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SCIENTISTS UNRAVEL GENOME SEQUENCE IN LYME DISEASE
Saturday, October 9, 2010
Thursday, July 1, 2010
Another Piece of the Puzzle
I have had TMJ ( or TMD ) for years . What is TMJ ( TMD) exactly ? A pretty good basic description is provided above . Just click on the picture .
I have a moderately severe case , which has only worsened since my Lyme infection . It would stand to reason as Lyme & Co-infections love to attack the joints and soft tissues of the body.
I initially think a rather severe car accident where i was hit head-on by a jeep that swerved out of its lane and into my Honda was what kicked it into high gear . I was rear-ended about a decade later on the Boston Turnpike by a kid who was texting in heavy stop and go traffic. Two NASTY cases of whiplash later and i had a chronic pain situation .
I had a dentist , chiropractor , neurologist , massage therapist and an acupuncturist all work on my TMJ issues over the years . All offered some measure of relief in varying degrees of success - at least to the point where i learned to live with it and be fairly functional , albeit with an abnormal amount of head/neck aches on a frequent basis.
The last few years it has gotten much worse and the pain has become intolerable. I just felt i had run out of feasible options . Surgery is out of the question as it has a very low success rate and i tend to be anti-surgery in the head/neck/back area unless one is completely immobilized and even then i think you should try other options first. Too much risk of nerve damage and not much improvement for the amount of trauma. My burnt out immune system and adrenals couldn't handle another surgery anyway . So what to do ?
I had thoroughly researched dentists for someone who was state of the art and more holistically inclined for Colin and a few TMJ specialists kept popping up - so i looked into them , too. It just so happens that the dentist i really liked for Colin has pioneered a new method for TMJ patients which he himself suffered from for many years. It caused him to go in a new direction in Dentistry and to further educate himself on less-invasive and healthier dentistry as a whole.
He became my dentist , too and on my third visit ordered an MRI after a lengthy interview .
It revealed that i had displaced discs on both side of my jaw - the right side much worse than the left . I have joint deterioration , worse on the right and 'adaptive arthritis' which curved my bone to prevent it from poking into my brain. WHOA. Having a hunch is one thing but having visual proof is another thing ! No wonder i have been in so much pain. So , once again , i have decided to place my trust in a pioneering doctor to try and heal what is still sick. A BIG leap of faith for me .
I trust him implicitly - he spent over an hour with me going over the mechanics of TMJ , connecting all of the dots and providing me with a lot of insight into how my TMJ has been slowing my progress in healing. He offered me several options for treatment and i chose his the method he developed with temporary orthodontics that re-train the jaw to allow my displaced discs to slip back into place. Being in constant pain drains your adrenals as they are constantly in 'flight or fight' mode , excreting cortisol and eventually not working at all. The endocrine system gets thrown off balance and hormones , thyroid , immune system - all can be compromised. Then the sympathetic nervous system kicks in and vision problems , dizziness , etc can start to occur. This explains the come-and-go nature of my remaining symptoms . Lyme cause all these things or can make them worse but it not always an active Lyme infection that is the culprit. After you get the beast under control , it is important to address the damage left in its wake and start working on rebuilding your bodies systems. That is my new goal.
My insurance has denied anymore medication to treat my Lyme or Co-infections - even though i still have bloodwork that confirms the existence of at least two of these infections. SO ... it is on to PLAN B . I will be taclking the TMJ , then the Endocrine system and pursuing Herbal remedies for my passive infections . Samento & Banderol here i come ! One more fly in the ointment ~ My Epstein - Barr Virus has been re-activated since my Lyme infection so i will be addressing that , too. An ever uphill battle but one that i am fully engaged in and committed to winning. Stay tuned for progress !
* i also want to dedicate this latest post to my beloved cousin V. who so generously supports my quest for health in more ways than one . I love you so much.
Friday, May 14, 2010
Monday, April 26, 2010
BLACK THURSDAY : Bad News but No Big Surprise
Considering the politics, greed and ignorance behind the current Lyme Disease debate , is it any wonder the IDSA refuses to consider any 'evidence' outside of their own biased research or listen to the thousands of LD sufferers, ground-breaking research or brave or concerned Physicians who put their patients before the almighty dollar in order to try TRY to help their patients ??
Um , NO.
But it is supremely disappointing . And maddening that they can get away with it. With doing NOTHING.
There were many first hand testimonies available , both children and adult , the Physicians who treat them and the researchers who keep pushing to find an answer when no one else will. Why are we being ignored ?
We are out there.
Waiting.
No , antibiotics are not a 'cure'. Not for 30 days - not for years. No one is really saying that- we are making progress in some treatments but there is no one answer.
One thing is certain - it HELPS, It makes some of us better . It puts some of us in 'remission' so we can get on with our lives. It saves some of our lives by at least stopping the disease from progressing out of control. Since no one else has any better alternatives at the moment and lives are being ruined - why not let Doctors try and help their patients have a better quality of life ? We know the risks and those of us who choose to try long-term antibiotic therapy should have that choice.
Teenagers are routinely put on some of the same antibiotics for ACNE- for years ! What about those 'risks ' ?? Lyme Disease can stop your heart ! What is more worthy of a risk - unsightly zits that you eventually outgrow or a potentially life-threatening illness ? Fuzzy logic abounds.
What is never discussed at these 'forums' is the fact that BIG PHARMA ( linked to more than several members of the IDSA board ) own PATENTS on Lyme Disease. They want to hold the rights and the profits for a vaccine someday. Their last attempt failed when it was shown to CAUSE Lyme Disease in its first takers. They pulled Lyme-Rix and cited " Poor Sales" as the reason. The likelihood of a vaccine that would protect anyone from the dozens of Lyme strains that exist ( and quickly mutate into several forms ) is not only unlikely but most likely impossible and it would be useless against the hundreds of possible co-infections that ride along with the Lyme bacteria. So why not let research and trial and error continue among those of us who do care to find a CURE ? Not interested ? Then the rest of the Medical establishment can go back to trading stocks in Pharmaceuticals and prescribing anti-depressants ( that don't work) to the millions of undiagnosed disease sufferers out there. Some of us want REAL answers .
Obviously , IDSA is not interested in the truth.
As Lyme Sufferers , we just want to be well again and prevent this hell from happening to others. We deserve the right to search out and procure the healthcare that HELPS us , not to be silenced in the face of such a debilitating and poorly addressed health issue. We will not let you get away with being silent , either. I urge everyone to write to Atty. General Blumenthal and let him know he needs to call the IDSA on their blatant disregard for public health and safety until they admit there is much more to learn before administering a 'Final Word' decree that could endanger thousands of lives.
IDSA Create's Black Thursday for Chronic Lyme Disease Sufferers ~
PLEASE click above to follow link to read article.
From CALDA :
Why we all need to contact AG Blumenthal now
The review process for the 2006 IDSA Lyme guidelines came about because of a Settlement Agreement with Connecticut Attorney General Richard Blumenthal. But the IDSA didn't follow all the procedures laid down in that agreement. If they had, one of the worst of the guidelines would have been thrown out. The recommendation in question requires that a patient have a positive Lyme lab test in order to be diagnosed with Lyme disease. Since Lyme lab tests are notoriously unreliable, this requirement denies appropriate diagnosis and treatment to untold thousands of patients with Lyme disease.
Lyme Disease should remain a clinical diagnosis . Like many other diseases , tests are used only as a tool for additional confirmation .
Contact AG Blumenthal and tell him you want him to make sure the IDSA follows all the rules. The lives of Lyme patients and their families are at stake.
If you can, please fax the AG. If no fax, email or call.
(860) 808-5387 Fax
(860) 808-5040 Phone
email: attorney.general@po.state.ct.us
Um , NO.
But it is supremely disappointing . And maddening that they can get away with it. With doing NOTHING.
There were many first hand testimonies available , both children and adult , the Physicians who treat them and the researchers who keep pushing to find an answer when no one else will. Why are we being ignored ?
We are out there.
Waiting.
No , antibiotics are not a 'cure'. Not for 30 days - not for years. No one is really saying that- we are making progress in some treatments but there is no one answer.
One thing is certain - it HELPS, It makes some of us better . It puts some of us in 'remission' so we can get on with our lives. It saves some of our lives by at least stopping the disease from progressing out of control. Since no one else has any better alternatives at the moment and lives are being ruined - why not let Doctors try and help their patients have a better quality of life ? We know the risks and those of us who choose to try long-term antibiotic therapy should have that choice.
Teenagers are routinely put on some of the same antibiotics for ACNE- for years ! What about those 'risks ' ?? Lyme Disease can stop your heart ! What is more worthy of a risk - unsightly zits that you eventually outgrow or a potentially life-threatening illness ? Fuzzy logic abounds.
What is never discussed at these 'forums' is the fact that BIG PHARMA ( linked to more than several members of the IDSA board ) own PATENTS on Lyme Disease. They want to hold the rights and the profits for a vaccine someday. Their last attempt failed when it was shown to CAUSE Lyme Disease in its first takers. They pulled Lyme-Rix and cited " Poor Sales" as the reason. The likelihood of a vaccine that would protect anyone from the dozens of Lyme strains that exist ( and quickly mutate into several forms ) is not only unlikely but most likely impossible and it would be useless against the hundreds of possible co-infections that ride along with the Lyme bacteria. So why not let research and trial and error continue among those of us who do care to find a CURE ? Not interested ? Then the rest of the Medical establishment can go back to trading stocks in Pharmaceuticals and prescribing anti-depressants ( that don't work) to the millions of undiagnosed disease sufferers out there. Some of us want REAL answers .
Obviously , IDSA is not interested in the truth.
As Lyme Sufferers , we just want to be well again and prevent this hell from happening to others. We deserve the right to search out and procure the healthcare that HELPS us , not to be silenced in the face of such a debilitating and poorly addressed health issue. We will not let you get away with being silent , either. I urge everyone to write to Atty. General Blumenthal and let him know he needs to call the IDSA on their blatant disregard for public health and safety until they admit there is much more to learn before administering a 'Final Word' decree that could endanger thousands of lives.
IDSA Create's Black Thursday for Chronic Lyme Disease Sufferers ~
PLEASE click above to follow link to read article.
From CALDA :
Why we all need to contact AG Blumenthal now
The review process for the 2006 IDSA Lyme guidelines came about because of a Settlement Agreement with Connecticut Attorney General Richard Blumenthal. But the IDSA didn't follow all the procedures laid down in that agreement. If they had, one of the worst of the guidelines would have been thrown out. The recommendation in question requires that a patient have a positive Lyme lab test in order to be diagnosed with Lyme disease. Since Lyme lab tests are notoriously unreliable, this requirement denies appropriate diagnosis and treatment to untold thousands of patients with Lyme disease.
Lyme Disease should remain a clinical diagnosis . Like many other diseases , tests are used only as a tool for additional confirmation .
Contact AG Blumenthal and tell him you want him to make sure the IDSA follows all the rules. The lives of Lyme patients and their families are at stake.
If you can, please fax the AG. If no fax, email or call.
(860) 808-5387 Fax
(860) 808-5040 Phone
email: attorney.general@po.state.ct.us
Wednesday, April 14, 2010
Mepron Redux
Well , Spring is here and with it my latent Babesia has flowered.
I have been having so many symptoms again that it gets confusing but my recent blood work confirmed Babesia WA1 is still there. That would explain the skull-crushing migraines and killer joint pain i have been getting again.
This strain is supposedly a West coast strain but is now found all over the continental US.
It is a particularly stubborn bug and hard to eradicate. My previous 5 month stint with Mepron
( an antimalarial drug used for other blood parasites to varying degrees of success ) Zithromax
( which is supposed to increase Mepron's effectiveness )and quarts of Fevertree tonic and bitter lemon ( contains Quinine ) last summer seems to have reduced the overall load in my body but not enough to effect a cure. Considering how diligent i was , this is disappointing on a grand scale.
The goopy yellow stuff is tremendously expensive and i am not looking forward to a repeat.
I am going on a higher dose this time , adding Haritaki , an Ayurvedic herb that breaks down biofilm( the protective coating bacteria, viruses , parasites make to protect themselves from harm) and Artesunate at some point ( what W.H.O. has recently endorsed as the most effective Malaria cure ) And i wanted to wean myself off meds this summer . Ha.
The real issue is NO ONE knows how to cure these new strains of disease that are showing up and proliferating like mad. And they all seem resistant to the old guard of medicines that are being thrown at them. It really is all just a grand guignol experiment.
I really believe that there is a remedy or cure out there in Nature somewhere for every natural disease or pathogen. Except some of these things have been hatched in labs and genetically modified . Once escaped back into nature they radically alter themselves , mutating into Super-Bugs that don't respond to modern medicine. Or ancient medicine.
Lyme Disease has existed for Eons but newer strains are much more virulent and harder to eradicate. BORELLIA, MRSA , MARCONS, WEST NILE VIRUS, AVIAN & SWINE FLU all of these have been tinkered with or created in labs. Some from decades ago when our country (and others) had officially sanctioned Biological Defense Programs . These "experiments " , once out into the population mutate further , causing epidemics we are hardly prepared for .
We have created a monster.
Don't believe me ? Read Lab 257 by Michael Christopher Carroll . Meticulously researched and eye-opening. It gives you a lot to think about .
But i digress.
i am but an unwitting victim of fate and circumstance. I am just trying to understand it all.
I just want to be well .
So , on i fight. Bring on the Mepron ...
Tuesday, March 2, 2010
A Year later...
Well , that time has come. It is my one year 'anniversary' of REAL Lyme Disease treatment - the date i had my first appointment with my much cherished LLMD in Rockville Maryland took place in March of 2009 after a grueling six months of unexplained and frighteningly progressive illness. I wish i could report that i am 'all better' but i am afraid it is much more complicated than that.
I was diagnosed by my primary doctor , given the 30 day 'cure' of Doxycycline and remained sick - in fact worse. I have had a year of pulsed anti-biotic use with a 5 month break in between - a period of time where i started to feel almost 'normal ' again , albeit with some nagging , malingering reminders that all was not well - but exponentially better than i had been in a year's time. I was feeling pretty good , all things considered.
My doctor was not satisfied with letting sleeping dogs lie , however . He felt it was too risky to let my infections off the hook before we really used the full arsenal to lower the load on my body. Partial remission was a good sign but he wants to push through to effect a true remission - one with a stronger immune system and less microorganisms to multiply when no one is looking.
I reluctantly agreed , having come to enjoy about 70% of my health again. I wanted to just move on , be in a form of denial about the realities of this disease and put it all behind me . It has literally been a year and 1/2 of HELL. I wanted my body and my life back .
He convinced me that i wasn't ready , yet. My blood work still had some issues and i did admit , i still had symptoms that wouldn't go away no matter how diligent i was with my diet, herbs and infra-red. I was still carrying too much inside of me to go it alone .
I caved and filled the scripts for Rifampin and Azithromicin this time to target the sleeping dog of Bartonella , while reducing the Lyme load . Next is good ol' Mepron again. I took it faithfully for 4 months and the symptoms of Babesia all but disappeared. I thought i had beat at least THAT one. Unfortunately , i have the strain Duncani that doesn't respond to the typical Malaria drugs used to treat the most common strain of Babesia. I even argued with my doctor that i hadn't any more signs of it . That was about to change.
Sure enough , about a week into the Rifampin & Zith mix , all hell broke loose again. My bladder was the first to act up , then the night sweats came back , the nightmares, chest pains , costrocondritis ( rib pain ) , skull-crushing migraines unlike any other headache on earth .
I am having severe bone pain again that causes me to wake with a cry .
Bartonella and Babesia - still there after all this time . It is so debilitating , so depressing . I feel like i have been fighting this for years upon years , yet my doctor reminds me his basic treatment protocol is 18 months , minimum. I am only 12 months in , 5 months off anti-biotics . I have been on an herbal and homeopathic protocol to give my body a break form abx. Only ! a year of various treatments.
It still feels like a lifetime to me.
My LLMD is patient and kind. He quietly reminds me that Tuberculosis , Malaria and Syphilis
( similarly tenacious infections ) take a year or longer to 'push back' so one's immune system can rehab itself to take over for the medications. It is all about reducing the load. No known true 'cure' in sight. What most doctors will tell you is that you are cured when you are actually in remission. These things never truly go away- they behave more like viruses. They can be tamed but they are still wild on the inside .
Not what we want to hear , but the truth , nonetheless.
My body tells me the truth , too.
This new round of meds has awakened everything. I am in pain again and i am aware of how truly serious Lyme Disease can be. I wasn't one of the lucky ones who caught it immediately.
So i will not see my health return quickly , either. Simple equation , right?
It is incredibly scary how resilient these microorganisms are . But so am i. I can fight back and i will continue until i can reclaim the landscape of my body once more. To feel 70% ok , most of the time, is not really enough for me, not if i am honest with myself. When i suffer a relapse it is like starting at the beginning again. I need to be stronger to maintain my health the way i really want to. So we are on Round Two. It hasn't been easy.
I am still learning to be patient and continue to work with my body . I am painfully aware that i am not 'there' yet.
I am still fighting.
I was diagnosed by my primary doctor , given the 30 day 'cure' of Doxycycline and remained sick - in fact worse. I have had a year of pulsed anti-biotic use with a 5 month break in between - a period of time where i started to feel almost 'normal ' again , albeit with some nagging , malingering reminders that all was not well - but exponentially better than i had been in a year's time. I was feeling pretty good , all things considered.
My doctor was not satisfied with letting sleeping dogs lie , however . He felt it was too risky to let my infections off the hook before we really used the full arsenal to lower the load on my body. Partial remission was a good sign but he wants to push through to effect a true remission - one with a stronger immune system and less microorganisms to multiply when no one is looking.
I reluctantly agreed , having come to enjoy about 70% of my health again. I wanted to just move on , be in a form of denial about the realities of this disease and put it all behind me . It has literally been a year and 1/2 of HELL. I wanted my body and my life back .
He convinced me that i wasn't ready , yet. My blood work still had some issues and i did admit , i still had symptoms that wouldn't go away no matter how diligent i was with my diet, herbs and infra-red. I was still carrying too much inside of me to go it alone .
I caved and filled the scripts for Rifampin and Azithromicin this time to target the sleeping dog of Bartonella , while reducing the Lyme load . Next is good ol' Mepron again. I took it faithfully for 4 months and the symptoms of Babesia all but disappeared. I thought i had beat at least THAT one. Unfortunately , i have the strain Duncani that doesn't respond to the typical Malaria drugs used to treat the most common strain of Babesia. I even argued with my doctor that i hadn't any more signs of it . That was about to change.
Sure enough , about a week into the Rifampin & Zith mix , all hell broke loose again. My bladder was the first to act up , then the night sweats came back , the nightmares, chest pains , costrocondritis ( rib pain ) , skull-crushing migraines unlike any other headache on earth .
I am having severe bone pain again that causes me to wake with a cry .
Bartonella and Babesia - still there after all this time . It is so debilitating , so depressing . I feel like i have been fighting this for years upon years , yet my doctor reminds me his basic treatment protocol is 18 months , minimum. I am only 12 months in , 5 months off anti-biotics . I have been on an herbal and homeopathic protocol to give my body a break form abx. Only ! a year of various treatments.
It still feels like a lifetime to me.
My LLMD is patient and kind. He quietly reminds me that Tuberculosis , Malaria and Syphilis
( similarly tenacious infections ) take a year or longer to 'push back' so one's immune system can rehab itself to take over for the medications. It is all about reducing the load. No known true 'cure' in sight. What most doctors will tell you is that you are cured when you are actually in remission. These things never truly go away- they behave more like viruses. They can be tamed but they are still wild on the inside .
Not what we want to hear , but the truth , nonetheless.
My body tells me the truth , too.
This new round of meds has awakened everything. I am in pain again and i am aware of how truly serious Lyme Disease can be. I wasn't one of the lucky ones who caught it immediately.
So i will not see my health return quickly , either. Simple equation , right?
It is incredibly scary how resilient these microorganisms are . But so am i. I can fight back and i will continue until i can reclaim the landscape of my body once more. To feel 70% ok , most of the time, is not really enough for me, not if i am honest with myself. When i suffer a relapse it is like starting at the beginning again. I need to be stronger to maintain my health the way i really want to. So we are on Round Two. It hasn't been easy.
I am still learning to be patient and continue to work with my body . I am painfully aware that i am not 'there' yet.
I am still fighting.
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