Coagulase Negative Staphylococcus
I am currently halfway through treatment using a modified version of Dr Shoemaker’s protocol. A good summary of what Shoemaker’s protocol is/was can be found here
I say “is/was” as his more recent work is heavily dependant on tests to monitor progress. His recent work does look interesting however living in Australia where many (if not all of) of these tests are unavailable makes it difficult for me to complete. His recent study/protocol can be found here http://sacfs.asn.au/news/2009/06/06_09_deficits_cognitive_functioning.htm
The onset of my CFS was several months of coughing up mucus before this symptom was joined by other symptoms. This coughing up of mucus, stemming from post-nasal drip has continued everyday since the onset of my CFS to the point of me coughing up mucus at present several hundred times a day. I have always considered this onset to be potentially significant to the root cause of my CFS. There is some literature on the internet linking the post-nasal drip, sinus problems and nasal congestion of CFS patients to the CFS itself. This is through the mechanism of toxin producing Coagulase Negative Staphylococcus located within the nasal passages. To determine if someone has coagulase negative staphylococcus, a nasal swab is necessary.
There is some conjecture as to the type of technique the nasal swab needs to be subjected to in testing for coagulase negative staphylococcus. Some specialists send it off to any old lab for testing. I believe only very specific labs use the right techniques to determine if one has coagulase negative staphylococcus. These labs use an API-STEP technique when testing the nasal swabs. They culture the swab for over 3 days (compared with one day for normal labs.) It is for this reason that I haven’t been tested sufficiently for coagulase negative staphylococcus. I have done some research and have not found one lab in Australia that uses the right technique. Bioscreen Medical in Victoria did test for coagulase negative staphylococcus using the right technique however to my knowledge don’t do this test anymore.
The Shoemaker protocol wouldn’t be my first choice of CFS protocol however due to my excessive sinus related symptoms and onset of CFS I have chosen to follow it to the extent that I can in Australia. Part of the protocol that I can do to monitor progress is the Visual Contrast Sensitivity (VCS) test. Information about this test and to take the test (although it does cost money to take) can be found here www.chronicneurotoxins.com
Essentially the test determines if you have visual contrast sensitivities. Dr Shoemaker links these to his neurotoxin theory that ties in with his protocol. I tested positive for the VCS test.
I have taken Cholestyramine (Questran) for the past month. The normal Questran isn’t available in Australia so I have been taking Questran lite. I have taken 2 packets of Questran lite 3 times a day. It must be taken at very specific times, away from tablets as it will reduce the tablets effectiveness. After one month of this, I reduced the Questran lite does to 2 packets 2 times a day. At the same time, I started Bactroban and Doxycycline. I apply the Bactroban 3 times a day and take the Doxycycline (100mg) 2 times a day. It is necessary to be careful when taking the Doxycycline as it must be taken at certain times so it doesn’t get absorbed by the Questran. The Bactroban and Doxycycline both last for one month. The Questran finishes now as well.
What they do?
Questran: This is normally used as a cholesterol lowering medications. It binds bile and hence stops it being reabsorbed. Dr Shoemaker believes the Questran eliminates the toxins.
Bactroban: This is an antibiotic ointment that needs to be applied deeply into both nostrils. It is used to eliminate the coagulase negative staphylococcus from the nasal passages.
Doxycycline: This is a tetracycline antibiotic that can treat a variety of conditions. One of the conditions it can treat is Methicillin resistant Staphylococcus aureus. It shouldn’t be used in children as it can cause permanent tooth discolouration. I am excited about using Doxycycline as it is also used for Lyme disease and sinusitis and I suspect I may have these as well. Some doctors in the past have used Doxycycline to treat CFS however its use isn’t substantiated.
At present I am one month into the two month protocol. I have only been on the Bactroban and Doxycycline for 2 days and have been on the Questran lite for a month and 2 days. I haven’t noticed any change in symptoms to date. The only change has been what I suspect is a mild herxheimer effect. The Questran seems to be having the same effect as when I was on the antivirals. I feel like I have an oscillating cold. This involves every week, once a week for a few days feeling like I have a cold and having a runny nose. I will update this blog after I have finished this 2 month treatment.