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Long Term Chronic EBV

pvn
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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Avatar universal
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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have you ever heard of blood in urine from EBV
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have u ever heard of having blood in urine from EBV?
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have u ever heard of having blood in urine from EBV?
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Hi! I know this is really old but I have had EBV for the past 2 years and recently found out I also have Hashimoto's and advanced adrenal fatigue.  I would love to hear how you are doing and what if anything helped you out. Thanks for your time!!  
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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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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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Avatar universal

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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What type of Doc are you seeing, Does He/She specialize in EBV/CFS
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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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Which antibiotic protocol were you on and for how long ?
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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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Avatar universal

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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Avatar universal
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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Avatar universal

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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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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pvn
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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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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Avatar universal

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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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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Avatar universal

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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pvn
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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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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pvn
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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