1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Significant Improvement Story -- Focus on Thiamine Deficiency

Discussion in 'General Treatment' started by Wayne, Jul 3, 2013.

  1. Tammy

    Tammy Senior Member

    Messages:
    369
    Likes:
    306
    New Mexico
    I too............tested low in B-1...........long time ago. I recently came across some old notes of mine when I was feeling better. At the time I was experimenting taking B-1 shots every other day....(gave them to myself.......don't even know where I got or ordered it from) NAC, ALA, glutamine....................In my notes I had noted that thiamine needed to be present for the branch chained amino acids to work efficiently.........which is big in my case because of my marked muscle weakness. Isn't it weird how we forget some of the things we've done in the past.............and how or why we stopped.
     
  2. Tammy

    Tammy Senior Member

    Messages:
    369
    Likes:
    306
    New Mexico
    @ Danny.........................Who do you get to interpret your organic acids test? In the past.......it's been awhile, but I sent my tests to Dr. David Gersten to interpret........however he's not cheap.
     
  3. taniaaust1

    taniaaust1

    Messages:
    8,253
    Likes:
    5,216
    Sth Australia
    What Ive found in the past is that things which make me feel an increase of energy dont prevent my PEM afterwards so one needs to consider that even when one has energy increase. I nowdays do feel energy most of the time but still cant do much at all due to the after effects I get if I act on the energy I feel. So i can be left with feeling a lot of energy I cant use due to the consequences if I do.
     
    charlie1 likes this.
  4. determined

    determined Senior Member

    Messages:
    295
    Likes:
    59
    USA: Deep South
    http://forums.phoenixrising.me/inde...-very-low-very-slow-results.9849/#post-179513

    The link is my first explanation of my experience with the methylation supplements. My belief is that CFS is autoimmune and that my "inoculations" of the vitamins set in motion some blocking antibodies that lessen my reactions to those molecules (just like allergy shots are thought to do....). Perhaps the gigantic doses of thiamine (or anything else) allow for a higher than usual amount available, at least for a short time. I think that strategies such as these only work until our immune systems figure out a way to restore the crazy, out of balance "balance."
     
    JAH and Wayne like this.
  5. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,128
    Likes:
    3,398
    N. California
    Being detached is the ideal, but not a realistic one. Most people I know have at least some emotional investment when they try out a new remedy, protocol or practitioner. That's just human nature.

    I actually kept track of most of the practitioners that I remembered consulting with, and most of the remedies I've tried in my 36 years with this disease, and I have given each of them a grade on their performance, based on effectiveness and helpfulness. As it turns out, these were my conclusions:

    50% (66)--worthless
    19.2% (26) detrimental
    15.7% (21)--minimally helpful
    14.3% (19) supportive
    .75% (1)--very helpful

    On my list is included practitioners of every ilk imaginable, from allopathic MDs to NDs, homeopaths, herbalists, nutritionists, acupuncturists, Reiki practitioners, hypnotists, chiropractors who do cranial work, psychotherapists, Bach Flower remedy experts, and assorted New Age wackadoodles. You name it, I have tried it. Most of it was a failure. I wish I had gone to the beach instead. It would have been a better use of my time and energy.

    In addition to the above, since joining PR in 2009, I've tried the following, all recommended by someone here:
    Fredddd's protocol (made me a lot worse),
    Rich's SMP (minimally helpful),
    Dog Person's B2 + manganese protocol (made me worse),
    the Wahl's diet (made me REALLY hungry),
    the GU syndrome protocol (no effect),
    Laminine (made me worse),
    the 23&Me-Yasko related protocol (still in progress)--some supps made me worse (molybdenum, TMG, zinc) and some have been okay in small doses (HB12 and MB12).

    Considering everything I've tried, and all the money, time and energy I have put into it, and all the adverse or worthless effects I've had, I think caution and healthy skepticism about B1 is a reasonable place to come from.
     
    Adlyfrost, NPDivi, Misfit Toy and 3 others like this.
  6. taniaaust1

    taniaaust1

    Messages:
    8,253
    Likes:
    5,216
    Sth Australia
    Ive had an interest in Thiamine for a while as I was given at least one injection of this when I was in hospital 2-3 years ago and I still dont know why (I wasnt in for surgery), so wonder if I'd come up deficient on some blood test done while there. (Im been planning to one day get a copy of my hospital records to find out why I was given Thiamine injection)

    At Naturopathy college we were always told that if one is deficient in one B vitamin, one is likely to have some issue with other Bs too. (MethylB12 and hydroxyl B12 help me a bit).

    "Diabetics are typically deficient in thiamine."

    Interesting, esp since Im starting to get diabetes.
    .....................

    For those who want to know a bit more about this vitamin.. here's some things out of my self written college notes from a lecture on it (so hence some of my spelling here may be wrong).

    - It's very poorly stored

    - Co-factor for a number of important enzymes involved in CHO metabolism including Transketolase which is needed for the pentose phosphate pathway. This pathway is important for the synthesis of all the ribonucleotids ie ATP, GTP, dATP, dGTP and the nuclearic acids ie RNA and DNA.

    - Essential for maintence of HCL acid.

    - Its unstable to light (so dont leave injections of it laying around!), oxidation and sulphur

    - Food sources are wholegrains (husks), sunflower seeds, legumes (have high amount), organic molasses (has high amount), pork, beef, yeast esp brewers *Note molasses if not organic contains concentrated chemicals. Non stone ground grains loose thiamine.

    Metabolism of Thiamine

    - Hydrolysed in small intestine to TPP and then converted back to thiamine, then transported to kidney, liver and heart tissues (straited muscles). Once there converted back to TPP by thiaminokinase (enzyme) (some of it circulates in a couple of other forms).

    - In order to stay active it needs manganase. Folic acid and Vitamin C are needed to stop breakdown occuring too quickly. The B vitamins particularly B2 and B6 are needed for activity.

    Deficiency Symptoms

    - fatigue
    - emotional instability/ irritability
    - heart problems (tachycardia, failure, enlarged)
    - neurological problems eg ataxia
    - anorexia
    - pain in calves with pitty odemea (leads to heart failure)
    - prickly sensations in the lower extemities
    - nystagmus (jerking eye movements- can be irreversable)
    - lowered sense of touch in feet an hands, numbness
    - weight loss/ muscle wasting (can be masked by fluid increase)
    - No short term memory (may not be able to see fact from fantasy, may be Beri Beri symptom)

    Thiamine deficiency symptoms are classic for MS. Severe Deficiency- Beri Beri

    Infantile Beri Beri (occurs in breast fed infants of deficinent mothers). Prevents very rapidly in convulsions and usually results in heart failure
    - Wet Beri Beri (usually older people). Breakdown in capillary lining. Digestive disorders eg wasting, weakness in legs and neurological issues (reduced sensory and motor functions, mental confusion
    - Dry Beri Beri (all people). Starts with abdomenal and digestive problems. Wasting and weakness in legs. May have breathing issues.

    Early warning signs - Wernickes disease, nystagmus, ataxia later Korsakoffs psychosis - amnesis and confusion.

    Needs A LOT of supplmentation.

    May need more thiamine

    - fevers use up high amounts
    - high consumption of seafood (eg Japanese diet) destroys
    - Digestive problems
    - excessive use of polished rice or excessive use of refined grains
    - increased consumption of high calorie foods (as its needed for energy conversion)
    - Increased age (start to get decreased thiamine from 35 years due to losing ability to absorb). Young children during growth spurts need more.
    - Stress (uses large amounts)
    - Surgery (uses large amounts)
    - Tea/Coffee destroy
    - The more B2 you have, the more thiamine you need.

    No known Thiamine toxicity... warning but damage done to other vitamins is considerable if too much is taken, so may result in other vitamin deficiencies.

    (vitamins tend to work together)

    I hope this info helps someone.
     
  7. Lou

    Lou Senior Member

    Messages:
    500
    Likes:
    316
    southeast US

    Hi Dreambirdie,

    Regarding tachycardia I'm pretty sure B1 interferes with B3 so you may wish to take extra B3 at a different time than high dose B1.
     
  8. A.B.

    A.B. Senior Member

    Messages:
    764
    Likes:
    2,254
    As promised, here are my observations after a week with high dose thiamine therapy.

    There are noticable improvements in several areas:

    - I don't need as much sleep. I cut my sleep times by one hour or so. I wake up on my own early in the morning and don't feel messed up. The morning fatigue has clearly improved. This problem has plagued me for years, so when it suddenly gets better it's most likely the therapy.

    - Fatigue during the day has only decreased slightly.

    - I am more able than before to have a fluid and spontaneous conversation, because previously I used to have problems finding the right words without stopping for a moment to think, and that's better. I did not expect this.

    - Thiamine also seems to have a relaxing and mood lifting effect.

    I'm not sure if it's related to the therapy, but I also seemed to have an unusual stability in blood sugar. I say 'seemed' because I went 8 hours eating very little the other day and did unusually well. It's only one occurrence so I cannot attribute it to the thiamine, but it should be mentioned I suppose.

    I think my initial goal of 1500 mg/day may be too high. There doesn't seem much of a difference to 500/1000 mg.

    I'm curious how other people taking high doses are doing, please share your experience.
     
    ukxmrv, Ritto, Hanna and 3 others like this.
  9. Sasha

    Sasha Fine, thank you

    Messages:
    8,773
    Likes:
    8,152
    UK
    Thanks for reporting back, A.B.!

    I'm only on my second day at 600mg so nothing to say yet. :)
     
    A.B. likes this.
  10. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,373
    Ashland, Oregon
    FIVE days since above report:

    I experienced much worse than normal cognitive function in the past five days, but don't know whether it's attributable to the thiamine I had taken. Not knowing, I was hesitant to take more. But I intuitively felt even the 100 mg. was too much for my system to handle, at least at this time.

    But I was intrigued by thiamine making me sleepy/groggy/drowsy. And wondered if a smaller dose might be helpful for me as a sleep aid. The night before last, I took 25 mg, and even though I couldn't sleep more than about five hours, I did wake up feeling much more relaxed (and better) than I usually do. I repeated this last night, and had the same benefit.

    So at this juncture, I'm suspecting high dose thiamine does not hold out a lot of promise for me, though I'm not ruling it out, and plan to experiment more with it. But I do think that smaller doses will likely continue to be helpful for me as a sleep aid, making me sleepy, but not nauseous and whacked out like the higher 300 mg and 100 mg does did.

    A.B. -- Thanks much for your positive report. And congratulations on your improvements! :thumbsup:
     
    Ritto, Hanna and Sasha like this.
  11. Lou

    Lou Senior Member

    Messages:
    500
    Likes:
    316
    southeast US
    I started out @600 mg with 300 mg increments daily reaching 1500 mg yesterday. The first high dose of 600 definitely had positive effects, more energy and just felt better. Went downhill from there, though; yesterday was a disaster. Feel rather stupid for pushing through to target dose as I was already much too drained and tired to have any reason to think this was good for me.

    I wonder if cofactors play a huge role in this therapy. Perhaps we initially have enough of one or more cofactors and thus a positive effect, but then high doses of b1 depletes these reserves and things backfire.
     
    Ritto, Wayne and Sasha like this.
  12. rebar

    rebar

    Messages:
    36
    Likes:
    40
    I am not a person who has noticed any improvement from treatments I've tried. Like many there is some hidden mechanism that runs a type of symptom cycling .

    I read the review of B1 the day Cort posted it. I googled it, felt it was safe and worth a try, so the same day I purchased 500mg tabs and took two, considering my body weight I felt a 1000mg dose daily would be a good place to start.

    within 2 days I noticed differences in my symptoms, reduced agitation upon waking, less pain and a more normal feeling energy "envelop", my whole system feels calmer.

    I'm now on my Fifth day of improved symptom experience. All this has been following an 2 to 3 months of decline.

    I am only stating my perceived experience with this, if I crash hard tomorrow I'll post that too.
     
    Ritto, Lou, Hanna and 2 others like this.
  13. Tammy

    Tammy Senior Member

    Messages:
    369
    Likes:
    306
    New Mexico
    I was wondering what might be some possible causes of b-1 deficiency for me and going over some of my notes from years ago along with what I posted in above thread.........I had written down that I had a sulfation impairment...........(my notes are terrible, very scribbly)........I wasn't converting sulfites to sulphates very well?...........and sulfites destroy thiamine. I wish I still had the test results explaining this sulfation impairment.
     
  14. Scaldy

    Scaldy

    Messages:
    3
    Likes:
    5
    Vancouver, BC
    I've tried the b1 protocol as posted by the OP for a week now. I raised my dosages over 4 days to reach the 1800 target found in the study. I've been at full dosage now for 3 days. My experience has been underwhelming so far. I have noticed a few nights of bad insomnia but my energy level has been good, but nothing that's "game changing" so far. I may go back and try at lower dosages to follow up.
     
    Ritto and Wayne like this.
  15. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,373
    Ashland, Oregon
    I'm continuing to find it beneficial to take 25 mg at night as a sleep aid, and also before my afternoon nap. Just yesterday, I decided to do an experiment and take 25 mg before going for my walk. It seemed to modestly improved my stamina, and so did it again today, and had the same results. --- Smaller doses spread out over time appears to be working well for me.
     
  16. Lynn

    Lynn Senior Member

    Messages:
    303
    Likes:
    54
    Update: I am now up to 1800 mg of B-1 after 10 days.

    I am also finding that it may be cutting down my need to sleep. Instead of getting up around 10:30 or 11:00 am I am waking up naturally around 9:00. I think I do have a boost in energy but I am in an overdo-it mode with six grand kids visiting. Things are more hectic than usual but I think I am handling it better than normal. I still am getting PEM so it is really hard to tell how much it is helping so far.

    I also have noticed that my sensitivity to smell, light and sound may have diminished a bit. Again only time will tell how much it is really helping because of the PEM.

    Lynn
     
    A.B., Wayne and Nielk like this.
  17. Nielk

    Nielk

    Messages:
    5,464
    Likes:
    6,015
    Queens, NY
    I am joining on the bandwagon here and started today at 250 mg. I will post on my progress...if any.
    We can have our own research study here.
     
    Wayne likes this.
  18. madietodd

    madietodd Senior Member

    Messages:
    2,483
    Likes:
    1,741
    East Coast, USA
    I just sent for 100mg tablets. Since I'm crazy reactive to random supplements/meds, I'm going to start at Wayne's level - a quarter tablet at a time. And since sleep is a primary issue for me, I'll start at bedtime.

    I read somewhere on Cort's blog that the effect was all or nothing...........they had to find the right dose. Not in the study........in a group of people who tried it themselves?
     
    Wayne likes this.
  19. Lynn

    Lynn Senior Member

    Messages:
    303
    Likes:
    54
    Does anyone know if any of the study participants went over 1800 mg/ day?
     
  20. rebar

    rebar

    Messages:
    36
    Likes:
    40
    This is significant, I continue to improve, if you do respond, PLEASE go slow. We do not, as of yet know
    what effect it has on PEM.
     
    Wayne likes this.

See more popular forum discussions.

Share This Page