Amino acids & heavy metals results

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Offline Manal

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Re: Amino acids & heavy metals results
« Reply #30 on: July 04, 2008, 09:34:31 PM »
Thanks Kathleen and Sharmin for your reply.

I am preparing everything these days and definetly i will send it. Sharmin, thanks i will be waiting for the information. Come home safely :hugfriend

manal

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Offline Manal

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Re: Amino acids & heavy metals results
« Reply #31 on: July 13, 2008, 03:49:46 AM »
Hi

I went to the three appointments and you will find below brief points from each visit. Andy please i need to know your opinion, feel free...

First i went to the doctor concerned with the biological treatment. I printed all the cases and told him all the concerns. At the beginning he told me that he would like first to remind me that he does not work for the company or have any sort of benefits from them so he will not be defensive but rather objective and that his relation comes from the fact that he has been dealing with their medicnes for the past 12 years and found that they have been effient more than the others in the field of alternative medicne. Second he told me that int he case study talking about the bacterial infection, the case did not prove that it has come 100% from the injection because simply this kind of bacteria can come from different sources such as contaminated food like uncooked meat, in addition to two other things that he mentioned but actually i can not recall the scientific terms. He added that not all what is written on the net is true and the biggest example on this is also another medicne ( again i can't recall the name) that is used for bronchitis and is world wide used and you can read terryfying articles about it on the net.

About the other two cases he said that the toxinity or the fever ( which he doubts could happen as the medicne is 1 over 12 million diluted ) could result from uncalculated dose. When i commented ''howcome and supposedly homupathy medicnes are safe,''.  He said that this is untrue, He said that it is wrongly known that homupathy medicnes if not beneficial they will not harm, and any thing that is taken in an excessive dose will harm even the drinking water, if you drink 10 liters for example, this will cause a strong decrease in blood pressure and a person may faint and this is just water so he stressed that any thing has its side effects but homupathy medicnes are better in this sense than chemicals in that the first is much more diluted.

When i commented that it is not known what are the ingriedents of such medicnes. he got out one of my boxes and showed me the inside pamphelet and it was written the details of the components. He said that there are doctors pamphlets which is more detailed than the consumer pamphelet and he sowed it to me. It had the same components like mine in addition to the percentage and units of eveything.

When i asked him how can a company of 40 years expierence and does not have any research about its products? actually at this question he was totally astonished and he said '' who said so??'' He answered that there are alot of research about all the activities  of this compamy and is being published every year and they issue a monthly magazine telling their updates. He said that not only this but they have an annual conference in Germany where they describ how they manufacture their medicnes and the uses and detailed research about the medicne that as a doctor i am not that interested as a pharmathutical will be. I told him that nothing of this is on their site. He said that he does not know how they mange their site and whether it is active or not but he promised to get me some of the journals that publish their research. He insisted mainly on this point and that their publications are there many years ago and they haven't missed a year.

He added that these medicnes are sold in Germany on shelf and also exported and it is impossible for the German Minster of health to ignore this matter if there is any danger. He added that again he is on the patient side because as a doctor he has a  big responsibility which is the patient health. He also gave me a number of one of the patients who has been using the medicne mentioned in the case studies for one and half years and doing very well.

So the above was his answers concerning my questions, what do you think?

He again explained that all this biological treatment is about cell repair in an attempt to have a better and more correct function. He reminded me that at the beginning he said that each body is different with a different mutation and each may have a different outcome. He still insists that when i incease the defiecnies that makes the body function well on the cellular level and thus may reflect better on thal. He insisted that it is not a must but it may. he suggested stopping this biological injection as he says that the body does no t use them so it is better to save them until we correct these deficencies through the IV fluids that have the already metabolized (ready to be absoarbed ) vitamins and minerls and amino acids. he said that one or two itms will not be corrected fast as they are water soluble and therfore the body absorbption of them is limited ( hope i understood right)

Second visit was to he endocrinologist, i told her about these deficiecy and the whole story and she commented '' again the cause or effect'' and she added that generally in Egypt we don't  do these tests but there is no harm from taking these fluids but whether the body will maintain the correct levels or not will not be known unless examines by blood tests.
Concerning the growth assement, she was satisfied by the measurments and she said that the growth rate this time is better than the last three month ( i don't get it as the last three month he was-0.9 and this assesment was -0.9 too :huh :huh) But still Ahmad is underweight but i know that this is because he plays a lot , very picky in eating and when he eats he does not eat big quantities in addition that he almost swims everyday.
She wanted me to make extra testsl ike thyroid, fasting blood sugar, phosphrous , alkalinephosphatse, calcium  and i will have te result by monday.

Third visit was to the hematologist and agian she commented that it is the first time to see the amino acids tests as we don't do them but her point is that even if we correct any thing it will not reflect as thalassemia is one of the metabolism disorders so it is like a visious circle. She did not mean to ignore them or to uncorrect them but her point is not to expect much and she told me that by the end of the year if nothing changed i should consider the hydrea immediatly .


Buy the way today i went to the eye doctor to check the effect of thal on the eyes. Ahmad eyes were good and his vision was excellent he was able to see the smallest symbols, the retina and eye pressure were normal but the doctor commented that chronic and sever anemia could over the years cause retina hemorrage ( spelling..), bilirubin ppt or increase in the number of blood vessels ( which is not good for the eyes) so an annual checkup is important .

Soooooo sorry for such a long post but i want your opinion

manal

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Offline Andy Battaglia

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Re: Amino acids & heavy metals results
« Reply #32 on: July 13, 2008, 06:11:44 PM »
Hi Manal,

In particular, I do not like this doctor's use of the irrelevant comparisons he makes. We are talking about his procedures, which have absolutely nothing to do with "not everything on the net is true" , "uncooked meat" "drinking 10 liters of water" etc. These all seem to be distraction and have nothing to do with his treatment and I question any doctor who resorts to these tactics of distraction. Yes of course, there are meds on the market that are dangerous and that has much to do with the power of the pharmaceutical companies but in no way, does this lead to any conclusion about any other treatment. Also, the conclusion of the CDC about bacterial contamination was based on case study and the infection did subside once the catheter was removed from the patient. This particular infection could not be caused from raw meat and is related only to puncture wounds (often by a thorn, but in this case, apparently related to catheter contamination). Each treatment must stand on its own and be based on its own merits. This distraction method is perhaps better suited to politics but has no place in medicine. I question why a doctor would feel it necessary to make such irrelevant comments as it seems it is just to distract from focusing on his own results.

If the company does produce annual reviews, they would be interesting, but independent reviews would be far more convincing. In the end, the proof is in the pudding and that has to be your own judgment on whether or not this treatment is causing any significant improvement in your son's health. I would also suggest that you do call this patient that he has said has improved, but first make a list of pertinent questions to ask, including what is this patient's category (minor, intermedia, major), what hemoglobin levels have been before and during treatment, has there been any transfusions, ferritin levels, and results of independent physical examinations and testing.

The endocrinologist raised the same question I did about cause and effect and I do believe there is some confusion in the biological treatment doctor's mind about the effects of thalassemia, as deficiencies are quite common among thals and are attributed to the effects of the stresses of thalassemia, and are not thought to be independent of thalassemia.

I agree completely with your hematologist. And I also believe it is urgent that proven therapies be resumed if this current treatment doesn't show some progress within the next few months.

As I mentioned in the response to your post about magnesium, supplementation with magnesium can create healthier red blood cells that survive longer and this will lead to less production of bilirubin, which is reflected in the yellowing of the eyes that many patients have reported. I think we all need to pay special attention to what Dr Vichinsky has told Sharmin about the positive effect of supplements and how the antioxidants have protected her son from iron caused damage, in spite of his high transfusion requirements. A strong program of supplementation can prove to be of high value to thalassemics and a true commitment to long term use will produce positive effects in those who comply to a thorough supplementation regimen.

Andy

All we are saying is give thals a chance.

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Offline Bigg

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Re: Amino acids & heavy metals results
« Reply #33 on: July 21, 2008, 09:35:14 PM »
For what it is worth, I will tell you about copper and zinc relationship.
There is this disease Wilson's disease.

http://en.wikipedia.org/wiki/Wilson%27s_Disease
http://en.wikipedia.org/wiki/Aceruloplasminemia
http://en.wikipedia.org/wiki/Ceruloplasmin

The symptom of this disease is higher level of copper in blood.
The other symptom is lower level of ceruloplasmin. Both of these can be measured in blood.

This is treated with zinc salts (other treatments are also available), but this is treatment of choice. So, if the blood copper level is high and zinc level is low, maybe it is just dietary deficiency of zinc? You might also want to do blood test for this disease, as there may be virtually no other symptom... On the other hand this is very rare, and the test may be quite expensive.

BTW. How much did you pay for these tests in Germany?

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Offline Manal

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Re: Amino acids & heavy metals results
« Reply #34 on: July 23, 2008, 04:10:11 AM »
Thanks Andy so much

Quote
I agree completely with your hematologist. And I also believe it is urgent that proven therapies be resumed if this current treatment doesn't show some progress within the next few months.

and that is my decesion too. Thank you for clarifying every thing  :hugfriend


Hi Bigg

Actually my son does not have any of the Wilson's symptoms ( thanks God ) but i appreciate a lot your concern.

Anyway i will be doing the zinc and copper again by the end of next month. I knew that one of the labs here has got the atomic absorption machine or device, (actually i don't know the exact name) by which copper is tested to double check.

The cost was  900 euros which is really expensive for a test compared to my local currency

manal



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Offline Bigg

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Re: Amino acids & heavy metals results
« Reply #35 on: July 23, 2008, 03:16:52 PM »
I took a closer look at the scans.
There is a question mark at "Folsäure".
There is an easy way to find out what it means and this method applies to any language and (almost) any medical term.

First we will check this at german wikipedia:
http://de.wikipedia.org/wiki/Fols%C3%A4ure

And on the left, we have links to other wikipedias - we choose English wikipedia and here we are:
http://en.wikipedia.org/wiki/Folic_acid

So, it means "folic acid"...
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Quote
The cost was  900 euros which is really expensive for a test compared to my local currency

Well, I know this pain. I had to go to Germany for Ferriscan, which did not find any significant liver iron overload now, but it had to be done anyway for future reference...
It cost 860 Euro, and here in Poland it would cost 400 Euro (ordinary scan = 200 Euro + Ferriscan data processing = 200 Euro). However, I don't know when this will be available in Poland.

I made a quick research for the test prices in Poland from the first page (circa half of all tests) and they are as follows:
Selenium              40
Zinc                  20
Manganese             50

Vitamin B1 (tiamin)   45
Vitamin B2            45

Vitamin B12           20
Vitamin B6            45
folic acid            20
Vitamin A             45
Vitamin C             ??
Vitamin E             45
Vitamin D3 (1,25-OH-D3) 25

Coenzym Q10          ??

Homocystein           15

glutation             ??
glutation- reduced    ??

Total:                      415 Euro
not including vitamin C, coenzym Q10, glutation, glutation-reduced.

So it looks like in this case the price is quite fair (but still expensive) - 415 Euro for almost half of the tests - especially that you send blood sample to one laboratory and do not have to look for other laboratories...
If I wanted to do this kind of testing, I would have to go to at least 3 different laboratories, wait for a few patients to be waiting for these tests and so on...
But nevertheless it is good to know, what you can be looking for, and that such tests can be really done, and they are not just very specialised tests, done only in research.

 

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