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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Nice GcMAF transdermal cream from GcMAFplus.com in Hong Kong

Hip

Senior Member
Messages
17,858
One of the ME/CFS treatments I never got around to trying was GcMAF.

A poll on Phoenix Rising showed that GcMAF treatment makes a major improvement in nearly a third of ME/CFS patients who try it (a "major improvement" was defined in that poll as moving up at least one level on the ME/CFS scale of: very severe, severe, moderate, mild, remission).

And there's one account on this forum of a severe bedbound ME/CFS patient being completely and permanently cured after 1 year taking GcMAF.


So a couple of months ago I decided to buy some GcMAF, to try it out. I opted for a transdermal cream, rather than GcMAF injections, as the cream is easier to use.

The product I bought was the GcMAF Natural Cream, from www.gcmafplus.com, a company based in Hong Kong. This product is relatively cheap: $85 for a jar of cream which provides 70 doses at 21.4 ng GcMAF per dose.

Although this is the lowest dose product they sell (stronger products are more expensive). But ME/CFS patients are often sensitive to even small doses of GcMAF, so I wanted to start with the lowest dose.

The people at GcMAFplus told me via email that their "independent tests showed upwards of 60% absorption rates" for the transdermal cream. So the potency of this cream is not far behind that of GcMAF injection.

The GcMAF product arrived in a professional-looking pump dispenser jar:

GcMAF Natural Cream From GcMAFplus
GcMAF Natural Cream from www.gcmafplus.com.jpg

When you press down the large white button on the top of the jar, it dispenses a precise amount of cream via the hole in the center of the button, and this cream contains your 21.4 ng dose.

I started using this GcMAF cream at one pump dose daily. I had no major side effects.

However, after about a week I started noticing worsened mental health. So for the moment I've decide to reduce my dosing to once or twice a week. But in my case, I often find immunomodulators (like GcMAF) affect my already flimsy mental health. So this may not be an issue for other ME/CFS patients.


Anyway, I am writing up my initial experience with this GcMAF cream from Hong Kong, because it comes across as a professionally-made product, and the GcMAFplus website looks organized and professional too. Plus the when I contacted the company by email, I received a quick and competent reply, so their communications seem good.


Other places I considered when looking to buy GcMAF included these suppliers: GcMAF AsiaSaisei MiraiNovel Health SolBio Japan. But in the end I opted for the GcMAFplus product.
 
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Sushi

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A poll on Phoenix Rising showed that GcMAF treatment makes a major improvement in nearly a third of ME/CFS patients who try it (a "major improvement" was defined in that poll as moving up at least one level on the ME/CFS scale of: very severe, severe, moderate, mild, remission).
I am one of those who had major improvement from GcMAF injections, but, when I tried a good quality cream, the only effects I had were negative (inflammation). I was very disappointed--but maybe this brand is different.
I started using this GcMAF cream at one pump dose daily. I had no major side effects.

However, after about a week I started noticing worsened mental health. So for the moment I've decide to reduce my dosing to once or twice a week. But in my case, I often find immunomodulators (like GcMAF) affect my already flimsy mental health. So this may not be an issue for other ME/CFS patients.
With my experience dosing injections I would not be satisfied with "one dose suits all" dosing. Even tiny alterations in the injection dose made a huge amount of difference. I don't know if there is a way that you could lower the dose (since it is a pump) but if it were me, that is what I'd try.
 

Hip

Senior Member
Messages
17,858
I bought from them an year ago and used it. I did not see any improvement in my fatigue or general condition. So I stopped using it. But their customer service is quite good.

When I emailed them, I asked their advice on the appropriate dose level for ME/CFS, and they said:
The 1,500ng cream [the one I bought with the 21.4 ng dose] is quite weak and generally used by customers for general preventative or very minor issues.

The higher strength products which contain much more GcMAF are often needed to supplement enough to override a compromised system and to aggressively stimulate a response. Our 2 strongest creams below are generally used for this type of purpose twice daily depending on the severity of your issue:

https://www.gcmafplus.com/shop/skin-cream-15000ng

https://www.gcmafplus.com/shop/super-strength-15-000-000-000ng
These stronger products provide 214.3 ng per dose and a massive 214.3 mg per dose respectively.
 

Hip

Senior Member
Messages
17,858
I don't know if there is a way that you could lower the dose (since it is a pump) but if it were me, that is what I'd try.

At the moment, I am lowering the dose by applying a one-pump amount only once every 3 or 4 days (rather than applying every day as I did initially).

I understand that macrophages activated by GcMAF have a half-life of 6 days. So this suggests the effects of a dose of GcMAF will last for a few weeks before fading. So from that point of view, I think you can space out your doses over a few days, if you want reduce the amount of GcMAF you take.



I am one of those who had major improvement from GcMAF injections, but, when I tried a good quality cream, the only effects I had were negative (inflammation). I was very disappointed--but maybe this brand is different.

I was concerned that the GcMAF might ramp up inflammation. I've read that it can do this in ME/CFS patients who have lots of inflammation. But I did not notice any inflammatory effects from the cream I took.

I did however notice that my lax leg and pelvic muscles seemed to nicely firm up after about a week on this GcMAF, which is intriguing (the effect then disappeared once I reduced my GcMAF dosing to taking it once evert 3 or 4 days).
 

Sushi

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I understand that macrophages activated by GcMAF have a half-life of 6 days. So this suggests the effects of a dose of GcMAF will last for a few weeks before fading. So from that point of view, I think you can space out your doses over a few days, if you want reduce the amount of GcMAF you take.
Yes, we used to inject only once a week.
But I did not notice any inflammatory effects from the cream I took.
It took time to reveal itself--quite a few weeks. I had the same thing from the injections and had to stop for a while and then lower my dose.
 

Hip

Senior Member
Messages
17,858
It took time to reveal itself--quite a few weeks. I had the same thing from the injections and had to stop for a while and then lower my dose.

That makes sense, given the long half-life of the activated macrophages: GcMAF doses will then produce a cumulative effect after a week or two of dosing.


Unfortunately for me, several of the "must try" ME/CFS treatments seem to cause me adverse mental health effects very quickly, forcing me to stop them before they get any chance to work for my ME/CFS. This has happened to me with Valcyte, tenofovir, DCA, and oxymatrine (though I was eventually able to try this). I would love to try these things, but can't, not from physical side effects, but from unpleasant mental ones.

And it seems GcMAF may be another treatment to add to that list, as at the moment I've been forced to go down to a very low dose in order to avoid mental health side effects.
 

Sushi

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Unfortunately for me, several of the "must try" ME/CFS treatments seem to cause me adverse mental health effects very quickly, forcing me to stop them before they get any chance to work for my ME/CFS. This has happened to me with Valcyte, tenofovir, DCA, and oxymatrine (though I was eventually able to try this). I would love to try these things, but can't, not from physical side effects, but from unpleasant mental ones.
I wonder if there is a common element involved that is behind these responses?
 

Hip

Senior Member
Messages
17,858
I wonder if there is a common element involved that is behind these responses?

It might be related to increased immune activation. An increasing number of mental health conditions are being linked to inflammation in the brain: depression, bipolar, anxiety, OCD and schizophrenia have all been linked to neuroinflammation.

So if mental health symptoms are underpinned by brain inflammation, then any treatment which increases the immune response (in order to fight off infection) may also ramp up immune activation / inflammation in the brain, and thereby worsen mental symptoms.

I tend to find it is immunomodulator drugs and supplements which have mental health side effects. Even immunomodulator supplements such as beta sitosterol, astragalus, transfer factor, Epicor (Saccharomyces cerevisiae) all cause me to become substantially more depressed within an hour or two of taking them.
 

heapsreal

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It might be related to increased immune activation. An increasing number of mental health conditions are being linked to inflammation in the brain: depression, bipolar, anxiety, OCD and schizophrenia have all been linked to neuroinflammation.

So if mental health symptoms are underpinned by brain inflammation, then any treatment which increases the immune response (in order to fight off infection) may also ramp up immune activation / inflammation in the brain, and thereby worsen mental symptoms.

I tend to find it is immunomodulator drugs and supplements which have mental health side effects. Even immunomodulator supplements such as beta sitosterol, astragalus, transfer factor, Epicor (Saccharomyces cerevisiae) all cause me to become substantially more depressed within an hour or two of taking them.

Have you tried immunovir/isoprinosine?
Inosine derivatives in some research shows the increase in uric acid it can cause, can act like an antioxidant in the nervous system and reduce inflammation. But i guess it can increase other aspects of the immune system they could have negative effects??

Thanks for the GcMaf link. I was only looking into it a few weeks ago and from what i could find it was priced out of my league.
 

Marylib

Senior Member
Messages
1,157
I just found a new source for isoprinosine. Waiting to try it out again when I feel "stable." It is only of those things that once got me out of bed. This one is from Poland via Ukraine via Amazon. I may decide once again that it's not worth the price because I am loving my calcium channel blocker at the moment.

I think Derek Enlander in the US is back in business with GcMaf products, but it has somehow never appealed to me.
 

Hip

Senior Member
Messages
17,858
Have you tried immunovir/isoprinosine?

I've only tried the supplement version, inosine. This is also an immunomodulator that I've found can worsen depression, though not as much as other immunomodulator supplements like astragalus or Epicor.



Thanks for the GcMaf link. I was only looking into it a few weeks ago and from what i could find it was priced out of my league.

Normally GcMAF is still pretty expensive for the full-dose product; but because I believe ME/CFS patients are often sensitive to the effects of GcMAF, that's to our advantage, as it means many of us will need to use a low-dose product, which is much cheaper.
 

mrmichaelfreedmen

Senior Member
Messages
156
Location
Australia
Have you tried immunovir/isoprinosine?
Inosine derivatives in some research shows the increase in uric acid it can cause, can act like an antioxidant in the nervous system and reduce inflammation. But i guess it can increase other aspects of the immune system they could have negative effects??

Thanks for the GcMaf link. I was only looking into it a few weeks ago and from what i could find it was priced out of my league.

Long term elevated uric acid can cause bone marrow inflammation and fractures. This has been reported by the NIH, will attempt to find the link and post.

Not the one, but interesting/concerning to find a reported increase with il6 in relation to acute increased uric acid - https://www.ncbi.nlm.nih.gov/pubmed/28786993
 
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heapsreal

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Long term elevated uric acid can cause bone marrow inflammation and fractures. This has been reported by the NIH, will attempt to find the link and post.

Not the one, but interesting/concerning to find a reported increase with il6 in relation to acute increased uric acid - https://www.ncbi.nlm.nih.gov/pubmed/28786993

I know elevated uric acid is a risk factor but regular blood tests ive had when on immunovir, my uric acid levels have always been within normal range. Maybe why its recommended to vary the dose and have off days. If someone has elevated uric acid from immunovir, it would be an indication to stop treatment.

There are several dosage regimes from cfs drs that are designed to minimize elevated uric acid levels. Dr Cheney has an easy to find protocol online.
 

mrmichaelfreedmen

Senior Member
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156
Location
Australia
I know elevated uric acid is a risk factor but regular blood tests ive had when on immunovir, my uric acid levels have always been within normal range. Maybe why its recommended to vary the dose and have off days. If someone has elevated uric acid from immunovir, it would be an indication to stop treatment.

There are several dosage regimes from cfs drs that are designed to minimize elevated uric acid levels. Dr Cheney has an easy to find protocol online.

I believe Paul uses a sporadic dosing schedule with Inosine to address the body's adaption to the immunomodulator. Increased uric acid levels remain a risk factor for the compound, or for those who maintain a high purine diet. Increased IL-6 is yet another risk factor related to increased uric acid plasma levels.
 

Judee

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Increased IL-6 is yet another risk factor related to increased uric acid plasma levels.

@mrmichaelfreedmen, thank you for putting these posts about IL6 and raised uric acid. I've been using oxymatrine with no problems but then added inosine. At first I was getting good results from it but then it quickly turned on me and was exacerbating my ME/CFS to probably the worst that it has ever been. My heart pain was increasing and I was getting what I call "heart tiredness" to the point that I was having dreams about it.

I used what you said and found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4677779/ and then did an internet search on IL6 polymorphisms. I have the one they talk about shown here: https://www.snpedia.com/index.php/Rs1800795
Mine is rs1800795 GG. It helps me to understand what is happening so I'm going off of the inosine and planning on doing things to lower my uric acid levels. It's so frustrating though because at first I was really improving so that must have been the initial "cardiac protection" that study talks about.

Thanks.

Sorry everyone else for sidetracking this thread.
 

Hip

Senior Member
Messages
17,858
@Hip what are your thoughts on the GcMAF now?

I've stopped using it for the moment because of the mental health side effects. But I am prone to getting those from meds, and I don't think this will be an issue for other patients. You might like this story of a severe bedbound ME/CFS patient going into remission after a year on GcMAF.
 

Hipsman

Senior Member
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542
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Normally GcMAF is still pretty expensive for the full-dose product; but because I believe ME/CFS patients are often sensitive to the effects of GcMAF, that's to our advantage, as it means many of us will need to use a low-dose product, which is much cheaper.
I am hesitant whether to choose 8000ng or 1500ng one, but 1500ng should be enough to try higher doses if say after two weeks of dosing 21.4 ng daily yields no effect, the dose can be increased by pumping say 4-5 times daily till it runs out. Should be enough to definitely know whether you respond to GcMAF. I read that carlystar13's improvement began after 13-17 days of starting and she started with very low dose.
 

Sushi

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I am hesitant whether to choose 8000ng or 1500ng one, but 1500ng should be enough to try higher doses if say after two weeks of dosing 21.4 ng daily yields no effect, the dose can be increased by pumping say 4-5 times daily till it runs out. Should be enough to definitely know whether you respond to GcMAF. I read that carlystar13's improvement began after 13-17 days of starting and she started with very low dose.
Please be cautious as GcMAF can create an escalating inflammatory response over weeks and months. I realize that the transdermal route is different from the injected route but I had to reduce my injected dose from 50ng to 25 after several months due to inflammation. I also got progressive inflammation from a transdermal cream.