New member diagnosed with CPA and Aspergilloma

[StewartArm]

Hi all, I am trying to find positive stories relating to my diagnosis. I have sarcoidosis which has left me with cavities. About 5 months ago I coughed up blood for the first time. First I was diagnosed with a fungal ball and told not to worry. I went for a 2nd and 3rd opinion. Last Friday I was told that not only do I have Aspergilloma I more than likely have CPA and the chances of survival are very slim. I have been given Voriconazola and told to take 200mg in the morning and in the evening. At 35 being told I might have a year or 2 is shocking. Going home with tablets and wait and see is driving me crazy. So I guess my question is l, is there anyone like me that is doing well? Has multiple cavities and CPA. Has anyone ever been cured? Is it even possible?

[naomi88]

Hi StuartArm,

I am sorry to hear that you got such a prognosis, it is a shock to the system.

I would not accepted it as a set thing and definitely not go down before a serious fight with the disease.

The question is how do I fight molds and fungus-es when my immune system isn't working very well. I believe that is why the the fungi found residence in you, the immune system must get a boost with a herb called astragalus, plus garlic and cayenne plenty of it. In the mean time I would battle the fungi with Pau D'arco herb together with probiotics(dairy free), red clover or herbal blood tonic made by an american company Nature's Sunshine (could be found in health food shops) that contains a combination of herbs, and grape seed extract(sold as citrus extract) the strongest antifungal that is used a few drops in the drinking water between meals.

As diet I would cut off all refine sugars (including hidden corn syrup in products) and yeast containing foods for a long time as well as dairy and meat, beans will do instead at least for a year. I would eat vegetables slightly cooked(steamed) and generally eat food that I freshly prepared from the raw materials as oppose to those commercially available (convenient foods). The need of organic minerals(from plants, not rock dusts) in the fight of fungus can not be emphasized enough. Love your dark leaf greens(eg. kale- organically grown) for the magnesium and other minerals, need them in large quantities so juicing them will concentrate. There is also a German product called Bassica which provides the minerals conveniently, but I will not rely on it solely, greens still need to be used even if they are in powder form from sprouted brocoly, backweat etc.

And there are the FIR sauna/ steam baths with Epsom salts rubs and drinking electrolytes and baths with sodium bicarbonate that will help, as well as inhaling vapors with tea-tree oil.

There are many more ideas, but this is what came first to mind, I am sure that a herbalist or naturopath will have many more guns in the fungal battle.

Hope to hear good news from you in a year time.

[GAtherton Administrator Fungal Infection Trust]

Here at the National Aspergillosis Centre (NAC) in Manchester (nationalaspergillosiscentre... we have many patients who have lived with CPA for years - I think the longest has been with us for 20 - 30 years. CPA is not curable but is manageable and a referral to NAC might well be a good suggestion for your doctors if CPA is confirmed. It might help your case with your GP if they know we are free of charge to GP service in the UK.

[StewartArm in reply to GAtherton]

Hi and thank you for the reply. I was at NAC last Friday and was told I probably have CPA. I 100% do have a fungal ball as I have seen it on the CT Scan I had at the Royal Brompton. You don't know how much you have lifted my spirits. I have searched everywhere for just one example of people at least surving past 10 years or so.

Spent everyday since last Friday thinking I might die at any moment. So thank you

[GAtherton Administrator Fungal Infection Trust]

You are very welcome - this is an example of why we try to get our patients to help us with communication. The most important questions to a patient are often not answered in clinic.

You might be aware that we run several patient communities where you will find lots of people going through the same things as you and many able to answer all of your other questions - see nacpatients.org.uk and look under 'support'.

[Jonbob73]

Hello StuartArm

I first was diagnosed with an aspergilloma in 1978 when I was 22, a big shock for a young man. I had very severe asthma as a child which scarred my lungs and gave the fungal spores a perfect site to grow. Since then the condition has been managed with inhaled and oral steroids when required. For a number of years I've had a diagnosis of ABPA but recently was diagnosed with Invasive Aspergillosis even though my immune system is not compromised. I too am now taking anti fungal medication but am returning to work next week after a long period. You asked for some positive stories about living with this awful illness and I'm one. I'm now nearly 59 years old so have been living with this condition for 35 plus years and whilst there has been some deterioration in my health I'm continuing to work and live an active lifestyle. I have much to thank my consultant for and have a very good relationship with all the health team.

I hope my story allays some of your fears and I wish you luck for the future.

[Rogertan12 in reply to Jonbob73]

May I know aspergiloma will disappear?

[shirleyi]

Hi, I am new to this site as well. I had 2 fungal balls surgically removed 9 yrs ago. It took a portion of my right upper lobe off. Now they think I may have CPA as I was never treated for aspergillosis after the surgery. But life is good and I will take it one day at a time. I'm sorry at 35 you have to experience this kind of illness. I am 71 yrs old and my new lung Dr. says I've most likely had this for 20 yrs or more. I will start medication soon. Good luck with your diagnosis and God Bless.