Mono black hole

[Amaro Bikes]

Hi all

That's a question about Mononucleosis and Mr Epstein Barr, I guess some of you already have the "pleasure" to meet this nightmare.

Since last December (yes, end 2012), it's been an endless circle of being tired and some peaks of laid in bed with low fever and kind of cold/flu. As situation got worst every month, April was the end of it for any cycling or excercise and got easy on efforts. Months went by and about a month ago it all seemed kind of better, so went back to do some cycling (otherwise it would be mental helth what would have been in risk!), and it's been just 3 weeks to get back to the sadly well known weakness and lack of any strength, including unusually high heart rate. (10-20 more than "normal")

IGM values have been negative since long ago, but IGG still positive. I've been with too many doctors and specialists, and some of them say IGG normal to be positive and does mean nothing, while others say if it's positive something is still working inside. Some say "do whatever you feel like" others say "do absolutely nothing and rest", some... others... might be none have any idea?

I also tested for coeliac disease (in case inmuno system and defenses where the key issue), but negative.

Any ideas out there? or there's nothing to do except wait till one day it all ends?

Boy, how good is to have health and how little we do realize of it when it all goes fine

Thanks for your thoughts or experiences

[big shanty]

Mono is terrible, if you get a bad case. I had it ~7 years ago. The lead-up was about a month of sore throat (one side) and being really grouchy. Then "it happened" and completely knocked me out. The most humbling illness I've ever had. My strategy was to completely shut it down for 3.5 weeks. Stayed home and slept, practically all day. Transitioned back to work, half days for a week or more, then was fine. I did notice that when I got sick for a while afterwards (colds, etc) - sometimes, not always - I would get a taste of that familiar listless exhaustion.

Having those sorts of symptoms as an ongoing issue sounds pretty wretched. I'd say see a new doctor, make yourself sleep more and take it mellow for a while even during times when you feel "better".

[Too Tall]

Get thee to a crackerjack nutritionist who knows their stuff.
Unfortunately I had Mono during an extended stay in a third world country. The only doc. I could find told me that I was sick because I did not believe in g-d and prescribed opiates. Sorry for the "story" you could probably use a good laugh.
Heal yourself.

[WayneJ]

Hi all

That's a question about Mononucleosis and Mr Epstein Barr, I guess some of you already have the "pleasure" to meet this nightmare.

Since last December (yes, end 2012), it's been an endless circle of being tired and some peaks of laid in bed with low fever and kind of cold/flu. As situation got worst every month, April was the end of it for any cycling or excercise and got easy on efforts. Months went by and about a month ago it all seemed kind of better, so went back to do some cycling (otherwise it would be mental helth what would have been in risk!), and it's been just 3 weeks to get back to the sadly well known weakness and lack of any strength, including unusually high heart rate. (10-20 more than "normal")

IGM values have been negative since long ago, but IGG still positive. I've been with too many doctors and specialists, and some of them say IGG normal to be positive and does mean nothing, while others say if it's positive something is still working inside. Some say "do whatever you feel like" others say "do absolutely nothing and rest", some... others... might be none have any idea?

I also tested for coeliac disease (in case inmuno system and defenses where the key issue), but negative.

Any ideas out there? or there's nothing to do except wait till one day it all ends?

Boy, how good is to have health and how little we do realize of it when it all goes fine

Thanks for your thoughts or experiences

A fellow woodsman had similar symptoms which were eventually traced back to a tick bite. I cannot remember the name of the ailment, but it is a rare derivitive of Lyme Disease.

No doctor found the problem until he stumbled upon some information on the internet and he suggested the idea to one of his doctors. That started a chain of good events which put him back to good health soon thereafter.

[Amaro Bikes]

Thanks all for your answers, maybe it's all about g-d! ;)

I've already been with 4 different docs, one of them apparently really good, but that's the kind of bicycle mechanic thing, there're always super good ones around by mouth, but when getting hands on your own stuff, the list gets much narrower and feels like they do not have much idea. Has to be difficult to be doc as it's all too misty. I've also asked for a visit next week with one of those guys who read your iris, at this point, I'm open to almost any perspective.

I'll let the doc know about this Lyme disease, although after reading a bit about it sounds quite worrying! :o

Thanks again for your thoughts on that.

Cheers

[Guillaume]

Hey Aimar,

A few years back I had a similar body shut down. The docs found that my liver produced more of a certain enzyme (or something like this) and one of them told me I cought a cytomegalovirus. All I needed was to rest and don't do much activity. No meds or drugs were needed, gradually I got more energy and could resume my normal activties.

Get well.

[Amaro Bikes]

Hey Guillaume, thanks for your reply

After last week's visits (docs and even one of those guys who read the iris), apparently it's all going to be as you said, nothing much to do rather than take some helps for increase low body defenses and mandatory absolute rest (no excercise at all allowed, and even taking normal life on an easy basis, so workshop time goes slower as well).

I feel like a child punished in his room, but at this point I only want it to get properly healed and forgot this bad year, so let's get all easy and hope the best.

Cheers

[acousticbike]

Epstein-Barr virus (EBV) is similar to other Herpes viruses (Varicella or chicken-pox, cytolomegolvirus- CMV- etc.) in that once you have been infected, the virus remains in your body for life, hopefully under control of the immune system. If your immune system gets weakened (chemotherapy, immunosuppression after organ transplant etc.) the virus will become re-activated. If you try to return from a primary infection too quickly, the virus can be reactivated. The best treatment is rest. The EBV IgG will remain positive for life after infection, so cannot be used for monitoring recovery from infection. The only way to do so is to measure the actual number of viral particles in the bloodstream (EBV DNA PCR) to ensure that the virus has been effectively cleared. This test is quite specialized and only regularly ordered in immunocompromised individuals.

[Amaro Bikes]

Well, for the moment no big results so far, 4 months of absolute rest without any bike or any other exercise (apart from files and saw). Inmune system still weak but "red" blood seems to recover a bit, but "white" blood too low.
Just wishing to see all this 2013 nightmare fade away and have health back in 2014. I'll have to remember what all this cycling thing was about...

[dennis]

I second the nutritionist thought.

Sleep: Do you regularly get enough sleep? Do you snore? If you snore like a freight train regularly, you may not get the sleep you need even if you spend several hours in bed.

Labs: If IgM is negative, no active infection, doesn't mean you don't still feel beat up. Checking for CMV is not a bad idea (Cytomegalovirus), again, only IgM tells you about active infection. Last thought is to check TSH, which is the chemical put out when your body is low on thyroid hormone. Lots of other tests for your thyroid, but that is the one to get. Might consider checking HIV as well.
If you have a history of being the person who always gets sick then checking immunoglobulins would be a thought.

Touchy/Feely: Last thought from left field, use this time to make sure the different components of your life are in balance- physical, emotional, professional, spiritual... Not talking about getting religion, just make sure everything is getting the attention it needs. In the end, usually it is people overdrawing on their available energy for too long, burning the candle at both ends sort of thing.

Hope you get well soon.

Dennis

[Amaro Bikes]

Hi Dennis

Thanks for your thoughts. During all this year process I've alredy gone through almost all possible tests to check (epstein barr, cytomegalovirus, vih, gluten intolerance, thyroid hormone, diabetes, tumoral inds, and so on) but nothing seems to be "positive" or wrong, simply getting ill over and over again as inmuno system is too low so body will easily got flu, cold, etc. Apparently it might be a consecuence (long one) of getting mono or putting your body under stress (training) when it was all pretty low,translating into inmuno system consumption, weakness, etc, etc.
Never had any preious issues with getting sick easily, just low iron and anemia in the young old days of sub23 road racing, but that's another story and quite easy to understand. Apart from that, my life is even boring, sleep, eat, files, saw, eat, tig, eat, sleep, repeat...

Anyway, at this point it's getting almost the normal situation, and after trying so many different things and testing for almost everything, I feel that there's not much else to do than hope one day it will all go as suddenly as it came last winter and remember this damn 2013 year as a memory not to ever forget how much we should appreciate when health is good. In January I was just pissed off thinking about the peak loss and races to miss, now I simply dream about being able to do some innocent riding. As usual, it's just a question of perspectives.

Cheers

[Mike Mcdermid]

Have you had your thyroid fucntion checked? Not just TSH some people notice they perform (wrong word) poorly even when the values are slightly out

I had a bad spell years ago they tested everything and lots of things looked like autoimmune problems

[dennis]

Have the doc's asked you about exposure history? What are you exposed to day in and out with work? I don't know the particulars of bike building (my assumption that is what you do). If masks are recommended, do you use them? Ventilation? Gloves/barrier protection? Someone chime in here if there are known exposure hazards.

[Amaro Bikes]

Have you had your thyroid fucntion checked? Not just TSH some people notice they perform (wrong word) poorly even when the values are slightly out. I had a bad spell years ago they tested everything and lots of things looked like autoimmune problems

Hey Mike, I think I just had the normal TSH test, but not sure as my english tech vocabulary is quite limited...
What did you had finally about the autoinmune problems? how did it all end up? (I hope all good...)

Have the doc's asked you about exposure history? What are you exposed to day in and out with work? I don't know the particulars of bike building (my assumption that is what you do). If masks are recommended, do you use them? Ventilation? Gloves/barrier protection? Someone chime in here if there are known exposure hazards.

As far as I know, the workshop is not on the list of causes, I take good precautions (gloves almost all day, breathing filters for tig welding, ventilation when brazing, etc), and anyway 90% of the time is about filing, which does not generate too much of health issues (apart from mental illness with bended ss...)

At the moment I just take it patienly and with perspective, clearly I won't die because of that and there's enough people with much more serious health issues so I can't complain at all, so I'm just looking forward to end this 2013 hoping it will all go as it came for 2014, although I might need some auxiliar small kid wheels on the bike so to learn again all the process...

[rabo]

Slightly OT but there was a dutch olympic speed skater who got Epstein Barr before the olympics. IIRC her (american) coach told her to rest in bed all day except for the one 1 minute all out effort on the ice daily.
Fairy tale ending is that she won olympic gold on the 1000 meter (Marjanne Timmer).