Rosacea and relationships, the score so far..

I don't think any normal, relaxed, problem solving partner will initially see rosacea like an impediment for a normal, exciting even relationship. No one seemed to with me at least, initially. Because why would rosy (read: red, burning) cheeks be anything more than an inconvenience? And what guy doesn't like the challenge to look after a girl he likes, when she feels a little bit off or sick? But it can bring a multi spectral challenge to the table. Or well, that was my experience at least. 



1998 - 2001

When my rosacea hit I was 19 and in a sort of serious first time relationship with a nice guy. He was well educated, slightly older than me and we went on travels a lot. We also went out to dinners a few times a week and to a lot of parties. I just started at university and everything seemed great. I noticed that he was really fond of me and proud as well. He commented me a lot on my looks, but more so we shared a real passion for travels, study and for endless discussions. It was a good time. When I started to get unexplained burning and flushing, and all the troubles that I described in the first posts began, he tried to be helpful and flexible. He felt for me and I could see that he felt helpless most of the time. I could sleep with the window open at night, but he did moan about it a bit with time and wanted to sleep in separate beds, with extra blankets. He initially went with me to health shops to look for 'allergy' free foods, but that soon became a bit of a bore and a hassle. I never drank much, but even one glass of white wine would tip my flushing off the scale now. So I started to avoid that as well. The restaurants we went to came more or less under scrutiny. Spices were a problem and because I had no clue what was going on with my skin, I just wanted to avoid any allergy related food item all together. No more tomatoes, garlic, spices and cheese for me. I went from bubbly and cheerful and relatively care free to the worrying type who was occupied with solving the riddle about the red face and skin rashes most of all. More than focusing on studies even. Anyone here familiar with rosacea and flares might know that the triggers can be anywhere; sun, heat, perfumes, chemicals, food items, stress, too cold/too hot, emotions. It's overwhelming. I hád to solve this and my general interest narrowed down because of that as well. I liked to talk about it a lot and got anxious over it. Not only because my skin looked red but far more so because it felt on fire. But there were also periods when I felt good again. When I avoided my triggers for instance. A recipe for manic obsession, back in those early days, these constant fluctuations and uncertainty about what triggered them exactly.

Needless to say perhaps that all this had some effect on the relationship. Before, I used to care about other, more interesting things like my studies, movies, books, music, the Middle East problems, religion or the American elections, you name it basically, but all that was of lesser importance now. And soon I realized that to him, I was perhaps becoming a bit like music record that got stuck somewhere half ways, and he politely kept listening but I didn't really reach him anymore. I could almost see him thinking: where did the old her go and what the heck... Of course that made me feel even worse. Some days he would come over and take me on a car ride through the countryside. Listening to music, talking a bit, just, driving in the middle of nowhere. Simple but a lot of fun, very relaxing. We still traveled a lot or went out for meals. But it was not working out after 4 years. He is a restless type who was always traveling or working, he lived in different cities at some point. By the time we called it quits he had already lived in Paris for 6 months and was then living in Amsterdam, about 300 km away from my home town. I at least was doing a bit better again by then, rebuilt my life a bit and saw it was going nowhere steady with him either, neither from my side. Despite the great fondness and all that. We're still amicable.

 

2002 - 2004 

During holiday Turkey

So I was single again by 2001. I tried to keep myself occupied with work and studies and friends. However, I started to go through what seemed a period of slight remission of rosacea. Still thought I was suffering from some mystery allergy by then, when I met another man about a year later. He was the opposite of my ex; head over heels, full on energy and dedication. No weekend meetings or living separate lives with him. I had a brilliant year, where I threw all diets out of the window and enjoyed concerts, pub time, dinners and just uncomplicated starting up time. He took me everywhere, introduced me to funny friends from Ireland and England and Scotland, with a positive care free attitude. He spoke the world of me. Then, a year later, we went on a holiday to Turkey. Being a control freak by now when it came to my skin, I checked with a doctor friend about vaccinations. Bf said no, don't take them, you don't need them. Doctor friend said: yep, better be safe than sorry. Boy did I regret going with his advice. And not only because bf was pretty p*ssed off with me for ignoring his advice. Soon after taking the Hepatitis A. vaccination my face started to burn again. I had already told him about my skin struggles in the years before and how I was scared of even taking the pill, to mess things up again. He was sympathetic but had no clue basically what I was on about. And I couldn't blame him for that either. Who would, without being in such a situation themselves? So after the jab I started to feel the flushing and burning coming back again. But the new wave of rosacea troubles ignited in fact from a chemical cocktail of several factors. Firstly the vaccination jab (perhaps triggering some immune response or something), secondly a coil I had fitted. I wanted a hormone free one, as I expected hormone changes to be a trigger too, especially synthetic progesterone. In the hospital they perhaps had to get rid of their stash of Mirena (hormone) coils, or hit their tax for them or something, but the Ob/Gyn managed to talk me out of my intended copper coil and into getting the Mirena one. Promises were even made that would be fine and that none of the hormones of this coil would enter my blood stream (wrong!) but instead only work locally in the uterus, and that this coil would not give me hormone-related skin problems (wrong) and it wouldn't hurt either (ouch!). Within a week I had acne and facial flushing right back where I left it a year before. I had the Mirena replaced by a copper one a few weeks later but the fire was already reignited. Then, the holiday itself was a huge problem, as there was a heat wave in Turkey and temperatures were soaring over 50 C. (122 F.). Even the Turks themselves stayed inside all day. Of course, being silly tourists who paid their holiday savings for the trip, we couldn't stay indoors all day (although I wanted to hide in the refrigerator for the rest of the week if I could) and we went out anyway. I was already spotty and rashy and feeling hot in the face when embarking on the trip, but I came back in red hot agony. I mean, we also had a good time, we did fun things, I forced myself to stop worrying and not ruin his holiday in the process. But nevertheless I had this worrying feeling that things were getting worse again with the skin issue I had no name for yet by then. Bf didn't understand why I was so stressed out. I think in hindsight that the amount of stress I had during the holiday (practically all self induced) sprung from me being able to foresee that this new skin flare-up wouldn't just subside again like it had before... Stress just messes up my immune system and makes me flare ten times worse. It wasn't mere restlessness, it was the type of stress that left me shaking almost, for weeks after we returned from our holiday. I called or visited my sister often for some words of support. She was the only one, apart from my dad, who took me seriously and who I could always talk to. She did a studies to become a beautician and she would clinically treat the paps I had by now, and hear me out about my worries.

When we were back home, things didn't improve, and got worse instead. I was still stressed, bf was getting a bit annoyed by now, understandably, and said that he didn't recognize his girlfriend in me anymore. What was I on about? Why was I wallowing in this? It didn't look that bad. The moisturizer I used to use (Biotherm sensitive skin) started to burn and when I changed it into something milder from the health shop, things got even worse and I had bright red flushing about half of the time now. When my face was less red, it still felt very painful and tight and like I had acid poured on it. I visited the GP and she said I looked healthy and that there are many people with rosy cheeks, and to live with it. I was upset, tried to explain how it wasn't the look of it that bothered me so much, but the constant burning and throbbing and sensation of intense heat in my face. She brushed it off and I sobbed a bit, as my dad sat next to me, also unable to get through to her. I tried all sorts of creams, thinking now that I would be back to calm skin again as soon as I found the right moisturizer. At some point my mum thought I was only making it worse by all the experimenting. I literally went to every make-up shop in town for tests for moisturizers, explaining that I needed something as neutral as possible. Everything made me glow beyond cuteness. Going out to fun places became a nightmare, I brought cold packs with me to cool my face or even the small mini fans that bf bought for me. They made such noise that it seemed as if I was about to take off in a plane. All of that could have been funny, perhaps, but I was failing fairly miserably to be the same joyful person to others as before. It wasn't the way it looked at that point, if it ever even has been about that, it was the constant sensation of burning and the heat that every flush brought, and me wanting to go out and cool instead of being in a warm bar. Everyone sees you struggling, on top. It's visible that I have a red face, am uncomfortable about it and that felt like a huge pressure to me. Especially compared to my normal self, much more spontaneous and fun loving and upbeat. I thought that talking to people about it would help, but it didn't really.  Bf  went from caring to irritated and on edge. He would get really upset with me, saying I had to get myself together. When I varied my diet, or was acting erratic about one moment eating white beans every day, for instance, and a few weeks later radically stopping with eating white beans, he couldn't stand my constantly changing 'skin rules', fighting with me about how I constantly "changed the goal posts" and that I was obsessive and miserable to be around. Although he also helped where he could and said later that it just took some time for him to understand what was going on, and how he could help me get on with things. How to be supportive. That really changed for the better with time. And he never let me down, broke up with me or called it quits either. But at this point, early staged still, I was told by him there were a million things that would be worse and millions of people worse off and that I was totally obsessed. Which was all true. But nothing about that made it easier to deal with the reality of a burned up face. Unfortunately our first great year of carefree young adult-living had changed into me being a nervous wreck, avoiding social gatherings and eating very restricted. Misery.

But bf was very dedicated to support me and patch me up. I had to stop looking in the mirror. Also, by focusing on it so much, I was only making matters worse he felt. I should do yoga and get some control over my mind, because then I could control the pain too. Perhaps I could meditate the pain away? I could smoke weed and perhaps that would help me relax and take the pain away? I didn't feel like that at all and when I did smoke it, just to show him that I was taking his advice seriously, I flushed violently all night from it. I know now what he was saying and what he meant and that he was even right in some ways. From his perspective, this wasn't such a big deal. But others usually can't feel what sort of pain you go through. And then the discussion quickly gets narrowed down to the way it looks. I can say now that this entire relationship ended up in a very negative one, unfortunately, not last because I was miserable myself. Looking back, you see where it all went wrong from my point of view (I have kept diaries since the age of 8), but at the time I was clinging onto the little 'security' I thought I had with my relationship. There were many good things too, but I was mentally in survival mode, dealing with a burning flushed face every day and struggling to handle the cooling and stress and the severe burning pain. There was not much space left to be an engaging girlfriend :( And he could get mean when too frustrated with me and the whole situation. For instance, when we met I was 50 kg and my hair had my natural brown colour. By 2007 I had started taking anti flushing medication (and my life quality had gone up a lot!) but I had also gained some visible amount of weight and I had dyed my hair blonde/reddish for my mothers marriage. Without asking him first! Didn't I know that he hates blonde? And yet I still went on and dyed my hair. And refused to dye it back to brown. He fancied slim and brunette and now he had a "fat blonde", who was too "lazy" to get her butt to the gym, instead sat in the car to go everywhere. Mind you, I flushed all the time and had a life behind a ventilator, yet still managing to go to an office job at the time and leading a more or less normal life again. I wasn't fat either, I had a normal figure instead of super thin now. It hurt me to hear such things. Also I was told that my rosacea made hís life miserable, with all the rules and the no alcohol drinking by me ("boring!") and all the other restrictions. My little rosacea world was pathetic and restrictive and my emotional ups and downs were also grating. He said that him drinking all weekends was because of me; to escape this rosacea hell at home. At this moment in time I was actually in a good mood and happy with the effects of the medication I had finally found through Professor Chu to take the absolute worst off this flushing. I was also supposed to just take in his advise and not talk back with contra arguments. ("Very un-ladylike"). In a life in constant turmoil over this ridiculous rosacea flushing, I wanted to keep everything else stable. Even though the last thing this relationship was in the end, was stable. But over time bf started to see how much physical pain I had from my rosacea and that his way of approaching it resulted only in us fighting constantly and drifting apart. He explained that his anger came from feeling helpless. That he wanted to help but couldn't. And me being so strict with everything, only to change my own rules over time, made him feel frustrated. Which I understood! It was a madhouse, for me too. He spent more time alone with his friends, I withdrew myself more, he drank and smoked more. We got things back on track by opening up about the real reasons underneath the fights. We had date nights or weekends away (dragging ventilators and cold packs along), he would be the one reminding waiters in restaurants that I really didn't want pepper on my dish. He got much more sweet and understanding and supportive with time. Luckily. But it was hard while we were in the midst of the storm. But he stuck it out, which I still appreciate about him today.

2004 - early 2005

Bf. 3 was a very sour chapter. We had been friends for a while, although vague friends. I knew him through my best friend and we mainly chatted about art, music and general things. He sent me countless emails, always intelligent and interesting and sincere seeming, and he made it clear all that time that he was very interested and curious about me. Or something like that. I kept the boat off mostly however. Besides, he was well educated, a big guy, and although a bit cool in his manners, he was witty and sharp, but I felt he was too 'middle of the road decent' for me, if that makes sense. I'm not really ticking those boxes, as a partner. It didn't feel like a right match. And I was also worried that in reality, despite him claiming otherwise now, he wouldn't like to have to deal with a person like me, always bend down under my skin disease. But he stayed in contact, we went to an exhibition once, I confided in him about my skin problems and he listened and said serious, sensible things about it. He wanted us to give it a go but I kept it off, saying I had a relationship and that I had too many health issues besides that, and we had no more contact for a year. When bf. 2 and I broke up, I saw him again by surprise at a festival. He later sent me an email with the invitation to come to his town for a day out. I again told him how my skin problem was a massive issue still and how I didn't feel confident to come over. He called and listened for a long time and told me that he realized all this and that I shouldn't fill things in for him and trust him. How did I know that he wouldn't be caring and patient and loving or couldn't cope with it? He would help and console me and all that, if only I gave it a chance. After some visits, I decided to give things a try. To cut the details and go fast forward; after a good start, things became strained soon enough. I couldn't really fit into his idea of a gf. I felt that as soon as the novelty wore off for him, the rosacea did become a problem, again. He didn't like how I wanted the window open, even during the winter. Although he really courted me for some time, he started to feel uneasy when we went somewhere together and I brought my cold packs. Or didn't eat normally, like the rest of the group. He probably also didn't like that I looked like a lobster and went all silent in groups as a result. From my part, I started to feel locked up and down when around him. In December of 2004 my middle sister, the one with the endless patience and care for me and my skin, died very unexpectedly. We were all in shock. January of 2005 I had the IPL with Dr. Patterson that went so terribly wrong, as written down before. Bf. 3 was even less supportive and caring after that. To cut the crap, it didn't work out, not a great match nor a great experience. Luckily ever since I had much better experiences with relationships and men but those are for another, happier chapter. I wrote some things about one of the rosacea forums too at the time, where the relationship was mentioned in passing. One entry:

Feb 22, 2005

"Help! 

Rosacea is not contagious right?! Boyfriend starts having rosacea signs after 6 months with me.. Nasty but inevitable warmth-experiment coming! Something weird and concerning has happened. My boyfriend has been extremely considerate and sweet with me and my, pretty extreme, rosacea-needs the last 6 months. Although he is half Indonesian and used to `normal' temperatures (20 degrees and higher) he has not made a problem sitting in the cold during the day with an extra sweater and sleeping in the cold with an extra blanket. BUT: I started to see recently that his normal tinted, great looking skin started to get red blushes in the morning. And since it is very cold here the last months he has blushes (!) when were in normal temperatures with others as well. He just called me from work, were people commented him about his unusual rosy cheeks and said that he doesn't like this development. He thinks that the extreme temperature changes are due to this: his blood vessels are overcompensating while in warm environments after being used to the cold in his house now I'm here. He doubted that rosacea is contagious and that he might have an bacterial form of it through me, but yesterday he said his cheeks felt a bit sore as well. I am terrified of course! Just this morning I was daydreaming before getting out of bed how wonderful this guy is through this very rough skin times for me and how wonderful it is I can sit here normally, watching a movie with him etc. without getting completely overheated.  His plan: slowly increasing temperatures to more normal values. At least he has to find out if his rosy cheeks will go away for him in normal and more stable temperatures and he also thinks it might be good for me. I warned him that too high temperatures are just no option since my rosacea is already so advanced and my vessels are so damaged already. HELP! I'm scared of what is coming: not only for my own skin, his health but also for possible problems between us! Has anybody else got experience with this?? N."

On a side note: For all the male rosaceans here there is a shimmer of hope when it comes to dating: "Most people would expect a ruddy face to turn off the opposite sex, but a new study claims women actually find redness sexy. According to researchers at the University of Nottingham, rosey facial skin in male monkeys, birds and fish has long been associated with mate selection and dominance - but they've now discovered red-faced men, such as Manchester United manager Sir Alex Ferguson, are equally appealing to potential partners. 'We have shown that increased redness enhances the appearance of dominance, aggression and attractiveness in men's faces viewed by female participants,' said co-author Ian D. Stephen." Etc

Ok, after some reading it turns out red is not good after all: 

"He said a male face which is red is attractive to women because it suggests good health and fitness. However, the findings show excessive redness makes men appear angry and aggressive in the eyes of women.'Very high levels of redness increase perceived aggression to the detriment of attractiveness,' Mr Stephen said. 'These differences may reflect a trade-off between the benefits to females of choosing a healthy, dominant male and the costs of associating with an aggressive partner.' In the study, women were allowed to manipulate the facial colour of computer pictures of men to make them as attractive, dominant or aggressive as possible, and most increased the redness to boost these qualities. As the face gets redder it is increasingly attractive to women because it is an indication of testosterone, good health and fitness, as there is more oxygen in the blood. But it can soon tip over in to aggression and, in extreme cases, anger."

Here are some rosacea forum topics about relationships and dealing with rosacea:
*Rosacea and relationships
*Rosacea and dating 
*Dating/relationships and rosacea 
*Rosacea and relationships, advice?
*Seb derm and dating 
*Dating for rosaceans

Here are some interesting articles on having relationships while suffering from chronic health conditions and/or depression:
*Evan Marc Katz on finding love if you are depressed

*Meredith Goldstein gives advice on dating when you have a chronic illness
Most links also have a good deal of readers comments below them, which I usually find as interesting as the central advice. Please scroll down this thread for links to forum topics on rosacea and relationships and dating.

And some nice looking men..

 

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. Aside from doing blood tests, dr. P. also spent 1,5 hours chatting 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 bac, that I have a slightly overactive immune response with inflammation symptoms. I added the test results below.

What more things did Dr. P. find, that are interesting for my rosacea?

The extensive blood work tests that Dr P. 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 P. mentioned and considers important to combat the immune related inflammation, is omega 3. 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 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, 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. P. The outcome pointed towards systemic inflammation and auto-immune problems according to this professor, 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) -Entzündungsmarker (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 an 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)

In other words: when you have an auto-immune disease, the defense system within our bodies attacks cells within our own body. Normally our immune system only attacks invaders; think of bacteria that entered your body through a skin wound, or a virus that you inhaled through your nose and that is trying to spread within your body. But with an auto-immune disease, this process is disturbed and turned around to attack the body itself, thinking it is a threat. T- and B-cells are involved with this auto-immune process. Normally these cells can determine of they are dealing with cells of the body itself (and thus don't attack) or foreign cells (attack! - which results in inflammation). They do this with the help of a molecule called human leukocyte antigens (HLA). But there is a miscommunication going on within the bodies of people with auto-immune diseases. One type of T-cell that is often found to be involved in auto-immune disease is called CD4 T cells. So when doctors are looking for evidence whether or not someone has an auto-immune disease, they tend to do specific blood tests, looking for:

*auto-antibodies (ANA). They are proteins that your immune system makes to fight off bacteria, viruses, and other germs. When your immune system mistakes parts of your own body for foreign invaders, it releases special antibodies, called “autoantibodies” (ANAs) that attack your cells and tissues. Autoantibodies can damage your joints, skin, muscles, and other parts of your body and create inflammation. If you have an auto-immune disease, you often have a positive blood test for ANA's and depending on what auto-immune disease you have, they will also show a marked and specific pattern under the microscope.

*A doctor will also do a blood test looking for immunoglobulin levels in the blood serum (IgG, IgA and IgM levels). Antibodies are proteins made by the immune system to fight antigens, such as bacteria, viruses, and toxins. The body makes different immunoglobulins to combat different antigens. When the body mistakenly makes antibodies against itself, treating healthy organs and tissues like foreign invaders, such an autoimmune disease will show in your Immunoglobulin blood markers. The five subclasses of antibodies are: Immunoglobulin A (IgA), which is found in high concentrations in the mucous membranes, particularly those lining the respiratory passages and gastro-intestinal tract, as well as in saliva and tears. Immunoglobulin G (IgG), the most abundant type of antibody, is found in all body fluids and protects against bacterial and viral infections. Immunoglobulin M (IgM), which is found mainly in the blood and lymph fluid, is the first antibody to be made by the body to fight a new infection. Immunoglobulin E (IgE), which is associated mainly with allergic reactions (when the immune system overreacts to environmental antigens such as pollen or pet dander). It is found in the lungs, skin, and mucous membranes. Immunoglobulin D (IgD), which exists in small amounts in the blood, is the least understood antibody. Once an antibody is produced against a specific antigen, the next time that antigen enters the body, the immune system "remembers" its response and produces more of the same antibodies. In that way, checking for the presence of specific immunoglobulins in the blood can be helpful in diagnosing or ruling out infections or certain other illnesses. IgA, IgG, and IgM are often measured together. That way, they can give doctors important information about immune system functioning, especially relating to infection or autoimmune disease.

*A doctor may test Cellular (T-Cell) Immunity with a blood test. The doctor will test to see the numbers of different types of T-cells and evaluate the function of these cells. He or she will especially look for decreased or absent T-cells is the blood. If this is the case, it often also means a reduction in the total number of lymphocytes in the blood. The measurement of the number of T-cells is often accompanied by cell culture studies that evaluate T-cell function. This is done by measuring the ability of the T-cells to respond to different types of stimuli including mitogens (such as phytohemaglutinin [PHA]) and antigens (such as tetanus toxoid, candida antigen). The T-cell response to these various stimuli can be measured by observing whether the T-cells divide and grow (called proliferation) and/or whether they produce various chemicals called cytokines (such as interferon).

*A doctor may test for Neutrophils with a blood test. Certain diseases are associated with abnormalities in the structure of the neutrophil, or the way it looks under the microscope. An elevated IgE level may also suggest the diagnosis of specific auto-immune diseases.

*A doctor may test for Complement with a blood test and test for deficiencies in the complement system.

*Laboratory Tests of Innate Immunity, measuring the function of the various elements of innate immunity. This includes determining the number and activity of lymphocytes such as natural killer cells, as well as the function of various cell surface receptors such as the toll-like receptors.

My main test outcomes:  

 My C1 inhibitor value is too high (61 where it should be below 40). My professor wrote: "Slight increase C1-complement with me indicating activation of the unspecified immune system". C1 is linked to autoimmune diseases, such as systemic lupus erythematosus. And increased levels can indicate the presence of inflammation in the body. C1-inhibitor levels rise ~2-fold during inflammation. High C1-INH levels can in general also be caused by an ongoing infection. But low levels are sooner associated with autoimmune conditions like lupus of SLE than high levels, which are connected with arthritis (which I have in my knees. (Info, info). 

B-Lymphozyten (CD19+) (a type of immune system cell) are slightly high in my test results. 0,51 where it should be below 0,4. My professor wrote about my level: "Expansion of the B-cell population indicating activation of the unspecified immune system." From what I understand this is both connected to certain cancers and CD19 has also been implicated in auto-immune diseases and may be a useful treatment target. CD19 CAR T cells target autoreactive B cells that trigger autoimmune diseases including systemic lupus erythematosus (SLE), idiopathic inflammatory myositis and systemic sclerosis. High numbers of the absolute B-Cells CD19+ can be sign of general B-cell lymphocytes stimulation: current virus infection (EBV-Early Infection), recent infection with bacteria, autoimmune disease or lymphadenopathy. "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). Regulatory T cells are essential for maintaining peripheral tolerance, preventing autoimmune diseases and limiting chronic inflammatory diseases. However, they also limit beneficial responses by suppressing sterilizing immunity and limiting anti-tumour immunity. The regulatory T cells (Treg cells) are a subpopulation of T cells that modulate the immune system, maintain tolerance to self-antigens, and prevent autoimmune disease. Treg cells are immunosuppressive and generally suppress or downregulate induction and proliferation of effector T cells. While the immunosuppressive function of regulatory T cells prevents the development of autoimmune disease, it is not desirable during immune responses to infectious microorganisms. They suppress the immune system, thus limiting target cells and reducing inflammation. There is some evidence that Treg cells may be dysfunctional and driving neuroinflammation in amyotrophic lateral sclerosis due to lower expression of FOXP3. When T cells are overworked, people can be more susceptible to diseases of an overactive immune response, such as lymphomas, leukemia, and autoimmune disorders. But low T cells can increase the risk of developing cancers. 

CD4 cells are borderline high. A higher CD4 cell number indicates a stronger immune system. CD4+ T cells are critical to the development of autoimmune disorders. T-cell inhibitors help orchestrate the complexities of adaptive immunity. Dysregulation can lead to: increased T-cell activity, producing autoimmunity, hypersensitivity, and transplant rejection; or reduced tumor-specific T-cell activity producing malignant cell proliferation.

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 or viral Fever. (Source)

Cytotoxic T-cells (CD8+) is relatively low, 17 (where a level of 20 - 40 is 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. CD8+ T-cell deficiency is a feature of many chronic autoimmune diseases, including multiple sclerosis, rheumatoid arthritis, systemic lupus erythematosus, Sjögren's syndrome and systemic sclerosis.

IgG3 antibodies are high which is a pro-inflammatory type of antibody. IgG3 is an immunoglobulin known to promote inflammation.

'High levels of IgG may mean you have an infection or an inflammatory or autoimmune disease that involves your central nervous system.' And my IgG1 levels are in the normal but high range. Elevated IgG levels can be seen in chronic active infection or inflammation, or in association with plasma cell disorders.

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, more 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 the 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.



Update: February 13th 2019
I had more blood/urine tests done by an immunologist/rheumatologist recently. To rule out again underlying diseases that could fir eup my skin burning and flushing. WELL, I got my results back. Doctor would call during the day and I literally sat next to my phone from 8:30 AM... Nervous. By 3 PM still no call and I had checked the reception and battery life pretty much every ten minutes in between. Luckily by 5:30 I got a call. It went like this:
Doctor: "I'm calling about the test results. They are all in by now, and there are actually no clear abnormalities found."
Me: "Ahh hmm, yeh I already worried about that."
D. "Yes. We have checked your general blood count and found no real abnormalities. Inflammatory markers were found, they were visible but around the high normal value. We looked for specific auto-immune diseases and they don't really present themselves in these blood results.
M. "Ok.."
D. "After our first appointment and the triggers and symptoms you described, I also looked closely to histamine levels. Histamine is a substance in the body that can lead to blood vessel dilation. And histamine is present in a number of the food items you described as being triggers for your flushing and red skin burning. For instance in canned tuna, strawberries, white wine. So we also checked urine for high concentrations of histamine. But we haven't found that."
M."I do use a high dose of antihistamine medication, could that have influenced the outcome slightly, in theory?"
D. "Not really, in principle an antihistamine will block the receptors on certain cells, in a way that makes them less sensitive for the histamine, but the histamine itself does stay in the body."
M. "So you would have been able to measure it. Ok.."
D. "Yes and it does fall within normal values. And the same for specific substances that are released in the body, mast cells. They can also cause blood vessel dilation and they were also within normal levels."
M. "And the ANA blood levels?"
D. "We did an ANA screening, which has the advantage that it is super sensitive, and picks up on everything. Which is at the same time a disadvantage, as it picks up on everything."
M. "So it can also give a false positive result?"
D. "Exactly. So your ANA was just slightly positive. In the first dilution phase it showed to be positive. So we have zoomed in on it and tried to find out what exactly it was positive for. And then we found that for all the next steps and specific testing, it was negative. "
M. "So no lupus or something; nothing with a specific speckled pattern or anything under the microscope."
D. "Exactly.  For lupus we looked specifically for particles that match with lupus, and that result was really zero. So no lupus. So on the one hand it is good we could exclude certain diseases, but on the other hand we still don't have a clear idea why you have this severe flushing problem."
M. "Yes it sounds like it really is all down to my blood vessels being over-reactive."
D. "Yes it seems that your blood vessels are overly sensitive and are reacting to minimal stimulants. And also that your face has a lot of blood vessels. Many smaller blood vessels also. And that seems to be at least part of the problem."
M. "Yes I understand. It has definitely worsened after that IPL treatment I had in 2005. There appeared many more blood vessels and redness all over my face afterwards, like the treatment caused new blood vessel formation and trauma or something."
D. "Yes that is very possible."
M. "Is there another specialism other than dermatology, that could be of any help with those blood vessels? Because I have pretty much hit a wall with dermatologists as they just don't know how to treat the facial flushing. Maybe a vascular specialist? Or are they more for diseases like general vasculitis etc?"

D. "Yes exactly, and it is not vasculitis. Yes I understand the question. I do think that dermatology is the most obvious specialism for this problem. But I have thought about two other options perhaps. We could have a look at the blood vessel formation in your finger, and specifically in the cuticle of your nail. To see if the blood vessels are normally formed and functioning and if there is a disturbance perhaps in the forming of those smaller blood vessels in the body. That may be a different place than your face, but it is possible we get some more information from it. As you do not want another biopsy taken from your facial skin you said. And secondly I am thinking of a connection with mastocytosis. Now is mastocytosis a syndrome that can also give flushing and redness as main symptom. In your case I don't think you have mastocytosis, that has been more or less ruled out by the blood research, but I am thinking about another thing. I have a strong feeling that these mast cells are playing an important role in your symptoms. Because for mastocytosis we are testing for too many mast cells in the body. But another option is that there aren't too many mast cells in your body, but that they are much too easily triggered.."
M. "Ah ok, they just don't function exactly as they should then. And does that mean it is more difficult to determine something like that through blood testing and instead I would need to try medication for this, to see if my symptoms go down then?"
D. "yes exactly. You are already using an antihistamine (Xyzal), which should help a little bit already. But we also know that it is not enough and through allergology we have ways to shut down these mast cells entirely."
M. "Oh that would be nice. To see what happens then."
D. Yes. So I think there may be some treatment options for mastocytosis which you haven't tried yet, which could perhaps improve your flushing. I am going to discuss this with an allergist who is specialized in this, to see if he can take you on as a patient to test this out and to ask if he finds it a good idea or not. I will call back when I know more."

So all in all, nothing really came out of it 😞 Only very mild positive ANA (auto immune) markers, but too low and non-specific for any other diagnosis; no patterns to indicate something like lupus. So a negative there. Also no histamine tested in urine and blood so no mastocytosis or rampant allergy issue. Only thing he can do is try to refer me to a specialist in allergies to try specific medication that calms down mast cells, and seeing then if that will improve my flushing problems. I don't have too many mast cells but it could be that the ones I have don't function as they should. Which is also what scientists found linked to rosacea flushing in general. The doc said that my high dose of regular histamine pills won't cut it, when/if this is the case, and that different, specific mast cell suppressors could make my flushing less severe perhaps. He will discuss it next week with a team meeting of different specialists and see if I can be seen by an allergy specialist and get those meds testing. That's it, nothing else going on. Just too many blood vessels, too many small blood vessels in the upper skin (thanks to botched IPL!!) and weak blood vessels that are hyper-reactive. Which is good news. But somehow I had hoped that something specific would have come up, with a specific treatment option to reduce all this flushing and burning hell. But this doctor had already warned in advance that the chances would be slim that anything would come out of these tests, as I've had them before, a long time ago but still, and this might just be one of those freak cases of rosacea. Am happy today that nothing came out, but was a bit disappointed yesterday. Who knows, maybe next stop at the allergist.. My friend wrote about it; "Honestly I hope you also see the good news here. You have a Dr really advocating for you and the hope of trying new meds and one who seems to really want to connect the dots. I found it very hopeful."

But I am expecting that I'll be stuck for another twenty years with this skin flushing and burning problem. The constant need to cool with a fan. The 1000+ triggers. BLEH! Really, my face never feels like nothing.. Like it should be. Its always either burning, or tingling, or tight, or about to start burning, or burning hot. Absolutely dreadful! Then the swelling of my face on top. I don't even care about the redness nowadays. Just the pain it gives me. I got this misery at age 19 and fast forward 20 years... and it still isn't curable! Not even well treatable if you flush and burn. Just disheartening. Not enough money and resources go to research I think... Whatever we have seen in the past two decades came from pharmaceutical companies who took some already existing medication for glaucoma in the eye and such and turned it into treatments. Which have a ton of side effects that make them unacceptable for many. As some may know by now, my whole perspective on life has changed. The less fuss the better. I'm lucky in a way that I've always been quite solitary and like things you do alone, like reading and listening music, movies, writing and all that sort of stuff. I spend so much time indoor, especially when the sun is out. I'd not have handled this lifestyle pre-rosacea though. I was always enjoying going out, dancing, traveling. Nowadays I'm keeping more to myself (and trusted circle of friends and loved ones). I shun most social occasions. We take for granted so much when life is going well. Nowadays, for me but also for some friends with similar debilitating rosacea, it is the simple pleasures that matter - walks, reading, listening to music, animals, hobbies, relationships. Everything slows down. But then again, out there in the real world get burn outs from being overworked. There is something good about this slow living too. Although I'm always working or walking or busy with stuff. If I don't do then I feel kind of low on energy. From doing nothing! If that makes sense. I feel lazy and unproductive then. You beforehand think the extra free time to just laze around is great, but I get energy somehow from doing all sorts of work and finishing it, which feels fulfilling. It's like working in a bubble zone where different laws of time apply. Must be a form of escapism. Unless people have this burning pain daily, they just don't understand, I found. I get so many comments about "it not looking all that bad", most of the time. But they cannot see how burned up and painful my skin is. Nerve pain doesn't light up on the skin, radioactively.