Friday, September 24, 2010

Tax return & Testing

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!


  1. I use a stool in the kitchen. It allows me to help out if I don't have the energy to stand while cooking or doing dishes....just an idea my Dr. suggested.

    I can't think of any more tests. I assume you've been checked for ALL the autoimmune diseases? Keep us updated, I like hearing about the avenues you're pursuing.

    It sucks you have to spend all your money on testing. Even if you can't get the MLV XMRV test yet, I bet it will be soon. I'm debating sending it off - I emailed and we can get it sent from Canada. The other thing is to keep your ears wide open for a study...then enroll and get tested through the study.

  2. I wouldn't worry about the boob job. I can vouch that as I got older, boobs started happening, like it or not. Then they immediately start melting downward. But for a brief period in my life, I had pecs. ;)

  3. I think the only place you can be tested for XMRV from Australia is Redlabs in Belgium. Good luck with all the test.

  4. I know VIP Dx needs the samples overnighted to them. Could that be a problem, shipping from Australia? I've got my requisition form and plan on getting my labs done on Monday (health allowing). When I get results, I'll be posting.

  5. Boob job for sure!


  6. for some reason my comment from yesterday never appeared. Oh well, I'll try again. As for testing, I'm assuming you've been tested for all the autoimmune diseases? Even the rare ones? How about Adison's?

    Aside from that, I'd say your exploring all posibilites that I'm aware of. Let us know how it goes/what you find out.

    Another thought about getting tested for MLVs and XMRV is to keep your ears wide open for news about studys in Australia. Then get enrolled and hopefully get tested (for free?) that way.

    My other very small peice of advice?! Set aside a few dollars of that money to do something (non testing) related for you....just something that will make you feel good.

  7. Thanks Melinda, I have chcked out Redlabs and it looks like they will do the xmrv testing. They say they need the blood sample within 48 hours rather than the 24 that VIP Dx want. It is expensive tho, all up I think it will cost me about $1000.
    Shelli, please do let us know your results :)
    Upnorth, I did see your first comment but yeah for some reason it wouldn't actually appear on the blog? Weird! Yes I have already been tested for all the usual stuff like Lupus, Addisons etc etc. Regarding XMRV studies in Australia I don't think there will be any. I called around all the people in the know and no one ha heard of anything and I emailed the WPI to see if they knew anything (seeing as tho assays would come from them) and they said no studies where planned for Australia at this time. So I guess I will have to spend the money if I really can't wait. hahaha, nooo patience LOL

  8. Vitamin D. Lactose intolerance can cause malabsorption.

    Otherwise I'm with Upnorth, save some to spend on yourself for a good time. I worry that you'll get all these test results that don't really tell you anything. How about a consult with a really clued up doc who can guide you?

    I'm not trying to take away your hope, I've just seen other blogger friends go through all of this and end up broke and none the wiser.

    Bet those stockings are sexy!

  9. I don't know what you have been tested for nutritionally but i would check for aneamia and vit B aneamia - they don't always check for those properly here, believe it or not (so rubbish). I know it's basic, but can really drag us down on top of everything else.

    I also worry that you are jumping in when XMRV may be a relatively harmless virus we just carry around for some reason, but which is not causing our daily symptoms. You could save the cash, gain a year's interest and see if it is still looking worth it? There won't be any trailled treatments in that time anyway... but i am far too sensible usually, so if it would help peace of mind... i just worry also that they have not really got the testing 100% reliable yet either, so it may be a false negative.

    Another thought about the constipation and feeling awful is that I have a touch of "Defecation Syncopy" in that the opening of the bowel affects blood flow and can cause a faint! I have not fainted, but often need to go lie down afterwards with a head spin - POTS treatment (midodrine) has helped (it is all connected). If I don't "go" in the morning the day is often much worse, as i find empty feels best in relation to that, though i am not sure that has been studied. Might be happening for you too? My specialist says they tested people by putting balloon up their bum and inflating it and BAM they pass out! It is the stretching that is the trigger. Wierd huh? (they didn't test me!).

  10. Congratulations on the tax refund! Unexpected money is always nice. Lately, it's been just the opposite with us, with unexpected expenses popping up!

    Wow, that's quite a list of potential tests!

    My doctor's rule of thumb on whether to order tests is whether there's anything she can do about the results. Early on in CFS, I asked for a bunch of little-known immune system function tests that are typically abnormal in people with CFS, but she said even if my results were abnormal, she had no way of treating those things. So, consider what you'll do with the results before committing to lots of expensive tests.

    Personally, since we know CFS causes activation of certain infections, I think it's important to be tested for infections that can be treated - Lyme and its co-infections, EBV, HHV-6. Hopefully, XMRV will soon be in that category as well!

    And, yes, definitely use some of the money to treat yourself!


  11. I agree with everything everyone before said. I also think you should take some of the money and do something wonderfully fabulous for yourself - something that you have been dying to do. Doing something nice for ourselves goes a long way!

    I have just recently been diagnosed with Celiac Disease so I am cutting all gluten out. I know when I have done it in the past plus added a pro/pre biotic, digestive enzymes and a nightly colon cleanser, I have hardly any problems with my stomach, colon, intestines and all of that! The gluten really wreaks havoc on my system. BTW, did you know that Celiac Disease is usually found in individuals with a European background? I found that really interesting when I read that!

    I also agree with Jo. I bet those stockings are sexy! ha ha! What a visual! :-)