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Have some good news from my Doctor :)

Discussion in 'ME/CFS Doctors' started by Lisa, Oct 11, 2009.

  1. MEG

    MEG Senior Member

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    B12

    Lisa,
    So happy to hear that you and Jeremy had such a positive reaction to the B12...Please keep us posted.

    I do worry about both of you as the weather get's colder. I wish I had the money to build you nice cabin...Oh, the financial problems we all face with this disease. Do cuddle and keep warm...

    Are you excited as I am about the XMRP? Oh, I hope we have some treatment soon...
    Marian
  2. Lisa

    Lisa Senior Member

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    Western Washington
    Hello Finch! :)

    It really was amazing to remember what being well could feel like. It immediately changed the way I was reacting to my environment, the way my thought patterns ran, everything.

    I've tried everything else I could think of, so I think I'll try clicking my heals together Finch. Thanks for reminding me that is the way to make the magic work. :D

    Hi Marian!

    We'll be alright. I'm not done fighting to get indoors yet. My goal is by first snow of this year, whenever that might be. So likely have 2.5 - 3 months left on that goal. :) It is indeed very crazy the financial toll all this can take. And so little of it covered by insurance. :rolleyes:

    XMRV - well, I am mostly trying to ignore it because of the stress it brings to my system. It is like I'm aware of it, said hello as it went whizzing by last Thursday, but otherwise we hang out with different friends. Not the same social groups at all. Its in the drama club, ready to be on stage and in the spotlight. While me, I'm off in the 4H club trying to raise a goat. :D

    When the options for testing or treating it become a reality for medicare - then I'll be bouncing off the walls with excitement. :D
  3. Finch

    Finch Down With the Sickness

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    ... and you might even have good, solid walls to bounce off by then! Here's hopig!
  4. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

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    That sounds great. I'm willing to bet you will get even more mileage from dealing with the hormonal issues. When I started to treat my thyroid, several nagging problems improved. It was a bit bumpy at first but well worth the ride.

    Guess I slept through the party 8( But I guess I would have passed on the grubs.

    Peace,
    Susan
  5. Lisa

    Lisa Senior Member

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    Western Washington
    I think we can scrounge up enough party favors and leftovers for another day worth of party. :) Round these forums, a party isn't a party if it lasts less than two days. :D

    Finch,
    Have you seen pictures of my house yet? :) Its a straw bale house, which means the walls are plastered in over an inch of a cement/plaster mix. Hard as rock. lol Might get hurt if I go bouncing off those walls too much! :D

    Susan,
    Hello! :)

    Stick around, enjoy the party I've reopened for you, Finch, and Marian. :D

    That's great you had some stuff improve when you started treating thyroid! :)

    After the way the medication for our thyroid made both of us feel, I think were going to wait to start it until after getting solidly on some of these other new things like the b12, vitamin D, etc. It was low normal on the tests, not a required thing to treat just yet, so have room to wait and see if any of this new stuff effects it in the next couple months.

    Enjoy the party everyone! :D

    Lisa :)
  6. Finch

    Finch Down With the Sickness

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    Lisa, I haven't seen the photos, but it certainly sounds like it could be hard. Maybe good, tight tent walls would be much more fun anyhow! Just hold on to the tent for the bouncing celebration. Of course, you could always get one of those puffed up Sumo wrestler outfits to bounce around the house in. Just be sure there's someone there to pick you up when you fall over!:D
  7. jenbooks

    jenbooks Guest

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    Lisa--great about the b12. I thought you already were taking b12--? You had advised me where to get it compounded...

    Strange you were sunbathing nude hours a day and your Vitamin D still low. What does your doc say about that? What's using up that dang Vitamin D you're making!?!?!
  8. Lisa

    Lisa Senior Member

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    Western Washington
    [​IMG]

    HAHAHA :D

    That would be a fun party! :D

    Whoever has a birthday here next should have some of these outfits at the party. :D
  9. Lisa

    Lisa Senior Member

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    Hi Jen! :)

    You know, I didn't ask him about what might be using it but that is a good question. We had a lot to cover in this appointment and after the long drive it can be hard to think of asking for this sort of information. I suspect our sun up here is just really lousy sun. Or maybe I'm not so good at making the Vitamin D myself anymore. :rolleyes:

    I had been on some sublingual hydroxob12, the Perque brand. It did a bit of something for me in general, helped a lot with reactions to chemicals, but never any where near as much as that shot. :)

    Lisa :)
  10. jenbooks

    jenbooks Guest

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    How interesting that Perque helped somewhat, the shot helped so much and you did so badly with the methylb12 sublingual etc-----
    I am still fence sitting on what form of hydroxy to take as Rich said its probably not stable in water for very long. What form is your injectible in--water? Saline? How is it stored?
  11. jenbooks

    jenbooks Guest

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    PS Lisa I looked at your blog yesterday and I very much enjoyed it. I wish you'd post more pics of you and Jeremy and the tent. The tent actually looked very nice with the windows and so on.
  12. Lisa

    Lisa Senior Member

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    Hey, I'm glad you enjoyed it! :D

    I have a second page on there of just pictures. Not very many extra ones of us but give me time, I'll fix that. :) I haven't had much reason to take pictures of things around here till this year.

    Lisa :)
  13. Jody

    Jody Senior Member

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    Canada
    Couldn't have said it better myself. :)
  14. Rainmom

    Rainmom Guest

    best place to get MB-12 or hydroxy B12 is Falls Pharmacy in Snoqualmie

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