Don't think that if you were tested and it didn't show up,..that you DON"T have Lyme. The tests are notoriously bad, maybe only 60% accurate

IF they do the best test.

Hard to test, and hard to treat but it CAN be treated,

With COVID,..its not getting just respect,..BTW 60 minutes did a story on "healed" COVID people that they are now called "The Long Haulers" interesting the symptoms are very much the same, it seems like the bodies response to chronic infections, even though Lyme is a type of bacterial and COVID is a type of virus!

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What is Lyme Disease?

Whenever I meet someone who does not know my journey of fighting to regain my health I find that a common conversation takes place. It doesn't matter if this person is a random stranger, a new doctor, a new hospital emergency room nurse, a lady standing in line at the county clerks office as I applied for the disability tag five years ago, my former boss, a former co-worker, a distant cousin that I haven't seen in a long time, the cute guy flirting with me on the plane as I traveled to California to my medical team, or the adorable firefighter that came to save our neighborhood three years ago. I receive a sympathetic nod or a sweet comment of encouragement when they hear that I dealt with skin Cancer several years ago, but when I mention Lyme Disease they look at me bewildered or with a confused look.

They hesitate... and then the questions start.

"Is that what happens when you get bit by a tick?" they ask.

"Yes" I answer.

"When did that happen?" they ask.

"2007. May 19, 2007 to be exact." I reply.

"Not to be rude or anything but you know that you can just go to the doctors and get antibiotics for that." They state.

"Yes, I am aware of that." I reply.

"Did you get the bulls eye rash? You just need to go get medicine and get better" they state (most of them very kindly, a few a little sarcastically, and one who accused me of "simply making it up to get attention").

"No seriously, if you had the rash you should go get medicine. My ___________(insert some long lost family member's sisters friends cousin's name here) had Lyme and they got better in a few days...maybe a week at most. Why are you waiting?" They state more insistently. I hesitate and then with a quiet sigh my reply comes.

"I was bit by a tick on May 19th, 2007 hiking in Great Falls, Virginia. I remember the date exactly because my ex-finance and I talked about marriage that day. The next day as I was training for a 1/2 marathon I noticed the bulls eye rash on my upper right arm. I received medication (yes, I finished the full dosage) and was seen at John Hopkins University Hospital Lyme Center. After completing the medication I was declared "Lyme free". Except I wasn't..." I calmly reply.

Absolutely silent they look at me. And some say what I am sure everyone is thinking... "So what the heck is Lyme Disease and how in the world is this making you so ill?"

To be frank it is a question that I have asked myself thousands of times as I approach the 13 year anniversary of contracting Lyme. While my health slowly declined over the course of 5 years until I became bedridden and housebound before obtaining proper treatment, the reality is that the past decade has been spent dealing with Lyme and its ramifications on my body. After 7 years intensely fighting this disease you would think that I would be an expert in sharing a quick and succinct version of what Lyme disease is, but the truth is that the answer is just as complicated as the disease itself.

And it is a growing and widespread epidemic...

At a recent Lyme Disease conference it was stated that "Lyme Disease is the growing epidemic and health crisis of the 21st century" and that "in the fullness of time the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine."

Lyme Disease is contracted by a tick bite that has been infected and then infects the person that it has bitten. While a bulls eye rash is common in most cases, in recent years there are more and more cases that occur with the person never seeing a bulls eye rash. In addition to this in there are now numerous scientific studies that have shown that in addition to a tick transferring Lyme you can also contract Lyme through being bit by a mosquito, flies, fleas, etc.

property of Lyme Disease pictures

Lyme Disease is considered (by most doctors- some would disagree) an infections Disease with the bacteria in Lyme called "Borelia Burgdorferi". The Lyme bacteria is unique in its shape (it has a spiral shape) and unlike most diseases it is able to burrow into not only into the blood stream but into vital organs, muscles throughout the body, the nervous system, and body tissue. (In addition to this studies coming out of Europe have proven that Lyme has the potential to drill into bones.) Due to the unique shape and properties of the Boreilia Burgdorferi Lyme has the ability to literally infect the entire body and travel throughout the blood stream (doing incredible damage to the organs and the cells that it connects with in its way). Over time Lyme also has the ability and capability of surrounding cells, killing them, and creating a "wall" that prevents antibiotics to "break" the barriers. In addition to this the bacteria commonly makes cysts that are also difficult for antibiotics to touch.

property of Lyme Disease pictures

Due to these reasons a person with Lyme (whether mis-diagnosed, mis-treated, or not caught at the time of infection) can suffer for decades before being diagnosed and can suffer a confusing and wide array of symptoms that might or might not look like other "lymies" fighting the same battle.

Lyme is considered the "Great Imitator" and is known to imitate over four hundred different diseases including CFS/ME (Chronic Fatigue Syndrome), Fibromyalgia, IBS, Lupus, MS, Autoimmune Disorders, Alzheimer's, ALS, Migraines, Depression, Meningitis, Lou Gehrig's Disease, and hundreds of others.

Patients in "late stage or chronic stage" Lyme Disease are fighting a complicated and complex battle as many (including myself) are fighting not just the Lyme but co-infections, additional diagnosis', and issues that have occurred due to the fact that Lyme has waged war on their bodies. Due to the fact that the bacteria from Lyme Disease can not only travel but multiply patients are dealing with multiple issues and symptoms. The bacteria with Lyme Disease does not like the fight and will literally "fight back" which causes a "herxheimer reaction" that can be worse than the disease itself. Due to this the "horror stories" (as the news has sometimes labeled it) are true, as some patients have died and many patients end up in the hospital and are fighting for their lives.

The symptoms of Lyme Disease vary but most people struggle from many of the following symptoms: debilitating fatigue, heart issues, heart palpitations, arthritis, facial numbness, blood pressure problems, extreme pain, autoimmune disorders, malnutrition, hair loss, vision problems, skin issues, rashes, panic attacks, adrenal failure (or fatigue), memory issues, food allergies, unexplained allergic reactions, insomnia, inability to absorb vitamins and nutrition, hormonal issues, circulation issues, dizziness, seizures, body numbness, blindness, migraines, paralysis in extremities, heart attacks, inability to handle temperature change, lung function, shortness of breath, menstrual issues, and the list goes on and on and on. I have just listed a few but here are hundreds more.

In addition to the physical aspects of fighting Lyme Disease patients are in for the FIGHT of their life not only physically but mentally, financially, and emotionally too. Most Lyme Disease patients have seen dozens of doctors (I personally saw 273-including some of the top hospitals throughout the US-before I was correctly diagnosed) and after the diagnosis can introduce the most difficult battle that is never expected.

Lyme Disease patients are warriors as they have had to push through hundreds of "all knowledgeable doctors" stating that it is "in their heads" or "they just need some meds". (I had a specialist in 2013 -after we had spent 4 hours in a snowstorm to get to his office-tell my mother (in front of me) that she was "enabling" me to continue to set a "destructive pattern" of desiring attention and that "absolutely" nothing was wrong with me. Within two months of seeing this doctor I not only had been correctly diagnosed with Lyme Disease, but aggressive skin cancer, and several other illnesses.)

Finding a doctor who is willing to treat a Lyme Disease patient long term is also another battle. Due to arguments with insurance companies, Congress, and medical limitations it is extremely difficult to find a qualified and competent doctor. This takes hours and hours and hours of research and it still doesn't guarantee you an appointment. Mentally this is absolutely exhausting for patients. And after the appointment that you have hopefully gotten there is still the treatment to fight through.

And both of these things cost an extreme amount of money.

Money that most patients (like myself) did "OK" with for the first several years of wandering the long trail of finding correct answers. But after that time period (and for some it is a much shorter time frame) money is not something that just continues to "come in". It has been spent (wisely, I would like to clarify) on finding answers, traveling to doctors across the country, treating one or two mis-diagnosis', and on numerous treatments (most alternative so insurance does not cover it). ALL of these things add up to thousands and thousands of dollars.

Like myself, most Lyme Disease patients are not able to work full time and those that have to struggle to survive day to day. Without a set source of income bank accounts, savings accounts, retirement funds, etc. are quickly depleted. I have been asked by hundreds of people- "didn't you save for a rainy day"? Or... "What about your savings account?". I am going to be incredibly honest here and share something very personal. I had a wonderful savings account (I was a Dave Ramsey's graduate *smiles*) that by year three of this "adventure" was being drained and then at years five and six was completely depleted. (Just to give you a slice of a picture I have spent in the last ten years approximately $200,000 on medical issues, supplies, supplements, travel to doctors, etc. desperately trying to get well!!) I, like most other Lyme Disease patients, have lost any "saved money", savings accounts, retirement accounts, etc in the desperate fight to get better. Many patients like myself have limited funds and to answer the questions that I am sometimes asked- no I do not know where the resources that I am going to need for today and the rest of this week let alone the months and years ahead (until I am able to work full time again) will come from. I am a christian who is madly in love with her savior and have learned to trust that He will always provide for me - each step of this journey.

Lyme Disease patients worry about things that most people don't think about. I will debate for hours and hours each week on which supplement or antibiotic I should do "without" due to money. We have concerns and stresses that are impossible to explain. We have sold everything we can think of, have had to humble ourselves to ask for money and are embarrassed to admit we have done so, and have asked every family member, friend, and stranger for help. In the process most of our relatives and friends have depleted their savings accounts and bank accounts to help us. Let me say what most Lyme Disease patients are thinking about all of the time but are ashamed to admit:

We don't care about the battles of politics and insurance. We don't care about "which treatment" is supposedly the best. We don't care about "this or that". What we do care about is fighting for our lives and our health and most of us are so scared that we can never get better because we do not have financial ability to do so.

And I think it takes absolutely no explanation about why Lyme Disease patients also struggle emotionally. The rigor of this fight takes a courage that I never knew before. It takes bravery to face what is realistically going on in your body and the courage to fight for hope despite the odds. It takes courage to look around and realize that your life has been crushed, accept the loneliness of "friends" walking away, and to come to terms with giving up a job that you loved and to recognize that you might never be able to return to it, to find joy despite the pain, to hold on to Hope when it seems so dark, and to believe (against what you have been told) that you can fight this silent and vicious killer. While there are days of tears and darkness Lyme Disease can not silence love and that is what each and every person fighting Lyme is holding onto.

May is Lyme Disease Awareness Month. Will you please spread the word about this disease and give a BIG hug to those you know who are fighting it? Your kindness in recognizing and spreading the word will touch the hearts of ALL who fight each day.

I, like every "lymie" I know, longs to see a world where "Lyme Disease" are words that are understood by the medical community along with friends and family understanding it. We long to see knowledge that is spread so that someday we will have a cure so that no one else has to live this fight. Thank you so much for spreading the word during this month.

Want additional resources on Lyme Disease? Check out "the Lyme Diaries" series on this blog! Interested in reading my personal story with Lyme (and other health issues) you can find it HERE in the notes to the porch section.

Hollis - Your post makes me feel extremely lucky. A few years ago I worked on gas meters for the power company. My wife found the bullseye rash between my shoulder blades with the deer tick still embedded in the middle. I was a temp and had no healthcare so, I got a scrip for 30 days of doxycycline at a strip mall emergency clinic. Finished the scrip and never had another problem or symptom.(that I know of)

Yes , if you can treat it within a day or two,it seems most can knock it out, probably before the Lyme spirochete forms a protective spore around it after that. There is a feeling from some Lyme researchers that this spirochete forms it every time it detects an antibiotic or your immune system rallies.Making it hard to treat.

In my case I went for 34 years w/o getting sick more than one day (I consider that a win for my immune system)but one day I woke up with I at first thought was the flu,..but I had a feeling after a few days that it might be Lyme because we were getting a lot of it around here.

I was one that DID test positive,..VERY Positive with nearly all the bands showing it (infectious disease Dr said he never saw anyone with as many. I never saw a tick or a bull eye rash.

Actaully I'm looking into the IV vit C as I know someone who seemes to have had good results with another health problem

Hollis,

thanks for sharing

One of my close friends suffered long term from Lyme. Unfortunately he got infected at the beginning when it was not widespread and went to school in N Vt where they didn't

know what to look for. He was hospitalized for 3 months, recovered slowly afterwards and at some point had atrophied hands for a couple years and bells palsey. After ten years or so he regained normal functions but developed a heart condition. He did a couple of years ago from heart failure.

I have had lymes 2x that I know about and tested positive and once where I didn't test positive and the dr didn't want to give me antibiotics. This was during the period when antibiotics being over prescribed was in the news.

At the beginning I would get the lyme titer every year to gauge my antibody level, but that turned out to be useless. In the past 3-4 years I have developed debilitating fatigue where it was almost a struggle to perform normal daily functions. On top of this I have severe allergies, so it's like a double whammy. I have also experienced memory loss. Last year I was in the hospital for my appendix and had sepsis. I was on an iv antibiotic for 5 days. It was horrible, but I kept thinking that it must be killing off the lyme too. This year I am less tired but still forgetful. My allergies still get me down. The local public radio has covered lyme extensively on the medical monday shows and there is a lyme specialist in the hudson vally/ berkshires region that they have interviewed a few times. Look up WAMC

Hollis: .how often does she get get stung?