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Worth possible crash to travel for specialists?

Discussion in 'ME/CFS Doctors' started by Ocean, Feb 10, 2012.

  1. Ocean

    Ocean Senior Member

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    I am pondering trying at some point in the future to see a specialist. This will almost definitely require travel and much more exertion than I normally do. How do people weigh the need to avoid a crash and not overexert with the desire to see a specialist, especially an out of town one, when it seems so much exertion is involved in both getting to the visits and back and then being at the visits?

    I'm not looking for tips like pacing during the visit and trip or whatever, but more on how people make the decision about this. Would the exertion required and subsequent crash make whatever help a specialist could give not worth it? I'm particularly interested in how those who are housebound and low functioning manage this decision.

    When I've crashed in the past it's been very bad each time and lasted and for many, many months at a time and I've never recovered to my previous level after the crash. So I am very careful with my exertion and pacing now and overdoing it seems like a very dangerous risk because of how long my crashes are and how much worse I end up even after I come out of them. What it would require for me to see a specialist is many, many times more exertion than anything I currently do.

    I'd like to see or at least consider seeing a specialist if possible but I wonder if it would actually make me worse and not be worth the specialized care if it means a severe crash with long-lasting or permanent repercussions. Do people who are low functioning/housebound wait and hope they improve first before seeing a specialist, especially out of town? Or take the risk of getting much worse from the exertion and just go?

    Is there any way to get info on what the specialists do and try to have a local doctor do those things? I have a cooperative, caring doctor but just have no idea what to really have him test and ask him about. I'm not able to gather all the info from this site as I can't understand much of the medical stuff being said here and there are so many approaches that it just hasn't been possible for me to really be able to organize and apply the information, despite my efforts.

    Your input and personal experiences are very much appreciated.
  2. Sasha

    Sasha Fine, thank you

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    Hi Ocean - have you thought about asking whether the specialist could, via an initial phone consult, recommend some non-prescription stuff for you so that you can try to improve enough for a visit without crashing? Not sure if that's possible but might be worth a try. I'd stress that you have a cooperative local doctor who would work with the specialist.

    I really sympathise with your problem!
    ggingues likes this.
  3. Sparrow

    Sparrow Senior Member

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    For me personally, early on I was so bad that I didn't think I could handle it. I made the decision not to, just because the trip would have been SO far beyond my current level of functioning, and because I was already so bad that I wasn't sure I could cope with getting any worse.

    I did a lot of research instead - much of it through this forum, some from books, and some through the websites of various ME/CFS specialists. I also enlisted the help of a naturopath and got some limited help from my family doctor (though neither turned out to be very useful).

    I'm continuing to work on my own now. I'm a little better, and feel much better than I did, but I think the trip would still be rough. And while I would love to have a doctor's supervision with things, I am willing to take the risk of some of the less hardcore treatment options on my own. So there are still things I can try. I figure I will likely continue to try what I can myself until I run out of options or get well enough that travel isn't so bad, and then I can look into doctor's assistance from there. If your doctor is truly willing to help, that's a huge advantage. There's a lot of information out there if you've got a medical professional who is willing to listen.
  4. Ocean

    Ocean Senior Member

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    Thanks Sparrow. I prefer this option too since I am pretty low functioning right now and don't want to risk the little improvements I've made since my last bad crash. The trouble is I just have not been successful navigating the info in order to do things on my own or approach my doctor with it. I have tried many times to figure out the info on this site and I just fail. I don't know if it's brain fog, ADHD cognitive issues, lack of proclivity for science oriented information or what but I just can't make heads or tails of any of it. And I actually consider myself to be decent at reading, gathering and organizing information, but in this case I am at a total loss. I don't know how to overcome that obstacle. I'll take any tips on this that I can get.

    Thank you Sasha, I like your idea and hadn't thought of it. I'm going to look into whether any of the CFS specialists are willing to do a phone consult as an initial appointment. If anyone know of any who specialists who do this, please let me know.
  5. lnester7

    lnester7 Seven

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    I was debating. In my case staff was wonderful and design for people like me, so they gave me gatorade after blood draw, they had masagers recliners in waiting office. Doctor didn't tired me out because she knew it would wiped me out.

    I still don't have results back so I cannot tell u the end of my story. But just having somebody understand and know what they were talking about I am glad I did. The reason I did it is because my doctor slowly has diagnosed me, dysautonomia, hypothyroid... now going to neuro... At his pace has being 5 years and I knew I had this since 1-2years down being sick. So they say you have better chance when intervened earlier, so I decided to do it before I get more damage.

    I had VO2max and only having a top HR has helped enormously. I did get a 5 day relapse, but I was careful during trip so it wasn't permanent. I did Pedialite and Salty snacks. Asked for assistance. Stayed laying down at all times like a mad woman in the floor of the airport, used supporting stockings. Eat healthy while out..... I will keep you posted but so far I do not regret it. Waiting on my results.
  6. Ocean

    Ocean Senior Member

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    Thanks Insester7. I'm so glad to hear you were able to do this and are doing okay other than a 5 day relapse. How long was your travel time? How long did you stay there? Was it just one visit while you were there, or several? What is top HR? Do you mind saying who you saw (or PM'ing me)? If not, no problem.

    I understand what you mean about the slow pace. I've been really sick for over a year now and haven't made any progress in terms of testing and treatment. Part of that is because I was doing too badly to go to even local doctors for much of the year, but part of it is the slow pace without a specialist too. It would be great to see someone who tests for everything right away and has a bunch of different things to try from the start.
  7. lnester7

    lnester7 Seven

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    Saw Dr Ray (Nancy's Klimas )

    I saw Dr Ray (@ Nancy Klimas ). It took 2 plains. 4 hours total (45min layover). Two days consultation. First day had the VO2max test (about 1h), the second consultation (2h) with specialist and Blood work. I got there a day before, left day after so I booked enough resting time before and after.

    At the time my resting HR was 92. Brushing teeth 120. Shower 140. Maximum goes up to 212 according to HRM so not sure if it's true. But I got my Period while there, usually I get better during it. so when they did the reading I had 80 some on HR. I was feeling great while On Miami.

    Now resting HR is 84 and it hasn't been as high. I will keep you posted as I receive my results. I have a phone consultation the 21st of Feb so I don't have to go back just phone call for results. Please remind me to give u an update I have horrible memory.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Ocean,

    I sympathize with this dilemma as I faced it too. I decided to travel and it was very hard, but the testing and protocol I received have greatly improved me....to the degree that I got back last night from a 20 hour flight from Europe (my second). I was certainly exhausted but used the airline wheelchair service (which helps a huge amount as they even handle your luggage). I slept for 12 hours last night, but today, even though still tired, was able to go to the health food store, supermarket, garage, library, get a haircut and cook dinner.

    I could never have managed this without specialist care. And, unfortunately, the treatment I am receiving needs the monitoring and diagnostic skills of a specialist. It is not a one size fits all protocol but carefully tailored to each patient according to their test results.

    I had "gone it on my own" for years before I decided to travel. For me it has been worth it. Of course, not everyone gets as good results, but I am thankful that I have.

    Just another perspective.

    Best wishes,
    Sushi
  9. Ocean

    Ocean Senior Member

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    Thanks Sushi. When you were still doing poorly when you first embarked on seeing a specialist, how did you do on your initial visit(s)? Now you are better and better able to handle the exertion, how was it when you weren't? I spent about 6 months or more of the last year in two terrible crashes, each brought on by a tiny fraction of the exertion a specialist visit would require. So, I really want to go to a specialist and yet am also very torn given my past history.

    Thanks Inester. I'll try to check back in with you and see what you find. I hope it will be helpful for you.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Ocean,

    I was probably in better shape than you are when I first traveled to see a specialist but it still took about a month to recover after the trip to Europe and another month to recover after the trip back.

    This is a really hard decision to make. There are volunteer pilots who will fly patients to appointments--can't remember the name of the organization now. But if you do decide to travel commercially, it is easier if someone is with you and you make it clear with the airline what your needs are. They are usually very helpful and even upgraded me on this trip over the Atlantic.

    I stay at a hotel that caters to my doctor's patients re diet and will drive us to and from appointments...so there are some ways to make it a little easier. I was amazed that I wasn't bedbound today. Tired, but functional. Unfortunately there are so few specialists and so many patients scattered all over the world.

    Each time I see my doctor I meet someone from this forum in the waiting room!

    Best,
    Sushi
  11. Kati

    Kati Patient in training

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    In my opinion, going to see a ME expert is all worth it.

    Validation, and being in control are the great advantages that I see, on top of the obvious expertise of these physicians.

    Alll of my trips have been well worth my crashes and I'm embarking into treatments that will involve much more travels. All worth it.

    I have been ill for 3 years now, and cannot imagine "being left for dead" by local doctors.
  12. Ocean

    Ocean Senior Member

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    Thanks Sushi and Kati. I feel the same, that it would be worth it. But only if I could eventually recover from the crashes. Otherwise if it causes me to worsen in the long run, it seems it would be defeating the purpose of seeking help in the first place.

    The trouble for me is that I have not recovered lost functioning after past crashes and have become housebound as a result of them. They were each many months long and were caused by very, very minor exertion, nothing even close to what a trip would entail. My fear, based on that history and based on my current condition, is that I will become even more disabled on a permanent or indefinite basis from the exertion. And I don't have too much room for further disability, I'm pretty low as it is. So I'm torn between wanting the help and fearing it may have disastrous results, when I don't have much room to fall further.
  13. Kati

    Kati Patient in training

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    MY thinking is... i better hurry before i get worse. My health is ever declining months after months, it's scary. ut I am confident this latest expert can help me, and. I hold on to this hope.

    Of course everyone is different. What feels right to me may not be the right thing for others. Listen to that little voice inside.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I think that since you cra do not recover well, that you should probably try to get a little better before a trip. Would this definitely be by plane or a long drive or train?

    Are you looking to avoid prescriptions? Have you seen an infectious disease Dr? If you do not have any active infections that can be treated, then I would think that you would be limited on the nuber of prescriptions that you would need. therefore you have more Drs you could visit that might be able to help you out supplements and the like.

    GG

    PS I will await your response before I through out some names.
  15. taniaaust1

    taniaaust1 Senior Member

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    I never found a ME/CFS specialist (I was lucky to even work out what I had) in the 9mths before I hugely crashed and became completely bedbound at that time. I couldnt even get out of bed most of the time to take myself to the toilet let alone get myself to a doctor. If my children hadnt became my carers, I would of died.

    Its only been in recent years Ive been well enough to leave my house and go on doctors visits and only the past month or so in which Ive started to consider that I may actually be able to fly to see a specialist.

    In the past when I flew (I was dating someone overseas and he was going to take care of me), they held plane up and wasnt going to allow me to fly as my condition and what they could see with it worried the airport people. I started severly shaking and was so weak I had trouble holding my head up, even in one of their wheelchairs I couldnt hide how bad I was.

    I strongly suggest to you to not try to fly anywhere with your condition the way it is, unless someone is with you to help and also only if you are going to see a ME specialist who really knows his stuff and who you have good reason to know will be able to help you some.

    eg find out from other patients of his/her what he does and if YOU are likely to be helped by him. Most ME/CFS specialists have their own interests in this field and they all have their own theories of it.

    What treatments they will provide to you are often based on their beliefs of it. (So if you dont want to end up taking antivirals.. dont go to one who usually prescribes them to us etc).

    Ive personally found that most ME/CFS specialists are either more into the natural therapies treatments or strongly into heavy duty meds. So that may be something else to consider.. how you wish to be treated if you see one.

    Some CFS specialists arent used to "ME" patients and try to lump us into the rest of their "CFS" patients. A specialist like that pose a lot danger to us. I had one recently try to get me to do GET.

    You need to KNOW whatever the specialist you are planning to go to is like, do not trust other patients experiences of him/her unless their ME/CFS is like your own. If you do go to see one, make sure you see one who is used to seeing the "severe" subgroup.

    I agree with the others that a good ME/CFS specialist can be invaluable, but it ISNT worth it if you are going to be worst long term. A good ME specialist would be aware that many of those severe cant fly to get there or have to be accomindated in special ways.

    Seeing you have a supportive doctor. I suggest that you get people here (there is a mine field of knowledge here) to help you to help your doctor help you
    eg find info for you of things you can take to your doctor to try... rather then fly anywhere when you are as bad as you currently are seeing you do know the trip is likely to greatly set you back.

    Possibly just treating various symptoms you have and working out what those symptoms are coming from and coexisting ME issues eg are your orthostatic issues POTS? Are bowel issues IBS? etc etc, could well would be a good start and easiest for you to work out with your doctor. Keep it simple to not overwhelm yourself

    I myself cant currently get my head around stuff like the methylation protocol... hence I just simply did B12 injections for a while which did end up helping my brain function.

    Once you are doing all you can for your various symptoms..then look further and consider the various ME/CFS theories of causes which then you can try other treatements which will further help eg things like methylation protocol, antivirals or whatever

    What I did when very sick was just focus on ONE of my symptoms at a time and of trying to find something which helped just that one thing and as I couldnt easily search myself at that time.. I'd pose a forum question on that. You could start there.

    A doctor who is going to stand by you is the most important thing whether he's a ME/CFS doctor or not.

    Maybe an easier way for you would be to find someone on this forum who has ME/CFS like yours and start one to one communicating with them via pm on what their specialist has them on and why etc etc... Ideas to take back to your own doctor. Ask them if they know of online sources to take to your doctor.

    I suggest you start making a folder and work on building up info over time which will help you aid your doctor.

    Here's a start for you if you have sleep issues going on.. which you could copy and take to doctor. Dr Sarah Myhills advice
    http://drmyhill.co.uk/wiki/Sleep_is_vital_for_good_health_-_especially_in_CFS

    If you have orthostatic issues I suggest to copy Dr David Bells info on this for your doctor to consider http://www.oiresource.com/tresults.htm

    sorry this is so long. I hope you managed to get throu it.
  16. justy

    justy Senior Member

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    It is a really hard decision to make. For me seeing a DR in the UK who specialises in M.E has really helped (albeit slowly as using a natural approach) At first i was too ill to travel to see them, but after about 8 months on their supplements and following their advice i was well enough to go and visit them (just a very long car journey each way) I am now well enough that i would contemplate travelling further for a specialist who offers further testing and drugs (if i had the money)

    My (slightly sideways) suggestion is to consider doing the Mitochondrial Profile function test through Dr Myhills website in the UK - she is now offering it to overseas patients again. With the results you get a very detailed report with advice and a specific supplement regime, it is limited what she can do with follow up for overseas patients but if you followed her protocol for a while it may give you the chance to recover enough to travel.
    http://www.drmyhill.co.uk/wiki/Mito...r_overseas_CFS_sufferers_-_how_to_get_it_done

    http://drmyhill.co.uk/wiki/Mitochondrial_Function_Profile

    All the best, Justy.
  17. Ocean

    Ocean Senior Member

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    So true Kati. I try to live by this rule these days. It's the best guide. Thanks for the reminder.
    Fred1234567 likes this.
  18. Ocean

    Ocean Senior Member

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    Thanks Justy. This is very helpful.
  19. Ocean

    Ocean Senior Member

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    Thank you Tania. Very helpful and a lot of your advise is exactly what I've been thinking since starting this thread. I want to see if I can learn more about each specialist's approach and treatments because with the huge risk of seeing one, I have to do my best to at least make sure I"m seeing one that I think will have the most chance of helping me. I'm thinking of starting a thread on this and hoping people will share their knowledge.

    The other approach I'm thinking is what you said, trying to see how much my own doctor can do. Again, getting input from people here will be crucial since there is just so much information and so difficult to figure it out on my own.

    I have very strong hesitations about flying in my current state. A doctor within a day's drive that my husband could drive me to seems much more manageable.

    Thank you!
  20. Ocean

    Ocean Senior Member

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    Thanks GG, I don't need to avoid prescriptions. I'm very sensitive to both meds and supplements but willing to try things if a knowledgeable doctor think it's right for me and after research I feel okay with it. I prefer to go somewhere that I can drive to. If a flight is required then I will definitely have to wait and hope I improve some. Right now I"m having other health problems that are adding complications to my CFS. It may be that if I can resolve those I"ll be doing a bit better and more able to build up the strength to fly somewhere. I want to start a thread to learn a bit more about the different specialists and also about things my local doctor can do to help me while I look into specialists and hopefully build up the reserves to see one.

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