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Also newly diagnosed VF

 
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jumpingjack



Joined: 22 Feb 2016
Posts: 5
Location: Tucson

PostPosted: Tue Feb 23, 2016 10:03 am    Post subject: Also newly diagnosed VF Reply with quote

Hello

It's been a long tiring painful year of this. Who knows how long I've had this, but I am now on Fluconazole 200 mg. 2x daily--minimal hair loss, grueling side effects. It is hard to get up and do something without getting short of breath and terribly cold ALL THE TIME. The rash is exasperating at times even though I use anti-histamines/Alo vera Triamcinolone acetone ointment for this. I went in for a lung function test and would not do well at blowing out candles at any birthday party--oh well! I see my pulmonologist today and see what he says. The CDC needs to get it's act together concerning this disease and EDUCATE doctors and medical communities on this as well. Hope everyone continues well.
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 272

PostPosted: Wed Feb 24, 2016 11:43 am    Post subject: Reply with quote

Hi Jumpingjack,

I'm sorry you had to deal with VF for so long - and hopefully it was not too long into your infection that you were actually diagnosed! Please let me know how your pulmonologist visit goes.

Regarding the education of the medical community, there are small steps being made but much more does need to be done - I hope VFS can continue to be a part of that. There is so much that could be common knowledge that doctors should use when fighting the disease, but is not. My next book will work to change that. At least the fact that your doctor diagnosed VF and is willing to treat you for it is half the fight.

You may want to join us on our Facebook support page since so many people prefer to use facebook. This message board is not nearly as busy now as it had been when first created.
https://www.facebook.com/groups/1063806976985799/

You can friend me and Sharon from Valley Fever Survivor:
Dave: https://www.facebook.com/profile.php?id=100010591627537
Sharon: https://www.facebook.com/profile.php?id=100010502297961

We also have a public page on Facebook with updates from other news articles at:
https://www.facebook.com/valleyfeversurvivor/

Please keep us posted with your progress.

All my best,
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David Filip
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Co-Author of "Valley Fever Epidemic"
www.valleyfeverepidemic.com
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jumpingjack



Joined: 22 Feb 2016
Posts: 5
Location: Tucson

PostPosted: Wed Feb 24, 2016 5:27 pm    Post subject: Reply with quote

Hi

Thank you for everyone's support.

The doctor appt. didn't go well. I regrouped this am and I am now making arrangements to schedule an appt. with a Infectious Disease Specialist as soon as my pcp gets the referral for me.
Will keep in touch.

Betty


To the World You May be One Person...
... To One Person You May Be the World
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jumpingjack



Joined: 22 Feb 2016
Posts: 5
Location: Tucson

PostPosted: Wed Feb 24, 2016 5:42 pm    Post subject: Reply with quote

Hi

Thank you for everyone's support.
Well, my doctor appt. did not go well. This morning I regrouped and called my pcp for a referral for a Infectious Disease Specialist. As soon as I get this I will be making the appt. asap.
Will keep in touch.

Betty
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vfs_admin_Dave
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PostPosted: Thu Feb 25, 2016 4:52 pm    Post subject: Reply with quote

I'm sorry things did not go well. Another thing you can do is see if the ID doctor is willing to consult by phone with a VF expert. Let your ID doctor know that Kern Medical Center's Dr. Royce Johnson does free doctor-to-doctor consultations to help them get up to speed on Valley Fever. Perhaps if your ID doctor does not have a lot of experience with VF that would be an option. Some have given a copy of "Valley Fever Epidemic" to their doctors to help them understand the disease and medical treatment as well.

I hope your next medical appointment will provide some much-needed relief.

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



Joined: 22 Feb 2016
Posts: 5
Location: Tucson

PostPosted: Sat Feb 27, 2016 1:21 am    Post subject: Per "Dr. Royce Johnson. Kern Medical Center" Reply with quote

Hello Dave

Yes, I will definitely do that-- which ever comes first; an ER doctor or the ID Specialist referral very soon.
When talking with ID office receptionist, I asked if it would take long to get an appointment and she said no, usually within a week--we'll see.
Thank you, for the info.

Betty
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jumpingjack



Joined: 22 Feb 2016
Posts: 5
Location: Tucson

PostPosted: Tue Mar 01, 2016 2:30 pm    Post subject: No referral Reply with quote

Hello Dave,

Well I hit a snag with the referral. ID office called to tell me I could not self refer myself. I called my pcp and spoke with the receptionist about it and told her that when she asked me why I needed one; I told her I'd been having concerns with my lung that I had discussed with both doc and the nurse and dr. referred me(Pulmonologist) requested to see one. When I first came to my 1st Pulmonologist. I was blown-off from my pulmonologist after x-ray;s and cat scans (cancer scare) and small Pleural Effusion and previous lung collapse and he took the let's wait and see attitudude. this was last February 2, 2015. It's been 1 year, 1 month.
The 2nd pulmonologist did the sleep study, x-rays, cat scans, biopsy (NEG), blood tests, (NEG).breathing test, lung function. (did he get mad cause I refused the C-pap) which is extremely $$$$. ER doc. suggested I tell my pulmonologist to check for Valley Fever--I did.
I had a lung infection reguiring Fluconazole 200 mg 2x daily for 2 months-- and last check up was told to discontinue medication. (don't know what type of infection) will ask pcp Thurs. Will I keep getting pneumonia as I have and is it NOW (CHRONIC). Last appt. I said I was feeling lousy, the exhaustive itching, tired and he replied your lungs are clear. Go to your pcp--I said I have already and she prescribed ointment (but doesn't help). Your lungs are Clear, Go to pcp to refer you to a dermatologist. Come back in 3 months,(Didn't I just say I don't feel WELL?). Now without the Fluconazole I feel as it's open season on my lung--again!
I made an appt. this Thursday 3/03/16 to speak with my pcp, I need that referral. I am so FRUSTRATED AND EXTREMELY ANGRY.


Betty
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vfs_admin_Dave
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Joined: 19 Dec 2004
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PostPosted: Wed Mar 02, 2016 4:13 pm    Post subject: Reply with quote

Hi Betty, I'm sorry things are so frustrating. Having chronic pneumonia should not be something that results in a doctor saying "your lungs are clear of infection." If your Thursday appointment does not go well, even calling an emergency room and seeing what they recommend - or just contacting a new doctor - is better than chronic pneumonia.

Also, it is not clear to me whether you had recent testing for VF. Did you? Even whether or not the blood test is positive, if your sickness was better on the antifungal drug and your pneumonia got worse, that is a pretty clear sign it is having an effect. Talk about it with your PCP and see whether another try with antifungals might be warranted.

I will pray that things go better for you tomorrow.

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