GAtherton

Peter Allen

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I am 71 years old and have had problems with my lungs since I was 15. My first experience, when I was 15, was spontaneous pneumothorax. I had several partial collapses, mostly of my right lung. At the age of 18 I was treated by having olive oil injected into the pleural cavity of both lungs. When I was about 50 I was told that this treatment was used on several thousand patients, but never worked.

At the age of about 28 I contracted TB while working in Hong Kong. It went undiagnosed for two years. When it was diagnosed the condition was well advanced. I was feeling very ill and was coughing blood almost continuously. It did not help that I was on a ship going to South Africa with a ship’s doctor who had spent his working life as a missionary in Surinam and did not believe in antibiotics. He told me to eat liquorice and plenty of oranges. When I arrived in South Africa I was so ill I could not complete my journey to Botswana, but was admitted to hospital in Cape Town. This was New Year 1970. I was there for five months before I was fit enough to travel home.

Before the drug treatment for TB was completed, in August 1971, I had a severe haemoptysis and the upper lobe of my right lung was removed.

For many years after this I was quite well and fit, though my lung capacity was not good enough to allow me to climb higher than 8000 ft in the Alps.

In 1986 or 1987 I began feeling tired doing things that hitherto had been easy, but it was not until 1988 that I started coughing blood and went to see a doctor. I was sent to QMC in Nottingham where tests showed that I had bronchiectasis, but blood tests showed that I had been exposed to aspergillus. It was suggested that I should have the expanded middle lobe, now the upper part of my right lung, removed as treatment. The operation failed because of calcification of the pleura. I then resorted to drug treatment and management for the bronchiectasis. This went on for several years. Various antibiotics were tried, but none made any impact on my condition. In general I was tired much of the time, I had no stamina and low fitness. Attempts to exercise to regain fitness took me quite early to the point of exhaustion and left me ill for days.

In 1991 a CT scan showed a small aspergilloma on my right lung, but six months later it had gone.

After that the condition became fairly benign, though my energy levels remained low and I always had a productive cough and haemoptysis from time to time. Only two or three times in several years was the haemoptysis moderate to severe, but then only for a few hours. My medication was simple. I took Serevent inhaler twice daily and antibiotics when there was an infection that needed treatment. My appointments to see the consultant became annual.

With increasing age bringing a lowering of my expectations of my physical capability I could have lived more or less contentedly like this, but in 2004 my condition took a turn for the worse. The cough worsened, the sputum became foul tasting and I became prone to severe infections, some lasting several weeks. The chest physician I saw in Nottingham put me on Azithromycin three times a weeks and tried various other antibiotics to treat the condition, all with little success.

In 2006 a CT scan and bronchoscopy found a large aspergilloma occupying a cavity in the upper part of my right lung. No treatment was given. Then in January 2008 a follow-up CT scan arranged by a junior doctor showed that the aspergilloma, measuring 68 mm across, was very close to the main pulmonary artery. He went into panic mode and told me that it was in danger of eroding the artery, which would leave me to bleed to death. Since the failed operation in 1971 I was regarded as inoperable. He prescribed Itraconazole, but I was given the wrong instructions for taking it. It made me so sick I lost my appetite and lots of weight.

I was not very happy, so I went on an Internet search and found the Aspergillus web site. I asked my GP to arrange for me to be referred to Wythenshawe, which he did and I have been a patient there since April 2008. First I was told that aspergillomas did not cause haemoptysis the way the doctor in Nottingham thought and that I was not in danger of bleeding to death the way he had described. Next I was put on voriconazole. I had stopped itraconazole myself because I was feeling so ill with it. I was also given a box of tranexamic acid in case of a bleed. I took Vfend for several months, but then I started to lose the feeling in my toes. Prof Denning stopped the drug and put me on posaconazole.

There was a three-month hiatus between Vfend and Noxafil, during which time my condition became very bad. My cough was severe and I was producing lots of sputum and mucus plugs. At times I could fill an eggcup during one cough. In August 2009, when I was now on posaconazole, I had a CT scan and found that the aspergilloma had reduced in size. What I had been calling mucus plugs were probably bits of dead fungus. The disintegration of the aspergilloma either started when I was on voriconazole or during the hiatus afterwards. It continued until January 2010 when it seemed to have all gone leaving a large cavity with no fungus in it, but which was part filled by fluid.

On 29th January 2010 I had a very severe haemoptysis. It coincided with my appointment at Wythenshawe. My wife drove me to the hospital from Nottingham with a bowl, some towels and a kitchen roll for company. Dr Felton saw me and admitted me for emergency embolizations. I had the treatment on the following Monday after another very severe bleed. I coughed up about half a litre of blood in 20 minutes. Several blood vessels were stopped off through the femoral artery, but the bleeding did not stop until the final vessel was stopped off from the upper arm. After this Prof Denning told me that I could stop taking posaconazole, but in May 2010 I was admitted for three weeks for a course of IV amphoterycin-B and tazacin.

My condition was fairly stable after that until November 2010 when I started coughing blood again with moderate, but prolonged bleeds about once a month. A CT scan showed a slight change in the shape of the cavity and in April 2011 Prof Denning decided that I should go back onto posaconazole. He thought that letting me stop it had allowed the aspergillus to recolonise the lining of the cavity and cause the bleeding to restart. Immediately the bleeding diminished, but in August 2011 I had another prolonged haemoptysis. After five days I phoned the hospital and was admitted for embolization. Five vessels were blocked off from the femoral artery. One, accessible from the arm, was left. Since then I have had one or two moderate bleeds, so I guess they are going to have to consider doing the one vessel that was left, but otherwise I do not feel too bad.

Peter Allen
November 2011 

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by GAtherton

Pat Peterson

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I had sinus problems in 2006 and it wasn't until I started losing the sight in my right eye that a very wonderful doctor got VERY concerned about me and made it his personal goal to solve what was happening to me. MRI showed I had mysterious fluid around my optic nerve that was crushing it.

I was given large doses of prednisone to relieve that. A biopsy was done of my sinus and Aspergillus Fumagatis was found in my sphenoid sinus. I started taking an anti fungal drug and was taken OFF the prednisone. I had a perfectly good immune system and was in excellent health otherwise, BUT the prednisone lowers your immune system. It amazes me to see that so many people with a fungus ARE taking prednisone which the fungus just FEEDS off of!!!! However, I understand with lung problems it is necessary to breathe. In my case, it was necessary to SEE. My doctor immediately referred me to the wonderful eye doctors, ENTs and sugeons at the UCSD Medical Center in San Diego. They opened a hole in my forhead and scraped out all the fungus they could find and removed some of the compromised bone where the fungus had traveled from my sinus to my optic nerve. Another surgery went up through my sinus and reamed them out! This whole scenerio happened over a 6-week period. They really did not think I would live. I started on Amphotericin B in vein, Voriconazole, and Flucytosine. I also did 30 2-hour treatments in a Hyperbaric Chamber. It is a fact that fungus cannot live in complete oxygen so the oxygen therapy was thought to help and certainly didn't hurt. I lasted on the Amphotericin B for only about 4 weeks, the Flucytosine about 6 months, but took the V-fend for a year. I had MRIs every few months to track return of the fungus. I'm still OK! This is all more than you needed to hear, but perhaps there will be something here to help someone else. Whenever I talk to someone with sinus issues I ALWAYS ask them to talk to their doctor about a possible fungus! It has been 5 years now, and I'm still perfectly healthy Not everyone is lucky enough to have all of their fungus removed surgically. I pray for good health to all. Thanks for listening!

Pat Peterson

Fallbrook, CA, USA 

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by GAtherton

Mick

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Hello

Here is my Aspergillosis story...

I started having problems with my health around the end of 2006. It began with problems eating then succumbing to emphysema due to smoking. I was diagnosed as having Dysphagia and I was loosing weight all the time. My family seemed to think that I simply wasn’t making an effort to eat, telling me to eat small amounts of food at a time, but they could not understand that the food was just not getting into my stomach, it was getting stuck in the food-pipe just outside the stomach and taking ages to work its way down (I later came to believe a fungus ball was lying dormant just outside my oesophagus, the doctors had diagnosed this as a hiatus hernia). As a result of poor diet my immune system was compromised.

I did stop smoking with little problem but soon I began to get one infection after another.
Doctors were often baffled as to the identity of a lot of the infections and as a result I had many stays in hospital while they constantly carried out sputum and blood tests until they could identify the offending bugs. Fortunately, they were always very determined and eventually identified most of the offending culprits and would promptly plan a medication schedule accordingly.

The first very serious threat to my health was in October 2009 when I was admitted to St Thomas’ Hospital suffering from malnutrition and lung infections which resulted in an eight week ‘touch and go’ stay in an isolation ward. I even got Swine flu during my stay. The hospital was magnificent though and an army of medical staff pulled out all the stops until they got me better again. I don’t remember the first few weeks as I was semi conscious most of the time but my wife told me later that the doctors had confirmed that I was gravely ill. Around this time the doctors found the Aspergillus in my lungs so they put me on V-Fend for that, and suddenly I was able to eat again and my weight started to slowly increase, even though I was coughing up huge quantities of thick sputum – and one consultant commented that I was like a sputum factory!

They finally got me back on my feet (wheelchair bound) and I was discharged on 2nd December 2009 – home in time for Christmas. I was discharged from the hospital with the following medications:-
Ethambutol 700mgs
Rifabutin 300mgs
Clarithromycin 500mgs
Moxifloxacin 400mgs
The above drugs (All Very Strong) were mostly for an infection they called “Pulmomary Mycobaterium Xenopi” :)
and the other bacterial infections present.
Voriconazole at 300mgs twice daily for the asper infection
Lansoprazole 30mgs for excess acid.
Carbocistiene for the mucus
Tiotriopium inhaler
Seretide inhaler
Salbutamol inhaler.

I was assigned a district nurse to help me out and monitor my progress. At this point I was unable to walk up the stairs in my house and my mother stayed at our home whilst my wife went to work for a few weeks until I was strong enough to negotiate the stairs and collect food. My health and strength soon started to improve due to good food and a healthy appetite.

Then More Problems… As a result of interactions relating to the cocktail of medication I was on, my eyes started to play up towards the end of March. At the beginning, for the first month or so, I started to see a square white light when I closed my eyes and this lasted about an hour after taking the Voriconazole. When I told the doctors about this (who quite often were registrars that changed frequently from one visit to the next) on two occasions they didn’t attach much significance to it. However, by April 2010 my eyes started to deteriorate rapidly to the point were I could no longer focus on anything or distinguish colours. As an example, if I stood face to face with someone I would not be able to see their features properly. An emergency visit to the clinic resulted and a doctor (who took it very seriously) stopped all medication and arranged for me to be seen by the eye casualty department immediately. By May I was being seen by eye consultants from all over because of the unusual circumstances and rapidity of sight loss. At one point I asked why so many consultants wanted to examine my eyes and was told the problem with the optic nerve deterioration was so unusual that they may never see it again. After the initial months, the deterioration stopped and about a year later I started to notice a slight improvement but I have now been told there is permanent damage to the optic nerve in both eyes. Just recently I was registered as partially sighted and received my CVI (Certificate of Visual Impairment) a few days ago.

I’ll now return to what happened to my lungs after I was taken off all my medications in April. During May I started getting heavy palpitations and really breathless for no reason and on 30th May I was back in hospital. When I had a chest X-ray it showed that the Aspergillus had eaten into my left lung so badly that only a small upper part is left and now that lung does not work at all. The right lung is also badly scarred and very holey.
At this point I was put on Itraconazole which stopped the rot but after a while I started coughing up blood and I was then referred to Manchester as they are the specialists in the treatment of CCPA and other Asper conditions.

I now breathe heavily all through the night and get very breathless very easily during the day. Multiple fungal balls in my lungs are also a constant threat to my health.

Best wishes

Mick 

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by GAtherton

Mary Jo

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This story was sent in to the Aspergillosis Patients support group in 2001.

Mary Jo was an active member of the Aspergillus Support Group and she has suffered from Allergic BronchoPulmonary Aspergillosis (ABPA) for most of her life. This disease is caused by a non-invasive Aspergillus infection of the lungs. The fungus inhabits the air spaces of the lungs, living on the surface of the sensitive lung tissue causing inflammation but does not invade the lung tissue.

This means that although ABPA is not a rapidly fatal disease (i.e. unlike invasive aspergillosis, which needs rapid treatment), at the moment it is usually permanent.

The inflammation of the lung tissue can make breathing difficult, so steroids (e.g. prednisone) are used to control this. The antifungal drug itraconazole (Sporanox) has been recently shown to also help control the disease.

Part 1, early years, lung surgery and diagnosis

When I was a baby I had such severe eczema that my mother was afraid to even pick me up and hold me. The pediatrician told her that she could expect more problems with me later. His words proved to be very prophetic.

By the time I was 3 years old I had asthma. When I was 10 years old they took a chest x-ray and my pediatrician told my mother that I had "walking pneumonia." Naturally that was really the beginnings of ABPA. Anyone out there reading this who has ever been told they have "walking pneumonia" can rest assured that that was when they can certainly date the beginnings of ABPA. About this time my pediatrician left our clinic to go back to school to become an allergist. He told my folks to take me to a general internist because of the problems I was having. I was considered a little young to be going to an internist, and I am sure I was the youngest patient he ever had, but it was a partnership that lasted until his retirement just a few years ago.

About this time the decision was made to send me to the Mayo Clinic. They thought it was really strange that such a young child had asthma and bronchiectasis since they considered bronchiectasis to be an old person's disease. In those days the diagnosis of bronchiectasis was made by a procedure called a bronchogram as they did not use cat scans like they do now. This transpired in the late 60's. My left lung was plugged up and did not clear and they decided to do surgery when I was 12. The upper lobe and lingula were removed. Subsequent doctors have been extremely critical of the medical care I got at this time. They have claimed that at that time a diagnosis could have been made and should have been made and that the surgery should never have been done. Surgery is almost never recommended for ABPA. Mostly because the plugging can and does develop anywhere. When I was a freshman in high school I began to develop plugging in my right lung. At that time my parents began to wonder if I would live to see age 20. They never said much to me about this but I certainly knew that they were very worried. At this time I remember asking one of my doctors what they were going to do when every bit of lung I had was plugged up and they had cut it all out. No one seemed to have an answer to that. When I look back at that time when I was about 15 or 16 my sister claims that there was enormous anxiety with my parents. She claims there was extreme worry about my future or possible lack of it and terrible frustration at the lack of diagnosis and what that meant in terms of my ability to function at that time and what it would mean for the future.

I do not seem to have noticed it as much as she. My brother claims he didn't notice it either. When I was younger and they would put me into the hospital my sister would throw the most enormous hissy fits. I am pretty sure she thought I was never coming back. We would try to think of things to distract her. If I had been at the doctors while she was in school and if I had to go to the hospital my mom and I would quickly dash home to get a suitcase and then get out of the house before she got home from school because she would throw such fits it would be hard to get away from her. One year they even gave her a birthday present early but she ran after us as we drove away and chased the car down the street and threw her doll in the street and my dad had to chase her and bring her back into the house. By my sophomore year in high school the anxieties eased up because at age 16 I finally got a diagnosis. We now knew what was the matter with me. We also knew the prednisone was how it was treated. Ironically enough during these years my general internist had been treating me with prednisone. He did it out of desperation not really knowing that this was in fact the right thing to do. Probably he kept me alive. But he didn't clear my lungs either. Because he would put me on quick tapers. He was concerned because I was developing into a woman at this time and he didn't want to interfere with my growth or anything. He did it the best way he knew how to but he was really relieved to get a diagnosis too. From then on we were a little more aggressive using prednisone. This is 1972 into 1973.

Part 2 early college, inhaled antifungal drugs, systemic symptoms

By the time I was in college, fast tapers of prednisone weren't doing it for me. I was having too many plugs and we decided to put me on alternate day doses. This seemed to work better for me. But like many people with ABPA I was restless and dissatisfied with that and wanted an alternative to prednisone.

At the time there were some studies being done using antifungal drugs. This is now the middle 70's. My doctor and I decided to try inhaled Nystatin. We didn't know at the time that it wasn't effective against Aspergillus but we did it anyway. It helped a little but not a lot. It was very expensive and a lot a trouble, so eventually we abandoned it. I think it probably did help some but I didn't know at the time that in later years, tests would show a positive reaction to Candida which is the organism that it mostly works against. We later decided to try amphotericin B. This is a much stronger drug and is more broad spectrum. Again it was a partial success. We had some trouble with me tolerating it as it is very harsh and has an unfriendly pH. We took steps to try to neutralize the pH but it really didn't help. I used to get coughing jags from trying to inhale it. I couldn't use it every day because my lungs needed to settle down from it. It was sort of like trying to inhale rubbing alcohol or something similar. Very harsh and irritating. Eventually we abandoned that too.

I must say that when I was using it I felt that my lung secretions looked "cleaner" and were less brown looking, but during this time I had never really been able to successfully reduce my prednisone dose and that was my goal when I set out to do this. So it was a mixed bag. It was also a very expensive drug. Highly perishable and sort of difficult to work with. Eventually I just quit using it.

Now we are getting into the early 80's. For years I have contended with multiple symptoms i.e.:

Fatigue

Muscle and joint aches and

pains

Nausea

Diarrhea

Chest pains

Pleurisy

Pneumonias

Low grade fevers

I felt that I had exhausted everything that traditional medicine had to offer and it was time to look at alternatives.

I chose an "alternative allergist" and it was a good move. First of all he never turned out to be particularily radical. He was horrified that I had allergy shots for 10 years as a child. Yes they did make me worse, but had I had a diagnosis during those years we would never have done that either. Allergy shots are a big no no for ABPA and don't ever let anyone tell you differently. This guy did a lot of very complete allergy testing and I had been to other allergists. I found out that I cross react to every mold, yeast and fungi on the face of the earth. He seemed to have a very good understanding of mold allergies in general and I really learned a lot. He learned a lot from me too. He couldn't help me but it was a good experience. Later my other pulmonologist who disapproved of him had all the testing he did on me repeated and got exactly the same results. So everyone got educated that time around. We are now about 1985.

Part 3 ovarian cyst, and deflazacort

In 1985 I had emergency surgery for an ovarian cyst. I don't know how long I had it but I had no symptoms at all until I bent over in pain one day and did not straighten up until after the surgery. The cyst was the size of a grapefruit and I lost my right ovary and tube. I always regretted not having it cultured for fungus because you just never know. I feel that in terms of my overall health I descended into a downward spiral at this point in time. I had certainly always been in very poor health but for some reason I became a lot less functional after this incident.

As it got to be towards the 90's it became clear to me that I was not going to be able to work much longer and that I was going to have to start thinking about disability. I had always had fairly poor attendance and I could only work and not do much of anything else. My family did all my housework and shopping for me and when I got home from work I would take a bath and put on my nighttie and eat a little supper and crawl into bed. On weekends I would just vegetate.

One day in the mail I got a note from my brother along with a clipping from the Rochester paper. It stated that the Mayo Clinic was about to start clinical trials on a drug that was supposed to be "prednisone with no side effects." I decided that I would move heaven and earth to have that drug and so began one of the strangest adventures of my life.

The name of the drug was "deflazacort" and they were already using it in Europe. I already had a doctor in the pulmonary department at the Mayo Clinic. He did everything he could to get me into the study but it was in the allergy department and they did not want ABPA. Our next step was to get the FDA and the drug company to release it to us to just use individually and ignore the study. Again we hit a brick wall. To release a drug on a compassionate use basis the drug needs to be substantially different than anything else already available that is already FDA approved. We could not establish this, since deflazacort was already of the same class of drugs as prednisone. Since the drug was already being used in Europe it seemed that it would be a good idea to try to get some and bring it here. You see I was desperate. If it were everything I wanted it to be I would be able to take very large doses with little risk of side effects and probably continue working and maybe function better than I ever thought possible. Isn't that everyone's dream come true? I was ready to inconvenience anyone I had to,and I was ready to ruin myself financially if necessary. After all, if it worked it would certainly pay for itself. I hired an attorney who specialized in international law. She made a search of foreign doctors who went to American medical schools and who were now practising in their native countries. She wrote to them all. We got one response from a very kind Italian pulmonologist. He prescribed deflazacort for me. The American Express Company had it filled and it was sent by private courier to me. It was hand walked through customs by the courier. And yes. This was very expensive.

When I got the drug I had instructions for taking it. I went to see my doctor and we made the transition from prednisone to deflazcort. When the allergy dept. got wind of this they were very eager to know how much I was taking and how I was feeling etc. My doctor discussed it with them. Do you think that was the right thing for me to have ok'd that? Or should I have told them to go jump in a lake?

I stayed on deflazacort for about a year. I couldn't tell any difference at all between it and prednisone and neither could my doctor. I really don't know what happened with the Mayo Clinic study but I doubt that it ever panned out. As far as I know it never got FDA approval. Had it worked out we would all be on 100 mg of deflazacort a day and going out dancing every night and in vigorous health. This is now 1991.

Part 4 Disability

In May of 1991 I applied for Social Security Disability. I just couldn't hold it together anymore and I was nearly killing myself trying to work. My attendance had gotten bad and I was just about on the verge of complete collapse. A friend of mine who has lupus and multiple chemical sensitivities gave me the name of a good lawyer. She had already been through the process. He was a very good lawyer but it took from May 1991 when I first applied until July 1992 when I actually received some money to settle my case. You definitely need a lawyer to get you through the process. My applications, re-applications and appeals were all denied and it got so far that I actually had a hearing. What was the problem? Certainly I was sick enough and I certainly had a well documented case going back many years.

Part of the problem was that my lung functions were still actually fairly decent despite years of wear and tear. So I couldn't qualify on that alone. The problem mostly turned out to be that there is no government listing for ABPA so I needed to qualify under equivalents. The day of my disability hearing was one of the worst of my life. I was going on trial to prove that I was too sick to work. That just made me feel sicker yet. The big surprise was that it turned out ok. Right before the hearing an elderly gentleman came up to me and introduced himself. He was the doctor that SS hired to be at the hearing. Almost as soon as the judge started the hearing he stood up and announced that the judge should find me disabled. Apparantly he had already made up his mind from reading the records. He then told the judge what equivalents to use. Asthma, Bronchiectasis, and Myasthenia Gravis ( to cover fatigue etc.). One thing that my lawyer and I really underestimated was how much weight would be given to the side effects of prednisone. We had emphasized the disease mostly but the doctor gave great weight to the side effects, and that surprised us a little. Since he considered it medically necessary for me to be on it he included the Myasthenia Gravis equivalent to cover my effects from prednisone.

The hearing did not last that long. I really don't know why they bothered at all since the decision was mostly made from paperwork they already had and it costs money to have a hearing like that. After the hearing the doctor asked to speak to me. My lawyer looked a little nervous but I said ok. He then commented on some of the medical care and treatments I had received ( as always critical of the surgery I had done) and then he proceeded to tell me that most people have a lot of trouble getting diagnosed. He really knew a lot about ABPA. He told me about a medical student at the medical school where he taught who developed ABPA. They diagnosed him with tuberculosis and then proceeded to nearly kill him. So that is a sample of what can happen in an ideal setting. After all, this student had dozens of first rate doctors looking after him. Suffice it to say that I was really relieved to have this settle.

Part 5 odd rashes, sporanox and some final thoughts

In the fall of 1993 I noticed that my skin was really going crazy. I have always had skin problems like eczema and acne but this was really different. It started out as hives. Then after the attack of hives, it would subside. However a few of the welts would remain. Not all of the welts would remain out of each episode though, only a few. This happened all over my body except for my face and scalp and hands. The remaining welts then would harden and raise and they were the funniest looking nodules. They almost looked a little like warts. But not all the remaining welts turned into nodules either. Some of them turned into open sores in little red spots. I looked like I had the measles or chicken pox or something. This was not the first time I had a weird skin problem. As a teenager I began to develop funny looking blood blisters on my hands. We never did figure out what caused that and I still get them to this day. With that in mind I didn't hold out too much hope for getting answers on this situation but went in to see a dermatologist nevertheless. She biopsied two of the nodules and sent them in. They came back negative for every culture she ordered - this time including tests for fungi. She didn't know what to do. The constant itching was driving me insane. After some frustrating visits she finally told me that she was positive it was somehow connected to my disease but that she just couldn't define it and she didn't know what to do for me. She took a large grocery store sack and filled it full of samples of creams and soaps etc., and gave it to me and wished me luck. One more thing for me to have to live with.

Fast forward to winter of 1997. For months I had been looking at advertisements in magazines for Sporanox. The drug company was touting it as a cure for toenail fungus. I knew that it killed aspergillus and they must have thought it reasonably safe if they were advertising directly to consumers. My doctor and I decided it was time to give it a try. He gave me a prescription and told me to start out slowly to make sure I tolerated it. We decided to try 1 100 mg capsule a day. I regret to say that I lasted exactly 3 days on that dose. I developed severe headaches from it, so it looked like it was going to be a failure. One morning a week or so later I got out of bed and looked down at my legs. My skin had really started to clear up for the first time in about 4 years. I thought I was imagining it so I had my folks look and they both were astonished. Only 3 pills and it was really improved. I began taking the capsules apart and dividing up the beads into gelatin capsules so that I could take small doses and my skin almost completely cleared up. My doctor was surprised and continues to this day to give me small amounts of Sporanox to keep my skin clear. Unfortunately I have never noticed much change in my lungs but I doubt that I ever take enough to do much that way.

This about wraps it up but I will just say a few more things.

The most important thing is to have doctors who genuinely care about your welfare. If they don't have all the knowledge, there is nothing to stop them from looking things up, but you can't substitute anything for a caring doctor.

My mother was my best friend and biggest champion. She had a great faith in God and her motto was to trust in Him and just live one day at a time. One time when I was having a particularily bad time she told me not to live one day at a time, but rather just live one minute at a time. And I leave you with that thought.

Appendix A prednisone

Most of us have a love/hate relationship with prednisone. I think this is prefectly normal. We need it to stay alive. It reduces inflammation in our lungs, helps clear plugs and thus minimizing damage to our lungs, and it helps lower our IgE and lessen allergic reaction. Unfortunately it also has numerous side effects. It can affect any part of the body. In my case it has caused weight gain, cataracts and easy bruising. It can cause osteoporosis and other skeletal problems, high blood pressure, ulcers, thin skin, delicate blood vessels, diabetes, cataracts, glaucoma, mental disturbances and many other problems. You should be in close contact with your doctor when using this drug. It also wouldn't hurt to look up all of the side effects in a drug reference book because you may develop something unusual that it would help to be aware of. For the most part prednisone should be used as sparingly as possible. The most sparing way to use it is a quick taper, when you are on it for about a week or so and the first few days are high doses which are rapidly dropped until you go off it. If that can't manage you properly then the next thing to consider would be alternate day doses. This is thought to minimize adrenal suppression. After that, more aggressive schedules would be daily doses and divided doses, which would be more than one dose during a day. The closer the doses are together the more you have an enhanced therapeutic response but the side effects are more pronounced too. As a teenager I was always put on quick tapers because I was still growing up, but by the time I was in college we switched me to a steady alternate day dose because the quick tapers weren't doing it for me and I had grown up a little more. Now I take daily doses.

If and when you taper you should work closely with your doctor. You should be given a tapering schedule to follow. This should be done slowly. To discontinue prednisone abruptly could result in going into shock and or dying. I am not joking. If you experience severe weakness while tapering you should contact your doctor, but first bump up your prednisone dose to compensate for what might be adrenal suppression. Anytime you are on prednisone you should wear medical identification for a period of approximately 2 years after you have gone off it. For most of us that means continuously wearing medical ID. This is very important in case you are in an accident or develop a sudden illness. Medical personnel need to know if they should assume that you are adrenal suppressed. They can compensate for this by giving you IV steroids. To not have this information available could result in your death. This is all information given to me over a number of years by various doctors.

Appendix B Bronchiectasis

I suppose many people wonder how they have come to have two lung diseases for the price of one. How does bronchiectasis happen?

When we develop plugs in our lungs from ABPA they lodge in our bronchial tubes. The mucus becomes jammed in there quite tightly and this causes the affected bronchial tube to literally stretch out of shape. It can almost look like a little balloon. You may be able to clear the plugging out eventually but the bronchial tube never really resumes its original shape. It has been permanently damaged. This can happen in many different areas of the lungs and I have had many different plugs in many sections and I have fairly extensive bronchiectasis. Most people with ABPA develop bronchiectasis from repeated plugging episodes. The best thing to do to minimize this is to use prednisone as best you can to keep the plugging to a minimum. The more bronchiectasis you develop the more problems you are going to have. These problems include decreased lung functions and increased susceptibility to infection. The loss of elasticity from the stretching makes it harder to breathe efficiently. Most of us have asthma too so that is a double whammy. We also are more prone to infection because of this because the lung's ability to clean itself is impaired by the distension. That is because it is hard to cough stuff out of the affected areas and these areas are more likely to accumulate mucus.

At a certain point some people can evolve from this into pulmonary fibrosis and end stage lung disease but this is not necessarily true in any particular case. I am now 45 years old and have had bronchiectasis since at least age 10 and no one has ever told me that I am going in that direction. My lung functions are certainly impaired but I am still in an upright position most days.

I have had severe bronchiectasis going back to childhood and I am infection prone because of this. I take antibiotics approximately once a month to manage this. You may also find some blood in you sputum occasionally due to this. However any time you cough up any significant amount of fresh blood you should be seen immediately on an emergency basis since this could be something more serious than just small amounts of usually drier blood that can go with having bronchiectasis. I believe that in my particular case episodes of pleurisy and chest wall pain are also connected to having bronchiectasis as well as being attributable to the inflammation and exascerbations of ABPA. Anyone out there who has received a diagnosis of bronchiectasis can probably be certain that this reflects the disease activity of ABPA for a period of time that is probably more likely to be a period of years and not weeks or months. These are things that I have been told by various doctors over a number of years.

14th July 2002
It is with great sorrow that we have to report that Mary Jo died recently from complications of the illnesses that she so eloquently wrote about in these articles. She wrote these articles and was an active member of the patients discussion group management team in her efforts to try to help people in a similar circumstances and in that she found much success - we will miss her.

The Aspergillus website team

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by GAtherton

Margaret Griffiths

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My story – medical

I am 75 and I am writing this in the hope of encouraging new patients to believe that diagnoses which sound awful might not be as bad as they sound. So keep reading past the beginning.

Current diagnoses
ABPA and asthma (formerly included bronchiectasis, but this has disappeared from list)
Large granular lymphocytic leukaemia (results in neutropenia and low immunity)
Probable single vessel ischaemic disease.
and, on the way,: 2 sinus ops (Polyps and antroscopies), chronic cystitis and 2 attacks of pyelitis - kidney scan shows bifid ureter, a squint (obvious only to opticians, but I use only one eye at a time), two cataract ops, and hearing aids - and 3 healthy babies. My genes must be a bit odd, yet I have always recovered well.

Born 1937, wartime rationing of all kinds. Parents well, but both had allergies.
Tonsils removed at age 5 – then the fashion for any catarrhal child, even in the war! Made me worse not better, and missed most of first year’s schooling and long periods every winter until I was about 13.
I remember just 3 serious wheezy attacks as a child – never diagnosed. Coughed a lot every winter, but don’t remember anything coming up - perhaps children just swallow it all.

1955: work in an office, awful place, old gas heaters, no ventilation, almost everyone except me a chain smoker. Felt well, but now know first attack of ABPA was in 1956. Totally blocked nose and sinus; eventually consulted doctor who gave me some un-named white pills. Then one day I started to blow my nose – and blew and blew- a mass of sticky brown muck. All cleared within a couple of hours and I thought no more of it – until years later.

1962: We went to work in Nigeria (teaching). Based in a small town, very basic amenities by any Western standard; – paraffin fridge, calor gas cooker and oil lights, tap water not always available. Local ‘hospital’ just a clinic – very little equipment and just one doctor covering a very large area. Climate: 6 months very hot, wet, and humid, 6 months exceedingly dry and dusty – cool at night and very hot (100Fplus) by day. 1964 and 1966: birth of two sons – both well and breastfed for 12 months each. Beautiful country, lovely people, welcoming us as teachers they needed. All sounds idyllic.

But Independence had led to precarious government, which descended into violence – government coups, violence in the villages all around, and later the Biafran civil war – the stuff of night-mares. Told to leave home, and placed in house whose bedroom had large cracks in the wooden floorboards and an odd smell. We were sleeping over an old store-room full of a large colony of bats and their accumulated droppings!!

Biafran army retreated from our home area, we returned to home and school.. October 1967, 2nd baby aged 9 months developed tummy bug – good job I was still breastfeeding. I got tired, developed a cough – which got worse, and worse…… Did not realise how ill I was even though I was soon coughing non-stop for an hour or even two at a time, but nothing came up. No x-ray or blood tests available locally; Dr gave me asthma pills – didn’t help much.

Jan 1968: Returned to very cold UK where I quickly ran a fever; x-ray looked like pneumonia – or TB – or cancer…. In hospital a clever chest physician did bronchospy (with early rigid bronchoscope!), hooked out some brown muck – and was excited when lab diagnosed aspergillosis. Treatment: lying in PD position (head lower than body) and 15mg (I think) daily steroids. Also a green dye to be sprayed down my throat with a scent spray!!

Something worked – after 7 weeks of futile hours of coughing on my tipped up bed, I started to cough brown sticky plugs – long ropes of it, a beaker full in an afternoon when I was alone at home with no phone. At last I could breathe. Consultant appointment due in a couple of days – had nothing moved by then I would have been sent to Oxford for lung resection, now unnecessary. I was young (31) and quickly recovered to normal life.

Consultant warned me that Aspergillosis would recur, especially in later life, but I felt well, we settled, bought a house and had a third baby.

The rest of the story will be familiar to many who had ABPA so long ago. Kind and well-meaning GP had no experience of Aspergillosis, nor did the junior hospital doctors. I owe a great deal to the consultant who diagnosed it, but I did not get to see him very often. I caught all our children’s colds, and coughed and coughed. GP gave me antibiotic for every attack, but neither of us realised that I probably had ABPA flare-ups, so I got no steroids. I think doctors’ training in the 60’s and 70’s warned against over-prescription of steroids, also taught that reassuring the patient was important – but of course reassurance was useless when he did not know anything about ABPA. He was reluctant to give me steroids even when I thought I had a flare-up; in the very worst attack, a registrar at the hospital couldn’t find any sign on my x-ray, called me a ‘fraud’ and gave me a huge bottle of codeine linctus for my cough! On that occasion, I finally got the steroids by making a fuss, then after 10 days futile coughing, spent one whole evening coughing non-stop before I produced a huge plug (with intense pain), followed by a lot more fungal mass. I must have split a vein and coughed blood all the following day, as well as being very sore. My husband finally persuaded GP that I needed hospital - where they tested for all sorts of things like whooping cough! Only at 6 weeks check-up did registrar tell me the obvious - it had been ABPA! A positive test on the one bit I had coughed up at the beginning had been misfiled!
Such was the treatment by well-meaning and good doctors before they knew anything about ABPA, and had nothing written to refer to (nor did I).
Similarly, fungus in my sinus was not immediately recognised, but I was finally referred to a good ENT surgeon, who removed nasal polyps and opened up the sinuses – removing all sinus problems for good.
Youth, basic good health and lifestyle kept me going (though always very tired) until I asked for a second opinion and got referred to the Brompton in 1990. This transformed my life in some ways. Scan on first visit showed bronchiectasis, and plugs around my lungs. I was taught physio – breathing, and huffing - put on permanent steroids, and best of all, the report back to my GP proved that I had neither been hysterical nor imagining illness; I was at last understood, and could get appropriate treatment when I needed it. On daily prednisolone, the annual autumn and spring flare-ups largely disappeared, but every cold led to an acute flare-up.
1995: 3 successive virus infections. In-patient at Brompton – ciproxin and 40mg prednisolone, continued at home for several weeks. So weak I could hardly climb stairs or walk straight; strained both Achilles tendons (always take care when on ciproxin combined with high dose steroids); a friend took me out in a wheelchair; I wondered about my future.
1996: I was at last improving, able to walk again, and sleeping better. Routine appointment at the Brompton; registrar asked about general health and I reported a tummy bug that had taken a long time to clear up; immediate blood test. He phoned next morning – don’t worry but…
Superb haematologist at local hospital did a lot of tests – found a rare leukaemia (see top), which, she said, combined with the fairly rare ABPA, must be unique – yet I was feeling relatively well! Long discussion about possible treatment – all postponed as I felt well.
Since then I have to take any feverish infection seriously, and go into hospital for IV antibiotics if fever high (usually infections are in lungs, or in wounds in my tissue-thin skin). ABPA is not worse, but as I aged, I found the coughing traumatic. I had had to move from the Brompton back to Swindon in 2000. I finally got itraconazole in 2010 from a keen younger Consultant in the local hospital. This has made a huge difference – I still cough, but not so violently nor in such prolonged spells.
I have avoided crowds and public transport in winter ever since the 1995 illness, and amazingly at 75, I now have quite good quality of life. I get very tired and shaky, and have to pace myself both daily and weekly. Skin is very fragile, hair now thin, voice often croaky and sleep often poor. But I can still walk 4 miles or so on a good day, climb all our steep hills (very slowly) and generally enjoy life. Angina can be a nuisance, but I declined angiogram, afraid a vein might be punctured, or infection introduced. Very fortunate to still have my supportive husband and to enjoy simple things – we have not been abroad since return from Nigeria; very local holidays can be just as interesting.

For any interested in facts and figures:
IgE at last count: 11,000. RAST to aspergillosis 4. Neutrophils (the white blood cells most affected by the leukaemia) vary – as low as 0.3 a couple of years ago, and now around 1.0 (I think 2.5 is normal).

What made me ill? – tropical climate? stress of life surrounded by violence and civil war? bat droppings? – I guess I am predisposed genetically to get ABPA, but I also have ‘good’ genes from a very long-lived mother. Did the leukaemia come from all the scans and x-rays I’ve had? Or the result of the stress of the 1995 illness? I’ll never know. Current new patients can be grateful that gone are the days of a scent-spray full of green dye, useless x-rays, and doctors without the internet. The world has changed and I am very grateful for all the research which keeps me going, and to very many NHS staff for all their care.
What have I learned?
Stress is inevitable – avoid it when you can, or recognise and try to deal with it.
Take threatening symptoms seriously, but don’t panic. Always take medication prescribed –unless very good reason not to – then tell your medic.
Avoid all other infections when you can.
Keep away from massive presence of damp and mould, (like the compost heap) but don’t worry about the odd bit.
Make a friend of your GP – who can help you understand your problems and make important decisions.
Eat a healthy diet – plenty of fruit and veg, (I haven’t avoided any food).
When ill, I fend off depression by planning some useful activity each day, however small, and as soon as possible, walk – just as far as the next house, or the end of the Close, or as far as I can, doing a little more each day.

And good wishes to all who suffer – I’ve reached a happy 75 after all that – maybe you will too. 

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by GAtherton

MagStar

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My name is Maggie Murray from Christchurch, New Zealand. I have 3 beautiful grown daughters and I used to work with young offenders here in Christchurch. However my life dramatically changed when I was exposed to Aspergillus Fumigatus through unfiltered air conditioning/heating in our new prison facilities. It was such a concentration of fungal spores after a farmer doused his paddocks with untreated manure! This burnt out my face, throat and lungs.

I actually consider myself lucky in the sense that I realised what was happening at the time, as could feel the prickling sensation of something infiltrating my system as it burnt me. However I did not know what the culprit was until much later.

The diagnoses took 18 months and was a hard fought battle indeed with the establishment. I was hospitalised 4 months after contamination and was nearly dead! I could'nt walk as had lost all co-ordination of my legs, I couldn't stand bright lights and my body was in full on flight/fight as my Adrenals were so over worked. Before being hospitalised I had a few courses of Anti biotic's which only dampened what was happening! In reality this was making the fungal side of things worse.

My specialists here in Christchurch were bull headed and even though I had many fungul balls in Sinuses, and fungal plugs from lungs which all tested heavy growth Aspergillus Fumigatus, they were adamant I did not have an Aspergillus disease!

I did not accept this as know my body and knew what had happened to me, so instead I challenged them to the point of throwing tantrums if I needed to be heard. I finally saw a Allergist/Immunologist who tested me for many things and "Hello" I reacted severely to Aspergillus Fumigatus. He sent a stern message to my ENT and Respiratory specialists which finally got the ball rolling.

I had one sinus surgery which didn't help much! I had told my ENT specialist that I could feel stuff way in the back so eventually after I paid for a deep sinus scan it revealed the Sphenoid area was clogged up, and another surgery was performed.

The flow on effect of having this illness is, Fibromyalgia, Trigeminal Neuralgia, Chronic fatigue, and exhausted adrenals almost like have Post Traumatic Stress syndrone.

I feel quite vindicated after reading in the latest Aspergillus newsletter about the enzyme that initiates stress in the body for the fungus to survive. So many battles over my adrenals and I was made to feel like a crackpot.

I originally went on Sporonox/Prednisone plus Tegratol for the Trigeminal nerve and Tramadol for pain. I detest taking all these medications so slowly weaned myself off all except the Tegratol.

I spent a fortune on Herbal medications and found 3 amazing Intergrative practitioners who I see weekly. I have Chinese Acupuncture, Healing touch Lymphatic drainage therapy and see a Natruopath. I am determined to stay off the hard drugs but every now and again I have an angry flare up and relent and go back on meds short term. My body however does handle it a lot better now. I try hard to keep an alkaline body and use remedies that remove the toxins as this is what makes me feel the worse, thoroughly poisoned actually.

My employers paid my salary for 4 years while I was off work but that all came to an end this May! I am not sure what I will do in the future.
My specialists did all apologise to me eventually:)

I am currently writing an article on Aspergillus from a Patients perpective which I hope to get published in a reputable well read magazine.

I am what my family call a Mold detector and I cannot believe how many places I visit which reek of mold. I believe many people here in Christchurch suufer from Aspergillus disease as so many damp homes, all with heat pumps which don't get cleaned enough, then of course the fatal thing of massive amounts of processed sugary ,yeast ridden foods. Wow what a combination! I hope to enlighten as many people as I can:)

So that's me for now:)

Cheers Maggie

11/11/2011 

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by GAtherton

M. Scott Johansen

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ABPA & prednisolone

I`m 71 year old, male, living south/east in Norway .

Since 7 years old I got asthma, which developed later on to chronic obstructive pulmonary lung disease (copd), and have therefore used a lot of prednisolon during the years combined with antibiotics. In 1993 I got a lung cancer diagnosis, and by surgery, my right lower part of the lung was removed. I was told after the surgery that it was a “good one”.

Years past and every winter I got 3 to 4 lung infections, treated with pred. and antibiotics. However abpa was not, to my knowledge, showing up before 2004, and I did not know anything about it as I believed that my surgery I 1993 was just a “good tumor”. In 2004 I got real seek due to lung infection which none drug could cure. Again, after infinite number of bronchoscopy, I was told that it was suspected lung cancer. Just before surgery however, one doctor stopped it, as he suspected some other reason. Going back to result in 1993 it was confirmed that indeed it was aspergillus. Later on the doctors admitted that in 1993 their knowledge of aspergillus were rather low as it was – and still is – a rather rare illness in Norway( or maybe under diagnostics.) The fact is that I`m the only patient at one of the main university hospital in Oslo, having flare up every year. I was, as most of you, treated with pred. and sporanox that helped for the time being. The strange thing is that since then, once a year, I have only one flare up of aspergillus – and at the same time; end Mai primo June. Why? Don`know, but it is springtime/early summer, whatever that means as for aspegillus. But surely something is in the air at this time of the year. It normally takes 5 to 7 weeks to get rid of it with help of pred. and Sporanox. Starting with 30mg pred. for 2 weeks, and then reducing 5mg./week. Sporanox 400mg/day for 5 to 7 weeks.

Fortunately, I have a doctor with a small lab, where I can measure infection level (crp) and IgE level whenever I wish. My normal IgE is rather high, pending around 1300 when condition is good. Max. has been12000 and lowest 975 measured around 5 times each year the last 8 years. When flare up, IgE level increase to around 6000 within 10 days. Infection level is very low (around 15-20) so it difficult to diagnosis due this measurement except that breathing gets harder. Therefore, IgE level seems to me to be perfect to managing the level of Aspergillus. Sure, doctors have further advanced measurements to get the whole picture, but for me the IgE level is accurate and understandable. As for what is normal IgE level there are many opinions, but most experts I have asked put a limit on max. 1500. Ideal is under 100!!
Prednisolen;
As mentioned I have used a lot of pred, and in the latest years I have started to pay the bill!
2006: within a few weeks my view got rather foggy, and I was diagnosed to have cataracts, which was cured by laser surgery. I was told that excessive use of pred. speed up this illness.
2008: on a brisk walking on a nice early morning in Spain, I suddenly lost control of my feet, and fell over. When finally entering a hospital (recommended) it was diagnosed to be Achille failure as the Achilles tendons on both legs were torn. Extremely rare that it should happen in both legs at the same time! The doctors first question was; are you on pred? Oh yes indeed! 4 weeks in a wheelchair gives you some perspective of another life. The flight back home was a nightmare.
2010: late summer I got very tired and exhausted. After endless examinations it was stated that I got adrenal failure (secondary failure), which in many (maybe most) cases is a result of long time use of pred. As sure many of you known when adrenal failure, more or less none cortisol is produced. Cortisol is necessary to cope with daily stress. Countermeasure is, ironically, 25mg/day. cortison (which is “equal” with 5mg. pred.) The production of cortisol is managed by the pituitary (a small “peanut” in your brain). When long time use of pred., the signal to the adrenal gets to high, and after a while the adrenal start sleeping, reducing or stopping the production of cortisol. When that happens you will feel very tired and completely out of normal behaviour.
2011: In connection with adrenal failure, doctors also suspected low bone density. Test was done,( special X-ray) and yes, I was low into the red scale and told that I got osteoporosis. Suspected reason; using pred. on a high level for a long time. I have to add the fact that osteoporosis is more common in Scandinavia then in the rest of Europe, reasons unknown. Countermeasures; A daily shot of the drug Forsteo, every day for 2 year which will to a certain degree rebuild my bone density. This treatment can only be provided once in your lifetime. Same year they also took vitamin tests and I was told that vitamin D was none existent. This is claimed to be very common for older people and for sure it don’t help your bone density.( I believe Mr Graham Atherton once told us about this matter, combined with abpa, on this site ). Inthe report it was concluded; ”. In other words most patients who had ABPA also had lower levels of vitamin D.”
I was put on D-Forte (30.000 IE) a week for 4 weeks, and then one D-Forte every 3 week as maintenance. Unfortunately, I started too late with Forsteo, as I already experienced a compression fracture in my back in last October, fortunately rather high up (H7). Though rather painful.

Conclusion;
Of course may age is a factor in this matter, but I regret all the times when told by the doctors when having lung infection; “yes take antibiotics and add pred. also – just in case!!!!!”
Lately (last year), I have reduced pred. with 50%, and guess what, antibiotics does the job in case of just my “normal” lung infections. However, when flare up of aspergillus I just have to use pred. as Sporanox do not work alone. We are all not the same person, and one case is none case as doctors put it, but to my experience doctors generally are too conservative and the more expert, the more they tend to only concentrate on your lung problem or whatever illness you suffer from. They don`t want any backfire in their area.
I have asked the doctors for replacement drug for pred. but so far none positive response. Either they state that they have none experience with “new drugs” or don’t want to speculate in new drugs as old and proven pred. do the job.
It is not my intention to frighten anybody but just to consider the amount of pred. and try to find your own limits. But never take it “just in case”, and if you find substitute it might be a better solution. And tell us on this site if you have tried replacement drug which seems to help. I have noted some of you who have tried Xolair and I think it would be very interesting if all of you tell us about your experience as prednisolen is a wonder drug, but it has too many dark sides. And to my knowledge 90% on this site use pred. so the importance to find substitute drug should be rather important for all of us.

I`m now fed up with the winter season and will go to Spain for 6 weeks, starting 22.febr. – and get some D vitamin the natural way.

Thank you for reading and excuse my misspelling and other mistakes, as English language is my second (or maybe third) language.

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by GAtherton

Lisa McNeil

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In November 2003 I suffered 2 ectopic pregnancies within weeks of each other, I had been pregnant with twins. The first operation bled the baby that was trapped in my tube (they were trying to save the tube) but unfortunately there was another baby in there and 10 days later it ruptured my fallopian tube and I was rushed into emergency theatre. I left hospital with a terrible chest infection and on antibiotics. After months of a repeat of what happened in 1997 I was again diagnosed with bronchiestasis, this times in both lungs - Nightmare!! It was April 2004. The consultant had also detected something wrong with my heart and after more tests I was also diagnosed with cardiomyopathy. I decided to reduce my hours at work to 30 a week to try to help with my energy levels and help keep me well. Still, I spent the next 6 years in and out of hospital, taking lots of time off work sick and swallowing many many antibiotics. I saw the consultant every 6 months and he asked me the same questions every time. "How much sputum are you bringing up?"," what colour is it?", "How many lots of antibiotics have you had since I last saw you?" and then he sent me on my way.

After a particularly bad winter, I had spent virtually the whole of January 2010 in bed and I was thoroughly fed up and feeling very lonely. Whilst my family were brilliant and very supportive they really didn't understand what I was going through. I decided to look for others with my condition and found Bronciestasis R Us on line. Within minutes of registering a member had contacted me to welcome me aboard and offer me some advice which turned out to be the best advice I have ever been given. He told me that the key to managing this condition was to make sure you had the right consultant. I searched on a database and after bringing up 183 possible matches, Prof Denning was at the top. I asked my GP for a referral and within a week Prof D had agreed to see me. 3 weeks later just before Easter in 2010 I was in front of this wonderful man clutching my medical records and X-rays under one arm and shaking his hand with the other. Anyone who knows this man and his team will know what the next few weeks were like. He took over 17 blood samples, did scans and x-rays, made me cough regularly into sputum pots and got a Dr in Leicester to stick something painful up my nose and scrape away some brain cells!! Within a month he told me I had a mannose binding lectin deficiency (immune system) and aspergillos. He started me on a daily dose of azithromycn and itraconzole. I was seeing him monthly and after a couple of months he changed the itraconzole to sporanox. I have never looked back. The change in me was almost immediate. I had more energy, no infections and felt great. For the first time in years my husband and I could plan things without feeling worried that they might never happen. I stopped work as I felt enough was enough and if I was going to have any bad days I wanted to make sure the good ones were spent doing things I wanted to and enjoying myself. My husband is an angel.

We cleared out the loft in October 2011 and I ended up in hospital in terrible pain. I was put on morphine and doxi and stayed there for a week. I have been well since.............. 

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by GAtherton