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/9244964Allewelt 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.