Its like doctors have no clue....

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. 

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.

 

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. 

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

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. 

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>. 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. 

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

 

Wishing you all good immune support and a smooth recovery

Kiki xx