Treatment Protocol Doctors who treat Epstein-Barr virus in UK and in US?

[Susana]

Hello everyone,
this is a wonderful resource, and I'm delighted to be able to post something here. Writing as a carer since my son is not able to go online very much, I have a question: does anyone reading this in the UK know about doctors who treat severe M.E as the result of Epstein-Barr viruses?
It's impossible to get Valtrex or Valcyte here in the UK. My son has tried acyclovir on two occasions without any success. If we were to consider coming to the US – hardly likely – but maybe, which consultants should we go to?
So two questions really – one about doctors in the UK, and one about the US.
Thank you very much, and good wishes to everybody!

 

[Tammy7]

Hi Susana..............just wanted to welcome you. Sorry about your son.............I am sure it is hard for you as a mom. I am also working on ridding my body of the EBV and am feeling better. Have not personally found a Dr. to work with. I am taking natural herbal anti-virals as well as other nutritional supplements. I don't have an answer right now as to your questions but if you would like me to share in the meantime what natural anti-virals I am taking until you can find a Dr............I would be happy to do so.

 

[Who Me?]

@Susana If you are interested in Valcyte, Valtrex or Famvir, you can get them. If you are interested, send me a PM and I will tell you how.

I will tell you Valcyte is mostly for CMV. I have been using Famvir and I know it has helped me when I had EBV like viral reactivations.

 

[RuthAnn]

@Susana, Steven Buhner writes books about dealing with viruses and bacteria herbally. A lot of his information is online. Here is a link to some of his information about how to deal with Epstein Barr Virus. Notice the title says mitochondrial damage, too. That's because the virus damages the mitochondria and that should be dealt with.



http://buhnerhealinglyme.com/symptoms/treating-ebv-and-mitochondria-damage/

 

[Who Me?]

@Susana I'm assuming your son has been tested for EBV and you know that is the cause?

I have nothing against herbs but give me drugs. Herbs never did anything for me, not like antivirals do.

Also, look into LDI. I know there are some people in the UK who are Skyping with a US doctor who is shipping the treatment. I am starting soon with CMV and EBV.

http://www.cortjohnson.org/forums/t...therapy-ldi-for-chronic-lyme.3704/#post-11645

 

[IrisRV]

INIM (Institute for Neuro Immune Medicine) doctors will treat herpesviral infections (EBV, CMV, HHV6, VZV) if they feel the evidence supports it. They go by a combination of labs and symptoms. They also will do a lot of other symptomatic treatments that can give a large quality of life improvement. I went from bedbound to working part-time. My daughter went from just about to drop out of college to fully functional.

In other words, they will treat what they find and they have enough experience to know what to look for.

The same is true of OMI (not sure what this acronym is for, Open Medicine something?). Both are excellent ME clinics which treat ME as a serious biomedical illness.

Sorry, I have some computer problems that prevent me from giving links. I hope someone can chime in with links.

Be aware that the US does not have a socialized medical system, so if you don't have US medical insurance you could find most US doctors out of your price range. You will almost certainly have to pay much more than you're used to paying for medical care in the UK. I suggest you ask for a ballpark estimate for the cost without health insurance before you go too far.

Valcyte is not used for EBV typically. The usual antivirals for EBV are Valtrex and Famvir.

 

[Susana]

Hi Susana..............just wanted to welcome you. Sorry about your son.............I am sure it is hard for you as a mom. I am also working on ridding my body of the EBV and am feeling better. Have not personally found a Dr. to work with. I am taking natural herbal anti-virals as well as other nutritional supplements. I don't have an answer right now as to your questions but if you would like me to share in the meantime what natural anti-virals I am taking until you can find a Dr............I would be happy to do so.

Thanks so much for your reply, Tammy. and for welcoming me.
Very glad to hear you're feeling better.
I would be happy to know what has helped you. Richard, my son, took artesumate for several months but without any improvement. Are you taking different herbal anti-virals to this particular one?

 

[Susana]

@Susana, Steven Buhner writes books about dealing with viruses and bacteria herbally. A lot of his information is online. Here is a link to some of his information about how to deal with Epstein Barr Virus. Notice the title says mitochondrial damage, too. That's because the virus damages the mitochondria and that should be dealt with.



http://buhnerhealinglyme.com/symptoms/treating-ebv-and-mitochondria-damage/

Thanks for this link, and for your reply, RuthAnn. I haven't heard of this practitioner so it's great to learn about someone new.
Will certainly look for his books.

 

[Susana]

@Susana I'm assuming your son has been tested for EBV and you know that is the cause?

I have nothing against herbs but give me drugs. Herbs never did anything for me, not like antivirals do.

Also, look into LDI. I know there are some people in the UK who are Skyping with a US doctor who is shipping the treatment. I am starting soon with CMV and EBV.

http://www.cortjohnson.org/forums/t...therapy-ldi-for-chronic-lyme.3704/#post-11645

It's a very valid question. Unfortunately my son was diagnosed with M.E. while at university in 1993. In 1997 he spent ten weeks at the National Hospital for Neurology and Neurosurgery in London, fatigued, bed bound, unable to sit up etc. With few ideas about ME, he began to progress. Back home he walked six times a day for up to half an hour, and began to get better. About 60% recovered. In 2003, he had a high fever which was eventually diagnosed as glandular fever, mono, a which showed on blood tests. Since when he's been unable to 'push through'. So yes, he has had Epstein Barr virus and his body has radically changed since . He thinks he's had two versions of M.E... So far, he hasn't had much joy from herbal treatments but there may be something we don't know about. Do you know the doctor who treats by Skype?

 

[Susana]

INIM (Institute for Neuro Immune Medicine) doctors will treat herpesviral infections (EBV, CMV, HHV6, VZV) if they feel the evidence supports it. They go by a combination of labs and symptoms. They also will do a lot of other symptomatic treatments that can give a large quality of life improvement. I went from bedbound to working part-time. My daughter went from just about to drop out of college to fully functional.

In other words, they will treat what they find and they have enough experience to know what to look for.

The same is true of OMI (not sure what this acronym is for, Open Medicine something?). Both are excellent ME clinics which treat ME as a serious biomedical illness.

Sorry, I have some computer problems that prevent me from giving links. I hope someone can chime in with links.

Be aware that the US does not have a socialized medical system, so if you don't have US medical insurance you could find most US doctors out of your price range. You will almost certainly have to pay much more than you're used to paying for medical care in the UK. I suggest you ask for a ballpark estimate for the cost without health insurance before you go too far.

Valcyte is not used for EBV typically. The usual antivirals for EBV are Valtrex and Famvir.

Thanks so much for your reply. I have a link to OMI and can surely find INIM if I search. It's good to know about reputable places. You're right about the cost of medical care, being either free or affordable in UK. But services for ME/CFS are rare in this country and still based on CBT Cognitive Behavioural Therapy and pacing. And anti-depressants.
Only one or two consultants have a better understanding.
But thank you, it's most heartening to get these replies from so many people!

 

[Tammy7]

Thanks so much for your reply, Tammy. and for welcoming me.
Very glad to hear you're feeling better.
I would be happy to know what has helped you. Richard, my son, took artesumate for several months but without any improvement. Are you taking different herbal anti-virals to this particular one?

The things I am taking against EBV are Cats Claw (anti-viral), Licorice rt liquid (anti-viral) L-lysine (anti-viral) Zinc (anti-viral) Vit.C, B12 (helps the CNS), Spirulina and barley grass juice powder. There are multiple reasons for these different supplements. What I have learned on my healing journey is that unfortunately my symptoms are not going to change in a timely or linear fashion. I will be on these anti-virals for at least a couple of years and will probably rotate with some other anti-virals. There will be and have been 3 steps up.......2 steps back kind of healing but looking back .....I can see how far I've come. I will be honest.............even though I saw glimpses of improvements early on.............it wasn't until the 6th month when I could say.............Ok this is really working. From talking to others that are taking some of the same anti-virals as I am as well as some additional herbal anti-virals .............some have said it took them several years to say that they really felt normal again. God give me patience! Learning from others..........I think the key is slow and steady and persistence.

Best wishes to you and your Son.

 

[Who Me?]

. Do you know the doctor who treats by Skype?

I only asked because if you don't have viruses then you don't need AV's.

I can't remember the doc who Skypes about the LDI. There is a facebook group LDI for Lyme and that is where people talk about it. You can join that group and get some info.

 

[IrisRV]

I can't remember the doc who Skypes about the LDI

Isn't it Vincent?

 

[Who Me?]

Vincent doesn't take patients outside of the US. I think there is a doc in NY that is treating some Brits. Mails them the antigens

 

[Susana]

I only asked because if you don't have viruses then you don't need AV's.

I can't remember the doc who Skypes about the LDI. There is a facebook group LDI for Lyme and that is where people talk about it. You can join that group and get some info.

Thank you, I agree. And thanks for the suggestion about Lyme.

 

[Who Me?]

Thank you, I agree. And thanks for the suggestion about Lyme.

@Susana LDI is used for many things, not just Lyme. I am getting it for CMV and EBV to start. Then we'll move on to mycoplasma. He will also be treating my psoriasis.

I did look at that Facebook page yesterday to see if someone mentioned the docs name but I wasn't able to find it and didn't want to post.

If you want me to ask I will, or you can join that page and look around. Remember, LDI is not just for Lyme.

 

[Susana]

There is no need for you to ask, I shall look myself.
Thanks for your reply, it's very interesting to see a different slant. I hope things improve for you!

 

[Prashanti]

Thank you all for the info. I have just begun Valtrex for EBV. However, it is wrecking havoc on my digestive system....not sure if I can take it for very much longer.
I'll talk to my Dr. first and also look into the herbs and supplements.
What is LDI?

 

[Who Me?]

@Prashanti i couldn't take valtrex either. Famvir works for me

@Remy posted this on LDI but it's used for more than Lyme. I just started it for cmv and EBV

The interview is awesome
http://www.cortjohnson.org/forums/t...therapy-ldi-for-chronic-lyme.3704/#post-11645