Severe recurring HSV1 outbreaks despite antiviral treatment

[TryingToCope1]

First post here, hi!

I'm 27 years old. I have been getting cold sores on my mouth since I was around 4 or 5. My dad and grandmother have both gotten them for years so I likely acquired it from one of them accidentally. 

My entire life, I got 1-2 cold sore outbreaks per year. In May 2013, I had an anaphylactic reaction, and consequently developed chronic fatigue syndrome that was diagnosed later that year. Even then, I was only getting 1-2 a year. 

I started graduate school in August 2014. I got a cold sore after having my teeth whitened in September 2014. I had zero outbreaks until March 28, 2015. From March 28, 2015 to October 19, 2015, I had 41 outbreaks on my mouth, chin, and nose. 41. Those 41 outbreaks occurred despite being on 1g/day of Valtrex (500mg BID) in addition to using topical Denver and Acyclovir. I had cultures done and they came back positive. 

In October, I asked my dermatologist to try Xerese, which she obliged. Additionally, she put me on oral acyclovir 800mg FIVE times per day as a "last ditch effort" and recommended I see a infectious disease specialist. In that time frame, I had tried oral acyclovir, valacyclovir, famciclovir, and penciclovir. 

I had the most success with acyclovir 800mg FIVE times/day along with Xerese applied every night and as needed. I had one outbreak in November and one in December. I was outbreak free for most of January, until January 24. Since January 24, I have had 6 outbreaks. Three on the side of my mouth, two on my chin, and now one massive one directly in the middle of my lip.

I take 2000mg of free-form Lysine daily, 800mg acyclovir five times/day, 1000mg Vitamin C daily, multivitamin, and a few other supplements per my chronic fatigue specialist. I have an IUD so I don't get a monthly period. I cannot even fathom how stress alone can cause all of this.

I use straws for everything, no metal silverware (only disposable plastic), no lipstick, no sun exposure, lips stay hydrated with the same balm I've used for years. Chapstick is changed out any time an outbreak is suspected, or once a week - whichever comes first. My toothbrush is thrown out and a new one is used once a week. 

This has made my life a mess. My partner and I have been together for 3 years and we live together. We haven't really truly kissed in over a year because I've either had an outbreak or I have been fearful of having an outbreak. He's been tested and has no traces of HSV in his system. I have reactivation of Herpes6 and EBV in my system, in addition to Coxsackie and Parvovirus.

I have no idea what to do. Any tips, advice, resources, words of wisdom would be appreciated. I live in Florida.

Edited February 1, 2016 by TryingToCope1

[WilsoInAus]

I'm not really sure what to say, but it appears there is an immune system issue at play. This often starts with a thyroid function test, have you had this?

[TryingToCope1]

4 minutes ago, WilsoInAus said:

I'm not really sure what to say, but it appears there is an immune system issue at play. This often starts with a thyroid function test, have you had this?

I have had a full thyroid panel done at my endocrinologist. I've had viral testing done, as well, which is how I found out about the viral reactivations. Allergist has ruled out recurring minor reactions. 

[WilsoInAus]

I don't quite understand how you can be diagnosed as having HHV6 or EBV reactivations unless you had a spinal tap etc. I suspect all you have done is confirm their presence and this is true for 90% of the population.

Do you have immune issues? Hives? Lupus? Have you had your appendix out in recent years? Are your blood sugars normal; is diabetes type 2 possible?

[TryingToCope1]

3 minutes ago, WilsoInAus said:

I don't quite understand how you can be diagnosed as having HHV6 or EBV reactivations unless you had a spinal tap etc. I suspect all you have done is confirm their presence and this is true for 90% of the population.

Do you have immune issues? Hives? Lupus? Have you had your appendix out in recent years? Are your blood sugars normal; is diabetes type 2 possible?

I had a lumbar puncture and bloodwork. EBV and HHV6 IGG and IGM were reactive. Parvovirus and Coxsackie only IGG (I think) were reactive.

Chronic fatigue is implicated with the immune system but there's no certainly as to how. No hives, no lupus. I had my gallbladder out in 2009. I am hypoglycemic. I had gastric bypass in 2012 and have had hypoglycemia since then (fasting levels are high 60's-low 70's).

[Sanguine108]

Hey @TryingToCope1  Have you ever considered an acupuncture and Chinese medicine doctor?

Chronic viral infections do bear a burden on their host, but you've also had gastric bypass so I'm assuming your weight is also an energetic burden. An IUD is plugging up a major part of your physiology.

Personally, I don't believe in things being "reactivated".  The virus is always trying to push out and the host is constantly suppressing it.  When the host is depleted and tired then the virus expresses itself with ease.   

Antivirals only inhibit viral replication.  There's nothing about healing underlying, root issues that everyone has going on.   Typically, if people do have a vulnerability somewhere in there body and they get herpes then they have these weird symptoms arise as part of it. 

So what would a Chinese medicine doc do for you?   He/She would treat you as a whole person.  They would address some root/constitutional issues you have, as well as the uncomfortable branch manifestations like outbreaks, fatigue and whatnot.  

needles are like resetting the electrical workings of your body and clearing any obstructions from your system's homeostatic efforts.  Then there are herbs which will greatly enhance your progress. You will lose weight, you'll have less outbreaks, you'll have more energy...

Unfortunately, not all practitioners are the same, just like MD's, there are amazing practitioners and there are not so amazing ones.   Except the MD's toolkit is extremely limited.  MDs have been doing this for a over 100 years with all the modern drugs.  Chinese medicine has been doing this for over 5000 years.   Try a system of medicine that knows how to treat disease and you at the same time.

[TryingToCope1]

5 hours ago, Sanguine108 said:

Hey @TryingToCope1  Have you ever considered an acupuncture and Chinese medicine doctor?

Chronic viral infections do bear a burden on their host, but you've also had gastric bypass so I'm assuming your weight is also an energetic burden. An IUD is plugging up a major part of your physiology.

Personally, I don't believe in things being "reactivated".  The virus is always trying to push out and the host is constantly suppressing it.  When the host is depleted and tired then the virus expresses itself with ease.   

Antivirals only inhibit viral replication.  There's nothing about healing underlying, root issues that everyone has going on.   Typically, if people do have a vulnerability somewhere in there body and they get herpes then they have these weird symptoms arise as part of it. 

So what would a Chinese medicine doc do for you?   He/She would treat you as a whole person.  They would address some root/constitutional issues you have, as well as the uncomfortable branch manifestations like outbreaks, fatigue and whatnot.  

needles are like resetting the electrical workings of your body and clearing any obstructions from your system's homeostatic efforts.  Then there are herbs which will greatly enhance your progress. You will lose weight, you'll have less outbreaks, you'll have more energy...

Unfortunately, not all practitioners are the same, just like MD's, there are amazing practitioners and there are not so amazing ones.   Except the MD's toolkit is extremely limited.  MDs have been doing this for a over 100 years with all the modern drugs.  Chinese medicine has been doing this for over 5000 years.   Try a system of medicine that knows how to treat disease and you at the same time.

I am not sure why you assumed I need to lose weight. I'm currently at my ideal weight. 

 

I I have considered herbal medicine but I have a lot of allergies and my allergist advised against it. The few times I tried something natural, I had a negative reaction. 

[VVK]

How are your iron levels? What's the value on the range?

How are your vitamin D levels?

What are your dietary sources of fat and how much fat (grams) on average do you consume on a daily basis with your diet?

[TryingToCope1]

2 hours ago, VVK said:

How are your iron levels? What's the value on the range?

How are your vitamin D levels?

What are your dietary sources of fat and how much fat (grams) on average do you consume on a daily basis with your diet?

Ferritin levels are normal, around 80. 

D is normal, don't know the exact levels but they are within normal range.

Fat is mostly oil based and meat based. I only eat around 20-30g per day at most. I had gastric bypass and fats are one of the the things that cause me a lot of discomfort.

[Sanguine108]

I'm sorry I didn't mean to go there like that. I was just reading  and interpreting the best I can online.

But some chinese med (cm) logic on allergies.  The lung and spleen-pancreas are involved.  This is the immune sys, your biological judge of whether something is good or bad to you.  If it is weak and can't discern what's good or bad, if it's damaged, or if there's some blockage then it will act innapropriately and allergic reactions result.

fortunately, treating this will also help with the herpes outbreaks. Because the lungs relate to the skin and the immune system and the spleen is that magnificent lymph organ that's always taking care of the viral waste.  I can't stand herpes. So annoying.  

Not trying to harp on this but western med personel don't know the consequences of their actions.  And ppl pay so much and wait so long to see them that they're almost obliged to prescribe something.  I'm going to stop on that. But you know, whatever natural product you used probably wasn't for you.  That's another on these boards, ppl complain of how some herb or remedy caused them a lot of pain, discomfort, made symptoms worse... Well, depending on the symptoms, that's further diagnostic evidence for that person's vulnerabilities/problems.  It's hard to diagnose yourself when you're not familiar w a paradigm that understands how foods/herbs interact w your physiology.  Cm does though.

Schizandra (wu Wei zi) is a good herb for allergies. But it's not the end all be all. It's nourishing and has the highest levels of antioxidants of any fruit on earth.  But that means nothing if one so congested that it can reach the areas that need nourishment.  There are many cm formulas out there that are geared specifically for ppl w allergies and they're mech of action is to clear away the gunk in the biological pipes and tonify the Lu-sp.  but if you goto a practioner, they'll assess, diagnose and treat you according to their training and experience.  And Florida has the largest pop of cm practioners next to Cali.  I'm actually from Fl.

oh also you're saying how you have hypoglycemia, well that's spleen-pancreas.  So right now, it's clear that your spleen-pancreas needs attention.  If you just got acupuncture and some direct heat(moxibustion) to some points then I know you would gain SIGNIFICANT benefit.

another option would be homeopathy, although I think your situation need some stronger action and then homeopathy can play the energetic maintenance later on.

Edited February 1, 2016 by Sanguine108

[VVK]

12 hours ago, TryingToCope1 said:

Ferritin levels are normal, around 80. 

D is normal, don't know the exact levels but they are within normal range.

Fat is mostly oil based and meat based. I only eat around 20-30g per day at most. I had gastric bypass and fats are one of the the things that cause me a lot of discomfort.

Ferritin levels are low-normal at 80, since the range runs anywhere between 10 to 350 for "normal". Just keep that in mind for later.

The following is just my opinion - I'm not a professional/doctor, so while addressing these issues may help your health, it might or might not improve your HSV breakouts.

Gastric bypass likely has a role to play in this. How long ago and how much weight loss did you experience as a result? It's either caloric deficiency playing havoc on your immune system, a nutritional deficiency of some kind in one or multiple vitamins or minerals, or a combination.

I'm thinking you probably aren't absorbing enough fat because you're already eating under the required daily amount (50 grams) and you're probably not actually getting the full 20-30 grams that you do consume due to the bypass. Consider pancreatic enzyme replacement (lipase, like Creon) to help with fat absorption.

[TryingToCope1]

19 hours ago, VVK said:

Ferritin levels are low-normal at 80, since the range runs anywhere between 10 to 350 for "normal". Just keep that in mind for later.

The following is just my opinion - I'm not a professional/doctor, so while addressing these issues may help your health, it might or might not improve your HSV breakouts.

Gastric bypass likely has a role to play in this. How long ago and how much weight loss did you experience as a result? It's either caloric deficiency playing havoc on your immune system, a nutritional deficiency of some kind in one or multiple vitamins or minerals, or a combination.

I'm thinking you probably aren't absorbing enough fat because you're already eating under the required daily amount (50 grams) and you're probably not actually getting the full 20-30 grams that you do consume due to the bypass. Consider pancreatic enzyme replacement (lipase, like Creon) to help with fat absorption.

I get iron infusions to keep my iron up. 

 

I had bypass 4 years ago and lost about 200lbs. I have been stable at my weight for over two years. The hypoglycemia did not start until after bypass and that is a normal thing after surgery. My fatigue and allergies began 3 years ago after having an anaphylactic reaction to nuts, which I had eaten my whole life and had even had that morning with no problems. 

[VVK]

So, gastric bypass --> hypoglycemia (and associated systemic effects) --> immune dysfunction (and associated systemic effects, allergies) --> recurring HSV outbreaks

What are you doing to address your hypoglycemia?

Also, I reiterate, I think you should consider looking at fat intake and lipase to help with that.

 

[Free73]

What exercise regime do you currently have?