Living a nightmare!

PF

New member
<br>This is a great forum & I received helpful suggestions & wonderful support with this post in June 2010:<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>PF</b></i> I'm really hoping that someone else has had a similar experience and can offer some advice as I'm feeling so alone right now. My partner who I thought was my soulmate after being together for 11 years left me over a year ago and I became increasingly isolated and depressed which caused chronic insomnia and ultimately an impaired immune system. I was lonely and met a guy online. I deeply regret that now as it turned out I got HSV 1 (the virus that causes cold sores) on my lips and tongue from just kissing him. I have been suffering from burning, tingling on my entire mouth (including the surrounding skin) and tongue and drying peeling lips for 3 months now despite being on an antiviral (Valtrex)and topical cream. My doctor says it's because I waited too long to see him (5 days) and so the medication was started too late. The antiviral only stops multiplication, it's up to the immune system to control the virus. I feel desperately unlucky and embarrassed as I'm not promiscuous. I've tried Lysine too. I haven't been fighting CF for 37 years only to succumb this way. Anyone else out there have prolonged HSV symptoms? Any suggestions/comments truly welcomed.</end quote></div>In September 2010 I had a massive outbreak of sores on my mouth, nose corners, chin & cheeks. Eventually it improved & I thought I'd managed to control the virus by discouraging it by icing the areas, applying alcohol & aloe vera. However recently it has spread to my eyes forming corneal ulcers (which may cause blindness) & almost all my fingers which I can't understand as I'm OCD when it comes to washing/disinfecting hands & not touching my face. The protocol which was successful on my face is not working on my fingers which are so swollen I can't bend them & I keep them bandaged for fear of spreading this virus anywhere else. I feel so hopeless. I've managed my mycobacterium for 15 years, malaria for 10 years - each time I get some new infection I think it's over but I prevail. But this time is different. Anyone else have Herpes Simplex 1 spread to the eyes or fingers? Any personal experiences or suggestions?
 

PF

New member
<br>This is a great forum & I received helpful suggestions & wonderful support with this post in June 2010:<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>PF</b></i> I'm really hoping that someone else has had a similar experience and can offer some advice as I'm feeling so alone right now. My partner who I thought was my soulmate after being together for 11 years left me over a year ago and I became increasingly isolated and depressed which caused chronic insomnia and ultimately an impaired immune system. I was lonely and met a guy online. I deeply regret that now as it turned out I got HSV 1 (the virus that causes cold sores) on my lips and tongue from just kissing him. I have been suffering from burning, tingling on my entire mouth (including the surrounding skin) and tongue and drying peeling lips for 3 months now despite being on an antiviral (Valtrex)and topical cream. My doctor says it's because I waited too long to see him (5 days) and so the medication was started too late. The antiviral only stops multiplication, it's up to the immune system to control the virus. I feel desperately unlucky and embarrassed as I'm not promiscuous. I've tried Lysine too. I haven't been fighting CF for 37 years only to succumb this way. Anyone else out there have prolonged HSV symptoms? Any suggestions/comments truly welcomed.</end quote>In September 2010 I had a massive outbreak of sores on my mouth, nose corners, chin& cheeks. Eventually it improved & I thought I'd managed to control the virus by discouraging it by icing the areas, applying alcohol & aloe vera. However recently it has spread to my eyes forming corneal ulcers (which may cause blindness) & almost all my fingers which I can't understand as I'm OCD when it comes to washing/disinfecting hands & not touching my face. The protocol which was successful on my face is not working on my fingers which are so swollen I can't bend them & I keep them bandaged for fear of spreading this virus anywhere else. I feel so hopeless. I've managed my mycobacteriumfor 15 years, malaria for 10 years - each time I get some new infection I think it's over but I prevail. But this time is different. Anyone else have Herpes Simplex 1 spread to the eyes or fingers? Any personal experiences or suggestions?
 

PF

New member
<p><br>This is a great forum & I received helpful suggestions & wonderful support with this post in June 2010:<p><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>PF</b></i> I'm really hoping that someone else has had a similar experience and can offer some advice as I'm feeling so alone right now. My partner who I thought was my soulmate after being together for 11 years left me over a year ago and I became increasingly isolated and depressed which caused chronic insomnia and ultimately an impaired immune system. I was lonely and met a guy online. I deeply regret that now as it turned out I got HSV 1 (the virus that causes cold sores) on my lips and tongue from just kissing him. I have been suffering from burning, tingling on my entire mouth (including the surrounding skin) and tongue and drying peeling lips for 3 months now despite being on an antiviral (Valtrex)and topical cream. My doctor says it's because I waited too long to see him (5 days) and so the medication was started too late. The antiviral only stops multiplication, it's up to the immune system to control the virus. I feel desperately unlucky and embarrassed as I'm not promiscuous. I've tried Lysine too. I haven't been fighting CF for 37 years only to succumb this way. Anyone else out there have prolonged HSV symptoms? Any suggestions/comments truly welcomed.</end quote><p>In September 2010 I had a massive outbreak of sores on my mouth, nose corners, chin& cheeks. Eventually it improved & I thought I'd managed to control the virus by discouraging it by icing the areas, applying alcohol & aloe vera. However recently it has spread to my eyes forming corneal ulcers (which may cause blindness) & almost all my fingers which I can't understand as I'm OCD when it comes to washing/disinfecting hands & not touching my face. The protocol which was successful on my face is not working on my fingers which are so swollen I can't bend them & I keep them bandaged for fear of spreading this virus anywhere else. <p>I feel so hopeless. I've managed my mycobacteriumfor 15 years, malaria for 10 years - each time I get some new infection I think it's over but I prevail. But this time is different. Anyone else have Herpes Simplex 1 spread to the eyes or fingers? Any personal experiences or suggestions?
 

JenWren

New member
Hi:  Im sorry you having such a miserable time.  I noticed no one had answered so I thought I would drop a line. <br><br>I do have herpes sores of the lip kind.  Mine is brought out by stress of any kind. So depression is going to help.  But as soon as I feel the tingling on my lip I put Acyclovir on it.  That is the topical cream.  I personally Have only had one really bad breakout when I was a young child.  Then it showed up again in college.  My first breakout as a child was lips inside my throat and cheeks. Couldn't eat had to drink everything through a straw.  The virus settled down on it own.  We all carry the virus and it lays dormant inside our bodies till it is triggered by stress.  I haven't personally heard of fingers and such as being part of it.  <br><br>I hope you can get help for your depression while you treat this other stuff going on.  Perhaps if you get your depression under control these other manifestations which are real would settle down and become less severe.  <br><br>That is my hope for you.  <br><br>JenWren<br>CF CFRD 51yrs <br>Married 28yrs.  <br><br>
 

JenWren

New member
Hi: Im sorry you having such a miserable time. I noticed no one had answered so I thought I would drop a line. <br><br>I do have herpes sores of the lip kind. Mine is brought out by stress of any kind. So depression is going to help. But as soon as I feel the tingling on my lip I put Acyclovir on it. That is the topical cream. I personally Have only had one really bad breakout when I was a young child. Then it showed up again in college. My first breakout as a child was lips inside my throat and cheeks. Couldn't eat had to drink everything through a straw. The virus settled down on it own. We all carry the virus and it lays dormant inside our bodies till it is triggered by stress. I haven't personally heard of fingers and such as being part of it. <br><br>I hope you can get help for your depression while you treat this other stuff going on. Perhaps if you get your depression under control these other manifestations which are real would settle down and become less severe. <br><br>That is my hope for you. <br><br>JenWren<br>CF CFRD 51yrs <br>Married 28yrs. <br><br>
 

JenWren

New member
Hi: Im sorry you having such a miserable time. I noticed no one had answered so I thought I would drop a line. <br><br>I do have herpes sores of the lip kind. Mine is brought out by stress of any kind. So depression is going to help. But as soon as I feel the tingling on my lip I put Acyclovir on it. That is the topical cream. I personally Have only had one really bad breakout when I was a young child. Then it showed up again in college. My first breakout as a child was lips inside my throat and cheeks. Couldn't eat had to drink everything through a straw. The virus settled down on it own. We all carry the virus and it lays dormant inside our bodies till it is triggered by stress. I haven't personally heard of fingers and such as being part of it. <br><br>I hope you can get help for your depression while you treat this other stuff going on. Perhaps if you get your depression under control these other manifestations which are real would settle down and become less severe. <br><br>That is my hope for you. <br><br>JenWren<br>CF CFRD 51yrs <br>Married 28yrs. <br><br>
 

Giggles

New member
Sorry to hear you are going through all this..... Since it is such a bad outbreak in so many different areas I would really go see a doc and they can give you meds to get rid of it. You might need something oral. I agree too that stress, depression etc. does cause cold sores etc to form. I hope you can get  in a better place with that too. Hang in there!<br>
 

Giggles

New member
Sorry to hear you are going through all this..... Since it is such a bad outbreak in so many different areas I would really go see a doc and they can give you meds to get rid of it. You might need something oral. I agree too that stress, depression etc. does cause cold sores etc to form. I hope you can get in a better place with that too. Hang in there!<br>
 

Giggles

New member
Sorry to hear you are going through all this..... Since it is such a bad outbreak in so many different areas I would really go see a doc and they can give you meds to get rid of it. You might need something oral. I agree too that stress, depression etc. does cause cold sores etc to form. I hope you can get in a better place with that too. Hang in there!<br>
 

theLostMiler

New member
I also suffer from cold sores, but have never had such a miserable outbreak. Reading it I can only imagine how you feel as I feel like the ugly duckling when I have my outbreaks. I often have multiple ones that pop up and sometimes they do the "rash" thing up off my lips as well. The worst one I had was during college and it was when I asked my CF for something. I use an RX cream called "Denavir" and put it on at the FIRST sign of a cold sore, it does not help if its too far along or if its on my skin more than my actual lip I have noticed. I have a friend that uses the RX valtrex like you said.
<br>
<br>It honestly sounds like you are doing everything right. Icing the areas, I often use ibuprofen to help with the pain of them. I sometimes go out and buy the iodine antiseptic stuff to try to help keep them clean. I use neosporin, I take lysene, I take my vitamins and vitaming D3 supplement more...
<br>
<br>I am so sorry though. Cold sores are horribly painful and embarrassing and I cant imagine how painful it is to have it in your eyes and on your hands. I have always been paranoid (once I learned in high school that you can transfer it to your genitals) that I was going to somehow pass it down there. I use different towels when i have a cold sore, I wash my hands BEFORE and after going to the bathroom, it just adds more stress though.
<br>
<br>Definitely thinking of you though. I have mycobacterium abscessus too, you can beat that you can be the stupid cold sore virus. I am hoping you get a break and then the medication you have prevents future outbreaks. <br><br>Speaking of M.A. I get fevers a lot and that is usually a trigger for my cold sores, do you get daily fevers and that might be why you have such a severe case? 
 

theLostMiler

New member
I also suffer from cold sores, but have never had such a miserable outbreak. Reading it I can only imagine how you feel as I feel like the ugly duckling when I have my outbreaks. I often have multiple ones that pop up and sometimes they do the "rash" thing up off my lips as well. The worst one I had was during college and it was when I asked my CF for something. I use an RX cream called "Denavir" and put it on at the FIRST sign of a cold sore, it does not help if its too far along or if its on my skin more than my actual lip I have noticed. I have a friend that uses the RX valtrex like you said.
<br>
<br>It honestly sounds like you are doing everything right. Icing the areas, I often use ibuprofen to help with the pain of them. I sometimes go out and buy the iodine antiseptic stuff to try to help keep them clean. I use neosporin, I take lysene, I take my vitamins and vitaming D3 supplement more...
<br>
<br>I am so sorry though. Cold sores are horribly painful and embarrassing and I cant imagine how painful it is to have it in your eyes and on your hands. I have always been paranoid (once I learned in high school that you can transfer it to your genitals) that I was going to somehow pass it down there. I use different towels when i have a cold sore, I wash my hands BEFORE and after going to the bathroom, it just adds more stress though.
<br>
<br>Definitely thinking of you though. I have mycobacterium abscessus too, you can beat that you can be the stupid cold sore virus. I am hoping you get a break and then the medication you have prevents future outbreaks. <br><br>Speaking of M.A. I get fevers a lot and that is usually a trigger for my cold sores, do you get daily fevers and that might be why you have such a severe case?
 

theLostMiler

New member
<p>I also suffer from cold sores, but have never had such a miserable outbreak. Reading it I can only imagine how you feel as I feel like the ugly duckling when I have my outbreaks. I often have multiple ones that pop up and sometimes they do the "rash" thing up off my lips as well. The worst one I had was during college and it was when I asked my CF for something. I use an RX cream called "Denavir" and put it on at the FIRST sign of a cold sore, it does not help if its too far along or if its on my skin more than my actual lip I have noticed. I have a friend that uses the RX valtrex like you said.
<br>
<br>It honestly sounds like you are doing everything right. Icing the areas, I often use ibuprofen to help with the pain of them. I sometimes go out and buy the iodine antiseptic stuff to try to help keep them clean. I use neosporin, I take lysene, I take my vitamins and vitaming D3 supplement more...
<br>
<br>I am so sorry though. Cold sores are horribly painful and embarrassing and I cant imagine how painful it is to have it in your eyes and on your hands. I have always been paranoid (once I learned in high school that you can transfer it to your genitals) that I was going to somehow pass it down there. I use different towels when i have a cold sore, I wash my hands BEFORE and after going to the bathroom, it just adds more stress though.
<br>
<br>Definitely thinking of you though. I have mycobacterium abscessus too, you can beat that you can be the stupid cold sore virus. I am hoping you get a break and then the medication you have prevents future outbreaks. <br><br>Speaking of M.A. I get fevers a lot and that is usually a trigger for my cold sores, do you get daily fevers and that might be why you have such a severe case?<p>
 

ehtansky21

New member
If you haven't already, I would look into high doses of really good quality Vitamin C for the cold sores and there is a product I have heard of that has great results with malaria, I need to find the name for you and i will get back to you.

blessings,
missa
 

ehtansky21

New member
If you haven't already, I would look into high doses of really good quality Vitamin C for the cold sores and there is a product I have heard of that has great results with malaria, I need to find the name for you and i will get back to you.

blessings,
missa
 

ehtansky21

New member
If you haven't already, I would look into high doses of really good quality Vitamin C for the cold sores and there is a product I have heard of that has great results with malaria, I need to find the name for you and i will get back to you.
<br />
<br />blessings,
<br />missa
<br />
 

ehtansky21

New member
okay it is called Miracle Mineral Supplement...I have heard some REALLY good results from it...I would suggest just looking it up at least to see if it is an option for getting rid of the malaria!!!!

blessings,
missa
 

ehtansky21

New member
okay it is called Miracle Mineral Supplement...I have heard some REALLY good results from it...I would suggest just looking it up at least to see if it is an option for getting rid of the malaria!!!!

blessings,
missa
 

ehtansky21

New member
okay it is called Miracle Mineral Supplement...I have heard some REALLY good results from it...I would suggest just looking it up at least to see if it is an option for getting rid of the malaria!!!!
<br />
<br />blessings,
<br />missa
 

mom2brooke

New member
My daughter gets fever blisters really bad.  Her pediatrician gave her a prescription for Zovirax and it is a miracle drug.  If used properly, they don't get near as bad, and heal in about half of the time.  Worth checking into.<br>
 

mom2brooke

New member
My daughter gets fever blisters really bad. Her pediatrician gave her a prescription for Zovirax and it is a miracle drug. If used properly, they don't get near as bad, and heal in about half of the time. Worth checking into.<br>
 
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