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.
- 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 .
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: |
 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.
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| 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.
PS from Yvette: Interestingly, I just came back from my rheumatologist, Dr. P. Saxe. I asked him about the flu vaccine, and he said people with fibro should definitely take it. I have done so for many years. I have had the flu twice, before I was diagnosed with fibro. I shudder to imagine what it would be like to have the flu AND fibro. There is a lot of controversy about this vaccination for people in our community. Talk to your doctor about any concerns. I did and am getting the flu vaccine next week.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.”
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 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.“ |
 PANDORA GRANTS RELEASED
“A special thanks to PANDORA for helping me get to the International Conference on HHV-6 and the Symposium on Viruses in CFS in June 2008 in Baltimore, MD.”–Cort Johnson
Cort Johnson received a media scholarship from P.A.N.D.O.R.A. under the Advocates Extraordinaire 2008 program to attend the HHV-6 Foundation symposium on June 21 in Baltimore on a special assignment representing P.A.N.D.O.R.A. and PHOENIX Rising newsletter. The intent of of the grant was to get a report written by a patient for other patients.
Click here to read Cort Johnson’s Part I Report from the HHV-6 Foundation SymposiumNote from the publisher: “This is fascinating reading. Cort presents his report, in most parts, in a format that most CFS/ME patients can understand. But do not attempt to read the entire material at once, nor read it during a relapse or on a “bad day. His well-written reports bring hope to our patient community!”
Click here to read Cort Johnson’s Part II Report from the HHV-6 Symposium |
 Dr. Roland Staud Presented His FM Research at the Annual European Congress of Rheumatology in Paris
By Sabrina Kahn
Dr. Staud, who was a key speaker at PANDORA’s 2006 Inspiring Hope Through Awareness Conference in South Florida, presented his research on Patient Centered Outcomes in Fibromyalgia (FM) at the European League Against Rheumatism (EULAR) congress in June in Paris.
International rheumatologists were very interested to hear that his research showed that FM patients want 60% pain reduction before they consider treatments to be successful.
At this meeting there was also discussion about promising new therapies for FM. Milnacipram, a drug that interferes with pain-signaling, showed very promising results in U.S. and European trials of FM patients. It will likely be approved for the treatment of FM by the FDA by the end of this year. The side-effects from this medication have been reported to be mild and mostly related to stomach upsets.
To learn more about this or any of our current FM studies (including treatment studies), please contact Sabrina or Natalia at 352-265-8901 or by e-mail.
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PEOPLE WHO MATTER
- The shortage of CFS researchers and treating physicians is REAL!
- By providing pertinent minutes of the past 8 years of the CFS Advisory Committee (and from the previous committee), we demonstrated the real need for specialized research and physicians in this medical field.
- The documentation provided contained expert patient and caregiver testimony attesting that since the latest major outbreak of CFS in Incline Village, Nevada, for more than 20 years patients cannot find physicians to treat them.
- There is only a handful of CFS specialists in the entire nation.
- The current list of CFS and other neuroendocrineimmune disorders researchers and treating physicians shows that these individuals are getting older, some have already died, and others are retired or are getting ready to retire.
Dr. Garcia’s past and current medical training in the field of CFS qualifies her for remaining in the U.S. with a visa under the category of “national interest” benefiting our nation and its medically underserved citizens.Click here
to ask Dr. Garcia a question either in English or Spanish.
 Susan Clifton, one of our founding board members is also a very talented artist. She designed and donated our original (soon to be changed) website. Her artwork was recently featured in Deerfield Percy White Branch Library in Broward County, Florida. Take a moment to see her website and enjoy her nature and abstract art works.
 Our own staff writer, Marla Schwartz, is a celebrity! One of her short plays is being performed in Wellington at the Third Annual Festival of Short Plays. The Studio Theatre of Wellington will present these plays on:October 24, 25, 31, and November 1 at 8 pm The Studio is located at 11320 Fortune Circle in Wellington. Reservations are needed due to limited seating. Call (561) 204-4100. Tickets are $15.
And there’s more! Schwartz’s play “America’s Working?” will be performed at Lynn University in Boca Raton, November 19 to 22 at 8 pm. The November 22 performance is a matinee at 2 pm.
After the Boca presentation, the play will move on to New York! Congratulations, Marla!
In addition, our current grant program for medical students to learn about CFS/ME and other neuroendocrineimmune disorders is in full motion. ( Several press releases will be disseminated giving you a more details). We will continue to pursue our mission to encourage, increase, and provide for American physicians who are willing, able, and have a sincere and genuine desire to treat CFS/ME, FM, GWS, EI, and CLD (i.e., patients suffering with neuroendocrineimmune disorders). By running both efforts concurrently, we will ensure that our patient community will at least stand a chance at getting services for their current and future medical needs.
Please support these efforts by making a small donation today or visit our
Dr. Lina Garcia
, a P.A.N.D.O.R.A. Director and International Advocate Extraordinaire, represented P.A.N.D.O.R.A. at the HHV-6 Foundation symposium on June 21 in Baltimore. A report in English and in Spanish will be disseminated soon.
We are also proud to report that due to our mentoring program of young physicians and researchers, Dr. Garcia, who is from Colombia, South America, has been approved for a visa to work in the U.S. as CFS-Neuroendocrineimmune Disorders researcher and physician.
PANDORA sent a letter to immigration detailing and documenting the following: |
Americans With Disabilities Act
Congress recently passed the Americans With Disabilities Act (ADA) Amendments of 2008, and President Bush has stated that he will sign it. This is a very exciting development for our community. Congress overturned two Supreme Court cases that significantly narrowed the scope of the ADA, noting that bodily functions, such as bowel, bladder, digestion, immune system, cell growth, brain and circulatory functions, among others, can be just as disabling as the inability to see, hear, or walk.
Most important for our community: Congress stated: “An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” This is the first explicit recognition of the disabling effects of chronic illness. We have — finally — been heard!
We will learn more about the reach of these broader provisions as they are interpreted by federal agencies and the courts. But there can be no question that this is a very significant victory for persons who have chronic illnesses.
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Recognizing and Assisting Students With CFS
by Dr. Kenneth Friedman and Rosemary Underhill
Dr. Friedman and his colleague have written an important paper about students with CFS/ME. This debilitating syndrome does not affect only adults. Many young people suffer from it as well. In their article, the authors have targeted teachers of students affected by this life-altering disorder. They noted that:
“Many times, it is the classroom teacher who first realizes that a student’s behavioral changes indicate a serious problem. One illness, chronic fatigue syndrome (CFS), may appear to be a behavioral problem in the classroom but. in actuality, is a serious medical condition. If left unrecognized and untreated, CFS may result in lifelong disability.”
While comprehensively describing what CFS is, Friedman and Underhill report on its impact on affected students. They also provide teachers, school administrators, parents, and other interested readers with a myriad of practical ways to help this young population achieve their goals and receive the educational modifications to which they are entitled.
This paper was originally published in the NJEA Review (October 2007).
The complete paper can be found on Dr. Friedman’s webpage on the PANDORA website.
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 Making Plans (or Not) When You Have Fibro and/or Other Neuroendocrineimmune Disorders
by Yvette Taylor
Those of you who know me or have read my earlier articles may remember that my mantra is “living with fibro and trying to laugh.” This philosophy is not an easy one, and there have been many, many days when I’ve cried. For me, a flare-up is accompanied by the feeling that this is it; I’ll never, ever feel better. But I do and start all over again.
This day is a sad one for me because all my plans have changed. I woke up at 3 am choking and pulling off my CPAP mask. I have a cold, stomach upset, and, as would be expected, ache all over.
Tonight is Rosh Hashanah, the Jewish New Year. Once again, I have had to call my niece Joann to tell her I couldn’t come. Once again, I didn’t have a recipe for the dish I was to cook. I know all the ingredients and had already purchased them, but I have no measurements. Obviously, my Jewish specialties come out different every time; they are usually, but not always, good. It took me years to perfect my Mother’s soup, though it will still be a bit different every time–no recipe. Joann is catching on. She told me that the Yom Kippur break the fast is Thursday night. She hopes I’ll come, but she won’t plan on it, which means who will bring the noodle pudding? But that isn’t a crisis because I do have a recipe that I have modified somewhat and can provide to anyone who is willing to risk a heart attack. I always had Rosh Hashanah here, even after fibro hit. Two or three years ago, I had 15 people coming and had bought everything I needed, which was quite a lot. I had to call the whole thing off two days before the dinner because of a flare-up. So, I am not planning any gatherings again for which I’m the main cook, which is very upsetting to me. That’s one of the worst parts of fibro–the unpredictability of pain and fatigue and the life-altering changes that come along with it. How can we make plans?
If you are a woman with fibro and/or CFS/ME, have you ever taken a shower, put on make-up, gotten dressed, and then realized that you were too exhausted to go out? That has happened to me enough times to know that it’s a mistake, especially if I need to be out of the house before noon. Now, I take a shower and wash my hair the afternoon before a planned outing. The next day, all I have to do is put on make-up, which I do in about 5 minutes (obvious to those of you who know me). I also have to work on plastering down the sections of my hair that are sticking straight out. It’s even harder now that I have to contend with tubing around my head every night.
I also made plans to reduce my work load and finally did, after many years of thinking about it. I was managing editor for two journals published by the American Association on Intellectual and Developmental Disabilities. The only reason I could keep the job after being diagnosed with fibro is because I work at home. If my head begins falling into the computer screen, I can crawl to my bed. It was, however, far too much work. I toiled nights, weekends, whenever I could. So I finally dropped one of the journals, and it has made a change in my life and, unfortunately, my salary. It did enable me to do other things and significantly helped my stress level. We all know what stress does to us.
Now I could breathe a little easier, I thought. My volunteer work for PANDORA was not as hard for me to do because I didn’t have as many deadlines with only one journal. Be careful what you plan . . . Somehow, slowly but surely, step by step, Marly worked on her plan for me. It is the sign of a great leader to know how to delegate. Marly works far too much and comes up with amazing ideas. She finds projects that no one else does. Who would think of applying for a Google grant–and getting it! When she told me about her idea for a video contest, I said, “Who is going to make a video? It’s hard enough to get out of bed in the morning!” Once again, she was right. If you haven’t ever seen the entries, you simply must! We had fantastic video entries, and choosing winners from a myriad of possibilities was not an easy task.
It is difficult to get volunteers from a community of people who suffer from pain and exhaustion. Yet Marly has many people who try their best to help as much as they can. I edited all the newsletter articles and most of the many writing projects Marly initiated. That was my job. That was my plan. The end. Well, it wasn’t the end. How did she do it so stealthily? How did she work that magic? I can’t answer that, but I can tell you that she did, so here I am, PANDORA’S new newsletter editor.
I am dedicating this article to Joann Kaylin, my good friend and niece, for two reasons. One, she is usually the one who gets my last minute cancellations, which she handles with grace and understanding, and two, because she gave me the idea to write this when I once again had to “change my plans.”
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