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Another Newbie

 
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Gretta



Joined: 01 Oct 2012
Posts: 6
Location: Phoenix

PostPosted: Tue Oct 30, 2012 4:34 pm    Post subject: Another Newbie Reply with quote

Hello all,

I'm very happy I found this website. So many of my questions have been answered here I feel like I should add to the store of knowledge and personal stories since there is so little for us all to go on.

I'm very fortunate to have been diagnosed pretty quickly after I had a chest x-ray for coughing specks of blood in 2004 (those specks turned into much more later of course). After the usual TB scare my pulmo put me on 800mg diflucan even with a negative VF test AND he didn't feel the need to poke it for any reason. He just had a very strong hunch that it was VF. Bless his heart. 8 months later my nodule had shrunk mostly, I was off the medicine and didn't give it another thought until...

Fast forward 7 years to 2012. A couple of months after a broken hand I felt the dreaded "lead legs." As most of you know, NOTHING feels like that. I feel like the VF resides in my quadriceps. I seriously have a very hard time walking. The insomnia also returned along with the night sweats, bleeding gums, dry cough, and shortness of breath AND I coughed up a little bit of blood for the first time in years. Only once though, but I'm pretty sure it wasn't from sinuses or something. Oh and brain fog...good lord

My beloved pulmo had retired, but these guys got me in after only 2 days. Again I tested negative, and again I was given the magic little pills anyway plus a CT. 400mg for 2 weeks and 200mg for six weeks, After 5 days I was starting to feel the improvement. I was starting to be able to do almost 100% of my job, even though I was only feeling about 75%. I came down with a run of the mill "crud" right when I was coming off the meds so of course and I was concerned that I wouldn't know if I was still improving. I needn't have worried. It was very easy to tell the difference between a cold and VF.

Unfortunately six weeks wasn't enough because about a month after being off the meds (now) I'm sick again. I came on fast. For about 3 days I was REALLY thinking my legs were going and then 2 nights of sweats, chills and insomnia convinced me. I put a call into the DR. who called in some more diflucan.
Now keep in mind I never saw him again after the initial appointment and never even heard about the CT scan results. Obviously they want to see me now so I have an appt. scheduled. He only gave me 200mg a day for 30 days and I don't think he knows how to proceed really.

I thought I would ask you guys. My body was able to keep it at bay for a long time so I'm hoping I can do it again. I don't know whether going on and off the meds will give the VF an edge, or if I should hit as hard and heavy as he'll let me (the Dr.), or take as little meds as possible. Thirty days wasn't enough before, but I'm not as sick this time so?

I feel so bad for all of you who are so much sicker than me. Thank you for letting me rant. BTW I have a good friend who also relapsed this year. Must be in the air --haha--NOT.

Take care,
Christi
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claudia c



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

PostPosted: Wed Oct 31, 2012 1:00 am    Post subject: Reply with quote

Hi Christi, reading your story makes me think of some of my treatment when I relapsed with VF. What I can suggest is finding a new pulmonologist who knows all about VF. There really is no excuse for this doctor not to know much about the disease if he practices in Phoenix. The last presciption he gave you sounds woefully inadequate. Also you have to fight for yourself. You need to know the results of your CT scan. Seeing an i.d. doctor is a good idea as well. Again, any i.d. doctor worth his or her salt in Phoenix should know about VF. A nodule in your lung is nothing to mess around with. If it shows no growth on your CT scan you are suppose to have the results from, that's great news. I would still want to have a meet and greet with a new doctor. You can relapse and have the nodule start increasing in size at any time. I only have one lung as the result of one small nodule wreaking havoc. Please be strong and make sure your health care needs are being met with the right doctors. I wish you the very best, Claudia
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JeanK



Joined: 17 Jan 2012
Posts: 42
Location: TUCSON

PostPosted: Thu Nov 01, 2012 8:40 am    Post subject: So glad you posted Reply with quote

Hi Christie,

So glad you posted. As far as your question, it seems to be a "crap shoot" for each of us regarding out next step. For many here, it turns into a continual search for the right doc for a cure, for others, they just take it as it comes and follow the orders of the medical professionals they are guided to when symptoms get challenging. For me, I just take one day at a time and realize that I'm pretty fortunate that my symptoms are not interfering with my ability to care for my husband, love my family, or appreciate my surroundings.

It seems that there are no rights or wrong ways to handle this fungus or definite route it going to take for all survivors. But there have been some really amazing posters on this site that really follow Joseph Campbell's path of the hero's journey as they continue their life in spite of some pretty rough symptoms.

So, my hearts with you as well as my friends in NJ dealing with Sandy.

Take care, Jean
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Gretta



Joined: 01 Oct 2012
Posts: 6
Location: Phoenix

PostPosted: Fri Nov 02, 2012 4:10 pm    Post subject: Reply with quote

Thanks for the replies. The pulmo called and said the CT was clear and there was no sign of anything active. I see him on the 6th. I am expecting him to tell me that there is no reason for him to be treating my and since there isn't anything "active" then I don 't need the meds. I hope I am wrong. I need a new PCP...anyone know of one in North or West Phoenix that might give me a few months worth even with negative blood and no new lung activity? Or off to Mexico I guess if it comes to that. Even my husband doesn't think I know what I'm talking about. Rolling Eyes
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JeanK



Joined: 17 Jan 2012
Posts: 42
Location: TUCSON

PostPosted: Sat Nov 03, 2012 8:49 am    Post subject: Reply with quote

Christie,

Did you check Infectious Disease Doctor West Valley Phx under Valley Fever Discussions at the bottom of this page?

Unfortunately, many sufferers of valley fever have family and friends that don't understand why we have so many confusing symptoms and as a result, consider us "wankers". It's even sadder when the medical profession doesn't even bother to check out possible debilitating conditions in their local areas that have been around for so many years.

I suspect that part of why I'm doing as well as I am is because of having an honest pulmonary specialist that admitted that there was no cure at this time and limited my sessions with the VF meds--but I could be wrong but I seriously doubt it.

Jean
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Gretta



Joined: 01 Oct 2012
Posts: 6
Location: Phoenix

PostPosted: Sat Nov 03, 2012 10:12 am    Post subject: Reply with quote

Thanks Jean...I found it.

I am also wondering if it is usual for them to draw blood one day and be able to pronounce you negative the very next day?

I've been reading the UofA tutorial for physicians and it plainly states a negative serum result NEVER excludes the presence of cocci and that one or even two more tests should be given. I was given one test. Why do docs ignore this stuff?

I'm worse today after 4 days at a pitiful 200mg a day. Last time I was feeling better after 5 days at 400mg daily so I upped my dose today. I hope it kicks in before my appt. on Tues. (3 days at 400)so I can have a little more empirical evidence.
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claudia c



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

PostPosted: Sun Nov 04, 2012 1:21 am    Post subject: Reply with quote

Hi Christie, I have never had my lab come back that quickly! I think seeing an infectious disease doctor and bringing your records or having them faxed would be a good idea. Call me paranoid but I would want to have that evaluation before being taken off of the antifungal medication. Did the pulmonary doctor mention anything about having periodic ct-scans to make sure there wasn't any new growth? Did he mean the lesion completely disappeared or was it still there but showed no new growth? I hope you start to feel better soon. Take care, Claudia
p.s. there are many spouses out there that don't get it. You're not alone on that one!
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Gretta



Joined: 01 Oct 2012
Posts: 6
Location: Phoenix

PostPosted: Wed Nov 07, 2012 11:51 am    Post subject: Reply with quote

Well, my pulmo doc was really very good at trying to not tell me outright that I'm a lunatic Smile He said he's willing to work with me on the meds but be really wishes it was more clear cut. He usually has people in with many more symptoms as evidence when they test negative. He kept asking about more symptoms, and yes I hurt in various places everyday but most things pass. At the moment there is the normal amount of back and muschle aches but that stuff started long before VF. I didn't want to start sounding like a hypochondriac. My empirical evidence that the flucon works every time to allow me to walk is good enough for me. I hope to god I'm not actually succumbing to a placebo effect.

He did manage to confuse me when I asked why only one test, and hasn't said anything about liver tests so I'm going to just rely on him for the drugs and find a PCP who is willing to at least some basic monitoring. I have a biometric screening in two weeks with my employer so that's handy.

Claudia...I did just have a CT that showed the nodule had not grown over 7 yrs. Man how often do you want to do those things anyway?

Be well,
Christi
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susan ulmer



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

PostPosted: Wed Nov 07, 2012 2:46 pm    Post subject: Reply with quote

Hi Christi, I'm one of those people who has had to fight to have my diagnosis of VF recognized. Empirically, anti-fungals reduce my symptoms while nothing else does. Getting those anti-fungals has entailed trips to Mexico and the feminine hygiene shelf in the drugstore for a cream I use on my face. I just finished having a terrible pain in my ear. Although the doctor gave me cortisone, I put anti-fungal cream in my ear instead and now it is better.

It is strange to fight for a VF diagnosis because that means you have something incurable but you won't feel better unless you are correctly diagnosed. I hope you can get the right people in your corner and that you feel better soon. Keep fighting for what you believe and make them prove you are wrong, rather than the reverse. Good luck!
All the best,
Susan
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claudia c



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

PostPosted: Thu Nov 08, 2012 2:57 pm    Post subject: Reply with quote

Hi Christi, I'm so glad your CT scan came back showing no growth. That has to be such a huge relief. I think I would want my lung checked once in awhile though. My case of VF that caused the spot probably happened in the late 80's. VF did come back to life about 10 years later for me. Best wishes to you, Claudia
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Gretta



Joined: 01 Oct 2012
Posts: 6
Location: Phoenix

PostPosted: Mon Nov 19, 2012 2:38 pm    Post subject: Reply with quote

I'm going to update here because I'm not really keeping any kind of log like I should Very Happy

I was getting a little worried 'cause I wasn't bouncing back as quickly this time once on the meds. Last time it took about 5 days to start feeling a difference and about twice that long this time. Work forced me to overdo it more so that might have something to do with it. And then the SLOW ascent upwards. Must remember I'm not 100%!

I'm doing 200mg every 18 hrs to stretch my meds until my insurance will pay again. This seems to be ok. Dry lips and hair (losing some). Tons of water seems to help a lot.

If only I knew how long until I can get off the magic pills. I am terrified of even trying now.
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