Posts Tagged ‘Bartonella’

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

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.

What A Doctor Should Be – ©Karen Angotti

// June 10th, 2010 // 1 Comment » // Family of Lyme, Guest Authors, LymeBites Blog, Lymenaide Awareness Campaign

(The following article is copyrighted and being used in it’s entirety with permission from the author). 

Helen Raser’s friend, Karen Angotti, is the mother of a beautiful young woman, Lisa Marie, who has been sick with lyme and co’s for about 20 years. Here is one of Karen’s many beautifully poignant pieces based on her long and difficult journey in the world of Lyme Disease. You may repost this article in its entirety only, please do not excerpt it, per Karen’s request.

WHAT A DOCTOR SHOULD BE
©Karen Angotti

A doctor should be a hero, a knight in shining armor, the sheriff in the white hat. A brave, courageous defender against wanton diseases and virulent pestilences that kill, maim, and destroy. He should be someone who doggedly pursues the enemy without a thought of retreat. Relentless and determined, he fights until the last breath is gasped and the last, faint heart beat is pumped through the struggling body of someone he may not even know. For this is his mission, to fight death and pain, to endeavor to soothe, heal, and relieve. It is a thankless task for death and suffering are as much a certainty as anything in this world. For as soon as one hideous disease demon is squashed with his seemingly pitiful weaponry, another more dreadful and fierce replaces it; and the battle begins anew.

A doctor should be someone who cares more for people than for money or prestige. A doctor who does not care is like an airborne blind pilot who cannot see the runway or read his instruments. All the knowledge in the world will not land that plane without the eyes to see. And likewise all the knowledge in the world will not cure a patient that a doctor blinded by indifference and apathy cannot see is truly ill. For a real doctor will listen to his patients with a heart of concern. He will listen to all his patients not just those who are comely of form, polished, refined, and educated. And adding that working knowledge of the patient to his book knowledge and experience, he will attempt to piece together a treatment that will work. No computer can compete with this ability. For though computers can spit out a diagnosis based on symptoms and then prescribe a standard treatment, no computer has a heart that can see and hear the patient with his own peculiarities and idiosyncracies like a real doctor can. Compassion is at the heart of that indefinable “art of medicine.” Without it, a doctor might as well be replaced by a timesaving, efficient state-of-the-art computer whose memory has less capacity for error than a frail, fallible human mind.

A doctor should be humble realizing that his craft is far from perfected. Medicine is a science that is constantly changing and growing; and the modern “discoveries” of today may soon become the obsolete “discarded failures” of tomorrow. Only a doctor who is humble enough to recognize the gaps in knowledge that exist can begin to have the kind of open mind that considers intriguing, new ideas and possibilities which may become the discoveries of tomorrow. For if one thinks he knows all there is to know, he no longer looks for answers and the three little words, “I don’t know” cannot pass through the sweilling lump of pride in his throat. Pride can construct an impassable roadblock on the path to the future.

A doctor should be someone who enters not a profession but a ministry–someone who is there to serve not to be served. People (even doctors) are not at their best when they are sick and scared. Who would not be irritated by listening to endless complaints all day long year after year? Only someone who realizes that the reason for choosing this calling was to alleviate as many of those complaints as possible. And given the impossibility of curing all of these ailments, the reward must not come totally from the lessening of complaints or the adulation of patients but from the knowledge of a service well rendered. The greatest satisfaction must come from knowing that you have done your best sometimes against seemingly impossible odds. Unraveling an intricate, diagnostic puzzle, using an innovative technique, or maybe simply holding someone’s hand and saying, “I am sorry.” These are the things that make being a doctor worthwhile. These are the intangible things that make the endless complaints, petty annoyances, and invasions of time bearable.

A doctor should be someone who is honest and trustworthy. Qualities that we often ascribe as more necessary for bankers and accountants. But which has more intrinsic value–mere money or an irreplaceable life? Trust is necessary between doctor and patient or a crucial element that may mean the difference between life and death is missing. If a doctor is saying one thing to a patient and writing another in the chart or gossiping about him with other doctors and nurses, then a sacred, unspoken trust has been broken; and the breach may impinge the entire relationship.

A doctor should be someone who is courageous and undaunted by the challenges which he most surely will face. There will always be some in every profession who are dishonest and even evil, those who will use their power for gain no matter how many or who it harms. “All it takes for evil to prevail is for good men to do nothing.” In medicine, perhaps more than any other field, it is imperative that the good men restrain the unsavory. For if they do not, who else will have the necessary knowledge or expertise to do so?

A doctor should be someone who is kind and discreet for ill-spoken words can scar
and maim as surely as a knife. And because these hidden scars are indetectable by any test or examination, they almost always cause a pemanent affliction–most notably a communication rift between doctor and patient that cannot be bridged.

A doctor should be someone who loves what he is doing so much that he would do it even if he were not paid or otherwise compensated. For in this ongoing battle between life and death, God’s most precious creation, Man, must inevitably confront his soul.

To my doctor, Edwin J. Masters, M.D., who showed me that a doctor could be what he should be.
Karen Angotti

Invisible Illness Week Questionaire (Re-Post)

// June 6th, 2010 // 3 Comments » // LymeBites Blog, Re-Posts

June 6th is Invisible Illness Awareness Day.  I am re-posting something I had written last September in response to living with an invisible illness.  I thought today a good day to share it.  Please take the time today to consider someone with an invisible illness, and please don’t tell us we don’t look sick.  There, now you’ve learned something and can veg out for the rest of the day (after you finish reading the post of course).

This is a re-post from my personal blog written September 20, 2009.  A friend of mine (also a sufferer of an “Invisible Illness”) and I both answered this questionaire about having invisible illnesses.  It’s been a while since I’ve read it, and I’ve recently told a few people about answering these questions at that time (I’m going to answer the questions again now, 6 months later and see what has changed after 6 more months of being sick.  I will post that when I do.)  So I decided to repost it for others to share what it can be like, as well as to see where I was 6 months ago and where I am today.  There are a lot of spelling or grammar errors…instead of fixing them, I’m leavint them so you can see how difficult it was for me at times to even form a complete sentence that would make sense.  The brain fog and cognitive dysfunction associated with Lyme disease and it’s co-infections can be absolutely astounding.  This is something I worked on and edited and corrected before I posted it, it took a while and still ended up with a lot of errors.  But it’s all part of what was going on at that point in my illness.  Also please note this was 5 weeks before I saw an Lyme literate physician.  At this point in time (5 months into my illness) I was being treated by a rheumatologist as best she could until I could get into see a Lyme specialist. 

Hello all. National Invisible Chronic Illness Awareness Week is September 14-20th, ending today. I’ve been asked to join the thousands of others to write something about being a sufferer of an “invisible illness”. It took a few days to be able to do it, but I’m glad I can do add to the many other stories as this week of awareness comes to an end.

1. The illness I live with is: Chronic/Late Stage/Disseminated Lyme Disease, also called neuroborreliosis, which is caused by a bacteria called Borrelia burgdorferi or Bb. The bacteria is a Gram negative spirochetal bacteria, this structure allows the spirochete to move efficiently in corkscrew fashion through viscous media, such as connective tissue. It has a similar genetic makeup to T. pallidum, the agent in found in syphilis. Bb are microaerophillic and slow-growing—the primary reason for the long delays when diagnosing Lyme disease. This bacteriological infection comes primarily as a result of a tick bite but Lyme spirochetes have also been found in semen and breast milk, however transmission of the spirochete by these routes is not known to occur. Congenital transmission of Lyme disease can occur from an infected mother to fetus through the placenta during pregnancy.
Early symptoms may include fever, headache, fatigue, depression, and a characteristic circular skin rash called erythema migrans. Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early. Late, delayed, or inadequate treatment can lead to the more serious symptoms, which can be disabling and difficult to treat. Occasionally, symptoms such as arthritis persist after the infection has been eliminated by antibiotics, prompting suggestions that Borrelia causes autoimmunity.
Ticks that transmit B. burgdorferi to humans can also carry and transmit several other parasites such as bartonella, babesia, ehrilicha, and other co-infections. I believe I am also co-infected with bartonella, a version of cat scratch fever. Lyme Disease is an invisible illness, you can’t always outwardly see the symptoms.

(http://en.wikipedia.org/wiki/Lyme_disease)

2. I was diagnosed with it in the year: 2009. We know I have had it since 2003, every medical problem I’ve had in that time is a direct result of Lyme disease. There is a possibility I’ve had it since I was a child (including a hospitalization for a strange arthritic virus in 1977). There are other time markers that could show when I was infected, including thyroid disease in 1987 and shingles in 1998. What we do know is it’s been ravishing my body for anywhere from 6-32 years until diagnosis with a CDC positive Lyme blot in June 2009.

3. But I had symptoms since: 2003, possibly longer. Since 2003 I have suffered and been treated for the following:

Irritable bladder system (was told nothing was wrong with the plumbing, I just had a weak bladder and would have to live with it)

Kidney/Gall stones, in and out of ER’s and Dr’s for what they believed to be passing stones, only no stones were ever found. Final decision was “maybe you already passed it and there is no sign of it having been there”. The pain neve went away, but no Dr could ever find out what caused the pain.

Depression/Anxiety: I’ve been treated on and off for years for both, usually without being able to find any reason for the triggering of these symptons.

Allergies/Sinuses: About 10 years ago my allergies took a life of their own. Each year progressing, until 2 years ago I began with constant sinus/ear infections with brutal allergies. I was told there ws nothing that could really be done, it was just allergies. I went from taking 5-7 medicines a day for allergy symptons to none since being treated for Lyme disease and seeing a Nutritionist for nutrition response therapy.

Fibromyalgia: Over the past 10 years or so I’ve developed Fibromyalgia symptons. At first I was told by 2 Dr’s that was not a real condition, and that men did not get it. AFter diagnosis I found a Dr who tested me for it and it was positive. Fibromyalgia is one of many diseases caused by Lyme disease.

In 2003 I went to a cardioloist for heart problems. My heart raced, I had chest pains, and could feel it skipping beats. After wearing a monitor for a while they said my heart was exceptionally healthy, just threw in extra beats. After being diagnosed I have been in the ER with heart attack symptons, where I was told Lyme meningitis had settled in my chest, my heart was very healthy but the Lyme is making it beat weird and causing palpitations.

I injured my back in an accident in 1997. Since then I have had symptoms on and off until a year ago the pain got unbearable. I began a series of specialists who called my case an “onion”, peeling layer after layer until they found what was wrong. After 5 steroid injections in my back (the last in April of 2009) the Lyme disease is believed to have actually activated, due to the steroids in my spinal fluid. 2 weeks after my last injection I lost vision in one eye, and that began the journey of being diagnosed with Lyme. (Please note, since being on Lyme treatment my back pain has almost diminished.)

I have strange rashes on my upper body that have been there for 6 years.

4. The biggest adjustment I’ve had to make is: knowing my life will never be the same. I will get better, I will fight this until I have no fight left to give, but I know I will never fully recover. I know this will affect the rest of my life after recovery. I know my immune system is greatly compromised. A common cold will knock me on my ass for a lot longer than the average person. I know I needm ore sleep than the average person. I know that I can’t handle the stress I used to thrive on. Now it becomes overwhelming and I have to simplify things. The hardest thing for me to accept is having to simplify a life that I loved, full of complications and complex relationships and happenings. I have to mourn that life, and learn to adjust to the life that is ahead of me. It doesn’t have to be a bad thing, it just has to be different.

5. Many people assume: That having Lyme disease is like a flu. Each day means you are better. Lyme does not work like that. The pain in my chest may be gone today, but I may not be able to walk today, or I may not be able to remember how to drive to a friend’s house. The disease changes every day, and effects every part of the body. It takes time, but I don’t think friends and family understand that…they assume having a good day is a sign of healing. It will be months before i begin to get any of my energy back, before I can begin to get better. It’s hard for people who are close to me to understand that. I think they feel in order for them to have hope they need to see quantitative changes in my recovery. Lyme does not work like that. Also, people assume I am not sick if I look like myself. It gives people a false sense of hope. Know that on a good day, or when my body is not twitching, that my body is still racked with pains and sensations I cannot describe. It’s not what you see with Lyme disease that is horrible, it’s what you don’t see. Please understand I may look healthy on occasion, but it doesn’t change what’s going on in my body.

6.The hardest part about mornings are: Normally upon waking there is a 3-5 minute period after awaking where you can’t feel any pain. At first I would think I had died during the night. Now I feel those moments when I wake up, and hold on to them as a reminder that some day I will no longer have constant pain. The first hour after waking up is the hardest. I wake up with panic attacks on a daily basis. I spend the first hour fighting the feeling of panic. With time I can focus in on the reality, and feel better. It is uncontrollable and irrational. I may spend 20 mins worrying about a phone call for no reason, or wake up thinking I’m late for work and need to call in. It takes that full hour to get a hold of my self, to calm myself and remind myself what is going on. The other feeling is pure exhaustion. Often from insominia. The frustration of waking after 10 hours of sleep and feeling exhausted is overwhelming. Today I thought I would have to sleep all day and turn my phone off, because of how exhausted I was when I woke up. But with time, you begin to start moving as best you can fo the day. The other feeling upon waking is doing a full body scan. Does somethiing new hurt? Did anything change during the night?

7. My favorite medical TV show is: Scrubs. Laughter truly is the best medicine.

Two important things: My iPhone. When I wake up it’s filled with msgs from my loved ones checking on me as a new day begins. I’d be lost without it. My medicine caddy is the other important item. From antibiotics to pain killers to Benadryl, I live out of that little caddy to get me through each day.

8. A gadget I couldn’t live without is: Remote. Many days while the world goes on without me, I rely on my TV and DVD player to keep me entertained and keep my mind off of what I’m missing.

9. The hardest part about nights are: Insomnia, feeling alone in the middle of the night when you are so tired you can’t keep your eyes open, but the pain and sensations going through your body cause you to jerk uncontrollabley to the point you end up rolling aound on the floor moaning in pain. Many mornings I’ve woken up on the floor of another room, having finally fallen asleep there.

Pills.

10. Each day I take: 46 pills, and 5 liquid supplements. This does not include pain relievers, pain killers, sedatives, anything “as needed”.

11. Regarding alternative treatments: I believe in them whole heartedly. But as a compliment to traditional medicine. We need them both. Any person who has told me to rely just on alternative medicines, I’ve walked away from. I need science just as much as anything else now. I’m lucky to have an specialist who is open to those treatments and works in conjuction with my alternative treatments.

12. If I had to choose between an invisible illness or visible I would choose: I’d never choose either. I’m blessed with amazing friends and family, I don’t have to convince them I’m sick with my “invisible illness”. Chronic pain is chronic pain, I would not choose it either way.

13. Regarding working and career: on hold. In 4 months I’ve missed over 500 hours of work. I’m lucky I work for the gov’t, where I have benefits and programs to help me, otherwise I would have been homeless months ago. I think what I’ve accomplished in my 11 year career with the state, all the while having Lyme disease. Some times I get sad wondering what I might have accomplished with life had I not been sick, but I can’t dwell on the past, I need to concentrate on the future. I have every intention of returning to work and my career.

14. People would be surprised to know: Many Lyme patients take their own life before ever getting better. I feel for those who suffered so much they felt they had no other choice. I could understand feeling that way if I did not have my amazing friends and family here supporting me. I want to fight for those who are too sick to fight for themselves. I am going to get better, and make sure that no Lyme patient ever feels they have no other option other than taking their own lives. I will devote my life to fixing this. No body should have to suffer in such silence. The other thing is people saying “you’re amazing” for doing this. Doing what? Fighting for my life? I do not feel special because of this fight, I do not feel strong or empowered. Some days I struggle to wipe my own ass in the bathroom. That is not a feeling of empowerment. People say how amazing Lyme patients are for fighting, but they are wrong. It’s not a fight we chose to fight. We are all in reactive mode. I’m fighting for my life. To stay alive, to get my life back, to help others. I don’t feel special because of that, I feel human…I’m doing what I need to do to survive, that’s all.

15. The hardest thing to accept about my new reality has been: the Losses. Friends (it seems hard to believe, but you lose friends…not because they’re evil or mean, but some can’t deal with it. For some their life goes on without you. It’s so hard to see your life go on without you in it. Also I miss work…I miss the satisfaction of doing a good job. I miss the chaos of working in a budget office. I miss the socialization, I really love my coworkrs, they are more than friends to me. I miss all of that.

16. Something I never thought I could do with my illness that I did was: Tell people what they really mean to me. This disease has brought me so much closer to my family, my friends, my circle of life. I’ve learned to really appreicate the little things having people in my life means. Maybe without being sick I’d always take that stuff for granted.

17. The commercials about my illness: There are none. Thankful for Under Our Skin and the awareness that this documentary is bringing worldwide to Lyme disease and the politics behind it. (http://www.underourskin.com)

18. Something I really miss doing since I was diagnosed is: write. The brain fog makes it so hard to get anything down on paper. I also miss driving without anxiety.

19. It was really hard to have to give up: Everything. Lyme has taken everything from me in the past few months. I fight daily to get it back. There’s nothing harder than giving up your life.

20. A new hobby I have taken up since my diagnosis is: Education. There’s got to be a way for me to keep someone else from going through this hell.

21. If I could have one day of feeling normal again I would: Go clubbing with friends. I’d dance. I’d lay in the sun with my friends and laugh at inappropriate jokes. I’d go for a walk without having my leg give out on me. I’d make up for all the times I’ve had to cancel or miss out on time with loved ones.

Outside the Doctor’s Office

22. My illness has taught me: Dr’s cannot be trusted with your life, you need to take some responsibiliy yourself. If I let the Dr’s be in charge I’d be in a wheelchair now wondering what was wrong with me, being told I was “cured” by gov’t guidelines. It has also taught me love is not pretty. It’s not well dressed, well groomed, and it doesn’t always smell good. Love can be ugly, but it’s the most wonderful thing any of us can ever feel.

23. Want to know a secret? I’m scared to death. Every day I wonder how much longer I have. It makes me fight so much harder. At the age of 36 I should not be so concerned with my affairs being in order, because I know my heart could stop from Lyme disease at any time. It’s not likely, but it’s scary to have that realization out there. My motivation for fighting is in part fueld by fear. I’ve learned to play “in character” when I’m with friends, the role of who I was. But in the back of my head I’m always scared of what this disease may do next.

24. But I love it when people: laugh with me. It’s funny when I put the dishwasher detergent in the freezer and the ice cube tray in the cabinet. If I didn’t laugh, I’d cry…I’m lucky to have friends to laugh with me when I can’t think of the right words or forget their names.

25. My favourite motto, scripture, quote that gets me through tough times is: (I’m stealing this from another Lymie…it really sums it up)

Sometimes you wake up. Sometimes the fall kills you. And sometimes, when you fall, you fly.
-Neil Gaiman

Currently listening to: DMB Groogrux King, and Eminem Relapse. Also Coldplay seems to have a calming effect on bad days.

26. When someone is diagnosed I’d like to tell them: This is where you have to take your health in your own hands. If you have a Dr who tells you anyhing you don’t agree with, you can find help elsewhere. Do not take what your Dr says as truth…you need to be actively involved in your own health and recovery. I’d also tell them they have a friend in me, and all the info and resources I’ve spent 4 months getting together, let me help you if you don’t know how to help yourself.

27. Something that has surprised me about living with an illness is: How hard it is for people to accept you are sick. That health insurance, thta which is supposed to help us, is usually against us. That Dr’s do not know everything. And that friends and family will always be the best medicine.

28. The nicest thing someone did for me when I wasn’t feeling well was: I couldn’t list one single thing. From my friends doing a benefit to help me pay for my treatment, to a random phone call or email sending me healing wishes and letting me know I’m loved. The list is unending of what they have done for me while sick.

29. I’m involved with Invisible Illness Week because: Because so many of my friends suffer in silence with their own invisible illness. MS, Fibromyalgia, Chiari…this isn’t just about me, or Lyme disease. This is for everyone who has one of these illnesses that destroys you from the inside out. I need people to understand how sick I am. I need people to get involved. I need people to protect themselves and their children from suffering like this. The more people know what’s going on inside my body, the more likely they will be to take action for themselves in the future.

30. The fact that you read this list makes me feel: like there is hope…we can spread hope quicker than a bad case of Herpes on Prom night. Let’s let hope and knowlege spread quicker than the disease, together there is something we can do. Let’s do it!!!

Bartonella – Friend or Foe?

// May 24th, 2010 // No Comments » // LymeBites Blog

I know, silly question…of course it’s foe, but it was a catchy title and I’m not sure I have the energy to come up with two catchy titles in one day. 

For months after diagnosis I fought the Lyme disease with antibiotics.  While I didn’t really see much improvement, my Lyme doctor felt it at least kept the Lyme at bay.  I was fortunate to have a great doctor who was doing her best to treat me until I could be seen by a Lyme specialist.

When I did finally see the specialist, he diganosed me with two co-infections that are also passed through the bite of an infected tick.  Babesia, which is a malaria like disease, and Bartonella, also known as Cat Scratch Fever.  Once these co-infections were addressed and treated, I could begin my journey of healing from Lyme.  One small catch, these co-infections can be pesky little buggers that are just as hard to get rid of as the Lyme disease itself. 

While I feel my Lyme treatment has kept me on a steady track of improvement, the co-infections have flared up and caused problems here and there throughout the treatment.  Right now I am being treated for another flare-up of the Bartonella.  The problem with these co-infections is the symptoms can overlap with one another, making it hard to know which infection is causing what problems.  That’s why a Lyme Literate Medical Doctor (LLMD) is so important, because they have the experience and knowledge to assess and diagnose you based on your symptoms.  So let’s look and see what the official definition of Bartonellosis (the official term of the disease). 

From Wikipedia: Bartonellosis is an infectious disease produced by bacteria of the genus Bartonella.[1] Bartonella species cause diseases such as Carrion´s disease, trench fever, and cat scratch disease, and other recognized diseases, such as bacillary angiomatosis, peliosis hepatis, chronic bacteremia, endocarditis, chronic lymphadenopathy, and neurological disorders.

Exactly, what the heck does that even mean? 

Well from LymeInfo.net the following information is listed as symptoms of a Bartonella infection (taken from http://www.lymeinfo.net/bartonella.html)

There are a variety of symptoms associated with Bartonella, including, but not limited to, the following:

GENERAL: Fatigue, Restlessness, Combative behavior, Myalgias, Malaise, Liver and/or Spleen involvement, Abdominal pain, Infectious Mononucleosis-like Syndrome, Granulomatous Hepatitis

BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.

RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.

EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud.s Oculoglandular Syndrome, and Papilledema.

BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.

HEART: Endocarditis, Cardiomegaly.

You’ll notice how closely related to Lyme disease many of these symptoms are.  I point this out for those who know they have Lyme disease, but are not being treated by a fully Lyme Literate treating physician, that you need to take into consideration the possibility you have more than just a Lyme bacteria infection, but a host of other disease such as Babesia, Ehrlichia and Bartonella just to name a few.  It is believed that ticks are loaded with much more bacteria now than they previously had, so they are no longer just giving us Lyme disease, but a long list of other bacterial infections. 

The more knowledge you have as a patient, the more help you can be to your medical professional, so please take the time to learn about the co-infections if you have Lyme disease, you may very well need additional treatment because you have to beat more than just the Lyme bacteria. 

Fore more information on co-infections contact ILADS (International Lyme and Associated Diseases Society) www.ilads.org or Dr. Burrascano’s Advanced Topics In Lyme Disease http://researchednutritionals.com/FactSheets/Burrascano’s%20Advanced%20Topics%20in%20Lyme%20Disease%20_12_17_08.pdf or google Lyme co-infections.