Dr. Myhill- outcomes of treatment -good,bad,indifferent (poll)

[ThankfulWanyana]

Have you been treated by Dr Myhill? How did you get on?

Or do you know somebody who has?

Have you/they had any improvement?

Thank you for your contributions.

 

[Min]

I do think it unfair to expect one doctor, who has been battling the GMC for years in order to keep her livelihood, should be expected to have all the answers to a complicated neurological illness for which the research has simply not been done.

 

[Lillybelle]

As I'm not in the uk I'm not being treated by her per se. However am following her and richs methylation protocal. And have read a good deal of her site research papers and views on this disease and others.

Whilst I don't think she has all the answers as a GP she echoes much of the nutritional advice of more non traditional doctors and has educated herself on genetic snp research and the views of other leading docs and researchers in the field.

Her site was one of the few I found on how to interpret your bloods with respect to vitamin mineral deficiencies.

After following the protocal for 2 months my mental functioning and brain fog is significantly improved about 50% to what I was. (Mind you I've added a few other sups as well). But at least I can think read and remember again.

Unfortunately the immune system physical pain and fatigue are still the same. However am only 2 months in. Changed the diet 12 months ago so not expecting any additional improvement there.

I told my own gp that I'm following her protocal. I think she was pleased I was trying something that was by another gp and not a naturopath. Mind you have been to a naturopath and he had no understAnding of methylation for cfs/me. When he started recommending mickel therapy I knew it was time to look o/s.

 

[Hanna]

Dr Myhill's site - like Lilllybelle - has helped me understand basics at first when dealing with the disease. The recommended blood tests (mitochondrial function etc) helped to gain some attention from Hubby who is an MD but thought it was in my head, and that was a huge gain for me. But her treatment plan that I followed nearly to the letter during more than a year and a half did very little for me.

 

[justy]

Dr Myhill's site - like Lilllybelle - was helped me understand basics at first when dealing with the disease. The recommended blood tests (mitochondrial function etc) helped to gain some attention from Hubby who is an MD but thought it was in my head, and that was a huge gain for me. But her treatment plan that I followed nearly to the letter during more than a year and a half did very little for me.

What Hanna said.

 

[SDSue]

Dr Myhill's site - like Lilllybelle - was helped me understand basics at first when dealing with the disease. The recommended blood tests (mitochondrial function etc) helped to gain some attention from Hubby who is an MD but thought it was in my head, and that was a huge gain for me. But her treatment plan that I followed nearly to the letter during more than a year and a half did very little for me.

What Hanna said.

What @justy said.

 

[xchocoholic]

I'm in the US so I haven't seen Dr M but she's mostly in agreement with the integrative / functional doctors here. Her info helped me recognize that I had chronic hypoglycemia which was later dx as hyperinsulinemia. She's the reason I recognized that caffeine can help fight fatigue.( just don't overdo it) And the importance of the paleo diet ( dr cordain's version).

Eliminating my food and chemical intolerances has eliminated a lot of my symptoms. I have leaky gut and react to multiple foods and chemicals. Up until 2005, I was an untreated celiac with the dq2 gene tho so some healing was expected. Complications of untreated celiac disease may or may not resolve.

Some changes after starting the elimination diet can happen right away and some can take years. Obviously you need to ensure that you're getting enough calories and nutrients. Ketosis or ignoring nutrient needs will make you feel worse.

I stopped buzzing in 24 hours, narcolepsy resolved in a week , ataxia resolved after 1 year, sunlight sensitivity after 2-3 years, etc etc.

Now after 8 1/2 years I can finally eat gf foods without getting a reaction. No rash or facial tics. kow. Granted processed foods aren't healthy but they're easier.

Tc ... x

 

[ThankfulWanyana]

Dr Myhill's site - like Lilllybelle - has helped me understand basics at first when dealing with the disease. The recommended blood tests (mitochondrial function etc) helped to gain some attention from Hubby who is an MD but thought it was in my head, and that was a huge gain for me. But her treatment plan that I followed nearly to the letter during more than a year and a half did very little for me.

thanks. For input.

 

[taniaaust1]

Thou Ive never seen her face to face, I did follow some of her online info and throu that found the very first thing which helped me in some way (after years of trying so much which didnt help me, I probably had trialed about 30 different things which did nothing before that). So hence I voted good.

 

[golden]

She is the best of a bad bunch.

Well meaning and caring I am sure.

However she confuses all the labels and uses CFS, ME, CFS/ME, CF, PVF. interchangeably.

Does not use or order all the scientifically tested bio-markers for M.E.

I am not bothered ultimately about labels however in doing this she does not check that you have had all the tests to rule out other conditions (as the NHS is so poor at this) For example: Coeliac Disease

Next would be the tests which have been done, but incorrectly or outdated by the NHS. Not flagged up as problematic eg: b12 levels etc.

Then would be her view that there is no reliable test for Lyme (this maybe a good or bad thing).

She seems good at understanding current reference ranges and noticing thyroid problems but simply prescribes thyroid meds without seeing you in person and without checking for adrenal problems. Or even having a Skpye consult.

I think this is particularly dangerous.

She does not check or test you or ask for info. On your blood pressure /POTS for example or basal temperature.


There is no explanation as to why the supplements are being prescribed , particularly if your test results dont show a deficiency, nor any real understanding of the difficulties of taking such supplements.

Nor any warning of the damage and relapses that can be caused and so no real informed consent.

She doesnt do follow up results which particularly is bothersome to me. In other words, she doesnt ask you how you got on with her protocol unless of course you volunteer to go back to her and pay for a consultation.

There is significant leanings into a psych perspective, enough to make me wonder if she has not deliberately devised a blanket protocol like this for maximum placebo response. (For example, injecting yourself rather than taking a pill has been shown to have a higher placebo result).

Finally, the blanket prescribing of a paleo diet (whilst again having been shown as activating a placebo responce) is unjustified in my view.

The current science is absolubtely clear that meat eating to that degree is a cancer and health risk. The best scientific advice is to include a little or no meat in your diet for optimal health. And whilst it embraces the idea and romanticises the cave men era, I think it causes much harm. In my view she should absolubtely NOT be in effect prescribing meat. Its not the 1950s.

That said, she has some excellent website advice (although a lot has had to be removed due to the GMC) and the general overall advice to the General Public is great, its nice seeing functional ideas..although much too reliant on supplements.

 

[Mij]

You make some good points @golden As far as diet and which one is better, I'm starting to think that it might depend on genetics? I feel better eating meat. I've read that it also depends on how the meat is cooked, slow cooking best. When meats (particularly red meats) are cooked at high temps the fat drippings bring up some bad compounds such as PAH's etc. This is apparantly almost as bad as cigarette smoking.

I've followed some of her recommendations from her website which have been helpful for me.

 

[xchocoholic]

It's been 7 years since I learned about the paleo diet from Dr Cordain, but I understood the idea is to eat whatever foods could be eaten raw and come from the ground. No fire, no refrigerators, and no way of hanging onto food when running for your life.

Depending on what food was available on a given day that would mean cavemen could've just eaten all fruit or meat or veggies or nothing. I'm going to avoid cannibalism. I've enjoyed a few mostly fresh blueberries days myself right after picking them.

I'm assuming Dr Cordain hasn't changed this. I've seen a number of people redefine paleo to include unnatural substances such as dairy, but Dr Cordain's version is the original.

Tc . X

 

[justy]

She is the best of a bad bunch.

Well meaning and caring I am sure.

However she confuses all the labels and uses CFS, ME, CFS/ME, CF, PVF. interchangeably.

Does not use or order all the scientifically tested bio-markers for M.E.

I am not bothered ultimately about labels however in doing this she does not check that you have had all the tests to rule out other conditions (as the NHS is so poor at this) For example: Coeliac Disease

Next would be the tests which have been done, but incorrectly or outdated by the NHS. Not flagged up as problematic eg: b12 levels etc.

Then would be her view that there is no reliable test for Lyme (this maybe a good or bad thing).

She seems good at understanding current reference ranges and noticing thyroid problems but simply prescribes thyroid meds without seeing you in person and without checking for adrenal problems. Or even having a Skpye consult.

I think this is particularly dangerous.

She does not check or test you or ask for info. On your blood pressure /POTS for example or basal temperature.


There is no explanation as to why the supplements are being prescribed , particularly if your test results dont show a deficiency, nor any real understanding of the difficulties of taking such supplements.

Nor any warning of the damage and relapses that can be caused and so no real informed consent.

She doesnt do follow up results which particularly is bothersome to me. In other words, she doesnt ask you how you got on with her protocol unless of course you volunteer to go back to her and pay for a consultation.

There is significant leanings into a psych perspective, enough to make me wonder if she has not deliberately devised a blanket protocol like this for maximum placebo response. (For example, injecting yourself rather than taking a pill has been shown to have a higher placebo result).

Finally, the blanket prescribing of a paleo diet (whilst again having been shown as activating a placebo responce) is unjustified in my view.

The current science is absolubtely clear that meat eating to that degree is a cancer and health risk. The best scientific advice is to include a little or no meat in your diet for optimal health. And whilst it embraces the idea and romanticises the cave men era, I think it causes much harm. In my view she should absolubtely NOT be in effect prescribing meat. Its not the 1950s.

That said, she has some excellent website advice (although a lot has had to be removed due to the GMC) and the general overall advice to the General Public is great, its nice seeing functional ideas..although much too reliant on supplements.

This has been my experience - in general I agree. The paleo diet made me feel very very ill and messed with my stomach terribly as did juicing. Antibitoics were prescribed for SIBO without testing first and with no follow up. You have to do all the follow up yourself and keep an eye on everything and then tell her what you want to talk about etc.

 

[xchocoholic]

I just assumed she used the terms cf, cfs, me, etc in her writings because she doesn't just see pwcs.

The paleo diet negates the immediate need to test for celiac or common food intolerances because it eliminates gluten, etc. Granted these tests can be helpful but maybe she's more into patients seeing results quicker vs waiting for test results. This is the approach my gp took in 2005 when I was down 20 lbs, then 106, due to the trots.

Celiac testing can be inaccurate too and waste the patients time too. We see this a lot in support groups.

I never saw her psychobabble but understand the need to recommend therapy for dealing with this illness. Being couchbound, housebound or bedridden requires us to re-evaluate where we get our self esteem. Injections really do work better for some of us. I'd love access to mb12 injections.

Gotta rest. Tc .. x

 

[golden]

You make some good points @golden As far as diet and which one is better, I'm starting to think that it might depend on genetics? I feel better eating meat. I've read that it also depends on how the meat is cooked, slow cooking best. When meats (particularly red meats) are cooked at high temps the fat drippings bring up some bad compounds such as PAH's etc. This is apparantly almost as bad as cigarette smoking.

I've followed some of her recommendations from her website which have been helpful for me.

For sure, i totally support whatever makes you better.


I think flexibility is a requirement in diet.

I may be mistaken but I think she recommends Fried bacon and eggs for breakfast (i expect with coconoil) and i dont recall any specific way to prepare/cook the meat. I will check.

Her advice also got me re-addicted to caffiene n chocolate again (against my better judgement). Onky the smallest amounts were causing me harm.

I appreciate the slow cooker advice. Usually I feed my dogs raw. But have recently been boiling up meat for them
Will look into this. Thanks

 

[golden]

This has been my experience - in general I agree. The paleo diet made me feel very very ill and messed with my stomach terribly as did juicing. Antibitoics were prescribed for SIBO without testing first and with no follow up. You have to do all the follow up yourself and keep an eye on everything and then tell her what you want to talk about etc.

I too had antibiotics prescribed. I think this is just part of the blanket protocol. However I have had particularly bad reactions and side effects to antibiotics in the past. One landmark of improvement for me was getting off antibiotics and repairing the damage done. And yet even knowing this, antibiotics were still prescribed.

 

[golden]

" *Meat*. The worst nourished patients I see are often vegetarians!

I believe that being a veggie is a major risk factor for CFS.

It is hard work to prepare and eat the right foods for optimum balance of protein, fat, vegetables and essential micronutrients. Proteins are essential in a diet, especially for someone who is ill or stressed.

. The problem with meat appears to be how we cook it (primitive man would have eaten his meat raw!). Burned fats are oxidised fats, which are full of free radicals which are damaging to arteries and possibly carcinogenic. If you do have highly cooked meats (eg roasts and barbeques), make sure you have something with it to "neutralise" the free radicals, for example, lots of vegetables. Meat which is boiled (stews, soups) does not contain oxidised fat"
By Dr. Myhill

 

[Valentijn]

Vegan diets are completely lacking in B12, and vegetarian diets are probably quite low in it. A chronic B12 deficiency might increase susceptibility to ME/CFS, or the infections that trigger it.

 

[golden]

Vegan diets are completely lacking in B12, and vegetarian diets are probably quite low in it. A chronic B12 deficiency might increase susceptibility to ME/CFS, or the infections that trigger it.

Vegan diets are not completely lacking in B12.

Well, Dr. Myhill isnt focusing on possible potential B12 weakness in Vegetarians/Vegans at all. But a widespread condemnation of Vegetarians.

Also her observations clearly must be biased since the majority of people with M.E. (CFS) Are not veggie/vegan.

The meat eating population have at least as high a B12 deficiency as veggies/vegans.

Whilst my NHS B12 test showed good b12 - i have never been offered the functional b12.

I think though that it would make the best sense that Vegan reference ranges should be established from long term healthy vegans, not from a population of meat eaters.

 

[golden]

I just assumed she used the terms cf, cfs, me, etc in her writings because she doesn't just see pwcs.

The paleo diet negates the immediate need to test for celiac or common food intolerances because it eliminates gluten, etc. Granted these tests can be helpful but maybe she's more into patients seeing results quicker vs waiting for test results. This is the approach my gp took in 2005 when I was down 20 lbs, then 106, due to the trots.

Celiac testing can be inaccurate too and waste the patients time too. We see this a lot in support groups.

I never saw her psychobabble but understand the need to recommend therapy for dealing with this illness. Being couchbound, housebound or bedridden requires us to re-evaluate where we get our self esteem. Injections really do work better for some of us. I'd love access to mb12 injections.

Gotta rest. Tc .. x

Yes, a lot of testing is not accurate. I am definately gluten intolerant, have never been given a coeliac disease, but i managed fine to discoover that i was gluten intolerant without resorting to a paleo diet.

I wouldnt go as far to say 'psychobabble'. And I dont know if she recommends therapy???

she has an enlightened attitude to 'depression' too ie. Its a waste basket diagnosis that needs the root cause addressing : detox, allergies, heavy metals etc. Etc.

But the 'psych leanings' have been such things like :

*hyperventillation
*hypervigilance
*personality traits
*sleep hygiene. Etc. Etc. Etc.

As an overall common sense package, finding a good healthy diet for yourself, minimise stress, nourish yourself, de-tox, discover imbalance and correct it - I agree whole heartedly with this.