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Keep Dr. Chia appointment or cancel??

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

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I'm not sure that the airline can predict what the service will be like at an individual airport. I use wheelchair service whenever I fly and my impression is that the "pushers" are airport employees, not airline employees. Could be wrong though.

    Sushi
     
    WillowJ likes this.
  2. WillowJ

    WillowJ Senior Member

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  3. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @EMilo You hadn't posted in a while and I wanted to see if you were okay and curious if you decided re: Dr. Chia? No worries or pressure to respond at all, I was just thinking about you and hoped you are doing okay.
     
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    @EMilo, it has been about 20 years since I vacationed in L.A., but I took a shuttle/van from the airport to my hotel. Your hotel should be able to tell you if they have airport shuttle service and what the fee is.
     
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  5. taniaaust1

    taniaaust1

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    As Little Bluestem said, when I travelled in the past many hotels have shuttlebus/van services which can pick one up from the airport and take you straight to the hotel It may be a ton easier if you find a hotel which say they can offer you this service, so you dont have to worry so much.
     
  6. SOC

    SOC Senior Member

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    @EMilo, to get airport wheelchair assistance you just have to add a request for it to your airline reservation. It's common, so there should be an easy way to do it.

    In Seattle, ask for it when you gat check your luggage if they haven't already set it up. The assistant will help with luggage and security and take you all the way to the plane door.

    In LAX, a wheelchair assistant will meet you at the plane door, take you to luggage claim, and help you to your ground transport.

    I'd arrange to stay in a hotel with an airport shuttle to simplify ground transport away from the airport.

    Your hotel can probably help you with transport from there to Dr Chia's.
     
    justy likes this.
  7. EMilo

    EMilo Elizabethmilo.com

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    So sorry I've been absent, I had a really rough few days. So, I do think I'm still going to go and I am ETERNALLY GRATEFUL for your help and advice. I researched hotels with kitchenettes (because I'm on a very restricted cook-your-own meals and look-at-every-ingredient diet) and they seem a bit dodgy (reviews of being run down and near oil refineries and stained carpets etc.). I think I'm going to stay a full week to rest before and after travel and also just to be away from my house for a week.

    AirBnb and VRBO rentals in ideal places like Palos Verdes (I was told it is on a hill and avoids the mold of beach locations and also the smog of inland locales) are ridiculously expensive. I found a rental in Manhattan Beach which looks on the map like it is about halfway between LAX and Torrance. Screenshot_2014-07-07-12-15-40.png Safe? Near enough to stores or the ocean if my mother wanted to venture out? I'm thinking, if it works, we can take a taxi to the airport and Dr. Chia and grocery stores. THANK YOU!
     
    Last edited: Jul 13, 2014
    justy likes this.
  8. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @EMilo It was good to hear from you and am glad that you decided to keep your appt with Dr. Chia. I know that sometimes the hardest part is just making the decision (at least for me!) I wish I knew the area better to give you some feedback but you are smart to find a rental with a kitchen and fridge so you can bring/prepare the foods that you are able to eat. I am leaving next weekend for my appt w/CFS specialist and will also be looking for hotel with fridge (as I am also on very restrictive diet from my ND and have two supplements that have to be kept in the fridge.) It is such a hassle to travel with all these meds & supplements but I keep telling myself that it will be worth it in the long run as I know it will be for you, too. When do you travel?
     
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  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Taxis can be expensive. Could you get a shuttle to a hotel near your rental, then take a taxi from the hotel to the rental? You would need to be sure that the shuttle could accommodate your wheelchair.

    Your mother might be able to use buses and/or the subway to get around. I used both when I was vacationing there.
     
  10. Sasha

    Sasha Fine, thank you

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    @EMilo - I haven't followed all of this thread and sorry if I'm repeating a suggestion already made, but have you contacted Dr Chia's office for advice about accommodation? I'm sure he must have a lot of very sick patients with similar needs and they may know of suitable places for you to stay (and will be able to advise on what areas are also safe and pleasant).
     
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  11. EMilo

    EMilo Elizabethmilo.com

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    @NK17 , sorry I haven't answered properly. Thank you so much for your message. You've got me thinking about Dr. Kogelnick again for sure. Honestly, I think I didn't choose him because he seemed so young (which can be a plus) and I didn't know anyone who had seen him. I have talked to/read about 3 or 4 people's experiences with Dr. Chia, so it seemed a safer bet.

    Unbelievably, my insurance runs out the day before my appointment with Dr. Chia, so regardless of what I do, it'll be out of pocket. I know you can't tell me which one you would recommend for me between Dr. C and Dr. K, but.... which one would you recommend?! I know Dr. Chia is going to suggest Equilibrant, perhaps a biopsy, maybe antivirals (but I don't think my titers will be high enough) and tell me I need to pace myself more. What will Dr. K have to offer? That extra hour on the plane does make a huge difference and I'm not committed to Dr. Chia yet -- I could reschedule to buy more time.

    Thank you again!
     
    NK17 likes this.
  12. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @EMilo, If you don't mind saying, when is your actual appt scheduled and what timeframe are you looking at? The reason I ask is that I am going to Open Medicine Clinic for my first appt next week (with Dr. Kaufman who is Dr. Kogelnick's partner) and will be able to give you a full report after that which may help your decision. I am so sorry about your insurance and I will soon be in the same boat (around the end of August) so am trying to do as much testing while I still have good insurance. I am also going to send you a PM b/c I have a question re: something from your blog.
     
    NK17 likes this.
  13. BFG

    BFG

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    Hi Emilo,

    I saw Dr. Chia last year around the same time. He is really a nice and thorough doctor. He found semi highnviral titers and subclass 3 def and low cd4 count. Even though i was negative for entervirus via titers he still believed i had an enteroviral infection from my symptoms and history. The only thing he could offer me was a trial of equilibrant.

    It was very harsh at first and could only start at 1/4 pill but by the end of the first month i started getting better. By the third month the calcium in it was too much and my excitotoxicity (ear ringing, headache, dizziness, anxiety, blurry vision)became too much and i can no longer tolerate it. I wish they would take out the calcium becuase that has been the best thing that has helped me.

    I brought up the possiblity of mold exposure, but he dismissed that and said he believed cfs was due to a viral infection. I also tested my home and have a semi high ermi score.

    With your apt at 4pm youll most likely be the last patient of the day. The good thing is He takes his time with every patient the bad is you might be left waiting longer than usual. My appt was at 4 o clock and didnt see him until 5:30.

    I say with every doctor you take a gamble, but even though some may not help you physically, each doctor brings their own views and a piece of a puzzle and then you may start to see a pattern.

    Smile.
     
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  14. NK17

    NK17 Senior Member

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    EMilo as you say it's very hard to tell another patient which ME/CFS doctor to see.

    Since Montoya is now out of the picture for us, if we look at your two choices right now it comes down to two doctors, none of which will be covered by your insurance (due to expiration).

    They're both excellent caring doctors, one younger, but surely not without experience and one older, but experience is somehow a relative thing when you practice in a neglected field of medicine such as ME/CFS (neglected by other researchers, doctors, pharma companies and the government).

    Dr. Kogelnik's approach is certainly more leaned on the A/V for the herpes viruses (Famvir, Valcyte, maybe Valtrex) and biologics (Rituxan), he's also well placed as far as potential and different clinical trials are concerned (he works tirelessly for this).
    Right now he is on the East Coast working on one and this involvement in research surely steals him away from the clinic and that's why he now has a colleague (Dr. David Kaufman) working with him at OMI.

    Dr. Chia didn't have much to offer me when I saw him. In my case I was many months into my first A/V treatment with Dr. Kogelnik. He suggested Equilibrant, because of my high viral loads of several enteroviruses and medical history (I remember he got me tested for those and the lymphocytes subset panel, via Quest diagnostic and Arup, before our visit). He suggested a gastroscopy, which I ended up having at my then gastroenterologist clinic. I still have to decide if I want to spend $250 to get the tissue biopsied by his lab and confirm the presence of enteroviral RNA in my stomach's tissue. Eventually I'll do it, but since there is no approved A/V treatment for those buggers (none in the pipeline, except maybe a new super expensive and off label antiviral for Hepatitis C virus) I'm not in a hurry.

    Equilibrant seems to work, by anecdotal evidence, in some patients. Dr. Chia will surely warn you about it's possible side effects such as overstimulation of your already dysfunctional immune system and making you fall into a full blown autoimmune mode. That's why he suggests to start very low and slow and titrate your way up with it. Also his male patients seem to do better on it, if I remember well.

    I've not tried it yet, I have a box, but I'm still not sure what to do. I know other here on PR take it while on other A/Virals (SOC probably can confirm this).

    Since I have not seen Dr. Chia in almost 2 years now I don't know if he's involved in any research.

    Dr. Kogelnik is well positioned in Silicon Valley where there's money, tech companies looking and working in bio-informatics (he has a PhD in it), pharma companies (Roche-Genentech has quarters in SF).
    Most important of all he is working with Prof. Ron W Davis of Stanford (genetics, genomics, theragnostics are promising fields of research), with Prof. Montoya and he his in strict contact with Jay Levy at UCSF, Dr. Dan Peterson (historical memory of the Lake Tahoe outbreak) and Prof. Fluge and Dr. Mella, to name a few.

    In the end you'll have to trust your instinct, make a financial investment (hopefully with a return ;) and make an educated guess based on your symptoms and all the labs you have already done.

    Ideally we wouldn't have to make all these tough choices, especially while so weak and ill.

    Hopefully soon we'll have sorted subgroups and with this we'll have access to drugs such as Ampligen, Cidofovit, anti-retrovirals, Rituxan etc etc etc

    Let us know what you decide to do, in the meantime try to take good care of yourself :hug:

    NK17
     
    Last edited: Jul 13, 2014
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  15. EMilo

    EMilo Elizabethmilo.com

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    @NK17 and @BFG , you are very kind to take the time to give me your thoughts. Such thorough and helpful answers! In the last week, I have finally booked flights, booked an AirBnB rental and had my blood drawn for Dr. Chia. It was incredibly complicated because we had to find 3 different people to watch my dogs, my mother is flying from Ireland to Seattle and then coming with me to LA, my husband is coming for a few days to drive, shop and cook then returning home and my plane ticket was paid by friend's miles (how wonderful is everyone rallying to help?!). PLUS, get this, she donated enough miles so that I could have two seats to curl up in, spoon like (I'm very small, so it's doable).

    But, here's what keeps me up at night and it's exactly what the two of you said: I believe that Dr. Chia will tell me to pace myself. I believe that he will perhaps offer antivirals, but probably not because my titers are not high enough. I believe he will suggest a gut biopsy, which I'll probably decline for the same reasons you mention, @NK17. And I believe he will suggest Equilibrant, which I can get without him and which I may be too nervous to take based on my 3 autoimmune conditions (autoimmune urticaria and angioedema, Grave's Disease, vitiligo). I believe that I will do this huge, involved, expensive trip and I'll wind up seeing him once because that's been my M.O. with doctors.

    This is a huge concern to me. Everyone here and all my family and the blogs I read all say, See an ME expert! And I'm physically willing to risk it now, which I couldn't have done last winter. BUT... I think I know the outcome and patient accounts like yours, @BFG, seem to confirm my feelings about what will happen.

    So, I worry. I still have time to back out. I can cancel the rental and plane tickets. I'll lose a little money. I made the decision and I'm STILL crippled with indecision. This is fun.
     
    Sushi likes this.
  16. EMilo

    EMilo Elizabethmilo.com

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    @Gingergrrl43, I think I'd have to cancel my rental by July 24th for a refund. I would LOVE to hear how your appointment goes. Thank you and good luck!
     
  17. SOC

    SOC Senior Member

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    @EMilo,
    It sounds like you're fighting some anxiety, which is not surprising. :) You are second-guessing yourself, and assuming likely failures before you actually find out what's going to happen. Things might work out entirely differently than you are expecting. It will probably help if you try to relax and not over-think this decision. Seeing an ME specialist is generally a good idea. You've made that decision and the associated arrangements. Try to let go of the worrying and go through with this with a clear and open mind. Wait to see what the doctor says and what your lab results are. Take good notes, and decide what to do about treatments after you have all the information, have had time to recover, and can discuss it all with your loved ones. There really is no need to try to figure it all out before you have all the info.
     
  18. EMilo

    EMilo Elizabethmilo.com

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    @SOC, that is very good, sage advice! I'm a hideous over-thinker. That's what I do. My full-time job for three years has been researching this disease and my body. I know we all do that, but I have been jealous of the people with ME who can seem to relax into their situations and have acceptance without this obsessive need to research answers and read EVERYTHING. You comment quieted my mind. It helped, thank you for taking the time. :)
     
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  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @EMilo

    It helps me to realize that no one step, appointment, protocol, is going to cure me, but there is a very good chance that some of these steps will lead to better functioning, feeling better--the good stuff. For me, it takes the pressure off. Even with great testing and experience, no doctor can totally predict how a patient is going to respond, so it is always "win some, lose some" but it can be a general trend towards "better." :)

    Sushi
     
  20. EMilo

    EMilo Elizabethmilo.com

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    @Sushi , that is the next thing I have to learn. For 28 months, I went straight downhill. I thought it would continue that way until I was completely bedbound. So, I have a hard time thinking that there will ever be a general trend towards better, although that has slowly been the case this year. If I could have faith in getting better, rather than fear of getting worse, this brain would be easier to live with. ;)
     
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