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Just Diagnosed with VF

 
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klampey



Joined: 16 Oct 2010
Posts: 12
Location: Tehachapi, CA

PostPosted: Sat Oct 16, 2010 12:34 pm    Post subject: Just Diagnosed with VF Reply with quote

Hello All,

I'm a newbie here and am very happy to find this site. I just received my test results for VF this last Thursday and it's positive. I've been very ill since August and have had both a severe sinus infection and Pneumonia. My first test came back negative so there was a cancer scare. I'm thankful it is VF instead of cancer. I'm 33 and have always been healthy but VF has hit me hard. I think it might have spread into my lymph nodes because I have a lot of neck pain, sometimes severe and sometimes not. My next appointment isn't until the 27th. I wish it were sooner than that, I'm very anxious to know more about my situation. The doctor just had a nurse call me to say it was positive. That's all I know! Just wanted to introduce myself and say that I am glad to have found you guys. Take care.

Karen
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Budster



Joined: 29 Dec 2004
Posts: 346
Location: Simi Valley, CA

PostPosted: Sat Oct 16, 2010 1:59 pm    Post subject: Reply with quote

Karen, sorry you have to be here... I would call my Dr and see if they will start you on anti-fungal meds (fluconozole/Diflucan)right away, before your next visit. It is prudent to start meds as soon as possible to keep the VF from spreading too much! Keep us informed on your progress.
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Warm Regards,
Jerry

see my VF webpage here:http://www.budster.com/vf-01.htm
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klampey



Joined: 16 Oct 2010
Posts: 12
Location: Tehachapi, CA

PostPosted: Sat Oct 16, 2010 4:56 pm    Post subject: Reply with quote

Thank you, Jerry. I will call on Monday. I'm so tired of feeling like this!
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Sat Oct 16, 2010 8:56 pm    Post subject: Reply with quote

Karen,

I'm sorry to hear that you have VF but very glad that you have found this message board. You mentioned that your neck hurts. Is it stiff? That is one of the signs that you could have disseminated cocci meningitis. The only test for that is a lumbar puncture. I know that sounds terrible but I have heard it isn't as bad as most people expect. It is imperative that you find out if it is cocci meningitis. My brother lost his life because they did not diagnose him soon enough. Robin on the message board is in a wheel chair because of cocci meningitis.

You really need to learn as much as possible about VF so that you will know what questions to ask your doctor. Many doctors are ignorant of this disease and you need an Infectious Disease doctor who is experienced in treating VF.

I'm sorry if I am scaring you. I only want you to be aware of something that could possibly cost you your life. The book "Valley Fever Epidemic" is the best place to get your questions answered and is in layman's terms so is easy to understand. You really have to arm yourself with knowledge so you can be part of your treatment plan in fighting this disease. Please keep us informed of your progress.
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God Bless you and keep you,
Kathy
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klampey



Joined: 16 Oct 2010
Posts: 12
Location: Tehachapi, CA

PostPosted: Sat Oct 16, 2010 10:01 pm    Post subject: Reply with quote

Thank you, Kathy. I have been continually researching VF for the past 2 1/2 weeks since my Pulmonary doctor was convinced that is what was in my lungs despite the negative result first time around. To be honest, I am a little scared. According to everything that I have read, I have a severe case and now my neck symptoms make me think that it has spread. I will call the doctor on Monday. I have 5 beautiful children who need their mom around and healthy. I really am happy to have found you guys. You'll probably see me online all of the time because I'm reading the whole site and all of the posts. LOL Smile
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claudia c



Joined: 27 Jun 2007
Posts: 478
Location: seattle washington

PostPosted: Sun Oct 17, 2010 10:39 am    Post subject: Reply with quote

Hi Karen. I'm happy you found this website. I have gained a lot of knowledge as well as support from VFS. Kat is right about getting an infectious disease doctor involved. Valley fever can pose as so many other types of conditions or diseases you need that one doctor who knows about VF. I have a different form of VF and lost the rest of my right lung this summer due to cavitations. Having this disease can be life changing as you have read. You are so right about needing to be well for your kids. It is a tough balancing act but you need to also rest and take extra good care of yourself. I hope you don't need a lumbar puncture but tell your doctor about every symptom you might be experiencing. Be your own best advocate. There are folks that use different types of supplements and herbs they feel are helping or curing. They don't replace conventional VF treatments though. Please keep us posted on your progress. We care. Best wishes, Claudia
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klampey



Joined: 16 Oct 2010
Posts: 12
Location: Tehachapi, CA

PostPosted: Sun Oct 17, 2010 12:20 pm    Post subject: Reply with quote

Thank you, Claudia. I will keep you all posted. Smile
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klampey



Joined: 16 Oct 2010
Posts: 12
Location: Tehachapi, CA

PostPosted: Mon Oct 18, 2010 2:43 pm    Post subject: Reply with quote

Hey guys,
I am having a really bad pain day. I can hardly function with my chest and neck hurting like this. Even my teeth ache. I couldn't even sleep. I called my doctor this morning and told him about the severe pain (well the nurse) and should I still wait until the 27th to come in. The nurse called back 5 hours later with a Vicodin prescription for me. Sad At what point should I check myself into a hospital if this continually gets worse before the 27th? Today is just a really bad day, like I said. Yesterday was a good, less painful day. I'm not really a very needy person, I just don't know who to ask!!!! My doctor is supposedly knowledgeable and he is not worried, so maybe I am just freaking out????
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claudia c



Joined: 27 Jun 2007
Posts: 478
Location: seattle washington

PostPosted: Mon Oct 18, 2010 3:20 pm    Post subject: Reply with quote

Hi Karen. You know symptoms often wax and wane when it comes to VF until every day is a "waxing" day. My experience over the many years is a tendency for doctors to treat in a very slow manner. I wish my particular case would have been treated more aggressive and timely. I may not have lost my lung. I have no explanation why treatment is on the slow track for so many VF sufferers. I am just mentioning all of this so maybe it won't happen to you in the future. Is it possible for you to go to the E.R. if your symptoms since your symptoms are so worrisome? It is the only thing I can think of if your doctor insists on seeing you the 27th. Best wishes, Claudia
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lsr



Joined: 06 Oct 2010
Posts: 5
Location: Seattle, WA

PostPosted: Mon Oct 18, 2010 6:45 pm    Post subject: Reply with quote

Hi Karen,

Ditto to what everyone else has said. My mom suffered a stroke from disseminated cocci. She presented to her doctor with a worsening, chronic headache w/ fever and vomiting and her doctor told her it was migraine...and prescribed vicodin (which barely touched the pain). Had she been diagnosed/treated earlier, she might be in a better situation today.

You MUST be your own advocate and insist that your doctor listen to what you are telling him. Do not let him dismiss you. Why not get the tests that will rule it out one way or another. Best wishes and be well.
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Ria



Joined: 26 Feb 2008
Posts: 111
Location: Overland Park, KS

PostPosted: Mon Oct 18, 2010 6:54 pm    Post subject: Reply with quote

Karen,
My advice.....I would call your doctors office first thing in the morning and insist on talking with your doctor (not his nurse). If he is still telling you to wait until the 27th I can only assume he is not as knowledgeable about vf, especially since you have already tested positive! I was a young mom when I was first diagnosed in my third trimester of pregnancy so I don't think you are "just freaking out"......I think that you are a great mom for wanting what is best for your children. You know your body better than anyone else. Hang in there and keep us posted!
Ria
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TimC



Joined: 13 Nov 2012
Posts: 2
Location: Bakerfield, Ca

PostPosted: Tue Nov 13, 2012 2:01 pm    Post subject: Wondering if I have VF Reply with quote

First I'd like to say how awful some of the stories are. I am saddened for the loss of life - both fully and partially.

I'm newly concerned about having VF. Here's my condensed story:
Since the end of 2011 I've been experiencing fatigue, lethargy, low enegery, etc. Around the end of springtime this year I started with shortness of breath. In june of June 2012, I had a lengthy cold and sore throat - lasted well over a week. I pushed myself as always (2 hours at the gym before 10-12 hours at work) even though I was sick. One night while laying bed, I experienced tightness in my lungs. After afew hours, I had difficulty breathing. I drove myself the the ER, they rushed me in, did all the blood tests, breathing treatments, echo, xrays, etc. The ER Doc told me I had pneumonia, she gave me the usual meds and instructed me to see my regular doc when the meds are almost gone.

I did exactly that, my regular doc told me the ER Doc gave me the wrong meds for pneumonia. My reg doc gave me diff meds. Took those for about a week. Felt much better, but my shortness of breath never went away.

Fast forward from June to late Oct this year. Had the flu shot at noon one day in Oct, that night while laying in bed, same thing: tightness in my lungs, after a while I had difficulty breathing, so back to the ER. The ER Doc said, "we reviewed your xrays and data from when you were here in June. You def did NOT have pneumonia". She suggested I see a pulmonologist for ashtma. She gave me the same meds that she gave me in June and again instructed me to see my regular doc.

I did that again and told her what the ER Doc said. My reg doc reluctantly agreed to have me take a methacholine challenge at UCLA (Methacholine Challenge is a test taken to identify asthma, it consists of 5 or 6 viles of Methacholine cocktails which are basically a man-made mixture of liquid allergens that trigger astma attacks. The liquid within each vile is nebulized before breathing them into the lungs). After each vile, the patient is tested for restricted breathing. I failed on vile #3, so I never finished the test as the test is designed to halt as soon as a positive result is obtained. If the patient makes it through the entire test without reduced lung function, he/she doesn't have astma. Even though the technician couldn't tell me that I have asthma (he's not a doc), I'm prettty certain I do (I mean, after all - I did fail the test).

My appointment with the pulmonologist is later this month (Nov 26th), so we'll see what he has to say when I'm evaluated in his office (and he has the MC challenge results in hand). In between the MC Challenge and the pulmonologist, I went to an allergist who also specializes in asthma.

While there, I took extensive allergy testing in his office, he said I def have allergies, but they're not super-strong allergies. He said he thinks my allergies trigger asthma attacks (so I gues he too thinks I have asthma). Meanwhile, he gave me Simbicort to breath twice daily and a nasal spray twice daily (Dymasta ?). He also gave me albuterol for emergency use, but haven't had to use it yet. Been doing the Simbicort and Dymasta about 5 days now. I feel better, but I am still short of breath and it never goes away. I apologize if I mis-spelled the medications.

Last add: I live and work in LA, but in 2010 I bought a second home in Bakersfield Ca. I visit it once or twice each month, but a little more during the summer months (water skiing). Recently a Bako neighbor told me about VF and how it almost killed a fam friend. So naturally it freeked me out. With what you've read above:
- Am I being overly concerned about having VF (fatigue and shortness of breath)?
- Should I see a VF doc?
- Does a reputable VF doc reside in LA
- If not LA, how about in Bako?

Thanks for your time.
Tim
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susan ulmer



Joined: 04 Oct 2010
Posts: 418
Location: albuquerque nm

PostPosted: Tue Nov 13, 2012 5:48 pm    Post subject: Reply with quote

Hi Tim. Sounds to me like a VF test would be on the top of your list, especially since you are out doing sports in Bakersfield. I assume that you are having your tests done in LA where maybe the threat of VF is not the first thing they think of. However, if you do have VF, getting all these prophylactic doses of antibiotics and steroids is not good for you...the "take this and call me in a week" approach is pretty dangerous when you are potentially dealing with something that can affect your life much more than asthma. It's not to say you couldn't be having an allergic reaction to something but if this is the first time in your life that allergies have posed so much of a problem, I would definitely have myself tested. It's no skin off the doctor's you know what and could save your life.

If you hit "search" at the top of the page and put in "Dr. in Bakersfield", there are a couple of posts there that recommend doctors. Check with an Infectious Disease doctor in LA as to whether they are experienced with VF. It is becoming more well known but not to the point that a lot of doctors really have a grasp of the myriad symptoms or potential treatments.
All the best,
Susan
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TimC



Joined: 13 Nov 2012
Posts: 2
Location: Bakerfield, Ca

PostPosted: Tue Nov 20, 2012 7:43 am    Post subject: Newly concerned says "Thanks Susan"! Reply with quote

Susan,
Thanks for your input and recommendation. Requesting the VF test was on my shortlist anyway, but in that I've been visiting and palying outdoors in Bako for almost 3 years, it's apparently the prudent approach. I'll provide an update as soon as I can. I see the pulmonologist at UCLA on Monday Nov 26th. I'll request a test during that visit.

Meanwhile, if the UCLA pulmonologist is retisant to provide the test, I'll contact a Bako VF doctor.

Thanks again Susan.

Tim
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Wed Nov 21, 2012 5:29 pm    Post subject: Reply with quote

Tim, the best VF doc in Bakersfield is Royce Johnson.
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God Bless you and keep you,
Kathy
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