotto ticket but a very good help to me.
Might you consider a rife machine? If so, I can post links to get you started in checking out that avenue.
&/or maybe your LLMD will have a cancellation sooner than March, or if you call and talk with office manager, they can give it some thought, ask the LLMD and get back to you on any specific action you can take as you wait for the appointment.
Although it sounds like this is a new-to-you LLMD so that may not work out so well. They can't likely "prescribe" anything over the phone but if they know you maybe the could suggest a certain supplement? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Judie has an excellent observation that sort of slipped past me. I had though maybe your GP just didn't do his homework on who he was sending you to. More likely is her take on it:
"Time to find a new GP too. Does the GP even believe you have Lyme? Sounds like the GP sent you there to try to shut you up." (end quote) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You were braver than I was in similar situations. Just left those offices without rebutting ignorant and insulting remarks from docs. It is very hard not to be cowed by these people. Might be good for people like me to take along a little card with a statement printed on it, to give us courage.
I have heard stories of the lyme denialists giving better treatment to family and friends than we would get from them. And saying nothing about it or changing their outlook. What does that tell you?
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I have seen ID doctors deny seizures were even happening, even when right in front of their own eyes. More than once. More than even several times, several different ID doctors.
And why doctors what someone who has fallen or seized to get back up right away - well, that really baffles me. Nurses, too. "Get right back up" must their first line of action no matter what.
Same with denying falling, inability to speak, even when they see it.
"Deny" is their meal ticket, it's their mantra, it's in their blood and wired into their brain cells. I think they get paid for the number of times they "deny". -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Keebler, sure i'll take a stab at herbal remedies you think might help...i was a Dr. Z herbalist...actually going to call him to get back on the allicin routine (altho i dread that - guys in the gym years ago when i was on it, could smell me a long ways away)
and i could start rife ...just didn't want another machine in my life...
Posts: 277 | From NY | Registered: Jun 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some options to help hold down the fort, in alphabetical order, but I suggest giving Berberine a try as you sort out a fuller plan.
[ 01-30-2014, 06:47 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Dan, you did the best you could. Good job speaking your truth.
I can't blame you for hoping, just a little hope that this might be one of very few ID that do get it.
We hear about them every once in awhile. It does happen. Be proud you walked out of there with the truth coming from your mouth.
The fact that you were lead to stupid, is beyond you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hello there Dan,
Not sure if you're aware, but us "Lyme Crime" fighting Kung-fu warriors have an award "Golden Numchuks". (mixing up martial arts-sorry folks).
You win it this year.
Award goes to you for saying the things that need to be said.
For all of us that have been belittled and brow beaten by the Robot docs...but don't have quick enough minds for a sharp rebuttal before leaving the office.
I give you a standing ovations, IV line infusion and all!
No, ID is short form for IDiot. He will brush you off as another Lyme Loonie.
But you did all of us a favour by doing something I have only imagined doing.
The best I have come up with is, "I believe your information is outdated. There are a lot of newer studies available now."
When what I really wish I did was flip them the bird, grab my file and tear the posters off the wall on my way out the office. (Bartonella infection...)
Haha.
Good for you, you made the right choice and chose the right action.
Judie and Keebler are right. Time for a new GP!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry you were subjected to that treatment. You did the right thing though, something many can't bring themselves to do. If you'd like to add to it....
Boot #1- To top it off I'd love to see you call the billing department of that office and very nicely change your mailing address to the same address as the doctor who sent you there.
Boot #2- Then I'd like to see you contact IGenex in writing with the details of what was said, time, place, etc. They need to know these things, and often take action.
Boot #3- Be sure your current doc knows you were VERY unsatisfied with that referral.
You might even say to the office person you meet when you go in, "who do I report a really bad doctor to, one that I went to as a result of a referral from this office?" It would be nice if others were in the waiting room when you said it.
I've got more "boots", but this should give you at least a little satisfaction.
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Tincup-LOVEIT! You need a Lyme Ninja bandana for those boots too!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We should be "allowed" to not pay a bill, and tell our insurance company to not pay a bill for an appointment with a doctor who is not well enough educated in the subject for which we seek advice. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
If you tell the insurance company not to pay it.. guess who will be stuck with the whole bill?
Don't hit me .. but the ID duck may have been looking for an "out" so he could treat you. IF the test had come back positive, he perhaps would have treated you. Not for long, but he (in his mind) has to be "justified" in treating you.
He doesn't realize that a negative test from a lab like Quest can cause MANY problems for a Lyme patient. He doesn't understand ANY of that.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I agree Keebler.
Like at a restaurant, when the meal arrives raw, or cold, or with a long hair in it...it gets taken off the bill.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
Call the office manager and complain.
Posts: 631 | From the south | Registered: Nov 2008
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Good for you dan-i dont think the doc will change but i bet your immune system will work better because you spoke your mind instead of keeping it all inside
I also agree with tincup that you should tell igenex-they are easy to talk to and it is important for all of us. They might even send the doc a letter with the results tht proved they were fine
That might make him sit up and notice...maybe.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I went to a rheumatologist and I mentioned Lyme and he freaked out. He only wanted to know what Dr diagnosed me with Lyme. He spent most of his time, in his office, looking up my doctor on his computer.
He could not gather himself to even examine me, he just kept asking me about the doctor who said I had Lyme.
I finally ended the appointment, discouraged and mad. I am sorry about your appointment, very frustrating.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Bravo! Dan, Could you please come with me tomorrow to a sleep specialist appt?
I filled out the sleep questionnaire today and mentioned LD as the cause of my insomnia. Pretty sure I'll just get the silent treatment on that.
But if he says anything, I'd just get tongue-tied and whatever I say will come out sounding lame.
Way, way back when I told my PCP that I had a positive Igenex he said they have "an axe to grind." I was too stunned to reply.
Posts: 1297 | From USA | Registered: Dec 2002
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Go back to his office. The next time bring a vial of ticks with you & let them loose on his chair.
He will REALLY UNDERSTAND come soon after that.
Posts: 2087 | From NY | Registered: Oct 2011
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Never give these dopes the name of your lyme doctor.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
posted
When I was being treated and my son was being treated and we went to see any kind of specialist or even sometimes a GP, I didn't even mention Lyme. Even when my son was on a bunch of medications I didn't tell other doctors. The only time we talked about it was at the cardiologist when he was getting checked out.. but that was directly Lyme-related and that cardiologist had already had a couple of Lyme patients that needed pacemakers.
If a doctor prescribed medications I just let them call them into the pharmacy, but before I picked them up I called my LLMD and asked if it was okay to take them.
I just didn't want to deal with the conversation at all. Since my son went into remission, I have told the story of his treatment to a couple of doctors and I have noticed that some GPs are getting a bit more open-minded about it all.
Also-- doesn't NY have some kind of law against using Igenex?
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
No, not true. In fact, that lab is listed as one accepted in the state. They have all the certifications needed to be used anywhere. Those who say otherwise are misinformed or deliberately not telling the truth.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Well said, Dan. What you said may not penetrate that doctor's resistance to having an open mind, but that doesn't mean that it wasn't worth saying.....you can be proud of yourself and know that you said all you could.
Posts: 1647 | From UK | Registered: Nov 2008
| IP: Logged |
posted
Whenever they say whatever they try to say, I do like to answer back. And that's where it helps to be aware of as many facts as possible.
For example, in the case of IGeneX lab, it's CLIA approved -- stands for Clinical Laboratory Improvement Amendments, from 1988, meaning it's passed federal regulatory standards, so it's a fine lab. Just know these ducks love to lambast IGeneX - it's their sport...
IGeneX also uses two Lyme strains, the B31 and 297 ones, instead of only the B31 one, so it can catch most strains, including international ones.
I like to have Lyme brochures ready to hand over.
I usually figure on paying a visit to the office staff when either the doctor or I walk out on one another! The staff can't walk out.
The approach I take is a very real one, as in you, your family, your friends, etc could get these infections, and here's what you need to know...
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I just sent my post along to Igenex with the Dr's name so if they want they can contact him, send him literature, whatever... I'm also thinking of emailing my post to my current GP who is new to me actually, because he bought my other GP's practice
i want to express my disappointment - actually i want to educate him too - i know he has lots of patients who have weekend homes upstate New York on Long Island and on Fire Island...he should know more about Lyme and co-infections...!
Posts: 277 | From NY | Registered: Jun 2005
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I walked out on an infec doctor after she said I dont think you're sick at all.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
Dan -- What you did took courage. No, I do not think it will change this doc's opinion.
But I agree with Robin and Tincup -- educate the docs with facts and printed literature or medical journal abstracts.
And educating the office staff is just as important or even more important than educating the doc.
Nurses often have just as much interaction with patients as docs and some of them are even willing to tell other patients to seek treatment elsewhere if they suspect tickborne diseases.
You could also log onto one of the doctor rating sites and rate the doc. Your comments might prevent someone else from going to see that doc.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
Sorry you're having hard knocks from Quacking Doc's. glad you had what it takes to walk out when you did. Before he could judge you any further. But it only means another search.
I saw over 15 Drs before I was blessed when i went to the library and check out a book titled Coping With Lyme Disease. Written by many many Drs and Psych Drs. Anyway Kathy Cavert had several pages written from a patients view.
Kathy Cavert's life career was the head nurse in ICU. She read to children at the library. She had a great life until Lyme changed her life. She was on the IV port and dragged the IV pole around her house.
The reason I know these details is due to the book and her name is listed in the back of the book for credits and references of all those that contributed in the book. The rest of this story does have a point.
So I called her and called her and called her and called her for 6 mo. The reasons for all my calls were based on Lyme symptoms pain etc... She and I became phone friend. This was before real cell phones and way before cell texting and Skype. Don't worry there is a point to this. She saved my life.
And every once in awhile her fiancé answered. So I got to know him via phone. They had a little game if she came home from where ever usually the Dr. When she came in he'd say the lab called and your brain still hadn't come in. I know funny right. There is a lot more to this story and history. Anyway you can type in a search her name you will find her and then select candles I think. And look close and you'll see my name on one of them.
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
| IP: Logged |
Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
I just did a search for Kathy Cavert. You will find 4 web sites her bio and others. About her life. She was a giving and gentle woman.
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
| IP: Logged |
Annie C
Frequent Contributor (1K+ posts)
Member # 14
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
| IP: Logged |
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Wow, Annie C. You are member number 14. Don't see such oldtimers here often. Hope you are doing OK. Nice to see your tribute to Kathy.
Posts: 2888 | From USA | Registered: Mar 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic