Your recent article about Lyme Disease risk failed to convey the magnitude of the raging Lyme Disease epidemic. The statistics cited in the study are very misleading on several levels. First, it is now known that strains of Borrelia other than Borrelia burgdorferi exist in other parts of the country and were not tested for in this study. Secondly, the number of officially reported cases represents only a small fraction of the real number of infected individuals.
I myself was misdiagnosed for decades, enduring a plethora of disabling symptoms. I had always tested negative for Lyme, but it turns out that standard testing misses up to 70 percent of cases. Misdiagnosis results in patients developing the chronic form of this disease, and treatment takes years. The so-called ``mainstream'' medical community's response to this epidemic has been nothing short of a public health disaster.
I know now that my mother died of this disease, and all my siblings have it.
Many reading this letter have Lyme Disease but don't know it. Perhaps they have been diagnosed with arthritis, fibromyalgia, ringworm, MS, Lou Gehrig's, cardiac arrhythmia, tendinitis, seizure disorder, migraines, stroke, neuropathy, gout, Parkinson's. OCD, schizophrenia. bipolar disorder or panic disorder. Lyme can mimic a hundred other diseases, just like syphilis, another spirochete infection. The CDC actually admits that the real number of Lyme cases is probably ten times the reported number. Many Lyme experts believe there are actually millions of cases, most undiagnosed.
Half my neighborhood has Lyme disease, yet most are misdiagnosed. Recently, two individuals I tried to guide to appropriate Lyme treatment died, ages 57 and 67. Because they were diagnosed too late, treatment could not have saved them. Their primary care physicians did not take their complaints seriously, and they basically just watched their patients die.
Even our local hospital and walk-in clinic are woefully ignorant about this disease. When I presented with the secondary rash of chronic Lyme they told me it was ringworm. It was not ringworm, and I even got an apology from the CEO of the hospital.
I urge your readers to see an ILADS Lyme specialist for proper diagnosis and treatment. Don't be surprised if your PCP ridicules the whole idea of chronic Lyme. Mine did too, but he now admits he was wrong. My diagnosis has been confirmed by testing at a Lyme specialty lab.
To learn the real truth about Lyme disease, watch the documentary ``Under Our Skin.'' When the truth finally emerges about the prevalence of this disease and the horrific suffering it causes, it will cause a medical scandal the likes of which this country has never seen.
Paul XXXXXX
XXXXXXXX, CT
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
My letter was published in this morning's paper and I just got my first call. Local resident called to tell me what happened to his 27 year-old daughter. Since September she has suffered from severe neurological symptoms: slurred speech, trouble walking, now almost bedridden. They went from doc to doc to doc. Her complaints were DISMISSED by all, including YALE (surprise), as psychiatric in origin. Yale confined her in their psych unit for 5 days and then dismissed her.
Of course all standard Lyme tests were negative UNTIL, LO AND BEHOLD, a spinal tap was positive for Lyme. A local neurologist (not known to be Lyme-literate, I saw him 20 years ago) has put her on IV abx for Lyme.
Yale is now saying, "Impossible!!!! She can't have a positive spinal tap and negative blood test!!!" Yale is sticking to their guns saying she cannot possibly have Lyme.
This is INSANITY.
update: I forgot to mention that she is going to have a brain biopsy as neurologist fears progressive encephalitis has set in.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Link should work now. Tomorrow you would have to look for Feb. 14th letters.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Congrats Paul, on another great stride in activism and getting the word out.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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You only offer one side of the picture! There are two sides in this debated issue. You align with the IDSA model that denies options to physicians and patients, and limit or exclude their voices.
Gary Wormser and his chronic Lyme disease study top your contributors on Chronic Lyme Disease. The majority (all?) of your posts are IDSA Lyme-speak, implying that Lyme is difficult to catch, easy to diagnose and readily cured with short term antimicrobials. But Dr. Wormser's study was hotly contested by qualified physicians and patient advocate groups as being fatally flawed.
Reading your contribution to this debate I only see one side advanced, the side that defines chronic or refractory Lyme disease as subjective or auto-immune caused. But many persons, inadequately or improperly treated for Lyme disease, DO HAVE objective evidence of active infection. They DO continue to improve when they are given ongoing antibiotics.
Dr. Wormser, the IDSA and HMO officials can't see it because they are interested in profits, not patient welfare. Alas, you snuggle up to them, and promote their propaganda. I am among the unfortunate patients who find it impossible to find a local MD to offer beneficial IV antibiotics even when IV antimicrobials are the only useful treatment for me. I was formerly treated with IV immune globulin: higher in cost and without ongoing benefit but apparently preferred by insurers. Does someone game the system to make $$ from IVIG?
The IDSA selected medical literature that they liked, rejecting everything else. Now you advance their just-so story and pile on after a late hit out of bounds.
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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Excellent job. I don't see how much longer the absurd IDSA position can withstand the onslaught of new scientific evidence proving persistence even after aggressive treatment for 90 days. The recently released Embers studies basically destroy IDSA. This evidence is HUGE.
Has anyone heard any of the IDSA worms responding to the Embers study?? How could they possibly dismiss this evidence?
Also HUGE is the discovery that the "Iceman" (3,000 year-old mummified human found in the Alps) had LYME DISEASE. They did a DNA sequence going deep into his bone, and found 97% human DNA and 3% Borrelia burgdorferi DNA!!!
This means that Lyme is NOT a new disease. It has been infecting humans for a long time. The Iceman had degenerative arthritis and heart disease, yes HEART DISEASE. This human ate a 100% organic diet with no processed foods and I'm sure he got plenty of exercise. It had to be Borrelia infection causing the heart disease and the arthritis.
What the Iceman also tells us is that Lyme Disease is NOT a rare phenomenon. It had to have been common enough to show up in this one cadaver out of millions from that era that we have been able to study.
I believe it will eventually be shown that tick-borne infections are the cause of most chronic illness in humans.
I don't see how the IDSA can last much longer in the face of all this.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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