ADULT STILL’S DISEASE

Chronic EBV starts with contracting the virus and then battling the initial infection which is diagnosed by medical professionals as mono. After the body fights off the initial infection, the virus becomes dormant and some people never have to deal with it again. Chronic EBV usually shows up around 6 months after the initial bout of mono, but it can take years to reactivate. If the virus does reactivate, you may start experience symptoms like the ones listed above. The virus usually ebbs and flows depending on a variety of different factors, such as diet, activity level, stress, etc. A person will also experience “flares” where symptoms become worse than normal. Flares can be the result of anything from sitting too long at work, eating certain foods (i.e. processed sugar and gluten), or bouts of added stress.

ABOUT DISEASE

While EBV is not technically an autoimmune disease, many autoimmune diseases, such as Hashimoto’s, Graves and other Thyroid diseases, are fueled by EBV. Symptoms can even mimic those of other diseases, so it can be extremely difficult for doctors to diagnose. Many times, patients with EBV are misdiagnosed with fibromyalgia, lupus, vertigo, and tinnitus.

Glomerulonephritis due to anti-GBM antibody disease is very rare. It occurs in less than 1 in a million people. It most commonly affects young, white men (aged 15-35). After young men, it occurs next most commonly in older adults (late 50s and beyond, women more than men). It is very rare in children.

Once the diagnosis is confirmed, treatment includes a few different parts. Anti-GBM disease can be life threatening due to bleeding in the lungs, and kidney failure can occur quickly, so starting treatment as soon as possible is important.

1. If the lungs are involved, providing oxygen as needed to keep oxygen levels up. Sometimes, a breathing tube may be needed temporarily.
2. If the kidneys have a lot of damage, they may not be able to function well enough to do what they need to, and dialysis may be needed to help do the kidneys’ job. This includes getting rid of fluid from the body, balancing electrolytes and acid-base levels in the blood, and removing toxins/wastes from the body.
3. Plasmapheresis. This is a procedure that removes the anti-GBM antibody from the bloodstream. It can also be called plasma exchange or PLEX. A person’s blood is run through a machine that removes antibodies from the blood, then the blood is returned to the body (without the antibodies). Treatments last a couple hours and are usually done every 1-2 days for about 2 weeks.
4. Immunosuppressive treatment(medicines to suppress the immune system) are given to decrease/prevent the immune system

SYMPTOMS

YOUR POINT OF CONTACT

TAYLOR

ABOUT  | Taylor lives in Indiana with her husband, Jon, and their sweet rescue pup, Myles. Battling EBV for over 4 years has made healthy eating and exercise a part of her everyday lifestyle. In her free time, Taylor enjoys traveling, snuggling her dog, making and eating aesthetically pleasing food, decorating (and redecorating) her home, and spending time with her big catholic family.

AUTOIMMUNE DISEASES | Chronic EBV

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METHODS OF HEALING

There are many different protocols that natural/functional doctors prescribe. Some have worked for me and some have not. Everybody is different and every case of EBV is different, so it is imperative to find a doctor/medical professional that listens to you and works to find the right protocol for YOUR body and lifestyle.

As far as things that you can implement into your day to day maintenance of EBV…I am a huge advocate for chiropractic care if you suffer from EBV. My husband is a chiropractor and regular adjustments not only boost the immune system in general, but also help my lymphatic system drain properly, decrease brain fog, and help my overall pain. I have found that eating a well-balanced diet of whole foods while staying away from processed sugar, gluten and dairy is key. Listen to your body, it will tell you what it needs in terms of nourishment. Consistent light exercise or movement of some kind, as well as managing my stress in a healthy way and keeping a positive outlook on this whole “life with chronic illness” has been a game changer for me.

AUTOIMMUNE RESOURCES

Here are some great websites, authors, podcasts and other resources to help you navigate your Autoimmune Disease.

Adult Still’s Disease – NORD

Adult Still’s Disease – Arthritis Foundation

AUTOIMMUNE STORIES

These are the women that have shared their autoimmune journey with us. Please take a moment to read some of their brave, honest and revealing stories about their diagnosis, successes, hardships and their lives.