EEK- Travel Vaccinations!! HELP

[Cath1972]

Ok I have recently been diagnosed (October) with CFS after having symptoms for 4 years. Last year was a pretty good year for me and was getting back to my old active self without even realizing I had CFS. Not thinking about it I agreed to go on a once in a life time Gorilla trek in Uganda this February. I also started going back to work for a couple of days before Christmas. Low behold I have had a flare up of flu ache and sleep problems for the last 3 weeks. Problem is I booked the trek before the confirmed diagnosis and with no knowledge of the implications of vaccinations.

I now have found out that vaccinations are something CFS patients should try and avoid. But I can not (and do not want to) cancel the trek which is with my old mum. Physically I know I can do it. And I will do it even if I feel ill. However, I don't know what to do with the vaccinations as if they will affect me as suggested then; A) maybe I won't be able to do it physically with the added burden. and B) what is the long term implications?

It seems the recommended ones are

Typhoid
Hepatitis A
Diptheria
Yellow Fever
Malaria
and Tetanus

others they may try and push are
rabies

Back in 1999 I had most some of these (not the Yellow Fever or Hepatitis A) but unfortunately they are now out of date.

I know I may sound naive/stupid etc, but this is something I really want to do. But I am very worried about having the jabs. Dr Bansal recommended as far apart as possible and not when you are feeling ill. Well I have six weeks and feel ill!! Help has any one been in this situation, did it really make things worse, no difference (maybe better). Should I just do them all or just the yellow fever and malaria and be very stringent with hygiene and water/food?! I am going for 8 days.

I tried speaking to my GP today who seems to have absolutely no opinions, advice or even knowledge and has basically said I need to research it myself....

 

[AndrewB]

Hi there,

As luck would have it, i was reading a completely different thread and there was a link on that which is perfect for you.
Dr Shepherd (UK MD who suffers albeit seemingly slightly with M.E) wrote the following about vaccines ;

http://www.cfids.org/archives/2001rr/2001-rr1-article03.asp

Hope that helps.

 

[kgg12003]

In 1972 as a freshman in high school I traveled to Colombia for a Spanish class trip. I had to get the yellow fever vaccine and the typhoid. I was sick during the trip. And considered myself someone with very low stamina the rest of my high school years. Then 10 years later, as a nurse, I was brought up to date on vaccines with the hepatitis B. By the third injection I was exhibiting CFS symptoms and had to quit working. I realize hindsight is 20/20, but if this was me, I would cancel this trip and go to a place that does not require vaccinations. FWIW.

Best,
Karen

 

[Sushi]

Ok I have recently been diagnosed (October) with CFS after having symptoms for 4 years. Last year was a pretty good year for me and was getting back to my old active self without even realizing I had CFS. Not thinking about it I agreed to go on a once in a life time Gorilla trek in Uganda this February. I also started going back to work for a couple of days before Christmas. Low behold I have had a flare up of flu ache and sleep problems for the last 3 weeks. Problem is I booked the trek before the confirmed diagnosis and with no knowledge of the implications of vaccinations.

I now have found out that vaccinations are something CFS patients should try and avoid. But I can not (and do not want to) cancel the trek which is with my old mum. Physically I know I can do it. And I will do it even if I feel ill. However, I don't know what to do with the vaccinations as if they will affect me as suggested then; A) maybe I won't be able to do it physically with the added burden. and B) what is the long term implications?

It seems the recommended ones are

Typhoid
Hepatitis A
Diptheria
Yellow Fever
Malaria
and Tetanus

others they may try and push are
rabies

Back in 1999 I had most some of these (not the Yellow Fever or Hepatitis A) but unfortunately they are now out of date.

I know I may sound naive/stupid etc, but this is something I really want to do. But I am very worried about having the jabs. Dr Bansal recommended as far apart as possible and not when you are feeling ill. Well I have six weeks and feel ill!! Help has any one been in this situation, did it really make things worse, no difference (maybe better). Should I just do them all or just the yellow fever and malaria and be very stringent with hygiene and water/food?! I am going for 8 days.

I tried speaking to my GP today who seems to have absolutely no opinions, advice or even knowledge and has basically said I need to research it myself....

I have also traveled extensively (also Africa and Asia) not knowing I had ME/CFS and I've had just about every vaccination there is. Knowing what I know now, I wouldn't risk it again as I am pretty sure it made things a lot worse. Check out what you can get exempted from. Some countries have recommended vaccinations but they are not required for entry. And sometimes a doctor's letter can exempt you. I felt very sick after some of those vaccinations.

Also, does this trip involve a lot of exercise? It sound like you are on the cusp of the worsening of symptoms, which is a time to be very cautious. You don't always just recover from pushing and taking in toxins. There are a lot of us here who can tell you sad stories about this.

But, I wish you the best on this, as I know you want to do it.

Sushi

 

[maddietod]

For my mother's 90th birthday present, I accompanied her from Virginia, to visit my sister in California, a 6 hour plane trip. We stayed with my sister for 10 days.

I had no idea beforehand that I was too sick to make this effort. I was able to do all of the pieces, but I've been in a slow recovery for the 7 months since I got home. I ruined my relationship with that sister, and am working hard to salvage my relationship with my mother, as neither one believes I'm sick, so they read my need for downtime as anti-social and purposely rude.

Be very very careful as you make this decision. There is no way to know for sure how the vaccinations will affect you - it's highly individual. There's no way to know how tiring the travel will be. Just make sure you think it through, being realistic about all the possible outcomes.

Best of luck.

Madie

 

[LaurelW]

I would re-think very carefully whether you want to do this. After a period of relative wellness, I did some foreign travel that was very tiring and experienced a severe relapse when I got back, which was almost three years ago. I have not recovered yet, and my relapse was much worse than the CFS I experienced before. I had no idea that I could get that sick and would have done things differently if I had known.

 

[SOC]

My daughter had a set of pre-college vaccinations 3 years ago. Until that time she had very mild ME and was in remission most of the time. She was in remission when she got the vaccinations. She went downhill steadily for a year until she was quite ill -- should have been housebound, but was trying to go to college. She got H1N1 and pneumonia and would not have made it through another semester.

What probably happened to her was that the live-virus vaccines reactivated EBV and HHV-6 or stressed her immune system enough to allow them to reactivate.

I would absolutely not take, or let my daughter take, another live virus vaccine if we have any choice in the matter. They're just to risky for PWME, in my opinion.

You can have your immunity checked for some viruses by antibody titre, I think. If you're still immune from previous vaccinations, you probably don't need to get vaccinated again.

 

[*GG*]

Seems like you got some advice, now what are you going to do with it?

I doubt you want to get worse, and the unknowns are vast, and wouldn't you rather play it on the safe side?

GG

 

[Wayne]

Please Be Careful

Ok I have recently been diagnosed (October) with CFS after having symptoms for 4 years. Last year was a pretty good year for me and was getting back to my old active self without even realizing I had CFS.

Hi Cath1972,

It looks like you're relatively new to CFS, and appear to be "relatively" high functioning at this point. I don't want to be some kind of "Debbie Downer", but if there's one thing I've learned from having CFS for over three decades, it's that just when you think you can't feel more sick, and/or more debilitated, and/or more exhausted, and/or more neurologically challenged, etc., you generally end up realizing (from experience), that there really is no rock bottom. There's always further to fall.

Sometimes this downward spiral can happen for no apparent reason at all, but it often happens because of stressful situations that come into our lives. I myself got trapped in a hot, humid environment for several hours a few years ago, and never fully recovered. There are many other triggers out there that can trip any of us up at any time. So I feel it's imperative to always be vigilant, and choose our "risks" wisely.

I guess I would encourage you be cognizant of what other posters are diplomatically trying to get you to carefully consider; that what you're considering is really quite risky for someone with CFS. And to consider whether this trip, with the accompanying vaccinations, are worth the potential risk of years of devastating health problems. I know we can't hole ourselves up, and cease to live life. But there are safer things we can do, and then there are riskier things to choose from. I guess the challenge is to be as fully aware as possible of the risk/reward ratio.

I recently took an extended trip of 6 weeks (with most of it resting at strategic times and places). But I expect to be in recovery for several months at least. For me this was worth the risk. But vaccinations, and a trip to a foreign country with lots of endemic diseases that could clobber my already compromised immune system? I would never chance it. But we all have to do what we feel we need to do. If you do go forward, please be very, very careful.

Best Regards, Wayne

ETA: I'm not sure if you're aware that CFS used to be referred to as CFIDS, which stood for Chronic Fatigue Immune Dysfunction Syndrome. If you really do have CFS, then it is likely that you have a fragile and/or dysfunctional immune system. Something important to keep in mind.

 

[Cath1972]

Wow thank you for all your responses. I really had no idea of the implications. I am seriously worried now, but I still really want to go. I think step one stop worrying!! You have all given me lots to think about. And that is what I will do ... let you know what happens.

 

[ukme]

Aww Cath don't do it! Sorry to be negative. I'm a big travel fanatic and one of my biggest regrets with my daughter having ME, and right now I would say it's a mild form, is that I cannot take her travelling to places that require vaccinations. She would have been half way round the world by now. But it is what it is, it is not worth the risk.
But if you're going to go ahead....A while back when I was thinking about whether she should have the vacs against cervical cancer (she didnt) I spoke to KDM about it and he said to have the vacs at the same time she was taking antibiotics. Something about the aluminium in them I think..

 

[Valentijn]

I think some people have suggested taking a high dose of B12 right before getting the vaccines, to help the immune system cope.

Another thing you might be able to do is get vaccines without some of the nastier stuff. Many of the vaccines are made by multiple manufacturers with different ingredients, which you can view on a .pdf at the CDC site.

 

[SOC]

Cath1972, my guess is that since it has been only 3 months since your diagnosis you have not yet fully absorbed the huge implications this illness has on your life. I doubt many of us did at that point. None of us wants to shock you into a sudden comprehension of something that it takes months, if not years, to absorb. But you are considering an activity that is likely to be dangerous for anyone with ME/CFS. The odds are very good (not 100%, however), that a trip to Uganda with its associated vaccinations could move you from what sounds like fairly mild ME/CFS to moderate or severe ME/CFS which would keep you housebound or bedbound for many years to come. Is it really worth the risk?

The public is not aware of this, but we patients know very well that ME/CFS is an extremely limiting illness. The list of things patients have had to give up to survive with this illness is huge. Very many of us can't even go for a short walk, or do grocery shopping ourselves, or go to parties or family events. Travel, much less to areas with many endemic illnesses not seen in the Western world, is an unapproachable dream for the vast majority of us. We all understand that this is hard to accept at this stage in your illness. Many of us have stories of doing something prior to our full awareness of the illness that made us worse. What you're considering are several activities that are very likely to severely degrade your long-term functionality -- multiple vaccines (including live virus vaccines), travel to areas with new illnesses your body many not be able to handle, and the major over-exertion that travel entails.

I appears that you are relatively early in the illness -- possibly less that 5 years. That is the window where aggressive treatment is most likely to give you a full remission. In my opinion, it would be a lot smarter to postpone your African trip and seek aggressive treatment and reconsider your travel in a few years when you have the best possible maintenance treatment you can get and have a good ME/CFS doc who can advise you about the best way to do your travel. Also, research is starting to move, so there may be more or better treatment in several years that would make the trip less dangerous for you.

It sounds to me like you are asking the equivalent of "Should I climb Mount Everest with a broken leg and pneumonia?" No one here wants to destroy your dream, but many of us can see how dangerous it is with our illness and don't wish to see you destroy your health. If you go on this trip to Uganda, the odds are good (although it's not a certainty) that it is the last thing you will do outside your house for many years. Is it worth the risk? Only you know.

 

[snowathlete]

I tried speaking to my GP today who seems to have absolutely no opinions, advice or even knowledge and has basically said I need to research it myself....

No surprise there!!!!!

Regarding the vacines, i had some before i went to India for a work trip, shortly before i got ME/CFS. I was ill on the trip and looking back it was prob. ME.

In my opinion, if i was where you are now, i would only have the vacines if i was desperate to go, and despite the fact i miss going abroad, i dont think its worth the risk, at least not somwhere where you need vacines. Even if i was 100% recovered, i would be really reluctant.
If i really wanted or needed to go - and i get what your saying, its a trip with your elderly mum - i would consider what no doctor would advice ( and i am not a doctor and this is not a profesional opinion, perhaps not even a safe one) , which is to go without the vacines, and just be extra cautious. I wonder if that would be safer. You would have to look into how likely you would be to get one of those other illnesses if you didnt have the vacines. I expect the risk is much higher goign where your going, than my trip to India was, so it may not be a good idea in your case. If i hadnt had the vacines, going to India, i guess that i would ahve been ok, and maybe never would have got ME.

That is what this trip could cost you - you entire health.

Of course, it might be fine. We know so little for sure. If you do decide to get the vacines, then i would advice the following:
- Get your vacinations plenty of time before you go.
- Rest the day before, and the day, and the day after, even if you feel 100% - seriously, just sit and read or watch a dvd, but dont do anything else. There is alot we dont know about ME, but we do know that there are immune issues, so give your immune system the maximum chance of dealing with the vacines. And if you have any hint of a cold, or feelign under the weather, on the day of the vacine, then postpone it.
When i went to India, i stupidly had them done about three days before i went while working very very late to get stuff ready for the trip and then taking a flight arriving in India in the middle of the night - I expect i was rundown already. this was probably the absolute worse way of doing it.

 

[Sallysblooms]

There are so many wonderful places to go that need no vaccinations.

 

[Sushi]

If i really wanted or needed to go - and i get what your saying, its a trip with your elderly mum - i would consider what no doctor would advice ( and i am not a doctor and this is not a profesional opinion, perhaps not even a safe one) , which is to go without the vacines, and just be extra cautious. I wonder if that would be safer. You would have to look into how likely you would be to get one of those other illnesses if you didnt have the vacines. I expect the risk is much higher goign where your going, than my trip to India was, so it may not be a good idea in your case. If i hadnt had the vacines, going to India, i guess that i would ahve been ok, and maybe never would have got ME.

That is what this trip could cost you - you entire health.

Just to add another "not medically advised opinion," if I decided to to to Uganda (which I would never risk now) and had to have the vaccinations by law, I would get a homeopath to give me a remedy to anti-dote the vaccine. Many of them can be anti-doted with a homeopathic remedy.

But I agree with Snowathlete: this trip could cost you your entire health. None of us want to be dooms-dayers, but many of us have experience that tells us the risk you would be taking.

Best wishes,
Sushi

 

[anniekim]

You write 'and I will do it even if I feel ill'

This statement sets off alarm bells in me. Vaccinations for someone with true CFS is risky, many people have reported it has made their Cfs worse and not just for a short time. Secondly pushing oneself even if in your own words 'you feel ill' is extremely high risk when it comes to CFS. Perhaps, as you seem to be in the early stages of CFS, you have been able to occasionally push it, feel a bit worse, but then improve again. However, may have of is have found there reaches a point where after pushing it we no longer come back up and find ourselves suffering worse health and disability for years

I was gradual onset and in those first few years would have periods of great improvement. I pushed it once too much and am now into my 13th year of full blown CFS, the last seven severely. I am too ill to leave my flat where once I travelled the world

The medical profession, apart from a few treasured experts, still know little about cfs and won't tell you the big risk you are taking with your health. Please listen to the patients who have lived and breathed this illness. I absolutely understand your desire to want to go but the risks are high. It sounds to me your body is saying look after me, take it easy. Vaccines and pushing it at the same time when it comes to CFS is a recipe for a severe decline in your health, progressing the disease. Whilst pacing and not pushing the body in the early years of having cfs can mean a better prognosis, full recovery or keeping the illness at a milder level.

Only you can make the decision but do give this some serious thought. It would be I know very hard to tell your mum you might have to cancel, sharing the responses on here might help her to understand should you decide to cancel. I wish you all the best

 

[Sparrow]

I'm so sorry that you've been struck by this awful illness.

Like many others who have already posted, I was doing "basically fine" for many years after my initial relatively moderate and short-lived crashes, and then many years later started to slide just a bit and did something I thought would be only a minor stretch (because it was really important to me), and am now experiencing first-hand just how severe ME/CFS can get. In my case, I went only about three hours from home. But it was enough. I saw myself as having only a very mild case just prior to that and was relieved about it. Now I have been bed bound coming up on a year, and with the current rate of recovery it will be probably quite some time after that before I'm able to do even simple activities.

I think, based on my own experience and what I've heard from others, that there is a "danger zone" period when this illness starts to progress during which time most of us don't realize just how badly we can hurt ourselves. I know that I was used to "getting worse" after overexerting myself, but every time I got better again after. I now realize looking back that recovering from slump after slump was not a sign that I was more able to recover than other people or that I wasn't that ill. It was a sign that my illness was progressing and that my health was exceptionally fragile. I wish that I had known then what I know now. But maybe it's human nature to think that we're different, or that we couldn't possibly get that bad, or that since it hasn't happened to us yet it surely won't happen to us the next time we try something a bit risky.

So I totally understand why you want to do it anyway. I really do.

But I also think that it's the reality of this illness that it's not unlikely to crash you out to the point that you lose other things in your life that are also really important to you. If I have learned anything though this process, it is that if something seems like it might be a bit of a stretch, it is probably a really, really bad idea. There are always more things you could lose, and new lows you wouldn't have imagined previously. Lying in bed 24/7 for months in pain and not being able to even watch TV or read is worse than lying in bed 24/7 for months but being able to do things for a couple hours a day.

There is a mourning period involved in this condition that I suspect most people go through, in which we rage or cry a lot and mourn the loss of all of the things that were important to us but that we just can't have. Before that is the denial period where we give up some but try to have others anyway. I suspect that's where you are now. I know it's where I was at that time. Probably still am some. On the plus side, people are amazingly resilient with time, and you can sincerely learn to live with any number of crazy limitations eventually. It's just very, very, very hard at first.

Anyway, all of that is just to say that like the others I think making the trip, especially if you're in the stage where you're finding you feel ill after doing too much, is probably exceptionally risky. And that this really could be the time that you stop being able to breathe or think or sit up for years to come. But I get why it would be really hard to let go of until you've actually crashed out like that yourself.

And so I wish you luck and strength, whatever you decide to do.

 

[Hell...Hath...No...Fury..]

Hi Cath,
You've got some really good advice on here. Reading your post brings back memories!!! 13 years ago, I was going to go on the same trip as you, gorilla watching in Uganda and Rwanda. I never got the chance to get all of the required jabs because after having only the tetanus done, which was my first on the list, I reacted within hours of having it and went from being a fitness instructor to a paralysed corpse for years. So the trip never got done. I have since been all over the world but only to countries that require no jabs so I've avoided most malaria hot spot areas that sit on or near the equator.
Travel is most definitely do-able with ME depending on what stage you're at at the time and done with extreme care and if you're prepared to pay the price afterwards (often a very high price and for a long time but at least you have lots of fantastic memories to dwell on) but as far as vaccinations go (especially as you already have CFS) I'd personally avoid like the plaque. Gives me shudders just thinking about having one.
Good luck Cath with whatever you decide x

 

[Wayne]

Vaccinations and CFS

Hi again Cath,

Ive considered your situation on and off today, and been wondering if theres anything more that I might add in a constructive way. What came up for me was to try to give you a bit more information, and connect it in with some of my own perspectives. What may be most important regarding your situation is making the effort to research CFS & vaccinations yourself. In this regard, it might be helpful to search the database here at Phoenix Rising and see if you can find accounts of people with CFS receiving vaccinations, either before or after onset.

What you would likely discover is that many pwCFS were perfectly healthy before receiving a particular vaccination. You may not know it, but (as I understand) the profession with the highest incidence of CFS is the health care profession. Health care workers are often required to have certain vaccinations, I believe more so than any other profession. And Ive read numerous accounts that indicate a high percentage of those that developed CFS did so immediately after receiving these required vaccinations (I believe hepatitis was the most common culprit).

So, if perfectly healthy people can all of a sudden descend into CFS from a vaccination, 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. In short, a very foundational part of our physiology is struggling mightily to regain a semblance of balance. So I believe its very important to not allow it to get unnecessarily shocked by things we have control over.

Though the culture we live in would have us believe otherwise, CFS is not a silly little fatigue thing; or an annoying little fatigue thing. Its a MAJOR neuroendocrine disorder that has the potential to devastate lives. Whether suddenly, or by relatively slow onset, it has the ability to send literally every aspect of our lives into almost unbelievable turmoil. Besides physical, it can include our emotional, mental, psychological, social, and spiritual lives as well.

A lot of this is because most people, including doctors (and very often pwCFS themselves), usually dont understand the full severity of CFS. It seems at least half of people who do not have CFS have no desire to even try to comprehend that a person who has no definitive biomarkers for a disease (according to conventional medicine) can be so incredibly sick. So many pwCFS lose their jobs, their friends, even their families. They can end up housebound, or bed-bound, and even worse.

I dont know if what Im writing is appropriate or not. Please accept my apologies if Im overstepping the line of what you were looking for. There have been so many good posts and perspectives on this thread that I could highlight many of them. But I would encourage you to think very carefully about this account:

13 years ago, I was going to go on the same trip as you, gorilla watching in Uganda and Rwanda. I never got the chance to get all of the required jabs because after having only the tetanus done, which was my first on the list, I reacted within hours of having it and went from being a fitness instructor to a paralysed corpse for years.

Cath, CFS means having a VERY serious disease, with the potential to become extremely debilitating. It seems someone in the early stages generally has much more potential to improve than others who have had it longer term. Theres much that can be done to slow the progression, and in a few rare cases, some actually do fully recover. There's also much that we can do to protect ourselves. Educate yourself the best you can. And make the very best decisions you can for yourself.

Be well....

Wayne

P.S. I think it would be good to remember Sally's words of wisdom: :Retro smile:

There are so many wonderful places to go that need no vaccinations.