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» LymeNet Flash » Questions and Discussion » General Support » What should I say to dr about lyme?

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Author Topic: What should I say to dr about lyme?
Barrie
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I had a very frustrating visit with our family doc. I had to take my daugher to the doc because she was sick last week. She has lyme and goes to Dr. J for that and has been on Abx for over three years now,she also has had three coinfections. But,my daughter either had "the flu" or possibly strept or even pneumonia. We all had what she had but, she got the sickest. On day four when she was coughing and still running a fever of 101.9, I thought I better get her checked out. But, when our family doc realized that Allison was still on Zithromax and Cedax, that is all she wanted to talk about and lecture me about. She gave me all the bad news on long term antibiotic use and how Allison may now be resistant to all germs out there and how difficult it will to treat her and blah,blah,blah. The doc just lectured me and let me know her disapproval and left. She didn't really tell us anything except that she doesn't have strept, just walked out the door. I looked at Allison and said that I guess our visit was over. Allison apparently does just have a virus. It was a waste of my time,money and the insurance's money. Once again, we were put on the defensive and I spent the visit defending getting our daughter treated. I am not good thinking on my feet so, I want to know what I should say to other doctors when they start questioning us? Believe me, I have since thought of a thousand things to say but, don't want to get kicked out of the office. This is not the same doc we had when Allison was really sick, we moved on to this doc who she herself and husband have had lyme. I am just so tired of defending ourselves especially to other doctors who we are seeing for something totally different. Same thing happened when she broke her ankle, I spent half my time defending ourselves to the orthopedic doctor. I am tired of doing it. When everyone else was willing to let our daughter get sicker and sicker with what they said was "post lyme syndrome" we were not. When our Ped. said that maybe in ten years she would treat Allison for lyme when more research was done,we were not sitting around for ten years waiting for her. We did our own research and read a lot before findng Dr. Jones. What can I say that will shut them up and let them know that we did what we had to for our daughter and will continue to do so in the future, now just tell me if she has pnuemonia. I want it to be nice but, to the point so they stop and just get back to why we are there in the first place. Any suggestions?
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kgg
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I am like you, I alway think of a thousand things I could have responded with after I have left the office.

So, as not to cause a problem, I would have said something like: "I hear your concern about this therapy and will consider what you have said, but my focus today is does she have pneumonia?"

Then when I left the office I would have muttered all of the offensive things I wish I could have said . . .

Karen


Posts: 1593 | From Maine | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Kara Tyson
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There Dr.'s go crazy with this anti-antibiotics bit.

They have gone so far the other direction that they refuse to treat bacterial infections with antibiotics!

It is true that people who are on long term antibiotics MAY become resistant to treatment 10 years from now.

But they have to make it 10 years first!

Quality of life matters.

***
On a side note, I think this refusal to give antibiotics is why there is a rise in people dying from the flu.

It is true that the flu is viral.

However, if it goes into pneumonia then it is bacterial.

To give antibiotics for the flu prevents you from having life threatening pneumonia. Duh...


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lou
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Any way you could just talk strictly about the subject at hand, and omit any mention of tick borne diseases? I don't see this as dishonest, just avoiding distracting issues, and saving yourself a lot of aggravation.

Maybe at some point we will be able to be honest with all our health care providers, and vice versa, but that time has apparently not arrived yet.

The other danger in allowing lyme treatment to enter in the discussion is that some of these zealots will feel obliged to take action against the doctors they think are overtreating. Not a thing we want to aid.

(P.S. It is hard to read long posts that are all one paragraph. Could you make shorter pieces, hit the enter key after every couple of sentences.)

[This message has been edited by lou (edited 20 February 2005).]


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bg
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Barrie, I agree with Lou and am asking that you EDIT your lengthy post above.

Show 2 sentences then hit enter twice to break things up for our brain fog. You will get more replies & good suggestions that way.

Also, you can position yourself in front of the door so they can't get away from you without your questions being answered.

Also, I agree with someone else's comment, I'm here to talk about _____ only, and keep it on track.

Of course, have all your questions written down. I also hand all my treating drs. my list of questions, etc. so they can use that when dictating their medical chart files so I hopefully will have ACCURATE notes covering everything.

Best wishes!

bettyg, Iowa


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Aniek
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When dealing with doctor's who don't agree with the Lyme treatment, I just tell them that I understand the treatment is controversial, but that I couldn't just sit back and not do anything when there was an option. After trying the Lyme treatment, I have seen improvement so I am continuing the treatment.

I also add that my doctor runs monthly blood tests and is monitoring potential side effects.

I know it feels icky and wrong, but you can even start by thanking them for their concern.


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JillF
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My child is only a toddler and shows no signs of Lyme, as of yet.

But this is a good post for me to read so that if my child has to get treated for Lyme in the future, I will be aware (and hopefully prepared) of the possibilities that another doctor(s) may not agree with the treatment and/or diagnosis.

I believe (and hope) that the pediatrician he has now (also our family doc) will be understanding. I know that she has started to learn more about Lyme then when I first went to her with my symptoms.

I usually carry information about Lyme in my purse to pass to anyone I might meet or see who might be interested in learning more. Who knows if a doctor would be interested in that, though, since most of them seem to think that they know more than their patients.

I did send a letter and a nice (letter-sized) pamphlet (that I ordered off of here a few months ago) about Lyme that was extraordinary to all the doctors I had seen prior to my diagnosis. I really hope the doctors took the time to read it...

[This message has been edited by JillF (edited 22 February 2005).]


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Linda LD
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JillF

Where can I download the information you put in your purse?

Thanks,
L


Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
snowboarder
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Barrie,

I feel for you and don't want to even go there with other docs. Lou I agree with you to avoid the lyme disease discussion and focus on the issue at that moment.

We have an awesome PA we see at the PCP's office who knows we have lyme. She admits knowing nothing about it and has no idea how to treat it.

When I see any kind of other doc I don't tell them I'm on abx because I don't want or need a lecture.

Kara your right we have to make it 10 years.

Previoulsy I had a pedicatrician who I thought was wonderful until my 8 year old got sick and they did nothing. At that point I fired the pediatrician.

I'd love to see some of these docs walk in our shoes and deal with what we do on a daily basis.


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Aligondo Bruce
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What you should do is bring in abstracts of case reports which feature seronegative relapsing lyme disease confirmed by PCR and culture. They're out there. Then say "you''ve been brainwashed by your profession and the US government into being an unwitting accomplice in the worst case of scientific and medical malfeasance since the WWII Nazi doctors". It sounds outrageous, but you have to be there with case reports and scientific studies that totally contradict what these doctors have been told and read. Then threaten to file a lawsuit.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
   

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