GcMAF, inflammation and individual response

[serg1942]

(In response to this post:http://forums.phoenixrising.me/show...yone-taking-it&p=190689&viewfull=1#post190689)

Hi guys,

Berthe, may I ask where are you in Spain? I live in Valencia, and in august will stay a few weeks in Cdiz Are you by chance nearby to any of these cities? Oh!, BTW, I will be for a few hours in Madrid next 16th, and I will go to a bar to hang out with some friends for a while, so you'd be very welcome to join us if you live there!

Joey, I reduced the dose of B12 from 5 mgs injected daily down to 5 mgs injected every 4 days, and within 3 weeks I am back to where I was. I feel better in general. My mornings are much better, my digestion is much better, brain fog is much better, my endurance in much better, and my energy is higher as well. I would say that the more noticeable change is that I have not as many bad days as before. Actually I have very few bad days, plus, they are not as bad as they used to be. As far as the good days, they are not as good as Id like though, but they are more often than before.

Its quite frustrating actually, as I am in a sort of in a limbo I am better enough to get bored stiff at home, but not well enough to even think of having a "decent" kind of "life" outside, more than going out for a few hours to do some errands, to the gym, or to hang out with friends, but always feeling sick

Interesting your theory about inflammation and response to GcMAF. My C4a from before I started GcMAF was 2840. My cytokine profile was perfect though. Remember I am on 4.5 mg of LDN, and at this point I think it is helping a lot with inflammation, as I have not felt any sign of inflammation that I can tell..

I re-tested my C4a a few days ago, and I will have its results on Friday of next week. I will let you know how it comes out.

Best,
Sergio

 

[mojoey]

Hey Sergio,

Good to hear from you and great to hear that you figured out what was causing some of your issues. Interesting that high dose methyl b12 doesn't get along with gcmaf.

Did you re-test your c4a when you were experiencing the increased side effects? i think timing is very important because c4a tends to change very rapidly. It is a great indicator of what is going on at the very time that it is taken. If you tested it before you dialed down the dose, I would think that your c4a went up during that time. If you re-tested after the adjustment, I would think that your c4a would be more or less near baseline. However, I haven't seen any re-test results from the "low c4a" group besides Leonora, so that's just a hunch. I take no pride in my reasoning... I just want us to get closer to the truth as soon as possible. If we can have one marker to determine whether to amp things up or dial things down, that would be so helpful for patients that are given willy-nilly dosages and being thrown nexavir, b12, and antibiotics to see what sticks.

I've been thinking that a potent immune modulator to dial down the complement and cytokine response is necessary regardless of what your c4a baseline is, and LDN may make a lot of sense in that role indeed.

 

[Berthe]

Hi Serg,

I'm in Marbella for the moment. Unfortunatelly I have to leave at the 13th of July for Belgium. When everything works out fine at home (with my children and their university and school) I perhaps return in August for a few weeks. We'll keep in touch because we could meet somewhere in the middle (Cadiz-Marbella) or you could come over to Marbella. Anyway... enough of topic ;-)

Do you think LDN would be a good idea to lower/diminish/decrease the inflammation caused by the MAF? I could give it a try.

About closing the calcium ionchannels my neurologist told me Lyrica was also of great help.

Love,
Berthe

 

[serg1942]

Hi Joey,

I do appreciate you trying to figure out whats going on with people taken GcMAF, and also think that your observations may be accurate

No, unfortunately I had my C4a re-tested a few days ago as part of a complete blood panel I ran in order to bring the results to KDM next week. But I was already better after having lowered my B12 dose, so maybe it comes out (up??????????) as it was although it was high anyway, though not as much as others-.

Oh!, what KDM is prescribing is Hydroxo B12, not Methyl... And I think he does it b/c HB12 has been shown to neutralize peroxynitrates.

Berthe, yeah, well see. Sure, maybe we could meet some way in between. Marbella is not very far away from Cdiz. Also, I will be in Brussels from the 17th t the 21th, so maybe we could meet there as well? Dont worry, just a suggestion, if it coincides that we are in the same place at the same time and feel up to it! ;-)

Yes, of course LDN could be making a great job maintaining low the inflammation caused by GcMAF... But I'm also concerned about the possibility of it being preventing GcMAF from fully working... I think I will have to wait till the next tests results I hope KDM prescribes in order to have an answer for this...

Un abrazote,
Sergio

 

[Spring]

Oh!, what KDM is prescribing is Hydroxo B12, not Methyl... And I think he does it b/c HB12 has been shown to neutralize peroxynitrates.

Hi Sergio,

What did you mean by this? Did you take Methylcobalamide? I'd like to know because I'm thinking of lowering my B12 because of your experience to see if I'll do better than.

Thanks!
Spring

 

[mojoey]

Hi Spring, I believe he is referring to this:

Hydroxocobalamin (cobinamide), a unique form of vitamin B-12, is a potent nitric oxide (NO-) scavenger. It is the only form of vitamin B-12 that effectively neutralizes the NO- molecule. Hydroxocobalamin is the preferred form of vitamin B-12 required to break the NO-/ONOO- vicious cycle of cellular damage. (147-149)

The NO-/ONOO vicious cycle is Martin Pall's theory on the etiology behind CFS. Basically it results in way too much peroxynitrite and nitric oxide (the precursor to peroxynitrite). That's why hydroxy b12 has been advocated by Cheney and many other docs as the preferable form of b12.

Methyl b12 may be superior for some who can tolerate it because it is the most bioactive form and it penetrates the blood brain barrier, but due to the same reasons it can be terrible for others. The most dangerous possibility is that it can mobilize mercury to and from the brain. However, others say that toxins are already causing holes in our BBB and other crucial barriers such as our gut lining, so even without methyl b12 mercury and other heavy metals are getting transferred back and forth, so the methyl b12's benefits outweight the costs. Many patients have said that methyl b12 combined with active folate is the only thing that has made a noticeable difference in their symptoms (this is the crux of Freddd's b12 protocol).

 

[Susanne]

In response to this post:http://forums.phoenixrising.me/show...yone-taking-it&p=190304&viewfull=1#post190304

that is a high starting dose, from what i hear. it used to be a normal starting dose, but lately kdm has patients starting at 0.20 ml. i would ask him if i could drop down to that dose, if i were you.

Rrr - thank you for the response - my daughter has now decided to lower her dose of Gcmaf from 0,50 to 0,20 and she hopes it helps.

Her sleep last night was better, she slept longer, and had less vivid dreams, so that is a good sign that things are improving, either due to the lower Gcmaf, or due to decreased inflammation, or both - we will know when she does the next tests in August.

Susanne

 

[Sushi]

No, unfortunately I had my C4a re-tested a few days ago as part of a complete blood panel I ran in order to bring the results to KDM next week. But I was already better after having lowered my B12 dose, so maybe it comes out (up??????????) as it was although it was high anyway, though not as much as others-.

Un abrazote,
Sergio

Joey,

It is interesting that you said that C4a changes rapidly. For many of us, out initial C4a was tested at a high-stress, high fatigue time when we were feeling awful--i.e. at our first appointment with KDM which meant, for me, having just flown the Atlantic! This is another factor to consider when looking at our initial test numbers.

And Berthe,

I am also doing better with a much lower hydrox B12 dose. The full recommended dose was really hard for me.

And Re: LDN, I have been compromising as I suspect it really does reduce inflammation as neither Sergio nor I have noticed inflammation while taking GcMAF and LDN together. To minimize the chance of the LDN interfering with GcMAF, I have been skipping the LDN doses on the nights before and after my GcMAF injection.

Best,
Sushi

 

[serg1942]

Hi Spring,

Joey's reply is very accurate. I think KDM is not giving HB12 in order to activate the methylation cycle as I believe he thinks it is a secondary problem that will be fixed after other stuff is improved.

Yes, lowering B12 has DEFINITELY allowed my body to get back to the track of the improvement I was just before starting the injections So I think it is worth trying But it took me about 2-3 weeks to notice the difference, so this is important to bear in mind.

Joey, with all due respect for Freddd, I dont think it is fair to describe his proposed approach as a protocol Some people is comparing his proposed approach with Richs, and I think this is 1- unfair and a nonsense and 2- dangerous: Unfair because Richs protocol is the result of years and years of thorough study (supported by the work of very knowledgeable experts in multiple areas, and hundreds of scientific papers), always trying to err on the side of safety; Dangerous because methyl B12 is not just the only substance able to methylate the inorganic mercury, but also because it does stimulate the detoxification system way too much for many PWCs, and the result can be disastrous

(Just wanted to express my opinion on this, I know you have just referenced it in order to contextualize the B12 stuff It has nothing to do with you. I just think what Freddd proposes is dangerous, and wanted to give my opinion, again, from my deep respect for him. I am sure his intentions are the best ones).

Best!
Sergio

 

[slayadragon]

(In response to this post:http://forums.phoenixrising.me/show...yone-taking-it&p=190689&viewfull=1#post190689)


Joey[/U][/B], I reduced the dose of B12 from 5 mgs injected daily down to 5 mgs injected every 4 days, and within 3 weeks I am back to where I was. I feel better in general. My mornings are much better, my digestion is much better, brain fog is much better, my endurance in much better, and my energy is higher as well. I would say that the more noticeable change is that I have not as many bad days as before. Actually I have very few bad days, plus, they are not as bad as they used to be. As far as the good days, they are not as good as Id like though, but they are more often than before.
Best,
Sergio

This does not surprise me one bit. 5mg of injected B12 (whether hydroxy or methyl) is a lot! Stirring up toxins at that rate is stressful on the body, especially on the intestinal tract. The body (I believe) does most of its detox at night, and with fast detox mornings indeed are harder.

I'm guessing you must be taking other things, like Metafolin?

It sounds to me like you're in a pretty good situation to keep making progress.

 

[mojoey]

Hey Sushi,

Yes that is true. However, i'm not sure c4a reacts to stress or fatigue. In fact stress triggers cortisol which may suppress inflammation. Persistent stress is known to lower immunity, thus allowing pathogens to run amuck. Elevated c4a may trigger reactivation because certain viruses thrive in increased inflammatory terrain. Different paths to the same result.

When I say it changes rapidly, I'm referring mostly to toxic exposure. Shoemaker's c4a rose to 100,000+ when he was in water-damaged buildings. As slayadrogon mentioned, the large amounts of mb12 were probably triggering a ton of detox, which in and of itself could have kicked up the c4a for Sergio. Sergio, I'd be curious to hear if you were able to tolerate 5mgs/day of mb12 before the gcmaf.

I've read nothing about c4a being affected to variations in stress or fatigue. If it was, however, that would be a huge confounding variable which would essentially chuck the usefulness of this biomarker in determining anything about gcmaf

 

[Tony]

I'm not on GcMAF but am on Nexavir. Also Hydroxo B12 daily for some years now (a low dose daily of 0.07ml of 10mg/ml strength). Any more B12 than that and I have less energy. I much prefer the small dose daily than larger amounts once per week or bi-weekly.

Back in Sept '09 my c4a was 797. I started KDM's ab's and prob's protocol in December '09 and Nexavir in January 2010.
My c4a at June 2011 was 8279...some jump!

But I've certainly improved this past year. Overall about 5%, feeling much less sick overall and more able to do things, like go out at night more often...

 

[anniekim]

Excuse my ignorance, but i take it a high levels of C4a is bad? Thank you

 

[Spring]

Excuse my ignorance, but i take it a high levels of C4a is bad? Thank you

Normal range of C4a is: 20 -1400 ng/ml

No thanks, we're here to ask questions and answere.

 

[Spring]

I wonder how fast C4a respondes to moldy environments, as I slept at the Eurovolley center two nights and spend most of those days in the hotelroom before the blood was drawn!!! Maybe that's the missing link!

(Didn't pay attention to mold at the hotel, so don't make too much out of this)

 

[mojoey]

Spring a lot of patients stay at the eurovolley and a lot of patients are coming back with pretty low c4a so i do not think that's the driving factor

 

[Spring]

Hi Mojoey,

I just recieved my PrPc. It is 10,64. This is just in the reference range given by Red Labs. On an explanation form from Himmuntas they say the index should be over 12. I don't know what other doctors use, but if you want to follow KDM's index it must be 12-100. I can send you the form from KDM but it is in Dutch, but maybe another patint recieved this information on PrPc in English.

Other outcomes were:
IL-10 mRNA 266 (10-80)
TGF-beta1 mRNA 88 (0-30)
TNF mRNA 18 (0-15)

Any help in figuering out what this means?

My nagalase was not included, but I will call Himmunitas monday as Red Labs said the result was sent to them.

 

[kaffiend]

I've read nothing about c4a being affected to variations in stress or fatigue. If it was, however, that would be a huge confounding variable which would essentially chuck the usefulness of this biomarker in determining anything about gcmaf

I'm not sure if people are aware of this study:

Complement activation in a model of chronic fatigue syndrome

Sorensen, B. et al, 2003

Background: A need exists to identify biological markers in chronic fatigue syndrome (CFS). Objective: To use an exercise and/or allergen challenge to induce the symptoms of CFS and to identify a biological mark- er that correlates with these symptoms.

Methods: Patients with CFS (n = 32) and age-matched, normal control patients (n = 29) exercised for 20 minutes on a station- ary bike at 70% of their predicted max work load (Watts). Patients from each group with positive skin test results were also challenged with intranasally administered relevant aller- gens. Symptoms were recorded for 2 weeks before and 1 week after each challenge, using 3 different instruments. Blood sam- ples were taken before, and 0, 1, 6, and 24 hours after chal- lenges. Levels of complement split products, cell-associated cytokines, and eosinophilic cationic protein were measured. Mean preexercise and postexercise symptom scores were eval- uated for each group.

Results: Exercise challenge induced significant increases of the complement split product C4a, but not C3a or C5a, at 6 hours after exercise only in the CFS group (P < .01), regardless of allergy status. Mean symptom scores were significantly increased after exercise through the use of a daily diary (P < .03) and a weekly diary (P < .01) for the CFS group only. Mean scores for the Multidimensional Fatigue Inventory cate- gories reduced activity and mental fatigue were signifi- cantly increased in the CFS group only (P < .04 and P < .02, respectively).
Conclusions: Exercise challenge may be a valuable tool in the development of diagnostic criteria and tests for CFS. Estab- lishment of a role for complement activation products as markers or participants in production of illness require fur- ther study. (J Allergy Clin Immunol 2003;112:397-403.)

 

[mojoey]

This is interesting. However since this study is from 2003 I was curious why no single cfs specialist, including the pacific fatigue lab, tests for c4a during exercise stress tests?

From a more recent 2010 study on PEM:

Results. Both submaximal exercise and self-paced, physiologically
limited exercise resulted in postexertional malaise in people with
ME/CFS.

However, neither exercise bout altered elastase activity
IL-1? or complement C4a split product levels in people with ME/CFS or
healthy sedentary control subjects (P?>?0.05).

Postexercise complement C4a level was identified as a clinically important biomarker for
postexertional malaise in people with ME/CFS.

So the results are a bit murky, certainly enough to put a serious wrench in the theory that c4a wouldnt be shifted by a particularly active trip.

However, given that a lot of patients' baseline c4a are in the moderately low 1000-3000 range, if they retest when they're feeling worse and find that it goes up dramatically it's still a very important clue i think.

 

[Susanne]

Other outcomes were:
IL-10 mRNA 266 (10-80)
TGF-beta1 mRNA 88 (0-30)
TNF mRNA 18 (0-15)

Any help in figuering out what this means?

Hi Spring
I`ve had a look at those 3 test results - for comparison my daughter's test results:

IL-10 mRNA 88 (10-80)
TGF-beta1 mRNA 27 (0-30)
TNF mRNA 6 (0-15)

I noticed that your test results are around 3 times the test results of my daughter, so your level is higher but somehow the pattern is the same.

My understanding is that: IL-10 is anti-inflammatory, and it can be induced by TGF-Beta.

TNF is inflammatory and it is released by activated macrophages, T lymphocytes and other immune cells in response to infections. TNF induces Nitric Oxide.

TNF is a TH1 cytokine, IL10 is a TH2 cytokine. IL-10 can inhibit TNF.

TNF and IL-10 are produced for instance when macrophages are activated by lipopolysaccharide (LPS - endotoxins).

My daughters test report also showed increased soluble CD 14. According to the redlabs website sCD14 levels are elevated in inflammatory bowel disease, Crohn's disease, Brucellosis, Lyme disease.

Susanne