Guest guest Posted May 27, 2011 Report Share Posted May 27, 2011 hi joy. i think your feeling bad could be a very good sign. for some, it lasts a few weeks but for some, a few months. make sure your doctor is checking your bloodwork often! sue From: Joy <joyhealth08@...> Subject: Antivirals - herxing? Received: Friday, May 27, 2011, 4:26 PM  Sorry if this is redundant - I've checked archives & am still uncertain what to do. I started acyclovir & Lysine 5 days ago & am pretty miserable. Headaches, chills, sore throat, aches, dizzy etc. I called my doctor's office & was advised to quit, which seems to not solve the problem of dealing with the viruses. My question is if I should hang in there, cut dosage, maybe stop Lysine for awhile - from what I can tell, it seems to bother me quite a bit. A read the debate that herxing isn't implicated in antivirals, if so, is this just an exacerbation? Is it possible that I should be on a different antiviral? If this response is normal, approx how long does it last? Appreciate your input. Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2011 Report Share Posted May 28, 2011 I had the same severe reaction----went for a month+, before I started to loose control of kidneys. I knew I had to endure, for success, but the kidney thing started to scare me. I was doing phone consults with my integrative MD in another state---and he wasn't listening. I called the medical office, and changed doctors-------new doctor had me stop all meds for several weeks, and then started up again on MUCH lower doses. It is a Catch 22-----endure, or go slowly, which all depends on you. God Bless, Sara > > > From: Joy <joyhealth08@...> > Subject: Antivirals - herxing? > > Received: Friday, May 27, 2011, 4:26 PM > > > Â > > > > Sorry if this is redundant - I've checked archives & am still uncertain what to do. I started acyclovir & Lysine 5 days ago & am pretty miserable. Headaches, chills, sore throat, aches, dizzy etc. I called my doctor's office & was advised to quit, which seems to not solve the problem of dealing with the viruses. My question is if I should hang in there, cut dosage, maybe stop Lysine for awhile - from what I can tell, it seems to bother me quite a bit. A read the debate that herxing isn't implicated in antivirals, if so, is this just an exacerbation? Is it possible that I should be on a different antiviral? If this response is normal, approx how long does it last? Appreciate your input. > > Joy > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2011 Report Share Posted May 28, 2011 Thank you Sue & Sara. I felt the same way, that I should grit my teeth & go through it! Doesn't seem right to quit because I will never get better if these viruses are running rampant. I stopped the Lysine yesterday & already feel the difference. I don't know how I will incorporate them again - I did order another brand in hopes that maybe that could make a difference. Joy > > > > > > From: Joy <joyhealth08@> > > Subject: Antivirals - herxing? > > > > Received: Friday, May 27, 2011, 4:26 PM > > > > > > Â > > > > > > > > Sorry if this is redundant - I've checked archives & am still uncertain what to do. I started acyclovir & Lysine 5 days ago & am pretty miserable. Headaches, chills, sore throat, aches, dizzy etc. I called my doctor's office & was advised to quit, which seems to not solve the problem of dealing with the viruses. My question is if I should hang in there, cut dosage, maybe stop Lysine for awhile - from what I can tell, it seems to bother me quite a bit. A read the debate that herxing isn't implicated in antivirals, if so, is this just an exacerbation? Is it possible that I should be on a different antiviral? If this response is normal, approx how long does it last? Appreciate your input. > > > > Joy > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2011 Report Share Posted May 29, 2011 Did your doctor suggest the lysine? I'm just saying that when on those harsh meds follow doctors order completely. Adding other items for " support " might be a bad cocktail. While I depend a great deal on my reading, there are times I keep very close to my MD's phone number. Luckily most of the integrative MD's I have used in the past are open to suggestions. God Bless, Sara > > > > > > > > > From: Joy <joyhealth08@> > > > Subject: Antivirals - herxing? > > > > > > Received: Friday, May 27, 2011, 4:26 PM > > > > > > > > > Â > > > > > > > > > > > > Sorry if this is redundant - I've checked archives & am still uncertain what to do. I started acyclovir & Lysine 5 days ago & am pretty miserable. Headaches, chills, sore throat, aches, dizzy etc. I called my doctor's office & was advised to quit, which seems to not solve the problem of dealing with the viruses. My question is if I should hang in there, cut dosage, maybe stop Lysine for awhile - from what I can tell, it seems to bother me quite a bit. A read the debate that herxing isn't implicated in antivirals, if so, is this just an exacerbation? Is it possible that I should be on a different antiviral? If this response is normal, approx how long does it last? Appreciate your input. > > > > > > Joy > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2011 Report Share Posted May 29, 2011 Joy, my doc says a " sprinkle " can be a dose. I started with a metal detoxifier at just what would fit on one tine of a fork. I am finally up to only 1/5 of the capsule twice a day. If I do more, I really hurt. Going slow is rather frustrating, cause we all want to get well YESTERDAY, but it makes life easier. Best wishes, > > > > > > > > > From: Joy <joyhealth08@> > > > Subject: Antivirals - herxing? > > > > > > Received: Friday, May 27, 2011, 4:26 PM > > > > > > > > > Â > > > > > > > > > > > > Sorry if this is redundant - I've checked archives & am still uncertain what to do. I started acyclovir & Lysine 5 days ago & am pretty miserable. Headaches, chills, sore throat, aches, dizzy etc. I called my doctor's office & was advised to quit, which seems to not solve the problem of dealing with the viruses. My question is if I should hang in there, cut dosage, maybe stop Lysine for awhile - from what I can tell, it seems to bother me quite a bit. A read the debate that herxing isn't implicated in antivirals, if so, is this just an exacerbation? Is it possible that I should be on a different antiviral? If this response is normal, approx how long does it last? Appreciate your input. > > > > > > Joy > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2011 Report Share Posted May 30, 2011 Yes Sara, he wanted me on Lysine too. I stopped it a couple days ago & am not feeling as ill. I'm hoping another brand I ordered will be different somehow. Thanks for your advice. > > > > > > > > > > > > From: Joy <joyhealth08@> > > > > Subject: Antivirals - herxing? > > > > > > > > Received: Friday, May 27, 2011, 4:26 PM > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > Sorry if this is redundant - I've checked archives & am still uncertain what to do. I started acyclovir & Lysine 5 days ago & am pretty miserable. Headaches, chills, sore throat, aches, dizzy etc. I called my doctor's office & was advised to quit, which seems to not solve the problem of dealing with the viruses. My question is if I should hang in there, cut dosage, maybe stop Lysine for awhile - from what I can tell, it seems to bother me quite a bit. A read the debate that herxing isn't implicated in antivirals, if so, is this just an exacerbation? Is it possible that I should be on a different antiviral? If this response is normal, approx how long does it last? Appreciate your input. > > > > > > > > Joy > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2011 Report Share Posted May 30, 2011 That's what I was wondering as well - maybe my dose was just too high. Also, for anyone interested - I'm swishing my pill around in my mouth so that it can be absorbed through the mucosa. My doc said that it doesn't get absorbed in the stomach very well. I so appreciate the sharing of experience in this group- thank you all! > > > > > > > > > > > > From: Joy <joyhealth08@> > > > > Subject: Antivirals - herxing? > > > > > > > > Received: Friday, May 27, 2011, 4:26 PM > > > > > > > > > > > > Â > > > > > > > > > > > > > > > > Sorry if this is redundant - I've checked archives & am still uncertain what to do. I started acyclovir & Lysine 5 days ago & am pretty miserable. Headaches, chills, sore throat, aches, dizzy etc. I called my doctor's office & was advised to quit, which seems to not solve the problem of dealing with the viruses. My question is if I should hang in there, cut dosage, maybe stop Lysine for awhile - from what I can tell, it seems to bother me quite a bit. A read the debate that herxing isn't implicated in antivirals, if so, is this just an exacerbation? Is it possible that I should be on a different antiviral? If this response is normal, approx how long does it last? Appreciate your input. > > > > > > > > Joy > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2011 Report Share Posted May 31, 2011 > > That's what I was wondering as well - maybe my dose was just too high. Also, for anyone interested - I'm swishing my pill around in my mouth so that it can be absorbed through the mucosa. My doc said that it doesn't get absorbed in the stomach very well. I so appreciate the sharing of experience in this group- thank you all! > > Hi, Joy. Which pill are you trying to absorb through the oral mucosa? I'm getting confused here! My own experience is that I take 6-8 grams of Valtrex a day and 4 grams of lysine a day, and have had no side effects with either. (I also sometimes take 50 mg a day of zinc, although taking it regularly sometimes seems to produce nausea.) I am a patient of Dr. Lerner in Michigan, and he has been monitoring me very closely. I became ill on September 13, 2008, and declined very rapidly. I soon was sleeping 20 hours a day, too weak to shower most days, often too weak to sit up for more than 30 minutes at a time, etc. I was lucky in that I didn't have much pain or nausea, but it still felt like a sort of living death. I started on 1-2 grams daily of Valtrex or acyclovir about three months after I got sick. This seemed to stop my decline, but didn't improve things much. About seven months after getting sick, I started being treated by Dr. Lerner and he prescribed 8 grams a day of Valtrex for me. (I weigh about 230 pounds, and if I weighed less, the dose would have been lower.) I'm supposed to take the Valtrex in 4 doses of two grams each, but it's hard to fit all these doses in, so I often end up taking 6 grams a day instead of 8. I have been on the high dose of Valtrex for just over two years, and I have greatly improved. Most days, I am able to spend a total of about 12 hours out of bed, can shower, and can do one or two 30 minute sessions on my feet making dinner or shopping. (I'm still not well enough for a regular job, though.) In the past few months, I have started taking elderberry extract, and feel that this is also helping me. There are a number of studies showing that elderberry has potent anti-viral effects and also stimulates the immune system. Since elderberry has a long history of use as a food, it is generally safe. However, stimulating the immune system can make allergies, asthma, or autoimmune problems worse, so for anyone who has these problems, I'd suggest consulting your doctor before trying elderberry. My biggest problem at the moment is paying for my medical care. Valtrex is way, way expensive, especially in high doses. For those who want to try an antiviral and can't afford Valtrex, elderberry might be a good option. There may be a number of different causes of CFS out there, but for those who have a fast, flu-like onset (as I did), I strongly suspect the cause is a virus, most likely a herpes virus. I feel that there should be a LOT more research on using antiviral agents to treat CFS. -- Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 Hi Judy- I was speaking about acyclovir. I'm taking 800mg 4x daily. I have no idea how much is absorbed that way vs swallowing. Also wonder if Valtrex is much better. My doc just told me that it was quite a bit more expensive. I agree that there needs to be much more research! I had sudden onset also, 20 yrs ago! My doctor thought it was viral at the time, but I never got treated. I actually went down the sorry path of antidepressants & treated like it was all in my head! I was totally bedridden too - could hardly get out of bed to go to the bathroom. It's been a very long journey (too much to go into) I believe now that the viruses (EBV, CMV & ?) have caused so much damage that I will never be well - can only hope for better. Thanks for the elderberry suggestion. I'm presently going through a rotation diet for multiple delayed allergies, so may not be a good idea for now. I also got accepted into the clinical trial for energy supplements (haven't started yet). I guess the best we can do is to keep trying and always hope for the best. Best wishes to everyone here... Joy > > > > Hi, Joy. Which pill are you trying to absorb through the oral mucosa? I'm getting confused here! > > My own experience is that I take 6-8 grams of Valtrex a day and 4 grams of lysine a day, and have had no side effects with either. (I also sometimes take 50 mg a day of zinc, although taking it regularly sometimes seems to produce nausea.) I am a patient of Dr. Lerner in Michigan, and he has been monitoring me very closely. > > I became ill on September 13, 2008, and declined very rapidly. I soon was sleeping 20 hours a day, too weak to shower most days, often too weak to sit up for more than 30 minutes at a time, etc. I was lucky in that I didn't have much pain or nausea, but it still felt like a sort of living death. > > I started on 1-2 grams daily of Valtrex or acyclovir about three months after I got sick. This seemed to stop my decline, but didn't improve things much. About seven months after getting sick, I started being treated by Dr. Lerner and he prescribed 8 grams a day of Valtrex for me. (I weigh about 230 pounds, and if I weighed less, the dose would have been lower.) I'm supposed to take the Valtrex in 4 doses of two grams each, but it's hard to fit all these doses in, so I often end up taking 6 grams a day instead of 8. > > I have been on the high dose of Valtrex for just over two years, and I have greatly improved. Most days, I am able to spend a total of about 12 hours out of bed, can shower, and can do one or two 30 minute sessions on my feet making dinner or shopping. (I'm still not well enough for a regular job, though.) > > In the past few months, I have started taking elderberry extract, and feel that this is also helping me. There are a number of studies showing that elderberry has potent anti-viral effects and also stimulates the immune system. Since elderberry has a long history of use as a food, it is generally safe. However, stimulating the immune system can make allergies, asthma, or autoimmune problems worse, so for anyone who has these problems, I'd suggest consulting your doctor before trying elderberry. > > My biggest problem at the moment is paying for my medical care. Valtrex is way, way expensive, especially in high doses. For those who want to try an antiviral and can't afford Valtrex, elderberry might be a good option. > > There may be a number of different causes of CFS out there, but for those who have a fast, flu-like onset (as I did), I strongly suspect the cause is a virus, most likely a herpes virus. I feel that there should be a LOT more research on using antiviral agents to treat CFS. > > -- Judy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 Hi there, I have never heard that acyclovir or valtrex was disturbed by stomach acid. I have never read that it was absorbed at different rates, etc. It seems like a lot of work. Are the molecules small enough to go through the mucosa? Most substances are too large. I do know that some of these medications need to be on a very strict time table (it all depends on the replication rates of the virus). I don't have links to show this but research I did ages ago showed that EBV was one of those 8 hr replication viruses so being faithful to the dosing was important. Especially for acyclovir since Valtrex is usually dosed once a day. I did experiment with this and felt there was some truth to it. Valtrex is acyclovir with Valine (an amino acid). It is more expensive (even though it was re-categorized as generic last year, the price hasn't come down yet). I purchase mine overseas for $18/month at 500mg per day whereas my insurance cost is $30. I do feel the difference between Valtex and acyclovir. It is a remarkable difference - almost the same as not being on anything and being on acyclovir. You could take acyclovir with valine. I haven't worked out the exact amount but here is a link to the Valtrex pdf. Maybe you could find it in there. http://us.gsk.com/products/assets/us_valtrex.pdf I know that I do better at 1gm per day - I may try the higher doses. What happens after the doses are reduced? I usually go back to my slight fever, flu like symptoms within a week. I am wondering if these high doses for longer times puts the virus in remission. I do know that higher doses such as the shingles dose (3gms per day) is very liver toxic. Any thoughts on that? I have also used Apple Cider Vinegar to help drop down the viral load. It breaks down the lipid layer. Worked when I didn't have insurance for medication. I didn't realized acyclovir was so cheap and I didn't have sources for purchasing overseas. In order of preference (for me, we're all different), I like Valtrex, then acyclovir with valine, then acyclovir, then apple cider vinegar, then elderberry and other herbal antivirals. Judy, you are right in the caution with elderberry and I find that true for other immume builders/strengtheners - caution must be used or you can worsen other immune related conditions. Marti > > > Hi Judy- > > I was speaking about acyclovir. I'm taking 800mg 4x daily. I have no idea how much is absorbed that way vs swallowing. Also wonder if Valtrex is much better. My doc just told me that it was quite a bit more expensive. I agree that there needs to be much more research! > > I had sudden onset also, 20 yrs ago! My doctor thought it was viral at the time, but I never got treated. I actually went down the sorry path of antidepressants & treated like it was all in my head! I was totally bedridden too - could hardly get out of bed to go to the bathroom. It's been a very long journey (too much to go into) > > I believe now that the viruses (EBV, CMV & ?) have caused so much damage that I will never be well - can only hope for better. > > Thanks for the elderberry suggestion. I'm presently going through a rotation diet for multiple delayed allergies, so may not be a good idea for now. I also got accepted into the clinical trial for energy supplements (haven't started yet). I guess the best we can do is to keep trying and always hope for the best. > > Best wishes to everyone here... > > Joy > > > > > > > Hi, Joy. Which pill are you trying to absorb through the oral mucosa? I'm getting confused here! > > > > My own experience is that I take 6-8 grams of Valtrex a day and 4 grams of lysine a day, and have had no side effects with either. (I also sometimes take 50 mg a day of zinc, although taking it regularly sometimes seems to produce nausea.) I am a patient of Dr. Lerner in Michigan, and he has been monitoring me very closely. > > > > I became ill on September 13, 2008, and declined very rapidly. I soon was sleeping 20 hours a day, too weak to shower most days, often too weak to sit up for more than 30 minutes at a time, etc. I was lucky in that I didn't have much pain or nausea, but it still felt like a sort of living death. > > > > I started on 1-2 grams daily of Valtrex or acyclovir about three months after I got sick. This seemed to stop my decline, but didn't improve things much. About seven months after getting sick, I started being treated by Dr. Lerner and he prescribed 8 grams a day of Valtrex for me. (I weigh about 230 pounds, and if I weighed less, the dose would have been lower.) I'm supposed to take the Valtrex in 4 doses of two grams each, but it's hard to fit all these doses in, so I often end up taking 6 grams a day instead of 8. > > > > I have been on the high dose of Valtrex for just over two years, and I have greatly improved. Most days, I am able to spend a total of about 12 hours out of bed, can shower, and can do one or two 30 minute sessions on my feet making dinner or shopping. (I'm still not well enough for a regular job, though.) > > > > In the past few months, I have started taking elderberry extract, and feel that this is also helping me. There are a number of studies showing that elderberry has potent anti-viral effects and also stimulates the immune system. Since elderberry has a long history of use as a food, it is generally safe. However, stimulating the immune system can make allergies, asthma, or autoimmune problems worse, so for anyone who has these problems, I'd suggest consulting your doctor before trying elderberry. > > > > My biggest problem at the moment is paying for my medical care. Valtrex is way, way expensive, especially in high doses. For those who want to try an antiviral and can't afford Valtrex, elderberry might be a good option. > > > > There may be a number of different causes of CFS out there, but for those who have a fast, flu-like onset (as I did), I strongly suspect the cause is a virus, most likely a herpes virus. I feel that there should be a LOT more research on using antiviral agents to treat CFS. > > > > -- Judy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2011 Report Share Posted June 2, 2011 montoya's original cohort, who responded to valcyte, all got sicker for a while. not everyone gets sicker on the antivirals, but it is my understanding that is it very common, and could be a good sign. i was told that personally by my doctor. From: natellite <natellite@...> Subject: Antivirals - herxing? Received: Thursday, June 2, 2011, 3:39 PM Â Joy, My understandings is that antiviral agents don't destroy viral particles; rather, they interfere with viral replication so that the virus cannot continue to reproduce to the level where normal cellular functions are disabled. I dont' see how one would experience a " die off " reaction if the problem is viral. You could be experiencing an immune response, this happened to me and I was advised to discontinue. I usually take much lower doses of these types of meds because my reaction is quite severe and causes relapses. Be careful. Nat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2011 Report Share Posted June 3, 2011 > > montoya's original cohort, who responded to valcyte, all got sicker for a while. not everyone gets sicker on the antivirals, but it is my understanding that is it very common, and could be a good sign. i was told that personally by my doctor. > > Well, apart from a herxheimer reaction, there are plenty of other reasons why a new drug might make a person feel sick. In addition to side-effects from the active ingredient, a person might have a sensitivity to one of the other ingredients in the pill, such as a filler or dye. If one is already feeling ill from CFS, having a side effect or allergic reaction from the pills could make one REALLY sick! The difference between this sort of side effect and a true herxheimer reaction is that with a herxheimer reaction, ANY medicine that works will cause the reaction. With a regular side effect, switching to a different drug might be just as effective and might get rid of the side effect. Dr. Lerner tells me that a few of his patients have a bad reaction (mostly nausea) to Valtrex, and he generally puts those patients on Famvir instead. By the way, ValCYTE (which Dr. Montoya used in his study) is a much more toxic drug than ValTREX (which Dr. Lerner uses, and I am taking.) Valcyte has a lot of side effects. My guess is, many of Dr. Montoya's patients initially had side effects from the Valcyte as well as having CFS, so they felt very sick. Over time, the CFS improved, so they felt better. (The side effects of Valcyte may or may not have gotten better over time -- a lot of drug side effects improve over time, but some stay the same and some get worse.) -- Judith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2011 Report Share Posted June 3, 2011 Ni Nat and Judith, Thank you for correcting this error - I remember hearing that but I always forget that. Since I don't have a herx reaction to anti-virals, I take it at face value when someone says they do. Sometimes, people use the term loosely. But you are right, anti-virals stop replication, not kill cells. Joy, it wouldn't hurt to do the things I mention but they are probably not going to get to the heart of the problem. Did you start any other medications/supplements at the same time? I hope you can figure this out and feel better soon. I agree that Valcyte is in a different ballpark than Valtrex and acyclovir. It always reminded me of Ampligen. I think it was/is a very toxic medication that most of the subjects had trouble with. Marti > > Joy, > > My understandings is that antiviral agents don't destroy viral particles; rather, they interfere with viral replication so that the virus cannot continue to reproduce to the level where normal cellular functions are disabled. > > I dont' see how one would experience a " die off " reaction if the problem is viral. You could be experiencing an immune response, this happened to me and I was advised to discontinue. I usually take much lower doses of these types of meds because my reaction is quite severe and causes relapses. Be careful. > > Nat > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2011 Report Share Posted June 4, 2011 Thank you everyone for all your suggestions. I made a quick call to my immunologist yesterday. As one of you mentioned, she also said that acyclovir is very toxic to the kidneys & liver and needs to be monitored regularly. She said that she had to hospitalize one of her patients for kidney problems from it. She doesn't feel the studies are conclusive enough to recommend using it in high doses. In the meantime, I've been told by both doctors to discontinue the acyclovir. At this point, I'm not sure if I'll try it again at a lower dosage or try something different. My biggest concern is that I'm not treating the underlying problems of my CFS if I don't do the antivirals, so I need to do something. Back to the trial of acyclovir, I do not understand what is going on with me. It seems that I immediately got the flu symptoms when I started the protocol. I read the side effects of the drug and it doesn't seem to fit with what was happening to me. That's where I reached the conclusion of some kind of die-off rather than an exacerbation of CFS symptoms. So at this point, I don't know if it is better at a lower dosage, or isn't the right drug for me. I've heard that some people feel worse before they feel better - is that what I should experience? Should the drugs be taken at a comfort level for the body? Do most people take the antivirals forever? BTW, I have EBV & CMV (still in the process of testing). Joy > > > > montoya's original cohort, who responded to valcyte, all got sicker for a while. not everyone gets sicker on the antivirals, but it is my understanding that is it very common, and could be a good sign. i was told that personally by my doctor. > > > > > > Well, apart from a herxheimer reaction, there are plenty of other reasons why a new drug might make a person feel sick. In addition to side-effects from the active ingredient, a person might have a sensitivity to one of the other ingredients in the pill, such as a filler or dye. If one is already feeling ill from CFS, having a side effect or allergic reaction from the pills could make one REALLY sick! > > The difference between this sort of side effect and a true herxheimer reaction is that with a herxheimer reaction, ANY medicine that works will cause the reaction. With a regular side effect, switching to a different drug might be just as effective and might get rid of the side effect. > > Dr. Lerner tells me that a few of his patients have a bad reaction (mostly nausea) to Valtrex, and he generally puts those patients on Famvir instead. > > By the way, ValCYTE (which Dr. Montoya used in his study) is a much more toxic drug than ValTREX (which Dr. Lerner uses, and I am taking.) Valcyte has a lot of side effects. My guess is, many of Dr. Montoya's patients initially had side effects from the Valcyte as well as having CFS, so they felt very sick. Over time, the CFS improved, so they felt better. (The side effects of Valcyte may or may not have gotten better over time -- a lot of drug side effects improve over time, but some stay the same and some get worse.) > > -- Judith > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2011 Report Share Posted June 4, 2011 joy.....dr. lerner uses high doses of valtrex (4 g/day) and claims it is very safe if you drink lots of water and get regular bloodwork. i am pretty sure most people get sick on it at first, and it is a good sign. i do not believe that the herpes viruses are the underlying cause of the disease, but it helps to treat them if they are active. From: Joy <joyhealth08@...> Subject: Re: Antivirals - herxing? Received: Saturday, June 4, 2011, 9:21 AM Â Thank you everyone for all your suggestions. I made a quick call to my immunologist yesterday. As one of you mentioned, she also said that acyclovir is very toxic to the kidneys & liver and needs to be monitored regularly. She said that she had to hospitalize one of her patients for kidney problems from it. She doesn't feel the studies are conclusive enough to recommend using it in high doses. In the meantime, I've been told by both doctors to discontinue the acyclovir. At this point, I'm not sure if I'll try it again at a lower dosage or try something different. My biggest concern is that I'm not treating the underlying problems of my CFS if I don't do the antivirals, so I need to do something. Back to the trial of acyclovir, I do not understand what is going on with me. It seems that I immediately got the flu symptoms when I started the protocol. I read the side effects of the drug and it doesn't seem to fit with what was happening to me. That's where I reached the conclusion of some kind of die-off rather than an exacerbation of CFS symptoms. So at this point, I don't know if it is better at a lower dosage, or isn't the right drug for me. I've heard that some people feel worse before they feel better - is that what I should experience? Should the drugs be taken at a comfort level for the body? Do most people take the antivirals forever? BTW, I have EBV & CMV (still in the process of testing). Joy > > > > montoya's original cohort, who responded to valcyte, all got sicker for a while. not everyone gets sicker on the antivirals, but it is my understanding that is it very common, and could be a good sign. i was told that personally by my doctor. > > > > > > Well, apart from a herxheimer reaction, there are plenty of other reasons why a new drug might make a person feel sick. In addition to side-effects from the active ingredient, a person might have a sensitivity to one of the other ingredients in the pill, such as a filler or dye. If one is already feeling ill from CFS, having a side effect or allergic reaction from the pills could make one REALLY sick! > > The difference between this sort of side effect and a true herxheimer reaction is that with a herxheimer reaction, ANY medicine that works will cause the reaction. With a regular side effect, switching to a different drug might be just as effective and might get rid of the side effect. > > Dr. Lerner tells me that a few of his patients have a bad reaction (mostly nausea) to Valtrex, and he generally puts those patients on Famvir instead. > > By the way, ValCYTE (which Dr. Montoya used in his study) is a much more toxic drug than ValTREX (which Dr. Lerner uses, and I am taking.) Valcyte has a lot of side effects. My guess is, many of Dr. Montoya's patients initially had side effects from the Valcyte as well as having CFS, so they felt very sick. Over time, the CFS improved, so they felt better. (The side effects of Valcyte may or may not have gotten better over time -- a lot of drug side effects improve over time, but some stay the same and some get worse.) > > -- Judith > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2011 Report Share Posted June 4, 2011 Joy, I think you should follow the advice of your doctors and not take advice from people on this list. We all react differently to drugs, supplements etc and this list is about sharing our OWN experiences and not to give advice. Moderator- correct me if I'm out of line here. thanks. {Moderator: Not out of line. That is the usual disclaimer for these types of medical self-help groups. Good reminder, though...} Nat > > joy.....dr. lerner uses high doses of valtrex (4 g/day) and claims it is very safe if you drink lots of water and get regular bloodwork. i am pretty sure most people get sick on it at first, and it is a good sign. i do not believe that the herpes viruses are the underlying cause of the disease, but it helps to treat them if they are active. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2011 Report Share Posted June 4, 2011 yes..cuz doctors have just been SO helpful with this disease for the last 30 yrs. From: natellite <natellite@...> Subject: Re: Antivirals - herxing? Received: Saturday, June 4, 2011, 6:45 PM  Joy, I think you should follow the advice of your doctors and not take advice from people on this list. We all react differently to drugs, supplements etc and this list is about sharing our OWN experiences and not to give advice. Moderator- correct me if I'm out of line here. thanks. {Moderator: Not out of line. That is the usual disclaimer for these types of medical self-help groups. Good reminder, though...} Nat > > joy.....dr. lerner uses high doses of valtrex (4 g/day) and claims it is very safe if you drink lots of water and get regular bloodwork. i am pretty sure most people get sick on it at first, and it is a good sign. i do not believe that the herpes viruses are the underlying cause of the disease, but it helps to treat them if they are active. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2011 Report Share Posted June 5, 2011 you guys are great lol. I've been wingin it for the most part of 20 yrs - feels like I'm the one leading the doctors! Still undecided how to proceed, but really appreciate hearing your opinions. Thanks....... Joy > > > > joy.....dr. lerner uses high doses of valtrex (4 g/day) and claims it is very safe if you drink lots of water and get regular bloodwork. i am pretty sure most people get sick on it at first, and it is a good sign. i do not believe that the herpes viruses are the underlying cause of the disease, but it helps to treat them if they are active. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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