Dear friends,
I am a new member of the forum. Thank you for those who administrate and support this forum and the help been given to so many people.
I have been sick for about 6 years and now I spend 15-20 hours daily in bed. I'm on the process of finding a correct diagnose.
In my case I have a consistent immunologic pattern of:
Lymphocytes: High
Neutrophil: Low
Immunoglobulin E: Very high
Doctors think this indicates a chronic viral infection and over active immune system.
Let me please make some questions and listen to your opinion:
- Can I be immune depressed if my body still produces lymphocytes and immunoglobulin E which shows is reacting to something wrong?
- Can I be immune depressed and immune over active at the same time?
- Is it not the common pattern in CFS to have low lymphocytes instead?
Thanks so much for you valuable opinion.
Cheers!
Your immune pattern is/was similar to mine. When blood work comes back it usually says a current viral infection. My ige was also slightly elevated but my dr told me that many asthmatics have ige levels in the thousands, so its high but not abnormally high.
My natural killer cell function was quite low but nk numbers were within normal range. My neutrophils seem to have gradually kept getting lower. My total lymphocytes came down with antivirals which i still remain on. I have gone off antivirals and total lymphocytes have shot up again. Lymphocyte subsets eg cd8 cd4 etc have been mostly high even though total lymphocytes have come down to high normal.
Ive also felt better on antibiotics. Low neutrophils are usually associated with bacterial infections although viruses can lower them.
Although retroviruses are unproven in cfsme and the big debacle with xmrv grinded any research in that area to a halt. I think there might be something to this. Although antivirals and antibiotics have helped and stopping them i get worse with blood tests indicating this also, there seemed to be something still missing.
Out of total frustration of no real treatment and reoccuring shingles episodes which i think indicates suppressed immune function, i started tenofovir an antiretroviral drug. Ive been on it for over 12 months now, im not going to say im cured but its taken me to a much improved and stable level. Once every 4 to 6 weeks i get crushing headaches for about 2 days which i think might be related to shingles as thats where ive had the shingles outbreaks ( also a condition called mollaret's meningitis which sounds identical to cfsme and caused by different herpes viruses such as shingles ebv etc) and i increase my antiviral medication plus a few other treatments directed at shingles virus. This seems to stop this from progressing to anything else and i bounce back quickly.
I still have sleep problems but not as severe and function ok with this and some aches and pains plus still pace myself to a certain degree but im working 4 days a week and usually do overtime on those days. I have been doing weight training twice a week and starting to push myself quite hard. Very rarely get any sort of pem that a days rest doesnt sort out.
I dont really know whats going on but i think there could be an underlying virus or retrovirus thats suppressing the immune system and thats why we see many different viruses like shingles, ebv/cmv mono etc as well as ongoing bacterial infections like sinusitis, mycoplasma etc etc. Maybe the retroviral drug is treating these different viruses like ebv and cmv. Maybe its modulating the immune system some how as it can lower certain inflammatory cytokines. Maybe its a combination of the above.
All i can saying is antiretroviral drugs have made a significant impact on me and other antivirals and antibiotics seem to be secondary helpers. There are others who have improved with antiretroviral drugs yet it seems like theres some sort of conspiracy theory against cfsme. I just cant believe many of the cfs researchers who say infections arent implicated in ongoing issues with cfsme, instead some of these so called gurus are fluffing about secondary issues like inflammation etc thats fine but something is causing it. Many cfsers blood work looks like ongoing infections yet researchers continue to look away.
I think there are probably many infections going on in mecfsers but one main bug thats stirring up the ants nest. I also think the longer one is sick, the more infections they have and the harder it is to turn things around. Theres something the medical establishment are hiding from us. Its not the fault of many drs working on the ground but higher up the food chain. How can so many people have an invisible illness thats only diagnosed after discounting everything else yet not everything is tested for???
Cheers!!!