my drug therapy for thalassemia intermedia

I'm currently considering to try the natural therapy to reduce iron overload. I'll let you know what I'm taking and the results!
Thank you for now.

Andy

Sorry Andy,

I need your help about IP6. I found "Source Naturals" IP6 800mg. Do you think it's good or do you suggest to look for "Jarrow Formulas" 500mg?
And what about the dosage?
Many thanks.

Andy

I just wanted to mention something I recently found on the natural vitamin E subject (please note that I have not tried this product myself yet, it was just recommended to me by a friend), it is Rice Bran Solubles (the one he recommended was through a small company called pureplanet.com ran by a naturalist and whole/organic food enthusiast). I think that all of their products are completely organic, no GMO's, no additives, etc. It might be worth a try - if you visit the site the rice bran solubles are on the second page under products (there are only two pages total and its listed as about $25 USD, the site offers more info like nutrional content, etc.)

Best wishes!

Andy,

Either product will work. I find Jarrow to be a bit more expensive. I would suggest taking in the range of 1000-4000 mg daily. Do not take at the same time as milk.

Hi Andy,
I would like to talk again about magnesium pidolate dose I'm taking because you said that in your opinion it was a little bit high.
I am taking 2 sachets a day (one in the morning and one in the afternoon) corresponding to magnesium pidolate 2.250g (equal to 184mg of Mg++ ion).
In one of your post you advice to take Magnesium from 500mg to 1000mg and that's probably why you think I'm taking too much.
But my question is: the dose of Magnesium I'm taking is 2.250g x2 a day or 184mg x2 a day.
I hope my question is clear to you.

Thanks in advance.

Andy

The dose you take would be considered as the higher amount, or the amount advertised on the product. Each form of magnesium has a different percentage of elemental magnesium, and then for each there are varying percentages of bio-availability.
The doses I advise tend to be conservative, as it is general and it is intended to address basic needs. The doses a patient uses may be higher, especially for certain nutrients. Your dose of magnesium is within acceptable ranges and makes sense in the context of your treatment program.
How is your chelation going?

Hi Andy,

thanks for your reply. I was asking about MAG2 dosage because it seems I'm having some problems when I take all the sachet but I don't know if it depends on citric acid in it that is not tolerated by my poor stomach suffering a lot in this period.
So in order not to stop MAG2 I was wondering if I could take less or change the sachet with the bottle (no citric acid in it).
I don't really understand if it's a problem with MAG itself or the eccipients. And I realized in the past how important was to take MAG for my health!
Or maybe I'm taking too small protection for my stomach (Pantorc 20mg a day).
It's not a good period for me and for my stomach too...........it seems it's not working at all.......the digestion is too slow.......I felt acid in the mouth..........I lost appetite.......and I lost weight too........I feel my liver a little bit heavy..........
About the chelation........I tried desferal just not to put another medicine on my stomach but since I' not doing transfusion I felt bad with the siyntoms I read in many post here after 4 or five somministration and I stopped (agreed with the doctor).
Now we decided that's not my priority since my ferritin is about 500.
My priority is the stomach and to restart the full dosage of my good working cure.
I don't know if digestive problems could come from the 2cm stone in the gallbladder or just from the stomach or from the fatty and tired liver.
Unfortunately I didn't ever drank tea during meals but I'm trying now.
And I didn't tried yet any natural chelators (Green tea extract, IP6, Wheatgrass) but I am very anxiuos to try as soon is possible.

Thanks a lot again.

Andy

I think you should cut the dose in half and see if your system tolerates it better. If it doesn't, you might consider trying a different form of magnesium. One thing I learned while reading about the different forms of magnesium is that in the end, it makes little difference, even with organic versus inorganic forms. They are all absorbed well enough to be of value.

Now I'm taking MAG2 in bottle (without citric acid) and it seems that my system (stomach in particular) tolerates it better. I'm continuing with Pantorc 20mg in the morning to protect my stomach. And finally I'm having tea all the day specially during meals. Do you suggest the black or the green one? With or without sugar?
Tomorrow I will have blood analysis to check the whole situation.
I continue to have difficult digestion e I feel my liver a little tired and heavy.
So let's see what's wrong. Pantorc eliminates the fire in my stomach but doesn't ameliorate digestion.
As soon as possible I would like to start with supplements you told me (Wheatgrass, Green tea extract, IP6).
I'm sure they could give me more help.
In fact the point is that the cure I've been doing for so long works fine enough when everything else is ok, for instance stomach, liver, no virus but when something goes wrong with flu, gastritis, etc my situation goes down and I don't know what to do and what to take since I'm already taking many medicines and I'm afraid to take strong therapy like antibiotics for instance.
So I hope the natural supplements above could help me about that!

I would like to give you some news about the therapy I'm having for many years (low dose hydroxyurea plus magnesium and carnitine for thalassemia intermedia).
My last blood tests were 11 hgb with 0.01 percentage of fetal hgb.
I haven't checked fetal hgb for long time but I can remember my starting level was significantly higher than now.
First I was surprised enough because I have always known that my therapy was about fetal globin reactivation but yesterday I found on the net this document I link for you below.
http://www.ncbi.nlm.nih.gov/pubmed/7646994
In this trial they discover another potential effect of hydroxyurea on adult beta globin.
I would like to ask Andy what he thinks about.

Thanks.

Andy

Andy,

Hydroxyurea has two main actions with thal intermedia patients. It can activate the gamma globin gene in some patients, but the second action of suppressing ineffective erythropoiesis is possible for all patients and the importance of this is often overlooked. There is the obvious benefit of a reduction of bone expansion by lowered bone marrow activity, and there is the important effect of not having so many bad red blood cells produced. These bad RBC's destroy good RBC's and their absence can allow more good RBC's to survive. This would explain the increase in Hb without an increase in HbF.

Thanks Andy for your quick and clear reply.
I think the cure I've been doing for many years is still working and maybe I don't need to interrupt or change it.
Apart a moderate iron load in liver that I should decide to manage soon, my only concern is about a low platelets count (between 100000 and 120000) I'm having in the last three years. I don't understand if it's Hydroxy or L-carnitine or more probabily their combination.
Anyway I'm monitoring close this count.

Thanks again.

Andy 

Hi Andy I've just had my blood test results and I would like to ask you somenthing about them.
I post only low/high values.
 
WBC 4,07 (N.V. 5,00 - 10,00)
PLT 121 (N.V. 130 - 400)
Fibrinogen 147 (N.V. 150 - 400)
Creatinine 0,67 (N.V. 0,80 - 1,30)
Total cholesterol 103 (N.V. 140 - 240)
Folic acid 51,7 (N.V. 3 - 17)
Ferritin 530 (N.V. 20 - 320)
Parathyroid 75 (N.V. 12 - 72)
B12 vitamin 249 (N.V. 179 - 1162)
D vitamin 16,3 (N.V. 30 - 100)

I'm keeping my drug therapy and everything else is going good (for instance Hb is 10,9) but I think it's time to make some changes.
Since I've been taking 7,5mg folic acid for many years I'm wondering if I should stop or reduce.
Maybe I should consider B12 and D vitamin integrator.
What do you suggest?
Thanks a lot.

Andy
 

Andy,

I suggest attacking the low vitamin D. Your folate is fine so reducing the dose is not a problem. My experience with D is I saw no change until I went to 5000 IU daily and I am currently taking 10,000 IU daily. I also feel that it is difficult to analyze other deficiencies when the D is low, as D affects the absorption of so many nutrients. You also might want to take sublingual B-12 tablets a couple times a day. I also take my D as  liquid so I can swish it under my tongue before swallowing.