1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Experiences with Homeo KMAF?

Discussion in 'GcMAF' started by Symptomatic, Oct 30, 2012.

  1. Forebearance

    Forebearance Senior Member

    Messages:
    375
    Likes:
    101
    Great Plains, US
    Hi Suzanne,

    No, I still haven't tried the KMAF! I've just been carrying it around with me. And now I am trying a supplement called Immutol, which is supposed to activate macrophages, and it is agreeing with me so much better than the MAF products that I don't know if I'll ever try the KMAF.

    I'm so sorry to hear of your reaction to aloe. I haven't had that experience. I've been taking small aloe capsules (2 a day), so maybe not as big of a dose. They have been helping my digestive system, but that's about it. I don't remember saying that aloe can increase macrophages. Did somebody else say that, perhaps?

    I will definitely post here if/when I try the KMAF. I hope you will feel better soon!
    Forebearance
  2. Shoesies

    Shoesies Senior Member

  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,577
    Likes:
    5,347
    Albuquerque
  4. suzanne

    suzanne Senior Member

    Messages:
    178
    Likes:
    45
    Hi Forebearance,
    Thanks for the update. I cant wait for someone to post what their experience is with KMAF- after staying on it for a period of time. I only took it once a week over a few weeks, but I definitely had a negative reaction to it days 2-5, or there abouts.
    I will look up the Immutol...can I ask where you buy it and what your dosing schedule is?

    As to the aloe...so strange that years ago I used to be able to tolerate moderate doses of this. This time around, not so. I had a 1/4 cup day 1; 20ml on day 2 and just one small capsule on day 3...it must have been cumulative in terms of the impact...By day 3 I crashed just like I do when I take too much GcMAF, that is why I was so interested when I found out that aloe is meant to increase macrophages. At least that seems to be the case when I type aloe and macrophages into google, a number of sites report that it will boost macrophage activity. It definitely knocked me out...a really unpleasant feeling of inflammation all over my body- just like my last IRIS bout.
  5. Shoesies

    Shoesies Senior Member

    • Sushi must have copied the wrong link
    • They improve macrophage (white blood cell) activity making them up to ten times more effective in engulfing foreign matter.
    • They enhance the macrophage's effectiveness in modulating the entire immune system.
    • They enhance the macrophage's effectiveness to stimulate and direct the production and release of antibodies (increasing the body's own production of interferon, interleukins and more).
    • They increase the number of antibody forming T-cells in the spleen as well as increase the number and activity of killer T-cell and monocyte activity.
    • They are responsible for aloe's special penetration properties.
    • In conjunction with their cellular detoxification support and immune enhancement, they improve allergic reactions.
    • They stimulate bone marrow activity.
    • They stimulate the fibroblasts to release collagen and elastin to make new tissue (inside and out).
    • http://www.hepatitiscfree.com/aloe.html
  6. Forebearance

    Forebearance Senior Member

    Messages:
    375
    Likes:
    101
    Great Plains, US
    Hi Suzanne,

    I bought the Immutol from Amazon, after reading about it on the manufacturer's website. It was cheaper through Amazon. It's a form of beta-glucan, so I guessed it was similar to the mushroom extract I already take and have good luck with.

    I started with two capsules a day. After a week I felt my heart pounding and wasn't sure if it was being caused by the Immutol, or by the building I was sleeping in (which happens to me sometimes). Or there is also the possibility that my pounding heart is not caused by inflammation, but by my thyroid function getting a boost. So regardless, I cut back to 1 capsule a day. Now I am experimenting with 1 capsule every other day.

    I haven't had any other symptoms of inflammation, so the Immutol is still agreeing with me better than the MAF products did. It's interesting that messing with macrophages seems to affect my thyroid, but nobody else has mentioned this. I guess I have to be the canary again.

    Do you take any products that bind with toxins and escort them out of the body? I wonder if some soluble fiber would help you to feel better faster.

    Forebearance
  7. suzanne

    suzanne Senior Member

    Messages:
    178
    Likes:
    45
    Hi Forebearance

    Interesting story about the beta glucans. I also find it odd when I get all sorts of symptoms on these seemingly inocuous supplements.

    I have not tried Immutol but beta glucans made me feel awful- I just cannot remember the dose though, although if I hunted through my diary I would probably find it.

    You mentioned that messing with macrophages makes your thyroid go out of whack. I have noticed that if I boost the levels of toxins in my body from anything ( detox, increased immune system via any pathway) then I get symptoms of low thyroid- for me that tends to show up with a very foggy voice- and probably other things but I cannot so clearly identify the other symptoms as thyroid.

    I have recently introduced some psyllium and that seems to agree with me ok.

    I am experimenting with aloe vera and cannot believe that it can make me feel unwell. But if the theory that it boosts macrophages is accurate, then it may be the case that my immune system is causing me the distress. I recently crashed badly on a dose of day 1: 1/4 cup; day 2: 20 ml and day 3: 10 ml. It turns out this was a dose that stopped me in my tracks for 5 days before I recovers.

    I am now trying 10ml every say 4 days...and even this may be too much. I find this odd.

    I am going to trial the GcMAF again soon but will go for a dose at about 4 ng ( how ridiculous does that sound). Sushi has mentioned to me that some autistic kids do ok on a dose as low as 1 ng. I am afraid it is all a bit of trial and error.
  8. Forebearance

    Forebearance Senior Member

    Messages:
    375
    Likes:
    101
    Great Plains, US
    Hi Suzanne,

    I'm glad the psyillium agrees with you!
    Good luck with your aloe Vera and GcMAF experiments!

    4 ng of GcMAF doesn't sound ridiculous to me. I was taking approx. 1/100 of a ng.

    Forebearance's
  9. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,330
    Likes:
    1,762
    London
    That's really bad Suzanne. It seems that some of us can handle the macrophages activating and other gets worse. I'm good on both the MAF314 and aloe vera always makes me feel better (with more natural strength/less PEM and a better functioning stomach).

    It does need to be the right aloe vera juice as some brands make my stomach feel "burned" and then I feel blurg afterwards and malaisy.

    This is the one that I use best

    http://www.lifestream.co.nz/Products/Lifestream-Biogenic-Aloe-Vera/default.aspx

    p.s. pysillium on the other hand - no way!
  10. suzanne

    suzanne Senior Member

    Messages:
    178
    Likes:
    45
    ukxmrv
    It just puzzles me how some can tolerate much more significant doses of the GcMAF than others. I suspect that dr De M. ( and my dr here in perth) are onto something with now wanting to diagnose and treat other pathogens before/ and in parallel to the GcMAF treatment protocol.

    Just maybe, the pathogen load, and types of pathogens that we harbour, may affect our tolerance level for Gc MAF.

    I am currently in a dilemma about whether to s[end $1600 pn all this testing. The reason I am holding back is that whatever they find, I do not want to do abx any more ( I spent years doing abx thru MP and Wheldon protocols and had mixed results, but never fully recovered for a sustained period)

    Interesting that you feel better on aloe- perhaps it truly does increase macrophage activity.

    Funny comments about psyllium. I think I can interpret your 'no way' comment.

    Forebearance
    you seem to have the same reactions that daffodil and I have experienced :). I am determined not to give up tho, as the GcMAF does move me in the overall right direction, trouble is the symptoms become too intolerable over time.
    GcMAF Australia likes this.
  11. GcMAF Australia

    GcMAF Australia Senior Member

    Messages:
    639
    Likes:
    515
    looks like www.infectolab.de are narrowing down some of the infections and providing guidelines for more specific treatments.
  12. Symptomatic

    Symptomatic Senior Member

    Messages:
    193
    Likes:
    74
    I saw my doctor Tuesday, and had blood pulled for another Nagalase test. I've been taking Homeo-KMAF since October 2012, most of that time at 10 drops, 2X/day. My Nagalase started at 1.80.

    I'll report back here when I have my new Nagalase results, could be 6-8 weeks if the wait I experienced last time is standard.
    GcMAF Australia likes this.
  13. suzanne

    suzanne Senior Member

    Messages:
    178
    Likes:
    45
    GcMAF Australia
    Dr Derham is in contact with infecto lab and suggests a mix of their tests and tests from Australian Biologics. I have chosen just to go with the Sydney based tests at this point. I know that dr D ( based here in Perth) is talking with Infecto lab about treatment protocols, too ( altho I dread the thought of going down the abx pathway, again)

    I would be really surprised if I have borellia but not at all surprised if I have mycoplasma ( just based on the research I have read it seems that people with ME are about 70% likely to have this type of pathogen).

    What will be interesting is what I have- how they suggest I treat it and then whether I can better tolerate the GcMAF as a result. I suspect a long and difficult pathway ahead...just a hunch.

    Whatever my pathogen load, I have always felt better when I first start cats claw, so perhaps I just have never stuck this out for long enough.
    GcMAF Australia likes this.
  14. GcMAF Australia

    GcMAF Australia Senior Member

    Messages:
    639
    Likes:
    515
    Thanks for this information Suzanne
  15. Symptomatic

    Symptomatic Senior Member

    Messages:
    193
    Likes:
    74
    Nagalase test results:
    Oct 2012: 1.80
    April 2013: 1.20

    I've been using Homeo-KMAF, 10 drops 2X/day during that time.
    Looks like I should continue!
    carsia, ukxmrv and GcMAF Australia like this.
  16. GcMAF Australia

    GcMAF Australia Senior Member

    Messages:
    639
    Likes:
    515
    OK that looks like that is a good response
    is it helping??
  17. Symptomatic

    Symptomatic Senior Member

    Messages:
    193
    Likes:
    74
    It's hard to say. A good portion of my typical symptoms were from my hypercalcemia, which is well-controlled by Benicar.

    I will say that my CRP was within normal limits on my most recent testing (though not as low as I'd like) - first time in something like 12 years! Whether that's the Benicar, the lowering of the nagalase, or something else - I'm not sure. I will keep on this path, then retest again in the fall. Once the nagalase is "normal", I'd like to see if my IgG 3 subclass deficiency and/or C3a deficiency has resolved.

    I also still have a number of methylation cycle biochemical deficiencies. I had started on a modified protocol, but then stopped. Waiting to see if my body temperature gets back up to "normal", so I can then use it as an indicator of whether or not the specific supplements I want to take are helping or hurting.
    GcMAF Australia and ukxmrv like this.
  18. suzanne

    suzanne Senior Member

    Messages:
    178
    Likes:
    45
    Whilst I am waiting for my MAF 878 to arrive I decided to re visit my KMAF and try it again.

    Last time I tried it I took 1 drop and it knocked me out for days. I had extreme head pain and body aches and felt just low energy - this lasted about 5 days, each time.

    I took 1/4 of a drop 4 days ago and within the first hour I had increased head pain, bu tolerable. Day 1 I felt really tired and some aching. Day 2 I had extreme head pain and felt terrible. Day 3 some head pain but generally I felt better overall than I normally do. Day 4 - same as day 3, except a mild migraine coming on ( not unussual for me).

    I know it just sounds unbelievable that I could discern any difference with such a small dosage but for me, it is really obvious that my body is reacting.

    I am thinking of taking another dose tomorrow and will try and keep more detailed diary notes.

    I am soon to receive my PCR results for mycoplasma etc...I am not sure if this will pin point any new treatment pathways, but I guess it might help to explain why I get such extreme reactions to any immune boost supplements.

    Will post again when there is something to add.

    I am so very keen to find something that I can tolerate even at a tiny dose- maybe the KMAF will be part of the approach for me= at least it is cheap :) I know, it is too soon to judge anything as sometimes these things have a cumulative effect.

    I wonder if anyone else takes a small dose of KMAF and has strong responses like me? I just wish this illness could come with a better manual!
  19. knackers323

    knackers323 Senior Member

    Messages:
    665
    Likes:
    117
    Hi anyone have anything more to report on KMAF, do they feel it works? If so where can it be ordered from? Thanks
  20. Symptomatic

    Symptomatic Senior Member

    Messages:
    193
    Likes:
    74
    I am having my nagalase retested in the next two weeks. It will likely take another 6-8 weeks to get the results, but I'll post those here.

    The only place I know to purchase Homeo-KMAF (now called Homeo K.Guard) is www.biopure.eu

See more popular forum discussions.

Share This Page