This is the archive of previous Valley Fever Survivor® front page web updates starting from March 2003. The most recently archived updates are listed first. All Facts and Commentary numbers were accurate at the time of the update but the numbers may have shifted as new information was added or rearranged to improve readability.
April 2008: Through March 22nd, nearly 1,200 people have been diagnosed with Valley Fever in Arizona this year. Using the CDC's EID model, this means 60,000 people in Arizona were estimated to be infected in this short time but 98% remain undiagnosed.
March 2008: We have a new installment of Sharon's Desk that discusses the current state of vaccine funding.
February Reminder: The next meeting of the Valley Fever Survivor Support Group (VFSSG) chapter in Phoenix/Glendale is scheduled for 6:30pm on Wednesday, February 13th. It will take place at
Phoenix Baptist Hospital
2000 W. Bethany Home Road
Phoenix, AZ 85015
Everyone from any city is welcome.
Important VFS News Alert!
January 2008: We were given the following information from California's vaccine project, the Valley Fever Americas Foundation:
With California state funding non-existent, and no federal appropriation in 2008, federal funding for 2009 is CRITICAL to the continuation of the vaccine project.
Please do all you can to generate phone calls, faxes, emails, letters to Jim Nussle, Director of the Office of Management and Budget, and to congressional representatives all over the United States!
Nussle's mailing address is included on the attached letter. The organizational chart on the OMB website lists the following for Nussle: phone 202-395-4840 -- FAX 202-395-3888
To ascertain the congressional representative for an area, you can use http://www.house.gov/ Just enter a zip code for the area in question.
Contact from individuals, from a business or corporation and from groups such as Service Clubs, Professional Organizations, Governmental entities, Chambers of Commerce, churches, etc. can be VERY influential IF IT IS FROM CONSTITUENTS of the congressman being contacted.
To get individuals and groups to make these contacts, you must ask, so please do!
As always, valleyfeversurvivor.com wants vaccine research to be fully funded. This is an opportunity where everyone reading this and sending out their own letter, e-mail or fax can make a difference.
To help get you started, we already prepared two letters for your convenience. This letter is for your U.S. Congressperson so you can ask him or her to support the appropriation of funding from Director Nussle. The second letter can be used to contact Director Nussle himself to request the appropriation of funding. Both are important and necessary.
Everyone reading this should participate no matter which state you live in. Please follow these links and personalize the letters. These letters must be received on or before the first week of February. Preferably they should be done as soon as possible so send out your own letters ASAP! Get your family, friends, and co-workers involved so they will send their own letters too. What you do today may decide if any money is appropriated for the vaccine research for 2009. Thank you in advance for helping to make the appropriation of money for the vaccine project successful.
December 2007: THE VACCINE PROJECT URGENTLY NEEDS YOUR HELP NOW!
We were contacted today by the Valley Fever Vaccine Project and they need your help! In order for them to receive money for the VF vaccine work that was authorized in the Tax Relief and Health Care Act of 2006, an appropriation must be made.
This is what you need to do: Download the Microsoft Word document (in .doc format) the Vaccine Project sent us so you can view it and send it to your US Senate and Congressional representatives. Let them know that you want them to contact the Office of Congressman Kevin McCarthy at 202-225-2915 to tell him they will sign on to the funding request letter for the Valley Fever Vaccine Project.
Unfortunately, even though this information just came in, action must be taken very quickly. We were originally told these messages should be sent by the 14th but congress will remain in session for an additional week so the deadline has been extended to Wednesday, December 19th. If you don't know how to contact your elected officials, please visit www.govspot.com to learn how.
Also, for those who would like to donate to the Valley Fever Vaccine Project, Dr. Cole's University of Texas Vaccine Project, and other worthwhile Valley Fever projects, please visit our Links and Contributions page.
November 2007: The latest statistics for Valley Fever cases in the top two endemic areas through the beginning of November 2007:
Arizona had nearly 4000 provisional cases reported
California had nearly 2200 provisional cases reported
Since 2% or less of Valley Fever cases are estimated ever to be reported, that leaves 98% either misdiagnosed or never diagnosed. Therefore, the estimated total numbers of infections caused by Valley Fever through early November 2007 are below:
These are frightening numbers and can not be ignored. This disease is destroying lives, families, and the future of our children. Please help support Valley Fever research by donating what you can afford. Our links page has information about the organizations conducting Valley Fever research and how you can donate to them. Thank You.
The Valley Fever Survivor Reference Guide
This long requested and anticipated guide will finally be available for sale in e-book format very soon and as a printed book shortly thereafter. It has everything a patient, family member, visitor, student, animal lover, veterinarian and doctor should read. The guide is the first and only book of its kind.
With information about symptoms, drugs, treatment, testing, and more, people with Valley Fever (or with pets that have Valley Fever) finally have an all-in-one resource. It has specific sections to include stories by Valley Fever survivors, tales of pets with the disease, and a chapter to share with family members who do not seem to understand the seriousness of Valley Fever. It even has an entire chapter devoted to boosting your immune system and health improvements you can make beyond your doctor's care. This book has been designed with general audiences in mind so it is easy to read and understand, no matter how complex the medical issues are.
As a bonus, this book contains the ultimate Valley Fever glossary, including over 320 definitions to explain the jargon used in medical reports and by your physician. No longer will patients be kept in the dark about what is happening to them.
All those who donated $50 or more to Dr. Cole's Valley Fever vaccine work (as a part of our promotion for the September benefit) will receive their free copy within the next few weeks.
October 2007: Due to the benefit in September and a large amount of behind the scenes work at Valley Fever Survivor, we have been unable to respond to our backlog of emails from September and this month. These delays will continue as we conclude work on the Valley Fever Survivor Quick Guide [Official title: Valley Fever Epidemic]. Thank you for your patience.
However, we have updated the web site with a new Frequently Asked Question:
My titers have recently become lower, but my Valley Fever symptoms feel worse. How is this possible and what could this mean?
While a lower number on the Valley Fever complement fixation titer often means that the patient's symptoms are improving, the link is not absolute. This is because titers test for antibodies against Valley Fever, and while antibodies are useful in blood tests for doctors to find, they are actually useless when fighting the disease. It is white blood cells that fight Valley Fever spherules.
A decreased antibody response could be due to A) an immune system problem, B) the fact that a decrease in antibody response doesn't necessarily have anything to do with the course of the disease (VF may actually be getting worse), or C) a medical error during testing or transportation of test materials.
Remember that antifungal drugs' side effects can cause many symptoms that are similar to Valley Fever. It may even be that a drug has stopped the Valley Fever symptoms but is creating its own symptoms.
Please read our Frequently Asked Questions to learn more information that may be helpful to you.
September Update: Valley Fever Survivor wants to especially thank the Valley Fever Survivor Phoenix/Glendale Support Group Directors, Linda Evins and Beverly Loebenstein for all their hard work and dedication to making the VFS Vaccine Benefit a success. Everyone who came enjoyed themselves and learned a lot. We also want to thank their families for all their help and support, plus other volunteers. A special thanks to Chris Papadakis and Megan Parker. This event would not have been possible without all their help and support.
We also want to give a special thanks to Dr. Cole for coming to Arizona and giving an outstanding presentation. It was also our pleasure to have Dr. Rundbaken there who gave an enlightening presentation and answered questions from the audience.
For all those that have sent us their $50.00 checks to UTSA to receive a free e-book copy of our new VFS Quick Guide Valley Fever Epidemic, please be patient. The release has been slightly delayed due to the long hours and days spent working on the event.
We have also extended the deadline for the free e-book offer for $50.00 or higher donations to UTSA until September 30th. With hope others will still consider donating to this worthy cause.
Thank you to all those who came and all those who sent checks in support of Dr. Cole's Vaccine Research.
September 2007: The Valley Fever Survivor Benefit for the Vaccine and Cure is Saturday, September 15, 2007 at Glendale High School. Be sure to read our updates from August and July for full details! We are also extending the opportunity to receive our upcoming e-book version of the Valley Fever Survivor Quick Guide [Official title: Valley Fever Epidemic] to September 30, 2007 as a free gift for a $50 or higher donation to Dr. Cole's research.
Thank you to all our sponsors! The Arizona Diamondbacks, Speedy Pawn, Lobenhaus Bed & Breakfast & Vineyards, Dakis Contracting, Inc., Harrah's in Laughlin, Nevada, The Phoenix Coyotes, Vision Waste And Recycling, AAA, PVD Contracting, Arizona Cardinals Football Club, Pride Restaurant Group, Inc. Burger King Restaurants, Fast Signs (On Glendale Ave.), American Golf Corp., Glen Lakes Golf Course, Vantastic Donuts, Bagels & Sandwiches, Costco, Sam's Club, Lamar's Donuts, Brothers Family Restaurant, Luna Pizza, Food City, AJ's Fine Foods, Subway, Dominos, Sardella's Pizza, Wing Stop, JB's Restaurant and Glendale High School.
The prizes donated for the raffle at our benefit are: Diamond ring (Speedy Pawn), diamond bracelet (Speedy Pawn), four 9-hole rounds of golf (Glen Lakes Golf Course), Diamondbacks baseball signed by Brandon Lyon (Arizona Diamondbacks), Coyote hockey puck signed by Curtis Joseph (Phoenix Coyotes), 2 box seats for the Sept 17, 2007 Diamondbacks game (Dakis Contracting, Inc.), Cardinals white T-shirt x-lg and brown Cardinals cap (Arizona Cardinals Football Club), Harrah's vacation package (Harrah's in Laughlin, Nevada), Lobenhaus Bed & Breakfast & Vineyard vacation package (Lobenhaus in Carlton, Oregon), 1 year AAA membership (AAA), epoxy floor surfacing for up to a 3 car garage (PVD Contracting), gift basket (AJ Fine Foods).
For only $40, you can attend, have four raffle tickets, food, entertainment, have an opportunity to listen to one of the world's leading VF vaccine researchers, and have an opportunity to win some the valuable items donated by our sponsors! Don't forget you can buy as many raffle tickets as you like. Do so in advance by contacting Linda Evins at email@example.com.
August Update: There were nearly 5000 VF cases reported to the CDC for the 1st seven months of the year. Since it has been estimated that only two percent of VF infections are diagnosed and reported accurately, it means approximately 250,000 people were infected with Valley Fever so far in 2007. We still have five more months to go and the Valley Fever epidemic continues. Please read the information below to find out how you can help donate to Dr. Cole's Valley Fever research.
We hope you can attend Valley Fever Survivor's upcoming Valley Fever Research Benefit on September 15th, 2007 in Glendale, Arizona. You will have a rare chance to hear a presentation by Dr. Cole about his VF vaccine research. Please click here to see a copy of our flyer (be sure to look at the spectacular items available in our raffle!) and click here to see Dr. Cole's bio. You may pay the admission fee at the door or print the registration form here and send a check by mail. 100% of all profits and donations go directly to research.
We thank all those who have already sent $50 and higher donations to receive free e-book copies of our upcoming Valley Fever Quick Guide (Valley Fever Epidemic).
Even if you are unable to attend or unable to send $50 in donations, a check of any amount to the University of Texas at San Antonio (UTSA) for Dr. Cole's important work would be welcomed. The UTSA can receive tax deductible donations under Section 170 of the IRS Code. Checks should be made payable to UTSA. Donations by check should indicate that it is for "Dr. Cole's VF vaccine research" in the memo area of the check.
For current information on how to donate to these medical projects, visit our Links and Contributions" page.
Together we can make a difference and end the suffering caused by Valley Fever with a vaccine and a cure.
July Update: Exciting Announcement
On September 15, 2007, Valley Fever Survivor and our Phoenix/Glendale VFS Support Group will be holding a fundraising benefit for Valley Fever vaccine research. Stay tuned for more information on how you can attend the event in Glendale, Arizona and how you can help.
If you feel you can offer a monetary donation as well that also would be fantastic. We have chosen to hold our benefit for one of the world's leading Valley Fever vaccine researchers. All profits and donations will go to Dr. Garry Cole's VF vaccine research, and we are honored to have him speaking at our event as well.
Early testing has shown Dr. Cole's vaccine project to have a 100% success rate in mice. There may be therapeutic benefits to this vaccine in patients that currently have Valley Fever, and it may ultimately be useful as a cure as well. With the development of this vaccine, we can potentially make Valley Fever a thing of the past.
To read information about Dr. Cole and his work click here.
Dr. Cole is located at the University of Texas at San Antonio (UTSA). The UTSA can receive tax deductible donations under Section 170 of the IRS Code. Checks should be made payable to UTSA. Donations by check should indicate that it is for "Dr. Cole's VF vaccine research" in the memo area of the check. Please mail checks to:
For current information on how to donate to VF medical projects, visit our Links and Contributions" page.
All checks will be routed to the UTSA after the benefit. Every person who donates will receive a letter from UTSA that will act as a receipt for tax purposes.
For years, people have been asking us for a straightforward, easy to understand book for Valley Fever patients and their families. It is our pleasure to inform you that we have done just that.
As a special way to raise funds for VF research, Valley Fever Survivor will give a free copy of our new VFS Quick Guide (in e-book format for your computer) to the first 100 people who donate a $50.00 or higher check for the benefit by mail. All proceeds will go to research. The book's title will be Valley Fever Epidemic. Those of you who donate in this manner will be the first to receive this e-book. Please remember that this offer is good only for your donation of $50.00 or more to UTSA for Dr. Cole's outstanding VF vaccine research and sent to VFS no later than September 30, 2007. We look forward to your participation. We know you will find Valley Fever Epidemic extremely useful.
Valley Fever Epidemic packs all the essential information about Valley Fever treatment and living with VF in a well organized and easy to read book. It can help a patient with VF, it is enlightening for family, friends and co-workers of someone with VF, and will even help doctors who have not conducted in-depth research into the disease. It has a comprehensive glossary that will help you understand the jargon you may find in your medical paperwork. It also includes personal stories and lessons learned from the thousands of people who have contacted Valley Fever Survivor, as well as scientific research from peer-reviewed medical documents. The e-book will be sent out to the email address of your choosing when it becomes available.
This e-book is NOT a printed version of Valley Fever Epidemic but an electronic document in PDF format that can be viewed on a computer. You must send us an email address that receives attachments (this email address must be typed or written clearly on a separate letter that is sent with your check) in order to receive the free e-book. You may also want to include your phone number in case we have any questions.
The printed version of the book will not be available for sale until a later date, and a version of the e-book will also be made available for sale to those who did not donate. Pricing of both versions will soon be determined. Our long-time readers know we have also been working on a comprehensive book that is designed to address all the medical, social, and military aspects of Valley Fever. That book will be for the entire nation to read, but we felt it was important to help the people who have the disease with Valley Fever Epidemic first.
Don't miss out on this chance to receive our e-book. Your $50.00 or higher donation will be very much appreciated, and if this vaccine is successful it can save countless people from Valley Fever. We look forward to hearing from many of you.
June 2007 In the news:
With Tuberculosis (TB) making national headlines lately, we thought it would be worthwhile to show a comparison between TB and Valley Fever (VF). Note that the following information refers even to both the serious TB strain that has been in recent news as well as common TB strains.
Since we had a chart with the increase of Valley Fever in Arizona in the May update, we decided to include a chart of California, featuring the five counties that reported the highest number of VF infections over the past four years.
Since the total number of reported cases is estimated to be only 2% of the infections that occur overall, the total for 2006 would be estimated at over 156,000 cocci infections. Notice that the state's total had nearly doubled, that Kings County's annual caseload increased by nearly 300%, and that Fresno's annual caseload increased by nearly 800% over the past four years!
May 18 Update:
Each news segment was two and a half minutes long. Obviously there is a limited amount of information that can be placed into a segment of that kind. If either station had an opportunity to use the hour of interview time they had spent with us, more information could have been included.
Some of the information we provided was that Coccidioides sp. is a biological agent, regulated by two antiterrorism laws. Most people are unaware of that fact. We noted that more healthy people actually contract Valley Fever than immunocompromised people, that even the 50% of infected persons who are initially asymptomatic are not safe due to the possibility of activation, and that over 15 trillion spores could fit into one cubic inch. We had also described how it affects the military and homeland security, could affect every part of the human body, and how pregnant women and their unborn children could suffer from Valley Fever.
Please read our Frequently Asked Questions, our Facts and Commentary, our Symptoms page, and our page of Common Misconceptions About Valley Fever to see some of the information that could have been aired had the media been able to use some or all of our interview footage. Perhaps future segments can be made longer to incorporate this information.
You can watch the video links here.
April Update: We all know that Valley Fever is difficult to diagnose and treat. Interestingly, it seems that many other ailments have the same problem. In fact, one online article notes that of the 90,000 annual hospital deaths due to physician or hospital staff error, 15% of those occur because the wrong diagnosis was made. In To Err Is Human and other articles on hospital mistakes, the estimate of deaths was closer to 100,000.
With Valley Fever, it is easy to suspect the misdiagnosis problem is even worse. Blood tests and sometimes biopsies can appear negative while patients are infected. Tests can be negative even in severe cases when Valley Fever was only discovered at autopsy to be the cause of death.
There is also a profound lack of understanding among medical professionals, acknowledged by the state of Arizona when $50,000 in emergency funds were released simply to train doctors about Valley Fever. Two-thirds of all cases occur in Arizona and the doctors already should have been familiar with the disease, but our questionnaire respondents often indicate that is not the case.
This problem can also be seen among doctors who consider alternative approaches to treatment, such as Lance Drehrer, PhD, known as "Doctor Fitness." In an article about the effects of nutrition on disease, he wrote:
I have seen people cured from cancer and have experienced the same personally when dealing with my own health issue of disseminated Valley Fever. My doctor's solution [was to use] drugs! My solution [was] diet, supplements and [to] change my pH!
My way has worked better. My valley fever is non-detectable. Like I never had it.
We agree that proper nutrition is important for everyone, and especially for people with an illness. It can mean the difference between an immune system capable of fighting a disease or failing to do so. However it is important to note that some VF cases can appear to resolve without medication and titers commonly disappear after a few months or years when it goes dormant. There is always a possibility of relapse because the Coccidioides sp. can not be completely killed or removed, so everyone infected should do what they can to stay healthy in every way possible.
Whether following the advice from doctors in a hospital or for alternative treatments, one should be wary of misdiagnosis and misinformation. Please read the linked article for suggestions on how to be better prepared for medical appointments.
Also, read Valley Fever Survivor's March updates if you have not already done so. They will show you how to take political action for the vaccine and cure to Valley Fever.
March Updates: Your help is needed now for nikkomycin Z and the vaccine!
This is the first time in Arizona's history that a governor has called for funding for Valley Fever research. In the last ten years, nearly every annual case total was the worst VF epidemic in history until the next year proved even worse. After Arizona's 2006 VF case reports were once again the worst VF epidemic the nation had yet seen, this time by nearly a 50% margin, action may finally be taken by the state to fight Valley Fever.
Gov. Janet Napolitano's executive budget proposal for 2008-09 includes action to support Valley Fever research. This budget provides a one-time increase of $1.8 million for Valley Fever research, most of which would be spent toward the research of nikkomycin Z, a possible Valley Fever cure.
Since the local legislators have not yet assembled their budget plans, it is up to every Arizona resident to call or email their state senator and state representative in their district immediately to show support for this provision. While this funding is not enough to bring the drug to completion, without this funding one could only expect further delays. These delays would potentially mean more lives lost and terrible suffering.
With over 1000 cases reported so far in Arizona in 2007 (representing 2% of 50,000 estimated VF infections in less than 3 months), this ongoing epidemic is far from over. Please visit this Arizona web page or http://www.govspot.com/state/az.htm to learn how to contact both your state senator and your state representative to let them know to keep this provision in their budget as well, and let them know you heard about it from ValleyFeverSurvivor.com. Note that these are not your U.S. House of Representative members and not U.S. Senators McCain and Kyl, but your local Arizona state government. If you do not contact your Arizona state senators and legislative representatives regarding this matter, the Arizona legislature may cut this possible funding out of the budget. You can also contact Arizona constituent services at (602) 542-1318 and ask who the legislators are in your district.
If you've never taken political action before, this is the time to make the difference. If you live in Arizona, contact your politicians immediately before their budgetary decisions are finalized which probably will be by April. You need to act now!
If you are not a constituent living in Arizona, you can help by contacting the representatives at the area where you or a family member or a friend had contracted Valley Fever. Call or e-mail as soon as possible and let them know how important it is to tourists and snowbirds that Arizona take action against the state's naturally occurring biohazard.
We hope we can count on the Valley Fever community to come through and take action to help secure the $1.8 million toward VF research in Arizona.
Thanks in advance for your support and help on this very important legislation.
Last year, federal grants were authorized that might allow up to $40 million dollars to be spent on Valley Fever vaccine work. While the grants themselves were authorized, there is still a need to appropriate money in order for those grants to be effective. California's Congressional Representative Kevin McCarthy is working on appropriating this funding, and this is where you can come in to help.
Part 1: Contact your congressional representatives.
If you live in Representative McCarthy's district, send him a letter of support. If you live elsewhere in California or any other state, please contact your district's congressional representative and tell them that they must back Representative McCarthy in his quest to obtain the appropriation of the money authorized for the Valley Fever vaccine. This sample paragraph below may be included in your letter or phone call to your representatives, personalized however appropriately:
Valley Fever (coccidioidomycosis) is a serious airborne disease epidemic that has multiplied in intensity. It starts because of a soil-borne fungus that lives in the desert southwest (especially Arizona and California) and can be blown into the air to be inhaled. It is a major national and international problem due to interstate and international travel, infecting hundreds of thousands of people each year. Valley Fever can cause lethal pneumonia, meningitis, and other conditions, or perhaps mimic flu symptoms, and sometimes not even show any symptoms at first, but could reactivate later in anyone who was infected. Since everyone needs to breathe, and the population traveling through and living in the Southwest is skyrocketing, the need for a vaccine for Valley Fever becomes greater with every breath.
If you need to find your representative's contact information, you can find it at http://www.govspot.com or http://www.house.gov
Part 2: Show support for Representative McCarthy
Please join California's Representative Kevin McCarthy and add your name to the letter requesting that the Appropriations Committee include $8 million in this coming year's budget (2008) of the full $40 million dollars authorized over the next 5 years for the grants to the Valley Fever Vaccine Project under the Tax Relief and Health Care Act of 2006. Without this appropriation, thousands more may be infected needlessly. Contact legislative assistant Ashley Campbell in McCarthy's office, (202) 225-2915.
By taking both actions, we can let Representative McCarthy have a larger list of supporters to add weight to his request, and convince our representatives from other states to provide support for him. Please take action as soon as possible.
March 2007 update: A Valley Fever fundraiser in Arizona
Janice Arenofsky and Shirley Cole have set up a very special fundraiser in Arizona to assist funding the development of nikkomycin Z, a drug that may be a cure for Valley Fever. The fundraiser information is below:
Event hosted and underwritten by Bashas' and AJ's Fine Foods.
Friday, April 6 at 6:00pm.
$40.00 per person
Zelma Basha Salmari Gallery of Western and Native American Art
22402 S. Basha Road
There will be cocktails, hors d'oeurves, live music and raffles. All proceeds will benefit the University of Arizona Foundation's work on nikkomycin Z. Your donations are tax deductible. For more information, contact Shirley Cole at (480) 948-0657 or Janice Arenofsky at (480) 831-9079.
March 2007: There are many survivors who contact us and mention that their medication is not having any effect on their Valley Fever symptoms. Although Coccidioides sp. is the most virulent fungus known to man and regulated by two antiterrorism laws, there may be another reason some drugs are ineffective: Sometimes the drug mentioned on the label isn't the drug in the pill.
Tom Zoellner's Parade article on counterfeit drugs has some information that many who use medication for Valley Fever will find important.
"The World Health Organization estimates that up to 10 percent of the medications sold globally are actually counterfeit. The number in the United States is much lower - experts peg it at 1 percent - but the practice is growing as dealers of illicit street drugs like cocaine and Ecstasy discover there are more profits and less risks in selling phony tablets of [consumer] drugs..."
Some of these are made with useless filler in informal labs and in foreign countries. "But not every counterfeit drug is cooked up in an illicit lab. Some unscrupulous suppliers have been known to boost their profits by 'uplabeling' - for example, passing off a 10mg dose of a drug as 40mg. Expiration dates may be altered too. Experts say the vulnerabilities in the supply chain also can be traced to secondary drug wholesalers, who face pressure to keep costs low and may not be inclined to scrutinize the source of their purchase. Where the drug changes hands several times, that's where you have the problem, says one industry expert. The bogus drugs go from a wholesaler's warehouse to a retail pharmacy and into a consumer's medicine cabinet."
The Food and Drug administration recommends the following to lessen the risk of receiving counterfeit drugs: "Consumers can protect themselves from the risks associated with counterfeit drugs by purchasing all prescription and over-the-counter medications from U.S. state licensed pharmacies. Consumers must be vigilant when examining their personal medications, paying attention to the presence of altered or unsealed containers or changes in the packaging of the product. Differences in the physical appearance of the product, taste, and side effects experienced should alert the patient to contact their physician, pharmacist, or other healthcare professional who is providing treatment."
Ask your doctor what the drug is supposed to look like ahead of time and click here for more FDA information about counterfeit drugs.
February 2007: Every year the CDC warns through the national media outlets about West Nile Virus. In 2002 they learned that it can be transmitted through blood transfusions. It prompted rapid implementation of nationwide screening of all blood donations by 2003. This screening has prevented approximately 1400 potentially infectious blood donations from reaching the public. This screening does not catch all West Nile Virus infected blood donations but it helps a great deal. In 2006 a kidney transplant was performed but the patient contracted West Nile Virus from the contaminated organ.
How does this relate to Valley Fever? The CDC does not warn about Valley Fever through the national media outlets, i.e. ABC, CBS, NBC, FOX News, MSNBC, CNN, or other television networks, much less radio stations. Virtually every news station and newspaper across the nation had top stories or front page features about West Nile, SARS, and other diseases the CDC has seen fit to address publicly. How many front page newspaper articles have you seen over the past 50 years regarding the ongoing epidemic of Valley Fever (coccidioidomycosis)? Have you ever seen pamphlets, flyers, billboards, tourism bureau mailings, vacation advertisements, university recruitment literature, or other informational documents mention the existence of Valley Fever, much less the seriousness of it? This is a "local secret" that must get out to the entire nation and abroad. After all, in 2006 there are estimated to be over 409,000 new Valley Fever infections contracted.
Valley Fever has been repeatedly transmitted through organ transplants, in some cases leading to death. No one to date has been willing to check the blood supply. Valley Fever disseminates through the bloodstream, sometimes unnoticed, and therefore potentially could lead to infected blood donations. We don't know since no one is willing to check for it in spite of our requests.
Please consider writing to the CDC and ask them why they won't test blood donations for Coccidioides sp. They are supposed to protect your health, but so far protection against Valley Fever does not appear to be on their agenda. This just may save a loved one from severe suffering or death. Please check our page of Valley Fever Action Letters to see our CDC letters. We hope this prompts you to write a letter of your own.
Julie Gerberding, MD, MPH
Centers for Disease Control and Prevention
1600 Clifton Road, NE
Atlanta, Georgia 30333
You can also call the CDC at 1-800-311-3435.
January 2007: Unfortunately the final numbers of reported Valley Fever cases are not available for 2006, although we will provide the provisional numbers. In Arizona, the number of reported cases to date is 5,493 for 2006. As we have stated in previous updates, only 2% of the total number of VF infections are estimated to be diagnosed accurately. That means that over 270,000 people are estimated to have been infected with VF in Arizona in 2006. The 5,493 cases reported from Arizona is an increase of 45% over the previous year's 3,778 reported cases. Presently California has provisionally reported 2,525 cases of Valley Fever for 2006. The provisional total number of nationally reported Valley Fever cases in 2006 is 8,184. The national number of VF infections for 2006 is therefore estimated to be over 409,000 new infections.
This incurable parasitic fungal disease epidemic is still kept a "local secret" from tourists. Many residents are also unaware of coccidioidomycosis and the true consequences of what could happen if they were to inhale a Coccidioides sp. spore.
Much more needs to be done to make sure warnings and factual information are given to seniors, tourists, students, businesses and current and potential residents of these highly endemic zones. We all need to do our part to ensure money goes to the vaccine project and a cure. It's time for the states to take responsibility for their endemic disease and ante up the funds to make Valley Fever a thing of the past.
The 409,000 annual infection estimate more than doubles the number of infections necessary for "orphan disease" status. Further, most states do not have to report cases of coccidioidomycosis and even in the endemic states that are supposed to, patients frequently state that their doctors admit they do not report VF cases. Therefore, nationally, the toll it takes on American and international travelers alike is almost entirely left out of the equation.
December Update: Even though the bill to promote the Valley Fever Vaccine (HR5416) was not passed, $40 million in grants for VF vaccine funding were attached to the Tax Relief and Health Care Act of 2006. This bill passed through the House of Representatives on December 8th and passed through the Senate on the 9th. This was an incredible 11th hour move to promote Valley Fever funding and the bill was signed into law.
Our thanks go out to everyone who participated in our petition and contacted your own representatives and senators. We feel that through all our action and hard work, we may have made a big difference in the course of Valley Fever funding.
Since no money has specifically been appropriated to fund the grants for Valley Fever, and grants are not always awarded, this is not a perfect arrangement. There is still a long road ahead and we hope you will continue to work with us at Valley Fever Survivor to ensure the vaccine is completed and adequate funding is brought to the cure.
December 2006: It is often helpful for Valley Fever Survivors to know that they are not alone, and that as bad and chronic as this disease can be that it is possible to live one's life. The following email and picture says more than we ever could:
Thank you as always for the updates to the website. And thank you for mentioning the servicemen and women in the Middle East.
Last November I contracted the disseminated form of the disease. I ended up in the hospital for almost a month with pneumonia and meningitis, and then was bed-ridden for a couple of months. I can't even begin to tell you how many pain pills the doctors had me on. The pain this summer was so bad I ended up on methadone. I saw myself quickly turning to pills until one day I just decided to stop taking them. After a couple of months I eventually started to feel better. Today I am serving our country in Iraq. I still every once in a while get some headaches and back pain , however I usually just gut my way through those times.
I wanted to pass on my story to those persons newly infected with the disease. I know there were times when I really felt pretty depressed. To go from being a marathon runner to basically an invalid was tough. The best advice I can give to anyone with the disease is to keep on fighting and never give up hope. Your website and the information I gleaned from it has been a tremendous help. Thank you for giving me hope. Thank you for doing what you do to fight this disease.
Please keep up the good fight. I'll do the same.
LT, JAGC, U.S. Navy
It is important to remind our soldiers that we are grateful for their sacrifices, especially at Christmas time when they are away from their families. As noted in last month's update, please use the free card mailing service at http://www.letssaythanks.com/ as an unexpected reminder of love and support this month. Our servicemen and women in Iraq and around the world need our support. All of us at Valley Fever Survivor hope all of America's defenders will be able to have a Merry Christmas and pray you will be able to stay safe. God bless America.
In addition to Theron's letter, we have an update for VF statistics. As of November 25th, there were 7,315 Valley Fever cases reported to the CDC for 2006. For the same period in 2005 there were only 4,179.
November 2006: As of November 4th, 2006 there were 6829 Valley Fever cases. In 2005 for the same period there were only 3717. Since it has been estimated in medical journals that only about 2% of the total number of Valley Fever infections are diagnosed, the estimated number of overall infections so far this year is over 341,000 people. Even without counting the last two months, 2006 already far exceeds any other year as the worst epidemic of this incurable disease. By state, this year's total infections-to-date are 160% of California's 2005 recorded Valley Fever victims and 198% of Arizona's 2005 recorded victims. This does not take into account the millions of visitors to endemic areas. This is a national and international problem affecting people from across the United States and abroad.
While Valley Fever is near many military bases and it is a military issue, this next part is not strictly Valley Fever related. Whatever your personal feelings are about war in Iraq, we all know that warfare is a difficult job and we want our soldiers to remember that they are in our hearts and prayers. The Xerox Corporation has set up the "Let's Say Thanks" service at http://www.letssaythanks.com/ so that you can send free cards to our servicemen and women. Just this simple act can do so much to brighten their days while they work to keep our nation strong. Please click here to send a message to one of our military personnel overseas. Thank you to Budster for this tip in the forums and VFS wants to thank all members of the United States Armed Forces, past and present, for their service. We are behind you 100% and we are blessed to live in the greatest nation on Earth. God bless America.
Important October Update: Thank you to everyone who had participated in the petition and had written your own state’s US Senators and US House of Representatives members. We have new information from Representative Thomas’ office.
Unfortunately, the bill is still in committee. Congressman Thomas’ office said that the best way we can help is to:
1) Contact Congressman Joe Barton, the chairman of the House Committee on Energy and Commerce. Let him know that there is nationwide support for HR 5416, the bill that will allow federal funding for the Valley Fever vaccine. Since many of our readers have requested ways to take action electronically, you will be glad to know he can be reached on the web. Chairman Barton’s contact information is available at http://energycommerce.house.gov/feedback.htm
2) You should also write your congressional representatives and ask them to contact Chairman Barton himself and request that he bring HR 5416 out of the committee and to a vote. You can learn how to contact your own representatives at www.govspot.com
Consider these as actions you must take as soon as possible or no later than Friday, November 3rd. Remember that HR 5416 will expire when the new congressional representatives who are elected or re-elected convene for the next congressional session. Further, Representative Thomas is retiring so there is no guarantee that a similar bill will be introduced next year. If everyone writes as soon as possible, then perhaps the “lame duck” November congress can produce something truly important by putting the federal Valley Fever vaccine funding bill HR 5416 to a vote.
October 2006: The Valley Fever Survivor links page has been updated to include a link to the Pulling For Denise Blog. This blog was established due to Denise Williams' severe Valley Fever infection, and it may help others to learn from her experiences.
We have not yet received a reply to the efforts of our petition but will update our front page when we do.
September 2006: Thank you to everyone who participated in our petition drive for the vaccine. Along with the 1633 names that our petitioners gathered from 23 states, we also sent an information packet and a letter to show nationwide support for HR 5416. You can read our letter to Representative Thomas here and also read a letter included in a large package of Arizona petitioners here. They are also linked from our page of Valley Fever Action Letters.
We will update this page with information and any replies that we will hopefully receive. Our work and your work is not done until there is a vaccine and cure, so it is also up to you to contact your congressional representatives to make sure they will support HR 5416 and help fight Valley Fever. If you do not have their contact information, find it at www.govspot.com.
Also, please read our important warning page about flowers of sulfur, the supposed "Valley Fever Cure."
August 2006: The Vaccine Petition
By popular request the latest date you can mail the petitions to us has been extended to September 1st. Get as many signatures as you can and contact firstname.lastname@example.org so you can mail them and have them postmarked no later than September 1st.
Representative Thomas' Valley Fever Vaccine Development Act (HR 5416) is not doing very well. On June 5th it was sent back to committee and has not returned to the floor for debate.
In congress, being "sent back to committee" is a code for "no one else wants to vote on the bill." The current congressional session will adjourn on October 6th so we need to act now.
The only way to save this bill is to take action of our own. Please download and print this petition form. [this link is no longer active] If politicians do not think there is support for this bill, they are not likely to take action. Show them how much support there is! Get as many signatories to the petition as possible, and please enlist the help of your families, friends, and co-workers. It is important to remember that this form must be filled out correctly or the signatures can not be counted. This petition can be done by people who live in any state. We just need to show support for this bill.
Email us at email@example.com when you have collected as many signatures as possible by August 25th (now September 1st). We will provide a mailing address for you to send the petition forms to us, and they must arrive no later than September 5th. Once we receive all the petitions, we will send them together to Representative Thomas so he can show his congressional colleagues that the Valley Fever community is willing to speak with a strong, united voice. Since the bill will expire at the October 6th congressional adjournment, it is critically important that we give Representative Thomas and his co-signers time to act.
We hope we can count on your help. This is one of the most important steps you can take to make a difference.
July 2006: For decades, Arizona has not used state funding to fight their local biohazard, even when California contributed to the Valley Fever Americas Foundation. Finally, Governor Janet Napolitano will use $50,000 of health crisis funds to educate local doctors about the symptoms of Valley Fever and its treatment. Tragically, Arizona still will not contribute to the vaccine and cure projects.
VFS has been pushing Arizona for years to take at least some kind of action, and this is a small step. Many readers who contacted us with links to articles about the funding told us they felt we had a hand in it since we have been a thorn in the sides of Arizona's politicians. When we have over 800,000 hits to our site in only half a year and are visited by dozens of countries every month, they are starting to take notice.
It shouldn't take $50,000 to give doctors information that has been freely available on our web site for years and inexpensively purchased in peer-reviewed journals. Even if they flew all the top VF doctors into Arizona and held major seminars, I sincerely doubt it would cost $50,000. We would hope the top VF doctors would volunteer their time to train doctors so this money could be better spent on research.
Hopefully the many doctors who currently underestimate or ignore the dangers of Valley Fever will be trained to react to the ongoing health crisis. This funding will not be used to warn tourists or residents about this incurable disease and its consequences. Reported infections from this year indicate that Arizona is experiencing the worst Valley Fever epidemic in recorded history. Perhaps with increased attention to the ongoing epidemic, funding for the vaccine and cure will follow.
Most of Arizona's statistics for June have been unavailable. However, from January through May and the first part of June, the total number of reported Valley Fever cases for 2006 is 2,753. Remember that only approximately 2% of overall infections are diagnosed and that this reporting doesn't even include infections from Phoenix's dangerous June dust storm. California's VF reporting has risen as well, but is nothing compared to the ongoing Valley Fever nightmare from Arizona's diagnosed and undiagnosed cases.
June 2006: For years we have been asked if there are any support groups for Valley Fever. We have now started forming Valley Fever Survivor Support Groups. Our first support group is the Phoenix/Glendale Chapter located in Arizona. Please read our information here if you are interested in becoming a member or starting a VFS Support Group in your area.
Important action you can take now!
Representative William Thomas from California has proposed the Valley Fever Vaccine Development Act (HR 5416) which could provide up to $45 million for vaccine research.
We encourage our readers to go to their local city councils and county supervisors to ask that these politicians fax or mail their own letters of support for this legislation. Approaching employers for letters of support would also be beneficial, so please do this as well.
Support letters are most powerful if they are unique, so no sample letter is provided. The address is simply: The Honorable William Thomas, Room 2208 Rayburn House Office Building, Washington, DC. The letter need not be complex, can be brief, and should include:
Please fax letters to Congressman Thomas at 202-225-8798 and fax a copy to the Valley Fever Vaccine Project of the Americas, A Rotary District 5240 Project at 661-746-4746.
We thank Sandra Larson from the Valley Fever Americas Foundation for giving us this important information. We hope all of our readers will participate and send their letters as soon as possible.
May 2006: What the doctors either don't know or won't tell you about Valley Fever
Get sick, stressed out, have surgery, or even experience an accidental blunt trauma injury and it could activate cocci.
Valley Fever can wax and wane forever. Just when you think you are better it can make you "fall off the cliff" again.
You could be fine for many years and never shows signs of illness, then suddenly be brought to your knees by debilitating pain, loss of organs and other disastrous consequences.
It can activate for seemingly no reason at all.
It is an incurable disease caused by the most virulent fungal parasite known to man and kept a "local secret."
If you are a man it could affect your testicles and prostate. These infections are often misdiagnosed as cancer. Unfortunately, men have had to have these organs removed due to Valley Fever.
If you are a woman, your doctor may recommend against having children. Valley Fever cases can be more severe in pregnant women, can sometimes affect the fetus, and some antifungal medication necessary to protect the mother's life could cause birth defects.
If you need to take antibiotics for a bacterial infection, it may be dangerous to take these drugs for fear of activating or stimulating cocci to multiply. If you do need antibacterial antibiotics be sure to talk to your doctor about giving you antifungals in conjunction with it.
It can be dangerous to use steroids since they suppress the immune system allowing cocci to have freer rein.
A titer of 1:8 or higher is considered serious. A titer of 1:16 or above usually means disseminated cocci. A high titer means your body is reacting to the Coccidioides and the disease may be very active even if you do not feel symptoms yet. Please do not let any doctor tell you that it is okay to have a high titer since you are feeling okay. We are aware that VF patients have been told this when there is nothing further that their doctor can do to lower the cocci population in the body. There are people that have had their spinal column destroyed by cocci and they weren't even aware of any problem until their spine collapsed underneath them one day.
It appears most doctors do not understand this disease, nor have they studied it in depth. Too many doctors believe the repeated old information, outdated information, and misinformation that has been around for too many years. Ask your doctor to visit our web site or to contact us for accurate information about this disease with citations from peer-reviewed medical journals.
When a doctor tells you that you need a spinal tap to see how your cocci is doing, be sure to find out if your doctor is conducting any research in that field which might call for a spinal tap sooner than you really need one. This procedure can cause horrible pain and scarring, causing more problems. Don't be afraid to ask questions and be your own advocate when the doctor asks you to do anything.
Remember that patients have a right to see and maintain copies of their medical records, including lab tests and x-rays. Although there may be a charge for copying fees, a doctor can not legally deny a patient's request to see them. This may be particularly valuable for Valley Fever lung lesions. If a suspected lung cancer malignancy is compared with a cocci x-ray and revealed to be the same lesion, an unnecessary lung surgery or biopsy may be averted. Too many people have lost parts of their lung in surgery for lung cancer only to find that it was truly Valley Fever and did not need an operation.
Your health safety net is, unfortunately, permanently gone once you contract Valley Fever. An endemic area's newspaper editorial reminded its readers of this:
Don’t be fooled by patients who only suffer a few weeks of flu-like symptoms. The disease can stop at the lungs with mild effects. But it also can cause permanent and severe pulmonary problems. When disseminated throughout the body, valley fever can cause extreme pain, stiffness, mental debility, paralysis and death. (Bakersfield Californian editorial, 5-08-05)
April 2006: VFS Health Alert!
Valley Fever (coccidioidomycosis) is at epidemic proportions in Arizona. There have been 1,515 reported cases in the first 11 weeks of 2006 compared to 566 reported cases in Arizona for the same period in 2005. The numbers have nearly tripled. Since approximately 2% of Valley Fever infections are ever diagnosed, the estimated number of new VF infections in Arizona so far this year translates to 75,750.
In February 2003 the CDC declared a VF epidemic started in Arizona in 1998. There were only 347 cases reported for 2003 at the time of that declaration, and 1,551 cases for the entire year in 1998. To date, neither the CDC nor the Arizona State Health Department has alerted its residents, tourists, students, businesses or retirees about 2006's incredible increases of incidence of this incurable parasitic infection. 2006 has the worst VF infection rate ever recorded in the first 11 weeks of any year. This should not be kept a "local secret".
This agent of bioterrorism is regulated by two anti-terrorism laws. If it was considered an epidemic in 2003, shouldn't 1,515 cases prompt public health agencies to warn the entire nation? In eleven weeks, almost as many people were infected as during a previous "epidemic" year. This coccidioidomycosis epidemic makes it even more urgent that a vaccine and a cure be produced.
April 2006: Exciting Valley Fever Research
Dr. Garry Cole at the University of Texas at San Antonio is working on a new vaccine that may not only protect people from Valley Fever, but may even work as a cure in patients with Valley Fever. We highly recommend our readers donate to this important research. Learn how at our Contributions and Links page. Your help would be greatly appreciated.
We have also received many emails by VF patients asking whether their case might have disseminated, since a low titer can not rule out dissemination and ongoing symptoms may be suggestive of dissemination. A study shows that an erythrocyte sedimentation rate over 15 has been correlated with dissemination in 96% of disseminated cases studied. Therefore, although this blood test is not commonly done for this purpose, high erythrocyte sedimentation at the time of illness can be highly suggestive of disseminated Valley Fever. You may wish to ask your doctors to learn about this in the following medical journal article: Crum NF, Wallace MR. Laboratory Values Are Predictive of Disseminated Coccidioidomycosis. Infectious Diseases in Clinical Practice. 13(2):68-72, March 2005.
March 2006: What may keep cocci Active, make it Worse or let it Reactivate over time:
Please Note: cocci is frequently misdiagnosed as TB, Cancer and COPD, causing unnecessary surgeries and treatments that may also make the disease worse.
Cocci can infect anywhere such as the mouth, teeth, in your nose, skin, testicles, prostate, pericardium (lining of the heart), bones, joints, cause blindness and other optical lesions, and be just about anywhere inside or outside the human body.
We also would like to direct readers to our Frequently Asked Questions page. Our FAQ includes common questions about sulfur and has been updated, including increasingly common questions about Valley Fever and body heat.
February 2006: According to the CDC there were 814 reported cases of Valley Fever in the last month of 2005. Local reporting suggests the number is higher. The total number of reported VF cases for 2005 in the United States was 5145 according to the CDC. However, according to what the Arizona Health Department and the California Health Department tabulated, the cumulative number should be 5479. Since doctors estimate that only 2% of cases are actually diagnosed and reported (we understand that not all doctors report it even when required to) the overall number of estimated Valley Fever infections for 2005 is over 274,000 people. Reporting of the disease is mandatory in only a tiny number of states and most states do not report Valley Fever. The total number of reported cases for 2005 reached 3778 in Arizona and 1591 in California.
In 2005 the following ten counties were most severely struck by Valley Fever in California: Kern County (Bakersfield and surrounding areas) had the most reported cases, followed in descending order by LA, Tulare, Fresno, San Luis Obispo, Kings, Riverside, Orange, San Bernardino and Madera. There were 34 of 61 counties in California that reported VF cases.
The top ten counties for Valley Fever reporting during 2005 in Arizona were led by Maricopa County (Phoenix and surrounding areas). In descending order, the next counties were Pima (Tucson and surrounding areas), Pinal, Arizona County, Graham, La Paz, Mohave, Santa Cruz, Gila and Navajo. There were 15 out of 16 counties in Arizona that reported Valley Fever cases in 2005.
January 25, 2006: Although we have not yet received all the information we requested, we have been given the address and information on how to donate to the nikkomycin Z research project. It is now on the Contributions and Links page. We hope the rest of our nikkomycin Z questions will be answered soon and we will include the answers on our site when we receive them.
January 2006: Longtime readers of our web site have been aware of the drug nikkomycin Z for years. With the buzz of new research for the drug from the University of Arizona, we updated our Facts and Commentary page with fact #53 about nikkomycin Z. Since nikkomycin Z may be a cure and the research price tag may ultimately be $100 million, we have asked whether the project is presently accepting donations. We will update this announcement to inform you of how this important project can receive donations when we receive that information and other news about the nikkomycin Z project.
December 2005: From November 12th-19th, there were 234 new lab diagnosed and reported cases of Valley Fever. In only four weeks' time from October 15th-November 19th there were 722 new lab diagnosed reported cases of Valley Fever. Remember it is estimated that 2% of Valley Fever infections are actually diagnosed. This means 36,100 more victims are estimated to have been infected in those four weeks, and 213,150 people were infected up to that time in 2005. If this epidemic does not motivate the CDC, Arizona, California, and other federal and state health departments to warn the public about this incurable fungal parasite, what will?
Coccidioides is regulated as a weapon of bioterrorism, the most virulent fungus known to man, and occurs naturally in the Southwest. Valley fever will be dormant in half of the people who inhale it, but the risk of reactivation will be ever-present. Those who are sickened have a sword hanging over their heads, wondering when and if they will regain the health they enjoyed prior to Valley Fever, and if so, wondering whether the parasite will reactivate at a later date to debilitate or kill them.
We also updated our Arizona Poll for the events of November 2005. Please take the new Arizona 2005 Poll and let us know if you were there. We appreciate all of your time and effort in doing our surveys.
November 2005: As of October 22nd, there were 2504 laboratory-reported cases of Valley Fever during 2005 in Arizona and 1098 in California. From September 25 to October 8, 2005, there were 150 diagnosed cases in Arizona. From July 23 to August 20, 2005 the four-week total averaged 92 persons per week. Cumulatively, there were 3669 laboratory-confirmed Valley Fever cases in the United States up to October 22, 2005.
While these numbers are already an outrage, doctors estimate that approximately only 2% of individuals who contract the disease will actually have it diagnosed. This means there were approximately 183,500 Valley Fever infections so far for 2005. Many either had their symptoms untreated or mistreated if their disease was misdiagnosed. Others may not have been sickened but carry a biological time bomb within their lungs. Valley Fever could activate at any time to cause their death or major health problems. Unfortunately we will never know how many people died of Valley Fever this year due to misdiagnoses.
Residents and visitors alike deserve the truth about this incurable disease epidemic and not misinformation and minimization of the severity of this disease. Coccidioides is regulated as a biological weapon by two antiterrorism laws and politicians would be forced to resign if they ignored an attack of this scale. Their current inaction should not be tolerated simply because the Valley Fever epidemic might be due to natural circumstances.
The truth should be blasted on national television and across all media. When our book is released we plan to make that happen, but we need your help to pave the way. Once again we urge our readers to write their political representatives. Tell them to read our information and not to ignore or minimize this epidemic.
Please do not be silent about Valley Fever any longer. Your spouses, children, parents, brothers, sisters, and pets should have the right to grow up healthy and live life to the fullest rather than be struck down by Valley Fever. A vaccine and cure must be financed now and truthful warnings must go out to the public at large. Click here to take action.
November 8th update: From August 20th to October 29th, there were 1007 lab-diagnosed Valley Fever cases. With the estimate that only 2% of Valley Fever infections are diagnosed, there were over 50,000 infections in just those ten weeks.
October 2005: Governor Arnold Schwarzenegger declared August 2005 as Valley Fever Month in California. We hope everyone who was in California in August 2005 will please take this quick poll because it is very important to know how many people heard of it (or not) and what they learned from VF Month if they had heard of it. Thank you.
Although some medical information sources claim Valley Fever is a benign and rare illness, accurate data and correspondents to this web site sadly show this misperception to be profoundly false. We have chosen to share the excerpt below from a Valley Fever survivor because she clearly articulated the silent suffering many others with VF endure.
My condition has worsened to the point where they are going to remove my left lung. For the last 9 weeks I have had to be on Amphotericin IV's everyday. I am inoperable at this time due to the infection being so bad. I am told I will die with this...That the surgery will only buy me a little more time.
I will never see my grandsons grow up, I will never see them graduate or marry. I will never live a full life as I once did, never do all the fun things I used to do. Rather I must be happy with what is left of my life...make the best of what time I do have, forget all my hopes and dreams...just live each day as it comes.
I still cry about this, I still hurt in my heart over this. I am sorry for all those who become like me, and those who are way worse then me. I know I too at some point will be one of those way worse people and that is what I HAVE to look forward to. I would not wish this upon anyone.
You should demand that your local government and federal politicians support all the necessary funding for a vaccine and cure for coccidioidomycosis. Read our Action Letters page to see how you can get started. Be proactive!
September 2005: Our Frequently Asked Questions page has been revised and many new questions and answers have also been added. Based on the questions we have often received, we believe these updates will be of great benefit to readers with Valley Fever.
August 2005: Most people who are infected with Valley Fever do not have an immune disorder and anyone can suffer a severe or fatal case of this disease. Even so, Valley Fever can be far more rapidly fatal in people with immune diseases.
A study noted how the disease progression in immunocompromised patients commonly matched the infection in those with a healthy immune system, but with a devastating difference. "Pulmonary coccidioidomycosis in HIV-positive patients is not AIDS defining, yet it is common and is associated with a 70 percent mortality." (Johnson RH, Munoz AD, Caldwell JW, Amin NM, Martin DK, Welch G, Einstein HE. Coccidioidomycosis in HIV-infected patients: experience in the southern San Joaquin Valley of California. In: Einstein HE, Catanzaro A, eds. Coccidioidomycosis. Proceedings of the 5th International Conference on Coccidioidomycosis. Stanford University, 24-27 August, 1994. Washington, DC. National Foundation for Infectious Diseases; 1996: 420-21.)
To emphasize the danger of the combination of Valley Fever and immune disorders, 41% of another study's HIV/AIDS patients died in a median 54 days. These rapid deaths represented two thirds of the HIV/AIDS study's overall reported Valley Fever deaths. (Singh VR, Smith DK, Lawerence J, Kelly PC, Thomas AR, Spitz B, Sarosi GA. Coccidioidomycosis in patients infected with human immunodeficiency virus: review of 91 cases at a single institution. Clin Infect Dis. 1996 Sep;23(3):563-8.)
If you or anyone you know has an immune deficiency and lives in or visits an endemic area, please share this information with them. It may be a matter of life and death.
We have also updated our Misconceptions Page with information regarding flowers of sulfur and the Herxheimer reaction.
July 2005: The diagnosis of Valley Fever in Arizona this year has nearly tripled since our last update. In the first eight weeks of 2005, there had been 449 diagnosed cases. Now with the state's data updated through May, it shows that 1120 people have been diagnosed with Valley Fever. As usual, the number of undiagnosed and misdiagnosed cases must be many times this. Also as usual, Valley Fever would have been the state's dominant disease diagnosis if not for Hepatitis C and sexually transmitted diseases.
In that same time, the pneumonia deaths in the 11 cities selected by California's DHS have also nearly tripled to 2,993 lives. As many Valley Fever Survivors know, doctors' first instinct is often to use antibacterial drugs to fight pneumonia. This can make fungal problems like VF worse. How many of these deaths were due to mistreated Valley Fever?
A biohazard in your backyard
Summer has begun and many people think about gardening outdoors. Unfortunately, soil in a region endemic to C. immitis (the fungus that causes Valley Fever) creates a hazard to those who live there. Soil-disturbing activities like gardening or even letting one's children play in the dirt enhance the danger of contracting Valley Fever. As noted in a previous update, a recent study indicated there was a 4% death rate in children diagnosed with Valley Fever.
Exported Valley Fever
Gardening can even be a Valley Fever hazard to people outside endemic areas. Be advised that nurseries in these areas do not sterilize their soil before their plants and fertilizer are distributed across the nation. Unsuspecting buyers are not aware the soil may contain a biohazard that causes an incurable disease. The VFCE described a story of a woman in Europe who was infected with Valley Fever because she inhaled the C. immitis spores that were in the soil of a cactus plant that was sent to her as a gift from a friend in Arizona.
In fact, most of the wholesale nurseries we contacted in endemic regions that export their plants were not even aware that C. immitis existed. They also did not intend to do anything about it. Most of the cacti and tropical plants that can be purchased in the United States are probably grown in Valley Fever's endemic regions. The USDA does not intend to regulate this. Buyer beware! Be certain to use a properly fitted N95 respirator or better if you intend to bear this risk. Please write to the USDA and tell them they should not allow nurseries to ship plants with unsterilized soil. Tell them that your health matters to you!
May 2005: Ways to reduce the risk of contracting Valley Fever or being reinfected:
Anyone who breathes can be infected with Valley Fever in an endemic region. Even brief visits such as sporting events, business trips, vacations, changing planes at the Phoenix airport, and conventions like the Tucson Gem and Jewelry Show could pose a permanent health risk. If you do decide to visit or live in an endemic area, please consider these safety precautions.
Note: All it takes to contract cocci is inhaling one spore! Anyone, healthy at any age can contract Valley Fever. Many have their lives ruined forever - problems include debilitation, being unable to work, chronic pain, loss of insurance, and loss of housing. Some spouses can't deal with the disease and abandon the infected victim. Children have grown up without knowing what it is like to do things with their infected parent.
If children contract Valley Fever and are debilitated, it can hamper their lives forever and prevent their potential from being reached. The costs of life long medical care and drugs are extremely high. Unnecessary pain, surgeries, and various other problems are often a fact of life for those with VF. Unfortunately, many have lost members of their family to this incurable, devastating and debilitating disease.
Your help is needed! Write to your congressional representatives, senators, health department, and state legislature and tell them you want them to finance the research for a vaccination and a cure to VF. Only when the states are forced to accept responsibility for their biohazard will this epidemic end. Please view our Action Letters page to learn how you can help.
April 2005: With information reported from only 11 California cities in the first eight weeks of 2005, the rate of Valley Fever infection in California is shocking. With 240 reported in that period, there must also surely be many more undiagnosed and misdiagnosed sufferers of this disease. There were also 1,111 pneumonia deaths for the first eight weeks of the year. How many of those deaths were misdiagnosed Valley Fever?
In Arizona, cocci ranks third in reported cases of infectious disease, only behind sexually transmitted diseases and Hepatitis C. Arizona had 449 diagnosed cases, nearly double that of California. Even worse, a study indicates that 4% of Valley Fever cases in children were fatal.
For the health of our families and children Valley Fever Survivor® urges everyone to write their elected officials. Demand that warnings be instituted for residents and tourists that come to these states. To find politicians' addresses, visit www.govspot.com and then visit our Action Letters page for letter writing tips.
March 2005: Please take a look at our updated Valley Fever Survivor® store. We have added over a dozen new items including VFS® buttons and magnets. We hope you will consider purchasing them for yourself, family, friends and coworkers, and wear them proudly. You can help spread the word about the dangers of Valley Fever and at the same time help support VFS® in our endeavor to publicize this incurable disease and warn the nation. Besides new apparel and other items we also have a doggie T-shirt available for pet owners. Thank you for your support.
February 2005: People infected with Valley Fever have asked how they can find out whether their family, friends, and visitors who came to the endemic areas can be tested for coccidioidomycosis. This is important because people may have dormant Valley Fever infections but not know it. The new version of the Spherulin skin test is presently in Phase III trials and is expected to be licensed within the year. As soon as we know it is available we will update our web site with this information.
January 2005: By popular request, Valley Fever Survivor® now has a message board. We have forums for the discussion of Valley Fever, stories of personal experiences with the illness, and support for owners of pets with Valley Fever. We hope it will become the hub for the Valley Fever community. Click here to visit the VFS® message board.
December 2004: Since Valley Fever can cause arthritis, the following information about the arthritis drug Remicade (infliximab) is important. In the ATTRACT international drug studies, Remicade was linked to five deaths. "...one died of pulmonary embolism, two died of cardiopulmonary events, one died of tuberculosis and one died of coccidioidomycosis ('Valley Fever')." This drug is known to weaken the immune system and bring on opportunistic infections such as tuberculosis and Valley Fever. Other reported side effects include the activation of septic arthritis, multiple sclerosis, cancer, congestive heart failure, and more. We encourage VF patients who use or are considering using Remicade to discuss this with their physician. Ironically, some legal complaints against the pharmaceutical company read very much like a list of complaints that could be made against Valley Fever's endemic states.
There is also an important suggestion for those of you taking Diflucan (the brand name of the generic drug fluconazole) for VF. Since lower-cost generic versions of the drug are now available, you may wish to speak with your doctor about taking a generic form of the drug. We wish to thank Jerry for sending us this information.
Finally, several readers have asked about the status of the Valley Fever Center for Excellence's message board. We have contacted the VFCE and they say the board will remain down until they have a webmaster who revamps their site. If you would be interested in having a Valley Fever Survivor® message board here, please let us know.
November 2004: We have been asked to put together a list of quick facts about Valley Fever:
October 2004: Our Glossary has been updated with definitions for septic shock, hepatitis, and eosinophils and descriptions of how these relate to Valley Fever.
The Valley Fever Center for Excellence's Dr. John Galgiani was recently featured in a KVOA News Story on September 24th. He told KVOA that "Valley Fever poses a bioterrorist threat, perhaps even more dangerous than anthrax" and that the number of people diagnosed with Valley Fever infections in 2004 will be "more than any other year this reportable disease has been tracked in the state of Arizona."
August 2004: We have sent out five new Valley Fever letters. Two of them, our new letter to the Department of Homeland Security and our letter to the Department of Health and Human Services are now available on our Letters Page. These letters are even more important in light of the recent rise in Valley Fever cases and the summer dust storms that are sure to bring many more. This is a sample of the information we included:
"So far this year the numbers of reported Valley Fever diagnoses have increased dramatically. In Arizona for the month of June 2004, there were 309 reported Valley Fever infections while for the same month in 2003 there were only 150 reported infections. This was a 106% increase in reported cases. From January-June 2004 Arizona had 1652 reported infections while for the same period in 2003 there were only 1113. This was a 48.4% increase. California reported 109 Valley Fever infections for the first four weeks of January 2004 while there were only 40 reported infections for the same period of 2003. This represented a 173% increase."
We encourage all of you to write your own letters, especially to your own political representatives and the government agencies charged with protecting your public health. It is important for all of us to take action.
We have also updated our Misconceptions Page with new entries.
May 22, 2004: We have cited passages from the Code of Federal Regulations that can be an important part in veterans' legal efforts to achieve a disability rating with the highest percentage warranted. We hope that our legal information for veterans can be of some assistance.
May 2004: Four new facts have been added to our Facts and Commentary page. Fact #36 describes more of the race-specific consequences of Valley Fever, Facts #37 and #38 discuss the dangers of Valley Fever during pregnancy and the possibiity of birth defects, and Fact #39 describes the prostate and testicular problems Valley Fever can cause for men.
April 2004: We created a new page about Valley Fever misconceptions.
March 25, 2004: We have sent a new letter to the CDC. You can read this and several of our other letters at the letters page.
March 2004: A Major Victory!
Mike Chechak and his wife Louise have tried for years without success to change Mike's military disability status because of his severe continuing VF problems. They had given up until they contacted us at this web site. Mike contracted VF at the age of 20 while serving at Williams Air Force Base in Arizona in the 1950's. We sent a letter to the Department of Veterans Affairs on August 15, 2003 and we also sent the Chechaks all the pertinent information for them to send to the VA. In light of our information, we hoped they would look at his case again to change his disability status. We are proud to report that Mike will be receiving a 100% disability rating for his VF case retroactively.
In the past, the US military has denied veterans' health claims in spite of the fact that the military has known the devastating effects of this disease since the 1940's. Not only has this grievous error been reversed by giving Mike the disability rating he is rightly due, but now all veterans can benefit by a major policy change. Thanks to the information we collected and Mike's and Louise's perseverance, claims adjudicators now have a new directive for rating veterans' disability due to coccidioidomycosis.
We were honored to work with Mike and Louise and we thank them for not giving up. This is more than just a major victory for Mike because this change in policy will benefit the thousands of veterans serving in America's southwest, and is a sign that tenacious efforts will pay off! This is our first major success. The next step is to get the state and federal governments to provide full funding for a Valley Fever vaccine and a cure.
We have created the Letters Page to help those of you who wish to join us as a voice for action in the fight against Valley Fever. The Letters Page has important information for letters you can write. It also includes an archive of previous correspondence we have sent including the letter to the CDC where we coined the term SARFI for Severe Acute Respiratory Fungal Infection to illustrate the seriousness of this disease. Other letters like our original letter to Arizona and our page of AARP letters can be viewed there as well.
February 23, 2004: The VFCE is revamping their web site and several of our readers have noted that that their links have changed. The updated VFCE links are available now on our links page.
February 2004: Please take our new Opinion and Information Poll. It is short but very important. You can take the poll by clicking here or by clicking on the new poll icon beneath our surveys at the top of the page. We hope you will participate. Thank you!
January 2004: Arizona's 180 Day Statute of Limitations.
You may feel, as we do, that Arizona has been irresponsible and has withheld vital information from its visitors. The State of Arizona obviously kept information about Valley Fever off their travel brochures and other promotional materials to entice people to move to and visit their state. If you visited Arizona and wish to sue the state because you were infected with cocci, please note there is a 180 day statute of limitations from the moment you learned your infection was diagnosed. There have already been successful lawsuits against companies that have employees in endemic regions where they were infected with cocci. Perhaps it is time the state was forced to take responsibility for keeping Valley Fever a "local secret." Feel free to email us if you are considering such a lawsuit, as we believe we could provide the necessary information to prosecute a successful case.
December 2003: The Valley Fever Center for Excellence needs your help! According to the VFCE's 2003 annual report, "the State of Arizona has not perceived nor dealt with Valley Fever as an emerging health problem which could threaten future population growth, commerce, and tourism. This attitude and perception:
The University of Arizona and the State of Arizona need to re-evaluate their perception and attitudes toward Valley Fever, accept ownership of this disease and provide the VFCE necessary resources for the support of its core programs."
You can help the VFCE too by donating to them as instructed on our links page. Although VF is frequently misdiagnosed, it is still the most commonly reported non-venereal infectious disease to the Arizona Department of Health Services. Only chlamydia and gonorrhea were diagnosed more often than coccidioidomycosis in Arizona. Also, if you live in Arizona, please write to your state's politicians (their contact information is easily found at govspot.com) and contact the Arizona Department of Health Services (at (602) 542-1001) and tell them you are dissatisfied with their blatant disregard for past, current and future victims of Valley Fever.
November 2003: If you read our Frequently Asked Questions you were probably surprised that Nazi Germany invoked the Geneva Convention so America would move captured Nazis from cocci endemic areas, but that American citizens are not even given a warning. You may be even more shocked to know about an experiment with Californian juvenile hall prisoners (14-18 years old) who were deliberately sent to work camps knowing another youth died of cocci and many others were infected. In the experiment, the new prisoners' subsequent infections were tracked to see which specific camps were endemic to cocci. This has been added as Fact #64 on the Facts and Commentary page.
October 2003: Since 1996, the Valley Fever Center for Excellence stood alone as the only organization that helped with Valley Fever education programs and medical advice. It is with great sadness we report that their work has been dramatically scaled back due to a drop in contributions. Some of the most important members of the VFCE have even been forced to seek full-time employment elsewhere. Please consider a tax deductible donation to help restore the VFCE's staff and programs. Read our links page to see how to donate to them.
September 2003: The owner of a dog that was blinded by Valley Fever recently informed us about a charitable organization that can help people to pay for their animals' medical care. Their web site is www.imom.org and we have also linked to them through our links page. Although it is not often discussed in the literature, vision loss is a possible complication of Valley Fever in humans and animals.
August 19: Whether presently serving or retired, all veterans will want to read our letter to the Department of Veterans’ Affairs. It is now online and can be read at this link.
August 6: We hoped to have the AARP warn its membership about Valley Fever. While we have not yet convinced them to do so, we invite you to read our page of AARP letters. Anyone at any age can have a severe case of Valley Fever but it is especially important for seniors since they have a higher death rate associated with this disease. Please write the AARP and let them know how you feel.
August 4: We sent a letter to the CDC that can be read by clicking here. If you agree with us, please send your own letter to let the CDC know that you want these actions to be taken. In this letter we coined the term SARFI for Severe Acute Respiratory Fungal Infection. Perhaps it could help this old disease's publicity to have an new name.
August 2003: We have included information about possible medical complications of Valley Fever in our Symptoms page.
June 2003: Our store is finally open! Click here to visit the Valley Fever Survivor® Online Store!
May 2003: A new section has been added with this web site's most Frequently Asked Questions. This is a "must read!"
April 2003: We sent a letter to officials in the state of Arizona on April 2, 2003. It outlines many of the problems cocci causes and what these officials can do to address this situation. You can read the letter here. A similar letter is being sent to officials of other endemic states, and we encourage you to send your own letter to your state officials.
March 2003: Please visit our new Glossary. We now have twice as many cocci related definitions. We also have almost a dozen new entries in our Facts page.
Archives from 2002 to February 2003 are presently unavailable. To return to our home page click here.
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