Weak immune system in Disney?

[AnnieDan_Artlover]

Hi all,
I have CFS (and EDS type III) and thus, a pretty weak immune system.
It's not the weakest, but... Let's just say I often find myself ill after going out, especially if I was somewhere crowded... especially if a majority of the crowd was under 10 yo...
Sometimes I'm lucky and only get a minor non-inditifiable virus, or only the start of a cold (with a flare-up of symptoms, of course!)... which still means at least a week unther the weather (er, I mean, more than usual! ). But sometimes I get the full-blown virus, full-blown cold, etc... And for a CFS sufferer, it means being in bed for about a month... (and it's not a figure of speech!).

Sooo... It scares me for WDW!!! 'cause let's face it, not only is it VERY crowded... (even though we're going early May), but it's like a huge Kindergarten!!!
I just need one kid that has a virus starting, who didn't wash his hands, who touches the railing I then touch and... I could be out for at least 3 whole days (and feel miserable!)... and ruin my mom's trip too.

Of course, I'll bring my faithful friend... Purell... and use it more often than usual... Like each time I get back to the wheelchair (because it'll mean I've touched something public! ), and each time I feel like it. I'll bring wipes and Lysol sanitizing aerosol to super-clean the room when we arrive (ouch! It also means each room en route!), my wheelchair once a day (in case someone has touched it or it caught something on the way... Which I guess is useless since I'll touch it all day...) And wipe or spray whatever else I could see the need to...
I'll bring my own pillow... just to be sure I don't breathe someone else's virus...

It's a good thing we're driving and can bring as many luggage we want!

I thought about the mask... You know... Either the surgical or the "new flu-mask" (more rigid and round... there are even fashion ones now!). But I used to work in a hospital and had the "chance" to use them... And I also sometimes use them when I visit people at the hospital. And I HATE those. A lot. People look at you like you're dangerous and contagious and never think the mask is for your own protection... And it's ugly. And VERY uncomfortable. But of course if it meant staying healthy in the house of the Mouse... I guess I should consider it.

But I just did some research and read that those masks were working only with secretions, so only one-way : it helped the infected person not to be contagious, by keeping it's possible secretions to oneself. So I guess it could work for me... by keeping me safe from spits!
If a sick kid caughed right at me without putting his hand in front of his mouth, I wouldn't get his sick spit in my mouth/nose and thus would have less chance of getting sick. But... if that same sick kid caughed, even with his hand in front of his mouth and I had that same mask... I could still get sick! Because virus particules are so tiny and volatile they could go through the said mask. How useful!

I also read that the new "flu-mask" is a little more resistant... but up to what point?

So I'm not completely sure on that, I need to do further research and talk with my doctors... It's certain that if it's not working better than that, I'm not using one!

Oh yeah, and I will have a flu vaccine, like each year. But altough it helps not to get the current flu variant... it can do nothing for other flu variants or other virus.

I need your advice, opinions and experiences...
Did some of you went to the World with autoimmune diseases or any form or weak immune systems (like chemo), or with someone who had one?
How was it? And how did you deal with it, if you did?

Thanks A LOT!

 

[Shorty82]

Contact the resort you are staying at and have them put on your reservation a note about needing extra cleaning of your room for medical reasons.

It would probably be a good idea to go during one of the slower times of the year so the parks are less crowded. I don't know what May is like. Avoid the parks with Extra Magic hours that day, especially morning EMH, those parks are always more crowded.

Wearing rubber gloves, changing them somewhat frequently, and not touching your face unless you have just cleaned your hands would help I would think. Also avoid touching rails, trash cans, and other commonly touched surfaces. You can't avoid touching the rails and harnesses in ride vehicles but putting on a pair of gloves before boarding and taking them off right afterwards could help avoid picking anything up from a previous rider. Most, if not all, of the park restrooms are equipped with automatic flushers and faucets so you don't have to worry about touching a dirty, germ covered flush handle or faucet.

 

[PrincessWendyBird]

My immune system is also very weak. Sounds similar to you in some ways and I also seem to get sick after even a shopping trip or simple church service. I'm not sure if someone will be pushing you in your wheelchair. My husband pushes me and we have learned that I touch as little as possible - even the elevator buttons, etc. I also take lots of Purell travel sizes for every place we go and will be.
We do wipe down the room like crazy with anti-bacterial wipes. Like the above poster, request the special cleaning for medical reasons. We did that because every little bit helps.
I would also suggest Airborne before and during your trip and we up our Vitamin C intake. We get Vitamin C capsules from the Natural Food Store. The capsules are absorbed more effectively and did seem to help. That being said, we all picked up a cold last December. But I did not get nearly as sick as I usually do, so I consider it a success!

 

[mechurchlady]

It is more expensive but cotton gloves are $2 each and you can trash them when done or save them to be washed later.

http://www.disboards.com/showthread.php?t=1609469&referrerid=&highlight=mold

That is a very helpful thread that came out this month.

 

[don8life]

I would ask for a GAC. Tell them you can not wait in line with many people. They will provide alternate entrance or waiting room for you. My daughter had a transplant and this is what we do. She has multiple other problems as well. Alternate entrance works very well for us.

I find it is the adults that do not cover or was properly. I am a germaphobe and watch diligently.

As long as you take proper precautions you should be fine.

 

[SueM in MN]

Wearing rubber gloves, changing them somewhat frequently, and not touching your face unless you have just cleaned your hands would help I would think. Also avoid touching rails, trash cans, and other commonly touched surfaces. You can't avoid touching the rails and harnesses in ride vehicles but putting on a pair of gloves before boarding and taking them off right afterwards could help avoid picking anything up from a previous rider. Most, if not all, of the park restrooms are equipped with automatic flushers and faucets so you don't have to worry about touching a dirty, germ covered flush handle or faucet.

That sounds like a good idea in theory, but it doesn't actually work (and if you think wearing a mask would cause stares, people would really stare and be afraid if you were wearing gloves.
It would be better to just clean your hands frequently like you are planning.
Even in the hospital when we have very immune compromised people, we just have them clean their hands. There have been some studies that using gloves in that kind of way actually causes more problems - people get a false sense of security and end up spreading more germs with gloves than just by cleaning hands.
Germs that are on your hands need to get into the body to cause any problem. If you clean your hands before you eat, drink, apply makeup, touch your nose or mouth or other mucous membranes, the germs can't get in to cause any harm.

I would ask for a GAC. Tell them you can not wait in line with many people. They will provide alternate entrance or waiting room for you. My daughter had a transplant and this is what we do. She has multiple other problems as well. Alternate entrance works very well for us.

I find it is the adults that do not cover or was properly. I am a germaphobe and watch diligently.

As long as you take proper precautions you should be fine.

Actually, a lot of kids are getting "Cover your Cough" education as part of their school or preschool health teaching, so I would agree with don8life that adults are more problem in general.
There is a lot of information about GACs in the disABILITIES FAQs threads near the top of the Board.

 

[AnnieDan_Artlover]

Thanks a lot for all your quick and numerous answers!

I'm sorry if I seemed to imply that I thought children were somewhat miseducated and were the ones not covering there mouths when coughing or not whashing their hands... I was just saying : I need only one! It was an example.
My point is : usually, since kids are building their immune system, they sadly get sick more often than adults, and since they play closer together and share toys and such, they're most likely to share their germs, thus the fact that kids get sick so often in their early years (believe me, I know... the hospital I was working in? A children's hospital. And my best friend has 2 yo twins). But it's also a fact that an adult working in a similar environment (closeness, etc.) will go through the same... except for the fact that, of course, their immune system is already built-up to a point.

Sorry, OT here.

Shorty82: I'm going in early May (we don't really have a choice... but I guess it's the best combination of slow crowds, not too hot and our other personal factors. It won't be perfect for crowds or temperature, but not the worst either.)

PrincessWendyBird: My mom will be pushing my wheelchair, it's the kind I couldn't push even if I wanted to (travel wheelchair, I think they call it).

I'm leaning more and more towards : not using a mask (yay!).
And I'm not a fan of gloves. (when I worked at the hospital, I hated those even more than the mask!).
But I'll be using the Purell often and many good washes with warm water and soap whenever I can. (I'm a fan of the travel sized-Purell or One-Step! Me and mom always each have our own in our purses!)

It's just going to be important to think of not touching public things when I can and not touch my face (which can be hard, especially when those dam contacts are dry!).

Thanks for the suggestions I hadn't thought about :
-asking for special cleaning for medical reason
-Airborne (sadly... I just went to the website and they don't ship to Quebec. But I guess I could find some on the way.)

I realize that one thing I intend to do could ruin it all... Swimming! Isn't there a place worst than all others for germs than a swimming pool? Come on! A pool is a germ soup! But I'm pretty sure that Disney has high standards on water quality/treatment in it's pools... or else people would get sick all the time because of them...
And I'll make sure to take a shower after each dip... (and not swallow any water!).
Anyways... I'm not 7yo anymore, I'm not doing the mermaid much! ("look Ma! I can go touch the floor in the deep section!") It's more about floating and enjoying the therapeutic relief on my aching joints!

Thanks a lot for helping, and if you have other ideas, I'm all ears!

 

[OneLittleSpark]

You probably know about this already, but I'll post it just in case. Zinc improves vitamin C absorption, making it more effective. Also, echineacia (however you spell it) claims it can help fight off colds etc. Obviously, it's a hard one to monitor (how can you tell whether it fought off a cold that didn't happen?), but I have heard of some clinical tests that showed good results.

Also, of course, make sure you take care of yourself. Get plenty of rest, stay hydrated and eat well.

Have a great trip!!

 

[Shorty82]

I realize that one thing I intend to do could ruin it all... Swimming! Isn't there a place worst than all others for germs than a swimming pool? Come on! A pool is a germ soup! But I'm pretty sure that Disney has high standards on water quality/treatment in it's pools... or else people would get sick all the time because of them...

I understand that Disney uses more chlorine in their pools than is the norm because of all the people from all over carrying who knows how many germs.

 

[SueM in MN]

I would avoid the hot tub for sure.
The water is warmer, there is less water per person and because it's hot, people are sweating. There are also often more people in the hot tub than the hot tub can actually support. Another thing to think about is the when then hot tub jets are on, some of the germs in the water are going to get aerosolized.
There are a lot of reports of outbreaks related to hot tubs. Most of them are skin related.

 

[penguincrazie]

Last January my MIL went with us and she was in the middle of undergoing very strong chemotherpy and her immune system was very weak! She used the hand sanitizer and didn't get sick at all.

 

[PrincessWendyBird]

I understand that Disney uses more chlorine in their pools than is the norm because of all the people from all over carrying who knows how many germs.

This is so funny, because I was going to comment about the chlorine in the pools. Disney does use a lot of chlorine. In fact, we sometimes have issues more from the chlorine than germs in the pool. We filter out chlorine in our shower, etc. so the amounts they use in the pool affects us all. But, we still swim because we love it!

 

[mickeyminniefan2]

Hi my husband has a weak immune system due to transplant 4 years ago and we have been back to disney ever since. We stay in a camper at fort wilderness so we don't worry about the hotels. The main thing which you allready know is to wash hands frequently and try not to touch the railings. The one thing that his docs told him is to stay away from buffets and that was anywhere we go so just a suggestion. Also if your at a resturant or sitting somewhere and someone is coughing all over the place asked to be moved and they will do it very politely. He has never gotten sick down there and we even went on the disney cruise and had no problem. I actually got sick on the cruise and he didn't so have fun and just keep up what your doing.

 

[soarinfan]

Hi - I have the same problem. When I know I'm going to be exposed I do a number of things as a preventative throughout my trip - mostly natural with a drug or two kicked in. Here goes:

1. Golden Seal root - this is a natural antibiotic and I have never experienced side effects.
2. Olive leaf extract - East Park is well known to be the best brand. It's anti-viral, anti-bacterial and anti-fungal.
3. Colloidal Silver - a natural antibiotic.
4. Cold MD - Several drug stores carry it although it's a natural supplement type thing. It's got immune boosters in it.
5. Lots of vitamin C - 4000-10,000 mg a day, depending on how I'm feeling
6. Zinc - helps the immune system. keep it under 100 mg a day or it starts to depress the immune system.
7. Selenium - helps the immune system
8. Zycam - an over the counter cold remedy that can be used as a preventitive - I use the nose gel.

Concerning the cfs - you may want to do a google search on cfs and various infections such as lyme, mycoplasma, etc. I'm so convinced that cfs is often caused by an undiagnosed infection. Lots of people are coming around to this idea. I found that this was my problem after many years of being diagnosed with cfs.

You may want to google low dose naltrexone, another immune boosting drug with no side effects. It's starting to be used for cfs very successfully.

 

[mechurchlady]

You could check with spas for emersion therapy and other soaking treatments that might be cleaner than a public pool.

If you must swim in the resort pools then talk with the resort. Maybe you can get a schedule of their maintenance and cleaning so that you go into the pool right after it has been cleaned.

Another thread talked about buffets. The problem is two fold. First you have dirty people who cough and do not wash after using the bathroom for example. Second is the natural germs that occur when food is left sitting out. Wht happens when salad sits on the counter for an hours? What if employees dump new food on top of old food or vice versus. If you do have a doctor recommendation then you can talk to food services and ask that the restaurant make you a special plate instead of buffets.

PLEASE note that I am not saying buffets are dirty or unsafe anywhere. The only thing I am saying is that for a person with food allergies or low immune systems the restaurants guests can mess up the buffet and leave the low immunity or allergic person with an illness.

 

[AnnieDan_Artlover]

Wow!
Thanks a lot for the numerous answers!

My immune system is weak, but not down to the ground, so I think I should be OK with just the hand washing VERY regularly, being careful and adding some supplements to boost my immune system. Oh, and asking for extra cleaning for medical reason... and maybe ask for a GAC if I see the crowd level is too high and using Fastpasses isn't enough.

I've been to both public and private pools since I've been ill (not often, but I've done it), and never had any problem. Of course, it wasn't crowded Disney-style, but then again, it wasn't chlorined Disney-style either! So I guess I should be OK as long as I don't go in when it's super crowded (especially the hot tub). But... we wouldn't even want to go in if it were super crowded!

I've also been to buffets and never had a problem. So I guess either I was lucky (cross my fingers and touch wood!), or my immune system is good enough so that kind of problem doesn't affect me...

It may sound like : "hey, she says she's ill, asks for help, but doesn't take our suggestions and just says she won't do anything special anyways, what, she's nuts or careless?"

Of course not... It's hard to explain.
It's part : I do have a weak immune system, but not as weak as others. I just have to be careful, but I guess I'm lucky as I don't have to be as careful as others.
For example, I can play with my best friend's twins (2yo)... as long as they're not sick! And I have to wash my hands afterwards. And sometimes, I get sick anyways afterwards, because they were sick but mommy didn't know it yet. (hey, still worth it!)
And it's part : We don't want to make a fuss, overplan (like swim only according to Disney's pools cleaning schedule).
We're going there to forget about my illness, relax and have fun.
Of course, if I didn't have a choice, it wouldn't be the same thing. But I have some kind of a choice on certain things.

So I want to limit the actions taken in regards to my health to a minimum...

And it doesn't mean I'm asking you for nothing, don't care about the answers and suggestions and not listening!
I never went to WDW, so I need insight. And see, already there are ideas I'll use that I hadn't thought of!

It's just I can't use them all and don't want to use too much. Or else maybe I would stay healthy, but would become crazy!

Oh, and by the way... soarinfan... I really don't know how to say this without sounding rude... I really don't mean to... but I know well about CFS. I'm the spokesperson for CFS in our local association and over here, I'm the one explaining what it's all about in newspapers and radio interviews...
You're almost right though : CFS is often triggered by a viral infection (about 85% of cases). It's not verified yet if said infection is a cause or only a trigger. But even if Lyme disease is very similar to and confused with CFS, they're not the same thing.
Research has found many system dysfunctions (cardio-vascular, endocrinological, immune, neurological) as well as gene markers in CFS. But that's not the topic here.
Thanks for the list of products you suggest. Altough... I hope you never use them all at the same time nor often. Because natural or not, too much antibiotics leave you a good prey for SRAS, SARM and other antibiotic resistant bacterias!

Thanks again everyone!!!

 

[OneLittleSpark]

AnnieDan_Artlover, I'm sure no-one here is offended by you not taking every little bit of advice given here, and I can quite understand about wanting to avoid focusing on your disability more than you have to while on holiday (I think a lot of us can relate to that one ).

If you want to hit the pools when they're quiet, I find the early mornings are great. I don't know which way the CFS hits you, but if you're OK in the mornings, the pools open from about 7am (though I think it varies for different hotels). As we're coming from the UK, the jetlag means we can normally get in there first thing in the morning, and usually get the pool to ourselves.

I don't know if you're going to try the water parks or not, but if you do, here's a little tip. The water parks are often a lot quieter when the weather is a little over-cast and cooler. It also makes swimming more comfortable, as you're not burning up (though there is of course a greater risk of it being closed for storms). Now, this is just between us, you understand .

One thing I forgot to say before, if you need a bit of a break in the air-con, away from the busyness of WDW, all the First Aid stations have beds that you can just go and use as you need. I know that's not quite what this post is about, but I wanted to sneak it in there, just in case.

Good luck and have a great trip! Disney magic is by far the best medicine I've found!

 

[soarinfan]

Hi Annie - Just wanted to respond to one thing you mentioned. Forgive me everybody - I know it's off topic but I know a lot of people read these boards and if one person can be helped, that's important to me. Please allow me clarify something in response to the following comment. You said:

"But even if Lyme disease is very similar to and confused with CFS, they're not the same thing. Research has found many system dysfunctions (cardio-vascular, endocrinological, immune, neurological) as well as gene markers in CFS."

Lyme is a great mimic. It causes multi-systemic symptoms and it can look just like CFS as well as many other illnesses. I wasn't saying that all CFS is lyme, but that often those with lyme are misdiagnosed as CFS. I took the following quote off of chronicfatiguesupport.com:

"Many people in the UK with ME/CFS who are now being tested privately are finding they are infected with bacteria from the Borrelia species that cause borreliosis or Lyme disease. It wouldn't be surprising if a very significant percentage of those currently with a diagnosis of ME/CFS are actually infected with Borrelia or similar bacteria. An e-mail group poll showed that 80% of those with a diagnosis of borreliosis or Lyme disease had a previous diagnosis of ME/CFS. "

If you do a google search you'll see that it's all over the web. Lyme can also mimic and be mistaken for lupus, MS, Parkinsons and a host of other diseases. Testing for lyme has spread through the MS online community and many people are coming up positive.

I understand you're well versed in CFS, and that you represent the illness to the media. You may want to take a look at this since you have the voice to spread the word. It may not be what you have, but it's considered an epidemic in this country by many and it's known to be entirely underdiagnosed. Personally, I would suggest to anyone with CFS to have the test for lyme (newer tests by the way including bowen and Igenex).

So once again, forgive me for being off-topic but I really hope this helps someone out there!

 

[AnnieDan_Artlover]

Hi soarinfan,
well I'll just say, it's exactly what I meant by "Lyme disease is very similar to and confused with CFS". Confused with = misdiagnosed for.

I know very well about the bunch of misdiagnosis.
Lyme being misdiagnosed for many things, CFS being a misdiagnosis for many things and CFS being missed while patients have another, wrong, diagnosis. The list is almost endless.

You must also know that Lyme isn't all that common in our region because ticks aren't (well, at least for now they aren't... let's hope global warning won't change that).
So over here (I don't mean whole Canada, but my region), there aren't manye (if any) Lyme disease cases, and let alone people who had a CFS diagnosis that was wrong and later changed for Lyme.
Which doesn't mean I don't know about the problem! I've known about it for years. It's just not relevant.
Over here our main problem is still getting doctors and people to treat the condition as real and physical and not put patients with FM or CFS in psychological wards because they hurt or are confused. We're fighting to have doctors make the diagnosis, tests and prescribe medication to help with symptoms instead of just sending people back home saying it's all in their head.
I could go on and on, but you said it, it's off topic.

Don't worry, I know my topic inside and out, and more than many doctors. I'm sure I don't know all there is, but nobody does.

 

[soarinfan]

Hey Annie - boy do I know what you mean about people thinking we're crazy or even lazy. Glad you're doing the battle out there! Back when I was first diagnosed as CFS all those years ago I can't tell you how many people told me directly that I just needed a shrink or some psych drugs. It's a relief to be taken seriously now. That's because people like you made a difference.

You may want to check out http canlyme.com, which is a lyme site for Canada. Although it's probably not as frequent as in the U.S. Lyme is almost all around the world now. It travels with ticks on birds as they migrate. Yes, most likely that's not what you're dealing with I'd guess, but sadly when I go on the lyme boards, we're hearing from people all around the world. Even as far as Austrailia and the UK.

I didn't notice you're from Canada. We visited Quebec years ago - it's beautiful, especially Old Quebec City. Be well!