• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

seeing Dr. Kaufman? don't wait too long to reserve hotel room

Mary

Moderator Resource
Messages
17,293
Location
Southern California
Well, I'll be seeing Dr. Kaufman on 9/1. I made the appt a couple of months ago, but didn't make up my mind to definitely go until a few weeks ago. I had considered seeing Dr. DeMeirleir, but they never responded to my e-mail I sent some 4 weeks ago. I understand that it can take a lot of time to contact him and realize I just don't want to deal with that.

OMI is about 340 miles from where I live, so I'll be doing the trip in 2 days, hoping I won't be crashed while I'm there.

In any event, this week-end I finally got around to reserving a room in Los Banos (my way station) and Palo Alto and was startled to see that the place I wanted to stay in Los Banos (cheap but not too cheap, with good reviews) only had 3 rooms left for the Monday night I'll be there, and the place in Palo Alto, which I got from a list OMI provided, only had 3 rooms left also for Tuesday night, and none were the "cheapest" rooms ($129 a night), so I got one at $143 (with AAA discount). The next available room was over $160. And this place was one of the least expensive on the list OMI provided, but it also looks very nice: http://paloaltocountryinn.com/?gclid=CO_y9LjmsMcCFQyoaQodKTsPMw

I've never run into this, booking a motel room on a Monday and Tuesday night, not a holiday week-end, 2 weeks in advance, and having rooms getting scarce.

So if I had booked earlier, I could have saved some money, though not a lot, but the scary part is if I had waited another week to make a reservation, I could have easily been looking at over $200 to stay one night in the Mountain View area. Dr. Kaufman has raised his rates, $525 for initial appt now - everything adds up, as you all know.
 

Mary

Moderator Resource
Messages
17,293
Location
Southern California
I will post how it goes. I don't think there's a lot he will be able to do, but you never know - and it will of course be very useful to get all the testing one --
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Is it still school holidays over in the US? Hotels are pretty full in the UK (and much more expensive) during the hols. Prices come down after the first week of Sept. This year when looking I was astounded by the cost of decent hotels in the US, The last time we went (many years ago) we got some super 5* deals by just calling in on the day, the way you can't when you're sick....
 

Mary

Moderator Resource
Messages
17,293
Location
Southern California
Is it still school holidays over in the US? Hotels are pretty full in the UK (and much more expensive) during the hols. Prices come down after the first week of Sept. This year when looking I was astounded by the cost of decent hotels in the US, The last time we went (many years ago) we got some super 5* deals by just calling in on the day, the way you can't when you're sick....

I think most of the kids have started back to school. It seems to get earlier each year. When I'm going is one week before Labor Day (a major holiday here), so it's not part of a holiday week-end, which also jacks up the price. Yeah, it's pricey! and being sick, and traveling so far, no it would not be a good idea to call on the day I arrive :eek:
 

Gingergrrl

Senior Member
Messages
16,171
You can stay in Sunnyvale or other surrounding cities and much cheaper if you book in advance as stated. It is also holiday/vacation season so less availability but we have always found a hotel in that area for OMI (even on the same day) so it can be done. Best wishes!
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
Hi, I am actually in mountain view right now for my appt at the OMI and yes the hotels are pricy and stay pretty full even on the weekdays.

Since I can't drive anymore and have to take taxis which are themselves pricy I opted to stay closer to the drs office. I am staying at the Crestview hotel which isn't the cheapest (nor the most expensive) but there is a coffee maker/mini fridge/microwave in the room which have stopped being standard amenities, and an unexpected added bonus it has a great big Jacuzzi tub! They gave me a really close room on the 1st floor when I told them I couldn't walk far. OTOH the bed is hardish and there is no channel guide (sure miss my direcTV!)

Took about 10 minutes or less to get to the omi. There are other hotels closer but they were full (or more expensive) when I was booking my stay probably 2 1/2 or 3 weeks ago.
 

Mary

Moderator Resource
Messages
17,293
Location
Southern California
I can't drive anymore and I take uber. 15 minutes to OMI, from Sunnyvale, costs $14.00. They will be there in 5-10 minutes. Don't think I've ever waited even that long. A lot of Uber drivers in that area.

Do you have to have a smartphone - an app - to use Uber?

Whoops - I just answered my own questions - basically you do need a smartphone. They are working on a texting solution for people who don't have smartphones, but I don't think it's up and running yet.
 
Last edited:

L'engle

moogle
Messages
3,173
Location
Canada
Anyone know if there are any b+bs(bed and breakfast) in the area that aren't too pricy? The clinic is near a hospital so it seems like there would various accommodation around for family members of people staying in the hospital.
 
Last edited:

JAH

Senior Member
Messages
497
Location
Northern California
Do you have to have a smartphone - an app - to use Uber?

Whoops - I just answered my own questions - basically you do need a smartphone. They are working on a texting solution for people who don't have smartphones, but I don't think it's up and running yet.
You can also use an iPad, or I assume an android tablet. But yes, it does need an app.
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
@Firefly_ - Do let us know how it goes - (the Jacuzzi sounds wonderful! :))

Hey, sorry it took me so long to reply but this trip really took it out of me. After my appt I came up to the Sacramento area to visit my family and I really can't wait to get home. Love them all but there's no bed like my own! Miss my honey too :(

The visit was great, pending test results Dr Kaufman said there was a fair chance he could fix me since I haven't been sick that long so I am hopeful. Couldn't take the SIBO test because I was currently on Cipro so have to wait a few weeks to do that. He did tell me to raise my LDN to 4.5 mg and we may go higher yet. Also recommended something called Aberogast for my constipation (got it from Amazon) and let me tell you, this stuff is great! Tastes terrible but just suck it down and get it over with. He also touched on methylation and MTHR whatever stuff lol but we will get deeper into that at the next appt. I have tried to figure that stuff out on this site, but its really beyond me so...

There was other stuff but I would have to listen to my recorder that I forgot to whip out till half way through the visit lmao. Really won't know much else treatment wise till my appt in Sept. He is, as other people have stated, very nice, compassionate, and not in the least bit condescending. Kept asking me if I had any questions but I kept having to say no lol cause I'll be damned if I didn't leave my notebook (along with whats left of my brain) at home in Oklahoma. Ill get the questions out in my follow up. I am very happy that I went, it was very nice to have a Dr that has a clue and doesn't look at you like you're half ass crazy!!
 

Mary

Moderator Resource
Messages
17,293
Location
Southern California
@Firefly_ - thanks so much for the update! I'll be seeing him a week from tomorrow. Wow - you came from Oklahoma - I'm only in So Cal.

So you're on ldn - that's on my list of things to try, but have not tried it yet. Well actually I did about 5 years ago, it didn't go well (it made me spacey, difficulty concentrating - watched my roof leak for 3 days before it occurred to me that I should do something about it besides setting out pans! :confused: (this was the last major rain we had in Calif. that I recall)) but I want to try it again, my body is working better in some ways now than then.

What a great idea to bring a recorder - I think I will try to get my hands on one.

Does he do the SIBO test in his office? That's something I think I'm having trouble with.

Thanks again for your update, glad it went so well!