Letter to Senators Blumenthal and Gipson

Here is a letter from Carl Tuttle who is a Lyme activist based in New Hampshire. He sent this to two politicians who are very supportive of the chronic Lyme community. As you may recall, Richard Blumenthal was the Atty. Gen. of the state of Connecticut whose antitrust investigation uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA agreed to reassess them with the assistance of an outside arbiter. 

Unfortunately, the results were less than spectacular with the IDSA group not exactly following instructions laid down by Blumenthal et al. If you're interested in reading a little bit about that, here is the link:
http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

Blumenthal subsequently ran for US Senate and won. He is now in Washington DC where we hope he'll have even more influence as a US Senator. Terry Gipson is a New York State senator (D)  representing the 41st senate district of New York. Here's his web page:

http://www.nysenate.gov/senator/terry-gipson

May 13, 2014

Dear Senators Gipson and Blumenthal,

I would like to call attention to the following Health and Human Services Webinar regarding the state of research on the persistence of Borrelia burgdorferi (Lyme disease spirochete) scheduled for May 22nd at 1:00PM.

http://www.cdc.gov/lyme/resources/May2014_HHS_Lyme_Disease_webinar_mazarin_508.pdf

The anticipated CDC conclusion to this webinar will most likely claim that the Embers study involved primates so results don't prove persistent infection in humans and the Marques xenodiagnosis study recovered Lyme from a single Post Treatment Lyme Disease Syndrome patient so more studies are needed before reaching a conclusion.

Pathologist Dr Alan MacDonald has compiled a list of 123 autopsy cases of Lyme borreliosis. The autopsy proves as no other evidence can that chronic Lyme Borreliosis in the human host is a reality, causing enormous disabilities, patient suffering, and life altering changes.

Chronic Lyme Borreliosis in the Human host: Autopsy Evidence from 123 peer reviewed published Autopsies:

Http://vimeo.com/93726874

In addition to Dr MacDonald's evidence of chronic Lyme disease from peer reviewed studies here are some additional studies to consider:

Persistent Lyme infection: 273 Peer-Reviewed Studies
http://home.comcast.net/~runagain/Persistence%20of%20Lyme%20Disease.doc

Congenital Transmission of Lyme: 28 Peer-Reviewed Studies
http://home.comcast.net/~runagain/Congenital%20Transmission%20of%20Lyme.doc

Seronegativity in Lyme borreliosis: 103 Peer-Reviewed Studies
http://www.lymeinfo.net/medical/LDSeronegativity.pdf

We see the Health and Human Services Webinar as a continuation of the CDC's denial of chronic Lyme so as not to hinder an ongoing vaccine agenda. Chronic relapsing Lyme disease does not fit the vaccine model as efforts to maintain the restrictive definition and one size fits all treatment guideline have been ongoing for three decades.

Until those responsible for the mishandling of Lyme disease are removed from their positions of influence your constituents will continue to encounter denial of treatment, insurance reimbursement, disability and death.

It is time to stop turning a blind eye to the blatantly obvious misinformation campaign orchestrated by the CDC, IDSA and ALDF as 20,658 petitioners across America (and the globe) are calling for a congressional investigation of the deliberate mishandling of Lyme disease.

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF
https://www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

We are witnessing one of the most shameful episodes in the history of medicine as those responsible for the disinformation operate as if they have immunity from examination because of the office they hold. It is time to recognize chronic Lyme Borreliosis and focus on understanding the disease process while creating effective treatment for persistent infection.

Respectfully Submitted,

Carl Tuttle
Hudson, NH 03051

Please continue to forward this petition to educate others
Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF
https://www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf

New concept in insect repellent

Here's a new take on how to repel insects. A new product in the making, possibly useful against ticks.

http://www.cnn.com/2014/05/05/tech/innovation/big-idea-bug-spray/index.html?hpt=hp_bn5

Babesia venatorum Infection in Child, China , 2014

Detailed case study of an 8-year old boy in China who contracted babesia, how it was detected and what was used to clear it. 

Azithromycin and Mepron seem to have done the trick.

http://wwwnc.cdc.gov/eid/article/20/5/12-1034_article.htm

Tech Support...

Medicare assistance

I learned the hard way that some Medicare assistance can save a Lyme patient thousands of dollars. Read and benefit from my error, please.

Unbeknownst to me, I had Medicare from the first day I qualified for SSDI (Social Security Disability Insurance). Not realizing this factoid, I continued to pay my PPO (Blue Shield) premiums for another year (well, 14 months, actually). At $1,500 a month, that ran me approximately $21,000. I am fighting for reimbursement now. 

What led to this error is that I had heard somewhere that typically Medicare doesn't kick in until two years after SSDI begins. However, in my case, my attorney and I had claimed I became disabled way back in 2002, when I was diagnosed with Lyme. The SS folk didn't agree, because Lyme doesn't qualify as a disability (go figure). Instead, they did honor my diagnosis of Parkinson's disease, which was made in 2007. The two-year rule still applies. It just begins at the roll-back date of 2007 instead of the actual day of the first check.  Since I actually started getting SSDI checks in Nov of 2012, that means I qualified for Medicare in 2009 (two years after SSDI) and therefore I didn't need to keep Paying my Blue Shield premiums. I could have stopped those on the day I qualified for SSDI. If I had received a Medicare card in the mail, that might have clued me in. But I didn't. 

Anyway, the moral of the story is to consult someone who understands Medicare and SSDI if in doubt about how it works. It could save you a lot of hassle (and money). Below is an article from a health newsletter I subscribe to, from Consumer Reports. It lists some Medicare advice sources. 

-Bob

Q. I am eligible for Medicare next year and am wondering if there are any resources that I can go to or use to help me know when to start the process, what my options are, deadlines for getting onto Medicare, deadlines for getting the supplemental insurance, and what to look for in supplemental insurance.—Johanna Columbro, Dayton, OH

A. Yes, lots! Your first resource should be Medicare's consumer portal, Medicare.gov, where you can get the answers to those questions and much more. Here at Consumer Reports we've also created a Medicare information center at ConsumerReports.org/cro/medicare. And for more complicated questions we recommendmedicareinteractive.org, a project of the nonprofit Medicare Rights Center.

Check our health insurance guide for more advice and tips, health news, insurance rankings, and more.

Send your questions to ConsumerReports.org/askourexperts.

3 Incredible Ways Technology Can Help Treat Parkinson’s Disease

Among other tools discussed in this article, the iPhone with this motion sensors and sound sensors is being promoted with appropriate apps to help detect Parkinson's and help people improve certain aspects of Parkinson's, such as slurring of words. An interesting little piece of high tech reporting.

http://www.fool.com/investing/general/2014/05/04/3-incredible-ways-technology-can-treat-parkinsons.aspx#.U2aCs0dsJXI.twitter

Hyperbaric oxygen treatment (HBO) for chronic Lyme disease in Taiwan

Here is a study about hyperbaric oxygen therapy for chronic Lyme disease. It's rare to find any articles on that particular application of hyperbaric oxygen. Mostly, HBOT is used for  treating diabetic wounds that will not heal, re-pressurizing and then slowly de-pressurizing scuba divers who came up to the surface too quickly, and burn victims. 

J Chin Med Assoc. 2014 Apr 9. pii: S1726-4901(14)00042-2. doi: 10.1016/j.jcma.2014.02.001. [Epub ahead of print]

Hyperbaric oxygen therapy as an effective adjunctive treatment forchronic Lyme disease.

Huang CY¹, Chen YW², Kao TH³, Kao HK², Lee YC⁴, Cheng JC⁵, Wang JH⁶.

Author information

Abstract

Lyme disease is the most commonly reported vector-borne illness in the United States, but it is relatively rare in Taiwan.Lyme disease can be treated with antibiotic agents, but ∼20% of these patients experience persistent or intermittent subjective symptoms, so-called chronic Lyme disease (CLD). 

The mechanisms of CLD remain unclear and the symptoms related to CLD are difficult to manage. Hyperbaric oxygen therapy (HBOT) was applied in CLD therapy in the 1990s. However, reported information regarding the effectiveness of HBOT for CLD is still limited. Here, we present a patient with CLD who was successfully treated with HBOT.

Copyright © 2014. Published by Elsevier B.V.

KEYWORDS:

chronic Lyme disease, hyperbaric oxygen therapy

PMID:

 

24726678

 

 [PubMed - as supplied by publisher]

Two Lyme disease legislative victories !!

Ld legislative victories !!

http://www.burlingtonfreepress.com/

Supporters celebrate final vote on Lyme bill

Free Press Staff7:38 p.m. EDT May 1, 2014

MONTPELIER – It took months — years, actually — but advocates for giving doctors and patients with Lyme disease more options smiled Thursday afternoon as the Senate gave their bill the last stamp of approval needed before sending it to the governor to become law.

"Success at last," said Betsy Eklof of Colchester, who has traveled to Montpelier to watch nearly every step of the legislation this winter. "We are hoping now to bring Lyme health care back to Vermont."

The bill provides legal protection and encouragement to the medical profession in treating Lyme disease. The measure responds to the lack of doctors willing to treat long-term Lyme disease patients because of the controversy over prescribing extended courses of antibiotics.

The bill doesn't tell doctors how to treat the disease, but says that the Vermont State Board of Medical Practice will issue a policy that assures health providers that regulators won't pursue disciplinary action against them solely for providing care that meets recognized guidelines.

The list of recognized guidelines includes ones the Lyme support group favors.

"We are hoping doctors will come out of the woodwork," Eklof said.

18 quotations about truth

1. All the durable truths that have come into the world within historic times have been opposed as bitterly as if they were so many waves of smallpox —H. L. Mencken
2. As with the pursuit of happiness, the pursuit of truth is itself gratifying whereas the consummation often turns out to be elusive —Richard Hofstadted
3. Pure truth, like pure gold, has been found unfit for circulation, because men have discovered that it is far more convenient to adulterate the truth than to refine themselves —Charles Caleb Colton
4. Random truths are all I find stuck like burrs about my mind —Phyllis McGinley
5. Rich honesty dwells like a miser … in a poor house; as your pearl in your foul oyster —William Shakespeare
6. Truth … drag it out and beat it like a carpet —Hortense Calisher
7. Truth is a cow which will yield such people no more milk, and so they are gone to milk the bull —Samuel Johnson
8. Truth is as difficult to lay hold on as air —Walter Savage Landor
9. Truth … is not a thing to be thrown about loosely, like small change; it is something to be cherished and hoarded and disbursed only when absolutely necessary —H. L. Mencken
10. The truth is tough. It will not break, like a bubble, at a touch … you may kick it about all day, like a football, and it will be round and full at evening —Oliver Wendell Holmes, Sr.
11. The truth kept wandering in and out of her mind like a lost child, never pausing long enough to be identified —Margaret Millar
12. Truth, like a bird, is ever poised for flight at man's approach —Jean Brown
13. Truth, like a suit of armor, stubbornly resists all attempts to penetrate it —Robert Traver

    In his novel, People Versus Kirk, Traver continues the simile with "… while the lie, under probing, almost invariably reveals some chinks and cracks."

14. Truth is like a torch, the more it is shook, the more it shines —Sir William Hamilton

    Modernized from "The more 'tis shook, it shines."

15. Truth, like gold, is not less so for being newly brought out of the mine —John Locke
16. Truth, like light, blinds —Albert Camus

    Camus prefaces his simile from The Fall as follows: "Sometimes it is easier to see clearly into the liar than into the man who tells the truth."

17. Truth, like the juice of the poppy, in small quantities, calms men; in larger, heats and irritates them, and is attended by fatal consequences in its excess —Walter Savage Lando
18. A truth's prosperity is like a jest's; it lies in the ear of him that hears it —Samuel Butler

Similes Dictionary, 1st Edition. © 1988 The Gale Group, Inc

Lyme disease in Hangzhou, China

Investigation on the Seroepidemiology of

Lyme

Disease in Hangzhou

CUI Wei-wu,DENG Jing,SHI Shi-feng,et al.Hangzhou Center for Disease
Control
and
Prevention,Zhejiang 310006,China  

Objective: 

 To investigate the Lyme Borreliosis infection status of population and epidemiological
characteristic in Hangzhou city so as to put forward the preventive measures.

Methods Seroepidemiologic investigations were carried out in mountain residents and forestry workers from Yuhang district,Lin'an city and Jiande city.All serum samples were detected by indirect immunofluorescent assay test(IFAT) for antibodies(IgG)against Borrelia bugdorferi.Positive samples were,detected furthermore to distinguish syphilis and leptospirosis.

Results 

Total 932 persons were investigated,111 persons were determined to be infected with Borrelia burgdorferi and the rate of infection was 11.91%.Infection rate of male was a little higher than that of female,but there was no significant difference(P0.05).Infection rates showed no significant difference among age groups(P0.05).There were significant differences of infection rates among the areas in Hangzhou(P0.05),with the highest rate in Yuhang district and the lowest rate in Jiande city.The infection rate in mountain residents was a little higher than that of forestry workers,but the difference wasn't significant(P0.05).

Conclusion 

The infection rates of lyme borreliosis were high in mountain residents and forestry workers in Hangzhou.Human,no matter age,sex and occupation,is generally liable to be infected by Borrelia burgdorferi,as long as he is bitten by the tick.It suggests that prevention and control of lyme disease in the people from forestland and mountains in Hangzhou is necessary.

【Key Words】： Lyme disease Serological epidemiology Indirect immunofluorescent assay test
【CateGory Index】： R181.3;R514