Dietary supplements are products that contain one or more dietary ingredients such as vitamins, minerals, herbs or other botanicals, amino acids or other ingredients used to enhance the diet. In the United States, dietary supplements are available in a wide range of product forms, such as tablets, capsules, powders and liquids. (1)
On February 3, 2010, Sen. John McCain (R-Ariz.) announced that he would be introducing legislation that would amend the Dietary Supplement Health and Education Act (DSHEA) to give the U.S. Food and Drug Administration (FDA) additional powers over retailers and suppliers in the dietary supplements industry. (2)
“On February 4, 2010, Senators John McCain and Byron Dorgan introduced S. 3002, the “Dietary Supplement Safety Act.” This legislation would mandate that every dietary supplement would have to go through a brand new process of government review in order to stay on the market… The supposed purpose of the bill is to make dietary supplements “safer,” which is ironic because dietary supplements already have an excellent safety record. It also ignores the fact that the U.S. Food and Drug Administration, the U.S. Federal Trade Commission, and the U.S. Drug Enforcement Administration already have the powers they need to police the market. (2)
Yes, we should have the right to know what we are ingesting. The last time I checked, all my supplements had the ingredients listed right there on the box or bottle. I am confused by Senator McCain’s replies.
In all of the interviews I watched, no one asked about performance enhancing drugs. Yet McCain’s comments revolved around the poor athletes who unknowingly took some sort of supplement that contained what? Steroids? I didn’t think that was legal to start with.
I don’t believe that all supplements are innocent. There are many companies producing ‘supplements’ with false claims and potentially hazardous side effects. There are also those selling supplements that have no effect, good or bad, on anything but bank account of the company owners.
However, performance enhancing drugs/supplements are not the same as the supplements our doctors are suggesting us to take for our health. We do need to fear that our supplements will be taken away and turned into profit for drug companies. They will still sell them to us for sure, with a huge increase in price.
Lyme disease is the #1 vector borne illness in the North America and Europe. In the United States number of reported cases has doubled in last decade and the infection incidence has become larger than HIV. Lyme Disease is estimated to be the second largest infectious disease in the United States, hepatitis C being the first. Worldwide, Lyme Disease is rapidly spreading through Canada, Europe, and Asia. (1)
Often referred to as the great imitator, Lyme disease is rarely properly diagnosed at the onset of infection. The illness is commonly misdiagnosed as; Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS) which is often referred to as “Lou Gehrig’s Disease, Chronic Fatigue Syndrome (CFS), Autism, Attention Deficit Hyperactivity Disorder (ADHD), Lupus, Parkinson’s Disease and many other chronic illness and syndromes. A great many sufferers are told that they are not sick at all and are referred to a psychotherapist or told to, “get over it”.
Undiagnosed and misdiagnosed Lyme disease can lead to severe health problems including Fibromyalgia, Rheumatoid Arthritis (RA), Chronic Fatigue Syndrome (CFS), Bells Plasy, heart rhythm irregularities, cognitive defects, neurological symptoms, memory loss, brain fog, seizures, depression, anxiety, psychosis and more, including death.
It is estimated that there are up to 300,000 new cases of Lyme disease each year in the U.S. alone (2). Yet, only around 30,000 of them will properly diagnosed and reported by the Centers for Disease Control (CDC). The CDC themselves admit that the actual cases of Lyme disease could be up to 10 times higher than those reported.
Most people know that Lyme disease is contracted from the bite of a tick carrying the disease. What many do not know is that is can be passed in vetro to an unborn child and through blood transfusions. There are also reports that the disease may be sexually transmitted.
The Infectious Disease Society of America (IDSA) maintain that Lyme disease is, hard to catch and easy to cure. They insist that the infection is rare, easy to diagnosed and cured with two to four weeks of antibiotics. The IDSA further claims that chronic infection by the Lyme bacterium is rare or nonexistent.
The International Lyme and Associated Diseases Society (ILADS), a group of community-based physicians, argue that Lyme disease is not rare and tick bites often go unnoticed. Testing methods for Lyme disease are inaccurate and the vast majority of medical practitioners do not recognize Lyme and it symptoms.
By the time many Lyme patients are properly diagnosed their health has deteriorated far beyond what the IDSA’s two to four weeks of treatment can fix. Lyme opens the door to other opportunistic infections including additional tick borne illnesses that may have been contracted at the same time as Lyme. Viruses, parasites, candida and other bacterial infections not related to Lyme have taken control of the patients immune system.
Lyme Literate Medical Doctors (LLMDs), who are very hard to come by, tell the newly diagnosed it will be at least two to four years of treatment. There are no guarantees that they will get well though, some are past the point of no return. For many treatment is management, not cure.
This post is copied from the Goodbye Lyme newsletter, written by Greg Lee, owner of Two Frogs Healing Center in Frederick, Maryland. My aunt is a subscriber to his newsletter, and forwarded a few of them to me morning. When I read this article, it was like being hit in the face with the reality of a few good steps I need to take to address my own healing! I was especially pleased to see that Greg authorizes anyone to repost the newsletter in full, so I immediately thought to share it with all of you.
I am excited to subscribe to the newsletter and learn more about Greg’s practice. I appreciated Greg’s mindful, holistic, and empowered approach to the healing process, and the reminder that we are all responsible for how effectively we can rid ourselves of negativity and toxins and bring in positive healing energy. Our habits can limit our healing potential, and reading this article was so right on how those can drain you (like staying up too late searching the internet or pushing yourself to hard – I am guilty, as charged).
I hope you find this article as helpful as I did, and check out Greg’s site and subscribe to his newsletter! His site has a ton of great information and lots of great resources, and the newsletters look very interesting. My aunt also sent me one of his newsletters about using the Ayurverdic herb terminalia chebula to infiltrate the biofilm and kill the bacteria behind cystic fibrosis, and the possibilities of using this herb to great Lyme-related biofilms. More about the herb’s use for treating cystic fibrosis can be found here. Anything that can break up biofilms I’m game for, ‘cuz I’m full of those things.
As a side note, I am thinking of creating stickers or t-shirts or something with the snazzy “Fight Lyme” graphic I created a while back (see above). We can never have too much flashy lime green attention-grabbing Lyme paraphernalia, in my opinion. I’m hoping to get this stuff printed up soon, ESPECIALLY since May is Lyme Awareness month! I’ll be sure to let you all know when that gets rolling.
Imagine you go to the bank to get change for $100 bill. However, they only give you $80 back.
You complain about being short-changed and demand the rest of your money back. However, they refuse and insist on charging you $20 for their exchange fee.
How is being short-changed just like Lyme fatigue?
When Lyme disease fatigue hits hard, you can’t even get out of bed
Many people with Lyme disease suffer from debilitating fatigue. They can’t work, enjoy normal activities, or spend the time they would like with their family. All the normal things that replenish your energy: exercise, a healthy diet, and plenty of sleep may not prevent this debilitating fatigue. These people end up being short changed over and over by their disease.
Caffeine, sugar, or uppers only make Lyme fatigue worse
Many of these people try drinking more caffeine to boost their energy. Unfortunately, this ends up burning up their energy faster and creating more fatigue. Other people will try sugar. Most sweeteners produce a population explosion of the Lyme bacteria which leads to even more fatigue. These people may resort to using drugs which give a temporary boost of energy, however these last a short while until the person burns out their energy reserves.
What is the cause of this debilitating fatigue?
Poor sleep, too many toxins, and an overwhelmed immune system zap your precious energy stores
The Lyme infection eats up nutrients before they reach your cells. So your cells end up being starved for energy. After eating your cell’s nutrients, these bacteria produce waste toxins which poison your system. These toxins can leave you feeling extremely fatigued or in severe pain.
These poisons force your immune system to work hard at cleaning them out of your body. Your immune system is further taxed by trying to kill off these bacteria as they multiply. Having your cells starved, feeling slowly poisoned, and being in pain can prevent you from sleeping deeply.
What can help you to get back your energy from Lyme fatigue?
Here are three strategies for stopping the effects of Lyme fatigue and replenishing your energy
Using these strategies together helps you to reverse the impact of Lyme fatigue.
First, find and neutralize the causes of Lyme fatigue
Since the bacteria eat up nutrients that normally go to your cells, one strategy for stopping fatigue is to stop eating foods that feed the bacteria. These bacteria like sugars, so eliminating sweetened foods, most carbohydrates, and dairy can start to deprive the Lyme of it’s food. Eliminating these foods helps to limit how fast they multiply and can help to decrease their population. Taking anti-Lyme drugs or anti-Lyme herbal remedies help to kill off the Lyme bacteria. Reduced numbers of bacteria eat less and leave more food and energy for your cells. Adding the right foods to your diet can stop other causes of fatigue.
Another way to neutralize Lyme fatigue is to clean out the toxins that are in your body
There are foods like leafy greens, seaweeds, and vinegar which help to purge energy draining toxins. Seaweed especially has vital nutrients that help to replenish to energy and strengthen your immune system. There are many herbs like gardenia, raw garlic, lycii berry, and honeysuckle that help to neutralize toxins and protect your vital organs. Having a stronger immune system and less toxins in your body, helps you to feel more energized.
A second strategy is to change your energy draining behaviors
Many people with Lyme fatigue have a tendency to give to others before they give to themselves. By inhibiting behaviors like giving to others when you barely have any energy, helps to stop energy depletion. Other examples of energy draining behaviors are: pushing yourself beyond your limits, staying up too late searching the internet, or taking in other people’s judgments or negativity.
Doing activities within your limits, having a healthy lifestyle, and setting a healthy boundary with negative people can reduce energy draining situations in your life. As a person learns to inhibit these behaviors, this can help with learning to receive more energy.
The third strategy is to receive more energy
Most people with Lyme fatigue are great at giving. However, they often don’t know how to receive or they refuse to get support. Inhibiting behaviors that block receiving helps open the way for learning to replenish your energy. A simple tool that has helped tremendously with receiving more energy is called remembrance. This is a simple tool where the person uses a name or phrase that describes their highest source of support, life energy, or healing.
The tool is used like this: as the person feels their fatigue, they repeat this name or phrase and they open and feel what happens. Sometimes it is more effective to express the sound of the fatigue first and then repeat the name or phrase. Many clients have had dramatic increases in their energy levels when taking only five minutes each day to receive using this tool. It has also helped to reduce or eliminate other Lyme symptoms like pain, brain fog, and inflammation.
Using these three strategies, you can release your Lyme fatigue and revitalize your energy
The Lyme bacteria love to drain your energy by eating your nutrients and putting their toxins in your body. You can reverse the effects of Lyme fatigue by using a combination of three simple strategies.
First, starve the bacteria and neutralize their toxins by changing your diet. Second, become aware of and inhibit your energy draining behaviors. And third, receive more energy directly from your highest source of healing support. This combination will help you to stop the Lyme bacteria from short changing your energy. These strategies can also help you to replenish much more quickly.
- Greg
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Getting Rid of Lyme Disease Pain, Fatigue, and Mental Fog
First Monday of the month
Free evening lecture on healing Lyme disease
at Two Frogs in Frederick, Maryland
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“Unless we put medical freedom into the Constitution, the time will come when medicine will organize into an undercover dictatorship to restrict the art of healing to one class of Men and deny equal privileges to others; the Constitution of the Republic should make a special privilege for medical freedoms as well as religious freedom.”
— Benjamin Rush, M.D. (circa 1787)
Benjamin Rush (1745-1813) was a colonial physician known as the “Father of American Medicine.” He signed the Declaration of Independence, served as the Surgeon General of the Continental Army, and opened the first free medical clinic at the Pennsylvania Hospital. (1)
Do you think old Ben Rush is sitting somewhere looking down on us with George Washington and Thomas Jefferson saying, “I told you so.”?
Medical care in our country is not a right nor a privilege. It is big business for profit. Insurance companies, pharmaceutical companies, doctors, researchers and even universities are all looking for their piece of the pie no matter the cost.
Those who stand in the way of this multi-billion dollar industry run the risk of being persecuted.
Like Dr. Charles Ray Jones, the physician in Connecticut who is accused of what? Making kids well? Don’t they normally award people for saving lives? Apparently if in doing it big business feels threatened it is not OK, better those kids suffer and die. Right and wrong don’t matter as much lining pockets.
Bills are currently being passed that will make it easier for doctors to treat Lyme disease with long-term antibiotics. Some states, like California and New Jersey already have protections in place that allow doctors to use long-term antibiotics without fear of losing their medical license (4). This is a big step in the right direction for effective Lyme treatment. For some of us long-term antibiotics are the only way we are going to get better. Standing in the way of their prescription should be considered cruel and unusual punishment. The drug companies should be happy, those antibiotics are EXPENSIVE! It must be the insurance companies that are fearing this move.
Others of us, even with these changes, are still being left out to dry. We aren’t using antibiotics at all. For some of us this is a personal choice, others of us failed on antibiotics. Sometimes man’s wonder drugs cause more harm than good. Many of us are left with alternative or natural treatments as our only option. This is definitely not profitable for the drug companies and an excuse for the insurance companies to ignore us.
Quinine has been used to treat malaria since the 1600’s. It remained the antimalarial drug of choice until the 1940s, when other drugs took over. Since then, many effective antimalarials have been introduced (3). Mepron the foul yellow synthetic poison is a much more profitable and therefore accepted treatment option. It might be covered at least partially by your insurance. At up to $1300.00 for a three week supply, you would hope they would help! Mine did, they paid $1.50 per bottle. Thank you big pharmaceutical business for making me poor. Both mepron and quinine are commonly used for the treatment of babesia in Lyme patients. Quinine Bark retails at around $14.00 for 100 capsules.
Damn hippies and their natural medicines. Our new fangled antibiotics are far more effective to anything in nature. Why, Man made them himself with his superior intelligence! He stole the idea from nature and patented it, the big cost of research and development should not be wasted on a medicine anyone can sell. After all, it is Man’s God given right to profit from Mother Nature’s gifts, brilliant!
I do believe that many of the advancements in modern medicine are, without a doubt, useful, necessary and in many cases superior to the primitive medicine of past centuries. That doesn’t mean that it is all better. Or even all good for that matter.
Some religions believe that God has provided all we need in Nature. Others believe that the hand of God has guided man to create these medical advancements, antibiotics and procedures. Neither is wrong.
I have a hard time though imagining any God giving high 5’s to the corporate insurance bigwigs as they turn their backs on those in need. When they get their big bonus as the result of weaseling out of covering the treatments people need to get well, I don’t imagine God joining them on their private jet as they whisk off to their 2nd home in the Hamptons.
Would any God approve of harassing doctors and charging them with crimes for saving children’s lives? No, that man is not God, he just thinks he is. In the case of Dr Jones these false idols assume the form of the Connecticut Medical Examining Board (CMEB) and the Connecticut Department of Health (CT. DPH). They have imposed a $10,000 fine and a four-year license probation during which time his practice will be monitored. Luckily they have not yet succeeded in forcing him to surrender his medical license.
Aside form the charges they have placed against Dr Jones, the CMEB, are also attempting to introduce a restrictive ‘four part standard of care for Lyme disease’. Jones warns us that this would set a very dangerous precedent that could be used against other doctors and shut down the treatment of chronic Lyme disease. (2)
Benjamin Rush was right. Medicine has officially organized into an undercover dictatorship that restricts the art of healing to one class of men and denies equal privileges to others.
Dr Jones’ legal battle is far from over. He continues to fight not only for his patients but for the rights of all Lyme patients. If you would like to make a donation to help Dr Jones you can do so by following this link t0 THE DR. CHARLES RAY JONES DEFENSE FUND
Lymie in the kitchen, look out! Cooking for my family at Christmastime.
When you don’t feel well the last thing you want to do is cook, right? The trick is learning how to make the most of your time in the kitchen and get the most out of your meals. I have been fortunate to never have been sick enough to be totally unable to cook for myself, but definitely have periods where working in the kitchen is challenging and exhausting. With all my additional food allergies and intolerances, I already have a lot of work to do in the kitchen, so when I’m having bad days, it can be hard. During those times, I find that I rely on a handful of basic standby meals and techniques to make it through.
Here’s a few suggestions:
Make big batches and freeze the leftovers. When you’re having a good day or when you have help from a friend, make big batches. It is more work on the front end, but ultimately, it leaves you with less work.. You can eat off your big batch all week or freeze the leftovers for later. Basics like cooked rice, quinoa, millet, or any kind of cooked beans can last for 5-7 days in the fridge if tightly sealed, and they can freeze very well for months. Prepared foods like soups, lasagna (with brown rice lasagna noodles!), casseroles, burgers and meatballs, and homemade breads and muffins freeze amazingly well. I use a FoodSaver to vacuum package all my foods for the freezer. Then when I am super busy or having a bad day and can’t deal with being in the kitchen, I can just reach in the freezer and get something wholesome!
Get friendly with quick to prepare whole foods.
Split mung beans and lentils cook quick very quickly and don’t require pre-soaking.
Whole grains like quinoa, millet, and buckwheat cook in under 20 minutes if whole grains are soaked 6-10 hours in water, rinsed, then cooked. Make big pots of a couple different grains at the start of the week and eat off them all week in salads, soups, or just plain.
Winter squash are nutritious and so easy to bake – just cut in half, place cut side up in a pan with 1″ of water, cover with foil, and bake at 400* for 45-60 minutes, until tender. Easy.
Sweet potatoes and regular potatoes can be baked whole in the oven or microwave, and stored in the fridge for 3-4 days.
Most vegetables can be eaten raw if you don’t want to deal with cooking them. Make a meal of bean dip, raw vegetables, and miso soup.
Steam vegetables. Steamed vegetables take only minutes to prepare, are easy to digest, and can be eaten any time of day with any kind of other foods. You can steam vegetables on the stovetop with a steaming basket in a pot, or you can purchase electric vegetable steamer appliances if you don’t trust yourself (and your Lyme brain) with open flame. My rice cooker even has a vegetable steaming tray that I sometimes use if I don’t feel like using the stovetop.
Make salads and get comfortable with eating raw. The easiest food in the book. Bag of pre-washed baby greens, some kind of protein (beans, meat, fish, nuts), and a handful of other vegetables, or a scoop of quinoa or millet. Add some salad dressing or a little oil and vinegar, lemon juice, or sprinkle of vitamin C crystals, and you’re done! Under 5 minutes. If your body tolerates raw vegetables well, learn to love eating raw veggies with your meals – less prep work, and good for you too!
Make miso soup. If you tolerate beans, eat miso. Most miso is made of soy, but South River Miso also makes soy-free gluten-free varieties from chickpeas and azuki beans. As a soy free person, I love this stuff. Throw some fresh or frozen vegetables in a pot with 1 cup of water, heat until vegetables are cooked through. Add cooked fish or other meat, beans, or other things like sea vegetables or cooked rice. When everything is warm, remove from heat, and stir in miso paste. Then eat! Easy, nourishing, and so so fast. Sometimes I just make a cup of miso for a nourishing mid-afternoon snack, or drink in the morning instead of coffee!
Make green smoothies.This involves little to no prep time and gives you amazing nutrition in a very easy-to-digest way. I make green smoothies for any meal of the day, adding whatever raw or cooked vegetables I have on had, and anything else from beans to leftover grains, to coconut milk to protein powders or random superfoods. I often make savory smoothies, but if you can tolerate fruit, add fresh or frozen fruit for a sweet twist. If you can’t tolerate a lot of sugar, things like lemon and lime juice, fresh ginger, cranberries, and vitamin C crystals add bite without the sugar, and fresh herbs like parsley and mint add great flavor. Smoothies are the ultimate no-preparation meal. Hey, I’ll throw almost anything in a blender.
Don’t have energy to peel, chop, and dice fresh vegetables? No problem! Many grocery stores sell packages of cleaned, chopped, and peeled basic vegetables in the produce or deli section. Look in the freezer section and you’re bound to find a wide variety of vegetables, from cooked squash to spinach to peas to cauliflower. While fresh, whole veggies are always best, these pre-cut and frozen options are AWESOME if you need to give yourself a break in the kitchen.
Eat meat? Buy rotisserie chickens. If you can find a grocery store that sells free-range, hormone-free, no antiobiotic rotisserie chickens, even better. Rotisserie chickens are a lifesaver, and money well-spent – so many meals, and so so so so good!
Choose quality pre-made pantry items. It is great to have a well-stocked pantry of high-quality pre-made foods to choose from when you don’t want to cook! Choose minimally processed frozen and canned goods, like…
Eden Foods canned beans, beans & rice, and (BPA free!)
Muir Glen canned tomatoes
Easy to cook grain products: quinoa flakes, cream of rice, kasha/cream of buckwheat, gf oatmeal, whole grain millet, quinoa, buckwheat, amaranth
Trader Joe’s stuff – they have everything! Soup, broth, frozen stuff, cereal, etc and a lot of it is all natural, organic, and minimally processed.
Whole Foods 365 Brand items – minimally processed, not too expensive
Lundberg Family farms rice cakes
Nut and seed butters (natural style, unsweetened, no additives). If you have nut allergies, try Sunbutter, pumpkin seed butter, sesame tahini, or hempseed butter.
Canned tuna, salmon, and sardines
High quality protein powders. Protein powders are kind of weird, and in theory, I don’t like the über-processed nature of them. However, I occasionally use UltraClear Plus by Metagenix, a high quality medical food meal replacement protein powder. Metagenix makes a number of different medical food formulations; this one was suggested by my naturopath and I’ve had good luck with it over the last year. It is formulated for people that suffer from chronic fatigue and assists in liver support and detox. I find it to be a really useful addition to my diet, especially when I’m traveling, needing a detox day, or am on the go and know I’ll need a snack. I just put a scoop or two into a small glass pint jar and throw it in my purse – then when I want it, add water, shake, and drink. Two scoops has 160 calories, 20 grams carbs, and 15 grams of protein, and loads of vitamins and minerals. If I don’t feel like cooking, I’ll often throw a scoop of this into a green smoothie for a quick meal, and get complete nutrition in an instant. Easy.
Get a VitaMix. I think a Vita-Mix is the best kitchen appliance you can ever buy! I use my Vita-Mix multiple times a day for everything, from chopping vegetables to making smoothies, sauces, vegetable purees, bean dips and hummus, and soups, to grinding my own flours and making my own fresh nut and seed butters. It makes working in the kitchen so easy and so fast. I am addicted to my VitaMix. My favorite thing? Making fresh, hot, blended soups in less than 10 minutes – the blender can actually HEAT food because it is so powerful, and you hardly have to chop or cut up anything.
Interested in buying a Vita-Mix? I can get you free shipping! Click this link for great specials – if you purchase a VitaMix through that link or use my Associate Code (06-004943) at checkout, you can get free shipping, a savings of $25! Seriously!
Get a crock pot. You can’t start fires, you don’t have to keep checking on it, and you can just throw a bunch of stuff in the pot and forget about it all day. Easy. If you aren’t good at coming up with your own recipes, there are lots of great slow cooker cookbooks out there. I would cry without my slow cooker. Sorry, I can’t save you any money on a crock pot.
Get a rice cooker. Perfect rice every time with very little effort. Enough said. But I’ll say more. You can also cook quinoa, millet, and other grains, and some rice cookers have steamer baskets. I’ve made soup in a rice cooker before. Rice cookers are amazing. But no, I can’t save you money on that either.
Use a kitchen timer. Give your Lyme brain a break. Set a timer. Your food, pots and pans, and smoke detector will thank you for it.
Don’t cook at all, and hit up the salad bar or deli. Go to Whole Foods, a local salad place or deli, or your local grocery store or co-op and make a big salad from their salad bar and deli. So easy, so good.
Don’t cook at all, and order take-out. In a pinch, it works. Depending on where you live, your options may be kind of terrible, but if you live in a larger metropolitan area, there are lots of awesome – and healthy – foods available for delivery! Have dietary restrictions? Talk to the manager of your favorite local delivery place and tell them about your needs – if they know you’ll order a lot from them, they might be willing to do special orders for you.
Don’t cook at all, and ask for help. There is nothing wrong with asking for help if you need it. You might be too sick to do any kind of cooking for yourself, and you might have to rely on others. If this is what you need, don’t feel bad about it – just do what you need to do to nourish yourself. Here are a few ideas!
Ask neighbors, friends, or family members to prepare meals for you or bring you an extra bowl of whatever they are making, or ask if you can go over to their house for dinner a couple nights a week. If you can get a few people to help you, each person may only need to help out once or twice a week! Offer to pay them a weekly amount for their help in exchange, or see if there is something you can do to barter!
Ask friends to grocery shop for you and bring you high-quality pre-made deli items from Whole Foods, your local food co-op, or your local natural deli.
Put an ad for help on Craigslist. Make your expectations and needs very clear and be smart about meeting and interviewing them – be safe and use common sense. There are lots of great people out there that might be willing to help grocery shop for you, cook, and do other household chores in exchange for some extra money in their pocket.
Look into local meal delivery programs. There are many non-profit organizations that cater to chronically ill people; with a letter from your doctor or case worker you may qualify.
Reach out to your local Lyme Disease support group, and see if anyone has suggestions for meal assistance programs, or see if anyone has a healthy friend who is willing to help out Lymies in need. There is no harm in reaching out and asking the question!
Throw yourself a cooking party! Ask friends to come over and take over your kitchen. Assign each friend to come up with something and ask them to bring all the ingredients they need to make it. They can cook it in your kitchen, and everyone can hang out and watch a movie while stuff cooks. You pay them back for whatever they buy, and you can grace them with your presence while they cook for you. Make big batches and freeze leftovers. It is like your own cooking crew, and it will be both fun and useful!
I hope those ideas are helpful. How do you cook when you’re sick? Share your suggestions in the comments section!
.My name is Luna – I live by the second tree
I live round the corner from you
Guess you ought to watch out for me!
.
..
I am a very small larva tick, the size of a freckle and my name is Luna. I come from a very large family of 2,000 brothers and sisters, born under a leaf in the forest. We all scattered in different directions as we hatched out, to avoid being eaten by birds so I do feel quite lonely. I am very lucky though, I have an older brother called Dips*.
Despite his name he is very clever and tells me lots of useful things. One day I was very sad as I couldn’t find my mother. Dips sat me down next to him on a twig and told me gently that my mother died after giving birth to us. To protect us from ants and other insects she made sure our eggs were coated with acid, so we were all safe. It made me feel better knowing that she was looking out for us – thanks Mum!
The other day I saw an insect. It had six legs like me (Dips said only older ticks can have eight legs and I’m still a baby). I watched the insect with great interest as it sniffed around the plants and then I heard a buzzing sound. It started to hover in the air and then flitted off up to the sky. I was dead impressed – wow, let me try! I crawled to the end of a blade of glass, made a buzzing noise with my mouth and leapt in the air – wagh that hurt. I fell before I hit the ground and bent my mandible!**
Dips came running to my side. He explained that I will never have wings. At my young age of being a larva I only have six legs but that doesn’t make me an insect. In fact I’m related to the spider family and they don’t fly. I wish he’d told me that before!
A few days later my mandible had straightened again. I said to my brother that I started to feel hungry. I have not fed since being hatched. Dips told me not to worry – a larva tick can go for five months without a meal. At my young age I have to practice crawling up blades of grass and adopt a questing position. Questing – what is that I asked? He’s so clever I thought. Well, Dips sat me on a branch in the shade, to prevent me dehydrating, while we chatted. Questing he says is where the tick climbs up to the top of a blade of grass or undergrowth. Here they balance waiting for an animal to pass by. That animal is then the host. It takes practice to get the questing position just right, he said. One gust of wind and you’re over the edge and have to start again. Sometimes the animal will be an inch too far out of the way – without wings we are unable to fly and we don’t have the powerful jumping abilities of fleas so they’re just beyond our reach. That’s why it takes practice to get it right.
I told my brother that I will practice hard – I don’t want to wait 5 months before getting some food! I asked my brother what happened to all my brothers and sisters that were born. He said, Luna you are too young to know. That will be told later. Meanwhile stay close to me and practice your climbing skills. And don’t forget, no more flying! I giggled and said, OK, I’ll try!
*Unfortunately Luna hasn’t worked out yet that Dips isn’t related to her. She looks up to him as an older brother – bless! **Ticks don’t have mandibles but a muscular palp – Luna still has much to learn!
When I tell someone about my illness, I call it Lyme disease. However, borrelia burgdorferi is only one small part of that illness. My definition of Lyme disease, is something much bigger. Lyme, in itself, was the catalyst that opened the door and invited the rest of my disease to come out to play.
For me Lyme is the large branching tree of everything I have. Each separate infection/disease is only one branch; borrelia burgdorferi, bartonella, erhlichia, babesia, HHV6, CMV, EBV, parasites, amoebas, thyroid imbalance, hormonal imbalance, candida, heavy metals, food sensitivities, the list goes on. I don’t differentiate, I call it all Lyme. The reality is though, it is not all Lyme. Lyme is really only borrelia burgdorferi.
I often wonder how much confusion this causes. I have seen many people write online about how angry they are that their doctor has told them they are now suffering from X not Lyme. They are angry because they are still sick. Of course they are still sick. They most likely had more than just Lyme, borrelia burgdorferi, to start with.
When the laundry list of diseases is as long as most of ours are, getting rid of one infection, even if it is borrelia burgdorferi, is not going to make us well. It is only one step in this long process.
Even the IDSA says that one of the reasons that some of us remain symptomatic is, They had Lyme disease and another infection simultaneously and were only treated for Lyme disease. Each co-infection is, in fact, a different infection.
Putting aside all the monitory interests involved with the IDSA and Lyme disease, are they in part arguing semantics? Or, are we for that matter?
While I believe the IDSA guidelines to be flawed and most definitely not in the interest of the ill, I have to admit that Lyme would not be nearly as hard to treat if it was only borrelia burgdorferi.
I suppose I would even go so far as to say that if you saw the right doctor, and if you were diagnosed right away, and if you only had borrelia burgdorferi, then Lyme would be easy to diagnose and easy to treat with a short course of antibiotics. That is a few too many ifs for me. It may be the exception but it is most definitely not the rule.
I don’t believe that the literal Lyme disease, borrelia burgdorferi, is the same disease that the majority of us are talking about when we say Lyme. We have it yes, but it is only the trunk not the whole tree of our illness.
If you had noticed the small sapling growing, unwantedly, in your garden early on, you may have be able to simply pluck it out by hand. Now though, with the size of the tree and the span of it’s branches, you are very likely going to need a tree trimmer and a bulldozer to get to the root of the problem.
I am pretty sure we can all agree that the disease we have is called Lyme disease. Although, there are those of us who think it would be better to refer to it as ‘tick borne illness/es’. Well, come to think of it, if you ask the IDSA it isn’t Lyme that some of us are suffering from at all. Post Lyme Syndrome? Sometimes I refer to it as Lyme and Co.
The reality is we have a lot more than just the literal Lyme, borrelia burgdorferi, waging war in our bodies. Whatever you want to call it, there is no s at the end. I know for sure that it is Lyme, not Lymes disease no matter how many people add that s.
So what do you call the people who have this disease? Lyme disease patients? Lyme sufferers? Lymies? Lyme Warriors? I think this one might be personal. Maybe it depends on how you feel about your illness.
Personally, as you probably noticed, I use Lymies. It is not so much that I like the term. I just don’t like to think of myself as a sufferer of a patient. I know that I am, but I choose not to label myself that way.
Today I had a phone consult with my LLMD. Like many Lymies, I see a doctor that is far away from where I live. In my case, my LLMD is in New York City, and I am here in Minneapolis. I’ve been looking forward to this appointment for weeks, yearning for a connection with my doctor and answers to my questions. It is hard to be so far away.
Distance makes the heart grow fonder, I suppose.
Thankfully, it was a very reassuring consult, the first follow up since my initial appointment with Dr. R back in December. I traveled to New York to see him, and it was a very significant moment in my life for a couple reasons, like I was at a turning point between my past and my future. In a strange twist of fate, I had my grad phone school interview with the Oregon College of Oriental Medicine the first full day of my trip, and my appointment with Dr. R the next day. Lyme and grad school exist in counterpoint in my life right now. I was finalizing my application the same week I got my Lyme diagnosis back in November 2009, about 3 1/2 months ago. The school received my application the same day I had my first Lyme appointment with my lyme literate naturopath. Then I had my phone interview while in New York to see Dr. R for the first time. My journey with what I now know is Lyme is what ultimately drove me to pursue education in acupuncture and Oriental medicine; my illness and my future are inextricably bound. It was amazing to be completing the necessary stages to move on the next phase of life all within 24 hours of each other; I interviewed with the school of my dreams, and met with the doctor that will help me get strong enough to actually achieve them. Through being sick I have found a passion for natural healing, and I want to use this experience to empower, support, and educate others in their own healing process. However, before I can heal others, I need to heal myself. It is a lesson in patience, in learning my own abilities and weaknesses, and in understanding realistic limitations.
Since my appointment and that interview, I’ve experienced a lot. I started antibiotic therapy. I received my acceptance letter. I started Herxing. I have had higher medical bills to pay. I sent in my deposit for school. I have become an expert in filing insurance claims. I have had to realistically assess my abilities and limitations. I have had to learn to be patient. I have felt alone. I have felt supported. I have felt defeated. I have felt driven. I have felt dead inside. I have felt wildly passionate. I decided I needed to defer enrollment to 2011 in order to deal with all this Lyme business. I’ve been afraid and confused and curious. I’ve had weird symptoms cycling through my body that I don’t understand. I’ve wondered “What is going on here?” and “What am I supposed to feel?” and “Is this normal?” and “Is this even working?”
So many questions. These questions are easier for me to swallow than the questions of my past, however, when I didn’t understand why I was sick. Now I know why I’m sick, and I know I’m doing something about it.
Today’s phone consult with Dr. R was incredibly reassuring. He very pleased at my progress thus far, and we talked about my symptoms and blood work and what he is concerned about and what he isn’t. I asked him lots of questions. He told me lots of answers. When I told him how I was struggling with knowing what I’m supposed to be feeling, he told me the following analogy. I found it incredibly poignant. I’m paraphrasing here, and throwing in a couple added flourishes, but this is the general idea.
It’s kind of like riding a train. You know you’re going to a destination, and the conductor says he knows how to get you there safely. But you’re looking out the window, and you see things going by, and you have no idea where you are or what you’re seeing. Sometimes things move by fast sometimes they move by slowly, but everything is a blur. The conductor says he knows what he’s doing, but you feel like you don’t have any control. You can either worry about it, or you can trust the conductor and just and relax. Either way, you’re going to the destination. But the ride will be much better if you sit back, be patient, and know you’ll get there.
Uh huh. One needn’t read too deeply to understand what that means.
Dr. R told me the hardest thing for all his Lyme patients is just learning to sit back, relax, and trust in the treatment. Interestingly, I was told this same exact message by my acupuncturist about 2 months ago, and by my therapist about a month ago. This is a message that I am supposed to hear right now, apparently.
I have the tendency to want to fix things, to want to do something more, whether it be taking another supplement, seeking another form of alternative healthcare, or learning another home detox method, or whatever. I want to feel like I have a plan and agenda and a part in my own healing process and feel like I am doing something to fix it. I think anyone who has experienced chronic illness and has taken their healthcare management into their own hands has this same urge. We need it, our survival has depended on it; for some of us, that urge has allowed us to save our own lives. But when do we finally just let ourselves sit back, have faith, and realize we are doing all we can?
I think for me, that time is now.
Dr. R helped remind me that I am doing what I can. I am being proactive with my treatment. I am healing with each day. And while this road may be long, I am on the train. It is time to sit back and enjoy the ride, as they say, whether it be through motion sickness, complimentary beverage service, or a nice sunset out the train window. Either way, at least I’m heading where I need to go, and I have good conductors and strong and sturdy rails. I don’t need to get myself all worked up and stressed out and worried. I heard this quote in meditation class a couple weeks ago that touches on this same idea: “True transformation of the heart cannot happen when there is an agenda.” What does that mean? I interpret it to mean that you can’t force true change, but you must allow it to happen naturally and with grace.
Take a moment and think about your healing plan. Where can you allow yourself to relax and accept? Where can you allow yourself moments of grace in your treatment process? Where can you allow yourself to have faith in the tools you have given yourself, and know that you are on a healing path?
Hi guys, so I’m crazy studying right now for the Bar Exam which is in a week. I can’t believe I’m able to retain information. I thought this day would never come! I really thought I would have to choose a new profession. I remember telling people at one point after I took the neuropsychology test (the one where It said my IQ was well below 90) that I would have to work at McDonalds with Lyme. Heck, I probably would have been fired for not being able to use the cash register or being able to get out of bed. What’s 2 +2? Want fries with that?
My IQ at that point, because of the Lyme, qualified me for two professions according to IQ Comparison Site. A janitor or a plumber. Great. Two professions that I would suck at.
But guys there is hope! Yesterday I took a mock Bar exam and basically kicked it’s butt! So I’m super excited. My brain is back!!! Oh by the way, I know lots of Lymies take vitamin B shots. I’ve been taking “Energy B-Complex” by Rainbow Light, for energy to study and mental focus and it’s been great. Highly recommended if you can’t get your hands on a vitamin B Shots. Vitamin B is the number one vitamin that your body needs on a daily basis and constantly runs out of. So if you are exhausted, please ask your doctor because this might be so helpful for you.
Last night, I went out with some friends downtown and sang Karaoke on St Marks Street in the Village. Sitting there singing with my friends I was so happy to be a part of the “world” again. I took my microphone and sang my heart out to the best of the best 80’s songs– Toto, Tears for Fears, Madonna, Billy Joel. It was great. I feel like I’ve lost so many years and now have to be “caught up” with the fact its 2010. I have dreamed of this for so long, especially being able to take the bar exam.
It’s a little strange actually not having De-realization or being ill anymore. It has been my identity for so long that I forgot who the “real Heather” is. The Heather that used to laugh, have fun on vacations, sing, dance, paint, draw and do adventurous things. There is a part of me that is so used to being indoors. I think I mentioned this before but I feel a little bit like I am in the movie Shawshank Redemption (you know where the guy gets out of prison and doesn’t know what to do with his new found freedom).
There were lots of movies that I contributed to my major Lyme days. Two that actually come to my mind are Groundhogs Day (my daily life with Lyme) and Bourne Identity (displaying the memory loss). Do you guys have any movies that you contribute to Lyme? Please share! I was always interested in hearing this.
All my friends have gone on to work at prestigious law firms these past few years. They were able to pay off their high law school loans. It has been so scary for me these years with all the debt from school and treating Lyme. In the end, with all the money I spent on everything I know that there is no greater wealth than your health. I’ve dreamed of this for so long and I hope that your dreams come true too.
There are two types of Lymies. Well there are lots of types of Lymies. We are all unique just like everyone else, right. For this topic though, there are two types. Actually I think these two types most likely apply to many chronic illnesses.
The, It’s about bleeping time! vs. the, Are you bleeping kidding me?
It’s About Bleeping Time!-
These are the people who were undiagnosed and/or misdiagnosed for years. Things may have begun falling apart slowly, maybe they didn’t even notice at first. Or there may have been a trigger that started the demise.
The key thing here is that these people are so sick that by the time they get to the doctor who properly diagnoses them, they don’t care what it is. In many cases the doctor could tell them they were going to die in six months time, and they would simply accept that.
They have already given up on ever being ‘normal’ again. They have lost huge parts of their lives by this time, their identity, self-esteem, friends, job, dreams. Many of them are lost and alone, sometimes for years. Support is hard to come by, when the doctor says you’re fine.
To these people the diagnosis is salvation. Finally someone listened. Finally there is a valid reason for their pain. Finally they know that they are not crazy. A huge weight lifts and things start to make sense.
They are angry. Angry that the medical system failed them. Angry that so many doctors missed the obvious signs. Angry at what life could have been like if they’d been diagnosed sooner. Angry, but mostly relieved. They can now start doing something to regain their lives.
Are You Bleeping Kidding Me?-
These people were completely healthy one day and bedridden the next. They were broad-sided out of the blue and their lives came crashing down at their feet.
When they arrived at their doctor’s office they still had hope that this would all be worked out quickly. They believed that life would return to normal in a short amount of time. “Give me my prescription and send me on my way.”
Many of these people have harbored the disease for years without symptoms. They had no idea that “something” was silently eating away at their immune system.
When they get the diagnosis of chronic illness, they are devastated. They didn’t see this coming. They were not prepared for their life to change. They had plans, and this doesn’t fit in.
They are shocked and scared and probably angry. “This can’t be possibly be happening to me.”
I tend to think it is harder for these people. Maybe that is just because I am a member of the other camp. Surely they would not trade me the peace I received from my diagnosis, if it meant they had to also take the 10 years of undiagnosed and misunderstood suffering.
The reality is, none of us have it easy. We all got sick and we all have to learn to deal with that as a fact. Our lives have been forever changed because of our illness.
Whether that change is for the better or for the worse, I truly believe it is up to each of us as an individual.
As you know I am suffering from Lyme disease. Lyme is a very misunderstood and overlooked illness. This is pretty scary seeing as they estimate there were up to 422,000 new cases of Lyme contracted in 2008, only 35,198 were actually reported by the CDC (centers for disease control).
You can get Lyme in any state and even any country, aside from Antarctica. It is the fastest growing infectious disease in North America. There are more new cases of Lyme disease each year than there are of HIV, West Nile, Swine Flu, and Avian Flu combined.
I have started a project to create a Nationwide Awareness Campaign for Lyme disease. Zack, my brother, is going to help me make a PSA! We are very excited and so is the Lyme community I have become a part of.
We need help to make this happen. We need donations for the production costs of the project. All donations are kept track of on my website LYMENAIDE.COM you will be acknowledged there too. Please help us spread awareness about this devastating disease that has pretty much stolen my life.
Tax deductible donations can be made to the Paint May Lyme Green campaign through causes. Causes is a facebook application. You do not have to have a facebook account to donate using causes. Causes accepts PayPal and credit card payments. Follow this link to make a- TAX DEDUCTIBLE DONATION THROUGH CAUSES. Your tax deductible receipt will show that you made a donation to P.A.N.D.O.R.A. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy). This is the non-profit that has made Paint May Lyme Green and associated cause. It is because of their gernerosity that we are able to have a tax deductible option for our project.
Direct donations can be made through PayPal by following this link- MAKE A DONATION THROUGH PAYPAL this option is not tax deductible.
I also made a short video about my Lyme story for the campaign. You can watch it on YouTube. Here is the link- ASHLEY’S STORY ON YOUTUBE
.When things go wrong, as they sometimes will,
When the road you’re trudging seems all up hill,
When the funds are low, and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but don’t you quit.
Life is queer with it’s twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out.
Don’t give up though the pace seems slow,
You may succeed with another blow.
Success is failure turned inside out,
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you’re hardest hit,
It’s when things seem worse,
That you must not quit.
In this video I was interviewed by a woman that I met at a Day Spa in New York.
I met her at my lowest point during my Lyme battle. I remember sitting in the chair crying in the waiting room at the Day Spa asking to see the owner inquiring about Colonics. My doctors had all failed me and I just didn’t know what to do. She came up to me, gave me a hug, told me she was battling Lyme disease herself and that everything was going to be okay and started introducing me to ozone. She does a lot of work with doctors in the New York area and Ozone.
When I saw her recently she was amazed at how much better I am doing. I was shocked when she said she wanted to interview me. But, I nervously I agreed to do it. (My dog wanted in on the video too):-)
This is part 2 of a 5 part series. You can find the other 4 videos by following the links at the bottom of this post.
The Post Traumatic effects that I have from Lyme are devastating. Getting over Lyme was the hardest thing I’ve ever done, I’m still on my way and I want you to know that even though I try to smile these days and in this video. Those memories of 6 months ago, those dark times, were the scariest times of my life.
I questioned how it was so easy for some and harder for others. I remember getting so angry every time I heard someone recovering so quickly from this disease. I think there were a lot of factors.
Knowledge (good doctors, good protocols, following those that have good success or sticking to the winners)
Money
Support.
I want to give people hope and hopefully save a life.People shouldn’t have to die or contemplate ending their life because doctors don’t understand, they are broke and they have next to no support. I couldn’t afford an LLMD at this point and sold off lots of stuff that I had. Even without the help of a doctor, there is still hope and if your antibiotic fails please, please don’t give up. You’re not alone. Write down all the things that you have to live for, post it somewhere and don’t stop until you find the answer.
God bless,
Heather
This is part 2 of the 5 part series Heather did with . To see the rest of the videos follow the links listed below.
I’m sure I contracted Lyme sometime in my childhood. It waited there, hiding in my body until my early 20s when it attacked. Somehow during my journey into Lyme I managed to, ‘keep it all together’. It was a façade, a good one. Not only did I have everyone around me fooled, I had pulled the wool over my own eyes too. It felt much safer to hide under the cover of ignorance than to face… well, whatever it was that I needed to face.
I was diagnosed with Lyme in October 2008, I was 31 years old. Unfortunately I had one of those common doctors, you know the ones who tell you it is no big deal. It wasn’t until April 2009 that with the help of a wonderful doctor, I started my journey out of Lyme.
The facade came down when I started treatment. Actually, it crumbled all around me. I felt like Humpty Dumpty. It was going to take a lot more than all the Kings horses and all the Kings me to put me back together again. In fact, they could all just piss off because they weren’t helping! Nothing was helping, I felt horrible, lost, confused and scared.
I woke up everyday in pain, in a fog, exhausted, and depressed. I quit school, I quit work, and I quit a lot of other things that I enjoyed. I felt very alone. My world quickly became so small that there was hardly enough room in it for even me.
I struggled to walk around the neighborhood. I was physically and mentally exhausted. I couldn’t drive a car or go to a store by myself. The sensory overload of normal everyday life was too much for me. I became so sensitive that the pitch of my roommate’s voice drilled deep into my head making me feel physically ill. Some days I couldn’t even muster the mental energy to talk.
Sounds horrible doesn’t it. Well, I’m sure you can all relate. I did my best to remain positive through it all. Starting Lymenaide helped a lot with that. Having support and being connected with people who understood what I was going through was crucial. My family did their best, but it’s not the same. No one could understand what I was going through unless they’d been there themselves.
Over the months my symptoms and my protocol continually changed. It was hard to keep track of everything I was going through. Things kept changing so much that it took me a while to realize that- Yes, when you get right down to it, I do feel better!
I am clearer, I can think again. I am not constantly struggling to find words. I can go to the grocery store by myself, and I remember that it is a credit card I am supposed to give the cashier at the end of the transaction. Not my car keys.
The fatigue persists, but I am able to exercise more and I spend a lot less time in bed. Naps are still a necessity. Admit it though, naps are nice. I don’t plan to give up my naps even when I am healthy!
I still get overwhelmed easily. If I am not careful some of the sensory sensitivities start to come back along with the brain fog. None of this is anywhere near as intense as it was before though. If I respect my limits and listen to the signals my body sends me, I can function quite well. I pay for it dearly if I don’t.
I know that I am sick. I can feel it everyday. Those little buggers are hanging on, but I’m sure that they are starting to lose their grip. They keep trying, but I am fighting back and they’ve got no chance against me! Health will be mine.
Sometimes I feel good, energetic, healthy even. It doesn’t last the entire day, it doesn’t usually last too long at all. However, the better times are appearing more often now than they did before. I’ll take that as a good sign. I know that the good days can disappear as quickly as they arrive on this Lyme roller coaster. I’m happy to enjoy the good days when I get them.
This post is copied from the Goodbye Lyme newsletter, written by Greg Lee, owner of 
