This article was first published on ProHealth on May 17th, 2018. It was later removed for reasons outlined in this notice. Most of the links on this post are informational, but a few are affiliate links to help maintain this website. For people with Lyme disease there is no one-size-fits-all approach to treatment. Each patient will have a unique treatment plan that will most likely change over time. The most common treatments are antibiotics and herbal protocols, but outside of that there are emerging therapies, such as IV nutrition/light therapy and Hyperbaric Oxygen Therapy (HBOT). With so many options it’s difficult to determine what approach or combination of approaches is right for you. If you've been considering HBOT, here is everything you need to know from a Lyme patient's perspective. As a complication from Lyme disease I developed osteomyelitis, otherwise known as a bone infection. It was while I was doing research for treatment of bone infections that I first learned about Hyperbaric Oxygen Therapy. Later I found out HBOT is beneficial for symptom reduction in Lyme patients even without osteomyelitis. So how does Hyperbaric Oxygen Therapy work? To receive HBOT, a person is placed in an enclosed, pressurized chamber. This chamber can be a small room that fits multiple people or a large tube-like structure that fits one person. Chambers can be hard or soft-sided and vary in levels of pressure. During therapy medical grade oxygen may be administered through a cannula, mask, or special hood. A typical session lasts from 45 minutes to two hours depending on your condition and tolerance. The theory behind HBOT is that the tissues of the body cannot perform properly without oxygen, and in some illnesses oxygen is not able to reach where it needs to go. The pressure of the chamber assists the lungs in acquiring more oxygen than is possible with normal breathing, which is then carried by the blood to the tissues. This therapy is approved for multiple conditions, such as carbon monoxide poisoning, decompression sickness, burns, diabetic wounds, and certain types of infections. In Lyme disease, HBOT is used to increase oxygen to the body in order to kill off anaerobic (can't exist in an oxygenated environment) bacteria. It also has the capacity to increase immune function and repair damaged tissues. I am fortunate, because there is a clinic near me that uses HBOT as part of comprehensive Lyme treatment. Because it is a relatively non-invasive treatment, I decided to pursue it. Then I saw the size of the chamber and I almost changed my mind. I have claustrophobia and need sedation for MRIs. The HBOT technician at the clinic talked me through the process and told me that most people with claustrophobia don't have problems, because the chamber is more spacious than an MRI. After my first treatment, I found this to be true for me; however, it should definitely be a consideration for others with claustrophobia. Especially, because due to the pressurization, the chamber needs a few minutes to depressurize before you are able to get out. Prior to my first treatment the HBOT technician walked me through what to expect and provided me with a walkie talkie in the chamber in case I had any questions or concerns during the session. Once you are in the chamber, the technician will start pressurization. Once it begins, your ears will pop multiple times like you are going up in an airplane. This can be slightly uncomfortable, but not painful. Your ears will no longer pop once the chamber is fully pressurized. In the pressurized chamber, you will likely not feel anything during the treatment, with the exception of a sense of heaviness to your body. It tends to be a relaxing experience and a good time to take a nap or meditate. At the end of the session, when the chamber is depressurizing your ears will pop again. It is possible for Lyme patients to have detoxification or Herxheimer reactions from HBOT, because of the antibacterial properties. Personally, I've had four sessions. After the first session I only had minor fatigue, but after the second session I had a huge Herx. I experienced a severe headache, nausea, and had to stay in bed for a few days to recover. The following two sessions, I only experienced slight fatigue that lasted about a day. The reaction to treatment is different for everyone, just like with antibiotic or herbal treatments. When doing HBOT, make sure you are doing a lot of detox. A few supplements that may be helpful during HBOT are binders, like activated charcoal and bentonite clay, magnesium, and the B vitamins. Other common detox strategies, like good nutrition, infrared sauna, and Epsom salt baths may also decrease any Herxheimer reaction you may experience. If you do not have one of the approved conditions and have HBOT prescribed by a medical doctor, it is rarely covered by insurance. You will most likely need to find a private clinic and pay out of pocket. The number of sessions per week and number of weeks/months you need will all depend on your tolerance, doctor's recommendation, cost, and patient preference. As an example, my current treatment plan is weekly for 8 weeks, then every other week for 2-3 months, then monthly on an ongoing basis. However, I've heard of people doing as many as one hundred sessions. Some people use HBOT as a maintenance treatment after antibiotic treatment is completed. Lastly, it is very important to find a skilled practitioner, because improper administration can be dangerous. There are some risks, such as ear injuries and lung collapse. These are rare and HBOT is generally considered to be a safe treatment. Read reviews of the clinic you are considering and try to get feedback from other patients. Another good idea is to interview your technician before starting treatment. Write up a list of questions and concerns and ask your technician to talk you through what to expect both during and after a session. So far, I have a positive impression of my experience with Hyperbaric Oxygen Therapy and have decided to continue with the protocol. Time will tell if this is a miraculous treatment or simply another tool in my healing toolbox. "Breath is the link between mind and body." - Dan Brule
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This article was first published on the Global Lyme Alliance blog on April 19th, 2018. Most of the links on this post are informational, but a few are affiliate links to help maintain this website. Before I was diagnosed with Lyme disease, I'd already been diagnosed with multiple autoimmune disorders. At the time, I turned to the internet to learn about diet protocols and treatment options and found an active autoimmune community. After I was diagnosed with Lyme I went searching for a similar community to help me cope with a new and overwhelming diagnosis. I didn't know how life-changing my being introduced to that community would be. I've met so many knowledgeable and inspirational people since then who've become my mentors and friends during this journey. That being said, it's not always rainbows and sunshine on social media. There are some definite downsides and moments where a good social media detox is warranted. Here is a list of the pros and cons of social media when coping with Lyme disease or other chronic illnesses. Pros: 1. Meeting people who have the same illness. My non-Lyme friends give me strange looks when I tell them I'm going to coffee with a Lyme friend I met online. Getting together with someone I met on the internet is probably not something I would've done before contracting Lyme, but now it seems completely normal. There is a very special connection between people who are diagnosed with the same illness. I've been fortunate enough to meet in person many of those I first met online and every time I meet someone new we click instantly and talk for hours. Even if you're not comfortable meeting face-to-face, it's comforting to interact with people online who can relate to what you’re going through. 2. Resource sharing. While we are making progress, treatment for chronic Lyme disease has not yet been mainstream. Some of our doctors are forced to hide that they treat Lyme out of fear of losing their medical licenses. Many Lyme patients get referrals to Lyme Literate Medical Doctors (LLMD) and other Lyme-literate medical professionals through websites, forums, and Facebook support groups. 3. Sounding board for symptoms and treatment. It has been said that Lyme disease is a do-it-yourself disease. This was true for me until I found the online Lyme community. Lyme disease symptoms can change daily or even hourly, so it's comforting when you learn that someone else has had a similar symptom. It also helps to chat with someone who has had a similar treatment protocol, so you can be at least in part prepared for the side effects. Naturally, our doctors have the final say with regard to treatment, but information sharing among other Lyme patients is invaluable. 4. Community. No one should have to face a devastating illness alone and there is a real sense of belonging in the online Lyme community. Having this community is like an informal support group. They are there to chat with you on your bad days and for you to talk to them on theirs. The community listens to each other's stories of successful treatment and things that didn’t work out. I'm so proud to be a part of this group. 5. Humor. Many of the social media accounts that I follow are lighthearted and include humor. This is where I find funny chronic illness memes and jokes about the mountain of supplements we all take every day. It can't be all seriousness all the time. Cons: 1. Comparison. One of the biggest problems with social media when it comes to chronic illness is the inevitable comparisons that happen. It may cause you emotional pain to see other people getting better when you are still struggling, or on the other hand, you may see someone who is critically ill and you fear the same thing will happen to you. 2. Negativity. The reality of illness can be very negative, but with social media sometimes you don’t have a choice about whether or not you are exposed to negativity on a certain day. You may be having a good day and then encounter internet negativity (which may not be particularly relevant to your case) and it shifts your entire mood. 3. Rejection. Just like in face-to-face relationships there is a social hierarchy online as well. Maybe you follow someone on social media and they don't follow you back, or you notice someone else has more followers than you do. It can feel like a rejection, even if it’s not what the other person intended. 4. Fear. Frequently, Lyme advocacy accounts show the harsh reality of Lyme disease, such as severe disability or loss of life, in order to make others aware of the devastating effects of this illness. Personally, when I hear someone has lost their life to Lyme, my first reaction is sadness for them and empathy for their loved ones; my second response is fear of the same thing happening to me. 5. Misinformation. You've heard it a million times, don't believe everything you read on the internet, for much of it is misinformed. This is true in all subjects. Also, what worked for someone else won't necessarily work for you. Make sure you look at the sources—are they reputable?— and check with a medical professional before trying anything new. It's a personal choice for everyone as to how involved they want to be on social media. For some, it's a beneficial resource but others may not be interested in getting involved. Each person must weigh the pros and cons and decide what is right for themselves. "I believe in one day and someday and this perfect moment called now." - Jacqueline Woodson This article was first published on ProHealth on March 27th, 2018. It was later removed for reasons outlined in this notice. Most of the links on this post are informational, but a few are affiliate links to help maintain this website. When I was first diagnosed with Lyme disease, I had problems with digestion. My gut wasn't breaking down food and I either had constipation or loose stool. My doctor suggested magnesium and probiotics, and the next day my stomach troubles were gone. I was shocked that supplements could work so fast. Supplements have a reputation of needing to build up in your system over time in order to be effective, but there are some that work more quickly than others. People with Lyme disease are usually on numerous medications and supplements, so when you take a handful of pills it’s hard to detect which ones are improving your symptoms. My experience with magnesium and probiotics made me curious about what other supplements people can feel the effects of after taking, and/or what symptoms they will experience if they neglect to take these. So, I asked the members of my Lyme disease support group to weigh in. 8 Supplements For Lyme Disease You Can Feel Working: 1. Magnesium Magnesium is one of the most important minerals in the body and has over 100 functions, so when you are magnesium deficient you will definitely feel it. People with magnesium deficiency report muscle cramps, pain, anxiety, fatigue, and insomnia. The amount of time it takes to feel improvement from these symptoms is correlated to the level of magnesium deficiency in the body. However, some people report relief from muscle cramps and improvement in sleep after only 1 or 2 doses of a magnesium supplement. For problems with digestion, Magnesium Citrate, in liquid or pill form, has been reported to help loosen the stool and relieve constipation relatively quickly. 2. Probiotics Usually, probiotics are for long-term regulation of the gut bacteria, but you may be able to notice a difference right away. Whether or not you can feel a probiotic working depends on the type of probiotic you are taking. If you are taking a probiotic for digestive issues or constipation they may work within a few hours. Two common types of bacteria, Lactobaccillus and Bifidobacterium, can double within three hours, which may cause a noticeable change. 3. Melatonin This popular sleep aid is known for working swiftly. Melatonin is a hormone that your body naturally produces when it starts getting dark, to prepare you for sleep. With the increase in artificial light in our lives with smartphones and computer screens our bodies get confused and melatonin production decreases. Supplemental melatonin isn’t affected by light, so it helps people fall asleep and stay asleep. Most people feel the effects within thirty minutes. 4. Liposomal Glutathione Glutathione is a powerful antioxidant that prevents oxidative stress, and to helps to build up tissues and the immune system. The liposomal form of this supplement is especially fast acting, because it bypasses lining of the gut and enters into the bloodstream. It also is delivered directly into the cell, which optimizes the effects of the nutrient. By helping the liver detox, liposomal glutathione also allows you to fall asleep faster and have a deeper, more restful sleep. This in turn makes you feel more energized the next day. Better yet, you don't have to use it every day to feel the benefits.
5. Iron Chronic illness and iron deficiency often go hand in hand. When you are iron deficient you feel tired and can have pale, dry skin, heart palpitations, headaches, and dizziness. Your doctor can order a blood test to determine if you iron deficiency or have difficulty absorbing iron. Once some people start supplementing with iron they report feeling an increase in energy. It all depends on how low your iron stores were to begin with and how well your body absorbs iron. Even if you don't feel it immediately, you will most likely feel the fatigue lift within a few days or weeks. Supplementing with iron can be especially effective when a woman is menstruating. Because women lose iron during that time, an iron supplement may help give them a boost. 6. CoQ10 CoQ10, or coenzyme Q10, is a naturally occurring substance, which the mitochondria use to produce energy and which makes our muscles contract correctly. It’s also a strong antioxidant. Research on CoQ10 is still in the early stages, but research shows that it may help to prevent heart disease. Because of its cardiovascular benefits, some people feel improvement in their cardiac symptoms when they take CoQ10. Some even report a reduction of heart palpitations, which are a common symptom of Lyme disease. Remember, if you have heart palpitations, it's important to be evaluated by a doctor before taking anything new. CoQ10 should also be used under a doctor's supervision, because it can increase the risk of bleeding and lower blood sugar. 7. B12 You’ve probably heard that B12 shots are instant pick-me-ups, but some also experience a rapid reduction in fatigue after taking a B12 supplement. Because the B vitamins are water soluble, they are absorbed more quickly into the body than fat soluble vitamins, like A,D,E, and K. People with Lyme disease often feel tingling in their hands and feet but report that it goes away after B12 supplementation. It’s important to note that if you are severely deficient in B12 it may take a while to notice a difference in energy and other symptoms of B12 deficiency, like tingling, muscle weakness, and dizziness. 8. ATP ATP stands for adenosine triphosphate. It's the chemical in the body that powers the cells. In the body ATP is produced during the Krebs Cycle, which is basically how cells metabolize and create energy in the body. Some people with chronic fatigue report a significant increase in energy levels when taking ATP. In fact, when they don’t take it they feel tired and sluggish. Also, because ATP works in the muscles it can help to ease muscle pain. Remember, supplements will have a different effect on everyone, depending on the unique chemistry of each individual. Work with your doctor to find the best supplements for you and your health issues. Whether you can feel them working or not, supplements are an important addition to any health plan. "It's not what you look at that matters, it's what you see." - Henry David Thoreau |
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