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Newbie - Why won't the doctors listen???

 
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mother22angels



Joined: 22 Jan 2013
Posts: 2
Location: Fresno, CA

PostPosted: Sat Jan 26, 2013 1:05 am    Post subject: Newbie - Why won't the doctors listen??? Reply with quote

Hello Everyone! Thanks for reading my story...

This has been going on for more than 2 years now. Back when we were renovating our backyard, I started getting rashes all over my legs, arms, and abdomen. I went in to the doc thinking it was lymphoma (cause I had several swollen lymph nodes) and I was previously diagnosed with thyroid cancer in 2009 and was concerned it might be back again for the 3rd time. Went to a hematologist and he ran blood work for Valley Fever, and also sent me in for a PET scan. PET scan came back negative for cancer, but the blood work showed that I was 1:2 positive for VF. However, I guess the infectious disease doctor didn't think it was worth treating and thought I would heal up on my own. Throughout these two years I've had several sinus infections, several ear infections and also pain in my left ear caused by fluid buildup putting pressure on my eardrum. I've developed a few more swollen lymph nodes on my left side of my neck that became worrisome to me. However, my doctors thought they were swollen due to infections. I've done my research on chronic sinus infections and come to the conclusion that a high percentage of chronic sinus infections are caused from a fungal infection. I've mentioned this each and every time to my doctors (I've seen two different general pract. over the two years, and a couple docs from urgent care) but they shoved my research to the side quite fast. Back in the beginning of December 2012 I had another sinus infection and ear infection. The doc put me on a month of Avelox, wanted me to take Prednisone along with it. I took the Avelox for 2 weeks, but didn't have any relief at all, so I discontinued the medication (just knowing in the back of my mind that it was probably fungal and the antibiotics wouldn't touch it with a 10ft pole). Well, about 2 weeks ago, I started experiencing severe bruising and pain in my ankles and they were also swollen. I decided to go into the ER, cause I just knew it was VF again, rearing it's ugly head! Sure enough, the ER doc took one look at my legs and said, "How could you not see that this is VF?" They ran a head CT and a chest Xray in the ER to see if the VF traveled into my lungs or into my spinal fluid or brain (meningitis). Thank God the CT and xray came back clear! However, they sent me home to call the infectious disease doc to make an appointment to see him. I have an appointment Monday with him. I have also seen a new doctor in town that is listening to me and taking my opinions and research into consideration. She's actually taken my blood to test for VF, she's also done a complete blood panel on me (looked at everything!). I am vitamin D deficient (really bad), and she took more blood to see if I have an autoimmune disease. I've thought for a long time that I had problems with my autoimmune system (hence the thyroid issues) but the fact that I've been sick for so long is a clear sign that there just might be something else! So, I'm waiting on the blood tests to come back. It should be a couple days for the autoimmune disorder bloodwork to come back, but a couple weeks for the VF results.

OH, and to top it all off, Tuesday I went in for another CT with contrast for the evaluation of the swollen lymph nodes in my neck (which came back as no change in the nodes) but I had an allergic reaction to the contrast and I've been covered from head to toe with a nasty rash that appears, disappears, and reappears in a new location. I really think it should be out of my system by now, but if I have an autoimmune disorder, then it would be harder for my body to fight off the allergy. OR it's just VF rearing it's ugly head even worse. Oye!

That was WAY longer than I think you were wanting. LOL Sorry. But that's my life in a nutshell. I just really wish I could get to the bottom of all of this, and fast! I'm getting really impatient.
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susan ulmer



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

PostPosted: Sat Jan 26, 2013 11:57 am    Post subject: Reply with quote

Hi. So sorry you have joined our club of people with VF symptoms that don't seem to fit a known pattern and are consequently mostly ignored. I will tell you this, my mother died as a result of VF settling into her sinuses and eventually eating into her brain. I agree with you totally about the cause of many sinus infections and have found that I am usually a voice shouting in the wilderness as well. My sinuses are gone and VF is trying it's best to eat off my face. The doctors I talk to think I'm nuts and I am terribly frustrated, as are many of us. At the moment I have a pain going from my jaw, through my ear, to the top of my head which I think is fungus related. I am deaf in that ear from the VF making a home there. The doctors just pat me on the head because there is nothing resembling this in any of the information they have on VF.

I just mention this so you won't feel so alone in your "peculiar" symptoms. I never find that playing "mine is worse" helps anyone but sometimes knowing that you are not alone..despite the fact you are made to feel that way..helps with the fight. I also "enjoy" the "rash" but have changed my soap and use baby wipes constantly to keep any dust off my skin because dust burns like fire and will cause the rash to become worse. This and an oatmeal based cream and a careful choice of clothing..none is best but that's really not an option. LOL. For me, the rash develops in any area where skin, cloth, and sweat meet.

I hope the doctors can find a direction to take in helping you and I think you must be extremely grateful that this is not a return of your cancer but in it's own way it is worse because no one has developed a standard successful treatment..unlike cancer where they have developed a protocol.

If you haven't gotten it so far, you might buy the VFEpidemic book which could help you as could the dietary advice from Dave and Sharon...there is new info on the VFS Youtube channel...Sharon's prescription is to limit sugar and eat nutrient-dense foods which seem to really help your body to fight off the growth of fungus.

I hope your coming visit to the doctor is a success and please know that we stand behind you...believing every word...a cyber army of people sharing the same mystery of VF and hoping like you, to find that magic doctor that will help.

All the best,
Susan
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mother22angels



Joined: 22 Jan 2013
Posts: 2
Location: Fresno, CA

PostPosted: Sat Jan 26, 2013 6:12 pm    Post subject: Reply with quote

Susan, thank you so much for reading my post and responding. I am so sorry to hear of your mother passing from VF and your current complications also. Thank you for sharing your story. It really helps me to feel that I'm not going nuts imagining all these things going wrong with me. I am going to have to get that book you were referring to, seems like something I really need to read. Also, who are Dave and Sharon? Are they members on this board? and where could I get their dietary advice?

I am so frustrated, I am only 36 years old, have two children ages 9 and 7 and I'm also going to school full time to become a Medical Assistant (I'm supposed to graduate in July 2013) but VF is starting to consume my life. I spend most of my free time in bed sleeping, when I would much rather be interacting with my family. I am up for educating myself as much as possible on VF so that I can hopefully gain a little bit of an upper hand on it and hopefully not let it take over my life any more than it already has. So, any information on VF or diets is MUCH appreciated! Thank you so much!
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susan ulmer



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

PostPosted: Sat Jan 26, 2013 7:49 pm    Post subject: Reply with quote

Hi. All this must be so difficult for you. You've come through your cancer, just to have this start. You have a lovely full life and this pile of **** gets dumped right in your path. However, you sound like a fighter and that is the first step toward winning this awful battle. Everyone here knows your struggle in their own way. We all try to support each other with tips we have found useful and just plain moral support...which helps all of us. Please stay in touch and let us know how it is going for you. Sometimes when it seems no one knows or believes what you are talking about, we do and that can be a great help.

Dave and Sharon Filip are our loving hosts on this site and the authors of the book I recommended. Sharon almost died from VF years ago. She recovered and afterwards she and her son have dedicated their lives to helping those of us still in the throes.

I'm not all that great with the internet but I think if you go to youtube/Valley Fever Survivor, you can get to the videos. If I'm not exactly correct, some combination like that will get you there...you're young and know these things. LOL. I, on the other hand, am old and this "interweb" stuff is sometimes above my pay grade.

You can email Sharon directly with your questions at voiceforaction@valleyfevorsurvivor.com. Sharon generously shares her wisdom and good advice and will be able to lead you to the videos as well as answer specific questions with amazing insight into VF and it's effects. She has kept her VF under control for years and is a staunch advocate of a healthy lifestyle to keep it at bay. She has encyclopedic knowledge on strengthening the immune system and boosting energy through diet...as long as you give up sugar, you can stay on her good side. Ha!

She and her son know more about VF than most doctors and hopefully some of their knowledge can and will help you.They are lovely people and always have time, not only to share their knowledge but to research specific questions you may ask if they don't have an immediate answer.

Thank you for your kind words.
All the best,
Susan
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jzirzow



Joined: 28 Apr 2013
Posts: 25
Location: scottsdale, az

PostPosted: Sun Apr 28, 2013 3:11 pm    Post subject: Reply with quote

I think this is often misdiagnosed or overlooked by doctors with devastating consequences. Like yourself I was diagnosed with vf in 2009 but not treated because of low titers. In July of 2012 after years of complaining of shortness of breath, fevers, and rashes I had a ct. The ct was devastating showing a large cavitary lesion of my right lung. After no response to antifungal I had partial lobectomy in Oct. Unfortunately it has since spread to my left lung and battle reoccurring lesions. I will see Dr. Galgiano at valley fever center in phoenix this week. He is the expert on vf from what I hear. The disease is frustrating enough but when you present without the cookie cutter clinical picture of valley fever it seems to be overlooked. I wish doctors would take more time to understand this disease. I am a nurse and have seen vf befire and studied it but you never want to have it. You are in my thoughts and believe me you are not Aline in the frustration with medical care.
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Sat May 04, 2013 4:48 pm    Post subject: Reply with quote

I just wanted to add to something that you said about getting a head Ct scan for meningitis. I found out the hard way that the only way to find out if cocci has invaded your spinal fluid or meninges is with a lumbar puncture. My brother died of cocci meningitis after the doctor told me twice that it didn't show up in the MRI. Two other doctors told me later that it can ONLY be detected with a test of the spinal fluid itself. From your symptoms it doesn't sound like you have it in your meninges but you would want to know for sure as soon as possible and not wait as long as my brother had to wait.
Let us know how your appointment goes.
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God Bless you and keep you,
Kathy
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vf survivor 1



Joined: 17 Feb 2009
Posts: 48
Location: maui,hawaii

PostPosted: Tue May 21, 2013 5:57 pm    Post subject: praying for you... Reply with quote

I have battled this disease since the age of 16,im 52 now..mother of three boys and grandmother of 8 grandkids..last five yrs my vf desimentated...we will help you with any questions you have..and the book will help...praying for everyone going through this...it almost destroyed my life.......but im a survivor...Smile we have to have hope they find a cure..
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active desmentated vf for 5 yrs..
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