The Roller Coaster of Lyme Disease!

Sunday, March 8, 2020 – 10:18AM …

As I type this, I am absolutely miserable. The last few days have been way worse than usual … symptoms have increased and intensified … headaches, neck pain, joint pain, nausea, loss of appetite, brain fog, anxiety, and debilitating fatigue (the kind where you feel like someone shot you with a tranquilizer). I keep telling myself, “You’ve been here before. You know what to do. Just ride the storm. This isn’t permanent. It’ll pass.”

Honestly … this gets so old! Lyme Disease is a roller coaster that I NEVER volunteered to be on and it won’t let me off!

Lyme Disease is a roller coaster that I NEVER volunteered to be on and it won’t let me off!

I loathe when I have a few decent days, and then plummet back down into the pit of misery. The few decent days always get my hopes up that I’m on the path to recovery, and then that hope eventually fades like a mirage in the desert. That’s what I mean by Lyme Disease being a roller coaster. It’s up and down. Recovery is not linear. If you have it, then you know what I’m talking about.

Yesterday I talked with a few of my Lyme friends about how I’m feeling. That always helps me. Bottling it up makes me irritable or anxious or depressed or all three of those. Many of my Lyme friends are also having a harder time than usual. My friend Jessica Donaldson believes it’s because of the “super moon” that is upon us.

I know that sounds cooky, but from my personal experience, I do believe there’s something to it. Over the last year, I’ve noticed that I typically feel worse during during a full moon or new moon.

But why? … What’s up with that?

Here’s one explanation that I came across that fits my situation …

Parasites. They are the main culprits for the flare-up. We may not like to think about it, but inside of our bodies, most of us have worms, unwanted parasites that we are not even aware of. If not addressed properly, a parasite infection can hinder the healing and it can even lead to other serious health problems. Around a full moon, not only the Lyme patients will feel worse, but also those who have parasites, because during this time, the parasites’ activity peaks, causing us, the host, to feel unwell. The parasites are active during the full moon too as it is their mating season. Every couple of weeks, the parasites and bacterias hatch and form new babies. To be more precise, the spirochetes have a reproductive cycle each 28-30 days, which coincides with the full moon cycle. The flare up is due to the fact that during this period of time the spirochetes are far more active. As for the co-infections, they have a 3 to 5 days cycle, which explains the ups and downs on the symptoms experienced by patients.

Source: https://a-zlyme.com/full-moon-and-lyme-disease/

On top of battling Lyme, I recently found out that I tested positive for SIBO (Small Intestinal Bacterial Overgrowth). Over the last 5 months that has been the main source of my excruciating left abdomen pain, increased headaches, increased brain fog, unusual looking diarrhea (I’ll spare you the pics), increased anxiety, loss of appetite, and major weight loss (30 pounds people).

To treat SIBO, I recently began taking two powerful homeopathic meds: Bacteria Tox and DysBiocide.

HOLY WATER BUFFALO! Dude, I ended up coming off of the Dysbiocide, because the combination was too much at once. It was causing some serious die-off (herx reaction). That … plus the super moon thing … I was praying for Jesus to come back immediately!

As I said at the beginning of this blog post, I am absolutely miserable right now, but trying to stay positive. It’s not easy during these times in the pit. For some guidance and encouragement in my battle with Lyme, I’ve been reading through the book, THE HEALER WITHIN by Holly Chameli. She has recovered from Chronic Lyme, Chronic Fatigue Syndrome, and Autoimmune Disease. Yesterday, I highlighted this quote because I TOTALLY relate …

A chronic and debilitating illness can feel like being buried alive. You do not technically have a terminal disease, but you feel like you are in the midst of dying every single day. The losses are many. Obviously, the pain of feeling sick every day is enormous, but so too is the sense of total loss when you can no longer be the parent you once were, maintain a career, socialize with friends and family, or simply grocery shop. Yes, you are living, but you may feel dead inside. Keeping your head above water during the healing process is certainly challenging, but you must stay positive. How do you do this?

THE HEALER WITHING by Holly Chameli – Page 141.

She then goes on to give advice on how to stay positive … that’s the chapter I’m into right now. So I’ll have to get back to you.

2:38pm …

At lunch time, I finally got my butt off the couch, took 4 Advil for my head and neck pain, and then drove to the pharmacy to pick up a prescription for my SIBO. After that, I ate a burrito bowl from Chipotle (white rice, chicken, a little bit of mild salsa, and guac). About 30 minutes later, I began to feel some improvement.

Thank You, God

I went to Walmart and picked up a few needed items, and then hit Starbucks for a small coffee. Then I came home, cleaned up the kitchen, and vacuumed the house. Now I’m finishing up this blog post, then I’m going for a short walk in the neighborhood to soak up some sun. My brain fog has even cleared up. Again, thank You, God! I have been praying all day for some much needed relief. Not sure how long this will last.

Hang in there my Lyme friends. You are NOT alone in this battle. I know it is EXTREMELY difficult. I know there are days when you feel like you are going to have a complete breakdown or worse. Again, you are NOT alone. I encourage you to reach out to other Lyme friends or a Lyme Support Group or a Lyme Counselor/Therapist. I also encourage you to keep crying out to God and seek Him by reading the Bible. Lately, I keep meditating on Psalm 103 and praying through it. Check it out. It’s a good one.

Battling with you,

Jason

On Friday night, my wife and I went out on a long-overdue date. As you can probably tell from the pic, I was not feeling well, but did my best to focus on her.

My Backstory with Lyme – Part 3

So as I said in my last post, after my Primary Care Physician decided that I didn’t actually have Lyme Disease because I didn’t “technically” meet the CDC’s standards (CDC = Center for Disease Control), she referred me to a Neurologist and also wanted me to have a sleep study done. The sleep study sounded ridiculous to me so I never had it done, but I did make an appointment to see the Neurologist. I had to wait four months to meet with him. Crazy!

When I finally met with him, he asked me some basic questions about my symptoms and then did some basic testing of my strength, balance, focus, etc. Apparently I passed with flying colors. At that point, he didn’t really know what to do with me, so he suggested I get a CAT Scan done and go see an Infectious Disease Doctor. I thought to myself, “Wait, what? An Infectious Disease Doctor? So you think I might have an infectious disease?” This was all so confusing.

I was ready to schedule the appointment with the Infectious Disease Doctor, but a friend told me that it’s pointless to see him because he doesn’t even believe that late-stage or “chronic” Lyme Disease is a real thing. She said he wouldn’t even consider that as a possible diagnosis. I didn’t know what to do. I began second guessing myself, “Maybe I don’t have Lyme Disease? Maybe I have something else going on? But why was my ELISA Test positive and why did I have four out of ten positive markers on my Western Blot Test? What the heck?” Something didn’t seem right to me. It was time for me to do some serious researching and networking to try and figure things out.

I talked to my friend Stephanie who had suffered through a long and difficult battle with Lyme Disease and she told me that many people who have Lyme Disease don’t meet the CDC’s requirements and that there are many “false-negatives” with Lyme testing. After talking with her, I decided to schedule an appointment with a doctor who helped her with her Lyme Disease. She told me that he specialized in treating patients with Lyme Disease and other tick-related infections. He’s what’s referred to as a “Lyme Literate Medical Doctor” or “LLMD.” Even though he’s a legit M.D. (Medical Doctor), he has to operate outside the medical establishment just because he believes that Late-Stage or “chronic” Lyme Disease is a real thing and he’s not afraid to treat it. I found out that’s a big NO-NO with the medical establishment. In fact, some doctors have actually lost their license over it.

I drove two hours to see this LLMD (Dr. Paul Beals at Chesapeake Wellness Center in Stevensville, MD). My first visit cost me $450. Unfortunately, my insurance wouldn’t cover a dime because the medical establishment doesn’t recognize “late-stage” or “chronic” Lyme Disease. I didn’t care! I desperately needed help. At that time, I was having increasing difficulty functioning with work, ministry, and just everyday life. All of the essential oils that Meagen and Stephanie sent me definitely helped reduce some of my symptoms, but they weren’t enough. I needed more.

Dr. Paul Beals doesn’t do small talk. I sat down in his office and he got right down to business. As he looked over the results from my Lyme Test and Blood Work, he began circling things and drawing lines. He then grilled me with a series of questions about my history of symptoms. He was furiously scribbling notes the entire time I talked. We talked for well over an hour. Contrary to my Primary Care Physician, he was absolutely convinced that ALL of my health issues were completely the result of not only Lyme Disease, but also co-infections like Bartonella and Babesia. I wanted to cry. Just to be fully heard and have a legitimate and confident diagnoses from a medical professional felt like coming out of a dark fog.

Dr. Beals immediately launched into a detailed scientific explanation of what Lyme Disease (Borrelia Burgdorferi) and the co-infections (Bartonella and Babesia) can do to a person if left untreated. All of it was new information … with terms like spirochetes, biofilms, biotoxins, stealth pathogens, neurotoxins, the blood-brain barrier, mycoplasma, Bell’s palsy, neuropathy, mitochondrial dysfunction, adrenal fatigue, Herxheimer reactions, detoxification, etc. It was OVERWHELMING! I took as many notes as I could, but it was just way too much for me to write down and comprehend in one meeting.

After that avalanche of scientific information buried me, Dr. Beals then began laying out my treatment plan. He gave me a prescription for antibiotics (Cefuroxime Axetil 500mg). He also told me I needed to completely change my diet by eating organic as much as I could and completely avoiding white processed sugar, dairy, gluten, and processed foods. He also told me that I needed to take a good multivitamin 3xs per day and take extra Vitamin C and Vitamin D. He also told me to take a good probiotic at lunch and bedtime (away from the time when I take my antibiotics). He also prescribed Trazadone and said it would help with my insomnia, stress, and anxiety. I immediately gave him pushback on the Trazadone. “I don’t want a med to help with my stress and anxiety. I’m already taking one.” He said he prescribes Trazadone for all of his Lyme patients and that it will totally end my insomnia … and then he told me how crucial sleep is to overcoming Lyme. He also assured me it was not habit forming and I could easily come off of it.

“Where have I heard that before?”

He insistent that I needed it and kept repeating that it was perfectly safe. Because he was a “Lyme Literate Medical Doctor,” I listened to him. I was desperate and willing to do whatever it takes to get rid of this #@$&@ disease and all the other nasty co-infections that came with it.

At the close of our meeting, he again mentioned this thing called a Herxheimer reaction that could result from taking the antibiotics. He said that when it happens, I would need to take Alka Seltzer Gold and drink lots of water. I had no idea what a “Herxheimer reaction” was. He really didn’t explain that very well, nor did he warn me of how horrible they can be, but I would soon find out! Fun. Fun. Fun.

Dr. Beals repeatedly told me that it takes Patience, Persistence, and Pills to overcome Lyme. Those were his three P’s … like he was some sort of Southern Baptist Pastor giving alliterated sermon points. I shook my head. Anyway … when Dr. Beals used the term “pills,” he was referring to antibiotics. I would soon find out that if one antibiotic didn’t do the job, he’d put you on a different one, and if that one didn’t do the job, he’d put you on a different one, and if that one didn’t do the job … you get the picture. He wouldn’t stop with the antibiotics! His primary approach to treating Lyme Disease and co-infections was with hardcore antibiotics.

He also warned me that there’s no quick-fix or easy cure to treating Lyme Disease and co-infections. I was like, “What do you mean? How long we talking Doc? A month? Two months? I got stuff I need to do with my life, family, business, and ministry!” He told me it could take years. My jaw hit the floor … “You’ve got to be kidding!”

He wasn’t kidding.

I didn’t like his answer (not at all). However, I left his office feeling quite optimistic and hopeful. “Bring on the antibiotics! I got this!”

Dude, I had no idea what I was in for! My arrogant @$$ was about to be humbled, broken, transformed like never before!

I’ll share more about my backstory with Lyme Disease as soon as I can. I only write when I feel well enough to. Unfortunately, this summer has been extremely hard for me. I’ve had a major setback in my recovery/healing. On top of all of the “normal issues” that I’ve been working so hard to heal, I found out this week that I may also have parasites. I’m not even kidding! The last two days have been ABSOLUTELY MISERABLE … I’m talking on the floor in a fetal position, moaning in pain! I’m going through all sorts of fun test this week (sarcasm). Tonight, I’m extremely thankful that I’m feeling well enough to write and finish this post. Thanks for taking time to read it.

If you’re battling Lyme Disease or some other chronic illness or disease, you’re not alone in your suffering. Don’t lose hope and don’t give up! This was my prayer this morning …

“But You, O Lord, do not be far off! O You, my help, come quickly to my aid!” – Psalm 22:19 ESV

Battling with you,

Jason

Me and my youngest daughter Gabrielle on a dinner date!

I’m not a medical professional. The content of BattlingLyme.com is for informational purposes only. The content is not intended to substitute for professional medical advice, diagnosis, and treatment. Always seek the advice of your physician or other qualified health provider with any questions or concerns you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on BattlingLyme.com