CLL and cold sores

[Scruffydog]

Hi Everyone, since August last year I have experienced repeated bouts of cold sores. Usually every three weeks or so a new one starts.

is this a common thing with CLL? Does anyone have any advice regarding how to stop it occurring all the time. I’ve spoken to various pharmacists who just recommend the normal over the counter medication but it doesn’t stop the repeat infections.

I was diagnosed will CLL in October 2012 and am still on Watch & Wait

Thank you in advance, any advice is gratefully received, Penny

[ygtgo]

Hi scruffydog

I get more than my fair share, there's one just dying off right now.

Like yourself it's just the normal over the counter medication ... it doesn’t stop the repeat infections.

ygtgo

[Hidden]

Do you have oral herpes? I've had it for 40 years and since my recent CLL diagnosis I am experiencing more outbreaks which are more severe then before the diagnosis. I take valcyclovir as a daily med to keep them at bay, which doesn't work 100% of the time.

[Scruffydog in reply to Hidden]

Oral herpes? Aren’t cold sores a form of herpes? Are you talking about sexually transmitted herpes?

In the past I would occasionally get one in August after being away in a hot country and not using lip salve but this has been continuous since returning from holiday last August.

[Hidden in reply to Scruffydog]

Oral herpes is herpes simplex virus type 1 (HSV-1) . If you only get one cold sore per year then its probably not oral herpes.

More info from the CDC: cdc.gov/std/herpes/stdfact-...

[Big_Dee in reply to Hidden]

Hello esn1967

Well that is interesting, I have maybe one cold sore a year.

[SofiaDeo]

Lysine supplementation daily may help keep infection rate down, since this amino acid helps keep the virus in the nerve root. I generally take 1 gm a day, upping this to 3 times a day if I break out. Limiting foods high in arginine may help also, since arginine helps the various herpes viruses thrive. I no longer can eat a lot of nuts, for example, or I get breakouts more often. Nuts are higher in arginine than lysine, so I now limit them. I do eat some "high arginine foods" like chocolate and oats, but avoid the nuts. You may prefer to avoid oats and chocolate to keep the peanut butter hahaha

webmd.com/diet/top-foods-hi...

killherpesvirus.com/diet-fo...

So to summarize, higher lysine and lower arginine can help prevent and shorten breakouts:

pubmed.ncbi.nlm.nih.gov/308...

drugs.com/medical-answers/i...

Make sure you wear sunscreen lip balm, UV can contribute to breakouts, especially in dry windy areas where lips are chapped/cracked.

[RosettaClapp in reply to SofiaDeo]

Since diagnosis with CLL some 15 years ago now I have had frequent bouts of cold sores especially during the winter I take daily lysine which with topical acyclovir controlled them more or less. But they got a lot worse just before treatment was necessary and I now continue with the lysine and take acyclovir tablets twice daily during the winter months which seems to stop them entirely

[Stamphappy in reply to SofiaDeo]

SofiaDeo, this response is excellent! Thank you for sharing this 😊

[Big_Dee in reply to SofiaDeo]

Hello SofiaDeo

Happy to see you back, been skiing? My uncle was on ski petrol into his eighties. I will stick with the peanut butter.

[LeoPa in reply to SofiaDeo]

All kinds of red meat, fish and eggs are high in lysine. webmd.com/diet/top-foods-hi...

White meat and plant stuff is high in arginine.

Conclusion: stick to fatty red meat and fish with some eggs 🐠🙂.

[UKfulloflife]

Afraid cold sores - and warts come to that - just love a compromised immune system. And yes, both are part of the Herpes virus family. I've had the warts, but not the cold sores, and they were a problem until I started treatment, then 'voila!' they disappeared. I honestly don't think you can stop the cold sores from happening, so I would suggest that you contact your hospital team. I was told that if the warts became a real problem they could give me something to deal with them. Maybe they could do the same for persistant cold sores?

[Scruffydog]

thank you all so much for your comments and advice. I will get some lysine and see where I get the acyclovir tablets. It’s saving me a fortune on lipgloss 😊 but I do miss kissing my husband 😘

[julieS3]

I’ve been experiencing bothersome cold sores since November. I read back in previous posts to try using SLS free (sodium laurel sulphate) toothpaste and that worked well for awhile keeping them at bay. Also cutting down on spicy and acid foods. I mentioned it to my specialist and he prescribed the acyclovir 2 times a day. I still get minor soars which quickly go away which is much better than before. The doctor told me this is a common thing with CLL.

[SofiaDeo in reply to julieS3]

If you have a breakout, you probably would be wise to use a small spatula or your finger to take toothpast out of the tube before putting it on your toothbrush. When the lesions have that clear liquid, it is extremely contagious, and who knows if it can "live" a day or so on wet toothbrush, which might then get onto the toothpaste. I doubt it's like how certain bacteria can contaminate products, but even an extra day or so of herpes sores are awful.

Do your lips tingle or otherwise prodrome before a breakout? There are short term high dose protocols to help prevent them coming out, talk to your doc if you do. I happen to prodrome, and nowadays can often prevent or only get a single small lesion, compared to what I used to get. I use valacyclovir not acyclovir so IDK if there even is a prodrome protocol using that drug.

[GolfNole]

I had recurrent cold sore (yes, it is herpes) on my lower lip for years, long before being diagnosed with CLL. It would flare up with too much sun or in cold/dry climate. Not long after diagnosis (summer 2020), I had a bad flare up such that I went to see my dermatologist. He actually excised a portion and sent to lab just to be sure it wasn’t something more (it wasn’t). He put me on Valacyclovir (1 gram tablet daily). I have not had a flare up since I started on the medication!

[Astro617]

I take acyclovir as a preventative medication and haven't had a breakout in decades. I could probably stop the medication but I'm afraid of the virus coming back. Before I took the medication I used diet to try to control the outbreaks. It helped a lot. The amino acid arginine can exacerbate herpes. The amino acid L-Lysine can help quell it. Foods high in arginine are peanuts, chocolate and legumes. Meats are higher in L-Lysine. I took Lysine supplements because I don't eat meat. Turns out Lysine supplements can raise cholesterol a little bit so I stopped that supplement. If you eat a lot of foods high in arginine you could try reducing those or cutting them out for a while and see if you have any luck. herpes.org.nz/about-herpes-...

[gardengirl80]

I don't have any advise on how to prevent the cold sores but can tell you that my husband and I both find Carmex very effective in curing them quickly.

[Vlaminck]

Cold sores are a herpes virus. Though CLL immune suppression may be allowing them to develop, they are not caused by CLL. May I mention monolaurin, which is sold commercially as Lauricidin. I take it twice a day -- it not only is good for you (derived from coconut oil) but it can disrupt viruses that are "enveloped" (wrapped in a lipid is how I picture it). Both covid and all herpes viruses are enveloped so this might at least help.

[LeoPa]

Hi, you may want to check this out:

youtube.com/watch?v=ktPaulo...(Not working as expected?)

[Scruffydog]

thank you LeoPa, I picked up Lysine yesterday and started this morning so fingers crossed it helps