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has anyone seen Dr Stewart in Sussex (UK)?

Discussion in 'ME/CFS Doctors' started by Raines, Sep 15, 2015.

  1. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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  2. Uno

    Uno Senior Member

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    Yes I know Dr Alan Stewart very well he was the first one to diagnose me with an IgG subclass deficiency - however he's turned to the dark side. He runs the NHS Sussex Clinic and believes ME is part psych but he will do a thorough mineral and vitamin analysis and other bits and bobs. Give it a shot. He is OBSESSED with weight. If you are overweight he will force you on a special diet and make you exercise which could be dangerous so it's your choice. I am setting up a service down here if you hang on another few months - I know a great doc in Brighton if your interested please PM me.
     
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  3. Cozi

    Cozi

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    Hey Uno, I'm a Newbie on here (literally today) I'd be interested to know the Dr you recommend in Brighton. Not sure how to PM....?
     
  4. MEMum

    MEMum Senior Member

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    Hi Cozi, welcome to PR.
    I think you message someone by going to Inbox once you're signed in and pressing new conversation...
    Also if you refer to someone as @Uno or whoever they will get an alert that someone is trying to get in touch.
    Good Luck
     
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  5. Jenny

    Jenny Senior Member

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    I saw him in 1985. Gave me lots of tests for nutritional deficiencies and sold me lots of supplements, which I took for 2 years with no improvement. Nice man though, and he clearly thought the problem was physical.
     
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  6. hellytheelephant

    hellytheelephant Senior Member

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    I saw him in mid 90's- it wasn't helpful for me....but different things work for different people.
     
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  7. wiltedflower77

    wiltedflower77

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    Hi Raines,

    I'm new to posting on here but just saw your post about Dr Stewart. I saw him about 5 years ago. He did the usual mineral blood tests which showed I was low in Zinc and also Coq10. He didn't seem to believe in Adrenal Fatigue and dismissed an adrenal stess profile test I'd previously had done. I took alot of supplements but haven't felt any better in 5 years since I first started feeling unwell. He was nice enough but I personally don't think he is that open minded to 'new treatments and research' etc. Does anyone know of any good naturopath/ functional medicine practitioner. I'm near Brighton too.
    Thankyou
     
  8. Cozi

    Cozi

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    I've had similar experiences - and would also be grateful to know if anyone can suggest a good doc in the Brighton area.

    Dr Stewart is a really nice man. But aside from adrenal fatigue he also doesn't 'believe' in candida, pyroluria, kickstarting methylation or heavy metal toxicity, unless you've worked in industry or something. Also he didn't wash his hands before taking bloods from me, despite having seen patients all day and just prior to this feeling the glands under my arms! (Yuck)

    I don't want to bad mouth anyone, and the nutritional tests he did were certainly useful. I too was low in zinc, but am having horrendous trouble supplementing it and received no support/advice beyond lower the dose and keep taking it.

    My advice to people would be not to bother unless their health problems only require minimal intervention. I have an appointment tomorrow at The Burghwood Clinic in Banstead. I think it may be a long shot but I'll report back.

    @wiltedflower77 Welcome to the forum :)
     
  9. wiltedflower77

    wiltedflower77

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    @Cozi thanks for the welcome interesting to hear your experience with Dr Stewart too. Have you ever done a test for pyroloria? I suspected I may have that and did a kryptopyrole test and it came back normal. I have been taking zinc citrate 15mg X2 a day for years now but haven't had my zinc levels retested in a while so not sure if it's normal now or not. Good luck with your appointment at Burghwood Clinic. Let me know if it's any good if you have the time. I have done the 23&me testing and would like to find a practitioner who knows about methylation and detox stuff. Bye for now
     
  10. ryan31337

    ryan31337 Senior Member

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    Hi all,

    I saw Dr Stewart last year at the NHS Sussex ME/CFS clinic. My experience mirrors other's here, considerate & engaging guy but ultimately working with his hands tied, especially if seen in the NHS clinic. Even though he can't really do anything medically, you might find him useful for justifying your position to GP/others.

    What impressed me most was the time spent with me (1.5hrs!) and the willingness to discuss the bigger picture like clinical definitions, unproven theories, Rituximab etc. with me as an equal. Incidentally he dissuaded the use of RTX until the phase 3 trials are out as he assumes it'll only help ~10% of patients.

    Ultimately it was helpful because I got taken seriously and had a very thorough history written up for my GP, along with heaps of praise for my accomplishments during better periods of health (20 years of fluctuating ME). It makes me angry that this influences doctors but as a result I do now get taken more seriously as my referral letters are prefaced with "this gentleman is a scientist with a 1st class honours degree". Like that should matter... :mad:

    He gave clear instructions for my GP to sign me off long-term and made absolutely no mention of CBT/GET. He was also the first person to screen for OI and upon finding a problem recommended I be investigated for that, which has actually turned out to be a major help to me. Ironically he had to preface the OI recommendation with "this is not normal advice for CFS patients but will be valuable in this case"... such are the ridiculous NHS restrictions.

    I should also add that a psychologist sat in the consultation. I was expecting the worst but she was actually very good! Mostly kept quiet but was caring when she did occasionally speak. She pushed for complete rest during flare up and made no recommendation of CBT/GET. She scoffed at Chalder and her ilk when PACE came up. She even sided with me on CCC/ICC over Fukuda/Oxford when we were talking about definitions. Unfortunately the same can't be said of the clinic Occupational Therapist I had to go through first to get to Dr Stewart - the OT towed the line, pushed PACE as solid evidence and gave the solid impression of sickly-sweet professional courtesy with zero care/belief behind it.

    Ryan
     
    Last edited: Apr 5, 2016
  11. ryan31337

    ryan31337 Senior Member

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    As for other doctors, take a look at my thread here: http://forums.phoenixrising.me/inde...ll-very-promising-pots-treatment-in-uk.43598/

    You'd have to get to Croydon and you'd presumably need some OI symptoms to get your foot in the door, however OI is very common and like me you might not even realise the significance of it in your established problems. This isn't specific treatment for ME/CFS but the chances are you'll be able to get some help and at the very least symptom relief & further testing because the label of ME/CFS won't be mentioned and doors will remain open... convenient :D
     
    Last edited: Apr 5, 2016
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  12. wiltedflower77

    wiltedflower77

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    Hi @ryan31337 thanks for sharing your experience too. It's really good to hear how other people are managing with finding treatment or lack of it. I saw Dr Stewart privately for help with a few health problems I have. This was before I thought I may have CFS. 5 years later when I finally got through to the assessment with Sussex wide CFS Clinic I was then sent a letter saying they could not diagnose me with CFS because I suffered from anxiety as well. They told me to pace myself and use CBT strategies that I learnt to cope with the anxiety. I was pretty angry about their response!! Anyway that was a year or so ago. What actual treatment did they offer you at Sussex CFS Clinic? Also in your post you mentioned OI symptoms. Does OI stand for orthostatic intolerance? I have talked to my GP about POTS and he is referring me to a cardiologist I think. I wasn't sure if it would be worth it as I was under the impression that the treatment for it was beta blockers and I can't take them due to them giving me low mood and am also asthmatic. I'm definitely not blessed with a scientific brain so trying to be my own doctor\specialist is a very slow and arduous journey. :(
     
  13. ryan31337

    ryan31337 Senior Member

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    Hi @wiltedflower77,

    Sorry to hear that they messed you about. From what I gather your's was very much the experience of the OP too when she went to see them. Pretty much the first thing that Dr Stewart said to me was that he doesn't usually see the clinic patients! I think ultimately he knows he can't do anything for them, not even testing, so what's the point? I guess he made an exception for me because I was relapsing after a long period of good functioning, so it was probably because of concern over a new non-CFS development that he could identify and/or his own personal curiosity in long-term CFS patients.

    I wasn't offered any treatment or investigation, just recommendations of increased therapeutic rest/pacing and the supportive instructions to my GP. He said there was no point in me attending the CBT/pacing classes because I'd been there, done that and learnt it all as shown by my previous partial recovery. He subtly nudged me in the right direction, told me I had to be my own doctor, to seek help for things like OI that aren't locked down like CFS/ME is. I assumed that if I saw him privately he'd want to do nutritional/allergy testing etc. too but this just wasn't allowed in the NHS clinic setting.

    Yes, OI is Orthostatic Intolerance, of which POTS is just one type. There's a very good chance you have at least one type of OI going on, I recall figures of ~40% of ME patients being affected. You're correct, beta blocker is one line of treatment for POTS. I find them very helpful as I have the type of POTS that results in too much adrenaline being released, which leads to high blood pressure and uncomfortable anxiety-like sensations when upright. It's possible your anxiety problems are caused by POTS without you realising, primary anxiety is very commonly misdiagnosed in POTS patients. There are other medicines that might be better for you like Ivabradine, as well as other approaches like boosting blood volume. It is well worth investigating further, when I discovered the significance it was a real light-bulb moment that explained a big part of my illness over the years. Take a look at the pages and download the leaflets from here: http://www.potsuk.org/what_is_pots2

    Good luck! :)
     
  14. wiltedflower77

    wiltedflower77

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    Hi @ryan31337 thankyou for all the info. Sorry to hear you've had a relapse. Hope you get better again. It's good to hear about your success with POTs and that the beta blockers help you. I do find they ease off my anxiety considerably but they also make me feel low and more tired. I will look into the info you emailed. I have been prone to anxiety since I was young but when since i became unwell it's just gone off the scale totally!! Bye for now :)
     
  15. Cozi

    Cozi

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    @wiltedflower77 - sorry it's taken so long to report back on my experience at the Burghwood Clinic. Have to say I was impressed, I saw a guy called Dr Appelles Econs (may have spelled that wrong). He was very understanding, said he loved it when patients were well read on their condition, with knowledge of MTHFR etc. Not my general experience of doctors!

    I'm now having all the tests done that I wanted but was told I couldn't have/didn't need, including metal toxicity and CDSA. It's costing a small fortune but having been ill for 18 years there's nothing I want more than my health so am willing to pay out. I'm sure pretty much everyone on here feels the same.

    In answer to your question, I've never had a Pyroluria test - interesting that yours showed a negative?

    If I were asked to recommend the clinic I would, it's nice to be taken seriously and also the staff were extremely helpful when I randomly passed out in the waiting room afterwards. (joy)

    Only 'downsides' if I can say that, are: It is primarily an allergy clinic, although Dr Econs was mainly talking about viruses and Th1 etc (not something I know much about - yet :nerd: ) Also the cost - a 1.5hr initial consultation was just over £200, excluding tests.

    There's another thread here for general discussion of doctors so I'll copy the gist of this long winded post there :)
     
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  16. Cozi

    Cozi

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  17. wiltedflower77

    wiltedflower77

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    @Cozi thanks for your reply about your appointment. Glad it went well for you. Sounds promising. Do you mind me asking what tests they do? And what treatment do they use? I am seeing a medical herbalist locally who is training in functional medicine and knows a bit about methylation and mthfr stuff. I'm doing an organic acids test and metabolic profile next week. Just worry that it's just another test that will be a dead end like the previous ones I've done. Thank you ☺
     
  18. Cozi

    Cozi

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    @wiltedflower77 sorry again for the late reply!

    No problem - Haven't any results yet but I had blood tests for: DNA Adducts, metallothionein, toxic metals, plasma element profile (minerals) and something called Body Blood Bio test. I also had fat taken from my bum (shame they couldn't've taken a bit more ;)) for a Fat Cell Pesticide test, and then a CDSA with Parasitology. These are just the tests I had, but I'm looking at a sheet here which lists 2 sides worth. They use Acumen, Genova and Biolab among others.

    Let me know if you'd like the full list of what they offer and I could scan it and email you. Coincidentally Dr Econs was on TV the other night on a show called Medical Mysteries on channel 5 (UK)...

    Good luck with the herbalist, you're fortunate to have someone like that nearby especially if they're clued up on the gene SNPs. I know the feeling about dead ends! Really hope you have some success :)
     
  19. wiltedflower77

    wiltedflower77

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    Hi @Cozi thanks for your reply. Sorry it's taken me awhile to get back to you. Went to see an osteopath and made me feel alot worse!! Healing crisis apparently!!! Just wonder if I'll ever come out the other end of it !!!!:( Would be really interested to know all the tests they do with Dr Econs. If you could email it to me sometime that would be great. Shame I missed him on the medical mysteries program. Watch that alot. I'm not sure how far I will get with my medical herbalist. She is great but just learning about methylation and SNPs herself. So progress is probably hit and miss. Thanks again for letting me know your test details. Hope you get some results soon. :)
     
  20. Uno

    Uno Senior Member

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    Sorry for the late reply - Dr Stewart has changed. I explained methylation and HHV6 to him but he wasn't interested - now he's aligned himself with Barts and Peter White - steer clear although am going undercover in this clinic to see what it's all about!!!!
     
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