Distraught after seeing my GP :(

[themjay]

Dr Myhill may seem overly confident, even aggressive in her conviction that she can improve people's illness. I found this is a great help, in that after having countless NHS professionals tell me that there was nothing physically wrong she validated my condition. I remember my first consultation she listened with such compassion that I was nearly in tears. Having said that I have tried everything she has to offer and seen no improvement. I would suggest easing into her protocol especially the injections as you may have some nasty reactions - not to mention the considerable expense if you start all her suggestions. I have a GP now who just lets me get on with what I want to do - I find him very helpful when I make requests that are obviously within his NHS comfort zone - such as physical assistance with a wheelchair, referral to immunologist etc but I see his eyes glaze over and toe the party line if I mention anything "controversial." My advice is to lean on people online like this forum who will not judge and can share common experiences and report results of treatment. Never give up hope and never stop believing you are physically ill and deserve respect from all medical professionals.

 

[Mark]

Heapsreal's suggestion looks about right to me, I was going to say something similar. I wouldn't worry too much about your GP's opinion differing from Dr Myhill's, that's only to be expected, and since I suspect you might struggle to find a GP who backs up Dr Myhill I think you might do well to stay with that GP if you have found them to be sensitive, open-minded and sympathetic. The way I look at medical practitioners is that where their advice differs it has to be down to me to make my own choices and to observe and see what works and what doesn't. It's quite possible to try different approaches, either at the same time or one after the other. Of course it's always best to be open with your practitioners about what other treatments you're trying so that they are aware of any possible interactions and risks and can assess what might be having an effect.

Note that you don't need a prescription for Co-Q10, sublingual B12, or most/all of the other supplements suggested, and you can get general advice directly from Dr Myhill's website, so it's always possible to try something like heapsreal's suggestion without needing a prescription and without prohibitive cost. Personally, I benefited enormously from a year of following Dr Myhill's recommendations, with tailored advice based on my test results from Biolabs. In particular the tests that identified my specific environmental sensitivities were a revelation, and the truth of those sensitivities to things like washing up liquid was quite stark and simply undeniable in my case - those particular tests too are unrecognised and my GP was sceptical also (well heck, so was I!), but the truth of those findings was just impossible for me to ignore. I know several people who have been significantly helped by Dr Myhill, and I've heard from others who haven't been helped too. But I haven't heard many accounts...no, strike that, I can't recall ever hearing any accounts of anybody being significantly helped by the advice in the NICE guidelines - the advice about sleep etc is all sound and I'm not suggesting you ignore that, but it's not a great deal of help if you simply can't get into deep sleep no matter what you do.

So I would personally suggest that you don't need to be put off by your GPs reaction, which is to be expected, and whether you want to go ahead with Dr Myhill's recommendations is up to you. The only real difficulty, I suspect, would be the administering of B12 injections. If your GP won't do that, maybe you can find a way round that problem; in my case I'm confident that sublingual B12 was (and still is) effective so I don't think injections are always essential, though I suspect they are preferable - ironically, precisely because of the potential stomach/absorption issues that your GP highlighted in relation to Co-Q10 (and that's a new one to me as far as Co-Q10 goes).

In the end, we all have to make our own choices in situations like this, and find our own path; I would just suggest that experimentation, open-mindedness, careful self-observation and persistence are all important in finding the best prospects for improvement and symptom management. And I wish you the best of luck, Lae - welcome to the forums!

 

[taniaaust1]

I don't understand much about ME, and I don't know if Myhill is a quack or a saviour of the sick. I suspect she has some success cases, some real critics and many people somewhere inbetween.

In ME circles I dont think she has got all that many critics but she does have a large number of ME/CFS supporters (Ive only ever heard of one getting worst with her treatments and she treats a large number of ME/CFS people).

It was Dr Sarah Myhill who gave me my first ME treatment breakthrou which I got from her online advice (she's like got a whole book on ME online which you can read). Finding something which helped me by her advice, after 8 or more years of NOTHING at all helping my ME improve (I had tried so many vitamins, herbs and other things before that with no success at all) .. it gave me hope for the first time that there may be other things out there which also could help. On my own, I took Dr Myhills online advice about B12 injections (and taught myself how to do them and started doing those twice per week) against my own doctors advice. It took me from a non functioning brain to functional again some.

If you truely want to get better, one often needs to just forge ahead with things and start trialing things which you suspect may help whatever subgroup of ME/CFS you have. If you are expecting ordinary GPs to treat your ME/CFS you probably wont progress very good at all. Being in the age of internet.. we all are fortunate to have info easily available to us.

I saw like a brainy "wonder doctor" today.. one who takes patients who other doctors havent been able to help and from my old test results he found NINE different health issues which doctors havent realised from my test results or treated me properly for yet (and I got this illness 15 years ago...so much being missed). Dont give up.. keep trying to get help and seek other doctors out if you hear of one who is helping other patients.

 

[taniaaust1]

PS UKxmrv, she did mention the GMC hearings actually which suprised me that she had looked into it so much. She seemed concerned by this - although I did of course say that it had all been overturned.

Dr Sarah myhill has been throu so many hearings.. thing is they are always thrown out as she's not doing anything wrong but the thing is most doctors wouldnt be able to cope with what Dr Myhill has had too... so will strictly follow the CFS medical guidelines (which are useless).

 

[anniekim]

I understand you were upset by your GP's dismissal of Dr M's tests. I do know that her mitochrondria tests are not recognised by the NHS and so your GP's response is not unsurprising. If your GP is open and sympathetic then I would keep her as your GP for the few things she can help with. As for treatments basically, apart from sleep and pain meds, there are none available on the NHS at this time.

If it helps, I have yet over the years read of anyone who was significantly helped by the treatment program Dr M prescribes for mito problems. I know of people who have seen Dr M who have tried many of her standard approaches, mito supps, B12 and mag injections, diet with no signficant improvements. I do know of one person where Dr M suspected and tested for a high mercury load and treating that has helped this person enormously. Others have shown no high mercury. So I am not saying Dr M hasn't helped people, she has but equally from my observations over the years many have had no improvement or only small improvements with her suggested treatments.

I've consulted with Dr m over the years, for some things she has been useful but she has also twice given me I believe very bad advice triggering bad relapses.

I personally find her very strident with her views. To me she seems to talk as if she has all the answers and if you just follow her advice you will recover. Whilst I suspect she can definitely help some people with M.E improve functioning but not cure. From answers on here some like her confidence and strident views which I respect. We are all different. There are few doctors in the UK that take M.E seriously so to have a doctor such as Dr M recognise we are very ill goes very much in her favour.

As Heapsreal says getting tested for viral load might be idea and you could do this through Dr M. Also perhaps you could consider a trial of LDN which you can buy cheaply over the internet with few side effects. It doesn't help everybody but it can help some.

I view it after 14 years of this illness that there is no cure for this illness but there may be some treatments that can help a person improve. The problem is you have to spend a lot of money testing and trying different things that may not work or even make you worse. It is very hard. Above all the one thing every can do is try and pace as best as circumstances allow and avoid stress, as regularly pushing it and sustained stress can cause the M.E to progress to a more severe form, although for some the M.E gets worse for no obvious reason. I say this but I didn't follow this advice and have now been severe for the last 8 years.

Wishing you all the best

 

[PhoenixDown]

Just posting to say I've had her tests done, it showed mitochondrial dysfunction and few other things I'd not heard of up until now, however my NHS GP is refusing the B12 & Magnesium injections so I can't really try her protocol.

There's obviously a lot of negativity towards her, one of my previous doctors called her a "quack", my current GP was far more political in how he worded it. As for myself I'll judge things on the science not her reputation, sadly it seems this B12 experiment will never get done so I can't vouch either way.

I do however think that it's kind of sad that the NHS will let you pop anti-depressant pills like candy, relatively speaking, but not let you try B12.

It's worth mentioning that on the vitamin B tests the NHS give you, nothing showed up anything with me (and won't for CFS/ME, if it did you probably have an additional/different illness), but the point is that Sarah Myhill is contesting the accuracy and relevance of the that test. She goes into detail in her booklet.

 

[jimells]

Lae - your GP seems to be misinformed about the CoQ10. Even the U.S. National Institutes for Health recognizes that CoQ10 can prevent/reduce migraines, and it's hardly a radical organization! I have also seen research someplace that shows sublingual B12 is usually as effective as B12 injections, according to the standard blood tests (which says little about whether we are actually properly using the B12, but that's another extemely complicated topic altogether).

I still don't understand how western medicine has come to discount any treatment that doesn't involve potentially toxic pharmaceuticals. Most doctors seem to be just plain uneducated about supplements in general. For example, after many years and doctors, I finally have a caring GP who believes ME/CFS is a real illness and that I have it. When I told her about having IBS-like symptoms that I mostly tamed with grapefruit seed extract, she confessed that she would never have suggested it, simply because she knew nothing about it. The sad truth is that we have to be our own doctors, a totally unfair position for sick people to find themselves in.

 

[taniaaust1]

Just posting to say I've had her tests done, it showed mitochondrial dysfunction and few other things I'd not heard of up until now, however my NHS GP is refusing the B12 & Magnesium injections so I can't really try her protocol.

There's obviously a lot of negativity towards her, one of my previous doctors called her a "quack", my current GP was far more political in how he worded it. As for myself I'll judge things on the science not her reputation, sadly it seems this B12 experiment will never get done so I can't vouch either way.

I do however think that it's kind of sad that the NHS will let you pop anti-depressant pills like candy, relatively speaking, but not let you try B12.

It's worth mentioning that on the vitamin B tests the NHS give you, nothing showed up anything with me (and won't for CFS/ME, if it did you probably have an additional/different illness), but the point is that Sarah Myhill is contesting the accuracy and relevance of the that test. She goes into detail in her booklet.

As another here said subliminal B12 (active forms) are supposed to be just as good as B12 injections (I dont think subliminals like that were around originally when the B12 injections become a common ME/CFS treatment thing and some just seem to have stuck to the injections from there). Other forms of B12 can help some of us even without magnesium.. I suggest you get yourself some subliminal B12 to trial.

 

[themjay]

I was very apprehensive about self injecting but with practice found that B12 is completely painless and very easy - i inject in my bottom. Magnesium however can be painful - like a prolonged wasp sting which is why Dr Myhill suggests you add a little local anaesthetic to the syringe first. It can also leave very painful bruising and you can accumulate hard tissue which makes injecting more difficult. She also supplies transdermal magnesium spray which I have found very effective - and I have found additional benefit from the Epsom Salt baths she recommends.

 

[Leopardtail]

After joining this forum and reading more about ME I went ahead and got a mitochondria function profile done with Dr Myhill. I'd been to see my new GP before ordering the test to see if she would support me in it - she (refreshingly!! ) said that she was open minded about ME and would be happy to receive the letter of results and take any action that was medically appropriate. I was overwhelmed and felt SO optimistic!

The results came back last week which were interesting and gave me hope to have some sort of potential treatment plan for the first time. So I organised an appointment with my GP to see what she thought and whether she was happy to support me in treatment such as B12 injections, certain further tests.

I was surprised to walk in and find my GP sitting with a copy of the letter with annotations on it, having obviously been through it thoroughly.

She was kind about it (which in itself is a first for me with GPs in the UK in recent years), but used words such as "baloney" "no medical or scientific grounding" "hot air" to essentially say that most of what Myhill said was a load of rubbish! She said that some of it made sense and was important such as pacing, a healthy diet (but not stoneage, too extreme for someone underweight), sleep, certain supplements but she said that some of the tests were nonsensical. She said the advice given was potentially damaging. She also said that CoQ10 shouldn't be taken orally anyway as it just gets digested into the stomach! Basically she won't be supporting me with Dr Myhill.

There was also a recently qualified Cambridge doctor observing who was also very kind but she agreed that it made very little medical sense beyond the basics.

Now I don't know what to think. I feel so distraught and like all my hopes have come tumbling down around me. I just want to get better I hate this illness, I see or hear of old friends building lives around careers, buying houses with their partners as they have two incomes, starting families that they are able to care for. I want that too.

Sorry. Had to share.

Your doctor was only half right about the CQ10, it should be taken in gel capsules to get it thought the stomach. There is quite a lot on MyHill's website and in Titelbaum's book that you can do for yourself. I would strongly suggest that you start there.

I share your frustration, I have a potentially deadly interaction of ME and type I diabetes and the level of care I am getting is negligent, but unlikely to change.

 

[Leopardtail]

lae - my experience was totally the same, hearing them speak about dr my-hill like that made my blood boil, I saw a copy of some correspondence between my GP and a GI consultant who was a friend of hers, basically mocking Dr M's letter, they are pitiful in their ignorance- overpaid idiots.
heaps has given you the best advice, change your doctor and don't mention me/cfs, you're more likely to get more treatment or support. As he says just deal with each symptom on an individual basis, I just go in every couple of years and say I'm feeling tired, not able to do anything, they run a few blood tests which save me money, apart from that they will not help. Don;t think because its on your record they'll notice, they don't bother reading beyond the last visit normally, lazy to boot.
It is upsetting and comes as a shock but the bottom line is we're on our own.

I have to agree Mary. All we have is each other. It's high time WE started doing the research and taking ownership of OUR disease. The long and short of it is energy generation goes on in cells and doctors know disgracefully little about cells and biochemistry. The vast majority of doctors refer to it as 'that Krebs cycle stuff we had to learn'.