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The Optimum Health Clinic, London

Discussion in 'Alternative Therapies' started by fred, May 1, 2010.

  1. cigana

    cigana Senior Member

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    No I agree CFS?ME is more complicated, my only point was to highlight how diet could cure something serious to help covince a previous poster of the power of diet who had dismissed it as "blueberries".

    I did not know that, thanks for the info, I intend to do more research when I've got time.
     
  2. cigana

    cigana Senior Member

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    Do you mean that you think there is one "true" CFS and many "false" CFS illnesses?

    Have you been tested for for XMRV ? Do you now suffer from many viruses?
     
  3. serenity

    serenity Senior Member

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    we have one here, in my town. it's been suggested to me that i go. one of my very best friends (before i got ill) worked there for many years. she sees it as silly, nothing but enemas.
    just lettin you know my insider information, an employee said it was a load of crap.
    i understand it may help some, it's not for me.
     
  4. taniaaust1

    taniaaust1 Senior Member

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    okay.. im interested in what you were doing wrong which you realised you were doing wrong and changed?

    I fully agree that diet IS important when it comes to CFS/ME, i had to work out what food intollerances i had and cut out certain foods which were making my symptoms worst. One can also be deficient in something things and not having them show up on blood tests as the deficiency can be in the tissues eg studies have show that that can happen with B12 and B12 deficiency can cause many symptoms.

    When i say that diets dont work for many of us, I was refering to supplementation of things too. eg im on magnesium, Glucosamine calicum, fish oils, D3, a special form of B6 and also twice weekly B12 injections, high amounts of vitamin C, TMG, folate, probotics, i also take a multi B complex and also a good quality womens vitamin supplement. I've tried strict low cholestrol diet (which actually didnt even help my high cholestrol level), ive tried cutting out carbs.. i avoid additives and artifical stuff..... i do best on a diet avoiding my intollerances and which is low carb and high protein. But i still cant work. What else do you suggest for me to do diet wise? I also was on denatured whey for a while (which helped but then i developed an intollerance to it and became completely bowel incontient). .. ?????? When i say that most of us have tried everything diet wise.... i mean most have done similar to what ive done and are doing.. What else do you suggest diet wise??? (I was spending more then what i pay on rent for my weekly supplements!! cause i was taking so many but with no avail).

    Ive also taken many herbs for immune booster.. echinacea, high amounts of garlic, olive leaf extract etc .. also have tried herbal things to help my adrenals but my cortisol level remains low so i then tried prescription cortisol but that didnt work either. Ive also taken various antibiotics (getting rid of my staph and strep infections i had with this illness) and also tried antifungal (olive leaf extract is a good antifungal).. i also took antifungal med.. nystatin.

    Im truely open to any suggestions in regard to my diet. So please advise further if you truely think you can help.

    The CFS in the past few years (after having it for 10 years) screwed up my hormones so bad that i get SEVERE PMDD now with my moods just before periods (and to a lesser degree at other times). Due to trying to get the moods in control (its like i have no control over there as something in my body shifts)... Ive seen SIX psychologists in regard to the CFS issues... and over two psychriastrists (that's not counting all the ones ive seen while in hospital) in the past two years. The only reason why i havent given up.. as my issues are now so severe so im still seeing a psychologist... its like something must be attacking my brain or something (either hormone issue or XMRV is in my brain attacking it). These hormonal mood swings have got me jailed and in trouble with the law, that is how severe my brain has been affected in the last couple of years of CFS/ME. (the moods happened after a severe neurological hit on my body which made doctors think i had parkinsons disease or epilespy as i was having like seizures).

    When i said to you that most of us have tried everything.. i meant everything we can think of. I havent given up on trying things as i know there is more out there, new scientific findings are always coming out. I think most of us keep and keep trying things. It's not like we give up trying to help ourselves.

    Do you have any idea how much that has costed me?? (i spend more then my rent on supplements!!) and no one has been able to help me any. (I see my gyno again on Tuesday so hoping he can advise.. the gyno usually treats the kind of hormone issue i have with testerone.. but unfortuantly i cant take it as i have PCOS.. so right now actually also have a beard. She has actually said i may be better off just having surgery and having a hysterectumy.. due to how much my hormones are all screwed up. (but i hope for the day when i can be well.. and get married and have more children). The CFS has screwed all my body up so badly.

    My shoulder tendon tore (over 6mths ago) and wont heal seems constant inflammation there.. so may need surgery there too. This is just some of the things CFS/ME does to my body.

    Do you still think nutrition can help me?? if so please suggest something i havent tried there.
     
  5. taniaaust1

    taniaaust1 Senior Member

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    no.. as i said i NEVER got sick as a child till i got mono as a teen, i had an abnormality of that i NEVER caught viruses etc like most children do... (oh sorry except i got measles when a toddler, before i went to school). Other than getting the mono, I test postive to past exposure to CMV (never knew i had it thou as it didnt make me sick).. and also for toxoplasmosis in the past (never knew i had that either as i never got sick when i got it). Nowdays thou i get about as sick as anyone does with viruses... (i get actually less viruses than my friends). Thou interestingly i have low white blood cell count which indicates some kind of low grade infection in my body.

    Unfortuantly testing for XMRV isnt in my country yet so im having to wait for it to come here so i can be tested.. My CFS/ME specialist believes I probably do have it (based on how my illness has been.. im of the same subgroup who original XMRV postive test result was done on, the original study was done on those with canadian consensus definition CFS... and also due to having the other things this virus has been linked to running in my family). I know XMRV is in my country thou as so far 3 people from Australia have gone over to America to be tested and all were postiive.

    true CFS??? CFS is a made up illness in which all kinds of things have been thrown including real ME (the original ME), did you realise there are about 11 DIFFERENT definations of CFS... so many dont in fact actually have the same illness and as i said.. many are misdiagnosed due to doctors missing really what they do have.

    ME thou in fact isnt even CFS and is a different illness. ME was about way before they created a CFS and give it a completely different definition. If you dont believe me they arent even the same illness i suggest to look at the info on the CDC site http://www.cdc.gov/cfs/education/wb3151/chapter1-1.html last paragraph "The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."

    Most with CDC defined CFS (and english defined.. I think Wessely was involved in all the name and confusion) arent even diagnosed as they arent that really sick (the stats are 80% are undiagnosed), many dont even bother to see a doctor about thier illness which is mostly tiredness (that is spoken about by Dr Reeves formally of the CDC). The ones who are very sick.. of cause do see doctors and end up getting diagnosed, unfortunatley with CFS, when they've actually got ME as the CDC and England has done some massive kind of cover up to confuse the public on what ME actually is. Most at this site have ME and with ME nutrition and psychology dont cure. and many in fact have actually made many worst due to the actual illness misunderstandings out there.

    A few have died due to psychriatry who believed this illness was caused psychologically.
    ..................

    It's just my view but i truely believe that if someone has non Canadian consensus CFS, they should keep looking for a diagnoses and not allow themselves to be put into a CFS wastebasket diagnoses cause they probably have something else, something which is fixable. (many who just have depression end up nowdays getting labeled CFS due to bad CDC definations of it... the CDC keeps watering down the definations and its been shown throu studies that ones who have other issues end up being labeled CFS).
     
  6. Melodie

    Melodie Guest

    Cigana, if you don't mind answering a personal question, did you suffer from PEM?
     
  7. cigana

    cigana Senior Member

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    Dear taniaaust,

    Thanks very much for your reply, it really does sound like you're in a very bad way due to CFS. All I can say is I know there are many people like you (who have a whole host of issues) who have been treated by the OHC and are slowly recovering. You ask if I can advise you and I'm afraid I cannot as I'm not a physician or practitioner of any sort, but my gut feeling is that the OHC will be able to help you.

    Some of the things I didn't know (what I can think of of the top of my head):
    (a) that when I thought I wasn't stressed I was, and that this stress has many layers - once I really found out how to even tell if I was stressed (i.e. really listen to my body) it became like peeling back the layers of an onion
    (b) that my body wouldn't heal until I absolutely tackled the stress first
    (c) that certain supplements worked better than others (for example one brand of mineral supplement worked while the other didn't and I have no clue why but this is something the OHC have a lot of experience in)
    (d) that there were scientifically validated ways to lose weight (i.e. that it wasn't just determination)
    (e) that experimentation was vital in determining how often and when I ate
    (f) that avoidiing all added oils in any form was essential (except for a certain amount in capsule form and then only a certain brand)
    (g) that while I hadn't sorted out some issues taking probiotics was an expensive waste of time
    (h) that in order for the psychological techniques to work I had to be very consistent and hard working all day every day - this was the hardest part
    (i) that it was possible to detox with the help of supplements (because I kept a log of every nutrient I put into my body over a long period of time and thought this was sufficient due to books I'd read on detox)
    (h) that it was possible to put a stop to the stress caused by this illness

    ...to name a few. I'm not saying these apply to you, my only point is that we feel like we've tried everything, but the people at the OHC have tried far far more. So not to give up hope or assume that because we've tried so much the OHC cannot help us.

    One of the great things about the OHC is that they have treated literally thousands of patients and this experience counts. I think it would be particularly useful to you as you talk about the vast range of supplements you take (and my god you do spend a lot of money!) and while of course it does cost money to see the OHC they can quite possibly save you money in the long run because they know in what order to treat the issues. For example in my case they treat the cortisol deficiency before the gut problems, because the gut problems will only improve once I had more energy from treating the adrenal problems etc. I too was popping many pills but really this was a waste of time because I had to treat each issue in the right order. They will do tests to determine if you are actually absorbing the supplements in the first place. I wasn't and was therefore wasting my time (though I thought I was trying everything!), so it wasn't until they treated that, that things improved.

    You also mention that you've seen many psychologists, but I think that unless they are experts in CFS and are using techniques specifically designed for CFS, then they may not be what you need. This was the case with me too.

    I do genuinely think you could be helped by the OHC, have you tried speaking to them? I wish you all the best in your recovery search.

    Best wishes,

    Cigana
     
  8. cigana

    cigana Senior Member

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    Hi again taniaaust,

    Yes I agree CFS is probably a collection of many different illnesses under one heading. And I agree so many people are going undiagnosed.

    I didn't realise you still distinguish between ME and CFS, thanks that helps me to understand, didn't realise most people on this site actually know they have ME according to its original definition. Here in the UK terminology is confused because we use CFS and ME to refer to the same condition (or rather as we know it set of conditions).

    I do believe you!

    I'll look into that link you posted about CDC - thanks for taking the time to explain this to me!

    Best wishes

    Cignana
     
  9. cigana

    cigana Senior Member

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    Hi Melodie,

    Yes I do suffer from post exertional malaise.

    Cheers,

    Cig
     
  10. Melodie

    Melodie Guest

    Thanks for sharing that with us Cigana. Do you think you will get tested for XMRV? Some of us live in countries where it is nearly impossible to be tested without travelling overseas (not to mention the expense). Anyway I wish you all the best with your improvement.
     
  11. Esther12

    Esther12 Senior Member

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    A bit OT, but I think Alex Howard went to the same school as me.

    I might be getting names mixed up, but I think I knew someone who did well with this. It sounded very anxiety based though, and didn't seem to apply to me ("Do you find yourself getting tireder when you know you have more to do?" type stuff)
     
  12. taniaaust1

    taniaaust1 Senior Member

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    oh.. it wasnt really the point i was trying to make. The point i was trying to make is the CFS (talking about canadian consensus one) is often a lot worst then those other definations of it which many dont consider real CFS. The level of CFS i experience is probably like average as far as CC CFS goes or at least 25% have this level. This degree isnt uncommon and actually right now i consider the level I have to be very very good in regards to how CFS is. Im quite functional (other than not being able to work or drive car). eg right now i dont even have one symptom... ive sat all day and done nothing (to trigger any symptoms) and feel great.

    Thanks for your posts.. I will get in touch with them as Im interested to know if they truely think they could help ME (Canadian Consensus CFS).

    I do know i have trouble absorbing my supplements or jsut cant convert things eg my body dont convert D2 to D3, B vitamins by mouth havent worked in my case hence i take injections. My whole bowel system works slow (i cant remember what its called, there is a medical term for it).. its slow in transit and this is what causes my constipation to which then i need supplements for. The slow transit is due to the nervous system dysfunction (also probably causing the IBS)

    I agree that one can be stressed and not realise it. My past includes being a meditation teacher, so Im well aware when my body etc is relaxed (the body can hold in stress) and yes stress will make any healing of anything more difficult. Stress affects immune system.
    Nods.. sometimes brands of supplments work better than others, Not just brands thou..but also different formulas of vitamins or supplements.. you often can get active forms while others need to be converted by the body. In CFS many may not be converting things well. One can also get a bad reaction from one brand and not another, this can be due to the binders, preservatives, fillers, colourings etc used in tablets etc. I get a bad reaction to some common brands of magnesium, so ended up having to find one i didnt react to... the one i use now is advertised as being organic magnesium.
    My weight is currently very healthy weight for my height. I was stacking the weight on not long ago due to my PCOS but ive got a grip on things again and back to doing things healthily.

    I are interested about the oil thing??? I dotn know if you are refering to something I know about or not. Is that due to you having high cholestrol or due to something else? (there is good oils and bad oils)

    g) are you refering to making room for the good bacteria (probotics)? eg if one has a lot of bad stuff in bowels eg yeast, bacteria, the probotics may find it hard to start to culture?? in bowels.
    i) it is always hard to change thinking and ones mind set. If it was easy people would just naturally do it and no one would ever need things such as counselling. Reprogramming thought patterns are very hard due to what is going on subconsciously..

    j) I think that last one is a yes or no thing... it all may depend on just how bad someones pain is. If someone is in extreme pain, it is near impossible to stop all stress. I knew one with CFS/ME to be on morphine injections due to pain being so bad and she still had a lot of pain.. But yeah.. definately a degree of stress can be stopped in this illness by doing certain things or changing ones expectations of things. The CFS doesnt generally stress me anymore as I've learnt to deal with it. It does stress me thou if im put into a situation where i know im at a risk and i think that is understandable as I dont want to end up unconscious on a sidewalk somewhere. (I have gone unconscious at times for up to 5 mins).

    anyway.. im interested in what they have to say so will contact them with questions. Anyone with ME miracle cures Im interested in what they base their thoughts on. Most of what has just been said is just common sense or what people can find out throu their CFS support groups.
     
  13. willow

    willow Senior Member

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    Hi Cigana,

    Just a quick point in case in case to inform those who don't know that I'm in the UK and would definitely not use the newer term CFS to describe my condition but only ME. I fulfill the Canadian Consensus Definition and ME then distinguishes us from people with non-neuro based diseases, those with depressive illnesses etc. Most PWME (People with ME) I know feel the same way but for various political and financial reasons CFS is the preferred term of most the medical establishment and health industry.

    I'm pleased you've found something that helps you. I hope the improvements grow!
     
  14. cigana

    cigana Senior Member

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    Hi taniaaust1,

    Ooops sorry I didn't reply to your question earlier (you make some very good points by the way I think I agree with them). Yeah about the oils - to reduce symptoms I literally have no added oil or fatty foods whatsoever - I just supplement with 0.5-1g EPA/DHA daily. The only other source of fat in my diet is from that in vegetables grains fruits (no avocado obviously) and legumes. No nuts or seeds either. This works out to about 10% of calories from fat - if I go much above that in whatever way I get worse ear/headaches.

    The probiotics thing is complicated and I'm not even sure what I said in my last post still stands!

    cheers

    Cig
     

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