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Advice Please

 
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jessloyd820



Joined: 27 Feb 2014
Posts: 2
Location: Phoenix, AZ

PostPosted: Thu Mar 27, 2014 7:23 pm    Post subject: Advice Please Reply with quote

Hello! I was diagnosed with VF in January. I went to the dr with 5 very large bumps on the right side of my neck, constant fever and fatigue. The Xray showed no VF but a few days later the labs came back positive. I now see an ID dr here in PHX. I just had more bloodwork done to monitor my kidneys. But she is testing for other things like leukemia as well. I had the lumps biopsies and they came back negative. The first thing my ID dr asked was could I have aids. I have 2 kids and I'm married so my initial reaction was no way. And they test you when you deliver. She said it's odd for a healthy 27 yr old to be effected by VF so badly. She suspects an autoimmune disorder. I have been on 400mg fluconazole for about 2 months. I have good and bad days. Today is really bad, I had to call into work and sleep all day. I'm exhausted, feel like my lungs are heavy and just not myself. I also have a lot of pain in both ankles and sore tight muscles. I'm assuming this is normal. But I feel defeated. How do I keep up with 2 kids a husband and full time job with this:( I had pneumonia on top of it 4 weeks ago. Am I more susceptible to illnesses with VF? Any diets that seem to help?yesterday I was so dizzy all day and not thinking right, maybe this is the exhaustion? I just bought the suggested VF book and look forward to reading it. I am excited to be a part of a supportive group and would love some advice. I used to be so active and now just getting through the day is all I can do.
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susan ulmer



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

PostPosted: Fri Mar 28, 2014 8:37 am    Post subject: Reply with quote

Hi Jess,

..so sorry you have VF and are with us but hopefully, among all of us, someone has advice that will help you feel better and give you moral support. VF seems to suck the life out of our world but we learn to move around it and restore a semblance of our former lives. Not everyone has symptoms for years and I hope you are one of those people who can pound it into submission.

Most of us have gotten stupid, frightening, incorrect diagnoses..usually TB or cancer..I hadn't heard AIDS [how horrible for you!!!]...and I wouldn't let that scare you because as you move along this journey you will find a huge pile misinformation often buries the truth. I was sent to a shrink for explaining what was happening to me...You must be your best advocate and educate yourself beyond what you expect from the doctors because they really know very little about this disease which seems to strike everyone differently and can't be easily boxed up and gotten rid of with a "take two aspirins" diagnosis and involves dietary and lifestyle changes as well as anti-fungals .

If you go to the "Notes" section of the VFS Facebook page you will find many dietary suggestions that will help you regain your strength and repair your immune system. One of the most important things is to cut out sugar..which is always our go-to when we want a burst of energy but it gives cocci that same burst so it's important to cut it out. Dear Sharon at www.voiceforaction@valleyfeversurvivor.com is our diet guru and will be glad to help you with a plan to help get you on your feet as quickly as possible because with VF "you are what you eat" takes on a whole new meaning.

Sometimes the fluconazole has very negative side effects and sometimes it's worth checking with your doctor to see if she thinks an alternative anti-fungal may work better. The fluconazole[as are all anti-fungals] is basically chemotherapy and has many of the same side-effects. You must do what you can to mitigate them. Drink lots of water so your body processes the drug as quickly as possible and be sure you eat a nutrient rich, low sugar diet to keep you strong through this process.

I hope this was your last horrible day and you feel better soon. Please check the Facebook suggestions..they will help you...and contact Dave and Sharon at Voice for Action if you need special help.

All the best,
Susan
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Sheila



Joined: 29 Dec 2004
Posts: 240
Location: Reno, NV

PostPosted: Fri Mar 28, 2014 10:57 am    Post subject: Reply with quote

Hi Jess, sorry to hear of your vf, happy to know you have found support. Everything Susan says above is true, and most importantly you should join the facebook support group and VFS page where the Notes are. And yes, Sharon will help you, all you have to do is ask.

Your doctor is misinformed if he thinks being a young healthy person is a defense against this fungus. Maybe he should take a look at the hard labor prison workers in central CA who died from it. No-one is immune. You will find young healthy people on the VFS support group FB page. It's important to find others with similar circumstances, it helps to validate what you are feeling.

As for being more susceptible to viral/bacterial infections, the answer is probably yes. I am. When I am exposed to anything I get it, and now that I am (so much older than you), older, the infections last entirely too long. That's where being young and strong is in your favor, hopefully you will be able to handle these things.

Prevention is the key, as always. Talk with Sharon Filip, get on a good diet, take her suggestions to heart and follow them. In time you will find what works specifically for you, but you Must start somewhere. Diet is the key to prevention. And with your kids consider using those OTC prevention products. Lozenges with lots of Vit C and some wonderful herbs. Riccola puts out an herbal cough drop that works well too. Easy, tastes good. Perfect, no. Helpful, yes. Like Rest.

You Must rest. If your body screams out to you I Want to Lie Down Now! you Must pay attention or the potential is strong for the VF to get worse. It thrives in a sugary, exhausted environment. For all illness, the body Only Heals When Resting. When your energy is depleted due to foreign invasion, you can only put what's left to one use. Working is one use, Healing is a different use. You cannot do both at the same time. If you are feeling strong, you can work, if you are exhausted you might want to start thinking about how to handle everything with Rest being a priority. Take care of numero uno mom. On the airlines they show you how to pull the oxygen mask down for mom first, then child. If mom goes down, who will take care of the family. This paragraph goes under the heading of tough love.

Hope to see you on Facebook with some updates on your progress.
Sheila D
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Sat Mar 29, 2014 2:56 pm    Post subject: Reply with quote

Thank you Sheila and Susan for saying just about everything I could have said! Welcome to our community Jess.

All my best,
_________________
David Filip
Co-Founder of www.valleyfeversurvivor.com
Co-Author of "Valley Fever Epidemic"
www.valleyfeverepidemic.com
Join us on Facebook: www.facebook.com/valleyfeversurvivor
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jessloyd820



Joined: 27 Feb 2014
Posts: 2
Location: Phoenix, AZ

PostPosted: Sun Mar 30, 2014 8:41 am    Post subject: Thank you Reply with quote

Thank you so much for the responses. Reading them is very helpful and it's great to have others understand how I'm feeling. I will work on my diet and focus on getting the rest I need. Thank you:)
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