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When Will EBV Symptoms Improve???????
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When Will EBV Symptoms Improve???????

In January, 2010 I was diagnosed with mono and pneumonia and was off work almost the entire month of January.  At that time, I was under a lot of stress as I was working full time at a very stressful job and going to school full time finishing up my degree.  I got over it somewhat but in September, 2011, I became ill with the same type symptoms and my doctor did tests which confirmed reactivation of the EBV.  Additionally, I have pneumonia and was hospitalized for a few days for that.  While the pneumonia symptoms are some better, I am still battling the EBV symptoms.  I have not worked at my stressful job since September 23 and am trying to recover via rest, eating healthy, taking my meds (still taking breathing treatments, Singulair, and Advair) and am taking a daily multi-vitamin.  One day I will think I am feeling pretty good and before the end of the day, I'm just feeling so awful again.  The sweats and chills, headaches, the total exhaustion, and the general unwell feeling is about to get the best of me.  Can anyone tell me when this will get better?  I return to my doctor weekly to check my progress and she is going to order more labs this week to rule out lymphomas.   She has taken me off work for 6 weeks.  I will admit that patience is not my strongest point, but I am so frustrated and so tired of feeling so bad all the time and don't know what to do to make myself better.  I am hoping that some of you will have some suggestions.  Thanks so much.
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24 Comments Post a Comment
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Avatar_m_tn
get tested for babesia, Bartonella, and Lymes disease.   The Western blot is useless if the bacteria is in the tissues, not the bloodstream.  PLUS, the immune system is so overwhelmed, it dosent know what antibodies to make since the surface proteins are changing so often.  Listen to my advice, I'm not a Dr but I have been through what you have and am getting better.

  Also, get a HHV6    IFA test for antibodies and a CD57.   HHV6 virus reactivates when you are immunosuppressed and causes MS like symptoms.  A CD 57 test looks at your immune system.  If it shows anything under 60, you have a good chance at having Lymes and coinfections of HGE, Babesia, Bartonella or all 4 at one time.  These are INTRACELLULAR bacteria and WILL NOT show up on standard blood testing.  

  Do you retch/throw up occasionally?  chronic headaches?  eye pain?  sore feet/ ankles?  stabbing sensations? bowell issues?  sleep issues?  sometimes feel like you cannot get enough AIR?
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Avatar_n_tn
I've had headaches my entire life (migraines).  This has been an extremely stressful year.  Between myself, my husband and my sone (who at age 36 sufferred a heart attack in June), we have had 7 hospital encounters.  My job is very, very stressful and that does contribute to my wellbeing somewhat.  I do not have eye pain, sore feet/ankles, stabbing sensations.  I've had bowel issues since this mono/pneumonia began.  I go to the bathroom several times a day.  As for problems getting enough air, that has existed only since the monopneumonia and is better now than it was.  If I feel somewhat better one day, you can bet the next day I feel awful.  During the night, I am constantly battling hot flushes followed by cold.  It's just maddening!  I've always been able to fall asleep pretty much as soon as my head hits the pillow, until all this happened.  Now, I have trouble going to sleep and if I wake up to go to the bathroom a zillion times per night, then I have trouble getting back to sleep.  If I am up and about and just try to do a few simple things, like vacuum the floor, etc. I am so exausted and feel just awful within a couple of hours.  I am diabetic and also hypothyroid.  Here are the numbers from the labs that were done on 9/28/11:  EBVirus Anti-VCA Igm: IGM result was <10.0; EB Virus Anti VCA IgG - IgG Result: 225 H; Anti-EBV Early Antigen Result: <5.0; EB Virus Nuclear AG, IgG - EBNA Result 161 H.  I'm sorry, but I don't know what all that means, but my physician said the 161 number was significant and shows that the EBV is reactivated, and she explained that this is why I feel so awful.  My family is very worried about me because I've always been a very active person and been able to juggle many tasks without difficulty.  I am sure my employer is not happy about my absence from work, but honestly, I don't think I could get through half a day right now.  How did you get through all this and when did you begin to feel some improvement?  Did you have the constant sweats, chills, etc?  Thanks so much for your reply.
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Avatar_m_tn
I went through the same thing but my reactivation was the HHV6 virus (human herpes 6, we all get it around age 2-3)  Go to www immed org and look under autoimmune illnesses.  Also go to HHV6Foundation.  Research indfo there on immunosuppression.  Also go to Columbia University/Lymes and they have a FANTASTIC section on Lymes and coinfections which sounds like you to a tee.  No standard medical doctor is gonna figure this out, much less treat you.  You need to contact ILADS to find a dr near you that knows how to test you properly and treat your chronic intracellular bacterial infections that have caused your immune system to "go over the edge".  

Diabetes and Hypothyroid are hallmarks of these infections.  I see it every day.
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Avatar_m_tn
BTW, the symptoms appear to be Babesia and Lymes, but you need to see an ILADS Dr nonetheless.
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Avatar_n_tn
Would I not have had the rash that is common with a tick bite?  I never saw a rash?  (Sorry if these are stupid questions).
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Avatar_m_tn
rashes in only 60-80% or so the CDC says.  The Lymes doctors have shown not only ticks, but biting flies, mosquitoes, fleas and even sexual contact can pass the bacteria.  THE CDC says "no" but you research it and there are TOO many accounts of spouses getting ill w/ same symptoms.  Go to Youtube and search Dr Lida Mattman.  She did a autoimmune video at a conference.  very informative.  Also, if you can find the movie "Under Our Skin" watch it.  It is about Lymes and all the controversiy.  People are being lied too.  Some Doctors feel Lymes and the coinfections of Babesia and Bartonella are the next silent killers.  And standard doctors have no clue.  All they give you ispainkillers and Bennies.  You need to treat the ROOT cause.  Reduce inflamation (inflammation), kill the bacteria causing it, boost your immune system. and let the reactivated viruses get suppressed by the now healthy immune system.  

  BTW, NO question is a stupid question.  The only stupid question is the one un-asked.  If here to help if you need me.
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Avatar_m_tn
The symptoms DO NOT appear to be Babesia and Lyme to me..Sounds like your doctor got the right diagnosis.  I'm not sure why ewford wants you to spend money on an ILADS, they actually don't exist..Many have lost their medical licence to practice because they also run around telling everyone they have Lyme.
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Avatar_m_tn
You are a known troll that denies that Lyme and coinfections exist.  The jokes on you apearently.  and you are incorrect about the liscense issue.  The insurance companies petition the boards to sanction them BECAUSE the don't like paying for long term treatment.  9 of the 14 IDSA members get paid to write insurance guidelines AND they hold patents on Lyme bacteria (that they are trying to develop a vaccine for, and have been)  The first vaccine actually GAVE them Lyme disease.  It has been proven around the world chronic Lyme disease exists and it needs to be looked at by every doctor as a possibility when there are so many symptoms.  It infects you just like Syphillis (syphilis).  Her symptoms are EXACTLY like Lyme and coinfections.  Check out Columbia University/Lymes and you will be proven incorrect, as you always are.
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Avatar_f_tn
"known troll"  hee hee.  that's funny.
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Avatar_m_tn
If I'm a known troll why do the Doctors at John Hopkins agree with me? You can go right to their website right now, and they have a little section that says almost exactly what I said.  Oh, are they trolls too?
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Avatar_m_tn
  Johns Hopkins doctors know little to nothing of Mycoplasmas.  I have known many that have gone there and been tested for Mycos using PCR testing on their Leukocytes.  Does Johns Hopkins do this?  NO.  They don't.  Does JH accept that the Borrelia Burgdeferi bacteria changes surface antigens continuously?  No they don't.  And yet THAT has been proven as well.  The reason the WB test is pathetic is that very rarely will you test positive since the surface proteins change, causing the antibodies, if your immune system can muster them, to not know how to attack this pleomorphic bacteria.

  Your doctors at JH receive $$ for lymes research.  What have they discovered?  nothing.  There is no incentive for them to.  They get a regular paycheck from Pharma companies to NOT discover anything.  Pharma makes their $$ of of pain modulation, not cures.  

Sporquie, for every one of you , there are hundreds of me that will call your bluff and missinformation.  More current research is being done around the word EXCLUDING Mayo, Yale, John Hopkins, NIH.  This SHARED info is being corraborated by worldwide scientists, while your "high and mighty" institutions are denying Lyme sufferers and Gulf War soldiers for the sake of $$.  They are a disgrace. When it is KNOWN intraveneous Rocephin cures ALS, and there is a good chance ALS is caused by Mycos and Borrelia, and that the US goverment does not want the populace taking long term ABX for the sake of drug companies making Billions of of symptom relievers.
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Avatar_m_tn
Ya, excluding all the best Hospitals in our country.  Nice try :o   I'll let your comment speak for itself.
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Avatar_m_tn
Uh Yeah....  How come the BEST HOSPITALS IN THE WORLD cannot diagnose a intracellular bacterial infection coupled with a suppressed immune system leading to a unsuppressed viral infection overload that causes the macrophages to not be able to kill off fungal infections.    How come Walter Reed doctors cannot find the cause of Gulf War illness.  Because they don't know what to look for. "Your" doctors think Mycoplasmas are hospital infections.  
  THE  leading cellular pathologist, Chair position, at the Anderson Cancer Research Facility (MD ANDERSON, you probably haven't heard of it) says I am correct.  He was a Nobel Nominee, 3 World Renown Citation Classic papers, over 600 peer reviewed and accepted papers, sits on numerous medical journals, won numerous awards including Burroughs Welcome Award in cellular pathology, edits medical texts books, discoverer of Gulf War Illness, and treatment therof, etc.  HE told me how to get tested, what to test for, and what to expect.  I'll let my comment speak for itself.  You are the one being missled.  I had all the above symptoms you deny, I now am on the way to recovery.   You continue to get worse Sporkie, I am getting cured.
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Avatar_m_tn
BTW, do some research on ALS and ABX.  Not spouting off the NIH and hospitals BS.  The people that are ACTUALLY researching this.
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Avatar_m_tn
Also, since Mycoplasmas are coinfection of Lyme patients, research Mycoplasma/ Leukemia, Mycoplasma/ ALS, Mycoplasma/MS, and Mycoplasma/Lymes disease.  Hope to hear your educated response soon!
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650547_tn?1271776798
Hi, sorry for the shouting/namecalling match going on here... some people (despite their good intentions) forget why people (including themselves) are on here... and it's really not to argue!  Anyway, your symptoms really fit the bill for any of the sicknesses/diseases mentioned above; however, seeing as your EBV titer results show a re-activation (And be very glad your doctor actually can interpret that; most can't!), I would say that's what it is.  Complicating the matter is the fact that you also had pneumonia, along with all the stress you've been experiencing in your life.  Unfortunately, other sicknesses and stress (both emotional and physical) are 2 of the most important factors in EBV re-activation!  So I don't want to say ewford is wrong; anything is possible (and if it would make you feel better to rule out Lyme, etc., then by all means go ahead and get tested).  However, in this situation, everything is pointing VERY much in the direction of an EBV re-activation, coupled with any lingering health issues you may have already been dealing with.  My advice would be to put your life on "hold" (As much as possible, and I know it's not easy!) and let your body fight off the EBV, so that it/you can start tackling the other issues.  If you can do things one at a time, that's a good way to go.  Hope this has helped, and please keep us updated; and get well soon!
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650547_tn?1271776798
By the way, I had to take off work full-time (Used up all my sick and vacation time, and even went into unpaid FMLA!), and then once I started feeling better, I SLOWLY increased my workload.  You can do this!  The key is to take things very slowly, and I think you'll start seeing things improve.  Best wishes!
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Avatar_m_tn
  Unfortunately with a chronic infection thats intracellular, there are ALOT of viruses that get reactivated that are normally supressed.  Dodgefan, I'm sorry if it appeared that I was fighting w/ Sporke.  It's just he must work for the CDC, as he spouts the same thing .  All the above symptoms fit the criteria since it affects the body systemically.  Lyme tests are terrible.  Bacteria changes shape causes immune system to not be able to find right antibody or fighting response, etc.  
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Avatar_f_tn
This really took my mind off my health issues for a bit the both of you going back and forth and you calling the other person a "troll" funny but not nice!  If you all got anything accomplished with that is to make me laugh! thanks :D I had a question for you ewford~ the cd57 test I thought that was to check if you had lymes not how your immune system was responding? I had another question is it common to get dizzier and have your symptoms get worse when you are taking the medicines? ttys
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Avatar_m_tn
Well, in my opinion Sporque is less informed than he should be, and tows the party line of "thats not Lyme"  when indeed it probably very well is.  Or a Mycoplasma.

  No, the CD57 test looks to see how your immune system is functioning.  Lyme, AIDS, and other immune suppressing borrelia/bacteria(Mycoplasmas) will show a low CD57.  It is just a marker test, not definative but usefull.

  As far as symptoms getting worse/dizzier...YES!  It's called a Herxheimer response.  It is from the ABX killling off the bacteria and the ytokines and dead cells and toxins being released into your bloodstream.
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Avatar_m_tn
*cytokines not ytokines
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Avatar_m_tn
To ewford and all,

It seems like there are some informed folks in here, so I'd like to throw out my symptoms to the group.

The second week of October I got sick right when I got to China.  I was nauseous (no vomiting), no appetite, lightheaded (no dizziness), and very fatigued.  It felt like I could barely function.  It took weeks to get over this, but then I just felt fatigued.  The first half of November I still felt fatigued.  The last week of November I had relapse of my China symptoms.  It would just hit me like a train.  Nausea, barely concentrate, felt horrible.  I would need to lay down and let it pass.  By this time a light jog would make me feel even worse.  

All my blood tests were coming back normal.  I had chest xrays, EKG, EEG, brain and neck scans.  All normal.  Finally someone tested for EBV.  My EB anti VCA IGG is 149.  My EB virus nuclear antigen IGG is > 600.  This is my only clue so far.

I am on some antibiotics now which make me sick so hard to tell if I am improving.  Feel extremely tired as I write this at 8:47pm.  My new doctor seems very sharp, but is there more that he should be checking.  I am now close to 3 months of experiencing this and have not felt 100% in that time.

Thanks for any input.
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416318_tn?1358208615
Hey. I liked your response.
I was just diagnosed w EBV from bloodwork.
Bu i cant seem to get answers from internet about possible
symptoms

I see the original poster mentioned feeling very ill.  
Can anyone elaborate on this. Im new to this and just want to understand.

I will be working stressful hours for a few months starting next week. I already have to lay down midday from just doing simple housework. And i get ill like nausea and my bronchial tubes feel like theyre closing. If i dont lay down quick then i get tremors.

Anyone else????

Ive already had chest xray ruling out infection. And thyroid is good.

And i also was informally diagnosed w costrochondtitis last week. Which is inflammation of cartilage surrounding ribs.

Any response is appreciated as im not familiar w EBV at all

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Avatar_m_tn
My typical EBV sypmtoms were fatigue, nausea, and lack of appetite.  Just generally not feeling well.  My severe symptoms would cause this weird lightheadedness (no dizziness), lack of appetite and a run down feeling.  When that happened I would just have to lay in bed for a couple hours.  It would interfere with work and life in general.  I was misdiagnosed in the beginning, so I kept working out (made me feel even worse in the end) and would feel really fatigued.  It is frustrating b/c you have no control over this.  I would feel ok and then suddenly feel crappy.

I am 3+ months into this and it is finally getting better but not fully.  I highly recommend a lot of rest (no workouts, go to bed early).  I used to work out 3 times a week and am just now starting to do light workouts.  

I have had so many test, scans, etc.  If I had just been told in the beginning, I think I could have avoided a lot of this.
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