TANSY re mold in the UK your thoughts???

Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Aug 23, 2008.

  1. Bunchy

    Bunchy New Member

    Hi Tansy,

    Lisa's (slayadragon) posts have me very interested but I feel confused.

    This year I went the Lyme route with the Cowden protocol (didn't make any progress) and had to go on antibiotics for a UTI (made neuropathic pain flare hugely and don't believe that this was a herx as still in a flare four months later from 3 days of them!).

    I have been following Lisa's account of her progress getting away from mold and was wondering if it could be a problem for me also.

    Anytime I have managed to get away to the mediterranean on vacation (when it was warm and dry and I was out in the fresh air all the time and away from carpets etc in new hotels) I have felt heaps better.

    The improvements stay with me for several weeks after I get home and then my symptoms go back to the usual.

    Could there be something in the mold theory especially as we live in such a damp country?

    If so how can that be addressed in the UK? I'm not sure we have people here who could test for the type of mold Lisa talks about and even if they found it, what could we do with a huge mortgage and the housing crash? (no way of moving and especially not overseas)

    I just wanted your thoughts on this when you have the time and energy.

    Love Bunchy x
  2. Bunchy

    Bunchy New Member

  3. tansy

    tansy New Member

    Hi Bunchy

    Yes mould can be an issue in the UK; I know some severe ME cases who have issues with mould toxicity/sensitivity.

    Dr Sarah Myhill, and other doctors who work outside the NHS, are aware of how mould can cause health problems. Doctors who specialise in Environmental Medicine are more likely to recognise the presence of mould toxicity or sensitivity.

    tc, Tansy
  4. Bunchy

    Bunchy New Member

    Thanks but I haven't the money to see an environmental doctor in the hope that he/she just "might" be able to throw some light on things.

    I emailed a few of the better known environmental docs in London about a year ago and they only suggested things that I already know are not an issue for me. None of them talked about mould.

    Do you know how to find a good GP by the way? (sorry another question!)

    My new GP is so clueless - I saw her today and she doesn't acknowledge any of my weird symptoms at all.

    She has repeatedly sent me to pain clinics and physios who are just as dismissive if not cruel.

    She is now referring me to a rheumatologist as my RF is repeatedly high. I suspect that doctor will also have the same reaction to my illnesses. She also said my repeatedly weak positive ANA results are nothing noteworthy. When I said well why was my sed rate so high until recently as well, she glazed over again.

    She gives me my sleep meds and muscle relaxant but she's just not interested or supportive and very cold.

    I don't know how to find a better GP (without risking losing my meds which I simply can't risk).

    Love Bunchy x
    [This Message was Edited on 08/26/2008]
  5. thecatswhiskers

    thecatswhiskers New Member

    I'm a UK'er too ... is there anyway you could afford to go to The Breakspear Hospital (in Hertfordshire)? They take an all round approach, and one of the avenues is desensitisation to moulds etc .... I've just had testing for mould sensitivities and they were much worse than any of my food ones. Do a daily injection (or drops under the tongue) to neutralise against them.

    Have a good website if you Google their name ....
  6. tansy

    tansy New Member

    Hi Bunchy

    Thecatswhiskers's recommendation is a good one. In the past a few patients managed to secure funding to attend the Breakspear Hospital; however, many were turned down. A lot depends upon your PCT's policies. A request from a specialist/consultant often helps when requesting funding.

    I have had sublingual drops to help with other environmental toxins/sensitivities and they helped reduce the severity of my related reactions and symptoms. These were provided by a doctor who specialises in environmental illnesses; he was the one who also arranged my IV vit C but that was some years ago.

    Finding a decent GP is harder now due to the psychobabblers' influence and ability to get so much of their own work published whilst genuine specialists have great difficulty in having their papers accepted.

    Local groups can advise on GPs but you need to check out whether any recommendations would be right for you. Some patients are happy with the psychologising of ME/CFS because the theories of burn out, stress, poor coping strategies etc apply to them. Few GPs see ME/CFS as a predominantly physiological illness now; but there are a few exceptions.

    Many here, and on other boards, had to go for extreme mould avoidance to ascertain whether it was making them ill. They've posted extensively on how they went about this. I'm not currently persuing this so am not the best person to advise you on how to go about identifying and addressing mould sensitivity or toxicity.

    The local Rhematology Dept failed to identify my additional mechanical problems because most of them see ME/CFS as a somatising disorder; they have missed the obvious in other patients with ME/CFS too. You may be lucky though; worth a try just in case there's something else going on that's been missed.

    tc, Tansy
  7. Bunchy

    Bunchy New Member

    I got turned down for the breakspear and can't afford it privately but I will see the rheumy just in case.

    This is all just too complicated isn't it!

    Thanks for your posts tho.

    Love Bunchy x
  8. tansy

    tansy New Member

    Yet it need not have been this way. Things were progressing well until the psychobabblers' hypotheses became a more attractive proposition for the policy makers.

    I sincerely hope your rheumy appt goes well.

    My last hospital based appts were with a surgeon, neuro, and anaesthetist; my ME was only a factor in terms of my anaesthesia and for once my Dx did not adversely influence clinical decisions. Even better my surgeon wrote to my GP stating the consequences of a referral to him at such a late stage. Got it in writing this time without even having to ask.

    tc, Tansy
  9. thecatswhiskers

    thecatswhiskers New Member

    ...... yep, I got turned down for Breakspear PCT funding ... well, I tell a lie, I didn't even get that far as my GP refused to support the application to the PCT (there is a name for him but I'm far too polite.). I have met quite a few at Breakspear that do get NHS funding, but they seem to be more from te Yorkshire/ Lancashire region .... I'm home counties and noone from this region seems succesful unfortunately. Breakspear do have their own trust that can give out payments for treatment if you apply, but I think it tends to be a one off payment which in reality would only fund a very limited part of you treatment unfortunately. It's a pity as they're SO good and investigate so many different areas.

    There are a few NHS allergy specialists aren't there? London based? Might that be an avenue to explore? Tough one isn't it all? :( I can't really afford Breakspear, but they are giving me the 1st real hope in 21 years of being ill .... I just do the cheapest treatment route I can there, and at my own pace. Their prices are actually very good when you compare, it's just that so much gets investigated you end up needing quite a few treatments!

    And don't even get me started about GP's! :(
    [This Message was Edited on 08/28/2008]