When Lyme Disease Triggers Multiple Food and Chemical Sensitivities

In the Summer of 2013, my daughter was diagnosed with Lyme Disease, Ehrlichia Chaffeensis and Bartonella, it all began the year before, after a family trip to Hawaii (her story here).  Her case of Bartonella was one of the worst her doctors had ever seen (see Bartonella rash here), and the diagnosis of her tick borne diseases was complicated by the fact that she had come down with a case of Parvo B-19 Virus at the beginning of her illness. All of these infections worked in concert to crash her immune system leading to multi systemic illness and a low white count, which she continues to struggle with today.

I won't lie, the treatment for these infections was an extremely tedious and difficult process, requiring combination antimicrobials (up to three at a time) for almost 2 years--very similar to treatment for TB.  Last summer, she was finally feeling like she had her life back, swimming, throwing her Water Polo ball, and able to go to the movies with friends for the first time in three years. She reported feeling like 75% of her old self. Everything was going really well until Winter when she caught a virus that just never seemed to go away. 

Everything Was Going Fine Until...

After a month, we thought it was a relapse of her Lyme & Co-infections. All her symptoms were back with a vengeance--headache, joint and muscle pain, insomnia, bone crushing fatigue, muscle twitching, gastrointestinal pain, brain fog, vivid nightmares, anxiety--it was like Bartonella all over again. We tried putting her back on an antibiotic to see if she responded but she had an allergic reaction. We waited several weeks then tried another antimicrobial but she had another reaction. All the while her body continued to decline. 

During this same time she developed allergies to many of her vitamins, supplements and personal products (makeup, soap, shampoo, lotion) and food sensitivities that had never existed before seemed to appear overnight. We immediately began an elimination diet and slowly started substituting all her products with natural or hypoallergenic alternatives.  See below for sample Elimination Diet:

click to enlarge

What is Mast Cell Activation Disorder?

At this point her doctor started to suspect Mast Cell Activation Syndrome (MCAS) or Mast Cell Activation Disorder (MCAD) and Histamine intolerance were greatly affecting her health (See my post on Mast Cells here). A friend of mine who is an infections disease doctor crowd sourced my daughters symptoms and lab tests amongst several of her colleagues, and most agreed we were dealing with some type of autoimmune/inflammatory reaction or MCAS/MCAD.

Her doctor started her on an H1 antihistamine, an H2 proton pump inhibitor, a mast cell stabilizer (custom compounded Ketotifen) and things got a little better, however her stomach got worse and she began to loose weight. We then started her on several nutritional supplements including digestive enzymes, prebiotics and probiotics. Unfortunately, she had another allergic reaction, and then another one a month later, with each reaction becoming more severe. 

Back to the Drawing Board

Nothing made any sense, so out of desperation I took her back to the Naturopathic doctor (ND) who had first discovered her Ehrlichia Chaffeensis infection when all other doctors (including a large teaching institution) had diagnosed her with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and stopped looking for the source of her illness (see the Long Road to a Lyme Diagnosis here). This ND doctor has a reputation of thinking outside the box until she finds the root cause of a person's illness, but didn't have a lot of experience treating tick borne diseases so we choose not stay with her for Lyme treatment. 

During our visit the ND went over a summary I'd made of the 3 years of testing results and symptoms since we had seen her last. She immediately recommended I call the pharmacy and find out what fillers they were using in the Ketotifen and suggested we run my daughters 23andMe results through a site called NutraHacker. I called the pharmacy, and you are not going to believe this, but they were using lactose as the filler in her Ketotifen. LACTOSE! I couldn't believe it. 

EUREKA!

My daughter had been lactose intolerant for years. Not only that, but her NutraHacker results came back showing that genetically she was intolerant to 3 of the 4 supplements I had her on including Quercetin (another mast cell stabilizer). I thought, 'EUREKA' this is it! This eccentric, tenacious Naturopathic doctor had figured out my daughters problem. Again! 

I took the new found information back to my daughters Lyme doctor and he was not happy. He could not understand why any pharmacy, let alone a custom pharmacy, would use Lactose as a filler. He called in her prescription for Ketotifen to a different custom pharmacy and specifically requested they use ascorbic acid (Vitamin C) as the filler. One week later we picked up the prescription, but decided to wait until after Thanksgiving to start it.  Her main complaints at this point were constant headache, insomnia, GI discomfort, hair loss and continued weight loss. 

Hold on to your seatbelt folks because this is where it gets really crazy...

I decided to give her a half-dose of the Ketotifen, because of her history, and within 15 minutes she started having symptoms of an allergic reaction (palpitations, chest pain, tongue numbness, lips tingling, burning on roof of mouth and throat tightness).  We both were like "NOOOOOO! Not again!" Immediately, I ran for my Emergency Kit which contains liquid Benadryl, an EpiPen, a blood pressure machine, pulse oximeter (measures heart rate and oxygen level) and thermometer. I had her drink a double dose of liquid Benadryl and we waited. (Liquid Benadryl gets into the blood stream very quickly.) 

Within minutes of taking the Benedrly her symptoms began to lesson, so we were able to avoid going to the Hospital. We were both thankful for this, as she's been to the ER five times this year already, twice for chest pain with abnormal EKG's and three times for full blown allergic reactions. It took about 6-8 hours for the majority of her symptoms to subside--we knew we were lucky I'd only given her a half dose, narrowly avoiding a full anaphylactic reaction. This time. 

Someone Screwed Up Again!

In the morning, I called the pharmacy and asked what was in the prescription. The pharmacist said, "There are only two ingredients in the capsule, Ketotifen and Microcrystalline Cellulose"... I'm like "WHAT!?! What is microcrystalline cellulose? I specifically requested Vitamin C as the filler." The pharmacist said, and I quote, "We ran out of the Vitamin C and substituted with microcrystalline cellulose a very common filler that is derived from pine trees." I totally flipped out. I said some not-very-nice-words and then burst into tears, both things I rarely ever do. 

Through my sobs, I immediately called her prescribing doctor and let them know what happened. I then emailed Dr. Lawrence Afrin, from University of Minnesota, who wrote the book on Mast Cell Activation. Dr. Afrin is one of only a few specialist on MCAD/MCAS in the United States and has been consulting on my daughters case for the past two months. 

When to Call the Expert

I specifically asked Dr. Afrin if he had ever heard of microcrystalline cellulose causing an allergic reaction and he said this:

"I'm sorry to hear of your daughter's ongoing difficulties.
Yes, I've seen microcrystalline cellulose (MCC) act as a trigger in *some* mast cell patients. Sometimes it's any type of MCC, and sometimes it's specific to the type of plant from which the cellulose has been sourced.  For example, some MCAS patients are senstive to cotton-derived MCC but not wood-derived MCC, whereas other are sensitive to wood-derived MCC but not cotton-derived MCC. (And there are plenty of other potential types of plant sources for MCC, too.)"  

I then started researching microcrystalline cellulose. It turns out MCC is the most common filler in vitamins, supplements, and many prescription medications (although inert fillers are not listed on Rx meds). I then went to the closet with all her previous supplements and guess what. MCC is in almost all of them including the Melatonin she's been taking for almost three years.  I have no way of verifying whether MCC and/or the Lactose is what was making my daughter so sick these past 11 months but I suspect it was a contributing factor. 

Confronting the Problem and Making Peace

I waited a day to calm down then called the Custom Pharmacy. I told the pharmacist straight-up, if my daughter had needed hospitalization or died they would have been liable. I briefly explained my daughters lengthy health history and why we were purposely going through a custom pharmacy to eliminate allergens. In fact, before they filled the prescription I had called and specifically told them it had to be dairy free, gluten free and to use Vitamin C as the filler. The pharmacist agreed, they had screwed up!

To make a long story long (sorry), I explained to the pharmacist my concerns, and that I wanted to make sure this never happened to my daughter or any another person again. After an hour long conversation, the pharmacist told me they would be changing their policy and will be listing all the ingredients, including fillers, on the outside of their bottles. 

My Hope for the Future

My reason for telling this story is because every patient I know with Chronic Lyme or PTLDS is suffering from some food or other sensitivity. I'm not saying every person is allergic to MCC. What I am saying--and I hate to say this because Lyme patients already have a lot on their shoulders--is look into everything you put in your mouth and on your body. Look into your prescription medications-if it upsets your stomach ask what the filler is. Maybe it's not the medication. Look into your supplements--research the "inactive" ingredients. Pay attention to what makes you feel worse. Look for common triggers. Try eliminating things that are potential triggers or allergens for two weeks, then reintroduce them for one or two days, and see what happens.

I was really happy to see Dr. Theo Theoharides "The Mast Cell Master" at ILADS this year. More and more doctors are beginning to understand how infection can trigger MCAS/MCAD and histamine intolerance.  I will be blogging about Dr. Theo's lecture at ILADS soon along with the most common triggers for MCAS/MCAD including the following:

• Infection (bacteria, fungi, parasite, virus) 
• Insect Bites (spiders, ticks, fleas, mosquitos, bed bugs) 
• Foods (dairy, moldy cheeses, wheat, gluten, shell fish, MSG, food preservatives)
• Drugs (alcohol, antibiotics, anesthetics, dextran, aspirin, NSAIDS, opioids, quinine)
• Dyes (food coloring especially Red, radiographic dyes, pigments in makeup) 
• Environmental toxins (pollen, dust, mold, animal dander, heavy metals, perfumes, pesticides)
• Physical and Emotional Stimuli (heat, cold, sunlight, fatigue, stress) 

Moving Forward

Now that we've identified most of my daughters triggers we are planning to test those out with an allergist. My understanding is that with proper treatment we should be able to calm my daughters immune system and eventually be able to relax her restrictions.

Currently, we are running some tests for Mast Cell Activation and looking into pure Luteolin as a mast cell stabilizer. We're also rerunning her Lyme & Co tests to see if her markers have gone down. For the time being I have her on a clean, organic, gluten free, dairy free, sugar free, low histamine diet and she is off all supplements and medications except DYE-FREE Benadryl.

If She Feels Bad Then I Do Too

This week, while I was watching my daughter suffer what seems her thousandth set-back, Rob Thomas's song "Her Diamonds" about his wife's struggle with Lyme really hit home. :'(

And she says oh
I can't take no more
Her tears like diamonds on the floor...

Watch Savannah's Acoustic Version of "Her Diamonds" here

Let me know if you have any questions in the comments below, on my twitter @LonnieRhea or on my FaceBook Page Tenacious PT.