Born with ME

[Tia]

Hi,

I'm new here but read alot about ME and XMRV. I haven't been tested yet but I'm onehundred percent sure I have it since I have all the symptoms. I have had ME since birth and was only recently diagnosed with it. (Funny thing is that no doctors in this country could figure it out, but my friend thought of ME and turned out to be right.)

My question is how many others there are out there that was BORN with ME? I can't be the only one.. And have you also had trouble gtting up in the mornings, going to school and missing out an education in adult life? How did it affect you? have you been able to work at all? Do you have the energy to have friends or are you alone?

My reason for asking is that I've been in contact with a scientist from this country and he said it was very rare to have been born with it, and therefor I wonder if any of you are out there?

 

[taniaaust1]

Hi.. you are the very first Ive heard say they have been born with it. The youngest I'd heard with it till now was 4 yrs old. There is thou many at this site who have children with it.. so maybe someone here does know someone else who was born with it.

it makes me sad hearing you have had it all your life. (i got it when i was in my 20s).

 

[coxy]

Hi Tia, do you not think you could of triggered me with a virus you got as a baby/young child? Why do you think you were born with it what were your baby symptoms to make you believe that?

This is interesting to me as we have 4 children, 2 have had me since 8.5yrs & then got it after both of them & our youngest who is 6yrs is showing lots of symptoms and may have had me since going into hospital with a flu type virus when he was 3yrs old, the same virus i caught from him that triggered mine. We are taking him back to the gp on friday as he is having lots of angry outbursts and hyper sessions, inc tiredness, won't eat most food (no dinners of any kind)has said he gets angry when there is noise around (although he makes a lot of noise with all his anger), feels sick a lot, avoids going out if poss, avoids birthday parties etc.
Our other 2 chuilren suffered similar angry outbursts and crying episodes when they first got ill, it actually went on until they were both about 12 yrs and could control it better, i've nbeen told it's all to do with brain disfunction and young children suffer in the way mine have.
Are you familiar with any of these symptoms?

 

[coxy]

Hi Tia, do you not think you could of triggered me with a virus you got as a baby/young child? Why do you think you were born with it what were your baby symptoms to make you believe that?

This is interesting to me as we have 4 children, 2 have had me since 8.5yrs & then got it after both of them & our youngest who is 6yrs is showing lots of symptoms and may have had me since going into hospital with a flu type virus when he was 3yrs old, the same virus i caught from him that triggered mine. We are taking him back to the gp on friday as he is having lots of angry outbursts and hyper sessions, inc tiredness, won't eat most food (no dinners of any kind)has said he gets angry when there is noise around (although he makes a lot of noise with all his anger), feels sick a lot, avoids going out if poss, avoids birthday parties etc.
Our other 2 chuilren suffered similar angry outbursts and crying episodes when they first got ill, it actually went on until they were both about 12 yrs and could control it better, i've nbeen told it's all to do with brain disfunction and young children suffer in the way mine have.
Are you familiar with any of these symptoms?

 

[Tia]

Hi Tia, do you not think you could of triggered me with a virus you got as a baby/young child? Why do you think you were born with it what were your baby symptoms to make you believe that?

This is interesting to me as we have 4 children, 2 have had me since 8.5yrs & then got it after both of them & our youngest who is 6yrs is showing lots of symptoms and may have had me since going into hospital with a flu type virus when he was 3yrs old, the same virus i caught from him that triggered mine. We are taking him back to the gp on friday as he is having lots of angry outbursts and hyper sessions, inc tiredness, won't eat most food (no dinners of any kind)has said he gets angry when there is noise around (although he makes a lot of noise with all his anger), feels sick a lot, avoids going out if poss, avoids birthday parties etc.
Our other 2 chuilren suffered similar angry outbursts and crying episodes when they first got ill, it actually went on until they were both about 12 yrs and could control it better, i've nbeen told it's all to do with brain disfunction and young children suffer in the way mine have.
Are you familiar with any of these symptoms?

I believe I was born with it since directly after being the doctors held me upside down and smacked me on my behind to make me scream but I wouldn't make a sound. They thought I was stillborn and started looking worried on eachother (my mother told me this) but after the third smack I finally started screaming (they smacked babies then to make them scream to it would clear the airways of any mucus to avoid suffocation). It turned ut I had gone to sleep directly after being born. I slept most of the time inside the womb to, only being active very short periods. I also slept through most of my first years, so I was considered a very nice baby.

Sorry to hear about your kids.. I don't recognise any of those symptoms they have. I only suffer from fatigue, musclepains and brainfog, not being able to concentrate. I also can eat like a horse and eat and drink anything, having a big apetite. I seldom get angry myself, I have a great deal of tolerans and always have, a bit too much I'm afraid, though I'm the too kind-type. I sure hope they find out what's wrong with your kids.. Have you considered aspergers syndrome? Although that wouldn't explain the eatingthing though.. Maybe ADHD?

 

[coxy]

Oh that sounds awlful Tia, sorry to hear that.

Don't get me wrong my 2 children who were diagnosed when they were 8.5yrs have definately got me, they also have all the usual symptoms of muscle pain, brain fog etc etc etc, the anger and crying happened when they were over stimulated i.e brothers/sisters around playing normally etc, they couldn't cope with it sometimes. They were diagnosed quite quicly thank goodness by one of the supposed best me proffesors in the uk.
The youngest is a real worry as he has stumped us as to what is wrong, is it a food phobia issue, symptoms due to a bad diet, behaviour due to a bad diet, struggling at school due to not having healthy foods all the time. He has no behaviour problems at all at school, so it's not ADHD. He also doesn't figure on the autism scale.

I actually would be quite shocked if they diagnosed me/cfs at this stage, but it seems one trigger and that would be it. I have read back through my other childrens diaries that i was told to keep by the doctors, and there symptoms were so similar at the beginning. I also had about a year before full blown ME when lots of symptoms started.

 

[Wonko]

I may be betrayign my ignorance here bu I thought according to the CCC you couldnt be born with ME - it being lifelong was exclusionary?

of course if XMRV pans out this may change with vertical transmission but as things stand atm....

 

[Athene]

Hi,
Coxy, what you described sounds like my son, who seems to have been born with CFS, i.e. symptoms that would appear to be on the autistic spectrum.
Al lot of the anger outbursts in his case were related to food intolerances and allergies. The autistic symptoms would wax and wane, alternating with more CFS symptoms like extreme tiredness (he's recently come out of a phase of sleeping 14 hours a day, at age 4 - NOT normal!)
The older he gets, the more his symptoms look like classic CFS and not autism/ADHD.

Tia, did you have other CFS symptoms when you were little? Tiredness is part of so many illnesses that you probably need a longer list of CFS type symptoms to be able to accept that diagnosis and rule out everything else. Though I presume you did have a huge amount of tests done?

By the way, do you mind if I ask how old you are now? It would be interesting to hear how the symptoms changed or developed as you grew up and what they are nowadays.

 

[richvank]

Hi, all.

It's true that ME/CFS is defined so far as an acquired disorder, i.e., not one that a person is born with, but which one gets later, after their birth. I'm surprised to read that you believe that you were born with it, Tia.

For what it's worth, I believe that ME/CFS and autism are fundamentally the same disorder, and that which one a person has depends on how old they are when they develop it. If they are very young, so that their brain has not yet fully developed, this disorder interferes with normal brain development, and the person is then ill with something on the autism spectrum. On the other hand, if their brain is essentially fully developed when they get it, they have ME/CFS. A person with ME/CFS has many of the same symptoms as a person with autism, but without the characteristic brain-related symptoms of autism. They do have oxidative stress, buildup of toxins, immune system dysfuction, and problems with the gut. It is debatable whether fatigue is present in autism, but it may be, just expressed differently. They also have some of the brain-related symptoms that are also found in autism, but not those involved with abnormal structural development of the brain.

Best regards,

Rich

 

[Athene]

Yes, I totally agree with Rich here.
I am convinced my son would have been severely autistic and his brain would have been hopelessly damaged if I had not started biomedical interventions when he was so young (only 2 years old), which most parents of autistic kids don't do. (Eg. In england you have to wait till they're 4 even to get a diagnosis, which means lots of irreversible brain damage has already taken place).

 

[taniaaust1]

I just want to correct something which was said here.

Autistic people do have food issues and are often very picky with their foods, may only eat certain things or have strange food routines.

My Asperger's daughter, she used to commonly sleep 14 hrs per due to the Asperger's, but she hasnt got CFS/ME. Asperger's kids commonly tire more easily then normal children.

 

[muffin]

My hair stylist has a daughter who was born with a genetic mitochondria disease. From birth on her mother knew something was not right with her baby. She didn't have the energy that her first child did and being an ultra observant mother she "KNEW" there was something wrong with the little girl. So, from birth on she beat on the doctors and took this baby all over the US to find out what was wrong. By the time she got to Duke, every person she saw told her there was nothing wrong with her daughter and blew her off. But, at Duke they listened, tested and found that this baby did have a genetic mitochondria disease/disorder and she needed true treatment. The mother finally got the diagnosis for her daughter when the girl was about 2 years old and after countless numbers of doctors. The girl does have a severe form of this disease and has been exhausted, sick, and lacking ANY immune system at all. They spent $25K for one single shot to boost her immune system since all the vaccines and boosters she had been given as a young child were not showing up at all. They knew her immune system was not functioning and she was sick all the time and missing tons of school. She also had memory and cognitive issues. You could tell that the native intelligence was high but something was not coming together for her. Well, she is now 14 and after tons of meds, treatments, vitamins, etc. she has finally gotten more normal. Her immune system is actually now working and she is shucking off viruses and other infections where they would have nearly killed her just two years ago. She has shot up in growth and her grades have gone from D's to B's as her memory and cognitive ability has improved. When I asked her mother if she had CFIDS she said NO! she has a severe mito disease. But I will tell you, that Mito disease sure mimics CFIDS in almost all ways. The girl didn't have pain but she was an near perfect poster child for CFIDS.

So, I would NOT assume that you were born with CFIDS. Instead, I would get to a doctor (go to Duke) and see if you too do not have this genetic mito disease. There are probably a number of other diseases/disorders that mimic CFIDS but are NOT a true CFIDS (whatever CFIDS really is). Rule everything out including the very rare diseases/disorders. Don't just assume. Get to the real experts, not the frontline internists or quacks, but the true experts in their fields and find out what really is going on with you. Now, it may well be possible you were born with CFIDS and your mother passed XMRV down to you via breast milk, close association, or via genetics (from either both parents), but I would still start first with ruling out the usual suspects and the rare and very rare diseases/disorders.

 

[HopingSince88]

The first thing I would do is get tested for XMRV. If it is positive, get your Mom and/or siblings tested. That will indicate whether this may have been passed to you from your Mom. Dr. Mikovits has stated that it is likely transmitted vertically, and that there are high titres of XMRV in breast milk.

 

[Karin]

Hi Tia, do you not think you could of triggered me with a virus you got as a baby/young child? Why do you think you were born with it what were your baby symptoms to make you believe that?

This is interesting to me as we have 4 children, 2 have had me since 8.5yrs & then got it after both of them & our youngest who is 6yrs is showing lots of symptoms and may have had me since going into hospital with a flu type virus when he was 3yrs old, the same virus i caught from him that triggered mine. We are taking him back to the gp on friday as he is having lots of angry outbursts and hyper sessions, inc tiredness, won't eat most food (no dinners of any kind)has said he gets angry when there is noise around (although he makes a lot of noise with all his anger), feels sick a lot, avoids going out if poss, avoids birthday parties etc.
Our other 2 chuilren suffered similar angry outbursts and crying episodes when they first got ill, it actually went on until they were both about 12 yrs and could control it better, i've nbeen told it's all to do with brain disfunction and young children suffer in the way mine have.
Are you familiar with any of these symptoms?

This sounds like typical autism spectrum issues. But that does not say anything about the causes, of course. It is unfortunately so common these days. These things can help a HUGE deal children having these symptoms: fish oil (e.g. Coromegas for kids, or any fish oil), a good multivitamin, probiotics, extra zinc. Just the fish oil can make a huge difference. Then the other thing is REMOVE all artificial food additives and decrease sugar. Avoid junk food. Really, artificial food additives (colorings, flavors, preervatives) can be very harmful for some sensitive kids. I strongly recommend giving it a good try, you might be floored with what you see.

 

[coxy]

thanks for the advise Karin but we already do all those things. If it isn't early me/cfs symptoms i'm wondering if it's inattentive ADHD which has some similarities?

 

[Tia]

Hi Athene,

Yeah it feels really lonely to seem to be the only one (?) born with this. But I've been like this since I was born: sleeping 16-22 hours a day, depending on how bad it is, musclepains and brainfog. I've fought like HELL to be able to go to school, work, tried classes and everything but it doesn't work because of the tiredness. At it's worst I was in bed for 22 hours a day, only getting up for a sandwich and bathroombreak and then back to bed, exhausted by the little "trip". They have tested me for everything they could think of..even mental illness such as depression and did a large investigation to see if there were any other mental issues, but found nothing.

The symptoms haven't changed, it's the way it's always been. So it's the same as when I was a child, yes. Sure there are more symptoms, smaller ones, I keep forgetting to mention them; I'm cold all the time, like the circulation isn't like it should be, and I feel faint when I stand up for a long time like in the shower. If I'm active and walk or move I can be on my feet for a long time but if I stand still I feel faint and have to sit down until it gets better. Happens in the shower alot so I usually run out to bed and lay down until I can go back and continue the shower. Can't really remember it was like that when I was a kid though so maybe that's new.. The faint thing started when I was 17, I am 32 years old now and it's ruining my life! I have a long list of things I want to do, I feel like crap being stuck at home when there are so many things I could be out in the world doing, so I just want to get rid of this once and for all.

Forgot to mention I haven't been tested for XMRV.

 

[richvank]

Hi, Tia.

Have you had testing that looks at the overall metabolism, such as a urine organic acids test, amino acids tests, and levels of metals in the blood or urine? A lot can be learned from these types of tests.

Rich

 

[Tia]

My hair stylist has a daughter who was born with a genetic mitochondria disease. From birth on her mother knew something was not right with her baby. She didn't have the energy that her first child did and being an ultra observant mother she "KNEW" there was something wrong with the little girl. So, from birth on she beat on the doctors and took this baby all over the US to find out what was wrong. By the time she got to Duke, every person she saw told her there was nothing wrong with her daughter and blew her off. But, at Duke they listened, tested and found that this baby did have a genetic mitochondria disease/disorder and she needed true treatment. The mother finally got the diagnosis for her daughter when the girl was about 2 years old and after countless numbers of doctors. The girl does have a severe form of this disease and has been exhausted, sick, and lacking ANY immune system at all. They spent $25K for one single shot to boost her immune system since all the vaccines and boosters she had been given as a young child were not showing up at all. They knew her immune system was not functioning and she was sick all the time and missing tons of school. She also had memory and cognitive issues. You could tell that the native intelligence was high but something was not coming together for her. Well, she is now 14 and after tons of meds, treatments, vitamins, etc. she has finally gotten more normal. Her immune system is actually now working and she is shucking off viruses and other infections where they would have nearly killed her just two years ago. She has shot up in growth and her grades have gone from D's to B's as her memory and cognitive ability has improved. When I asked her mother if she had CFIDS she said NO! she has a severe mito disease. But I will tell you, that Mito disease sure mimics CFIDS in almost all ways. The girl didn't have pain but she was an near perfect poster child for CFIDS.

So, I would NOT assume that you were born with CFIDS. Instead, I would get to a doctor (go to Duke) and see if you too do not have this genetic mito disease. There are probably a number of other diseases/disorders that mimic CFIDS but are NOT a true CFIDS (whatever CFIDS really is). Rule everything out including the very rare diseases/disorders. Don't just assume. Get to the real experts, not the frontline internists or quacks, but the true experts in their fields and find out what really is going on with you. Now, it may well be possible you were born with CFIDS and your mother passed XMRV down to you via breast milk, close association, or via genetics (from either both parents), but I would still start first with ruling out the usual suspects and the rare and very rare diseases/disorders.

I don't really know what CFIDS is, but I'm assuming you mean CFS? I can't afford to go to any specialists out of the country and I don't live in the U.S so i never heard of the doctor of which you speak. I can't put any more money into medicalcare because I simply can't afford it, my economy is almost nonexisting. I want to get tested for XMRV but there is no possibility in my country yet. So I'm waiting until it comes out on the market instead so the infectiondoctor can test me. Unless this Duke doctor can help me through my infectiondoctor..? We've tried with the scientist on ME here but he had many testpersons already and couldn't take on any more.

 

[Tia]

"The first thing I would do is get tested for XMRV. If it is positive, get your Mom and/or siblings tested. That will indicate whether this may have been passed to you from your Mom. Dr. Mikovits has stated that it is likely transmitted vertically, and that there are high titres of XMRV in breast milk. "



I wasn't breastfed but my mom probably has aspergers and very much so. She's behaved strangely all her life and I suspect aspergers. She refuses to see a doctor though, but she knows something is wrong with her and matches the symptoms of aspergers perfectly. I have no siblings.

 

[Tia]

Hi, Tia.

Have you had testing that looks at the overall metabolism, such as a urine organic acids test, amino acids tests, and levels of metals in the blood or urine? A lot can be learned from these types of tests.

Rich

I don't know.. They just said at the hospital that they've tested me for everything, but I doubt they test for metals there. Can one be born with too much metal in the body?