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How long untill I feel better? Or Will I ever?

 
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JaimeGNZ



Joined: 08 Apr 2009
Posts: 13
Location: Modesto, CA

PostPosted: Tue Mar 02, 2010 8:24 am    Post subject: How long untill I feel better? Or Will I ever? Reply with quote

Hello everyone, it's been a while since I posted anything. Im 35 year old latin man.. Its been a rough year for me. I got diagnosed with VF on 1/09, but had contracted it around 11/07.. I did not have medical insurance the entire year,(no one would cover me) I was going to a local low income clinic through the year. Needless to say they did not do anything for me. I finally have insurance as of January 2010, YEY..I had my first appointment with specialist and Im feeling really let down... He didt not seem to aks anything but the obvious questions. Nor did he instruct me to change anything or try anything new..He did however order a bone scan..And he increased my difloucan dosage from 400 mg/day to 800 mg/day.. I have been in so much paint this entire year. My entire body hurts all the time, I dont have any energy, and my stomach bloating was getting worse. The specialist said it wasnt the difloucan, so he sent me to a gastro/intestine specialist, his results came out fine.. Recently I made the decision to go back to the gym wether I was in pain or not. I decided to trade my regular body aches n pains for work out soreness..But I dont know how much more i can do, my knees feel like they are going to give up n swell ..my upper hips hurt so bad if i walk on treadmill.. I still dont have much energy.. I have an appointment with my specialist next week..Do any of you have anysuggestions on what to ask him?? Also, how lung to I start feeling somewaht better? Or do we ever?
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Take care,

Jaime Gonzalez
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Budster



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

PostPosted: Tue Mar 02, 2010 8:43 am    Post subject: Reply with quote

Jaime, I feel your pain, especially the hips! I would caution you about too much exercise as elevated body temperature can help the cocci do it's damage. Every ones body is different so when will you feel better? Very hard to say. I mentioned that my hips bother me, well I have had VF since 06/2000. Read others stories here and formulate some questions that pertain to your body then ask the Dr. If they can't answer get another Dr.
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Warm Regards,
Jerry

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



Joined: 03 Jan 2010
Posts: 7
Location: Fresno, CA

PostPosted: Sun Mar 21, 2010 1:59 pm    Post subject: Reply with quote

Hi Jaime,

I just accidentally deleted the long response that I had written you- without saving it!
Here it goes, again
I am very sorry to hear that you have gone through all of that, and continue to have symptoms. VF can be such a devastating illness. I pray everyday for a cure.
I am so thankful for this website, as I know that I am not alone.
I also went for some time without health ins after my diagnosis, and am trying to go to the gym again to keep some normalcy in my life.
I too, still have symptoms 4 years after my diagnosis. One question that I have for Sharon and everyone else who reads this: Is it possible to have chest pain from VF 4 years after having an acute form of VF? Is the pain a cause for concern if xray reveals nodules have not changed in size, and titer levels are normal?
Wishing you all the best!
Shelly
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vfs_admin_Sharon
Site Admin


Joined: 19 Dec 2004
Posts: 99

PostPosted: Mon Mar 22, 2010 7:52 am    Post subject: Reply with quote

Hi RoxyGirl,

Chest pain is not good! It could be unwanted fluid or another issue caused by VF. When you mentioned a "normal" titer, but if you have any titer above zero that would indicate an ongoing infection.

Unfortunately if someone asks whether VF can do something years later, whatever that something is, the answer is almost always yes.

Also, with apologies to Budster, he wrote with good intentions but his information about an exercise-related increase in body temperature having any effect on cocci is incorrect. Someone on this board wrote that a few years ago and believed it to be true but it is nothing more than a myth. Human body temperatures are extremely stable. The stress of overdoing exercise or the stress of extreme temperatures could set you back but only because of the stress itself. Many VF patients require exercise as a part of physical therapy or to help recover from fatigue.

Sharon Filip
Founder, www.valleyfeversurvivor.com
Co-Author of Valley Fever Epidemic www.valleyfeverepidemic.com
Sign up for the VFS E-Newsletter at www.valleyfeversurvivor.com/enews.html
Join a Valley Fever Survivor Support Group at www.valleyfeversurvivor.com/vfssg.html
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RoxyGirl



Joined: 03 Jan 2010
Posts: 7
Location: Fresno, CA

PostPosted: Fri Mar 26, 2010 5:35 pm    Post subject: Reply with quote

Hi Sharon,

My titer levels are 1:1. I am told that the Valley Fever is not considered "active" at that level. Is that true?
I had considered that the pain was due to an absess or some type of fluid at one time, but the recent xray that I had showed that the two nodules that I have in my lungs are the same size that they were 3 years prior. At that I no longer know what to think.

The xray that I had was very detailed, but would that show if there was some type of fluid?
Are there any other tests that you know of that could confirm/rule that possibility out?
Thank you so much for taking the time to read and comment. I cannot reiterate enough how much it means to me to feel listened to Smile
Warm Regards,
Shelly
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vfs_admin_Sharon
Site Admin


Joined: 19 Dec 2004
Posts: 99

PostPosted: Tue Mar 30, 2010 10:16 am    Post subject: Reply with quote

Hi Shelly,

If your titers are above zero it still means your body is producing antibodies for VF. That is often an indicator that it's still active even though it is barely detectable. Only your doctor can decide whether it is believed that your nodules are stabilized at that size or whether antifungal medication might have a chance to shrink them further.

You also asked if fluid could be seen in chest x-rays and the answer is yes it can. I am truly sorry that you are still not doing well.

Sharon Filip
Founder, www.valleyfeversurvivor.com
Co-Author of Valley Fever Epidemic www.valleyfeverepidemic.com
Sign up for the VFS E-Newsletter at www.valleyfeversurvivor.com/enews.html
Join a Valley Fever Survivor Support Group at www.valleyfeversurvivor.com/vfssg.htm
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claudia c



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

PostPosted: Tue Mar 30, 2010 2:37 pm    Post subject: Reply with quote

I am sorry you are still not feeling well but it is not surprising I'm sorry to say. There have been instances in my long course of having VF where my titers were basically non-existent yet I was still sick and had active cocci. My doctor told me at one time if the infection is walled off it can make my titers very,very low. They don't even do that blood test on me any more and haven't for quite some time. For me, it has not been a completely accurate diagnostic tool. Please try not to be discouraged and keep faith you will get stronger. My best wishes to you, Claudia
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Robin Smith



Joined: 28 Dec 2004
Posts: 349
Location: San Diego

PostPosted: Sat Jun 05, 2010 9:04 pm    Post subject: Lessons . . . Reply with quote

Jaime,

I'm so sorry for your struggles. VF can be such a perplexing disease. God Bless you for your diligence. All that I can tell you is that our struggles will yeild their own rewards and that your doggedness will eventually find you better. It may seem that sometimes you will fall short and that your life will turn out to be less than it could be as you've imagined it. Please don't let this deter you and continue to have faith that somehow, you will be better someday. I almost lost my faith due to many comas and near death experiences in ICU. Eventually I landed in a wheelchair due to VF and as I reflect upon my experiences, I would not trade them for the lessons that I've learned. I'm now living the life of my dreams even without the ability to walk. If it were up to me, I would have your life restored to exactly the way that you've imagined it. Even then, I know that it would fall far short of the eventualities that the Lord has imagined for us. Hard to see now, I realize. Faith, my friend. We can't know the depth of the things that we don't know.

Blessings,
Robin
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