CFS from mono?

Posted , 3 users are following.

Hey guys so I’m 14 years old, got mono about 6 months ago. I was diagnosed with in in late January.  

Throughout February, March, and April I was healing just fine, felt about 70% healthy in May. 

I thought I just had a normal case of mono, but then in late May everything came crashing down, I felt MUCH  worse/lower than had been feeling. 

At first, I tried not to panic and thought it was just a normal setback/relapse of mono. 

But over the the next 3 months so far, (June, July, August) it has just been getting lower and lower and worse. I feel worse than I EVER have so far, and I’m really worried it’s CFS as I shouldn’t be feeling this bad after so much progress before but all that progress just went to waste.

My symptoms right now mostly are the fatigue, (the biggest one right now) brain fog, joint problems, and headaches. And stress, anxiety and depression. 

Before the initial crash in late May, my only symptom was a bit of fatigue, but I only just couldn’t do strenuous stuff then but I felt about 70% healthy back then. 

Now I’m so worried it’s not mono anymore, it just feels like it’s not mono. In the first 3 months of having mono it felt mono-like or virus like, but now it feels different and much worse. It feels impossible to get back on track to how I was in April or beginning of May. 

Wondering if any of you guys got CFS from mono, and I wonder how it happened for you guys and how it developed. 

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  • Posted

    My son is your age and after a year is appearing to be almost completely better. If you are in the US, I suggest you try for an appointment with Dr. Susan Levine in New York City. 
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    • Posted

      Hey Mary, 

      Oh thanks for the recommendation, but that would be super hard to go see a doctor in New York because I’m all the way in Cali haha. 

      I wouldn’t be worried about cfs, but things have gotten so bad, and it seems like I just can’t come out of how low I am. 

      At month 6 feeling much worse than month 1, and no improving too. 

      How did things go for your son? Did he gradually improve the whole time? Any setbacks or anything? 

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    • Posted

      Hi. He improved a good amount, slowly, when I changed his diet.

      The greatest improvement was when he started taking acyclovir, an antiviral pharmaceutical, and another medicine called LDN, low dose naltrexone. 

      Stanford is very good at CFS. I would go there if I were you. I would also seek out a CFS specialist since most medical practitioners (allopathic or alternative) really do not understand the illness. 

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    • Posted

      Hi, and yes Stanford is good. My doctor is having lots of trouble getting me there though! He has arranged meeting with a specialist in LA. 

      In the first 3 months I improved so well, then I crashed down,  and after the crash the next 3 months were just decline. And still it is declining with no improvement!

      Do you guys think this is normal for mono? Or do you think I am stuck with cfs😢? 

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  • Posted

    Hi. First thing I'd say is that it's perfectly normal in a case of mononucleosis to feel absolutely dreadful for a seeming eternity. If anything is odd, it's that you didn't feel that bad earlier on.

    My advice would be to stay in contact with your doctor (preferably the same one each time if at all possible). Yes, cfs can follow on from mono but you don't need to be worrying about that. It's highly unlikely that someone of your age would end up in a very long term cfs situation.

    Just be patient (easy to say I know) and take everything easy. Rest, rest and more rest. Eat healthy and drink lots. J.

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    • Posted

      Hi James,

      Thank you for the advice, and my doctor has been doing blood tests. He honestly doesn’t know why it got so much worse than how it was. 

      Oh and even if it is unlikely for it most teens to get it, it can happen. And because of how things are going now, being so much worse than before, I am so worried it is. 

      It feels different, but WAY worse than the first 3 months. Back then I was on a good road of improvement, now everything has sunk SO much lower than before, with no improvement, just decline. 

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  • Posted

    Gosh my heart breaks for you. you are too young to have to deal with this. But there is hope for you with possible antivirals if you catch it now. there is a site on the internet buy dr. Martin Lerner, who had cfs himself and cured many people especially the ones with mono. He is now gone but has left some information on his website. I cannot post it because this site won't let me. but do take lots of vitamins and eat healthy. It does help especially magnesium but don't take too much. best of luck to you. you may possibly contact dr. Levine through correspondence just to get some information to help you?. my CFS started with a bad virus but I'm not sure if it was mono at that time because I think I tested negative but I was going through a lot of stress also. But I was exposed to mono the Epstein bar virus at some point my life because I have a high titre in my lab test. I also recieved a flu shot b4 all this happened. So it may hsve been that that started this all! There is also a facebook page called solve mecfs initiative which is helpful. They did a survey and many people had started with Epstein Barr virus -mono. Good luck sweetie!

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    • Posted

      Tracy, I agree with everything you said. My son was sick for a year. He missed 8th grade. Seeing him this way was the hardest thing in my life. 
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    • Posted

      Hi Tracy,

      Thank you for the help and support. It’s so heartbreaking for me because I had so many goals and dreams that I wanted to do in life and now they all got taken away from me😢. 

      Does what’s going on sound like CFS to you? 

      Because to me my sickness doesn’t feel virus-like anymore, if thy makes any sense. It used to be steady improvement every month, then it all crashed down and now I’m only seeing decline and no improvement. 

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    • Posted

      Young boy, the theory is that for some reason old viruses in your body “reactivate.” I have seen the antivirals help my son go to seemingly normal. I’m a true believer in that theory. Are your parents supportive? Please push them to take you to a cfs specialist like Dr. Levine. I’ll go look up the names of the California specialists. 
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    • Posted

      Oh thank you for the list. We have a appointment with a rheumatologist in LA, and we are trying to get one with Stanford. 

      Did your son have mono? Or CFS? Just wondering. 

      Also wondering if what I’m going through is mono or CFS? 

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    • Posted

      It depends on the doctor what they label it. I would head to a “cfs” specialist. That’s the only doctor that will truly understand, in my opinion. I even took my son to a biomedical clinic in Switzerland. They didn’t understand. 
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    • Posted

      You will get better. Your goals and dreams may take longer to get to but they will only happen if you learn to pace yourself. Meaning when you have a good day, do not overdo it. Its so hard for me becuz i have so much i want to get done. But ive learned over the years. I still have dreams of owning a horse! And to have a cabin in the woods. 😁. You must watch the movie Unrest may be on youtube or netflix. Jennifer did have help with antivirals but i think she may have overdid it on occasion and relapsed. But she has other illnesses also like myesthenia gravis. I also lived in Cali when i became ill , san Diego. Another dream that came to a hault. Had to move to Indiana when had children- for help! But im thankful for being able to have experienced beautiful cali.

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    • Posted

      I can't imagine! Thankful he is better! I pray my daughters, age 18 and 23 , dont ever get it as you hear of that happening. Makes you wonder if they catch the virus or if it is hereditary. Take care!

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    • Posted

      Thanks for the great words Tracy. 

      Hey how did you cfs develop? Did you heal from the original virus that you had? Or did it just not improve and keep getting worse? 

      Wondering because I had so much progress before I crashed, and then it keeps going downhill! I’m so worried I’m stuck with cfs. Even if some people say cfs in teens is rare, the way things are going for me makes me worry so much that it’s cfs. 

      Oh that’s cool that you want to own a horse! Where I’m from, we have ranches near town. So many horses and cows and stuff haha. 

      I had dreams of playing college basketball and becoming a sports medic for an NBA team. But how am I supposed to go to school like this? Or keep good grades like this? 

      I was a elite athlete and would train everyday during the summer for hours, but now it’s heartbreaking just looking at my basketball hoop outside just knowing how my whole life fell apart in just 1 year😔. 

      My 7th grade year I was such a big dreamer, all I could think about was owning the nicest cars and wearing a bunch of diamond chains and rings and stuff lol. And now I look back thinking I never appreciated just being able to go out and sprint and have fun and go to school enough. 

      Now all I want is just to be healthy and active again. And just to be able to enjoy high school and live life how everybody deserves to live it.

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    • Posted

      Hi. Yes, it has to be prescribed by a doctor. Dr. Levine is an infectious disease doctor. You should have blood tests to find out what vitamins and minerals you might be low on. You can sometimes use supplements and other times use foods to get more of these vitamins and minerals. If you get blood tests done and you then tell me what you are low in, I may be able to give you advice based on what I gave my son. For example, local bee pollen for the b vitamins (except b12), etc. 
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    • Posted

      Oh I have done blood panels and stuff, so far my doctor has not been able to find anything I’m low on. So far the only thing we had found was mono in late January which improved up to 70% healthy but then crashed and now still getting worse.

      We are trying to arrange something with an infectious disease specialist.

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    • Posted

      The infectious disease specialist is somewhere in California though, not sure excactly where but my doctor still has to contact him and stuff.
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    • Posted

      Young, a cfs  specialist  knows exactly what to look for in your blood that’s why it is so important to go to a cfs specialist.  We wasted a lot of time, money and effort on many many doctors but most do not understand what to look for and how to cure Cfs.  One of my lessons learned what is the best results came from a CFS specialist .  We happen to see an infectious disease pediatric doctor at the very beginning of the illness .  She wasn’t very helpful to us. In fact she harmed us by insisting my son could go back to school and should go back as soon as possible.  We almost got in very big trouble with the school because my son could not go back to school due to his illness. He was way too sick .  Luckily,  at that same time we found a doctor at Children’s Hospital Philadelphia to write a note for my son saying he could not go back to school for a while . 
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    • Posted

      Sorry, I was dictating into my phone so some of the above note might not be completely understandable!
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    • Posted

      Ohh i see. Thank you for the advice. I hope I can find a Cfs specialist. 

      My pediatrician set up an appointment with a specialist in Children’s hospital LA, but he says that it’s a chronic fatigue specialist, and he says a rheumatologist and chronic fatigue specialist is the same thing haha.

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    • Posted

      No. He’s just reading google which says it’s diagnosed by a Rheuhmatologist.  Take a look at the list I sent if you do not get help from this doctor. Knowledgeable doctors on cfs are very difficult to locate. 
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