I have not died, I only have dial-up connection to the internet just now.
Healthwise, I am about the same as I have been since I've been receiving treatment by the oncologist and he has me on the mastocytosis protocol. Altogether, I take about 14 pills a day. Unless I take more.
AM
Doxepin
Nexium
Tagamet
Wellbutrin
Cymbalta
Clariten
PM
Doxepin
Tagamet
Singulair
Levsin
Atavan (2 or more)
Darvocet (pain is worse at night)
GABA
GABA is an amino acid that really helps to calm and to sleep, which is important since the itching is much worse at night.
Ok, gang, hang in there. I'll try to post occasionally but it's so terribly slow (the dial-up), I have to be having a very calm day to attempt it or I get aggravated. And we all know what happens with the masto when that happens.
Take care. Thank you for the concern. You are in my thoughts and prayers.
A Diary About Living with Mastocytosis
Personal Stories, Research Links and Data Open to posts by other patients and caregivers via email request to livingwithmasto@aol.com.
Known Triggers
- Mild Stress
- Strong emotions
- Mild physical exertion
- Perfume
- Listerine
- Shrimp
- Mosquito bites
- No-see-ums bites
- Dust and dust mites
- Clothing dyes
- Grass
- Some cleaning agents
- Heat
- Cold
Info Links
- The Mastocytosis Society
- National Organization of Rare Disorders - Mastocytosis
- The Cleveland Clinic - Mastocytosis
- American Osteopathic College of Dermatology - Mastocytosis
- Mastocytosis - Wikipedia
- National Institute of Arthritis and Musculoskeletal and Skin Diseases
- Myeloproliferative Disorders
- National Organization of Rare Disorders
- WebMD on Mastocytosis
About Me
I'll be posting many, many links about mastocytosis on this site. Some of the more general will be in the Info Links above. Some of the more medical and/or esoteric will be below, beginning with some basics for my doc, or your doc, or any doc wanting a quick understanding. If you note duplications, don't hesitate to let me know in comments or via the email at the top of this blog, as I do suffer from brain fog as one of my primary symptoms, and while I hope to make this blog a significant resource site for those who have desperately sought info as I have, I don't have the energy to spare to dot every i and cross every t. Hope its helpful. On to my story...
My name is Kat and I live in South Carolina. I have systemic mastocytosis. It developed after I was treated with two months of Levaquin and four months daily multiple applications of antibiotic ointments to a very deep ankle wound I received in a automobile accident on the same day Katrina hit the Gulf Coast. I was allergic to both, but the doctors didn't discern that and I had used them from the end of August until just before Christmas. It was imperative that the wound not become even slightly infected or I would have suffered amputation. I had immediately broken out in severe hives which was treated with massive doses of Benadryl, Atarax, and even Prednisone, once I began having respiratory distress, but they kept returning. I started having severe gastrointestinal problems, and massive fatigue and breathing problems and then the hives turned to various rashes immediately upon the successful treatment of the inflamed wound from the allergic reaction by a dermatologist. The rashes, gastrointestinal, fatigue, respiratory distress intensified, and I began to have cognitive problems. 13 doctors (various specialists), 1 Emergency Room visit, and one year after the original injury, I was clinically diagnosed with mastocytosis, after intensive research, and every test to rule out all other options the doctors could devise. Then, I lost my insurance benefits and my job after being out on disability for one year. See my first entry for the whole story. Hopefully, I will be able to see one of the specialists at the Mayo Clinic or one of the other facilities one day, if that's possible for someone poor and with no insurance, but I have almost every symptom. I respond wonderfully to treatment with Gastrocrom, which I was able to afford one month before I lost insurance, and greatly helped by a number of other meds. Currently, I am trying to medicate with OTC and what RX's I can afford. I have started this blog to help document my symptoms, store my research, and tell my story.
Some Basics FOR THE DOC
- Mixed organic brain syndrome as a manifestation of systemic mastocytosis
- Brief introduction for new patients and doctors who are unfamiliar with the management of mastocytosis
- U-M tackles mysterious, potentially fatal diseases caused by too many allergy cells (Contact info for Dr. Cem Akin)
- Mastocytosis by Daniel Hogan MD (eMedicine)
- Mastocytosis/ Mast Cell Activation Disorders
- Transcript of the Panel Discussion Q & A from the 2005 TMS Annual Meeting
- Transcript of the Panel Discussion Q & A from the 2004 TMS Annual Meeting
Research Resources and Miscellany
- Sloan-Kettering on mastocytosis
- Discussion group on mastocytosis
- Curbing Mast Cell Excess
- PLWC Guide to mastocytosis
- Mastocytosis Information
- Facts About Pruritis
- Anaphylaxis: diagnosis and management
- findings move researchers another step closer to understanding the life cycle of mast cells, researchers demonstrated the means by which a cytokine called interferon gamma (IFNy) induces death of developing mast cells
- Which adults with acute diarrhea should be evaluated?
- Urticaria pigmentosa
- Urticaria and angio-oedema
- Patients followed by Cleveland Clinic clinicians for mastocytosis
- European Competence Network on Mastocytosis (ECNM)
- Rare Hematologic Disorders
- Serotonin Newsgroup Discussion
- The diagnosis and management of anaphylaxis: an updated practice parameter
- Postgraduate Medicene - Osteoporosis causes - mastocytoisis
- Pediatric Mastocytosis
- Orphanet - About rare diseases - mastocytosis
- Multiple Chemical Sensitivity
- CureZone.com - Mastocytosis Prevention & Cure
- MedicineNet definition of mastocytosis
- Mast Cell Disease - The Doctor's Doctor
- An attorneys masto story
- Dr. Dean Metcalfe interview
- Federal Register DHHS NIH Prospective Grant Use of Geldanamycin and its Derivatives for the Treatment of Cancer "may prove to be useful for treating diseases such as mastocytosis"
- Flushing from The Cleveland Clinic
- WHO classification of mastocytosis as lymphoproliferative disease
- Homo sapiens diseases - mastocytosis
- Flushing
- British Assoc of Dermatologists Clinical Guidelines
- HealthBoards members Q & A
- Clinical & Experimental Allergy
- Autoimmune Skin Center
- Mast Cells and Mastocytosis..., (book) by Cem Akins on Amazon
- Allergy & Asthma Disease Management Center Q & A
- A Practical Guide to Anaphylaxis
- ClinicalTrials.gov - Current clinical trials recruiting for mastocytosis
- National Library of Information Gateway
- Johns Hopkins Masto Genetics
- National Institute of Allergy and Infectious Diseases, NIH, Mastocytosis
- NORD Orphan Drug Coverage in Medicare Part D Formularies
- National Institute of Health Office of Rare Diseases
- National Library of Information Masto Books & Pubs
- PubMed Masto Articles
- Genetics Home Reference - Mast Cells
- National Library of Medicine Medical Subject Headings
- Diagnostic Value of Tryptase in Anaphylaxis and Mastocytosis by Lawrence B. Schwartz, MD, PhD
- Disability Resources on the Internet - one stop shopping!
Strictly Hardcore Medical
- Increased urinary methylimidazoleacetic acid (MelmAA) as an indicator of systemic mastocytosis (SpringerLink)
- Systemic mastocytosis presenting as profound cardiovascular collapse during anaesthesia
- New England Journal of Medicine - link to PDF of case study
- SpringerLink - mastocytosis articles
- Bull's-eye lesions: A new gastrointestinal presentation of mastocytosis
- Systemic mastocytosis, Extracutaneous manifestations
- A new variant of mastocytosis
- A practical guide to anaphylaxis
- Mucosal Mast Cell Counts in IBS-D
- 4 rare diseases which have a common link—alterations in platelet derived growth factor receptor (PDGFR) and cKIT
- Anaphylaxis: can we tell who is at risk of a fatal reaction?
- Case Study
- Chronic Urticaria
- Emerging Stem Cell Therapies
- Recent Advances in the Disgnosis and Treatment of Hypereosinophilic Syndromes
- Urticaria
- Molecular Defects in Chronic Myeloproliferative Disorders
- The diagnosis and management of anaphylaxis
- IMVS Newsletter
- The idiopathic hypereosinophilic syndrome and
- OTC Indication for Chronic Idiopathic Urticaria
- Pheochromocytoma
- Fellows-in-Training Mastocytosis Syndromes
Medication Info
MastoWorld
Off Topic Favorites
Blog Archive
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Mastocytosis Information
The Mastocytosis Society,Inc. Information Sheet for Patients and Carers
This is a brief introduction for new patients and doctors who are unfamiliar with the management of mastocytosis. The information presented here, combined with that available in the cited references, provides a starting point from which to approach understanding, treating, and living with this rare disorder.
Mast cell disease, or mastocytosis, is characterized by the proliferation and accumulation of mast cells in a variety of tissues and can affect either sex at any age.
Definite diagnosis is made by demonstrating an abnormal accumulation of mast cells in a biopsy, usually of the skin and/or bone marrow.
Other causes for symptoms should be ruled out, and blood and urine testing for mast cell products may be suggestive of the diagnosis. When performed properly by experienced personnel with access to current information on recommended protocols the results of these tests will be useful in diagnosing and evaluating mastocytosis.
Mast cells are widely distributed in nearly every organ of the body, mainly close to blood and lymph vessels, nerve endings, and skin and mucous membrane surfaces. They develop from immature cells produced in the bone marrow, which migrate to the tissues where they mature.
Mast cells produce various chemicals which normally serve protective, inflammatory and regulatory functions as they interact with white blood cells and tissues. In mastocytosis these chemicals, or mediators, are abnormally abundant and cause symptoms.
Mast cell products (mediators) Some mast cell products are stored in granules within the cell, and others are produced in response to stimulation by the immune system or by drugs, chemicals, or physical factors.
Below is a table of some factors which can cause mast cells to release their products. Stress, strong emotions and estrogen can increase their effect.
The products present in granules and ready for immediate release on stimulation include histamine, heparin, tryptase, and chymase. These chemicals cause, and to some extent regulate, allergic and inflammatory changes, and are involved in tissue building or repair. In response to immune system activation of the mast cell, arachidonic acid within the cell is converted into prostaglandin D2 and leukotriene C4, which restrict air flow in the lungs, stimulate mucous formation, and attract some kinds of white blood cells.
Mast cells also generate several cytokines, which are proteins that interact with white blood cells and tissue cells to continue the allergic or inflammatory response.
Symptoms The symptoms of mastocytosis vary from person to person and may occur as "attacks" or as simply fatigue and a feeling of ill health.
Over time, symptoms may become more frequent and more severe. The rate of progression differs from person to person, and there may be an improvement in symptoms for long periods of time. The type and severity of symptoms can also vary greatly from person to person or from one episode to the next. Often, seemingly unrelated symptoms comprise an individual's personal pattern of mastocytosis.
These may (or may not) include: flushing (temporary skin redness), itching, hives,bruising, and skin sensations such as tingling. Other symptoms experienced by many of the people with mastocytosis are nausea,vomiting, abdominal cramping, occasional or frequent diarrhea, and excess stomach acid or ulcers. The person may experience unexplained fractures, mild to severe pain in bones, joints, or muscles, enlargement of liver or spleen, bladder pain, heart palpitations or rapid heart beat, chest discomfort, shortness of breath, light-headedness, fatigue,weakness, weight loss, respiratory symptoms including asthma. There may be depression, poor memory or irritability; also intolerance to heat or cold or to a change in temperature. Other symptoms include headaches,fainting or near fainting, and recurrent anaphylaxis.
Treatment Because there is not yet a cure for mastocytosis, treatment is aimed at reducing the frequency and severity of the release of mast cell products and at countering the effects of mast cell products which are inevitably released. Most patients will achieve relief of symptoms only by employing measures in both areas.
Avoidance of the factors which are known to cause a reaction for the individual patient, and cautious evaluation of other factors, such as those listed in the Table below, are important in the management of mastocytosis.
In using drugs to counter the effects of mast cell products,treatment must be tailored to the individual patient. Most commonly, H1 antihistamines such as chlorpheniramine or hydroxyzine are used to decrease the skin symptoms, vasodilation and mucous secreting actions of histamine. Stomach symptoms generally respond well to H2 antihistamines, such as cimetadine or ranitidine, which can also help reduce skin symptoms.
Aspirin or other non-steroidal anti-inflammatory drugs, if tolerated by the patient, provide relief from flushing and lightheadedness by blocking the body's production of prostaglandin D2. These drugs can cause unexpected severe reactions, though, and their use must be instituted cautiously under careful medical supervision.
Cromolyn (disodium cromoglycate) is a mast cell stabilizing drug which is frequently effective in reducing skin and gastrointestinal symptoms as well as mental and other systemic systems.
For severe diarrhea or malabsorption, collection of fluid in the abdominal cavity, and continued anaphylaxis which fails to respond to other measures, systemic corticosteroids may be required.
People with mastocytosis should carry injectable epinephrine, and they should know how to inject themselves if necessary to treat anaphylaxis.
There are other medications which may provide symptomatic relief if the ones mentioned above are ineffective or undesirable for a particular patient. No new medication or remedy should be started without careful consideration and close supervision, in case of an unexpected reaction.
Prognosis It is not yet possible to predict the course of mastocytosis in any individual person. When involvement is limited to the skin, symptoms may improve or clear entirely, but it is also possible for the disease to progress to the systemic form. In about half the young children affected, symptoms disappear as they reach adulthood.
When the mast cell infiltration is systemic, symptoms may progress slowly over many years or may suddenly increase temporarily or permanently. The patient may even progress to the more serious categories of disease.
For the small percentage of patients who develop an associated hematological disorder, the course varies, and the prognosis depends on the associated hematological disease. ( 2 )
It is very important for the patient and the doctor to maintain good communication and to work cooperatively to achieve the best possible symptom control. Communication with other doctors caring for mastocytosis patients, and with other persons who have the disease, is important in order to maintain a support and information network. The affected person, or the child's parents, should strive to become educated about mastocytosis and to be aware of their individual needs and responses to triggering factors. A recognized medical warning device, such as a MedicAlert bracelet, should be worn, and extra caution is needed when undergoing dental work or surgery.
The Mastocytosis Society provides education and support to people with all forms of mast cell disease and their doctors, encourages research, and hopes to help find a cure for the disease. The Society also maintains a list of consultants who are available to advise professionals caring for a mastocytosis patient.
Because of the rare nature of mast cell disease, we encourage doctors and patients to register with the Society in order to facilitate the communication and information exchange which will hasten the achievement of a cure.
Classification (adapted from (1) )
The following is a useful classification of the kinds of mastocytosis.
Cutaneous mastocytosis: Skin involvement only. This may include:
Urticaria pigmentosa: The typical rash of mastocytosis in the skin.
Solitary mastocytoma - a clump of mast cells restricted to a small area of the skin.
Diffuse cutaneous mastocytosis - skin involvement without urticaria pigmentosa or telangiectasia macularis eruptiva perstans (distinctive patches of discolored skin with small blood vessels on a reddened background. If the skin is heavily infiltrated with mast cells, the release of large amounts of mast cell products may cause systemic symptoms.
Systemic mastocytosis with or without skin involvement: Mast cell infiltration of at least one internal organ (like bone marrow or gastrointestinal tract). (2)
Mastocytosis in association with hematological disorder, with or without skin involvement: For example: leukemia, lymphoma, and myelodysplastic or myeloproliferative disorders.
Lymphadenopathic mastocytosis with eosinophilia, with or without skin involvement: Enlarged spleen and lymph nodes, infiltrated with mast cells, along with a blood count high in eosinophils.
Mast cell leukemia: This is rare but is the most serious form of masocytosis. The treatment and course of the disease is dictated by the leukemia.
Table of mast cell degranulators (adapted from (3) )
Allergens and other immunologic stimuli Exercise Physical stimuli (heat, cold, sunlight, friction, pressure, vibration) Bacterial toxins Venoms (snake and insect, especially bee and wasp stings) Biologic polypeptides (released by intestinal roundworms, jellyfish,crayfish, and lobster) Polymers (Compound 48/80, dextran) Drugs: Aspirin, alcohol, narcotics (codeine, morphine), polymyxin B,amphotericin B, D-tubocurarine, quinine, iodine-containing radiographic dyes, scopolamine, gallamine,decamethonium, reserpine.
References: 1. Dean D. Metcalfe. Classification and Diagnosis of Mastocytosis:Current Status. J Invest Dermatol 96: 2S-4S, 1991. 2. Linda Golkar, Jeffrey D Bernhard. Seminar: Mastocytosis. Lancet 1997; 349:1379-85 3. Jack Longley, Thomas P. Duffy, Steven Kohn. Continuing Medical Education: The mast cell and mast cell disease. J Am Acad Dermatol 1995;32:545-61
Last update 6th December,2004 Copyright 1998,1999,2000,2001,2002,2003,2004,2005©
42 comments:
just found your blog, sorry to hear of your $$ probs, but your descriptions are almost exact to mine. I hae been lucky thus far at keeping the cognitive problems in check and they don't impact work too much YET. I have Deg Disc Disease one back surgery and 4 more burst or bulging disks. The migraines are debilitating. Keep on going its great stuff. It's nice to know your not alone and there is someone else suffering the same. GREAT JOB!
Thank God everything's ok!! Hang in there friend!
That anonymous was Piia... i just cant... ;)
Glad to see you're ok... I was starting to worry... Glad to see that you've seen a doctor and are being taken care of...
You need to talk to your oncologist about Cladribine. This is a chemoteraphy drug that is active against mastocytosis, and is relativelly safe. Your case sounds serious enough that this can be used. I've had SM for 17 years, and my symptoms are not as severe as yours, still, Cladribine is my backup plan in case things get ugly.
Not many doctors know about it, but my hematologist agrees that this is the back-up plan should I get worse.
There is more info here:
http://bloodjournal.hematologylibrary.org/cgi/content/full/102/13/4270
Doctors can be reluctant to use it because they are not well-informed, and prefer the low-risk (for them) wait and see approach. Do the relevant research yourself, go to your oncologist and make it happen, don't take no for an answer, it will be a lot better than taking all the paliative drugs you are taking.
Good luck and Godspeed.
Any body out there with mast cell / systemic anaphylaxis want to talk??
Hi all from Singapore. I have been very sad for the past few weeks due to some personal problems. And today I feel that I can not handle my emotion and mind anymore. Out of desperation I just type "lose hope" in Google Image and thats how I found this blog. After reading the posting here I feel so ashamed of myself and then my hope is renewed. I am healthy physically but in the spirit and emotion, I am nothing compared to you guys that have gone through so much but can still keep the flame of hope burning. My sincere hope for a complete recovery for you all. Many thanks and God bless you all always.
To anonymous... talk about mast cells systemic anaphylaxis ? Yes, I have had two severe attacks in the past three months. I was diagnosed about twenty years ago, have been relatively stable with doxepin regime until now. Now have Rx Epipen, will see specialist tomorrow. Would be happy to talk with you regarding your case.........
Glad to see you are back!
Hi!
My son was finally diagnosed (again) with systemic mastocytosis about 2 or 3 months ago(I say again because it was suspected when he was 9 months old, but Johns Hopkins didn't think it was . . . long story). I was just reading your blog, and quite honestly it scares me! =0) Isaiah has had the blisters from rashes - your story is so similar to his. His rash hasn't completely gone away either - he still has patches on the soles of his feet, hands, and legs. Instead of 14 meds, though, he is only on 10. =0} I can understand the financial difficulties.
We will be praying for you!
Kelly & Isaiah
Hi! I also have systemic mastocytosis and live in Greenville, South Carolina. I am pretty sure now, looking back, that I was born with it. When I was 30 I broke my back twice in 6 months which prompted my doctors to keep testing me until they figured out what was wrong. I started out with the cutaneous version, but we didn't realize that was what it was either at the time. I have experiences with doctors at NIH and the Mayo clinic. My doctor here was at M D Anderson in Houston prior to moving to Greenville. Presently I am on Pegylated Interferon A-2B in addition to many other drugs. After hearing some of the other comments, it sounds like I have been a little more fortunate with symptoms, insurance, and doctors willing to try to figure me out. We laugh about me being their "science project". I haven't come across anyone yet that I know personally with Mastocytosis. My tolerance to drugs is incredible so I am still working full time. I work from home as a computer analyst so that really helps with the not so good days. My doctors are amazed at how well I am tolerating the interferon. If any of you have mastocytosis that affects your bone marrow, severe osteoporosis, or just anything in general, I will be glad to answer any questions if it would help. I am 57 now and still going strong. As you know the treatment options are limited and sometimes a process of elimination, not to mention the expense of the testing to begin with. I hope your health and financial situation improves.
Hello! I'm in the Anchorage, Alaska area and 3 yrs into the masto mambo. I love your blog and hope you're feeling well. Best of luck. - Alaskini
Hi!
I'm in China, and very glad to find your blog by chance. I have a friend who also got this disease,systemic mastocytosis. But in China,this disease can't be treated,even in the most famous hospitals. We are anxious to find someone who can help him, provide some information about the medcine or how the patients can be cured in your area.
HEIP!
Mr. BlueKat,
We want your help! I'm looking forward to receiving your reply as soon as possible. Would you please send the information to my email: ruirui.yu@eyou.com
Thanks a lot!
My 15 month old daughter was born with Diffuse Cutaneous Mastocytosis. It's been pretty bad but we seem to be getting to a good place now. I've opened a facebook group 'Support for Stephanie' and there are some links to some of the publicity we've been doing at the moment. She's had a pretty bad time with prejudice due to the visual extent of the condition so I decided to campaign for awareness. Please join her group if you have a facebook account. I'll try and send you an invite but I'm a bit of a technophobe! We're going to a workshop in Spain soon to see Dr Marianne Castells and Dr Luis Escribano - I'll be putting a full update on the site. We're up to some pretty good stuff in the UK and more doctors are becoming aware - we are working towards a medical network for Masto so fingers crossed for that.
Take care and keep sharing - it's the only way to fight this condition. Maria
Without knowing much about your case have you considered that your "cure" i.e., 14 pills a day, is making you worse? All those drugs have heavy side effects. With all the medicine you are taking at this point who can differentiate between an actual health problem and a side-effect from the drugs that you are experiencing. It's been my observation that people who live long healthy, productive lives stay away from doctors as much as possible.
BTW, I was diagnosed with mastocytosis 20 years ago and take no drugs.
@ anonymous,
well you are very lucky to not have to take medication. bear in mind that there are many different forms of masto with varying degrees of severity. For myself, I know that I am on way less medication than other people with it, but obviously on far more medication than you are.
Your experiences are anecdotal, while medicine is a science proven model. While what is working for you is working for you (and that is excellent) that is not the case for everyone. I know for myself, I was in far worse condition (shocking every day, suffering from malnutrition due to the damage h2s had done to my stomach) before I started my medication than I am now. Is it an optimal situation? No, but I'm far healthier now than I was then.
Also, for the record, there is no cure for masto, and none of the medications any masto patient takes are touted as such. All they do is try to treat the symptoms to make the patients comfortable.
I truly pray you are still kicking? I was diagnosed with Masto when I was 22 and now I am 43. It sux but has taught me to appreciate the few good things in life and the very few good days! I just found your blag and admire you so much for putting your struggle out there for us. You are helping so many people.
Peace,
Marcie
Just wondering if you are going to continue blogging? I really appreciate your blog and see that it has been a year...Just wondering when we will hear from you again?
I have a few questions:
1. Does serum tryptase level necesarilly correlate to amount of disease? I have read that it does, so does a tryptase of between 20 and 40 indicate indolent systemic or could it be a more sever form?
2. What does thes results mean?
MCH high
MCHC low
Lymphocytes low
INR low
Urea nitrogen high
sodium high
Creatine high
CBC set high
ECO2 low
HGB low
C3 very low
C4 low
Alanine amino SGPT low
Alkaline phosphatase high
T4 low
IgM off
urine hazy with epithelial cells and 2 + bacteria
Hemoglobin in urine +1
Thanks
I was tested 3 days ago for mastocytosis and am waiting on the results. I have been showing all the symptoms since July when i was sick with bronchitis. I was given Levaquin also. I have gone into anaphylatic shock 4 times since then. My doctors all said allergies with an unknown trigger. I finally did my own research and discovered mastocytosis. My family dr agreed that i needed tested. So i am waiting around scared out of my mind. Reading that Im not alone is a great comfort to me. Thank you
I am a 19 year old suffering from this disease. I cannot seem to get rid of flushing and burning sensation. Since you have a lot of experience I figured you might know what is the best medications to get rid of these symptoms. I applaud your braveness in your blog and wish you the best. Thank you.
Superb blog post, I have book marked this internet site so ideally I’ll see much more on this subject in the foreseeable future!
I currently have indolent masto but trytase has been increasing every year. Would any of you tell me what your tryptase levels are? I have also been getting weekly acupuncture treatments for a year and a half now. I get most of my spots on the chest and acupuncture has helped get some of the 'heat out' so my reactions are not as severe. If I scratch any of my spots they still blow up 10X though, and my symptoms waiver substantially from ruining my life one week, to being totally livable the next. I am also glad to know I am not alone in this, I would greatly appreciate it if someone would share their tryptase level with me so I have some point of reference. I see a specialist in Denver at the University of CO hospital, but my insurance runs up at the end of the month!!!
Hello, I was diagnosed with Mastocytosis about three years ago (however I had the "cheetah spots" as i lovingly call them, since i was a young child). After i got "diagnosed" my own doctor didnt know what this disorder was so she did nothing for about two years. About a year ago i finally went to see the onchologist (sp?) who did the bone marrow test and diagnosed me with the first stage of the second type of the disorder. I guess its in my bones but not in my organs. I havent experienced any serious physical effects (not to be graphic but once in a while when i get very excited or nervous i get these "gag attacks", it feels like someone is putting pressure on my gag reflex--i told this to all of the doctors but they dont know what causes it--has anyone else experience this side effect? Also, beside the "cheetah spots" i have never had any acne or even regular pimples when i was growing up and now i'm 25 and i cant get rid of them! I switched my face cleaning producs, i tried not to use any at all and nothing helps. Its embarrasing enough to be a 25 year old woman with a bunch of red/brown "cheetah spots" on my face and now i have to deal with actual pimples like a 14 year old boy who is going through puberty! Does anyone know if these zits are mastocytosis related? And if so how can i get rid of them?? Any advice is very much appreciated!
thank you!
K
I'm an 18 year old female with bullous mastocytosis. I've had it my entire life and it has flared up severely during puberty and, quite conveniently, during major transitions. (Elementary to middle, middle to high, high to college) When I was young (5) I had masto spots on ny body. they were few in number and looked simply like mosquito bites. they faded with age but will flare up when I have a reaction. I have 4 pages of allergic triggers that vary in degree, and I have increased greatly in sensitivity since I was young. Reactions used to be indicated by itchy eyes, hives, etc. Now all reactions are immediately internal, throat and tongue. Just lately I have been graced with a burning, feverish sensation on my face that doesn't want to leave. I am currently on Gastrocrom 4X a day for chronic severe nausea and Cingular/Zyrtec for chronic allergy symptoms.
Anonymous, my spots went away when I was quite young This is a rare and fortunate occurance . I have been told that if they do not leave at a young age, they are there to stay. Your pimples are almost certainly Masto related, as masto spots are often described as blisters.
well, kat, i hope you're not doing badly at this late date. there are a lot of people apparently that utilize and enjoy your blog - me being one of them.
i remember that at one point you were wishing to visit mayo. i did, and the guy just handed me an antidepressant, saying nobody knows what to do. actually, if you go to the right place, people DO know what to do, and i think it was just HIM that didn't know what to do. so, do your reading before you get up the wherewithal to go anywhere.
as for previous comments re castell (sp) and akin and theoharides - all around boston - these are people that know what they're talking about.
when i was searching for what was wrong with me, i made a couple of big trips to academic centers - i have no money either, but amtrak, though it's most definitely not a fun experience, is reeeally cheap. also, often the centers will know of people who host patients in their home for free or a low fee. i really hope you're past this stage though, and doing well.
no pressure about posting again, but know that you've got people out here thinking about you and wishing you well :)
Does anybody know what happened to this person? I have a family member going through the same thing. I'm scared to ask but at this point I'd like honest answers.
Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
Bless you sweetie. Look up "floxed". Levaquin, Cipro and that class of antibiotics has major class action suits against them. They are either triggering masto or causing a similar physiological condition. I wish you the best.>>>>>Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
I hope you found answers. I don't know them but bless you and I wish you the best.>>>>Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
I do so hope Stephanie is better. Bless her and your family.>>>>> Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
We are all brave in our own ways. Bless you.>>>Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
Hi Piia!>>>>Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
Hi everyone! I'm Kathy (BlueKat) and I am shocked to see that there were still postings as of 2015. I had to abandon my blog when my mother began needing more care from me than I did from her - which you can imagine. She passed at age 90 about 18 months ago and I am slowly getting my life in order. Very slowly. Not much has changed for me as far as the disease except that it slowly progresses. I'm about at the limit for medicine so although I have always monitored my diet and avoided all things that I could definitly know affected me, there are foods that are naturally high in histamine that I am trying to learn more about and avoid. There are 573 mediators involved in triggering masto symptoms though, which is not a widely known bit of info on the net. Everyone thinks histamine and histamine only, but education and treatment is a constantly ongoing process. I am up writing now because I woke up at 3 a.m. with itching and serious bone pain. If I can get to a place where I can start blogging again I will let you all know if anyone ever visits again. I'll let tmsforacure.com know and they may note it somewhere. That is the go to site for information. It is the advocacy group for mastocytosis. Take care everyone and thank you. I will set up a current email and let you know it if you ever want to contact me.
https://youtu.be/Owtt8NO7ahU
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I’m Stephenie Brown, i was diagnosed with Hepatitis B 3 years ago, i lived in pain with the knowledge that i wasn’t going to ever be well again i contacted so many herbal doctors about herbs to cure me and ended up spending some amount of money but i never got better i was determined to get my lifestyle back and to be able to do things am restricted from doing so one day i saw a lady’s post on how Herbalist Dr. JAMES cured her from Hiv virus with his herbal medicine. I contacted the same Doctor through his email....drjamesherbalmix@gmail.com....we spoke, i told him all that i was going through and he told me not to worry that everything will be more better again so he prepared a herbal medicine and send it to me through DHL courier company and told me the dosage,after 13 days of completing the herbal medicine,i was totally free from Hepatitis,so I went to see a doctor for a blood test ,After taking a sample of my blood for the test the result came out negative,i just can’t deny that i’m the most happiest woman on earth this very moment ,i’m so happy and thanks to Herbalist Doctor JAMES
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True life changing story of COPD.
My father was a smoker for forty years. He started when he was a teenager in high school in the early 1950s, and continued to smoke about a pack a day until he quit in 1995. For years he thought "You know? 1 smoked for forty years, and I got away with it !" No. No he didn't. In 2014, nineteen years after he had quit smoking, he started noticing that he was having trouble with wheezing and feeling like he was out of breath a lot. He was diagnosed with early stage COPD. For the first year, he was able to get by with simply using rescue inhalers once in a while, but by late 2015 he needed supplemental oxygen. At first, he could get by on the lowest tank setting of 1 liter per minute, but as time went on he needed an Oxygen concentrator at home and he needed more and more oxygen. Last year (2020) he was up to the oxygen concentrator's highest setting of 5 liters per minute, even while just sitting down. By this time I had moved in with him to take care of him. Sometimes he would be gasping for air, and he would ask me "Son, is the machine on? I just can't get enough air" his condition worsened, our hearts melted every moment as we watched him gasp for breath,we were sure he would die any moment, by the time I started reading YouTube comments,I stumbled upon a comment that said there is an traditional herbal doctor called Dr Itua Herbal Center man that cures this ailment and other human diseases,I quickly contacted him and ordered the herbs with my father's money because he wouldn't need it anymore cos he would die any moment,I received the herbs in two days and from that moment he used the herbs, he began to feel better and better, few weeks later, he was completely cured, I thank you for reading this story about my father's experience with COPD. If you know someone who is a smoker, and you love them, please encourage them to quit. We love Daddy.all thanks to Dr Itua.
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