Lyme Rage. Yeah, it’s a thing.

A friend of mine had never heard of “Lyme Rage”.  I’m sure he isn’t the only one. The term “Lyme Rage” is not meant to be a joke, or an excuse. It is a symptom of Lyme Disease, that some, but not all, experience. It is also not the only cognitive or emotional symptom that may arise as a result of a chronic Lyme Disease infection.

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The Powassan Virus.

Some of you may remember a blog post I did 2 years ago, when the news reported cases of  the Powassan virus in the United States. Recently, a few more cases have been reported. A young child in Connecticut, and a man in Massachusetts.  Here are a few things you should know about it.

The Powassan Virus, like Lyme Disease, is spread by ticks. Especially in the N.E. USA, due to a warm winter, ticks are out earlier, and in greater numbers this year.

Cases of Powassan virus have been reported since 1958 from Canada and the Northeastern United States. Approximately 60 cases in total have been confirmed over the past 10 years.

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The Lyme Disease Challenge.

May is Lyme Disease Awareness month. There are more than 300 thousand new cases of Lyme Disease each year in the USA alone. This year, at  least in the Northeast USA, we are already reporting higher numbers of ticks, due to a warmer winter.

Lyme Disease is not confined to the US. It is a worldwide pandemic, that is widely denied by health care providers. Ticks, and other insects that carry Lyme Disease, and other pathogens reside on every continent except Antarctica.

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We Are Here

My back has been aching for 3 days. Woke up this morning, and can’t stand up straight. Pain seems to be my motivation, and this is the result. May is Lyme Disease Awareness Month. Much love to all of the Lyme warriors out there.

We Are Here.

We are not celebrities.
You will not see us suffering on the news.
We are mothers, and fathers, sons and daughters.
We are your neighbors, and your co-workers.
We are veterans, and policemen.
We are teachers, and doctors.
We are your servers, and your chefs.
We are the young, and the old.
We are everyone, and we are everywhere.
Yet, we are invisible.
We are the 300 thousand new cases every year.
We are advocating for our rights.
We are fighting for our lives.
We are searching for a cure.
We are doing this for ourselves.
We are doing this for our families.
We are doing this for you.
We are the survivors, and the warriors.
We have Lyme Disease, and we are here.

Fight Song

The Mayday Project

At long last, I can think…

The truth is, that Lyme Disease sucks. Don’t ever let anyone tell you otherwise. Yeah, you may have a few good days, but you will pay for them with your soul. I have had 4 weeks of bad days, peppered with moments of clear thoughts, and hope, which vanished as quickly as they appeared.

I have not played my games…none of them.

I have not had enough motivation to write anything.

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#Justsmokeit.

Ok, I’m probably going to catch flack for this, but I don’t care. Just read some (probably) fake news about Gov. Christie saying that menstruation is “God’s curse for women”, and they don’t need marijuana for relief. True or not, it irks me because I know idjits who think like this. First of all, not everyone believes in your religion. Secondly, stop trying to push your sexist, beliefs on us. Women had been using natural medicines for thousands of years before your “GOD” was even thought of, for everything from menstrual cramps, and abortion, to tooth pain.

Marijuana is fucking plant, that grows naturally, pretty much anywhere you want it too, just like cacao, sugar cane, and fucking lettuce. The dangers only occur when certain plants are processed, and chemically altered. Marijuana is used in it’s natural state. There is no legitimate reason to prohibit the use of marijuana. I have never seen a study, or modern medical article that proves in any way, shape, or form, that POT is dangerous, to anyone. “Reefer Madness” was propaganda, plain and simple. I have seen however, studies, and papers that can prove that the chemicals in marijuana CAN, and DO provide relief from symptoms, and in some cases cure disease.

Anyway, with all of the marches on Washington, you’d think there would be a (Peaceful) mass protest march for the legalization of Marijuana on the FEDERAL level. Can you imagine the crowds that would show up for that? Medical users, and recreational users alike. Would probably rival or exceed the crowds that protested Vietnam, or anything since. Stop letting the government tax plants to create more income for themselves. We didn’t create their deficits, and we shouldn’t be forced to ingest poisons, and ruin our lives because the Big Pharma lobbyists control them. #Justsmokeit. #Beheard #LegalizeMarijuana

A lifetime of food, and poison. (Juicing Day #7)

For over half a century, I never gave a second thought to the foods I consumed. As a child, my mother fed me, and in my adult years, I have maintained an “if I’m going to die, I am going to die happy, eating what I want”, attitude. I clung on to this way of thinking, until very recently.

Enter chronic illness. I was initially diagnosed with Lyme Disease. I saw many doctors, who threw Doxycycline, and Prozac at me, and then found a Nurse Practitioner who had a different approach. She was the first to talk to me about my diet, and the first to attempt to treat the Lyme Disease aggressively. The very first thing she told me to remove from my diet was sugar.  When she moved away, I was again forced to see a medical doctor in town. Having state insurance, I was limited as to who I could see in town. The new PCP ordered every test, and procedure known to man. Since he did not believe in Chronic Lyme Disease, he looked for another cause of my (many) symptoms. Although he was able to refer me to an orthopedic surgeon for my neck pain, nothing much else was accomplished. Nutrition, and diet were never discussed. His final diagnosis was Fibromyalgia. Another disease with no testing, ambiguous symptoms, and no cure.  This doctor as well, is resigning, and I am set to see a new doctor in June. Right in the middle of trying to be accepted for SSDI, but I digress.

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Juicing, Day #6, & Feeling Springy.

I am sorry for being less than active blogging about this juicing adventure of mine. Honestly, it isn’t a lot of fun, and I have been feeling even weaker than normal. This is to be expected, according to what I have heard, and read. If I had to recommend some diet, I would say just eat better foods. A whole food plant based diet is what I will be choosing. I will still juice, but it will be in addition to foods I can chew. (I really miss eating.)

Yesterday, I had an appointment, and talked to my BH guy about the diet, and other things, like CBD oils, and such. I am now doing some research on this.

My PCP resigned from the office I have been using for years. Creating an anxiety filled couple of days.  I now have to break in a new PCP, and get him up to speed. Unfortunately, I have to wait until June to see him. I hope he is more open minded than the last one..

The weather broke today, and the sun is doing it’s work to warm us up. My daughter, and I took a trip to Pecto for supplies, and being out made me feel better emotionally. We have crocus, daffodils, and tulips beginning to pop out in the sunny spots. Spring is coming, and I am so happy about that.

That’s all for now, I need a nap.

Juicing Day #2.

Well, as you can see, I am posting news from Day 2, on Day 3. This is because, to be honest, I felt like shit yesterday. I woke up tired, hungry, and bitchy.  I didn’t feel awake until about 3 pm. Luckily I had made extra juice on day 1 so that I didn’t have to do anything in the morning. I am not a morning person, even on a good day.

Juicing is a lot of work. You will have to wash, and prepare your fruits & veg for juicing, and clean up afterwards. Unlike the people in the documentaries, you will not have a crew to follow you around, and take care of this. If you have a chronic illness, you will need to use your energy, and time wisely.

Since my energy level was low, I mustered all of it, and made about a day and a half worth of juice.

beets

This one includes beets, and beet greens. I stored the rest in sealed containers in the fridge.

I spent most of this day “hangry”, and in bed.

Dinner for the family was Roast chicken, rice, and spinach. Smelling it cooking, and not eating, was torture. You will want to eat. Your stomach will act like you’re starving. Juicing, day #2: Not fun.

 

Juicing, day 1, a few hours later:

Remember earlier when I was talking about coffee? Well, I just created the juice version…all that is missing, is the coffee. 🙂

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Honestly, it almost tastes like coffee. I have named it “Java Juice”

Here’s the recipe:

8 large strawberries, 4 bananas, One 1-inch sized piece of ginger, 2 oranges peeled, one handful of baby spinach leaves, one golden delicious apple, and 4 beet greens (leaf & stalk)

Makes approx 20 oz.. Enjoy.

*Note: I am not sure I like the way the bananas go through the juicer. I seem to lose a lot of the banana, with not much yield. Going to look into this.

 

Juicing, Day #1.

“Mom! It Tastes like dirt!!”-What my daughter said after tasting my first juice.

Well folks, here it is, the much-anticipated day 1 of juicing. I am not going to mince words, or try to convince you of anything. I am not following anyone’s plan, or diet. I am doing this my way. 10 day juicing cleanse, followed by a whole food, plant-based diet.

My Daughter purchased the Juicer for $49.88. Raw fruits and Veggies, $87.64.

 

Grocery list: Kale, Cukes, Tomatoes, Bananas, Pineapple, Coconut, Celery, Carrots, Ginger, Lemons, Limes, Beets, Cilantro, Parsley, Strawberries, Oranges, Honey, Spinach, Granny Smith, and Red Delicious Apples.

Some of these were organic, some not, we did the best we could, given our selection.

**Wash your fruits & veg.**

The juicer is easy to use, and comes apart easily for cleaning. It also came with a cleaning brush.

Step 1: Set up the juicer, plug it in, put a piece of fruit or veg in, and press down the “Food Pusher”. (Yes that is what they call it in the directions.)

Step 2: Place collection cup under spout………yeah…I had a bit of clean-up to do.(Include in Step 1.) LOL

In my first juice, I used: 1/2 a cuke (European), 1 granny smith apple, 2 nice hand fulls of kale, 1 lemon, two carrots, 2 stalks of celery, a couple of sprigs of parsley, and cilantro. This combination made 20 ounces.

**You should always remove hard seeds, from cherries, peaches and the like, to avoid damage to the juicer, as well as peels from lemons, and oranges, etc to avoid bitterness.**

Placing one of the veggie bags into the pulp collector will make clean-up easier. I recommend cleaning up the juicer right away. Throw a couple of ice cubes in the juice to keep it nice & cool.

My philosophy on diets is, for the most part, that they do not work. Mainly because they often deprive you of key nutrients, and cause cravings which results in “falling off the wagon.”  I know if you tell me I can’t have something, it only makes me want it more. I am not doing this solely to lose weight. I am doing this to regain my health. After all, the doctors have no idea what to do.

I usually have a cup of coffee each morning. I  did this morning as well. This is not in the plan, but a cold turkey caffeine withdrawal is not my idea of fun. I will be weaning myself off of coffee, and moving to green tea.

My first glass of juice was on its way into my system at 12:30pm. The first taste was better than I expected. I am, however, a person who loves fruits and vegetables. Your experience may vary. I am still sipping it. This is not a race.

Based on yield, and time of clean-up, I have decided to prepare two – 20 oz. servings at a time, from now on. To save me from being miserable, I am also including a fruit juice twice a day. That should stave off the sugar craving. Remember, this is MY plan. What works for me, may not work for you.

**Remember to consult your physician before starting any diet.**

I recently had a visit, bloodwork, weight, and BP checked. The only medication I am currently on is for my blood pressure, and I am hoping to discontinue that soon.

It is 2:21pm. I am still sipping my juice, and I’m hungry, but I can always make more juice. 🙂

See you tomorrow for day #2.

 

 

Nine Robins

Yesterday while I was walking the dog, I glanced over to the neighbor’s yard. There, in a grassy area, where the snow had melted, there were 9 Robins, that I could count…all hopping, and pecking. Spring is here, and I am happy.

Inner voices?

When I was young, (under 10) there were certain things that I daydreamed about, and thought about. I loved animals, and I was convinced that I had a psychic connection to them. I felt that they were able to understand not only my words, but my thoughts. I had two pets at home, but there were frequent visits by strays. Dogs, cat’s, birds, and other animals. My mother was against keeping any of them, so they remained outside, coming, and going.

I also played a lot in our woods. I had a “tree house” that I built from scraps of wood. It was basically a platform in a tree, but it was mine, I spent hours there, especially after reading My Side of the Mountain. I enjoyed being out in nature, alone.

When inside, I spent time reading, and watching TV. National Geographic, Wild Kingdom, and Jaques Cousteau, were my favorites, leading to a hope of being a Veterinarian, or Oceanographer when I grew up.

As I grew older, I began to enjoy fantasy novels. The Hobbit, LOTR, and The Chronicles of Narnia, were some of the first. I was fascinated by magical worlds, and creatures. Fast forward, a bit, and I discover the darkness…Salem’s Lot, The Stand, and Pet Sematary. The books, not the movies, of course. Thank you, Steven King, for some of the most frightening nights of my life.

Slowly, but surely, my interest in the unknown, occult, astrology, tarot, witchcraft, etc. grew. I had a collection of books, cards, crystals, candles, and trinkets. I also visited a psychic, who was actually quite good, and at the time, and looking to now, spot on…

Personally, although I did get pretty good at reading cards, and I am still very good at reading people, I have never really pursued it. I just know it is there. I have often wondered if these abilities are in us all, or if certain people are just gifted.

Lately, something is pulling at me. Leading me to pursue this interest again. I seem to have an interest in herbs, meditation, spells, and planting…spring has arrived, and I am suddenly drawn to healing myself. I am sure there is a purpose. Afterall, that psychic told me that I was a healer. Perhaps in healing myself, I will find the right path. I have been through many years of chaos. I hear that inner voice urging me to move forward.

I think we know deep down who we are. We just have to strip away what the world tells us we should be.

 

 

Venting.

Well, ya gotta love social media. A few hours after I make a veiled post about changing my diet, someone comes out of the woodwork to present an argument about how it isn’t good for humans to only eat plants…smh.

I have been sick for almost 3 years now. I can almost pinpoint the first day I noticed things were going down hill. A stressful job, bad eating habits, elderly mother getting sick, constant colds, etc.  Enter Lyme, depression, chronic fatigue, chronic pain, tinitus, skin issues, high blood pressure, high cholesterol, weight gain, etc. Now, add treatment: Antibiotics, supplements, prozac, tramadol, flexeril, lipitor, cymbalta, lyrica, etc. None of these work, most only treat symptoms.

I wish people would just learn to STFU. Why not be supportive, or just not comment?  I doubt that juicing for 10 days, and then going vegan is going to hurt me any more than those meds I was taking….anyhoo….just had to vent that.

I am very excited about this. My daughter is going to buy me the juicer for my birthday, and I have set a 10 day goal. Spring is here, Summer is on the way, and I would like to enjoy the outdoors again. Hopefully I can look good doing it too. 🙂

 

Get well, and save the planet.

Well, it’s been a few days since I have had the time, energy and clarity to sit down, and  write a post. Truth be told, I am mentally and physically exhausted. My daughter is working the 3-11 shift, and the kids have been little, well…walking advertisements for corporal punishment. We all made it through the “snowpocalypse”, and the weekend, and now it’s time to get on with business. I have a couple days to myself…I think.

As you may have noticed, I can get quite passionate about things, especially if I feel like there is an injustice afoot. Sometimes, I go off on a crusade, but more often than not, I feel like the injustice is just to great, and the opposition is too stiff, for me to handle on my own. Not having the resources to affect change, or the health to get out and fight,  I may just make a post (or many posts) to social media, announcing the injustice, and trying to educate others who may be better suited to promote change, or slay the dragon. Every little bit helps. If just one person tells another, or makes a stand, we will all eventually be better for it.

As people with chronic illness,  we have a myriad of injustices to deal with on a daily basis. Whether it is the denial of our illness by family, friends, and doctors, or the lack of proper treatment, tests, and solutions, we are all bombarded daily. We are beaten down, made sicker, and seen as crazy. We lose friends, loved ones, and ourselves. We withdraw from the world, finding comfort where we can get it, either with a six pack of cats, a loaded pizza, or a subscription to “Pajama’s Weekly”. This is our instant gratification, our temporary “high”. Unfortunately, none of these things will give us our health back, or cause a lasting change in our situation.

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Chaos, Temple Food, and the Future.

It has been a rough few of weeks for me. As some may know, I live with my Daughter, and 3 grandsons, ages 8,6, and 6 months. Anyone who has children knows that this is not exactly a peaceful environment. I love them all, but I am ill, and on bad days, it’s a struggle to deal with the chaos. Chaos causes anxiety, and anxiety causes flares. There have been a lot in the last month or so.

I moved in here to help my daughter through her pregnancy, until she went back to work.  I have recently begun the application process for an apartment in town that is for low income, disabled, and elderly people. It is nothing spectacular, but my mother lived there for years, and I am familiar with it. It is secure, has handrails in the bath, is close to everything, electric is included, and will allow me to keep my pets. I am looking forward to being in my own quiet space again. The only downside, is that the waiting list is long, and could be up to 2 years. I’m keeping my fingers crossed, that it will be much less.

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I’m fucking pissed.

For those of you who are offended by colorful language, I apologize.  However, after the day I have  had, there is no statement more accurate.

Today I had an appointment with my PCP, who up until now has been pretty good at listening to my complaints, and trying new things. I did have to hound him a bit, but things came together, and (I thought) all was well.

Today was a cluster-fuck if ever there was one. I get to my appointment on time, as usual. I get called up, get my vitals taken, and the girl say’s, “Do you feel ok?  You don’t look so good.” (I’m in a Dr.’s office…DUH.) Anyway, she leaves, and 15 minutes later, a woman who I have never seen before, comes in, tells me her name, and why she is there, (Which I immediately forgot) and begins to ask me questions about why I am there. Anyone who has Lyme, or another chronic illness that blesses you with memory loss, and brain fog, can imagine that this line of questioning sent my anxiety through the roof. So, in the midst of trying to answer, doing the required push pull squeeze crap…I’m losing it. I finally get to explain that all I want to do is get a referral to a Neurologist because I can’t remember things, and have problems with speech. It has now been about 30 minutes. I have a ride waiting outside. She finally decides to get the Doc, who comes in and tells me that he has no final report from my surgery, and needs that because that is what has allowed him to recommend keeping me out of work. (For over 2 years. My surgery was last year.) Also….go figure, he can find no record of the Cat-Scan I had on my head. He then tells me that Chronic Lyme, or PTLDS, or Fibromyalgia are not diagnoses that will allow me to be deemed disabled. (At this time, my anxiety is so high, it is all I can do to keep from crying.) He also explains that I need all kinds of blood work prior to being accepted by the Neurologist. OK, fine, now my phone is ringing….ride is waiting. They both can see I am ready to lose it. He hands me my blood work paper, and say’s it’s ok do it when you can…and hands me my jacket as I turn to leave without it….good grief.

I get home without going postal, but now I am on a mission…

I spent the last 4 hours, sorting, copying, and placing all of my discharge papers, test results, and Dr. notes (From all doctors.), in chronological order. I intend to present these at my next visit.

It seems that the health care office I go to just changed their system, and not everything went well. My cousin, who also goes there, made a FB post which indicated she had basically the same experience not 10 minutes prior to mine.

Another friend of mine with MS had her health coverage terminated with no warning.

It was NOT a good day.

Right now, my brain is mush. My head is pounding, and I need some Ibuprofen, but I can’t get the lid off.

Stay tuned for chapter 2 tomorrow….

 

 

 

Family medical history, your DNA, and Lyme.

As an adoptee, I am thankful that there are people out there that take in unwanted, or orphaned children and raise them as their own.

That being said, I would like to remind the world, that when a child grows up, they may have questions, and concerns regarding their heritage, medical history, and biological relatives. I feel that it is the child’s right, once an adult to be provided with this non-identifying information.

I have a sister, who is 13 years my senior, and also adopted. We are not, as far as I know, biologically related, and she is not interested in any of this information about herself. She also has no children, or grandchildren to be concerned with. That is her right.

I began having the need to know while pregnant with my first child. My doctor asked about my family history, and I had no information about my side of the family. This was before the internet, and search registries, and to top it all off, I had an adoptive mother who was appalled, and enraged that I would even think to ask for any information about my birth parents.

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Gaming saves my sanity.

Because I am home, sick, and have no life outside of family & doctors, I need to find things to occupy my mind; the one thing that still works (sort of). What I mean by sort of, is that I seem to have no trouble riding my train of thought while typing, but if I were to attempt to read these words aloud, or just talk, It would come out less than intelligently, as I pause to remember words, or figure out where I was going with this…

Anyway, I am a grandmother. I live with my daughter, and her 3 young boys. (Ages 8,6 and 7 months.) I moved in to help, and be helped, as those of us with chronic illness sometimes need help, and young mothers with 3 boys do as well.

I am not in any way shape or form a “morning person”.  I wake up, take the dog out, then have 3 gallons of coffee while I check my Facebook, Ebay, and blog. After an hour or 2, I start any chore I need to do, and figure out what to do for dinner. This all needs to take place before noon, as that is usually about the time I run out of will & steam. Barring any need to visit a doctor, or save the world, this is the when I look for something to occupy myself until dinner time. What does a 52 yr old grandmother do for 6+ hours a day?

I play video games.

Yes…you can stop laughing now.

Truth be told, I am an OG. (That does not stand for Old Grandma.)  lol,  It stands for Original Gamer.

The Commodore Vic 20 came out in 1980. I have spent countless hours typing “N”, “S”, “E”, and “W”. Not to mention drawing maps….

In my house, the Vic 20  evolved into the 64, and I followed those up with Atari, Nintendo, PC, Play Station, and Xbox games.  In high school, many an awesome Friday night was spent at the arcade playing pinball (The Black Knight), Tempest, and Galaga…ah the fond memories.

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Tiny dog, I wuff you.

This is Tino. His real name is Valentino. He was born on Valentines day 2 yrs ago. He is a long haired Chihuahua. I found him last June, on Craigslist. I would not recommend this route, but I got lucky, and so did Tino. His first mom was being very careful about who he went to, we exchanged emails, and phone calls, and became Facebook friends.

Tino was part of a family with 2 older dogs. His human parents were expecting, and moving. I am convinced he would have been unhappy, and not received enough attention, as he is, if nothing else, the center of the universe. I am sure his first human mom felt the same way.

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When life gives you lemons…

…add coconut.

 

So here I sit, midway through the day, and shortly after seeing my “Behavioral Health” professional.  I am feeling a bit ornery, and have decided to vent a bit.

Two months ago, on a day when I was in extreme pain, I saw my PCP, I had him send a referral for me to go to the pain management facility. (With state insurance, no one wants to prescribe pain meds.) When I finally got an appointment, which was a struggle in itself, I made my way there via med-cab. It was an hour and 15 minutes away, and by the time I got there, I was wiped out. They don’t do anything on that first visit, except make you pee in a cup, and interviewing you. The Doctor explained that she was recommending Gabapentin, (Neurontin) for nerve pain. Here is some basic info on nerve pain:

–Nerve pain is a particular type of pain that feels different to other types of pain.
It often feels like shooting, stabbing or burning pain. Sometimes it can be as sharp and sudden as an electric shock.
It’s often worse at night. It might be mild or it might be severe.
Nerve pain can be due to problems in the central nervous system (brain and spinal cord), or in the nerves that run from there to the muscles and organs.
Nerve pain is usually caused by disease (such as diabetes or vitamin B12 deficiency) or an injury to the brain, spinal cords or a nerve.
Your doctor will diagnose it by listening to you and examining you, and perhaps doing some tests.–

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You don’t “get it” until you get it.

Well, it has happened. Someone I love, and who was skeptical about my Lyme disease symptoms, has been diagnosed with Lyme. Bitten two months ago,(Never went to Dr.) woke up 4 days ago and couldn’t move. Positive Lyme tests, and antibiotics started. His exact words: “I really couldn’t understand how you were feeling. I do now.” It is difficult watch, knowing what is to come. I wouldn’t wish it on anyone. More to come…

My post to Social Media…

Some of you may have noticed that I left all of my Lyme & Chronic illness groups. It is not because I am suddenly well, cured or in remission. It is because I am sick of being sick, and I am sick of seeing it in my feed. I am sick of people being rude to each other because they know more, or have been sicker longer. I am sick of people cheering on Yolanda & Avril…let me tell ya, if I had that much money, my face would be all over TV & Social media screaming about the plight of Lyme sufferers…not jetting off somewhere to a cure that no one but me can afford, and then disappearing….into silence away from the media. When newly diagnosed, you will find a sense of camaraderie within the Chronic illness community, and you will learn a lot. You will see that you are not alone, and that there are many people doing good work. Sooner or later though, you will see the darkness, the hate, the bullshit, the ignorance, and the pain. It is at that moment, when you will either get sucked in, or move on. I’m moving on. I will live my life, as best I can, and not be drawn into the pity party. I will not use my illness to gain attention, or as a tool to make people feel sorry for me, or do things for me. It will not be in every sentence I utter to the world. I have things to do. Wallowing in an illness is not one of them. So, feel free to unfriend me, if you wish. I’m done.

 

Dr Richard Horowitz Answers:

In a recent Q&A with Dr. Richard Horowitz, he was asked the following, and answered.

Via Kriss Constantine 💚

Great Info!💚 when we asked Dr. Horowitz he answered!!!!
Question:  What are the most common causes of treatment failure?
Answer:  Without a doubt it is the co-infections (Babesia, Bartonella, Mycoplasma) or because the Lyme has not been treated aggressively enough. So, we have to treat generally – the cell wall forms of the Lyme, using the cell wall drugs like penicillins, norcephalosporins. We have to use cystic drugs that could be Plaquenil or grapefruit seed extract, but rarely Tindamax, Tinidazole, and Flagyl. We use the intracellular rotations. So the issues of treating all three forms of the Lyme and biofilms like Serrapeptase are some of the basics, but what happens is some of the doctors just don’t rotate often enough, so I find that I have to rotate every 30 days. If someone is not noticing that they are getting better within 30 days of a treatment, it’s either because they are not on a cell wall drug regimen or the intracellular regimen they are on may be herxing them. You have to know the wiring of the body.

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Something wicked…

…this way comes.

So yesterday was Friday the 13th.  I am only mildly superstitious, and I feel that I am safe from black cats, because I have 2 cats. (Who are black & white.) I also never walk under ladders, or anything that can fall on me…if I can help it, and I can’t remember ever breaking a mirror. To top it all off, I am Irish, and luckiness flows through my veins… 🙂

However, yesterday was a gloomy day in NW Connecticut. Nothing felt right. From the time the sun came up, the sky just grew darker, and more foreboding. It was not a bad Lyme day, in comparison to most, and the pain from my neck surgery was bearable, so I was feeling ok. Something was just not right. One phrase played over and over in my mind: “Something wicked this way comes.” I was pretty sure that I was not channelling Bradbury, but the feeling lingered throughout the day, try as I might to suppress it; perhaps obtaining a lightning rod was in order.

Around 4 pm, I was lying in bed watching Netflix, and fell asleep. I was only asleep for about an hour when I awoke. The T.V. was still on, and the cats were sound asleep curled up in balls in ther respective favorite spots. Oddly enough, the feeling of impending doom was gone, and I was wide awake. I felt great. I had the urge to go outside and get some air, but the sun had not returned, and I did not want to be caught in the rain. Instead, I did the dishes, chatted with my daughter, and grandchildren, and made a light dinner. So far, so good.

Around 7pm, I went back to watching Netflix, and did a bit of Facebooking. Near 9, I made my way to bed, continuing my show. At 12:30 am, I was hungry and had some tea & graham crackers. When 3 am rolled around, and I was still wide awake, I knew I was doomed. By this time, even the cats were confused. I lowered the volume on the T.V., and tried to find a comfy spot. I even closed my eyes, but my thoughts raced. I pondered everything from the plot of the Netflix series, to what my next blog post should be about. I clicked “Are you still watching?” 3 times. Yes I am.

Looked at clock: 4:20…haha…

Looked at clock: 5:45…UGH…

I fell asleep at some point after that last time check.

(Kids yelling, running down hallway, someone knocking on door)

What the fuck??!!

I am instantly pissed off. I get up and check the clock. It is 10:20 am. I feel like shit. I get up, get my slippers on, and head out to the kitchen with my eyes partially glued shut from sleeping, my stomach growling, and my head pounding.

(Kids still yelling and running.)

They see me, and retreat back to the living room. I am not a morning person, and everyone knows it. Even the 5 yr old.

I stumble to the bathroom, then out to make coffee. Thankfully, some wise person has brewed a pot. All is quiet, as I pour and stir…

(Kid screeches, another yells, laughter ensues, out they come running into the kitchen…)

I am stirring, my head is pounding, I turn toward them…

“THAT’S ENOUGH!!!” I yell with all of the power I can muster.

They freeze in their tracks. I can only imagine that I look like Medusa after the night I had.

“GO WATCH T.V. QUIELTY!”

(I see their mother behind them. They do not know she is there. She is trying not to laugh.)

They turn to head back to the living room, and see their mother. They stop…they look back at me, then her, and walk slowly toward her, back to their cartoons.

Rock and a hard place.

All is quiet now, I have had my coffee. The kids, and grandkids are heading out to a picnic.

My daughter comes into my room to say goodbye, and do I need anything at the store.

“No, thank you.”

“Mom, you might want to brush your hair.”

I look in the Mirror.

Medusa…

Something wicked came alright… Neena before her coffee.

I am still laughing.

 

medusa1

 

The truth about Lyme…

What you should know.

May is Lyme disease awareness month.  I am sure you have seen many tweets, and social media posts about it.  You may even know someone who has it, but if you do not have it, you may not realize how devastating, confusing, and life altering it can be.

Lyme disease (and other infections that can come with it) can creep up on you slowly, or hit you all at once. It can start with something simple such as having flu-like symptoms, or it can cause seizures.  It can give you a migraine, or a heart attack. Nothing, and no one can predict what symptoms you will have.

There is no readily available, (Physician accepted) accurate test for Lyme.  Even if you see the attached tick, and have a bullseye rash, you can still test negative.  If you test positive, you may be told it is false positive.  You may also be told “There is no Lyme in this State.”  There is also no way to tell how long you have had it. There is no vaccine, and there is no cure. It is a true Pandemic.

Lyme is known as the great imitator, because it mimics the symptoms of many other diseases, and syndromes.  There have been people who have been diagnosed with Fibromyalgia, CFS, ALS, Alzheimers, Parkinsons, MS, Bi-Polar disorder, Depression, PTSD, and many other things…who actually have Lyme.

If you want to know what it feels like to have Lyme, look at the list above of the ailments it mimics.  That is what it is like to have Lyme. Having one, or all of those, on any given day, and in any combination.

Why is Lyme so devastating? How can it cause all of these ailments? Why can’t we test for it and cure it?

Because the Lyme bacteria is a Spirochete.  (A Spirochete (order Spirochaetales), also spelled spirochaete, is any of a group of spiral-shaped bacteria, some of which are serious pathogens for humans, causing diseases such as syphilis, yaws, Lyme disease, and relapsing fever.) Spirochetes can enter all tissue, bone, and your brain.  When faced with an unfavorable environment, such as the introduction of antibiotics, these spirochetes form round bodies, or “cysts” as a method of self-preservation. They literally hide from the tests we use to find them, and the medications we take to kill them.

More here on spirochetes.:  http://www.environmentalevolution.org/environmentalevolution.org/Fair_Use_files/312-Roundbodies.pdf

Lyme can be transmitted to you by ticks and other vectors, blood transfusions, sexual contact, and in utero.

You can believe the Doctors, the IDSA, and the CDC, but the fact of the matter is that there IS proof that Lyme, and Chronic Lyme exist. There IS proof that the tests are inaccurate.  There are 300,000 new cases (or more) each year, and it can kill you.  Lyme Advocates have been battling for the truth for 40 years. There will be accurate tests, there will be a cure, but we have to spread the word. We have to fight together, to bring about change, and much needed help for the millions of men, women and children affected all over the world.

I have Lyme, and I need a cure.

Recovering from surgery…flaring & herxing?!

I never know from one day to the next how I will feel, what will hurt, or if a stressful situation will send me into a flare.  Neck pain is but one of the many symptoms of lyme.  I have been struggling with neck pain for years.  It has been one of my worse symptoms, and combined with the physical damage I already have in that area, (bone spurs, and narrowing) it is constant, often leading to migraine type headaches.  I also have limited range of motion, and pain from my shoulders to my hands. With treatment options, such as physical therapy, and steroid injections ineffective, surgery was recommended as a last resort by my PCP, and an orthopaedic surgeon.

Last Tuesday, I had surgery performed on my neck. The procedure is called an “anterior cervical discectomy and fusion”.  I am still recovering from the surgery, so, as of right now, I am not sure what the end result will be, but I am resting, taking my medications, and hoping for the best.  Unfortunately, lyme disease complicates everything.  There was no way to tell how much of my neck pain was the result of lyme, and how much could be attributed to physical defects. This carries over to the healing process as well.  I do feel that the incision site itself is healing at an appropriate rate, however I believe that my body was sent into a massive flare, and herx. due to the stress of surgery, and administered antibiotics.  (Yes, all doctors know that I have lyme, but I am not currently treating it.)

This is the first surgery I have had since my diagnosis. (My last was 24 years ago.)  I am hoping that any of my followers who have this type of experience after surgery, will comment, and let me know if my reaction is common.

I will keep you updated on my progress. Thank you.

 

May is Lyme Disease Awareness Month…

Take a bite out of Lyme.

The easiest way to help the millions of people suffering from Lyme Disease and its related co-infections is to DONATE. Your donations go directly to where it is needed most – from training doctors on a global level, to helping find better diagnosis and treatment options. Your generous gift is vital to helping stop this prolific, debilitating, and often misdiagnosed disease.

The Lyme Community has selected the International Lyme and Associated Disease Society (ILADS) to receive all the proceeds of the campaign. Your donations will go to their non-profit foundation, International Lyme and Associated Diseases Educational Fund (ILADEF). ILADEF is a registered 501(c)(3) non-profit organization. Your contribution is tax deductible to the full extent allowed by law.

This selection, affirmed by popular vote, recognized ILADS as the worldwide leader in Lyme education and training for medical professionals.

ILADS promotes understanding of Lyme and associated diseases through research, education and policy. It strongly supports physicians, scientists, researchers and other healthcare professionals dedicated to advancing the standard of care for Lyme and associated diseases.

ILADS’s strategic goals are the following:

1. Improve understanding of Lyme Disease.

2. Review, develop and implement clinical research programs that enhance the management of Lyme and its associated diseases.

3. Advance the standards of care.

4. Review, develop and implement programs for physicians and other healthcare providers support –  including materials, advice and education.

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Over 50, and living with Lyme Disease.

I am sure that I am not alone when it comes to shirking my duties regarding preventative health care.  We all have busy  lives, children, and grandchildren, and it is sometimes difficult to make time for appointments, and tests. As the years fly by, we put everything on the back burner until something major happens to snap us back into reality.

I had just turned 50 when I was diagnosed with lyme disease.  Being middle-aged, and trying to find a diagnosis for what ailed me was a challenge to say the least.  I had already sailed through menopause, without a lot of issues, and aside from a bit of bitchiness, and minor hot flashes, I was thankful that I had come out on the other side quickly, and in better shape (mentally & physically) than some of my friends.

Because of my age, many of my aches, pains, and other symptoms were chalked up to “normal aging”.  No matter how hard I tried to explain that my bouts with “sweats” were not anything like a hot flash, no matter how many times I explained that my pain “migrated”, no matter how many times I said that I was NOT depressed, I was continually dismissed, often with a prescription for antidepressants, and a referral to another doctor.

Luckily, I found a lyme literate NP, and was treated for 5 months, with oral antibiotics, cyst busters, bio-film busters, natural supplements, probiotics, and finally IV ceftriaxone, which in my case gave the most improvement with my neurological symptoms.  Unfortunately, my LLNP had to move out-of-state, and treatment stopped.  That was a year ago, and all of my symptoms have returned.

I headed off to my PCP who happens to be a member of the IDSA.  I was immediately given a diagnosis of PTLDS, (post treatment lyme disease syndrome).

I followed all of the recommendations suggested by my PCP,  took all tests required of my age group, and then some.  These included blood work, mammogram, colonoscopy, x-rays, cat scans, ekg,  and a stress test.  I found that my blood pressure, and cholesterol were high, bone spurs were causing the pain in my neck, and I have an extra vertebra in my lower back, that may or may not be contributing to pain there.

I am now treating the high blood pressure, and cholesterol.  I am scheduled for surgery at the end of April to hopefully lessen the pain in my neck and shoulder, and once that is done, we will address some other issues.

I am currently not being treated for lyme, but I am still watching what I eat.  I only use Himalayan pink salt, I avoid sugar, and try to stay away from GMO’s and processed foods.  I use coconut oil for oral health, and it is wonderful for post-menopausal skin care. (especially face & neck, I have seen a huge improvement in that area) I still use probiotics, and I try to get out and walk, as much as my body will let me.  Sometimes we have to push ourselves a little.

As middle aged people with lyme, our bodies are ever changing, and new symptoms may appear.  No matter how busy we are, we should always keep up with our preventative care. This is one way we can be sure our newest symptom is not due to a new condition.  After all, we want to be around for as long as we can, and ruling out cancer, diabetes, and heart disease is a step in the right direction.

I have days when I am too tired to think.  I have days when the sound of my grandchildren playing causes me to become agitated.  I have memory issues, and days when I don’t get out of bed.  I have days when my hands hurt so badly, I can’t hold a pen.  I have migraines that last for days.  I have days when I can barely walk to the bathroom.  I have ticks, and twitches.  I have LYME DISEASE.

The worst thing we can do is to surrender to lyme.  With the time we have left, we must fight, and advocate for others who will come after us.

Treatment Shaming.

I spend a lot of time on Facebook, and I belong to quite a few Lyme, and chronic illness groups there. In recent weeks I have noticed a trend in some of the groups that I will call “Treatment Shaming”. This occurs when one person or a group of people attack, make fun of, or dismiss a persons current treatment method.  They believe that their way is the right, or only way to treat, and any deviation is just plain ignorance. People who are shamed are ridiculed and blocked from the group when they argue with their “shamers”.

I have said this before, and I will say it again.  We are all human, and in that sense we are alike, however, biologically (DNA-wise) we are all very different. A treatment that works for one of us, or 10,000 of us, may not work for others. Our bodies process toxins differently, and we are affected differently by the bacteria, or virus that is infecting us. We already know this. We can see it in our daily lives. Perhaps we have a child that is lactose intolerant, and another that is not. Even within a family, our body’s chemical reactions are different.

As people with Lyme, or any chronic illness, we should be far more sensitive to each other’s feelings.  We know the struggles we all face, and if we promote treatment shaming, we are only contributing to the emotional strain on our fellow warriors.

I don’t care if you have had Lyme for 20 years, are now cured, and you are convinced that you know how to treat it. This does not make you the Lyme treatment god. This does not make you better than anyone else. What it does do is put you in a position help others. It is a position of responsibility to help others find what will effectively treat their Lyme.  That means putting it all out there. Every treatment, every doctor, every diet, EVERYTHING.

We are all fighting the same battle. Some of us are on the front lines, some of us are in the trenches, and some of us, are just being deployed, but we all need to work together to win the war. Share your knowledge, be open to new strategies, and have our backs.  That is all we ask.

In the spirit of healing together, I have started a new group on Facebook. This is a group for all. We have only 10 members as of right now, but it is my hope that we grow quickly.  You do not have to post about Lyme. You do not have to follow any treatment protocol, you can just come in and post. We can share what we know, discuss what we don’t know, and laugh at each other at 3 am when none of us can sleep.

Lyme Disease – Healing Together

Lymehealban

 

Loving yourself.

One of the most important things in the process of maturing, is taking responsibility for your own actions. Human beings are flawed. We hurt each other, and ourselves every day.  Many of us grow up, and come to terms with this, and attempt to change. Others of us do not, continuing the cycle, putting the blame on others, or events in our lives. “I wouldn’t be like this if only____”.  “I wouldn’t have done that if ____”. This behavior makes us more self-centered, and guarded, because we are lying to ourselves and others. We become afraid that others might discover, our lies, and reveal our fears. Blaming anything, or anyone for our circumstances is much easier than accepting the fact that we alone are responsible for how f**ked up we are.

When you realize that it is ok to be scared, embarrassed, or insecure, and that the people who love you will accept you in spite of your flaws, you will then be able to move on, and slowly peel away the layers of self-doubt. You will soon realize that you have lost contact with some of your old issues, and find that they were only in your head. You were just treating yourself as your own personal punching bag. You will slowly, lose contact with the people in your life that enabled you, and allowed you to exist in that state, because they too were in that state.

Be honest with yourself, a little bit at a time, and through this process you will begin to see clearly all of the damage you have done to yourself and others.  This is not the time for sadness, or fear, or regret. This is not an excuse to revert back to your old behavior.  It is an opportunity for you to change, and make amends.

Do not be discouraged if you feel you have made great strides in changing, but others are not convinced.  This is normal, and expected.  These things take time. Do not shoot for the moon, just reach the next step, and above all be honest with yourself first.

One day you will look back, and be proud of how far you have come. You will be surrounded by the people who love you, and you will finally love yourself.

Update.

It has been a long time since I have posted to this blog.  I keep trying to muster the energy, and ability to do so, but Lyme effects the brain.  It makes us foggy, and emotionless.

I will be going in on Tuesday to have another shot in my neck to hopefully eliminate some of the pain I am in.  I have no hope that it will work, as the last one didn’t, but this is something I must do so that the doctor can decide if I need surgery or not.

I have moved in with my daughter, and 2 grandchildren, which will help us both to struggle less financially.

I have learned that despite the help that online Lyme groups can provide, it is best not to live in that world.  It can be counterproductive, and often leads to more stress. Get in, get what you need, and get out.

I have learned that I will lose friends.  Not everyone has the ability to understand, support, or go out with a person who has an invisible illness, and that is OK.  It is not my fault.  It is a hard road to travel, and not everyone is cut out for it.

I have had to learn how to find my own happiness.  Things I like to do alone, such as write, watch TV, cook, paint, etc. These are the things that relax me, and give me joy when I do not have the energy or ability to venture out.

We are sick. We do not have to apologize for it, or lock ourselves away from the world. We just need to find something that makes us happy, and allows us to live a relatively normal life as we try to heal ourselves.

 

 

 

Read this:

Cause of MS? Unknown, Cause of Fibromyalgia? Unknown. Cause of Parkinsons? Unknown. Cause of ALS? Unknown….Alzheimers? CFS? the list goes on…(Go ahead & google it.) Cause of Lyme disease? A SPIROCHETE. A tricky little bugger that no one can seem to make an accurate test to detect….I wonder why??? Symptoms? Same as all of the above, and more. What part of this are you not getting?????????

Think  outside the Box

 

I’m losing my mind today…and I am sick of being lied to.

Honoring Veterans.

Veterans Day, Nov. 11 2015

First, I would like to wish all of our veterans best wishes on this day. I would also like to share my gratitude for their selfless service to our country. My father was a veteran of WWII. Many of my uncles, and cousins were/are also veterans.

People do not join the armed forces lightly. They join because they wish to serve our great nation, and uphold its ideals.

They fight and die each day to defend us, and the constitution. They fight & die each day to give hope & freedoms to other nations.

No matter what your views on war in general, or particular events involving our troops, you must honor our service men & women. They fight for us all.

You should also be mindful that many of our veterans are homeless, in need of medical care, and suffering because of their service, and deserve proper treatment at all times.

We should NOT allow any politician to give rights to others if we are unwilling to help our veterans FIRST.vetday

The poisons we are fed…

Real life problems…you never think about. (Out of sight, out of mind.) Many of you will not read this because of the length, but you should if you care at all about yourself, your family, and future generations.

“Research has shown that the food additives used in hundreds of children’s foods and drinks can cause temper tantrums and disruptive behavior. A Government-funded study confirms what many parents have long suspected about the effect of chemicals put into sweets, biscuits and foods.”

These behaviors are often treated with drugs. Drugs with side effects….this is only one possible reason why we wind up with crazed young people wielding guns, and a myriad of undiagnosable illnesses causing a strain on our healthcare, and economical systems.

If you look around, you will find, that healthy alternatives, such as organic foods, or even a salad price, as compared to a burger, or hot dog, put many people in a position where they cannot afford to eat healthy, non GMO, preservative free foods. Let alone feed their families on them.

Also, many naturopathic, and homeopathic remedies are poo poo’ed by main stream medicine, not offered, and in many cases not covered by insurance. (Notice recent suspicious deaths in the medical field.)

It is not just kids, and it’s not just our food…

It is in our water, in our air, in our animals, and in the insects that we live with.

Nearly 1 in 2 Americans (133 million) has a chronic condition. (Physical, mental, or both.)

There are 300,000 new cases of Lyme disease reported each year according to the CDC.

In the US, the number of people with MS is estimated to be about 400,000, with approximately 10,000 new cases diagnosed every year (that’s 200 new cases per week).

(I will not list every chronic / invisible illness here.)

By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.

That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million.

About 31 percent of adolescents suffer from at least one moderate or severe chronic condition such as asthma, depression, or ADD/ADHD.

Sixty percent are between the ages of 18 and 64

90% of seniors have at least one chronic disease and 77% have two or more chronic diseases.

In the United States 4 in 5 health care dollars (78%) are spent on behalf of people with chronic conditions.

Do the math.

BUT IS HAVING AN ILLNESS REALLY THAT BIG OF DEAL?

The divorce rate among the chronically ill is over 75 percent.

Depression is 15-20% higher for the chronically ill than for the average person.

Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides, and more than 50% of these suicidal patients were under 35 years of age.

Chronic diseases—heart disease, cancer, chronic obstructive pulmonary diseases and stroke—are the leading causes of death in the United States.

Seven of every 10 deaths in the U.S. are caused by chronic conditions; heart disease is the leading cause of death among both men and women, followed by cancer and chronic obstructive pulmonary diseases—diabetes is seventh.

Chronic, disabling conditions cause major limitations in activity for more than one of every 10 Americans, or 25 million people.

Mental health and physical health are fundamentally linked. People living with a serious mental illness are at higher risk of experiencing a wide range of chronic physical conditions. Conversely, people living with chronic physical health conditions experience depression and anxiety at twice the rate of the general population. Co-existing mental and physical conditions can diminish quality of life and lead to longer illness duration and worse health outcomes. This situation also generates economic costs to society due to lost work productivity and increased health service use.

Yeah it’s a big deal!

So, you are sitting there wondering why all of these people are ill. Why are there school shootings, why are there so many suicides, why are all of these people sick, out of work, homeless, and dying…only to be shunned and ignored by society? We are being poisoned. Not just by our air, water, food, and insects…but by drugs….drugs that are meant to help us…or so we are told.

Using a computer program, scientists analyzed 5,600 drug labels and more than 500,000 labeled effects. They found that the average drug comes with a list of 70 potential reactions, according to researchers.

In fact, the more commonly prescribed drugs averaged around 100 side effects each, with some drugs containing as many as 525 listed reactions.

MSNBC reports:

“The greatest number of side effects was found in antidepressants, antiviral medications and newer treatments for restless leg syndrome and Parkinson’s disease. In general, medications typically used by psychiatrists and neurologists had the most complex labels, while drugs used by dermatologists and ophthalmologists had the least.”

You might not realize that more than 700,000 people visit U.S. emergency rooms each year as a result of adverse drug reactions.

According to the U.S. Food and Drug Administration (FDA), adverse drug reactions from drugs that are properly prescribed and properly administered cause about 106,000 deaths per year, making prescription drugs the fourth-leading cause of death in the United States.

Given that the FDA, as well as the CDC are government agencies, and have a propensity to under-estimate things, I would believe the numbers to be much higher.

Tiny amounts of pharmaceuticals — including antibiotics, hormones, mood stabilizers, and other drugs — are in our drinking water supplies, according to a media report.

In an investigation by the Associated Press, drinking water supplies in 24 major metropolitan areas were found to include drugs.

According to the investigation, the drugs get into the drinking water supply through several routes: some people flush unneeded medication down toilets; other medicine gets into the water supply after people take medication, absorb some, and pass the rest out in urine or feces. Some pharmaceuticals remain even after wastewater treatments and cleansing by water treatment plants, the investigation showed.

Although levels are low — reportedly measured in parts per billion or trillion — and utility companies contend the water is safe, experts from private organizations and the government say they can’t say for sure whether the levels of drugs in drinking water are low enough to discount harmful health effects.

An then there are the chemicals…which include: Fluoride, Mercury, PCB’s, MtBE, Hexachlorobenzene (HCB), Chlorine, lead, arsenic, DCPA, Dioxin, and DDT to name but a few.

All of these chemicals (and more) have been found in water. While the amount of these chemicals in water is usually not enough to cause significant harm, the possibility of long-term effects still exists. Here are some of the negative health defects13 caused by excess chemicals in the water:

Toxic chemicals in water can cause brain damage. In one study, children who were exposed to high levels of fluoride had lower than normal IQ’s.
Alzheimer’s disease and dementia may be caused by lethal amounts of fluoride.
According to New Jersey’s Department of Health, male children who lived in areas with fluoridated water experienced two to seven times more cases of bone cancer than other male children.
Toxic chemicals in water can cause birth defects and prenatal deaths.
Excess chemicals in the water have also been linked to problems with the immune system. (Many of our chronic illnesses are immune related.)

To sum this all up, we have bad food, bad water, bad bugs, and bad drugs. None of these seem to be a concern for our elected officials. Why is that? It is more lucrative for them to keep us sick. They will try to manage our parenting skills when our kids misbehave…instead of fixing a possible issue…they will ruin families, and throw drugs at us. They will try to mandate shots, which are filled with poison, and attempt to silence any opposition to Big Pharma & GMO’ers. They will blame us rather than take responsibility. They will tell the media what to tell us, and we will follow blindly lest we be judged criminals. They will take away our rights, our guns, our lives, and our country, in order to fill their already overflowing pockets with money. We will be too sick or distracted by fabricated issues to do anything about it.

Just thought I should let you know.

On Doctors…

On Doctors…

Since a Lyme diagnosis was first mentioned to me, (one year, two months ago) I have been to 12 different doctors. Each with their specialty, educational background, and memberships to assorted medical associations. Of those 12, only 4 actually said that they believed in chronic Lyme, and its associated problems (co-infections, autoimmune issues, etc.) Of those 4, only 1 would treat outside of the IDSA guidelines, and cash payment was required so as to not ALERT the insurance companies to their treatment protocol, and charge them with a crime. (Not following the IDSA guidelines.)

Because of this, I am forced to see a doctor who is a member of the IDSA, and does not believe in chronic Lyme. They call it: Post Treatment Lyme Disease Syndrome. There is no test, cure, or treatment for this illness.

I urge all of my friends, whether infected, or not, to pick up a pen, type a letter, or scream from the rooftops, that we, they Lyme sufferers of the world need help.

We are dying slow painful deaths every day, and this is a sad state considering how much could be done with a little bit of time, money & research.

There are 300,000 new cases reported each year. If you don’t have Lyme, trust me, someone you love does, or will. This is not something you want to live with or watch your loved ones live with.

The doctors can only do what they are taught, and allowed to by law. We have to make it possible for them to reap the rewards of new research, and treatment plans. ‪#‎curethecdc‬,

I am an American.

I am an American.
My Grandparents were immigrants.
They came to this country in order to have a better life.
They worked hard, lived through the depression, and raised their families.
They were proud, and thankful for the opportunity to become American citizens.
Some of their children fought and died in service of this country.
They believed in our constitution, and the freedoms it afforded them.
They learned to speak English, and so did their children, all the while maintaining their individual cultural backgrounds, and religious beliefs.
Their children went off to school, careers, and college becoming productive citizens, and raising their children accordingly.

They demanded nothing.
They did not ask for special treatment.

I am an American.
I am proud to be an American.
I believe in freedom of speech, the right to bear arms, separation of church and state, freedom of religion, and that all are created equal.
I believe that as Americans we should keep a close watch on our leaders.
It is our job to protect our country, and what it stands for.

In light of recent events, I would say this:

Stay vigilant. Protect your rights, protect your families, and protect your way of life.

Times are changing, and now is the time to stick together.

UNITED WE STAND!

Ps: If you hate this country, stomp on our flag, or intend harm to US, get out while you still can.

Time flies…

…even when you aren’t having fun.

Today is July first. I am just 21 days away from the 1 year mark of my journey into the world of invisible, chronic illness. It has been a bumpy ride.

So far, I have been diagnosed with Lyme Disease, Depression, hypertension, chronic fatigue, and have been treated like I’m crazy. My Lyme treatment had been going pretty well until my LLNP moved, and I was forced to try and find someone else to treat. Unfortunately, this is something I can no longer afford. I am now at the mercy of my PCP who is an Infectious disease specialist, and a member of the IDSA. He of course, does not believe in chronic Lyme, and is steadfast in his belief that I do not have Lyme because my tests were not CDC positive. In order to appease him, and satisfy my need to get well, I am jumping through his hoops, which include more blood work, a mammogram, and a colonoscopy. It is sad when you find yourself hoping for something else to be wrong so that perhaps you will be able to be treated, and feel better. It would be nice to have my life back.

Many lymies would be freaking out right now, telling me not to go to him, citing personal experience of their misdiagnoses, and counter-productive treatment. I can’t go there. I am going to be a pro-active troubleshooter. All of these tests, and visits are covered by my insurance, and with no out of pocket cost, I will take advantage of the screenings.

A year is too long to be ill. My heart goes out to those who have been ill for many years. I just can’t deal with seeing my future continuing as this past year played out. I am sick of being sick. Watching life pass me by, not having a job, and not being able to run around with my grandchildren is really pissing me off.  I am going to take advantage of every damn test, and procedure they throw at me until one of these “professionals” cures what ails me.

I hope they are up for the challenge. I came into this world kicking, and screaming, and I will continue to do so.

The dark side of Lyme.

It has been several days since I have made a post.  I am going on 2 months without any treatment for Lyme. Although I am seeing a chiropractor for specific back, and neck issues, the adjustments to my neck have only increased my pain in that area. (I have fused vertebrae, and bone spurs in it.)

I have noticed severe mood swings, and a feeling of impending doom which will not abate. My anxiety level is high, and am back to being unable to fall asleep at a normal hour. All of this coupled with an inability to concentrate, has been keeping me away from the blog.

I am off to my PCP tomorrow, and am trying to figure out how to explain all of these symptoms. This too is overwhelming me.

This has got to be the worst symptom of Lyme & Co’s. I can deal with pain, and fatigue. What I can’t deal with is the feeling that I am losing my mind. When I can’t walk, or am too tired to go out, the computer and writing is all I have left.

I need to find an LLMD that I can afford, and get back to a treatment plan. Trying to stay active, and positive is becoming impossible. My heart goes out to all of the others who are suffering with this horrible disease. Stay strong!