Archive for November, 2010

Bartonella

// November 30th, 2010 // 3 Comments » // Ashley's Blog, Links To Other Lyme Site Posts, Re-Posts, www.lymenaide.com

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called “Cat Scratch Fever.” Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms. (1)

It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is “Bartonella-Like Organism” (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families. (1)

It has been said that Bartonella is the most common of all tick-borne pathogens. Indeed, there seems to be a fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However, several aspect of this infection seem to indicate that this tick-associated strain of Bartonella is different from that described as “cat scratch disease”. For example, in patients who fit the clinical picture, standard Bartonella blood testing in commonly non-reactive. Furthermore, the usual Bartonella medications do not work for this- they suppress the symptoms but do not permanently clear them. For these reasons I (Dr Burrascano) like to refer to this as a “Bartonella-like organism” (BLO), rather than assume it is a more common species. (2)

Incidentally, animal studies show that Bartonella may be transmitted across the placenta. No human studies have been done. (2)

Bartonellosis is often mild but in serious cases it can affect the whole body. Early signs are fever, fatigue, headache, poor appetite, and an unusual, streaked rash. Swollen glands are typical, especially around the head, neck and arms. Burrascano suspects bartonellosis when neurologic symptoms are out of proportion to the other systemic symptoms of chronic Lyme. He also notes gastritis, lower abdominal pain, sore soles, and tender subcutaneous nodules along the extremities. Lymph nodes may be enlarged and the throat can be sore. (3)

Bartonella are bacteria that live inside cells; they can infect humans, mammals, and a wide range of wild animals. Not all Bartonella species cause disease in humans. Bartonella henselae causes an important emerging infection first reported in 1990 and described as a new species in 1992. It is mainly carried by cats and causes cat-scratch disease, endocarditis, and several other serious diseases in humans. (3)

Bartonella bacteria are known to be carried by fleas, body lice and ticks. Scientists suspect that ticks are a source of infection in some human cases of bartonellosis. People with tick bites and no known exposure to cats have acquired the disease. People who recall being bitten by ticks have been co-infected with Lyme and Bartonella. More research needs to be done to establish the role of ticks in spreading the disease. (3)

Babesia and Bartonella are not little addendums to Lyme disease, but are often far more serious than Lyme disease. Any physician who is not well-versed in these two killing infections perhaps should not be considered competent enough to treat patients with flea and tick infections. These infections do not circle around planet “Lyme” like small moons, instead, they are their own huge planets that cause massive consequences to the human body. (4)

In my experience (Dr. Schaller), Bartonella is profoundly agitating and causes all possible psychiatric troubles. Some patients feel like they have gasoline in their veins and are highly reactive and grossly sensitive. I also believe Babesia and Lyme disease, to a lesser extent, can also cause very diverse psychiatric troubles. (5)

It is important to realize that Bartonella is not rare. It is all over the world and only those living in the polar ice caps are immune to the risk of infection. I (Dr. Schaller) personally believe based on newer and more aggressive testing that it is more common than Lyme disease. Many are falsely diagnosed with Babesia because they are tired and fatigued, and yet this is a highly common symptom of Bartonella reported in vast numbers of studies. It is a major contributing infection to chronic fatigue and Fibromyalgia symptom clusters. (6)

You should appreciate that it is unlikely you will ever be cured of Lyme in the presence of Bartonella. Why? Bartonella is a massive immune suppressing bacteria. It can float attached to Red Blood Cells in vast numbers and not even cause a cold or fever. Just imagine, bacteria are floating in your blood and you might not have any fever at all! If you had Staph or Strep in your blood at these levels you would likely be dead in 48 hours unless you were pumped full of antibiotics in an ICU. So how is it this huge elephant floats in vast numbers and causes no severe fever and no disastrous signs of deadly sepsis—infected blood throughout the body with massive inflammation. It is because it has ways of shutting down the immune system. It violates many rules of bacteria behavior and this is one reason it has been so seriously missed until recent years. (6)

Treatments include-
ceftin, ciprofloxacin, mycobutin, levaqin, septra, doxycycline, omnicet, cumanda, clove bud oil, houttuynia, banderol

Symptoms-
ice pick like headaches
photophobia
anxiety
reflex sympathetic dystorphy
cardiac problems
gut problems
plantar fascial pain
burning pain
night sweats
weight loss
neurological symptoms
foot pain, sore soles
enlarged lymph nodes
rash that looks like red or purple stretch marks PHOTOS
cold hands and feet
intestinal infection
blood thinkening
sore throat
agitation
insomnia
confusion
lower abdominal pain

Related Posts-
BABESIA

1. http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=062704;p=0
2. http://www.lymediseaseresource.com/BurrGuide2008.pdf
3. http://www.lymedisease.org/lyme101/coinfections/bartonella.html
4. http://lymeinfo.wordpress.com/2009/04/13/ignore-bartonella-stay-ill-lose-a-relationship-job-or-hurt-an-organ-part-1/
5. http://www.personalconsult.com/articles/violenceandlyme.html
6. http://74.125.155.132/custom?q=cache:4mhxB9XO9igJ:www.personalconsult.com/bartonella/bartonellaignored.doc+Bartonella&cd=1&hl=en&ct=clnk&gl=us&client=google-coop-np

Lymenaide Holiday Bazaar November 29th Featured Artist – Sharon Rainey

// November 30th, 2010 // No Comments » // LymeBites Blog, Lymenaide Holiday Bazaar, www.lymenaide.com

sharon 1The Featured Artist for Monday, November 29th for the Lymenaide Holiday Bazaar is Sharon Rainey!  Included with her being Featured Artist there is also a giveaway involved of her recently published book, ‘Making A Pearl From The Grit of Life’.  I for one have this book, and am reading it now and truly enjoying it.  Inspiration is priceless, and Sharon’s ability to inspire through sharing her story is inspiring.

Please head over to the bazaar, check out our Featured Artist and enter the giveaway for a copy of Sharon’s book!  Read Sharon’s story and find out how to enter to win the giveaway at the Lymenaide Holiday Bazaar Featured Artist!!

Remember, all of the artists in the bazaar are people who support themselves or their treatment because they have Lyme, or a loved one of someone who has Lyme, and is supporting the Lyme community.  This holiday season we have a great opportunity to support those that need it, while also getting some very exciting and creative gifts…for people on our lists AND for ourselves!!

Help support the Lyme Community!

sharon book jpeg

If A Tree Falls In The Forest And I’m In Bed Suffering, Do I Care If Anyone Heard The Tree Fall? Nope

// November 29th, 2010 // 5 Comments » // Eric's Blog

It’s been quite a while since I’ve written anything on here, other than sharing information about the Holiday Bazaar, Lyme support groups etc.  I feel like everyone just knows what’s going on because so many of my friends and family are on Facebook, where they hear on a daily basis what’s going on.  I figured it’s time for an update on my journey, my treatment and the rough spots I’ve gone through over the past few months, which will also explain why I haven’t been writing as much, or as active in things as I’d like to be.

I am blessed with the ability to see an amazing LLMD.  It’s been 13 months with him, and with each month my confidence in his abilities increases.  It seems time after time when something goes “wrong”, he has an idea what it is, puts a plan in action, and each time he’s been right.  Here’s a basic idea of the past few months.

I’ve been on IV antibiotics now for 10 months.  While improvement was slow, it was definitely helping with a lot of the neurological problems I began to experience last year (including loss of memory of anything before Christmas).  Those who know me also know I do not like Christmas, I think some people think this might be a good excuse for me to just block out the holidays.  I wish it were that simple!  But it was a real shock to me when I suddenly didn’t remember anything for the weeks leading up to Christmas last year.  This comes and goes.  Some days I remember things, others I don’t.  I don’t put much faith in it at the moment, as I believe when I’m better it will all be back, and I won’t have to worry about it.  But that was the beginning of a bunch of neuro issues that landed me with a PICC line in my arm and beginning IV antibiotics.

It is generally accepted that Lyme bacteria take 3 different forms.  The 3rd and most resistant form is the cyst form.  ”Cyst busting” is the term used by many of us when we begin any form of treatment to attack and break down the bacterial cysts.  In this form the bacteria remains protected, and antibiotics are of no help because of the protection the cyst provides the bacteria.

My first round of pulsing a cyst buster was not a good one.  (Pulsing basically means being on a medicine for so long, then off for so long, then back on it.  With the cyst buster I did 2 weeks on, then 2 weeks off.)  I had a die off reaction as the cysts broke up that became quite serious.  Until this point I didn’t realize a herx reaction could be not only dangerous, but lethal if strong enough.  This threw me off course, and I spent a couple of weeks recovering from such a brutal herx reaction.  Our plan was to continue cyst busting after I had recovered, but at a much lower dose.  The fact I was reacting let the Dr know that there was still a lot of bacteria left in my body that needed to be killed off.

But I suddenly began getting sicker before being able to start another round of cyst busting, it was my old friend Bartonella again.  (Ashley has a posts on each of the co-infections which she will be sharing in the next few days for more info on each co-infection.)  I have 2 co-infections that I received along with Lyme disease, Bartonella and Babesia.  Often the co-infections are worse than the actual Lyme, and treating Lyme is impossible if you’re not addressing the co-infections that often go along with Lyme.  It was clear from my symptoms it was Bartonella.  Because of the medications I was already one, we went for an herbal treatment instead of antibiotic, and it worked wonders for me.  Within 12 hours my severe Bartonella symptoms started to subside, and as I continue to take the medication I continue to be fine without any more complications from Bartonella.  Problem solved, back to the plan.

Back to cyst busting we went, only this time at a much lower dose.  I still reacted strongly…much too strong for the low doses of medication.  We did two rounds of pulsing until during an exam the Dr noticed my other co-infection, Babesia, was rearing it’s ugly head again.  He put me on a 7 day course of anti-malarial medication (Babesia is similar to Malaria), and within 3 days I was sicker than I had been since the beginning of all of this.  Each day I got worse.  Babesia is the least favorite of my infections.  The symptoms are brutal, headaches, inability to get enough air, nausea, vomiting, heat flashes and cold sweats, all the things that make it impossible to function at any level.  With only 7 days of medication I was sure I’d start to feel better at the end, but instead I just kept going downhill.  It was clear I was having a die off of the Babesia bacteria, but my body was not handling it well at all, in fact the neurotoxins created in my body were making me dangerously sick.

It took 8 weeks for my body to recover from that 7 day course of medication.  During that time we reduced my IV antibiotics to 4 days a week instead of 7, while my body worked towards returning to a baseline of where I was before things went downhill.  At this point I had my next appt with my MD, and he came to the conclusion my immune system has become hyperactive.  I guess that’s progress in a way since it wasn’t long ago I had no immune system, or one that wasn’t doing it’s job.  Now it has begun to do what it is supposed to do, but it’s doing it in such an exaggerated way that week after week I just feel worse and worse.

As always the Dr had a plan.  Because it’s clear I have an issue with the Babesia, I was put on a natural remedy that is showing great promise for many other patients with Babesia.  A normal dose of 15 drops was too much for me to handle, our goal was to get me to 3 drops at a time.  I started with 2 and within 2 hours was full blown sick with all of the Babesia problems again.  The nausea was back, the hot flashes, the headaches.  But within a few days my body adjusted and I’m not up to 3 drops at a time without having a reaction.  Taking it slow, and at low doses is giving my immune system to rest a little and hopefully get back in whack.

For now I’m doing the IV just 2 days a week.  The antibiotics also put the immune system to work, it’s not just the bacteria.  So pulsing the IV meds and giving my body 5 days a week without the IV is another attempt at giving my immune system a break.

It’s been a week now since the new plan went into motion, and with a very detailed symptom journal I can say I’m almost back to baseline, which is where I was 3 months ago when I was still seeing improvement.  But it’s frustrating, because every step of the last 3 months has just slowed down my treatment, made the light at the end of the tunnel seem so much further away.  I worry if my immune system is going to respond like this from here on out, how will I treat these diseases without being so sick I can’t ever leave bed?

The past 3 months have taken a huge toll on my body and my mind.  I look at myself in the mirror and I look like I’ve aged 10 years.  I see a ghost of the person I used to be.  There were many times in the past 3 months I thought I might die.  There were many times in the past 3 months I wished I would die.

But the fight goes on.  Frustration is part of the process, and I can’t let myself focus on the slowdown of my treatment, but just on putting everything I can into what my body needs right now in order to heal.  Patience is not a strong point of mine, and 18 months into treatment is not making being patient any easier.  But I can’t get there, without being here.

My involvement in friends, family, Lyme awareness, this website, the Lymenaide team…all of it has suffered dramatically over the past 3 months because of the lows I’ve hit.  My good days now are the equivalent of a bad day a few months ago.  But I keep reminding myself I have to get worse before I get better.  Boy how I appreciate any times I feel any relief from my symptoms, because of how much I’ve suffered in addition to my regular issues over these past few months.  You can’t truly appreciate the sweet unless you’ve had the sour.  I’m thankful all of this will give me the opportunity in the future to really appreciate the good.

So there you have it, a brief (but long winded) synopsis of the past 3 months.  An explanation why I’ve been getting worse instead of better, and also as to why I haven’t been as active as I want to be, or as diligent with this website.

I still see that light at the end of the tunnel.  Some days it’s bright, others it’s a pinpoint of light I wonder if I’ll ever reach.  But the light is always there, and I continue to reach and pull myself towards it.  I WILL get through this.  Each day I survive I’m amazed at what I can handle, and what I can put my body through.  After 18 months of this, I’m more determined than ever to keep up the fight and reach the light at the end of the tunnel, and when I do I plan on embracing that light and never letting go.

To my Lyme friends struggling right now.  I want you to know you are not alone.  I am not alone.  I have not been alone in all I’ve been through in these last 3 months.  While friends and family are there to support, to have those who understand and are going through the same thing by your side makes all the difference in the world.  Reach out to the Lyme community.  There are thousands of us out there, all fighting the same fight, but at different points in our journey.  But we’re working together to create a community of support.  I’ve learned I have to rely on these people for hope, help, and happiness in this fight for my life.  No matter how dark today is, remember there is always a tomorrow.  You are not alone, use the wonderful network of Lyme patients that we have created.  There is so much love in the Lyme community, it’s there for the taking.

I also want people who see me as a positive person, always laughing through my sickness, or turning negative into positive to know that’s not always the case.  I have hit some real lows in the past few months.  Some of you have seen the depths to which I have gone, many have not because I try not to bring negative energy to Facebook and other social media outlets.  I am no different than any of you.  I choose each day whether to let Lyme win, or whether to fight it.  I choose each day whether to laugh, or to cry.  Our symptoms may vary, the degree of our illness may vary, but we are all the same.  We each lose ourselves to this disease throughout the journey, and at those times is when we most need to reach out.  So each of you know, I struggle as much as the next person, I may try to laugh it off and turn it into positivity, but that doesn’t change the pure hell of what I go through.  If you’re someone who says to me “no matter what you have a great attitude, I couldn’t keep that up because….”, then I want you to know you’re wrong.  The choice is yours.  We can’t control what happens beyond ourselves, but we can control ourselves.  Please understand this is all part of the journey.  I hate what has happened to me in the last 3 months, but it will only make me stronger.  I choose to see the good that can come out of it, not the hours of torture I’ve endured.  I invite all of you to make the decisions in your life…will things dictate how you react to things in life?  Or will you dictate how you react to things in life?  It’s up to you.

Lymenaide Holiday Bazaar Update – November 29th

// November 29th, 2010 // No Comments » // LymeBites Blog, Lymenaide Holiday Bazaar, www.lymenaide.com

As I’ve mentioned before, our Lymenaide Holiday Bazaar is in full swing.  We’re adding more and more artists.  We also have had a generous donation in order to help artists who want to have a booth, but can’t afford to buy one, be able to get help in buying a booth.  So if you’re one of those artists, please contact us, you may be able to get help with a sponsor.

Each Monday and Thursday we have a featured artist with a giveaway.  The last giveaway was won by Chris Nimphius.  Ashley van Tol was the Featured Artist by doing a give a way, and one of her amazing creations was the lucky item Chris won.

Just to clear up a few things about each of roles.  Ashley started Lymenaide in 2009.  She is the founder of the website, as well as the Lymenaide organization.  Right now that consists of Ashley, myself, Candice and Nani.  We each have our individual roles in the team, and on our awareness projects.  Someone wondered why Ashley was a featured artist in the holiday bazaar if it’s Lymenaide, and she created Lymenaide.  The bazaar is run by all 4 of us, Ashley and Nani both are artists who have booths in the bazaar.  Just like all other artists, if they do a giveaway they can be a featured artist.  Ashley is another artist in the bazaar, that’s why she was featured artist, just as the other artists who have been and will be featured artists.

The Lymenaide website is being redeveloped right now, to be set up to work on our projects.  From things like the PSA’s, to the bazaar and our upcoming Messages of Hope.  Lymenaide will become a site about awareness, resources for awareness, and the projects the Lymenaide team is working on.  LymeBites continues to be my website, for information on Lyme, my own journey with Lyme, as well as my writing.  Ashley and Candice both have blogs on LymeBites, in addition to their own websites.  The main thing is we are a team, who are each doing their own thing, but Ashley’s vision brought us together and saw how each of our individual visions worked together into creating the Lymenaide dream team to help bring about awareness.

Got off topic there, but I know it can be confusing who is who and doing what.  So know you understand a little better that beyond the website Lymenaide, we are also an organization raising awareness.

So today is Monday, which means a Featured Artist will be posted today, along with a giveaway.  Ask your friends and family to join in the giveaway, it may be something you’d like for Christmas!  I will be keeping the bazaar info here on LymeBites also, so people know when there is giveaways, as well as who has one.

So be sure and check out the bazaar today, learn about our featured artist and the current giveaway.  Don’t forget to check out all our other talented artists, with more being added all the time.  On the days we aren’t doing the Featured Artist with a giveaway, I’ll be posting the “artist of the day”, each day picking a different artist, talking about their store and their creations.  If you follow me personally, or the LymeBites “fan page”, click here to go to the Facebook page for LymeBites, as well as on Twitter (@erut10, my personal account and @lymebites, the LymeBites account), you’ll be kept abreast of each day’s artist of the day.

We’re hearing a lot of good news from the artists as they are having sales from the bazaar, as well as hearing from many pleased customers who have received their purchases already.  Help support those with Lyme, as well as the loved ones of Lyme, many of whom rely on the sales of their stores as income, or to pay for treatment.  Tell your family and friends about it, and ask them to please help support those in the Lyme community.

One last thing, some people have questioned who earns the money for sales with the bazaar.  All proceeds of all sales go directly to the owner of the booth.  Some artists have offered to donate portions of the profits to different Lyme organizations, but unless specified all proceeds go directly to the artist.  Lymenaide makes no money off of sales between artist and buyer.  We really just want a way to be able to help support other Lymies in the community this holiday season, and we hope you’ll join us in supporting these artists.

Lymenaide Holiday Bazaar Featured Artist And Giveaway – November 18th

// November 19th, 2010 // No Comments » // LymeBites Blog, www.lymenaide.com

shaunaEach Monday and Thursday the Lymenaide Holiday Bazaar will be having a Featured Artist who is doing a giveaway.  To read about the giveaway and how you can enter to win please visit our current Featured Artist, Shauna Prudhomme – Key Element Jewelry.

Special thanks to Shauna, her amazingly inspirational creations, and her current giveaway.  Remember you can’t win the prize if you don’t enter!  So go check out Shauna’s amazing stuff now and enter to win!!