I have chronic EBV
Diagnosed last week with very high ebv titers and told that it was indicative of a past infection. Possibly mono. Problem is I haven’t felt well for 5 yrs. The Dr. told me to rest for 3-4 mts and come back if I didn’t feel better and that stress was probably causing ALL my symptoms. I am not satisfied with this diagnosis as I am functioning on a thread of energy. Anyone have any suggestions on questions to ask of your physicians to get to the bottom of your fatigue?
I have been diagnosed with epstien Bar, Chronique fatigue, and it’s been 2 1/2 years of this disorder or what ever, and although I am better, I am not curred. I mean I know it does not go away ever, but the foggy head and being dizzy and tired are still present. I gained wait, and since I can not exercise how I use to, or eat how I use to, I am having a hard time healing and getting the exercise I need, any suggestions?
Thanks,
Qui
EBV Related MAIDS – Heard of this???
I’ve been diagnosed with EBV Related MAIDS (see below). A new diagnosis after years of sinus infection. I’m now on a 3 month immune treatment regimen (month one and two a double dose Hep-B Booster shot; month three IgG injection). Meanwhile I am exhausted and am not being treated for my current sinus infection. Does anyone know if:
- How effective is IgG treatment for boosting EBV related immune system deficiency?
- How can I enhance my immune system with dietary means?
- Are there any other treatments I should consider?
- If IgG therapy does not work, how will I live with being this tired? How will I fight of sinus infections?
Article title
EPSTEIN-BARR VIRUS-MILD ACQUIRED IMMUNE DEFICIENCY SYNDROME (EBV-MAIDS) IN POSTSURGICAL SINUSITIS
Author
Toffel, P. H. Christensen, J.
Journal title
AMERICAN JOURNAL OF RHINOLOGY
Bibliographic details 2002, VOL 16; PART 6, pages 291-296
Publisher
OCEANSIDE PUBLICATIONS
Country of publication USA
ISBN
ISSN 1050-6586
Language English
Epstein Barr Virus Mild Acquired Immune Deficiency
Syndrome (EBVMAIDS) in Post-Surgical Sinusitis.
Paul H. Toffel, MD, Los Angeles, CA
Joshua D. Christensen, Los Angeles, CA
Abstract: Purpose: Functional endoscopic sinus surgery
(FESS) has remarkably improved the treatment of chronic
rhinosinusitis patients. Most experienced practitioners
achieve reported success rates of 85-95% among their
patients. However, 5-15% refractory patients reported by all
rhinologic surgeons leaves an exasperating and perplexing
group who, despite appropriate mechanical corrections,
continue to experience debilitating rhinosinusitis episodes
requiring repeated oral and IV antibiotics, or in some cases,
anti-fungal therapy. After years of observation, it was felt
these difficult patients may suffer from a common thread of
partial immuno-compromise. Drawing on military experience
of treating immuno-immature populations prone to EBV
infectious mononucleosis, and post mononucleosis syndrome,
it was sought to screen disabled refractory patients for this
factor, and treat them with long-standing military protocols for
the immuno-immature populations dispatched to third-world
combat conditions.
Methods: 42 post-surgical refractory sinusitis patients out of
approximately 1600 FESS patients managed between 1993
and 2001 were found to have significant elevations of marker
EBV antibody titers, and were treated with the military postmononucleosis
and prophylactic protocol of serum immune
globulin I.M. injection therapy, after informed consent, and
were then followed for reduction in frequency of sinusitis
episodes and changes of quality-of-life visual analog scale
derived from the Rhinosinusitis Outcome Measure (RSOM 31)
outcomes tool. Results: 40 of 42 patients reported significant
drops in recurrent rhinosinusitis rates and average
improvement of 40% in quality-of-life scaling during this
preliminary study. Conclusion: Diagnosis of EBV-MAIDS among
refractory post-surgical sinusitis patients occurs at a
significant rate, and treatment protocols based on longstanding
military-style serum immune globulin prophylaxis
have resulted in significant improvement!
in rate of infection and quality-of-life among this cadre !
of perplexing patients. This study can be expanded to multicenter
trials, especially at institutions used to handling
seriously immune patients as those with HIV-AIDS. It appears
that immuno-compromise occurs over a spectrum, and
detection of mild to moderately immuno-competent patients
among the refractory post-surgical rhinosinusitis population
can lead to successful treatment and improved quality of life.
Hello Everyone,
I am trying to find information on EBV-related MAIDS (Mild Acquired Immune Deficiency). My presenting problem was chronic sinus infrections … but that seems to be the sympton and EBV MAIDS the actual cause. Info on the EBV MAIDS syndrom is in “My Story” section of CarePlace
I’ve been diagnosed with EBV Related MAIDS (see below). A new diagnosis after years of sinus infection. I’m now on a 3 month immune treatment regimen (month one and two a double dose Hep-B Booster shot; month three IgG injection). Meanwhile I am exhausted and am not being treated for my current sinus infection. Does anyone know if:
- How effective is IgG treatment for boosting EBV related immune system deficiency?
- How can I enhance my immune system with dietary means?
- Are there any other treatments I should consider?
- If IgG therapy does not work, how will I live with being this tired?
- How will I fight of sinus infections?
Thank you,
Eric
My name is Tiffany, I am a 30 yr old W female. In the last 4 months I have seen my PCP of ten years, had two trips to the ER, seen a cardiologist, and switched to a new PCP two weeks ago. I was finally checked for EBV and got those results today, which were positive. I was told that whatever is causing this is chronic as I do not have mono.
My main compalints are EXTREME fatigue, anxiety and tachycardia. Until 4 months ago i worked 60 to 70 hours a week and I own my own business which is now up for sale because I can’t work more than about 15 hours a week right now. I am looking for some support, insight, and general information on dealing with this and where to go next to better care for myself. I am very tired and frustrated with all of this but am greatful that after 4 months of testing at least someone found something. Autoimmune disorders are very prevalent in my family.
I am 47 years old and was diagnosed with EBV in 2001. I have continually had health problems since then. I feel that they are all as a result of this illness. I would just like to be a part of a group that discusses different situations that arise that may be related to EBV. :o)
I was told July of 2006 that i have CEBV, Hhv-6. That the Hhv-6 caused my TN. I just to find an ID Doctor in my area that will take my case or at least a Doctor that will help me.
I also have FMS and asthma.
I am a 57 year old woman, married an have 2 grown sons and 6 grandchildren. I have just been diagnosed with EBS and have alot of questions that I hope someone can help me with. I will wait to ask them when I see if someone writes back. Please help.
Lanie
i just got out of the hospitial, the dr said it was called Epstein Barre Virus
My daughter was diagnosed with EBV about 7 years ago. She also test positive for Lyme Disease along with everyone else who lives in my area. She has been cronically ill and catches every cold, bug, flu you name it if it’s going around she gets it. Since the EBV, which brought on severe migranes she continues to get them periodically, no one in my family has ever had a migrane. She’s just had her yearly phycial and still tests positive for both Lyme and EBV. Her immune appears to be comprimised by all this. How do I get this out of her system and get my kid heathly !
I went back to the doctor today , he says that my EBV is going down, but the last time it went down then spiked up. I first started at 135 which he then said I had mono, it dropped 1 week later to 113, so he then decided to test me again the following week, it went to 180, so 2 weeks ago he tested me again, and said to come back in 2 weeks. My EBV is 155. What am I to do? The normals are 0-99. I know that most doctors won’t diagnose you with chronic fatigue syndrome. But give me a break… I need something or some answers.
Any comments would help.
mommiemed
Hi I have Mono and I was diagnosed with it after having it for about a month. I never really did anything to rest, I am still very tired and I was just wondering when will I feel better?
Ive been living with this virus for many years but have never had such a bad time with it as now!! my blood count was 2354 and normal is 0-99…not good…feel like the life is being sucked out of me…
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
I just received the diagnosis of EBV after MONTHS of testing and trials of medications to treat continuous dizziness, fatigue, and chest pain. Anyone else have dizziness as a presenting symptom?