My Mom has been suffering with not being able to breath for 4 years now. A month ago they diagnosed her with Aspergillosis. She was never tested for this when she lived in Florida. They never did a biopsy and diagnosed her with stage 4 lung cancer. She went thru 70 treatments of radiation in Florida. When she came to visit me in California in December, I insisted she go to a Doctor out here. They put her on oxygen right away. She was at Loma Linda Hospital a couple times because she had pneumonia. They did a bronchoscopy with an ultrasound and a couple of other tests where they took fluid to culture from her lungs. We were told from the pathology reports she did not have Cancer she has this fungus in her lungs which is causing all her breathing problems. We need a local support group. She and I both need a support group. She has been depressed and very sick still. She doesn't want to leave the house and it's taking a toll on her emotionally and physically. Does anyone know of any groups in Riverside, CA or The Desert? Any advice? Does diet help? She really likes her sweets and I make her eggs and spinach and beets and everything I think may help her. We are uneducated with this disease. If anyone has any advice, please reply. Thank You and God Bless!
My Mom has Aspergillosis : My Mom has... - Aspergillosis and...
I live in the UK so cannot say if there are any support groups for you in either Florida or California. I am sure there must be some. Is your Mum getting any treatment? There are antifungal treatments she can be prescribed and oral steroids which could help. It I am surprised a biopsy was not done in the first instance. Did she have a PET/CT Scan to determine the cancer? I hope you find the support you need and sorry I cannot be of any more help to you. I am waiting to have an appointment at the UK National Aspergillosis Centre. Maybe you could find out if there is anywhere like that in California. A large University hospital may be your best bet there I would think. I know exactly how your Mum feels for a while I was scared of doing anything too but thanks to a chat with a British Lung Foundation nurse I am almost back to normal now just don't do any gardening and lighter exercise.
We visit California most years for a family skiing holiday with my youngest step son who lives in Florida. We love Lake Tahoe and would love to visit in the spring or summer. Where do you live in California?
All the best
Hi Sian...I am sorry it took so long to respond. We live in Riverside. The only therapy she is getting is the vorinconizole for the fungus...2 pills per day. She's on inhalers Advair and Spiriva and I load her up with vitamins everyday. She's on a heart pill and a Pepcid. Her feet keep swelling up and it's making me so nervous. We have an appt Thursday with the therasic surgeon for a possible lobectomy, they don't know if she's a good candidate or not but we will know more Thursday. Thank you for responding. Do you suffer with this as well? Do you have any tips? She has no energy and wants to sleep all the time. I hope you are well. Talk to you soon
I do not have a definite diagnosis yet. I have my appointment on Friday and should know more then. At present I am receiving no treatment. Think if the aspergilloma has not spread and there is only one then I too will have a lobectomy. I was advised to go to a specialist centre because this is rare hardly any of the Docs locally have heard of this and have to look it up - just like me. Hope you get a good Doc on Thursday. I will be thinking of you as I drive the 300 miles to my appointment. Make sure you write out your list of questions for the Doc and make sure he answers them, i make two copies so that I give the Doc one and then ask from my sheet. I leave a space underneath to write the answers in. Some Docs like this and they write the answers in for me.
Good morning Sian...Yes we are seeing a specialist..a therasic surgeon. She really wants to go thru with the surgery if the Dr thinks her body will survive it. She feels she can't go on anymore living like this. We will be thinking of you as well. I hope you get good results and you start feeling better soon. 300 miles is a long drive...safe trip there and back! I will make sure I have my list ready for the Drs. Thank you for the advice. Good Luck on Friday..I will let you know what the Drs say about My Mom as soon as we know. Praying for you both!
It's all so scary this aspergillosis -
My husband has it in the lungs.
He is a forester(lumber) and has worked with wood all his life and in woods an that is where he thinks this has come from mould.
although the medical profession frown upon it my husband has been following the anti candida diet (he too has a very very sweet tooth) and the fungal nail condition he also has seems to be improving and he has more energy - he has been on the diet for 4 weeks so far .
We are lucky to have this site it certainly has helped me.
We hopefull will be in California in Sept for a break to revisit the redwoods. will be the first time my husband has flown since being diagnosed but he has been told he doesn't need oxygen so hopefully the 11 hour flight will be ok.
Hi Marion...thank you for responding. We are in Riverside, Ca. I tried the candida diet for Mom. She doesn't like spicy stuff and is very picky. I started making her shakes with coconut milk, cinnamon, fresh ginger, apple, banana and stevia but they don't go down too smooth. She doesn't have an appetite and I find myself constantly forcing her to eat. I will make whatever she's in the mood for as long as she gets it down. She's not drastically losing weight but she's going down 2-5lbs every Drs appt cause she has no appetite. Her biggest complaint is she wants to sleep all the time. This fungus is no joke. I was so happy she was clear of cancer but this disease seems to be neck to neck with cancer. It's so hard to cure. It's taking a huge toll on my Mom. She has a hard time with everything she does now. I am praying the lobectomy will help her and give her a better quality of life. I hate seeing her suffer like this. I hope your Husband is getting better. I hope you both enjoy your September vacation. What is he taking to help cure the fungus? If you have any tips or ideas that may help her, please let me know. Thank You
I agree with you about this disease - it has me frustrated as it isn't heard of by a lot of people and I feel it has been left up to me, on behalf of my husband to find out about it as much as I can and as much as my brain can understand. We never see the same Dr twice and that I find difficult to deal with - we did have dealings with one locum who was very good basically because he knew about aspergillosis and was very helpful. At present John, is on azithromycin which is taken three times a week - he hasn't been prescribed anti fungal drugs at all - and I am not sure why this is.
Although the diet he is on has been frowned upon by everyprofessional we have seen the fungus which was on fingernails start togrow out and I feel if that is happening externally then surely internally in the lungs the same must be happening - but is that wishful thinking or me being naive ?
It has taken its toll at times on myself , like it sounds as if it is doing to you, not a day goes by without me either googling something medical or mentioning the word aspergillosis!
Anyway thank you for your reply and keep strong.
Marion, I have had to take a 3 day break from the computer Sometimes you just cannot take in the information and sort it properly can you? Especially when you are emotionally involved.
It is because no one has heard of this that I asked for a referral to the Nationaly Aspergillosis Centre in Manchester. I was amazed that there was no problem sending me there as the NHS in Wales is devolved and thought there would be a hold up but because it is the only centre of excellence apparently they could not refuse me a referral and I got my appointment in 6 weeks! Absolutely amazed. Just can't wait until Friday so am keeping myself busy to make the time pass quickly.
Good Luck to you and your hubby.
Glad you are having some help from the diet. I did this some years ago as I had another problem that looked like it could be helped by the diet. It didn't help but at least when that didn't help and I went to the Docs they actually bothered to find out what it was and then through research I found a minimally invasive procedure that cured me of the symptoms.
Enjoy your visit to see the Redwoods.
There are a couple of groups in California - see facebook.com/groups/ALSGLos...
Not sure how active they are but there are individuals in each group who should be contactable.
Also see the more general groups at facebook.com/groups/aspergi...
There are also community resources at nacpatients.org.uk
Sugar feeds fungus. .try to eliminate sugars, breads,corn, peanuts. A book called The Fungus Link..is excellent.
We have the book...My Moms friend mailed it to her last week. She is a very picky eater...I have tried a few recipes and she couldn't eat it. I have cut her back on cakes and sugary foods. She has no energy...I've tried all the iron rich foods to get her up and moving but all she wants to do is sit in the recliner and it breaks my heart cause she would run circles around me. Thank You for responding...any tips or ideas are very appreciated...Thank You!
The idea that too much sugar in our feeds fungal infection is yet to be shown to be true, however we are seeing studies looking at diet and general infection that suggest a diet rich in fat and sugar is associated with getting more infections
This may mean that those with predominantly sugar/fat diets generally have poorer diets and thus fewer vitamins & minerals leading to weaker immune system rather than a direct effect sugar may have - sugar levels in our blood are usually tightly regulated unless someone is diabetic.
We are beginning to see some health effects that might be associated with imbalances in the microbial contents of our guts too - sugar & fat may interfere with that.
A diet rich in plant foods (fruit & vegetables, lower in sugar & fats is something that has been recommended for years for our general health and in respect of avoiding infection that is still great advice!
It makes sense....when I eat junk all day, I am exhausted and I feel it taking a toll on me. I try and stay away from the sweets. My Mom use to bake and cook all day long for us. She always had cakes or cookies made for us when we got home. She loves to bake but since she's been sick, she can't be near the oven or stove. She has to wear oxygen 24hrs a day. Thank you for responding
I try and only eat any thing sweet and sugary like cookies and cakes at the weekend and then usually one cookie a day - so two cookies a week maybe two. The rest of the week I eat mainly fruit and veg with plain meat and fish. I suppose some of our cereal and muesli mixes have added sugar so should go back to my usual porridge with mixed fruit. Have been trying to lose weight recently so have tried to make my breakfasts a little more special by having lots of different ones - sometimes wuth lemon curd - guess that is a no-noI Don't really like bread so tend to eat crispbread anyway because I like it more. I have tried to eat a dairy free diet for my asthma as a neighbour said that helped her but don't really eat too much dairy anyway. Some cheese maybe twice a week - but not always - haven't actually had cheese for ages now - though I do love i,. and drink about 3 cups of tea with only a small amount of milk in every day. I love tea and have decided I can't give it up but could possibly go down to one a day if told it would definitely help. I just have tohave that first cuppa in the morning. Eat yogurt with my breakfast but told the lactose or lactase content of that makes it better than milk - no idea if that is true or not? Although I love sweet things like cookies and cakes I would far rather a lovely perfectly ripe peach or mango, a bowl of fresh raspberries or strawberries mmmmm hungry now!
Sian your making me hungry too
I'm in Moreno Valley. not far from you. Diet is very important. Try to stop all sugars; stevia is a great substitute. Mold loves sugar, like yeast; it grows. You want to starve it out of your system. I have a lot of natural things I'm taking. You could get her started on tea; Pau d' arc, and echinacea with goldenseal, oil of oregano, and olive leaf extract. Breathe easy tea breaks up congestion and really brings the stuff up. I'm drinking it 2x day. Grass fed whey protein/high protein diet is good; the fungus uses up our nutrients so we must double up on everything. Hydration is key. The list of natural products *mostly herbs, supplements is lengthy but worth it. I feel much better than last yr. God bless you both.