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My sister's dying - ideas please!
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<blockquote data-quote="Marguerite" data-source="post: 348117" data-attributes="member: 1991"><p>Good point about the source of those pills, SRL. I'll do some digging. The trouble is, where they say the pills are made, and where they really are made, may not be the same. Plus what they say is in the pills, may not be the whole story.</p><p></p><p>Sister in Port Macquarie says J was unwell when she was there just before Christmas. She has been unwell for over 6 months. Plus she was in Port Macquarie before she visited her twin - that visit to Byron Bay was in January, not October. </p><p></p><p>Our mother had bad asthma, my Port Macquarie sister is remembering how every time our mother had an allergic reaction, she had a chest response and often needed an injection of adrenalin to save her. My sister remembers having to inject mum (my sister was 15 at the time).</p><p></p><p>I found out tonight, J had a lung biopsy about three days ago. I don't know what they found, but it did cause a pneumothorax. She's had the chest drain removed this afternoon, they were hoping her lung would now stay inflated. I don't know if pneumothorax was an inevitable result of the biopsy. If it is not, I will be campaigning even harder to get her shifted to the large teaching hospital. The last thing she needed right now was to have an unnecessary collapsed lung as well.</p><p></p><p>We also believe J was taking a booster of these pills for some months because she has been unwell. </p><p></p><p>The more we talk about it, the more I think this pill business has to be kept on the table. The trouble is, the doctor says he's already considered this possibility and rejected it. We think it needs to be reconsidered. I have asked - how recently did she take the last pill? Was her husband dosing her while in hospital, in the belief that it has to be a help? What about the tube-feeding, does the supplement they're giving her contain anything that could be perpetuating an allergic reaction? Apparently not, we've been told, that question did get asked.</p><p></p><p>As I'm drafting this reply, I'm digging. I just got off the phone from Port Macquarie, my eldest sister there agrees that the pills (for whatever reason) seem the most likely suspect, if only for the timing factor. However, I'm now putting together a list of possibilities, I'm going to try and visit J tomorrow and see for myself (and find out for myself) instead of this second-hand/third-hand Chinese whispers game.</p><p></p><p>Hantavirus - I'm reading up on it now. Protein-rich oedema - I'll have to ask about the analysis of what they drained. As far as I know, her other organs are OK, other than possibly developing problems due to impending respiratory failure. Her kidneys are, I believe, OK. So it's not a generalised leaky capillary problem, which you would get in Hantavirus. However, incubation with Hantavirus is only a matter of weeks, and she's been sick, getting slowly sicker, for months. She also has had no other prodrome other than difficulty breathing.</p><p>So I don't think it's Hantavirus, specifically. It is still possible it's some other zoonotic disease, especially considering that like Africa (but perhaps to a lesser extent) Australia has some unique and still undiscovered zoonotic diseases.</p><p>That link you sent - that was referring to Hendra virus (as it's commonly called, after the town where horse trainer Vic rail lived, where he contracted the disease that link describes). That was what I was thinking about - Hendra virus is a very recent discovery, they're fairly certain it's Flying Foxes (other bats also carry diseases, scientific researchers and zookeepers are having to take a lot of precautions). There is also Lyssavirus. They keep finding more. The location for Hendra virus is geographically quite close (well within Flying Fox range) to where M's farm is. Plus Flying Foxes sometimes migrate further and join other colonies, the Port Macquarie colony could easily contain bats which once lived near Hendra.</p><p></p><p>These are still rare diseases, but her immune system could have been weakened for all sorts of reasons (including those darned pills). husband & I have often been around bats. YOu can't live and work in Sydney without some level of contact. They fly overhead, and you're of course in contact with droppings. Right in the heart of Sydney, there is a huge colony. They leave Sydney Botanic Gardens every evening (you see them rising like smoke from a fire) and I've seen them arriving to feed in the Port Jackson Fig trees at Sydney University. difficult child 3's school is a few seconds' flying time from the big colony too. So we're regularly exposed. Plus we have some here in the village now. J's place - W, who lives near her, says they see bats every night now. So if she sees them, J & her husband will see them too.</p><p></p><p>Anyway, the doctors already have the idea of bats on the table. Thank goodness.</p><p></p><p>Now, SRL, for your link on zoonoses. by the way, thank you for all this - it is exactly what I was hoping for. I was discussing this with W and PM sister both, they both have some medical training.</p><p>OK, zoonoses - for those unsure, these are diseases that people can catch that are carried by animals. Not just parasites, but other diseases such as toxoplasmosis, avian flu, swine flu.</p><p>OK, immediately I see one good point - J has been sickening for months, yet her husband is symptom-free. I think that could be a significant point.</p><p>Hendra virus in this article is being discussed - they mention that Vic Rail (don't know why that article doesn't name him) died of kidney failure, with respiratory failure. As I said, her kidneys are fine, as far as I know.</p><p>It also can be more complex than just bats - some scientists believe that Hendra virus doesn't come directly from bats, but has to be caught from a horse that has caught it from a bat. </p><p>Bats seem to be a worrying reservoir for an unknown number of zoonotic diseases. Thankfully we don't have rabies in Australia, but we do have Lyssavirus. Thankfully, this isn't Lyssa. There are no brain symptoms.</p><p></p><p>I've just been searching online for adverse reactions to "transfer factor". I'm talking about the kind from cow colostrum taken orally, not the injected human-origin TF. I can't keep searching now, I need to let difficult child 3 onto the computer to hopefully do some homework.</p><p></p><p>Something else I'm curious about - how 'legit' is the Herxheimer reaction? I suspect it is legit, but it's blown out to the point where Herxheimer reaction is being blamed for what could be genuine adverse reactions on a much broader scale. It is an easy 'cop-out' for scam companies selling highly overpriced and ineffective alternative remedies.</p><p></p><p>I'm not saying that all alternative remedies are scam - only that unfortunately, the system is rife with exploitation, which damages the reputations of genuinely helpful stuff.</p><p></p><p>I've got to go, but if I get a chance I will check back later tonight (my time). Certainly tomorrow morning before we leave.</p><p></p><p>Thanks again, guys. Keep those thinking caps on!</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 348117, member: 1991"] Good point about the source of those pills, SRL. I'll do some digging. The trouble is, where they say the pills are made, and where they really are made, may not be the same. Plus what they say is in the pills, may not be the whole story. Sister in Port Macquarie says J was unwell when she was there just before Christmas. She has been unwell for over 6 months. Plus she was in Port Macquarie before she visited her twin - that visit to Byron Bay was in January, not October. Our mother had bad asthma, my Port Macquarie sister is remembering how every time our mother had an allergic reaction, she had a chest response and often needed an injection of adrenalin to save her. My sister remembers having to inject mum (my sister was 15 at the time). I found out tonight, J had a lung biopsy about three days ago. I don't know what they found, but it did cause a pneumothorax. She's had the chest drain removed this afternoon, they were hoping her lung would now stay inflated. I don't know if pneumothorax was an inevitable result of the biopsy. If it is not, I will be campaigning even harder to get her shifted to the large teaching hospital. The last thing she needed right now was to have an unnecessary collapsed lung as well. We also believe J was taking a booster of these pills for some months because she has been unwell. The more we talk about it, the more I think this pill business has to be kept on the table. The trouble is, the doctor says he's already considered this possibility and rejected it. We think it needs to be reconsidered. I have asked - how recently did she take the last pill? Was her husband dosing her while in hospital, in the belief that it has to be a help? What about the tube-feeding, does the supplement they're giving her contain anything that could be perpetuating an allergic reaction? Apparently not, we've been told, that question did get asked. As I'm drafting this reply, I'm digging. I just got off the phone from Port Macquarie, my eldest sister there agrees that the pills (for whatever reason) seem the most likely suspect, if only for the timing factor. However, I'm now putting together a list of possibilities, I'm going to try and visit J tomorrow and see for myself (and find out for myself) instead of this second-hand/third-hand Chinese whispers game. Hantavirus - I'm reading up on it now. Protein-rich oedema - I'll have to ask about the analysis of what they drained. As far as I know, her other organs are OK, other than possibly developing problems due to impending respiratory failure. Her kidneys are, I believe, OK. So it's not a generalised leaky capillary problem, which you would get in Hantavirus. However, incubation with Hantavirus is only a matter of weeks, and she's been sick, getting slowly sicker, for months. She also has had no other prodrome other than difficulty breathing. So I don't think it's Hantavirus, specifically. It is still possible it's some other zoonotic disease, especially considering that like Africa (but perhaps to a lesser extent) Australia has some unique and still undiscovered zoonotic diseases. That link you sent - that was referring to Hendra virus (as it's commonly called, after the town where horse trainer Vic rail lived, where he contracted the disease that link describes). That was what I was thinking about - Hendra virus is a very recent discovery, they're fairly certain it's Flying Foxes (other bats also carry diseases, scientific researchers and zookeepers are having to take a lot of precautions). There is also Lyssavirus. They keep finding more. The location for Hendra virus is geographically quite close (well within Flying Fox range) to where M's farm is. Plus Flying Foxes sometimes migrate further and join other colonies, the Port Macquarie colony could easily contain bats which once lived near Hendra. These are still rare diseases, but her immune system could have been weakened for all sorts of reasons (including those darned pills). husband & I have often been around bats. YOu can't live and work in Sydney without some level of contact. They fly overhead, and you're of course in contact with droppings. Right in the heart of Sydney, there is a huge colony. They leave Sydney Botanic Gardens every evening (you see them rising like smoke from a fire) and I've seen them arriving to feed in the Port Jackson Fig trees at Sydney University. difficult child 3's school is a few seconds' flying time from the big colony too. So we're regularly exposed. Plus we have some here in the village now. J's place - W, who lives near her, says they see bats every night now. So if she sees them, J & her husband will see them too. Anyway, the doctors already have the idea of bats on the table. Thank goodness. Now, SRL, for your link on zoonoses. by the way, thank you for all this - it is exactly what I was hoping for. I was discussing this with W and PM sister both, they both have some medical training. OK, zoonoses - for those unsure, these are diseases that people can catch that are carried by animals. Not just parasites, but other diseases such as toxoplasmosis, avian flu, swine flu. OK, immediately I see one good point - J has been sickening for months, yet her husband is symptom-free. I think that could be a significant point. Hendra virus in this article is being discussed - they mention that Vic Rail (don't know why that article doesn't name him) died of kidney failure, with respiratory failure. As I said, her kidneys are fine, as far as I know. It also can be more complex than just bats - some scientists believe that Hendra virus doesn't come directly from bats, but has to be caught from a horse that has caught it from a bat. Bats seem to be a worrying reservoir for an unknown number of zoonotic diseases. Thankfully we don't have rabies in Australia, but we do have Lyssavirus. Thankfully, this isn't Lyssa. There are no brain symptoms. I've just been searching online for adverse reactions to "transfer factor". I'm talking about the kind from cow colostrum taken orally, not the injected human-origin TF. I can't keep searching now, I need to let difficult child 3 onto the computer to hopefully do some homework. Something else I'm curious about - how 'legit' is the Herxheimer reaction? I suspect it is legit, but it's blown out to the point where Herxheimer reaction is being blamed for what could be genuine adverse reactions on a much broader scale. It is an easy 'cop-out' for scam companies selling highly overpriced and ineffective alternative remedies. I'm not saying that all alternative remedies are scam - only that unfortunately, the system is rife with exploitation, which damages the reputations of genuinely helpful stuff. I've got to go, but if I get a chance I will check back later tonight (my time). Certainly tomorrow morning before we leave. Thanks again, guys. Keep those thinking caps on! Marg [/QUOTE]
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