Lyme Disease Journal Entry Five **Scoreboard Lyme-One Me-Still Standing**

This week I want to give a brief overview on Gluten Free Diet and Epstein Barr Virus. Both where the top searches in last weeks post. I hope the information is helpful. The CDC is a great place to get up to date information. Have a great weekend. 🙂   M

Gluten Free What does it mean?

My doctor follows The Mayo Clinic, Gluten-free diet: What’s allowed, what’s not. All information taken from The Mayo Clinic outline.

A gluten-free diet is a diet that excludes the protein gluten. Gluten is found in grains such as wheat, barley, rye and triticale (a cross between wheat and rye). Gluten causes inflammation in the small intestines. Switching to a gluten-free diet is a big change at first, it takes some getting used to. Many specialty grocery stores sell gluten-free foods. We shop at Whole Foods and have found a large selection of gluten-free products, including brownies. Here are some surprises I discovered. My husband eats many gluten-free products but not exclusively. The Mayo Clinic strongly warns to watch for cross contamination. An example is if one is eating gluten-free bread and the other is not, the toaster could cause cross contamination. Another contamination point is using the same utensils to cook gluten-free and non gluten-free. Yes, it is that detailed. Be careful with grains such as oats which can get contaminated with wheat during the growing and processing. I treated myself to ham lunch meat and cheese last week. Wrong, no processed meats. You have to look for vitamins and medicine that use gluten as a binding agent. Remembering all this information is why I have started eating only items marked gluten-free. I don’t want to work that hard. A gluten-free diet helps people with Lyme Disease to reduce inflammation in the body.

Epstein Barr Virus 

The information is from The Center for Disease Control. Epstein-Barr virus (EBV), also known as human herpesvirus 4, is a member of the herpes virus family. It is one of the most common human viruses. EBV is found all over the world. Most people get infected with EBV at some point in their lives. EBV spreads most commonly through bodily fluids, primarily saliva. EBV can cause infectious mononucleosis, also called mono, and other illnesses. After you get an EBV infection, the virus becomes latent (inactive) in your body. In some cases, the virus may reactivate. This does not always cause symptoms, but people with compromised immune systems are more likely to develop symptoms if EBV reactivates.

EBV is spread by saliva through: Using the same eating utensils, toothbrushes, sharing drinks and food, kissing and having contact with toys children have drooled on

The first time you get infected with EBV (primary EBV infection) you can spread the virus for weeks and even before you have symptoms. Once the virus is in your body, it stays there in a latent (inactive) state. If the virus reactivates, you can potentially spread EBV to others no matter how much time has passed since the initial infection.

General challenges:

The neuropathy in legs and hands is like getting stabbed with big needles. My hands and legs go to sleep very quickly while sitting down.

The fatigue has taken its toll the past four days. I have spent more time sleeping than awake. Today is the first time I’ve felt good in a week.

I have revolted against the supplements this week. With my sleep schedule it wasn’t worth trying to keep up..

The blinding headaches are a daily occurrence, the pain meds help, not crazy about taking pain pills. I will get well and don’t want a drug habit to break. After starting antibiotic treatment in a couple of weeks, may change my mind.

The edema causes my ankle bone to disappear and legs tight up to shin. Anything I bump into  leaves a huge bruise.

The lab work did show Chronic Lyme Disease which means I’ve had Lyme for a year or more. I have to wait until 9/17/14 to get the complete run down.

I still have several test to complete for the Cardiologist. Didn’t do well on the pulmonary part of stress test. One breathing exercise only scored 55%.


  1. You might already be familiar with this site, but there’s a doctor who gives all information away freely, and he’s rather passionate about Lyme disease. He does sell products, but you don’t have to buy anything for the free articles and videos. I’ve found it invaluable for some of my own health challenges.


  2. You may have written about this elsewhere, but has your Doc included D3 testing? Supplementing with D3 is hugely beneficial towards reducing inflammation and assisting with malaise that leans towards depression. B-12 is very helpful for brain fog (even medication induced). I’ve referred many people to the kinds I get on Amazon and they’ve experienced improvement. There are specific types to look for, not just any type. Intrinsic factor impacts B-12 absorption, and lack of B-12 results in neuropathy. Stress and gluten intolerance reduce intrinsic factor. Vicious circle, that.

    *I am not a doctor and don’t even play one on TV.



  3. Hi twin, I liked your post (but I actually HATE you are going through this). Really hate… it hurts to read you are in pain.
    As you said: “Today is better than yesterday”… you missed this bit “and worse than tomorrow” :).
    Hugs (and keep a Vomitero near, it’ll make you smile when you don’t have to use it :))


    • Hi Twin,
      I loved the last vomit story!!!! The beauty of holidays. I just logged in so I need to see if you’ve made others comments. I saw the end of one with your name. Do you saw like Paula? So you’re learning German, you already know English and Spanish. What language do you speak in Cowshitland? I’ll talk with you soon. If you haven’t given me an update on the critter you heard last night let me know. We need to talk offline so I can get your address. My e-mail is I have a goody to send you. Talk to you soon. You can look forward to the next vomit story, think I’ll go with the limo one unless I think of a better one. Hugs. 🙂


  4. I see a lot of gluten free products are readily available. Never thought about cross contamination- that’s good information. As for the dishes…my mom tried to teach me about hiding them in the dishwasher…I prefer “soaking” them in the sink …What is the prognosis? A year of not knowing …


    • My dear friend Angel,
      I have Chronic Lyme, Epstein Barr Virus, low white blood cell count, low folate and get all the details on 9/17?. I’m in the advanced stages of Lyme, which could take 1-3 years to get under control. I may never be completely clean of Lyme and have to take antibiotics for longer than I want to think about.The little buggers are in my brain, that’s why I’m having the neurological symptoms. There’s no way to no if damage is permanent or not. I have lost connection in many nerves in my lower legs. They will not correct themselves. At this stage it’s hard to kill them because the body can take only so much antibiotics at a time. The little buggers bore their way thru your body and where they hang out is where you have damage. High doses of antibiotics makes you feel like you are dying. So I’ll get worse before I get better. That is the reason I’m taking so many pills now, trying to get my body ready for antibiotic treatment. I may have a port in my arm for easier injections. It can get so crazy. You feel like you dying and doctors have to take you off meds to see how you are really doing. Then if needed put you back on meds. I’m looking at the Dragon product to see if it will allow me to post on the really shitty days. I can handle it. I survived abuse, two failed marriages, cancer, heart problems, nothing is going to keep me down. Or not down for long. I’m taking it one day at a time with a positive outlook knowing Lyme is not going to kill me. I have you. Hugs. This is the reason I’m trying so hard to educate people of how serious Lyme is.


  5. My heart aches for you…You are a fighter for sure. One day at a time love. ❤ Thank you for the updates. You are in my thoughts and prayers.


    • Hello my friend,
      Thank you for the kind words. We all have our hurdles, some more than others. I choose to believe God is preparing me for something big. I haven’t been angry at God yet that day could come when I’m really sick. Job did to but he didn’t stop having faith. Have a great day. I love your photos. 🙂 M

      Liked by 1 person

      • You are already making a huge impact with what you share about your disease and bringing to light the real world issues. Thank you for your honesty and bravery always. And I’m glad you like my photos 🙂


      • I appreciated your comments. At times I’m not sure people are interested. So many people have no idea about Lyme. I’m committed to post my weekly journal as long as I’m able. It’s a debilitating disease. I’ve had for at least a year and had no idea. Because Lyme mimics so many other illnesses its very hard to diagnose. Many people are told its in their head. Anything I can do to educate people is important. Talk to you soon. 🙂


  6. My heart goes out to you, enduring the pain and fatigue. . .It looks like you have good resources and doing all you can to comply. Yes, please let go of the little things. They won’t go anywhere (little smile).


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