Dr. success using higher doses of GCMAF

hixxy

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I wonder the same thing, heaps. My daughter and I make for an interesting case study. We came down with the same very sudden onset flu-like illness within a week of each other. While I "recovered", I had frequent bouts of what I would now call PENE. Daughter, on the other hand, appeared normal except for big crashes a couple times a year probably associated with viral infections. We would not have recognized them as part of ME/CFS if we weren't knowledgeable from my experience. Dr Lapp saw her while she was in a remission period and agreed that she has ME/CFS.

I was probably continuously sick from shortly after the initial infection, although I kept operating (or trying to) normally for a couple of years, so I've been continuously sick for about 8 years -- 6 years prior to Valcyte.

Daughter was largely in remission for about 5 years until pre-college vaccinations. We're guessing the live virus chicken pox (HHV-3) reactivated HHV-6 and Epstein-Barr (HHV-4). After that she was continuously ill for 1 year before Valcyte. Dr L seems to count from how long a patient is continuously ill, not from first time one was ill when considering recovery possibility.

Daughter has now been in full remission (and off Valcyte) for 9 months. She still takes Valtrex which may be preventing the once or twice a year crashes (reactivations?) she used to have.

Why did 18 months of Valcyte put her in full remission while I'm still largely housebound after more than 2 years of Valcyte? Length of continuous illness is one possibility. Age of patient (therefore weaker immune system) could be another. Degree of illness? I was sicker than she was when we started Valcyte, so that could also be a factor.

Based on our experience alone, I would guess that longer illness means more and longer opportunistic infections which do a lot of damage and may prevent full recovery. As a result, I'm a proponent of aggressive AV treatment as soon as possible.

Yes, she'll be getting an NK function tests along with the others. We'll have the same tests, so it will be interesting to compare results.
It's a shame if early aggressive AV therapy is so important. It's hard enough to get a diagnosis for this disease, let alone get AVs out of doctors in Australia.

Once again medical ignorance is destroying lives.
 

heapsreal

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It's a shame if early aggressive AV therapy is so important. It's hard enough to get a diagnosis for this disease, let alone get AVs out of doctors in Australia.

Once again medical ignorance is destroying lives.
Even if someone came down with mono from ebv or cmv with positive igm titres and docs prescribed antivirals for even 2 weeks at the onset of the illness or maybe longer for those slowly recovering, at a guess i would think this may reduce the numbers of cfs/me patients.

SOC my cfs started 10 yrs ago with a triple treat of ebv, cmv, chicken pox within 6 month period. After the first 6 -12 months of constant fatigue, i had about 5 years of recovery crash, not push and crash, which i think was these viruses reactivating at regular interval and some of my earlier lymph sub set tests in 2007 before i was constantly buggered indicated this. Then when the constant cfs was there then the constant elevated lymph sub sets occurred. Av's have definately helped and have brought my lymphocytes down to almost normal but i cant help but think if i had avs alot earlier i would have been alot better off. Even though lymphs are almost normal i think maybe these viruses are now deeper and possibly not showing up as easy as they once did. During those first few years i couldnt get a doc to prescribe me av's even though i tried and i almost was going to just buy the dam things of the net but was worried about doing so without a docs go ahead. Dam it, i should have done it 8 yrs ago. They should prscribe av's like they do for shingles, to prevent future complications.

Sorry for whinning, little sleep and im cranky.

cheers!!!
 

SOC

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It's a shame if early aggressive AV therapy is so important. It's hard enough to get a diagnosis for this disease, let alone get AVs out of doctors in Australia.

Once again medical ignorance is destroying lives.
Agreed. My daughter was lucky in that we already knew a lot about ME/CFS when she became really sick and got her relatively quick AV treatment. I have no doubt she would be much sicker now, dropped out of college, and her future irreparably harmed.
 

Googsta

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Hixxy, I got a messgae concerning Dr Lewis, Nagalase test, MAF 314...

Dr Lewis does send Nagalase test to Redlab in Belgium. I think Sushi provided the details earlier. My friend also provided this link -

St Benedicts Healthcare in New Zealand does this test for NZ$350. The next batch closes on 1 June. See www.stbenedictshealthcare.com/nagalase.html for more infomation.

The patient is 21, has been sick for a little over 2 years. They have been doing the MAF 314 for 8 weeks.
Currently experiencing digestive upsets, digestion is quite sluggish. They feel 'full' yet hungry most of the time & has a constant craving for salty food.

They do report improved sleep, which had been quite an issue for them.

I hope this helps someone, I'll try to give an update later down the track.
 

hixxy

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Hixxy, I got a messgae concerning Dr Lewis, Nagalase test, MAF 314...

Dr Lewis does send Nagalase test to Redlab in Belgium. I think Sushi provided the details earlier. My friend also provided this link -

St Benedicts Healthcare in New Zealand does this test for NZ$350. The next batch closes on 1 June. See www.stbenedictshealthcare.com/nagalase.html for more infomation.

The patient is 21, has been sick for a little over 2 years. They have been doing the MAF 314 for 8 weeks.
Currently experiencing digestive upsets, digestion is quite sluggish. They feel 'full' yet hungry most of the time & has a constant craving for salty food.

They do report improved sleep, which had been quite an issue for them.

I hope this helps someone, I'll try to give an update later down the track.
I need to put some lotto on so I can get yet more testing done ! Yay.
 

ukxmrv

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Does anyone know about the yoghurt MAF used by Dr Enlander (the MAF 878)?

i.e. is it that same as the MAF 314 and are Dr Enlander's patients culturing it in the same way as the MAF314

p.s. the MAF 878 is mentioned in talks he has given recently
 

taniaaust1

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I wonder the same thing, heaps. My daughter and I make for an interesting case study. We came down with the same very sudden onset flu-like illness within a week of each other. While I "recovered", I had frequent bouts of what I would now call PENE. Daughter, on the other hand, appeared normal except for big crashes a couple times a year probably associated with viral infections. We would not have recognized them as part of ME/CFS if we weren't knowledgeable from my experience. Dr Lapp saw her while she was in a remission period and agreed that she has ME/CFS.

I was probably continuously sick from shortly after the initial infection, although I kept operating (or trying to) normally for a couple of years, so I've been continuously sick for about 8 years -- 6 years prior to Valcyte.

Daughter was largely in remission for about 5 years until pre-college vaccinations. We're guessing the live virus chicken pox (HHV-3) reactivated HHV-6 and Epstein-Barr (HHV-4). After that she was continuously ill for 1 year before Valcyte. Dr L seems to count from how long a patient is continuously ill, not from first time one was ill when considering recovery possibility.

Daughter has now been in full remission (and off Valcyte) for 9 months. She still takes Valtrex which may be preventing the once or twice a year crashes (reactivations?) she used to have.

Why did 18 months of Valcyte put her in full remission while I'm still largely housebound after more than 2 years of Valcyte? Length of continuous illness is one possibility. Age of patient (therefore weaker immune system) could be another. Degree of illness? I was sicker than she was when we started Valcyte, so that could also be a factor.
Your daughter sounds very much like how my illness was.. big viral crashes but well in between them (I was like that for the first year)... then I got bedbound thou for quite a long time but after a few years recovered and had a full remission for a few years (without any treatments done).

I personally believe that some of us have bodies with are capable of fighting the ME better for some reason? (I'd really like to know that reason, it may provide the big answers to this whole illness). so maybe just Valcyte was able to give her that edge over the illness she needed to improve again.

Thanks for sharing your daughters story.
 

CindyWillis

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My husband and I are currently taking it in addition to the GCMAF shots. It is pretty cheap at I believe $125 a month and works well. My husband takes it regularly but I am taking it 4 times a week. I take it at 4pm and feel great for 4-5 hours and then while i sleep the effects happen and am okay the next morning to go to work. It's effects are over in 15 hours for me so that takes care of them. My husband (and I understand other patients) have no side effects on it so can take it in the morning or night.


Does anyone know about the yoghurt MAF used by Dr Enlander (the MAF 878)?

i.e. is it that same as the MAF 314 and are Dr Enlander's patients culturing it in the same way as the MAF314

p.s. the MAF 878 is mentioned in talks he has given recently
 

Daffodil

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since i started gcmaf, i havent bled during bowel movements. before, i bled during almost all bowel movements, for several years. once, colonoscopy showed "inflammed anal canal".

i have taken 10 injections so far. only minimal improvements to report...fog still bad, a little more energy :-/

xoxo
 

ukxmrv

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Thanks CindyWilis for the reply on MAF878. Good to hear of your experience.

Does Dr Enlander send the MAF878 to you already cultured and ready to drink?
 

hixxy

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since i started gcmaf, i havent bled during bowel movements. before, i bled during almost all bowel movements, for several years. once, colonoscopy showed "inflammed anal canal".

i have taken 10 injections so far. only minimal improvements to report...fog still bad, a little more energy :-/

xoxo
I hope the injections you have left are the ones that give you the most improvement Daffodil!! :hug:
 

Daffodil

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thanks hixxy! it really varies from day to day..some days are awful, then on others i am sure its working...

xoxoxo
 

CindyWillis

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Thanks CindyWilis for the reply on MAF878. Good to hear of your experience.

Does Dr Enlander send the MAF878 to you already cultured and ready to drink?
Yes. It is all ready to go. You let it sit out for 5 days and then put it in the fridge and then drink it everyday.
 

CindyWillis

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Cindy,

That's quite an impressive improvement and in such a short time!

Help me understand.
So far my impression was that higher doses were counter-productive because of the excess inflammation they tend to produce.
My experience with Maf314 is similar. After almost four months on Maf314, I have become used to the standard one-a-day but if I take two a day I feel more tired, bearable though.
I have tried to increase dosage to accelerate my recovery but two a day is what seems tolerable so far.

Additionally, I tried K-Maf, the homeo version, in conjunction with Maf314 and after a few days I started having night sweats and got so fatigued I struggled to maintain my activities level. I tried a couple of times but I just could not handle it.
But if I take a break from any Maf, which I have, my energy levels go up a lot just after a couple of days off it. (based on your post may be I'll try starting from a low dose and going up slowly and see if that works more effectively).

So I'm quite perplexed, because I know I have made substantial improvements on it but my experience is that it works on me by making me worse not better while I take it.

Haven't other doctors already tried to titrate up dosage with their patients? Is Dr Enlander using a different type of GcMAF than other doctors?
Do you know how long it takes on average for a patient to get to that 100% recovery rate?
Dr. Enlander is using the GCMAF from Dr. DeMelier. He also uses Heppapressin shots and other stuff as well. My experience is that GCMAF makes you feel worse 18-24 hours after taking it but then feel better 24 hours later. I am now at a point that it doesn't make me feel bad to take it and now I get a lot of energy when I take it. The much higher doses caused this. The first weekend I couldn't lift my head off the pillow but after that I actually get a lot of energy from it. I am only slightly tired 18-24 hours later and then fine 24 hours later. I had heard that once you started to get better that it didn't make you feel bad after taking it and that is true. This is the first week that I have felt almost 100% well. I worked extremely hard from 7:30am until 11:30 pm every day and only slept 6-7 hours a night and was not tired this week and felt physically and mentally strong. I tried taking a very small amount of Heppapressin each day (.10) and had incredible results this week with it. It made any remaining weakness go away and I noticed that my moons on my finger nails got bigger in the past two weeks. I will continue to take the small amounts of Heppapressin each day in addition to the 1 ML shot I take with my GCMAF shot. It really helped. I hope this is helpful.
 
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I have the exact same experience with KMAF although I still have a hard time "believing" in the homeopathic version. It makes me feel worse for up to a full day and then I have a really awesome next day. I don't have hepapressin available though but I am just finishing 2LEBV and started the rest of the equillibrant again.
 
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I tried taking a very small amount of Heppapressin each day (.10) and had incredible results this week with it. It made any remaining weakness go away and I noticed that my moons on my finger nails got bigger in the past two weeks.
I thought those fingernail moons were only bad signs of deficiencies?

They can change that quickly?
 

hixxy

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Is it a good or a bad thing to have these moons? I've just noticed I don't have them, but I've noticed them in the past. I have them on my large toe nails tho.
 

hixxy

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I have fingerprints. I often get weird shriveled fingertips tho. What specifically does no moons indicate though?