Supplements and tiredness - how long before it goes away?

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Offline Bigg

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Supplements and tiredness - how long before it goes away?
« on: June 27, 2008, 09:19:12 AM »
Hi everyone,

So I started taking wheatgrass, IP-6, resvweratrol, B complex vitamins, vitamin B12 (severe deficiency confirmed by a blood test), vitamin D (most severe deficiency confirmed by a blood test), multivitamin, zinc, magnesium. I assume that I get enough calcium from dairy products I eat everyday.

Everything done accordingly with directions given by Andy in one of the threads.
I assume that beta thalassemia minor that I have (and resulting vitamin deficiencies) is responsible in greater part for my tiredness.

So now the question is: when can I expect real results ?
I take the whole set of supplements for 10 days now, and I have noticed a difference (but it is small) - in some aspects I feel better.
But as I read it takes 120 days for one erythrocyte to be replaced by another so it looks like it will be four months before there is a real difference (then the erythrocytes will have resveratrol induced hemoglobin F incorporated and when this happens, the hemolysis rate will be decreased and the body will not have to produce so many replacement erythrocytes, so the it will be in less strain).

I would like especially to hear from thal minors, when their symptoms were relieved and any other sugestions as well.

Best regards,
Biggero

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Offline Bigg

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Re: Supplements and tiredness - how long before it goes away?
« Reply #1 on: July 21, 2008, 10:24:35 PM »
So, I am answering to myself, because I have some very good results.

I found this supplement on puritan's site, called "iron free GREEN SOURCE".
It is multivitamin and it has ginseng and a lot of other "green" components and microelements so rarely  seen in other supplements like boron. It does not have iron, but it has considerable amounts of vitamin C, so I guess it would be only good for thal minors, and not taken during meals with meat.

http://www.puritan.com/pages/file.asp?xs=6AD72E0C9C944554B4919A8F3DB8BB16&PID=617&CID=&CPID=1026

3 days of taking it, and I felt even better than with all the other supplements. But still it was not good enough, I was tired.
6 days and my joints started aching, and I got even more tired...
At this point I reminded myself that I was also diagnosed with hyperuricemia, and even used to take some drugs to counteract it, but without any effect. Vitamin C causes uric acid to be released from deposits into the bloodstream, so my joints started aching, and my muscles too.

Here is the link describing just that:
http://www.buzzle.com/articles/vitamin-c-for-gout-it-is-a-good-idea-but-theres-a-caution-if-you-use-it-as-a-gout-treatment.html

So I started taking natural drugs for gout (although I do not have a typical gout with a lot of inflamation around joints, I do not have any indication of inflammation in my blood tests, but nevertheless it hurts): cherries and potassium citrate.
Vitamin C acts as mobilizer of uric acid and cherries and potassium citrate help kidneys to get it rid of uric acid. So. presumably it is even better than any other treatment.

After 2 more days the whole tiredness was gone!! Completely!!
Beside thalassemia minor I also have problems with my muscles, which can break and release uric acid. So until now I never had a complete treatment - for thalassemia, my muscles and gout-like symptoms. Now I finally got to it...

If you wonder if you can benefit from my therapy, I will tell you this: there are some people with muscle and joint pain and with thalassemia. The therapy is worth of trying, if nothing else works, because it is safe and may be effective. (I am not quite sure, but can thalassemia cause hyperuricemia?)
I would recommend the following sequence:
-first taking vitamin C and cherries
-if that doesn't help, taking potassiium citrate (it may be difficult to obtain, so there is a backup option: baking soda, information available in the internet)

My blood test results do not show any improvement as of yet, but I am all hoping for the best...

Regards,
Bigg

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Offline Andy Battaglia

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Re: Supplements and tiredness - how long before it goes away?
« Reply #2 on: July 22, 2008, 12:30:40 AM »
Bigg,

Your determination to find answers may be finally paying off. I think the initial reaction of your body was indeed due to a purification process and hoepfully you are now seeing a positive change. Please remember that natural methods will not produce instant results and that the studies done with wheatgrass showed it took a full year to realize the full benefits. Please keep us posted on what you do learn.
Andy

All we are saying is give thals a chance.

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Offline ak82

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Re: Supplements and tiredness - how long before it goes away?
« Reply #3 on: August 19, 2008, 05:35:10 PM »
Hi there, and thanks for the info in the thread.

Although it does slightly confuse me.  In the end, you state that your suggestion is Vitamin C and cherries.  This seems a little simplistic.  I have taken large doses of Vitamin C but to no avail.  1000mcg a day at least, and i regularly eat cherries.  I have to say that these 2 do not really seem to affect thal minor.

potassium citrate is available over thecounter as far as im aware, although the pharmacist looked at me a little funny, as it is for urinary problems.

I would love to hear from you and how ur treatments are going.  It seemed at the start, that you had a complex, but thought out regime.  BUt it ended with VitC and cherries, with possibly adding potassium citrate.

I am taking folic acid, and Vit B12.  Started yesterday.  Dont notice anything so far :(

Most of the time, im too tired to even bother writing messages on this forum.

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Offline §ãJ¡Ð ساجد

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Re: Supplements and tiredness - how long before it goes away?
« Reply #4 on: August 20, 2008, 05:24:40 AM »
1000mcg! a High dose?!?!

I use about 250mg which translates to 25,0000mcg for my chelation therapy and I am a Major who are advised to avoid high doses and 250mg is not a high dose.

You should get your Serum Ferritin checked and if it is low then you need to up your iron intake along with Vit. C. Best way is to have healthy doses of greens and citrus.
اَسّلامُ علیکم Peace be Upon you
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Offline Bigg

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Re: Supplements and tiredness - how long before it goes away?
« Reply #5 on: August 20, 2008, 01:00:22 PM »
> Although it does slightly confuse me.  In the end, you state that your suggestion is Vitamin C and cherries.  This seems a little simplistic. 
Well, if I recommended only this, it would indeed be simplistic. But I recommend it as one of many things that can work. It's another idea that just might work. Unfortunetely everybody is different and everybody has to look for himself/herself.

> Most of the time, im too tired to even bother writing messages on this forum.
Same here most of the time. It is really difficult to get yourself together enough to try to look for some answers. But that's the only way to go, we have to try. So this treatment that I come up with is only such an attempt. It worked for me and I can't promise it will work for anybody. But trying this out is important, because we can gather more information and then other people will benefit too.

I will try to describe people who in my opinion can benefit and why.
When the erythrocytes in thals break down they spill garbage which causes acidity and hyperuricemia (excess uric acid).

http://www.emedicine.com/PED/topic2229.htm

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Occasionally, gout due to hyperuricemia may be encountered.

In my case this hyperuricemia causes tiredness and I am completely sure of this. I am in a kind of pre-gout state where I get joint and tendon pains (inflammation apparently not that intensive as with gout), but I do not have inflammation markers in blood test (ESR, CRP), which is strange.
So people who can benefit from this treatment are people who have hyperuricemia and body acidity. This may be not your case. You may have very good kidneys which will excrete uric acid or very good metabolism, which will not produce uric acid and will deal with acidity on its own.
This treatment will not work for you then.
You may have a very healthy vegetarian diet, consisting for example of citrus fruit and you will have
already alkalized body and still be tired. This treatment will not work for you then either. BTW. What we basically do when taking citrates and vitamin C is that we simulate eating large amounts of lemons or oranges, as our old predecessors living in jungle did, so we simulate nature, but also make it easier for us to eat it - I can't imagine eating 10 lemons a day - I tried this once - results: irritated stomach and it was bad for teeth enamel.

You can measure blood uric acid so you can know already if you fall into this cathegory, but you can't measure acidity, so the easiest way to figgure it out is to see if you get better after alkalization.

The queston now is how much you should alkalize, ie. how much citrate you should take. The best way to find out is to check urine with urine strips and see if ph is around 7 (neutral). Otherwise you  have to empley some trial-and-error here. You can take potassium citrate, sodium citrate, magensium citrate and citric acid. You should be aware of limits and possible side effects of all of them.

Potassium citrate - if you take it too much it may cause you heart problems, it causes hypotension and eventually heart stops with very high dose. Thats why in the US the highest possible dose of potassium in one tablet is 99 mg.

http://www.puritan.com/pages/file.asp?CID=36&CPID=1171&PID=173&searchterm=potassium%20citrate&rdcnt=1

Recommended dosage is one tablet a day.
I take about 3 tablets at once, but I am used to it. If you take it without getting used to such a dose, you may have trouble with your heart. 3 tablets will do no harm if you are used to, because potassium will be very quickly excreted to urine.

Sodium citrate - If you are afraid to overdose potassium citrate, you can try sodium citrate.
It causes hypertension, so eating one half of teaspoon of sodium citrate is just like eating half of teaspoon of salt. I would recommend diet without salt then.
How do you obtain sodium citrate? You won't buy it. You have to take baking soda and citric acid and mix it in a solution (very small quantity of water like 2 table spoons), adding ingredients until bubbling stops.

Magnesium citrate - If you take supplemental magnesium, your first choice should be always magnesium citrate. Not only it provides magnesium, but also citrate ! Unfortunetely, you can't have your full dose of citrate using this, because it would be probalby too much magnesium.

Please bear in mind, that what counts here is citrate part of compound, not the metal part (potassium, sodium, magnesium). So you can't take for example potassium aspartate - there will be no effect.

Citric acid. You can also do alkalization using citric acid, however the sour taste and burning in stomach (after a month of using it) and rough tooth enamel are not what you want in the long run. I experienced this. Same thing applies to lemons and oranges.

All these citrates are for urinary problems, namely kidney stones. When you alkalize urine these stones dissolve. We use the same principle here, except we dissolve uric acid earlier in the body.
Some doctors use citrates in gout treatment as it is pointed out in usage instructions of for example Bicitra. (sodium and potassium citrate and citric acid mixed)

http://www.webmd.com/drugs/drug-15611-Bicitra+Oral.aspx?drugid=15611&drugname=Bicitra+Oral

Quote
This medication is used to make the urine less acidic. Urine that is less acidic helps the kidneys get rid of uric acid, helping to prevent gout and certain types of kidney stones (urate). This medication can also prevent and treat certain metabolic problems (acidosis) caused by kidney disease.

The other doctors do not even want to hear about using citrates. Quote from my urologist - "you do not have kidney stones, so it's better not to alkalize urine because you can develop other stones and you can get urinary bacterial infection".
To adress these concerns I must say that we should not use doses which could cause this other type of kidney stones (ie. stones which do not dissolve in alkaline solution). If you take it once in the morning, then your urine will be alkalic for the first half of day, then will be acidic.
And this is how it should really be - first you get rid of stones (chemical compounds) dissolving in alkaline urine, then you get rid of stones (chemical compounds) dissolving in acidic urine from your kidneys.
As usual, we cannot overdo and overdose and we have to use common sense here.

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Ok, now what about vitamin C?
You can benefit from it in many ways, everybody knows that. Thals will benefit because it is antioxidant, so it saves erythrocytes from breaking down.
The other benefit, about which I already wrote, is that vitamin C can mobilize uric acid from your tissues as it is kind of chelating agent. Whem it does that and you indeed have problems with uric acid, all this uric acid in the blood will only make the situation worse, especially that vitamin C increases body acidity. That was why I avoided vitamin C for a long time, because it had a bad effect on me. What you can do here - alkalize body even more to remove uric acid or stop taking vitamin C and let the alkalization you do already do its job.
After some time all the uric acid will be flushed and you should feel better. It took about a week for me.

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Cherries. Do you eat black, sour cherries? Sweet cherries are good for nothing.

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Try Gin-seng. I wouldn't feel good without it.
Puritan's iron-free green source has it, but any other multivitamin with Gin-seng will be good. Puritan's got additional benefit of being iron free.

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> I would love to hear from you and how ur treatments are going.
Generally, I'm improving. Tiredness and pains under control (ie. gone). Of course I have to rest more and get tired faster than normal people, but that can be dealt with.
Unfortunately I have a total dryness of mouth and nose and because of this I had some kind of flu,
sore throat and fever. And we have summer here...
So I increased vitamin C dose to 5000 mg (google out "vitamin C megadose") and problems with sore throat is gone, but the dryness is still there. However all people should (probably) stick with 1000 mg or less at the beginning. Megadose is for special applications, but you will google this out, if you're interested.

> I am taking folic acid, and Vit B12.  Started yesterday.  Dont notice anything so far
Well, I am also the most impatient patient ever. One of my doctors used to make fun of me saying: "But you know, patient must be patient". And so it took 5 years to reach the final diagnosis (which is probably not final anyway) and some kind of treatment.
You just can't expect anything good to happen after one day of taking vitamins...
And besides what about all these other supplements, that are suggested on the forum?
You can't know what your deficiencies are (it is even difficult or even impossible or very expensive to test for these), so the easiest way to approach this problem is to take all possible supplements, at least for some time - then after getting rid of your deficiencies you can hope that your body will manage on its own.

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I hope this answered many of your questions. If you have any more questons, don't hesitate to ask.

Regards
Bigg

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Offline ak82

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Re: Supplements and tiredness - how long before it goes away?
« Reply #6 on: August 20, 2008, 02:27:42 PM »
Wow!!  Your knowledge astounds me.  I am very impressed.  Unfortunately i have only read half of your post I INTEND TO READ IT ALL.  My mum is home today and is in and out of my room.  I dont want her to see me reading this, she thinks im hypochondriac and doesnt take my tiredness seriously :(

One thing i must say, is for years, i have had HUGE cravings for lemon.  I LOVE IT.  It goes on everything.  And i dont mean a little bit.  If i have a tin if tuna, a squeeze a whole lemon in there until its literally swimming.  I put it on toast, eggs, everything savoury, you name it.  I used to drink it with salt sometimes.  I used to come home from school, squeeze it into a plate, pour salt into it, and then dip slices of ham, then lick up the juice!!  I LOVE LEMON!!!  Its only recently that iv started to look at it as less of something i like the taste of, and now more of my body trying to tell me something!!  Sometimes, i cant eat food without lemon.  I used to buy bottles of it and have it on my desk at work.  I also crave salt alot.  I dont really know what any of this means though.  And i do have acid erosion.

I will also post my blood results when i can find them because my HB doesnt seem perticularly low.  Im 26 in 2 weeks, and my HB is 12.9.  The bottom scale of the test was 13.  My MCV and MHC are both out of range by a fair bit.  I will have to find the results!

But thanks for your lengthy post.  I will get back to reading it and reply asap.

Thanks again.

By the way, i have huge pain in my hand joints if i lift weights.  I cant do that anymore.  Or if i support my own weight with my hands, such as chin up bars.  There is huge pain and i have to rub my joints till they feel better.  It hurts so much that i dont do anything like this anymore.  My neck also hurts if i look down at my sketch pad for a long time, or i was trying to learn guitar, and looking at the fret bars where my fingers were hurt my neck a lot too.

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Offline ak82

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Re: Supplements and tiredness - how long before it goes away?
« Reply #7 on: August 21, 2008, 02:26:51 PM »
I would say i have high acidity, because i eat lots and lots of lemons, vinegar, pickles, etc.. and have very obvious acid erosion on my teeth.

I am not a vegetarian.  I eat alot of dairy and meat ( and fruit and veg and nuts ).  My metabolism has never been great.  Ive always been a little podgy (and tired).

Where could i get these ph strips from the urine that you spoke of?

i muchly appreciate your detailed response.  Unfortunately, it is too complicated for me to yet understand it all :( as i slowly learn one by one, each of the things you mention i am sure i will get it.  I will try gin seng, and also wheat greass.  next.

Unfortunately i do not know what it is that i am low on or not.  I do not even know if my symptoms are due to thal, (though i pray they are, and it isnt something else wrong with me).

I posted my blood results on another page.  Maybe these indicate something.

http://www.thalassemiapatientsandfriends.com/index.php?topic=2004.0

I am very glad to hear that your hard work has paid off for you and you are feeling better.  I hope you have much great health in the future.


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Offline Bigg

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Re: Supplements and tiredness - how long before it goes away?
« Reply #8 on: August 21, 2008, 06:21:35 PM »
> Wow!!  Your knowledge astounds me.  I am very impressed.  Unfortunately i have only read half of your post I INTEND TO READ IT ALL. 

Thanks. But there are many other things to cover.
I just remembered that when you buy ordinary vitamin C, you get two stereoisomers - L-ascorbic acid and D-ascorbic acid, the first one being real and useful vitamin, the other being useless and only increasing your iron absorbtion, and that is what thals should avoid. I did not do any thorough research on this matter, so I do not even know if you can buy pure L-ascorbic acid somewhere, but this is worth remembering.
I see the Puritan's Vitamin C label (on the bottle), and it reads "L-ascorbic acid", but this is nowhere to be found on their web site.

> My mum is home today and is in and out of my room.  I dont want her to see me reading this, she thinks im hypochondriac and doesnt take my tiredness seriously :(

This sounds like my story! And I can almost bet that your mum tells you: when I was your age, I could not allow myself to be tired, and I also did not know anyone who was tired and our life conditions were much worse than today...
I stopped caring about others' opinion long time ago. You just can't explain it to them. For example the concept of gene (this is where you should start when you want to explain beta thalassemia minor) is completely new to them, and it's new everytime you want to explain. So I don't bother anymore, I only say it's too difficult to understand without explaining for the whole day (or month if somone is really persistent  :grin). It may seem impolite or something, but it's better to be perceived impolite than hypochondriac.
I am also on some other drugs, not connected with thallasemia, and once my mother promised to buy them, and she deliberately did not. Just to prove that I don't need then and I am hypochondriac. This could have of course had very sad ending, well then she would know for sure, that she is not right.
She wouldn't probably have done that if she understood what is this all about, but she is not able to, so I just got used to it and that is all.
And if she says something to your friends or neighbours, you have to tell her that you don't want her to do that.

> Where could i get these ph strips from the urine that you spoke of?

I bought them in a drug store, when I found one that had them in stock.
You can find these for example here:
http://www.craigmedical.com/urine_diagnostics.htm
Google: urine strips

> I posted my blood results on another page.  Maybe these indicate something.

I posted the answer on another page.

B.

 

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