While visiting Arizona I decided to see new homes in all areas of Tucson. The sky was blue, the sun was bright and the air was warm. This was much more appealing than the Pacific Northwest’s overcast and rainy winters.
I stayed in Tucson longer than expected due to the September 11th, 2001 terror attacks on our country. This attack on America and the horrendous loss of life was overwhelming to me. I delayed my trip back home for a while. It was scary to think about flying after that, but it was important to return with the seasons changing. As soon as I returned home I decided to do a lot of yard work to take my mind off of the insanity and horror of what happened to so many people in New York, Washington D.C. and Pennsylvania. One week after arriving home I suddenly became extremely ill. I had trouble breathing and in no time became so desperately ill I was bedridden. Usually I avoided doctors, preferring to just get better from illnesses on my own, but I soon felt I had no choice but to be taken to one.
I never had anything wrong with me prior to my VF. I was very active and extremely healthy. When Valley Fever hit me, though, I thought my life as I knew it was over.
The following is a list of Valley Fever symptoms I endured at various points during my illness:
Shortness of breath/wheezing, chronic and severe coughing, severe chest pain/pressure (later I would be found to have cocci pneumonia, pleural effusion and permanent scarring from infiltrates that made my lung X-ray look like a road map), daily night sweats/chills, first bad headaches and then severe continuous head pain, nausea, loss of appetite, lost 8 pounds right away, rash, burning sensation in various parts of my body including joints and my right foot, chronic exhaustion/fatigue, muscle aches and stiffness, severe joint pain, right ankle swelling, photosensitvity, neck stiffness, hypercalcemia, severe arm pain, every bone in my body hurt and I was unable to focus or concentrate. My eyes hurt but it wasn’t until 10 years later I was found to have optic nerve damage from my VF.
After looking at my chest X-ray, my doctor informed me that he thought I had a bad case of bacterial pneumonia. I continued to get worse. My initial doctor wanted me to be hospitalized but I refused. Previous family tragedies caused by hospital failures were too strong in my mind, even as my own health suffered. Instead I was sent to see a pulmonologist.
My Near-Death Experience
My pulmonary doctor performed a bronchoscopy, hoping to identify the cause of what I literally seemed to be dying from. I could barely breathe, my head was in excruciating pain and my wheezing sounded like the death rattle. I truly believed I was dying.
One evening I told my husband that I probably went to the doctor too late to be helped and that I would rather die at home than in a hospital. I expected to be dead by morning. I asked him to tell my sons that I loved them very much and that I was very proud of both of them. I asked him to tell them I was sorry I would not be around to see all the wonderous things they were meant to do and accomplish with their lives.
It was a complete shock to me that I actually survived and woke up the next morning. I thought to myself, “Wow! You are really still here.” Unfortunately, the excruciating pain in my head and the rest of my body continued. One day the pain was so intense inside my skull that I wished for death. In that moment I suddenly had my near-death experience (I will describe in-depth my near-death experience in our next Valley Fever book). It was shortly after that experience that I knew I was going to survive. I also knew I eventually needed to warn others about this hidden disease. People needed to learn that this disease existed and how easy it was to contract.
“You have Valley Fever”
Eventually my bronchoscopy results came in. While laying in bed gasping for air with the feeling that cinder blocks were on my chest, I received a call from the pulmonologist. He informed me that he knew why I was so sick. It wasn’t bacterial or viral pneumonia. He happily announced, “You have Valley Fever.” Naturally, he wasn’t happy about my suffering but he was glad to finally know the cause of my illness. The doctor went on to explain what little he knew about this disease (coccidioidomycosis). I had never heard of Valley Fever before my diagnosis.
I was only given one titer test which came back at a 1:64 so I do not know if it went higher. Any titer above 1:16 is typically associated with dissemination, meaning it would have been expected that my Valley Fever had spread from my lung to elsewhere in my body.
My case was especially serious as I believe my infection disseminated to my brain, causing what is known as cocci meningitis. I was never tested for it as I don’t think my doctors knew what to look for, but descriptions of disseminated coccidioidal meningitis matched my symptoms perfectly. Headaches are common with Valley Fever, but I had a severe whole-head and neck pain. That pain never eased up day in and day out, seemingly forever. Tears would involuntarily stream down my face continuously. The way I described it to my doctors was that my brain was pulsating, enlarging and trying to push its way out of my skull but my skull wouldn’t let it leave. The head pain was so excruciating that I would just pass out in bed for hours. After reading about meningitis and considering my 1:64 titer, I believe I was one of the few victims of Valley Fever to survive disseminated meningitis without antifungal medication. Years later, optic nerve damage was discovered in one eye and a renowned ophthalmologist/glaucoma specialist told me Valley Fever meningitis was the cause.
A tremendous amount of pain, misery and time had elapsed. Even when I felt somewhat better I knew there was permanent damage. There was so much vein-like scarring due to the expansion of the fungal growths known as infiltrates that an X-ray of my lung looked like a road map. It was horrifying to look at and know what I now had to live with. The scars, unfortunately, will remain that way for life. The pulmonologist said he was afraid to start me on any of the antifungal drugs used in coccidioidomycosis treatment at that point. In fact, he thought the drugs were so toxic that taking them might cause my death rather than save my life. The doctor told me, “You survived this on your own. We didn’t do a damn thing to help you.” He obviously wanted to but it just didn’t work out that way.
A lengthy period of time had elapsed. Thankfully, my symptoms began to improve. I started to come back to the world of the living. Some days were better than others. At times it still felt as if there were cinder blocks on my chest. I continued to have breathing problems and sometimes had horrible joint and bone pain in a shoulder, elbow or hand. The middle of the night was when the pain was the worst. The burning sensations in those areas were extremely debilitating and painful to say the least. Sometimes, but fortunately not always, I had the return of the burning sensation and swelling in my right ankle. This was also prevalent during the height of my illness. At least the entire foot no longer felt like it was on fire.
2019 UPDATE
All the severe problems and pains I had are gone. Ten years into our research we became the only pioneers to formulate a nutrition plan using the science of this disease that David had researched in order to help me and other people with VF. Most doctors were not and still are not interested in hearing that nutrition can help Valley Fever patients. It seems no one in the medical profession has done this specific research. However, it worked for me and we have been helping others ever since. What works for other fungal diseases does not necessarily work for this systemic fungal parasite.
For many years people asked about the foods and supplements that helped me and fought against the problems Valley Fever can cause. We decided to have a page on this website with some of the foods, supplements and other items that I used and still use today. We are in the process of writing a book on health and wellness for people with Valley Fever, other diseases, and those who want to remain healthy and become the best they can be. It is imperative to reach as many people as possible who need this knowledge. This even goes beyond our Valley Fever-related work.
David Filip: Co-Founder
My son David is a freelance writer and medical document researcher. He unfortunately witnessed the horrors of Valley Fever by taking care of me day and night. He gave me a walkie-talkie to use if I needed him for anything in the middle of the night. As far as I am concerned, David helped save my life.
My miraculous survival after contracting this disease and having a near-death experience inspired our organization’s name “Valley Fever Survivor” and David was eager to contribute.
David has since become the world’s leading Valley Fever scholar, information specialist and consultant working outside the medical profession. He read thousands of peer reviewed journal articles, interviewed mycologists, physicians, health officials and scientists in this field and has been in contact with thousands of Valley Fever patients through our website and social media. David’s research gives him the unique perspective and knowledge with the ability to “connect the dots” between problems caused by this illness without being held back by the politics of an institutional bureaucracy.
Valley Fever Can Strike Down Anyone Who Breathes
In 2001 I researched Arizona very carefully before I visited, specifically looking for important facts to know about Tucson, Phoenix and Arizona as a whole. I found no mention of this disease at the tourist bureau, chamber of commerce, or state health department websites. No tourism literature mentioned Valley Fever either. The federal and state authorities’ inaction and silence forced me to be exposed to an incurable and deadly naturally occurring biohazard without my knowledge or consent. I would never have chosen to go there if I had heard about Valley Fever.
Before contracting Valley Fever, I exercised every day and tried to eat a good diet. I believe that may have helped me to survive my case of Valley Fever. After Dave’s extensive pioneering research into studies of the foods and supplements that would improve matters the most and help me “come back to the world of the living,” it completely changed my life. My severe pains were gone. I intend to continue the new research-based habits to maintain my health. We now use this knowledge not only to help those suffering with Valley Fever but to help anyone to improve their immune system and overall general health.
I was not in any of the risk groups for a severe case of Valley Fever at all (no immune deficiency, no other illnesses, not African-American or Filipino, not over 65, etc.), so my infection showcases Valley Fever’s ability to hit anyone. Further, Dave’s research into Valley Fever’s medical history clearly proves anyone at any age can suffer from the worst this disease has to offer. Valley Fever can strike down anyone who breathes. Even a child still in the womb is not safe.
Valley Fever Survivor® was created to educate people everywhere about the potentially debilitating consequences of a Valley Fever (coccidioidomycosis) infection. Our website and advocacy uses up-to-date medical research to improve awareness of this disease. The founders of VFS are also the authors of “Valley Fever Epidemic,” the first and only informational Valley Fever book designed for general audiences. David Filip has also written the “Official Valley Fever Survivor Medical Glossary” which enables people to understand many of the medical terms used by their doctors. He also adapted the hard-won knowledge from his Valley Fever work in The Smart Patient’s Handbook to help people with any health concern. David is presently working on the next Valley Fever book, which will sound the alarm from coast to coast and around the world with the evidence it presents.
Our Call to Action
When I was finally diagnosed with Valley Fever in 2001 there weren’t any Valley Fever articles in the news much less anyone speaking out loud or writing the words “Valley Fever.” We coined the term “Valley Fever Survivor” back then and eventually made it our organization’s officially federally registered name. Dave and I were the first people outside the medical profession and outside the endemic areas to talk about the Valley Fever epidemic and to try to get the media interested in this hidden biohazard and the ramifications of keeping this a secret from the public at large. Who would believe that a systemic fungal parasite that had been regulated as a bioterrorist weapon in two antiterrorism laws could be kept a “local secret” for more than a century? That is exactly what was going on. Even today few aspects of the local secret are known to the public. This is unacceptable and we are committed to making this public health hazard known worldwide.
For years we asked, begged and demanded the state of Arizona put something about Valley Fever on their state health department website and elsewhere but they refused to do so. As VFS grew, we made contact with many thousands of people and we personally disseminated information to the public. Eventually the state of Arizona’s health department was forced to put some partial information about VF onto their web page. Some people say we were instrumental in finally getting Valley Fever recognized by being a thorn in the side of the state of Arizona’s health department. If that is the case we gladly accept that mantle. There was and still is a desperate need to warn and give accurate information rather than misleading, whitewashed and useless info to the public. We remain dedicated to making Valley Fever a known and understood household name worldwide. Only then will public health be protected and the chronically underfunded medical projects will receive the attention they need. For more information about our work, click here to learn more about Valley Fever Survivor.
For all those who died or suffered the horrors of Valley Fever, we became a voice for action so that others will not have to suffer the same fate. Alerting people in the USA and around the world about this incurable, debilitating and deadly threat is of the utmost importance. Education, accurate information and warnings are vital in the fight against Valley Fever.
