Why do my symptoms come in waves...usually 2 or 3 waves within days of each other?

[worrieduser42]

On Thursday, I had a performance review (went good, but I was still worried/stressed).  So on Friday I started noticing some symptoms of another recurrence.  I'm trying to get bloodwork done end of this week / early next week to check a low white blood count, and so I'm trying to just deal with this using abreva (docosanol cream 10%) or my 5% acyclovir cream so the antiviral pills Valtrex doesn't drop my white blood count again. 

Basically the creams seem to have kept things calm over the weekend and I'd say Monday was generally a good day, with my lips essentially looking normal.  Then today happened, and it seems like things ramped up pretty quickly.  With the weekend occurrence, I barely felt symptoms (burning/heat / itching), but with today, it seems more agitated.  I also seem to have a bit of a runny nose...so who knows.   It seems like things go calm, then it ramps up...then calms down, and ramps up again.  I don't get why.  

It's like my body finally starts shoving it into the ground, and it says "oh that is all you got, try this" and beats the crap out of me.  So I'm really trying to just keep using the creams to get me by...and I genuinely thought after the weekend, a recurrence might be 'less' impactful since it seemed the creams did such a great job. 

So why does this thing always come back pissed? When I had my first outbreak in early September, and it essentially gave me grief until about 10 days ago, it seemed to calm down after I was given a steroid pack since the 5 day regiment of 5 pills of acyclovir a day didn't work.  Then a couple days after the steroid pack was done, it came back pissed. 

So frustrating.

[mr_hopp]

I completely understand your frustration, @worrieduser42! Dealing with recurrent herpes outbreaks can be challenging and unpredictable. The way the virus behaves can vary from person to person — and even within the same individual. And it's important to note, that for most people (regardless of the frequency and intensity of herpes outbreaks), they tend to die down dramatically after around a year. That's also what happened for me.

Stress is a known trigger for herpes outbreaks, so the timing of your symptoms after a performance review makes sense. It's like your immune system is weakened during periods of stress, allowing the virus to become more active.

The waxing and waning of symptoms can be perplexing. It's possible that during the calm periods, your immune system is suppressing the virus effectively. But when it becomes more active, the virus manages to overcome this defense temporarily.

The use of creams like Abreva and antiviral medications can help manage and alleviate symptoms during outbreaks (and daily suppressive therapy can help stave off outbreaks altogether since it brings down viral shedding 50-80%). Remember that herpes outbreaks can vary in severity, and sometimes, they can be more persistent than others.

Staying on top of your overall health, managing stress, and having a healthy diet can help strengthen your immune system and potentially reduce the frequency and severity of outbreaks. Don't hesitate to reach out to your doctor if you continue to experience recurring and bothersome outbreaks. They can provide more specific guidance and possibly adjust your treatment plan to better manage the virus.

[worrieduser42]

So, on October 23 I had an antibody test.  This was roughly 6 weeks after my initial first time symptoms.  I just got the results today...and honestly I'm a bit shocked and confused.  I also had a culture taken today because I continue to have these recurrent episodes weekly, and I had enough of a visible sore that they were able to take a culture or sample. 

So...the antibody test has me at negative.  

Range:
<=0.90 Negative
0.91 - 1.09 = Equivocal
>=1.10 = Positive

Results: 
HSV Type 1 IGG Index - 0.430 (Negative). 
HSV Type 2 IGG - 0.040 (Negative)

My PCP said typically 3-6 weeks is sufficient enough for someone to get antibodies that will show positive on a test.  It is always possible this is a false negative, though for how much 'chaos' with this situation I've been dealing with since early September, you would think something would show up.

So if the culture comes back and it is negative for HSV...I'm at a loss as to what the hell is going on.  I don't know if the culture will be to the point they can identify it as 'xyz' or if they are only checking for hsv. I assume the former. 

I did 2 rounds of the  Val-acycolvir since Thursday (2g onset, 2g 12hours later)..and then did the same on Sunday. I always feel like I get worse when on it then better. 

Confusing times.

[JJlove]

Hi @worrieduser42! I was recently diagnosed and have the same timeline as you do. They were able to take a culture from a very small sore I had which came back positive, but they said that 6 weeks isn't really enough time for antibodies to show up in blood work. It can take months before your immune system builds up antibodies. If the culture comes back negative, my recommendation would be to go back in another month to get another blood test. If you happen to have any active sores between now and then, go right away to get it swabbed as that will be the most accurate for testing.

Hoping it comes out negative but either way, you will be okay! 

[mr_hopp]

Hey @worrieduser42,

I've got to say, the medical maze can be an absolute whirlwind, can't it? Your experiences and test results are indeed a puzzler, but let's see if we can work through this together ...

Your antibody test coming back as negative, especially given the symptoms you've described, might seem a tad bewildering. @JJlove brought up a noteworthy point about the timeline of antibodies showing up in blood work. A good rule of thumb that many professionals actually suggest is waiting at least 12 weeks, which is the time it takes for most people's immune systems to produce a detectable amount of antibodies (if they do have herpes, of course).

On the topic of the valacyclovir (Valtrex by its brand name), it's odd that you feel worse before getting better on it. It might be worth discussing with your doctor about potentially adjusting your treatment or exploring other alternatives. There's also Acyclovir and Famvir as alternatives to try.

Now, about the culture taken today: it should ideally provide more clarity. Cultures typically have a higher chance of giving accurate results when taken from an active sore (if the specimen was collected correctly with enough biological matter). From NIH: "Ideally, the sample should be taken from a vesicular lesion that has been present for less than 24 h because once the lesion has begun to crust, the test sensitivity will decline ... While the test has 100% specificity for HSV-1 or HSV-2, the sensitivity depends on the stage of the lesion at the time of specimen collection. The sensitivity also varies from 75% for first episodes to 50% for recurrences."

@JJlove's advice to go back for another blood test in a month seems sound. In the meantime, if any fresh symptoms pop up, it might be a good idea to get them swabbed, as they also suggested.

Take care and hang in there!

[worrieduser42]

Thanks for the info everyone.

Sorry for all the questions and/or comments.  This last outbreak has been a bit more than the last couple.  I've noticed sometimes with my lips, especially if the bottom lip seems involved (it gets a bit swollen, but rarely have I see sores)..but I get this white residue along the edges, especially near the corners of my mouth...very similar to if you had dry mouth.  I "think" it is related to having vaseline and/or abreva on my lips. Even though the abreva seems to absorb, I just occasionally have to use a napkin to brush away the 'gunk'.   I'm not sure how common this is with someone fighting thru cold sores.