Seven Things My Lyme Doc Taught Me

It took me a long time to find her, but I am fortunate to say that I have a good Lyme-literate medical doctor (LLMD) who has taught me a lot of important things.

If my count is right, she was the 14th doctor I saw before finding someone who was able to help me. Sounds like a lot, but many Lyme patients have a longer list. She could help because she had been through something similar herself, and had the knowledge and compassion to be able to help others get through their ordeals.

So what has she taught me? Probably more than I’m outlining below, but these are the things that come to mind.

#1 – A LOT OF THIS IS ABOUT TOTAL LOAD – Total load means the total amount to stressors your body is facing. Obviously, Lyme is a big stressor. So if you have Lyme, you have to reduce the other stressors.

Doctors who subscribe to the total load theory use the rain barrow analogy. Stressors are like rain that falls into a rain barrow. As long as the rain stays in the barrow you’re OK. But too much rain (i.e. stressors) and the barrow overflows. That’s when you get symptoms.

There’s no shortage of stressors – Lyme, other infections, emotional and physical stress, heavy metals, pesticides, poor diet, dental amalgam fillings and other dental problems, candida, etc., etc. One of the keys to getting healthy is eliminating and reducing stressors and keeping the water from spilling out of the barrow.

#2 – B VITAMIN SHOTS CAN HELP A LOT – One doctor told me not to bother with B12 shots because he said I didn’t need them. Another doctor told me B12 shots were quackery. But my doctor said I should try both B12 and B complex injections. She was right. They helped a lot, giving me some energy at a time when that commodity was worth about a million dollars an ounce to me.

#3 – CATCHING COLDS OFTEN MEANS YOU MADE A MISTAKE – During one of our visits, my doctor was chastising herself for getting a cold. Turns out she felt she made a mistake.

I’d always thought catching a cold or the flu was an accident that couldn’t be helped. But I now see it as something that’s an unavoidable accident about half the time and an avoidable mistake the other half.

Maybe I forgot to wash my hands after being in public during cold and flu season, maybe I skimped on sleep and my immune system suffered, maybe I got stressed out on a day when I felt the first sign of a tickle in my throat. Or maybe something else. This doesn’t mean being a germophobe, it just means that when you have a serious illness like Lyme, you need to be careful to not pick up other infections.

#4 – YOU CAN IMPROVE YOUR EYESIGHT – I’ve always been looking for ways to improve my vision, and I’ve asked several eye doctors this question. They all say there’s nothing you can do.

Not true, says my doctor. She had a strong prescription of -5.50 that fell to a moderate -2.50. That’s a huge drop. She said she did it by gradually healing infections in her body and eyes, taking a lot of antioxidants and intravenous vitamin and mineral infusions.

#5 – PUT THE TOILET LID DOWN EVERY TIME YOU FLUSH – This thought had never occurred to me. But one day I noticed a clipping on her office billboard showing results from a study that showed flushing with the toilet lid up results in a slew of often pathogenic bacteria flying around your bathroom. I’m not sure how much effect this has on total load, but every bit counts.

#6 – EAT ALL YOUR FOOD DURING A SHORT PERIOD OF THE DAY – I’m not sure if this works for everyone, but it works for me. The theory is that your body likes having a decent sized mini-fast every day. I’d mentioned I was having gut symptoms, so my doctor suggested trying to eat all my food in an 8-12 hour window each day.

Eight hours is tough to manage, but most days I eat my food in an 11-hour period and give my body 13 hours to fully digest it and work everything out. Doing this has helped reduce my gut symptoms.

#`7 – NEVER GIVE UP – My doctor has told me stories of her own desperate efforts to stay alive so her young son wouldn’t lose his mother. She never gave up and taught me the same.

The truth with Lyme is you never know when things are going to turn around in your favor. There are umpteen ways of treating it, and if you keep trying, you’re likely to find one that will work for you. So there’s good reason not to give up. It also helps, a lot, to find a doctor who won’t give up on you. When I was down and out and bedridden, my doctor made 10 house calls to try to get me back on my feet. That’s right. House calls. I told you I was fortunate.

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Seven easy ways to not delay your healing

I was going to compile a list of “don’ts” here, but nobody likes to be told don’t do this and don’t do that. So why don’t I make it a list of “avoids”?

We people with Lyme are usually so focused on making sure we do this and take that and see so and so that we don’t pay enough attention to what we should steer ourselves away from.

It’s all about not accidentally shooting yourself in the foot and setting yourself back.Many times what you don’t do is as important to getting well as what you actually do.

#1 – AVOID watching a lot of TV news.  People underestimate the importance of keeping their headspace positive. I’ve worked in television, so I know that TV exists primarily to sell advertising.

To help further this, many things are sensationalized and made to appear more extreme than they actually are. You may have noticed this during the recent U.S. election campaign. It appears the trend will only worsen.

A little TV news can help keep you informed, which is a good thing. A lot can get you depressed and carrying a negatively skewed view of the world in your head. Not so good.

#2 – AVOID eating (much) crappy food. In recent years, health researchers and doctors have been increasingly stressing the importance of a good diet to maintaining health. I’ve seen in my own life what an incredibly positive difference eating the right foods makes. But let’s not go overboard. Healthy food is often tasty, but unhealthy food is often really tasty. So go ahead and cheat, a bit, especially now that we’re in the holiday season.

#3 – AVOID arguing unless you have to. This might be a difficult one for the politically inclined this holiday season in the wake of the recent U.S. elections. But love has an awful lot to do with getting healthy and positive relationships generate love. Arguing has a way of tearing apart relationships, and really, what purpose does it serve 99 percent of the time? Sometimes you have to take a stand, but those times are rare.

#4 – AVOID believing that you’ll never get well. I remember early in my Lyme journey when I just couldn’t see how I could get better. I felt doomed. Big mistake. In his landmark book, “The Biology of Belief,” written in 2005, Dr. Bruce Lipton wrote convincingly of how a person’s beliefs play a huge role in what actually happens to them. This concept is becoming so mainstream that National Geographic just wrote a cover story on it.

The truth is that many, many Lyme patients have emerged from seemingly desperate circumstances to get fully well. Sometimes it’s a new treatment that works for you when previous ones didn’t. Sometimes it’s finding a different doctor who figures out your problem when others couldn’t. In short, there’s good reason to AVOID giving up.

#5 – AVOID pushing yourself too hard. This is especially important to remember during the holidays. One of the most valuable skills a person with Lyme can master is learning how to say no. When your energy level will allow you to do only so much, politely explain to people that this is the case, and it’s very important for you not to overdo it.

Not pushing yourself too hard also comes into play when it comes to treatment. Lyme medications can often cause serious die-off (Herxheimer) reactions, but many doctors in the field are now saying that it’s best not to promote these Herxes as a good thing to be aimed for as has often been done in the past. I believe the newer message is better. It says that Herxes are sometimes unavoidable but that you should try to avoid them.

#6 – AVOID getting down on yourself. I belong to several Lyme Facebook groups and I see a lot of people expressing their dismay at not being good enough wives or husbands or mothers or fathers or sisters or brothers or whatever.

For those who feel this way, give yourself an important gift this Christmas. Look in the mirror and repeat these words. “It’s not my fault. It’s not my fault.” You got sick with a serious illness that limits what you’re able to do. IT IS NOT YOUR FAULT.

#7 – AVOID focusing too much on Lyme. Fighting Lyme is such a full-time job that this one can be difficult. But it helps a lot if you can work towards having as full a life as possible with Lyme being only one component of it. Maybe try setting aside one day a week when you don’t say the L word or even think about it. Maybe Christmas day would be a good day to start.

Photo: shonna1968

7 Easy Ways To Help Yourself Heal

I didn’t want to make the title too long, but it could have been 7 easy ways to help yourself heal that most people don’t do at all or don’t do nearly enough of.

Most of these are no-brainers, so obvious that they really shouldn’t need to be mentioned. But do I have to be reminded to do them? Yes. Do you? Well, let’s find out.

#1 – WASH YOUR HANDS!– Now that it’s cold and flu season this is more important than ever. I’ve done an admittedly unscientific survey about handwashing and it suggests serious problems. Lyme Disease has forced me to move many times and to live with many people. The common denominator. Nobody washes their hands before they eat.

Experts say the most important factor in avoiding colds and the flu is handwashing, and that we should wash our hands frequently, especially after using the washroom and before eating. My survey hasn’t included bathroom habits, but I suspect the worse.

#2 – EARLY TO BED! – Science tells us that the hours of sleep before midnight provide the greatest benefit. Does 10 p.m. sound reasonable? Can you squeak in 9:30 without feeling like a boring old fart? So you’ll miss a bit of TV. Nobody ever went to their deathbed regretting that they hadn’t watched enough TV.

#3 – GET OUTSIDE! – We were not built to spend 90 percent of our time indoors like most of us do. Studies show that outdoor air is generally much healthier than indoor air. The air is even better if you can get out to the country, or to the beach, or to a mountain. Of all the things that have helped me in my journey to getting well, fresh air is near the top of the list.

#4 – FLOSS YOUR TEETH! Are you kidding? No. This is no joke. Doctors who specialize in chronic illness are increasingly stressing the importance of oral health. Some go so far as to say that cavitations, root canals, hidden dental infections, and the like are some of the primary things that cause recalcitrant health problems.

The good news is that fixing dental problems in a careful way and paying strict attention to oral hygiene can be major factors in getting you well. So think floss before bed, and while you’re at it, brush those choppers two or three times a day.

#5 – GET OFF YOUR BUTT! – I understand that this doesn’t apply to many people with chronic illness who can’t get off their butts. But if you can, go for it! Doctors are nearly unanimous in pointing to our sedentary lifestyle as the cause of a myriad of ills.

We were built to move, so move as much as you can. If all you can do is stretch, then stretch. If you’re stuck at a desk, get up and take as many breaks as you can get away with. Go for walks as often as you can.If you can do it, park the car a short distance from your destination and walk in. Take the stairs instead of the elevator. You’ve heard this all before. Just do it! Nice slogan, eh.

#6 –  SMILE! – I’ve had severe chronic Lyme to the point where it almost killed me, so I know that sometimes it’s next to impossible to smile. But if you can, it’s going to help you a lot. Studies suggest smiling can cut stress levels, lower your heart rate, and even make you look younger and more attractive.

#7 – LAUGH! – Again, a tricky maneuver when you’re really sick, but worth the effort. By now, most everyone knows that laughter produces endorphins, which make you feel good and are good for you. My unscientific household survey also shows that most people don’t laugh much.

So lighten up everybody, for your own good! If you have an Internet connection, there are scads of funny things available on YouTube, iTunes, and other outlets. If you’re not big on the web, how about telling jokes? My elderly mom is a big fan of joke books. Most of the jokes are corny, but who cares? It’s not about winning Nobel prizes for Literature. It’s about making you laugh, and, more than that, it’s about helping you to get well.

Photo: Douglas Scortegagna

Summer break! – Time to get outside

It’s ironic that something that increases your risk for Lyme is also something that’s very helpful for healing Lyme.

The crime many Lyme sufferers committed was having a love of fresh air and sunshine. If they’d stayed inside all the time, they probably wouldn’t have gotten Lyme in the first place.

But for me, having Lyme hasn’t killed my love of nature. In fact, I feel a lot better when I spend time outdoors. So that means I’ll be spending a lot more time doing that in the upcoming warm months and less time sitting inside blogging.

Thus, lymetips.com is on summer vacation. I may post a few times if something special comes up, but the plan is to increase the pace of healing by getting as much sunshine, fresh air and exercise as I can tolerate.

See you at the beach! And don’t forget the bug spray!

Photo: Eric Davidson

LDI: What I’ve learned

Okay.Here are the stats. Eight months of Low dose immunotherapy. Five injections for Lyme and co-infections. Two instances of moderate flaring of symptoms, one mild to moderate flare, one mild flare, and one very mild flare. Seem to be closing in on the target dose.

So what have I found out on this long and sometimes baffling journey? One thing for sure is that it can be very difficult to find the target dose. Beyond that, here are some other observations.

Take it easy and get your rest after taking the LDI dose. It’s a tiny looking amount you’re taking, but it’s packed with dozens of Lyme and co-infection antigens. If you have a lot of co-infections, your body could be in for some heavy flaring if it’s not your target dose. The antigens are essentially homeopathic nosodes (made from micro dilutions of dead microbes), which can stimulate your immune system to fight. Dr. Ty Vincent, the founder of LDI, says that if you’ve found the core dose, you shouldn’t have any flaring. But finding the core dose takes time, and flaring is a lot more common than not flaring.

Take it especially easy once you’ve determined that you are flaring. I learned this with a recent dose. I could see a mild flare had started, but I had a lot I wanted to do that day. By 7 p.m. I felt dreadful. I scheduled extra rest in the following days, and from then on the flare caused no serious distress. Lesson learned: My body needed extra energy to handle the flare.

LDI doesn’t work as well for me in winter. I live in Canada where even mild winters like this past one are plenty cold. I found it much harder to tolerate a flare in January than I did in September. The reduction in fresh air and sunshine negatively affects immunity, as does the increased number of viruses and other other bugs kicking around in mid-winter.

Some flares may have a silver lining. In two instances, I felt better after the flare was over than I had before the flare started. This is not the way it’s supposed to work, according to what Dr. Vincent has said in interviews. This isn’t criticizing Dr. Vincent, who has done tremendous work with LDI, but in just about every field sometimes the general rules don’t apply to everyone. Several other people on the LDI for Lyme Facebook group noted they’d had the same experience of feeling better after the flare than before the flare.

If you’re very sensitive or have had Lyme for a long time or have a lot of co-infections, it’s probably best to do one set of antigens at a time. Along with LDI for Lyme and co-infections, you can add in yeast, mold and other antigens. I fit into all three categories mentioned in the heading of this paragraph, and I’ve had plenty to handle with the LDI for Lyme and co-infections antigens. I can’t imagine moving on to other things until I’ve found my core dose.

It’s a good idea to work on reducing microbial load before doing LDI. This is especially true if you have a lot of co-infections. As I mentioned above, an LDI dose can give your body a lot of work to do if you’ve missed the core dose. I’m very glad that I’d taken a lot of antimicrobial herbs and  done other microbial load reducing work in the time leading up to my first dose. If I hadn’t, the process so far would likely have been a lot more problematic.

Napping can be an effective weapon once you’re determined you’re flaring. I’ve found I can save myself a lot of misery if I take a nap as soon as I’m certain a flare has started. I don’t like napping, so I didn’t do this in my early days of LDI. But I have since found that my mother was right years ago when she told me that if you’re feeling sick, lie down and rest. Works for colds, flu and LDI flares. It’s probably good to increase fluid intake too.

I probably wouldn’t have wanted to try LDI when I was really sick. Finding your target dose can be an intense process that includes a lot of flaring. I’m at a point in my recovery where I can handle that, but in earlier days when I felt dreadful all the time, having a lot of flares may have placed too much stress on my body and provoked a serious setback.

Different batches may affect potency. This is controversial. Some people on the LDI for Lyme Facebook group say the doses don’t lose any strength if they were made many months before injection. Others disagree. All I can say is I initially reacted more strongly to an 18C dose from a fresh batch than I did to a 17C dose from an old batch (18C is weaker than 17 C, so I should have had a stronger reaction to the 17C).

Don’t assume the flare period is over when you start feeling better. I’ve had two instances where it looked like the flaring process was finished after seven days. But then on days nine and ten after taking the dose, I had my most intense flares.

It can be a good idea to take a break in treatment.  This happened to me this past winter. I had a near three-week flare, and it was time for my next LDI shot, and I still wasn’t feeling great. The picture wasn’t clear, so I decided to wait a few weeks until I felt better before resuming LDI. Things soon settled down, and now I’ve taken my next shot and things appear to be back on track.

It’s important to be very patient. An LDI flare can make you feel so sick you want to quit. And sometimes it can be a good idea to quit if the treatment is clearly not working and does not look like it ever will. But for most people, it’s a  matter of realizing this is a new thing that can be both very difficult to figure out while at the same time offering a real hope of substantial improvement and even complete remission from Lyme. Knowing that makes patience a lot easier to muster than would otherwise be the case.

Cutting the cost of Lyme

I’ve always been pretty good at finding ways to keep my wallet stuck inside my pocket, but since getting Lyme disease I’ve been forced to further refine the art of not spending money.

Make no mistake, getting well from Lyme can be very costly. There are often physician visits, antibiotics, lab tests, supplements, sometimes top-quality herbs, etcetera, etcetera. So I’ve found that creativity is needed to save some of those ever-shrinking funds.

You can always cut out frills, but you have to eat. When I first got sick, I had to change my diet and it was strange and difficult. But once I made the paradigm shift, I found the new normal to be far superior, and cheaper.

Successfully making these changes required seeing through a couple of food myths. The first: Vegetables and fruit are expensive. The second: Going gluten free is really expensive.

Eating lots of vegetables, health experts agree, promotes better health. And while some veggies are costly, many of the ones most helpful for people with Lyme are cheap, such as garlic, onions, leeks, cabbage, parsley, and carrots.

When I go to my fruit and vegetable store (a much better option than the supermarket) I aim at 30 cents per serving of veggies, and I easily meet that goal. And if you want to spice things up, you’ll find that spices are often the cheapest foods you can find.

Staying within that price range with fruit is tricky, often requiring buying sale items. I also buy the smallest pieces of fruit available, as this reduces both cost and sugar intake.

It’s not a myth that organic produce is expensive. If you can afford it, great, but even if you think you can’t, sometimes you can. My store sometimes has specials where the organic version of a veggie is cheaper than the conventional one.

I find it difficult convincing people that gluten free doesn’t have to mean breaking the bank. If you can’t imagine a world without packaged food, then gluten-free prices are ridiculous. But if you shift to eating fresh veggies, fruit, eggs, nuts, seeds, non-gluten grains like brown rice, quinoa and buckwheat, and moderate amounts of meat and fish, you’ll be off gluten with substantially reduced cost.

I’ve also learned that I can save a lot by eating prebiotic and probiotic foods. There are dozens of them, usually common everyday items, and you can find their names with a quick web search.

This reduces my need for expensive probiotic supplements. And some experts, like Dr. David Perlmutter, author of the bestsellers Brain Maker and Grain Brain, and Jeff Leach, author of Rewild, say that while bottled probiotics are good, eating a wide variety of probiotic and prebiotic foods is also important for gut health.

I’ve found several other areas besides food where I can fight Lyme inexpensively or without cost.

Lyme patients must handle exercise cautiously. If your body is exhausted, it’s foolhardy to do anything but light stretching. But for many, exercise can produce significant health gains. Dr. Joseph Burrascano, a leading Lyme physician, is among those who advocate substantial regular exercise for Lyme patients.

Fortunately, I can exercise, but I can’t afford gym memberships. So instead of paying hundreds of dollars, I bought a $10 book off Amazon outlining dozens of body weight exercises. These exercises use your body’s natural resistance as weights. Push-ups are one example.

Making this approach more valuable is the option to do it outside – in your backyard, at a park, or best yet at the beach or ocean. I’m allergic to mold and several other things, and the breeze coming off the water clears away a lot of the allergens.

That brings me to two of my favorite free Lyme helpers – fresh air and prayer.

No one would dispute fresh air’s benefits. Studies suggest outdoor air is generally much cleaner than indoor air, so I get outside as much as I can – of course guarding carefully against further tick bites. I also open my windows as much as possible, as long as there are no allergens around and as long as it doesn’t put me in the way of a draft.

Prayer, on the other hand, has its believers and its doubters. I’m a believer. Some studies say prayer promotes healing; others say it doesn’t. But in my experience, I feel I’ve seen important benefits.

The act of prayer itself usually promotes a state of calm, similar to what would happen in meditation, and being in a peaceful state helps everyone. And meditation, of course, can be free too. One method is a simple breath meditation, where you still yourself and follow your breathing.

Healing prayer with laying on of hands has many skeptics, but I feel I have received a considerable health boost as a result of it, and it hasn’t cost me a cent. If interested, you could find out about this option by asking around at local churches or by checking the web. Healing prayer by phone is also offered through many sources, one of which is well-known Lyme author Connie Strasheim, who has regular prayer calls. Information can be found at her website – www.conniestrasheim.com.

Perhaps the widest variety of useful, free resources can be found at the local library. I can get not only free printed books, ebooks, and audiobooks, but also free movies and music and free computer and internet access.

An ongoing battle with Lyme means that you never know when you can use that extra cash you kept in your bank account. Maybe you can try a new treatment that shows promise, or travel to see a top-notch physician. And while holding on to money may not be as much fun as spending it, I think I’m one of many people who derive no small amount of joy from finding new ways to save the stuff.