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Born with ME

Discussion in 'General Symptoms' started by Tia, Aug 5, 2010.

  1. anne_likes_red

    anne_likes_red Senior Member

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    Not Rich here :) But just jumping in to answer that - yes you can be born with a load of metals, (most especially if you're an eldest child so I've read). Metals are passed to the developing baby via the placenta.
  2. Tia

    Tia Senior Member

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    Hmm, I'll look into that. Sounds interesting because then they might be able to DO something about it and quick. By the way: do any of youhave the fainting-thing? Haven't read anything about it but talked to a woman here who had ME and she said it had something to do with the bloodpressure and that I should get a position-test done? That they should check my bloodpressure when i layed down and stood up to see the difference.. Anything you guys heard of? She also mention saturation in the blood, to get it checked.
  3. Wonko

    Wonko Senior Member

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    the "fainting-thing" sounds like OI/POTS - there are lots of people on here with it/them - and lots of threads on it so hopefully you should be able to get some info, decide if it matches your symptoms in that area (it certainly sounds like it may) and find out what others have tried thats helped them.

    I wasnt intending to suggest you didnt have ME - I was mearly pointing out that according to the most accepted (by pwME) definition it being lifelong is exclusionary - I'm not in a position to know if this exclusion actually makes sense - and in light of the probable connection with a vertically transmissable retrovirus it may not - which could put you in the ludicious position that you may have exactly the same things wrong with you as a significant number of pwME's caused by the same thing - but not actually have ME by defintion - and they think we're nuts!!
  4. richvank

    richvank Senior Member

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    Hi, Tia.

    If the hospital has run only the usual conventional medical tests on you, it's unlikely that they would have measured the levels of the metals. Unfortunately, the conventional medical tests were not selected with ME/CFS in mind. I don't know in which country you live or what testing is available to you. In my opinion, the best test panel to run for CFS is the methylation pathways panel that is offered by the Health Diagnostics and Research Institute in New Jersey, USA, and the European Laboratory of Nutrients in the Netherlands. This test panel looks for what I believe is the core issue in the biochemistry of ME/CFS, which is a partial block in the methylation cycle, coupled with glutathione depletion and draining of the folate metabolites from the cells. If a person has this core issue, then in my opinion they have ME/CFS, and there is a treatment for it that is non-prescription and not very expensive. This treatment has helped most of those who have tried it, and a small number have reported complete recovery. However, most have not recovered completely and the challenge is to find out what else needs to be done for them. This needs to be done individually, because not everyone with ME/CFS has all the same additional issues.

    You mentioned fainting in the shower. This is very common in CFS. It is caused by the fact that the total amount of blood in the person's body is less than normal. When they take a shower, more of the blood is sent to the skin in order to regulate the body's core temperature, especially if it's a warm shower. This does not leave enough blood to go to the brain, and that's what causes the fainting.

    The low total blood volume results from a condition called diabetes insipidus. This is not the same as the more common diabetes mellitus, which involves blood sugar and insulin. Rather, it is caused by insufficient production of a hormone called the antidiuretic hormone by the hypothalamus/pituitary in the head. This has been measured and found to be low in people with ME/CFS. In my hypothesis, called the Glutathione Depletion--Methylation Cycle Block hypothesis for ME/CFS, it is caused by depletion of glutathione in the hypothalamus/pituitary. In this hypothesis, there is also a genetic component to ME/CFS. The fact that your mother appears to have Asperger's syndrome would be consistent with your having inherited a genetic predisposition from her. There are many cases of ME/CFS and disorders on the autism spectrum occurring in the same family.

    If you would like to read more about this hypothesis and the treatment based on it, this information can be found at www.cfsresearch.org

    Best regards,

    Rich
  5. Mya Symons

    Mya Symons Mya Symons

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    Could be possible

    Hi Tia. My husband and I have CFS and Fibromyalgia. My son was diagnosed with Fibromyalgia a few years ago and is starting to have signs of CFS (i.e. sleeping a lot and low fevers). There are also several relatives on my husbands side who have CFS and/or Fibromyalgia. (diagnosed by different doctors). I started out having periods where I would get very swollen lymph nodes all over, a stinging headache, sore throat, fatigue and low grade fevers. I would go through this for anywhere from a month to three months and then it would go away. This all happened before my son was born. Later, I had one of the worst flare ups I have ever had with all those symptoms and a new symptom of fibromyalgia type pain and joint pain. After this happened, I started to notice all the other symptoms: feeling dizzy when standing up (drop of blood pressure while standing up from a sitting postion); sometimes low body temperature; overall low blood pressure; irritable bowel and bladder; balance problems; twitching; etc. These latter symptoms happened after my son was born; however, I am convinced that I passed this to him when I was pregnant. Although, I don't have any proof of that. His symptoms started a few years ago with horrible headaches and then seizures. He was later diagnosed with Fibromyalgia because he had all the pressure points. I do believe it is possible to be born with this virus, and I think for some of us the virus lies dormant until something triggers it. The triggers could be trauma or stress or another illness. There are also people who seem to get sick right after coming in contact with the virus such as people who have gotten sick right after a blood transfusion.

    I think that someday we are going to find out that whether or not you get sick with XMRV and how long after you are exposed until you get sick depends on heridity. That would explain why my daughter is not ill and no one on my side of the family who has had contact with my family is ill.

    (All of this is just opinion. There is no proof of it as of yet. Lets hope or pray they someday they give Whittmore Peterson enough financial grants to study XMRV further and figure this stuff out along with the proper treatment.)
  6. ixchelkali

    ixchelkali Senior Member

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    Tia, that's really rough. If XMRV turns out to be a cause, or the cause, of ME then it seems quite possible that you could be born with it. I'm afraid that like all of us you'll have to wait for the research to know. When the test becomes available it would certainly be worth finding out if you have XMRV. But in the meantime, I do think it would be a good idea to look into mitochondrial disease. The symptoms are so similar, and mitochondrial disease is typically present from birth.

    The United Mitochondrial Disease Foundation has a website at http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm. There is also an organization in the UK for professionals working with Inherited Metabolic Diseases, the BIMDG (http://bimdg.org.uk/); maybe they could tell you how to go about finding someone knowledgeable about mitochondrial disease in the UK.

    I'm not saying you don't have ME. But since ME is a diagnosis of exclusion, it seems prudent to check for mitochondrial disease, especially since one thing that distinguishes it from ME is that it's present from birth. And it's like to be a while before you can get tested for XMRV anyway.

    But whether or not you find others here who have been sick from birth, you have found a group of people who understand what it's like to live with the symptoms, people who can appreciate what you're going through.
    :sofa:
  7. leaves

    leaves Senior Member

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    I'm xmrv + and have had (mild) cfs since birth, especially cognitive stuff, progressively going worse
  8. Tia

    Tia Senior Member

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    Ah, i see your point. POTS I'm familiar with and it seems to match what I've got. Just been some time since I last read about it so I'd forgotten, memory isn't the best. pw ME's newthough.. I'll have to look that up. But I'm waiting with tension for the XMRV-test because of every illness I've ever read about, NONE has made sense or fitted in om what I've got..exept ME so if it isn't that either, I'm lost.
  9. Tia

    Tia Senior Member

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    That's true.. They've done all kinds of tests on me..Brainscan, scanned my body, done mental tests, put me on antidepressants (whick made me more tired so I'm off them now) bloodtests, but as someone mentioned, just the conventional ones.. there have ben so much done over the years that I an't remember everything but they find nothing. I wonder if these tests that exclude poisoning aren't very expensive? because money is a big issue right now and I can hardly aford food and cannot pay for any tests.

    And yur last words about having found people who know what it's like..they really warmed. It's so rare to have anyone understand. Most people just shake their heads saying: -Nope, never heard of anything like that. Are you sure it's not depression?" One gets so tired of hearing that.
  10. Tia

    Tia Senior Member

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    Holy S**t! I recognize that! I have balanceproblems too, when I'm out and about I can start viggeling (spelling?) for no reason and my bladder..I keep getting urineinfections a coupla of times a year, they have scanned my bladder and investigated that because of this but fins nothing exept fluid behind the bladder but said that was normal and could be menstuationblood that will dry up eventually.
  11. Tia

    Tia Senior Member

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    So THAT'S why I keep feeling faint in the shower and the bath. My skin gets really red, like normal of course, and a few minutes after, I have to lay down immediately to avoid faint. Wow, I never would have put those two together, one just thinks it shouldn't affect oneanother, right?

    I also put together aspergers syndrome and ME since Ive read about the research that aspergers is one outcome of XMRV and ME another, it depends on when you contract it and where it is absorbed..? If absorbed is the right word but you know what I mean.. How it develops while the fetus grows in the womb.

    From what I hear.. They don't do that treatment that you describe in the country where i am located. (Don't wanna give away the country.) So I'm waiting for the XMRV-test. But the question is if it ever comes out? They said from WPI that it would be available in the spring of 2010 bu nope..August now and nothing. Will it even come out?
  12. Tia

    Tia Senior Member

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  13. paddygirl

    paddygirl Senior Member

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    Hi Tia,

    You mentioned menustration in an earlier post, and something about excess blood 'drying up' eventually.

    This sounds like a condition that is very common in ME/CFS called Endometriotis (not sure about that spelling) Its a condition where women bleed outside the womb, this blood dries and in doing so can form lesions. These lesions can attach organs to one another. This can be very painful, for example with the bowel and passing stools. It can be treated successfully with laser surgery. It's seen as a failure of the immune system, where the body attacks itself.

    I had treatment for it and after the surgery was put on the pill to minimize my periods. It's no longer an issue now as I'm through the menopause, but my 30 year old daughter is being tested for it as her periods are unbearable. I strongly suspect she has ME/FM. I breastfed her and she had glandular fever (mono) in her teens. Her knees are aching a lot and now her elbows. She sleeps a lot!

    She just had a scan but nothing showed. The only true test is with keyhole surgery. If your periods are very painful it might be worth finding a good Gyney. No need to suffer!

    Wishing you the best x lots of info on the web on this, I hope the info I gave you is accurate but best check it out. x :Retro smile:
  14. Athene

    Athene Never give up

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    Hi Tia,

    In case you are fed up of stopping half way through a shower, here's how I do it: Make the water as cold as you can stand it. If you start off with it fairly warm, you can gradually lower the temperature. I also leave the bathroom door and window open so there is lots of fresh air and no build up of steam. (Except not in mid winter of course!)
    Also when I am really tired I have a bath so I can lie down, again luke warm not hot. Sometimes you faint when you stand up so you have to call someone else to stand by as you get out, or else drain the water away before you stand up (which I really hate). But at least you can stay in there as long as you like.

    Where do you live? Are there ticks in your area? Have you been given a proper Lyme test (I mean one done at a specialist centre, not a stupid ELISA test ordered by your family doctor). Lyme is a disease which is definitely passed through the placenta so you could have got it from your mother even if you were not breast fed. It is known to cause autism spectrum symptoms in children through the symptoms are unpredictable and some people are struck more in other organs than the brain (heart, gut, joints etc).
    As far as I can tell, the only discernible difference between Lyme and CFS is that people with Lyme more often have periods of good remission than people with CFS (though not always), and people with Lyme more often have weird bruising and joint pains than people with CFS (though again, not always).
    Just a suggestion.
  15. Tia

    Tia Senior Member

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    Oh, thank you for the advice! I've been on the same track as you precisely with endometroisis, and my periods ARE very painful but not the the point where I faint or feel sick or even throw up as some do, and they saw nothing abnormal on the ultrasound so I guess it's ok then but yeah, I've thought about this to. It's not abnormal in any other way exept that it hurts like a mother***... And of course I whine alot. ;) But the dried up blood IS weird and I dont trust the doctors here at all, they seem to be totally clueless to everything that's not obvious really. There are SO many sick people in this town (I'm located in scandinavia) and they never get better, it's everything from their knes to ..backpain to bla bla.. But the doctors, i don't know if they don't want to help or if they're incapable of helping but it seems weird that so many are sick in different conditions, one sees people in wheelchairs all over, just yesterday I counted 20 wheelchairs in 3 hours. :S That CAN'T be normal. We're not that large of a city either so..
  16. Tia

    Tia Senior Member

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    Haven't had a tic in my life but the cat keeps coming home with them though. ;) Good tip about the shower, just like you say, as soon as it's too warm water and/or steam, the fainting starts, so lukewarm I've finally leared is better to avoid it.
  17. urbantravels

    urbantravels disjecta membra

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    Tia,

    I have endometriosis too. It does NOT show up on ultrasounds because endometriosis is basically a thin layer of cells, I've seen it described as "like a coat of paint," so you can't see it the way you can see growths, tumors, etc.

    I had symptoms that mimicked a urinary tract infection that kept recurring. But repeated testing did not always show an infection. Because urinary tract infections are so common (and I've certainly had them plenty of times myself), I was just handed antibiotics again and again, until a gynecologist finally asked me if the pain was recurring on any cyclical basis. Turned out that it was - at mid-cycle and then again before my period. I had an ultrasound, which showed nothing particularly abnormal except some "fluid". I had a cystoscopy too, which showed absolutely nothing abnormal inside my bladder or urethra (no interstitial cystitis, etc.) Though I have not had laparoscopy, which is the only way to confirm the presence of endometriosis 100%, the working theory is that my endometriosis has implanted, among other places, somewhere on the outside of my urinary tract, where it causes this recurring pain. (Or did, before I went on the pill.) Endometriosis can wind up all kinds of places inside your lower abdominal cavity.

    Many women have both endometriosis and CFS. It's worth looking into.
  18. Mya Symons

    Mya Symons Mya Symons

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    Regarding the urinary tract infections. I had them for years and had all kinds of test. They couldn't find anything wrong with my bladder or my urinary tract. A couple of years ago my urinary tract infections went away and haven't come back yet. My son and I also have problems with reoccurent sinus infections and ear infections. He has had to have surgery.


    My sister-in-law has the worst case of CFS/ME in the family. She gets urinary tract infections so bad that they spread to her kidneys. She also gets Kidney cysts and stones. She has had to have her ovary removed because of cysts and she had such a big problem with her lymph nodes swelling and getting cysts that she had to have some of her lymph nodes removed. Most of what was removed was under her arm pits. She has also had infections so bad that she has been in the hospital for sepsis more than once (infections that have spread to her blood). This is why she is seeing an infectious disease doctor. Things for her were so bad that her doctors finally decided she must have some type of infection lowering her immune systems ability to function. However, they never did figure that out and she is convinced that her illnesses are because of past trauma.
  19. taniaaust1

    taniaaust1 Senior Member

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    Good POTS info at following site http://www.dinet.org/pots_an_overview.htm If you do have POTS and start treating that part of the CFS, it can make quite a difference to things. As long as i dont flare my POTS up, Im fairly functional. POTS causes many symptoms when its flaring up. (not sure if flare is the right word or not.. or maybe i should be saying POTS attack, its symptoms can really come in and hit).

    i suggest to not stand in the shower.. when my POTS was bad, i used to shower sitting on the floor (and crawl out of there when finished). You could also use a bath chair. As the other said.. avoid showering in too warm water as heat is a trigger for POTS. I used to have my shower nice and warm but everytime dizziness started to come in more.. I'd turn the shower onto cold for several seconds (as much as i could bear) then just put the temp up a little more but keep it cooler. (and keep switching it back to cold). That allowed me to stay in longer.

    Try to learn to manage the POTS better (eg increasing fluids etc) and this should be a help.
  20. Tia

    Tia Senior Member

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    Interesting.. Although I only get UTI after uhm..intimate relations. God I hope I don't have endometriosis to, but it would explain my cramps during the periods. Although I've been in pain since I first had them as a teenager .. It wouldn't be like that with endometriosis, would it? Although the last 3 years or so, I feel a pressure and get soar over my bladder when it's full, like when I've been sleeping, i connect the fluid to this.. It's something I really would like to get rid of because it's so uncomfortable.

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