Retrovirus discovered in patients with Chronic Fatigue Syndrome
Pam Weintraub - Author of Cure Unknown writes about Patient Abuse
Thursday, October 15, 2009
Friday, August 14, 2009
A Rambling Revelation
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.
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.
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 .
Thursday, May 28, 2009
When Life Gives You Lemons...
Living with Lyme Disease Series # 1Susan Schaeffer 2009 -all rights reserved
I am painting again.
It started as a thought , then an action.
I have dreamed for years of trying my hand at encaustic painting - as a viable way to combine my love for various mediums and be able to work with the luminous , multi-layered effects of wax. It is an old media
( more than 2500 years old ) yet can be used in so many glorious and inventive ways that it is thoroughly modern , too .
It has the immediacy of Sumi painting and the Old World glow of the ancients , layers of luminosity and depth , it is scrapeable , sculptable, and allows for many 'happy accidents' - a zen quality i love and appreciate.
I am hoping to eventually combine photos, painting, drawing and collage elements in order to achieve the true melding of all my interests and achieve a cohesive style that is uniquely my own.
I don't know why i waited so long to do this . I am just glad that i am doing it now.
Could it be some good will actually come out of all of the suffering ?
I'd like to think so .
That's why i decided to start with a series of Lyme Disease paintings - to help me work through my struggle , to try and find beauty in the ugliness and to make peace with what is beyond my understanding or control. This is my first work . I hope to be able to work on many more in the coming months.
Thursday, May 21, 2009
Thursday, May 14, 2009
May Flowers
Well , today i hit my three month mark for Lyme Treatment. I have had this disease a long time - but exactly how long is a mystery. After combing through my health history back to my childhood - there are some unexplained coincidental patterns to be found. Lyme can infect a person and with a healthy immune system can keep its ravages in check- until a immune system is overwhelmed and can no longer hold it at bay. Multiple exposures can add up to more problems as well as more virulent strains and the presence of co-infections. It is a complicated business.
My LLMD believes the two surgeries i had in as many years and the stresses of having a child left my immune system in a compromised position , allowing for my latest exposure ( September 08) to completely wipe out my already struggling last defense. I got hit hard.
I have been terribly ill since October 2008 and wasn't diagnosed until February 2009 when i insisted on thorough bloodwork from my PCP. I knew something was terribly wrong. I even believed i had a 'parasite' of some kind.
My PCP is the one who called me with the results " I know why you have been so sick - you have Lyme Disease " . I didn't believe her at first. The first test was negative.
I started to read everything i could find on Lyme Disease. It started to all make sense, as all the pieces of my health's puzzle started falling into place. I remembered a tick incident in the late summer. A month later my health took a nosedive. It all started with the 'flu' . Sinus , ear, eye, upper respiratory and bladder infections followed.
My Western blot came back positive and since that day there was no turning back.
I was given the standard 28 days of doxycycline but little changed. I have been to the allergist , the Infectious Disease doctors , the E.N. T. specialist and the Neurologist. I had EKG's , Scans and Ultrasounds. Nothing was 'structurally' wrong with me.
My PCP thought i still had Lyme Disease as nothing had changed except a few infections clearing up. She tried to get advice on how to treat me. No one offered. It was as if she hit a invisible wall. She was frustrated . I was mad. They weren't touching it with a ten foot pole. I was on my own .
I continued to read all i could on the subject and decided it was time to go off the grid. I was lucky enough to find my LLMD through a referral - a woman i was aquainted with who is a Massage Therapist was working with another woman who was recovering from Lyme Disease after three devastating and crippling years of misdiagnoses. Her doctor after three short months was already reversing her paralysis and inability to speak. She pleaded with me to go see him before i got any worse. I called everyday , but he wasn't taking any new patients , being overloaded with Lymies from near and far. I kept calling. I got his wife on the phone one day and she patiently listened to my sob story - how i was dragging myself around the floor in afternoons trying to stay conscious so i could care for my toddler . My husband had fallen ill , too. We were drowning. She threw us a lifeline by taking our story to her husband and he agreed to take us on. I have been in treatment since March 2009.
I was re-tested extensively and while the Lyme seems to be in hiding , i tested positive for Babesia Duncani and a Bartonella- like organism. This complicates matter but at least we know who the all the enemies are now.
I am at the three month mark and have seen remarkable improvement. 50% of my symptoms have all but disappeared ( i had roughly 38 marked symptoms , including most neurological symptoms associated with Lyme Disease) I regained my cognitive abilities to a great degree , pain was highly decreased, vision restored to almost normal , energy increased exponentially. I still have many 'issues' but i am definitely on the upswing . My LLMD remarked that my swift response to my protocol was ' a very good sign' and that we could step up treatment now
I am starting on Mepron tomorrow for the Babesia and my abx are being increased slightly , too. I am feeling very hopeful and happy with my progress. I have a long way to go but I feel very fortunate to have found such support and care in a relatively short amount of time.
I can only pray that by making the public more aware of this insidious disease , more Doctors will become educated and will stand behind their patients to promote awareness and change in the current treatment guidelines. There are not enough Doctors who want to help us , let alone know how - more research and funding will only come if enough of us come together and insist on it. There seems to be a tide of awareness gathering power lately and this is a good sign, too. I am proud to be a part of it , if only in a small way, as i continue to fight for my health.
Monday, May 11, 2009
Friday, May 1, 2009
My New Best Friend
No , it's not another co-infection ! ; )
I recently purchased a Richway Infra-red Bio-Mat for as a therapeutic adjunct to my current Lyme Disease protocol. I did some research on the ability of infra-red to immobilize and/or kill spirochetes and other bacteria , viruses , etc. It is very compelling and i would love if we could build an infra-red sauna and have it in our yard to try out this theory.
It looks as if that may be possible in the future but not at the current time so i decided on getting the BioMat instead.
The BioMat uses infrared heat within its core to cause a false 'fever' in the body which helps destroy Lyme & friends and then as you sweat - out go the toxins . That of course is an over- simplified version of what happens but it covers the basics.
The infra-red heat which is EM-free helps to warm up your core , gets blood flowing, maximizes organ activity and flushes the system of toxins hiding out in the fatty tissues of your body . It heats muscles and joints and your skin stays amazingly cool ! Bottom line - it FEELS good.
I hope it also does a number on the Lyme & Co. , too but in the meantime it feels like heaven.
It's a win-win , as far as i am concerned. Everything used to treat this disease is ' experimental' at this point in time , unfortunately. As long as it isn't dangerous , i'll try it.
So far so good - The BioMat is AMAZING !
I have done several 'sweat' sessions and it is very similar to a sauna session, but easier.
It eases the aches and pains and calms down the nerve endings - all a very real and persistent symptom of chronic Lyme Disease. I really feel refreshed after following up with a nice shower.
You can also use lower heat setting for pain relief or help sleeping, too.
I found myself constantly arranging and re-arranging an oddball set of microwavable heating pads to my various 'sore' spots and needless to say this in itself was a pain . How much nicer is it to plug this mat in , set the temperature and lay down on it for however long i want or need to ?
It wasn't cheap , but worth EVERY plastic penny .
I don't know if it is pure coincidence but i have felt a lot better the last few days.
I will keep you posted on its effectiveness .
Now , If you will excuse me i have a 'date' with Mat.
Learn more here :
The Science behind Infra-red technology used in Medicine
BioMat Health
I recently purchased a Richway Infra-red Bio-Mat for as a therapeutic adjunct to my current Lyme Disease protocol. I did some research on the ability of infra-red to immobilize and/or kill spirochetes and other bacteria , viruses , etc. It is very compelling and i would love if we could build an infra-red sauna and have it in our yard to try out this theory.
It looks as if that may be possible in the future but not at the current time so i decided on getting the BioMat instead.
The BioMat uses infrared heat within its core to cause a false 'fever' in the body which helps destroy Lyme & friends and then as you sweat - out go the toxins . That of course is an over- simplified version of what happens but it covers the basics.
The infra-red heat which is EM-free helps to warm up your core , gets blood flowing, maximizes organ activity and flushes the system of toxins hiding out in the fatty tissues of your body . It heats muscles and joints and your skin stays amazingly cool ! Bottom line - it FEELS good.
I hope it also does a number on the Lyme & Co. , too but in the meantime it feels like heaven.
It's a win-win , as far as i am concerned. Everything used to treat this disease is ' experimental' at this point in time , unfortunately. As long as it isn't dangerous , i'll try it.
So far so good - The BioMat is AMAZING !
I have done several 'sweat' sessions and it is very similar to a sauna session, but easier.
It eases the aches and pains and calms down the nerve endings - all a very real and persistent symptom of chronic Lyme Disease. I really feel refreshed after following up with a nice shower.
You can also use lower heat setting for pain relief or help sleeping, too.
I found myself constantly arranging and re-arranging an oddball set of microwavable heating pads to my various 'sore' spots and needless to say this in itself was a pain . How much nicer is it to plug this mat in , set the temperature and lay down on it for however long i want or need to ?
It wasn't cheap , but worth EVERY plastic penny .
I don't know if it is pure coincidence but i have felt a lot better the last few days.
I will keep you posted on its effectiveness .
Now , If you will excuse me i have a 'date' with Mat.
Learn more here :
The Science behind Infra-red technology used in Medicine
BioMat Health
Sunday, April 26, 2009
Comments
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.
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.
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.
Friday, March 27, 2009
Some Good News
ok - i am going to cautiously accept this news as GOOD - Colin is not exhibiting any symptoms and appears to be in great health - and with an acknowledgment of the unreliability of the testing that is currently out there- with that one small caveat - i am going to say with some measure of assuredness that COLIN DOES NOT HAVE LYME DISEASE !
I need to go over the tests with his Pediatrician when she returns from vacation and i will keep a watchful eye on him , nonetheless , but the preliminary word is that he is negative for Borrelia Burgdorferi . I pray it stays that way FOREVER. I never want him to go through what his father and i are enduring. He is so pure and sweet and full of life and i just need him to stay that way for as long as is humanly possible. Isn't that every mother's dream ?
I want to cry tears of relief and joy but i have to be honest i am afraid of jinxing it.
When i am at my wit's end i tend toward superstition . ( salt over shoulder , three hail mary's )
i just want him to be ok.
I have to remember to stay in the present moment and accept what IS.
My baby boy is ok, right here, right now.
ok, breathe.
Thanks to everyone out there waiting with held breath, too.
i really appreciate all of your love and support these days.
It helps me get through . It really does.
I need to go over the tests with his Pediatrician when she returns from vacation and i will keep a watchful eye on him , nonetheless , but the preliminary word is that he is negative for Borrelia Burgdorferi . I pray it stays that way FOREVER. I never want him to go through what his father and i are enduring. He is so pure and sweet and full of life and i just need him to stay that way for as long as is humanly possible. Isn't that every mother's dream ?
I want to cry tears of relief and joy but i have to be honest i am afraid of jinxing it.
When i am at my wit's end i tend toward superstition . ( salt over shoulder , three hail mary's )
i just want him to be ok.
I have to remember to stay in the present moment and accept what IS.
My baby boy is ok, right here, right now.
ok, breathe.
Thanks to everyone out there waiting with held breath, too.
i really appreciate all of your love and support these days.
It helps me get through . It really does.
Wednesday, March 25, 2009
Cold Feet, Cold Heart
I had a really bad day today.
It was an 'off" day in more ways than one.
To start with ( no offense PC people) i had to write this post on a PC.
After many years a Mac afficianado , i hate trying to figure out a PC ( and with Lyme Brain - which remembers nothing ) especially late at night and after the hot water runs out when i am trying to fill my bath !
Uggh. A perfect ending to a rotton day.
MY hubs , donned in a white Hazmat suit , goggles and respirator ( i kid you not - i took pictures to be posted later) sprayed the yard and environs with toxic chemicals today to kill the ticks that have been breeding in our yard since last summer. It literally hurt my heart.
Anyone that knows me can attest to the fact that i am a strictly Organic girl.
i believe in the Diversity of Life .
Lyme Disease has changed that one simple credo , forever.
Ticks no longer fit into my scheme of things. I fear and loathe them.
I tried to choose the least harmful and bio-degradable perethin based insecticide to keep the
carnage to the rest of Nature's bounty to a minimum but it still killed a little part of me along with the
creepy arthropods . It stung like a bee' s sting.
It was either that or never step foot in my garden , watch Colin run naked through the flowers with abandon , or let Nooni play hide and seek with the squirrels that live in our Linden tree. I chose the poison pill.
My heart felt poisoned all day as a result.
There is a lot of stress to keep at bay these days.
LD also makes one prone to irritability and emotional outbursts and they were all on board today , too.
It made for a tough day all around.
But as they say -
Tomorrow is another day....
It was an 'off" day in more ways than one.
To start with ( no offense PC people) i had to write this post on a PC.
After many years a Mac afficianado , i hate trying to figure out a PC ( and with Lyme Brain - which remembers nothing ) especially late at night and after the hot water runs out when i am trying to fill my bath !
Uggh. A perfect ending to a rotton day.
MY hubs , donned in a white Hazmat suit , goggles and respirator ( i kid you not - i took pictures to be posted later) sprayed the yard and environs with toxic chemicals today to kill the ticks that have been breeding in our yard since last summer. It literally hurt my heart.
Anyone that knows me can attest to the fact that i am a strictly Organic girl.
i believe in the Diversity of Life .
Lyme Disease has changed that one simple credo , forever.
Ticks no longer fit into my scheme of things. I fear and loathe them.
I tried to choose the least harmful and bio-degradable perethin based insecticide to keep the
carnage to the rest of Nature's bounty to a minimum but it still killed a little part of me along with the
creepy arthropods . It stung like a bee' s sting.
It was either that or never step foot in my garden , watch Colin run naked through the flowers with abandon , or let Nooni play hide and seek with the squirrels that live in our Linden tree. I chose the poison pill.
My heart felt poisoned all day as a result.
There is a lot of stress to keep at bay these days.
LD also makes one prone to irritability and emotional outbursts and they were all on board today , too.
It made for a tough day all around.
But as they say -
Tomorrow is another day....
Monday, March 23, 2009
Checking my Pulse
My LLMD is trying something called "pulsing" with my new anti-biotic therapy . I am a couple days on - one day off, with the theory being give the Borrelia & Co. a chance to come out of hiding little by little and pick them off that way. Otherwise , after being on anti-biotics for so long the buggers get wise and see you as 'hostile territory and encyst or hide in your tissues ( harder to target with meds. ) until the coast is clear.
That is why a lot of Lymie's feel good on meds and once off start to go downhill again.
So , the idea is no abx for a few days - then you beef up on Magnesium , which they feed on and hope that they want to play hide and seek and then BLAM ! your meds can do their job , destroying them more efficiently. It works for some people and since i was at a standstill with lots of bad stuff going on we are trying it.
Today is an 'off' day and after a day of feeling very few symptoms - they are back in FULL force. I have been extremely fatigued since noon and my lower extremities are tingly and cold. Both eyes are doing the cha-cha today and i have joint pain in my hands and shoulders . My neck is stiff and i am spacey and irritable.
I think it is working ;(~
- though it is really too early to tell - i have only been on this new protocol since Friday but i had a great day Saturday and Sunday while i was taking my new anti-bios and supplements. I have to journal daily and keep track of any changes and at the end of the month we will know more.
I still have a lot of tests out there and still some unanswered questions so it is far from 'set' but i am looking for any sign that SOMETHING is working . I need to know that there is a light at the end of this
very long , very dark tunnel .
I think i see a spark of light off in the distance but it could just be my optical neuritis getting the best of me. It's hard to tell when you have LD . It comes and goes.
Just like my mood these days.
i remain optimistic , regardless.
That is why a lot of Lymie's feel good on meds and once off start to go downhill again.
So , the idea is no abx for a few days - then you beef up on Magnesium , which they feed on and hope that they want to play hide and seek and then BLAM ! your meds can do their job , destroying them more efficiently. It works for some people and since i was at a standstill with lots of bad stuff going on we are trying it.
Today is an 'off' day and after a day of feeling very few symptoms - they are back in FULL force. I have been extremely fatigued since noon and my lower extremities are tingly and cold. Both eyes are doing the cha-cha today and i have joint pain in my hands and shoulders . My neck is stiff and i am spacey and irritable.
I think it is working ;(~
- though it is really too early to tell - i have only been on this new protocol since Friday but i had a great day Saturday and Sunday while i was taking my new anti-bios and supplements. I have to journal daily and keep track of any changes and at the end of the month we will know more.
I still have a lot of tests out there and still some unanswered questions so it is far from 'set' but i am looking for any sign that SOMETHING is working . I need to know that there is a light at the end of this
very long , very dark tunnel .
I think i see a spark of light off in the distance but it could just be my optical neuritis getting the best of me. It's hard to tell when you have LD . It comes and goes.
Just like my mood these days.
i remain optimistic , regardless.
Thursday, March 19, 2009
Hope is a thing with feathers...
Today was my appointment with a LLMD.
That's Lyme Literate Medical Doctor to the uninitiated . What exactly is an LLMD ?
It means a brave , caring MD who has decided to go against mainstream politics and help sick people who aren't being helped. They are few and far between and NOT easy to find nor get an appointment with . They are overflowing with desperate men, women and children who need their compassion and even more importantly , their medical advice and treatment for a disease BIG MEDICINE has turned its back on.
They are pioneers and scientists and detectives and THEY are interested not in Lyme Disease as phenomenon but in helping Lyme Disease patients get better.
That was the rumor , anyway.
After much research , run-around and not a small bit of sly detective work ( big pat on back to yours truly and an even BIGGER thank you to all of the kind souls who shared information with me )- i arrived at a name.
Along with the name came rave reviews so i took a chance and called. And called . Kept calling.
A LIVE BODY ! A conversation ensued - "not currently accepting new patients - check back in May "
Another call - begging pleading crying- got the doctor's wife on the phone - BINGO ! A heartbeat !
"I'll see what i can do - no promises- but i will try " That's all i wanted . Someone to try for me.
I got a call back AND an appointment.
That was today . I was nervous and i was just the least bit hopeful - but by this time i was a bit jaded , too.
I pretty much trust no one on this subject. There is no ONE answer and i am wary of anyone who claims there is. I am living proof .
Well , i got answers but no easy answer.
There is no miracle cure for disseminated Lyme Disease. I kind of already knew that but i was hoping for a 'miracle' . Who doesn't when they or someone they love is ill ?
There are different experimental protocols ( aren't they all , really ? ) and no one protocol fits everyone.
After 2 and 1/2 hours of rigorous Q & A - i finally felt heard and validated. My GP is caring and she tried but she couldn't get anyone to advise her outside of " 28 days of Doxycycline" . That didn't work for me .
I got worse. Her hands were tied. She was frustrated and I was left feeling like i was quickly reaching a dead end.
This LLMD unshackled my hope. They will now work together to get me (us) well.
More testing , more wait and see, but a new , more holistic approach with new anti-biotics - in a different combination . Who knows if it will help ?
I just know i am willing to try something new that approaches the disease in a comprehensive and directed way- one that works with my body and not against it.
That means diet changes, supplements , drugs and patience.
I have it all on board except the latter - THAT i will have to work on .
It is a start , though.
Begin at the Beginning ...
That's Lyme Literate Medical Doctor to the uninitiated . What exactly is an LLMD ?
It means a brave , caring MD who has decided to go against mainstream politics and help sick people who aren't being helped. They are few and far between and NOT easy to find nor get an appointment with . They are overflowing with desperate men, women and children who need their compassion and even more importantly , their medical advice and treatment for a disease BIG MEDICINE has turned its back on.
They are pioneers and scientists and detectives and THEY are interested not in Lyme Disease as phenomenon but in helping Lyme Disease patients get better.
That was the rumor , anyway.
After much research , run-around and not a small bit of sly detective work ( big pat on back to yours truly and an even BIGGER thank you to all of the kind souls who shared information with me )- i arrived at a name.
Along with the name came rave reviews so i took a chance and called. And called . Kept calling.
A LIVE BODY ! A conversation ensued - "not currently accepting new patients - check back in May "
Another call - begging pleading crying- got the doctor's wife on the phone - BINGO ! A heartbeat !
"I'll see what i can do - no promises- but i will try " That's all i wanted . Someone to try for me.
I got a call back AND an appointment.
That was today . I was nervous and i was just the least bit hopeful - but by this time i was a bit jaded , too.
I pretty much trust no one on this subject. There is no ONE answer and i am wary of anyone who claims there is. I am living proof .
Well , i got answers but no easy answer.
There is no miracle cure for disseminated Lyme Disease. I kind of already knew that but i was hoping for a 'miracle' . Who doesn't when they or someone they love is ill ?
There are different experimental protocols ( aren't they all , really ? ) and no one protocol fits everyone.
After 2 and 1/2 hours of rigorous Q & A - i finally felt heard and validated. My GP is caring and she tried but she couldn't get anyone to advise her outside of " 28 days of Doxycycline" . That didn't work for me .
I got worse. Her hands were tied. She was frustrated and I was left feeling like i was quickly reaching a dead end.
This LLMD unshackled my hope. They will now work together to get me (us) well.
More testing , more wait and see, but a new , more holistic approach with new anti-biotics - in a different combination . Who knows if it will help ?
I just know i am willing to try something new that approaches the disease in a comprehensive and directed way- one that works with my body and not against it.
That means diet changes, supplements , drugs and patience.
I have it all on board except the latter - THAT i will have to work on .
It is a start , though.
Begin at the Beginning ...
Wednesday, March 18, 2009
Tuesday, March 17, 2009
And then there were Two...
My husband who also had mysterious ailments throughout last year was tested for Lyme per my Drs. recommendation and Voila ! both his tests ( ELISA & Western Blot ) came back highly positive for Lyme.
We had a stone walk and wall put in last summer and i recalled pulling a tick from his scalp behind his ear .He had been to the stone quarry earlier in the day and remarked that it was 'loaded with ticks' .
He woke me in the middle of the night sensing something crawling in his hair. I found two ticks crawling and another already embedded deep in his skin. I never felt my tick bite - never saw it coming. I don't know why that bugs me but it does.
I pride myself on being an 'aware' person. I don't like the idea of something so creepy being able to sneak up on me.
I remember at the time of my husband's tick bite quoting my then 'official' knowledge " Relax , hon - it has to be embedded for 48 hours before it can do any harm. We'll watch for the bulls-eye , anyway you are fine if you don't have it.
I rue that day now.
It turns out ( regardless that the NIH & CDC and IDSA still tow the old line) there is new evidence ( scientific lab-based studies AND documented patient histories) that anytime a tick starts to feed transmission of tick-borne disease can occur . It turns out that in reality , only about 50% of people ever get what is termed as a classic bulls-eye rash. If Lyme Disease is not caught in the first few weeks ( maybe less depending on the individual) BEFORE the bacteria disseminates through the body , then a standard 'cure' of 10-28 days of doxycycline is likely not to reach all of the bacteria. You have a VERY good chance of staying ill or relapsing if that is the case.
If the Lyme bacteria ( Borrelia Burgdorfii) has entered your central nervous system or other tissues and organs the doxycycline will be unable to reach it all.
Now considering that Lyme Disease is caused by a Spirochete similar but actually quite a bit more complex than syphilis and syphilis is routinely and aggresively treated for months- doesn't it cause one to pause and wonder why , when people continue to exhibit the SAME symptoms after a short course of treatment , they are still sick if 28 days of Doxycline is such a sure cure ? I have read in some studies that unless you maintain blood levels of 400-600 mgs of doxycycline , borrelia will survive. Yet , the standard - what i am on right now - is only 100 mg twice a day. My husband is on the same . Why is this the standard ?
I am in my third week and no better than when i started. I fear i am going to be one of those people who gets lost in the Lymelands of medical controversy and policy.
This is why after an exhaustive search i am going to see a specialist who TREATS Lyme Disease UNTIL they get better . I have had this for more that six months and only diagnosed in the last few weeks - i am not willing to take a "wait and see" approach with my health. Sorry.
Yes,it is true - some people get better easily - IF caught early .
Most late diagnoses are not so simply cured- regardless what the NIH & IDSA would like you to believe.
There are THOUSANDS of sick children and adults to attest to that fact.
The powers that be would have you believe they are all under some mass delusion or have " Post-Lyme " which is an unexplained set of symptoms present after the bacteria no longer exists in the body. You guessed it - there is NO treatment for it. Chronic Lyme simply does not exist according to these 'experts'.
Inconvenient for them that there is a growing body of evidence to the contrary. Now if somebody would do something about it that would be great.
To be fair there are a number of brilliant scientists and doctors without a personal agenda who are willing to take on the status quo and the current mainstream view towards Lyme DIsease. They are more concerned with human suffering and healing than prestige, power and the almighty dollar.
Unfortunately there is a great deal of pressue out there to " tow the party line' as more people continue to be ill . I can only hope and pray that this changes soon . People have a right to know and to be provided proper health care .
This is but one very important issue in the National Health Crisis .
It has hit home for me and my family.
i for one , will fight as long as i can and as hard as i can until someone listens. Lyme Disease is NOT going away . And yes, you SHOULD be afraid.
Be VERY afraid.
Please read my first post "ticker tape parade for my story of discovery.
see links on sidebar for more info on Lyme Disease.
To be fair -go to the CDC and NIH, IDSA sites and see how vague and concise they are about an illness that is agreed by everyone concerned to be 'complex'. Then talk to people who have it.
Who do you believe ?
We had a stone walk and wall put in last summer and i recalled pulling a tick from his scalp behind his ear .He had been to the stone quarry earlier in the day and remarked that it was 'loaded with ticks' .
He woke me in the middle of the night sensing something crawling in his hair. I found two ticks crawling and another already embedded deep in his skin. I never felt my tick bite - never saw it coming. I don't know why that bugs me but it does.
I pride myself on being an 'aware' person. I don't like the idea of something so creepy being able to sneak up on me.
I remember at the time of my husband's tick bite quoting my then 'official' knowledge " Relax , hon - it has to be embedded for 48 hours before it can do any harm. We'll watch for the bulls-eye , anyway you are fine if you don't have it.
I rue that day now.
It turns out ( regardless that the NIH & CDC and IDSA still tow the old line) there is new evidence ( scientific lab-based studies AND documented patient histories) that anytime a tick starts to feed transmission of tick-borne disease can occur . It turns out that in reality , only about 50% of people ever get what is termed as a classic bulls-eye rash. If Lyme Disease is not caught in the first few weeks ( maybe less depending on the individual) BEFORE the bacteria disseminates through the body , then a standard 'cure' of 10-28 days of doxycycline is likely not to reach all of the bacteria. You have a VERY good chance of staying ill or relapsing if that is the case.
If the Lyme bacteria ( Borrelia Burgdorfii) has entered your central nervous system or other tissues and organs the doxycycline will be unable to reach it all.
Now considering that Lyme Disease is caused by a Spirochete similar but actually quite a bit more complex than syphilis and syphilis is routinely and aggresively treated for months- doesn't it cause one to pause and wonder why , when people continue to exhibit the SAME symptoms after a short course of treatment , they are still sick if 28 days of Doxycline is such a sure cure ? I have read in some studies that unless you maintain blood levels of 400-600 mgs of doxycycline , borrelia will survive. Yet , the standard - what i am on right now - is only 100 mg twice a day. My husband is on the same . Why is this the standard ?
I am in my third week and no better than when i started. I fear i am going to be one of those people who gets lost in the Lymelands of medical controversy and policy.
This is why after an exhaustive search i am going to see a specialist who TREATS Lyme Disease UNTIL they get better . I have had this for more that six months and only diagnosed in the last few weeks - i am not willing to take a "wait and see" approach with my health. Sorry.
Yes,it is true - some people get better easily - IF caught early .
Most late diagnoses are not so simply cured- regardless what the NIH & IDSA would like you to believe.
There are THOUSANDS of sick children and adults to attest to that fact.
The powers that be would have you believe they are all under some mass delusion or have " Post-Lyme " which is an unexplained set of symptoms present after the bacteria no longer exists in the body. You guessed it - there is NO treatment for it. Chronic Lyme simply does not exist according to these 'experts'.
Inconvenient for them that there is a growing body of evidence to the contrary. Now if somebody would do something about it that would be great.
To be fair there are a number of brilliant scientists and doctors without a personal agenda who are willing to take on the status quo and the current mainstream view towards Lyme DIsease. They are more concerned with human suffering and healing than prestige, power and the almighty dollar.
Unfortunately there is a great deal of pressue out there to " tow the party line' as more people continue to be ill . I can only hope and pray that this changes soon . People have a right to know and to be provided proper health care .
This is but one very important issue in the National Health Crisis .
It has hit home for me and my family.
i for one , will fight as long as i can and as hard as i can until someone listens. Lyme Disease is NOT going away . And yes, you SHOULD be afraid.
Be VERY afraid.
Please read my first post "ticker tape parade for my story of discovery.
see links on sidebar for more info on Lyme Disease.
To be fair -go to the CDC and NIH, IDSA sites and see how vague and concise they are about an illness that is agreed by everyone concerned to be 'complex'. Then talk to people who have it.
Who do you believe ?
Ticker Tape Parade
It all started with an 'allergy' attack before leaving for a trip up North to visit friends in N.Y. and my folks in Western Ma. I had sneezing fits to beat the band . I thought the air filter in the HVAC needed to be changed . It was early October.
We traveled to W. Ma. first to spend time with my family and stayed at the Lord Jeffrey Inn in Amherst. The foliage was peaking and gorgeous and we strolled around town enjoying the quaint New England scenery. It was warm enough for bees to be out although in the morning a band of bumblebees on the asters in front of our Inn stood frozen in time from the frost laden dawn. I felt somewhat frozen , too as my allergies turned into a head cold . I was achy and tired but thought nothing of it.
We arrived a few days later in New Jersey to stay with friends . My head cold turned into a full blown flu and we cut our trip short to head home.
I did all of my normal holistic healing tricks ( vitamin C , raw honey, zinc, nasal washing , probiotics, chicken soup ) but instead of feeling better in a few days , my nose completely shut down , no air , no sense of smell or taste and i had a raging ache in my head , jaw and face. My neck was so stiff i could barely turn it.
After a month of illness i gave up and went to my GP. She diagnosed an acute sinus infection ( something i have never had before ) and put me on an antibiotic . It barely made a dent but by the end of the week i felt some relief so i thought it was on the way out. A few days later it roared back stronger than ever and i started feeling dizzy.Back to the Doc. She put me a stronger anti-biotic Levaquin which came with a short novella of warnings and side effects from the pharmacy. I was desperate and i took it .
That night i had wildly violent and bizarre dreams . I woke up profusely sweating and felt all tingly . I blamed the Levaquin but since i wasn't dying i kept taking it.
I continued to feel dizzy , tingly and nauseous but i soldiered on . Some of these were listed side-effects afte rall . Nothing to be concerned about right ?
By the end of the Levaquin i could feel the sinus infection lifting but my ears started ringing , felt painful and my hearing was muted- like i was perpetually underwater.
I decided to go see an Ear Nose And Throat specialist and see what was going on.
I was vacuumed and examined and given another course of antibiotics - this time Amoxicillin. She suggested i see an allergist .
My sinus infection finally cleared up - not gone exactly but much better so that i could function fairly normally and the bizarre buzzing and tingling abated. My ears felt better , too. I had a battery of allergy tests and the results were " a slight allergy to house dust and mold " Nothing out of the ordinary.
A few weeks went by and i started running again , something i had let slip due to not feeling well . When i got back from my first run i felt good but when i looked in the mirror i was shocked. My face was all red and puffy like i had been skiiing in below freezing temps ! I passed it off as wind-burn ( something else i have never had except in the above scenario) .It lasted for the day then faded. Strange.
The next time i went for a run my hip felt on fire . I had been getting that same feeling in September and attributed it to an ITB injury. I must be getting old, i thought.
This time it didn't go away but persisted anytime i tried to exercise .
Even when i did yoga . That was really strange.Then it went away as mysteriously as it had appeared.
After two weeks of feeling 'well' i ended up having the same old probems with my sinus , ears and frequent headaches along with bone-crushing fatigue.
Now i was confused. Usually when i took good care of myself , got lots of rest , ate a healthy , organic diet , and exercised i felt great .
I decidedly did NOT feel great . I felt broken.
I was sick all throught the holidays barely comeing out of the 'Fog' for Christmas with my immediate family. I started thinking i had a hormone imbalance or something more sinister - could i have picked up a parasite ? I do like sushi , i am not a grem-phobe - i let the dog kiss me and i do not always wash evrything before i eat it. If it says pre-washed i don't always do it at home. Does anyone ?
I suffered through several more sinus infections , took antibiotics when weeks passed and i couldn't get rid of it . I would feel better for awhile and then BOOM something else would hit. It was near my birthday when i noticed burning when i would pee.
Oh no - a UTI , now ? I haven't had one in years .
i marched to my GP who was now starting to look at me funny . "what's wrong with you lately " she asked , not unkindly.
That's what i'd like to know.
My urine culture was negative but the Nurse Pratitioner gave me Cipro and said to come back in three days if it didn't clear up.
I was back .
And i had a sinus infection again , too .
And an upper respiratory virus .
I asked my GP to test me for anything and everything under the sun . Hormones, blood , thyroid, anyhting else she could think of and give me a complete work-up.
"This isn't me " I said , " I don't get sick like this and i heal fast . I feel tired ALL of the time no matter what i do . Something is wrong with me."
She agreed to do some tests to try and figure out what was going on .
Unbeknownst to me she added in a Lyme Disease two-tier test ( she had once contracted this in the 80's and always tested for it as a result ) . My tests came back and everything was normal - EXCEPT for the Western Blot test .
"I know why you are so sick ", she said over the phone " You have Lyme Disease"
My mind reeled . Everything i knew about Lyme disease ( not much, as i would soon learn) told me it couldn't be. "but i didn't have a rash "
"Not everyone gets it " she said. "It would explain all of your symptoms and inability to shake the infections. I am putting you on doxycycline for 28 days , that should take care of it "
I was speechless . For the first time in my life.
" okay" , i said and hung up the phone.
I went straight to work learning everything i could about Lyme Disease. I went to the CDC site and the NIH site . Not very much information and it was very concise and close-ended. I suspected there was more to learn.
Boy , was i ever right about that . I soon learned more that i ever cared to know about tick-borne disease , arrogant scientists, doctors and the organizations they run , the meddling and insensitivity of insurance companies, the thousands of suffering children and adults who are denied care , the controversy over 'official' diagnosis versus clinical observation and whether 'chronic lyme disease ' even exists- and the most frightening of all - the mercurial and morphing nature of the Borrelia Burgendorfii , the bacteria responsible for so much confusion and illness. The only thing all the 'Experts' can agree on is that there is much still unknown about this bacteria and the illness it causes.
In the meantime , a growing number of lost souls are stuck in the crossfire .
I am now one of them.
i am a "Lymie".
We traveled to W. Ma. first to spend time with my family and stayed at the Lord Jeffrey Inn in Amherst. The foliage was peaking and gorgeous and we strolled around town enjoying the quaint New England scenery. It was warm enough for bees to be out although in the morning a band of bumblebees on the asters in front of our Inn stood frozen in time from the frost laden dawn. I felt somewhat frozen , too as my allergies turned into a head cold . I was achy and tired but thought nothing of it.
We arrived a few days later in New Jersey to stay with friends . My head cold turned into a full blown flu and we cut our trip short to head home.
I did all of my normal holistic healing tricks ( vitamin C , raw honey, zinc, nasal washing , probiotics, chicken soup ) but instead of feeling better in a few days , my nose completely shut down , no air , no sense of smell or taste and i had a raging ache in my head , jaw and face. My neck was so stiff i could barely turn it.
After a month of illness i gave up and went to my GP. She diagnosed an acute sinus infection ( something i have never had before ) and put me on an antibiotic . It barely made a dent but by the end of the week i felt some relief so i thought it was on the way out. A few days later it roared back stronger than ever and i started feeling dizzy.Back to the Doc. She put me a stronger anti-biotic Levaquin which came with a short novella of warnings and side effects from the pharmacy. I was desperate and i took it .
That night i had wildly violent and bizarre dreams . I woke up profusely sweating and felt all tingly . I blamed the Levaquin but since i wasn't dying i kept taking it.
I continued to feel dizzy , tingly and nauseous but i soldiered on . Some of these were listed side-effects afte rall . Nothing to be concerned about right ?
By the end of the Levaquin i could feel the sinus infection lifting but my ears started ringing , felt painful and my hearing was muted- like i was perpetually underwater.
I decided to go see an Ear Nose And Throat specialist and see what was going on.
I was vacuumed and examined and given another course of antibiotics - this time Amoxicillin. She suggested i see an allergist .
My sinus infection finally cleared up - not gone exactly but much better so that i could function fairly normally and the bizarre buzzing and tingling abated. My ears felt better , too. I had a battery of allergy tests and the results were " a slight allergy to house dust and mold " Nothing out of the ordinary.
A few weeks went by and i started running again , something i had let slip due to not feeling well . When i got back from my first run i felt good but when i looked in the mirror i was shocked. My face was all red and puffy like i had been skiiing in below freezing temps ! I passed it off as wind-burn ( something else i have never had except in the above scenario) .It lasted for the day then faded. Strange.
The next time i went for a run my hip felt on fire . I had been getting that same feeling in September and attributed it to an ITB injury. I must be getting old, i thought.
This time it didn't go away but persisted anytime i tried to exercise .
Even when i did yoga . That was really strange.Then it went away as mysteriously as it had appeared.
After two weeks of feeling 'well' i ended up having the same old probems with my sinus , ears and frequent headaches along with bone-crushing fatigue.
Now i was confused. Usually when i took good care of myself , got lots of rest , ate a healthy , organic diet , and exercised i felt great .
I decidedly did NOT feel great . I felt broken.
I was sick all throught the holidays barely comeing out of the 'Fog' for Christmas with my immediate family. I started thinking i had a hormone imbalance or something more sinister - could i have picked up a parasite ? I do like sushi , i am not a grem-phobe - i let the dog kiss me and i do not always wash evrything before i eat it. If it says pre-washed i don't always do it at home. Does anyone ?
I suffered through several more sinus infections , took antibiotics when weeks passed and i couldn't get rid of it . I would feel better for awhile and then BOOM something else would hit. It was near my birthday when i noticed burning when i would pee.
Oh no - a UTI , now ? I haven't had one in years .
i marched to my GP who was now starting to look at me funny . "what's wrong with you lately " she asked , not unkindly.
That's what i'd like to know.
My urine culture was negative but the Nurse Pratitioner gave me Cipro and said to come back in three days if it didn't clear up.
I was back .
And i had a sinus infection again , too .
And an upper respiratory virus .
I asked my GP to test me for anything and everything under the sun . Hormones, blood , thyroid, anyhting else she could think of and give me a complete work-up.
"This isn't me " I said , " I don't get sick like this and i heal fast . I feel tired ALL of the time no matter what i do . Something is wrong with me."
She agreed to do some tests to try and figure out what was going on .
Unbeknownst to me she added in a Lyme Disease two-tier test ( she had once contracted this in the 80's and always tested for it as a result ) . My tests came back and everything was normal - EXCEPT for the Western Blot test .
"I know why you are so sick ", she said over the phone " You have Lyme Disease"
My mind reeled . Everything i knew about Lyme disease ( not much, as i would soon learn) told me it couldn't be. "but i didn't have a rash "
"Not everyone gets it " she said. "It would explain all of your symptoms and inability to shake the infections. I am putting you on doxycycline for 28 days , that should take care of it "
I was speechless . For the first time in my life.
" okay" , i said and hung up the phone.
I went straight to work learning everything i could about Lyme Disease. I went to the CDC site and the NIH site . Not very much information and it was very concise and close-ended. I suspected there was more to learn.
Boy , was i ever right about that . I soon learned more that i ever cared to know about tick-borne disease , arrogant scientists, doctors and the organizations they run , the meddling and insensitivity of insurance companies, the thousands of suffering children and adults who are denied care , the controversy over 'official' diagnosis versus clinical observation and whether 'chronic lyme disease ' even exists- and the most frightening of all - the mercurial and morphing nature of the Borrelia Burgendorfii , the bacteria responsible for so much confusion and illness. The only thing all the 'Experts' can agree on is that there is much still unknown about this bacteria and the illness it causes.
In the meantime , a growing number of lost souls are stuck in the crossfire .
I am now one of them.
i am a "Lymie".
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