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...

[PlateletGal]

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 !

[debby1]

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!

[PlateletGal]

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.

[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.

[Padro46]

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?????

[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.