The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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A1 agonists to treat CFS/ME + OI? (A1 adrenergic autoantibodies / CellTrend)

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Jesse2233, Aug 10, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    @pibee what are your symptoms like?
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    @pibee I got your messages and apologize that I might not be able to reply until tomorrow (but I definitely will)!
     
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  3. pibee

    pibee

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    actually i made a mistake, 4) Anti B-2 adrenergic: 18.3 (top of range 14.0)

    it's 37.3 , not 18.3


    Hm.. long list. Now that I'm destroyed after many abx, it has changed, but since I'm sick for very long, 12 years of considerable CFS (since i was 18) and before that since puberty, maybe more objective to describe how I am last 10 years, so: (currently i'm worse)


    onset - gradual (but there was one 'breaking point' when i was 18, i had "nervous" (who would have thought this is literal !) breakdown, after death of father + vaccine while having a flu . then my face got numb, i got big psychiatric symptoms. I didnt notice big change in fatigue because i was always pacing and spending much time sitting, but i noticed shift from high school to university where i couldnt anymore go each day, i'd always try to skip at least 1 or 2 days a week. But in high school i did this too, was never good energy. It also overlaps with Hashimoto i had, that was untreated, but seems to me based on current symptoms it was CFS from 12 yrs old.

    I'd say i'm at about 50% for CFS, I studied full time, worked (next to study, only from home), had social life, but ALL time at home I spend half laying (maybe not fatigue but OI ?). So it takes 90% of my energy to get up and go, once I'm out, I dont feel so much fatigue. But honestly for 10 years I pace with only half day out of house so.. its my limit. and usually 1-2 days I dont go anywhere except to nearby store, 500 meters.

    walking tires me the most, dancing not at all. it is all very weird, i never understood it, but walking is my worst nightmare since i was 12 or so, my worst part of day was when i had to walk to the tram station 800 meters

    My brain fog is big. But i'm pretty much nonstop on computer, reading or chatting. i'm just not much productive because executive functions problems.

    It is a mix of symptoms of CFS, and 'PANS' or neuropsychiatric Lyme. I had apraxia (psychomotor problem), non-24 sleep disorder...
    but seems CFS is still dominant in my disability because laying a lot , brain fog, and unable to work full time.

    It is weird that i'm either bed bound (home) but still leave house each day and can go to concerts, parties without any fatigue (tomorrow i feel a bit better) but again spend at least 5 hours in bed... so might be more linked to ANS activation, i didnt do any studies ot check at which pulse I feel the best.

    I cant do any house chores, minimal, very minimal, again this is probably because OI, at lowere pulse than I have when i go out (?), and because of psychomotor problems - apraxia...

    I probably didnt help much with answer.
     
    Last edited: Oct 12, 2017
  4. Jesse2233

    Jesse2233 Senior Member

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    @pibee very interesting clinical picture

    Have you lived in the same place for a while? Given your improvement outside the house, is there a chance your symptoms are impacted by something environmental?
     
  5. pibee

    pibee

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    I live here for long time, yes. My apartment has visible leak and mold. Well that is one option, but i didnt notice i felt better this summer in another house for a month - so i dont think so
    I just got my MSH level today (screaming high!) , VIP is low, I was always convinced it's biotoxin illness, I was told by lab owner MSH could be high from other things and still be CIRS. - will have to explore this.


    after so much analysis and this difference :
    tiring ------------lllllllll---------------- not tiring
    walking, light house chores ----------- dancing
    also the fact that it feels like 90% energy is spent to get up from couch

    = I'd say best chance is it is linked to pulse, and in general OI. Maybe I feel better when a bit higher pulse than in aerobic activities?
    But I know almost nothing about it because I never FELT pulse problems to explore them. Until recently.
     
    Last edited: Oct 12, 2017
  6. Jesse2233

    Jesse2233 Senior Member

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    @pibee hmm have you seen any benefit from POTS drugs or IV fluids? and have you had a tilt table test?
     
  7. pibee

    pibee

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    I think it might be significant in my case that my face was botoxed. I'm not exaggerating I looked like Kim Kardashian, and moved only mouth, it was very painful too. It was completely gone after 1-2 years of antibiotics. Botox blocks acetylcholine receptors. There is some theory borrelia has bbtox1, similar to botox, which of course is not proven, but in my case i def had some botox-like toxin.
    so I dont know if immunity is prone to attack toxins, with antibodies, but this could explain so high levels of antibodies to acetylcholine receptors.

    Wish someone who knows more about this say if this makes any sense.


    https://wyss.harvard.edu/team/advanced-technology-team/mark-cartwright/

    http://www.personalconsult.com/articles/morelymebiotoxinevidence.html
     
    Last edited: Oct 12, 2017
  8. dreampop

    dreampop Senior Member

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    Midodrine is basically my life blood. I had me/cfs for 8 years before I took it and I actually don't understand how I was able to get a undergraduate degree and live life that fucked up. It was crazy. I take it, and it reduces fatigue by a small amount, brain fog noticeably and allows me to go shopping, exercise for 15 minutes etc. It's by no means a cure for me/cfs since I'm still housebound (Well, more like house-tethered since I can do stuff for a night or a few hours once in a while). I haven't got the antibody testing yet, but I plan too. I also didn't have orthostatic hypo tension, only borderline POTS.

    Funnily enough I took 3 beta blockers, salt loading pills + liquid loading, florinef, mestinon, clonidine at night, desmopressin, saline infusions, daily exercise and midodrine is the only thing that improved any of my amorphous symptoms like fatigue or brain fog, and only at the highest dose.
     
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  9. drob31

    drob31 Senior Member

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    Anymore news with a1 agonists?

    I originally crashed myself with caffeine and ephedrine (a1 agonist?).
     
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