Monday, March 15, 2010

Decisions decisions

Hmmm … How do you decide what treatment path to go down?? By all accounts there is a better recovery rate if you start treatment early, but what treatment. I’d like to be one of those people who is really content to just go along with whatever their Dr suggested. I am convinced that My Dr knows his stuff and that he is an expert in CFS in my area but …. I’m more inquisitive than to just go with the flow.

I have spoken to quite a few other CFS’s now and they have all had varying degrees of success with different things. Florine F, Valtrex – Valacyclovir, D-Robose, LDN, Amino acids, Vitamin B, Vitamin C, Adderall, Ritalin, NLP CBT Gupta, eating no red meat or sugar etc, graded exercise, OMG!!!!!! How do you know???

People have had success with all of these things but some people do nothing and still have recovery. All I know for sure is that I want some kind of functionality to return.

After having a really low few days I was lucky enough to have been re-motivated by people around me including some of the visitors to this blog (thanks for the artist links Cusp) ….. I am going to spend a few days thinking and I am going to plan a project that I can work on in little bits (as suggested by Jo) and I am going to pick my sorry arse up!!! And DO SOMETHING!!! Hahaha

If anyone has anything to say about treatments I’d love to hear it …..


  1. My philosophy on this is resting and pacing, good nutritional support and very gentle exercise within your energy envelope to let your body heal itself. But that is what suits me. CFS is very specific to the person and they think there are a number of subsets of the condition. So it may be a case of trial and error. Of course, eliminating the possibility of any of the nasties like Lyme is very important. (something that still has not happened in my case).

    I'd caution against trying lots of different drug treatments until you know what your base line is. That way you'll know if they are helping or not. Your body has to process drugs and some of them are very stressful for your liver. But again, that's my own opinion.

    Lastly I'd say, keep a symptom diary for a while, giving a number value to things like pain and mood. So you can keep track of improvements and set backs. Although focussing too much on symptoms can be detrimental. So do it for a month or so, and then again six months later. If you can handle excel spreadsheets, use that to graph progress. I've got an example I can send you if you email me.

    All the best with it. Get all the info you can before you embark on a path. ((()))

  2. Thanks Jo, that all sounds like good advice!! I'm pretty good with spread sheets and being organised etc so I should be right, it's more just working out what to do ... but you have pointed me in the right direction I think :)

  3. Hi Lee

    Yes, I'd agree absolutely with everything Jo said. I found an activity diary really useful early on (4 years ago) because it helped me pinpoint times when I THOUGHT I was resting but actually wasn't!! I was really not pacing at all properly, and I think that this has made my illness last longer than it might have done otherwise.

    I'd also steer clear of as many drugs as you can. I was put on anti-depressants which were really hard to come off later, and even the drugs I took to help me sleep are no better than the herbal stuff I take now. I still have to take far too many pain-killers than I'd like, but that's life at the mo. And like Jo says, it would depend on your own baseline.

    Just try to keep your body as healthy and de-toxed as you can. Don't know if you've heard of Dr Sarah Myhill? She has loads of advice on this website . .
    in the "fatigue" section. There is also a downloadable book (free) which is packed full of useful stuff.

    I've been following a strict diet for the past year or so (no dairy - I think I was always intolerant anyway, but ME made it worse; no wheat - but I think this is maybe because whilst I'm ill my gut can't cope with it; and no sugar ( I use xylitol) - it helps keep candida and brain-fog away for me).

    As for Gupta, I'm not wanting to do an on-line advert or anything, but it seems to be moving me in a very good direction at the moment. It feels like the final piece of the jig-saw for me, but then as Jo says, the illness is a different experience for everyone. I found this blog by Cort Johnson on Gupta which I found quite interesting, and might give you a bit more info:

    Hope you find the right path to travel - you're doing the right thing in taking the time to try to figure out where you need to go and the best way to get there . . .

    Take care,
    Michelle x

  4. Hi there,

    I'd agree very much with the folks above about resting and being cautious with drugs (which you probably already are!).

    One thing that I think is probably safe to add into your treatments in small doses at least is Virgin Coconut Oil. It doesn't kill friendly bacteria or hurt your liver, supposedly, so it's less risky than most other things. It's also really inexpensive, and tastes good if you get the full flavour kind. It has a lot of food value, so it can decrease the amount of other food you need to eat in a day, especially starches. There's a variety of studies on how it can kill bacteria and viruses, and seems to have a lot of other health benefits outside CFS. My caution is that since it has anti-bacterial properties, it can cause a die-off of bad bacteria in your system, which can make you feel worse until you get rid of them. So I'd recommend small amounts at first if you do decide to take it. Anyway, that's what I'm working with right now...

    Thanks for your posts!


  5. Thanks Michelle for your take on things and also for the links I will definatly check those out. You also mentioned that you weren't actually resting when you thought you were ... I'm sure I am having that problem. I have such an active mind so I find it hard to relax and rest ... guess I need to more aware of that, thanks for pointing it out to me!

    Thanks D for the tip on Virgin Coconut Oil, I will do a bit of googling about it and see where it leads :) I do have a bacterial overgrowth problem which I am currently on anti biotics for but perhaps your suggestion would be a way to stop it returning once I finish the meds....

  6. Hi Lee,

    Great question! It's difficult to know what treatment path to start out with. I agree with all of the above advice.

    I think it's important to figure out what infections are present such as EBV, HHV6, lyme, etc...

    Also, I got my hormones tested which showed I'm deficient in everything.

    I've tried many, many treatments from the Gupta program (which sent me into a crash) to Valcyte. I'm glad I tried everything I did. The things that were most beneficial to me have been treating the Postural Orthostatic Tachycardia Syndrome and antivirals (Including Valcyte).

    I'm trying to figure out my next treatment path also.

    I've learned that it takes awhile to figure out what really works and what doesn't. I'm still trying to figure that one out.

    I'm also on the Simplified Methylation Protocol as outline by Rich VanK and I've found that to be a helpful protocol that works in the background. My body isn't able to eliminate toxins, infections, molds etc.. on its own and this helps with that.

    There's a lot to learn but fixing your gut will help...

  7. Jo's advice is a very good place to start: pacing, regular rest periods, good nutrition and very gentle exercise (nothing aerobic or sustained for very long!), if your body tolerates it. I've had a love/hate relationship with exercise. Sometimes I try too much and pay for it, but if I neglect it completely, my body just hurts.

    My approach to supplementing has been to first do no wrong. I start with basic supplements that are good for you whether you have CFS or not, like a good multi, fish oil, probiotics, and calcium/magnesium/zinc combo at night. I've then experimented with supplements that have been shown to help CFS by taking them for about six weeks, then going off for a few weeks to see if I notice any difference. Like others have said, everyone is different and responds differently.

    Don't ignore alternative therapies, which are more like supplemental therapies. I love therapeutic massage, and I really want to try acupuncture.

    I created a website (as a coping technique) that you may find helpful. I personally think the Lifestyle section is pretty good (*preen*). I also have information on different treatments. It's at