EBV-MAIDS newly diagnosed

[mamaluv430]

My daughter was just diagnosed with Epstein Barr Virus-Mild Acquired Immune Deficiency Syndrome  She had mono when she was 16. She has had many sore throats, including Strep throat, pneumonia three or four times, severe bronchitis, etc.  She is 25 and a fine athlete, strong, fit, healthy except for these recurrant issues. She has begun monthly immunoglobulin injections because the ENT says that this condition can go into lupus, rheumatoid arthritis, or MS.

The doctor heard her complaints and felt sure that she had EBV-MAIDS. He is doing research on this at USC Medical School. He says there are 400 patients with this condition on monthly injections. To make the diagnosis he sent her to a hospital and had a blood panel done and sent to a lab in Utah for processing. It showed her Viral Capsid Ag (VCA)
lgG to be 1:540 where normal is 1:10 and Early Antigen (EA) IgG 1:40  where 1:10 is normal and Nuclear Antigen (EBNA) to be 1:20 instead of <1:5.   Do these numbers mean anything to anyone?  

This is the first doctor we have found who has any answer to what could be making such a healthy young woman so ill two or three times a year. But I can't find literature talking about this EBV-MAIDS except for his paper. Is it a real thing?  Will these shots for the rest of her life really help? We live in Los Angeles and are looking for a really good naturapathic physician to help her build her immune system as well. Please advise if you know of any one or any supplements.
Thank you and may you all grow strong and healthy.

[bucks1]

I have been reading your post and the wealth of info has been very helpful.  I was recently treated for EPV - I have ended my medication but am still very tired and the symptoms do reocurr - I am happy to find out that they are triggers I can watch out for.  I was also asked to take a calcium pill and addl vitamin D when my symtoms began.  I love the info on the cayenne pepper and olive leaf extract.  

Again, thank you.

[urban234]

Hello,

I was reading through the posts in this forum and I was hoping you could tell me how you were diagnosed with CAEBV?

I had mononulceiosis in highschool (around the age of 15).  Ever since then, I have never been the same.  Everyday I am very fatigued (it has been over 10 years).  Sleep and exercise does not seem to help.  I am convinced this stems from the EBV and want to find out if I actually have CAEBV.

Thanks!

[mario62]

MARIBAVIR is a new drug licensed by ViroPharma from GlaxoSmithKline in 2003 for the prevention and treatment of human cytomegalovirus disease in hematopoietic stem cell/bone marrow transplant patients. It showed promise in Phase II clinical trials and was granted fast track status, but failed to meet study goals in a Phase III trial.

However MARIBAVIR proved to be quite effective and non-toxic in inhibiting  Epstein-Barr viral transcription in addition to viral DNA replication.

Pls check flwng links:
http://jvi.asm.org/cgi/content/abstract/JVI.01575-09v1

http://jac.oxfordjournals.org/cgi/reprint/56/2/277

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC400567/pdf/1030-03.pdf

On ViroPharma site, they say that MARIBAVIR is currently under internal review.
http://www.viropharma.com/pipeline.aspx

We should advocate to ViroPharma not to drop further development and marketing of MARIBAVIR.  It doesn't work with HCMV but it works very well with EBV. The problem is that official medicine is used to dismiss EBV and Infectious Mononucleosis as an everybody illness that is self limiting, so no need for any kind of therapy. This is true for most people but it is quite dramatic for the few like me that have to cope with recurrent active mononucleosis.

[watson01]

Hi Momaluv.  I am affiliated with a university and I have access to various search data bases that enables me to search for scientific/medical journals.  If you provide me your doctor's name I can try and find his, as well as other scientist liturature on Epstein Barr Virus-Mild Acquired Immune Deficiency Syndrome. and pass it along to you.  I am not familiar with this syndrome.  I have only heard of chronic active EBV.

[PlateletGal]

Hi ! I remember being diagnosed with asthma... yet the breathing treatments didn't seem to help me too much. Many people with CFS often get costochronditis and have respiratory problems. Before I started the treatment protocol that I'm currently on, I also used to sometimes have pleurisy like symptoms.

I hope that you will keep us posted on your daughter's progress and treatment ! I'm glad I could help and just share information with you that I've learned along the way on this bumpy road.

[mamaluv430]

How do I thank you for this wealth of information?  I am so grateful for your generosity of time and knowledge in sharing all of these products with me. I will pass this all along to my daughter today. Thank you so much.

She called me yesterday to say that she was scared because she had very bad pain in her chest. CAEBV from this chat pointed out to me that I should always believe what my daughter is telling me and to support her. So I told my daughter that she needed to talk to her doctor immediately. She was reluctant to call him because she had a follow up appointment to see him in two days to get results from her last chest xray, taken two weeks ago.  I told her this was an emergency because of the pain and her fear (which is very unusual for her) and that she had to listen to her body and care for it.

She learned from her doctor that the chest xray had been clear for the first time since her last bout with pneumonia. He couldn't imagine why she had the pain and sent her on an emergency referral to a pulmonary specialist who saw her in the afternoon. He did breathing tests and checked the xray and said she has asthma and an inflammation of the cartilage between the lungs and that her lungs were good. He gave her a breathing treatment, an inhaler, and instuctions to treat the discomfort with Advil...In other words, this was not a serious condition. He said this is fairly common (the chest pain) in women her age and is frightening because of worry that it is the heart or in her case, following pneumonia, the lungs. But this is probably an allergic reaction tho her boyfriend's cat. Mama relief, big time.

She has a telephone consultation appointment with a naturopathic doctor from La Jolla tomorrow to discuss supplements to boost the immune system. I think we are finally moving in the right direction.

I am so happy that I have found you folks and want to thank you for any suggestions you have given or will give. Have a great day, one and all.

[PlateletGal]

P.S. ~ I don't have any tips for pneumonia. Of course that is a more serious illness and so if it were me personally, I would stick with the antibiotics. One thing your daughter may want to consider is taking Probiotics when she's on antibiotics. The Probiotics should help replace the good bacteria that the antibiotics are killing.

Also, if your daughter considers taking any of the immune supplements I posted, she definitely needs to discuss with her physician first. It is important that he is aware of everything she's taking... supplements included.

[PlateletGal]

Tricks I've learned through Naturopathic physicians and/or homeopathic practitioners on how to beat a sinus infection and an URI (upper respiratory infection) --- WITHOUT antibiotics.

Sinus Infections:

J's NOSE DROPS --- a Naturopathic physician gave me these once and these drops actually worked for me. I always tried the saline drops, but that wasn't enough. The nose drops can be purchased online and they are easy to use. The ingredients in the drops (in case you may be allergic) are organic borates, sea water, alcohol, irish moss extract, echidnae, calendula, golden seal, marigold, iodine, methylene blue and flavored with pine oils.
try taking one tablet first to make sure that you aren't allergic to any of the ingredients.

NEILMED SINUS RINSE - You can purchase at Walgreens for around $12.00. It is easy to use and very effective for preventing and sometimes even treating sinus infections.

URI:

CAYENNE PEPPER (liquid drops) --- A Naturopathic physician taught me this trick. You can purchase the drops either online or at a local health food store. OK... they don't taste great in your water, but they have killed every URI or bronchitis infection that I've had. After years of being on antibiotics, I was so happy to find out that I had another option. I just add a few drops to my water when I have either one of these illnesses and drink tons of water throughout the day. I told a physician that I used to work with about this trick and she told me that it makes since since cayenne pepper is a natural dilator. Cayenne pepper also works on sinus infections.

http://www.medhelp.org/user_journals/show/3418?personal_page_id=1064

________________________________________________________________

Considerations to help boost the immune system :

Host Defense --- "Host Defense® has been shown to increase human Natural Killer (NK) Cell activity by up to 300%."

http://www.webvitamins.com/product.aspx?id=19505

Olive Leaf Extract (I've purchased the drops)  --- "Researchers found that Olive Leaf extract has the ability to contain viral infections and their spread by inactivating the virus through an ability to directly penetrate infected cells and stop the virus multiplying. It has proven effective in helping control various fungi, yeast and initial bacterial infections."

Transfer Factor for CFS --- "At present Transfer Factor is one of the most promising supplements for CFS."

http://www.nutritional-healing.com.au/content/articles-content.php?heading=Transfer%20Factor%20for%20Chronic%20Fatigue%20Syndrome

[mamaluv430]

Hi:
I am responding to your post to CAEBV where you ask how she is treating her bronchitis and pneumonia because those are my daughter's primary illnesses which we are worried about. She has been put on antibiotics (Levofloxacin, I believe) twice in the last four months. One of her worries with this is she works out three times a week rigorously and the medication cautions not to due to the possibility of torn ligaments.
I am, therefore, very curious about other treatments for the infections without antibiotics.

I don't know how to post a personal, confidential message on this board. Could you tell me as I want to request an article reprint from you. Have a great Sunday, PlateletGal and all others.

[PlateletGal]

"Now I get colds and other things at least once every other month and have had serious issues such as bronchitis(several times) and pneumonia."

That is what happened to me after a severe case of mono when I was a teenager. One thing I can tell you is that when your CFS is at its worse... you will no longer have symptoms of infections. I mean your CFS symptoms will get worse... but you won't have typical symptoms of a cold or flu virus.

How are you treating your infections ? I ask only because I found a Naturopathic physician who taught me how to knock out sinus & upper respiratory infections without using antibiotics.

[CAEBV]

I wish your daughter well with her move.  There are a lot of stressful situations which can't be avoided.  The main thing is knowing what triggers the reaction so you have a jump start on the situation in the future.  Your daughter probably felt some of the symptoms of EBV before she collapsed with pneumonia.  But, EBV doesn't usually show too many outward signs, so unless the person tells you what they are feeling you'd usually never notice the difference.  That is why a lot of poor doctors turn patients away and make them feel like it is all in their head.

Another thing you might want checked out are her Vitamin D levels.  In a lot of cases.. EBV patients have severely low Vitamin D levels.  This isn't the cause of it per say, but it can compound the problem with more symptoms.

EBV does cause problems with the immune system for a lot of people.  For me, I try very hard not to be in the same house or office as anyone that is ill because I am very likely going to catch it.  Before EBV, I got sick maybe once every 2 years and nothing serious.  Now I get colds and other things at least once every other month and have had serious issues such as bronchitis(several times) and pneumonia.

[PlateletGal]

There is an IgG test for EBV testing and it sounds like that is what your physician had ordered on your daughter. A rising or high IgG antibody to the viral capsid antigen and negative antibody to EBNA after at least 4 weeks of illness is also strongly suggestive of primary infection.

http://www.cdc.gov/ncidod/diseases/ebv.htm

I would consider asking your daughter to call her physician and asking him if he ordered immunoglobulin testing on her. I know what the HLA B-27 test is...  but I'm not sure what the Psa (EA) IgG test is. I know the only PSA test I'm aware of is to rule out prostate cancer in men. However there may be another reason why he's ordering the test.

Info on immunoglobulins:


http://en.wikipedia.org/wiki/Antibodies

http://www.lymphomation.org/tests-immunoglobulins.htm

[mamaluv430]

Hi:  I keep thinking about your comment that without immunoglobulin tests, a doctor can't diagnose immune deficiency. I am totally ignorant about the test results meanings. As I wrote, she showed an lgG to be 1:540 where normal is 1:10 and Early AntigenCea
Histocompatibility antigen test
Hla-b27 antigen
Psa (EA) IgG 1:40  where 1:10 is normal .  Is the IgG an immunoglobulin result? It seems like the right letters. I may be totally stupid here. I'm trying to make sense of this.
The doctor went over the results but quickly and we were stunned by his references to these results being possible indicators of MS, lupus, and rheumatoid arthritis in the future.
Thanks.

[PlateletGal]

Without having immunoglobins done, I don't think your daughter's physician can diagnose her with an immune deficiency. In CFS patients, we have immune dysfunction.

[mamaluv430]

I don't know the answer to the immunoglobulin test question. The test report reads"
Epstein-Barr Virus Evaluator.  There is not a section which says anything about immunoglobulin.  She is getting immunoglobulin shots every three weeks for three months and then once a month following that, possibly for life.  

[mamaluv430]

Thank you for your response. I am sending it to my daughter who is involved in moving today. Recurrent EBV, interesting. It is interesting that you mentioned stress. This last bout of pneumonia and then bronchitis followed a very painful (I know, they all are) breakup of a long standing romantic relationship. It was a shock to all of us. She didn't miss a day of work until she collapsed with pneumonia.

I was very impressed with your advice to always believe her when she says something is wrong. She does seem to have a very good sense of when an illness is serious. There have been two times now when I thought she just needed to take her medicine and rest in bed but she said, Mom, I need to go to the Emergency Room. She was very right both times.  I am sorry that you have not had the support of your family. Denial is a powerful thing and it is very frightening to a parent or spouse to realize that an illness is serious.  I will take your advice to heart. You are very wise to turn to this community for support as there seem to be some wonderful people here.
Thanks again.

[CAEBV]

I'm also 25, like your daughter.  I have CAEBV which is Chronic Active Epstein-Barr Virus.  What you've described seems to be recurrent EBV, which is a lot better than CAEBV, but still... not something you want to have.  I have never heard of it called EVB-MAIDS.  But anyways, almost 90% of the populace has some form of EBV.  In most people EBV is dormant and remains that way indefinitely.  Then there are of course the recurrent cases and the chronic cases.  There are usually certain triggers to the events in recurrent cases.  Stress is one of the biggest factors that seems to cause recurrence. Foods can also cause recurrence.  Too much sugars, milk, red meats, alcohol, caffeine, etc.  You should try to examine what was going on with her and her surroundings before these recurrences happened.  Everything can seem fine on the outside and then too much stress or whatever else builds up and triggers it.

Technically there is no known cure.  Right now there are just a lot of studies and tests and researches being done.  The reason it is so hard to figure out this virus is because it has so many varied affects and symptoms on different people.  A lot of doctors will tell you that they can only treat the symptoms and not the actual EBV.

I can't really help with the numbers.  Except to tell you that the virus EBV produces a lot of different antigens during its active phase and only a few when inactive.  Then I can give you this link which explains the different EBV antigens.

http://www.brown.edu/Courses/Bio_160/Projects2000/Herpes/EBV/EBV-Immunology.html

The major thing is always believing her when she tells you something is wrong.  Be supportive.  EBV is not taken as seriously as it should be by a lot of people and it is mostly because its hard to understand CAEBV or recurrent EBV unless you've been through it yourself.  I've had CAEBV for about 10 years now, and through that time of feeling the symptoms every day... I've become very good at pretending.  I try to pretend I don't feel sick, just to get myself through the day.  So, even though I have the proof of doctors, my family refuses to believe anything is wrong with me.  That, on top of having CAEBV... is one of the worst feelings in the world.  I pray that your daughter is lucky enough not to have to go through that.

If your daughter or yourself wish to discuss this more, the door is always open.

[PlateletGal]

Hi ! Do you know if your daughter's physician order immunoglobin testing or is he diagnosing your daughter on her EBV levels alone ?