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Mono 7+ months, still can't leave house.

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(Not so) quick recap of the past 8 months: I am 28, female.

November: Suddenly began having a nervous stomach, loss of appetite, consulted doctor who gave me Paxil for anxiety, but ended up vomiting for 3 days after taking 1 pill, rx was canceled.

December: Started having panic attacks at work, began having issues with coordination and driving long distances, like sea sickness. Quit my second job as I thought it was just stress.

January: Panic attacks subsided after leaving my second job, but inner balance, loss of appetite and nervous stomach worsened. At this point I was still able to function normally, eat in restaurants, work long hours, it was just uncomfortable. Canceled my yearly vacation to Hawaii one week before we were schedule to fly, stomach felt too weak for a plane ride. We had non-refundable tickets/hotel reservations, so I was very seriously feeling unwell.

Mid February: Had Valentine's dinner with husband, but one glass of champagne made me severely ill immediately, and had to leave the restaurant mid meal (normally I could knock back half a bottle when celebrating and not even get a hangover). Went to the doctor the next day and was diagnosed with stomach flu. Took 2 weeks off work.

Beginning of March: Still felt sick and my skin became yellow/jaundice, rapid heart rate, developed swollen lymph nodes on neck, was diagnosed with lymphadenopathy, the day after that diagnosis I developed swollen tonsils and was tested for mono. Monospot came back positive immediately, and my liver test came back positive for mild hepatitis. My work put me on medical leave as I was considered a hazard to the open office environment with tightly packed cubicles. Only symptoms at this time were swollen tonsils lymph nodes, lethargy, sensitive stomach, nausea, insomnia, daytime sleepiness, dizziness, light sensitivity. No fever, no coughing.

April: I began feeling a little bit better, tonsils returned to normal, liver function returned to normal, but I still had insomnia, stomach sensitivity, light sensitivity, rapid heart rate (105 resting), and weakness. I returned to work.

May: All of my symptoms began to worsen, and I began working from home. Possibly relapsed from returning to work too soon. Although I had returned to work, I still was unable to eat anything except boiled chicken and rice.

June: Despite still resting at home, my symptoms still worsened. Light sensitivity, sound sensitivity, smell sensitivity, headaches, GERD, silent reflux, IBS, dizziness, muscle weakness, sleepiness, depression, rapid heart rate. I decided at this time to leave my job entirely. I couldn't go to the grocery store without sunglasses, earplugs, and only when it was either very late or very early with few people as too much visual stimulation would trigger nausea and my heart would pound so fast I felt faint.

July: Same, began having strange hot flashes and pressure behind my eyes. Really strong periods of skin flushing from the neck up which was painful. Spent most days with ice packs. Still no appetite. At this point I had gone from 132lbs (5'4") to 110lbs.

August: Returned to doctor who diagnosed it as chronic mononucleosis, and said I was still sick and that the virus may have migrated up into my ears/brain causing inflammation, but also that I could be developing agoraphobia due to not wanting to go outside while feeling ill, and also rxed me omeprazole for severe acid reflux. Began seeing a therapist. Therapist put me on Klonopin. First dose of only .0125 strength nearly put me in the hospital. Klonopin was replaced with Xanax .125 mg strength as needed, took it for two weeks before I felt less anxious.

September: Feeling better, less sick days, more better days. I feel like I'm recovering. Appetite is slightly returning, am now able to eat enough that I no longer have to survive on ensure and chicken soup. After 6 months of laying down constantly, the damage to my throat from the acid reflux has caused damage to my esophagus. Sticking to an alkaline diet and omeprazole. Headaches subsiding, still anxious. I feel like I will have about 3~5 sick days followed by 3~5 healthy days, but still not healthy enough for restaurants, driving more than a mile or two, or standing/walking for more than 30 minutes. Had my eyes tested by an opthamologist, as I have developed blurred vision in my right eye, lower eyelid twitch (constant, every single day), and anisocoria (my right eye dialates much larger than the left), all tests were normal, said it could be neurological.

Now in October I still feel about the same as September, my sick days are less intense, but I feel like my acid reflux is getting worse, although my appetite is stronger, I have really bad smell sensitivity. Onions, eggs, foul smells/strong smells will instantly turn me green. Also have severe post nasal drip.

Has anyone else had issues with acid reflux and post nasal drip as an effect of mono? I wonder if my symptoms are typical or if my immune system is trying to cover all of it's bases by attacking every single cell in my body. I feel like I've been run through the mill.

Any advice for dealing with chronic mono would be great.
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replied November 16th, 2011
Are you sure I didn't post this? This is me. Yes, I have had every symptom you talked about and even acid reflux and post nasal drip since I came down with mono 5 months ago. I mean the blurry vision and everything. I wish I had advice for dealing with it, but I am still looking for advice myself. Good luck (to us both).
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replied November 17th, 2011
Experienced User
Hey guys, just thought I'd stop by here, cause after reading both your threads it reminded me of my problems with mono as well.
It's definitely the worse type of mono, with all the "weird" symptoms, and how it seems to go on forever and and ever..
Boy it sure does feel like it..
But there's a light at the end of the tunnel, so be patient and avoid forming any hypochondriac tendencies like I had been doing, hard not to when your unwell for so long..
PLUS, how this kinda of mono gives you weird anxiety that seems to be triggered by NOTHING...It can drive you nuts, I know..Let me know if you need any advice, I'll tell you anything I can to help:)
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replied November 17th, 2011
Experienced User
ps
acid reflux, i know right? what the heck does that have to do with mono? but I had it too..So weird.
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replied November 17th, 2011
Experienced User
@ Peaches

"nervous stomach"
That was the only way I could describe it as well..Unlike anything I ever felt, kinda of like going down a steep hill in a car, and you get that "drop" in your stomach..I'd get that feeling constantly..It was a living H*&%
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replied November 23rd, 2011
@987zyx Oh man, I am sorry you are going through this too, but it is comforting that we're not alone, or at least it makes me feel a little bit more sane about it all. I posted this about a month ago, and the acid reflux has slowly gotten better, I've been able to stop taking the omeprazole, but I still have to make sure to sit up for an hour after I eat, and to stick to a diet that doesn't cause acid reflux, (although I must admit I still eat cheese). So my only advice is that it does get better with time.

@Sporque Thanks, it helps when others have had a similar experience and they recovered. Out of curiosity do you remember about how long it took you to be able to go outside again without being too overwhelmed? It's been about a month since I made my post, and I feel like my symptoms are beginning to resolve, but I get really overwhelmed when I step outside or when someone comes over to visit. I am in this weird inbetween phase where I feel too antsy to sit around at home, but going outside I feel weak and dizzy. I do get anxiety over dumb things randomly, like I can't even watch csi type tv shows.

On an update note, for the month of November my symptoms are:
Gas
Strange appetite, I get really bad hunger pains sometimes, but other times I can't feel hungry. I try to eat regardless.
Tension headaches.
Fullness in ears like I'm in a airplane
Sore jaw
Anxiety, and I feel weak/dizzy when dealing with people or going outside.
Insomnia despite laying down
Post nasal drip, but not as bad as before.
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replied November 24th, 2011
Experienced User
It's hard to say how long, It was 8 months before I was somewhat normal. Generally things seem to get better over months, not weeks..So look at how you've improved month to month..Not day by day, or week by week. You don't want to get your hopes up..Also, you eventually have period where you feel 100% recovered..that's great, but as soon as you over do it, it can "flare up" so proceed slowly.
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replied December 22nd, 2011
December update, so now going on 10 months.

Still stuck at home, but much more energetic. I feel well enough to do some home exercise, like zumba and yoga. I still have a lot of pain in my neck, throat, jaw, ear, and around my temple on the right side. I did a bit of research and found that all of my problem areas are pinpointing exactly to the locations of my lymph nodes, so I have been trying to cleanse my lymph nodes with self massage.

I'm also taking otc sudafed to help with the swelling in my inner ear and sinuses. It helps. The virus seems to have only severely affected the right side of my lymphatic system, my left side is completely fine now which gives me a good control to base my recovery off of.

My stomach is a lot better, but I have a hard time eating things I used to eat. Red meat, high fructose corn syrup/sugary foods, dairy, and fried foods will destroy me for about 2 days. So I started taking citrucel powder once a day to help with the IBS that I'm experiencing while my digestive system relearns how to process food.

I feel that once I can get my lymphatic system cleansed out, and get my digestive system back up and running, I should have this thing beat. I was hoping for a full recovery by now, but it looks like it might be about another month or two. Seems I'm on on track to hit the 1 year mark.
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replied February 1st, 2012
Update for January, now entering 11 months.

Improvements:
*Little to no vertigo.
*Stomach is much better, and I am able to eat normally again.
*Acid reflux is much better, and I only get it when I eat certain foods like steak, tea, spicy foods, and too much cheese.
*Heart rate has reduced from 95bpm resting to 75bpm resting.
*Mono 'moments' where I feel out of breath, dizzy, and cold to the bone only last a few hours instead of days, and I quickly rebound from them.
*Post Nasal Drip issues are much better since I started taking sudafed, it helped a lot in clearing out my ear and the big plaque of goo I had stuck in the back of my throat.
*Anxiety and depression is much improved as well, and I'm finally able to watch all my favorite csi shows and horror movies again. I've been doing a lot of catch up.

The only severe problems keeping me from returning to work is severe IBS and continued fatigue, and the unknown of when I'll get a mono moment. I'm assuming that 6+ months of living on a liquid sugar diet (ensure) really messed me up. So I'm starting on probiotics to help regulate my digestive track, and as for the fatigue, I find that I feel much better about an hour after taking omega 3 supplements and a b complex. Also I find that working out in the morning when I wake up helps to wake up my intestines, plus eating constantly helps too to keep my blood sugar levels up.

I'm crossing my fingers that the probiotics are the final push I need to help get me get back to a normal life. Will update again in another month to see how it goes.
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replied May 14th, 2012
Wow this sounds very similar to my 'journey.' I am a 37 year male diagnosed with mono back in October. 7.5 months into this thing, I still have no appetite and feel like I will end up drooling on a couch somewhere. I can only eat late in the evenings and feel anxious all of the time - never before have I had anxiety. I have no energy and my legs and arms twitch. My stomach makes weird noises all of the time. I have went from 187 pounds to currently at 160. Here is my timeline:

late Sept: Had some stress, but nothing more than normal. Traveling a lot. All of a sudden my appetite just turned off. A few days after my appetite went south, the insomonia started. No fever, no coughing, but had extreme sore muscles in the neck and back. After 10 days went to urgent care, where they told me I had mono. Rest was all that was needed.

Nov: Could feel the anxiety building as I went through the weeks. Never really been sick in my life and this thing was freaking me out. I couldn't even watch TV. As I was passing the 6 week peroid of my appetite disappearing, I would start waking up at 2am and 3am in the morning and could not go back to sleep. The insomnia was taking its toll. My wife, who is a Nurse, had to take me in for IVs because I did not sleep or eat anything for 3 days. My doctor order a psych evaluation (I am the most normal, level headed person you could meet), so this did not help much. The therapist said I had mild to moderate depression from life experiences and recommended I take some anti-depressants. Who wouldn't be if you cannot eat or sleep for 6 weeks? My good friend who is a sleep specialist gave me ambien, lunesta - neither worked. I would wake up at 2 or 3 in the morning and just think I am going to die. Finally she put me on Klonopin, which gave me about 5-6 hours of sleep. Tried the anti-depressants for about 9 days and stopped them, because I didn't think they would do anything.

Dec. Appetite improved slightly and gained about 4 pounds. I was just forcing myself to eat. Sleep slightly better, but still anxiety for no reason.

Jan: Entering month 4 - Slowly stopping the Klonopin - down to .50 MG. Still no appetite. Sleep at around 5-7 hours a night

Feb: Still no appetite. Sleep at 5-6 hours a night.

Mar - Saw my doctor who told me my recovery was being compromised by my lack of sleep and diet. He said I should be almost finished with it. Saw the original therapist who recommended anti-depressents. She reaffirmed her diagnosis. Still no appetite, anxious, jittery

Apr - Saw a different therapist who put me on a different anti-depressant. Sleep slighly better. Actually slept a full 8 hour one night. Still no appetite. Therapist said the mono is probably causing a lot of this (she is an NP + therapist) but that we need to address the symptoms. Have been on them for a month, at low levels. Tired during the day, still no appetite. She told me to try and exercise for 10 mins a day, hard, to help fight the anxiety and depression. Which I have done. I jog about 1 mile a day

May - Still pretty much the same. Sleep is slightly better, but have anxiety for now reason. Just try to make it through the day.

All the while I have been working, primarily from home, but man I am just trying to survive. I feel that if my appetite would come back, that my anxiety would go away. I just force myself to eat 1 full meal a day.
I am trying to figure out if I had a nervous breakdown or if this is the mono totally shutting down my body. I just do not feel normal. Again, never had any issue with anxiety or depression. In fact, I am the least depressed person you could meet. Great family and successful job - all I want is to feel normal again.


Interested in hearing more success stories, because I have to get through this. I am tired of taking medicines that do not really work.
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replied June 27th, 2012
Just a quick update!
I'm pretty much over the mono, but after 15 months, I haven't be able to return to work. Today they found my right ear is FULL of mucous and air bubbles, which is causing severe vertigo and dizziness, headaches, etc. My sinuses are full of polyps, and I have to go get a ct scan next month to get examined. I started flonase today, and hope it will help clear up the lingering infection in my head.

As for everything else, I'm doing an world better!! I can eat whatever I like, and I eat a lot, I've regained 9 lbs, and I exercise regularly with no tachychardia (just dizziness from my inner ear infection).

Hopefully after a couple months of flonase, my inner balance will let me start driving and working again!! I'm so ridiculously excited!
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replied June 27th, 2012
Experienced User
That's great news Peaches! But take it slow, i remember hitting the 15 month mark and feeling mostly recovered, but the symptoms still come back from time to time when I over do anything. It will be 3 years for me this November and lets just say I'm having very long stretches of feeling good but still have to be careful.
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replied September 18th, 2012
Similar symptoms/ advice?
Hey guys,

I have had mono for nearly 6 months now, a lot of the same things as you guys as well. Just wondering if anyone has had like sensitivity to temperatures?
For example if I get warm, I get really warm and it takes forever to change. Likewise if I get cold, I get really cold.

Most of the time I am just very warm all over though, I am thinking it is maybe my body starting to finally sort itself out? As when I was at my worst (2-4 months) I was cold 95% of the time.

Anyway, thankyou!!

Kindest Regards. Smile
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replied October 9th, 2012
Just as an update, because I hate it when people don't follow up on their threads.

I went through a bunch of tests and saw a bunch of specialists, everything was inconclusive until completely by chance my gastroenterologist screened me for celiac disease, and it came back positive.

So the past year and a half, my inability to get over mono, was in fact me recovering from mono while simultaneously slipping further into celiac disease, which can cause almost all the same symptoms, making it really hard to differentiate. So, if you're like me and not getting better, and you eat wheat products, ask your doctor to screen you for celiac disease to make sure the cure isn't as simple as a change of diet. That being said, don't stop eating wheat until you're tested, or it can cause a false negative and you can be misdiagnosed.
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