Okay - I'll confess - I am not much of an activist but my husband's illness has made me an unwilling willing activist.
So many here are both CPNi and Lyme co-infected that I will throw this out there
On September 24th, Senator's Dodd and Lieberman are sponsoring a luncheon briefing in the Senate Russell building. All members of congress are invited.
This is a briefing in which attendees will learn about lyme and co-infectionsi and it's effects on Americans. There are two bills before congress S. 1708 and a tandem version in the house that allocate resources for studies, education, improved testing, etc...
Please email your US Senator's and Congressman and ask them or a member of their senior staff to attend this informational luncheon briefing.
From what I understand it is planned to be VERY compelling to attendees to take action for those suffering from infection induced MSi, CFSi/ME, Fibro, etc...
If you don't know who they are your senators and congressman are you can find them by zipcode at www.congress.org. They all have easy links on their websites to plug in a quick email.
Even if you only have CPN and not lyme and CPN there is still probably upside for the US gov't to begin to take L-form pathogens as a more serious public health threat.
Pass it on !
Thanks for your consideration!
Here's an example of one I sent today
Dear Senator Chambliss,
On September 24th in the Senate Russell Office building, Senator's Dodd and Lieberman are hosting a luncheon briefing on S. 1708 the lyme bill.
Georgia is a state that has been declared endemic for lyme disease.
The CDC says cases are dramatically underdiagnosed and undertreated leading to untold suffering for many Georgians and Americans.
I encourage you or a member of your senior staff to attend this briefing to learn more about the issues surrounding this complex and emerging health issue.
Regards,
Real Name
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Daisy - Husband on CAPii 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Hey - I'll throw this out
Hey - I'll throw this out there too - one email does count.
There are rules of thumbs that congressman and senators use that tie one letter, email, phone call etc... to between 1,000 and 35,000 constituents opinions - depending on issue and state size. Least these are the numbers my company has show us in the past when asking us to write letters on issues.
So while you may or may not wonder if your vote in US elections really counts, in terms of sending contact to your congressman and senators - it absolute counts - alot!
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Daisy, I sent one out
Daisy, I sent one out tonight!!
Raven
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Feeling 95% well-going for 100. Still testing + for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.for MSi and/or CFSi. Also EBVi and HHV6. Amoxy,Doxyi, Azith, Tinii pulses. NACi, Iodoral,
T3, BHRT, MethyB12 injections,Nitro patch,Thanks, Daisy, for making
Thanks, Daisy, for making this so easy.
I sent out messages to my senators and congressman this morning (in endemic RI).
It really took less than 5 minutes. Thanks again!
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Positive Cpni and Bb dxi'd November 2006. Previously dx'd RRMSi May 2000. Treated by Lyme MD as of 11/06. Current regimen is tetracycline, Difllucan and Mepron.
Daisy,I did this
Daisy,
I did this yesterday, in Minnesota. Thanks for the heads-up!
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Wheldon Protocol for rrmsi since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.
Done!! I sent this to 2
Done!! I sent this to 2 senators and a representative of Florida. Just had to modify the state. Thanks for setting this up, Daisy.
Lori
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Yes ma'am. Here's my
Yes ma'am. Here's my Texas-fied long version of your letter:
Dear Senator Hutchison,
On September 24th in the Senate Russell Office building, Senator's Dodd and Lieberman are hosting a luncheon briefing on S. 1708, the lyme bill. Lyme Disease IS in Texas...just ask the professors educating future vets at Texas A & M. They and practicing Texas veterinarians seem to be far "ahead of the curve" compared to the medical crowd treating humans. That's a huge problem for Texas human beings who have Lyme Disease.
Texas is practically empty of Lyme-Literate-Medical-Doctors (LLMD's). And sadly, of those who are knowledgeable about Lyme, most are afraid to treat the disease in a truly effective way, because of political controversy and contradictions between two major medical associations. An important result of the Lyme "mess" is that one group's published guidelines are being used by insurance companies to deny coverage for treatment that is desperately needed for those who have chronic Lyme infectionsi.
This mess will continue until more research is performed by unbiased parties and better, more affordable tests are invented. This will only happen if the needed research is funded by government, not by the large pharmaceutical companies, not by the large private laboratories.
You will learn more about the controversy as the vote on the Lyme bill approaches, but I'll tell you now from experience, the IDSA is wrong, and ILADS is right. How do I know? I have a husband who was diagnosed with multiple sclerosis, but it turns out he has chronic Lyme Disease, chronic Chlamydia pneumoniae, chronic Mycoplasma pneumonia, and various chronic viral infections. Once someone is beset by a chronic infection, he/she is more vulnerable to become chronically infected with other pathogens. Multiple chronic infections appears to be the rule instead of the exception with Lyme patients.
If my husband had been tested with an accurate test at the time just preceding his MSi diagnosis, he could have been saved from a year of injecting an MS interferon medication that only made his condition worse. If the immunei system is suppressed by interferons, chronic infections have "free rein" to grow and spread.
Now that we have learned my husband has Lyme Disease, we are compelled to travel to a northeastern state for him to receive serious, meaningful treatment. Doctors in Texas are fearful of treating with long term antibioticsi due to the threat of being disciplined by the medical board.
This is a horrendous state of affairs. If the disease were TB or Syphilis, there would be no controversy or threat. The danger of Lyme Disease is not widely known and under-appreciated. Lyme disables, Lyme causes dementiai, Lyme causes pain, Lyme kills.
The course of the disease and the symptoms are very much like Syphilis. Both Syphilis and Lyme are caused by spirochetes, and the development of the one is very similar to the other. Incidentally, most LLMD's believe that Lyme Disease crosses the placenta, causing fetal death in some cases or major illnesses in children (including Autism).
The CDC says cases are dramatically underdiagnosed and undertreated leading to untold suffering for many Americans (Texans included). I encourage you or a member of your senior staff to attend this briefing to learn more about the issues surrounding this complex and emerging health issue.
Regards,
Joyce _________
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Done Daisy, Logging in for
Done Daisy, Logging in for the Great State of Maine! My District U.S. Congressman and our States two current U.S. Sentors have been duly advised. I embelished the form you provided ever so slightly, short is good. Locally here folks are being denied abxi coverage for certain abxs (azithro limited to 6 doses per month) by Anthem the largest provider in this state. Roxi self pay covers more doses (almost 7 weeks) than self pay for 6 tablets.
Claritho is a bit better and I will go to it sometime soon (it is waiting in my cupboard).
Please keep us posted here on future new that we might like to be aware of please.
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6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
Done here, also - both
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
Well, somehow I doubt
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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Hey - I got a call from one
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill