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Keep Dr. Chia appointment or cancel??

Discussion in 'ME/CFS Doctors' started by EMilo, Jun 30, 2014.

  1. Kati

    Kati Patient in training

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    All airlines (at least in the US and Canada) are obligated by law to provide services for disabled.

    As a passenger, you need to let them know ahead of time (book a wheelchair, oxygen and special requests like meals). Some airports will try to cheap out and leave you at customs (if international) and sometimes you need to request to be dropped off at the door and they will do it (I always have some tip for them). The service needs to be provided to and from the airport gate as required. For me the most difficult part is up the ramp off the plane, as the incline can be quite steep and flights are hard on my cardio-vascular system (I travel with portable concentrator) Interestingly, wheelchair attendants can be fairly mismatched and a tiny elderly woman is not the right match to push a wheelchair and carry on that is twice her size. Do not help them if you can't do it, (tell them to get help) these services are supposed to be provided to you and they are supposed to be adequate. (i was once asked to walk halfway up the ramp, that's a no-no)

    If you are lucky they will even stop so you can purchase a meal to go, fill out your water bottle or go to washroom. Just ask kindly.

    A few airports have for policy to not cross streets to take you to a shuttle stop at the curb side. However usually it's just a short distance. My last flight, the wheelchair attendant took me straight to my car and refused any tip!

    The usual problems I get while traveling alone is the period of time from arriving to the airport to getting wheelchair service, because usually airline will provide service from their counter, and sometimes you have to stand in line waiting to be served, and this can be curbed with careful planning and giving yourself plenty of time before your flight, so you can afford to sit and rest until there is a way to reach the counter.

    Lastly, do not hesitate to complaint to the airline in written if services were less than acceptable. Not only you could get compensated for the hardship, you also help the next disabled passengers in getting good service.
     
    Last edited: Jul 13, 2014
    EMilo, Valentijn, SOC and 1 other person like this.
  2. SOC

    SOC Senior Member

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    For what it's worth, I stopped going downhill and started improving in spurts once I started seeing ME/CFS specialists. At worst I was bedbound. Now I work half time tutoring, and do light housework. My daughter was nearly housebound and then went into remission with the help of specialists. Neither of us is cured, and both of us are always working at maintaining and making incremental improvements. We've both had setbacks, but neither of us has been back to where we were before we started seeing ME/CFS specialists.

    I suggest you anticipate improvement, while not expecting immediate improvement or a cure. ;)
     
  3. EMilo

    EMilo Elizabethmilo.com

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    Well, I did it and I've written a few brief blog posts on my journey. I still plan to write more on "Traveling with ME" and "Traveling while eating AIP + low-histamine", but haven't gotten there yet.

    Going to California in Pictures:
    http://elizabethmilo.com/2014/08/05/going-to-california-in-pictures/

    And then the other shoe dropped:
    http://elizabethmilo.com/2014/08/09/the-other-shoe/

    My letter to Dr. Chia:
    http://elizabethmilo.com/2014/08/17/dr-chia-appointment-preamble/

    My appointment with Dr. Chia:
    http://elizabethmilo.com/2014/09/01/my-visit-to-dr-chia/

    Once again, thank you SO VERY MUCH for all your help and guidance. This forum has been such an incredible source of information and support. I am very grateful.
     
    Gingergrrl, AndyPandy, NK17 and 5 others like this.
  4. justy

    justy Senior Member

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    so so great to read all your blog posts - too tired from reading now to comment, but I will try and remember to come back to this... your story was so similar to mine in so many ways. I AM STARTING ivig SOON...
     
    EMilo, Gingergrrl and NK17 like this.
  5. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @EMilo I wanted to tell you, and this is the God's honest truth, that your blog is the only blog that I have read in it's entirety in my life. When you first posted this thread on PR (re: whether to see Dr. Chia) I started to read your blog but started with the end and then read a few posts in random order.

    Your story was so compelling to me, that I went back to your first entry and read the entire thing (which took me a few weeks!) but I actually finished it today, the same day that you posted here on PR! It was a very strange coincidence!

    I hope you will keep writing the blog as your spirit and never-give-up attitude has helped to keep me going. Although the way we each became sick and the paths we took have a lot of differences, there are so many things in your blog that I deeply relate to.

    One is the fact that I also have to take tiny, micro doses of meds and cannot tolerate the big doses of things that most normal adults take! The other thing I deeply related to is the guilt I feel in my soul when my husband helps me with things that I can no longer do for myself and the sense of accomplishment that I feel when I am able to drive myself to an appt so he does not have to.

    I wanted to ask you a few questions, and please take your time in responding-

    1) Will you have a phone call or follow-up with Dr. Chia re: any of his suggestions (Equilibriant, IVIG, etc) or are you feeling that these are not right for you? You said you forgot to ask Dr. Chia re: anti-virals and I was wondering if you will still have an opportunity to inquire about them?

    2) Do you consider seeing any other ME/CFS specialists? You had mentioned in your blog being torn between Dr. Chia & Kogelnick so I was wondering if you are still considering OMI or other specialists?

    3) You wrote a lot in your blog about initially testing positive for malaria but then follow-up tests being negative. Do you feel that this was adequately ruled out? I don't mean to beat a dead horse, but that scared me when I read it and wasn't sure if your doctors really adequately ruled it out.

    4) Last question, are you pursuing the mold/mycotoxin angle or has that been ruled out?

    Thank you again for being so open in sharing your experiences in your blog. I hope and pray that you will find the right treatment angle and get some relief soon.
     
    justy likes this.
  6. EMilo

    EMilo Elizabethmilo.com

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    @justy you are starting IVIG soon?! Wow, I would love to hear how you managed to get it covered by insurance and what your experiences are. Please share with us/me how you do.... So far, I can't get a doctor to help me with it here in Seattle.
     
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  7. EMilo

    EMilo Elizabethmilo.com

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    @Gingergrrl another thing you might be able to relate to: how deeply touched, moved, excited, bashful and grateful I am that somebody read my (WHOLE?!) blog and wrote me to tell me they liked it. I know some people never feel less worthy after being felled by a chronic illness, but I'm not one of them. I have felt useless and guilty, unaccomplished and unworthy since my productivity at work started to go down hill in the wake of ME. Becoming housebound and unemployed, unable to cook, clean, interact with people... It is a wonder I have any self-esteem left at all because I really judged myself on how much I could accomplish and my activities and likeableness.

    Of course, none of that is important anymore and I am learning to be ok with this me and this life.... But, goddamn, does it feel good when someone writes something like what you just did. And it made tears course down my cheeks. Thank you, thank you.

    I'll answer your questions soon.
     
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  8. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @EMilo

    I'm glad and as I kept reading your blog, I had planned to tell you one day how much I enjoyed it and then you posted here on the same day I finished it, so it was perfect timing!

    I totally relate to this and often feel useless, guilty, and judge myself by my lack of productivity and inability to work after having a very successful career for 16 yrs. Even though my loved ones tell me that illness is not my "true self" and that I am still the same person and that my "job" now is to rest and follow my treatment plan, there are days that it is so hard to accept that this is really my fate.

    The other part of your blog that I really related to is that we both feel compelled to do endless research in the hope of finding the right med or supplement that will bring about a cure. And I feel compelled not just for myself but b/c I want to find a cure for everyone on here.

    That comment brought tears to my eyes, too, (in a good way!)

    No rush, take your time and I know I ask a lot of questions!!!
     
  9. justy

    justy Senior Member

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    Hi - I also love your blog and your writing style!

    I also had to travel a long way to see an M.E doctor. I live in the UK and IVIG is not available to me on the NHS and is too expensive privately so I am going to another country, where my M.E doctor is for the IVIG,

    I will need to travel there once a month for three months, for the IVIG. I will go with my husband by car and then train and then we will stay two nights and come home. It is the first time we have done this without our own car - I usually feel safer travelling by car as I have everything I need in there and can lay down if anything goes wrong or I am ill. But going the last leg by train makes the journey three hours shorter, which is better for both of us. I haven't been on public transport for 6 years, so fingers crossed.

    The IVIG will only cost me 480 euros a go, which is less than half the price in the UK - it's about 600 dollars a go, plus travel and we will pay for this ourselves. Then after three months I will go for 12 weeks antibiotics by IV as I have three intracellular infections.

    I am surprised if your IGG's etc are low that you cannot get it covered for you. Keep trying! it took me a few months to get to the point where I had decided where to go for treatment and got it booked in. We don't have much money so are going to fundraise online, sell a lot of stuff on ebay - hope that family helps out and then get a loan for the rest.

    It really sounds like the IVIG could help you - we sound much alike in terms of the infections and illnesses throughout our lives - it was very much like reading my own life. As was your description of the journey to Torrence CA - reminded me of my trip to Belgium to see My DR. I was trashed by the time I arrived and it took me a long time to recover when I got back - so im not sure how doing that once a month is going to be!!

    It sounds like you did amazingly well to cope the way you did - and it is great to be somewhere else isn't it? Your description of the accommodation reminded me of a trip we did last winter. We decided to go to Southern Spain for a month to see if the fine weather and sea air would help me (I have a lot of lung issues as well). We drove all the way there from Britian and when we got there the house was really moldy. I couldn't use the cupboards in our room - couldn't even open them and had to put all my clothes in a different part of the house. I had a dehumidifier on in there all day every day and through out gallons of water all the time.

    It was also freezing cold - despite being hot outside a lot. The heating didn't work adequately (reverse air con) and the one in my room blew stinking air in anyway! The TV didn't work, the internet didn't work and on Christmas day the oven broke! Anyway it was an experience that we all shared and as you say, layed down new memories.

    I hope you get some help with the IVIG soon. Will you be following up with Dr Chia? I cant remember now what else he put you on- equilibriant? how is that going. Did he test for any pathogens of any sort?

    The thing with the IVIG is that it can be very helpful for some, but it is only temporary. it doesn't boost your own immune system, just lets you borrow others peoples for a short time. For me that would be great as I have these chronic infections and keep catching other things on top - so the idea is that it would give my body a break from the constant infections and perhaps let it start to mount a defence against the ones I do have? But of course once you stop you could be back at square one.

    How I think it helps with PWME is that it gives a chance for your body to start to fight back, but then as my Dr has suggested you need to also go after any infections/viruses that are lingering and then support the immune system to sort of reset itself. Mine has never been that great though, so we will see. I couldn't afford to keep having it, or tolerate he toing and froing to the clinic for long.

    Good luck with it all and keep us posted !

    Justy x
     
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  10. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @justy I wanted to wish you the best with your upcoming IVIG and travel to Belgium. I hope you will post a thread to let everyone know how you are doing with it. I don't know if PR allows this, but if so, you should post a link to your fundraising website.
     
    vli and justy like this.

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