please, what is AIHA ? I need help accessing green tea / concentrate as a therapy. australia

[aussiejo]

[Cllcanada Top Poster CURE Hero]

AIHA.. 'autoimmune hemolytic anemia' when your body starts attacking red blood cells.

extensive article here...

clltopics.org/Complications...

Also the thread here on HU

healthunlocked.com/cllsuppo...

[aussiejo]

Thank you so much !!! just finished reading. I will need to re read.

[PaulaS Volunteer in reply to aussiejo]

Hi Aussiejo,

I was somewhat reassured that it's not just me who reads articles here, then needs to re-read them. Sometimes it takes me 3 or 4 readings before my brain can get around stuff, (and some parts I have to skip over as being completely beyond my brainpower).

Paula

P.S. I wasn't wanting to sound too negative in the above - more to say that it really is worthwhile reading things a second or third time - it's surprising how things sometimes fall into place the second time round.

[aussiejo in reply to PaulaS]

I didn't take it negatively. Even a good novel, read the second time, can give a different understanding to the reader.

[Myrddin]

Another article you might find useful.

gponline.com/Clinical/artic...

[Quarry]

I did post on my experience (to data) on AIHA about 4 weeks ago....

Key thing you need for AIHA is Folic Acid (5 mg/day), as this vitamin helps with red blood cell production.

As far as I am aware Green Tea extract (which I am also on) is more CLL-prevention-of-progress-related, not for AIHA

Red cell production (in bone marrow) is measured via reticulocytes (from memory mine are about 3 or 4 times above normal) and this compensates (somewhat) for the spleen's destruction of them. The good news of a high reticulocytes is my bone marrow is in good shape: another indication the CLL is not advanced.

I have gone through the steroid treatment for AIHA and, whilst it stopped AIHA spectacularly when on steroids, it has come back now I am off them. So I am in the 40% where steroids don't work ling term. The steroid doses are very high, so it is not a long term option to keep on them.

So I suspect I am on next treatment later this month (I can notice my haemoglobin dropping). This will be I think retuximab. If that does not work probably cyclosporine and it that does not work, the spleen has to come out (which only has a 30-50% chance of working). After that, they start treating the CLL, which in my case I don't understand as the CLL is early stage..............So I hope I don't get that far!

Hope this helps

[Hidden in reply to Quarry]

Hi Quarry

Sorry to read your steroid treatment did not work long term. Hope that this month sees some positive progress and that it will not be necessary to remove your spleen.

Best wishes

Bub

[aussiejo in reply to Quarry]

Thank you for answering questions on AIHA and green tea. Sorry too to hear of steriod problem. Spleen removal - read article about vitamin d to get cells in spleen to behave, thus preventing the need for spleen removal. The article was accessed through cllcanada.

[Hidden]

Hi PaulaS and aussiejo

Nice to know I am not alone in re reading these articles which help us understand more about cll. First read and the brain turns to mush, I start picking things up as I return to the articles. I have a problem organising them especially as few apply to me at this stage. I find visual information a little more helpful but then they are not all at such a technical level as the articles. Hopefully we will have plenty of time to educate ourselves.

On the green tea question, I take the tablet form, 750 mg. green tea extract, found here in most health shops. Tried drinking the stuff,but found it foul tasting for this coffee drinker.

Hope today is a good dayl

Bub

[Quarry in reply to Hidden]

Bubnjay

Not only does it taste foul, my haemotoligist says you have to drink vats of the stuff a day to get required dose.............

Tablets painless!!

[ygtgo in reply to Quarry]

Behave yerselves ..... Green Tea is lovely !!!

I have in my cupboard - Green Tea .... Green Tea with .... Lemon ... Mango &Passion Fruit ... Blueberry ... Cranberry ... Mango & Lychee ... Apple & Pear ... Orange & Lotus Flower ... Pineapple & Grapefruit ... Peach & Cherry Blossom ... Tangerine & Verbena.

Mr Twinnings makes a nice cup of tea ..... ( Thinks - Why am I the only one at home who drinks this stuff ? )

Oh and 850mg of Green Tea extract from Simply Supplements ...... ( End of Commercial ... )

[Cllcanada Top Poster CURE Hero in reply to ygtgo]

You need to know where your green tea comes from... Chinese use many banned pesticides on their tea crops...

greenpeace.org/eastasia/Glo...

Good old Lipton Tea ...

greenpeace.org/eastasia/Glo...

[aussiejo in reply to Cllcanada]

cllcanada, thank you

[aussiejo in reply to ygtgo]

Hi ygtgo, green tea, so many flavours, thanks for the humour

[aussiejo in reply to Hidden]

Hi Bubnjay, thank you for reply, and warning of coping with information when dealing with a few issues at once. Yeah, I like pictures with articles, helps me mentally to relate and sort info. Time to educate ourselves - yes this is a biggy - time. Green tea information really helpful thank u.

[sparkler]

Green Tea?........personally, I don't touch the stuff......yuck! In my opinion, it's an insult to 'Tea' and not for me......I'll leave that for the rest of you. Lol

sparkler x (and my lovely strong proper cuppa)

[ygtgo in reply to sparkler]

.... well they say that green tea is good for you ..... and I will go through as many cups, and flavours, until I get the one cup that gives me the answer that I am looking for ......

Unfortunately my hobby is Tasseography .... ( Word for today ) .... and trying to get the right cup of tea is harder than trying to win the lottery .....

[sparkler in reply to ygtgo]

...well I'll let you do the hard work, when it comes to the green type. Let me know when you find 'The One'....but I'm guessing it's subjective.

For me it's the search for the perfect pillow ........ X

[ygtgo in reply to sparkler]

Oh dear ... I just looked up the Twinnings Tea web site ....

.... not suitable for Tasseography .........

[sparkler in reply to ygtgo]

Ah.....that's where you've been going wrong.......it's no good in bags either, I should think.....x

[aussiejo in reply to ygtgo]

Tasseography ? ? ? ill look it up

[aussiejo in reply to sparkler]

Hi sparkler, love your priorities, a perfect pillow sounds nice

[sparkler in reply to aussiejo]

Hi aussiejo........it would be, I'm sure.......if only I could find it. I can't tell you just how many I have bought.......and discarded over the years. So my search continues....... X

[Hidden]

hi ygtgo

pity I'm a coffee drinker, no tassograpy for me in those grounds especially if I use instant.

Bub

[Quantumman]

Hi, I source Green Tea extract from Vitacost in the USA. The capsules are standardised and consistent batch to batch. Their code :- NSI 3005284

Lee

[Cllcanada Top Poster CURE Hero in reply to Quantumman]

How much EGCG? That is what matters in CLL.

[aussiejo in reply to Quantumman]

Quantumman, thank you for green tea information

[Quantumman]

Standardised to 50% EGCG per capsule. Each capsule provides 250mg of EGCG .

[Hidden]

Thanks for all this green tea info, mine only say standardised to contain 40% polyphenols.

Investigating further, so much to learn, may need to change my supply.

[Ernest2]

Thanks for reminding me about EGCG, also an education in AIHA (down on my learning list)

I now perhaps know why I've been tested for reticulocytes a few times (If you can't spell that like me, then some people abbreviate it to "retics")

I'll start a new post on EGCG because I've got lots of points and think it deserves a dedicated new thread of it's own.

Now just need to make another cup first (green of course) . . .

Ernie