Keep Dr. Chia appointment or cancel??

[EMilo]

@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!!!

@Gingergrrl43 , interestingly, the first appointment I made was at the OMI and the first plan we made was to drive because I assumed I was far too sick to get on a plane. I don't know why I changed my mind about doctors. I don't know if I should have changed my mind! I will always wonder. I think I went with Dr. Chia because I had been following two other patients' experiences and that gave me some comfort. I think the plane might be foolhardy, but I weighed the pros and cons of a 3-day minimum drive there and back with the 3-hour + airport time journey and decided the burden on my husband to organise a rental and drive me and take more than a week off of work would be too much. I hope and pray I don't regret these decisions.

BTW, is that a Rhodesian Ridgeback in your photo? I have one, too. He's the love of my life.

 

[EMilo]

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

@justy , that's great advice. I ALSO thought about trying to see KBM in Reno (it's about the same distance from Seattle), but I decided against it based on cost. I don't know if that was smart, either. I actually think from what I've read/seen that he might be one of the smartest experts out there. I think I'd like him. I'm very interested to know what he does for you!

 

[justy]

Is that a dog or a horse?...

 

[Gingergrrl]

@Gingergrrl43 , interestingly, the first appointment I made was at the OMI and the first plan we made was to drive because I assumed I was far too sick to get on a plane. I don't know why I changed my mind about doctors. I don't know if I should have changed my mind! I will always wonder. I think I went with Dr. Chia because I had been following two other patients' experiences and that gave me some comfort. I think the plane might be foolhardy, but I weighed the pros and cons of a 3-day minimum drive there and back with the 3-hour + airport time journey and decided the burden on my husband to organise a rental and drive me and take more than a week off of work would be too much. I hope and pray I don't regret these decisions.

BTW, is that a Rhodesian Ridgeback in your photo? I have one, too. He's the love of my life.

@EMilo First, the doggie in my photo is a dachshund and super tiny compared to your dog! Thank you for sharing the photo and I love dogs.

I hope I did not confuse you with my comments and as far as which doctor to see, you should do whatever feels right in your gut and heart. A three day drive to OMI would be impossible for me and for us it will only be about a six hour drive. I think it is wise to have your husband go with you and it sounds like you made a well thought out decision.

As far as KDM in Reno, that was actually my first choice but after a full week of trying (now two weeks have past) I never received a response to any of my e-mails or phone calls. The woman at WPI said she did not know when KDM would be back in Reno and all coordination was through his assistant in Belgium who to this day has never gotten back to me. If I had any possibility of seeing him in Belgium, I would but that was not an option for me. I think at some point in the future, he may make more regular trips to Reno and there will be a person in Reno who can actually schedule the appt but that is not the reality at this time.

When I called OMI, I got a live person immediately and an appt within 2-3 wks and it all just fell into place and felt like it was meant to be. It sounds like that is what happened with you for Dr. Chia and you should trust your instincts. Please keep us posted how it goes!

 

[taniaaust1]

@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!

We should turn the word issues into an ongoing forum game everyone can play.. of guess the word. Turn the frustrating word problems into fun.

 

[taniaaust1]

@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!

I'm willing to give that one a go here and see if anyone will play the guess the word game when I get stuck. Will I remember thou to use the word "balloons" lol.. and will others who read this post remember it?

 

[taniaaust1]

I hope you dont let fear and worries on have I go it right?, to lead you to cancel when you obviously did think it was the right choice originally and nothing really has changed to have you change that decision. Its not good to be making decisions out of fear and while in confusion.

Also I suggest not to guess what he may or may not think of your test results.

Anyway.. best wishes for whatever you end up doing.

If its going to stress you which obviously it is, I suggest not to do the testing out the mold stuff on this trip esp since you are already so concerned over seeing a specialist. Try to keep your stress levels as low as you can with the appointment. Your thought to try it when closer to home probably is a good idea.

 

[WillowJ]

BTW, is that a Rhodesian Ridgeback in your photo? I have one, too. He's the love of my life.

some of my cousins have a Ridgeback very nice dog!

All the best with your visit. Like someone said on the first page, no one can guarantee results.

Seems like you know what's right for you and your situation.

 

[justy]

I've been trying to find a photo of my dog. He's very small and very scruffy and the best dog I have ever lived with!

 

[NK17]

Here's my perspective on the "conundrum" that you're facing @EMilo, hopefully I'll be able to ease some of your doubts .

Back in 2011 when I realized that I might have been suffering for decades with ME (with some preliminary blood tests showing high IgG titers to many if not all herpes viruses and a brain MRI which showed several white matter lesions plus a long list of symptoms coupled with a long indicative medical history) and after quite a few doctors telling me that nothing abnormal or wrong was found, I started to search and make calls to ME/CFS experts' clinics.

The first one was Dr. Montoya's @ Stanford, at the time they told me 3 to 4 years of waiting ... I was so desperate to be seen by a real specialist that I didn't even bother having my name on his waiting list (a fact I later came to regret!).

On to the next one: Dr. Kogelnik @ OMI, appt scheduled in 2/3 weeks, I was extremely happy. I flew by myself from Los Angeles to MV, back then I was "functional" and totally ignorant about the real true meaning of the ME beast. I remember during that 1st 1 hr and 1/2 visit dr. Ko asking me why I had chosen him and half jokingly answering that he was the first available, the youngest and probably the brightest and him saying that he hoped to be the best for me as well, to which I replied that it was up to him to prove it . I was not only listened, but validated and empowered by him. I rarely remember such a positive feeling after a visit with a doctor in any specialty ...

He has been my ME doctor since then. We've been trying a first AV treatment back when I was in a better place, now I'm on Valcyte.

I also went to see Dr. Chia, referred upon my request by Dr. Kogelnik. Dr. Chia is basically around the corner, for los angelinos .
He was great, also very validating and full of care and advice (pace, rest, pace and rest).
He ran some blood tests prior to our visit, mainly enteroviruses (echo and coxsackie viruses) and suggested I get a gastroscopy with additional tissue biopsy to be analyzed by EVMed (his research lab).

Many of the enteroviruses IgGs came back very high, he also checked CMV (cytomegalovirus, one of the herpes family).
He proposed his proprietary blend of herbal antiviral (which I bought but has not started yet).
Dr. Chia accepted my insurance plan, contrary to Dr. Kogelnik.

I decided to continue to stick to Dr. Ko's treatment plan for many reasons: my own specific medical history, family members that Dr. Chia does not see due to age/policy reasons, research projects in the pipeline etc.

I think Dr. Chia is a great ME/CFS doctor, maybe his only 'flaw' might be his involuntary isolation in the field (due to absolutely no pharma interest in research for AV therapies against enteroviruses).

I would suggest that you go see him, try to arrange the best possible flight and help for the trip. I'm pretty sure you won't regret it.

I'm actually thinking of going back to see him and add his treatment to the Valcyte.

Good luck and please report back to us as much as you can and wish to share .

 

[Gingergrrl]

@EMilo on a side note, I wanted to tell you I read your blog and it is incredible. Very well written (and your garden is beautiful!). I am so sorry for all you have been through.

 

[NK17]

@EMilo on a side note, I wanted to tell you I read your blog and it is incredible. Very well written (and your garden is beautiful!). I am so sorry for all you have been through.

I second @Gingergrrl43. I'll go back to read your blog as soon as I feel better.

 

[EMilo]

@EMilo on a side note, I wanted to tell you I read your blog and it is incredible. Very well written (and your garden is beautiful!). I am so sorry for all you have been through.

@Gingergrrl43 what?! You do?! I really didn't believe anyone read my blog except my family and a few select friends. Thank you, I'm extremely flattered. I've been posting less recently -- or, at least, putting less effort into it -- because I'm boring myself, so I must be boring readers! But I have so much to talk about, so, as soon as I get the energy, I am going to write more. THANK YOU FOR SAYING THAT! That was the push I needed to feel like I exist in the world again! xo

 

[EMilo]

Something threw me for a loop yesterday. I saw my therapist, who happens to be from LA. He says I can't imagine how big it is. He says, staying in Hermosa Beach (for example) and taking a taxi to Torrance to see Dr. Chia really isn't easy or close by. He said it would be astronomically expensive. He also said don't even think about taking a taxi from LAX to wherever I'm staying in that area. I said, "What about renting a car?" and he said I'd be nuts. You have to take a bus from the airport to the car rental area, the airport is like a city, driving is sheer hell and, since my 70-year old Mum hasn't driven in years and lives in Ireland, he really wouldn't recommend her tackling LA.

I guess it's not like Seattle. You leave the terminal, get in a taxi and go home. It's expensive, sure, but it takes half an hour to get to North Seattle and costs $50. He just shook his head. "You have no idea. Everyone just gets picked up at LAX by a friend or family member...."

I'm so sick, I'd have to be in a wheelchair, I have never, ever not laid down to rest throughout the day in the last two years.... This, out of all the considerations, seems like the most likely to derail my plans. The part that sounds the most daunting, for some reason, is getting off a gruelling plane flight, collecting luggage, and then having to negotiate luggage, me, wheelchair and bus to rental car area and THEN driving to a foreign area, foreign house, not being able to just get somewhere and crash.

Yikes, I'm rethinking everything. Again. Maybe we could drive down and park an RV in Dr. Chia's parking lot. Maybe I should fly to see someone in a more manageable town! My therapist is a big fan of Dr. Klimas and Dr. Cheney... it never occurred to me that flying further to a place that's NOT LA might be easier than flying to LA because its close.

Thank you all so much for giving me a safe place to be freaked and indecisive. x

 

[NK17]

I completely understand your freaking out @EMilo and agree with your therapist's description of LAX, cab rides to and from Torrance etc.

My mom is also visiting from Europe and in her early seventies, but luckily for me she is driving, albeit reluctantly.

I always think that PWME should not only have centers of excellence (clinics specialized in dx and treatments), but also community housing near the clinics!

It's one of my dreams to found with other patients the first Casa de ME , hopefully I'll be around to first see the centers of excellence.

 

[Gingergrrl]

@Gingergrrl43 what?! You do?! I really didn't believe anyone read my blog except my family and a few select friends. Thank you, I'm extremely flattered. I've been posting less recently -- or, at least, putting less effort into it -- because I'm boring myself, so I must be boring readers! But I have so much to talk about, so, as soon as I get the energy, I am going to write more. THANK YOU FOR SAYING THAT! That was the push I needed to feel like I exist in the world again! xo

@EMilo I started reading your blog when I noticed you included the link on this thread and once I started reading, I really enjoyed it. I was very impressed b/c I could tell how much effort you put into it and I could relate to what you shared.

Please don't worry that it is boring b/c it is NOT and I found it motivating and inspiring. I understand what you mean about feeling like you matter in the world b/c I have struggled with this since leaving my job due to ME/CFS as my job gave me so much joy and meaning.

I think right now our meaning is to help each other out on the board and all you guys have helped me so much! So I hope you keep writing the blog when you are able.

 

[Gingergrrl]

@EMilo I wanted to add my thoughts re: LA as I have lived here my whole life. Even though the airport can be daunting, I think if you pre-arrange wheelchair service with the airline that they also help w/your luggage.

You can get a taxi directly at the airport but taking it to Hermosa Beach or Torrance will be expensive. However it may also be worth it for a special trip like this. You can also use "Uber" car service if you have an I-phone which from LAX might be easier although I have never done it from LAX but my husband has and it worked well.

I would book a hotel that is the closest possible to Dr Chia's office (I do not know that area but maybe his office can give you some referrals.) Also, why is your mom coming now instead of your husband? I think I missed that part.

 

[NK17]

Yes check out Uber car rides services as @Gingergrrl43 said.

I've used them in SF when I went to the Sicca Clinic to rule out Sjogren @UCSF back in '12.

Might need their services again in L.A.

 

[Sushi]

...The part that sounds the most daunting, for some reason, is getting off a gruelling plane flight, collecting luggage, and then having to negotiate luggage, me, wheelchair and bus to rental car area and THEN driving to a foreign area, foreign house, not being able to just get somewhere and crash....

My experience with airport wheelchair service is that they take me, and my luggage, to my next form of transportation--taxi, van, whatever. I believe that some airports have better service than others though, so maybe someone who has traveled in and out of LAX could comment.

Best,
Sushi

 

[Gingergrrl]

My experience with airport wheelchair service is that they take me, and my luggage, to my next form of transportation--taxi, van, whatever. I believe that some airports have better service than others though, so maybe someone who has traveled in and out of LAX could comment.

Best,
Sushi

I have flown in and out of LAX a million times but it was all in my healthier days and have never used a wheelchair there. I am wondering if it is better to check with the individual airline versus the airport although I really don't know? If I were to fly right now I would need a wheelchair so it is good info for me, too!