Jarisch–Herxheimer reaction

[sometexan84]

Oh okay my doctor was wanting to test me in four weeks so I’ll ask her about re-testing later on as well. So you think if herx doesn’t show up that it may mean the Valtrex isn’t helping?

Well, when was your last EBV test? Is there a specific reason your doc wants to test you again in 4 weeks, so soon?

All I can say is, I had herx reaction for every successful bacteria and viral infection treatment. Some lasted only 1 day. Also, if you didn't get the herx, that would go against the experience of most others.

 

[morgan_25]

Yes a couple years ago. Past infection.

Well, from what you describe, aside from the reflux part, we have a lot of the same troubles. Everything makes me sick too.

Okay I have read a lot of things that suggests HHV-6 can cause a lot of issues within the digestive track.

And I get reflux only if I eat or drink something super acidic or eat too quickly, but I for sure don’t have as much of a sensitivity to medications and/or supplements that you do. I am sorry that really sucks that anything that could potentially help you makes you feel worse. 😞

 

[morgan_25]

Well, when was your last EBV test? Is there a specific reason your doc wants to test you again in 4 weeks, so soon?

All I can say is, I had herx reaction for every successful bacteria and viral infection treatment. Some lasted only 1 day. Also, if you didn't get the herx, that would go against the experience of most others.

My last EBV test was in May. I had other tests done too that showed I was vitamin d deficient and my b12 was low. So I had taken prescription grade vitamin d and over the counter b12 to you those numbers. Since all of that, I was suppose to be retested anyways, but she wants to do it all at once cause she said she doesn’t like to have people get poked more than they should I guess.

When these tests get done, I will also be getting tested for CMV and HHV-6. Thank you, I wasn’t sure how common it was for people to herx because I asked my doctor about how people seem to do on it and she said she has had patients do perfectly fine without really any side effects. This kind of made me believe that maybe herx wasn’t very common, so that’s good to know and something to look out for then.

 

[EddieB]

Okay I have read a lot of things that suggests HHV-6 can cause a lot of issues within the digestive track.

This study is from Dr Pridgen, HSV in the digestive tract
http://www.tuscaloosasurgery.com/PDF/biliary-gastro-herpes-simplex-ibs-final-copy.pdf

And I get reflux only if I eat or drink something super acidic or eat too quickly

For the first 20 years or so of illness, I didn’t have reflux. It was all fatigue, nausea, and IBS like symptoms.

 

[sometexan84]

she wants to do it all at once cause she said she doesn’t like to have people get poked more than they should I guess.

If you're not paying more, like how I pay for each test, then yea go for it. And her thoughts on it are logical as well.

I wasn’t sure how common it was for people to herx

I should mention, yours is different from mine. Mine is latent re-activation. You're still going through the initial infection. So I can't speak to that as much, and would understand if there was a difference in herx-reactions from those treating an initial infection vs those treating an active re-infection. Just a thought.

 

[sometexan84]

This study is from Dr Pridgen, HSV in the digestive tract
http://www.tuscaloosasurgery.com/PDF/biliary-gastro-herpes-simplex-ibs-final-copy.pdf

Probably more than HSV is Enterovirus B, bacteria like Streptococcus and Enterococcus and H. pylori. Along with HSV and any herpes virus really.

 

[toyfoof]

Okay cool I know that I am unfamiliar with the number because my test was quite different, which I think you saw or I told you it was just a positive/negative test. So does it help your EBV to go inactive, or just lower the numbers?

Honestly my doctor is mostly interested in managing symptoms. We test for EA titers every few months to make sure there hasn’t been a big spike (or a surprising but welcome drop) but there is direct correlation between amount of Valtrex I take and severity of flu-like symptoms. On 1g per day I have pretty much daily sore throat, sore muscles, weakness, fatigue. On 2g, they are very mild, mostly only appearing as PEM when I’ve overdone it. I can go up to 3g or 4g if I’m in a flare or feel like I’ve caught a virus. But we’ve settled on 2g for regular maintenance.

 

[sometexan84]

Re-tested EBV, already got results back.

3 months into Valacyclovir treatment, and still pretty high EA Early Antigen, but it has gone down.

1/20/20
(EA) Early Antigen: 30.1

7/30/20
(EA) Early Antigen: 27.1

I had the 30.1 back in January. So it's possible that I was higher than 30.1 when I started treatment. Testing again in 3 months.

 

[EddieB]

Looks like your numbers are coming down.
My last one was 70.3...

 

[sometexan84]

Looks like your numbers are coming down.
My last one was 70.3...

Eesh, idk man... how bad to you want to get better?

btw, i should also mention that I've been doing 1.5 - 2 grams/day.

4 grams/day is the actual recommended amount. I'm prob going to try and up my dose. I'd like to start doing 3 grams/day.

And according to this, it takes 6 years of 500 mg of valacyclovir once each day to eradicate 99% of EBV

 

[EddieB]

Eesh, idk man... how bad to you want to get better?

More than you can imagine. I can’t do this much longer.

btw, i should also mention that I've been doing 1.5 - 2 grams/day.

I did 1 500 mg and it burned up my stomach and esophagus. So that’s not going to work. I don’t know if famivir or acyclovir is any less caustic. Otherwise it’s going to have to be treated with supplements.

 

[toyfoof]

I just checked my latest titers -- EBV EA = 35.5. My numbers have been about the same for the past couple years.

 

[sometexan84]

More than you can imagine.

Then we have to get you on track.

There's def a specific reason for the reaction you're having to Valtrex. I spent a few minutes Googling just now, and saw tons of references to (Herpes) Esophagitis, w/ the burning sensations you're describing. Articles I saw talk a lot about the burning, acid reflux, and HSV infection.

Have you done the HSV testing?

Do you have trouble swallowing? Sore throat, heartburn?

---EDIT---

I just saw that the cure for Herpes Esophagitis is Valtrex . hahahhaha

 

[EddieB]

Then we have to get you on track.

Thank you for your concern.....
There's def a specific reason for the reaction you're having to Valtrex. I spent a few minutes Googling just now, and saw tons of references to (Herpes) Esophagitis, w/ the burning sensations you're describing. Articles I saw talk a lot about the burning, acid reflux, and HSV infection.

Have you done the HSV testing?

What I have done,
CMV - negative
Parvo - negative
EBV - positive IgG past infection
HH6 - positive IgG past infection

I’m not seeing HSV test results. I have a phone appointment with the immunologist monday, so I can ask for more tests.

Yes, I did see the herpes esophagitis stuff. Is there another way to kill it besides valcyclovir?

 

[sometexan84]

What I have done,
CMV - negative
Parvo - negative
EBV - positive IgG past infection
HH6 - positive IgG past infection

I’m not seeing HSV test results. I have a phone appointment with the immunologist monday, so I can ask for more tests.

You might want to see if there's like a general STD panel to do, that includes HSV, and the other main ones. So many different STD-related infections keep poking up in studies, like all the time. I think it's worth getting the all-encompassing panel done for sure.

Yes, I did see the herpes esophagitis stuff. Is there another way to kill it besides valcyclovir?

If you're referring to HSV, for sure! 1st step is testing though.

 

[EddieB]

If you're referring to HSV, for sure! 1st step is testing though

But wouldn’t everyone on the planet test positive for hsv?

 

[sometexan84]

But wouldn’t everyone on the planet test positive for hsv?

HSV? Herpes Simplex Virus, 1 and/or 2? No, def not

 

[EddieB]

I just saw that the cure for Herpes Esophagitis is Valtrex . hahahhaha

Yeah, can I rolling up and smoke it?😳

edit, just kidding I don’t smoke anything

 

[EddieB]

You might want to see if there's like a general STD panel to do, that includes HSV,

HSV? Herpes Simplex Virus, 1 and/or 2? No, def not

Had a phone appointment with the immunologist today, and asked about this testing. She said she didn’t see the need, that she’s fairly convinced I have HSV1 along with EBV, and we should just focus on the treatments. What do you think?

 

[morgan_25]

This study is from Dr Pridgen, HSV in the digestive tract
http://www.tuscaloosasurgery.com/PDF/biliary-gastro-herpes-simplex-ibs-final-copy.pdf



For the first 20 years or so of illness, I didn’t have reflux. It was all fatigue, nausea, and IBS like symptoms.

Yeah they diagnosed with with IBS-D when I was like 18 maybe.