M.E. or chronic fatigue syndrome info plz

Ted_Hutchinson

The article states Now it is becoming clear these patients have "a disturbance in their body's natural way of dealing with infection," says Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland.
These 3 papers 1 ... 2 ....3
all show the importance of Vitamin d3 in it's ability to assist with fighting infection.
It doesn't surprise me at all that the syptoms of ME/CFS overlap with those of Vitamin d 3 insufficiency. Getting out into the sunshine as sunbathing for as long as possible WITHOUT EVER BURNING will do you more good than harm and may very well improve your pain/energy/mood scenario.

hjb123

Ted_Hutchinson wrote:

Getting out into the sunshine as sunbathing for as long as possible WITHOUT EVER BURNING will do you more good than harm and may very well improve your pain/energy/mood scenario.

I could agree on that point but the thing is I cannot stand up to being in the sun, I am heat and light sensitive and suffer from headaches and pressure behind the eyes when it is hot or the sun is bright!

I realise many ME/CFS sufferers actually feel better for the warmer weather - but I never seem to be like anyone else - Im one of my own!!

Ted_Hutchinson

hjb123 wrote:

I cannot stand up to being in the sun, I am heat and light sensitive and suffer from headaches and pressure behind the eyes when it is hot or the sun is bright!

So your chance of being vit d3 insufficient or less than optimal are fairly high.
For information and not as advice I suggest you read People with undetermined muscle/bone pain tend to be severely vitamin D deficient
Top 10 Vitamin D Myths
Vitamin D Deficiency Syndrome
(4000 IU) per day improves biochemical responses and the wellbeing of patients
we are studying vitamin D supplementation of up to 4000 IU of vitamin D3 per day during pregnancy
Why the optimal requirement for Vitamin D3 is probably much higher than what is officially recommended for adults

If you ordered the 5000iu tablets from BIO-TECH Pharmacal Inc. and took 6 a week rather than one every day, this would be more or less the equivalent of 4000iu daily. If you wanted to match the depression research you could alternate with 6 tabs one week followed by 5 the next. Vitamin d3 does not have interactions with other medications you may be taking see Check Interactions - DrugDigest
Edit: I should also have made the point that it is the effect of the sun shining directly on your skin that creates Vitamin d3 cholecalciferol. There is nothing to prevent you from wearing sunglasses while sunbathing. This calculator allows you to find out the earliest and latest times of day (providing it's not cloudy) when this can happen. By going out earlier or later the heat would be far less than at midday. You may need to spend longer outside but as it's free and your body can deal with any surplus it would be better than staying indoors and cheaper than the tablets.

umngane

Have you ever been 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 and 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 then went on to develop a myriad of symptoms. I recently 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 positive - 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.

He is very thorough and will also test your mitochondria function, 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

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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.

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 are aware of this, or the significant prevalence of Lyme disease in the UK 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/do...s/Borreliosis/

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Good luck to everyone! One day you WILL find the cause of your ill health and the cure(I just hope that it happens as soon as possible for you)!

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.

donnydiva

Hi

Can anyone who has suffered from chronic fatigue, please tell me of anything they have found which has helped them?

I have heard that Royal Jelly can be good.

What I have is like, what could be best be described as sleeping sickness. It comes over me in a wave, and I just have to lie down and/or sleep.

I have been to the doctors several times, and had the routine blood tests, but because they come back normal they dont suggest anything.

It stops me doing things I want to do due to lack of energy, and I have to pace myself otherwise if I overdo it I pay for it the next day.

Would welcome any feedback from others who have had, or have this problem.

Thanks

Eric_Pisch

loads of things can cause this, suprised the docs not looking more into it

eating crap food

lack of exercise, low physical condition

allergies / intolerances

its a very common symptom of gluten intolerance

msg's are another common cause

Mojisola

In addition to Eric's suggestions -

How well do you sleep at night? Has the GP ruled out sleep apnoea?

Organic12

donnydiva wrote: »

I have been to the doctors several times, and had the routine blood tests, but because they come back normal they dont suggest anything.

Which tests? Iron, thyroid function? Any chance of seeing another doctor, even at the same practice for a second opinion? What's normal for a sample population may not be normal for you as an individual.

Some, by no means all, doctors need a bit of shove to start looking at their patients rather than purely test results.

clairibel

Hiya, unfortunatley with CFS/ME everyones symptons are so varying and docs really don't have a clue....i've had ME for nearly 8 years now and it took 5 years of that to be diagnosed.

I have tried lots of stuff and no one thing works for me and i basically just live with it best i can, some days are better than others.

Have a look at this website http://www.foggyfriends.org/

Loads of info, help and support from ME/CFS sufferers, its been very helpful to me in the past.

Take care.