"He who asks a question is a fool for five minutes; he who does not ask a question remains a fool forever."
(no idea who the author is)
Many whys, whats and hows in this easy to read, and a very intriguing paper by a curious, and I believe a bit angry, parent (published March 2015)
An n=1 case report of a child with autism improving on antibiotics and a father’s quest to understand what it may mean
The author, a parent of a child with autism, describes an n=1 case in which his child's autism symptoms dramatically and rapidly improved following administration of a common antibiotic. The author asserts that this finding is not unusual in the autism population and that, when combined with prior recent medical research, suggests that a link between autism and the microbiome in some children is not just plausible, but in fact likely for some meaningful percentage of cases. The author argues for increased funding for a more thorough examination of links between autism and the microbiome and poses a series of questions to be further examined in future research.
And for a good measure, an article about some cancer questions... (January 2015)
Eight-year-old girl Camilla Lisanti suggests possible cancer treatment to her scientist father over the dinner table
An eight-year-old girl may have come up with a treatment for cancer while chatting to her parents over the dinner table.
Camilla Lisanti, from Manchester, was eating dinner when her father Michael – a cancer research scientist – asked her how she would cure cancer.
The eight-year-old child thought for a moment and then suggested using antibiotics, “like when I have a sore throat,” to her sceptical parents.
Professor Lisanti and his wife Federica Sotgia, a husband and wife cancer research team at Manchester University, tested her theory at their lab and were surprised when several cheap and widely used antibiotics destroyed the cancerous cells.
Some antibiotics stop cells from making mitochondria, which supply cells with energy.
Cancer stem cells, which create tumours and keep them alive, often have high numbers of mitochondria.
Their research showed that four common antibiotics, which can cost as little as six pence a day compared to some of the latest drugs which can cost hundreds of pounds, killed these stem cells in samples from breast, prostate, lung, ovarian, pancreatic, skin and brain tumours.
Crucially, the antibiotics did not harm healthy cells. Professor Lisanti now believes that antibiotics could prove to be an inexpensive and safe method in treating cancer, thanks to his daughter’s suggestion.
“She has heard us talk about cancer a lot and we thought it would be fun to ask her what she thought about cancer therapy,” he told the Daily Mail.
“I thought it was very naïve to think you could cure cancer with antibiotics but at the end of the day Camilla was right. She usually is right about things. She always has a snappy answer that makes sense,” he said of his daughter, who at the moment wants to go into teaching.
Of course, let's not forget that...
Although promising, the research – at the moment – is limited to lab results and needs to be tested on people.
Dr Alan Worsley, Cancer Research UK’s senior science communications officer, told The Independent: “There’s no indication from this work that these particular antibiotics would kill cancer cells in patients, or what sort of side effects there might be. Some antibiotics have been known to have anti-cancer effects since the 1960s and are a well-established part of cancer treatment today, alongside other chemotherapies.”
Oh, the song for today :-)
I'll be the first to play your game...
ReplyDeleteWHY do antibiotics kill cancer cells but not healthy cells?
You are asking a perfect question!
DeleteThe paper by Lisanti group says:
Antibiotics that target mitochondria effectively eradicate cancer stem cells, across multiple tumor types: Treating cancer like an infectious disease (2015)
"Here, we propose a new strategy for the treatment of early cancerous lesions and advanced metastatic disease, via the selective targeting of cancer stem cells (CSCs), a.k.a., tumor-initiating cells (TICs). We searched for a global phenotypic characteristic that was highly conserved among cancer stem cells, across multiple tumor types, to provide a mutation-independent approach to cancer therapy. This would allow us to target cancer stem cells, effectively treating cancer as a single disease of "stemness", independently of the tumor tissue type. Using this approach, we identified a conserved phenotypic weak point - a strict dependence on mitochondrial biogenesis for the clonal expansion and survival of cancer stem cells. Interestingly, several classes of FDA-approved antibiotics inhibit mitochondrial biogenesis as a known "side-effect", which could be harnessed instead as a "therapeutic effect". Based on this analysis, we now show that 4-to-5 different classes of FDA-approved drugs can be used to eradicate cancer stem cells, in 12 different cancer cell lines, across 8 different tumor types (breast, DCIS, ovarian, prostate, lung, pancreatic, melanoma, and glioblastoma (brain)). These five classes of mitochondrially-targeted antibiotics include: the erythromycins, the tetracyclines, the glycylcyclines, an anti-parasitic drug, and chloramphenicol. Functional data are presented for one antibiotic in each drug class: azithromycin, doxycycline, tigecycline, pyrvinium pamoate, as well as chloramphenicol, as proof-of-concept. Importantly, many of these drugs are non-toxic for normal cells, likely reducing the side effects of anti-cancer therapy. Thus, we now propose to treat cancer like an infectious disease, by repurposing FDA-approved antibiotics for anti-cancer therapy, across multiple tumor types. These drug classes should also be considered for prevention studies, specifically focused on the prevention of tumor recurrence and distant metastasis. Finally, recent clinical trials with doxycycline and azithromycin (intended to target cancer-associated infections, but not cancer cells) have already shown positive therapeutic effects in cancer patients, although their ability to eradicate cancer stem cells was not yet appreciated. "
OK, I got the questioning part down, let me try the "Art" part:
DeleteDo you remember the convo we had where Art Ayers said:
"But the goal is to identify small molecules that can block critical parts of macromolecular synthesis. The experiments have already been done and are available as plant phytochemicals. Phytochemicals are small molecules that block essential functions of prokaryotes and eukaryotes, and that is why they are antibiotics.
Look at the targets of different classes of antibiotics: actinomycin, DNA synthesis; rifamycin, RNA synthesis; streptomycin, protein synthesis; penicillin, cell wall synthesis. That list can be expanded by pharmaceutical lists of side effects. (Ayers, 2015)"
As the researchers in the above paper used "one antibiotic in each drug class" this makes it even more amazing.
Antibiotics should be very specific to what they kill, ie. Gram positive or Gram negative bacteria. What makes cancer susceptible to all classes of antibiotics?
Yes, I remember, the Silkworm.
Delete"HS is the key to the extracellular matrix and differentiation, which block proliferation and metastasis. Cancer cells lose most of their metabolic capacity as it is knocked out by mutations. All that remains is selection for glycolysis and blockage of apoptosis via activation of NFkB. That also wipes out HS and turns on heparanase that degrades the external matrix and facilitates metastasis." (Ayers, 2015)
Could part of the problem be:
ReplyDelete'A unique feature of cancer cells: the fact that they make their energy throughout the main body of the cell, rather than in distinct organelles called mitochondria. This process, called glycolysis, is inefficient and uses up vast amounts of sugar.'
So while antibiotics kill cancer stem cells, they don't destroy the mature cells?
This paper is about cancer stem cells, the authors are very specific about that. These cells do not rely on glycolysis, but apparently on mitochondria. Antibiotics in this study did not destroy the "bulk" cancer cells, no.
DeleteAnother paper by this group: (2014)
"Cancer stem cells (CSCs), or tumor-initiating cells (TICs), are thought to be resistant to conventional anti-cancer therapies, and have been implicated in treatment failure, tumor recurrence and distant metastasis [1, 2]. Thus, residual treatment-resistant cancer stem cells are believed to be responsible for poor clinical outcomes in most cancer types [2-4]. Since CSCs are relatively rare and elusive, very little is known about them, especially regarding their physiology and metabolic phenotype.
(...)
Thus, the proliferative clonal expansion of cancer stem cells appears to require oxidative mitochondrial metabolism, related to the re-use of monocarboxylic acids, such as ketones or L-lactate. Our findings have important clinical implications for exploiting mitochondrial metabolism to eradicate cancer stem cells and to prevent recurrence, metastasis and drug resistance in cancer patients. "
Hmmm. From Wikipedia, the leading source of information in the world:
Delete"Phenotypic switching (a.k.a. phenotypic dimorphism) is switching between two cell-types. An example is Candida albicans, which, when it infects host tissue, switches from the usual unicellular yeast-like form into an invasive, multicellular filamentous form.[1] This switching between two cell-types is known as dimorphism.
Phenotypic switching in C. albicans include the switch from white cells to opaque cells in need for sexual mating.
A second example occurs in Melanoma, where malignantly transformed pigment cells switch back-and-forth between phenotypes of proliferation and invasion in response to changing microenvironments, driving metastatic progression.[2][3][4]"
A reference on the cancer paragraph is:
"Cancer stem cells versus phenotype-switching in melanoma"
From that:
"Tumours comprise multiple phenotypically distinct subpopulations of cells, some of which are proposed to possess stem cell-like properties, being able to self-renew, seed and maintain tumours, and provide a reservoir of therapeutically resistant cells. Here, we use melanoma as a model to explore the validity of the cancer stem cell hypothesis in the light of accumulating evidence that melanoma progression may instead be driven by phenotype-switching ..."
This is so esoteric. Antibiotics cannot be prescribed as a prophylactic for cancer prevention. They've just got too many other potentially adverse effects. It's very interesting and intriguing, but in a real world setting, not particularly applicable.
DeleteChronic infection (low grade) can result in cancer. Any chronic inflammatory process can result in 'rogue cells'.
But what about the substances that we attribute positive benefits to, yet have antibacterial properties. One is talked about often on this site. Is there a difference? Could these be called prophylactic antibiotics?
DeleteThey are not using these antibiotics as we would for a bacterial infection, they are applying them directly to the cancers in a lab setting.
DeleteI think it more speaks to what cancer actually is, which is not simply a rogue cell, but a life form that can sense, react, and hide or spread when it feels the need. The "Coming Full Circle" post was about this, in a way. researchers everywhere are now seeing cancer is nowhere near "simple", some have even started calling it an "atavistic" life (The reappearance of a characteristic in an organism after several generations of absence), calling into question that cancer actually has a place on the tree of life.
Anon's family doctor was saying what he felt was true. I can imagine more than one cancer doctor had the same thought.
Anonymous, (really, give yourself a name!) I think that there are definitely substances which can have antibacterial properites and influence against developing.... ahem, sorry Tim, rogue cells.
DeleteMitotic figures. That's what we called them as 'code' back in time. Don't know what they call them now.
We all, right now, this instant have cancer cells in our bodies. We don't develop out of control cancer (maybe) because our immune systems recognize these cells and dispatch them, supprress them. It's when something goes awry that these cells become 'atavistic' as Time says.
Cancer is dysfunctional. Parasites are usually not. They'll colonize us but, if we are not totally worn down, they won't kill us. It is not in their best interests to do so. But cancer? It's stupid and unintelligent. It kills us.
"the substances that we attribute positive benefits to, yet have antibacterial properties. One is talked about often on this site."
DeleteWhat substances?
@Gabriella
Delete"But cancer? It's stupid and unintelligent. It kills us."
Smart, despite its"stupidity"?
"Two years ago, Prof. Eshel Ben-Jacob of Tel Aviv University's School of Physics and Astronomy and Rice University's Center for Theoretical Biological Physics made the startling discovery that cancer, like an enemy hacker in cyberspace, targets the body's communication network to inflict widespread damage on the entire system. Cancer, he found, possessed special traits for cooperative behavior and used intricate communication to distribute tasks, share resources, and make decisions.
"Recent research has found that cancer is already adept at using a kind of 'cyberwarfare' against the immune system. We studied the interplay between cancer and the immune system to see how we might be able to shift the balance against cancer," said Prof. Ben-Jacob, noting a difference between the innate and the adaptive qualities of the immune system. "In the beginning, cancer is inhibited by the body's innate immunity. But once cancer escapes the immunity, there is a race between the progression of cancer and the ability of the adaptive immune system to recognize and act against it.
"What we are dealing with is cyberwarfare, pure and simple. Cancer uses the immune systems' own communications network to attack not the soldiers but the generals that are coordinating the body's defense," said Prof. Ben-Jacob."
Gemma, it's stupid because it kills. It's all well and good that it makes all these changes in the body but it's limiting.
DeleteThis is a different anon than the original comment on this thread. Call me Anon2.
DeleteGemma, garlic for example. Some claim substances like this only "kill" the bad bacteria. Is this the same answer as the antibiotics? Garlic does seem to have a more complicated profile (good side) than the typical antibiotic you get at the doctor's office.
A little birdy told me that Gemma may be away for the weekend, so won't be answering this soon.
DeleteUntil then, some thoughts: Is a fox stupid for killing a rabbit? Or just being a fox?
Anon2 - With natural antibiotics, it's more about 'signalling molecules' than outright killing of pathogens. The antibiotics you get from your family doctor are derived from natural antibiotics, but in completely unnatural doses. Most antibiotics come from the beneficial bacteria found in the soil around plant roots where they don't kill the pathogens, but say, "keep away!"
This signalling is most likely how the compounds found in garlic and other foods known for their antibacterial, antifungal, and anticancer properties work...they signal to stay away.
Pathogenic bacteria and yeast will happily stay in small colonies, just surviving, but when they sense the time is right, ie. weakened host defenses, they act by a mechanism known as "Quorum Sensing" to expand exponentially and take over the host, overwhelming its defenses.
Microbes give off Quorum Sensing Molecules (QSMs) continually to let each other know the size of the colony. Host defenses block these QSMs to interrupt the pathogen's communication network. Sounds like sci-fi!
Here's where it gets even stranger...
Crosstalk between the microbiome and cancer cells by quorum sensing peptides. (2015)
Says:
"Our findings thus indicate that the human microbiome, through their quorum sensing peptides, may be one of the factors responsible for cancer metastasis."
But this has actually been known for several years.
Farnesol, a Fungal Quorum-Sensing Molecule Triggers Apoptosis in Human Oral Squamous Carcinoma Cells. (2008)
This paper shows that QSMs from a fungus can stop cancer in the mouth.
I'm not saying I have any answers, just some observations that researchers are seeing and starting to look into.
Maybe if they can figure out what makes cancer tick, they can treat it more wisely. Until then, the only real defense is a strong immune system and healthy levels of bacteria and fungus, just like what is protecting plant roots.
Tim, the way I look at it, just because the fox kills a rabbit doesn't mean there won't be more rabbits.
DeleteThe problem with cancer is it means end of the road for the cancer.
Cholera kills but it enters the environment and infects lots of other people. Because it can afford to kill a lot of people who live in crowded conditions. It won't kill everyone. And it lives in a different state in brackish water.
Same goes for tapeworms, giardia, malaria, etc. Smart parasites. They don't kill and they spread. (okay, like I wrote before, some people die.... falciparum malaria is the malaria of the slums where it can afford to kill because there are so many other potential victims. Same with HIV.... the less aggressive type will not kill.... Senegal for example has that variant... but in places where people are having lots of sex with many partners, HIV variant is different and lethal. MInd you there are some who think that it's actually latent syphilis that is killing... but I digress...)
But cancer? Most cancers happen in people past reproductive age, so fine. It doesn't prevent reproduction most of the time. But when it happens in a young child, it's a dysfunctional, stupid disease. Pointless. End of story pointless.
I agree with you that the best defense is a good offense. But whose to know if they have this? Luck is part of it too.
We all die. Enjoy life while it lasts. Don't worry about every little stupid thing. Learn to roll with the punches. Protect yourself from toxic people. That is the bottom line.
Just one last thought...if cancer causes a person to die, to fall to the forest floor and rot...cui bono?
DeleteIn the grand scheme of things, it doesn't matter. On the personal level, it does.
DeleteWell, when I die, the party is just starting. I'm going to be a real fun guy!
Delete@Gabriella
Delete"it's stupid because it kills" and "The problem with cancer is it means end of the road for the cancer."
Partly true, but maybe it simply knows no better! And we must admit it tries very hard to survive, to evolve, to adapt. It is often compared to a new species...
Dr. Ayers remarked something similar recently:
"Unlike all other forms of the species genome, the cancer cells are outside of a history of evolution for their new ecological role. A cell of a tissue has experienced extensive evolutionary selection, but a cancer cell is an organism in a new ecological environment. It is similar to an earthworm cast upon the shore of precolumbian America with no other soil worms, or the first finches arriving in the Galapagos. The rapidly mutating cancer cells fill all of the niches, but they are poorly adapted and very fragile. Most die even when confronted with weak toxins, e.g. chemotherapeutics. And every cancer cell is genetically unique." (Ayers, 2015)
@Gemma, so maladapted to the ecological environment.
DeleteMy dad died of cancer 10 years ago. Started in his liver but by the time they found it it had spread throughout his entire body. I remember a doctor telling the family that cancer was not just a disease, but like a living creature. That always stuck with me that he said that. Now you are saying that maybe this is the case?
ReplyDeleteHere, some reading!
ReplyDeleteDid Cancer Evolve to Protect Us?
"Could cancer be our cells’ way of running in “safe mode,” like a damaged computer operating system trying to preserve itself, when faced with an external threat? That’s the conclusion reached by cosmologist Paul Davies at Arizona State University in Tempe (A.S.U.) and his colleagues, who have devised a controversial new theory for cancer’s origins, based on its evolutionary roots. If correct, their model suggests that a number of alternative therapies, including treatment with oxygen and infection with viral or bacterial agents, could be particularly effective."
But, when doctors see this, and try to use it, they are treated summarily as quacks. And maybe rightly so.
Dr. Frank Arguello’s “atavistic oncology”: Another dubious cancer therapy to be avoided
"...the hypothesis that cancer represents an “atavism,” the reawakening of ancient genetic programs seen in our single-celled ancestors billions of years ago, pops up periodically and sounds plausible. Unfortunately, virtually every example of this hypothesis is riddled with misunderstandings of evolutionary biology that render the hypothesis at best highly implausible."
But still, the very best cancer doctors in the world admit they have no idea what cancer is. They are starting to agree that it is not a simple cellular disruption.
All i would like to add is that cancer is ubiquitous, and fungus is ubiquitous.. Uh?
ReplyDeleteLevi - And the treatments for cancer generally destroy the immune system, then almost everyone undergoing these treatments get massive fungal infections. In fact, it is almost standard to start treating for fungal infections when starting someone on cancer treatments.
DeleteFungus loves dead stuff to replicate in. It also loves to protect healthy, living things to travel around in.
Here's a "cool factoid of the day": Sloth hair.
"Sloths--arboreal mammals commonly found in the lowland forests of Panama--carry a wide variety of micro- and macro-organisms on their coarse outer hair. Here we report for the first time the isolation of diverse and bioactive strains of fungi from sloth hair...We found a broad range of activities against strains of the parasites that cause malaria (Plasmodium falciparum) and Chagas disease (Trypanosoma cruzi), and against the human breast cancer cell line MCF-7."
http://www.ncbi.nlm.nih.gov/pubmed/24454729
I'm being sort of off topic here, and I apologize in advance. But I read this for the first time today and I think there are other people who read Tim's blog for whom this will entirely resonate.
ReplyDeleteHave you people ever read this? http://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf
Sometimes I read a blog, classic ruby. She had this to say about chronic debilitating health conditions:
I realized today that, because of my limited spoons, I am forced to live in my mind. This is not imagination, and it’s not wishful thinking. You see, my brain wants to do things I am patently incapable of doing anymore. And for the majority of the things that I could technically do, the impact, and results, would be disastrous to my ability to move in the near future. My mind is ambitious, it wants to take on the world, it wants to explore and experience. The body that lives in my mind still remembers what it felt like to get up and practice dance moves for our squads meet later that day, how to play dodgeball and be the last gal standing, and how to wake up in the morning and decide for the next 22 hours I am cleaning every nook and cranny of my house so that it shimmers.
Being a prisoner to your own body is such a frustrating, demoralizing thing.
The body in my mind can do all of those things, and more…so, so much more. It can eat whatever it wants again, and have the energy and ability to make lavish meals for breakfast, lunch, and dinner, and then wolf ’em down with reckless abandon. It can wake up, look at the clock, realize it’s running late, and immediately dash into the shower, and be out the door in 10 minutes flat. It can do some Zumba and then revel in the glory of the way it feels amped up, and strong and limber all of a sudden.
In my mind, I can make plans for something in the near future and be sure that I’ll physically be capable of making it, and have a great time doing it. In my mind, I get to live every day the way I would want to, and I would get to be normal.
*************************
http://classicruby.com/2014/03/24/trapped-when-your-body-betrays-your-mind/
********************
When I read this today it was the TRUTH. How many times have I been swimming and in my mind I was going through the motions in my mind of cleaning up my place, washing the windows, doing whatever it is that I could do without thinking about it way back when. You can have all the best gut bugs in the world, eat the most nutritious diet, take all the best supplements, but when shit happens, it happens.
Gabriella, yes, Yes, and YES! My husband and step-son both have misbehaving mast cells and no matter what we do/don't do/add in/take out/avoid they will still react, maybe right away, maybe days later, maybe in the middle of the night or while napping. With my son, I serioisly wonder if it has to do with the tilt of the earth during summer, my husband is more reactive in cold weather. So yes, when shit happens, it happens and sometimes there isn't a single thing you can do.
DeleteHeather, have you listened to this lecture? It's from the Ehlers Danlos foundation.....about mast cells.... https://www.youtube.com/watch?v=mUkSqY8oPag
DeleteThank you for the link, Gabriella. Had a strange feeling you would know what I was talking about.
DeleteI think both father and son could be diagnosed with EDS-h if we could find the right doc in the know which would make it 1 in 10 vs 1 in 3000 for MCAS. Mayo was a almost a complete waste, except for their use of the word mast cell (but didn't put it in their report) which has taken me down the rabbit hole. MCAS is still too new. I think my husband suffered a kounis-like cerebral vasospasm following anaphylaxis which left him suddenly neurologically diasabled last year. We find out tomorrow if we can officially undo the "conversion disorder" our hospital and Rush University labeled him with. I do feel that we are ahead of the curve because I know where we are going and need to be already, vs the many who go 10 to 15 years without any real answers.
I am also researching any link between spina bifida, EDS, and MCAS parkinsonism. There is definitely upper motor neuron involvment along with something activating angioedema that obeys midline and dermatomes.
DeleteHeather C.
DeleteMast cells: what pathogens is it about?
Role and Relevance of Mast Cells in Fungal Infections (2012)
"Our understanding of the role and relevance of MCs in raising host immune responses to pathogens has improved considerably over the last 15 years. We now know that MCs are crucial for protection in many models of bacterial, viral, and parasite infections. In contrast, we know very little about the role of MCs in fungal infections. This is surprising as there are several independent lines of evidence that point towards critical effects of MCs in antifungal host defense responses: MCs are strategically located to encounter invading fungal pathogens, and they are equipped with various receptors to detect them and to become activated in response to them. Also, MCs produce a large array of mediators, many of which have been shown to contribute to antifungal host defense.
The ultimate goal of future research should be to translate findings from animal models of fungal infection into new treatment regimes for patients who are vulnerable to lethal fungal infections. Therefore, in this review, we have presented an overall view of MCs response to bacterial, viral, and parasitic infections, and we have given insights into possible defense strategies that could come into play during fungal infection. We emphasize the need to characterize the role of MCs in host defense responses against fungal infections. It is the need of the hour to direct our attention to the physiological and beneficial functions of MCs and to re-evaluate them as potentially powerful players in immune responses against infectious fungi. Thorough research in this direction may lead to novel and improved therapeutic interventions to combat fungal infections and to reduce their morbidity and mortality."
Thank you Gemma! The art of asking questions: What is the source of the possible fungus and is it avoidable as if environmental such as black mold in a home or foods, or unavoidable such as in the air or soil based where lawns are manicured?
DeleteGemma, always a flip side :)
DeleteFungal metabolite and suppression of mast cell activation
Abstract
Fungal secondary metabolites such as gliotoxin, an epipolythiodioxopiperazine toxin produced by pathogenic fungi like Candidaand Aspergillus, possess immunosuppressive activities and have been thought to contribute to pathology of fungal infections in animals and humans. Since recent studies show that mast cell plays a crucial role in the front of host defense, we examined whether fungal secondary metabolites affected mast cell activation. We found that gliotoxin had suppressive effects on FcεRI-dependent or -independent mast cell activation, including degranulation, leukotriene C4 secretion, and TNF-α and IL-13 production. Gliotoxin also suppressed intracellular Ca2+ rise through store-operated Ca2+ channels with a minimal effect on depletion of internal Ca2+ stores. Finally, gliotoxin induced intracellular production of superoxide possibly through a thiol redox cycling, which appeared to mediate suppressive effects on mast cell activation. These findings suggest that suppression of mast cell activation might contribute to the establishment of infections with gliotoxin-producing fungi.
Heather
Delete1) Yeasts and fungi are ubiquitous. Unavoidable.
2) "These findings suggest that suppression of mast cell activation might contribute to the establishment of infections with gliotoxin-producing fungi."
Does that seem positive to you?
Heather, ?conversion disorder? That's pretty smack in the face, eh? When someone has an actual real physiological/immunological problem.....
DeleteI know that angioneurotic oedema (I"m old so don't know what the current terminology is but I think it's been changed) can happen even from pressure. No allergen required. ???? This is hereditary.
http://www.medicinenet.com/script/main/art.asp?articlekey=2257
Gabriella, yes, still stings! Just got the preliminary findings from his neuropsychiatric eval and will be clearing his name so neurologists will take us seriously and further investigate.
DeleteUnfortunately, it doesn't fall under the scope of hereditary or acquired angioedema. His symptoms go far beyond the dermis and his compliment system is all good.
Gemma, no it does not seem positive, just that it may not be the trigger for MCAS, and is unavoidable like all the other unkowns.
Heather, weird thing probably not applicable but it's a good story; I was acquainted with the wife of an emplyee at one of the labs. They lived upstairs from my office. Anyway, she was telling me one day about this swelling business she was getting and, as per your own experience, she was fobbed off by specialists. She told me that when she'd drink Chimay Ale and some Italian brew, the swelling would go away.
DeleteI was intrigued so I checked out the ingredients list for these and they both contain quinine. Other ales did not have the same effect at all.
So I looked up uses for quinine..... and so it goes. Then quinine was 'blackboxed' because it can have adverse effects as well.
Weird story, but true.
Tonic water does not have enough quinine in it anymore. Schwepps and Canada Dry have had to lower the 'dose'.
Gabriella, of course a natural anti-malarial can't be left for just anyone to take! No money for big pharma there.
DeleteAs far as the brush off, can't blame the doctors for what they don't know, or knowledge that just isn't available at the time.
Patients should never be fobbed off. If a doctor doesn't know, then saying 'I don't know' is a good idea. At least not demean and belittle a patient because of ignorance. Dr. William Osler said that we need to listen to the patient. It takes longer than a few minutes, but it is truly amazing what we find out when we do. Just let the patient talk. Eventually something of importance pops out.
DeleteHeather, quinine is an anti-inflammatory as well. Medics focus on the adverse potential effects but these are not as common as they make it out to be. How on earth did so many hundreds of thousands of people rely on it as an anti-malarial if it was destroying platelets and whatnot? Sure there are some people who develop adverse reactions, but so do people taking aspirin or any other medication. One patient recently died suddenly after two doses of methotrexate for rheumatoid arthritis. BOOM! But you don't see methotrexate being banned. You don't see aspirin being relegated to prescription only. And so it goes.
DeleteGabriella, I totally agree and hear you.
Delete