Tag: lyme disease

HOW DOES IT FEEL TO LIVE WITH AN INVISIBLE ILLNESS LIKE LYME DISEASE?

After more than a decade of being sick, I still get asked within my circle of friends or by extended family members how come I am not cured yet. Or why don’t I look sick like other Lyme patients they have seen in the news? Some insist on recommending me a either specialist or a home made remedy meant to bring me some relief, while others dive in pure oblivion and tell me Lyme is not real.

 

A few years back, I used to  get annoyed by these comments. I was disturbed by the fact they were not able to see what I was going through. I blamed them for not taking a step further and digging deeper in what my Lyme world looked like. I felt the gap between us grew bigger and bigger day by day. I couldn’t relate to anything they were interested in, while they failed to understand that I had hit rock bottom, that my priorities had changed and my life had turned into a Lyme wonderland.

 

Now I know that I was equally responsible for this gap, as I chose to isolate myself and keep my story and suffering private for various reasons. As a result, I lost a lot of people on the way and I am partially guilty for not doing any follow-up. I was too tired dealing with the havoc caused by my illness to think of others. Or maybe Lyme got me less  tolerant to nonsense. I don’t take it anymore. I am too busy digesting my Lyme cocktail to worry about what people think or want to hear.

 

During any social gathering that I attended, when asked “How are you? How are you feeling? ” I always replied “It depends on how much time you have.” At that point I was able to see the confusion on their faces.

Then I would continue with my explanation. For those who were pressed or simply asked me a polite question my answer was: “I am fine! Thanks for asking!”

To those who had a minute or two, I used to say that “there was room for doing better” and talk only about my dietary restrictions.

 

Only to those few who had five minutes to listen to me, I was giving a brief summary of my daily cocktail, explaining how the burning under skin felt like, giving a preview of day with my shifting pain, tremors, twitches, floaters, fatigue  and concluding with the level of pain from a scale of 1 to 10.

 

In the rare occasion I was being given more than five minutes, I would dare to talk about my anxiety or how lonely or depressed I felt. In most of the cases I would stick with “I am fine!” just to avoid having my audience bored or having another polite conversation.

 

I learnt to tailor my answers according to the time I was offered. Let’s be realistic, who wants to listen to a sick person venting about his day?  

One day I was not able to stick to my tailored answers and I simply blew off some steam. I could not pretend anymore I was not affected by others’ comments or reactions regarding my chronic illness.

 

Thus I decided to Lyme-educate everyone around me in order to raise awarenesses. I started to open up more about my symptoms, the anxiety and depression I was dealing with. For the first time in years, I was revealing a more detailed picture of how a regular day looked like for me. Their reactions varied and revealed a wide array of feelings: empathy, surprise, shock or boredom.

 

That was a valuable lesson which taught me that when no one played on my side, I had to put myself first. Therefore I changed. Lyme changed me. It bent me but didn’t break me down. I turned into a survivor and I don’t exaggerate when I say that. I got stronger! Think only at the level of pain I am constantly dealing with! On top of that, add the burning sensation which never leaves me and the chronic fatigue.

 

I doubt one would be able to cope with it and still be able of doing other things. I turned into a Lymie. I did not know there was a name for it. A lymie warrior and writer, as I found comfort in writing. When there was no one around showing any interest in what I had to say, I wrote it down. That spilled ink helped me get it out of my system. I dealt with feelings which I had no idea how to label or understand: anger, guilt, rebellion, despair, etc.

 

Soon the writing took a different direction, as I realized that my voice was being heard. I understood that it was within my power to make a change, to help others see what it meant to live with an invisible illness.

I was pleasantly surprised to see that my words brought comfort and helped others who were still struggling to come to terms with their illness. The isolating loneliness of a chronic illness takes a toll on you, more than you could imagine. Talking about it can only shorten the gap between the two sides.

 

What did you do to keep your sanity? What helped you move forward and empower yourself? What determined you to raise awareness? I’d love to hear your story!

 

 

 

TICK BORN DISEASE WORKING GROUP MEETING BRINGS HOPE TO LYME PATIENTS

 

The lack of scientific progress regarding Lyme disease has created a lot of frustration within the Lyme community. Lyme patients are tired of being patronized, discounted and dismissed.

Thanks to the Tick Born Disease Working Group changes are going to be made. Within the two-day meeting  of the HHS Federal Tick Borne Disease Working Group held on December 11th and 12th, on Washington D.C., vital questions were addressed.

 

Here’s a bullet point summary of the meeting:

 

DEVELOP ACCURATE DIAGNOSTIC TESTS

  • Develop tests capable of recognizing all stages of the infection and the co-infections
  • Discard the two tier testing approach
  • Educate the patient regarding the test’s reliability (false negativity)
  • Fund new research 
  • Examine together medical anecdote, control studies, empirical observations
  • Leave aside egos, pride, intellectual rights, come together for a better cause.

 

FIND WAYS TO IMPROVE THE LIFE OF LYME PATIENTS

  • Forget the CDC definition of diagnosis
  • Recognize, treat Lyme and co-infections
  • Create a national education course for medical providers
  • Provide support to the doctors treating Lyme patients (no more penalties, disciplinary procedures, license suspension or other repercussions)
  • Allow physicians to treat the patients and their symptoms.

 

METHODS OF PREVENTION

  • Mass media prevention campaign
  • Tick awareness and prevention curriculum  should be developped and implemented in all forms of schooling
  • Develop a safe and effective vaccine against all Borelia strains and co-infections
  • Create proper screening technique to avoid transmitting Babesia to the national blood supply for the public’s safety.

 

 

For a more in depth information regarding the agenda, the public and federal members, stakeholders please watch the videos below:

Tickborne Disease Working Group NatCap Lyme Presentation

TickBorne Disease Working Group – Jenna Luche-Thayer

Tickborne Disease Working Group – Nicole Malachowski

Tickborne Disease Working Group – Susan Green

Tickborne Disease Working Group – Olivia (LivLyme Foundation) – Public Comment

 

WHAT DOES A LYME PATIENT WANT FOR CHRISTMAS?

Have you ever wondered what’s on the Christmas wish list of a person who is chronically ill? What could he possible ask Santa for? Would his wish list look similar to yours?  Let me start by saying that the correct answer is not snow. Nor ice, nor a gift or a warm pair of socks! He doesn’t dream of any of these.

 

What a lyme sufferer really wants is to get well and leave behind this bad dream. Since getting a cure for Lyme is not a viable option (yet!), his second wish for Xmas is recognition. It may sound strange to you, since only an insider to this condition may know what that really means.

 

A lymie wants and needs recognition for his condition. It is his right to be treated with the same respect and dignity as any other human being who needs treatment and care. The last thing he needs is a stranger telling him his illness does not exist, that his symptoms are psychosomatic or to be treated as an attention seeker patient.

 

Unfortunately the lengthy process of diagnosing Lyme requires him to pass through various hoops. In order to get a proper diagnosis, he has to see an endless list of specialists, hoping that at least one of them would be Lyme literate.

 

A person infected with Lyme needs and deserves to be given and same type of care, as any cancer fighter, AIDS sufferer or any other type of autoimmune disease patients (MS, Lupus, RA, etc.) when he reveals his burden. Sadly, instead of empathy and compassion he faces raised eyebrows, closed doors, multiple misdiagnosis and even ridicule.

 

This scenario is not only happening within the doctor’s office but sometimes it occurs within his family as well, which makes it even harder to deal with. It’s no surprise that anxiety and depression come along with Lyme! It’s tough enough that he has to cope with all these symptoms caused by Lyme and the co-infections. Having to reassure others that he is not faking the symptoms is just too much!

 

I bet that it never crossed your mind that a Lyme sufferer has to worry about losing his disability income just because others believe he “doesn’t look sick” enough. Anyone dealing with an invisible illness, becomes an easy target to all sorts of acid comments or remarks which can have a negative outcome.

 

Therefore, a lyme patient is fed up of being asked if his condition is real or not. He’s tired of seeing so many doctors and not getting an answer to the questions “why his body is falling apart” or “why he is denied treatment?”

 

His illness is as real as you are! Just because your knowledge is limited, it does not mean you can label him or decide his faith. What you can do is learn, educate yourself in order to grow compassion and empathy towards those who got affected by chronic Lyme disease.

 

A lyme warrior  is done dealing with politeness and rhetorical questions coming out of ignorance or oblivion. Why a Lyme warrior and not simply a patient? What sets him apart from the rest is his incredible strength to fight for his right to treatment, as he deals on a daily basis with the burning under the skin, chronic fatigue, joint pain, flares and so on…

 

Even on a good day, which rarely happens, a Lymie has to cope with pain. Life doesn’t stop just because he got sick. Life goes on and so does he. Kids need to be cared for, meals have to be cooked, chores have to be attended, homework has to be done, etc.

 

Ask yourself if you’d be able to cope with all these and still move on with your life, before you question or  judge anyone affected by a chronic illness!

 

 

 

LYME MOVIES

 

GRACE NOTE  is a recently released short movie (November 2017), based on true story, featuring Tracy Mulholland, Yael Grobglas, Jake Stormoen.

LYME ON THE RISE  reveals the stories of two Lyme sufferers who have been misdiagnosed for years. The video manages to  link their illness to the environmental changes we are currently experiencing.

 

 

UNDER OUR SKIN 1 (trailer)  a 2008 documentary about Lyme Disease.

UNDER OUR SKIN 2 -EMERGENCE (trailer) a 2014  documentary raising more awareness about Lyme Disease.

 

UNDER OUR SKIN (Director`s cut)

 

 

HOW TO HELP YOUR LYMIE FRIEND COPE WITH THE HOLIDAYS


For a Lyme warrior, every single day is a struggle. Holidays bring additional stress, as they lost their enjoyable feeling and glory.

The holiday gatherings  turned into a source of misery, a reminder of a distant life that a Lyme sufferer can’t no longer enjoy.

Battling Lyme, chronic fatigue, depression, pain and so on, leaves one drained, with no desire whatsoever to attend a social gathering.

Though it doesn’t mean that things have to stay this way or there is nothing that you can’t do about it. That being said, here are twelve tips on how you can make your friend(s) or family member(s) overcome the pain of isolation at holiday time:

 

  • Run errands. Ask if they need any help with his Christmas shopping list. You can either volunteer to take them around or to do the shopping for them. Keep in mind that texting is a less invasive way of communication. Rest assured that your text message is being seen, even if you do not get an instant reply. Take it from a Lymie, it always feels good and it brightens my day to see my friends care about me and how I feel.

 

  • Offer to prepare a meal. Prior to cooking, ensure you are aware of the dietary restrictions. There are plenty of healthy recipes online for Lyme. Also delivering it in person once or twice a week, gives you a chance to chat face to face and brighten their day. It does not have to be a long visit.

 

  • Volunteer to babysit the kids (if it is the case)  for a few hours or take the pets out for a walk. That would offer your friend(s) or loved one(s) a chance to rest or do something for themselves. They would definitely appreciate your offer.

 

  • Offer house cleaning services.   Offer your services for their Xmas house cleaning or doing /folding the laundry.  What it might look like a simple house chore to you, requires a huge amount of effort from a Lymie. Attending to household duties can be exhausting when you are fighting chronic fatigue, pain, etc.

 

  • Invite them over for Xmas. Holidays are tough and stressful period for anyone who suffers from a chronic illness. You certainly don’t want your friend(s) to feel alone and depressed on Xmas. Generally Lyme sufferers tend to isolate themselves from the world. They feel left out because they can’t relate to the normality of others.

 

  • Accommodate for a special nutritional plan or diet. In most of the cases, Lymies follow a strict diet which does not include any of the dishes you are regularly planning to serve for Xmas. Your friend will certainly appreciate your efforts of preparing some delicious food according to their diet for them. Note that it takes a lot of effort and self-discipline to see others stuffing themselves with all the forbidden goodies, while they are on a very strict diet.

 

  • Serve sugar-free beverages and sweets. When you are doing your groceries, buy some green tea, natural juices, non-alcoholic drinks, bottled water because they won’t be having alcohol.  Also get some dairy sugar-free ice cream for the Xmas evening feast. Try making a new gluten-free dessert using Stevia!

 

  • Provide a resting space. Ensure you have a resting area available, in case they feel overwhelmed or exhausted. Standing, sitting too long or even a long conversation can knock them down for the entire day or even longer. Remember that people with chronic illness have limited energy.

 

  • Act normal in their presence. Do not be overly polite or try too hard to make them feel better. Don’t avoid topics related to Lyme, as if you are walking on eggshells. They don’t need pity. That type of attitude might get them annoyed.

 

  • Educate your guests. Let your guests know in advance that your Lymie friend(s) will be present and ensure they will not bombard them with questions about Lyme, or mention a comment such as “ You look fine, you don’t look sick!”.

 

  • Prepare some take away casseroles for them because they won’t be feeling like cooking. You will save them the pain of spending time cooking in the kitchen.

 

  • Be direct about the Xmas gift. Ask bluntly what they need and don’t take no for an answer. Leave politeness and shyness aside. Most of the Lymies speak their mind because they are literally too tired to play games.  The gift can be anything, from vitamins, supplements, whatever thats need. It will be more appreciated than another trinket or something that won’t bring any direct benefit.  When fighting chronic fatigue, a Lymie doesn’t have a lot of energy left. Address the gift issue directly and go for it!

 

 

PASSING LYME DISEASE TO YOUR KIDS

Today I read an article that brought tears to my eyes: four out of five members of Victoria (Minnesota) family struggle with Lyme. Their story made me look at my Lyme from a different perspective.

Getting diagnosed with Lyme  can be  a long and frustrating process. Living with Lyme is a tough challenge. This illness turns your life upside down, drains your bank account and messes up with your mind.

Once the chronic fatigue settles in, you can’t afford to waste time debating if you have or no Lyme or if it is real. All you know is that you are not yourself anymore. You need help. You would do anything to feel better, not to mention about getting your life back.

But having your kids sick, that is just heartbreaking. As an adult, you can struggle and do your best to win this battle against Lyme disease. You can take millions of pills, follow strict diets, try new alternative treatments or therapies. It’s not an easy task.

When nothing seems to work, you tell yourself that at least you had a good life before getting Lyme. Not that would make you feel better, but it helps you accept your chronic illness and focus on ways to live with it, instead of curing it.

Though what do you do when your child gets diagnosed with Lyme? I can’t even imagine how terrible that must feel, when you have to see your child going through the same things as you.

How can you inspire hope? How would you be able to reassure him that he will get well? How can you stop feeling responsible for their sickness? The mere thought of passing Lyme to your on kid, is horrifying.

I can’t imagine the struggle of a parent who has only hope left for his sick children. In moments like this, I realize how blessed I am that my child never presented any Lyme related symptoms.

Keep up the fight dear Lymies!

 

 

CLASS-ACTION LAWSUIT AGAINST MAJOR INSURERS DENYING LYME COVERAGE

An article posted by courthousenews.com revealed that the major insurance companies are conspiring to deny Lyme disease coverage. Surprised? I guess not!

 

At the beginning of November, in Texarkana, Texas, twenty-eight people, Lyme sufferers, filed a class -action lawsuit against multiple insurance companies and several medical doctors.

 

The plaintiffs claim that the health insurers used “bogus”guidelines established by their paid consultants, IDSA in order to deny them coverage.  They blame their lack of health insurance on IDSA as well.

 

IDSA stands for Infectious Diseases Society of America, the medical association responsible for developing the clinical practice guidelines. IDSA says Lyme can be cured with only 28 days of antibiotic treatment.

 

According to the lead plaintiff, Lisa Torrey, back in 1990 the major health insurance companies agreed to pay IDSA (affiliate doctors) to establish arbitrary guidelines. Long story short, the researchers produced in 2000,  new guidelines saying twenty eight days of antibiotic treatment could cure Lyme disease.

To read the full article, click here

 

Looking forward to see something like this happening in Canada! Would you get involved? Drop me a comment if you would!

 

 

 

THE TRUTH ABOUT LYME DISEASE

Years back I developed a daily habit of a looking online for news regarding Lyme Disease. Today I stumbled upon a video uploaded on Youtube by the King Institute, The Truth About Lyme Disease They Don’t Want You To Know.

I was pleasantly surprised to see that they said out in the open that Lyme is number #1 infectious disease within USA.

The lecture offers a lot of information about Lyme and the co-infections. It is worth watching it!

ARTHRITIC GLOVES FOR LYME? WHO KNEW?

Among the many symptoms that a Lyme sufferer has to deal with on a daily basis, the Lyme arthritis is by far one of the most painful. The pain, the swollen joints, the stiffness experienced in the late stages of Lyme disease are hard to cope with, especially during the colder months.

Some patients find relief from pain with heat or cold therapy. By using or alternating heat or ice packs, they can reduce inflammation. In my case, it turned that only heat could help me cope with the pain.

As much as I tried to protect myself from the harsh cold by wearing all sorts of gloves to keep me warm, I still had pain in my hands. I had pain while I was outdoors and indoors.

That was until I discovered Thermoskin Arthritic Gloves which provided me the warmth and the gentle compression meant to bring me the long waited relief. For years I had been looking for some product that would help me with my rheumatic pain, that would make my aching hands feel better.

These Thermoskin gloves did the trick. I admit they were a bit pricy compared to other models available on the market, but for me, they did and still do the job. I am curious to learn more about the Thermoskin slippers if they could help or no with the pain?!

How are you protecting yourself against the cold? What are the remedies or tricks that worked for you?

WHAT ARE THE ESSENTIAL OILS USED FOR LYME?

When I had to stop my antibiotic treatment, I switched to essential oils, which enabled me to function at 80% capacity of what I used to be. Yes, the essential oils played an important role in my recovery.

 

The use of essential oils, my Lyme diet and the red infrared sauna were my only weapons left against Lyme and the co-infections I had been diagnosed with. When I started using the oils, I knew nothing about their super powers. All I had was hope. Hope that I will get better.

 

I did not know how they worked, what brand to buy, what combination to take or that I had to rotate them throughout the year. I was new to all that. It was through a long series of try and error that I discovered the key oils for Lyme and what worked for me.

 

So, here are the winners, with the link attached: