Given up with doctors

Discussion in 'Fibromyalgia Main Forum' started by JoFMS, Mar 7, 2007.

  1. JoFMS

    JoFMS New Member

    Hi All,

    I've just about had it with doctors now so have decided not to pay anymore money on them after years but to find things out myself.

    Went to the homeopathic doc today as I keep getting new symptoms and am getting much worse in the last year. Exhausted, dizzy, feel like I'm going to collapse, numbness in my right side of body especially leg, neck, shoulder, back pain, nauseus, can't walk more than to the car and back, unable to drive or basically do anyhting!

    I'm also really thirsty all the time, have a dry mouth and can't seem to get enough water, I urinate more than 3 litres per day. So the doctor sent me in for tests for diabetes insipidus but they did a test for sugar diabetes which has nothing to do with water diabetes so surprisingly they came back normal, she got the wrong tests ordered, another waste of money, yet she still wont send me for the correct tests.

    Anyway she does a meridian stress test on me each month that costs R700 which is making me broke and now says she thinks it's because of electrostatc radiation, first it was emotions and now this. How can I feel like I'm dying from that? I get so cross when docs say its due to our emotions and things! I'm afraid I've lost all hope with homeopaths!

    Any responses welcome, just wish docs would take us seriously sometimes!

  2. 139864

    139864 New Member

    HI jofms

    ME ALSO!!!

    Now I am having ACUPUNCTURE ...because my daughter is expecting my first grandchild ...seems to be working ..but a bit expensive ..but if it helps ? :) :)

    Stay WELL
    Brenda UK
  3. Catseye

    Catseye Member

    The reason the doctor's aren't helping is because there are a bunch of chemical imbalances in the body that they can't address with drugs. When they take our blood, they are only looking for issues that can be treated with a drug. One thing you probably really need are plenty of free form amino acids.

    I'm using desmopressin, the diabetes insipidus hormone right now. I had to beg a doctor for it because they couldn't figure it out by themselves. I'm getting better, though, after using it about 6 months or so; I don't think I'll need it forever.

    You might want to check out my "what worked for me" post. It's very long, on page 3, and I address most of our problems. Almost all of the supplements I'm taking were recommended by Dr. Cheney and Dr. Teitelbaum, 2 cfs experts who realized the body's need for the chemicals it was no longer able to make by itself. Most of them are available in supplement form. We're all off chemically, and it's hard to figure out which ones you may need; I'm mainly referring to metabolites, a specific class of supplements that are alreay manufactured by and in use by a normal, healthy body. Obviously, that ain't us.

    A double blind trial is not used for chemicals the body already makes or uses because we know what they do already. So they aren't "drugs" and they won't be prescribed. If you are deficient in some of them, you will feel it. I don't feel like I'm dying anymore and I dealt with that for the better part of 4 years. Doctor's do not study metabolites or order any tests for them UNLESS they have a drug that can attempt to address the problem. And since a drug can't imitate a metabolite properly, it's not going to help that much.

    Also consider organic acid testing for the metabolic systems in your body. That's what I'm about to do now. They can address these issues properly and help us figure out what metabolites we really need rather than leave it to us to try a bunch and see what happens.

    Explain to your doctor that in cfs patients, there is often damage to the hpa (hypothalamus-pituitary-adrenal) axis and that hormone problems often present themselves with no obvious cause. Like diabetes insipidus. Your hypothalamus has stopped instructing your pituitary to product antidiuretic hormone. The main side effect of desmopressin, the synthetic version, is a rise in blood pressure. And since mine was already low, it has really helped me. That should explain to the doc why you may have diabetes insipidus and they can either consider prescribing it or ordering a test for it. If you don't address the problem, you can get dehydrated every night and that will stress the adrenal glands and cause further problems. That's what happened to me.

    good luck!


  4. NyroFan

    NyroFan New Member


    I am so sorry you feel that way. Stick to your guns and find someone who will work with you. Just my suggestion (of what I would do).

    Onward in the battle to help us all!!!

  5. JoFMS

    JoFMS New Member

    Thanks All for your replies.

    Barrow innovations - I am convinced I have diabetes insipidus but I can't get my doctor to give me the desmopressin, she is trying all her homeopathic meds instead for my pituitary but I really don't think they have helped at all in the last 8 months, in fact I'm worse.

    I think I must go and see my medical practitioner again but then he just sent me home with amitryptilline for life which I can't take due to too many side effects.

    I've read your what worked for me story and printed it out so I hope some of it will be useful for me, this DD is turning into a full time research job! I'm already trying the grapeseed extract for my daily headaches. I have strated taking one 160mg a day at lunch time but may try increasing it to 2 shortly as I have been on it for a week with no improvements yet.

    I already do many of the things you have suggested but will certainly be trying the others.

    Thanks again for all your help (if only I could just buy the desmopressin over the counter!)I also have low blood pressure so it may help me with that too!
  6. terrilynnb

    terrilynnb New Member

    I have beenon Desmopressin for about 3 years and while it hasn't helped a lot of the symptoms, it has really helped with the lightheadedness, dehydretion thing, although I did start taking another med, Proamatine, that raises my periferal blood pressure at the same time. Together they have definitely helped witht the dehydration-horrendous thirst thing. I was tested for DI by an endocrenologist=I had never heard of DI and actually had seem other endos over the years who never even mentioned it. I think an endocrinologist is your best bet for a diagnosis of DI and treatment. It is a very simple test-the hardest part was driving to there without water all night before or in the morning of test. Good luck to you!

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