Keep Dr. Chia appointment or cancel??

[EMilo]

I have an appointment with Dr. Chia in one month and I can't decide whether to keep it. I'm in Seattle, I've been sick for 2 years and 8 months and totally housebound for the last 22 months.

I haven't traveled further than one hour from my home, so I have no idea what a plane ride to L.A. will do to me, plus foreign bed, food etc. And the financial cost when I'm unemployed...

I feel like I should see an M.E. expert, though. Shouldn't I? SHOULD I? My indecision is crippling.

Any gut instincts out there? I'd love some advice.

 

[heapsreal]

Definitely keep it. He is probably the only cfs doc that really understands enteroviruses and knows how to test for them accurately. At least that way you can at least rule enteroviruses in or out. Plus I believe cost wise he is a lot more affordable.

 

[WillowJ]

Going to see an ME expert, even just for some tests and a firm diagnosis, was really helpful for me. I wasn't able to continue the plane trips, but SeaTac to LAX sounds like it could be manageable (might even get a direct flight?).

I would say, get a wheelchair (plan to tip the attendants). However depending on the airport, this might not remove all (even "long" stretches of) walking, but there might be an electric cart to fill the gaps.

I did not find hotels too hard (they manage the linens!), but I was traveling with my carer, and so someone else was in charge of luggage, checking in, food, etc. We got a hotel with kitchenette and mostly ate in.

There are many levels of housebound, I found. I have been housebound/sofabound and able to travel on rare occasions, and housebound/sofabound and not able to travel (barely even, or some weeks not even, in my own town even 15 minutes away).

Ultimately you have to go with your own gut.

I totally sympathize with the indecision. I wasn't the most decisive person in the world before the ME, but this disease has made it 50 times worse.

 

[heapsreal]

Even a phone consult maybe, he might be able to sort some testing out. I know a few aussie people who have sent biopsies over to chia and got testing. Even something like testing can go a long way, then maybe a local doc might be more willing to treat you on these tests or chia's recommendations??

 

[taniaaust1]

I suggest to weigh in the facts of your case

1/ You've been sick now for almost 3 years, so at this point are unlikely just to get better without the help of a ME specialist (many seem to get better in the first couple of years but seeing you havent, you are less likely to improve without help... the longer you leave it, the harder it may be).

2/ He's a specialist who does find things which may be treated.

3/ You are still capable of leaving your house currently, based on that it may be worth it rather then not go and find out you end up completely bedbound in another 6mths (and if that was to occur, then you would be really really stuck!). If you are slowly truely improving instead.. this ignore this point 3 and if that was the case, it may be best to wait to see what improvement does and go and see a specialist when a bit better.. but if you are just holding in there, you currently anyway are at risk of any time going either direction if you are doing nothing to help yourself.

4/ Consider too what you current dr is like. If you get worst will he/she be willing to give you things to help you? eg if you develop complications eg POTS or other things.. will he/she be willing to treat you? (im very screwed in this area and as I left things too late, I cant fly anywhere to see a ME specialist I need and cant get to the other specialists I need and keep ending up in hospital where they dont know what to do with me).
................


Unless you are actually slowly getting better (rather then just better some by something like improved pacing).. I think you should really try to get there. There are things you could do to make it less of a risk to you.

- Take someone with you (so you can have another do as much of your running around as possible) and make sure you tell the airport you need a wheelchair.

 

[justy]

I've spent the last 6 years more ill than at any time in the past 20 of my disease process waiting to get better by some kind of miracle. Tinkered with pacing and supplements etc, but in the end decided I HAD to try a specialist that I knew was doing the right testing and getting results for his patients.

I'm so glad I decided to see a specialist- and it looks like my testing might be showing an area for treatment. Yes it was expensive and the travelling was hard on my body, but I cant spend any more of my life wondering what is REALLY wrong with me.

Dr Chia looks great to me - I would see him in a flash if I was nearer (not to say im not happy with my new doc). But I would say that if you are that sick you cannot travel alone. you need a carer to go with you. You need to be organised

1. Take your own wheelchair with you so that you can use it at all times - tell the airline you need to use your wheelchair. this is one reason you need a carer- to push for you.

2. book somewhere to stay where it wont be too noisy - tell them in advance you need a quiet room, not near generators, the bar etc.

3. book somewhere that does food and or room service.

4. Take something like valium for the travelling - for me it reduces noise and light and movement issues and makes me feel relaxed about it all.

5. Let the carer do everything - find food, order taxis, push the wheelchair etc.

6. I took my husband into the consult with me - I was glad I did as I hadn't realised how wiped out I would be by the travelling and I was completely brain dead for the appt.

7. make sure you have snacks, coconut water, sunglasses, sunhat, blanket, comfy jumper, eye mask and ear plugs.

8. prepare for the appointment. I wrote a short one page history of my condition to show him and a brief overview of any treatments tried so far and a list of any tests I have had done with the results. Then I prepared questions that I wanted to ask.

Hope this helps and good luck!

Justy.

 

[SDSue]

I totally sympathize with the indecision. I wasn't the most decisive person in the world before the ME, but this disease has made it 50 times worse.

Yes!!!! Once I've made a decision, I have to remake it daily, as I have no recollection of the processing involved in that decision. It's one of my most disabling cognitive issues.

I face the same thing prior to my visit to a bonafide ME/CFS specialist. I had many unfounded fears - fears I'd get worse from the travel; fears they'd find nothing wrong and I'd be told I was nuts (again?); fears I was wasting yet more of my dwindling financial resources.

Perhaps the biggest fear, looking back, was that they'd be unable to help me and I'd be completely out of options.

Go! Many others are unable to get to him and would love the chance. You've still got the chance. Take it! (and then report back to us with all the good news!)

 

[EMilo]

Oh my god... OMG OMG! @heapsreal @justy @taniaaust1 @SDSue @WillowJ You are all so wonderful and I value your input and advice so much!!! And it's also terrifying! What I mean is, I will take your advice but, until this moment... this second... I was pretty sure I wouldn't go because I have seen FORTY healthcare practitioners and they have ALL let me down. If no one can fix this, why bother trying and risk getting worse?? But, you have convinced me and I am so very grateful for the nudge (one way or another). Now I'm scared sh*tless. Seriously. Suddenly I have so much to plan.

Can I please ask for one more piece of advice? I tested high on a urine mycotoxin panel and my house was fairly high on an ERMI test, so I've always wanted to get away from here to see if I improve away from this home/climate/humidity (never left my house since being ill). Obviously, it would be ideal to go camp in the desert or something, but perhaps going to see Dr. Chia would be a way to kind of test it out if I stayed in LA for a week.

So, my question is, does your gut instinct say, find a rental (AirBnb, VRBO) for a week near Dr. Chia (Redondo/Hermosa Beach?) or fly down for 2 days, stay in a hotel and come back? If I do the former, my mother can come with me (she's 70, so not ideal, but someone!). If I do the latter, my husband can come with me.

THANK YOU!!

 

[justy]

Glad you have made a decision, and sooo glad to hear you have someone to go with you. If it where me, and I could afford it etc I would stay near the beach self catering, for as long as possible. Of course you could get a moldy house near the sea, but many people feel better at the beach anyway. That way you can also rest either side of the appointment without getting so worn out.

A two day trip may be too much for you if you are not used to travelling. Of course if your mother comes she may not be able to do the wheelchair pushing for you 9or you may be slight and she may be fit and healthy - not wanting to make any (sorry cant find the wiord - brain gone blank)

Let us know what you decide and how you go.

 

[Sushi]

I have an appointment with Dr. Chia in one month and I can't decide whether to keep it. I'm in Seattle, I've been sick for 2 years and 8 months and totally housebound for the last 22 months.

I haven't traveled further than one hour from my home, so I have no idea what a plane ride to L.A. will do to me, plus foreign bed, food etc. And the financial cost when I'm unemployed...

I feel like I should see an M.E. expert, though. Shouldn't I? SHOULD I? My indecision is crippling.

Any gut instincts out there? I'd love some advice.

I also vacillated for quite a while before biting the bullet and traveling to see an ME expert. Wish I'd done it years earlier! I had to make a 17 hour flight to Europe and knew that jet lag was going to be tough. But I used the airport wheel chair service, taxis to the hotel which is very close to the clinic and provides shuttle service to the clinic. I arrived a few days early to rest up and it was all OK though I did feel like crap.

I didn't suffer any long-term effects from the travel but I allowed plenty of time and didn't do anything but go to the clinic and eat! And, it was so worth it! Why didn't I do that years ago? I just wasn't clued up.

Sushi

 

[waiting]

Oh my god... OMG OMG! @heapsreal @justy @taniaaust1 @SDSue @WillowJ You are all so wonderful and I value your input and advice so much!!! And it's also terrifying! What I mean is, I will take your advice but, until this moment... this second... I was pretty sure I wouldn't go because I have seen FORTY healthcare practitioners and they have ALL let me down. If no one can fix this, why bother trying and risk getting worse?? But, you have convinced me and I am so very grateful for the nudge (one way or another). Now I'm scared sh*tless. Seriously. Suddenly I have so much to plan.

Can I please ask for one more piece of advice? I tested high on a urine mycotoxin panel and my house was fairly high on an ERMI test, so I've always wanted to get away from here to see if I improve away from this home/climate/humidity (never left my house since being ill). Obviously, it would be ideal to go camp in the desert or something, but perhaps going to see Dr. Chia would be a way to kind of test it out if I stayed in LA for a week.

So, my question is, does your gut instinct say, find a rental (AirBnb, VRBO) for a week near Dr. Chia (Redondo/Hermosa Beach?) or fly down for 2 days, stay in a hotel and come back? If I do the former, my mother can come with me (she's 70, so not ideal, but someone!). If I do the latter, my husband can come with me.

THANK YOU!!

If you are considering a "mold avoidance test" while you're there, you may wish to consider bringing only new clothes and leave any belongings that have exposed to the house at home -- just for this trip. Otherwise, they could interfere with your test. You can search here on PR for "mycotoxins" and you'll find lots of advice. Good luck!

 

[taniaaust1]

Glad you have made a decision, and sooo glad to hear you have someone to go with you. If it where me, and I could afford it etc I would stay near the beach self catering, for as long as possible. Of course you could get a moldy house near the sea, but many people feel better at the beach anyway. That way you can also rest either side of the appointment without getting so worn out.

A two day trip may be too much for you if you are not used to travelling. Of course if your mother comes she may not be able to do the wheelchair pushing for you 9or you may be slight and she may be fit and healthy - not wanting to make any (sorry cant find the wiord - brain gone blank)

Let us know what you decide and how you go.

I'd say similar to Justy. There is now way I'd travel somewhere for an appointment and then almost right back again without having a day or two rest before I travel again home. Trips like this need to be all paced out. You may be able to hire a wheelchair (I dont know about your country but here in Australia some pharmacies hired these out).

Justy I think the word you were looking for is "assumptions" (its only just come to my brain how to spell it! I was trying to spell it starting with an "e" lol)

 

[justy]

@taniaaust1 - thanks so much for the word - you got it absolutely right. Hate it when my brain does that, even looking at the sentence this morning I couldn't work out what the word was, but assumptions is perfectly correct.

I think we need a special word on PR to add in the text when that happens as it happens to me all the time when typing and in the end I sometimes just give up and don't respond. I guess we could juts put a ------- (blank?) so long as everyone knew what it meant it might work - although if people start inserting their own words it could be a laugh!

 

[EMilo]

Glad you have made a decision, and sooo glad to hear you have someone to go with you. If it where me, and I could afford it etc I would stay near the beach self catering, for as long as possible. Of course you could get a moldy house near the sea, but many people feel better at the beach anyway. That way you can also rest either side of the appointment without getting so worn out.

A two day trip may be too much for you if you are not used to travelling. Of course if your mother comes she may not be able to do the wheelchair pushing for you 9or you may be slight and she may be fit and healthy - not wanting to make any (sorry cant find the wiord - brain gone blank)

Let us know what you decide and how you go.

Yes, that was my fear: getting a moldy house, spending half my savings on expensive Cali rental and getting worse... But, I think I should try it. I only weigh 90lbs and my mother is much healthier than I am, so it'll be hard for her to push me, but hopefully not too hard.

 

[EMilo]

I also vacillated for quite a while before biting the bullet and traveling to see an ME expert. Wish I'd done it years earlier! I had to make a 17 hour flight to Europe and knew that jet lag was going to be tough. But I used the airport wheel chair service, taxis to the hotel which is very close to the clinic and provides shuttle service to the clinic. I arrived a few days early to rest up and it was all OK though I did feel like crap.

I didn't suffer any long-term effects from the travel but I allowed plenty of time and didn't do anything but go to the clinic and eat! And, it was so worth it! Why didn't I do that years ago? I just wasn't clued up.

Sushi

@Sushi , now this brings up another concern I have. I chose Dr. Chia because he is the closest doctor to me, but I wonder... if I'm going to get on a plane, should I go to Enlander, Klimas, KDM, Myhill...? (And, it just occurred to me that, I could stay with my brother if I got in to see Dr. Enlander... hmmm... probably should have thought of this 6 months ago). Was geography a good reason? But I also liked everything I've read about Dr. Chia. I think I "fit" his theory, although I don't think my viral titers are high enough to be meaningful.... My appt is 4pm on a Friday, does that work against me? I have so many nagging concerns...

Thanks for weighing in, though!!

 

[EMilo]

If you are considering a "mold avoidance test" while you're there, you may wish to consider bringing only new clothes and leave any belongings that have exposed to the house at home -- just for this trip. Otherwise, they could interfere with your test. You can search here on PR for "mycotoxins" and you'll find lots of advice. Good luck!

I know, this is something I'm battling with. To do a "proper" mold avoidance test, it would add an incredible level of difficulty (I'm already thinking, I need my pillow to be able to sleep with my crappy neck, I need my water filter, I need this and that...). Plus, asking my husband not to bring anything... or my mother (who definitely comes from a moldy house)... maybe I should just do a "somewhere different" test this time to alleviate the stress of traveling and then do a "don't bring anything" test closer to home...

 

[Sushi]

@Sushi , now this brings up another concern I have. I chose Dr. Chia because he is the closest doctor to me, but I wonder... if I'm going to get on a plane, should I go to Enlander, Klimas, KDM, Myhill...? (And, it just occurred to me that, I could stay with my brother if I got in to see Dr. Enlander... hmmm... probably should have thought of this 6 months ago). Was geography a good reason? But I also liked everything I've read about Dr. Chia. I think I "fit" his theory, although I don't think my viral titers are high enough to be meaningful.... My appt is 4pm on a Friday, does that work against me? I have so many nagging concerns...

Thanks for weighing in, though!!

I'd say (for what it is worth! ) that trying to second guess yourself on these questions at this point, isn't worth the mental stress! It sounds like you chose Dr. Chia with both a rational and "gut" response. We all know that he is a good doctor. What you don't know is whether he will, in your case, find enteroviruses--but why not find out?

Best wishes for this adventure,
Sushi

 

[EMilo]

@taniaaust1 - thanks so much for the word - you got it absolutely right. Hate it when my brain does that, even looking at the sentence this morning I couldn't work out what the word was, but assumptions is perfectly correct.

I think we need a special word on PR to add in the text when that happens as it happens to me all the time when typing and in the end I sometimes just give up and don't respond. I guess we could juts put a ------- (blank?) so long as everyone knew what it meant it might work - although if people start inserting their own words it could be a laugh!

@justy and @taniaaust1 , when Ireland switched from miles to kilometers, my step-father used to call them balloons, as in, "Oh look, Galway is only 37 balloons away, whatever that means." (Because we couldn't wrap our heads around kilometers.) It has since become the catch-all phrase for things we don't understand. We could use it here: "I don't want to make.... balloons... that your mother can't push a wheelchair." Haha!

 

[Gingergrrl]

@Sushi , now this brings up another concern I have. I chose Dr. Chia because he is the closest doctor to me, but I wonder... Was geography a good reason? But I also liked everything I've read about Dr. Chia. I think I "fit" his theory, although I don't think my viral titers are high enough to be meaningful.... My appt is 4pm on a Friday, does that work against me? I have so many nagging concerns...

@EMilo I am joining this thread late but wanted to validate your concerns and offer another perspective. You said that you chose Dr. Chia b/c he is the closest to you (in Seattle) and that maybe geography wasn't the best reason to pick him. But you also said that you feel like you "fit" his theory and you already have your appt scheduled.

So, here is my two cents... I live in L.A. and I looked at Dr. Chia (based on closeness and geography) and decided not to schedule an appt with him b/c for myself, I did not feel that I "fit" his theory. I looked far and wide at doctors across the country and ultimately decided on the Open Medicine Institute in No CA (Mountainview near Palo Alto) which is closer to Seattle for you than coming to L.A.

However, I am too ill to fly and will be making the drive with my husband. In your case, since you are already getting on a plane (and all in the same time zone) the extra hour to L.A. probably will not make any difference. I would say that if you feel that Dr. Chia fits what you are looking for, then I would keep the appt (and that is separate from basing just on geography.) But if in your heart, you feel his approach does not fit what you are looking for, then I would keep investigating.

Hope I did not confuse you more and best wishes!!!

 

[justy]

Have you looked at the MECFS alert interviews with Dr Chia? he seems great to me just from watching those. He also seems to have helped quite a lot of [people.

One of the questions I always now ask a new doctor is 'will you try and find what is wrong with me and treat me NO MATTER WHAT I HAVE WRONG' this is to weed out the doctors who will only try and fit you into their pet theory. You can ask him 'what happens if you don't find an enterovirus in me...will you still treat me...what else will you be looking at/for?' if he then doesn't find anything from testing and you didn't like his answers then you don't have to go back.

The waiting list for most M.E docs can be long so it might be worth keeping it - especially as you initially thought you wanted to. (having said that I don't think KDM in Reno has a long wait - he is now my doctor, but I see him in Europe and he assured me that he would do everything possible to get to the bottom of my illness and treat whatever he could find)

If you are so sick you were considering not even going to see him then I wouldn't consider complicating matters by trying to do mold avoidance as well or worry about anything else. I would just go, with enough time either side of the appointment to rest up nearby. There is no point in stressing out about all the rest of it.

Once I made my apt to see KDM I felt a great sense of relief as it meant I could stop trying things and looking at different ideas all the time. I have decided to be guided by him, after all why go and see him if I don't follow his advice right? so I have stopped worrying about what supplements to take or what theories 'fit' my illness. I will wait and see what he thinks I should do first.

Take care
Justy