relavent cfs tests for aussies in australia

[heapsreal]

First i would like to ask Cort if it possible to have our own section for aussies as theres alot of difference with us and rest of the world, ie treatments available and testing.

Now I would like to ask other aussies on tests that we can get on our immune system here in australia, ones i know of are 1) lymphocyte subsets which help diagnose if our bodies are fighting an infection although doesnt specify what infection, 2)Lymphocyte function test, im in the process of getting this soon, not sure but think this measures NK cell function, from my knowledge has to be booked in and i know u can get it done through QML as well as other labs in australia, 3) neutrophils should be tested in full blood count, 4)RNase, i dont think u can get this test but is on my wish list, if anyone knows where to get it, let us all know, 5) most of the common viruses and bacterial infections relavent to cfs can be tested for but will only tell us of being past infected, if titres values ( dont seem to be in australia) were given this could help tell us if these viruses are reactivating, but this can be married up with the lymphocyte subsets to gives us an indication of a possible viral reactivation. 6) really a wish list test xmrv, if u know how to get this in australia, please let us all now, 7) immunolobulin tests, measure iga, igg and igm immunoglobulins which can show how strong our immune system is going and possibly other infections etc.

So ive blugged out 7 tests relatvent, some are wish tests but i think if we put all our heads together we can come up with list of tests relavent to us aussie cfsres

Please give some input, much appreciated,

cheers

 

[taniaaust1]

That is probably another good page to put in the Aust. book we are doing on Wiki... as we are so isolated and cant get the tests which are available in America and Canada (stuck on our remote island ) . Thank God we arent England where they cant get nothing done! We also have some things other parts of the world dont have which are triggers for ME/CFS eg RRV

I dont know of anywhere in Australia we can get RNase tested.
XMRV or MLV still isnt anywhere to get that tested in Australia.
I also havent been able to get any kind of tests for virus reactivation (just the tests which show if you've once had a virus). There may thou be somewhere to get that tested but i dont know.
I also couldnt get a tilt table test in SA (no idea if they do those anywhere in Aust either) but at least that can be sorted out by monitoring heart rate.
........
I havent got any of the immunoglobulins tests done either ....

ohhhh.. on just looking at my medical file just now.. i just spotting another new abnormality in my medical tests i had done the other day which i missed seeing... (oh crap.. now i have high ESR too)

 

[Megan]

There is one good test called 'Lymphocyte Surface Markers' from Gribbles that is covered by medicare so you can just get your GP to order it. It gives a CD4/CD8 T Cell ratio and a Natural Killer Cell count (but not function). But these things can be abnormal in us so this is an important one.

 

[Sunshine]

Now I would like to ask other aussies on tests that we can get on our immune system here in australia, cheers

Inflammatory Cytokines (worse after exercise)
TH17/IL-17
HHV-6 PCR, HHV-6 IgG titres/CMV/EBV etc
TH1, TH2
Perforin (helps NKC function)
NKC function
Immunophenotype
CD57 Absolute
RNaseL (would need to get blood to Belgium in Europe within 24hrs via FEDEX)

 

[cfssufferer]

I wrote a blog entry a few months ago about CFS related tests in Australia:
http://livingwithchronicfatiguesynd...d-tests-performed-in-australia-and-worldwide/

 

[Megan]

I wrote a blog entry a few months ago about CFS related tests in Australia:
http://livingwithchronicfatiguesynd...d-tests-performed-in-australia-and-worldwide/

Wow!

Thanks Theda, that list is fantastic, it is comprehensive and very helpful.

I didn't realise who you were on this forum. I had just corresponded with your partner re the new articles. Thanks for that too.

I had been looking everywhere for a NK function test here, so I don't have to pay through the nose to get Kenny to do the test in Belgioum. Thanks to Melodie and Heapsreal posting this info in another thread I have just heard from my doctor this morning that she has been able to arrange this test!

The link for the NK function test (from the above blog) is http://www.sswahs.nsw.gov.au/sswps/default_hb.htm

 

[cfssufferer]

Wow!

Thanks Theda, that list is fantastic, it is comprehensive and very helpful.

I didn't realise who you were on this forum. I had just corresponded with your partner re the new articles. Thanks for that too.

Hey Megan,

Im not Theda but I do understand why you thought I was! On the top of that blog entry I wrote Theda Myint because underneath I was referring to an article in the newspaper about her.

Theda and her family also composed a list of tests that she was getting done (mainly overseas test) and I also posted this list on my blog under International Tests.

 

[Megan]

Thanks for clearing that up, yes I did look very quickly at the blog :Retro redface:

But yes, the list is very helpful. Almost makes this thread redundant.

Except theres one test that I dont think I saw there whch has been helpful to me. It was the 'organic acids' test that Don Lewis ordered from Pathlab in Melbourne. It is very expensive, about $500 with no rebate but it is very comprehensive and showed up a number of things for me that were abnormal that he was able to correct with supplements. http://www.pathlabim.com.au/page.jsp?p_id=2#metabolic. If you tell them you're on a pension they can make it a bit cheaper.

 

[Megan]

After going through a whole lot of rigmarole I got my blood sent to the lab in Sydney to to the NK function test. A couple of days later I got a call from my doctor saying they called her and said "they dont do the test for CFS patients". She had already pre arranged it with the lab, but apparently hadn't got approval from the right person! I was pretty annoyed. Just thought I'd better post it here so people know. I guess if you want the test you might need to get your doctor to say it's for something else.

 

[heapsreal]

thats bs megan, tell them where to go, they shouldnt be asking u, maybe get your doc to write something else on your request form like chronic viral infections etc. i just got same test done by qml in brisbane, i had to book in for it and when having the test they said to me i must be sick having this test and i told them i had alot of viral reactivation type stuff going on, i try not to mention cfs.

cheers!!!!

 

[Megan]

Thanks Heapsreal,

I think my doctor made the mistake of saying CFS, not that we knew it was a mistake at the time. I just spoke to the doctor this morning and she said even if I paid fully would they do the test and they said no. Said it would "open the floodgates" if they allowed this expensive test for CFS. grrrr!

Access to some of these tests I think is really important. I will be seeing someone from the CFS society this week so will add it to my list of issues.

 

[heapsreal]

hi megan, i have had numerous lymphocyte sub set tests done over the last few years and they have always been abnormal, results coming back saying i have lymphocytosis(elevated lymphocytes and or sub sets), so maybe having this as a history helps justify the lymphocyte function test. Maybe get a lymphocyte subset test done which is alot easier to get done then the lymphocyte function test, then get a second one done 3 months later and if both these tests are abnormal it can then justify a lymphocyte function test. lymph sub set test can also be a good tool to see how your immune system is going eg if elevated can indicate your fighting some type of infection and if the second test is similar then u can say your fighting some type of chronic infection. my doc speculates from this test that i have ebv/cmv viral reactivation and this is how i got onto antivirals which have been of great help.

cheers!!!!

 

[Megan]

Heapsreal,

I literally don't have enough energy to fight this one. I have consistently had abnormal reasults on the 'lymphocyte surface markers test' which shows CD4, CD8 and NK cell counts and the CD4/CD8 ratio. Every time I have had an abnormally high CD4/CD8 ratio due to depleted numbers of CD8 T cells. Have also had very low borderline normal NK cell counts. Is this the same as the 'lymphocyte sub set' test you are talking about?

They are doing the LSM test again and I asked the doctor if they would do the function test if my LSM results were abnormal and she said no.

 

[heapsreal]

yes, lymphocyte surface markers are the lymph sub set test. are your cd8 numbers elevated or below range. my cd8 numbers have always been high, which can be a sign of one of the herpes viruses(ebv, cmv, hhv6) reactivating, if low can mean your immune system is tiring. Hopefully when the retrovirus info filters through the medical community in australia we will be able to get these tests alot easier.

cheers!!

 

[Ash]

I'll have to come back to this later & write up a list for my Brisbane trip...

Do you think Dr D will know what to run heapsreal or will I have to ask for a list?

 

[heapsreal]

hi ash
he will do certain things without asking but i will pm u tomorrow sometime on a few things to ask for. the lymph sub set test being important and the lymphocyte function tests being another which i have just had through qml, but yes he is very open to suggestions especially if u know what your talking about. he's not like alot of docs who are so far up themselves, but will listen to u and try and fill your requests, but will tell u if something is not useful for cfs. if u have previous tests done i would bring them and or try and get a hold of them fom the pathology places, maybe emailing dr d a couple of weeks before hand so he can get all your previous tests over the last few years from the path labs sent directly to him would be of benifit, he has the aauthority to get this info from them.
but i will get back to u soon,

cheers!!!!

 

[gerri]

Hi tania

Feel for me here in NZ!!

I was sick for more than 3 months last year before my doctor decided that the ongoing symptoms werent a virus. She tested inflammatory markers, which vere above normal, as thet have been for a long time. CMV (cytomegalovirus) EBV Epstein barr. These need to be the IGG tests on both. This is the virus that caused me to become ill, as well as very low B12, Iron, due to severe stress. All of this was a chain reaction from a compromised immune system. nice one!

The XMRV tests arent available here yet either. Byt with the symptoms & the bloods your doctor should be able to shed some light as to whether it all ties up with CFS or not.
I must say though, my GP is on the ball and she immediately mentioned that this is whats wrong, as the profile fitted with the blood tests. I am also diabetic which doesnt help the cause.

 

[taniaaust1]

Hi tania

Byt with the symptoms & the bloods your doctor should be able to shed some light as to whether it all ties up with CFS or not.
I must say though, my GP is on the ball and she immediately mentioned that this is whats wrong, as the profile fitted with the blood tests. I am also diabetic which doesnt help the cause.

i wish.. my GP dont know anything at all about CFS/ME and wont give me any kind of treatment for it at all... not even sleeping pills or melatonin