I am waiting to go back and see my rheumatologist next week. Bloods so far show low immunoglobulin m, low c3 and c4 compliments which are basically part of my immune system
I also had low haemophilus influenzae levels too and wondering if CFS can cause low immune system
Just wondered if anyone else had similar experiences
Thanks
Many ME/CFS doctors think the immune system is actually up-regulated. They therefore prescribe immunomodulaters. I was prescribed Sinaquan (doxepin) when I first got the illness. Sinaquan is a tricyclic antidepressant, that, when used in small doses, acts to modulate the immune system, rather than acting as an antidepressant. This medicine was like a miracle drug for me, taking me from deathly ill to almost normal. Unfortunately, I pushed myself and relapsed.
Hi Jackie are you still taking Doxepin?
I am, but thinking of getting off it. its benefits greatly decreased when I had my first major relapse. One other benefit I had when first taking it: it greatly helped my sleep. I took it right before going to bed.
Hi Nichola; I know there's still a lot of research to do on this topic, but from my experience, and what I've read, yes; CFS is an Auto-immune disease, and does lower our immunity......and from my experience, when I catch a cold, it is very hard to fight it, and it stays with me for a Very long time....last year I caught the family cold, and was sick for nearly 3 months....I just started to feel better, and wham, then I'd be back at the beginning.....a very miserable winter......Bron
Thank you I never even realised it was an auto immune disorder, still learning. That makes sense then, as I always get run down n I'll every few weeks.if I got tummy bug it would last 2 weeks to get over it.
weirdly I have never been able to go in swimming pool, prior to finding out about me having CFS I would find that if I went in pool, a week later I would be ill, also if I got wet from outside, hot tubs do it too.
and on holidays if I go in pool to cool off within a week I am ill, get vertigo with it to, it's awful
but prob because my immune system can't handle it eh x
I go back on Friday and see what they say, they are so slow though. It's been 4 months now since my last appointment they were ruling out other causes but never have done. It's so frustrating.
Thank you
Yes Nichola; I only found out about these illnesses by going onto every web-site that I could find relating to these conditions. One report mentioned CFS being the result of too much exposure to other contagious diseases (such as Chickenpox....which is where the other name ME {Mylo-encephalites} comes from....the herpes virus attacking the Mylo Encephales covering of the brain).....however, there are still many theories, and still much research to be done.....hence at present, we/they are only able to treat the symptoms...but am sure that even by using these forums, ours and the researchers will be able to pinpoint the cause.....keep searching the net for answers, and you will be able to help all of us. One lady, Sylvia, has come across a link with our Thyroids being involved...apparently this disease has an issue with our T3T4 uptake, which causes the tiredness, as well as the cell's energy absorption....I am following that path....am due to return to my GP on Tuesday for results, and am soooo hoping to be able to trail a low dose of Thyroxin???? will get back on and tell of results for others Bron
Yeah I think there is link to Epstein Barr virus too which is related to herpes family I have tested positive for past infection but most people have and also CMV too
Actually just looked now and am positive for Epstein Barr virus so hopefully he can shed light on this Friday
I may ask them to check thyroid antibodies too as u mentioned even though my thyroid was normal it will be interesting to see if antibodies are low
Please let me know your outcome xx
There are lots of more recent research trails goin on and two very interesting ones recently are both strongly point towards the immune system "malfunctioning" after illness. I dont think i can put links here but this s actually direct from the nhs website so ill try http://www.nhs.uk/news/2015/03March/Pages/immune-changes-found-in-people-with-cfs-me.aspx I would also look up the rituximab trails They are already on phase 3 in Norway, and all of it relate back to cytokines and the immune system response....
Well yes, there are research pointing out functional deficiencies of Natural Killer cells activities in CFS patients.
And it perfectly explains how I can get fungal infection on my colon and possibly intestines, during that period. Never felt something like that before. And yet I was a perfectly healthy person 4 months before! Also, seems that small insect bites would keep being red bumps for weeks. It was like something specific was missing from my immune.
Well yes, there are research pointing out functional deficiencies of Natural Killer cells activities in CFS patients.
And it perfectly explains how I can get fungal infection on my colon and possibly intestines, during that period. Never felt something like that before. And yet I was a perfectly healthy person 4 months before! Also, seems that small insect bites would keep being red bumps for weeks. It was like something specific was missing from my immune.
Hi LizzLizz; I also agree that when our Immune System is severly attacked, the damage is Long-lasting....for although my Energy levels were decreased prior to 2005...I had an Hysterectomy in the January, and it took me Months to get better....I actually ended back in hospital about 3 months later with "some" virus that all the docs could say was "leaning towards something like Glandular Fever"...and has been a continual downslide since then.....I feel for our sakes, that we need to continue to read the research, compare notes, and trial everything suggested, as it is very stressful trying to keep going (if not for ourselves, then for others and families)???? Bron
they have now referred me to a immunologist and requested some weird and wonderful tests too. He said its as if my body is fighting an infection, and tried to say he would not diagnose ME whilst my bloods are low in immunity, however i pointed out that i have been this way for 12 years, to which is stopped and took note of me.
Do you have any root canaled tooth? If so, which tooth?