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Long Term Chronic EBV
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Long Term Chronic EBV

Has anyone experienced long-term issue with elevated EBV numbers going up and down, but aways elevated numbers? Which, I think, is termed "chronic/active infection."

If so, how long did it last? Or, is lasting...
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pvn, you might try plategal,  I think this person has alot of info on EBV
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You're right...she is a wealth of information--and, generous with her time and efort in helping others!

Let us all know how your next Dr visit goes...you are certainly going thru a great deal!  I'm sure there is light at the end of the tunnel.
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Thanks Had AB CT this am,  Now just waiting for results,  In a way you hope it is EBV related and nothing else
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Thank you for the kind words. I actually can't answer the question because in my case, I wasn't diagnosed with CFS until my early 30's, although I know I had CFS since I was a teenager. I actually self-diagnosed myself years before my official diagnosis, but knew that there wasn't a treatment available, so I didn't bring up the subject with my PCP. What I did do back then was see alternative medicine practitioners and they treated my symptoms. The only EBV titer I had done was a couple of years ago and it was off the charts.

I do hope that the information I sent to both on viral reactivation was helpful. Unfortunately for those of us who have CFS, our bodies think we are still fighting an infection(s) long after the infection is gone. Of course this consumes our resources and destroys healthy cells and contributes to our overall feeling of exhaustion.

One thing you guys may want to try, especially if you need some ENERGY is Bragg's raw, unfiltered apple cider vinegar. I add a couple of Tablespoons to my drinking water every single day and it gives me an extra hours worth of energy. My mother and husband are now using it and they are now sharing the same results.
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I am new to this forum and am wondering if you can give me some advice.  I was diagnosed with mono april 07, three days before my 45th birthday and was out of work for 3 mos.  In Nov 07 the symptoms came back, not all of them, but the horrible fatigue and the gland by my right ear and behind my neck stay swollen all the time...I feel like all I do is sleep and when Im up Im tired...I had some blood work done and should get them back soon...I take vitamins and lots of B12 everyday and drink lots of water.  I guess what I need is help to get proactive about my situation...What should I do, what doctor should I go to, any advise you have for me would be great.  I havent worked for months and my money is running out fast...HELP!!!
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Avatar_f_tn

Hi Lisa,

Since I can't post many links on this board, I will zip you a private message with information that I have found to be helpful in my quest to conquer CFS/ME (AKA: chronic EBV or post-viral syndrome). I know the treatment I'm doing now is set out to cure CFS and that I'm making progress. It just takes a long time... LOL !
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540068_tn?1213855658
Can you give me the information on swthrt45622000 on yahoo messenger...
Lisa
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Avatar_f_tn

You didn't receive the information in your inbox ?
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Avatar_m_tn
Have yall had a problem with cold sores and EBV,   I have always had them they just seem to come on more often a take longer to heal now, and now I get them on my tongue never was there before?
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Had my 3 month follow up blood draw today hopefully I, will be advise next week my EBV numbers went down
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How long have you been ill with EBV, Padro ?
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I was told I had it with blood work in Feb,  I really think I got it before Xmas last year, Finally went to Dr. in Feb
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Avatar_f_tn

I would bring up the subject of CFS with your physician. The CDC recommends this if you've had EBV symptoms for at least 6 months. Of course the only downfall to this is a diagnosis of "CFS" could be in your medical records.... keep that in mind and always make sure you have continuous insurance coverage.

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I sure hope not, Maybe my numbers will be down.  I should say since Dec07  lets say 10 being the worst, which I was in Dec    I would say I am a 7+   My only issues now are the lightheadedness not everday like before but still there,  The minor ab pain/nusua and the tiredness, I can at least make it past 7.00pm now,  So if I get a good report from the colon/endo Monday and my numbers come down maybe just maybe I am on the right track.  But boy what a trip.  Monday and Friday (Primary Dr Appt.) will tell the story.
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I have a question about your comment regarding CFS being on our medical records. Is that worse than having EBV on our records?  I ask because I was going to talk to my doc about CFS. Is there a reason I would not want to bring it up?  I know what you mean about continous insurance. I have private BC/BS, PPO with a 3,500 deductable. I am sure my premiums will go up around 100.00 starting in October. I was thinking of going to a 5,000 or 10,000 deductable to keep my premiums lower.  Scarey thought to go that high, but what else do you do once you have EBV...I don't think an insurance company will take you.  Not sure about that though....
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Avatar_f_tn

I'm not sure if EBV is worse than CFS on your medical records. The thing is, if you were disabled, then you would certainly need to prove to your employer's long term disability company that you are that sick. I think then, CFS would be a better diagnosis and you would want to make sure that your physician uses the right terminology and does the right testing. There is now a test that can help prove disability in CFS patients.

Please double check, but the way that I understand it is that the law says that if you keep your insurance in force at ALL times and don't let it lapse, (doesn't matter which company) then the next insurance company cannot say that you have a "pre-existing" condition and refuse to pay for any treatments or testing related to that condition.

Good luck with your EBV titers. You know there are people who recover from CFS. Be sure to rest when your body tells you to and more importantly, keep your stress levels under control.  

If I were in your shoes... knowing what I know now about CFS, I would at least buy the Bragg's Raw Apple Cider Vinegar and add some to my water every single day. It kills viruses and bacteria and also helps your immune system. I know it gives me energy. And in addition to that, I would at least purchase Dr. Jernigan's virus formula. Remember that link I sent to you ? I would try that at first. But of course, before trying anything, let your physician know. (although it is all natural) Other supplements that many CFS patients are taking and that I have found to be helpful are: magnesium, B12 (drops or shots only), D-Ribose, L-Carnitine, COQ10 and fish oils.

Best,

PlateletGal
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P.S. --- I am assuming that your physician has not treated you with an antiviral medication, correct ?
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You are correct--no meds. I try to stay away from them.

I am taking everything you mentioned except Jernigan's formula and the Bragg's vinegar--great idea.  Also, I take 2 cc B12 shot 1xmonth (cheaper in one shot instead of every week) and I take sublingal B12 every day in addition to the shot. Is it possible to take too much?  Oh oh...

Well, after getting my last EBV test and seeing the horrendous statement "chronic active EBV" in the interpertation line, I have decided to talk to my doc about SS disability. I kept thinking surely this would end...it has been two years now. But, it appears I have been in denial. I haven't worked for the last two years and the required credits in required # of quarters is ending soon, so I feel like I better go ahead and bite the bullet and apply. I will probably use a lawyer since I don't have the energy to the paperwork myself (or the brain function :)). The name Binder & Binder keeps popping up on various EBV and medical forums...I'll probably just call them.

The doc has mentioned CFS a few times, but I kept saying I think it's "just" EBV and I would turn the corner soon. I suppose I better admit to the CFS. I don't know...this whole situation is so strange. Whoever thought our lives would change so much...

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Keep your head up,  Good Luck with your application for SS.
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"Whoever thought our lives would change so much... "

I know. I had undiagnosed CFS for so many years, right after I had a bout with mono when I was a teenager. I managed to work, but it is very difficult at times and I remember my boss did everything he could to keep me and let me work on weekends to make up for some of my absence.

I received an e-mail from the CFIDS Association of America this week. One of their new board members has CFS and in the e-mail, he shared his story. This guy is only 28 years old and after years of struggling, he finally had to quit his job and move in with his parent's.  He spoke about how his illness has deprived him of so many things, including a high school sweetheart.

I am very hopeful that a cure is on the horizon. To be honest with you, I don't trust pharmaceutical companies and have seen them in the last few decades not making any vaccines, but only medications for palliative care. But that latest antiviral drug that is now in its second trial at Stanford University is a possible cure. (thank you Dr. Montoya).

As Padro said, keep your head up.
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Did you ever tell me about the cold sore question?  
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Colon/Endo went fine this am,  Dr said only thing he could see was a Acid Reflux problem, at least makes me feel better, One more appointment Friday with my primary keep your fingers crossed my EBV numbers went down   Thanks Padro
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I've never had the cold sores, but I have heard of fibromyalgia patients often breaking out in shingles (also caused by the herpes virus). Since your immune system is compromised right now, I'm not surprised to hear that you have cold sores.

I'm glad to hear that your tests were negative and I hope that link I sent you about abdominal pain in CFS patients helped. I know we can get hit by anything. I often have disgestive issues myself.
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When you say gland by your right ear, is it the indentation that is sort of behind/below the ear?
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Got the bad news today myself EBV numbers still the same off the chart,  How is your claim progressing?
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Well, the claim question is an interesting one...because I quit work two and a half years ago to move in with my 90 year old fstep-ather and 80 year old mother, which means I did not pay into the SS system for two (2008 will be three actually), I do not heave enough credits! Which means, no disability. Also, my small retirements pension is just above the amount you can bring in for SSI. So everything is a no go.  Bummer. One foot in front of the other...relax, stay calm, and focus on healing your mind, emotions and body,.

A doc I went to last week in Atlanta, an Immunologist, has EBV herself--for, I think, four years. She said a ID doc who is a friend also, told her to not pay attention to the numbers!  They mean nothing--the ID doctor's don't even refer to them!  They simply look at the overall prognosis (?) line above the "='s" and "-'s" that says where you are now. For two years (four tests), all say "chronic active EBV."

What does your's say?  
So glad to hear all the other tests went well.
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Glad to hear from you I just ask plateletgal about you,  I like you have had bad news on the numbers they are still off the scale  Go to see my primary Friday do not expect any help   What did the doc in Atlanta have to say?
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My step dad fell and broke his hip on Thursday. I had to cancel this Tuesday's appointment! I'm not sure when I will be able to see her.  I am thinking of asking for the results over the phone, but doubt she will do it.

I had the test done at my IM doc's office locally the day after I saw her...so, I'm sure he has a copy of it. Maybe I'll just ask him for the results. Not sure if he can give them to me without her permission or not.

Let us know how your final procedure goes and what they find.

BTW, are you numbers in the 900's, 2,000,'s 3,000's and 4,000's?  Those are my four numbers. Terribly high numbers, I'm afarid. However, I will trust the immunologist and ID's doctor's belief that you do not pay attention to the numbers.

Wait a minute...you never said what the line said above the 4-Titers. Are you Active EBV, Chronic EBV, New EBV, or what?  Do you keep a copy of your results?
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I have them, but my test must be differant than yours my IgG is 600.0 and is negitive when it is below 18.0  so 600.0 is off the scale according to my doc.
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I am new to this but I just wanted to share with you I have had CFS over 21/2 years. My highest count was over 3,ooo and my last which was last week was 2,950. It has been lower but alway elevated.  The normal on my test is 0-99
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Why did disability turn you down?  If you don't mind me asking
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Did yours start out as EBV, at what point did they say you had CFS.  If you dont mind me asking what are your symtoms (symptoms) and treatments?    **
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Saw an ENT guy in Atltanta yesterday. My Immunologist had suggested I see him  and expect to have major problems discovered with my thyroid or other gland..  The ENR looked at my labs, biopsies, etc and at my swollen glands in my neck and said, "you have EBV...you body has been fighting a huge war on it for several years."  
He asked why I hadn't tried an anti-viral. He looked down my nose and throat to make sure nothing was going on. He did find I have a sinus infection.

He wrote a prescription for Famvir and for Doeycycline (misspelled?).  for the sinus infection.

He said if the Famfir doesn't help my lymph nodes come down in 6 weeks, we might consider another lymph node biopsy to make sure some low grade lymphoma isn't going on.

I will go see an Hemo also in a few weeks.

Anyway, I thought it was great news.

He said he KNOWS the EBV VISUS LIVES IN THE LYMPHATIC SYSTEM.  So many doctors say it doesn't; but he is sure it does.

I don't know why some people get swollen lymph nodes with EBV and some don't. But, I sure do.

Have you ever tried Famvir? I hate taking medication. But, am thinking it has been 2.5 years...I must do something. Chronic active EBV can lead to nasty things.

Interesting that my EBV numbers keep going up, but my lymph nodes are going down.

Anyway, I wanted to let ya'lll know how the doctor's visit went. Thanks again for alll your support.
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"He asked why I hadn't tried an anti-viral."

Excellent question !  It upsets me so much how these physicians are shrugging their shoulders and saying, "well... it is a virus.. you just need to wait". The Fibro/CFS experts are saying the opposite. They say the sooner you treat the virus, the better and yes, there are treatments available.

Good to hear from you ! I'm glad you went to an ENT physician who knows about EBV... count yourself lucky !!!

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Good news guys have a appointment with a Infectious Disease Doc this Thursday after much prodding of my primary,  If yall (Texas LOL) could help me make up a list of questions I would apperciate it don't want to leave anything un ask.  Padro
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P.S.  Great news pvn
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I'm glad to hear it ! I honestly think you need more than a nutrional supplement to help you get through this.

One thing that I've learned that is if you have chronic EBV, it is probably CFS. Since I've had CFS, I learned that the virus isn't really the problem. The virus has already done the damage. Certainly the virus played a role with my getting ill, but that was only part of it.
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what do you think I should ask her to do for me?  Besides make me well LOL,  My main issues here lately are chest pains.
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You definitely want to get treated. It is up to you which treatment route you want to choose. (feel free to view my profile and check out my website... I list some treatment plans on there recommended by the experts. I still need to add Jernigan's though.. LOL!)

So you can you describe your chest pain ? And do you have shortness of breath ?
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The following are the lab test the ID Doc ordered,  Total IgG, IgA,IgM,   CD4, CMV, Toxoplasmosin, Serology, HIV.   From what I can make out she advised we all have EBV so the numbers are not Important right now what is,  whats going on with my Immune System.( thus the test)  Should have results back in the a week.
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Good tests to start out with. I know CD4 levels in CFS patients are often abnormal. We may all have had EBV, but we all don't have chronic EBV symptoms and/or Chronic Fatigue Syndrome.  ; ^ )

Good luck !
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Your so right, I think thats why she said there had to be something else going on.  However she was really nice and seemed to be interested and from what I have heard very dedicated to finding what the problem is (thats refreshing)  Also heart doc did a ekg and listened to me and stated Whatever ir is its not your heart (next time the pains come ignore it) what a statement huh.
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I'm happy that you have an understanding physician. If you really need that diagnosis, remember to check out my website and feel free to print out anything you need to discuss with your physician. I even list tests that can help diagnose CFS. And in fact.... CFS patients (all who were tested in a study) do have heart problems:

██ Holter Test (heart) "All 60 patients with CFS showed repetitively flat to inverted T waves alternating with normal T waves"

http://www.chestjournal.org/cgi/content/abstract/104/5/1417

But remember this diagnosis will stick with you (good ol' insurance companies)  Sometimes you can manage your symptoms by using supplements or try to kill the pathogens responsible for making you ill... Jernigan's treatment is doing that for me and I'm no longer taking antibiotics.



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██ CD4 Count --- "We have 155 cases with random CD4 counts below 500, 62 cases below 400, 21 below 300 and 3 below 200." --- Dr. Paul Cheney

Cheney also says, "some of my sickest patients have elevated CD4 counts"  Source: http://www.immunesupport.com/92fal007.htm

source: http://www.ncf-net.org/conference/CheneyTestimony.htm

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I hope you are right, I know this sounds bad but dont really care if its on my records or not just want it fixed and to know whats going on.
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P.S. have you already had all these test in the past?
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How long did you take antibiotics? Did you have any bad or lasting side results from it?
Did you, or, are you taking anti-virals? Any lasting side effects?  
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So glad to hear the good news about your chest and other. Hope you are feeling better and better. It's just so nice to get at least some of the answers, isn't it!  My ENR wants the hemo to give me the SSB and SSA, and T & B Lymphocytes Differential tests...and anything else hemo wants to give. Have you had any of those?
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not that I am aware of,  so many test I am getting lost.  I have not had any antibodes or anti-virals at all.  I am still waiting for someone to tell me whats wrong with me if they know,  I think this ID Doc is my last try running out of $$$$ and sick time to go to appointments,  Working is not a option.
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P.S.  what is the SSB and SSA and what do they check for.
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I am on day 6 of anti-virals and they seem to be working (Famvir) and antibiotic for Lyme (doxycycline)  (I had a tick bite just before my lymphs swelled up 2.5 years ago...they're still swollen!) so ENT thinks I have something going on from that tick bite.  
Anyway, things seem to be getting better as far as lymph swelling is going down a bit and my neck is definately getting smaller.

I also went to a hydro colon cleanse person this week two times and that may be what is helping. I know it helped me before when I was visiting my daughter in had one done.

I still believe self lymphatic drainage massage (my PT taught me) is helping greatly.  
Let us know how the tests come out. I've had several of the same ones.
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I had the blood test and the call from the Doc staff just before the holliday weekend,  Advised blood results normal,  and my question to her clerk was ok whats next to which she replied I dont know will have to check with Doc,  That was last Thursday followed-up today and was told still had not got to speak with Doc on my problem but would call me as soon as she did.  Don't feel I am going to get anywhere here, she was really nice, however I dont know if she just ran some test and thats it or what?????
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Okay, I think often it comes down to the fact that EBV lives in the lymphatic system. If our EBV is in a flare, we have lots of various systems.  

I am on week two of anti-viral, Famvir. I will let you know how it goes.

My ENT has worked a lot with EBV people and feels Famvir helps. Again, I'll let you know.

I am going to Hemo on Monday for other blood tests.

Am thinking of getting Hormones tested.
PlateletGal, have you had hormones/thyroid tests? If so, which kind should I ask for?

This is crazy stuff.  After hemo tests, I may stop chasing something else being wrong.
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If you would like your hormones tested, you may want to start off with:

Prolaction
PTH or T3 REVERSE (thyroid)
FSH
LH
Estradiol

I would also recommend asking your physician to check your cortisol level. Many CFS patient have a low A.M. cortisol level and some pituitary/adrenal dysfunction. And many of us have a low-thyroid:

T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."

Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/library/showarticle.cfm/id/4320

Good luck with the anti-viral treatment... let us know if it helps. I know another CFS patient and it helps with his symptoms. I'm taking a natural remedy that targets viruses and it makes you feel worse because it is killing off these pathogens. It is sort of like going on a detox diet and then feeling great afterwards. I'll keep you posted as well.
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your comments are very interesting. it is refreshing to read info like this .I am sure that you would be interested in my son's story.It has been going on for twelve years! since he was six, he is now eighteen and we only last year managed to convince my dr to refer him to an immunologist. So many years have been ruined through lack of support!
I still feel they are dodging the issue and dont really 'get to the point'. I think sometimes dr's in the U.K dont feel it is important to explain to the patient what is wrong. They are aware of my medical knowledge but they still dont seem to think we need to or should
expect answers! I would love to speak to you more as i am so interested in how EBV and
CFS are treated in the U.S.A. In the past my son had low IGg and was initially diagnosed with a mild hypogammaglobulinaemia. This was diagnosed by the rheumatologist by blood test and history. The next Dr. says 'no' it is not that but it may have been a transient hypogammaglobuliaemia. She tells us it is not important that he has had elevated LFT's which have now settled. He has had EBV but it is no lomger active.He has elevated CD4,CD8, T cells and K cells. He has had alifetime of infections including glandular fever (mono) and viral meningitis. We are struggling to understand if his immune system is overactive, which is what they suggest. if that is the case why did he have low immunoglobulins in the past? The Dr. says it is blood test are done in two different hospitals so the ranges differ....which i find bizarre!
I would appreciate so much your thoughts...i am feeling it is CFIDS but the immunologist looked at me as if this was something i had invented!
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Hi Debby !

EBV, CFS, fibromyalgia and autoimmune patients share the same frustrations that many patients in the U.K. do. You should read the latest survey of patients with these conditions and how they feel about their physician. In fact, a recent survey of pain patients (including fibro & CFS patients), found that 1 out of every 20 people has thought about killing their physician !! YIKES ! It is sad that we've lost confidence in the people who are supposed to be helping us. The results of this study shows how many of us feel neglected by the healthcare system.

I don't know much about hypogammaglobulinaemia, but I'm reading right now that it can be a secondary condition... due to viral infections.

As far as the elevated CD4 count... this is what Dr. Paul Cheney (CFS expert) has stated:


"We have 155 cases with random CD4 counts below 500, 62 cases below 400, 21 below 300 and 3 below 200." --- Dr. Paul Cheney

Cheney also says, "some of my sickest patients have elevated CD4 counts"  Source: http://www.immunesupport.com/92fal007.htm


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
unrefreshing sleep
joint pain (without redness or swelling)
persistent muscle pain
headaches of a new type or severity
tender cervical or axillary lymph nodes
sore throat
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
brain fog
chest pain
shortness of breath
chronic cough
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)
jaw pain
weight loss or gain

source: http://www.cdc.gov/cfs/cfssymptomsHCP.htm


Tests that CFS often fail:

██ T3 REVERSE -- "The mix of treatments needed varies from patient to patient. There are some abnormalities that are common. For instance, close to 100% of individuals with these syndromes have low thyroid. This is, however, usually not picked up on the standard blood tests because the TSH is not elevated in these individuals due to pituitary dysfunction. Many of these individuals will also have high levels of the anti-thyroid reverse T3, which is usually not measured on standard blood tests. In addition, the majority of individuals can also have a thyroid receptor resistance that is not detected on the blood tests. Consequently, thyroid treatment, especially with timed release T3, is effective for many patients. T4 preparations (inactive thyroid) such as Synthroid and Levoxyl do not work well for these conditions."

Kent Holtorf, M.D.  --- link to article: http://www.immunesupport.com/library/showarticle.cfm/id/4320

██ ANA -- "Up to 25% of ME/CFS patients have an abnormal ANA" --- Dr. David Bell   link: http://www.davidsbell.com/PrintLynNewsV4N2.htm

██ Uric Acid --- "Uric acid levels in CFIDS patients are among the lowest I've ever measured, in all of medicine". --- Dr. Paul Cheney

source: http://www.dfwcfids.org/medical/cheney/heart04.part2b.htm --- but also see:

http://groups.msn.com/Neuro-ImmuneSupport/cfidsresearch.msnw?action=get_message&mview=0&ID_Message=395&LastModified=4675644569616562305

██ A.M. Cortisol Level --- source: http://phoenix-cfs.org/Hypocortisolism%20in%20CFS.htm and Evaluating Salivary Cortisol Levels in CFS Patients

██ CD4 Count --- "We have 155 cases with random CD4 counts below 500, 62 cases below 400, 21 below 300 and 3 below 200." --- Dr. Paul Cheney

Cheney also says, "some of my sickest patients have elevated CD4 counts"  Source: http://www.immunesupport.com/92fal007.htm

source: http://www.ncf-net.org/conference/CheneyTestimony.htm

██ MRI Scan --- "Half have abnormal MRI scans" --- Dr. Paul Cheney

source: http://www.ncf-net.org/conference/CheneyTestimony.htm

"Cranial MRI will show small T2 weighted high intensity lesions in 80% of cases" ---- Dr. Charles Lapp

source: http://www.cfstreatment.info/for_your_doctor.htm

██ SPECT Scan --- "80% have abnormal SPECT scans" --- Dr. Paul Cheney

source: http://www.ncf-net.org/conference/CheneyTestimony.htm

██ EEG --- "95% have abnormal cognitive evoked EEG brain maps" --- Dr. Paul Cheney

source: http://www.ncf-net.org/conference/CheneyTestimony.htm

██ Sleep Study http://www.cfids.org/archives/2002rr/2002-rr4-article01.asp

██ Tilt Testing to Rule out POTS (postural orthostatic tachycardia syndrome) --- http://www.cfids.org/about-cfids/orthostatic-intolerance.asp?view=print

██ DEXA Scan --- source: http://phoenix-cfs.org/The%20SITE/OsteopeniaCFS03.htm

██ Holter Test (heart) "All 60 patients with CFS showed repetitively flat to inverted T waves alternating with normal T waves"

http://www.chestjournal.org/cgi/content/abstract/104/5/1417

██  Viral Testing --- EBV titer, CMV titer, HHV-6 titer (best methology & lab: http://www.drpodell.org/chronic_fatigue_syndrome_hhv6.shtml ) You can also visit the CFIDS Association of America's page on viruses that play a role in CFS patients.



I hope this helps ! Please keep in touch !

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Thanks so much! I have spent so much time researching that I feel i do have a good understanding of what is going on and the knowledge you have is amazing...it makes me
feel stronger in my beliefs. I am tired of being treated like a fool by doctors and talked down to as if I couldn't possibly understand. A family doctor once told us that Tim lacked 'brain juice' and that some people who lack brain juice kill themselves and others kill other people! She obviously felt that Tim was not able to understand the word endorphin!
She refused to refer us to a CFS clinic even though he met all of the initial eight criteria.
She said he was overweight spotty and depressed  and needed  to run around the block a
few times. She did not seem to appreciate that we had already tried graded exercise and CBT. What can anyone do when they are met with such ignorance. There is a great charity over hear called The Tymes Trust who are doing some great work in supporting young people with ME or CFS.
Have you ever looked at some of the links between polio enterovirus and ME/CFS
and the creation of ' super viruses' like EBV when there is a void created in the virus world by the development of a vaccine. There were some interesting studies carried out on nurses. I'll have to brush up on it! One of my patients has CFS and is a professor. He has in the past  come uncomfortably close to uncovering some links between  some vaccines and syndromes such as CFS. It has suited the medical profession to  label him 'mad'. It is often easier to discredit than to face up to the facts and what could ensue if his theories were proven! Thank you for all the info!
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I met with an Atlanta Hemo yesterday.  
He said of all the tests I've had in the last two years, the one that jumped out at him was from 11/06 where a Chromosome Analysis was done of a lymphnode.

It read,"Chromosome complement in which 3 of the 20 GTW banded cells analyzed we hyperdiploid with gains of multiple chromosomes and rearrangements of chromosomes 6 and 19." "Seventeen normal cells were observed."
"Consistent with Lymphoproliferative disorder."

He wanted to know why none of my previous doctors picked up on that. I didn't know.

Anyway, he believes that indicates a lymphoma somewhere. He said it must be low grade or I'd be in a world of hurt now (two years later).  He wants to take several lymph nodes out and tests them.

He said if they do not show lymphoma, then he wants to do DNA testing as sometimes lymphomas hide in T3 cells.

I wonder if, hopefully, because he is an hemo/ocon, he is jumping to a logical conclusion in his field; and my other doctors ignored it because the Flow Cytometric analysis done at the same time showed noi abnormal lymphoid population. I'm hoping that or something like that.

I hate to have more lymph nodes taken out as I know it compromises the lymphatic system. And, mine is already slowed down and I have to massage it daily to keep it flowing steadily.

Any thoughts?
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I'm sorry to hear that you have this condition, but I am happy that you have a HEM/ONC physician who found something that was previously missed by your other physician.

I would consider addressing your concerns with your new physician. I know the immune system is so complex... but I have heard that we have thousands of lymph nodes in our bodies.

Do do you believe this lymphoproliferative disorder was caused by your EBV infection ? It sure sounds like it could have been.

Sending hugs your way,

PlateletGal


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That is horrible what you & your son have endured. I've heard many horror stories like that from CFS patients. At least in the U.K., they are calling CFS.... "myalgic encephalomyelitis". Here were are struck with the label "Chronic Fatigue Syndrome". As someone had said on another website, it is like calling Parkinson's disease, "Shaky Hands Syndrome". There are politics involved with CFS as well.

I don't know too much about vaccines and CFS, but I do know that the physician who created the Marshall Protocol and other physicians have expressed concerns about vaccines and immune dysfunction. Since I've had CFS symptoms, I cannot tolerate vaccines very well at all. The allergy shots were making me so sick that I went against my allergist's advice and stopped altogether. Years later, another physician told me that I did the right thing (this was before I was diagnosed with CFS).

Here is an article on vaccinations by a physician who has my attention and respect. (check out his bio online...!)  If the computer asks you for your username and password, click on "CANCEL" and the article will appear:

http://www.immed.org/autoimmune/CrimPol_Vaccines_03.rtf

Everything he says makes sense and the studies done in New Zealand. Well no wonder why so many children here in the U.S. have allergies and asthma problems.
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In the  U. K there is an accepted  difference between CFS and ME. Some interesting research came out of the university of Dundee which identified chemical markers in the brain in ME patients The two disorders should never be grouped together. They of course
have similarities but the origins are different and CFS is now recognised in its own right,so much so that the government has set up guidelines for looking after people with CFS. It is good news but some old dinosaur phsicians are SO stuck in the old days and have such big egos that they can't or WON'T read the research.
I am VERY interested in what you tell me because Tim first had his problems about three weeks after the pre school booster! They thought he had scarlet fever but the SF titre was negative so they tried to fob us off with some random diagnosis. It is sometimes difficult for me because I do appreciate that vaccination and clean water
have had a huge impact on public health but I do wonder if some individuals do not respond in the desired way to vaccine and society accepts that as sort of 'the acceptable risk'. I sometimes struggle because I myself administer vaccines.
The BCG is interesting and I know you don't do this over there. We now only administer it to 'high risk' individuals. I wish I had never let Tim have it but at the time
I was less informed and bought into the the fear of TB , living in London it seemed the right thing to do. I now realise that it was not only a pretty useless vaccine but quite a dangerous one especially for someone with an immune disorder. Have you ever had a
flu jab? I have never let Tim have it because it is live . I am in a quandry sometimes.
As a respiratory specialist nurse I manage many children with asthma and the 'Dutch
Barn' Study is interesting with its conclusions about endotoxins and the prevalence of asthma. We are just too clean in many ways these days with our antibacterial this and that! I sometimes wonder if healthcare professionals who are continually bombarded with bacteria and viruses and chemicals to mix and administer have a
higher risk of immune disorders in themselves or their children? I worked on a paediatric unit for many years with many others who stayed there years and it alarms me that so many of my colleagues have gone on to develop cancers, lymphomas, MS
Very weird!
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Hi Debby,

A few of us fibro/CFS patients are sharing some of our stories about what it is like for us to have an invisible illness. Feel free to jump in if you like... that goes for everyone else as well:

http://www.medhelp.org/user_journals/show/17120

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Hi.  I am new to this board.  I've enjoyed reading the above stories.  Very informative.

After six years of blood test after blood test after blood test.... I've been diagnosed w/ Fibromyalgia, Osteoarthitis and a touch of Reiter's Syndrome.   I've tried many different protocols (i.e. dual antibiotics (Doxy and Rifampin) for one full year for Reiters Syndrome.  No help.   I finally ound a CFS doctor who said my EBV antibody were way to high indicating "Active" EBV (there are three different IgG readings).  After  30 days of Valtrex, my doctor switched my prescription to Famvir.   I've been taking Famvir for about three weeks w/o much improvement.    I also started taking Lyrica (just started this week) for my FM.   Obviously too early to judge its effectiveness.  In addition to the above, I am taking Doxy (100MG) every other day for my Reiter's Syndrome;  Tramadol / Ultram for my pain: Flexiril for pain or to sleep;  and an ocassional Xanax for anxiety.    My question to all is:  1) Any other thoughts on how to treat CFS/Chronic EBV?     2) I've been getting a very small lump on the roof of my mouth near my palette.  This very small lump comes and goes.   It can disapear over night....then return the following day and stay w/ me for another 5 days...then disapear ..the reappear.    I discussed w/ my CFS doctor last night and asked if I should a biopsy.   She was not concerned about this lump.     My question is ... should I be????

Thanks for your help!!!



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Which antibiotic protocol were you on and for how long ?
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The first antibiotic protocol was 1 year of doxy and ripfampin (Phase III / Clinical Studies).  

I am currently taking doxy every other day as prescribed my Rheumie (a similar version to the Marshall Brown protocol.

Neither has helped my pain / fatigue.
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What type of Doc are you seeing, Does He/She specialize in EBV/CFS
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I've never heard of the Marshall Brown protocol, do you have information on it ?   I have heard of the Marshall Protocol (Dr. Trevor Marshall) and I know that other physicians such as Dr. Mark Shaw and Dr. Garth Nicholson are having success with antibiotics. If I remember right... Dr. Shaw was seeing about 80% success in his patients.

When you were on antibiotic therapy, were you having any herxing (detoxing) symptoms ? Normally a person feels worse on antibiotic therapy because the pathogens that are responsible for the illness are dying off. It is very similiar to doing a detox diet. Of course you may note that people who frequently do detox diets say they feel better after dieting.

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P.S. ~ You may want to consider googling "The Roadback Foundation" and/or other search for avenues that may help your condition. Of course discuss everything with your physician and also research the antibiotics that they use in these protocols.  I don't know much about Reiter's Syndrome, but I am reading that Chlamydia trachomatis is the bacteria most often associated with Reiter's syndrome acquired through sexual contact. Several different bacteria are associated with Reiter's syndrome acquired through the digestive tract, including Salmonella, Shigella, Yersinia, and Campylobacter. People may become infected with these bacteria after eating or handling improperly prepared food, such as meats that are not stored at the correct temperature.

As far as the lump in your palette... consider talking to your physician again as to why she isn't concerned about it. If you aren't satisfied with the answer, you can always get a second opinion.

Best,

PlateletGal

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Sorry for the delayed reply....  Here's more on protocol.."The Marshall Protocol is a medical treatment being used by physicians worldwide to treat a variety of chronic inflammatory and autoimmune diseases including (but not limited to) Sarcoidosis, Chronic Fatigue Syndrome, Fibromyalgia, Crohn’s Disease, and Rheumatoid Arthritis. While other treatments for chronic disease use palliative medications in an effort to cover up symptoms, the Marshall Protocol is a curative treatment, which addresses the root cause of the problem."    

Again, it's not helping me.     I also started taking Provigil....It's keeping me up at night and giving me bad headaches.   Good news is it does keep me very alert during the day.

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you had said you had a CFS DR.    What kind Dr. was this and what was his field??
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