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Mononucleosis And Cold Urticaria

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My 12 year old daughter probably had mono about 3 years ago. Unfortunately when I took her to the doctor they didn't want to test for it because there is no real treatment for it. After a long recovery period (5 weeks of recurring illness and constant fatigue) she finally recoverd but 6 months later we discovered (and had medically diagnosed) she's developed an extreme case of cold urticaria. She now carries and epi-pen and pretty much spends winter indoors. The prescribed antihistimine regime really has no effect and I'm almost as concerned about large doses of these drugs on a long term basis as I am her allergy.
I'm curious about other known side effects of mononucleosis. I've talked to one woman who's daughter experienced a range of problems post-infection ranging from weight gain (particularly to the abdominal and face area) to reoccuring and undiagnosed illnesses. I can't find anything about this. Even finding information on cold urticaria as a side-effect of the virus is difficult and yet it's an acknowledged medical condition. Any other similar experiences or advice?
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replied November 9th, 2007
Active User, very eHealthy
I'm sorry to hear that. I had mono when I was 12 but recovered fairly quickly (2 weeks). I hope that others have more experience for you.
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replied February 22nd, 2008
Reply To MamaB...
I just came across this online and thought I would reply. I am 33 years old and I had a pretty bad case of mono when I was 17 years old. I was out of school for 3 months. Lost about 8 pounds, and continued to "re-lapse" back into mono for the next 8 months or so. (Every time I would expend too much physical energy). When I had mono, I slept about 20 hours a day, I hardly ate anything (normal for people with mono), developed an incredible thirst for orange juice (and oranges), that lasted for about 4-5? years after the mono. While having mono, I also developed an enlarged spleen, hepatitis, anemia, jaundice, respiratory infection, bronchitis, and well, I generally felt like death for a while. I did get better eventually.

But my reason for responding is this: I don't care what doctors say, I am certain that there is a connection between mono- and post, unexplained medical problems. Honestly, I feel like I have had a 'weak' immune system since mono. I developed allergies out of nowhere. I have had a whole range of small, non-serious, yet very annoying and unexplained medical problems since I had mono. I don't think my body ever REALLY recovered. What would a doctor say? Probably that it's all in my head.
But doctors don't know everything.

I would say that mono, which severely attacks your immune system can absolutely cause lasting damage and weaken your immunity over the long term. For most preople? Probably not. Most people who get mono only have it for two or three weeks and then get better. I'm just saying, it's definitely possible.

Like I said, I'm 33 now. I have way too many stupid little medical problems for someone my age & health. I am physically fit. I eat very well. I do not smoke, rarely drink, and do not drugs. No diseases. I could probably stand to exercise a bit more, but otherwise I SHOULD be in very good health. But I'm sick constantly. Allergies. Sinus problems. Infections. Easily exhausted. Extreme sensitivity to cold weather. Get sick easily. Stay sick for 6-8 weeks at a time with something as simple as a head cold.
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replied June 9th, 2008
Reply to kat74
I'm 34, and I got mono for the first time in January. It was a severe case, and I tested positive for both the EBV and CMV viruses. The swelling in my neck was so bad that it had to be treated with steroids so I could breathe. I was in bed for three months.

Anyway, I got better briefly, but now the entire right side of my body is wracked with pain, and no one seems to know why. It hurts all the way from my right hip up to my right ear. The neck and ear pain turned out to be an ear infection, but I don't know why the rest of me hurts. One day it was so bad I went to the ER and was diagnosed with appendicitis. They did a CT scan and discovered it wasn't appendicitis. They said they didn't see anything in there that would cause pain like that, and they sent me home and told me to take an Advil.

I am also constantly nauseated, and I've lost 16 pounds without trying. It has been six months since the initial mono diagnosis, and I just feel like it's been one illness after another. Nothing serious, but definitely annoying enough to interfere with day to day activities. I've seen 7 different doctors about this, and they've run various tests but haven't found anything.

Has anyone else experienced symptoms like this? Got any idea what this could be? Suggestions for solutions?

Thanks.
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replied May 20th, 2009
mono and cold urticaria
The leading doctor on cold urticaria, Dr. Alan Wanderer in Bozeman, MT believes that onset of cold urticaria is often preceded by Mono or other viral infection. (This is not proven yet.) I don't know if this is published, but he has a workbook avail on Amazon.

If you need a great doctor, he is very thorough and knowledgeable on this condition, if you can travel to Bozeman. But there are other good allergists all over the country. You can write to him to see if you are a good candidate for treatment.
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replied August 19th, 2009
I was diagnosed with mono in early 2006, mainly because I went to see a doctor about a rather terrible swollen throat (which was caused by a secondary infection). I didn't have a difficult recovery and about two months later ran a 10 mile race already. After six months though, I suddenly started to feel very weak and again had a swollen throat and glands. Went back to the same doctor, who said it couldn't be the mono again...until the test results came in Sad That time it took me longer to recover and feel relatively fit again (I've always done lots of sports, never smoked, and the only drugs for me is the occasional alcohol on a night out). I did get over it in three months or so, but ever since develop small illnesses and also react alergically to insect bites. It's quite frustrating because before the mono I NEVER got sick... (take that literally, I can't remember going to the doctor before 2006) And now, whenever I sleep too little I get a sore throat, whenever I go 'deep' in sports I catch a cold, etc etc.

What also bugs me at times is that the people around you (quite understandably) think that you constantly whine about nothing. And honestly, I've asked myself if it was not 'all just in my head'. So for that reason I'm happy to read all of your stories here. But it also scares me a bit... I wish all of you and myself a quick recovery of our immune systems!
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replied August 19th, 2009
Also, ever since the mono I easily develop a rash after spending some time in the sun. Luckily this only occurs on my chest, not on my arms or in my face, which would be really bad!
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replied February 2nd, 2010
get tested for PID (primary immunodeficiency disease)
To all of the above posters who have experienced ongoing health problems since having mono, my advice is get tested for immunodeficiencies. I got autoimmune hemolytic anemia several years ago and then developed a severe case of epstein barr a few years after that. Finally, my immunologist tested me and found that I have several immunodeficiencies and I am now receiving IVIG replacement therapy once a month.
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replied March 15th, 2010
mono and cold urticaria
hi there. I'm 35. About two months ago I experienced what I believe it was a mono infection. I haven't confirmed this, but I strongly believe I experienced all the symptoms from the mono. After that I developed a strange, very strange cold urticaria. In another web site I have read the link between the mono virus (EBV) and cold urticaria as a side effect. I attended an allergist and started to take several medicines; after that the cold urticaria has slowered down but it has not dissapeared at all....
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replied April 5th, 2010
Could I have mono?
Hi there...I''m 35, and for the past 3 weeks, I''ve on and off experienced fatigue, swollen tonsils, and stiffness in my upper body. I''ve thought I was just a pansy and quit mentioning symptoms to my husband, because I would never actually get sick, just feel badly for an afternoon or evening. 2 nights ago, I experienced high fever and tonsils so swollen, I couldn''t talk and it was excruciating to swallow. Fever is down now, and tonsils are still very swollen. Could I have mono?
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replied June 3rd, 2010
yes. you could possibly have mono. You really should get tested. I can't imagine going through this virus without knowing what it is for sure. It takes months to recover and there is no treatment, but you need to know what you're dealing with. Adult mono is more common than you think and can knock you on your ass. "Malaise" is a big symptom too. (Knowing something just isn't right with your body." Get the blood test, trust me.
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replied September 27th, 2010
Hello-
Around March of this year I took my girlfriend to the ER because of extreme swelling in her shoulder and neck. The care was less than ideal- she was given IV antibiotics, no diagnosis and released after 24 hours. Her primary doctor referred her to a hematologist who first diagnosed her with cat scratch disease. After more antibiotics, she was feeling better for a few weeks. Then she suddenly experienced similar symptoms (swollen lymph nodes, extreme fatigue, high fever). The hematologist ran a battery of tests, told her that the cat scratch disease was gone but her EBV titers were "off the charts". She was admitted to the hospital for administration of her first IVIG treatment in July. After the treatment her fatigue was increased for about 2 days before she started feeling better. Although her symptoms persisted, they occurred less often. Subsequent blood tests showed the EBV titers to still be extremely high so the hematologist prescribed a second infusion. That infusion was administered on Thursday. Since then, she has been sleeping over 20 hours per day, but does not seem feverish. (It's hard for me to take her temp when she's always asleep.)
I've asked her doctor if we should be concerned about an underlying immune system deficiency causing her to contract both of these uncommon sicknesses. The doctor told me that her immune system is fine- the mono symptoms are actually a "hyper-reaction" of the immune system. That answer does not seem in line with the experiences mentioned above.
Does anyone have any suggestions? Also, should she still be feeling this badly 4 days after the infusion?
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replied January 3rd, 2012
perscription drug withdrawal? mono recovery? Fibro / MS / RA?...
I hope someone can understand and give me some possible answers or direction. Feb. 2011...my doctor put me on a reduction plan to take me off of long term (17 years) - perscription of .50 mg 2x per day of Clonazepam and increased 100mg 1x a day to 2x a day of Sertriline. I was doing very well and asked why and his response was i needed to go off to keep it from becoming less effective. ??...i followed his instructions and a few weeks into it i started having discomfort in my chest and stomache. I returned for follow ups 2x and reported to him what i was experiencing. He insisted it was not related to the change in meds. Which led me to get further medical help. For the next 6 months i went through all kinds of tests to check my heart, lungs and stomache and intestinal areas. Ph tests showed mild acid reflux, breathing tests showed possible asthma and was given treatment for both only to have it cause more complications and more tests reveal neither being an issue. Have had ultrasounds to check all internal organs...spleen pancreas liver gall bladder kidneys etc...all normal. Went to ER several times because of severe stomache pain. Treated with GI cocktails and had blood work done and a CT on one occassion. Still nothing to explain symptoms. Sept. 2011 i started to have muscle and joint pain and flu like symptoms. Again went through an exhaustive battery of tests and sent to a rheumatologist where 4 visits and tests later still no answers other than his medical journals showing that all my symptoms were classic for withdrawal from long term clonazepam treatment. So back on the clonazepam, i recovered fully for only about 3 weeks and symptoms all returned. 2 more ER trips because of severe muscle pain weakness and joint pain in everything it seemed except my face, and awful feeling of malaise and fatique. ER Doc. Said I was depressed....Ya Think?! I explained it was from not feeling well for so long. He reviewed my records and ran a mono test. 3 days later i was notified it was positive. Finally an answer and hope that it would get better within a few months. Feb. 2012 puts me at 6 month recovery time from mono diagnosis. I have been on a rollercoaster ride of better to worse since then. I feel good for a few days even had a ten day stretch of feeling really good. I am back on clonazepam and its a higher dose than i've ever been on and lowered sertraline slightly. Have been on celebrex, lyrica and a slew of other pain and or stomach meds. None have helped or only caused more problems. I am being slowly slid into the fibromyalgia category. I have used up all my sick leave and maxed out in as much co pay dept. As i can handle. I start physical therapy this week to see if it will help me recover muscle retention without making me feel worse as any extra exhertion lands me in bed and feeling more ill for several days. I went from bike riding 8 - 10 miles 3x a week. Hiking and walking every day 2-4 miles and being active at home with chores and yard / garden work to struggling to get through walking a mile and everything else greatly limited and an increase in weight of 15 lbs. My doc. Is really trying to help but it has gone beyond her expertise. Suggests me finding a new psychiatrist and possibly neurologist. Any ideas or any one experiencing similar problems and found anything or anyone that would help give me my quality of life back? I eat vegs fruit, reduce or avoid caffeine refined sugars, trans fats...etc. I don't smoke, drink or do drugs. I do tai chi and am trying to start yoga a little as i feel up to it. Frustrated is not even close to how i feel with all this. Someone please , help?
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replied January 3rd, 2012
Experienced User
Well, I can relate...Mono is not like a flu or cold, where it settles down in a week or two..Mono can take up to a year to resolve..When I had it, I remember thinking it should all be over in 6 months, but it went on longer..Granted, it gets better month to month. But it can take up to a year to resolve. My best advice is to avoid stress and exercise. Contrary to what the medical establishment says, mono is notorious for relapses. So when your feeling good, you ARE NOT out of the woods..So don't jump back into your old routines. Just rest, take it easy and remember to avoid stress and exercise for at least a year..
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replied March 17th, 2012
Good advice! My biggest problem is after 4 months of mono (at the age of 50)and being sick and tired of being sick and tired, I do too much on the days I feel better. It has kicked my butt each and every time. The next day and usually several more afterward I feel awful with flu-like symptoms and exhaustion.
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replied March 24th, 2012
possible RA from mono?
i have had mono since april 2011. i have had pretty much all of the symptoms from the swollen tonsils, lymph nodes and sore throat, to a swollen spleen and liver, and severe joint pain. the sore throat comes and goes, but everything else stays. since April i havent gone a week without most symptoms. I'm lucky if i feel ok for a few days. but so far the joint pain has been my biggest problem. it was tolerable until i got a job. i am on my feet 8 hours a day, and it is quite painful especially for my knees. I was wondering if it is possible that i have gotten Arthritis from the mono. and if it is possible, could it be permanent?
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replied July 10th, 2014
My daughter got mono at 19 years old. The disease presented itself with a swollen knee that looked like a melon. She became horribly ill for two months, had to take a medical leave from college. Eventually went back to school but again was unable to finish the semester.
She lost an entire year of college. She is now 22 and back in school but constantly experiencing annoying medical problems. Last week a beauty mark on her stomach went from normal to a black crusty mess in one night. She has had it biopsied and has yet to hear the results. Her last blood test showed high potassium levels and her glands go up and down with the wind. She is easily exhausted and can sleep 12 hours a night. I am convinced this is an autoimmune problem as a result of mono. She comes from very sturdy stock, was rarely sick as a child and was raised in the country on organic food. She was the poster child for healthy living and is now constantly struggling with bizarre medical problems. She is seeing a immune system specialist next week. If this doesn't help we will have her admitted to a clinic for a full work up.
One Dr. we saw suggested she stay in a warm climate to keep lung ailments to a minimum. She now lives in the south. Hasn't helped much. Wish us luck.
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replied September 14th, 2017
This was posted forever ago but this is one of the only things I can find associated these two things. I'm not even sure if cold urticaria is what I'm experiencing but ever since I've had mono I've noticed that when I drink a cold drink it makes my mouth burn and tingle, but if I eat ice cream it really really burns and tingles on the inside of my mouth and my lips swell and become numb. I have never had any allergies or anything and this just started after I got sick with mono and I'm not able to find anything connecting mono and what I'm experiencing except maybe this. So yeah I understand your struggle in not being able to find anything but yes I am also experiencing that so wooo
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