Friday, September 24, 2010
I got my tax return this week. Because I worked only 5 months last year before I got really sick I was able to get most f the tax I had paid back - $3000. I have decide to spend all or as much as needed on getting more tests done. There are zillions of things to test for and so this week I am trying to work out what tests I think are important for me to have and which ones are actually possible to get. I was keen to get tested for XMRV, I know it’s early days in terms of the available testing protocols etc but it might at least let me stop thinking about if XMRV is relevant to me. The problem is I can’t find a way to get tested from Australia. I emailed VIP Dx and they said that they are not able to offer testing to people in Australia. I did see on a forum somewhere though that a person in New Zealand had been tested through VIP Dx, so …..? If anyone has any info on how to get tested then please let me know.
I am also thinking I’d like to get a SPECT scan done which tests for blood flow to and around the brain. I know Dr Hyde believes that if one of the arteries that carries blood to your brain (I think you have 3?) is blocked this alone can be responsible for CFS in some people.
I know I have some gut problems and I personally believe that whatever those issues are they contribute largely to my symptoms. If I have a day where I feel constipated for example then my malaise and muscle pain and flue like symptoms are through the roof, so that is something that really needs further exploration. I am currently on a Candida diet and I can see that something’s happening due to that. I have come out in big pimple type things all over my body, not very pretty at the moment but it shows that toxins are escaping through my skin which is a gooood thing! Anyway, so I am thinking I also should get some extensive food allergy testing done which is really really expensive but at least I can then tick that off the list. I know I have food allergy stuff, I have had Celiacs for a long time and am lactose intolerant. My stomach feels uncomfortable or weird or painful every single day in varying degrees so I wouldn’t be surprised if it’s food related.
I have just had some general tests done for bacterial stuff and I was positive for chlamydia pneumoniae. I also was tested for Lyme and Ricketsia but I wont get those results till this week. I would like to get further testing in this area done.
I did try to get an MRI of my brain done a few months ago but the EMR made me so dizzy and sick we had to stop. I am not sure if there is much point in getting it done anyway? I guess it would rule out a tumour?
Is there anything else that anyone can think of that’s important?? It’s such a minefield I know!
In the meantime my plan is to continue with the anti Candida stuff and sit tight. I don’t want to make any real treatment plans until I have all these tests sorted. I don’t want to go down the wrong path. Oh and I meant to say that I got myself some waste high compression stockings for my POTS and they actually do help. I was able to stand for 45 minutes in the kitchen the other day and cook. My legs gave out at that point and I was starting to feel dizzy but previously I could only stand for about 5 minutes maximum. The problem with standing for 45 minutes was I got 2 days of payback because of the stress on my muscles, hahaha you can’t win!
If after all this testing if I have any money left from my tax return I might get either some botox or a boob job, what do you think? Hahahaha!
Thursday, September 16, 2010
This is my mantra, ‘be your own detective’. Even if you have a fantastic Dr like I do you have to recognize how limiting a trip o he Dr can be. Usually they give standard 10-15 minute appointments and they see dozens of patients in a day. Just because you are really sick and have been seeing the same Dr for years doesn’t mean you can expect them to remember that a month ago you started taking CoQ10 and you stopped talking the sleeping medication. Of course all this info is right there on the screen in front of them but if you want them to help you then you have to help them!
This illness is a puzzle and chances are you spend way more time thinking about what is wrong with you than your Dr does. I think that if you help them with information then they have the tools to help sort things out, but if you want them to do all the work you will be sick forever. Your choice!
I see my Dr every 2 weeks. I always take a list of questions which are based on research I have done that I think could apply to me. This week it was about coming to the conclusion that I really do have a bad candida problem. I laid out why I thought this was the case and what I though the best approach for me would be. My Dr asked a few questions and agreed with me, he asked more questions and then slightly re-directed my approach. Fantastic result. If I had just gone in and said I feel bloated and blah blah blah he probably wouldn’t have been able to diagnose candida in a 15 minute appointment, but I had had 2 weeks to think about it and try to work it out.
The other thing I always do when I first go in is to quickly refresh his memory about where we are at. This week I said, I had been taking the antibiotics you prescribed 3 weeks ago and this is what happened, blah blah blah. It seems to save a lot of time as opposed to him trying to read back over my chart while I am yapping away at him.
The thing I am planning on doing this week is to lay out all my test results from the last year onto a spread sheet so I can easily see what I have been tested for, what was positive or negative or abnormal. Then I can perhaps see more clearly what other tests I need to get done and also maybe see a pattern of what is going on.
Seems like common sense but for some reason we just tend to leave this stuff in the Dr’s hands and I think it’s a huge mistake … they don’t have the time to put it all together and there is no reason we cant do it ourselves. The internet can give you all the answers if you just bother to have a look.
I have noticed from talking to lots of you and also people on facebook that most people don’t often see a Dr. No wonder most of us never get better!!!
I Know that the big picture is incredibly complex and so getting totally well is unlikely but I also know most of us have multiple infections and sensitivities to things. Surely we can work out why some of these are occurring and fix those specific bits and pieces? That has got to improve things!!
One last thing quickly. Going back to a previous post. My Holter tape results show my heart rate varied between 55 and 200 beats per minutes as a result of POTS. My echocardiogram showed a tiny whole in the mitral valve but nothing to be concerned about. So, regarding the POTS I have a choice of medications I can try but …. I have found something else useful instead. I googled all the medications I was on to see if any of those could be making the POTS worse and what do you know .. one of them was shown to cause a drop in blood pressure when standing. I mentioned this to my Dr and he knew that was the case but had forgotten I was even on that medication because he prescribed it long before I had any POTS issues … See, be your own detective. I have now stopped that medication and the POTS isn’t gone but is significantly improved. YAH!!!!!!!
Monday, September 13, 2010
It seems I have really stuffed up badly and paid the price. I have learnt just how important it is to have all the bits of the puzzle before you set off on a journey. When I decided to go back on the antibiotics my Dr said that I would need to also go on probiotics and antifungal medication because the antibiotics would be killing off all the bacteria in my guy and there would be nothing to fight of Candida. At the time I was worried about herx from antibiotics so I decided I would postpone the antifungal medication for a few weeks until my body was ready. BIG mistake! I am such a good researcher and yet I stupidly overlooked the seriousness of Candida within the equation. I hadn’t realised just how damaging Candida can be in it’s own right. It can in fact cause many of the usual CFS/ME symptoms because it can overtime grow all through your body. Icky stuff.
So, I started the antibiotics about a month ago and had a few fluey yucky days and then started to feel significantly better. Big smile I waited 2 weeks and started the antifungal and once again felt like I was going to die. Several days totally bedbound and a few more days feeling like I had severe food poisoning. Wow, this was a major herx. It made me think that perhaps I already had a Candida problem big time. I stopped taking the antifungals because I felt it was at that point dangerous but the symptoms continued for another 5 days. I then managed to do some research and came to the conclusion that I needed to also stop the antibiotics because they were now feeding the Candida. The day after I stopped the antibiotics I felt hugely better and continued to improve over the following couple of days.
So what now? Um …… I do think I was on the right track but stuffed up because I didn’t have all the info I needed first. I did things the wrong way round. My new plan is to address the Candida issue first and then go back to antibiotics. Because of the severity of his recent herx I need to start slowly so I have adjusted my diet so the Candida starts to die of naturally. I have cut out as much sugar as possible and bad carbs and anything yeasty or fungal. I have also started eating lots of garlic, ginger, chilli and coconut which are all things shown to kill Candida. I plan on doing this for a week or two and then go back onto a very low dose of the antifungal medication and increase that as I can tolerate. Once I have done all of this for a while I can get back to the antibiotics.
I will be seeing my Dr in a couple of days so will discuss all of this with him just in case he has a better idea etc.
Oh boy life can be exciting!
Oh, I did get the results from my Holter test and Echocardiogram, I will do a post about that shortly .... nothing exciting to tell ...
Thursday, September 2, 2010
I have a few things to mention on this post. My brain is a bit frazzled again today so sorry if this is incoherent.
Firstly, I am having some heart related tests done to gain some more insight into my POTS issue so we can work out the best way to try and treat it. Last week I did a 24 hour holter test. This is where they attach electrode type things all over you which read heart rate and blood pressure over a 24 hour period. The point of this is to see how high and low my readings are within a day. There is no point prescribing mediation to raise my blood pressure if in fact it is already high at certain times of day so it’s important to get this info. It may sound like I am being overly cautious but I have already had one really bad medication experience using beta blockers to try and help the POTS. Next week I am going for an echocardiogram just to make sure there is nothing else going on which could be an influence. When I saw the POTS specialist for my initial consultation he said it sounded like I had a mitral heart valve defect, so it will be good to know for sure.
Secondly, I am advancing in my trial of antibiotics. I have been on them a few weeks and I do believe there is positive change occurring. I seem to have a couple days where I feel really good by my standards and then a couple of days of the flu like stuff, so this would suggest a herxing of bacteria. Two days ago I started taking Nystatin which is an antifungal medication. If you are taking antibiotics long term it’s a good idea to also take the antifungal because the antibiotics kill all the bacteria in your gut and without thriving good bacteria candida/yeast will flourish and that’s a bad thing. Of course I am also taking a good probiotic to help replenish the good bacteria.
Regarding candida I do think I probably had a problem with this anyway which needed addressing. There is a good questionnaire on Dr Greg Emersons site which will help you work out if you have this problem. He also has other useful questionnaires too. There is also a article explaining just what candida can do to you if you have CFS or FM, check that out here, it’s well worth a read.
Lastly I have another link to share if you are interested in probiotics. Melinda on facebook passed this onto me. Here and more here.