Dear aurilee,

I haven't heard of this before, but it sounds horrible. I am so so sorry about the pain your going through as well as losing your rental and your posessions. I'm so glad that your health is on the mend, but it sounds like the Department of Health (where you live) really needs to take responsibility for this. Have you contacted your lawmakers? I really hope you will get some justice and that you'll recover quickly. I have to agree that it's bad enough to be sick, but then to have the illness pull you into a financial mess is just icing on the cake! I really hope someone will have some answers for you here. Peace and blessings, candice

Candice,

Thank you for your interest and taking the time to write. Yes, I have contacted my legislator and she has responded. I don't know how long it will take her to do anything. The plus side is that she is a nurse, so she understands the health risks of mold and mycotoxins. There also is a state college in our county where several employees were sickened by mold. I believe she is on it.

I have learned in my research that many patients die from systemic fungal infections, because doctors don't know to look for it. Aspergillus Infection is common in chemotherapy patients and AIDS. I did find a support group on yahoo. It is frightening to hear the group stories of how sick people are from mold. The founder of the group has a port in her chest for antifungal meds. I feel very lucky when I hear their stories.

I did state earlier that I am on the mend, but by no means recovered. I am terrified of getting a bacterial infection, because antibiotics cause the fungus to proliferate. I currently avoid sugar, other sweets, yeast, mushrooms, and many other foods. I also take a lot of supplements and probiotics. My doctor swore I would be allergic to wheat, but I am not. Instead I am intolerant to most of the foods I had been eating. It is crazy making!

Hi Aurilee,

My name is Serena Wells and i was diagnosed with Invasive Aspergillosis after 5 months of not knowing why I was sick. I was near death at the time and thank god for my pulmonary doctor who started testing right away and found after almost two months that I did Have Aspergillus in Both the upper lobes of my lungs. After hospitalizations and allergic reactions to the medication. I was started on Itraconazole which started to work but not for long. This called for another trip to the hospital and a semi long stay to start a Picc Line IV medication called Caspofungin. I was one these two medications for almost 8 months and then taking off. I relapsed after six months and was put back inthe hospital to have a Port Surgically Implanted in my chest to take the Caspofungin for a longer period of time. I was on Caspofungin until this past thursday when then doctors stopped the medication because they believe I may be stable enough to stop it with out a relapse of a longer period of time. We stopped for several different reasons. One, I can only take two of the four medications on the market for this as I am Allergic to the others. Two, I can not take the risk of becoming immune to the medication and the longer the IV is in the more damage that can happen to the veins and the higher risk of Blood Infections can happen. I do feel pretty good right now and know that everyday is a challenge and I need to keep my spirits up. I know there may be more people out there who have not been diagnosed yet and want to reach out to as many of them as I can.

I am one of the lucky ones, this disease has not taken my life. There are others hat are less fortunate then I. People who get this disease must have an underlining health condition for example, Leukemia, HIV have had a transplant or in my case i used prednisone for my asthma but also have a lot of scar tissue for several lung operations from my lungs collapsing 18 times. Healthy people with good immune systems breath Aspergillus everyday and do not get sick form it. It is in dirt, feces, on dust particles in old and new houses that have a moisture problems.

I have great doctors and it is becasue of them that I am here today! With out them I would of never been diagnosed and treated. I am in no way cured becasue there is no cure at this time only controlling it form growing.

Aurilee Thank you for starting this

Serena Wells

Hello aurilee. So glad to hear that someone is "on it"! Yea! That is great. I'm so sorry to hear about how sick people are from this, and that they are dying!?! Hopefully lots of people will stand up with you and fight this. Also, so good to know that there are others who really understand what you're going through. Just some emotional support is great in times like this and to know that you can heal is a great hope. These are strange things, but we have to fight for our health it seems and we CAN do it. God bless, candice

Candice,

Thanks for your support. I know Aurilee from the support group I started on yahoo. She has been one of our active members. Some of our members just like to have the support through reading the post while others are active in responding. Either way any support we can give each and every one of them is essential in ones recovery.

I have letters in to our Senators, Department of Health and other agencies to try to have this disease tracked so we can then find a cure. Diabetes, Cancer and other well know diseases today once where as rare as Aspergillus Fungal Infections, only because they were not looked for by doctor's and were not tracked disease. I know there are more people out there with Aspergillus Fungal Infections they are just not being tested and treated. This disease affects adult and children alike. Everyone may have a different kind or need different treatments but we all have the strong will to survive and with the help and support of others we will.

As stated before we are trying to educate as many people as possible about this sometimes-fatal disease. So I would like to thank you and all that visit this site for your support.

Stay Strong

Serena Wells

Hello Aurilee,

From researching for the last 2.5 years on another 'disease' I have found fungi to be a major culprit in just about all diseases, although usually the doctors dismiss it. I fact, upon a dr visit to get some Lyme tests done, I asked for a fungal test to which he replied he didn't believe in 'all that stuff'. hmmmm.

In any case, there is so much information on the internet about fungus, the different types, and the natural remedies for it. I'm a firm believer in keeping the blood on the alkaline side and staying away from sugar, which feeds fungi. Candida is another ubiquitous fungi which, although ubiquitous in and on everyone, when there is an inbalance in flora (good vs. bad bacteria) the fungus, which is normally symbiotic, becomes parasitic. There is a doctor (oncologist) in Italy who wrote a book called, "Cancer is a Fungus", Dr. Simoncini. He also has a website if you google it.

Best of luck!

Hello Serena.

Reading all of this is really interesting, frustrating and makes me very sad too. Although I do not personally suffer from this, I have a beloved aunt who is allergic to just about everything and molds (fungus) are the worst for her. I guess I can relate in that I too suffer from something that is not well understood and highly misdiagnosed (celiac disease). So I do suffer, just differently. Either way it's no fun. I will look into this more and talk to my aunt about it. If we can help each other, I think we should. Thanks Serena. Peace, candice

I don't have cancer or HIV, but I do have a history of adult onset allergies. They were caused by an occupational exposure to formaldehyde in an office setting about twenty years ago. In 2003 I rented a small house that had some water in the basement. In the early summer my rental exploded with mold growth. I did not have any allergic response to the mold. I bleached and cleaned what I could and discarded the rest. Then I started looking for new housing.

I found an apartment in an old Victorian house. It was a non-smoking building, so I took it. Three years into the rental I came down with a Strep infection. After ten days of antibiotics I felt well. It was only a week later that I came down with another sore throat. This time the culture came back as Staph Aureus. I had a staph infection in my throat and sinuses for months before an Infectious Disease Specialist diagnosed Aspergillosis. She believes the fungus caused the bacterial infection. Once I went on antifungals the staph went away.

I hired an environmental firm to inspect my apartment. They found a voluminous and grotesque amount of fungal growth under my floors. If I had continued on antibiotics the fungal infection could have killed me. After reading Serena's story I thank God it went no further then my nose and throat. Like Serena, I had allergic reaction to two out of three antifungal drugs. Like Aurilee, there are no mold standards in my county, so my landlords put in a new linoleum floor and a new tenant. I have been too sick to look for an attorney, but I understand that I have three years before my statute of limitations runs out. I have spent $11,000 out of pocket on medical and moving expenses since the summer of 2008. It has been no picnic.

In response to kathy ridge:

I will look into the book you mention. I have been concerned because the research I have done reveals that the mycotoxins given off by penicillium mold and aspergillus mold are very potent carcinogens.

My Ear Nose & Throat specialist would not do a fungal culture on me. He said it was unlikely. I feel bad, because I have had a 30 year relationship with this doctor. I babysat for his kids when I was a teenager. I haven't been back to him, yet I had sent him a release to mail my records to a new doctor. I need to let him know what is going on with my treatment. The medical community needs a real education in this area.

I also want to add that I did not have a compromised immune system until I lived in a mold infested rental.

Greetings to all,

My story is a complicated one. I have survived juvenile diabetes for 32 yrs and have been on an insulin pump for aprox 10 yrs. I developed a softball size cyst in my left lung 10 yrs ago (which was diagnosed as cancer by many physicians). I traveled from Illinois to Nashville, Tn quite by accident to be there for the premature birth of my 10 yr old grandson. The physicians there sent me to see a pulmonologist @Vanderbilt. The saga continued with a resection of the upper left lung that showed pseudomonas (sp)....no cancer. I was quite ill and on a ventilator with pneumonia. I recovered completely after 1 year. 10 years later I developed a low grade temp, constriction of the lungs, with a cough that continued to get worse over a 5 month period. I again was hospitalized @ Vanderbilt for a two week battle and was finally diagnosed with aspergillus fumigatus of which there is no cure. I was treated with Vfend for an extended 5 month period to which I regained my strength and was working a 40 hour week again @ my job of 19 years. I had continued homeostasis (bleeding of the lungs) which was cauterized on several occasions also @Vanderbilt. Now the clincher.....I had to have a quadruple bypass surgery on Aug 7th, 2008. The Drs were considering doing another lung resection, but I failed to pass the stress test on my heart. The lung surgery has been postponed until this year possibly.

I have had the privilege of being a patient of the best team (or as we joke and say with me it has been a village). From my understanding I breathed in the mold which is a standard bread mold and due to my compromised immune system.....IT GREW!

I have been told by my physicians and any one that knows my personally that my positive attitude has sustained my life. Just to let you know what can be accomplished with a positive mental attitude: I am currently disabled, but am working on occasion @ my old job already, and am working on a resume for a part-time job. I had all of our 7 grandchildren here for the Holidays, have painted 3 ceilings in my old Victorian house, and am now wallpapering my kitchen.

Bless all of you dealing with your illness, but think POSITIVE! Always, Raye

PS: My lack of medical knowledge is minimal, I have learned from experience only. I just know that there are different aspergillosis.

Hello Serena and all who post here! I was reading over the posts on this site. My sister has been ill for 22 years with multiple diagnoses including chronic fatigue, fibromyalgia, and allergies to mold. I know aspergilli (spelling??) is one type of mold and one type of systematic fungal infection, but what are the other types of systematic fungal infections? How were you diagnosed? What kinds of tests did the doctors do? Who are the doctors you see and where are they located? Are there any books, articles, websites that would help? She is feeling really terrible right now and wonders if the mold and possible aspergillosis has anything to do with it. Any help that anyone here could give would be most appreciated.

Thank you!

God bless,

Barb

Also, how is aspergillosis (or any systematic fungal infection) treated? With what meds and/or procedures? I guess I didn't make those questions clear in my last post. Any responses would be appreciated.

Thank you!

Barb

Barb,

My aspergillus fumgatus was treated with Vfend, more powerful than Sporonox another anit-fungal drug.

If the mold is not in her lungs there is a skin test, I think that can tell you if she has the mold.

It is not a hard thing to diagnose, but it must specifically be checked for.

My suggestion in the Central States would be Vanderbilt, Nashville, Tn or Mayo, Rochester, Mn.

Wish I could do more to answer your questions, but they do need to put to a MD. The US support group or the UK support group can give you a lot more information than I have available.

Think Positive!, Stay Strong!, Always, Raye

Good Day To Everyone,

People can find out more information about aspergillus fungal infections by going to yahoo groups. I can not give a direct address to the groups as that would go against the terms of the message board. I wish I could.

There are the aspergillussupport-us based here in the USA and then there is the aspergillus support or Fungal Research Trust which is based in the UK

There is a lot of information and links form the groups to research aspergillus infections.

I hop ethis helps those who are looking to find out more about this disease and the different kinds and how they are treated. And for those who would liek to support those affected by this disease.

Stay Strong is our motto at aspergillussupport-us

Serena Wells

In response to Barb:

Hi Barb,

I have given your post a lot of thought and I want to be clear that an allergy to aspergillis is not the same as Aspergillosis. There are many species of mold out there and for good reason. They play an important role in the ecosystem. Some can also be very harmful to human and pet health. Simple yeast can become systemic in the body and take a very long time to treat.

I was diagnosed by a sinus culture and an endoscopy. The doctor also took into account the longterm fever, weight loss, sinusitis, etc. I saw Dr. Donald Dennis in Atlanta. I was referred by Dr. Kaye Kilburn in Pasadena, CA. Dr. Kilburn published a book titled Molds & Mycotoxins: Papers from an International Symposium on Molds. I read the papers and chose Dr. Dennis. Another option was the Mayo Clinic.

This is an infection for an Infectious Disease MD. I went for a consult with a group and they missed it. I was very sick for months before I flew to Atlanta, GA for treatment. Afungal infection was suspected after my rental was inspected and tested.

Hope this helps.

Aurilee