The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Doctors Views on Things Written about on PR

Discussion in 'General ME/CFS Discussion' started by Jennifer J, Feb 3, 2016.

  1. Jennifer J

    Jennifer J Senior Member

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    Hi, Everyone.

    I'm finally going to see a doctor tomorrow. Excuse me, I'm struggling for words. I was wondering do "mainstream" doctors believe in the things that are written about here in PR, such as: methylation, detox, molybdenum and manganese supplements, supplements in general, enteroviruses - coxsackie...

    I don't want to mention these things if it will cause things to go in a direction that wouldn't be to my benefit.

    I won't have the energy to reply to any questions tonight. I was just wondering, because I'm out of the loop with a lot of what is understood and not (as in believed by and not believed by most doctors). I don't want to find out how doctors in general may think, like I did when I went to the ER and in my fatigued state said I had MCS. Won't say it in those words again.

    I'm hoping for a less foggy day tomorrow and a good relationship forming with a new doctor.

    Thank you everyone for your support, and for your knowledge and experience that you share on Phoenix Rising.:)

    Edit: By the way, if I tell him I'm so foggy, cause I am and more so than usual, is that a no-no to say? I guess I could blow it off as I haven't been sleeping due to my medical issue I'm seeing him for. Thoughts, anyone?
     
    Last edited: Feb 3, 2016
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  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Most doctors are not likely to know about or take these things very seriously. There are exceptions of course.
    I think that there is a recent thread on what to tell a new doctor. Generally, I think most of us find that describing our symptoms without telling the new doctor our ideas about them, works best. Unless you know the doctor and how they work.
    Foggy, is sort of ME/CFS-speak--might not be understood. You might rather say something like "problems with concentration, memory," or however you could objectively describe it.
     
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  3. Kati

    Kati Patient in training

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    Methylation and its protocols: alternative medicine, not mainstream, not proven
    Detox: alternative, not medicine concept.
    molybdenum and manganese supplements: a general multi-vitamin is what's recommended in mainstream medicine.
    Supplements in general: not proven, money spent for the toilet
    Enteroviruses: real but there is no proven treatments in mainstream medicine.


    Physicians will be able to help you for specific symptoms: sleep, diagnosis, hormones, disability.

    It is best that you develop a good relationship with a local physician, and if able to consult with ME expert for Me related issues
     
    Last edited: Feb 3, 2016
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  4. taniaaust1

    taniaaust1

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    One can get the kind of reaction I figure you got at the ER over MCS any where even when there are in some places which have great government hospital policies regarding how patients with this should be treated. How you get treated when you mention things you have, often all will depend on what that individual dr you are doing with thinks on the subject. eg even telling many doctors you have CFS can get a shocking response. MCS should like CFS be a recognised illness and in fact MCS is a recognised symptom of CFS.

    As a doctor is likely to give drugs.. it is always important if you have a problem like MCS to mention it. They need to know that you are more likely to react.

    All those other things you mentioned "methylation, detox, molybdenum and manganese supplements," I wouldn't bring up to an ordinary dr as they aren't very recognised..

    Any doctor you hope to have a good ongoing relationship with, you should feel comfortable sharing your symptoms with that dr in whatever is the best way you can put it. Patients shouldn't be expected to be able to medical speak and usually do explain things in their own terms for how they feel. Its hard enough to get through an appointment without trying to use medical ways of describing things. You should be able to say to a dr that you have a foggy head if that is how you feel. Any decent dr who doesn't understand will just then ask you to then explain it more.

    generally it is usually helpful to have a CFS doctor but then also have a normal general dr who you don't have the expectation to know much about CFS or to advise much around this and if you have CFS issues go to the CFS doctor.
     
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  5. jimells

    jimells Senior Member

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    The CDC itself acknowledges that nearly all doctors consider "CFS" to be "psychological", and my personal experience certainly confirms that. My illness includes POTS, and I get better results from doctors when I can focus on those symptoms, especially in the Emergency Room. When dealing with a new primary care physician, it is not so easy to gloss over the non-POTS symptoms.

    I suspect that patients with a lot of pain get the worst treatment. Where I live I don't dare mention pain, because I will automatically be labeled a drug seeker and treated badly. In fact, most doctors here will not accept chronic pain patients or if they have a prescription for opiates - it's the first thing the receptionists asked when I was looking for a new primary care physician a few years ago. This is a blatant violation of the ADA, but nobody worries overmuch about that.
     
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  6. Patrick*

    Patrick* Formerly PWCalvin

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    I've never gotten anywhere mentioning ME/CFS or any of the so-called alternative medicine treatments we deal with here in PR. That will almost always work against you. But it's funny because if I merely mention various components of ME/CFS, they take me very seriously.

    For instance, when I mention that I'm "immune comprimised" and I refer to the blood tests that prove it, I get taken seriously. When I mention chronic low blood pressure and autonomic nervous dysfunction, I get taken seriously. All these things that make up ME/CFS get taken seriously when they're mentioned as isolated conditions, but so help you God if you attempt to tie them all together under the ME/CFS umbrella, suddenly you're a nuisance and a joke.
     
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  7. Jennifer J

    Jennifer J Senior Member

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    Thank you everyone for what you wrote. I feel so much clearer in understanding, and that a foggy veil has been lifted in regards to many aspects of this and how I need to proceed. Thank you! Thank you!:hug:

    (I wrote this after a visit with my PCP, so I'm struggling with words and a little discouraged by how the appointment went. More situations to figure out.)

    Thank you, @Sushi!:) This is very helpful. I need to do a better job at describing my symptoms. I've been so hesitant, after going through a 7 year fight for SSDI and dealing doctors who would prescribe antidepressants or a gym membership. I'm always concerned they are going to prescribe something that is contraindicated and I'll be considered non-compliant or write something in my chart out of context that I don't have the energy to correct. Both cause more problems. I feel like a tight rope walker during my few doctor visits. Then there's the times I foggily say too much. I'll get better at this, hopefully past this, and find a doctor I can build a trusting relationship with.

    @Kati, thank you, too!:) I'm learning, better late than never. Thank you for helping me understand this better. I need to work on developing a better/good relationship with a local doctor and being able to see a ME expert. Probably like many of us, I'm having a hard time with being able to trust and feel comfortable in a medical setting with all that I've been through these last 15 years and how much of this seems to be. Also, there's so much at stake.

    @taniaaust1, thank you!:) I wish doctors recognized MCS and the extent that it is health and life limiting (for me it may cause any of these: angioedema, swelling, pain and coughing). I had to bring it up today with a doctor because I may have to have an endoscopy. So I need to check out the facilities and make sure the facility and the staff who will be with me during the procedure isn't scented in anyway.

    My experience with having to bring it up in these situations, if they even seem fine with it, their treatment of me, words, or the chart seems that they have me suspect something being up psychologically with me. It causes me more distress and complicates me getting treatment.

    After seeing my doctor today, I'm wondering how she understood what I said about my scent sensitivities and how she perceives me.

    Thank you @jimells. All these years, I kept thinking that doctors would know or understand this illness. So each doctor I would tell them mainly cause I thought I needed to because of all the complications involved in my health and ability, and I was hoping they could help me.

    I'm sorry for your personal experience of doctors psychologicalising CFS. It seems to be the case for me and most of us. Thank you CDC (and other that went into and goes into this kind of thinking)! If I had the energy to pursue things, I need to have other things going on with me diagnosed. Then I can have the diagnoses charted so I can bring them up, and leave out CFS and MCS.

    I know, I feel bad for you and people I know that are in pain, and needing prescriptions for it. That's awful, that the receptionist asked that and that doctors won't accept chronic pain patients. It seems to be the struggle of what are you to do, you need help but many of the people you need to help you won't because they won't see you or help you - they look at you with suspect.

    Thank you for writing what you did.:) It helps.

    @Patrick*, thank you!:) Well, said and so true what you wrote. I feel so much clearer as I read what you wrote, and everyone else shared. You think I would have understood this before now. It's so interesting or frightening that they aren't putting it all together. I think I've been hitting my head against a wall thinking the doctors I've seen would, I had thought at least one of them would know some of the ins and out of our illness. I guess a lot of that has to do with how it has been presented by the CDC and other and the news. I long for the day, as we all do, that this will not be the case. In the mean time, from reading what you wrote and others, it's best to share my symptoms, the diagnosis I have that they know and will take seriously, and hopefully can treat, and try to see an ME specialist.

    Thank you everyone for sharing with me, it helps a lot.:heart:
     
    Last edited: Feb 19, 2016
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  8. Jennifer J

    Jennifer J Senior Member

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    Hi, Everyone. Gearing up to try to see another new doctor to hopefully see if she can be my primary care doctor and help me. This doctor does phone visits once established (hopefully covered by Medi/Medi), is comfortable with complex illnesses and loves a good diagnostic challenge. Sounds promising, huh? Oh, and I forgot to say she believes in mutual respect and working together. :thumbsup:

    Curious, the last one I saw didn't know about testing anything to see if I was reacting to upping my dose of Vitamin D (I was urinating like crazy and felt like hell - fatigued beyond my normal bad and extreme fog, may have had other symptoms can't remember without finding my notes).. My doctor I saw last year, before that one, did some blood test, can't remember what it was to see if I was having a problem from taking Vitamin D. I want to say the test had to do with calcium but I'm not sure.

    I would have thought this is common knowledge what is written here about Vitamin D supplementation, other vitamins/supplements to help it if feeling bad with it, and chances of ?depletion of (can't remember the name) that a blood test would show.

    Would this be medical doctor common knowledge especially what to test for after taking Vitamin D and feeling so bad?

    Thank you for any knowledge you can share of this. :)
     
    Last edited: May 1, 2017
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  9. Crux

    Crux Senior Member

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    The doctor may test your blood calcium with a Comprehensive Metabolic Panel. Vitamin D can increase it. High blood calcium, or hypercalcemia, can be dangerous.

    The symptoms can include excessive urination and more :
    http://www.mayoclinic.org/diseases-conditions/hypercalcemia/basics/symptoms/con-20031513

    This happened to me, even with lower doses of vitamin D. I wasn't very much over the limit, but I felt awful too.

    Also, the Doc may want to check PTH, or parathyroid hormone levels, if the calcium is high.
    http://www.mayoclinic.org/diseases-conditions/hyperparathyroidism/basics/causes/con-20022086
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There are a couple of tests for vit D and who knows what your new doctor will know. The most common is 25-hydroxy-vitamin D, but the one sometimes associated with a rise in calcium is 1,25 dihydroxy-vitamin D. Insurance usually pays for the former, but not the latter.
     
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  11. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Does your angioedema respond to antihistamines? I only recently learned that some types don't.

    Hope your appointment goes well.:)
     
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  12. Jennifer J

    Jennifer J Senior Member

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    Thank you. @Crux. :thumbsup: Yes, that's what it is (hypercalcemia) I couldn't think of or could I remember which way it went (rise or fall).

    Sorry you felt awful too and you weren't very much over the limit. That's interesting. I slowly went from 2,000 iu to 3,100 iu and felt horrible. I dropped it back down for now and feel better.

    Thank you for letting me know the doctor can order a Comprehensive Metabolic Panel. I'll ask him the next time if I go see him again for it (or I'll ask the new doctor if she is unaware). That is if I try increasing my Vitamin D again and feel horrible.

    I hope you've worked out how to get more Vitamin D if you need it.

    Thank you, @Sushi! :tulip::tulip: I guess it isn't something that is taught to every doctor in medical school. :( Good to know that the 1,25 dihydroxy-vitamin D test is sometimes associated with a rise in calcium, and about the insurance.

    Thank you, @antherder.:) I had to cancel it this week so it'll be awhile until I can get in again. Hopefully, hopefully.

    My angioedema I've had constantly 24/7 for the last 16 years responds to H1 with H2 blockers. It doesn't respond to only H1 blockers.

    Here's where it become a little more involved. If it is made worst from smells, foods or medicines, I can add another H1 on top of what I'm taking to help. If it's from something I'm smelling, no amount of anything I take will stop it from happening and continuing, I need to get away from the source of the smell.

    I've had to be on hydrocortizone (Cortef) a higher dose for a long time (up to a month) in the past when additional antihistamines weren't helping after smelling or eating something that made my angioedema worst. I ended up being on Cortef for years:( because we could never wean me off of it due to frequently being exposed to something.
     
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