Thiamine As A Potential Treatment?

[gofl1]

Hey everyone, I have not been feeling great recently which has led me to once again start researching heavily. I stumbled upon a couple of interesting discussions regarding thiamine (vitamin b1). I am reposting one story I found on a CFS board below. I know there are a few old threads regarding thiamine on this forum but not a lot of discussion about it. It seems that thiamine deficiency can cause all sorts of symptoms in line with dysautonomia, including blood pooling in the legs. I even found a reference stating that thiamine deficiency has been implicated in erythromelalgia (burning feet syndrome) something that I have recently started dealing with. There are a few different forms of thiamine including benfotiamine and allithiamine. I am going to order an allithiamine cream I found because allithiamine has been found to penetrate the cns better than any other form. Has anyone here tried high dose thiamine (300mg per day+) or had thiamine injections? I am excited to at least give it a try.

Here is the story I found, note the part about blood pressure and legs turning purple:

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.

[xRobin]

It sounds like it doesn't hurt to get it checked out with a simple blood test. I'm wondering what would cause it, though? She says her cause is "metabolic error". I wonder if it could be caused by celiac disease?

I just saw this article about a women whose fatigue and orthostatic intolerance symptoms improved dramatically when she was treated for intestinal overgrowth.

[gofl1]

That is a great article. Apparently for an unknown reason some people just don't absorb thiamine properly. Could be gut bacteria or a metabolic process within the body.

[lewis]

I took benfothiamine for a bit until I realized it was making my symptoms worse. In fact any B vitamins made me worse. Took me awhile but B vitamins are vasodilators which is probably why they made things feel worse.

[targs66]

Thanks for posting this - food for thought!

[looneymom]

Really good find. It's very important that you figure out what form of B-vitamins that your body needs. This is one of many reasons why I did the 23 and Me testing with Tyler. I found out what types of B vitamins will absorb into his body. Not all be vitamins B vitamins are equal. Tyler's body will only use Methyl B-12 and he needs the correct form of other B vitamins that will work with Methyl B-12.

[DeGenesis]

Has Tyler tried dibencozide (adenosyl B12)? Fredd of methylation fame thinks that both methyl and adenosyl B12 are needed for complete recovery. Try a search for the so-called "Dead-lock Quartet". You already have 3 out of 4 bases covered.

[DeGenesis]

Sulbutiamine, a form of B1 that passes the BBB, makes me feel wired and gives me insomnia. I have yet to try benfotiamine on its own. There was a lot of discussion about thiamine on Imminst back in the day.