1. Patients launch a $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!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

On path to recovery.. Finally

Discussion in 'General ME/CFS Discussion' started by commonsense, Nov 28, 2013.

  1. commonsense

    commonsense

    Messages:
    12
    Likes:
    29
    Hi Guys and Gals,

    I am writing this message in good faith and with a sincere hope of helping as many people as I can. For almost 4-5 years I have been a regular spectator on this forum, but never had an account nor did I actively participate. This was mainly because I didn't have enough mental energy to do so (I am sure all of you understand what I mean). I had almost given up on my Master's degree in Engineering and had almost quit my life. But somewhere inside me I knew one day I would recover. No matter what and that kept me going.

    First of I want to sincerely thank Rich, Freddd and all their disciples. Their knowledge has really helped me in my quest with CFS (a broad umbrella term). Though I have to admit I never exactly followed Rich's and Freddd's protocols. This was in part due to my fear of making my body a guinea pig, yes I am weak hearted. Like everybody else here I did my own research for years and years. But I also made sure that I thought at least a 100 times before popping any pill in to my body. Since I don't want to make this post too long, let me start with the supplements that really helped me (in chronological order).

    Supplements:
    - Methyl B12
    - Potassium (from packaged and fresh coconut water)
    - Vitamin C (forgot to mention when I first posted this thread)
    - Magnesium Citramate
    - DAO supplements -> A big discovery for me

    Lifestyle:
    - An indomitable spirit
    - Support from family and friends
    - Regular exercise, in spite of being on the verge of fainting within minutes on many many occasions
    - Low sugar, low carb diet
    - Apples
    - Bananas (in moderation)
    - Potatoes (in moderation)
    - Coconuts
    - Home made food - from scratch

    Symptoms:
    - Vertigo attacks (lasting first few months)
    - Severe severe brain fog
    - 24x7 dizziness
    - Anxiety
    - Tinnitus
    - Extreeeeeme fatigue
    - Breathlessness
    - Sleeplessness
    - Thoughts of.. (you get it)
    - Terrible itching at night (with and without hives)
    - Food sensitivities (to Caffeine, chocolate, MSG, tomatoes, all fermented foods, all food additives)
    - Bedridden for several weeks
    - Loss of hearing
    - Sudden weight loss (lasted a few months)
    - Sensitivity to sound and light

    Clinical diagnosis:
    - Meniere's disease (not true)
    - Low B12 - 190 pg/ml

    Self diagnosis:
    - Histamine Intolerance (yet to be a 100% sure)

    After more than 4 years of debilitating, life-crippling symptoms I finally decided to pop in a Methyl B12 pill and within minutes it gave me so much energy that I started jumping with joy. But the very next day a biiiig crash. Like all of you here must be aware, potassium or its lack there of was the real culprit here. After months of supplementing with B12, I decided to supplement with potassium in its most natural form - Coconut water. This was the next step in my recovery, but still I was only at 50% as long as I stayed away from sugar and all other food culprits mentioned above.

    In this period of extreme suffering, my parents encouraged me to go through all sorts of holistic, ayurvedic, yogic and what not treatments. Out of these only mild yoga and the herb ashwagandha seemed to help me. But I promptly discontinued all herbs just because I didn't want anything inside my body that I wasn't sure of.

    Fast forward to the 6th year, I developed a chronic hay fever and decided to pop in some antihistamines. And to my surprise it was like a light bulb glowing in my head! Antihistamines promptly took away all of my symptoms (including hay fever) for a couple of hours, and then back to square one. But this gave me a strong hint that it could be in fact histamine intolerance!! Fast forward several months, I decided to pop in a DAO supplement before mealtime and within days I felt 80% recovered. I couldn't believe myself, and I am still in disbelief. As if this can't be real after so many years..
    Last edited: Nov 28, 2013
  2. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,860
    Scotland
    :balloons::angel::balloons:
    Wonderful news!
    Thanks so much for taking the time and effort to post it.:thumbsup:

    Can I ask, did you get PEM? It's not something you've listed, although it sounds as if you've described at least one big crash.
    golden and Valentijn like this.
  3. commonsense

    commonsense

    Messages:
    12
    Likes:
    29
    Hi Sue. Yes I decided to post this because I know exactly what all of us are going through.

    Could you please elaborate what's PEM? I had many crashes with B12, small and big. So I decided to supplement with B12 only twice a week, giving my body enough time to recover.
    Last edited: Nov 28, 2013
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,755
    Likes:
    3,012
    Cornwall, UK
    I hope that this is a lasting recovery/improvement. For how long have you been well now?

    What is DAO?
  5. maryb

    maryb iherb code TAK122

    Messages:
    2,704
    Likes:
    1,680
    UK
    @MeSci
    diamine oxidase = DAO
    MeSci likes this.
  6. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    506
    Murcia, Spain
    Those are the most important things for recovery. Congratulations and is always interesting to read about how someone healed...

    [​IMG]
    merylg, maryb, Wayne and 1 other person like this.
  7. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,860
    Scotland
    PEM = post exertional maliase, Commonsense.
    or PENE, Post exertional neuroimmune exhaustion, that's another name for it.

    It's the bit where you get really ill much later after overdoing things. At the start, it's only a day or so, but as the years go by the length of time increases - until it doesn't appear until a week or so later.

    I had a bit of a "eureka" moment, about 30 minutes after taking my first sublingual Vitamin B12 tablet.:thumbsup:

    Not energy, but the "pain in my brain" stopped.
    The feeling that my brain was vacuum sealed inside a pressure cooker, and it refused to co-operate. When I looked at 2+2, it made a pretty pattern on the paper, not even 5!
    It was a sort of permanent feeling I'd had for 3 years.
    It felt like that feeling you get when somebody scrapes a fork across the bottom of an aluminium pot, or the blackboard squeaks, or a small child does that bloodcurdling shriek they seem to enjoy.
    maryb likes this.
  8. commonsense

    commonsense

    Messages:
    12
    Likes:
    29
    Sue, my response to Post-exertional malaise is a resounding YES. Sorry I had so many symptoms all at once, I forgot to list this one. Through all these years I always had it even after mild forms of exercise.

    About a year ago I decided to go all out and prepare for a marathon (sounds crazy, but not to my indomitable spirit). On day 1 I tried to run 3 miles, but day 3, 4, 5, 6 never came. However I felt very good on day #2. This was always the pattern where I felt OK on day #2. But I can assure you the exertion was over-the-top-debilitating. The only solution I had for this was to take more B12, drink lots of coconut water and sleep during day time. I still get PEM but its very mild, lasting a day and it doesn't bother me. I clock in an average of 5 km of running + walking everyday.

    Regarding the symptoms you listed, I had very similar symptoms where I too felt like my brain was vacuum sealed. Severe brain fog.
    Last edited: Nov 28, 2013
    merylg, WoolPippi, peggy-sue and 4 others like this.
  9. Wayne

    Wayne Senior Member

    Messages:
    2,176
    Likes:
    1,240
    Ashland, Oregon
    Hey Commonsense, congratulations and a BIG :thumbsup: on your dramatic improvement (that doesn't seem like too strong of a description to me). Thanks much for sharing; I'll be watching and reviewing this thread very closely. Thanks for the details; for me, the more the better. I'm particularly interested in your histamine experience, and what prompted you to think this was a major factor for you. Thanks for whatever information you can provide.

    Wayne
    peggy-sue and golden like this.
  10. commonsense

    commonsense

    Messages:
    12
    Likes:
    29
    Hi Wayne, thank you :)

    Since the very beginning of my condition, I reacted very strongly to Caffeine (and Tyramine) and MSG (or free Glutamate in any form). It gave me severe dizziness, nausea, brain-fog, extreme fatigue and so on. But it took me almost 3-4 years to realise this, because the brain fog was so severe it had clouded my thinking. And all this while I was drinking Tea in the hope it would make me feel better and was eating food at fast food restaurants (which is invariably high in free glutamate).

    When I eventually tried to go on an elimination diet, I realised that Caffeine (and Tyramine), MSG (or free Glutamate in any form), histamine and food additives were really the culprits. Fast forward a few months of trying to find the connection between Caffeine, MSG and histamine, I found it -> Amines. After this I stumbled upon websites talking about Histamine in food and I was literally aghast at how many of those foods I was eating on a regular basis. And like I mentioned in my original post, every now and then I would have episodes of severe itching at night lasting about 90 minutes. My dermatologist couldn't find anything wrong with my skin, and prescribed some antihistamines.

    This is how I figured it could indeed be Histamine Intolerance, since many of its symptoms matched mine.

    I hope this helps. (Hint: Home cooked food. From scratch :))
    Last edited: Nov 28, 2013
    WoolPippi, merylg, peggy-sue and 3 others like this.
  11. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,494
    Likes:
    1,105
    Florida
    Congratulations. I hope you continue to see progress.

    From what I've seen your progress could be just from eliminating food intolerances.
    I'm no longer surprised when I see someone responding to a whole foods type diet.

    What caught my attention is that you can run. My body / brain won't allow me to run. All my muscles turn to jello after about 20 feet. I'm not sure why but I had ataxia and assume that it's residual brain damage. My ataxia vanished 1 year post gf diet.

    Thanks for the dao tip. When I first started taking Zyrtec about 2 years ago, I felt great. That didn't last but at least I learned the importance of avoiding allergens.

    tc ... x
    merylg and peggy-sue like this.
  12. maryb

    maryb iherb code TAK122

    Messages:
    2,704
    Likes:
    1,680
    UK
    @xchocoholic
    me too - I used to love running short distances albeit, but like you my body goes all funny even after a few strides, I can't co-ordinate, and do a sort of lurch motion.
  13. Carolyn

    Carolyn

    Messages:
    2
    Likes:
    0
    France
    Congratulations for getting to the cause, commonsense , sounds logical given all you have told us.
    Have you had any histamine/dao testing and may I ask which dao supplement you are taking ?
    Thanks in advance....
  14. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,494
    Likes:
    1,105
    Florida
    hi @maryb,

    sorry to hear you can't either. I started a thread called "Can you run ? Move quickly ?" that you might want to check out. I'm hoping someone will know why or what to do. tx. x
    peggy-sue likes this.
  15. commonsense

    commonsense

    Messages:
    12
    Likes:
    29
    Hi Carolyn,

    My doc plain told me to not go down that route, since it's just going to be a wild goose chase. He was of the opinion there is no point pursuing my condition and it was a lost cause.

    Short answer: No never had any histamine or dao tests.

    I have tried DAOSin so far.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,755
    Likes:
    3,012
    Cornwall, UK
    Sorry to ask again but maybe you missed my question or I have missed the pertinent info, but I think it's an important point - how long have you been well now?
  17. commonsense

    commonsense

    Messages:
    12
    Likes:
    29
    I am sorry MeSci. I have been feeling well for about 4-5 weeks at 80% with the offending food items.

    And about 9 months at 60% without any offending food items. By 60% I mean I could do all my daily activities, drive, run about 3 miles once a week, as long as I kept away from the offending foods. The moment I introduced the offending foods even for a day, I was back to the super dizzy, brain fogged, itchy and fatigued state of affairs. Where I could no longer focus on my daily chores or any activity requiring mental acuity. It would take me almost a week to get back to normalcy (60%) and that too only by strictly avoiding any offending food items.

    But do bear in mind that even in those 60% days I would have PEM, lasting from 2-3 days. I would still feel dizzy, fatigued but only at a lesser severity than before.

    By "on path to recovery" I meant to say I consistently crossed the 80% threshold for several weeks for the very first time. And I am confident I will continue to do so for the better part of my life. I wish all of you good luck and god bless. I am praying for all of you.

    I hope I answered your question now.
    Last edited: Nov 29, 2013
    merylg, maryb and peggy-sue like this.
  18. beaker

    beaker CFS/ME 1986

    Messages:
    387
    Likes:
    567
    USA
    commonsense wrote :
    {emphasis mine}
    I think it's important for us all to keep our spirits up. But I do think it can be a bit of a slap in the face to say "it's the most important thing for recovery" Huh? That's straight out of the Wessley School, or at least it comes off as it.
    I know many wonderful positive attitude folk who have been sick for decades, or sadly have died from this illness.
    I also know some real crabby unkind folks who have improved. Sadly attitude is NOT the most important thing for recovery. Most of us wouldn't be here if it were.

    @commonsense : glad to hear you are doing better. The first few years are the ones you have the best chance at recovery. I hope you continue to improve. It is good to share those stories to offer hope to others. Thank you.
    Iquitos, merylg, Snowdrop and 2 others like this.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    2,755
    Likes:
    3,012
    Cornwall, UK
    Run 3 miles?! I don't think even the average non-disabled person can do that! How many miles can you run now?

    I classify my activity level at 60% but I'm not sure whether I could even walk 3 miles!
    merylg, beaker and peggy-sue like this.
  20. commonsense

    commonsense

    Messages:
    12
    Likes:
    29
    In the summer of 2011, when my parents visited me I couldn't even walk a quarter of a mile (0.25 miles). I would be breathless and suffer from PEM for several days after that.

    Today on an average I can walk 2-3 miles a day.
    Last edited: Nov 29, 2013
    merylg likes this.

See more popular forum discussions.

Share This Page