Step 9- Setbacks and relapses

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.

Plan ideas

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:)

God Bless:)

* Quotes or information taken from Williams Rawls book, Unlocking Lyme.

Step 7- Dealing with biofilm aka slime

Oh my gosh do I hate biofilm!

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 overcome biofilm?

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.

Protein-digesting enzymes.

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:)

God Bless:)

*Quotes or information taken from the book Unlocking Lyme by William Rawls M.D.

Step 6- Suppress stealth microbes (not just Borrelia)*

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*

Primary

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.

Secondary

Cordyceps: 1-3 grams (1000-3000mg); 2-3 times daily

Reishi: 1000-2000mg, 2-3 times a day.

Eleuthero: 50-200mg 2x a day.

Supportive Supplements

NAC

Alpha Lipoic acid

Vitamin C

CoQ10

Vitamin D

Resveratrol from Japanese Knotweed

French Maritime Pine Bark

Hawthorn

Milk Thistle

Omega 3

* 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.

God Bless:)

Step 5- Neurological Restoration

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:)

God Bless:)

*Quotes from the book Unlocking Lyme by William Rawls, MD

The monster inside of me- documentary teaser

It’s hard to watch this without feeling the pain of their battles. As I’ve relapsed in September and had seizures or tendencies to fall into one almost hourly, I know how nasty it is. I’m slowly coming out of it, but I’m still in lots of pain, and the cold, gray weather does not help.

I have to focus on one step at the time and keep moving forward. Is it sinister what’s happening to people suffering from this disease? Yes. Is this the only disease hurting others? No. This one, along with a few others are hard to diagnose, understand, and eliminate. So far. We hope the research will reveal a cure and the government will allow it.

Have a good day today and hope for a healthy tomorrow:)

God Bless:)

It’s been a while since we talked

D516A709-B2B0-4A0F-8052-D12A5AB364E9What a great summer this one was for us:) The apartment construction work is almost done. I had the most wonderful and unexpected visit for Easter from two of my brothers: Sergiu came from Germany and Flesh came from Romania. IMG_0666They took me completely by surprise:) We had a great time showing them Seattle, among other things and after they left and the weather warmed up, Chet and I spent many hours cycling on bike trails with my in-laws:) IMG_8327I also took lots of macro photos, a hobby of mine, and you can see one such photos at the very top (honey bee on a clover:)

I’m getting stronger every day. I have changed my Lyme tincture treatment to a new product and so far I think it helped me the most (or I’ve had lots of help from previous treatments and this one sort of sealed it). It’s a new product I found on Amazon called Holistic Tincture 7, made in Germany. It’s a 13 Herb tincture (Japanese Knotwood herbage, Teasel root, Cats Claw flower, Coriander herbage, Garlic, Hawthorn leave, Sarsaparilla root, Devil’s Claw root, Boneset leave, Astragalus root, Olive Leaves, Panax Ginseng root, Ginkgo leave) specifically design for those suffering from Lyme. Currently unavailable on Amazon as of today, but you can go directly on their website at http://www.biotraxx.eu to order. Heads up their info is in german (Amazon has an English version), and you need to take 20 drops three times a day for 6 months. One bottle lasts about 2.5 weeks. IMG_0265.jpeg

It really helped me so I hope it does the same for you:) (The cost is around $28 per bottle plus shipping $7).

This year we’ve celebrated our 26th Wedding anniversary:)B26CB92F-1A70-4DC3-9F93-62BD8A5CC31E

I’m grateful and I’m looking forward to the wonderful things to come in this life:) So keep on fighting for those ones not yet on the other side because there’s hope:)

Here are a few more pictures I like sharing with you:)

Have a blessed day and talk to you soon:)

It’s not that we’re dead, it’s that we barely feel alive.

This post is dedicated to one amazing young lady, you know who you are:)

The pain within is masked by how well we look on the outside. If only the world knew how much suffering is enveloped within each cell, each joint, each muscle and each neurological signal hidden in the matrix of our bodies. If only our friends knew how much we hoped to be part of what once was, if only the world would understand how loud they really are and how much that seems to bother us, suddenly. At one point we were part of the busy, loud and aggressive world but now we hide in suffering beds, feeling every surface of our tissues and wondering “what’s going on?” We’re silent about our suffering because, at times, we feel like we’re losing our minds, something truly terrifying. We can no longer comprehend what we’re reading and when you want to talk to us, we stare with a smile on our face trying to grasp the words that no longer make sense in our mind. Our bones hurt,  our identity and value hurt alongside as well.

We used to be normal. God, what happened?

These are the inner cries of those suffering from any autoimmune issues, such as Lyme disease, Chronic Lyme with multiple co-infections, Cancer, Fibromyalgia, Chronic fatigue syndrome, ME, Lupus, and many more. These are some of the unspoken words and emotions, fears and concerns lingering within.

But, on the other side of these emotions and fears (at one point in the past I felt them all and then some), stand those of us whom, with God’s help, are slowly coming out of such a dark road. We’re here to let you know that you’re not alone, not even close to it and THERE IS A LIGHT AT THE END OF THIS AWFUL TUNNEL. I’m starting to re-live my life, even better than before because I know now how valuable life truly is, how important people are but ultimately how important I also am. You are just as important:) I have boundaries, I keep toxicity at bay, I smile to the things I used to ignore and I ignore the things I should’ve deemed unimportant a long time ago.

Cheer on dear one, this too shall pass, and one day you’ll be back among your friends, most likely some new ones, and you’ll build new memories and you’ll laugh again full of life and most impotantly- full of health.

Thank you, God, for each day and God Bless:)

To the ride ahead and not behind I say “hello” with a smile on my face:)