Hi Dear Friends and Family and other guests , too.
Some of you have let me know that you have tried to leave comments but were unable to - i changed the setting so this should no longer be a problem .You can post on older posts, too so please try again if you had trouble in the past !
Please feel free to leave comments , in fact i hope that you do - it lets me know someone is reading and cares ! Living with Lyme can be very lonely and isolating - people often feel awkward and don't know what to say . I don't 'need' anyone to say anything other than what is in their heart.
Please feel free to express yourself - i love the feedback .
It is good for my soul.
Sunday, April 26, 2009
Saturday, April 18, 2009
A New Day , New Visitors
I have been contemplating the poem posted previously a lot lately. It is my way of trying to come to some sort of peace with what has happened and is happening with my body since being infected with Lyme Disease. I was growing weary at being so angry all the time and railing against this disease so fiercely. I wanted it OUT . And i wanted it out NOW ! I was very close to being placed on a PICC line ( intraveneous anti-biotics for the uninitiated) and wanted to hit the Lyme HARD. As hard as needed to blast it out of my system. My PCP ( primary care physician) was at a loss as to what else to do. That is when i started in earnest for someone better versed in tick-borne infections. They are not easy to find - as politics and the powers that be have driven most LLMD's ( Lyme Literate Medical Doctors) into an off-the grid ( outside of insurance company control ) existence. They are fiercely protected by their patients - who they have so generously dedicated their time to helping with this difficult and controversial disease. They are our last hope if conventional treatment fails- which it almost always does if you are not treated within HOURS not days of an infected tick bite. It only takes several hours for the disease to disseminate through the human body - much less time than originally thought. Once disseminated , it becomes extremely difficult to eradicate completely . In fact most people well-versed in Chronic Lyme Disease believe that the most you can hope for is a remission of sorts . Not what i wanted to hear , but closer to the truth of this disease as i have now found out through exhaustive research and talking with many others who have battled this disease for months , years , and even decades. There is no easy cure .
So that is where i ended up , with this sobering reality and a different game-plan. I have a very wise and learned LLMD who has put me on a protocol that begins with re-building my immune system brick -by-brick and using low dose -pulsed anti-biotics for a longer period of time. He has convinced me that a tough course of IV drugs would take my body down with the disease and give it a leg up , rather than destroy it completely . I didn't want to take the chance . Not yet. I know my body has been ravaged this past year - these past few years with multiple surgeries and illnesses . I need time to heal. Slowly.
The New Visitors -
Recent bloodwork has revealed a few more ingredients in my already heavily spiced Tick Soup . I have Babesia Duncani, which invades red blood cells and a form of Bartonella , yet to be classified but seen crawling all over my once-healthy and now compromised red blood cells.This is not good news , to say the least but not unexpected. I have had so many symptoms , my LLMD was pretty sure i had someone else on board , too.
This , of course , makes my treament even more difficult because it is virtually impossible to get the upper hand with Borrellia if there are co-infections present. You must get those under control first and then move to more aggressive treatment against the Borrelia. Babesia is a protozoan organism that is alot like Malaria - causes some of the same symptoms but to a more or lesser degree depending on the strain. It is not easy to get rid of , either.
I am not strong enough to handle the drug Mepron which is used . I may be put on Malarone instead but not until my system can handle it. The Bartonella is even more complicated so we won't tackle that until later either.
I am in a state of having to accept these microscopic creatures as my guests , like it or not.
Rumi was one enlightened dude.
I hope i can follow in his footsteps and see the light at the end of the tunnel, too.
So that is where i ended up , with this sobering reality and a different game-plan. I have a very wise and learned LLMD who has put me on a protocol that begins with re-building my immune system brick -by-brick and using low dose -pulsed anti-biotics for a longer period of time. He has convinced me that a tough course of IV drugs would take my body down with the disease and give it a leg up , rather than destroy it completely . I didn't want to take the chance . Not yet. I know my body has been ravaged this past year - these past few years with multiple surgeries and illnesses . I need time to heal. Slowly.
The New Visitors -
Recent bloodwork has revealed a few more ingredients in my already heavily spiced Tick Soup . I have Babesia Duncani, which invades red blood cells and a form of Bartonella , yet to be classified but seen crawling all over my once-healthy and now compromised red blood cells.This is not good news , to say the least but not unexpected. I have had so many symptoms , my LLMD was pretty sure i had someone else on board , too.
This , of course , makes my treament even more difficult because it is virtually impossible to get the upper hand with Borrellia if there are co-infections present. You must get those under control first and then move to more aggressive treatment against the Borrelia. Babesia is a protozoan organism that is alot like Malaria - causes some of the same symptoms but to a more or lesser degree depending on the strain. It is not easy to get rid of , either.
I am not strong enough to handle the drug Mepron which is used . I may be put on Malarone instead but not until my system can handle it. The Bartonella is even more complicated so we won't tackle that until later either.
I am in a state of having to accept these microscopic creatures as my guests , like it or not.
Rumi was one enlightened dude.
I hope i can follow in his footsteps and see the light at the end of the tunnel, too.
Friday, April 10, 2009
Rumi- nating
art by Lisa DietrichThis being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whomever comes,
because each has been sent
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
Welcome and entertain all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
Be grateful for whomever comes,
because each has been sent
as a guide from beyond.
RUMI
Tuesday, April 7, 2009
A Letter of Protest
My husband and i both have nueroborreliosis and have been searching in vain for proper treatment for years.He has been diagnosed with Rheumatoid arthritis , Gastric reflux , depression and herniated discs. I have been diagnosed with acute sinusitis , ADHD, Interstitial Cystitis, ear , bladder and sinus infections, upper respiratory virus ,TMJ and allergies.
This is not our first exposure to Lyme Disease and its co-infections - further testing has revealed previous exposure - it was the latest 'bite' that did us in and caused full-blown Lyme Disease.
We haven't been well since.
I went to one of the top Infectious Disease specialist in the DC Area and after having been tested for every disease known to mankind from syphilis to HIV- was told " i wish i could help you but i don't think it is Lyme Disease "- even though i tested positive on the Western Blot, had been treated for it by my Primary Care Physician and had ruled out all other possible diseases. My symptoms persisted. THE SAME SYMPTOMS but now they weren't Lyme Disease ??
It wasn't until i found a doctor who believed that chronic Lyme Disease exists that we received proper care and continue to get better after years of needless suffering .Now the IDSA want to take away our last hope. Their 'guidelines' for treatment influence doctors and allow insurance companies to deny treatment. They continue to become more and more restrictive every year and make Lyme Disease out to be a trivial , easily curable disease coloring it 'black and white ' in as science points more and more to it being a decidedly 'grey' and complicated disease to diagnose and to treat. Yet people continue to stay ill , even after the supposed'cure'. They are careful to use the word 'early' in regards to treatment becuase they know that anyone coming in after a few weeks DOES NOT get cured so easily. Treatment can take years . Some live with this disease for life. When we do find a doctor who wants to treat us , their hands get tied.
Why this stranglehold on Doctors , diagnoses and treatment for a disease that gets worse WITHOUT treatment and affects many thousands of men women and children every year ? Why the needless damage to our brains and nervous systems , our joints and our hearts ? How much worse does it need to get before anyone wants to help us ?
We are tax-payers , work hard, pay for insurance and were once and still are in many cases"useful members of society", yet we can expect no help.
This is shameful and needs to stop NOW. We , as citizens will no longer stand for the ignorance and special interest profiteering of the self-proclaimed 'experts' who refuse to face the growing evidence that Lyme Disease is an Epidemic in this country. The IDSA 's theories and guidelines need to be re-tooled and re-examined to reflect the current crisis that is Lyme Disease. This disease does not go away after 30 days , as anyone who continues to be sick already knows. Lyme disease persists whether the IDSA says it does or not. We are the living proof .And we demand justice for ourselves and our children. We will be silent no longer. And our numbers are growing everyday.
Hear us roar !
This is not our first exposure to Lyme Disease and its co-infections - further testing has revealed previous exposure - it was the latest 'bite' that did us in and caused full-blown Lyme Disease.
We haven't been well since.
I went to one of the top Infectious Disease specialist in the DC Area and after having been tested for every disease known to mankind from syphilis to HIV- was told " i wish i could help you but i don't think it is Lyme Disease "- even though i tested positive on the Western Blot, had been treated for it by my Primary Care Physician and had ruled out all other possible diseases. My symptoms persisted. THE SAME SYMPTOMS but now they weren't Lyme Disease ??
It wasn't until i found a doctor who believed that chronic Lyme Disease exists that we received proper care and continue to get better after years of needless suffering .Now the IDSA want to take away our last hope. Their 'guidelines' for treatment influence doctors and allow insurance companies to deny treatment. They continue to become more and more restrictive every year and make Lyme Disease out to be a trivial , easily curable disease coloring it 'black and white ' in as science points more and more to it being a decidedly 'grey' and complicated disease to diagnose and to treat. Yet people continue to stay ill , even after the supposed'cure'. They are careful to use the word 'early' in regards to treatment becuase they know that anyone coming in after a few weeks DOES NOT get cured so easily. Treatment can take years . Some live with this disease for life. When we do find a doctor who wants to treat us , their hands get tied.
Why this stranglehold on Doctors , diagnoses and treatment for a disease that gets worse WITHOUT treatment and affects many thousands of men women and children every year ? Why the needless damage to our brains and nervous systems , our joints and our hearts ? How much worse does it need to get before anyone wants to help us ?
We are tax-payers , work hard, pay for insurance and were once and still are in many cases"useful members of society", yet we can expect no help.
This is shameful and needs to stop NOW. We , as citizens will no longer stand for the ignorance and special interest profiteering of the self-proclaimed 'experts' who refuse to face the growing evidence that Lyme Disease is an Epidemic in this country. The IDSA 's theories and guidelines need to be re-tooled and re-examined to reflect the current crisis that is Lyme Disease. This disease does not go away after 30 days , as anyone who continues to be sick already knows. Lyme disease persists whether the IDSA says it does or not. We are the living proof .And we demand justice for ourselves and our children. We will be silent no longer. And our numbers are growing everyday.
Hear us roar !
Thursday, April 2, 2009
From Atop the Dizzying Heights
It is hard to tell where one is at with Lyme Disease and all its mercurial traits.
There are different ailments for different days and even those ailments move around your body like an apparition . Pain looms large one minute, in- say your left knee- then disappears a few hours later to take up residence in the back of your head, not unlike getting suddenly walloped by a softball to the skull.
Having Lyme Disease makes you in a constant state of flux - any kind of stasis or stability only a wistful remembrance of things past.
It is enough to drive one mad - if you let it.
I am still in the mode of wrapping my mind around the whole complexity of this disease. I have been on this new protocol with a Lyme Literate MD now for two weeks and i am , in fact, much better.
I can at least get out of bed .
I have some good days where i only have five or six major issues going on - e.g. my feet are cold and numb, my left shoulder is sore , it hurts when i pee, my eye is twitching uncontrollably for hours and i am feeling joint pain in my wrists and hands. That's a good day.
Don't get me wrong - i have hours here and there where i notice none of these and i almost feel normal again. Then one by one , the symptoms start to creep back in and i am reminded that i have a disease that isn't easily cured by anti-biotics as the current propaganda leads everyone ( who doesn't have Lyme ) to believe. There is a very good chance i will always have this pathogen in my body and i will have to , like countless others , learn to live with and learn to cope with the ugly reality of Lyme Disease for life.
Of course , my hopeful side wants to believe that as LD gets more and more prevalent and the media picks up on it that MAYBE just maybe there will be more funded research , more co-operation between contentious scientists, doctors and institutions and they will begin the process towards finding a REAL cure for this devastating illness.
I am one of the 'lucky' ones (so far) - i can still function , live my life with adjustments ( albeit in pain , and at half-mast ) but i can still walk and talk. There are many who cannot do these things due to permanent nerve and tissue damage from being left untreated or treated too late .
Yes, i am very lucky in that respect.
I am glad i started researching Lyme as soon as i was diagnosed and side stepped the mainstream BS and found a doctor who would help me.
The hardest thing though is to realize that had i had this information years ago i may have recognized the signs earlier or avoided it altogether by taking the proper precautions an/or early treatment.
I cannot seem to wrap my mind around the injustice of having a disease no one properly warned the public about . That is enough to drive one mad , in itself.
There are different ailments for different days and even those ailments move around your body like an apparition . Pain looms large one minute, in- say your left knee- then disappears a few hours later to take up residence in the back of your head, not unlike getting suddenly walloped by a softball to the skull.
Having Lyme Disease makes you in a constant state of flux - any kind of stasis or stability only a wistful remembrance of things past.
It is enough to drive one mad - if you let it.
I am still in the mode of wrapping my mind around the whole complexity of this disease. I have been on this new protocol with a Lyme Literate MD now for two weeks and i am , in fact, much better.
I can at least get out of bed .
I have some good days where i only have five or six major issues going on - e.g. my feet are cold and numb, my left shoulder is sore , it hurts when i pee, my eye is twitching uncontrollably for hours and i am feeling joint pain in my wrists and hands. That's a good day.
Don't get me wrong - i have hours here and there where i notice none of these and i almost feel normal again. Then one by one , the symptoms start to creep back in and i am reminded that i have a disease that isn't easily cured by anti-biotics as the current propaganda leads everyone ( who doesn't have Lyme ) to believe. There is a very good chance i will always have this pathogen in my body and i will have to , like countless others , learn to live with and learn to cope with the ugly reality of Lyme Disease for life.
Of course , my hopeful side wants to believe that as LD gets more and more prevalent and the media picks up on it that MAYBE just maybe there will be more funded research , more co-operation between contentious scientists, doctors and institutions and they will begin the process towards finding a REAL cure for this devastating illness.
I am one of the 'lucky' ones (so far) - i can still function , live my life with adjustments ( albeit in pain , and at half-mast ) but i can still walk and talk. There are many who cannot do these things due to permanent nerve and tissue damage from being left untreated or treated too late .
Yes, i am very lucky in that respect.
I am glad i started researching Lyme as soon as i was diagnosed and side stepped the mainstream BS and found a doctor who would help me.
The hardest thing though is to realize that had i had this information years ago i may have recognized the signs earlier or avoided it altogether by taking the proper precautions an/or early treatment.
I cannot seem to wrap my mind around the injustice of having a disease no one properly warned the public about . That is enough to drive one mad , in itself.
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