The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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  1. Tiger Lily 813

    Tiger Lily 813 Senior Member

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    Hi guys,

    I tried N-Acetyl Cysteine today because- while I am waiting on testing to attempt to figure out what exactly has me feeling toxic symptoms (Is it from lyme? Adrenal fatigue-only? Is there mold? Which came first? I am trying so hard to find these answers. In the meantime, I know regardless of the origin-- that I have toxins that I need rid of) I wanted to try this supplement.

    It made me a little sluggish and gave me a monster headache. Would it likely be that this is a sign of detox and therefore it’s actually a good sign? Or, does that suggest I should not be taking it. Is there a way to find out?

    I am still waiting on my genetic data and Igenex tests and who knows if there is mold really but I am moving in a couple of months anyways!

    Thank you again for your continued support, xo
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its not really a reaction a healthy person would had so i would guess that its improving your livers detoxification?? If its bearable try to continue and see if these symptoms ease up, or lower dose or alternate days etc. Its obviously found something out of whack.

    Do u take other supps or meds? Im thinking certain meds could also be slowing down your livers detoxification???
     
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  3. Critterina

    Critterina Senior Member

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    NAC is a problem for people who are histamine intolerant. My symptoms involved the GI tract from one end to the other. As I already had other reasons for sluggishness and headaches, I can't say for sure that it added to it. The most memorable parts were that I had bad belly bloat (to the tune of 6-7 lbs) and itchy anus from the NAC.
     
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  4. minkeygirl

    minkeygirl But I Look So Good.

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    I just started on NAC too. I was surprised when I had no reaction at all. I tried it years ago and had a lot of problems and someone here said it took about 5 days for her to feel ok.

    I started on it because I read a protocol that uses it to treat C. Pneumonia so if you had a reaction there might be some infection going on.
     
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  5. xrunner

    xrunner Senior Member

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    The quick reaction to NAC but most of all the headache may be indicators of mercury mobilization. In my case, the headache started just after a couple of hours and a relatively small dose of NAC. It was enough to scare me as I knew I had mercury.

    As regards NAC and CPn, NAC is helpful in reducing only the Elementary bodies of the bacteria but won't help with the other forms, i.e. the Reticular (intracellular) body and Cryptic form. There is a NAC-flu test (not infallible) which aims to uncover if someone has CPn, or at least a high load of Elementary bodies. That requires pretty high doses of NAC but it should take a few days to come through as flu-like symptoms.


    The NAC Test
    One indirect indicator of chronic infection with this organism is the N-acetyl cysteine test. This relies on the ability of NAC to rupture the extracellular Elementary Body by opening up surface disulphide bonds in the organism’s geodesic coat, as described above. The EB opens and perishes. The release of naked bacterial components causes local inflammatory symptoms. Because EBs are more numerous in primary respiratory infections, the acellular load of EBs is likely to be highest around respiratory structures. In a positive NAC test the daily administration of 2.4 G of NAC will cause, after a few days, sinusitis-like symptoms, with watery mucous; also a cough productive of a clear, moderately viscous sputum. Systemic symptoms — 'NAC flu' — may also occur. If symptoms are severe, the dose of NAC may be cut down to 600mg and slowly built up as may be tolerated. Symptoms wane, sometimes quickly, after a few days if the chlamydial load is small; if the load is large they may continue for a month or more as the EBs are destroyed and their remains removed by the immune system. As far as I am aware, NAC is unlikely to produce die-off reactions with any other genus.
    http://www.davidwheldon.co.uk/NAC.html
     
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  6. Tiger Lily 813

    Tiger Lily 813 Senior Member

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    Thanks so much everyone!! I really can’t tell if I have histamine problems being as I am itchy a lot, but also have resistant fungal problems and skin mites. I will def try a lower dose, the next day that I can bare it! The dosage I took was not that much, but clearly something I need to work up to doing.

    If it is a mercury detox, or some such detox (in the past 4 years I’ve had too much paint exposure as well as pesticide exposure and now maybe mold but we don’t know) should I then continue it, or could it accelerate and become dangerous? I honestly am completely new to the idea of chelating. But there’s no doubt it’s something I should do at some point.
    I am not sure if I am healthy enough to start it at this time, and have to ask my doctor about that. I know there is an order to attacking complex illnesses so that you don’t further overload a barely functioning pathway. I always test negative for chlamydia so I don’t think it’s that… Much, much appreciated!!!
     
  7. Critterina

    Critterina Senior Member

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    @Tiger Lily 813 ,
    It's pretty easy to tell if you have histamine problems by altering your diet and seeing whether you have a marked improvement. It's not so easy to alter your diet, but here's my new (compact) list. The stuff that "SEEMS OK?" is supposed to have histamine in it, but I (just me, not anyone else) don't seem to see much if any reaction to small quantities (for example, a teaspoon of apricot jam, two strawberries.) I would avoid them during the test, then test each individually. The thing is that you may have to be really strict to see the improvement. Good luck!
     

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  8. xrunner

    xrunner Senior Member

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    @Tiger Lily 813
    Personally, I would not use NAC for chelating mercury or anything else.
    If you wanted to raise glutathione and help your body detox naturally, you could look into a safer method such as the Simplified Methylation Protocol.
     
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  9. Tiger Lily 813

    Tiger Lily 813 Senior Member

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    Thanks @Critterina I will look into the histamine list although I fear between that and the alkaline AND candida diet I will have nothing left ; ) !
    Thank you @xrunner ! Unfortunately I got immune dysfunction problems from methyB12/methylfolate that I cannot seem to improve no matter what, so I need to lay low from that currently. Strange I do not have detox reactions from FIR saunas, nystatin, seemingly anything. My history has been that I just slowly get better rather than herxing. But the NAC seems to have touched on something...
     
  10. Critterina

    Critterina Senior Member

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    I hear you! I am seeing a doctor for the first time today who deals in functional medicine. I'm afraid he's going to do the First Line Therapy thing. I can use about 1 in 20 of the recipes in that thing. (not to mention hating Dr. Perlmutter and his medical food)

    I have no experience with candida diets (but I bet you don't get a lot of carbs or sugars!) but regarding alkalinity, the pH of my last urine sample was 8, which was at the high-alkaline end of the range. So, at least that is possibly copacetic.

    I noticed that discussion of Elementary Bodies (nothing I ever came across in getting my degree in microbiology) mentioned suffering through the symptoms until they clear. Just for the record, I was using 600 mg 3x/day, and my symptoms continued consistent for 13 weeks. The ceased when I stopped the NAC.
     
  11. Grigor

    Grigor Senior Member

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    I reacted super heavy on NAC . First day was relaxed . The days after hardly could walk. Stomach pain ( which seems to be normal) etc. So I stopped. But I read here that it might pass.

    I will first do an anti-histamine test and see what that says .
     
  12. Tiger Lily 813

    Tiger Lily 813 Senior Member

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    @Critterina you know I never really "react" to foods unless it's something with the slightest amount of sugar which I cannot do- or if I have too many carbs (even the non-gluten carbs can be a problem)- and part of that is because I have restricted these so long. But otherwise I never notice "histamine symptoms," in response to food. Is there another way to test? I have insurance and go to my doctor (holistic & conventional) constantly so if there is a way to test histamine, please let me know. I'm also supposed to go to an allergist/immunologist guy who is supposedly very good, but doesn't take insurance, meh, none of the reeeeally good docs do!
    I do think the NAC might have been beneficial- I did not take it today, but I'm having a really great day so maybe it cleaned something out when I had the monster headache? Possible...
     
  13. Grigor

    Grigor Senior Member

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    I'm in Holland and will let my stool being tested.
     
  14. Tiger Lily 813

    Tiger Lily 813 Senior Member

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    Oh, thank you @Grigor yeah those tests show a lot of things! They are pretty expensive in the states though so I am trying to see if there are tests that my insurance would cover... I've had soooo many uncovered tests lately and have reached my max with that : ) I hope your test is revealing!!
     
  15. Grigor

    Grigor Senior Member

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    I know right . Mine is also not being covered. But I remember that when I was seeing dr. De Meileir in Belgium I did a while some anti- hystamine diet and it helped somewhat . For some reason I stopped .But I now want to be 100 % sure. So I'm gonna test .
     
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  16. Critterina

    Critterina Senior Member

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    @Tiger Lily 813 ,
    Yes, there is another way to test. There's a company in Vienna that makes a test of the activity level of DAO (diamine oxidase, the enzyme that breaks down histamines and other biologic amines). I understand there are labs in the EU (mostly Germany, I think) that perform this test. I'm still trying to find out if there are labs in the states that do these tests.
    I think it's important to distinguish between and DAO activity test and just the level of the DAO enzyme. Mine have mutations that make them less active (and make people prone to schizophrenia - which does a lot to help me accept that I can't have tomatoes, a small sacrifice by comparison). So my levels could test OK, but the activity still be impaired.
    I am so glad you're having a terrific day - hope tomorrow is a repeat!!!
     
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