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 - http://www.redbubble.com/people/art4xmrv

Also the Count ME in project is going great guns and has raised thousands of $$$. Please check them out here - http://countmeincampaign.blogspot.com/