Archive for the ‘diet and nutrition’ Category

3-Part Series on Genetic Mutations

Audio here:

https://madisonarealymesupportgroup.com/wp-content/uploads/2018/04/folic-acid-and-mthfr.mp3

UNCOVERING GENETIC MUTATIONS: HOW TO TEST FOR THEM

Dr. Doni explains why she recommends genetic testing, the different kinds of tests available, and what they can tell you about your overall health and well-being.

Part 2 of Dr. Doni’s Series on How Genetic Mutations Affect Your Health

genetic testing, genetic health conditions, genetic mutations, chronic health issues, genetic treatments, MTHFR, MTHFR mutations, MAO, COMT, folic acid, active folate, SNP, single-nucleotide polymorphismIn this blog series, I will be talking all about genetic mutations, how you can easily test for them, how they can affect your health, and what you can do to address them. Testing for and addressing genetic mutations is one of the newest approaches in healthcare and one that many practitioners have not yet integrated into their practices. At the same time, this relatively new ability to determine gene mutations combined with research that shows us what we can do about them can truly be power at your fingertips when it comes to managing your health.

Last week, we discussed how knowing which genetic mutations you have makes it possible to address the underlying causes of your health issues. I emphasized that when I talk about genetic mutations, I am referring to mutations in DNA that are not life threatening in the immediate future. What we are looking at are mutations that decrease processes in the body that affect the way vitamins are activated, toxins are detoxified, and neurotransmitters are made or destroyed. As a result, they can make you more likely to feel tired and anxious, and to have allergies or autoimmunity, for example. But none of the health implications are set in stone, because we can influence the outcome with stress remedies, lifestyle, diet, and nutrient choices.

We all have some of these mutations. The question is which?

This week’s blog is all about the testing that is available and how the results can inform what we do to improve your health.

TESTING FOR GENETIC MUTATIONS

Testing for genetic mutations and then determining how they are affecting your health usually comes down to a three part process:

  • Phase 1: Getting your genetic data
  • Phase 2: Translating that to genes and SNPs
  • Phase 3: Tests to help you to understand how those SNPs are influencing your health

Phase 1: Getting Your Genetic Data

There are a bunch of labs that now offer varying amounts of genetic testing via saliva, blood, and cheek swab. I’m sharing a few of them here to give you a sense of the options.

Saliva tests that you can order yourself online (usually $199 or less):

These three companies have a genealogy focus rather than a health focus–they show your ancestry based on your DNA and provide interactive ways to connect with your relatives online. What they don’t do is give health information related to your genes, but they will allow you to download your genetic data, which can then be used to determine which mutations you have.

Tests that are ordered by a clinician:

  • GENOMIND – A saliva test for genes that affect mood and mental health
  • PROMETHEUS – A blood test for genetic predisposition to Celiac Disease
  • PHARMASAN – Saliva tests, with various panel options, to test for common genetic mutations
  • KIMBALL GENETICS – A cheek swab (or buccal swab) test for genes associated with Celiac Disease
  • Quest, LabCorp, and other labs also offer blood tests for certain genetic mutations such as MTHFR

Phase 2: The Raw Data and How to Interpret It

Keep in mind that the FDA prohibits open access labs from offering health-related information based on your genetic panel. This means that the saliva tests you can order online will be for ancestry information only. However, they can provide you with what is called your “raw data,” a number/letter listing of your genes. Hidden within what appears to be a scramble of letters are your genetic mutations. When your genes are compared to the human genome, it is possible to find the differences. These differences are called SNPs or mutations. These differences in your DNA are what make you YOU and can affect processes and systems in your body when they’ve been activated by stress.

But don’t worry—you don’t have to do all the letter matching yourself. There are software programs that will upload your raw data and provide a neatly organized report showing your mutations, and whether they are homozygous or heterozygous. Homozygous means that there is a mutation on both strands of DNA and heterozygous means that the mutation is on just one strand.

Here are links to three online tools that process raw data:

Note: Please use these tools with caution! Be careful with your personal information and be prepared to see information about your genetic health. Consider having your practitioner help you with this step in the process.

Even using these programs, it can be time-consuming and overwhelming to get the data and then successfully process it, not to mention the difficulties of interpreting the data if you don’t know what you are looking for. If you would prefer to have help processing and interpreting your genetic data, you may want to consult with a practitioner who has been trained to do just that. YOU CAN FIND PRACTITIONERS IN YOUR AREA BY SEARCHING HERE.

I’m happy to help as well. Learn about scheduling an initial appointment with me, in-person or by phone/Skype) on the MAKE AN APPOINTMENT page. I have developed a consultation package for just that situation, so I can support you to process and interpret your raw data and then advise you on how to use the information to maximize your health. Find out about that package below.

What the Tests Tell Us

The saliva panels you order for yourself, and the raw data they provide, will give you a fairly comprehensive list of genes, but will not include all of them. However, once the data has been run through a program that creates a report you will have more information than you would if you did a condition-specific genetic panel (such as those ordered by a clinician’s office), but you may still find that some of the genes you want to know about are missing simply because they were not included in the original data. Ongoing research will continue to increase our knowledge over time.

For most people, however, you will get plenty of information about many of the genetic SNPs that have been researched enough for us to have an idea how to address them and how they may be related to your current health issues.

Phase 3: How SNPs Are Affecting Your Health

If you find that you do have SNPs that may be affecting your health, the next step is to do a urine organic acids panel and potentially also a methylation panel (this would be a blood test) if you have SNPs that affect methylation. These tests show us the metabolites in your body that indicate the function of the various processes and enzymes that are determined by your genes. Remember that having a mutation doesn’t necessarily mean it is affecting your processes and health. It is only by checking your urine and blood that we can find out the influence your genes are having on you! These two would have to be ordered by a practitioner.

If your SNPs indicate that you may be predisposed to allergies and food sensitivities, then it would be helpful to do an IGG AND IGA FOOD SENSITIVITY PANEL to see whether you have developed reactions to certain foods so you can adjust your diet accordingly. At the same time, if you have SNPs related to neurotransmitters, such as serotonin, dopamine, and norepinephrine, then testing your neurotransmitters levels (a urine test) can be useful. Cortisol, our main stress hormone, can be both influenced by your SNPs and influence how your genes affect your health—so testing your cortisol levels (four timed saliva samples) will help you understand what you can do to improve your health.

Depending on your specific genetics, there may be other tests that you decide to do to help you get a clearer sense of whether SNPs are playing a role in your current health issues. That may include blood work for autoantibodies, stool tests that tell us about your digestive function, and blood and/or urine tests to show nutrient levels in your body.

To help you get started with testing for your genetic mutations, how they are influencing your health and what to do about it, I created a GENETIC PROFILE SOLUTIONS PACKAGE. It includes an comprehensive initial appointment with me (in-person or by phone/Skype) so that I can learn all your health concerns and review your records. Then it includes the testing mentioned in this article and follow up sessions so that we can review your results and create a plan to support your health. It is the most cost effective way to get this information and a plan built for you.

WHAT TO DO ONCE YOU HAVE YOUR RESULTS

I want to emphasize that while it is possible to explore your genetic mutations by yourself, and you may gain some useful information, I do encourage you to choose a practitioner to support you in the process. The reason I say this is that the processes in the body are highly responsive and dependent on each other. Say you find one genetic mutation—MTHFR for example—and begin to address it by taking methylfolate*. Well, if you also have SNPs on MTRR, COMT, CBS, and/or BHMT, then you may actually feel worse from taking 5MTHF. This is because you will have supported one step in the process, but not the other steps, and a ripple effect can result. A trained practitioner will be able to help you understand how your various SNPs are interrelated and how to address them in a way that hopefully avoids aggravations (and making you feel worse).

If you are curious, but not sure what you need, you could start by scheduling an initial consultation with me. That way we can review your case and I can help you get a sense of your next steps. You can schedule a consultation ONLINE HERE or by contacting my office HERE.

At the very least, testing for genetic mutations is a learning process. You’ll be learning about your body and what it needs, and how it responds to changes. But you’ll want to go about this slowly and carefully so as not to rock the boat too much.

*Please keep in mind that any and all supplements—nutrients, herbs, enzymes, or other—should be used with caution. My recommendation is that you seek the care of a naturopathic doctor (with a doctorate degree from a federally-accredited program) and that you have a primary care physician or practitioner whom you can contact to help you with individual dosing and protocols. If you ever experience negative symptoms after taking a product, stop taking it immediately and contact your doctor right away.

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Photo credit: “DNA” by STEFANO is licensed under CC BY-SA 2.0. Changed from original: Added text overlays.

UNDERSTANDING THE METHYLATION CYCLE AND ITS EFFECT ON HEALTH

Naturopathic Doctor Doni Wilson explains how our genetic makeup defines which enzymes need extra support in your body and the role the methylation cycle plays.

Part 3 of Dr. Doni’s Series on How Genetic Mutations Affect Your Health

genetic health conditions, genetic mutation, chronic health issues, methylation, methylation cycle, genetic testing, genetic treatments, MTHFR, MTHFR mutations, SNP, single-nucleotide polymorphismIn the first two parts of THIS BLOG SERIES, we explored how genetic mutations (or SNPs) can affect our health and how we go about finding out which SNPs you have as the first step on the road to optimal health.

Understanding your genetic mutations (SNPs) will help you identify which processes and enzymes may need support in your body and your metabolism.

Once you have this information you’ll be able to design exactly the right support for your body including making the right diet choices, taking the right nutrients and optimizing the way in which you respond to stress, all based on your individual needs.

Today I’m going to discuss the enzymatic pathways in the methylation cycle that influence not only the way you feel from day to day but also your risk of disease in the long run. Then, next week, I will share my 8 STEPS TO A HEALTHY METHYLATION CYCLE. First, before diving into the enzymes, let’s talk about why the methylation cycle is important and how it affects your health.

Why is The Methylation Cycle Important?

The methylation cycle is important because it takes the nutrients from our food (and supplements) to make the energy our bodies need to work properly. I often refer to it as the “B vitamin Cycle” because this is where the B vitamins (B1, B2, B3, B6, B9, B12) get used in our bodies and why B vitamins are so important for our health.

Once through the methylation (B vitamin) cycle, our bodies use methyl-groups to make healthy cells and neurotransmitters (for mood), as well as for removing toxins (in the liver), fighting infections and protecting us from oxidative stress.

That’s why we often hear about how important B vitamins are to feeling well and for recovering from stress. When you are stressed, your methylation cycle has more work to do and needs more B vitamins to get that work done.

It is quite amazing when you think about it that the processes involved can have such a significant influence throughout your body. When methylation is working, you’re more likely to feel full of energy, in a good mood; you will feel generally well. When it is not working, you will feel tired, depressed, irritable, run-down, susceptible to infections, foggy-brained, and just plain “toxic.”

Understanding the Methylation Cycle

Understanding the methylation cycle starts with thinking of dominos lined up. Just as when the dominos start to fall—each domino toppling the next—when enzymes start processing nutrients, one enzyme affects the next. And just as with dominos, if one is out of line and doesn’t topple onto the next one (or it stops working), it causes a backup that inhibits the enzymes that follow and this, in turn, affects how we feel and how well we function.

More specifically:

  1. Research shows that decreased function of the enzymes in the methylation cycle can affect your health and increase your risk of heart disease, cancer, chronic fatigue, mood disorders, diabetes, and aging in general. If you want to read more on this subject you can check out the research studies listed at the end of this article, and refer to the other articles in THIS BLOG SERIES.
  1. Methylation is important for mitochondrial function and energy production. Low mitochondrial function and low methylation can lead to low energy, LOW THYROID FUNCTION, decreased MEMORY, and more. READ MORE ABOUT MITOCHONDRIA IN THIS ARTICLE.
  1. Methylation also affects your:
    – neurotransmitter levels, which can lead to ANXIETY AND DEPRESSION,
    – immune function, including the likelihood that you’ll experience allergies this spring,
    – liver detoxification, which has to do with how your body gets rid of toxins, and
    – fertility, including risk of MISCARRIAGE
  1. And methylation influences the production of GLUTATHIONE, a major antioxidant and protector of your cells.
  1. Ultimately methylation affects the ability of your body to make new healthy cells.

The Key Enzymes in the Methylation Cycle:

Enzymes are given nicknames based on the first letter of each of the chemical words in their name. So they are often called by 3 to 5 capital letters, the last of which describes that enzyme’s function. For example, R stands for reductase, and T is for transferase (it transfers a molecule from one substance to another). I don’t want you to have to worry too much about those details. What is more important is to understand how the enzymes relate to one another and where they lead in the end.

Here are the main enzymes that are involved in the methylation cycle and what they do:

  • MTHFR – stands for Methylenetetrahydrofolate reductase. It converts folic acid to methylfolate (5MTHF or B9) using B2.
  • MTR – Methionine Synthase uses methylfolate (folate) and methylcobalamin (B12) to turn homocysteine into methionine.
  • MTRR – Methionine Synthase Reductase creates methylcobalamin (B12) from cobalamin.
  • MAT – creates S-Adenosyl Methionine (SAM) from methionine.
  • BHMT – The backup system (so to speak) in the liver and kidneys that can make methionine from choline and TMG.
  • CBS – Removes homocysteine from the methylation cycle (using B6) and converts it into cysteine and glutathione.

How Do These Enzymes Affect Each Other?

The methylation pathway starts with MTHFR. MTHFR has one job – to turn folic acid into folate. Folic acid is a man-made nutrient that we get from processed foods that are “fortified” with B vitamins, and from (lower quality) multivitamins and B complex supplements. On the other hand, we can skip the MTHFR enzyme step by eating foods that naturally contain folate, like raw spinach, and by taking vitamins that contain folate (or methyl-folate).

Research indicates that at least 45% of people have an MTHFR mutation and they consequently have a decreased ability to turn folic acid into folate (the process doesn’t completely stop; it merely decreases by 40 to 80%).

If you have an MTHFR mutation, your body is less able to use folic acid in the methylation cycle, which means you won’t get the benefit of the B vitamin cycle working optimally, and that can increase your risk for many health conditions, including:

What is the Treatment for MTHFR and Methylation?

The best treatment is for you to AVOID folic acid and instead ensure that you are getting an adequate amount of folate, as well as the other B vitamins involved in the methylation cycle.

It is extremely important to know that when you start taking (preferably before you start taking) methyl-folate, that you are under the care of a practitioner (like me) who is trained in how to optimize methylation to ensure you are taking the right dosage and that it is having the desired effect.

Over the years helping people with methylation, I have developed a step-wise process to ensure optimal outcomes. Here are the beginning essential steps:

Essential Steps to Take Prior to Addressing Methylation (before taking folate):

  • Know your Homocysteine level – this is a blood test that can be done at a regular lab.
  • Know your methylation SNPs – order a 23ANDMEsaliva test kit, then when the results are in, give the data to your methylation practitioner who will run it through software that identifies your SNPs.
  • Check your urine sulfur level – your methylation practitioner will be able to guide you on how to do this.
  • Complete a trial of taking hydroxo-B12 for at least 5 days – your methylation practitioner will guide you.

Once you have completed these steps, and if your homocysteine level is higher then 7, then your methylation practitioner will guide you to start taking methyl-folate, along with other important B vitamins in the methylation cycle, starting with low dosages. Each person’s body responds differently as the methylation cycle optimizes, so it is important to go slowly so that we can find out how your body will respond and address any adjustments that need to be made.

This is how your methylation cycle gets the nutrients it needs to keep you healthy. And it is NOT just about methyl-folate. The next steps in methylation cycle need to be addressed as well. Methyl-folate connects with the next ‘dominos’ in the chain–MTR, MTRR, MAT, BHMT, and finally CBS.

MTRR creates methylcobalamin (a form of vitamin B12) and then MTR uses that methylcobalamin, together with methylfolate (the methylfolate we just spoke about), to turn a substance called homocysteine into another, called methionine. Then, in the next step, MAT uses methionine to make yet another crucial substance called SAM or S-Adenosyl Methionine.

BHMT is a “shortcut” through the middle of the methylation cycle that allows your body to use choline (such as from eggs, shrimp, poultry, salmon, and leafy greens) instead of folate and B12 to make methionine, which is (again) turned into SAM by MAT.

SAM, the end result of this particular domino line, creates a much needed methyl group which is then passed on to other pathways that protect your DNA and cells, and make your neurotransmitters and other important pathways, including energy-production pathways in your mitochondria. So many good things come from the methylation cycle!

In the end, SAM turns back into homocysteine so it is ready to go around the cycle again (unlike dominos, in our bodies, the process is continuous). That’s why measuring homocysteine in your blood can be so useful for knowing how well your methylation cycle is working.

The final enzyme in this process is called CBS; this acts as the methylation cycles built-in ‘drain’ by removing homocysteine and using it to process ammonia and make glutathione. Glutathione is our most important anti-oxidant, so SNPs on CBS can make for increased OXIDATIVE STRESS and higher ammonia levels, leading to fatigue and achiness. SNPs on CBC can also affect sulfur levels in your body, which is why it is important to check your urine sulfur before starting to address methylation.

Where Do We Run Into Trouble?

The methylation cycle is super sensitive to stress!

When you are emotionally or physically stressed (and your cortisol levels increase), the enzymes slow down and the amount of SAM produced decreases. At the same time, your body needs more SAM to help process the adrenaline produced by stress.

This means that right when you are most stressed, you are more likely to feel worse! It is when you are stressed that you have an increased need for the nutrients that help your enzymes work well.

Things that bring stress to your methylation cycle include:

  • Oxidative stress, READ MORE IN THIS ARTICLE
  • Alcohol (yes, as in wine, beer and liquor)
  • Yeast die off, from having and treating yeast (also known as candida or thrush) whether with herbs or medications
  • Elevated nitric oxide, which is common with chronic fatigue, inflammation, autoimmunity and Lyme disease; nitrous oxide gas treatment at the dentist will also increase nitric oxide
  • Autoimmune antibodies
  • Inflammation in general
  • Food sensitivities and leaky gut, READ MORE IN THIS ARTICLE
  • TOXINS in the environment and in our personal care products
  • Heavy metals (like mercury, lead and aluminum)

So it is important to address your stress. By decreasing exposure to stresses and by helping your body to recover from stress, you’ll be helping your methylation cycle work better and therefore, preventing health issues. The way to help your body recover from stress is to find out HOW YOUR ADRENAL GLANDS ARE FUNCTIONING and to support them to recover using nutrients, herbs, and what I call “STRESS REMEDIES.” I find that it is essential to address adrenal distress when addressing methylation.

Where to Go From Here?

It can seem complex, but it can pay off to address methylation in terms of your short and long term health. I’ve seen it make a difference for my patients, and I want that for you too.

Working with a practitioner who understands methylation and how to address it appropriately can make all the difference. For some people methylation can be optimized in a matter of weeks or months. For others it can take years. And when everything falls into place, wow, how exciting and how much of a difference it can make in getting you back to feeling well.

If you would like to explore this further you may want to check out my GENETIC PROFILING SOLUTIONS PACKAGE HERE. With this package you’ll meet with me in-person or by phone/Skype to review your case and records. Then I’ll be able to help you with genetic testing and panels to help us know how your body is being affected by mutations so that we can then create a clear plan for you including diet recommendations and supplements.

If you are not sure about the whole package, then you can start with a COMPREHENSIVE HEALTH BREAKTHROUGH INITIAL CONSULTATION WITH ME and then we can decide what is needed for your health goals.

Another option is to start by following the STRESS REMEDY PROGRAM – the 7-day or the 21-day – which include step by step instructions for changing your diet and implementing daily activities that reduce your stress level. They also come with my recommended PROTEIN SHAKE. All of this will start optimizing your methylation cycle. Then you’ll be in a better place to start getting into the details with SNPs and nutrients to optimize your health further.

To be sure you receive articles from me in the future, you can subscribe to my weekly WELLNESS WISDOM NEWSLETTER, and with it you’ll receive a free ebook called A Guide to Adrenal Recovery.

Further Reading

Lin PT1, Cheng CH, Wei JC, Huang YC. Low plasma pyridoxal 5′-phosphate concentration and MTHFR 677C–>T genotypes are associated with increased risk of hypertension. Int J Vitam Nutr Res. 2008 Jan;78(1):33-40.

Qi YH1, Yao LP2, Cui GB3, Liang J1, Shao QJ1, Yan LF3, Du P4. Meta-analysis of MTHFR C677T and A1298C gene polymorphisms: association with the risk of hepatocellular carcinoma. Clin Res Hepatol Gastroenterol. 2014 Apr;38(2):172-80.

Sohn KJ1, Jang H, Campan M, Weisenberger DJ, Dickhout J, Wang YC, Cho RC, Yates Z, Lucock M, Chiang EP, Austin RC, Choi SW, Laird PW, Kim YI. The methylenetetrahydrofolate reductase C677T mutation induces cell-specific changes in genomic DNA methylation and uracil misincorporation: a possible molecular basis for the site-specific cancer risk modification. Int J Cancer. 2009 May 1;124(9):1999-2005.

Wang LJ1, Lee SY2, Chen SL3, Chang YH4, Chen PS5, Huang SY6, Tzeng NS6, Chen KC5, Lee IH5, Wang TY5, Yang YK5, Lu RB7.  A potential interaction between COMT and MTHFR genetic variants in Han Chinese patients with bipolar II disorder. Sci Rep. 2015 Mar 6;5:8813.

Schmechel DE1, Edwards CL. Fibromyalgia, mood disorders, and intense creative energy: A1AT polymorphisms are not always silent. Neurotoxicology. 2012 Dec;33(6):1454-72.

Gilbody S1, Lewis S, Lightfoot T. Methylenetetrahydrofolate reductase (MTHFR) genetic polymorphisms and psychiatric disorders: a HuGE review. Am J Epidemiol. 2007 Jan 1;165(1):1-13. Epub 2006 Oct 30.

Qin X1, Li Y, Yuan H, Xie D, Tang G, Wang B, Wang X, Xu X, Xu X, Hou F. Relationship of MTHFR Gene 677C→T Polymorphism, Homocysteine, and Estimated Glomerular Filtration Rate Levels With the Risk of New-Onset Diabetes. Medicine (Baltimore). 2015 Feb;94(7):e563.

*Please keep in mind that any and all supplements—nutrients, herbs, enzymes, or other—should be used with caution. My recommendation is that you seek the care of a naturopathic doctor (with a doctorate degree from a federally-accredited program) and that you have a primary care physician or practitioner whom you can contact to help you with individual dosing and protocols. If you ever experience negative symptoms after taking a product, stop taking it immediately and contact your doctor right away.

About Dr. Doni

DR. DONIELLE (DONI) WILSON N.D., is a naturopathic doctor, certified professional midwife, and certified nutrition specialist with nearly 20 years in professional practice. A graduate of Bastyr University, she is the author of widely-acclaimed book The Stress Remedy: Master Your Body’s Synergy & Optimize Your Health. In that book, she redefines “stress” to include toxins, food sensitivities, and imbalanced blood sugar levels, and offers expert guidance on how to reclaim optimal health. She is a sought-after speaker in the media, and at both public and professional events. Dr. Doni is also the creator of The Stress Remedy 7-Day and 14-Day programs, which support diet change, sleep, exercise and stress reduction. She hosts the podcast Empowering Wellness Naturally and writes a weekly blog at DoctorDoni.com.

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 Lyme Solution: My Comments

 Approx. 3:45 Min

Dr. Ingels, author of The Lyme Solution

In this video, Dr. Ingels (ND) presents his firsthand experience with LD.  He had many symptoms and even the “classic” bullseye rash.  LD took a toll on his job, relationships and overall health.  He initially used antibiotics over 8-9 months and felt worse.  He says conventional medicine failed him and that he believes in the body’s innate capacity to heal.  “The Lyme Solution” is a 5-part plan:  • fix your digestion and heal your gut • teach you to eat food that nourishes your body and reduces inflammation • treat your infection naturally • remove toxins that affect your immune system • get the best sleep and exercise If you’ve been feeling any combination of these symptoms and you haven’t discovered why you feel this way, then it’s time to find out if it’s Lyme disease. Find out now at his website at http://www.DarinIngelsND.com

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**Comment**

Conventional medicine didn’t fail him – it just wasn’t enough and rarely is.  In response to feeling worse before better that’s how this disease rolls.  Syphilis is similar in this regard.  It’s called a herxheimer reaction.  When you take antimicrobials like antibiotics, your body experiences an autoimmune type response when it finally identifies dead pathogens floating around in your blood stream.  The immune system all of a sudden understands who the bad guys are.  The body’s reaction of inflammation and pain are the outcome of successfully killing pathogens.

Experience has shown me that people often do not give credit to antibiotics.  He admits he took them for 8-9 months effectively reducing pathogens.  The unfortunate truth about Lyme/MSIDS treatment is you are going to feel worse before you feel better.  The herxheimer reaction is very real:  https://madisonarealymesupportgroup.com/2015/08/15/herxheimer-die-off-reaction-explained/.  LLMD’s all admit that one of the challenges is in balancing killing with the ability to detox, thereby reducing the herx as much as possible.

This complex disease will sift you like wheat and take you to some very low places.  It is unlike anything you’ve ever dealt with before.  I felt like death on a stick for over 4 years of treatment using antibiotics, blood ozone with UV light, IV vitamins, hormones, herbs, detox treatments, probiotics & supplements, and more I’ve probably forgotten.  But antibiotics WORKED!  At times they worked too well and the herxes were surreal.  But, my husband and I are living examples that taking oral antibiotics for years can work.  We are off all treatment but a maintenance dose of herbs to keep things at bay.

One of the most difficult aspects of this journey is people can not believe how badly they feel, how poorly doctors are educated, necessitating their own advocacy, and how long it takes to recover.  In my experience it’s also quite common to need numerous doctors.  Lyme/MSIDS can affect every organ in your body and wreak unbelievable havoc.  Doctors typically have their specialities or “hobby horses” they know well.  Lyme/MSIDS patients often “out grow” their own doctors and need help from other sources whether it be diet/nutrition, psych help, heart issues, bone/joint issues, dermatology, pain relief, and on and on.  I know patients that see 3-4 different medical professionals for very real issues.  Don’t be afraid to seek out help from other sources.

Please notice Ingel’s treatment took 3 years.  His approach is NOT a magic bullet. Nor is it curative in that it eradicates all pathogens (at least regarding Bb).  Treatment takes YEARS and there are many facets to successful treatment but never underestimate the killing prong of treatment that antibiotics can accomplish.  Dr. Horowitz, a knowledgable Lyme literate doctor, has gone on record stating herbs alone have about a 70% success rate in his practice.  Some patients have severe psych and cognitive issues.  Would you treat tertiary Syphilis with herbs alone?  Neuro Lyme is no different.

In my experience the folks that do poorly on antibiotics can not detox properly or are using the wrong drugs or wrong dosage.  If they can fix their detox pathways, and get the proper drug and dosage, antibiotics work, if they can’t, they often have to choose something else.  I am thankful there are options.  Never diss something that doesn’t work for you because it will work for someone else.

Another reason for treatment failure is NOT EVERYTHING IS LYME.  There are other coinfections necessitating other drugs, as well as the fact borrelia has 3 forms necessitating antimicrobials that address each form.  There’s a lot of guess work involved in treatment and a lot of experimentation.  One of the reasons I write about the different pathogens is that so you can understand how they work and what it takes to effectively deal with them.  Beyond that complexity there’s the importance of supporting the immune system, obtaining refreshing sleep, detoxing, addressing the gut, psychological/cognitive needs, addressing things like mold and MCAS, and so on to infinity.  Every patient is different requiring different components of individualized treatment.

I don’t want any of you to come away thinking there’s a “magic bullet” to tick borne illness – that this book or one particular treatment is going to “cure” everyone.  If someone claims that they are selling something.  A magic bullet doesn’t exist for everyone.  Period.

I had an extremely negative experience with well-meaning people who attempted to make me feel guilty about taking antibiotics.  It was probably when I was at my lowest and very vulnerable. Mind you, I hadn’t taken antibiotics for my entire adult life so I’m not even a huge fan; however, they were the most effective treatment I’ve used, and were for my husband, as well as many, many patients I’ve dealt with over the years.  Again, we used many other adjunctive therapies as well.

Bottom line:  Give credit where credit’s due.  Antibiotics work.  Don’t get a “mightier than thou” attitude & diss treatments you don’t like or didn’t work for you.  Remain open minded regarding treatment – remembering we are all different.  Don’t be afraid to try numerous things.  Stick with those that work.  When you reach a plateau, work with your practitioner and switch things up and remain open to that one thing that might really make a difference for you.  And mostly, remember that this complex illness is unlike anything you’ve ever treated before and will require savvy, wisdom, knowledge, open-mindedness, patience, and most of all humor.

 

 

 

 

 

 

Mushroom Extract Shows Promise For LD

http://www.rheaheraldnews.com/online_features/health_and_wellness/article_f766b28f-313c-57f4-81e8-79c29707a6ae.html  North American Precis Syndicate Mar 26, 2018 

Unique Mushroom Extract AHCC® Shows Promise For Lyme Disease

(NAPSI)—Once almost unheard of, Lyme disease is now a household word. The U.S. Centers for Disease Control and Prevention estimates there are 20,000 new cases a year, and 10 percent of Americans say they know someone with chronic Lyme disease.

Yet the illness is tricky to diagnose. In the early phases, Lyme disease causes symptoms that can easily be mistaken for a case of the flu. And while some people see a distinctive bull’s-eye−shaped rash, not everyone does, and the rash doesn’t always look the same. As a result, it can take weeks or even months to get a correct diagnosis.

Worse yet, as time elapses, the bacterium that causes the disease becomes much harder to eradicate—making it more difficult to treat it effectively. Fortunately, a new pilot study shows that AHCC, a proprietary medicinal mushroom extract developed in Japan, can help alleviate the symptoms of both early and chronic Lyme disease.

Lyme disease: A hidden time bomb

Spread by black-legged ticks, Lyme disease initially causes symptoms such as rash, headaches, fatigue, fever, muscle aches, and joint pain. Timely treatment with antibiotics can be effective, but if the disease is not caught and treated early, more serious symptoms such as short-term memory loss and heart palpitations can emerge, as the bacterium spreads to the brain and heart.

Although early-detected Lyme disease can be treated with antibiotics lasting 14 to 21 days, untreated chronic Lyme disease can continue for weeks, months, or even years after the tick bite. Those who have reached the chronic stage of Lyme disease run the risk of symptoms worsening and becoming long-term—causing emotional and physical stress.

AHCC: a potent immune system modulator

AHCC is an extract of the mycelia (root systems) of medicinal mushrooms and the best-selling immune supplement in Japan. It has been shown to modulate the body’s immune system in more than 20 human clinical studies and is used in more than 1,000 health care facilities around the world.

Rather than being directly anti-bacterial, AHCC increases the numbers and/or activity of several kinds of immune cells such as natural killer cells, T cells, and dendritic cells, as well as cytokines, the chemical messengers of the immune system.

Thanks to this ability to dial up immune response, AHCC has been shown to help prevent or treat a variety of bacterial and viral diseases such as HPV and hepatitis C in humans, and MRSA, influenza, and West Nile in animals. That impressive track record inspired a group of scientists to study how taking AHCC would affect Lyme disease patients.

Lead researcher says study results are “a truly exciting finding”

The study, conducted at The Salerno Center for Complementary Medicine in New York by Dr. John Salerno, enrolled 12 patients with a definitive diagnosis of early or chronic Lyme disease.

The participants took three grams of AHCC per day for eight weeks. At the beginning of the study, after four weeks, and again after eight weeks, Salerno and his associates measured symptoms such as rash, flulike symptoms, lymph node swelling, neck stiffness, and issues with the eyes, joints, and muscles, as well as neurological and cardiovascular symptoms. In addition, they looked for evidence of the bacterium and examined markers of immune activity.

After eight weeks, AHCC had improved the following symptoms: flulike symptoms; eye, joint, and muscle problems; and neurological and cardiovascular issues. Of the three patients who tested positive for IgM antibodies (produced by the body at the beginning of a Lyme disease infection) at the beginning of the study, none still had the antibodies at the conclusion. Of particular note, AHCC also significantly decreased inflammation.

“Inflammation is what makes Lyme disease so debilitating,” Salerno commented. “The fact that AHCC could reduce inflammation and improve Lyme symptoms is a truly exciting finding.”

AHCC may offer protection against Lyme disease infection

It is possible that taking AHCC proactively could prevent Lyme disease infection in the first place. A weak immune system makes the body more vulnerable to any kind of infection, whether from a virus, parasite, or bacterium. The stronger your immune system, the more likely it is to either prevent infection in the first place or clear an established infection more quickly.

In the case of Lyme disease, giving the immune system an assist in the form of more immune cells—and more active immune cells—could mean the difference between the infection being eliminated by the body in the early stages or developing into chronic Lyme disease, with its more serious symptoms. And as the new study demonstrated, even for those with chronic Lyme, AHCC can help mitigate debilitating symptoms through reducing inflammation, offering new hope for those who often feel hopeless.

How AHCC works:  http://ahccresearch.com/how-ahcc-works.html

For more information about AHCC or this study, visit www.ahccresearch.org.

On the Net:North American Precis Syndicate, Inc.(NAPSI)

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Comment:  Inflammation is a killer.  Anything you can do to lower that will help you.  Many things are available including DMSO & MSM:  https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/  These, cheap, effective, and safe substances are available over the counter and help with pain, inflammation, detoxing, chelating, and more.

 

 

 

 

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/