Well, I've been trying not to admit it, but I have the herpes virus. I take acyclovir, but I have outbreaks. I've read on Wikipedia that recurrent herpes infections are a complaint. I'm assuming that if I suppress my immune system, that herpes will run rampant. I have a 'shingles outbreak' on my right arm, I had herpes a couple years before it was diagnosed properly, because I get it on my arm.
@Erinmfs, @becsbuddy, I am taking cellcept (mycophenolate mofetil) to prevent rejection of my liver and kidney transplant. I have not had any bothersome side effects, although my transplant team keeps a close watch on my labs, and have advised about sun protection and about staying up-to-date with my routine health screenings. I take mine at 8 AM and at 8 PM. I don't know whether taking it got autoimmune conditions has a different effect that taking it for transplant, but I have taken it for 12 years. If you have any questions, I'll try to help.
Well, I've been trying not to admit it, but I have the herpes virus. I take acyclovir, but I have outbreaks. I've read on Wikipedia that recurrent herpes infections are a complaint. I'm assuming that if I suppress my immune system, that herpes will run rampant. I have a 'shingles outbreak' on my right arm, I had herpes a couple years before it was diagnosed properly, because I get it on my arm.
Molly, stigma can make it really hard to admit having a virus like the herpes virus. I'm glad you did. Have you talked to your doctor about your concerns with recurrent infections while taking a drug that suppresses your immune system?
This may be a good new discussion to start in the Autoimmune Disease group to get more thoughts from fellow members.
Well, I've been trying not to admit it, but I have the herpes virus. I take acyclovir, but I have outbreaks. I've read on Wikipedia that recurrent herpes infections are a complaint. I'm assuming that if I suppress my immune system, that herpes will run rampant. I have a 'shingles outbreak' on my right arm, I had herpes a couple years before it was diagnosed properly, because I get it on my arm.
Hi @Erinmfs have you tried avoiding foods containing high amounts of the amino acid L-Arginine? The herpes virus thrives on the amino acid. Some foods to avoid will be caffeine, seeds and nuts, and rice to mention a few. The amino acid L-Lysine will counteract the L-Arginine. Perhaps taking the supplement L-Lysine will help decrease the number of outbreaks. Talk to your physician about the supplement. Does taking an antiviral medication give you a headache? For me I preferred the outbreak rather than the headaches. The antiviral medication is not a cure. It only lessens the cycle of the virus. I did not see a significant difference with the medication. The virus becomes dormant in the body. It needs L-Arginine to thrive. I saw a better solution through changing my diet. For a while I took the supplement L-Lysine daily and it did decrease my outbreaks. I later learned to better control my outbreaks through diet only. I not only watched what I ate but also how much I ate. So far it has worked out really well. I may get an outbreak every 3 years. Wish you well.
I posted in Bones Joints & Muscles, but it doesn't appear on the main news feed home screen as a new posting? I don't think I've ever seen this group before?
I posted in Bones Joints & Muscles, but it doesn't appear on the main news feed home screen as a new posting? I don't think I've ever seen this group before?
@Erinmfs If you click on the words "Mayo Clinic Connect" in the upper left you will get to a screen that lists current posts. Right near where you can search for a discussion, there is a drop down menu where you can choose "My Groups". that should list groups and discussions where you have posted. You can also click on your icon photo on the top right and go to your profile. Click "Profile & settings" and you will see a screen that lists any discussions you started. If you click "Comments" on the left side, you will see comments that you have made. Sometimes the Moderators combine discussions about the same topics into a single discussion, so it could have been moved.
@Erinmfs If you click on the words "Mayo Clinic Connect" in the upper left you will get to a screen that lists current posts. Right near where you can search for a discussion, there is a drop down menu where you can choose "My Groups". that should list groups and discussions where you have posted. You can also click on your icon photo on the top right and go to your profile. Click "Profile & settings" and you will see a screen that lists any discussions you started. If you click "Comments" on the left side, you will see comments that you have made. Sometimes the Moderators combine discussions about the same topics into a single discussion, so it could have been moved.
@Erinmfs I checked the discussion link and Colleen, the director and a moderator on Connect did move your post into that discussion. Here is the message she sent you to let you know the post was moved. They do combine things into existing discussions of similar issues because mentors and patients like to follow certain discussions and she wanted people to see your post who have interest in discussing the topic. https://connect.mayoclinic.org/comment/623277/
Hi Erin, we used to automatically make someone a member of a group if they posted to that group or were @mentioned in the group. But then people found they were getting unwanted notifications for groups they didn't purposefully "Follow".
I locked myself Erinmfs out of connect. My smartphone saved me, it remained logged in and I was able to reset my password. In the interim, I created a 2nd logon, NiceHat. NiceHat receives a summary email daily, erinmfs does not. I tried resetting those email settings in my erinmfs profile, that didn’t work?
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Well, I've been trying not to admit it, but I have the herpes virus. I take acyclovir, but I have outbreaks. I've read on Wikipedia that recurrent herpes infections are a complaint. I'm assuming that if I suppress my immune system, that herpes will run rampant. I have a 'shingles outbreak' on my right arm, I had herpes a couple years before it was diagnosed properly, because I get it on my arm.
Thank you so much, Rosemary! I’m just counting the days until i get off of prednisone!
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2 ReactionsMolly, stigma can make it really hard to admit having a virus like the herpes virus. I'm glad you did. Have you talked to your doctor about your concerns with recurrent infections while taking a drug that suppresses your immune system?
This may be a good new discussion to start in the Autoimmune Disease group to get more thoughts from fellow members.
Hi @Erinmfs have you tried avoiding foods containing high amounts of the amino acid L-Arginine? The herpes virus thrives on the amino acid. Some foods to avoid will be caffeine, seeds and nuts, and rice to mention a few. The amino acid L-Lysine will counteract the L-Arginine. Perhaps taking the supplement L-Lysine will help decrease the number of outbreaks. Talk to your physician about the supplement. Does taking an antiviral medication give you a headache? For me I preferred the outbreak rather than the headaches. The antiviral medication is not a cure. It only lessens the cycle of the virus. I did not see a significant difference with the medication. The virus becomes dormant in the body. It needs L-Arginine to thrive. I saw a better solution through changing my diet. For a while I took the supplement L-Lysine daily and it did decrease my outbreaks. I later learned to better control my outbreaks through diet only. I not only watched what I ate but also how much I ate. So far it has worked out really well. I may get an outbreak every 3 years. Wish you well.
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Hug
1 ReactionI posted in Bones Joints & Muscles, but it doesn't appear on the main news feed home screen as a new posting? I don't think I've ever seen this group before?
https://connect.mayoclinic.org/discussion/plantar-fasciitis-1/@Erinmfs If you click on the words "Mayo Clinic Connect" in the upper left you will get to a screen that lists current posts. Right near where you can search for a discussion, there is a drop down menu where you can choose "My Groups". that should list groups and discussions where you have posted. You can also click on your icon photo on the top right and go to your profile. Click "Profile & settings" and you will see a screen that lists any discussions you started. If you click "Comments" on the left side, you will see comments that you have made. Sometimes the Moderators combine discussions about the same topics into a single discussion, so it could have been moved.
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2 ReactionsI see, I've never selected that button before. I would assume that if I posted in a group, that it was now 'my group, but I guess not!
@Erinmfs I checked the discussion link and Colleen, the director and a moderator on Connect did move your post into that discussion. Here is the message she sent you to let you know the post was moved. They do combine things into existing discussions of similar issues because mentors and patients like to follow certain discussions and she wanted people to see your post who have interest in discussing the topic. https://connect.mayoclinic.org/comment/623277/
Hi Erin, we used to automatically make someone a member of a group if they posted to that group or were @mentioned in the group. But then people found they were getting unwanted notifications for groups they didn't purposefully "Follow".
If you would like the Bones, Joints & Muscles group to appear in your "My Groups" feed, please follow Bones, Joints & Muscles https://connect.mayoclinic.org/group/arthritis-and-joint-conditions-268850/
See your profile here https://connect.mayoclinic.org/member/00-dfd0c652e369a93d90092/groups-and-pages/#ch-tab-navigation to see the groups and blogs you currently follow.
I love that you are using the homepage as your main feed. That is what we intended with the new design.
- Improved Homepage: Your new Connect home base https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/improved-homepage-your-new-connect-home-base/
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2 ReactionsI locked myself Erinmfs out of connect. My smartphone saved me, it remained logged in and I was able to reset my password. In the interim, I created a 2nd logon, NiceHat. NiceHat receives a summary email daily, erinmfs does not. I tried resetting those email settings in my erinmfs profile, that didn’t work?
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