EBV follow up 1…..

I intended to follow up my previous post about Epstein Barr virus (EBV) earlier, but I tend to postpone posting until I have something constructive to offer. I can’t imagine you’re here to hear me complain (god bless you if you are) – although inevitably and as a forewarning, there will be some of that – and if I don’t have something helpful to say, I err on the side of not saying anything at all. I’m here to learn from all of you, and I hope that feeling is mutual.

I have learned a lot about EBV recently. We could shoot the shit about how EBV affects cell apoptosis or about immune system evasion by gammaherpesviruses for hours over margaritas. But I have yet to figure out it’s impact on my current situation. If you have read previous posts here and here, you know I have been experiencing mono-like symptoms for almost 4 months. Monospot test came back negative, but an EBV panel showed a case of reactivated Epstein Barr.

Nearly 95% of the population carries antibodies for EBV. Most people contract EBV at some point in their life. For some it shows up in the form of mononucleosis, and some never have an active infection but still produce antibodies. Our bodies are amazingly resilient, when you consider the astronomical amount of bacteria and viruses we encounter regularly. If our immune systems are doing their job, they eliminate those threats. But some viruses, like EBV, avoid detection by hiding in plain sight in memory B cells, where T cells won’t find it. It’s like when Elmer Fudd is chasing Bugs Bunny and Bugs Bunny puts on a fake mustache and suddenly Elmer Fudd is like “where the fuck did Bugs Bunny go?” Those little EBV viruses put on the fake mustache and – boom – your T cells can’t find them.

Or, it’s like when my dog wants to play hide and seek:

EBV just kind of chills with the B cells. But for some of us, something causes it to rise up and form a mutiny, running out with guns blazing.

Symptoms

After my EBV blood panel showed a reactivation, I read more about EBV symptoms. Symptoms of an EBV reactivation are very similar to infectious mono and include;

• fatigue, sometimes severe
• sore throat
• swollen lymph nodes
• headache
• ear pain
• body aches
• enlarged spleen

Fever is common in mono but not standard in EBV reactivation. I was experiencing all of the above, except that I don’t know how to check my spleen. I did have some pretty moderate loss of appetite early on which is suggestive of enlarged spleen, but that has improved.

Treatment

Because there is no cure for EBV, treatment is primarily focused on forcing the virus to retreat, and that can take may forms. Below are some of the common treatments for EBV reactivation.

• Prescription antiviral. From my research, most traditional western doctors use antivirals like acyclovir or valacyclovir.
• Herbal antiviral. Functional or integrative doctors use herbal antivirals like olive leaf, cat’s claw, lemon balm
• Monolaurin. Monolaurin is made from lauric acid, which is found in coconut oil and breast milk. It comes in pill form or in little tiny pellets. Studies have shown that monolaurin has antibacterial, antifungal, and antiviral properties, but it is not approved by the FDA to treat any condition.

  

• Vitamin C. Extremely high doses of intravenous vitamin C have been reported to treat EBV reactivation. However, oral vitamin C will not suffice – it must be given by IV.
• L-Lysine. L-lysine is an essential amino acid that aids in viral suppression. A recent study showed that L-lysine can prevent COVID-19 in the entry stage, but l-lysine also has not been approved by the FDA for the treatment of any condition.
• Other immune- boosting solutions. Infrared sauna, vitamin D, and detoxification are also used to treat EBV.
• Liver support. There is a lot of conflicting information about this. Some EBV doctors suggest that the liver needs to be cleansed of all the viral cells that die off as the EBV is treated. Studies have shown that activated charcoal (which helps support the liver) makes antiviral medication more effective. Regardless, a healthy liver can help the body detoxify.

I initially started taking monolaurin on July 1st. I started very slow, initially just taking 1 pellet and increasing by by 1-2 pellets each day. I now take 1 tsp, which is 3000mg (probably about 85 pellets). I had taken 500-1000mg l-lysine daily for about a year because it helps with iron absorption, but increased that to 2000-2500mg daily to address EBV. I also tried olive leaf, but believe that may have caused an increase in allergies.

At an appointment with my POTS cardiologist in late July, I mentioned the mono-like symptoms. He agreed that it wasn’t likely caused by POTS, and while he wasn’t sure it was EBV, he agreed it could be some kind of virus. He offered to prescribe an antiviral, so I have also been on valacyclovir (Valtrex) since then. My fatigue was starting to improve prior to that appointment, and has significantly improved since. I’m still more tired than normal, but I no longer feel the need to spend all day in bed. However, my ear pain, body aches, and sore throat have not improved at all, and the lymph nodes in my neck and under my jaw are still noticeably swollen and might be getting bigger. There’s one in my armpit that occasionally pops its head out to check how many more weeks of winter, too.

My POTS cardiologist retired about a week after our appointment. He has helped treat my POTS for 11 years, so his retirement is devastating. Not only am I on the hunt for a new doctor that is willing to treat POTS (there’s enough drama there to be the subject of its own post), but now I’m on my own for EBV, too. I don’t know whether I should be increasing the Valtrex dosage to suppress the rest of the symptoms, or whether I will have to take the Valtrex forever, or if it has done all it will and I should stop. I don’t know if swollen lymph nodes for 4 months is concerning or insignificant, or whether they’ll go away on their own or the Valtrex will eventually kick them out.

Causes

EBV reactivation can have many causes, and I suspect many cases are idiopathic. Causes include:

• physical stress (such as surgery)
• emotional stress
• infections
• hormonal imbalance
• nutritional deficiency
• mold or other toxins

I’m still investigating my cause. Initially I thought it might be stress or hormonal imbalance, since I may be in the beginning stages of menopause, but I’m rethinking that. I have been dealing with moderate stress, as we just hit the one-year mark for husband’s unemployment, and I am on estrogen and progesterone to address night sweats, but I still wonder if there isn’t something else, especially since, if anything, my lymph nodes have gotten even larger.

Complications

Generally, most people either experience EBV as mononucleosis or EBV just lies dormant in their body without ever experiencing symptoms. Very few people experience reactivation, and even fewer have more serious complications. However, recent studies have shown that EBV may trigger:

• multiple sclerosis
• rheumatoid arthritis
• lupus
• Hodgkins and non-Hodgkins lymphoma
• nasopharyngeal carcinoma
• Burkitt’s lymphoma

To be clear, all of those are rare and could involve several factors beyond EBV, like genetics, environment, and comorbidities. EBV reactivation can also lead to chronic active EBV (CAEBV) which is a rare but very serious form of EBV. CAEBV can result in death and can only be treated by stem cell transplant.

Fortunately, I don’t have any signs of complications.

Next Steps

To be honest, I don’t know where to go next. I recently visited the dentist to inquire whether any of my symptoms could be caused by a dental issue, but xrays showed everything is fine. The dentist prescribed antibiotics, and I’m considering giving them a try to see if the swollen lymph nodes and ear pain are caused by an underlying-but-not-obvious bacterial infection going on somewhere in my body. I may retest my EBV antibodies again in a few weeks to see if my counts have improved at all, but I’m also starting to rethink how much weight I should put into the numbers, and will probably just focus on the symptoms.

There’s more wisdom in your body than in your deepest philosophies. – Nietzsche

Smell ya later.
– Linds