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Huge improvement in two hours

Discussion in 'General ME/CFS Discussion' started by knackers323, Dec 24, 2013.

  1. Elph68

    Elph68 Senior Member

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    Hi Hip,

    IBD (Crohns & Ulcerative Colitis) is classed as an auto-immune disease ..... Same/similar symptoms as CFS .... Patients with IBD still have IBS, And how does anyone know for sure that IBS is not in fact a very mild form of IBD??

    The papers say that the same bacteria are implicated in IBS and IBD ....

    I believe there is not a single cause for this disease ... I believe Brain Fog etc = TOO MUCH SUGARS (Acidosis) Auto-immunity = bugs (bacteria/viruses) in lymphatic system .....

    over 50% however, are viridans streptococcus/enterococcus based
  2. Indigophoton

    Indigophoton

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    Just wanted to add my experience, in case it helps anyone.

    I have very severe ME, mostly bedbound, and have been ill for over two decades, so I wasn't expecting miracles, but after looking into it after reading knackers323's post, it seemed worth a try.

    I started on 1/2 teaspoon of the powder form (1.25g of L. rhamnosus lysate). Within about half an hour to an hour I suddenly felt really nauseous, which lasted a short while, and then had slight flu symptoms for about a day or so (but I often did have those). Then nothing much seemed to be happening, so after about a week I upped to 2 x 1/2 teaspoon a day, got very brief nausea with the increase, and carried on with the rest of the pot.

    I noticed that I was getting far less fever, and wondered if it was the L. r. lysate, but wasn't sure. Before taking the powder, for years I could expect to be feverish most days, and on very little exertion.

    When the pot ran out, I figured it didn't matter if I didn't take it - it's expensive after all! Within a few days the fevers were back. I bought another pot, had very brief nausea on re-starting it, mild flue-ey symptoms, then nothing except the fevers drastically reduced again.

    Finished the pot, still wasn't convinced it was the l.r.lysate ( :confused: !) so didn't order more. A few days later, the fevers were back.

    I ordered some more after enduring a couple of weeks of the old days of fever, at which point the correlation of taking the powder and the reduction in fever was not looking at all like a coincidence. I got the mildest of immune effects on restarting, and the fevers dropped away again. At that point I decided it is definitely the lysate reducing the fever.

    I don't think it's placebo because
    a) although I was willing to try it, I was sceptical of actually getting any result,
    b) when I ran out, I forgot I wasn't taking it (so didn't imagine the fevers back into existence),
    c) I was never convinced it was the l.r.lysate that was making the difference anyway, hence I kept stopping taking it thinking it'd make no difference.

    I have gone from fever most days to between two and a few days a month, and then only because of (what is for me) massive (unavoidable) exertion of some duration. Mild/moderate exertion and very short massive exertion no longer provoke fever, and the endless background fever is seemingly consistently gone.

    So my experience is that the L. rhamnosus lysate definitely seems to have shifted something in my immune system.

    I plan to keep taking it now: to not be suffering endless fever is a significant improvement, at least in how I feel, and day to day quality of life :thumbsup:; I don't know whether it may mean anything more in terms of helping to heal, or whether it will only ever be a purely symptom improvement, but I'm gladly taking the latter!

    Just wanted to say thanks @knackers323 for bringing it to my attention!


    Later edited for accuracy to add: I actually ran out three times and thought stopping wouldn't make any difference, only to find the fevers came back within a few days each time; it was after the third round of this that I concluded the l.r.l was really making a difference. Think I missed out one of the times in describing things above (brain still malfunctioning nicely then ;)).
    Last edited: Jun 5, 2014
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  3. Allyson

    Allyson *****

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    never heard of it - following - please keep us posted

    thanks

    ALly
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Sorry if I missed this, but do you take your temperature when you suspect fever? The reason I ask is that we often feel as though we have a fever but our body temperature is actually unusually low, even when we are feeling like a volcano erupting! There is a thread on body temperature here.
  5. xchocoholic

    xchocoholic Senior Member

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    Not that I can follow this totally but the NIH stated as far back as 2006 that celiac disease is commonly misdiagnosed as cfs. It's on the NIH website for celiac. I found it in 2006.

    Considering they're also saying that 97% of celiacs are undiagnosed and they say it can take up to 11 years for a celiac to be diagnosed AFTER they begin having symptoms that leaves a lot of room for errors.

    Personally most of the celiacs I know had multiple negative biopsies before being properly diagnosed. And most have more than just digestive symptoms from gluten.

    Wanted to add to that Dr Fasano and others have written numerous papers on leaky gut / intestinal permeability. You'll find their names in the gluten summit info tho. Or theglutenfile. Basically this is old news to those following this info.

    Tc .. x
  6. Indigophoton

    Indigophoton

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    Yes, I know what you mean, I had a low core body temp for many years, so even when I was soaked in sweat the thermometer would read lower than normal.

    However, about eight to nine months ago, well before trying the l.r. lysate, I started a few supplements to raise my levels of dopamine, GABA, serotonin, acetylcholine,and endorphins. Amongst a number of unexpected, positive, side-effects, or consequences of successfully doing that, was a stable increase in my core body temp of about a degree or so.

    I'm still taking these supps as they are proving so useful.

    Unfortunately, in this context, I don't know what temps I was getting with fever in the time of taking the neurotransmitter supps but before beginning the l.r.lysate. (I have very limited capacity for activity, so often essentials get cut to the bone in the toughest moments, never mind optional things like temp taking! :rolleyes:)

    Since starting the l.r.lystate, when I get a fever my temp is usually over 100F/over 38C.

    The other difference that you reminded me of is that in the first years of being ill, when I got a fever it would be alternating chills and sweats. In the last decade or so it had become only sweats/heat. But with the l.r.lysate the fevers are back to being interspersed sweating and chills (which is what prompted me to measure my temps again).
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I get mostly hot flushes (sometimes extreme) but occasionally feel very cold. They don't correlate with changes in body temperature. I've only checked this a few times for myself, but it seems common with other ME/CFS people too.

    Wow - that is some fever you get!
  8. Leopardtail

    Leopardtail Senior Member

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    That alternating sweats and chills does sound like a proper fever - the body changes its threshold for how hot you feel when fever is needed. When you feel cold in between that likely means you still need to fever but your body is unable to sustain it. It also sounds like a fairly strong recovery. I would suggest you remember the old adage of 'feed the fever'.

    Up your ATP related supplements if you can and give your body the carbs needed to sustain the fever - the high energy demand needs an energy source that will rapidly convert to glucose (but ideally not sugar or glucose). Also wrapping up warm (daft as it sounds) but keeping your head cold for comfort may help reduce energy demand - good luck?
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The old adage is in fact 'feed a cold, starve a fever' (see this article for example).

    However, it has also been said that the adage was misinterpreted and actually means that if you have an appetite it is a cold, and if not, you have a fever.

    Your other comments are related to normal responses and treatments for otherwise-healthy people and may not apply to people with ME/CFS.

    It is important to remember that symptoms suggestive of colds, flu and some other infections are in fact caused by our immune systems, not a direct result of the infections. In ME the immune system is abnormal, and the symptoms may be nothing to do with infection. They can be caused by over-exertion and be part of PEM.

    I have been getting these extreme perceived temperature swings for many many years, so it would be unwise to assume that they indicate recovery.

    I also consider it to be dangerous advice to suggest to someone with ME that they increase carbohydrate intake. Many of us have abnormal digestion that is unable to deal with carbs properly, and improve dramatically when we reduce them.

    Please note that giving medical advice contravenes PR rules. I may sometimes be guilty of this (I try not to) so please, anyone, tell me off if I do.
  10. Leopardtail

    Leopardtail Senior Member

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    We were thinking of different adages - I was thinking of was "Feed the fever, starve the flu" - I have diabetes as you know and if I fever I need to eat more to avoid rapid and severe hypoglycaemia, whereas pre-fever I need more insulin to control blood sugar.
    I am aware that various immune symptoms come from the system not working as opposed to working, however fever is rare in ME patients and if other parts of the immune system are not working is that body's last ditch attempt to sweat bugs out. Fever is not dangerous, but doctors take it seriously for the reason that it indicates the body's basic immune systems have failed. A fever is one of the most energy demanding processes the body undertakes hence 'feed the fever'. It's achieved by backward pumping of protons in ATP synthase creating friction (during which process ATP is generated and Glucose is consumed). Trying to stay carb free during a fever puts high demand on Gluconeogenesis and thus strain on your adrenals, pancreas and liver. Most people with ME work out pretty fast which group they fall into.

    I am aware that you and others do not get on well with carbohydrates, but we are not evolved to be totally without them. The Ribose that makes up ATP is derived from Glucose via the Pentose Phosphate pathway, hence carb free diet it far from healthy unless one has a specific problem with it. Quite a few people with ME also suffer Urea cycle disorders and have to be careful with proteins too, detoxing Ammonia needs a lot of ATP. However, I am aware that some have SOD issues of a genetic nature and need to be more careful with carbs.

    With respect to the BBC article you reference, the title is misleading, it's dominantly talking about bacterial vs viral infection. The fever response is more likely to be needed for intra-cellular pathogens (more so with ME immune dysfunction). Our body utilises it because our cells can remain living at higher temperatures that can viruses.

    My view is that if a person with ME has recovered enough to fever, they are far more likely to be capable of tolerating carbs and indeed need them. This was in any case action for the specific circumstance if a fever is supported it should not long, dragging it on for days creates significant risk of generating PEM in a similar manner to the Herxheimer reaction.

    Research has shown that 80% of ME patients benefit from Ribose, that does suggest carb intolerance is the minority case, even though it does occur. Advice my Grandmother knew to give hardly constitutes 'medical advice'. Normal medical advice on diet including that of Sue Pemberton clinical lead of one of Britain's the most successful ME clinics is to eat a 'balanced diet' including carbs. More to the point during a fever the body produces Glucagon and/or Catechols & Cortisol to get glucose into the blood, it's an inherent part of the fever response, depriving yourself of carbs in this circumstance will not change that. If you are trying to point out that people should not eat masses of naughty sugary food though, that I would wholeheartedly agree with. I would also agree that getting all our energy from carbs is not a good idea and that respecting the individual quirks of your own body is essential but total withholding of a food group seems unwise in absence of allergy..

    I would be more inclined to regard complete carb abstinence as 'dangerous advice' for all who lack a specific problem with them. Taking some carbs is regarded as part of a balanced diet by the vast majority of health professionals.
    Last edited: Jun 7, 2014
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Quote from one of my posts on another thread:

    Does your advice come from Jacob Teitelbaum, who sells d-ribose?

    I asked about body temperature because many people with ME think that they have a fever because they feel abnormally hot, but this is a common misperception as can be ascertained by taking the body temperature.

    As far as I know fever is usually created to fight pathogens, because the pathogens are less able to cope with high temperatures.

    Many scientists do not believe that most/all people with ME have infectious causes or chronic infection, and many of us seem to completely stop getting colds and flu after developing ME. (There are threads on this.) This is likely to be due to our immune systems being constantly hyper-alert and attacking things that they shouldn't plus things that they should - nothing seems to get past our immune systems.

    I've never heard of "Feed the fever, starve the flu".

    IIRC I do not agree with 'Sue Pemberton clinical lead of one of Britain's the most successful ME clinics'. (And what is one of those? I didn't realise there were any.) I think she just spouts standard government advice, which a substantial number of scientists consider to be wrong, as do I.
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  12. Leopardtail

    Leopardtail Senior Member

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    A study at Leeds Teaching hospital replicated the results shown by titelbaum so he's not alone. My hands on experience with local ME sufferers replicates that. KDM has also produced beneficial results in a study including Ribose & other supplements for intestinal parasites. The diet your recommend relying far too heavily on meat protein and fat would be hazardous to health for anybody with a urea cycle issues. Low ATP alone can create such issues problems without any genetic failure.
    Sue actually refuses to use NICE prescribed methods point blank. She is extremely scathing about CBT & GET with the 'hard model'. Stop attacking the reputation of people you don't agree with unless you have hard evidence please - it's objectionable.
    Further what works for you works for you that's great, that does not make you every ME sufferer.

    With respect to the headache reaction some see a short while after taking Ribose, that occurs the first two of three times if one fails to take it with carbs, or manage blood sugar to avoid issue. It is caused by sudden massive improvement in Insulin performance. One can kill oneself with paracetamol if ones uses it wrong. :)
    Last edited: Jun 7, 2014
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    When did I recommend a diet containing meat? I am a vegan!

    I have a blogpost on leaky gut and ME here, which has many references in it as well as links to PR threads. It too is not simply based on personal opinion and experience, and in it I admit that it may not be completely correct, and I invite comments/corrections.

    I have not attacked anyone.

    I did not get a headache after trying d-ribose. It was instead a feeling of war going on inside me, feeling hot and cold at the same time, horribly 'wired'. My brain felt extremely weird, and it was quite frightening.

    A friend with ME said that he felt close to disembowelling himself with a kitchen knife when he tried d-ribose.

    I was citing a very good, referenced book about ME, not simply reporting personal experience.

    I still want to know about the 'most successful ME clinics' as I am sure would many other sufferers in the UK.
    Last edited: Jun 8, 2014
  14. Leopardtail

    Leopardtail Senior Member

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    Sue founded the Leeds area CFS/ME clinic (NHS) along with Dr Wood (an immunologist specialsing in ME). They produced improvements significantly exceeding norms. They use diet, APT and various other techniques. Unfortunately not long after PACE they were given the choice of CBT/GET only or leave, unsurprisingly they set up a private clinic and continued to 'do it their way'.

    Since Pemberton/Wood left that original NHS clinic (and associated hospital ward) has a foul reputation now for un-diagnosing people they cannot treat with CBT and leaving patients significantly more disabled. For which reason I would recommend people stay well away unless they view their problems as a purely psychological illness.

    They have now set up the yorkshire fatigue clinic - I here very positive reviews from patients at the local ME support group (Leeds ME Network). They don't use any form of drugs / hormones in order to allow NHS GPs to refer to them (though I understand they do sometimes make treatment recommendations to GPs). The service operates using a mixture of one-to-one sessions, group sessions, and home visits depending upon clinical need. For purely immunological issues with ME its still possible to see Dr Wood via the NHS but only if one lives in Leeds.

    Hope that's of use to some of you.
  15. Leopardtail

    Leopardtail Senior Member

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    MeSci,

    I read it some time ago but will take another look at it when less fatigued. I noticed you still suffer polyuria and am assuming (given your qualification) you have checked the routine items (Aldosterone, AVP, Testosterone, Thyroid). - I wondered has Cystine (not Cysteine) been checked out? At high levels it can cause severe polyuria, mess up ATP production and generally cause havoc.

    Leo
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I have only had standard tests and avoid doctors as much as possible now. I have stopped looking at individual biochemical compounds, as biochemistry is much too complex a web for anyone to understand properly what will happen when just one or two compounds are subjected to interventions, as in modern medicine.

    An additional complication is that individual biochemistry fluctuates significantly, so that the spot-checks carried out by doctors and most researchers can be very misleading.

    I have come to the view that a natural, holistic approach is more likely to pay dividends. I have been pleased to observed that more and more scientists are coming round to this view, such as in the case of dementia. I focused on this for one of my Masters projects, questioning whether categorising Alzheimer's and vascular dementia was a false dichotomy arising from excessive reductionism, since when I have seen more scientific papers supporting this, and repeated failures of medications based on reductionism, viz. trying to eliminate beta-amyloid from the brain (which worked in mice, of course!). Looking after the cardiovascular system seems to be the best way to prevent dementia, so that just involves eating sensibly, etc.

    I believe that the same applies with most illnesses, and in some cases it can reverse them partially or completely, and without the adverse short- or long-term effects of drugs. It does require more time, commitment and patience than popping pills, of course!

    Rambling a bit here.:D
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  17. Indigophoton

    Indigophoton

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    Thanks for your suggestions, Leopardtail, I appreciate it.

    In the early days of sweats and chills I used to wrap up head to foot in a duvet, woolly hat, 85F in the room, and it really helped: at some point the fever would suddenly break, as if a switch had been thrown. I would then fall asleep and wake up feeling much better. So that may be worth a try again, although I don't do as well with heat these days.

    I already take rather large doses of D-ribose - currently about 50g a day, down from a peak of 100g a day(!) - so probably fairly maxed out there already. I find it very helpful. My mitos are flat on their faces.

    Interesting, because I have been on what would be considered a fairly low carb diet by normal standards, and found it very helpful, for a long time. I did have wholegrain rice, wholegrain pasta, oats etc.

    Very recently I actually found I really needed more carbs (healthy, wholegrain ones) and was able to eat a small piece of bread for the first time in many years and felt benefited by it (it was 1/3 olives though, and drowning in butter, with a bit of sourdough holding it all together. If you're going to break a fast, might as well do it in style :p) I've also been able to eat half a dozen berries a day for the last three or so weeks after a decade of no fruit at all :balloons:

    I think the metabolic shift is down to essential amino acids getting my protein levels up (I couldn't eat enough food protein to do that), and to some intensive gut supps over the last year improving my ability to handle fast-burn carbs.

    So something is going on, and maybe all this is coming together to allow proper fever.

    I'm not sure it seems anything like a recovery, as I'm still flat out, but fingers crossed it all adds up to a turn in the right direction for a change.

    I agree with @MeSci that the fever is probably some ME immune/auto-immune craziness. Highly unlikely I've picked up new bugs, due to my degree of illness-enforced isolation. I did have a viral onset (glandular fever/EBV), and kept getting knocked down further by viral incidents, so it may be old bugs re-activating, but my experience is, no matter how effective the fever, it never really ends: there's always another down the road.

    It's very interesting to read what you both have written, much to think about, thanks.
    MeSci likes this.
  18. Leopardtail

    Leopardtail Senior Member

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    Smiles, known to ramble on that issue too :)

    I agree that minor alterations are likely to be something and nothing. Very high cystine (as in outside reference range) though does cause havoc. I (to some extent) got around the individual variations by having a full panel of Amino Acids done. At the end of the day you have to look at the test results in detail and ask "does the result match the symptoms" don't you?

    I agree completely that getting to the true root of the problem is the one and only way to go, rather than trying to fix the 'headline' that may well be only a side effect of the true problem.

    I had polyuria with bells on but normal Aldosterone and AVP hence the GP had given up on me.
    I also had hypothryoid symptoms despite normal tests all without explanation.

    Once I tested I found abysmal Selenium was buggering up Glutathione and T4-T3 conversion.
    I also had the high Cystine that was causing the low levels of Selenium.

    It was the big picture of everything fitting together that allowed me to make the jump forward. There were other things too, but those results 'meshed' to give a coherent picture.
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I have searched a science journal database for anything with 'cystine' and 'polyuria' in the title and/or abstract and can only find two papers - one about rats and a very old paper about a genetic condition in children. Do you have any references or links for this?
  20. Leopardtail

    Leopardtail Senior Member

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    Strange, I found a fair bit of stuff.

    Cystinosis is the easiest way to find high blood cystine. More severe forms can cause kidney damage and that gets most of the press. True Cystinosis and excessive urination seem to be fairly well established stuff, the Boots website references it.

    It did take me a while to plough through stuff - when I tried Cystine loads of Cysteine stuff came up.
    Try looking for Cystinosis and Selenium. The urination causes the Selenium deficiency hence that's more likely to cause 'a hit'.

    Hope that helps. :)

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