Maf314 Anyone in the NW of England have it and want to share?

[maryb]

Just wondering if anyone in the NW of UK is taking the Maf314 and want someone to share it and costs? Would like to try some, there seems to be some very generous people in the south of the country doing this.

 

[clive powney]

maryb,
I was thinking along the same lines as you, but as yet I don't know the criteria that Dr Enlander etc uses to signify that patients might do well on this. I would be ecstatic to be able to take a treatment that is treating something I could be measured for before I started and monitored as I progressed. I assume it is nagalase but there may be others. Not sure of where to get these tests either from a cost and accuracy perspective either?

 

[maryb]

Clive I think some people in the UK have just gone ahead and tried it!! I know what you mean about the benefits of having a scientific measure of whether it is working, but at this moment I don't know of anyone doctors doing this and using MAF 314 over here. Maybe some of the ME docs will be doing so soon, but at present the only ones I know of are the doctor in Austria/Ruggerio and Dr Enlander. And of course Dr Bradstreet is using the homeopathic version .
I think the doctor in Austria will do consultations via skype but there is still the problem of how to get blood tests done. This is a simple enough task for the well, but I don't even feel up to asking my GP if the nurse can do it, never mind sorting out Fedex ect. Maybe I will tomorrow

 

[snowathlete]

maryb, regarding the nagalase test, my wife did alot of phoning around around last week and what we discovered is that access to the test in the UK isnt too tricky.

Although it seems that the lab in belgium is the only one that provides the test, it seems like its fairly common practice for places like private hospitals in the UK to be able to offer the test themselves, and they obvious sub contract the lab in belgium to do the test.
this is good because it means that a local hospital will take your cash and your blood and they do all the fedex stuff etc.
I found online at least two private blood test companies who offer the test £160 or something one of them was...
My local BMI (Bath clinic) said they would do it and will give me a price this week. They also said that if i only wanted them to draw the blood (and spin it, freeze it etc) then the price was just £15 (i thought that was insanely cheap!) and i could arrange fedex myself.
We called Fedex and the price was just under £60, next day del., sent on dry ice.

So, i think its well worth having the test done first.

 

[allyb]

Thanks maryb,
I am interested in this, any trial is better than no trial. I am in the North West i have also been trying to contact you as you were asking about Famvier and i am currently on it, however i source it from America. Please feel free if you need/want to know anything else about it.
i think this thread is a good idea for us in the UK to get together to form ideas or even a trial group to pitch to doctors and get some sort of treatment like this GcMaf. we could set up a new GROUP up on Pheonix for those in the UK willing to join for support or anymore ideas.

Thank you snowathlete for information on bloods RE the nagalase test, a group would enable us to share ideas like this as they are most helpful. This joining together, locking forces, means this isn't just down to one person which for us, taking things on alone is a massive weight.
maryb and others i have quickly searched the internet for BMI hospitals as these could be hopeful for the nagalase test in the near future. as you mentioned NW maryb these are the hospitals in Lancashire but there are also BMI's in Manchester and yorkshire too.

BMI Hospitals:
Gisburn park hospital
The Beardwood hospital
The Beaumont hospital
The Highfield hospital
The Lancaster hospital

We could perhaps each ring a few BMI hospitals to enquire about the possibility of them taking our bloods so we could then send them off for the nagalase tests, and then collectively let everyone know how we get on in accuiring the possibility.

There is strength in numbers, and getting a big enough group together for potential trials for example, who knows where we may end up. Doctors will give us more of a chance when there are more of us to fight this case.
Suggestions are very welcome please, from any country, evryone pitch in, i would be very grateful, we need to move forward! Any knowledge on short cuts, doctors links or anything RE the GcMEF would be great

Kind Regards

allyb

 

[xrunner]

I had my nagalase tested at the ELN in the NL (it's the same lab Rich recommends for the methylation panel).
I had my dentist request the test.
I didn't bother asking my doc at the BS as they're currently not offering this treatment, nor they seemed interested at the time.
I went to Biolab in London and they did everything for me as they work closely with the ELN. I think you can find other labs across the UK where they can take care of the logistics for the test.
I had to go to Vienna to get the Maf as at present there's no one in the UK. Hopefully some CFS doctor over here will soon wake up.

It isn't critical to have the test for the Maf 314, in my opinion. It either works or it doesn't.
You'll find that out without a test. At the end of the day it's just a yogurt, it's action is short-lived hence you have to take some each day and you can dose as per your response if that's required. However there may be contra-indications in certain cases which are best discussed with the doctor.

 

[maryb]

Thanks for the interest, I'm having a bit of a wobbly time, took some new supplements on Sat??? so just being quiet at present I'll pm you allyb about the Famvir, thanks.
The bit I'm worried about with the MAF 314 is the level of inflammation I have, some of what I read links high levels with poor responses, sorry to sound thick but is nagalase related to inflammation? I can get the tests over in B with KdM but the thought of travel at present is daunting, ditto to Vienna so hence the question.

 

[ukxmrv]

I just went straight ahead and took the MAF314. Some patients are having their nagalase levels taken before they start. My last set of immune system (Th1/th2) tests were taken years ago and showed some high and some low. Don't have that test in a folder close to hand to be able to see exactly. What was possibly IRIS occured from around day 6.

I'm used to taking new treatments by myself so happy to take these risks. Would be better to have medical supervision but that's not easy in the UK.

 

[clive powney]

is there any decent info regarding what side effects can happen and when?
Any recommended NHS blood tests that can be done to monitor the usual i.e liver, kidney electrolytes etc.
Also any info on timescales that you may start to improve (what you might see ) or when it might be likely that there will not be any improvements?

I have taken loads of stuff like ukxmrv and even with the 3 or 4 questions answered above it can be quite daunting when things go wrong , or if nothing is happening and you continue to spend precious money and time when you are on your own.

 

[xrunner]

This video presentation by Dr KdM is the most comprehensive I've seen on GcMaf. Explains also side effects and when it is contraindicated.
http://cfspatientadvocate.blogspot.co.uk/2011/11/mt-sinai-mecfs-conference-de-meirleir.html

 

[Sushi]

The bit I'm worried about with the MAF 314 is the level of inflammation I have, some of what I read links high levels with poor responses, sorry to sound thick but is nagalase related to inflammation? I can get the tests over in B with KdM but the thought of travel at present is daunting, ditto to Vienna so hence the question.

Yes, inflammation can be a problem with GcMAF, so it is good to get a base level of things like inflammatory cytokines if you start taking it. Nagalase blocks the natural activation of macrophages in your immune system. Seems to be one of those intelligent tricks that pathogens have--produce something which will prevent your body from using its natural defenses.

Some of the reasons to test it: to have a baseline, to see if it is high (some think GcMAF will work better if it is high), and also to know when to go to a maintenance dose.

Sushi

 

[Sushi]

is there any decent info regarding what side effects can happen and when?
Any recommended NHS blood tests that can be done to monitor the usual i.e liver, kidney electrolytes etc.
Also any info on timescales that you may start to improve (what you might see ) or when it might be likely that there will not be any improvements?

I am not from the UK, but I wouldn't think the relevant tests would be offered by the NHS (unless you have a really good doc). Things like inflammatory cytokines, C4a, sCD14, nagalase etc.

People who do improve on GcMAF do so on varying doses and timescales, but generally it seems to take quite a long time to notice substantial differences--at least 6 months though many begin to detect changes at one or two months.

The side effects are not from GcMAF but from macrophages doing their job. Inflammation is one thing to watch, and also any other worsening of symptoms, may mean that you need a lower dose, or that you have to deal with some conditions before you can handle increasing your macrophages to this level.Doctors are learning that many ME patients do better with a quite low dose--at least in the beginning months.

Sushi

 

[maryb]

Thanks Sushi sounds like a nagalase test would be a good one to have before I think about the GcMaf or Maf 314.
Strange that KdM didn't do it in the initial range of tests?

 

[Sushi]

Thanks Sushi sounds like a nagalase test would be a good one to have before I think about the GcMaf or Maf 314.
Strange that KdM didn't do it in the initial range of tests?

Are you sure he didn't? The test wasn't perfected when I first went (Jan 11), but since then he has tested it on each blood draw.

Sushi

 

[maryb]

I saw him last Nov 2010 - so obviously just missed it - damn

 

[clive powney]

After watching the video it seems that you need a nagalase test and a VDR responder test to see if this treatment may work. I am not sure how much these test cost as opposed to a blind trial of GcMaf or MAF314. If you don't have a positive test for both you may as well save your money as it seems from my understanding that even those with positive tests are not guaranteed results? Does anyone know the cost of :
1 nagalase test
2 VDR responder test
3 GCmaf treatment
4 MAF314

 

[Daffodil]

my doctor and many others do not use these tests before they precribe gcmaf. my doctor believes the nagalase tests is not yet reliable.

the cost of gcmaf treatment depends where you get the gcmaf. it varies greatly.

xoxo

 

[garcia]

my doctor and many others do not use these tests before they precribe gcmaf. my doctor believes the nagalase tests is not yet reliable.

I have to agree with this. IMHO the tests are useless. Whether a person responds therapeutically to GcMAF or not doesn't seem to depend on nagalase or VDR test results.

We have to remember that the legalities / culture of practising medicine mean that a doctor will usually order tests and then do things based on those test results. Whether or not the test results are meaningful is irrelevant, since it gives the doctor an easy algorithm to follow, it gives them and the patient confidence that what they are doing is "scientific", and also it gives the doctor legal cover. I..e there are many reasons for doctors following a test-then-treat approach, even if the tests themselves are no good.

 

[snowathlete]

We have to remember that the legalities / culture of practising medicine mean that a doctor will usually order tests and then do things based on those test results. Whether or not the test results are meaningful is irrelevant, since it gives the doctor an easy algorithm to follow, it gives them and the patient confidence that what they are doing is "scientific", and also it gives the doctor legal cover. I..e there are many reasons for doctors following a test-then-treat approach, even if the tests themselves are no good.

I think this is a very good point.
Whether the nagalase test is, or isnt reliable, i dont know but, certainly some people have reported it lowering as their treatment has progressed. What nagalase is also makes sense with that, so i see no reason why the test wouldnt be good. At anyrate, i think either aproach is fine, but im personally going to get the test i think, its not that expensive.

 

[clive powney]

Going back to the original post somewhat. I believe Maryb wanted to share the cost of MAF314 with someone.
Has anyone got an idea of these and the cost of the tests if they wanted them? There would also be some logistics involved in sharing the medication - not sure how it can be transported easily?