Do you have any other symptoms ? (muscle aches... fatigue.... unrefreshing sleep.... joint pain... etc. ?)
Some muscle ache, mostly around the pulmonary area and not necessarily related to anything but occasional stress I suppose (clear chest x-ray, no cough), general fatigue and unrefreshing sleep at times, no joint pain or any signs of it being reumatoid.
Mostly just these recurrent infections, over and over again.
Has your physician ordered an ANCA lab test on you ?
Hi...I hope this is relevant. My son has been ill with recurrent infections for 12 yrs since he was six! It took us 12 yrs to get a doctor to refer us to a immunologist! When he was younger his immunoglobulin levels were below normal but now they are always within normal range...which i understand is frustrating when you are trying to understand what is wrong.
I think you are right to focus upon T-cells and raised lymhocytes because often my sons T-cells are abnormal but his his immunoglobulins are normal. Could you have had a transient hypogammaglobulinaemia which is where the immune system is slower to develop and you are now suffering the effects of recurrent infections? Are you having normal Liver Function Test results? Flip the coin over! It is easy to assume that you have an under active immune system when in fact your immune system could be OVER reacting. This is the approach they are now taking with my son...it seems to help,far less fatigue, pain, ear and skin infections. He is having antibiotic therapy every other week along with Montelukast which is an anti leukotreine therapy most frequently used in asthma...it seems to have helped as he doesnot seem to have permanent sinusitis now! Please do not let dr's tell you everything is ok because your immunoglobulins come back normal......get a referral to an immunologist as there are
many things they can investigate and look for. Do not put up with recurrent infections as it will have an effect on your health...an immunologist may try therapies to prevent you always being prone to infection. Please let me know how you get on!
I have Chronic Fatigue Immune Dysfunction Syndrome and for years, I had numerous sinus infections, URI's and UTI's. I've never had my CD4 levels checked, but most CFS patients will have a low CD4 result.
Thank goodness there is a test that can officially diagnose CFIDS and it will be available soon.
Have you had your D-Dimer checked? That is specific to your lungs. Mine is elevated. If elevated, it means that there is inflammation in your lungs. Also, a chest x-ray may show nothing. I had a CT with contrast as well as a chest x-ray and both were negative. I DO have lung inflammation tho. Just not real bad.
Also, an elevation in liver enzymes can mean chronic or acute inflammation.
I'm tested every 6 months. How often are they monitoring your labs? I think some people are sensitve to the changes in their body or in tune with their body...sometimes before the labs come back positive....Stay on top of it....Get more testing until you get an asnwer.
You mention a specific test for CFIDS can you tell us any more about it? Do you know what it is called
I have for many years been battling recurrent Mycoplasma pnemonia. Mycoplasmas are a bug that are somewhere between a virus and a bacteria. There are different strains of them. It actually invades your cells and can hide there. Some people never really get rid of it. From what I understand antibiotics won't kill it, they just keep it from reproduing. Currently I have been taking Biaxin for a month. I start feeling better and then all of the sudden some more of the little creeps come out of hiding and attac again and I get worse for a couple of days. Then my body manages to kill that group of them and I feel better again. The strain of Mycoplasma I have loves to live in respiratory tissues as well as other places.
The past couple months before I was finaly diagnosed as having the bugges again, I startd to have autoimmune type symptoms. Odd pain in twinges in unusual muscles. I could not exersise because even slight exercised evoked pain for a week or two. Since I have been on my current regimine of Biaxin the muscle problems and all bladder problems have cleared up.
The most frustrating thing about these little buggers is that few doctor believe that Mycoplasma's can be so devistating to some people. Most doctors I run into tell me that its just a thing kids get. Others tell me there is nothing wrong with me becasue my general blood work and x-rays always comes back fine.
You should try and have the genetic identity of the mycoplasma made. This is done through a live bood analysis, as mycoplasma are so small they are difficult to find and can not be grown out of the body. You need to do this when you are having active symptoms and before you go on any antibiotics. There are antibiotics for mycoplasma but only specific ones work and sometimes you must take them for a very long time (months).
You might want to go to immed.org or rain-tree.org and read some of the information there. Let me know if yo need any more help. P.S. No matter what they say there is something wrong, you are not crazy.
Thanks so much for your responses everyone!
I'll get back to my doc with a to-do list once I've figured out the translations for all the suggested tests (I'm in Norway - a country of excellent health care but with a tendency to go with the "whatever doesn't kill you only makes you stronger"-approach to weird ailments). Keep the suggestions coming. =)
Red Labs USA is doing this test on spinal fluid (I know... ouch !). It is still in the research phase, but the FDA is expected to approve this test. However, people who are interested in getting tested can go to their website and contact them (it is a national lab). It will cost money, but it is free for those people who are on Medicare.
I wasn't aware that the d-dimer test was specific to the lungs ? I think it was a coagulation test.
I agree with your post. As you are aware, I'm on a treatment that is killing the mycoplasma and causing my immune dysfunction. Dr. David Jernigan is also successfully killing mycoplasma and other organisms. The good thing about his protocol is that there are no antibiotics involved ! My mother, who has Sjogren's, just started his protocol and is already having herxing symptoms.
Good luck with your future appointments and your health !
I just realized that you live in London. The physician who started Red Labs USA practices in Brussels and he has a lab there as well. (sorry... can't remember the name of it). He often sees and treats CFIDS patients as well and is considered one of the leading authorities on CFIDS.
Thank you, that is interesting. I hope you are feeling well.