Help me!
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Vikingjeff28
- Long Time Contributor
- Posts: 466
- Joined: Mon May 11, 2009 4:56 pm
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Nancy1
- Administrator
- Posts: 1902
- Joined: Wed Jan 18, 2006 1:48 am
Crystal,
Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.
It is hard enough for us to suffer from cdiff as adults, but to have to watch your little girl suffer too must be devastating. Be sure to read the Ten Commandments of Surviving Cdiff (especially #7 about never giving up hope), and Coping with Cdiff, both in the FAQ section. I printed both of them out and read them every day.
Several folks here have done the infusions, either by a doc or at home. They tell me that the success rate for these is high, so I hope you are able to do this and it works for you. Good luck. Let us know how it goes.
Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.
It is hard enough for us to suffer from cdiff as adults, but to have to watch your little girl suffer too must be devastating. Be sure to read the Ten Commandments of Surviving Cdiff (especially #7 about never giving up hope), and Coping with Cdiff, both in the FAQ section. I printed both of them out and read them every day.
Several folks here have done the infusions, either by a doc or at home. They tell me that the success rate for these is high, so I hope you are able to do this and it works for you. Good luck. Let us know how it goes.
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Kathy George
- Long Time Contributor
- Posts: 2105
- Joined: Sun Apr 12, 2009 9:19 am
Crystal,
You sent me a private message. Please email me at my personal email address. You can leave your telephone number as well, and I will be glad to get back to you. I did the home infusions and it cured me. Just like you I was on flagyl, Vanco more times than I can count and nothing helped me. Actually, I'm celebrating 1 year free of C-diff. Take care and feel free to contact me at your convenience.
Kathy
You sent me a private message. Please email me at my personal email address. You can leave your telephone number as well, and I will be glad to get back to you. I did the home infusions and it cured me. Just like you I was on flagyl, Vanco more times than I can count and nothing helped me. Actually, I'm celebrating 1 year free of C-diff. Take care and feel free to contact me at your convenience.
Kathy
I ask not for a lighter burden, but for broader shoulders.
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CAuger
- Regular User
- Posts: 33
- Joined: Fri Mar 26, 2010 7:13 pm
Thank you everyone for such a warm welcome! Everyone here is so kind and warm spirited....I already feel better just knowing that I am not alone and that so many people (just like me) are suffering from this as well. What is most encouraging is knowing that there can be a light at the end of the tunnel....that one can get over this. I just want to get better so that I can enjoy my beautiful children. I am so sick all of the time that I can barely function and I have already missed so much time with them. I do desperately want more children and I am not going to let this beat me. I will do the infusions, and pray that they work. I will have more children and if it comes back then I will beat it again- I now have the tools to do that. It amazes me that more doctors are not encouraging this- all of the docs that I have mentioned this to won't even comment. It is very frustrating because they say to trust them but it just keeps coming back. I want to live my life without a bottle of bleach everywhere I go! My 20 month old is sick and I hold a lot of guilt over this....she got it from me when I did not even know that it existed. The irony is that I am/was a major germ a phobe so I don't understand...I was always very clean. I need to get her better. Has anyone heard of the infusions being done on children? I don't know what to do for her anymore. Has anyone helped their children get over this in other ways? I cry most days, and I cry too often in front of my children. I want "me" back because C Diff strips your soul...it really eats away at you. I have a very supportive family but they will never (I pray that they will never know) know the reality of what one goes through with relapse after relapse. But, I am going to live my life- this will not beat me....
Thanks for listening and again, thanks for all of your support!
Crystal
Thanks for listening and again, thanks for all of your support!
Crystal
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anlockwood
- Long Time Contributor
- Posts: 456
- Joined: Sat Sep 06, 2008 9:10 am
Welcome Crystal!
I apologize because I haven't had too much time to get on here lately but I have a wonderful friend on the board who sent me an email because our stories very closely mimic each others. I sure hope that I can be of support and help to you and that you can find comfort in my story as well. My story with c diff started over a year and a half ago. My husband was deployed to Iraq at the time. I first got a spot on my leg that was supposedly MRSA and had to take Clindamyacin. I did okay after that but after a month and a half had to take Biaxin. Immediately I got sick. I ended up in the ER and a very smart DR guessed that it was c diff and started treatment immediatley. I tested positive. I had a 5 month old who was on antibiotics at the time as well. He went through 3 different antibiotics while I was sick. No one told me anything about c diff and I also passed it on to him. Excuse my language but it was a living hell to have a baby sick with c diff, be sick with c diff and have no one to help me out. My worst day was having to leave my 5 month old and 8 year old in the parking lot of a truck stop with police while I was taken by ambulance to the hospital. I did beat it my first go around that time. My son did also after a round in the hospital. He took Flagyl the first time but not well. At 72 days out he got the norovirus and it caused him to relapse. This time we tried Flagyl but he threw it up immediatley. We switched him to liquid vanco and did a taper over 6 weeks with it. The vanco worked amazingly for him. I wonder if you might try this with your child. It is relatively cheap and if your insurance covers pill vanco for adults you can get them to cover liquid vanco for children with a quick letter.
Fast forward to almost my year anniversary I had a root canal that supposedly went bad. Endo said I had to take antibiotics and then 4 days later said I never needed them. Too late as c diff came back less than 24 hours after taking them. I ended up on vanco after Flagyl didn't go well this time. I started on 125 4 times a day. During this same time found out I would have to have my gallbladder out. I stayed on the vanco and had my gallbladder out. A few days after I got the severe D and violently ill even though I was on vanco. They retested me and I tested positive. I relapsed on vanco 125 and was hospitalized. They bumped it up to 250 and it got that relapase under control. I did vanco followed with Xifaxin and am now over 4 months out from that nightmare. There were times through all this where it has stolen so much of my joy with my family, my boys and my life. I too have decided to just live on the good days and try to get through the bad days. You are going to beat this! I have complete confidence as well your child. Sometimes it just takes time. I wonder if you could try the liquid vanco and do a taper with your child. It may be the lifesaver you need. My son took a long time to get back to normal and his diet had to be watched very very closely. A lot of foods gave him D after C dfif. He is now over a year and 4 months out and doing amazing! You CANNOT blame yourself for passing on c diff to your child! Guilt insinuates intent and you definitely had no intent to pass this on to your child.
Please feel free to email me anytime at my personal email address. It is anlockwood24@msn.com. I am a stay-at-hom mom fulltime but also a fulltime student so life is crazy but I promise I will get back to you! I would love to help you in any way I can!
Sincerely,
Amanda
I apologize because I haven't had too much time to get on here lately but I have a wonderful friend on the board who sent me an email because our stories very closely mimic each others. I sure hope that I can be of support and help to you and that you can find comfort in my story as well. My story with c diff started over a year and a half ago. My husband was deployed to Iraq at the time. I first got a spot on my leg that was supposedly MRSA and had to take Clindamyacin. I did okay after that but after a month and a half had to take Biaxin. Immediately I got sick. I ended up in the ER and a very smart DR guessed that it was c diff and started treatment immediatley. I tested positive. I had a 5 month old who was on antibiotics at the time as well. He went through 3 different antibiotics while I was sick. No one told me anything about c diff and I also passed it on to him. Excuse my language but it was a living hell to have a baby sick with c diff, be sick with c diff and have no one to help me out. My worst day was having to leave my 5 month old and 8 year old in the parking lot of a truck stop with police while I was taken by ambulance to the hospital. I did beat it my first go around that time. My son did also after a round in the hospital. He took Flagyl the first time but not well. At 72 days out he got the norovirus and it caused him to relapse. This time we tried Flagyl but he threw it up immediatley. We switched him to liquid vanco and did a taper over 6 weeks with it. The vanco worked amazingly for him. I wonder if you might try this with your child. It is relatively cheap and if your insurance covers pill vanco for adults you can get them to cover liquid vanco for children with a quick letter.
Fast forward to almost my year anniversary I had a root canal that supposedly went bad. Endo said I had to take antibiotics and then 4 days later said I never needed them. Too late as c diff came back less than 24 hours after taking them. I ended up on vanco after Flagyl didn't go well this time. I started on 125 4 times a day. During this same time found out I would have to have my gallbladder out. I stayed on the vanco and had my gallbladder out. A few days after I got the severe D and violently ill even though I was on vanco. They retested me and I tested positive. I relapsed on vanco 125 and was hospitalized. They bumped it up to 250 and it got that relapase under control. I did vanco followed with Xifaxin and am now over 4 months out from that nightmare. There were times through all this where it has stolen so much of my joy with my family, my boys and my life. I too have decided to just live on the good days and try to get through the bad days. You are going to beat this! I have complete confidence as well your child. Sometimes it just takes time. I wonder if you could try the liquid vanco and do a taper with your child. It may be the lifesaver you need. My son took a long time to get back to normal and his diet had to be watched very very closely. A lot of foods gave him D after C dfif. He is now over a year and 4 months out and doing amazing! You CANNOT blame yourself for passing on c diff to your child! Guilt insinuates intent and you definitely had no intent to pass this on to your child.
Please feel free to email me anytime at my personal email address. It is anlockwood24@msn.com. I am a stay-at-hom mom fulltime but also a fulltime student so life is crazy but I promise I will get back to you! I would love to help you in any way I can!
Sincerely,
Amanda
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