Community Chat

[gidgetgh]

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@tsavorite wrote:

@gidgetgh  hope you are feeling abit better today since starting the antibiotics.  My Internist's office called with my lab results today and thyroid levels are the same...good but the EBV is active again....not super high like my last major bout 2yrs ago but high to enough to be active again.  They didn't say anything about antivirals...this was the staff calling and they were closing (at noon) so I haven't had a chance to speak to the doctor.  

Planning on calling them Monday....going to request he let me at least try a antiviral medication since this is something that is reactivated AGAIN.  Last time took me 1 1/2yrs to begin to feel like it might have calmed down and now here I am again 6mo's or so later and it's back again.  

I suspect what my previous doctor dx me with chronic fatigue is this EBV reactivated over and over.  

I am not very hopeful he will prescribe as that should have been done today...but I will directly ask and see on Monday.  If he won't then I will ask him to refer me to a specialist infectious disease & chronic fatigue.  

I did explain to him about this stuff last week and that my quality of life is poor due to the fatigue and constantly being sick.  It's hard to function when you feel like you have the flu and your throat is raw painful and feels like the glands are swollen up.  

I am just down and disgusted about it....I will try and get my act together for Monday.

I have nobody in my life that understands....or is interested to be truthful.  

At least my other lab work was all healthy and normal....and now I know what is really going on with me....chronic EBV.  Thanks again for sharing your struggles with this.

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@tsavorite - feel free to talk to me anytime.  On the EBV, I usually just tell people, if necessary, that I have Chronic Fatigue Syndrome since people have heard of that.  

When you're in a "flare", it's very difficult.  My doctor way back then told me to really control my stress as the virus loves to see stress.  Now, that's easier said than done as there are some stressors in life that you just can't control.  But on other things, you can.  I get too overwhelmed and stressed if I have too many appointments and "have to do" things clumped too close together so I try to really space things out if I can.

Antivials have been a godsend for me.  I don't know that they work for everyone, but for me they've helped me have a somewhat normal, if more sedate, life.

Take care of yourself and I'm happy to listen any time.

[gidgetgh]

Thought I'd check in.  Yesterday I wasn't feeling very well still and the weather here was yucky so we just stayed home.  I'm hoping that once I get going this morning I'll be better.  I have had a few coughing spells and that took a lot of my energy yesterday.  No coughing so far this morning and I'm hoping it stays that way.

I have a few errands I really have to run today so we'll see how I do when I'm "out in the wild" and doing stuff.

[tsavorite]

@gidgetgh Ya stress is a big one for me too....I had a bad night...worse time to have words with spouse as it goes badly.  I keep sharing with him what's going on but he just doesn't have any interest.  We have things coming up....of course hoildays...family events to attend Thanksgiving at my home (just my son's) so very small but still I have no energy to clean my home...cook....shop...plan.  I just can't force myself to do it as the more I try to do then that fatigue and pain increases like crazy!  

Right now if I do very little and then sleep 5hrs at night (and nap 2 times during the day) I can function.  We are supposed to go to his work holiday party (and I would love to feel good and go) but I don't think that's going to happen.

Christmas decorating or cleaning or shopping or all that seems like I am going to do nothing at this point as I don't want to get worse.  In yrs past I have "forced" myself and I have paid the price for it big time.  

There's alot that's not "right" between H and I....I told him about my results (he never asks about my doctor visits or any of it) then I said how discouraged I am to have it active again...how tired...in pain and not moving forward on things I want to be doing in my life.  I sat there waiting for over 10mins for him to respond.....nothing...not a single word back....finally I said it's been 10mins and you haven't even responded to what I just said. I can't tell you how badly that hurts me....how unloved...uncared about I feel...I am simply blown away right now.

He finally said he doesn't know what to say....

So I have zero emotional support/connect....but that's not a new thing...it just hurts me and depresses me.  Had hard time sleeping heart was pounding...stressed...finally did sleep and I know I have to avoid encounters that stress me but life doesn't always work that way and I have emotional needs like any other human being.

Going to pull myself together today....let it go....like the song cause holding on to painful things is bad for me and I am the only person that suffers if I do. 

Sorry to dump but it felt good to release it somewhere....I have decided to look into hiring a clean service that would take stress off of me.  And basically anything I don't WANT to do or can't manage I have decided I won't be doing it.  That is a 1st time thing in my life to have committed to that....come Monday I will make my best "pitch" to the doctor as to why he should let me go on antiviral to try and see if it helps me.  Best I can do....and go from there.

Thank you for listening....one other thing....I have a hard time with telling people about the chronic fatigue dx....because the response is I am tried too.  Or I don't sleep well too....they think you are just lazy and there's ALWAYS something wrong with you and you like to complain.  I gave up telling anyone to be honest....nobody ask how I am doing....nobody in my life cares. 

I want to do things like work out...I have been trying for yrs....and everytime I do this EBV activates again slamming me down.  I want to have a part time job so I can interact in the world and not feel like I am isolated but I can't stand up for hours and then recover to go in the next day.  Plus I have Plantar Fasciitis in both feet (that's another problem seeing foot doctors and shots and all that) It all overwhelms me at times.  

Could I ask you did you start taking the antiviral one time per day or was it something you took several times per day then months later go down to 1 time per day? 

Geez my post is long and all over the place...sorry about that...I am having some brain fog issues today.

[Mindy D]

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@aprildreams wrote:

@sherylsiuI am an RN...and we are the worst at self treating.  May 2016, I had a "migraine headache" and off and on it hurt for 3 or 4 days....I took tylenol...on the 4th day my dil came by and took  a look at me and said we are going to the doctor.  Within 2 hours I was in  ICU with 3 blood clots in my brain.....caused by a sinus infection I had self treated.  I had a very rare blood clot called a CVST.  Google it.  I tell all my friends if they have any head pain, sinus pain, earaches....get to the dr.   Not worth the risk.

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CVST is rare. It only accounts for 1% of all strokes and only 8% of these cases results from infection. It most commonly occurs in young women, especially those using oral contraceptives. 

[suzyQ3]

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@tsavorite wrote:

@gidgetgh Ya stress is a big one for me too....I had a bad night...worse time to have words with spouse as it goes badly.  I keep sharing with him what's going on but he just doesn't have any interest.  We have things coming up....of course hoildays...family events to attend Thanksgiving at my home (just my son's) so very small but still I have no energy to clean my home...cook....shop...plan.  I just can't force myself to do it as the more I try to do then that fatigue and pain increases like crazy!  

Right now if I do very little and then sleep 5hrs at night (and nap 2 times during the day) I can function.  We are supposed to go to his work holiday party (and I would love to feel good and go) but I don't think that's going to happen.

Christmas decorating or cleaning or shopping or all that seems like I am going to do nothing at this point as I don't want to get worse.  In yrs past I have "forced" myself and I have paid the price for it big time.  

There's alot that's not "right" between H and I....I told him about my results (he never asks about my doctor visits or any of it) then I said how discouraged I am to have it active again...how tired...in pain and not moving forward on things I want to be doing in my life.  I sat there waiting for over 10mins for him to respond.....nothing...not a single word back....finally I said it's been 10mins and you haven't even responded to what I just said. I can't tell you how badly that hurts me....how unloved...uncared about I feel...I am simply blown away right now.

He finally said he doesn't know what to say....

So I have zero emotional support/connect....but that's not a new thing...it just hurts me and depresses me.  Had hard time sleeping heart was pounding...stressed...finally did sleep and I know I have to avoid encounters that stress me but life doesn't always work that way and I have emotional needs like any other human being.

Going to pull myself together today....let it go....like the song cause holding on to painful things is bad for me and I am the only person that suffers if I do. 

Sorry to dump but it felt good to release it somewhere....I have decided to look into hiring a clean service that would take stress off of me.  And basically anything I don't WANT to do or can't manage I have decided I won't be doing it.  That is a 1st time thing in my life to have committed to that....come Monday I will make my best "pitch" to the doctor as to why he should let me go on antiviral to try and see if it helps me.  Best I can do....and go from there.

Thank you for listening....one other thing....I have a hard time with telling people about the chronic fatigue dx....because the response is I am tried too.  Or I don't sleep well too....they think you are just lazy and there's ALWAYS something wrong with you and you like to complain.  I gave up telling anyone to be honest....nobody ask how I am doing....nobody in my life cares. 

I want to do things like work out...I have been trying for yrs....and everytime I do this EBV activates again slamming me down.  I want to have a part time job so I can interact in the world and not feel like I am isolated but I can't stand up for hours and then recover to go in the next day.  Plus I have Plantar Fasciitis in both feet (that's another problem seeing foot doctors and shots and all that) It all overwhelms me at times.  

Could I ask you did you start taking the antiviral one time per day or was it something you took several times per day then months later go down to 1 time per day? 

Geez my post is long and all over the place...sorry about that...I am having some brain fog issues today.

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@tsavorite, I am sorry about your situation. I hope like heck you can get some relief -- and more support.

[Mindy D]

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@gidgetgh wrote:

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@50Mickey wrote:

@gidgetgh . I think we might have the same thing. Mine started Monday afternoon with a slight sore throat and drainage from my nasal passages. I don't have a sore throat now but I can't shake the fever and chills and pounding headache. No appetite and no energy. It seems like a mild case of flu. I had the flu 2 years ago and it was much worse than this. I am off tomorrow to Urgent Care if I am still running a fever. I have a feeling that this is a viral infection and therefore antibiotics will not help. Don't understand why your Dr. didn't do a rapid strep test and a flu test. The last time that I had the flu on 2018 I had the flu shot but it was not a good year for the vaccine. 

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@50Mickey - he didn't think my fever was high enough to do the flu test. I still think I might have had a mild case. 

As for the strep test, I don't do well with the throat swabbing so they'd have to do bloodwork.  Which would have been fine with me but he decided to just go ahead with the antibiotics. 

I hope you get to feeling better soon. 

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Carrie Ann, next time, ask for the flu test. There are documented cases of influenza with no fever at all. Low body temperatures with influenza are also documented. There is no reason for the doctor to not test to rule out flu. With flu, there are usually body aches. Do you have body aches? Usually, there is coughing with flu. Are you coughing? 

Edited to add the list of symptoms from the CDC:

Symptoms

Influenza (flu) can cause mild to severe illness, and at times can lead to death. Flu is different from a cold. Flu usually comes on suddenly. People who have flu often feel some or all of these symptoms:

• fever* or feeling feverish/chills❤️
• cough
• sore throat
• runny or stuffy nose
• muscle or body aches
• headaches
• fatigue (tiredness)
• some people may have vomiting and diarrhea, though this is more common in children than adults.

*It’s important to note that not everyone with flu will have a fever.❤️

[gidgetgh]

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@tsavorite wrote:

@gidgetgh Ya stress is a big one for me too....I had a bad night...worse time to have words with spouse as it goes badly.  I keep sharing with him what's going on but he just doesn't have any interest.  We have things coming up....of course hoildays...family events to attend Thanksgiving at my home (just my son's) so very small but still I have no energy to clean my home...cook....shop...plan.  I just can't force myself to do it as the more I try to do then that fatigue and pain increases like crazy!  

Right now if I do very little and then sleep 5hrs at night (and nap 2 times during the day) I can function.  We are supposed to go to his work holiday party (and I would love to feel good and go) but I don't think that's going to happen.

Christmas decorating or cleaning or shopping or all that seems like I am going to do nothing at this point as I don't want to get worse.  In yrs past I have "forced" myself and I have paid the price for it big time.  

There's alot that's not "right" between H and I....I told him about my results (he never asks about my doctor visits or any of it) then I said how discouraged I am to have it active again...how tired...in pain and not moving forward on things I want to be doing in my life.  I sat there waiting for over 10mins for him to respond.....nothing...not a single word back....finally I said it's been 10mins and you haven't even responded to what I just said. I can't tell you how badly that hurts me....how unloved...uncared about I feel...I am simply blown away right now.

He finally said he doesn't know what to say....

So I have zero emotional support/connect....but that's not a new thing...it just hurts me and depresses me.  Had hard time sleeping heart was pounding...stressed...finally did sleep and I know I have to avoid encounters that stress me but life doesn't always work that way and I have emotional needs like any other human being.

Going to pull myself together today....let it go....like the song cause holding on to painful things is bad for me and I am the only person that suffers if I do. 

Sorry to dump but it felt good to release it somewhere....I have decided to look into hiring a clean service that would take stress off of me.  And basically anything I don't WANT to do or can't manage I have decided I won't be doing it.  That is a 1st time thing in my life to have committed to that....come Monday I will make my best "pitch" to the doctor as to why he should let me go on antiviral to try and see if it helps me.  Best I can do....and go from there.

Thank you for listening....one other thing....I have a hard time with telling people about the chronic fatigue dx....because the response is I am tried too.  Or I don't sleep well too....they think you are just lazy and there's ALWAYS something wrong with you and you like to complain.  I gave up telling anyone to be honest....nobody ask how I am doing....nobody in my life cares. 

I want to do things like work out...I have been trying for yrs....and everytime I do this EBV activates again slamming me down.  I want to have a part time job so I can interact in the world and not feel like I am isolated but I can't stand up for hours and then recover to go in the next day.  Plus I have Plantar Fasciitis in both feet (that's another problem seeing foot doctors and shots and all that) It all overwhelms me at times.  

Could I ask you did you start taking the antiviral one time per day or was it something you took several times per day then months later go down to 1 time per day? 

Geez my post is long and all over the place...sorry about that...I am having some brain fog issues today.

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@tsavorite - don't let it make you feel bad that people don't understand your illness. They're not living with it, you do.  Millions of people have physical issues I don't understand because I don't have them. But it's nice when people are empathetic if you mention that you have a chronic health condition. But some people just aren't wired with the compassion chip. 

On the antivirals, when I started it was on Zovirax, She started me at the maximum dose whichnInbelieve  is/was 500 mg three times a day. I would take them every 6 hours, like usually 8, 2 and 8. 

I take Famvir now and I'm on the highest dose allowed. 500 mg three times a day.  I haven't tried to lower the dose in quite awhile. I'd like to try, but I'm under a tremendous amount of stress and the last thing I need right now is a major EBV flare up. 

The goal is to start and then hope your immune system will kick in to suppress the virus and then you lower the dose. As I've mentioned before, my immune system has never shown an interest in doing that. So I've stayed on the maximum doe and try not to think about that. 

[Mindy D]

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@tsavorite wrote:

@gidgetgh Ya stress is a big one for me too....I had a bad night...worse time to have words with spouse as it goes badly.  I keep sharing with him what's going on but he just doesn't have any interest.  We have things coming up....of course hoildays...family events to attend Thanksgiving at my home (just my son's) so very small but still I have no energy to clean my home...cook....shop...plan.  I just can't force myself to do it as the more I try to do then that fatigue and pain increases like crazy!  

Right now if I do very little and then sleep 5hrs at night (and nap 2 times during the day) I can function.  We are supposed to go to his work holiday party (and I would love to feel good and go) but I don't think that's going to happen.

Christmas decorating or cleaning or shopping or all that seems like I am going to do nothing at this point as I don't want to get worse.  In yrs past I have "forced" myself and I have paid the price for it big time.  

There's alot that's not "right" between H and I....I told him about my results (he never asks about my doctor visits or any of it) then I said how discouraged I am to have it active again...how tired...in pain and not moving forward on things I want to be doing in my life.  I sat there waiting for over 10mins for him to respond.....nothing...not a single word back....finally I said it's been 10mins and you haven't even responded to what I just said. I can't tell you how badly that hurts me....how unloved...uncared about I feel...I am simply blown away right now.

He finally said he doesn't know what to say....

So I have zero emotional support/connect....but that's not a new thing...it just hurts me and depresses me.  Had hard time sleeping heart was pounding...stressed...finally did sleep and I know I have to avoid encounters that stress me but life doesn't always work that way and I have emotional needs like any other human being.

Going to pull myself together today....let it go....like the song cause holding on to painful things is bad for me and I am the only person that suffers if I do. 

Sorry to dump but it felt good to release it somewhere....I have decided to look into hiring a clean service that would take stress off of me.  And basically anything I don't WANT to do or can't manage I have decided I won't be doing it.  That is a 1st time thing in my life to have committed to that....come Monday I will make my best "pitch" to the doctor as to why he should let me go on antiviral to try and see if it helps me.  Best I can do....and go from there.

Thank you for listening....one other thing....I have a hard time with telling people about the chronic fatigue dx....because the response is I am tried too.  Or I don't sleep well too....they think you are just lazy and there's ALWAYS something wrong with you and you like to complain.  I gave up telling anyone to be honest....nobody ask how I am doing....nobody in my life cares. 

I want to do things like work out...I have been trying for yrs....and everytime I do this EBV activates again slamming me down.  I want to have a part time job so I can interact in the world and not feel like I am isolated but I can't stand up for hours and then recover to go in the next day.  Plus I have Plantar Fasciitis in both feet (that's another problem seeing foot doctors and shots and all that) It all overwhelms me at times.  

Could I ask you did you start taking the antiviral one time per day or was it something you took several times per day then months later go down to 1 time per day? 

Geez my post is long and all over the place...sorry about that...I am having some brain fog issues today.

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My heart is with you. I have many similar issues and I want you to know that I really understand. I’m very sympathetic and hope you will be able to get something to help you.