Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Whats left to ask my Dr for?

Discussion in 'General Treatment' started by sickntired771, Apr 10, 2015.

  1. sickntired771

    sickntired771

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    I have tried LDN, stimulants, coQ10 and nothing seems to help at all with my energy levels. I don't even know what to ask my doctors for anymore. They have no suggestions and unless I bring something up to try out they kind of shrug and say sorry to me. What should I try? I am so tired it hurts :(
     
    oceiv and LivingwithFibro like this.
  2. LivingwithFibro

    LivingwithFibro Senior Member

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    Hang in there! Big big hugs.

    At least they're honest and aren't experimenting on you. It's good when a doctor can admit they're clueless.

    Where are you in the US? Perhaps you can book an appointment with an experienced naturopath or functional medicine doctor. Some of them also consult over Skype.
     
    oceiv likes this.
  3. Mary

    Mary Senior Member

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    I totally agree with LivingwithFibro. Your best bet would be to find a naturopath or functional or integrative medicine doctor, and also educate yourself as much as possible.

    There are so many possibilities for fatigue: weak adrenals (adrenal glandulars helped me with this); hypothyroid, low B12, low folate, MTHFR SNP, gluten intolerance, low stomach acid (prevents absorption and utilization of nutrients), low B6, toxins, low potassium, and the list goes on. A good doctor should help you explore all these possibilities. It doesn't sound like they have.

    One thing that helped me was a chiropractor who does muscle testing. He helped me with weak adrenals and also got my digestion sorted out, both huge cause of fatigue. Methylcobalamin, methylfolate and potassium also helped a lot. It can get complicated, and if ou haven't already, look at Freddd's B12 protocol: http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/
     
  4. SOC

    SOC

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    Are you pacing properly? That would be the first step. If you can, it would be a good idea to see a top biomedical ME/CFS specialist -- Montoya, the docs at OMI or INIM, Chia, KDM, not the biopsychosocial so-called specialists who will tell you to take antidepressants, and get therapy (CBT) and exercise (GET).

    The best treatment for ME/CFS seems very individual at this point in time. What works for some doesn't work for others. It takes a doctor very knowledgeable about the condition to sort out what is likely to work for each patient.

    Other treatments that are working for a large number of (not all) patients are thyroid meds (many of us are T4 or T3 deficient), treatment for various forms of orthostatic intolerance, beta-blockers or calcium-channel blockers, antivirals, Equilibrant, and for some, antibiotics for Lyme and other tickborne illnesses. But it wouldn't make sense to try any of those treatments until you have evidence that you need them, which is where the experienced doctor comes in. :)
     
  5. sickntired771

    sickntired771

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    I did feel better on doxy but it was awful on my stomach. As soon as I stopped I started feeling weak again. I will inquire about thyroid though.
     
  6. CantThink

    CantThink Senior Member

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    I think you wrote the other post about exercise/weight gain... If so (and I'm not having a brain fart lol), combined with what you've said here, I'd really double check what's going on with your thyroid and perhaps also adrenals (and vitamin/mineral levels if possible). Stop The Thyroid Madness is a good site, plus Thyroid UK forum (members from outside the UK too). One can be subclinically hypo thyroid, for example, and feel dreadful but be told they're fine by doctors because the lab results fall just in range.
     
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  7. drob31

    drob31 Senior Member

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    There's always more tests to be done and more things to try. When I think about the mind boggling number of things that can be tested, I don't think anyone has ever had all of them done.

    I agree with the sentiments about thyroid. Although, a huge contributing factor to thyroid issues if adrenal issues. Have you tested your cortisol levels and/or done a 4x saliva test? I know allot of people are low and do well on hydrocortizone or cortef.
     
    sickntired771 likes this.
  8. *GG*

    *GG* Senior Member

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    Just responding to you here. I had this same dilemma once finding a supposed specialist. I asked for Valcyte and he prescribed it!

    GG
     
  9. sickntired771

    sickntired771

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    I am having those bloods run. How are you doing on Valcyte ggingues?
     
  10. *GG*

    *GG* Senior Member

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    Oh, sorry that was way back in at least 2008, for 2 months, didn't seem to do much for me, so I quit taking it!

    GG
     
    sickntired771 likes this.
  11. digital dog

    digital dog Senior Member

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    Have you had your thyroid antibodies checked?
    T3
    Armour thyroid
    Thyroxine
    Testosterone
    DHEA
    Lots of different herbs
    Start VERY low
     

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