Monday, June 27, 2011
Friday, June 17, 2011
Wednesday, June 15, 2011
Saturday, June 11, 2011
Friday, June 10, 2011
TOUCHED BY LYME: When pain is simply unbearable
As a kid growing up in southern California in the 80s and 90s, Bryan Bower was a bit of a daredevil: BMX biking, rollerblading, skateboarding, snowboarding—never a show-off, but always pursuing his jumps and thrills. As a college student, he discovered a new passion, rock climbing. He went everywhere with his new best friend and climbing buddy Rhyan. Joshua Tree, Tahquitz, The Needles and Malibu Canyon were southern California favorites. In his early 20s, Bryan started training to climb Yosemite's El Capitan, practicing with one of those folding ledges that you haul up and sleep on when you’re half way up the 3,000-foot granite face. All that came to a screeching halt about six years ago
when Bryan was struck by a series of bizarre symptoms: debilitating headaches, brain fog, intense pain in his spine and shoulders, night sweats, difficulties with his balance, sleep disturbance and depression. That prompted a series of doctor appointments which, after many twists and turns, eventually led to a diagnosis of Lyme disease. By this time, the infection was deeply entrenched in his brain and central nervous system.
His was a dramatically changed personal landscape. There were different kinds of rocks to climb now, boulders named severe neuro-Lyme, co-infections, and brutal suffering.
He would try different doctors and different treatments through the years, even traveling to Mexico for alternative therapies. Sometimes, he could muster some of that old daredevil energy to dive headlong into a new treatment protocol. Sometimes he couldn’t.
Occasionally, there would be some improvement in his physical situation. When it didn’t last, he’d pour his agony and frustration into the written word, on his blog or in anguished poetry.
Previously a devout Christian, Bryan felt utterly forsaken by the God that had once offered solace and refuge.
In the last few years, Bryan spent most of his time in bed, trying to distract himself from blinding pain that even heavy-duty meds couldn’t relieve. He’d surf the web on his laptop, searching for alternative Lyme treatments while lying on an electro-magnetic mat. He’d keep TV, Netflix, or video games flickering on the big screen in front of him, in vain hope of even momentary diversion from the pain.
Friends and relationships from the past had pretty much fallen by the wayside. His mom and dad gave love and support and tried to lessen the isolation as much as they could.
Yet, nothing he tried could carry him away from the pain. Ultimately, according to his family, Bryan “just wanted the pain to stop.” On May 2, 2011, he ended his own life, leaving his parents to read the following words he’d penned for them earlier.
Don't follow my starlight
It goes well beyond and you must stay
and drift away until you too are gone
- Bryan Bower
I never knew Bryan, but his is the fourth Lyme-related fatality I’ve learned about recently. It makes my heart sick. Wake up, America! Tick-borne diseases are stealing our children. While the medical establishment, insurance companies, and government health officials play politics and pretend that Lyme disease is no big deal, or worse – a complete sham – people like Bryan are abandoned by the institutions that are supposed to help them.
A speaker at the recent webinar on Lyme by the Centers for Disease Control made the astonishing assertion that long-term neuroborreliosis would eventually “resolve” on its own, without any treatment whatsoever. Tell that to Bryan’s heartbroken family. Tell that to untold thousands of Lyme patients who live with intractable pain and other unrelenting symptoms.
The loss of this young man makes me both sad and angry. We in the Lyme community owe it to Bryan and others like him, to channel such emotions into meaningful action. Tick-borne disease is taking a toll on our society that will not “resolve” on its own.
Click here to read Bryan's memorial page with some of his poetry.The TOUCHED BY LYME blog is written by Dorothy Kupcha Leland, CALDA’s VP for Education and Outreach. Contact her at firstname.lastname@example.org.
Thursday, June 9, 2011
It's one thing to have a disease that you know is going to happen to you, you know it only has a handful of side effects. For instance cancer, you have 2 options get chemo
and get better or the cancer quickly overwelms your body and takes your life. Aids, is now a managable disease and you can live a normal life without much complication.
Diabetes which in some cases can be prevented, as long as you keep certain things in check you are good to go. I know their are several other rare disease that make life very
But let me share with my almost 1750 friends what lyme disease and what it does in full. For most patients we do not get diagnosed right away because testing is outdated,
and still using the same methods since the 1970's the CDC and IDSA openly admit that it is not accurate. So how are we left to diagnose this horrible disease? Most diagnoses are done
with some labs, but mostly a clinical diagnoses which often happens to late for many. Several months after getting bitten and contracting the lyme disease it is to late, the general
4 weeks of antibiotics is generally no longer enough and has given the lyme and it's co-infections time to spread to the brain,heart,lungs and central nervous system. At this point the
side effects of the disease and the co-infections can be long. And even in this early stage can be fatal.
Most common in people with lyme is the following:
Mitral Valve Prolapse
Low blood pressure (to the point of constantly fainting)
High blood pressure
unable to perform light tasks and sometimes due to lack of cardiac strenth and fatigue some are stuck in bed. Sometimes for years.
Generalized Anxiety disorder
Eye very sensative to light, normally resulting in the lymie wearing sunglasses all the time.
ears sensative to sound, to the point of always wearing head phones.
Constant ear ringing
Short bouts and issues with uncontrolable rage.
Central Nervous System:
Body pain ALL OVER
weird sensations all over your body
Shortness of breath
Treatment for lyme can be compared to that of which a cancer patient goes through. The reaction to bacteria dying in our body is called the Herxheimer reaction,
The Herxheimer reaction occurs when large quantities of toxins are released into the body as bacteria (typically spirochetes) die during antibiotic treatment.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. The intensity of the reaction reflects the intensity of inflammation present.
Pretty much, all symptoms you experience on a daily basis come out 10 fold. This reaction makes it hard to do treatment cause most times it makes people sicker and puts them in the hospital. While under the care of most
hospitals. They yank them off the meds and call the perscribing Dr. a quack or a nut. This along with several natural methods have been the only way to see any remission
in lyme disease. Remission is very hard to achieve for several reasons. The videos I post below will explain that.
This list is NOT exhaustive and is generally what a person with lyme will experience on a daily basis. From my perspective this is what I deal with daily. I fight to live
and look normal and it is almost a curse cause people assume you are not really sick. It is the curse with this disease. I have no clue why I decided to go off the end
and post everything out tonight on facebook. Rough couple days? Possibly, but this is what we experience. Again, please never any pitty. We just want people to check the facts
and stand by our sides. Do you guys not see people are dying almost everyday from this disease. DO you or will you just sit by and watch it till it effects your family?
Not only do we get sick and our lives come to abrupt stops, then we have to fight with doctors,insurance companies and with all the pilling medical bills and being unable to work
as most lymies can't. We lose all we own. As if being sick was not enough. Who can afford 2-6grand a month for treatment? All we ask is support, spread the word. Take 5 min of your day
to ask someones family who is sick with lyme. HOW CAN I HELP? It doesn't have to be money. Can you write a congressman? Can you send in a story to your local newspaper? Awareness is key.
We don't want to see anymore deaths in this community..
Most of my friends I know that have had this disease, have become humbled and have a true respect for life and each breath. If you take nothing away from this, take that.
Each breath you take, each step you walk, each day you enjoy with your family and friends is a gift. Don't throw it away and don't take it for granted. I know thousands of
people that would give anything for days like that again.
I thank God for my faith, without it I have no idea how I would have made it this far. This is HONESTLY in my eyes the hardest journey a human can walk. Years and years of it.
Please help us fight. Below are some videos, please take the time to understand what this disease is, does and why we are fighting for rights. Thanks and love you all!!
Herx reaction videos:
Videos from News stations: Today show/Good morning America/Local news outlets.
Tons of more links just hit up youtube. MOST OF ALL WATCH Under our Skin. You can watch it on Youtube for 2.99. It is on demand on netflix. It is an amazing and well made
film. Here is the trailer.
Tuesday, June 7, 2011
I am so disappointed! I was doing great in April and then once May hit I started to slowly decline. Now I have definitely relapsed. My babesia is back full force, having night sweats every night, most mornings I have to peel my clothes off and air hunger is back. I think the two worst symptoms of lyme is the air hunger and dizziness. It's so scary when you can't get air in your lungs no matter how many deep breathes you take. So here we go again, dealing with this crap and starting a whole new batch of drugs. I am low on a lot of things, iron, magnesium, calcium...so I am starting some stuff for that too and changing my diet. No wonder I am soooo tired all the time. Today I start a new drug for yeast overgrowth that can really kick my butt and herx and tonight I start another new one for babesia that can also cause me to herx big time. I so don't want to be in that place again, but it means it's killing the bugs. It's just a matter of how hard it hits me and how I am going to get through it.
It's especially hard to be back in this place after doing so well and feeling like I was actually getting better and the hard stuff was behind me! I was 80-90% most days and we were actually planning for our next child. That is the most upsetting part of this whole thing, I can't plan for that anymore. There is no way my body could handle a pregnancy anymore and I am starting some pretty aggressive treatments that I wouldn't be able to take during a pregnancy. My doc and I are also discussing some more treatments that are even more aggressive than what I am starting this week. I will talk about that when the time comes. So, I feel like my life has been ripped away from me again and my hopes and dreams for the future are out the door. I have been really emotional about it and depressed. It just plain old sucks and I have had enough!