It might be a lie but we can little ones every now and then can't we?

Well I read it in the ______ name of medical journal, dated ____ 04.

I take the time to learn as much as I can about all my illnesses so that I may teach you since you didn't learn anything about lyme at college and in your residency.

How much time have you spent researching lyme disease? I spent 3-5 hrs. daily online for the newest info.

My treating dr. who dx me never had a patient w/lyme before. I told him I'd been researching 3-5 hrs. daily, and last time I talked to him..."well I've been reading all the stuff you gave me earlier and learning too". You can teach an old dog, new tricks if you have a good relationship w/them.

My favorite all time thing came out of my son Dominic's mouth this pass summer.

We were at the eye dr who is suspose to be the best around. Dominic is always seeing hundred of dots (floaters) and flashing lights.

Well he said it was nothing and it was normal. I said the Lyme Disease can cause the floaters and lights. He said those famous words of Lyme Disease does not cause everything and is completly cured in 3 weeks treatment.

I started to get upset when Dominic stood up and said

"Don't get upset mom this is just another Duck and proceed to Quack his way out of the office!!!!"

Haven't been back and don't plan on it either.

Hm, I would say "Would you care to see the pictures of the spirochetes that they cultured in my blood??? (uring, spinal fluid, brain tissue etc)

Or I guess you must have missed the research going on at Columbia University............

or

"Your momma!"

Lenney looks like your being taught a few things too!

Instead of sparring with my family doc, I took the opposite approach. I have never disputed her word even when she in the past said "you don't have LD".

That was 15 mos ago. Now she has on my chart 'possible LD' even with neg ELISA. For now it doesn't get any better than that.

Also she was requested my LLMD to keep her informed of my tx. No longer is she condescending.

This, my friends, I accomplished, IMHO, by being humble and totally non-confrontational.

Do not alienate your doc, if at all possible.

If you have, then find another and take a different 'subtle' approach when speaking of LD. Don't force printouts on them.

The tide is slowly changing IMHO and this is evident to me as my doc is reaching out for the LD raft.

Leave the scuffling to those who do it extremely well. Go your own way gently and firmly. Don't get me wrong though, I am a letter-writer and will never stop.

Forgive me use of metaphors. It's my way of communicating with this horrible disease.

Of course I am cured of lyme disease, but I just may need another 18 months of antibiotics for my ACNE.

If lyme disease is curable, why do they call it A DISEASE?

I got lucky with my FOURTH GP. He hasnt questioned me at all, since the moment I walked in his door. I got my lyme diagnosis two weeks later.

The only thing he said was "Who do I send you to, what do I do, all I know is to give you antiinflammatories- I think"

I got real lucky with him. He does all my blood draws, etc.

Just to let you know I do not let or tolerate my kids being rude to people...But and big but here this Dr was telling Dominic he was not seeing things and refusing to listen to me at all.

And he has made comments about our "so called lyme specialist" in front of Dominic.

As Dominic said he is not being nice to us or to Dr C. There was alot more that I wanted to tell that Dr then just Quack, trust me.

But there are alot of other Dr's in this Great Country and I am sure I can find another one that would be willing to do an eye exam.

I do see what you are saying just don't want ya'll to think my children are out of control.

I guess the questions I want to add to this thread are, do we really need snappy comebacks to give to doctors? Is there a point when we lymies look a bit nutty trying to spread the lyme message every opportunity that we have?

Now I'm not pointing fingers at anyone so please do not take offense, but I think this post raises some interesting questions. We want to be able to put a doctor in his/her place because we are living examples of what this lousy disease does, but will the snappy comeback really make a difference? If you think so, then fire away, LOL, but here are some of my thoughts....

I've come to a point in my life where I just can't be bothered coming up with snappy comebacks for lyme illiterate physicians. You know you are in the presence of ignorance, and you know they are not going to be open to what you have to say because they now know that you know more than they do, so why challenge them? It's just a waste of time and energy. A completely different situation would be if a doctor asks questions or wants clarification, then that can be a very different situation and a great teachable moment....

Now I know many will beg to differ with me on this because it is the mentality here to take every opportunity to educate, but come on, it just gets to be too much sometimes. I have found that one of the best ways to avoid confrontation with a duck is to not go to one. Easier said than done, I know. I've made my fair share of mistakes and am now very cautious about which docs I see. If they are resistent to my lyme dx, I am out of there.....

I know I am sounding like a huge pessimist, but I have to expend so much energy fighting this disease that I just don't have the energy to take on the world and educate the uneducated....I know there are good doctors out there and so I choose to surround myself with them. If you are seeing an llmd, they can direct you to specialists such as eye docs, neuros, psychologists, etc, that are lyme literate so you don't have to go thru this more and more times.....

The other day I met up with an old acquaintance whose mother was bitten by a tick, EM rash, etc. I gave her some suggestions on what her mom should consider in terms of tx and she seemed really appreciative. My Mom was with me and she said 'I'll be she won't bother with what you said. ' And I have to agree with her....People will believe what they want to believe and even when a real live poster child for chronic lyme is standing right in front of them, they won't get the proper care.

And I don't think your child is ill mannered at all - just a very open and honest person!
cootiegirl

We wouldn't think that Dominic is out of control or a bad kid. I thought that was halarious.

We have all fallen victem of our kids repeating what they have heard the grown ups talking about. Only Dominic knows what it is all about (smart kid).

It just so happens he put it into context at just the right time and place!

I say chalk one up for Dominic. I couldn't have said it better myself.

I don't tolerate bad behavoir either but I would have probably given my son a high five on the way out the door that day!

Cindy

Softballmom, PinchotGail and Do-mi-niiiiiiiiiiiic you won 1st, 2nd and 3rd for my favorite replies.

Maryj, Cootiegirl and BettyG,

First off, I'm not trying to alienate, I'm defending myself. I'm not about to sit there, listen to a doctor and bob my head up and down to something I know to be false. They're only doctors and it is okay to challenge them. For the future LD patients we probably do want to challenge them if they're providing patients with incorrect information. Besides, I'm paying them for the service.

I am the poster child for lyme. I actively sought a LD diagnosis for 21 years and I saw over 120 doctors while doing so. And the average length of illness prior to diagnosis is 1.7 years? I was an exemplary patient. I tried to take them at their word. Polite to a fault and always followed their instruction, but I refused to take depression, anxiety, hypochondria and the rare `I don't know' for an answer. If I had, I wouldn't still be here.

If they consider me `looney' then I was `looney' before my diagnosis, lyme disease having nothing to do with it. The grave diagnoses and close calls I've had through the years are enough to curl your hair, and all can be attributed to LD.

If my LLMD recommended a specialist (eye, neuro, psychologist, etc.) I would have no choice but to travel 9 hours to see him/her.

In my humble experience, the only way to shake up the medical community is to hit them right square in the ego (first), then the pocketbook . . . but preferably both.

On the other hand maybe this is all too fresh in my mind/body, and in another couple of years I'll be able to merrily skip away and be thankful for losing most of my adult life to this experience.

So here's what I think:

Sometimes you do what you need to do to convert a doc to being lyme literate, and you just snuggle up close and show how sane you are and how impeccable your sources are.

And somtimes you do what you need to do to not be a victim YET AGAIN, and you fire off a parthian shot.

I think that was well put. Prior to my Lyme diognosis I knew something was seriously wrong with me. However I could not find a Doc to get pat the anxiety issue even with the Stoke sitting out there in front of their eyes. I put all the past issues into context, I collected all my past records, I researched my history, and I led myself to Lyme with the aid of someone hear that found me on Braintalk. Then after Lyme I begin to here negative feed back from my PCP and there nursing staff every time I speak of it.

That would send me into tears only furthering their thoughts of anxiety. I feel I can't win sometimes. On my last visit to my PCP my BP was 140\80 I think which is extremly high for me. Just going to them makes me upset. I want to make them understand but sometimes I feel like I am beating a dead horse.

In some of us emotions run too high and our knowledge of the disease is still minimal to compete with these Dr's, so in some circumstances this may be all some of us have.

Not saying I am going to call anyone a stupid head. I hope you all know what I mean.

Cindy

Yes bitingback, we are all poster children for lyme disease. We have all been abused by the system. And no we should not just 'sit there' as you say and take it and bob our heads in agreement. Why do you feel the need to 'defend' yourself with doctors? I sure don't. If they don't believe me, that's their problem, not mine, and I don't waste my time with them. Use doctors that are lyme literate and you won't have to 'defend' yourself....

You want to try and 'change' a doc, then go for it. I agree that the mainstream medical community is in desparate need of education, but most, unfortunately, are reluctant to hear it from us. As I said in my earlier post, I have had some of the best discussions with physicians that are open to learning more and I think that happens as a result of the presentation of the material.

If you are told bluntly you are wrong and what you believe is incorrect, do you want to hear what the other person has to say? Heck you didn't want to hear I disagreed with you because you immediately went off to say you are the poster child of lyme and have been thru so much! You defended yourself with me - a fellow lymie who 'feels your pain'.... The same holds true for physicians and with people in general. There is a way to approach someone and a way to approach someone. I think sometimes we get so zealous with our lyme message and want the world to know, that when people see us coming, they head for the other side of the street. We need to be careful of that.

quote:

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Originally posted by Softballmom:

We wouldn't think that Dominic is out of control or a bad kid.

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He was just stating a fact of life as he knows it! He's had to learn the hard way what a duck is!

I do believe everyone has the right to express there opinon however they feel.

If you have the time and patience and a willing dr that wants to learn power to you, (which I have come across a few of them)

Some people don't want to have a smart remark for a dr. and I do agree sometimes I have left a dr's office so upset I wondered what was the use.

I think Softballmom (sorry I didn't realize your name was Cindy too) said it best when she said:

"We have all fallen victem of our kids repeating what they have heard the grown ups talking about. Only Dominic knows what it is all about (smart kid).

It just so happens he put it into context at just the right time and place!"

Thanks I couldn't of said it any better!

Can we get back to the fun again? I sure would like to hear what Tincup would have to say to one of these Dr's?

What I'm trying to say is that there is a big difference between being assertive and being aggressive and coming up with 'zingers' is aggressive and serves no purpose other than to make the sender look bad. While we are dealing with physicians that know little about this disease, do our snappy comebacks really help? I don't think they do. They just reinforce an already preconceived idea that people with lyme disease are a little 'off'. If a physician is not receptive to the information we have, then what is wrong with walking away?

It is far better to be assertive and tell the doctor that you do not agree with him/her on their stance on lyme disease, and that you will not be returning. And as I have said before, stay away from ducks at all costs - it will save a ton of grief in the long run.

I know some of you were looking to Tincup for her snappy comebacks. No one has more disdain for the ducks than she and no one does it better than TC, but I don't think you would find her to be rude with a doctor. She has a ton of knowledge in that tinny little brain of hers and I can bet you that she would be more assertive in her delivery than rude....

quote:

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Originally posted by cootiegirl:
I certainly don't want to be the one here that is taking the fun out of this post,but I just don't see what is so fun about being rude to a doctor. I also knew that by voicing a differing opinion on this thread, people would not like it.

What I'm trying to say is that there is a big difference between being assertive and being aggressive and coming up with 'zingers' is aggressive and serves no purpose other than to make the sender look bad. While we are dealing with physicians that know little about this disease, do our snappy comebacks really help? I don't think they do. They just reinforce an already preconceived idea that people with lyme disease are a little 'off'. If a physician is not receptive to the information we have, then what is wrong with walking away?

It is far better to be assertive and tell the doctor that you do not agree with him/her on their stance on lyme disease, and that you will not be returning. And as I have said before, stay away from ducks at all costs - it will save a ton of grief in the long run.

I know some of you were looking to Tincup for her snappy comebacks. No one has more disdain for the ducks than she and no one does it better than TC, but I don't think you would find her to be rude with a doctor. She has a ton of knowledge in that tinny little brain of hers and I can bet you that she would be more assertive in her delivery than rude....

I was a college professor before this illness forced me to leave my job, so I have been educating people for many years, and I look for every 'teachable moment' that I can find. But I also think there is a time when the message will fall on deaf ears. I know - I had students like that. So you do your best and move on and not take it personally....
cootiegirl

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I have been doing this for years when my diagnosis was just fibromyalgia and a many others--i interview the doctors now-ask questions on the belief system of fibro etc and if they poo-poo it I stand up thank them for their time and walk out.

The way I figure it we are paying them and they work for us not the other way around. I will not give a doctor the time of day that is arrogant, rude and does not keep up on medical issues.

some of the time I was not charged for the visit by telling the front desk he would not work out sometimes I was. In the end it is worth it. Just since I have been in Charlotte for a year and a few months I have visited 5 doctors that I have done this with-3 were pain management ducks.

Along my 15 year road of illness I have brought info on lyme to 2 rheumatologists and at the time was not lyme literate myself and they insisted that was not my problem--I have pushed many doctors and told them this is not just fibro I have way too many symptoms and diagnosis's for all this not to be connected--a few fired me along the road or refered me again to a psychiatrist-LOL

My persisitence finally paid off 15 years later and I now know what is and has been wrong with me--not that I am happy about it --but at least now I know and am being treated for it.

I work in the medical system now as of 5 years ago and have learned that doctors are just people and like every other human being they are not perfect, some are good and some are not.

I respect your opinion and I know exactly what you are trying to say. I hope you understood what I was trying to say in my last post too. In my area as I am sure is true in some others there are not alot of PCP's to choose from and we can't afford to drive hours away to our LLMD for common medical needs. Also if they are like my LLMD getting an appt in a momments notice is imposible. So we are left with the duck with the snide comments about our LLMD and Lme and tics like the one I got yesterday when I had to get a tic head cut out of my sons scalp. "Lyme comes from bigger tics not the little ones." Hahahaha.

After a while we just get worn out. I am glad that you and some others have so much patience with these Ducks. As for me, I have my limits and at some point my patience will run out. So far so good though. I have been able to hold my composure.

But at any rate if I do lose it and use one of these comments we have posted one day there will be no loss because they allready think I am nuts anyway!

Lyme is the fastest growing infectios disease in the nation.

I see that you are a very astute clinician in mananging my care, and I am taken aback by many Doctors' stance on LD, and very concerned for all patients in endemic regions who go undiagnosed and/or undertreated for Lyme and related tick-borne diseases by many well esrablished physicians such as yourself.

I strongly feel that the madical communuty's unwillingness to acknowledge the very large body of peer-reviewed medical literature put forth by Doctors treating and studying chronic Lyme and other TBD's is hugely detrimental to a considerable number of patients' health and welfare.

I myself must move on and seek adequate treatment, because this illness is treatable, and progressive when left untreated.

I emplore you to begin to research the information put forth by the International Lyme and Associated Disease Society (a medical society comprised of top specialists working hands on with TBD's), because while so many Doctors remain unwilling to consider the research on these illnesses, patients continue to suffer terribly without adequate care. The information put out on Lyme being treatable in three weeks is by Doctors who have no experience treating chronic cases..
The IDSA has known financial ties to insurance industries.
They do not acknowledge the condition even though it has been so well documented in the medical literature.

A CNS infection, for example, is not unlike syphillis, which requires long term aggressive therapies, this compounded by co-infections and the patient's overall condition pre-infection.

A similar situation plagued Aids patients for many years, and it wasn't until advocacy groups threw blood on the steps of St. Patrick's Cathedral that physicians finally conceded to begin to consider things.
There are many thousands of Lyme sufferers who remain without help with a chronic, debilitating infection.

Yes, some people can manage Lyme disease with early, aggressive treatment. However, many may be dealing with a re-infection, co-infections, or a compromised immune system.

Until more Doctors are willing to put aside their aversions to the Lyme stigma, nothing is going to change for the growing number of sufferers. We need physicians to look for answers themselves and to apply current research.

Will you consider looking at a comprehensive packet of medical articles, abstracts and evaluation and treatment Gudelines to see if you find any of the information useful for you and your patients?

Thank you for your help and for your time...

Mo

Maybe worth considering something like this?
I believe the physicians are either too wimpy to step outside the box due to insurance pressures, their collegues, the group medical mantaltiy, pride, or fear of malpractice for past misdiagnosis or mistreatment..so they may not even consider it based on any or all of those things...

but at least you can make a strong statement, and perhaps aome part of it will stick in the back of his/her head as advocacy groups, Docs, patient support associations keep up the pressure, and more comes out in the media.

Messed up situation, that's for sure.

Mo

Now that was good! I was gonna write a letter to my Doc when I request my records for my new pcp. Can I use that? I could never come up with something that good. At least not yet. I am still very limited on knowledge of this Disease myself.

My children will still be seeing her so I intend to keep giving her info on Lyme disease but I wanted to give her an explanation for my leaving though. She is a wonerful PCP exept for the issue of Lyme Disease.

Of course if things don't change and my son is diognosed after he see's Dr J on the 16th, I will be moving him along with my other children too.

Thanks

Another phrase that has helped me with the school stuff and other challanges, is
"experience treating chronic Lyme to efficacy"

or "expreience identifying multiple tick-borne infections"..

Either using it to point out that the Docs who put out the IDSA Guidlelines (Infectious dicease ducks) that say "no Lyme" or "Lyme is easy to treat"..blah, blah, blah..

To say they have no experience...

Or to point out that those that do specialize in treating and studying the disease have experience...

In my case the school proposed a medical evaluation by the school physician..
so asking "What experience does he/she have in treating chronic Lyme to efficacy?"

Was an effective question..answer is "none"..so, of course, my son needs medical evaluations done by specialists..
otherwise it would be like having the school physician override reccomendations made by a cardiologist re: a heart condition, ect..

I'm off track..I just meant I would use that phrase somewhere in these kinds of talks with non LL Docs.

They may come back and say it doesn't exist..so then, you may try hard to bite your younge, and hand them a lengthy bibliography of medical articles siting persitant infection.

Cheryl's website has this at www.lymeinfo.net I think under the persistance file.

They also have a great pdf on symptoms..really great...

These two packets plus the ILADS Guildelines
(now availablr online I think)..would make a pretty impressive package.

I think I have all these here on file of you want em.

Mo

Very, very well put. Would you mind if I copied, printed and mailed it off to a few doctors?

I'm not very good at coming up with quick come backs anymore. LOL!

What I did do, (once I found an LLMD and began feeling better) was write a poem titled "Lyme Disease and Me" ( I posted it here last year) about my symptoms and the struggles I went though trying to find out what was wrong with me...

And I sent it out in a Christmas card to all the ducks I had the misfortune of seeing...

I especially loved sending the poem to my ID duck who I mentioned in the poem. She was a real pill..even my PCP reported here to the medical board and the CDC..

I wish I could have seen her face when she read it! LOL!

Starr

I liked Dominics saying...Out of the mouths of babes! They say it the way they see it.

I remember once when we were trying to get Mikayla diagnosed, her so called pediatric ID specialist, asked me who this Dr.Jones was I kept referring to..

And Derek, my little angle said..."You don't know Dr.Jones!? He's the best Lyme doctor in the world" Then he asked me right in front of the ID Duck, "how can he be a children's lyme disease doctor, if he doesn't even know who Dr.Jones is"??

Instead of being embarrassed.... I smiled.
I thought, ya know, this kid is on to something. He wassimply speaking the truth. I think we can all take lessons from our kids! LOL!

So on our way out the door, I pulled out the ABC's of Lyme Disease Brochure with Dr.Jones write up in it, gave it to the ID duck and left.

And ran to Dr.Jones

Best Wishes everyone!
~LymeBrat

How do you sleep at night knowing you are killing people with your ignorance???

Maybe a tic will bite you in the ass and a doctor will say that to you - happens all the time ya know?

quote:

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Originally posted by lymebrat:

And Derek, my little angle said..."You don't know Dr.Jones!? He's the best Lyme doctor in the world" Then he asked me right in front of the ID Duck, "how can he be a children's lyme disease doctor, if he doesn't even know who Dr.Jones is"??

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Proves my point exactly. Derek was stating the obvious, as was Dominic. That is NOT being rude. It's being an honest kid!

Missy....please post your poem again in a separate thread. Thanks!