About six weeks ago I got a nasty wake-up call. My Lyme symptoms began to return. To cut to the chase, I am getting things under control again slowly, but it's been a trial. 
 
Has that ever happened to you? 
 
"It's a rotten deal" to quote my dear old auntie, but it's more than that. I'm trying to keep the perspective that most of all it's a powerful reminder about the importance of staying firmly rooted in my healthy routine. 
 
I forget that I share my body and mind with a bunch of Lyme bugs. When I've got the situation under control, I kill them off slowly and without too much herxing, they don't act out, and I feel good. I can think and talk and walk and work and live and love, just like I was designed to do. The problems start when I forget (as I did six months ago) about the delicate balance I've got going on. Last year I was feeling so incredibly good, so Lyme-free, that I slowly let little things slip. I re-introduced some sugar into my diet. I let myself indulge in a beer now and again -- figuring it's got protein, B vitamins, minerals, magnesium, selenium, iron and it's a stress-buster in reasonable quantities. After all, I rationalized, it was surely not a recipe for disaster, right? 
 
But then, following a few months of slippage, the perfect storm hit. 
 
Literally. Our region was hit by snow-pocalypse in mid-December, leaving us without power for several days. It was cold. I was cold the whole time. We were snowed-in for over three days. My partner was dealing with a health concern of his own, which stressed us both out as we could not get out to get what we needed. In addition, I'd been sick with a flu prior to the storm, so my exercise routine was interrupted. I'd stopped taking a few of my mainstay supplements, and other stuff...you get the picture. When the snow melted and the power came back on I began to make up for lost time (or so I thought) by exercising twice as much, even introducing African dance classes into the mix, which, if you've ever done, is quite the workout! 
 
Anyway, the symptoms have had a hay-day with me, the bugs have been partying, and I'm finally, but ever-so-slowly returning from the brink of a really painful six-week herx. My worst since I was first diagnosed in 2005. 
 
The point is, we each have to determine what the right healing path is for us. For me, the two biggies are keeping up with my supplements and herbal therapies and not slacking on a sane amount of exercise. Also, it's about staying warm, as my body temp runs low, which is typical of people with a Lyme infection. Through trial and error I've also figured out which other things contribute to my personal homeostasis. 
 
And I'm freshly vigilant for the Lyme bugs, who have somehow not quite managed yet to eat my common sense (completely). I'm not going to slip again. 

Pro bike racer Darryl is counting the days to an upcoming race in April. Twenty-one months of hardcore antibiotic treatment are now behind him, including IV Rocephin, Zithromax and a go-round of Flagyl and Mepron last summer. 
 
Since this new chapter of life began, Darryl counts among his athletic successes the "Beach and Back" event, a twenty-six mile, grueling uphill bike course that kept him "in the saddle" for four-and-a-half hours. I don't know about you, but I can hardly stay seated for more than one hour, and that's without peddling of course, without having to stretch and take water breaks. You can hear the surprise in his voice, and the satisfaction at his accomplishment as he describes the effort it took to finish that race. 
 
Darryl's impressive athletic achievements are no accident. A self-described "numbers guy," he has long been a devout record keeper, tracking his heart rate and other bodily systems with the eagle eye of a master coach. In fact, he is a coach, and takes his role seriously. A handful of Lyme patients have been lucky enough to come into Darryl's orbit, and he helps keep them on track with their Lyme-related needs. Knowing the hell that awaits someone with a positive diagnosis of Lyme disease, he aims to mitigate the bureaucratic and other various challenges that await them. 
 
Some of Darryl's key points for beating Lyme:
 
Be a warrior. Don't allow anything to stop you from seeking treatment. Darryl saw 35 doctors before receiving a positive diagnosis for Lyme. He is passionate about standing up for yourself in the face of stubborn insurance company policies. His advice when your insurance company refuses to pay for tests and/or treatment that you and your doctor know are necessary? Appeal, and stay with it. Do not give up the fight. If you can't do the fighting, get someone who can fight for you until you can. 
 
Be organized and monitor your progress. Keep your medical files together in one place. Statistics such as test results, enzyme counts, heart rate, weight and the dates of measurement are important, and so are their fluctuations. I love this--Darryl uses spreadsheets to track his numbers. Why didn't I think of that? Carefully monitor your progress. Keeping track of meds, supplements and foods on a spreadsheet is a great idea too. 
 
Put yourself first. We hardly even need to mention this one. While it seems like such an obvious point, it is nevertheless quite difficult for a lot of people to pull this one off. Are you the main caretaker for a busy family? Find a way to take time for yourself every single day. Get enough sleep. It takes whatever it takes to get well. Your family might have to adjust, but rest assured they'll be overwhelmed with relief when you get better. 
 
And finally, exercise, exercise, exercise. That's a direct quote. Even Darryl's mom (who also has Lyme) rides the bike he gave her indoors, in front of the telly. Do what you can to sweat out the toxins every day. Build muscle, which will help your immune system build strength. Darryl addresses this whole issue of exercise with compassion for those of us who suffer with crushing fatigue. He's been there too. 
 
The really, really great news? Darryl's better! 
 
Get your water bottle, jump on your stationary bike, hop onto your mini-trampoline and put on your headphones. Listen to Darryl's interview here. 
 
Listen to the entire interview with Darryl for free!

Podcast - This is a long interview, so it may take awhile to load, please be patient.

The media is having fun commenting on the end of the Ought decade (or the Naught, or the Naughty, depending on whatever appellation you choose). One decade comes to a close and another begins. 
 
We're always smarter in retrospect. Looking at back at this decade as if it were a pack of cards that can be ordered, and reordered or shuffled around as you like, it's very easy to see where things went off track. Or got back on track. 
 
Thank you for your support and your notes of kindness. We wish you a very Happy New Year, and most of all we wish you health. It really is the most important thing. 

Lyme is an inflammatory disease. Following an anti-inflammatory diet can help reduce pain from many Lyme symptoms, such as rheumatoid arthritis and skin rashes.

In some stages of Lyme, you may not feel much like eating, or you may not know what to eat at all. Everything is so different, even your taste for certain old favorites. If you've altered your diet because of Lyme, sometimes you really just crave "normal" food.

Chili is hearty and healthy. It's nice and normal, and one of our favorite comfort foods around here. Here's the basic recipe. Trust me - it's simple and won't make you think too hard. Plus, it'll make your house smell great. Sometimes I switch out the peppers for carrots, or skimp on the chili powder. The herbs are the key to making this dish really scrumptious and satisfying. Add some simple corn bread and you've made a wonderful winter dinner.


Vegetarian chili

Ingredients

2-3 cans dark red kidney beans (drained)
2 stalks celery, chopped
2 onions, chopped
2 green peppers, chopped
2-3 T olive oil
1 28-oz can whole tomatoes
3-4 cloves garlic
3-4 T chili powder
2-3 T cumin
1-2 T fresh parsley
2-3 T oregano
1 1/2 cups of water
1 cup cashews
1/2 cup raisins (optional)

Heat oil in large pot; saute onions until clear, then add celery, green pepper, and garlic; cook for 5 minutes or so. Add tomatoes (with juice; break the tomatoes into small chunks) and kidney beans; reduce to simmer. Add chili powder, cumin, parsley, oregano, water, cashews, and raisins (opt.) Simmer as long as you want. Garnish with fresh parsley or grated cheddar cheese (if you like cheese, try goat, which is easier to digest).

Happy Winter Solstice to everybody.

Here's to your health!

Erol Fikrig, MD, and other researchers at the Yale School of Medicine may be hot on the trail of creating a new Lyme vaccine. 
 


What makes this Lyme vaccine different from the one that was taken off the market in 2002? 
 


From a recent post on Science Blog: 
 


"Traditionally, vaccines have directly targeted specific pathogens. This is the first time that antibodies against a protein in the saliva of a pathogen's transmitting agent (in this case, the tick) has been shown to confer immunity when administered protectively as a vaccine." 
 


Apparently the old Lyme vaccine "utilized just the outer surface proteins of the bacteria."

"The authors [of this study] believe this new strategy of targeting the saliva - the 'vector molecule' that a microbe requires to infect a host - may be applicable not just to Lyme disease but to other insect-borne pathogens that also cause human illness."

"We believe that it is likely that many arthropod-borne infection agents of medical importance use vector proteins as they move to the mammalian host," Fikrig explained.

If their scientific hunch proves correct, this study may also have positive implications for treatment of other illnesses that are spread by insects.

"Currently, we are working to determine if this strategy is likely to be important for West Nile virus infection, dengue fever, and malaria, among other diseases."

Dr Charles Ray Jones is a man with three ordinary names - yet he couldn't be any more extraordinary in his service to chronically ill patients, the children he treats every single day.

A reader sent a note last week that brought tears to my eyes -- the joyful kind.

Here is part of her note:

"My 11 year old is now under the care of Dr. Jones and is making incredible progress in his path to wellness. I appreciate what you are doing. Thank you for being willing to get the word out. What a frustrating journey this has been but I finally have my medical support system in place. It took a while. I was told by an infectious disease specialist in Maine that I was crazy and that my son was perfectly healthy. Dr. Jones is a saint and he has given my little boy his life back. He is again running and climbing trees and happy and bubbly...a far cry from last year at this time. I wish all of you the best and again, thank you. Have a wonderful Thanksgiving."

Unfortunately, too many moms can relate to being told by a medical professional that there is nothing wrong with their kid, when the reality is that if Lyme bacteria is present, treatment could restore the child's health (and the mother's sanity).

Dr Jones has been called (by a colleague of his), "an international treasure - a courageous, selfless, inspirational, and outstandingly gifted clinician who has helped thousands of the most severely ill children with Lyme disease from around the world to regain their health and their lives."

Dr Jones talked with me a few weeks ago, about Connecticut Governor Rell's June 2009 decision to allow doctors to treat Lyme disease. He also talked about the significance of the recent IDSA Lyme treatment guidelines hearing in Washington, DC, and the future of Lyme disease treatment.

Listen to our brief conversation.

"Kmart" sent these comments in response to last week's post:

1 - I once lost my truck key on the job (gardener). I had three people (customers), for thirty five minutes, looking all over their house and property for it. I must have checked my pockets thirty times and even flipped out my front pockets like a rabbit. Yes (you all have done this) while just standing in confusion & embarrassment my stomach fluttered & face grew red as I had to suddenly admit that I found my key in my right front pocket while casually just standing there. Oops, my bad. There is still no way to explain lyme brain to others.

2 - Having read through the protocol, how in the heck is someone with stage 3 suppose to remember all that? I believe any attempt (at a protocol) is a good one for fighting Lyme. Seriously, there is no way I could stay on this as I am still looking for my keys!

***

Success stories usually, if not always, follow failure. The classic example is learning to ride a bike. If it took falling over nine or ten times before you finally got the balance thing down, than those nine or ten times were more about succeeding than failing.

Healing from Lyme has been sort of like that for me. Starting with getting a diagnosis, which doctors kept getting wrong. I've talked to people for the success stories who said that they went to more than 30, or in some cases more than 40 different doctors before getting a correct diagnosis!

It still makes me shiver to think about the dermatologist who wouldn't even look me in the eye while he was examining my skin rash. I'd brought in a notebook with questions I had jotted down, because I knew I wouldn't be able to remember them unless I wrote them down. The minute I opened it and read my first question, he stopped making eye contact with me! It felt as though he saw me as some sort of weirdo to protect himself against. I absolutely did not feel like I was in the supportive hands of a healer. Of course, it didn't help that I stuttered terribly whenever I tried to talk. He was one of the docs who had prescribed prednisone for my "excema." He was sure he was right. I was sure I was getting worse, not better. At that time I had no clue that the medicine itself was making my disease spread inside my body and brain, quickly rendering me unable to think, talk or keep my balance while walking.

Lyme brain can definitely be funny in retrospect, but I know it's absolutely terrifying when you've got it.

Whether your stories are humorous or scary (or both!), I invite you to share one of yours here. You can either email me directly: ldrd.support@gmail.com or put it in the comments.

All good wishes for healing to every one of you,
Suzanne


P.S. Kmart, I know what you mean about remembering the protocol. I kept notebooks full of schedules for when to take which antibiotic or supplement, to take it before meals, between, whether to take it with water or juice, or put it under my tongue, and how many drops of this and that, when to increase or decrease...It got to where I was either taking a medicine or writing about having taken it. Having Lyme is hard -- but healing from Lyme can be just as tough!

Under Our Skin filmmaker Andy Abrahams Wilson discussing his film on The Wrap.

I have to laugh now, because in retrospect it's funny, but at the time it was embarrassing. It's a memory of my interview with Andy, which I conducted a few years back before the Turn the Corner Foundation stepped in to help fund his film. I'm sure he didn't think much of the incident.

In our conversation, Andy was very gracious. He spoke eloquently about his sister's trouble with Lyme disease, and later, his feeling of helplessness when a close friend of his then discovered she also was suffering from late-stage Lyme. He'd been so moved to do something about the misunderstandings around Lyme symptoms and Lyme treatment, that he entered into the long process of making Under Our Skin, which is still gaining ground and helping the Lyme community to get the word out.

The embarrassing part was that in interviewing him, I couldn't get my phone recording equipment to start correctly. Lyme brain was so intense at the time for me, that I couldn't fix the problem. I had to hang up and call him back. I was too proud to admit that I was having a hard time that day. I couldn't tell whether it was the equipment or me who was glitching. However, Andy was incredibly kind and generous, and allowed me to reschedule our talk for later that day.

It wasn't the first time that had happened. A month earlier, I'd gotten through an interview with Dr Christine Horner, but I could barely hear her the entire time. My tinnitus was roaring, but that wasn't it. It was that awful, foggy Lyme brain again. It took away my ability to multi-task and hold two thoughts at a time. Normally I'm a fairly good troubleshooter, but there was no way I could troubleshoot and conduct an interview at the same time. It didn't even occur to me to ask if we could reschedule. When the interview was complete I hung up, and discovered that I'd put my earphone in backwards. No wonder she'd sounded faint the whole time.

These are not pretty memories.

However, remembering the bad times allow me to measure how far I've come back into balance. Using my brain is one of my favorite hobbies. I guess I'm grateful for all my Lyme experiences now, since I've come out on the other side, and can actually work my recording equipment pretty smoothly again...usually.

What about you? Care to share a Lymie memory? Please share your story in the comments!

This is Veteran's Day. Let's take a moment of silence and give thanks to all the veterans who serve our amazing country. In the UK, November 11 is known as Remembrance Day, and in other countries this is Armistice Day.

This post is dedicated to my dad, who served in WWII in the US Navy. Dad was a radio operator and spent many months undersea, working inside Navy submarines. He and mom raised five kids, and he never lost his love for the ocean. Miss you still, dad!

Harold "Bud" William Arthur (1923 - 1974)

Are you treating Lyme disease symptoms after having received a late-stage diagnosis? The problem for many of us who are healing from Lyme is that we know antibiotics are tough on our systems. While I have no doubt that longer term antibiotic protocols are key in killing the Lyme bacterial complex, I've talked to a lot of people who are either severely allergic to antibiotics, simply can't tolerate them after a long period, or have no health insurance coverage and can't pay out of pocket.

Which leaves us with what alternatives? It's very scary to hear your doctor tell you that in order to treat you for Lyme you must have antibiotics, when you a) can't tolerate them physically, or b), you can't afford them financially.

A friend of mine asked me about Lyme the other day. She'd heard that I'd been very sick and wondered if I was feeling better. It was such a huge pleasure to realize that I hadn't mentioned Lyme once to her, since we met a year or so ago. Speaking from my own experience only, I have found that treatment with a combination of methods, including behavioral changes, nutrition and diet and rigorous exercise has worked really well. Not as quickly as I'd like, that's for sure! But these days I consider myself to be living a healthy, Lyme-free life. In part, I achieved that goal with the help of Dr Cowden's protocol, using Samento and Cumanda and a host of other supplements.

Dr. Wm Lee Cowden says that he has discovered that “antibiotics do seem to work fairly well in a lot of patients. But, if they've had the illness for longer than six weeks, the chance of antibiotics getting rid of the infection, in my experience, is pretty unlikely, pretty remote. So, they're basically just guaranteeing that they'll stay on antibiotics for the rest of their life."

“The problem with staying on the standard pharmaceutical antibiotics long term," he says, "is that you kill off the friendly bacteria in your gut, and you cause an overgrowth of fungus in your gut, so then you trade one problem for another."

(The above quote is from my article on the effectiveness of Dr Cowden's Lyme protocol, in the Townsend Letter - The Examiner of Alternative Medicine, April 2007.)

PROTOCOL FOR LYME BORRELIOSIS From Wm. Lee Cowden, MD

Please also note Dr Cowden's condensed support program, updated February 17, 2009.