Please let me know what you thought about the part of the Dr. Phil show devoted to Lyme. If you read the transcript of the Diane Rehm show, tell me what you thought about that as well. Leave your thoughts in the comments section. Thanks!
Apr 142012
Dr. Phil, courtesy Gregg O'Connell
This is huge: Dr. Phil will be talking about Lyme disease tomorrow, April 13. See http://www.drphil.com/shows/listing/ After you have selected your state, check the listings for the channel and air times. To see a preview, click on http://lymedisease.org/news/lyme_disease_views/dr-phil-lyme-preview.html
On February 29th of 2012, Diane Rehm of the Diane Rehms Show (WAMU 88.5–NPR) featured comprehensive coverage of Lyme by interviewing researchers and doctors from leading universities. See http://www.thedianerehmshow.org/shows/2012-02-29/diagnosing-and-treating-lyme-disease
Don’t forget to sign the petition to remove outdated IDSA guidelines from the National Guidelines Clearinghouse. See my February 2, 2012 post to sign.
Turn the Corner Foundation has joined the Tick-Borne Disease Initiative to create a strong new organization called the Tick-Borne Disease Alliance (TBDA). Together, they will dedicate themselves to awareness, advocacy, and promotion of research. See www.TBDAlliance.org
On a last note: Be a Lyme advocate. Join other patients; tell your story!
Worry, Daryl Cauchi, Flickr, Some Rights Reserved
“Most of my worries never came true.”
My great-grandfather
Here’s the Thing: When you worry, you’re not in real time. Most of the time, you’re either thinking about the future or the past. You’re not living in the present moment! Your worries have nothing to do with what’s actually going on around you. What that means is that you’re thinking about something hypothetical, something that may not even be true or may not exist!
Read this scenario: My friend MC and I were on vacation at Glacier National Park. The scenery is some of the most spectacular in the world. MC left her sick husband behind, but he was in good hands. Meanwhile, a hurricane was forecast in New England. Ok, that sounds bad. She had a house in Connecticut, but her friend AR was going to check on the house.
Yet, when we were driving through amazing scenery, MC hardly looked at it. She spent almost her whole time worrying about her husband, the hurricane, and so on. She was so worried, that even though she was only in Glacier for a week, she was ready to go home two or three days early. She kept checking the hotel’s front desk to make sure she had the checkout details right. The desk clerk even laughed that she was ready to jump on the plane. To her, the vacation must have gone by in a blur. Yet, when she got home, her husband was about the same, and her CT house only sustained minor damage from flooding in the basement. If she had enjoyed her vacation, she would have lived in the present, instead of in the future. So . . .
1. Worry is like an imaginary place that doesn’t really exist. You have to learn to live in the moment. Whether you’re criticizing yourself or worrying about a car accident, the worry is only a thought and doesn’t exist in the present moment. You have no idea what others really think of you, and the car accident is in your imagination. However, worry tends to perpetuate itself, like an endless cycle, until you’ve driven yourself crazy. Worry also makes what you’re worrying more likely to come true. If you tell yourself, “I will not have a car accident!”, it’s like saying, “Don’t think about elephants!” What happens? You think about elephants. So if you say, “I will not,” the probability is more likely that you will. My point is: Instead of worrying about car accidents, slow down and enjoy the ride. You know the cliché: Think about the journey, not the destination (or the possible accident). And for God’s sake, stop honking your horn and flipping the bird! 
Just be here!
2. Live within your envelope. Instead of thinking about what you don’t have, experience what you do have. Now it’s hard not to worry when you’re chronically ill. You have to deal with doctors, bills, health insurance, and a feeling of isolation, or of feeling misunderstood. That’s why you need to do what you can to enjoy the moment, but within your limits. Don’t disappoint yourself with unrealistic expectations. I had an online friend who was bedridden. On days she could walk, she enjoyed going into her backyard, and just sitting on a small patch of dirt! When she was in bed, she enjoyed knitting. Her children visited, and her husband gave her a lot of support. She got enjoyment out of life even though she could barely walk across the room to turn off the light.
3. Ask yourself: What’s the worst thing that can happen? My friend J gave me this tip. So if you’re late for work, the worst that can happen is that you’ll be a little embarrassed. A year from now, it won’t even matter. Now think again. If you’re not in the moment, and you’re rushing to be on time, the worst that can happen is a car accident. So it’s better to slow down, stop rushing, and live in the moment. Crashing your car is worse than being a bit embarrassed. Go ahead and be late, and learn from your mistake. Then let it go.
Now here’s a novel idea: When you’re seriously ill, the worst that can happen is bad pain, or even death. When my mother was terminally ill, my cousin told me, “Life is a terminal illness.” At first I thought he was being insensitive, yet I thought about what he said for years to come. Most people feel severe pain at some point, and everybody dies. No exceptions. So instead of thinking about death, live your life while you still can.
4. GET OUT OF YOUR HEAD AND LIVE IN YOUR BODY, AND IN YOUR SURROUNDINGS. I wrote this in all caps, because it can help you so much. How do you do this? Listen to what your body has to say to you, and follow its promptings. It’s as simple as, if you’re hungry, eat. If you feel pain, get a hot pack. This is very helpful with sleep, because if you can’t fall asleep, get out of your head/mind, and pay attention to the fatigue and the other sensations in your body. You’re much more likely to fall asleep when you listen to your breathing, and feel how tired you are, then when your mind is racing.
More importantly, be mindful of everything that you’re doing, and all of your surroundings. Use your senses: smell, vision, touch, and taste. Enjoy what you’re eating. Literally smell the roses! Leo Babauta, author of the Zen Habits blog (www.zenhabits.com) talks about being mindful when you sweep the floor or do the dishes. Take walks and pet the dogs. If you absolutely can’t get your worries out of your mind, make a list to “get rid” of your worries, then act on the list later, by doing things to solve your problems.
5. Learn meditation or relaxation techniques to help yourself live in the present. Meditation is all about living in the present, and being aware of what is going on. Relaxation techniques help you feel the different parts of your body as you relax your muscles, follow your breathing, and so on. Go outside, and do Zen meditation with your eyes open, so you can really be part of your environment.
6. But don’t confuse worry with depression. Before I started taking antibiotics, I was in a dark hole, and I was panicking. I was slurring my speech, I couldn’t remember words, I couldn’t drive, and I–with a graduate degree in English–couldn’t read! I wasn’t illiterate, but I couldn’t focus at all. That was the time to get professional help. Thanks to other people with Chronic Lyme disease, I was able to find resources, an LLMD, and medication that helped me make it through dark times. I still feel shaky, but I also feel the miracles of being able to read a book all the way through, walk the dogs, and even clean my house! I can’t summit a high mountain, but if I climbed the mountain just to get to the summit, what would be the point?
Time for Change!! istock
Would you rather stay with anything that’s old-fashioned, stick-in-the-mud, traditional? You might as well pretend that the world is still flat, and that Columbus will sail over the edge of the ocean. I suppose the good ole’ boys in Columbus’s time refused to endorse peer-reviewed scientific research from outside their own (small) organization.
So, here’s the point: The Infectious Disease Society of America (IDSA) controls any treatment that any of us with Lyme undergo (not to mention whether the insurance companies boot us). The IDSA follows outdated guidelines.
According to lymedisease.org, “All treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). The NGC requires that guidelines be updated every five years.” Well guess what? The IDSA hasn’t revised its guidelines in well over five years, and the NGC let this go. Sign this petition to remove the outmoded IDSA guidelines from the NGC. 8,000 have already signed the petition; think what would happen if 10,000 or 15,000 also sign? Might we go the way of change? Please ask all your friends and relatives to sign as well!
Go to www.lymedisease.org/petitionscript/index.php to sign. It’s easy.
Feb 012012
- Author with her “amazing” dog, all rights reserved.
Ok, so I’m late with my “Dear Friends Christmas Letter.” Aren’t we always a little late with our Christmas letters and cards? Anyway, the point here is to tell you about my notorious year with my talented “progeny,” my two dogs, Sophie and Molly. Tell me what you think, and be impressed, or laugh a little while you can.
Dear Friends,
This has been a very eventful year. So eventful, in fact, that I felt someone had placed a Voodoo curse on me.
I don’t have any progeny to speak of, except for my canine companions. The most amazing accomplishment my dog Molly can boast of was leaping a fence in a single bound and herding a very astonished group of otherwise complacent, cud-chewing cows (picture not available). My other dog, Sophie, boasts of having one blue eye and one brown eye. We call her brown eye the “good eye,” and her blue eye the “evil eye,” as she has a knack for being loveable, as well as jumping on dinner guests, play biting, and mercilessly hounding Molly, who now has arthritis. Oh, and perhaps Sophie’s most amazing accomplishment of all is humping other dogs, even though she is a she. At least, they keep me company, which is more than some people can say of their more real amazing progeny. And it’s certainly more than I can say of most of the important persons in my life.
Sophie (all rights reserved)
In late Spring, I noticed–when I took my pulse–that my heart was beating at the record-breaking rate of 150 beats a minute, even though all I had been doing was folding clothes. I told my then boyfriend L., “Umm, I think I need to go to the ER.” L. gave a casual look of concern, and said, “Oh, they won’t do anything for you in the ER. You’ll have to wait for hours, and the doctors who work there are really inexperienced. They’ll just send you home.” I continued folding clothes until I noticed I was having trouble breathing. I drove myself to the ER. Funny thing is, I didn’t have to wait a minute. The nurse took one look at me, and said, “Triage!” The long and short of it was that my thyroid levels were way out-of-bounds. I was dutifully medicated, hooked up to the IV and the heart monitor, and I stayed overnight. The ER doc. said I needed to see my family physician the next day.
The catch is, my family doc. didn’t have any appointments the next day, as the receptionist gleefully announced. Or the next, or the next, or the next. He told me to get a blood test in two weeks. During those two weeks, I realized I couldn’t even do the simplest of things, like climbing stairs. I began falling over like a rag doll. I continued to go about my daily life, and went for a swim in the river, only to realize I couldn’t climb back up the bank (well, ok, it was a steep bank, but there were stairs). My then boyfriend threw me a small inner tube, and I had to float downstream with my trustworthy dog, until I could find a “flat” place, but at that point, I could only crawl out. At least L. came to meet me in the car.
After the blood test, the results of which didn’t come back for yet another two weeks (making the entire wait time a month), I became well acquainted with the porcelain bowl. My stomach churned with a peculiar strength, kind of like one of those dryers to which you become a voyeuristic spectator. I went to my trustworthy physician, who said maybe it was the fish I had eaten the week before. Finally, the blood tests came back. My otherwise calm physician was strangely alarmed. This time, he wanted me to come by that very afternoon. He then announced that I was in a “Thyroid Storm,” which is life threatening. Oh well.
It was determined that I should have surgery to remove my thyroid, with its two accompanying tumors, which were also producing thyroid hormone. Shortly thereafter, my father had a stroke. The stroke was serious, so even though my surgery was scheduled on Monday, I left on Friday to fly to Miami. I packed in a record ten minutes and broke speed limit records to get to the airport. I also paid a record plane fare. I returned for my surgery, which only took about six hours. This time, my usually unconcerned boyfriend paced the waiting room. The next day, as I lay in my hospital bed, thankfully full of Morphine, my sister called to announce that my father had died. At least the Morphine served a purpose. And hey, the tumors were benign!
That was the beginning of my long, slow regression. I felt I was entering the negative zone of the number line (as in integers). What is the opposite of accomplishment? Deflation, as in a deflating balloon, that whizzes aimlessly around the room as it gives out its last hopeless squeak? Of course, at that point, I didn’t realize that I was going to have another eventful year (by the way, the described events actually took place in 2008) on my downward slide toward Chronic Lyme Disease, which virtually no one believes in, except doctors who have dissected the cadavers of unlucky Chronic Lyme Disease victims, only to find the remains squirming with spirochetes, which are what cause the damned disease.
I lost my job, due to supposed budget cuts, although my cheerful boss quickly added, “Well, you were on thin ice.” Oh, and despite the budget cuts, she hired someone to replace me. After that, I began to feel that I had been cursed. Maybe an angry relative had taken a little doll effigy of myself and stuck it full of pins?
Voodoo Doll, Vincent Ma’s photostream, Flickr, Some rights reserved.
Readers, I hope you at least got a laugh, if nothing else. Also, realize that accomplishment is not always desired, especially when it is a farce, as in the boasting of most Dear Friends Christmas Letters, ie, “My son graduated Magna Cum Laude (sounds like a volcano) from such and such high school.” Who gives a crap? Ok, I’m sorry if you write Dear F. Xmas Letters. At any rate, sometimes you learn more from devolving than from evolving, as in (from being sick as opposed to well, successful, etc.).
By the way, I do feel better since 2008. And the point is, take your circumstances, and make lemonade out of the annoying lemons. And laugh, laugh, laugh! That is better than boasting, by far.
Is That You? Flickr, Some Rights Reserved, Cali.org
Do you have a pile of paperwork that looks like the leaning tower of Pisa? Is your paperwork eating you alive?
When you’re sick, the tendency is to let housework and paperwork go, especially when your batteries have run dead. The problem with that is that (1) your paper will collect like dustballs in every corner and on every countertop or table in your house; and (2) your bills won’t get paid, your taxes won’t get done, and you won’t know where anything is. Paper will literally snowball, until the problem has become uncontrollable, and you’ll end up with even more to do. Eventually, you’ll just give up the ghost, and the people surrounding you really won’t understand. They’ll think you’re really lost.
You can actually take some relatively simple steps to deal with the paper monster. Ok, you’ll need to take at least one day off to deal with the initial paper decluttering.
- First, get all the paper you can find in your house (you can do filing cabinets another time), clean your dining room table, and dump it all indiscriminately on the table. It might look intimidating, but once you get THIS STEP out of the work, I’ll give you some easy methods to keep up with your paperwork.
- Get thee your recycling container and the trash bag. Remember, you can’t recycle the shiny, plasticky looking stuff. It goes in the trash, as do envelopes with windows.
- Find some manilla folders.
- SORT: Put you paper in as few piles as you can. Label your manilla folders. Try not to use too many categories, and be careful with the “miscellaneous” category, as that one tends to get out of control.
- THROW AWAY OR RECYCLE AS MUCH AS YOU POSSIBLY CAN!! The fewer papers the better. That means throw away all junk mail, sweepstakes, old greeting cards, four-year-old tax returns, etc. etc. Just pretend you’re a paperwork anorexic. You want to be lean in the paperwork department.
- Pay all bills immediately. No waiting around. Have envelopes, stamps, and checkbook handy.
- Put your (hopefully) small piles in their respective folders, for example: health insurance, Social Security disability, health and medications, etc. You had better not have more than ten folders!
NOW, how do you deal with incoming mail?
- As soon as you get your mail, sprint inside, and take care of it immediately. If you have an appointment, you can do it later in the day, but DO it that day.
- All you have to do are three simple things: Throw crap away, pay bills, and file.
- When your files get too big to store in ONE DRAWER, rifle quickly through some of the folders and get rid of stuff that no longer applies.
- When you get pamphlets or announcements in the mail, write down or key in the appointments (with a brief description) in your calendar, then throw the pamphlet away.
- If the pamphlet doesn’t include a specific date, get a notecard, and write down the info. (ie horseback riding lessons in Laurel Springs). You can also write down websites. Tape the notecard to your bathroom mirror, or in the front cover of your catalog. Either that, or call the horseback riding outfit and make a date for your first lesson (if you feel well enough!!)
Just do these things everyday, and the papers will disappear. Now you can deal with real dustballs or dog hair.
The good thing about paperwork is that it’s relatively sedentary, and you can do it sitting down. If you’re having a flare, just set your timer for ten minutes, and do the paperwork in small increments.
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Lone-Star Tick, Flickr, some rights reserved, b_nicodemus
Click below.
See People\’s Pharmacy for more information.
According to the well-respected PBS radio program, “People’s Pharmacy,” a Lone-Star tick bite can cause a delayed allergic reaction to red meat and other substances.
Once the tick bites you, you can get an allergic reaction or go into anaphylactic shock every time you eat the offending food. It sounds strange, yet this disease is showing up all over the Southeast, which is widely inhabited by the Lone-Star tick.
Apparently patients began to show up in ERs with a delayed anaphylactic reaction to–at that time–an unknown substance. If an affected person ate red meat, the allergic reaction often happened many hours after the initial exposure to the meat. Typical allergic reactions occur soon after ingestion of the offending food, not nine hours later.
Mike Beck, who had received tick exposure during yard work, woke up in the middle of the night with a stomach ache, rash, and hives. He had eaten red meat before going to bed. The second time he ate red meat, he went into serious anaphylactic shock, and had he not gone to the ER, he would have died. The only cure for him was to avoid all red meat.
Researchers and physicians discovered that something in the tick saliva encourages antibodies to a substance called Alpha-Gal. Due to these antibodies, the tick bite induces a reaction or anaphylaxis to certain foods or products.
What to look for: Beware of areas heavily inhabited by deer (whose population is rapidly expanding), as deer carry ticks. If you are bitten by a Lone-Star tick, and you receive intense itching (a hallmark sign of Alpha-Gal), you should probably take action, especially if you have some kind of allergic reaction after eating red meat or other foods. At that point, you will want to purchase an Epi-Pen, a kit you can carry with you at all times to arrest anaphylaxis.
Note: From now on, my Thursday post will be called, “News and Reviews.” It will include pertinent news in the Lyme world, or a review, or both.
Forums and message boards are great ways to connect with the Lyme world, get and give advice, ask questions, and commiserate . . .
Here are what I consider some of the best patient forums:
www.prohealth.com At first glance, this site seems to focus primarily on selling products. But on closer look, you’ll find a lot of information about a number of health issues, including important research, articles, and message boards. Two individuals diagnosed with CFS and Fibromyalgia started this project primarily as an informational site that sold a few supplements; the site boomeranged from there. When I started going on the message boards, there were three or four boards: Fibromyalgia, CFS (also known as ME), and Lyme. The boards, and the site, became so popular that the authors added many more message boards, on topics including arthritis, cancer, and Candida. Many people stay on the boards for years; some make good friends, eventually going on to meet their fellow subscribers. Subscribing to go on the message boards is free. My only concern is that, the more boards and illnesses it adds, the more this website seems dispersed. The site was its best when it focused primarily on CFS, Fibromyalgia, and a few related illnesses, including Lyme.
www.mycrazysexylife.com/ Did you ever see the TV series and documentary, “My Crazy Sexy Life?” I believe it was aired on PBS (correct me if I’m wrong). It’s about the ups and downs, humor, and devastation of women who experienced breast cancer and survived. As a breast cancer survivor myself, I really identified with the women. Anyway, this site is based on the documentary.
Unlike ProHealth, the site is not centered on commerce, but on a series of forums and message boards. The site only features a few ads, but the author doesn’t sell anything. Rather than being structured around specific illnesses, like ProHealth, these boards feature an “anything goes” theme, as long as the thread is related to experiencing chronic illness. The “life lounge” focuses on more general issues, such as “Guided Meditation Recommendations?” or “How do you Dig Yourself out of the Blahs?,” while the “Groups” focus more on more specific threads related to issues like diet, particular illnesses, and so on. Before you go into the groups, you can do a search on particular topics or illnesses, like . . . Lyme, of course. This site lets the subscribers take over and generate their own threads or themes. As such, the site seems to be more reader-focused, or, I should say, subscriber-focused. My Crazy Sexy Life also includes videos, recipes, the author’s blog, and info. about members, along with really detailed member profiles.
Online Lyme Support Groups in Each State!
CALDA, which has switched to a new URL (news flash!), www.lymedisease.org features “moderated online patient support and information {Lyme Disease} groups . . .” for each state. Each group has a moderator, who dives in and answers questions, posts significant news, and so on. Sometimes CALDA’s own Phyllis Mervine (you may have heard of her) answers or comments on individual posts. Great for finding information about Chronic Lyme Disease in your own state. I found out about an in-person support group which meets in my state. Beware: In an effort to protect LLMDs’ privacy, the boards have instituted this policy: Don’t use doctor names or initials in these groups, or you might get grounded (suspended, that is). If you want to find an LLMD, ask for exactly that, an LLMD. Whoever has the answer can then send the specific information to your email (as opposed to the yahoo groups mail). To get on your state’s online support group, go to
http://health.groups.yahoo.com/group/YOURSTATENAMELyme
Let me know what your favorite message boards, forums, or online support groups are by going to Comments!!
Oct 062011
“Lyme” Controversy, courtesy of mrpattersonsir, Flickr, Some rights reserved
Chronic Lyme Disease represents one of the most heated controversies in modern medicine. Here’s the controversy in a nutshell . . . .
Part I. All medical groups–like the CDC, the NIH, the IDSA, and ILADS–agree that Lyme Disease exists. Here’s the catch. They don’t agree about a number of issues, including:
- Chronic Lyme Disease vs Acute Lyme (ie, does the chronic form exist?)
- Diagnosis and symptoms
- Testing methods, and the way tests are read
- Treatment and length of treatment.
The Infectious Disease Society of America (IDSA) has a monopoly on how all forms of Lyme Disease should be approached by doctors, researchers, and insurers. In a Democratic society that is supposedly controlled by checks and balances, monopolies are not supposed to occur. That means that all opinions must be taken into account. The IDSA has created a series of guidelines, called the IDSA Guidelines. Most doctors, apart from the rare “Lyme-Literate MDs,” or LLMDs, go by that single set of guidelines. The CDC and the NIH also go by these guidelines.
On the other side of the debate, a number of organizations, such as the Turn the Corner Foundation, CALDA, ILADs, and the LDA, say that Chronic Lyme Disease not only exists, but it must be diagnosed and treated in an entirely different way than that advocated by the IDSA. The ILADS, an international organization, has created its own guidelines (the ILADS Guidelines), which differ radically from the IDSA Guidelines.
Part II. What then are the problems with the IDSA?
- For one thing, the IDSA only has 14 members, and these 14 determine how Lyme is to be approached in the entire US, as well as in other countries who don’t know otherwise.
- Very little research has been done on Chronic Lyme Disease, and the IDSA agrees that almost no new research needs to be done or funded. So its guidelines are outdated, dating from the time Lyme Disease was first discovered, in the mid-1970s. Such a situation (lack of continuing research) is unheard of in modern medicine.
- The IDSA essentially believes that Chronic Lyme Disease does not exist, or if it does exist, it should be treated the same way acute Lyme is treated–by a 30-day course of antibiotics.
- The IDSA and CDC follow a “standardized” method of testing, the Elissa Test, which can give as many as 64% false results (false negatives). They generally do not recommend the Western Blot Test, which tends to be more reliable. The Western Blot consists of a series of bands, and certain of those bands are much more important than others when they are positive. However, even when the CDC does use the Western Blot as a diagnosis, it selects an arbitrary number of bands, and does not consider whether the important ones are positive or not.
- Treatment of Lyme is highly contested. As said, the IDSA and CDC advocate treating Lyme (whether it is acute or chronic) with short-term antibiotics. The primary view in modern medicine is that overuse of antibiotics is bad, since people develop a tolerance or a resistance to antibiotics. While this point of view has some merit, as a doctor of mine put it, “Antibiotics are the least of your worries when you have Lyme.” Chronic Lyme can be fatal, and long-term antibiotics are the only known form of treatment. Remember, the research hasn’t been done to find another cure, or to test the use of long-term antibiotics.
- Last but not least, court documents show that the IDSA panel has “conflicts of interest,” (see www.nhpr.org/node/29157), including ties to drug companies and insurance companies. These companies may even pay the members of the IDSA to keep their points of view. Why is this? The treatment of Lyme is considered to be very expensive, and insurance companies don’t want to pay for treatment, while drug companies don’t want to pay for research.
Western Blot with its Bands, Manic Street Preacher, Flickr, Some rights res
Part III. What needs to be done?
Doctors and the general public need to be educated! Yesterday I saw my GP. When I asked her what her view of Lyme was, she said that Lyme exists mostly in the Northeast, and not in other parts of the country. How is it then, that I caught Lyme Disease in North Carolina, and more recently, when I went for a walk in an NC state park, I came home covered with tiny, poppy-seed-sized ticks? Why did the Raleigh NC paper, the Raleigh News and Observer, headline the rapidly increasing occurrence of Lyme in North Carolina? What it all amounts to is: Doctors don’t get educated about Lyme Disease in medical school. YOU are left with the brunt of educating your doctor with books, pamphlets, etc., assuming he/she is willing to accept advice from a patient.
One of the things you might mention to family, friends, and doctors, is that Richard Blumenthal, the Attorney General of CT., sued the IDSA, based on its one-sided panel, and its conflicts of interest (its links to businesses like insurance companies). The IDSA promised to review its own guidelines in the presence of “the other side,” that is patient advocates who have Chronic Lyme, and the LLMDs, the doctors who treat Chronic Lyme. The IDSA convened, but did not accept any evidence from the opposing point of view. The doctors and researchers who presented information were all on the IDSA’s side. Now, a number of states, including CT, RI, MA, Ca, and NY have state legislature protecting LLMDs. Many LLMDs, however, continue to be prosecuted for prescribing long-term antibiotics, or IV antibiotics.
Other than providing information, you need to advocate for yourself, and support not-for-profit organizations like the Turn the Corner Foundation. Educate yourself, and read about what’s going on in the Lyme world, so you can present others with a convincing argument!
In “Lyme Policy Wonk,” Lorraine Johnson exposes misconduct in the Lyme world: “Newly Discovered Tick Pathology Borrelia miyamotoi, May Increase Safety Risks in NIH Tick Feeding Study.”
http://www.lymedisease.org/news/lymepolicywonk/824.html
Lorraine Johnson, JD, MBA, CEO of CALDA, California Lyme Disease Association.
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