My pulmonary doctor called yesterday after reviewing the second CT Scan and we are now going to do a bronchoscopy (video camera down the nose to the lung) later this week to examine the "spot" that is still there. The equipment apparently can also take mucus samples and can do a biopsy if needed. The second VF "cocci" blood evaluation is not yet back from the UC Davis microbiology department which is doing a study-related "interpretation".
Today my pulmonology doctor conducted a "bronchoscopy" (video scoping) of my bronichial air passages. He found irriatation along the walls and he took mucus and tissue biopsy. Full results will not be known for a couple of weeks and if cocci is in the airway, I will be turned over to the Infectious Disease Dept. for the anti-fungal treatment. (ID has been part of my Kaiser Health Plan VF team from the beginning.) He did not scope the acutal spots in my lung, saying that procedure is too risky with the equipment he used today.
I did get some lab reports this afternoon that indicated "rare polymorphonuclear leukocytes, many gram positive cocci in pairs, and few gram positive cocci in clusters." I don't want to self-diagnosis after reading related diseases after a Google search. I will wait for my doctor's interpretation and then ask questions if not satisfied with the diagnosis and treatment plan.
CoolJudy, I hope everything goes well with your tests. It can be really frustrating during the wait, and I completely understand that frustration all too well! Do you think it's still VF or something else now?
There are so many similarities among all of our VF stories. I am really surprised and comforted to see that people are going through the same thing I am going through. I just moved to South Carolina in August, which has been great for all things except VF treatment.
Currently, I think a lot of doctors see me as this now healthy looking 25-year-old, and they don't take me seriously (or read through my mountain of paperwork from previous doctors) until I literally highlight my previous doctor's notes to show them how sick I was and could possibly be again if they do not keep up with monitoring the VF, liver functions, etc. (Sorry for the vent!)
I have a doctor's appointment in Charleston in a couple weeks, and I'm super nervous about it. The main point of the appointment is to get the appropriate blood work done and to see if the VF spread when my lung collapsed. When I left Phoenix, Infectious Disease docs thought that its as disseminated and Pulmonary did not think it was disseminated. I am really hoping that it is not.
I'm lucky that I have not had too many negative side affects from the Fluconazole, but I worry that prolonged usage might be really harmful. Has anyone been on the meds for a long time (5+ years)? If so, did your dosage need to be changed or did you develop any new side affects?
Thanks for all your support, everyone! It's really great to be able to post on here because it seems like VF complications are somewhat rare, and it's good to get all of this out to people who understand!
I know people who have been on Fluconozole for over ten years and they are doing fine. They are, of course, monitored by their doctors and get labs drawn to check liver and other organ panels every six months. Sometimes they cut their dose down when they are not as symptomatic from the Valley Fever. It made some peoples hair fall out, dry cracked lips and fatigue, including myself. Valley Fever also causes fatigue so who knows if it's the meds or the illness. I was on Flucon for six months, off for two, and now I'm back on 400mgs a day. My Valley Fever flared up so bad when I went off the Flucon that I will never go off it again. Good luck!
I am so glad I found this site. I came down with what I thought was a chest cold in March. I have never had pneumonia before and I was having sharp stabbing pains in my chest and started running a 104 temp regularly. That was a battle in of itself trying to stay ahead of the fever with tylenol and motrin. Anyway it took 3 E.R. visits and 3 courses of antibiotics for them to finally diagnose me (April 13th). You would think if someone is still running a raging fever on antibiotics they would have checked into other reasons. My titer at diagnosis was 32. It is down to 8 now but I still feel like a truck hit me. Recently I have been experiencing I guess what you would call neurological symptoms (wrote a long article about it in the general section) so even though I am not running a fever he wants a spinal tap. but of course I have to wait for insurance authorization...my neck has gotten worse and if I didn't have an appt this week with the infectious disease specialist I would go back to the E.R. as inept as they may be... Meningitis scares the heck out of me but I read I have a lot of symptoms that are consistent with MS so of the two I think I prefer meningitis but I hope it isn't. I am on 800 mg of diflucan (one reason the doc wants a spinal tap because if I don't need a high dose he doesn't want to damage my liver) I experienced some loss of appetite at first and dry (like if you smile your lips start bleeding, that dry) lips. Other than that I have had no side effects so far. I was on 400 mg and have only been on the 800 for June. Anyway (sorry if tmi) I am starting to cough up stuff that reminds me of when I was really sick (white) so idk if it is trying to resurface. I had one good month before it hit me if that is what is going on. I hope this won't be the pattern for the rest of my life. As much as I would like to lie around I simply can't with a child to raise. I look forward to hearing more stories so I know the possibilities of what I can expect
Your story is much like the thousands of others who have been victims of valley fever. There is a good book out called Valley Fever Survivor that you should find and order. It's like the Bible of this disease. What you are, and have gone through, is consistant with valley fever. It's good you are getting a lumbar puncture. I personally think everyone should get them because once the valley fever dissimanates to the lungs or other areas the chances of it being in your brain is high. I have cocci meningites as do hundreds of other people in my support group and they manage to live a semplence of a normal life so don't let it scare you too much. You will need to watch your diet for the rest of your life, and your stress level. The fungus loves sugar so cut out sugar and carbs as much as you can. This is my third year after diagnosis and my sixth year since being sick and diet has made a huge difference. You have a child to be responsible for so it's going to be hard not to over exert yourself. Just rest as often as you can. I'm glad you have insurance. Oh, the dry lips is a common side effect of diflucan as is hair loss. I use tea tree oil on my lips and a mild lip balm. Oh, one more thing; if you have an opthomologist you might want to get your eyes checked. Valley fever is famous for attacking open vessels, such as our eyes. You might want to get a test called an OLT which takes a picture of your eyes to see and have the eye doc check out your optic nerve. Good luck...keep us posted.
Well I got a call a couple days ago and scheduled my spinal tap, and it is today. I was told afterwards I would be in recovery for 45 minutes to 2 hours depending, I guess, how I do. I am wondering, and I know you can't know for sure, but if anyone has any insight, what are the chances I will be admitted into the hospital? Is it based on what they find, my symptoms or what? I am trying to make contingency plans so I have a bag packed, and my family has enough food and clean clothes to survive for a while (it sounds melodramatic but in a family of men you would be surprised at how helpless they can act.) btw does anyone know if the test is like the blood tests they run, like can you have a little bit or a lot (titer) or is it just a yes or no it's there or it isn't? Also is it standard procedure to test for the other things like MS or does the doctor have to order it. Thanks in advance. my test is in 7 1/2 hours so gonna eat my "last meal" they said to fast 4 hours before the test.
It's important you lie very still after your spinal tap as it is possible to get a terrible headache afterwards if you raise you head too much. And don't be surprised if your back is sore later. I used to be a lab assistant and we would test spinal fluid for several different types of infections whether bacterial or infectious so I am sure your doctor will order every test available. The valley fever people in my VF support group, Valley Fever Survivors, who have cocci meningitis, have all been treated differently. Sometimes the doctors begin treatment immediately while the patient is still in the hospital and other times they are rescheduled for treatment depending on the level of the illness. Yes, it is possible to tell how rampant the cocci has spread with a lumbar puncture. Good luck...you'll do fine. Let us know how it goes and also the results. I'll send prayers your way.
Well the test was negative but the nurse said there were no MS tests ordered so IDK The good news is it hardly hurt at all and no headache , just my neck and back that were hurting beforehand next stop is the cervical and lumbar MRI Monday. Also the dr lowered me to 600mg of diflucan and lab rechecks in 4 weeks. I see my primary dr the 9th and will run all this by her and see what she thinks.
That is great news! Hopefully the VF will eventually go dormant for you. It did for me, after about two years, but I still take the Diflucan and suffer from the damage that the fungus had already done to my lungs and joints. The best thing that works for me is rest, rest, rest. The chronic fatigue is what still plagues my daily life, even on my good days when I don't feel any side effects from the medication or illness. I'm glad you are getting tests and treatment. What part of the country do you live?