Worried

Hi Hayden,

So sorry to hear about the awful time your son has been going through, it must be so hard for you to deal with I know and I just want you to know that there is hope and recovery with glandular fever - it causes such havoc and awful symptoms, the brain fog I really hope will pass for your son, I have seen so many folk on here who have had that and it settled down and went away completely, so just hang in there and try and remove your son from stress as much as possible (I know it's hard when the virus causes stress in itself).

Craig

Hi how has your son been doing? What month/week is he on is he doing any better?

He is miraculously doing better. Got mono last September, but the mono turned into something 10 times worse by end of January. He was terrible until we started high dose Vitamin C treatments. He is doing much better- fatigue is completely gone, but still has the sore throat and brain fog.

What did the mono turn into if you dont mind if I ask? I'm still struggling very bad my back has really been hurting me feels like my spine which is very scary I still don't feel myself I'm just lost and confused I want to give up I just really don't care no more at this point I'm just getting worse no better I have no hope I feel like I know there is something more serious going on I have NEVER felt this bad In my life and it's only getting worse I can't even look in the mirror cause I don't even know who I am anymore!😔sorry for being so negative I'm just so very down and lost ...

What did the mono turn into if you dont mind if I ask? I'm still struggling very bad my back has really been hurting me feels like my spine which is very scary I still don't feel myself I'm just lost and confused I want to give up I just really don't care no more at this point I'm just getting worse no better I have no hope I feel like I know there is something more serious going on I have NEVER felt this bad In my life and it's only getting worse I can't even look in the mirror cause I don't even know who I am anymore!😔sorry for being so negative I'm just so very down and lost ...

What did the mono turn into if you dont mind if I ask? I'm still struggling very bad my back has really been hurting me feels like my spine which is very scary I still don't feel myself I'm just lost and confused I want to give up I just really don't care no more at this point I'm just getting worse no better I have no hope I feel like I know there is something more serious going on I have NEVER felt this bad In my life and it's only getting worse I can't even look in the mirror cause I don't even know who I am anymore!😔sorry for being so negative I'm just so very down and lost ...

Hi Emma,

My back bothered me too, actually muscle aches everywhere, I know this is so hard for you. Mono truly makes you feel as you never have before, I remember telling Craig I was afraid it was something else too, This virus is a long road, I am sorry you have to go through it. 

 

Really pleased to hear that your son has been doing much better Hayden, that is really great and hope that he continues to improve and go in the right direction - trusting God with that and that he will.

Craig

Hey Emma,

Just a word of encouragement for today - you're not giving up at all, sometimes we just need rest when so physically and mentally tired so remember it's okay to rest and realise that you can't work all this out in your head, just trust that God is looking after you and that let Him take the strain and weight off your shoulders - I know that's easy to say and hard to do when feeling in such pain and worry - but it's so important for you to get some rest time and to just know that time is a great healer and in most cases time is thing thing that is needed for recovery - remember it took me and most other guys on here a few more months than where you are now to get fully better - that doesn't mean to say you are going to feel this way for a lot longer, it just means that it's normal for sometimes it to go on longer than we hope or like and then make a full recovery - take heart from this and remember the stage you are in just now is the worst and the intensity lessens as time goes on - it really does and you REALLY ARE going to get better Emma, I truly truly believe that!!

Thinking of you still and remember some relaxation and breathing exercises each day can be helpful too.

Craig

Hayden (my son) tested positive for mono last October. He was pretty much fine by end of December. Then by January, the same symptoms came back, but 10 times worse (fatigue, sore throat, brain fog).

He keeps mentioning how he can't go on like this... It is gut wrenching to see someone in that condition. I feel so much for you and can totally understand how difficult and hopeless you must feel. What I referred to in my last post is that when Hayden tested positive for mono, he also tested positive for Epstein Barr virus. He since technically recovered from the mono, but now is diagnosed with Chronic Epstein Barr Virus. Most people recover from mono within a few months, but then there are the very small percentage whose symptoms do not go away quickly, such as my son. Craig is completely right. Hayden tested positive for EBV last fall, then tested negative (had anti-bodies), and then tested positive with very high levels of EBV. 

Yes, Hayden is staying away from sugar, dairy, and wheat (since the Epstein Barr virus feeds on these).

We have met people at the IV clinic who are being treated for EBV virus, as well, and have EXACTLY the same symptoms everyone is describing in this forum. Most importantly, everyone does heal, and you just have to be patient. I can't imagine how hard it must be, but I know, since I see first hand how hard it is on my son. The worst for him is the brain fog- he says he can't think, can't remember, and he feels if his brain is in a constant fog and that he is sort of "not there" at all, and that he feels as if he is a different person, not himself. It must feel pretty scary.

Craig, can you please remind us how long you had this illness, and how it resolved for you? You are a great source of inspiration for all of us.

Thanks, Grace (Hayden's mom)

Hi Hayden,

My daughter and I too. I know what he means when he says he cant go on like this, the best way to describe it is like having your worst flu day for a year, you cant escape the miserable feeling, you are really trapped in your own body. Rest, vitamins and anti inflammatories, helped me somewhat. I actually drank a sports drink on my worst days and this also helped.

Anything to pass the time, books,music,movies,computer, video games ect. the depressed exhausted feeling that goes along with feeling sick is the worst.

Hi Grace,

Where did you find the information for the IV clinic? my daughter is having a rough time and hoping this may help. I was sick for eleven months and she has been sick longer than that.

We live in Los Angeles, so I googled "Los Angeles Epstein Barr Treatment Centers". There was one that seemed especially promising. It is a Naturopathic clinic, where they offer a wide range of IV treatments, depending on the condition. In addition to the IV's, diet plays a major role in the treatment, as well as various vitamins and supplements. Hayden did 6 treatments of 25 g high dose vitamin C. This mostly wiped out all his fatigue, night sweats, and reduced his headaches. The doctor has now changed his protocol to Ozone Therapy IV 3x/week, plus Photoluminescence (UBI) IV once/week, and continuing high dose vitamin C IV once/week. Please look up these therapies online. We have met a lot of patients who have gotten much better or completely healed within weeks after these IV's. Hayden still has really bad brain fog and sore throat. I will keep you posted as to how he is feeling. Please note that these are naturopathic therapies, and may not work for everyone (but of course, I am hoping they do!)

Hi Grace,

I really hope Hayden is feeling much better soon, it sounds like she has been through such a hard time. It took me about 9-10 months before I seen a real turning point and started to feel fully better, that doesn't mean to say it will be the same for Hayden though the younger you are the shorter the recovery period can be I believe.

It was just a time factor for me, the intensity did lessen as the months went on, I had a few kind of relapse weeks and spells but things did smooth out and I believe this will be the same for Hayden too. Really thinking about you and praying for a full and strong recovery for her, taking vitamins and herbs did really help me, a good strong multi-vitamin per day, high doses of Vitamin C (1000mg-3000mg per day), B complex (for energy levels) and immune boosting herbs like echinicea and siberian ginseng. I know if Hayden is younger might be reluctant to take so many supplements, so certainly if she can get a good multi-vitamin per day at least that would be really good.

Thinking of you and thanks for the kind words too.

Craig

Were you diagnosed with mono in the beginning and then it turned into Epstein Barr, or was it just mono the whole time?

Hi Hayden,

A few weeks after I started feeling ill I had a blood test done, a monospot I think they call it here, and that is the blood tests that shows the EBV (Epstein Barr) virus. EBV is the virus that causes mono, so in my mind it is the same thing really, with EBV being the name of the virus and mono / glandular fever being the name of the illness it causes.

Hoping things settle for you and that you are feeing better - thinking about you.

Craig

That sounds promising, Thank you.

 

Really hoping that this treatment works well for Hayden, Grace - good luck and thinking about you both.

Craig

Just wanted to give everyone an update- Slowly getting better, but very slowly. Had one good day last week, where the brain fog seemed to lift a bit, and head felt clearer, but otherwise, head still feeling very cloudy, and still sore throat. Starting to try to read more, whereas was not able to read much before. Days are very boring- the feeling of the brain damage and like it will never be back to normal.

Craig, did you experience brain fog? Did your brain ever come "back"?

Did you have any relapses ever since you got better? How long have you been better for?

Hi Hayden,

Yes I experienced some brain fog during the virus too, felt like i couldn't concentrate too well or that I wasn't quite with it at times, it was hard to explain. But it did return to normal as things got better, don't panic things will return to normal Hayden they really will. It is sometimes so frustratingly slow I know but you will get there. Have you tried taking supplements such as B complex, Co-enzyme Q10 and Gingko Biloba? They are all very good for brain function and brain fog, as well as the nervous system generally. Sometimes taking something like that can just the kind of boost you need when going through this horrible virus to level things out.

It was in the autumn of 2006 that I had mono, so over 10 years ago now. It took me a good 10 months to really start to see proper recovery progress, was so weary at the end of that but my body resilience and ability to do things and think clearly returned really well after that - a few wee relapse episodes in the first year or so after that, but generally since then have had no troubles and the same will be the case for you once you get through this awful initial period.

Thinking of you and really hoping this brain fog settles, and remember there is hope and there is full recovery from this virus - absolutely I believe you are going to get 100% better!! Truly I really believe that Hayden, hang in there!

Craig