thiamine deficiency.......

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by odsel, Jun 25, 2005.

  1. odsel

    odsel New Member

    Found this on another website and thought it might be of interest..........


    ME: Myalgic Encephalopathy
    or Metabolic Error?
    Bronwyn's story is remarkable. After being ill for nine years with diagnosed CFS, the cause of her ill-health turned out to be something quite different - thiamine (Vitamin B1) deficiency caused by some sort of metabolic dysfunction.

    I have started this story so many times. There are so many things I want to include but an in-depth version of an almost decade-long battle with debilitating exhaustion is boring. I want to tell people the good part of the story, not the many dark moments I had along the way.

    When I was ill I trawled the Internet and books looking for answers. I read of so many miraculous recoveries. I read stories of people who had tried everything and then finally they found the answer. Everything I had tried had led to someone's amazing recovery. So why couldn't I get well?

    I first got sick when I was fifteen years old. Onset was sudden in that I can remember the exact date and time but gradual in that it took about eighteen months to develop the whole range of what became a familiar set of symptoms. My illness made me give up soccer, tennis, and my part-time job. For years I struggled through high school and then university. Studying was important because I knew that I would need a way to pay my way through life. I couldn't be on a disability pension forever.

    During the nine years of being sick I visited several GPs, two specialist physicians, a neurologist, gastroenterologist, naturopath, dietician, and an immunologist. I have had countless blood tests, ECGs, EEGs, glucose-tolerance tests, CT-scans, MRIs, a gastroscopy, abdominal ultrasounds, and a chest x-ray. All of them came back normal. I also had the Bioscreen tests done. At least they showed up that I had severe metabolic disturbances. Unfortunately, eighteen months of their treatment protocol did nothing to help. Treatments I have tried include gamma globulin injections, vitamin, mineral and amino acid supplements, rest, massage, graded exercise, ungraded exercise, rest, anticonvulsants, beta blockers, antibiotics, meditation and more rest. Rest is the only thing that could be relied on to help. The more rest I got the better I felt but every time I tried to increase my activity levels I would fall in a heap.

    I had good periods when I could attend university part-time on campus and bad periods so bad that I couldn't take a shower. A wheelchair helped me get out and about when I couldn't walk far but I was still sick and no-one was able to help. I was supposed to be in the peak of my life but the most exciting part of my day was when I was able to go and collect the mail.

    In March 2001 I went to see a new GP. I had moved out of home and was heading downhill fast. I needed a support person who could write certificates to get me extensions for university assignments and special exam conditions. I never expected any more help than that. At my first appointment my new doctor said, "Bronwyn, no-one is tired for no reason, there is a reason you are tired and we are going to find out what it is." I sat there amazed at what I was hearing but was thinking to myself, "good luck." After all, I had tried everything to get better and had failed. Every doctor I had ever been to immediately put up a barrier when Chronic Fatigue Syndrome was mentioned. Why would this doctor be any different? The answer is simple: because she cares about her patients. She kept an open mind and kept asking questions. She trusted me when I told her how I was feeling and she was willing to work as a team.

    The first thing we concentrated on was helping me to gain weight. I was severely underweight at 41kg when upwards of 51kg was desirable but no test had identified the reason for my lack of weight. A visit to a dietician was unhelpful so I put myself on my own weight gain regime. I started to eat 85 grams of fat per day. I kept a diary to keep track of what I was eating and I slowly started to gain weight at the rate of about 500 grams per week. Unfortunately, the extra couple of kilograms played havoc with my existing blood pressure problems. My blood pressure would drop from 130/80 to 115/60 after standing for only two minutes. My pulse was erratic, and my lower legs would turn purple. My doctor was very worried about this and rang the registrar at the local hospital. He suggested checking my thiamine levels. Tests showed that my thiamine levels were about thirty percent below the low of the reference range. I had a severe deficiency which was very unexpected since I had been taking thiamine supplements (in a B-complex) for years. When someone is deficient in thiamine it is usual for other B-vitamins to also be low. All my other B-vitamins were in the upper section of the normal range, presumably because of the B-complex supplements I was taking. Lack of dietary intake was clearly not the problem.

    My doctor started me on thiamine injections. A couple of days after my first injection I was hospitalised for three days with a severe viral infection. After being discharged from hospital I started again on the thiamine injections. To my amazement I started to not feel too bad considering how sick I had been with the virus. After six injections (over three weeks) my thiamine levels were still low so my doctor increased the dosage to 100mg every second day. The effect was remarkable. I actually started to feel well for the first time in nine years. Everyone was astounded.

    After a month of treatment I went on a driving holiday by myself to Fraser Island. I still had to pace myself but I remember ringing my Mum to tell her that I had just hiked two kilometres across sand dunes. Considering twelve months earlier I was using a wheelchair to get around, my news was nothing short of extraordinary. As I increased my activity I had to increase my injections to daily. This was no problem for me. Everyone was extremely happy but we were also cautious. I had had good periods before and they had always ended badly. But this time was different. My other good times had appeared out of the blue with nothing really initiating them. This time there was a reason for my newfound health. Over a twelve-month period I slowly increased my activity levels until I was attending university full-time, playing soccer, and working a part-time job.

    In July 2002 I got engaged and at the end of 2002, after eight years of university I graduated. I now have a full-time job in my field and my life is normal. A work-up by Westmead metabolic clinic has failed to find a reason for my thiamine deficiency but it is suspected I have a thiamine transporter defect. There are no specialists in Australia in this field so nothing has been confirmed. Whatever the name, it is clear that I have a metabolic error of some sort.

    The interesting thing about thiamine deficiency is that it causes symptoms identical to those described by many people with CFS. According to the Merck Manual, early thiamine deficiency causes fatigue, irritation, poor memory, sleep disturbances, precordial pain (pain over the heart and lower part of the thorax), anorexia (uncontrolled loss of appetite for food), abdominal discomfort, and constipation. I have heard many people diagnosed with CFS complain of these symptoms.

    The severe form of thiamine deficiency is called Beri-beri which translates literally as "I can't, I can't". There are two forms of Beri-Beri, wet beri-beri and dry beri-beri. Wet beri-beri causes problems with the cardiovascular system such as tachycardia, vasodilation and eventually heart failure. Dry beri-beri causes peripheral neurological changes such as pins and needles in the lower extremities, muscle cramps in the calves and eventually footdrop and toedrop. I have heard of these problems occuring in people diagnosed with CFS and before we discovered my thiamine deficiency I had already started developing cardiovascular problems.

    I am not suggesting that everyone diagnosed with CFS actually has a thiamine deficiency and I'm certainly not suggesting that daily thiamine injections are a quick-fix for people with CFS. I am just suggesting that it might be worthwhile for people diagnosed with CFS to consider thiamine deficiency, whatever the cause, as a possible problem.

    When I first found out about my thiamine deficiency I looked on the Internet and in books for any reference linking CFS to thiamine deficiency. I was amazed that there were none. Has no doctor considered the possibility that some people diagnosed with CFS may have a metabolic disturbance resulting in a thiamine deficiency?

    Finding the reason for my illness has answered many question. It explains why graded exercise never helped (the more I did the more thiamine I used up) and rest did help (if I rested what little thiamine I had was preserved). It explains that my illness was not my fault or the fault of my parents. I simply had a vitamin deficiency caused by a metabolic error and it took nine years before a doctor was skilled enough to find it.

    I think the reason it took so long for any doctor to discover the cause of my illness was because doctors get caught up in the diagnosis. When I first got sick the doctors concentrated on giving me a diagnosis because usually after a diagnosis comes treatment. After I had been diagnosed, the doctors concentrated on the diagnosis and attributed all my symptoms to CFS. Every time I developed a new symptom or a symptom became worse I was told "that's what happens with CFS". I think more progress would be made with patients suffering from chronic exhaustion if doctors continued investigating until a cause is found. Of course this is seen as too expensive, but then so was having me on a disability pension for seven years.

    I know how improbable my story sounds. Even I cannot believe it sometimes. You may be cynical and think that maybe I was already recovering when I started on thiamine injections but you'd be wrong. I was not recovering and I have not been cured. I am completely dependent on thiamine injections to maintain my health. I know I am extremely lucky and every day I still feel thankful that I am able to live a completely normal life. I ask that you never give up hope. Live life the best you are able and keep asking questions. Eventually you may find the key to your health.


    Bronwyn
    March 2003

  2. Somewhere

    Somewhere New Member

    This is facinating. Hopefully soon I'll have the energy and time to really look into this.

    What a mess your life became before you found the solution. So glad you didn't give up!!

    Too tired to say much more tonight.

    I sure hope others find this post and get some benefit from it.

    Thanks for sharing your remarkable story.

    Sally
  3. fahan

    fahan New Member

    you have found a help or better a cure for your self.

    I know someday soon there will be a cure if really there isn't already one lurking!

    Am happy for you!! fahan
  4. moxiepup

    moxiepup New Member

  5. tansy

    tansy New Member

    for magnesium to be utilised by the body adequate levels of the B vits especially B1, B3 and B6 are needed. A significant number with these DDs report taking Mg and the B vits help.

    In the case of Bronwyn, in the article Odsel posted, her problems originate from a metabolic disorder. Bronwyn's case highlights the need to the investigate symptoms in patients with these DDs. In the UK where Odsel and I live, the official line is that medical investigations are unecessary. Even the two biggest national patient organisations' most influential medical advisers insist no investigations are required.

    This article, like so many other case histories we read, illustrates why the cause of our symptoms should be persued until the answers are found.

    I am wondering how my GP will react to the report on a recent MRI when I see her on Monday. My ME/lyme specialist won't be a bit surprised. I suspect my GP will intially come up with the same excuse Darude's doctors did, but it will be difficult to sustain since ramifications of what it showed have been on my medical records since the early 80s.

    All this just goes to show that MUS (medically unexplained symptoms) means they are dismissed as MU purely because no one has bothered to find what lies behind them.

    love, Tansy
    <br>[<i>This Message was Edited on 06/26/2005</i>]
  6. Mikie

    Mikie Moderator

    Are many people misdiagnosed with ME/CFIDS or are the terms simply an umbrella under which all kinds of illnesses are lumped?

    Since the recent study in which a number of genes in PWC were found to be upregulated, my guess is that ME/CFIDS may be different illnesses in many of us or one illness which manifests itself in varying degrees with bone-crushing fatigue as the prominent symptom.

    We know that the central nervous system and metabolic processes are involved. Chronic infections suggest that the immune system is also involved. Now, there is a lot of attention being paid to cardiomyopathy which may stem from viral infections. An abnormality in any one of these areas could conceiveably cause the symptoms of ME/CFIDS.

    Thanks for posting this.

    Love, Mikie
  7. Littlesprout

    Littlesprout New Member

    I had testing done through King James labs, it showed I needed the B1. I have been doing the injections, 200mg every day, kinda of painful but makes a big difference
    I get them from a compounding pharm. I have the mito disorder, I have FM, Lyme, CFS, etc. It helps but still have alot of FM pain, really helps with energy, mood. On no depression drugs, this works well. I also take Natural Calm, the best Mag supplement
  8. Dee50

    Dee50 New Member

    Thank you so much for taking the time to post this story. Dee50
    <br>[<i>This Message was Edited on 02/18/2006</i>]
  9. tlmelton

    tlmelton New Member

    I have had sever CFS since age 23 I am now 48 and have been bed ridden 90% of the last 25 years.&lt;BR&gt;
    One of the first and most unusual symptoms I got with CFS was that my feet burn every night; so much so that I put blue ice containers in my socks at night just so I can fall asleep. I took my second injection today, last night I did not need Ice in my socks.&lt;BR&gt;
    I will post more when I know more.&lt;BR&gt;
    Pinky
  10. mbofov

    mbofov Member

    Thanks so much for posting - that is fascinating - one more avenue to explore ...&lt;BR&gt;
    &lt;BR&gt;
    Mary
  11. Picklington

    Picklington New Member

    Thanks for posting!
  12. Rrrr

    Rrrr Member

  13. Rrrr

    Rrrr Member

    anyone else trying this?
  14. tooks

    tooks Member


    Heart palps can we a side effect. I am watching till others report!
  15. Forebearance

    Forebearance Member

    Yes! I'm going to try B1 orally. But being me, I'm going to increase gradually, by 100 mg at a time.
    Are you going to try it, Rivka?
  16. Waynesrhythm

    Waynesrhythm Member

  17. tooks

    tooks Member

    Hi Wayne, Hi Rrrr--

    I've been taking benfotiamine--wonder how the dosing compares?
  18. TigerLilea

    TigerLilea Member

    I'm trying to find 500 mg tablets of B1 here in Canada but so far haven't been able to find any.