• Phoenix Rising needs funds to operate: please consider donating to support PR

EBV Reactivation /Zantac / Tagament to boost Immunity - help

Sidereal

Senior Member
Messages
4,854
Likes
17,252
Just added and started that one two days ago
When did the weird nerve symptoms start? When did you start the other supplements like liposomal glutathione and turmeric?

I ask because red marine algae, brown marine algae, turmeric and many other supplements give me severe HSV and VZV reactivations. What is "good for the immune system" in normal people is often strongly contraindicated in ME/CFS.
 

SunMoonsStars

Senior Member
Messages
156
Likes
63
Oh the symptoms have started over the last few months.
The supplements have been things I have used on and off through the years in acute times and have helped me but this episode is a strange one.
I am not thinking for me there is a relation but I see what your saying. The timing and my experience with these has been enough to feel that I do not respond in a bad way or negative way.
All accept the algae. I have not ever tried it and just added it. I do not take high doses of anything really but I have upped the LLysine but that I have done at various times when I have any viral issue.

What are you thinking ?

Maybe I should just take nothing extra.

The Tagamet is amazing though and It makes me wonder exactly what is going on.
 

Sidereal

Senior Member
Messages
4,854
Likes
17,252
All I can say is that the algae cause me severe problems with herpes reactivations. If the cimetidine is amazing, why mess around with the other stuff?
 

SunMoonsStars

Senior Member
Messages
156
Likes
63
Oh Wow. Thats crazy
Well the only reason I was adding things was i still could fell these surges every few days even if they felt muted. As well the progression of numbness in spine and now blurry vision and nerve spasm type movements in the face.

From what I understand the Tagamet is helping with the immune system by affecting the suppresser cells. I felt I would benefit by adding things that help stop replication of viruses in other ways if my body is not getting this under control on its own. Maybe I am not giving it enough time. I did not start the H2 blockers under two months into this thing and its only been two weeks.

The tagemet almost makes me feel as if its muting what is going on. Like the virus is still under there doing its thing but I just can not feel the severity of the symptoms.
Its an odd feeling. ......

What ever it is I have is quite powerful. I never had felt anything like it.

For example.. If I miss a dose or lower the tagemet I can feel the symptoms emerging again that were so relieved. It works so fast when I take it and those symptoms come back so fast tat the lowering or missing doses..
And this is dramatic changes such as the nerve pain goes from a level 8 or 9 severity to a 0 or 1. And the nausea and headaches are subdued to same dramatic levels. When surge hits which is like every two or three days I up the dose and that gets me through that. But it just keeps going on like this. So is it really helping it or what is happening I have no idea.
 
Last edited:

SunMoonsStars

Senior Member
Messages
156
Likes
63
I started having these weird symptoms after a long winter of Pneumonia that I had to do three rounds of Antibiotics to resolve and It really weakened me. It was only a month after I finally was feeling so much better that these sensations and outbreaks and all the other symptoms hit and then have stayed strong now for over two months this way.
 

SunMoonsStars

Senior Member
Messages
156
Likes
63
All I can say is that the algae cause me severe problems with herpes reactivations. If the cimetidine is amazing, why mess around with the other stuff?
Would you expand on why you think this is your experience ? I appreciate your responses and information.
Thanks much
 

Sidereal

Senior Member
Messages
4,854
Likes
17,252
Would you expand on why you think this is your experience ? I appreciate your responses and information.
Thanks much
Not sure I understand your question. Are you asking why I think that algae cause herpes reactivations? It took a few days the first time I took algae for this immune reaction to build up. Now the system is sensitised so if I take them I get herpes symptoms within minutes: an outbreak in the eyes (tingling, pain, itching, blurry vision, bumps on the skin around the eyes), nerve pain elsewhere, cold sores etc. It doesn't go away no matter how long I stay on them, it only gets worse. It is incredibly annoying because algae are an otherwise very effective treatment for all my ME/CFS symptoms. I take a tiny dose every few days (a tiny fraction of a capsule) which doesn't cause herpes virus issues but it's nowhere near as effective for energy etc.

If these symptoms emerged after a long course of antibiotics you might want to look at the gut microbiome stuff and how to modify it. We have a couple of useful threads here, one is on Clostridium butyricum, the other on resistant starch.
 
Messages
59
Likes
33
Location
Pittsburgh, PA
I posted a few months ago about taking Tagamet and I still take it, I think it is helping me quite a bit. I take it along with Famvir. I keep thinking I might back off it a bit to see if it is really helping or if I don't need it anymore, but I don't want to have a really bad day.
 

adreno

PR activist
Messages
4,841
Likes
10,902
It is incredibly annoying because algae are an otherwise very effective treatment for all my ME/CFS symptoms
That's too bad. Have you tried combining the algae with something that might help control the herpes? I find that astragalus helps, but there are other options I could think of, such as olive leaf or monolaurin.
 

Sidereal

Senior Member
Messages
4,854
Likes
17,252
That's too bad. Have you tried combining the algae with something that might help control the herpes? I find that astragalus helps, but there are other options I could think of, such as olive leaf or monolaurin.
I tried astragalus, didn't notice anything really. The thing is, I can't keep taking Valtrex and cimetidine every day. I tolerate drugs very poorly.
 

SunMoonsStars

Senior Member
Messages
156
Likes
63
I agree the Tagamet is best for acute periods and not forever long term most likely. But for now it is helping so much I will stick with it.
Thank you Sidereal about the comments about Algae and to be honest I feel you right to not mess around adding too many new things right now. What is ironic the second you typed facial twitching and around the eyes it was that same day I started the algae it was starting up to happen to me and maybe you sent me that message exactly on time. I am not sure but I am not going to mess around with it. THANKS AGAIN!!!!
 

Sidereal

Senior Member
Messages
4,854
Likes
17,252
I agree the Tagamet is best for acute periods and not forever long term most likely. But for now it is helping so much I will stick with it.
Thank you Sidereal about the comments about Algae and to be honest I feel you right to not mess around adding too many new things right now. What is ironic the second you typed facial twitching and around the eyes it was that same day I started the algae it was starting up to happen to me and maybe you sent me that message exactly on time. I am not sure but I am not going to mess around with it. THANKS AGAIN!!!!
No problem. So, are you feeling any better now?
 

SunMoonsStars

Senior Member
Messages
156
Likes
63
I am actually. Every day I am noticing a less severity of the symptoms a bit and even though every few days a bit of a surge its a 10 steps forward and 2 backward thing.
The Tagamet has been life saver really in just getting through this and dealing with the severe pain of this episode which is attacking my nerves quite strongly.
My immunity really is struggling I can feel it. It takes a lot longer for me to get over anything even if its a common ailment or even would healing or anything at all.
EBV can take months for a normal person to get through and over even if reactivation.

I was wondering. Did you go through any detailed immunity testing and work and was it helpful? I know the immune system is complex and though I have battled things from birth that have been infection upon infection and I work hard to keep strong as possible but as soon as I see a clearing seems a new infection takes a turn or an old one shows back up. Its pretty frustrating!!
 

Sidereal

Senior Member
Messages
4,854
Likes
17,252
I am actually. Every day I am noticing a less severity of the symptoms a bit and even though every few days a bit of a surge its a 10 steps forward and 2 backward thing.
The Tagamet has been life saver really in just getting through this and dealing with the severe pain of this episode which is attacking my nerves quite strongly.
My immunity really is struggling I can feel it. It takes a lot longer for me to get over anything even if its a common ailment or even would healing or anything at all.
EBV can take months for a normal person to get through and over even if reactivation.

I was wondering. Did you go through any detailed immunity testing and work and was it helpful? I know the immune system is complex and though I have battled things from birth that have been infection upon infection and I work hard to keep strong as possible but as soon as I see a clearing seems a new infection takes a turn or an old one shows back up. Its pretty frustrating!!
I've had some immune testing, mostly for rheumatological diseases. It's not terribly helpful for ME/CFS.

Why do you think EBV is causing your nerve pain and other symptoms? I'm no doctor but your symptoms sound nothing like EBV to me. From what you've described here it sounds more like reactivation of varicella zoster (the virus that causes shingles) and herpes simplex. They're the ones that live in the nerves.
 

SunMoonsStars

Senior Member
Messages
156
Likes
63
What is really interesting. While having an acute viral attack.. Maybe other chronic symptoms are so much better!
I am sleeping!
I have so much less "fatigue" that is the type that you feel like a truck hit you and your sluggish and heavy but not sleepy. That horrible feeling fatigue.
Its so much better!!

I talked to one of my doctors who said it happens where a new infection resets the immune system.
He said sometime even in the hospitals after a surgery or procedure they actually induce or give some sort of treatment to induce a response to an infection to get the immunity responding and stimulated into gear.

Interesting and How I feel is that way for sure and In a way I like this virus as i have a break from the other chronic symptoms. But what to do about that I am not sure.
 

Sidereal

Senior Member
Messages
4,854
Likes
17,252
You will meet other people here who feel better during an infection (not everyone; some feel worse during infections).
 

SunMoonsStars

Senior Member
Messages
156
Likes
63
do you think EBV is causing your nerve pain and other symptoms? I'm no doctor but your symptoms sound nothing like EBV to me. From what you've described here it sounds more like reactivation of varicella zoster (the virus that causes shingles) and herpes simplex. They're the ones that live in the nerves.
I have a positive test for Reactivated EBV. Also I saw a dermatologist who looked at the outbreaks and said they are not herpes or shingles at all. And I agreed as I have a herpes that I know exactly what it feels and looks like. She said she sees this in immune compromised patients with EBV and it matched my test result from another doctor.

I am waiting on new tests from a third doc who also agrees its not Herpes or Shingles too. And has seen and been monitoring me even near weekly lately as we had thought it was bacterial like strep or staph at first because I had a sinus infection with postuals under the nose that were draining pus and crusting over that then later I got more and some other what you call cut out drainage lesions on my hip/butt on both sides. I had also recently went to a surgery center with family member (my mistake) and thought I may have picked up something. You see I had no pain during the outbreaks. But just feeling of movement deep down in my nerves like rumbling and I had a break out on one arm even that ended up being so painful and felt like at a nerve ending.

When you read in depth there are "in some cases" People show with my symptoms. I have read about the exact break out types and even one the arms at times. Odd I know. I also have seen some posts of people with EBV reactivation with dual side severe nerve pains in the "butt" that are really painful and come with it. I know its not typical believe me. But been really getting evaluated by many people. There was a positive scant for two bacterials as we were trying to rule out bacterial but its believed that was secondary to the viral attack. I do not have enough break out anymore for the dermatolgist to do a tissue test. That is what she wanted to do but they are not huge break outs. its like a hole comes through and opens up and drains from a nerve ending. And also postuals on the top of skin that are like bumps. Then they open and drain and crust. But I am not having anymore of those either. Both of which are listed as types some people get with EBV as I have read.

The new tests are PCR for EBV and CMV and HHV6 and we will see if I show anything on those.

Hope that explains why I am in that direction.
 
Last edited: