Chronic Fatigue Epstein Barr and what is Hashimoto's is my life over ?

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I thought I was just having severe menopause symptoms however I now  realize it’s Epstein Barr . I’ve been terribly  fatigued and depressed for  6 months . I’m now panicking ... I’m on a regimen of virus supplements taking 20 pills a day . 

I know I have Epstein Barr from a blood result years ago ... I need to have more blood work however wondered what Hashimotos is as I don’t have swollen lymph nodes or a rash . I’m so scared and sad😢 is my life over ? 

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  • Posted

    I'm sorry you're feeling so poorly.  How long has it been since you've been to an endocrinologist?  You really need to have current blood work done, both for the Epstein Barr and for the Hashimoto's. Hashimoto's  thyroiditis is an autoimmune disease.  It's caused by the body's immune system attacking the thyroid tissue. You won't get swollen lymph nodes or a rash, usually.  I know because I've had it for years.  

    If the virus supplements you're taking are over the counter, you need to get yourself to a doctor. You need a proper current diagnosis and treatment Please take care of yourself.  xx    

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    • Posted

      Thank you Lynda ... I had a breakdown today so at my wits end ! Never been to a endocrinologist? Just my regular dr ? 

      I will be sure to find one now though ! I just thought Epstein barr as I had that come up years ago . Fatigued to no end and the depression .... I hope it is just menopause but know it’s probably not .

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    • Posted

      I'm so sorry you're feeling so low.  But, that's part of the disease as well.  I was exhausted all the time, I could sleep 12 hours at a stretch and get up feeling as if I'd had no rest at all.  My skin was dry and I began to lose my hair. Had bad brain fog, too.

      Long ago, women who had this condition sometimes went mad and were placed in asylums to die an early death.

      GP's are just "dancing in the dark." You need to see a specialist, my dear! xx

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  • Posted

    Hashimotos aka chronic lymphocytic  thyroiditis or Hashimostos thyroiditis is an autoimmune condition where the body attacks its own thyroid gland and usually over time destroys it. My daughter was diagnosed with hypothyroidism in June, so I have been trying to learn as much about it as possible. It's all pretty complicated, so I won't even begin to approach it like I have more than a primary understanding of it. My daughter doesn't have Hashimoto's, but it is closely linked to hypothyroidism as most people with primary hypothyroidism also have Hashimotos. I'm sure some of the ladies in this forum that actually have hashimotos will be along and give you more solid information. From what I do understand, it is an autoimmune condition where the body produces antibodies against your own thyroid. You wouldn't have swollen lymph nodes from it, rather a swollen thyroid gland ( goiter) but that's not always the case. You would get it tested with bloods. They would need to test your antibodies along with your other thyroid hormones. They need to test TSH, FT4, FT3,TPOab and TGab. Most conventional dr's will not test the FT3 or the antibodies. You will need to specifically ask for them and even then, may need to get these done privately. Also, when you get your results, make sure you get your actual results with the ranges. Most dr's will tell you your thyroid is "fine" when it is at the very bottom of the range. You want optimal ranges - not " ok" ranges. Your life will not be over if you have Hasimotos and/or hypothyroidism. You'll be given T4 to help resolve the issue and balance your thyroid if you're hypothyroid. There is no cure or meds to control Hasimotos and therefore most conventional dr's ignore it. From what I understand, a strictly gluten free diet can help with Hasimotos symptoms( flares) and possibly slow down its progression of destroying the thyroid. Try not to worry too much about it. Getting a messed up thyroid straightened out is not a fast or easy thing but once it is sorted out you should feel much better. Take care and chin up! 

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    • Posted

      Thank you everybody ! I just asked my doctor to call in the tests Audra. I broke down yesterday with crying hysteria . I guess I thought I was handling this in my own little world ... but it’s be a lonely road doing it all alone .  I guess after 6 months of fatigue and trying to manage it I just crashed . 

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    • Posted

      I'm glad you ordered the test! That's the right first step to take. I'm so sorry you are going through such a rough time! Thyroid issues can make you feel dreadful! I know my daughter was in rough shape when she finally got her diagnosis and started treatment. Thyroid issues are usually like a slow bleed.. you start slowly feeling worse and worse until you realize you just aren't functioning like you should! My daughter was a high level athlete a couple years ago. She had energy just like most teenagers do, loved playing her sport and working out and just feeling great in general! Now she is hardly able to workout at all and it is usually just walking or trotting on a treadmill for 15-20 mins. she is tired all the time, is sleepy and constipated, irregular periods, among other issues and is just so sad to see my young girl in such a sad condition. It breaks my heart for her and I get frustrated that her hypothyroidism can't be fixed quickly and that she can return to her normal, happy, energetic self. I have faith that she will get settled and will be able to feel good again. I hope that for you too. Let us know when you get your test results back. Also, if any of your supplements that you're taking contain Biotin ( B7)  you might want to stop taking them 24-48 hrs before your thyroid labs as it has been shown to cause distorted thyroid bloods and give false lab readings. I'd look at all the supplements ( you mentioned taking 20 ) and see if any of them interfere with thyroid blood labs. I know they seem innocent enough but some might throw off or mask your actual thyroid hormones and it's important to diagnosis and treatment to get as accurate measure as you can. 

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  • Posted

    Hi Lori, yes it is perimeno, it’s the reason the EBV reactivated and EBV is the culprit in hashimotos. If you definitely have hashimotos then you will most likely need thyroid supplement like synthroid. I’ve been on it since teen years due to hashimotos. It’s not the end for sure, just a nuisance and once you treat the hypothyroidism you will probably start having more energy. As far as EBV the only thing you can do is anything to boost your immune system. And eventually it will go dormant again. It’s been over two years for me, still not gone but so much better than it was. Also, just knowing that you do have EBV reactivation will jumpstart your brain into getting in contact with your immune system and get it going in the right direction. When I finally got a diagnosis i then started recovering. 
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    • Posted

      My dr just told me that EBV is bogus ? Shook her head didn’t believe anything I was telling her .. that I’ve been in bed for almost 5 months ! I’m saying ‘I’m not imagining this’ I’m exhausted all the time ! She then said your thyroid is good but didn’t do a full panel .
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    • Posted

      Well, your doctor is an idiot!  But I think you may have suspected that.  Get yourself to an endocrinologist and don't waste any more of your time.  Best of luck to you. xxx

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    • Posted

      Well we know how many doctors also deny perimeno symptoms exist, so does it shock you about EBV? It’s a viscous virus that causes havoc in your body if it reactivates. I also believe there are different strains. When I had mono I was extremely sick, hospitalized for a week. Some teens only get a mild sore throat. So it makes sense that I got so ill when it reared it’s ugly head again. 

      You know how ill you’ve been, and it’s not in your head. Go see an endo who can do the proper thyroid testing. And just keep hanging in there. It takes time.

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    • Posted

      Hi sassy 

      Thank you for asking .... I’ve been AWFUL this past week sooooo fatigued . was in bed by 6pm last night . Bouts of hysterical crying ... just not doing well .  Hopefully with all the pills I’m on to get rid of the virus it’s leaving my system and that’s why I feel worse . 

      It’s been 6 months and now after trying to handle it and be strong .... I’m breaking .

      Even my 82 year old mom is planning to come from England as so worried about me .,

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    • Posted

      Hi Lori

      I thought you may be struggling today, I'm so sorry you feel so bad. I know this process feels absolutely endless, but I think finding the right hrt or treatment has to be key. Not sure you've found that relief yet, but it's out there - you just need someone to change something. I think crying is good for you, the frustration and worry has to go somewhere doesn't it, and you've been strong for so long. This will just be a blip now Lori, you'll dust yourself off, keep going until you find what you need. In the meantime just go with it, get rid of any expectations and focus on any little thing that makes you feel better. Everyone needs their mum for a hug, that'll help! Could you come to England for a change of scenery? Big hugs to you love xx

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    • Posted

      Oh sassy I’d love to come to UK but I’m bedridden ... I’m so ill . I think if it was ‘just hormones’ I could handle it and I’m back on the patch now which did help me the past few months . 

      You’re so sweet and yes it’s lonely doing this all alone but have to think that having somebody here is expending more energy even just talking wipes me out . 

      I manage just a few tasks around the house  ... the minimum and then it’s back lying down . But I definitely have CFS and only for you bringing the subject of EBV and CFS I would never have figured it out 🙏🏻

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    • Posted

      Hiya Lori

      I know what you mean, and have everything crossed for you to feel better. Stick with the patch regardless, so at least you've got the hormones in your system and who knows.... Next week you may feel better than this week. What did the naturalpath give you to take? I'm not familiar with this at all, but just wondering if everything combined is make you feel worse at the moment. Xx P. S you're not missing anything in the UK, the weather will be awful and we are just as hormonal on this side of the globe smile ? xx

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    • Posted

      Yes sassy cannot hurt can it ... and yes I’m on a load of pills for antiviral all natural but from a good brand so .... fingers crossed . My mum coming from Manchester October and yes the weather here September October is lovely and warm . I’ve warned here though that I can only do the minimum and mostly in bed but that’s why she’s coming so .... she can cheer me up a bit . Some Manchester humor may do the trick . 
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    • Posted

      That'll do the trick Lori. I'll be seeing my mum tomorrow, and trust me, I don't care if I'm 43 and she's 75...ill be on her lap! smile Something for you to look forward to. In the meantime watch TV, eat chocolate and be good to yourself xx

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    • Posted

      I’m running out of things to watch 🤣 seen  everything 5 times  ! But just gotta breathe suck it up and picture myself better. How I’ve got through this I’ll never know ....I’m sure there is a big life lesson in there somewhere .

      My mom says I’m not dying although have felt like I am . Our lovely mums so wise so comforting ....hate be such a burden as she’s old but she’s there for me and so youthful with more marbles than me right now ! 

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    • Posted

      Here my list for comfort TV Lori (afraid there isn't anything of depth)

      Real housewives... Of anywhere

      Gilmore girls

      Dance moms

      Marriage boot camp

      Goodnight mister Tom

      The apprentice

      Comfort food (if I wasn't on a diet!)

      Potatoes

      Pancakes

      Chocolate

      Pies

      Potatoes (love them)

      I also love an audio book Lori, I'm finding that quite helpful during the day, just to distract myself from the worry. Also, those therapeutic colouring books are good to relax your mind.

      When it's a bad day Lori, it does feel like we're dying but it's true, this won't kill us. You're super strong, it'll come good again you'll see xx

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    • Posted

      Good ones sassy! Watch all the real housewives too! 

      Any baking show

      Ozzy and jacks world detour ( for a laugh) ozzy Osborne is hilarious 

      Bloody Kardashian’s !

      Anything on bravo or E 

      Going to try to watch a movie tonight . Trying NOT to workout and seeing if it helps me get better . I’ve worked out hard during this fatigue and always felt better afterwards but it may be doing more harm than good . So going for a boring short walk 🙄

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    • Posted

      Boring short walk sounds good Lori. I'm trying to get the balance with exercise too, since I've been running I don't feel as good as I did. Think my bhrt may be a low dose, so hoping to get that checked. Glad you are doing what you can, and you have a solid list of all my favourite shows to keep you company! Xx

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    • Posted

      You should feel great . My problem is over working out ... I love it ! I wonder why it’s not giving you a high ? 

      What doseage are you on ? I’m on 5mg of estradiol low dose testosteroneand leavong our the progesterone for now as can make you down 

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    • Posted

      Hi Lori

      I'm on 1mg estrogen, 200mg pregesterone and 5mg testosterone. Who knows if the dose is right! Hopefully having bloods next week and I can check back with the specialist xx

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    • Posted

      Hey Lori... jumping in here to just say I love most of the shows you like too! Kardashians, Houswives, Food Network. We've got Apple TV and I'm able to watch old season of holiday baking championships and kid baking shows... I just love them! World Of Dance has been on and I loved it! It just ended, so I've got a gap to fill on Wednesday nights! I've watched all the Harry Potters and Jurassic Parks so many times, I can recite  the lines with each character! 😜 Have you seen the new Murder on the Orient Express movie? It's really good! One thing I did when I was feeling so dreadful was make a playlist of some of my favorite songs from my teen years. I'd put in my headphones and just lay flat on the floor and close my eyes and just listen to the music and not think about anything else! Some of my favs were Duran Duran, INXS, The Cure.... I'd even picture myself dancing to the songs in my mind, feeling good and pain free and even go back to being 15,16 yrs old in my mind sometimes. It helped me feel better while I was listening to the music and even carried over a little energy afterwards. I also made a calming playlist. Put only music that I find soothing on it and would go curl up on the outside couch and close my eyes and try and just relax and clear my mind... maybe open my eyes and focus on things right in front of me... like the clouds and the leaves on my plants. Id actually get tingly and feel the energy ( anxiety)  leaving from my fingertips. Just maybe some things to try while you're trying to survive these tough days. 

      Im so happy to hear your mom is coming to visit soon! That will be awesome and I know she will be more than happy to hold and hug and take care of you while she is here! Moms are the best!!

      hang in there!

       

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