Study links severe drug reaction to herpes virus

[smithconfused]

old article but very interesting.

(Reuters) - A rare and dangerous reaction to a range of common medicines including antibiotics and anticonvulsants may be caused by a severe immune response to reactivated herpes virus, scientists said on Wednesday.

http://www.reuters.com/article/idUSTRE67O4QQ20100825

[struggle83]

Article

old article but very interesting.

(Reuters) - A rare and dangerous reaction to a range of common medicines including antibiotics and anticonvulsants may be caused by a severe immune response to reactivated herpes virus, scientists said on Wednesday.

http://www.reuters.com/article/idUSTRE67O4QQ20100825

Couple things.

First, it just amazes me at all the things this little bug can can cause problems with. It is truly a major health hazard and needs to be treated as such in the medical community. HSV is grossly underestimated and misunderstood. The recent links between HSV and a growing list of diseases are horrifying.

To that, my second point. There are no such things as "anti-herpes" drugs as mentioned in the article. That is another misunderstanding and more importantly it sends the wrong message to the reader. It infers that there are drugs that can remove herpes so it's nothing really to worry about.

When are these things ever going to change???

[smithconfused]

I so agree with you. Herpes is a big deal and people make it seem like it's not. I'm constantly having outbreaks and the antivirals they have available seems not to help. I'm really confused why there aren't more medications available to help with these horrible symptoms. I know we all would love a cure, but if there isn't one, I just pray for more options when it comes to antivirals. ANNOYED!! I feel as though herpes sufferers are dealing with this health issue in silence.

[Sweet7]

That's because we have been suffering in silence. I had to mention to someone on another site that said that they and thier doc thinks it's no big deal that 50k/year go blind due to HSV. Most people who don't have ob's much and the current antivirals work for really don't think about it much. Even other support groups tell people not to be concerned about the rare cases if it doesnt concern you. Well, I like to think were all in this boat together and we all should join together to help the ones where herpes is a big deal. If it's no big deal, then why do we have to keep quiet or face scrutiny? The CDC states that GH is a serious health hazard. But so many people are so worried about the psychological effects being worse than the virus. Well, if we had better treatment option, then we wouldn't have the bad psychological effects. Besides, there are so many of us, just the revenue alone from a better treatment option could drive more research into other deadly disease or regenerative medicine. More lives will be saved or restored in the long run. I know, I keep repeating myself, but I know in my gut I'm right about that.

[struggle83]

I so agree with you. Herpes is a big deal and people make it seem like it's not. I'm constantly having outbreaks and the antivirals they have available seems not to help. I'm really confused why there aren't more medications available to help with these horrible symptoms. I know we all would love a cure, but if there isn't one, I just pray for more options when it comes to antivirals. ANNOYED!! I feel as though herpes sufferers are dealing with this health issue in silence.

When people call this infection a benign skin condition it makes my benign-skin-condition-skin crawl. I know that description is used to assuage recent contractors of the horrible virus the terrible thoughts and concerns but it demeans the condition and it undermines our goal of making this a serious health problem.

If you are having constant OB's and conventional treatment isnt helping then I suggest you look at the Chimerix post and get involved in the expanded access trials.

[WoodlandWalker]

I agree with Sweet7.

[WoodlandWalker]

The article says:

"These results suggest that certain drugs may reactivate latent viruses lurking in patients' cells, sounding an alarm that triggers the release of killer immune cells that end up misguidedly attacking the body's own organs,"

This sounds exactly like what Cullen is trying to achieve

[smithconfused]

I definitely agree with you both. We've signed petitions, written to government officials and researchers, donated to various research, and share information on this site. What else to do???? I'm lost. I feel as though our voices are not being heard. I feel hopeless at times. I guess saying that herpes is 'just a harmless skin disease' make people feel 'normal' or something. We need herpes to be a public health issue. It should be included in standard std testing; medical workers should be more aware of the signs and symptoms of genital herpes and not just the extreme cases portrayed in the textbooks or internet. I think if there was more education on herpes, there would more acceptance and less stigma. People are afraid to bring herpes to the forefront and say they have herpes primarily because of the stigma. Education and knowledge are essential in fighting this battle.

All my effort in signing petitions, donating and writing letters/emails is to find more treatment options and safe effective medication. For me, if I did not have constant outbreaks and there was safe effective medication, I would also feel like herpes was 'just a skin disease.' We have no idea what valtrex and these other antivirals will do to our kidneys and liver with long term use. We never know.

[WoodlandWalker]

Look, I also think that a similar phenomena could take place in trials of anti-herpes anti-virals.

This may explain some of the apparent adverse reactions that people have had with drugs that have failed clinical trials in the past. Not that the drugs are dangerous, but that they have allowed these peoples immune system to start fighting a pre-existing chronic herpes infection that is more than skin deep and their symptoms are a result of this increased immune action.

[camomile]

Very useful thread. Deeply.

http://www.neurology.org/content/51/2/554.short

I oft wondered if "atypical" H cases & "immuno-compromised" cases are similarly classed in terms of disease sequeae (or if not entirely the same). I noticed this when I read some articles online.

When I read someone posting "H is only a minor skin condition" I'd usually think, "here we go again.." but then I usually think that the person (poster) has got a very minor symptom. maybe, atypical H and typical benign H may be a world apart as to how it affects us?

If you have got systemic symptoms as in atypical H, it is a real hard going, a real battle. For example, if your body has been fighting this disease over many yrs, what immunological effects do we get in a long run?

Like someone else has already said, H virus might be found to be implicated in many other diseases, (particularly autoimmune diseases) as medical sciences make further advance.

[Sweet7]

Yes, activating the whole viral load is what Cullen is trying to do. But inducing a higher number of T cells is also the point of therapeutic vaccines. This concerns me and now may make sense as to why I’m having a hard time. I am on a very low dose of a type of drug mentioned in this article and had suspected something was wrong with my neurons. Now I’m thinking it’s the medication I’m on and I need that medication. I think this very well could prove that Cullen’s theory is dangerous as I have suspected. I would think that there could be enough of people who have been on these types of drugs who also have HSV that could be studied to see if antivirals in combination with these drugs have reduced ob’s and shedding. That could prove or disprove Cullens theory that all of the viral load will be depleted.

[struggle83]

Yes, activating the whole viral load is what Cullen is trying to do. But inducing a higher number of T cells is also the point of therapeutic vaccines. This concerns me and now may make sense as to why I’m having a hard time. I am on a very low dose of a type of drug mentioned in this article and had suspected something was wrong with my neurons. Now I’m thinking it’s the medication I’m on and I need that medication. I think this very well could prove that Cullen’s theory is dangerous as I have suspected. I would think that there could be enough of people who have been on these types of drugs who also have HSV that could be studied to see if antivirals in combination with these drugs have reduced ob’s and shedding. That could prove or disprove Cullens theory that all of the viral load will be depleted.

Activating the whole viral load could have serious implications or it could be rather benign. It could range from hospitalization during a "cocktail" of anti-hsv medications or it could be an outpatient monotherapy. My guess is that it's the former. No one has ever "turned-on" a (possibly systemic) latent virus. We need to make sure we don't turn on other things at the same time, thereby starting some auto-immune response. The cure would be worse than the illness. Doctors don't even know the extent of viral infection. It has not been adequately studied and would require decades of autopsy studies.

These researchers are dealing in pure speculation and logic. The body does not behave logically, or at least with our conception of that logic. Please remember that current concepts in medicine are CONSTANTLY redefined in medicine every day. A very asture and seasoned doctor once told me "The more we learn about medicine, the more we learn about medicine". What is gospel today is garbage tomorrow.

I still don't understand any researchers posit about depleting viral load. We don't have an artifical mechanism to deplete this load. I don't think the human body has a mechanism to deplete this load. How is it going to deplete???

[Sweet7]

I just asked the same question on another post. I'm speculating that our immune system is a major player with that but haven't found any research regarding that yet.

[RealisticGal]

That's because we have been suffering in silence. I had to mention to someone on another site that said that they and thier doc thinks it's no big deal that 50k/year go blind due to HSV.

Do you have a source for that stat, Sweet7?

I've read this: "The National Eye Institute (NEI) says an estimated 400,000 Americans have experienced some form of ocular herpes, with close to 50,000 new and recurring cases occurring each year."

But I have not found anything that suggests those 50,000 cases/year all go blind. In fact, not to diminish the seriousness, but mostly I've read just the opposite --- that most cases of ocular herpes do not lead to blindness.

[struggle83]

Do you have a source for that stat, Sweet7?

I've read this: "The National Eye Institute (NEI) says an estimated 400,000 Americans have experienced some form of ocular herpes, with close to 50,000 new and recurring cases occurring each year."

But I have not found anything that suggests those 50,000 cases/year all go blind. In fact, not to diminish the seriousness, but mostly I've read just the opposite --- that most cases of ocular herpes do not lead to blindness.

I think what's more frightening than unsubstantiated statistics is that someone's doctor could care less if that many people went blind. Where are these guys coming from and why are they getting into medicine? It certainly seems it isn't to help people.

[camomile]

Going back to OT, have you thought about the fact that we do have a vaccine for shingles (used in UK). So far as I know, it is used for OAP (old age pensioners) suffering from shingles.

I should think, if vaccine for H would have to be made, it's not a matter of getting H removed out of latency etc. But it's just a matter of developing vaccine designed for H. If a vaccine for one virus is made and is effective, I honestly don't see why there's no vaccine for H.

We also now have a vaccine for deadly HPVs. £300-400 for the whole vaccination process over 3 months.

Apparently men are more susceptible for oral cancer from HPVs (via oral sex) and there was a program about it. thought I'd mention this whilst this goes slightly off-topic. If I was a younger and sexually active male, I'd go for paying for this jab, for sure. (Or if I had a teenage son, I'll pay for him too.)

[helpiamconfused2]

Going back to OT, have you thought about the fact that we do have a vaccine for shingles (used in UK). So far as I know, it is used for OAP (old age pensioners) suffering from shingles.

I should think, if vaccine for H would have to be made, it's not a matter of getting H removed out of latency etc. But it's just a matter of developing vaccine designed for H. If a vaccine for one virus is made and is effective, I honestly don't see why there's no vaccine for H.

We also now have a vaccine for deadly HPVs. £300-400 for the whole vaccination process over 3 months.

Apparently men are more susceptible for oral cancer from HPVs (via oral sex) and there was a program about it. thought I'd mention this whilst this goes slightly off-topic. If I was a younger and sexually active male, I'd go for paying for this jab, for sure. (Or if I had a teenage son, I'll pay for him too.)

Camomile, I agree with you. Since Shingles is in the herpes family, it looks like something similar could be developed for hsv1 and 2. Also, all kinds of press is given to stuff that extends people's lives 30 days or so. I know we are talking life and death but if they could come up with something to improve the quality of life for MILLIONS who live 30 more years it damn sure looks like to me that would be a bigger find.

Either way, we need to keep doing what we can to advance the causes - donating, petitioning, etc. The government has got to be made aware that herpes is a bigger deal than they want to admit andn we can no longer allow them to sweep it under the rug anymore!

[Sweet7]

I had to restate this. First of all, Struggle, thank you for responding for me. For Realistic Gal, Good question. I actually had heard others state that on this site and did a little digging. That stat must have come from here:

http://www.herpes-coldsores.com/messageforum/showthread.php?25847-Dr.-Bloom-University-of-Florida-Complete-FAQ-A-MUST-READ

However in this interview with Dr. Bloom, they mention the cases of people with ocular herpes who need annual treatment at 38k/year with 20k new cases each year. That would lead someone into thinking that these treatments are due to the patient going blind. Getting the facts right is very important so thank you for pointing this out to me. I am now thinking that since there are 400k cases of some form of ocular herpes in the US that it is more serious than I originally thought. So, I will be looking for those stats to see if you are correct. See, when you have already lost some sight in one eye (not due to ocular herpes), you tend to be more appreciative of the sight you do have. I don’t know about you, but if herpes lesions appeared in my eyes, I would be quite freaked out and can only imagine the pain induced by that. Then to find out that there’s a chance that I may have to get cornea transplants some time in my future so I can keep my sight would be a nightmare. So I will be more careful about pointing out stats because the person I mentioned in an earlier thread thought that ocular herpes are rare cases, but as you pointed out, it’s not as rare as many may think. I understand the reason as to why pointing out the seriousness of HSV can cause physiological effects, unlike you; I actually have HSV so I know those effects very well. However, I don’t agree with so many who think focusing on better treatment or a cure is a negative thing. I have run into quite a bit of that. That was my point about people who say it is no big deal. The reality for many people suffering from HSV, it is that it is a big deal.

[camomile]

I know we are talking life and death but if they could come up with something to improve the quality of life for MILLIONS who live 30 more years it damn sure looks like to me that would be a bigger find.

Either way, we need to keep doing what we can to advance the causes - donating, petitioning, etc. The government has got to be made aware that herpes is a bigger deal than they want to admit andn we can no longer allow them to sweep it under the rug anymore!

That, I really do agree. After having looked at the program re. how vaccine for HPVs got kick started in UK, it looked to me that it's simply a matter of research data, mounting evidence of substantial health risks associated with HSVs getting recognized by the government Health Minister looking at these hard data and then decide to go ahead with new vaccine program.

As for vaccine, I tend to suspect the governments could get that ready given the right circumstances.

[Sweet7]

From some research that I have read, HPV wasnt considered a deadly virus, partially because many strains have been found to not cause cancer, but a few of them do. It took a push for research to prove that certain stains of HPV can cause cancer. Once it was found out, then the kick start began as comomile has stated. There are other herpes viruses that are suspected as the cause of many of the cases of MS, CFS, Epilepsy. The HHV6 Foundation is currently giving small grants for researchers to do studies to prove that claim. As far as I know, only one researcher was studying the link of HSV-1 to Alzheimers and I don't know if she was able to continue those studies. I saw an interview with the top specialist of Alzheimers in the US and they didn't mention anything about the link. They were more concerned about treating the disease to prolong life, but my question is, when do you stop just treating? Then I've read articles where oncology specialist state that they are trying to turn cancer into a chronic disease instead of curing it. I'm thinking they are talking about only certain kinds of cancers and maybe that's all that can be hoped for, but I sure hope it's not just so they can continue with just treatments. It is true that they can't short cut the research. That could be deadly as the article in this thread is proof of. So, they have to do studies in steps. Part of how those steps are taken has much to do with funding. My post about hearing back from Vical is proof of that. They have tried to develop many vaccines before for HSV from what I hear, but failed. Investors are leary of getting burnt on those deals. Then there was a huge mistake made by a scientist working in genetics and that slowed down that area of research. There is still so much unknown about this virus. But more has been learned in the past 3 years then the last 30. Again, I based that statement on research that I have read. I do think with all of us in the same boat, working together, we can make a difference and the right circumstances will come along. I like that Cullen and Bloom are collaberating even though they are a long way off from putting something on the market. At least there is collaberation going on. I would really like to see more of that because of all the directions that can be taken to wage war against this virus. Hopefully other scientist are collaberating and we just don't know about it. I think researchers are required to publish thier findings for studies from NIH grants. I just don't know if any of them are paying attention to each others work. Let's hope so.

[RealisticGal]

For Realistic Gal, Good question. I actually had heard others state that on this site and did a little digging. That stat must have come from here:

http://www.herpes-coldsores.com/messageforum/showthread.php?25847-Dr.-Bloom-University-of-Florida-Complete-FAQ-A-MUST-READ

However in this interview with Dr. Bloom, they mention the cases of people with ocular herpes who need annual treatment at 38k/year with 20k new cases each year. That would lead someone into thinking that these treatments are due to the patient going blind. Getting the facts right is very important so thank you for pointing this out to me. I am now thinking that since there are 400k cases of some form of ocular herpes in the US that it is more serious than I originally thought. So, I will be looking for those stats to see if you are correct. See, when you have already lost some sight in one eye (not due to ocular herpes), you tend to be more appreciative of the sight you do have. I don’t know about you, but if herpes lesions appeared in my eyes, I would be quite freaked out and can only imagine the pain induced by that. Then to find out that there’s a chance that I may have to get cornea transplants some time in my future so I can keep my sight would be a nightmare. So I will be more careful about pointing out stats because the person I mentioned in an earlier thread thought that ocular herpes are rare cases, but as you pointed out, it’s not as rare as many may think. I understand the reason as to why pointing out the seriousness of HSV can cause physiological effects, unlike you; I actually have HSV so I know those effects very well. However, I don’t agree with so many who think focusing on better treatment or a cure is a negative thing. I have run into quite a bit of that. That was my point about people who say it is no big deal. The reality for many people suffering from HSV, it is that it is a big deal.

Thanks for the answer. I was just thinking --- wow! --- 50,000 instances of blindness secondary to ocular herpes per year would be HUGE! How could that not be something we were hearing about?

The possibility that there are 50,000 new cases of ocular herpes/year is far higher than I would expect, given the proclamation that it is "rare." Even 20,000 new cases/year seems to me hardly "rare."

[camomile]

Sweet7

Brilliant post.

So many excellent points.

I guess, we really need to support that H foundation to be launched asap (as I mentioned before) What we need is some centralized action for well orchestrated effort (and money) to support more research.

Unfortunately, it seems there's not an awful lot of "behavioural" differences amongst HSV 1, 2 and 6. They all like to interfere with neurons and these eventually might start to comproise CNS (if v persists long enough and if you're unlucky etc e.g. as you say about Epilepsy etc).