Lymiversary

Well, it's officially been one year now since I began experiencing symptoms of what-would-eventually turn out to be Lyme disease. July 5, 2017, right after Independence day, which is a bit ironic since getting Lyme was all about losing my Independence, at least for a little while.

So how am I doing?

Well, today being my Lymiversary and all, I was hoping to spend much of the day in relative comfort and appreciate the fact that I was much better than how I was a year ago.

This didn't quite happen.

I woke up this morning July, 5th, with the worst stomach ache I think I have ever had in my life. There was burning and sharp pains. At times, it felt like I was getting stabbed right through the gut with a zillion razorblades.

At first, I thought I may have had food poisoning, but I didn't have a fever and I wasn't vomiting either.

Then, I thought I had appendicitis, but appendix pain is supposed to be more on the side. Mine was right in the center.

It wasn't until a little later that I realized the pain could have been a herx (i.e. die-off) reaction, or at least some kind of adverse reaction, to apple cider vinegar. See, over the holiday, I unknowingly ate chicken that had been marinated in an Italian dressing that had apple cider vinegar as its second ingredient. Apple cider vinegar kills off yeast, parasites and God-knows-what-else so it's very possible the pain was from the release of endotoxins during die-off.

The stomach pain was so intense that I was laid up on the couch all day and this triggered very vivid flashbacks from one year ago. Even the sight of the tray table I had in front of me with half-sipped drinks, straws in each glass, seemed all-too-familiar. The cream of rice I ate...the daytime TV channels I watched...the overall malaise that I felt and inability to go outside of the house--it was like I was experiencing a downward spiral all over again, exactly one year later. I kept saying to myself, "This seriously can't be happening, exactly one year later. What are the odds?"

As I write this, my stomach is a little better so I'm hoping everything settles down eventually and that this is all simply a herx issue and nothing else major. But, man, talk about a sick little trick to be played on somebody who's experiencing their one-year Lymiversary. What can you do, though, but roll with it and don't start panicking!

Stomach issues aside, how am I doing one year after getting Lyme disease?

Not too bad, I suppose. In fact, I recently saw my (Lyme-literate) doctor, just about a week ago, and he gave me a stellar report. According to the orthomolecular machine he uses, my body now requires about 70 percent less vitamins and herbs than it did at the end of January. Even better, many of the vitamins and herbs I took specifically for liver function are no longer needed. One of these herbs is milk thistle, which means my liver is officially "cleaned out".

This is all good news. But I'm still far from being back to normal.

The biggest issue is still physical stamina. For the past month or so, I've been going up to the local high school's track to do workouts, though when I say "workout", I mean walk around the track, no more than twice. In fact, I've found that I literally can't walk more than twice around the track, which is a quarter of a mile in length so this means I can't walk more than a half a mile at a time. Even walking around the track a full two times is too much for me so I usually do about one and a half laps. There is a football field in the middle so I do one lap, then a half a lap, cut across the field and then I'm done, that's all she wrote.

I've even tried jogging at the track but it was brief and I mean very brief, probably for no longer than five seconds. Judging by how I felt after, I realized jogging any longer than five seconds or just jogging in general would be a total disaster. It made me feel vertigo and I had trouble walking in a balanced manner. Three hours later, I also felt gross, like really gross. Terror set in. I thought I may pass out but the feeling eventually passed, thankfully.

So running definitely isn't in the cards right now, which I'm ok with. Walking for a third of a mile or so without dying afterwards is pretty good considering where I was just about a year ago. Really, I'm one of the lucky ones and I need to be grateful, even though I still mourn the loss of my former self.

Along with the improvements in walking, another milestone has been my ability to drive longer distances. Just a few days ago, I drove on the highway for the first time in more than a year. This is a big deal because I've felt so cooped up for so long. I've been in a weird bubble of a twilight zone, so isolated and so alienated. Driving on the highway made me feel free again.

Since I'm able to walk and drive further, I've been generally more out and about in the world. Just the other night, I went out to see the local fireworks display and let me tell you: I was very apprehensive about doing this, mainly because I knew a significant deal of walking would be involved. The usual tradition is for me to meet up with my friends at one of their houses, which is, I believe, maybe a half a mile or so from where the fireworks go off, drink a few beers, then walk to the fireworks. I knew that, this year, however, I would not be able to do this walk. I'd probably be able to make it to the fireworks ok, but then I'd be dead to the world and I'd be unable to get back.

So I hung out at my friend's house as usual but then I had to drive as close to the fireworks as I could possibly get. I didn't think I'd be able to park very close, but I still thought I'd be clos(er) than my friend's house. As it turned out, the closest I could park was the nearby train station. I still wasn't sure if this was close enough for me, but I decided to take the risk and go for the walk anyway. Would I regret it? I hoped not.

Let me tell you: that walk was a very lonely one, because I was alone and I passed couples and friends and families and, well, I felt so alone. It would have been easy to feel sorry for myself but it was also kind of beautiful, and I don't know why. Maybe because it was a perspective from which I had never experienced the traditional fireworks night before. In fact, this has been a recurring theme throughout this past year: seeing life from a different perspective; seeing reality from a different perspective.

See, before Lyme, I was set in my ways, habitual with my routines and went through life in a kind of cruise control. It's amazing to experience how much more there is to reality, but you can only start experiencing it when something life-changing like Lyme slaps you out of your routines. Experiencing the fireworks from a different perspective was just one example of this*, but there have been several of these moments where I find myself in the same situations or the same physical space that I've always been in but I'm experiencing the present reality from a completely different perspective, or, to put it another way, it's like I'm in the same reality but tuning into a different frequency within that reality. What you end up realizing is that life can become so much more interesting and you don't even need to go anywhere different; all you need to do is tune into different frequencies. 

So, yes, my walk alone made me experience the traditional fireworks night from a different perspective and this was why the walk was quite beautiful. However, what also made the walk rather beautiful was that the solitude made me enter a kind of meditative state and it enabled me to take some time to reflect back upon the year and realize how much I had been through and how much I had overcome and there I was, struggling to get to the fireworks display to celebrate my new Independence. Every other year, I had been buzzed (ok, usually drunk), surrounded by friends, numbed to my surroundings but this year I entered that meditative state and truly got to appreciate what freedom actually is because now freedom means more to me than it ever did before I was sick.

I still have a ways to go, that much is for sure. But I should really be grateful for the freedom I do have right now. A broken life is better than no life at all. In fact, sometimes the broken life is preferable to the perfect life because it's from the brokenness that we grow and become a stronger soul. I actually recently wrote a poem about this very topic, so I shall close with this poem:


SQUEEZE OUT EVERY LAST DROP

The way I see it

You can have an imperfect life

A broken life

One that is a fucking nightmare at times

Or you can have nothing

I choose the broken life

That's better than choosing the nothing

And even if there's an afterlife

And I believe there is one

There's still only one Matt Burns

Ever

So I figure

It's best to squeeze out every last drop of him

And see what comes of it

*I was recently at a park that I formerly used to run in but, this time, I was forced to walk a minimal distance and then sit down on a bench. Sitting on the bench, I looked across the park and saw the tree line that was moving and swaying a bit from the wind. The wind carried fragments of sound to my ears, like a little girl giggling in the distance, as well as the echoed sound of a basketball bouncing in a nearby court. I don't think I had ever been so tuned into my present reality than I was at that very moment. Lyme forced me to slow down, sit my ass on a bench and tune in.

My Vitamin Regimen

In previous posts, I've mentioned various vitamins and minerals I've been taking for my Lyme recovery, but I have yet to share my full regimen with you...

UNTIL NOW.

Yes, I feel it's time to list each of the vitamins, minerals and herbs I'm taking. If you are a Lymey like myself, I would highly recommend you look into taking these vitamins, though I would suggest you perhaps refer to a doctor first or at least try them out at a very low dose. Most of these vitamins are very benign with very few side effects, if any at all. None of them are toxic either, meaning you won't get poisoned from them. However, it is possible to be allergic to some of them, especially the herbs. For example, I recently had a cup of ginger tea (made with real ginger, the kind you can feel spicing up your veins as it runs through your bloodstream) and it didn't go well. Nothing too bad happened but I woke up the next morning feeling like I had the flu. On one hand, it could have been a strong herxheimer (aka 'herx' or a-aka 'die-off') reaction but, in general, I felt very off afterwards. I later found out from my doctor that I was allergic to it. So, again, proceed with caution and always start with a low dose!

Without further adieu, here is my current vitamin regimen. Please note that much of the information I provide about these vitamins has been obtained from a book I highly recommend called: Unlocking Lyme: Myths, Truths, and Practical Solutions for Chronic Lyme Disease by Dr. William Rawls. 

I shall begin with the most obvious vitamin:

Vitamin C

It's obviously good for your immune system, as it is an anti-viral and anti-bacterial supplement. It's also an antioxidant so it's great for detoxing the liver and the body in general.

My doctor currently has me on 12 Ascorbyl Palmitate Vitamin C (450 milligrams each) a day. I only take nine at the moment because I was concerned that 12 was a tad too much, but I'm supposed to be on 12. This is because my liver is struggling and I'm detoxing like a mama-jama.

Vitamin A

Great for your immune system, as it fights viruses and bacteria. Also, great for eye health! And, oh, great for your skin if you want to be all smooth and moist.

Vitamin A can supposedly be toxic if taken at high levels but I was recently taking 3 capsules a day (10,000iu each) and I was fine. I mainly took the Vitamin A for my eye issues. Now I take only 2 a day but I may go back to 3 here and there if my eyes keep giving me problems.

Vitamin D

Most people know that it's good for bones and teeth (because it helps you absorb more calcium) but a lot of people don't know that it's great for immune function as well. Forget anti-flu medications like Tamiflu. Pop a couple Vitamin D's, in addition to C and also A, not to mention zinc, and you'll be good to go.

I currently take three Vitamin D's a day (5000iu). That's a lot of D. I should have sunshine beaming out of my eyes. But I don't. Not usually.

Coenzyme Q10 (CoQ10)

When you're sick, especially with something like Lyme, many of your bodily cells get damaged. Potent pharmaceutical drugs (in my case, Levaquin) can damage cells as well. CoQ10 helps restore these bodily cells because it is responsible for producing energy within mitochondria. The vitamin is especially good for restoring heart health, as the heart is an organ that requires A LOT of cell energy.

CoQ10 is also a great antioxidant that protects your body from harmful toxins and molecules.

I currently take 5 CoQ10 a day (during the worst of times, I was taking 6), 200mg each.

Vitamin K-2

The main function of Vitamin k-2 is to help distribute calcium throughout your body to areas that need it most, like bones and teeth. It also prevents calcification of arteries, thus benefitting your heart and your brain.

I take eight capsules of Vitamin K-2 a day (100mg each)! All the Vitamin D I take helps me absorb calcium and the K-2 helps distribute it!

Magnesium L-Threonate

Great for the brain. It helps strengthen synapses, thus improving memory and overall brain function. It also helps you sleep better, which leads to less anxiety and less depression.

I'm currently supposed to be taking six of these a day but I'm currently only able to tolerate 3 or maybe 4. As you may know, too much magnesium gets your GI tract moving and grooving if you know what I mean, jellybean.

Multi-Vitamin

My multi contains a variety of vitamins and minerals, including zinc, selenium, calcium, Vitamin E, Potassium, B-Vitamins, the list goes on and on...

Overall, all these vitamins are more antioxidants and great immune boosters.

I take nine capsules a day of a multi called Nutrient 950 (without copper or iron) from the brand Pure Encapsulations.

Molybdenum

I've spoken of Molybdenum in previous blogs. In fact, this was the very first supplement I took when I had Lyme because taking Moly was actually the only way my body would tolerate the Doxycycline.

Technically, Molybdenum is a mineral that helps facilitate the breakdown of certain amino acids and blah blah blah. I don't know what that means and I doubt you do either unless you're a doctor or chemistry whiz. Let's make things simple and say Molybdenum is a mineral that helps your liver with the detoxification process, hence why I needed it when I was pounding Doxy and its Toxy (meaning toxicity) by the boatloads. Toxy Doxy. Tsk Tsk Tsk.

Alpha Lipoic Acid

Another antioxidant, great for the liver. It enhances the antioxidant effects of Vitamin C, Vitamin E and the yet-to-be-mentioned glutathione (mentioned below). Overall, it helps remove toxins from the body.

I currently take three Lipoic Acid (600mg) daily. That's a high dose!

Tocotrienols

These are antioxidants, great for cleaning the liver, but they also help reduce cholesterol, inhibit certain cancers and manage diabetes.

I currently take four of these a day (40mg).

Milk Thistle

I only started taking this recently and I'm eager to see how it benefits my liver issues. This herb offers protection for liver cells. It also induces regeneration of liver cells, which is great if you have liver damage.

Furthermore, Milk Thistle helps blood move from the liver to various parts of the body that need it. Part of the reason why I have so much trouble with physical activity is because not enough blood is being moved around my body. Also, my recent eye issues can be attributed to my liver and its inability to distribute sufficient blood to my eyes, thus resulting in easy eye strain and dry eye. That's right: what a lot of people don't realize is that eye issues may be indicative of an unhealthy liver!

I currently take four capsules of milk thistle a day (250mg each). That's a high dose and only necessary for people who have high liver enzyme levels. I currently have one high enzyme, the SGPT enzyme if you want to be technical.

UPDATE: I've slowed things down with the milk thistle, as it was causing some strong herxing (i.e. strong die-off reactions).

Glutathione

This is an antioxidant that reduces oxidative stress, which means it reduces free radicals floating around the body, which further means it cleans the toxins in your body. It also reduces cell damage from alcohol and non-alcohol-related liver disease.

As I write this, I have not started taking glutathione but I'm supposed to be taking two capsules of Acetyl Glutathione a day (100mg). I was just recently "prescribed" this supplement and I'm eager to see how it benefits me.

UPDATE: I've been taking half the dose prescribed but recently even cut that in half because of some potentially strong herxing.

Lutein

These supplements are great for the eyes and are especially helpful in blocking harmful UV blue light that damages parts of the retina, therefore preventing macular degeneration. If you're like me and you use computers and other digital devices, it may be good to take some lutein.

I currently take four capsules a day (20mg).

Astaxanthin

Another supplement great for eye health. It blocks UV light from damaging the retinas. Its anti-inflammatory properties are also great for joint health. It makes the skin smooth, it's good for brain health, immune health...you name it.

I currently take four capsules a day (4mg).

Artemisia (i.e. Wormwood)

This is a potent herb that fights malaria and other bodily parasites. It also fights cancer.

Wormwood can be a hallucinogenic if smoked or made into a tea. I am not using it for this purpose.

My use of Artemisia is still in the experimental stages. I'm supposed to be taking it because I supposedly have some parasite issues going on. Whether this parasite is a tick-borne parasite (like Babesia) has not been determined and I doubt it will ever be determined. It's not exactly rare to get Babesia as a coinfection with Lyme, but ticks can give you all sorts of other parasites. Either way, according to my doctor, I need Artemisia.

A few weeks ago (as I write this), I took a capsule of Artemisia and experienced spasming in my bladder/intestinal area. So I stopped. I took it a second time, experienced the same thing but on a smaller scale. I stopped again but it was possibly an initial herx/die-off reaction. For now, I've been getting my body used to my other supplements, especially Milk Thistle and Glutathione, which are two of the newest supplements I've been taking. Once I get comfortable with everything else, I will again try to integrate Artemisia into my regimen. If I still experience problems, I will know it's the Artemisia that is a problem and will have to stop.

I'm supposed to be taking six a day.

Moral of the Story

I'm sure most of you reading the list above are surprised by how many friggin' vitamins I take. You're right: it's a lot! Also, if you're wondering, it's expensive as hell! Unfortunately, taking all these vitamins is necessary for Lyme recovery, which is another reason why I would NOT wish Lyme upon my worst enemy.

If there is anything to take away from all this, it would be TAKE CARE OF YOURSELF. The better you take care of yourself, the better you eat, the better you drink, the better you don't smoke etc., the better the chances that you will never have to fight a terrible disease like Lyme and have to take a ridiculous amount of vitamins like I do. Lyme disease preys on a weak immune system and the best way to keep that immune system strong is to take care of yourself. If I could go back in time, there is just one thing I would say to me in the past: "TAKE CARE OF YOURSELF! If you don't, you'll be sorry."