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Wondering what to try next ..

Discussion in 'General Treatment' started by outdamnspot, Feb 7, 2017.

  1. outdamnspot

    outdamnspot Senior Member

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    Been trying out a few different things over the past few months, with no success. I tried addressing methylation, but all it did was causing me to crash horribly. I've experimented with probiotics -- Miyarisan, S. Boulardii, Custom Probiotics d-lactate, Reuteri. The more benign probiotics (Miyarisan and Boulardii) seemed to reduce subjective feelings of sickness/inflammation and improve sleep, but made me lazy and apathetic; the other two seemed to aggravate symptoms of inflammation and cause loose stools, weakness etc.

    My E.Coli levels on my stool test were normal, but I ordered Symbioflor 2 (e coli probiotic) to try regardless, since people seem to do well with Mutaflor. I also did a 2-week course of Flagyl and Ampicillin, which a gastro prescribed, but I didn't see any improvements. The lab who did the stool test has recommended to my GP that I do alternating one week courses of Azithromycin and probiotics for 8 weeks or so, but he won't prescribe the Azithromycin due to lack of evidence. So not sure what to do.

    The problem is that I go through brief phases where I have upticks in energy. But e.g. the last few days I can hit these crashes where I feel quite literally near-death ... I wake up choking for air, feel like just standing is draining every resource from my body, and that I'm running purely on adrenaline. So I get stuck, kind of just spiralling into this hole I can't get out of. The only thing I feel really keeping me alive is coffee enemas.

    I am thinking about maybe trying either:

    1. GcMAF cream
    2. Colostrum + lactoferrin

    When inflammation was reduced on the useful probiotics, that near-death feeling went away, so I'm wondering if either of those two things are worth experimenting with.

    Also, I was speaking to an online friend who studied biology and nursing, and she said it's ridiculous I haven't had any autoimmune diseases ruled out, given the severity of my CFS, and the fact that my brother has Chrohn's; she also mentioned my chronically high monocytes. Is this something I should be pursuing with my GP?
     
  2. Murph

    Murph :)

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    A low risk thing to take might be amino acids. I am taking whey protein isolate each day and I find it quite positive. Amazing in fact. Even if it doesn't work for you it is just protein - the side effect profile is not bad at all. I also get benefit from a beta blocker - propranolol. That requires a prescription.

    Of course, nothing works for everybody! And sometimes it's not even apparent if something is working at first. You just need to keep experimenting... Good luck!
     
    Jenny TipsforME likes this.
  3. sarah darwins

    sarah darwins I told you I was ill

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    Azithromycin led to a considerable improvement for me. I ordered online and the hell with the GP. Obviously there are always slight risks with doing that so it's an individual choice.

    I've had pretty good experiences with lactoferrin (colostrum made no difference to me) but I'd see it more as a supplementary thing, not likely to do great things on its own.
     
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  4. dadouv47

    dadouv47 Senior Member

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    I think it's a good sign that you had immediate improvements on ''basics'' probiotics. I don't know what tests you already have done, but I would definitely investigate more about gut inflammation if I were you (leaky gut etc...). You will certainly need more than probiotics, and even with probiotics, you need a very long time before having significant changes on your gut microbiome.

    And yeah, lactofferin could be good for your gut. It's like an ''anti-inflammatory'' for the gut, but like Sarah said, it's more of a supplement to add than a real treatment.
     
    sarah darwins likes this.
  5. outdamnspot

    outdamnspot Senior Member

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    Well, my only concern with something like Azithromycin would be taking it blindly -- I mean, the lab suggests alternating weeks but that's alongside specific probiotics. How were you using it? And what were you taking it for?

    Ken from CFS Remission recommended I try the spice Haritaki, which looks like it can help kill dysbiotic overgrowths too, though I'm guessing it wouldn't be on par with abx.
     
  6. outdamnspot

    outdamnspot Senior Member

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    I've only had a stool analysis done; nothing for leaky gut etc.

    Do you know if Colostrum/lactoferrin is safe for people who have trouble with dairy?
     
  7. dadouv47

    dadouv47 Senior Member

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    I really don't think it's dangerous but I don't know enough (about colostrum and about you) so don't take my opinion for granted :(

    What kind of stool analysis have you done?
     
  8. sarah darwins

    sarah darwins I told you I was ill

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    For major overgrowth of bacteroides. I think it was one week a month for several months, with probiotics in between.
     
  9. Oberon

    Oberon Senior Member

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    You should 100% pursue potential autoimmune diseases if your brother has Crohn's. Many symptoms of CFS overlap with autoimmune conditions. It's also very possible you have already been tested; you can check with your GP.

    They can complete some fairly basic bloodwork to give you an idea if you have an autoimmune conditions. If you have a lot of symptoms in your gut I would complete a fecal calprotectin test which will give you an indication if it's IBS or IBD.
     
  10. outdamnspot

    outdamnspot Senior Member

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    Yeah, like I said, I did do a two-week course of Flagyl and Ampicillin, with no benefits, but maybe it wasn't long enough. Could you tell me the source you used for the abx.? (PM if not allowed to post here). Also, how did you know which probiotics to use? And in terms of pulsing the abx. .. whose protocol were you following?
     
  11. outdamnspot

    outdamnspot Senior Member

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    Thanks. What is the standard bloodwork they do for AI diseases? Is it included in a CBC? My GP has never brought up AI diseases, so I don't know if I have actually been tested ..
     
  12. sarah darwins

    sarah darwins I told you I was ill

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    I got that from AllDayChemist. Pretty good experience with them, though I would always recommend using a 3rd-party wire service or a prepaid 'credit' card for transactions with online pharmacies.

    Probiotics were as recommended by a private doctor. But really probiotics are a bit of a crap shoot. I'd say go with any good quality ones. I used VSL2 at that time, but it's quite pricey and not available everywhere. Biokult is a much cheaper, good quality alternative.
     
  13. Valentijn

    Valentijn Senior Member

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    It's separate tests, or panels of tests. It would not be included in a CBC, or in any other routine test.
     
  14. outdamnspot

    outdamnspot Senior Member

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    I'm really surprised my GP has never brought it up. I mean, he tested me for HIV of all things last week and I haven't been sexually active for 4 years ..
     
  15. outdamnspot

    outdamnspot Senior Member

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    Do you know if there is any downside to trying probiotics if we still have a potential overgrowth, or can probiotics potentially help outcrowd bad species?

    These were my test results: https://www.dropbox.com/s/6nm19c5ssae61sn/129234.pdf?dl=0

    I'm not sure why the lab suggested an E.Coli probiotic to my GP, since my E.Coli is in the normal range, albeit right at the bottom. I'm going to start the Symbioflor 2 (E.Coli probiotic) tonight anyway, since it's all I have on-hand at the moment.
     
  16. sarah darwins

    sarah darwins I told you I was ill

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    The latter. It's pretty hard to do any harm with probiotics, unless you're taking vast amounts. But some people feel a bit unwell after taking certain ones. You really just have to experiment a bit. Some people recommend taking a lot of different ones in rotation to get plenty of variety of strains, which intuitively makes sense.
     

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