09 September, 2012

I saw an immunologist.. Blood test results that indicate some inflammation and autoimmune activity.

Last year I visited a German immunologist with a good reputation. The primary reason was infertility questions. Dr Pfeiffer is a handsome and very energetic ping pong ball of a doctor, who spent 1,5 hours chatting full of enthusiasm about immunology problems, the importance of vitamin D and zinc, the misinformation about vitamin C and so on. He suggested, after having extensive blood work results back from me and confirming I have a slightly overactive immune response with inflammation symptoms. I added the test results below, also screenshots of them.

What more things did Dr. Pfeiffer find, that are interesting for my rosacea?
The extensive blood work tests that Dr Pfeiffer did, confirmed that I have auto-immune activity, which might play a role in my rosacea and colitis and some other immune related problems according to him. He explained for a long time how this over active immune system works, and how it interferes with normal body functions; how it increases inflammation and what I can do -apart from taking steroids- to help to normalize it. The first thing he stressed was the importance of having sufficient levels of vitamin D. (Read more on the role of Vitamin D in rosacea in this blog post of mine). I was tested on that as well, and my vitamin D level was extremely low, around 8 ng/mL when they should be over 30. He advised me to either take vitamin D supplements or to start sun bathing, around noon when the sun was at its strongest, for about half an hour per day, without using sun screen. Sun screen blocks UV-penetration and therefore vitamin D uptake. This is only something people who do not sunburn easily should do. I tan and don't sunburn, so can more safely do this. There is always the risk of skin cancer but sunburn is an additional risk factor for that one. Apparently research has found that having structurally low vitamin D levels also has cancer risks attached to it, and statistically increases the risk of developing other cancer types (or turn that around; having high enough levels of vitamin D reduces the risk of developing all sorts of cancers, including lung cancer).

I have been sunbathing for about 20 minutes at noon for the past 4 months and have to say; I have been more pale and it has been harder to develop a flush for me since :)  I position myself in such a way, that my face is in the shade and body in the sun, I use a small ventilator in front of my face to prevent overheating and I am lucky enough to only burn in my face (which doesn't happen with this construction), and that I tan on the rest of my body. No burns yet, but a nice tan and my vitamin D levels were a bit higher when I tested them months later. 14 ng/mL. Still too low though, but slight improvement.

Something else Dr Pfeiffer mentioned, and that he finds important to combat the immune related inflammation, is omega 3. High Strength Omega 3 Fish Oil 1000mg (360 Capsules) He prefers it in the form of (organic) fish oil, with high DHA levels. NO omega 6, he stressed, as this is in fact pro-inflammatory. Just as vitamin D, omega 3 is supposed to help regulate the immune system. I have a problem with the high histamine levels in fish oil, but do very well with omega 3 from algae. It's not as strong as fish oil, but doesn't have the same high histamine level.
He warned however against vitamin C and multivitamins (in my case). They stimulate the immune system and that is the opposite of what we want to achieve, according to him. We want to calm the immune system down and regulate it, not stimulate it more and create even more inflammation. This is not the same problem as when someone has caught a cold or the flu and needs to boost the immune system, no matter how healthy this might sound. For people with a certain type of rosacea (and in my case the elevated immune response was confirmed with tests, so he was safe to state this for my specific case), boosting the immune system is far from healthy. Taking vitamin B and zinc are fine according to him, but he kept stressing the absolute avoidance of vitamin C supplements and multivitamins. I wonder if this will be helpful for other rosaceans. I noticed for years that vitamin C and multivits made me a lot redder and I never used them long term therefore. But perhaps there are more rosaceans here who have an underlying auto-immune problem that is adding to the rosacea symptoms (not sure if it is causing it, as the verdict is not out yet on that one). It might be an idea to reconsider if vitamin C and multivits are actually helping you or not. Note that this is just one opinion of one immunologist (Dr. Pfeiffer, D├╝sseldorf), but he seemed pretty knowledgeable and convincing and he had interesting background theories and blood test results to back it all up.

More specific info about my immune results

I visited Dr. Sebastian Pfeiffer (Standort: Labor Benrath).The outcome pointed towards systemic inflammation and auto-immune problems according to Pfeiffer, and he connected them with my rosacea and colitis (although doctors are careful to say this is a full fact, but he seemed pretty convinced they are all related). As also mentioned before, I had already been tested on ANA levels, antinuclear antibodies. They are elevated with me, 1/80, but this is not a very high score. Normal is zero up till 1/20, 1/40 is borderline and mild positive and from 1/80 up it's positive (numbers double, and can double up to in the thousand with some severe auto-immune diseases). However, I have been tested on this for the last 6 years, every other year, and my results went from 1/20 to 1/40 to 1/80 now and the seem to double every other year, which is not a good pattern.

I was tested for several things:

Allergy: IgE (normal with me) -Entz├╝ndungsmarker (Tumor-Nekrose-Faktor alpha) -Interleukkin-6, 2 and 10
Hematologie: Leukozyten, erythrozyten, Hemaglobin, Hematokrit, MCV, MCH, MCHC trombozyten, neutrophile, Lymphozyten, Eosinophile, Basophile, Monozyten.
Immunologie: CD8+CD11ah, Akuter aktivierungsmarker (CD8+HLA-DR+), chron. Aktivierungsmarker (CD8+CD28+), Chron. Aktivierungsmarker (CD8+ CD57+), Regulatorische T-Zellen (Regulatoric T-cells, these are important), zirkulierendes IgA, IgG, IgM and C3. Immunglobulin G, IgG1, 2, 3 and 4. Immunglobulin M and A.
Infektionsserologie: EBV-DNA Viruslast.
Klinische Chemie: C3-Komplement, C4 and C1 Komplement and C3-Fragmente.
Kl. Chemie-Sonstige: Ferritin, Transferrin-Rezeptor. 25-Vitamin D3 -Lymphozyten-Subpopulation: Leukozyten (absolut), Lymphozyten (absolut), Lymphozyten (relativ), Granulozyten (relativ), Monozyten (absolut), Monozyten (relativ), T-Lymphozyten (CD3+) relativ T-lymphozyten (CD3+) absolut, T-Helfer (Helper) (CD4+) relativ, T-Helfer (CD4+) absolut, Zytotox. T-Zellen (CD8+) absolut, Zytotox. T-Zellen (CD8+) relativ, CD4/CD8 Ratio, B-Lymphozyten (CD19+) relativ, B-Lymphozyten (CD19+) absolut. Nat. Killerzellen (CD16+/CD56+) relativ, Nat. Killerzellen (CD16+/CD56+) absolut.

Abnormal with me were: Basophile, regulatoric T-cells, C1 Komplement, Vitamin D, Absolute Monozyten, T-Helper (CD4+), Zytotox T-Cells (CD8+), B-Lymphozyten (CD19+).
Regulatory T-cells are good to regulate pro-inflammatory auto-immune substances the doc said and the most basic things you can do for this is to take omega 3 supplements and need to have your vitamin D levels at sufficient levels (54-90 ng/ml).

In general: "Autoimmune diseases are thought to be immune reaction to self-antigens due to defects in T and/or B cell selection or regulation. T cells and B cells recognize self or foreign peptides presented on the cell surface by a major histocompatibility complex molecule, referred to as human leukocyte antigens (HLA). Autoimmunity may occur in a genetically susceptible individual if a self-antigen is inadvertently targeted by a T or B cell when environmental or other factors trigger a break in self-tolerance. Many models of autoimmune disease pathogenesis invoke a role for CD4 T cells, a subset of T cells recognizing peptides presented by HLA class II molecules. Most autoimmune diseases are associated with one or more polymorphic HLA class II genes." (LINK)

My main test outcomes:  
My C1 inhibitor value is too high (61 where it should be below 40). From what I could find about this, this C1 inhibitor is related to auto immune activity and inflammation and this number would indicate the presence of inflammation in the body. But low levels of it are sooner associated with auto immune conditions as lupus of SLE than high levels, which are connected with arthritis (which I have in my knees). (Info, info)

B-Lymphozyten (CD19+) are high. From what I understand this is both connected to certain cancers and CD19 has also been implicated in autoimmune diseases and may be a useful treatment target. "Increased expression of CD19 also correlated with increased levels of endogenous anti-DNA Abs and rheumatoid factor. These results indicate that up-regulated expression of CD19 is functionally important for B cell development and that CD19 establishes signaling thresholds that regulate the generation of B-1 lymphocytes as well as the development of autoantibodies." (source, info)

Regulatoric T cells are high (19,52 % where they should be in the range of 4,98 - 9,52).
CD4 cells are borderline high.

Monocytes (absolute) were high, 0,82 (normal range ,0 - 0,5). Examples of processes that can increase a monocyte count include:chronic inflammation : stress response : hyperadrenocorticism : immune-mediated disease : infectious mononucleosis : pyogranulomatous disease :necrosis: red cell regeneration : Viral Fever. (Source)

Cytotoxic T-cells (CD8+) relative were low, 17 % (20 - 40 normal). "Essentially, suppressor T cells help regulate the T cells and are the main reason people don't develop autoimmune diseases. T cells, if left unchecked, would attack the the individual's own body (hence the term auto, meaning self, and immune). There are two main types of T cells, CD4 and CD8. CD8 T cells are also known as killer T cells or cytotoxic T cells. Though this name sounds threatening, these are very important in preventing illness. These CD8 T cells kill infected and damaged cells, which is obviously beneficial and necessary. I'm not quite sure what it would mean for the CD8 suppressor T cell count being low would mean. My educated guess would be that these normally helpful T cells are over active in your son's body and are causing these symptoms." (Source)
"Researchers have reported conflicting findings regarding a possible link between chronic fatigue and low CD8 suppressor cell count."(source)

"Specific CD8 T cell-mediated cell lysis is the critical effector mechanism against cells infected with viruses. Most viral infections are cleared successfully by the immune system. However, during infections with the family of herpesviruses, CD8 T cells do not succeed in eliminating the viruses completely from the host. A balance between CD8 effector T cells and the persistent viral infection seems to be established for the entire life of an individual.In addition to their classic role in the killing of infected cells CD8 T cells play a role in the regulation and differentiation of CD4 T cells." (Source)

My 25-vitamine D3 was very very low, 11,7 ng / ml where it has to be around 54 at least.
What bothers me, is that I already have some autoimmune conditions; Raynaud's, colitis, arthritis and rosacea. My ear cartilage is inflamed a lot and I got parts of it removed 3 times the last years to control it. I have the blood results for lupus according to my dermatologists, but not any active symptoms yet. Luckily. (More info on this). 

UPDATE, on lupus testing:

I have an ANA of 1:80 these days, which is not high enough to suspect lupus according to my immunologist. I only had the ANA test and someone in one of the rosacea online groups knows a lot about this type of testing, and gave me this great advise. I will definitely ask my doctor about more testing in the future, as I have other auto immune diseases and all round feel tired and sick a lot.

"There is the ENA antigen group which you can google. I am positive for the ssA and the ssB which could be related to Lupus or Sjogrens as well as four other antibodies.. if you had the inflammatory ones you probably had C reactive protein, Sed rate, ... there is DsDNA antibody, then there are your Complements 3 and 4... and all your Immunoglobulins., google all those.. maybe you had some of those already.. it gives a pretty good picture of things but may not necessarily show a specific AID"

How is lupus diagnosed?

The specific skin forms of lupus erythematosus have a characteristic appearance. To confirm the diagnosis, your doctor can perform a skin biopt of the affected skin. Examination of a small sample of this skin under the microscope can allow a more definite diagnosis as the microscopic tissue changes are characteristic. In addition, a small sample may be obtained for an immunofluorescence test. Also, Lupus erythematosus is a condition in which there is antibody production to self-tissues, and these may be detected in the skin with this test. 97 percent of those with lupus will have a positive antinuclear antibody test (ANA). It’s very common to get somewhat different results at different labs. However, if a person has active lupus, the ANA will likely be positive at most laboratories most of the time. Other autoantibodies will also be present. Usually, your doctor will first request a complete blood count (CBC). Your blood is made up of red blood cells (RBCs), white blood cells (WBCs), platelets and serum. The complete blood count measures the levels of each. In cases of lupus, these blood tests may reveal low numbers. (Source). Other blood tests can be ordered for Antibodies to double-stranded DNA (anti-dsDNA), Antibodies to histone, Antibodies to phospholipids (aPLs), Antibodies to Ro/SS-A and La/SS-B (Ro and La are the names of proteins in the cell nucleus), Antibodies to Sm and RNP. Here all these tests and their function are further and more detailed explained.


  1. I have been reading more about this topic and found some reports and findings about pregnancy triggering some auto immune illnesses:



    The fetal cells will remain in the body and bone marrow of the mother after birth and they can trigger auto immune disease as they body wants to attack these foreign cells. Of course only a small margin of women develop this problem. Strangely enough, miscarriage or abortion seems to lower the risk of developing auto immune diseases. The researchers conjectured that early loss of a fetus may allow more stem or similarly potent cells to enter the blood of these women, cell types more likely to prove beneficial than ones from later in fetal development. Previous lab work supports this notion. I had a few early losses and my skin has improved somewhat, if anything.

    I keep pondering over and over about the whole pregnancy or not question. I have been so bad though, so horribly debilitated by the non stop flushing, burning and swelling that I fear I won't be able to cope if it gets that bad once more. I couldn't sleep, I was having a constant feeling of my skin being severely burned and nothing seemed to calm it down. I fear I will pass this misery on to an innocent child and I fear becoming like I was in 2005 and the years before. One big mess. But yet, every single stupid baby advertisement on the tele will make me cringe and sends me right back into doubts. or every new pregnancy announcement from friends. Or every cute baby in the street. RIght now I read every eveing on forums about mums hating motherhood and hating the Motherhood Delusion. It helps for the time I am reading :/

  2. Hello! In your blog post did you use the data from any studies or these are totally your exclusive ideas? Can't wait to see your reply.

    1. Hey Freddie, I usually combine the two. Half of the blog is just personal experience and opinions, the other is backed up with the scientific info I found over the years and there are usually links when I used the information from someone else. Basic common sense info that isn´t someones real personal research (e.g. ´the world is round´, not quoting Ferdinand Magellan or whoever first stated this as a fact) isn´t always given footnotes or links.
      Hope this helps and thanks for the feed back,
      best wishes Nat


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