Curing Mastocytosis Naturally

Hi to all. I was diagnosed with Aggressive Systemic Masctocytosis 2 1/2 years ago. I went from being reasonably healthy to drooling on myself and going into shock every other day, with paralysis and strokes within 3 months. Many doctors did not know what was wrong, luckily one was a rare disorder specialist and he spent about 30 minutes with me, took some tests and I was confirmed fast after that. I was too far gone even for Gastrocrom, I became allergic within 2 weeks. They gave me less than 2 months to live. I barely remember this time period, as I lost my memory and could barely put a subject and verb together in an hour, and 4 months earlier I was a public speaker. I am writing this, because this began my journey into being a very well researched individual on holistic medicine for mast cell and other rare autoimmune diseases. I have been fortunate to have been to some of the best clinics with the best alternatve MD's in the country and after 4 months of cellular detox treatment and special diets, I was able to walk and talk again and maybe I can help someone. It has been a long road back and I still have to watch my diet carefully, but I am 85% back to my old self, with no drugs and no trps to the hospital and am happy to share any information ith people are are looking for a complete healing from this, not just a bandaid.

Edited January 10, 2011 at 8:45 pm

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22 replies. Join the discussion

Yay - I always knew that diet was a big part of it. That's why, I think, I was able to ride the west coast of NZ at xmas without any problems. What I did was to eat a low histamine diet, increased exercise and ignored the rash. Please any hints on a more diverse diet please let me know! Cheers, Mel

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Please can you tell us more? I am really suffering at the moment and only able to eat rice....

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Would love to hear more. I have fallen HARD off my diet through Christmas. Was on a low-histamine, anti-allergy diet. I am working with a Doctor of Natural Medicine to help me as I don't want to increase my Nalcrom, Ketotifen or go on any other prescriptions. I am on Calcium, Vit D, Vit C, as well as Quercetin. The Quercetin is from what I understand a natural anti-histamine.

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Thank you to those of you who replied and want more information. I figured I would just post for all since everyone had the same questions. The first thing you have to remember is that the histimine reaction is a symptom, NOT the cause and NOT what you should be treating. You can treat it all you want but until you get to the underlying conditions, you will always be in that cycle. It has been after many years of research and consulting with the best and brightest that I finally understood and was able to reverse, not just treat my masto. The first thing you need to do is understand that masto, as with most conditions, are based off of an underlying toxicity issue. Period. The first step in curing yourself is to detox. When I say detox, I mean colonic's, high doses of VitaminC (I would do a vitamin c flush once a week for the next 3 months) also, make sure you are avoiding ANYTHING with chemicals. Drugs, non organic food, preservatives, shampoo's, skincare etc etc. Also, you will want to do a heavy metal detox as well as check for systemic candida. It can create the enviornment for secondary diseases like masto, or visa versa. I have the info of the holistic doctor that saved my life, or I can get his info of what he put in my IV drips. I had two IV treatments a week for 4 months that were aimed at eradicating cellular toxicity. Also, I had to go on a fasting liquid diet for a couple months (with specialized shakes, but I think a juice fast would do the same thing.) It gives your cells a chance to remove the underlying toxicity and vastly improves your condition in just a couple months. I have been mostly back to normal (lol..a matter of opinion, but where I was before any masto symptoms hit) for the better part of a year but still stay away from tigger foods. I did a juice fast in Dec and now most of even the masto triggers are not triggers anymore. Anyway, I would buy zeolite (powder, not liquid), Buffered C powder (vitacost.com has high gram doses and is the best website) and do colonics where you live (at least 3) and start taking psyillium husk. Please stay away from ANY sugars, if you have to use something, use zylitol or stevia, but xilitol is better. Also, invest in Chia seeds and read up about them. They provide the highest doses of Omegas on the planet, they do not have any adverse affects and for people with masto getting high doses of omegas generally mean eating things that we are allergic, or could be allergic to. Also, no alcohol. This one was VERY hard for me, as I love wine...and in time you might be able to have a drink every now and then but for the time being here is a list of things to not get near your body:
Sugars
Carbonated beverages of ANY kind
table salt
Preservatives or Processed foods
nuts
high sugar fruits
non organic or non grass fed meats
non grass fed dairy
cocoa/coffee
alchohol
ciggarettes/drugs of any kind
dyes/perfumes etc etc etc

This is in addition to anything you have ever reacted to. I cannot stress the importance of no dairy. If you have access to Raw Unpasterized milk, fresh off a farm from grass fed cows, then you are ok to drink that.

Stay away from almond and rice milk except in certain doses. I would try and eat as much Raw as possible, but even 50 percent would be great, even if you just were to add a salad and a green smoothie in your diet after your detox fast.

Water Water Water---distilled or ionized. Also making fresh lemon juice (using a juicer and xilitol) would be great first thing in the AM, it helps you detox.

The most important things to keep in mind is to detox first, then rebuild with healthy non-masto cells. I have seen cancer cured this way as well as diabetes and most other major diseases with this protocall. I would have in your head that the detox and rebuild phase takes 6 months of careful dedication. Once you are healthy, you can incorporate somethings back into your diet, but most of the stuff that got us junked up in the first place, you probably won't want because you will feel so good and will guard your health so mindfully.

I know I said this in the beginning, but I need to make it really clear. Systemic Mastocytosis has to do with toxicity. Period. As does cancer and most other diseases. If you detox, give your body a break and then feed the healthy cells what they need to thrive your body will auto correct. Our bodies want to be healthy but after so many years of shock and drugs and ravaged tissue, the nucleus (brain of the cell) cannot properly send the right signals anymore because it is literally "drunk" of toxicity---btw, the nucleus getting drunk off toxicity also means it cant tell iteself to stop growing (think tumors.)

The first step before you start to heal yourself, is to understand that this is happened because there have been bad decisions made...either by choice, or inadvertantly to your body. Either because you took prescription drugs at some point in your life, ate too many Ravioli's growing up, had too much soda, or liked to go into the sun and used sunscreen...there are thousands of different variables here---but the bottom line is this...somewhere, somehow, you were exposed to toxins and they have poisoned the critical thinking aspects of your cells and your cells are fighting themsleves and all the terrible reacting and life threatening situations that occur from masto are literally the after-effect of that. remove the toxins, the cells can think clearly, the cells think clearly they start to make good decisions, feed them what they need to heal and recreate healthy cells and you have a new life.

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Hi Robbin

You sound like a really lovely person, thank you for all that information. I am already following the diet recommendations totally. I also agree with you about the cause of masto - I think I was taking too many prescription drugs and then I had surgery.

What I am worried about - you say come off all drugs but do you mean the antihistamines? And I am on steroids, yikes.

Also I am very very scared of reacting to things like the husk, Vit C etc. Did you not react to any of this?

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Thank you :)

Great questions! I do mean come off all the drugs...but with some that is easier to do than others. I am not a doctor, but what normally works, especially with Lupus type drugs (think prednisone) and cancer drugs is that if you are not comfortable stopping altogether, then as you taper those dosages down, you increase the natural medicines..so lets say a window of 3 months for the tapering-conversion. This is especially true in the case of prednisone, which is one of the most toxic substances to your cells. Now after the complete conversion, then you need to start the 6 month clock..because all you are doing up to that point is staying steady and the beginnings of a detox. As with any detox, you can expect to feel a herxheimer reaction. I would say that if you are concerned about psyllium husk, take slippery elm. Masto bodies do not absorb nutrients and most people (although this is not widely known) have holes that have performated through their gut lining's--thats why it starts with the stomach pain and swelling and then goes systemic wreaking havoc. I remember mine concentrated on my brain and my automic nervous system and one wrong parcel or spec of anything, and my body would not breathe on its own and sometimes my heart would just stop--that was before the strokes--very scary times. You should not have a reaction to the vitamin C powder or doing the shakes (i can get you the name of them) or any type of juice fast, that would be the first step.... what you might have is the detox reaction when you start, but that is a GREAT sign, it means its working.

In my opinion, if you were to taper off the steriods for the next 2 months and then month 3 start on a raw foods/juice fast and completely taper off, then month 4 do a 30 day juice fast, by month 5 you would be able to take psyllium, vitamin c and anything else holistic, without fear of having a reaction.

In place pf the psyillium until then--make sure you are doing enema's and colonics. Here is the deal...many masto patients suffer from toxicity due to heavy metals and/or candida and both of those get stuck in your colon and will stay there forever unless you have colonics. I have heard this over and over but did not have the money to get them done. I got them done about 6 months ago and my IQ shot up, what fcelt like 100 points, and for the first time in at least 5 years, my tongue was pink and I felt perfect. You can do enemas (and I would start NOW on those) and home colon cleansing till the cow comes home, but nothing will break up theputrified toxic chemicals that are being reabsorbed in your blood unless you get one professionally done. I would do 3-6 if possible.

Hope that helps!
ps--I would taper ALL the drugs, including the antihistimines. You wont need them when your body is not hyper sensitive.

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You are sooo kind and helpful, thank you very very much. What do your 'mainline' doctors say about what you did? Do you get your tryptase measured still?

I so know what you mean about IQ, mine has plummetted.

You are bang on about the steroids - I have been on them 9 months now varying between 40mg and 10mg but have been on 10mg for the last five months or so. Am going to taper off sloooowly. And the try your plan and see how much I can stand. Do you not take ANY drugs now??

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Hello, thanks for the great information.
Dis you go to a Dr. to learn how to do this ?
I have thought that the body has to be cleaned of all toxins but didn't know where to start.
My daughter has Mastocytosis confined to stomach I found this so interesting, she did also.
Thanks again , any other information you would be willing to share would be so helpful.
Marlee

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Hi, no I am not on any pharma drugs, only vitamins and I do very high doses of vitamin C. Fasting really, really helped. I juice fasted (NOT fruit juice) for over a month and it reduced the remaining symptoms signifigantly.

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Oh wow, so, a couple things firstly, if she has it confined to the stomach it is IMPERATIVE that she reverse it (easily done through alternative therapy--nutrition__raw foods etc) ones it goes systemic it is, well bloody awful, frightening and debilitating. In my opinion, that time frame can be rather short--in my case it was less than 3 months.

I went to many many Dr's. I was fortunate financially that I talked with some of the best holistic Doc's on the planet. Its one reason why I really want to get this info out there. I have also done tens of thousands (literally) of hours of research on masto and other systemic-toxicity diseases and possible natural cures. I have seen people"s very grave conditions (stage 4 cancer, fibromyalgea, lupus, insul-res diabetes etc etc...) turn around with natural protocals and ina very short amount of time. I am just trying to take everything that I have personally learned from the best docs and Vanderbilt to the best holistic docs and all of my research. Also, I was given 6 weeks to live and have an 11 year old (he was 9 at the time) and knew that i had to fight and hard to live.

Please feel free to email me personally, and we can talk or I can talk to your daughter. I have been through this, and if I can be a support, or refer you to some of the better people that helped, I am very glad to.

Robbin
robbinlhill@aol.com

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This is a very interesting discussion, and it is true that mast cell disease is highly affected by one's diet. I have found that by cutting my foods to very small quantities and eating only natural foods, that my symptoms seem to have nearly vanished. Of course, I continue to take my histamine blockers, but since my diagnosis is MCAD (IA), I do have the possibility of reducing those meds. Like RLN, I prefer to not be on any meds. However, since I am a shocker, I may very well always need those meds to prevent anaphylaxis. Now I find that the best way to avoid the symptoms is through avoidance of triggers (both dietary and lifestyle) and taking the proper meds. While I am fortunate that with MCAD, I might be able to reduce or eliminate meds someday, those with Mastocytosis are not in the same situation. Mastocytosis is a genetic mutation. Therefore, one cannot change their genes and DNA.

It is important for anyone following this discussion to realize that the advice given here by any of us must be considered carefully. I am sure that RLH would feel terrible to learn if someone upon her recommendation stopped taking their meds and subsequently shocked and died. It is not happy to think that this can occur, but while most variations of masto won't end one's life, the actual anaphylactic attacks can be fatal. So, for anyone who is considering trying the enemas, fruit juice diet, etc, while also eliminating their meds, you need to realize that only YOU can decide what is good for you and that your choices may or may not put you at risk for fatal results.

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Hello all ,

Please look at my disscussion in finding a diagnosis .

It is extreemly DANGEROUS for anyone with mastocytosis or mast cell activation syndrome or idiopathic Anaphylaxis to come off their meds .

Diet has a part to play in managing mastocytosis / mcas .

BUT mastocytosis is a genetic condition that can not be cured by natural methods alone .

Please do not stop your meds . My discussion includes details of forums and websites with accurate , caring advice on all elements of living with a mast cell disease . I understand your desperation , It has taken me 3 yrs to find the right doctor and have tests . i am awaiting my results . I have shocked every 3 days and monthly . I completely understand how any of you feel with this illness .

BUT , please do not put yourself at risk , by stopping your meds xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Robin - you are opening yourself upto lawsuits telling people , of whom you ahve no knowledge , medical experience or judgement of to stop meds that are crucial to their survival .

Much love

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PEOPLE PLEASE GET REALISTIC!!!!! Mastocytosis can NOT be cured by any means, it can be controlled but NOT cured. Anyone who tells you different does not have all the facts. AND Mastocytosis affects each and every one of us in a different way, there is no one set treatment, there is no one set plan of action. Each case has to be evaluated and treated according to that person and their symptoms. And each of us has many and varied symptoms. Yes some are similar in many ways but some are as varied as the fish in the sea. What works for one of us may work for another but then again it may not. Find a Dr to work with you that you feel comfortable with and go with that. For those that find the holistic approach works for them, hey that is great, power to them, I wish them all the best, but for them to say that this is the ONLY way to go is not fair. People are desperate to find SOMETHING that will work and will latch on to anything when they get desperate. That desperation can end up killing them. I would hate to end up being the cause of that happening to anyone. I am sure others would agree. SO PEOPLE PLEASE PLEASE PLEASE. Be very careful with what you do. Like I said find a Dr who will work with you and you feel comfortable with. Work into new treatments slowly and see how it goes. I know we are all desperate for help but please please please be careful.

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Robbin,

Without wanting to be offensive, I truly find it hard to believe that you could possibly have been diagnosed with Aggressive Systemic Mastocytosis. ASM is exceedingly rare and I don't see how you could possibly have gone to "many doctors who didn't know what was wrong" within the 3 months that you claim in which you were going through daily shock, drooling, paraylsis and strokes. Yet, I've never heard of a SINGLE CASE of mastocytosis, be it aggressive or any other form in which paralysis and strokes or drooling are part of the symptomatology of the disease!! Mastocytosis does NOT CAUSE STROKES OR PARALYSIS! I also don't understand how a specialist could have diagnosed you in 30 minutes even with some tests for my specialist has spent 2 long years working with me and although he's diagnosed me, we are still confirming the form of my mastocytosis. You don't mention what tests you took, what your bone marrow biopsy report was, you give no information to confirm your story. And it's not the symptoms that only don't line up, if you truly has Aggressive Systemic Masto, your primary blood tests, the CBCs would have been screaming out at your doctors and you would not have had to go to "many doctors" for they would never have let you out of the hospital until they did find out what you had! This is the one thing about any kind of "aggressive" disease, those exams, especially with Aggressive masto which causes extremely serious anemia and changes in your platelets and white blood counts, you can't hide that kind of blood test with a doctor and they would have immediately hospitalized you, especially if you were going through strokes and paraylsis!

Your story isn't making any sense for if you were "too far gone for gastrocrom" they would have done some very specific chemotherapy which is specifically directed towards mastocytosis patients!! And if that didn't work, you'd have been gone within weeks. You would not have been able to go galavanting around the country to get to "some of the best clinice with the best alternative MD's in the country". Where would you have found the strength, if you were indeed paralyzed and having strokes? Strokes cause DAMAGE to the brain - sometimes reversible depending upon the type of stroke. If you were indeed paralyzed how did you possible find the means to find these doctors much less get to them and still be able to survive the trips with Aggressive Systemic masto? I know what it's like to travel with masto and I've gone through some real difficulties in trying to do it after having undergone surgery. The wear and the tear of the trip itself is enough to hospitalize a patient in this situation and yet you went to clinics?! And if you indeed had ASM, and it took you time to see these doctors at their clinics until you finally settled on one, how did you survive 4 months of the detox treatment without the treatment putting you into anaphylaxis, for we masto patients can't be eating and drinking just any old thing - fruit especially is a well know mast cell degranulator and we can't drink just anything! I drank a mango smoothy the other day and it about doubled me over due to the fact that mangos have terebetine - or terpintine as one of their chemicals.

Robbin, if you really did get a "cure" which I find hard to swallow, then why don't you list the names of these clinics and doctors you met with? And the doctor who diagnosed you with ASM, who was he? What hospital was he associated with? Was he honestly a masto specialist? I just find all of this way too hard to swallow because you don't back it with anything plausable. You say all kinds of things, but nothing of SUBSTANCE! Like a politician, the promises are hollow.

It is well documented and well known that Diet is important for masto patients. It has been well documented what medications, foods and substances are mast cell degranulators and our doctors advise us that we need to avoid them! Alcohol is a KNOWN mast cell degranulator - that is a total given, especially Red Wine! And to tell a masto patient to drink raw unpasteurized milk is foolishness for not only are our immune systems compromised, the threat of TB and any other milk born disease is too risky! If a masto patient were to get TB it could be deadly and besides that, the bateria and enzymes of raw milk would likely cause immediate diarrhea because these could trigger us.

The last issue you talk about is that of the "bad decisions" that I've somehow randomly made in order to get my disease. This is just totally BUNK!! I've never been over medicated, or had too much radiation or sunscreen, or even RAVIOLI'S! This statement that you have made is the hight of absurdity for mastocytosis is a KNOWN GENETIC DISORDER! The research is out there showing that the mast cells have a genetic defect and that they are not dying off and that there are too many within the tissues. I'll bet you anything that with Mast Cell Activation Disorder, which is not a proliferative disorder like SM, but is an activation disorder, that research is going to reveal in time that this too is a genetic defect. The reason for this is that the symptoms for the patients are the same and the treatment is as well. It is only logic that in time research will show that there is the same common defect involved in both diseases. Robbin, you can't do some kind of "RANDOM MISTAKE" to cause your mast cells to have a genetic defect. It would have to be the very same mistake for everyone in order to produce the same disease! How can you explain people in South American or India or Russia with all the same symptoms and same disease pathological evidence and yet with different cultural influences or genetic makeup?! This is not logical your statement for what you are saying is that a million of different factors could randomly create this genetic defect in people from around the world! Perhaps within only one region, but not around the world. It just doesn't work that way. You have obviously NOT studied mastocytosis for your reasoning is not in line with the research.

Without knowing the research on Mastocytosis, how can you possible, even as another patient, say to someone that they must come off of "all the drugs" ?! You say yourself "I am not a doctor" so how can you say what to do with "lupus type drugs" and then also recommend this for "cancer drugs"? You are playing with life and death sitautions here Robbin? Do you REALLY want to be responsible for this? There is not one single patient who is on these drugs who ever must stop taking these drugs cold turkey and without doctor supervision for there are major ramifications in doing so!

This is a very interesting claim that you make and extraordinary advice:
" As with any detox, you can expect to feel a herxheimer reaction. I would say that if you are concerned about psyllium husk, take slippery elm. Masto bodies do not absorb nutrients and most people (although this is not widely known) have holes that have performated through their gut lining's--thats why it starts with the stomach pain and swelling and then goes systemic wreaking havoc. I remember mine concentrated on my brain and my automic nervous system and one wrong parcel or spec of anything, and my body would not breathe on its own and sometimes my heart would just stop--that was before the strokes--very scary times."

I've looked on Wikepedia as to the Herxheimer reaction - "The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-"

If your detox treatment were to create this kind of reacting within a masto patient, it could ONLY be done in a hospital with doctors on call for this kind of situation would cause massive mast cell degranulation!! Immediate anaphylaxis!

And in recommending to take herbs that are not studied well enough to know if they inhibit mast cell degranulation or perhaps cause it is dangerous. Dr. Theoharides has studied in depth flavinoids and he will openly state that some flavinoids will promote mast cell degranulation and others will prevent it. Due to how delicate our systems are, we can not take anything, even natural herbs and remedies without first knowing if they will cause a direct response upon our mast cells.

I don't think that trying to remove all of the industrialized foods and chemicals, preservatives and dyes is at all a bad idea and I know that most of us masto patients do this because we've seen how sensitive our bodies have become and I heartly approve of suggesting that we improve our diets to being as chemical free and natural as possible, but this is within reason. We can not go "all natural" without first considering what those products are. Nuts are incredibly natural and healthy food, but NOT for masto patients! Wallnuts will put us into instant anaphylaxis and this is fully known and recognized! Your advice is not wise, Robbin. It may have helped you, but you can not advise this as a cure all for all masto patients! It may improve a patient and they may find relief from it, but it will NOT CURE mastocytosis. You are giving a false promise!

As to your comment to the woman with the child with mastocytosis in the stomach, you are not understanding how the disease works. Foods and diet are not the cause for the increased mast cells within the stomach tissues. And if the most advanced authorities themselves are not certain as to how and why the disease goes from being localized to systemic, how can you make this claim that within 3 months this happened with you! My disease was brought out of hiding from surgery and I didn't realize that it was there, but in reflection over 10 years prior, there were small signs and situations of anaphylaxis which I mistook for food poisoning! The disease is a genetic defect, Robin, and you can't stop it's progression with a change in diet. It just won't work that way.

I am sure that if you truly had ASM, that you would not be here today, not matter what diet you chose. This leads me to believe that your doctor jumped to conclusions based upon your symptoms only. The top researchers have openly stated that the severity of the symptoms is totally independent as to the severity of the form of the disease and it's stage! ASM not only causes extreme anemia and blood changes but also organ enlargement and dysfunction within the liver, pancreas, lymphnodes and bone marrow. This is pathological changes and you can not revert these things with a detox treatment in only 4 months. I'm sorry, your doctor most likely misdiagnosed you and if you had mastocytosis it is the indolent form and your life is in no more danger of being cut short than any other person without mastocytosis, for ISM is a disease which is nothing more than a severe allergic disease and the large majority of us will live out our days as long as our own grandparents did.


My statements here can be backed up by research and I will be more than happy to provide it to anyone wishing for it.

I am sorry for you Robbin for you may feel attacked by me and perhaps my statements are strong, but it angers me that you could either purposefully or in ignorance mislead any other patient and put their lives in danger with this advice of yours. Perhaps some of the holistic approach may help, and I'm not one to say that it would not - each person must try what they can to help themself, but to give advice as dangerous as this without naming the doctors you saw, giving data and information backing up your diagnosis and claims, without considering the lives you are endangering by advising to get off of their medications, this angers me for you are putting their lives in risk. You are leading patients astray with your advice and without others to bring balance to your advice, this is dangerous and I could not remain silent.

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ltme2
AMEN!!!!!!!!! and thank you.
I only hope others read your wise words and pay attention.

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I disregarded the original post but for my information when was it determined that it was genetic? There is a mutant c-kit because I have it but I didn't know that termed it genetic. I remember from 4 years ago at the national convention that they absolutely could not call it genetic but those doctors suspected it. Can you tell me where to go to read about this illness being genetic. It is important knowledge for my family.
Thanks

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ITME2, While I totally agree with alot of the things you have to say;(I am the daughter of Marlee16-I have Masto confined to the GI tract-) I,like Cynclaire would love to be able to read the information that you found about Mastocytosis being genetic. I,as well as my mother have and continue to research this disease, bc as all of us "Mastoer's" know;...we have to be our own advocates! Thank-you in advance for providing that information! I hope this post finds you well today ! ((:

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Research pays off!!

Although masto is considered a genetic disorder, it is not consider a familiar disorder except in rare cases. They are far and few between. However, since they have finally recognized that there exists an autoimmune MCAD, and since no research has yet been done as to this form of masto, it is logical to presume that like other autoimmune diseases that this may indeed run in families. But, without any research to date into this form of masto, it is anybody's guess as to whether or not it runs in families! We need to push for research into this form.

Here is an article in the online magazine called Blood from 2008 written on Mastocytosis by Dr. Dean Metcalfe of the NIH. I will give the URL for where you can see the article. I copied it for myself and this is where he refers to it as being a genetic disorder.



" ......Their most remarkable pathologic features are abnormal accumulations of mast cells in the skin, gastrointestinal (GI) tract, bone marrow, liver, spleen, and lymph nodes, and the frequent association of this increase in mast cell numbers with hematologic disorders. Mastocytosis may occur at any age. The exact prevalence of mastocytosis and its variants is unknown, and familial occurrence is unusual.

Variants of disease are now believed to be in part dependent on specific inherited genetic polymorphisms and acquired somatic mutations, and are categorized under cutaneous and systemic mastocytosis. The complexity of this classification system increases as data accumulate about clinical patterns of disease and associated genetic abnormalities. For example, a consensus conference in 1990 recognized 4 patterns of disease determined on the basis of severity and prognosis. A 2000 consensus conference added subclassifications to cutaneous mastocytosis and to systemic mastocytosis and set criteria for diagnosis."


http://bloodjournal.hematologylibrary.org/cgi/content/full/112/4/946?eaf

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After reading RHL's experience and advice I knew it was all too extreme for me. I didn't take it on because I have done my own research and made up my own mind on this disease and what's best for me. On this site the usual posters and myself have shared our own experiences and always talked that everyone was very different, so, it's been an unspoken agreement that we just listen and support by telling our own stories. I hope that doesn't change. I guess though, we have to be extra careful for those who are desperate for answers and will try anything. I hope they find answers that suit them. I must admit though, the extra attention to this site have given us some more links that do very much help. Sad though, that it takes this sort of thing for people to talk. Please don't be strangers and all the very best. Cheers, - Melp.

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I fully understand and agree with your concerns Melp. I've seen this site from time to time and read the comments and experiences and know that you all have a very good relationship. I've never joined up before for I didn't feel the need for it. Yet, when I saw RHL's statements and how absurd and dangerous that kind of advice is, it struck a note deep within me of how unprotected the naive and uneducated patient is and the amount of danger such a statement has hers is. I was made aware of this from a couple of other sites who spoke about this person and their fabulous claims and since I've had to do so much research in order to find my answers, it deeply alarmed me for this is not only missinformation, but it's so vague and treacherous that I felt that it had to be counteracted with information and truth.

We are all working hard to make our bad situations better and for those of us who go through potentially deadly anaphylaxis, this kind of information is extremely careless and even cruel for it could so easily be distorted by those unknowing patients as to something that is true and then disseminated to the other masto sites. This kind of falsehood has an element of truth to it to make it more plausable. Yes, it is well known that we all respond to foods and medicines, etc and by adjusting some, eliminating others, and adding yet others, we can indeed improve our heath and bring more stability to our reactions. This is very true and well known. But to begin basing this all on a "toxicity" problem and that we've somehow caused this and brought upon ourselves, be it intentional or unintentional, this is pure neglegence and wrong! How many of us, especially those who are mothers of UP kids already question whether or not they are at fault for their child being sick?! I've heard such stupid statments as question the vaccination of their children or taking certain medicines and here one patient saying its her sugar usage which brought it on! This is so false and this kind of missinformation must be combated for it's unhealthy to believe these things. We patients can imagine all numbers of things as to how this disease works and what caused it and this is because the great majority of us are truly ignorant and we aren't doctors. This kind of thing must be counteracted by the truth that the researchers find and in this very case if they themselves are not certain what triggers the disease other than it being a genetic defect, then how can we patients make up such absurditites and audatious claims as RLH has made. Everything this woman claims must be fully questioned for she has made statements as to having researched her disease and it's more than obvious that this is just not the truth. I even casts a shadow upon her claims that she has nothing to gain for if she truly didn't then why can't she back up her claims with data and names of doctors etc. so that research can be done so that perhaps some of us could try what she is suggesting?

I personally would not trust anything else that she has to say, for is she really a she, and is this person who they claim to be? All kinds of scams are out there on the internet and there's no way to verify who any of us are, really.

I very honestly hope Melp that your forum here won't change, but when someone comes on making the kind of all curing claims that she has and gives advice the way she does, this must be questioned. It's only responsible towards other patients to do so. Those of us who have more understanding and research of this disease have a responsibility towards those who are new to this and less informed to protect them from such dangerous missinformation as this woman is spreading. It's our moral duty.

I hope you understand my point of view.
LTME2

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