What would you say?

[Ginny43]

Story and background first.
Part I: Since getting lyme, I'm more sensitized to even mentioning that it's a problem. I believe that every thing that happens to me is lyme related. Most doctors don't. My first visit to an opthalmolgist about receit eye problems, I said I had lymes. Quick reply - "You've been treated haven't you?" My only answer was "I still have the symptoms." What would you have said?

Most of the time my mind doesn't work anyway. On top of that I've always been a "I should have said" person. I read more now to know that LD does affect eyes, but these doctors won't consider that if it affects the eyes in one way, nothing keeps the bacteria from affecting it in other ways. I'm trying not to go blind, but I think they've deliberately closed their eyes to causes.

Part II: How much should I say about vitamins and supplements that I take? You'd think they would accept the info as useful. So I misjudged when telling another eye lady that I've been taking aspiri, eyebright, bilberry, and horse chestnut to sustain eye health after a central retinal vein occlusion. Her reply was a lecture. She only trusts the Food and Drug Agency. Who know what's really in a supplement? They could be marketing manure. So I could only reply that there are companies and there are companies. I should have asked her why she thought all the drug companies get sued. What would you have said?

This second lady really offended me which is why I'm still fussing about it internally - and why I'm telling you all.

The next time I get caught in these pc feuds, I'd like to be prepared with answers. Have you got any?

Still knocked out flat,
Ginny

[blimeyitslymie]

Ít's hard to predict how some docs will react. If I am going to their office for the first time, I try to talk with the office manager first and get the practitioners philosophy. I try to only see open minded physicians. I have wasted a lot of time with close minded, arrogant docs and don't have the time or energy any more for it.

I also try to bring someone with me, because I forget don't always remember what I am being told. I also try to make a list of questions ahead of time to ask.

If someone is rude to me, regardless of their "status" in life (whether they are a doctor or a blue collar worker) I call them on it right away. I don''t try to educate the resistent and I may just end the conversation with, "let's agree to disagree" .

hope that helps just a little.

try not to sweat the small stuff...and while this seems big, in relation to your stress levels and need to repair your immune levels, this is small stuff. if possible, try to let it go.

B~

[Sonsie]

I hate it that you have to fight like this, Ginny. It is wrong, and it certainly isn't easy when you're as sick as you are. :mad:

First, let me say that I am very fortunate to be in treatment with an LLMD. But I went undiagnosed for years (except by myself), and I've been in your shoes many times. :( I still am occasionally. Recent example: I was having issues with my feet -- tendons were hurting and so forth. I knew this was due to Lyme. However, when I saw my podiatrist, I didn't mention Lyme. I just told him my problem, and he told me what exercises to do and what shoe to wear. That's all I needed from him. His solution works. Of course, I kept my LLMD in the loop and he knows that I never disclosed. He also knows that the problem I have is common in his patient base.

In general, I never disclose Lyme unless I'm forced to. I'm usually forced to only when they want a list of the meds I'm on. (It shocks me that lots of times they don't bother to ask what meds I'm on, by the way.) My list (Rx and OTC) fills a page, and "stunned" is always the first reaction. :eek: They want to know why I'm on all these meds. When I tell them, they put it on the chart. (Don't know if they put "lunatic" next to it! :D ) And then they go ahead and deal with whatever it is that I'm there for. I've never met a non-Lyme friendly MD who has a clue. And their nursing staffs sure don't either, of course. So unless I choose to tie Lyme to whatever it is I'm there for, they can't and don't make the connection on their own. And if I were to say, "I'm here for X, which is due to Lyme," I am sure they'd be as judgmental as the people you've dealt with.

If anyone chooses to lecture me, I sit politely but don't listen. I certainly don't care what they think, if I have done my own homework about the supplements or whatever the issue is. Why would I respect the opinion of someone who knows less than I do? :p And I learned a long time ago that it is not possible to educate a closed mind. So I don't try to have any snappy answers for them. I find that we are both happier that way. ;)

At this point, I use conventional doctors only for things requiring solutions that are the same whether the patient is a Lymie or is normal. And I am slowly, very very slowly finding doctors who understand Lyme, even if they don't specialize in it. When I see one of them, I always disclose. No lectures or judgments from them, just extra caution about certain aspects of whatever is going on with me. Example: My Lyme-literate opthamologist spends extra time examining my optic nerves, to assess whether or not I have Lyme involvement there. (Yes, Lyme can and does affect our eyes -- any nerve in our bodies! It is a neurological disease. Good grief! Didn't these people go to any of their classes when they went to med school? :confused: )

I've learned that the doctors who understand Lyme are much better doctors than the doctors I've seen until then -- not at all surprising, considering that "outside" illnesses like Lyme are accepted first by doctors who are open-minded and generally interested in new ideas and new approaches for all sorts of diseases. :)

Hope I've helped you a little bit. Take care.

[blimeyitslymie]

sonsie,

that was eloquent. thanks for sharing such wonderul information.

[Erin]

Ít's hard to predict how some docs will react. If I am going to their office for the first time, I try to talk with the office manager first and get the practitioners philosophy. I try to only see open minded physicians. I have wasted a lot of time with close minded, arrogant docs and don't have the time or energy any more for it.

I also try to bring someone with me, because I forget don't always remember what I am being told. I also try to make a list of questions ahead of time to ask.

If someone is rude to me, regardless of their "status" in life (whether they are a doctor or a blue collar worker) I call them on it right away. I don''t try to educate the resistent and I may just end the conversation with, "let's agree to disagree" .

hope that helps just a little.

try not to sweat the small stuff...and while this seems big, in relation to your stress levels and need to repair your immune levels, this is small stuff. if possible, try to let it go.

B~


I have a little mp3 player (made by Sandisk) that has a recorder on it. (it records about 4hrs worth of audio) that I take with me to appointments. I never tell the doctors that I have it and that I'm recording our conversation. I sometimes cant remember what they tell me, and that's the biggest reason I have it. I just want to be able to remember what they say, so I dont have to tell my dad that I cant remember what the doctor said.

[tmptmp]

I'd like to be prepared with answers. Have you got any?


I use another tact. I ask questions.

What do you think this is?
How is it treated? What can I expect?
Could it be related to Lyme?
Could this vitamin be contributing to what's going on.

Following up their answer with 'why?' What I'm looking
for are medical answer to my questions.

Their answers help me to decide if I trust or
mistrust this doctor. If its mistrust, they're not
for me.

[Buttons2]

Ginny, you've brought up a very good point. From my own experience over the years I've come to one basic conclusion: best to keep my mouth shut! Why? Cause listing all the herbs,vits just makes me appear to be some kind of kook. And when I read a copy of the doc report & they have written down stuff I've NEVER taken (saw palmento for instance), I came to realize they not only don't listen,they can't read. (I used to write out the list beforehand so they could just attach it to my file).

Now because of how stressful this became for me,the anger & frustration,even tears,I've concluded that ignorance is bliss. Conventional medicine doesn't want an education about alternative medicine. We can't change that.

Is there danger in leaving out info? Could be. I think you have to weigh the truth of complete revealment against the anticipated reaction. Can you handle the scorn? The distain on their face?

Of course those of you on anti-biotics need to reveal this. Then take it from there. You aren't seeing the podriatrist or the opthomologist for Lyme,you're there to find a solution to your probem. Let them feed their ego with their own conclusions. Will this actually help you? Maybe & maybe not.

Whenever I research a particular symptom I always read several different sites,and I'm always amazed at how many different conclusions there are. So it stands to reason that every doctor gets different training & relies on different medical books for their info. I doubt any of them get much (if any) training regarding supplements. That's not what they go to med school for.

OT-just think how the FDA finally flipped the food pyramid upside down in recent years. Between the FDA & the AMA we patients sure aren't gonna change their thinking.

I could write a book about the many different conclusions the docs within the same specialty can come up with!

Everyone has to deal with their own situation as it comes up. I strongly suggest obtaining a copy of the doctor's notes. This is where you will be amazed. Keep in mind they write rather mundane stuff down,like if you are cheerful & dressed neatly! Your posture,etc. Why they waste time & file space with some stuff I have no idea. For instance one doc wrote I firmly denied drinking coffee......well gee I've never drank a cup of coffee in my entire life,why on earth would that be notable? He could just have easily written down that I stated I felt 99% of my problems were caused by Lyme disease! Mind you this was an intern from a university hospital,you'd THINK he might have had some curiousity!

I've concluded they resent our knowledge,they went to school for years to be a doc. They fully expect their word to be the final word. They have alot of distain for info we obviously got from the internet. We're not supposed to know words they never heard of (i.e. mycoplasma).

One of the worse issues I come up with is giving a definative answer: where it hurts,when,how long has this been going on? When you state it hurts here one day,there another day,and gee I can't recall when this started.......they think we are nuts! They demand clear cut answers & we can't give them that. If you say everything hurts from head to toe,we're written off as a hypochondriac. I don't think they are trained to look at the overall picture.

Mix in the neuro issues & they have no idea how to repond. If you tell them you have poor memory but at the same time can rattle off 20 varied symptoms......their eyes just glaze over!

I think we just have to use alot of caution. Answer questions as simply as possible. I know I've been far too combative in the past. Refused too many prescriptions. I won't do that again. Let them write it out on a pad,doesn't mean I have to fill the script!

Rambling here,sorry. Good luck with all the ducks! Hope that in time we will win the war,let them win their little battles for now.

My 2 cents,Buttons
P.S. If the doc questions the anti-biotics you are on: perhaps just state that you are under the care of a doc treating you for Lyme,if they have any further questions,call that doc for an explanation. That way you aren't stressed & they are getting their info from a collegue(sp).

[blimeyitslymie]

I think there are definately herbs you need to stop taking before surgery. Unfortunately, can remember them, but would advise herbs being mentioned to a surgeon. Other herbs shouldn't be mixed with medication. E.G. you shouldn't take an antidepressant and St. John's Wort at the same time. There must be an online clearinghouse regarding these somewhere on the net.

[Sonsie]

I never tell the doctors that I have it and that I'm recording our conversation.
This is very illegal in some states, and the consequences are dire, Erin. Please assure me that you've checked the facts and are aware of them!

[tmptmp]

I never tell the doctors that I have it and that I'm recording our conversation.

It's also unethical.

If you ask the doctor if you can record because you
don't want to forget what's been said, a doctor worth
his/her salt will say, 'yes'

You should not record without disclosure and
permission.

[Erin]

This is very illegal in some states, and the consequences are dire, Erin. Please assure me that you've checked the facts and are aware of them!


Sonsie, I'm not planning on using the audio recordings for anything other than to be able to refresh my memory on what they said to do. I had one doctor tell me that I had to take a certain amount of pills in a Rx he gave me. I misunderstood how he said to take them. I thought it was 1 pill, 3 times a day. It was supposed to be 3 pills, all at once, per day. I was putting the recording onto my computer, and listening to it, the day after I started the pills, and realized that I messed up on how to take the pills.

btw, Buttons, in your message, you said the doctor had noted that you "denied" drinking coffee. When I was taking transcription classes to be a medical transcriptionist, that's just how doctors talk when they're dictating their case notes. It doesnt mean that they dont believe you, it just means that you say that you've never drunk coffee. I think they teach that stuff in the doctor school when they learn how to dictate their notes. They probably have to use that as part of a procedure on how to to word the notes.

[tmptmp]

I've rethought disclosure and permission.

I now say, ethically, only disclosure is needed.

The doctur should be told that he/she is being
recorded. "I'm recording what we say so I won't
forget anything."

As a patient we have the right to our records,
whatever is said to us in the office is on the
record unless requested otherwise and the
request is granted.

[Erin]

I've rethought disclosure and permission.

I now say, ethically, only disclosure is needed.

The doctur should be told that he/she is being
recorded. "I'm recording what we say so I won't
forget anything."

As a patient we have the right to our records,
whatever is said to us in the office is on the
record unless requested otherwise and the
request is granted.

I collect my records. I've got a binder all organized with copies of my records. (I copy them to my computer, print out a copy for my binder) So, actually I have 2 binders. One with my copies the doctor's give me, and one that is copies I made of the records that I actually carry with me when I go to see a new doctor.

They're all nicely organized on my computers too. I also have cd copies of all my MRI's too. (luckily my computer has not had a problem making copies of the cd's)

I impressed a couple of doctors with the binder already. Especially since my regular doctor's office seems to have a problem faxing my records to new doctors before my appointments.