Where to start?

[thefreeprisoner]

Hello everybody,

I'm new to this forum and totally awed by such an intelligent, passionate community of people.

I'm having an ME relapse - the last one was 6 years ago, and I thought I'd recovered from it completely, so it was a bit of a shock when I suddenly got symptoms again.

6 years on, there's a TON of new stuff out there - drugs, options for treatment, research and so on. I feel a bit overwhelmed and I'm confused about where to start.

I'm intrigued by the research finding that there might be 8 different subsets of ME, each requiring different treatment (possibly?) I'm wondering where I fit in to that. This bout started with a sore throat and flu-like symptoms. I lost the sore throat after a few days but the dizziness, clumsiness, brain fog, hot and cold, muscle aches, fatigue oh and the WEAKNESS have just kept going. I've always had a mild case of what I suspect is IBS which comes and goes. I'm allergic to loads of things - mould, animal fur and feathers, dust, pollen etc etc

Various friends have recommended all these different things:

• Dark chocolate
• Low Dose Naltrexone
• Elimination diet
• Pacing myself
• Vitamin supplements
• Acupuncture
• Chinese herbal medicine
• Pro-biotic treatments

I guess I can rule out Acupuncture and Chinese herbal medicine to start with because at present I don't have enough energy to go out for regular treatments.

What does everybody think? What would you do first?

Rachel xx

 

[_Kim_]

Hi Rachel,

I asked a similar question some time ago and the members here told me that the #1 thing I needed to do was to rest. Don't push. Do less than what I think I can do. They've been right.

As for your other list, all of those approaches are worth trying.

Since you've had a touch of IBS in the past, eliminating gluten and possibly cassein from your diet might be a simple experiment to try.

And though Dark Choc. hasn't cured me, it seems to help a bit with the cognitive dysfunction and fatigue.

 

[thefreeprisoner]

Hi Kim,

Thanks for being so friendly and helpful! I love your avatar - are you an illustrator or were you fortunate enough to have an artist draw such a beautiful portrait of you?

Alas I seem to have failed at the first hurdle! I had to drag myself out of bed to attend an important business meeting yesterday to win a big contract for my business (I run a webdev company and have a handful of staff, whose livelihoods depend on me, eek). I feel exhausted now.

It really is true that I can do less than I think I can do. I keep pushing myself too hard and then crashing.

Right, once I've recovered from this I think an elimination diet is worth trying. It would be helpful with the weight thing because I've put on half a stone due to lack of exercise...

Thanks again
Rachel xx

 

[_Kim_]

Hi Kim,

Thanks for being so friendly and helpful! I love your avatar - are you an illustrator or were you fortunate enough to have an artist draw such a beautiful portrait of you?

Alas I seem to have failed at the first hurdle! I had to drag myself out of bed to attend an important business meeting yesterday to win a big contract for my business (I run a webdev company and have a handful of staff, whose livelihoods depend on me, eek). I feel exhausted now.

It really is true that I can do less than I think I can do. I keep pushing myself too hard and then crashing.

Right, once I've recovered from this I think an elimination diet is worth trying. It would be helpful with the weight thing because I've put on half a stone due to lack of exercise...

Thanks again
Rachel xx

Hi Rachel,

My avatar is the work of Egon Schiele, an early 20th century Austrian painter. His work was considered controversial/pornographic and his life story is not without scandal. The avatar painting is one of his more tame contributions. It is a drawing of his wife, Edith.

It's good to hear that you are still able to work, but disheartening that it has become so exhausting. I run my own business as well and am well aware of the advantages of being my own boss. But there's also the pressure. No one else is going to do blah blah blah... We have to.

When you are well rested, trying a week of eating gluten-free or cassein-free would be a good experiment. When I first eliminated gluten, I lost a good amount of weight.

I've wanted to ask one of our UK members this. What is a stone or half a stone? Is it an exact measurement, like a kilo? Or is it just an expression?

 

[coxy]

a stone is 14lbs, hope that helps

 

[thefreeprisoner]

Kim:

Oh, Schiele, of course! You'd wouldn't know that I spent three years at art college, would you??

It is pretty stressful, and I know that I need to avoid stress in order to get better without any kind of treatment. I then get stressed about being stressed... aghh...

Rachel xx

 

[_Kim_]

Kim:

Oh, Schiele, of course! You'd wouldn't know that I spent three years at art college, would you??

It is pretty stressful, and I know that I need to avoid stress in order to get better without any kind of treatment. I then get stressed about being stressed... aghh...

Rachel xx

Then you know far more about Schiele than I do. I am art-for-dummies reader.

So, you have realized that reducing stress is a big component in getting well. What tools can you employ that would mitigate some of the stressors? Meditation? Biofeedback? Massage? Prayer? Or maybe just adopting a regiment of imposed silliness throughout the day? I dunno - there are so many possible ways to turn down the volume on the stress.

If you do nothing else, please try to be gentle with yourself. You've figured out how to put this thing into remission before. I trust that you will again.

 

[thefreeprisoner]

A regimen of imposed silliness! Now that I like.
I saw this post on a CFS blog along those lines, which I thought was great, even if the recommendations could do with a dose of imagination: Do you play?

I am sure prayer and meditation will help... I find them very difficult to do, though, and get frustrated at myself when I can't get the motivation.
I have started a blog as a form of therapy, which does exercise my creativity to a certain extent: The Free Prisoner.

I am following the XMRV forum with interest, though, and can't help but feel a tingle of excitement that maybe there is some way to get out of this without it being so HARD and SLOW...

 

[heapsreal]

i dont think you can go wrong by taking high dose antioxidants and fish oil, things for general health can help. One of my biggest symptoms was bad sleep. With this one, sometimes the only alternative is medication and rotate between a few meds so you dont become tolerant to them. Can start off with natural stuff and see how u go. I know i would be alot worse without treating sleep. I have had some success with antivirals as my cfs came on after chickenpox and ebv infection, so its worth looking into.
Cheers!!

 

[Sunday]

Hello freeprisoner, I think Kim's advice is excellent. Something that might help you and which you don't need to go out for is Fredd's active B12 protocol (Kim, you're doing this too, right?) It does require a little study, but if you read the first 3 pages of the thread you should get the gist. (When I first approached it in desperate brainfog, it took me 2 days to read the 27 pages it then was.) Basically, Freddd's premise is that B12 deficiency is at the bottom of neurological problems, including ours, and that the neuro problems underlie a lot of the other stuff, such as gut problems, PEM, and so on. You can order the necessary supplements through iherb.com

As I wrote that last sentence I felt it was getting worse and worse, so if anyone wants to help me out here, please do.

The big thing I should warn you about with this protocol is that starting up the active B12s (different than the kind you most often see in supplements) does kick up a lot of symptoms; it's sort of like making yourself worse to make yourself better. If that sounds un-doable, you might check out RichvanK's writeups on his Simplified Treatment protocol; some of the theory is similar, but he uses different types of B12 and takes the approach of minimizing startup symptoms and maximizing dr. supervision. This means the healing process may take longer, but it might be more workable since you have to work. Freddd's B12 protocol and acupuncture and Chinese herbs have been the best things for me so far - well, that and going to a hot springs, though these days I don't have the energy to drive there, I've been able to go with friends.

In the meantime, is there any way you can delegate some of what you do? Train someone? Are there some things that don't absolutely have to happen on the time schedule you have in mind? Can you arrange to have more of your day from home, where you can lie down as you phone and email and skype? Arrange to have more of your day involve lying down instead of sitting? Eat more protein? Cut out unnecessary actions (like: maybe you don't need to be the one to jump up and get something; maybe you don't have to run that errand; maybe you don't have to do everything that needs doing around the house and yard, a little benign neglect makes a place cozy...) I seem to be echoing Kim, don't I? But I think she's right. Since you've been through this before, I'm sure you know the drill, but it seems we all need to be reminded.

It must be so discouraging to have this come back on you, after being healthy for so long. Best wishes for finding your way back there.

 

[_Kim_]

Hello freeprisoner, I think Kim's advice is excellent. Something that might help you and which you don't need to go out for is Fredd's active B12 protocol (Kim, you're doing this too, right?) It does require a little study, but if you read the first 3 pages of the thread you should get the gist. (When I first approached it in desperate brainfog, it took me 2 days to read the 27 pages it then was.) Basically, Freddd's premise is that B12 deficiency is at the bottom of neurological problems, including ours, and that the neuro problems underlie a lot of the other stuff, such as gut problems, PEM, and so on. You can order the necessary supplements through iherb.com

As I wrote that last sentence I felt it was getting worse and worse, so if anyone wants to help me out here, please do.

Sounds good to me Sunday! The B12 protocol is working for me and I had NO adverse startup effects, only improvements. Rachel might not have a bad go of it either. She's not been sick for all that long (relatively) and the B12 deficiency likely isn't as severe as it is for others who are doing the protocol.

In the meantime, is there any way you can delegate some of what you do? Train someone? Are there some things that don't absolutely have to happen on the time schedule you have in mind? Can you arrange to have more of your day from home, where you can lie down as you phone and email and skype? Arrange to have more of your day involve lying down instead of sitting? Eat more protein? Cut out unnecessary actions (like: maybe you don't need to be the one to jump up and get something; maybe you don't have to run that errand; maybe you don't have to do everything that needs doing around the house and yard, a little benign neglect makes a place cozy...) I seem to be echoing Kim, don't I? But I think she's right. Since you've been through this before, I'm sure you know the drill, but it seems we all need to be reminded.

No, Sunday, I didn't say this anywhere near as clearly as you did. Delegate. :sofa: Work from home. :sofa: Say no to yardwork. :sofa: More protein, less carbs. :sofa:

And play!!

Rachel, I read that play article - I know that you can be more creative than that author about play. I just read your blog It is so wonderful that you have such love and support around you. I will add that you need to keep asking for help from those that care. Most of us don't have that kind of support system. You are blessed.

 

[Tony]

Hi Free,

If you feel IBS is a part of the problem, I'm 100% with Kim's suggestion of trialing a non gluten, non casein diet. They're similar molecules and potentially nasty little blighters. Some folk get good results from this alone. I'm also a B12 freak, but I inject hydroxy B12 and it's my best mate... Thanks to Dr Cheney, Rich VanK and Freddd and others many people have heard the word about the benefits of B12, mostly methyl or hydroxy versions, sublingual or injected. You may like to read this as well which explains some more of what I'm blathering about.
Good luck to you in whatever you decide to do.

 

[thefreeprisoner]

Thanks and thanks again everybody.

I think I'll read the B12 stuff when I'm feeling a bit less fogged. I'm pretty sure I don't have any vitamin deficiencies as I ate really quite healthily before I got ME. (Most days I got more than my 5 a day fruit and veg, sometimes as much as 10 (!) and I don't eat much bread, cake, biscuits or fatty food, with an exception for Ben and Jerry's and chocolate, eeep.)

I figure there must be something more to the B12 stuff than I'm thinking of, so I'll need to clear some brain fog before I read the research so I can take it all in. I'm going to take things one at a time, starting with diet, and I'll be keeping a diary, so I know which thing is the one that works.

You guys are great. Thanks for your compliments, Kim, made me blush...

Rachel xx

 

[Jenny]

Hi Rachel

Welcome! I'm in London too, North London.

Just to say I would also recommend iherb for buying supplements. Even with postage and packing most are cheaper than buying in the UK. You have to take care that your order doesn't go over 18 though, or you have to pay import tax, which can be quite expensive.

Jenny

 

[Frank]

thefreeprisoner here's what i would do in your situation:

-immediatly start on a diet with no or very little diary, sugar and gluten + other allergens like some fruits, MSG, aspartame,... (maybe take a food intollerance blood test)
-start pacing
-repair your gut using a total supplement, that has to have at least l-glutamine and zinc in it. The more the gut gets repaired the less you'll react to stuff.
-use of betaine hydrochloride and digestive enzymes for better digestion if that's an issue (if you have fatty stooles or undigested stuff)
-Probiotics are a good idea too, but the good ones are expensive..

I tried TCM and accupuncture with little succes. The LDN i'm gonna try in a few months as i'm on a list of a private clinic that prescribes it.

good luck

 

[Kathi]

Follow the wise advice of all that have commented before............but do not push yourself. Study and research to see what your body is telling that you may need. This is a serious illness and you can turn the tide either way. Pushing will only tip the scale in a negative direction. If only someone would have told me that. I had a fairly good immune system that was able to fight back each time I got in serious trouble. Unfortunately I didn't know to quit for awhile this last time. As you age, I believe this illness is more difficult to battle. Perhaps the DNA has become more corrupted as the result of the XMRV virus. Listen to your body!!! ABOVE ALL DO NOT PUSH WHEN YOUR BODY SAYS TO STOP!!! This is especially important with gradual onset.

 

[susan]

All of the advice above is great, definitely on the right track. I did the Gupta program www.cfsrecovery.com and whilst it has not cured me, it has educated me in the matter of calming the body...did not realize I was shallow breathing. Have really concentrated on that and and meditation and it has paid off big time. It is the constant pumping of adrenaline that wears us out. For 21 years I have fought this beast and I reckon I have spent into the 10s of thousands.

Now I have just done the full range of tests (stool urine )at Metametrex in the USA and it told me what my body is lacking and what I DONT need. All the useless stuff I have tried over the yrs has been to no avail as the bodys metabolism was out of sync, like a car running on 3 tyres, and a leaking radiator etc. Did not matter how much gas I put into it, it did not matter.....it did not make it work better. The test revealed the disgusting condition of the gut where the neurotransmitters and immune system is made. The b12 protocol is a good one but I have enough,...I lacked the folic acid to turn it on.. I would not have known that only for the tests.

 

[thefreeprisoner]

A further huge thank you to you all.

I'm going to work my way down the list of suggestions in as scientific (!?) a method I can muster.
Today I have started an elimination diet, and I'm monitoring my progress by tracking my symptoms every day in a diary which I will soon post to a chart.
Expecting my symptoms to get worse before they get better while on this diet though...

If this doesn't work (or actually, even if it does but only a tad) then B12 is definitely next up.

While doing that, I am trying to gradually increase the activity that I do each day. I'm quite fortunate (some would say) in that my body gives me the shakes or hot flushes when I'm overdoing it, so I know when I've bust my limits (I think). So I'm keeping track of that too.

Will let you know how I get on...

Thanks again
Rachel xx