Saturday, April 16, 2011

One Small Step .....

Finally after being in a really bad place for many many months I feel like I have turned a corner! I think this is a good opportunity to do a review of my current symptoms and medications …. So … no emotions in this post hahaha!

I recently started taking Propanolol for my POTS/OI problem. This had become one of my most disabling symptoms and after trying several things with no success I was beginning to feel doomed. My POTS got really bad last August and has pretty much stayed that way, not being able to stand for more than about one minute due to the tachycardia and low blood pressure. I tried increasing my salt which did help initially but then the extra salt caused the Helicobactor Pylori (which I didn’t know I had) to multiply bigtime and within weeks I had a stomach ulcer. I had to stop the salt and then get treated for the Helicobacter. This made me sicker in everyway possible and even now the ulcer problem has not gone away. More recently I tried Florinef, which did also help but after a few weeks it flared my stomach issue up badly and again I had to stop treatment. Propanolol is a beta blocker and it does work for many people. I had been reluctant to try it because last year when the POTS first got bad I tried a different beta blocker called Atenolol and it made things much worse! Anyway after hearing good reports from others that I know I decided to try this one out and …. YAAAHHHH!!! It’s working for me! I can now stand for as long as my legs will hold me which is currently about 3 or 4 minutes. I can also now sit on a stool which I was unable to de before. So, I can make a sandwich in one hit or make a cup of herbal tea. I am sure that over a bit of time I will regain more strength in my legs and will become more functional. I think deconditioning has been a big problem because I haven’t been able to do anything other than lay down all day. My muscles are week and my stamina is very very low. A walk to the kitchen (about 10 steps) puts me out of breath.

On a slightly more negative note …. My gut problems are not resolving. My Doctor and I really just have to guess what is going on because the only way to know for sure would be to have an endoscopy and colonoscopy … and I am still not able to leave the house so it’s impossible. We know for sure I had bacterial overgrowth last year which antibiotics cleared up. It’s highly likely that it’s returned. I also know I have Candida/Yeast problems, the clearest evidence of this is my toe nails which are all infected (not quite as gross as it sounds, just discoloured and weird). We also know from symptoms and some success with medication that I did and maybe still do have an ulcer. I take Nexium which reduces the amount of stomach acid your body produces but I still have constant pain/discomfort. I have just finished a short course of antibiotics hoping it would help a bacterial problem and it certainly stirred things up, but has not made things better. I now have Diflucan to try which kills Candida. I am trying to be brave but I know that if I do have Candida in the gut then the Diflucan will cause die off symptoms and I will be sick as a dog … but I guess ‘no pain no gain’. Aside from that I am currently taking Slippery elm which sooths the digestive tract and I take a good probiotic. What else … um … oh I take a digestive enzyme because my Pancreas is buggered. Other than that it’s just supplements etc.

A quick list of my other symptoms: Insomnia, constant fatigue, muscle weakness, some paralysis in my legs (varies day to day), random pain – (ligament, joint, bone, muscle), random fluey and ‘poison’ symptoms, low body temperature, random eye sight problems, constant back ache, headache, need to pee every 10 bloody minutes, blood sugar levels all over the place, night sweats, food intolerance, burning feet and hands, restless legs, numbness in right arm, tremors … um, I think I will stop there … I thought it was going to be a short list because I feel better than I did some months ago … but until you think about it you don’t really realise just how much is going on. I guess when it’s constant you do actually get used to some of it.

One last thing. Thanks to everyone who has bought cards or prints from the Art 4 XMRV project and to the artists who contribute. We are continuing to raise much needed money for CFS/ME research. If you’d like to have a look then please go here -

Also the Count ME in project is going great guns and has raised thousands of $$$. Please check them out here -


  1. My heart goes out to you dear Leelee. So many things to try to tackle at wonder you are drained of any energy..even though you don't have any to be drained of! I am always thinking of you and sending loving wishes your way..I wish i could make you All better and quick smart! And i think it is soo great that you are doing such a big part in raising awareness for this horrible illness and the work you add to redbubble too. you are indeed and inspiration and a treasure!! Big Love to and always..xoxoxoxo janie

  2. Blimey O'Riley, SO much to contend with all at once ! I really dont know how you keep your sense of humouur in tact. I'd be a snarling devil dog by now.

    Good that you seem to have finally found something that helps the POTS/OI. Think you are almost certainly right about the deconditioning so hopefully, in the coming weeks/months, you'll regain some stamina.

    Big hug (*) x

  3. So happy you have seen some improvement with the POTS drug - at last! I hope you can build on it and it has given you a little bit of a lift, not just physically!

    I feel for you with the gut problems - it is a minefield trying to work out what the problems are and sorting it out. Stomach acid issues must be really difficult to get a balance with, as it's so important to have enough, but too much is awful too. I have started taking enzymes and I think they are helping me. Hope the candida treatment doesn't make you feel too awful, but also I hope it works as if that is a problem you might feel better for killing it off :) Thanks for answering my question about why you suspect candida to be an issue. Which probiotic do you take? Do you feel better for it or just take it on faith? Sorry for all the questions, been thinking of you and wondering what's going on for you.

  4. I didn't realise you were quite so ill - perhaps because your online persona is so bubbly and funny and ALIVE! I'm so sorry you are going through all this. Sending good healing thoughts and hugs your way xoxoxox

  5. I'm so glad to hear that you've turned a corner although your list of symptoms is daunting. I'm so sorry that you're living with so much discomfort and illness. It does sound like you have a doctor (or more than one?) who is working with you and is willing to try different treatments.

    It's just so good to hear from you Lee Lee!

  6. Good to hear good news from you Lee Lee. There is no feeling like turning a corner even if it's one small step at a time. I hope you get better and better. Tc x

  7. I am so sorry that you are suffering with so many symptoms. It can be hard sometimes to feel hopeful. You feel yourself getting weaker and yet you can't walk from your bed let alone exercise. I have always worked harder to overcome a challenge -doesn't work here AND you are denied the benefit of a clear mind to nut your way through all the medical, emotional, dietry, physical and financial stuff. I always dress nicely (no way I am going to dress the way I feel, ugh)I don't look sick -" you look so well though" they say. This ilness doesn't even give you the benefit of immediate cause and effect. You have to work out what you did wrong 2 days ago OR it works the other way giving you 'New Treatment Hope' for a couple of weeks then crash. Talk about mind games! It does however give you a better appreciation of the the things that really matter - of how nice it feels on those occasions when you move freely w'out pain or less effort(I have found myself overjoyed to be changing the sheets or hanging something on the washing line simply because that day I finally can), for being able to walk to the front gate, for being able to spend a little time with family/friends, for the odd refreshing sleep, for feeling happy,for having someone care for me in this situation for 16 years... and oh so grateful for those little steps. I hope they continue.x

  8. From your online presence, one simply wouldn't know. Respect and good wishes flying in your direction from the forest edge.

  9. bah its a pain in the butt having cfs hey. Apart from the needing to pee one, I have found what my link was. Very grateful for it. Potassium/magnesium worked well for me. Potassium/Sodium regulate blood sugar levels, which looks to be the majority of symptoms. Worked for me. Have a look into it. Cost me $21.

    My friend found sea salts and nuts worked for her, which is the same idea. Doctors wont pick it up i think because they check sodium against potassium, if you dont have much of either, they will seem balanced.

    I spent four years and too much money trial and erroring. stupid bloody waste of time. well maybe not.