I wondered if I had MS or Lyme disease. Or could I have Lyme disease and MS? Here in Part II of the story of my decades-long struggle with mysterious and sometimes debilitating health issues, I discuss my battle with Lyme disease. And if you haven’t yet read it, here is Part I.
Please note: As with all my health-related posts, this is in no way intended as a means for self-diagnosis or medical advice. This just happens to my story. And as always, if you suspect you or a loved one may have Lyme or any other medical condition, please seek help from a Lyme-literate or other qualified medical professional. Also, I am in no way affiliated with or receiving any compensation from any of the doctors or website owners mentioned or linked to in this post. These are merely professionals and/or websites that I personally found interesting, informative, and/or helpful.
As the Saga Continues…
Eventually, we were moved out of our travel trailer and into the house next door to Mom, and I joined the local YMCA. I faithfully worked out several days a week, despite the pain and exhaustion. I was extremely determined!
Two years went by, with my mystery illness improving in one or two areas, but getting worse in others. Then one day I was reading an article about Lyme disease, and many of the symptoms described were disturbingly familiar. Not only that, but this Lyme specialist said that the bacteria, a nasty little spirochete (corkscrew-shaped bacteria) called Borrelia burgdorferi, could live within a person’s body for years before the person would show symptoms.
I wondered if Lyme was at the heart of my mystery illness and if so, would treating it put me back on the road to good health?
With the move had come a new doctor, and I knew I should talk to her about Lyme testing. But I was hesitant. What if she thinks I’m a hypochondriac? What if she thinks there’s no way I could have it and refuses to test me? Then what will I do?
The thing was, many years before, during my first marriage, my husband and I had been backpacking in the mountains. Several days later, I noticed a gigantic, disgusting bite on my leg — a red, rashy-looking circle. Inside that circle was a raised flat area about the size of a half dollar piece. It was hot to the touch. And in the middle of that was a tiny hole.
My husband had taken me to the ER, where the doctor on duty immediately diagnosed it as the bite of a brown recluse spider. Except we don’t have brown recluse here.
She prescribed an antibiotic, which I promptly threw away after only one dose, as that one dose drugged me terribly for a good 24 hours: when I wasn’t sleeping, I was wandering around the house like a confused zombie. I refused to spend the next to weeks in a drugged stupor.
No doubt you’re wondering why I didn’t simply call the hospital and ask for another antibiotic. Um, because I was 19. And perhaps not all, but many teens and young adults tend to think they know everything, and I was no exception!
And now, here I was years later, researching Lyme Disease and finding that not only did I have many of the classic symptoms, but also that Lyme has often been misdiagnosed as spider bites. Still, I waffled.
Then the MS symptoms returned.
Lyme Disease and MS?
This time it began as weakness in my legs that did not go away. It wasn’t as intense as before, although it got to the point where I didn’t go anywhere unless my husband could drive me, because I simply couldn’t trust my legs to work as they should.
A few weeks after this began, my daughter came to visit. She too had been having some health issues, and after months of research had decided to try some essential oils. She was buying them online and received a started kit with her first order and, worried about me, she paid me a visit and brought along her box of oils.
“I don’t know if any of those will help you,” she said as she handed me the box, “but you’re welcome to try any of them.”
I spotted a bottle of oregano oil and remembered having heard a radio interview with a doctor many years before, in which the doctor sang the praises of this oil. Supposedly if it was a high enough quality, pure oil, it could work like both an antibiotic and antiviral, but without the side effects.
I also knew several people who swore by its ability to shorten and lessen both the time and intensity of colds and flu, or even stop them in their tracks altogether. Why not? I thought. It’s worth a try. I chose the oregano, learned how to use it, and began taking it three times a day.
From Bad to Worse
Three days later, an unusually beautiful Sunday in early ’15, we were leaving church when I began walking like a drunk. I made it to the car with my husband’s support, insisting that we needed to stop at the grocery store and that I would make it.
He dropped me off at the front door so I wouldn’t have to walk so far. Knowing he’d catch up with me quickly, I grabbed a grocery cart and headed down an aisle, leaning on the cart for support.
Suddenly my legs nearly gave out, and I knew if I didn’t sit down, I would fall down. I barely wobbled back to the front entrance and threw myself into an electric cart just in time. When we were done, my husband had to go bring the car to the front and help me get in.
WHAT?! Why am I worse? I had a doctor’s appointment coming up, and decided it was time to talk to her about being tested for Lyme disease. At first, I thought maybe it was both Lyme disease and MS because the symptoms I was having were some of the textbook symptoms of MS, just like I’d had a few years prior.
On the other hand, I had learned that Lyme can mimic MS and many other diseases, hence its nickname, “The Great Imitator”. I had even read of people’s MRI scans showing the brain lesions that are typical with MS and therefore being diagnosed and treated for MS, only to learn later that the real culprit was Lyme disease.
My muddled mind went back and forth. Lyme disease? MS? Lyme disease and MS?
The Lame Can Walk!
Then suddenly, four days after that awful trip to the grocery store, my legs were working just fine. For the first time in a month, I was able to not only drive, but I went out by myself and ran four errands! It was a miracle.
Then came my doctor appointment. Summoning up my courage, I told her about how many of the symptoms both old and new, matched up with a lot of the symptoms of Lyme disease. I finally asked her about testing.
She immediately agreed that I needed to be tested, and even found a Lyme-literate doctor in Seattle.
I had to wait for over a month to get in to see the new doctor, so I continued taking not only the oregano oil but based on research, added five others my repertoire: Melaleuca (tea tree oil), cassia, thyme, clove, and black pepper.
I bought a bag of empty gel-caps at the health food store and filled them with three drops of each oil, taking one capsule twice daily.
[I have to insert a note of caution in here. Many health practitioners believe that no essential oil, no matter how food-grade pure or high-quality, should EVER be ingested. At best, they think that IF a patient ingests essential oils it should only be due to there being little choice, as in, a choice between potentially dangerous antibiotics and e. oils. And then they should only be taken under the care of a professional with experience in this area, and with plenty of precautions such as probiotics, rotation, etc. My own doctor (although not my former Lyme doctor) believes this. So please, don’t run out and buy e. oils and empty caps and start popping e. oil pills without checking with an experienced professional!]
Finally, an Answer
When I was able to see my new doctor and speak with her about my history and symptoms, she strongly suspected I did indeed have Lyme disease. When I got to the part about those strange MS-like symptoms getting much, much, worse three days after starting on the oregano oil, she told me she was almost sure I had Lyme!
She said what I’d experienced sounded exactly like what is called a Herxheimer reaction, or herx.
Explaining, she told me, “Look, let’s say you have pneumonia. You go to the doctor and get an antibiotic. Now once the antibiotic kicks in, you don’t feel worse — you start feeling better, right?” Having had pneumonia just the year before, I could attest to that.
“But with Lyme patients, it’s different,” she went on. “When they’re given antibiotics, once the antibiotics kick in they get worse for a few days, before starting to feel better. And as their treatment progresses, they may get these ‘herxes’ periodically as the spirochetes die.”
Of course, we still had to wait for my test results.
A few weeks later, the results and the official diagnosis were in: I had Lyme disease.
Not that it would have made a difference if the test had come back negative because with Lyme, it’s far too common to have false negatives. But never a false positive, which I’ll discuss more in later posts.
My doctor thought the essential oil protocol I had put myself on after my research was a fantastic one, although she did offer to put me on antibiotics instead.
I refused, saying that I wanted to try everything possible that was natural, then if all else failed, I would try antibiotics. She agreed and prescribed several other natural things to help my immune system and organs that were being affected, plus probiotics.
This was because essential oils, and especially super-potent oregano oil, will wipe out the good gut bacteria the same as antibiotics will. But unlike antibiotics, other than this, I suffered none of the awful side effects antibiotics are capable of.
Improvement and Some Mysteries Solved
Four months later, I found my birth family, and five months after that, I flew off to Atlanta for a two-week stay with them. Just several months earlier I would not have been able to do this on my own, as the Lyme bacteria can cross the blood-brain barrier and wreak havoc.
Thus, I had become chronically airheaded, forgetful, and confused. Add to that the fact that I hadn’t flown since the late ’90s when flying was easy and uncomplicated and — well, I’m sure you get the picture!
I also found out why my eye surgery seemed to plunge my body into the abyss again, after having had so much energy and excellent while on the Atkins diet.
- While the Atkins diet included far more dairy than I should have been eating, it at least was grain-free. Plus I was eating tons of garden-fresh veggies every day. This, plus all the other healthy things I was doing, helped put the Lyme temporarily into remission.
- When I had to put the steroid drops into my eyes after surgery, they got into my bloodstream and suppressed my immune system, which had been valiantly keeping the nasty Lyme critters at bay. Taking steroids is one of the worst things that someone with Lyme can disease can do. The Lyme bacteria reproduced at a rate that would make rabbits blush, and it was all downhill from there.
Which begs the question: why in the world would I even be so ultra-sensitive to some silly steroidal eye drops? For that matter, why was I sensitive to the antibiotics the doctor gave me all those years ago for the supposed spider bite that was really a tick bite?
And there were other occasions when I’d reacted badly to various drugs — like the Percodan I was given when I had all my wisdom pulled (in one sitting!), the morphine they gave me when I had my appendix out, and the nitrous oxide when I had my mercury fillings removed.
It was due to my MTHFR mutation, which I wrote about in this post. If you haven’t read it, I encourage you to do so, because this genetic mutation is extremely common, with estimates of thirty to fifty percent of the population having this genetic mutation.
I stayed on the essential oil protocol for over two years, before finally tapering off and stopping them altogether. Did it wipe out the Lyme, down to the last spirochete? I don’t know. I haven’t had an appointment with my Lyme doctor in over a year, and re-testing wouldn’t give us a definitive answer anyway.
But what I do know is, I haven’t had any Lyme symptoms in well over a year, either. So, since all of my health issues for all those years were due to Lyme, I’m healed, in great shape, and in perfect health, right?
Not so fast. Although many of the things I went through were certainly caused by Lyme disease, it can’t be blamed for all of it. My inability to assimilate vitamin B12, for instance, thus resulting in pernicious anemia.
And my inability to assimilate much of any of the nutrients from food, for that matter. Although I was retested and my stomach acid production had vastly improved, meaning I no longer needed to take HCl, it was still a bit slow getting started, so I do need to take digestive enzymes with my meals.
Yes, healing from Lyme caused me to feel so much better, it’s almost impossible to describe! I regained much energy and, in conjunction with using Dr. Caroline Leaf’s 21 Day Brain Detox, got my mind back. The horrible MS symptoms have never returned.
Yet, the fibromyalgia and chronic fatigue remained (although there is a world of difference in my energy levels — just goes to show had bad my Lyme-induced fatigue really was!). And I still have either gluten intolerance or celiac, IBS, and Hashimoto’s. But I’m working on it, as you will see.
Among many other things, I was also diagnosed several years ago with leaky gut, which I never managed to heal. And through it all, the weight has never come off, no matter what I’ve done. The best I’d managed to do since that Atkins diet so many years ago was last year when I tried Weight Watchers.
I worked very hard at it and as usual, was in the gym or the pool five days a week.
After seven months of deprivation and hard work, I lost a whopping seven pounds. I’d come to the conclusion that the weight would never come off unless I could either effectively detox (because toxins live in fat cells), or get rid of my body’s chronic inflammation, or both.
Lyme disease alone can cause many auto-immune issues, but since none of mine went away, even though I was so much better, I began to suspect that they were at least partly the result of inflammation.
Inflammation — the Ugly Parent of Autoimmunity (and pretty much anything else you can think of)
There’s a reason inflammation is the new buzzword in medical circles. Inflammation affects the body on a cellular level, so it’s no surprise that chronic inflammation is implicated in diseases like cancer, and food allergies and intolerances.
Virtually every gut issue out there (like IBS, Chron’s, ulcerative colitis, etc.) and virtually every autoimmune disease (think rheumatoid arthritis, lupus, Hashimoto’s thyroiditis, and other thyroid issues, among many others), can happen courtesy of inflammation.
Here are just a few of many other conditions that can be caused by chronic inflammation:
- Neurodegenerative conditions (MS, Parkinson’s, Alzheimer’s, etc.)
- Metabolic disorders (like diabetes and obesity)
- Chronic Fatigue Syndrome
- Heart Disease/Heart Failure
There are other things besides inflammation that can cause many of these symptoms and diseases. Lyme disease has often been found to be the culprit, as has the MTHFR mutation. And of course, Lyme can also cause inflammation.
So, what if a person has both or, God forbid, all three? Is he or she double or triple-cursed? Well, I prefer to think of it as double or triple-challenged. And in case you were wondering, there is something we can do about it!
It’s Always Something
I know because I had all three. I have overcome Lyme disease, am learning to manage (so yeah, overcoming) the genetic mutation, and am in the process of overcoming the chronic inflammation, through the autoimmune diet, known more formally as the Autoimmune Protocol.
The AIP works in several ways: it removes the foods that are the most common allergens that people are the most likely to be sensitive to. That way, when you eventually begin to slowly reintroduce those foods, you’ll know which ones trigger a reaction.
It doesn’t have to be an allergic reaction, per se. It could just be that a certain food causes pain, makes you feel sleepy, or irritable, or whatever.
It also removes foods that are difficult to digest — think legumes. It removes foods that may or may not be difficult to digest, but they are (or can be, depending on the individual) hard on the gut.
Things that may surprise you, like soy, dairy, and egg whites; along with all grains, nuts, and seeds, and alcohol. It eliminates all sugar and sweeteners, except for raw honey and real maple syrup.
And finally, it removes foods that are known to cause inflammation and/or pain in many people, like nightshades. Some of the foods in the nightshade family are all types of peppers (not peppercorns), all potatoes except sweet potatoes, tomatoes, eggplant, and tomatillos.
Along with the nightshades go cooking oils like canola, safflower, and vegetable; plus seed and nut oils. The first three are eliminated because these oils can also bring on or worsen inflammation, and the seed and nut oils are eliminated because seeds and nuts are things that many people are sensitive to, even if they don’t have a full-on allergy.
And don’t forget the caffeine!
That One Thing
Whew. Have I left anything out? No doubt I have, as admittedly, the list is extensive. I won’t lie, it was a hard thing to do, giving up so many foods I loved — many of them healthy foods!
But I guess that at some point in our lives, many of us come to that final crossroads…we’ve tried everything we know. We’ve seen many, many, different experts. We’ve spent many years and many thousands of dollars, not to mention the time and energy — so much that the cost has become incalculable.
We’ve worked so hard. Friends, lovers, and sometimes even spouses have gone AWOL, never to be seen again. We’ve prayed and cried, given up, fallen down, gotten back up and tried again. And again.
But finally, it comes down to doing the one thing we’ve resisted doing, sure that there was another way. An easier way. For many of us, myself included — that one thing, whatever it was, was unknown to us in the beginning. And maybe we didn’t even learn about it for a long, long, while.
But I suspect that for most of us, once we finally did learn about that one thing that would likely be the answer to at least one of our prayers, we resisted. Because we were tired of giving up things that we loved. Tired of spending boatloads of coin and getting little in return. Tired of working so damned hard for so little gain. Tired of sacrificing.
But what we do when we finally reach the crossroads may mean life or death.
Next week, I’ll go into more detail on the Autoimmune Protocol, plus let you in on how I’m doing on it. I can be your guinea pig! Check back here next week, or use the time to catch up on older posts, or best of all, subscribe and have every post delivered right to your inbox!