My daugher, age 17 w/cf, was recently diagnosed with two things: atypical micobacterium and Factor V Leiden (a clotting disorder). She needs 8 weeks of IV meds for the micobacterium but cannot tolerate IVs for longer than a week due to the clotting disorder which causes severe phlebitis and small clots. Docs are not sure a port is a good idea with her history. Does anyone else have these conditions? How are you being treated? Is there anything oral or nebulized. Thank you for your help.
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Factor V Leiden
- Thread starter snow
- Start date
My daugher, age 17 w/cf, was recently diagnosed with two things: atypical micobacterium and Factor V Leiden (a clotting disorder). She needs 8 weeks of IV meds for the micobacterium but cannot tolerate IVs for longer than a week due to the clotting disorder which causes severe phlebitis and small clots. Docs are not sure a port is a good idea with her history. Does anyone else have these conditions? How are you being treated? Is there anything oral or nebulized. Thank you for your help.
My kids also have a mycobacterium. They are on 3 antibiotics long term, two oral and on nebulized. Which kind of bug does your daughter have? I have never heard of the Factor V Leiden, but that certainly makes treating the bugs more complicated.
Nothing is easy! Maybe someone else has heard it. My kids had side effects with the first antibiotic and then more with the second.
Good luck
jane
Nothing is easy! Maybe someone else has heard it. My kids had side effects with the first antibiotic and then more with the second.
Good luck
jane
My kids also have a mycobacterium. They are on 3 antibiotics long term, two oral and on nebulized. Which kind of bug does your daughter have? I have never heard of the Factor V Leiden, but that certainly makes treating the bugs more complicated.
Nothing is easy! Maybe someone else has heard it. My kids had side effects with the first antibiotic and then more with the second.
Good luck
jane
Nothing is easy! Maybe someone else has heard it. My kids had side effects with the first antibiotic and then more with the second.
Good luck
jane
Jane, Steph and Melissa. Thank you so much for your reply. Yes, I would love to be in touch with the person on anticoagulates. And I truly appreciate knowing there are orals out there. I'm not sure what "bug" it is exactly... however they did say it acted like TB... general malaise, coughing up blood, fever, night sweats. Your messages give me great hope. Best wishes to all of you. Snow.
Jane, Steph and Melissa. Thank you so much for your reply. Yes, I would love to be in touch with the person on anticoagulates. And I truly appreciate knowing there are orals out there. I'm not sure what "bug" it is exactly... however they did say it acted like TB... general malaise, coughing up blood, fever, night sweats. Your messages give me great hope. Best wishes to all of you. Snow.
Hi Snow,
I have had Mycobacterium Avium Complex (MAC) for about 8 years now and they started to treat it once a long time ago. I was taking Rifampin I think that was the only med I took for it at the time. Just so you know....if your daughter is taking Rifampin she **HAS TO** take it religously every single day and not get lazy with it. I was an example of being lazy with my meds since I take so many pills daily, I get stubborn and tired of it sometimes and so I took Rifampin intermittedly for a couple of years. You don't want to do that because taking that drug intermittedly can cause kidney failure. Not to scare you, but you need to know that! They didn't realize this fact until it happened to me. Now I believe it's a warning on the bottles, that's what they said they were going to start doing anyways. By the way, Rifampin is suppose to be one of the BEST drugs to treat MAC, I just ended up having an allergic reaction and wasn't responsible with taking it when I should have.
For me, I stopped all MAC drugs after that episode which was in 2001. I haven't gone back on anything since, but they're wanting to start me on some other ones now to start treating it again. Instead of Rifampin, there are like 4-5 other meds you can take.
Also, there are about 8 or so different strands of Mycobacteriums. I have the Avium Complex one. So treatments probably differ depending on which one she has. Below are some web sites with more information about Mycobacteriums. I've recently heard of some people's treatments getting rid of the bacteria, so that's a good thing.
It is also referred to as Nontuberculous Mycobacteria (NTM). More commonly these bacteria are found in AIDS patients because of their lowered immune systems, but having CF also makes us succeptible because of our lowered immune systems. I've read that it's an airborne bug that is usually transferred by some type of water environment, ie: indoor hot tubs, outdoor drain systems, etc.
Good luck and I hope all goes well !!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
http://www.ntminfo.com/
http://www.cdc.gov/nchstp/tb/Laboratory_Services/default.htm
I have had Mycobacterium Avium Complex (MAC) for about 8 years now and they started to treat it once a long time ago. I was taking Rifampin I think that was the only med I took for it at the time. Just so you know....if your daughter is taking Rifampin she **HAS TO** take it religously every single day and not get lazy with it. I was an example of being lazy with my meds since I take so many pills daily, I get stubborn and tired of it sometimes and so I took Rifampin intermittedly for a couple of years. You don't want to do that because taking that drug intermittedly can cause kidney failure. Not to scare you, but you need to know that! They didn't realize this fact until it happened to me. Now I believe it's a warning on the bottles, that's what they said they were going to start doing anyways. By the way, Rifampin is suppose to be one of the BEST drugs to treat MAC, I just ended up having an allergic reaction and wasn't responsible with taking it when I should have.
For me, I stopped all MAC drugs after that episode which was in 2001. I haven't gone back on anything since, but they're wanting to start me on some other ones now to start treating it again. Instead of Rifampin, there are like 4-5 other meds you can take.
Also, there are about 8 or so different strands of Mycobacteriums. I have the Avium Complex one. So treatments probably differ depending on which one she has. Below are some web sites with more information about Mycobacteriums. I've recently heard of some people's treatments getting rid of the bacteria, so that's a good thing.
It is also referred to as Nontuberculous Mycobacteria (NTM). More commonly these bacteria are found in AIDS patients because of their lowered immune systems, but having CF also makes us succeptible because of our lowered immune systems. I've read that it's an airborne bug that is usually transferred by some type of water environment, ie: indoor hot tubs, outdoor drain systems, etc.
Good luck and I hope all goes well !!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
http://www.ntminfo.com/
http://www.cdc.gov/nchstp/tb/Laboratory_Services/default.htm
Hi Snow,
I have had Mycobacterium Avium Complex (MAC) for about 8 years now and they started to treat it once a long time ago. I was taking Rifampin I think that was the only med I took for it at the time. Just so you know....if your daughter is taking Rifampin she **HAS TO** take it religously every single day and not get lazy with it. I was an example of being lazy with my meds since I take so many pills daily, I get stubborn and tired of it sometimes and so I took Rifampin intermittedly for a couple of years. You don't want to do that because taking that drug intermittedly can cause kidney failure. Not to scare you, but you need to know that! They didn't realize this fact until it happened to me. Now I believe it's a warning on the bottles, that's what they said they were going to start doing anyways. By the way, Rifampin is suppose to be one of the BEST drugs to treat MAC, I just ended up having an allergic reaction and wasn't responsible with taking it when I should have.
For me, I stopped all MAC drugs after that episode which was in 2001. I haven't gone back on anything since, but they're wanting to start me on some other ones now to start treating it again. Instead of Rifampin, there are like 4-5 other meds you can take.
Also, there are about 8 or so different strands of Mycobacteriums. I have the Avium Complex one. So treatments probably differ depending on which one she has. Below are some web sites with more information about Mycobacteriums. I've recently heard of some people's treatments getting rid of the bacteria, so that's a good thing.
It is also referred to as Nontuberculous Mycobacteria (NTM). More commonly these bacteria are found in AIDS patients because of their lowered immune systems, but having CF also makes us succeptible because of our lowered immune systems. I've read that it's an airborne bug that is usually transferred by some type of water environment, ie: indoor hot tubs, outdoor drain systems, etc.
Good luck and I hope all goes well !!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
http://www.ntminfo.com/
http://www.cdc.gov/nchstp/tb/Laboratory_Services/default.htm
I have had Mycobacterium Avium Complex (MAC) for about 8 years now and they started to treat it once a long time ago. I was taking Rifampin I think that was the only med I took for it at the time. Just so you know....if your daughter is taking Rifampin she **HAS TO** take it religously every single day and not get lazy with it. I was an example of being lazy with my meds since I take so many pills daily, I get stubborn and tired of it sometimes and so I took Rifampin intermittedly for a couple of years. You don't want to do that because taking that drug intermittedly can cause kidney failure. Not to scare you, but you need to know that! They didn't realize this fact until it happened to me. Now I believe it's a warning on the bottles, that's what they said they were going to start doing anyways. By the way, Rifampin is suppose to be one of the BEST drugs to treat MAC, I just ended up having an allergic reaction and wasn't responsible with taking it when I should have.
For me, I stopped all MAC drugs after that episode which was in 2001. I haven't gone back on anything since, but they're wanting to start me on some other ones now to start treating it again. Instead of Rifampin, there are like 4-5 other meds you can take.
Also, there are about 8 or so different strands of Mycobacteriums. I have the Avium Complex one. So treatments probably differ depending on which one she has. Below are some web sites with more information about Mycobacteriums. I've recently heard of some people's treatments getting rid of the bacteria, so that's a good thing.
It is also referred to as Nontuberculous Mycobacteria (NTM). More commonly these bacteria are found in AIDS patients because of their lowered immune systems, but having CF also makes us succeptible because of our lowered immune systems. I've read that it's an airborne bug that is usually transferred by some type of water environment, ie: indoor hot tubs, outdoor drain systems, etc.
Good luck and I hope all goes well !!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
http://www.ntminfo.com/
http://www.cdc.gov/nchstp/tb/Laboratory_Services/default.htm
Wow Kelly, 8 years? I can't imagine how difficult that must be. Thank you for your openness and highly informative reply. We hopefully find out today which strain she has; it will be really helpful to know about some of the meds so we know what to ask and maybe what we're up against. I'll definitely check out the websites. Good luck to you too! Snow.
I have Factor V Leiden.... I also have a port, but we just have to flush it more often to make sure it doesn't get any blood clots in it. I'm also on Plavix for the hyperclotting. Kind of confused as to why your daughter can't be on IV's for more than a week... I usually do at least two weeks of antibiotics when I'm sick. Hope this helps.
Hi Snow
I have been treated for suspected V Leiden. My brother has it. This is also a hereditory thing. I'm sorry your daughter has this (as if CF isnt enough!). What I do know is you must never use a birth control pill as this can cause the clotting to get worse.
I hope things go better for your daughter. You're in my prayers.
I have been treated for suspected V Leiden. My brother has it. This is also a hereditory thing. I'm sorry your daughter has this (as if CF isnt enough!). What I do know is you must never use a birth control pill as this can cause the clotting to get worse.
I hope things go better for your daughter. You're in my prayers.
Thanks Chelsey for your reply. I knew there must be someone out there with both Factor V Leiden and cf. And you are about the same age too! She cannot tolerate IVs due to severe plebitis caused from either the toxicity of the meds or superficial blood clots. How are you doing with your port? Is it a pain? Is having a port reason you can be on antibiotics for two weeks? I hope you are doing well.
Snow. p.s. Love your quote by the way.
Snow. p.s. Love your quote by the way.
Hi Joanne. South Africa. Wow! I love this website. How are you being treated? We see the doctor next week to find out what she needs to do. Does your daughter, Monica, also have it? I understand you cannot take estrogen based birth control but can take progestin, however being on so many antibiotics lessons the effectiveness of any birth control. I hope things are well for your daughter too. Thanks for your prayers; your family is added to mine.