CFS from mono?

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? 

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. 

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😢? 

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. 

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. 

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. 

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. 

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? 

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. 

What’s the difference between a cfs specialist and a rheumatologist? I thought they were the same. 

No. It’s not the same. I would use the list I put here. 

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.

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!

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.

Ohh okay. Where do you get the antivirals? Do you have to have it be prescribed by a doctor? 

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. 

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.

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

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 . 

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

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.

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.