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The Undetectable Infection

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

  1. Hip

    Hip Senior Member

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    taniaaust1 and heapsreal like this.
  2. Elph68

    Elph68 Senior Member

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    I am in Tassie heapsreal, and down here we can't get any testing or treatment. I went to an infectious disease specialist .... He recommended I see a psychiatrist ....

    Same story with a heap of others down here I am in contact with ....
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Interesting, how have u found it so far? Any nk testing done since u have used it?
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I was in contact with a guy from Tassie who had cfs, somewhere along the line i lost contact with him.

    He travelled up to Bris and saw my doc for some testing etc. He is open to suggestions if he thinks they are of value and will do testing for all the infections implicated in cfs like all the herpes infections, mycoplasma, cpn etc etc. most aussie docs havent even heard of hhv6. Immune tests that i have found helpful is the lymphocyte subset test but he also tests immunoglobulin sub classes as well as all the hormones etc.

    In australia its really hard to get viral titres measured and nk function testing is only done by researchers which is where i got my nk function test from. Seems to be alot more available treatment and testing wise in the US but it appears that one has to have really good insurance cover though.
    Elph68 likes this.
  5. Hip

    Hip Senior Member

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    I find germanium gives me more enthusiasm, and a bit more energy. Nothing spectacular, but useful anyway. I have no access to free NK tests.
    Last edited: Dec 6, 2013
    heapsreal likes this.
  6. mellster

    mellster Marco

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    I'm not on much here anymore, but I think the general direction that elph is suggesting is the right one. IMO tissue biopsies are the only way to prove causative factors in CFS and solve a big group of cases. Serum testing only can provide so much info, it is good for checking immune system and general blood/mineral/vitamin stats, inflammatory markers and such, but no pathogen has and (bold prediction) will be found this way and I am only mildly surprised that the "specialists" still go that route instead of admitting failure and starting to obtain funding for serious tissue studies. Once they change the path and go for tissue biopsies they definitely have to include screening for bacteria/microbes classified as "normal" or "opportunistic" in certain parts of the body, the standard tests for classified pathogens only will likely continue to yield negative results. Once they find out a general pattern of overgrowth of specific strains, they should then look at healthy controls to see what keeps those in check. I don't believe antiobiotics will be the be all end all solution but can be applied in extreme cases. Meanwhile supporting the immune system is likely the best path forward. I swear by MAF314 (even as maintenance) and also use a host of supplements figured out via trial and error, such as certain mushroom complexes, AHCC and Germanium sesquioxide (and many more).
    heapsreal, globalpilot and rosie26 like this.
  7. globalpilot

    globalpilot Senior Member

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    I agree wholeheartedly with you about the need to analyze tissues. This is precisely how I determined I have enterovirial and bacterial overgrowth in my gut. Of course the issue here is cost and invasiveness. Heaps of antibody tests were negative or not conclusive.

    What keeps the enterovirus and bacteria out of the small intestine is the big issue for me and so far, I have no clue. I do think prior antibiotic use is an issue. http://www.ncbi.nlm.nih.gov/pubmed/16940110

    I'm curious - what has the MAF314 done for you ?
    rosie26 likes this.
  8. globalpilot

    globalpilot Senior Member

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    Did he heal ?
  9. mellster

    mellster Marco

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    I went from needing 10+ hours sleep and being exhausted (plus PEM/PENE) to 7+ hours of sleep and having great energy (incl. hard workouts) almost every day. Also my NK cell function improved (I still do routine maintenance tests every 6-12 months). I also had a cervical (neck) FNA done recently (as one of the last major tests to close the CFS chapter for now) where I specifically instructed the pathologist what to test fort and use, or at least tried to. All I got was a mild laugh and that they do only the standardized tests recognized by the hospital/insurance and they certainly do no one-offs for a loud-mouth ;) It came back negative on everything, consisted roughly of 91% lymphocytes, 9% debris and the only comment was that a high CD4:CD8 ratio (5:1) in those local cells was noted, which is indicative of, duh, infection. There was also some flow cytometry around bright to dim ratio if anybody is interested, but otherwise it was normal. I am sure there is an undetected infection driving chronic inflammation processes in 90% of the cases and the auto-immune excuse is mostly bullshit. There are legit cases of sometimes even severe auto-immune conditions, but those most often show up right after birth very early on. I do not buy much into developed auto-immunity (rare cases maybe), the immune system is not stupid and IMO in most of the cases is fighting something and it needs help with that rather than being suppressed.
    Sidereal, Elph68 and heapsreal like this.
  10. mellster

    mellster Marco

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    I assume you were referring to the guy I mentioned who got banned. He claimed he did a full recovery in his late 20s after starting treatment, but he went to extremes such as intravenous ABx which def would need doctor supervision. And he said he was sick since childhood.
    Elph68 likes this.
  11. knackers323

    knackers323 Senior Member

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    Do you remember how and what he treated?
  12. mellster

    mellster Marco

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    Sorry, I don't know specifics. But I have stayed interested in CFS and will and I hope in general that people who have healed themselves or claimed to have figured out the right tests for their pathogens can get a good platform beyond the reach of the medical establishment. I can think of crowd-sourcing/crowd-funding as a possible means and maybe team up with researchers/scientists who are interested in those kind of projects. The solutions are likely not going to come from a doctor's office.
    Sidereal and leela like this.
  13. taniaaust1

    taniaaust1 Senior Member

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    Thanks greatly for this. I had no germanium at all showing on my hair analyses and Ive never been able to get my natural killer cell activity tested so who knows what is going on there.

    I also had no lithium at all showing up on it either and taking that for the past year has doubled my white blood cell count so it's now not so low that its indicating chronic infection.

    I personally think a lot more needs to be known about minerals and essential trace minerals as all this stuff could be really affecting us and it may be more then just the methylation cycle we may need to consider. Maybe ME could be multiple deficiency issues or body not being able to aborb certain forms hence impacting everything it does including our immune system and making people more susceptable to certain viruses etc
  14. Elph68

    Elph68 Senior Member

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    Hi Marco,

    This is where I am headed also .... and with what I will present over the next couple of weeks gives a possible explanation to why he was sick from childhood and later into CFS as I have studied (questioned) some people here in my area that were the same ....
  15. Elph68

    Elph68 Senior Member

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    OK .... getting back to the undetectable infection 101 ...

    Before I move onto the next bit it seems some still can't get their head around where I am coming from so I will put it this way ....

    Let us pretend we have an island split into 2 countries east and west and down the middle there is a great big wall and along that wall are villages on both sides. The 2 countries do different things one makes bread, one milks cows so they trade and both are satisfied (symbiotic relationship). Now the milk guys think that if they could get through the wall, they would be able to get more bread, but they don't want the bread guys to know .... so a rogue faction starts guerilla warefare from 1 of the villages. The bread guys are total pacifists, their laws say they can only attack those that cross the wall (which is how the immune system works) and their army is limited because everybody is busy making bread. But this guerilla warefare is relentless and the milk guys out number the bread guys army 1000 to 1. As the bulk of the milk guys are peaceful, they are still able to trade their milk for bread .... but the rogue faction gradually grows from village to village as all along the wall are peaceful communities that trade with each other, it keeps growing until it is able to overrun the bread guys army and is therefore unable to protect the breadmakers which results in less bread for all ....

    That is why the immune system breaks down .... it is over run with pathogenic strains of normal flora .......And sure, some viruses may be/are a part of this, and I would not be surprised those that have the worst symptoms are having viruses complicating or worsening the disease .....

    I hope you can see what i am suggesting with my first part .....
  16. snowathlete

    snowathlete

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    I haven't yet read all this thread (I will when I can but I've only managed two pages so far) but thought I'd make one or two comments.

    I am not an expert, but I don't think all bacteria cause pus. In fact I think many bacterial infections don't result in pus, it's just most people's experience of bacterial infections are those that result in pus, such as an infected finger or whatever which will often result in pus. Things like ulcerative colitis (which I now have too) also produce pus. But some other bacterial infections, such as intracellular bacteria - I am now aware of them resulting in pus. As far as I know pus is a result of the immune response, but many bacteria evade so don't result in that. Just saying. I'm not knocking your overall theory which I think is interesting.

    I had a stool test done earlier this year and my enterococcus was 0, my streptococcus was 0.31 (<5 is normal). The test didn't look at viridans I don't think. Nevertheless, I would think your theory could apply to several different 'normal' bacteria species. How come you are focused on these three specifically? Is it because of the dental link you talk about? (sorry if you have already answered this somewhere on pages 3 or up)
  17. Elph68

    Elph68 Senior Member

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    Hi Snowathlete,

    You will see that I am focusing on the non-pyogenic (non puss forming) strains ....

    The suspected cause of ulcerative colitis is MAPS (Mycobacterium avium subspecies paratuberculosis)
    or enterococcus faecalis + streptococcus + lactobacillus ..... If that helps you at all ...

    Cheers.
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm afraid I find your analogies rather difficult to follow, but I had the same problem with those of the scientist Jonathan Edwards in his thread on rituximab! I find it much easier to follow straightforward science (and his was very interesting and clear), so I have already understood your theory. I thought that most people had - they just may not agree with it and are asking you to justify it.

    Could you outline your reason(s) for rejecting autoimmune hypotheses? One involves a generally similar pattern to yours except that it is more focused on the gut mucosa rather than including other barriers, and does not require specific antigens or pathogens for setting off the (auto)immune process, such as this paper I posted the link to earlier - don't know if you looked at it.
    heapsreal likes this.
  19. lansbergen

    lansbergen Senior Member

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    If you mean overgrow, just say so.
  20. Elph68

    Elph68 Senior Member

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    I am only going off personal experience, the questioning of over 20 other people and the scientific evidence that I have collected through my desktop research ....

    I will get the full story out and I have watched this forum for quite a while and like all forums a lot of the language (scientific) is difficult for most people to get their head around ..... so I am keeping it real basic .... and instead of just dumping a mini thesis on this forum .... I give it one bite at a time ...... And quite frankly the direction that has been taken in this research has lead to the psychiatrists getting closer to a win ....

    As I said, I don't expect anybody to believe what I say, BUT, I will keep putting my best foot forward in the direction I believe is right .....

    It is time for a new direction .......

    The body can't continuously fight a massive inflammation from all the mucous membranes all the time and expect to remain in perfect health .... The immune system is overloaded and breaks ..... So I am removing the inflammation and if these darn Aussie doctors can't get their heads out of the sand they are going to find they have a war on their hands .

    Feedback on my multi abx drug therapy .... after a week of treatment for the first time in nearly 3 years I have no brain fog, I am as clear as a bell ..... I do not have the feeling of my body being so heavy that it is made of lead and the metallic taste has gone from my mouth (I will talk about this soon) .... My muscles are as sore as hell however, the same soreness you get on day 2 after a seriously heavy weight workout in the gym ..... This is the right course of treatment for my situation .... BUT, as this is new ground, the treatment may not be long enough and as the bugs are resistant to all the abx I am taking, the symptoms may return when I stop ..... So then I will start on stage 2 ...

    Eventually the right person will see, or a number of people will see and what I am suggesting will be looked at ....

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