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

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 ...