Tips for Newbies
Helpful Hints for Successful Treatment
Treating Lyme Disease or MSIDS (multi systemic infectious disease syndrome) is unlike treating for common diseases such as bronchitis where you start feeling better upon taking antibiotics. It is my experience that your best bet for appropriate treatment is to get to a Lyme literate doctor who is educated on the complexity of diagnosing and treating Lyme/MSIDS.
With MSIDS, antibiotics kill the pathogens leaving them floating around in your blood stream for your immune system to finally notice. This causes a herxheimer reaction in which your body starts attacking itself and is a type of autoimmune response.
Detoxing these dead pathogens is paramount for successful treatment and the following have had success:
Sweating. Your skin is the largest organ and sweating causes impurities to get out of the body. There are many ways to sweat including hot baths. Putting things like epsom salts in the bath also will give your body needed magnesium which can help with muscle pain. https://madisonarealymesupportgroup.com/2017/09/29/epsom-salts-for-lymemsids/ Some like to use hydrogen peroxide and/or baking soda. Depending upon tub size a cup of any of these agents is a good place to start. Make sure the water isn’t hot enough to burn but warm enough for sweating. Also, drink plenty of good filtered water during the bath. Other baths:
- Apple Cider Bath: Add 2 Cups of apple cider vinegar to bath.
- Epsom Salt Bath: Dissolve 1 Cup Epsom Salts
- Clay Bath: 1/2 C Bentonite clay, 1/2 C Epsom Salts, 1 Tablespoon yellow root powder
- Essential Oil Bath: Add 5 drops lemongrass or coriander to bath with sea salt or 1/2 C epsom Salts.
Saunas are good as well, particularly infared. Exercise is another way to sweat just make sure you don’t overdo it as fighting MSIDS is taxing enough. Walking is safe, effective, free, and gets you outside in the fresh air and sunshine. If you haven’t exercised much, start by going around the block. As you develop more stamina, go further. Patients have used things like the Biomat successfully as well. https://www.biomat.com
One word of caution: start slowly and see how you respond. For some, these hot baths wipe them out. If this is a problem for you – perhaps do it at night before bedtime. Also, be careful you aren’t dizzy as you don’t want to slip and fall. It’s wisest to have someone close by in case you need help.
Drink plenty of fluids, particularly water. Some have squeezed lemon juice into their water for taste and its tonic properties. Coffee and green tea have great properties as well – just don’t overdo the caffeine.
Coffee Enemas and Colonics: https://madisonarealymesupportgroup.com/2016/06/06/the-coffee-enema/ Anything which helps move toxins out of the body is beneficial. Many find coffee enemas and colonics extremely helpful while in treatment. I’ve done both and can attest to the benefits. In the link above, there are tools to help make this simpler for you as you probably won’t keep these things up unless it’s simple. Some use a bulb syringe for quick application, others use the stainless steel bucket as in the video.
Herbs. Parsley is a wonderful herb for detoxing as well as milk thistle (detoxes the liver). Nutrimedix has a line of herbs, also sold on Amazon, such as Burbur, Parsley, and Pinella. For more information on these herbs and their properties go to: http://www.nutramedix.ec/ns/lyme-protocol. You can click on the herb and will get a video and pdf with valuable information. Master Herbalist, Stephen Buhner, has also written many excellent books on treating MSIDS with herbs. You can use these alone or in conjunction with antibiotics. http://buhnerhealinglyme.com
Alpha Lipoic Acid (ALA): Found in every cell of the body, it chelates and neutralizes harmful chemicals and increases the formation of glutathione which helps remove them. Some warn to not use unless you’ve had your mercury (silver) fillings removed: https://www.healthnutnews.com/vaccine-detoxes-for-adults/
Fiber: a roto-rooter for the colon, it cleans and absorbs toxins. Celery and other green leafy vegetables do wonders as well as plain psyllium husk fiber. Check ingredients as you don’t want added sugar and colors.
Chelation. At some point in your treatment you may want to consider chelating as it removes heavy metals from your body which very well might stand in the way of healing.
Dry Skin Brushing. Get a natural bristle brush to clear pores of debris. It will also stimulate the lymphatic system which harnesses toxins. Start at your feet and move toward your heart by making wide sweeping motions, overlapping the areas as you brush.
Jump on a Trampoline. This will also move your lymphatic system. Don’t do this if you have dizziness.
Eat plenty of Cruciferous Veggies. Kale, Collard, and Cabbage increase the detox activity of cells in the liver. Steam for 2 -4 min to keep the living enzymes then add sea salt, black pepper, diced avocado and extra virgin olive oil.
Ozone. Blood ozone with or without UV light puts valuable oxygen into your body much like exercise does but even more effectively. This will help every cell in your body do what it’s designed to do and will help with detoxification as well.
NUCCA Chiropractic Care: https://nucca.org/what-is-nucca/
When the craniocervical junction (head and neck) is compromised, the NUCCA process works to reduce interference to the nervous system using a precise, gentle, non-invasive spinal adjusting technique. By using precise and objective x-rays of the head and neck, along with mathematical measurement analysis, NUCCA doctors are able to establish a misalignment pattern unique to every person. There is no twisting, cracking, or popping. Being out of alignment means dysfunction to the central nervous system. To find a doctor: https://nucca.org/search/
Massage: There are numerous types of massage to consider. Do what feels best to your body. Due to the fact many of these pathogens love muscle and tendon tissue, you may find massage painful. Tell your practitioner you are a Lyme/MSIDS patient and that you may need to go slowly to work up to the full strength of the massage. Some find lymphatic massage particularly helpful as it gets the lymph moving to assist the body in detoxing.
Cupping: Cupping is a technique often used with massage to help the body detox. The practitioner puts cups along the muscles of the spine which pulls the fascia away from muscle tissue allowing blood to flow better. Along with better blood flow you get better circulation of oxygen, treatment, and valuable nutrients.
Raindrop Technique: Using essential oils and massage, the practitioner applies specific EO’s onto the spine and feet allowing the body to detox better. Many of these EO’s are also antimicrobial in nature and are being directly absorbed into the blood stream, particularly in the spine where many pathogens hide.
Accupuncture: This Chinese medicine technique uses needles to help the body be stronger.
Accupressure: Using similar technique as acupuncture, there are no needles involved in accupressure.
For more ideas: http://www.tiredoflyme.com/detox-methods.html Chris, the author of the website Tired of Lyme, has far more examples and has asked folks to rate their favorite detox methods. Please add your own experiences, and always remember that what worked for one person may not work for another, which is why you sometimes need to keep experimenting to find what works for you.
Unless you have an acute case (a recent tick bite), treatment may take anywhere from months to years. This is important from many aspects.
- Now is the time for pristine health habits. You might need help with your diet so you can heal. Many have allergies, food and or chemical sensitivities and/or leaky gut which need to be addressed so you can heal. Most literature states to avoid sugar, gluten, and alcohol as well as anything that causes allergy type symptoms.
- You may need treatment to help you sleep. One of the hallmark symptoms of MSIDS is fatigue and sleep issues. Many have insomnia which leads to extreme day-time fatigue. If this is a problem, make sure you discuss this with your doctor. Many have found help with the use of things like Gabapentin, LDN (low dose naltrexone) https://madisonarealymesupportgroup.com/2016/12/18/ldn/, natural progesterone, Valerian Root, and other sleep aids. Without sleep you will not heal.
- You need to fix the imbalances in your body. Based on your exams, Many LLMD’s will order lab work to determine your body’s weaknesses and imbalances. Many need to go on thyroid medication and perhaps low dose hydrocortisone and/or other bioidentical hormone supplementation as MSIDS often puts the body into adrenal fatigue. It is quite common to be low in Magnesium which is an important major mineral responsible for some 350 biochemical reactions in your body (it also helps sleep). Your lab results will indicate what you need; however, here’s a great article showing you what to look for. One possible sign is constipation. http://articles.mercola.com/sites/articles/archive/2015/01/19/magnesium-deficiency.aspx You may be tempted to opt out of this part of treatment due to cost. Don’t. Your body needs all the support it can receive as it is in a major war.
- Now is NOT the time for vaccinations. Despite what you hear in the media about immunizations, there is another side to the coin and you need to do your own research to determine what is best for you – particularly since your immune system is compromised due to a serious infection(s). Every single MSIDS patient I know who got vaccinated had a relapse or worsened. For starters, read: https://madisonarealymesupportgroup.wordpress.com/2015/06/19/a-word-on-vaccines/ https://madisonarealymesupportgroup.wordpress.com/2015/07/15/vaccines-continued/ https://madisonarealymesupportgroup.wordpress.com/2016/02/05/zika-sexually-transmitted/
- You probably will need emotional support. Another unfortunate thing that happens to MSIDS sufferers is isolation. People don’t understand what you are going through or don’t believe it. Frankly, I wouldn’t believe it myself if I hadn’t lived it! Sometimes these people are in your own family leaving you with a great sense of loss and helplessness. Often you just need someone to understand. There are many excellent support groups here in Wisconsin. Trust me, we get it. If you would like to become a “follower,” to this website, clicking the blue “follow” button, and you will receive an email each time I post. I do post M-F typically 3-4 articles a day. Delete what doesn’t interest you and read what does. Learning about Lyme/MSIDS is like receiving information via fire-hose. There’s a lot to know as it is imperative you are a partner in your own healing. If there isn’t a support group in your area, start one!
A few words about treatment
Each LLMD has their own approach to treatment. You will find each practitioner quite passionate about their regimen. This is one of the challenges as a patient; to find a practitioner you agree with as treatment is highly variable. It is not uncommon to change doctors sometime in treatment. Often people start out very inexperienced and desperate. As time progresses you become more knowledgable and develop an opinion of your own about treatment. There is nothing wrong with changing doctors; however, we hope to help explain the various doctors and their approaches to you at meetings so you can make an informed decision at the onset. And if you live in a state other than Wisconsin, please contact your local support group for important and helpful information regarding doctors, fees, approach, etc. Feel free to ask questions as someone in the group probably has experience one way or the other. Also, it has been a goal of mine to post the talks given by these WI LLMD’s so you can see them for yourself firsthand. If you type the doctor’s name in the search bar you will be directed to their talk to the group.
Some doctors use a straight antibiotic approach, some pulse, some use ozone or herbal products, or a combination of all these approaches. Some put high value on diet, chelation, ozone, and other supportive measures, where others don’t even discuss these options. Whatever approach your doctor takes, quality pro and prebiotics are extremely important for your GI tract. As antibiotics take a toll on your GI, and since treatment is usually months to years long, it is quite easy to develop Candida, or yeast issues. Some doctors sell these products right in their offices, where others just tell you to find good quality sources. This again is an area where the support group can help you find good sources as there is much experience within the group as to what works and what doesn’t. Also, these same folks usually have found the cheapest sources as finances become a top priority as well.
It is daunting in the beginning of treatment to keep all of the various meds and supplements in order – particularly the timing of them. It is important to separate your antibiotics from your pro and prebiotics as well as your supplements. Take your morning probiotic when you first wake, giving it at least 30 minutes to an hour before you take your antibiotics. If you are taking thyroid and hydrocortisone, you may take that with your morning probiotic. Try and take your evening antibiotics early enough that you have a number of hours before taking your evening probiotics and/or prebiotics before bedtime. Supplements also need to be separated from antibiotics by a number of hours as they will interfere with absorption. Feel free to ask these types of questions at the support meeting as folks have been doing this for years and have it nailed down. And of course run everything by your doctor and even a pharmacist who is privy to everything you are taking. Pharmacists can give very helpful information about drugs and their interactions. Here’s a nifty site you can type in all your meds for yourself to see possible interactions: http://www.rxlist.com/drug-interaction-checker.htm
Herxing may be felt within minutes to days of taking antibiotics. Common symptoms include: increased fatigue, muscle or joint pain, rashes, sight, sound, or touch sensitivity, irritability, dizziness, insomnia, cramping, night sweats, hyper or hypotension, headaches, swollen glands, chills or fever, nausea, bloating, constipation or diarrhea, low grade fever or feverish feeling without fever, heart palpitations, facial palsy, confusion, ringing in the ears, uncoordinated movement, and severe itching. (Although herxing can manifest in a thousand different ways). Go here for some of the more bizarre symptoms.
While herxing is never fun, you can relish the fact you are killing pathogens. If the herxes are too strong; however, you need to communicate that with your doctor. Sometimes people need to slow treatment down or even stop altogether until their body detoxes properly.
To make your appointments are as efficient as possible I highly recommend getting a month-at-a-glance calendar that has lines for writing on it. On a daily basis you should log your major symptoms and changes down. Appointments with LLMD’s are typically only every 2-3 months – a long time to have to try and remember symptoms. By keeping a daily tally, you can write/type up an executive summary with the main symptoms for your doctor to look at during your appointment. This will help you stay focused on how treatment is affecting you. I had to do this for myself and my husband and I found this practice indispensable. Some of you are having to track multiple people! This will definitely make your life easier and your time with your doctor more fruitful. Remember, there aren’t any accurate tests for any of this. Symptomology is key for proper treatment, but you need to have a way to remember them in order to be properly treated!
Then there’s the issue of coinfections. Remember, Lyme is typically just the tip of the spear and there are many other pathogens ticks can transmit. In the beginning it is common to perhaps have only a few major symptoms. As you begin treating you may notice that some symptoms wax, wane or entirely disappear or entirely new ones will crop up out of the blue. This is horribly frustrating as it is one of the hardest aspects of treatment. No two patients look alike (although there are often similarities) and no two patients respond identically to treatment. It’s hard enough just to keep track of what your own body is going through on a daily basis! Over time you will notice trends and you will become experienced, but in the beginning it’s a wild ride. Hang on and don’t let go!
Lastly, be gentle with yourself. Remember your body is in a battle and you will feel it physically, mentally, emotionally, and spiritually. While many will not be able to see this battle going on externally, I guarantee you will feel it internally. It’s also important to remember that once Lyme/MSIDS is in the brain it can cause a whole host of psychiatric symptoms that are not well acknowledged, understood, or discussed. For instance, I spoke with a patient who got lost on the way to work and had to return home. He took this road for some 20 years but his brain couldn’t remember how to get there. Yes, it can get pretty crazy.
Remind yourself and your loved ones often to treat the sick person gently.
Madison Area Lyme Support Group 