New to aspergillosis

[Mariongisela]

Hi, my husband, a forester of 40 years, has recently been diagnosed with suffering from Asperigillosis.... This was after many months of suffering with breathlessness and coughing . The only form of treatment specialist have prescribed is steroids . After research I have put him on various supplements basically to try and build up his immune systems - any cold going he gets. I understand this is a fairly new disease and it is frightening me let along my husband. Just wondering if there is anyone out their in the kent area who has this disease .

We have specialist again on Thursday and he is going to ask about anti fungal drugs .i understand that there is no cure for this but would like to know, basically how well it can be controlled .

[GAtherton Administrator Fungal Infection Trust]

Hello Mariongislea

From your description I am going to guess that your husbands diagnosis has allergic bronchopulmonary aspergillosis (ABPA) or one of the occupational hypersensitivities/allergies? Please confirm which.

nacpatients.org.uk/abpa

nacpatients.org.uk/allergies

I work at the National Aspergillosis Centre in Manchester and you can get a lot more information at nacpatients.org.uk with support groups on Facebook and Yahoo! full of hundreds of people living with aspergillosis. You will find their comments useful!

uk.groups.yahoo.com/group/A...

nacpatients.org.uk/facebook...

[Mariongisela in reply to GAtherton]

Thanks for your reply - was feeling as if we were banished to the wilderness with this. We are presuming that it is ABPA - the chest specialist at Maidstone hospital just said it was an allergy to the fungus and his liver and other results were all normal. We perhaps should have asked more questions but to be, honest were relieved at the time just to get a diagnosis to the ongoing problems that my husband was having.

We are back at the hospital Thursday and I will be asking more questions then.

I have a husband who up until this struck , was a very active woodman running his own business and use to jetting off to california - but he feels this may never happen again and is very negative.

Many thanks

Marion

[GAtherton Administrator Fungal Infection Trust in reply to Mariongisela]

Once the breathlessness is controlled your husband may well find he feels much more able to get out and about. It sounds like more has to be done to complete diagnose of ABPA as allergy to Aspergillus on its own is not enough!

Presumably your medical team have done other tests or plan to do more if they suspect ABPA.

I mentioned occupational hypersensitivity as someone who comes into contact with lots of wood dust (or other dusts) and of course mould spores (if they spend a lot of their time disturbing leaf moulds & earth) can develop hypersensitivity to those dusts.

patient.co.uk/doctor/Extrin...

From the little I know of your situation the jury may still be out as to which is causing the problem. In either case steroids should help and I am sure your doctors will be thinking about all these options.

We do not have a local support group in Kent unfortunately (though we would love to have one) as there are relatively few patients here who come from the South East. We are not entirely sure why that is but likely doctors in that part of the country do not want to refer to us in Manchester unless completely necessary due to the travel involved. For sure there are as many in your part of the country as anywhere else and we need to reach those people with our services - in particular patient support.

You can however request referral if you feel you want to, though it sounds like your local medical team are performing well!

[sgw12 in reply to Mariongisela]

Hey Marion,

Here is a site that may be helpful..I know Dr.Shoemaker and he is very knowledgable in mold allergies and alike...the site is Survivingmold.com

[RevRavenHawk in reply to sgw12]

Many thanks for sharing this site!

I am in early stages of what I'd like to believe is recovery...

Gathering info from my motel room

as I've left the contaminated home I lived in for ten years with no answers-only dr's.

Bright blessings~

XORaavenHawk

[aaggtt17]

Hi . I live in us. Very hard to find info on this diease. I was hospitalized last March of 2014

I was diagnosed first with histoplasmosis

Got rid of that with a fungal drug called itracenol. Then Back to the diease speacialist to find I have now got aspergillosis my Dr s treated me with a drug called vorconozole . Made me very very sick . I was only able to do the drug for a month Bc of rapid weight loss and just felt like I was fading away. I couldn't eat the only thing I could do was drink nutrition drinks and that was hard. My lung doc has me on Dialaresp 500 steroid - breathing treatments x day and 2 ml of oxygen at night . When first diagnosed I thought I was dying I had severe pain when breathing . I'm feeling better I just had another broncos cope .waiting for the results . I pray I have it cleared up. I'm only 53 this has so aged me and I get out of breath so easily. My medicine even with my health ins here in us is 100.00 a month for 3 that I get

So depressing. I live along the ohio river .the Dr's say it's airborne and I love to plant flowers and feed the birds in the winter . They think I may hv caught it that way . But I don't think they really know how I caught it but this has been a long haul .Best of luck to u both.

[RevRavenHawk in reply to aaggtt17]

Greetings~

I too live in US.

I am currently living in a hotel(which is difficult as I'm disabled on social security)

I began to improve on anti-fungals a Dr in my primaries' prescribed. I've been so ill and am now dealing with spots on lungs and lumps in breasts. I've yet to see the environmental Dr at Mass General but will shortly.

Wondering if anyone has suggested your home be inspected by a mold specialist? I had a scientist come to the house yesterday and it's loaded with several molds but predominately aspergillus.

Marion...wishing you all the best as being multiplied disabled I'm aware of the frustration and potential depression that comes along with being limited in activities that were once second nature.

Very grateful to have found this site as person above stated trying to find informed doctors here in USA is even difficult. My best friend is the one who suggested my health concerns for past ten years may have to do with mold and this started all in motion.

Blessings of peace and healing energies to ALL who pass here~

Rev. RavenHawk Ruane HPs

[sgw12 in reply to RevRavenHawk]

Hey Rev.Raven Hawk,

No problem! Glad I could help! The Surviving Mold.com site has alot of great info. I myself am doing alot of research on alternative methods to fight the Aspergillosis or ABPA I have. I have actually experienced excellent results in certain combinations of herbs, vitamins, minerals, phytonutrients, enzymes etc... Nutrition is key! I try to get the nutrients mentioned through whole foods first. Also buy organic non gmo as much as possible and fresh local. There are many reasons why like to avoid pesticides, fertilizers, preservatives and the list goes on. Some fruits and vegetables you can get away with buying non organic look for the "Dirty Dozen" list online. First you should EDUCATE yourself with exactly whatever you have or diagnosis is. Know what you are dealing with so you can deal with it!

I've been dealing with what I have and mold allergies in general for over 15years. I've learned alot. So be proactive and it sounds like you are. Anyway glad I could help to anyone who reads this.

Thanks!

Steve

[RevRavenHawk in reply to sgw12]

My pleasure to meet you Steve!

Yes~I am naturalist first and foremost~ I am treating my service pup~Beltaine~with raw garlic and oil of oregano and think I should add both to my regime...any experience? I know in the past I have had great success at using Oregano to cure ear infections of many Lakota Sioux children at Pine Ridge reservation in S.D.

Looking forward to seeing you about!

Healing energies being sent up and out for you~

XORavenHawk

[RevRavenHawk in reply to sgw12]

Greetings and good evening, Steve~

Just thought...aren't you in US? The US Senate is currently working g on a new law..."US Toxic Mold Safety and Protection Act" also known as "Mellina Bill"

My issue is 2 yrs ago I was diagnosed with bi-lateral scar tissue of lungs after a ct scan. This cat scan showed a spot on left lung and nearly a year ago I lost use of my right kidney. I refused surgery as I strongly felt I had much more going on...rashes and bruising - unexplained as well as issues with my eyes. I'm also using the anti-candida diet and will keep you apprised after I see environmental Dr at Mass General Hospital.

Wishing you're having a Majickal Saturday evening!

XORevRavenHawk

[Mariongisela]

Hi,

You do sound as if you really have suffered with this disease..... As you say it does seem hard to diagnose. My husband is awaiting an appointment for bronchoscope to take samples of the lung, and before they will put him on any drugs.

Thank Goodness for Nhs here in England, a lot of us forget how expensive medicine and drs time can be.

I wish you well... I am begining to come to terms that my husband and myself are at the beginning of a long journey with this and we will have to learn to adapt our lives to it.....I know he feels it very hard having been working actively in the woods all his life and just hoping on a plane to California when he wants a break and not being able to do these things at the moment.

Take care and thank you for your reply

[StewartArm]

Hi, I assuming kent in England? If so I live in kent and recently been diagnosed

[Mariongisela in reply to StewartArm]

Hi , yes we are kent in England. May I ask what hospital are you under ? My husband is being seen at Maidstone and every time we see a different specialist and every time go through repeating symptoms, history etc. In fact we feel it's 5 steps forward and 4 back... Husband due to have a bronchoscope in a fortnight to take biopsy of the lung.hes on no medication at the mo and the coughing has come back, the breathlessness, and the pain in his side.

Are you on antifugal drug?

Regard

Marion

[StewartArm]

Hi, I have been at Margate hospital and the Royal Brompton. I requested a referral to the national centre in Manchester and I would recommend you do the same. It is your right to choose any hospital you like. The law came in a few years ago. I felt left and abandoned until I got to Manchester, at the very least I got medication to take. This link should be helpful nhs.uk/choiceintheNHS/Yourc...

[Mariongisela in reply to StewartArm]

thank you - this is how I am feeling and will push for once he has had the bronchoscope - it certainly has been an eye opener to me on how many diseases of the lung there are and how complicated it is to get a diagnosis...

Keeping my husband positive is a big problem!

Take care

Marion

[megarose1]

Hi Mariongisela I live in Rochester Kent, UK I was diagnosed with abpa in 2000, the Autumn is my worst time I am under Medway care, I was under Southend and my care transferred here, I have pain building on my left lung and pain in my nose in my sinuses a warning sign I need antifungals I see my consultant in October but I should see my g p now , I think your husband is in good care, theres good advice on nutrition here Id like to try Oregano oil I have heard a lot about it re abpa , my flare ups are found in blood tests i believe before my consultants appointments this should be part of your husbands care everything will be ok Marion