PICCing Up Steam, Part 1: Everything is Fine

In May, my doctor started the process of getting me approved for PICC line placement and IV antibiotic treatment, and getting all the moving parts going and working together. By the beginning of July, I still did not have a date for line placement set. Between May and July, I fought with my insurance company for coverage for my treatment, to no avail. My wife and I decided to go ahead with the treatment without coverage, while continuing to fight and appeal the decision.  Arrangements were made with home infusion companies, visiting nurses, hospital schedules, and FEDEx deliveries. It was a stressful time. Everything felt even more uncertain than usual, and there was a dizzying amount of phone calls and emails happening.

Finally, I was given an appointment to have my PICC line placed on Monday, July 18. As is my tendency, I researched PICC lines thoroughly. I’ve never had any kind of surgery before, and everything was new to me. I was fortunate to find an internet group dedicated specifically to PICC lines, which was extremely helpful. I found first-hand descriptions of what the procedure to place the line was like, suggestions for protecting the site when showering, and all sorts of useful tidbits of information. I started to feel ready.

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Left arm: before and after

The line placement was much easier than I anticipated! I was awake for the procedure, with a local anesthetic, as is typical. It was over in just a few a minutes and hardly hurt at all. I was able to request to have the line placed in my left arm, as I am right-handed, and my nerve pain typically effects only my right side. The right is the default for a PICC (shorter distance to heart), but my request was accommodated without much trouble.

The worst part of the whole thing was having to wait around the hospital for ages to get my first dose of IV meds, and then wait for it to drip into my arm.

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1st Rocephin infusion at hospital

We finished the whole event with a flurry of excitement, when the nurse came out to the discharge desk as we were checking out to whisk me back to the room for some unknown reason. She proceeded to draw blood from my line and abruptly leave me with a saline syringe hanging out of my PICC/arm. That’s when I started to worry…. When she returned, a man I had met earlier that day was with her. He took a breath and said, “Everything is fine,” with a forced definitiveness that smelled like rat.

He proceeded to explain that the nurse had accidentally flushed my line with too much heparin (blood thinner used to prevent clots), but that I was perfectly fine because it was still a very small amount, and people are routinely given much more for various reasons. I was sent on my way, and returned to my confused and slightly concerned wife who had been stuck out in the waiting room wondering where the heck that nurse had taken me! Ah, good times. Fond memories.

That night the I started to feel the effect of the meds. The flu-like body aches and fatigue set in. The next chapter had begun.

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How I learned the truth about Chronic Lyme Disease

In September 2014, I came down with a flu-like illness. I had a high fever, body aches, extreme fatigue, and a relentless, pounding headache. With no improvement after two weeks my doctor started running tests, one of which was for Lyme Disease. The Lyme test came back positive. I was told that after a few weeks of taking antibiotics, I’d be fine.

I took the antibiotics as prescribed, and got plenty of rest and fluids as instructed, but I did not get better. My flu-like symptoms persisted. The headache was constant, and felt like a knife through my head. Ibuprofen couldn’t touch it. I felt very foggy mentally. I was often having difficulty communicating, especially when tired, and my memory was very poor. One day, I went to write a check, and couldn’t remember how. Never before in my life had I experienced this kind of cognitive difficulties.

When I brought up my concerns with my doctor, who conferred with an Infectious Disease doctor, I was instructed to wait another month to get better without further medical action. I was assured that the antibiotics I took had cured the Lyme Disease, and it may just take a little more time for my symptoms to go away. If I was still ill in a month, I could call back for a follow-up appointment. I listened to the doctors and waited. A month later, I still was not better.

I called the Infectious Disease doctor to schedule an appointment as instructed. The appointment they offered me was another month away. Weeks passed. I still was not better.

During that time, I did some of my own research about Lyme Disease. I really didn’t know anything about Lyme, and I wanted to educate myself about what was making me so sick. It didn’t take long in my research to discover the great controversy of Lyme Disease – chronic infection and long-term treatment. I found many Lyme patients’ stories about their ongoing struggles with the disease. I also found that many healthcare officials and providers claimed Chronic Lyme Disease doesn’t exist. The CDC and IDSA (Infectious Disease Society of America) both take the stance that Lyme Disease is most often cured by a short course of antibiotics, and that people with lingering problems are rare, and do not require further treatment. After falling down the internet rabbit hole of Lyme Disease information, I hadn’t a clue as to who to believe.

Were all the people with Chronic Lyme Disease nuts? Were the Lyme Literate doctors (LLMDs) I was reading about quacks? Or was it the CDC, IDSA, and Lyme deniers that were wrong? I was dumbfounded.

Throughout the first few months of my illness, I tried to put the controversy out of my mind. “I’ll get better,” I thought. “I’ll worry about chronic Lyme and LLMDs if the time comes, and it probably won’t! Maybe all those Lyme people are crazy.”

At the time I fell ill, I was sole proprietor of my own business as a postpartum doula, caring for families with newborn babies. My illness forced me to cut off care early with clients. Waiting to get better as instructed, and waiting for an appointment with the Infectious Disease doctor, the days added up…to four months. My business was, in effect, closed.

I was having some good days, but for the  most part, I had little to no improvement. I still had a persistent migraine headache. I was exhausted – prior to my illness I was never one for naps, but I was needing them regularly just to have enough energy to function at a minimal level. My brain was very foggy. I had trouble finding words in conversation. I was unable to drive on highways because I felt I couldn’t keep up cognitively with both operating the vehicle and navigating safely. The right side of my face and body was often visibly drooping and felt heavy. My neck was often stiff. I was a mess. My PCP had no answers or treatment options for me. The Infectious Disease doctor, who I hadn’t even met yet, seemed very unconvinced that I needed further medical care and saw nothing wrong with me continuing to wait and suffer for another month, on top of the four that had already passed.

I was a previously healthy 29-year-old mother whose life had come to a halt, and I desperately wanted to feel well again. I wanted to have energy to run and play with my young son again. I wanted to return to my work as a postpartum doula. I wanted my life back.

So I took a leap of faith and sought out an LLMD. I contacted ILADS (International Lyme and Associated Diseases Society) for a list of options in my area. I knew it could be costly, and I had no guarantee that I wouldn’t be going to a “quack,” but I wasn’t willing to accept the alternative of continuing to watch my life pass me by. At the end of January 2015, I had my first appointment with an LLMD.

As I got to know my LLMD and continued to educate myself independently, I began to understand where those “crazy Lyme people” were coming from.

I learned that each Lyme patient’s case is unique, and each LLMD has their own road map for treatment, which is then adjusted through trial and error based on each patient’s response and specific situation. I learned that the CDC’s denial of the need for Lyme Disease treatment beyond a short course of antibiotics has closed the minds of many doctors who refuse to listen to evidence-based treatment plans recommended by many of their colleagues, ILADS, and LLMDs around the world.

I learned that I could have a long fight ahead of me to regain my health, but that I was also more fortunate than many, as I found my way to good treatment within months of falling ill, while so many suffer through years of misdiagnoses and lack of treatment.

I learned that patients with Lyme Disease often have one or more co-infections as well, with equally debilitating symptoms, and even less information about how to treat them. I learned that Lyme bacteria can change forms, hide from antibiotics, and persist after treatment. I learned that many doctors and scientists are working tirelessly, researching and experimenting, trying to find answers for the thousands and thousands of people fighting this devastating disease.

I learned that there are success stories. That LLMDs are able to help their patients recover through long-term treatments. That it takes time, and can be very complicated, but there is plenty of evidence that long-term treatment for Lyme Disease is both needed and successful in many cases.

My LLMD was optimistic about my case from the start of my treatment. She suggested that I might be back on my feet in few months. At that point, a few more months sounded like a long time. She ran a wide variety of lab tests to get a very comprehensive view of my health and current state, and we began antibiotic treatment. I was also put on a supplement regimen to help support my immune system, repair nutrient deficiencies and lessen the severity of some of my symptoms. My LLMD follows treatment plans very closely aligned with what Lyme expert Dr. Richard Horowitz outlines in his book, Why Can’t I Get Better?

Lyme Disease is a tricky little bugger. Treating it is like peeling back layers of an onion. As some of it dies, new symptoms can come to the forefront. My migraine headaches were relieved promptly after my treatment with my LLMD began. Soon, new (classic Lyme) symptoms emerged – neuropathy (tingling / nerve pain) in my limbs, and very severe joint pain. The flu-like body aches I had back in September 2014 returned. But I would also have good days, and throughout my treatment my good days would become better. I even started to string a few good days in a row.

Now it is July 2016, twenty-two months after I spiked that fever and my life changed, and I am still fighting for my health. I have been doing everything “right” all along, and taking care of myself the best I can. My treatment has been aggressive and thorough. I am now facing the next and most aggressive phase of my treatment, which I am hopeful will yield success. From where I stand now, I look back and see what I’ve endured and what I’ve learned. I look ahead and know that even after I am “better” (there is no test that can accurately confirm a person is “cured” of Lyme Disease), I may still face Lyme-related challenges in my future, and it will take me a long time to get my body and mind back to their pre-illness state.

The number one thing I have learned for sure, is that Chronic Lyme Disease is real. I know because I have it.

Turning Lyme(s) into Lemonade

As I mentioned here, May was Lyme Disease Awareness month. (Phew, guess I’ve been busy being sick! Two months late with this post!!) I am acutely aware of Lyme Disease every day, but prior to my diagnosis, I didn’t know much at all about disease, and many people still don’t. This is one reason why I share so much about my experience with Lyme. Another other reason being that Lyme effects my daily life so much, it doesn’t take long in talking to me before it comes up one way or another – I’m a becoming a professional Debbie Downer in that respect. My personal tendency to drag down perfectly good conversations with dreary medical updates notwithstanding, Lyme Disease is an illness that could really benefit from some awareness raising. Why is that? Because it is largely preventable.

Did you know that children are the highest risk group for Lyme Disease infection? They are. Children, when educated about tick safety, are also excellent reminders to do tick checks! My son is like the Tick Police™ as soon as spring comes. Any time that we’ve been out at the park or playing in the grass, that evening as he gets ready for pajamas he’ll strip down and lift his arms in the air, announcing “TICK CHECK!”

When I noticed how keenly he took to this responsibility, and combined it with the knowledge of how high risk children are for Lyme, the answer seemed clear – start ’em young! Educate his peers, and turn them all into little Lyme-fighting Tick Police Officers! I had this light bulb moment in Spring 2015, and promptly starting putting together a presentation for his pre-K class about tick safety and Lyme prevention.20150325_113410

It went wonderfully! I brought in lime slices for the kids to take the Lyme Challenge, made poster boards to explain the basics of tick safety, and created handouts to be sent home to their parents with more detailed information.FB_IMG_1427315615537

This year, I approached my son’s kindergarten teacher about doing the same. She loved the idea, and I am happy to report that it was once again a success.IMG_20160520_154947

I am even happier to report the wonderful feedback I’ve received from other parents. Each of the times I gave this presentation, a part of me has worried that the kids would be scared. That my fellow parents would be rolling their eyes, saying, “Grrrrrrrreeeeeat, now my kid is scared of every ant and little bug s/he sees! Thanks a lot, Annoying Lyme Mom!!!” But parents in my son’s class reported back to me that their kids were excited to share “important” information with their parents. The parents thanked me for educating them, for pushing the bug spray, and empowering the kids with prevention tools they needed.

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Click to enlarge

I understand that we all can suffer from awareness fatigue with so many various causes popping up in our social media these days, but it all starts from a good place. People who are touched by an illness or issue, wanting to help others understand what they are going through, or prevent going through it themselves.

Making lemonade.

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Limeade?

Limeaid?

Lymonade?

You get it.

For my next trick, a PICC…and a fight

Where’s my Lymie Achievement Badge? I am officially in an insurance battle.

Since my last update, my doctor has decided it is time for me to get a PICC line and receive intravenous antibiotic treatment. I have been debilitated by Lyme Disease for 21 months. My progress has stalled (again). I am still experiencing neurological symptoms. I have been on MANY different oral antibiotics, tried injected antibiotics, and pulsed oral antibiotics. It’s time to step up our game.

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PICC line: a visual aide!

I am to get the PICC line as soon as possible, and have it for 8 weeks, during which I will administer my own IV antibiotics (after being taught by a visiting nurse) four days per week. PICC lines must be kept dry, so I will need a special cover for the shower, and swimming probably isn’t worth the risk/hassle.

My insurance company at first seemed like they would cover 4 weeks of treatment, but has since decreed that the treatment is not medically necessary, and are denying to cover it at all. Not a single cent. Without insurance coverage, this treatment will cost a minimum of $3,000. Our out of pocket Lyme spending total at this point, pre-PICC is $10,000. So you bet your bippy I’m going to fight.

For people with persistent or chronic Lyme Disease like me – especially with neurological issues – IV antibiotic treatment can help you really get over the hump and start to fell well again. I am very fortunate to have found my way to the Dean Center and received a referral for a PET scan of my brain. My scan results are in, and show that I have hypometabolism in my temporal lobes.

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PET scan day! I got injected with radioactive material, wrapped up like a mummy, and lived to treat myself with a yummy snack!

Hypometabolism cannot be detected by an MRI. It tends to show up in Lyme patients with neurological issues who are lucky enough to get a PET scan (which are not as readily accessible as MRIs). Hypometabolism in the temporal lobes accounts for short-term memory loss, which has been a major struggle for me throughout my illness. The bad news is, hypometabolism has been found to be a precursor for Alzheimer’s. The good news is, the Dean Center has had some success eradicating the hypometabolism in Lyme patients with IV antibiotics.

As I type this, my PET scan results are being sent to my insurance company as proof that a PICC line and IV antibiotics are medically necessary. I’m not sure I can fully exhale until I hear back. If protecting my brain, and preventing Alzheimer’s doesn’t count as medical necessity, then what in the fresh hell does?

More help on the path to healing

One of the many frustrating aspects of living with Lyme Disease is how widely misunderstood the illness is. Many people are surprised to hear that Lyme Disease can linger long after a short course of antibiotic treatment. Even much of the medical community does not understand how devastating persistent Lyme Disease infections can be, and treatment for and recovery from long-term Lyme Disease is still hotly debated.

As a patient, it can feel very isolating to have a misunderstood illness, and limited resources to turn to for answers. I am fortunate that I have access to a Lyme literate physician who has a lot of experience in treating persistent/late-stage/chronic Lyme Disease, who is a short drive from my home, and provides care that is mostly covered by insurance.

Even with good care, at some point in my Lyme treatment, which has been ongoing for over a year now, I started to wonder: Even if I can eradicate this Lyme Disease infection, how will I get back to “normal?”

Being debilitated for nearly two years now, so much has changed, shifted, and transformed in my life. As far as my physical body, I have gained weight from inactivity, lost strength, and my stamina is much lower than it was pre-illness. Even if I can recover from Lyme, what kind of journey do I have ahead to get my body back to the health and strength and I once enjoyed? Regarding the neurological piece of my illness, will all of my cognitive difficulties, brain fog, and memory problems simply vanish when I am “better?” Will I get back my healthy mind? On the emotional front, I have experienced feelings throughout this illness that I previously didn’t even know existed! I have battled depression and anxiety. I’ve come to understand the special brand of stress that comes with a chronic illness – grieving for your old life, worrying for your future, panicking about money as medical bills accumulate, missing out on various opportunities and experiences, always feeling like you are letting people down by not being able to do things, being continually frustrated by your own body’s limitations; the list goes on!

So when I read an article about a new Lyme resource in the Boston area , The Dean Center for Tick Borne Illness, offering rehabilitation for Lyme patients, I was curious. I called them up, told them my story, and waited three months for an appointment.

With my past experience of being told by an Infectious Disease doctor to simply wait around to get better, and by a neurologist that I “don’t have Lyme anymore,” I was understandably skeptical. I also wondered if I was sick enough to warrant rehabilitation services. After all, the Dean Center is part of the Spaulding Rehab Outpatient Clinic, which treats amputees and people with far more debilitating conditions than mine. But I went in with an open mind.

I saw a physiatrist who listened carefully to my whole Lyme history, took diligent notes, and asked surprisingly attuned questions. He did a neurological exam, and gave me a neurological quiz of sorts. Then he started to tell me all the ways that he could help me.

He immediately suggested a PET scan of my brain, as many patients have had better luck with the PET than an MRI in getting physical evidence of Lyme effecting the brain. He scheduled the scan for me, right then and there, to take place the following week. I didn’t even have to do anything! He said that in patients like me, with a lot of neurological symptoms from Lyme Disease, the PET scan will often show areas of the brain that have been effected by the Lyme. “You can see it in the images,” he said. “It’s very real.” The results from the PET scan can help doctors to know just how much damage the Lyme Disease has done, and can also serve as justification for continued or more advanced treatment.

The doctor also gave me a prescription for speech therapy, which a neurologist had previously recommended to me, but I was unable to find a provider for. Now I can get this therapy right through Spaulding Rehab. Speech therapists can provide a kind of cognitive therapy that will actually help me rebuild my brain health, something which cannot simply heal overnight.

For the physical aspect of Lyme, I was surprised that I do qualify for physical therapy, also available through Spaulding, to help me rebuild my physical strength and stamina. Sick girl personal training!

And finally, the doctor acknowledged that dealing with this illness has been a trauma; that long term illness can cause or worsen depression and anxiety, and that with Lyme in particular, the added stress of having a disease that is so misunderstood cannot be discounted. He offered me a referral for counseling with a provider through Spaulding who, “really gets it.”

All in all, my first visit to the Dean Center was such a wonderful, affirming, hopeful experience. I will continue my antibiotic treatment with my Lyme doctor, and the services the Dean Center provides will work in conjunction with the medication. It just feels really great to have more people in my corner, addressing this disease from many angles, and helping me fight my way back to health.

At the end of my appointment, when the doctor shook my hand, I said, “Thank you so much. I really appreciate it.” To which he replied, “We’re just getting started.”

Lyme Disease Awareness Month: Tick Safety!

May is Lyme Disease Awareness Month. As someone who knew next to nothing about Lyme Disease before my diagnosis, I have come understand all too well the importance of awareness about this potentially devastating, but PREVENTABLE disease. There is so much misinformation about Lyme Disease! Spreading awareness about the FACTS is essential to bring down the rate of infection of Lyme Disease, which is rapidly increasing. Knowledge is power – read on to protect yourself and your loved ones!

PREVENTION

Use a Good Repellent

Lyme Disease has been reported on every continent except Antarctica. Ticks can be found just about anywhere – dense wooded areas are NOT the only places that pose a risk. Ticks can be found in the grass at parks, on the beach, in your front yard, etc. Most people know about the danger of deer ticks, but ticks can also travel around on mice and other small animals that live in non-rural areas.

picaridin

CLICK to view 20% Picaridin repellent on Amazon

permethrin

CLICK to view Permethrin clothes spray on Amazon

 

 

 

 

 

 

 

 

 

 

If you are playing outdoors, hiking, picnicing, etc, use a bug repellent that will protect you from ticks. Bug repellents with Picaridin are more effective than DEET!  If you are really getting out in the wilderness – camping or hiking for example – treat clothes and fabric gear with Permethrin spray. These repellents are reasonably priced and available via Amazon (click photos for direct links), or at fishing/camping stores.

Check for Ticks

After outdoor activities, check for ticks! Check around the edges of clothing, between toes, behind ears, in any fold/crease, in private areas, and in hair.

It is a MYTH that a tick must be attached for 24 hours in order for Lyme Disease to be transmitted. Lyme can be transmitted in minutes, and the faster you remove the tick safely, the better you protect yourself.

Here’s a handy chart of several kinds of common ticks in the United States. The ones at the bottom are as small as a poppy seed. The top two rows show the ticks as they appear during/after a blood feed.

Click to enlarge!

Click to enlarge!

 

REMOVAL

Remove Ticks Safely

pro tick

CLICK to view Pro-Tick Remover on Amazon

tick ease

CLICK to view Tick Ease on Amazon

tick twister

CLICK to view Tick Twister tweezers on Amazon

 

 

 

 

 

 

 

 

If a tick bite occurs, remove it quickly and safely! The three tick removers above all have excellent reviews and allow you to remove even very small ticks effectively. Consider purchasing one if you live in a high-tick area, do a lot of outdoor activities, have children who play outdoors, or have a pet that spends time outdoors. All of these cost between $5-$15 (a small price to pay for peace of mind!!), and are available on Amazon (click images to purchase). The Pro-Tick remover is even small enough to put on your keys or in a wallet, which is pretty cool!

It is NOT recommended to twist, crush, burn, or put any kind of lotion on the tick. Just grasp it as close to the head as possible with fine tweezers and pull firmly. ***The “Tick Twister” above recommends twisting to remove a tick. The tweezers will work without twisting, and that is preferable!!***

TESTING & TREATMENT

Get Yourself Tested & Treated

If a tick bite occurs, after removing the tick safely, the next step is to SAVE IT (see below), and contact your doctor for a Lyme Disease test. Ask your doctor for a Western Blot Lyme Disease test. Typically, the ELISA test is run first, but it is NOT RELIABLE. False negatives of the ELISA test are VERY COMMON. Insist on a Western Blot test if necessary. Many doctors will prescribe antibiotics before the test results come back. This is the safest way to go, as speedy treatment is the best way to combat Lyme Disease and prevent persistent or chronic infection.

If your Western Blot is negative, ask for a copy of it. Some tests are considered “negative” even though they are partially positive, and if this is the case with your test, you may want to consider treatment.

If you see a bulls-eye or halo type rash, ASSUME LYME INFECTION. Even if you have a negative ELISA and/or Western Blot test, assume that a bulls-eye or halo rash means you have been infected. The rash may appear minutes after a bite, days, or weeks. If you see a rash, take a photo to document it. Get to a doctor and DEMAND antibiotics. I am not kidding!! If a doctor refuses you antibiotics in the face of a bulls-eye or halo rash SEE ANOTHER DOCTOR. Head to an urgent care or ER if need be. The BEST way to prevent late-stage/persistent/chronic Lyme Disease is to be treated AS SOON AS POSSIBLE. Lyme Disease DOES NOT go away on its own, and the longer it takes for you to be treated, the more likely you are to have long-lasting complications related to the disease.

Know that the absence of a rash does NOT NECESSARILY MEAN the absence of an infection. Many Lyme Disease patients do not recall ever seeing a rash.

Get the Tick Tested

Lyme Disease testing of ticks is FAR MORE ACCURATE than Lyme Disease testing of humans, so it is a terrific way to find out if a bite has put you at risk for Lyme Disease. Save the tick in a ziploc bag with a moistened piece of paper towel. Even if the tick is broken or damaged, it can still be tested. Look up the phone number on your state’s government website for the Health Department. Some states offer FREE tick testing, and you will be not only gaining your own peace of mind, but also aiding your state in collecting data about local Lyme-infected tick rates. If tick testing is not available through your local health department, you can have your tick tested for $50 through Tick Report, a non-profit tick testing organization through the University of Massachusetts Amherst.

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I hope you have found this information helpful! Feel free to share! Knowledge is power!!

For more information about Lyme Disease and tick safety, or to find a Lyme literate physician in your area, visit ILADS.org

 

Adventures in Neurology

As a patient with neurological symptoms from Lyme Disease, such as brain fog, memory problems, difficulty with communication/word-finding, neuropathy (nerve pain), and drooping face, I have had two MRIs of my brain to check for any damage. These MRIs were completed several months apart. The first came back normal, and the second showed some spots in my brain which could be benign, or could be cause for concern.

Back in September, I saw a neurologist in hopes of finding out if there was any cause for concern with regard to my brain health. Due to a mistake on my part, she was not able to view the images from my MRI scans, but still examined me, and asked for a full history of my illness and treatment. She then treated me to a lecture about how I couldn’t possibly have Lyme Disease anymore, after all the antibiotics I’d taken, and that remaining symptoms don’t signify remaining infection. She criticized my doctor’s treatment plan (even though that is NOT her field of medicine), suggested some rehabilitation therapy that could be helpful, and sent me on my way.

Side note: Someone should award me a medal for self control, as I have not mailed her a nasty letter with photocopies of my three POSITIVE Lyme Disease tests, taken in September 2014, January 2015, and January 2016, evidencing a continued infection…BUT I DIGRESS.

With my neurological symptoms persisting as months passed, I tried to look for a neurologist in my area who was, at the very least, not a Lyme Disease denier. My search turned up nothing, nada, zilch. Finally, I was given a recommendation from one of the doctors at the practice where I am being treated for Lyme. He shared it with the caveat that this neurologist had been “okay for some patients.” Better than nothing!

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All my documentation in hand, hoping for the best!

I went to see this “okay for some patients” neurologist a month ago, and I am happy to report that it went very well! I had with me my January 2015 & 2016 positive Lyme Disease tests, and the discs of images from both of my MRI brain scans. The neurologist was kind, attentive, and accepted my Lyme Disease test results as what they are: FACTS. There was a technical problem with one of the MRI discs, so he couldn’t get a full picture, but with what he was able to see, his examination of me, and the details of my illness that I shared with him, he concluded, “Based on all of this, I don’t see a reason to be concerned about your brain.”

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After the appointment: exhausted, but happy

At the end of the appointment, I was ready to head out the door, and my wife thought to ask, “Wait, if there isn’t something wrong with her brain, why does she continue to have these symptoms?” Great question, babe! This is why she comes to appointments with me. The neurologist explained that the Lyme Disease has done damage to my central nervous system. Because there has been nerve damage, I can and will continue to have these issues like face droop, nerve pain, etc, when my symptoms are flaring, I am tired, etc. The persistence of these symptoms does not point to brain deterioration, rather a damage that has already been done, which makes my body more likely to respond to stress, tiredness, etc through those weak areas.

This means that even after a full recovery from Lyme Disease (which I am very much hoping / fighting for!!), I may still see these symptoms pop up throughout my life when I am tired, sick, stressed, etc. Only time will tell.

But – my brain is okay!!! My brain is okayyyy!!!!!!