Heres my situation:
I became ill with mono back in early September '08, and I had a VERY hard time getting over it. The infection stayed active all the way through the end of November (active according to blood tests). However I feel like ever since the early September time period I haven't had a single day where I really felt "good," or at least the way I used to feel. I feel like I'm sick more than I'm healthy- every time I try and get back into my normal routine (working out daily and going out occasionally on the weekends, in addition to school and work) I get sick. Although it sounds like I'm doing a lot, I do get more rest than average (7-9 hours of sleep a night) and eat healthier and take care of myself better than anyone I know. But I CANNOT stay healthy. When I get sick I typically get a low grade fever, bad fatigue, and sometimes mucous, congestion, sinus pain, and a soar throat. The fever and the fatigue are really what is keeping me from being myself, and I feel depressed because of it, I just want to be "normal" again. My question is, is it possible that EBV is what's causing my immune deficiency? Is it possible that even though it is now 8 months later, that I never really got over mono? I have been to the doctor several times, had several blood tests, and everything else seems to be OK. If EBV isn't the cause, what else could be causing this constant sickness? Is there something else I should be worried about, or is there anything that may help my sickness? Any help would be appreciated, I really can't take it anymore!
Hi ! I hope you take my comments seriously because I was in your shoes when I was only 18 years old. It took me many years to finally get a "Chronic Fatigue Immune Dysfunction Syndrome" diagnosis.
EBV can be a very serious virus. Viruses such as EBV and HHV-6 live in our cells. I think it is an estimated 10% of people who have mono are later diagnosed with CFS.
According to the CDC, a CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:
cognitive dysfunction, including impaired memory or concentration
postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
Other Common Symptoms
In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include:
irritable bowel, abdominal pain, nausea, diarrhea or bloating
chills and night sweats
shortness of breath
visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
psychological problems (depression, irritability, mood swings, anxiety, panic attacks)
weight loss or gain
http://www.cdc.gov/ncidod/diseases/ebv.htm --- EBV (Centers for Disease Control)
Since you've been ill for over 6 months, I would consider either seeing a Naturopathic physician or seeing a physician who frequently diagnoses and treats CFS patients --- google "Co Cure's Good Doctor List" to find a list of physicians in your area.
But please remember (since you are so young), that once you get a diagnosis... it stays with you for life. If you get a diagnosis, then it is vital to make sure that you have continuous healthcare coverage. (at least until we fix the healthcare crisis in our country!)
Here is a link to our health care pages... I highly recommend checking it out.
I just had a few questions do you have the "shakes", twitching? when you first became ill did it just at first seem like a bad flu but you just never really got better? If you read my profile I think we went through similar ordeals. Do you have intestinal tract problems such as bloating and gassyness or uncomfortable bowel movements? Do you think you contracted some sort of STD and the physician you went to put you on broadspectrum antibiotics? Your young so you got time on your side.
Hi, I'm a 24y/o male who also got mono in early 2008. The initial mono wasn't that bad and lasted about 3-4 weeks. My tests all looked good, so my doctor said it was fine to get back into my normal routine (working out, being active outdoors, etc.). Then I had a MAJOR relapse (confirmed by EBV levels tests) that lasted pretty much the rest of the year. I still feel like I'm not completely over it, but I also know that I'm out of shape physically now. I'm almost afraid to try to start being active again for fear of having another relapse. In fact, as I write this, I've had a sore throat for about 5 days, so I'm hoping it doesn't turn into anything else. Anyway, I guess what I'm trying to say is that it will just take time. I would stop trying to work out and such for like 1/2 year. That's what the infectious disease specialist I went to said, so I've done that and I have noticed a gradual increase in energy. My 6 months aren't up yet though, so I'm still really trying to make sure I don't overdo it. So not sure how much this helps you, but I guess at least you're not alone in dealing with this! I wish you well in your recovery!
This is why the CFS experts are saying that if you have Chronic Fatigue Syndrome Immune Dysfunction, then you need to be treated right away. If you don't.... this is what could happen. I'm not trying to scare anyone, but it happened to me and others:
ezet- I don't have any shakes or twitching, and when I first got mono I had some symptoms of the flu, but I wasn't nauseated. It was just a horrible soar throat that lasted quite some time, fever, weakness, and such. And it has seemed that lately my bowl movements are a bit more frequent and irregular. And for the latter, the only antibiotics I have been prescribed recently were for a sinus infection, which I only took for 10 days.
9- Thanks for the input... I did have one major relapse early on, before I even realized I had mono. I was put on antibiotics for my initial symptoms, thought I got better but then just tanked again in a couple of weeks. I hope that the mono is all that is causing this, although it does suck I'd be happy to know its nothing more serious. I've been trying to rest as much as possible lately but being a college student I don't always have time to take it easy... Hopefully for the both of us things start to improve, I hate not being able to be active!
I had EBV when I was 12 (I am now 23) that started in October, but wasn't diagnosed until November. From November to January I was only able to go to half days of school. My mono didn't include the sore throat, but I was EXHAUSTED, and had severe stomach pain and couldn't really eat anything. I lost around 18 pounds. Before the mono I was an incredibly healthy and active kid. I don't want to say that this is going to be your case, but after I got mono I was never the same.
I have had a number of health issues since I was 12 and pretty much never got through a quarter of school without missing 10 or more days due to illness. My health history is long, but to sum up I was diagnosed with both fibromyalgia and CFS a year ago.
I am currently seeing a specialist (focuses on fibro, CFS, Lyme, EBV, and co-infections) that is retesting my EBV titer to see if it is active. It is possible to have chronic EBV that is always in your system and can reactivate with stress, over-stimulation, or a weakened immune system and this could be your case.
It is VERY important that you see a non-traditional doctor for your symtoms (symptoms) like Plateletgal suggested. It is hard, because they are usually not covered by insurance, but they are the ones that focus their attention to the latest research in CFS, Fibro, EBV and other illnesses that are being constantly debated by health professionals. Please see a naturopath or a doctor that specializes in EBV, Fibro, and CFS. If you catch this now it could save you years of illness.
Sadly, I have been in your boat of wanting to be "normal" for 11 years now. I spent about 9 of those years seeing traditional doctors and they never helped me. Since seeing non-traditional doctors I have made some progress, and hope that my newest doctor will get me back to "normal" soon!
If you need someone to vent to or have more questions feel free to PM me.
Thanks so much for the input. When you say non-traditional what do you mean by that? I have an appointment with an infectious disease specialist in a couple of weeks, and am hoping to find some answers there.
The infectious disease specialist may be some help, but the problem with EBV is that it is one of the illnesses that there is a lot of new research about. For example, during my years of illness I have had one doctor tell me that EBV can be chronic and reactivate and then I would go to another doctor and they would say that you cannot get mono twice/it can't be chronic/can't reactivate. It is an illness that is still much debated among health professionals.
Therefore, it is best to find a doctor that does extensive research in illnesses like EBV, chronic fatigue and fibromyalgia. Usually these doctors own their own practices and are often naturopathic (meaning they approach health care using more natural healing products like supplements instead of chemical-based medication). I suggest googling "Co Cure's Good Doctor List" that PlateletGal suggested which will give you a list of docs in your area that are more informed on the latest EBV research. There is a chance that your infectious disease specialist will be, but often these types of traditional doctors have so much to keep up to date on that they don't always know the latest research on EBV, etc.
The reason I am suggesting the Co Cure list is to help ensure that you don't have to see 30 or more doctors like I did to try to find a diagnosis. I am not sure where you live, but a good example of one of these alternative clinics is the Fibromyalgia and Fatigue Center. They have clinics in about 8 cities across the US. Definitely look up the co cure list, though.
Hi again, not sure if you've had your appt. with the infectious disease specialist yet, but I was looking back at this topic, and I saw that you're from MI. Depending on where you are in MI, this may or may not be helpful. The infectious disease specialist I went to is Dr. Luis Jauregui in Toledo; I had heard a lot about him from relatives who work in the medical field; he's highly recommended. So again, not sure if that helps or not, but I thought I'd at least mention it. Take care!
Awesome, I'll look into it. I did have my appointment with her, and she didn't have much to say to me that hadn't already been said. Question: If EBV was the cause of all this sickness, when I get sick as I have been (which I am right now), would I test positive for IgM mono antibodies every time?
I just want to jump in here and say that what everyone else is telling you is right on. and an infectious disease doctor will not necessarily help you. You should google the doctors like they said and see if there is one in your area. I haven't been able to find one yet and my primary doctor does not understand EBV like she should. I am finding that I am doing my own research. Hope you can find a good doctor.
You are very lucky to be living in MI. You are in the same state as the world's # 1 specialist for EBV-related CFS: Dr. A. Martin Lerner. He has 25 yrs experience at treating this.
Other doctors, including doctors at Stanford and in NYC, are now adopting his methods for treating CFS (post viral fatigue). He has figured out something that most patients already suspected: the virus is still ACTIVE.
I have been sick with this since 1992 but just started treatment with antivirals about 2 yrs ago. I am better but because I waited so long, it will take years to get really well The longer you wait, the worse it is.
I was reading this forum and wanted to see if anyone had some other symptoms as well as the ones described. My episodes tend to come and go, but never really go away completely. I am 34 and have always had an active lifestyle. About 7 months ago I started to see the symptoms. I had back and neck pain (when I would sneeze I’d almost fall on the ground in pain), fatigue, sores on my lips, tongue and in my mouth. I am also braking out on my trunk/neck with boil/pimple like bumps that secrete a green/yellow puss. I've seen an internal medicine doctor that took blood tests that showed an increase level in EBV and Parvo Virus, but both he and ID doctor I've seen didn't think that I had mono. I might have had it awhile back, but didn't think this was what was ailing me. The episodes seem to last about 3-5 days then tends to go away for the most part, then comes back. The duration in-between episodes seem to be shorting. Can anyone help me??? I am so frustrated!
Hello, I've had just about the same problems. I am currently 8 months in to my sickness. I'm having constant nausea and extreme fatigue. I was diagnosed with EBV back in elementary school and that was the biggest flair up I've had my whole life until now. I got so sick I got Bronchitis and had to get my tonsils and adenoids (adenoids) removed. I am a 36 year old male. I used to work out everyday and weighed in at 160lbs of solid lean muscle 7% body fat. Since then I've lost 15lbs. Most of it is because of loss of appetite due to nausea. I was around 3,000 calories, I'm currently at about 1,700 calories. I have swelling on the lower left back jaw and my salivary gland feels inflamed. I have been to my general doctor to get blood work, which came back normal. He sent me to get a MRI and to a Neurologist to get an eeg and an emg which both came back normal. Next I went to and ears nose and throat doctor and around the same time I also went to the dentist to make sure it wasn't my teeth that was the problem. The MRI came back normal and the dentist said my teeth were not the cause. I'm not ruling anything out right now. I have implants in my bottom jaw in the front that are screws, I got that done 7 years ago. But I'm not sure if that's the cause. Both of my bottom wisdom teeth are impacted and if I were to get them removed it could cause a numb jaw if I were to get them removed. I am going to get checked for EBV soon, now that I am older. I am also considering getting tested for MS.
Hello, I've had just about the same problems. I am currently 8 months in to my sickness. I was diagnosed with EBV back in elementary school and that was the biggest flair up I've had my whole life until now. I got so sick I got Bronchitis and had to get my tonsils and adenoids (adenoids) removed. I am a 36 year old male. I used to work out everyday and weighed in at 160lbs of solid lean muscle 7% body fat. Since then I've lost 15lbs. Most of it is because of loss of appetite due to nausea. I was around 3,000 calories, I'm currently at about 1,700 calories. I have swelling on the lower left back jaw and my salivary gland feels inflamed. I have been to my general doctor to
get blood work, which came back normal. He sent me to get a MRI and to a Neurologist to get an eeg and an emg which both came back normal. Next I went to and ears nose and throat doctor and around the same time I also went to the dentist to make sure it wasn't my teeth that was the problem. The MRI came back normal and the dentist said my teeth were not the cause. I'm not ruling anything out right now. I have implants in my bottom jaw in the front that are screws, I got that done 7 years ago. But I'm not sure if that's the cause. Both of my bottom wisdom teeth are impacted and if I were to get them removed it could cause a numb jaw if I were to get them removed. I am going to get checked for EBV soon, now that I am older. I am also considering getting tested for MS.
Smoldering EBV usually shows as 'negative' in tests unless they give you the actual viral load count. Positive just means you have Mono, which is Stage 2 of an EBV infection (sore throat with awollen lymph nodes is Stage 1).
The late Dr. Martin Lerner's protocol is what everyone is using today, along with eating a lot of phytonutrients (berries, etc.) and superfoods to build up the immine system.
Rashes inside (colitis) and out (shingles) are another virus the lurks dormant for years like EBV.
Important thing is to not let doctors give you antibiotics, cortisone, or immunosuppressents for a viral infection; they just make it worse after a few weeks.
That sounds like infected bone around one of your teeth...the infection can travel in the lymph and spread.
One study of over 100 women with breast cancer found 97% had a root canal on the same side in the past 3 years. The other 3% had similar dental work, so it came to 100%.
People with EBV/CFS are known to gain an average of 32 lbs., due to the hypothyroidism aspect.
Your chronic infection can lead to a weakened immune system and CFS.
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