Archive for the ‘Mast Cell Activation Syndrome (MCAS)’ Category

What to Eat When You’re Allergic to Everything?

https://www.lymedisease.org/lymesci-what-to-eat-mcas/

LYME SCI: What to eat when you’re allergic to everything?

by Lonnie Marcum

What are you going to do, when everything your child eats makes her sick? As I’ve explained in my earlier posts about mast cell activation syndrome (MCAS), virtually anything my daughter put in her mouth triggered a serious allergic reaction.

However, with the help of an incredible medical team and my daughter’s determination to succeed, we found a path to healing. I’m sharing what we did in hopes that it can help others in the same boat.

This is part four of a series on mast cell activation syndrome (MCAS) triggered by Lyme and co-infections. Part one, “When the immune system goes haywire,” serves as an introduction to MCAS; Part two, “The agony of mast cell activation syndrome (MCAS),” reviews the five-step process I used to help my child begin healing from MCAS; Part three, “More about healing from mast cell activation syndrome,” outlines the essentials to finding and eliminating food triggers.

I have been writing for LymeDisease.org since 2016. This series on MCAS has generated more comments and questions than anything else I’ve written. By far, the most frequent question I’m getting is how to survive a food intolerance crisis.

Today I will share how we got my daughter past her extreme food sensitivities. Future posts will include identifying mold, environmental and cosmetic triggers, how stress affects mast cells and the immune system, and getting your life back.

Food Crisis 101

At the beginning of this MCAS journey, our routine was very stringent. Once we found the right combination of antihistamines, and she was able to go three months without an allergic reaction, we could relax a little. Believe me, I do know what it’s like to be in food crisis, so I’ve laid out a sample of some of our favorite low-histamine foods below to help others learn the process.

In my daughter’s case, the foods we chose were specific for her genetics and their high nutritional value. Her diet is also gluten-free, dairy-free, low in sugar, low-histamine, low-oxalate, and low in sulfites. Depending on your specific needs, you may not need to eliminate all of the above ingredients, or you may need to eliminate these plus others —like foods high in salicylate, a chemical found naturally in certain foods.

The key for us was to make everything from fresh, wholesome, organic ingredients. During her crisis we went with frequent small meals. Because the act of chewing and digesting requires histamine, smaller doses were less triggering. We also eliminated all leftovers, because “aged” foods are higher in bacteria and will trigger more histamine. For a complete list of low-histamine foods click here:  http://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

As things improved, I cooked two meals at a time. She’d eat one immediately, I’d refrigerate the other in a glass container (no plastics), and she’d eat the next meal within 3-5 hours. (This allowed me to get other things done.)

We also made sure each meal contained one protein, one carbohydrate and at least one fruit or vegetable. The following are a few suggestions of low-histamine foods that we rotated every three to four days during my daughter’s food crisis. Keep in mind if you are adding new foods the name of the game is low-and-slow, as I laid out in my previous post.

Low Histamine Guidelines (adapted from SIGHI)

Avoid 

  • Fermented products (e.g. alcoholic beverages, vinegar, yeast, bacteria)
  • Produce with uncertain freshness (e.g. packaged chopped lettuce, bean sprouts)
  • Canned, finished or semi-finished products (e.g. canned tuna, meal kits)
  • Reheated food (especially fish, meat and mushroom dishes)

Risky

  • Meals from restaurants, snack bars, fast food (due to potential cross contamination of ingredients, uncertain freshness, and uncertain storage time)

Recommended

  • Wholesome, fresh, unprocessed or lightly processed foods.
  • The more perishable and protein-rich the food, the more important it’s freshness (e.g. fish that is caught, cleaned and flash frozen at sea, then refrigerated uninterruptedly until cooked is best)
  • Leftovers must be refrigerated immediately and eaten within hours or frozen.
This is what worked for us

Breakfast

  • Gluten-free oatmeal, quinoa or white rice with a dash of coconut milk or coconut oil
  • Apple, blueberry, nectarine or peach (baked is easier for her to tolerate)
    Lunch

Lunch

  • Sautéed meat in extra virgin olive oil (EVOO*) with seasonings**
  • Gluten-free brown rice noodles or quinoa noodles
  • Boiled carrots, cauliflower, broccoli, or peas (I throw them in with the noodles)

Snack

  • Baked pumpkin or sunflower seeds (soak 6-8 hours, rinse, bake in EVOO at 300 degrees for15-25 min., till done)

Dinner

  • Baked meat, coated in EVOO* and seasonings**
  • Baked butternut, acorn or summer squash, sweet potato (the white one)
  • Sautéed arugula, asparagus, butter lettuce, or watercress (boiled artichoke is another good option)

*I use 100% extra virgin olive oil to sauté or bake everything. If you are salicylate-intolerant, you may have trouble with EVOO. Coconut oil and nigella sativa oil (black seed oil) are also recommended.

**Seasonings: Sea salt, pink pepper, ginger, chives, garlic (small amounts), basil, parsley, thyme, rosemary, and sage (dehydrated herbs are more tolerable when in a crisis.)

Note: I am not a doctor. Food allergies are unique to each individual, so it’s important that you work closely with your doctor or a registered dietitian to find and eliminate your food triggers, then design a balanced plan that works for you.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org .

References:

SIGHI-Leaflet Histamine Elimination Diet Simplified histamine elimination diet for histamine intolerance (DAO degradation disorder)  http://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf

________________

For the previous articles by Marcum on MCAS:

#1:  https://madisonarealymesupportgroup.com/2018/03/13/mcas-lyme-msids/

#2 https://madisonarealymesupportgroup.com/2018/03/26/the-agony-of-mcas/

#3 https://madisonarealymesupportgroup.com/2018/04/04/more-about-healing-from-mcas/

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https://madisonarealymesupportgroup.com/2017/04/17/mast-cell-activation-syndrome-lymemsids/   Our LLMD uses LDA/LDI for those with immunoconfusion with success.  More about the treatment within this link.

https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/  The many benefits of MSM – including allergy symptoms:  

*Reduces cytokines & inflammation (in vitro studies show MSM reduces IL-6 (a marker implicated in chronic inflammation as well as suppressing NO and prostanoids) *antioxidant *free radical scavenger *kills gastrointestinal, liver, and colon cancer cells *restored normal cellular metabolism in mouse breast cancer and melanoma cells *helps wounds heal *increases blood flow *reduces muscle spasms *antiparasitic properties (especially for giardia) *normalizes the immune system *cholinesterase inhibitor *alleviates allergy symptoms *increases energy *improves condition of hair, nails, and skin

More About Healing from MCAS

https://www.lymedisease.org/lyme-sci-more-mcas/

LYME SCI: More about healing from mast cell activation syndrome

MCAS-4-300x300

By Lonnie Marcum

This is part three of a series on mast cell activation syndrome (MCAS) triggered by Lyme and co-infections. Part one is an introduction to MCAS including an interview with Dr. Jill Carnahan. Part two is a description of my daughter’s diagnosis of MCAS and the five-step process we used to get her back on track. In this part, I give more details about specifically how we did it.

Calming the immune system

When trying to calm mast cells, the key is to reduce the number of flares. Eliminating triggers, lowering histamine levels, and getting on the right medication(s) are critical. Every time you have an allergic reaction, it reactivates the mast cells. This domino effect makes the body more sensitive to even minor triggers. The lower you can get your histamine levels and the longer you can go without an allergic-type reaction, the calmer the immune system becomes. In our experience, if you can go three months without a reaction, you are on the road to healing.

Essential steps for healing
Accepting that you have a problem.

This is a tough one. It reminds me of my daughter’s childhood friend, who was diagnosed with diabetes in second grade. After years of failing oral medications, he eventually received an insulin pump that inserts directly into his abdomen. It completely changed the type of sports he could play and the way he had to live his life. But within a year, he had adjusted and could do nearly everything other kids his age did, as long as he adhered to a routine.

My daughter had to come to grips with the fact that she may never be able to roll in the grass or eat many of her favorite foods again. She also had to accept that she’s lost five years of her life and a lot of childhood dreams. Not only that, but fighting our way through the medical system to a diagnosis and treatment left a lot of emotional scars and a type of trauma caused by medical treatment (iatrogenic)– very similar to post-traumatic stress disorder (PTSD). This is where I truly believe a compassionate therapist is needed.

So, to me, healing from MCAS not only requires lowering histamine levels and retraining your immune system, but also retraining your mind, creating a safe environment within your restrictions, and designing a lifestyle that continues to bring you joy.

Identifying your food triggers.

It may take months to find a doctor well-versed in MCAS. In the meantime, I recommend trying to identify your food triggers. A common method for determining food allergies is an “elimination diet.” You eliminate specific foods for one to three weeks, then systematically reintroduce them and watch for symptoms over the next several days.

If you react to a lot of foods, many doctors recommend starting by eliminating the American Academy of Allergy Asthma & Immunology’s eight foods responsible for most allergic reactions:

  • Cow’s milk
  • Eggs
  • Fish
  • Peanuts
  • Shellfish
  • Soy
  • Tree nuts
  • Wheat

We eliminated all of the above, plus foods that were commonly listed as high histamine (see the list I use here:  http://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf) and the preservatives/additives that are known histamine triggers:

  • Artificial food coloring (especially red dye)
  • Benzoates
  • MSG
  • Sulfites
  • Tartrazine

The secret to a healthy elimination diet is to add one healthy food for each food you cut out. For instance, when you eliminate wheat, you add in quinoa or another nutrient dense carbohydrate. (Read about elimination diets here:  https://en.wikipedia.org/wiki/Elimination_diet)

After consulting with my daughter’s doctors and coming up with a list of low-histamine, nutrient-rich foods, we re-introduced them systematically, almost like low-dose immunotherapy.

The first day she would take a small bite and spit it out. If her mouth didn’t break out, the next day she would swallow a small bite, increasing the bite size each time until reaching a full serving. If her mouth tingled or broke out, we would wait several weeks before trying again. We opted to only add one new food every week so we could monitor immediate and delayed reactions. If she didn’t react, we knew these foods could be rotated into her diet every four days.

I will include more information about how we dealt with food issues in my next installment.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org .

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More on MCAS:  https://madisonarealymesupportgroup.com/2017/03/23/rebecca-keith-on-mcas-parasites-lymemsids/

https://madisonarealymesupportgroup.com/2018/03/13/mcas-lyme-msids/

https://madisonarealymesupportgroup.com/2017/04/17/mast-cell-activation-syndrome-lymemsids/ Dr. Carnahan’s article also found here.

Some docs are using LDA/LDI to treat this: https://madisonarealymesupportgroup.com/2016/05/30/new-kids-on-the-block-ldaldi/

 

The Agony of MCAS

https://www.lymedisease.org/lyme-sci-mcas-agony/

LYME SCI: The Agony of Mast Cell Activation Syndrome (MCAS)

Lonnie Marcum, March 2018

In the winter of 2016, my 17-year-old daughter was dying. She had severe allergic reactions every day, was in constant pain, and was losing weight at a rate that was not sustainable to life. She had reached the end of her rope, and I was completely out of ideas on where to turn for help.

Eighteen months earlier, after a long illness and finally completing treatment for Ehrlichia chaffeensis, Bartonella and Lyme disease, she had been doing great. Unfortunately, she soon caught the flu and then everything went south.

Over the next year, one setback after another landed her in the hospital every other month with atrial-fibrillation (irregular heartbeat) and/or near-anaphylaxis (acute allergic reactions). Each trip to the doctor took one more piece of hope away from us, since no one could pinpoint the cause of her rapid decline.

Over time, my daughter developed allergies to soaps, perfumes, juices, fruits, vegetables, and lunch meats. Eventually, she was down to only two foods that didn’t make her lips swell, mouth break out in blisters and throat tighten–sauteed chicken and brown rice noodles.

Not knowing what to do, I reached out in desperation to the “LymeParents” Yahoo group. Another mother recognized the symptoms I was describing as mast cell activation syndrome (MCAS) and connected me with Dr. Lawrence Afrin at University of Minnesota. Dr. Afrin consulted on my daughter’s case, then referred us to Dr. Mark Renneker, a mast cell specialist at the University of California, San Francisco.

Soon, she received a diagnosis of MCAS, and with it a path to healing.

Coincidentally, one month after my daughter’s diagnosis, I attended Dr. T.C. Theoharides’ lecture on mast cell activation at ILADS in Philadelphia. In his words:

Mast cells are the “universal alarm cell” that starts the inflammatory cascade. They can be triggered by infection, allergens, environmental factors like pollution, or even emotional stress. Once that happens, mast cells set into motion a series of inflammatory reactions, including the activation of immune cells and the release of tumor necrosis factor-alpha (TNF-a), a pro inflammatory protein or cytokine.

If you or a loved one are in a similar situation, here’s what you need to know.

The Diagnosis

MCAS is a clinical diagnosis based upon signs, symptoms and response to treatment. There are a number of tests available to confirm the diagnosis, but negative tests do not rule out MCAS.

(For a complete guide to the diagnosis of MCAS, click here:  https://jhoonline.biomedcentral.com/articles/10.1186/1756-8722-4-10)

Mast Cell Activation Diseases

Mast cells are a normal part of our immune system. They are located in every organ and connective tissue of the body. When mast cells detect stress, injury, toxins or infection, they release specific chemicals which trigger an immune response. Think of them as sentries or guards.

When mast cells perform properly, they are our friends. When mast cells are agitated or over-reactive, the immune system goes haywire and starts to attack the body, triggering auto-inflammatory processes or some types of autoimmune illnesses.

There are two major forms of mast cell activation diseases (MCAD)

  • Mastocytosis—the abnormal accumulation of mast cells in one or more organ systems (cardiovascular, central nervous, digestive, endocrine, genitourinary, lymphatic, muscular, peripheral nervous, respiratory) which is diagnosed by a bone marrow biopsy or a C-Kit genetic mutation.
  • Mast Cell Activation Syndromes—the inappropriate release of mast cell mediators including: histamine, interleukins, prostaglandins, cytokines, chemokines, and heparin.

As far back as 1999, researchers were able to demonstrate how Borrelia burgdorferi induces mast cell activation, contributing to greater illness in Lyme disease.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC96436/

Somehow, I feel this fact has remained under-appreciated until just recently.

(To view my previous blog on symptoms of MCAS, click here: https://www.lymedisease.org/mast-cell-activation-immune-system-goes-haywire/)

PTSD of the Immune System

When I describe my daughter’s condition to non-medical folks, I say it’s like her immune system has post-traumatic stress disorder (PTSD). After going a year with multiple untreated infections, her immune system was very depleted, and the combination of antibiotics she needed to fight her infections added additional stress. As she completed antibiotic treatment for her infections, we added supplements to boost her immune system and promote healing. Or so we thought.

Unbeknownst to her doctors and me, one of her prescription medications (ketotifen) contained lactose, which she is intolerant to. In addition, she had developed an allergy to microcrystalline cellulose (MCC), one of the most common fillers in prescription medications, vitamins and supplements. Eliminating these allergens was a major turning point in her healing.

Our Five Steps to Healing

Step 1 Reduce or eliminate mast cell triggers (common triggers)
  • Infection (bacteria, fungi, parasite, virus)
  • Insect bites (spiders, ticks, fleas, mosquitos, bed bugs)
  • Stress (heat, cold, fatigue, emotional stimuli)
  • Foods (dairy, fermented or aged foods, wheat, shell fish, sugar, preservatives)
  • Drugs (alcohol, hormones, antibiotics, anesthetics, opioids, aspirin, NSAIDS, excipients)
  • Dyes (food coloring, radiographic dyes, pigments in makeup)
  • Environmental toxins (pollen, dust, mold, animal dander, heavy metals, pesticides)
  • Noxious odors (perfumes, smoke, exhaust fumes, smog)

Step 2 Assemble the “A TEAM” (sample)

  • Physician knowledgeable about Lyme and other tick-borne diseases (treat infections)
  • Physician knowledgeable about mast cell activation syndrome (lower histamine, stabilize mast cells)
  • Psychotherapist (emotional support)
  • Physical therapist (modalities for pain, lymph drainage, home care instructions)
  • Doctor of Osteopathy (functional medicine, supportive hands-on therapy)

Step 3 Find the right combination of medications/supplements

Many people with mast cell issues will improve by taking antihistamines. Antihistamines are medications that block or inhibit the histamine receptors on mast cells and other cells found throughout the body.

Histamine is a unique chemical produced primarily by mast cells that causes inflammatory reactions and the itching feeling most of us are familiar with. Histamine also signals the immune system, regulates the digestive system, and acts as a neurotransmitter in the brain, spinal cord and uterus.

There are at least five different types of cells that respond to histamine (H1-H5 receptors) found throughout the body, although H1 and H2 appear to be the most common.

Antihistamines are classified by the type of receptor that they inhibit as listed below:

  • H1 blockers—act throughout the body (Allegra, Benadryl, Clarinex, Claritin, Silenor, Vistaril, Xyzal, Zyrtec, etc.) Note: Those that cause drowsiness cross into the brain.
  • H2 blockers—act mostly in the stomach (Pepcid, Prilosec, Tagamet, Zantac, etc.)
  • H3 blockers—act in the brain (Mostly experimental: Ciproxifan, Pitolisant)

Leukotrine inhibitors —act primarily in the airways (Accolate, Singular, Zyflo)

Mast-cell stabilizers—strengthen or stabilize the mast cell to reduce the release of histamine and other inflammatory chemicals (Cromolyn, Ketotifen, Hydroxyurea)

Tricyclic antidepressants—antidepressant that also sedate H1 receptors in the brain (Amitriptyline, Doxepin, Nortriptyline etc.)

Tyrosine kinase inhibitor—inhibits certain types of proteins that control a wide range of functions including cell growth (Imatinib)

Natural antihistamines and mast-cell stabilizers—natural supplements that act to block or clear histamine and stabilize mast cells (alpha lipoic acid, ascorbic acid, B6, diamine oxidase enzymes (DAO), luteolin, N-acetylcysteine (NAC), Omega-3’s, riboflavin, SAMe, quercetin, etc.)

Step 4 Customize Nutrition

Patients with certain genetic defects are more prone to MCAD. Looking into your genetics can help determine your predisposition to MCAD and/or histamine intolerance and help you design a customized nutrition plan.

Genetic defects related to MCAS:
  • KIT-D816V—KIT is a master regulator protein found on and in mast cells. A KIT mutation typically results in the mast cell being constantly activated. About 90% of patients with mastocytosis have a KIT-D816V mutation (there is a PCR test for this mutation).
  • MTHFR—The body makes several enzymes called MTHFR that are critical for the production of folate and many cellular functions. Patients with MTHFR defects may have an inability to clear histamine leading to MCAS and histamine intolerance.
  • HNMT—In the central nervous system, histamine is broken down by histamine methyltransferase (HNMT). Patients with a lot of HNMT defects will have trouble clearing histamine from the brain and nerves. Moodiness, sleep disturbance and frequent rashes or hives can be a sign of this.
  • ABPI—In the digestive tract, histamine is broken down by diamine oxidase enzymes (DAO). Defects in ABPI lead to lower levels of DAO and higher levels of histamine.
  • HLA—Variations in the HLA gene can increase the chances of gluten intolerance.
    VDR—VDR defects may lead to lower levels of Vitamin D, which is critical to immune health.
  • MAT—MAT gene is involved in the conversion of the amino acid methionine into SAMe. SAMe has 100s of critical functions throughout the body. If vitamin B12 makes you feel sick, you may have a lot of MAT defects. Your doctor can order blood work to check methionine and SAMe levels.

Nutrition

Genova Diagnostics, Tree of Life, Nutrahacker and Genetic Genie are the tools we used for my daughter. We also ran a complete vitamin and mineral panel to pinpoint nutrient deficiencies. Then, we designed a custom nutrition plan that was specific to her needs—I’ll describe it in detail in my next post.

Basic diet: Clean, fresh (nothing cured, processed or fermented), organic, gluten-free, dairy-free, dye-free, sugar-free, low-histamine, low-citrus, low-oxalate, low-nightshade.

Step 5 Stick to a Routine

Maintain the same sleep schedule
Maintain the same eating schedule
Maintain the same basic level of activity from day to day

Putting it all together

These steps may seem daunting. But when you are in a crisis like my daughter was, you are willing to go to extremes to get your life back. In my next post, I will share more details about what precisely we did.

Note: I am not a doctor. The information here represents my personal opinions and experiences. It is for informational purposes only—it is not intended to treat, diagnose, cure or prevent any disease.

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org .

References:

Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options.

Full List of Publications and Presentations by Lawrence B. Afrin, M.D.

Borrelia burgdorferi Spirochetes Induce Mast Cell Activation and Cytokine Release

Recent Publications and Presentations by Theoharis C. Theoharides, Ph.D., M.D.

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Great, great information here.  Many Lyme/MSIDS patients will improve dramatically when they consider MCAS and take active steps like the ones mentioned here.

Another option not mentioned is LDA/LDI.  My daughter’s Mast Cell issues are nearly resolved after this treatment that helps the immune system recognize “friend from foe.”  Go here for more on LDA/LDI:  https://madisonarealymesupportgroup.com/2016/05/30/new-kids-on-the-block-ldaldi/

For more:  https://madisonarealymesupportgroup.com/2017/04/17/mast-cell-activation-syndrome-lymemsids/

https://madisonarealymesupportgroup.com/2017/03/23/rebecca-keith-on-mcas-parasites-lymemsids/

 

 

 

 

 

ME/CFS Summit – “Test for Lyme”

https://www.medscape.com/viewarticle/893766?nlid=121255_4503&src=wnl_dne_180313_mscpedit&uac=166940EN&impID=1580105&faf=1#vp_1

Much Can Be Done to Ease ‘Chronic Fatigue Syndrome’ Symptoms

Miriam E. Tucker, March 12, 2018

SALT LAKE CITY, UT — The illness commonly known as chronic fatigue syndrome is complex and currently incurable, but clinicians can still do a great deal to manage symptoms and improve patients’ quality of life, experts agree.

In a 2-day meeting held March 2 and 3, 2018, specialists in the condition, now termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), met to discuss their assessment and treatment approaches. The aim of the “summit,” organized by Lucinda Bateman, MD, and held at her Bateman-Horne Center facility here, was to initiate development of expert consensus ME/CFS guidance for primary care and specialist clinicians, and to identify research priorities to address major knowledge gaps.

“One of the messages I’d like to send to physicians is not to have an all-or-nothing approach to this illness, but to break it down into its parts, and see what you can get hold of with the history, objective markers, and clinical intuition. And then, it’s not unreasonable to try some things that are not harmful or expensive,” Bateman told Medscape Medical News.

The 13 panelists, who hail from primary care, infectious disease, immunology, neurology, endocrinology, pediatrics, and integrative medicine, discussed and prioritized elements of history-taking, physical exam findings, diagnostic tests, and treatment approaches for each of the illness’ major components. The core features include fatigue, impaired function, postexertional malaise, sleep dysregulation, neurocognitive impairment, and orthostatic intolerance; other commonly reported features are widespread pain, immune dysregulation, and infection.

Panel members focused on approaches they have found to be most helpful and that can be accomplished in primary care, as well as more advanced modalities that would be more feasible in specialty practices.

Assessing the Illness

The document the group produces will endorse the 2015 Institute of Medicine diagnostic criteria, which defineME/CFS as 6 months of unexplained fatigue with substantial functional impairment, postexertional malaise, unrefreshing sleep, and either cognitive dysfunction or orthostatic intolerance. The symptoms must be moderate to severe and present at least 50% of the time. (Five summit participants, including Bateman, were on the writing committee for that report, and three others served as reviewers for it.)

Assessing functional capacity is key, Bateman said.

“It’s an illness that impairs people’s ability to function in their daily lives. Clinicians need to ask about function, and what happens when people exert themselves both physically and cognitively.”

One revealing question is, “What would you be doing now if you weren’t ill?” Typically, as opposed to depressed patients, those with ME/CFS will have a laundry list. “Our patients are trapped in bodies that don’t work,” Bateman said. “They’re desperate to do more.”

Laboratory tests such as complete blood count with differential, complete metabolic panel, erythrocyte sedimentation rate and C-reactive protein, antinuclear antibody, rheumatoid factor, lipid panel, thyroid-stimulating hormone, and celiac screen should all be performed to investigate symptoms, but are often unhelpful. (As reported previously by Medscape Medical News, evidence suggests that the inflammatory cytokines involved in ME/CFS are different from those that induce C-reactive protein.)

In contrast, assessments that often yield valuable information in patients with ME/CFS include evaluation for orthostatic intolerance and autonomic dysregulation (ideally via tilt-table, but also can be accomplished with the 10-minute “Lean” test), and laboratory tests for Lyme immunoglobulin G (IgG) and IgM;lymphocyte subsets; IgG subclasses; Epstein-Barr virus, including early antigen antibody; herpes viruses; urine or serum markers of mast cell activation syndrome; small intestinal bacterial overgrowth; and natural killer cell function (almost universally low in patients with ME/CFS).

Brain imaging with magnetic resonance imaging or electroencephalography may be indicated in patients who exhibit “brain fog,” headaches, or other neurocognitive symptoms.

“A lot of the testing we do is the differential diagnosis, and we’re looking for comorbid conditions, treatment targets, and subgroups, like people with [small intestinal bacterial overgrowth] or mast cell activation. In the clinical setting, we don’t have to make sense of it all. We just have to identify it, and see if the patient responds to treatment,” Bateman said.
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MCAS & Lyme/MSIDS

https://www.lymedisease.org/mast-cell-activation-immune-system-goes-haywire/

by Lonnie Marcum
MAR 2018

Mast Cell Activation: When the Immune System Goes Haywire

AdobeStock_114038733-300x169

Mast cell

We’re hearing from increasing numbers of Lyme patients who have suddenly developed serious allergic reactions to foods they used to be able to eat with no problem whatsoever. Many have learned that this can be a sign of Mast Cell Activation Syndrome (MCAS). Sometimes, the condition is referred to as Mast Cell Activation Disorder (MCAD).

So what exactly is MCAS, anyway? And what can be done about it?

Mast cells are part of the immune system and are present in nearly every tissue of the body. Their purpose is to signal when a toxin, infection or foreign invader has entered the body, so that the immune system can then launch the proper attack.

Do you have Lyme disease? Use our symptom checklist today:  https://www.lymedisease.org/lyme-disease-symptom-checklist/

When operating properly, mast cells are our friends. But when the system goes haywire and too many mast cells are triggered at once, this can result in massive inflammation that brings all kinds of problems.
Symptoms of MCAS can include skin rashes or hives, lip swelling, extremity swelling, itching, flushing, abdominal pain, digestive issues, nausea, diarrhea, asthma, heart palpitations, anxiety, depression, lack of concentration, low blood pressure, and fatigue.

In the following “Better Health Guy” video, Scott Forsgren interviews Dr. Jill Carnahan, who treats patients with MCAS in her functional medicine practice in Louisville, Colorado.

 Approx. 50 Min

Join LymeDisease.org
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For more on MCAS:  https://madisonarealymesupportgroup.com/2017/04/17/mast-cell-activation-syndrome-lymemsids/ Dr. Carnahan’s article also found here.

Some docs are using LDA/LDI to treat this:  https://madisonarealymesupportgroup.com/2016/05/30/new-kids-on-the-block-ldaldi/

Another presentation on MCAS & parasites:  https://madisonarealymesupportgroup.com/2017/03/23/rebecca-keith-on-mcas-parasites-lymemsids/