Note to Lyme Treating Doctors
July 2016
Next to a Lyme treatment center in NJ (a 3 wks. cures all place) lived a scleroderma clinic (about 10-20 yrs ago). Patients leaving the Lyme clinic (undertreated) often remained ill and many eventually ended up in the scleroderma clinic with what I suspected was actually Lyme ACA.
Treatment for scleroderma was steroids and the life expectancy was 5 years once diagnosed.
Patients in Maryland (especially eastern shore and Kent County where they still treat chronic Lyme with steroids) were referred to scleroderma clinics with no confirmed diagnosis of Lyme because it was either overlooked or the false negative tests ruled it out.
We lost patients who actually had chronic Lyme with the Lyme ACA (Acrodermitis Chronica Atrophicans) presentation. When trying to help these patients (by educating doctors) the doctors said there is no "ACA" in the USA. They were not open to the thought that theory might be wrong.
I began mapping the ACA cases years ago as patients contacted me for assistance. The highest rate of ACA at that time was along the Atlantic Coast (mid-Atlantic mostly) and continued inland about 50 miles along the Atlantic fly-way.
Several years later I noticed the range expanded inland another 50 miles or so and moved futher north and south. Cases were popping up in other areas, even in the mid-west and in CA, but not enough to see a solid pattern at that time. (None of these patients had been out of the country.)
My point- yes, I have one... actually two...
1.) Lyme ACA can present in patients in the USA (with no history of foreign travel). We've got patients both here and overseas continuing to be misdiagnosed who are not receiving treatment.
2.) Only a handful of LLMD's recognize, acknowledge and/or treat Lyme ACA.
Patients with Lyme ACA have donated photos of rashes and skin manifestations that you can see here. Livedo and edema often present with, or prior to, the Lyme ACA presentation.
Lyme & Tick Borne Disease Rash Photos
If the above link doesn't work, please try this one.
https://goo.gl/photos/o7HyNL9oesj9GsUU8
Late Stage/Chronic Lyme ACA Rash- Progression
If the above link doesn't work, please try this one.
https://goo.gl/photos/GFJwsESt5AmRgxYN7
In 2017 Wormser, along with another guideline author, et. al. published a paper making ACA appear to be not Lyme related, but related to "old age" instead. Here is the link to that abstract...
https://www.ncbi.nlm.nih.gov/pubmed/28017623
From 1984 thru 2017 only 41 papers world wide were published on Lyme ACA. (See list below.)
FINALLY- Here is a article indicating 18% of the scleroderma patients in one study tested positive for Lyme disease.
Vector Borne Zoonotic Dis. 2016 Jul 7. [Epub ahead of print]
Is Localized Scleroderma Caused by Borrelia burgdorferi?
Zinchuk AN1, Kalyuzhna LD2, Pasichna IA3.
- 11 Department of Infectious Diseases, Danylo Halytsky National Medical University , Lviv, Ukraine .
- 22 Department of Dermatology, National Medical Academy of Postgraduate Education , Kyiv, Ukraine .
- 33 Department of Therapy, Danylo Halytsky National Medical University , Lviv, Ukraine .
Abstract
Despite considerable achievements in the study of localized scleroderma, the etiology of the disease has not been investigated completely. Borrelia burgdorferi-the agent of Lyme disease-is suggested to be one of the possible etiological factors of localized scleroderma.
However, among scientists, this hypothesis is quite controversial. We have conducted investigations of the level of IgM and IgG class antibodies to B. burgdorferi in the serum of patients with localized scleroderma.
To rationally substantiate the role of B. burgdorferi in the occurrence of localized scleroderma, thirty-two patients with localized scleroderma treated at an in-patient department were examined. The level of anti-Borrelia antibodies was determined in ELISA.
Diagnostic levels of IgM and/or IgG were detected in 18.8% of patients with localized scleroderma, which is more than in the population (p < 0.01).
Positive levels of anti-Borrelia antibodies in patients with localized scleroderma confirm the borreliosis nature of the disease, requiring conduction of complex antimicrobial treatment.
Link Here http://www.ncbi.nlm.nih.gov/pubmed/27387068
NJ Scleroderma Center
Quote- "This scleroderma center is about 45 minutes east of New York City. This center was formerly known as UMDNJ."
This scleroderma center is led by Dr. Vivien Hsu, who has over 25 years of experience in this field. Her interests are scleroderma and related connective tissue diseases, myositis eosinophilic fasciitis, morphea, rheumatoid arthritis, psoriatic arthritis. This is a good center for adults who have any type of scleroderma, either localized (such as linear or morphea) or systemic.
Scleroderma often takes many years to diagnose because of insidious onset, vague initial symptoms, and low physician and public awareness. It is typically diagnosed and treated by rheumatologists, but because it is a rare and very complex disease, there are only a few dozen scleroderma specialists in the United States. Expert care can be crucial for proper screening, diagnosis, patient education, clinical trials, and treatment."
http://www.sclero.org/scleroderma/experts/united-states/new-jersey/new-brunswick/a-to-z.html
Thank you for listening!
Lucy Barnes