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Staciediane8



Joined: 30 Apr 2014
Posts: 4
Location: Texas

PostPosted: Fri May 02, 2014 10:33 am    Post subject: New here & looking for answers? Reply with quote

Hello all!

I am new here & I know y'all are not doctors but I have found sometimes when you experience the illness for long enough, sometimes you just might have more info than some doctors.

I have been having low grade fevers every evening which peaks at 100.6-100.8. Night sweats (wake up sopping wet), chills, hot flashes, chest pain, nagging dry cough, short of breath, headaches, joint stiffness, general malaise for over 6 months. I also do not have a spleen.

I live in S. TX & have seen an Infectious Disease doc. She did a basic ID workup & nothing came up. Been searching for answers for months now seeing numerous doctors but no answers so I went to Mayo Scottsdale on April 1, 2014 & stayed with my Dad who lives in Scottsdale.

I had two weeks of extensive workup at Mayo. First day, I was admitted but finished my care as outpatient (much less stressful).

Anyway, My WBC mildly elevated, CRP 16, elevated Alpha 1 & 2 Globulins as well as elevated Monocytes, leukocytes & lymphocytes. The only thing that stood out was positive Cocci IgM by EIA negative IgG by EIA. The Mayo ID doc felt it was a false positive & for some reason the serology didn't get run. They re-ran the Cocci two weeks later. Again, I had positive IgM but negative IgG by EIA. The infectious disease doc said the rest of the serology was negative so he feels both were false positive.

My frustration is my symptoms are getting worse, I am so fatigued can't seem to get enough rest. My dad asked his Allergist in Phoenix yesterday about my case & she saw my labs & said a positive is a positive & I should see a pulmonary doctor.

Has anyone heard of two False Positive for Cocci IgM?

Thanks in advance!
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susan ulmer



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

PostPosted: Fri May 02, 2014 7:10 pm    Post subject: Reply with quote

Hi Staciediane8..

Welcome. From what I know about the IgM titer, it is the first indication of VF and your body's production of the original antibodies to fight it. It shows that you have been infected and your body has started to fight. It takes a bit of time to develop IgG antibodies and they show a Cocci infection which has taken hold or an old infection that has shown up again. It seems entirely logical for you to show the one without the other if you have a new infection.

It sounds to me that you are showing all the signs and symptoms of VF and should begin to take care of yourself as if you have it. Get plenty of rest, severely reduce the amount of sugar in your diet and generally eat as healthily as possible. Diet is key and most of us who can get with this program have found we feel better.

My next advice is to change doctors. We have ll gone through many supposedly knowledgeable doctors who refuse to admit VF as a possibility and they make us crazy but I think it may be possible to find someone who will take you seriously because the proper treatment is vital.

Stick to your guns and don't let them convince you that you need antibiotics or steroids until you get a definitive VF answer...they are not recommended with VF but commonly given in error. Go with your gut. Take care of yourself.

I'm sure someone with more knowledge will also answer you but I wanted to welcome you and give you a bit of support in your convictions. Let us know how things are going for you.

Al the best,
Susan
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Staciediane8



Joined: 30 Apr 2014
Posts: 4
Location: Texas

PostPosted: Sat May 03, 2014 8:38 am    Post subject: Reply with quote

Susan, thanks so much for responding! Your explanation makes sense about it taking awhile for the IgG to show up since it takes awhile for your body to build up antibodies.

Do you know how they determine if it's VF for sure? Also, is it bad to be treated for VF as a precaution to see if you feel better? Mayo told me the treatment is anti fungal medicine? Do you know if this is true? I only ask because I have been feeling so rotten for awhile now & this is the first thing that stood out & makes sense! It's taking over my life more & more lately. Also, not having a spleen & my immune system already being down I just worry about getting sicker. Thank you for the diet advice, good to know!
Mind if I ask, do you currently have VF & if so, are you being treated?

I just know something is wrong with me & worried I won't find a good doc to help. Most docs haven't heard of VF in S. TX despite it being in the news:(.

Thanks again, Stacie
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susan ulmer



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

PostPosted: Sat May 03, 2014 10:48 am    Post subject: Reply with quote

Hi Stacie..

I'm not the expert on this board and that's the truth. However,usually the test you had, the compliment fixation titer test, is how they determine you have VF but they can also do it with a culture or biopsy. You could also ask for another test in a couple of weeks to see if the IgG antibodies have shown up. I wouldn't just accept this "blow it off" diagnosis because I would call these results inconclusive and it is premature to discard the chance that you have VF. Did they also test for blastomycosis and histoplasmosis? These are both fungal infections that are found in S. Texas and have symptoms very similar to VF and require the same anti-fungal drugs as VF.

As for VF, the longer you give the fungus to flourish, the more established it becomes and the harder it is to get rid of. While many people get the two week, "flu-like VF, a large number of us get the chronic, reoccurring form and for a few of us, it disseminates to other organs. I don't know what to to tell you about the anti-fungals because of your lack of a spleen. I truly don't know what effect that would have but ordinarily I would say it wouldn't hurt to start the anti-fungals...if they make you feel better, it's a good sign that you have VF.

They are hard on your system though and have many negative side effects so it would be good if the docs could figure out something definitive. What you don't want is to be prescribed antibiotics or steroids which are usual goto when they can't figure out what's wrong because both of these strengthen the cocci fungus by changing your ph balance and reducing your immune response [in the case of steroids]. That's why a correct diagnosis is crucial and I would insist on being retested or having a sample cultured.

If your immune system is down, it is crucial for you to build it back up as quickly as possible because no matter what is wrong, and especially with VF, the less resistance you have, the less chance you have to beat whatever you have back. On the VFSurvivor Facebook page in the "Notes" section, our diet guru, Sharon, has posted a list of immune system boosting foods. Along with these it is truly CRUCIAL to cut out the sugar because it is the fungus' favorite food and the more sugar-heavy your diet is the less likely you are to have a quick recovery response. Also, limiting your processed foods and junk food helps a bunch. Sharon and Dave Filip have written a great book, our bible, about VF.."VFEpidemic" in which you will find so much of what you need to know in this fight. They have done extensive research on this subject because Sharon was stricken with VF and has "cured" herself with lifestyle changes. Dave, her son, is the guy who interprets all the scientific mumbo jumbo into language we all can understand. This is their site. You will see the book on thee Facebook page and can order it on Amazon, if you want a copy. I suggest that you get one if you can..you can also ask your local library to order one for you if finances are an issue.

As for me, my Vf has disseminated to my skin because when I got it 36 years ago, no one knew anything and by the time I got my diagnosis, it was way late. I have taken fluconazole and itraconazole but at the stage my VF is in, the anti-fungal drugs I can afford no longer work so I moved from the endemic area and cleaned up my act...eating Sharon's diet [pretty much] and staying away from possible re-infection if possible. I'm better than I have been in years but as VF is incurable, I have to constantly stay on guard. That's why I hope you can beat it back early..if you have it..I wouldn't wish what has happened to me on anyone.

All the best,
Susan
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Mon May 05, 2014 11:28 am    Post subject: Reply with quote

Hi Staciediane8,

Susan offered a lot of good advice much faster than I was able to.

False negatives tend to be the biggest problem in Valley Fever cases. However it just happens that an EIA test that shows positive IgM but negative IgG tends toward false positives. The IgM antibodies are usually gone after the first few weeks of illness so after six months of illness it is not likely they would show up without the IgG.

That said, I never rule VF out since it can cause so many insidious problems. The EIA had been about 10% better in some comparative tests than the Compliment Fixation Titer, but the CF titer would be the next step to try and does not suffer from the same IgM problems. Remember that these all check for antibodies, and without a spleen your body may not have as much immune function to produce them in the quantities the test would look for. Have you had an X-Ray or CT scan to determine whether there are nodules in your lung to cause the chronic coughing?

If there is anything to culture for a micro organism, then that would be the definitive diagnosis for Valley Fever or anything else. Do make an appointment to see a pulmonologist and please let us know any information once you have it as to your diagnosis and treatment.

Best of health,
_________________
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
View our You Tube channel: www.youtube.com/valleyfeversurvivor
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beepositive



Joined: 08 May 2014
Posts: 1
Location: Oro Valley, Arizona

PostPosted: Sat May 10, 2014 6:22 pm    Post subject: new to the forum Reply with quote

I'm in Tucson, Arizona. My husband & I have lived here since 2003. In May of 2008, he developed a "lung infection" and all tests came back negative, including VF and TB. There were lung nodules and doctors said to repeat XRay in six months. But it went away and all was well. In January of 2013, he wasn't feeling well and went to ER thinking heart attack. No other symptoms but the pain in his right arm (not left). After a couple of hours, ER sent him home, but said he had some nodules on his lungs that he should get "checked out." That night, he ran a fever until morning. Then he was fine, but followed up with primary care who said he had a lung infection and ran tests, including VF culture. Two days later, he could barely breathe and was too weak to walk. Off to ER. He was in ICU for a week and on a ventilator. He was released and weak as a kitten, but felt well and was put on fluconazole. His titers were 1:32. One year later, (February 2014) feeling great and titers <1:2. Pulmonologist took him off fluconazole. We were doing yard work during April and also took a trip back east. A couple of weeks ago, his titers went to 1:4, so back on the meds, but no symptoms. Now, his titers are 1:16 and he's a bit fatigued and having some allergy symptoms, but that's it. All along, all of the doctors assure us both he's fine. We just need to build his immune system. Working in the yard isn't hurting him. It's just his DNA. And moving out of this climate won't change anything. My husband is very strong but has been under a lot of stress. Now, here it is Saturday night, pulmonologist won't be back from vacation until Tuesday, and we're both scared and confused. Is this going to be a repeat of last year? He just feels tired then a few days later is in ICU on a vent? Is this what's in store for us the rest of our lives?
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 275

PostPosted: Sun May 11, 2014 7:26 am    Post subject: Reply with quote

Hi beepositive,

I'm surprised the doctors would just keep putting him on medication and taking it away with such regularity. If their medical opinion didn't suggest so before, it certainly seems like this should be treated and examined like an ongoing condition and assumed to be ongoing until an extensive time with no reactivations.

Quote:
We just need to build his immune system. Working in the yard isn't hurting him. It's just his DNA.

We can't know if it is specifically his DNA or exactly why this case is hitting him hard, but it is entirely possible that your yard in Arizona could be dosing him with enough additional spores that have enough strength in numbers to break through his (possibly entirely healthy) immune resistance. Yard work and gardening are often said to be risk factors for VF infection.

For immune system improvement, how is his diet? VFS_Sharon and I have been doing a great deal of research into nutrition and disease resistance. With many who have VF, they have found major relief from symptoms just by improving their diet. Foods like greens, beets and others provide the direct building blocks people need to counteract the problems caused by Valley Fever. Processed sugar and processed flour, among other things like side effects from other medications, are major impediments to general good health, regardless of a person's battle with any disease. Throwing a disease into the mix and it seems like everything needs to be made its best. The Beyond Your Doctor's Care chapter in Valley Fever Epidemic has some of our commentary on this, as does our newer Notes page from our Valley Fever Survivor facebook timeline. Nutritional improvements have made a big difference for many struggling with Valley Fever.

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
View our You Tube channel: www.youtube.com/valleyfeversurvivor
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