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Rare HPV infection - Need professional opinion
Hi.
This is my first time posting here :)
It's going to be a bit long, but it's crucial.
A small introduction:
I'm 25 years old, healthy, very active and diet cautious man.
About two and a half years ago i've had protected sex with a female, who I later found out, had condyloma.
6 months later I noticed small bumps in the region of my penis. They were immediately treated with Crytotherapy.
Since I also have many sebum glands (Fordyce's condition), it was pretty hard to differentiate the warts from the glands, so I assume I had some sebum glands frozen off "just in case".
Since i'm pretty paranoid about diseases, and like my conscious to be clear, I avoided sex since the first wart.
About 6 months ago (2 years after the time of infection and about 1.5 years from the first warts) I took a PCR test that came back positive for BETA-HPV strain 107 - A sub-specie of the Beta-HPV 9, which is closely associated with EDV condition (Epidermodysplasia Verruciformis), and is not associated common genital warts/condyloma or cervical cancer causing strains (which are of Alpha Papilloma type). A few weeks ago I took the test again, and it came back positive (again, strain 107, BETA HPV).
I did quite an extensive web research about the BETA Papilloma Virus, and as I understand, it's quite common in a latent condition in the general public, but only "erupts" in people who are susceptible of Beta strands - A very small percentage of the population.
Still, information about Beta HPV is so scarce, leaving me confused about my further actions :(((
Since I REALLY(!!!) want to go back to my normal life and i'm already over the normal median HPV clearance time, I simply don't know what to do now :( I doesn't look like I have warts, nor EDV, and the many Dermatologists I've been to simply don't know what to tell me, since it looks like I know more than they do, in this subject.
I'd love to hear your opinions about this issue.
Thank you very, very much and have a great day!!!
P.S,
If you know any HPV specialists or researchers than can have some input on this issue, please let me know.
I'm really depressed here :(
This is my first time posting here :)
It's going to be a bit long, but it's crucial.
A small introduction:
I'm 25 years old, healthy, very active and diet cautious man.
About two and a half years ago i've had protected sex with a female, who I later found out, had condyloma.
6 months later I noticed small bumps in the region of my penis. They were immediately treated with Crytotherapy.
Since I also have many sebum glands (Fordyce's condition), it was pretty hard to differentiate the warts from the glands, so I assume I had some sebum glands frozen off "just in case".
Since i'm pretty paranoid about diseases, and like my conscious to be clear, I avoided sex since the first wart.
About 6 months ago (2 years after the time of infection and about 1.5 years from the first warts) I took a PCR test that came back positive for BETA-HPV strain 107 - A sub-specie of the Beta-HPV 9, which is closely associated with EDV condition (Epidermodysplasia Verruciformis), and is not associated common genital warts/condyloma or cervical cancer causing strains (which are of Alpha Papilloma type). A few weeks ago I took the test again, and it came back positive (again, strain 107, BETA HPV).
I did quite an extensive web research about the BETA Papilloma Virus, and as I understand, it's quite common in a latent condition in the general public, but only "erupts" in people who are susceptible of Beta strands - A very small percentage of the population.
Still, information about Beta HPV is so scarce, leaving me confused about my further actions :(((
Since I REALLY(!!!) want to go back to my normal life and i'm already over the normal median HPV clearance time, I simply don't know what to do now :( I doesn't look like I have warts, nor EDV, and the many Dermatologists I've been to simply don't know what to tell me, since it looks like I know more than they do, in this subject.
I'd love to hear your opinions about this issue.
Thank you very, very much and have a great day!!!
P.S,
If you know any HPV specialists or researchers than can have some input on this issue, please let me know.
I'm really depressed here :(
Sorry, I meant to say a variation of HPV 9. (It was Species 2, HPV 9)
I looked at the site you posted and if you look at all of the HPV’s I listed in my post, they are listed on your site with the addition of the HPV’s over a 100. This leads me to believe that HPV 107 is a subgroup or a variant, since 107 is listed under HPV 9. This means that the HPV 107 genome would be the same as HPV 9 genome but in a subgroup it differs between 2 & 10% from the original HPV 9 and for a variant less than 2%. So it appears to be a subgroup or variant. (Just some information, there are a number of HPV 16 variants, most people think HPV 16 but do not realize there are sub groups or variants)
This is some info on Beta-papillomavirus. I think you know most of this but I added some comments. They are usually found in cutaneous lesions in humans. Infections exist in latent form in general population (which appears that many people may have this) activated under conditions of immune suppression (that is not just a normal cold). Also referred to as EV-HPV types due to its close association with the disease Epidermodysplasia verruciformis (EV). (Notice close association not a definite relationship or correlation. If there was they would say). HPV 9 most frequently causes cutaneous lesions, but there are reports of DNA in mucosa. (This would be really rare in the mucosa and no one would know the relationship at present). Commonly associated (remember associated) with lesions in EV or immune suppressed patients. Mostly benign lesions but there are a few reported malignant lesions. HPV 9 has also been found after transplant surgery, so what came first the HPV or the compromised system. No one knows this and there is still a lot of speculation regarding HPV which is really not good medicine. HPV 107 has been found in actinic keratosis (usually found on the face and can be a precancer) but it is also found in normal healthy skin.
You might want to read this abstract. http://vir.sgmjournals.org/cgi/content/abstract/89/10/2467
When articles talk about your immune system being compromised they do not usually mean by a cold or a respiratory infection, it is usually an immune compromised disease such as AIDs, major immune diseases such as Lupus and others or your mother being exposed to DES (before your time 50’s & 60’s). While you usually get a cold because your immune system is slightly down (caused by exposure to the virus, stress, being tired etc, not immune compromised), you also recover quickly because of your immune system with natural antibodies. I would doubt that the lesion that you found was related to your Respiratory infection.
And you need to remember that HPV have been around forever. They usually clear and they are usually benign. They are only starting to isolate some of them. I really don’t like HPV testing and in women it is causing a lot of false positives and worry—no different that what you are going through right now. There are very few accurate HPV tests but many companies are making money and profiting from it.
The reason that I specifically asked what kind of PCR test you had done is that all the ones in the US are “off label” and have to develop their own standards in their lab (However, they need to be CLIA certified). The strength of PCR based tests lie in its capacity to detect very small amounts of HPV DNA but at the same time, strict lab procedures and controls are critical in reducing contamination related to false positives. Some of these can give false results due to the way they test and their procedures. There are a lot of grey areas in HPV DNA testing and if I were you I would find out the name of the test used and the accuracy (You may only get the name, also ask for the company that manufactures it and they may not reveal the accuracy) Some of them need a longer DNA sequence in order to identify genotypes and some are not able to do that. The reason I asked what PCR test was done is there are a number such as Southern Blot, In situ Hybridization, Real Time PCR, and Micro-array DNA chips. There is only one that I know in the US that is 100% accurate because it compares its results with the gen bank for 100% accuracy.
Again this is where I think a little knowledge is scary and the fact that your physician could not explain this I think presents a problem. No one should do a test and charge for a test if they cannot explain it. He needed to call the lab and speak with the pathologist and if the pathologist did not know the answer, then they needed to find out to the best of their ability. The manufacturer of the test (or the lab doing it) has to have some statistics, in order to offer it and they need to know if that particular HPV has had false results. There are a lot of grey areas in HPV DNA testing and some Dr.’s rely on the fact that their patients won’t ask questions. Kudos’ to you for wanting to find answers.
My feeling is that you are probably fine. I would follow your physician’s advice and wear condoms. I think you are worrying unnecessarily. I’m not sure you will truly get a definitive answer but you have a better chance of being harmed in a car accident than with an HPV infection. You also realize that HPV testing is a virology test and that it does not predict cancer. You might find it helpful to add Zinc to your diet, people with skin conditions are often Zinc deficient. If you were to get another “bump”, and I hope this does not happen but I would have it biopsied and excised, not cryo. I think you are young and should just start to enjoy your life. There are a lot of things in life that are beyond our control. Go and have fun…
If you plan to go further with this—First, I think you would need to know if you had the rare recessive gene for EV. This would require genetic testing and I have limited knowledge in that area. Find out what HPV DNA test you had done. And you might want to google Hi Fi DNA and read some of the information on that site. Dr. Lee is a very bright pathologist. If you ever need to be retested that is where I would go.
Sorry this was so lengthy…Good Luck!
I looked at the site you posted and if you look at all of the HPV’s I listed in my post, they are listed on your site with the addition of the HPV’s over a 100. This leads me to believe that HPV 107 is a subgroup or a variant, since 107 is listed under HPV 9. This means that the HPV 107 genome would be the same as HPV 9 genome but in a subgroup it differs between 2 & 10% from the original HPV 9 and for a variant less than 2%. So it appears to be a subgroup or variant. (Just some information, there are a number of HPV 16 variants, most people think HPV 16 but do not realize there are sub groups or variants)
This is some info on Beta-papillomavirus. I think you know most of this but I added some comments. They are usually found in cutaneous lesions in humans. Infections exist in latent form in general population (which appears that many people may have this) activated under conditions of immune suppression (that is not just a normal cold). Also referred to as EV-HPV types due to its close association with the disease Epidermodysplasia verruciformis (EV). (Notice close association not a definite relationship or correlation. If there was they would say). HPV 9 most frequently causes cutaneous lesions, but there are reports of DNA in mucosa. (This would be really rare in the mucosa and no one would know the relationship at present). Commonly associated (remember associated) with lesions in EV or immune suppressed patients. Mostly benign lesions but there are a few reported malignant lesions. HPV 9 has also been found after transplant surgery, so what came first the HPV or the compromised system. No one knows this and there is still a lot of speculation regarding HPV which is really not good medicine. HPV 107 has been found in actinic keratosis (usually found on the face and can be a precancer) but it is also found in normal healthy skin.
You might want to read this abstract. http://vir.sgmjournals.org/cgi/content/abstract/89/10/2467
When articles talk about your immune system being compromised they do not usually mean by a cold or a respiratory infection, it is usually an immune compromised disease such as AIDs, major immune diseases such as Lupus and others or your mother being exposed to DES (before your time 50’s & 60’s). While you usually get a cold because your immune system is slightly down (caused by exposure to the virus, stress, being tired etc, not immune compromised), you also recover quickly because of your immune system with natural antibodies. I would doubt that the lesion that you found was related to your Respiratory infection.
And you need to remember that HPV have been around forever. They usually clear and they are usually benign. They are only starting to isolate some of them. I really don’t like HPV testing and in women it is causing a lot of false positives and worry—no different that what you are going through right now. There are very few accurate HPV tests but many companies are making money and profiting from it.
The reason that I specifically asked what kind of PCR test you had done is that all the ones in the US are “off label” and have to develop their own standards in their lab (However, they need to be CLIA certified). The strength of PCR based tests lie in its capacity to detect very small amounts of HPV DNA but at the same time, strict lab procedures and controls are critical in reducing contamination related to false positives. Some of these can give false results due to the way they test and their procedures. There are a lot of grey areas in HPV DNA testing and if I were you I would find out the name of the test used and the accuracy (You may only get the name, also ask for the company that manufactures it and they may not reveal the accuracy) Some of them need a longer DNA sequence in order to identify genotypes and some are not able to do that. The reason I asked what PCR test was done is there are a number such as Southern Blot, In situ Hybridization, Real Time PCR, and Micro-array DNA chips. There is only one that I know in the US that is 100% accurate because it compares its results with the gen bank for 100% accuracy.
Again this is where I think a little knowledge is scary and the fact that your physician could not explain this I think presents a problem. No one should do a test and charge for a test if they cannot explain it. He needed to call the lab and speak with the pathologist and if the pathologist did not know the answer, then they needed to find out to the best of their ability. The manufacturer of the test (or the lab doing it) has to have some statistics, in order to offer it and they need to know if that particular HPV has had false results. There are a lot of grey areas in HPV DNA testing and some Dr.’s rely on the fact that their patients won’t ask questions. Kudos’ to you for wanting to find answers.
My feeling is that you are probably fine. I would follow your physician’s advice and wear condoms. I think you are worrying unnecessarily. I’m not sure you will truly get a definitive answer but you have a better chance of being harmed in a car accident than with an HPV infection. You also realize that HPV testing is a virology test and that it does not predict cancer. You might find it helpful to add Zinc to your diet, people with skin conditions are often Zinc deficient. If you were to get another “bump”, and I hope this does not happen but I would have it biopsied and excised, not cryo. I think you are young and should just start to enjoy your life. There are a lot of things in life that are beyond our control. Go and have fun…
If you plan to go further with this—First, I think you would need to know if you had the rare recessive gene for EV. This would require genetic testing and I have limited knowledge in that area. Find out what HPV DNA test you had done. And you might want to google Hi Fi DNA and read some of the information on that site. Dr. Lee is a very bright pathologist. If you ever need to be retested that is where I would go.
Sorry this was so lengthy…Good Luck!
Holly, thank you very much for your answer!
I'm not sure you're right about the BetaHPV 107 being a variation of HPV 2:
http://www.uniprot.org/taxonomy/151340
Beta ->9->107
Another important fact that I have to add is that a few weeks ago I got a lower respiratory infection, and a few days later I noticed a small, rather brownish round and slightly raised spot on my upper pubic area. I really have no idea that it actually was a wart, since I don't recall having any warts that looked like that (It could have just been a small raised nevus), but I still got it cryo'd, as my dermatologist wasn't 100% sure it wasn't a wart.
Maybe it was just a coincidence that I noticed this thing when my immune system was weaker than usual. Again, I have no idea.
But still, having a positive PCR test (taken only from the genital area) 1.5 and 2 years after the initial warts, is quite depressing to say the least :(
I had this test done by a dermatologist, who sent the sample to a professional lab that does these tests.
This dermatologist and the others that I asked simply said that they don't know what to recommend me to do, as 107 is not a common type (and no one knows whether it's low or high risk), like for example the Condyloma/Alpha Papillomas.
Their only advice was to always use a condom and just make sure that no new warts are present.
This obviously means a paranoid sex life and forgetting about the partner using birth control.
Obviously condom is not really effective in HPV prevention... :(
Honestly, I don't know what to do now. The virus is still there and I may spread it to a new partner. Crap! haha :(((
I'm not sure you're right about the BetaHPV 107 being a variation of HPV 2:
http://www.uniprot.org/taxonomy/151340
Beta ->9->107
Another important fact that I have to add is that a few weeks ago I got a lower respiratory infection, and a few days later I noticed a small, rather brownish round and slightly raised spot on my upper pubic area. I really have no idea that it actually was a wart, since I don't recall having any warts that looked like that (It could have just been a small raised nevus), but I still got it cryo'd, as my dermatologist wasn't 100% sure it wasn't a wart.
Maybe it was just a coincidence that I noticed this thing when my immune system was weaker than usual. Again, I have no idea.
But still, having a positive PCR test (taken only from the genital area) 1.5 and 2 years after the initial warts, is quite depressing to say the least :(
I had this test done by a dermatologist, who sent the sample to a professional lab that does these tests.
This dermatologist and the others that I asked simply said that they don't know what to recommend me to do, as 107 is not a common type (and no one knows whether it's low or high risk), like for example the Condyloma/Alpha Papillomas.
Their only advice was to always use a condom and just make sure that no new warts are present.
This obviously means a paranoid sex life and forgetting about the partner using birth control.
Obviously condom is not really effective in HPV prevention... :(
Honestly, I don't know what to do now. The virus is still there and I may spread it to a new partner. Crap! haha :(((
You may really be over thinking this, but I understand from your posting that you are upset and worried.
What DNA test did you have done and where was it done? And was it a tissue sample and if not what was tested?
It appears EDV is rare and is usually associated with HPV 5 and HPV 8. It would appear on rare occasions that people with EVD have had other HPV’s identified but that does not mean it is the cause. There may be a relationship and maybe not. It appears that you are not positive for any of the common high risk or low risk and that is a good thing but even if you were, these usually clear. Most of us have recessive genes that never kick in. I’m not familiar with HPV 107 but I would think that it is low down on the risk level. Beta-Papillomavirus are associated with the skin, the genus name is Beta-Papillomavirus, then there are sub groups called Species-1, 2, 3, 4 & 5 for Beta's. Then Types 38, 23, 22, 9, 37, 17, 80, 15 (These are for Species 2) and then subtypes. I am not familiar with 107 but from what you said you would have Family—Papillomaviridae, Genera—Beta-Papillomavirus, Species—2, Type—9, Subtype—107. My thinking is this is just a variation of HPV 2 which is more often related to common and plantar warts.
And are you saying that whoever ordered the tests could not explain this to you…
It is very possible you went through cryo for no reason and that it was all related to Fordyce.
Yes, you should be able to go and enjoy your life without being worried.
What DNA test did you have done and where was it done? And was it a tissue sample and if not what was tested?
It appears EDV is rare and is usually associated with HPV 5 and HPV 8. It would appear on rare occasions that people with EVD have had other HPV’s identified but that does not mean it is the cause. There may be a relationship and maybe not. It appears that you are not positive for any of the common high risk or low risk and that is a good thing but even if you were, these usually clear. Most of us have recessive genes that never kick in. I’m not familiar with HPV 107 but I would think that it is low down on the risk level. Beta-Papillomavirus are associated with the skin, the genus name is Beta-Papillomavirus, then there are sub groups called Species-1, 2, 3, 4 & 5 for Beta's. Then Types 38, 23, 22, 9, 37, 17, 80, 15 (These are for Species 2) and then subtypes. I am not familiar with 107 but from what you said you would have Family—Papillomaviridae, Genera—Beta-Papillomavirus, Species—2, Type—9, Subtype—107. My thinking is this is just a variation of HPV 2 which is more often related to common and plantar warts.
And are you saying that whoever ordered the tests could not explain this to you…
It is very possible you went through cryo for no reason and that it was all related to Fordyce.
Yes, you should be able to go and enjoy your life without being worried.
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