Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Manal on June 23, 2008, 02:25:35 AM
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Hi
Finally the results came by fax today from Germany, i scanned the results and i found that Ahmad has a defiency in many things that are really related to blood formation, liver and growth.
He has defiency in:
Cysteine
vitamin B6 - Vitamin A ( don't know howcome although he takes multivitamin daily )
glutathion (complete)
glutathion (reduced)
Coenzyme Q 10 ( low normal )
What really scares me is that he has a lot of copper :huh :huh, how did he get it, the normal range is between 40 and 170 and his result was 213.6 !!!
From a quick search on the net i found that copper aids iron absorption in the gut & damges the liver :wah :wah, how can i get rid of it???
I can see that his iron too is 122 (48-152), so is this harmful as ferritin???????????????????
I also notices that although we have been taking carnitine regularly for two years, he is just in the low normal level which is 0.5 ( normal 0.5 - 1.6 )
I don't know if the thalassemia is causing this defiency OR this deficency is worsening the Hb level since most of them are related to blood formation
In two days i will meet the doctor (biological treatment ) to give me his feedback on these results.
what do you think
manal
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Manal.
I think the copper test should be verified by a second test. It is possible that it is a false reading. Other possibilities for high serum copper are given below. It is far more common for thalassemics to have copper deficiency, so a second test should be done to verify these results if he hasn't recently had an infection etc, as listed below.
http://www.aruplab.com/guides/ug/tests/0020096.jsp If you look at the table at this site, you will see that for a male under 18 years, the high end of normal for copper is 190, so his level is not severely high.
Serum copper may be elevated with infection, inflammation, stress, copper supplementation, oral contraceptives, and pregnancy. Concentrations are 2-3 times normal in the third trimester of pregnancy. Copper may be lowered with corticosteroids, zinc, malnutrition, and malabsorption.
Note:
Elevated results from noncertified trace element-free tubes may be due to contamination. Elevated concentrations of trace elements in serum should be confirmed with a second specimen collected in a trace element-free tube, such as royal blue sterile tube (no additive).
His zinc level is on the low side of normal. This is just one possibility but is worth a mention. There is a zinc/vitamin A connection in some vitamin A deficiencies. (I have noted this in myself). Zinc is also implicated in growth retardation. A high nutrient diet has been shown to increase growth in thalassemics, although with children, this can be difficult because they can be such picky eaters.
His iron level is not bad at all, especially considering he is intermedia and intermedias often have excess iron absorption in the gut. Being in the normal range is good news.
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Manal,
Please be strong. I hope that these issues get settled easily.
I pray Almighty that he gets well soon :pray
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Manal,
I hope that your doctor has a good explanation for all of these results. I also hope that appropriate levels can be reached easily - I'm sure that will increase his hg as well. I wish little Ahmad the best. My prayers are with you :pray
Sharmin :hugfriend
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Sajid and Sharmin , thanks alot for your support and wishes :hugfriend :hugfriend
1- Andy, i will do another copper test as you mentioned, but concerning the defiencies of B6, Vitamin A, and low zinc and low carnitine.... i am giving him the right dose for his age daily, should i increase the dose or what should i be doing ??? i really can not depend on the food only, its impossible :(
2- We are all usually concerned with the ferritin levels, should other iron tests like serum iron , saturation, TIBC, transferrin,... have the same concern??
3- Does being a thal is the reason for such depletion, meaning that no matter he takes supplements he will always have defiency or these can be elevated and thus affecting the HB levels positivly???
Thanks
manal
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Manal,
Thalassemia causes great stress on the body. I have mentioned this in previous posts concerning vitamin E and folic acid. Because of this, the vast majority of thals find themselves deficient in many vitamins and minerals. Thals cannot go by the standard dosage for non thals. I don not advocate mega doses of B vitamins but increasing the dose beyond what a non thal needs is prudent. I take Puritan's B-100 complex. It gives a high dose of the important B vitamins without going overboard like some B supplements do. Increasing his zinc supplement may help his vitamin A levels. Is he taking a vitamin A supplement, and if so, what is he taking?
The serum ferritin test is the most common test done to test iron levels. Adding the full iron studies should be done if the ferritin level raises any concern, but they are not routinely done as it adds to the costs. The full iron studies panel is actually of more use in diagnosing iron deficiency. If his ferritin levels stay within range, the added tests are probably not needed.
It should always be remembered that thals are under great internal stresses which deplete nutrients. These nutrients do need to be replaced and normal levels should be maintained to increase quality of life along with health.
I am very happy to see his vitamin D level at such a good level. A daily dose of sunshine is very helpful in maintaining proper levels, and makes a huge difference in energy levels.
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Thanks Andy for your reply
Unfortunatly the serum copper testi is not done here in Egypt and i was astonished to know that even all the vitamins except B12 are not done too. So to check it again i have to send it again to Germany :mad :mad
As for Vitamin A, he used to take the kiddie pharmaton then i switched for the yummi bears
( vitamin A 2500 I.U which is 50% of the daily value ) from a year ago because the first one does not have any minerals like the yummi bears. Last year the hematologist used to give him an extra pill (3 days a week) of Vitamin A&E. Each capsule had vitamin A 30000 I.U and vitamin E 70mg. At that time i was so afraid from too much vitamin A as it is fat soluble, so i requested only to have the Vitamin E pill alone (400mg). So do you think i should be giving him the Vitamin A&E pill again with the yummi bears as his vitamin A level is too far below normal??
manal
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Manal
I wish you get your answers soon. Let us know the opinion of the doctor. Wish Ahmad the best.
My prayers are with you and Ahmad.
Jade
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Manal,
I also hope that you get your answers soon and that you receive some reassurance that everything is okay. All the best to little Ahmad.
Sharmin
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Manal,
I think you can safely double that dose of vitamin A to 5000 IU daily. However, adding a zinc supplement might also increase the A. I would try zinc first. 20-25 mg daily.
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Thank you Jade and Sharmin and definetly i will update you once i meet the doctor :hugfriend
Thanks Andy i will increase the dose. One thing came up to my mind, could the reason for these deficencies (aside from fast depletion due to thal ) is that the body of thals can not ''see'' these vitamins or i can say insensitive to them and therefore does not have the ability to fully absoarb them. I remember that once we talked about growth hormones and though they could be in normal levels but thals bodies are insensitive to them, so could it be the same in Vitamins??
One more thing i read about Coenzyme Q 10 ( as Ahmad is in the low normal ) and found very interesting facts that could be beneficial to all thal
http://www.cholesterol-and-health.com/Coenzyme-Q10.html
http://faculty.washington.edu/ely/coenzq10.html
http://www.healthy.net/scr/article.asp?Id=534
As an antioxidant, it appears to help correct dietary deficiency of vitamin E in animal models, protects against the toxic effects of adriamycin, protects against low oxygen states which results in large amounts of free radical formation and reduce oxidative distress that often results from surgery.
http://www.thenutritionreporter.com/coenzymeq10.html
Sajid, this could be interesting...
Coenzyme Q10 and diabetes - Coenzyme Q10 supplements may improve heart health and blood sugar and help manage high cholesterol and high blood pressure in individuals with diabetes. Coenzyme Q10 has antioxidant activity in mitochondria and cellular membranes, protecting against peroxidation of lipid membranes. Coenzyme Q10 inhibits the oxidation of LDL-cholesterol. LDL-cholesterol oxidation is believed to play a significant role in the pathogenesis of atherosclerosis. People with type 2 (adult onset) diabetes have been found to have significantly lower blood levels of coenzyme Q10 compared with healthy people. People with diabetes cannot adequately process carbohydrates. Coenzyme Q10, or CoQ10, is needed for normal carbohydrate metabolism. Coenzyme Q10 is an antioxidant that fights free-radical damage and is a blood oxygenator.
http://www.vitamins-supplements.org/coenzyme-Q10.php
manal
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Thanks for the info Manal,
My Diab. Doctor first wrote Type-I diabetes in my diagnosis but on the next visit changed it to "Insulin Dependent Diabetes" I guess he changed his mind after the pill trial :biggrin
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Hi
Finally i met the doctor, he commented that all what Ahmad has defiency in causes anemia to normal persons and that is why he thinks that these affect the thal negatively. In addition to the high depletion of these vitamins, minerals,..... the doctor added that sometimes the thal patient body due to imbalnce of many amino acids and enzymes does not undergo the complete metabolism process and therefore can not make use of the vitamins taken.
He explained for example that when the he takes a vitamin A pill, the body needs to breakdown it to the simplest form in order to absoarb it and make use of it, but since the metabolism process may not be complete, the body can not make use of it leading to defiency. He didn't agree to increase his dose as he said that his body will not use them and will be stored as toxins in the liver.
After consulting with the hospital in Germany, he is going to give Ahmad all the substances that he lacks in the form of injections and solutions in the simlpest form, so the body does not need to metabolize them i.e the body will just make use of what is given without the need to break them down.
He said that this correction is not related to thal but correcting these body levels will reflect positivly on thal and make the body recognize the biological treatment he has been taking .
When i asked him if Ahmad will maintain normal levels after this correction or not, he answered that this may happen but not a gurantee and the only way to know is to make the heavy metals and amino acids test annually. ( which is a super expensive test :mad :mad)
He also added that copper is very tricky as the deficency in copper leads to anemia by inhibiting the formation of red bloods cells in the first place and the increase in copper (Ahmad's case) leads to the quick breakdown of red blood cells after formation(hemolysis) also leading to anemia.
One of the things he will add to Ahmad is the coenzyme Q 10 on which he strongly insisted on its importance. He also commented that the glutathion (complete) &glutathion (reduced) are very important in the blood formation in the liver and all the liver functions and that they work as coenzymes in other enzymes related to growth.
he said that we will do another test to check his levels again. The injections and the solutions will arrive here by the 20th of July. The Hospital of germany suggested that i bring Ahmad there in order to assist his body (in addition to his treatment) by different methods like using bioresonance, energy..... and other techniques which i really forgot their names but actually we can't for financial reasons.
Nothing i can do but to wait and see but i am really so depressed as now i am dealing with these defiencies in addition to thal. thal is more than enough for me especially that i really believe that these defiencies may be worsening his thal and i am afraid that it could be a permenant problem
manal
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Hi Manal,
I sympathize you. Thal. Inter. is indeed very tricky to tackle. I know you are doing the best you can to make his body make it's own blood.
I pray that you succeed in your struggle and make Ahmed avoid pain as much as possible.
:pray
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Thank you Sajid for your concern and support. I am praying for that too
manal
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Hi Manal.....
You and Ahmed are in my heart and prayers. :hugfriend....I wish I had words for you or advice....but I don't even have them for myself :wah. All I can say and Im sure many other friends who are facing Thal. can say is I know how you feel and you are not alone. :hugfriend
Kathleen...
ALso...Olivia had her appointment 6/30 it has been one month since her tx and her hb was a 8.7 2 weeks ago her hb was a 9.8. The drs don't want her to get below and 8. Is this normal? Should we be trying to get her hb to a 10?
Thanks Kathleen
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I don't know how much longer I can continue to hold my tongue on this topic. I do believe Manal is being taken advantage of and also believe she will soon be approached for even more funds to correct these deficiencies, which are fairly common in thals and normally correctable, and are no cause for alarm. I do not believe that any of the deficiencies are unrelated to thal. The fact that this doctor has so alarmed Manal is very disturbing to me. I see no evidence at all that this doctor knows a single thing about thalassemia.
I actually prepared a very lengthy post on this topic but have not posted as I do not intend to cause Manal any offense. If Manal wishes to see my opinion on this I will agree to post it.
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Dear Kathleen
Thank you so much for your prayers.... i really need them :hugfriend. I hope that Olivia would maintain her hb , but what is the opinion of her doctor concerning the re-use of hydrea by increasing the dose? Also what is his explaination that the hydrea was not working for her lately?
Please Kathleen keep us updated.
Dear Andy
Definetly i want to know your opinion. But how could you think that whatever you say will offend me. Your opinion is sooooooo important to me to the extent that when i write any post and i don't have your feedback, i actually don't feel comfortable. Though we have never seen each other, but i swear to God that i have endless trust in you in whatever you say. I know that you care about us all and that you are dedicated to our cause.
Actually i need your opinion because these days, everything is messed up in my mind. It is one of the hardest times of my life. It has been two years since my son was diagnoised and i did nothing for him, i can not help him raise his Hb. In two months he will be 6 and time is running and i know that his low Hb won't help him even if his body got used to it.
Same time i can not see that this biological treatment is helping him as expected at least in the hematological part. Maybe it did in the growth or immunity but this is not our problem. I do believe it is important to correct this defiency but will it reflect on the HB???I don't know. Sometimes i say enough giving my son all these injections (82 till now) and some other times i say finish this experment till the end, especially what is concerned with the deficienies because i am already giving him an overdose of all the multivitamins and they seem not enough.
What makes it really hard for me is that from the first day he was diagnoised i was living waitng for something to happen and this was giving me hope. This hope was distracting my mind from the idea of having ''thalassemia''. First i was waiting for the big bunch of multivitamis then resveratrol, aloe vera, then wheatgrass, hydrea, biological treatment, now carao.......... All this hoping and waiting and it is really hard to wait,i am now suffering from body aches on the day we make the CBC because i am always faced with a chain of disappointement. What's next, shall i continue ( till now i did not pay the doctor any thing expcept the price of the medicnes and i checked that they are the same prices as being sold in Germany) or shall i go back to the hydrea?? What shall i do, i can not survive like this waiting for nothing , i have to have hope in any coming thing?? I don't want to be faced with blood transfusion, it is NOT safe here. I am living the worest time in my life.
Again Andy i want you to know that i am never offended from anyone in this site, especially YOU ,We all feel for each other more than our real families. i will be waiting for you opinion :hugfriend
manal
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Hi Manal......
After reading your post I felt like I was writing it. This is why my posts have been so breif as I cannot get my thoughts together. :hugfriend
That was a good question regarding the hydroxyurea...if they felt it was not doing much for her before, why would it now......I will find out. I feel like I need to keep her as healthy as possible and will do whatever it takes...I am so sorry that the quality of blood is so poor by you...I can see why you want to avoid it at all costs. I know some people here in the US have direct donors ( I think that is what it is called) is that a possibility for you? I hope so.
Take care of youself Manal ( I know it is hard to do so ) for yourself and your family.
Kathleen
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Kathleen,
I was bothered that hydroxyurea was discontinued so quickly with Olivia. Hb often drops in response to infection and should not result in a knee jerk reaction. It can take several months to return to normal after an infection and I don't see any reason to stop suddenly, especially since long term studies have shown that the maximum effect of hydroxyurea is not realized until the second and third year of use. These studies have been done outside the US and perhaps our doctors are not aware of them or do not give them enough credibility. If at all possible, find a qualified doctor who has much experience administering hydroxyurea to thalassemia patients and get a second opinion. It may be that Olivia is not one who will respond well enough to hydroxy but until now it has seemed to be maintaining her Hb level at a higher rate than lately, so another explanation such as infection may be responsible.
Perhaps a consultation with the Comprehensive centers in either Los Angeles or Oakland can give you a more conclusive answer.
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Manal,
Thank you for your kind words. At times I feel that maybe I am trying to be too protective, especially when I see parents alarmed and upset by what they have been told. Sometimes it's simply a matter of a doctor having poor "bedside manner" and not understanding how to explain things in ways that do not upset parents and patients, and sometimes doctors talk about things of which they know little. You can take my words with a grain of salt if you wish because you have spoken to this doctor and have a better idea of his level of expertise regarding thalassemia than I do, but some of the things he has said have left me very skeptical. I consulted with a couple other members of this group about this and thank them for their counsel, but I do realize that I may be the only person here who may understand some of these complex issues (and I thank God for an unusual capacity to understand almost any subject I have ever encountered and for the good fortune to have passed this on to my children. I realize there are some who think because I do not work in the medical field that it means I have no knowledge and we did have a minor leave our group immediately upon finding that I am not a medical professional, but when I spoke to Drs Lucarelli and Sadoni in Dubai and saw their immediate acceptance of me because they were familiar with my work because of Khalifa, I did realize that if the top bone marrow transplant specialists in the world were willing to accept me, that I can't let it bother me when anyone feels I need to be a doctor to understand thalassemia). I go back to Gabri's post early on this subject and wish she was around right now because I have found her to be very knowledgeable about thalassemia and its treatment, but I will remind you that early on she said she lives in Germany and thought that if this treatment did what they claimed, that German patients should be aware of it and are not.
So here is the post I wrote on Saturday.
I cannot agree with this doctor. He is beginning to sound too much like the fake hakims like Ghulam, who confuse cause and effect. I believe all of your son's deficiencies are related to thalassemia and are not some seperate condition from thal. I also am extremely skeptical of the high copper reading and think it is most likely due to contamination by the tube the blood was in. Very simply, the physical stresses of thalassemia, especially excessive hemolysis which causes the destruction of red blood cells, depletes vitamins and minerals from the body. These have to be replaced. If your son's diet gives him an adequate intake of vitamin A, then you must look elsewhere for an explanation, and typically this will be found in inadequate zinc supplementation and/or poor liver function. Slow thyroid can also come into play.
For a long time I have been fairly quiet about this treatment and now I feel I should have spoken up sooner. I do not believe that injecting animal extracts into your body can do anything other than expose one to bacteria ( http://www.cdc.gov/ncidod/eid/vol7no6/carey.htm ) and other contaminants and empty one's wallet. There are no 4 steps to creating hemoglobin. Hemoglobin is created by equal amounts of alpha and beta globins forming together to create hemoglobin. If one or more of the genes responsible for production of these globins is defective, the result is alpha or beta thalassemia of different degrees depending on how many and how severely mutated or deleted the genes are. Although many beta thalassemia are the result of a substitution of one amino acid with another in the gene, ingesting or injecting the missing amino acids will not change one's DNA nor the instructions in the DNA that are responsible for the creation of these genes. Even gene therapy does not hope to change the gene one is born with but rather supply enough copies of a good gene that can create beta globin to make up for the inefficiency of the gene one has from birth. The beta hemoglobins are actually caused by a wide range of mutations, substitutions and deletions in the beta gene and the idea that these genetic faults can all be corrected by taking bovine gland extract doesn't make scientific sense. This is why so much research is in the area of reactivating the gamma gene to resume production of the gamma part of fetal hemoglobin, rather than trying to produce more beta globin.
Most of the information available about Vitorgan is what has been supplied by the company itself, similar to the case with Dr Mathur, and this bothers me because there is no credible confirmation of any of the claims this company makes. However, there is a German report about Vitorgan's product called NeyTumorin, which purportedly can cure cancer, at http://www.ncbi.nlm.nih.gov/pubmed/9244964
Allewelt MC, Hauser SP.
Studiengruppe Methoden mit unbewiesener Wirksamkeit in der Onkologie, Schweizerische Krebsliga, Bern.
NeyTumorin is a combination of peptides and proteins of 15 different organs from fetal and young pigs and cows. The list of indications ranges from cancer prevention to long-term treatment of malignancies. One vial of NeyTumorin-Sol costs DM 122.34. The therapy for a patient with a T1-2N0M0 cancer costs about DM 16,500 and an advanced stage up to over DM 100,000. The inventor of the Cytoplasmatic Therapy is K.E. Theurer. About 40 years ago, he founded the Vitorgan-Pharmaceutical Company which produces and distributes NeyTumorin. It is claimed that "physiological repair aids" from the cytoplasm of healthy animal organs induce a "hygiogenization" of the disturbed metabolism and NeyTumorin has immunogenic and immuno-modulatory effects which are important for the efficacy. The promotors classify NeyTumorin as a biological response modifier. The components of NeyTumorin are not defined. Preclinical investigations showing direct cytostatic and immunomodulatory effects are not sufficiently documented. Often extremely high concentrations of NeyTumorin were used. Clinical studies including prospective randomized trials are not conclusive because of false or insufficient documentation. There is no proof for either the claimed mechanism of action nor for a clinical efficacy.
PMID: 9244964 [PubMed - indexed for MEDLINE]
Unscrupulous practitioners take advantage of the normal fears and anxiety of patients and parents to enrich themselves. Creating great anxiety is a tool to manipulate people into investing even more money into questionable "cures". Manal, when I see the anxiety that this doctor has caused you I feel I must at the very least express my views on this. I doubt you can find a single thalassemia specialist on earth that would recommend this treatment. This doctor's claims about about politics and economies is pure nonsense when it comes to thalassemia. The top doctors in the field, such as Wood, Porter, Piga, Cohen, Vichinsky et al are among the most dedicated doctors in any field. The thought that these doctors would ignore any effective treatment is absurd. I feel that this doctor is most likely setting you up for his next expensive "therapy", which he will tell you will correct these deficiencies, which can most likely be corrected with supplementation. As I mentioned earlier, a vitamin A deficiency may actually be the result of inadequate zinc intake. I don't want to see you invest more money in therapy that will most likely lead nowhere and keep you from pursuing proper treatment for your son. I do feel that a longer trial of hydroxyurea along with wheatgrass and resveratrol would probably have a much more positive effect than this current direction. A much better investment would be a consultation at a Comprehensive Care center in the US, where you would be able to get an accurate prognosis for your son and have a treatment program designed based on your son's particular needs.
It is one thing to blame the system for a therapy not being known, but it altogether another, to NOT be able to back up your claims with data, which this doctor has never done. If this worked, he would be able to show you case studies rather than make claims about unknown patients in Bahrain. If this worked, he would have patients giving testimonials. If any therapy worked, patients would be jumping up and down with the news. There is a good track record for hydroxyurea working for many patients with long term use. For those in which it does work, there is evidence that long term therapy over 2-3 years produces much better results than what is seen in the first year. This is real and studies have found this to be true. This doctor and the company he works for have never produced any study to show that their products work. After 40 years this is incredulous. By now they should have a long record of success if their products worked as claimed but they do not. I feel they take advantage of cancer patients and now patients with thalassemia. Their lack of data to back their claims up is astounding after their long history of doing business. My opinion is this is intentional as to make sure they are not supplying the data that would prove their claims to be false.
Please take some time to relax and organize your thoughts in an objective manner. I am disgusted by this doctor causing of alarm and anxiety in you but these are the tools that are used to convince even the most intelligent, because fear can erase rational thinking when one has been properly manipulated. Instead of being alarmed at what this doctor has told you, you should be alarmed at what was found in the article above about false documentation being provided. At the very least, please consult with a thalassemia specialist and not just any hematologist and see what is thought of this therapy and if if the specialist thinks there is any possibility that it could work.
Manal, I have an immense respect for you and your intelligence and as I said, I do not wish you to take any offense and am sure you understand that I am only asking you to look out for your son's best interests. I do realize how difficult it is when the diagnosis is intermedia and a more borderline case may not exist in terms of whether or not to transfuse. Because of this, I would highly recommend a consultation with a top specialist just as I recommended for Sharmin's son. I would also ask you to refrain from making any decision until we hear from Sharmin and she can give her analysis of what she thinks of what Dr Vichinsky has to say about her son. If Dr Vichinsky proves to be everything I believe him to be, I would suggest you waste no time in contacting a true specialist in the field and make sure it is one with a vast experience treating intermedias and not just majors. There are some therapies that may prove to be of help to intermedias especially and I do think that some of these are worth a try as long as your son's Hb can be maintained above 7.
And to everyone, there are excellent specialists in the field of thalassemia and I recommend them very highly as they are the true experts and they are doing a wonderful job with their patients.
I really have struggled with whether or not to post here and largely this is because this company has been so incredibly vague about their processes and the claims they make, and also because I feel I may be overstepping. It is very hard to pin anything down, but this does lead me to question their credibility.
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For the past two hours i have been reading your post several times. I am very alarmed with what they found about this NeyTumorin!!!!!!!! Knowing that those products can be purchased online or over the counter made me think that all the way they are safe or at least if there is no benefit, there would be no harm.
Andy you make a lot of sense . I will follow your advice and wait for sharmin and it is true i need to relax and definetly something has to be done.
There are some therapies that may prove to be of help to intermedias especially and I do think that some of these are worth a try as long as your son's Hb can be maintained above 7.
Do you mean other things other than the hydrea?????????
Andy , no words can describ how grateful i am to you, i am not offended at all . My family is blessed to have you in our life. thank you
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Hi Manal
I can feel your confusion. When I started Hassan on homeo medicines I had really tried to learn about homeopathy. One pharmacist(homeo) had warned me to be careful and to find if the doc I was dealing with was genuine. When I told him if my son would not benifit from the meds it would also not cause him any harm. He said it was a wrong notion, if the potencies of these medicines are not calculated carefully they can have very serious side effects ranging from kidney stones, bladder stones to tumours and by the time the patient learns about this he probably is longer on the meds and does not relate it to homeopathy.
Manal, Bahrain is just an hours drive from here.If your doc can give the address of the cured brothers we can probably find a way to meet and talk to them.
Take care
maha
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Manal,
I am talking of a combination of hydroxyurea, wheatgrass, resveratrol, carao and any other natural Hb inducers. I think that using the combination will produce better results than just hydroxyurea alone. I have also posted previously about a study that showed hydroxyurea was boosted by the use of homeopathic meds along with it.
One other thing I want to mention about seeing a specialist is so your son can have a thorough physical examination. This can help greatly in determining whether or not transfusion will be recommended. If his growth and physical development is adequate in the eyes of a specialist familiar with intermedia, then continuing to treat him without transfusion is warranted.
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Hi Manal,
I really feel for you.Please do as Andy advises.Ahmed is in my prayers. :pray. Don't worry, everything will be fine.May GOD bless you all.
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Hi Manal,
I hope our dear Ahmad is doing well. I will get back to you as soon as we see the doctor. My thoughts and prayers are with you. I hope that his hg increases without the need for transfusions. Something good will happen soon - I'll see what I can find out. Take care my friend.
Love Sharmin :hugfriend :hugfriend
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Thank so much Sah and Sharmin for your concern :hugfriend
manal
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Andy i made three appointments on Saturday with an endocrinolgist familiar with thal, hematologist (thal) and the biological treatment doctor and i will let you know what each will say.
I will prepare a file of my son and send it too to Dr. Vichinsky though i am sure that he would be busy to answer back but i will give it a try
I will get back to you. Thanks foe being there
manal
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Manal,
Please send his file to Dr vichinsky...I feel they will get back to you and can be of great help.
Kathleen
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Hi Manal,
I also think you should send his file to Dr. Vichinsky. I have more info for you - I will be in touch in a couple of days. There are effective and less toxic ways to induce hg - I will get more info to you as soon as possible.
I also have info for antibodies - which I will begin posting once I get home.
Take care,
love,
Sharmin
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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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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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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.
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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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Thanks Andy so much
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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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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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.