MAF 878 Available - Anyone already using it?

[maryb]

Re rrr's post - I had the Hallpike manouvre done by an ENT consultant, unfortunately it caused me to suffer with a wrenched neck for 13 months, it does work if dizziness is caused by debris in the inner ear, but us delicate ME patients need very careful handling.

 

[Ember]

My damaged MAF 878 starter hasn't yet been replaced. In the meantime, I found this explanation of GcMAF illuminating:

 

[ukxmrv]

I'm not feeling very confident about the MAF878 for me. It was hard at the start because I entire family got the flu and I was really sick with it. I had no idea if the tiredness and extra sleeping was the MAF or not.

Something else has happened which is strange and I'm just mentioning it in case someone else has the same problem. I've had menstrual bleeding off and on for the past few weeks. Also woke in the night with what I think of as a progesterone surge. My neck was wet through. This used to happen when I was having IVF and ovulating. So strange to have it now. So hormones are all over the place. Emotionally it's been very hard.

Anyway, I'm coming to the end of the first month's supply. I'm going to try and make a new batch from the old as I cannot afford to get another batch right now.

There have been none of the intense immune system activation that I felt with the MAF878. Also none of the good days at all this month.

I may be wrong of course and I'll keep reporting.

 

[Elisa]

Hi All,

I worked up to a couple teaspoons but the depression got so severe I had to stop. I am certain it was the MAF 878 because ( i started and stopped, started and stopped) the severity of depression resolves in a few days...so I am so bummed.

Has anyone researched the Macrophage theory of depression - I did after getting this troubling side effect. I guess its from the macrophages activating. It helped with a number of other issues so I just dont know what to do.

http://www.ncbi.nlm.nih.gov/pubmed/1943879

Oh and the interferon that is also activated is an issue for depression too.

I can generally deal with the depression of this illness - but this was extreme - "can't take anymore" type depression.

I thought maybe I should try it at night instead - but honestly, this illness AND severe depression that severe is almost unbearable.

Any ideas on all this?

Oh, I have been having massive chills and sweats too and other unpleasant GI effects...but who knows whats coming from where.

I think I am going through an angry, had enough, po'd stage...just seem to be feed up - cause it so hard to get hopes up even a little and then take the nasty ride of disaapointment on down...

God Bless,

Elisabeth

 

[Forebearance]

Yikes. I'm so sorry to hear that, Elisabeth.
It sort of reminds me of what happened when I first started taking Vitamin D. It is a lot like a steroid, and even a tiny bit gave me that angry, PO-ed feeling. Roid rage. I have been feeling that way lately, now that you mention it.
With Vit D, I increased the dose super gradually and eventually the angry stage passed.

But that is nowhere near as hard as your depression sounds. It sounds awful!
I'm glad you stopped it.

Would you be able to take a drop of the MAF without the depression happening?

Fore

 

[ukxmrv]

Hi Elizabeth,

I'm not in a very good position to comment properly on the MAF878 as my whole family had the flu badly just after I started so the symptoms from the yoghurt were hard to tell apart from the flu.

Can compare my MAF878 to the MAF314 (I think) and I can see that on both I felt incredible irritability and anger. Intense frustration. There was some depression which stands out as it's very rare of me to feel like that.

The worst depression I have ever had was from Antibiotics though and the MAF wasn't as bad as that for me. Can quite understand the type of depression that leaves you unable to continue a treatment as that's what happened to me with antibiotics. Really sympathise as it's an insult to injury to try a new treatment and end up with further intense symptoms.

It does help for me to know if there is a light at the end of the tunnel. We don't know enough about the MAF's to determine when any one symptom will stop. I've kept a daily diary of both my MAF314 and MAF878 trials.

With the MAF314 I had an incredible immune reaction all through my throat, neck glands which was very intense. This hit on day 8 until about day 14 and I had flu symptoms off and on until I stopped the daily diary on day 51. Emotionally the horrible time was from Day 8 -12 and then again from day 32 - 35. When I look back the emotional was always with the intense flu-like.

I found that Benedryl helped me with the immune system symptoms and the emotional one so I am guessing that this was some sort of IRIS.

Don't know if the bizarre hormonal problems I have had this month (neck sweating like ovulation, bleeding off and on for 3 weeks) are due to the MAF878 or the flu. Had chills on both yoghurts which is blissful for me as I normally overheat at night. Being cold at night is a treat for me.

Can you tolerate Benadryl?

 

[Elisa]

Hi Forebearance!

Thank you so much for your feedback...it really helped alot to hear from you!

I had not had much depression at all until I started the MAF 878 - and even today I am feeling down - partly because I am so dissapointed by not responding to it. Its a total lack of confidence thing - that is unlike me in general plus the whole po'd thing. Its shameful - I wish I could shake it. And my fever is back - so that also makes me upset (have had this fever over 5 yrs).

I guess I am lost - just dont know how to navigate all this - never quite sure what to do.

I'm not sure I'm brave enough to try again - as the depression is starting up again and the fever. My current batch expires Aug 15 and I have been off it since July 22nd.

I am so grateful for your kindness Forebearance, I really appreciate your imput - especially because I know how sensitive you are and I am the same way.

I will report back - to let you know how I do!

God Bless,

Elisabeth

 

[Elisa]

Hi Ukxmrv,

Thank you so much for sharing your experience - especially how it is similar to mine. So kind of you!

The hormonal stuff is a nightmare - I am having shaking chills and severe sweats and cant tell if its a bug/infection or hormones - either way its really a nightmare. I already feel like I cant keep it together and then I become a puddle in front of others...aweful.

Keeping a formal diary of these reactions is a really good idea - I jot things down on my calendar - but often forget - so that could really help.

Unfortunately, I get a reaction to things and automatically think its just me - not the thing I'm taking. I cant seem to teach myself its NOT me - if you know what I mean.

I started the MAF 878 really, really slow - toothpick tip amounts and slowly increased - so to offset any kind of potential negative reaction - EXCEPT- one day after I had been in the ER for multiple fainiting spells beginning in my bed - I came home traumatized and said "to h*ll with it" and took 2 teaspoons (doubling what I had been on - which was one teaspoon). I felt really threatened by the loss of conciousness and felt I needed to be brave and step it up. So that may have caused the reaction too

I wonder if it is IRIS and how long does it last...

Thank you for the ideas and troubleshooting with me - its comforting to hear from you - I cant tell you how much it helps. Its so hard experimenting on your own.

I had used Benedryl in the past and maybe might try it again.

God Bless You Ukxmrv,

Elisabeth

 

[Xandoff]

Just following this thread and can't respond to everybody but I wanted to say that I can relate to that PO-ed feeling which is overwhelming when trying to navigate this life. On the injectible GcMAF at 25 ng ( I think) I don't have this feeling but I do have a mild start up of some of the symptoms that started when I first got this illness and didn't know what was happening.

A little off topic here but I got the "wicked" PO-ed feeling when I took Low dose Naltraxone (LDN) at 4.5 mg but I can tolerate and do benifit from LDN at 3.0 mg. Only a higher power knows why this is so, but I am glad I didn't give up on LDN. All of us are so different genetically.I actually titrated up from 1.5 mg of LDN to 4.5 and then went back down to 3.0 mg where I am helped by it. But I had a "rage" reaction at 4.5 and thought it was a hundred different things like supplements, life, family and my own failings to accecpt this illnesss.

I have resolved myself to believing that I have to get a little sicker to get well because I believe that re-starting your immune system is going to be as bumpy as when our immune system started falling apart. Insult to injury I guess. I do get more inflamation a day after GcMAF now, where I would have three or four good days in the beginning.

Fight the good fight and listen to your gut. Be kind to yourself when possible and above all manage your symptoms and needs. Easier said than done. Much easier. Wellness to all!

 

[Nielk]

Could this be the reason why GcMaf works especially well on intestinal issues?

http://www.eurekalert.org/pub_releases/2012-06/asfm-ibp061312.php

Intestinal bacteria produce neurotransmitter, could play role in inflammation



Researchers at Baylor College of Medicine and Texas Children's Hospital have identified commensal bacteria in the human intestine that produce a neurotransmitter that may play a role in preventing or treating inflammatory bowel diseases such as Crohn's disease.
"We identified, to our knowledge, the first bifidobacterial strain, Bifidobacterium dentium, that is capable of secreting large amounts of gamma-aminobutyric acid (GABA). This molecule is a major inhibitory neurotransmitter in the central and enteric nervous systems," says Karina Pokusaeva, a researcher on the study and a member of the laboratory of James Versalovic.
GABA is one of the chief inhibitory neurotransmitters in the human central nervous system. It plays a role in regulating pain and some pain relieving drugs currently on the market act by targeting GABA receptors on neural cells.
Pokusaeva and her colleagues were interested in understanding the role the human microbiome might play in pain and scanned the genomes of potentially beneficial intestinal microorganisms, identified by the Human Microbiome Project, for evidence of a gene that would allow them to create GABA.
"Lab analysis of metagenomic DNA sequencing data allowed us to demonstrate that microbial glutamate decarboxylase encoding gene is very abundant in intestinal microbiota as compared to other body sites," says Pokusaeva. One of the most prolific producers of GABA was B. dentium, which appears to secrete the compound to help it survive the acid environment.
In addition to its pain modulating properties, GABA may also be capable of inhibiting inflammation. Recent studies have shown that immune cells called macrophages also possess GABA receptors. When these receptors were activated on the macrophages there was a decrease in the production of compounds responsible for inflammation.
"Our lab was curious to explore if GABA produced by intestinal human isolate B. dentium could have an effect on GABA receptors present in immune cells," says Pokusaeva. Together with their collaborators Dr. Yamada and Dr. Lacorazza they found that when the cells were exposed to secretions from the bacteria, they exhibited increased expression of the GABAA receptor in the immune cells.
While the findings are preliminary, they suggest the possibility that B. dentium and the compounds it secretes could play a role in reducing inflammation associated with inflammatory bowel diseases.
The next step, says Pokusaeva is to conduct in vitro experiments to determine if the increased GABAA expression correlates with a decrease in production of cytokines associated with inflammation. GABAA receptor signaling may also contribute to pain signaling in the gut and may somehow be involved in abdominal pain disorders.
"Our preliminary findings suggest that Bifidobacterium dentium could potentially have an inhibitory role in inflammation; however more research has to be performed to further prove our hypothesis," says Pokusaeva.

###

Dr. Pokusaeva will participate in a live webcast media availability to discuss her research on Sunday, June 17, 2012 at 1:00 p.m. EDT. The webcast can be found online atwww.microbeworld.org/asmlive.
This research was presented as part of the 2012 General Meeting of the American Society for Microbiology held June 16-19, 2012 in San Francisco, California. A full press kit for the meeting, including tipsheets and additional press releases, can be found online at http://bit.ly/asm2012pk.
The American Society for Microbiology is the largest single life science society, composed of over 39,000 scientists and health professionals. ASM's mission is to advance the microbiological sciences as a vehicle for understanding life processes and to apply and communicate this knowledge for the improvement of health and environmental and economic well-being worldwide.

 

[beaverfury]

Ya, and this...
http://www.ncbi.nlm.nih.gov/pubmed/21855222

Macrophages activate cytokines and can induce sickness behaviour.
This could play hell with an autonomic system which is already a little touchy.


..But i dont really know. ..

 

[Sasha]

I've ordered some MAF 878 and am wondering if the questions that people had earlier in this thread about how to make the stuff have been answered - sorry to be feeble but the thread is now so enormous I'm a bit overwhelmed at the idea of reading the whole thing!

Can anyone link me to clear instructions and any other useful info (like how to tell if the stuff has gone off, how/whether to titrate up the dose, etc.)?

So grateful to Dr Enlander for making this available, including to those of us outside the US. What a star.

Edit: Actually, have now read the thread (didn't think I'd be able to!). What mixed experiences everyone is having - thanks to all those who have posted.

 

[olliec]

I saw Dr Enlander in London this week, and got my first starter pot of MAF878. He said they're aware of shipping problems and working hard to improve things. As I'm casein intolerant, he told me to do it with goat's milk, yoghurt and kefir. I'm very grateful to him for his efforts to bring this treatment to patients, even if it only helps a %, it's worth it.

My understanding is that Dr Enlander has a friend/colleague in London in the UK who keeps stock of the starter, and the other supplements he uses, so for anyone nearer London it may make sense to source them that way, rather than from New York.

 

[Sasha]

Someone with some scientific background wrote that about Gcmaf in probiotic form:

'From all I know, macrophages wouldn't survive the environment in the intestine and wouldn't be able to cross the lining of the gut. look at it this way, the stomach is adapted to prevent microorganisms and toxins in our food from entering the body and mostly it does a very good job of it. Only a very few can cause us illness. 99% + cannot. A macrophage is a cell type produced by the immune system that within the circulatory system targets a very specific type of microorganism. It has no outer defences that enable it to survive anywhere else outside the body.'

I'm not a scientist but was wondering if anyone had any thoughts on this. Has Dr Enlander or Dr Cheney made any comments on how the Gcmaf in yoghurt survives the environment in the intestine and crosses the lining of the gut? Many thanks

I just watched Prof Ruggiero's video here:

http://cfspatientadvocate.blogspot.co.uk/2012/08/professor-marco-ruggiero-on-maf-314.html

in which he explains that a lot of the production of macrophages happens in the pharynx (throat) region when the MAF is in the mouth - and that when the MAF gets to the stomach is it protected by the casein in the milk and the fibre from the high-fibre food you're advised to have eaten. Once through the stomach it goes onto the gut in which it helps set up a healthy colony of bacteria which also produce MAF.

That's my remembered and sketchy and probably a bit wrong understanding but I recommend you watch the video!

 

[Sasha]

new updated instructions stronger starter kit

Use 1 gallon wide mouth glass jar

add complete jar of STARTER KIT
then add
one pint of yoghurt
one quart kefir
one pint whole cream

I think that's full cream milk, not cream, but that looks like 4 pints (half a gallon) of stuff plus whatever the volume of starter kit is.

Does it expand as it cultures or something? I'd rather not have to cram a gallon jar into my fridge if i don't have to. Am wondering if I can get away with something smaller.

And what's the "wide mouth" on the jar for? Just so you can stir the contents easily?

 

[maddietod]

It swells a bit while culturing, so a half gallon jar won't be quite big enough. And yes, wide mouth for stirring.

You can make it in a few smaller jars, or pour it into smaller jars before moving the yogurt into the fridge.

 

[Sasha]

I did my Day Three stir of my first-ever batch of MAF 878 last night and it smells like yoghurt (good sign!) but is very liquid, like milk or single cream.

What should it be like when it's finished on Day Five? I thought it was supposed to end up fairly solid, but can't remember where I read that. How will I know when it's ready? Just because it's the end of Day Five?

 

[ukxmrv]

Mine went quite gluggy and lumpy but I think that may be used to the kefir I used. Stirring it makes it more liquid though.

 

[Sasha]

Mine went quite gluggy and lumpy but I think that may be used to the kefir I used. Stirring it makes it more liquid though.

I had imagined it ending up like soft cheese or something - maybe because that's my idea of what can last longer in the fridge. Oh well, maybe I'm not off target after all!

 

[ukxmrv]

My didn't end up like a soft cheese it was more liquid but lumpy. The MAF314 I had earlier was even more like a runny yoghurt.

I wonder if anyone who has MAF878 straight from Dr Enlander could let us know what that looks like.