Approx. 1:43:00
Dr. Raymond Yingling, N.D., of Madison Laser Therapy speaks to the Madison Area Lyme Support Group about the benefits of class IV laser therapy as well as the realities of pharmaceutical drug-induced vitamin and mineral depletion.
For more information on Class IV lasers: https://madisonarealymesupportgroup.com/2018/02/27/march-2018-support-group-laser-therapy/
https://www.lymedisease.org/lyme-sci-more-mcas/
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.
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.
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.
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:
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:
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/
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.
Published on Mar 15, 2018
Dr. Christine Green, a Lyme-treating physician who serves on the board of LymeDisease.org, recently spoke on the topic of Lyme biofilms and efflux pumps–two factors that can directly affect treatment for Lyme disease.
https://www.lymedisease.org/green-biofilms-efflux-pumps/
In this second talk, Dr. Green explains how biofilms function within our bodies. A biofilm is a jelly-like barrier created by organisms to protect against environmental stress. There are both healthy biofilms and those that contribute towards illness. The National Institutes of Health (NIH) estimates that 80% of all chronic infections are associated with biofilms.
Research shows that Borrelia burgdorferi, the pathogen that causes Lyme disease, also forms biofilm. This helps protect the bacteria from antibiotics. Adding biofilm busters to antimicrobial treatment may be one way to combat chronic Lyme disease.
In addition to biofilm, Borrelia have something called “efflux pumps” that help the bacteria survive in hostile environments. The efflux pumps push out heavy metals and other chemicals, but they can also expel antibiotics before they’ve had a chance to work. Current research is looking at ways to deal with the problem.
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For More: https://madisonarealymesupportgroup.com/2017/08/18/drexel-prof-lyme-persists/
https://madisonarealymesupportgroup.com/2017/10/26/lyme-wars-part-3/
Great article on biofilm & natural biofilm agents: https://thescienceofnutrition.me/2015/03/13/natural-anti-biofilm-agents/ (Includes: garlic, NAC, xylitol, coffee, cranberry, enzymes, chelation, & more)
MSM makes cell walls permeable which is why it helps with detoxification and is an important oral chelator: https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/
