Hello, I´m a 38yo male from Germany and I´m new here. Suffering from IBS / constipation since 10 years, having increasing Herpes (same virusses as GH, but the inflammation takes place on my back, right on the spine, just above the tailbone) since 15 years. I was assuming a connection since 2016, and my doctors rejected this as fiction. One year ago I suddenly found out about the work of Yale University and contacted their lead scientist - guess what? Answered me on the same day! She told me, I wouldn´t believe how many people with the same connection got in touch with her, and that they would work hard to find anything, that could relieve the symptoms or maybe even work as a cure. How some of you already said, there´s some probability, that the colon tissue is already damaged beyond repair, but on the other hand - couldn´t it be, that the bloated colon just presses against some spinal nerves, causing these additional problems?
I´m into backpain for half a year now, and it´s on the exact spot, were the occasional inflammations appear. And on the opposite side of my body, some inches under the skin of my belly, there´s one specific point in my guts, that feels like the center of my gut problems. Both sensations feel somehow connected - most times I don´t have one without the other.
Unfortunately, I haven´t found someone yet - a virologist / gastroenterologist / neurologist etc. that could come up with an idea where and how to start. So far, this has been laughed off by most doctors, and seems to scare them off, in case this could be true...
So it´s good to hear, that there actually are doctors, that take this explanation into consideration, and I´m gonna stay on course.
For those of you, who are interested, here´s what me and Ms. Iwasaki from Yale exchanged a year ago:
Dear Ms. Iwasaki,
my name is Jan ****, I´m a 37yr old male from Germany. I recently found your article on herpes and resulting digestional problems and was actually thrilled by it. It completetly represents my symptoms and problems.
Since 2010 I have strong digestional problems and was eventually diagnosed with Irritated Bowel Syndrome. That actually means, that many doctors won´t give you any practical help after that. It´s devastating.
My life quality has decreased in unspeakable ways. My colon feels constantly clogged and in pain, bowel movents are absolutely insufficient to feel at least a little relieved.
A coloscopy was performed in 2012, but no biopsy / tissue sample was taken.
In recent years I started to develop a diagnosed herpes simplex on my back more and more often, exactly on the spine, approx. 5cm above the coccyx. Thinking about that, I remembered, that this must have been going on rather rarely over the last 15 years or so, probably starting with a glandular fever. Now I have it twice a year. I don´t think that I´ve ever had a genital herpes, though.
What you write in that article fits perfectly into the pattern of my problems. If you actually say, that virusses that are within the spine can actually move into the digestive track and cause a lot of harm there, this could be more than a potential explanation! Especially, since I feel, that the center of discomfort in my bowel (whether obstipated or not) sits right across the location of the herpes.
(My questions and her answers see below)
Again, you have my fullest respect for your work, and if you can´t answer these questions, I understand that. Still I would highly appreciate to get in contact with you or one of your colleagues about this.
Best wishes, hoping to hear from you
Jan ****
Germany
HER ANSWER:
Dear Jan,
Thank you for your inquiry. First, I want to tell you how sorry I am that you are undergoing such discomfort due to herpes infection. Second, I am delighted that you found our study of use to your condition. Please find below my responses to your questions.
Q: How great would you say the chances are, that this can actually happen to humans, provided the spine is actually directly and rather heavily infected?
A: I think the chances of this happening in humans is high.
Q: Is there by now any way your findings can be transferred onto humans and a treatment for them?
A: I wish there was. We are working on therapeutic vaccines but are far from clinical trial.
Q: Would a coloscopy with a biopsy be able to find theses corresponding virusses in the colon tissue?
A: The biopsy has to be made from the wall of the intestine, not the inner surface. This make is impossible to do. The virus replicates in the enteric neurons that live in between the intestinal muscle layer that surrounds the outer wall.
Q: In your findinds on mice, was it detectable in their colon tissue? If yes, was it wide spread or only locally?
A: Absolutely! The highest dose of virus was found in the colon (more than the genital). We do not know whether the virus spread within the colon, but I suspect this was likely, as the highest virus replication was found in the colon.
Q: Would you say, if any of this is the case, can the virus spread by itself onto other regions of the colon?
A: Again, we do not know for sure, but I suspect it. We found the virus in the bottom half of the colon.
Q: Do you think, there is / would be a way to get rid of these virusses and keep the colon from getting infected again? (Sounds too simple, but like putting a barrier between spine and colon)
A: Because the spine to colon nerve connection is important, severing this link would have a detrimental consequence. A more viable thing to do would be to block the spread using antibody. How exactly we can vaccinate people to generate such antibody is still in experimental stages. This is precisely what we are testing in animal models to see if a new vaccine strategy might work.
Q: Would it be sufficient, given that there has been no irreversible harm done to the colon, that anti-herpes drugs like for example Aciclovir could help?
A: Well, I am not sure if I would say that there is no irreversible harm done to the colon. Herpes virus infects enteric neurons and kills them. Once killed, it is very difficult to replace these neurons. Even if replaced, the virus from the spine will infect them again. Having said this, stopping this vicious cycle of infection is key. Acyclovir should help to do this.
Jan, you would not believe how many emails I am getting from patients just like you. There are so many people in the world who are suffering from the complication of herpes that involve chronic constipation. My lab members are working hard to find a treatment. Thank you for your interest in our work, and I wish you all the best.
Sincerely,
Akiko Iwasaki