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Huge improvement in two hours

Discussion in 'General ME/CFS Discussion' started by knackers323, Dec 24, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I just did an internet search for cystinosis and had a quick look at a few hits, which indicate that it is a very rare heridary disease, e.g. here.
  2. Daffodil

    Daffodil Senior Member

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    just wanted to add that I also had near recovery for a week after taking xifaxan, a gut antibiotic.
    Adlyfrost likes this.
  3. Leopardtail

    Leopardtail Senior Member

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    Agreed MeSci, the 'true' disease is considered uncommon and is genetic. From the limited amount I understand, any situation creating very high cystine would produce similar symptoms without the genetic disease. I have a long way to go before I understand this the way I do the endocrine and Mito stuff. I can only give so much info at this point - I am just getting started.

    My thinking is:
    1. Selenium deficiency is also considered very rare but is sufficiently common in ME that MyHill routinely recommends supplementation as part of her protocol. My problems with Glutathione and T3 were definitely upstream of that.
    2. In turn Cystine lowers Selenium via Polyuria, but is not routinely test for. I found indications that high oxidative stress is implicated in cystine generation.
    This seems like a very plausible thing to look at, and not too expensive - hence the suggestion. I found it as a result of a comprehensive amino acid panel, I wasn't actually looking for it. I don't view it as a 'dead cert' more as a potential 'easy win'.

    My feeling is that this may be analgous to common sub-clinical thyroid and adrenal problems in ME patients and it does create a lot of ME like symptoms that get little discussion.

    Either way, I wish you success sorting out your polyuria, when I manage to lower mine the improvement in my cognition is stunning.

    Leo.
  4. xks201

    xks201 Senior Member

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    If you have constant fevers you need an infectious disease workup for parasites viruses and bacteria.....that is not normal imo.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Solute/osmotic diuresis often involves depletion of multiple nutrients. This is almost-certainly why I suffered dental damage and a fracture after my first attack of severe hyponatraemia - I was losing other minerals as well as sodium. Since supplementing bone minerals my teeth and bones have felt much stronger (subjective, I know). I started supplementing after my second attack (3 years later) which was taken seriously, unlike the first which was dismissed by a GP over the phone as a panic attack (of which I had no history) and I was left alone in a near-life-threatening condition. If the mineral loss had been picked up the first time I would not have suffered the dental damage or the fracture. Even after the second attack it was left to me to research what was happening so as to prevent recurrence.

    If you find the source of your info on cystinosis, please post the references and/or links here. People here are doing internet research all the time, with varying levels of expertise, but I have found nothing in PR about people with ME/CFS having high cystine levels, although I have found posts stating the opposite (low levels) and one recommending supplementing it!

    Who did your amino acid testing?
  6. Leopardtail

    Leopardtail Senior Member

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    If you are after a smoking gun, I did not find one. As I said earlier this is a possible easy win, but no dead cert.

    My testing was done by Genova UK (fasting amino acid profile).

    Was that post recommending supplementation for Cystine or Cysteine? I found due to to the tiny difference in spelling quite a few articles confuse the two when I checked the enzymes involved. I have seen quite a few articles referring to Cyst(e)ine where the authors considered the two be be synonymous (a common error). If it was Cystine (not Cysteine) supplementation please post a link, I would love to read it.

    My focus was on the effects of high Cystine and on urination to confirm the accuracy of information seen in articles from more reliable sources. I was not checking correlation with CFS with any effort since I knew my situation. I found little in the way of articles and some issues. One example being a meta-anlysis [Droge] of multiple diseases reporting high Glutamate in CFS - where Glutamate results have been quite variable.

    Should I come across anything relevant, I will let you know, please do the same. :)
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    As a medical scientist I am well aware that cystine and cysteine are different compounds.

    Here is the post. You can find others referring to low cystine from the basic PR search box in the top right. I cannot vouch for the accuracy of these posts, of course, and don't have time to read them.

    Polyuria appears to be common in ME. The dilute type usually responds well to desmopressin, as it is almost-certainly due to a lack of vasopressin, which has been found in ME/CFS.

    The solute/osmotic type of polyuria has a much wider range of possible causes, as this paper explains. (I have the full text but can't find a link now.)

    Why not look at the PR threads on polyuria?
  8. Leopardtail

    Leopardtail Senior Member

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    Assumed you would be, was very surprised many researchers didn't though, hence the warning as a time saver.

    Already found my personal issue hence no need for further investigation as yet.

    Regards the endocrine causes, well aware of them given my background, did a comprehensive pubmed search some time ago. My personal pattern is raised trophic hormones with low 'useful' hormones across all three glands hence with fairly balanced electrolytes hence AVP alone unlikely for me personally.

    The solute/osmotic angle is on my to do list, so thanks for the paper. :)
    Last edited: Jun 11, 2014
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I may try to upload the full text if I get the time. Maybe best to do it in a polyuria thread as this thread needs to get back to its core subject, I think. I'll let you know if I get round to it and succeed.
  10. Leopardtail

    Leopardtail Senior Member

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    Tx
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The info on polyuria is now in this thread, plus links to a couple of new blogposts I have done.
  12. JAH

    JAH Senior Member

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    Hi knackers, a friend of mine has recommended my taking Del Immune, so I have been rereading this thread. One thing that caught my eye was your description of "broken up shells of rhamnous powder". Do you know what the powder is made from, shells of what? Have a severe shellfish allergy, so I can't take certain supplements,

    Thanks, I know you stopped taking the powder, hope you are feeling ok,

    JAH
  13. Adlyfrost

    Adlyfrost Senior Member

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    @Antares in NYC : Sometimes I feel worse when I overstimulate Th1. This is not necessarily bad- just means I need to back down a bit to get Th1 and Th2 in balance.

    To do this I just reduce Th1 supplements (reduce dosage not illuminate- or I will just take it on the weekends) or, take some balancing Th2 supplements. For example, if I take a lot of licorice, garlic and olive leaf extract (Th1 stimulating) and feel flu ish I might drink a cup of green tea (th2 stimulating) and the next day go lighter on the Th1 stuff.

    Here are two articles that may help understand more about th1 vs th2: http://www.drkaslow.com/html/immune_restoration.html and http://www.thepaleomom.com/2013/01/3254.html
  14. Adlyfrost

    Adlyfrost Senior Member

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    Sometimes when I take too much Th1 stuff my flu symptoms come back too strong. Sometimes Th1 will activate autoimmunity too and make me crash or unable to heal. Posting this because I want people to consider that TH1 vs Th2 is not black and white. Healthy immune system has to be balanced. Yes, CFSers have malfunction with TH1 but increasing TH1 is not always the solution. It is not always that simple.
    Leopardtail likes this.
  15. Adlyfrost

    Adlyfrost Senior Member

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    @xks201 : The problem with work up for viruses with patients w/ CFS/ME is that most of the time enteroviruses are impossible to detect in the bloodstream. Dr. Chia is one of the few doctors who biopsies his patients and find enteroviruses in the tissues and linings of the gut and GI.
    Last edited: Jul 6, 2014
  16. Adlyfrost

    Adlyfrost Senior Member

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    @xks201 : re: .....that is not normal imo.

    Yea, nothing about having a chronic disease is normal!!!! :-(
  17. Leopardtail

    Leopardtail Senior Member

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    @MeSci
    Is it your understanding that Cortisol stimulates Th1 or Th2 immune response?
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't know. Not my area of expertise. Maybe someone else knows.
  19. knackers323

    knackers323 Senior Member

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    Have you ever followed this up?
  20. knackers323

    knackers323 Senior Member

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    I had completely forgotten about this thread.

    Did anyone ever try the product?

    What were the results?

    I hope it helped someone

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