Tips for Newbies

gallery-thumbnails.php       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. 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 an 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. Some like to use hydrogen peroxide and/or baking soda or a combination all of these things. 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. 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.  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. 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

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.

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.

1)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.

2)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.

3)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.  Don’t.  Your body needs all the support it can receive as it is in a major war.

4)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).  For starters, read: https://madisonarealymesupportgroup.wordpress.com/2015/06/19/a-word-on-vaccines/ and https://madisonarealymesupportgroup.wordpress.com/2015/07/15/vaccines-continued/ and https://madisonarealymesupportgroup.wordpress.com/2016/02/05/zika-sexually-transmitted/

Every single MSIDS patient I know who got vaccinated had a relapse or worsened.

5)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, and the Madison Lyme Support Group meets one to two times a month where you can vent, complain, and cry.  Trust me, we get it.  Meeting times are posted on this website and by becoming a “follower,” by clicking the blue “follow” button, you will receive an email each time I post. https://madisonarealymesupportgroup.wordpress.com.

https://groups.yahoo.com/neo/groups/Wisconsin-LymeSupport/info.
This is an online group with many MSIDS patients who share information and tips. You can post questions and people will respond.

https://www.facebook.com/pages/Wisconsin-Lyme-Network/408459622540767.

http://wisconsinlymenetwork.org/patients/wisconsin-support-groups/

If there isn’t a support group in your area, start one!  I have been blessed beyond measure by the dear people who attend and have learned more from them than from many doctors.

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 to 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 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 various meds 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 the pharmacist.  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 interactions.  http://www.rxlist.com/drug-interaction-checker.htm

Herxing may be felt within hours 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).  

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 with your doctor.  Sometimes people need to slow treatment down or even stop altogether until their body detoxes properly.

And lastly, be gentle with yourself. Remember your body is in a battle and you will feel it physically. While many will not be able to see this battle going on externally, remind yourself and your loved ones to treat the sick person gently.

Here’s to the beginning of a journey, with many pilgrims walking the same, albeit slightly different path.