My son has been sleeping 14 to 16 hrs a day

[Hope_eternal]

the 3 bands on the lyme western blot may be diagnostic in themselves - see misuse of pass fail criteria above
or at the very least - good reason to see an actual LLMD

Thank you so much for all the info. I have been hearing much of what you write in terms of finding a good LLMD and diagnostics being more centered on symptoms. I think it’s worth us talking to a LLMD. Are you having any improvements with your treatment? I hope things are going well for you.

 

[Garz]

yes - i am responding to treatment - i was ill for over 5 years before appropriate treatment started - so its been a long journey - but i made progress once it as clear what i was dealing with - i am still in treatment - but around 70% recovered on the good days now

i used to be so fatigued i could only do the most basic things - like prepare food and wash - now i walk 3 miles at a fast clip each day and do two mini workouts with weights every day and am able to pursue other activities, socialise, support others with patient advocacy etc

depending on where abouts you are in the world - the forum i help moderate on my have suggestions or recommendations for LLMD's in your area

edit to update with this page at the CDC stating that the CDC criteria ( the one many labs have elected to use for political reasons - and as a result most doctors also continue to follow ) was not intended for clinical diagnostic purposes.

as the link explains - the CDC never intended this to be a criteria for diagnosing individual patients - it was instead supposed to be a super strict definition that would miss all but the most positive cases - so they could use this for disease surveillance at the national level. ie to help them understand if Lyme disease incidence was increasing or decreasing - rather than to measure the absolute number of cases.

https://ndc.services.cdc.gov/case-definitions/lyme-disease-2017/

Surveillance case definitions are not intended to be used by healthcare providers for making a clinical diagnosis or determining how to meet an individual patient’s health needs.

its all there in black and white - so any doctor worth their salt should be able to navigate this properly - but very few do

 

[Hope_eternal]

yes - i am responding to treatment - i was ill for over 5 years before appropriate treatment started - so its been a long journey - but i made progress once it as clear what i was dealing with - i am still in treatment - but around 70% recovered on the good days now

i used to be so fatigued i could only do the most basic things - like prepare food and wash - now i walk 3 miles at a fast clip each day and do two mini workouts with weights every day and am able to pursue other activities, socialise, support others with patient advocacy etc

This is wonderful to hear! I’m glad that you are improving. I hope our son will be one of the fortunate ones that gets better with treatment. I’m afraid to get my hopes up but all signs point to a real possibility lymes may be a factor. Thanks so much for your detailed responses. I’m eager to look through your forum and plan to do at least a little browsing tonight.,

 

[Booble]

Have you talked to the doctor who prescribed the Prozac?
He might need adjustment on those meds.
Is he also in treatment for depression or just the meds?

 

[Hope_eternal]

Have you talked to the doctor who prescribed the Prozac?
He might need adjustment on those meds.
Is he also in treatment for depression or just the meds?

Yes his doctor says to keep him on what he is on since his mental state is stable. This fatigue and sleep cycling started way before he was put on Prozac.

No he’s no longer getting therapy. 1, his sleep cycle is so messed up so any appt we make he never is awake for and 2. He says he’s fine mentally and doesn’t want therapy, Several months ago we had a therapist come to our home 2 times a week and he determined my son was stable and that his issues were physical fatigue.

 

[Booble]

Yes his doctor says to keep him on what he is on since his mental state is stable. This fatigue and sleep cycling started way before he was put on Prozac.

No he’s no longer getting therapy. 1, his sleep cycle is so messed up so any appt we make he never is awake for and 2. He says he’s fine mentally and doesn’t want therapy, Several months ago we had a therapist come to our home 2 times a week and he determined my son was stable and that his issues were physical fatigue.

I would get a second opinion on his dosage of Prozac.
That kind of fatigue and sleep cycle is way more common with depression than with CFS/ME.

I had a niece with a very, very similar situation when she was your son's age. All she could do was sleep.
Her grandmother (my mother) suggested depression but we all dismissed it because she was happy and giggly and smiley when she was not sleeping. Everyone, including professionals, saw her that way. She was very good at making everyone feel like she was fine mentally.

Fast forward to today. Now that she is grown she is better able to articulate what was going on back then.
If she had gone on appropriate meds and been treated by a good psychiatrist her life would be very different right now.

Editing to add: I'm not saying that's the case with your son. I'm just giving an example and food for thought.

 

[Hope_eternal]

had a niece with a very, very similar situation when she was your son's age. All she could do was sleep.

That’s the crux. He only sleeps like that when he uses up his energy reserves otherwise he is bedridden with never ending fatigue. He was in the prime of his life. Excited about being in college. Pursuing a chemistry degree was his dream. He was happy to be away on campus. 5 weeks in he was so tired he didn’t think he could finish up the semester. He came home for Fall break, rested and said he could go back. 1 week later he crashed so badly he could not get out of bed for 4 days. Slept for 14 to 16 hrs. Had to medically withdraw because his fatigue was so bad he couldn’t get out of bed. He has Crohn’s disease, cmv, EBV and possible lymes. I think there is more to his story than depression. I’m all for treating depression but we tried that for a year with no major improvement with his fatigue. In fact his fatigue got worse when he tried to do their suggested therapy. So idk, 🤷‍♀️ we are drowning in uncertainty here and no one we have seen has been able to get him better. The only thing that helped minutely was the valacyclovir. That brought him to be able to speak audibly. Before that he couldn’t even talk he was so exhausted. I’ve been open to changing meds but his treating doctor does not want to change them at this time.

 

[Booble]

That’s the crux. He only sleeps like that when he uses up his energy reserves otherwise he is bedridden with never ending fatigue. He was in the prime of his life. Excited about being in college. Pursuing a chemistry degree was his dream. He was happy to be away on campus. 5 weeks in he was so tired he didn’t think he could finish up the semester. He came home for Fall break, rested and said he could go back. 1 week later he crashed so badly he could not get out of bed for 4 days. Slept for 14 to 16 hrs. Had to medically withdraw because his fatigue was so bad he couldn’t get out of bed. He has Crohn’s disease, cmv, EBV and possible lymes. I think there is more to his story than depression. I’m all for treating depression but we tried that for a year with no major improvement with his fatigue. In fact his fatigue got worse when he tried to do their suggested therapy. So idk, 🤷‍♀️ we are drowning in uncertainty here and no one we have seen has been able to get him better. The only thing that helped minutely was the valacyclovir. That brought him to be able to speak audibly. Before that he couldn’t even talk he was so exhausted. I’ve been open to changing meds but his treating doctor does not want to change them at this time.

Such a hard situation.
I'm so sorry that you are dealing with this. Poor kid.
The uncertainty sure makes it even worse not knowing what to do.

I thought he was 15-17 age which is why I suggested the depression as that's a common age for the sleep disruption of depression.

If he is college age and based on what you describe here is going to be my best guess.
My guess is that he picked up a virus, got sick, had post virus fatigue, had shit tons of cytokines floating around his system, his body reacted to that which created the additional fatigue. My father's doctor described this in laymen's terms as "being allergic to your own immune system." I'm pretty sure I inherited that as well.
The tricky part is that cytokines also cause all kinds of chemicals that cause a blend of physical and psychological reactions in people that don't normally have/feel/experience these symptoms.

I remember feeling that after my big virus in Dec 2019. Not during but after the actual virus was probably gone. I was so fatigued like never before. For months. And on top of that I got very weird anxiety.
For example, I was trying to get better so I made sure to drink A LOT Of water. And that got me weirdly paranoid that "Uh oh, drinking too much water at once can kill you" -- so I ate some salt --- and then I got scared I ate the salt ---. It was all so strange. But that wasn't the strangest part because even though that was extreme, health anxiety thoughts aren't new to me. What was completely new to me was depression.
I have never felt depressed in my life --- as a health anxiety person I'm always on high alert NOT to die -- but I had feelings I hadn't ever, ever experienced (and I'm not young.) I can't really remember it now or what it felt like then and have never experienced it again. Anyway, point being -- not about depression -- but about how the cytokines cause all kinds of havoc in sensitive bodies.
I subsequently did a lot of reading of medical journals, etc., on this topic.

There are ways to break the cycle. How long ago did this all start for him?

 

[Hope_eternal]

Such a hard situation.
I'm so sorry that you are dealing with this. Poor kid.
The uncertainty sure makes it even worse not knowing what to do.

Thank you.,it’s been agonizingly heartbreaking. I hate this for him immensely. I hope we can find something to give him his life back. He begged me not to get him at college. He wanted to stay so badly., It’s awful he’s going through this and missing out on his college experience. He was so proud of himself and loved his college. It’s just so sad. The crash took place Oct 2022, 3 months after he got Covid. But looking back the loss of energy started in 2021 after he started Stelara for Crohns. He also received 2 Covid shots during that same time. I would constantly reach out to his Crohns specialist letting him know how tired he was. He wasn’t even able to do 1 class at school his senior year of high school. It wiped him out. Before he went to college we talked a lot about if he thought it might be too much since he was dealing with fatigue. He wasn’t sure but he really wanted to give it a go, unfortunately it ended up in a very bad way :/ His therapist at the time said we should let him go, he was ready and it would be a good thing for him… Ug I wish I had listened to my intuition, I wanted him to stay home and do a class or two at a community college to see how things went and that way he’d have help. But here we are. Can’t go back and change it. I just hope we can get him to a better place!

 

[Seadragon]

. But looking back the loss of energy started in 2021 after he started Stelara for Crohns.

If he were to come off Stelara for a time (under medical supervision of course) to see if that improved the fatigue, would that be life threatening for your son?

It just still sounds to me that this drug is at the heart of the problem.

I'm not medically qualified so this is just my thinking, but perhaps Stelara caused immune system depression which, along with the Covid infection and two vaccines, ie further depleting his immune system, has led to the extreme fatigue. Perhaps the Valtrex treated a reactivated infection due to his depleted immune system.

Sorry if this is very badly written, in a crash at the moment but wanted to suggest this as a possible theory.

Hugs xxx

 

[Hope_eternal]

If he were to come off Stelara for a time (under medical supervision of course) to see if that improved the fatigue, would that be life threatening for your son?

According to his Crohns specialist yes it would be very risky. She would want to put him on another biologic. His functional doctor agreed since he is severe Crohns it’s too risky to take him off medication. The medication his doctor is willing to switch him to requires 3 infusions over the next 3 months. There’s no way to get him there for them because he is bedbound and prior infusions before he got to this severe fatigue wiped him out for a week. So I’m afraid to do that to him, Also the medication is in the same class as the one he’s on, I need a really knowledgeable doctor but can’t find one. There are just so many variables at play.

 

[Hope_eternal]

Sorry if this is very badly written, in a crash at the moment but wanted to suggest this as a possible theory.

I’m sorry you are crashed. I hope things turn around for you soon! ❤️‍🩹