1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

The Undetectable Infection

Discussion in 'General ME/CFS Discussion' started by Elph68, Nov 30, 2013.

  1. globalpilot

    globalpilot Senior Member

    Messages:
    592
    Likes:
    209
    Ontario
    That's the point of posting the papers. So, they, and not opinions can be discussed.

    It's not about whether anybody believes you are not and it shouldn't be. It's about what the science says. So please share your theory with the papers and any who are interested can decide if it applies to them or not.
    aimossy likes this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    i dont understand this, are u playing with our heads then. wanting us to go after you?

    If u have all the money u say u have then u have alot more means of getting tests etc etc most of us dont have the money to get alot of testing and treatments u say. If your as rich as u say you are and want to prove a point then put your money towards some type of research study.

    The way you write your posts it feels like your just on here shit stirring, giving very little proof and then bag anyone who doesnt understand or believe you.

    You still dont get it why people are cautious of someone saying they have the answer, because many before you have come out saying they know the answer to cfs and fallen on their face or into a sub group. Are we suppose to drop everything and start following you like some god, thats what it seems like you want.

    We tread with caution, we arent going to follow someone blindly and we want some type of proof. Always cautious of someone who says they know it all, because know one does.
    lansbergen, SOC, MeSci and 1 other person like this.
  3. aimossy

    aimossy Senior Member

    Messages:
    2,082
    Likes:
    2,543
    NZ
    LOL! rhino!
    So Elph ,
    I would like to see some of your research info but anyway.
    Which bacteria come back exactly test wise in you and these others?Is it just the ones you have sort of mentioned.
    I need that laid out real simple like im completely thick because of my stupid cognitive issues....and I will look into it all a bit more myself as I am able.
    How much is the bioscreen what does that actually involve/get looked at. is it stool?
    can I get that test done from here in NZ.?

    :)
    MeSci likes this.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    How does bioscreen help if its undetectable, im confused?
  5. aimossy

    aimossy Senior Member

    Messages:
    2,082
    Likes:
    2,543
    NZ
    levels maybe? overpopulation maybe? Need to know specifics of those tests @heapsreal .
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,577
    Likes:
    4,198
    Cornwall, UK
    OK, some more constructive input. This is how science works. Scientists discuss things with each other, point out possible problems, build on each other's work, etc.

    One thing of concern is that you may be overdoing things right now from what you are saying here. People who have not been ill for long have the best chance of recovery - and sometimes without treatment, but it is all-too-common for people to mistake a remission for a recovery, overexert themselves and end up worse than before, often much worse. Whatever treatment (or none) that we try, it is essential to pace and rest. That's something many of us have learned the hard way.

    You say that all the CFS/FM people you have 'sent' (by mail or under armed guard? :lol:) for tests have the same bugs in their guts. I think you have also said that these are 'normal' bugs. Does the test differentiate between normal bugs and pathogenic ones of the same species? And would a control group of healthy people have the same results? If so, it is no more significant than observing that all the people you know with CFS/FM have two arms and two legs each.

    It is not true at all to say that science has got nowhere. It is advancing apace, and some lines of research are sufficiently well-developed for patients to start treating themselves (e.g. the leaky-gut threads I have linked to) and others (e.g. rituximab) are in clinical trial. I have the impression that you have not been reading the science on here.
    SOC, aimossy and heapsreal like this.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,246
    Likes:
    4,570
    australia (brisbane)
    @MeSci i agree i dont think he has read much of the cfs research as it tells in many of his replies. He says that staph stops us from producing nk cells, we know by the science produced in cfs/me that we dont have a problem with producing nk cells, we have plenty of nk cells, they just dont work.

    Im not saying im cured but if its staph then how does antivirals improve someone with a bacterial infection? How do others with cfs improved through other treatments. Some have tested positive for entroviruses and have improved treating this. Others with ampligen, some with abx to treat mycoplasma and others treating chlamydia pneumonia. I think this shows there is more then one infection involved in cfs/me and at this stage sub grouping is important to help get the right treatment.

    Early threads it sounds like he got an STD but if you read up on cfs/me many start with some type of viral infection, cold/flu, respiratory infection, glandular fever, enterovirus and a minority have said after a sexual encounter, many of us cant relate a sexual encounter to the onset of cfs/me, not that it doesnt happen but its not something that happens with every cfs/me person which is how he is trying to portray things.

    There is just too much conflicting info, he mentions its undetectable but now he's suggesting to get tested at bioscreen, how does that help, maybe he's getting a cut of it. Even if we do this test, then we explain to our doctor that we require antibiotics for this infections for bacteria that everyone has in their gut. Come on, we need more then this, explains why one would get laughed at going to a doctor with this.

    Maybe he has improved on the cocktail of abx because he has a mycoplasma infection or chlamydia pneumonia or just improved through the anti inflammatory effects of abx, or some other bacterial infection. Has he been tested for all these infections? I dont know, but u think he would have mentioned ruling these other infections out.

    It is known that bacteria or viruses that arent pathogenic can become pathogenic when the immune system is suppressed from immune defiencies, HIV or those on immune supressant drugs for organ transplant or dare I say low nk function. This staph infection in the gut could be from some type of immune supression.

    Saying he's a millionaire with companies in 2 countries doesnt prove his theories, i dont even know why this was mentioned other then to big note himself. He hasnt mentioned which criterias that were used to diagnose the people he sent to bioscreen to show they have normal bacteria. I would guess that he doesnt even know there are different criterias used to diagnose cfs/me. Maybe he doesnt have cfs/me but some chronic infection.

    Theres no proof in anything, its all hear say. Thats fine he can have his pet theory as we all do but then many of us dont go around saying we know everything. He didnt even know who Lipkin was, so that shows how much research he has done into cfs/me.

    After typing all this, i realised it is what he wanted, as he stated he wants us to go after him. Im not doing this for his jollies but so others can read this thread and realise that there is no substance in what he says and to be careful.

    cheers!!!
    aimossy and lansbergen like this.
  8. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
    Maybe you had better see for yourself ...

    Attached Files:

  9. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
    Diagnosed Fibromyalgia and chronic fatigue syndrome ...... Over 5 years

    Attached Files:

  10. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
    My 8 year old daughter

    Thank you .... I appreciate the personal attacks, but everything I say is backed by science ....

    I have 20 others here, all pretty much the same .... But I suppose a research lab from one of Australia's premier universities, Melbourne University, that has been studying ME/CFS for over 10 years probably doesn't know a real lot ...

    BTW .... they use laser mass spectrometery for identification and counting .... Only place in the world using it this way apparently ...... although a lab in Queensland has just taken on the same ....

    Attached Files:

    Last edited: Dec 14, 2013
  11. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
    So heapsreal ... what is your test result from the Melbourne University???

    Cheers....
  12. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
    As I have said, there are different perspectives and I don't make statements I can't back with science ...

    Interlekin 6 and LPS .....
  13. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
    Streptococcus Sanguinis - A pathogen

    Attached Files:

  14. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
    A normal 'Gold Standard' fecal lab test

    Attached Files:

  15. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
    In forums like this, a select few end up having a lot to say and pretty much try and squash different perspectives. I notice a lot of 'advice' being dished out ..... I just hope that nobody actually gets worse because of the so-called 'advice' .... or dies. I would hate to be the one on the end of that legal battle .....

    As I have stated, what I have presented is very well researched and is backed by science ......

    "There are in fact two things, science and opinion;
    the former begets knowledge, the latter ignorance!"
    ..............Hippocrates
  16. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
  17. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157
  18. Elph68

    Elph68 Senior Member

    Messages:
    356
    Likes:
    157

    Attached Files:

  19. Katherine

    Katherine

    Messages:
    72
    Likes:
    40
    UK
    Thanks for those posts Elph :)
    aimossy and rosie26 like this.
  20. knackers323

    knackers323 Senior Member

    Messages:
    779
    Likes:
    152
    I have had similar results from my bioscreen test.

    Do healthy people show up the same sort of results?

    Thanks

See more popular forum discussions.

Share This Page