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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.
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The Undetectable Infection

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

  1. alex3619

    alex3619 Senior Member

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    A comment on Lipkin and the gut microbiome. Lipkin does not typically look for specific things but there have been exceptions. He use mass throughput genetic assays and other things to identify every bug. He compares those to databases of known bugs, presumably an automated process. By bug I mean virus, bacteria, fungi or whatever is in his sights in a particular study. His main expertise is in viruses, but he does not work alone.
    MeSci, aimossy and Elph68 like this.
  2. rosie26

    rosie26 Senior Member

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    Appreciate your input Elph68, and bringing up this subject. I think this whole area needs to be studied more :thumbsup:
    Last edited: Dec 4, 2013
    leela, aimossy and Elph68 like this.
  3. Elph68

    Elph68 Senior Member

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    Hi Alex,
    It puts a whole new perspective on the game when parthenogenesis of the bacteria is added to the mix ....
  4. knackers323

    knackers323 Senior Member

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    Hi could you please tell us how you have improved. Thanks
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    How do u explain someone like myself where my wife and 2 kids dont have cfs or those symptoms you mention. I dont have those GI symptoms etc u mention. And my family have been with me the whole 12yrs of this cfs.i also have low nk function and bright cell nk function which is a very common biomarker in cfs. There are many others similar to me.

    Personally I think u may be describing a sub group.
    leela, SOC, Valentijn and 3 others like this.
  6. rosie26

    rosie26 Senior Member

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    yep, heaps, it would be a subgroup. My thoughts on it.
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  7. rosie26

    rosie26 Senior Member

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    ME could have various start up causes but each leads us to the same end point ME
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  8. Elph68

    Elph68 Senior Member

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    Hi Heapsreal,

    You are long term, I am only new .... This Lipkin which was pointed out to me says that the disease changes after 3 years ..... long term inflammation damage is an unknown..... How do you know you don't have these bugs in your gut?? They don't always cause IBS.... And if you don't have a sore throat or prostate then you don't pass it on ..... It is about bacterial load and the point of entry .....

    As I said, this is the undetectable infection and they will get results if they start looking ...

    I have also said I have been kicked out of all the doctors and by speaking out, I am now being threatened with defamation ...... So I don't expect any different here ... And if this is only a sub-group as you say .... then removing them from the disease helps in the long term .....
  9. Elph68

    Elph68 Senior Member

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    The simple scientific fact is that long term production of pro-inflammatory cytokine interleukin - 6 destroys your joints, internal organs, Central Nervous System, causes brain dysfunction and cancer. And after 12 years of toxic poisoning and fighting a never ending battle, it is no surprise that the immune system starts breaking down also .... makes simple sense to me .... But as I said, doctors won't listen, so why any different here ....

    The undetectable infection = the unbelievable infection ....
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I just think its a big call saying its the cause of cfs me.
    Many people have improved with different treatments. If your theory was correct with all cfsers then people wouldnt improve with antivirals. Rituximab. Ampligen etc.

    I probably do have some type of gut infection but any infection is possible with a dysfunctional immune system. Hiv for example, they get sick from the opportunistic infections not directly from hiv.

    Theres definately a group of cfsers who have gi issues and its something that some of the cfs gurus treat such as kdm.

    Im not saying your incorrect but its a big call. Many of us have heard the big call quite a few times so are very cautious.

    Dont feel threatened as we are interested and think that what u have to say can help some, but to say help all of us is a big call. If it pans out that taking 3 abx will cure us then I will be all over it but there needs to be more evidence.
    Jon_Tradicionali, SOC, vli and 3 others like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Theres many theories that make sense. An undetectable infection or immune defiency or auto immune illness or a known infection. Its the million dollar question.

    Just need to back up what your saying which is what people want to hear before they consider a theory.

    Cheers
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  12. Elph68

    Elph68 Senior Member

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    Mate at the end of the day .... nobody is looking at what is right in front of them .... all the doc's I have visited don't think it is possible .... but it is possible to prove .... they just have to work out the antibody that is produced .....

    And getting back to what you say ... anything that causes ongoing interleukin - 6 production, and can maintain this for the long term .... is the likely cause ....
  13. Elph68

    Elph68 Senior Member

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    np .... that is why I am doing this piece by piece .... and my inbox tells me I am not alone in my thinking ...
  14. rosie26

    rosie26 Senior Member

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    Elph68
    I am interested that others are interested as well by what you said about your inbox. Perhaps a private group could be started to chat about more personal things ? Just a thought.
  15. Elph68

    Elph68 Senior Member

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    Hi Rosie,

    If it is not a public thread .....
  16. rosie26

    rosie26 Senior Member

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    We do have private groups here on PR. I have never joined any. But it is a possibility if others are interested in this and don't want to talk about more personal stuff on these public forum. If you look at the top bar on the home page you will see that there is a group section, they are closed groups.
    Last edited: Dec 4, 2013
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  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    most docs dont do research but follow research, so if it hasnt been discovered or proved then they dont touch it.
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    il6 occurs from any ongoing infection, its not specific to any one infection. IL6 is high in active herpes viruses cmv/ebv etc.
    Jon_Tradicionali and aimossy like this.
  19. Hip

    Hip Senior Member

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    @Elph68
    You may want to check the list of symptoms on the very top of my webpage HERE. Do you have these same symptoms?

    I was hit with these symptoms after contracting a nasty respiratory virus — a virus that was diagnosed from its symptoms as very likely to be an enterovirus (enteroviruses are very strongly linked to ME/CFS).

    I noticed you said that your infection spread to the mucous membranes of the rectum via saliva on your finger, when you made contact with your rectum.

    Well, a very similar thing happen to me with my virus: I already had the chronic sore throat (= a chronic mucous membrane infection) caused by my virus for two years or so, when I happened to touch the urethral opening at the end of my penis, while there was some saliva on my finger. Well, within 24 hours, all the mucous membranes of my urethral tube suddenly became infected and inflamed, and even now, many years later, they are still inflamed, albeit now mildly. I had my virus for over two years in the mucous membranes of my mouth, throat, sinuses, stomach, intestines, but then as soon as some of my saliva landed on the mucous membranes of my urethra, wham, the infection was instantly transferred to the urethra.

    So my virus seems to have very strong affinity for infecting the mucous membranes of the body. I make sure now that I never touch my eyes or rectum with saliva on my fingers.

    Quite a few people who caught my virus also developed IBS.

    You say your daughter is starting to lose her spark: well, the virus I caught seems to affect the mind quite strongly in some people, and many suffer from emotional flatness and anhedonia after they catch this virus, and then become people who have lost their sparkle.

    So.... might you and your family have this virus?
    rosie26 likes this.
  20. PDXhausted

    PDXhausted Senior Member

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    I find this theory quite interesting for my personal situation- I'd be interested in a private group.
    rosie26 likes this.

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