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Normal titer results with active Valley Fever

 
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claudia c



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

PostPosted: Mon Jun 20, 2011 12:48 pm    Post subject: Normal titer results with active Valley Fever Reply with quote

I spoke with my I.D. doctor this morning. I had routine lab done and also cocci titers. For the past several years while VF was raging in my lungs my titers were always normal. However, other lab tests showed that I was pretty sick. It has been a little over a year since the rest of my right lung was removed. Again, my current titers remain unchanged.. My doctor said that it isn't unheard of to continuously have normal titers when you have active VF but it is very unusual. I am just posting this in case there might be someone out there with somewhat normal titers but still feeling sick. I pray for the victims of Valley Fever and also those who have lost loved ones from this disease. My best thoughts and wishes go out to you. Claudia
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SandysMom



Joined: 21 Jun 2011
Posts: 6
Location: Palm Springs, CA

PostPosted: Tue Jun 21, 2011 8:11 am    Post subject: Reply with quote

I live in Palm Springs which is an exceedingly wind-blown desert area. For the past 13 years, I have been getting progressively sicker, exhibiting all but a few of the symptoms of Valley Fever. I've been tested (negatively) for Rheumatoid arthritis, lupus, pneumonia (which I had 20 years ago), bronchitis, COPD, and a lot of things named after people. Blood tests, x-rays, CAT/PET/MRI scans, you name it. But it doesn't matter how many times I bring it up to any of the over two dozen doctors I have seen; NONE of them will test me for VF. "Oh, you couldn't possibly have THAT!"


I am now essentially house bound most of the time; how do I get a doctor to listen? What do I do now? I'm over 60 and am awfully tired of being sick.
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susan ulmer



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

PostPosted: Tue Jun 21, 2011 10:35 am    Post subject: Reply with quote

I agree, it's unbelievably stupid that no one will do a Vf test. Th order is a few words on a piece of paper. I don't get it, the lab does all the work and you personally can read the results. My suggestion is that you try an urgent care clinic. They seem to be less structured in their protocols and a doctor who never expects to see you again might just write the order and then you could have an independent lab perform the test and send the results to your actual doctor and go from there. I share your frustration. The whole thing is ridiculous, it's like "go ahead and die" if that's what you have...we certainly won't check. All I know is that you are certainly not alone in your struggles to get tested. It's easier to get an AIDS test than a test for VF.
All the best,
Susan
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claudia c



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

PostPosted: Tue Jun 21, 2011 11:21 am    Post subject: Reply with quote

It makes me sick and disgusted at the arrogance and unwillingness to rule out Valley Fever by many in the medical profession. Over the past twenty years I was tested for TB, treated for "bacterial" pneumonia, diagnosed with asthma (untrue) and numerous CT scans and chest x-rays. My lung cavitation was from exposure to VF as a child. Nothing to worry about. Cavitation grows slowly and my health deteriorates. Since my titers have always been "normal" that caused further confusion. It took years to finally get hooked up with doctors that were very concerned about me. From the beginning they had conferences with their peers and out of state experts in Arizona and California. Unfortunately the cavitations (yes it grew) were resistant to fluconazole. Ultimately I had three lung surgeries. I will always wonder if I was diagnosed and treated years ago what life would be like today. I have never been so sick and incapacitated. Sometimes I still can't believe everything that has happened. Why was I the only one in our family to contract VF. We all lived in Phoenix. Wrong place, wrong time. What does it take to get some lab tests just to potentially rule out VF????? Is it arrogance that a doctor in an endemic area won't listen about VF???? It is so difficult to fathom and I read over and over how people on this post are dismissed with their concerns and symptoms. My heart breaks. Try to be courageous and demanding even if it isn't in your nature. Have an advocate go with you for support. You all are in my prayers. Claudia
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SandysMom



Joined: 21 Jun 2011
Posts: 6
Location: Palm Springs, CA

PostPosted: Wed Jun 22, 2011 9:53 am    Post subject: Reply with quote

I too have been treated for things I didn't have.....to the point that, now, anti-botics have little or no impact on me.

As to the "why-me" question: I DID have bacterial pneumonia in 1990 and my lungs were compromised which is why I think I was "the chosen one" amongst all my friends who've lived here FOREVER. But then again, many of them have been diagnosed with bronchitis, COPD, etc., etc. So who knows.

The update: New doctor who actually listened, asked questions, took voluminous notes, USED A STETHOSCOPE (first doctor in a long time who actually was "hands on")! Bottom line: "I can tell you the two things you DON'T have......cancer and Valley Fever." More tests are upcoming which is where I will finally dig in and say "humor me".

Thank you both for your very supportive letters. Can't tell you how much it means to know there are others who understand.
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SandysMom



Joined: 21 Jun 2011
Posts: 6
Location: Palm Springs, CA

PostPosted: Mon Jun 27, 2011 1:34 pm    Post subject: Reply with quote



For the past ten days now, I have totally changed my eating habits: no alcohol, no caffeine, no flour products, no sugars (natural OR artificial). I've been using the colloidal silver for the past four days, and the drop of clove oil for the past seven. The oil of oregano is used just to flavor salad dressings. Coconut oil is ....well, yechh! But I'm trying.

I've been TRYING to stick to the recommended dietary constraints but have found that each site conflicts with the next; some contradictions exist withIN the same site (e.g. "no tree-borne nuts" vs "black walnuts are good").



I don't know what to do about raisins, tomatoes, brown rice, legumes. No site refers to HOME-made mayonnaise. I assume that anything packaged in vinegar (vs. brine???) is a no-no....so I can't even use capers or horseradish for flavoring??? Is there a sure-fire list anywhere?

Whatever the case, just these nine days has led to some noticeable improvements. I have more energy anyway. My breathing seems somewhat better.
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MikeyGann



Joined: 23 Jun 2011
Posts: 32
Location: Mesa, az

PostPosted: Mon Jun 27, 2011 6:31 pm    Post subject: Reply with quote

Changing my Diet helped me too. Garlic pills and Cayenne peppers religiously.


I read vinegar was a antifungal, why is it a no no?
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MikeyGann



Joined: 23 Jun 2011
Posts: 32
Location: Mesa, az

PostPosted: Mon Jun 27, 2011 6:31 pm    Post subject: Reply with quote

also raw garlic and lots of hot sauce, no carbs, no sugars, no booze.
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SandysMom



Joined: 21 Jun 2011
Posts: 6
Location: Palm Springs, CA

PostPosted: Mon Jun 27, 2011 7:47 pm    Post subject: Reply with quote

Hi, Mickey

As I said, I'm saying all of this from the fog of confusion here because every site lists at least two or three things which are polar opposites of that listed on other sites.

BUT....distilled vinegar is a no-no which is why you can't use any condiments (even mustard or horseradish) or any fructose, sugar, dextrose, yada, yada, yada ....which eliminates ketchup, steak sauces, etc., etc. Anything with a thickening agent in it goes out the window, too, I guess, except arrowroot.

I read every label and try to stick to it all..... but I HAVE been breaking one rule (maybe two). I made my own Chex Mix (gluten free) with raw almonds (which ONE list says is OK but another says "no"). I know carbs are bad but, honestly, I gave up my wine and my diet sodas overnight and went with all of this stuff feet first.

It's NOT an easy diet to stick to, no matter WHAT this site says. Giving up almost all fruits only increases my urge to make an ice cream raid on the freezer! Shocked

If you have any more suggestions, I would truly welcome them! How do YOU do it???
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SandysMom



Joined: 21 Jun 2011
Posts: 6
Location: Palm Springs, CA

PostPosted: Mon Jun 27, 2011 7:50 pm    Post subject: Reply with quote



Sorry. Meant to mention that you apparently can use all of the RAW (undistilled) apple cider vinegar you want/can tolerate. Forget the balsamic, malt, red wine, etc., etc.

It's not cheap....not much of this stuff IS....but you can get Bragg's at most nutritional centers or a slightly cheaper store brand at Trader Joe's if you have one near you.
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MikeyGann



Joined: 23 Jun 2011
Posts: 32
Location: Mesa, az

PostPosted: Mon Jun 27, 2011 10:19 pm    Post subject: hmm Reply with quote

My mom was saying vinegar was bad too. I didnt realize it was fermented.


It is a really restrictive diet, like super atkins. I don't think I can really suffocate my diet forever, so I just severely limit what i eat now. I dont think I can live on only vegetables and meat.


I wish there was a all inclusive list, but I've yet to find one. im going to rent the valleyfever book they are promoting from the library, maybe ill find something inside of it that I can share.
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SandysMom



Joined: 21 Jun 2011
Posts: 6
Location: Palm Springs, CA

PostPosted: Tue Jun 28, 2011 1:44 pm    Post subject: Reply with quote


Micky,

I look forward to seeing your list, if you find one.

Until then, the apple cider vinegar ("raw") isn't bad....has a tiny bit of sweetness to it. give it a try. You'll find it, as I said, at any health food or nutrition store....or better yet, a Trader Joe's.

I don't know Mesa that well so I don't know what is available to you.

Good Luck.
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 254

PostPosted: Wed Jun 29, 2011 10:11 am    Post subject: Reply with quote

Hi Mikey,

Check out the "Beyond Your Doctor's Care" chapter when you get Valley Fever Epidemic from the library, but please read the whole book too. As the first and only book on VF for general audiences it'll have a lot more from our decade of research and volunteering. I'm sure you'll get a lot out of it.

As a comment, many of these foods and supplements in this thread have no relation to Valley Fever as it has been researched. Vinegar (apple cider or otherwise) can be harmful to the esophagus unless strongly diluted and won't specifically help against the Coccidioides fungal parasites.

This is the most virulent fungal parasite known to man and regulated in two antiterrorism laws. Normal fungus killing remedies don't stop VF. Many common antifungal drugs are useless against VF and the drugs prescribed for VF do not destroy it completely but rather reduce the fungal population. And even with the proven VF drugs there are relapses and side effects.

The best dietary bet is to focus on foods that are proven to promote immune system health, reduce inflammation, and reduce oxidative damage. This will help your body to be at its best when fighting Valley Fever or any disease. I'm glad you will be able to read the book soon to see this information.

Best of health,
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MikeyGann



Joined: 23 Jun 2011
Posts: 32
Location: Mesa, az

PostPosted: Wed Jun 29, 2011 12:15 pm    Post subject: Thx Reply with quote

Excellent info Dave Thank you
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