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don't order it if it doesn't matter

 
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jzirzow



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

PostPosted: Tue May 21, 2013 2:11 pm    Post subject: don't order it if it doesn't matter Reply with quote

I wrote earlier about the incomplete skin biopsies done in which no fungal culture was done. I saw Dr. G today and he pretty much dismissed the error and is OK with me using the steroids. Basically said, histology didn't show much by way of fungus. I have combed the research including his own and it is my understanding histology often shows nothing. My titters are not showing much. This would be a comfort except for the fact I've never had cultures higher than 1>2 at any given time over the past 2 years. Even when cocci was spreading in my lung. I'm just frustrated I guess. I wanted answers and resolution not more frustration. If I felt well I could tolerate it but I don't. Just irritating when a test is ordered and after it is messed up it is not important. Maybe I should stop seeking answers and ignore the symptoms. I might be better off.
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vfs_admin_Sharon
Site Admin


Joined: 19 Dec 2004
Posts: 99

PostPosted: Tue May 21, 2013 3:58 pm    Post subject: Reply with quote

I'm sorry you were treated and dismissed in this manner. Over the years we have heard both positive and negative about people seeing Dr. G. Some people think he is the greatest, and others think the opposite. Just because a doctor is into the VF research does not mean he has a good bedside manner or can't make mistakes. If you are happy with Dr. G I would stick with him. If not, you may feel better finding someone else.

Sharon
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jzirzow



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

PostPosted: Tue May 21, 2013 5:14 pm    Post subject: Reply with quote

Sharon,
Thanks for the feedback. I don't think I will be seeing Dr. G again and we don't have followup planned. I am not sure how I feel or what to feel. I have been down this road before as in be told not to worry and within one and a half years lost my lung to vf. I don't understand why my titters don't reflect what vf is doing to my body but my lung is proof it isn't. My first visit was ok but today he seemed disinterested or indifferent. I went to him after reading his research and feeling confident in his ability to conduct a thorough assessment. As I said, the biggest frustration is the fact he dismisses histology in his journals and dresses the importance of cultures.
I felt like I was doing the right thing by following up but he is turning it over to my primary care. I assumed I'd followup on the vf given my lobectomy was in October but perhaps I'm confused about what I need.
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idoncov



Joined: 15 Aug 2012
Posts: 19
Location: Half Moon Bay, CA

PostPosted: Wed May 22, 2013 4:03 am    Post subject: Reply with quote

jzirzow,

I watched the Dr. G lecture today that he gave on 4/13/2012 on diagnosing VF and grading it's severity. He states, I believe, that 70% of those with cocci meningitis don't show it in their titer values at all. They look for other markers. So low titers don't seem to be a good measure of health.
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jzirzow



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

PostPosted: Wed May 22, 2013 1:02 pm    Post subject: Reply with quote

That is also what I have read. I am just very disappointed that he isn't pushing harder for repeat biopsy of skin. He also suggested that if it was in the bone I would have fractures. The hx I provided shows 2 spontaneous bone fix over past 2 year, my calcium is elevated, parathyroid is elevated, have increased areas of infiltrate in my lung since surgery, and also continue with awful night sweats. I am going back to work next Tuesday and wanted to know I was doing all I could to manage this. My lesions are textbook cocci... verrocous ulcers. This lesion developed after fluconazole was stopped and after I developed bacteremia/ uremia or sepsis post lobectomy. I have had episodes of rash/lesions since DX. Steroids have only hastened symptoms in the past. Delaying biopsy seems like a bad plan.
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Budster



Joined: 29 Dec 2004
Posts: 346
Location: Simi Valley, CA

PostPosted: Fri May 24, 2013 7:58 am    Post subject: Reply with quote

jz, I had a "verrocous ulcer" appear on the side of my bicep three weeks after they stopped the Diflucan. after a couple of more weeks wondering what the heck this thing was I went back to my Dr who took a biopsy and determined that it was disseminated cocci and immediately put me back on Diflucan. The lesion took over a month to go away (I still have a scar where it was). I was lucky to have a Dr that understood cocci and took immediate action. Being of Filipino decent I am on a maintenance dosage of 100mg per day of Fluconazole and will continue with this till the end. I still have occasional night sweats, achy joints, lack of energy, etc…..
I would be after my Dr to get the biopsy right away. We have to really be proactive for ourselves with this disease. Don’t let the Dr dictate the ‘best treatment’ if you don’t think its right. Do your research, stand your ground. I hope it gets easier and better for you.
_________________
Warm Regards,
Jerry

see my VF webpage here:http://www.budster.com/vf-01.htm
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jzirzow



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

PostPosted: Fri May 24, 2013 5:58 pm    Post subject: Reply with quote

Jerry,
Thanks for the feedback and support. My primary care Dr called the dermatologist after looking at the ulcers and though the dermatologist is convinced based on histology its not cocci, she has agreed to repeat cultures. She said I should just call and schedule. My Dr is really backing me and feels the cultures are the best test to get the necessary answers. She read dome research I suggested and it convinced her histology doesn't offer info I need. I am glad she is such an advocate. I will call next week to schedule. You are right about long healing and scaring. I have many scars from the lesions. The Dr kept asking if I scratch them and I do not. I tried to explain to the dermatologist that the lesions are just persistent and the raised outer border just develops as part of it process. I am relieved by the need from my primary Dr... I tried the steroids and now they loom even more infected.
Jenn
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