I am asking for any and all comments/experiences with chronic fatigue syndrome and/or Epstein Barr virus. My wife is being treated for a thyroid problem, and feels (as a result of research and symptoms) that she may also have CFS. She will be returning to her endocrinologist soon to go over her evolving symptoms. Without going into lengthly details, she also had mono as a teen, and in recent testing Epstein Barr virus also came up as being a potential problem. Her current age is 28.
She has been a very active athlete, and I am wondering what experiences any of you may have had with this, what treatments worked, how you dealt with it, etc.
Hi there,
Unfortunately I am very familiar with EBV. I am just coming out of 8 months of torture with it. I tried everything there was to try and here is the best of the best: Diet is a great tool to control symptoms. Many of us have problems with sugars and grains making the symptoms worse Accupuncture helped me a lot, but you need to be active with it No exercise at all. Everytime I would train I’d get majorly setback Some fellow EBVers swear by Immunity Care 64 (google it), it is expensive, but these people all report good things Valtrex MAY be effective, wasn’t for me (actually I am one of the weirdos who get side effects on it) Patience, patience, patience. It will get better, but it will seem to take forever.
Any other questions, please feel free to PM me.
Tilden
Thanks for your informative post. It’s very helpful and encouraging to hear of your experiences, especially because (as I’m sure you’re painfully aware) of the frustration and desperation that can come from this health problem.
Don’t know if this helps at all, but we were discussing adrenal fatigue syndrome here recently.
I’m finally seeing an endocrinologist tomorrow. It took 6 freaking weeks to get a new patient appointment. Geez! It makes me fatigued just to think about it. In my next life, I am going to be an endocrinologist…
Look in to Mannatech products. I have seen some of the recent news on these supplements (if that really work) but I personally have known a couple of people with chronic fatigue syndrome and these supplements gave them their life back.
I’m just guessing, but has she been a user of Aspartame? I’ve read a lot of accounts on Aspartame contributing to lethargy. It’s in around 1200 different products so one has to be careful.
I was training for IMUSA this year and had been doing well with training. I thought I had tonsillitis in late Mar/early April. I took four days off and then continued training. After a couple of weeks of feeling ok, I ended up in a pattern of working out 15 hours or so a week and kind of dragging and then having to take a couple of days off. Repeat several times. I’m now to the point where I can only swim (very slowly and never ever doing hard effort) every other day. The one time I tried to do two workouts in a row in the last two weeks, I could barely get out of bed for 1.5 days. It is rough and I feel for your wife. I am 31, female and had mono as a teen. Tested for thyroid problems and all came back normal. Went to several doctors but by the time I got to one who actually understood my training and symptoms, he told me that doing a mono spot or an Epstein Barr titer would not likely show anything because it had been about six weeks since my initial symptoms (any STers out there know about that kind of thing?). The only thing I have found that works is literally backing almost completely, if not completely, off of working out and acupuncture. I’ve been going once a week for acupuncture and it seems to boost my energy closer to a normal level. Good luck.
That is not true on the mono test and the ebv test. What it is not likely to show is that you are in the acute stage. But your levels of antibodies (the IGN I believe) will be significantly higher if you are convalescing.
Most docs do not understand ebv. They think it is an excuse or it is all in the head. Having just come out of 8 months of ebv hell, I’ll tell you, it sucks and is often difficult to find a doctor who will help with it.
But, you are doing the right thing. If it is ebv, you are going to just have to back off. I had to cut back to zero, and now am crawling back up to where I once was at. Patience is the key, as pushing to hard just creates setbacks.
You will want to check out www.genkifoods.com. I am the sales rep and have been doing demo’s in stores with the product. Just last week a lady who has had chronic fatigue for 5 years and has tried many things came into the store and after taking some liquid and powder noticed a difference in her energy level in less than one minute. The product is lacto fermented, and that is the secret, and what makes it very powerful. We have a lot of good information on the website.
pccnaturalmarkets.com is a great resource for anyone trying to find information about many conditions including medication side-effects, nutritional modifications that can be made and other details on the condition in question. What others have said thus far including ‘patience’ is key. I wish you wife the best with healing! ERIK
I’ve dealt with hypothyroidism for the past 12 months, and only now am I back to 95%. Initially it started with not recovering from workouts that well in the summer, and I tried to run cross country/swim in the fall but started to become extremely tired, I thought I had anemia so got a complete bloodwork up done, and it was found my thyroid levels were slightly elevated. My Dr was very hesitant about raising the dose quickly, so I was started at 0.05 mg/thyroxine/day and found it made abit of a difference, but I was still sleeping 12h/night and just going through the day as a zombie, I attempted to keep training (swim varsity) but had to cut that back to 3 days/week just to finish the season cause my team needed me, and then after that I took 3 months off. I found I also became very depressed, and so I started volunteering as well to help pass the time. My thyroid levels actually got worse on treatment before they got better, but I was very proactive about going in every month to get reevaluated. Now my dose is 0.125 mg/day and I think thats perfect, my T3 levels have been stable for the past 2 months, I can train ~10-12h/week, I have a new coach who is very understanding and we’re just focusing on key intense workouts without all the fluff. PM if you want more details…
I had gotten chronic fatigue syndrome in my second year in triathlon.
I remember always going super hard on the bike in all kinds of cold & wet weather.
I had gotten pnemonia twice in one year and did Ironman Florida with pnemonia.
After the race I was bed ridden for 7 months and didn’t start doing tri’s again until at least a year and a half after getting better.
I remember feeling like I’d never be the same again, and I did come back stronger and smarter in the way Itreat my body and train.
Good luck and try and do tons of research on natural remedies like juicing and herbs, they have helped me lots!!!
I’m going through my 4th bout of EBV right now since the early 80’s. Back then they didn’t know about it, and it was often called Chronic Fatigue, or overtraining…They still can’t detect the virus, but my doc says they are about a year away from that. They way it is detected is by looking at the different antibodies that fight it. There are at least 4 that I know of, and the levels are what they look at. Unfortunately that doesn’t tell you the truth about what is going on. High antibody levels could mean either you are fighting it good, and the EBV is very active, or the EBV is low, but you are still producing antibodies. A low count could mean that it is almost gone, or your body is not fighting it well. WIthout actually counting the virus itself, it is a guessing game.
As others have said, you have to take off completely. I’ve known lots of pros that have gotten this over the years, and until they come to grips with the no activity requirement, it will not go away. It usually takes at least 5 months, and often more than a year. My bouts have taken 5months, 6 months, 15 months, and now about 4 months into this one… The 15 months was after my heart surgery, so I got an extra big dose…And don’t think that you can’t get it out there, apparently almost all of the population has this virus, just a mater of activiating it… Twice I did it from racing and training sick, 3rd time from the heart thing, and the last one was from severe travel stress+ race+ 3 hard training days after…Looking back on it, really stupid, but when you are healthy, you sometimes feel invincible, and ignore common sense. I hope I learn something here, and I will always take a couple days off after every race, no matter how short…
There are no proven drugs to take, just good sleep if you can get it, and get out into the sunshine everyday for a walk or something… I woud guess a good diet won’t hurt, and you have to somehow get a positive mental atitude. That’s the hardest part, because you feel like you will never get better. Most important is that when you feel better, don’t do anything for a month at least of feeling good. Easy to start too soon and relapse, and then it starts all over again…Good luck…
I had it for over a year. It was the hardest thing I have ever gone through. I had a hard time just going grocery shopping. If I ran even an easy mile I would be in bed for days. It was awful. (I have never in my life not been able to run 5 miles no matter how out of shape.) For me this is what helped:
A healthy diet and vitamin supplements (magnesium , fish oil supplements and lecithin seemed to help more than others).
Only doing MILD exercise (Yoga).
Lowering the stress in my life ( I sold a high stress CPA practice.)
Time to heal.
Good luck to your wife, I hope she doesn’t have as hard a time as I did with it. The good news is that I DID get better and will now be doing a 1/2 IM in August. I have been well for over 6 years.
For those of you that have had chronic fatigue or EBV, how long did it take before you felt like you could really train again, or do you feel like you can’t train like you did before?
Used to be you had to go on just feel, and that was dangerous, because you can feel good and still have the virus…But niow there is an actual test for the DNA of the virus, so you can know for sure if it is gone. The antibody test is not so good, because the virus can be gone, but antibodies can hang around for a long time…Go get the blood test…
I had it for over a year. It was the hardest thing I have ever gone through. I had a hard time just going grocery shopping. If I ran even an easy mile I would be in bed for days. It was awful. (I have never in my life not been able to run 5 miles no matter how out of shape.) For me this is what helped:
A healthy diet and vitamin supplements (magnesium , fish oil supplements and lecithin seemed to help more than others).
Only doing MILD exercise (Yoga).
Lowering the stress in my life ( I sold a high stress CPA practice.)
Time to heal.
Good luck to your wife, I hope she doesn’t have as hard a time as I did with it. The good news is that I DID get better and will now be doing a 1/2 IM in August. I have been well for over 6 years.
