Vaccinations with ME

[SilverRose88]

Hey everyone.

Looking for some advice... I’m a long term ME sufferer, I became ill around the time I had the meningitis c vaccine when I was younger (coincidence? Who knows), I also had an allergic reaction to the tetanus vaccine when I was younger too. I’ve suffered mostly with severe ME over 15 years of having it but recently I’ve made some improvements, and I am due to go abroad (big thing for me) but the country says they recommend Hep A and Tetanus vaccine. My question is, if you were me would you get them? My doctor says it may be wise to not vaccinate given my history, and I’m due to talk to a nurse this week about it but I wondered what others would do. I was thinking of ‘just’ getting the Hep A vaccine (an immunologist said if I was to try to have tetanus again it would have to be in a hospital setting - my GP says this can’t be arranged within 6 weeks of me going away).

Thoughts would be appreciated, thank you

 

[bread.]

hey!

how severe were you and how severe are you know?

For me vaccinations also were an issue, maily Hep B and Tetanus, I am severe.

 

[Rebeccare]

If you're having allergic reactions to the vaccines, it may make sense to see an allergist. I started having mild allergic reactions to the flu vaccine not long after I got sick (hives, swelling), so my doctor referred me to an allergist.

The allergist did a few tests to try and determine which of the ingredients of the vaccine I might have been allergic to. There are also many different formulations of the flu vaccine, and he found one that I seemed to tolerate better (often these allergic reactions are caused by the inactive ingredients in vaccines). I wonder if there are different formulations of the tetanus vaccine that might contain fewer potential allergens.

Also, for several years afterward I received my vaccination in the allergist's office so I could be monitored by the team of doctors and nurses hour or so afterward--it sounds like they want to take this a step further in your case.

All this being said, doctors almost never advise against a vaccination unless there's a really really really good reason. So if your doctor is hesitant about giving you the vaccine, if I was in your shoes I would listen to them.

 

[andyguitar]

Having an allergic reaction to Tetanus vaccine in the past is a big red flag against having it again.

 

[geraldt52]

... if you were me would you get them? ...

Absolutely not.

 

[Wishful]

My ME triggered after a tetanus booster. I don't know that it was the cause, but it's certainly a possibility. Besides, tetanus vaccinations are apparently good for (60?) years, and it's not fatal if you do develop tetanus, so no, I wouldn't recommend a vaccination. I'd want to check into just how worthwhile the HepA vaccination really is, or if it's just pushed because it rarely harms normal healthy people who don't have ME.

 

[Moof]

My only relevant knowledge on the subject is that the last time I had an injury that was a risk for tetanus (a deep puncture wound), I was advised by the A&E consultant that the vaccination I'd had 30 years previously would probably still protect me, so they didn't want to risk giving me another course. I was fine, but of course there's no way of knowing one way or t'other whether it was anything to do with the vaccination.

Edit: posted at the same time as @Wishful, who seems to have had the same advice!

 

[gbells]

Before I started GcMAF I noticed that I was having a lot of immunity related problems, cuts becoming infected easily, re-infection of past root canals. At that time I avoided vaccines and had my nagalase tested. Nagalase was 3x higher than normal so I did Goelic sublingual GcMAF for six months and that lowered the nagalase. I also used curcumin and other supplements and was told that my teeth were stable so I restarted vaccinations with no problems. High nagalase is a result of high viral load or cancer and it keeps the body from generating antibodies, making vaccination pointless.

 

[SilverRose88]

hey!

how severe were you and how severe are you know?

For me vaccinations also were an issue, maily Hep B and Tetanus, I am severe.

Hi Bread

I’ve been severe in the sense of needing to be tube fed/was bedbound, then mostly stayed at housebound for years but 80% of my day was in bed, would need an ambulance to appts etc. as couldn’t tolerate sitting up in my wheelchair. Now I’m not bed bound and can manage small walks (although get the delayed PEM and suffering days after), still use wheelchair now but I’m more independent in terms of washing/dressing etc. Going away will be a big thing for me still, but I’m concerned that having a vaccine(s) could make me relapse. It’s pretty much taken me years to get to this point so I’m definitely feeling somewhat cautious.

Sorry to hear you’re severe by the way <3

 

[SilverRose88]

If you're having allergic reactions to the vaccines, it may make sense to see an allergist. I started having mild allergic reactions to the flu vaccine not long after I got sick (hives, swelling), so my doctor referred me to an allergist.

The allergist did a few tests to try and determine which of the ingredients of the vaccine I might have been allergic to. There are also many different formulations of the flu vaccine, and he found one that I seemed to tolerate better (often these allergic reactions are caused by the inactive ingredients in vaccines). I wonder if there are different formulations of the tetanus vaccine that might contain fewer potential allergens.

Also, for several years afterward I received my vaccination in the allergist's office so I could be monitored by the team of doctors and nurses hour or so afterward--it sounds like they want to take this a step further in your case.

All this being said, doctors almost never advise against a vaccination unless there's a really really really good reason. So if your doctor is hesitant about giving you the vaccine, if I was in your shoes I would listen to them.

That’s interesting! I actually saw a mast cell specialist immunologist who knew about my reaction to tetanus, and the fact I fell ill around the time I had the meningitis c vaccine, he just did basic allergy tests which I only reacted to wheat and grass pollen. He wanted me to have Hib, pnuemovax (sp- sorry!) & tetanus but done at the hospital. I didn’t end up having any as I was feeling cautious so left it. I’m due to see a dermatologist about eye eczema and suspect they’ll do allergy testing so maybe I will ask them re vaccines, although that won’t be before I go away.

 

[SilverRose88]

My ME triggered after a tetanus booster. I don't know that it was the cause, but it's certainly a possibility. Besides, tetanus vaccinations are apparently good for (60?) years, and it's not fatal if you do develop tetanus, so no, I wouldn't recommend a vaccination. I'd want to check into just how worthwhile the HepA vaccination really is, or if it's just pushed because it rarely harms normal healthy people who don't have ME.

I’ve done some reading and I’m wondering if I just stay away from any street food/food not prepared by myself/boyfriend and absolutely won’t drink any tap water just bottled (or brush teeth with tap water) hopefully I can reduce my risk of the Hep A. I’ll have to also avoid wanting to stroke any street cat/dog too because of tetanus/rabies. I’m wondering if this will be enough if I’m extra cautious whilst away.

 

[SilverRose88]

My only relevant knowledge on the subject is that the last time I had an injury that was a risk for tetanus (a deep puncture wound), I was advised by the A&E consultant that the vaccination I'd had 30 years previously would probably still protect me, so they didn't want to risk giving me another course. I was fine, but of course there's no way of knowing one way or t'other whether it was anything to do with the vaccination.

Edit: posted at the same time as @Wishful, who seems to have had the same advice!

My dog bit me a few years ago and they decided against giving me a tetanus shot in A&E after I said I’d had a reaction when I was little. I had bloods done and it showed I wasn’t covered either. I’m glad you were ok, it’s certainly a hard decision to make!

 

[GloriaDG]

Where are you going by the way?

 

[SilverRose88]

Where are you going by the way?

I’m going to Istanbul, I’ll be staying with my boyfriend’s family in their home. I won’t be going anywhere ‘off the beaten track’ so to speak.

 

[GloriaDG]

I’m going to Istanbul, I’ll be staying with my boyfriend’s family in their home. I won’t be going anywhere ‘off the beaten track’ so to speak.

Personally, I don't think there is more risk of getting tetanus or hepatitis A in Turkey than there is in Europe (which is just next to it, by the way). They will always try to sell you some vaccines when there is the occasion, but if you've already reacted to vaccines in the past, I would stay away. I really don't think there is much increase risk in Turkey than in our countries (anyone correct me is I'm wrong).

 

[HowToEscape?]

Hey everyone.

Looking for some advice... I’m a long term ME sufferer, I became ill around the time I had the meningitis c vaccine when I was younger (coincidence? Who knows), I also had an allergic reaction to the tetanus vaccine when I was younger too. I’ve suffered mostly with severe ME over 15 years of having it but recently I’ve made some improvements, and I am due to go abroad (big thing for me) but the country says they recommend Hep A and Tetanus vaccine. My question is, if you were me would you get them? My doctor says it may be wise to not vaccinate given my history, and I’m due to talk to a nurse this week about it but I wondered what others would do. I was thinking of ‘just’ getting the Hep A vaccine (an immunologist said if I was to try to have tetanus again it would have to be in a hospital setting - my GP says this can’t be arranged within 6 weeks of me going away).

Thoughts would be appreciated, thank you

It’s an individual thing. If your MD (not N.D!) knows your history and thinks x or y vax is not worth the risk for *you*, that’s a strong data point to not do it. Given the severe state you’ve been in previously, some small stimulus such as a vaccine is best avoided unless the need is dire.
It varies from person to person; I’ve been able to tolerate multiple vaccines since getting sick with no problems, but that was a risk I decided to take based on multiple opinions and a hunch of my own. One person’s experience with immunizations does not seem to be a reliable guide for others with this disease/family of disease.

 

[Seadragon]

Hi Bread

I’ve been severe in the sense of needing to be tube fed/was bedbound, then mostly stayed at housebound for years but 80% of my day was in bed, would need an ambulance to appts etc. as couldn’t tolerate sitting up in my wheelchair. Now I’m not bed bound and can manage small walks (although get the delayed PEM and suffering days after), still use wheelchair now but I’m more independent in terms of washing/dressing etc. Going away will be a big thing for me still, but I’m concerned that having a vaccine(s) could make me relapse. It’s pretty much taken me years to get to this point so I’m definitely feeling somewhat cautious.

Sorry to hear you’re severe by the way <3

@SilverRose88 Do you really want to even take the risk of triggering a severe relapse just for a holiday, knowing how bad severe ME can be already and how hard it can be to recover from?

I know how much you must want to go but I am saying this out of concern for you when I read that you have been very severe in the past.

I visited Istanbul myself 30 years ago and did not have any vaccines and fortunately, I did not get ill out there.

But everyone is different...no-one can tell you for sure whether you may come into contact with unfamiliar bugs that could make you ill out there nor whether you would react badly to vaccines intended to prevent those illnesses in otherwise healthy people.

I also did have a bad reaction to vaccinations including Hep A for a holiday to Mauritius 12 years ago when in a partial remission. I developed fever, shivering and upset stomach, increased fatigue, a rash and felt seriously awful for two weeks afterwards.

Thankfully, it did not cause a long term relapse at the time but, looking back I wonder now how I ever had the nerve to take such a risk and I would definitely not take a similar risk again if I am ever well enough to travel to far flung places again in future.

Probably best to take your doctor's advice on this one.