Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Really need you guys opinion re: upsetting doctor situation!!!

Discussion in 'ME/CFS Doctors' started by Gingergrrl, Jul 22, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I want to run this by you guys before I make a decision how to proceed. I saw my naturopath (ND) this morning who I've been seeing since Feb and in general have a good connection with.

    To give the background: Last week I saw Dr. Kaufman at OMI and had a great experience and he tested me for all the viruses, etc, and I am awaiting the results. As soon as I got back from long road trip to OMI, I e-mailed my ND and told her about the whole visit and sent a copy of everything Dr. K tested me for. We frequently correspond by e-mail so this was normal. She never responded so last night I e-mailed her to confirm that she received my prior e-mail and that just in case she didn't, I'd bring her a hard copy of what Dr. K tested me for.

    So I went to my appt today very excited (thinking she'd read my e-mail and would be proud of me for all my efforts to get to OMI and my continued 100% compliance with her food & supplement plan.)

    Instead she had an angry tone (unlike her) and said, "I didn't read your e-mails b/c I was on vacation." I remained calm and said, "No worries and I brought you a copy of what Dr. K tested me for." She looked at the copy and said, "You do realize that I have already tested you for most of this?"

    At that point I struggled to remain cool b/c I had BEGGED her for months to test me for viruses other than EBV and she would not do it. She said the natural anti-virals would remain the same so the tests were not necessary. I asked her to test my NK functioning and she said it was not necessary b/c she "Already knows it is low." I asked her to test for Lyme & co-infections (even though I do not think I have it but just to be sure) and she said, "Your symptoms do not meet the profile of Lyme" (which I agree with) but again she did NOT test me.

    I asked her to test me for ASO (strep titer) due to unresolved tests/questions I had since 2010 and she said no. I asked her to test my blood clotting time b/c I had unexplained bruises on my legs and she said, "Let's just watch and wait." I would not have driven 6-7 hrs to OMI if I could have found a local Dr to test me for these things!

    So I challenged her on this and said that other than the CBC, Vit D, and 3 of the 5 of the EBV tests, everything that Dr. K tested me for was new. She started to argue and said that she had tested me for these tests. So I argued back and said that if this was the case, then where were the results b/c I have never seen them and I spent an entire week putting four yrs of med records together for OMI including EVERY test that she ran on me.

    She then changed her story and said, "Well, I recommended those tests for you but you were resistant." At that point I started to cry b/c I felt that she was either lying or questioning my integrity. I told her that I BEGGED her for those tests and if she would have offered them, I would have jumped at the chance. (I was willing to swear on a bible in court, I am that confident of this.)

    I (unfortunately) was still crying at this point and told her that I have built my life around her supplement & food plan and have complied with everything she has ever asked me to do. I have spent thousands of dollars on treatment this year and have done everything asked of me by every single doctor.

    I was so hopeful after seeing Dr. K and thought that she would share in my hope and they would collaborate. I did not expect her to have the knowledge of a CFS expert nor him to have the knowledge of an ND and that they would compliment each other and I'd the attack the virus with both prescription and natural anti-virals.

    So here is my dilemma:

    1) Do I stop seeing her b/c I no longer trust her and feel that she has questioned my integrity or do I continue b/c her skills/knowledge are very good and she has (literally) virtually cured my GI issues. She has helped me, thus far, more than any other doctor and if my goal is to get better, can I just let today go and not throw away a Dr who could still help me medically?

    2) Do you think she was just having a bad day or that she felt threatened by Dr. K's expertise and had some kind of defensive transference reaction? But if so, do I just let that go?

    3) Do I e-mail her and try to discuss it and depending on how she responds, make my decision then? I am really conflicted b/c her actions today were out of character but I also don't want to do something impulsive.

    My husband said he would be done with someone if they had questioned his integrity and that I should make a decision and not dwell on this and allow her to upset me so much. But he is healthy and not in a desperate place like I am. I trust the supplement & food plan that I am on and need someone to monitor it (and it's not like I'd immediately find some other ND with availability so close to where I live.)

    Thanks for any feedback and sorry this post is so long!!!
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Gingergrrl43

    In my experience this is not an unusual response. These 2 branches of medicine are not known for trusting and respecting each other! And even if they regarded themselves as "colleagues" it is difficult to find practitioners who are willing to work together.

    My thought would be, if you find this NP helpful (and can overlook this unfortunate interaction) go to her for the type of things she has helped you with in the past and keep quiet about Dr. Kaufman. Or, if you feel that this interaction has created a permanent barrier between you, consider moving on.

    This is sad, but not unusual.

    Best,
    Sushi
     
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  3. minkeygirl

    minkeygirl But I Look So Good.

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    I recently had a run in with my PCP (she ripped me a new one and threatened to throw me out of the office). When I told my NP she said it sounded like her ego got in the way and she should be happy I found someone (my NP who could help me). I changed PCP's.

    I would have a hard time letting things go. I personally would not say anything to her and look for another NP (she's not the only game in town) and then when you find someone you like and TRUST change doctors.
     
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  4. Esther12

    Esther12 Senior Member

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    I think that there's a lot more quackery around than most people realise - if a doctor seems dodgy, I'd avoid them.

    PS: Personally, I reckon that trying to donate to good research can often be a better use of money than a lot of these doctors. There are a few worthwhile on-going projects, but I thought I'd promote Lipkin's work here: http://www.microbediscovery.org/

    Hope that doesn't seem crass.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Sushi and @minkeygirl for your feedback. At this point, I don't feel that if I continued seeing her, I could keep quiet re: Dr. K b/c she knows I have a follow-up appt with him next week and that he will be putting me on an a/v.

    Ironically she is not opposed to me taking an a/v and said she thinks it could help and has many ideas how we move forward to compliment it with other a/v supplements or immune mods. She actually believes in ME/CFS and has some knowledge of it which is why I am so conflicted.

    If she were a random PCP, or someone I only saw 1-2x who did not believe in ME/CFS, I would move on in a second with no hesitation. But I have seen her since Feb and this was out of character.
     
  6. Scarecrow

    Scarecrow Annie Gsampel

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    Hi, Gingergrrl43. Sorry you've had such an upsetting experience with a doctor who you trust and respect. They're hard to come by.

    If you think that she may have been having a bad day, you'll never know for sure unless you giver her another chance. Doctors, after all, are human, too. It seems that she may be feeling threatened and defensive and just reacted badly.

    You obviously value her. It can be hard to put an upset aside but do you think that you could suspend your own feelings until you know how the situation truly lies? Forgive now, make up your mind later.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @Scarecrow I think you captured the conflict that I am feeling b/c she was a doctor that I trusted and valued and if she was not, I would easily move on.

    I think she felt threatened and got defensive and if I could at some point before I see her again (in 3 wks) discuss this with her (even in the most basic way) and she responds appropriately, I could move on and work with her on the issues that I know she can help me with.
     
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  8. minkeygirl

    minkeygirl But I Look So Good.

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    I disagree with @Scarecrow It's one thing to have a bad day. It's another to not take ownership of her decisions. She had the opportunity to say, maybe I'm wrong or misunderstood and she did neither. If she believed in A/V's and immune modulators, why weren't you already taking them? Time means a lot with us.

    I would see her for your GI issues UNTIL you can find someone else. If you want Dr. K to deal with your ME/CFS and her your gut that is fine, but do not discuss what you do with him. She obviously has a problem. Unless she apologizes to you but that has to come from her. You did nothing wrong.

    I asked my PCP to run some labs so my NP could help. My PCP ripped me a new one twice about this blaming me. All she had to do was say no. Done deal. That was it for me.
     
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  9. AndyPandy

    AndyPandy Making the most of it

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    Agree that it seems she felt threatened, got defensive and may also have been having a bad day. If it were me I would do nothing now or before the next appointment and just wait and see how things are at the next appointment. Better to give it some space and then deal with it in person.

    If it is too difficult to find another ND, I would try to put this behind me and use her for what I need and for what Dr K doesn't cover. I wouldn't necessarily confront her about her behaviour. Just reinforce that you appreciate her help in the past and would like to continue to work together in conjunction with Dr K's protocol for you.

    Best wishes
     
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  10. Scarecrow

    Scarecrow Annie Gsampel

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    Perhaps wait a few days to a week until the adrenaline and emotions subside and you can think about it more dispassionately. Then test the water with an e-mail. It may take an apology on your part, even though you have nothing to apologise for. It all depends what you think you have to gain and what you could lose. You know her better than anyone else here, so you'll know what to do when the time comes.
     
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  11. Scarecrow

    Scarecrow Annie Gsampel

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    One more thing. If you do decide that you will apologise, you're not admitting fault. You're just soothing ruffled feathers. You're not giving in to anything. You're in control. You can walk away whenever you want, if you're not getting what you need (and what you are paying for).
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Thanks guys and really good feedback and giving me a lot to think about. I definitely am not contacting her now while I am upset and will either wait until closer to or during the appt if I decide to go there.

    She is treating me for more than just GI issues and in general is pretty well-rounded in her knowledge. The natural anti-virals that she had me on were honestly the best I had ever felt since CFS (but I stopped them due to GI issues and then completely de-compensated back to square one.) So she worked on my GI stuff for months and ordered all kinds of special test kits for me. Now my stomach is able to take the natural anti-virals again (almost back at the full dose) and I credit that to her. The last two days I have been able to drive which I have not done in months and I can only credit this to the natural anti-virals (b/c I have not started anything from Dr. K yet.) Granted you are sitting when you drive and I still get very short of breath w/walking or any exertion but I literally could not drive for months, so something is different.

    Also, even though she said she endorses prescription av's (like Valtrex, Famvir, etc) I don't think she has any experience prescribing them herself as this is not her area of expertise. So I don't think she was holding out on me, I just think she uses other natural methods. She tried at the end to explain to me that she and Dr. K were on the same page but at that point the damage was done.

    I think maybe she wanted to be the one to "solve" this herself whereas to me it takes a village and I am grateful to everyone for contributing their own piece of the puzzle. To me it is not a competition but maybe she viewed it that way?

    Also, someone made a really good point to me (not in this thread) that she is doing paperwork for my short-term disability claim and they are requesting more info from her so if I abruptly stop seeing her, she will stop doing the paperwork, and the last thing I need is to screw myself over financially b/c of this.
     
  13. AndyPandy

    AndyPandy Making the most of it

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    In view of the fact that she is currently doing your disability paperwork I would definitely keep seeing her and try and move past this incident.
     
  14. IreneF

    IreneF Senior Member

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    I'd stick with Dr. Kaufman. I've met him. He has a good education and is very professional. Before he came to Open Medicine he had an AIDS practice in NY.

    Find someone else locally. You said you spent thousands on your ND's supplements? She's defensive when you go to a different doc? Doesn't give you test results? Upsets you so much you burst into tears?

    You must keep all your docs up to date with the drugs and treatments you are taking, for your own protection. These things can have harmful interactions.

    Ultimately,this is a business relationship. You are paying her for a service. If she does not behave professionally you have the right to move on.
     
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  15. xchocoholic

    xchocoholic Senior Member

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    I'd definitely stick with her. We're complicated patients. So there's an enormous amount of variables she has to keep in her head when she sees you. She needs to be aware of possible negative reactions in your treatment too.

    After she's seen you, she'll be seeing other complicated cases and need to remember their data.

    I'm guessing her attitude today was just a reflection of how complicated we are.

    Tc .. x
     
  16. Dreambirdie

    Dreambirdie work in progress

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    @Gingergrrl43 From what you describe, I think she was obviously feeling her authority threatened by your new and positive experience with the MD. She acted a bit territorial, as if you were "her" patient and she didn't want some other guy interfering in her plan for you. Unfortunately, power issues are common in the helping professions, though in this case she really went over the top at demonstrating that. REALLY over the top!

    Apparently ego defensiveness, insecurity and the need to be your one and only health advisor is how her weakness and power issues manifest. She felt disempowered by your seeking advice elsewhere and that pushed her buttons.... and her very unprofessional behavior in the light of that pushed your buttons. I think you were expecting better behavior than that, (as you should!) and she really let you down on the human level.

    That's hard, because we want to have a good feelings between us and those who are helping us deal with this nasty illness... and finding people who are good at that is like finding the missing Malaysian jet liner.

    I think you're going to have to decide if you can accept her very flawed personality issues and separate those from the good advice you get from her. Maybe you'll have to push this incident aside and go on seeing her, keeping in mind that she has unresolved issues that are clearly HER problem, not yours. Just knowing that might help you keep a cooler distance in your relationship with her. Or maybe you will at some time be able to tell her (briefly) how that incident made you feel and what you would like and expect from her, if you are to continue working with her in the future. Or maybe you can just cut your ties with her and find someone else who doesn't have issues like this.

    If you let it rest and stew on the back burner a while, I think it will become clear to you what the right thing to do will be. Good luck with it. :hug:
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @IreneF I wanted to clarify a few things. First, I am absolutely 100% sticking with Dr. K and OMI and was never debating that. He was incredibly professional in our initial consult and I have no doubts about him. It is just that it is a 6-7 drive for me to OMI and I still need a local practitioner and my ND has been serving as my PCP and has been very involved in my overall care.

    Also wanted to clarify when I said I've spent thousands on medical care this year, I meant for everything (endocrinologist, cardiologist, ND, OMI, blood tests, prescriptions, supplements, etc) and didn't mean that I spent thousands on supplements alone!

    Lastly (and I know now it sounds like I am now defending her which is not my intention!) I can be very sensitive and easily in tears over things that another person may not (especially re: this illness and how hard I have worked to get better.) If it is something with no emotional connection (like if a mechanic accused me of something re: my car, I would be able to stay calm and appropriately advocate for myself in an objective way.)
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    Thanks guys, and you are posting faster than I can read! Also I want to thank @SOC who last night taught me how to quote multiple posts in my answer (which I can now do!)

    @xchocoholic I agree with you in the sense that she sees a lot of complex patients (with CFS, Lyme, fibro, etc) and I do not expect her to keep all of the variables of each case memorized in her head. If she had said, "Oh, I thought I tested you on some of these things, but maybe I am wrong?" I would have left it alone and not gotten defensive. But when she was so indignant about it and then flipped the story that... well, she had wanted to test me but I declined, it got too ridiculous for me not to respond b/c I felt she was questioning my integrity (and then my emotion took over which I regret.)

    @Dreambirdie Thank you and I agree with your entire assessment. The weird thing is that she knew I was going up to OMI (it was not a secret) and she sent Dr. K a summary of her treatment with me and seemed happy to do so. She had seemed excited that I was going and expressed wanting to consult with him in the future to learn more about his approach to CFS. That is why her reaction today was so surprising to me.

    I guess seeing how thorough his tests were triggered something in her that I was not expecting (and you are right that this is her issue not mine.) Because once she saw how upset I was, she still couldn't drop it like she had to be right. I am a social worker (before I became ill) and I often expect that doctors will respond in the way that I would in my profession and frequently get disappointed when this is not the case. I have never argued with a patient about something like this (even if I believed I was correct) b/c it serves no purpose other than further upsetting the patient and wasting time going in circles and eroding trust.
     
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  19. Dreambirdie

    Dreambirdie work in progress

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    I can empathize. Cuz I too can be very overly sensitive about some of these things. But.... at the same time... I am now able to recognize mature, professional, adult behavior when I see it, and this WAS NOT IT. So please, just don't beat yourself up for something that was clearly and absolutely not your fault. The person who blew it in this situation was clearly Doctor Naturopath. You just have to decide what you're gonna do about it.


    YES. That's the crux of it right there. You have more maturity and professionalism than she does. She don't got it, and might never have it. Can you deal with that? is the big question for you. And how? will you deal with it.
     
    Last edited: Jul 22, 2014
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  20. Butydoc

    Butydoc President

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    Hi Gingergirl43,
    Y
    I personally think you should consider finding another ND. CFS/ME is an extremely complex disease and requires health care professionals working together to accomplish the best outcome. Egos have no place in the treatment of this disease. I feel it is extremely important that all your doctors are on the same page and understand what treatments you are undergoing so that one doctors treatment doesn't interfer with another's. I would hate to see a physician making a mistake because of their ego preventing them from seeing the whole picture.

    Best,
    Gary
     
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