Recommendations for Persons with Chronic Fatigue Syndrome (or
Fibromyalgia) Who Are Anticipating Surgery
by Dr. Charles W. Lapp, MD
12-26-2007
[This information was developed to reduce the risk of surgical
procedures for ME/CFS/FM patients. It is evidence-based (see
bibliography) and meant to be shared with the patient's professional
healthcare team. Dr. Charles Lapp, MD, directs the Hunter Hopkins
Center for ME/CFS/FM in Charlotte, NC, and is co-author of a 2-hour
online course on CFS Diagnosis and Management for healthcare
professionals, developed with support from the CDC and CFIDS
Association of America.]
Read this article at
http://www.immunesupport.com/library/showarticle.cfm?id=8592
* * *
This is a subject of particular passion for my business partner, who lost her younger sister to a post-surgical infection that someone with a healthy immune system would have easily fought off. R.I.P. Deborah -- another member of our growing CFS Memorial List.
Some of the experts have suggested CFS patients facing surgery or dental work should prepare for it by taking antibiotics in advance. This is a precaution you should discuss with your doctor.
ADDENDUM
A recent posting on this list provided a link to some "Recommendations for
Persons with Chronic Fatigue Syndrome (or Fibromyalgia) Who Are Experiencing
Surgery." They were suggestions of from one clinician. Many patients inquired
about these suggestions after this was posted. The National CFIDS Foundation
only makes recommendations that have been scientifically proven. The following
anesthesia protocol has been shown to eliminate the adverse and
life-threatening effects of anesthesia that has been experienced by many of those who have been diagnosed with CFIDS/ME. The study was done on patients who were
diagnosed according to the more strict Holmes (1988) criteria, the first criteria by
the CDC for "CFS". The papers referenced can be seen on our website at
http://www.ncf-net.org .
ANESTHESIA
PROTOCOL
Anesthesia has adversely affected patients with CFIDS (also known as chronic
fatigue syndrome and myalgic encephalomyelitis). The reason for this has been
found. Recent research* funded by the National CFIDS Foundation, Inc. found
that a substance, much like ciguatera toxin, is being produced in the body by
a disease process in those with CFIDS/ME/CFS. Dubbed the "ciguatera epitope,"
this research explains the danger of using any anesthesia that uses the
sodium channel at the cellular level. Some anesthesiologists have had success
blocking the sodium channel during anesthesia for CFIDS/ME/CFS patients.
*_J Clin Lab Anal, 6/2003, Hokama_
(
http://www.ncf-net.org/library/Hokama-JClinLabAnal.htm ) et al, _J Toxicology, 12/2003, Hokama_
(
http://www.ncf-net.org/library/JoTox-CPhaseLipids.htm ) et al.
For better health,
Gail Kansky
President, National CFIDS Foundation, Inc.
103 Aletha Rd.
Needham, MA 02492-3931
781-449-3535
http://www.ncf-net.org Tags:
CFS,
fibromyalgia,
surgery,
infection
2 comments:
My sister CARED about being as healthy as possible. Despite her illness she managed to become an accomplished skier. She's done scuba diving (something for which you need to pass medical checkups!!). She ate good healthy food. She could have been a model with her figure as she attended the gym twice a week. She checked daily for her diabetes and CFS symptoms and knew how to manage both diseases in such a way that they wouldn't control her. She did an enormous amount of charity work too. Yet on the phone one week before she died she admitted to me to have not checked her symptoms lately as she was too busy with study!
So my suggestion is to keep checking ALL your symptoms. Keep a diary of them. So if something in them changes you can alert your doctor of them and maybe, perhaps maybe, stop your own family suffer the untimely tragedy that my family suffered and still suffers.
To be precise the events surrounding the death of my sister who died tragically were as follows. She was just 22 years of age at the time she died with a promising career as an architect that she would have started in 2010.
About a week before Deborah died, I spoke to her on the phone, and she was at her university lodging. She was complaining about her room being a mess. I told her to leave it and ask one of room mates to tidy it up for her. She had visited me 2 days previous with my mum and when she was here she had complained of exhaustion (yes people with CFS DO have exhaustion too just like healthy people except they are more prone to it).
Then a week later, I was sitting at my desk stitching one of my designs. The phone rang. I answered it and it was mum. I knew immediately something was wrong by the tone of my mum's voice. If you want to know what can drain all life out of a mother it is to tell her other two daughters that their sister has died. My other sister Peggy STILL suffers from losing Deborah as they were always really close (that's because they were just 3 years apart in age). When mum said she had bad news I thought that maybe my grandma had died but then she said: "Debbie died tonite". It took like 10 minutes for me to register fully what had happened. Mum then proceeded to explain what had happened.
Deborah died on Thursday night. She started complaining on Sunday evening of stomache cramps. She was admitted to hospital the same night. Tests showed that she needed surgery, and on Thursday (after stabilizing my sister's symptoms) she was admitted for surgery. When the surgeon checked my sister it became evident immediately that there was nothing that could be done for my sister as all her organs were breaking down simultaneously. I've been described it as them "becoming mush" inside here.
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