The Reality of Living with Chronic Lyme Disease 

When first getting sick many of us just think it’s the flu, we stay home and try to sleep it off. But sometimes that flu turns into an unknown illness.
Many patients with Lyme Disease spend their first weeks and months of being sick going to their family doctor, walk-in clinics, and the ER trying to figure out what is going on with their body. The longer this goes on, the more other symptoms can develop causing us to miss school, work, and social events.
After a while, doctors begin to question whether we’re in the amount of pain that we say we are in. They accuse us of faking our illness for attention, dismiss it as being nothing, tell us to ignore our pain, think positive and to enjoy life. Some doctors will even refuse to see you simply because they deem you as not being sick enough.
We’ll visit doctors of many different specialties and ‘ologist’ at the end of their felid of medicine. During this process, we endure countless blood draws, medical testing, symptom checklists, countless waiting rooms, only to hear the words, your blood test are normal, your perfectly healthy so you must be making all of this up, or I simply don’t know what’s wrong with you.
During this time, you can even be misdiagnosed with illnesses that look like Lyme; such as, Chronic Fatigue Syndrome (Myalgic Encephalomyelitis), Fibromyalgia, MS, ALS, Depression, Anxiety, Chron’s Disease, and Psychosomatic Illness-  so many different illnesses can mimic Lyme, leading to misdiagnosis, further prolonging the proper diagnosis and treatment. Lyme Disease is the great imitator.
When your months and years of being sick,  your entire world changes.
Your friends, family members and co-workers all begin to doubt if you’re really sick. Others will stop talking or caring about you completely, others will ignore you or gossip behind your back. You lose friends you once thought cared about you. You can no longer attend school or work so you may have to attend part time. School work may have to be done at home or online. You may even be so sick, that you cannot attend work or school physically or cognitively due to symptoms of Lyme Disease. Therefore, you may have to drop out of school or quit your job. Doing simple things becomes hard. You no longer lead the life you once had. You spend your days in bed, going to the doctor,  or picking up medication. You look normal, this mysterious illness is not visible to the everyday person. Your friends and family still doubt your illness. They will tell you things like: you don’t look sick, so you can’t possibly be sick, to just go outside more, drink more herbal tea, eat healthy, exercise more, think more positively, do yoga .They all think your just lazy and not trying hard enough.
At this point, you or your doctor may begin to realize that you are disabled by whatever illness is wracking your body.
Frustration, anger, and isolation kicks in. You begin to wonder why this is happening to you.
Why did I get sick?
Why do my friends and co-workers not believe me?
Why do my family members think I am lazy? Can they not see the amount of suffering I am going through?
Why do they always doubt me?
Why do they force me to do things that make me feel sicker?
Why do they call me lazy, a fake, a complainer, or weak?
Why do the doctors not believe me?
Do they just think I am here for attention, for drugs?
That I could really be making this all up. Am I really just faking it? Am I really just depressed?
What is going on with me? I feel so alone, no one understands. I don’t even understand.
This is the lowest of the low. When you spend most of your time going from doctor to doctor, constantly reciting your medical history, spending your days at home feeling isolated and in pain.
Your days are mundane, colorless, and all a blur. Every day is the same: you wake up in pain, take a while to get out of bed, try to eat breakfast- but often times, you have no appetite and are nauseated, you may watch some Netflix and scroll through Social Media, take your meds and lay back down.
You force yourself to eat, force yourself to do some chores, and force yourself to take a shower or bath. All the while, battling a host of symptoms that make your life into a living hell.
You often wonder how you even make it through your hardest days.
After enduring many months or years of constant doctor seeking, medical tests, ignorant remarks from family, friends, and doctors. As well as, possible misdiagnosis, needless treatments, and the constant pain and torture that comes with having Lyme Disease and its Co-Infections, you finally receive a proper diagnosis.
 You may experience a moment of relief for finally knowing what has been making you so ill. But that feeling is fleeting and short-lived. When your doctor tells you, or after you google Lyme Disease, and find out that this illness is not an easy one to treat. Everything about this illness is controversial.
You have a long way to go before you begin recovery.
Lyme disease is hard to diagnose and even harder to treat. The doctor you’re seeing will more than likely diagnose you based on your likelihood of being exposed to ticks or tick-borne illness, how many symptoms you have, how many bodily systems are affected, and what symptoms you have, how long you’ve had them and their severity.
 You learn quickly that the testing for Lyme disease is unreliable, sending your blood to be tested with the Elisa and Western Blot will likely come back negative.
Many with Lyme get their blood sent to be tested at a lab in California called igenex. Testing at igenex proves to be much more reliable and accurate than standard testing, but expensive. After testing is completed, it’s much easier to determine what is going on and what needs to be treated. You may end up finding out it’s not just Lyme, you have co-infections too.
Treatment is one of the hardest things we have to go through. Whether  it’s with antibiotics or alternative therapies.
Constantly taking pills that kill the Lyme off, end up causing a Herximer Reaction which causes you to become sicker.
 Herxing magnifies any symptoms you have. The pain gets worse, nausea gets worse, fatigue gets worse, weakness gets worse, your cognitive abilities get worse, your mental state gets worse. Everything gets worse before it potentially gets better.
 Treatment with Lyme is tough. We have to constantly take a wide range of supplements, to make sure our body is supported and detoxing correctly to get rid of any toxic waste from all the Lyme bacterium being killed off. Many of us will have to go on special and restrictive diets.
 Looking after our health is the #1 priority. We don’t get a vacation, or a break from it. We always have to live with our symptoms. It exhausting, you’re exhausted, you’re in pain, you just want this hell to end.
Being sick is hard, it’s even harder having no support from friends, family, and doctors who do not believe in the existence of Chronic Lyme Disease.
Treatment is expensive and oftentimes patients have to travel quite a distance to meet with doctors and receive treatment.
 You soon learn many people with Lyme have to find either a naturopathic doctor who treats Lyme or an LLMD (Lyme Literate Medical Doctor), to treat you. Regular MD’s will not treat you, they either do not believe in the existence of Chronic Lyme, are terrified of getting their licenses taken away for treating Lyme patients or know next to nothing about Lyme Disease. Treatment is often not covered by insurance or medical plans because Chronic Lyme Disease does not exist in the eyes of the CDC (Centres for Disease Control) and the IDSA (Infectious Disease Society of America).
Alternative therapies are not covered either and can be very expensive.
Lyme Disease treatment is often so expensive that many go into debt, some many even have to sell off assets. Treatment is even more expensive when the people receiving treatment are on fixed incomes. Often times, having to choose between different necessities such as food, heat, and medication. You quickly learn that this disease ruins you in every way possible.
Often times one treatment isn’t going to work to heal Lyme. You end up being one of those patients that try treatment after treatment, desperate to find what works for you.
 When you go through this process it becomes exhausting. You go into a new treatment and naturally get your hopes up thinking “this is going to be the treatment that works and heals me”, but when that doesn’t happen you come out feeling disappointed and defeated. This constant cycle of trying new treatments, not seeing any improvements or getting worse is soul destroying. After a while, you just don’t feel like trying anymore but you do it anyway because you want to get better.
Lyme disease itself is a cruel and unforgiving illness, but the politics and corruption surrounding this disease are far worse.
 The CDC and IDSA continually deny the existence of Chronic Lyme Disease despite numerous studies showing that the bacterium can survive and thrive even after antibiotic treatment. The IDSA provides treatment guidelines telling doctors how to diagnose and treat Lyme. These guidelines limit how long a doctor can treat you with antibiotics. The CDC confirms or denies facts about Lyme disease.The CDC and IDSA are both corrupt. This is best covered in the Lyme Disease documentary Under Our Skin, which you watched on your couch while in pain from this very illness. You now are filled with a completely different kind of rage knowing these government agencies are allowing people lives to be destroyed and lost all because of money, greed, politics and corruption.
Many Lyme Disease patients will continue to be sick for many years even after enduring treatment. Patients can go into remission, but the damage may have already been done. Some may never feel 100% and will have the lasting effects of the disease. Some may even die.
Lyme Disease is the fastest growing infectious disease in the United States, infecting more than 300,000 people a year. There are more Lyme Disease cases than Brest Cancer cases. There is very little funding for the research of Lyme Disease.
It’s important to remember that anyone can get Lyme Disease and co-infections. Babies, children, teenagers, adults, and seniors. You can get it through the bite of an infected tick, mosquitoes, fleas, in utero, as an STD, and through a blood transfusion.
This is a debilitating disease that will ruin your life.
Lyme disease and co-infections are serious and need to be taken seriously.
People have died from Lyme, and people will continue to if the CDC and IDSA do nothing about it.

Thank you for reading, hope to see you soon!

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