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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. Allyson

    Allyson Senior Member

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    Hi Sushi ,

    thanks so much for the very interesting link; a great summary.
    When you say:


    [Standing] is only one factor of many that causes difficulties.

    this is my issue so I wonder do you know has it been tested and how?
    What are the other factors?
    And how do we know what coused what .. is standing up issues may cause all the other s teo eventuate?
    (Lets exclude viruses here to simpliify things.)


    Many thanks again, most interesting link and just the ikind of info and argument I am after, as they are the things I am asking too.
    Best,
    Ally
  2. alex3619

    alex3619 Senior Member

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    When I am rested and not in a crash I do not have OI signs. I have NMH but also high blood pressure, which occurs in a subset of patients. This means my bp is normal or high most of the time, but can crash alarmingly at other times. I have lost count of how many stairs I have passed out on. I think this might be because, when rested, I am capable of an adrenal response, but when exhausted that disappears and my NMH becomes very apparent. So OI signs can be masked. However I failed my TTT dismally.

    There are times when OI becomes my dominant feature, and others when I don't notice it at all. Mild to moderate exhaustion, some degree of brain fog and adrenaline intolerance seem to be major and constant features though. Even flu-like symptoms are not constant for me, though in the 90s they were for a while. They do however occur in most crashes.

    I think a lot of our flu-like symptoms are based on immunogical responses, and may or may not be connected to pathogens depending on the individual case.

    Now I am not convinced that EDS is a cause of ME, or a subset, I only think it might be. However, lets presume its causal. We have been discussing the brain a lot. How about the gut?

    Connective tissue disorders could lead to increased intestinal permiability. That would lead to higher toxin load at the liver. In time the liver would be overwhelmed, and probably result in low glutathione. At that point toxins like LPS would spill out into the blood stream, resulting in widespread immunological insult. Worse, and I want to blog on this next year, cells like gamma delta T cells are likely to migrate out of the gut if there is LPS elsewhere. These cells are critical to gut repair and immune tolerance. Without sufficient numbers and function you can expect increased gut immune issues, and reduced gut healing, resulting in even worse intestinal permiability issues. A vicious cycle then exists. This is one of the models of ME I am playing with, though the initial gut permeability issue could be from a gut virus such as an entervirus, it does not have to be from a genetic disorder.

    Similarly a failure of glutathione availability from some other cause would feed right into the above model, leading to a similar result. This might explain why people with genetic defects in the methylation cycle are more vulnerable.

    Bye, Alex
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  3. Allyson

    Allyson Senior Member

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    Hi Sushi, and thanks.

    My contention here is that we may not KNOW we have OI.

    I base that on the fact that i found out i had it only a year ago yet looking back i realise I have had it over 20 years - perhaps all my life.

    Also on the fact that is is VERY hard to test for.

    My doc says a postural drop may not show up in many people who have it until they are in their 80s. !

    I have my BP tested every appointment lying and standing over about 15 minustes and only once has a 19 point systolic drop show... all other evidence is symptomatic.

    sudden onset I do not know about, but it may be due to not picking up the symptoms earlier .. or the body adapting for a good while then suddenly not being able to cope.

    How do you detct a suden onset of OI? I have not heard of anyone saying they had a sudden onet of it. and I know people mask their symptoms with caffeine including cola and also alcohol and other recreational things is common. If they then devlop alcoholism as some I know have done they may never get back to the point of looking at their OI symptoms.

    Immune sytems stuff could result form CSF and brain issues , but also from gut issues - gut is also connective tissue and most of our immune system is there I believe. I realis now Alex has said something along these lines much more coherently than I have; thanks Alex.

    So that would be a separate thing form the standing issue, but still connective tissue disorder.

    The thing is my doc's notes on EDS ( form a medical conferenc on it had under the heading gut ....just the word "everything" .. meaning all possible gut problems are a feature of EDS .

    more soon. run out of mental puff sorry, thanks again for the feedback
    Ally
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  4. Allyson

    Allyson Senior Member

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    the other issue Sushi, is that when you stand up and the brain does not get enough blood it releases adrenaline.
    This immediately restricts the blood supply to the gut as it rediverts it to essential organs and muscles.
    If this happened say 500 or more times a day - as it does for anyone with OI apparently. anytime they stand up..who knows what damage it would do to the gut.

    presumably they have measured the .adrenalin release...my doc assures me that is what happens. I know cortisol levels can be measured quickly with an oral saliva swab.

    I also get constant bactrerial infections - usually chest and throat.. but i do not get ill if i stay in bed - ie horizontal.

    BTW thanks to everyone for putting up with my bad typing. I get a shock when I re- read my posts and I then re- edit them . (I have read it is a symptom, of ME .. fine motor skill loss maybe )... but if i corrected as i go I would never get anything finished to post. Apolgies and thanks again.
    merylg likes this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    Not sure what you mean by "has it been tested"? -- have other abnormalities been tested for?

    If so, yes, in considerable depth by a number of ME doctors. I have had a range of these tests, but as research progresses, more interesting leads to unraveling this mess emerge--and eventually more things to test! They obviously haven't found everything yet.

    As far as the abnormalities they have found, there are too many to discuss in this thread--it would become the whole forum! Keep an eye on the active threads and you will see many of the relevant discussions.

    I don't think we can exclude viruses, for simplicity, since a number of researchers suspect that they play a significant role in causation.

    We don't know "what caused what," except perhaps by timeline--what developed first. In my case toxic exposure, viral and bacterial infections, immune dysfunction, PEM (whatever caused it) came before OI. OI was about the last thing to manifest. Those are clues, but don't prove anything and there are certainly unknown factors too.

    Sushi
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  6. Allyson

    Allyson Senior Member

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    Oh thanks Meryl, fantastic, I was just wondering about that and will definitely do it.
    EWhen I was tested for coeliac they did the prelimiary screen and then a genetic blood test - just like a simple blood pathology test and form that determined that i did not have the gene - so no need fo rhte bowel biopsy. That was cool.

    thanks again, so pleased, i will send those genes to my docs now and hope we have it here in Austrlaia (among all the crocodiles)
    merylg likes this.
  7. Allyson

    Allyson Senior Member

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    Here I meant has standing as the cause of ME been tested.

    By which i mean studies where people, say, do NOT stand or sit upright and what happens to them then.

    In my case I would make a full recovery -ie become asymptomatic - until I stand up again... I don t know if that is the same for others but that iswhat I would like to know, and that i swhat I am putting ourt a coll for here ... for people to observe that element alone and give feedback. For example, if you stay in bed for 3 entire days doing just the basics like bathroom visits do your symptoms subside? fully or in part ?

    As to excluding viruses, I mean for the sake of argument here as that is a whole other complex issue ... but interestingly one that has not been proved after many years of research. (And I reiterate that just because you ME symptoms manifest at the same time as viral infection appeared does not mean that the infection caused the ME.)

    As to :
    We don't know "what caused what,"

    that is what I am trying to ask and investigate here ... well a small part at least.

    thanks so much for the great input, and the thought behind it.
    it is very much appreciaited.
    cheers,
    Ally
  8. taniaaust1

    taniaaust1 Senior Member

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    I had no OI at all in the beginning of the illness and just flu like symptoms (standing was no issue to me at all back then). In my case the OI seems to have come in only after I had ME/CFS long term so I believe the ME/CFS damaged my autonomic system over time or that system in my body just went down suddenly after long term ME.
    Allyson likes this.
  9. justy

    justy Senior Member

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    Im finding it hard to keep up with this thread, so just a simple post from me. I cant see how standing up is causing all the M.E symptoms. I do not have OI. if i do and dont know i have it then i have it very mildly. I do not like standing in queues. I can not walk for an hour, even slowly as i use a wheelchair for longer trips. I can sit upright and feel ok as long as im not walking for too long. I can slow walk for short periods - is fine.

    My symptom complex as a whole is very immune/virus/brain dysfunction and now gut as well. I have swollen and sore joints. I do not have many pain issues except flu like malaise and eye pain issues.

    Alcohol leg pain - is sharp and immediate, then becomes nasty throbbing ache, then subsides as i drink more. Its horrible and i dont drink anymore anyway.

    I have had Mito fucntion tests (Acumen lab) and they show problems with mitos, problems with translocator protein, very high cell free DNA, vitamin and mineral deficiencies, and blockages of gene expression (MN SODase)
    How do these findings fit with EDS?

    All the best, Justy.

    ps, i just wanted to add that just laying down does not work for me - i have to rest my brain. Right now i am propped up in bed, but have been on the computer reading and typing for half an hour which has made my head swim and feel fatigued now. I know i will now feel better if i switch off the computer and get up and move around a bit.
    Allyson likes this.
  10. jonnyboy

    jonnyboy

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    Not sure how any of these findings fit with EDS or why? But I have EDS3 and mito dysfunction.

    When i got ill last year i did order the mitochondrial profile from dr myhill. Showed I had problems with mitos, blockages of gene expression and blockages with in/out of translocator proteins, raised cell-free dna and other probs. A the time I was rated 3.5/10. But I'm worse now a year and a half on. I wasnt able to see dr myhill in person (think she is over subscribed), so not able to do her b12/magnesium protocol as my GP refused to help on that part.

    Anyway with prattling on too much, i got to see the one of the leading guys in the UK about my autonomic issues, who diagnosed me with EDS 3. Said my autonomic and autonomic and fatigue probs are common with eds 3. Though he did admit they (as in the medical world don't know why this is). As mentioned in my post a couple of pages, I had no idea i had eds3 prior to the consulation, did not consider myself a candidate for it. I think the picure painted on the internet of very mobile joints, very stretchy skin etc are of the more extreme cases. My case is of eds3 is more mild and subtle.

    Incidentally the lying down thing doesnt work too well for me either. It seems to help with the fatigue part and headaches but I also get supine hypotension (blood pressure too low when lying down) so if i lie down too long like a sleep, I feel terrible from that too.
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  11. Allyson

    Allyson Senior Member

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    Hey Justy, thanks

    Just a quick reply to one part for now....the idea of not liking queues is a very typical indicator of OI so you may indeed have it; ( healthy people have no trouble with that)

    How long would you feeel comfortable strolling/standing for ?
    Does driving worry you if you can drive .. or sitting in a car?

    Have you had a halter monitor test to test oyour hartbeat and BP over 48 hours?

    Can I ask where u use the computer... laptop in bed or at a desk?

    More soon,
    thaks again,
    Ally
  12. Allyson

    Allyson Senior Member

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    Thanks Jonny , thanks for the feedback - interesting.

    The vitamin B12 IM you cam buy over the counter here in Australia at least and you can get a home nurse or doctor to give it to you. Or you could try another GP. My Gp clinic nuree give me the shot when I am well enought to get there ( there is no charge for this) otherswise RDNS comes to my home for a very small charge.I find it helps enormously. I read that it boosts blood volume and I find that anything that does that helps me ... eg also clonazepam.

    More soon,
    'Ally
  13. Allyson

    Allyson Senior Member

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    Interesting thaks Kish mash... was it you who posted that video clip orf the MS patient with the greatly imporved woalking and moving after the shunt to the braiin... that was amazing.
    Someone here in Aus has halso just had a stem cell transplant which is said to give 50 percent imporvement; I am waitingot find out details and will givei it a go if I can afford it. Anyone els know anything about them please? I ave seen them work really well for MS. Autologous type used here now- stem cell extracted from your own abdominal fat the re-inused into your veins.
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  14. merylg

    merylg Senior Member

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  15. justy

    justy Senior Member

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    Allyson, this is a very interesting thread - anyhting that makes us think about misdiagnosis is good in my opinion as misdiagnosis in M.E/CFS is very very common - especially in the UK where testing is witheld by the NHS. I woulod have to be pretty rich to have all the diseases i am interested in ruled out.

    My question here is what is the purpose of your thread? could you clarify for me. Do you believe that M.E IS actually misdiagnosed EDS or that SOME could have EDS rather than M.E. I understand that you seek to educate and discuss. Thats good. Some people may see themselves in this thread and get a proper diagnosis, whilst others do not see this as being relevant to them.

    I gather you have a diagnosis of EDS now. Do you belive than that you also have M.E/CFS alongside? or that it expalins all your M.E/CFS symptoms so that you no longer consider yoursefl a person with M.E/CFS? I think it would be important to clarify this so that i can set the discussion in context.

    Thanks, and all the best, Justy x
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  16. MishMash

    MishMash *****

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    Justy,
    The purpose of Allly's thread has been very clear, to me anyway, from the first post. In her first post, she said her doctor had explained to her that stretchy vein illness (EDS or CTD of some other name) causes poor blood circulation to the brain. The brain views this as an injury and increasingly produces inflammatory cytokines and hormones, because it thinks the body is out of homeostasis. This results in a host of reactions.

    Foremost among them is adrenal shock, which can cause a huge number of the insidious symptoms we all have. This could easily account to our aversion to smells, alcohol, exercise intolerance, or just the series of mysterious fatigue collapses or insomnia we all have. Such shocks can result in viral reactivations: the only real immuno-marker that docs can agree on. That's a huge clue to me, because these reactivations mainly occur when the body's homeostasis/HPA axis is under stress. It appears to me a very seamless and cogent hypothesis.

    The only other theory that has made sense on PR was Dr. Van Konnenynburg's dynamic of glutathione depletion and oxidative stress. But that too could just be a result of a body out of homeostasis. Resulting from an extremely common connective tissue disorder. So in my eyes, Ally's doctor's opinion could easily explain oxidative stress.

    There has been no money for researching this hypothesis, so no, she can't point to critical mass of studies supporting her argument at this time. But there are no other critical masses of studies pointing to any other causes either. Scientifically we are at square one, with the mainstream medical community. No money has gone into investigating the curious links between CTDs an FM/CFS/ME. A lot of money has gone into researching any number of viral hypotheses. But all they have proven is that ME patients have idiopathic stressors, resulting in reactivations. Nothing more.

    I would like to point out, the PR site still has an XMRV forum. Which is fine with me that there are people who still believe in a mutated xeno-tropic retrovirus causing all our symptoms. But to me, that would be like having a forum on "Leeches, and How They Stablize Blood Humors". Or "Are Witches Causing Plagues, and What Should We Do about them?" But even then, I would not criticize them. So basically I find it strange that some people are bothered by Ally's entirely believable hypothesis, but don't question other ideas.
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  17. justy

    justy Senior Member

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    Hi Mish Mash, thank you for such a great synopsis of the thread. I'm sorry that you felt i was being critical and your reply was a tad aggressive. I have tried to keep up with this thread as i am very interested in it, but i did not clearly see what Ally was getting at. I see that you feel Ally has been diagnosed with some kind of CTD (in this case EDS) and that she is suggesting that it be considered that M.E/CFS could be a CTD, in much the same way that some feel it could be an autoimmune disease or others an AIDS like variant or others see it as a Mast cell activation disorder.

    I hadn't clearly grasped that this was what she was putting forward - like most here cognitive dysfucntion can at times be severe and information hard to hold onto and process.

    I entirely agree re the XMRV forum.

    My one question would be are there any researchers in the field of M.E who have seen CTD in PWME and have sought to explain this.? i know i have read elsewhere that EDS can overlap or be co morbid, but im afraid i cant remember where i read this - there is an old thread i think, which i will try and dig out.

    I just wonder why this hasnt been much followed up on by the leading doctors in the M.E field - or mast cells either.
    I suspect it is because M.E, or more specifically CFS is over diagnosed and the proprtion with M.E is very small and that most others have any number of other diseases, from MS and Lupus through to CTD's and Mast cell disorders. Only with a rigorous work up such as given by Byron Hyde in Canada can we ever be more certain of our diagnoses.

    All the best, Justy x
  18. justy

    justy Senior Member

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  19. MishMash

    MishMash *****

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    justy
    Sorry for the overly aggressive tone. I was just curious why you were questioning Allyson's decision to post at all. But I misunderstood you; your intentions were genuine. So thanks for your patience.

    I won't claim to speak for Allyson, the originator of the thread, but I think many of us are "proselytizers" of certain points of view about the origins of ME/CFS.

    I use the word proselytize, because nobody really has strong evidence to back up their basic theories: be it HHV-6 and a viral load, malfunctioning Mast cells, enteroviruses, XMRV and the list goes on. We have shreds of evidence, both circumstantial and anecdotal. Very little scientific.

    PR is a market place of ideas. I personally reject the theories that seem weak (though the member may be completely honorable and well-meaning), and am convinced by the ones that seem well-grounded. Upon reading Allyson's doctor's theory I was immediately converted.

    I believe CTDs (in their many, many forms) to be the root of a 'large sub-section of ME/CFS' because:

    - Many of us have CTDs, or family members; it is something my mother and grandmother had;

    - It is a relatively common disorder; even though the so-called doctor's office tests are primitive;

    - It is a simple answer, and science history teaches us that Ockhams Razor cuts through the chaff, and usually chooses the simplest answer as the most likely;

    - And, personally, back in the 90s I used to go to CFS support group meetings, and met many folks who came and went. And frankly CTD seemed one of the few things that unified us.

    So for me it has been anecdotal- my observations and experiences + Ally's doc's elegantly logical explanation. I don't know why there hasn't been more research on this, seeing how there is a Nation EDS advocacy group, and there are several patient youtube videos on this subject. Perhaps in the wake of the isolation of the AIDS retrovirus, researchers just projected that "all chronic illness is infectious."
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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    For me, it is the "proselytizing" aspect of posting on the forum (in this or any other thread) that weakens what may be good arguments. An objective presentation of either research, experience, or personal theory--without trying to "convert" others--goes a much greater distance for me.

    I would guess that some members (who would actually be interested in a discussion of a certain topic) will dismiss it and no longer read the thread if the discussion becomes an attempt at persuasion, which can easily ruffle feathers.

    That said :), here is a link to the Ehlers-Danlos Foundation's newsletter, "Loose Connections," for anyone who is interested.

    [​IMG]

    Welcome to the Winter issue of Loose Connections, the magazine about living with EDS. Published in PDF form, this issue brings you a wealth of information for EDSers.

    This Loose Connections includes an interview with Dr. Mark Lavallee, poetry and art from our EDS community, and the annual list of our wonderful donors, along with other medical and foundation news.

    Your copy can be downloaded through this link.

    We hope you have a happy holiday, and thank you for your continued support of EDNF!

    Sushi

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