i have had cfs for many years and blood work showed up that mine is caused by the epstein bar virus it is not contagise and there is no cure for it you can not pass it to any one else. I was told to just sleep it off and get as much rest as possible when i feel run down. hope this helps some of you suffers.
Katherine
well, i do not agree with this. ebstein barr can be passed from one person to the other. this is what caused my CFS and my dr told me i am contagious. just sharing a soda or drink, or using same fork, you can pass ebv to someone else. someone coughing in their hand and touching something can cause the spread of ebv as well.
yes, it is true, you are a lifer with cfs, but to just tell you to sleep it off..............
did you dr tell you that you should take vitamins to try to keep yourself going. i am taking a one a day max multi vit, b complex +c, co Q-10 (100 mg), evening primrose oil caps and i also take a garlic tablet (kyolic) as i also suffer from yeast (thrush). garlic is very good for you. if you are not taking any vitamins, i would if i were you. it took me a long time to get to feeling where i could function.
karen
Last edited by velvet48; 06-13-2004 at 05:08 PM.
Reason: to add more
oh you are most welcome. if you go to any search engine and type in ebv, you will find a lot of info on the subject. it bothers me that dr's tell us we are not contagious when we are. most of us become positive with eb as children by kissing our moms, but we are healthy. if you are not contagious then where did you pick it up from. i would ask my dr that.... LOL
take care
karen
It's not the Epstein barr that you pass it's the form of Mono it comes from.
I tested Positive for EB 5 years ago and it's caused by a form of Mono I had as a kid.
When I was pregnant with my second child I had fatigue so bad I would cry and cry. They wanted to test me for Mono and I told them I already had it.
Low and behold it came back Pos. and they ran more test. I felt like a pin cushion . Conclusion was EB which is one of the only ways they can prove Chronic Fatigue.
You are right, there is nothing you can really do. It hits me if I get too worn down, sick or stressed. I try to take good care of myself and rest with two kids does not happen for me LOL
Good Luck to you all
i believe the mono comes from the ebv. at least this is what my dr told me. people who are positive with ebv go either way, they get mono or they get cfs. ebv is contagious.
karen
Vegas girl is right.
I have the Epstein virus in my body still but I was only contageous when I was 15 when I had mono( aka glandular fever in the UK) This was 12 years ago. Has anyone got abnormal blood results with high levels of IGM or IGG, ESR or CRP just wondering cause I have. I am still fighting this illness
My doctor told me yrs ago that it was in the air like the flu, so in a sense it is contagious, but that it was nick named the yuppie disease, because people were getting it from over work or when your system has been down due to illness or disease. Its out there, but most people are immune to it. My kids are 13 and 14, I have kissed them daily for all of there lives, they have stolen probably every glass of pop that I have ever poured and drank from these glasses. They are so active that without this syndrome, they would make me tired just looking at them.
With CFS your are not a lifer.. many people have conquered this problem and anyone who tries to make you believe different has someting in it for them.... medical doctors will not cure you of this problem though.
well, i do not agree with this. ebstein barr can be passed from one person to the other. this is what caused my CFS and my dr told me i am contagious. just sharing a soda or drink, or using same fork, you can pass ebv to someone else. someone coughing in their hand and touching something can cause the spread of ebv as well.
yes, it is true, you are a lifer with cfs, but to just tell you to sleep it off..............
did you dr tell you that you should take vitamins to try to keep yourself going. i am taking a one a day max multi vit, b complex +c, co Q-10 (100 mg), evening primrose oil caps and i also take a garlic tablet (kyolic) as i also suffer from yeast (thrush). garlic is very good for you. if you are not taking any vitamins, i would if i were you. it took me a long time to get to feeling where i could function.
karen
The only time that EBV is contagious is when you have a fever. It is contracted when you have a sore throat or strep throat, while your throat is raw and you come into contact with the virus at the same time. So it is spread to others only if these same conditions are met with another person.
The EBV causes Chronic Fatigue Syndrome which causes Fibromyalgia, also EBV can cause Thyroid Disease. And the symptoms of these three diseases are very similar and often connected.
i have all three,
When it comes to Syndromes and Viruses they stay in our bodies, they may become inactive, but they are still there.
And always giving in to the feeling of needing to sleep will only cause you to need more sleep, the best remedy for that is get active doing something to get your mind off of it, our bodies do not need us to sleep 1/2 the day, which is what we will do if we give in to the feeling. i know i have done it.
The other thing to remember is to eat good well balanced meals, drink lots of water, plenty of fruits and veggies.
And the best Vitamin Supplement to take is one that i found and got approved by my doctor, is a multivitamin called >> One Source , Complete , Adult High Potency Formula, and it is inexpensive and you can find it at Walmart's and probably most other pharmacies that carry over the counter vitamins.
For the first 2 weeks take 2 a day to get it into your system and then just one a day thereafter.
Here is a list of what it has in it :
Vitamins >> A ; C ; D ; E ; K ; B6 ; B12 ;
Thiamin ; Riboflavin ; Niacin ; Folic Acid ; Biotin ; Pantothenic Acid ;
Calcium ; Iron ; Phosphorus ; Iodine ; Magnesium ; Zinc ; Selenium ;
Copper ; Manganese ; Chromium ; Molybdenum ; Chloride ; Potassium ;
Boran ; Silicon ; Tin ; Vanadium ; Lycopene ; Lutein ; CoEnzyme Q 10 ;
It contains 300% of the Daily Requirements of the B Vitamins to give energy,
i have been taking this for years, every since i found out about it, i used to take vitamins seperately, but it is so expensive that way, plus it is easy to overdose some vitamins, which to my dismay i had found that i had done. So since then i only take the One Source, i have tried other methods but nothing is as good as the One Source !!
If not for the One Source i wouldn't have the strength or the energy to do anything. It keeps me going. Even tho at times i still over do, and wear myself out, and get exhausted. i just sit it out for awhile and get some rest and then get up and go again.
i also have Scoliosis and Congestive Heart Failure, my heart pumps with about half the strength of a normal heart, so that alone makes me tired easily, but i don't give up, i can't afford to give up. i live alone and have to do everything myself.
i hope the information that i have provided is of help to you all
I had to give up automechanics because I can't hold a wrench anymore. I was in the military and am now suffering from a whole array of problems. Chronic fatigue syndrome is only a small part of my problems...
EBV is so misunderstood by medical doctors when it comes to CFS. First, the earlier post about CFS is true. They don't have a clue what causes the illness, just a bunch of theories. If I had nickel for every theory i read about, I be rich. There is a biological marker called RNase-L that has been in the works for a long time that looks promising, but research is still needed for this marker (and continues). It's open to the public in only one lab that I know of, but on research basis only and insurance will not cover it. And, it's not cheap. This marker may be used to determine if ones has CFS in the future.
EBV is in most of the population, most have been exposed to it sometime in our life. That's the problem with EBV, they thought that was the cause of CFS back in the late mid 80's thanks to the CDC, but then they realized that normal healthy people have EBV and feel fine. I have levels of EBV in my blood and I don't have CFIDS. I feel fine and never been sick except the common cold. My wife was diagnosed with CFS/FM, now I have Lyme on top of it which make things more complex, which came first the Chicken (CFS/FM) or the Egg (Lyme). Anyway, that tossed out the theory of EBV causing CFS.
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Please I am honestly beggan you to take the western blot test from califonia try to fined a doctor that coaperates with you to order it or find it. I was diagnosed with Chronic fatigue and I never stopped looking for answers so I found out the truth. and Lyme disease is more common then you think and you would benifit from taking it. please i don't want another person to suffer from fake chronic fatgue.
I think I have a good idea what I may have. It is gulf war syndrome symptoms but I never deployed overseas because I got very sick in the military and almost died in there in the hospital; my army career ended at that very moment due to health problems that have been ongoing since July, of 1990. I have been told that I may have autoimmune disease? but the doctor said it sounded like chronic fatigue syndrome to him? He also told me to look into the mycoplasma bacteria that was found in my blood. Does this sound like the inoculations we were given was contaminated? I have heard that the anthrax vaccines we were given had mycoplasma fermentans in them that may have survived the processing procedures despite checking them, some may have survived? The bacteria was found in my blood when they checked it; Is this mycplasma bacteria a contamination that is the reason why I am so messed up now? I will say I am in bad shape and wonder daily if I am going to live. I mean on a day to day basis... I don't know why or how I survived this event, but I am on thin ice and am not getting any help from VA or SSA! VA won't give me the time of day for some reason and it is making me very angry that they won't do anything to try and help me with this! SSA claim just folded due to lack of evidence to support my claim. I sent my paperwork requesting my paperwork 8 months ago and still have not received my medical file from the military. This is all very frusterating!!!
Hey guys! Im 3 weeks into Epsteen bar right now. Feeling a little better but worked from home for a week, then had someone help with my kids, and tried to sleep as much as possible. It's such a drag to have Mono, then the doc said I caught a virus from my 3 year old, and working full time and raising 2 girls on my own made me so run down, the Mono reactivated. I can understand your pain.
I hope everyone feels better.
Take Care,
Sara
__________________
"I believe that friends lift us up when our wings have trouble remembering how to fly."
-Sara
From what I have heard and read, I would strongly suspect the VA will not give you the time of day because they already know the shots are at fault. It's all politics. Also, if they can keep discouraging you, most people will just give up. It's no wonder the stats rarely tell the true story. I'm not sure where you go from here, but I would think some veterns organizations should be able to at least provide some answers and not just the run around.
I was an infantry soldier that fell ill from contaminated vaccines! I've been to DAV, VA, [ removed ] , Special Assistant to gulf war syndrome, [ removed ] website, healthboards.com website, Walter Reed Medical Hospital, NPRC for change in discharge type, Senators, Social Security, Doctors, lawyers (X2), etc. all comes back as nothing...
I have even been to the emergency room and they called it heartburn... That is bull ****!!! There is corruption in our system I really do believe that. I am bad off! and no one even gives a darn. Some people have committed suicide even from gulf war syndrome symptoms. One vet hung himself from a flag pole to get attention to veterans-- he had all he could take and gave up! Another man went on a hunger strike until the MOD admitted that he had gulf war syndrome and commenced into starving himself to death!!! The list goes on and on...
My particular problem is, is that the Army hospital didn't tell me that I was effected by contaminated vaccines. They made it sound like it was a normal illness. I later found out that it was really an adverse reaction to the vaccines or contaminated vaccines! the bad thing is, I survived this really bad event! I should have died an almost did but the problem is, is that I didn't die and am alive and suffering now as a result of living through this horrible ordeal! Don't get me wrong, I am glad I lived, but my life is in ruin now to the point of not even being employable. What is one to do in this limbo state that I am in now? I need to be helping my spouse and child and simply can not do that. My mind says yes and my body is too messed up to do anything at all. I have fatigue, and weakness, and I am sick and nauseated daily. Now I more than likely have internal damage from autoimmune disease and lung and brain damage now. I know I have brain damage because my fine tuned movements are of balance to where I have motor skill problems with movement. It is like slow motion sort of... Something is very wrong...
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A former soldier has gone on hunger strike in an attempt to secure a public inquiry into Gulf War Syndrome.
Alexander Izett said he was ready to die to force the military to "come clean" over the issue.
The former lance corporal from Cumbernauld stopped eating last Saturday, on his 34th birthday, at his home in Germany.
Mr Izett said he developed brittle bone disease after being vaccinated in the run-up to the Gulf War in 1990 to 1991.
He took his case to the Scottish Parliament earlier this year but has become frustrated with the progress being made by MSPs.
In a letter to his local MSP Cathy Craigie, the ex-soldier said he was "heart-broken" that he could not get the treatment he needed in Scotland.
He wrote: "This is a last desperate attempt in trying to force the Ministry of Defence (MoD) to tell the truth regarding my suffered illness of Gulf War Syndrome."
He wrote: "I'm now too ill to do anything else but make this final stand.
"I was willing to fight and die for my country. Now I am willing to die to make that country come clean and tell the truth of not only my suffering, but that of thousands of my fellow sufferers of Gulf War Syndrome."
Mr Izett said he wants a UK-wide public inquiry into Gulf War Syndrome because the Ministry of Defence continues to deny the existence of the condition.
Nine injections
He said sufferers should be given priority on the NHS, better pension rights and compensation payments for them and their families.
He said he received nine inoculations, including one for the plague and another for anthrax, whilst serving with 25 Engineer Regiment, based in Osnabruck, Germany.
In the event he never served in the war in Iraq because it lasted only a few weeks and he left the Army in May 1991 after serving for six years.
He said he became ill in 1993 and has since broken his ribs, knee cap and shoulder and suffered from depression and stomach ulcers, leaving him unable to work.
In a bid to get better treatment, he moved to Germany and he now lives in Bersenbrueck near Bremen on a 70% war pension of £72.50 a week, which he secured after a long legal battle with the MoD.
Mr Izett said he would take fluids for the first 14 days of his protest. He said he was being looked after by his wife, from whom he is separated.
Speaking from his home, he said: "When Tony Blair got into power he promised a full public inquiry and we are still waiting. It's all promises. I want to see action."
Holyrood's Public Petitions Committee agreed to write to the Scottish Executive about Gulf War Syndrome after hearing an emotional plea from Mr Izett in March.
I'm now too ill to do anything else but make this final stand
Alexander Izett
Re: chronic fatique syndrom (epstein Barr virus) 
Re: chronic fatique syndrom (epstein Barr virus) 
the bad thing is, I survived this really bad event! I should have died an almost did but the problem is, is that I didn't die and am alive and suffering now as a result of living through this horrible ordeal! Don't get me wrong, I am glad I lived, but my life is in ruin now to the point of not even being employable. What is one to do in this limbo state that I am in now? I need to be helping my spouse and child and simply can not do that. My mind says yes and my body is too messed up to do anything at all. I have fatigue, and weakness, and I am sick and nauseated daily. Now I more than likely have internal damage from autoimmune disease and lung and brain damage now. I know I have brain damage because my fine tuned movements are of balance to where I have motor skill problems with movement. It is like slow motion sort of... Something is very wrong...
