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Early stages of M.E

Discussion in 'General ME/CFS Discussion' started by Katyw, Feb 10, 2014.

  1. Katyw

    Katyw

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    Hi there

    I'm new to this forum having only recently been diagnosed with M.E. I have been severely ill for 6 months with many (if not all) of the symptoms fitting the Canadian Criteria of diagnosis.

    I just wanted to get some advice on a couple of things.

    Firstly, I have been following a high vitamin C therapy protocol for the last 2 and a half months which I feel is helping me. My nutritionist has recommended a new supplement -Humic Acid which she believes is helping some people with M.E especially those with assumed viral infections. My concern is that at the moment I am doing OK so I don't want to ruin this but also I've read that this supplement boosts your immune system. If M.E is an autoimmune disease then this could be problematic. Does anyone agree? Furthermore, my blood tests for the last five months have shown high levels of white blood cells, ESR and CRP which I think means that I am fighting off a infection which would assume an active immune system.

    What do people think?

    I've read about the importance of treatment in M.E in the early stages as well as complete rest, which I am doing (with difficulty).

    Thanks in advance :)
    K
  2. lnester7

    lnester7 Seven

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    Get somebody that knows what they are doing so you have a good chance of best treatment. What country are you in?
  3. minkeygirl

    minkeygirl Senior Member

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    You mentioned assumed viruses. What labs? Many of us do well on antivirals. But @Inester7 is correct. Get to a doc as soon as you can.
    Star-Anise, Katyw and justy like this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    taniaaust1, Katyw, justy and 2 others like this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    While high levels of Vit C may help you, if your diagnosis is correct, you likely have some viral and/or bacterial infections and Vit C is probably not a big enough bullet.

    I agree, get to the best ME specialist you can find and afford and get testing and appropriate treatment for what the testing reveals.

    Best wishes,
    Sushi
  6. Katyw

    Katyw

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    Hi

    Thank you all so much for your quick replies :)

    Sorry, I should have made it clear in my original post, I live in the UK so testing and finding a decent doctor is very difficult! Hence why I've had to take things into my own hands and try different things.

    I have a reasonably good GP who has been willing to do some tests but is clueless about M.E. I also went to A&E early on with the hope of getting some help as I felt so bad and they luckily sent me to the infectious diseases department. The tests I have also had done so far are apart from in original post are:

    EBV
    CMV
    Lymes
    Toxoplasma
    Hepatitis
    Full blood count
    Thyroid function (not specific one though)
    Liver function (was high)

    Do you think its likely that I have a viral infection? The only ones left could be HHV6 or Enterovirus.

    I read that high CRP and lymphocytes are common in early stages of M.E.

    Thanks
    K
  7. Katyw

    Katyw

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    Sorry, forgot to add on that list of what I've had tested:

    Lupus
    Chlamydia pneumoniae infection

    Also, I think its near on impossible to get a stomach biopsy for an enterovirus in this country! I'm struggling just to get referred to a gastro specialist.

    Thanks again
    K
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Katyw are lymphocytes above normal range?
    Infection testing that tells us its a current infection are just inaccurate. I would be tempted to treat the toxoplasmosis with antibiotics and antivirals for viral infection. If u improve u know its an issues, probably the only real way we have of knowing infections ate current.

    Just my opinion. Being in the uk makes it even harder. No chance u can pinch a loaf of bread and become a convict and shipped to australia??
    peggy-sue likes this.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    There is research showing famvir had activity against hepatitis. Abx for cpn and try equilibrant for possible enterovirus? ?
  10. Katyw

    Katyw

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    Heapsreal- Ha Ha, I would definitely loved to be shipped to Oz, might have to consider a new career in thievery! ;)

    Yes my lymphocytes were higher than normal. But I was tested negative for toxoplasmosis. I also had two weeks of antibiotics (doxycycline)at the start of of my illness and they did nothing.

    Good idea about the famvir. I also think I should try some anti viral medication as this might work. My dilemma is how to get this prescribed!!!

    I have done a fair bit of research into doctors who can help in UK and there looks to be three possible options:

    I have got appt with an NHS doctor at the end of March. She specialises in orthostatic intolerance and POTS which I have got. Im confident she will help in that area but I'm not confident she will prescribe a good treatment plan overall for M.E.

    Secondly, I am sending off my bloods to Dr Myhill who looks at the mitochondrial aspect of this illness. I think her treatment plan looks good.

    Lastly, the only other doctor I've heard of is Dr William Weir who is based in London. This is private so I'm saving money for that. He MAY prescribe anti vitals but I'm just guessing.

    Otherwise, looks like I'm on my own :( for a while anyway. that's why I was considering Humic Acid but I'm not sure.

    I also read that high dose probiotic could help with enteoviruses, this I can get and start immediately.

    What are your thoughts

    K

  11. Katyw

    Katyw

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    Hi again

    Regarding the UK doctors mentioned in my last post does anyone have any experience using them?

    K
  12. Alexandru Matei

    Alexandru Matei

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    M.E is not an autoimmune disease, it's an infectious disease by all means, along with many genetic issues and high levels of toxins in the body.
  13. Katyw

    Katyw

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    I didn't actually say it was an autoimmune disease. I did only hypothesise! I'm quite aware that M.E is an infectious neurological disease initiated by a chronic viral infection. But it has also been clearly associated with injury to the immune system. Professor Malcolm Hooper has stated:
    • there is evidence that Myalgic Encephalomyelitis is a complex, serious multi-system autoimmune disorder (in Belgium, the disorder has now been placed between multiple sclerosis and Lupus)
    • there is evidence that the immune system is chronically activated (eg. the CD4:CD8 ratio may be grossly elevated)
    Taken from: The medical facts section of www.hfme.org
    taniaaust1 likes this.
  14. Alexandru Matei

    Alexandru Matei

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    There is evidence that both Lupus and multiple sclerosis are infectious in their nature.

    I am not a doctor and it's hard to say what causes ME/CFS (not even doctors are able to) simply because this illness shares symptoms with over 300 other diseases, no doctor would test you for the whole panel of pathogens, and no one would ever possibly be able to tell which pathogen is causing ME.

    I personally don't believe in such thing as autoimmune disorders. (just my opinion)
  15. Katyw

    Katyw

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    I respect your opinion. There is no conclusive evidence to say what exact pathogen causes M.E that's why it's so hard to treat. We just have to try things and if they work, all the better!

    I was just unsure whether to try some anti viral supplements suggested to me.

    K




  16. philpot

    philpot

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    I also reside in the UK Katyw and for the most part the doctors just run through the routine tests to eliminate the things they know about. That is of course positive because then we are left with less to find out about however when they cannot really give a proper diagnosis it's somewhat hard because we have something which is physically and emotionally distressing and yet we cannot explain it to others or else get proper help for it; hence you became your own doctor.

    Most of the doctors thereafter are not too interested because they have a budget and a hard to diagnose person can drain that budget and thus not leave to much for the other patients, who of course equally deserve their treatment.

    My take on ME and from objectively monitoring myself from many years ago when I had a first slight muscle cramp was that it is initially caused by a virus and which the body never completely shakes off, so to speak. Yes of course high stress is going to affect people and lower resistance to things but the fact remains that many people have gut issues, high stress, viruses, etc., but do not go onto develop ME.

    I often read stories about people who, for example, have had their leg amputated but still get pains in their foot and yet their brain quite clearly knows there is no leg or foot in one part of it but still thinks there is a leg and foot in another part of it.

    The brain is one complicated and finely tuned piece of whateve we wish to call it. The brain mainly evolved to control muscles and that is it's main job and which it does subconsciously for the most part, involved in that of course is operating all those muscles in the right time and ensuring they have the energy etc., to do it at the right time.

    This is a heck of a lot of coordination which needs to be done; it's a complicated system. The system may not be damaged enough to be detected by the usual tests but I tend to feel those tests are looking for damage rather than interference and that is the issue. It's rather like looking at society and running a test to find out of 10,000 people have died in a town and then saying 'oh yes 10,000 people have died there is a problem', it's easy. However it could be that those 10,000 people were not all functioning as well as they could do and so overall developed symptoms such as more local fights, shops ran out of some products, more car crashes, one of the schools started performing badly etc., and instead of it being because they were all dead, which of course is nonsense, it was instead because actually their communications, daily routines, connections, etc., were slightly disturbed and over a period of time.

    Now what test would we do to be able to detect this interference, I ask myself, because that would be one complicated and expensive test. From my own observations I believe the body has a virus and this causes the immune system to go slightly off balance and this starts to interfere with the brains normal processes, not causing significant damage which can be easly detected but just increasingly interfering with them. Interfere with any complex system for long enough and eventually other things will start to show up, but then diagnosing the cause becomes increasingly difficult because now we are in a mess of things with many variables.

    We all tend to carry a range of other things and so of course people start to say well it could be this and it could be that and we all add in our different this's and that's and before we know it we have introduced our own 1000's of variables and which makes it more confusing. I personally had a two week period where everyone of my symptoms switched off so to speak, I went to bed one evening feeling sh$te and then the next day I woke up like a different person and two weeks later I picked up a significant cold and then it switched on again, and significantly worse.

    People in these forums are really all looking for the same thing, a fix, and/or hope of a fix. We are all trying different things and sharing our experiences in the hope one of us finds something which works and can then be applied for all of us. Doctors cannot put the immune system back into sync, if they could then of course they could cure a range of other illnesses.

    In my opinion most of the other stuff they are doing is also just trying various things and in my opinion if we see enough people then we are going to have some success. I do however tend to think we the people are going to find the solution rather than medical science who for the most part do not have the resources for it.

    I know people with gut problems who do not have ME and I know people who pick up colds and flu with ease and no ME and I know people with high stress jobs with no ME and I know people who have had more sexual diseases than I care to mention who have no ME, in fact I know some people. :)

    In my opinion and unless a person has a specific detectable condition then we have to concentrate on trying different things in order to disturb the complex system and hope that we find a way to kick it back into sync, but in doing this we need to be careful not to do so many things at once we did then do not know which one worked.

    I also think that pleasure, laughter, positivity, etc., need to be in there as well because these are things we either neglect when we are ill or else we find extremely difficult to do. One thing I do remember is that the day before my issue switched off I went out for an Italian meal with a very attractive young lady and with whom I was very fond of and we had a brilliant meal and talk etc., and it's hard to explain how good that evening was. I did not go out and pretend to be happy etc., I just was.

    I have since thought about the meal I had etc., and other things I was doing days before to see if there was something else which may have been different to what I was normally doing, but no nothing. May have been just luck and not in anyway connected to that evening out, who knows, but unfortunately I do not have the same fondness of her today and so cannot really get to that emotional zone again to retry the experience and see if it would help.

    I personally am not a doctor but I am a complex systems person and so I think we have to try to find a way to fix one or two of the key parts of the system such that the rest of our complex self healing system can fix the rest, because no doctor is ever going to clever enough to address all the issues. Keep talking and hopefully one of us will one day find the solution. Regards.
  17. justy

    justy Senior Member

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    @philpot would you mind breaking your text up into smaller paragraphs as it's too difficult to read in one large chunk, and I would like to read it.

    Thanks,
    Justine
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    There is increasing evidence for ME being autoimmune. I'd recommend reading some of the Phoenix Rising articles about evidence and theories for the basis of ME.

    I would particularly recommend the ones summarised here with links to them.
    peggy-sue and Katyw like this.
  19. philpot

    philpot

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    Thanks for that link. I conclude from my own research that there is of course not enough research. :( Of course I have to accept the possibility that my own condition was caused by something else other than a virus, it's possible, and so I maintain that objectivity.

    However, even though my post above is quite long it is a fraction of what it could be, because I maintained a record of my life, progress, various symptoms etc., in order to maintain a reasonably objective approach. So when I went to see my doctor I had the tests done that I wanted and in a logical way, in agreement with the doctor of course.

    Brain scans completely clear, blood tests again completely clear and muscle and nerve tests completely clear etc. Hence we arrived in the position of 'we cannot diagnose you', it's more likely to be ME. I will not list all the symptoms because I have read many of them on these forums and hence why I arrived here.

    Call me a sad person but I maintained records and I know that in my case there was a very significant flu virus, a friend was in hospital for 5 days with it, and since that time I started to have runny nose even when I had no cold and then every 6 - 9 months I would get the same pattern of cold like symptoms which then went around my body in the same pattern each time.

    Later on these progressed to slight leg muscle cramp after 20 minutes of excercising, doing an excercise which I normally did every day for 60 minutes with no issue. Then came a slight coordination issue with the hands when trying to paint straight lines. Then we progressed onto slight balance issues, then slight vision issues and then these became increasingly worse etc.

    I do recall some stressfull periods in my life during this time as well, but the symptoms did not seem to get worse or else change in pattern or frequency during those times.

    I went to see my doctor right from the first flu and then at significant points thereafter and each time updating his record, so I am quite sure he was not liking all the notes he had to keep. :) If we look at other viruses, infected people always carry the Herpes virus but it is only every so often it creates external symptoms, most of the time it is dormant because the immune system suppreses it but then it starts reproducing symptoms appear.

    So what goes wrong, why does the immune system not keep this virus suppressed all the time? Does the person carrying the Herpes virus when it is dormant consciously know about it? Of course not because it's sleeping, but it would seem it is both there and the immune system knows about it. If we take the flu virus then as we all know within 24 hours a person can be on their back and with all manner of symptoms.

    I conclude in my case that the immune system is not functioning at 100% and it is increasingly interfering with the brains processes. However, I think like everyone else I will keep trying my own changes and also continue with the doctors visits and hope to find something which provides a solution.

    Regards.
  20. Katyw

    Katyw

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    Hi philpott

    This is one of the main problems with diagnosing M.E in the UK. They solely base their diagnostics on if there's nothing else then it must be M.E! Or, if you've been tired for 6 months it must be M.E! There are objective methods of testing for M.E which aren't used in this country. i.e Spect/PET scans, Romberg test, exercise testing, 24hr holter monitor etc. Many top M.E specialists use these methods to diagnose properly. People with M.E usually have abnormalities in these areas.

    I'm curious, you mentioned you lived in the UK- and you managed to get brain scans-is that correct?! Also, because we don't have great specialists to help us test for M.E then we are largely dependant on the next best thing, which is seeing if our symptoms for fit in with the international consensus criteria (ICC) for ME. The compulsory symptom being PENE-post extertional neuroimmune exhaustion. The inability to produce sufficient energy on demand.

    K
    peggy-sue likes this.

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