New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Partial remission for a day

Discussion in 'General ME/CFS Discussion' started by AdamS, Jul 14, 2017.

  1. AdamS

    AdamS Senior Member

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    Yesterday I had an amazing partial remission. The first thing I noticed was that my drive/motivation came back, I began thinking of business ideas, researching and planning actively with ease, there was no fatigue really, just clarity. My brain was actually working and it was an incredible feeling.

    Additionally I managed a 2 mile walk and also went to the gym. For once I could do really light repetitions of squats or the bench press without getting out of breath, I felt normal when I stood up too...I thought I'd flipped the switch!

    The variables that changed that day/week are as follows:

    • 2 days ago Doc started me on 30mg lansoprazole for suspected gastritis caused by excessive drinking at the weekend.
    • I was having burning pain in my upper abdomen/chest for the past two days.
    • Took 2x paracetamol for toothache before bed a few nights ago.
    • I had some dental work done yesterday, 2 fillings replaced, anaesthetic with no adrenaline was used.
    • I'd just been resting/pacing as usual, nothing else of note had changed.
    Anyway, the partial remission didn't last long, at around 4pm yesterday I felt my stomach rumble indicating that I needed the toilet...almost immediately my brain fog came back and I felt super lethargic and out of it.

    I wanted to post this because I find it fascinating that I could go from feeling almost normal, to feeling horrendous again in the space of about 10 seconds. It seems to be related to the gut for me but i'm not sure...any ideas are welcome!
     
    Last edited: Jul 14, 2017
    Little Bluestem, merylg, erin and 8 others like this.
  2. Manganus

    Manganus Senior Member

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    Canary islands
    ideas?

    o_O

    Well, I leave that to others. Interesting, anyway!
     
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  3. Skippa

    Skippa Anti-BS

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    My symtpoms have always seemed to be related to the gut somehow... intestinal discomfort and chest pains can often accompany crashes, and sometimes developing "other" gut problems can make ME worse... plus IBS has been present ever since I got ill too.
     
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Many years ago I had a remission that lasted about two days. It's just like you said - as if someone had flipped a switch and this disease never happened. And also like you, I wanted to be physically active, so I swam a mile, which was twice the distance I could normally swim.

    This came about right after an acupuncture treatment from someone who was filling in for my regular acupuncturist. I had one more treatment from her but it didn't have the same effect as the first one.

    There are other people here who have had brief remissions for unknown reasons.
     
    AdamS likes this.
  5. pcmenten

    pcmenten

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    Candida. Try taking a Candida remedy on an empty stomach, alternating with Saccharomyces boulardii when you eat.
     
    Cyndia likes this.
  6. Alexandra90

    Alexandra90

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    I often (well not too often unfortunately) have days like that. Thought that was just normal with ME? :woot:
     
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  7. BFitz89

    BFitz89

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    I've had decent days, very bad days and somewhere in-between lately. Never a full blown partial remission where I'd feel comfortable exercising though. Tonight is pick-up hockey night and something I'd be at nearly every Friday night in the past... I'd love to give it a go, but I'm almost positive I'd be unable to.

    I also feel my gut is very much responsible for this... And also have experienced an increase in unwell feeling and heavy brain fog after a bowel movement. It's strange. I could be having a rather low brain fog day and then go to the loo and wala I'm back in intense fog. Makes no damn sense!
     
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  8. BFitz89

    BFitz89

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    What makes you think that if you don't mind me asking?
     
    AdamS likes this.
  9. Sandman00747

    Sandman00747 Senior Member

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    About a year and a half ago I was sitting at my computer and all of a sudden it was like a switch was flipped in my body and I experienced a 100% total remission! It was my old self and it felt so wonderful after so many

    years of misery. But, alas, after 3 1/2 days while going to bed one night I felt a touch of that dreadful funk coming back over me and woke up the next morning with the full blown illness back as severe as it ever was.

    I still have great faith that Dr. Davis' research is truly onto something, as he talks about finding a substance that will flip a switch in our broken bodies and return us to relatively normal functioning. Something flipped that switch in my

    body and for 3 1/2 days it was 100% the old me. I cannot describe how wonderful it was. And it restored my long lost faith that there is only minimal if any permanent damage and that there is a way out of this hell for all of us!

    Every spare dollar I have now goes to Dr. Davis' research as I feel he has at least found a path in this dark forest that may well lead us all out of this misery and get us all back on the road to wellness.
     
  10. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I have good days and bad days. My gut symptoms are definitely secondary ones though. they come following a bad day rather than heralding the start. My bad days always start with a worsening of cognitive symptoms (memory, confusion) nausea and joint muscle pain and obviously the drop in stamina. Gut comes afterwards. I've put this down to histamine overload but thats just my pet theory at the moment.
     
  11. Hip

    Hip Senior Member

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    I have also had the same experience on the few occasions that I have had short remissions: the first thing that I notice is that drive and motivation come back in a strong way, and I find I can plan and organize with sharp clarity. It is a lovely feeling when this happens.

    This makes me wonder whether it is just the brain fog that is the main hampering factor in ME/CFS, and this brain fog then causes a motivational fog as well; or whether the actual motivational circuitry of the brain is dysfunctional as well in ME/CFS.

    The striatum, which is located in the basal ganglia, is a center of motivational and decision-making in the brain, and according to Cort's article, the striatum appears to be strongly associated with the fatigue in ME/CFS. So possibly some dysfunction of the striatum could be hampering the motivational and decision-making processes in ME/CFS.
     
  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I apologize for quoting myself, but I need to clarify that this was NOT just a "good day" or two. This was like I I had NEVER been sick and could have returned to a 40-hour week job, gone to the gym 3 times a week, done all my housework plus dated! I had absolutely no pain, no brain fog or fatigue.

    Sadly, all my prior symptoms returned.
     
  13. gregh286

    gregh286 Senior Member

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    I used to get them also when I was much worse. Could never find triggers one way or other.
    It is heartlifting to know that we can switch on and off like a light. Means whatever we have is not permanently broken.
    Still backing adrenal receptor antibodies that shutdown metabolic energy cycle.
     
    Last edited: Jul 16, 2017
    AdamS likes this.
  14. tudiemoore

    tudiemoore Senior Member

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    About a year and a half after I was diagnosed and treated for Lyme/CFS/fibromyalgia I began to gradually "recover"..
    At that time, I expected to recover! I had no idea that this was a lifetime trip I was on...

    After all, hadn't I done all, (everyone!) , all the healing things my doctor had advised, all that I read about, all the things I read about in the brochures from the health food store, and learned at the yoga retreats. My list went on
    and on, two columns on a yellow legal pad---

    At the time I had never been introduced to the delights of brain fog but energy level, planning and carrying through
    with projects, socializing, working (a flexible job I loved) were there.

    While I wasn't looking it all sneaked into my life again. I experienced every one of the symptoms, plus now the brain fog. This time I was housebound, fogged, and with a large degree of malize. I was just barely able to plan and get food into the house, survived on cold cereal and peanut butter and jelly (actually, marmelade :nerd:),sandwiches.

    This was the period when more and more of my friends fell away and my family, a thousand miles away, just responded with an "oh, yes, yes. I get tired too!". I felt uncomfortable taking the well-meant offers of help from my fellow church members, most neighbors,

    I thought then, "It's not just today I need help, I am in a bad way. I am practically an invalid. It's an ongoing project."
    You have a real life. I won't put you into that."

    As gradually as it sneaked back in it crept away. Today I operate at a 50-60% pace. Am I really "better" or have I adjusted to less?
    I have just completed an intensive series of antibiotics and I do feel better. I can plan and complete things, usually little stuff like cleaning the refrigerator, clearer thinking, considering socializing.

    But I'll take these little things, enjoy them, be thankful, and live in daily fear of " Watch out. Is that pem? Can I rest and actually feel better? Am I getting brain fogged or did I forget math was never a good thing,"?

    And I am thankful every time I sit at the computer and know you are here.
     
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  15. pcmenten

    pcmenten

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    (The above quote was in reply to my suggestion that he might have an issue with Candida albicans.) I had long-running issues with my gut. I got some improvement with use of Saccharomyces boulardii. Then I tried using remedies such as Candex and Candibactrin and got more improvement. I have more stable GI function, more level energy levels, and improvements in cognitive symptoms.

    This isn't going to be a cure, but it will relieve symptoms while you research what the underlying problem is with your system. In my case, I'm sure that improving GI function will also hasten whatever cures my other problems.

    I'm taking Doxycycline (100mg BID) for Lyme disease. I know that antibiotics disrupt the gut environment, so I am careful to also take the S. boulardii yeast and biotics such as Lactobacillus Rhamnosis and other strains to maintain a degree of gut normalcy. It's a low-risk remedy that works for me.
     
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  16. pcmenten

    pcmenten

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    It is so interesting to hear of the sudden remission of symptoms. I didn't quite have a 'light switch' experience, but I did have a dramatic improvement in cognitive symptoms over a course of three days when I first experimented with Doxycycline. This happened early this year. By the third day, the 'fog' had lifted so completely that I rediscovered the joy of being able to write programming; it was fun!

    That experience has given me hope, but I haven't experienced quite the same relief of symptoms since that day. It's strange that others are having similar dramatic relief, and then relapsing. That seems like a very strong 'signal' about some underlying systemic mechanism and its functioning. It sounds like it is immune-related.

    - Paul
     
  17. BFitz89

    BFitz89

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    So you believe it's an autoimmune response? Do you think we'll find an outright cure or some type of medicine we'll have to take indefinitely to get a relief in symptoms?
     
  18. pcmenten

    pcmenten

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    The binary nature of remission that some are seeing implies that there is a malfunction in the endocrine system. Some research is showing an involvement in the mitochondria. Short answer to your question; yes, we will find a 'cure', and it will likely involve mitochondrial function.

    But I also suspect that this might turn out to be similar to diabetes where diet, exercise and improved gut health can help those on the margin, but others require medication.
     
  19. pcmenten

    pcmenten

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    lansoprazole is a proton pump inhibitor

    The anesthetic was likely lidocaine. Question for Adam; were the fillings in your upper jaw?

    - Paul
     
  20. Wishful

    Wishful Senior Member

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    I had several transient remission episodes in the first few years of my disorder. Yes, the 'flip of a switch to full remission, then switch back'. Those first years it seemed to be a standard type IV food sensitivity, but the symptoms were the same I now have with CFS, so at least part of the mechanism was the same. After the t-cell problem was cured (apparently by food poisoning), prednisone and then cumin seed (cumin aldehyde) triggered similar transient remissions the first few times, then stopped working.

    The transient remissions certainly did give me hope. It showed that this was a reversible disorder rather than a degenerative one. All we need to do is find out how to flip that switch reliably. My feeling is that there's a molecule that we aren't producing the correct amount of.
     
    CFS_for_19_years likes this.

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