M.E, depression + glandular fever link?

Cat72

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

Cat72 wrote:

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_2

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

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

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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.

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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/

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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.