M.E, depression + glandular fever link? [Archive]

Ted_Hutchinson

10-01-2005, 12:26 PM

I started the thread in Grab it now forum in which highlighted a cheap Sadlight for the treatment of Seasonal Depression. I’ve used light therapy in the past and feel it does have a therapeutic role for some depressives however as I feel it isn't the sole answer and needs to used in conjunction with exercise, diet and lifestyle changes I provided a summary of these as well as the link to the Tchibo Well-being light. Following my inclusion of St John’s Wort further discussion was raised and this lead to a question relating to ME and Depression and this I felt was straying further off topic for the Grab it Now forum. So here’s my understanding of ME/CFS and the Mental and/or Physical illness debate.

First I should point out that I come at this from an oblique angle as I had Polio as a child and now suffer the Late Effects of Polio (Post-Polio Syndrome) the symptoms of which are indistinguishable from those of ME/CFS (http://dspace.dial.pipex.com/comcare/brame/dow003.html). Where I base my understanding on recent research I will highlight one typical example (as above) but if anyone wants further examples then there will be several at Pubmed (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi).

The reason that I feel I have to be careful as an outsider to the ME/CFS mental/physical illness debate is that I know it is a controversial matter for many of those involved who are quite livid at the approach taken by the Medical Research Council here (http://www.mrc.ac.uk/index/public-interest/public-topical_issues/public-cfs/public-cfs_trials.htm ). With substantial sums of money being devoted to lines of enquiry which may only prove effective for a small proportion of patients it seems perverse that the vast amount of research (http://www.nutritional-healing.com.au/content/condition.php?condition=CFS%2FFMS) showing promise in other directions is being ignored. For those who aren’t aware of the details it might help to imagine several similarly based jigsaw puzzles have got mixed together and dumped on the table. Because each have some features exactly the same as another we need to piece together the parts which are identical before we can understand the bits which differ. Fatigue is a feature of several chronic conditions; PPS (http://www.ninds.nih.gov/disorders/post_polio/detail_post_polio.htm), MS (http://www.ninds.nih.gov/disorders/multiple_sclerosis/multiple_sclerosis.htm), ALS (http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/amyotrophiclateralsclerosis.htm), CFS (http://www.cdc.gov/ncidod/diseases/cfs/info.htm), FMS, Parkinson's, irritable bowel syndrome, arteriosclerosis and many, many others and underlying or causing this fatigue is INFLAMATION which is the bodies response to INJURY- including viral and bacterial infection, cuts, strains, operations, etc. and STRESS - including major events such as death of a relative, divorce, and job loss, but also including milder, repetitive stress that is encountered every day. The bodies first reaction to injury or stress is for the cells to release a chemical messenger. This messenger, called a proinflammatory cytokine, tells specialized cells, whose job it is to protect you from invading organisms, to come to the site of the injury or stress. At the same time the proinflammatory cytokines activate resident cells and cells that have migrated to the injury and all of them produce more proinflammatory cytokines setting up a cascade of events that involve the entire body. This link leads to a Model of chronic fatigue syndrome (CFS) development (http://www.nutritional-healing.com.au/content/condition.php?condition=CFS%2FFMS) which explains why any summary I try to present is bound to be inadequate.

Two proinflammatory cytokines, lnterleukin-1 and Tumour Necrosis Factor-a, are especially important in triggering an acute immune response, the body's first line of defense. The acute immune response involves developing a fever, fatigue, loss of appetite, sleepiness and other symptoms. It goes away within a few days. However if the injury/stress is repeated often - say if a person with PPS (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=12409177)/ME/CFS (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=14738459)/MS (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=15124762)/FMS (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=14770104)etc. persists in that stressing situation/activity -then a chronic immune response will set in. This response to chronic stress involves the entire body including the brain and it will produce central fatigue, new muscle weakness, problems with short term memory and word finding, irritable bowel syndrome and other symptoms. There is a clear connection between the presence of proinflammatory cytokines and central fatigue. Psychological stress - the kind that doesn't involve overdoing physically - is perceived in the brain and the brain produces proinflammatory cytokines. This can cause profound fatigue, inability to concentrate and other symptoms.

As this is getting a bit too long I'll take a break and come back to it later.

Sarahsaver

10-01-2005, 12:36 PM

I had glandular fever as a child - age 11 and it took ages to get over. I was exhausted for months after and nobody thought about it at the time but i was a slow developer which may have been related to it.
I can imagine it must be hellishly difficult for anyone living with m.e. or cfs to get believed. I suffered extreme fatigue after having a stroke 3 years ago and, to cut a long story short the dss doctor just didnt believe any of my symptoms. He thought i should be knackered all the time anyway because i am a single parent.
Natural remedies have their place but remember st john's wort reacts with many other medications, and I would always advise your GP as first port of call.

Ted_Hutchinson

10-01-2005, 1:47 PM

Natural remedies have their place but remember st john's wort reacts with many other medications, and I would always advise your GP as first port of call.

For any medication to be effective it will by definition have reaction. Anyone getting advice from a GP must be aware of the advertising which has gone into providing that GP with the information on which to make a decision. See Which report (http://www.which.net/campaigns/health/medicines/dtca.html) and Health Matters (http://www.healthmatters.org.uk/stories/mansfield.html) In fact prescribed anti-depressants are only 18% better than a placebo (http://www.usatoday.com/news/health/drugs/2002-07-08-antidepressants.htm) and Antidepressants cause sexual side effects for nearly 40% (http://panicdisorder.about.com/cs/medsdysfunction/a/sexsideeffects.htm) if you think you are going to get unbiased information from your GP you will be mistaken. I am not against people taking antidepressants, I've taken enough of them in the past, but one should be fully informed as to the risks and make a judgement by balancing the risks. I'm not saying Johns Wort is without risk, but adequate warnings are given in the Zipvit packaging and catalogue as is the case with prescibed medications.

Ted_Hutchinson

10-01-2005, 4:12 PM

A post about a good priced Sadlight [url]
There is a theory that m.e can caused by the body not absorbing nutrients from food properly - which can be an after effect of glandular fever. My daughter had Glandular fever so I have been doing a lot of research about all this (she also suffers from depression - had a bad bout before getting G.Fever) I try to get her to take mega supplements, which I gather can really make a difference, but she is a teenager.....

I realise I haven't yet address the central theme of your question which I will do later on today. In the meantime you can find research confirming the connection between ME/CFS and Glandular fever here (http://www.immunesupport.com/library/showarticle.cfm/ID/4181/)
where there is also a paper describing in more scientific language the theory (expressed in my first reply) regarding Proinflamatory Cytokines. When I get a moment I'll post what supplements moderate/modulate the effect of proinflamatory cytokines.

Cat72

10-01-2005, 6:05 PM

Ted - thanks for all that information. Really good. I have had depression for about 7 years and kind of learnt to live with it.
However in the meantime I have been ill for a year. At first the doctor thought it was my depression getting worse- and put down my extreme fatigue to this.However I had a very bad cold last march and was very ill for 2WEEKS. After it I seemd to lose all my strength and I have became worse. I am only 32 but am constantly tired, feel ill with most foods, have very sore knees, forget things ( had razor sharp memory b4) and get exhausted very easily.I used to be hyperactive B4. I have had to give up exercise since it made me a lot worse.The doc keep saying it was depression. But with depression i dont want to do anything. Now I have tons to do but physically feel too weak.And it is a funny kind of weak -really hrd to explain.Like a balloon with all the air gone.Finally b4 xmas he said I prob have fatigue syndrome. Now im in turnmoil! Sometimes i feel like its maybe all in my head. I have became very sharp tempered , easily irritable and even people who have known me for years have noticed how bloody crabbit I am ! I always thought people with ME could not really walked, I have this image of people with walking sticks hardly able to move. Im not like that just weak feeling, exhausted , mostly having to sleep all day. I apolgys for my sterotype image of ME to sufferers.Because I am still able to be mobile I keep thinking I should be able to snap out of it.It would be great if someone who has experience of ME could give me some advice. Thankyou.

Mumstheword

10-01-2005, 6:47 PM

Hiya,
I have had M.E. or CFS or whatever tag anyone feels like using on that day!! for about 7 years.

Although I would struggle to describe many of my symptoms, reading your post brought a chuckle as you are describing me ;). My memory is not brill, which is why I struggle to describe the symptoms, and I am happy to ignore them when they aren't there!!

My downward cycle probably lasted about 18months, and at the worst, I couldn't make it up the stairs without stopping for a rest at least once. I am not as bad now, but if I overdo things I can end up bed bound for a day, two at the most.

The upwards cycle is very slow going, and getting slower, but it's in the right direction, so who's complaining ;D ;D

i proved positive for having had glandular fever, which was one of the factors in my diagnosis. I managed to work out when the glandular fever had occured, by deciding it must have been the time when i felt most ill! But I had recently started a new job, and worked through it, I'm sure I didn't do myself any favours there.

I'm now in the position where I can't have a proper job as I am unable to say when and for how long I will feel okay (and, actually I'd rather remain at a constant okay-ish than have the severe ups and downs doing too much causes). But the DSS don't believe that so I am not entitled to incapacity benefit. Incidentally, I was told in the process of tribunal that if I claimed for depression I would have probably won the case. Great isn't it. For IB, you are 'awarded' points for your inability to do certain tasks. Answering for a bad day, I was on about 3 times the number of points needed to claim, for physical problems. I didn't claim any mental points as I luckily don't suffer depression (although I do get very down sometimes-not the same thing). The DSS awarded me no points for physical problems (no, none at all, there's a joke) and 1 point for mental problems.

Roughly translated.....it's all in my mind >:(. Now, why didn't I realise that and save everyone the trouble! :-X

In the time I have been on this site, I have received pms from people with M.E., which are always helpful because it makes me realise I'm not alone after all! PM me if you want a chat, or just feel like ranting on for a bit. As more people notice this thread, you'll prob see them post similar stories. And then I'll prob notice things in their posts that I'd forgotten about!!

I hope you haven't got M.E., but if you have, you will learn to manage your life in a way that is best for you. And I, and others, will help you. you might not feel like it at times, but I have really found it helpful just talking to others in the same position as me, and these forums are great for that.

Cat72

10-01-2005, 10:09 PM

Thankyou so much for your reply, it was really good to hear of your experiences. Your first few lines made me laugh and definately struck a cord. ;D
Im really sorry about the Dss its awful the way you get treated by them. I am in a slightly similar positon as was dismissed from my job last september and realise that I am not able to work. ( this is killing me as I have always been a work acholic ! ). My income has dropped dramartically and i am really struggling financially. However I am luckier than you that I am getting invalidity benefit ,for the moment, but they keep sending me in forms + they are sending me for their medical soon.People who are ill, especially with illness made worse with stress ( me , depression) really do not need the hassle of all the questions + fear of poverty. Money worries just make it a lot worse. With my depression I have always been able to work - I have never really been off work ill - but now it is impossible. Who is going to hire someone who does not know if they can make it out of bed from one day to the next. So I hope something works out for you, but realistically you should not have to be proving your ill. Its a disgrace that you had to go to a tribinal.
Can I ask how you found out you had ME and how it was diagnosed ?

elona

10-01-2005, 10:28 PM

Cat72

I know this is a long shot but the exhaustion you mention really strikes a chord with me, especially feeling down BECAUSE you are exhausterd not vice versa.

After years of feeling awful I saw a different doctor who did blood tests which showed I was hypothyroid and although it took at least a year to get medication to the correct level - I now feel much better both physically and emotionally.

It is more unusual for men to be hypothyroid but it might be worth getting a book from the library and seeing what you think.

When I first read up on it I was a textbook case and could not beleive it had taken so long to find out what was wrong.

Cat72

10-01-2005, 10:59 PM

thanks Elona for your reply. I am not exactly sure how hyperthroid effects someone.However my doctor finally decided in December to treat me to pratically every blood test he could think off and hyperthroid was one off them. I tested negative for everything.! I am glad that you finally found out what was wrong with you and are now feeling better. I think not knowing makes things a lot worse. But I am glad you posted here as probably a lot of people with hyperthroid will be able to relate !+ gives them a chance to discuss it , especially since its not that common.
Good luck for the future !;D

Ted_Hutchinson

11-01-2005, 1:31 AM

Proinflammatory cytokine levels in hyperthyroidism. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=12722837)

Will try and devote more time to this thread tomorrow but I do find reading these metabolism research abstracts very hard going. The more I read though the more convinced I am that Omega 3's and Carnitine supplementation provide a moderating effect on brain metabolism (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=15363640).

Urinary excretion of carnitine in patients with hyperthyroidism and hypothyroidism: augmentation by thyroid hormone. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=846404)

A further link for those with thyroid problems Major Revision of Hypothyroid Diagnosis Guidelines (http://www.mercola.com/2003/mar/1/hypothyroidism.htm) for those who want to know where to get Natural thyroid mention in the article can ask Dr. Mansfield who I know used to supply it (https://www1.securesiteserver.co.uk/replete/nuke/modules.php?name=Content&pa=showpage&pid=6)

Savvy_Sue

11-01-2005, 3:05 AM

Ted's obviously the expert: don't overdo it Ted, I know that technical stuff is hard going when you're in the best of health!

Two possibly useful websites about ME are:

The ME Association (http://www.meassociation.org.uk/)

Action for ME (http://www.afme.org.uk/)
I believe they take different approaches in many ways, so you may find one more helpful than the other.

And if a young person is involved then

Association of Young People with ME (http://www.ayme.org.uk/)

I don't know if they'll help the original poster: if it was possible to forestall the slide into ME then clearly that would be good!

My own experience: I suspect I have (had) mild ME for over half my life, following a bout of glandular fever at 18, and suffered from mild to moderate depression, both postnatal and 'other', for longer than that. But it's never been formally diagnosed in my case: it was at its worst before I married and I rarely worked a full month, but then improved. There are times when I have to pace myself: I now rarely go out in the evening because I just don't function well the next day, and there are times when I come in from work and sleep for 3 hours.

I know two people who've had to take early retirement because of ME, and I know families where teenagers have been really ill for a long time. I can also offer sympathy where family members won't try things which might well help!

Mumstheword

11-01-2005, 4:15 PM

Can I ask how you found out you had ME and how it was diagnosed ?

I saw a few consultants (general, neurological, can't remember the others, but there were a few!!!!) before eventually the general one referred me on privately to an M.E. specialist in Lancaster, about 30 miles away. It was he who tested me for glandular fever amongst other things (the others had all run their own series of tests too, must have given an armful of blood throughout the process). He discussed my symptoms with me, and my mum who had come along as driver and memory! He said that I had classic symptoms of M.E., and at a later appt confirmed that the cause was probably the glandular fever that I had tested positive for having had at some time.
The process of diagnosis took well over a year.

elona

11-01-2005, 4:22 PM

I am actually hypothyroid and was tested for it years ago but was told that at the time my results were normal - it was only when they tested for the presence of antibodies years later when levels had dropped to the point it could not be dismissed any longer.

The irony is that you almost need to be feeling well to have the energy to explain and insist there is something wrong.

nearlyrich

11-01-2005, 7:13 PM

I have just been diagnosed with Fibromyalgia and I am trying to get well so i can go back to work soon. Anyone else got this, any tips for managing it?

Mumstheword

11-01-2005, 7:25 PM

The irony is that you almost need to be feeling well to have the energy to explain and insist there is something wrong.
Spot on.
And that's why I lost out on permanent health insurance and dss payments once they started investigating my case and making life difficult through stress!

M.E.2

11-01-2005, 11:50 PM

Hi,
I have a Google Alert on a daily basis with the heading "Chronic Fatigue". I find it helpful and positive to hear from around the world re M.E
Re Action For M.E.---I think I pay an annual fee of £14 to £15 and it is worth every penny.They have vast quantities of literature to help you and your GP.There are also many local groups that you can join.
I agree with Mumstheword about talking to other sufferers and learning to manage your life.
If I can help,please pm me.

Ted_Hutchinson

12-01-2005, 2:00 AM

Ted - may I ask if you have come across any research about the progeny of PPS sufferers? My mother suffers from PPS and is convinced that she has passed problems of various descriptions to her children and grandchildren. It would be really nice to put her mind at rest, but I haven't been able to find any information about this aspect of PPS.

I would like as dad to two daughters with three blood related grandchildren to be able to say that there is no genetically related significance to having had polio. But I can't because I know it isn't true.

If you go to SERUM CARNITINE LEVELS in POST POLIO (http://www.upnaway.com/~poliowa/Serum%20Carnitine%20Levels%202002.html) you will see that it is true that the progeny of people who have had suffered polio are experiencing low serum carnitine levels.

It may be that a propensity for low carnitine levels may be a precursor to actually contracting polio and that this inherited characteristic is present both in those who actually got Polio and their offspring but apart from that I can't give you any logical reason how or why the children and grandchildren of those people who were the victims of polio should be different from anyone else. However as L'carnitine is known to affect the motility of sperm (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=15149558) and has beneficial effects on erectile dysfunction (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=15072869) it clearly operates at the very basis of human metabolism both in the body and the brain so a virus which is able to modify reactions at this level might affect progeny.

Carnitine is made in the liver so maybe having underfunctioning livers is an inherited characteristic of those who may then be more vulnerable to contracting polio. Clearly there are personality traits which people who got polio display. You only have to get three people with polio together to have an arguement as they each know better than the other. Working on a committee for PPS I can assure you was not a happy bunny scenario.

L'Carnitine is as mentioned in the link above is available cheapest from ZIPVIT (http://www.zipvit.co.uk) unless anyone can do me a favour and find a cheaper supplier. Since I've been taking L'Carnitine I've been 100% better and am now able to stand to cook meals and wash up. I can potter round the garden and do the odd job. I don't have to worry so much when I go out and I am much more confident about the future. I had got to the point where I was considering moving house to somewhere wheelchair friendly and had been considering purchasing a mobility scooter. L'carnitine hasn't cured the late effects of polio but it does enable me to function sexually (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=15072869) and physically so I'm extremely grateful I found the link and that it works for me.

L'carnitine isn't a cure. The neurological pain I get in ankles and wrists is still there and in fact because I am standing more and doing more than previously I think it is worse but that's my fault for not pacing myself better. I still find I "Hit the Wall" too often. By that I mean get to the point of no return. I do too much and simply cannot do another thing. I've used the word fatigue on this thread as there isn't another word appropriate but for those with ME/CFS/FMS/MS and related conditions Fatigue isn't simply being tired, it's a state of being physically and mentally paralysed so that you are like a rabbit trapped in the headlights, totally unable physically or mentally unable to act sensibly, rather than simply a bit tired.

I should point out that I am way out of my depth with this. I've only found out about L'Carnitine three months ago so have been trolling Pubmed (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed) and Google like a madman to try to find out all I can. I cannot prove that the health problems my daughters exhibit are attributable to my prior polio. I would prefer to think they couldn't be. But I suspect the opposite.

ectile

Savvy_Sue

13-01-2005, 2:16 AM

I have just been diagnosed with Fibromyalgia and I am trying to get well so i can go back to work soon. Anyone else got this, any tips for managing it?
No, but a work colleague does and it's clearly no fun.

Have you seen:

http://www.fibromyalgia-associationuk.org/

and

http://www.ukfibromyalgia.com/ - claims to be "Absolutely everything you need to know about Fibromyalgia"

metro_gnome

13-01-2005, 6:44 PM

I have just been diagnosed with Fibromyalgia and I am trying to get well so i can go back to work soon. Anyone else got this, any tips for managing it?

Have you looked at whether acupuncture might help? It seems to be very good for so many illnesses and complaints that I would have thought it was an avenue to pursue - but do find a good practitioner, ideally someone recommended.

nearlyrich

13-01-2005, 8:16 PM

Savvy_Sue

14-01-2005, 2:15 AM

Thanks for your suggestions Savvy Sue & Metro Gnome, I am hoping to get through this without relying on drugs too much.

I have looked at lots of sites on the internet over the last few days and I have been in touch with the local health authority regarding self help groups in the area. No-one in my circle of friends, work colleagues etc, seems to have heard of it and as I don't know too much about it myself it is difficult to know how it will affect me in the longer term.

I was pleased to see that you said a work colleague suffered from it, that gives me hope that it will be possible to work. ( I don't mean I am pleased that they suffer from it, hope I make myself clear on that.)

I have been looking at alternative therapies including nutritional supplements and exclusion diets and would be interested to find out more about accupuncture etc.
I did understand the sense in which you said it! I don't know HOW my colleague copes, I know she is often in a lot of pain and regularly takes quite strong painkillers and rests a lot when she is at home. Sometimes she goes and has a lie down at work too. But she just does NOT want to stop work.

I know that she tries to exercise regularly as well, she loves swimming and goes to a session when the water is extra warm whenever she can. She was also referred to a pain clinic where she spent a week being assessed and having suggestions made to help improve her quality of life.

I hope you can find local sources of support etc.

catznine

14-01-2005, 11:17 PM

Thank goodness I found this thread! Now know I am not alone! I have just been diagnosed with CFS having been suffering from fatigue for more than a year - actually I have been like this on and off, sometimes a lot worse, for the last 13 years!

About that time I was diagnosed with depression but they did some blood tests and found Epstein Barr cells in my blood but didn't explain this, just treated me for depression. I was so weak that to get down the end of my garden I needed a series of seats and benches for rests! I was also always very cold, my joints were very painful and my words wouldn't come out right.

Over the years I have been treated for depression but have possibly needed that as both parents have died in that time. I have learnt to pace myself so that if I have a busy day I have 2 or 3 quiet ones to recover. I now work minimum hours in the late afternoons and this gives me most of the day to summon up the strength to get to work, it is a job I very much love and feel if I didn't do this I would soon be suffering from depression and I am definately not depressed right now! I am also lucky enough to get a lot of leave so I get time to recover ;D

Is it possible that I have been suffering from CFS all along? and was there anything I could have done to prevent this especially the current setback.

Cat72

15-01-2005, 8:45 PM

Hi
Yes this is a good board, it does help to talk to such nice people and hear about their experiences. Catznine you said they found Epstein Barr cells , excuse my ignorance but what does that mean ?
Also could anyone help me out, I got my hospital appointment in today for march to finally see a consultant. I am a bit worried as to what to expect. Can anyone give me any advice as to what might happen at a first consultation. Im afraid I cant get it out of my head that there is nothing up etc as today I feel pretty ok. Part of me keeps thinking HOW can they tell whats wrong with me ? is there anything wrong with me. Gives me a sore head ! ::)

jellyhead

15-01-2005, 9:36 PM

i think eppstein barr is the same virus as glandular fever, but i could be wrong. my doctor called my glandular fever 'infectious mononucleosis'. i was at uni, pregnant. i was on my work placement year so as i was an office worker my doctor tested me for glandular fever (i told him i'd been in contact with someone who had it, in actual fact i shared a coffee cup with him at the uni coffee machine, poor students do that but in hindsight it was a daft idea!!). my mother got it from me but at least three people i know of, all male, also got it but their doctors refused to test students for glandular fever and insisted it was depression! they were all put on antidepressants that didn't help.

my fatigue keeps coming and going, even 2 years after having my baby i was being tested and diagnosed with glandular fever each time i asked for an explanation for my extreme fatigue, aching joints etc. i've got it back again, 8 years later, i'm pregnant again but even so other people have told me i shouldn't still be getting glandular fever after so long.

being fobbed off by my doctor was no help so i've tried to find solutions myself. i may not have ME but some of you might find the following worth trying anyhow:

1) - iron. i find that i'm often anaemic so taking iron does help. i have IBS and can't tolerate iron all the time, i take it when i start getting anaemia symptoms and it does help.

2) fatigue can be a symptom of IBS. it can affect your food absorption and also lowers your immune system. peppermint capsules (colpermin) help, or you can drink peppermint tea. avoid triggers such as fatty meat and fatty or sugary foods. belgian chocs are a definite no-no!

3) omega 3 fatty acids (fish or hemp oil) are fantastic for memory loss. they help you concentrate and remember things, make you almost normal.

4) i found out i have PCOS (polycystic ovary syndrome). it also causes fatigue, aching joints, memory loss etc. it might be worth investigating if you're female. it can also lead to insulin resistance, a pre-diabetic condition where you get fat and are always shaky and hungry.

i find that fish oil is the most amazing thing i've ever tried, the effects are really noticable, i don't feel like my head is full of cotton wool anymore, apart from bad days. anyway, just thought i'd mention those things even though i'm not diagnosed with ME. glandular fever has knocked me for six these past 8 years and i get really sick of being told by doctors that i'm depressed when i know full well i'm not. i have been depressed in the past so i know what it's like.

Ted_Hutchinson

16-01-2005, 12:16 AM

Exploratory open label, randomized study of acetyl- and propionylcarnitine in chronic fatigue syndrome. (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&li st_uids=15039515)

Both high EPA Omega 3 and L'Carnitine are available cheapest from ZIPVIT (http://www.zipvit.co.uk)

A fuller picture of all the possible interactions which could give rise to CFS available here Possible contributing factors or factors which may be mistaken for CFS (http://www.nutritional-healing.com.au/content/condition.php?condition=CFS%2FFMS)

As the cost of trying high dose Omega Juice and high dose L'Carnitine is relatively minimal (if you use Zipvit) and the dangers of side effects or counter reactions infintisimal I do hope everyone with the condition will give it a 2/3 month trial. (Fish allergic folk could use flax oil or ordinary brown linseed as a replacement for the omega juice fish oil). Although my the condition underlying my inflammatory response was originally polio the action of the proinflammatory cytokines may be similar irrespective of the origin although the presentations will differ according to the weakest points in the body concerned.

Anyway since I've started on the above supplements I'm better than I have been for years, however I and other readers, must note this doesn't remove the underlying cause. It just enables you to moderate the effects. If it takes 2 weeks or 2 months to start seeing an improvement it will take more or less the same time to return to your current baseline should you stop the supplements.

Savvy_Sue

16-01-2005, 2:40 AM

you said they found Epstein Barr cells , excuse my ignorance but what does that mean ?
I'm as ignorant as you are, but Barbara Windsor was on Woman's Hour (http://www.bbc.co.uk/radio4/womanshour/2005_02_tue_01.shtml?wh_h_img) on Tuesday this week so that may be useful. There are also links to an Epstein-Barr (http://www.healthy-r-us.org/epstein-barr.htm) site (and to East Enders, but that's probably less informative.

She was very ill, but was about talking a workout video she's produced, ostensibly for older women, but it sounded perfect for the less mobile! Exercises to be done before getting out of bed, at your own pace!

Also could anyone help me out, I got my hospital appointment in today for march to finally see a consultant. I am a bit worried as to what to expect. Can anyone give me any advice as to what might happen at a first consultation. Im afraid I cant get it out of my head that there is nothing up etc as today I feel pretty ok. Part of me keeps thinking HOW can they tell whats wrong with me ? is there anything wrong with me. Gives me a sore head ! ::)
I am sure that if you have been referred to a consultant they cannot say that there is nothing wrong with you at a first appointment. I don't know exactly what they will do or say, but there are lots of tests which may be done to eliminate rare but possible explanations for your symptoms.

Because 'cotton wool head' is a common problem with the kind of things we've been talking about here, I do recommend keeping a symptom diary of some kind or at least a list of symptoms. If you are not up to it, do you have a family member who can help with this? Then if you arrive on a cotton wool day, you have a prompt. And if you arrive on a good day, you can say "I'm OK today but in the last 3 weeks I have been unable to get out of bed on x days / in bed by 7 pm on y days / too tired to cook a meal on z days" etc.

At times this will make depressing reading, especially if you seem to be getting worse or not improving. But in time - hopefully! - you will see that you ARE getting better / not deteriorating, even if you don't FEEL any better. You can also record what you've tried and whether it seems to work!

If you have a good relationship with your GP, is it worth asking him what may happen at the consultation and what the consultant's speciality is?

Mumstheword

16-01-2005, 2:03 PM

Since I've been taking L'Carnitine I've been 100% better
Just ordered some, along with some omega3 juice (which will go in the bin if it tastes yuk, and be replaced by capsules ;D) from zipvit.

Two of your posts above came across with such high recommendations that, if my memory allows me to, I will try these out for a couple of months.

Have you tried co enzyme q10? I haven't, but ask because I have seen it associated with helping conditions such as ME

My main problem is forgetting to take any tablets. Even associating them with mealtimes doesnt help, as if I am distracted at all, it disappears from memory, only to resurface hours or days later ;D But I'll give it a go!

Cat72

16-01-2005, 5:44 PM

Im the same can never remember to take pills. I bought high grade fish oil about a month ago and keep forgetting to take them - so I cant say if they work or not !! :-/

M.E.2

16-01-2005, 7:52 PM

I use xreminder pro on my pc which is a calendar,apps. diary and reminder. It works for me as I have to remind myself about nearly everything and when the reminder flashes up for tablets,off I go and take them.If I am stuck in bed or the pc is down then I use the wife but she tends to forget as well sometimes.I have tried the pill boxes with daily compartments but the box tends to get put aside and out of sight--out of mind.

Mrsbojangles

25-01-2005, 9:48 AM

Sorry will post later

Mumstheword

25-01-2005, 10:07 AM

Well, we've lost a fair few posts on this discussion, but never mind.

Has anyone any comments re the co enzyme q10? (I'd forgotten I'd asked about that!!)

Carnitine update...I've been using this for about 5 or 6 days now, and taking 2 first thing and another at lunch time. ted had mentioned that they could keep you awake if taken at night. I've had an odd reaction to them in that I think I have more energy, although my eyes feel very heavy as if i am very tired. I am usually more affected by weakness and feeling drained than feeling sleepy. It's a very unusual feeling for me to be ready to sleep before my body has run out of energy, it's usually the other way around!
I will carry on for now, and report back any other reactions!

Phoebs

25-01-2005, 10:22 AM

Well, we've lost a fair few posts on this discussion, but never mind.

Has anyone any comments re the co enzyme q10? (I'd forgotten I'd asked about that!!)

CO Enzyme Q10 - takes a good two or three months to properly get into your system and working, so persevere with it

I found it really useful for energy levels - until brainfog took over and i wasnt remembering to take it regularly

Like all supplements and alternative/traditional therapies it will work for some ME / Fibromyalgia sufferers, it wont for others and for others still it will worsen symptoms. Sounds rough but with ME or Fibro you just have to come to the acceptance that this is life, and if you're fortunate enough to find somethig that works stick with it until it doesn't work for you any longer.

If ME (CFS Fibro whatever else it gets labelled - I've been fgiven a multitude of labels) is bad enough to stop you working, as it is with so many of us, money is tight, energy and resilience are low and all you want is to be normal again........... my advice to anyone is take on peoples recommendations but read up as much as you can, ask around etc before you try something new, above all make sure it isn;t going to counteract with anything you are already doing, speak with your gp if you are one of the lucky ones to have a gp worth their name, and then only then give it a go........ but dont spend too much money, its all too easy to do

Frances_O

25-01-2005, 3:31 PM

I suffered from Glandular fever about two years ago, and had it twice. Since then I never have much energy, and I now have a ten month old baby and it sometimes seems like it's getting worse!
My doctor tested my thyroid etc, and couldn't come up with anything, then I found out I was pregnant and it was kind of forgotten about, as I was tired all the time during pregnancy, but the tiredness was just put down to being pregnant! 10 months on, I still feel as bad.... I get worse during winter time, and have suffered from depression on and off since I had glandular fever too.
Reading this post, I think I may go back to the doctors now, and try to get them to find out what the hell is wrong with me! Lol
I just wake up, even after 10 hours sleep, and still feel exhausted.
Sorry if this has taken away from the direction the post was going, but I just thought I'd get it off my chest and tell someone....!
Fran
xx

Mumstheword

25-01-2005, 5:12 PM

Hi Frances_O, welcome to this thread.
don't worry at all about having a rant on here- helps sometimes doesn't it!
Firstly, I hope that your gp can be of help- and diagnose something easier to treat! However, waking from a good night's sleep totally unrefreshed is a symptom of ME. It's probably symptomatic of other things too. Part of being diagnosed with ME is having lots of other things ruled out, and also having suffered for at least half a year. The glandular fever link is how I ended up with ME.
But during pregnancy, I felt exactly as my consultant ME specialist had said I would...in better health! I was the usual pregnancy tired, but my other symptoms eased.
If you need to chat, feel free to pm me.
xx

Ted_Hutchinson

25-01-2005, 6:22 PM

Insomnia Tips for Those with Chronic Fatigue Syndrome (http://chronicfatigue.about.com/od/articles/a/insomnia.htm)

pennyforthem

25-01-2005, 6:47 PM

Spot on.
And that's why I lost out on permanent health insurance and dss payments once they started investigating my case and making life difficult through stress!

The CAB's job in part is to help people like you to prepair your cases !

I found the CAB incompetent which does not mean yours will be! And their are other servises available to you, you can usually find an advertisement on walls in medical areas were the patient may be descriminated against or unable to mentaly defend themselves against anything. You could also try the disability website they may offer help or know someone who can. If this all fails I would get in contact with my Doctor and explain that you are having problems with the forms/timescale/health and if he can offer no advice or help at least your problems with this process will be noticed rather than suffering in silence it may also help your case.

Cat72

28-01-2005, 8:36 PM

Hi Frances
Im sorry to hear you have been feeling ill for so long. Especially with a baby it must be a huge strain. I have started reading up about ME and there is a very strong link with Glandular fever especially more so if you have had it twice. Although my pal had glandular fever and it took her about two years to recover. I have just got a good book by Dr charles shepherd about ME and it mentions the Glandular fever link. Its good for all sorts of advice. You could probably get your Library to order it for you or its £10.99, worth every penny.
Please just pester your doctor it is hard but I keeped going to every doctor in my practice till 7 months later I finally got one to listen.Its important you get an explination for your own sanity and also so you can be strong enough for your baby. Good luck x.

metro_gnome

06-02-2005, 10:51 AM

This may be a long shot, but I have just started wearing a magnetic bracelet for my aches and pains (long term back problems!) and have noticed a distinct increase in my overall feeling of well-being and energy. I was introduced to it by a colleague at work who had been unable to work because of arthritis and who is now loads better. I have sent one to my daughter (see starting post on this board) and though she isn't sure whether it is working she has told me that she is starting to get her life sorted, she's making more of an effort to get fit and she walked up a long, steep hill carrying books and shopping the other day when she would normally have taken a taxi! Coincidence it may be but it seems unlikely to me. When she gets home from Uni I'll get her to take it off for a few days and see what happens. If anyone fancies trying one of these get in touch and I'll give you details (don't try any magnetic bracelet, some are much better than others)they do have a 90 day money-back guarantee so there's not a lot to lose.

BaritoneUK

22-02-2005, 7:02 PM

Great! Thanks for this thread- So much to read, I know now I am not the only one struggling with this one...

JayS

22-02-2005, 7:38 PM

For any medication to be effective it will by definition have reaction. Anyone getting advice from a GP must be aware of the advertising which has gone into providing that GP with the information on which to make a decision. See Which report (http://www.which.net/campaigns/health/medicines/dtca.html) and Health Matters (http://www.healthmatters.org.uk/stories/mansfield.html) In fact prescribed anti-depressants are only 18% better than a placebo (http://www.usatoday.com/news/health/drugs/2002-07-08-antidepressants.htm) and Antidepressants cause sexual side effects for nearly 40% (http://panicdisorder.about.com/cs/medsdysfunction/a/sexsideeffects.htm) if you think you are going to get unbiased information from your GP you will be mistaken. I am not against people taking antidepressants, I've taken enough of them in the past, but one should be fully informed as to the risks and make a judgement by balancing the risks. I'm not saying Johns Wort is without risk, but adequate warnings are given in the Zipvit packaging and catalogue as is the case with prescibed medications.

I would just like to comment on Ted's answer about drugs reaction.

Sarahsaver correctly said "remember St John's Wort reacts with many other medications, and I would always advise your GP as first port of call."

St John's Wort can induce drug metabolising enzymes and a number of important interactions with conventional drugs. The amount of active ingredient can vary between different preparations of St John's Wort and switiching from one to another can change the degree of enzyme induction. Furthermore, when a patient stops taking St John's Wort, concentrations of interacting drugs may increase, leading to toxicity. Antidepressants should not be used with St John's wort because of the potential for interaction.
Source: BNF44 Sept 2002

It goes on to list interactions with different prescribed drugs in these catagories: antibacterials, anticoagulants, antidepressants, antiepileptics, antivirals, barbiturates and primidone, caridac glycosides, ciclosporin, 5HT(1) agonist, oestrogens and progestogens, and theophylline.

Therefore, as Sarahsaver, advised it is very important to talk to your GP about this drug to ensure it is not interacting with another drug you are taking, or at least to be aware of the possibility of interactions and their implications.

I would further advise that you inform your consultant well in advance (months) if you are scheduled for surgery or other procedures. St John's wort needs to be figured into the equation at this time too.

I don't wish to scare anyone here, just to ensure anyone contemplating taking St John's wort or are already taking it, talks to their GP.

Best wishes

JayS

Ted_Hutchinson

22-02-2005, 8:16 PM

.........<snip..........
St John's Wort can induce drug metabolising enzymes and a number of important interactions with conventional drugs. The amount of active ingredient can vary between different preparations of St John's Wort and switiching from one to another can change the degree of enzyme induction. Furthermore, when a patient stops taking St John's Wort, concentrations of interacting drugs may increase, leading to toxicity. Antidepressants should not be used with St John's wort because of the potential for interaction.
Source: BNF44 Sept 2002

It goes on to list interactions with different prescribed drugs in these catagories: antibacterials, anticoagulants, antidepressants, antiepileptics, antivirals, barbiturates and primidone, caridac glycosides, ciclosporin, 5HT(1) agonist, oestrogens and progestogens, and theophylline.........<snip>.............

JayS

The extensive use of hypericum in Germany (sixty-six million daily doses in 1994) has not resulted in medical reports of serious drug interactions or even toxicity after accidental overdose. (http://www.womensmedia.com/health-St.Johns-wort.html)

Fatal toxicity of antidepressants in England and Wales, 1993-2002 (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15704381)

Edit New evidence from NETDOCTOR added
Herbal remedy 'better than drugs at treating depression' (http://community.netdoktor.com/ccs/uk/depression/facts/news/article.jsp?articleIdent=uk.depression.facts.news. uk_depression_article_18942)

JayS

22-02-2005, 11:07 PM

The extensive use of hypericum in Germany (sixty-six million daily doses in 1994) has not resulted in medical reports of serious drug interactions or even toxicity after accidental overdose. (http://www.womensmedia.com/health-St.Johns-wort.html)

Fatal toxicity of antidepressants in England and Wales, 1993-2002 (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15704381)

Hi Ted,

Thanks for your reply. I'm not referring to accidental overdose, I'm referring to the need for your GP/doctor/consultant/surgeon to know their patient is taking St John's wort if they are prescribing other drugs, as there maybe an adverse interaction between St John's wort and the drugs.

I'm not even supporting an argument for, or against, taking St John's wort; I am only saying anyone treating someone taking it, must be aware of the whole picture (holistic).

I hope you are not taking offence by this comment, none is intended.

Best wishes
JayS

MSE Controller2

23-02-2005, 12:01 AM

JayS

23-02-2005, 12:06 AM

Cat72

25-02-2005, 11:26 PM

Hi
Hope you are all ok.I have had joint ( knee pain) for a while and from what I have understood this is a symptomn of my ME. In fact even one of the essential ones !! ( the top 8 list of how m.e should be determined). My doctors are not to ggod with their knowledge of m.e and now have said that the joint pain is due to Chondromalacia patellae. If this is the case then is this what M.e patients usually get or is their joint pain something else. Im probably not making myself too clear, but what is joint pain in M.e usually attributed to ? do they say what they think it is ( i presumed it was the virus causing viral arthriits ) .Maybe someone who has M.e and has joint pain can help me out as to what caused their joint pain and what the specialists said about it.The big problem i have with the docs explination is that im in my mid thirtys ( not the general age group) and also have had NO knee injurys at all in the last twenty years.The doc said that it should clear up in about 6 weeks if i do exercises and rest. Uhmn, done nothing but rest for a year !( a year that i have had this pain) !

Honey9036

26-02-2005, 3:20 AM

Hi

Sorry to hear you have been in pain with your knee. I have ME so I can totally sympathise!

My personal experience, however, has been more related to *muscle* pain and tenderness - as opposed to *joints* (in fact *Myalgia*, from Myalgic Encephalomyelitis, translates as *muscle pain*). And my pain is generally all-over and varies in intensity from day to day.

What you have described sounds much more specific. Believe me, you DON'T WANT to have ME!

Obviously you feel unhappy with the situation, which is understandable - no-one wants to be in constant pain with no real explanation. Maybe you should visit your doctor again and ask to be sent for further investigation (eg xrays). Or perhaps you could be referred for some physiotherapy to help strengthen the muscles around the knee joint to give it additional support.

From what I have read about Chondromalacia Patellae it can be due to natural wear and tear and can start from age 40 onwards. The words Chondromalacia Patellae means *softening of the cartilage of the knee-cap*.

I found a good link here: http://www.orthoseek.com/articles/chondromp.html it mentions a few ways of alleviating the pain.

I hope you manage to find a solution to your pain. Definitely speak to your doctor again before trying any course of treatment. Anything I have mentioned is purely my opinion.

Best wishes

Lori
:)

Ted_Hutchinson

26-02-2005, 9:17 AM

Hi there,

please can I direct your attention to MSE policy on health advice (http://forums.moneysavingexpert.com/showthread.html?t=31048). I think some of the posts here are very close the giving advice. While its obvious that some people here are very knowledgable, your doctor should always be the first port of call for medical advice.
May I suggest the wise will also double check the medical advice from the GP/Health-professional against information from an impartial source such as
What Doctors Don’t Tell (http://www.wddty.co.uk/factsheet/PRESCRIPTION%20DRUGS/index.asp)

Cat72

26-02-2005, 12:25 PM

Hi Honey thanks for replying. I have been diagonasised with chronic fatigue syndrome but his time had to attend a different doctor , as my other docs not available for 6 weeks! My usually doctor is very nice and I am due to see a consultant finally in 4 weeks.I have experience the constant tiredness , putting it midily,and have been unable previously to get out of bed. Thankfully I have improved a LOT recently and most of my symptons have toned down a lot - even starting to remember things a bit !. Sometimes my legs would feel " itchy" at night but it has been the joint pain that has been constant and never improved. I was just wondering if anyone else with joint pain and fatigue syndrome/ M.E had any explination for what their joint pain is. With the docs explination of chondromalacia patellae he related it more to teenagers symptons ie." you are a bit unfit, or maybe damanged yourelf running" ( yeek i think i ran for a bus in 1994) it will go away in about 6 weeks ! In the meantime here is some ibrufen.

Ted_Hutchinson

29-03-2005, 9:37 AM

A news item on radio today prompted me to include the following ling to The National Institute for Clinical Excellence (http://www.nice.org.uk/page.aspx?o=home) where you can find the guidance for Depression (http://www.nice.org.uk/page.aspx?o=cg023)
in particular the following
CG23 Depression - Information for the public (http://www.nice.org.uk/pdf/CG023publicinfo.pdf)
From which I quote
Exercise
Exercise can improve your health and lift your mood. Your GP may advise you to follow an exercise programme. A programme usually consists of up to 3 sessions per week (lasting 45 minutes to 1 hour) for between 10 and 12 weeks.

I wasn't aware, till I heard the news item that this can be prescribed by your doctor. So it may be relevant to other readers as well.

Baglady

30-03-2005, 11:29 PM

Hi all. I have a tale of woe similar to most of you, been ill for 11 years now, have tried various complementary therapies because mainstream medicine offers so little. Had battles with DSS which CAB helped with.

Last summer started having Kinesiology, and learnt that not only did I have Epstein Barr virus, but also Cocksackie virus, both implicated with being forerunners of M.E./CFS. In addition, I had a bacterial infection of long-standing, the one causing Lyme disease (similar symptoms to M.E./CFS).

I feel I have turned the corner and feel very hopefulfor the future. It wont be overnight because none of us got ill overnight. Its no fun watching your life go down the pan and feel so helpless. Anyway, I can recommend trying this treatment, its fascinating as new things surface to be dealt with, like peeling off the layers and feeling that much better than before.

Thanks for the tip about zipvit, I agree that its really hard for us who can hardly string 2 thoughts together to try and make sense of whats happening and put it right, and have to convince the doctors and DSS that yes we are ill and no, we dont have the energy to explain. Thats why I love this site. All the money I can save means I can afford to eat better, buy supplements and get regular treatment now I've found something that is helping, and hopefully get my life back. I wish the same for all of you too and think we should give ourselves a round of applause for keeping going when this is such a rotten, soul destroying and often hidden illness. Cheers! :T

Cat72

01-04-2005, 12:19 PM

Hi
Went today for my long awaited hospital appointment. My doctor has thought that I have cfs and this was my first consultation.
Nurses were lovely but the doctor :eek: . Did not ssem the slightest bit interasted andwas totally unhelpful. Im am really upset as now she has definately diagonised me but offered no advice or help or information. Crikey never even got a poxy leaflet.
She said that it was up to me to get better , that I had a virus a year ago but the virus only lasted for a week but my body/ head still acts like its there . She seemed to linger far too long on about the fact that I have had depression for several years, but heck this was the reason my diagonsis was hindered before. I may have depression but its not what is making me ill. ITs th CFS which even the doctors now admit I have.
So I have just to get on with it ! The only advice she offered was that I should start small walks every day and build up. She was totally bloody useless !
I am in a lot of pain with my knees, which I told her about, and this is inhibating my sleeping and walking..Lets not even start on the fact that im too bloody tired to eat some days.She said that she would recommend me to a phsotherapist " if i want" but that I would be waiting several months. You might guess im disgusted. I have read some of the ME association info and was under the impression that information would be given about the condition -what it is etc and a rehabilation programme organised . What now ? Im not futher forward and just want an idea of how to get my life back.
Any advice would be gratefully appreciated .

Savvy_Sue

01-04-2005, 8:24 PM

Any advice would be gratefully appreciated .I am really sorry you had such a bad experience with the consultant. Two bits of non-medical advice would be to go back and see your own GP - or any other GP at your practice who seems the least bit interested if your own is not - now that you have the diagnosis and ask for help and advice. The other is to see if there is a local ME support group and get in touch with that.

The trouble with ME is that what suits one person will cause major problems in another: things which 'ought' to help do not necessarily do so, and things which 'ought not' to cause any problem may exacerbate all your symptoms.

One day when you feel you have something other than cotton wool in your brain, reading all of this post again might be helpful. You could even take it in slow stages over a few days. Write down things you have tried, and what result they have had, and write down things you have not tried but which you might like to. Don't try lots of new things at once: you won't know which bits of your new regime are working and which are making you worse! Get a friend to help if you need to.

If the knee pain continues then you could ask your GP for a referral specifically for that: or try the physio first even if it takes a while. If you've already been given exercises but haven't been able to do them then take advice about that as well.

I don't know if this helps, but I hope it does!

Baglady

01-04-2005, 11:52 PM

You could try seeing if your GP will spend the money on referring you to a specialist M.E./CFS centre, theres one in Essex and one at (I think,) Kings College Hospital, London. These are only the ones I've heard about. There may be more. There you may get to see an Occupational Therapist who can assess you and formulate a treatment programme.

Also, get down the library and get hold of everything you can find about it, including the self-help books. There are support groups you can ask about, too. I found some of Teds posts earlier to be interesting and intend using some of it with my GP next time. (Thanks Ted.)

Its all too easy to get lost in the maze of spending loads a' money with herbalists, homoeopaths, naturopaths and the like, (I even spent nearly 2 grand I didn't have on having my mercury fillings removed), and while I have more time for complementary medicine than mainstream, sometimes the contributary factors are so convoluted it takes a lot of time and money to unravel whats gone wrong. So read up, ask around, look at diet, supplements, stress etc for starters, then choose wisely how you spend your dosh.

I found it difficult to stop fighting the illness, and when I finally allowed myself to let go and go with the flow, it bottomed out to a level I could manage with. And trying different treatments made me feel like I was not totally helpless and always gave me hope. The important thing is to educate your family and friends, give them stuff to read about it, and not feel unable to tell them when you are having a bad day or a wobble in general.

Someone earlier said about keeping a diary of symptoms and thats a really good idea. I kept forgetting to do mine, so get someone else to do it. It doesn't have to be an epic, just a few notes on what was bad that day. It will be a real halp if you have to see a tribunal.

I cant think of anything more at the moment, but I really wish you well, and you are not alone here.

umngane

19-06-2006, 6:33 PM

I’ve posted this message elsewhere so apologies to those who have already read this post –

-------------------------

It is well worth being tested for Lyme disease or other tick-borne infections. Lyme disease is notoriously difficult to diagnose and is a great mimicker of other illnesses. Many ME and Fibromyalgia patients have been misdiagnosed and in fact are suffering from Lyme disease.

Be aware that if you have had a negative Lyme disease test this, in NO way, is a conclusive result (most of the antibody tests are notoriously unreliable , producing false-negative results, few doctors in the UK are aware of this, or the prevalence of Lyme disease for that matter).

The best way to get conclusive proof of a Lyme disease infection is to have your blood screened under the microscope by a specialist. I know of only one ME specialist in the UK that provides darkfield microscopy screening. He sends out blood slide kits to those who are unable to come to his clinic (in Bolton) and is willing to have telephone consultations if need be. If you would like his details feel free to e-mail me.

I was (mis)diagnosed with ME 5 years ago. I continued to develop a myriad of symptoms over the years. Recently, I had my blood screened under a microscope by this ME specialist. He found Borrelia spirochetes in my blood - Lyme disease! He also tested my blood for other bacterial infections (one of which was also positive for Rickettsia).

After all these years of being told that I had ME and nothing could be done for me, I am now being treated for the real cause of my ill health - Lyme disease (and Rickettsia). I have a long course of antibiotics ahead (at least 18 months) but am starting to see a slow improvement. My arthritic and lethargic cat was also screened and he too has a Lyme disease infection (he is improving on antibiotics everyday)!

I highly recommend having the blood slide examination. Even if my test had been negative it would have been worth it just to be able to conclusively rule Lyme disease out.

This ME specialist in Bolton is very thorough and will also test your mitochondria function (very significant in ME), alongside other necessary blood tests.

-------------------
Information on Lyme disease –

The EuroLyme Yahoo group is a good resource and support network.

http://www.lymediseaseaction.org.uk/lyme.htm

http://www.immunesupport.com/library/print.cfm?ID=6743

Huge range of possible symptoms - http://www.lymediseaseaction.org.uk/symptoms.php

http://www.theoneclickgroup.co.uk/documents/Borreliosis/

---------------------------------

Good luck with everything!!

NB. Please note that I am in no way affiliated with this specialist and am not a doctor. I am just speaking from personal experience and hope that it may help someone else.

P.S I also had glandular fever (11 years ago) and recovered 100%. It’s worth looking into glandular fever/epstein barr virus as a cause but don’t rule out other illnesses/infections either.