Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 , If you e-mail the Irish drug company that makes isoprinosine, at info@... ask for their " Physician's Kit " to be sent to you and/or your doctor. It's quite comprehensive and has information about how to order it. It comes to about $170 for three months, including shipping. Thanks everyone for responding to my request for information. I guess I'll take it day to day. As I said, I've developed a huge sleeping disorder that started as a side effect to Neurontin, but is independent of my taking Neurontin now. But most nights I have non-restorative sleep, which is worse than not sleeping. Anyway, when I'm feeling massively sleep deprived that seems to trump other symptoms. So it's been on the days when I've gotten " quality " sleep that I've felt what I think are herx reactions. I have had -- in the past -- high antibody titres to EBV, CMV, HHV-6, but I can't afford right now to do more testing. My NK activity was low when I first became ill ten years ago, but when last tested -- seven years ago - it was normal. So, if the herxing isn't too bad I'll base by assessment of isoprinosine on how I feel, and give it at least six months. If anyone has any ideas about Sleep -- well, I think I've tried everything; certainly every sedating med in the PDR and some that aren't in it; I've done sleep labs; herbs. . . I've taken drugs that would put people to sleep for 24 hours and I can't get past 5 or 6 (I now need 9); so I'm taking doxepin at night (I can take 300mg and still not sleep through the night!) -- my doc had me add lose dose lithium, too -- and in the middle of the night a cocktail of xanax and klonopin, and sometimes imovane -- an hypnotic available in Canada. . . but they're not working very well anymore. I actually think that overall my health is somewhat better, but it's being obscured my this constant state of sleep deprivation. I " m feeling rather desparate about lately. I don't know if it's essetially a drug caused problem or whether it's now the CFIDS sleep symptom -- the first few years of my illness I actually slept better than before I became ill. michael > > > Carol, > > I'm new to this list, but would be very much interested in getting a copy > of the sample prescription and cover letter. Any other information that > you have on Isoprinosine would be greatly appreciated. > > Thank you, > > > > , you asked about Isoprinosine. I've been on it over a year - > since November 2000. No side effects, no herx, and no immediate difference > in how I felt, but my NK function returned to normal, and gradually the > viral stuff seemed to go away. My HHV panel went from positive (HHV 7) to > negative. And I stopped running the low-grade fever I'd had most of the > time since 1996. > > Some in our local group who had significant viral loads (mine were pretty > moderate to low) did have the herx problem. > > As always, stop if it's really bad, then resume at half the dose. In this > case that means 3 a day for week one, 1 a day for week two, none on > weekends, and of course two months on and one month off. If herxing is > still a problem, stop again, and when you're ready to resume buy a pill > cutter at the pharmacy!! > > For any who are interested, I have the info a local doc needs to > prescribe this ready to send out easily as an attachment. It's an example > prescription and cover letter. Precise wording required for customs. > Actually very easy to do and perfectly legal. Though not approved by the > FDA, a three month supply for personal use - with a prescription - is > absolutely legal. > > Take care. Carol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 > I actually think that overall my health is somewhat better, but it's > being obscured my this constant state of sleep deprivation. I " m feeling > rather desparate about lately. I don't know if it's essetially a drug caused > problem or whether it's now the CFIDS sleep symptom -- the first few years of > my illness I actually slept better than before I became ill. > > michael I've had CFS for 10 years and insomnia was never a problem for the first 9 years, I slept very well. My overall health has improved also but I've had a few episodes of awakefulness in the last year but since last November I've completely lost the ability to fall asleep, I don't take other meds so I'm assuming this is the progression of the illness. Thank goodness Trazadone works for me. I wish you well and hope you find a solution soon. Nat > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 , Your sleep disturbances are very similar to mine that I was told is classical of ME/CFS, that is it starts with excessive sleep, followed by a switch to insomnia. In my case, sleeping tablets did not help and made the problem of insomnia worse. It was only when I discovered the amino acid L-Tryptophan and took a nightly dose of 2000mg that my sleep recovered. However, whilst this seems to be a high dose, my Doctor advised that daily doses as high as 4000mg are commonly used. Now L-Tryptophan is difficult to obtain, I have found Melatonin available in different strengths from www.immunesupport.com very helpful, and only need their lowest dose of 500micrograms as a single sublingual tablet at night. Unlike sleeping tablets these do not cause any side effects and no hangover effect as associated with antidepressants and sleeping tablets. For an approach to treating Herpes group viral infections such as EBV and CMV, I suggest that you look at www.frostandsimpson.com who offer a wide range of products to both treat infections and stop outbreaks. Having used their products I can confirm that they do help, and to date I have not had any adverse effects. As far as Isoprinosine is concerned, also known as Imunovir, generically Inosine Pranobex, I can recommend that it's a lot easier to purchase Inosine and PABA that when combined are virtually identical to Inosine Pranobex. Having tried this combination I can confirm excellent results in treating infections by reducing symptom intensity dramatically, and reducing the duration of infection. If you are in the USA, Inosine can be purchased without a prescription from those stores selling food supplements for those involved with sporting pursuits. PABA can also be purchased with ease from most stores selling food supplements since both are natural products found in the human body. For those in the UK, PABA can be easily purchased from Health Food Stores, and Inosine from some outlets that deal with specialist sports supplements. For reasons that I do not understand, Inosine is more difficult to obtain in the UK, but Isoprinosine, known in the UK as Imunovir, can be obtained with a Doctor's prescription. Regards, Andy Re: Isoprinosine/Sleep problems (separate topic) > , > > If you e-mail the Irish drug company that makes isoprinosine, at > info@... ask for their " Physician's Kit " to be sent to you > and/or your doctor. It's quite comprehensive and has information about how to > order it. It comes to about $170 for three months, including shipping. > > Thanks everyone for responding to my request for information. I guess > I'll take it day to day. As I said, I've developed a huge sleeping disorder > that started as a side effect to Neurontin, but is independent of my taking > Neurontin now. But most nights I have non-restorative sleep, which is worse > than not sleeping. Anyway, when I'm feeling massively sleep deprived that > seems to trump other symptoms. So it's been on the days when I've gotten > " quality " sleep that I've felt what I think are herx reactions. > > I have had -- in the past -- high antibody titres to EBV, CMV, HHV-6, but > I can't afford right now to do more testing. My NK activity was low when I > first became ill ten years ago, but when last tested -- seven years ago - it > was normal. So, if the herxing isn't too bad I'll base by assessment of > isoprinosine on how I feel, and give it at least six months. > > If anyone has any ideas about Sleep -- well, I think I've tried > everything; certainly every sedating med in the PDR and some that aren't in > it; I've done sleep labs; herbs. . . I've taken drugs that would put people > to sleep for 24 hours and I can't get past 5 or 6 (I now need 9); so I'm > taking doxepin at night (I can take 300mg and still not sleep through the > night!) -- my doc had me add lose dose lithium, too -- and in the middle of > the night a cocktail of xanax and klonopin, and sometimes imovane -- an > hypnotic available in Canada. . . but they're not working very well anymore. > > I actually think that overall my health is somewhat better, but it's > being obscured my this constant state of sleep deprivation. I " m feeling > rather desparate about lately. I don't know if it's essetially a drug caused > problem or whether it's now the CFIDS sleep symptom -- the first few years of > my illness I actually slept better than before I became ill. > > michael > > > > > > Carol, > > > > I'm new to this list, but would be very much interested in getting a copy > > of the sample prescription and cover letter. Any other information that > > you have on Isoprinosine would be greatly appreciated. > > > > Thank you, > > > > > > > > , you asked about Isoprinosine. I've been on it over a year - > > since November 2000. No side effects, no herx, and no immediate difference > > in how I felt, but my NK function returned to normal, and gradually the > > viral stuff seemed to go away. My HHV panel went from positive (HHV 7) to > > negative. And I stopped running the low-grade fever I'd had most of the > > time since 1996. > > > > Some in our local group who had significant viral loads (mine were pretty > > moderate to low) did have the herx problem. > > > > As always, stop if it's really bad, then resume at half the dose. In this > > case that means 3 a day for week one, 1 a day for week two, none on > > weekends, and of course two months on and one month off. If herxing is > > still a problem, stop again, and when you're ready to resume buy a pill > > cutter at the pharmacy!! > > > > For any who are interested, I have the info a local doc needs to > > prescribe this ready to send out easily as an attachment. It's an example > > prescription and cover letter. Precise wording required for customs. > > Actually very easy to do and perfectly legal. Though not approved by the > > FDA, a three month supply for personal use - with a prescription - is > > absolutely legal. > > > > Take care. Carol > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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