For those of you that haven’t heard the news yet, we sold that retched condo in July and have been dancing for joy ever since! The house we moved into is three times and a half bigger than our condo, and now every member of our family has their own claimed territory, with their own laws of the land:) Yes, we’ve remained together, for which I’m truly thankful.
We’ve expended our happiness and with it came a pleasant side-effect- reduced seizure episodes- proving to me once again what a killer stress really is. Neurologically I may never be what I used to be, I’ve come to accept that, yet the story does not end here. As long as I have breath in me I’ll always fight. This whole year has been closer to my communistic up bringing than I thought possible in America. I pray for America, I pray for us, all.
What have I been up to lately? Why the silence? The rhythm of my life, which was broken at one point, is finding its way back, slowly, surely, not as precisely, more flawed, more graceful, more forgiving. God, not religion, has been with me the whole way, showing love in unique and unexpected moments as He often tends to do with humanity. Family and friends too. I was a sturdy lego building at one point only to be unexpectedly broken into small pieces. It takes time to rebuild and when the memory falters what gets built back looks so very different from the original. Not worse. Not better. Different. Better in some ways not so in others. My health, as of today, is not complete. My health, as of today, is better than yesterday. Yet, Lego pieces are still missing, links that I need desperately to complete the new building, links I still keep a look out for, but then I get the sense that so are you. You too are incomplete, you’re searching for some missing pieces. That’s good. Searching keeps us alive, searching keeps us ticking. Searching gives us hope and hope builds towers. I know so many of you may be affected one way or another by 2020’s failures, for which I find myself ill equipped to comment, yet, beyond dark heavy clouds a sun always shines. Scientific fact. Hold on to that and keep moving forward one step at the time.
Imagine me sighing now, because that’s what I’m doing and I haven’t begun writing this blog yet.
Thank God for artist like Mandisa, for friends and loved ones, for great hubbies and wives, for sisters, parents, brothers, for friends and for those wonderful people who do research work so we can find The Cure. We must find the cure! There are only so many relapses we can walk through with our heads high and hope filled hearts. But we do it! Ultimately thank God for life, shitty like it is at times is better than not having it.
Recovery from a chronic illness is an up-and-down process.* No need to beat around the bushes about this, those who suffer know this truth.
Just when you think everything is turning around, a set back kicks you in the …well just about everywhere. You’re on your back, in bed, wrapped in the blanket of pain and now what? Why God? Why again? Did I eat the wrong thing? Did I do too much? Took the wrong medication? And you trace back every single step with a fine brush and can’t seem to find anything. Or maybe you do.
My #1 flaw. With increase of energy my thirst for life returns and I end up wanting to do all those things I dreamed of doing while imprisoned in bed, so I do them! And for brief periods of time I feel like I belong in the vast community of humans where I too look and behave normal, where pain and disease are not the subject of the day, where I can be stupid and silly and alive. That’s when I collected memories. That’s what I call it. These memories are worth every single stab of pain I feel later on, because Lyme punishes us like that. If you see me out there in the world and if I’m visiting you or you’re visiting me, I’m living and loving it, even if I know Lyme’s punishments will come later on.
Fortunately, with time, these setbacks gradually become less common and less intense. * True. At least it is for me.
System disruptors that cause setbacks: poor nourishment, toxins, emotional stress, physical stress, oxidative stress (increase in inflammation), radiation (from computers and cell phones), microbiome imbalance (new bite, flue, cold, Herxheimer reaction, flu vaccine), bacterial and viral fare-ups (Epstein-Barr virus reactivation, other herpes- type viruses, Borrelia, Mycoplasma etc), drug reactions, inadequate sleep, and/or allergic reactions to herbs or drugs, or even food, travel or stressful events, or if you’re like me I enter complacency- do more and eat more sugar. The weather changes also affect us, less sun and more cold, rainy, humid days bring the flare-up fast. Cancer, menopause and other such unexpected illnesses, it can do a number on the body.
General Guidelines: If you can get sun or move to a sunny area, do it. REST!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Did I make that clear? I hope so:) Lots of liquids and when I say liquids I mean water, tea (ginger) and natural non-sugary drinks. Vitamin C, turmeric and boswellia to reduce inflammation, Enzymes to help you break down the food you eat. The best one is just eating pineapple or take Bromelain, Omega-3 fatty acids, heat, CBD oil (I take that quite a bit during flare-ups, it keeps me sane), herbal supplements, go outside and breath fresh air and walk barefoot on the dirt, meditate, make your world smaller, try to exercise-Yoga is good- (now this is one of those catch 22 issues, flare-ups brings along severe fatigue symptoms and we only have a certain small amount of energy every day and many times we have to choose between cooking or exercising) but endorphins suppress pain and enhance immune function.
And the hardest one of all, figure out how to reduce fear. Yeah, easier said than done, right?
How do I do it? Well, I cry first and I get angry then I start formulating a plan. I’ll give you some ideas, but if you have other ones please share them and I’ll add them here.
What do I want to do this summer? Realistic goals only. Everyone can make their way outside and lay on a piece of grass and soak the sun, for example. So look forward to those activities.
What new recipes do I want to make? (Most days I only want to eat sugar, so this one is tough:).
What friends do I want to see once I feel better? Assuming they’re still talking to me;)
How can I be part of my children’s lives more?
What hobby brings me peace? I should start that hobby then. So on.
In conclusion, please rest, surround yourself with good and positive encouragement material via books, shows, friends, activities and look forward for the happy spring and summer seasons. Keep fighting because a cure will be found:)
I hope some of this information has been helpful to you:)
* Quotes or information taken from Williams Rawls book, Unlocking Lyme.
The adrenals, thyroid and menopause mess our hormones radically. Pregnancy, for some reason, improves the wellbeing of the mother but after delivery there’s another story.
Personally I had to reboot the adrenals, and pre-menopause began in 2017 during my mercury fillings removal procedures. Another can of worms opened as pre-menopause settled in and later on in 2019, menopause.
“Adrenals sit on top of the kidneys, one for each kidney. The middle portion of the gland secrets the hormone epinephrine, better knows as adrenaline. The outer portion of the adrenal gland secrets cortisol. These two stress hormones define how you will react to stress of any sort. “*
I was operating in the sympathetic response only, the fight and flight response, unable to relax any longer and let the body heal. This was not intentionally done. I was severely fatigued all the time without the ability to rest, as I’ve previously mentioned. This is very typical in Lyme patients. I’m being tested in March for Addison’s disease since the latest blood test looking at the levels of cortisol in the morning came back low.
Hormones influence our emotions, and depression, anxiety, moodiness and other similar emotions are the results. My adrenals are fatigued and among Lyme patients this is a prominent finding.
This area is so in- depth I would only bore you to death talking about it and there are lots of youtube videos which do a better job at it than I would, so I’ll leave it at that.
How can you help your hormones and stress level?
Slow down your activities and try to slow down your mind, it’s very difficult I know because I’m still trying. Meditate, do yoga, watch non-violent shows and movies, choose non-violent subjects in your daily communications, walk barefoot on the grass and dirt outside, stay in the sun as much as possible.
Ashwagandha, Licorice and Asian Ginseng (panax ginseng) are good herbs to take. Avoid Licorice if you have insomnia and high blood pressure.
If you have a thyroid disfunction there are prescription drugs the doctor will prescribe for you. Ashwagandha, iodine or L-tyrosine are a natural route for supporting the Thyroid gland.
Menopause, a natural tornado as I call it, brings along with it too many imbalances and for those fighting Lyme, chronic Lyme, and other serious illnesses and diseases it’s a very unpleasant layer of crap on top of all the other layers of crap they have to deal with already. Ashwagandha helps to reduce the hot flashes, the herb VITEX restores progesterone secretion and normalizes the menstrual cycle and abstinence from sugar helps reduce the hot flashes (something nearly impossible to do with all the cravings that come along with menopause).
I hope some of this info can help someone, and chin up, the cure is coming.
Biofilms are colonies of microbes. They hide safely inside a protective polysaccharide shell which protects the organisms inside from starvation, drying out, the immune system, and antibiotics. Inside they’re free to mingle and exchange information.* As M.D. William Rawls put it in his book Unlocking Lyme; “imagine a crowded dance floor with bodies squeezed together forming a uniform mass swaying to the rhythm of the music.”
If immune function is compromised, like in chronic immune dysfunction, biofilm can form on surfaces of the body. It’s very hard to rid your body of these biofilms and when the bacteria, viruses, protozoa and fungi finds the environment safe they come out (multiplied by now) and goes wild in the body causing the known relapses and/or other complications.
Common biofilm illnesses include bacterial vaginosis, chronic UTI’s, chronic sinusitis, chronic bronchitis, middle ear infections in children, heart valve infections. “Lyme disease is not primarily a biofilm disease.” According to M.D. William Rawls. However, symptoms of Lyme disease are caused by the bacteria manipulating the immune system to generate inflammation, and it can allow the biofilm generated by other bacteria to flourish. Ex: Dizziness common in Lyme disease may be related to biofilm formation with calcium deposits in the inner ear probably caused by other baacteria.*
How can you overcomebiofilm?
A strong immune system will do it:)
Herbal therapy with antimicrobial and immune-enhancing properties (garlic, zinc, elderberry, echinacea, mushrooms, sage, artemisia, calendula, capsicum etc). Personally I respond really well to artemisia.
Essential oils like eucalyptus and thyme.
Monolaurin- comes from coconut fat.
NAC (N-acetyl cysteine.
EDTA, a chelating agent.
Oxygen and nitric oxide. *
More research is needed and being done on biofilm, but one think research has shown is the ineffectiveness of antibiotic treatment against biofilms.
On a personal note, I believe based on the research I did, that lyme bacteria can hide for years in these biofilm colonies, multiply and get stronger and a compromised immune system due to trauma, accident or serious illness can trigger them and set them free to cause extensive damage in the body. For me personally was a combination of my little brother Fanu passing away and third pregnancy. I absolutely love Alex, my third and don’t regret anything but I will forever miss my little brother, Fanu.
Hope some of this information has been of help to you today and keep fighting, a cure may be around the corner:)
*Quotes or information taken from the book Unlocking Lyme by William Rawls M.D.
Lyme is a cruel disease. The co-infections that come along with it are horrendous and most often worse than Borrelia Burgdorferi alone.
Co-infections I suffer from are: Babesia Duncani, Bartonella, Mycoplasma Pneumoniae. In addition there’s Ehrlichia/Anaplasma/Rickettsia (the worst one) and Chlamydia. There are said to be hundreds of Borrelia versions yet undiscovered.
Viruses such as Epstein Barr Virus, Streptozyme (strep infection), MMV6 Herpesvirus have been found in my body. In addition to these there are also CMV or Cytomegalovirus, hepatitis B and C, HSV-1, HSV-2, herpes virus, HHV-6a, HHV-6b, HHV-7, parvovirus B-19, adenovirus are the most commons. There are thousands more, some undiscovered yet. Most people are carriers of some of these viruses but the immune system is stronger and keeps them in check. For Lyme patients these only add to the multi-head-monster-disease and cause serious damage.
In addition intestinal parasites, mold and toxicity and some genetic cellular dysfunctions such as HTGF C677T mutation was positive for me, a critical enzyme required for a metabolic process that repairs DNA. But the list is long in this criteria as well.
There’s also a vitamin deficiency usually present such as Vitamine D, B, and magnesium; these were in my case and can vary for others. Also the HTGF B1 or Human Transforming Growth Factor was high in my case meaning high amount of inflammation present in the body.
By now I had non-epileptic seizure (I learned that later) all the time, paralysis of arms and feet, tingling of extremities, face and lips, among my many other symptoms.
I’ve seen cardiologists, neurologists, urologist and was referred to immunologist, endocrinologist, but due to feeling too weak to stand and too poor I opted out of some.
I had Lyme for years, but I got re-bit and the high amount of trauma/stress at the time (my little brother died, pregnancy #3, school, trip to Europe and work) triggered the monster.
Symptoms of Lyme Disease and Co-infections for me: flu-like symptoms it’s how it began with face pallor, chills, muscle ache, low fever then high fever and malaise. Added along the way: numbness and tingling of upper and lower extremities, face and lips. Constant nausea. Peripheral blindness, air hunger (Babesia), rashes, joints, muscles and bone pain around the clock, dissociation, fog vision, fainting spells, rapid weight loss without activity, hyper-sensitivity to noise and light, hyper-anxiety, irritability, depression, ghost like facial paler, loss of hair/eyelashes and eyebrows, bitter/metallic taste in the mouth, stomach discomforts, swollen lymph nodes, left side pain in the spleen region, shallow breathing, irregular an heavy periods, headaches, confusion, loss of memory especially short memory, speech impairment, swollen eyelids, ovary and bladder pain, chronic UTI’s, Bell’s palsy on the right side of face, non-epileptic episodes, to name a few.
How to treat?
Since there’s no cure for Lyme Disease yet, the treatments are very controversial in the western medical circles and three weeks of antibiotics only helps half of the patients while the other half go on a life long debilitating and severely painful battle.
Advise #1 from me: Fight for your life and don’t allow the doctors to brush you aside as if you’re crazy. Most likely they’re frustrated as well by the lack of knowledge on this subject and most are scared of the CDC, a corrupt and criminal corporation in my opinion, not looking out for patience at all.
Antibiotic treatment may have helped a limited amount of people but science shows the presence of Borrelia in tissues even after treatment.
A holistic systematic approach to healing has proved to help. Tincture protocols like Buhner and Cowden as I mentioned in previous steps seem to help tremendously. Herbs and aromatherapy also do wonders, and are far more affordable than antibiotic IV’s.
Core Herbal Protocol*
Resveratrol from Japanese Knotweed: 200-800 mg, 2-3 time a day.
Andrographis: 200-800mg, 2-3 times a day.
Cat’s Claw: 400-800mg, 2-3 times a day.
Chinese Skullcap: 400-1000mg, 2-3 times a day.
Garlic with stabilized allicin:180-1200mg, 3x daily.
Sarsaparilla: 200-1000mg: 2-3 times a day.
Cordyceps: 1-3 grams (1000-3000mg); 2-3 times daily
Reishi: 1000-2000mg, 2-3 times a day.
Eleuthero: 50-200mg 2x a day.
Alpha Lipoic acid
Resveratrol from Japanese Knotweed
French Maritime Pine Bark
* Treatment info comes from the book Unlocking Lyme by William Rawls, MD. Most of these treatments I take with great results. It’s the relapses that suck.
Gut restorative supplements as well as toxin and mold removal are a must. (See previous Series for more info).
Hope some of this information can help you find some answers and gives you some tools towards getting better.
As I’m writing this series, I realize just how complicated this disease is, and why it’s so hard to treat.
“Beyound collagen, microbes- Lyme and Co-infections- commonly scavenge specialized fats in the brain and nervous system. Myelin, the fat that surrounds and insulates nerves, is a common target for Borrelia and Mycoplasma (which I was diagnosed with along with a few other co-infections). Loss of myelin and other brain fats cause a range of neurological symptoms, from tingling to burning to brain fog and depression (all symptoms I do and have experienced).*
Eggs, are a good source of lecithin and choline, both essential brain nutrients. Omega-3 fatty acids and minerals including zinc, an essential nutrient for brain function.*
Monolaurin, a fatty substance derived from coconut, is known for supressing microbes, including Borrelia.* I took this supplement for one year.
Also certain mushrooms, including lion’s mane and chaga are known for protecting and restoring the brain function. Reichi and Cordyceps mushrooms provide neuro-protective properties.* I take reichi powder in tea and it helps tremendously. Other herbs include ashwagandha and bacopa.
Lavender, rosemary and lemon balm are great essential oils to use.
I had neurotherapy injections done along the spine and in over the adrenal glands for 6 weeks, to help re-boot the parasympathetic response ( rest and digest, during which the body heals ).
The brain fog I experienced was severe and could no longer remember every day words, I skipped the order of words in a sentence, repeated one word over and over and could not remember what it meant, I had a hard time comprehending what others were telling me, if I read I could not comprehend anything and after reading one sentence ten times I gave up, etc. These are just few examples of brain fog. This however diminished almost entirely, right after I pulled my mercury fillings out.
Mold presence in the system, as well as toxins created a bomb gone wild, along with Lyme and its co-infections. Those need to be removed one at the time as not to overwhelm an already fragile body.
Anti-mold diet: avoid sugar, dried fruits, peanuts and make sure you drink plenty of water-about 10 cups a day-. Glutathione and Phosphatidychlorine Iv’s were helping bring the mold out of the body and support the nervous system. Chlorella pills help remove toxins out by binding on the toxic molecule and flushing it out through urine or sweat. Bentonite clay, activated charcoal (I can’t do this one) and infrared sauna.
Meditation and deep breathing helps quite a bit as well as yoga exercises.
Hope this info helps you and I’l be moving on to our next step:)
*Quotes from the book Unlocking Lyme by William Rawls, MD
This step has many routes towards healing, some better than others, some easier than others and some with a far better outcome than others.
It’s not a simple 1.2.3 point presentation answer when it comes to autoimmune health battles since every single body reacts differently to treatment and Lyme Disease brings along the dangerous co-infections which alter the immune balance in various ways. My battle has a neurological angle, yours could have a cardiovascular angle, so on. Since I’m not a doctor I can only share with you my personal experience, nothing more.
Inflammation gone wild is the biggest cause of autoimmune diseases, I believe, and by reducing it or eliminating it, you’ll see a dramatic improvement.
How am I doing it?
Eliminating all dairy products from my diet was an immediate and inexpensive route. “Antioxidants in the blood steam play an important role in reducing the damage effects of inflammation.”*- Blueberries, dark chocolate, pecans, artichokes, strawberries, green tea are some of the foods rich in antioxidants, they have to be pesticide free otherwise you fill up on toxicity. Prostaglandins: One of a number of hormone-like substance that participate in a wide range of body functions such as the contraction and relaxation of smooth muscles (ex: stomach, intestines, urinary bladder, uterus or the walls of arteries and veins, respiratory, urinary and reproductive systems), the dilation(widening) and construction (tightening) of blood vessels, control of blood pressure, and modulation of inflammation. -definition found by MedicineNet with personal notes added- “Diet rich in vegetables and omega-3 fatty acids (fish, flax, chia seeds) promotes prostaglandins that diminish the inflammatory response.”*
“Non-steroidal anti-inflammatory drugs such as Ibuprofin (Advil) and naproxen, artificially control inflammation by blocking key enzyme, called COX-2, and provide relief from swelling, redness and pain.”*
As for herbs that help reduce inflammation, turmeric which has curcumin (member of the ginger family) as a primary component has potent anti-inflammatory properties. Other herbs with similar properties are Boswellia serrate and devil’s claw.
Protein-digestive enzymes play a role in breaking down inflammatory debris and immune complexes. Like bromelain from pineapple and papain from papaya.
Rebuilding collagen– “The primary tissues affected by inflammation in chronic lyme disease (and I suspect Lupus or other autoimmune diseases) include joints, ligaments, muscles, brain, eyes, skin and heart. What those tissues have in common is collagen -the most abundant protein in the body. It’s what holds you together.”*
Personally, I know the filling of being eaten from within, how every joint hurts 24/7, how tired I get by this pain, how frustrating is to walk, exercise or just move in general and how eager I am for a cure. Because of this battle, I believe, I got adhesive capsulitis also known as frozen shoulder going on now and it hurts like heck.
Diet to help restore collagen. Kale and other deep green leafy vegetables (Yuck! Don’t like them personally), cucumber, salmon, sardines, eggs, celery, olives, bone broth, gelatin (like NeoCell Collagen- that’s what I take).
Restoring immune strength is a must in order to battle and succeed against Lyme Disease or other autoimmune diseases.
I will have to add Vitamin D (a hormone really), C, Magnesium and B’s are very important for proper immune function.
Seems like a lot, right? But don’t loose heart, there’s more to come:) Hope some of this info helps you in your own battles and chin up, we’re here and one day we pray we’ll be pain free.
*Quotes from the book Unlocking Lyme by Williams Rawls, MD.
You got diagnosed, a bit too late and the three weeks Doxycycline antibiotic treatment not only didn’t work but it stirred up a nest of vipers and you’re left with the aftermath. Now you need to find a Lyme specialist outside the western medical realm, unfortunately, and at this point things get complicated, confusing, expensive and down right frustrating.
In the Seattle are where I live there are quite a few Lyme specialist, you only need to Google them. The first one I’ve tried was Dr. Susan Marra. She was expensive but no more expensive than the other specialists, had a certain doom and gloom advise for me about this disease (but in retrospect looking back she was very realistic about the whole process and I didn’t want to accept it) and a little odd but keep in mind she too is fighting Lyme Disease so it can’t be easy for her. Since I couldn’t handle the strong antibiotic treatment she had me on -which was more expensive even with insurance coverage than the natural realm I took later- I left and found another doctor. She saved my life but it took two years of weekly different IV treatments, supplement intake, rife like therapy, and a few other procedures. She works at Holistique Naturopathic Medical Center in Bellevue. It wasn’t cheep. So one way or another you end up paying. The best advise I can give you is to find doctors who specialize on improving and strengthening your immune system because once your own immune system is strong it will do the killing for you.
If you can’t afford a specialist, and most people can’t, there are other alternatives you can do at home.
First you must change your diet: by eliminating dairy products you lower the inflammation in your body, by eliminating sugar, for sure the refined and processed one, you give your immune system a chance to fight back, since sugar is a well known immune inhibitor. Warm water with lemon helps with detox, so does epsom salt. Vitamin D, C and B’s are very important and so is collagen (Lyme feeds on collagen), then potassium and magnesium. If you can, for a certain period of time, do a vegan diet with non-processed foods preferably by cooking your own meals (that can be very hard I get that), but do what you can. Garlic helps greatly, olive oil and oregano pills as well.
If you have more money to spend start tinctures and essential oils. Buhner or Cowden protocols are very helpful and Amazon sells most of their protocols products so its easy to get them.
For the neurological side I love and use daily Neurocalm by Designs for Health, also found on Amazon. This product helps my nervous system to calm down, gives me energy an it does not make me drowsy at all. I can handle being in public better. I’ll stop here although there are thousands more supplements that can help, including parasitical cleanse. (One I must mention is called Holistic Tincture 7 by biotraxx, comes from Germany and you need to do a six month program. One of their bottles only covers 3 weeks so prep in advance by ordering multiple bottles since it takes a week to get to USA, but it really helps me).
Reading books on the subject is essential.
Unlocking Lyme by William Rawls M.D who got infected and began fighting against it. I love this book because it has very condensed medical information, yet easy to read and the how to’s. Healing Lyme by Stephen Harrod Buhner, a book I still need to read but I tried his protocol and it helped and many others can be easily found on Amazon or your local library.
Join Lyme groups on Facebook for moral support but please don’t be mean, the other members are also fighting hard, feel cranky and crappy most days.
I hope the info I’ve shared with you today will guide you so you don’t feel overwhelmed in this tricky and complicated battle. You can do this! One day you’ll be on the healthy side of life:) Have a day void of pain if possible and God Bless:)