I frequently get asked about my regimen. I’ve been hesitant to share, as I’m not a doctor, and I don’t want anybody acting on my advice without consulting their own trained professionals.
Also, I have learned each person and each Lyme case is unique. What works for me may not work or even be appropriate for somebody else. I always say if you line up 10 people who recovered from Chronic Lyme Disease, you will find 10 different stories.
However, my goal is to use my experience to help others, and I can’t really do that without telling what I’ve done. Please, please use this for educational purposes only, and if you think something that helped me might help you, please talk to your doctor before doing anything.
Before we get to my treatment plan, we have to start with the diagnosis.
I was diagnosed with an Acute Lyme infection in August 2005 via the Western Blot. I never saw the tick, but I had classic acute Lyme symptoms: high fevers, intense body aches, drenching night sweats, severe headaches, a horrible feeling of malaise, and a mild case of Bell’s Palsy.
I should note it took three trips to the doctor before I was properly diagnosed. I was repeatedly told I just had a virus, but somehow I knew it was more than that, so I stayed persistent.
I was given 19 days of antibiotics for the Lyme and 10 days of prednisone for the Bell’s Palsy, and told I would never have any more Lyme issues. If only……
In August of 2009, my digestive tract shut down almost overnight. The next four years were marked by worsening digestive issues, and the onset of new issues: significant fatigue, brain fog and a general sense of malaise. These years were also marked by endless doctor visits and therapies, none of which brought me closer to a cure.
Finally, in Summer of 2013 I was referred to a Lyme Literate Doctor who suspected chronic Lyme Disease. He ordered a Lyme test from Advanced Laboratory Services. My doctor says this test is the gold standard because the lab cultures your blood and can actually see the Lyme spirochete. Once your blood is drawn, it can be anywhere from 10 days to 3 months before any growth shows up in your culture. Mine came back positive after just 10 days. Bingo.
After four years, I thought I was finally at the beginning of the end of illness. I figured I’d be well in no time. As it turns out, Chronic Lyme is a cruel and unrelenting foe, and things would get much, much, much worse before they got better.
When I started treatment, my global issues were:
- Seriously compromised digestion (slow motility)
- Brain Fog
I had other attendant issues:
- Heavy metal toxicity
- Poor detoxification ability
- Black mold in my GI tract
- Bad gut bugs in my GI tract
It’s a bad stew, and it took years of patience, persistence, trial and error to bring it to some sort of order. It was like peeling an onion. We’d take care of an issue, think it was THE issue, only to discover there was yet another layer of the onion to be addressed. Let me tell you, it turned out to be ONE BIG onion. But we kept peeling and dealing, and ever so slowly, things started to turn around.
I cannot stress enough that nothing happened overnight. This was a long, tedious process that took dedication, commitment, and a determination to never give up no matter what. I never could have done this alone. My husband was steadfast, strong and unrelenting in his support, and he is followed by a long list of angels who helped me along the way. I will forever be grateful to any person who ever laid a healing or helping hand, thought or prayer on me.
Ok, that was a big pre-amble, so let’s get to the heart of it. I have done so many things that it’s hard to capture them in a simple way, but I will do my best to give you a loose chronological order of my Lyme battle which started in June 2013 and continues as I write in December 2016.
For starters, my Lyme doctor told me we had two jobs:
- Kill the infection.
- Deal with the issues caused by the infection (hypothyroidism, heavy metals, etc.)
This sounded rational and simple, but proved to be anything but. Here’s how it unfolded.
1. Kill the Infection.
There is significant controversy about the best way to kill Lyme, with long term antibiotic use being at the forefront. Some Lyme doctors say you’d be crazy not to take antibiotics, others say you’d be crazy to take them. I prefer a natural approach, so my first instinct was not to take them. However, I had already been very sick for four years by the time I was diagnosed. I was fatigued, losing weight and scared. I was desperate to get better, and the antibiotics seemed like the most direct way to that end.
How wrong I was, but I couldn’t have known that at the time.
In short, antibiotics were a disaster for me. I do believe they did some work toward killing my infection, but I felt like I was being killed in the process. When Lyme bugs die, they release toxins, and often these toxins are released faster than your body can handle them, and you end up feeling very sick. This reaction is called a Jarish-Herxheimer Reaction (Herx for short) and is named after the two doctors who identified the phenomenon.
In my case, my Herx reactions were very severe. My brain turned to cotton candy, making it impossible to think straight, I had nausea that rendered me immobile at times, and a general flu-like feeling of malaise that tied me to the sofa. I would sit with my head in my hands for hours and days at a time. Here’s a photo of when a Herx struck at a coffee shop:
One of my husband’s enduring images of my Lyme battle is me with my head in my hands. If he had a quarter for each occurrence, he’d be a wealthy man.
Since my reactions were so severe, we originally thought I was having an adverse/allergic reaction to the medication. So, we tried several different antibiotics, and I tried taking them several different ways – every other day, smaller doses, a few days on a few days off – but the result was always the same. What I call Herxtown USA.
I had the exact same symptoms with each different antibiotic, which led my doctor to conclude my issues were most definitely from Lyme die off versus a bad reaction to the medication – he said if I was reacting negatively to the medication I would have different reactions to each medication because they were coming from different families.
Finally, after 7 months, I gave up the antibiotic ghost and said I couldn’t do it any more.
Enter Herbal Antibiotics.
After 7 months of oral antibiotics all my symptoms were worse than before I started, my weight continued to drop, and it was clear we were not even close to killing the infection. Something else had to be done, but I simply could not take another antibiotic.
It turns out there is such a thing as herbal antibiotics. They are just what they sound like – herbs in very high concentration given in combination in a specific protocol, and they are supposed to be easier to tolerate than traditional antibiotics.
My doctor prescribed the Cowden Protocol for me. It comes in kits of one month supplies, with very detailed instructions. Each kit contains several dropper bottles of different herbs, along with a guide for how many drops of each herb to take each day of the month. It sounded manageable.
I had the same severe Herx reactions to the herbal antibiotics. I gutted it out as long as I could, but eventually had to stop after a few months. I was willing to endure just about anything to get better, but I simply could not take the bone crushing fatigue, nausea and cotton candy brain any longer.
This was a dark time. Now roughly one year in to my Lyme battle, I felt dramatically worse than when I began. Where to turn now?
From the outside, it looks like I’ve tried a lot of goofy things. It’s true I did a lot of things. Whether or not they are goofy, depends on your perspective. I do believe roughly 95% of what I did helped me in some way. The big exception is homeopathy.
Feeling desperate at failing on both traditional and herbal antibiotics, I was open to just about anything. By chance, a friend of somebody who is famous (who I am not naming to protect their privacy) told me this person had Chronic Lyme and was pursuing a course of homeopathy that seemed to be helping. Through my friend, I was able to talk to said famous person and left the call feeling hopeful. I figured this person had access to any treatment and any doctor they wanted, so if they were going this route, it must be a good one.
I entered into a long distance homeopathy relationship with a doctor I won’t name. I gave it several months, and in short, I don’t feel it did anything for me. I learned that medicine is best practiced face-to-face, and I didn’t feel any relief from the homeopathy remedies.
Having said that, I’d like to make a disclaimer that some people swear by homeopathy and are convinced it helps them. I mean no disrespect to these people or homeopathy practitioners. It just didn’t work for me.
Just as I was starting to waiver on what to do next, the decision was made for me in a way. One morning I woke up with a deer tick in my arm, and there was already a rash! Upon that discovery I unleashed a string of expletives that was spectacular in length, volume and creative use of the f-bomb.
My first call was to my Lyme Literate doctor who I had left (on good terms) when I pursued homeopathy. My first question was can you get a new Lyme infection if you already have Lyme. The answer is yes. More expletives. My doctor said if I did have another infection it would be in my central nervous system within 48 hours. He recommended taking a proactive “scorched earth” approach of a 10 day course of antibiotics. He’s been treating Lyme since 1981, and he is a leading expert here in Minnesota, so his advice was hard to ignore.
But antibiotics again? Really? My Herx nightmares were still way too vivid.
To get a counter opinion I talked to my Homeopath, who of course said I absolutely should NOT take the antibiotics.
With the clock ticking, my husband and I went back and forth in conversation with each other and with the Homeopath and my Lyme Doctor. We were literally caught between two worlds – East and West. And caught between two medical professionals giving conflicting advice. So it fell to us, the only people in the conversation who had NOT gone to medical school to make the decision.
We chose the antibiotics.
We ended homeopathy and went back to my original Lyme doctor.
Yes, I got sick again from the antibiotics. But it was only for 10 days.
At this point I was 150% exhausted on trying to kill Lyme. In addition to feeling like I wasn’t getting anywhere, my digestive issues continued to get worse. So, I decided to zig. I decided to forget about the Lyme for a while and focus instead on trying to heal my gut.
Again with the support of my original Lyme Doctor, I decided to see another Lyme Literate doctor who also happened to specialize in GI issues. The doctors knew each other, which made the transition easier.
Very long story short, I met with the new doctor (4 hour round trip), and he ordered several rounds of extensive GI testing. Then I had to wait three months to meet with him again for the results, which highlights one of the many problems with battling Chronic Lyme – too many patients, not enough doctors.
At any rate, my tests revealed my gut was a disaster. I didn’t really need a test to confirm that, but now we had a roadmap of the destruction. My gut was littered with bad bugs, and black mold.
I was a disaster in other areas as well:
- My mitochondria (the powerhouses of our cells) were a disaster – my doctor said they were some of the worst he had ever seen.
- I had heavy metal toxicity, along with high concentrations of other random environmental toxins (Lyme is considered a neurotoxic illness, meaning it tends to make patients even more vulnerable to absorbing toxins of all types).
- I have terrible detoxification ability. This would explain why the antibiotics made me so sick – I simply did not have the ability to process the toxins as quickly as they were being released by the dying Lyme spirochetes.
- A brain test confirmed that my brain was indeed, cotton candy. I scored very low in certain cognitive functions, which was abnormal for me, as I was quick and sharp before getting sick.
- The brain test also demonstrated my brain would get locked in “flight or fight” mode, which is only supposed to happen when you are running from a bear. However, this occurred in a dark, quiet room, when I was breathing deeply and feeling relaxed, as per the instructions for the brain test. When I told my doctor I didn’t understand how my brain could be locked in flight or fight when I thought I was relaxed he said “maybe things have gotten to the point that what feels relaxed to you feels like running from a bear to me.”
- Lastly, my CD 57 was measured. CD 57 is a marker in the blood, and levels of CD 57 are only suppressed in patients with Lyme Disease. My CD 57 was 29. You need to be above 120 to not have Lyme Disease. Clearly, I had a long way to go.
As an aside, my test results fit a classic profile for a Chronic Lyme Patient – poor detoxification ability, high concentration of toxins, low CD 57.
Before moving forward, I want to pause for a moment on the brain test, and the “locked in flight or fight” issue. This test was a harbinger of things to come. What I did not understand then but do now is the way in which my brain was deeply compromised by Chronic Lyme Disease. It’s a little of a chicken and an egg situation. The Lyme infection reached my brain and wreaked havoc. But also, the years and years of chronic illness wreaked their own kind of havoc. The result of the dual havoc was a case of anxiety too brutal, too intense, too debilitating to address here. I will get to that in due time, but felt it was appropriate to mention it at this point in the story, because I’m finding it easier to connect some dots in hindsight.
Back to the main narrative. Based on my battery of test results, my doctor prescribed a complex regimen to support and heal my gut, while detoxing my metals and other toxins that were lying around.
At this point, the goal wasn’t even to kill any Lyme. The goal was simply to help me feel better and stronger so I could resume my Lyme battle with renewed vigor and resilience whenever the time was right.
My husband and I left the doctor’s office with a stack of test results, a pile of new supplements and a feeling of exhaustion, exhilaration, and relief. Exhausted from the long day and intake of copious new information. Exhilarated at the prospect of new opportunities for healing. Relief that so much of what I had been feeling was confirmed by hard data – gut not working right, brain like cotton candy, etc. Somehow, the mere fact of validation is healing in its own way.
3. Detoxification Support
Detoxification was at the heart of my new regime. Since I was such a poor detoxifier, I had to give my body detox assistance every day.
I spent most of 2015 engaged in the following detoxification activities. I placed a D by the things I did daily, a W by the things I did a few times per week, and a P by the things I did periodically. Everything on this list seemed to help in some way.
- Epsom salt bath with rosemary essential oil – D
- Castor oil packs – D
- Paleo diet – D
- Drank lots of water – D
- Far infrared sauna – W
- Coffee enema – W (just for a few weeks. It was fantastic, by the way)
- Lymphatic drainage massage – P
- Craniosacral massage – P
In addition to the detox remedies, I was actively working to heal my gut through supplements and diet therapy.
As the year went on, I slowly started to feel better. Not anywhere near cured. “Less crappy” is the best way to describe it. It wasn’t much, but it was better than “more crappy”, so I took what I could get.
By Fall of 2015, my doctor thought I was ready to take another crack at killing Lyme. Both oral and herbal antibiotics were out, so we needed a new approach, ideally, one that would hurt the Lyme more than it hurt me. (what a concept).
4. Hyperbaric Oxygen Therapy (HBOT).
The premise of HBOT is you spend time in a hyperbaric chamber being flooded with oxygen at high pressure, which forces the oxygen deep into the tissues. HBOT is used to treat Lyme Disease because the bacteria that causes Lyme is anaerobic, meaning it cannot survive in oxygen. So, Lyme Disease + lots of oxygen = dead Lyme spirochetes. Or so we hoped.
This was a logical next step for me because I was never, ever going to take antibiotics again, and there were no pills involved in HBOT.
However, there is of course, no free lunch in life, and HBOT came at quite a cost in terms of time and finances. The standard recommendation is 5 sessions per week for 8 weeks. The sessions last just under two hours, cost $100 each, and in my case, the chamber was an hour round trip from my house.
I’ll let you do the math on the time and cost involved, as I’m still trying to forget.
In short, this was a significant commitment.
However, it was the only option at the time, so it wasn’t a difficult decision.
Here is the chamber in which I spent nearly 80 hours. I was prepared for what it looked like.
However, I was not prepared for this:
That’s not me in the photo. I never had one taken of myself. But at any rate, when you do HBOT, you have to wear an airtight hood into which oxygen is pumped. This set up ensures you are only breathing oxygen and not room air. Unfortunately, I never got the memo about the hood until right before I went into the chamber for the first time. Imagine my surprise, fear, and general freak out.
It was a challenge to fight the claustrophobia for the first two sessions. Meditation saved my bacon on that front. Beyond the claustrophobia, there were other issues to figure out, namely, how to get comfortable, and how to pass the time. Getting comfortable took some doing – laying down was a challenge with the hood. Sitting up was a challenge because the chamber is round, so it’s hard to lean against a round side without sliding down. And sitting straight up in the middle wasn’t really an option because of the low ceiling. I solved all problems with a few strategically placed pillows, and was a pro after a few sessions.
Passing the time ended up being easier than I thought. Being in the chamber amounted to forced down time, and I used it to meditate and read, and it went surprisingly fast. In the very first session it occurred to me that looking at my watch would make time stand still, so I never, ever looked at my watch, and I think that made a huge difference in my ability to simply be present with what was happening without spending energy on counting the moments until it was over.
Happily, HBOT was helpful to me. After my 40 sessions, I noticed a dramatic decrease in fatigue and brain fog, and an increase in energy. It was the leading edge of turning the corner.
However, I wasn’t doing HBOT in a vacuum. By coincidence, I started another treatment on the same day as HBOT, and I think the combination of the two treatments gave me exponentially better results than if I had done either treatment in isolation.
I started seeing a chiropractor purely out of happenstance. I was taking my daughter to a chiropractor for a few issues she was having. He seemed very knowledgable and talented, so I offhandedly mentioned that maybe he should take a look at me. He asked what my problems where, to which I said “how much time do you have?”.
In my mind, my most pressing chiropractic issue is that for about three years my left leg had been pulling up, along with my right ankle. It was uncomfortable day and night and I felt physically unbalanced most of the time. Over the years I had multiple professionals try to fix it through therapeutic massage, physical therapy, stretching and chiropractic, to no avail. I thought maybe this guy could help.
So, I mostly mentioned my leg, but casually mentioned I had Lyme disease and major digestive issues. What happened next was jaw dropping. The Chiropractor had me lay face down on the table so he could feel my spine. He immediately said I needed an x-ray. Take a look:
You don’t need to be a chiropractor to know that’s not right. That bad thing is supposed to be straight, and my chiropractor said it was about 25 degrees off. He said it was a pretty serious situation that would impinge the nerves that provide functionality for…….. that’s right, my digestive tract. It would also account for my leg pulling up.
I left the office that day dazed, confused and hopeful. I knew the crooked spine didn’t account for all my digestive issues, but getting it aligned certainly wasn’t going to hurt anything.
What ensued was months of three times a week visits to get realigned and rebalanced. The results were obvious and encouraging. Suddenly I could raise my hands over my head without pain, which had not been possible prior to chiropractic. More importantly, my abdominal area began to feel lighter and more spacious, and I started to feel a light pulsing sensation in my intestinal area – it felt as if the power was being restored.
Somewhere along the way my chiropractor discovered I had flat feet, and he prescribed orthotics, which I began wearing nearly full time. Between those and the adjustments, my leg stopped pulling up and my body felt balanced and level for the first time in years.
This was all going on at the exact same time as HBOT. My regimen went like this:
- HBOT was every day. I’d leave my house at 11:30 AM and return at 2:30 PM.
- On Monday, Wednesday and Friday, I went straight from HBOT to the chiropractor at 2:45.
I maintained this for eight weeks, and it was a grind (remember, I had far less energy than the average bear, and felt unwell most days). I got through it by seeing it as a part time job.
I finished HBOT on December 17, 2015 (best Christmas gift), and continue chiropractic care to this day.
There was something magical about the combination of HBOT and Chiropractic for me. HBOT helped restore my energy and mental function, while Chiropractic helped me regain physical stability, strength and balance. It also helped improve my digestion.
The result is I began to feel more like a “person” and less like a patient. I was being restored on all fronts, and importantly, I began to believe I might get better. Being chronically ill for many years slowly erodes your ability to trust in a better future. You hope and pray for it, and remain optimistic to yourself and others, but deep down, it’s nearly impossible to let go of the fear and cling to trust. At least for me.
That’s how 2015 ended for me. Hopeful for the future.
In fact, here’s something I wrote on my blog around that time:
When you have chronic illness, you get a little head shy about predicting improvement, because the possibility of disappointment is high. But I’m going to go out on a limb and say 2016 is going to be a good year for me. I have no idea what’s in store, or how much progress I’m going to make. But I have confidence in the team that’s helping me, I have confidence in myself, and I’m starting this year with every ounce of positive, hopeful energy I can muster.
Well, it turns out my hope was not in vain. 2016 turned out to be a good year for me. It had extreme challenges that brought me to my knees many times, but it also had healing on a level I never previously experienced.
6. Wait and See and Returning to my Original Doctor.
The whole time I was undergoing HBOT, I knew there was the possibility I would have to repeat the cycle again. I desperately did not want to, but was also willing to do whatever it took.
In January we met with my second Lyme doctor, and he checked my CD 57 to see if the HBOT made any progress toward killing Lyme. Unfortunately, my number was still very low at 23. Remember, it needs to be above 120 to be considered clear of Lyme. However, my doctor said it can take a long time after treatment for the CD 57 to recover. He described it like hitting your thumb with a hammer. The minute you remove the hammer, the assault is finished, but the thumb is injured, and the healing is just beginning. Likewise, he said killing the last Lyme bug is akin to pulling the hammer off the thumb. In other words, even if my Lyme was all dead, the healing was just beginning.
With that in mind, we decided to take a wait and see approach to see how my body responded to HBOT.
Since we were going into maintenance mode for a while, I decided to return to my original Lyme doctor, who was much closer to home. Additionally, I felt I went as far as I was going to with the second doctor. That’s how it is with Lyme. You work with somebody until they give you everything they have to offer, and then you work with somebody else who brings new perspective and ideas to the table.
Going back to my original Lyme doctor after about a year hiatus amounted to a fresh start for both of us. The science on Lyme is constantly emerging, and he was loaded with fresh insights and information. In turn, I was loaded with fresh insights and information on how my body worked, how it responded to different treatments, and how to better manage my digestive issues.
We met in late January 2016 to catch each other up. Since I had recently finished HBOT, and had lab work, we decided to continue the status quo and meet again in a few months.
In April we met again and did more blood work. My CD 57 was still disappointingly low at 22, and my white blood count was still suppressed. My doctor urged me to remain hopeful because I was still feeling the positive effects from HBOT – increased energy, less brain fog, less fatigue. He again stressed it can take a long time for the numbers to rebound, and sometimes the numbers don’t tell the whole story.
These meetings with my doctor are always more like strategy sessions than doctor visits. We assess the situation, and plot and scheme our next moves, with equal give and take between my doctor, my husband and myself. It’s a partnership, and we are always looking for an avenue that has not yet been explored.
In the April meeting we realized we had not checked my hormone levels. I wanted to do this for two reasons. First, I had crazy anxiety the felt like it was getting out of control. It was anxiety on a level I had never previously experienced in my lifetime, and had been escalating for months in spite of aggressive intervention on my part that included therapy, meditation, mindfulness, what I call emotional vomiting (i.e. staring down every demon I ever experienced from childhood to the present day). At this point, I had not tried pharmaceuticals, and was not inclined to, so I was wondering if perhaps a hormonal imbalance could be contributing to my anxiety.
I also wanted to check my hormone levels because my menstrual cycle stopped long ago (and I’m not in menopause). It could easily be attributed to my weight loss, but I wanted to check my hormones just in case.
So, my doctor ordered a hormone study which involved collecting my urine for 24 hours and sending it to a lab. Apparently, this is the best way to get an accurate read. He also ordered blood work to check my CD 57, heavy metals and white blood count.
Well, the test results were revealing. I had definite hormone imbalances, which I honestly saw as good news. I’m always happy when we find another layer of the onion to address. Disappointingly, my CD 57 remained low at 22, and my white blood count was still suppressed. However, my levels of heavy metals were within normal range, so that was a good thing.
My doctor started me on bio-identical hormone cream to address my hormonal imbalances. He also did something that felt at once radical, scary and freeing. By this stage of the game, I was swallowing a large amount of supplements daily in order to address the various deficiencies caused by being chronically ill. I always bring all the bottles to each appointment so we can review what to keep, what to modify, and what to get rid of.
This time, as I laid my various bottles on my doctor’s desk, he looked at all of them, and looked at me and said “you know what. If I felt I needed to take all these things every day just to function, I wouldn’t feel like a very healthy person.” Then he suggested a “drug holiday”. He advised paring down to the bare minimum – digestive enzymes, vitamins, and a probiotic.
At first I was reluctant. I was starting to feel a little better, and what if some combination of all the bottles was part of that? I didn’t want to do anything that would jeopardize my progress. On the other hand, I was tired of swallowing so many pills every day, and I was tired of the time and expense involved in the procurement and management of said pills.
So, I was scared, but I did it anyway. It turned out to be a wise move that benefited me on so many levels:
- Taking fewer pills made me feel less like a patient and more like a person.
- Every day life and travel were so much easier without having to deal with all the pills.
- My gut appreciated not having to break down so many capsules each day.
At this point, I don’t know if there are any negative consequences to cutting back my supplements, but time will tell.
7. Time to Focus on the Weight and the Anxiety.
Unwanted weight loss has been my constant companion since the day my digestion shut down in August 2009. Because of my slow motility and attendant gut issues (bad bacteria, mold, damage from antibiotics, etc.), it was simply impossible for me to eat enough calories to maintain my weight.
When you have slow motility, you feel Thanksgiving-day-full after eating small amounts of food. Also, you basically feel crummy every time you eat – nausea, heaviness and a general sense of having a large bowling ball in your abdomen.
These physical issues were compounded my my ever increasing anxiety. I learned that anxiety shuts down your digestion. Why? Because when you are anxious, your body thinks you are running from a bear. And when running from a bear, your body smartly shuts down everything that is not vital to running from a bear (such as digestion), so all energy can be focused on running from the bear. This is the fight or flight response, and explains why people can suddenly lift a car off a toddler pinned underneath, etc.
Since I was anxious nearly all the time, my body was in a near constant state of thinking it was running from a bear, and of course, that meant my already barely functioning digestive tract was further stressed. Very bad combination. Then of course I would get anxious about being anxious because I knew it was hurting my digestion, which in turn was not helping me gain weight. It was a deadly vicious cycle.
I was working hard on dealing with my anxiety. I was working hard on gaining weight. I was not succeeding on either front.
At this point, we decided to forget about Lyme for a while, and make Anxiety and Weight Loss Public Enemy Number 1.
I had worked with various nutritionist throughout the years, but never found THE ONE to help me succeed in gaining weight. At this point, I decided to try again, and through a friend found the wonderful Ashely Oswald.
Ashely was knowledgable, kind and compassionate. She took me by that hand and said we were going to figure this out. At this point, I was literally skin and bones, weighing in at 81 pounds at 5’6″. Desperate doesn’t even begin to describe how I felt.
Ashley suggested several diet modifications that she hoped would help heal my gut enough to put on some weight. Unfortunately, nothing helped. As a last resort, Ashley suggested something called an Elemental Diet. An element diet is a liquid diet consisting of protein shakes that are broken down to their most basic elements. In other words, the protein powder is basically pre-digested, so the body doesn’t have to do any work to assimilate it. It simply has to absorb.
I decided to give it a go, and holy cow, it worked. For the first time in seven years, I didn’t feel horrible after eating, and I started to ever so slowly gain weight. Each shake contained a whopping 500 calories, which is dramatically more food than I could eat in a sitting. I found that if I sipped the shakes very slowly (30-45 minutes per), I could get them down without negative consequence.
Through trial and error, I found a routine that worked for me: a shake for breakfast, a shake for lunch, a half shake for an afternoon snack, real food at dinner, and a half shake for dessert.
In this manner, I would receive 1,500 calories from the shakes, plus whatever I ate at dinner. I decided to eat food for dinner each night for several reasons. First, I just thought it would be too emotionally difficult to not put any actual food in my mouth on a daily basis. Second, I wanted to keep my digestive tract acquainted with the task of dealing with real food. Third, I love to cook, and I make dinner for my family each night, so I couldn’t imagine all those nights of cooking without any eating.
At first, It was difficult to go without food during the day, especially when others were eating around me. However, the longer I stayed on the liquid diet, the better my digestive tract felt, and the less I cared about the food I wasn’t putting in my mouth. After SO MANY years of near constant digestive discomfort, I finally had relief. I didn’t feel great every day, but I felt vastly improved, and it was a gift beyond measure.
Also, I was feeling so much better after eating dinner than I did prior to starting the liquid diet. My theory is my intestines were more up to the task of handling dinner after having all day to rest on the liquid diet, which asked very little of them.
I started the liquid diet in late May 2016, and as of January 2017, I had gained a whopping 18 pounds. Wow. I had been desperately trying to gain weight for seven years, and this was my first taste of success (pun intended).
On a parallel path to gaining weight, my body started responding in important ways: my energy continued to improve, I was able to exercise and put on muscle, I started to menstruate again, and my hair, which had begun to fall out and lose luster reversed course on those fronts. In short, my body was coming back on line. As I write, I still need to gain about 20 pounds, but I am going to stay the course, and look forward to the continued evolution of my body.
At this point, what remains unknown is why my GI tract feels better. Has the liquid diet allowed healing to occur? Or, is it that a liquid diet is all my fragile intestines can handle at this point? Another way to say that is perhaps I’ve been trying to eat above my pay grade all these years (i.e. real food vs. liquid).
I’m not sure how to find the answers to these questions, and for now, I’m not sure they are important. My plan is to say the current course until I weigh at least 110, and then we can discuss further options.
The product I use is called Absorb Plus. It looks like this:
You can learn more about it here.
And buy it here.
I should note, Absorb Plus comes in a few flavors, but my nutritionist strongly recommends the unsweetened vanilla because it is low in sugar (unlike the other flavors), and sugar tends to be unhelpful to a distressed gut. However, to keep it from being too boring, I do mix in a little of the chocolate for my snack and after dinner shakes. For my snack I do about ¼ chocolate to ¾ vanilla, and for after dinner I do about half chocolate and half vanilla (it is my “dessert” after all!).
So, the weight gain plan is firmly in place, and is working.
If only the anxiety management plan could be this simple. I don’t really know where to begin on the anxiety, because it’s a long, complicated story, but I will do my best to tell it in short hand.
The story goes like this. I’ve been a low level worrier all my life. I’ve come to believe I was born that way. But prior to the last few years, I would not have said my worries rose to the level of anxiety. It was just garden variety worry.
Then about mid-2014, worry began to morph into low level anxiety which eventually blossomed into full on, debilitating, can’t-take-this-for-another-second anxiety. This was a new phenomenon for me, and it was very scary.
Unfortunately, I wasted a great deal of time feeling tremendous shame about my anxiety and I blamed myself for it. I fell into the typical traps of thinking it was a sign of weakness and that I should just be able to “power through.” I and I just couldn’t shake the feeling that it was all my fault. I mean, it was happening in my own head, so shouldn’t I be strong enough to just shut it down?
Since I saw my anxiety as a personal failing, the only people I shared it with were my husband, and my therapist. Through much therapy and soul searching, I was finally able to understand a number of things:
- I had a lot of very good reasons to be anxious.
- Anxiety is not a character flaw.
- Anxiety is nothing to be embarrassed about.
- In fact, now I am the opposite of embarrassed about the fact I suffer from anxiety. And I’m talking about it in order to do my part to help remove the stigma from mental health issues.
Seems so simple to say, but allowing myself to believe the above was nothing but. This transformation in my thinking was the first step toward actually dealing with my anxiety. The way I explain it is that I found myself in a hole, and instead of figuring out how to dig out I was putting all my energy into blaming myself for being there in the first place. Not a very effective strategy.
Whenever possible, my preference is to deal with health issues naturally. My goal is to try to find the root cause of my problem (whether mental or physical) vs. simply treating the symptoms with medication. I know many people feel very differently about this, and I completely respect that. I’m just sharing what works best for me.
In that light, I fought my anxiety hard for 18 months without the use of pharmaceuticals. I did everything imaginable – exercise, meditation, talk therapy, mindfulness, essential oils, adequate sleep, prayer. All of these are proven to positively effect anxiety, but I wasn’t having any success. If anything, my anxiety got worse. I started to tell my therapist (who is excellent, by the way) that I felt I had treatment-resistent anxiety (a term I made up).
Finally, I just couldn’t take it any more. My anxiety diminished my life to the point I was afraid to leave the house, my world had become very, very small, and I was in agony nearly every day. Time for pharmaceuticals. Again, I know this would have been the first stop for many people, and I don’t have any judgment about that. It’s just not how I roll.
I am extremely sensitive to medication, which is part of why I was resistant to treating my anxiety with it, but my back was against the wall, and I saw no other choice. After a little trial and error, we found the right micro doses (literally 1/8 to 1/4 of what a normal adult would take), of two different medications.
The medication is not a cure all. It hasn’t turned my anxiety to vapor. Rather, it has knocked it down to a level that is manageable most days. I have had two different therapists tell me you are never really cured of anxiety. Rather, you learn more effective strategies for how to deal with it.
With the help of medication and daily coping strategies, my anxiety is dramatically reduced. However, it’s still a problem, and something I wrestle with every day. But I’m wrestling with it at a lower volume, and it’s not running my life.
When at my worst, my anxiety level was a 10 out of 10. I’d say it’s a 5 now. That’s still a whole lot of anxiety, but a whole lot better than 10. This is something I need to consistently work on, and I will never give up on finding the peace that is so elusive to me at times.
You are probably wondering what the heck I’m so anxious about. That’s complex, and a story for another time and place. However, I will share this. Over time I have come to believe my anxiety results from a perfect storm of the way I’m wired, and things that happened to me in life – both in childhood and as an adult. My Lyme doctor would also add that the Lyme infection is in my brain, and who knows what kind of havoc it wreaked. Remember, I never had anxiety at this level before I had Lyme disease.
8. Bad News Just as I Thought Things Were Coming Together.
By January 2017 I was feeling pretty good about my progress. I was gaining weight and muscle. My brain fog and energy were dramatically improved, I had far fewer GI issues due to my liquid diet, and my anxiety was lessening.
Then I saw my doctor for a routine check up and blood work. That’s when I began to feel less good about my progress. My Lyme marker, CD 57 (remember that from above) had dropped to an all time low of 15. It was 18 in the fall, and we thought that was a debacle, and now it was even lower. It needs to be a minimum of 60 to be considered clear of Lyme, and I was definitely going in the wrong direction. Also, my white blood count was still suppressed. Not the news we were looking for.
My doctor said I was one of a handful of his patients who are “persisters”, meaning, the Lyme just wants to persist in our bodies in spite of all effort to show it the door. Said another way, the treatment protocols that are working for other patients are not working for us. Ugh.
It was crushing to feel like I was making such progress while the lab report said the exact opposite. This has happened before, and I always tell myself I am not my lab numbers. But still.
My lyme doctor said it’s time to take action. He gave me the option of another round of carefully administered traditional antibiotics or a course of herbal antibiotics. To the surprise of no one, I opted for the herbal route. My doctor prescribed a complete herbal regimen that consists of both liquids that need to be diluted in water, prescriptions and supplements. After being relatively pill-free for the better part of a year, it’s back to a lot of pills and a lot of hassle.
I am on the eve of starting my new regimen, and I find myself both apprehensive and hopeful. There’s a good chance it’s going to make me feel sick, and I know it’s going to be a drag to deal with it, but I am also so darn determined to regain my health. Fully and completely. So, I’m going for it.
So, that was a long story. And trust me, this is the abridged version. I hope that I was able to provide hope, inspiration, and helpful information. And I hope I was able to help you understand that a Lyme battle does not always happen in a straight line. It’s so often one step up, two back, one to the side, and then one forward again. But the thing to hang on to, is the sum total of everything I’ve done is forward progress.
And yes, my recent lab numbers seem like a set back, but I feel exponentially better than I did a year ago, and no lab test can take that away from me. I have every reason to believe I will continue to move forward. I have every reason to believe I will continue to regain my physical and mental health. And I have every reason to believe I will regain the inner spirit and vitality I had before I got sick.