Low Dose Naltrexone Update
I have taken Low Dose Naltrexone (LDN) for 3 ½ months now. That includes taking the maximum dose of 4.5mgs for the past 2 months. I haven’t noticed any improvement in CFS symptoms while taking the LDN. While taking the LDN I have been experiencing an increased rate of mucus discharge, nasally. While taking such things as mild, “natural” antivirals in the past I have also experienced this higher level of mucus discharge nasally. It normally lasts for 3-5 days. It very much resembles having a common cold however I believe it is more likely to be a Herxheimer reaction. While taking the LDN this Herxheimer-like reaction has occurred approximately at 2 week intervals (overall about 6 distinct times since starting the LDN.) The most intense of these Herxeimer-like reactions has occurred over the past 2 weeks.
To give some quantitative measure to the nasal mucus discharge, I will describe the number of tissues I have gone through (this is a separate number from the tissues I use to cough up mucus.) I normally use (while not in one of these possible Herxheimer stages) about 50 tissues a day for nasally discharged mucus. From 2 weeks ago up until a week ago I was using about 1000 tissues daily for nasally discharged mucus. From a week ago until yesterday I was using approximately 1600 tissues daily for nasally discharged mucus. To put it bluntly, my nose is continuously running and I believe it may be due to the LDN.
I had a blood test done several weeks ago and here are the abnormal results
Immunoglobulin A=0.4 (normal range 0.6-4.5)
Immunoglobulin G= 6.45 (normal range 6.5-17)
Immunoglobulin M=0.62 (normal range 0.5-2.2)
Below are the same tests done at a different laboratory about 1 year ago.
Immunoglobulins: IgA = 0.5 (range 0.7 – 3.5) 22nd April 2009
IgG = 7.6 (range 6.5 – 14.5)
IgM = 0.6 (range 0.6 – 2.6)
As you can see, all my immunoglobulin levels are comparable to a year ago. My IgA and IgG levels are currently low and IgM levels are borderline low. This seems to indicate that I have some form of an impaired immune system. The LDN doesn’t seem to be having an effect on my immunoglobulin levels despite it being touted sometimes as an immunomodulator (although it may modulate another aspect of the immune system such as NK, T or B cells.)
Digestive Enzymes and Calcium Supplement
In a weeks time I am going to start taking digestive enzymes and a calcium based supplement powder. I won’t write too much about these treatments as I don’t hold a lot of hope for them. They are mainly intended as an interim treatment before I hopefully start Nexavir and Myers’ Cocktails. Many CFS patients are thought to have leaky gut syndrome which results in nutrients not being absorbed properly. Possibly related to leaky gut syndrome, many CFS patients have digestive problems. I am using the digestive enzymes to hopefully maximise my nutritional absorption from food.
The calcium based supplement contains; potassium chloride, calcium lactate, calcium carbonate, calcium gluconate, calcium triphosphate and magnesium carbonate. I am taking the calcium based supplement for two reasons. Firstly, the calcium to magnesium ratio is important to monitor and I have been taking magnesium supplements for 4 years now with only a small amount of calcium in the multivitamin supplement I take. The second reason is that the supplement contains potassium chloride which my former CFS specialist recommended to me 4 years ago and I stopped taking 2 years ago. I emphasise once again that I don’t consider these two supplements to be a serious treatment for me. They are only an interim treatment (unlikely to have any effect on me) and something to try until I can obtain the Nexavir and Myers’ cocktails.
For the next several weeks I am going to be taking a small amount of sports drink daily. The theory is that it may increase blood volume which is about 70% of what it should be in CFS patients.
A discussion on electrolyte and CFS can be found here: http://www.forums.aboutmecfs.org/archive/index.php/t-3847.html
An article discussing the theory of increasing blood volume in CFS patients through electrolytes can be found here: http://www.causeof.org/cfids.htm
AIDS vs CFS
While browsing the web, I stumbled across a fascinating article (found here: http://www.fms-help.com/aids.htm ) that is very topical, given the current XMRV research. It is titled “Is CFIDS Related to AIDS?” It draws countless comparisons between CFS and AIDS and seems to argue that CFS is caused by a retrovirus similar to AIDS. I find it fascinating that this article was written in 1993, in the ‘Elaine De Freitas era.’ The article links CFS and AIDS through such means as HHV-6, HHV-7, impaired monocytes, the unique immune systems of CFS and AIDS patients, brain defects, sinusitis, prostate cancer and CFS, abnormal T4 cells and the blood supply possibly being contaminated. The article is full of various research papers to back up its arguments. I do not know if some of these research papers have since been refuted.
The article also touched on some of my more “unique” CFS symptoms that get little mention elsewhere. These include the article’s chapters on; crimson crescents, sinusitis, heart murmurs, gum disease, bladder problems, skin rashes, hair loss and being in the sun making CFS worse.
In the past I have written about my desire to try GcMAF. Obtaining it seems to have gone from a pipe dream to a no hope. A topic on the Phoenix Rising forums (the topic can be found here: http://www.forums.aboutmecfs.org/showthread.php?5345-GcMAF-trial ) recently discussed GcMAF and a forum member received a reply email from a company in the UK that is currently trialling GcMAF. It seems not only is it hard to obtain (which I had already found out) but it is also currently restricted by many countries customs as it contains animal and human DNA. Living in Australia, we have quite strict quarantine laws, hence even if I could find a GcMAF source, I believe customs may confiscate it. I still believe GcMAF has great potential as a treatment for some subsets of CFS.
I will continue taking the Low Dose Naltrexone and observing and reporting any Herxheimer-like effects. I will also blog about the effects (if any) the digestive enzymes, calcium based supplement and electrolytes have on me. I will hopefully obtain some more serious treatments in the coming months such as Nexavir and Myers’ Cocktails. As days pass, the CFS community continues to wait for XMRV news. So far we (the patients) don’t know much more than we did in October 2009 but that could change soon.