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Weight Gain, Trouble Staying Awake, Positive EBV, Elevated Potassium And B12, Swollen Face, Stuffy Sinus
Question: Hello. I need help and the Drs I am seeing aren't helping. I do not know where to turn. I have been very sick for around 15 months now, before this I was active, working out in a gym 5 days a week, and in great shape. I started having spells of just not feeling well for short periods of time since 2008, they never lasted long, and I would be back up any going as always full of energy and some to burn. Then in March 2010, I felt just odd, and it's very hard to describe the feeling, but I felt bad enough to call 911, I got to the ER, my pulse was only 38 beats per min, BP was 80 over 40. I felt odd was all, Assad
Admitted to ICU, had inhanced heart XXXXXXX echocardiogram, blood work, you name it, was in 4 days and with absolutely nothing found wrong with me, I was told to stop my like an odd flu without the fever, or body aches, just sick, my energy level started to drop little by little, until I was having more days I was feeling bad than good, and doing normal activities were becoming very difficult to do my energy was so low, then about 10 months ago it became like a living nightmare, I started feeling bad and have not gotten anything but worse since.
I've have been almost completely house bound, I'm back on my BP meds, I've gone from my healthy weight of 140 pounds I'm 5 ft 4 larger bones, and had an athletic body with good muscal tone, I am 53 years old, I could pass for 35 to 40 easy. Now I weigh 182 pounds, because I'm am so sick I can't exercise, anymore, I spend everyday feeling just debilitated, and sick, I have trouble staying awake allot, I try to do just house hold chours and I feel so bad I have to sit down or lay down off and on all day, and get very little done because I feel so bad. I thought it would just eventually go away, I thought maybe I had just been over doing it when I was working out, I really didn't know what to think, and with all my check ups and blood work with the same Doctor for 10 years, all my tests were always ok, I've had Hypotyroidism since 1997, but well controlled always in the normal range with my medication, no problems. I finally went in to see my PCP about three months ago, she was shocked at my appearance. She said I looked so tired, and aged so much within only a little over a year. I told her I just could not get to feeling better, and I felt sick all the time and was having horrible fatuige as well, and my concentration had gotten very poor, my memory as well affected. She went back over my chart, looked at everything my blood work, tests I'd had, everything was normal 5x5 for years. She decided to test for EBV, it came back positive high numbers, so I was sent to an infectious diease Dr, who said it was just antibodies. I thought ok, I did have Glandular fever when I was 2 years old that almost killed me, and trashed my immune system, I took Gamogobulin shots until I was 12, along with allergy shots every week. So I thought ok if it's not active EBV, it's just antibodies. He said I was just probably stressed out.. I take care of a very disabled uncle, sure there's some stress, so I just thought meditation, etc.. For a while and I would eventually start to feel better, but did not, it's only gotten worse, so my PCP sent me to an immuneologist. There she tested me for everything, again, and so many Igms, and Iggs than I've ever seen, she said I had had a very recent or the Virus was active again, also I showed slightly elevated levels of B12, and slightly evelevated potasium a 5.0 I think, and slightly low White blood cell count, this is the first time any blood test done on me has been out of normal range as I said in 10 years. Over the last several days I have gotten even worse, I'm am so sick, so weak, and feel so odd all the time, I have not been able to do anything, and if I try, I'm unstable on my feet, I drop things, can't seem to hold onto anything, my balance is off and on just not very good. I'm having allergy flare ups really bad, if that's what they are, swollen eyes, and face, only one eye watering relentlessly, sinuses are stuffy off and on, the Immunologist gave me Nasonex, that's all, and said I have Epstein Barr Virus, there's nothing that can be done it just has to run its corse. It's been running its corse for well over a year, and I am making no progress in getting any better at all, only worse. I so much want my life back, my high energy level, my work outs at the gym, riding my Motorcycle, all the things I love to do, I can not physically do anymore, as much as I want to so bad, and have tried to just ride my motorcycle, I'm along distance rider, I rode once in 2011, and 25 miles was to much for me, and it wore me out. I have allot of odd symptoms that pop up. I feel like there is something really wrong with me that my Drs are just writting off as its EBV, I feel like I am slowly dying, of what ? I don't know, and I requested to see a Neurologist and a Remotolist, after visiting a support group on line for ppl with EBV, many people on the site suggested getting tested for MS, and several kinds of Cancer, but I have to wait until XXXXXXX 28th to get in to be seen, that's the only appointment avalible. As fast as things are progressing and new symptoms all the time, like, numbness in my arms and hands, and in my legs, and the large bone where neck and back XXXXXXX became so swollen and sore it could not even be touched for 2 months, and still hurts but not to that extreme, but has left my neck stiff, and it never stops aching in that spot on my spine, it can get pretty bad at times.
I am at a loss, I'm now on SSI, and Medicaid Ameri Group, because I can no longer work as a high end bartender, in very up scale restaurants/lounges not any toppless type establishments, ever, and I do not drink or do drugs. Can anyone please tell me what could be wrong with me ? Or help me please ??
I honestly don't want to be on a slab in the mourge after an autopsy before anyone knows what "was" wrong with me. I know I'm getting so much worse, at a much faster rate. So please ! If anyone of you can help me, please do, no one else is doing anything, and anyone with eyes can see how sick I am. I hope writting all this was worth it, because I'm worn out. Please Help Me ! Thank You..
Truly XXXXXXX Stites
Admitted to ICU, had inhanced heart XXXXXXX echocardiogram, blood work, you name it, was in 4 days and with absolutely nothing found wrong with me, I was told to stop my like an odd flu without the fever, or body aches, just sick, my energy level started to drop little by little, until I was having more days I was feeling bad than good, and doing normal activities were becoming very difficult to do my energy was so low, then about 10 months ago it became like a living nightmare, I started feeling bad and have not gotten anything but worse since.
I've have been almost completely house bound, I'm back on my BP meds, I've gone from my healthy weight of 140 pounds I'm 5 ft 4 larger bones, and had an athletic body with good muscal tone, I am 53 years old, I could pass for 35 to 40 easy. Now I weigh 182 pounds, because I'm am so sick I can't exercise, anymore, I spend everyday feeling just debilitated, and sick, I have trouble staying awake allot, I try to do just house hold chours and I feel so bad I have to sit down or lay down off and on all day, and get very little done because I feel so bad. I thought it would just eventually go away, I thought maybe I had just been over doing it when I was working out, I really didn't know what to think, and with all my check ups and blood work with the same Doctor for 10 years, all my tests were always ok, I've had Hypotyroidism since 1997, but well controlled always in the normal range with my medication, no problems. I finally went in to see my PCP about three months ago, she was shocked at my appearance. She said I looked so tired, and aged so much within only a little over a year. I told her I just could not get to feeling better, and I felt sick all the time and was having horrible fatuige as well, and my concentration had gotten very poor, my memory as well affected. She went back over my chart, looked at everything my blood work, tests I'd had, everything was normal 5x5 for years. She decided to test for EBV, it came back positive high numbers, so I was sent to an infectious diease Dr, who said it was just antibodies. I thought ok, I did have Glandular fever when I was 2 years old that almost killed me, and trashed my immune system, I took Gamogobulin shots until I was 12, along with allergy shots every week. So I thought ok if it's not active EBV, it's just antibodies. He said I was just probably stressed out.. I take care of a very disabled uncle, sure there's some stress, so I just thought meditation, etc.. For a while and I would eventually start to feel better, but did not, it's only gotten worse, so my PCP sent me to an immuneologist. There she tested me for everything, again, and so many Igms, and Iggs than I've ever seen, she said I had had a very recent or the Virus was active again, also I showed slightly elevated levels of B12, and slightly evelevated potasium a 5.0 I think, and slightly low White blood cell count, this is the first time any blood test done on me has been out of normal range as I said in 10 years. Over the last several days I have gotten even worse, I'm am so sick, so weak, and feel so odd all the time, I have not been able to do anything, and if I try, I'm unstable on my feet, I drop things, can't seem to hold onto anything, my balance is off and on just not very good. I'm having allergy flare ups really bad, if that's what they are, swollen eyes, and face, only one eye watering relentlessly, sinuses are stuffy off and on, the Immunologist gave me Nasonex, that's all, and said I have Epstein Barr Virus, there's nothing that can be done it just has to run its corse. It's been running its corse for well over a year, and I am making no progress in getting any better at all, only worse. I so much want my life back, my high energy level, my work outs at the gym, riding my Motorcycle, all the things I love to do, I can not physically do anymore, as much as I want to so bad, and have tried to just ride my motorcycle, I'm along distance rider, I rode once in 2011, and 25 miles was to much for me, and it wore me out. I have allot of odd symptoms that pop up. I feel like there is something really wrong with me that my Drs are just writting off as its EBV, I feel like I am slowly dying, of what ? I don't know, and I requested to see a Neurologist and a Remotolist, after visiting a support group on line for ppl with EBV, many people on the site suggested getting tested for MS, and several kinds of Cancer, but I have to wait until XXXXXXX 28th to get in to be seen, that's the only appointment avalible. As fast as things are progressing and new symptoms all the time, like, numbness in my arms and hands, and in my legs, and the large bone where neck and back XXXXXXX became so swollen and sore it could not even be touched for 2 months, and still hurts but not to that extreme, but has left my neck stiff, and it never stops aching in that spot on my spine, it can get pretty bad at times.
I am at a loss, I'm now on SSI, and Medicaid Ameri Group, because I can no longer work as a high end bartender, in very up scale restaurants/lounges not any toppless type establishments, ever, and I do not drink or do drugs. Can anyone please tell me what could be wrong with me ? Or help me please ??
I honestly don't want to be on a slab in the mourge after an autopsy before anyone knows what "was" wrong with me. I know I'm getting so much worse, at a much faster rate. So please ! If anyone of you can help me, please do, no one else is doing anything, and anyone with eyes can see how sick I am. I hope writting all this was worth it, because I'm worn out. Please Help Me ! Thank You..
Truly XXXXXXX Stites
Hello and thanks for the question.
I would first like to suggest tht you stop taking the Crestor. Sometimes this type of medication can contribute to severe fatigue and muscle aches. Try stopping it for 10 days and see if there are any changes. If not, then you can resume taking it.
Also I would suggest a thyroid panel to include TSH, Free T3 and total T4. Sometimes we rely solely on the TSH which may not give a clear picture of what id going on with the thyroid.
Also, a referral to a rheumatologist would be reasonable as this could be an inflammatory disorder. There are a whole host of tests which this type of doctor may request on your behalf as well.
I doubt that there is any time of hematological disorder or malignancy going on.
While there is really n strong indication, some physicians may suggest a CT scan of the chest, abdomen and pelvis to rule out swollen lymph glands and also to rule out a malignancy. I still consider cancer to be lower on the l;ist of what could be causing this.
Lastly, I am not dismissing your physical symptoms but we must not ignore the possibility of depression playing a role. Clinical depression can manifest in many ways and this should be considered as part of the discussion with your doctors as well.
These are my suggestions at this point for you. If you desire - and have the resources - you could visit a place such as the mayo clinic where they might perform a comprehensive evaluation to determine what they think is going on.
Please let me know if you have any additional concerns.
Dr. Robert
I would first like to suggest tht you stop taking the Crestor. Sometimes this type of medication can contribute to severe fatigue and muscle aches. Try stopping it for 10 days and see if there are any changes. If not, then you can resume taking it.
Also I would suggest a thyroid panel to include TSH, Free T3 and total T4. Sometimes we rely solely on the TSH which may not give a clear picture of what id going on with the thyroid.
Also, a referral to a rheumatologist would be reasonable as this could be an inflammatory disorder. There are a whole host of tests which this type of doctor may request on your behalf as well.
I doubt that there is any time of hematological disorder or malignancy going on.
While there is really n strong indication, some physicians may suggest a CT scan of the chest, abdomen and pelvis to rule out swollen lymph glands and also to rule out a malignancy. I still consider cancer to be lower on the l;ist of what could be causing this.
Lastly, I am not dismissing your physical symptoms but we must not ignore the possibility of depression playing a role. Clinical depression can manifest in many ways and this should be considered as part of the discussion with your doctors as well.
These are my suggestions at this point for you. If you desire - and have the resources - you could visit a place such as the mayo clinic where they might perform a comprehensive evaluation to determine what they think is going on.
Please let me know if you have any additional concerns.
Dr. Robert
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Greetings, Dr XXXXXXX and I thank you for your response. I've had the T3 and T4 checked by both Drs, all was ok with that. I'm not suffering from depression at all, a friend in the EBV group suggested that same thing, there are allot of depressed people in that group, so, I asked to my PCP I have known for 10 years about that, and she said, "if it was anyone else, she might think about that as an option XXXXXXX but she said, No, its not depression XXXXXXX I love me, I love being me, I just want to get well so I can be me again, and do all the things I love again. I am very frustrated, and a bit frightened, who wouldnt be after being so sick for so long ? Over a year is a long time with no sign of getting better yet, but I keep hoping. But depressed ? No, I am truly just having a very hard time being so sick, like this, it feels like my body is giving out on me, and I cant stop it. I will try stopping the Crestor, it would be so wonderful if that's all that's causing me to be this ill. So ? I shouldn't worry about the EBV, and elevated B12, Elevated Potassium Level, or Low White Cell Count ? Those blood tests being abnormal are nothing to be concerned about ? I'm just trying to get a handle on this so I'll know how to fight back, and what to fight back with to get well. What about the EBV, and the Immunologist saying she thinks the Virus is active, because all the tests she ran and all the numbers are all high, the IgGs and IgMs etc.. But the Infectious Diease Dr I saw just before her said it's just antibodies ? Who do I believe ? It is very confusing, and the Drs don't communicate with each other, and my PCP is doing the best she can to send me to specialists that might can help me, and I'm getting no clear answers, and conflicting opinions between the two specialists, just conflicting diognoses on this EBV thing. I will be seeing a reumotologist in Feb of that's the earliest appointment they have at UT Phsycians here in Houston, and my Neurology appointment is in XXXXXXX the 28th, I swear a person could die waiting just to see a Dr. I do thank you for your time. I will try stopping the Crestor, if that cures me, I will be singing and dancing all night if it's that simple. I can sure hope so. Again thank you very much for your time, I just want something to be able to put into play and go to bat with, and get well, that's all. Sincerely XXXXXXX Stites.. ps...Have A Great Day.
Hello and thank you for your follow-up.
Regarding the potassium this is something that can fluctuate. As long as your potassium level is not higher than 5.5 I would not be too concerned and rechecking it would be reasonable within a couple of weeks.
The same is true for the white blood cells. This can fluctuate also. I would again suggest checking the white blood cell count with a complete blood count in a few weeks. The white blood cell count can fluctuate from time to time it is sometimes related to exposure to viruses or infections.
The elevated B12 level is not something you need to worry about. If you're taking any supplements including herbal medications or vitamin supplements I would've stopped all of those as well.
Regarding the EBV it is theoretically possible that this virus might be active in your body and could be contributing to some of your symptoms. Unfortunately we do not have any good medication to keep this type of virus under control. Usually the immune system will eventually get things under control.
I would also suggest that your doctor check an LDH level. If this level is elevated it might indicate that there is some type of issue with your lymph nodes. This is unlikely but it is still worthy of checking.
Thanks again for sending your question. Please let me know if you have any other thoughts.
Sincerely,
Dr. Robert
Regarding the potassium this is something that can fluctuate. As long as your potassium level is not higher than 5.5 I would not be too concerned and rechecking it would be reasonable within a couple of weeks.
The same is true for the white blood cells. This can fluctuate also. I would again suggest checking the white blood cell count with a complete blood count in a few weeks. The white blood cell count can fluctuate from time to time it is sometimes related to exposure to viruses or infections.
The elevated B12 level is not something you need to worry about. If you're taking any supplements including herbal medications or vitamin supplements I would've stopped all of those as well.
Regarding the EBV it is theoretically possible that this virus might be active in your body and could be contributing to some of your symptoms. Unfortunately we do not have any good medication to keep this type of virus under control. Usually the immune system will eventually get things under control.
I would also suggest that your doctor check an LDH level. If this level is elevated it might indicate that there is some type of issue with your lymph nodes. This is unlikely but it is still worthy of checking.
Thanks again for sending your question. Please let me know if you have any other thoughts.
Sincerely,
Dr. Robert
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Ok, will do. I will make an appointment to have the levels rechecked in my blood work, and leave off the Crestor for a while, and hope things start to turn around for me soon. 16 months of just non stop sick, is tough, if it is Active EBV, maybe it will let up soon, I hope, I have a life to live, all I want is to get well, and live it ! I wish the Drs that are seeing me here, could at least communicate with each other, and give me one difinitive answer, and not one saying the opposite of the other, and I'm in the middle confused as to what's going on with my health.. I miss being so energetic, and healthy, and active, I want it back, I'll fight, if I can get something to fight with, and know what I'm fighting in the first place. That, would sure help. Just to know, what is making me so sick, and for such a very long term now. Thank You. Truly XXXXXXX .
Hello again.
I completely understand your frustration and how this can be very demoralizing when you're dealing with symptoms which have been so debilitating for the past year and a half.
I sincerely hope that it is something as simple as stopping your cholesterol medication. If not I am happy you're going to follow up with your doctor for the additional testing.
Please feel free to share with us regarding updates related to your condition. Hopefully you will be able to report steady improvement in the coming weeks.
Sincerely,
Dr. Robert
I completely understand your frustration and how this can be very demoralizing when you're dealing with symptoms which have been so debilitating for the past year and a half.
I sincerely hope that it is something as simple as stopping your cholesterol medication. If not I am happy you're going to follow up with your doctor for the additional testing.
Please feel free to share with us regarding updates related to your condition. Hopefully you will be able to report steady improvement in the coming weeks.
Sincerely,
Dr. Robert
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you Dr XXXXXXX I'm sorry it's taken me so long to reply, I started feeling really bad again not long after I last wrote to you, it's an on going nightmare, and I haven't been able to sit up or stand up without feeling sick, again, and everytime it happens the... I call them sleeping spells, because I don't know what else to call them, it's not like you just wanta go to sleep, it's more like your body or brain gives you no choice at all, it feels more like passing out only you lay down first instead of waiting to hit the floor, and then I'm out, sometimes hours, sometimes days at a time, I'm lucky there is someone here who can get me awake long enough to get up to go to the bathroom and make sure I drink water, and eat something, and try to keep me awake for a while, and lord knows I want to stay awake, and I fight to stay awake, but not always successful at times, because when that is happening to me, I am going out whether I am sitting up, standing up, or laying down, I can't control it, all I can do is go through it until it lets up. This thing that has has me so messed up for so long is just unreal, I don't know how else to put it, it's a struggle to say the least. Once I get past theses sleeping spells, then it's just back to the relentless fatuige, and just feeling sick again, just before these sleeping spells hit, I always feel this kind of odd dizzy feeling, not real bad it's just there. I just woke up a few hours ago, and hoping its over and I can stay awake for a while, I have a house to clean, and things I have to get done. I just wish all of this would just stop. Maybe with the one of the Drs the Neurologist, or Reumotoligst I'll be seeing, will figure this out. I've never been so sick for so long in my life, the normal colds n flus here and there, but those always went away, this never goes away. Yes it is very frustrating, but I'm hanging in there, and now that I'm awake again Im going to fight to stay awake and hope it has passed, I'll know in a while here, if I don't feel that that odd feeling coming on for several hours, and I'm able to stay awake, then it has passed, at least for a time. I do thank you for all your help, and will be fallowing up with my PCP, and seeing the Drs she's sending me to go see. Hopefully one of them can find an answer to all of this, and get me back to doing all the things I love !! I had my Trip to Sturgis planned for this last August for way over a year before we were all to leave from Houston, I was so excited about that, and missed it because I got sick, so maybe I can plan for next year, I own my own Motorcycle, it's an older XXXXXXX but good up keep has kept it running good ! I have been to Sturgis many times in younger days, it's great, so much to see, and a wonderful ride !! I sure was looking forward to making that ride again, and spent 3 years saving alittle here n there to go !! So maybe next year I hope ! Maybe by then I'll be well, and back out doing all the wonderful things I love to do, or they will put a name to this thing and find a treatment that will help, and I will be back in my life again, and kicking up my heels, I hope so ! I miss it so much, it's been so long since I've been able to ride my Bike, and have missed so many fun rides with other ppl who love to ride as much as I do. It's so much fun, they all want me back out there with them too. Wish me luck. Thanks Dr XXXXXXX .. Wishing you a great day.
Thank you once again for sharing your medical concerns with us.
Please let me know if you have any specific medical concerns in the future.
Sincerely,
Dr. Robert
Please let me know if you have any specific medical concerns in the future.
Sincerely,
Dr. Robert
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Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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