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.

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.

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.

I opened another post to ask a different question and I don't know if this is that phantom 'nerve' pain another poster mentioned. While there is a high chance I had HSV-1, most likely, the fact it was extremely problematic getting acyclovir / Valacyclovir to do anything, as if my body was resistant along with my complaints of tingling / cooling / heating / burning sensations right of my lips and even on my face, as well as down into my chin, has my physician wondering if HSV is really what it is. In about a week, I'm going in for follow up bloodwork to check my white blood cell count which was a 3.3 (scale is 4 - 10.5). Historically, I've always been either low/mid 4s or high 3's so my PCC isn't too worried but definitely wants it up. I've started taking the ABCDE vitamins to help. My father is deficient in B12 and my sister has been with iron, so they are going to test both of those. They are also going to test for my HSV antibodies and said if they are negative, they question the original HSV diagnosis. Those sensations I mentioned I basically felt them about 10 days in to my lips showing blisters, and the best analogy I can think of is a stove top spiral heating up till it is red...a specific area of my right upper lip "felt" like it was glowing red (it wasn't), but I'd feel a more general heat/tingle/cool sensation in my cheek and even up to cheekbone and chin. So this continued for the next 15+ days I was on valacyclovir. I was also on cephalexin (antibiotic) during this time as well and the PCC had me stop both of them. Over the next 4 days I started feeling better and even 'normal', with those sensations all but going away. Today, they came back a little bit, more in the chin and a little bit in the right side of the face, but if the previous ones were a 7/10 in scale, these are closer to a 2. Lips look normal, albeit still a bit dry (and it's been cold here which doesn't help). The PCC suggested I see a dermatologist due to the sensations I was getting and to consider the possibility it wasn't HSV due to the nature of how it started in one corner of the lip, then went to another, then the middle, then my lower limp was swollen. It was just not the typical pattern they see with HSV. My googling hasn't helped me either with the face / chin sensations. Cancer, Lupus, MS, Cerebral Palsy, etc... and the low white blood count along with these potentials is concerning...I'm really hoping I see that count on the upswing when I get that blood test. I did have whey protein today...and I can't recall if I got the sensations prior to consuming it or not...but tomorrow I'll not have any and see how I do. Thanks for coming to my Ted Talk.

So follow up. Had bloodwork done...because they don't like that I've been on acycolvir this long and the concern is something underlying. For what it is worth, I still get face/mouth/lip/ type tingles that come and go, and the other day I felt it quite a bit on my chin. Definitely a cool (temperature) feeling. The 2 things that stood out from the CBC panel, was a low white blood count and a slightly elevated MCHC. WBC = 3.3 (range 4-10.5) and MCHC = 36.5 (range 32-36). The WBC being the most concerning that we want to track down, but it's not overly concerning to my doctor only because my past results have been 4.2 (in June), a 5.5 in 2020 (however, this testing range was 3.3 - 10.5, so not sure how 5.5 relates to my other numbers), and 3.8 in 2018. Point being it is not like I ride at 6 and now I'm 3.3. I'm hoping this is more a vitamin deficiency issue and not something more serious. The antihistimine and antivirals both aren't doing me favors with WBC. So we paused them and in the meantime I will treat topically if necessary. Visually, my face and lips look fine, its just that I tend to get a light burning / tingle that sporadically pops up during the day. I've started supplementing with Vitamin A, B12, C (raw whole vitamin c), D3, K, and folate (b9). I don't normally take these (except vitamin c and d3) and I know my diet isn't the best. My multivitamin supplementation is iffy at best, I used to be on it all the time. Other than this issue, my health has been fine (haven't been getting sick), no bodily pains, etc.. I suffer from chronic headaches (have most my life) with the occasional migraine. Anyways curious if the blood panel numbers mean anything to anyone

Just an update. No new changes in my buttock region other than the sores/dots not itching anymore and maybe even reducing in size a bit. I also noticed yesterday not much of a reaction after taking VAL. I still occasionally get tingling and warmth in my lips and they are still dry...so I continue to apply either Abreva to them or Acyclovir (5%) cream. So I think the Val is taking hold finally, IMHO given the lack of any new activity. The doctor I spoke with did say while it doesn't say it on the bottle, one CAN take 2 zyrtec a day (i.e; 1 morning, 1 night) but only recommended that in my case given my histamine / inflammation issues. I'm not sure how much of a role that has played in yesterday or not. He also recommended Raw Whole Vitamin C, and not the ascorbic acid stuff) because the body much more readily consumes it over the other stuff. I also got magnesium glycate per his recommendation for the same reason. So going to keep trying to boost my immune system up. So crossing my fingers that day. So basically, Pre Sept 27, I was doing 500mg Val morning, 500mg Val night. On Sept 27, Talking to my local pharmacist that afternoon, after discussing the dosing possibilities, I added another 500mg a few hours after the morning dose, and then did 1000 at night. So on Sept 27, I had taken 2000mg. I was feeling like absolute shit that night (I had a migraine, felt like throwing up, so I was borderline ready for ER) and talked to the On call doctor of my PCP, and that is when we decided to go the shingles route of 3000mg a day. So Sept 28 through today I've been on 1000mg Val 3x/day. So I'm on day 4 of 7. Now the rub is...the doctor I spoke with yesterday, who was on call and could only go off info I told him over the phone, said he doesn't think it was shingles due to not experiencing anything on either side of the meridian of my body, specifically that I had a dot on one buttock, and 3 dots on another. He said typical shingles ultimately takes a candycane type pattern along the nerve pathways. So if this is simply HSV-1, I know it is possible you can get them on the buttock, but not sure if that is due to exposure there or simply that is where the body felt the weakest and made them pop up. As of right now, only my top/bottom lip, and buttocks have experienced anything, and the buttocks have been mild at best (compared to photos I've seen online, i.e; no groupings, just 3 individual dots within 1/2 inch from each other).

So last night I felt some warmth and slight tingles on my butt and when I looked I do have 3 small white tipped blisters on my right buttock, and 1 on my left. Nothing else so far...but this is blowing my mind that they keep coming despite being on various dosages of medicine for 25 days. I know I am on 1000mg 3x a day for 'shingles' therapy, but wonder if I need to talk to my dr about increasing that. This is day 3 following that regiment. I had to take a benedryl last night to try and calm down those post-Val dosage 'heat' flareups. I then took 1 more benedryl about 30m before my morning dose which seemed to kind of help. But I took a zrytec a few hours ago which from what I read...means I probably shouldn't take any more benedryl today. I am taking l-lysine recently...not sure for those dealing with active episodes what the proper daily dosage is. I'm trying to cut out a lot of stuff from my diet too. I normally take chocolate whey protein powder but can't do that now it seems. So made a meal of chicken, peppers, eggs, refried beans, and avacado as I've heard some of these are high in lysine. I just don't understand how I'm throwing the kitchen sink at this thing and it's fighting so hard. I do have bloodwork scheduled...in which they will check white blood count, hiv (no clue how this could be positive), and inflammatory markers. Side note, and it's something that has been on my mind. Back in August, I was mowing my yard and got stung in the ankle. It hurt like a bitch. Very painful. It was a single hole so I suspect wasp or bee, but couldn't tell. I had itching and redness for a month around it. Seems like my body holds onto the markings (now that I think about it) of bug bites longer than I would suspect. So I just wonder if my body was fighting something like that and it led to this. Tossing darts.

Thank you Mr. Hopp. That is encouraging to know the reactions post-dosing aren't uncommon. It just shocks me that I've been on some form of acyclovir since Sept 5 and still dealing with this crap. I know the first time getting cold sores/ shingles is the worse...so not sure if my experience is 'normal' or a bit excessive. Really crossing my fingers once I'm over this...it goes back into hiding for a while. I read too that the prednisone can sometimes piss off the virus...and maybe ultimately that was a mistake going on it.

Hi all, first post. Looking to gain some insight as I have nobody to talk to about it and you can only get so much info from doctors. I'm 42, male, and been married 20 years. My oldest son who is in HS has gotten cold sores since he was an infant. We suspect just from being passed around and kissed in his early years. I've never had a cold sore, that I can remember. I've had canker sores, but nothing on the outside of my lips. I had chicken pox as a child. Around September 3, life was peachy. Wife and I fooled around. She has never exhibited cold sores either. We are each other's first and only (met in HS). Later that evening, felt like I had some wind burn or a sun burn type feeling on my upper lip after a concert. Used chapstick thinking that is all it was. A couple days went buy and I was noticing some redness and the traditional 'cold sore' bubbles...but they were small . I went to the CVS minute clinic and upon review, they felt it was a cold sore. So they put me on Acyclovir, 400mg, 5x a day for 5 days. After the 5 days, I didn't really feel things were getting any better. Went to my PCP, and upon inspection gave me a new prescription of Acyclovir, 400m, 3 day a day for 10 days. He also prescribed methylprednisolone (steroid) to 'calm things down' as he put it. It was a 6 day program. Double checked my bloodwork as of June 2023, and said it looked fine...as the concern was if I was immunocomprised since I wasn't responding to treatment. About day 5, I did feel like I was getting closer to my original self..lips felt less dry, didn't see bubbles, etc... Around day 8, things were coming back and a bit angrier. So far up to this point, it was mostly in my upper right lip...but now this new flareup was coming back around the upper left lip. I called my PCP and explained things were aggressively getting worse. I felt like my lower lip was showing signs up being swollen, but no sores. They put me on 30 days of ValAcyclovir (500mg 2x a day) referring to it as the suppressive technique. We are on September 20 at this point. So in the first few days, I didn't feel like I saw any improvement. It wasn't getting a whole lot worse, but did feel like it was moving toward the inside of my upper lip. I also was starting to see slight bubbles on the bottom lip. I'm just blown away at how it just kept going and going. For the record, I probably did the wrong thing... by often getting a dry tissue and lightly dapping the lip to 'dry' it up rather than letting it just do the scab. I also had reused my own chapstick multiple times...so I wonder if I was spreading it that way. About 3 days ago (Sept 26) I went and got abreva. I do feel like my cold sores were reducing prior to using Abreva...but that stuff definitely helped and basically has kept my lips looking relatively normal the last 3 days. Probably the last 10 days or so, I have felt occasional tingles and warmth in different parts of my body...such as face, one time on my butt, one time on my arm. This is what led to the potential shingles concern. I've begun feeling it a bit on my tongue as well (tingling and very mild warmth/burning/numbness, as if you ate something to spicy and your tastebuds were pissed), but not painful. I had small light red dots on the first 1/3 of my tongue. I showed the picture to my PCP, and they said it looked ok and didn't appear to be ulcers. Speaking with my doctor, they raised me to 1000mg 2x a day. I did this for 1 day before talking with a nurse practioner when I was borderline ready to go to the ER because on top of a migraine (I was nauseous), I was concerned about whether I truly had something wrong with my immune system that had changed. I was negative for covid, I haven't felt sick though I occasionally have sinus issues (I do take zyrtec). Speaking about my symptoms, she wondered if this was more shingles related given my various sensations...and recomended the shingles route which is 1000mg 3x a day for 7 days. This is day 2 of that regiment. They also gave me acyclovir cream. What I don't know about is whether is if that is supposed to do the same thing as abreva. I went thru my first bottle of abreva in 3 days and bought a 2nd one, but halted use to give the A-cream a chance. I felt a pretty consistent tingle/light burn for probably the first hour of using it. One observation I made (which prompted this post) was why I tend to feel warmth/flareups (I get tingles around my upper lips specifically) about 30minutes taking a 1000mg Val pill and it can sometimes last off/on for a couple hours. Is this normal? Is this just my body fighting the virus and the medication? Basically in the last 48 hours, I "feel" like I'm keeping this thing at bay and slowly returning to normal..but I still get that heat/burning at random times. My lips, visually speaking, look ok. The nurse practioner wonders if this has been shingles the whole time, but manifested itself through the cold sores initially. Or, did both hit me at the same time? They said I likely could have had this for a long time and it stay dormant and some trigger happened that brought it out. I don't have concerns that I got it from my wife, she has shown zero signs of anything and we have been sexually active our entire relationship. I'm just looking for some feedback based on the details I've provided if any of that rings true for anyone else or if something else seems to be going on? I know I will be getting some follow up bloodwork and seeing a dermatologist next. Thank you for listening.