Looking for a good oral HSV doc in Southern California
February 13, 2025 9:33 AM Subscribe
My partner has had persistent oral herpes for over a year at this point, and persistent difficulty getting doctors appointments through her Obamacare/Covered California insurance. She is thinking about going out of network and is seeking recommendations. Some additional questions below the fold.
The Health Issue
Basically, she has perceived oral herpes around her mouth, chin, and closer toward the cheek somewhat nonstop for the last year and change. She takes an antiviral (valacyclovir), and attests that she is not in any discomfort. I personally don't typically see anything that looks like a sore, irritation, inflammation, etc. But she says occasionally she feels a tingle and can see irregularities in her skin that she clocks as HSV. (Occasionally I do see what she's talking about but it looks like anything ranging from a zit to a histamine response. She has had oral HSV for several years, and my understanding has always been that over time and with antiviral treatment, these infections should be less consistent, less frequent, and less persistent.) There's just an overall irony that the efficacy of the antiviral makes it harder to know whether she technically has an outbreak and is shedding.
This situation causes a few problems. First, for both of us, it impacts intimacy. Second, it annoys her. Third, and this one is from me: it's my sense that she either doesn't actually have active HSV going on all year, or if she does, she has bigger immune issues going on that she needs to have reviewed ASAP. (We're in good conversation about my thoughts there, it's not weird or an overly sore aspect of our relationship.)
Looking for Care
We both know that her HSV isn't going anywhere, technically, and that the treatments available, broadly speaking, are not very different from what she's already doing. What she is looking for is a doctor with expertise in this area, who will give her thorough care and actually talk to her about her situation, address whether she has other issues going on that prevent clearing infection, provide some considerate discussion about how to assess when she has an infection and when one has cleared, and how to approach physical intimacy given her situation. At this point, she's willing to pay a premium at least for an assessment or an initial couple visits.
So, questions include:
1) What kind of doctor are we talking about here? Is there a named specialty here? The internet seems to think that basically there's no specialty here other than dermatology as needed. But surely there must be some key search terms to find a doctor who has a focus in this area, since the persistence is a viral issue and not a skin problem?
2) Do you or a friend have a doctor in Southern CA whom you'd recommend for this specific situation? (i.e. the HSV question or the immune question) There's a lotta fancy people with herpes in LA, who do they see?
3) Is there a place other than Yelp to best answer this question?
4) Within Covered California, are there some kind of secret words she should be using to improve her access to care? She's in one of the shitty HMO systems they have, which doesn't help things.
Miscellany
Since it's anonymous and I won't be able to just pop in and answer things, I'll anticipate a few comments.
1. She is doing as well as she can on sleeping.
2. She is not drinking to any excess and she generally is eating well, is not living a sedentary lifestyle, etc.
3. Basically the hang up with Covered CA is that she has to have one doctor recommend her to another doctor and that first doctor's office is inept and slow and has made no progress getting her scheduling figured out. The fires in LA have also impacted availability of doctors, but that's only a recent excuse.
The Health Issue
Basically, she has perceived oral herpes around her mouth, chin, and closer toward the cheek somewhat nonstop for the last year and change. She takes an antiviral (valacyclovir), and attests that she is not in any discomfort. I personally don't typically see anything that looks like a sore, irritation, inflammation, etc. But she says occasionally she feels a tingle and can see irregularities in her skin that she clocks as HSV. (Occasionally I do see what she's talking about but it looks like anything ranging from a zit to a histamine response. She has had oral HSV for several years, and my understanding has always been that over time and with antiviral treatment, these infections should be less consistent, less frequent, and less persistent.) There's just an overall irony that the efficacy of the antiviral makes it harder to know whether she technically has an outbreak and is shedding.
This situation causes a few problems. First, for both of us, it impacts intimacy. Second, it annoys her. Third, and this one is from me: it's my sense that she either doesn't actually have active HSV going on all year, or if she does, she has bigger immune issues going on that she needs to have reviewed ASAP. (We're in good conversation about my thoughts there, it's not weird or an overly sore aspect of our relationship.)
Looking for Care
We both know that her HSV isn't going anywhere, technically, and that the treatments available, broadly speaking, are not very different from what she's already doing. What she is looking for is a doctor with expertise in this area, who will give her thorough care and actually talk to her about her situation, address whether she has other issues going on that prevent clearing infection, provide some considerate discussion about how to assess when she has an infection and when one has cleared, and how to approach physical intimacy given her situation. At this point, she's willing to pay a premium at least for an assessment or an initial couple visits.
So, questions include:
1) What kind of doctor are we talking about here? Is there a named specialty here? The internet seems to think that basically there's no specialty here other than dermatology as needed. But surely there must be some key search terms to find a doctor who has a focus in this area, since the persistence is a viral issue and not a skin problem?
2) Do you or a friend have a doctor in Southern CA whom you'd recommend for this specific situation? (i.e. the HSV question or the immune question) There's a lotta fancy people with herpes in LA, who do they see?
3) Is there a place other than Yelp to best answer this question?
4) Within Covered California, are there some kind of secret words she should be using to improve her access to care? She's in one of the shitty HMO systems they have, which doesn't help things.
Miscellany
Since it's anonymous and I won't be able to just pop in and answer things, I'll anticipate a few comments.
1. She is doing as well as she can on sleeping.
2. She is not drinking to any excess and she generally is eating well, is not living a sedentary lifestyle, etc.
3. Basically the hang up with Covered CA is that she has to have one doctor recommend her to another doctor and that first doctor's office is inept and slow and has made no progress getting her scheduling figured out. The fires in LA have also impacted availability of doctors, but that's only a recent excuse.
i mean.. the WHO estimate of HSV-1 (oral herpes) was as high as 50 percent of people? By adulthood I kind of just assume everyone has it, if not active viral shedding then we've all been exposed and could have it lying dormant.. The Johns Hopkins hit I came across estimated it at 50-80.. If she's actively distressed by it it even without a visible flare going on then that distress is worth treating, of course, but given that she's on an oral anti viral, I'd think the viral load in terms of intimacy and risk of transfer would be very very low.. I guess if you're coming here you've already googled that, though. If she is telling her medical people that she is not in discomfort, and they know she is taking valcyclovir AND she has no visible flare, these would be reasons they aren't referring her -- ie, they don't think there is any additional treatment needed or possible. Would they tell her this directly? hmm, maybe not.. sometimes when medical professionals think you're over reacting they don't say it directly they just dismiss you, which.. yeah. not great but.. true.
If the situation is that she is feeling chronically terrible and ill since first knowing she was infected with this now latent hsv-1, I sure believe that's possible - covid 19 is a virus and we now understand it can cause long term elevation of inflammation long after initial infection - the kind of doctor that will be curious about states of chronic inflammation and malaise is not going to be the same kind of doctor that deals with hsv-1 (that'd be your GP in the US).. If she wants someone to get deeply curious about why she has lingering malaise, even if she suspects it's correlated to when she first experienced outbreak of oral herpes, she should probably mention that incidentally and focus on her other functional symptoms and seek a referral for those from a rheumatologist or maybe a few other, generally quite hard to get in to see, sorts of specialists.
if you have any cash to throw at this, you can now get direct to consumer labs by using a site like ulta labs, or a few others - it's actually cheap for basic stuff like a cbc or a thyroid panel (25 bucks), say, but a little pricey for some more left field panels (a hundred ish and up, or down, depending greatly on which and how many tests), but it is fast and if something shows up on there you'd have some "proof" that a specialist is warranted. You pay for the test and print it out, then take the print out to a Quest diagnostics and have them to the draw, then you have direct access to your results.
I'm not very knowledgeable about dealing with medi-cal but I do know that it will be very hard to be taken seriously about feeling ill in the US healthcare system if she is focusing on it being HSV-1 related, I would guess, medi-cal or no medi-cal. 'Course if you left something out then .. this advice will be off the mark. this one is a bit of head scratcher.
well - while i was writing this long winded comment I think telegraph managed to say it much more succinctly above, lol. so, also just ..what telegraph says
posted by elgee at 10:06 AM on February 13 [1 favorite]
If the situation is that she is feeling chronically terrible and ill since first knowing she was infected with this now latent hsv-1, I sure believe that's possible - covid 19 is a virus and we now understand it can cause long term elevation of inflammation long after initial infection - the kind of doctor that will be curious about states of chronic inflammation and malaise is not going to be the same kind of doctor that deals with hsv-1 (that'd be your GP in the US).. If she wants someone to get deeply curious about why she has lingering malaise, even if she suspects it's correlated to when she first experienced outbreak of oral herpes, she should probably mention that incidentally and focus on her other functional symptoms and seek a referral for those from a rheumatologist or maybe a few other, generally quite hard to get in to see, sorts of specialists.
if you have any cash to throw at this, you can now get direct to consumer labs by using a site like ulta labs, or a few others - it's actually cheap for basic stuff like a cbc or a thyroid panel (25 bucks), say, but a little pricey for some more left field panels (a hundred ish and up, or down, depending greatly on which and how many tests), but it is fast and if something shows up on there you'd have some "proof" that a specialist is warranted. You pay for the test and print it out, then take the print out to a Quest diagnostics and have them to the draw, then you have direct access to your results.
I'm not very knowledgeable about dealing with medi-cal but I do know that it will be very hard to be taken seriously about feeling ill in the US healthcare system if she is focusing on it being HSV-1 related, I would guess, medi-cal or no medi-cal. 'Course if you left something out then .. this advice will be off the mark. this one is a bit of head scratcher.
well - while i was writing this long winded comment I think telegraph managed to say it much more succinctly above, lol. so, also just ..what telegraph says
posted by elgee at 10:06 AM on February 13 [1 favorite]
Have her evaluated by the Oral Medicine department at USC. She may need a referral from a dentist.
I see and treat HSV all the time, as do many dentists. A local dentist may even know of an Oral Medicine specialist closer. I'm biased, but long association with physicians has convinced me that oral conditions are not their strongpoint and they defer to us when they can.
posted by OHenryPacey at 10:19 AM on February 13 [1 favorite]
I see and treat HSV all the time, as do many dentists. A local dentist may even know of an Oral Medicine specialist closer. I'm biased, but long association with physicians has convinced me that oral conditions are not their strongpoint and they defer to us when they can.
posted by OHenryPacey at 10:19 AM on February 13 [1 favorite]
Did she begin taking daily valacyclovir right after her first outbreak? I remember reading a study a long time ago that suggested immediate use discourages the immune system from fighting the virus, leading to weaker defenses in the long run. In my own experience with severe, continuous HSV-1 outbreaks, I had to go without suppressants for about a year before they had any effect at all, and then it took 7-10 more years (and a lot of lifestyle changes) for my immune system to mostly master the virus. Even when I was lucky enough not to have lesions I was shedding HSV round the clock and had prodrome symptoms like tingling and skin changes just as your partner describes. The constant stress on my system caused me to develop a devastating post-viral illness with brain fog, fatigue and chronic neuroplastic pain.
I later discovered I had underlying problems, including an autoimmune disorder, a circadian rhythm disorder, and mast cell activation syndrome. When I treated these issues, my HSV-1 attacks decreased. I also had to do a lot of work figuring out and controlling my viral triggers, which ended up including alcohol, caffeine, chocolate, nuts, hormonal flux, poor sleep, emotional stress, sunshine and friction.
I tried many kinds of specialists but in truth, no one could really help. Tracking my triggers, solving other issues, and giving it time is what worked.
posted by lloquat at 11:22 PM on February 13
I later discovered I had underlying problems, including an autoimmune disorder, a circadian rhythm disorder, and mast cell activation syndrome. When I treated these issues, my HSV-1 attacks decreased. I also had to do a lot of work figuring out and controlling my viral triggers, which ended up including alcohol, caffeine, chocolate, nuts, hormonal flux, poor sleep, emotional stress, sunshine and friction.
I tried many kinds of specialists but in truth, no one could really help. Tracking my triggers, solving other issues, and giving it time is what worked.
posted by lloquat at 11:22 PM on February 13
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The best specialist to treat persistent HSV is an infectious disease specialist. They can also evaluate for an immune problem that might predispose someone to frequent (or constant!) HSV outbreaks.
That said, absolutely no lesions (or skin changes that are so subtle that only she can see them) is suggestive of an alternative diagnosis. Many things can cause a persistent sensation of tingling similar to the prodrome of HSV, including electrolyte abnormalities, thyroid disease, vitamin deficiencies, etc. A good internist can work these up. I will gently add that anxiety and other diseases that are primarily psychiatric can cause these symptoms.
I frequently see patients who have seen a lot of doctors and not received satisfactory treatment. A common thread among many of them is that they present to doctors with their diagnosis instead of their symptoms. Doctors are human and often rushed. If you walk in and say "I'm having HSV outbreaks, it feels just like the HSV outbreaks I always have," most of them are going to give you valacyclovir and not think too much about it. If you walk in and say "I'm having a tingling, itching feeling around my lips and mouth, it's not uncomfortable but I'm scared to be intimate with my partner because I'm worried it could be something contagious," you are more likely to have a productive encounter.
posted by telegraph at 9:58 AM on February 13 [10 favorites]