Jarisch–Herxheimer reaction

morgan_25

morgan_25

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sometexan84 said:
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 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.
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Yeah, I don’t pay for them because my insurance covers all of it so I’m not too worried, but time is going by pretty quickly. It will be here before I know it.

It makes complete sense as to why it would be different. So far I am still not seeing much results, but I have heard it can take some time. My doc also put me in sumatriptan, but I feel like I am having some odd reactions to it, tight throat, head pressure, kind of that morphine, “falling through the floor” type feeling. It makes my head and arms feel super heavy and that my neck can’t hold on to my neck. Not a pleasant feeling.
 
morgan_25

morgan_25

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toyfoof said:
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.
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Okay I am on 1g a day right now. I wish I could see results with my ears throat head and neck. I definitely have some worse problems but this is so new and unfamiliar that it makes it more concerning.
 
morgan_25

morgan_25

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toyfoof said:
I just checked my latest titers -- EBV EA = 35.5. My numbers have been about the same for the past couple years.
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sometexan84 said:
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
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That’s interesting. Trouble swallowing has been a new thing for me for about the last month or so. So far no one seems to be taking it that seriously.
 
morgan_25

morgan_25

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EddieB said:
Anything that messes with your serotonin can make you feel that way. You’ll have to decide whether there is a benefit and continue, or drop it if not.

With this current flare up I’m having, I’ve had some bad headaches, neck, and left leg pain. I’m convinced it’s from the virus.
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Yeah I have my regular migraines that it seems to be helping a bit but I have this new pressure in my head and neck and throat, I think I may have mentioned that to you and the sumatriptan does not touch it.
 
sometexan84

sometexan84

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EddieB said:
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?
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Lol, what!!!!!

I thought you hadn't been tested for HSV1? What was her line of reasoning?
 
sometexan84

sometexan84

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EddieB said:
I’m beginning to think I (and maybe you too) have this viral esophagus. And I’m suspicious of HSV or zoster as the cause.
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I just want to know what y'all have for selfish reasons. BUT, might be a good idea to know for sure. I've always been suspicious of zoster myself but never did testing because I'm already using the treatment for it. But it frequently drives me crazy not knowing if I have that.

EddieB said:
That she’s already convinced I have a viral infection and the treatment is the same, valcyclovir.
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Ohhhh, ok, yea, that makes total sense. Just like what I said above. I guess there's no reason to test for something if you're going to take the treatment for it regardless.
 
EddieB

EddieB

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sometexan84 said:
I guess there's no reason to test for something if you're going to take the treatment for it regardless.
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Yeh, that and she’s pretty stressed out with the covid crap already, so I try not to ask for things not necessary.

I could go to my GP and push for more tests. But at this point not sure I see the need. With this virus, gotta weight the risk/benefit of going to clinics...

She also said that she’s seeing a lot more research and discussion of ME, concerning with people that recovered from covid but are still having fatigue.
 
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morgan_25

morgan_25

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133
EddieB said:
I’m beginning to think I (and maybe you too) have this viral esophagus. And I’m suspicious of HSV or zoster as the cause.
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After doing some research on it, I am not necessarily sure about me but from what you’ve said it definitely seems like a possibility for you. For me the pain in my throat is more like, the feeling of someone pressing down on my neck with their foot or something. I am becoming pretty convinced that the tinnitus, hypertension, neck pain, trouble swallowing, head congestion, all of it is connected somehow.
 
morgan_25

morgan_25

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133
sometexan84 said:
It's a start. I wonder if it would be better to split the pills in half and take 1/2 pill 4x day? I don't know, I'm just saying, I wonder is all..
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Well the doses are 500mg, so .5g and I take one in the morning with breakfast and one in the evening with dinner.
 
morgan_25

morgan_25

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133
EddieB said:
Yeh, that and she’s pretty stressed out with the covid crap already, so I try not to ask for things not necessary.

I could go to my GP and push for more tests. But at this point not sure I see the need. With this virus, gotta weight the risk/benefit of going to clinics...

She also said that she’s seeing a lot more research and discussion of ME, concerning with people that recovered from covid but are still having fatigue.
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I have seen a lot of discussion about this as well. A couple pages I follow on FB are always posting things regarding the connection between covid and ME, which I think is good, it needs more attention. I have even got breaking news alerts about it, so hopefully it will quit being swept under the rug.
 
morgan_25

morgan_25

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Messages
133
EddieB said:
I do also have pain like that at times, usually on one side or other of the throat, hurts to swallow.
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It’s such an interesting type of “pain” sometimes it seems odd to call it pain, because it more so feels like I have a rubber band constricting my airways, at least that’s how it is for me. That’s the best way I can explain it. So far that, and the difficulty swallowing are the major things I have noticed. I do feel like the swallowing issue may have something to do with my sinuses possibly? It seems like if I had a lot of sinus pressure it makes it harder to swallow and my throat just resists it you know.
 
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