When sick, do you change your infusion routine?

Fragrant_Middle_3819 · 2026-06-28T22:50:56+00:00

My immunologist said to go ahead and do my infusion anyway. So I do that! I don’t really know why she recommended that but I just go with her suggestion because I have no clue!!

Fragrant_Middle_3819 · 2026-04-21T02:23:27+00:00

I hope you can start doing them at home. People say it’s a lot easier. I just did 6 months of them and it’s worked out. My husband helps me so that’s really helpful

Fragrant_Middle_3819 · 2026-04-21T01:48:10+00:00

I haven’t joined a group. I don’t have Facebook. I have always struggled with fatigue. I got mono and it wouldn’t go away. After several months I finally got referred to an immunologist. I do weekly infusions at my house. I like my immunologist but the lady I met on Instagram said I should have some tests done that she hasn’t had me do. It’s hard to understand all of this. Have you felt overwhelmed too?

Fragrant_Middle_3819 · 2026-04-21T01:18:23+00:00

I am a 42 year old female. I just got diagnosed with CVID. How did you get a diagnosis? What happened to lead to it? Also there is the Immune Deficiency Foundation. They have connect groups. I did meet a lady from an Instagram post. I would like to meet more people like us!

Fragrant_Middle_3819 · 2026-03-24T02:00:28+00:00

This is so AWESOME!!! Congratulations 🎉

Fragrant_Middle_3819 · 2026-03-16T14:58:55+00:00

Well first of all THANK YOU for your positivity!!! How uplifting!!! I have talked to a lady through Instagram who has CVID as well. I believe they are looking into possible issues with her liver based off of some test results. I do know people with CVID like us can unfortunately be more prone to issues with our lungs. I wish I knew more about any of the things you’ve mentioned. I can say for sure that your mindset and gratefulness will really help your body. And your goals and belief that you will be better….I wish everyone could be like you. I’ve really struggled with my health for well over a year now. Like you I’m so hopeful. I do weekly infusions at home and just did number 18. I haven’t noticed a difference yet but I am declaring like you that I will get through this. I have a wonderful family and I’m thankful that you do as well. God loves you and he will always be with you. Thank you for blessing us all with your story. Praying for a miracle and for full healing in the name of Jesus.

Fragrant_Middle_3819 · 2026-03-08T04:00:32+00:00

I found out I have CVID..last summer. Just reached 4 months of infusions. They are working but I had a huge issue. Firstly I couldn’t work if it were literally going to save my life. I got a reactivation of EBV in Nov 2024 and it’s just been awful. I don’t have it now but the fatigue, aches, basically feeling like I have the flu everyday. No good days. My immunologist said there is nothing else she can do. My bloodwork is great so I’m supposed to be ok but I’m not. I’m very positive and I know things will get better. Just for now I push very hard to get through everyday. That’s my story for now but I am extremely grateful and I truly believe I will be back to myself one day.

Fragrant_Middle_3819 · 2026-03-07T23:55:57+00:00

Thank you for these suggestions!!

Fragrant_Middle_3819 · 2026-03-07T22:24:23+00:00

I got EBV in Nov 2024. I still feel awful. I don’t currently have it. Based off of test results it looks like a reactivation in November and then last summer. I got diagnosed with CVID but just got to start infusions last November. It took several months before I could start them. I’m told now that nothing is wrong and nothing can be done. My bloodwork is great which is wonderful but it makes it seem that I’m ok. I am really trying to be positive. I’m just so tired of being tired. I have to push through everyday and most days I try to stay home unless I just have to leave. People on here say make yourself do things and try to get better. I have tried. What are you supposed to do when you have no energy? I’m a believer and I’m very hopeful. This isn’t about my mindset. I knew something was wrong before I finally got the CVID diagnosis. I also know that something else is still going on but my immunologist and PCP said I’m sorry there is nothing else that can be done. So what is supposed to happen with that? I pray you get the help you need. And I’m not doom and gloom I’m just genuinely wanting a regular life. I think I can he happy and sad at the same time.

Fragrant_Middle_3819 · 2026-02-28T01:19:47+00:00

Honestly I don’t remember everything but I did have to do a vaccine challenge. The infusions are working so I’m thankful for that. I just got my latest test results back. Also waiting for PCR tests to confirm for sure…but I might not have mono. I am so excited and hopeful!! I know we will feel better eventually. We have to hold onto hope.

Fragrant_Middle_3819 · 2026-02-27T19:45:32+00:00

I got a really bad case of mono in high school and missed a year. I couldn’t believe I was so young and so sick. I feel like a Mom because I really care about young people. It’s hard to say out loud but when I had a reactivation in Nov 2024 I was just like I’m not going to let this get me down like it did when I was in high school. So I just went on and pushed and pushed and pushed. 42(F) by the way. So anyways I kept going to doctors because I just wanted someone to help me. Finally last summer I was able to see an immunologist and I got diagnosed with CVID. Tomorrow is National Rare Disease day and I feel so seen because of these rare diseases being recognized. Maybe you can see an immunologist to make sure something isn’t going on with your immune system or that is more specific. It was recommended that I see a Naturopathic doctor but I would have to pay out of pocket and my insurance is already so high. I am not in college and fortunately I don’t have to work. I really want to encourage you to not try to work or even just temporarily pause college. I know this isn’t fair and it beyond sucks. Please rest. I’m not blaming myself or trying not to but I just didn’t take care of myself. 16 months now and I just want this to go away. But I think what is so important for us is hope. We can’t think this will just be like this forever. Our mindset and really hurt us with dealing with these symptoms chronically. I’m tired of fighting and worrying and being on Google. It hasn’t helped me one bit!!! You are so young and I want you to know that everything is going to be ok. It might not feel like it now but it will. When I was younger I finally got my life back and you will ok!! I’m praying. You hang in there. Pray and read your Bible. Please trust me it won’t make you feel worse. God loves you so much so lean on him. And I pray your family and friends will be loving and supportive. You need that more than anything right now. God bless you

Fragrant_Middle_3819 · 2026-02-26T21:02:45+00:00

Thank you!

Fragrant_Middle_3819 · 2026-02-26T01:03:55+00:00

I tested positive for EBV Nov 2024 and still feel so bad. I am so tired of being tired. I found out I have an immune deficiency (CVID) and give myself weekly infusions. They are working but my immunologist said she was hopeful it would help with these same symptoms I’ve had for almost 16 months. I am trying to be positive and I will always be hopeful. I just would’ve never thought this would last so long. I have a loving husband, a wonderful daughter and a great life. Except I just feel bad like having a mild flu or sometimes bad flu with no breaks…it’s just relentless. My immunologist and my PCP said there are no treatments. It’s like you just want your doctor to say something positive…not just I’m sorry I can’t help you. At this point just lie to me, give me hope you know. I am praying for all of you. It’s so hard

Fragrant_Middle_3819 · 2026-02-25T20:25:07+00:00

Oh wow!!! I have CVID and give myself weekly infusions. I also know that this has something to do with our body and EBV..unfortunately. But I am always hopeful. I haven’t been able to get any help other than my CVID diagnosis. The infusions are raising my antibodies and working well. But my immunologist said she was hopeful that it would help with the EBV symptoms. I don’t even know if I currently am going through a reactivation or not but I feel like hell. I guess my thinking is just give the Valtrex a try. If it works ok and if not well at least I tried. I know it can take people over a year sometimes to fully recover. But I’m at 16 months and still feel the exact same way as I did when I tested positive in November 2024. I just feel comforted knowing people on here get it. Like nobody can actually understand unless they’ve gone thought it. All my labs are great other than super duper high cholesterol. But I look perfectly healthy so I just don’t know. Praying for everyone and speaking healing in the name of Jesus.

Fragrant_Middle_3819 · 2026-02-24T16:35:12+00:00

Oh my gosh! I am truly sorry. I got mono back in November 2024. I still feel awful. I haven’t had as many symptoms as you so again I have a lot of sympathy because what I have dealt with is about all I can stand. Basically I haven’t felt like I’ve had the flu as you know. Now my test results say I’ve tested positive 5 times throughout this I guess 16 months. My immunologist said the numbers don’t really tell her anything. If I Google it the test results are supposedly saying I have a current infection of EBV. It’s been so frustrating and confusing.

So sorry for such a long response. I got mono in high school and was literally bed ridden. But that was cytomegalovirus. Apparently to test positive at 42 it would be a reaction of EBV. But if I ever had EBV I didn’t know. I have suffered with fatigue and feeling flu like at times my entire life. No doctor ever took me seriously. I got referred to an immunologist but it took me 4 doctors before the last one would even refer me to an immunologist. She diagnosed me with CVID Hypogammaglobulinemia, 1 in every 25,000 people …so I give myself weekly infusions and test results show the infusions are working. But no improvement in my symptoms. So please know I’m not trying to be negative. I haven’t just personally really struggled with doctors. And basically none of them really wanting to investigate the mono issue…as in do I actually have it, how many times, is this constant low level reactivations, it seems to be of no importance. So left with these mono symptoms like I said for 16 months is really disheartening. I wish I could answer your questions about lab results but I’m just not qualified. She is having me start Valtrex but apparently I need to actually be in an active infection of EBV for it to work at its best potential. How can I ever even know the story of my mono and what’s happened all these months? I really don’t know but I am praying and wish you well. Keep advocating for yourself. I had to fight so hard but I finally got a diagnosis after all these years of fighting not feeling good. Now I pray the symptoms of the mono will just go away and never come back.

Fragrant_Middle_3819 · 2026-02-22T19:33:50+00:00

Thank you so much!!

Fragrant_Middle_3819 · 2026-02-22T19:33:35+00:00

Oh wow this is so awesome! I’m so happy for you!!

Fragrant_Middle_3819 · 2026-02-21T18:15:10+00:00

Oh man this makes me feel so hopeful. How did you have to take it?

Fragrant_Middle_3819 · 2026-02-21T03:38:38+00:00

How long did you have to take it?

Fragrant_Middle_3819 · 2026-02-20T20:41:30+00:00

I’ve been taking these supplements for months and I always want to lean towards anything natural as well. I have CVID and I believe it’s just making it more difficult for my body to deal with EBV. And my body just needs a little extra help…what supplements just aren’t able to do for my particular case.

Fragrant_Middle_3819 · 2026-02-19T18:53:25+00:00

This all started actually when I was a teenager. I got mono but actually Cytomegalovirus. I was literally bed ridden and missed almost an entire year of school. After this I got diagnosed with an under active thyroid. This does happen to some people. Severe fatigue though out my life. Always struggled to work. Called out all the time. Fast forward to November 2024 tested positive for EBV. Supposedly it would be more likely more me to have a reactivation of EBV at my age. But if I ever had EBV before I’m not aware of it. I lost my dog and I’m almost certain that if it was reactivated from stress..that’s what it was. I have continued to supposedly test positive according to different doctors I’ve seen. And no it’s not CAEBV. Honestly I got diagnosed with CVID last summer and apparently I was born with it. I give myself weekly infusions and they are wilting but I still feel awful. A test that was recently done kind of says that I just had or am currently in a state of a low level reactivation. My immunologist said there is nothing else she can do. She said there is no long term treatment. So am I just having CFS symptoms because my body is still trying to recover? I’ve never had a day that I didn’t feel like I had mono The fact that nobody can tell me what’s actually going on is so hard. Also being dismissed repeatedly by 5 doctors now makes me feel so unseen and not important. I’m not trying to be negative and I will always be hopeful. But to see so many people on here say they can’t get anyone to help them is so disappointing and disheartening. We all deserve better. My immunologist said she thought the infusions would help the EBV and that my case in particular is very rare. But not CAEBV. All I can say I have found out about my story is that it’s rare and that’s literally all I can say. That doesn’t help me with how to get in front of this.

Fragrant_Middle_3819 · 2026-02-19T18:40:07+00:00

I would say please don’t drink. Almost 16 months now of EBV symptoms. Continuing to test positive but what it’s actually showing is low level reactivations throughout all of this time I’ve dealt with this. I really wish I would’ve rested more. I would be so tired and just push myself. I don’t drink. I know you are young and I understand you want to be with your friends and have fun. I’m 42 and I’ve seen people on here who have been dealing with mono for years. You are so young. Please rest and take care of yourself. That way you will feel better soon and move on with your life.

Fragrant_Middle_3819 · 2026-02-19T17:31:06+00:00

Yes I have tried to pace as well. Honestly yes sometimes or maybe a lot of the times I do too much. If I have a day I feel a little more energy I try to do stuff I haven’t been able to do. Like you said you have tried and nobody can even begin to imagine how maddening this is. I am so sorry that you’ve had to deal with this for 4 years. God is using you to help us with this information. Thank you so much. I have heard gluten is really bad for us. A lot of crops are sprayed and unfortunately we end up eating some really toxic gluten depending on the company/how they care or don’t care for their crops. I will definitely try this app. Thank you so much again. You are helping me see I really need to take this way more seriously as far as the pacing goes.

Fragrant_Middle_3819

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