EEK- Travel Vaccinations!! HELP

[snowathlete]

how likely might it be that somebody who already has CFS, and a compromised immune system, might be severely harmed by the same? I believe anybody with CFS has an immune system that could be described as fragile; or dysfunctional; or totally discombobulated; or continually revved up, or completely exhausted; and more.

This is so true, and its important you take that in because in my experience, GPs simply have little or no idea at all (at least your GP admitted as much in this case - most just made assumptions and wing it), that ME has a big immune system component. But this is vital, beacause people with immune depressed systems are treated very different with almost everything medical, including vacinations, because their system potentially cant cope. So, whereas a normal person can deal with these things, no problem, we cant. Unfortunately though, most doctors place us (Erroneously) in the normal category, and so all their decisions regarding you are misguided and potentially dangerous.

Be pleased with yourself, because you have gone away and asked the right questions and armed with the knowledge you now have you can make an informed decision.

By the way, if you decide not to go, to help you deal with missing out. Make sure you look at it the other way around: you are not missing out on this trip, you are avoiding being much more sick, for much more longer.

Its like side stepping a bullet.

 

[Cath1972]

Wow, thank you for all your views, please keep them coming. Yes you are right, I have fought the diagnosis, and I probably am in denial as I know I am one of the lucky ones, ie relatively active. I cannot imagine feeling any worse then the worse I do (which can leave me feeling very fluey and highly strung for a few weeks - sleep goes out the window, but mind seems to be working overtime). I am gutted about the this. If it weren't for the yellow fever I think I would risk it and go without vaccinations and just be extra careful, as I had all the other jabs just over 10 years ago. The yellow fever is the scary one, both in vaccination and in the potential illness/death and the way of transmission (day biting mosquitos). I have wanted to do something like this for years and years, and I won't get the chance again, especially with my mum who lives abroad. I have spoken to the head of my CFS clinic who suggests I go and 'enjoy it', but I should get the yellow fever but just do it when not feeling fluey. I have spoken to a Dr Charles Shepherd who wasn't clear but said the same if I was feeling ok to have the vaccination but not to have it if I wasn't, and he would no way go to Uganda without the yellow fever. I have spoken to the travel nurse, who said it was my decision and did not look at me like i was mad, and told me none of them were compulsory, and if I decided not to have them just to be careful with hygiene etc. Her take on it, although its risky, 100's of people do, through ignorance. The trip is paid for and cannot be cancelled without incurring huge costs that I can't afford, but I do hear you all shout 'your health is worth it'. I have read pages and pages on the internet of CFS reactions to vaccinations, but sadly not Yellow Fever. So I am still undecided.


I am intrigued that many people have referred to me as being in the early stages?! What do you mean? Does this mean it progresses into something else, or is this a chance to recover?. I would say I have had this since about 2008. After a dreadful birth of my second child, long painful labour, epidural, failed ventouse, emergency C/S, baby in intensive care, me left split from pubic bone to breast bone with a clinically massive hernia, 3 months later failed hernia op with general anaesthetic. The stress of having my insides trying to escape every time I stood up for the next years whilst binding myself, waiting for a total reconstructive surgery that I had to wait a whole year for!!! Funny though I was fine once that was done. Then about 6 months later (when I was back at work) I seemed to go down with everything going, sore throats, sinus infections, chest infections, pleurisy and then to finish it off stomach bug, yeah then I felt rubbish! Left work and have taken it pretty easy since then! Does anyone recover? I met a girl once who claimed she was so bad she was in a wheel chair but recovered and runs, works has adopted a 5 year old. I don't know the details. When I live in Greece in 2009 to 10 I felt great. I was walking and swimming every day. I just had an occasional period of dizzyness that I put down to the heat. But no flu ache, no sleep problems and no crashing. Good food and sunshine and a slower pace of life!

 

[Sushi]

I am intrigued that many people have referred to me as being in the early stages?! What do you mean? Does this mean it progresses into something else, or is this a chance to recover?.

Yes, it too often progresses into a stage where people are bedbound, cannot think or remember anything, can't tolerate light or sound and cannot walk. And yes, it does sound like you are in the early stages and you do have a better chance of recovery then. Quite a few on this forum have been sick for 20 or 30 years. That is what we are warning you about. We never thought that doing that extra bit of strenuous activity would do us in either.

I had the yellow fever vaccine twice and was very sick both times. Not that I immediately collapsed into full-blown CFS right after, (though some do after vaccines), but it contributed to the downhill slide.

When you say you cannot afford to cancel this trip, probably the majority of us here are using all our money for treatment and have been for years--many selling their homes to pay for treatment. I have not been able to work for 7 years and many others have not been able to work for much longer.

But, truly, we understand your desire to go. The doctors who are giving you advice are not living with this disease.

Sorry you have to make such a hard decision.

Best wishes,
Sushi

 

[Snow Leopard]

Many of the vaccines are made by multiple manufacturers with different ingredients, which you can view on a .pdf at the CDC site.

Yes, there are often modern alternatives to live attenuated vaccines (my CFS was triggered by a live attenuated Polio vaccination).

Instead of the live Typhoid vaccination, you can have the ViCPS subunit vaccination.
For Hepatitis A, you can use the old style immunoglobulin immunisation.
Diptheria, Tetanus uses a modern recombination vaccination.

I'm not sure about an alternative for Yellow Fever.

Malarial vaccination has uncertain efficacy (not routinely recommended) and so travellers usually choose to bring anti-malarial medication with them.

 

[Sallysblooms]

We all just want to spare you some problems. I have had this for over 20 years. If you have CFS/ME, you have to respect it by not overdoing it and getting a really excellent doctor like Integrative, to help you with blood testing and supplements. I wish I could start over, I would not have gotten so ill. Overdoing it, which is classic, and not having good doctors at first was bad. I am much better now, but only after learning a LOT and finding the best integrative doctors.

 

[SOC]

I am intrigued that many people have referred to me as being in the early stages?! What do you mean? Does this mean it progresses into something else, or is this a chance to recover?. I would say I have had this since about 2008.

Yes, the illness very often progresses -- although I suspect few docs in the UK will tell you so. I was where you are now about 7 years ago. Now I'm housebound and can do 3-4 hours of mild activity on good days -- like tutoring, not housework or exercise. I didn't do anything exceptional that made me worse, such as getting live virus vaccines or traveling to Africa, but I did not respect the illness early on and tried to continue a normal life. That was enough to make me worse over time. There are plenty of stories similar to mine, but there is also a lot of variety in our progression as well.

There is some anecdotal evidence that getting aggressive treatment within the first 5 years or so can put some people into full remission. It appears, though, that they may still have to be careful in order to stay in remission. My daughter is currently in full remission and there is NO WAY I would support her getting the vaccines you are planning or traveling to Africa. Maybe in a few years if we know enough about this illness to mitigate the consequences of major immune insults, but absolutely not now.

 

[Sparrow]

I cannot imagine feeling any worse then the worse I do (which can leave me feeling very fluey and highly strung for a few weeks - sleep goes out the window, but mind seems to be working overtime).

I couldn't either. And then, with a crazy rapid decline, I was so weak I couldn't roll over on my own, and couldn't walk to the bathroom anymore without assistance, and couldn't breathe sometimes, and was in constant pain, and didn't have the brain power to read or watch tv or talk to people or play basic children's games even for a few minutes. It was awful. And it truly didn't seem like it was possible that it was happening to me. And the improvement has been achingly slow (I was there at rock bottom for many months, and I imagine even if all goes well it could be many years before I'm anywhere close to independently functional).

And I literally had a conversation with my husband before this about how lucky I felt, since it seemed that I had such a mild case. And did you know that some people have to use a wheelchair? Wow, that must be awful. ...I can't even use a normal wheelchair now. Can't sit up like that for that long.

And I am still very, very careful, and still count myself lucky. Because there are people out there who have constant vertigo as well that gives them no break from the nausea, and people who aren't able to swallow anymore, and people who can't talk to their loved ones at all, or can't stand to be without a blindfold and ear plugs at all times, or who end up in the state I was in and take much longer to recover. Sincerely, I could myself super lucky, despite still being confined to my couch or bed and unable to sit or stand without difficulties.

And for what it's worth, I "recovered" too. Twice. I thought it was really bad, and then I got gradually better and could exercise and carry out an active full-time job and everything. ...And then it came back. I think until the medical community has a better understanding of what's wrong with us and how to truly fix it, we'll never truly be out of the woods.

I guess I'm just trying to say that we've all been where you are. And none of us dreamed it would be us who got hit that badly.

So we just want you to know, so that hopefully you can make a more informed choice than we did. I feel bad because all of this must sound so horribly depressing. And it is, in its way. Takes some processing. But on the positive side, there is hope to it too. And the advantage of not having hit bottom yet, so that you can still turn things around before you ever do. And for all the unpredictability of this illness, I think we have a lot of control over pieces of it too, if we're able to truly rest ourselves enough (though I would guess that very, very few people are actually able to spend long hours on focused resting unless they don't have another choice. We all cut down as we're able, though, and often much more than we thought we'd be capable of).

It does sound like you're in the "early stages", before completely wiping out. You're still considering taking a trip like that, even if it might be hard or you think you might temporarily pay for it. That says something about your capabilities. It also says that you don't seem to have yet hit that wall where you fall and don't come back up again this time around. I hope you never do. And if I could give you any advice to keep it from happening, it would be to back right off of things as soon as you start getting those little warning signals that you're pushing too hard (you know the ones - the kind of exhaustion, weakness, etc. that tells you you're tempting a crash), because you never know when this could be the time that you don't bounce back. Better yet, stop long before they get there. It may be too late by the time you feel them.

...And possibly methyl and adenosyl B12. But that's a different story...

Again, good luck to you. This may not end up being the life you pictured yourself living, which is a brutal thing to come to terms with. But it will be a good, different life. Best wishes to you in discovering it.

 

[anniekim]

I imagine you are finding it hard to take this all in and as you may well have not come across any medical professionals confirming what we are saying may wonder whether we might all be exaggerating. We just want you to be aware of what can happen. Ultimately it is your decision of course

I note you say the head of the Cfs clinic says it's fine and just go ahead and enjoy it. The problem is if you are in the uk a lot of these clinics use the bio psychosocial model of cfs/m.e and believe a virus may have triggered an illness but the reason why the illness remains is because the person has become scared to do things. This model is rubbish yet much of the NHS holds on to it. So if the head of the cfs clinic ascribes to the bio psychosocial model of CFS they probably think a holiday is a great idea as it will stop you fixating on your health etc As someone noted on here many doctors don't realise that immune dysfunction is a big part of cfs/m.e as is the disease progressing. As such they may well not give you good advice. In years to come this hopefully will change.

 

[snowathlete]

Some good advice in this thread. The fact you feel able to do the trip clearly shows you aren't as bad as many people - not that I'm trying to belittle your me/CFs. It seems the first five years are your best chance to get well and failure to do that means you will be more likely to get worse after that. You sound better than me and yet there are many people worse than I am! This year for me is my best chance of getting well, my focus is on trying to achieve that. I've had this about three four years now. I feel my chances this year are not as good as last year...so take your chance. If you do get well then a tri in the future isn't out of the question.

It only dawned on me last year after much research that the longer you have this illness the worse it gets. You have kids, or a kid, and have a life ahead of you that could be great, really great. Don't put that in greater jepordy for his trip.

By the way I'm going to practice what I preach and try and rest that little bit more myself.

Wishing you all thebest

 

[Valentijn]

I didn't get very sick and diagnosed until 2011. But in retrospect, I've probably had a milder case of ME/CFS, or at least many of the symptoms or underlying problems, since my teens. I thought it was normal to be physically exhausted after a day of class or working an 8 hour day in an office, because that's how it always was for me, and other people were somehow more motivated than I was to be able to continue to be active.

As a result, I often pushed myself to do more, including when I was getting very sick and was trying to pass intensive language classes. And now that I know I'm sick and that I shouldn't push myself, I still do it, albeit on a much smaller scale. And then I crash, sometimes mildly, and sometimes badly. But as long as I'm crashing or exhausting myself, there's no chance I'm going to improve. Each time I do it, I get a bit worse and don't seem able to get back to where I was a month or two ago.

The occupational therapist I started seeing recently has helped put it into perspective. The first thing she did was draw two parallel lines on a white board. Those are my limits. Then she drew a sine wave under the top line, with the peaks touching that top line. That's what I'm doing now.

I routinely stay in my limits ... BUT, when I do something extra, I don't have any energy reserves because I'm already at the upper limit of what I can do. I exceed my upper boundary, and I crash. She then made that upper boundary line slope down, to demonstrate that when I crash, my upper boundary becomes lower.

Her point was that my routine activity needs to be farther below the upper limits of what I can do without crashing. Then, when I inevitably end up doing too much once or twice a month, I should have the reserves to handle it better, without causing a long term problem.

To get a better understanding of my individual limits, I've been filling out an activity log, showing what I'm doing throughout the day and for how long. Points are added for light, average, and heavy activities (defined based on my perception of how difficult those are now), and points are only subtracted for sleeping and meditating. Even watching TV or using the internet takes effort now, and adds points. On a day that I crashed, my total was +12. On the days that I feel okay, my total is +3 or so.

The therapist's general advice is to reduce total activity by 25%. This was a very hard message for me to get. I'm already doing so little, and feel crappy about doing so little (I guess I should talk to the psychologist about that next week!), that it's hard to be told that I need to be doing even less.

You asked if this disease is progressive. I don't think it necessarily has to be, but I think it largely depends on our own behavior. If we keep pushing, even just a tiny bit, we run the risk of steadily getting worse and worse. On the flip side, if we stay a safe margin below our upper limits, maybe we have a shot at recovering some lost ground.

If you do choose to go on the trip, don't push yourself while you're there, and make accommodations for unavoidable activities that will be hard on you. Get lots of rest before and after vaccinations, flights, etc. Make as few concrete plans as possible, and don't feel like you're wasting your vacation if you spend more time at your hotel than exploring.

 

[Cath1972]

Hey Peeps I am back!

I went to Uganda, I had a wonderful time! I have to say I was irresponsible in the end and went without any vaccinations except for malaria tablets. I certainly am not condoning what I did or encouraging it either. It was a very long and hard decision and one that was probably more stressful than the whole trip put together. So far (touch wood) I did not pick up any nasties, but I did develop a mild case of OCD when it came to water, sanitary, toilets, eating and mosquito nets etc! I was very lucky we arrived at the end of the dry season, one which hadn't received any rain for over 6 weeks, so mosquito and damp were very far and few between.

In between my last postings and this trip I had been started on a weekly injection of 1mg of hydroxocobalamin, at which point I had had 3 weeks worth of injections. These certainly have had a desired effect on energy levels, to the point of the first one, I was actually buzzing and wanted to go for a long run. (But I behaved and resisted.) I have also started 10mg of Amitriptyline at night, which certainly helped with any insomnia moments. At the moment, I only use about 5mg only when I need it as my sleep seems to be good at the moment. I am also taking daily; Co Enzyme Q-10 (about 150mg a day), 500mg of l-carnitine, Siberian Ginseng drops, Echinacea Drops and 1 Vitabiotics Immunace a day, (containing antioxidants, D3, C, E Betacaotene, zinc, selenium, SOD, Catalase and GShPX amongst other things).

On the trip, we were getting up at 6.30 every morning and in bed by 9.00pm. Very little alcohol (the occasional beer) and good solid three meals a day and bottles and bottles of water. Although I was desperate for a lie in I think it suited me quite well, and seemed to be refreshed when up and about.

We did a lot of driving in a minibus and staying at tented camps each night, not a relaxing holiday by any means. There were 3 main treks. One for the chimps which was for 2 hours on moderate ground. Waterfalls, one for 3 hours on moderate ground and finally the big one Gorillas, 6 hours through thick jungle, very steep etc, etc. These were interspersed with days of driving, so they weren't one after the other.

So how did I do? Well, day to day I felt ok. Come 9.00pm, I wanted to got to bed. 6.30am I wanted to stay in bed but did get up and out and felt surprising good. Encouraged by my initial reaction to the hydroxocobalamin injections and knowing that I would miss 2 while away, I took Holland and Barrets B-Complex sublingual liquid with me, which contains 1200ug of B12, 2mg fo B6, 30mg of B5, 20mg of B3, and 1.7mg of B2. This I took on a few days, namely the ones with the treks. I briefly read the methyl protocol (But don't really understand it... more on that later) but I did read something about potassium depletion, so at the last minute I threw into my bag some sachets of Diarolyte (rehydration solution powders for diarrhea etc) which contain sodium chloride 0.47g, potassium chloride 0.30g, glucose 3.56g, disodium hydrogen citrate 0.53g, as a desperate precaution.

Ok so the first trek (Chimp, 2 hours moderate), felt like a stroll round some woods, with some hills and bridges. Really enjoyed it, however once back at the camp I could not keep my eyes open with in a couple of hours, my old symptoms of walking into things like a drunk, fell asleep for an hour. Next day however, woke up feeling groggy and felt very weak. This continued. That afternoon, I thought I would try the sachet, and yes it did have a positive effect, felt better but still weedy. I still felt a bit weedy the following day, Therefore I forewent the early morning trek to the waterfalls. Instead I found myself going for a gentle stroll for a bout a 1km down a road.

With that reaction, I was understandably a little disappointed and very apprehensive about doing the gorilla trek, but I did it. Now that morning I took my sublingual b12, I made up two more sachets and drank one straight away. The other one I had in a small bottle to sip during the trek, along with a litre bottle of water. If I had known what the trek was going to be like before I went, I would not have gone! I had a stick and paid a porter to carry my bag and water, but it was really hard. Now I am not unfit and still quite young, but It was a hard trek, and guess what? I seemed ok! I did it, and the next day I seemed ok! - no reaction like the Chimp one! After that it was pretty much driving around for days and flying, which in itself was tiring, but not physically taxing. When I got back to Blighty, it took about a week to get back into the rhythm of things, some tired spells. I have also experience, before and after (but surprisingly not during) some MILD underlying gentle flu aches. But I have noticed that these seem to occur when people around me are unwell. Before I went, my children and husband all seemed to be having cold bugs and stomach upsets. Coming back, there seems to be flu and a nasty stomach bug. People close to me are getting ill, but I just get my flu aches, but no symptoms. I never seem to get ill anymore since this all started, just achey, but I am definitely noticing that my flulike aches coincide with other peoples lurgies!

So I am pleased I did it. CFS hasn't beaten me yet! I am encouraged by the B12 injections and intrigued by the B12 protocol, but am finding it really hard to understand, so if anyone who can explain it in real simpleton terms with exactly what I should be taking and how and maybe some UK brand/shop suggestions I would be very grateful. I keep reading and re reading it, are Fredd and Rich's protocol the same? Have they been modified at all? Is the protocol on Dr MyHills website the same? If anyone can help I would be really, really grateful. Should I follow it whilst having the injections etc etc?

Many thanks and thanks for listening. I think this is the best website ever, I am learning so much about this condition from here...

 

[LaurelW]

Dear Cath, I'm so glad your trip was a success! No matter what happens in the future, you will always have those memories. I think you were wise to avoid the jabs as they could have been a complicating factor.

 

[snowathlete]

Glad you had a good time, and by the sounds of things, probably avoided any heavy penalties. Im pleased for you.