I guess all along ( since my diagnosis in March 2009) i have had some inkling or understanding that i may have had this disease ( Lyme Disease and / or co-infections ) for a very long time - much longer than my recent tick experience would suggest. I had even discussed this with my LLMD in my first visit . We discussed it again recently.
We were going over some of my current issues and went back over my early health history .
I had one of those blazing 'lightbulb' moments of " HOLY CRAP ! " i have HAD this for more than 30 !!!! years . Yes , i was re-infected recently - that i know for certain but some , if not all of this was on board for a very long time. ( i think the Babesia is the only real 'new' one. )
In my recent LLMD appointment we went over my Bartonella flare since this seems to be the main culprit right now and i realized ( as i was adding up my current symptoms ) that many of the SAME symptoms have appeared and re-appeared over the years since i was 13 years old . I had a stray kitty that we had adopted and she was vicious in the beginning , scratching me repeatedly etc . until i tamed her and she became my best friend. It is very likely she infected me first.
I had strange rashes.
I developed strange , red, angry " stretchmarks" on my hips and upper thighs. (I was 95 lbs at the time.)
I had terrible migraines ( my grandfather passed away so maybe it was stress )
They were bad enough for my doctor to suspect a brain tumor, though.
I had several Cat-scans, MRI , etc . Nothing.
Stress.
They went away only to come back , intermittently over the years.
I got conjunctivitis alot , recurrent bladder infections , strange rashes, emotional outbursts . I was a teenager . Normal , right ?
All the doctors made me think so .
I had Mono ( Epstein -Barr virus ) so bad i was hospitalized overnight.
I always got tired easily after that. They administered steroids.
I would get "sun poisoning" on my chest when i went out in the sun .
I cried alot , threw 'fits' . Had strange nightmares. Migraines and neck pain persisted.
My periods were so heavy i had to stay home from school.
I never felt 'normal'.
I am SO ANGRY. No one ever thought to test me for Lyme disease , i was outdoors all of the time , hiking , camping , playing forts in the woods growing up , frolicking through fields and beach grass without a care in the world.. I was bit by spiders, ticks, mosquitos , fleas - you name it . Constantly . I was sick a lot.
Then I got cervical cancer in my early twenties, - had a good patch for about five years when i got ' health concious ' and became a vegetarian and organic only consumer. I took probiotics , practiced yoga , took vitamin c . I built a stronger immune system.
Then i went through a very stressful period with work and love and i started getting sick again.
I had fibrocystic breast tumors , ovarian cysts, uterine fibroids. Depression , ADHD, exhaustion. Neck issues and migraines continued.
Years passed- i guess i am aging early...
A pregnancy plagued by pain and illness. My son almost died . I almost died . A year later - hysterectomy.
Now i worry about his health - which is like a ticking time-bomb waiting to explode. He is healthy now but what if ? This thought haunts me. I don't want to miss anything, like i was missed. I also don't want to be one of those scary , over -protective germ-phobic mothers , either . So i wait and i watch , like a CIA operative.
No one EVER questioned ANY of my health issues .
I suffered off and on for years with no explanation.
Just tests picked out of a hat , pills and being brushed off when i couldn't be helped or 'solved'.
WHY didn't anyone know or suspect ???
BECAUSE NO ONE KNOWS .
I am making it my mission to help educate people on the truth behind the 'spin'.
I will no longer stand silent and help perpetuate a lie.
The fact that i have possibly been suffering in silence for YEARS is even worse .
I am just so angry , and i am trying to come to grips with this idea.
i know many , too many of you can relate.
I am not 'special' , i am one of thousands who are only now ( if they are lucky (unlucky ? ) finding out why their life has been filled with unexplained health problems.
Multiple exposures are not only possible but highly likely . A strong person's immune system can fight back a lot of infection . Many of us ( most of us actually ) have viruses and bacteria that we live with and never cause us much of a problem. Until your immune system is compromised by stress, poor health , surgery or another illness - you may never even know it. We are only tested and treated when something goes wrong . This , in my opinion is definitely part of the problem with medicine in the US - we do very little in terms of preventative care which would make everyone a lot healthier and happier . Except Pharmaceutical companies , of course .
And they have their hands in everyone's pie. but THAT is another discussion , altogether. ; )
So , i got a tiny little tick bite last summer ...
And that may have just been THE STRAW THAT BROKE THE CAMEL"S BACK .
My world has changed forever.
It is that realization that has me floored, still.
I just cannot get over it.
It is a lot to process when one is already ill .
I do not want my child or anyone else to go through what we are going through .
It is just too much to ask .
I am still in shock that i didn't know ANY of this just a few short months ago .
Hard to believe .
And i like to think of myself as an informed human being .
I was lied to . We all were .
In the 'information ' age , to boot.
Thank you for hearing me . I just needed to tell someone - everyone - how i am feeling . I am strong - i am a survivor . But i still hurt .
And tonight , i am really hurting as i mourn the loss of that thirteen year old girl who loved nature and animals and the world and it didn't love her back the way she thought it would.
Friday, August 14, 2009
Monday, August 10, 2009
A Patent Lie - The IDSA Hearings and the truth
The IDSA hearings in Washington DC
(forced by the anti-trust lawsuit brought on by the courageous Attorney General Blumenthal of Connecticut )have come and gone recently.
Most people didn't even hear about it.
I lamely posted it on Facebook and Twitter hoping to spread the word.
It would have been nice to see it on the evening news .
These hearings were an important first step in recognizing the threat this seemingly
innocuous disease actually has become. It is a complicated and evolving form of bacteria that is easily transmitted and not easy to eradicate once it finds a home inside a human host.
The percentage of people who catch it early enough to have effective treatment is dwindling.
There are many new strains and they are constantly evolving and adapting . new co-infections have been discovered - viruses , bacterium and parasites that complicate treatment and complete recovery. This is NOT the simple disease the IDSA wants you to believe it is.
Many , such as myself and my husband are left with lingering and myriad health problems.
Some of which can prove fatal. People have died from Lyme Disease - it usually is listed as
Heart failure , stroke or other maladies but many are the result of long-term undiagnosed or under-treated Lyme Disease and co-infections. A recent Yale study revealed that 90% of a sampling of brain tissue from Alzheimer victims contained Borrelia Burgdorferi , the bacteria that causes Lyme Disease. This has been seen in those diagnosed with ALS, MS , Bi-Polar Disorder , Lupus , Chronic Fatigue Syndrome and Fibromyalgia as well as many other ' unexplained' illnesses. The evidence is mounting and so are the statistics.
When there are too many of us , change will come.
But what do we do in the meantime when a handful of powerful organizations have hog-tied honest researchers , scientists , doctors and patients who have little to gain from their greed and underhanded censorship ?
What do the sick do until then when the easy cure '30 days of doxycycline' fails us ?
The Hearings were important but nothing has really changed. Yet.
Lyme Disease is epidemic in the continental US the health of thousands are at stake and it seems no one cares . Will anything even come of it ?
The IDSA heard much testimony , including scientific research it had previously refused or banned . Many dissenting viewpoints were heard ( finally ) but this was not a public forum - the IDSA closed it to the public and media . What does this tell you ?
I do not have much hope when the greater public at large is purposely kept in the dark.
This includes well intentioned physicians and health care policy makers.
If the word does not come on down from on high - we will continue to be mis-diagnosed , mis-treated and ignored.
The public is purposely kept in the dark about many illnesses that have patents on them ! This seems ludicrous but i assure you it is true. What's the saying ? " Follow the money "...
No one knows because important information and scientific study is being suppressed by those who have a financial interest ( and hold patents on disease) for a vaccine. If more than one strain exists , if it can hide in the tissues , change form , exist with co-infections than a LYME DISEASE VACCINE WILL NOT WORK ! The public would reject it and all that money and research slotted for it would be lost profit . The first vaccine in the eighties- Lyme Rix was a bomb - it actually caused Lyme Disease in some of the public and was quickly pulled off the market under the PR spin of
" poor sales" . A form of it is still being used on Dogs. A 'salvage'operation?
Flu vaccines run some of the same risks - most people get them without question- whether they are risky or actually effective doesn't seem to matter .
We SHOULD question why .
The government and its institutions like the NIH do not have our best interests at heart even though they were set up supposedly for that very reason . Big business has gotten a hold on every corner of the research dollar . Big Pharma IS Big Brother .
Then there's chronic illness and the healthcare system . Don't even get me started ...
NO ONE wants to pay for it. Long-term treatment for anything is greatly frowned upon.
Private insurance rejects you , HMO's deny claims and paying out of pocket is all that is left.
IF you can find a good doctor who is knowledgeable about tick-borne infections to treat you !
Even then it is precious little. Proper and effective treatment is in its infancy even though these
micro-organisms have been around for quite some time. We are all still just guinea pigs , even when good hearted doctors are trying to heal us and reduce our suffering - they are only guessing without the help of more research and the organizations that SAY they are protecting us.
The new Healthcare Reform , sadly, will do little to change this.
It is a start and reform is needed but a long way from securing health for the public.
Until you take the profit out of health care things will continue as usual , regardless how many more people are 'covered'. This is a truth many are not willing to hear.
Especially , the chronically ill .
We will be left out to go away and quietly suffer - again.
Maybe i am being overly cynical - God knows my outlook is less than rosy these days .
There is no turning back after the fog lifts , that i know .
I wish in some ways i were still ' naive ' .
Ignorance is bliss and all that .
In reality , i am praying and hoping that something , anything will change .
We have to start somewhere .
I have to keep that hope alive , somehow.
For my son .
(forced by the anti-trust lawsuit brought on by the courageous Attorney General Blumenthal of Connecticut )have come and gone recently.
Most people didn't even hear about it.
I lamely posted it on Facebook and Twitter hoping to spread the word.
It would have been nice to see it on the evening news .
These hearings were an important first step in recognizing the threat this seemingly
innocuous disease actually has become. It is a complicated and evolving form of bacteria that is easily transmitted and not easy to eradicate once it finds a home inside a human host.
The percentage of people who catch it early enough to have effective treatment is dwindling.
There are many new strains and they are constantly evolving and adapting . new co-infections have been discovered - viruses , bacterium and parasites that complicate treatment and complete recovery. This is NOT the simple disease the IDSA wants you to believe it is.
Many , such as myself and my husband are left with lingering and myriad health problems.
Some of which can prove fatal. People have died from Lyme Disease - it usually is listed as
Heart failure , stroke or other maladies but many are the result of long-term undiagnosed or under-treated Lyme Disease and co-infections. A recent Yale study revealed that 90% of a sampling of brain tissue from Alzheimer victims contained Borrelia Burgdorferi , the bacteria that causes Lyme Disease. This has been seen in those diagnosed with ALS, MS , Bi-Polar Disorder , Lupus , Chronic Fatigue Syndrome and Fibromyalgia as well as many other ' unexplained' illnesses. The evidence is mounting and so are the statistics.
When there are too many of us , change will come.
But what do we do in the meantime when a handful of powerful organizations have hog-tied honest researchers , scientists , doctors and patients who have little to gain from their greed and underhanded censorship ?
What do the sick do until then when the easy cure '30 days of doxycycline' fails us ?
The Hearings were important but nothing has really changed. Yet.
Lyme Disease is epidemic in the continental US the health of thousands are at stake and it seems no one cares . Will anything even come of it ?
The IDSA heard much testimony , including scientific research it had previously refused or banned . Many dissenting viewpoints were heard ( finally ) but this was not a public forum - the IDSA closed it to the public and media . What does this tell you ?
I do not have much hope when the greater public at large is purposely kept in the dark.
This includes well intentioned physicians and health care policy makers.
If the word does not come on down from on high - we will continue to be mis-diagnosed , mis-treated and ignored.
The public is purposely kept in the dark about many illnesses that have patents on them ! This seems ludicrous but i assure you it is true. What's the saying ? " Follow the money "...
No one knows because important information and scientific study is being suppressed by those who have a financial interest ( and hold patents on disease) for a vaccine. If more than one strain exists , if it can hide in the tissues , change form , exist with co-infections than a LYME DISEASE VACCINE WILL NOT WORK ! The public would reject it and all that money and research slotted for it would be lost profit . The first vaccine in the eighties- Lyme Rix was a bomb - it actually caused Lyme Disease in some of the public and was quickly pulled off the market under the PR spin of
" poor sales" . A form of it is still being used on Dogs. A 'salvage'operation?
Flu vaccines run some of the same risks - most people get them without question- whether they are risky or actually effective doesn't seem to matter .
We SHOULD question why .
The government and its institutions like the NIH do not have our best interests at heart even though they were set up supposedly for that very reason . Big business has gotten a hold on every corner of the research dollar . Big Pharma IS Big Brother .
Then there's chronic illness and the healthcare system . Don't even get me started ...
NO ONE wants to pay for it. Long-term treatment for anything is greatly frowned upon.
Private insurance rejects you , HMO's deny claims and paying out of pocket is all that is left.
IF you can find a good doctor who is knowledgeable about tick-borne infections to treat you !
Even then it is precious little. Proper and effective treatment is in its infancy even though these
micro-organisms have been around for quite some time. We are all still just guinea pigs , even when good hearted doctors are trying to heal us and reduce our suffering - they are only guessing without the help of more research and the organizations that SAY they are protecting us.
The new Healthcare Reform , sadly, will do little to change this.
It is a start and reform is needed but a long way from securing health for the public.
Until you take the profit out of health care things will continue as usual , regardless how many more people are 'covered'. This is a truth many are not willing to hear.
Especially , the chronically ill .
We will be left out to go away and quietly suffer - again.
Maybe i am being overly cynical - God knows my outlook is less than rosy these days .
There is no turning back after the fog lifts , that i know .
I wish in some ways i were still ' naive ' .
Ignorance is bliss and all that .
In reality , i am praying and hoping that something , anything will change .
We have to start somewhere .
I have to keep that hope alive , somehow.
For my son .
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