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Respected Contributor
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Registered: ‎03-09-2010

Re: oh my gosh, I am SO sick

[ Edited ]

@gidgetgh wrote:

@tsavorite wrote:

@gidgetgh  Could I ask you some questions about active EBV?  In 2017 is when I didn't know mine had re-activated...my throat hurt so bad (only other time in my life it hurt like that and swelled up so much that I couldn't speak it was that painful was back long ago age 15) then it was dx as mono....very sick with spleen involvement and out of school long time and so on.

 

I thought it can re-active again at anytime like it did in 2017...but I thought it was supposed to go into a "dormant" state and not be giving you symptoms.

 

I haven't had it checked again until today...thinking it was back possibly and make me sick again.

 

So are you checked yearly for it as active? do you have constant symptoms?  have you ever been given any treatment (anti-virals) and how do you manage it?  

 

I think this stuff is causing what one doctor told me I have "chronic fatigue" ....and I have never been given a anti-viral.

 

I know on my labs it shows certain antibodies elevated (2017) that show it is a virus I had before and it is in full blown activation (levels above 600) ....took me a yr to start to feel better.

 

This stuff has been a nightmare for me....sorry I got carried away...anything you care to share is much appreciated.



@tsavorite - I became suddenly very ill  in late 1993. 21 different doctors, test after test, swallowing studies. 3 ER visits over 2 1/2 years. I was finally diagnosed with Hasimotos Thyroiditis and put on Synthroid. That helped some, but my health did not return to normal.

 

After 2 years and a change in insurance, I finally was able to go back to my trusted Internist.  I was the one who actually suggested EBV to him. He did the blood test and my titers were "quite high". He referred me to an Infectious Disease Doctor. That doctor was vice chief of staff at a major Atlanta hospital. I went to her and she prescribed antivirals. I felt immediate relief. First I took Zovirax which worked for awhile, but not too long. Then she put me on Valtrex. I was on it for a year or so. Then she changed me to Famvir, which I still take to this day. I take a high dose of Famvir. Efforts to reduce my dose over the years have been unsuccessful. 

At the time, the doctor told me that the drug would help suppress the virus in the hopes that my immune system would kick into gear and work to suppress the virus and make it go dormant.  Unfortunately, my immune system doesn't have any interest in that. 


My initial symptoms were overwhelming fatigue, dizziness, zero appetite with very little weight loss,  trouble swallowing (that was horrible), a feeling that my throat was huge.  I would constantly pull on necklines of shirts and sweaters and even a necklace I wear every day. To this day, I still can't tolerate anything close to my neck.  I have trouble with my words sometimes. Like if I'm talking about a holiday, I'll get all the way through my story and call out the wrong holiday.  I realize it and correct myself immediately. Drives me nuts. When my EBV is in an active flare up, the speech thing is the first thing I notice. 

Apparently there can be a relationship between thyroid issues and the EBV. I didn't learn that till the last year or so. 

I imagine that I'll be on Famvir for the rest of my life.  I have to try to watch my stress as the EBV loves stress. 

 


@gidgetghThank you for sharing your story....wow!  I have always been told that anti-virals won't help and just "suffer" it out.  I have never seen a infectious disease doctor....never knew I should...thank you for sharing that I plan on looking into this.  Like you I have Hashimoto's and have been on several different thyroid medications the last 13+yrs.  I have been hoping I will feel better with normal energy levels for as long as I can remember but it never comes true.  Like a dream you hope will happen but it's always just out of reach.  

 

In 2017 when I was so ill my internist never re-checked to see if the virus ever went dormant state.  My titers being so high I think he should have ran them several months later to see what my body has been doing.  All that time I have been telling anyone who will listen I am falling down tired...I have been seeing other doctor for hormones thinking this could play a role too.  

 

This new internist (I only saw him 1 time prior to begin managing my care) was nice and listened...he also ordered a ultrasound of my thyroid since I never had one before.  He did say depending on all the test results I may need to see a ENT (I already have one for my chronic vertigo) but I truly think there is nothing a ENT can do...my gut tells me it's either thyroid or EBV or both going on.  I'll know in a few days.  

 

It seems that many here with chronic EBV also have Hash's....based on where this virus likes to attack (glands in the throat) that makes sense to me.  

 

Now I will begin looking for a infectious disease doctor....I doubt this new internist will prescribe anti-virals like my old one (never did) but who knows...we shall see.

 

Thank you again for taking the time to respond when you are feeling so bad yourself.  

Respected Contributor
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Registered: ‎03-09-2010

Re: oh my gosh, I am SO sick

[ Edited ]

@Ketra wrote:

@gidgetgh I hope the meds work and you start feeling better soon. I have constant active EBV and Thyroid autoimmune disease so I know what you are going through. It’s not fun!

I take thyroid meds, but I have found a significant improvement when I take 20 UMF Kiva Manuka honey when I first start feeling sick and contine to take 2 heaping tablespoons a day (1 morning, 1 night) until I’m better. The stuff works miracles! It’s even recognized by the National Institute of Health (NIH). When you feel better you can read:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6613335/

 


Thank you for posting about this!

 

I see it listed on Amazon...is that a good place to purchase this??

Esteemed Contributor
Posts: 6,407
Registered: ‎07-07-2010

Re: oh my gosh, I am SO sick

@gidgetgh  I hope you are feeling better.  I just came from the doctor and was diagnosed with bronchitis and conjunctivitis.  How miserable can anyone get?

The next time that I hear salt and ice together, it better be in a margarita!
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Re: oh my gosh, I am SO sick


@SXMGirl wrote:

@gidgetgh  I hope you are feeling better.  I just came from the doctor and was diagnosed with bronchitis and conjunctivitis.  How miserable can anyone get?



@SXMGirl - feel better. 


Why is it, when I have a 50/50 guess at something, I'm always 100% wrong?
Respected Contributor
Posts: 3,970
Registered: ‎03-16-2010

Re: oh my gosh, I am SO sick


@occasionalrain wrote:

All those urgent care places over prescribe. Most leave with a script for antibiotics; the reason we now have resistant bacteria. How can one have an upper respiratory infection without lung congestion? 


___________________________________________________

 

@occasionalrain, as a nurse of many years, I will be glad to answer your question.  It is really more common to have an upper respiratory infection without any involvement of the lungs or have any lung congestion.

 

An upper respiratory infection is defined as an infection which involves either the nasal passages, the pharynx, or the larynx.  It can be caused by a multitude of different microbes.  Generally, the most common cause of an upper respiratory infection is some type of rhinovirus.  There are more than a hundred different strains of rhinoviruses that are causative agents of upper respiration infections (URI).    But, it is most common for the URI  to only involve airway passages of the upper airways as stated above with no congestion or involvement of any type in the lungs.

 

Anything involving the bronchi or the lungs is generally termed lower respiratory infection.

 

So they are 2 totally different things.  There are a few cases that due to decreased immune status combined with a real nasty microbe that a URI may progress to a LRI.  This can certainly happen with particular strains of influenza viruses.  But in most cases, there are literally tens of thousands of URIs that occur every day globally that don't ever progress to any type of lower respiratory infection or involve any type of lung congestion.

 

And as another side note, after reading the thread & hearing about @gidgetgh's situation, I would say the doc practiced treatment that exhibits "upstream thinking".  She has some type of a URI that is persistent, also has a history of EBV, along with a thyroid condition.  That combined with the stress of being a caregiver for her husband places her at a documented increased risk of developing a secondary bacterial infection.  So she would certainly fall within a category for docs to consider dispensing antibiotics.  You are correct, that over prescribing antibiotics is the number one reason of multi-drug resistant bacteria.

 

However, in this case it demonstrates someone that doesn't fall into the "typical" box due to her medical history and caregiver role.   There is also the risk of her cortisol levels going sky high due to being sick on top of her caregiving responsibilities.  Elevated cortisol levels really play havoc with one's immune system & place individuals are increased risk of advanced disease/illness.  

 

 


* Freedom has a taste the protected will never know *
Respected Contributor
Posts: 3,970
Registered: ‎03-16-2010

Re: oh my gosh, I am SO sick

@gidgetgh, glad you went to the doctor today & hope you get to feeling better.  It is miserable to be really sick and then not being able to sleep just makes it that much worse.  I hope you are able to get a much better night's rest tonight!


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Re: oh my gosh, I am SO sick

@pitdakota  Thank you for the explanation. I now know something I didn't know before.

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Re: oh my gosh, I am SO sick

You are more than welcome @occasionalrain.  Sometimes, the "teacher" in me just comes out!  LOL!  


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Registered: ‎03-13-2010

Re: oh my gosh, I am SO sick

@gidgetgh,

Glad you are on the road to recovery.  And that you get some sleep tonight!

 

 

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Re: oh my gosh, I am SO sick

I got some sleep last night!  Yeah!

 

I woke up at 4:00 and gave up trying to get back to sleep at 5 and got up.

 

My throat isn't as sore today, thankfully.  But I'm just really worn out and pretty weak, like my body has been under siege, which it has!  I had a little bit of a coughing spell a few minutes ago, but that stopped fairly quickly.

 

Not as young as I used to be.  Takes awhile to bounce back.  I had two doses of the antibiotic yesterday and while it's been years since I've taken any antibiotics, this one usually starts working very quickly on me.

 

I appreciate the well wishes and @pitdakota  thanks for the detailed explanation.

 

 

 

 


Why is it, when I have a 50/50 guess at something, I'm always 100% wrong?