Saturday, March 10, 2012

Do The Hustle

When the going gets tough, the tough get going - as in 'moving!'  I know that exercising is out of the question for my many Lymies – I mean, everything already hurts just sitting there, so of course it’s going to hurt to get moving.  And it does – but in my experience, only the first few minutes. 

I’ve had more sick days (my chronic Epstein Barr Virus is flaring up, so I’m feeling sick with a side of sick) lately, so I must admit I have not exercised in a few days.  But I did have a good stretch there when I exercised pretty frequently – and let me tell you what I mean by 'exercise': watching The Biggest Loser on Netflix, marching in place, with a can of soup in each hand in lieu of weights – just kind of waving my arms around.  Lifting the knees up when I could for a few steps, stepping side to side, doing maybe one real exercise – bicep curls maybe?  And just doing that (of course with the curtains closed so no one sees me flailing around) for 20 minutes until the egg timer dinged.  The first 5 minutes were pretty headachey and I had to slow down because of dizziness, but after that, it wasn’t bad at all.  I broke a bit of a sweat and got the blood moving around.  And I felt better for the whole rest of the day!  Maybe there’s something to this exercising thing.

For those who aren’t as sick, swimming is a great option – the water takes the weight off your joints, so you can move with less pain.  But at this point, any movement is good.  Even just standing up every hour.  I found this great article – written for non-Lymies – about why it’s bad to sit all day.  I shared it on my Water With Lyme Facebook page a while back and I’ll link to it here, because it is just so good!

And I know it’s part of Dr. Burrascano’s guidelines to exercise – in fact, he says that exercise is crucial to the Lyme eradication plan.  Dr. Burrascano says:  “Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.”

To read more about Dr. Burrascano and his ILADS-based guidelines, go here:

Plus, it's nearly spring!  So do the hustle everybody!  Get up!  It’s fun!  It’s free! ;)

Monday, March 5, 2012

March Madness Campaign

'Unless someone like you cares a whole awful lot,
nothing's going to get better.  It's not.'  ~ Dr. Seuss, The Lorax

Are you someone who cares a whole awful lot about the lack of proper treatment for Lyme sufferers?

Many, many Lyme sufferers are made bed-bound, wheelchair-bound, blind, or worse by this debilitating disease.  Perhaps the worst part is that many are ignored, mocked, and left to suffer and die by their own doctors who tell them chronic Lyme does not exist and that what they need is psychiatric help.  

Help us storm the gates of Congress at this outrage!  Help us demand the current IDSA guidelines on Lyme be overturned.  

Thank you to Lucretia Perilli, Alan Burdge, Lisa Hilton, Tammy Hildebrand, Timothy Grey and all involved in getting our messages much needed Congressional attention.  

Please 'Join' the Facebook Event page 'Lyme Disease: MARCH MADNESS CAMPAIGN' here:  

For those of you without Facebook, here is what it says:

MARCH MADNESS CAMPAIGN – It’s now March 2012 and we are angry and appalled (NOT crazy)!


PHASE 1: On January 4, 2012, the Infectious Diseases Society of America (IDSA) posted this question on their Facebook wall: What would you like to see from your society in the coming year?

Though the question was intended for the IDSA’s professional membership, people stricken with Lyme disease and their loved ones here in the US and abroad took notice, seeing it as one of the few opportunities that we’ve ever had to make our voices heard directly to the IDSA (and the world) regarding the outdated, inaccurate and corrupt IDSA Lyme disease Diagnostic & Treatment Guidelines.

PHASE 2: We continually gathered the comments and created a nearly 300 page document, took up a collection, and had 65 copies printed and bound to take directly to Washington, DC.

PHASE 3: On Tuesday February 21 and Wednesday February 22, Lyme patient activists hand-delivered these copies to US Congressional representatives on Capitol Hill in Washington, DC. Also, the document, in its original book format, is now being posted and shared throughout the internet.

PHASE 4 – MARCH MADNESS!: We need you to call the offices of the US Congressional members listed below. They all now have a copy of the document. The more members you call, the better. The more members you call, the more impact we will have.

Suggested talking points for your calls:

- Rescind the antiquated, inaccurate, and corrupt IDSA Lyme disease Guidelines.
- Push for the passing of Senate bill S 1381: Lyme and Tick‐Borne Disease Prevention,
Education, and Research Act of 2011
House bill HR 2557: To Provide For the Establishment of the Tick‐Borne Diseases Advisory Committee.
- Demand that doctors in every state are no longer threatened with license removal and other penalties for treating Lyme disease patients.
- Insist on better education of the entire medical community in every state regarding acute AND late-stage Lyme disease.
- Demand that a Congressional Briefing be held so that Lyme patients and our advocates get a fair chance to expose the decades-long corruption and special interests surrounding Lyme disease recognition, diagnosis and treatment.
- Be sure to tell your own personal Lyme story and the devastating impact that this illness has had on you and your loved ones.

Here is a link to the IDSA Comments document, which is entitled:

The Devastation of Lives and Lies:
Those with Lyme disease and related chronic infections respond to the
Infectious Diseases Society of America's (IDSA's)
request for comments.

January 4 through February 7, 2012:



If you would like to contact other US Congressional representatives who are not on the list below, please use these helpful links to quickly and easily find their contact info:



Harry Reid (D‐NV), Senate Majority Leader
(202) 224-3542

Mitch McConnell, (R‐ KY) Senate Minority Leader
(202) 224-2541

Eric Cantor (R‐VA), House Majority Leader
Virginia 7th District
(202) 225-2815

Nancy Pelosi (D‐CA), House Minority Leader
California 8th District
(202) 225-4965

John Boehner Speaker of the House
(202) 225-6205

Steny Hoyee Dem Whip
(202) 225-4131

John Larson Dem Caucus Chairman
(202) 225-2265

US Senate Committee on Health, Education, Labor & Pensions
Main Office:
(202) 224-5375

Tom Harkin (IA) *
(202) 224-3254

Barbara A. Mikulski (MD) *
(202) 224-4654

Patty Murray (WA) *
(202) 224-2621

Bernard Sanders (I) (VT)
(202) 224-5141

Robert P. Casey, Jr. (PA)
(202) 224-6324

Kay R. Hagan (NC)
(202) 224-6342

Al Franken (MN)
(202) 224-5641

Sheldon Whitehouse (RI)
(202) 224-2921

Richard Blumenthal (CT)
(202) 224-2823

Richard Burr (NC)
(202) 224-3154
Rand Paul (KY)
(202) 224-4343

Lisa Murkowski (AK)
(202) 224-6665

US Senate Committee on Appropriations
Democratic Subcommittee Members:

Tom Harkin (IA) *
(202) 224-3254

Senator Herb Kohl (WI)
(202) 224-5653

Senator Patty Murray (WA) *
(202) 224-2621

Senator Mary Landrieu (LA)
(202) 224-5824

Senator Jack Reed (RI)
(202) 224-4642

Senator Sherrod Brown (OH)
(202) 224-2315

Republican Subcommittee Members:
Senator Richard Shelby (Ranking) (AL)
(202) 224-5744

Senator Kay Bailey Hutchison (TX)
(202) 224-5922

Senator Ron Johnson (WI)
(202) 224-5323

Senator Lindsey Graham (SC)
(202) 224-5972

Additional Govt. Officials Concerned with Lyme Epidemic:
Scott Brown (R‐MA)
(202) 224-4543

Susan Collins (R‐ME)
(202) 224-2523

Tim Holden (D‐PA)
Pennsylvania 17th District
(202) 225-5546

Chris Gibson (R‐NY)
New York 20th District
(202) 225-5614

Kirsten Gillibrand (D‐NY)
(202) 224-4451

Frank Lautenberg (D‐NJ)
(202) 224-3224

Carl Levin (D-MI)
(202) 224-6221

Joseph Lieberman (I‐CT)
(202) 224-4041

Robert Menendez (D-NJ)
(202) 224-4744

Frank Pallone (D-NJ)
(202) 225-4671

Rand Paul (R-KY)
(202) 224-4343

Ron Paul (R-TX)
(202) 225-2831

Marco Rubio (R-FL)
(202) 224-3041

Charles E. Schumer (D‐NY)
(202) 224-6542

Christopher Smith (R‐NJ)
New Jersey 4th District
(202) 225-3765

Patrick Toomey (R-PA)
(202) 224-4254

Sheldon Whitehouse (D‐RI)
(202) 224-2921

Frank Wolf (R‐VA) - Virginia 10th District
(202) 225-5136

* Denotes members serving on multiple committees

Sunday, March 4, 2012

Here fishie, fishie, fishie

I talk a lot about eating fish for Lyme.  Here’s a little bit about why!  Fish is one of the highest quality proteins you can get – and it is pretty clean, not typically pumped so full of antibiotics, corn, and manure.   It is also a more alkaline option, helping reduce the acidity in your body’s environment.  The more acidic your insides, the more prone to pain it’s going to be. 

I know fish is more expensive, but any way you can, eat fish!  Sardines are a great, cheap option.  It really ought to be wild-caught (this means caught out in the wild, at sea).  The converse is farmed (this means raised off-shore in a huge netted cage and fed corn and antibiotics).  Many people are also concerned about mercury-levels in fish and for good reason.  Mercury is a heavy metal that accumulates in the body and can wreak havoc on your neurological system (sound familiar, Lymies?).   When it comes to mercury-free fish, there are two things to consider.  1) The smaller the fish, the better.  The rationale behind this is based on a process called biomagnification.  The higher you get up the food chain, the more concentrated the mercury becomes.  Example: sardines are eaten by the bigger halibut, who are eaten by the bigger tuna.  So that tuna has all the mercury in the sardine and in the halibut.  The other thing to consider, 2) the type of fish.  There are some fish species that are more likely to have higher levels of mercury in them.  Here is the list (it’s very pretty and short, even though the link to it isn’t):,r:0,s:0

So while it’s best to get fish that has the least amount of mercury, don’t forget that there are more sources of much higher exposure to mercury.  Consider that the World Health Organization says that the highest risk of mercury exposure to humans is dental amalgam (those silver-looking fillings for cavaties) "exposing the concerned population to mercury levels significantly exceeding those set for food and for air." Here's link to what the WHO has to say.

My take is that you should do your best to eat fish less contaminated by mercury, but not to fret too too much.  Especially if you have amalgam fillings (like me).  Those are exposing you to much more mercury on a much more consistent basis than fish.  To get your amalgam fillings removed, you need to find a dental office that specializes in this, as your regular dentist office probably doesn’t.  And they will probably tell you that dental amalgam is not a source of mercury exposure since that’s the American Dental Association’s stance.  (Hmmm, an American association telling you that you don’t have to worry, it’s not real?  Why, you don’t say…)

Now back to fish.  Aside from being an all around good protein, fish is also rich in fatty acids that your body needs for many functions – from immunity to good, healthy skin to brain function.  It’s just a high quality, nutrient-dense food, a much better option than beef or even chicken.  Plus, Jesus ate a lot of it.  So that’s gotta be a good thing – the food of the Gods then, right?  (Hehehe)

I’m not a huge fan of the taste of fish – and most people probably aren’t either.  The key is: lots of lemon juice, lots of pepper, and a new one I just discovered – lots of dill.  Or you can start with smoked fish – smoked fish is soooo yummy, probably because it doesn’t taste much like fish anymore.  Also, eat fish with a side dish you like – like steamed broccoli or something.   Having a solid side dish of veggies that you know you like is really good for the in-between bites of fish.  Sauteed onions is great, if you like onions – the taste is so strong, it will really help mask the fish taste. 

I wrote a haiku in honor of fish.

The scaly fish swims.
Cold, clear, crisp water flows fast.
Nature feeds me well.

(Hahhahaha…I’m just tickled with my haiku attempt.)