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Low titers, extreme reaction to VF.

 
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Lzbthg



Joined: 24 Jan 2014
Posts: 4
Location: Bakersfield, CA

PostPosted: Mon Jan 27, 2014 10:35 pm    Post subject: Low titers, extreme reaction to VF. Reply with quote

Hello! I am new to the VF Survivor site and very thankful that it is here!!

I was diagnosed with VF in late November, 2013. After the positive VF blood test I was placed on posaconazole due to the severety of the onset of my symptoms. However my first titer was 1:2, with my second being 1:2, and my third 1:2. My doctor orders the titer labs every five weeks.

During my last visit my doctor stated that my titers were not going to get any better and she was sending me back to my general practitioner. Since she is an infectious disease doctor, I was not comfortable with that decision. My symptoms still exist (less the high fever), including night sweats, rashes, nodules, extreme fatigue, mild chest pain (X-ray now shows clear), Joint pain (mostly knees), weight loss, and nausea.

My first questions are in regards to the low titers. Has anyone had low titers and felt the extreme symptoms? Were your doctors supportive or dismissive? I feel as though I am being dismissed even when I explained my concerns. She even suggested that I return to work and I know that I am not capable of working right now.

Any input would be appreciated.
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 254

PostPosted: Tue Jan 28, 2014 3:11 pm    Post subject: Reply with quote

Hi. There are many who have felt strong symptoms without having high - or even any - titers. It certainly sounds like you may need medical care or at the very least ongoing medication or monitoring. The titer tests are an indication of the level of VF infection but do not give anything close to certainty of what is going on.

If you know you are not capable of working now you need to speak to a doctor who will listen to you about your concerns. When calling new doctors, talk to them (or at least their offices) about your specific scenario so that you can be more assured that you will find a new fit. You had mentioned nodules but even though the chest x-ray is clear you need a doctor who is willing to consider your ongoing symptoms.

All my best,
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susan ulmer



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

PostPosted: Tue Jan 28, 2014 8:18 pm    Post subject: Reply with quote

Welcome..I just wanted to say that your titer only indicates how many antibodies your body is producing to fight the VF. It doesn't mean you are producing enough to defeat it. I am as usual disgusted with a doctor who throws up her hands and decides she doesn't want to bother with you because she can't "cure" you in a few months. This sadly isn't abnormal behavior from doctors who mostly have no idea about the ramifications of VF and get their knowledge from outdated publications and general ignorance. You are certainly not alone and you definitely need a new ID doctor who actually understands what you are going through.

Most of us have symptoms out of line with our titers although, sadly many of us don't. What you are going through is pretty normal and hopefully will diminish with time. It is certainly not the time to stop the anti-fungals but it is time to shop for a new doctor, as Dave said. One of the really necessary things to do with VF is get enough rest and reduce your stress.

I hope you can do this and feel better soon [soon is a relative term with this disease]. Not everyone goes on with it for years but it's important to jump on it and do the right things quickly. Please avail yourself of Sharon's dietary suggestions because with VF "you are what you eat" takes on new meaning. I believe her suggestions are in the "Notes" section of the VFS Facebook page.

All the best,
Susan
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dank



Joined: 04 Dec 2011
Posts: 26
Location: Fresno, CA

PostPosted: Wed Jan 29, 2014 11:34 am    Post subject: Reply with quote

Lzbthg,

I took ill August 1, of 2011. Did not go to the doctor for three weeks because I thought I had the flu and it would go away. When I went to my primary Doctor he was testing me for a diagnosis he sent me for a chest ex-ray and it was clear. My Doctor was leaning toward a stomach ailment because I did not have fever and my lungs were clear according to the ex-ray

To make a long story short I ended up in the hospital emergency. Staff took a CT of my stomach area. Stomach showed clear but they caught the bottom of the lungs on this exray and nodules were present. Then took a blood test for titer. Then took another CT a couple days later and it showed a bunch of nodules plus the titer results came back 1-16. In my case the Xray did not show valley fever, but a CT test picture showed it thriving.
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Lzbthg



Joined: 24 Jan 2014
Posts: 4
Location: Bakersfield, CA

PostPosted: Fri Feb 07, 2014 6:02 pm    Post subject: Reply with quote

Thank you for your support and replies. I've contacted my insurance and they are in the process of outside referral however it will be a "contract" provider and not a provider of my choice. I have been researching physicians and found some who are very active in working with VF research. I am disappointed that I can't select the doctor and am thinking of changing my insurance.

I will say this again, I don't know where I'd be without the VF Survivors page!
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