Desperate for diagnosis!

[Nomansland67]

I am 51 yrs old, living in a Stachybotrys infected council flat in the uk, I can't get a proper diagnosis despite having a lab test to prove what strain is present. The council wont do anything to remedy the water damaged building, instead blaming tenants lifestyle and dodging the real issue. It's basically killing me slowly, none of my friends or family believe what I'm suffering and I've been prescribed itraconazole for 2 yrs which just about hold stage 4 at bay...currently my symptoms are escalating with fevers, chills, loss of appetite, skin, nail, scalp infection, brain fog and heart palpitations. If thats not enough to convince my local MP local councillors and housing dept, all who have been made aware of the situation, I'm better off dead cos our legal aid for cases like this has been stopped, so landlords are getting away with slow poisoning murder on a grand scale!? Both prior tenants became ill, I gave the council a signed letter from one, stating they ended up being admitted to hospital with a serious fungal infection.Still no help. I am at a loss as to how to go forward, i have exhausted the NHS with biopsy, lung investigation, blood tests, and all they can offer, which is not sufficient to be diagnosed! This country is a mess, if the council did their jobs right-I wouldn't be wasting nhs time and money, all the tenants would get better. Why is this system so backwards when we live in one if the most advanced places in the world apparently? Apologies for the long text, 4 years of pent up anger and fungal mould infection rage had to be expressed.

[Minushabens]

The first thing I'd advise is to approach a Law Centre or CAB if there is one. I worked in & around housing & homelessness for many years, & I'd say that it's not really about the council not doing their job, but about finding out whose job it actually is & targetting them.

I don't know where you live (you are welcome to PM me if it helps) but there isn't really such a thing as council housing any more other than in a handful of places, & what version of housing you have makes a difference to the way to approach it. A scattergun approach of MPs & councillors will only be as good as they are as representatives, which in truth might not be very good.

It's likely that your housing is provided by (don't worry about the acronyms) a fully privatised LSVT organisation or a semi-privatised ALMO. You need to find out who their CEO or Director of Housing is, and set out clearly the problem, the remedy you expect and the course of action you will take if it is not remedied (without knowing all your details, legal action under the Equalities Act &/or enforcement action using Environmental Health legislation would be potential options). This is where the CAB or Law Centre can help you to focus on pressing the right buttons.

Good luck.

[Nomansland67 in reply to Minushabens]

Thanks for all that info, I cant go to cab as ive been to ombudsman who favoured the council, its east kent housing in canterbury so I'm up against a cathedral mentality they all stick together and leave the poor to rot.

[Minushabens in reply to Nomansland67]

Apologies for being slow to reply; I've been a bit snowed under with work this week.

One possible resource I did find that might be useful for you is the Kent Law Clinic (kent.ac.uk/law/clinic/). It's not a full-blown law centre but should address some of your 'conflict of interest' concerns.

I know from many years in the housing world that most social housing providers can suffer from an inertia when it comes to this sort of problem, but tend to wake up when legal letters start to arrive.

Your landlord is what is known as an ALMO (Arms Length Management Organisation). This means, in essence, they are independent of the council, but in practical terms owned by them (sounds contradictory? You're not wrong!). Anyway, in terms of the housing side of things, my strong advice is to be really clear and focussed in your approach to them, which is where someone from the Law Clinic can help. You won't get an argument from me about how these organisations can leave the poor to rot, but it won't win any arguments with them I'm afraid.

When I was a senior manager (it was a charity providing housing for socially excluded people such as offenders, addicts, etc.) a letter telling me that I was breaching their rights under equalities legislation by making an identifiable medical condition worse through sub-standard housing would have kept me awake at night!

[Nomansland67 in reply to Minushabens]

Thank you very much I will contact the law centre, I really appreciate all the information everyone is helping me with, this infection is horrible, it seems to exclude people suffering it as mad! I can't imagine how many humans are going through the same hell...in the USA, it wouldn't happen they have laws against landlords, and medical diagnosis on hand, and we say we're a leading country, what a joke! America's been using paper bags for how long hahaha, we are so behind its almost heading into medieval times again! Discease, wars, abuse, genetic meddling, tech gone mental....scuse the tangent talk..my mould ridden body has had enough. Only people who know what a toxic fungal infection feels like can understand. Its lonely being undiagnosed and misunderstood. It caused depression, aside from all the other symptoms. Despite feeling like giving up each day it continues, my resolve is to get help, not only for my situ but the other paying tenants all getting ill too.

[GAtherton Administrator Fungal Infection Trust]

Hello Nomaslands

From your letter my understanding is that you have not been diagnosed with any specific ilness? In your situation that is not particularly uncommon as there is no distinct diagnosis related to living in a damp home, The illnesses are mostly respiratory & sinus so you would be expected to get cough's, wheezes, runny nose, headaches and so on, not to mention asthma. If you don't have those symptoms or some like it then doctors will struggle to give you a firm decision.

Likewise about 90% of damp living conditions can be mainly caused by lack of ventilation in your home, so landlords will try to put the emphasis back on yourself to prevent the problem with some justification, so until you can say that you have carried out steps to show that you have increased ventilation (eg open windows during cooking, washing, showering until no moisture is present) they will be resistant to change.

You need to achieve two things (which is what you have been doing)

1. Proof that your home is damp and why it is damp. There are many possibilities and I have personally experienced a house (built pre1900) that used to be a worker's home 2 up 2 down with rattly windows and an open fire. It had been modernised to try to prevent heat loss (restricting ventilation), extended to provide new kitchen & interior bathroom and then the internal floor plan changed which restricted airflow in several rooms. The final insult to the old building was to use cheap wallpaper on the inside of solid stone walls. In the 18 months I lived there all was OK until we got to autumn whereupon despite opening all windows most of the time (I am after all something of a mould specialist), drying clothes outside etc the upstairs rooms became covered in moulds. Two out of three of us of us became ill with respiratory infections.

Damp in homes is a complex issue, the tenant has to accept responsibility BUT there are clear examples when the house - designed by the landlord - is also unsuitable to be lived in.

There are any number of 'damp surveyors' listed in local business directories and many of them are experienced and very good, but there has always been a risk of employing someone who is not very good, inexperienced and focussed on generating as much work as they can for themselves. I would suggest contacting the Institute for Specialist Surveyors and Engineers who run a service that ensures that you will get a professional, experienced surveyor to look at your home. isse.org.uk. Your local environmental health officer should also be supportive.

2. Prove you have an illness! If any occupants have any of the symptoms or illnesses listed above then they are related to damp, Doctors can look for IgE as well as IgG blood tests to test for mould-specific allergy or infection. Chest x-rays can also be helpful. Specialist respiratory centres at Manchester (NHS National Aspergillosis Centre nationalaspergillosiscentre... and London (Bromptom) should be able to detect signs of contact with moulds but there are some symptoms that they cannot test for.

At the end of the day your cure is to find a dry home. You should not stay in a home that is harming your health and even if you are diagnosed that remains the case because doctors cannot hope to improve your health if you are still exposed to the damp. Sadly all too often landlords will not change their ways despite you spending a lot of time and money persuading them. Your health is too important to wait. In my case, I moved out as quickly as possible.

[Nomansland67 in reply to GAtherton]

Thank you so much for your response it was very helpful, I am about to visit my housing office to fill out the register and supply them with all the backdated medical evidence, in the hope they will finally move us. The previous tenant who I met, ended up with a serious fungal infection, had to go to hospital for various treatments to try and cure it, she informed the council back in 2013, they moved her cos of the proof, then immediately moved another family with a child in! They got ill, tricked me into exchanging, I was unaware how bad it would be at that point, during our 1st year, everything grew mould on, I put a comp claim in, the council paid out for damage, did a damp inspection, resulting in their usual claptrap, 'tenants responsibility etc', after lodging a complaint re my health, I carried out a petition, found 28 out of 54 properties nearby, all had damp and mould issues, this was sent to the chief exect of housing, they just wormed their way out, did small patch up jobs, instead of the remedial work required.

I've had enough....have stopped taking my antifungals, 3 yrs is plenty of proof its affecting not only my health severly, but our pets and anyone who stays for long periods inside the flat.

Most other tenants are not relating their illnesses to this stach strain, so I'm up against a brick wall of resistance from the local auth, and ignorance to whats going on here!

I even went to the local paper who made me sound like a mental patient, it had little affect, our block is nearly 40 yrs old, asbestos paint on ceilings, inadequate cavity walls that hold the moisture, flat rooves, shoddy windows with tiny trickle vents that dont help. My flat has no doors, apart from bath, bog and 1 bed, the rest is totally open plan, they cannot keep saying its ventilation, ive had 2 humidity vents put in, and another electric one that uses a £1 per 5 hrs, it detects moisture so can be on for 18 hrs a day....all in aĺl a sad state of affairs, our country is in a terrible mess, no legal aid, I'm ill so can't find work, been to ombud so cant use cab?? Every avenue is a no no, if i could afford a survey, this corrupted council would demand their own one which of course would differ....I am resigned to die in this prejudicial home.....told my people to get a full autopsy to show what killed me hahaha apologies my sense of humour is pure toxins...

[Nomansland67 in reply to GAtherton]

I have no money and nowhere to move to either by the way, my eldest took me abroad last year for 2 mnths, got better, and as you say, once back in the mouldy environ i lost loads of weight and look n feel like hell again, the worst is family friends or others who simply do not believe I'm unwell. My catscan came back fine, so did a fungal lung wash, nothing? Maybe the cbd oil has helped plus my meds? This is why i am so desperate, my body is breaking down, kidney pains, tremors, brain fog and lethargy or sleeplessness.

If my bladder is full i get fever that dissipates as soon as i empty it?

[nnanyamka in reply to Nomansland67]

Hi Norman, I read your story and would like to help you if I can w/ a multimodal approach to the illness. I am struggling w/ black mould infection and have endured many calamities as a result. I have found some strategies that have reduced my mycotoxin levels w/o harm to my major organs. I have read a lot of stories here, but have never reached out to anyone w/ my approach which has reduced my mycotoxin levels to negative 10x. I visit my physician every 3 months for testing, especially liver function because mould produces acetaldehyde within the liver as it ferments the sugars we eat. this causes high oxidation of cells and result in a form of intoxication and brain fog as if you are drinking alcohol. These horrible fungi eventually kills us through the breakdown of our immune system and damage to our organs, which is what mould is designed to do & that is to reduce its prey back to the source. If a lot of degeneration is in process (cellular, ie oxidation, inflammation), the assumption is that you are more dead than alive and it performs its natural function and continues to disengage the major defense mechanisms that fight to restore life...I know this story very well because I lost my beautiful 19 year old daughter to mould poisoning in 2012, after misdiagnosis after misdiagnosis...I am determined to find out everything that is within reach to save myself and others because no one loves you more than you love yourself and not 1 doctor will visit your funeral. You will be just another statistic...

[Nomansland67 in reply to nnanyamka]

That is so moving, thank you for reaching out to me, I am devastated for your loss, it's so wrong, to have your loved one taken so cruelly because of a deadly environment! The bible, not that I'm religious, somebody showed me, says in 2 different parts, humans will die in their masses from mould. Having had it happen 3 times, in 3 diff homes, I am at the point of screaming from the hilltops, as like your situ i cannot get diagnosed unless I pay huge amounts of cash.

As for taking 400mg of itraconazole for a week every month, 2 yrs is long enough? Any help re diet is gratefully acknowledged.

My thoughts are with you thanks again for taking the time to answer my dilemma.

[nnanyamka in reply to Nomansland67]

Hi Norman, thank you for your response. My story may have began w/ a theory after my "sweetheart" passed; but no longer. I lost virtually all my hair in 2016, developed swellings on my head and dark spots on particular areas of body, frequent urination and visual disturbances alongside brain fog and depression and involuntarily lost about 10 kg.. Finally, got a diagnosis after being misinformed by specialists and told I am ok. Fast forward, 75% of hair restored, all swellings dissappated except 1, brain fog under control and blood sugars due to experimentation w/ various nutritional formulas created by myself. I am not totally free of this detrimental illness, but live a normal life free of drugs. I have to stay on it. However, at this stage, I am alive and have decided to totally integrate my regular lifestyle w/ my antifungal regimen. Thus, a new lifestyle, whereas everything I engage in has an antifungal component,. This opposes the traditional medicinal approach where one isolates the attack on the "villain" in a "Kill-Kill" focus, without a modification of lifestyle. My observation is that once you have been heavily exposed and colonized by a fungal outbreak, one must take necessary precautions to maintain a stable balance within the body's cellular and intestinal microflora infrastructure. We will never win this war with a "Kill-Kill" approach. We must create balance within our bilological & external environment. This "Kill-Kill" approach is the very reason we have a "tidal-wave" of resistance to normal antidotes in mainstream medicine. I understand your financial dilemna and will share freely what I have found to assist my healing, if you have interest. I must add that my approach requires discipline, patience and a motivation to live. You may pm me anytime and I will share as needed. I wish you well on your healing journey. warm thoughts.

[Nomansland67 in reply to nnanyamka]

Wonderful post, so informative, def will add natural fibre to my diet, which as the stachy infection causes complete loss of appetite, is at its minimum, it makes the body crave caffeine carbs and sugars, such a vicious circle, yes indeed discipline is very much needed, I am at the stage where my teeth are cracking, ice pick pains in my nerves, and daily brain fog. A few months back we had some activated charcoal, it did help but as with every item, it costs to self treat and yesterday the antifungal meds were my only saviour, beyond getting diagnosed, the local council are refusing to take responsibility and our medical services lack proper testing, its almost as if a person here has to be near death before someone helps!

There is a patch of dark skin also thats been there over a year, my nails are a mess so is my scalp, living within a deadly environment that I cannot tackle alone, the whole estate is affected, multiple tenants have complained and nothing is done. A brick wall would be good for bashing heads into.... but as you rightly say, cant kill what we've created to live in, unless its a maintenance issue as ours is, water damaged buildings can make people seriously ill.

So glad you are on the mend, thanks again for all the support, its invaluable when suffering alone, my family think I'm making it up or its my age! Trying to convince them its the mould is a joke so i dont bother, other sufferers must feel the same? Like a broken record going on and on...bless u tho, and wish you all the best.

[nnanyamka in reply to Nomansland67]

Norman, you are truly welcome. Anything I can do to assist, I am honored to do so. Now, I beg you to please find a temporary living space that is compatible with sound health. Blessings!

[GAtherton Administrator Fungal Infection Trust in reply to nnanyamka]

I think what you are suggesting here stems from suggestions made by various organisations who publicise the theory that the fungus Candida can overgrow in our gut and who then charge you to reduce this growth.

I think this highlights the poor diets many (most?) of us maintain as eating too much in the way of processed carbohydrates and much too little in the way of foods based on plants which are rich in fibre are increasingly thought to cause a range of symptoms in our gut and beyond. The answer isn't to see an expensive therapist, the answer is to eat better.

This diet is designed by the UK NHS to help people eat better and lose weight, but even if you don't want to lose weight the principle is the same, think about fibre! nhs.uk/live-well/healthy-we...

No need for drugs, if you restore a healthy diet over time you may be surprised at how things change - NB plant fibres are also very good at absorbing toxins including mycotoxins and will reduce your exposure.

[nnanyamka in reply to GAtherton]

Thank you for your reply which I hope will be helpful to many on this forum. Actually, I am a Nutritionist/Biologist w/ 2 years medicine and find the fiber requirements to fall short of what our body's require to maintain a healthy state. I am ingesting 60-80 grams of natural fiber daily and find it very beneficial to my condition. I suffered from an overgrowth of fungi, indicated visually through my opaque/whitish tongue, which is now a beautiful healthy pink w/o oral fractures which I endured for several years. This a key component in healing.

[Nomansland67 in reply to nnanyamka]

Such a shame the UK is so behind in dealing with deadly mycotoxins that can actually kill, or make humans so ill....

America was one of our brainwaves wasnt it....way ahead of us now! The irony huh,

[Rameysearth]

I'm in usa and I feel your pain and aggravation. I'm afraid I'm dying and no one will help me. My friends think I'm crazy and I'm near suicide