Reactivating EBV ?

[Ann.without.an.e]

Has anyone ever heard of this? 

I have been battling what is textbook signs of lupus for about 10 years, but my ANA is always negative. Turns out, I have reactivating EBV which is strongly tied to lupus but I technically don't have lupus since my ANA is negative. I do have Lupus Anticoagulatant Antibodies and always have elevated ESR, C-RP, and RA antibodies. Just not the lupus specific tests. I also have Hashimoto's which could cause my RA number to be high. 

My EBV Nuclear Antibodies and VCA have been higher than can even be calculated by the lab each time it has been tested (3 times in 10 years) and I had an appt with my doctor today and she says she truly sees a pattern of reactivating EBV (Epstein Barr Virus). Having antibodies that high also has a greatly increased risk of getting MS. 

I can't see that there is any solution really. She wants to retest my ANA in two months since I happened to be on prednisone the last time it was tested so it may have been falsely negative. 

I am fine sometimes but at least twice a year I get slammed with extreme fatigue, chest pains, joint pain, rashes, etc. ETA: these "flares" last 6-8 weeks or so. 

I guess I just want an answer to all of this. A reason for the fatigue would help me not feel so guilty about it, if that makes sense. 

Edited August 7 by Ann.without.an.e

[prairiewindmomma]

Ping @gardenmom5. I think this is something she has found some measure of success in dealing with.

[KSera]

1 hour ago, Ann.without.an.e said:

Has anyone ever heard of this? 

I’m familiar with it only in the context of it being one of the things that is associated with long covid. I wonder if in the past you have had other viruses reactivating it. Sorry to hear you are dealing with these symptoms and I hope someone has some good answers for you. 

[prairiewindmomma]

please dont quote…
Fwiw, reactivating EBV is different than chronic EBV, as I understand it. I have heard of it and it was why I was tested for Lyme, H. Pylori and told to keep up with my dental hygiene since I have had EBV in the past. Those things are all known to spark reactivation in addition to viruses and bacteria sparking reactivation.
 

I’m kind of where you are, in terms of symptoms & test results on the Hashimoto’s, esr, crp, and rf. Are you on DMARDs already? And if not, why not? Are they thinking EBV alone is causing all of your other bloodwork to be the way it is? It’s in the range of possible…especially if you dont have radiologic changes to your bones or other things pointing to more specific diagnoses.

I will say I think what we are lumping into specific disease names is rarely tidy. Most of the people I have known with disease labels kind of spill over into other labels also. I dont qualify for a lupus label (yet) on bloodwork, but they still have me on two dmards including plaquenil. I didnt get my rheumatoid arthritis label formally until about five years in, but my rf test still flickers negative occasionally.

Edited August 7 by prairiewindmomma

[Ann.without.an.e]

23 minutes ago, KSera said:

I’m familiar with it only in the context of it being one of the things that is associated with long covid. I wonder if in the past you have had other viruses reactivating it. Sorry to hear you are dealing with these symptoms and I hope someone has some good answers for you. 

I have read this in my research too and would assume maybe long covid, except I tested twice for EBV, almost 10 months apart in 2015 and then just tested extremely high for it again. So this all started long before covid. 

 

9 minutes ago, prairiewindmomma said:

please dont quote…
Fwiw, reactivating EBV is different than chronic EBV, as I understand it. I have heard of it and it was why I was tested for Lyme, H. Pylori and told to keep up with my dental hygiene since I have had EBV in the past. Those things are all known to spark reactivation in addition to viruses and bacteria sparking reactivation.
 

I’m kind of where you are, in terms of symptoms & test results on the Hashimoto’s, esr, crp, and rf. Are you on DMARDs already? And if not, why not? Are they thinking EBV alone is causing all of your other bloodwork to be the way it is? It’s in the range of possible…especially if you dont have radiologic changes to your bones or other things pointing to more specific diagnoses.

I will say I think what we are lumping into specific disease names is rarely tidy. Most of the people I have known with disease labels kind of spill over into other labels also. I dont qualify for a lupus label (yet) on bloodwork, but they still have me on two dmards including plaquenil. I didnt get my rheumatoid arthritis label formally until about five years in, but my rf test still flickers negative occasionally.

 

I was tested for Lyme with one of my odd rashes during a flare too. I also have what appears to be autoimmune gastritis so was tested for H Pylori but it was negative. 

I have not been offered a DMARDs. I've been mainly dismissed lol. The Rheum I saw was extremely dismissive since my ANA was normal. They always say that Hashi's itself can cause my other markers to be high. I am having the Lupus Anticoagulant retested in 2 months. My doctor will also pull the ANA again to double check it. 

 

 

Edited August 7 by Ann.without.an.e

[KSera]

5 minutes ago, Ann.without.an.e said:

I have read this in my research too and would assume maybe long covid, except I tested twice for EBV, almost 10 months apart in 2015 and then just tested extremely high for it again. So this all started long before covid. 

Right. I’m not suggesting it’s not reactivating EBV, I’m saying that Covid appears to be one of the viruses that is reactivating it in people, and that is the context I’m familiar with it in. That’s why I said that perhaps in the past you had other viruses that were causing the reactivation. It at least means there’s been more familiarity with it as of late, since it is happening to more people, which hopefully might mean better chance of treatment.

 

[Ann.without.an.e]

9 minutes ago, KSera said:

Right. I’m not suggesting it’s not reactivating EBV, I’m saying that Covid appears to be one of the viruses that is reactivating it in people, and that is the context I’m familiar with it in. That’s why I said that perhaps in the past you had other viruses that were causing the reactivation. It at least means there’s been more familiarity with it as of late, since it is happening to more people, which hopefully might mean better chance of treatment.

 

Oh yes, that makes sense. I feel like I "flare" when my immune system is triggered so your theory makes sense. I also had one of the worst flares after I got a bad case of poison ivy. 

 

[KSera]

Is your dr who tests you for ebv antibodies a regular GP? (Asking because we’ve wondered about getting this testing done for a family member)

[Ann.without.an.e]

2 minutes ago, KSera said:

Is your dr who tests you for ebv antibodies a regular GP? (Asking because we’ve wondered about getting this testing done for a family member)

 

Yes, it was my regular GP. It is just the EBV test panel.

[Ann.without.an.e]

4 minutes ago, KSera said:

Is your dr who tests you for ebv antibodies a regular GP? (Asking because we’ve wondered about getting this testing done for a family member)

I looked it up on Labcorp and the exact name is actually EBV Antibody Profile

[prairiewindmomma]

Sounds like you have a decent GP. Sorry rheumy didnt lead anywhere. Is your GP willing to do a trial of plaquenil or another DMARD with you to see if you respond? Or can you see a different rheumatologist? You’ve got a lot of signals for healthy tissue being attacked by autoimmune something….tamping down the autoimmune seems like a logical next step.

[kbutton]

I think I would look for another rheumatologist. My mom was seronegative for RA, and they gave her DMARDS, which knocked it into remission (close to thirty years now of no signs of it coming back). She sometimes doubts she ever had it, but it does run in the family, and I remember how utterly miserable she was and how debilitated she became quickly (and is now very able).

I also know someone else who was screened for lupus and not considered to have it. Got a diagnosis 20 years later.

It is my understanding that most AI conditions have a certain percentage of sufferers with seronegative presentations.

[Ann.without.an.e]

1 hour ago, prairiewindmomma said:

Sounds like you have a decent GP. Sorry rheumy didnt lead anywhere. Is your GP willing to do a trial of plaquenil or another DMARD with you to see if you respond? Or can you see a different rheumatologist? You’ve got a lot of signals for healthy tissue being attacked by autoimmune something….tamping down the autoimmune seems like a logical next step.

 

 

7 minutes ago, kbutton said:

I think I would look for another rheumatologist. My mom was seronegative for RA, and they gave her DMARDS, which knocked it into remission (close to thirty years now of no signs of it coming back). She sometimes doubts she ever had it, but it does run in the family, and I remember how utterly miserable she was and how debilitated she became quickly (and is now very able).

I also know someone else who was screened for lupus and not considered to have it. Got a diagnosis 20 years later.

It is my understanding that most AI conditions have a certain percentage of sufferers with seronegative presentations.

 

I love my GP, she is an MD but also a ND and will prescribe meds but prefers more natural solutions. Maybe I should see a different rheum. I truly disliked her. She came in and talked to me like I was 4 and when I was explaining these flares she looked at me confused and said "what do you mean by flare? what does that even mean?" as if she didn't know what a flare was at all. She also had no idea that there were antibodies connected to Hashimoto's (how does she not know this?). She had a resident interning with her and he was behind her and there were a few times when he raised his eyebrows like "how does she not know this" haha. He wasn't trying to do this, he is just the type of person who cannot hide what he is thinking. I mentioned being GF and she was like "why? you're not celiac" and the resident immediately said "for the hashi's right?" and she said "GF makes no difference with hashi's" Again, his eyebrows raised. I wish he could have been my Rheumatologist haha. 

[gardenmom5]

I'm not home,  so limited in what I can type.  Will write a lot more later.

ebv can trigger lupus.

Start with 1000mg L- lysine.  (I take it three times a day)  L-lysine bonds with arginine.   EBV feeds off arginine.  The lysine basically starves it.

[kbutton]

14 minutes ago, Ann.without.an.e said:

 

 

 

I love my GP, she is an MD but also a ND and will prescribe meds but prefers more natural solutions. Maybe I should see a different rheum. I truly disliked her. She came in and talked to me like I was 4 and when I was explaining these flares she looked at me confused and said "what do you mean by flare? what does that even mean?" as if she didn't know what a flare was at all. She also had no idea that there were antibodies connected to Hashimoto's (how does she not know this?). She had a resident interning with her and he was behind her and there were a few times when he raised his eyebrows like "how does she not know this" haha. He wasn't trying to do this, he is just the type of person who cannot hide what he is thinking. I mentioned being GF and she was like "why? you're not celiac" and the resident immediately said "for the hashi's right?" and she said "GF makes no difference with hashi's" Again, his eyebrows raised. I wish he could have been my Rheumatologist haha. 

She sounds like a gaslighting horse’s rear end. Wow! Why bother getting not only a medical degree but extra specialty on top of it if you won’t even bother to use it? Keep that resident’s name, lol!!! 

[gardenmom5]

Chronic/reactivated EBV has been linked to MS, Lupus, Hashi's, RA, and Fibro. . . . . (treating it has been complex because I also have to deal with thyroid and adrenals due to the damage it caused them.)

Since I've been getting my EBV more under control, my Fibro symptoms have significantly improved.  I (possibly) have RA in one joint, and it's doing a lot better too.  No longer feels like it was smashed against a rock with a hammer, though the joint is still very swollen.

There are some good FB EBV groups.  (the most active is "Chronic Epstein Barr virus" - it covers all the forms.  what tests, what works, etc.)

Things that have been working for me.
Monolaurin, (natural immune support that is made from lauric acid found in breast milk.)-it's also found in coconut milk which is probably why I feel a noticeable difference drinking coconut water vs electrolyte drinks.
Priority One Biofilm phase 2 advanced.  Viri encase themselves in a biofilm to protect themselves from your immune system.  Anything that will attack those biofilms will be helpful as it can better allow your immune system to attack the virus.
vitamin C (we're talking large doses)

Valacyclovir - antiviral.  my ND prescribed 2,000mgs a day, (When I was first on it a few years ago, I felt like I had chronic fatigue the entire six months I was on it so I stopped taking it.   At that time I wasn't on the above immune supports.)  I don't' think it was a high enough dose.

I was prescribed 3,000mgs for the shingles. (I was so mad, I was starting to feel better in the very few weeks right before I developed it.  SCREAM!!!!  It's not fair .. . cry. . .  )  I think combined with the above immune supports it's working a lot better.  I've been on it since mid June and I'm feeling better than I have in too long.  (once the nerves heal . . . . )

I'm feeling well enough I'm starting to decrease some other immune supports but keeping those above.  (and paying attention that I really can stop the others.  I think it will be fine.)

And diet - GF should also help with the EBV.  The ND that originally diagnosed me (she disappeared during covid . . . ) also wanted me to avoid milk products (probably the casein.).  I avoid soy too.
 

1 hour ago, Ann.without.an.e said:

 

I love my GP, she is an MD but also a ND and will prescribe meds but prefers more natural solutions. Maybe I should see a different rheum. I truly disliked her. She came in and talked to me like I was 4 and when I was explaining these flares she looked at me confused and said "what do you mean by flare? what does that even mean?" as if she didn't know what a flare was at all. She also had no idea that there were antibodies connected to Hashimoto's (how does she not know this?). She had a resident interning with her and he was behind her and there were a few times when he raised his eyebrows like "how does she not know this" haha. He wasn't trying to do this, he is just the type of person who cannot hide what he is thinking. I mentioned being GF and she was like "why? you're not celiac" and the resident immediately said "for the hashi's right?" and she said "GF makes no difference with hashi's" Again, his eyebrows raised. I wish he could have been my Rheumatologist haha. 

blink blink blink . . . .  I've had MDs/DOs like that - but NEVER a ND. . . . (I'm near Bastyr, so there are a lot of NDs here.)

I'd find a another dr.  like yesterday.  (and I loathe and despise dr shopping.)
 

Edited August 7 by gardenmom5

[Ann.without.an.e]

22 hours ago, gardenmom5 said:

I'm not home,  so limited in what I can type.  Will write a lot more later.

ebv can trigger lupus.

Start with 1000mg L- lysine.  (I take it three times a day)  L-lysine bonds with arginine.   EBV feeds off arginine.  The lysine basically starves it.

 

Thank you. Do you take 1,000 mg a day or 1,000 mg 3 x a day?

[Ann.without.an.e]

21 hours ago, gardenmom5 said:

Chronic/reactivated EBV has been linked to MS, Lupus, Hashi's, RA, and Fibro. . . . . (treating it has been complex because I also have to deal with thyroid and adrenals due to the damage it caused them.)

Since I've been getting my EBV more under control, my Fibro symptoms have significantly improved.  I (possibly) have RA in one joint, and it's doing a lot better too.  No longer feels like it was smashed against a rock with a hammer, though the joint is still very swollen.

There are some good FB EBV groups.  (the most active is "Chronic Epstein Barr virus" - it covers all the forms.  what tests, what works, etc.)

Things that have been working for me.
Monolaurin, (natural immune support that is made from lauric acid found in breast milk.)-it's also found in coconut milk which is probably why I feel a noticeable difference drinking coconut water vs electrolyte drinks.
Priority One Biofilm phase 2 advanced.  Viri encase themselves in a biofilm to protect themselves from your immune system.  Anything that will attack those biofilms will be helpful as it can better allow your immune system to attack the virus.
vitamin C (we're talking large doses)

Valacyclovir - antiviral.  my ND prescribed 2,000mgs a day, (When I was first on it a few years ago, I felt like I had chronic fatigue the entire six months I was on it so I stopped taking it.   At that time I wasn't on the above immune supports.)  I don't' think it was a high enough dose.

I was prescribed 3,000mgs for the shingles. (I was so mad, I was starting to feel better in the very few weeks right before I developed it.  SCREAM!!!!  It's not fair .. . cry. . .  )  I think combined with the above immune supports it's working a lot better.  I've been on it since mid June and I'm feeling better than I have in too long.  (once the nerves heal . . . . )

I'm feeling well enough I'm starting to decrease some other immune supports but keeping those above.  (and paying attention that I really can stop the others.  I think it will be fine.)

And diet - GF should also help with the EBV.  The ND that originally diagnosed me (she disappeared during covid . . . ) also wanted me to avoid milk products (probably the casein.).  I avoid soy too.
 

blink blink blink . . . .  I've had MDs/DOs like that - but NEVER a ND. . . . (I'm near Bastyr, so there are a lot of NDs here.)

I'd find a another dr.  like yesterday.  (and I loathe and despise dr shopping.)
 

 

Oh, to be clear, it was the rheum who was crazy, not my ND. She handles my Hashi's and she knows about antibodies. 

 

Thank you for taking the time to write out all of these supplements. I will look into them. I have been 100% DF and GF for a long time so that isn't a problem for me. DD and twins are allergic to soy so I rarely eat that. 

How much Vitamin C do you take a day?

 

[gardenmom5]

2 minutes ago, Ann.without.an.e said:

 

How much Vitamin C do you take a day?

 

I take 1000mg VitC 3x a day.
the monolaurin is 2 capsules 3X a day

phase 2 advanced, 2 capsules at bedtime

I started drinking coconut water for my adrenals, but I think it helps the EBV too.  (might explain why I have a noticeable difference between electrolyte drinks and coconut water.)

~~~

Other immune supports (which I'm reducing after having such good results with L-lysine)

reshii mushroom

olive leaf

zinc

allicin

[gardenmom5]

10 minutes ago, Ann.without.an.e said:

 

Thank you. Do you take 1,000 mg a day or 1,000 mg 3 x a day?

I'm doing 3x a day

 

I'd originally started with taking sups 4xs a day and it just got too . . complicated . . . 

[gardenmom5]

7 minutes ago, Ann.without.an.e said:

 

Oh, to be clear, it was the rheum who was crazy, 

 

On a thyroid board I'm on, there is a deep and abiding loathing of endocrinologists . . . they are generally considered unhelpful and make things worse because they really don't know what they're talking about.

I've an acquaintance whose Rheum wouldn't even tell her all of the options for treatment until she'd said she was done having children.

[kbutton]

Just a heads-up, vitamin c causes kidney stones in some people. Make sure you drink plenty of water.