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TOPIC: GcMAF or Helminthic Therapy for ME and CFS

GcMAF or Helminthic Therapy for ME and CFS 4 years 10 months ago #1

  • Maff
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Hi all,

I have rather been stagnating in my recovery attempts over the past 18 months after trying fecal transplants without any success (thankfully no side-effects either!).

A little bit of backgorund - I have suffered from M.E./Chronic Fatigue Syndrome for 22 years having been diagnosed on my 12th birthday. I have always had significant gut issues, both prior to developing ME/CFS, and even more so subsequently. These have variously been diagnosed as IBS, ileal Candida/yeast overgrowth and SIBO, and increased intestinal permeability (leaky gut syndrome).

I have had a number of successes treating associated illness (chemical sensitivity, seasonal affective disorder) but the gut has been my achilles heel when it comes to making significant progress with ME/CFS and my overall health and well-being.

I am now ready to try yet another treatment and am considering those which theoretically should positively influence both my gut ecology and immune function. Although entirely different approaches I am currently considering GcMAF and helminthic therapy...leaning towards helminthic therapy.

I have had various immunological testing done at Red Labs (Belgium) with results showing no clear pattern...but definite immune dysfunction/deregulation. Cytokine profiling showed both Th1 AND Th2 dominance in different tests and my Perforin mRNA expression (natural killer (NK) cell activity) was off the charts high at 1675 - more than double the top end of the lab's reference range (250 - 750).

My thinking is that helminthic therapy will address my gut dysbiosis while also modulating immune function and returning these values to the normal range. On the other hand, my ME/CFS started with the classic recurrent viral infection that just never went away, so perhaps the macrophage activation afforded by GcMAF may be the way to go.

To be honest I am wary of tampering with my immune function at all as past experience in this area has led to significant negative effects.

I'd therefore appreciate any experiences or advice those of you out there who might have tried either or both of these treatment approaches could offer me and those in a similar position.

Many thanks in advance!
If you are going through hell, keep going - Winston Churchill
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Re: GcMAF or Helminthic Therapy for ME and CFS 4 years 9 months ago #2

  • Jodie
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I take it you've googled success stories for both those Maff - there's loads of info... I've never heard of GcMAF, will have to look that up.
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Re: GcMAF or Helminthic Therapy for ME and CFS 4 years 9 months ago #3

  • Maff
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Yes, I've done a good amount of Googling Jodie :)

What I'd really like is to hear from anyone who has had ME/CFS along with severe gut dysbiosis (like myself) and undergone either of these treatments.

My worry is that I'll feel too ill to get out of bed for a substantial amount of time with either...but on the other hand they are theoretically good options in the long run.

I meant to post a link yesterday discussing who might respond best to GcMAF based on genetic variations in the vitamin D receptor (VDR). It seems experienced ME/CFS doctors have somewhat different perspectives (or did in 2011 when the blog post was published). Read about it here.

GcMAF is a synthetic version of a chemical that occurs naturally in the body and stimulates the activity of macrophages - the large white blood cells that are first-responders to infection and "gobble up" pathogens via the process known as phagocytosis.
If you are going through hell, keep going - Winston Churchill
Last Edit: 4 years 9 months ago by Maff.
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Re: GcMAF or Helminthic Therapy for ME and CFS 4 years 9 months ago #4

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'GcMAF is a synthetic version of a chemical that occurs naturally in the body and stimulates the activity of macrophages - the large white blood cells that are first-responders to infection and "gobble up" pathogens via the process known as phagocytosis.'

oh interesting.

I once had a test where my TH1, TH2 's were both wayyyy off the chart and no one's been able to explain it - the test centre asked me if I'd just had 'flu or something, I said no, nothing that' I'm aware of!

your link , in case anyone wants to read up. Looks very technical. I agree about the unpredictable consequences tho, you be very very careful out there ;) 'First do no harm' applies to us being our own doctors too, I'm always really careful with anything new, had too many unpredictable experiences!
Last Edit: 4 years 9 months ago by Maff.
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Re: GcMAF or Helminthic Therapy for ME and CFS 4 years 9 months ago #5

  • Maff
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Nobody could explain my Th1/Th2 ratio extrapolated from various cytokine levels either Jodie. My NK function being high doesn't fit with theories of chronic fatigue syndrome either as it is always suggested to be lower than normal in patients!

The link talks about single nucleotide polymorphisms (SNPs) - which are tiny genetic mutations - in the cell receptors for active forms of vitamin D in the body. Vitamin D is actually related to steroid hormones and has many far-reaching effects on bodily functions from immunity to mood...way beyond its traditional role in helping to maintain strong bones.

Although the subject seems quite technical at first, many doctors (on our side!) are testing for SNPs as part of routine functional medicine testing as the tests are now widely available from private labs and relatively cheap.

Thanks for the reminder of 'First do no harm'....absolutely right, it's just easy to become impatient when we've been ill for so long isn't it!
If you are going through hell, keep going - Winston Churchill
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