Hi Andy and everyone else,
Thank you all so much for replying so quickly to my posts! Andy, I get treated at Lucile Packard Children’s Hospital at Stanford. I have visited both Oakland Children’s and LA Children’s. I know of Dr. Vichinsky and his expertise in Thal and its research, but I have never gotten a pleasure of meeting him. I have been to CHLA once for EDICT study and OCH for SQUID, twice. So, I’ve had measurements made by both Squid and T2*. My first T2* (three years ago) was 11 (moderate risk) and now this year, it was 9 (high risk) in the heart (done at two different hospitals, though, first at CHLA and 2nd at LPCH @ Stanford). Liver iron has been higher than the heart but I don’t recall exact numbers.
I have actually never been to OCH for a comprehensive annual exam (as recommended by Cooley’s Anemia Foundation), which I have been wanting to get done for the last year or so now. The reason is that the Hematologist(s) at LPCH say(s) that Packard (LPCH) is part of comprehensive centers through Oakland. I still don’t believe so as we’re missing so much that OCH and LACH do as part of the COMPREHENSIVE exam. Yes, I do get regular screening done, but no doc looks at all results as whole. In my opinion, I have undergone too much irradiation, including x-rays, CT, DEXA, etc, in the last year or so without any benefit. So, I agree with you Andy.. I also don’t feel that even American docs know everything. The other major point to mention is that we don’t have many adults at LPCH as OCH does, so, docs at LPCH are still learning on us what the thal adult issues maybe, and believe me, thal kids’ and adults’ issues can be very different. I didn’t even feel much anemic or sick until I hit 23 or so. Perhaps that’s the reason, I have not been very aggressive with my care until like this year (25 yrs of age). I also wasn’t aware of HepC until like 3 years back and it took me some time to admit that I have it after different blood tests all confirmed it. It’s so sad to know that our treatment (blood transfusions) can also bring about many other complications and even unexpected Hepatitis. I actually work for Roche Diagnostics and am working with teams developing blood screening and viral quantitation assays. The more I learn about the processes the more nervous I feel sometimes, lol. Overall, definitely, screening has come a long ways.. it used to be not that sensitive even in the 80s and 90s, and that’s probably when I got infected, too. And like you mentioned, Andy, even a small chance is still a chance. But we really can’t escape transfusions.
And yes, unlike most Americans, I try not to take meds unless I have to. This is why I have been avoiding HepC treatment with interferon/ribavrin for almost a year now (especially cuz of depression and other nasty side effects it can cause and requirement of going into the clinic all that often to administer the drug). The other reason being Biopsy.. Hepatologist wants a baseline screening of fibrosis (if any) prior to starting the treatment. I also don’t like to undergo invasive procedures until there’s a solid reason to do so. Now, you can imagine how thankful and happy I would be having found what nigella and milk thistle can do for me. I do also believe in treating diseases with natural solutions (especially Islamically known treatments). So, my question is even if the titer for HepC in my blood was very high, I have a possibility of completely getting rid or it? Or these herbs would just manage or lower the viral load?
What I plan on doing is now that we already have a baseline viral load for HepC, I will continue on Nigella (which I already started on yesterday! – thanks to posts on this forum), and show the miracle of it to my docs by proving in bringing my viral load down, and perhaps just to prove further, also getting a biopsy after the course of nigella. How long you think it might take for this herb to work? Should I also start on Milk Thistle at the same time?
I actually did take Nigella seeds empty stomach, yesterday – and hence the burning sensation?? I took about 11 seeds, should I increase the number to half a tsp ground Nigella? I do plan on crushing the seeds to make a powder and mixing it with honey in a bottle the way Ambareen did. I think this will help get rid of burning sensation. I am just waiting to go get fresh Nigella (kalongi) and honey tomorrow or the day after.
Btw, I’m good at math and I love proving things ;) so, this may also be an interesting project for me ;)
Like I mentioned, I took some time reviewing the different threads before I joined the forum and the reason for me joining this group was that I found things other than what American docs have been telling me – the possible herbal treatments for some of the stuff I already face. I would definitely be happy if the herbs can do the trick for me and I don’t have to undergo nasty chemical drugs to get to the same or even better results. I especially won’t be able to deal with Interferon as I work full-time and whenever I think of receiving that treatment I also think that I would have to take 6 months out of my life to undergo this without the comfort of knowing that it’ll work for me, and I probably can’t afford to do that, mentally and socially. My Hepatologist already told me that I only have about 40-50% chance, at max, of these drugs working on me. I would also have to take two of the drugs together… not something I could imagine myself undergoing.
Does Colostrum come from Bovine’s first milk? I’m just wondering if it’s Halal (permissible in Islam)? I know a couple of Muslim thal friends on this forum are taking it so, I assume it would be halal…
I really hope I didn’t come out offensive to anyone, on this posting of mine. I’ve just been feeling a bit frustrated and am trying to figure things out for me. Also, like I mentioned in my earlier posts, I really don’t feel I had anyone to discuss these things with, before. I only go to the hospital to get my appointments done and actually get transfused on Saturdays and get out of there as soon as I can. I don’t know any thal major patients (especially adults) at my center. I have come to know a couple of beta thal patients at Oakland Children’s in the last 2 years (thanks to Laurice – thal patient and outreach coordinator at OCH) and have been very thankful for that. And that’s where I started discovering that there’s much more to the thal treatment and wellbeing than what I have known at LPCH (where mostly, thal kids are treated that don’t usually have many issues). I really hope I can make my way to OCH sometime this spring/summer, and this time, not for any research study but for a COMPREHENSIVE evaluation!! I do acknowledge and thank Allah that I have been blessed with so many good resources around me for my care, here in California, but now, I also pray that I will be able to take advantage of these resources, more effectively. I also have to admit that I have been kinda lazy and have been putting off some of the treatments up until this year (not that I have not been chelating at all. I have had intervals of good and poor chelation times). I am now marking the days I chelate on a calendar which is ACTUALLY helping me feel happy about days I have chelated and encourages me to do even more. It’s also a reminder of the days I have missed and have not gotten a check mark for ;) I have gone from 2, to 3, to 4, days a week of chelation now, in just 2-3 months. I plan on going to 5 times a week very soon. I actually used to have a port and PICC lines before and SubQ has always been very difficult for me to manage. I have tried Exjade, Andy, but have not liked it at all. I have not only experienced side effects but it also has not worked for me. My Ferritin went from about 4000 to 7800 during almost 6 months of being on Exjade (~25mg/kg – which is actually prettly good dosage). My hematologist does not agree with me on this… he still thinks Exjade worked on me or could work on me… this is one topic that totally frustrates me… I have so many numbers to prove that Exjade did not work on me (ferritin and T2*) and he still has been pushing me to go on it again. This is why now I’m going to finally (insha-Allah – God willingly) bring the ferritin down with Desferal to prove that I do DO Desferal and it WORKS!! Even though I have to be put up with the SubQ torture as I no longer have a central line… my Ferritin now is in 5-6000 range. Could you guys PLEASE help me stay on top of my chelation by periodically asking me my ferritin and days I’m chelating (I won’t lie to you =) I don’t like my docs asking me… ;)
Extremely sorry for this really long posting…. I just had to get it all out at once ;) So, now you know where I’m coming from..
Once again, thanks, and best regards,
SF