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Does this sound like POTS?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by jonnyboy, Oct 14, 2011.

  1. jonnyboy

    jonnyboy

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    Hi all, this is my first post on the forum, although I've been reading on and off for a while. I live in the UK, and probably like most on here feel I've been completely let down by the health care system I once thought was so good.

    I became unwell earlier this year, with what was later to be diagnosed as CFS or ME. The illness have has hit me pretty badly and I have been unable to work at all, thou my GP seems keen to try and get me back to work. (He is a bit old school, has suggested I was imagining some of my symptoms and was suprised that the anti-depressants he gave me did nothing for any of my symptoms)

    Anyway on to the POTS bit, my most disabling feature I would say is my inability to stay standing upright at all for more than perhaps 30 seconds without starting to experience discomfort. I can stand for longer maybe 10-15 minutes still, but the longer I do it, the more light headed i become and the worse I feel. I have tried at length to explain this to my GP, but either he doesn't care or just doesn't know. He just says it is fatigue. I'm 100% sure it isn't fatigue as I don't feel tired standing up, just very horribly ill. Thing is I can walk for perhaps up to a mile, well at least a 15min walk, provided I keep moving. The symptoms are so much worse if I stop walking, and then I have a huge huge urgency to sit down. So its not really fatigue that is limiting me, its some sort of orthostatic intolerance. Problem is no-one is willing to test me out for this. All my GP did for me was take my blood pressure after I had been standing for perhaps around 2 mins and declared it hadnt changed, so kind of decided at that point i was imagining things. I was probably moving around too in his office, so it wasn't taken with me totally stationary.

    About 3 months ago, I ordered Sarah Myhill's mitochondrial tests, which indeed did show I wasnt in a great way. I scored 35% I think, and again my GP dismissed these tests, saying you will find vitamin deficiencies in anyone. Unfortunately Dr Myhill is inundated with patients so couldnt see me, so I havent been able to undertake any of her protocol as my GP wouldnt support any of her recommendations, and I've no-one to help show me how to do the injections she recommends.

    Here are my results from the Mitochondrial tests:

    ATP levels 1.85 (normal range 1.6-2.9nmol/10^6) comment: low normal
    Ratio ATP/ATP Magnesium 0.52 (normal range > 0.65) comment: deficient
    Ox Phosphorylation 62% (normal range > 60%) comment: on slow side due to blockages
    Vitamin B3 16.5 (normal range 14-30ug/ml) comment: borderline deficiency
    Co-enzyme Q10 1.60 (normal range 0.55-2.00 umol/L) comment: normal
    Translocator Protein Out 37.6 (normal range >35%) comment: borderline
    Translocator Protein In 20.5 (normal range 55-75%) comment: moderately blocked
    Mitocondrial Function Score 0.38 (normal range 1.00-3.00) comment: very poor
    Cell Free DNA 12.9 (normal range up to 9.5ug/L) comment: some increase in cell degredation
    SODase 38 (normal range >40%) comment: poor
    Glutathione Peroxidase 67 (normal range 67-90 U/hHb) comment: borderline selinium status
    Glutathione 1.48 (normal range 1.7-2.6 mmol/L) comment: very poor


    So from those results I am borderline or poor in pretty much everthing except co-enzyme q10, which i had been supplementing before the tests anyway), and looks like I have some toxicity issues too.

    As regards my main question is to wonder if anyone thinks I have POTS?

    Like i said, my my problems are standing up, and especially standing still for even short periods, and infact showers make this much much worse. So I have cut them out a lot. Secondly I get pretty quick respite from the majority of my symptoms by lying down. I have only had Post exercise malaise just twice since Ive been unwell, but I think this is largely because I cant remain upright for long enough to do activities to tire me out.

    The majority of the day once I get up, I spend slumped on the sofa or in bed. I do have some cognitiive problems, but only minor and I feel id almost be able to return to work if someone could help sort my OI issues out.

    What is so annoying was prior to suddenly becoming ill, I was very fit and active and had even won national titles in athletics a few years ago. In fact the day before I became ill I had run 8 miles, so lack of fitness wasn't an issue to me (although perhaps overtraining could have contributed to all this) Although because of my OI, I've been reduced to probably 1% of what I could do before.


    I was thinking of buying a blood pressure heart rate monitor to perhaps try and do a poor mans tilt test. I also borrowed a friends HR monitor a while ago, and my resting HR before i was ill was around 40-44, occasionally below 40, and now its had quite a jump to around 58-60. I really do feel my fitness has actually counted against me getting some proper help, as I look healthy, my HR seems low even now its jumped up a lot, and in the docs my blood pressure is low normal too at around 115/65. I had an ECG too which came back normal, but I was lying down for that.

    Apologies for a lengthy post but any thoughts?
  2. Sasha

    Sasha Fine, thank you

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    Hi jonnyboy - sounds like POTS to me and I'm sorry your GP is so useless. I did the poor man's tilt test, which was positive, and mailed my GP a couple of papers from the internet about ME/CFS and OI, along with the results of my test. He repeated the test in the surgery, confirmed my results, and got me referred to the local cardio unit who treated me like a muppet and refused the 30 minute test recommended for ME. But it sounds as though they would have liked you much better because yours kicks in faster!

    In your position I'd either ask to be referred to a cardio unit for testing or ask to be referred to one of the two UK centres that does testing for OI with specialist equipment, if you think you could travel there. One of them is Prof Julia Newton's unit in the Newcastle ME/CFS centre and there's another unit in London. I don't have time to provide the links just now but a bit of googling should bring them up. Try looking on the EDMESH site for an account of Prof Newton's recent talk - I discussed it here on PR a while back and the pros and cons of going. There are also syncope units (syncope = fainting) at some hospitals that might also be useful.

    I'm sorry you're having such a bad time with this!
  3. Esther12

    Esther12 Senior Member

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    It could be POTS-ey. POTS can be hard to diagnose, with only a few places doing things like tilt-table tests.

    Dr Myhill's stuff is rather Alternative, so I wouldn't push it with your GP, even if this is a route you want to take. I think that some of her advice can be helpful, but some of her ideas just seem wrong.

    Good luck with everything.
  4. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have had POTS for three years. It is a form of Dysautonomia, the Autonomic Nervous system stops working correctly.

    I have integrative MD's that know how supplements can help so I am doing very well with my CFS/ME and my POTS.

    Yes, do get a blood pressure monitor and also, a heart rate monitor watch. I use both. I wear my heart rate watch all day. The kind with a chest strap always displays your heart rate. It has been a wonderful tool for me. I know when to sit if I still feel OK.

    There are many awful symptoms and problems with POTS, but the hallmark is that that heart rate goes up 30 beats per minute within about 10 minutes of standing.

    The chest hurts and heart pounds, there is often neuropathy, loss of sweating or more sweating, nausea, air hunger, dizzness , high bp and low bo, some people faint a lot, and many other problems.

    The blood is not able to stay in the head and chest because the nerves do not tell the blood vessels and muscles to contract and push the blood up as we stand.

    I was too sick to walk and had dizziness and nausea 24 hours a day. Seeing my integrative MD's has helped me and I am not in bed anymore.

    I hope you can find a doctor over there that will know more and help you.

    Here is a picture of my heart rate monitor and medical alert bracelet.
    [​IMG]
  5. Sasha

    Sasha Fine, thank you

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    Another couple of things!

    Some anti-depressants make OI worse. There's a site called dinet about OI, which lists some here (scroll down to the subheading, "many medications".

    I see from your test that you have low glutathione. Rich van K has developed a "Simplified Methylation Protocol" to tackle this, and has done a preliminary trial with no control group that showed good results. He gave a very good talk which you can see online (see this thread). Freddd has also developed a similar protocol, to deal with his b12 issues (he appears to have many genetic polymorphisms that might give him a lot of problems) which others have also tried, with some success, including improvements in people's OI, I gather.

    The advantage of their protocols is that they use sublingual b12, not injections. Similarly, several of us wanting to increase our magnesium levels (often recommended by Dr Myhill to do via injections) are using transdermal methods such as Magnesium Oil, which you can order online from Holland and Barrett.
  6. richvank

    richvank Senior Member

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    Hi, jonnyboy.

    I agree that a methylation treatment might be very beneficial for you. Also, it may be that you have OH (orthostatic hypotension) rather than POTS (postural orthostatic tachycardia syndrome). In OH, the blood pressure drops after standing for a short time. In POTS, as Sally mentioned, the heart rate rises. Some people have one, some the other, and I think some have both. I think it is clear from what you have reported that you do have an orthostatic problem.

    Best regards,

    Rich
  7. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Rich's information can help for sure. I do that and I also take quite a few other supplements and have blood testing twice a year.

    I take ATP, Liposomal Glutathione, antioxidents (VERY important for the nerves), immune system supplements like Maitake mushroom drops, AHCC etc.

    The main thing that is helping my POTS which for me is Autonomic Neuropathy, is 900 mg of Alpha Lipoic Acid. A good timed released one and Benfotiamine which is a fat and water soluble b1. Both heal the nerves. It is well known to work for neuropathy of all kinds. My doctor guides all supplements and amounts.

    Oh, with POTS, bp can go up or down, but the heart rate is the major difference. Mine went high.
  8. ahimsa

    ahimsa Senior Member

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    Hi jonnyboy, and welcome to the forums!

    Like others have mentioned your symptoms do sound like some kind of Orthostatic Intolerance (OI). There's a good overview document from the Johns Hopkins clinic at this link (PDF file) - http://www.cfids.org/webinar/cfsinfo2010.pdf It lists two kinds of OI, NMH and POTS, but does not go into details about different types of POTS. Also, different doctors use slightly different terms so if you go searching on the internet you'll find some gray area. The CFIDS Association has a brief (1-2 page) overview -- it's probably got information that you've already read but here it is anyway - http://www.cfids.org/about-cfids/orthostatic-intolerance.asp Folks have also posted lots of other helpful links for patient information (e.g., http://www.dinet.org/ )

    If your doctor is at all open minded then you could print out the first 10-11 pages of the Hopkins PDF document and bring it to your next appointment. On the other hand, an incredible number of doctors (even specialists) not only know nothing about OI but seem to be rather closed minded about it. At least, that's my experience in the USA. So, this strategy might not work but I thought I'd suggest it anyway 'cause it's worth a try.

    Does anyone know whether UK doctors have a good or bad impression of Johns Hopkins? I think they have a good reputation in the USA and that may be one reason my primary care physician listened to me back in 1995. I showed her some preliminary results from the early studies on the link between ME/CFS and OI and she referred me to a cardiologist. And then the cardiologist agreed to a tilt table test. At any rate, if someone has a document that would be more impressive to UK doctors then please add it.

    Re: the poor man's tilt table test, it might show something but there are reasons why it might not show anything. It all depends on what type of OI that you have. Rich mentioned OH (Orthostatic Hypotension) which is usually the term used for when there's an immediate drop in blood pressure after standing. In other kinds of OI there is a delay before the BP drops. My primary type of OI seems to be Neurally Mediated Hypotension (NMH). This problem would not have shown up on the home "tilt" tests that I have seen posted. It takes a fairly long time, 20-30 minutes in my case, before my BP drops low enough that I pass out. (passing out is not required for the results to be deemed abnormal but it's what happened in my case) Like you I get symptoms pretty quickly (a minute or two) but the big drop in blood pressure does not happen until later.

    I also wonder whether a home blood pressure monitor would be sensitive enough to pick up a BP if the pulse pressure (difference between systolic and diastolic pressure) goes very low? And last, but not least, if you get close to fainting and fall over you could hurt yourself. At the very least, please have someone with you if you try this type of testing at home.

    I was also fairly active and fit when I first got sick. It took me 5 years, and dozens of doctors, before I figured out (doing my own research) that OI might be one of my problems. I hope you convince your doctor that getting a tilt table test would be a good thing. Good luck!
  9. jonnyboy

    jonnyboy

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    Thanks for all your help guys and gals.

    Ive just ordered at blood pressure hr monitor. One of these http://www.chemistdirect.co.uk/omron-mit-elite-plus-upper-arm-blood-pressure-monitor_1_156242.html
    So hopefully will arrive in a day or two. I will be careful when i carry out the test. I have never passed out yet, probably because the horrible feelings i get upon standing, come on slow enough for me to realise and then sit or lay down to get relief.

    I will report back on here with some results, and if they look positive for anything I will pester my GP to see if I can get referred to one of the top places either in London or Newcastle.
    Incidentally I had my first session ever with a perrin osteopath yesterday. She did warn me beforehand I could feel worse afterwards. And boy was she right. All she did was some light cranial movements, and i felt nothing at the time, and some lymphatic drainage, which was really light massage. Ive been used to lots of sports massage for my muscles in the past as an athlete. So I really wasnt expecting much to happen at all. Initially my neck area felt a rather strange warmth for about 2hrs afterwards, which was a nice feeling. Then by the time I was going to go to bed, I had loads of aches and pains all over my body, and almost all of the worst symptoms I had at the beginning when I first got CFS returned. Nothing I have done since I first got ill, has made me feel as bad as I did last night, so I can only put it down to the treatment I had. It was like I had some sort of detox reaction, but what is really odd is that nothing I have eaten or taken as a supplement has made me feel any better or worse since I first became ill.
    This treatement made me feel so much worse, which is what she said it would. So at the moment although its only 1 treatment I'm optimistic. I would probably have been annoyed if i felt nothing after the treatment to be honest.

    Anyway thought I'd drop this in. I will repost when I've done my poor mans tilt test, with the help of my dad.
  10. Sparrow

    Sparrow Senior Member

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    Good luck with things! And I'm so sorry that like so many of us, your doctor is clueless and unwilling to think outside their box. You sound SO much like where I was earlier this year. I've since decided that unless a doctor is knowledgeable about ME/CFS, it's pretty much a waste of time to see them, no matter how well informed I am, or how much information I bring with me. Sad but true. Good news, is that there is some great information on this forum, so there are a lot of ways to help yourself.

    It definitely sounds like OI to me as well. I recognize what you're describing. ...Although my doctor hasn't officially diagnosed me with any kind of POTS-related problem either. I got the one minute stand and measure as well, which apparently is way too short for most ME/CFS patients (but sufficient for the rest of the world, which is why they think if nothing's happened by then, you're fine). My heart rate did shoot up plenty far to qualify for POTS, but she sort of ignored that. I got my own heart rate monitor too. Didn't help with my doctor much, but it did make me feel better to know what was going on myself, and has helped me in monitoring my own interventions, etc.

    I had the Myhill tests done as well. If you wanted to follow her recommendations, you can do a lot without doctor's support. They make magnesium sprays that work as an alternative, as do Epsom Salts baths (she has a page on her site about alternatives to the injections), and sublingual B12 works pretty well too. So it can be done with all health-store-type stuff.

    In terms of the POTS, I've had some success under the guidance of a naturopath just through lots of water, salt, and licorice, since my blood pressure got so low when I crashed. Didn't notice any difference with the licorice until I got to around 1.5 grams, I think. Some licorice pills will have "do not exceed this dose" warnings, but to my knowledge the only real reason is that it can increase blood pressure as a side effect. ...Which was great for me because mine was so low, and that was part of the whole point in taking it (it also helps adrenals, and mine were not producing enough DHEA for my age, or enough cortisol except first thing in the morning).

    Good luck to you!
  11. richvank

    richvank Senior Member

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    Hi, all.

    I would like to repost my comments about what I think is causing POTs in ME/CFS:

    In my view, there are three things that occur in CFS that are likely contributors to POTS:

    1. The total volume of blood in the body is often lower than normal. This likely results from a "mild" diabetes insipidus (not the same as diabetes mellitus) which is often present in CFS. This in turn is caused by lower than normal secretion of antidiuretic hormone (ADH) by the hypothalamus/pituitary. In my hypothesis, this is caused by glutathione depletion in these organs. The low ADH secretion causes the kidneys to dump too much water from the blood into the urine, and that lowers the total blood volume. People with diabetes insipidus have high 24-hour urine volumes (sometimes much higher than the normal average of 1.5 liters per day), and they have constant thirst. They drink a lot of fluids, but can't keep up with the loss of water into the urine, so they run at lower than normal total blood volume all the time. The osmolality (depends on concentrations of solutes, including the electrolytes) of the blood is higher than normal, and the osmolality (and specific gravity) of the urine is lower than normal.

    The low total blood volume causes the venous return of blood to the heart to be lower than normal, and that lowers the stroke volume, since the heart can pump out only what it receives. The cardiac output (the product of the stroke volume and the heart rate) is particularly lowered when standing, because of the additional effect of gravity. Low cardiac output prompts the autonomic nervous system to speed up the heart rate in an effort to raise the cardiac output and deliver more blood when standing, and that constitutes POTS.

    2. Most people who have CFS have dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis. This causes the cortisol output to be abnormal, usually too high in the early part of the illness, and then dropping down to be too low later in the illness. This interacts with the secretion of adrenaline (epinephrine), and noradrenaline (norepinephrine). Among other things, these hormones control the operation of the heart and the circulatory system. This dysfunction may also contribute to POTS. In my hypothesis, this dysfunction is also due to glutathione depletion in the hypothalamus and pituitary.

    3. Many people with CFS have diastolic dysfunction of the heart. This means that the main pumping chamber of the heart (the left ventricle) does not fill with enough blood during the diastolic phase of the heart's cycle, and that also limits how much blood is pumped out (stroke volume). A low stroke volume again prompts the autonomic nervous system to speed up the heart rate in order to raise the cardiac output. Diastolic dysfunction is caused by too low a rate of supply of ATP to the heart muscle cells by their mitochondria. In my hypothesis, this is caused by glutathione depletion in the heart.

    The bottom line is that glutathione depletion can explain all of these aspects as well as many more aspects of CFS. In recent years, we have found that the glutathione depletion in CFS is linked to a dysfunction in the methylation cycle, and that lifting the partial block in the methylation cycle will restore glutathione and correct many of the aspects of CFS. If you want to read more about this, you can find information at http://aboutmecfs.org.violet.arvixe.com/Trt/TrtGSHIntro.aspx

    A more recent discussion of the GD-MCB hypothesis is presented in this video of an invited seminar I presented in Sweden two weeks ago (It's more than 3 hours long :)-) :

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

    Best regards,

    Rich
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Rich, I agree with all you said. I remember seeing it in your Swedish presentation too. Great information.

    Another huge problem is neuropathy. That affects a lot of people. I am actually healing my nerves with Benfotiamine and long lasting ALA, 900mg and more. Neuropathy in the heart and body affect POTS and cause it many times. I do take the other supps that are needed too. The nerves for me are the key. The nerves tell the heart, blood vessels to contract and keep the blood from pooling.

    I also drink a lot of water for volume, but the nerves have to be addressed with these supplements.
  13. jonnyboy

    jonnyboy

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    Thanks for replying Rich.
    Funnily enough you have almost described what I feel is going on inside my body to a tee!
    Aside from fatigue issues, and generally feeling rotten the entire time. Ever since I've been unwell, I had always described to my doctors an odd feeling, saying I didnt feel there was enough blood in my body, and it wasn't being pumped around properly inside me. Naturally this was completely dismissed by them, but your comments above made perfect sense too me. Not only that but I my skin has become very very dry since I've been unwell, and its especially more noticeable around my hands and feet. Adding moisturiser to these areas makes no difference and its thou I'm dried up on the inside. Which to me is another indicator that I'm lacking in blood/water. Thou oddly enough I'm not thirsty with this, drinking more fluids only makes me urinate more, so I cant hold on to the fluids I'm drinking anyway.

    I had a brief look at your papers and saw my glutathione levels seemed very low even compared to patients used in your trials, just wondering if its maybe a difference in the way some labs measure it. Do you think stress, and too much of it can contribute to depleted glutathione levels?

    I wouldn't have said I was particularly stressed before I became ill, but in hindsight, my gut feeling was my body had just simply had enough, and decided to give up on me. Prior to becoming ill, I was working a full time job, and in addition to this was running a number of other projects, and a local shop in town which I joint owned. So I was probably working 80-90hrs a week, mostly doing things that were very demanding mentally and concentration wise. In addition to this I had been still training almost as a full time athlete. Meaning I was doing at least 6 very intense training sessions a week. I thought I was coping fine with all this at the time, and had been doing this schedule for about 2 years, I wasn't unduly stressed, but in hindsight looking back on what I was doing, I think it was no wonder by body caved in.

    Incidentally I had some blood tests back yesterday which showed that I had too high levels of intracellular calcium. Which may explain why my magnesium in my cells is low, though I'm just guessing to be honest. From the comment on the test, I'm assuming high intracellular calcium is a bad thing.

    My blood pressure and heart rate monitor turned up today, so I will post the results up as soon as I summon the guts up to test myself.
  14. jonnyboy

    jonnyboy

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    Sally what is neuropathy? is that nevre pain?

    One of the things about my illness is that pain hasn't really been a big part of it. Thou that has probably been a kiss of death. I only had muscle pain initially and the very odd bouts of nerve type pain, I got ill in late February, but my pains had mostly disappeared by mid may. The only time my pains have returned in the last 5 months, was a couple of days ago after having my first treatment with a Perrin Osteopath practitioner. I can only put this down to toxins being released into my system, as it certainly wasn't due to activity or anything else I did that day.
  15. jonnyboy

    jonnyboy

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  16. richvank

    richvank Senior Member

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    ***Hi, jonnyboy.

    Thanks for replying Rich.

    ***You're welcome.

    Funnily enough you have almost described what I feel is going on inside my body to a tee!

    ***Well then, I would say that you have great intuition! :D:D

    Aside from fatigue issues, and generally feeling rotten the entire time. Ever since I've been unwell, I had always described to my doctors an odd feeling, saying I didnt feel there was enough blood in my body, and it wasn't being pumped around properly inside me. Naturally this was completely dismissed by them, but your comments above made perfect sense too me. Not only that but I my skin has become very very dry since I've been unwell, and its especially more noticeable around my hands and feet. Adding moisturiser to these areas makes no difference and its thou I'm dried up on the inside. Which to me is another indicator that I'm lacking in blood/water.

    ***I would say that these symptoms jibe very well with what I've suggested is going on. There actually is published research that backs this up.

    Thou oddly enough I'm not thirsty with this, drinking more fluids only makes me urinate more, so I cant hold on to the fluids I'm drinking anyway

    ***Not being able to hold the fluids is a characteristic of diabetes insipidus. Most people are thirsty with this condition, but some are not, as you've reported. The thirst sensor in the hypothalamus is a separate item from the part that controls secretion of antidiuretic hormone.

    I had a brief look at your papers and saw my glutathione levels seemed very low even compared to patients used in your trials, just wondering if its maybe a difference in the way some labs measure it.

    ***You may have a measurement of total glutathione in the red blood cells. That is different from the measurement of reduced glutathione in the blood plasma, which is done on the methylation pathways panel. The latter is a more sensitive measurement.

    Do you think stress, and too much of it can contribute to depleted glutathione levels?

    ***Most definitely I do. That is the first step in the pathogenesis hypothesis for ME/CFS that I have proposed, and I think there is a lot of support for it in the pre-onset experiences people report, combined with the known biochemistry and physiology of the body's notspecific stress response system.

    I wouldn't have said I was particularly stressed before I became ill, but in hindsight, my gut feeling was my body had just simply had enough, and decided to give up on me. Prior to becoming ill, I was working a full time job, and in addition to this was running a number of other projects, and a local shop in town which I joint owned. So I was probably working 80-90hrs a week, mostly doing things that were very demanding mentally and concentration wise. In addition to this I had been still training almost as a full time athlete. Meaning I was doing at least 6 very intense training sessions a week. I thought I was coping fine with all this at the time, and had been doing this schedule for about 2 years, I wasn't unduly stressed, but in hindsight looking back on what I was doing, I think it was no wonder by body caved in.

    ***I would say that you are a "poster person" for my hypothesis! :D:D Check out the early part of the video:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

    Incidentally I had some blood tests back yesterday which showed that I had too high levels of intracellular calcium. Which may explain why my magnesium in my cells is low, though I'm just guessing to be honest. From the comment on the test, I'm assuming high intracellular calcium is a bad thing.

    ***Yes, it is a "bad thing." In ME/CFS, intracellular magnesium is too low, and intracellular calcium goes too high. I believe this stems from glutathione depletion, which causes dysfunction of the mitochondria, lowering the ATP production. This produces an energy crisis for the membrane ion pumps, and that's what causes the abnormal levels of magnesium and calcium.

    My blood pressure and heart rate monitor turned up today, so I will post the results up as soon as I summon the guts up to test myself.

    ***O.K. That should be very helpful, and I will be surprised, in view of what you reported, if your HR and BP behave normally when you stand up.

    ***Best regards,

    ***Rich
  17. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    No, it doesn't mean pain. Although pain and tingling, etc can happen later. The nerves control the vessels and do not work correctly. So you get pooling. Also, the heart is affected. This is my POTS. Autonomic Neuropathy. Below is the definition by Mayo.


    *Autonomic neuropathy is a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion.

    It isn't a specific disease, instead autonomic neuropathy refers to damage to the autonomic nerves. This damage disrupts signals between the brain and portions of the autonomic nervous system, such as the heart, blood vessels and sweat glands, resulting in decreased or abnormal performance of one or more involuntary body functions.

    Autonomic neuropathy can be a complication of a number of diseases and conditions. And some medications can cause autonomic neuropathy as a side effect. Signs, symptoms and treatment of autonomic neuropathy vary depending on the cause, and on which nerves are affected.





    I just wanted to let you know since I have heard from many POTS patients that this is part of the problem. It is often the cause.
  18. RUkiddingME

    RUkiddingME Senior Member

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    Canada
    Hello everyone; I'm a newbie 42 year old Canadian female who'se life changed two years ago after beeing in the best shape of my life. After seeing every doctor and having every test come out normal (except for Vit D deficienty) I was diagnosed with Chronic Fatigue Syndrome. When you say those three words to people in Canada they look at you like you have three heads! I've had to go to a fatigue clinic in the US for treatment since I'm in the middle of my two year wait here to see a doctor who is familiar with it. Although I have a lot of the symptoms of CFS I am not convinced that it is the major culprit

    From the very beginning on the bad days I would drag my feet. My legs felt like they weighed 200 pounds each ( I weighed 125 lbs) at the time. Couldn't stand standing up. I was able to work for part time for 10 months, spending evenings and weekends in bed. A few months later I felt better and I decided to be active again only to get me in the emergency room since I could barely move except for my head. At the time I didn't know what I had and didn't realize that I wasn't alloud to live.

    From then on, no work, no activity, no walking, no driving, no life and hello wheelchair. Now for the past three months beeing completely bed ridden. Shortly after beeing bed ridden I asked my husband to get me a heart rate monitor to see if I could stay within my anaerobic heart rate of 106. I got the same watch as sallysbloom pictured above( its a NewBalance N4 and its awesome). Anyway my heart would go from 70 sitting to at least 110 standing and 120-130 brushing teeth standing.

    To make a long story short, I have been going to this fatigue clinic in the US where their main treatment is IV's. Those IV's bring me back to life temporarily. After I get back home it's back to square one. So I figured it probably wasn't necesarilly what was in the IV (supplements) but the sodium and liquid which expanded my blood volume. I finally got my doctor to send me to a cardiology clinic where they immediately diagnosed me with postural hopotension. My heart rate on the EKG went from 89 laying to 136 standing but there was no mention of POTS. I have to wait 2-3 years to get a tilt table test and my doctor won't prescribe fludrocortisone (Florinef) for me since it has to be monitored very closely by a doctor who specializes in this stuff. I read that beeing bed ridden can also cause symptoms of POTS but I am confident that it has been a problem from the beginning and was just not aware of what my heart was doing. I would just start feeling shaky when brushing my teeth to long or standing for more than a few minutes. I have lost all my muscle mass and have a big gut which is bigger than I ever had. I have all the puzzle pieces now the problem is that I live in Canada and the wait times are brutal and our insurance won't cover anything done in the States and have spent all our money on the fatigue clinic and POTS may be the problem I had all along????

    It sure is nice to have a place to tell your story!! Thanks Phoenix Rising!! Good luck to everyone and would love to hear similar stories cfs vs POTS or both. I don't have pain, I don't have the sore throat, lymph nodes are fine, no brain fog. Extreme fatigue, weakness, heavy legs, bloating, weight loss (muscle wasting).
  19. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Southern USA
    I was wondering where you lived since you have to wait so long. that is amazing, years for a tilt test? It normally takes no time to get a tilt test etc. Days... I am so sorry you have to wait so long! I was too ill for the tilt testing, so my doctor who is an integrative doctor, did other tests the day I saw her.
  20. jonnyboy

    jonnyboy

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    Kent, UK
    Hi guys, still haven't summoned up the courage to do the poor mans tilt table test yet.

    But may not have to now.

    I had some autonomic function testing done yesterday. So was wired up to computers for about 2hrs taking readings on heart rate, blood pressure and a few other things in various positions, like lying, sitting, sitting bolt upright, standing and sitting on a low stool.

    Although I couldn't see what the readings where most of the time, I could see them for a period when I was sitting down on a low stool. My HR was roughly between 65-70 and that was for around 15 minutes.
    What was interesting was when I was standing up, my HR was constantly yo-yoing. I was only stood up for 3 minutes. But my HR went up to 102 immediately, then dropped back to around 85, then back up over 100 again, then dropped back down to 85ish again. It seemed to repeat this cycle maybe every 30 seconds. So from that I have no idea if I have POTS or not, but i strongly suspect my heart is fatiguing quickly and cannot maintain the high heart rate, so it jumps up to 100, then tires, goes down to 85, then gets a bit of energy back and gets back to 100, then tires again.

    Whilst none of those figures appear to be out of the ordinary. Pre illness which was only back in February this year, my resting heart rate was 40ish sometimes as low as 36, my heart rate when just walking around the house was around 55-60, and 100 was the sort of rate it would get to if i was doing a warm up jog before training started. So my HR seems to have increased by around 50% in most cases. I wont have the proper results back from the test for about 3 weeks.

    Incidentally I also got some more test results back, and it looks like one of the main reasons I'm fatigued is toxic blockages on my mitochondria. Those seem to be quite significant amounts and was caused by benzoates and benzoquinones. I had a google of what they are, and are contained in petrol fumes, food preservatives and phamaceuticals. I didn't think I was particularly exposed to petrol fumes too much, and I tend to eat fresh foods so didnt think it was likely to come from that. What was interesting was sodium benzoate, and other benzene derivatives were contained in practically every cosmetic i use on a daily basis. From my mouth wash, moisturiser, hair gel, shampoo, shower gel and conditioner and even hand soaps around the house. So the whole time I've been ill I've been perpetually exposing myself to this substance unknowingly. I had a DNA adducts test done too, and although I didn't really understand the meaning of that test too well, it showed benzoates where stuck all over my dna and 1 gene as well. So first thing I think is to avoid all these substances altogether, then work on trying to get rid of what is inside my body.

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