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Will I get worse with time? honest answer please

Messages
24
Hello guys,

26 years old male here

I have been suffering from these symptoms for around 4 years now, when I first started having these symptoms I went to an infectologist and he told me I had mono, we did a few tests and my EBV count was really high, after around 1 month my symptoms got better(just better), but haven't dissapeared since then, they come and go and sometimes are better than others.

These are my symptoms:

- Brain Fog (I can say that this has gotten a little better with time, not sure if it's because of supplements)
- Sinus
- Muscle or Joint Pain
- Bad Breath (I think this is because of the sinus)
- Sore Throat
- I go to sleep and wake up like I haven't slept at all

These are the main symptoms I've been dealing with for the last 4 years, things that have helped:

- Monolaurin
- Meditation
- Sleep good amount of hours(I can't do this very often, because I usually just sleep 6 hours a day)
- For some reason it seems like if I go out to any activity like swimming or climbing a montain or something similar while I'm doing those activities I don't feel the symptoms, but after I go home and relax the virus or whatever takes its toll on me.
- After 6 p.m I feel better for some strange reason I don't understand.
- Kissing & Sex doesn't seem to affect others even when I have the symptoms going
- Water Fasting
- Sometimes symptoms dissapear completely for a day or two and then it'll comeback to remind me it's still there

So I've read a lot of posts here of people that cannot even walk, and I'm wondering if I will get worse with time and will get to a point where I can't walk or can't do anything.

Does this sound like CFS to you or chronic ebv?
Will this get worse with time?


Thanks
 

Rebeccare

Moose Enthusiast
Messages
9,060
Location
Massachusetts
I've been sick for almost 11 years now, and my health and energy level has stayed pretty even in that time. I've had some days/weeks/months where my energy has been better or worse, but my baseline has been more or less the same. I actually think that some of my symptoms have improved slightly over the years, perhaps because I've learned to manage this condition better and not overdo it the way I used to.
 

AlwaysTired

Senior Member
Messages
174
No one can really say, as there is no predictably with this disease (at least not at this point, maybe in the future as research advances). Some get better, some get worse, some go up and down.

Mine also started with mono, both EBV (predominantly) and CMV. That was 3 years ago, age 37. The first 6 months on medical leave were the most severe (possibly because I dragged myself to work for a month and a half before, thinking it was the flu). I slowly began to improve after that, with my symptoms sometimes waning to the point that I can go out and do things. I had a 3 month period earlier this year that I could even work out and go on hikes. I crashed after foolishly going on a very strenuous hike back in March. I didn't listen to my body, which was feeling a bit run down at the outset, and I've been trying to climb out again ever since. It's been, like always, a very slow climb.

My main concern is getting worse just because things like loss of energy, brain fog etc are more common with age. Namely, I'm concerned with how menopause will affect me, as the loss of estrogen causes brain fog, fatigue for a lot of people. But that's hopefully many years off for me.

You don't ever have to worry about THAT though, since you're male, and the age related stuff is still a ways off for you too.

EBV related CFS tends to have higher recovery rates than other variants, specifically in young folks, so there's that.

Try to take it easy and don't push yourself, even if you feel like you are up to it at the time, or you will likely make things worse. You could quite possibly make a full recovery if you are careful now, especially as you sound like you're at the milder side of the spectrum.
 
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Judee

Psalm 46:1-3
Messages
4,390
Location
Great Lakes
After 6 p.m I feel better for some strange reason I don't understand.

I think that happens with a lot of us. I'm wondering if its when most of our systems have finally stabilized such as temperature, bp, etc.

Does this sound like CFS to you or chronic ebv?
Will this get worse with time?

Since EBV can go into hiding within our cells it could be chronic reactivation. Because you are within your first 5 years of getting the disease, I think you can make a difference by doing aggressive rest therapy now. It may give your body more power to fight this.

Also did your doctor offer any antivirals? They seem to work best within the early years of this disease but I still think they need to be taken as a long course, i.e. over a year, I think.

If not, I do find that antiviral herbals like garlic and/or oregano oil can be helpful. I think it is important to find several that are and then rotate them because otherwise I develop allergies. For instance, making one day the garlic day, the next the oil of oregano day, etc.

Also I find Thymus glandulars helpful for those days when I have the "crimson crescents." I use Swanson brand and open the capsule and mix it with some low-allergy vitamin C and then kinda gargle with it before drinking it down.

This could be part of the rotation. I would stay away from those with auto-immune warnings like echinacea, elderberry, or oxymatrine though. Also don't take the Thymus if you think you are having an allergic reaction to something because it turns up the immunity and when you are reacting to something you don't want to do that.

Red Marine Algae is also an anti-viral but more geared towards the herpes virus family, I think. Plus, the iodine in the product makes my heart pound.

One more thought, I think I have made some things worse over the years by pushing too hard to get things done (push-crash cycle) or by using supplements and hormones that are suppose to give me more energy. I think they just burnt me out worse so I would try and avoid those if you can.

Also some people seem to be getting help on the Keto diet so you could read some threads here or on the internet to see if that is an option for you.

I know this disease can be discouraging but you are still young and within that 5 year window of opportunity. Hope you get some help and can improve.
 
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*GG*

senior member
Messages
6,389
Location
Concord, NH
Hello guys,

26 years old male here

I have been suffering from these symptoms for around 4 years now, when I first started having these symptoms I went to an infectologist and he told me I had mono, we did a few tests and my EBV count was really high, after around 1 month my symptoms got better(just better), but haven't dissapeared since then, they come and go and sometimes are better than others.

These are my symptoms:

- Brain Fog (I can say that this has gotten a little better with time, not sure if it's because of supplements)
- Sinus
- Muscle or Joint Pain
- Bad Breath (I think this is because of the sinus)
- Sore Throat
- I go to sleep and wake up like I haven't slept at all

These are the main symptoms I've been dealing with for the last 4 years, things that have helped:

- Monolaurin
- Meditation
- Sleep good amount of hours(I can't do this very often, because I usually just sleep 6 hours a day)
- For some reason it seems like if I go out to any activity like swimming or climbing a montain or something similar while I'm doing those activities I don't feel the symptoms, but after I go home and relax the virus or whatever takes its toll on me.
- After 6 p.m I feel better for some strange reason I don't understand.
- Kissing & Sex doesn't seem to affect others even when I have the symptoms going
- Water Fasting
- Sometimes symptoms dissapear completely for a day or two and then it'll comeback to remind me it's still there

So I've read a lot of posts here of people that cannot even walk, and I'm wondering if I will get worse with time and will get to a point where I can't walk or can't do anything.

Does this sound like CFS to you or chronic ebv?
Will this get worse with time?


Thanks

You sound a lot like me, I had a crash in 2009 when I pushed to much, that was after being ill 6 years. After that horrible collapse, I didn't exercise for 1 year so I could get better, and I have! Working was still very hard to manage, even Not at full time. I no longer work and I do alright :)

Do you get night sweats? I think mine went away after about 7 years, which I guess is not uncommon.

Do you take meds for sleep? While in my crash I went to a bunch of New drs. I found Remeron and that helped a lot. I didn't wake up feeling great, but not like I was run over by a Mack truck either!

GG
 
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AlwaysTired

Senior Member
Messages
174
I think that happens with a lot of us. I'm wondering if its when most of our systems have finally stabilized such as temperature, bp, etc.



Since EBV can go into hiding within our cells it could be chronic reactivation. Because you are within your first 5 years of getting the disease, I think you can make a difference by doing aggressive rest therapy now. It may give your body more power to fight this.

Also did your doctor offer any antivirals? They seem to work best within the early years of this disease but I still think they need to be taken as a long course, i.e. over a year, I think.

If not, I do find that antiviral herbals like garlic and/or oregano oil can be helpful. I think it is important to find several that are and then rotate them because otherwise I develop allergies. For instance, making one day the garlic day, the next the oil of oregano day, etc.

Also I find Thymus glandulars helpful for those days when I have the "crimson crescents." I use Swanson brand and open the capsule and mix it with some low-allergy vitamin C and then kinda gargle with it before drinking it down.

This could be part of the rotation. I would stay away from those with auto-immune warnings like echinacea, elderberry, or oxymatrine though. Also don't take the Thymus if you think you are having an allergic reaction to something because it turns up the immunity and when you are reacting to something you don't want to do that.

Red Marine Algae is also an anti-viral but more geared towards the herpes virus family, I think. Plus, the iodine in the product makes my heart pound.

One more thought, I think I have made some things worse over the years by pushing too hard to get things done (push-crash cycle) or by using supplements and hormones that are suppose to give me more energy. I think they just burnt me out worse so I would try and avoid those if you can.

Also some people seem to be getting help on the Keto diet so you could read some threads here or on the internet to see if that is an option for you.

I know this disease can be discouraging but you are still young and within that 5 year window of opportunity. Hope you get some help and can improve.

Interesting about the echinacea, because it helps me a lot when I feel run down and achy.

I have the same thing with feeling more awake in the evening. I know for me it's because this damn disease screwed up my circadian rhythm. That's fairly common, since your hypothalamic- pituatary axis gets thrown out of whack with me/CFS.

I second the aggressive resting.
 

Wishful

Senior Member
Messages
5,628
Location
Alberta
My ME hasn't gotten worse over the 17 years I've had it. Slight improvement overall instead. It started with flu-like symptoms from a type IV food sensitivity. Once I stopped the type IV reaction, I still had the baseline symptoms (mental lethargy, malaise, aches) I've mostly lost the aches; the rest remains. My guess is that the severity hasn't changed much, but by gradually learning what triggered increases in symptoms, I've changed my lifestyle to minimize triggering increases.

There are different subgroups for ME/CFS. Some, such as yourself are still able to do physically demanding activities. Your post-exertional malaise (PEM) is different from mine, since mine has a consistent 24-hr delay. Also, my circadian rhythm effect makes me feel worse around 2:30 PM, rather than better at some other point. We all seem to be different.

In your case, I'd suggest not giving up on alternative diagnoses yet; maybe it is a virus or some other cause. Reading others' experiences here should help you decide how sure you are that you do have ME/CFS.

Since you do share the 'not suffering reduced physical endurance' aspect that I do, you might be interested in trying the two treatments that continue to work reliably for me. One is T2 (3-5 diiodothyronine) or iodine. I need to take either of those (just one dose) every 21 days or my symptoms increase significantly and stay at that higher baseline until I do take it. It seems to reset something, I assume through RNA transcription. If you have some tincture of iodine on hand, just take a small drop of that (I apply it to bread or other starch to make it easier to swallow). I feel an improvement within hours, or at least the next day.

The other treatment is cumin (the spice used in curry, not black cumin). For me it effectively blocks PEM for about 3 days. A level tsp of ground cumin is what I use.

No one else has tried these and reported the same level of effect, but maybe it's a subgroup effect rather than unique to me. If you do try it, please let me know whether it works or not. Both make a huge improvement in my quality of life, and it would be nice if I could figure out who else they might help. If you have any other questions about them, just ask.
 

Judee

Psalm 46:1-3
Messages
4,390
Location
Great Lakes
Interesting about the echinacea, because it helps me a lot when I feel run down and achy.

In that case, you might be dealing with an invader (viral) rather than an auto-immune situation. It's not that I don't think it helps. I've just read warnings not to take it if you have auto-immune issues because as I mentioned with the Thymus it can turn up the immunity at a time when the immunity is turned up too much already.
 

mattie

Senior Member
Messages
362
So I've read a lot of posts here of people that cannot even walk, and I'm wondering if I will get worse with time and will get to a point where I can't walk or can't do anything
The state you are in right now that was me 3 years ago.
Now mostly bedbound and housebound. Cant walk more than 100 metres on a good day. Trend is downhill.
But its different for all patients.
 

mattie

Senior Member
Messages
362
Don't do those things that make you feel worse later.
It means you've gone too far and your body is hurting and telling you not to.

Mountain climbing !!!
(Bloody hell ).
Ik did the same thing. In the year leading up to full blown ME, being active actually made me feel better.
4 monts before being completely bedbound I was doing long hikes, over 140km a week (!).
In hindsight being active enabled me to dig into my reserves deeper, running on adrenalin.
Than at some point I completely lost my ability to sleep and than it was all over.
Never recovered.
 

AlwaysTired

Senior Member
Messages
174
This thread is really hitting home right now, as my mom (who I've suspected may have CFS) also has been "feeling better" when she goes out and does things (including hiking) but then crashes energetically the next day, and will push herself to go out and do things even if she's tired/fatigued. I told her that she feels better because of the adrenaline and endorphin release (a lot of her activities have a social component) but the proof is in her crashing the next day. I've told her to cut back as I don't want her getting like I am, or worse, especially because i wouldn't be able to take care of her. I read the OP and comments in this thread that are relevant to her, to make her realize how seriously she needs to take taking care of herself and taking it easy.
 
Messages
24
You sound a lot like me, I had a crash in 2009 when I pushed to much, that was after being ill 6 years. After that horrible collapse, I didn't exercise for 1 year so I could get better, and I have! Working was still very hard to manage, even Not at full time. I no longer work and I do alright :)

Do you get night sweats? I think mine went away after about 7 years, which I guess is not uncommon.

Do you take meds for sleep? While in my crash I went to a bunch of New drs. I found Remeron and that helped a lot. I didn't wake up feeling great, but not like I was run over by a Mack truck either!

GG
I don't really get night sweats, I just get fast heartbeats sometimes.

I don't take meds to sleep, sometimes sleeping becomes really hard, but I have managed to get to sleep
 
Messages
24
The state you are in right now that was me 3 years ago.
Now mostly bedbound and housebound. Cant walk more than 100 metres on a good day. Trend is downhill.
But its different for all patients.
Ouch, hope you get better and I hope I don't get worse hehe
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I don't really get night sweats, I just get fast heartbeats sometimes.

I don't take meds to sleep, sometimes sleeping becomes really hard, but I have managed to get to sleep

Ah, glad to hear you don 't have the night sweats. Sounds like you could use some help in the Sleep area, the better quality sleep you get, the more likely you will be stable and perhaps even get better health wise. You are not likely to get better without better sleep. We are not machines, we need rest.

GG
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
For some reason it seems like if I go out to any activity like swimming or climbing a mountain or something similar while I'm doing those activities I don't feel the symptoms, but after I go home and relax the virus or whatever takes its toll on me.

You sound like a classical ME case to me, mono being the trigger isnt at all unusual. You seriously need to quit mountain climbing!!

As to your question of "will I get worst" .. if you keep up pushing the exercise to the point where you have crashes from it, you have any risk of possibly getting worst. You need to learn your limits and how much you can do without causing a crash and then try to stick to those limits. Until you work out your limits, you are at a lot more chance of possibly crashing and not recovering from the crash. Every crash can be a risk.

Its interesting that water fasting helps you..and it may be of help to you to figure out the why it is. It may be helpful to you if you have food intollerences or other food issues affecting which you havent figured out yet. Watch out for the possibility that you may be developing POTS re your episodes of fast heart beat. As eating can also be a POTS trigger be aware that POTS patients may feel a bit better when water fasting though I kind of doubt you'd be doing okay at mountain climbing with POTS.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
[QUOTE="cfs_ebv_hiphop, post: 995266, member: 28463"
Does this sound like CFS to you or chronic ebv?
Will this get worse with time? [/QUOTE]

It sounds like CFS since you get the PEM dynamic, i.e. symptoms rise after exertion. For me, my CFS has progressed along the many years. The neurological aspects seem to have been most affected, e.g. cognitive & brain fog.

Keep in mind this forum is comprised of many different long term illness patients. A guesstimate would be 70% PWCs and 30% other.

I’ve tried a lot of different popular protocols but none have helped much if at all over the years. I’m of the opinion the illness is neurological and not precipitated by a virus. Research and experienced observation leads me to think it’s an autoimmune disease similar to MS. Will it get cured - has MS been cured? I think a lot of research efforts have been wasted ‘looking for the keys where the the lamp post shines.’ It’s time for a shift in focus, e.g. looking backwards at why some neuro/cognitive drugs give the most symptom relief - why and how?
 
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