I’m so sorry to admit that I’ve seriously neglected this lovely lil blog of mine…but for a good reason. Let me explain.
Last year in June I was diagnosed with chronic late stage neurological lyme disease. At that time I’d been suffering for years with persistent symptoms since age 4. It started with childhood asthma, allergies, headaches, migraines with nausea and auras, IBS, and chronic fatigue. Later it progressed to severe brain fog, (like forgetting which side of the faucet is hot or cold, and finding myself in a room and not realizing how i got there…), stuttering, disorientation, hallucinations,, panic, rage, mood swings/irritability and general delirium, along with physically disabling symptoms like severe body wide musculskeletal pain, seizures, vasovagal attacks, tachycardia, arrhythmia, dizzy spells, fainting, loss of balance, severe chronic nausea, bouts of vomiting, shortness of breath, chest pain, profuse sweating, shaking chills, swollen painful lymph nodes, irregular body temperature regulation, trouble with vision and hearing, twitches, fasciculations, tremors, low grade fevers, constant exhaustion that feels as if the air around me is a constant weight of 1,000 bricks pushing down against my body, I could go on and on with my close to 200 symptoms. In recent years I’ve developed/been diagnosed with a chronic form of leukopenia (abnormally low white blood cell count) which makes it difficult for my body to fight off infections, bacteria and other harmful stuff…POTS (a severe condition called postural orthostatic tachycardia syndrome), hypothyroidism, chronic fatigue fatigue syndrome, adenomyosis (type of endometreosis), multiple chemical sensitivity, multiple food allergies, ovarian cysts, numerous infections such as chronic UTI’s, liver and kidney infections, low natural killer cells and more. I’m now intolerant of heat, alcohol, makeup, lotions, shampoos, etc. and hypersensitive to light, sounds and especially smells (MCS). Anything and everything seems to send me into a flare-up these days. I should really just live in a bubble lol. I also lost 25 lbs rapidly and despite pushing myself to eat through the pain I dropped down to about 85 lbs at my sickest (I’m 5’5″, so no bueno). Being so underweight created a whole slew of other serious health problems as well.
It took literally millions of dollars on different specialists and extensive testing, and decades went by before I got the correct diagnoses, the ones that explained it all and connected the dots (dots being symptoms and also disorders/syndromes/conditions). I thought that was it when I was diagnosed with late-stage chronic neurological lyme, as well as HH6 virus, and an acute form of chronic pneumonia. I really had no clue what I was in for and that there was more to it than lyme. When my LLMD told me I’d have a long, tough road ahead of me, I had no idea just how true that was.
6+ months of loads of antibiotics and a PICC line, and I had gotten so sick that most days I was completely bedbound. I could barely walk or talk, I would lay in bed in agonizing pain, none of the prescription pain meds would be of relief, and my herbal meds were just not enough. At times I was so weak I needed to be fed. I was losing the little bit of myself was left, including my hope. In November I took a break from antibiotics since it was destroying my digestive system and did 5 months of low level laser therapy and detoxing, which helped some symptoms but others are now worse. I was getting so bad that I couldn’t get any sleep for weeks and I ended up in the ER with a mass in my large intestines.
I was so weak and riddled with pain, but then the universe intervened and my Dr. suggested a mold test for our house. Turns out we were living in a house which in my dr.s words were “unliveable conditions” due to extremely high infestations of toxic mold, including black mold (all the mold was invisible.) Once the mold toxins (mycotoxins) colonize in the body it becomes a multisystemic neuroimmune disease and never ending war. For the unlucky people like me who don’t have the necessary antibodies in their immune systems to fight off the mycotoxins, even a brief exposure to indoor mold can lead to mycotoxicosis which is full blown systemic disease, where the mycotoxins invade and attack every single living cell and organ in the mold exposed victim. Mycotoxicosis is fatal if left untreated, or if the treatment period begins too late and the mycotoxins have already destroyed organs, or crated cancerous tumors. We now know I have been battling this dreadful disease for years. My mycotoxin test came back positive even after 4 1/2 months of moving from the moldy house. I was told this means the levels of mycotoxins in my body were really high since people with mold illness generally have to “provoke” the mycotoxins to be released from fat cells in the body. This is often done with sauna and heat detoxing, and since I’ve been so sick I sweat almost constantly which sucks but it’s a natural detox. Unfortunately I will always get very sick from mold, but with A LOT of intensive treatment, detoxing and time I should get better, and many of my mycotoxicosis symptoms should go away.
Long term exposure to toxic mold damages the brain and leaves behind permanent complications after even after years of treatment. Unfortunately, I lived in the “moldy house” for over 5 years, and we suspect most of the previous houses I lived in had mold due to my progressive mycotoxicosis symptoms throughout my life. My fibromyalgia is from the mold exposure I’ve been told, and a lot of people with fibro actually have mycotoxicosis. My father bravely battled many forms of cancer before he finally died from brain cancer. I believe his death could’ve been mold related, since mycotoxicosis commonly leads to brain lesions and tumors, as well as cancer (the most common mycotoxins are aflatoxins; highly carcinogenic toxins, and trichothecenes; dangerous neurotoxins which are the most fatal of all the mycotoxins)
It’s estimated that 500,000 people in the U.S. die every year from mycotoxicosis, and it’s likely to be many more since it goes so undiagnosed. Many dr.’s don’t know to test for mycotoxins, and may even go as far as to say mold can’t make you sick! The fact is mold can make people very ill and myctoxicosis takes lives with organ failure, cancer, SIDS (sudden infant death syndrome), anaphylaxis, and more. I thank God and the Universe because I honestly don’t know if I’d be alive today if I’d stayed in that house the way my body was going, my organs were set to fail. As of now there is no telling the extent of the damage to my brain, I have to wait to get brain scan and lots of other tests. I still have progressing and emerging symptoms, and have been wheelchair bound for the past month. I had to get a port implanted in my chest for my regular IV infusions. There is no cure for mycotoxicosis, and I know I have a long, long way to go and it will only get harder from the toxin die-off as they slowly up the dosages of my meds and infusions, but I am determined to win this. Now that I finally found the missing piece of my chronic illness puzzle, I have nothing but gratitude and a new sense of hope. My fiancé who lived with me for about a year also got very sick from the mold but not to my degree, fortunately. It’s so very hard to watch him suffer in some of the ways I do. After months of research we have found an environmental illness treatment center out of state which has a high success rate for mycotoxicosis. If all goes according to plan, we should be leaving in june to stay for a month for intensive treatment.
I will be honest, so many times I lose hope, but I know that there is a reason for me to go through this and giving up is just not an option. Being chronically ill is tough, but I am tougher! ❤
What Is Mold Illness? (Mycotoxicosis)
Mold Illness: “Mold Illness is not an allergy. It is an inflammation within the body which is caused by an immune system that has gone haywire. The term “mold illness” is a subcategory of biotoxin illness called Chronic Inflammatory Response Syndrome (CIRS). Some individuals have a genetic susceptibility to develop mold illness based on their immune response genes (HLA–DR). The genetics are clear: occurrence of specific HLA types are found in about 25% of the population.”
Lyme Disease
Lyme has surpassed AIDS as the fastest growing infectious disease in the U.S. right now. Lyme is relatively easy to treat if caught very early, however once it’s progressed to it’s late stages becomes chronic, debilitating and difficult to treat.
“It is caused by a type of bacterium called a spirochete. An infected tick can transmit the spirochetes to the humans and animals it bites. There is some debate to whether other bugs can transmit it, or if it is sexually transmitted. It is however transmitted in utero. It is a multi systemic inflammatory infection. If left untreated it will travel from your skin, through the bloodstream, joints, organs, and will establish itself in various body tissues, and can cause a number of symptoms including neuropsychiatric manifestations.”
Meanwhile, until I leave for treatment I have a healthy, easy and thoroughly enjoyable treat like cookie dough to turn to keep my spirits up 😉
Grain Free Cookie Dough
Vegan, Gluten-Free, Grain-Free, Refined Sugar-Free, Soy-Free
{adapted from The Live In Kitchen}
yield: 1 serving | prep time: 5 mins | total time: 5 mins
Ingredients:
6 tbsp almond meal/flour
2 tbsp virgin unrefined coconut oil, melted or softened
2 tbsp coconut nectar, or maple syrup
1/2 tsp pure vanilla extract
dash of salt, to taste
vegan chocolate chips or carob chips, to taste
Instructions:
In a small bowl mix together coconut oil, sweetener, and vanilla.
Add flour and salt until well combined, folding in chips last.
Chill for best results…or scarf down immediately. Enjoy!
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