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Medical Forum / Diseases and Disorders / Herpes / June 2004UK Sufferer - Needs Help Obtaining Drugs.
Dear All, I've been suffereing with herpes for about 4 or 5 years now, and contrary to what I thought it's not getting any better. I've been to the hospital during various outbreaks, but have never had a positive diagnosis of herpes. I do know, however, that what I have is herpes, the feelings I get, the appearance and the 'pain in my legs' leading up to an outbreak. The hospital has even given me acyclovir (and have said 'hmmmm yes, it certainly looks like herpes') which has cleared up the problem VERY quickly. But they won't write me a prescription until a positive diagnosis has been made. I understand from the doctors that this can be a difficult thing to do. I'm tired of this - and I want to purchase my own Acyclovir - but how can I do that in the UK? Firstly is there anywhere in the UK that will sell this drug? OR Is there anyway I can get this drug shipped from the US? I'm really at my wits end and hence taking the matter into my own hands - I hope someone can help!! I'm going on holiday in less that two weeks - and I can feel it coming again - I don't want my holiday to be ruined!!!!!!!! Many thanks in advance. RJ > which has cleared up the problem VERY quickly. But they won't write me > a prescription until a positive diagnosis has been made. I understand > from the doctors that this can be a difficult thing to do. Well the hospital is likely to prefer you to do this through the GP since they do not have your complete record whereas your GP will. The positive diagnosis they are talking about being difficult is the culture - it has a high fail rate and needs to be timed around the early part of an outbreak. You should have an easier time arguing the GP into a scrip since he has more info to hand about you plus he can see you on a routine basis. A response to acyclovir may be convincing enough to him with all the other data he has. > I'm tired of this - and I want to purchase my own Acyclovir - but how > can I do that in the UK? You can't without a prescription. Well OK there is the topical cream for cold sores that is OTC but that formulation is for cold sores and clinging to the face (ie a dry exposed area) for drug delivery as opposed under clothes... Go to the GP, discuss the issue, argue your point and see what they say. The doc may not be happy to drop you straight onto suppressive therapy himself and may require you to take it episodically to make sure you don;t react (this is reasonable and sensible). The doc may also be leery of prescribing a med with no information on you and the condition too...again reasonable but you may be able to argue them off this position if you try but ultimately the doc is the one putting their neck on the line on limited information....so provide every piece of information you can (ie make sure they get your hospital records if they haven't got them already). > Firstly is there anywhere in the UK that will sell this drug? See above on its prescription status. > OR > Is there anyway I can get this drug shipped from the US? No, importing prescription medicines without a license is illegal for sender and recipient. If you got some abroad and bring it back with you thats a different matter (ie personal carriage) but again , you'd be seeing a doc. > I'm really at my wits end and hence taking the matter into my own > hands - I hope someone can help!! I'm going on holiday in less that > two weeks - and I can feel it coming again - I don't want my holiday > to be ruined!!!!!!!! Go to your GP, explain the history, say you are currently feeling a) stressed about it and b) the prodrome (if you say you can feel it coming) and so can he prescribe you something to prevent another outbreak. Tim -- When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568 Thanks Tim - thats really helpful and useful advice. RJay They can do a blood test and verify that you have it for sure. Go to your regular doctor and DEMAND the blood test. Then, if you test positive, DEMAND supressive therapy. Explain that the symptoms are debilitating and the humiliation of going to the emergancy room every time you have an outbreak is having a detramental psycological effect on you. Pound on the doctors desk and yell if you have to. > They can do a blood test and verify that you have it for sure. The NHS usually avoids blood tests for the simple reason that it does not and can not tell you if the disease outbreak someone is suffering is or is not herpes. Blood tests may end up giving a red herring remember...that IS the limitation. > Go to your > regular doctor and DEMAND the blood test. Then, if you test positive, DEMAND > supressive therapy. Point one works only if you are going private. Point 2 is not something anyone should be demanding. Reasonable consideration of the option you can demand but docs are there for a reason, not simply to hop to your demands. Assuming the doc is one who isnt up to speed by making such a demand is not productive, nor is it going to help persuade one. If one has read up on side effects and wants to make sure you respond and dont hit side effects then they are acting responsibly (sure rare but tell that to the doc who hands over 6 months of scrip and has a patient keel over because they ignore side effects for 3) or they've read your notes and have spotted a contra indication. > is having a detramental psycological effect on you. Pound on the doctors > desk and yell if you have to. A quick and easy way to have your access withdrawn in the UK, the NHS is obliged to treat you up to the point you start to abuse the staff. This is because too many people have assumed docs and other medical staff are their personal slaves and taken to attacking too many of them when they dont happen to do what that patient wants (maybe dealing with someone bleeding etc). Measured reason not hystrionics is the way to go. If a doc steps over the line of not acting reasonably themselves then move, see another doc or go through the relevant procedure...blowing a stack wiont get the fast action you want - if anything it'll slow it all down. Tim -- When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568 I take it England has national health care? My God, you poor people. I tell people over here how it would be if we had an NHS but they never believe me. They think it would be all peachy and the government would pay for whatever they needed. What really happens is employers stop providing insurance because no-one needs it. Then you HAVE to have NHS... then the government tells you what proceedures your alowed and what drugs the doctors can provide. Socialism doesn't work. And yes, if I go to the doctor here and demand something reasonable like a blood test for an STD they'll give it to me. And even if the doctor wouldn't I'd go to a different doctor that would provide the test and I wouldn't have to worry about losing coverage. And if my insurance company refused to pay, I'd either pay for it myself or switch insurance companies. 3 different insurance companies are offered by my employer and the government has nothing to say about what I can and can't do. > I take it England has national health care? My God, you poor people. I tell > people over here how it would be if we had an NHS but they never believe me. [quoted text clipped - 3 lines] > tells you what proceedures your alowed and what drugs the doctors can > provide. Socialism doesn't work. > And yes, if I go to the doctor here and demand something reasonable like a > blood test for an STD they'll give it to me. Did you actually read what I wrote or did you just stop as soon as I mentioned the NHS.... Thats also rather ignoring the physcial and verbal abuse you suggested should be used. And it means that yuo have defined what is reasonable and assume you are correct. This particular issue goes round and round in medical circles as to what is the sensible way to go. > And even if the doctor wouldn't > I'd go to a different doctor that would provide the test and I wouldn't have > to worry about losing coverage. And if my insurance company refused to pay, > I'd either pay for it myself or switch insurance companies. 3 different > insurance companies are offered by my employer and the government has > nothing to say about what I can and can't do. Nor does it here, except in the system it happens to stump up the cash for. Paying for it yourself is an option here too. You are fundamentally complaining about a medical service you pay for (by taxes) making medical decisons and how bad that is yet you quietly gloss over the little issue of a totally non medical one making the same decision (that bit about insurance refusing to pay)..... Tim -- When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568 > I take it England has national health care? My God, you poor people. I tell > people over here how it would be if we had an NHS but they never believe me. [quoted text clipped - 3 lines] > tells you what proceedures your alowed and what drugs the doctors can > provide. Socialism doesn't work. Tell it to Sweden, there is one of the best systems in the world, generally acknowledged as such, and its one of the most socialist countries out there. Sorry you have a distinctly inaccurate view of the UK health system. We have the NHS and private running side by side in relative harmony. I could go on for hours about the failings of the US health system or similar insurance driven medicine and the issues of poor provision for poverty line people etc etc etc - look at what is happening to Abbott and its HIV med at the moment - doesnt happen here. So please dont try andtell me you have an inherently superior system. It just has different problems. No system works perfectly but the UK system does work despite having that 'socialist tag' which is fascinating to see given it worked just as well under Thatcher who was as right wing as any US government. Tim -- When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568 >Tell it to Sweden, there is one of the best systems in the world, >generally acknowledged as such, and its one of the most socialist >countries out there. Sorry you have a distinctly inaccurate view of the UK >health system. We have the NHS and private running side by side in >relative harmony. >I could go on for hours about the failings of the US health system or >similar insurance driven medicine and the issues of poor provision for [quoted text clipped - 4 lines] >having that 'socialist tag' which is fascinating to see given it worked >just as well under Thatcher who was as right wing as any US government. <bites tongue first on left side... then on right side> Say, when are we going to get some Swedish blondes in here? Mike > <bites tongue first on left side... then on right side> Sounds like Tony Blair impression :) > Say, when are we going to get some Swedish blondes in here? We may have some....who knows. Tim -- When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568 >> Say, when are we going to get some Swedish blondes in here? >We may have some....who knows. Just happened to run across this timely compilation: http://www.coolabah.com/sweden/youknow.html YOU KNOW YOUVE BEEN IN SWEDEN TOO LONG WHEN........... [...] 169. You don't even get surprised when the doctor, not only can't help you, he/she can't even diagnose you. [...] 216. It seems normal to you that you've been bleeding in the emergency room at the hospital for four and a half hours when the three doctors walk by on their third coffee break since you got there. Mike > > <bites tongue first on left side... then on right side> > [quoted text clipped - 3 lines] > > We may have some....who knows. I've to Sweden, and I'm kinda blonde - is that close enough? A lot of good bands come from Sweden! > > We may have some....who knows. > > > I've to Sweden, and I'm kinda blonde - is that close enough? Well Ive lived there and been there reently again, but Im not blonde.... On that basis I discount us both :) Tim -- When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568 UPDATE!!!! Tim - Thank you SO SO SO MUCH! With your advice I rang my doctors surgery last night at 5pm. I was offered a non emergency appointment for 8:30 this morning. I went in to the doctor, told him of my condition, advised him of my hospital visits. On the spot he prescribed me a 3 month course of suppressive therapy - valaciclovir. I'M TOTALLY AMAZED AND OVER THE MOON!! So thank you tim! And what was all that stuff everyone was saying about our National Health Service...........................?!!! RJ Tims advice?!?!?!? SHEESH! Woh! hey! I never said the word "Superior" lol Our system has it's problems.Our problems revolve around our drug companies. Our government pays them to do re-search and then, once the drug is done, they mark up the price to ridiculous amounts and say "We need to pay for all the research we do!" We in the USA love to pay for re-search but this is just getting out of hand. I take 2 pills a day and my total drug bill comes to well over $300 per month. As far as the doctors go... they're dumb. I dislike doctors. I had this disease for 7 YEARS without knowing it because they continuously refused to test me. How many people did I infect because I didn't have the balls to scream and yell at the doctor? And how likely do you think it is that the person I caught it from went to the doctor and was told "You would know it if you had it." eh? As far as I'm concerned, doctors that are ignorant to this epidemic need to be screamed at. The amount of incomitence in the medical profesion today is astounding. > Woh! hey! I never said the word "Superior" lol Our system has it's You said national health services didnt work - its not unreasonable to assume you are indicating superiority of a private system. My point was I disagreed and that they just develop a different set of problems - which seems to be what you are saying here. I did also want to pooint out we also have the private side as well in the UK which many people from outside seem unaware of. I was also leery of the jumping around and screaming because the profession disagrees with the patients assessment of what is right, I have friends at my rugby club who have been on the receiving end of that while in the emergency room. I also wanted to point out that blood tests have issues that make it reasonable for a doc to first up say no and hence an outright demand in the case that was presented was not IMO the way to go. Tim -- When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568 Well, my view is, doctors think of you as "patient #132" for the day. If they perscibe the test your requesting their average cost per visit will go up $3. So they say "No" because their next evaluation and raise will be based on that. BUT... if you cause a big stink, they just want to get you out of their office. They know you should probably have the test anyway so they just give it to you to get you to leave. > > Woh! hey! I never said the word "Superior" lol Our system has it's > [quoted text clipped - 16 lines] > When playing rugby, its not the winning that counts, but the taking apart > ICQ: 5178568 I agree with Tim. I live in Oz, and we too have a nationalised health service. Though not completely faultless, I believe it is a better system that is in place in North America. The government DOES NOT tell doctors what tests to order or what drugs to prescribe, but of course there will be an investigation if at any time it is suspected the system is being abused. I remember watching "Donahue" some time ago, and a woman in the audience expressed some concern about "millions of Americans who don't have health care". And I guess that is the bottom line of what is so terribly wrong. Your system is not egalitarian. Or at least it does not seem to be, please correct me if I'm wrong. You certainly don't get the situation in either the UK or Oz where large numbers people are denied access to quality health care. It is provided to all. And like the UK, the public health program in Oz works very well in conjunction with a private system that is there for those who want it. Just my two cents, Maree > I take it England has national health care? My God, you poor people. I tell > people over here how it would be if we had an NHS but they never believe me. [quoted text clipped - 3 lines] > tells you what proceedures your alowed and what drugs the doctors can > provide. Socialism doesn't work. Well, in our system, there are millions of people that don't have health care... but they don't want it. They, in most cases, are the people that don't care about their health and want to mooch off the system. You can always go to the emergancy room here and they are required by law to treat you. If you get some horrible disease the government WILL pay for it. You become a ward of the state. My uncle broke his neck diving into shallow water. The government paid over $3 million to get him fixed up. So if a person goes to look for a job and they have a choice between and easy job with no insurance (like a bartender) or a more difficult job with insurance (like in a factory.) They chose the easy job and then go to the emergancy room whenever they need something. Then they complain about the lack of health care in the country. and before anyone yells at me... Yes, there are people here that want health care and can't get it. But it's not millions... Mostly it's the homeless and mentally ill. People that are too uneducated or mentally deficient to know how to use the system to their advantage. Most of these people live in the inner city or out in the middle of no-were. (i.e. the stereotypical 'mountain men') > > They can do a blood test and verify that you have it for sure. > > The NHS usually avoids blood tests for the simple reason that it does not > and can not tell you if the disease outbreak someone is suffering is or is > not herpes. Blood tests may end up giving a red herring remember...that IS > the limitation. Tim, could you explain this a bit more. Thanks G. > > > They can do a blood test and verify that you have it for sure. > > [quoted text clipped - 4 lines] > > > Tim, could you explain this a bit more. Sure..this one goes round and round inthe medical community. Basically the question is what, how and why to test. Blood tests give information to the individual about infection status...but not disease status. Cultures give information about disease, so you can treat it, and hence also infection status...its also the point where a doc can best intervene, and will want to intervene to treat a patient. So the NHS views it as the primary diagnostic. You can get blood tests done now that they are reliable but they are done less often and only with good reason (hence why walking into a surgery and demanding X Y or Z is unlikely to work comapred to going in and explaining to your Gp why you need test N) It also says categorically that this patient is suffering with this disease at this site, now. Also a typing from a culture is gold standard. This is particularly important in HSV1 genital infection which is ever more prevalent(1 in 3 new cases). A blood test simply cannot do this and if you rely on the test to tell you the same as a culture you will end up misdiagnosing potentially. Something that may or may not be herpes is presented to the doc, they do a blood test and get a positive and act on that. Problem is, there will be alot of people out there who test positive but in fact are suffering from something else at that point so you end up failing to treat something. Again HSv1 is the bigger problem here. At 1 in 3 cases of genital herpes appearing a blood test really tells you diddly on its own as 70% of people will be positive. Its fine if you have established something is herpes and want to know what type, but to take lesions on the genitals and decide if its herpes or some other infection gets more difficult if the blood test returns simply HSV1. Even HSv2 may be a red herring in that it might be in the person but not causing the current distress. The problem with cultures lies in their fail rate, so a doc has to use a reasonable degree of medical nouce if they get negative results from culture and here various things come into play, such as classic lesions, response to drugs and things like blood tests to help diagnose. Tim -- When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568 > > > > They can do a blood test and verify that you have it for sure. > > > [quoted text clipped - 41 lines] > > Tim Thanks Tim, that clarifies it for me. Basically, I know I have HSV genitally, but not which type - the test I had didn't provide that information. Because I haven't had any symptoms since my first outbreak*, I guess I'm going to have to rely on a blood test to ascertain whether it's type 1 or 2. It seems from your info, that that's when a blood test is the most appropriate - no symptoms to diagnose and treat, and no opportunity to do another culture. The only thing (I suppose) is if I have both type 1 and type 2 antibodies, I won't know which one's where - though I'm sure I could take a guess. * lucky me :-D -- G. But you're still cool, cause I say so! ;-) > > > > > They can do a blood test and verify that you have it for sure. > > > > [quoted text clipped - 60 lines] > -- > G. > But you're still cool, cause I say so! ;-) Hey I'm cool anyway, with or without HSV1, 2... You'd be cool even if you lived 3000 miles away from me... oh wait... well you're still cool anyways. > > But you're still cool, cause I say so! ;-) > > > Hey I'm cool anyway, with or without HSV1, 2... > Basically, I know I have HSV genitally, but not which type - the test I had > didn't provide that information. A culture? or a Tzank test? They didnt type it.....you might want to double check that in case its buried somewhere in the report. > Because I haven't had any symptoms since > my first outbreak*, I guess I'm going to have to rely on a blood test to > ascertain whether it's type 1 or 2. It seems from your info, that that's > when a blood test is the most appropriate - no symptoms to diagnose and Thats pretty accurate..if you know you have it then it can tell you which types. > treat, and no opportunity to do another culture. The only thing (I suppose) > is if I have both type 1 and type 2 antibodies, I won't know which one's > where - though I'm sure I could take a guess. If you have both then you are going to have a pretty good idea.... Tim -- When playing rugby, its not the winning that counts, but the taking apart ICQ: 5178568 > > Basically, I know I have HSV genitally, but not which type - the test I had > > didn't provide that information. [quoted text clipped - 15 lines] > > If you have both then you are going to have a pretty good idea.... Nice to know I'm getting hang of this herpes lark! > Dear All, > [quoted text clipped - 27 lines] > > RJ I'm guessing you've already tried your local GUM clinic? (In case they're any more help) -- GiGi |
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