myhill protocol - experiences?

[dannybex]

Diet...

Hi Wallace, i am following her supplement protocol and parts of the diet, but as i have been a vegetarian for a VERY long time, i am not about to go the whole hog with the meat eating part. She does seem to be particularly hung up on this. I have been having good results with the suplements and diet that i am doing so far - although gradually introducing the supplements is a real pain and is taking me ages.

I think Myhill is great, and kind of understand her reasoning for prescribing the 'Stone-Age' diet, but a one-size-fits-all diet is unlikely to work for all patients, because we all have different body types -- some of us are heavier, some are waaaay too thin.

I'm in the latter category, and every time I've tried a stone-age or 'zone'-type diet, I become a lot more tense, and lose weight within days that I can't afford to lose. Some of us need more carbs, some need less.

Another example is the "fasting" thread. For some, fasting is very risky, especially again if one is too thin, but it might be very helpful if one is heavier, or even of a normal weight.

But overall, I think her advice and the protocols she offers are excellent.

just my two cents!

d.

p.s. It's very encouraging to hear the stories of improvement. I just started Rich Vank's methylation protocol about 2 weeks ago after testing positive for a partial methylation cycle block...

 

[wallace]

What is the most niacin people have been on here? I took a single dose of 2000mg this morning and its certainly powerful!

I read the china study by T colin campbell a year ago and since then have been low fat vegan. Meat and dairy are bad for you and its been prooved! Also of course there is the small matter of the fate of our planet..;;;;;producing this toxic food.

We have a genetic problem so what we eat cant change that. we just need vitamins in particular the B, and lots of B3


I saw at a talk she gave and she seemed very much into selling her approach which struck me a rather rigid stance to take. Telling patients to move countries etc proves that she is no shrinking violet.

I believe in the orthomolecular approach so what may be sufficent vitamins for one person wont work for others. I am not convinced that her test for niacin status is so robust as to dictate how much niacin you need.

So I dont agree with everything she says but she has enough problems at the moment!

Cheers.

Hi Wallace, i am following her supplement protocol and parts of the diet, but as i have been a vegetarian for a VERY long time, i am not about to go the whole hog with the meat eating part. She does seem to be particularly hung up on this. I have been having good results with the suplements and diet that i am doing so far - although gradually introducing the supplements is a real pain and is taking me ages.

 

[Rita]

Dr Sara Myhill, now like private nutricionist

from the page fo Sara Myhill

29th October 2010

I am happy to offer consultations to new patients in my role as a private nutritionist. If you are interested, please contact the office by email or by telephone to discuss convenient arrangements. Contact details can be found here
27th October 2010

Following the IOP decision on 14th October 2010 suspending my licence to practise medicine, I now give nutritional advice. As a result of this change to my status, my services are currently not exempt from VAT. This means that I have to charge VAT for consultations, either in person or by telephone or by letter. This includes interpretation of test results. To lessen the financial burden on my patients I am lowering prices for these services by 10% before adding VAT to them.

 

[jen jen]

Hi,

I'm on dr Myhill's protocol following my mitochondrial function test, which was bad only scored 20% with a 38% translocator blockage.
I've been taking the supplements for 4 months and also started doing FIR saunas about 3 months ago. At the moment I would say that i'm worse but Dr Myhill said it's normal to go worse initially. I am sticking to it as I totally believe in Doctor Myhill. I do find the diet hard but there is a good recipe for a smoothie that helps with stabilising blood sugar levels.

 

[slayadragon]

In the end I think she was rather irritated by my failure to get better. She puts this down to mould allergy, despite my house being apparently mould-free. This may or may not be the reason for my non-recovery but she became impatient when I could not implement her solution of moving to Spain or right on the UK coast. This would have meant leaving my partner, in the case of Spain I don't speak the language, in the case of the UK coastal property is highly expensive, difficulties of long-distance move away from support network etc etc. I don't think mould allergy explains my strong seasonal pattern of being much improved in spring and then housebound all summer every year.

Really, she was that emphatic that you should move?

How did she determine that your problems were due to a mould allergy?

Do you live in New Zealand now? Did you travel to the UK to see Dr. Myhill then?

Did she give you an explanation for why Spain or the coast might be good for you?

Thanks very much for any info you're willing to provide.

Best, Lisa

 

[curry]

Hi,

I'm on dr Myhill's protocol following my mitochondrial function test, which was bad only scored 20% with a 38% translocator blockage.
I've been taking the supplements for 4 months and also started doing FIR saunas about 3 months ago. At the moment I would say that i'm worse but Dr Myhill said it's normal to go worse initially. I am sticking to it as I totally believe in Doctor Myhill. I do find the diet hard but there is a good recipe for a smoothie that helps with stabilising blood sugar levels.

In my case, the mitochondrial supplement package and diet, as suggested by Myhill, work fine, though I had to take out the recommended D-Ribose as my gut is susceptible to candida.
I also don't take the minerals as they also contribute to gut fermentation.

If you feel worse after 4 months (that's quite a long time for some die-off/herxheimer reaction), I would go over your therapy plan, and try to find out what makes you worse.

In my opinion, there is no one size fits all treatment...

Hope you feel better soon.

 

[OverTheHills]

Really, she was that emphatic that you should move?

How did she determine that your problems were due to a mould allergy?

Do you live in New Zealand now? Did you travel to the UK to see Dr. Myhill then?

Did she give you an explanation for why Spain or the coast might be good for you?

Thanks very much for any info you're willing to provide.

Best, Lisa

Hello Lisa

Yes she was indeed emphatic that I should move - on the grounds that in the UK only places right on the shore with onshore breezes will be free of airborne mould spores, or the spanish desert would be dry enough to not have any airborne mould. Totally impossible for me.

Diagnosis: I did react positively to some allergy tests for mould, but I am not convinced how reliable these were. Certainly a couple of months and some tweaking of the associated neutralisation therapy (self-injections of a lower dose of allergen to de-sensitise) produced no effect except lowering my bank balance.

She has stated on her website that patients who do not respond to her protocol (diet, supplements, avoidance of allergens and chemicals) are probably mould-sensitive. I am sorry to say I think this is just another version of the "too hard basket", I felt that she had exhausted all her usual approaches and I was inconveniently not getting better.

I do not believe mould is my problem - my symptoms do not worsen when I go into a mouldy environment, do not vary when I move house, I do not have the severe MCS type problems like Mark does for example (I just need to use unperfumed/sensitive skin versions of everything but that predates ME by decades), my symptoms seem to have the wrong seasonal pattern, eating mushrooms doesn't bother me etc.

For background I typically vary between a mild (able to leave the house with good pacing, but not exercise) and a moderate (housebound and sometimes bedbound) during summer. I have little pain except when PEM'ing and no POTS (although I'm thinking maybe I should ask for testing in summer when I can't stand for any length of time).

I am not saying that no-one has mould issues, and I know you're a believer Lisa, just that I don't believe its a significant factor with me. I do live in NZ now, but I lived in the UK when I saw Dr Myhill.

Hope this helps

OTH

 

[slayadragon]

Hello Lisa

Yes she was indeed emphatic that I should move - on the grounds that in the UK only places right on the shore with onshore breezes will be free of airborne mould spores, or the spanish desert would be dry enough to not have any airborne mould. Totally impossible for me.

Diagnosis: I did react positively to some allergy tests for mould, but I am not convinced how reliable these were. Certainly a couple of months and some tweaking of the associated neutralisation therapy (self-injections of a lower dose of allergen to de-sensitise) produced no effect except lowering my bank balance.

She has stated on her website that patients who do not respond to her protocol (diet, supplements, avoidance of allergens and chemicals) are probably mould-sensitive. I am sorry to say I think this is just another version of the "too hard basket", I felt that she had exhausted all her usual approaches and I was inconveniently not getting better.

I do not believe mould is my problem - my symptoms do not worsen when I go into a mouldy environment, do not vary when I move house, I do not have the severe MCS type problems like Mark does for example (I just need to use unperfumed/sensitive skin versions of everything but that predates ME by decades), my symptoms seem to have the wrong seasonal pattern, eating mushrooms doesn't bother me etc.

For background I typically vary between a mild (able to leave the house with good pacing, but not exercise) and a moderate (housebound and sometimes bedbound) during summer. I have little pain except when PEM'ing and no POTS (although I'm thinking maybe I should ask for testing in summer when I can't stand for any length of time).

I am not saying that no-one has mould issues, and I know you're a believer Lisa, just that I don't believe its a significant factor with me. I do live in NZ now, but I lived in the UK when I saw Dr Myhill.

Hope this helps

OTH

It's interesting to hear more about what Dr. Myhill is saying about this topic. Biotoxins are clearly really important in the UK, but I'm not sure exactly what the patterns are compared to the ones in the US. I don't think she's approaching this "mould allergy" concept in a really effective way, but she seems she's on the right track for a lot of people. Her observations would be useful for me in understanding what's going on there.

With regard to your case:

So you got worse in the summers (e.g. June, July, August) when you were in the UK? And now you get worse when the weather is warm (December, January, February) since you're in NZ?

That does seem to point to something in the environment. I wonder if Mark has found a seasonal pattern to his own symptoms.

Cyanobacteria (which grows outside) is more prevalent in the warm months in many places. This may be more your problem than mould, per se.

I wonder if Dr. Myhill gets any improvements from the neutralisation therapies, with regard to people's ME symptoms.

Mark says he feels better if he stays inside his clean apartment with air filters running. Clearly he's affected by something in the outside air too.

Do air filters help you?

I know one person from Australia who has managed to control his illness just by control of indoor environments (including possessions). He clearly finds places to go that have good outside air.

Everything I know of England suggests that there is no such thing as good outside air there. Maybe the same thing is true in New Zealand. That country does seem to have had more than its fair share of ME/CFS epidemics, which (I believe) are associated with outdoor biotoxins.

Have you ever felt better on a trip to another country? How about Australia (especially outside the cities)?

Thanks for the info. I'm not so much looking to set you on a course toward mould avoidance as just to figure out what's going on there.

Best, Lisa

 

[jen jen]

Hi,
Dr Myhill thinks I have a fermenting gut so i rub the mineral drops onto my skin. But I do take the other supplements orally. I have cut down on the D-ribose as i wonder if it makes the candida worse. I did take a treatment of lufenuron for the candida and im gonna try some neem which is supposed to help with candida and infections.

I think i'm feeling worse as part of the detox from the FIR sauna treatments. Did you try these ?

regards

 

[slayadragon]

BTW, has Dr. Myhill talked about mould with any of the other patients reading this thread? Or have you heard any more about her comments on it?

Thanks, Lisa

 

[wallace]

Cost of her protocol

including everything for the first 6 months could anyone here give me a very rough figure???

thanks
Wallace

 

[wallace]

A friendly support form on Dr M
http://uk.groups.yahoo.com/group/drmyhillcare/?yguid=86973024

 

[jen jen]

depending on what Dr Myhill finds. I'm spending about 100 a month on supplements

regards