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CURBUR's Photo CURBUR Posts: 681
1/21/13 7:36 A

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Hi, my name is Carey. I was diagnosed with EBV about four years ago. At the time, I thought that it was temporary and that when my symptoms faded that it would be gone My doctor never warned y that I could have reoccurring flare ups. I still work a stressful full time job and struggle to balance that with taking care of my family. I know that if I overdo it and don't get enough sleep that it will trigger a flare up, but there is so much to be done. All day yesterday my body was warning me, but I kept pushing myself. So, I get to spend the day in bed and hopefully I will be good enough tomorrow to return to work.

Edited by: CURBUR at: 2/4/2013 (13:20)
Carey


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LORIFOG's Photo LORIFOG Posts: 8
12/2/12 11:03 A

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Hi! I haven't had a chance to look around the board that much but I'm hoping it's still active. :)

I'm Lori, 50 years old, 2 kids 23 and 20 ( the youngest with special needs). I was teaching PT until July and then I just couldnt do it anymore. I've been sick since Feb or so ( diagnosed with fibro about 13 years ago but managing it pretty well till then) and started the doctor route...got a diagnosis of CFS in Sept from my immunologist ( my pother docs dont believe in CFS. I've been trying to lose weight all my life...this last few months I havent been able to exercise and have gained even more weight...hoping to get back on track with people that "get it"!

QIBALL52's Photo QIBALL52 SparkPoints: (17,801)
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9/21/11 9:11 A

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Hi, I'm Paul

Got a fungal (candidas) lung infection several years ago (living in tropical area), and I'm still fighting it, along with a suppressed immune system and depression, today.

A friend of mine got such great results on SparkPeople, that I signed up last week, and just found this group.

'...Music is Best.' Frank Zappa


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RABDALLA SparkPoints: (0)
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9/17/11 1:06 P

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Hi Cissy, I hope you will have a great health and you will get rid of all these symptoms. I love your optimism. My name is Rania and i got to know last year that I have Epstein barr. I dont know when did i really get it and I m not sure if the symptoms I have are linked to it or not. I get attacks/episodes where I am very sleepy, cant wake up with the kids to prepare them to go to school in the morning, very low energy, very depressed and horrible body aches. My husband is usually a supportive person but not on this one. He thinks that its psychological. I dont know how to really know what do I have and how can i control those symptoms. You have mentioned that you went to a doctor and he figured out what do you have. Could you please let me know who should I got to ? which specialization? what tests should i ask for? Many thanks and Remain in Good health emoticon

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6/3/11 9:16 P

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Hi
I'm Christina and I'm 38 and was diagnosed less than a year ago. I have a half marathon Father's Day and I'm bummed .

Perspective.....


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BABYMAR's Photo BABYMAR Posts: 1,254
4/16/11 11:17 P

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hi ladies, i'm marlee, 37 and have had cfs for 13 years, but was diagnosed 11 years ago. i had mono at 17 and took a few months to recover and then had it again at 24 and never recovered. i've tried different things over the years, but mainly stick with anti-depressents for the depression this causes and a sleeping pill for my insomnia that makes my fatigue worse. i've been looking into IV therapy, but need to find out if my insurance will cover any of it. i'm also on lots of vitamins and finding that some work sometimes. my oldest son was 4 when i got sick and it was really hard on him. i've never been able to work full-time since, although i've tried at times. i met my husband almost 11 years ago and he's had to get used to how much sleep i need, my relapses and all this illness throws at us. we've had 2 other children and they've never known the old me that had energy and could play with them at anytime. last year i had a hysterectomy, which threw me into a very long relapse, so i'm trying to get back from that. i wouldn't wish cfs on anyone, its an illness that can't always be seen, is hardly understood and is exhausting every day.
best of luck ladies

Marlee in Oregon
Orange Alpha Tiger ~ BLC16

"Be not afraid of going slowly, be afraid of standing still. " Japanese Proverb"
When you are down on your back, if you can look up, you can get up." Les Brown



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MYABUNDANTLIFE's Photo MYABUNDANTLIFE Posts: 70
4/13/11 6:45 P

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Hi Lisa, my name is Chrissy and I have had CEBV & Fibromyalsia for almost 7 yrs now. Thankfully the fibro is pretty light but the CFS can kick my butt sometimes. I am 39 and have been married for 19 years. I have 2 birth girls & 1 adopted. They r 10, 12, & 14. I have been a stay at home mkm for 14 yrs until lst week. I am now a nanny for a 6 mth old 4 days a week during school hours. Works out well. I haven't found any magic that takes the tired away yet but I do find that the XS drinks from Amway really help. If I drink one about 2:00 I have a better afternoon. Might help some of u guys as well. I was so sad to read some of ur posts. Wish I could help with more than prayers. But I will be praying so keep me posted.
God bless, Chrissy

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LISAMARIA619's Photo LISAMARIA619 SparkPoints: (0)
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4/5/11 1:45 A

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Welcome to the group Cissy! It sounds like you're dealing with a lot. I've had CEBV for about three years as well. I haven't tried any therapies, nor have I heard of any of the treatments you are using. I wish I could help with that but I'm definitely not the right person to ask. :) I'm glad you found a good doctor to help you out! Please let me/us know how everything works out for you, as well if you need anything! Good luck with everything!

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USE2BAGODDESS's Photo USE2BAGODDESS Posts: 2,703
4/1/11 1:55 P

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Hi emoticon I'm Cissy. I've had CFIDS/FM to the best of my knowledge for about 3 years. I had to quit work in Nov 07.

I went through trying to find a doctor who could help, who had a clue?? Finally wound up with a good doctor. He recently did an infection panel on me and wow were the results crazy! Epstein Barr 8X higher than normal, Cytomegalovirus 7.9X higher than normal, massive amounts of pneumonia virus (2 different types) etc.... you get the idea. I also have done a heavy metals test but won't have the results until next week.

I have opted to do the combination alternative treatments along with the conventional medication. I have had more improvement in the past 3 weeks than the past 3 years.

I go either once or twice a week for IV therapy. I receive an H2O2 IV (hydrogen peroxide) to kills the viruses, bacteria, yeast, and mold in my system. I also get a Myers Coctail IV with some added goodies including extra magnesium to help with my tense muscles.

I am also looking into something called Prolotherapy for help with the horrible pain I have in my neck and shoulder from TMJ. I am also considering HCG shots to help with my metabolism and weight. I have to go to different doctors for these, but am anxious to be out of pain and have some energy and lose weight.

I am interested to hear from others in the group. Have you tried any of these therapies? And have you had any success with them?

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LISAMARIA619's Photo LISAMARIA619 SparkPoints: (0)
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2/20/11 11:42 P

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Welcome to the team! 10 years is a really long time to go without a diagnosis. I'm sure that was hard for you! I'm glad you have found something that at least helps you sometimes! Good luck with everything. :)

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SMUCHERS SparkPoints: (52,724)
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2/15/11 1:59 P

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It's nice to see that there are people on this site that go through the same thing I do! It sucks, but I've been in the position that both of you are. It took 10 years for a doctor to even come up with a diagnosis. It's long, bumpy road, but I have done some reasearch and found a few herbs that I add to my diet. They don't help all the time, but when they do, man is it nice to have some energy!

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LISAMARIA619's Photo LISAMARIA619 SparkPoints: (0)
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2/6/11 6:10 P

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Wow that is a lot of blood! I hate getting blood drawn. :( I hope you find out what is going on! It's never fun when you don't know what it is. I'm doing okay. It's getting harder and harder to work and go to school, but I may be transferring schools for next fall which would mean that I'm not going to work and go to school so that would be nice! I've pretty much had the same symptoms the whole time I've had this so I'm not really getting any worse, just staying the same which I guess is better than getting worse! So are you able to go to work or school or anything at all? Or are you just trying to rest and get better?

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2/1/11 9:50 P

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Wow! Thats so great that you are able to work and go to school. I know about the social life thing, it stinks not being able to do regular social activities. And no I haven't heard back on the Lupus or Arthritis yet. I went to the doctor last week and like usual my doctor had no idea what my symptoms matched up to, so they took nine more tubes of blood and a chest X-Ray, so hopefully one of those tests comes back with something that will help.

How are you doing with all of this?

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1/30/11 5:02 P

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My name is Lisa and I've had CEBV for about 3 years. My symptoms haven't ever fully gone away (it's my understanding that some people just experience the symptoms for a couple of weeks at a time and then are fine again), which has been really hard on me. I've been fortunate enough to be able to stay in school and work, but that's about all the energy I have to do, meaning I have no social life haha! I'm hoping that through this site I'll be able to become healthier and better able to handle my illnesses.

Brittany-Wow, it sounds like you have been through a lot! It's definitely a struggle going to college and working too! I'm sorry those things haven't worked out for you. :( Have you found out about the Lupus or Rheumatoid Arthritis?

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1/27/11 11:41 A

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Hi! I'm Brittany. I got CEBV when I was 16, I am now almost 20. It has caused a lot of difficulties in my life, such as not being able to stay in college, or keep a steady job when it acts up. After moving away from home and living on my own for about 6 months I had to move back home because my health was just too much to handle on my own. Right now I am not doing too well and my symptoms have increased. On Friday I am going to see a Rheumatologist because they now think I may also have either Lupus or Rheumatoid Arthritis. But that's about it. Thank you for having this team. For the people who are still active, it is a big help. :)

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1/26/11 7:29 P

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If there are any active SP members in this group, please share some information telling a little bit about you and your experiences with CEBV, or whatever it is you want to talk about!

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