This is a post from 2014 that is just as relevant today as it was then. Lyme kills and it’s totally preventable. Here’s a snapshot of my story at the time. It’s a rather disjointed post as I’m very sick at the time. The facts are the same, the CDC doesn’t have a proper record of Lyme cases and still doesn’t acknowledge that long-term Lyme exists which relates to insurance not paying for care. 

We were put in the very position of having to take out a second loan on our house for my $150,000 medical bills. I still have many complications with my health today some most likely related to Lyme.

Yes, Warrior was the nickname I went by in 2014. 

2014

Over the past 6+ months, my Neurologist has performed every test in her arsenal except a spinal. Every test she ran came back abnormal yet she was not able to pin down a diagnosis (see post Are Those My Brainwaves). She referred me to a Rheumatologist to start on the treadmill again.

I started researching illnesses that included brain wave abnormalities to weed out my more common symptoms. There were the ones I expected, Lupus, Multiple Sclerosis, or other autoimmune disorders. I didn’t think my answer would come from RA Doctor.

More research and what I found was alarming, not the illness alone, but the politics and witch hunt taking place. The illness is Lyme or other tick-borne illnesses. The CDC rates Texas as med-high concentration. The east coast is at epidemic levels with some articles stating we are facing epidemic levels across the country.

I had a different idea for this post yet feel it’s critical to get this information out ASAP. When I learned of the divide in the medical community over Lyme, I shook my head. What is the controversy? The CDC establishes treatment standards for doctors. The standard Lyme test is based on 20-year-old information. What happens is you go to the doctor for a Lyme test, and it comes back negative. You then find out the test is 30% +/- correct. The CDC acknowledges the test has false positives yet the standard for testing hasn’t changed.

With a lack of confidence in the test, I wanted to see a Lyme Literate Doctor. What blew my mind was a current-day Salem Witch Hunt is happening. On one side of the controversy are doctors who specialize in Lyme and tick-borne illness. If a tick bite is not caught right away it grows in your system. Lyme looks like a long skinny curly worm. It bores thru your body damaging your organs or brain depending on where it lands. The symptoms can move around your body as the virus spreads.

Lyme is hard to kill, it can encapsulate itself in an invisible cocoon and is near impossible to see under a microscope. The Lyme doctors take the approach, attack the virus aggressively for long periods of time to prevent a relapse. People who are very ill from Lyme can require years of antibiotics. Not only to kill the virus more importantly to save your life.  Here’s the rub, the CDC states that 2 weeks of antibiotics will cure Lyme and doctors can prescribe an extra 2 weeks if needed. Medicare pays based on the standard set by the CDC. Insurance companies only pay what Medicare pays.

Doctors treating Lyme patients until they start to get called before the Medical Review Board and have their license taken away for a year. Insurance companies are canceling people’s policies and they are left with 150k+ in out-of-pocket expenses. People have to decide do they lose their house or get their loved one’s treatment. It is heartbreaking to watch the videos on YouTube.

There are two main associations which doctors join, it has become one assoc. for long-term treatment and the other against. Most doctors go underground and do not list themselves as Lyme Literate.

When I decided to seek out a Lyme Literate doctor it was a process. I called the association, and they took the info on where I lived and would call back. The next morning I received a call with a doctor’s name and phone number. I later found out the doctor I’m seeing was the first to lose his license for a year. I didn’t know if I should jump for joy or not.

I can’t stress enough how serious the illness can get. I’m battling over 50 symptoms on any given day. The size of tick you are looking for is a nymph about the size of a sesame seed. When you’re doing tick checks on you and the kids, these are hard to see. Around 30% of people get a bulls-eye rash. Please remember to check your scalp, they can hang out in your hair. A flashlight might help with this task.

I’ll keep you up to date on how my appointment goes. I’m not worried about what, I need an answer to move on to the next hurdle. I will do a f/u post including more information about treatments.    Warrior

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Fibromyalgia Awareness Month is important to me because I have it and know others that do. One of the biggest challenges Fibromyalgia patients face is there are so many different symptoms and they mimic other illnesses. That’s one reason it can years to get a proper diagnosis.

Why National Fibromyalgia Awareness Day?

Fibromyalgia is a chronic, complicated disease that affects millions of men and women throughout the world. A musculoskeletal illness produces widespread severe pain with symptoms like increased skin sensitivity, muscular rigidity, difficulty sleeping, memory and attention problems, excessive weariness, and headaches.

It is a challenging condition to identify because there isn’t a single test that can detect and treat it, and the symptoms get frequently misdiagnosed as attributed to other illnesses. Many people feel that the condition is psychological and not genuine due to a lack of research and the difficulties in defining the variables that cause it. Furthermore, there is no permanent relief for the suffering.

As a result, the keys to combating Fibromyalgia are awareness and financing. The goal of this day is to raise awareness about the condition and to encourage further research into finding a cure. The day’s observances greatly minimize the level of threat and the likelihood of being afflicted. When we try to learn more about a disorder like fibromyalgia, we realize just how far we’ve come in terms of innovation and advancement. Observing National Fibromyalgia Awareness Day allows us to reflect on our accomplishments.

Thoughts

Another huge challenge of having Fibromyalgia is it’s invisible, you don’t look sick unless you’re having your worst day. Most of the time you look fine and that is where the misunderstanding about the illness starts with friends and family. You can’t predict how you’ll feel tomorrow let alone next week, so you make plans, only to have a flair day and can’t get out of bed or can’t think straight and have to cancel your plans.

When people think you look fine and you’re not they can take it personally, that’s why it is important to talk with friends and family and fill them in on the basics of the illness and tell them that when you have to cancel on short notice it has nothing to do with them or not want ing to see them.

One thing I would highly suggest for someone newly diagnosed is to take your loved one or family member to all of your doctor’s appointments. This made a huge difference for me with my mental illness. My husband got to hear everything from the doctor’s mouth and got a better understanding of what I was dealing with. We also tell our doctor symptoms we don’t talk about every day and this is another time your loved one can understand all the ways Fibromyalgia affects your life.

Another way you can help is to participate in a Clinical Trial for Fibromyalgia, Keep your eyes open for news about trials in your area. It’s always possible you’ll get a drug that helps you in some way vs a placebo. It’s a 50% chance.

Go easy on yourself. If the house isn’t as clean as you’d like, don’t worry about it. Work a little at a time or call a house cleaning service if you can.

I’ve included a few posts I’ve written on the subject.

https://lookingforthelight.blog/2022/05/05/my-tips-for-some…roawarenessmonth/

https://lookingforthelight.blog/2021/05/12/fibromyalgia-tho…not-a-pity-party/ ‎

https://lookingforthelight.blog/2020/07/29/fibromyalgia-tho…-without-a-flair/ ‎

https://lookingforthelight.blog/2020/10/13/fibromyalgia-tho…ration-and-anger/

You can find more posts on my site.

Melinda

Looking for the Light

@lookinglight

References:

National Fibromyalgia Awareness Day

Gone are the days of the Pharmacist calling you over to explain the side effects of your medication, for that matter most of the time I don’t even get the sheet that has a brief explanation of the side effects. This puts the responsibility on us and it’s imperative we take the time to understand all the nuances of each medication we take.

And speaking of medication, it’s important to know what supplements can affect your medication. There are many common supplements that not only have serious side effects but that also counteract your medication. St. John’s Wart is one. The site I’m talking about in this post won’t give all the information on supplements, you’ll have to research them on the internet. Be sure to look for a credible site like WebMD or Healthline.

Social media is the last place to go for information, when looking for accurate information, you want to hear it out of the manufacturer’s mouth. It’s called the Prescribing Information. This is all the information provided to the FDA in order to get approval for the drug.

You don’t need to read all about the clinical trials, the drug’s half-life, and every detail but the side effects are important.

In America, you can go to FDA.gov for Prescribing Information straight from the manufacturer.

Once at the site:

Midway down the page to Drugs, click.

Then Drug Approvals, and Databases, click.

Scroll down to Drugs@FDA Search, click.

You’ll see a search section and a place you can search by alphabet as well. Type in the name of the drug.

In my search I went to Abilify, then you’re given a choice, I picked the oral type and clicked.

This takes me to several documents I can click on, the one I wanted was the Medication guide.

Down towards the bottom of the side effects it talks about serious side effects. This is what you want to be familiar with. Your doctor probably covered some of the most common but if you take a drug for a long time it’s good to have a refresher course.

This information is directly from the manufacturer, not some site on the internet.

Know what you’re taking and be sure to share an updated list of all drugs and supplements you take with each doctor, every time. I also keep one in my handbag, by my driver’s license in case of emergency.

You can also find information about recalls, adverse events, and medical devices on the site.

Melinda

I hear people say their General Practitioner doesn’t listen or have enough time during their scheduled appointments. They Don’t! I’ve left the doctor’s office frustrated so many times, so I came up with a system that works for me. You can adapt to what works with your doctor and style of communication. 

Knowing exactly how much time is scheduled for the appointment is the first step. My previous doctor scheduled 15 minutes, was always late, and rushed off to the next appointment. After several months of total frustration on my part, he had the office check to see if my insurance would allow a double appointment time, which they did. Now instead of 10 minutes at best I can 20 minutes. This made a huge difference. 

You have to set realistic expectations on what can be discussed in your allowed time slot. If you have 15 minutes you can expect 10 minutes in most cases. In ten minutes you can’t discuss 45 minutes’ worth of topics. Set expectations.

Go in with an agenda of two items you want to discuss and have each item laid out on paper with any side effects or symptoms your having and any related questions. When your doctor comes in the room don’t sit and chit chat, go straight for I know you’re busy so here’s what I want to accomplish today. 

This will give your doctor time to ask more detailed questions and dig a little deeper each visit. It will also give you time to discuss any side effects you should be concerned about if a new medication is prescribed. Don’t walk out of there without asking what side effects you should be concerned about, I don’t care if you can look it up on the Internet. It’s the doctor’s responsibility to assess your specific health conditions and the medication. You don’t need all the details, get the basics, and when to go to the hospital or call them. 

If you were not able to discuss all your issue and concerns then don’t leave without another appointment to get them covered. Working with your doctor is a process and one that will take time and each one is different. Remember your doctor is a generalist, not a specialist. If you feel your issues aren’t being heard after repeated attempts then ask for a referral. 

After 15 years I changed doctors, we just weren’t communicating anymore. It’s the best thing I could have done. I love my new doctor and her style, she’s very proactive and hands the baton off to a specialist much quicker than my old doctor. 

Have a Plan

My current doctor schedules 30 minutes appointments, is rarely late and we cover three topics. I usually get the full 30 minutes if not a few more. She looks at my chart online while we’re talking about if she needs to check medications, we discuss appointments with other doctors and we discuss my three topics or concerns. Because she is so close to the house and I get such focused attention I don’t have to see her as often or when I’m having a hard time, it’s very easy to see her more often. 

She worked in an Internal Medicine office before so she is very familiar with Lyme Disease and Fibromyalgia. In just a few short years I’ve seen her, she has sent me to the appropriate specialist early on versus my old doctor who was slow to give a referral. She sends me a referral as soon as she’s out of her specialty. 

By doing so, she has helped discover several critical health issues that needed immediate attention without delay in trying to treat herself. This is one area I feel my previous doctor failed me in after seeing how my new doctor does business. 

She always looks up the side effects and checks to see if there are interactions with my other medications. She discusses side effects and even knows when my insurance company needs a preapproval on a medication. That way I can be mindful that if it takes a little longer to fill the prescription. 

I look at my doctor’s appointment like I did when calling on high-level executives during my sales career. They are pressed for time, have too much on their plate, and usually have big egos and type-A personalities. When you meet with a C-level executive, you go in shake their hand, and tell them why you are there in a few brief sentences then you shut up.

I go to my doctor’s appointments with the same type of mentality. Know how much time I have, state what I need, and give the doctor time to do their job. They can’t do that if I don’t stop talking and asking questions. 

Set the right expectation and if you are unsure then ask your doctor honestly how to get the best out of your time with them. 

Go in with facts, and a list of symptoms but don’t tell them what is wrong with you unless you are with your specialist or you are talking specific illness-related questions. Most doctors are going to tune out the minute you say what you have. Let them do their job. 

In what ways have you been able to improve your communication with your doctor?

Melinda