ChronicallyMe

I’ve thought a few times it might be interesting or of interest to share what suppliments I take.

I’ve recently started a couple of new suppliments after recommendation by another CFS sufferer.  Although it’s still early days and I am sceptical, when I look back over the time I have been taking this it does seem to coincide with much better cogntive function.

However!  I am blogging with a note of caution because I am still not convinced. 

Also one of the things that drove me mad when I was first diagnosed was surfing web sites and finding sufferers recommending wonder suppliments or treatments - but who were still very incapacitated by this illness.

I used to think - what use it that?  How wonderful is product x or suppliment y when this person still is unable to do “normal” things?

I kind of understand now that just like the bad or better days you have with CFS/ME are often just tiny measures apart - I think so is the difference a suppliment might make.

I settled on a routine dose of immune specific multi-vitamin, zinc, magnesium, vitamin C and B12 a few months after my diagnosis.  I did quite a bit of reading and stopped taking others which I decided not to pursue for now.  It’s stacks up to quite a little monthly bill just for suppliments and it’s a lot of tablets to take. I found Dr Anne MacIntyre’s book “M.E.: Chronic Fatigue Syndrome - A Practical Guide” very helpful deciding on suppliments.

(Before you say - I know I should be trying to get these nutrients through my food but food and me have a complex relationship - so you just have to accept that for now it’s tablets for me).

I used to know why I took each of these - forgive me as today it escapes my mind!  I know my mulit-vitamin (Vitabiotics Immunance) has lots of brill things for my immune system.  Low levels of B12 in the body can cause fatigue so extra doesn’t hurt at all.  Vit C is good for immune system too I think. And I get them mixed up but I think Zinc is good to help you absorb nutrients properly and magensium is good for nausea and erm, other things. Somewhere I have my dosages written down if anyone is interested.

I went through a phase of thinking that they didn’t seem to be making much difference - I was still very ill.  So I stopped taking them.

Within a couple of weeks I had picked up a viral infection even though I had not left the house.  No-one else I came into contact with even noticed a viral infection in themselves - yet it left me shattered and very ill for over two months.

It was the first time I had anything like that since taking the suppliments.  Needless to say now I take them every day again!

So it seems to me at least that they are useful.  They might not make me well enough to zip around the house or go out on my own - but they certainly have a role to play in keeping my body as well as possible - using my energy to fight CFS/ME and not other infections.  It might be tiny compared to what I would have demanded before CFS/ME - but small mercies are welcome now.

I’ve been taking a product called AllicinMax (in the UK) or Allimax (in the rest of the world) which is 100% allicin extracted in a special process from garlic.  Allicin is the active part of garlic and when taken as garlic or garlic tablets it can be destroyed in the gut very easily.  The makers of AllicinMax/Allimax say that their allicin is stable and so you get the full benefits of it.

Briefly, allicin is supposed to be like a natural antibiotic except that it kills bacteria and viruses.  Each tablet contains 180mg of allicin (equalivalent to 30 bulbs of garlic!).  The theory is that CFS/ME has some basis in chronic infection.  That or bodies are riddled with chronic infection which are not killed by a routine course of anti-biotics.  The Marshall and Wheldon protocols are also based on treating chronic infection.  I have even heard the idea of “stealth infection” deep in our cells that normal medication cannot “see”.

Whether this is all true or not I do now know.  But I read on a forum about a lady who had been trying it and found (by accident really) that it seemed to be making her better - slowly but steadily better. 

I don’t really know why I decided to try it.  But it seemed not to expensive to give it a little go, it was simple and I didn’t need to believe in it - if it works it would just do it’s stuff.

I started taking one tablet a day in mid August 2007.  I have gradually increased the dose and am now up to 5 tablets a day.

I was not convinced it was having any effect.  I took 1, then 2 tablets through my viral infection and it didn’t seem to help with that.  So I was (am?) sceptical.

But looking back to August I see that now my brain fog is not as bad as it was.  I am able to concentrate more and get mixed up with words less.  I still suffer with bad brain fog but for less time if that makes sense.

Going out this week and feeling not wiped out completely - is making me wonder if the AllicinMax is indeed helping.  The lady who reported an improvement first said she started with better concentration and then slowly improved physically too.  Maybe my little extra battery space is due to this? Hmmm …

I’m not telling everyone to rush out and try it because I honestly don’t know if it worth it.  It could be just time and/or rest and/or pacing and/or one of those things that I have found small improvements.

If you do decide you are interested read up some more - a lot of people on my forum reported what are called Herx reactions.  So as the Allimax kills the bacteria you get a “die off” which is I suppose a bit toxic in your body.  So it can cause headaches and fatigue and basically make you feel worse for a little bit.  When the bad stuff stops them you know you can look to increase the dose.  This is why you don’t just start with a high dose of this suppliment - because the amount of die off would be too toxic for our CFS/ME bodies to handle.  I have increased my dose every two to three weeks - now increasing monthly as the dose gets bigger.  I personally haven’t noticed any such reactions but my symptoms are variable anyway so I might just be ignorant!

Oh very important - if you are in the UK make sure you buy AllicinMax (available from Boots and QuickVit) and not Allimax.  Allimax is a disupted name under copyright and the Allimax being sold in the UK do not contain pure allicin.  The company have renamed the pure allicin tablets to AllicinMax in the UK.  Everywhere else it remains as Allimix, but not in the UK.

Here’s a link to a web site that the lady who first told us on the forum about AllicinMax has set up www.cfs-allicin.com  It says a bit more than I have here and the community there would be a good place to ask questions about AllicinMax, the research and so forth.

Well anyway - so I have been on AllicinMax for around 3 months.  A week ago I also started taking N-Acetyl Cystein (NAC) 600mg an anti-oxidant to help clear up after the allicin. 

I also started taking Astragalus again which is supposed to be good for immune system.  I took this last summer when I was diagnosed with Glandular Fever and my progress was better then.  Whether it was the astragulus or because I am not more ill than then … I do not know!

I’m sorry this is a confusing post (see I said my brain fog was better not cured!).  I wanted to share what seems to be helping me but don’t want to sound like one of those people who says “this WILL make you feel better!!” because I really don’t know.  I’m not claiming a miracle or even a cure.  Just telling you what’s going on for me.

I just wrote a response to a question on an ME forum about sick notes - but thought as it had my entire knowledge of sick notes I’d post it here too!  I’ve even added some additional bits.

My employer (and I think it’s a statutory thing so everyone is the same - but don’t quote me) allows you to “self certificate” for the first 8 days of sickness.  This includes weekend days during that period of sickness.  After this time if you are still ill you require a sick note from your GP.

Sick notes are a certificates whereby the doctor formally states that you should refrain from work and for how long as well the diagnosis of the disorder causing your abscence from work.  I seem to remember there’s a couple of kinds of notes but generally you get issued a Form Med 3.  At least that’s what it says at the bottom of most of my notes

On the back of the note you need to complete some details (name, address, national insurance number, works/employee number if applicable).

You can continue to have sick notes issued by your doctor for as long as your doctor agrees you should refrain from work. So in that sense you just keep asking for a new sick note when the current one runs out.

Your GP can’t put a future date on the sick note, but they can give you a backdated sick note. Make sure the sick notes cover you continously to avoid problems further down the line.

If you can keep a copy of the note before you send it to your employer/benefits office (I use a scanner and keep copies of my electronically on my computer as photocopy is not practical for me!).

If there is a gap in the sick notes (between the end of the last one and the start of the new one) contact your GP surgery and explain you need a note that covers the gap.

Often GP’s are usually happy to write sick notes without seeing you where the condition is “long term”.  Ring your surgery and ask about getting a repeat without an appointment (unless of course there’s things you want to discuss at the same time).  Some doctors may insist on seeing you.  As we know not all doctors are sympathetic about ME/CFS - if you have problems getting a note I can only think to try and see another doctor.

My GP surgery will also let you request a phone call from a doctor where you can have a quick discussion (ie. “there’s no change doc”) and they’ll look at your records and do the note for you there and then.

I started off with a 2 week note I think and then the GP suggested going for a month, then 2 months. If you realistically and honestly think it will be a while before you are well enough to work again then it makes it easier for your employer to plan knowing it’s going to be a bit more than 2 weeks. Plus if you feel better before the note is up you can see/speak to your GP and they will do you a return to work note which cancels it out.

(Speaking from personal experience I found it very hard to accept being signed off for a month and then for 2 months.  I’ve always been very conscientious and it was difficult to come to terms with the prospect of recovery taking so long.  But in the end it was useful both for starting to come to terms with the reality of my situation and for setting realistic expectations for my employer and in particular my colleagues.)

Sometimes a doctor will write an open note and sometimes they write the date you can return to work. If it’s an open note (eg. refrain from work for 2 weeks) then you must get a return to work note before you go back to work. If you’re not sure if you need one or not ring your surgery and ask.

A GP can write a note for a few days or for many months. I am currently having 3 month notes as I find it a useful excuse/reminder to see my GP every 3 months and have a little review of where things are at.

You will need to send the original sick note to your employer, until such time as they stop paying you and you have to make a benefits claim - in which case you need to send a copy to your employer and the original goes to the benefits people (I haven’t made a benefits claim yet so I don’t know about that bit). Hopefully it won’t come to that!

As for how long you can continue to be off work sick with a doctors note before losing money and so forth this varies from employer to employer.

Some will continue to pay full wages for many months while you are off sick. This is what they call an “occupational sick pay” scheme. Your employer voluntarily pays  your full wages. My employer gives 6 months full pay, then 6 months half pay , before going to nothing (and leaving me needing to claim benefits). They are public sector and it’s a good deal.  Part of my sick pay has been made up with Statutory Sick Pay but it all gets a bit complicated so don’task me to explain!

Other employers are not as good as mine! They will only pay Statutory Sick Pay so you will see a change in your income/wages almost immediately. Statutory Sick Pay (SSP) isn’t a lot (£72.55 as I type) - but it’s better than nothing!  SSP is paid by your employer for up to 28 weeks.

You’ll need to check your employers policy to see what they offer - give your HR people a ring or email if you’re unsure. There may also be rules about eligibility for Occupational Sick Pay (like how long you have worked there etc).

There’s also rules about eligibility for SSP.

More information about Statutory Sick Pay (SSP) can be found at:

http://www.dwp.gov.uk/lifeevent/benefits/statutory_sick_pay.asp 

Sick pay makes my head spin - but this blog post is about sick notes after all!
I hope some of this is useful to others.

So far I’ve had 18 months of experience with sick notes and signing back on to work and off again! It can be quite daunting when first have to deal with it.

Finally here’s what a sick note looks like  - with some blurring to protect the innocent.  It’s not that exciting - they could use a nice colourful border to cheer us sickies up.

And, yes, I know my sick note says “Post Viral Fatigue” but lets leave that for another blog post and think calm thoughts.

Example of a Sick Note:

Example of the Rear of Sick Note: