treatment part 7: herbal medicine

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My dear friends, today we’re talking about herbal medicine. It’s a fun topic for me, as I have noticed such a big shift in my own thinking as to the importance of herbs in conjunction with my Lyme treatment. Originally, I expected that we would rely almost solely on what I could pick up from the pharmacy. What we actually do is a combination of Western medicine (conventional medicine) and Herbalism. My Lyme doctor practices “integrative medicine”, which means that she aims to take the best of what all medicine has to offer and present me with that option. I really appreciate this about Dr. G – that she is looking at all of the possibilities in order to find the right combination for me.

Now, for those of us totally new to an herbal approach, let’s talk about it. The University of Maryland Medical Center says this:

“Herbal medicine, also called botanical medicine or phytomedicine, refers to using a plant’s seeds, berries, roots, leaves, bark, or flowers for medicinal purposes. Herbalism has a long tradition of use outside conventional medicine. It is becoming more mainstream as improvements in analysis and quality control, along with advances in clinical research, show the value of herbal medicine in treating and preventing disease.

Recently, the World Health Organization estimated that 80% of people worldwide rely on herbal medicines for some part of their primary health care. In Germany, about 600 to 700 plant based medicines are available and are prescribed by some 70% of German physicians. In the past 20 years in the United States, public dissatisfaction with the cost of prescription medications, combined with an interest in returning to natural or organic remedies, has led to an increase in herbal medicine use.”

My friends, before I share with you a little bit about my experience with herbal medications, I need you to raise your right hand and repeat aloud, “I, ______ (your name), do solemnly swear not to go off on my own and treat myself with super-duper powerful herbal medications.” Thanks, friends. That makes me feel a lot better. Because, honestly, herbal medications are potent, and it’s never a good idea to self-medicate.

I’ve tried many herbal medications over the years. Most of the time, it has been in conjunction with pharmaceutical antibiotics or antivirals, but I have also done ½ a year using only herbal medication.

Here are a few examples of one’s I’ve used:

Curcumin – is an anti-inflammatory, supports cognitive and cardiac function, etc

Berberine – kills bad bacteria, is an anti-inflammatory, regulates blood sugar, etc

Ginger – works as a pain reducer, decreases digestive issues, etc

Garlic – detoxifies heavy metals, combats sickness, is rich in vitamins, etc

Cordyceps Sinensis – increases energy, activates the immune system, acts as a tonic for the whole body, etc

Grapefruit Seed Extract – breaks apart Lyme cysts, is an antimicrobial and an antioxidant, etc

Sanguinolenta Root Extract – is an anti-malarial and an antibacterial, etc

Stevia Extract – helps to control blood sugar, blood pressure and cholesterol, etc

Baical Skullcap – is immunoprotective, is an antibacterial and antiviral, and helps circulatory issues

Houttuynia Extract – is an antiviral and an antibacterial

Licorice Root – useful for digestive issues, adrenal fatigue support, and pain relief, etc

Serrapeptase – reduces pain, is an anti-inflammatory, promotes normal blood clotting, etc

Andrographis – is an antiviral and an antibacterial, helps repair the gut, works against hypoglycemia, etc

Cat’s Claw – boosts immune function, repairs DNA, is an anti-cancer agent, treats arthritis, etc

Resveratrol Ultra – reduces inflammation and cholesterol, is an anti-cancer agent, etc

My experience:

I have enjoyed using herbal medications in my treatment. Dr. G has added herbs or taken them away in different seasons, according to where she feels like my body needs support. Under her care, I have also tried an all-herbal protocol laid out by Dr.Stephen Buhner, one of the foremost doctors in the Lyme herbalist community. I was using his protocol specifically for people who have Lyme, Bartonella, and Mycoplasma infections.

I have and still do herx (experience Lyme bacteria die-off) while taking herbal medications, including the 6 months where I was ONLY taking herbal medications. To me, this says that these herbs are valid and effective. I’ve rarely had side-effects with these meds, definitely fewer than western / conventional meds. The only non-herx symptoms I can knowingly attribute to herbs have been nausea and digestive issues.

Should you be interested in using herbal medications as part of your treatment, I suggest talking with your doctor to see what their views are AND if they have any experience with using it successfully in the treatment of others.

Researching for yourself is also very helpful; as we have painstakingly learned in the patient community, “You are your best advocate.”  Leafing through one of Buhner’s books could be a great starting place. His book Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and It’s Co-infections is his seminal work. He went on to write other books specific to groupings of co-infections: Babesia, Erlychia and Anaplasma and  Bartonella and Mycoplasma. What I appreciate about his books is that he takes the time to explain benefits, side-effects, dosages (remember your solemn vow above), and the most reputable places to buy herbs… as well as the longest list of medical journal references I’ve ever seen.

Final thoughts:

  • Herbs, which are basically “super-food” plants, have been used medicinally throughout all of human history.  To me, it’s reasonable that they would still be a viable form of treatment – either in conjunction with western medication or on their own.
  • Herbal medications are potent and should be used under the care of a doctor. Because it is easy to order them online, it’s natural to think that it’s not really a big deal. But actually, this stuff is a big deal, and you want a doctor who knows what they’re doing to find the right treatment plan and to be monitoring you.
  • An additional reason it is so important to be under the care of a doctor is that they will also tell you where to get your herbal meds and what brands to buy. Like food, not all herbs are grown and processed equal. You want to go with the reputable companies who sell pure, high-quality products.
  • My friends, I hope you feel the freedom to think about new things to add into your treatment protocol that seem doable and exciting. It’s amazing to me how many different things are available to help our bodies fight and recover. What a hopeful thought!

treatment part 6: brain exercises

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My dear friends,

Today I want to talk about a fabulous form of “treatment”: brain exercises. Yes, it is actually a real thing that my doctor asked me to do as part of my treatment plan. It may sound insignificant compared to the other options for getting well, but it’s actually very helpful and 100% good for you. Remember, I am a big fan of avenues that help you get better that have no downside.

Did you know that your brain can be retrained to work better?  For those of us who suffer with memory loss, trouble focusing or making decisions, confusion, or even getting lost… we can literally help our brains heal. Our brains can create new connections by doing brain exercises.

My friends, I know that the idea of doing brain exercises may make you want to pull your hair out. There are many days that I feel that way – even though I am convinced it is helpful. When we feel so “fried”, it sounds like the last thing we want to do… but that is actually an indication that we need it!

So, let’s talk about options:

  1. BrainHQ – This is an app my doctor “prescribed”. It was created by a team of neurologists, in order to help their patients with the things I mentioned above, as well as things like auditory processing, sorting information, etc… I’ve used it, and was extremely impressed. As opposed to some other programs, it is truly challenging (in a good way). Throughout the months, I could see that my brain was making improvement. It has some free exercises that you can do daily, but you can pay for a subscription that gives you access to all of their 29 games. If you subscribe a month at a time, it is $14 per month. If you subscribe for a year, it is $8 per month.
  2. Peak – This is an app I found on my own, and I love it. It doesn’t feel as challenging as BrainHQ, but I do find it more fun; I look forward to playing it each day. It also has some free exercises that you can do daily, but a subscription will give you access to all 36 games. If you subscribe a month at a time, it is $5 per month. If you subscribe for a year, it is $3 per month.
  3. FitBrains – This is an app by Rosetta Stone. It is not as challenging as BrainHQ or Peak, but I did find it helpful. This is perhaps the most user-friendly / intuitive of the three. They have a free trial period only; after that, you would have to subscribe in order to keep playing. If you subscribe a month at a time, it is $8. If you subscribe for a year, it is $3.33 per month.

All of these options are good. I’d suggest you try all three before subscribing. That way, you can decide which is your favorite. When you do this, I’d “exercise” for 15-20 minutes a day. Stay consistent with it, and within a few weeks, you should be able to notice your cognitive function improving.

I have a funny confession. There was a point where I was turned off by the idea of subscribing to one of these. My thought was, “I’m paying so much for everything else… I don’t know how I feel about spending this.” Then, I had a reality check: “I’m paying so much for everything else – doctors, medicine, oxygen therapy… and this is so cheap but helpful! What was I thinking?!” So, yes, my friends, I think this is totally worth it. It can only help you, and the science backs it up that it does. It actively strengthens your brain, which is a big deal when Lyme is tearing it apart.

A disclaimer – friends, you should be forewarned that you may feel mentally exhausted and scrambled after playing these games. It can take a toll, but don’t be discouraged. It’s like all of the other treatment: you feel bad for a while, so that you can feel good later. (P.S. The mental scramble doesn’t last too long either).

I hope you enjoy these, and I hope that you feel mentally clearer quickly!

 

treatment part 5: hyperbaric oxygen therapy

While most doctors agree that antibiotics are a necessary part of Lyme treatment, they can be a gigantic bummer. Not only are antibiotics expensive, but they have a host of side effects that make you feel worse. And to top it off, it can be difficult to know if they are even helping.

Introducing (with great cheering)… Hyperbaric Oxygen Therapy (HBOT). This is a type of treatment that is easy on your body and considered mega-safe. I’ve done it for 9 months under the care of my neurologist, and I’m pleased enough to rave about it. Here’s how it works:

You begin by climbing into a tube or a chamber, and rest lying down. The air pressure around you is gradually increased 3 times more than normal atmospheric pressure. This allows your lungs to take in a greater amount of oxygen than it normally could. On top of that, you are then fed 100% oxygen through a mask. (This is a big deal. Normally, we breathe 20% oxygen and 80% nitrogen.) The combined efforts of pressurization and the oxygen mask leads you to breathe 15 times more oxygen than you would on your own. Your blood carries this massive load of oxygen throughout your body increasing tissue function, which helps fight bacteria, and stimulating stem cells responsible for healing your body.

The session lasts between 30 minutes and 2 hours. All you have to do is lie there and breathe. I like to bring headphones and listen to music or an audio book. Many patients even nap. At the end, the chamber or room is slowly depressurized, and you’re done. Easy peasy treatment. It’s that simple. And the best part is that oxygen therapy is a very safe treatment for your worn-out body. 

Hyperbaric Oxygen Therapy is used for a wide variety of medical problems. My neurologist mostly works with patients who have had strokes or patients with rheumatoid arthritis (RA). With stroke victims, HBOT specifically helps to heal damaged neurons and create new pathways for cognitive function and mobility. With RA patients, it suppresses inflammation—slowing the disease—and eases pain. With Lyme patients, it is believed that it could start killing the bacteria on the spot, and in the very least, that it helps to bolster the systems of our bodies that are being hit the hardest.

So, here’s my experience:

I began by doing weekly one-hour sessions in a hyperbaric chamber. Within 5 minutes, I would start herxing (During the course of treatment, Lyme patients experience intense Lyme and co-infection bacteria die-off. It happens so rapidly that their bodies can’t filter out the dead bacteria quickly enough… resulting in an intense burst of symptoms). My herxes were a sign that the hyperbaric chamber was significantly attacking the bacteria. I could barely walk after the sessions because of how much die-off was occurring. I would then spend the next 3-4 days in bed recovering.

My neurologist was enthusiastic about my body’s response and suggested that I bump up to having two sessions per week. This meant that I was herxing constantly. By the time I would recover from one session, I’d be walking into the next. Initially, I was excited to run full steam ahead with a treatment that was clearly helping, but over time it became clear that my body couldn’t sustain a pace of constant die-off. I was physically miserable, and it was emotionally taxing to be in bed constantly.

My Lyme doctor advised me to change my schedule to once every two weeks to allow myself some time to recover between sessions. I’ve done that now for the last 7 months, and I believe that this was a great choice for my emotional sanity and for what my body can handle. My Lyme recovery isn’t a 6 week intensive. It’s years of matching Lyme and co-infection die-off with bolstering my immune system. I can’t go full-force after the Lyme and forget to give my body the time and help it needs to actually fight.

After 9 months time, my HBOT-induced herxes have much decreased. I continue to have tiny herxes either in the chamber or shortly after, which means that it is still working and that it is well-paced. To my delight, I now generally leave feeling less pain and having more energy than when I walked in.

I can say with certainty that this has been a great treatment for me. I can see marked improvement since I began 9 months ago.  For one, my cardiac problems have much improved. I’m also thinking more clearly, noticing fewer gaps in memory and able to engage in more critical thinking. Overall, I have far less nerve pain, and I generally have a boost in energy for several days following each session. Not only is it killing harmful bacteria, but I’m experiencing greater quality of life now. Hyperbaric Oxygen Therapy for the win!

Here’s the great part. HBOT is one of the most affordable forms of treatments I’ve heard of; your insurance will likely cover it. Even if you did have to pay out-of-pocket, you may be able to find it at an inexpensive rate. Without insurance coverage, I pay $50 a session. Worth every penny.

While this has been extremely helpful for me, each Lyme patient responds differently to each treatment option. So, this may not be the ticket for you. Nevertheless, I’d encourage you to try it. Oxygen is safe for your body. It can only help, and I truly hope it does.

My dear friends, I wish great peace for you as you consider your treatment options, and I pray you find the one that works best for you.

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treatment part 4: intravenous antibiotics and picc lines

My dear friends, at some point your doctor may tell you that they are considering putting you on intravenous (IV) antibiotics—fluid antibiotics that are administered directly into your blood stream. Generally, this is because the Lyme and co-infection bacteria are raging too much in your body, and IV antibiotic treatment would put up a greater fight than simple oral antibiotics. IV meds work better because they immediately enter your blood stream—none of that pesky filtering-through-several-organs-first business. It’s more intense. It’s more costly. And it will be a very different season of treatment. I am so sorry if you ever find yourself in need of “more serious” treatment.03

If it is decided that you need IV antibiotics, you will probably need a PICC line—a peripherally inserted central catheter. It’s a gadget that is placed in your upper arm in an out-patient minor surgery. The PICC line is inserted into your arm and a wire carefully fed through a vein that allows the medicine easy access to your heart. It’s pretty cool (and a little gross if you’re squeamish like me). The PICC line makes it possible for YOU to give yourself IV antibiotics at home. Before this invention, you would have had to go to the hospital every day. The fact that you can infuse at home is amazing!

Now, I’m not going to lie. I had a pretty rough experience. I only received IV antibiotics for 3 months (much less than we planned). My first PICC line agitated my heart (which you’ll read about below), so I had a new one placed the following week. Over the course of those next 3 months, I had several allergic reactions, two staph infections, and my body went into septic shock. I had the one-in-a-million experience. Seriously, one-in-a-million. And I am just fine, and I can smile and remember lots of good things from that season…. So believe me when I say, it’s going to be okay. Even with all that, I ended up a little “better” than when I started. Just imagine how much good can be done when things actually go right!

While my experience probably feels discouraging, it wasn’t all bad news. Here are some great things you can look forward to:

  1. You should have much better die-off with IV meds, which means you should regain some quality of life during and after the IV treatment. Huzzah!
  2. You will finally look as sick as you feel, which as we all know is a strange sort of blessing when you have an “invisible disease”.
  3. You can let it be a wake-up call to summon “fight” that you didn’t know you had. You can come out a better advocate for yourself and more determined to fight!
  4. You will probably reach your out-of-pocket max with your insurance company, so you could have many months of free health care if you time this right! Bring on the expensive (free) meds!

Now, there are a lot of logistics to getting set-up with a PICC line and your IV meds. Your doctor will have a plan in place, and they can explain a lot of this to you. But for now, I want to share with you the kinds of things I would tell a friend who was preparing for this type of treatment… And we are friends, after all, aren’t we?

  • First, your Lyme specialist will refer you to a surgeon who will insert the PICC line. You’ll begin by having a consultation with the surgeon—you can ask them questions and then schedule a date for the insertion.
  • Next, your Lyme specialist will recommend a pharmacy who can handle the mixing and delivery of your IV supplies (they deliver to your door!). They will connect with your insurance company, the surgeon, and even set-up a home-health service who will send nurses weekly to check on you, clean and change the dressing around your PICC line, and draw blood for lab work. It’s amazing how much of the logistics are done for you—cue sigh of relief!
  • Before the surgery, I’d suggest doing a few things for yourself:
    1. Mentally prepare: You will be more wiped out than normal once you start IV meds. You need to prepare yourself and your loved ones for an even slower lifestyle. More rest. Less responsibilities (maybe none). What responsibilities can you shed?
    2. Practically prepare: Before you get the line, I would prepare a bunch of freezer meals (soups, enchiladas, chicken, and casseroles). You won’t feel like cooking, and you won’t be moving much during the infusions. You could also ask people to help you with this. Maybe fiends could prepare 1-2 freezer meals for you per week, so you have an extra buffer.
    3. Emotionally prepare: This will be a time to really fight for your health. You will likely have many phone calls a day between your doctors, nurses, and insurance. It’s awful and you won’t feel like doing it, but you have to keep fighting. This is what I was talking about when I said that you could learn to “fight” in a way that you didn’t know was in you. It’s awesome to determine yourself after this. It’s an investment in your future, and in your family’s future. I viewed “learning to fight” as an act of worship. I felt like Jesus had asked me to be vigilant in taking care of my body, so I wanted to lean in with all of my heart and be obedient. It continues to feel like worship to keep fighting when I don’t feel like it—trusting that He will give me favor as I talk with people, and the strength to do it.PICC-line-elbow_tcm9-45582
  • Okay, you’re all set for the PICC line. The insertion of the PICC line is actually pretty quick. They numb your arm with lidocaine, but some people need more than others. If you’re in any pain whatsoever, ask them to give you more. The only thing you should feel is pressure.
  • Once the PICC is in, you will get your first dose of IV meds at the clinic/hospital to make sure you won’t have an allergic reaction. They’ll bring you juice cups and crackers, while you ice your arm for a bit. Bring a book or movie on your iPad. You’ll be there for a couple of hours.
  • The PICC line itself should feel comfortable in your body. You’ll have some soreness where they inserted it, sure… Even some bruising at the insertion point. That’s normal. However, if you get home and are having lots of chest pain, you should call the surgeon. Nothing scary is happening. The line might be just a little too close to your heart, and your heart is letting you know. Your surgeon can take an x-ray and change the position of the line if needed.
  • Your arm will be bruised and painful for the first week, but then it should feel pretty normal. Most patients primarily complain of itching. Itching at the insertion site is normal and not preventable (I still have phantom itching a year later).
  • Your home health nurse will visit either the day of your surgery or the next day. They’ll teach you how to set up all of your equipment, how to infuse, etc. It feels a bit intimidating at first, but it’s totally doable, and if you are anything like me… You start to feel pretty cool knowing how to do all of this new stuff. As I said briefly, your home health nurse will take weekly blood work, and every 3-4 weeks, they will also run cultures. All of this is to make sure your liver and kidneys are handling the medicine, as well as to make sure that there is no sign of an infection in the line. They will send the results on to your Lyme Specialist so that they can adjust your medicines as needed. It’s awesome how everyone coordinates during this time.
  • The equipment that’s part of the infusion stuff has a dial on it which lets you regulate how quickly the meds are delivered to your body. My experience is that the dial is often wrong… It infuses too fast. So, take note of how long it takes to infuse the first time, and then experiment with the dial to make sure you find the right time (even though it will look like the wrong time).
  • Infusions take a long time, often several hours. You won’t be able to move much during this time (otherwise, the medicine won’t keep infusing). Find some good TV shows, magazines, and books that can help fill your time while you wait. I occasionally had friends come sit with me… But rarely. I was too exhausted to smile and talk during infusions. If you’d like some suggestions on what to do while you wait, check out my post: 14 ways to enjoy resting.
  • Lyme patients tend to develop allergies the longer they are sick. I learned during my PICC experience that I’m allergic to certain kinds of tape and the dressing that they use to cover the insertion site. Most companies do offer more specialized dressings for people who are more sensitive. If you are having crazy itching on your skin, ask your nurse or the company supplying your antibiotics to give you different dressing types.
  • IV-standIt is likely that any time you are having a first dose of a new antibiotic, your doctor will want you to be under the supervision of a doctor (like at an infusion center) so that they can monitor you for an allergic reaction. If your Lyme doctor isn’t local, it might be a challenge for you to find an infusion center where your doctor “has privileges”. It could be complicated, but it might not be. Your doctor will help you navigate through that. If you have a family doctor who has privileges in your local hospital, ask if they would be willing to help coordinate those “first-dose” infusions.
  • Sometimes allergic reactions can happen several doses into a medication. Your doctor should prescribe you an EPI pen, but I would also buy some Benadryl to keep on hand. Because IV meds enter your blood stream quicker than oral antibiotics, if you are allergic to a medication, it’s much more serious in IV form—hence the need for an EPI pen and Benadryl.
  • Invest in Saran Wrap and medical tape to keep your PICC safe during showers. Oddly enough, I found that it works better than the shower covers specifically marketed for PICC lines.
  • Get some every-day PICC line covers! Cut up athletic socks make excellent PICC covers. You can also buy them at Fresh Squeezed LymeAid — a shop run by a fellow Lyme Patient. PICC covers help the insertion site feel secure, as well as makes your arm look more normal.
  • Sometimes a bit of blood will be visible in the line. Flush it with saline. If it goes away and doesn’t come back, then it’s totally fine. If you are consistently having blood showing in the clear part of the line, I’d call your doctor or nurse about it.
  • Your line can get infected. You’ll want to take extra care not to get the bandaged area wet. You also should make sure you feel comfortable with how your nurse cleans it. Don’t shy away from protecting your line. I had TWO staph infections (which is very rare by the way)… I wish I had advocated more my thoughts about my nurse’s cleanings. You will know your line is infected if you have puss coming out of your line. Gross, huh? Your weekly lab work will also confirm the infection, and of course, you can (and should) always call your doctor if you are concerned. The good news is that it’s hard to miss an infection… So you should be just fine!
  • This will cost a lot if you do it. You will most likely hit your insurance policy’s out-of-pocket max this year, and it’s going to happen quickly. A lot of this, you will likely pay upfront (like your IV meds), and then be reimbursed for later. Here are some creative suggestions for how you could handle the in-between time:
    1. Ask the hospital / nursing agency / doctors office if they have financial assistance programs OR an option to do a monthly payment plan. In the past, we have been able to get a large percentage off by showing proof of our financial status.
    2. You could ask about the possibility of getting a discount on a procedure if you pay upfront. Many health organizations lose money as people neglect payment, so they are often willing to give discounts for people who pay at the time of service. We received a 20% discount by paying for my surgery this way.
    3. You could take a small loan from family or friends (if they are able). This could be a great blessing for you, and they will feel happy to get to partner with you during this difficult time. All the same, I’d plan to pay it off as quickly as possible. You want to honor your loved ones for coming to the rescue.
    4. And finally, if possible, plan to get your PICC line at the beginning of a year, so that you have as much free health care as possible once you’ve hit your deductible and out-of-pocket max. It will be extremely helpful to feel the freedom to get as much medicine and see as many doctors as you want… because it’s all free!
  • Keep a spreadsheet of all the medical expenses (including meds) that you are incurring. Then, compare it to your insurance documents as they come in. I was able to catch multiple mistakes where hundreds of dollars were owed to us. Super helpful! Because you will rack up so many expenses quickly, it can be difficult for your insurance to keep up. Stay on top of it, and then make as many calls as you have to to make sure that everything is correct. You have a one-year window from the time of service to make sure that claims are filed. Even once they are filed, they can take months and months to be finalized. This is one of the areas where you’ve got to fight to get stuff done. No one will fight for you harder than you… So get ready!
  • And the most important: Please, please, please… Don’t be afraid to call your doctor and your nurses. You will herx more than normal, you will have strange side effects (like air hunger), and they are there to help you out. Having a PICC line is a big deal, and your doctor knows this. It’s much more serious than using oral antibiotics. My doctor has never been more vigilant than when I had the PICC line. They are there for you. Take advantage of all of it. You don’t need to go through any of this by yourself.

These are just some of the things I wish I had known at the beginning. Your doctor and nurses will walk you through a lot of the practical stuff, so don’t worry too much about remembering all of this… However, it’s here if you ever need it!

This will be a time to bear down and brace yourself, but it can be good. There’s something amazing about going through a tough time and coming out determined and stronger. I have many of those people in my life… Inspiring people who let tough circumstances change them into something beautiful. I want to do that!

Let’s grow together. Let’s keep fighting.

treatment part 3: herxing

Right now, even as I’m typing, my body is herxing. Every part of my face, scalp, and ears are burning… and It’s working its way down. I’m lightheaded, and the room is tilting back and forth. I would categorize this as a minor herx.

This isn’t a “type of treatment” kind of post. This is a “what to expect during treatment” kind of post. Essentially, here’s what happens: during the course of different treatments, you will have periods of intense Lyme and co-infection bacteria die-off. It will happen so rapidly that your body can’t filter out the dead bacteria quickly enough… resulting in an intense burst of symptoms. This process of quick die-off and intensified symptoms is referred to as herxing.

Herxing is your frenemy. Have you heard that term? “Frenemy” is a funny term for “best friend” and “enemy”… It’s wonderful to have die-off, because it means that your current treatment is working (friend… yay!). However, you feel even worse than your normal level of awful (enemy…boo!). This is one of the few times in your life, that you should be happy when you feel bad… Lean into the “friendship” feeling.

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Herxing can bring out the “crazy” purple minion inside all of us. My best advice is to remember that herxing is a good thing. Ride it out. Keep your sense of humor.

For me, I’ve had many forms of herxing. By that, I mean that the duration, intensity, and what kinds of symptoms have varied. Here’s what I have noticed:

  • How I know: I know that I’m herxing because it’s like a rush of symptoms, much more than normal. It’s like those work-out bikes where you can select a random workout, and it’ll jump in one second from a level 1 intensity to a 6. That’s what herxing is like for me. It happens like a snap.
  • Kinds of symptoms: The symptoms associated with your herxes won’t always be the same. It seems to me that where the Lyme and co-infections have the strongest hold in your body directly correlates with what symptoms you’ll have while herxing. For instance, my lab tests show that Bartonella (a co-infection) is raging in my body currently. Bartonella is known for causing heart irregularities and problems in your brain. Not surprisingly, when I herx right now, my heart flutters, my blood pressure drops, and I have a lot of pain in my head. Not too long ago, Babesia was the co-infection rearing its ugly head, so I had herxes more related to Babesia symptoms. Make sense?
  • db6d464fcee21800440b5c90ea0fc446Intensity: My herxes have also ranged in intensity. With the minor herxes, I can still have a normal-ish conversation and people not know that I feel especially awful. With my most severe herx, I experienced intense air hunger (meaning I couldn’t breathe) and a host of other things. My doctor promptly sent me to the emergency room. If you’re ever uncomfortable with how much your’re herxing, you should definitely call your doctor / get yourself over to the ER.
  • How long: My herxes have lasted between 15 minutes and several days. It’s not a set formula. Don’t get too worked up about how long they last. It’s just good that it happens. Ride it out.
  • How to handle it: When I’m herxing, the best thing I can do is to rest. Don’t push it. Lean into the good die-off of bacteria. I eat especially healthy food, drink lots of water, eat salty foods (so that I retain the water I’m drinking), and cozy up on the couch with a movie(s).
  • P.S. (For my fellow female Lymies) Herxing tends to be elevated around the time of your monthly cycle. Oy vey… Just a heads up!

I highly recommend recording in your medical journal when you feel like you might be herxing, what symptoms you have, and how long it lasted. Talk to your doctor about all of it when you see them next. The goal for your treatment is to have tolerable herxing.

The full history and science behind herxing is fascinating. If you want to read more, check out Chronic Recovery Illness’s article.

Happy Herxing!

treatment part 2: supplements

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My dear Lymie friend,

Part of the disappointment of any medical treatment is the possibility that not only will this treatment not help, but that it also might hurt (i.e. antibiotics having bad side-effects). There are, however, things that you can try in Lyme treatment that can only help. Today, I want to talk with you about vitamin, mineral, and a few herbal supplements.

Because Lyme compromises your immune system, you are also likely to develop deficiencies. You may need to consume extra of many vitamins, minerals, and herbs to get what you really need. Your doctor can run blood tests to see where you have deficiencies. In a later post, I’ll talk about getting some of these nutrients from your food intake, but getting all the nutrients you need from food takes time and practice. In the meantime, you may want to start with pills. Some of the common supplements your doctor may ask you to start taking are:

Vitamin C – it’s a powerful antioxidant that helps protect sells from invaders. Sounds useful, huh? It supports overall immune system health. It is likely your doctor will want you to take several thousand milligrams of Vitamin C daily.

Iron – It’s very common to become iron deficient when you have Lyme. Iron helps your body make oxygen-carrying red blood cells. Without healthy red blood cells, your body can’t get enough oxygen, which hurts your chances of getting better.

Vitamin B Complex – Vitamin B is responsible for turning your food into usable energy, and that’s only the beginning. It also supports your nervous system, aids in the development of new red blood cells, and more. A vitamin B complex (a supplement carrying all 8 forms of Vitamin B) will help your body turn food into energy. Since Lyme is characterized by intense fatigue, it is no wonder that a Vitamin B deficiency is common.

Vitamin D – Vitamin D is necessary for your body to consume calcium and phosphorus. Not only that, but it also is linked to your immune system, helping you to withstand certain diseases. Yes, this too, is a common deficiency for Lyme patients.

Garlic – Taking garlic supplements (and consuming it fresh in your food) will make your life a lot better. It’s one of those things that has about 50 benefits including: maintaining healthy liver function (very important if you’re on heavy meds), fighting fatigue and stress, and useful in the prevention and treatment of many diseases.

Magnesium Complex – Magnesium is imperative for healthy bones, nerves, and muscles. It also regulates blood sugar, blood pressure, and making proteins. Yes, you definitely need this. On a personal note, I take it daily, but I also take it when I’m having significant pain in my face. My doctor suggested this trick: break open the capsule and put the magnesium powder under your tongue. Put just a bit of water on the magnesium. It will get hot. Hold it in your mouth as long as you can (a minute is good). You should start feeling relief in about 5 minutes. If not, take one more capsule the same way. This trick enables the magnesium to enter your blood stream faster, giving you quick relief.

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Ginger – Ginger is a great supplement to take for nausea. Generally speaking, it helps with a variety of stomach upset. Take it. You will be happier.

Curcumin – Curcumin is a great anti-inflammatory. Not only that, but it is also a great source of antioxidants. Yippy skippy! Another helpful supplement. I take this daily for my swollen, hurting muscles.

Berberine – Berberine is a supplement that is often used to aid the treatment of bacterial infections (Ding! Ding! Ding!), intestinal issues, and inflammation.

Krill Oil – This one smells bad, but don’t be deterred. This supplement gives you your Omega-3 fatty acids. It decreases swelling, lowers cholesterol, and improves heart health. Because heart problems are common with Lyme, it’s specifically useful.

Probiotics – Probiotics are live bacteria and yeasts that are good for you, particularly your digestive system. If you are taking antibiotics, it is especially helpful to take probiotics, so that the good bacteria in your gut that the antibiotics killed will be replaced. They can be found at your local health food store or somewhere like Whole Foods.

Grapefruit Seed Extract – GSE breaks up cysts (Lyme bacteria forms into cysts to protect itself from antibiotics). Breaking up the cysts allows your antibiotics to kill Lyme and co-infection bacteria.

Gamma-Amino Butyric acid – GABA is an essential amino acid that works in your central nervous system. It essentially calms down nervous activity in the brain by inhibiting nerve transmission. In Layman’s terms, sometimes with Lyme the neurotransmitters in your brain are firing too quickly, and GABA helps slow it down to what it should be. GABA is already a naturally occurring substance in your body, but us Lymies sometimes need extra.

Mitochondrial Energy Optimizer – Basically, each cell in your body has mitochondria, which helps produce cellular energy. If mitochondrial function decreases (which can be common with many diseases), organ function can decrease as well. Taking this supplement makes your mitochondria happy again.

Now, I say all of this to be helpful, but obviously… I’m not a medical professional. Don’t start taking these on your own. I’d strongly urge you to ask your doctor about any that interest you, and see what he/she thinks. These have all been recommended to me by my doctor (notice I didn’t tell you the frequency or dosage), but she has the full picture of everything that is going on in my body. She has told me to get them, because they are specifically helpful to MY Lyme and co-infection battle. I would imagine that many of these are helpful across the board. However, your doctor will have the best thoughts about what will help you.

One last thought: not all vitamins and minerals are created equally. Don’t just look for the cheapest option. This is another reason talking to your doctor is helpful. He/She may have a specific brand that they want you to use. What I do is find out which brand, dosage, and frequency my doctor wants me to take. Then, I go on Amazon to see if I can get it at a better price than my local health food store. Since just getting out of bed can be a chore, I’m happy when I can get it shipped to my door for free with Amazon Prime.

There’s a lot more to talk about with treatment options. Stay tuned.

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treatment part 1: antibiotics

Let’s just have an honest moment, shall we? Disseminated Lyme (Lyme that has been in your system longer than 6 weeks) has no cure at this point, which means that all treatment is essentially experimental. There are people who get significantly better using certain medicines or therapies, but it doesn’t work for everyone (hence no “cure”). Most people who have been sick for 5+ years end up trying MANY forms of treatment, because you never know what will work! There are so many thoughts about treatment out there, and I just want to be up front and tell you that I will only write about the things that I’ve personally tried, and how I felt about it. This will come over the course of several posts, and I’ll rely on readers to comment about other forms of treatment that they like or dislike.

Antibiotics. Oh boy… antibiotics. This is generally the first type of treatment that your doctor will want to try with you. This probably has the best results of any type of treatment, so let’s talk about it:

Antibiotics are tough on your body, especially if you use them long-term, but they can be really helpful. Your doctor wants to use a serious drug because what is happening to you is serious. Make sense? You have to match the level of gravity. Some people see significant improvement to the point of feeling that they are “in remission”, while some people aren’t really sure if it was helpful or not.

My doctor is fantastic, brilliant, and humble. What more could I ask for? Not only that, but she’s highly regarded in the Lyme community, and under her care I was on antibiotics consistently for 2 years and 3 months. I tried at least 20 different antibiotics during this time. It seemed like every time I had an appointment with her, we switched at least one if not two or three of my antibiotics to a different variety. For a while it seemed random to me, but over time, I’ve realized that she’s been smart with her decisions.

Basically, here’s what happens: your doctor is probably going to first try to treat your co-infections (remember, you probably have a cocktail of diseases transmitted through the tick), not necessarily the Lyme. The Lyme is like the center of the onion, and you have to peel back the co-infections first. There are particular antibiotics that work best with each co-infection. However, after a while of being on the antibiotic, that bacteria becomes smart and figures out how to protect itself, which means it’s time for you to switch to another antibiotic that can keep working on killing it. THIS IS WAR, and may I suggest that you view it that way. You have extremely smart, sophisticated, mafia-like bacteria that are in every cell wall of your body, and your doctor is trying to lure them out, and kill them.

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I genuinely believe that the antibiotics I took helped reign in certain debilitating symptoms, and I am thrilled by it. Particularly, pre-antibiotics my muscles were so sensitive to the cold and wind, that even in summer I had to be in thick long-sleeve clothes and couldn’t be outside. The slightest wind would make my muscles cramp for days. That’s nearly gone. I’m 98% better with that symptom! My overall pain levels are much decreased as well. I am less often in debilitating pain. STILL—I have other symptoms that have continued to get worse and worse with time. I don’t blame the antibiotics for making me worse. I simply believe that the bacteria keeps wreaking more and more havoc. SO—I believe they helped me to a certain extent, but didn’t take me all the way to “remission” or feeling like my health was at an acceptable quality of life.

There is a lot of controversy over long-term use of antibiotics. I get that. I understand. And whether you do this is really a personal choice. But what I think people don’t fully grasp is that this disease is serious (particularly when it comes to the heart and brain problems that accompany Lyme). While it is generally not life-threatening, it can still completely destroy your quality of life. You don’t want to let it go unchecked, and it’s okay to try things that you never thought you would – including long-term antibiotic use. It’s your decision, and it’s your body. And you have to fight for your future (as well as your family’s future) in the way that you feel you should.

So, the bottom line is that I am still having extreme symptoms. Antibiotics, for me, have not been enough to achieve “good enough” quality of life. I’m still on the hunt, and I’ve got a lot more treatment options to talk about in future posts. Some of the things you can look forward to are: supplements that I’ve used and loved, oxygen therapy, brain remapping (whoa cool!), and more.

Now, that I’ve been a bit more technical and non-personal, I do want to add a very important personal note. — I make a lot of medical decisions (with my husband’s help) after praying about it. As I said, every Lyme treatment is technically experimental, which makes it all the more confusing to know what is the “right” thing to do. My husband and I love the Lord, and seek His help on all of this stuff. We really do feel like we hear from the Lord when we ask for His help, and it gives us the freedom to step forward in faith with different treatment, knowing that I will be okay. Not surprisingly, we feel like we have made the right decisions for us, and that He’s been with us every step of the way. We have peace and comfort when it doesn’t make sense.

There is a lot in Christianity that has been misrepresented throughout the ages, and if you haven’t had good experiences with Christianity, may I just tell you briefly that God’s kingdom is about love, forgiveness, grace, joy, comfort, peace, and hope. He will show up for you if you ask Him to. The God I have a relationship with is faithful, comforting, gracious, kind, and provides for me. Send me a message if you’re interested in hearing more about how you can know God too.

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