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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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50% results and 50% futility in Dr. appt

Discussion in 'General Treatment' started by Shoesies, Jan 6, 2013.

  1. Shoesies

    Shoesies Senior Member

    Well today my friend the GP agreed to meet us at his office to go over my meds and test results. I brought many studies and trials for him to go over including Dr, Lerner's long term antiviral regimin and the studies indicating GcMAF is working for patients. The results portion of the visit was that he agreed with the studies about long term antivirals and prescribed such. He also has heard of GcMAF and actually has a patient that orders herself and he administers her injections. I was so pleasantly shocked to find this out. He feels that at this time I am too weak tyo begin GcMAF but will revisit in three to six months. Sigh.

    Futility - the husband pushed his way into the room while this discussion is going on and proceeds to tell the doc that he thinks some of my symptoms are not physiological in nature. Pfffft that would presuppose that all my test results have been altered by little aliens at the lab all under the control of my pathological mind. So now, the notsoDH insists on me taking the antidepressant as condition for payment on testing and GcMAF. Anyone else have an a** instead of an advocate?

    FML
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Shoesies

    You can always "palm" the antidepressant!

    Sushi
     
  3. Shoesies

    Shoesies Senior Member

    Oh believe me, I will. BUT it saddens me that my friend my GP would even allow such a thing.
     
  4. snowathlete

    snowathlete

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    Difficult situation for the doctor friend to deal with though. If he reacts against your husband that might be worse for you in consequence. It sounds like your doctor friend wants to help you and his knowledge sounds good. That's rare. Not a great situation obviously but I hope the treatment helps. I think either the antivirals or GcMAF are both good treatment options, so if you can only do the antivirals at first, that's still good.
     
  5. Dreambirdie

    Dreambirdie work in progress

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    Hi Shoesies--I am sorry your husband is so unsupportive and abusive. It sounds like he might possibly have NPD--narcissistic personality disorder. You might consider reading more about this and getting some support from the forum I have linked below, which was created for people who are dealing with family members and spouses who have personality disorders.

    The narcissists I have known have been very toxic people--arrogant, extremely self-centered, manipulative, incapable of empathy, with a major attitude of entitlement, and not willing to ever reflect on their own behavior

    Here is a page with a description of narcissistic traits.
    http://outofthefog.net/Disorders/NPD.html

    And here is the link to the forum itself. See if this might be helpful.
    http://outofthefog.net/forum/
     
  6. Sparrow

    Sparrow Senior Member

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    FANTASTIC news about the doctor. That's wonderful.

    Awful about your husband, though. I can't get over that at all. My heart goes out to you with tons of sympathy. I can't imagine trying to navigate all of this when your closest supporters feel that way.

    Do you have signs of depression in addition to the ME symptoms (I know a lot of us do get sincerely down)? I know I've seen some good highlighting the differences between depression and ME in how they present (having a desire to do things and being frustrated if you can't, etc.). Would he be willing to look over something like that? Has he read the IACFSME Physician's Primer? I can't help but feel like if he were better educated about the illness, he couldn't possibly be acting that way. I'm so sorry.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe the antidepressants were to just get rid of your husband. Can always try a small dose and if it works great, if not and u feel sick then make sure your husband cleans it up when u vomitt.
     
  8. ukxmrv

    ukxmrv Senior Member

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    Was your husband always like that? Maybe he is adding to your disease burden and you would be best off without him.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    he could be like most people and dont understand or believe that it is any more then depression. attempting the ad's and not improving would show him that it isnt?
     
  10. Shoesies

    Shoesies Senior Member

    I would like to thank all of you for your responses. All good insights and I add them to what I already know and feel. As far as the antidepressant...will give it a go for a short time. Do not like what I read about this online, time will tell. I know what depression feels like...and I am not depressed, I am pissed off at this illness and sometimes physically overwhelmed with tasks others find normal. As far as the notsoDH, he is and always has been a wonderful provider and very responsible but from the beginning has been verbally abusive and controlling, with a poor regard for women. He has never hit me and he knows better...but I have allowed and covered for this behavior and it now makes my condition worse. When I am able something will be done. He refuses counseling and has for 28 years.

    On the good side, at 12:55am last night my grandson Blaze Josiah was born and I was there to hold him first as he made his appearance. I was so thankful to God that I did not miss this moment. I am now back down until I recover again. GcMAF is our next protocol. Thank you to each of you for taking your precious time and energy to reply to me...believe me...I know what that can cost. To better days.
     
    heapsreal likes this.
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Be very careful with the ADs. Their negative effects can be subtle.
     
  12. peggy-sue

    peggy-sue

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    It's really not a good idea to take ADs when you are not having major clinical depression.

    They are sledgehammers of drugs, poorly understood. They affect and reorganise all your hormone systems.

    Serotonin is NOT the "happy chemical" it is made out to be.
    If it was, ADs would work immediately, not take 6-8 weeks to kick in... after all the hormone systems are reorganised.

    Moods and feelings are hormonal. Think about PMT, think about "roid rage"...
     
    justy and Dreambirdie like this.
  13. Dreambirdie

    Dreambirdie work in progress

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    I have to agree with Little Bluestem and peggy-sue. I have a couple friends who were on ADs. They became dependent on them within a short time period and have been through major *HELL* for over a year, weaning down to get off them. If you are sensitive to medication, as many pwME are, then you should not venture into that dangerous territory of taking ADs just to appease your notsoDH.
     
  14. Shoesies

    Shoesies Senior Member

    Thank you so much for the info. It is hard to fight city hall as it were, while sick as all hello. I am trashing the wellbutrin out of my meds.
     
  15. peggy-sue

    peggy-sue

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    That is NOT a first course AD to be trying.
    (On the other hand, it is one I would considering changing to - if I wasn't so flippin' scared of it.)

    It's otherwise known as Zyban - the first drug that came out to be used for giving up cigarettes - and it made a lot of "normal" folk go round the twist.

    Palm them, put them in your cheek until you can get rid, stuff them down the back of the sofa...!
     
  16. Shoesies

    Shoesies Senior Member

    Kinda makes me want to stuff them down the throat of those insisting on giving them to me. Hah!
     
    Little Bluestem likes this.
  17. peggy-sue

    peggy-sue

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    ;) Don't put them in the goldfish bowl...
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    when u see your doc next just say to him u didnt want to take them until he could test for the chemical imbalance they correct and would like a test to measure your serotonin and or noradrenaline levels first. he wont not what to do as there is no such test??
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not against ad's but they shouldnt be forced down someones throat. also its trial and error for the right med too plus most docs dont understand we need alot lower doses then normally prescribed. They dont just help depression but can help energy/cognitive stuff as well as help pain. if ones isnt comfortable taking them then they shouldnt.
     
    merylg likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    I personally think it would be bad to go trialing two new things like ADs and antiviral at the same time as if you get side effects or even improvement , you wont know what is doing what.

    Im so sorry to hear what your husband did.. that must of left you feeling very betrayed. I had a new boyfriend in the past who instead of supportin me when I got a bad doctor who wanted to put me onto psych drugs and that.. he instead turned around and then backed the doctor (a doctor who believed all ME/CFS cases were psych illness). He was much like your husband sounds so I did end up taking those pills to show him they werent going to help but only lasted 3 days on them as they affected me horrendously and sent my functional level much much lower down (to the point where I was even then unable to pour hot water into a cup. I couldnt do a thing on them) and nearly sent me nuts. I ended up leaving that boyfriend right after that.
     

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