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DId your ME/EDS symptoms first appear after AIRPLANE travel?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, May 5, 2013.

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DId your ME/EDS symptoms first appear after AIRPLANE travel?

  1. yes

    28.6%
  2. no

    53.6%
  3. not sure/did not notice

    7.1%
  4. after several air flights

    7.1%
  5. I suffer bad jetlag

    17.9%
Multiple votes are allowed.
  1. PNR2008

    PNR2008 Senior Member

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    OH USA
    I worked for AA in my 20's. I didn't get ME/CFS until 38 after a harrowing back surgery. I can tell you this I never felt well flying, it was a means to an end, I loved seeing new places but the airports and airplane fuel made me nauseous. Luckily I worked in a large office miles away from the airport. I'm grateful for the experiences I had traveling but my body would not have tolerated the stresses of flying or being in that environment.
     
    Allyson likes this.
  2. Marlène

    Marlène Senior Member

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    Edegem, Belgium
    I once read the airconditioning pipelines in airplanes are full of fungus.
     
    Allyson likes this.
  3. taniaaust1

    taniaaust1

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    My uncle who has systemic mastocytosis (can present very much like ME in many ways), he had his first severe attack of this triggered by flying.
     
    Allyson likes this.
  4. taniaaust1

    taniaaust1

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    Ally.. any specialist who is up with the MTHFR info will tell u that this disorder can cause quite a lot of issues in people esp if they have double copies of it. It doesnt just cause thrombosis but there is many research studies out there showing it also causes or increases likihood of other issues too eg its a well known cause for miscarriage (i think most gynos are aware of the MTHFR and that connection nowdays) , ive read the most common cause of a healthy baby miscarriaging, it can cause spina bifida (as it affects absorption of a mothers folate), it increases risk of schizophrenia (those schizophrenias can be treated with active folate etc) etc etc.
     
    Allyson likes this.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    PennyIA, I am just getting caught up here. Please keep us updated on your progress with methylation treatment. There are so few doctors who know anything about it here in the Midwest.
     
  6. Allyson

    Allyson *****

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    Australia, Melbourne
    Hi Tania - got my Mthfkr results today and they are negative - one thing off the list thanks
     
  7. PennyIA

    PennyIA Senior Member

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    Iowa
    I am now about four weeks since starting the methylation treatment. At this point, I already feel about 90% of 100% of what I used to be like (and this is eight years older). I still am getting occasional pain flares in two spots (down from five) and the worst - has been a level 2 (which is NOTHING). My energy level seems like it's completely restored - though to be honest, I haven't been pushing myself very hard. But, instead of spending 16 out of every 24 hours in bed (when I wasn't at work). I'm now only spending 8 hours in bed - and only to sleep. It is AMAZING. I'm just making sure that my after work hours and weekend hours aren't constant labor so that I don't overdo things while I'm still in recovery mode. Having diahrrea 9 days out of 10 to NO DAYS - huge plus. And my numbness & tingling on my right side - gone. Balance issues - gone. My only true complaint these days has to do with recoverying from oral surgery. I am absolutely flambasted by the benefits so soon. And I haven't even fully implemented the protocols. With time and exercise I'm hoping to build my muscles back to full strength and catch up on all the housework that didn't get done for years.

    The guy I'm seeing does skype appointments (since he doesn't take insurance - he doesn't HAVE to see you in-office). And I couldn't be more thrilled. Next steps while I continue to improve will be to get both my son's tested... maybe we can help them with some of their issues that could potentially be MTHFR-related and maybe prevent them from ever getting as ill as I was.

    Of course, all of this could just be 'remission' - but it doesn't feel like it.
     
    taniaaust1 and Little Bluestem like this.
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    Thank-you so much, PennyIA. Can you say who and where your doctor is? I think methylation treatment needs to be my next step, but I don't have any good options for doing so.
     
  9. PennyIA

    PennyIA Senior Member

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    Iowa
    Dr Fred Grover - http://www.revolutionarymd.com/

    He is in Colorado - but my first appointment with him was via Skype. My initial worry was that he was going to let me down like so many others had. Then it was like - I don't want to share him because he's obviously good and I want to be able to see him when I need him, so I don't want to recommend him to hundreds of people. But now, eh, so what if he's busy... I'm feeling so much better already that I can wait for my appointments.

    He doesn't seem to be following Yasko nor Fredd nor anyone else's recommendations that I've seen. He's more here - lets start with 'x' and then we adjust as needed. I was worried, because with my genes there's some suggestions that I need adenyl or hydroxy B12 and he was fine with me taking a oral supplement that contains methylB12 with the L5Methylfolate and not suggesting I start any sublinguals (well, he hasn't yet). But it's working - so I'm done worrying about it.
     
    Little Bluestem likes this.
  10. taniaaust1

    taniaaust1

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    Sth Australia
    Yeah its always good to get things like this off ones list of possible methylation problems.
     
    Allyson likes this.
  11. taniaaust1

    taniaaust1

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    I see you have two copies of the MTHFR.. Im the same and found that treating this was very helpful and had me heading in the right direction, towards improving, my stamina was even increasing (that is until I did a house move and further crashed loosing then all the benefits of what I'd been doing with the MTHFR treatment).

    Take care, its all too easy to go and loose the gains we get from treating something from overdoing things.

    Similar with my MTHFR specialist.. he's getting me to have methyl12 (but sublingually) and told me to stop hydroxy B12 which another specialist had me on (the hydroxy B12 had only helped my brain some but did nothing else).. with active folate (previous specialist had me on normal folate which did nothing) and methylB12 thou. We are still currently working towards getting the protocol Im on for this more right (he's going by changes he is looking for in my blood test results).

    Its kind of sad that more then 16% of our ME/CFS community would have a double gene of this problem gene and doctors dont routinely test us for it. (the rate for double MTHFR copy varies from 9-16% depending on what country you are in but would be far higher amoung us). We really need to have a study done on MTHFR and ME/CFS rates done.

    sorry to take this thread off topic.
     
    PennyIA likes this.

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