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Hi, this is my Valley Fever story: Cocci meningitis version

 
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Nick



Joined: 20 Jan 2014
Posts: 5
Location: AZ

PostPosted: Tue Jan 21, 2014 4:14 pm    Post subject: Hi, this is my Valley Fever story: Cocci meningitis version Reply with quote


Hi everyone,

I am happy I've found this community and want to thank David and Sharon for creating such a wonderful web site for us.

I've been living in Tucson, AZ for three years, and I'd never heard of valley fever before I contracted this disease.
Living in an endemic area I really can't recall how and where I pick up cocci spores in the first place. But I do want to say that, our state government is to blame for not educating residents and tourists enough on potential danger of valley fever. I don't see the point of setting up a so-called "valley fever awareness week" in Arizona without actually genuinely telling people real information on valley fever. That's how I breathed in deadly fungus in Tucson thinking----like every other survivor-----that I'm lucky enough to be living in a place where air quality is considered one of the best across the nation.

I first had my flu-like symptoms on the morning of November 17, 2013. I felt tired in the early morning(that's atypical) and had muscle soreness all over my body; I knew that I probably had a fever or something so I went to bed early that night. For the next few days, I'd start having some slight throbbing headaches and confusion. After a week of being so sick at home, I finally went to urgent care. A male physician asked me about my neck stiffness, cough, and fever but failed to suspect that I might have what I now know valley fever. I did a chest X-ray and was told I have bacterial pneumonia, treated with antibiotics for 5 days.
After my trip to urgent care I started to feel better day after day, believed that it was pneumonia that made me so ill. And I went back to school and work pretty fast.( This is the end of my diagnosis of pneumonia.)

Two weeks later, Sunday, December 15, 2013, I woke up with a slight headache again. It wasn't like an excruciating headache so I went for a walk as always. But the headache didn't go away and stated to get worse by the afternoon. I went to buy aspirin, and certainly it did not help. Next day morning(Dec,16), I drove to ER, suspecting I might have meningitis(headache, fever, stiff neck). ER doctor did a spinal tap for me and found sign of meningitis in my spinal fluid. I was admitted to hospital that night.
I was given a battery of tests, including MRI, HIV, X-rays, and blood drawn for different tests every night. But again, no one had suspected that I might have valley fever for the first few days of my stay in the hospital (I consider this misdiagnosis too). Besides, I'd had tons of antibiotics for 4 days. It wasn't until Dec 19, 2013, a infectious disease doctor finally raised his question on valley fever( It seems to be the last thing doctors will think about in endemic areas). They immediately changed to anti-fungal IV to treat my ongoing bad headaches and nausea. Meanwhile, my serum and CF were sent to U.C. Davis for further analysis. On my first doctor appointment, cocci meningitis was confirmed. I am now taking Fluconazole 800 mg/day. It's has been a month since I was discharged by hospital. I don't have a headache, thank god; I still have ringing sound in my ears; I rest a lot so my body is slowly healing; the med I'm on is working. NO unbearable side effects, except for dry lips and difficult bowel movement( and maybe insomnia).

I don't know how long my good days can last, and certainly don't want any bad days to come down the road. I will pray for myself, my family living in Tucson, and everyone suffering from Valley Fever. I hope everyone is getting better; stay positive, stay strong.

Lou Smile
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Sun Jan 26, 2014 3:37 pm    Post subject: Reply with quote

Hi. Thank you very much for sharing your story. Although others had not commented on it, the beliefs you had expressed about Arizona's attitude is shared by many.

We will pray for your health as well.

All my best,
_________________
David Filip
Co-Founder of www.valleyfeversurvivor.com
Co-Author of "Valley Fever Epidemic"
www.valleyfeverepidemic.com
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Sat Feb 01, 2014 11:15 am    Post subject: Arizona is at Fault Reply with quote

Yes, Nick. I share your anger about Arizona keeping Valley Fever on the "down low". It took just 6 years here in Surprise for me to lose my upper left lung lobe, and I'm still on 400Mg/da over a year later. In my opinion, it seems completely absurd that when someone from out of state buys a home here in AZ, a seller doesn't have to disclose that 60% of all Valley Fever cases are in AZ, and most of those in Maricopa Cty. We are situated in the "hot corridor" that runs from here to Tuscon. Our house is within 2 miles of all the 303 expansion earth moving. We were told about the expansion, but not what earth movers meant to our health. In my opinion, it's criminal.
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JeanK



Joined: 17 Jan 2012
Posts: 42
Location: TUCSON

PostPosted: Sat Feb 01, 2014 1:47 pm    Post subject: Reply with quote

Hi Linda & Nick,

I've been living in Tucson after my husband and I moved from Fl in '99 because I wanted to go to school here & practice in my field a year or so before finally going back to CA to be with my sons and my husbands daughter. So much for that plan.

Between not being able to sell our house due to the housing crash in '08 and my Valley Fever adventure, we'll be staying here for the duration. And since we lost the house due to my husbands dementia, I'm tempted to put a large warning sign up out front of my little community home but realize at this time it would certainly harm many older adults buying and selling in this neighborhood.

I really don't know if I knew about Valley Fever beforehand if I still would have moved here but I do know that living here has been a mixed blessing and an adventure. Currently I choose not to take meds for the condition although I never know what to expect, esp. with my now occasional coughing up blood episodes and my husbands lovely face ulcer.

Dammed if you do-dammed if you don't situation. But after all, I'll be 70 in Sept. and my husband is 85. You guys being younger, will need will really need to think hard about this situation but at least I was glad to view last nights local news (4) where there was a really good report re: VF and Dr. Gagiliano's (sp.?) statement that he believes that a cure likely come for this regional fungus if a drug company decides to take it on. (maybe a close relative of the co. will suffer from it-who knows???)

Take care, Jean
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Nick



Joined: 20 Jan 2014
Posts: 5
Location: AZ

PostPosted: Mon Feb 03, 2014 3:54 pm    Post subject: Reply with quote

Hi Linda and Jean,

Thank you both for taking time reading my story. I know my experience with this disease is fairly young compared to most of you having been through so much all these years. We all know it can be frustrating sometimes when we think about situation we are in. Just a few day ago when I talked to my friend about my misfortune, she said this to me: "When god closes one door, he opens another for you."
Although the cure for valley fever can be found one day, it won't be soon if no funding support our scientists.

If I can't change the world around me, I guess I'll just try to adapt to it. Be positive, stay strong.

Razz
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