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.
Discuss the article on the Forums.

Childhood illness & ME/CFS ?

Discussion in 'General ME/CFS Discussion' started by Rebecca2z, Oct 26, 2015.

  1. Rebecca2z

    Rebecca2z Paradise, Ca

    Messages:
    248
    Likes:
    1,611
    Paradise Ca
    I was wondering if there are people with ME/CFS that as a child had Scarlet fever or Rheumatic fever ?

    Has there ever been any connections made ?

    When I was 6 years old I had Scarlet Fever which later became Rheumatic Fever.

    I was very very ill from this and I remember not responding to antibiotics. Shortly after that problem I got German Measles and was home bound for months. Are there any connections with ME/CFS and these childhood illnesses?
     
    Mackee and merylg like this.
  2. BurnA

    BurnA Senior Member

    Messages:
    2,086
    Likes:
    9,865
    Rebecca, I can't answer your questions but I was wondering how your ME/cfs developed or what was the onset ? Thanks
     
  3. Rebecca2z

    Rebecca2z Paradise, Ca

    Messages:
    248
    Likes:
    1,611
    Paradise Ca
    @BurnA, In the 80's ( I was in my late 20's) I was having a normal life like everyone else and all of a sudden I had some enlarged lymph nodes, one really large one under armpit. One node came back as cat scratch fever. Then came weight loss and severe sore throats. I had candida really bad in my mouth and throat. I could not take a shower without having to lay down for two days afterwards. ( this was the hardest thing to get used to - lifting a pencil meant having to lay down for hours after) Next was high fevers ( 102 ) and through all that I had some fatigue.

    But it was about 3 months later the profound fatigue began and massive thinking problems. I got in the wrong cars, forgot to remove clothing before shower. Got the mail once without a shirt on. ( this had to have been interesting to the neighbors) I got lost going to the video store I had been to for years. OMG it was crazy. I was freaking out and local docs didn't know what was going on. They sent me to UCLA and there I was DX with Chronic Epstein Barr Virus.

    ( a side note, just before this all came about I was a passenger in a car and was rear ended. I sustained a pretty bad neck injury- so was this a cause, I have often wondered)

    I remember all I kept saying over and over was "I am so tired, I could sleep for a year. " Well be careful what you ask for I slept for the next 10 years. I applied for disability and partly because the report came out on 20/20 I able to win my case.

    I learned how to live by prioritizing, but it took me years to figure that out. The whole thing is just awful, your going along having a great life and bam you go from 27 years old to 95 in just a matter of weeks.

    I used to tell people I have old age disease !

    Move forward 30 or so years and the whole thing starts up again only worse.

    Then the RTX and it's like a switch was turned off and I feel better.
     
    Last edited: Oct 26, 2015
    Jennifer J, Mackee, jimells and 4 others like this.
  4. Sidereal

    Sidereal Senior Member

    Messages:
    3,097
    Likes:
    17,189
    I had scarlet fever as a child and received a lot of antibiotics. Was never right since, though real problems only started years later.
     
  5. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,249
    Likes:
    29,384
    USA
    I did not have scarlet fever as a child but I had chronic un-ending tonsillitis where I was literally on antibiotics every other month (at that time either amoxycillin or erythromycin) which completely messed up my stomach for years. My parents did not want me to get my tonsils removed and it was tonsillitis at age 39 which led to me being given Levaquin which caused neurotoxic reaction which nearly ruptured my triceps tendon. And then severe mono at 41. So no scarlet fever (that I am aware of) but was constantly sick with tonsillitis and throat problems. Ironically since this illness (ME/CFS) or whatever it is began, I have never had another throat problem or fever in almost three years.
     
  6. Rebecca2z

    Rebecca2z Paradise, Ca

    Messages:
    248
    Likes:
    1,611
    Paradise Ca
    @Gingergrrl - that is so interesting how you haven't had any throat issues since the ME/CFS. Sounds like you still have your tonsils. I had mine and the adenoids removed as a child. Like you I do think I was on way too many antibiotics for many years.
     
    Last edited: Oct 26, 2015
    Mackee, Gingergrrl and merylg like this.
  7. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,249
    Likes:
    29,384
    USA
    Yes I still have my tonsils and much to dangerous to remove them at this point plus since this illness started in 2013, I have not had any tonsil or throat issues. But as a child, I was on way too many antibiotics but we did not know any better at that time.
     
    Mackee, merylg and Rebecca2z like this.
  8. Sea

    Sea Senior Member

    Messages:
    1,283
    Likes:
    2,714
    NSW Australia
    I don't have any evidence, but my thinking is that the link between the two is that those who experience a lot of childhood sickness have in some way a less robust immune system, and that it is that problem which predisposes to ME/CFS.

    Personally I have had chicken pox 3 times and measles twice. Among my fully immunised children one has had whooping cough, one chicken pox and one measles
     
    Rebecca2z likes this.
  9. Kina

    Kina

    Messages:
    10,132
    Likes:
    17,225
    Sofa, UK
    I had an undiagnosed either bacterial/infection at age seven in the sixties. I spent the whole summer in bed. The symptoms were very much like ME with the added bonus of huge nosebleeds all the times. I often think that might have had something to do with my later state of health.
     
    Mackee and Rebecca2z like this.
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,249
    Likes:
    29,384
    USA
    @Sea, that is so interesting and I never caught anything that I was immunized against (never had measles, mumps, whooping cough, etc) but I did have a very mild case of chicken pox at age 11 (there was no vaccine for it back in the 80's.)

    So even though I had mild chicken pox one time in the early 80's, and never had shingles, I am IgM positive for VZV (now) which seems so bizarre to me!
     
    Mackee, Rebecca2z and Sea like this.
  11. IreneF

    IreneF Senior Member

    Messages:
    1,552
    Likes:
    2,568
    San Francisco
    I had strep throats as a child, treated with penicillin injections. (Ow.) Tonsils out at seven. After that I was fairly healthy. I had mono for about a month when I was 16. I was healthy as an adult.

    My husband also had strep throats, penicillin, and tonsillectomy. He doesn't have cfs/me.

    So I think the connection is somewhat tenuous. We really have to remember that correlation does not imply causation.
     
    Mackee and Rebecca2z like this.
  12. Tammy

    Tammy Senior Member

    Messages:
    1,117
    Likes:
    1,502
    New Mexico
    And then there are the exceptions like me who never had ANY of the childhood diseases. The only thing I had a lot of though was TONS of fever blisters growing up that were so bad it looked like I had cancer of the mouth.
     
    Mackee and Rebecca2z like this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    10,249
    Likes:
    29,384
    USA
    I should clarify my original post that when I had unending tonsillitis as a child, it was often strep throat and other times not strep and just an unknown infection.

    The infection at age 39 which I was given Levaquin came back twice as negative for strep (even though ENT was certain it was strep) and he finally told me it was H. Influenzae (sp?) but think he was just guessing and I will never know what it was.
     
    Mackee, merylg and Rebecca2z like this.
  14. alex3619

    alex3619 Senior Member

    Messages:
    12,654
    Likes:
    35,758
    Logan, Queensland, Australia
    According to the Dubbo studies the strongest predictor of ME/CFS (I would not say they used an ME definition) is severity of infection. Any infection that can knock you down for a long time might be a risk factor.

    I never had either of those two diseases but I did get measles encephalitis, or measles in the brain, at age 7. I have long wondered if a virus crossing the blood brain barrier might set you up for ME at some point in the future, if not immediately.
     
    Mackee, Sea, merylg and 1 other person like this.
  15. Rebecca2z

    Rebecca2z Paradise, Ca

    Messages:
    248
    Likes:
    1,611
    Paradise Ca
    @alex3619 - thank you and I agree it would seem logical that a virus crossing blood brain barrier would or could set a person up for ME. ...sadly it also seems this is why we can't get answers -
     
    Mackee likes this.
  16. digital dog

    digital dog Senior Member

    Messages:
    613
    Likes:
    944
    Or perhaps it was the antibiotics we were given when ill that predisposed us to ME. Perhaps there is more to the 'immunity starts in the gut' theory?

    I was fighting fit as a child although I did get coldsores frequently and then I took a lot of antibiotics for my skin (vanity!!!) and after a couple of very nasty food poisoning episodes I went downhill.

    Glad Rituximab helped you. I didn't think it was available yet.
     
    Mackee and Rebecca2z like this.
  17. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,358
    Likes:
    4,463
    London
    I was lucky and had a very healthy childhood. All of my siblings were well and healthy. We had the normal childhood diseases with no complications. Our GP said we were a very healthy family.

    My father had a very bad spell though when my brother went to school at 5 and brought home measles etc. He had a severe adult case and was sick for a long time after that.

    Although the extended family was very allergic to different things and had asthma this didn't strike me until the ME started as a severe unknown acute virus. My other siblings never developed the family allergies.
     
    Mackee likes this.
  18. Snookum96

    Snookum96 Senior Member

    Messages:
    290
    Likes:
    552
    Ontario, Canada
    I had roseola at 11 months that caused seizures but I think that's it. I had chickenpox as a kid but nothing out of the ordinary.
     
    Rebecca2z likes this.
  19. Debbie23

    Debbie23 Senior Member

    Messages:
    137
    Likes:
    293
    I didn't have scarlet fever or rheumatic fever either, but I was a sickly child right from being a baby; we think there are reasons which means this makes sense due to environmental exposure to serious chemicals both before and after i was born. But while I can see a definitive point where my health shifted to ME, I had a long list of childhood illness both before and after that point.

    I had measles and chicken pox, very close together before I was one. I can't remember if I'm right, or if this is even possible, but my mum might have even said I had both together. But I was very ill, and again this was before I was one.

    Recurrent ENT infections, some really bad and I came close to needing grommets. Asthma and chest infections frequently, if I got a cold or flu you could guarantee my chest would flair up. Regularly got colds, viruses, flu, bugs etc. I'm one of those for whole this has continued after my ME. I still get stuff very easily, just struggle to get rid of it and my ME gets worse when I get something like this. Like other people I had something aged seven which definitely kick started my ME from around this time. I was ill before but the way I was ill shifted to fitting ME definitely in a way I don't think I did before.

    Periods started at nine, very ill from the off, diagnosed with endometriosis at 12 by a specialist who said this was why i had been so ill from the start, definite correlation between periods and my ME. Had a laparoscopy at 14 to treat this, said 13 on a thread ages ago, but realised my maths was slightly out with that not long ago! It was this that led to me crashing and finally getting diagnosed with ME following a bad reaction to the general anaesthetic. I had ME before that point in hindsight, but this is what led to diagnosis literally a month after this surgery as I just crashed so hard. GA always causes a crash for me. I was also put on hormone treatments for it some of which were really nasty with side effects, and I don't think this helped at all. But I credit the GA for the initial crash because in the two times since then I've had it it always causes a long term lasting crash and tbh I think has even lowered baseline perhaps permanently.

    Migraines and abdominal migraines as a child, including light sensitivity, gastric issues, sleeping all day unable to wake up. Looking back I do wonder if this was an aspect of ME back then rather than something standalone in its own right if that makes sense.

    And various skin issues. My skin kind of 'explodes' sometimes and struggles to get rid of infection. I had to have a toenail removed when I was first ill because it got infected and my body was just refusing to fight the infection at all, it just kept getting worse. Had to have a little sterile surgical field set up at home because I was too ill to go to a clinic or hospital. But since then acne, boils, cold sores Even sometimes on my hands, impetigo and infections etc.

    Gosh, sorry that was long! But yeah, loooong history of illness even before I was 'ill', but some issues continuing after my ME as well, endo, skin problems, asthma etc. I also often get my sinuses flaring up, and earache along with the sore throats and swollen glands during PEM; I can feel like I have a head cold etc. even when I haven't.

    It's interesting other people remember a point of illness around seven years of age. That's when I swear my ME started following an especially bad patch of illness, my dad had the same thing and struggled to shift it too, and while his ME is somewhat different to mine sometimes, he is the only one in our immediate family (touch wood) who has it too.
     
    Jennifer J, Mackee, Rebecca2z and 2 others like this.
  20. ahmo

    ahmo Senior Member

    Messages:
    4,382
    Likes:
    6,643
    Northcoast NSW, Australia
    I had some sort of illness around puberty, w/ high fevers (delirium), and ulcers in my mouth. It was labelled stomatitis, which I thought was a generic label for these ulcers, although I've seen the term recently suggesting it's a real entity. I received antibiotic injection at that time, very unusual, maybe oral as well, I'm unsure.

    I've wondered how close this was to an oral polio vaccine. No way of finding out now, but possible. Following this, within a year or 2, I lost my thyroid function. The rest of my antibiotic history is pretty much only for dental issues.
     
    Mackee and Rebecca2z like this.

See more popular forum discussions.

Share This Page