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Dr in UK?

Discussion in 'ME/CFS Doctors' started by MaryH, Jul 20, 2013.

  1. MaryH

    MaryH

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    New to this site! Does anyone know of a knowledgeable and sympathetic doctor in the UK to phone or go to for advice? My 36 year old daughter is SO ill at the moment and is convinced her detox pathways are blocked. We need help quickly.Going down the Myhill route but no idea how long it will take as she's so busy. Really can't bear the thought of getting the GP as she'll only end up in hospital which will make her ten times worse. Would be very grateful for any help.
     
  2. wdb

    wdb Admin

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    If it is ME/CFS then I agree a GP would be unlikely to offer much to help but unless you have already you could at least get as many as possible alternative and potentially treatable illnesses ruled out, e.g.

    Exclusionary illnesses:
    Many other illnesses have symptoms that mimic ME/CFS symptoms. Active disease processes that could explain the major symptoms of fatigue, sleep disturbance, pain, and neurocognitive dysfunction must be ruled
    out by history, physical examination and medical testing. The following lists some more common, exclusionary
    conditions:
     Anemias
     Autoimmune diseases such as Rheumatoid Arthritis, Lupus
     Cardiac disease
     Endocrine disorders such as diabetes, Addison’s disease, thyroid disease, menopause
     Infectious diseases such as Tuberculosis, HIV/AIDS, chronic hepatitis, Lyme disease
     Intestinal diseases such as celiac or Crohn’s disease
     Malignancies
     Neurological disorders such as multiple sclerosis, Parkinson's disease, myasthenia gravis
     Primary psychiatric disorders and substance abuse (but not clinical depression)
     Significant pulmonary disease
     Primary sleep disorders such as sleep apnea
    Non-exclusionary conditions:
     Some co-morbid entities commonly occur in association with ME/CFS. They include: allergies, fibromyalgia (FM), irritable bowel syndrome (IBS), multiple chemical sensitivities (MCS)
     Any medical condition that has been adequately treated and is under control
     Any isolated physical abnormality or laboratory test that is insufficient to diagnose an exclusionary
    condition.
     
    Valentijn likes this.
  3. MaryH

    MaryH

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    Sorry, wdb, should have been clearer. Yes, it is ME/CFS for 15years - now with toxoplasmosis and multiple chemical sensitivity diagnosed at Breakspear 4 years ago. Since then, DIY treatment ( she couldn't bear being in a hospital any longer - sure you know the score- bright lights, noise, anything and everything making her worse, including vitamin IV treatments which were supposed to make her stronger in order to tolerate anti virals. Never got there) including EFT, NLP, all the meditation and relaxation techniques to try to control symptoms that way. Latest crash really worrying as it manifested itself in a kind of 'paralysis', like she was having a fit but was conscious. This was the day before yesterday. She tried going without food yesterday to give her digestion a rest ( awful upper intestinal pains after eating).
    I just feel we need help and advice from the right person. I am feeling that I don't have the confidence to look after her adequately any more and I'm scared about what may happen to her.
     
  4. maryb

    maryb iherb code TAK122

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    Is it the treatment for toxoplasmosis that is making her more ill.
    I sympathise greatly - when I first went to b/spear the noise, the smells and the lights were practically unbearable. I have refined my diet dramatically since then, gluten,dairy,sugar,yeast etc free - I'm still ill and still have MCS and many food intolerances., but am more tolerant in general.

    Mould and house dust sensitivity I treated by getting a good house clean and then air filters.

    Did she have a food intolerance panel done? I spent the first couple of years on chicken, carrots, brocolli and rice (I don't eat rice now due to arsenic levels) its not the complete answer as I don't tolerate many that aren't on as those to avoid, I just go by how I feel.

    Kefir - need to use the best tolerated milk - I can't do dairy,soya, even goat's milk, just trying hemp.

    Stool sample? is she digesting her food - need to look:( Has she had the stomach acid test from dr My-hill?) May need betaine/pepsin comb. It help especially with protein foods.
    I've just started using Trienza enzymes - take one beforehand and can now tolerate a portion of gluten free oats.
    Any gut problems will make her feel so ill.

    Dr Weir?
    Prof de Merleir - depending on where you live may be able to do it without staying overnight, if anyone can drive, but waiting list will be 6weeks/2 months and then wait for results so not a now type of thing.

    So sorry I can't be of any help - so much suffering with this illness - we understand how you feel.
     
  5. Esther12

    Esther12 Senior Member

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    I'm pretty sceptical of breakspear and myhill, so wouldn't assume that the info/advice they gave you is helpful/accurate. Sorry to hear about your daughter, and I have no advice, other than to maybe reset, ignoring past medical advice for a bit, and just having her do what she feels like, in the hope that she'll be able to stumble upon ways of improving for herself.

    Sorry not to have more to offer. Best wishes with it all.
     
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  6. snowathlete

    snowathlete

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    In in the UK. Not many options here. Your best bet, in my view, is De Meirleir in Brussels if you can make it there.
     
    Valentijn likes this.
  7. Sasha

    Sasha Fine, thank you

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    Hi Mary, and welcome - I've PM'ed you - see little red flag on the top right of the page. :)
     
  8. MaryH

    MaryH

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    She was never treated for Toxoplasmosis as she was told it wasn't her most important issue and wouldn't be significant unless she became pregnant!

    She's tried many diets, including vegetarian, vegan, Stone Age, anti Candida etc. Now eating gluten and dairy free organic meals, mainly vegetarian but with the occasional meat/fish. So many conflicting thoughts depending on who you believe.We've recently been looking at juicing (Gerson) but the ingredients ( organic Kale in the UK in July?) are obscure and we've also read that the effects can be quite harsh. We've also thought about the whole coffee enema thing, but again, haven't been brave enough to go there yet. It's not the procedure - we've even had the odd joke about coffee breaks- but the worry about any reaction given that she's so sensitive to everything.

    Dust is something we're getting to grips with. We probably need to replace her mattress and vacuum under the bed etc. more often - so hard to clean the room properly when she is in bed most of the time.

    Yes, we did the food intolerance programme. Never got through the whole list though, as she wasn't well enough and it took a long time to find her 'end point' in each case.

    Trying almond milk atm. See how it goes.

    We haven't got anywhere with Myhill yet. Playing the waiting game. I haven't heard of betaine/pepsin or Trienza enzymes. Yes, she needs testing for sure. I gather that Myhill will recommend which tests are needed based on info in the questionnaire.
    She has trouble digesting all food. We've been reading about making soups with all the fibre removed.....but then look at a different site that says how fibre is essential for digestion! There's a lot going on in her gut.

    I will look up Drs Weir and Meirlier.

    Thank you so much. You've been really helpful and we both need the support.
     
  9. MaryH

    MaryH

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  10. MaryH

    MaryH

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    Only considering Myhill as we can hopefully get testing done from home, rather than having to go through the stressful upheaval and consequences of having to get somewhere. Can I ask why you're sceptical? Breakspear was an awful experience, even though the testing was thorough, and that was only an hour away!

    I hear what you say, and she has 'managed' on her own after a fashion for a long time. Seeing this sudden crash is just alarming.

    Thanks for your post
     
  11. MaryH

    MaryH

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    Thanks, snowathlete. Not surprised to hear there aren't many options. That's the main problem for so many sufferers over here, worse luck. Thanks.
     
  12. maryb

    maryb iherb code TAK122

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    Does she feel like she's swallowed a brick after eating?

    I did a few years ago - my stomach acid test was the lowest the lab has ever recorded and they offered to re-do it for free. Betaine is just hydrochloric acid (same as stomach)plus pepsin.

    Another Pr member told me about Trienza enzymes - good piece of advice for me, people on here are so helpful.

    When you're so sensitive though its hard to find supplements that suit us. I use Lambert's Betaine. worth a try.

    I have to say b/spear IVs do me the power of good but it doesn't last so the underlying stuff is not being addessed. Immunotherapy was the worst thing I've done in this illness - made my intolerances 100 times worse......another story:(
     
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  13. MaryH

    MaryH

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    Yes, a while after eating, to the point where she has to think hard about whether it's worth eating at all. Not the answer, I know. Last night she nibbled rice cakes hoping that would give her digestive system a break. She's still asleep right now ( upside down body clock) so I'll be interested to see how she is when she wakes.

    Thanks for the explanation. Really helpful. I will check out Lambert's Betaine. She takes 100ml of organic aloe gel daily and uses organic coconut oil for everything - both seem to help a bit.

    Immunotherapy ...... yes....took weeks, cost a fortune and didn't really get us very far. Nice people, but didn't seem to understand how to deal with somebody as ill as my daughter. She had to 'fit in' with their programme/routine - utterly exhausting.
    How awful it made your intolerances worse......
     
  14. Esther12

    Esther12 Senior Member

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    Edit: I do slightly backtrack from this post in my next one.

    Both seem to use unvalidated testing for things. I'm pretty sceptical of a lot of the claims made by those who make money from 'treating' CFS. I worry that a lot of interventions can make patient's lives more of a chore than is necessary, without bringing any real benefit. This is true for a lot of diet and advice IMO, and while some of it might work for some people, if you're not finding it brings real benefits, it's probably worth not doing it anymore.
    There can be political benefits to having a doctor on your side, but other than finding alternative diagnoses, I'm not sure if they can lead to real improvements in health for CFS patients.

    Some people have found trying different things leads to them stumbling upon something which they find helpful for themselves, but increasingly, I think that patients are best off just playing about and doing what they find feels best, without paying anyone for 'expert' advice.
     
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  15. maryb

    maryb iherb code TAK122

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    I have to say I don't agree with you Esther - we need tests to determine for instance whether we have bad gut bacteria - my gut issues were much better after a few different specifically targeted a/biotics,not the broad spectrum that many GP's will use.
    Dr My-hill advised me to take Betaine, my consultant g/enterologist had prescribed PPI's just a couple of months prior?? Of course this is just one area that a ME doc will focus on. No - no cure but I just think I could be a lot worse if I hadn't had the interventions.
     
  16. Esther12

    Esther12 Senior Member

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    I'd just come back to say that I thought I'd been a bit too broad. I'm typing on something that's really slow, awkward and unreliable, so that's my excuse for not explaining myself properly (also, pardon the typos if there are lots).

    I also forgot to welcome Maryh, and send my best wishes to her and her daughter.

    There can also be treatments for related symptoms which private doctors can be better for than the NHS, where there seems to be a real emphasis on having CFS patients cost them as little as is possible.

    I tend to only read psycho social CFS stuff, which is particularly unimpressive. I do think that considerable caution and scepticism is justified for all CFS interventions though, and that there is a real likelihood of many of them causing more harm than good.
     
  17. Plum

    Plum Senior Member

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    My experience in the UK is that you (unfortunately) have to do a lot of learning yourself. This is exhausting and very time consuming. I have spent the past 3 and 1/2 years learning everything I can when I have the energy to do so.

    My journey has involved getting functional testing done through a Nutritional Therapist (see BANT website). The tests they can get for you are from Genova - you can check out their website to see if any tests are suitable. I had thyroid, adrenal, hormonal, metabolic and digestive tests done with them. Then with the results I had to learn everything I could on the things that were out of balance.

    Along the way I have also changed my diet. For me this has had the biggest impact but I've had to do it slowly. Paleo with some potatoes for carb and bone broth. I have also done veg juicing off and on to increase nutrients. I did this after looking into Gerson Therapy and the Dr. Kelly and Dr. Gonzalez protocol.

    I have now been doing Perrin Therapy for 10 months and this does massively improve my symptoms and body's ability to cope.

    Things I have tried;
    Bowen Therapy
    Naturopath
    Acupuncture
    Chinese Herbs
    Glandulars
    Bioidentical hormones
    supplements
    dairy free
    gluten free
    fermenting foods
    bone broth with every meal
    walking

    I'm sure that there's some I've missed out! I have steered clear of GP's as they don't help. I use them if I need a referral for something specific. The stress they cause just isn't worth it. I think Dr. Myhill can be very helpful if you can go and see her. If not then to get tests done I would honestly use a Nutritional Therapist. Focus on the worst symptom and go from there. It takes a long time to get right but I have found that you feel a lot more in control of your health and don't get ripped off by 'specialists' who don't really know what they're talking about.
     
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