Treatment for chronic epstein barr

Posted by cummings3 @cummings3, Jan 23, 2017

My son has been suffering with this for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.

@suewilliams64

I feel your pain. It’s beyond frustrating and had EBV on and off the last 2 years. ID doctor told me ‘nothing she could do’
I’m responding because I have gotten massive relief from two things. I started a diet protocol with Anthony William to kill off all EBV virus. Plus I started Asea redox molecules which finally had brought my energy back after 2 years. Not the version on amazon that is questionable. My girlfriend sent me a case from Asea Global. It’s made all the difference. If you are interested for your son just let me know.
God Bless

Jump to this post

Hello Sue. Wow yeah reading Anthony Williams book is how I found I might have EBV. I T\also had been tested
( thoroughly because I'm also a childhood cancer survivor) for 20+ years and I was apparently ok or 'just getting older' ( love that one). I had to order my doctor to have my blood antibodies tested here so I could finally valid my suspiscon.
So yes I'm eating healthy, lots of natural supplements – I love using the 'healing foods an herbs' list to create my own recipes. What is is/are Asea redox molecules?
Molly

REPLY

@suewilliams64 Mayo Connect is open to many traditional and supportive alternative medicine therapies. That said, it is very important to be sure recommended products have shown effectiveness in impartial testing.

Can you provide any independent sources that support use of ASEA Redox, or certify the safety of the ingredients ? Everything I find leads directly back to their commercial websites.

Sue

REPLY
@sueinmn

@suewilliams64 Mayo Connect is open to many traditional and supportive alternative medicine therapies. That said, it is very important to be sure recommended products have shown effectiveness in impartial testing.

Can you provide any independent sources that support use of ASEA Redox, or certify the safety of the ingredients ? Everything I find leads directly back to their commercial websites.

Sue

Jump to this post

Hi Sue;

As I only just started the product a month ago, I’m still plowing my way through the hundreds of scientific research studies they have done to date. Over 400 studies apparently. I printed off the certification documents and would be happy to email them to you. However I think jumping on a call/zoom with an MD whose an expert in the technology would be best.
All I know is that ‘I feel great’ and should have listened to my family friend two years ago when she started.

REPLY
@magbatt

Hi all –
I think my original post was edited out. Traditional medicine does not believe in cure. Not really cure, but extremely effective "containment" of EBV.
Astra Isatis (herbal combo) Lysine and Monolaurin. Give it 10 days.

I am 76 years old. I still ski, climb hills, work full time, and enjoy life. What a change from 10 years ago! I was virtually handicapped from decades of EBV reactivation. A wonderful teaching naturopathic doctor at Bastyr University took one
look at my old labs and said everyone had been misreading my ANA's —- I didn't have lupus, I had an EBV reactivation. I was at 3,533 on one my tests,
where I should have tested around 30. Astra Isatis is available on line, so is monolaurin, and lysine is available almost everywhere. Sad thing is that
even after ten years, my GP and other docs (one of whom ran the test for me as directed by the naturopath so my insurance would pay for it) still don't
acknowledge the EBV in anyway. It's always the elephant in the room. They run their own tests, which always come back negative! I've taken this
protocol for 10 years and will take it the rest of my life. Do NOT take anything with arginine in it! While it's wonderful for temporary energy, my understanding
is that it dissolves the "capsule" that contains the virus and allows it to reactivate. Over simplification, I'm sure – but be careful.

The lysine is cheap. I take 1,000 mg a day. Astra Isatis in not cheap – about $50 for 270 tablets and I take 2 twice a day. Momolaurin around $40 and I take it twice a day. I can get by without the monolaurin once I get the virus in remission, but if I think it's acting up again, I have to take it faithfully. Insurance pays for none of it, but it's worth it's weight in gold to feel good. Good luck to all!

Jump to this post

Thank you for this information. I'm newly diagnosed

REPLY

I have had Hashimoto's Thyroiditis for many years. A little over four years ago I was diagnosed with EBV. It has since been diagnosed as Chronic Active EBV. I am 73 years old, female. It has never gone dormant. Has always been active, and my numbers are very high. My antibodies are greater than 750. Have also had many, many health issues. Would a stem cell transplant help? We live in a rural area in Hillsboro, Tn. therefore there are no specialists close to us. My doctor has been in touch with two in nearby cities, but they do not treat what I have. Also, what is the life expectancy? Thanks for any info.

REPLY
@sfdm13

I have had Hashimoto's Thyroiditis for many years. A little over four years ago I was diagnosed with EBV. It has since been diagnosed as Chronic Active EBV. I am 73 years old, female. It has never gone dormant. Has always been active, and my numbers are very high. My antibodies are greater than 750. Have also had many, many health issues. Would a stem cell transplant help? We live in a rural area in Hillsboro, Tn. therefore there are no specialists close to us. My doctor has been in touch with two in nearby cities, but they do not treat what I have. Also, what is the life expectancy? Thanks for any info.

Jump to this post

Hi, @sfdm13 Welcome to Mayo Clinic Connect! In this community based forum, we’re not medical professionals so we can’t diagnose health problems or prescribe treatments. We’re members just like you who share personal experiences and insights to help find answers, give suggestions and offer encouragement.

Epstein-Barre Virus is another of those pesky, tiny viruses that can cause a world hurt… It’s so prevalent, that from what I’m reading, 95% of the world’s population carry this virus. However, most people can have the virus but their immune system keeps it in check. It’s the underlying root-cause for mononucleosis and can pose chronic issues for anyone with a weakened immune system.

You also have Hashimoto’s thyroiditis, an autoimmune disorder in which your immune system creates antibodies that damage your thyroid gland. The symptoms from both of those diseases look like they overlap and have to be exhausting for you! No wonder you’re trying everything you can to find a solution! I’m so sorry for what you’re having to go through.

I had a stem cell transplant for an aggressive leukemia and EBV is one of the most dangerous side effects of the transplant should it become active. I’ve been doing a bit of research since seeing your question regarding the use of a SCT to treat EBV. And most articles are about treatment of the EBV-Post transplant for people with either hard tissue transplants or bone marrow.
There were only 2 research papers I could find that mentioned SCT as a treatment for EBV but then I couldn’t find any current information; one dated 2002, another 2009. What I can tell you is that a SCT is arduous and not without its own risks and side effects.

Where did you hear about using SCT to treat EBV? Are you being given any medications for EPV symptoms? Here is a link to our EBV discussion group.
https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/
Are you under current treatments for Hashimoto’s? We have several discussions in the Autoimmune disease group regarding Hashimoto’s Thyroiditis and treatments.
https://connect.mayoclinic.org/discussion/hypothyroidism-vs-hashimotos/
https://www.mayoclinic.org/diseases-conditions/hashimotos-disease/symptoms-causes/syc-20351855

REPLY
@justamom

Both of my sons were diagnosed with CEBV and CFS/ME. It permanently changed the paths of their lives. The sadness is beyond words. I'm thankful to have found this group that have been through the same life altering issues. One thing I would like to mention to each of you suffering from this debilitating illness is the possibility of Lyme Disease and co-infections. It mimics symptoms so closely that my son has gone undiagnosed properly for years. While he has been 100% positive for EBV with back to back recurrences along with other infections like many of you, he now is still dealing with the virus on top of Lyme and several co-infections. I now know why he was never improving. Instead, he has gotten far worse.
I'm mentioning this because it may help someone or save someone from further suffering if by chance they too, have more than EBV. The standard testing is highly inaccurate and it caused years of life to be lost. There is still a long road ahead. Igenex Lab finally was the far more accurate test and it has helped many people. The EBV and Bartonella were positive. Others were borderline and yet he had every symptom. If you look up Lyme Disease and find information showing that you may have symptoms, please refer to the ILADS website for detailed information and find a LLMD ( Lyme Literate Medical Doctor). Also, if you or your loved one tests negative per the most accurate lab testing and you need a doctor specializing in CFS/ME, there is a website entitled CFIDS that will also help you to find a doctor that actually understands CEBV and CFS/ME that WILL listen and help! These illnesses both can damage the organs and the autonomic nervous system as well. That is a fact. Joint pain, memory issues, sudden drops in blood pressure with a high pulse rate happen. Spleen, liver, pancreatic inflammation can occur. Seeking a physician trained in specifically these illnesses is your best bet! I've found infectious disease practitioners that do not at all understand either one if they have not been formally educated with CME in Lyme Disease or CFS/ME. There are pediatric and adult doctors that treat both and they are MD's. I hope this helps someone. Keep hope and know you are not alone and no one asks for nor deserves to suffer any of these illnesses. Both of my sons missed their highschool memories and so much more. Thank you to all who have shared such great information here. I've learned a great deal. Blessings and wishes for restored health and peace to all!

Jump to this post

I realize this is an older post. But when I go to the CFIDS website, I see no mention of finding an appropriate provider. Can you please post a link to that information? Thank you.

REPLY
@clutch

I realize this is an older post. But when I go to the CFIDS website, I see no mention of finding an appropriate provider. Can you please post a link to that information? Thank you.

Jump to this post

Hello @clutch. Here is some information on CFS and how you can request an appointment at Mayo Clinic, if that is helpful. I am not sure of the other website you had reference.

– Chronic Fatigue Syndrome:
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
Have you sought care for this before?

REPLY
@amandajro

Hello @clutch. Here is some information on CFS and how you can request an appointment at Mayo Clinic, if that is helpful. I am not sure of the other website you had reference.

– Chronic Fatigue Syndrome:
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
Have you sought care for this before?

Jump to this post

Yes, I have sought treatment locally, at Duke, and at Mayo Clinic in Jacksonville. I was turned downed at Mayo. Ir was like the minute I uttered "chronic fatigue ", it was an immediate "No".

REPLY
@clutch

Yes, I have sought treatment locally, at Duke, and at Mayo Clinic in Jacksonville. I was turned downed at Mayo. Ir was like the minute I uttered "chronic fatigue ", it was an immediate "No".

Jump to this post

So so sorry about your CFS. I had mono twice last year and was left with chronic CFS! I’m 56. I tried everything and after 30 blood draws and 25 doc appointments with infectious disease etc they came up with ZIP all. Nothing. My girlfriend got me on Asea redox ( through the company in Utah not dubious Amazon or eBay) and I started it two months ago! Huge difference in my energy and a slow steady improvement every single day. Also has helped with sleep and mental clarity. They have Md’s on call and 400 test studies continue to show its efficacy. It’s been a life saver!! The doctors have no answers and piling on meds only keeps you down along with a burdened liver. I read Anthony William and followed his protocol in cleanse to heal! Also a huge help. I hope this helps and message me if you have questions.

REPLY
Please sign in or register to post a reply.