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Medications for cocci meningitis

 
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kkmanns



Joined: 24 Nov 2006
Posts: 14
Location: Corona, California

PostPosted: Wed Feb 07, 2007 11:46 am    Post subject: Medications for cocci meningitis Reply with quote

Anyone who has dealt with cocci-meningitis. My husband has now been home from the hospital for two months. Fortunately the shunt has held up. His back is healing well and he has just got his appetite back. He is now able to use the restroom without having to wear a catheter, but he is still having trouble moving his bowels. He has numbness (partial paralyzation?) in the outer part of his left leg and into his scrotem. He has been taking 2000 milegrams of flucozynal daily. He went in for an MRI last week and his doctor called and said that their is fluid on his spine again, just a small amount, but they are concerned with it building up into large cysts again. His infectious disease doctor told him to stop taking the flucozynal and to take something call vfend. Have you heard of this medication or has your husband taken it? He is taking 800 milegrams of this medication daily. We are very concerned because of the fluid building up on his spine can cause paralyzation and too many back surgeries only adds to the scar tissue which closes off the spinal chord and creates more fluid build up on his spine. The doctor said this could happen again but I am surprised it is so soon. If you or anyone else has any experience with this medication Id like to know why it was prescribed in your case and if it worked better than the flucozynol. Thank you.
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Robin Smith



Joined: 28 Dec 2004
Posts: 349
Location: San Diego

PostPosted: Fri Feb 09, 2007 9:37 pm    Post subject: My Story Is Very Similar ... Reply with quote

Hi, my name is Robin Smith. I'm very sorry to hear about what you and your husband are going through. It sounds very similar to my case. When my valley fever disseminated, I was hospitalized with neurological symptoms very much like the ones you talk about. They had me on 2000 mg of fluconazole also. The drug was causing life threatening conditions of its own not to mention what the valley fever was doing. My liver and kidneys began to fail as a result.

Surgeries were also performed on my spine to relieve the pressure from spinal cord swelling. Because of that, I am now partially paralyzed and confined to a wheelchair but beyond that, it's a miracle that I'm alive at all. I'll get to the point: Had my family not intervened and had me transferred to another hospital to begin a new treatment regimine, I would have died from either the high doses of Fluconazole or from the valley fever itself.

The new Dr immediately discontinued the fluconazole which was doing absolutely no good. He told us that I was dying. A new way had to be found to control the valley fever infection. He had an Ommaya shunt surgically implanted behind my left ear. This shunt is about the size of a quarter (invisable) and allows him to inject Amphotericin-b directly into my brain/spinal fluid where the infection is and is causing damage.

When valley fever progresses to the point that it sounds like it has with your husband (and myself), oral anti-fungals simply do not work any longer. Trust me on this. By the time the cocci has infected the spinal fluid to that degree, oral anti-fungals simply cannot transmit effectively enough from the bloodstream to the spinal fluid to do any good. It's a waste of time.

We have been doing these intrathecal amphotericin-b treatments for over four years now. Although I was hospitalized for over two years and very nearly died in ICU twice, I am home now with undetectable titers and doing very well.

Forgive me. I'm sorry to be so blunt but I don't know how else to say this: Disseminated cocci with this level of neurological involvement is usually lethal. I would not be alive today but for the Grace of God and the effectiveness of the Amphotericin-b treatments. They saved my life. I wish you the best and you are in my prayers.

Sincerely,

Robin


Last edited by Robin Smith on Tue Oct 02, 2007 8:02 pm; edited 1 time in total
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kkmanns



Joined: 24 Nov 2006
Posts: 14
Location: Corona, California

PostPosted: Sat Feb 10, 2007 2:22 pm    Post subject: Thanks for your reply Reply with quote

I will keep you in my prayers. Yes I do know at this stage his illness is terminal. We don't know how long he will live, but know that with the proper medication he can prolong his life. The new medication vfend that his infectious disease doctor prescribed is used in place of Amphotericin B. They will do another MRI in a couple of months to see if there is more spinal fluid on his spine. My husband actually never had valley fever it went to meningitis. He had it for 6 years before this last incident in December. Up until then he seemed to be doing fine with the flucozynol. His system has been able to tolerate the large dosage. I think by now he may have built up an immunity to it though. Hopefully the new medication will slow down some of the infection and allow him to heal. He also has a shunt because the lining of his brain has hardened. Im terrafied at the possiblitity of the medication not being effective. This disease progresses so rapidly when its not controlled.
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catchid
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PostPosted: Thu Mar 01, 2007 11:44 pm    Post subject: Reply with quote

I am so sorry to hear what you are going through. I know it all to well. Chris has been in and out of the hospital for 14 months now. More in than out. He just had his 23 shunt surgery in 14 months. They did amp b for awhile to get the cocci under control and then put him on v-fend. He is now on 800mg a day of v-fend. He was on fluconizole at the time the cocci got so bad and they just called it fluconizole failure. With the v-fend the cocci has been under control but the shunts just keep getting plugged up. Your husband probably has one shunt but with Chris there has been so much damage that he has two. What they did with Chris was they put a port in is back and injected the amb b through that port and the ones in his head to get it under control and once it was under control the v-fend has been maintaining it. Now if we can just keep the shunts from getting clogged. Robin is a great person to talk to because he has alot of knowledge and I'm here for you. Trust me I know exactly what you are going through. God bless you Love Catchi
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abco



Joined: 01 Aug 2007
Posts: 6
Location: CRYSTAL LAKE IL

PostPosted: Thu Aug 09, 2007 12:28 pm    Post subject: Reply with quote

I am very new to this sight. I am sorry to hear of your husbands conditions they seem very close to my conditions. I got sick April 2000 went through ampho both IV and intertheocol 40+ spinal taps diflucan(did not work) shunt spinal surgery and was one of the first people to be treated with V-fend(I was part of the clinical trial) I think it is what saved my life. I do have side effects of always being sun burned I hope thing s get better for you and your husband. I have been on the V-fend for about 5 years . I still have the roller coaster ride known as VF but the lows are not as bad RIC
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catchid
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PostPosted: Thu Aug 09, 2007 8:11 pm    Post subject: Reply with quote

I pray for you and your family that things start to get better. After 35 shunt surgeries in the last year and a half my husband is finally starting to get better. The v-fend has been keeping his cocci under control but there has been so much damage the shunts kept failing and his last stay at the hospital he had several cysts in the right side of his brain. When he got discharged he couldnt walk talk or eat. He had a trach, a feeding tube and a cathader. All of those have been removed and he is able to walk talk and eat again. He is very mentally confused and has no short term memory but I have even seen improvement in that over the last month. Take Care and God bless ---- Catchi
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Robin Smith



Joined: 28 Dec 2004
Posts: 349
Location: San Diego

PostPosted: Sun Sep 30, 2007 1:07 pm    Post subject: Hi, It's Robin Again . . . Reply with quote

Dear kkmanns,

We haven't heard from you in a while. Please let us know how things are going. I may not have made my point very well in my last post to you. I want to be encouraging, not pesimistic about your husband's treatment (and future). The crux of my thought is that intrathecal amphotericin-b saved my life and I believe could help your husband as well. I am in contact with a doctor who is a leading expert in the treatment of VF using this method. He conferred by phone with my infectious disease Dr and helped save my life. I would like to put you in contact with him to at least ask some questions.

Robin
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kkmanns



Joined: 24 Nov 2006
Posts: 14
Location: Corona, California

PostPosted: Sun Apr 06, 2008 8:19 pm    Post subject: Hello - quick update Reply with quote

My husband is doing ok. After his last medical emergency, spinal chord surger and placement of a shunt he has done well. His last MRI has shown that there is a cyst on his spinal chord again and it has grown to about 5 inches in diameter. It isn't causing any symptoms at this time and we are praying that it does not get larger. He is working again and most days is doing very well. This past week however he was not feeling well, stomaching cramping feeling sick and thought he had the flu. He was also having trouble with constipation (for background info when he last went into the hospital for surgery one of the first symptoms he had was he could not move his bowels and then he lost the ability to urine a well...pressure on the nerves in his spine from the fluid build up had taken away the ability for these functions) anyway I noticed four days ago that his eyes were really yellow and I knew immediately something was wrong with his liver. As you may know with the high dosage of VFend or Flucozinal blood work has to be done regularly to monitor the liver damage that can occur. I told him he needed to go to the hospital immediately and have his blood drawn. He did and his infectious disease doctor called the next day and said his liver enzymes were way to high and she told him not take any VFend over the weekend and then they would test again next week. His eyes arent as yellow and we are hoping his enzymes go down. He is going to have another MRI to see if the cyst has grown and if it could be pressing on the nerves again. When he last had surgery the doctors were amazed he wasnt completely paralyzed. He had so much scar tissue around his spinal chord and so much fluid. It is scary because he could become paralyzed at any time and if the doctors have to go in again and perform surger on his back it could also cause paralyzation. We are just grateful that he is doing as well as he is and pray that he won't get any worse. Everyday is a blessing. I don't check into this site as often any more. God Bless.
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kat



Joined: 30 Dec 2004
Posts: 912
Location: Creswell, Or

PostPosted: Sun Apr 06, 2008 9:51 pm    Post subject: Reply with quote

kkmanns,

So sorry to hear that your husband is having problems again. Thank you for taking the time to let us know how he is doing. I know how hard it is to be a caretaker and find the time to spend on this message board. Your input could be very helpful to someone else. Prayers go out to you and your husband that things will improve and surgery not needed.
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God Bless you and keep you,
Kathy
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kkmanns



Joined: 24 Nov 2006
Posts: 14
Location: Corona, California

PostPosted: Wed Apr 09, 2008 3:10 pm    Post subject: Enzymes are still too high. Reply with quote

Hello -

My husband had is blood tested again on Monday and his enzymes are still to high. His ID doctor told him to stay off Vfend for another three days and then retest. My concern is how long can he stay off the medication before the fungus starts becoming active again, headaches start and possibly more damage is done. Our concern is if the VFend is too much for his liver now or if his liver is damaged would he even be a good candidate for a liver transplant. I was reading up on it and looks like your immune system has to be surpressed in order to do the surgery and keep your body from rejecting the new organ. And would he have to be off of all other meds during the process. Would he even be considered since he has a life threatening illness and isnt otherwise a healthy recipient?
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Rina Steyn



Joined: 08 Sep 2011
Posts: 1
Location: Clovis, Ca

PostPosted: Sat Sep 24, 2011 3:08 am    Post subject: Reply with quote

Hi
My daughter has suffered from cocci meningitis for the past two years, with so many shuntfailures and surgeries that we lost count. She has been in the hospital more than been at home and we are so sad that her baby is growing up without her. She is currently in hospital again because of infection wich I thought she came home with after her previous hospitalisation. She currently has a EVD in and has been on antibiotics for longer than 3wks and her CSF is still not clear. Only found out today that the last cocci titer was done back in June and was 1:8 in her spinal fluid and 1:16 in her blood. She is on Diflucan 600mg, the decreased the dose 6mo back because her Diflucan level was toxic. Was wondering if there is a correlation between cocci titer and shuntfailure?
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claudia c



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

PostPosted: Mon Sep 26, 2011 12:56 am    Post subject: Reply with quote

Hello Rina, I'm so sorry to be reading about your daughter and her battle. I don't know if you have read many postings on this website but there is Robin Smith who has had a harrowing experience with cocci. He has first hand knowledge about disseminated cocci, shunts and much more. Maybe he would be able to help. You could try a posting with his name in it. I know he responds to postings on a fairly regular basis. I wish you the very best and will pray for your daughter, Claudia
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Robin Smith



Joined: 28 Dec 2004
Posts: 349
Location: San Diego

PostPosted: Tue Sep 27, 2011 9:56 pm    Post subject: Disseminated Cocci . . . Reply with quote

Hi Rina,
Let me know if I can help.
Robin
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kkmanns



Joined: 24 Nov 2006
Posts: 14
Location: Corona, California

PostPosted: Fri Jun 16, 2017 2:10 pm    Post subject: Update on my now ex husband and his battle with Cocci Menigi Reply with quote

Just a quick update with a heavy heart I wanted to report tha after 16 years and 3 months and reaching his 50th birthday my ex husband passed away yesterday after the multiple brain surgeries throughout the years. After the placement and replacement of shunts over the years his brain was just to fragile and began bleeding uncontrollably. While they were able to drain most of the blood one clot would not break up and was pushing his brain to one side causing irreplaceable damage that would have left him non functioning had his body been able to sustain itself. June 15, 2017. He survived much longer than we had thought he would when he was first diagnosed in 2001.

Our daughters are now 23, 20 and 17. He always prayed that he would be around long enough to raise them. The first time he was sick and hospitalized he called me on the phone and cried telling me he did not want to die and leave me and the girls and I cried along with him fearful he woldn't make it home, but he did. He was blessed and got to see our oldest graduate from college, our second graduate from high school and enter college and unfortunately will miss our youngest graduate and God willing get an athletic scholorship, but he had time with her to assist her into becoming an talented basketball player and worked so hard to provide her with training and participation national travel ball teams. Her senior year will be bitter sweet as she completes her last season of H.S. basketball and signs to play on the University level without her dad by her side. Still we were blessed with many wonderful years and through all the illness and hospitalizations, surgeries and prayers we are thankful for the time he had.


God bless all those still battling with this cherrish everyday with your loved ones. Time goes by much too fast.
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vfs_admin_Dave
Site Admin


Joined: 19 Dec 2004
Posts: 273

PostPosted: Sat Jun 17, 2017 7:34 am    Post subject: Reply with quote

I know you haven't written in a long time and when that happens we always hope that is a good sign. I am very sorry to learn that your husband died from this horrible disease. Our prayers go out to you and your family in your time of loss. I'm glad to see that you joined our Facebook support group.
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