Anyone been to China?

[marta]

Hey gang,

I've just gotten this amazing opportunity to go to China and just found out I have to get vaccinated for Typhoid and Hep A. I can't do a live vaccine obviously. But for those of you who know me, know that I got Wegener's because of the H1N1 vaccine, and then my one and only flare because of a flu shot (as advised by the docs) which happened to have the H1N1 vaccine in it, so I have a huge apprehension with vaccines. I'm just wondering if any of you have any words of wisdom on this as this is one seriously worldly bunch.

Thanks for sharing and helping.

marta

[drz]

Do you have access to a "disease doctor" that specializes in prevention of disease while traveling to other parts of world where there is an increased risk of certain diseases? I used one before trips to areas where i was more at risk. They also know what vaccinations are required or suggested for travel in certain areas. Maybe they could advise you and help you meet any legal requirements for travel to areas you are planning. I know I found them very helpful before any trips where there was some increased risk of disease or required vaccinations.

[pberggren1]

Some of my friends were just over in China and I'm pretty sure they didn't have to get any vaccines b4 they left. I'd look into this further Marta.

[Psyborg]

I'd say you should check with a doctor, but of course they'll say to get the vaccination. I think I'd be reluctant to go to a country with vaccinations suggested without said vaccines on board though. The last thing you need is to get Typhoid or Hepatitis.

Just to let you know as former military...that Typhoid shot is a painful one. Well not the shot itself, but the way your body reacts to it. Make sure if you get it you excercise the arm heavily...that's the best help...they had us doing pushups when I got it.

[marta]

Thanks guys.

drz, I don't have a doctor that specializes in travel but I went to the Health Clinic, under the advise of my rheumy, and you just tell them where you're going, how long you're staying and they have a computer program that tells them what you have to vaccinate if anything. They have a live option of a neutralized option for the two that I have to have. I've sent the info to Dr. Rheumy to see if she has any concerns - awaiting reply.

Bob, thanks for the tip, it might force me to do the first push ups in a long long long long time. I see that it's intramuscular, so yes good tip - gracias amigo. I'm a geek, I have the vaccine insert with me.

Thanks again, I'll send you pictures from China... weeeeeeeee.

[pberggren1]

Is it crucial that you have to go to China?

[Sangye]

A friend of mine is traveling to India and Nepal soon and just yesterday asked me for advice about vaccines for tetanus, typhoid and hep A.

My advice? Get the tetanus if you're going to a remote area, since it might be hard to track it down if you need it.

Typhoid
I had a severe reaction to that shot when I got it for the Peace Corps. My neck and shoulders went into tetany, which is the maximum a muscle can tighten. I was told it was a "common" reaction. It was excruciating. The typhoid oral vaccine is live, the shot is killed. If you do get typhoid, it can be treated with antibiotics. The typhoid vaccine is 50-80% effective in preventing typhoid. (Remember that all vaccines are much less effective in an immune-compromised person)

Hepatitis A
The shot comes in 2 forms: live or killed. Supposedly 95% effective in preventing infection.

Both typhoid and hep A are transmitted through poor sanitation. I think if you're not able to avoid questionable food/water, then you are going to be in significant danger of contracting other diseases, too. But if you're able to control those things you can have a fun and healthy trip.

[marta]

Thanks Sangye,

As always brilliant. I'm going to be in shi shi hotels because we're going on a 'trade mission' with a pretty big party so I think we wont be 'roughing' it, so I'll avoid the tetanus. I would avoid all if it was up to me, but I think I have to be safe. Getting either Tetanus or Hep A would not fare well in my already depleted body. I plan on having a fun and very healthy trip. That's the plan anyway.

I wonder if you and Bob got zinged with the older version of the Typhoid vaccine - the whole cell one. Apparently they've stopped using it in the more developed countries but not in countries that don't have access to the new one. The reason they stopped using the 'whole cell' typhoid vaccine is because of too many reports of negative side effects in or around the injections site. I'll let you know once I get it this week. I sent the info to my super doc and she hasn't responded yet (I told her to respond only if she sees any red flags - ha ha, get it?)

On a completely different note, and I know I should probably start a new thread on this because I think it's such a huge deal, but I'll economize on threads, since my new mission in life is to find the common thread to all autoimmune disease and thus we can all be healthy one day, but here's something that might lead to something. It makes so much sense to me this article it gave me goosebumps when I read it, just like the article on the 'common thread' (it gave me goosebumps too because I saw how that is the answer to us Weggies finding a cure within our lifetime). Here's some food for thought: The human microbiome: Me, myself, us | The Economist (http://www.economist.com/node/21560523) , and if you're curious about the 'common thread' article I mentioned here is that: :: American Autoimmune Related Diseases Association, Inc :: (http://www.aarda.org/common_thread.php)

Thanks again beautiful people (that's what my momma calls my family and that's how I feel about you.)

m

[me2]

I'm thinking you are going to have a great time Marta. I've been to China twice in the last few years. I was told no vaccinations are necessary. Hep A was recommended. I got one shot of the Hep A and had a weird reaction to it so I didn't get the second shot.
Wegs flared up while I was in western China and attacked my cerebellum . I came back in wheel chair. This will not happen to you.
I like Sangye's suggestion about the tetanus although it does sound like you won't need it.

I don't know if you have sinus problems. If you do then you need to take special care for this trip. The plane ride is very long and the air in airplanes is extremely dry. I didn't know this and didn't even realize it during the trip until I got to Hong Kong and spent the next day in bed in agony. I mean agony. My sinuses had dried out and become extremely painful.
It wiped me out.
Ironically I had the cure with me the whole time and didn't know enough to use it. On the return trip I pumped my sinuses full of saline gel. A sinus spritzer would also work. Anything to keep them moist.
I also used this trick on my next trip and had zero problem.
Can't wait to hear stories from your trip. China is a very interesting place.

[carriej22]

Kind of hijacking here, but marta you said that H1N1 vaccine caused your wegeners?

Can you explain this to me?

[Debbie C]

Marta..Yea for you.I hope you have a fantastic trip and that you stay healthy. Look at the list, I think it was Nicole from Austraia, packed on her trip to the US maybe you'll get some ideas you wouldn't have thought about !!! HAVE FUN

[jola57]

I'm with Sangye, Tetanus is a must going into any Asian country or south of the border. Even staying in lux hotels you will still be out with common folk when sightseeing. Hep A, is a question but it's very easy to get the illness so I would get it, it has a very high protection factor. Typhoid, I would look ino what are the statistics for the area you are visiting and then make an informed decissionnn

[marta]

Thanks Everyone. Me2, that's an awesome tip about the nasal gel. I usually put in polysporin in my nose when I travel on planes. It creates a barrier for the airplane germs to get stuck in. I wore a mask on an airplane trip early on, when I was still very afraid of germs and not too familiar with what level of immunosuppression I was at. My rheumy told me that those masks don't really do very much to protect you from free floating germs.

Back to the topic at hand. I have decided against getting a vaccine. I spoke with a local GP here the other day and he was of the opinion that if it was the vaccine that triggered my disease in the first place and also triggered the only flare I have had, there is a possibility that getting this vaccine might trigger a flare. I had this fear in the back of my mind and was working very hard at suppressing it. Once I heard that though, I went and spoke with the nurses at the clinic and they told me that it's not manditory (the only that's mandatory is Yellow Fever for some countries but not China). So in the spirit of Wegener's where every decision after diagnosis seems to be choosing the lesser of two evils, I made a decision to not get the vaccine because I've worked for two and a half years to get to where I am today and am not in the least bit interested in having a self induced flare and starting from scratch this stupid game. I know I will flare at some point in my life again, perhaps even several times but I'll be damned if I am knowingly the cause of a flare.

As for the threat of Hep A and Typhoid, I'm going to go packing Cypro (antibiotic used to treat traveller's diarrhea and Typhoid as well) and Tamiflu (antiviral to treat early symptoms of Hep A). So I'm going in packing some heat, so to speak, in case of emergency. My doc (super rheumy) supports my decision but warned me that an infection caused flare is very troublesome. I'll be super careful. We're staying in nice places. I grew up in a Communist country so I have some intrinsic know how on surviving the system (although in Bulgaria I had the benefit of knowing the language.) Incidentally I looked up Bulgaria and the vaccine 'requirements' are similar but I spent a chunk of my life there and never had any issues, so I'm taking the risk.

Carrei, it was Sangye actually that helped me come to that conclusion (not intentionally, I'm not sure if she'd like credit for that one.) I had the H1N1 vaccine late 2009 along with everyone else - against my better judgement and my gut telling me not to. I was guilted into it for my daughter who was 3 years old at the time. I went and got her inoculated and of course myself because what kind of momma would I be if I did it to her against my feelings and not get it myself. She's fine. I'm a Weggie. It took about two and a half months for the symptoms to appear and then five months to diagnose. I didn't make the connection at the time. After dx I was told to get the seasonal flu shot to keep safe due to the immune suppression. I went that fall (five months after diagnosis) to get the flu shot and they had the H1N1 included in it. Within two days I started getting symptoms, and two weeks later I was in the hospital with a full blown flare on 1000mg of solumedrol for 3 days and back at 60mg of pred and weaning that crap since Nov 2010 - I'm at 3mg now). My liver enzymes were elevated just before both acute attacks, and I speculated on this forum that something with my liver might be involved with setting off a flare. Sangye suggested that something in my environment might be setting off my liver and that's when I made the connection because the only thing that was the same in my life between those two dates is getting the H1N1 vaccine. My life had changed so dramatically that this was the only commonality. I then did some research and believe that in countries that used squalene as the adjuvant in those first mass inoculations there is a significant jump in autoimmune disease. My second shot didn't have squalene, however at this point I believe my body was primed and that's what set me off. This is my opinion but I do have some solid research that supports this view.

I had this in my mind and it made me a little angry and let down by the powers that are supposed to be watching out for my welfare, but I have decided to not focus on the negative emotions and switch it around for myself and focus on the positive. That's why I've grabbed trying to find a cure for all autoimmune disease by the horns. I want to channel my energy towards a positive goal. This is my coping strategy and it really makes me feel good and puts the yucky stuff that's associated with Wegs on the back burner of my mind. I've gotten so into this vortex that I truly believe with all my heart that if we pool our resources, Weggies, Arthritis sufferers, MS patients, Cilliacers, Chronesers, and over a 100 more, we can be strong enough to get science to look for our commonality and thus lead us straight towards a cure. I believe we can see a cure in our lifetimes... not our great grand kid's lifetimes. So get your PJ's ready and get your circles of friends to do something they're normally doing but in PJ's on March 1st. If we all do it, people will notice. Our entire town put on PJ's last year. It was absolutely unreal. We felt like a group of people banding together for a common cause that would not only save millions of lives, but free up our health care system to take care of other sick people. 20% of Americans have autoimmune disease. Then there's their families and friends - it affects so many of us. Can you imagine if we all stood up for it on one day of the year, how many people that would be....

I'm so passionate about this - can you tell? I feel it in my gut that we can make a huge difference together. HUGE! And we spread the word by just getting our buddies and family involved, and just by doing that our reach is global. Our voices will be heard.

There, I've hijacked this thread on myself.

Here's what we did last year, I'm sure I've shown you this before, but in case you want to see how much fun it was (scroll down below the videos to see the newspaper write up after the event, and the pictures of life in our town in PJ's, the pictures are great)
The video, pics and write-up of PJ Day and the Evening Fashion/Dance Show « Find The Common Thread (http://findthecommonthread.com/2012/03/12/the-video-of-the-evening-fashiondance-show/)

I'm going to have fun in China and will take pictures and post them on here upon my return.

Love you guys.
marta

....think PJ's:wink1:

[mishb]

Have an awesome time Marta and we look forward to all the goss, on your return :biggrin1:
...... a positive outlook (I will not be sick on my travels) works wonders.


Can I just say that I used the mask on the plane to and from America and others in my party/family came down with the flu and I did not get anything.
My suggestion is that you still use the mask.......even if it helps a little, it is better than the alternative.

[jola57]

Have a terrific time in China. Don't worry about flares, I visited Poland, UK, US, Hawaii and Carribean since my diagnosis and have not had any flares as a result. You are taking necessary precaution with meds and you and me both came from all most a third world so our bodies already have enough antibodies to many of the bacteria. One warning, you migh get tummy upset just because of the different foods, it's not like our Chinese takeouts, so go prepared with Imodium and like. Be careful, and take home made sandwitches with you to snack on. Oh the wanders you'll see, there is such wonderful history there. Enjoy!!!

[vdub]

My endo has put many places totally off limits for me. All of the orient, except Japan and Singapore, Mexico, all of Africa, and Central/South America are all off limits. Europe, Australia, and New Zealand are all fine, though. I good probably get by with some specific places such as Johannesburg or Teipa, but I don't have much interest in going there anyway.

However, I have a very different situation than most of you.

I have already traveled and lived in most parts of the world. I do regret not being able to go to Russia, but I'll get over it.

Have a wonderful time in China, Marta!

[marta]

I'm back and a much better person from the experience. I met so many wonderful people, had so many wonderful adventures and saw so many incredible (beyond words) things. While we were in Beijing and Shanghai, they had the highest smog/air pollution in history - it was well over 700 when the measurement system only goes up to 500.... but guess what.... apparently heavy smog is good for the Weggie sinuses, because my sinuses are the clearest they have been since last September. All the crazy flu business going on in North America is completely non existent in China. Didn't see anyone with a cold or flu. They wear masks to protect other people when they're sick so despite the dense population there is no sniffles to be seen. I felt so well while there. I had the unfortunate luck of sitting behind a dude who was hacking up a lung on our flight back to Vancouver from Shanghai, and he wasn't a true Asian because not only was he not wearing a mask but was unaware of the concept of covering his mouth when he coughed and he coughed every 30 seconds for the entire 11 hour flight. Not cool. If I get sick, it's his fault.

China is an amazing place and I have a great series of photos of Marmot Moose (a stuffy toy Hana got for Christmas that I took with me on the trip) in China and once I put them all together I'll show you guys. I have a few pictures on Facebook for those that are buddies on there, but they're just a small sampling of the entire adventure.

Just wanted to let you all know I'm home safe and sound and pulled it off without the wretched vaccines.

Big hugs to you all.

[drz]

Thanks for the update. Glad to her you had a nice trip!

[Sangye]

Yay! I'm glad you had a great time AND stayed healthy! :thumbsup:

It's interesting that you felt so well there. What was your diet like? That's the first thing I'd suspect as the cause.

[marta]

Thanks drz and Sangye,

I was actually blown away at how well I felt. I hate to talk about what I'm about to talk about but we're all family on here so here goes. You know how the "movement" schedule tends to buckle up when you go traveling? Well on this trip, I was as smooth as a Swiss watch, if you get my drift. Nothing changed, in fact it improved. I felt great. We ate traditional Chinese food most of the time, but I have to say that when we were in Northern China - Harbin, I wasn't too fond of the overall flavour of the food. Once we went further south the food taste improved dramatically for me. I was telling Brian that maybe I was Chinese in a previous life because I really enjoyed the experience, both physically and emotionally. I loved the people. Truly beautiful people. The music brought tears to my eyes a few times (it's embarrassing how little self control I have when it comes to that). So who knows. If you believe in that kind of stuff, I think I have treaded some of those paths before. I would go back there in an instant, although we were very well taken care of, and I was so cautious. No ice, ever, only bottled water or wine (I drank more wine on this trip than in my whole life combined, but only for safety sake :tongue1:)

Good to be home and with my little girl. That was the hardest part of the trip, being away from 'creature' for so long.

[pberggren1]

Yes, wine is very safe to drink....lol. Chinese food is probably the healthiest food to eat so that makes sense. I wonder why Marta's nose was good with all the smog. Any ideas?

[drz]

Yes, wine is very safe to drink....lol. Chinese food is probably the healthiest food to eat so that makes sense. I wonder why Marta's nose was good with all the smog. Any ideas?

Maybe the toxic chemicals scrubbed out the Weg damage or plugged up the inflammation areas. Good question for her Wegs doctor as to why she felt better there, isn't it.

[Debbie C]

Marta,Glad u r back and had a great time with no problems.I did see on the evening news one night of the fog they had there,it was horrible. But good to hear all went well ( in all ways !!!)...it was probably all that wine !!

[me2]

Wow Marta, I'm so glad you had such a wonderful trip. I have loved the two times I have been to China and one of those trips was horrific- at least as a Weggie.I suffered brain damage and came back in a wheel chair. And yet even the bad trip was a life changing wonderful event. I figure I would have been sick somewhere, why not someplace I find enchanting?
I want to go back but the pollution is something I worry about . Thank you for sharing your counter-intuitive experience of this.
I made a friend in Beijing and went to a Beijing ''hospital" with him . Talk about an eye opener. It permantally changed the way I look at health care. We are very lucky- even as Weggies.
I love China , and I hope there is more you can share about your experience. Welcome back.

[me2]

[QUOTE=pberggren1;65358]Yes, wine is very safe to drink....lol. Chinese food is probably the healthiest food to eat so that makes sense. I wonder why Marta's nose was good with all the smog. Any ideas?[/
Great question Dr Phil. I know the second time I was in China my sinuses felt very bad the first day and then seemed to adjust. I don't know why. I then spent an entire week all over Beijing and surrounding areas functioning pretty well. It surprised me. I thought that my initial bad response would persist but it didn't. I was not in great shape at the time. I was still a sick Weggie , partially in denial.
In retrospect, I probably shouldn't have even traveled there in my condition- but I had a mission. (There was a hospital I wanted to visit and talk about Weg.)
Then I met some nice people and it turned into a wonderful vacation. I can't really explain it- like Marta says, it goes beyond words.

[marta]

Just thought that I'd put all (most) of my China photos somewhere organized, and now that I've done it, anyone can see it.

So thanks for all your advice and support and here's my little China trip with my daughter's moose taking her place.
Marmot Moose Goes To China | … a trip to build friendships and explore a brand new world (http://marmotinchina.wordpress.com/)
Enjoy!

[drz]

Just thought that I'd put all (most) of my China photos somewhere organized, and now that I've done it, anyone can see it.

So thanks for all your advice and support and here's my little China trip with my daughter's moose taking her place.
Marmot Moose Goes To China | … a trip to build friendships and explore a brand new world (http://marmotinchina.wordpress.com/)
Enjoy!

Great slide show and documentation of your trip. Well down. St. Paul Minnesota used to be the Ice Sculptor capital for the USA in their winter festival but the Chinese ones looked outstanding. Looks like a real amazing first class trip you enjoyed. Glad you shared it.

[mishb]

Just thought that I'd put all (most) of my China photos somewhere organized, and now that I've done it, anyone can see it.

So thanks for all your advice and support and here's my little China trip with my daughter's moose taking her place.
Marmot Moose Goes To China | … a trip to build friendships and explore a brand new world (http://marmotinchina.wordpress.com/)
Enjoy!

I'd be careful of that little moose, Marta, he appears to want to being in every photo........steals your bed, photo bombing shots and not being careful around strangers.

:lol: Hehe - excellent job with putting it all together.

[pberggren1]

Speaking of China, there was just an earthquake there.