Valley Fever

Posted by frank4848 @frank4848, Nov 2, 2018

I was diagnose with Valley Fever and looking for other individuals who also was diagnosed with this illness.

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@sueinmn

Do you know if, at the time of the biopsy, they sent any of the specimen to be cultured, to see if bacteria grew?
There are other infections that can cause masses to appear in the lungs. Some of these need to be identified through ,culturing in a special lab for several weeks because they can be slow growing.

Also, what symptoms led you to seek treatment in the first place? Did they go away while you were being treated?

If in fact it is asymptomatic Valley Fever, stopping treatment is common. Has a plan been made to continue to watch the mass to see what happens?

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Thank you for your response! My first symptoms were coughing ALOT, chest pressure, and hard to breathe. Went to my general doc and she ordered a CAT Scan, and found me a lung doc while waiting for CAT scan results. After my lung doc reviewed my CAT scan results, he said it could be a cancerous tumor and if so, they could take it out. Then I had the biopsy for cancer and it came back negative, and then it was decided it must be Valley Fever even tho all the tests were negative, so no specimen to be cultured to see if bacteria grew. Being on the Fluconazole did help with my cough after a month. No other treatment recommended, except a 6 month checkup. But my general doc that I see will definitely send me for another CAT after 6 months. The CAT scans showed Jan - 3.3 x 2.8 x 2.8, Apr - 3.4 x 2.7 x 2.9, Aug - 2.7 x 3.2 x 2.7 Do you agree that it is ok to leave alone in my lung? Do you suggest further research?

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@bcmevans22

Thank you for your response! My first symptoms were coughing ALOT, chest pressure, and hard to breathe. Went to my general doc and she ordered a CAT Scan, and found me a lung doc while waiting for CAT scan results. After my lung doc reviewed my CAT scan results, he said it could be a cancerous tumor and if so, they could take it out. Then I had the biopsy for cancer and it came back negative, and then it was decided it must be Valley Fever even tho all the tests were negative, so no specimen to be cultured to see if bacteria grew. Being on the Fluconazole did help with my cough after a month. No other treatment recommended, except a 6 month checkup. But my general doc that I see will definitely send me for another CAT after 6 months. The CAT scans showed Jan - 3.3 x 2.8 x 2.8, Apr - 3.4 x 2.7 x 2.9, Aug - 2.7 x 3.2 x 2.7 Do you agree that it is ok to leave alone in my lung? Do you suggest further research?

Jump to this post

Let me preface this - I am not a doctor, but a lung patient who had a "mystery illness" for over 4 years before it was properly diagnosed. My symptoms were coughing, fatigue, shortness of breath, increased asthma symptoms, and coughing up dark green sputum. I was treated for bronchitis, pneumonia, intractable asthma - over and over, with short periods of relief. I was seen by my primary, as well as by Urgent Care and ER docs while traveling.

In 2018 I could no longer walk one block without pausing, and was coughing 24/7. My PCP was on leave, so I was seen by her sub, who ordered a new lung x-ray & thought she saw "something suspicious" so she referred me for a CT scan.

The radiologist reported many abnormalities in my lungs & I was seen by a pulmonologist who diagnosed bronchiectasis & suspected 2 likely lung infections. He suspected Valley Fever but the test was negative. Then he sent in 3 sputum samples that were cultured & after one week I was diagnosed with pseudomonas & treated. Several weeks later they also diagnosed MAC (Mycobacterium Avium Complex) a very slow growing relative of TB. Routine blood tests do not show these infections - they hide deep in the lungs.

Pseudomonas is almost always treated with specific antibiotics after identified. MAC may or may not be treated, depending on symptoms and severity.

As long as you are feeling better and you are going to be watched closely, "wait and watch" is a legitimate strategy. But, if you begin to feel ill again, or the mass grows, and you again test negative for Valley Fever, you might want to explore the possibility that you have one of the more uncommon infections, especially if you have ever had lung problems before.

Have you had lung issues in the past, or are you a current or former smoker? Do you have other risk factors for lung cancer like family history or exposure to a toxic work environment?
If so, you might want more aggressive research. Otherwise, if you are comfortable with the plan, go for it.
Sue

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I have nodule in my left lower lung from histoplasmosis. Its been monitored for past 3 years, but its been stable and not like original symptoms of 103.7 fever, debilitating body aches, hard to breathe, horrible cough (i'd say worse than covid which i recently had) and bed ridden for 3 months. My 1st month of fluconazole were pills and even taken with orange juice on empty stomach, it wasnt absorbing in my blood. ID md switches to liquid form and then i finally started slowly feel better. For work up, cocci was one of differential dx, (i live in Bay Area and questions driving on highway 5 toward LA with windows down were asked by pulm md), My lung biopsy results ruled out cocci, the cells were narrow based budding. And actually nothing grew in the lab for next 6-8 weeks, but then my histoplasmoais blood work labs were high 2 months into infection (were borderline positive ) initially. I had to be taken off from blood thinners for duration of antifungal treatment as there are severe interactions between two meds. (Its probably the reason for someone being taken off cholesterol medications ). With in regards of nodule ever "waking up" not a good thing, per pulm it can happen with low immune system such as with transplants or with cancer treatments....
For now i end up with adult onset asthma after fungal infection.

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After three weeks of waiting for blood work, I was diagnosed with cocci . I am from Florida but spent nearly 3 weeks hiking, etc in Arizona, Utah and Colorado. Most Doctors here are not experts because it is not common in Fla. PET scan lit up an area that they thought was (and still maybe). Had to convince dr to give me blood test. Going to pulmonologist who gave me Itraconazole which I have been on for 2 weeks. Going to ID dr next week . Another CT scan in one month to see if mass reduced. Does anyone have sever cough? What do you take to stop it? Dies it take a long time for meds to work?

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@aimers

I have valley fever that is now dormant....does anyone know if you have any immunities to getting it again if you should return to the endemic area Arizona......No one can answer this...trying to decide whether to return there this winter or not @ginus

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I have many diagnosis from the same pulmonalogist 2014 Asthma, 2015 COPD,
2016 Bronchietasus, Infectious Disease 2017 Psuedomonas and MAC. I spent 3-4 months in Arizona every winter since 2012. I wish I had known. Last winter I went to Mayo for a
second opinion. On 2023 I was put on Azithromycin, Ethambutol, Rifitbutan.
Drs. took me of Rifitbutan because it affected my liver to the point of hepititus.
I'm still on Bactrim. Drs took me off Ethambutol because it affected my Macula
to the point my vision id blurry in one eye. Drs want to start me on CLOFAZIMINE.
Anyone have bad side affects from hat drug??? I'm not going to Arizona this year..too much coughing and lack of energy.....so my Mayo Drs want to drop me...and get a pulmonologistnear me. Any advice would be wonderful.

REPLY
@bcmevans22

Thank you for your response! My first symptoms were coughing ALOT, chest pressure, and hard to breathe. Went to my general doc and she ordered a CAT Scan, and found me a lung doc while waiting for CAT scan results. After my lung doc reviewed my CAT scan results, he said it could be a cancerous tumor and if so, they could take it out. Then I had the biopsy for cancer and it came back negative, and then it was decided it must be Valley Fever even tho all the tests were negative, so no specimen to be cultured to see if bacteria grew. Being on the Fluconazole did help with my cough after a month. No other treatment recommended, except a 6 month checkup. But my general doc that I see will definitely send me for another CAT after 6 months. The CAT scans showed Jan - 3.3 x 2.8 x 2.8, Apr - 3.4 x 2.7 x 2.9, Aug - 2.7 x 3.2 x 2.7 Do you agree that it is ok to leave alone in my lung? Do you suggest further research?

Jump to this post

I have a very similar situation and wondering how your last CT scan was? How are you doing now?

REPLY
@barbbauer

I have many diagnosis from the same pulmonalogist 2014 Asthma, 2015 COPD,
2016 Bronchietasus, Infectious Disease 2017 Psuedomonas and MAC. I spent 3-4 months in Arizona every winter since 2012. I wish I had known. Last winter I went to Mayo for a
second opinion. On 2023 I was put on Azithromycin, Ethambutol, Rifitbutan.
Drs. took me of Rifitbutan because it affected my liver to the point of hepititus.
I'm still on Bactrim. Drs took me off Ethambutol because it affected my Macula
to the point my vision id blurry in one eye. Drs want to start me on CLOFAZIMINE.
Anyone have bad side affects from hat drug??? I'm not going to Arizona this year..too much coughing and lack of energy.....so my Mayo Drs want to drop me...and get a pulmonologistnear me. Any advice would be wonderful.

Jump to this post

My Pulmonary Dr. wants me to start those 3 meds you mentioned above and I'm not sure I want to start them based on what I have read on this web site. I'm seeing an Infectious Disease Dr. this coming Wed. and hoping she can lead me in a different direction regarding these meds. Good luck to you.

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As long as you don't get the side affects...it should be ok...... but I get all the side affects from any drug.
I took Rifiputin for 2 months and my liver was damaged they called it hepatitis.
I took Batrim 1600 milligrams daily for 4 months and my hemoglobin numbers dropped so I needed to
take iron pills....which never helped because I was still taking the Batrim... four more months and the Batrim caused my hemoglobin was so low... I had to get Iron IV's. and beings I'm still taking Batrim....I'm sure its stills causing things to be depleted in my body. I took Ethambutol 1400 milligrams M,W,& F for 1 year and it caused my Macula in my Eye to tear.....so I have blurry vision in one eye. I'm also taking Azthrmycin and have no side effects that I know of, yet. my next appointment they are going to figure out what third antibiotic they want me to take.
they mentioned clofazimine that has the side affect of turning your skin and salvia and urine, etc a dark reddish color they called it hyperpigmentation in the first 10 weeks. (it may go away when you quit the pills.) I don't think I will. take that one. I dont think they really know what actually works.

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@sueinmn

Let me preface this - I am not a doctor, but a lung patient who had a "mystery illness" for over 4 years before it was properly diagnosed. My symptoms were coughing, fatigue, shortness of breath, increased asthma symptoms, and coughing up dark green sputum. I was treated for bronchitis, pneumonia, intractable asthma - over and over, with short periods of relief. I was seen by my primary, as well as by Urgent Care and ER docs while traveling.

In 2018 I could no longer walk one block without pausing, and was coughing 24/7. My PCP was on leave, so I was seen by her sub, who ordered a new lung x-ray & thought she saw "something suspicious" so she referred me for a CT scan.

The radiologist reported many abnormalities in my lungs & I was seen by a pulmonologist who diagnosed bronchiectasis & suspected 2 likely lung infections. He suspected Valley Fever but the test was negative. Then he sent in 3 sputum samples that were cultured & after one week I was diagnosed with pseudomonas & treated. Several weeks later they also diagnosed MAC (Mycobacterium Avium Complex) a very slow growing relative of TB. Routine blood tests do not show these infections - they hide deep in the lungs.

Pseudomonas is almost always treated with specific antibiotics after identified. MAC may or may not be treated, depending on symptoms and severity.

As long as you are feeling better and you are going to be watched closely, "wait and watch" is a legitimate strategy. But, if you begin to feel ill again, or the mass grows, and you again test negative for Valley Fever, you might want to explore the possibility that you have one of the more uncommon infections, especially if you have ever had lung problems before.

Have you had lung issues in the past, or are you a current or former smoker? Do you have other risk factors for lung cancer like family history or exposure to a toxic work environment?
If so, you might want more aggressive research. Otherwise, if you are comfortable with the plan, go for it.
Sue

Jump to this post

Your description of what his wrong with this person...is identical to my problems. On a C T it shows nodules of Mycobacteria Arpense////I'm not feeling any better with these medications after 1 and half. the side affects of these meds are dehabilitating.

REPLY
@barbbauer

Your description of what his wrong with this person...is identical to my problems. On a C T it shows nodules of Mycobacteria Arpense////I'm not feeling any better with these medications after 1 and half. the side affects of these meds are dehabilitating.

Jump to this post

Yoir id md can do labs to determine uptake of meds. Getting results takes few days. My pills werent absorbing well into blood stream, i was switched to liquid, then after a month i finally was starting to feel better, bit by bit. Its very slow recovery

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