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Titer <1:2 But Still POSITIVE

 
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Tue Nov 20, 2012 8:44 pm    Post subject: Titer <1:2 But Still POSITIVE Reply with quote

Hi Everyone,

Well, most of you know I had my upper left lung lobe removed in early September, and my Titer Score immediately plummeted from 1:32 to <1:2. I've been testing <1:2 ever since, however, the blood tests also show "positive". This means that my doctor won't take me off these awful drugs. He wants at least a couple of months of "negative" and a clear chest Xray before feeling comfortable taking me off these drugs. I've been on diflucan @400mg/da since May, and my doctor projects that I should at LEAST be on them through March (or beyond if I'm still positive). He said this is particularly important since I continue (for now) to reside in West Phx Valley.

Here are my questions to you, my friends:

The infection was centered in my lung which was removed. I thought my goal was <1:2, but now there's this "positive" reading keeping me on drugs. Do these spores land somewhere or stay in the blood stream? Does "positive" mean active, and "negative" mean "dormant? If I'm negative and taken off the drugs, will I have at least built up SOME resistance since I do have to go outside at times? At least for the house I use air purifiers.
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susan ulmer



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

PostPosted: Wed Nov 21, 2012 7:32 am    Post subject: Reply with quote

Hi Linda! On page 89 of the VFE book, there is an explanation of the titer results as they apply to you. It says that when no antibodies are found in a <1:2 test, it is considered negative and when antibodies are fond in a <1:2 test it is considered positive. So I guess you have to wait until no antibodies show up in your test. <1:2 is still very low and you should congratulate yourself on the courage to get your surgery.

As much s you want to believe that Vf is behind you, I think you will be wise to follow your doctor's advice to continue taking the fluconazole, despite the side effects and your desire to believe you have stopped the Vf in it's tracks. VF never leaves your blood stream and although it it not always active, it is always there....You have so recently recovered from your lung surgery, I would think that exercising caution about stopping the meds would be the best choice for you. Continue to feel better!
All the best,
Susan
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Wed Nov 21, 2012 8:04 am    Post subject: Reply with quote

Thanks Susan. Now I'm sorry I gave my VF guide to mom to read, because I need to reread those parts.

I've already bought my scarves/wig for the long haul on this drug. The wig doesn't look too bad, even though it's synthetic and around $200. In fact, my husband never even noticed that I was wearing it the other day. Of course, as much as I love him, he may not be a very good test case. Very Happy

Good news is that I have NEVER shown outright symptoms of VF like many of you, and I'm recovering VERY well from the surgery. Except for the hair loss and the fact that I carry a mask when I'm outside, I'm getting back to feeling like a "normal" person. I'm actually able to think about other things than VF.
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Sat Dec 01, 2012 3:37 pm    Post subject: Reply with quote

I visited my infectious disease doctor for the first time yesterday. He's pretty familiar with VF because he's practiced in Phx for 11 years. My pulmonary doctor referred me to him to see if he can give me further guidance. Well, he said things that are sort of contrary to what I thought I knew. I asked a huge number of questions and these are some of the things he said to me:

1. He said I may not have ANY VF AT ALL left in my body if it was all confined to my lung which was removed. He said the reason I could be positive may not be from "active VF fungi", but from the fact that it takes time for the body to stop making antibodies, even if the source of VF is removed. He wasn't at all concerned about the positive reading for that reason. He was more interested in the <1:2.

2. He said that I need to stay on diflucan (and thought it was the best for me) until we know for sure that there was no additional spread or remainder in my body. He said they would reduce the amount soon and watch to see whether the <1:2 raises up. If it does, then we know I still have a problem somewhere. He also wants to see a clear Xray or CT.

3. He said that diflucan was probably less effective for me because the lung mass was contained in a thick walled granuloma that was difficult to penetrate. He still thinks it's best for me NOW.

4. He said that mostly newcomers (only moved here 5 years or earlier) tend to get this, and that people who've lived here for a long time don't tend to get it. He said there is risk wherever you live (Hurricane, etc....I think he must have considered these similar in consideration?)

So there it is. My pulmonary doctor didn't say all these same things, but he also concedes that doctors simply don't know everything about VF. That's why he referred me to a specialist. I was surprised at some of the things said...especially item #1 above. If true (and I know it may or may not be!), it's hopeful in my case.
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susan ulmer



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

PostPosted: Sun Dec 02, 2012 6:46 am    Post subject: Reply with quote

Hi Linda! Remember the story of the blind men and the elephant? You, and the rest of us with VF, are the elephant.
All the best,
Susan
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Sun Dec 02, 2012 10:05 am    Post subject: Reply with quote

I'm laughing thinking about that story now, Susan.

I don't know what's worse...the disease and it's ramifications or the additional confusion that different medical opinions add. You would expect an infectious disease specialist in this area to know more than a pulmonary doctor about this, but I tend to believe my pulmonary doctor more. He seems far more cautious, hesitant to cut back diflucan, and not so reassuring that VF is totally gone if only contained in lungs which are removed. He's also expressed that I could reinfect myself here in AZ (even though I'm here 7 years now). I didn't walk away from the ID doctor feeling that he really knew everything about VF. It was disappointing. Besides the above, he told me I could have become infected 4 years ago for all we knew. Now, I thought that VF manifested itself and grew fairly quickly.

Sorry for the bill, Medicare. It wasn't worth it.
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rain81



Joined: 02 Apr 2012
Posts: 6
Location: AZ

PostPosted: Wed Dec 19, 2012 6:37 pm    Post subject: Reply with quote

My titers were never more than <1:2 no matter how terrible I felt with VF the past year since being diagnosed with it. It is my understanding that no matter what, traces of it will always remain within the bloodstream but not necessarily be active. I've lived in AZ all my life and work near Surprise. Anyone can get VF and have it affect you. I am in my 20s and am a living example. Best of luck with the docs!
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LindaA



Joined: 07 Jun 2012
Posts: 65
Location: Surprise, AZ

PostPosted: Tue Feb 19, 2013 10:06 am    Post subject: Reply with quote

Well, here's an update as of this week. I've finally tested "negative"! That means I've gone from 1:64, lung lobe removal, 400mg fluconazole/day to <1:2 for 6 months, and now finally NEGATIVE.

BUT....my doctor's office said I'm still "reactive". Now, what exactly does that mean? I thought he said I'd always show as reactive because I've had VF.

Side note, my brother called me today from Calif Central Coast and said that they had a special program on TV re: VF mentioning 279 REPORTED cases in his area. Way above Santa Barbara area because of the deserty dry areas surrounding the Central Coast, Paso Robles, etc. The program mentioned the Phx area and Bakersfield area as hotspots. It's good to get this kind of education about the illness out there. My brother had never even heard about a case before me.
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Tue Feb 26, 2013 3:23 pm    Post subject: Reply with quote

Sorry to be so late to replying! So many things are happening at the same time that I'm a bit too slow on the board.

Quote:
BUT....my doctor's office said I'm still "reactive". Now, what exactly does that mean? I thought he said I'd always show as reactive because I've had VF.


To the VF skin test that would be true. It may not be true for the blood tests; in fact, testing of blood titer antibody levels is often done for the sake of seeing whether fewer antibodies are being made, since that often indicates people with VF are getting better.

Best of health,
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