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Question to some of the "old timers" and anyone else...

Discussion in 'General ME/CFS Discussion' started by Thomas, Aug 28, 2013.

  1. Thomas

    Thomas

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    I'm new here. Been sick with ME for 22 months after a flu shot gone wrong...very wrong. Anyways, Dr. Hyde told me that most of his flu shot induced victims of ME seem to improve over time. The HepB vaccine ones present with a more severe form of ME. Well it has been 22 months and I guess i have improved in some ways but the overall trend has been down, not up. Perhaps its just the cyclical nature of the illness, but I am beginning to think his statement was just lip service. I can still work a few hours a day and socialize if i need to, but it is gruelling and becoming increasingly difficult. Anyways...

    For those of you who have been around a while and seen alot of what ME brings to the table in terms of differences in people, genders, symptoms, onsets, body type, age, years of illness etc Do you see a pattern or "type" of person who fairs better than others? Both physically and mentally. Are there certain symptoms that scream progressive disease and others not? Do the skinny hypermobile type people like me do worse overall? Or can we improve also. What about time frame for illness. If one is lucky enough to improve does it take many years? And is that road a bumpy one? Meaning, its not steady improvement but a cyclical one.

    Of course specific treatments can answer this but i was just wondering in general...

    Anyways, just curious as I am still at that desperate to recover or substantially improve stage.

    Best,

    T
  2. Sea

    Sea Senior Member

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    I don't know about different types of people or pathways into the illness, but I do know that those with the best chance of recovery are those who are diagnosed early and who don't push themselves
    taniaaust1 likes this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thomas

    Complicated questions and many of the answers are unknown.

    But, I agree with Sea --early treatment and staying within your energy limitations are very important. Your use of the word gruelling probably means that you are trying to do too much.

    As far as:
    Skinny could be from the illness or your metabolism. Hypermobile is likely EDS. I think that early and good treatment is much more important than certain characteristics such as these. Hypermobility could predispose you to certain problems but taking those into consideraton in terms of life-style and treatment could limit their importance in terms of "getting well."

    I am hypermobile and somewhat skinny but don't think that has been much of a factor in improving. There isn't really a time-frame (too individual) but the faster you can find out what exactly is wrong (pathogens, toxins, gut function, immune function etc.) the faster you can take on treating things.

    "Years" is likely unless you quickly find a central problem and treat it. (it is more often a combination of problems and thus more complex treatment) Yes, bumpy! :( Usually ups and downs.

    Best wishes,
    Sushi
  4. SOC

    SOC Moderator and Senior Member

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    Let me add a bit to that...
    "those with the best chance of recovery are those who are diagnosed and treated early and who don't push themselves."
    ahimsa, Beyond and taniaaust1 like this.
  5. Thomas

    Thomas

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    Thank you Sushi. I have been reading your posts for quite some time, you are like an ME celebrity (that's a complement by the way haha). Honoured to converse with you. And i think your reply was very informative and helpful. In terms of doing too much perhaps i did. But i also rested.

    I may write an essay called: what not to do during your first 2 years of illness. That is, move apartments twice, stress yourself out, try experimental treatments that make you worse, work too hard, start a new relationship with an energetic girl, take on a new condo reno, and have a mold exposure. yup, all things i did. But i am still standing!

    Yes SOC i would agree with that too. Unless they are the wrong treatments for some like gcmaf and a fecal transplant.
    Sparrowhawk, taniaaust1 and SOC like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    I cant give an answer to that as I dont know anyone who got sick from a flu shot, the ones who get it from a Hep B injection, i do know that many of those have remained sick.

    I agree with what the others said, if something is "gruelling" it would probably mean you are doing too much. Even if you are staying within good limits most of the time, even occassional gruelling things could keep you sick.

    Gender. I'd say 3/4 are female (going by ME/CFS websites you wil see most are). In the children group, it affects both sexes equally.

    Onsets. Those who have a more severe triggering illness are more likely to get ME but possibly too more severe ME. eg there seems to be a relationship with the worst the EBV.

    Body Type doesnt seem to matter thou those who have EDS (stretchy people) must have a higher risk as there does seem to be a link between those things.

    Age. It can affect any age.. probably more common thou in adults (I wonder what part female hormones play into things)

    Recovery: The less long you've had this illness, the more change you have of recovery. Those who have had it less then 2 years may recover, after that, from what Ive seen most dont completely recover. (hence why trying to treat it and having good pacing and not overdoing it, is the most important in the first year or two).

    Those who are strong mentally, probably do do better some with this illness as stress can affect things and health. Negative thinking can impact things some.

    " Do you see a pattern or "type" of person who fairs better than others?"

    No I havent noticed one except if one has been defined using poor CFS definations in which case it is far more likely the person has been wrongly diagnosed and recover. There is so much variation with the illness even in individuals who may be going very well at some point and seen to be getting better but then something goes wrong and suddenly they are a lot worst. My own illness has been highly variable with completely different symptom complexes coming in at times.

    "Are there certain symptoms that scream progressive disease and others not?"

    Ive been near the sickest one can be with this illness and later underwent a remission for a few years. Unless one has symptoms in which are known to be permanent and damaging, one cant know by symptoms

    " If one is lucky enough to improve does it take many years? "

    Improvement is tricky, to improve one needs to be doing the things needed to improve and that is different with everyone. Finding things to help bring on improvement are very hit or miss, always best to to look at rate of risk of making one worst when considering what to try. (I myself dont think I'd try GcMAF but Id actually try that cancer drug which kills B cells). Each case is different and you really need to weigh up what has helped or harmed more ones similar to your own case.
  7. taniaaust1

    taniaaust1 Senior Member

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    This probably not needs to be said but I'll say it just in case some doctor tries to convince you otherwise. I suggest never getting another flu shot nor a Hep B vaccine in your case. Seeing that triggered you off into this, you will always be suspectable to that trigger even if you ever do recover.

    You may also want to consider avoidance of other well known ME/CFS triggers eg chemicals.
  8. Thomas

    Thomas

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    Thank you taniaaust1 and to answer your question i wouldnt get another vaccination if there were a suitcase filled with a million dollars in it waiting for me after.
  9. xchocoholic

    xchocoholic Senior Member

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    I'm an old timer. ; )

    I got sick in 1990. Sudden inset. Appeared to have been virus that affected mainly my lungs. BUT
    I was also given several rounds of antibiotics for chronic thick green mucous that may have been flouroquinolones. My body
    went into spasm very quickly and didn't recover. In Jan 2013, I had a bad reaction to flouroquinolone since
    I didn't know I couldn't handle these. My knees have mostly recovered but my shoulders are still out.

    I made substantial improvements after changing my diet in 2005 to a food intolerance free diet. I get
    Neurological problems from gluten. I'm a celiac too tho. I was skinny too. And for 15 years I went thru bouts of looking grey and jaundice. I haven't done this since changing my diet tho.

    I still have orthostatic intolerance (hypotension and pots) tho so my improvement is impossible to measure.

    Thought my story may give you some hope. Tc .. X

    Ps. I'm currently treating for parasites and hope to see more improvements. My stool tests are positive. Yuck !
  10. xks201

    xks201 Senior Member

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    I've seen vaccines destroy the pituitary. My guess is something similar could be going on in ME.
  11. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    They do something more than that.

    http://www.medical-hypotheses.com/article/S0306-9877(08)00493-3/abstract

    http://link.springer.com/chapter/10.1007/978-94-010-0167-0_16

    http://www.sciencedirect.com/science/article/pii/S1568997208001390

    And here, scientifically proven, how our friend ALUMINUM makes its way to the brain when injected in the body:

    http://www.biomedcentral.com/1741-7015/11/99

    Cannot get any clearer than that.

    But that is just one facet of the marvelous vaccines, every single thing in them is bad and disrupts the body system.
  12. Suella

    Suella

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    Thomas,
    Your recovery will be very much influenced by what you do to support your body. I wasn't diagnosed for 3-4 years and in that time managed to push-crash and damage my metabolism.

    It is very difficult to improve with ME/CFS until you understand all the various phases and factors of the illness. I have improved greatly though using the protocols of the on-line ME/CFS course of Bruce Campbell which is supported by Dr. Charles Lapp of the Hunter Hopkins Clinic. I am greatly improved back to college part time and have rebuilt a satisfying life.I now have a very good understanding of how I can support my body though careful, safe activity, and in-activity

    There is an intake starting this next week and you may be able to get on it. If not then after Xmas. The course is extremely inexpensive with a free great textbook. It is an on-line discussion course with free life-time support.
    Have a look at www.cfidsselfhelp.org Lectures on you tube are free and open to us all as are the dozens of library articles.
    Suella
    taniaaust1 likes this.
  13. Thomas

    Thomas

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    Thanks xchocoholic any stories of improvement certainly give me hope. I also hope you continue to make progress and that this parasite treatment will bring you some more relief.

    T
    xchocoholic likes this.
  14. Thomas

    Thomas

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    Thank you Suella. I am in somewhat of a push crash cycle but not fully. Honestly though i must get up every morning and handle life as best as i can which some would consider a push, and i cant just constantly rest as I do not have the time, and i also feel that constant rest promotes deterioration in some respects. I am so happy you have improved and I hope I can too. Thank you for the advice.

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