primary care doctor skepticism -- try to educate or move on?

[sensing progress]

Hi All,

I have a primary care doctor that refuses to make a ME/CFS diagnosis or refer me to a ME/CFS specialist. He thinks it's a throw-away diagnosis and that seeing a specialist would just be wasting my money. I would just find a new doctor but I think he is actually a good PCP otherwise. Caring, listens, just not a "believer". So I'm wondering if I should try to convince him of the biophysical abnormalities (and treatments) of CFS. I suspect all he knows is what little he's heard since graduating med school 15 - 20 years ago. Is there a good, concise document or paper that I could show him that might change his opinion? I was considering asking him to watch Anthony L. Komaroff's (Harvard M.D.) recent presentation The Latest Research on CFS, which convinced my (formerly) non-believing relative with a science background.

Any suggestions?

 

[dsdmom]

My gut says to move on, but that's only because my experience has taught me that. I've spent way too much time with doctors who wouldn't 'believe' the data no matter what - just because I thought they were good otherwise. Finally I left and couldn't be happier with my choice.

 

[taniaaust1]

Any chance you can start seeing two different doctors? For ages I was seeing different doctors for different issues I had cause i couldnt find one for everything. Maybe you can get a second doctor, just for CFS stuff and for referal to a CFS specialist. I personally think its very important to see a CFS specialist at least once as they are very knowable at ruleing out things which can present like CFS and also help you to manage it more, fill out disability forms if needed etc. You need someone able to back you up in all these kinds of ways.

Unless you have an open doctor, it can be near impossible to educate them and just uses up a ton of your energy. Thou if you wait a couple of months, maybe they will have approved XMRV test out by then and you may be able to to get your doctors attention over that.

 

[floydguy]

PCP

My advice is to find a PCP who is willing and ABLE to work with you. The complexities of CFS are so beyond my PCP he is useless. He is very nice but taking money for seeing me borders on fraud. I only go once a year now.

I actually have a top CFS doctor but the problem is that he doesn't really treat - I check in with him once a year.

The bottom line is that my health issues are not being treated or dealt with at all. The challenge is finding a PCP who is any good and taking new patients.

I see a good PCP as essential. Someone who guides you through different specialists and is willing to try different things. But if they don't acknowledge or understand CFS then there is no way they're going to be effective.

One warning I have is that I've noticed that many seem to think CFS is all about not sleeping or stress or something like that. They really don't understand the neuro/immune issues.

 

[serenity]

i'm having a similar experience, very good doc who just doesn't seem very pro-activea about my illness. i'm having a very hard time deciding what to do as well. i think i need a second opinion. my doc has given me a fibro diagnosis, but hasn't run any tests or anything. he also refuses to do anything about my hair loss which i am pretty sure is due to meds, telling me there is no reason to use anything other than Wellbutrin or Lexapro as all SSRI's are the same & all SNRI's are the same. ???!!!
this doesn't sound right to me, but this docs credentials are beyond comparison & i like him as a person. he has helped me, & it's making the decision to move on very difficult.

 

[*GG*]

Hi All,

I have a primary care doctor that refuses to make a ME/CFS diagnosis or refer me to a ME/CFS specialist. He thinks it's a throw-away diagnosis and that seeing a specialist would just be wasting my money. I would just find a new doctor but I think he is actually a good PCP otherwise. Caring, listens, just not a "believer". So I'm wondering if I should try to convince him of the biophysical abnormalities (and treatments) of CFS. I suspect all he knows is what little he's heard since graduating med school 15 - 20 years ago. Is there a good, concise document or paper that I could show him that might change his opinion? I was considering asking him to watch Anthony L. Komaroff's (Harvard M.D.) recent presentation The Latest Research on CFS, which convinced my (formerly) non-believing relative with a science background.

Any suggestions?

Tell him that it your money and you will "throw" it away if you want! Not his business, it's a free country!

I take it you need a referral to get insurance to cover the visit? Pay out of pocket for a good doctor who will diagnose you? Can you change insurance coverage? and last but not least Check out the Co-cure site for a good Dr?

 

[aquariusgirl]

floydguy
who is the top CFS doc who does not treat?

 

[Victoria]

I agree with sickofcfs's point.

You need to find out whether your Dr does think you're ill (but doesn't believe in CFS), OR whether he doesn't think you're ill (at all).

A good doctor/patient relationship is important.

I have a wonderful GP. He is a great listener, respects my knowledge/opinions and understands my reluctance to take more drugs. He also appreciates my financial limitations. And most importantly, he refers me on to a specialist (if he wants confirmation of a diagnosis & more advice on the correct treatment).

I keep seeing him also because he seems to have an open mind. I dread the day he might retire, or the day I have to move & might be forced to change doctors.

It's good to have a primary doctor who can co-ordinate your medical treatment & specialists.

On the other hand, if my GP failed to meet my expectations or attend to my health concerns, I wouldn't hesitate to look for someone new.

When you have chronic illness of any kind, you need the best support you can find (& afford).

 

[ixchelkali]

The Canadian Consesus Guidelines give a good overview and are aimed at clinicians. But since it doesn't come from "on high" in the U.S. medical establishment, it may not convince him, even if he would read it.

http://www.cfids-cab.org/cfs-inform/CFS.case.def/carruthers.etal03.pdf

 

[serenity]

Tell him that it your money and you will "throw" it away if you want! Not his business, it's a free country!

this is kinda how i am feeling lately. i get the feeling my doc thinks i'm wasting my money, but it's mine to waste & i am not ready to give up.

 

[*GG*]

i'm having a similar experience, very good doc who just doesn't seem very pro-activea about my illness. i'm having a very hard time deciding what to do as well. i think i need a second opinion. my doc has given me a fibro diagnosis, but hasn't run any tests or anything. he also refuses to do anything about my hair loss which i am pretty sure is due to meds, telling me there is no reason to use anything other than Wellbutrin or Lexapro as all SSRI's are the same & all SNRI's are the same. ???!!!
this doesn't sound right to me, but this docs credentials are beyond comparison & i like him as a person. he has helped me, & it's making the decision to move on very difficult.

Yes, this doesn't sound right! Everybody is different, and we all can react differently to different meds. I know that I have tried some anti-depressants for sleep and some have worked for me and some haven't, so if they are all the same, why is that? Perhapds you have had a similar experience, and raise this with him and have him explain?

 

[glenp]

I am 60. Some of you may know that I had symptoms (light sensitivity) etc as a child. As an adult I was treated for depression and panic attacks (turned out to be dysautonomia) It wasnt until in my 50's that my gp sent me to a new psychiatrist who said I had CFS and needed a referral for a proper diagnosis and treatment. My GP said "no, just keep seeing the psychiatrist" It was at that time that I went to a walk in clinic where I saw an oby. who on hearing this said "I'll be your doctor" He referred me on to Dr. Bruce Carruthers. He is now my gp, but claims to know nothing of CFS and his interest is oby, he wouod like for me to find help. He will do whatever he can but CFS is not his interest, oby is, so it is only out of his kindness that I am his patient. He has referred me to many different doctors, which each seem to help me in some way. My gp says to "bring" anything back to him and he will check it out for me. He insists that when I have a bad migraine attack to come in and he will take care of it, rather then going through the hoops anywhere else. He has given me some meds that he hasn't wanted to, saying "you're on your own" so i cannot expect more from him, I feel fortunate to have him. I have had TOP doctors in the past, one giving me gentamicin and now I wonder how much damage that drug did to me. So I feel sometimes top doctors maybe do not have all of the answers, especially the ones that say they do. I have found through my experience that it has been the doctors that "don't know" to have been the best. As Dr. Carruthers said "you know your own body" I try and foucus on me and my health and not take what the doctor says as to be truth, but maybe guidance, and guidance from many can help. I question all side affects and how it could make me worse.

glen

glen

 

[grant107]

I have been going to a GP who doesn't say he believes in CFS or not, he just ignores it. He even tells me I am healthy. I thought it didn't matter because no one could help me anyway. Now that I know I have xmrv my thinking has changed. I tried to talk to him about xmrv and he just looked at me with a stony silence. I was so aggravated I feel I must find another doctor. He did go along with ordering the test for xmrv but when it came back positive he said he did not know what that meant and did not discus it with me.

 

[serenity]

Yes, this doesn't sound right! Everybody is different, and we all can react differently to different meds. I know that I have tried some anti-depressants for sleep and some have worked for me and some haven't, so if they are all the same, why is that? Perhapds you have had a similar experience, and raise this with him and have him explain?

thanks Ggingues - i have asked about this, his opinion was the same - that they would all cause me hair loss. i believe i am going to see another doc for a 2nd opinion. i just know this isn't right - it can't be. i want to keep my doc, i'm lucky to have him - but i need to see someone else about this.