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Reactivated Mono symptoms?
Hello, all. This is my first post. I am at my wits end with my doctor and need some information from people who have experienced this. I am a 36-year-old female with no long term health issues other than recurring ovarian cysts (unilateral oophorectomy in 2010) and acute but very occasional bouts of reflux well controlled with omeprazole.
In January 2015, I came down with an infected chazalion in my right eye. I've never experienced anything like it. My eye was almost swollen shut, the cyst was the size of a pea. Even with antibiotics it took me several weeks to get over it. While the cyst has completely resolved, the vision in my eye is still effected even now, ten weeks later.
About three weeks ago, I started to feel overly tired, having night sweats, and was experiencing pain in the upper left quadrant of my abdomen, just under the ribcage. It was a constant dull ache that seemed to inflame anytime I ate or drank. At one point I thought I was having a cardiac event because the pain was so strong and radiated through to my back and shoulder, but it passed. I dealt with it for a couple weeks, assuming it was stress stomach. After two weeks, I woke in the night with pain in the bottom of my heel. I figured I must really be out of whack so I went to my doctor. Only the NP had an appointment. She diagnosed reflux (much to my protestations), upped my omeprazole presciption, and sent me home. She dismissed the foot pain.
Two days later, the nodes on the sides of my neck, groin, and face swelled to marble sized. I started experiencing aches in the small joints of my fingers, toes, and wrists. I returned to the office and saw an MD (there are three in the office). I had no fever, no organ swelling that could be determined by physical exam, no sore throat. I asked about mono and was dismissed (you've likely already had it, he says). When rapid strep came back negative, we agreed on bloodwork. In the meantime, I am sent home with the diagnosis of "some virus" that is enlarging my nodes, which in turn is causing the abdominal pain. Three days later the nurse calls me and says, "you have reactived mononucleosis" and "there is no treatment, just rest and fluids".
Since I'm given literally no information from the nurse, I start to research. What the heck else am I supposed to do? What I find seems to indicate that it is not common for this virus to reactivate and cause noticeable symptoms. Much of the info I was able to find implied there was often a larger issue, such as immune stress. So I called the doctor back with some questions, like: "does this indicate a larger problem with my immune system?", "should I expect additional symptoms?" You know, things normal people ask when they've been given a diagnosis and no additional information besides "rest and fluids". The nurse calls me back and tells me the doctor does not believe it is indicative of larger immune issues and it would be unlikely that I would infect anyone. (My husband most certainly became infected due to sexual activity with me before diagnosis, as he had never had mono, and is Having a hell of a time with it at age 43)
Wearing on a few more days (now 12 days from initial visit to NP with abdominal pain), my nodes in neck and face are no longer swollen, but the abdominal and foot pain persists. Now, I am also experiencing nausea, vomiting, and diarrhea. I call the doctor back, and leave a message with a nurse asking if this is part of the normal progression of mono, and wait. I just received a call back from the nurse saying doctor thinks it's a secondary viral infection causing gastroenteritis because this is "not part of the symptoms associated with mononucleosis". Again, no fever. The marked fatigue, sweating, and foot pain persists and the abdominal pain briefly reaches unmedicated birth levels after a bout of vomiting. She tells me he wants to see me again. I question why, as nothing was said about additional tests or diagnostics, and as I've learned, there are no treatments for EBV, mononucleosis, or gastroenteritis that cannot be administered at home. I have just heard back a second time from his nurse indicating that they could send me for an abdominal ultrasound to determine if I do have an enlarged spleen that was missed on physical exam, but what, exactly, does that achieve besides knowing my spleen is enlarged? I do not engage in contact sports or any activity that I feel would put me at risk for a rupture.
If, indeed, these gastro symptoms are yet another viral infection, this will be the third infection I have had in as many months (eye infection, EBV reactivation, and this supposed gastro virus). My questions are these: is my doctor correct on all counts? Are these symptoms all part of reactivated mono? Should I seek a second opinion? How long should I expect these wildly varying symptoms to occur?
I have a very active four-year-old daughter that I can barely keep up with. She suffers when I do, and especially suffers when both of her parents are down with mono. I need some information that is not second hand from a nurse without throwing money down the drain for misdiagnosis after misdiagnosis.
Please, anyone who can share their experience, recommend a source of good info, or possibly even turn me toward a doctor who deals with EVB and reactivated mono in the Triangle area of North Carolina? This is going on week 3 of misery and I just can't take it anymore. Plus, I think my doctor is sick of me and it's not a feeling I'm appreciating much.
Thank you.
In January 2015, I came down with an infected chazalion in my right eye. I've never experienced anything like it. My eye was almost swollen shut, the cyst was the size of a pea. Even with antibiotics it took me several weeks to get over it. While the cyst has completely resolved, the vision in my eye is still effected even now, ten weeks later.
About three weeks ago, I started to feel overly tired, having night sweats, and was experiencing pain in the upper left quadrant of my abdomen, just under the ribcage. It was a constant dull ache that seemed to inflame anytime I ate or drank. At one point I thought I was having a cardiac event because the pain was so strong and radiated through to my back and shoulder, but it passed. I dealt with it for a couple weeks, assuming it was stress stomach. After two weeks, I woke in the night with pain in the bottom of my heel. I figured I must really be out of whack so I went to my doctor. Only the NP had an appointment. She diagnosed reflux (much to my protestations), upped my omeprazole presciption, and sent me home. She dismissed the foot pain.
Two days later, the nodes on the sides of my neck, groin, and face swelled to marble sized. I started experiencing aches in the small joints of my fingers, toes, and wrists. I returned to the office and saw an MD (there are three in the office). I had no fever, no organ swelling that could be determined by physical exam, no sore throat. I asked about mono and was dismissed (you've likely already had it, he says). When rapid strep came back negative, we agreed on bloodwork. In the meantime, I am sent home with the diagnosis of "some virus" that is enlarging my nodes, which in turn is causing the abdominal pain. Three days later the nurse calls me and says, "you have reactived mononucleosis" and "there is no treatment, just rest and fluids".
Since I'm given literally no information from the nurse, I start to research. What the heck else am I supposed to do? What I find seems to indicate that it is not common for this virus to reactivate and cause noticeable symptoms. Much of the info I was able to find implied there was often a larger issue, such as immune stress. So I called the doctor back with some questions, like: "does this indicate a larger problem with my immune system?", "should I expect additional symptoms?" You know, things normal people ask when they've been given a diagnosis and no additional information besides "rest and fluids". The nurse calls me back and tells me the doctor does not believe it is indicative of larger immune issues and it would be unlikely that I would infect anyone. (My husband most certainly became infected due to sexual activity with me before diagnosis, as he had never had mono, and is Having a hell of a time with it at age 43)
Wearing on a few more days (now 12 days from initial visit to NP with abdominal pain), my nodes in neck and face are no longer swollen, but the abdominal and foot pain persists. Now, I am also experiencing nausea, vomiting, and diarrhea. I call the doctor back, and leave a message with a nurse asking if this is part of the normal progression of mono, and wait. I just received a call back from the nurse saying doctor thinks it's a secondary viral infection causing gastroenteritis because this is "not part of the symptoms associated with mononucleosis". Again, no fever. The marked fatigue, sweating, and foot pain persists and the abdominal pain briefly reaches unmedicated birth levels after a bout of vomiting. She tells me he wants to see me again. I question why, as nothing was said about additional tests or diagnostics, and as I've learned, there are no treatments for EBV, mononucleosis, or gastroenteritis that cannot be administered at home. I have just heard back a second time from his nurse indicating that they could send me for an abdominal ultrasound to determine if I do have an enlarged spleen that was missed on physical exam, but what, exactly, does that achieve besides knowing my spleen is enlarged? I do not engage in contact sports or any activity that I feel would put me at risk for a rupture.
If, indeed, these gastro symptoms are yet another viral infection, this will be the third infection I have had in as many months (eye infection, EBV reactivation, and this supposed gastro virus). My questions are these: is my doctor correct on all counts? Are these symptoms all part of reactivated mono? Should I seek a second opinion? How long should I expect these wildly varying symptoms to occur?
I have a very active four-year-old daughter that I can barely keep up with. She suffers when I do, and especially suffers when both of her parents are down with mono. I need some information that is not second hand from a nurse without throwing money down the drain for misdiagnosis after misdiagnosis.
Please, anyone who can share their experience, recommend a source of good info, or possibly even turn me toward a doctor who deals with EVB and reactivated mono in the Triangle area of North Carolina? This is going on week 3 of misery and I just can't take it anymore. Plus, I think my doctor is sick of me and it's not a feeling I'm appreciating much.
Thank you.
Hello, I'm sorry to hear you have EBV again.
I just turned 22 last week and I also have EBV. I've had active levels every month for over two years now. Something we do have in common other than the EBV, this is my 3rd having it as well, except this time mine hasn't gone away.
I'm in the same boat, I'm looking for a specialist that deals with Chronic EBV.
First thing you should try,
Find a Rhumatologist you can see. Make sure it's an experienced, well respected one. I suggest a Rhumatologist because they deal with autoimmune disorders and diseases like Fibromyalgia, Lupus, Rhumatoid Arthritis, Chronic Fatigue Syndrome. If you search, like I have, for a doctor who deals with EBV, it comes up an infectious disease doctor, which there are sooooo many of them and they tend to be general doctors as well.
What needs to be done is a thorough blood test for EBV. EBV is tricky, since the Virus remains in your system forever, it will always show on a blood test, but if your doctor doesn't test the right things and/or doesn't know what they're looking at then it's possible you are not active. The test will show positive, active or not, it matters what your levels are all at.
Enlarged spleen, from the huge amount of research I've done, I've done a lot, is extremely rare. It's a good sign tho that your doctor is taking the proper precautions and doing an ultra sound to make sure. Your docs office seems from what you said, like a good office for a suffering patient.
If your having a lot of stomach pain, cramps, acid reflux... I suggest go to the store and get some of these things:
IBS supplement
GasX type supplement, chewables work best
Probiotic
Some sort of laxative
My reasons are, a GasX supp will tell you whether it's just gas or not(you'll notice right away), and a laxative supp because it will help clear you out and keep things going smoothly. Those two things can atleast give you an idea whether your having just digestive issues, or there's something actually wrong going on in there. If your spleen is enlarged, feel around on your left adomen to see if you feel anything bulging...that's the physical exam a doctor does.
Wish you the best of luck, sorry I couldn't be anymore helpful.
Hey let me know if you wind up finding a specialist that deals with Epstein Barr Virus.
Will
I just turned 22 last week and I also have EBV. I've had active levels every month for over two years now. Something we do have in common other than the EBV, this is my 3rd having it as well, except this time mine hasn't gone away.
I'm in the same boat, I'm looking for a specialist that deals with Chronic EBV.
First thing you should try,
Find a Rhumatologist you can see. Make sure it's an experienced, well respected one. I suggest a Rhumatologist because they deal with autoimmune disorders and diseases like Fibromyalgia, Lupus, Rhumatoid Arthritis, Chronic Fatigue Syndrome. If you search, like I have, for a doctor who deals with EBV, it comes up an infectious disease doctor, which there are sooooo many of them and they tend to be general doctors as well.
What needs to be done is a thorough blood test for EBV. EBV is tricky, since the Virus remains in your system forever, it will always show on a blood test, but if your doctor doesn't test the right things and/or doesn't know what they're looking at then it's possible you are not active. The test will show positive, active or not, it matters what your levels are all at.
Enlarged spleen, from the huge amount of research I've done, I've done a lot, is extremely rare. It's a good sign tho that your doctor is taking the proper precautions and doing an ultra sound to make sure. Your docs office seems from what you said, like a good office for a suffering patient.
If your having a lot of stomach pain, cramps, acid reflux... I suggest go to the store and get some of these things:
IBS supplement
GasX type supplement, chewables work best
Probiotic
Some sort of laxative
My reasons are, a GasX supp will tell you whether it's just gas or not(you'll notice right away), and a laxative supp because it will help clear you out and keep things going smoothly. Those two things can atleast give you an idea whether your having just digestive issues, or there's something actually wrong going on in there. If your spleen is enlarged, feel around on your left adomen to see if you feel anything bulging...that's the physical exam a doctor does.
Wish you the best of luck, sorry I couldn't be anymore helpful.
Hey let me know if you wind up finding a specialist that deals with Epstein Barr Virus.
Will
Are you taking any Vitamins and Minerals? If not this combination could alleviate symptoms. Vitamin A, B, C, E, CQ10, Selenium, Zinc...this combination will boost your immune system and may fight off many of the symptoms. This combination would have to be taking daily...it will take a week or two B4 you feel any effects. Consult your doctor to see if you have any allergic reaction with these vitamins and minerals. If you start them let me know if it helps...all the best
The effects of re-activated mono can last for years to varying degrees and can be the blame for all your problems. Your nurse is correct: rest, fluids and a healthy diet are the only course of action. I will add that rest is paramount to recovery.
Lilulay, I am not a nurse and I'm sorry I don't have answers for you (or for myself for that matter) but I wonder if you tried to see an infectious disease specialist? Perhaps they can help you more than your regular doctor? I'm sorry you are going through a hard time, especially while trying to raise your daughter. I hope you find answers. Best of luck to you.
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