I try to give insight in my own life and dealings with rosacea. I also try to gather information that might be useful for everyone with rosacea, especially subtype 1 with burning, flushing and skin redness. I happen to be a bit unfortunate in that I have this condition for a long time already, and unlike many others, I haven't been able to get it into remission. I know it is more uplifting to read about someone who has beaten rosacea, but I like to write about the struggles that come for those who haven't achieved this. I also blabber here about everyday life topics. 
Aaaaghhhhrr..I had to change the whole lay-out, background and colours of this blog. I don't like changes so this was no fun. But it appears that half the visitors here use not a laptop, but a smartphone. I don't have one, so never really understood the criticism that the old font wasn't easy to read. It was perfectly readable on my laptop. But the light letters.. the coloured busy background... I was told. I borrowed my friends smartphone tonight and yeh.. I see the problem finally. (About 5 years too late probably). It is hard to read. On a small screen. So there you go, a changed look. Might take me half a year now to get used to. WARNING: I have to manually change every single posts colouring schemes, as what used to be written in light grey or light pink (standing out against the former dark background), now has become unreadable (oh the irony :D ), so I have been busy the past 5 hours changing the colours to fit with the new light background. But since most was done by hand and isn't following a specific base colour, I cannot quickly update it. So some posts are simply unreadable now. I'm working on it, next couple of days. I am still awaiting the large batch of test results from the immunologist/ rheumatologist. Will receive them on February 11th. In the meantime, Laser_cat from the Rosacea Forum advised me on some things. First, I have been tested for mastocytosis in the past (and they are looking for it again this time), which has to do with too many mast cells in the skin / body causing too much histamine to be produced. Histamine is a substance in the body that dilates blood vessels. It is involved with allergic reactions too. I am already avoiding foods that are high in histamine, because they make me so badly flushed. Some of those foods that are high in histamine are for instance fermented foods (sauerkraut to name something. but also old ripened cheeses), tomatoes, smoked meats or fish, canned fish, beans, nuts, vinegar, yogurt, spinach, eggplant, strawberries, cinnamon, most citrus fruits, alcohol and last but not least...... CHOCOLATE. Brbbrrrr... Read for more info on mastocytosis as a cause for face flushing this blog post of mine. So to test for mastocytosis, doctors usually look for tryptase in the blood. They can also carry out a biopsy, where a small skin sample is taken and checked for mast cells. But I won't have pieces of skin taken out of my retched rosacea face :) Had it done once, back in 2003 in hospital and nothing came out of the biopsy. So anyway, Laser_cat - who has bad flushing and burning of the face as well - said about this tryptase testing that her tryptase is always a little high too when tested, but not high enough to be worrisome. And that patients with erythromelalgia (another condition that can cause flushing and burning of the face, as well as hands and feet) also sometimes have elevated tryptase levels. Despite not having mastocytosis. She suggested that perhaps the elevated tryptase levels can be linked to neurogenic inflammation in fact. It is known that inflammation can affect all sorts of blood values. The same could be happening to ANA blood levels; antinuclear antibodies, which are often seen when people suffer from an auto-immune disease. Often ANA blood levels can be a bit elevated with patients who have an inflammatory disease, like rosacea. Mine are borderline positive too (1:80 last time, am waiting the new and updated test outcomes at the moment), and all the specialists I saw about it said the same; that in itself is not worrisome to them. Because these levels can fluctuate over time and a true positive value is much higher. But it does show antibodies being active, which can be linked to auto-immune conditions. Well, I have some haha. Not the types that raise ANA super high like a condition as Lupus does, but still.
But even patients with erythromelalgia apparently suspect mast cell and histamine issues sometimes, and can have their flushing improved quite a bit by taking antihistamine medication, such as zyrtec, zantac, benadryl, Xyzal (the one I use), as well as by following a low histamine diet. Laser_cat linked me to this research article, which describes how a man with erythromelalgia (EM) and small fiber neuropathy on his feet and hands, also had mastocytosis by biopsy. So an interesting link between masto and flushing and burning. Just like mastocytosis sometimes pops up in rosacea and feet EM. If you yourself flush a lot and have never been tested for mastocytosis or histamine overload, perhaps it is interesting to see if you can get tested for it. I am always on the lookout for ways to reduce inflammation, without wanting to take steroids of any type. I took diclofenac (NSAID) for several years but at some point developed heart cramps whenever I exercised and didn't want to keep taking them therefore. I also felt they stopped working and paradoxically might have made me more red eventually. I now heard about IVIG (Intravenous immunoglobulin), which means that you get intravenously (IV) provided with extra antibodies, which stay in your body for several weeks and help your body fight off a large variety of infections. Unlike steroids, you can do this treatment long term. IVIG has proven to be effective in the treatment of various autoimmune and inflammatory disorders, lowering inflammation in the body. So, considering that rosacea is also an inflammatory disease (and some forms of rosacea quite possibly being an auto-immune related issue), you would think that it could improve rosacea in theory as well. However, apart from being anti-inflammatory, IVIG also boosts your immune system. Which paradoxically can worsen auto-immune related inflammation again. Anyway, the person who tried it for rosacea flushing found IVIG had absolutely no effect on the rosacea. Bummer.. I also read this account from a pregnant woman with rosacea who had a doctor suggest IVIG for her rosacea, and wrote:
"My rosacea started to blow up and Dr G did not want to take any risk. He is one of few who thinks the rosacea is an autoimmunological disease. After 16 weeks I got very awful reaction on my face and Dr G suggested me to try IVIg (just because of the facial condition). I did not take IVIg since 5 of the experts in Sweden refused to help me with that and I did not want to take a risk to fly to London in the worse flew-time in Sweden. However with help of a sulphur creme and the time my face become better."
This scientific article also states that: "High-dose intravenous immunoglobulins (IVIGs) are increasingly used to treat inflammatory and/or autoimmune disorders. In dermatology, they provide therapeutic benefit in Kawasaki disease and certain cases of dermatomyositis." But it goes on to warn for adverse reaction, such as 4 patients who developed severe eczema after IVIG treatment: "We report 4 cases of a characteristic severe extensive eczematous reaction that occurred approximately 10 days after IVIG infusion for polyradiculoneuritis." The scientists did not understand the exact mechanism behind it but were clear that its onset within days after the IVIG treatment, implied it was a direct reaction to it. Which goes to show that your immune system does get a boost.
I was suggesting a couple of other anti-inflammatories in addition to NSAID's and steroids (not suitable for rosacea, can make it worse). Methotrexate is one, which lowers the immune system. I have talked with Professor Tony Chu about this in the past. He recalled several patients with rosacea who had very severe cases and responded well to methotrexate. However, he warned, it is a very serious medication which lowers your immune defenses not only in favour of auto-immune diseases and immune related inflammation, but also makes you much more prone to complications from a simple flu or infection. Flu can turn easily into dangerous pneumonia for instance, infections might not heal properly and the immune system in the long term also helps us clear up cancerous cells, if all goes well. So there you have a heap of potentially very serious side-effects, and thus.. he wouldn't prescribe methotrexate to me. I understood. Some other meds that might be interesting for rosacea inflammation are CellCept and azathioprine. These are non-steroidal medications that are broadly immune suppressive and anti-inflammatory, BUT have the same downsides as methotrexate; by suppressing the immune system they also increase potential risks of infection and even certain cancers in the long run. But, they are definitely safer for rosacea itself than prednisone (a steroid), which can cause vasodilation, permanent blood vessel damage, flushing, thinning of the skin and worsening of symptoms. The problem with steroids is that they can be super effective for certain other conditions, that can overlap in symptoms with rosacea, or can be misdiagnosed as rosacea.
Think for instance of lupus, dermatitis, erythromelalgia and even seb derm and quite a few other conditions that can cause flushing. Some doctors can determine through the use of steroids that someone in fact has an auto-immune disease, as corticosteroids will lower the immune response and improve your symptoms, as well as inflammation. Doctors are often easily swayed to throw some steroids your way when your symptoms are inflammatory and vague. But one always needs to be cautious with them when it comes to rosacea. Even short term use of a steroid cream can trigger rosacea (as it did in my case). And existing rosacea can worsen due to steroid creams or pills. But some dermatologists prescribe steroids regardless, as they will help initially to make the skin less red and inflamed. I am of the opinions that steroids, both topical or in pill form, should never ever be used as a rosacea treatment.
"Never, never, never, ever prescribe steroids forrosacea" Dr.Kligman (Dermatology-University of Philadelphia) & Dr. Pleig (Dermatologische Klinik Und Poliklinik der Universitat Munchen, Germany) state in their 1973 book, entitled Acne & Rosacea, First edition. Likewise, their second edition in 1993 harshly criticizes dermatologists that prescribe steroids for rosacea. - al Steroids For Rosacea. Source
Palmitoylethanolamide (PEA)I was also tipped on the supplement palmitoylethanolamide (PEA) for the treatment of pain, inflammation and even of mast cell instability. I ordered it this week and will give it a try as soon as it comes in. So far I have had bad reports with mostly all supplements however. Only Alpha Lipoic Acid seemed to help slightly, the rest either did nothing (a few) or made my flushing worse (most). But will try it anyway. So what is palmitoylethanolamide (PEA)? It is a fatty acid, produced in the body to combat pain and inflammation, by boosting your natural cannabinoids and protecting the nerves throughout your body. My rosacea is both vascular and neuropathic, meaning it shows itself through constant dilating of the blood vessels - flushing, redness - as well as giving me a lot of nerve pain in the face; my skin always feels tight, burned up and uncomfortable. And when I get massively flushed or more red than usual, it feels on fire, literally like someone threw something hot or acid-like on it. So the nerves in my facial skin have become hypersensitive after twenty years of rosacea flushing, inflammation and swelling. hence, this supplement sounds good so far :) What else? Palmitoylethanolamide (PEA) can also be found in soy lecithin, soybeans, egg yolk, peanuts, and alfalfa. However, most of these might not be a suitable option for people with food sensitivities (soy can be a trigger for rosacea as well as the high-histamine peanuts. Eggs can also be a trigger for some). As a supplement, PEA is available in tablet, capsule, and powder form and is considered a strong and safe natural painkiller and anti-inflammatory. More than 30 clinical trials so far have confirmed it can relieve complex pain (but also stated that more large-scale scientific research is needed). This scientific article concluded:
"PEA represents a promising addition to our therapeutic armamentarium for neuropathic pain, with potential for good tolerability and a low propensity for side effects."
"PEA was successfully used to relieve symptoms of inflammatory bowel disease (IBS) in animals. Mice with chronic gut inflammation have low PEA levels, while PEA supplements normalized bowel movement and prevented damage to the gut lining. In tissues taken by biopsy from people with ulcerative colitis, PEA lowered inflammatory cytokines and the buildup of neutrophils, immune cells that worsen symptoms and contribute to gut damage."
PEA Reduces Depression
"In a recent study of 58 people with depression, PEA (1,2 g/day) given over 6 weeks greatly and rapidly improved mood and overall symptoms. PEA was added to antidepressant treatment (citalopram) and lowered symptoms by an impressive 50%. This clinical study was a follow-up on numerous studies in which PEA improved symptoms of depression in animals."
PEA Reduces Histamine and Allergies
"PEA is a safe histamine-release blocker. People with allergies, histamine issues, and Th2-dominance will likely benefit from it. In animal and cell-based studies, PEA improved eczema and skin allergies by lowering mast cell activation and blocking the release of histamine. [..] In dogs with eczema, PEA helped soothe symptoms by reducing skin inflammation and itching. PEA reduced inflammatory substances (TNF alpha) and increased endocannabinoids in the skin (2-AG), which altogether strongly diminishes the allergic response." And there is more scientific info for now... Boring boring! But I want to share it anyway:
Peptide LL-37I was also told about research about a possible link between rosacea inflammation and the peptide LL-37. There is quite a bit of research online available on it, so I will write a bit more about it now. Know and realize here, that the true cause of rosacea has not been discovered yet. Doctors and scientists do not know what causes the different subtypes of rosacea (subtype 1: flushing and redness, Subtype 2: skin outbreaks and inflammation, Subtype 3: rosacea of the nose; rhinophyma, Subtype 4: occular rosacea of the eyes and the recently added Subtype 5: neuropathic rosacea with nerve pain and burning). It is likely that these different subtypes may have some different underlying mechanisms. For instance; subtype 2 is often improving from topical ivermectin or Soolantra applications (see entire blog post about this here). Indicating that demodex mites can play a role in this subtype. However, for subtype 1 with flushing and burning these creams rarely work well. The flushing is also not improving when using textbook rosacea treatments, such as antibiotic pills or creams. In fact, flushing is one of the most difficult to treat symptoms of all, in rosacea patients. Topicals like Mirvaso (brimonidine) and Rhofade (oxymetazoline) have proven mostly disastrous for rosacea flushers. Large groups of people had their rosacea skin burned or deteriorated, had bad rebound flushing episodes that were often called "hellish" and long lasting. They chemically constrict the blood vessels, only for the body to compensate with abnormal blood vessel dilation rebound flushing) afterwards. It destabilizes the blood vessels in the long run and patients have mentioned their rosacea progressing to areas and severity they never had it before. of course another group states to have success with it, but it's a Russian Roulette drug, just like steroids. Better to reduce the flushing in my opinion are anti-flushing medication, or IPL or laser. (Read all about this here and here). And facial flushing goes by different pathways than the spots and outbreaks that subtype 2 patients tend to get. So, one big discovery, of one single cause, might be unlikely. Nevertheless, a (faulty) peptide called LL-37 may play a role in rosacea inflammation according to some research. In this scientific research, it is stated that:
"Chronic, common inflammatory skin diseases such as atopic dermatitis, psoriasis or rosacea are characterized by dys-regulation of cutaneous innate immunity (aka; there is an issue in rosacea skin with the normal functioning of the immune system function). Cathelicidin LL-37 is an important effector molecule of innate immunity in the skin and atopic dermatitis, psoriasis or rosacea show defects in cathelicidin expression, function or processing.
*In rosacea, cathelicidin processing is disturbed resulting in peptide fragments causing inflammation, erythema [skin redness] and telangiectasias [small dilated blood vessels at the surface of the skin].
*In atopic dermatitis, cathelicidin induction might be disturbed resulting in defective antimicrobial barrier function [causing infection]. *In contrast, psoriasis is characterized by overexpression of cathelicidin. However to date it is unclear whether pro- or anti-inflammatory functions of cathelicidin predominate in lesional skin in psoriasis.
In this review, the current evidence on the role of cathelicidin LL-37 in the pathogenesis of inflammatory skin diseases will be outlined. As cathelicidin LL-37 might also serve as a future treatment target potential novel treatment strategies for those diseases will be discussed."
So the research article suggests that the skin of people with rosacea has a disturbed functioning of the LL-37 cathelicidin peptide. Does that mean that there are more of these peptides in rosacea skin? or less than normal? Or that there are normal numbers but that the peptides do not work as they should do in rosacea skin? And what is this LL-37 peptide exactly?
Cathelicidins in the human body play a crucial role in the bodies immune defenses against bacterial infections trying to infect from the outside. Wikipedia states that "Patients with rosacea have elevated levels of cathelicidin." And when wiki states that "Excessive production of LL-37 is suspected to be a contributing cause in all subtypes of Rosacea", it cites this research paper, which is the same as the earlier quoted research. Its authors, M. Reinholz, T. Ruzicka and J. Schauber published in 2012 their research, stating that normal skin has three ways to protect itself from bacteria's from the outside world, trying to get in. First you have the top layer of the skin, which forms a shield (if the skin barrier functions as it should do!). This outer layer of skin has special cells that work as part of the bodies immune system, signalling when substances enter the skin that do not belong to the body itself, for instance a bacteria. They signal to the other cells of the danger once a bacteria does try to invade the skin. If this happens, the bodies immune system sends specific cells to the surface that are causing inflammation, trying to work out or kill the invading bacteria. One of these specific cells are antimicrobial peptides (AMP's), of which there are to date several hundred different types found. They can kill bacteria by messing with their cell membranes (for instance in case of a skin injury), but also fungi and viruses. So they are part of our skins little army, so to say. Cathelicidins are part of this AMP system. The precise cathelicidin involved in AMP is called Cathelicidin antimicrobial peptide (CAMP). And Cathelicidin LL-37 belongs to the CAMP family. It can break up bacteria, fungi and viruses that land on the skin. But they can also give off an "alarm", which brings the skins army into action, causing inflammation to work out or kill the invading substances. They mainly get active and detectable in the skin once there is a skin injury. When all is normal and the skin functions as normal, they are hardly to be found in the upper skin. But Cathelicidin LL-37 can also trigger the immune system. Thus, it plays an important, dual, role in the immune function of the skin. And when this LL-37 peptide does not function as it should, it can in fact have the reverse effect on the skin, and cause skin inflammation. And also allow bacteria to infect the skin. The scientists found that in rosacea skin, cathelicidin LL-37 often does not function as it should, and what is worse, they found that rosacea skin has much higher levels of this LL-37:
Rosacea skin deals with different symptoms, but mostly from chronic inflammatory and vascular response [blood vessels dilating more than they should]. The "alarm" function of LL-37 is off in rosacea skin, meaning it calls for the help troops to come when there is, in fact, no real threat... No invading bacteria to fight off, no fungi and no viruses. And instead, it stimulates inflammation of the (rosacea) skin and dilation of the blood vessels (thanks to the help of nitric oxide and EDHF):
The scientists got confirmation about all this, when they injected these specific cathelicidins in the normal skin of mice. They all developed rosacea-like skin symptoms then. The problem is now, that scientists do not understand yet WHY rosacea skin has these higher numbers of cathelicidins,a lthough they found 3 different 'portals' so to speak, through which the extra peptides were produced. They were retinoid-, vitamin D- and cytokine-activated. The vitamin D-pathway, for instance, could explain why rosacea is only present on the face normally, and not on the rest of the body: the body is usually covered up and it is the face that gets the most sun-exposure and therefore the most vitamin D. And therefore, the more vitamin D is made in the skin, the more Cathelicidin LL-37 (and thus the more disrupting inflammation and vasodilation). But this is only a small part of the puzzle, as many people with rosacea shun the sun and protect their faces from sunlight at all times. Also, many with rosacea have low levels of vitamin D (read more about that in this post). But scientists also found that cathelicidins could be triggered by keratinocytes (outer layers of skin cells), which have nothing to do with vitamin D. They found that the outer skin cells themselves can signal the making of more Cathelicidin LL-37 when they are injured, get exposed to UV radiation, or when the outer layer of the skin gets disrupted in any way. Skin Stress, one could call it. Ánd, interestingly: skin stress included heat. "This again could explain why rosacea patients often report on unspecific triggers (e.g. heat) which would mediate their pro-inflammatory activities through ER stress and cathelicidin induction." So when our rosacea skin gets triggered by heat, for instance you enter a very warm room, then this heat touching the skin will cause stress in the outer layer of the skin, sending of "alarm signals", which stimulate the LL-37 and other peptides to come into action and create.... inflammation. Physical stress can trigger the same response by the way, as well as alcohol consumption: Inflammation.. Just like we see happening in our rosacea faces when dealing with triggers like heat. Demodex mite infection can also trigger the skin to make these inflammation alarm reactions, as demodex mites can cause increased protease activity in rosacea skin, which does the alarm bells of Cathelicidin LL-37 go off again. Which in turn trigger inflammation, redness and blood vessel dilation in the skin. This is probably why oral and topical antibiotics (tetracyclines for instance), azeleic acid and retinoids can work for rosacea: they directly interfere with this pro-inflammatory system and reduce the inflammation or stop it from being formed altogether. So antibiotics can work for rosacea not because of their ability to kill off bacteria, but instead of how they reduce inflammation. And the same goes for anti-demodex treatment. which can take away the prime trigger for LL-37-related skin inflammation IF you have a demodex mite infection.
And avoid sunlight on your face. Vitamin D from sun is a direct trigger for LL-37-mediated inflammation and blood vessel dilation of rosacea skin. You can bronze on the rest of your body, just not your face, if you want to calm down rosacea-inflammation. (And now that I am at it, could this perhaps explain why so many people flare up from not just sun exposure, but also from taking vitamin D supplements? I get beyond beet red from them and never understood why. Maybe here we have it, the explanation). Certain supplements and herbs can also act as anti-inflammatories. Check my (still not fully finished, sigh) blog post about them here. Think of supplements like turmeric/ curcumin or boswellia for instance. If you want to know even more detailed, microscopic information about how exactly this mechanism works on cellular level, I advise you to go to this science article and scroll down to the section Rosacea. You can also read more in this scientific article. But that is not all, because these LL-37 cathelicidines are not only found in the skin. But also for instance in the bowels. In fact, LL-37 is linking to some other health issues (including many auto-immune diseases) that quite a few people with rosacea mention to suffer from, for instance: gut and bowel infections/inflammation, depression and anxiety and cardio vascular disease. Which could explain why this badly functioning, overabundance of LL-37 has different effects on the body, and perhaps (?) why many of us suffer from bowel issues, depression and anxiety on top of our skin problems. In other words: we REALLY need a treatment ASAP to bring these cathelicidins back under control! It might also be yet another way in which immune suppressing drugs, like the ones I discussed at the top of this blog entry, can work. When you suppress the immune function of the body, you also suppress the formation of LL-37 cathelicidin. And thus of inflammation, blood vessel dilation and redness. Wished those meds came with a better side-effect profile :)
Last, I read something about depression
Cathelicidins in the human body play a crucial role in the bodies immune defenses against bacterial infections trying to infect from the outside. Wikipedia states that "Patients with rosacea have elevated levels of cathelicidin." And when wiki states that "Excessive production of LL-37 is suspected to be a contributing cause in all subtypes of Rosacea", it cites this research paper, which is the same as the earlier quoted research. Its authors, M. Reinholz, T. Ruzicka and J. Schauber published in 2012 their research, stating that normal skin has three ways to protect itself from bacteria's from the outside world, trying to get in. First you have the top layer of the skin, which forms a shield (if the skin barrier functions as it should do!). This outer layer of skin has special cells that work as part of the bodies immune system, signalling when substances enter the skin that do not belong to the body itself, for instance a bacteria. They signal to the other cells of the danger once a bacteria does try to invade the skin. If this happens, the bodies immune system sends specific cells to the surface that are causing inflammation, trying to work out or kill the invading bacteria. One of these specific cells are antimicrobial peptides (AMP's), of which there are to date several hundred different types found. They can kill bacteria by messing with their cell membranes (for instance in case of a skin injury), but also fungi and viruses. So they are part of our skins little army, so to say. Cathelicidins are part of this AMP system. The precise cathelicidin involved in AMP is called Cathelicidin antimicrobial peptide (CAMP). And Cathelicidin LL-37 belongs to the CAMP family. It can break up bacteria, fungi and viruses that land on the skin. But they can also give off an "alarm", which brings the skins army into action, causing inflammation to work out or kill the invading substances. They mainly get active and detectable in the skin once there is a skin injury. When all is normal and the skin functions as normal, they are hardly to be found in the upper skin. But Cathelicidin LL-37 can also trigger the immune system. Thus, it plays an important, dual, role in the immune function of the skin. And when this LL-37 peptide does not function as it should, it can in fact have the reverse effect on the skin, and cause skin inflammation. And also allow bacteria to infect the skin. The scientists found that in rosacea skin, cathelicidin LL-37 often does not function as it should, and what is worse, they found that rosacea skin has much higher levels of this LL-37:
"Indeed, cathelicidin is strongly increased lesional skin in rosacea compared to the skin of non-affected individuals."
"In rosacea increased levels of the vasoactive and inflammatory host-defense peptide LL-37 and its proteolytic peptide fragments are found which can be explained by an abnormal cathelicidin production and pathologic protease activity."
And avoid sunlight on your face. Vitamin D from sun is a direct trigger for LL-37-mediated inflammation and blood vessel dilation of rosacea skin. You can bronze on the rest of your body, just not your face, if you want to calm down rosacea-inflammation. (And now that I am at it, could this perhaps explain why so many people flare up from not just sun exposure, but also from taking vitamin D supplements? I get beyond beet red from them and never understood why. Maybe here we have it, the explanation). Certain supplements and herbs can also act as anti-inflammatories. Check my (still not fully finished, sigh) blog post about them here. Think of supplements like turmeric/ curcumin or boswellia for instance. If you want to know even more detailed, microscopic information about how exactly this mechanism works on cellular level, I advise you to go to this science article and scroll down to the section Rosacea. You can also read more in this scientific article. But that is not all, because these LL-37 cathelicidines are not only found in the skin. But also for instance in the bowels. In fact, LL-37 is linking to some other health issues (including many auto-immune diseases) that quite a few people with rosacea mention to suffer from, for instance: gut and bowel infections/inflammation, depression and anxiety and cardio vascular disease. Which could explain why this badly functioning, overabundance of LL-37 has different effects on the body, and perhaps (?) why many of us suffer from bowel issues, depression and anxiety on top of our skin problems. In other words: we REALLY need a treatment ASAP to bring these cathelicidins back under control! It might also be yet another way in which immune suppressing drugs, like the ones I discussed at the top of this blog entry, can work. When you suppress the immune function of the body, you also suppress the formation of LL-37 cathelicidin. And thus of inflammation, blood vessel dilation and redness. Wished those meds came with a better side-effect profile :)
Last, I read something about depression I heard from my penpal about a book on depression, a memoir by the author who wrote Sophie’s Choice. It was a good read and gave more insight into people who suffer from the extreme forms of depression, some that are so intense that it leads them to suicide. In my own life there have been suicides, as I have written about in some cases in my day to day blog updates. But in the media there are also what seem increasing numbers of young and relatively young people taking their own lives. Whether or not that is a sign of our modern, individualized and social-media pressured times or not... is another topic. And I have already written some thoughts on that before. But this book is probably for those who find themselves judgmental when hearing about people who have committed suicide. Wondering why they didn’t just “man up” and do whatever it took to keep on going. Why they didn’t "get" that they are leaving a trail of suffering behind; friends and family will mourn their death and might even blame themselves for not doing something to prevent it. Possibly leaving some in a state of lifelong anguish and guilt. 'So very selfish, suicide...' That is the usual message, of course, and to think long term instead of short term; to imagine yourself X years down the line, when the stuff you worry about today may in fact be long forgotten, and life will have picked you up and got you back up your feet. But this book offers some different perspectives on it all, and may change peoples opinions perhaps. The author explains the biochemical abnormalities in the brains of people who suffer from depression. She explains how even too much alcohol can make us do and think things we normally wouldn’t in our sober ways. How chemical changes in the neurotransmitters of sufferers of severe depression could in fact change the way their brain functions, and their ways of thinking. The author explains depression as a state that one can’t simply “let go of” for a momentary period of time. Most physical pain comes and goes, and is rarely constant. But depression, heavy depression, just hangs in the air like smog over Los Angeles, never letting up, never letting the sun peak through, never giving you a chance to catch your breath.
In the authors words (with a rosacea-fitting example): “What I had begun to discover is that, mysteriously and in ways that are totally remote from normal experience, the gray drizzle of horror induced by depression takes on a the quality of physical pain. But it is not an immediately identifiable pain, like that of a broken limb. It may be more accurate to say that despair, owing to some evil trick played upon the sick brain by the inhabiting psyche, comes to resemble the diabolical discomfort of being imprisoned in a fiercely overheated room. And because no breeze stores this cauldron, because there is no escape from this smothering confinement, it is entirely natural that the victim begins to think ceaselessly of oblivion.” The author himself does get better, so there is a silver lining to his story. He says there are various reasons for depression and that sometimes multiple ways of tackling it are needed, medication, psychotherapy, and I might also add positive daily routines and keeping good health.On Nothingness II
My penpal also sent a great contribution to the whole Nothingness topic (below). I'll add it there, just scroll down for it if you want, to the update of January 25th. Also some new thoughts of my own on that topic.
Oh and a last quote, from that book from Dostojevski I am finishing soon (Crime and Punishment, a rea treat). "If two clever men meet, who are not intimate but respect each other, like you and me, it takes them half an hour, before they can find a subject for conversation. They are dumb: they sit opposite each other and feel awkward. Everyone has subjects of conversation. Ladies for instance. People in high society always have their subjects of conversation. C'est de rigueur! But people of the middle sort, like us, thinking people that is, are always tongue-tied and awkward.. What is the reason of it? Whether it is the lack of public interest, or whether it is we are so honest we don't want to deceive one another, I don't know. What do you think?"
Lasts me now to wish the people in the midwest and north of the United States very good luck handling the epic cold. Stay warm (without flushing too much) and don't forget the poor little birds and wildlife out there.
Songs of the day
I have been tested for Helicobacter pylori IgG antistoffen. Seen my general practitioner about it some weeks ago and she sent me for a blood test. This because some people on rosacea forums and groups claimed to have "cured" their rosacea after getting treatment for H.Pylori. Now, that is often an antibiotic, and antibiotics are known to help some case of rosacea, regardless of H. Pylori. Also, the symptoms of H. Pylori in rosacea skin are often said to be skin outbreaks and p&p's, which I don't suffer from. (Only severe flushing, redness and burning for me). Research like this one concluded on this topic:
"Epidemiological investigations and experiments have confirmed that H. pylori infection is associated with the development of rosacea. The effect of anti-H. pylori therapy is better than the routine therapy for rosacea. H. pylori can stimulate the immune system to produce a large number of inflammatory mediators, leading to the occurrence and aggravation of rosacea inflammation.
Abram et al evaluated the risk factors of the disease. H. pylori rate was lower in flushers and higher in the papulopustular subtype. [..] Patients with papulopustular rosacea had a better response [to H. pylori treatment] than those with erythematous (skin redness), which confirmed the results from previous studies.
This summary of various research papers came to a more ambiguous outcome. Some researchers found that anti-H. pylori antibody levels were higher in rosacea patients. Other research found that 67% of rosacea patients tested positive for H. Pylori, and that there was a higher prevalence of H. pylori in patients with rosacea. And some (but not all!) patients who have both rosacea and H. pylori infection can to see their rosacea calm down as well when they treat the H.pylori. Other researchers failed to establish a role of H. pylori in rosacea patients, and some researchers downright concluded that the relationship between rosacea and H. pylori may be a myth. The authors concluded: "Rosacea is a skin disease with an obscure and complicated pathogenesis. Many mechanisms have been described but its etiology remains an enigma. There is not sufficient evidence regarding how determinant the role of H. pylori is. According to some authors, rosacea is correlated with gastrointestinal disorders which justifies further clinical and laboratory examination. Based on the fact that the studies were not extensive, controlled studies are required. Additional research is mandatory in the field of the microbiology of H. pylori as there are subtypes with different levels of virulence. Further studies are warranted to delve into the multifactorial nature of rosacea in order to elucidate the role of each factor in the pathogenesis of the disease."But... no harm in testing it or myself! Well I got the results back today and they are negative. No H.Pylori infection. My blood level was 5. The doctor's assistant said that anything under value 50 is considered negative. I looked up the exact values:
From To Unit Comment
0 35 U/mL negatief
35 50 U/mL grenswaarde
50 U/mL positief
Apart from that my face hurts and burns and the cold urticaria that had just disappeared, are now returning. Feeling really poorly and in pain, my whole right cheek is on fire but cooling it makes the cold urticaria worse, which makes the burning and heat worse etc etc etc.Wished I was Vera Ellen at the moment:
And on the topic of ABBA: Below the last update on here I added a first, rambling mess of a piano attempt at playing something that resembles ABBA. Then I heard this today and am in awe haha. Time to get the sheet music. Hope it will one day sound like this guy who does an amazing job making "Lay all your Love on me" from Abba sound like Bach -in my opinion- :)
All's OK here. Skin is behaving mostly, although I woke up very flushed last night (too many blankets, I was overheating) and after a (too) long hot shower I was painfully flushed for a few hours too, unfortunately. I am trying to keep the temperature in the house medium; not too cold and not too warm,so around 16-17 degrees Celsius is ideal for me. Still use a fan.. Had some enjoyable communication with a penpal. He wrote about interesting topics, well to me. Said that his greatest fear in life is... death. Which he found ironic, since he spends so much time reading and studying about it. He thinks it is about not having lived life or having too many regrets or not pushing hard enough... He reads a lot though. And leaning towards Buddhism, he is mostly a minimalist and tries not to collect things, except for books, and even then if he can find them at the library he will read them that way instead of buying them. He recalled reading a book on Naikan, the Japanese system for appreciating what you have and practicing gratitude. Basically you look at your day, or at your relationship with a friend, or even at your life and ask three questions. First: what have a I received from... Second: What have I given to... And finally: What troubles and difficulties have I created. To break it down, lots of people go through life, thinking that the world owes them something. But does it, this friend wonders? Or do we owe the world something. If the world owes us, that would inherently mean that we have given more than we have received. But have we? We have air to breathe, people gave us shelter, food is grown by others that we now eat, etc... The same goes for friendships; we tend to think often that our friends owe us, somehow. But do they? Maybe we owe them? Montaigne wrote: "No one distributes his money to others, everyone distributes his life and his time on them." We tend to look superficially at life and without delving deeper we might miss all the “blessings” that come our way unsolicited. So lets take the earth. (Now it gets very native religiously) What have I received from the earth? Air, water, stable ground, trees to look at, an environment to live in that provides things. And what have I given back myself? Hmmm.. You may say: "Hey, but I do recycle!" Ok, but now we go to the next question: what difficulties have I created? Many will have created more trash. Consumed oxygen and given off carbon dioxide. So basically the earth has given me more than I have given it back. That is another way of thinking at out life and the world we have been born into. Not very popular in the West, with our Me me me meeeeeee attitudes (many of us at least) and consumer lifestyle surrounding having as much good times as possible. But still, an interesting way of thinking.
The researcher involved started studying the bacteria we have in our digestive tract. There is more and more research being done on the importance of the gut flora for our health, h wrote. These are the bacteria that started out with us millions of years ago, helping us produce vitamins and other useful things. When they are not healthy or not flourishing they can even talk to us, apparently, via the vagus nerve and some say that influences even why we can feel bad at times. A lot of inflammation in the body also is linked to bacteria in the gut and even depression is linked to it. Its not originating in the gut, but gut inflammation can travel through the blood and affect other parts of the bodies, incl. the brain. They also found that heavy people have less diverse flora than skinny people. They even found one specific flora species that causes weight loss, which was proven in rat experiments. If you feed two rats the same diet, the ones who has been given these specific bacteria will show loss weight, while the other doesn’t. Scientists are looking at this for future weight loss treatments. And scientists today can even tell you personally which diet is best for you, based on the bacterial balance in your gut. Penpal wrote about a guy who is really into studying all this. He has followed many different diets, trying to find the best one to increase his bowel flora. He went to Africa, hung out with this certain local tribe there, one of the oldest still around. The tribe has one of the most diverse bowel floras on the planet, he somehow knew, or found out. He ate what they ate, drank their water, trying to see if he too could get a flora like theirs.. But he wasn’t satisfied with just that, he had to have THEIR flora. So he tested one of the villagers for HIV and other diseases and when found this man was clean, he took some of this guys fecal matter..put it in a turkey baster..shot it up his..well you know, and stood on his head for 5 minutes to let it sink in. He did this for ten days. Now I would say that is taking your research to the limits. No word yet on the results of this. Now fecal transplanting is nothing new..some people do this to help increase their flora. I think I will stick to my probiotic pills though :) I know myself of specialists in hospital being able to also also do this, the less gruesome way. Might even be by having the patient swallow sterile capsules with poo in it, which are supposed to end up and fall apart by the time they reach the bowel. I discussed it with my specialist some years ago - I have a mild inflammatory bowel disease too - and he confirmed it is actually tested and proven to have an effect. No nonsense. But it has risks, including HIV indeed and contracting other diseases. Its not as simple as it seems apparently.
But gut bacteria in general are being linked to auto-immune diseases and inflammatory illnesses.You can read an entire blog post I made about its link with rosacea here. I know that one possible trigger for auto immune diseases for instance is... modern man's extreme hygiene! It might sound contradicting, but a bit of dirt in your youth is good. For instance, humans normally always went through some ringworm infections as children. Throughout mankind. What it does is trigger the immune system to attack the bad guys; those worms. But modern day kids (the city types) no longer go through worm infections, thanks to overzealous mothers waving with disinfectants. Result? The immune system has no worms to attack and by lack of real invaders, it sometimes starts attacking organs in the body itself. The basics of auto immune diseases. I know of patients with serious Crohns diseases who.... (don't eat right now)... got poo transfers (adding good bacteria to their own) and even ones who had pig worms inserted in their bowels. Which cleared up their symptoms sometimes! Because it affects their immune system. But my dermatologist tole me that it is risky, and that people can also die from these worm infections if they grow out of control. Bleh!!!!
Low vitamin D is another thing in the spotlight now. (Read my blog post "The role of Vitamin D in rosacea/facial flushing" here). Low vitamin D levels are linked to quite some (advanced) cancers apparently, except melanoma. And many auto-immune disease sufferers are low on Vit. D. I am myself very low on it too. Every blood test I am super low, unless in summer. I cannot be in the sun with my face. The rest of my body does tan so I try to get half an hour of sun exposure on my body in spring and summer (no sunscreen!). I also have a UVB narrow band lamp, for winter, shining it for a minute a day on my body to make it naturally create vitamin D. The pills and supplements make me flushed very badly. They are synthetic. But enough vitamin D is important for good body functioning. And diet can often be important too. Some foods are pro-inflammatory, others are anti-inflammatory. Many patients find that they cannot expect to eat a daily, weekly, yearly diet of fast food, fried foods, foods high in sugar, and still control their auto-immune diseases well. Although not everyone has food triggers. And often pro-inflammatory food can be part of the fuel to the fire to the inflammation. But curing auto-immune or progressive inflammatory diseases through diet is another matter altogether though, one I don't usually believe in to be honest. Unless you had something different altogether you dealt with, like a food allergy. Although there are miraculous cases where diet was the culprit. But it is rare. There is no known cure for most auto-immune or inflammatory illnesses yet at this point and often it is not even clear exactly what causes them in the first place :( Scientists just have not yet found cures for auto-immune diseases. They are multifaceted and complex. It sucks that regular medication can help so much, but comes with side effects often... Eating 'clean' all the time is very hard.. The best tasting things are usually not the best for our health. I get sick and tired of vegetable stir fries and fruits and meat often. I like chocolate and cakes and pizza! But am trying to be strict and only sin now and then, in small portions. Food addiction is another thing. My penpal told about his obese relative who needs a scoot mobile to move around now, and is not happy under it, yet cannot withstand fast food. And how frustrating his family finds this. "Like the person who has had a heart attack, and then still eats a cheeseburger every couple weeks... Why? For 2 minutes of pleasure he or she is risking going back under the knife..or just keeling over." But he continued to say that he realizes that the relative can’t do much now, and that food at least gives some instant, short term pleasure.We mostly all have some form of escapism; may it be through TV binge-watching, being too long on the internet daily or getting drunk.I tend to think it is an addiction, a disease, and not so much (primarily) a lack of will power. Something is lacking in life, there is an emptiness, that food is literally filling for a short moment. Almost a way of medicating yourself with food. That moment you have a cream pie in your mouth, things feel good for a few minutes... Food is the only friend of some people, sadly enough, But a stingy friend for sure, considering all freedom and good feelings it takes away along the way. Some people snarl at obese food addicts and think alcohol or drug addiction is harder to beat, but lets face it; you can banish alcohol and drugs from the house entirely. But you cannot ban food entirely. You need to eat. And like an alcoholic can go on a boozer bender after drinking one glass again, a foodie has daily temptation by having to eat, but not too much and the right sort of food. Its a daily challenge and towns and cities are full of food smells, stalls, advertisements etc. They tested mice in the laboratory, who they made addicted to cocaine and sugar, and when given the choice between both, the mice all chose sugar over cocaine. Go figure how hard it is to stop :)
Overall. Maybe this is by design.. maybe nature made us this way. We are the only animals who, together with maybe elephants and dolphins, are the only ones who can envision the past and the future. Our own future and ending too. And who can anticipate things to the degree that we do. But because of this, we might have to have some kind of limiting factor build in for ourselves. We can’t always be worried about the far future, or we would drive ourselves insane and not do what is necessary for every day life and every day survival even. So nature made us have to work to see the future. So we appease ourselves with joyful things and escapism. It is almost like what the Stoics considered Fortune or Fate. By looking at Fortune and excepting it, you can relax. We never really accept dying, so we don’t think about it and live like it might never happen. We put off things we really want to do, don’t face challenges we really need to face. Anything to feel that life is under control, and peaceful, and pleasant. That is probably why most humans feel good with believing in a religion of some kind. - Many over here no longer believe in institutionalized religion anymore, but many do think that there is "something" after death. It is hard for our brain to imagine and accept eternal nothingness. I think it is more logical that there would be something else, afterwards. More soothing for sure. So religion can help most of all to stop all that wondering and fretting. Religious people can just put their worries aside, into the box of their religion, who hands them the answers they need to be calm and content. But some pessimists will say that life is suffering… Maybe not at this exact moment but then it will come. Some people suffer all day long, others now and then. All life has suffering in it, even if it is minuscule. We can’t even sit still for more then a short while without moving around, because our body’s suffer from just staying in one place too long.
But we do live often as if we have no restrictive time table hanging above our heads. As if we can live for another few hundred years. When in fact, time goes so fast. But we postpone so much. And then death strikes you by surprise and.. if you were able to look back on it all, many people might have regrets of things not done? The Samurai, I learned, expected that we may even suffer on our death beds, and they would rehearse death every day, so as to be able to handle it with ease and grace once it really knocked on their door. Like some of the Stoics would do too, in fact. That is not something you see in modern western society, for sure :) They would be aware that time is ticking and that you need to start making your life meaningful. Now that doesn’t mean we have to go sit in a cave for our remaining years, but it does mean to give something back, in my humble opinion, to help ease the suffering of others…even of cats haha. I also think not everyone is so aware of all this on a daily basis as others. I remember writing in my diary at age 14 something along the lines of: "We sat in the touring bus bringing the whole class to a day trip to Germany, and I noticed how everybody was so chirpy and chatting about nothing in particular. And I had just worried all night about what would happen after death, and trying to imagine what 'eternal nothingness' would be like. And I thought to myself: They are all laughing. DON'T THEY KNOW THEY WILL ALL DIE AND BE NOTHING FOR ETERNITY??"
Haha teenage angst. But, in all honesty; I am still afraid of all this. I am still, pretty much daily, aware of my own mortality and very short time on this earth. Probably a strange defect, I don't know, I rarely talk with other people about this topic. There is a Dutch/Moroccan writer I like, called Hafid Bouazza, and I read an interview with him in which he explained his womanizing, boozing, free spirited year. And how at age 40 (!) he ended up in hospital as a result of alcoholism and permanent liver damage, and he described how he suddenly was made painfully aware of his own mortality. Like a light flashing on. I found that dumbfounding. That he as a writer, someone so reflective on things, needed that sort of a wake up call to even thínk about his own mortality. At that ripe old age. Just goes to show what mechanisms our brain has to ignore the obvious. It feels like a gift to me that I have the free time to read and scribble things here and there. To reflect and not live in a rushed haze. I see that as richness. Time. I like to materialize things, write it down. Always had, have diaries since age 8. It helps to trap some memories and some impressions of time, in a sense. I asked my mother the other week how many memories she has of her working days, or of our birthdays as kids. Hardly any, she admitted. She was sad to say that actually. I have this wealth of details and stories of my life. Probably only for myself haha as I don't have kids and don't plan on them either (with some regret, on some days). But for my remaining lifetime it is a great source of memories. Not not everyone likes to live in the past or even look back. I do somehow. Why would that be? What is to get out of reflections on the past, compared to focusing on the future? I am melancholic, most likely.
My dad likes to answer my question about what he thinks will follow after death with one word: "Nothing". But what is 'nothing' anyway? In science also. For instance: what was there before the Big Bang? I happen to think there was another expanding and then imploding universe before ours, stretching out to its maximum size and then imploding into a tiny ball eventually with infinite weight, containing all the atomic building blocks for another universe, following after the explosion of that tiny ball again. Like an ongoing cycle. But others think that before the big bang, there was "nothing". And that in science something can be formed out of this "nothing". Which I find hard to comprehend,probably because my brain isn't big enough or "right sided" enough. Shouldn't there at least be something, no matter how microscopically small, to form a universe? Something to warrant a big bang? Others will say God or some type of God with another name, has created it all. But was that God always there? How can something always have been there? Given that everything around us, ourselves included, has a beginning and an end. And if not, who created God? Its an infinite carousel of wonderings. But scientifically speaking, "Nothing" can be looked into further. Here is a nice trailer of a documentary "In praise of Nothing":
But mathematics is a human invention and creation. The number zero was first thought out in India, and initially the western world here wanted nothing to do with it. Too close to the 'vacuum', so not something they wanted to deal with. Now we have grown used to zero in mathematics and its intrinsic referral to nothingness. But many people are frightened about the nothingness of death. That is psychological nothingness. Then there is philosophical nothingness. Philosophers have done a lot of thinking and writing about nothingness. In China, philosophers identified Nothing with the blank page. You can think for yourself that soon, a new poem will be penned down on it. But that is only a thought at that stage. Heidegger said:
"If there is something like Nothing, then it also has to have a function and do something."
"Das nichts nichtests" - Nothing does a lot of nothinging."
"Das nichts nichtests" - Nothing does a lot of nothinging."
You can apply nothingness also, in art for instance. John Cage made an installation that shows you silence in around 4 minutes. James Turrell made a dome in Holland, which has a valve showing the sky above you, showing nothingness in a way. Artists trying to get a grip on our daily use of Nothingness within their art. Anish Kapoor made dark holes from pigment that seem to lead to nothingness.
Update (31st Jan.), my penpal replied with some interesting thoughts on this topic:He said that "nothing" as a concept would normally mean that it has no causal relations. And something with no causal relationships cannot, in itself, cause a causal relationship. And the funny part is that our brains are wired in such a way, that we cannot even comprehend this concept fully. Because we by default are observing. And are standing on the outside, trying to observe something that is.. nothing. It is simply impossible. Because we are "something". I guess he means that being something, we cannot truly imagine what it is like to be nothing. We are using our brains (something) to come up with an image (something) and concept (also being something) of nothing. It will never work. He meditates and thinks it fits in with the theme of Nothingness. Because certain types of meditation are intending to make you float out of your conscious awareness. We supposedly step out of "duality" then, but you get back into the same old trouble once you want to describe your transcendental meditation experience: because you need to use language to do so which.... drags you right back into duality. Language is never going to truly capture feelings and experiences, and especially not when it is used to describe nothingness. But all we have is language, so we use it to help describe what we see as reality; or more exactly, describe what reality isn’t, and by doing so we come to a better understanding of the true nature of existence. Ahum.. I am not convinced that meditation is the portal to enlightenment here :) He continues that he isn't in agreement with people who think like agnostics or atheists that there will be eternal nothingness when we die. Because if we really look deeply at the world around us and at our everyday reality, we actually see that we are dying all the time. Over time, none of us and nothing around us will remain exactly the same. When we look at ourselves and the world, is there anything permanent, unchanging we can find? Some things might seem to last longer than others, but if look deeper, we will see that nothing is permanent. A mountain is made of particles which are made of more particles, which are..well.. and they are always changing. Everything is interdependent, nothing exists in isolation and everything effects everything else; everything causes a reaction of some sort in something else, over time. So if there was any one thing that was permanent, and that would never ever change, then that would mean that it could never interact with any other aspect of reality that was not permanent.. Because if it did, then that one permanent thing would have to change in reaction, and thereby would no longer be a fixed permanent thing. This would have a cascading effect and then the whole of reality would be frozen. Moral of the story; don't bother thinking about or worrying about what happens after death. It is just a blank wall, for all of us who are living. And even of that we are not sure :) But the ego is strong, and it is hard to shake off the desire, the impression perhaps even, that we are the star of the movie, the center of the universe that keeps us stuck.
"Up onto the overturned keel, Clamber with a heart of steel, Cold is the ocean's spray, And your death is on its way. With maidens you have had your way. Each must die some day.
Or: "When Death comes, do not fear it. Embrace it. As if you were lying next to a beautiful woman." When men die in battle, they go to a special place in Valhalla (Vikings version of heaven). Odin comes in the shape of a raven sometimes, waiting to see which one of the battle men he will take to his great hall. And when a woman chooses death, to follow her dead master on his trip to Valhalla, she is seen by the Angel of Death, a tall white-blonde tattooed woman, looking like a Greek sculpture almost, who hears her death wish and sentences her to death. A priest from England who was taken as a slave does not want to watch the execution but a small kid tells him: What's the matter with you?? It's only death!" I guess only a religious person could say such a thing :D Coming back to the concept of nothing, then on earth we would probably associate it with zero. But even zero is not nothing. Because it can change the meaning of other numbers, by being placed in front or behind it. So even zero is not nothing. If you want to believe in nothing, you must first make sure that nothing actually exists. And even of that we are not sure, and I would say highly unlikely, on a molecular level. I remember being gobsmacked once at university about something quite simple. One of my teachers, a Slavic woman with a thick accent, said that facts are only true as long as new facts haven't caught up with them. I said; but a proven fact today can surely never turn out to be completely wrong? No, she said, but new facts can put the current facts in a very different light, and make us see a bigger piece of the puzzle, changing the meaning we give to them. Eye opening, I had that ah ha light bulb moment then. So that makes you look differently at facts for ever. Nothing is set in stone, everything is always evolving, changing and what is considered the reality of today, may be outdated in the future. One can collect a lot of evidence for something, or against something, but in the end, it all boils down to assumptions, associations and personal perceptions. No matter how much evidence we collect, there is always the possibility of more, that is significant enough to change one’s mind.
Songs of the day (first = two Dutch
brothers, excellent pianists)
brothers, excellent pianists)
I saw the (Junior) doctor of the hospital department of Rheumatology/Immunological Diseases on Wednesday, and he took a full hour to ask me literally everything about my symptoms. And to note it all down. Never been asked so many detailed questions. From my triggers to how my flushing and burning and skin redness started and how it progressed; what triggers my skin (which exact foods, what sort of temperatures, sun? Light?). What medication is doing what for me, which ones I have already tried and what side effects they give. Whether or not I have had a biopsy taken from the skin yet. What things I was already tested on, what the test results were. My other health issues. When my hands started to flare. I had a bunch of blood and urine tests done that day and he said they would test for things like histamine, ANA (auto-antibodies), inflammation, immune function and some auto-immune diseases, including lupus. He said there is a very good chance that nothing specific will come out of it, - again - and that the existing trend of previously measured slightly elevated blood levels for things like ANA and inflammatory substances might continue; not being negative, but also not being high enough to be diagnosed as something entirely different. For instance lupus. Which requires some serious and specifically elevated blood levels. But he wants to check on anything that he things could also cause flushing in my case, as my last blood tests for all this date back to 2011. He said that lupus is very difficult to diagnose. Blood levels (ANA) not only have to consistently be sufficiently elevated, but also have to match clinical symptoms. And on any one day your bloods could be near normal unless you are flaring; doc said that these blood tests can often be downright unreliable, as the values go up and down. That you could take several ANA tests and some will eventually turn out positive. But that does not necessarily mean anything. Some of mine were negative in the past, others mildly positive at 1:80. Borderline positive he called it, but not if the previous and next test are negative, haha. Oh what a puzzle... Apparently skin biopsies can help there, but I'm not allowing anyone to take a piece out of my poor frail rosacea facial skin. Anyway, I'll hear the outcome on February 11th so a bit of waiting left. OH, and I am weighing too much! Doctor said mirtazapine/remeron (which I use successfully to take off some of the flushing problem) is renowned for this. "You can not eat or diet against it" he said. But nevertheless.. I managed for some time to keep weight in check while taking these weight adding meds (high dose of Xyzal antihistamines isn't helping either) by eating only meat and vegetables and fruits and very few carbs and no sugar, and on top by walking 10 kilometers a day, but lately I have screwed all of that back again :( Food tastes so good and 10 km is a long long stretch. Have to go back to the old formula though, all that belly fat is not good in many ways. Bleh... it's all so tiring.
Otherwise I've been so so the past week. I could keep my flushing under some control during the day, but it flared up badly when I visited a friends place (too warm there) and another evening my mothers house (not too warm but she has lots of flowers and scented stuff in the house and her small dog, which seems to trigger me more than cats nowadays). I ended up with a burning hot flushed face both evenings, which took a few hours of cooling with cold pack to calm down. Coldpack wrapped in clean t-shirt, only patting it on my cheeks now and then with a fan running too; careful for overdoing it and frostbite! A friend with flushing problems also wonders, like me, if the flushing could be due to erythomelalgia. This person has very long lasting flushing episodes however, lasting days up until a whole week (with no respite) and severe burning pain. In contrast, my flushing episodes usually last a few hours tops. Then cool down again, usually by me cooling them down, or sometimes just by themselves, like a candle running out of steam. It is possible to have longer lasting redness (inflammation, background redness) though, for instance when I had a bad case of sinus infection and bronchitis, then my entire cheeks were red and inflamed looking even when I didn't flush. But that rarely happens to me normally.. The issue with erythromelalgia is that the pain comes not just from the blood vessels in the face, hands and feet excessively dilating, but also from them constricting. I know a girl with severe flushing who has erythromelalgia and she actually gets better from calcium channel blockers, which dilate blood vessels also and are top of the not to use list for rosacea flushing. In her case, they help keep her blood vessels stable. But with rosacea flushing there is usually no issue of abnormally constricting blood vessels and nerves (causing the typical white pale thing you sometimes see with cold fingers). All we need to do is prevent blood vessel from excessively dilating. So constricting them with cold air, fans, cold packs, medication even is the way to go. Not opening them up. Any medication that widens the blood vessels is a recipe to flushing hell for me. I've tried many such meds over the decades, usually prescribed by curious doctors wanting to see what my blood vessels and face flushing would do then. I guess the fact I'd flare from such a med is more indicative for rosacea flushing perhaps. The doctor I saw Wednesday also emphasized to me that the chance all this is down to rosacea and IPL/laser damage in my case is the biggest one. Lupus would be a surprise finding (in the past 20 years I was always tested negatively for it) and erythromelalgia... He said I would need extreme pain from that one, and not just during a flushing flare. My face always feels uncomfortable, I can "feel" my skin being active, burning or feeling tight or crawly even. But I only get the acid-like severe burning pain when I am red or flushed. Not when I am pale with a fan running on it.
Songs of the day
I had some rough days, including a full day of traveling on public transport on Friday. All went well though, despite it being warm in the train and bus. Tomorrow I see the rheumatologist/immunologist about my burning hands and face. Fingers crossed they can help me further. I read my GP's referral letter and she wrote that she wants me checked for lupus. I doubt it is lupus though... But hopefully they can somehow check for erythromelalgia, since my hands and fingers now burn and go red too. At this exact moment, my right hand is on fire for instance, and all its fingers are glowing super red 😞 I will be seeing a junior doctor too I saw. Probably nothing will come out of it, but we'll see. I plan on explaining my abnormal flushing and burning all the time. How is has progressed, how I need a fan all the time. How IPL and laser made it worse. How standard rosacea treatments do nothing or make it worse. All my crazy flushing triggers (heat, sun, fluorescent light, perfume or strong smells, chemical scents, foods, drinks, IPL and so on). The suspicion of mast cell / allergy issues. The mild positive ANA blood tests. In fact I am busy printing out all my previous immunological blood work tests from the past, as well as my London dermatologist Professor Chu's medical letters for me. Will ask specifically about erythromelalgia, as my hands go hot and red, but never pale and white. I have been diagnosed in the same hospital with Raynaud's Disease many years ago, but I wonder now if it really is that (as my hands never go white pale in addition to red hot). And the whole extreme flushing thing might not be "just" normal rosacea either.. Every dermatologist I have seen over the years seemed to think it is all a bit extreme, this flushing and burning and redness... Perhaps my nerve endings in the face are hyper-reactive, as IPL made everything worse including the burning. Maybe it ruined my nerves in the face? Even in the train... I was hot and burning badly in my face but when I checked in the mirror I wasn't even that very red. Which is the exception to the rule actually as usually I do get very red from heat. So I hope something new will come out of this consultation.. Maybe they have a new angle of looking at it.
My friend who has similar flushing symptoms, but who had hers diagnosed as lupus recently, wrote me about it: "It is very important that you need to make sure you tell DR. about all of your clinical symptoms. It could be lupus. Lupus is incredibly sneaky for years and years. My hands and feet do the burning and the red and white. My skin can burn and be pale. I’m getting another MRI actually, checking for MS as it is apparently confused with lupus. The impact of a correct diagnosis is crucial. Without being on the right meds, the inflammation kills us. Tell him/ her everything. You don’t have simple rosacea. It has slowly become whatever “IT” is. I look back on my IPLs and know they put my problems on the fast track. But the DNA was already there."PS. Be thankful you have the Meows 😊
Talking about the cats: I had to be away from home and a neighbour looked after the cats. One of them, Igor, had urinary tract issues a week and a half ago. Took him to the vet, who worked 2,5 hours on him. Because Igor has been a shelter cat before I adopted him, he is easily spooked and afraid. The vet was wonderful and identified the problem right away. He said that some cats have not spent enough time with their mother as kittens, and can have behavioural issues due to that. Mother cat teaches her kittens boundaries, reinforces them and keeps them confident usually. He said he could identify the cats who lacked their mother near at a young age, because of their unpredictable responses to a veterinary check up. A month prior I had seen another (emergency) vet when he had blood in his urine and she was young and ... had a different methodology.. She called another vet in who was armed with heavy gloves and they tried to pin Igor down to take his temperature. He was like a wild tiger, screaming, roaring, hissing, biting. They had to chase him all through the vet's office until enough was enough. So this time, Iggy was sedated. It was difficult to see him so afraid but once the calming drug worked, the vet could do a full body check up. Igor seemed to have sore back legs and I suspected another urinary tract infection. But the vet first ruled out broken limbs or a bowel obstruction. Then he took vials of blood and tested the urine I had brought along from Igor. He had a high white blood cell count and his urine was full of specific crystals, called struvite crystals. And it was too concentrated and had the wrong PH acidity. He was given antibiotic jabs and anti-inflammatories. Also special cat food and a strict diet. He is becoming just like me in that respect. He also has to drink a lot of water, and we're supposed to put water bowls on different spots to encourage him to drink more. He did improve a lot in the next days. No longer lethargic and grumpy and with pain when moving around. he started to play again and got his energy back. But now the neighbour had him in house to keep an eye on him as I couldn't take him along with me in the train.
And still... despite this 5 star treatment by the biggest cat lover after myself, I was worried :D Bleh.. Will she keep the doors shut? Will she check if Igor is sleeping and not passed away? Will she check if he is not having a fever again and isn't in pain with his back legs again? I did tell her all that and couldn't help emailing her briefly about it another time too... (me = Crazy Cat Lady). I tried to make it sound relaxed, but I'm sure she could imagine me clenching my jaws while typing. Probably good I never had children as I would worry day and night haha. Might have become one of those controlling helicopter mummms I always dismiss.. Saturday I went into town with a friend, which was nice. We did some shopping and had a drink somewhere. Sunday I stayed home and tried working on a work deadline. But I was very absent minded. In the evening another friend, came round for some tea and a chat. I normally have the heating on 16 degrees Celsius in the house and run a fan on my face, but because the friend is easily cold, I put the heating on 18 degrees. Felt very warm to me, but she was shivering! Had to give her a thick cardigan of mine and a plaid over her legs. Luckily she wasn't bothered and we had a nice evening. Last night I went out with my sister to eat tapas in town. That also went well, despite it being medium warm in there. I was a bit flushed but nothing too bad. I avoided the worst trigger foods (in my case spicy food and pork meat and of course alcohol) and ate dishes like goats cheese in puff pastry, carpaccio, vegetarian pizza slices, tuna and baked potatoes. All small little dishes and you can order as many things as you want from a menu of 55 items. We had a very good time. Always nice catching up on little Tim, family life, love life, work, health and the usual female topics. In the fall of next year, our mother will turn 65 years old and to celebrate, she is taking us all for several days to Valencia, in Spain! It will be around my own birthday (the big FORTY, brrrrrr), so end of October and early November. It should be nice weather then but not too warm. I am hoping for 18 degrees and a weak sun. My mum took us all to New York for her own honeymoon in 2006 and that was a fantastic trip, so we hope to have some good family time in Valencia now this year. My mum booked a fantastic palace of a hotel in the old town, with wooden parquet flooring and all that jazz. My sister is also saving for her wedding, which she wants to be some white beach fairy tale. On a Dutch beach, mind you, on one of our northern islands, but it turned out that renting a beach club for 50 or so people is something a lot of people want these days, and thus will cost you well over 10.000 euro's.... Shocking. But very hip. In her place I would probably save myself a good portion of that money and rent some old barn and do it up and hire a good band haha.
Oh, and how cool is this school?
Songs of the day
February 25th 2019My doctor called back and the allergist is putting me on Mast cell activation Syndrome medication for 5 weeks to see if it improves my flushing problem. Three meds; montelukast (a mast cell stabilizer), ranitidine (H2 antihistamine) and a H1-antihistamine (I can stay on Xyzal for this). Fingers crossed it works. I tried montelukast in the past for a short amount of time but will restart it now together with raniditine and Xyzal and then give it 5 weeks to see what happens... Doc told me that regular antihistamines help only a little bit for mast cell related flushing and that specific mast cell meds are needed (IF mast cells are involved..which we will now test out). These three meds should knock those mast cells down solidly, according to doc. So let the battle begin.... It is always stressful however to start new medication, as I am so sensitive and can actually flush worse from many medication, but will have to bite through this one. Who knows! I had already decided before that, that I would give montelukast another try. In this blog post you can read more about this medication for facial flushing. So I'm glad the doctor agrees that it might help a bit. Flushing of the face in general can have many different causes. For one person it can be down to a histamine related response (underlying allergies or mast cell disorders), for another it has to do with too many blood vessels in the facial skin, which dilate too easily and are not functioning properly. IPL or laser can take them out but come with all their own risks.. I wished they could just strip the excess or malfunctioning blood vessels out of our faces, like they do with varicose veins in the legs. And for another, the blood vessels dilate due to low grade underlying inflammation elsewhere in the body. In that case the immune system can be involved, and an auto-immune factor can play a role. (there are many medical conditions that cause flushing of the face, read this blog post about this). But it depends on your subtype and then again it can differ. And even subtype 2 rosacea with demodex mite issues is indirectly linked to the immune system overreacting... My auto-immune activity is mildly elevated, the latest blood tests revealed again. Not very high but enough to go with the low grade inflammation I also have, which can just be a small smoldering fire for my rosacea redness, inflammation and flushing. Not every immune response and inflammation shows up like a big fat exclamation mark in such tests, it can be low grade too. Eczema for instance is also linked to an immune response but wont give a positive marker in blood tests. It's all very frustrating that no actual concrete treatment is available (all in one pill ideally!) to tackle this whole thing. Having a burning red hot face just sucks. So, flushing can have many possible causes but with auto immune activity, there is inflammation that is being generated by the body itself which does seem the case with rosacea too. But scientists still haven't found the exact reason and cause of rosacea so until that, its not entirely certain it's immune related. But my bet is that it is in fact immune related in many cases. Just like most inflammatory skin diseases are, other than bacterial infections. And so foods can affect your rosacea possibly. As some foods are pro-inflammatory to the body and others can be anti-inflammatory. That one is trial and error.
The past weeks I've had HORRENDOUS flare-ups. I think it is the cold, my cold urticaria somehow worsening matters and yet, there have been early spring days too and there are lots of pollen in the air. Which always trigger my flushing, every spring... I also scrubbed my skin gently 10 days ago and ever since the flushing and redness are through the roof. But I had to, as so much dead skin builds up over time with me. I clean my skin obviously, but Professor Chu explained it to me as follows; my rosacea skin has a non-functioning skin barrier. Normal skin automatically sheds dead skin cells from the upper skin layer. Mine somehow stacks them up and does not let them go. I need to scrub after some months to get it off. But I rather wait as long as possible with this, as the dead skin layer serves as a buffer and protective layer for my face and rosacea. it makes me look more normal in colour, as opposed to red. It also makes me less easily flushed. But there comes a point where you just see the dead skin sitting on top of my face and it has to go.... So right now I'm super red. And on top of that, I also missed my period (not preggers!) so am having some hormonal disturbances which has set my face on fire. Its miserable, I am constantly cooling but nothing helps. Need to stay calm and get through this until face calms down again :( Normally I can keep my flushing and burning under some sort of control by using anti-flushing medication, sleeping with a small fan blowing on low, sticking to my rosacea friendly diet and ignoring the one week before my period of flushing. This probably because in that week, progesterone levels are high, which flare me up (you can read more on the effects of the female hormones progesterone and estrogen in this blog post). I had a scare when missing a period, and it fairly sure now that my hormones are all over the place this month. Fingers crossed all will be back to normal soon. But eventual menopause is hanging over my head like a dagger.. its frightening. So I have been burning and flushing up constantly lately... bleh.. Fans, cold packs, windows open, trying to sleep it off. I was not sure what exactly was going on (probably a mix of cold/ pollen/ stress/ hormones and then some). Face was lighting up like a torch and my face swelled up like I was a chipmunk on steroids (I really am so so swollen in these photos, its embarrassing to even post them, despite this being a bloody rosacea blog!). Usually these waves do die themselves down in time so I just need to ride it out. In fact, the past two days the intensity has gone down a bit, so I am carefully optimistic the flushing may die down soon. These pictures are taken when I could be bothered stepping away from the cooling devices and are not even 1/10th of what it really looks like at its worst. Compared to photos of last summer, to see the colour difference. 
I also found some old photos, will add them below; taken by my painter friend; I stood model for a ceiling painting. It shows the blue sky with angels/goddesses seen while looking up to them. I modeled for one of these figures (more so that the painter could see the right perspective and proportions of a female body when viewed from the ground looking up haha, it was a technical thing).
I watched this documentary about people that have Bill Murray encounters. Apparently he likes to do impromptu engagements with people. It was a good documentary. Showing how he likes to live in the moment and how these interactions really made a lasting impression on the people he engaged with. My friend told me about it, that the director/narrator of the story tried to get Bill Murray himself in the film, but couldn’t get a hold of him. So the movie is just the telling of people’s stories with him and shows some footage of these tales. The director did eventually get to see Bill at a baseball game. He went up to him, as some others did.. They asking for a picture.. it was the perfect time to pitch his documentary; to tell Bill what he was doing, but he decided not to. Just taking the picture was enough. The movie maker initially thought that he needed more, when he started making the movie (like his own Bill Murray story), but then realized that he had his own story. The making of the movie was his story, and simply walking up to Bill himself and asking for a picture was enough. He didn’t need to have a sit down with him, or have any type of special moment other than just that; seeing him at the baseball game and getting a picture taken with him after. When the people who feature in this movie had their own encounters, Bill would be there and then when he left, he just left. Totally in the moment. No dragging things out. Another lady was trying to chase him down during a movie festival. She was supposed to interview him..but she could never catch him. One moment he was there, the next Bill Murray just left without as much of a sigh. No fuss. Quite a mysterious way of behaving, especially for a 'celebrity'. At first she was disappointed. Then she realized that she did see him. A lot in fact, and that by chasing him all over the place she ended up seeing him during many different interactions with others. But on top the film maker also got to see some cool stuff that wouldn’t have been seen if he would have just talked to Bill in the beginning, and then had left the festival. So sometimes what we are looking for isn’t what we are actually looking for, and by paying attention to that, we can actually catch something really great in the process sometimes.
This trailer of The Bill Murray Stories made me laugh. All these guys go like "And I was like, and she was like, and then I saw... OH MY GAWWWD.... yes, it was Mill Murray". And what fun that must have been not just for the unknown people but also for Bill himself. Stepping into all these different narratives. Its like I used to wonder when sitting in the train, what all the backstories were of the people around me. You don't know them, they don't know you, soon one or the other will get up and step out and that was probably the only fleeting, random connection you will have ever had with them. Maybe if you had gotten to know them, they could have turned out to be potential friends for life, or lovers, or who knows what else. Bill could taste some of that.
Songs of the day
I've been a bit obsessed with both these songs at the moment; must have watched the video clips a few dozen times already. Love love love the Azerbaijan / Russian style street dancing in the first video and the faces of the people there. And the second song is just outstanding, I like this live version more than the studio version. She gives me the same chills as listening and watching Amy Winehouse once did. Have to put down my work actually when it is playing, to watch her facial expressions and cool swagger. Then a disco dance-off that always makes me smile and a great banjo duel song from a movie I watched recently and really enjoyed, 'Deliverance' (1972).
February 13th 2019
I got my results from hospital tests. 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."
Doctor: "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.
Me: "Ok.."
Doctor: "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."
Me: "I do use a high dose of antihistamine medication, could that have influenced the outcome slightly, in theory?"
Doctor: "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."
Me: "So you would have been able to measure it. Ok.."
Doctor: "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."
Me: "And the ANA blood levels?"
Doctor: "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."
Me: "So it can also give a false positive result?"
Doctor: "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. "
Me: "So no lupus or something; nothing with a specific speckled pattern or anything under the microscope."
Doctor: "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."
Me: "Yes it sounds like it really is all down to my blood vessels being over-reactive."
Doctor: "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."
Me: "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."
Doctor: "Yes that is very possible."
Me: "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?"
Doctor: "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.." (So basically he seems to describe the symptoms of Mast cell activation Syndrome to me).Me: "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?"
Doctor: "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."
Me: "Oh that would be nice. To see what happens then."
Doctor: 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. So ANA was positive meaning 1:80 titre but that is low for auto-immune diseases. There is some auto immune activity but it is low grade inflammation and not lupus or a disease like that. Too low to treat, but not negative so possibly helping speed the low grade inflammation fire along. I also have lymphocitaire colitis also and that's the same thing; got a couple of coloscopy surgeries and they always confirm the same thing; colitis but low grade so not like Chrohn's disease with visible ulcers. But the lining of the bowel is in my case a bit inflamed. You need a miscroscope to see it (they take a biopt) but these low grade inflammatory substances do travel through the body and can cause or worsen inflammation in other organs, like the skin, in turn. So every blood test seems to show the same image in my case; immune system isn't fully working as it should but gives off low grade inflammation which blood markers also show, but nothing too high to worry specialists... But its not helping my rosacea one bit! 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."
Mast cell activation Syndrome
It is also possible that someone who flushes a lot does not in fact have mastocytosis (or anything other than rosacea and faulty functioning blood vessels), but instead Mast cell activation Syndrome. Mastocytosis causes too many mast cells in your body, but Mast cell activation Syndrome does not create statistically more mast cells in the body, but instead makes the normal number of mast cells malfunction, being hyper-reactive and causing symptoms such as flushing, hives, burning feeling, easy bruising, itchiness, lightheadedness/dizziness, diarrhea, headaches, pain and redness of the eyes and brain fog. To name a few symptoms (check the rest of the possible symptoms out here). This is what my doctor thinks I have. My tryptase blood test came back negative, so I don't have mastocytosis. But he does suspect a histamine component to my flushing, as I flush from foods high in histamine, from pollen, from perfume and many other triggers that can be linked to histamine release in the body - which then in turn dilates the blood vessels. I am currently trying medication aimed to control Mast cell activation Syndrome: Montelukast (Singulair), ranitidine and Xyzal.
DAO deficiency
DAO deficiency means there is not enough of the specific digestive enzyme present in the body, which is responsible for breaking off the histamine that is in food. Diamine oxidase enzyme or DAO is located in the intestinal mucosa mainly, and starts working during the digestion of food. When there is an alteration in the metabolism of histamine and there is not enough DAO activity, the imbalance between ingested histamine and histamine released from the storage cells leads to histamine accumulation in the blood, which causes health symptoms such as flushing, sneezing and itching, but also possibly: migraine, headaches and/or dizziness. Irritable Bowel Syndrome (diarrhea, constipation), Crohn disease, stomach pain, nausea and/or vomiting. Hypotension, hypertension and/or arrhythmia. Hives, oedema, atopic skin, eczema and/or rach. Nose congestion, rhinitis, asthma and/or sneezing. Muscle pain, fibromyalgia and/or fatigue. Bone pain. It has been observed that most patients with low functional DAO activity present other related symptoms, especially migraine. 20% of patients experience 1 or 2 of these associated symptoms, 41.3% of patients experience 3 or 4 of these symptoms and 33.8% present more than 5. Migraine is always the most highlighted syndrome when interviewing the patients due to its disabling character. With DAO deficiency, unlike with a food allergy, the occurrence of symptoms or adverse effects is not linked to the intake of specific food; by contrast it can be related to a wide variety of food with different histamine contents (even to foods with low histamine levels). A special blood test can detect the DAO enzymatic deficiency. Once confirmed, the treatment consists in a diet low in histamine and other amines that enhance its accumulation.
Y-gwair wrote: Quote Originally Posted by lilyian. "If you did actually have a mast cell problem, it is easily controlled with prescription histamine blockers. Best thing to do is to get checked out my an allergist. People with these illnesses don't really have allergies, but the source of the problem is still mast cells which are what cause allergy problems." This is not true, H1/H2s will only control SOME symptoms caused by release of histamine (like itching), but mast cells actually produce about 60 different vasoactive substances which antihistamines have no effect on. It's true that mast cell activation is not a true allergy, but there are still many allergy doctors that don't understand this and only test the limited parts of the immune system that they know about. Also many don't understand the difference between mastocytosis (which is where your bone marrow produces increased number of genetically altered mast cells) and mast cell activation (where you have a normal number of mast cells which have become abnormally over-reactive). The kind of doctor you need to see with these disorders is an immunologist specializing in allergic disease. Ideally they will test tryptase (which is a substance that stimulates the production of extra mast cells in mastocytosis), Diamine Oxidase, which is an enzyme that breaks down histamine, histamine levels in urine/blood. They also look to see if you vitamin D levels are low, as this is also a marker for high circulating histamine. If you are in the US, they will also test for prostaglandin D2 and leukotrines. They should also do a very detailed investigation of your immune system, breakdown of all immunoglobulins, rheumatological markers and many other relevant things. After quite a few misdiagnoses, I've finally found the true reason for my flushing, which is deficiency in Diamine oxidase, linked to mast cell activation causing high levels of unknown vasodilatory and neurological irritant substances. If I'd listened to my idiot dermatologist, I'd still be mucking around with clonidine and betablockers, both of which were making my condition worse. Doxepin is a tricyclic, which are a group of medications that cause mast cell degranulation, along with many, many other common medications including virtually all painkillers except paracetamol."
Something that made me laugh out loud (yeh... cat related again haha). Here my cat Piotr was not amused. I went for a walk and he had to stay inside for a little while. Look at his gremlin drama faces when he realized he wasn't going out 😄😄 (Not sure this post needs a trigger warning haha, but just know that he is treated like a Royal and does not deserve any pity 😄).
A friend wrote some comments to go along with it. "Come baaaackkk", "You go without meeee??" "How dare you, turn around RIGHT NOW!!", "How dare you leave me", "You'll pay for this, my little pretty!", "Hey, call the firemen and tell them to bring the tuna treats." "Finally acceptance has set in". "Still sulking". "Incredible what humans do to poor cats". "Oh f.... I must wait then."
More cats... two posh English acquaintances visited the house and due to the cold all 6 cats were rolled up in the living room and around the wood-stove, of which 5 are ginger. The lady shouted out "Oh dear, they are all MARMELADE!" Made me laugh out loud. Will stop calling them gingers now and start calling them 'marmelade', tata.. Cheerio! And over the weekend a black cat came onto the football field! A commentator made a funny audio clip with it on the radio. I combined some online videos of the event with the radio commentary :)
My skin has been so so. Quite a lot of background redness currently. A few cold urticaria bumps. Bit of flushing. Had also another shock. Maybe TMI, but missed my period this month. Not pregnant (make very sure that doesn't happen) but am now worried I am already heading to early menopause perhaps. I had a lot of ob/gyn research done in hospital back in 2010 due to fertility issues and early miscarriages, and as usual they didn't find much wrong, other than that I have low ovarian reserve. So less than normal storage of eggs. That was when I was 30 and I'll be 40 this year. So who knows, they did warn me for premature menopause at the time, due to a low level AMH: anti-Mullarian hormone. In general I am petrified about menopause, and what hot flashes and out of whack hormones can do to my poor face. I have been reading up and perhaps I just missed an ovulation this month, I don't know. It is what it is, all might be back to normal next month for all I know. Anyway, as I said TMI but it was another worry on my mind all week. Have had a shitty anxious week. I have been avoiding the cold outside air, and the heating is on in the house (and even the bedroom, bleh) and I only go out when its mild and not too windy.
It all started with 9 Knights Templars, who were French and one Flemish. They would later, around 1300, grow into a group of around 20.000 members; armed men, dedicated to God, guides and protectors to pilgrims on their way to Jerusalem and holy places. And fighting the enemies of Christianity and Jerusalem. But they became a major military force, answerable to the pope (and not the king of Jerusalem, so independent in a way). As long as their policies were in line with the worldly kings of Jerusalem, all was fine, but when disagreements started... And they had been acting closely with the French kings and their crusaders, but they had also close relationships with the kings of England incl. Richard the Lionheart. They were strict too (following monk-like rules of chastity, obedience and piety) as well as being bloodthirsty warriors and quite militaristic. Gods personal militia. And a secret society. First glorified for being on a holy path, and then accused for all sorts of evils. The Templars had a relationship to the kings of France and England. They were heavily concentrated in England and France. Their main battleground was in the holy land and Spain, but they maintained a vast network through western Europe. They initially wanted to take back Jerusalem, which was in the hands of Arabs and Turks since the 7th century. Which was symbolic but there was also the looming threat of Islam and the Turks and Arabic heading towards Europe. Jerusalem has been a sacred place for no less than 3 religions; it has a sacred spot for the Jews because that's where Abraham was about to sacrifice Isaac in the book of Genesis. It is a sacred place for the Christians too, because it is the spot where Christ was crucified and it is sacred to Muslims because that is where the prophet Muhammad visited and Jerusalem was the first Qibla -- the place toward which they turn in prayer. So there was a lot of interest all round to possess this place. In 1095 Pope Urban II makes a speech, and tells Christians everywhere to rise up against the Muslims in the Holy Land. Those who had become robbers would now become Knights. Anyone could go there to fight for Christianity, whether they were knights or riffraff. And to get as many fighters going, the pope gave all sorts of extra's; debts would be dissolved, criminals would be let out of jail and removed from their crimes. Rapists, murderers, thieves. This did ensure that the first groups of fighters were hardened tough no-jokes.
Three years of slaughter followed, where thousands of western Europeans headed to the east, helped by fighters from Byzantine (the eastern-European branch of Christianity at the time), heading towards the Turks, Persians and Arabs in Constantinople. And they were winning. In 1099 they reached Jerusalem and took it back. But not without a good fight. Horses were said to wade knee deep in blood. They slaughtered everybody there, whether they were Muslims, Jews or Christians. Then they settled in the Temple of Solomon. And this victory set up the large scale crusades. Many Western European Christians wanted to travel to Jerusalem to see it for themselves. But they forgot that the fighters had left town again once they had captured it, so there was no army to defend it now. On the road crusaders would be robbed at ever turn. Around 1119, an initiative was set up therefore to protect these crusaders: The Knights Templar's. A wealthy Frenchman set it up, Hugues de Payens, who had also fought in the first crusade. He wanted to protect people traveling to the Holy Land, with knights who were living like monks, but were protecting the roads. Although this version of events is now questioned by some scholars. For instance, the first written evidence of them appeared 70 years after the date of 1119, which makes it dubious if that date is actually correct, given the long blip between written proof of it. And they also doubt that protecting travelers was the only real reason for the Templar's to go east, because there were only 9 of them initially, who could have never protected all those crusaders visiting Jerusalem. And they were also never mentioned in the first several decades of their existence; nobody wrote about them protecting walkers on their holy way. So were it perhaps also promises of wealth, riches and power that got them really moving? Around the year 1118-1119 the Templars moved to Jerusalem and then weren't heard of for several years. They settled in Jerusalem, on the important Temple Mount. Archaeologists have found extensive tunnels under the temple mount, with Templar weapons and artifacts in it. And now it gets conspiracy-theoryísh because the Templars are said to have been digging for specific things. They are said to have possessed the original cross where Christ was crucified on, for instance. As well as secret relics, which were buried and hidden under the Temple mount. When the Jerusalem was invaded by the Romans in the year 70 AD, the Jews had buried treasures underground around that time, including gold and precious metals (200 tons of gold and silver were described to have been hidden by the Jews themselves). Which has never been seen since. A good chance that the Templars were the one who unearthed it all, and that that is why archaeologists found these many tunnels under the Temple Mount.It is possible that they were digging for all that by order of the Christian church. Because by now, around the year 1200 or so years after Christs death, the relics surrounding him had become a big industry. The crown of thorns, a piece of the true cross, would have had great spiritual power as well as mystical power. And then the best of the best would be the mythical Holy Grail. - (Site note: Do check out Monty Pythons movie about it, it is hilarious - (It is not even sure what the holy grail exactly is BTW. Some think it is the chalice that contained the wine, which Jesus said was symbolizing his blood. But there are other theories that the grail would be something else. A silver platter, a secret book, or the holy blood line of Jesus and Mary Magdalene and perhaps they had a child nobody knows of. (see the books of Dan brown for this). The grail has been said to have been all sorts of things.).
It is also a fact that at some point, the Templars, all 9 of them at that time, rushed back to western Europe at great speed. Had they found the treasures they might have looked for during their tunnel digging? Because when they came back to Europe in 1128, these Templars became very powerful and rich in a short space of time. Whereas they had been very poor initially, so poor as that their symbol was of two men sitting on one horse. But they were not revered by everyone; some people didn't trust such bloodthirsty Monks, having such military power. Others loved them and said they were the most feared fighters, because their soul was protected by the armour of faith and his body by an armour of steel. So they were doubly armed and shouldn't fear anyone. Late 1100's the Templars got smart with PR and start asking for donations or fight-worthy sons all over Europe. Money, lands and men, to support the kingdom of Jerusalem. And despite the small scale PR they were quickly being given a lot of land and money and men. The king of Aragon for instance stated in his will that he would leave large chunks of Spain to the Templar order. Which was in itself more PR for the Templars. They attracted and trained the most ferocious fighters. They were picky too; a Templar warrior needed to be of noble birth, of legitimate descent and you already had to be a knight. You also had to give up everything you owned to the organization... In 1177 the Templars lived up to their fierce reputation in
"Strong warriors on the one hand, and monks on the other, waging war with vice and deed. A body of man need no fear. These man have no fear of death, confident that in the sight of the Lord, they would be his martyrs."
They also thought out smart ways to make people walking the pilgrims trail to Jerusalem safer from robberies; these crusaders would leave all their possessions in charge of the Templars. And in exchange they would receive a note enciphered. Every time you had to pay something on route, you went to a local Pilgrims office and showed the letter and they would pay for everything you needed. And by the time you came home you showed the charge card they made out of your letter and told you if you received money back or had to pay some extra for made expenses. A Medieval American express card :D Robbers along the way could do nothing with the letter, as they wouldn't be able to crack the intricate Templars code on it. This system was the basis for the modern banking system by the way. Including their high profile loans; they lend to emperors, priests and kings. They charged rent. (Interest was forbidden in the catholic world of those days, but by calling it rent they could work around this). And the church looked the other way, as a concession to the Templars, despite knowing their rent system was basically the same as raising interest. And then the catholic church gave the Templars even more privileges; they were absolved from taxes, allowed to freely cross borders, and they were under no-ones authority and jurisdiction other than the pope himself. Which was exceptional in that time. Why? Officially as a thank you for them defending the crusaders. But unofficially there was probably something else behind this lawlessness status of the Templars. Hush money, instead of a reward. The sweetheart deal might have been struck because the Church didn't want certain information to get out. One theory is that the Templars had found extraordinary riches and relics and scrolls under the Temple of Solomon in Jerusalem. And there might have been evidence found that didn't correspond with the Catholic version of religious events. For instance proof that Jesus had a relationship with Mary Magdalene and even had a child. Or they could have found proof of a different story of what happened with Jesus and the apostles, something the Church didn't want to come out. But either way, it allowed the Templars to become bigger and more powerful. They grew and grew in importance, building castles and strongholds, running farms and vineyards, factories, imported and and exported products; anything that would make money. And they would set up intricate hierarchies within their regions. Only a small segment of these Templars actually were fighting battles at this point, some say not even 5%. And the rest was running the system smoothly, allowing for money to come in and part of the infrastructure that kept those knights fighting.
On Friday the 13th he had the head Master and most of his best knights arrested, based on a long including... worshiping a black cat. A new Templar was said to have to undergo humiliating initiating rites, including kissing his subordinates on the mouth and spitting on the holy cross. Heresy was a very serious case and the only way for absolution would be a pardon from the pope. Which he did. Nevertheless, Templar chief Jacques de Molier was given a staggering total of 104 charges of misconduct, all building up to the main charge of heresy. Which was devastating to the Templars, as they were set up to protect the Faith, not to betray it. So this charge had the power to destroy the Templar order. The Knights had given their whole life to the Templars Order. Sitting pope Clement the 6th was also attacked by Philip and his cronies, spreading false rumors about the popes heresy and assumed secret relationship with a very beautiful woman, the wife of a French nobleman. Clement wanted to go to the Vatican where he felt safer, but Philip prevented him from leaving France. But Philip wasn't going to give up and blackmailed the pope some more. Either he would indict the Templars, or Philip would break France off of of the Roman catholic church and create their own religious church. The pope and the king battled for the power here and the pope ultimately didn't want to see his church broken up. So in the end he gave the order for the abolishment of the Order of the Knights Templars. And Philip eventually replaced the Pope with a pope who he knew from childhood, and who was like a puppet in his hands. Jacques 
The Templars were said to be very rich. They took in endless donations and had to pay no taxes. They
Cool history :)
Songs of the day
I just want to say thank you for letting us into your life. I also have severe flushing and burning, and at times it seems as if it is all the time. I have tried everything pretty much, at the moment I am on LDN, whilst it is not a miracle, it does help. I also take singulair and a high dose of magnesium. But even with that I walk around with a fan. I try to practise gratitude for all that I am given but I would still like to not feel my face.
ReplyDeleteTake care
Thank you for your comment Limeyts, and I am sorry that you also suffer from this awful condition.. It can be so difficult to treat, the burning and flushing :( LDN I still need to start, will try it soon. Magnesium can cause flushing for some people, I hope you are not one of them.. So sorry you also have the whole fan carrying issue. I'm in Valencia Spain now for a few days with family, a birthday present but it is unusually warm here, 28 degrees and it's daunting to stay cool. Have been flushing pretty much since arrival here. Am using a neck fan though, but it's still a big ordeal getting through such holidays with the flushing and burning nearly constantly. I hope you have found a way to keep your skin calm when at home at least.
DeleteBest wishes