August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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help! My Dr is in the stone ages...

Discussion in 'ME/CFS Doctors' started by kelly8, Aug 4, 2017.

  1. kelly8

    kelly8

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    Hi,
    I had an appt with my Dr yesterday and I need help figuring out how to get someone to order these tests. I need to get titer testing done and want to get the ebv and coxsackie virus work up done. My Dr is refusing to order these and I even brought her the info from here about Dr chia and how to order and read them and she still will not do it.
    I asked her to look into if anyone in our area could and she said no one in our area could or would. I live in the Boston area and you would think that someone in this area where we have various university's and medical schools would be willing to run theses tests.
    As I understand it you need to have a Dr run these tests, right? I know i have a problem with my immune system as I've had wierd viruses 3-4 times a year since i was a child. I was exposed to coxsackie as an infant and was extremely sick. In 2008 i caught something that took almost two years to go away and started my massive fatigue. I ended up with a hernia surgery as a complication of that illness.
    I'm concerned because each time I crash my symptoms are getting worse and worse. Right now I'm functional somewhat but I'm afraid at some point if I don't take care of this that I won't be.
    Does anyone know of a Dr in the Boston area who deals with this? Are there any Drs who are worth it that can do skype appts? I'm currently using dr. Amy yasko which is a great starting point for helping with my methylation but I want to deal with this virus issue because I know it is crucial to my health.
    Thank you for your advice!
     
  2. Alvin2

    Alvin2 If humans were rational...

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    I don't know anyone in your area but i have found it very wise to feel out doctors before providing information or requesting tests, if they are the type who react badly to patient knowledge then its best not to challenge their "authority" and find someone else instead.
    I assume your referring to your GP, can you change this to someone else?
     
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think your doctor is probably well up to date. Doing these tests will tell you nothing useful. Viral titres tell you if you have met a virus in the past and you probably have. They rarely tell you anything more. To be honest I would give your doctor a break and focus on your symptoms so that the doctor can think of what is sensible to recommend.
     
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  4. kelly8

    kelly8

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    @Alvin2 thank you, I am trying to find someone who thinks a little more outside the box. My Dr is very smart and compassionate but is not willing to dig deeper. I was hoping someone here might have had experiences with Drs in my area that might look at things a little differently. It seems like some people on this site have had success with treating chronic infections and this is something I feel might be a factor in improving my health. At least she was interested enough to look at the stuff I brought her but that doesn't help me get these tests ordered...
     
  5. Alvin2

    Alvin2 If humans were rational...

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    I don't know much about immunity beyond the basics so i would trust that Dr Edwards knows what he is talking about, but i do have a lot of experience with doctors who are insistent that they are right even when their explanations make no scientific sense or are contradictory. In the end if you have ME/CFS its not likely you can do much about it at this point, but if you have some sort of immune condition thats treatable perhaps you should try and get a referral to an appropriate specialist and let them run the appropriate tests.
     
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  6. kelly8

    kelly8

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    @Jonathan Edwards , I believe I have given my Dr a break. She has been seeing me for the last 6 years. The only reason I had any improvement at all was when I started supplementing myself with various b vitamins. I even put up with the you need to see a psychiatrist bit. And I followed her advice each time. When she started telling me that there were no answers and I was just going to have to live with getting constantly worse was when I decided to do something myself. As far as I'm concerned the day I give up my hope is the day I just lay down on the pavement and die. I have heard good things about the work that has been done by Dr chia. I'm sorry you don't believe in the work they have done.
     
    Last edited: Aug 4, 2017
  7. TrixieStix

    TrixieStix Senior Member

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    To be fair the breadth of testing my ME/CFS specialist ran on me was way outside the scope of what my primary care doctor could ever have been expected to order for me (viral titers were part of it & I had many elevated IgM titers for a few different viruses but I do not have active infections, it just means I was infected in the past). I'm pretty sure that when a doctor orders a test they can not just simply order the test and expect insurance to cover it. I think a doctor must enter specific diagnosis codes along with the testing in order to justify the tests and get insurance to cover it.
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I don't think being honest has anything to do with giving up hope. I spent most of my life looking after people for whom I could do nothing while working hard on the hope that one day we could - and one day we did. Dr Chia has not produced any convincing evidence of effective treatment. If known viruses were involved it would have become apparent by now. When you find the answer to something in medicine it becomes obvious to everyone pretty quickly because everyone else finds the treatment works. Hundreds of physicians have tried anti-virals and most have given up. We have not seen any new research on viruses other than negative data for about five years now.
     
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  9. Barry53

    Barry53 Senior Member

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    The saying goes "Where there's life there's hope", but I prefer to turn it round (as I think you do from what you say) to "Where there's hope there's life" :). I would be very surprised if @Jonathan Edwards is wrong in what he says, but there are lots of other hopeful things going on at the moment, not least of which the real possibility that attitudes to ME might be starting to change.
     
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