Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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A Year in the Life: From Vaccination Trigger and Antibiotic Treatment to a Diagnosis of ME (Part...

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 16, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    It has been a devastating twelve months for Andrew Gladman after he took well meant advice to ensure his vaccinations were up-to-date. He was ready to begin study at university, but the vaccines seem to have led to some very obvious and bad reactions that did not immediately resolve. It appears that this trigger, not uncommon among a significant minority of those with an eventual diagnosis of ME, and perhaps his reaction to the treatment with antibiotics, are what has led to Andrew's subsequent ill-health and to his later diagnosis. In his own words, Andrew takes us through this difficult and unexpected period in his life...

    It’s always said that time flies when you’re having fun, but for me this last year since the onset of my illness has really flown by, and I can honestly say that it has not been fun.

    A year seemed such a long time before I became ill, but it seems like only yesterday that I was as fit and healthy as any eighteen-year-old could expect to be.

    I’d just finished my A-levels, had achieved some good grades in Math, Biology and Chemistry, and secured a place at university to study Biochemistry. My life really did seem to be on the up and I was happy and looking forward to the future.

    The previous few weeks had been spent slowly and systematically packing my stuff into boxes and I was all but prepared to leave for the next stage in my education. I remember my Mum mentioning that I should ensure my vaccinations were up-to-date before I attended university - as my brother had done the same a few years before.

    I had missed my boosters at Secondary school, so I thought now was as good a time as any to get them topped up - just to be on the safe side - and so I booked myself into the local surgery shortly thereafter.

    It did seem a little strange to be sat there, in the waiting room, as I’d never really been sick in my life before - other than the usual colds and flu - but the nurse called me in and decided that I’d be in need of a Tetanus and MMR booster. I agreed - despite my dislike of needles - to have them done there and then, and ten minutes afterwards I was on my way home...

    I remember feeling a little out of breath as I walked back, and as ridiculous as it now sounds, colour began to fade from my vision and I soon found I couldn't continue any further. I lowered myself to the ground at a grassy patch beside the road, and sat there holding my head. It must have been a sight for passers-by. Like-as-not they put my situation down to another drunk teenager cluttering the pavement!

    After ten minutes or so, I managed to get back to my feet - heart pounding and still feeling weak - and staggered back home. I sat down on the sofa and watched a little TV before I felt the onset of a migraine. Taking two Aspirin I then went to bed. These symptoms continued for the next week, but I thought little of them and continued to pack for university, simply putting it all down to a reaction to the vaccination, and thinking that it would pass in a few days.

    More than a bad reaction?

    The next morning I woke to incredibly sore muscles across my body and, strangely, under my arms. I had a look in the mirror and sure enough my left underarm was quite badly swollen and there was a definite lump. I remember clearly that unpleasant feeling in the pit of my stomach. I've always been something of a worrier and I figured a lump was never a good thing to find. I walked down the stairs looking gaunt and pale, and mentioned it to my Mum.

    She rang the surgery, making me a prompt appointment the very next day - courtesy of a cancellation. The doctor poked and prodded, as they love to do, and concluded it was a cyst and promptly I was prescribed a course of Flucloxacillin. I remember asking at the time if it could simply be a side-effect of the vaccinations, but the doctor seemed very dismissive of this idea.

    For three days I continued taking the antibiotic despite the new onset of quite bad nausea and the usual intestinal symptoms that can accompany broad spectrum antibiotics. However, I did feel reassured by the doctor who had promised me that the swollen underarm would abate in a few days. Thankful for this, I even went with my Mum and Dad to do a little clothes shopping for university. During the car ride I felt incredibly ill and the nausea seemed to have gotten quite bad. Being car sick is something I've never experienced before, and this was certainly the most ill I've ever felt in a car.

    That night I felt incredibly exhausted, the malaise seeming to get even worse from trying to plough on regardless. The nausea was getting very bad at this point and the thought or smell of any food made me feel even worse. My Mum, realising I didn't feel good but wanting me to try and eat, made me a plain jacket potato, hoping I could manage the bland meal.

    I sat down to eat it in front of the TV - blurry eyed - and took a few bites and was shocked when a gush of blood poured from my nose. I rushed off to get some tissues and returned, but by this point the nausea had gotten the better of me and I couldn't eat anymore. Mum was getting really rather worried, and it seemed that I wasn't responding well to these antibiotics – getting more of what appeared to be side-effects than the original problem seemed to be worth. The next morning Mum rang the surgery and I was switched from Flucloxacillin to Clarithromycin.

    That afternoon I staggered to the car with Dad, and we drove down to the surgery where I picked the new prescription from the pharmacy and we were once more on our way. I continued with these new antibiotics for a further day, but I was completely unable to keep any food down. So, I decided to stop taking them until I was at least again able to eat, a move I felt I had little choice in making.

    I remember thinking at this time, how strange it was that my initial complaint of sore and swollen underarms had became secondary to everything else - and that the antibiotics themselves had done nothing for the underarm complaint.

    For the next week I spent the days laying in Mum's bed, as I always used to do when I was ill as a child, watching the clock and wondering why I felt this way. Over the course of a week, my weight had dropped alarmingly from my normal 11.5 down to 9.5 stones. Any food I did manage to eat simply led me to vomit it back up.

    This effect on my ability to eat continued until finally the nausea seemed to abate a little, and I was once again able to manage small meals and snacks to keep me going. I still felt the nausea almost constantly, but thankfully once I could eat again, the weight loss stopped. With the focus no longer quite so much on my inability to eat, it became apparent how ill I had become in other respects namely through the plethora of symptoms that I hadn't even been aware of.

    I had widespread muscle pain in my legs, arms, chest and neck along with bruises around my knees and elbows. My eyes seemed sore and bloodshot and further to this the lump under my arm continued to ache and had been joined by one in my other underarm. It became apparent to me that these were swollen lymph nodes and I began to put them down to the vaccination and blamed all my other symptoms on a reaction to the antibiotics.

    Trying to get back in the saddle

    Roughly 3 weeks following the vaccinations I remember walking into town with one of my friends from Sixth Form. Looking back, I admit it was a bad idea to attempt this after such a period of illness, and yet I was starting to feel a little better and thought it was best to try and get back in the saddle. Given we were both leaving for university soon it also seemed a nice way to say goodbye for a while.

    He seemed quite shocked as I revealed what I’d been going through, especially given the bruises I had around my joints. I didn't feel too bad during this trip, but later that day and during the one that followed, I really began to suffer for the exertion. All the malaise, nausea and joint pain returned with a vengeance – and I simply couldn't explain why this had happened. But a few more days passed and this post-exertional-malaise abated.

    I was offered the chance to go with Mum and Dad to see my uncle at his new house, as he had only just moved in, and I jumped at the chance to get out - really looking forward to it. When we got there he was still unpacking the moving van with my other uncles and I was roped into helping. I didn't feel too bad, but after about 45 minutes I began feeling quite unwell and spent the remainder of the day sitting in his new home while people scurried past me with boxes and furniture. The nausea seemed to return whenever I felt more malaise and I managed only to eat a single packet of crisps for the entire day.

    It had been nearly a month since I had first become ill and it had become more apparent to me that something was quite seriously wrong. And yet, fast forward another week, and it was my own moving day - life goes on... I was finally due to start university and I had to get up quite early and begin packing the car with my boxes. I had hardly touched them since becoming ill, but thankfully most of the work was done.

    I have to admit I felt both a sense of excitement and nervousness - but I’m sure everyone does moving from their home to university for the first time. The drive down was roughly an hour and a half during which I felt quite ill - not only for the trepidation of a Fresher but also because of the illness I’d been battling against. Still, I wasn't about to let being ill stop me from attending university and besides, the illness couldn't possibly last that much longer… Could it?

    Unfortunately, I’d been assigned a room on the third floor of my campus accommodation in the only block without an elevator. My parents and I began the multiple journeys transporting heavy boxes from the car to my new room and before I knew it they were off and I was alone. I’m not too proud to admit that it was a little upsetting to be left there as they drove away, but I decided to go and make a cup of tea in the communal kitchen and get to know my new flatmates.

    We chatted for a while and before I knew it they were all getting ready to go out and enjoy the Fresher's party the university had arranged. I decided to give it a miss given my illness and all the exertions I had undertaken, and had an early night. I awoke to sore muscles, nausea and a bad headache – eventually culminating in another trip to vomit in my new en-suite bathroom. It seems a little funny to look back, realising everyone in my new flat was likely doing the same, but for obviously different reasons.

    My first day was spent signing-up to the university Health Centre, so that I could see a doctor regarding my ongoing illness. Luckily it was only a five minute walk from my Halls of Residence - a fact that I would come to be very thankful for over coming months. The next few days continued in similar vein with me feeling ill while everyone else went out bonding and having a good time, and it is likely for this reason that I never quite got to know all my flatmates.

    That Monday, lectures were due to begin. I took the long walk from my Halls down to the Life Sciences Department and met up with a friend with whom I'd attended Sixth Forum. He could clearly see I wasn't feeling well and asked me about it. Unfortunately I wouldn't be able to answer that question properly for another three months and made do with a simple, “Not very well...”.

    The week came and went with me dragging myself down the hill to the Biology Department every day and returning in the late afternoon; exhausted and feeling very ill indeed. My first doctors appointment was several days later and I was hopeful I that I might maybe get some answers, but I had no such luck.

    The doctor concluded it was likely a bad reaction to the vaccination and made worse by the antibiotics - to which I seemed to react badly. His advice? Rest! Certainly easier said than done for an undergraduate in the first weeks at university!

    I'd have loved to have sat down and rested until I felt better but unfortunately at the time I was not able to do so. The doctor also ordered a barrage of blood tests yet they all came back fine. As far as the doctor was concerned I was in perfect health! If only he knew how I really felt...

    Andrew continues his journey in a second and final installment, which we will publish in a couple of weeks time. But if you would also like to share your story - one that led to a positive diagnosis of CFS/ME - then please do get in touch:

    Like to share your own story?

    You can contact me (Firestormm) through the Forums (using our 'conversation' or PM feature) or send me an email outlining your proposal (

    Stories need not be as long, or in installments, as Andrews has been, but I do think that sharing them can help both inform others and raise awareness of our medical condition - and be a positive experience for the author.

    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

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    merylg, rosie26, MeSci and 1 other person like this.
  2. Marco

    Marco Grrrrrrr!

    Near Cognac, France
    Thanks for sharing part I of your story Andrew.

    It sounds like an archetypal example of a 'multi-hit' scenario - an exciting but also stressful period, something that ramps up the immune system whether it be a virus or a vaccine and then the antibiotics doing god knows what.

    Quite typical also that you carried on as best you could while knowing full well you were sick - after all few of us can just say 'stop the world etc' and who would want to even if we could?

    I had to laugh (sorry!) at your first night spent in your en-suite at the new digs - at least you didn't miss out totally on the whole fresher experience ;)

    All the best!
  3. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    thanks for sharing. I think more people need to be aware of the vaccination link to ME/CFS.

    In my case I dont know if vaccination played a part or not. I got ME/CFS while studying at Naturopathy Collage. At collage, I'd had an issue with my Hep B vaccines not taking so had this done far more times then normal as when they checked I wasnt producing antbodies to the vaccine. In the end I dont know if it ended up taking or not. Anyway.. I received a lot more vaccines of it, then most people get.

    I guess I'l never know if it played any part in my illness or not. (all I figure from that is there must of been something wrong with my immune system seeing I wasnt able to produce antibodies as people usually do).
  4. redrachel76

    redrachel76 Senior Member

    Thank you. I think getting ill while young is the hardest.
  5. SOC

    SOC Senior Member

    My daughter had a very similar experience -- a crash after pre-college vaccination boosters.

    We were fortunate(?!) to know something most patients with vaccine-triggered ME/CFS might not -- that although she appeared healthy at the time of the vaccination, she very likely already had ME/CFS.

    She and I had the same very sudden onset flu-like illness when she was 12 years old and I was, er, much older. She largely recovered, but had moderate crashes once or twice a year likely related to exposure to infections and/or high-threshold PENE. We would not have considered her chronically ill during that period if we weren't aware of ME/CFS.

    What made us knowledgeable was that I did not recover from that very sudden onset flu-like illness. I had better and worse periods, but I never got back to my pre-illness level of function. What we noticed was that while our daughter was largely in remission, when she did have these relapses, her symptoms were identical to mine -- not really typical flu. But without knowledge of ME/CFS, we might have attributed them to allergies and cold/flu plus depression or other pseudo-scientific claptrap.

    Once I was diagnosed by my GP ("There's nothing I can do for you.") and then by Drs Black and Lapp, we decided our daughter should be checked by specialists as well. In December, at the age of 17yo, she was diagnosed with ME/CFS currently in remission. In January, she got her pre-college boosters and went down hard. No recovering this time. No treatment was helping. She got worse and worse for the next year.

    The following January she started Valcyte treatment with Dr Lerner. We all believe that the live virus chicken pox vaccine (nothing like injecting a live herpesvirus into an ME/CFS patient for causing serious problems) reactivated her HHV6 and EBV since herpesviruses are known to activate each other. Now we know that ME/CFS patients should not have live virus vaccines as our immune systems are not able to control the virus effectively. Sadly, our GP assured us that there was absolutely no problem at all (yes, we asked) in giving our daughter, with an ME/CFS diagnosis, all those vaccine boosters. Thank goodness we knew enough not to give her the live HPV vaccine (Gardasil).

    So, our belief is that vaccines do not cause ME/CFS, but that they (especially live virus vaccines) can severely exacerbate an existing case of ME/CFS. Unfortunately, there may be many people unknowingly living with mild ME/CFS, just a single live-virus vaccine away from crashing into full-blown moderate-severe ME/CFS.

    The good news is that my daughter, 4 years later, is back in remission. She has not regained 100% of her pre-illness health, but lives a normal happy life. She is not able to keep common latent viruses suppressed and so remains in treatment. She has OI and thyroid issues probably related to infections or immune issues (autoimmunity?) related to ME/CFS. But she's fully functional and doesn't appear to have PEM. I'd take that at this point, if I could get it.

    What angers me is that so few of us get the kind of (relatively) prompt aggressive treatment that has given my daughter her life back. It's not a miracle, nor is it a cure, but I'm willing to bet that most of us would accept long-term treatment for chronic illness if we could work, raise our families, socialize with friends and otherwise live a relatively normal life.
    Little Bluestem and Valentijn like this.
  6. EMilo


    Seattle, WA
    The flu vaccination seems to be the thing that triggered my ME... Or it was the straw that broke the camel's back. I got all the boosters and immunisations I could get for years! I thought I was being so smart.

    @SOC, I am so sorry about your and your daughter's experience! What treatment did your daughter benefit from in the end?
  7. SOC

    SOC Senior Member

    Just to be clear -- we still get killed-virus vaccines -- preservative-free whenever possible. We are not opposed to vaccines, but we do take our specialists' advice to avoid live-virus vaccines.

    My daughter had almost 2 years of Valcyte, which was the biggest benefit by far. Dreadfully expensive, though. :( She continues to take Valtrex to keep HHV6 and EBV suppressed. She takes synthroid for pretty severe hypothyroid, and Florinef for low blood volume. Recently she started inosine to try to get her NK cell numbers up and help suppress EBV, which is getting to be a problem even with the Valtrex. She takes some vitamins/supplements recommended by our specialist. She also (on her own) takes a "green pill" which has lots of veggies, but probably most importantly, some medicinal mushroom extracts. It appears (no certainty) that this "green" product has improved her NK cell function from low to just-above-reference-range high in a year. Of course, that improvement might have just been some kind of normal healing thing -- who knows? :confused:
    EMilo likes this.
  8. Legendrew


    I sometimes look back and wonder whether I had something going on first, I can remember a particularly stressful event in the year prior where I felt very uneasy for a few days afterwards but It's so difficult to tell with these things. Having said that I managed my Duke of Edinburgh dilver award a year prior so i clearly wasn't in bad shape at that time.
  9. Legendrew


    Very interesting to hear your story and experiences, it seems very unusual for someone such as your daughter to get an ME/CFS diagnosis while still not unwell (in remission as you put it), certainly it's not something I've heard of before. From a personal opinion I believe there are likely many factors at play leading up to the sudden onset of symptoms; stress, vaccination and antibiotics seemingly to be my deadly trio. I wonder whether there is an autoimmune problem at the heart of the disease (something I like to explore a lot in my other articles).

    I'm glad to hear your daughter is doing well though, it's nice to hear a positive experience for once!
    SOC and EMilo like this.
  10. kisekishiawase

    kisekishiawase sad

    southeast asia
    ive heard about vaccine being a trigger but theres still something i dont fully understand. supposedly vaccine for healthy people with no immune problem are consider safe right? but some people wouldnt know if they have immune issues and that will put risk?
    however vaccine supposed to help avoid some disease which is a dillema, no vaccine means more prone to catch the disease.
    i 2as told by some alternative health practioner using device that some vaccines that i took causrd issues for me. but i dont know if its true. but theres some vaccine which is important to take such as hep b especially since im near someone who have it.

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