Things That Have Happened to me
I have been on Low Dose Naltrexone for 3 months now, including being on the maximum dose of 4.5mgs for the past 6 weeks. I haven’t noticed any improvements yet and will remain on Low Dose Naltrexone until I begin my next treatment (whatever that may be.)
I had planned on starting Nexavir at the start of June however I have had some difficulty obtaining it. I will continue to try to obtain Nexavir and am hopeful of eventually possessing it. If/when I start Nexavir I will write a blog entry explaining its mechanism of action, studies relating to CFS and different CFS specialists thoughts on it. In the not too distant future I also hope to have intravenous Myers’ Cocktails. I have an appointment with a doctor that is experienced in giving these. If/when I start Myers’ Cocktails I will write a blog about them.
I had a blood test yesterday and will get the results in a week. I will post any abnormal results on the blog.
I recently got the results from a blood test I had on the 14th of June 2006, approximately 1 year after my CFS onset (I must have ignored these results at the time.) My natural killer cell levels were 581 (range 90 to 400.) I had natural killer cells measured on the 1st of October 2009 and they were 508. I attributed the 508 levels, at the time, to me being on inosine and inosine having the effect of increasing natural killer cell numbers. In light of my 2006 blood test, it seems that I have probably had high natural killer cell levels throughout the entirety of my illness.
My Mum is currently reading Osler’s Web (it is far too long for me to read!) Given the current CFS climate, it should prove interesting reading.
Since my last blog, a few negative studies have trickled out finding no XMRV in the CFS cohort or the general population. These studies didn’t follow the WPI’s experimental design and hence can only be considered validation attempts as opposed to replication attempts. They seem to have made the same mistakes as former negative XMRV studies, in failing to amplify, culture and activate samples, using old blood, flawed cohorts, looking in non-replicating cells and using a PCR technique that is designed to detect a lenti-retrovirus such as HIV as opposed to a gamma-retrovirus such as XMRV. XMRV’s lower titre levels mean a unique PCR technique is required (if PCR is going to be used at all.)
A German study, found here: http://www.cdc.gov/eid/content/16/6/pdfs/10-0066.pdf has backed up the WPI and Japanese studies finding XMRV by also finding XMRV. The Germans found it in respiratory secretions (although this doesn’t mean that XMRV is necessarily transmissible through the respiratory tract in a medium such as sputum.) They found XMRV in approximately 3.2% of the healthy controls and approximately 10% of the immunocompromised patients they tested. The implications of this result have been analysed extensively on the Phoenix Rising forums here: http://www.forums.aboutmecfs.org/showthread.php?5031-German-study-finds-xmrv
Dr Klimas gave a lecture on ME awareness day, the lecture can be found here: http://cfsknowledgecenter.com/expert-assistance.php
In the lecture she mentions that a “confirmatory” study is about to come out. Her comments are slightly ambiguous as some are interpreting them as meaning the German study was the “confirmatory” study she alludes to. I have listened to her comments in context and believe she uses the word “confirmatory” in the sense of confirming the original WPI study so hopefully this is the case.
On the Phoenix Rising forums, a topic that I find very interesting has emerged. The discussion centres on something called “crimson crescents. ” These crimson crescents are found in the throat. They appear as long crimson lines, on each side of the throat. The research on them was done in 1992 and the study showed that they are found in the mouths of 80% of CFS patients. This is compared to 3%-5% of non CFS patients with sore throats. These numbers are remarkable and are almost a biomarker. I have also read that the conspicuousness of these crimson crescents correlate with the severity of the CFS. Despite this, I have heard anecdotal reports of CFS patients originally having crimson crescents during the onset of their CFS and the crimson crescents disappearing, despite their CFS persisting. I have highly conspicuous crimson crescents that look like someone has cut both sides of my throat.
A discussion of crimson crescents and CFS can be found here http://www.forums.aboutmecfs.org/showthread.php?5114-XMRV-in-respiratory-tract-4-positive-controls-crimson-crescents
SPECT Scans and AIDS
Given the potential link between CFS and a retrovirus, I found this website interesting:
http://fm-cfs.ca/CFS_spect_scans.html (scroll to the bottom part of the page.)
It reports that Dr Mena found 71% of CFS patients have impaired blood flow to the brain as measured in a SPECT scan. What I find interesting is that the Houston Immunological Institute found AIDS patients had exactly the same (71%) impaired blood flow to the brain. The article goes on to explain the “striking similarity” between the SPECT scans of AIDS patients and CFS patients. In other words, it looks as if AIDS patients and CFS patients have impaired blood flow to a similar part of the brain.
Invest in ME Conference 2010
The Invest in ME conference has been recently held in London. An excellent blog has an informative review of the proceeding there. The blog can be found here: http://cfspatientadvocate.blogspot.com/2010/05/london-conference-may-24-2010.html
It is a critical time in the CFS world right now and a paper one way or another could determine a lot of CFS patients’ lives. Despite this I am not going to sit (or rather lie down) idly waiting for studies but am going to pursue different treatments, with Nexavir hopefully next on the list.