Struggling to get a diagnosis. - Aspergillosis and...

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Struggling to get a diagnosis.

spacegirl1978 profile image

I have been trying for the past five years to get a doctor to take me seriously but it seems uk doctors have no clue when it comes to mold and mold infection/illness. The building that I have lived in for twenty years from the age of seventeen is water damaged plus the materials used to build it are now known to cause all sorts of health problems. The floors walls ceilings and the old blow out heating system that I used for years all contain asbestos and the heater is condemned. I have been in and out pout hospital over the years with a host of illnesses from eye infections all the time lung infections fertility problems cellulitis you name it I've either had it or have it. But things became really bad a few years ago after ( I've since discovered) I'd had viral infection. I know for a fact that my home is full of mold spores that destroy everything including me it's in me my lungs it affects my mucus membranes and extremely badly my skin. I know it's killing me but the doctors won't listen claim I have atopic eczema......bullshit. I have legions all over my body that started with a little blank speck years ago. Sorry. I tried to get three council to look at my home as I had a black patch of mold and was told it's not much just clean it. I wouldn't worry about it but I have two daughters that this is also affecting and that is breaking my heart. Please can someone help me be heard and helped I can't take this much longer. There is so much more I could write but it would take too long.

HELP

20 Replies

Hi

There are doctors out there that can help, unfortunately there are few.

In my search to get help and to be listened to I was recommended to go to Breakspear Medical, which is based in Hemel Hempstead and who specialise solely in environmental illness and treat you holistically rather than by allopathic medicine (ie conventional medicine). They are licensed to take NHS patient, but unfortunately, as I had to find out, you have to be referred by your GP and my GP practice at least for the time being are not prepared to provide the funding, so I have had to go private.

Breakspear arrange for a complete Mould panel blood test, which has confirmed that I am sensitive to all the moulds tested for. I have brought the results to my GP, but alas instead of now considering me for funding so that Breakspear can get on with my treatment and further tests, I am being referred to the the hospital for infectious diseases, which no doubt I will be placed on antibiotics and all other pharmaceutical drugs and treatments, with their many side-affects. It is a round that I do not plan to go down and will continue pressing my doctors for funding. The sad and cynical thing is that the costs to go convential will be much higher than going to the Breakspear. I believe the conventional medical system is upside down when it comes to chronic illness. It treats the symptoms but not the cause.

Healthy House, who have an understanding of environmental illness, through personal experience, recommended me to Breakspear Medical. They are happy to talk to people who have concerns, which I did and I found them to be invaluable.

Sadly I have been eating up what little savings I have to get help for my condition and many symptoms I am suffering as a result of mould, but my health is important. I hope my GP will listen to me and take the proper action.

I also found found the website Surviving Mold very helpful as is full of information. The site was created by an MD in the USA who found himself dealing with patients that were suffering from mould/sick building illnesses.

You may like to give these organisations a try, which I have linked their respective websites?

breakspearmedical.com/

survivingmold.com/mold-symp...

healthy-house.co.uk/

I hope the above helps and Good Luck. x

Thank you very much for this extremely helpful information. I have just now booked an appointment with my GP so fingers crossed.

I sincerely hope you get the help you need.

I once went to the hospital for infectious diseases and was told they would not even look at me as I had not been to another country even when I then went to A and E and got them to refer me so I'm really hoping they don't treat you the same shocking way.

Thank you again.

Stacey x

Make sure you do your research before seeing your GP. I am afraid that you may have to be a bit humble in your approach as you do not want to be seen as knowing more than your GP. I pray you have an open-minded GP who thinks outside of the box.

Good Luck

x

Re the hospital for infectious disease, to be honest I am not expecting any good from them apart from getting the blood tests done, which from what you are saying even that might not be possible as I have not been overseas. When my doctor saw how much I paid privately and what other tests I had not paid for, she felt for me and is sending me there because the blood test confirmed that I had an issue with mould. The GP said the other blood tests that I have not done, as yet, that hospital should be able to do them. We will see.

The blood test that I had done was called Comprehensive Mould Panel IgE & IgG and cost me £287 plus the consultation fee of £220. The tests altogether cost over £2,500, which I cannot afford. So just getting the one test may be worthwhile just to convince your GP that there is a serious problem. I took another test called Total Mycotoxin Panel as I was advised that of all the tests these 2 should be compulsory. I do hope you are able to afford this expense it required.

When I first asked one of the GPs for the tests that I believed were required, she said that I could not get them on the NHS, and of one of the tests I was told it was only available I had Spondylitis. In the end I said I will have to go private and the GP she said that she did want to help and sent me for a full blood count test (FBC), which I believe an FBC a misnomer and serves to hoodwink patients with illnesses that in time will become worse. I hasten to add the results came up normal.

If you have diarrhea, as I have, which is one of the possible symptoms of Mould Illness, do not even consider a Colonoscopy without them first carrying out a proper stool test. This advice came from my Environmental Doctor. The test is called: "Comprehensive Stool Analysis w/Parasites x3" I found out from the Consultant at the NHS hosptital who I was referred to by another GP for a Colonoscopy, that they do indeed carry out that test and your doctor has to submit the correct form for this. The Consultant also confirmed that the standard stool test that your GP carries out does not analyse fungi and parasites. It only looks for bacteria.

Please let me know how you get on.

Just remember that if you don't ask you don't get and go with assertiveness but show humility while doing so. It is your body and your health.

Again good luck.

x

GAtherton profile image
GAthertonAdministrator in reply to ettezus

The trouble with going to a company that sells medical testing is that

1. They exist to offer tests that NHS doctors do not do, usually for good reasons

2. Ultimately they exist to make a profit.

Offering testing for chronic diseases that mainstream medics have trouble treating is one obvious way to make a lot of money.

I would argue that it is better to follow the logical thought processes of a single person who only has your health interests at heart i.e. your GP. Find one who will work with you and listen to their advice. Your GP can order fungal specific testing you mention but he/she must be sure that there is good reason to do so.

The result you have paid for might show that you are living in a damp home - but you already knew that. If you spend a large amount of money on being tested for mycotoxin in your blood or urine that same principle applies - we all probably eat more than we breathe in but we are all exposed. The results are not particularly helpful. Save your money and move out of the damp home, look into how you keep your next home dry nacpatients.org.uk/damp_gen... and most occupants will slowly recover as the levels of allergens and toxins fall away.

Remediation is possible in your damp home but it will probably be very expensive and you must move out while work proceeds. Staying in a damp home while being medicated isn't a good option.

If anyone does not improve over a few months then start looking for infections that can be treated with your doctor or respiratory illnesses like asthma. This might need a consult with a respiratory specialist to achieve best results. Yes it might mean taking conventional drugs which have side effects but in the long run even if you try taking alternative therapies the likelihood is you will end up taking those anyway.

GAtherton profile image
GAthertonAdministrator

What you describe is a home with damp and that is known to carry several risks to respiratory health along with things like sore eyes caused by the allergenic dust. Health impact from indoor air pollution has been the subject of a recent report from the Royal College of Physicians rcplondon.ac.uk/projects/ou...

We know that some respiratory, sinus and eye irritation (and atopic eczema) is caused or strongly associated by damp homes , or damp homes that have since dried out but were not adequately cleaned. Infection is much less common. Your doctor should support you in trying to improve that situation but sadly landlords & councils can be unhelpful so we are left with advising many to move home though we do work with the Institute for Specialist Surveyors and Engineers (isse.org.uk) who do help with advising and persuading owners on remediation and prevention. All too often this goes to court before action is taken.

Your landlord has a duty of care, you can challenge on that basis if you have a medical history including illnesses that fall into the categories listed above. Citizens Advice Bureau can help with this citizensadvice.org.uk/housi...

Once moved out of the damp home we know that most symptoms gradually decline. If after 6 months there are still health issues return to your doctor.

Diagnosis from photos is not a good idea as it is very inaccurate. Moulds that infect the skin are common but they tend not to produce skin pigmentation so don't conclude that your skin is growing a culture of a mould similar to those you might see via a Google search. If you are still anxious your doctor can send a scraping of the skin to check for fungal growth.

I hope that help - unfortunately damp homes are at the centre of much dispute amongst landlords, tenants and the people who can remediate & ventilate homes properly. I suspect a lot of the problem is caused by homes built decades ago that have now been altered to accommodate modern living with little regard for adequate ventilation.

nacpatients.org.uk/damp_gen...

I'm coughing up mucus plugs it's in my stools and my eyes as well as my skin. There was only one mould patch in my home that I got rid of a long time ago. My building is water damaged we used to have a flat roof and then the guttering from the pitched roof once they did it just leaked water down the walls for years. This didn't start with the legions first I became very ill with stomach problems then my joints started to swell my eyes became repeatedly infected I'm in n out of Moorfields eye hospital and now have scaring under muy eyelids. I have a constant cough that is now producing plugs that has the same thing in it that it's in my eyes in my nose my mouth stools and lungs. I don't just have legions I look like I have scratches at times or it looks like I've been burnt. If I cover myself in a thick cream or petroleum jelly little white hairs protrude from my skin. There isn't a patch of me that doesn't have this from scalp (hair is badly affected and grows in an odd way now as do my eyes lashes and eyebrows) my vagina down to the soles of my feet. I have constant infections of kidneys I've had pleurisy most recently I nearly died from cellulitis that started at a legion site. My forehead is spongy need I go on. Please don't think I just fui a Google search and think a ha that's what I have. Believe me I don't. Myself and my two daughters are affected. My youngest suddenly developed asthma she is iron deficient and whenever she stands up falls to the ground she is 15. I also have many deficiencies we all suffer sleep problems and developed allergies. I'm certain that what I have is more than an allergy to moul. It might have started out as that bit now I'm at a point where at times I can not go on. I'm I'm constant pain constantly coughing with chest pain and numb fingers that is apparently carpal tunnel but it feels like my blood flow is restricted my hand swells and my daughter has to vigorously rub my arm until I feel the blood flow back into my hand. I have had a lot of hospital stays and once I noticed something strange around my catheter site that at the time I didn't really take much notice of. Oh and my children were premature I've had six miscarriages one ectopic and I'm now infertile. I'm Constantly in n out of hospital for one thing or another but never any reason as to why when what they Thouht was wrong suddenly isn't that. I'm only 38 this is not right.

It sounds like you have mycotoxicosis ie the toxins from hidden mould has affected you badly.

There are 4 mechanisms by which fungal toxins cause health issues.

One is the direct toxic effects of fungi ,moulds and yeasts,and the other three are exaggerated immune system reactions to fungal antigens.

1 - the direct toxic effects -neurotoxic/nephrotoxic/hepatoxic/carginogenic

2 - Eosinophilic Fungal Rhinosinusitis

3 - Mixed mould Mycotoxicosis

4- Fungal Exposure Endocrinopathy

Everyone in a mycotoxin contaminated environment will have fatigue and other systemic symptoms but they are usually written off by UK medical profession to other causes.

Even individuals with no exaggerated immune response to fungal antigens are slowly being poisoned every minute spent in a mould contaminated environment.

I have been in two UK hospitals with areas affected by black mould that have exacerbated my symptoms so it is not only houses affected: also workplaces,schools etc can be affected.

Tbe worst may have little visual mould but it is hidden in inaccessible areas such as cavities or behind plasterboard walls but the toxins act like a gas and permeate into the living spaces.

GAtherton profile image
GAthertonAdministrator in reply to Lutonian

There are numerous impacts on our health of living in damp homes but the involvement of mycotoxin is as yet very uncertain. You will struggle to get a UK doctor to be able to diagnose or treat illnesses that are speculated to be caused by mycotoxin as they are guided by what we know and are professionally bound not to treat unless they are sure that they are acting in the best interests of their patient.

Damp homes are the cause of the problem. The cure is to remove yourself from exposure to that problem and symptoms will usually recede over the next few months.

Lutonian profile image
Lutonian in reply to GAtherton

Yes living in a 'Water Damaged Building' can cause multiple health problems and affects different individuals in different ways with factors such as sex,underlying health,exposure levels,immune status,health history etc all can play a part.

What is known is that ,water damaged buildings' (WDB)are damaged/contaminated by a complex range of micro-organisms inc moulds,yeasts,bacteria to varying degrees dependant on factors such as building materials used,degree and duration of water ingress, ongoing humidity where growth is occuring ,materials/substrate organisms are growing on.Google 'Water Damaged Buildings and effect on Human Health'

What is known and accepted science is that specific moulds species produce identified metabolites inc mycotoxins under specific conditions: when under stress eg drying out or trying to kill using bleach etc, moulds produce increased mycotoxins: see 'WHO bulletin - Toxic Effects of Mycotoxins on Humans ' .The authors state "Mycotoxicosis often remains unrecognised by medical professionals except where large numbers are involved"

The fungal spores and mycelial fragments themselves from dead mould also present health hazards as do substances such as endotoxins from gram -ve bacteria such as pseudomonas .

A WDB is usually a complex 'toxic soup ' of varying degrees and it is difficult if not impossible to quantify the individual health effect of the individual microrganisms present.

However if specific mould species are identified then what metabolites inc mycotoxins they are known to produce is going to be a health risk

Speaking from personal experience i have increasingly suffered from a number of chronic inflammatory responses and muitiple chemical sensitivities from long term exposure to 'water damaged buildings' such that now even low levels of mould cause inflammation in my brain,lungs,kidneys,eyes,liver ,GI tract to name a few and the sensitivity keeps on increasing such that environments i was OK in , i no longer am.

Ive recently received the results of tests that show i have a number of mycotoxins in my blood including ochratoxin and aflatoxin B and my immune system has become highly sensitised to them and the tests show two molecules are acting as epigenetic DNA adducts .One is blocking production of ensyme metallothionein and the other is triggering overproduction of ensyme LDH-B which testing lab advises is also known as Renal Carcinoma Antigen : the testing lab did not know that i had a papilliary renal cell carcinoma removed in Sept16

My technical background is in Microbiology but even with this it took me many years to put together the seemingly random pieces of my health puzzle when my wife was ,apparently ,unaffected .However with benefit of hindsight ,it did explain the chronic and sometimes acute health problems my dog suffered in same environments.

Two potential risk factor for myself re hypersensitivity was that i) I had an auto immune illness ca 45 years ago and ii) I had a pseudomonas Urinary Tract infection in 2011 (see pseudomonas and endotoxins )

I also registered high IgG to saccharomyces cereviceae ca 1 year ago which has been used as test to differentiate hypersensitivity pneumonitis and Crohnes disease from other illnesses.

sporty333 profile image
sporty333 in reply to Lutonian

Hi there, can you tell me where you had the testing done please?

Canacainoo profile image
Canacainoo in reply to sporty333

Hi I have read on a website that these toxins from mould can be treated with various supplements also with activated charcoal and also ozone treatment. The latter two need to be under medical advice and or supervision. I hope this will help someone.

I am also trying to find the remedy for mould poisoning. I feel so much better when I go out of my house for the day. I have tonight just moved from my bedroom which has black mould, that I previously treated with bleach and painted over. It came back and tonight I realised that each time I went to bed in that room I started with mucus going down the back of my throat that made me cough and kept me awake. It was the same tonight so I moved into my back bedroom and the mucus and cough stopped straight away. The penny dropped that it was all due to the mould.

So I've just looked up the symptoms and I have all of them. Then I found this website. It's pretty poor when Doctors in the UK purport not to know or understand anything regarding mould poisoning. I suspect it's more to do with what treatment and or testing costs

rather than ignorance. It's well documented I suspect in the USA so why not here?

Advice on treating this at home can be found on the internet it's just a matter of searching. I hope people are able to find d a remedy and return to normal living again.

Having read your post again, what was the unusual thing you saw with your catheter? Could you describe it?

It sounds like you and your daughters immune systems have been seriously affected by mycotoxin exposure over a long period . If your immune system has been compromised, it may be that this has allowed some mould spores to germinate in you causing a chronic invasive fungal infection which is now affecting a number of areas jn your body possibly spread via your blood stream from initial site of infection. Its truely a vicious cycle once a chronic fungal infection gets established and you are still exposed to mycotoxins from water damaged building.

Is it possible you could move to stay with friends or relatives or move house altogether? If you move to mould free environment you will feel an improvement after a period of time(depends on historical levels of toxin exposure and ic you have a chronic fungal infection or not) and give you a chance/time to address any chronic fungal infection .But dont take any fabric type possessions with you eg clothes ,bedding, mattreses as they will be contaminated with mould and mycotoxins wheras it is usually possible to clean hard surfaces like tables.Hard i know but essential in your condition.

Thanks

GAtherton profile image
GAthertonAdministrator in reply to Lutonian

There is little evidence that this can happen as yet. There is good evidence that living in a damp home is bad for respiratory health but what is causing that is still very up for debate. While doctors & scientists debate I agree with you - forget spending money on medical tests and move to a dry home. Best not to take porous articles such as soft sofa's and beds with you but clothes and other items that can be cleaned in a washing machine or wiped clean should be fine once cleaned.

nacpatients.org.uk/damp_gen...

GAtherton profile image
GAthertonAdministrator in reply to spacegirl1978

Spacegirl. The coughing up of mucus plugs is common with a type of allergic aspergillosis known as Allergic Bronchopulmonary Aspergillosis (ABPA). This means that you have a fungal lung infection and need to be treated at a specialist respiratory hospital. Most such people have a very high IgE count as their immune system is reacting strongly to the fungus and this can be checked by your GP nacpatients.org.uk/abpa.

If you are also living in a damp home it will make matters worse and you describe eye sensitivity which is consistent with that.

Ask for a referral to the Brompton Hospital in London or the National Aspergillosis Centre in Manchester where specialist can confirm or eliminate this possibility.

Lutonian profile image
Lutonian in reply to GAtherton

The RCP '6 Steps to Breathing Better Air for General Public'

"Ensure you have an energy efficient home" is one of the major factors in the increase of mould and mould related illnesses since 1970s.

Sealing up houses with double glazing ,filling cavities with blown in insulation(plus organic matter) , no ventilation created ideal environment for mould growth.

Now building regs say have to fill space between ground floor ceilings and first floor flooring with insulation. The space cannot breathe and any leaks hold moisture in insulation and facilitate mould growth in this space and back of 'dot and dab' plasterboard walls (another cost cutting building reg approved without engaging brain: the air spaces behind board are ideal breeding ground for mould if property not dried out quickly after plastering and any leaks: Ive seen it and experienced it in 2014 with brand new house!)

GAtherton profile image
GAthertonAdministrator in reply to Lutonian

I agree wholeheartedly.

Spacegirl1978

Please look up the 'Hindawi' Review article' " A review of the Mechanism of Injury and Treatment Approaches for Illness Resulting from Exposure to Water-Damaged Buildings,Mold,and Mycotoxins".

dx.doi.org/10.1155/2013/767482

It is the most concise and informative article on subject i have found .

Please print off and give to your GP and any other people you feel should understand what you and family are going through.

Anyone with an open mind and medical or scientific training should be enlightened and then be in a position to help you.

Hope it goes well and you get help soon

Doug

Hi sorry I have not replied to anyone. If im honest I am truly struggling to cope right now. On top of my endless symptoms and chronic fatigue looking like a freak now my hair is falling out leaving me even more embarrassed to leave the house. I appreciate all of you for the advice and will be trying to go down every avenue as and when my brain and body work.

Yes my flat is most definitely water damaged and built from hazardous banned building material ie asbestos but please believe me when I tell you my home is falling apart due to mold spores (pretty sure its black mold) I'm not saying I'm an expert and I did not come to thinking this by doing Google searches and blindly agreeing with whoever. I have lived in this Hell hole from the age of seventeen till now. i will be 39 in April. From the minute I moved in my health, fertility and life have gone into teapots decline. For many years I thought I was going crazy not because I was ill (I didn't know my illnesses were anything outher than random illness) but because of a strange type of fluff type stuff that I could see everywhere and would block everything it got into. No amount of cleaning and vacuuming would get rid of it. I now very much believe are black mold spores that come from the ceiling and scerting boards it is in and on everything and anything including myself. I even purchased an expensive Dyson with Hepa filter and this is extremely difficult to keep it unblocked from what just looks like fluff or dust. Along with my already mentioned symptoms if you see my skin it's not just legions I have my forehead for example if touched is spongy if I apply Vaseline or a thick lotion and push in one direction.......spores appear. Mr skin is yellow/green and it has taken two years to get any cream lotion into my skin/legions. I'm now into year six of full on illness. My eldest daughter was diagnosed with borderline personality disorder not long ago and she was starting to show the early symptoms I had. Thankfully she has now moved out and is thriving. Her mood energy and drive have returned as I knew it would once it of here. Now I'm just waiting for my youngest to go uni and away from here and me. It breaks her heart watching me just exits in constant pain no longer the mum I was. I can't bear it any longer I'm constantly telling her fyi stay out of here whenever she can. I have called the council again to try and get thro to them now I have knowledge and articles but they are dragging there feet as I'm pretty sure they know exactly what is going on with this building. Hopefully I will be back with some sort of progress to report.

Good luck to all and thank you.

Stacey. X

Lutonian profile image
Lutonian in reply to Banditboo2

Your daughters improving health once she left property is all the proof you need.

22 years is a long time to live in a water damaged building although it may have been deteriorating over time and it will take a long time for you to recover once you have moved to a clean environment but you MUST move asap.It is the most important action you can take - see Review Article dx.doi.org/10.1155/2013/767482

DEMAND that you are moved out of flat .The bottom line is that everyone inc pets that live in a water damaged environment are being slowly poisoned every time they breath.

It affects different people in different ways dependant on things like genetics,sex,underlying health,amount of exposure,age etc .but even if an individual is currently showing no symptoms doesnt mean that damage isnt slowly being done at a cellular level and at some stage they will start to feel symptoms .

Print off dx.doi.org/10.1155/2013/767482 and send it to council and environmental health officer with a history of your health.If you can afford a solicitor to do it even better.

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