Its like doctors have no clue....

Posted , 11 users are following.

They all seem to think that your throat and lymph nodes HAVE to be involved. That this can go on longer than just a few weeks. It is like they only know the text book mono symptoms and that is it. Went to the ER last night after falling asleep for two hours and waking up with sweats and a rapid heart rate. They ran blood tests and checked my heart. My calcium levels are his so that is something I need to discuss with my regular physician but the ER doctor made it sound like all of my symptoms must be something other than mono and was shocked when I told him I never presented with "normal" symptoms. He said my weight loss and loss of appetite aren't normal if my throat isn't involved. That 8 weeks is too long. So now I am freaking out and once again heading to my regular doctor today. Did anyone else have sleep where you could only sleep for a couple of hours and awoke sweating with a racing heart rate? This has been going for a week. 

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  • Posted

    Hey Wendi, not sure if we've talked before or not (there are a few Wendis) but I'm experiencing something similar to you. I'm also on week 8 (male in Canada).

    My mono test came back negative, but whatever has been attacking me the past couple months has almost identical symptoms! Really frustrating not knowing what's wrong, but all the tests I've had done have came back 100% fine. confused

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  • Posted

    Hi Wendi!

    My mono test came back positive in Nov last year but it was not alarming number. The only symptom I had at that time was one swollen node on my neck. I ran thru lots of tests and my doctor never admitted mono could be a reason for something. She only said each time that my body would deal with it. Yet its not been dealing with it much and its been 8 months since I got that test for the first time. Since then I think I have had almost all nodes swollen periodically depending how I feel. Even that was not a good a reason for my doctor to admit mono is nasty thing I am having hard times with.

    If you can insist on being sent to immune system specialist. They can run more tests and even more detailed tests regarding immune system which is primarily attacked by mono. Mine showed mono positive and still active and test was done 7 weeks ago. So yeah one part is theory how fast mono should go away and second part is reality and how each of us cope with it.

    I understand how you feel cause you are not feeling well and want to know why and only doctors can say. But on this forum I have seen so many people who have been struggling with mono for months so I know textbook symptoms might vary.

    So don't think about bad things, it really is possible mono is giving you hard times this way. I even had mono rash which textbook says about as a result of taking antibiotics but I never did take any recently.  My regular doctor said it could not be from mono but another said that it could be.

    I wish you lot of luck and I hope you feel better soon.

     

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  • Posted

    Hey Wendi.  Yes I have that problem on and off.  Actually it had stopped for a few months and last night it came back.  Racing heart, upset stomach and then anxiety.  It was bizarre.  And I'm 10 months in.  

    The doctors can be the worst.  My only advice would be to find a good naturopath.  I've been seeing two and they've helped a million times more than conventional doctors. 

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  • Posted

    How much weight have youbwill lost? Are you able to eat? Eating seems to upset my stomach. Causes racing heart rate.
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  • Posted

    Wendi, I think the symptoms play with our minds because it’s not “textbook” I went to my GP yesterday because after 3 weeks my rash and swelling can right back. He ordered another shot of steroid and another 7 days of steroids. I think the virus effects everyone a little differently. For you, it seems to be a lot in your digestion, heart racing. For me, it’s attacking my joints and skin. 

     

    I was freaking out and my dr knew it. He assured me since I’m older (45) that this thing will take some time to get over. 

    Not what anyone if is wants to hear, but he put my mind at ease some. 

    I agree if it carries on to find a specialist of some sort. That’s my plan of action.

    I feel for you. I know the mind games. At night it seems the worse. It’s lonely and frightening. I was up at 2:30 am itching, swollen, and rash all over my face. 

    We will get through this. Please reach out to me at night if you need encouragement anytime. 

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  • Posted

    Hey Wendi, so so sorry you wound up going to the ER. Doctors have NO idea how to handle these types of viruses and only go by what they learn in textbooks. Even though they say not to go by what you read online, these stories on this site of people getting better are absolutely true accounts.

    My symptoms were very similar to yours, it started for me back in September with very swollen lymph nodes and a very high fever. When those symptoms went away, I started dealing with scary ones like new swelling/itching lymph nodes, night sweats/waking up every few hours with either one leg/arm covered in sweat or my whole body, general insomnia, numbness, tingling and twitching all over, wandering bone/muscle pains that would always leave severe weakness (couldn't walk down stairs without my legs shaking, my scariest and worst symptom), spine pain, digestive problems, shortness of breath and horrible, crippling anxiety that I never use to have. I lost 15lbs (went from 130lbs to 115lbs) and looked like a ghost.

    I went to many doctors who kept passing me along to specialists, and went to the ER many times only to feel worse every time, especially after they'd tell me that all my blood tests and scans came back perfectly fine. The only 3 abnormal tests I ever had were extremely low ferritin (anemia), low vitamin D and a barely positive epstein barr/mono test (I got a 36 when the limit for positive was 35>wink. I felt for a long time that it could be a false positive, but then I read all the stories on here and noticed how similar my symptoms were.  I was also tested for Lyme because of all the neuro symptoms I had.

    I am doing a lot better now 9 months on, but I'm still not quite there (I still can't work and have to limit my activity), but one of the biggest things I've noticed about this illness is that it tricks you. It fools your brain into getting anxious and feeling panicky and depressed, and then other symptoms start to come on. It's almost like the virus wants you to feel anxious and can better attack the body when it's stressed. So trying your best to stay calm and knowing that it will all pass eventually will really help. I may have mentioned this before, but trying to find a place that can give IV fluids can go a LONG way, they really helped my body relax. I started "turning the corner" when I began maintaining my hydration, started eating a militantly healthy diet (80% veggies and fruits, 20% protein, lots of blueberries) and started meditating. There are a lot of free apps that can help teach you how to meditate and it really really helps. I'm also on a number of supplements like curcumin, ashwaghanda and a supplement called myocalm for sleep.

    I still feel a few symptoms and sometimes they worry me, but I try to focus on how much I've improved. I still have the muscle weakness/bone pains occasionally, still have interrupted sleep and see spots in my vision, and my lymph nodes still ache on occasion, but I am MILES from where I was months ago and I KNOW for a fact that you will get better too. If i've gotten this far, I know you will as well. It takes a long time for the immune system to get the upper hand in this illness, especially when it's constantly tricking your brain into feeling the panic. But just know that it will pass and you will heal. 

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    • Posted

      I find your story very encouraging and can relate to feeling like this virus is a genius trickster. Just when you think one symptom is gone it’s replaced by another. 
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    • Posted

      Hi LMM,

      So much of what you have written resonates with me. These are not textbook cases yet there seem to be so many of them. I had the classic tonsil infection initially but now am crippled with anxiety, insomnia, weight loss (was 114lbs now 104), dizziness, non-stop headache and various neuropathies. 

      I am with with you on the kick-ass diet. Can you imagine what we could feel like when we are recovered? We must sleep, relax and heal.

      Harness that life force back and be well all x

      Kiki

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    • Posted

      This is all so true. I was diagnosed end of Feb, but I'm pretty sure it started at the beginning of Feb so I think I'm starting into my fifth month. The anxiety and depression, along with debilitating fatigue, muscle weakness, shortness of breath has been the worst for me. My Dr told me that mono creates anxiety and also thrives on it so it's a horrible cycle. I've also started eating as clean as possible hoping that helps. I keep hearing a lot of people say it calms down in the 5th month. I know it's different for everyone but praying it's true for me too. 

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    • Posted

      The ER doctor gave me Ativan. OMG.....I slept 10 hours last night. I feel like a new person. I even ate today. The digestive issues aren't so bad. Not great yet but baby steps. smile

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    • Posted

      Thinking about you Jani and Lil MIzz Movie, hoping things can be more settled for you guys moving forward - hang in there words can describe the pain of this I know. Sorry my messages are short struggling a bit myself with back pain today.

      Craig

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    • Posted

      I'm so glad!! Yes, any improvement is a step in the right direction! I'm so glad you started taking something for sleep because some of your symptoms sounded exactly like mine regarding not being able to sleep, racing heart, sweats, not eating... and as soon as I started on meds that all went away. Although I saw the Dr this morning for this cough(sinuses/allergies) I've developed and she wants me to start on meds for depression now because she thinks that's really holding back my progression with the mono..she said it's all a vicious cycle. 

      Yay for eating toosmile Hang in there Wendi, we got this. Dr assured me again today, we will get through it, many many people get it. Just have to accept and ride it out👍🏼 

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  • Posted

    HI Wendi,

    I am in Toronto, Canada and was diagnosed with an active EBV infection in early March but I was symptomatic since mid-January. I have had a full constellation of awful symptoms since then....initially, tonsillar infection, dry, burning mouth, dry eyes (these seem to be resolving somewhat).....now  fatigue but inability to sleep for more than 4 hours even with a sleeping aid, anxiety (not usual for me), multiple neuropathies, persistent headache, weight loss (10% of my regular weight (114lbs down to 104lbs). I keep on eating but it goes nowhere!....I am seeing the infectious disease doc and neurologist tomorrow....I am hoping these symptoms just run their course and not signs of something more sinister.....there seems to be a regular pattern of doctors saying it's "just EBV....you have a competent immune system that should be able to deal with it".....surprise surprise, my poor immunue system is having  a very tough time, even with all the loving support I am giving it sad

     

    Wishing you all good immune support and a smooth recovery

    Kiki xx

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    • Posted

      Hang in there too Kiki, this phase you are going through right now the first 3 months really is by far the worst in my experience. If it still takes a bit of time for full recovery, don't panic that is normal, but the key thing to remember is you WILL get over this and make a full recovery, it's so hard not to think that when going through it but definitely you will get there - take it from me as someone who went through it for months and thought they never would, but God brought healing.

      Taking vitamin and herbs helped me, a good strong multi-vitamin per day, high doses of vitamin C (1000mg-3000mg per day), immune boosting herbs like siberian ginseng, echinicea and oregano and B complex for energy levels.

      Hang in there and you will get there with time!

      Craig

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    • Posted

      Thank you Craig for your words of encouragement and support. I know you have a long road to recovery but you made it!..... I am a 48yr old woman, and just hope my immune system is up for this challenge. 

      Kiki

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    • Posted

      Thanks Kiki, I do believe you will make it through just hang in there. I know what suffering is like even in the present day as having lengthy problems with my back and pain and associated stress and anxiety and fear and depression.

      Just praying God can lift us all through our troubles at this time, thinking of you and remember you are going to get better, 100% I believe that for you.

      Craig

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    • Posted

      Thank you Wendi, Meredith and Craig. Our bodies do have the healing power. Let's do our best to provide the ground for them to fight the good fight!.....Yes, we got this!

      Kiki xx

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    • Posted

      I agree Kikisan, as tough as this is, I look for something everyday to make me laugh and I mean laugh hard. Our bodies respond to emotions. Let’s try to feed our minds and bodies with uplifting energy and beat this thing. 

      I was getting caught up in a cycle of fear that I can’t get well.  Stress hormones feed off of fear. Our bodies need our good thoughts. 

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    • Posted

      I second that Tabitha! I managed to get out and have dinner with old friends tonight. We did laugh and it felt good. I know there is much healing power from the connections we have nurtured......

      I know that cycle of fear well and am working very hard to channel that precious energy elsewhere. Thank you for the wise reminder. 

      Happy weekend x

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