A Non-Profit Organization
501c3
|
P.A.N.D.O.R.A. & The Lanford (LifeLyme) Foundation as partners advocating for Chronic Lyme Disease patients.
Excerpts from our October 2008 Newsletter announcing our partnership.
| |
|
| |
| |
| |
 Join me in welcoming the Lanford Foundation Lifelyme Inc., as a partner in our quest to establish the Florida Neuroendocrineimmune Institute!
Greetings!
The theme of this October newsletter is chronic Lyme disease (CLD), and I am pleased to announce and welcome the Lanford Foundation - LifeLyme Inc., as a collaborating partner in our "grass roots" efforts to establish:
One of the five neuroendocrineimmune institutes that must be established nationwide to address the pressing needs of the CFS/ME, FM, GWS, EI, and CLD patient community.
This important partnership is the result of a year long relationship that matured fast thanks to the involvement and dedication of several outstanding patient advocates: Sandi Lanford, Lisa Doyle-Torrey, Veny Musum, and John Coughlan. You will be learning more about these individuals in the months to come and in this newsletter.
From P.A.N.D.O.R.A.'s side, I am extremely grateful to Dr. Ken Friedman, a member of our executive board of directors and Chairman of our Public Policy Committee, who collaborated in this project. You can see his power point presentation at the Lanford Foundation 2008 January conference on chronic Lyme disease and related disorders by clicking here.
Since P.A.N.D.O.R.A. embraces chronic Lyme disease (CLD), this partnership is a good fit. We know it will generate great advocacy results.
In the next few months, we will be sharing plenty with you. The ongoing disbursement of P.A.N.D.O.R.A. community grants to deserving organizations to strengthen their well- deserving programs, the release of the Spanish translation of the New Jersey CFS Association Physician Manual; our new website coming up soon, the name for our newsletter contest chosen by our membership, other important partnership announcements, and much more.
I hope you will enjoy the articles our volunteer staff have prepared for you. I invite you to visit my blog and post a comment that I can take to the CFS Advisory Committee meeting on Oct 28-29. Sign up for the Empty Chair Project. Also, visit our website from time to time to see to see these wonderful changes.
Fall is finally here...time to enjoy the color of the season, except of course if you live in South Florida.
In Good Health and In Beauty,
Marly (Marla) C. Silverman
Publisher & P.A.N.D.O.R.A. Founder
|
|
WHAT IS CHRONIC LYME DISEASE?
Simply put, chronic Lyme disease (CLD) is a systemic infection transmitted by the bite of a tick infected with the bacterium Bordello orderer (Bb). This disease often causes intense fatigue, sleep disturbances, peripheral neuropathy, headache, joint pain, debilitating cognitive impairment, and respiratory infections. This disease definitely fits under our neuroendocrineimmune disorder umbrella, and P.A.N.D.O.R.A. believes it fits within our mission of eradicating neuroendocrineimmune disorders. CLD needs to be part of our efforts.
The Lanford Foundation - Lifelyme Inc., established in Tallahassee, Florida, is an organization founded by its current president Sandi Lanford, one of our 2007 Advocates Extraordinaire.
For over a decade, Sandi was misdiagnosed with CFS/ME when in reality she was infected with Lyme disease that had unfortunately become chronic and displaying all of the symptoms commonly found in CFS/ME patients. It was only after a proper blood test was done that Sandi found out that she was infected with Lyme disease.
Here is a brief listing of basic information that The International Lyme and Associated Disease Society (IADLS), a professional medical and research organization, provides in their websites on Lyme disease:
- Lyme disease is an infection caused by a tick bite that can result in infection of multiple organs and produce a wide range of symptoms. Fewer than 50% of patients recall a tick bite. Fewer than 50% recall any early rash, a classic "bull's eye" rash.
- Screening can be unreliable. The most common ELISE screening test misses 35% of culture-proven chronic Lyme disease.
- There are over 100 strains of Lyme in the United States and 300 strains world-wide.
- There has never been a study demonstrating that 30 days of antibiotic treatments cures chronic Lyme disease. However, there is much documentation that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Most cases of chronic Lyme require an extended course of antibiotic therapy to achieve relief of symptoms. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.
- Many patients require treatment for 1 to 4 years or until the patient is symptom-free. Relapses occur and maintenance antibiotics may be required.
- Lyme has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurological conditions as well as CFS, FM, summarization disorder, and many difficult to diagnose multisystem illness.
More information on Chronic Lyme Disease and co-infections can be found at the web site of Lifelyme .
Email Sandi Lanford with any questions: LifeLyme@yahoo.com
|
 Additional Resources and Recent Events Related to Chronic Lyme Disease
"The September 24, 2008 Congressional Hearing for Chronic Lyme Disease is making an impact and it was a huge success," as reported by Veny Musum to P.A.N.D.O.R.A. recently.
Thanks to the National Capital Lyme Disease Association, with support from Turn The Corner Foundation, who helped to sponsor this event, hundreds of congressional staffers attended the event along near two hundred patients that attended the event in Capitol Hill.
The briefing included a clip from the full-length film UNDER OUR SKIN. Free DVDs of this award-winning movie were given to senators and congressional staff. Click here to see the video trailer. Sandi Lanford, President of the Lanford Foundation Life Lyme Inc.; Vice President Lisa Doyle Torrey; and John Coughlan, a patient advocate from Massachusetts, and Veny Musum here featured in our Q&A interview, all expressed the unanimous feedback that "This movie is catching everyone's attention. The movie can be the final catalyst for our national health agencies to act promptly and prevent further suffering by CLD patients." If you are a CFS/ME or FM patient, make sure your treating physician has ruled out Lyme or chronic Lyme disease by using the updated blood tests now available. Click here to visit the web site of Lifelyme.
|
A Personal Story of Chronic Lyme Disease: Interview With Creath Fleskes
by Yvette Taylor
I work with a wonderful young woman whom I have never met. Hilary Branscum is the production manager at the press where the journal I edit is published. I always say that I am not going to be friends with all the people I work with professionally, but it's rare that I manage to do that, and I definitely couldn't do it with her! Hilary knows about my fibro, and she recently told me that her mother has chronic Lyme disease. At that point I knew very little about this disease. Hilary told me her Mom has symptoms very similar to mine. She was certainly correct. As you have read in this newsletter, PANDORA has now embraced chronic Lyme disease under our neuroendocrineimmune disorders umbrella. I hope you have read the articles on Lyme in this issue. If you have, you now know about this horrible disease. Marly interviewed Veny Musum, who is a patient advocate. What you will read now is my interview with Creath Fleskes, 57 years old, who lives in Topeka, KS.
Q: How long have you had chronic Lyme?
A: I was diagnosed 5 years ago, but I had symptoms for years and years that were never diagnosed. I was going to an acupuncturist who became suspicious and thought I might have chronic Lyme. She conducted a frequency of Lyme test, and I had 7 positive results. She sent me to her husband, who is a family physician. He did blood work and hair analysis, which involved cutting hair close to the scalp and examining it. The results revealed a serious loss of vitamins and minerals, a symptom of Lyme.
Q: What are your symptoms?
A: In addition to Lyme, I have chronic fatigue, fibromyalgia, blurry vision, cognitive problems, constant flu-like symptoms, and sleep problems. I also have chronic sinus infections and congestion. Lyme attacks your weakest points, and I have always had sinus problems.
Q: What meds do you take? Do they help?
A: At this point, I prefer the alternative medical approach. One of the leading Lyme experts in the country, Dr. Jernigan, has helped me a lot. His company, Ntraceuticals, Inc., provides me with borrelogen. Your readers may be interested in visiting his website www.jnutra.com. I take various herbs depending on my symptoms. Acupuncture has helped me a lot. At this point, I don't take any traditional medicines. I believe very strongly in mind over matter. I think we have to learn to deal with our daily problems and live as normally as possible.
Q: Do you have any advice for others who have just been diagnosed?
A: Don't think you are going crazy. You are not a hypochondriac. This disease is real, with many, many debilitating symptoms.
Q: Is there anything else you would like us to know?
A: Chronic Lyme masks other symptoms, so you really have to know your body. I also would like to tell you that had a very bad reaction to a flu shot a few years ago and will never get another one.
An insert from Marly Silverman: "If you have CFS/ME please discuss this issue with your specialist and with your family physician as well. CFS/ME specialist may differ a bit on how to approach the personal decision of whether a CFS/ME patient should take the flu shot. I personally do take the shot every year because the year I did not take it, I came down with the "flu," triggering a severe CFS relapse of great proportion. This happened before medications for "influenza" were available. My doctors now recommend that I take the flu shots, which I do every year. I do experience reactions to the shot, but they are much more manageable, lasting anywhere from 3 to 6 weeks; but it is much better than to have at least 6 months of feeling miserable and weak.
But because I believe that knowledge is power, please Click here to read Dr. Charles Lapp's medical advice from the Hunter-Hopkins Center in Charlotte, North Carolina. He does not seem to favor the flu shots for his CFS/ME patients unless they have other chronic high-risk conditions. And, as always, please consult your physician and empower yourself with knowledge so you can make an educated decision."
|
|
 MEET VENY MUSUM
A "Q&A" session with an outstanding patient advocate for chronic Lyme disease (CLD)
"EVERYONE, no matter their financial situation or how sick they are, needs to do WHATEVER THEY CAN to organize and fight back to overcome CLD in diagnosis, treatment,and insurance coverage. We must unite... gain victory over the fastest spreading, most devastating disease in the world. Take ACTION to help yourself! Take ACTION to help us all." --Veny Musum
There has been much controversy and different medical views on how to treat Lyme disease and about the use
of antibiotics. Some professionals believe that a short round of antibiotics can do the trick. But what is a
medical professional to do when Lyme disease becomes chronic? Are they aware of the signs?
Veny Musum, Senior Vice-President of Paul Mitchell Systems, knows first hand that, unfortunately, the
average family physician is not aware of the dangers of Lyme disease developing into chronic Lyme disease. In this "Q&A" session Veny shared with PANDORA his patient story.
Q: How is your health now?
A: My wife and I are still struggling, but are much better from the disastrous state we were in. There is NO DOUBT that long-term antibiotic therapy was essential. This directly contradicts the, now completely discredited, Infectious Diseases Society of America (IDSA) and their bogus guidelines that have hurt so
many.
Q: Has your health improved?
A: Over the last 8 years, I have been to 4 LLMDs [Lyme-literate medical doctors] and have gained both strength and health by working with each one over time. I believe no one doctor, not even the LLMDs have all the answers. If a non-LLMD trained doctor tells you they know "all about Lyme" RUN OUT OF THE OFFICE! The better
the doctor, the more they will tell you there is a lot more
to learn about this most challenging, complex disease.
Q: You have a very successful business career, highlighted by strong personal and financial accomplishments. What did you do in order to be able to work (full time or otherwise)?
A: It took fighting every day, sometimes--frankly--like an animal, to get to this point. I fought back hard after
being misdiagnosed by 16 doctors to get even the beginning of a proper diagnosis (initially misdiagnosed
as negative for Lyme with the ELISA blood test that 99% of untrained doctors rely on when testing for Lyme and its co-infections and is currently a FIASCO!), treatment (much more to learn about what is most efficient and effective) and insurance coverage (an unmitigated outrage). I have, therefore, become active in the CLD movement because I have seen so many other organizations not equipped with either the determination or expertise that I personally have to help overcome the horrific morass that is Lyme disease. CLD can destroy everything you have and then kill you.
Q: Did you get special accommodations at work?
A: I travel as little as possible these days. Flying really knocks me out.
Q: How do you see your future health and that of your wife and family?
A: I am presently doing The Marshall Protocol under the guidance of Dr. Leslie Fein in W. Caldwell, NJ. I am about 65-70% better than I was. However, I will not rest until I am 100% cured of the plague that is Lyme disease.
Q: What are your challenges? Name the most important ones and why?
A: Stamina. Fatigue, sometimes severe, especially early morning and evenings. Continuing challenges with eyes, throat, spine, joints, sinuses, ligaments, digestive track, mood, lungs, immune system, I could go on...
Q: Could you please give us an "advocacy quote" to motivate others?
A: EVERYONE-no matter their financial situation or how sick they are-needs to do WHATEVER THEY CAN to organize and fight back to overcome CLD diagnosis, treatment, and insurance coverage. We must unite to win a victory over the fastest spreading, most devastating disease in the world. Take ACTION to help yourself! Take ACTION to help us all!
Q: What else would you suggest we could as a patient-driven organization to improve the possibility and feasibility of the establishment of the Florida Neuroendocrineimmune Institute?
A: I believe a Center of Excellence is critical to our overall goals. I also believe that we should also be aggressively looking at New Jersey (The World's Medicine Cabinet) as an initial or additional location for such a vital center. I hope the UMDNJ is a primary target for such a center. Its unique location in the heart of the NY/NJ media and business capital of the world and would give the initial center the major key leverage needed so other centers could be replicated across the U.S. and around the world.
Q: Is there anything else you would like to say with regard to CLD?
Print the attorney general of CT's earth-shattering press release and share it with P.A.N.D.O.R.A.'s members.
Post script: Click here to read Connecticut Attorney General Richard Blumenthal, press release regarding his office anti-trust investigation of the Infections Diseases Society of America (IDSA), uncovering the behavior of the IDSA, which Veny calls "the greatest medical outrage and cover-up of our time." |
|
|
|
|
