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Reactivated EBV results
My recurring symptoms started up back in February. Over the course of the last few months, I've had a multitude of symptoms: Palpitations, abdominal pain, back pain, numbness/tingling in legs/feet, burning in the feet, chest pain, joint pain, muscle pain, fatigue, low-grade headaches, indigestion, night sweats (but not very many of them and not for awhile now), chills, hot flashes, frequent urination, conjunctivitis, ringing ears, and painful testicles. So basically, I feel whatever I have courses through my body because my symptoms change from week to week. Some days I feel like I'm recovering and then the next day I'm dragging. Or sometimes it works in half-day intervals.
Pretty much all of my testing has come back negative: gobs and gobs of blood work, CT of chest and abdomen, head MRI, EMG of major leg nerves, echocardiogram, heart cath, chest x-ray, lumbar spine x-ray, holter monitor, urine tests, ultrasound on thyroid, and upper GI.
Findings, not much: low potassium (briefly), low vitamin D, moderate acid reflux, mild gastritis in stomach, small kidney cysts. Some numbers on my bloodwork at times were a little out of range, but most of my CBC's have been within range.
The one item that has stood out is my EBV test results. The antibody testing shows that I contracted EBV a long time ago, but all of the current antibodies has high titers.
Pretty much all of my testing has come back negative: gobs and gobs of blood work, CT of chest and abdomen, head MRI, EMG of major leg nerves, echocardiogram, heart cath, chest x-ray, lumbar spine x-ray, holter monitor, urine tests, ultrasound on thyroid, and upper GI.
Findings, not much: low potassium (briefly), low vitamin D, moderate acid reflux, mild gastritis in stomach, small kidney cysts. Some numbers on my bloodwork at times were a little out of range, but most of my CBC's have been within range.
The one item that has stood out is my EBV test results. The antibody testing shows that I contracted EBV a long time ago, but all of the current antibodies has high titers.
I've read that. What I also think is very interesting is how many of these autoimmune syndromes (Sjogrens --- Guillian Barre) are all believed to be triggered by a viral or bacterial infection. I know the flu shot and/or the flu is suspected with Guillian Barre Syndrome. In addition to all of that... I've read that viruses could be the trigger for Hogkin's Lymphoma. I know my friend who had Hogkin's was ill with cold symptoms months before she was diagnosed. Interesting though, isn't it ?
1 Comments
Hi PlateletGal, I am new to this forum and you seem to have quite a bit of knowledge on the EBV front. I thought you and the others might be interested in my story. When I was in my early 30's I became ill with a sinus infection, that just wouldn't go away. A trip to the Medac center revealed I had Mono. I was told to go home and do nothing but rest. I'm certainly glad I did not follow that advice as I would be dead today. Within two days I was in the hospital diagnosed with Guillian Barre' Syndrome, unable to walk and rapidly declining in my ability to breath. To make a long story - short, I was in Duke Hospital for 8 weeks before my condition started to level off and improve. They then moved me to my local hospital in my hometown for rehab where I resided for another 6 weeks. Recovering from that illness took me a couple of years, as my nervous system was really wrecked. That was 30 years ago.
Since then I have had periods of time, a year here and a year there, with debilitating fatigue and pain and finally was diagnosed about 5 years after the GBS with a reactivation of the EB Virus. I only got that diagnosis from my GP after I told my him I refused to take Anti-depressants until he ran all the test he could on me to find out what was wrong. His comment was, "There is only one test we have not done, but you are not in the age group for that illness." It turned out he was referencing Mono / EBV. He came back with an apology and a diagnosis of Reactivation of EBV. I'm certain I had the virus all along and just did not know it. I also had developed Hypothyroidism during the years just prior to this diagnosis, which I'm sure was skewing what they were looking for.
I would encourage everyone who is suffering with this virus, to be persistent with your Doctor, and change DRs. immediately if they dismiss your condition!! I was then referred to an infectious disease specialist, who plainly told me he could not help me. I finally ended up in a bookstore and found a book by Dr. Jesse Stoff titled Chronic Fatigue Syndrome / AKA Epstein Barre Virus. (I think you can still get this book on Amazon) He is a holistic Dr. that studied in England and had a protocol to treat it with supplements and food, and I devoured that book. I did exactly what he said, with my eating habits, food choices natural supplements and all. Within 4 months I was back on my feet again and stayed that way for many years. I did have residual nerve damage from the Guillian Barre' and had to take great care in my routine of rest when needed along with the supplements and diet.
However, I also let my guard down, after several years of feeling good, and was under great stress in 2010 - 2015. Our family went through huge loses during that period of time and I let up on watching my diet, taking all of my supplements, and was working hard as well as trying to manage the care of my Mother-In-Law, who had developed dementia. I started noticing severe joint pain and recurring illnesses, bronchitis etc. Finally in 2016 I mentioned to my GP that this reminded me of a time in my past when I had a reactivation of the EB Virus, and could not get well. They did an EBV panel and sure enough it was back in full force. Unfortunately, my GP did not know how to treat it, so I immediately changed Drs. I am now under a practice that has an Integrative and Wellness approach and believes they can bring my numbers back down again. (Look for a Dr. of Integrative Medicine, they seem to have a more open mind to helping you.) I am being tested regularly, and I'm fighting to get my health back once again.
Yes, Guillian Barre' is definitely caused by EBV, and so are several Cancers. At 66 yrs old now, I am working hard to keep them all from knocking on my door. I've learned from my long history with this virus, you MUST keep your diet, rest and supplementation at the forefront of your mind. Let your guard down and you will pay dearly. It's easy to think when you are feeling well, "Oh I've beat this thing, I can relax" But don't be fooled, always be alert, and don't feel guilty for pampering yourself either. YOU need it to survive. You can treat it, like you said, being good to yourself is part of that treatment. Search for that Doctor that is an Ally who understands the disease, and I wish you all the best in your battle.
Thanks for letting me share,
K. Sanders
Since then I have had periods of time, a year here and a year there, with debilitating fatigue and pain and finally was diagnosed about 5 years after the GBS with a reactivation of the EB Virus. I only got that diagnosis from my GP after I told my him I refused to take Anti-depressants until he ran all the test he could on me to find out what was wrong. His comment was, "There is only one test we have not done, but you are not in the age group for that illness." It turned out he was referencing Mono / EBV. He came back with an apology and a diagnosis of Reactivation of EBV. I'm certain I had the virus all along and just did not know it. I also had developed Hypothyroidism during the years just prior to this diagnosis, which I'm sure was skewing what they were looking for.
I would encourage everyone who is suffering with this virus, to be persistent with your Doctor, and change DRs. immediately if they dismiss your condition!! I was then referred to an infectious disease specialist, who plainly told me he could not help me. I finally ended up in a bookstore and found a book by Dr. Jesse Stoff titled Chronic Fatigue Syndrome / AKA Epstein Barre Virus. (I think you can still get this book on Amazon) He is a holistic Dr. that studied in England and had a protocol to treat it with supplements and food, and I devoured that book. I did exactly what he said, with my eating habits, food choices natural supplements and all. Within 4 months I was back on my feet again and stayed that way for many years. I did have residual nerve damage from the Guillian Barre' and had to take great care in my routine of rest when needed along with the supplements and diet.
However, I also let my guard down, after several years of feeling good, and was under great stress in 2010 - 2015. Our family went through huge loses during that period of time and I let up on watching my diet, taking all of my supplements, and was working hard as well as trying to manage the care of my Mother-In-Law, who had developed dementia. I started noticing severe joint pain and recurring illnesses, bronchitis etc. Finally in 2016 I mentioned to my GP that this reminded me of a time in my past when I had a reactivation of the EB Virus, and could not get well. They did an EBV panel and sure enough it was back in full force. Unfortunately, my GP did not know how to treat it, so I immediately changed Drs. I am now under a practice that has an Integrative and Wellness approach and believes they can bring my numbers back down again. (Look for a Dr. of Integrative Medicine, they seem to have a more open mind to helping you.) I am being tested regularly, and I'm fighting to get my health back once again.
Yes, Guillian Barre' is definitely caused by EBV, and so are several Cancers. At 66 yrs old now, I am working hard to keep them all from knocking on my door. I've learned from my long history with this virus, you MUST keep your diet, rest and supplementation at the forefront of your mind. Let your guard down and you will pay dearly. It's easy to think when you are feeling well, "Oh I've beat this thing, I can relax" But don't be fooled, always be alert, and don't feel guilty for pampering yourself either. YOU need it to survive. You can treat it, like you said, being good to yourself is part of that treatment. Search for that Doctor that is an Ally who understands the disease, and I wish you all the best in your battle.
Thanks for letting me share,
K. Sanders
Read from Fatigue to Fantastic. Take Pro boost & D-Ribose. I was sick for 8 months in 2010. I take the Ribose everyday & I have been good for 12 years now.
I had a severe case of mono over 25 years ago, and have never recovered. It left me with CFS and many other weird symptoms. This illness is brutal, and needs more research. I don't know if its the mono reactivating, or if the original illness did some sort of permanent damage to the body.
1 Comments
Candy man what are your symptoms? How long do they last? Have u had flare ups? Are u still having trouble?
I have recently been told my EBV has reactivated. I suffered with EBV/CFS 25 years ago but did recover very nicely. I was treated by Dr. Susan Levine, in NYC. She is wonderful, and is an expert in this field. I will be going back to her to see if she can help me again. The dr who tested me and said it has reactivated put me on antiviral Valtrex, and I feel worse. My leg pain is awful along with my glands and now I've started to have gum pain. Has anyone else had this?
3 Comments
I also have high EBV and mono since Feb, 2016. I have been on Valacyclovir for two weeks, It seems to be helping. 1000mg 3 times a day.
I have been suffering from CFS/chronic mono for over two years. It has been absolutely incapacitating at times. At one point neurologists thought it may be MS. Many doctors, many tests, all results negative. Symptoms come and go, BUT there is hope. One thing that was revealed about 4 months ago was very high titers for both EBV and HHV6 (herpes 6). There is a known relationship between these two viruses and CFS. Do an Internet search for Dr. Martin Lerner and also Dr. Jose Montoya. They have had success treating this combo with antiviral meds. Unfortunately, Dr. Lerner passed away back in October, but his treatment guidelines are still on his website and my doctor has been using it as a treatment reference. I have been on Acyclovir for almost four months and I have seen a good deal of improvement. I still have a ways to go, but there's no doubt the Acyclovir has been helping. Do yourself a favor and get bloodwork for EBV, HHV6 and CMV titers. If u find a combination of high viral titers, perhaps u may benefit from antiviral meds. Good luck, it's a long miserable road.
Has anyone on this thread had b-12 levels checked? Many of these symptoms plagued me for about three years. Finally I found Facebook support group Pernicious Anemia/B-12 Deficiency, had my b-12 tested, and it was the first test that came back normal. Turns out I have macrocytic anemia due to low b-12. I'm now on day 73 of self injecting hydroxocobalamin, taking 5600 mcg methyl folate, vit d3, K2, magnesium, and potassium-rich foods. I have my life back after spending Jan/Feb 2016 in bed.
Firstly, I'm so glad I found this post! I contracted EBV (glandular fever) at age 6 (1990) and suffered chronic fatigue and swollen glands for months. I was undiagnosed for a long time as I was "too young" to get the kissing disease. I remember having numerous blood test and seeing numerous doctors. I have since been told by doctors here in my area that once you've had EBV, that's it, you don't get it again. My doctor didn't believe in flare ups or re-occurrences, but I believe I can recall at least 5 significant flare-ups in my life and am currently experiencing one now. With two children, 3yrs and nearly 12 months, I am finding it extremely hard to re-build myself. I don't even know what to write due to the brain fog and the fatigue is unbearable. I'm seeing an acupuncturist tomorrow and am crossing my fingers that I get at least some relief (he has treated my mum who has Lyme disease very effectively)
I have had Epstein Barr for many many years in combination with an H. Pylori infection. This combination has been shown in at least one study to cause severe gastritis. That was definitely the case with me. Also, I experienced what I thought was lyme disease like symptoms, similar to the ones referred to in the above comments. This included joint pains, severe back pain that recurred for no particular reason, debilitating brain fog and lethargy, hemorrhoids, eye issues, strange white patches on my tongue, sleep problems, etc.
A device called the "doug coil", uses resonant frequencies to destroy this pathogen. It is very simple in construction and because it is open source, plans can be found on the internet very easily. To be concise, it is a stereo amplifier which drives a homemade coil of wire to produce an alternating magnetic field. A bank of capacitors is used to tune the coil and a computer can be used to feed the frequency to the stereo which drives the coil.
I built one of these devices myself from parts purchased on ebay for about $400. It was worth every penny. I originally thought I had Lyme disease, and noticed how many glowing reviews the device had in the lyme forums. Many people said that it gave them their lives back. I fully agree with this assessment. I was literally at the end of my rope hoping I would just die of this nonsense and be done with it.
There are a couple of videos on youtube which demonstrate what properly tuned magnetic fields do to microorganisms (it is sometimes called "rife" therapy also). They will spin and sometimes spontaneously explode. Unfortunately, it took me almost a year of experimenting to find the frequencies that benefited me the most. This is not a blanket therapy, but when it works well, it works very wonderfully. I have my energy back, I can actually function again. It has helped with my eye issues and joint pains. I am definitely pleased with the results. I can resolve any back pain that comes on in 1-2 days instead of weeks.
A guide called the "CAFL" can be located online which is a published list of frequencies that other people have had good luck with. I highly recommend using this as a starting point. Many of these frequencies do work as advertised. I also had a 15 year festering staph infection that antibiotics could not eradicate. 1 month of treatment with high intensity magnetic therapy with some of the published CAFL frequencies stopped the infection and keeps it away.
Like I said, it's not a magic bullet, but it can definitely make you functional again and relieve lots of pain. Persistent experimentation is key. Keep a log book of frequencies used and reactions. EBV is actually somewhat delicate, so when I found the correct frequency, I experienced a massive "die off" reaction. This occurs when your immune system is overwhelmed by the sudden appearance of debris which was otherwise hidden to it. Be prepared for EXTREME depression. This bug is very psychologically manipulative. But with continued treatment, you will be feeling MUCH MUCH better! BTW, I've found that power output is very important. The original inventor "doug" recommended 2000watts. I have been using 600 watts, but I feel I could get better results with more. I'm the happiest I've been in years and without spending thousands of dollars in poison medications or doctors bills. Good luck to all of you! :-)
A device called the "doug coil", uses resonant frequencies to destroy this pathogen. It is very simple in construction and because it is open source, plans can be found on the internet very easily. To be concise, it is a stereo amplifier which drives a homemade coil of wire to produce an alternating magnetic field. A bank of capacitors is used to tune the coil and a computer can be used to feed the frequency to the stereo which drives the coil.
I built one of these devices myself from parts purchased on ebay for about $400. It was worth every penny. I originally thought I had Lyme disease, and noticed how many glowing reviews the device had in the lyme forums. Many people said that it gave them their lives back. I fully agree with this assessment. I was literally at the end of my rope hoping I would just die of this nonsense and be done with it.
There are a couple of videos on youtube which demonstrate what properly tuned magnetic fields do to microorganisms (it is sometimes called "rife" therapy also). They will spin and sometimes spontaneously explode. Unfortunately, it took me almost a year of experimenting to find the frequencies that benefited me the most. This is not a blanket therapy, but when it works well, it works very wonderfully. I have my energy back, I can actually function again. It has helped with my eye issues and joint pains. I am definitely pleased with the results. I can resolve any back pain that comes on in 1-2 days instead of weeks.
A guide called the "CAFL" can be located online which is a published list of frequencies that other people have had good luck with. I highly recommend using this as a starting point. Many of these frequencies do work as advertised. I also had a 15 year festering staph infection that antibiotics could not eradicate. 1 month of treatment with high intensity magnetic therapy with some of the published CAFL frequencies stopped the infection and keeps it away.
Like I said, it's not a magic bullet, but it can definitely make you functional again and relieve lots of pain. Persistent experimentation is key. Keep a log book of frequencies used and reactions. EBV is actually somewhat delicate, so when I found the correct frequency, I experienced a massive "die off" reaction. This occurs when your immune system is overwhelmed by the sudden appearance of debris which was otherwise hidden to it. Be prepared for EXTREME depression. This bug is very psychologically manipulative. But with continued treatment, you will be feeling MUCH MUCH better! BTW, I've found that power output is very important. The original inventor "doug" recommended 2000watts. I have been using 600 watts, but I feel I could get better results with more. I'm the happiest I've been in years and without spending thousands of dollars in poison medications or doctors bills. Good luck to all of you! :-)
Well I was diagnosed in my 20s with EBV and have reactivated EBV again at 51 for a total of 4 times since first diagnoses. So everything you listed is about right. Holistic Doctor is the best way to go. Mine helps with Vitamins Minerals and herbal combos and diet change. Stay away from acidic food like tomatoes as much as possible, red meats tend to irritate as does sugar and caffiene. Hang in there and yes the fatigue can be the pits. Do what you can when you can but never try to do a months worth in one day :) Take breaks between chores. Lots of fluids.
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I’m 40 and have had four flare ups since I was twenty after a nine month battle with mono. It’s super frustrating as a parent and active person with a full time time. This isn’t mental. Stress brought it on just like herpes 1 and 2. I’m on a month and a half thought I was getting better after a few weeks and went back into the gym and got worse? Any ideas /supplements? Normally work out fours days a week but going to the gym right now is not a good idea. Trying to listen to my body.
Well I was diagnosed in my 20s with EBV and have reactivated EBV again at 51 for a total of 4 times since first diagnoses. So everything you listed is about right. Holistic Doctor is the best way to go. Mine helps with Vitamins Minerals and herbal combos and diet change. Stay away from acidic food like tomatoes as much as possible, red meats tend to irritate as does sugar and caffiene. Hang in there and yes the fatigue can be the pits. Do what you can when you can but never try to do a months worth in one day :) Take breaks between chores. Lots of fluids.
I was wandering if you ever found anything in addition to the ebv out? I am experiencing the eact same thing right now. For two months. the chest pain, muscle twitches, fatigue, back and hip pain. I get really dizzy often. I aso have really cold hands and feet all the time! I have had all the blood work, head ct scan, mri of head and back. Only thing positive was a high reading >8.0 of ebv. I as well hope its all it is but cant help but worry its something the drs have missed and this is just the easy answer. I hope our feeling better. Thanks
Hello. I diagnosed myself with the EBV virus in July 2013 as my son had it three years prior. As you all mentioned, regular doctors are completely ignorant or stupid when it comes to the EPV virus. I woke up one morning and literally could not get out of bed, had a terrible sore throat, swollen glands and extreme fatigue. After a day of that my left arm got paralyzed. When I did go to the doctor, she sent me for x-rays and diagnosed as arthritis of the neck. Like you have a sore throat with arthritis. The only way she agreed to the EBV test if I agreed to the x-rays. My test results was 270! supposed to be 30 in a healthy person. Thank you for all your posting. It is a very depressing disease that you think you're very misunderstood. It has been a year and I thought something was wrong as my back was completely paralyzed, I couldn't turn my head , had horrible night sweats and a headache that won't go away. Dr. said it was a muscle spasm, sees those all the time, take those muscle relaxer and you'll leave. What a crock!
I've spoken to my OB/GYN who is a nurse practionner
I've spoken to my OB/GYN who is a nurse practionner
Hi Deb. I have Selak's book, and you're right, it IS great. Another good one I recently obtained (am almost done reading it) is "The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life" by Patricia A. Fennell. I have Fibro, evidence of an old exposure to EBV (and am now looking at that more closely), hypermobility syndrome which is now being re-evaluated as possibly Ehlers-Danlos Syndrome and so forth. I'm trying to find a relatively local (within 5 hours or so) geneticist to help with the EDS bit, but have decided to start with a rheumatologist a couple of hours from me who has a very good reputation. I'm really wondering how much, if at all, the EBV might have contributed to the firbo. Lyme tests have repeatedly come back negative despite having grown up in a high-incidence Lyme area. I still think that's what it might be, personally. (Oh, and I have Asperger's on top of everything, so my perspective is occasionally a bit unique. LOL) Cardiac issues, GI issues, Reynaud's, low-normal thyroid (which I think is too low for me), lots of other stuff too....
Becca
Becca
I have been tested for EBV and the labs came back that I have antiboties for EBV. For all that is battling this illness and CFS please seek out a Functional Medicine Doctor in your area. They deal with Fibro, CFS, Epstein Barr and all the other "invisible illnesses". A great resource is Dr Amy Myers in Austin, TX. Just google her name. She isa wealth of knowledge on these illnesses. I have even considered flying to TX from OH to see her. She requires one in office visit and from that point forward can do phone consultations and labs as well. She is the best doctor out there on these illnesses. She was on Dr Oz this week. She also has a podcast you can download and educate yourself about all these invisible illnesses. A great book to get is "You Don't Look Sick! Living Well With Invisible Chronic Illness". by Joy H Selak
Hi. I'm just stumbling across this site. I'm floored by everything, everyone is saying. I was diagnosed in May 2004. Both my spleen and liver are enlarged, I'm curious, what to do?! Any help, suggestions, I'm thankful for. I've never heard of CFS,but I didn't completely fail a sleep study, I woke up nearly 300 times, despite, only remembering a few times. Thanks. I know it's been years since the last posting. My hematologist discovered everything, as a heads up. Its a blood problem. Great place to start, if y'all haven't already been.
Hey I seen that you also have had reactivated EBV. I see you mention body aches and more symptoms. Do you care about sharing some or all of your symptoms? I also have a platoon of symptoms and haven't hear of anyone with a few of the symptoms I have.
I have had those debilitating fatigues, and it is like being in a fog, and it is not like normal tiredness, indescribible, and yes when you are trying to work and have a fast pace job, just horrible. It eventually passes, and I just wake up one morning and it is gone. And, most of the doctors don't take it serious, as soon as I mentioned it they said that just shows that you've had it before, but they didn't even look at it.But, my GYN did do the test and and said it definitely looked like I was having a reoccuring EBV and suggested I go to an infection disease specialist, but never got around to it, so have never found out. Guess I've said all this before (forget) anyway I do take Vyvanse which is a timed release stimulant, which I think is actually a new version of Atterall (sp?)which is timed released, and it definitely helps, there is also Provigil another drug they say helps. Vyvanse and Provigil is expensive but my insurance does pay pretty good and I get a coupon which makes it about $30.00, worth every penny. I also take Synthyroid, for hypo thyroid. I spent yrs trying to find out what these spells were, still don't know for sure, but haven't had a serious attack in a while, and it is usually after extra busy times, or stress. But, I don't work anymore and that helps. Good luck everybody, and maybe this is wrong but after being left out of every fun occasion because of this, I BELIEVE IN MEDICATION, now can have a life.
I've had the same symptoms as you man and more. I was diagnosed with EBV in the February of 2012 and this thing has took it's toll on me ever since. I had these crazy symptoms then all the up to August where it subsided. At the beginning of Dec. these symptoms came back a little stronger this time. And it's been going on ever since. More symptoms like pain in clavicles, and numbness/pain in armpits. Was wonder if you ott70 or anyone else experienced these two symptoms..
I am in NH. After close to 15 years of unexplained immune disorders, including temporary loss of my eyesight, mono at 35, clinical diagnosis of Lyme and 2 years of treatment for Lyme - I am now told that I have EBV with CFS. Of all the symptoms, the crushing fatigue is by far the worst and has had the most impact with trying to function at work and home. After years of antibiotics for Lyme, and antidepressants for being told this was all in my head, it is now suggested that I start on Ritalin or Concerta to offset the fatigue. Has anyone had luck going in that direction? I can't believe how conflicting the internet is when searching for info on EBV and CFS. The Dr told me blood test was indicative- Mayo clinic says there is no blood test. I am so tired and don't know where to turn. The days I feel "normal" I can count on one hand a year. Do the symptoms ever go away for good or is this just something I have to accept as my new normal? Any reliable resources for me to study would be appreciated.
I live in windsor, Ontario, Canada. I have a 17 year old son that has been sick since December 2011. After almost a year of making trips to our family doctor! many test, scans, (I had to request) a trip to see a specialist in Texas etc. In December of 2012 he was diagnosed with EBV and CMV. He has been under the care of a naturopath and a doctor of internal medicine. He was recently been put on a treatment of prednisone (6 week treatment) to try to suppress his immune system because it is attacking his body. (He has a lesion on his brain that is post viral). He is halfway through his medication and last Saturday seemed to be getting better, Thursday he started with the headaches coming back (not as severe) and today he has pain in around his liver area. I really don't know where to go next. My son has always been healthy.
I live in windsor, Ontario, Canada. I have a 17 year old son that has been sick since December 2011. After almost a year of making trips to our family doctor! many test, scans, (I had to request) a trip to see a specialist in Texas etc. In December of 2012 he was diagnosed with EBV and CMV. He has been under the care of a naturopath and a doctor of internal medicine. He was recently been put on a treatment of prednisone (6 week treatment) to try to suppress his immune system because it is attacking his body. (He has a lesion on his brain that is post viral). He is halfway through his medication and last Saturday seemed to be getting better, Thursday he started with the headaches coming back (not as severe) and today he has pain in around his liver area. I really don't know where to go next. My son has always been healthy.
I really sympathize with you so much. My test looked like I was re-actived also a long ago, never went to an infectious disease doctor but I just had a
really bad spell of pain all over, like lightning striking me all over burning like I was laying in a bed of coals, it was horrible!! It lasted about 3 wks. But, your symptoms sound like POTS which I think you mentioned and I've always had symptoms of Addisons myself, and having been researching my problems for yrs and finally settled on Ehlers-Danlos, or hypermobile joint syndrome, but POTs is one of the things that can go along with it, and I also think having both of these conditions it sets you up for these attacks one sets the other off or whatever, the chicken or the egg. But you should check out Dr. Dianna on you tube, her speaking POTs, mast cell, EDS. web site prettyill.com, or .org.Anyway, am rushing no telling how this is written so bare with me.
really bad spell of pain all over, like lightning striking me all over burning like I was laying in a bed of coals, it was horrible!! It lasted about 3 wks. But, your symptoms sound like POTS which I think you mentioned and I've always had symptoms of Addisons myself, and having been researching my problems for yrs and finally settled on Ehlers-Danlos, or hypermobile joint syndrome, but POTs is one of the things that can go along with it, and I also think having both of these conditions it sets you up for these attacks one sets the other off or whatever, the chicken or the egg. But you should check out Dr. Dianna on you tube, her speaking POTs, mast cell, EDS. web site prettyill.com, or .org.Anyway, am rushing no telling how this is written so bare with me.
My symptoms are similar to yours. Heart palpitations, extreme fatigue, anxiety, low stress tolerance, body aches, headache etc. I have many more symptoms but won't go on and on. I only found relief when I saw a naturopathic doctor. She ordered the correct blood tests on the first vist only after seeing about 5-6 M.D.'s with no relief. The blood test revealed a reactivation of EBV. A naturpathic doctor in your area might help! good luck!
My symptoms are similar to yours. Heart palpitations, extreme fatigue, anxiety, low stress tolerance, body aches, headache etc. I have many more symptoms but won't go on and on. I only found relief when I saw a naturopathic doctor. She ordered the correct blood tests on the first vist only after seeing about 5-6 M.D.'s with no relief. The blood test revealed a reactivation of EBV. A naturpathic doctor in your area might help! good luck!
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