posted
The good news is were going to Maui. The bad news is it's in 5 days - and I've just started babs treatment.
It's our first big family trip and we've been planning/saving since February. Me, Hubby, and three boys age 10 and under.
I was just diagnosed with Lyme Disease - was clueless about the disease until two weeks ago. Been zith & mepron, for a little over a week.(plus supplements, probiotics, etc.) Ordered some burbur. Terrible herxing, pain, weakness - but I can get around, walk with limp, read, eat, etc.
Also, on a strict blood type A hyperglycemic (spelling?)diet. No sugar, corn, potatoe, wheat, etc.
I'm thinking about cheating once or twice at dinner on diet.
Any tips appreciated. I want to have a good time - this is our dream vacation. I won't let some little microscopic parasite and bacteria take away my fun.
Thanks, Marcelle Posts: 38 | From Lincoln, CA | Registered: Nov 2007
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bettyg
Unregistered
posted
marcelle, your dream vacation.
i'm gluten intolerant too; i would suggest not indulging in foods you shouldn't or you will be paying for it in the bathroom and those 3 kids are going to want to be in there with you! lol
there were posts about flying, etc. and especially one wonderful one from airline stewardess who worked on one! i thought i had copied it to my newbie links, but nothing popped up when i looked there.
LOOK IN TREEPATROL'S NEWBIE LINKS! i'm sure he copied lonk as it had many wonderful, RESOURCEFUL comments! it's a must to read, so take the time and look thru treepatrol's links at the top of MEDICAL. people's replies are AFTER ALL OF HIS LINKS !
1 tip i really remember was do NOT TOUCH ANYTHING IN RESTROOMS....CARRIERS OF EVERY GERM IMAGINABLE!
someone mentioned bring disposable gloves!!
also for behind your head; i'd bring my own CLEAN covering! good luck; HAVE FUN! we'll look forward to reading your comments when you get back!
posted
Thanks for the suggestions. How would I look into the link you suggested? I'll try doing a search for the name. Good ideas about germ protection - hadn't even thought about that.
Just went grocery shopping with my 5 year old. Limped my way down the aisles. Now I'm ready to collapse.
Marcelle
Posts: 38 | From Lincoln, CA | Registered: Nov 2007
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bettyg
Unregistered
posted
below is TREEPATROL'S NEWBIE LINKS ARCHIVE!
! click on link, begin on page 1 and look thru his links! most are specific topics noted. when you get into replies, STOP
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Marcelle,
I'm not sure that I can give you much help on this topic, but I too took a trip to Hawaii after I had been on barbs treatment for a couple of months the end of this last summer.
I really debated hard about doing it since I was really sick, but at the same time, in my crazy way, I figured I could be just as sick somewhere else as I can here, home in bed, and since some days are worse than others, I figured I'd just enjoy the good and rest through the bad.
One thing that was no big deal, but something that totally slipped my mind is that since I had so many meds with me, I put them all in a container and forgot I had the mepron in there too. I did take out my baggie of liquids (3 oz or less) to go through the scan but was obviously stopped due to my larger quantity of a liquid that wasn't in the baggie.
They were fine when they saw it was a medication, but if you want to save yourself the delay of waiting for them to go through all your stuff, looking for the extra liquid, put the mepron out with the other liquids.
For me personally, I had neurological issues when we had our lay over in San Francisco and couldn't walk right. Still to this day, I don't know why that happened, since it settled down in a few hours and never happened on any other legs of the flight to or from Hawaii.
As far as the diet....I actually found that I was able to follow it pretty darn closely even when in Hawaii. I ate lots of meats and vegetables and would leave the other items, ie potatoes or whatever.
If I had a salad, I would ask for the oil and vinegar and just use the oil. Not as tasty, BUT I didn't have to worry about what may be in the dressing that would be a no no.
I did cheat ever so slightly with some fruit, since they had some great pineapple plantations and I had to try, but I didn't over indulge or anything.
I never ordered any desserts anywhere and actually found that I had quite a few pretty good days. I wasn't as "active" as the rest of the family and didn't do long hikes since I didn't have the strength or stamina but the sights were beautiful and you can see a lot of them by car.
I guess my best recommendations would be to make sure you get plenty of sleep, stay on the diet as closely as you can since I honestly think it helped me enjoy this trip more since I wasn't getting knocked down with yeast or whatever, and just have a great time.
You may still have some rough moments. I know I did, BUT there were so many great memories that came out of it, I'm glad I went, even though I wasn't as well as I wish I could have been.
But waiting around to be "all better" in such a long process was too overwhelming and you NEED something in your life to look forward to. This sounds like just the right ticket you need.
Oh yes, my LLMD told me to take Airborne for the plane ride. I don't know if it helped or not, but I didn't get sick, soooo...best to hedge your bets.
Good luck and have a WONDERFUL time.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Nice to hear from someone who has been there while on treatment.
I'm seeing my doctor tomorrow, and going to ask if I can take it easy on meds. I had heart palpitations on and off for five hours yesterday - so I'm most likely going to try another medication, other than Mepron.
Thanks again. I started packing today and am starting to get excited - before today the Chronic Lyme diagnosis was clouding my anticipation.
Marcelle Posts: 38 | From Lincoln, CA | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Seriously, can you put off the treatment or start slow and easy ? Ask your doctor what he would do ?
I tried the blood type diet (I'm also an "A"), but found I really needed meat and fish. I gave the vegetarian route many years, but feel much better with animal protein. So, the "Eat Right for Your Blood Type Diet" may be good for some, it is not as individualized as some need it. Listen to yourself on what you need to eat. What makes you feel better ?
You can call the hotel - or the mgr of a condo if you are renting.
BETTER YET - CAN A FRIEND DO SOME OF THIS RESEARCH ?
Find out about health food stores near where you will be. Contact them - or check their web site - for items you know you can use. Reserve or order what you will need so they have a goodie bag for you.
Same with the "restaurants" at the airport for your food on the way over. I think you can only take on what is after security. If you call your airport, they may be able to connect you with the manager of a restaurant.
You can also contact the restaurant managers in the places you will be eating. In advance, is best. they can make anything taste great and with the added care for your "allergies"
I would not use the words "sensitive to" or "not supposed to eat this" . . .
and ( I know this from experience) you MUST stick with it if you begin by telling the waiter "no croutons in salad as I'm gluten-free" then you better not cave in and order the bread pudding for dessert. They will not take you seriously from then on and all bets are off if you return.
You can often many restaurant's menus on-line. If so, look over the whole thing before going so some favorite from childhood won't take you by surprise - that's when the cave-in comes from out of the blue - or the disbelief in all this.
I once had a waiter who, after I told "no croutons" came back and told me that the hazelnut crust for the salmon usually had wheat in it, but they managed to find some nuts and make mine special. It never occured to me. He was one who really knew.
The word"cheating" is a rough one. This is not a calorie trading diet where you can balance it out later. Gluten - or whatever offending agents - can affect you for days. You want to feel your best, if you can. On the other hand, fruit can be really good - so be sure to take probiotics (or get them there).
Being sure to eat protein and slow-carbs and good fats may allow you a nice dessert w/in reason. But high sugar dessert all by itself can do havoc with anyone's glucose stability. I think somehow we came to believe (from commercials) that a body should be able to eat all sorts of stuff. So, ask your inner cave-woman what is good for you.
It may take more planning, but I do think that you can have gourmet - and "normalish" snack - foods all the way. You deserve it. It can be a healthy way of eating - not a diet.
Best of luck. Some celiac web sites may also have great travel clues, even connections. Maybe someone living over there can be your "supplier" - Hope it works out to be a fabulous vacation with great memories.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You might really like to have a wheelchair reserved for each leg of your flight.
You have to call the airline in advance, and order that.
Call the day before to confirm. When you arrive inside the airport building, go to a courtesy phone - or the ticket/baggage check in if you can.
If you call on the courtesy phone, someone will come with a wheelchair and then you get to go to the front of the line for all stops then - checking in, baggage and security.
At security, I set off the alarm, had a seizure from that, grabed the sides of the pass-through, nearly pulled it down . . . nearly got shot by the cops - so if you startle easily, ask to have personal screening.
Then be prepared to have to hold your arms out for a while. I could not and nearly got shot again when I put them down. So, I hope you got a chuckle out of this - advance planning and be sure they know what you need. I was alone, so no one could tell them about me. You'll have your husband, so that'll be good.
now, then, the wheelchair can make a stop at the restroom for you, or to pick up food . . . but will leave you at the gate unless you need it to board. Sometimes I have, sometimes, not.
you need to let the flight attendants know as soon as you board to radio ahead to be sure there will be a wheelchair waiting for you as you land. With each flight you have to do this, even if it's all reserved.
Now - in some airports, they don't have wheelchairs, but golf carts, some large enough for the whole family. Fun . . . but these guys drive like they are in the Indy 500. So, hang onto your bonnet. they also beep or buzz so be aware of that.
I hope I've not worn you out - I've not flown in 3 years, but I think it's still much the same.
Using the wheelchair - EVEN IF YOU THINK YOU CAN WALK - is great for reserves. You can still get up and walk some of the way, but don't send it away until you near your gate.
I have also actually just put a coat or scarf on the floor (in a corner) to lie down. I tried to pretend it was for my back, but whatever it takes, do it.
Best of luck, again, and maybe a friend can call your airline and do this - and find out the type of transport at the airports you will be in.
Ginger for the flight helps alot if your tummy needs calming - but too much might be stimulating.
TABACUM homeopathic works like a charm for that - in addition to the airborne mentioned above. that's a great product.
sorry this is a jumble - just off the top of my head. hope it can help you have a smooth flight.
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