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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.

 

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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.

 

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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.

Surgery

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

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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,

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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!

Today’s post…

Months ago, after being diagnosed with Lyme, and having way too much time on my hands, I began writing what I thought would be a book about my journey. I had grand ideas of getting it published, and inspiring others by sharing my story. At the time, I had no idea what I was in for at the hands of this disease. Needless to say, it has not been easy.

I have had good days, and bad, felt hopeful, only to be disappointed, questioned my sanity, and that of many doctors, swallowed hundreds of pills, and taken a variety of supplements. I have pushed antibiotics through my veins via an IV line, perused an unhealthy amount of websites detailing all aspects of this disease,  taken the Lyme Disease Challenge, and signed petitions for change. I have witnessed the joys and sorrows of my fellow Lyme warriors, as they too battle, and felt sadness when one of us succumbs to it’s overwhelming hold.

Many people say that they have had to distance themselves from posting to Lyme groups, and talking about it in general. They feel that allowing Lyme to take up residence in their lives is unhealthy for them, and they focus on the positive aspects of their lives. I can understand this, and applaud their ability to do so, but I am of the “know your enemy” school of thought. I want to know everything I can about this disease. I want to make people aware of the dangers of it. I want to kick it’s ass.

In the meantime, I keep myself busy. I write here in this blog, update my website, create graphics, and jot down my experiences in my “book”. I make a good attempt at living my life as normally as I can, but there are days when the pain, brain fog, and fatigue make it impossible. It isn’t easy, but I won’t give up.

On days when I can concentrate long enough to write, I also spend a lot of time reading the stories of others. They are inspiring, humorous, and I can relate to many of their experiences. It helps to know I am not alone.

If you would like to read my story, you can find it in progress HERE. I have decided to share it freely, as this seems the right thing to do.

For the basics, check out my ABOUT page.

and as always, keep-calm-and-fight-lyme-8

Why I am fine with Caitlyn Jenner.

Years ago, and still perhaps today, children born with Down syndrome, or other birth defects were considered weak, sick, mentally unstable, or possessed by some evil. We now know this to be untrue. Science has given us the information we needed to explain why these defects occur.

I bring this up only because of what I have seen posted in social media lately regarding Caitlyn Jenner, and how disgusting or sinful her transformation is.

Caitlyn most likely grew up feeling different. Feeling as if something was wrong with her body or her mind. She most likely struggled with this internal fight her whole life. She was born male, and therefore raised as a male. We are all raised according to our genitalia…are we not?

We seem to forget however, that many things can happen that will affect how we develop.

It seems no more odd to me to be born with male genitalia if you are female, than it is to be born with an extra toe, or downs syndrome.

People need to be more aware of the science, and less phobic of things they do not understand.

When we are conceived, we begin to grow, and become the product of the information stored in our DNA. Our DNA is carried inside our chromosomes. Chromosomes are thread-like structures located inside the nucleus of animal and plant cells. Each chromosome is made of protein and a single molecule of deoxyribonucleic acid (DNA). Passed from parents to offspring, DNA contains the specific instructions that make each type of living creature unique.

Our DNA gives us our eye color, height, body structure, hair color, and other genetics we inherit from our ancestors, such as mutations which can lead to increased risk of heart disease.

At conception, gender is determined by chromosome characteristics – and it will be the male (or rather the male’s sperm) that dictates whether the baby will be a boy or a girl.

Prior to conception, the unfertilized egg carries an X chromosome while the sperm can carry either an X or a Y chromosome. The gender of the baby comes down to one simple event:

If the sperm carrying an X chromosome fertilizes the egg, a girl will be conceived.

If the sperm carrying a Y chromosome fertilizes the egg, a boy will be conceived.

This all seems very simple, but in reality it is not. Especially if there is a chromosomal defect.

Each person has 23 pairs of chromosomes, or 46 in all. For each pair, you get one chromosome from your mother and one chromosome from your father.

About 1 in 150 babies is born with a chromosomal condition. Down syndrome is an example of a chromosomal condition. Because chromosomes and genes are so closely related, chromosomal conditions are also called genetic conditions.

Chromosomal conditions are caused by two kinds of changes in chromosomes:

Changes in the number of chromosomes—This means you have too many or too few chromosomes.

Changes in the structure of chromosomes—This means that part of a chromosome may be missing, repeated or rearranged.

Both kinds of changes can be inherited. This means they’re passed from parent to child. Or they can happen randomly as cells develop.

So there you have it…

This is science people, plain and simple, and easily proven. These people are not evil, sick, mentally ill, or sinners. Get back to the 21st century.

Powassan, Bourbon, and Lyme….oh my!

In the last few months, I have noticed some diversionary (and scare) tactics being employed by the media, regarding the Powassan, and Bourbon viruses, and would like to share some facts with you.

The Powassan virus:

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. Many people who become infected with Powassan virus do not develop any symptoms. Powassan virus can cause encephalitis (inflammation of the brain) and meningitis (inflammation of the membranes that surround the brain and spinal cord). Symptoms can include fever, headache, vomiting, weakness, confusion, loss of coordination, speech difficulties and seizures.  Diagnosis is based on a combination of signs and symptoms and laboratory tests of blood or spinal fluid. These tests typically detect antibodies that the immune system makes against the viral infection. There is no treatment or cure for this virus. Supportive measures are used to treat symptoms. About 10% of cases are fatal.

The Bourbon virus:

There have only been 2 cases of the Bourbon virus (genus Thogotovirus) confirmed to date in the United States since 2014, with one death. There have only been 9 confirmed cases of this genus type worldwide to date. The Bourbon virus is an RNA virus this means that the virus uses ribonucleic acid as it’s genetic material. Other RNA viruses include: Ebola hemorrhoragic fever, SARS, influenza, hepatitis C, West Nile virus, polio, and measles. There is no treatment, vaccine, or cure for this virus, and supportive measures are used to treat symptoms. Symptoms include: high fever, headache, decreased appetite, muscle aches, joint pain, fatigue, malaise,nausea, vomiting, and diarrhea.

There is no denying that these viruses could be deadly, but with the low instance of infection, I feel that the media has a hand in creating an unnecessary panic.

Lyme Disease:

Lyme disease is one of the fastest growing infectious diseases in the US and Western Europe. In 2013, the Centers for Disease Control and Prevention (CDC) revised their estimates, indicating that more than 300,000 new cases were contracted each year in the US, an increase of up to 10 times what was previously believed.

annual-cases-lyme-disease-us

Over 4 million cases have been confirmed since 1982.

Between 440,000, and 880,000 patients, have continued symptoms after treatment. (Post Treatment Lyme Disease.)

estimated-cases-ptld-us

Currently, Lyme testing misses approximately 60% of cases. This results in misdiagnosis, and improper treatment, which in turn can lead to long term illness and death.

Although thought only to be transmitted by a tick bite, some information suggests that also be transmitted sexually, in utero, and through blood transfusions. (The red cross does not screen for Lyme or co-infections.)

There are many co-infections that can also be transmitted through that tick bite, including, Babesia, Bartonella, and Anaplasmosis. Each of these may need to be treated individually.

To make my point, and keep this short, I would suggest that we concern ourselves more with educating the public, and our health care professionals about Lyme disease, and prevention. We should also be demanding that more money is put into research, and development of treatments. This is a pandemic affecting millions worldwide. Do not be fooled by the panic inducing media, and ask yourself why they are not shouting from the rooftops about the dangers of this disease.

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The Lyme Disease Challenge (Featured site)

“The “Take a Bite Out of Lyme Disease” Challenge kicked off in March 2015, and is ongoing. This challenge is both fun AND important.”

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I am sure you have seen countless images of folks biting limes all over the internet, and social media. This is all for a good cause: Lyme disease Awareness, and funding for research to better diagnose and treat Lyme.

Are you in? Great! Then follow the three easy steps below and donate $10. Prefer not to take the bite? That’s okay too! Donate $100 instead. All donations accepted by ILADEF (International Lyme and Associated Diseases Society’s 501(c)(3) non-profit educational fund).

1. TAKE A BITE: Bite a lime and TAKE A PHOTO OR A  SHORT VIDEO of the act – the more sourpuss your face, the better (and funnier!).

2. SHARE A FACT: State ONE BRIEF FACT ABOUT LYME DISEASE, such as the facts provided below. You can say them in your video, write them on your photo, or include them in your post. Help us spread the true facts about Lyme Disease!

3. PASS IT ON: Keep the campaign going — CHALLENGE THREE OTHER PEOPLE – your friends, family, whomever! – to take a bite! Mention them in your video or if you do a photo tag them in your post.

Please visit: http://lymediseasechallenge.org/ to take the challenge!

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A new day. A new plan.

After yesterday’s visit with the chiropractor, and contemplating my new detox plan, I had a good nights rest. I woke up early, and although, I was still achy, my legs felt a bit better. (Maybe the adjustment helped?) There is no real sense in putting off till tomorrow what you can do today, if you are able, and I felt that I was. So, after my morning coffee, (yes, coffee is my cheat) I got myself dressed, and headed out for a walk to the store.

walk

The store is about .5 miles away one way. It’s a beautiful day, and quiet in town, so I just walked and enjoyed the air, the birds chirping, and relaxed.  My mission was to pick up something for lunch that fit into my detox and healthy eating plan.

My plan is to cut out sugar, gluten, and processed foods. I was craving salad, but knew that I needed some protein in there…I love meat. I was thinking chicken, but didn’t want something I had to cook…look what I found:

perdue

I got the Olive oil and Rosemary flavor. Fully cooked. It is Gluten Free, No abx, No GMO, No MSG. 0 carbs 0 Trans Fats, No preservatives.  I am always skeptical, so I took a bite…they are yummy!!! I could eat the whole bag. Paid $3.00 on sale, reg is: $4.99, but I can get 3 meals out of it, so that works for me.

So a nice grilled chicken salad it is! Romaine, carrots, red cabbage, baby spinach, oil, & Vinegar.

salad

I am excited to feel better. I am thankful to have found a doc that is supportive, and understanding. I may be taking an unconventional route, but it feels like the right thing to do…so I’m going for it. 🙂

Snap, crack, and pop…my trip to the chiropractor.

In my quest to improve my health, and maybe get back to working, I made an appointment with a chiropractor. I am hoping to alleviate pain in a few major spots and hopefully this will make daily like, and movement easier. It was another out of pocket cost, as this office did not accept my insurance, but I feel so far, it was well worth it. I am still looking for an LLMD, but at this stage, I am unable to afford one. The doctor looked over all of my x-rays, and informed me that I have an extra vertebrae in my back (L6*) and fused vertebrae with bone spurs in my neck. (a lot of inflammation and arthritis throughout)

*This extra vertebra, known as the L6, is called a transitional vertebra. About 10 percent of adults have some form of spinal abnormality caused by genetics, and a sixth lumbar vertebra is among the most common of these abnormalities.

I had never been to a chiropractor before…actually I was a bit apprehensive. The thought of having myself adjusted gave me the willies…lol. It actually wasn’t that bad once I relaxed, but the snapping, cracking and popping was a bit unnerving.

This doc was very easy going, and explained everything well. He is also going to look at my blood work because he feels there might be something else going on aside from the Lyme. (Yes he understands Lyme, and didn’t poo poo it. 🙂 )  We also talked about detoxification of my body.( Through diet, etc.) His office also does acupuncture, and he is adding an ND to the practice soon.  I am very excited about this considering a lot of this can be used in Lyme treatment. (Without all of the antibiotics) So off we go….hopefully I will be feeling better soon. I still have a lot of my detox stuff, and probiotics, so I can start up again. I’m excited about this new course of treatment.

hangin

Lyme Lives Matter

Due to the fact that my LLNP moved, and the LLMD I saw to replace her said there was nothing he could do for me, and sent me away, I have been off all Lyme meds for 32 days.

While I was on meds, the last being 2 months of IV Rocephin, I didn’t feel much better. Or so I thought… I was aware that some symptoms had lessened, but it wasn’t until going off all medications that I realized how much they were actually helping me.

It has been 32 days, and I am painfully aware of the time passing. I am back to square one in my search for a doctor who believes Lyme exists, and will treat me. It is an uphill battle. My symptoms continue to worsen.

I do not have it as badly as some. Many are bedridden, seizure prone, unable to walk, and close to death. All because they cannot find or afford proper treatment.

Something has to change. With upwards of 300,000 new cases of Lyme each year, this disease is slowly eating away at our population. Not only is it devastating our lives, but it is taking it’s toll on our economy as well. If we are unable to work, our only options are welfare, and Social Security Disability (If you can get it.)

If we are no longer working, or have limited funds, and have minimal insurance or none at all, where are we to turn for treatment that we can afford? Many people are opting to self treat. Although this might work for some, (or so they say) I feel that it is risky, especially with the hundreds of “plans” out there to try. Refer to my Snake oil post.

What do we need? Science, research, and perseverance. It has been more than 40 years since Lyme was “discovered”. The tests for Lyme, and co-infections are inaccurate, and miss the majority of cases. The treatment guidelines (IDSA’s recommendations) are in serious need of revision. They do not work, and are leading to chronic, and deadly infections. These guidelines also lend themselves to the persecution of physicians who are knowledgeable about Lyme and are willing to treat it. Another aspect of our Lyme problems, is funding for research, and development of new treatments, tests, and possible cures. The government is not by any means devoting enough funds to Lyme, and tick borne disease research.

The numbers are there, if you take time to sort through the internet. I will spare you the statistics.

What can we do?  We can petition our congressmen, senators, and local leaders. We can organize events to promote awareness, and donate funds to ILADS. We can wear ribbons, post signs, and in general, make a nuisance of ourselves…we can be heard, and we can all help, even if it is just a little. A whisper may not be heard, but a thousand whispers will become a roar. Let the world know that Lyme Lives Matter!

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Memorial Day

This blog is about Lyme, but on occasion, when I feel deeply about a subject, I may go off topic. This is one of those occasions.

Society as a whole seems to have forgotten the meanings behind a lot of our national holidays, and these days they tend to only be seen as a day off from work, a reason to give gifts, or an excuse to have a BBQ.

Not that we shouldn’t BBQ, and have a day off, but we should always take a minute, or more to think about why the day is a holiday.

Today is Memorial Day. It is a day on which we should remember all of the brave men, and women who have fought, and died in service of our country. They are the reason we have our constitution, and our freedoms.

They signed up knowing full well what they were walking into, and away from. They were courageous, selfless human beings. They left behind their families, and friends. They did not return.

Today is a day set aside to remember them, honor them, and thank them. Please take a moment today to do so.

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think“All gave some, some gave all.”  #RemembertheFallen

PICCs & Ports

When conventional methods do not send Lyme & Co. running into remission, your doctor may suggest a course of IV antibiotics. Don’t freak out! It’s not as bad as it sounds, and many have felt better after treatment.

First, let’s talk about PICC lines. I just recently had mine taken out, so I can give a good description of what it was like for me.

A peripherally inserted central catheter (PICC or PIC line) is a form of intravenous access that can be used for a prolonged period of time (e.g. for long chemotherapy regimens, or extended antibiotic therapy.)

Blausen_0193_Catheter_PICC

My PICC line was inserted at my local hospital, with the aid of Xray to ensure proper placement. I was given a local anesthetic, near the insertion site, and the procedure was relatively painless. The line was then sutured in place at the insertion site, bandaged, and an external catheter was added. (long enough so I could reach it to administer my daily meds.)

I was kept at the hospital for my first dose of meds, (Rocephin) to ensure I did not have an adverse reaction. The whole thing, start to finish, was approx. 2 hrs.

I had set up an visiting nurse to change my dressing each week, and draw blood, and had a supply/med delivery each week. This was done through Walgreens Infusion. They were awesome. When my insurance would no longer pay for the Nurse through Walgreens, I used my local VNS. They were even better. 🙂

The area around the insertion site may be sore and puffy for about a week. If there is any real swelling, bleeding, or discomfort, you should call your doctor. It is a good idea to use a PICC line cover, and keep the site dry.  In the shower, I used plastic wrap and medical tape to create my own waterproof dressing cover. There are many types of line covers available online. They come in lots of colors and styles.

Once I got used to it, I found the PICC to be very easy to live with. Administering my own meds was a breeze.


Ports

A port-a-cath is an IV (intravenous) catheter that is placed under the skin in a patient who requires frequent administration of chemotherapy, blood transfusions, antibiotics, intravenous feeding, or blood draws. It is a central IV line, meaning that the catheter is threaded into one of the large central veins in the chest, which empties into the heart.

The catheters are placed by an interventional radiologist or surgeon, under local anesthetic, using ultrasound to guide the catheter into the vein. The entire port-a-cath is inside the body, so that bathing and swimming are not affected. The port feels like a little bump under the skin, about the size of a quarter.

portacath

Your caregiver may show you or a family member how to access (enter) your port with a non-coring needle. Never try to use your port without proper training from a caregiver.

I have never had a port, however, friends have mentioned they were very happy with theirs. Being able to swim an bathe without worry would be a bonus for me.

As with any line, if there are any signs of infection, swelling, or pain, call your doctor!


The Lyme community is full of wonderful people. One group of very special student-entrepreneurs, has been working on a project that will soon bring an ingenious PICC line cover design into production. I have seen the design, and it is fabulous. Please check them out!  HERE

PICC line covers
PICC Perfect: PICC line covers

The Pillow Fort – (featured site)

A great site for young people with chronic illness.

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Everyone can benefit from a sense of community when suffering with a chronic illness. 

We know that having a chronic illness sucks, big time. But we also know (whether we want to admit it or not) that wallowing in it just doesn’t help either.

Enter The Pillow Fort! Our one mission?

To make chronic illness suck less for young people!

http://thepillowfort.co.uk/

Lyme Potion # 9…

Sing it with me…if you are old enough to remember it…lol1alyme9

Lyme Potion #9

I took my troubles down to Doctor Rue
You know that MD with the gold-capped tooth
He’s got a pad down on Thirty-Fourth and Vine
Sellin’ little bottles of Lyme Potion Number Nine

I told him that I was covered with ticks
I’ve been this way since 1976
He looked at my rash and he made an awful sigh
He said “What you need is Lyme Potion Number Nine”

He bent down and turned around and gave me a grin
He said “I’m gonna mix it up right here in this tin”
It smelled like day old beer, but tasted more like gin
I held my nose, I closed my eyes, I took it in

I didn’t know if it was day or night
I started feeling every pain and fright
But when I told a cop down on Thirty-Fourth and Vine
He broke my little bottle of Lyme Potion Number Nine

I held my nose, I closed my eyes, I took it in

I didn’t know if it was day or night
I started feeling every pain and fright
But when I told a cop down on Thirty-Fourth and Vine
He broke my little bottle of Lyme Potion Number Nine
LymePotion Number Nine
Lyme Potion Number Nine
Lyme Potion Number Nine

My apologies to “The Searchers” for defiling their Lyrics.

LB, LNB, OCD, ADD, ADHD, and FS… LOL

Even before the Lyme, (no idea how long I have had it, but that’s another story…) I had always been a bit  (my BF will say more than a bit) OCD, and admittedly am afflicted with ADD/ADHD as well. This is not the best combo for any person, but it has in the past helped me to excel at work. I could multitask like a mad woman, and always had my  i’s dotted and t’s crossed. Anything that needed to be done slowly, or took too much time, I would often get bored with. (School…UGH!) I was always moving, even while sitting, something would be moving…a foot, a leg, twirling hair, whatever….my brain was always going 90 miles an hour.

Enter Lyme…

It came on slowly…at first, I had a body that could no longer keep up with it’s brain(LB). Then, it all changed.  I could no longer concentrate. I was at a loss or words, or mixed them up. I would space-out (like daydreaming with no dream). My head felt like it was full of mud. Thick, boggy, mud (LNB). This was not a good feeling. Not a way for a normally hyper-active person to live. I couldn’t do anything. I was stuck at home…indoors…alone….

I needed to do something, anything…on good days, my computer was my best friend. There was always something to do online…read/write a blog, build a website, make some CG art…

On bad days, I couldn’t even look at the computer, or a book. The only thing that kept me reasonably entertained was Netflix….This eventually lead to another condition:

1flix

This condition is not rare.  We Lymies tend to have sleep disorders, and I have found this condition, (I will call it FS) to be increasing in severity among us.  Early signs tend to be binge watching a movie or two. As the condition worsens, binge watching may increase to a whole season of a TV show, or a series of movies. The final stage is characterized by dark circles under the eyes, inability to remember what day it is, suspicious popcorn laden bed linens, and blacking out. This usually occurs when an entire 5 seasons of one show is viewed continuously. Another symptom of FS is a violent outburst at the sight of the following:

“Are you still watching Netflix?”

This condition is not fatal. It can be cured with self control, or in extreme cases, cancellation of your Netflix subscription….but let’s not be too hasty.

We need to laugh, cry, and root for the hero’s….it will keep us sane.

Hope you enjoyed this.

FS sufferers UNITE!!

netflix-LOGO

The Lyme Pandemic (It’s everywhere)

Many people (doctors included) believe that Lyme disease is only found in the United States, or certain regions of the United States. I can only assume this is their belief because they do not want to (or are not permitted to) see the truth.

The CDC has reported that there are approximately 300,000 new cases of Lyme disease each year in the U.S. alone.  They do not report on it’s prevalence worldwide.  Fortunately, we can use the internet to glean more information.

Let’s take a trip around the world:

The UK: Lyme disease is less common in the UK. 998 possible cases were reported in 2012 in England and Wales. Not all are reported so the total number of cases each year is unknown. However, it is estimated to be 2,000 to 3,000.

Canada:  The Government currently has data for Lyme disease cases reported between 2009 and 2013:

  • 2009: 128 cases
  • 2010: 132 cases
  • 2011: 258 cases
  • 2012: 315 cases
  • 2013: 682 cases
  • 2014: currently validating reports from provinces and territories

These numbers may change slightly should updated information come in from provincial or territorial public health organizations.

The true number of cases is expected to be higher, as cases are captured only if acquired in known endemic areas. Health care professionals in Canada have a critical role to play in identifying confirmed and probable cases of Lyme disease.

Australia:  The exact number of people with Lyme disease in Australia is not known because our public health officials do not collect statistics about it. To change this situation, the Lyme Disease Association of Australia (LDAA) started to collect bi-annual statistics about the number of Australians with Lyme disease and their experiences in 2011. Full statistics are included in our patient survey reports. The reality of the Australian situation is plotted in our maps below.  SEE MAPS

Africa: (Senegal & region) From 1990 to 2003, researchers with the IRD studying malaria in the village of Dielmo in the Sine Saloum region of Senegal, took advantage of the resources available to them to also look into the prevalence of Lyme disease.

The results of their 14-year study showed that between 4 and 25 percent of the population presented cases of the tick fever, with an average rate of incidence of 11 percent per year. Other studies conducted in rural parts of Senegal, Mali and Mauritania confirmed these results.
“It’s a significant rate of incidence for a sickness that affects all age groups, Only malaria and the flu are as frequent, and we estimate that, like other endemic sicknesses, Lyme disease is a serious public health problem.”

In Senegal, ticks are present in two-thirds of the country, reaching as far south as the border with The Gambia.

South Africa (from pubmed report) “The sporadic nature of LD Incidence in South Africa may either reflect a restriction of research efforts or be a true indication of the epidemiology of the disease. This review lends support to the former hypothesis. The low reported incidence of LD in South Africa is probably due to a lack of awareness and research effort.” Read

Everywhere:

Lyme disease is extremely common in Europe, in fact it is much more prevalent compared with the United States and Canada. The highest prevalence has been found in the Czeck Republic, followed by Germany, Finland, Estonia, Belgium, Bulgaria, France, Slovakia, Poland, Hungary, Norway, Scotland and Britain.

Central and South America are also affected by Lyme disease. In South America, tick-borne diseases reports are growing. In some areas of the Caribbean Islands, Colombia, Bolivia, Mexico, Chile, Brazil, Argentina, Costa Rica have reported isolated, yet, increasing numbers of cases of Lyme disease.

Most cases of Lyme disease in Asia are found in Japan, followed by Northwest China and far eastern Russia and Mongolia. Some cases have been diagnosed in Taiwan, Korea and India as well.

In conclusion, Lyme disease has no borders and its incidence is increasing worldwide.

We need to spread awareness, educate ourselves, and our health care professionals.

This is a true PANDEMIC!

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Don’t talk…just listen.

One of my pet peeves is things that people who are not sick say to us.

My least favorite is “…but you don’t look sick!”  It may be true, many of us do not, but anyone who truly knows us, and pays attention, can see quite plainly that we are.

We may walk slower, smile less, lose weight, gain weight, miss work, lose interest in things we loved, socialize less, if at all, sleep more, or less depending on our conditions, and chances are when you see us, we are putting up a good front, just to appear normal.

Aside from our physical ailments, we may also be suffering emotionally due to personal issues, such as loved ones (and doctors) denying the existence of our condition, broken marriages, financial strain, homelessness, and job loss, among other things.

Being chronically ill is not easy. Not only are we being attacked by a disease, but by the world around us.

Other phrases too often used are:

“You should really exercise more.”

“Have you tried changing your diet?”

“You should get rid of your pets.”

“You need to get out, and get some fresh air.”

“Maybe you have_______.”

“Stop being lazy. You can work.”

“It’s all in your head.”

UGH!!! I want to scream.

So please…

If you are a person who has a loved one, friend or child with a chronic illness, please be patient, and compassionate.  If you don’t understand the person’s illness, make it a point to learn more.

Unfortunately,

I have come to believe that there are some who resent, or are jealous of us because we are ill. I have witnessed it, and seen it described  in many groups and blogs. I don’t know why anyone would think that we would choose to be home bound, in constant pain, and have our lives in shambles. It is not fun. It is not like being on vacation. They say we are lazy, self centered, and call us hypochondriacs. In some cases, they even prevent their loved ones from receiving proper care.  (In these instances, they are the ones that need a good shrink.)  FYI, this is abuse, plain and simple. Don’t let it happen to you.

So…that being said,

Don’t talk, just listen. Be supportive, and caring, and as understanding as you can be. If you see us struggling, lend a hand.

Remember, you could be next. You could wake up tomorrow with a nagging pain, and 6 months later be incapacitated.  The last thing you want is to become ill and have me tell you “I told you so.”

Quotes from the warriors…

You are not alone!

During my journey from diagnosis, to treatment, I have joined many groups, and read through countless blogs, tweets, and websites of others who suffer with Lyme, and other chronic illnesses. There are many things we have in common: Frustration, hopelessness, lack of support, or acknowledgement of our illness, poverty, abandonment, pain, stress, confusion, and depression, to name a few. On the brighter side, I have seen many who somehow find the will to go on despite the above, and are always there to encourage others. You may not see it, but we are a community, and we have a common enemy: Our illness. The following are real quotes, from real people. I am not naming names, but I am sure you will find we have a lot in common.

“I am pretty sure I am dying. I feel so alone.” – J

“Today is one of those days where I wish I had a wheelchair or a scooter at work. I hurt all over and I am so tired.” – L

“Is anyone else afraid of getting bit again and getting Lyme worse?” – K

“I have not felt good for years. I have had numerous tests run and no real answers.” – D

“So I have 19 year old twins and an 11yr old. All 4 of us have Lyme.” – J

“Please tell me that people do get better….that it is possible to beat this.” – R

“I’ve been wondering about this and finally thought to ask. Why is it that the traditional medicine industry won’t believe in/treat lyme?” – H

I asked my doctor to do a blood test for Lyme and he looked at me like I had just slapped his mother.” – B

“I pray so hard they find a cure for this horrible disease !!!” – L

“Feel better , everyone.” – B

“I am forever indebted to my fellow Lyme Disease sufferers. You were the ones that assisted me in finding my life-saving treatment.” – A

“My memory has been really bad lately and it can be very scary. Finding words to make a complete sentence is also another issue I have which makes me feel very unintelligent.” – B

“You are stronger and more courageous than you may give yourself credit for…..” – B&C

“Where can I find an LLMD?” – (Almost everyone)

“My doctor prescribed Prozac!” – J

“Here’s a new one.. My boss called me a hypochondriac the other day.. If only she new what I am going through, in everyday life.” – P

I’m sure we can all relate to some or all of these quotes. Remember, you are not alone, you will get through this, and your fellow warriors are right beside you.

Lyme Warriors

Breaking News!! …

Snake oil, cures Lyme! (Yes you detect sarcasm here…)

Snake oil is an expression that originally referred to fraudulent health products or unproven medicine but has come to refer to any product with questionable or unverifiable quality or benefit. By extension, a snake oil salesman is someone who knowingly sells fraudulent goods or who is themselves a fraud, quack, charlatan, or the like.

The use of snake oil is far older than the 19th century, and it was never confined to the Americas. In Europe, viper oil had been commonly recommended for many afflictions, including the ones for which rattlesnake oil was subsequently favored (e.g., rheumatism and skin diseases)

YaquisSnakeOilAd

I have been so frustrated lately, I cannot begin to tell you. I have been off all meds now for 24 days.  All of my symptoms have returned with a vengeance, and some new ones are introducing themselves as we speak, please excuse my sarcasm, cynicism, and shitty mood.

During my Journey, I have seen: 2 clinic PA’s, 3 ER docs, 2 GP’s, 1 IDS, 1 Neurologist, 1 Rheumatologist, 1 LLNP, and 1 LLMD. My next appointment, is with a Chiropractor, who is looking over my x-ray, CT scan, and MRI history prior to my visit.  I am hoping against hope, that he can help at least the areas where pain is constant. (Neck, lower back, and shoulders) I cannot call the LLMD I want to get in touch with until 6/1, and my next PCP visit is on 6/18, but he is an IDS so I know I will get nowhere with him. So the Chiropractor it is…I’ll try anything at this point…well almost anything…

I don’t know about anyone else, but I have seen many treatment plans online, in blogs, and in communities, all saying how this or that cured them. (or at least put them into remission.) I find it hard to believe, and I am always skeptical when there is an large price tag attached to it. Many people with Lyme have been suffering for years. We all know how horrible, and debilitating this disease is, not to mention financially straining…why would we not, if we found a cure, give it away?? YES. GIVE IT AWAY. (at least a 3 month supply to see if it works) I know if I find one, I will, and you can hold me to that.

My expectation of finding one of course, is non-existent. Why? Because I don’t believe for one second that one thing, one pill one shot, or one diet will work for all of us.

Anyone with Lyme knows that we all have different symptoms, co-infections, and underlying (non related) conditions. We are of all ages, and have different DNA mutations. There is no way in hell that there is one cure or treatment that will work for all of us.

That being said…I think it is important, at least for me to try what I can, within my means. This is also another reason it is good to keep a journal.  For example, I know that since my PICC was discontinued, my symptoms have returned. This tells me something was working. Since another PICC is out of the question right now, I am going to try a chiropractor. I know what a chiropractor does, and in terms of cost, it is much less than the $1000.00  for an initial visit to an LLMD or LLND. If he can lessen, or alleviate my neck pain, for example, it may help me sleep, and reduce my headaches, which in turn, might help my fatigue. It is worth a try.

I am not trying to dissuade anyone from buying the online treatments, nor am I saying that they will not work. All I am saying, is be careful with your health. Do your research, and use common sense. Talk to your doctor or pharmacist before taking a bunch of supplements, or going on a fad diet. You don’t want to make matters worse. “All Natural” does not mean “safe”.

I am a Lymie, and I can tell you what my treatment protocol is, but it may not work for you, so if I am standing on a podium, touting a cure all….beware…

Snake Oil

Chronic Illness, crowd funding, and the human experience.

Many of us have seen the Gofundme links, and there are other websites out there as well that allow people to set up links to ask for help. I am sure that there are some of them set up for no good reason, other than to screw people out of money, but If you look through the sites, you will learn that many are legitimate.

People normally don’t like to beg. This is how these posts are seen. As begging. The online equivalent of sitting on the street with a tin can. Most people will walk by pretending not to notice the “bum” who needs to “get a job”.

So here we have pages made up for people who have tragically passed on, lost their homes and possessions in fires, or disasters, need surgery for their pets, or are battling an illness of their own.

Let’s talk about Illness. You may not be able to understand what people with chronic illness go through if you have never been chronically ill.

Cancer, MS, ALS, Fibromyalgia, EDS, POTS, Lyme Disease, Parkinsons, Mental illness, Autism, ADHD, PTSD, the list goes on and on…

Many people with chronic illness are able to work. Able to pay their bills, and keep their homes. Others are not so lucky.

Single mothers with no income, Families with only one spouse working, Families, or people with no insurance, or expenses not covered by insurance.

Most people don’t want to ask for money. They do it because they see no other choice. They have no other resource.

Until you walk in their shoes, do not judge them. Do not call them liars, or beggars. Do not tell them to get a job, and stop being lazy.

Instead, put yourself in their shoes, and either let them be, or donate 5 bucks.

That 5 bucks can mean a meal. Gas to get to the doctor, or a much needed prescription co-pay.

Help if you can. Believe in Karma. Be human, love thy neighbor, and judge not.

1help

Lyme Sucks…

…and I am beginning to hate doctors as well.

Back in March, my LLNP informed me that she was moving to another state. At the time I was beginning my second month of IV Rocephin. I was by no means well, but some symptoms had improved. I didn’t realize how much they had improved until she discontinued my IV on 4/21. Treatment would cease until I saw my new LLMD on 5/8. Well, after 4 days off of the IV, little by little my symptoms worsened. Joint pain, brain fog, tinnitus, headaches, the entire cast of characters returned.

On 5/8, I visited the new doctor. He came highly recommended, and accepted my insurance. Unfortunately, my previous NP had not sent him my blood test results, so I left there with no plan for treatment. I called the lab, and had them FAX the results to him. One week later, I get a call back…”The doctor says there is nothing he can do for you, you do not have Lyme, and you are not disabled in any way so he will not sign off on your paperwork.” – ARE YOU FREEKING KIDDING ME?????  So you are telling me that 2 Dr.’s, and 1 NP who have been treating me, and signing off on my short term disability are WRONG????? I am so pissed. Now I have no doctor, no meds, and no money. Lyme sucks.

To make matters worse, the symptoms are raging. I now need to start from scratch again. Most LLMD’s do not take insurance. Called one yesterday, and it would be $1075.00 for the first visit, and $500.00 for follow ups. It’s just crazy, who can afford this?

I have decided to try and raise the funds. First for an Igenex test for Lyme & Co’s, and also for Cost of LLMD visits.

So frustrated, and wondering why this has to be so hard…

Please help if you can.


 

 

 

 

Lyme Activists unite, and fight for change!

The Mayday Project

The Mayday Project was formed by a group of volunteers who have been touched by Lyme disease. Mayday advocates for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research.

For more information, visit http://www.themaydayproject.org

MAYDAYWashington, DC – WEBWIRE – Friday, May 01, 2015

For the second day, Lyme patients and supporters from around the U.S. gathered in Arlington, VA, at the Infectious Diseases Society of America (IDSA) headquarters, to call attention to the epidemic of chronic Lyme disease and to ask the question: Why does IDSA continue to fight with and vilify patients instead of producing guidelines that would enable those who are chronically ill to receive medically necessary treatment.

Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease . . . . The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease. -Kenneth Liegner, MD

Thank goodness for people like this who stand up for us, and increase awareness of our plight!

Chronic Lyme or Post treatment Lyme Disease Syndrome, how to treat?

The root of all debate…It depends on who you ask.

According to the CDC:

Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme Disease Syndrome” (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection.

In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research.Clinical studies are ongoing to determine the cause of PTLDS in humans.

Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications. The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months to feel completely well.

The IDSA (Infectious Disease Society of America) recommends the following in it’s treatment guidelines:

Early Lyme:  Doxycycline (100 mg twice per day), amoxicillin (500 mg 3 times per day), or cefuroxime axetil (500 mg twice per day) for 14 days (range, 10–21 days for doxycycline and 14–21 days for amoxicillin or cefuroxime axetil) is recommended for the treatment of adult patients with early localized or early disseminated Lyme disease.

Lyme meningitis and other manifestations of early neurologic Lyme disease. The use of ceftriaxone (2 g once per day intravenously for 14 days; range, 10–28 days)

Lyme carditis. Patients with atrioventricular heart block and/or myopericarditis associated with early Lyme disease may be treated with either oral or parenteral antibiotic therapy for 14 days (range, 14–21 days). Hospitalization and continuous monitoring are advisable for symptomatic patients.

Late Lyme Disease:

Lyme arthritis. Lyme arthritis can usually be treated successfully with antimicrobial agents administered orally. Doxycycline (100 mg twice per day) (B-I), amoxicillin (500 mg 3 times per day) (B-I), or cefuroxime axetil (500 mg twice per day) (B-III) for 28 days is recommended for adult patients without clinical evidence of neurologic disease.

Late neurologic Lyme disease. Adult patients with late neurologic disease affecting the central or peripheral nervous system should be treated with intravenous ceftriaxone for 2 to 4 weeks (B-II). Cefotaxime or penicillin G administered intravenously is an alternative (B-II). Response to treatment is usually slow and may be incomplete. Re-treatment is not recommended unless relapse is shown by reliable objective measures.


Everything is treated with 10-28 days of antibiotics…no muss no fuss…these guidelines are the reason your doctors, and insurance carriers don’t want anything to do with you and your pesky Lyme disease…they are also the reason why so many of us are still sick.

Even the doctors who treat Lyme are hard to find….go ahead. Google Lyme Doctor…all you will find are links to referral pages….now ask yourself why…It’s because the doctors who treat Lyme don’t follow the IDSA guidelines to the letter, and that pisses people (Insurance companies) off. Many of them have been prosecuted for not following these rules. Fortunately for us, many doctors do think out of the box, and will help us to regain our health even if it means bending the rules set forth by the IDSA.

Read More »

Do you have Lyme? – 9 out of 10 doctors say NO!

Diagnosing Lyme: ELISA, and Western Blot testing.

According to the CDC:

CDC currently recommends a two-step process when testing blood for evidence of antibodies against the Lyme disease bacteria.

The first step uses a testing procedure called “EIA” (enzyme immunoassay) or rarely, an “IFA” (indirect immunofluorescence assay). If this first step is negative, no further testing of the specimen is recommended. If the first step is positive or indeterminate (sometimes called “equivocal”), the second step should be performed. The second step uses a test called an immunoblot test, commonly, a “Western blot” test. Results are considered positive only if the EIA/IFA and the immunoblot are both positive.

The two steps of Lyme disease testing are designed to be done together. CDC does not recommend skipping the first test and just doing the Western blot. Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment.

New tests may be developed as alternatives to one or both steps of the two-step process. Before CDC will recommend new tests, their performance must be demonstrated to be equal to or better than the results of the existing procedure, and they must be FDA approved.

Is this the best way? Are the tests reliable?

Not according to ILADS (International Lyme and Associated Disease Society)

  • “The elisa screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.”
  • Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial western blot sampling. Antibody titers also appear to decline over time; thus while the western blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For “epidemiological purposes” the CDC eliminated from the western blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia Burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia Burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests.”

Read More »

It’s Lyme not Lymes.

Lyme is a town in New London County, Connecticut, United States.  Lyme and its neighboring town Old Lyme are the namesakes for Lyme disease.

Initially, Lyme was a component of the Saybrook (“Saye-Brooke”) settlement centered on the west bank of the mouth of the Connecticut River. It was established by the Earl of Warwick in 1631, occupied in 1635, and settled and named in 1636. The lands on the east bank of the river, named after Lyme Regis in England, were formally set off from the parent colony on February 13, 1665, in a document called “The Loving Parting.” The Connecticut General Court named the new plantation “Lyme” on May 9, 1667.

The Town of Lyme retains its rural history, and has a population just over 2,000 within its 30 square miles. Its qualities and characteristics include a number of historically distinct areas. The town has two small commercial centers at Hamburg Cove and Hadlyme; the municipal and educational center is on Hamburg Road, Route 156. Lyme is the home of a celebrated state park, “Gillette Castle,” and the classic summertime Hamburg Fair, and has its own Fourth of July parade which celebrates our local history as well as that of the nation.

Remember: It’s Lyme not Lymes!!!

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gilette_castle_sign

side-view-of-castle

In the early 1970s a group of children and adults in Lyme, Connecticut, and the surrounding areas were suffering from some puzzling and debilitating health issues. Their symptoms included swollen knees, paralysis, skin rashes, headaches, and severe chronic fatigue. Visits with doctors and hospital stays had become all too common.

These families were left undiagnosed and untreated for years during the 1960s and 70s. If it wasn’t for the persistence of two mothers from this group in Connecticut, Lyme disease might still be little-known even today. These patient advocates began to take notes, conduct their own research, and contact scientists.

The medical establishment began to study the group’s symptoms and looked for several possible causes.  The families had reported skin rashes followed very quickly by arthritic conditions, and they had all recalled being bitten by a tick.

By the mid-70s, researchers had named this new disease Lyme Disease.