Non respiratory symptoms

[sarab09]

Manchester confirms aspergillus plus other molds making me ill. Meds for lungs I understand. But I have many non respiratory symptoms including eyesight deteriorating; brain fog and loss concentration; bloating and weight gain. They seem to expect me to have lost kilos but I seem to gain kilos and bloating every day. Does anyone else have these symptoms eyes; brain fog; weight gain? Thanks

[Lutonian]

Sarab09

The symptoms you describe are not unusual for someone who has lived in a water/mould damaged environment and suffered chronic exposure ; I've suffered same and more from living in mould damaged environments inc hospital ward!

If it can't process them out, the body stores toxins including mycotoxins in body fat as a defence mechanism and such increased fat deposits seem more difficult to remove through diet and exercise .

Rather than myself try to answer all your individual points I would recommend you read the 'Hindawi Review' Article , " A Review of the Mechanisms of Injury and Treatment Approaches for Illness Resulting from Exposure to Water Damaged Buildings,Mold and Mycotoxins ".

Hope it goes well.for you

[GAtherton Administrator Fungal Infection Trust in reply to Lutonian]

sarab09 my thoughts are that you are most likely describing an aspergillosis rather than symptoms resulting from an environmental exposure as Manchester is the UK centre for diagnosis and treatment of aspergillosis? If this is the case then please disregard Lutonian's comment as it does not apply.

[sarab09 in reply to Lutonian]

THANK YOU AND PLEASE FORGIVE UPPER CASE BUT MY EYESIGHT IS INCREASINGLY WORSE OVER THE PAST 2 MONTHS WHICH SEVERAL CONSULTANTS SEEM TO BE CAPABLE OF IGNORING. I DID READ THIS ARTICLE AND AT ANOTHER TIME I SHALL REFER YOU TO ANOTHER ARTICLES THAT MORE FULLY APPRECIATES MULTI SYSTEM PROBLEMS AND CLUSTERS OF SYMPTOMS BEYOND JUST RESPIRATORY BUT MY EYES ARE TOO MUCH PROBLEM TONITE.

[sarab09 in reply to Lutonian]

I still cannot find this article---I can find the journal but not the article. Do you have author's name or url? Thanks

[Lutonian in reply to sarab09]

Sarah09, apologies for delay in replying

Hindawi Review Article(Scientific World Journal) by Janette Hope entitled "A review of the Mechanisms of Injury and Treatment Approaches for Illnesses Resulting from Exposure to Water Damaged Buildings,Mold and Mycotoxins "

[GAtherton Administrator Fungal Infection Trust]

The symptoms you describe are common for someone taking steroid drugs & antifungals during treatment for aspergillosis. They are side effects of the drugs and we may be able to minimise them by adjusting your dose if you are only just beginning to take them - contact your doctor for further advice.

[sarab09 in reply to GAtherton]

WELL, THAT IS NOT GOOD NEWS BECAUSE I HAVE NOT EVEN STARTED TAKING STEROID DRUGS OR ANTIFUNGALS FOR MY ASPERGILLOSIS. SO I AM FEARFUL HOW MUCH WORSE TREATMENT WITH THESE PHARMA DRUGS MAY MAKE ME. THANK YOU.

[GAtherton Administrator Fungal Infection Trust in reply to sarab09]

Just to clarify: I assumed from what you wrote that you have most likely been seen at the National Aspergillosis Centre in Manchester and been diagnosed with aspergillosis. Is that correct? You indicated that you have been prescribed medications for your respiratory issues and I assumed you were taking them.

There are several possibilities for deteriorating eyesight. I suggest that you go to your GP specifically about your eye problems and get a referral for that issue so it may be looked at in detail.

[sarab09 in reply to GAtherton]

ONLY IF MANCHESTER CONTINUES TO IGNORE THESE SYMPTOMS THAT STARTED THE SAME TIME AS THE MOLD AND THE FLOODS IN MY FLAT!!

I AM TRULY DISAPPOINTED THAT EVEN IN MANCHESTER NO ONE REALLY IS LOOKING AT OR TREATING ALL MY SYMPTOMS!!

AND I KNOW OR AT LEAST I THINK I UNDERSTAND THIS STATEMENT BY ME POSSIBLY PUTS YOU IN AWKWARD POSITION BECAUSE OF YOUR PRIMARY ROLE AT ASPERGILLOSIS CENTER.

MY GP IS FURTHER BEHIND IN HER READING AND IN HER AVAILABLE APPOINTMENTS THAN GOD OR MRS MAY OR THE QUEEN!! AND LESS RESPONSIVE!

[Lutonian]

'Sarab09'

Which hospital in Manchester expected you to have lost kilos rather than put on weight?

Did the hospital explain to you why they expected you to have lost kilos rather than put on weight?

You say that "Manchester confirms aspergillus plus other moulds making me ill"; what are the "other moulds"?

Where do you believe is the source of the mould making you ill?

Also what was the hospitals view on your non respiratory symptoms?

Thanks

[sarab09 in reply to Lutonian]

I HAVE HAD MY FLAT TESTED FOR MOULDS BY WELL RESPECTED CERTIFIED PROFESSIONALS AFTER 4 YEARS OF BEGGING AND SCREAMING AT MY LANDLORD WHO HAS ALLOWED ME TO LIVE UNDER ASBESTOS ROOF TILES CRACKING AND FALLING; RAISING DAMP; REPEATED FLOODS FROM CEILINGS, WALLS AND WINDOWS AS I WATCH MOLD GROW AND DISAPPEAR AND GROW AGAIN AND SMELL MOLD CONSTANTLY SO NO DOUBT THAT SOURCE OF MY ILLNESS IS MY WATER DAMAGED RESIDENCE OR SICK BUILDING OR WHATEVER YOU WANT TO LABEL IT. I AM RETIRED SO NO OFFICE NOR SCHOOL UPON WHICH TO BLAME THIS.

NON-RESPIRATORY SYMPTOMS UNKNOWN "aetiology"--CHECK GOOGLE. CHEERS!

[GAtherton Administrator Fungal Infection Trust in reply to sarab09]

This is relevant information you did not mention earlier. Living in a damp home can be a serious health hazard and the longer you live there if you are becoming ill the worse your symptoms will get. You cannot be medicated to enable you to carry on living in a damp home, the only treatment is to move out of the damp home as soon as possible.

[sarab09 in reply to GAtherton]

I DID IN MY ORIGINAL POSTINGS. I AM MOVING THE FLAT NEXT WEEK BUT LONG AGO EVERY BIT OF MOLDY FURNITURE, TOWELS, BOOKS ETC HAVE BEEN THROWN OUT. SOME OF US CANNOT AFFORD TO JUST MOVE OUT OF WHERE WE LIVE--DEPOSITS, CREDIT RATINGS FOR RETIREES, ZERO VACANCY IN SOME PARTS OF UK, ETC.

NOT MEDICATED BUT AT LEAST LISTENED TO AND RESPECTED WHEN MY COMPLAINTS AND ONGOING SYMPTOMS DO NOT FIT THE CONFINES OF THE ASPERGILLOSIS BRIEF---BIGGEST PROBLEM IN UK IS GPS AND CONSSULTANTS JUST DO NOT LISTEN TO THE PATIENTS AND TREAT US RATHER RUDELY!

[ettezus]

Yes I too have similar symptoms, and I am still stuck in my mouldy damp flat. There is a problem that the conventional medicine fraternity only appear to be interested if it affects the lungs, note interest if it affects your lungs, which is not my problem thus far, I know I am suffering from inflammation in my body. There is a vast amount of research papers out there confirming mould and its affects on the body apart from the lungs, The article mentioned by Lutonian is very interesting and applicable.

You may want to look at the article by Alex. Manos, a Certified IFM (Institute of Functional Medicine) practitioner. nutriadvanced.co.uk/news/th...

I found it to be interesting. Nutrition, proper supplementation and chelation to get the toxins out of the body is the way to go. If only Conventional Medicine would bring this on board within its protocol instead of just administering drugs, which itself Is added toxin, I am sure us mould sufferers would be taken seriously.

Alas because I am stuck in this flat at present I cannot start my healing properly. I am trying to maintain my health as best as I can in the meantime.

Regards

[GAtherton Administrator Fungal Infection Trust in reply to ettezus]

There are few proven impacts on your health other than respiratory health problems and that is why conventional doctors will tend to treat that first. Other major problems include chronic allergy and some suggest increasing sensitivities to odours and other allergens. The only current treatment for health problems caused by exposure to environmental irritants is to avoid exposure - sadly that means moving out of the damp home or remediating it to the point that you can safely return. The first option is by far the quickest in most cases so is the one I would suggest.

[sarab09 in reply to GAtherton]

With all due respect I TOTALLY DISAGREE WITH YOUR STATEMENT about there being "few proven impacts on health other than respiratory". The real problem in UK is that you only want to look at your own research and your own special projects and want to give no credit to research and specialities and studies in other countries including USA, Canada, Japan, Australia. The Empire continues to ignore research in its former colonies! Do you really want me to list the scientific research and the procedures being followed at UC Berkeley, Stanford, Mayo Clinic, Pasteur Institute and countless other research hospitals?? Do you want to continue to ignore all CDC information and data? Only then can you make such a statement!!

There is significant research on inflammation causing weight gain and water retention, GI tract problems, eyesight deficits, cognitive problems. Why do you and the learned doctors at the Aspergillosis Centre want to ignore all these other "discoveries" and problems---molds and mycotoxins affect much much more than just lungs.

[ettezus]

I do not have weight issues, but I have the others you mention and also high blood pressure, joint pains particularly in my hands when I wake up, have loose stools which have not stopped since the mould spread last year, tiredness has improved since I properly addressed my nutrition. It goes on and the conventional hospital doctor says it is all in my head as there is no link that mould causes illness relating to my symptoms. I am on my own in dealing with this unless I pay to see an environmental doctor, which I could not get funding for from the NHS, and I cannot afford.

Regards

[sarab09 in reply to ettezus]

SORRY BUT THE NHS AND ITS BIG PHARMA MENTALITY AND CHRONIC BACKLOG OF RDVS PLUS INFLEXIBILITY WILL KILL YOU!

I HAVE LIVED UNDER ASBESTOS SHEDDING ROOF AND IN A SEVERELY AND REPEATEDLY WATER DAMAGED BUILDING FOR 6 YEARS. I PAID FOR TESTING OF MY FLAT AND FOUND ASPERGILLUS, TOXIC BLACK MOLD, FUSARIUS, PENICILLIUM BREVICOTUM.

I GIVE UP ON NHS AND BIG PHARMA PUSHING DOCTORS WHO DO NOT TREAT THE ENTIRE INDIVIDUAL AND WILL NOT EVEN DISCUSS THE INTERLOCKING OF SYMPTOMS!

DEFINITELY MUST BE MORE GRANT AND BIG PHARMA MONEY IN THE RESEARCH FIELD OF RESPIRATORY MEDICINE BECAUSE EVEN AS WONDERFUL A CENTRE AS MANCHESTER UNIVERSITY DOES NOT WANT TO LISTEN TO CONCEPT OF INTER-RELATED SYSTEM WIDE SYMPTOMS!!

I REACHED A NEW LEVEL OF DISGUST TODAY AFTER A PAINFUL CYSTOCOPY EXAM WHICH I HAVE BEEN BEGGING NHS FOR AND MANCHESTER FOR OVER 6 MONTHS. GUESS WHAT? UROLOGIST PRIVATE CONSULTANT SAYS HE SUSPECTS CANCER AND WANTS ME TO HAVE A BIOPSY URGENTLY---AND HIS IDEA OF URGENT IS ABOUT 4 WEEKS!! DOES ANYONE BESIDES US LONG SUFFEREING PATIENTS REALIZE HOW LONG 4 WEEKS IS?? AND HOW MUCH MORE DAMAGE CANCER CAN DO IN 4 WEEKS???

CALL ME TOTALLY DISGUSTED.

[GAtherton Administrator Fungal Infection Trust in reply to sarab09]

I sympathise - the NHS is set up to work on separate parts of our bodies as a general rule so if you have multiple problems affecting different parts it can take some time to get around all of them. There are improvements in promoting a 'whole body' approach but it seems very patchy so far.

Likewise waiting times for cancer diagnostics - 4 weeks feels like an eternity under those conditions and some places are quicker. The wait does not usually affect the final 'cure rate' but the anxiety caused is considerable - there needs to be something that addresses that and you can go to your GP for help with anxiety.

I agree - there are many needs to improve that the UK government needs to address.

[sarab09 in reply to GAtherton]

SORRY, I AM REALLY ANGRY AND I HAVE ALREADY SURVIVED CANCER ONCE BUT URGENT IS NO WAY 4 WEEKS.

I DETEST MY GP SO MUCH AFTER BATTLING FOR 5 YEARS FOR A REFERRAL UP TO PROF DENNING THAT THERE IS NO WAY I AM GOING TO HAVE A DISCUSSION WITH HER.

WITH ALL DO RESPECTS, I AM NOT UP FOR PLATITUDES FROM YOU EITHER BECAUSE THE NHS IS JUST NOT FIT FOR PURPOSE ANY LONGER NO MATTER HOW MUCH YOU WANT TO APOLOGIZE FOR IT.

FYI: 5 LONG DISTANCE PHONE CALLS AND STAYING WITHIN MY TRAVEL PLANS/DISTANCE/BUDGET AND WITH SENSE OF URGENCY, I NOW HAVE PUBLIC HOSPITAL BIOPSY SCHEDULED IN MY HOME, REPEAT HOME, COUNTRY! DISGRACEFUL AFTER 35 YEARS OF PAYING MY TAXES AND FOR NHS THROUGH MY PAYROLL ETC THAT I AM FORCED TO FLEE TO GET ANY MEDICAL CARE!!

[lafsalot]

yes you guys. I am in california and had my place tested as well. ALL of your symptoms are directly related to the mold spores you have been inhaling and ingesting. Who ever tries to tell you they are not....needs to go do research!!

[sarab09 in reply to lafsalot]

YOU ARE LUCKY IN A COUNTRY WITH COMPETITIVE MEDICINE AND INNOVATION INSTEAD OF IN A COUNTRY WITH UNDERFUNDED AND LOWEST COMMON DENOMINATOR NHS MEDICINE (UK).

COMPETITION DOES MAKE DOCTORS AND RESEARCHERS WORK HARDER AND BE MORE FLEXIBLE. HERE IN UK NHS DOES NOT KNOW MEANING OF 'CONTINUING EDUCATION' AND THE GPS IGNORE THE NHS OWN GUIDELINES AND ONLINE REFERRALS!!

HERE WE HAVE LAZY DOCTORS ON SALARIES AND A POSTAL CODE (YOUR ZIP CODE) LOTTERY WHICH DECIDES ON HOW WELL YOU ARE TREATED AND HOW QUICKLY. SO POOR DIE, MIDDLE CLASS SUFFERS, AND RICH GO PRIVATE!!

I AM SURE MY SYMPTOMS ARE INTER RELATED TO THE MOLD AND ASBESTOS IN MY WATER DAMAGED FLAT--BUT MY GP REFUSED TO DISCUSS MY 'HOME ENVIRONMENT' FOR 5 YEARS OR EVEN REFER ME TO THE NATIONAL ASPERGILLOSIS CENTRE IN MANCHESTER UK!!

PLEASE SEE MY COMMENTS IN EACH OF ABOVE.

[lafsalot in reply to sarab09]

WELL NO I AM NO WHERE NEAR LUCKY, LET ME TELL YOU!!IN THE UNITED STATES WESTERN MEDICINE DOCTORS ARE NOT REQUIRED TO LEARN ABOUT MOLD, MYCOTOXINS, MOLD FUNGUS IN THE HUMAN BODY OR ABOUT ANYTHING THAT HAS TO DO WITH WHAT TOXIC MOLD CAUSES TO THE HUMAN BODY! SO THEREFORE THE MAJORITY OF THE TIME WE ARE MISDIAGNOSED. I HAVE BEEN FIGHTING FOR MY 12 YEAR OLD DAUGHTER TO SEE A SPECIALIST FOR 1 FULL YEAR AS OF LAST MONTH. SHE HAS HAD AN ENLARGED LIVER FOR A YEAR NOW. THE MOLDS FOUND IN OUR APARTMENT WERE ASPERGILLUS/PENECILLIUM, CLADOSPORIUM SP, ULOCLADIUM AND STACHYBOTRYS CHARTARIUM SP.THE LAST ONE IS A CARCINOGENIC IN HUMANS. IT CAUSES LIVER AND KIDNEY CANCER. SHE WAS HAVING BLOODY NOSES AT THAT APARTMENT , NOW SHE HAS THEM UP TO 3X'S A DAY. OH BOY SHE STARTED HAVING MILD TREMMORS SHE WENT AND SAW A NEUROLOGIST. HE SAID THEY WERE CAUSED FROM THE STRESS OF EVERYTHING THAT IS GOING ON. THAT THE STRESS WAS CAUSING HER ANXIETY WITCH THEN WOULD CAUSE THE TREMMORS. HE RECOMMENDED COUNSELING. THIS WAS 3 MONTHS AGO, NOW HER TREMORS ARE LASTING LONGER AND HAPPENING MORE OFTEN.......ALL OF THOSE HEALTH ISSUES I JUST MENTIONED ARE A DIRECT RESULT IN INHALING AND INGESTING THOSE NASTY MOLD SPORES THAT ARE INVISIBLE TO THE NAKED EYE...SO IM STILL WAITING TO SEE IF THIS INFECTIOUS DISEASE DOCTOR WILL BE WILLING TO SEE HER. I JUST DONT SEE WHERE IT IS THAT I AM ANYWHERE NEAR LUCKY.................................

[kenneth1234 in reply to lafsalot]

Are you still living in the apartment?

[lafsalot in reply to kenneth1234]

No way...... after the testing was complete, i did some researching and when learned what i learned we vacated immediately and left EVERYTHING we owned behind so that we did not cross contaminate where we went.

[GAtherton Administrator Fungal Infection Trust in reply to lafsalot]

Has your health and the health of your family improved since leaving the mouldy home?

[lafsalot in reply to GAtherton]

it has with some symptoms but other symptoms have progressed. We still have not detoxed the mycotoxins from the mold spores out of us. Im trying to get us in to an Infectious disease doctor at the moment. Our chronic cough, burning eyes, gas, upset stomach have all subsided. However my daughter began having nose bleeds and tremors right before we left the moldy hime. She's been to an allergist and a neurologist that don't have a clue. Now her nose bleeds are chronic happening up to 3 x's a day and when its not bleeding she passes these weird really dark red "THINGS" that are not normal, her liver is still enlarged and now her tremors are happening more often and lasting longer. For me my abdomen is very very swollen and if it gets pushed on it hurts. I have brain fog and a few other things going on. I am just grateful i finally figured to what was making us so sick for so long....

[ettezus in reply to lafsalot]

Hi. Look up Dr Darren Schmidt’s YouTube channel and website. He is a chiropractor now specialising in nutrition. He himself suffered mould damage to his health. If any health practitioner understands our plight he is one. He is based in the USA. I have learnt a lot from his channel and website, which conventional medicine if it could put aside its arrogance and ignorance would learn too.

Once again nutrition plays an important part in dealing with this. I hope this helps,

youtu.be/d8xOygMPU6g(Not working as expected?)

youtube.com/redirect?

thenutritionalhealingcenter...

[lafsalot in reply to ettezus]

thank you

[lafsalot in reply to kenneth1234]

I'm sorry i just saw this Kenneth1234. No when i figured out what was making us so sick we vacated immediately and left EVERYTHING we owned behind so we did not cross contaminate where we were going....

[sarab09 in reply to lafsalot]

Sorry to hear about your small daughter---as adults illness needs our coping but our children are just the fragile ones subjected to the whims of any system. When I used the word "lucky" I was VERY SPECIFIC in regards to the two different medical systems in USA and in UK and I have lived under both systems. In UK the NHS system promotes lack of innovation and mediocrity and long long wait lists for referrals. To go private in UK costs you at least GBP200 for a generalist/primary care doctor. For a specialist like infectious disease doctor it would be over GPB 300 and starting tests all over again. At least in USA there is competition---everyone wants to make the most money from research or practice or combination---therefore, the quality of medical care is generally MUCH HIGHER than in UK where we suffer from postal code lottery on health care quality, waitlists, etc.

[GAtherton Administrator Fungal Infection Trust in reply to sarab09]

I don't think GP's have the resources or training to recognise or treat many of the environmental exposures in the home. We are working to try to improve this with ISSE (isse.org.uk) and more recently UKCMB (ukcmb.org/). I will try to keep people informed of progress but as yet it is slow, though we have at least managed to get the UK governments to recognise parts of the problem.

[sarab09 in reply to GAtherton]

ONE OF THE SENIOR PARTNERS IN MY GP PRACTICE HELD UP HIS HAND IN MY FACE AND TOLD ME THAT HE DID NOT WANT TO HEAR ABOUT MY FLAT AND FLOODS AND DAMP AND MOLD!!

SO EACH TIME YOU ADVISE ME TO GO TALK TO MY GP, MY BLOOD BOILS AND I SHAKE MY HEAD IN DISGUST.

SO SORRY BUT YOU ARE NOT EVEN MAKING A DENT AT GP LEVEL! GPS DO NOT EVEN LOOK AT HOW THEY SHOULD TREAT PATIENTS, ETC ON THE NHS WEBSITE OR THERE WOULD BE FEWER REASONS TO COMPLAIN!

[sarab09 in reply to GAtherton]

Here is an update for Feb 2018:

Mr Atherton, I have gone another round with my local GP that is so incompetent that they managed to "misplace" as in deny receiving the letter from Manchester Aspergillosis Centre for over a week for my new anti fungal meds, refused to fill the RX until I turned into a raving old woman and so did my pharmacist. Then GP fought with me about the contraindications with other meds which are clearly listed if you use Dr Google which clearly is better than my local GP!!

So for 5 years they insisted my symptoms had nothing to do with flooding, black mold on walls, repeated water penetration, etc etc and misdiagnosed me until I pulled the other raving old woman routine last year and self referred my self to Manchester by threatening to sue!! This SHOULD NOT HAPPEN!! THIS IS DERELICTION and breaks the covenant that doctors have that they "will do no harm"---bungling and delays do harm and allow the lungs to get worse and the weight gain, etc to infect me and my system deeper and deeper until I lose the will to fight and/or to live.

So please do NOT excuse total incompetence within NHS---it is now a national disgrace! And we all know that doctors play CYA more avidly than most professionals!

[Maryjune25]

I was diagnosed with aspergillosis and unexplained weight gain and in a brain fog, the doctors said that my weight gain is not related to my aspergillosis? But I believe it is in someway so is there anyone else out there experience weight gain?

[sarab09]

Yes, I have been battling with unexplainable weight gain while I am eating significantly less food since my exposure to toxic molds including aspergillus, black mold, and penicillium. Because most of the literature is controlled in Europe by those more interested in the RESPIRATORY aspects of aspergillosis, they fail to acknowledge the ample evidence for weight gain which is more properly inflammation caused by aspergillus fungi and black mold. They seem to be wary of admitting to brain fog or other neuron or neurotoxicity as well. They just want to write that next big research paper and get it published and prescribe more anti-fungal drugs that cause dreadful side effects (after all, neither the docs nor their loved ones are having OUR reactions) while they wait for more research grants, sabbaticals, and invites to speak at conferences. See my other postings for two resources on these specific ailments.