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New Territory (Read 2220 times)
Susan
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New Territory
04/25/11 at 14:36:44
 
Hi! I've been chronically ill for almost 18 years now, but am just beginning to pursue the possibility of having a mast cell disorder.

Before I go into my history, can anyone tell me how to turn off all the flashing red things on the forum? I've been reading here for a while, but only when joining did I see everything light up. I get easily triggered into migraines with flashing things, and need to turn those off to be able to look at the subforums.

Thanks!

So, I was a very allergic child (we won't mention how long ago that was!), with lots of swelling and hives and rashes. As I grew older, I developed more hay fever like symptoms, and the other symptoms calmed down. When I moved from the Midwest to California in 1989, I was delighted to find that I no longer seemed to have hay fever or other obvious allergies.

In 1993, I moved with my husband and son into a rental house that was very moldy, and became extremely ill. That was the beginning of my long journey through what I call the ABCs, or the acronyms of an endless variety of diseases and syndromes.
I was eventually found to have late stage neurological infections (Lyme, Bartonella, and Ehrlichea or TBDs) that came from tick bites. I've been under treatment now for almost six years, but as they were well established before being diagnosed, we don't know if they will ever be completely cleared, but treatment has helped.

However, part of my symptoms includes being extremely sensitive to all kinds of exposures and chemicals. We always called it multiple chemical sensitivity (MCS). About two years ago I had an exposure to paint stripper at my work, and my health has not recovered.
My lungs felt like they were burnt, and I developed shortness of breath and tachycardia, even at rest. I have had reactions like this before, and eventually they get better, but this one never did.

So I started the diagnosis rounds again. They didn't think I had asthma, but the testing showed definite abnormalities. They finally decided I had exercise induced asthma, and put me on inhalers.

The chest pain did not improve, so I saw a cardiologist, who found I had a patent foramen ovale (PFO -hole in the heart.) With exertion, I was at grade 5 (the worst) for shunting blood from one side of the heart to the other. This could explain the shortness of breath, and I was sent to be evaluated for a patch. When I found the patch was made with nickel, I asked to wait and be re-evaluated, as I am highly reactive to nickel. I couldn't imagine having it implanted in my heart! The cardio doc agreed to re-evalute me in six month, and put me on blood thinners, because the PFO (you starting to see the ABCs here?) puts me at risk of stroke.

Because I am allergic to NSAIDS, we decided to try heparin injections.
I tried the heparin, and several other options my primary came up with. All of them caused problems with my gut, with swelling of the GI tract, and eventually bleeding. Once stopping the meds, it would take time for the swelling to recede.

Finally, my re-evaluation for my heart issues was coming back up, and I was concerned. My shortness of breath was still very bad, and I was having swelling in my throat, enough that sometimes I had trouble swallowing. My chest ached all of the time, and sometimes I had knife-like pain in my back, through into the sternum area. My heart rate was running 100-120 even at rest, and any activity jumped it even higher. My hands and feet were swollen, and sometimes I couldn't get my shoes on. And I was TIRED. Really tired, all the time.

My primary doctor, who treats the infections, wanted me checked to see if anything else could be causing the chest pain. He is very concerned about my ability to tolerate a heart procedure, even if it was a catheter procedure, not open heart, and there is the nickel issue. So he had a physical therapist work with me, to see if it was anything structural. She told me she could feel my esophagus was twisted, and thought that was causing the chest pain. It had never occurred to me, but I was willing to see where it went.

After the session, which had been extremely gentle. I started to have increased pain. It had been a while since I had a physical adjustment, and I forgot I always tend to have increased pain afterward. In a few hours, I was in excruciating pain. My nervous system felt like it was on fire, and my skin was tender to the touch. I was also much more rashy that usual, with itching all over my body.

Finally, three days after the treatment, I was getting ready to go in to work, and suddenly my throat started swelling, even more than usual. My skin was itching like mad, and my heart started racing. I was having trouble breathing, and was having a hard time thinking. I took some Zyrtec, and used my inhaler, and called my doctor’s office. I must have sounded pretty bad, because they told me to go in to Urgent Care, ASAP. I was feeling a little better, and didn’t want to call an ambulance, so I went to the Urgent Care around the corner.

It took them a while to see me. By that time the worst symptoms had subsided, and I was just shaky and chilled, and still having a hard time thinking. They gave me a lecture (for going there instead of ER), told me to take Zyrtec every day, get an Epi-pen, and see my doctor.

When I got home, I started doing research. First I looked up the esophagus issues, which led me in several directions, including mast cell disorders. With that, it felt like a light went on!

All of my most bizarre symptoms seem to be here, and even make sense. All of my reactions to things normal people can’t smell, and aren’t bothered by. All my extreme sensitivity to everything. The exercise reactions, everything that doesn’t make sense to the doctors. Even the swelling in my belly when I breathe chemicals made sense here. So I decided to try the antihistamines, including Zantac. Was I shocked! So many symptoms improved! On Zrytec twice a day and Zantac 150 three to four times, my shortness of breath is gone, my chest pain is under control, my tachycardia is almost gone, my blood pressure is more stable, and even my long term, intractable constipation (supposedly cause by pain meds) is almost gone. I thought diarrhea was more mast cell like, but I found GI paralysis is also an effect of mast cell problems, and that is what the docs say is one of my gut problems. Until it stopped, I had no idea how much abdominal pain I was living with every day.

Wow! This story goes on and on, but I guess I have been sick a long time.

Last Friday I saw an allergist. I had been reading up, and was all set to fight to be tested for mast cell issues. I’m used to fighting, as it seems all my disorders are designer only. I never seem to have anything ordinary wrong with me. But to my surprise, when he had looked over my health history, and what had happened recently, the doctor began to explain to me about mast cell disorders, and how rare they are, but how he felt it should be looked at in my case. He is also going to test for carcinoid (?) and simple allergies as well. He didn’t give me a hard time about not stopping the antihistamines before the appointment, just said we would do blood tests.

Hallelujah!!

I don’t know for sure how knowledgeable he is, but I heard there is a mast cell specialist down at Stanford, which is a few hours drive from where I live.

The allergist did not have the test numbers in the office I was seeing him in, so is supposed to mail me the test requisitions. I plan to go to get them done as soon as I can. He told me to keep taking the meds I am currently taking, they should be OK for me. I am hoping they can find something to help with the skin issues I have, as those have not improved yet, but for now, I am not complaining.

OK, if you made it all the way through this, I do have a question. Though I wouldn’t wish my health issues on anyone, it does look to me as though most of you have more issues with anaphylaxis than I do. I have only had two episodes: One after taking bee pollen, years ago, that was very clear. That had rapid onset, whole body flushing (beet red and HOT all over), fainting, loss of blood pressure, and tachycardia. My husband was a physician, and did not take me to the hospital ( yeah, that is part of why he is no longer my husband), but I was OK afterward. This more recent event was not as extreme, maybe not even approaching anaphylaxis, though I understand it has a broader definition now.

Do many people with mast cell disorders NOT have anaphylaxis type reactions? My symptoms seem more just constant and relentless, but not so life threatening. It is true that I have my life very controlled now to avoid triggers, as I haven’t worked full time for many years. But I just wonder if you can have mast cell problems, and not shock?

I’m sure I will have more questions soon, but I want to thank everyone who shares so much information on this board. It makes a big difference to have a safe haven to come and share concerns that others cannot understand.
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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Lisa
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Re: New Territory
Reply #1 - 04/25/11 at 17:02:03
 
Sure Susan, you can indeed have masto without having the shocking.  We call those patients, leakers, for it seems that their mast cells are always leaking.   Those who shock are called shockers because their mast cells release an acute amount of mediators all at once.  

There is still a lot which is not understood about mast cell disorders and one is why it is that some patients will have certain areas which seem to be their weak spot and that these spots are what are most of the time causing the trouble and what is it that will make some patients have really aggressive behavior but not aggressive disease?   So it would only go to follow that some of us are going to be shockers, others just leakers and others who are a mix of shockers and leakers.   There are even cases of aggressive masto which is when the disease is in it's deadly form, and some of those patients will have very little activity, but serious damage to their bodies and the damage is only seen after the disease is well progressed!   These things the researchers still don't understand about the disease!!!  And we patients can only guess!!!


I hope this helps!


Lisa


PS - welcome.  I'm glad you found us.   I hope we can help you!

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Don´t forget, there is so much more to life than being sick!
 
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Sandi
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Re: New Territory
Reply #2 - 04/25/11 at 19:27:25
 
Susan,
Welcome! I also have Multiple Chemical sensitivity.Or should I say was diagnosed with it, yest that's what it is but it is triggers to the chemicals degranulating my mast cells.  I think in the future Multiple Chemical Sensitivity patients will be linked to Mastocytosis. I seriously sat in shock when I read the trigger list for the first time on the tms site. I was pretty angry that docs didn't even consider masto for me in the 80's.and 90's even early 2000. The only people treating MCS were in the holistic world. Truthfully there was hardly any info out on mastocytosis let alone knowledge of it from your common doc. including allergists.
It's still difficult but nothing like back then.  
Have you read the anaphylaxis symptom list? Many are very unaware that you can be breathing and still go into anaphylaxis. The reason I'm going into this is your "MCS" symptoms.... when you are exposed to the chemicals you react to, perfume lets say, what happens?
For me, it can be a combo of things, sometimes the burned esophogus feeling and windpipe, most of the time the room begins to spin, my ears ring, serious stomach pain, extreme nausea, flushing, if I cannot get it under control I move into vomiting (severe) diahrrea,  low bp , I'm shivering, bluish, and can still breathe, and literally just exhausted, I feel like I could just  slip away and meet the grim reaper. I was fully unaware that is anaphylaxis!  Most MCS patients have severe reactions to the basics in life. So I'm checking that you are aware that you can have full blown anaphylaxis and still have an airway and not be wheezing. Here's the list from the NIH and note in the description they may include the following:
Symptoms develop rapidly, often within seconds or minutes. They may include the following:

   *

     Abdominal pain or cramping
   *

     Abnormal (high-pitched) breathing sounds
   *

     Anxiety
   *

     Confusion
   *

     Cough
   *

     Diarrhea
   *

     Difficulty breathing
   *

     Difficulty swallowing
   *

     Fainting, light-headedness, dizziness
   *

     Hives, itchiness
   *

     Nasal congestion
   *

     Nausea, vomiting
   *

     Palpitations
   *

     Skin redness
   *

     Slurred speech
   *

     Wheezing

Signs and tests

Signs include:

   *

     Abnormal heart rhythm (arrhythmia)
   *

     Fluid in the lungs (pulmonary edema)
   *

     Hives
   *

     Low blood pressure
   *

     Mental confusion
   *

     Rapid pulse
   *

     Skin that is blue from lack of oxygen or pale from shock
   *

     Swelling (angioedema) in the throat that may be severe enough to block the airway
   *

     Swelling of the eyes or face
   *

     Weakness
   *

     Wheezing

It's very exciting your current docs are willing to look into Mastocytosis. Now just make sure they are educated or it will be a waste.  The greatest example is they take a tryptase and it is normal and then they tell you nope it should be above normal for mastocytosis.  Not true. So possibly if you can get to the experts so you are tested properly or make sure your physicians do talk to an expert.

Walking into the world of antihistimine treatment of a mast cell disorder has helped me more than anything I have done. With exception to food elimination. Don't get me wrong, I still can't sit in a room with someone wearing Coach perfume, I react to the common detergent scents on people, vinyl shower curtains, the latex in a laptop case, I will begin to go quickly I medicate and get out of the situation and it doesn't become as severe. However if I stayed in the situation or exposed to said offender it  would become a trip to the ER.
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Susan
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Re: New Territory
Reply #3 - 04/25/11 at 22:32:48
 
Lisa, thanks for the info on shockers and leakers. I have seen little bits of this reading through the forum, but can never quite get it all down. The shockers are so dramatic, and it is so obvious something is wrong! I've lived with an invisible disability for so long, sometimes I wish it was a little more obvious. Not that I think what you go through is easy. Not at all! It just seems some might understand better if you could see right away that there is a problem.

I've learned not to back off just because something I have doesn't sound exactly like the classic case. It never seems to be, for me, so I have to keep pushing the doctors, or I would have been gone a long time ago.

Sandi,

Thank you for all the info on MCS. YES, this is the thing that most hit me when I looked at the list for Masto.

I have a wide array of reactions to chemical exposures. Lately, I tend to get chest tightness and /or pain, but no wheezing, which is why they didn't think I have asthma.

But I also get :
severe migraine headaches, with visual auras
flushing
confusion
depression
fatigue
sometimes emotional reactivity
panic attacks (sometimes hours after the exposure
swelling in my throat
swelling in my abdomen, and bowels
bowel spasms
abdominal pain
flu like muscle pain
itching
dizziness
tinnitus
eyes swell and redden
face swells
hands, feet swell
coughing
nausea
tachycardia
fall asleep sitting up
blood pressure is erratic (up and down very rapidly)
sinus pain
more recently, swelling in my throat, trouble swallowing

Probably even more symptoms that relate to exposures, but with other illnesses, it can be hard to be sure what causes a symptom. Especially when I have delayed reactions to things.  But yeah, sounds like I have the symptoms, though many are not visible to others. Even the swelling, most doctors discount. They think my face is just fat, and my feet are fat, or I am getting fluid due to lack of exercise. It isn't pitting edema, so they don't recognize it. But when my feet go back down, and I can recognize them again, it is obvious there is a huge difference. Same with my belly. I can go from normal slightly overweight, to 7 months pregnant in no time.

BUT I don't have symptoms that send me to the ER. My main doctors are kind, but don't really know how bad things can be with constant pain and reactivity. I have been ill enough that I don't go out much, so I am protected from many exposures.

When the neighbors do the laundry, I have to shut the windows. All my friends use unscented shampoo and laundry products. My landlady has made this a no smoking building. The part time I work, I work in a doctor's office that sees chemically sensitive patients, so it is pretty good, but still people walk in with perfume, or someone uses cleaning products, and I am down for the count. It was trying to tough out exposures that got me worse. Now, if something is there, I just walk out. I found I was going downhill too badly to afford it. I had been thinking it is just a minute, but that minute has a lot of consequences.

So, it is clear to me that I react. Bu as I am sure you know, doctors tend to see the list of symptoms and think they are seeing a wacko.

Sandy, how can you tell if it is full blown anaphylaxis? Like, what if I just have swelling, or abdominal pain, or headache? I always thought it had to be life threatening, or at the very least you were going to pass out. I don't faint, but I do have problems sometimes with falling asleep during the day, where I cannot stay fully conscious, but I don't totally pass out. I just sit and keep nodding off, waking up, nodding off. I've checked, and it isn't blood sugar or blood pressure. But it doesn't relate to how tired I am, so I finally figured it must be some type of reaction. Other than that, I don't have things that would send me to the ER.

I'm really glad to hear you have improved on treatment. I have only just started taking meds, and I am still being very careful, and can tell I am still reacting. Was there something specific that helped with the MCS?
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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Re: New Territory
Reply #4 - 04/26/11 at 03:51:17
 
susan:
Sounds to me you are more like me, I'm a leaker. The difference is my masto is centered in my skin as according to my doc have had the ckit mutation. This means that my body recruited normal cells to be mast cells because of some unknown treat. These mast cells though are not right and constantly leak thus giving me a more chronic conditions than the shockers that end up going to the hospital lots. I have been to ER only once since this started and that was from severe skin pain early on & looking back on it, I got a sunburn was all it was. I also only a couple times in over 5 years actually had an outbreak of UP, but it lasted less than a month, so I know you frustration of the disease being so much internal and yet on the outside appear so normal. One of the keys for me was the addition of gastrocrom to me meds. It is mast cell inhibitor, so it tries to control the mast cells. i recently tried addin another one called ketotifin, but I think the inactive ingrediants got me.
That's part of the problem is that each of us is individual. The docs can help but you have to be your own investigator as you live it every minute & you see the docs every so often. It's a frustrating process but there is no easy formula.
Good luck
Mike V
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Susan
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Re: New Territory
Reply #5 - 04/26/11 at 07:09:10
 
Thanks, Mike! You are giving me more hope. The skin issues have not responded to the antihistamines, so I am glad to hear that something else might help. I'm used to being my own investigator. In a way, it feels good to be able to find things out on your own, but also scary.

I always worry that I will miss something important, due to not being educated well enough, but I guess it is not much different than the doctors. I am amazed at things they miss, or prescribe wrong. Just have to make the best of what I have.

Mike, do you have the darker mast cells on your skin? Did they have to do a skin biopsy to diagnose the ckit, or does that get found in the BMB too?

Do you have trouble with touch? One of the most frustrating symptoms I have, is the reaction to touch. Sometimes my skin is very sensitive, and light touch hurts. But other times, the touch feels good at the time, but triggers terrible pain later. This is mostly when they are trying to make changes, like during a massage, or an osteopathic manipulation. The pain seems to be in the nerves and the muscles too, so not just skin, but the skin gets very hypersensitive, and swells. It has always seemed very strange, but now I wonder if it is a mast cell reaction.
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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Re: New Territory
Reply #6 - 04/26/11 at 14:59:37
 
susan:
my skin doesn't seem to respond either. But I think it does keep the few outbreaks that I have to a minimum as pain escalates during that time. Gastrocrom has helped my skin some but in the brain fog area it's worked great.I have one dark area only on my arm. I do get some growths that grow then drop off. My doc said that he didn't need either a biopsy or BMB to diagnosis me as SM due to my inflated tryptase level of round 20. Will be doing both when the new drug on the horizon mastinib gets approved as will have to have ckit proved to use it.
Yes I have a lot of trouble with touch. My skin pain is chronic. It just varies in intensity. Uusally the worst is at night or have the flu or something that gets the mast cells going like stress. My savior in the clothing area is silk. I wear silk under my shirt also my pants. Helps a lot but nothing does much good for the feet which is my worst. But makes sense your feet have the most pressure on them. I also take tramadol for the pain. I went through almost every pain killer known as I'm totally nasids intolerant and it helps take the edge off the pain, but only the edge. Ask me any questions that you have, I'm no doc but have been working with my masto for 6 years. As my masto doc, who is an excellent allergist says to his interns, sometimes to try to put me in my place & remember the doc patient relationship, say for his interns to ask me any questions about masto. I have to remind him, but he knows, we have at times a strained relationship due to my asking lots of questions & making recommendations to him rather than the other way around. But I tell his interns I am an expert only in my version of masto only and the things that I don't know are many as my masto seems to change on the fly very easily.
good luck
Mike V
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Re: New Territory
Reply #7 - 04/26/11 at 17:24:31
 
Susan, I'm the same with the laundry detergent! I live rural and my backyard reeks like the neighbors scented products. I've been chemically sensitive for 20+ years but the stuff they are putting into the laundry detergents now are just ridiculous. I'm on two acres and the whole yard will smell like it. Like you then I am forced indoors. Windows closed here also.  I now can pop an extra allegra/just found a ranitidine I tolerate and it helps, sometimes I can get by with that. If the stomach twinges start or the flushing I immediately take two dye free benadryl. I also have spent a majority of time in the holistic world, frustrating thing though is I spent way too much time trying to "detox"  desensitize, etc and although thats just peachy for a sick person it just triggered my mast cells but good ole me would keep trying. I've done so many holistic approaches to my symptoms, the best so far for me is antihistimines! Along with the vit/supplements I can tolerate, there aren't a ton. I still treat my family holistically and know my stuff in that arena. Along with your MCS I'm sure you've been diagnosed with fibromyalgia? I was and cannot tolerate massages etc. However my doc does cranial sacral manipulation. I tolerated that well. On the fibro front, I cannot tell you the unbelievable difference in food elimination, when I re test say dairy it comes back bigtime chronic unrelenting deep bone pain, shooting pains etc. I've truly gotten my fibro and migraines under decent control with diet/natural progesterone. I still get them but nothing like before so I cannot complain.  The antihistimines are my best defender with the MCS. I do not get soooooo sick now.  Don't get me wrong, like you I'm more homebound now. I medicate before grocery shopping, shop later at night when there are less people, cannot fly, go to movies, the forest where people will spray off, I react to the sunscreen people lather obsessively all over their bodies just while running around town, my body is like a foreign chemical detector. If I could just make a career out of it and survive the exposure!  As you will notice mastocytosis and mast cell disorders MCAD, Idopathic Anapphylaxis, do not have a "set description" we are all quite varied in symptomology and triggers.  
I'm going to jump the gun here on a prediction but I'm guessing you've gone into anaphylaxis and had no idea because you could breathe. You are used to reacting to everything on a daily basis like me and many others on here.You take the good days when you can get them, but continuously reacting is nothing new to you so you see them as normal. We all have varying stages of degranulation and various types of reactions depending on what our body decides to do that day.  But our "normal" would freak out the general public.  Being sick for so long you've become very aware of your body and your reactions, my guess is now as you find antihistimines you tolerate you will gain a little more control. I know it's not in the alternative realm, however it's made a huge difference. Allegra gave me my first formed poo in 6 + years.. Gross but I'm making a serious point! Now when the brand was changed I got quite sick, and realized it was the inert ingredients in that brand.
The physician you work for could probably write you an Rx for cromolyn sodium. It is expensive, Ruth in AZ on here has it made at her compounding pharmacy for much less and very few ingredients. It is a very natural approach (mast cell stabilizer)to this disease and works for a lot of people, again supplemented with other h1 and h2 blockers. It's been too expensive for me currently but is on a wish list to test eventually.  At this point I would not say I'm hypersensitive to touch ( light touch, with exception to my head) so mike can be the expert there, again grab me by the arm and forget it I feel it for an hour. Also tons better since I've eliminated foods. I wish there was a pill I could take that would allow me to go out and eat, or to the movie theater, or just go shopping or travel, traveling has gotten pretty limited now. What I do still do I  heavily medicate before and during and and for the rest of the day
and still can have to leave the premises before I wished.  However I'm able to not get it to that horrible point most of the time. Antihistimine treatment has allowed me to manage and not get to that horribly critical level all the time. Again, sometimes it still happens, but I keep on medicating.  Swelling! OH yes! Sometimes I swell before the big monty thats coming as a predictor of trouble so I will just up the antihistimines that day knowing my body is not in a good mood today! I am a human pufferfish, I can gain 6-8lbs overnight. A pair of pants will be so baggy that I need to get a size smaller and a day later so tight I can barely zip them.
The list of your symptoms describes a lot of us, none of those symptoms are "off" for a mast cell disorder. In fact MCS ( Multiple Chemical Sensitivity is a reaction, a reaction includes mast cell degranulation. I also will experience the esophagus itching, tightness or swelling, chest pain, chest tightness, tachy,with chemical triggers. I do think I'm turning a page and possibly starting to get the breathing issues. The last biggie (to a relative that showed up wearing perfume and I should have kicked out of the house immediately) I ended up throwing up and that one was a doozy that should have gone to the hospital. However, that's my biggest fear, they won't treat me properly because they do not understand.  Quercertin is a natural mast cell stabilizer I'm on the fence right now. I'd love to take neuroprotek, but fear I will react to it due to the chamomile. Allergy Research Group has one that I'm trying and it's the most allergy friendly and something I had read from doc Theo was positive about that brand. He tested a lot of brands and found many to be not as pure as advertised. What kind of water purification are you using? I'm guessing you react to all sorts of water too! It was crazy going through filters that did not filter water good enough for me. Right now I use aquasana, we can only use it for about 1/2 the lifetime before I start to have trouble. We use a lot of water though, I cook a lot for the fam as well as myself. Ok I'm rambling and disorganized in thought as ususal Smiley
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Re: New Territory
Reply #8 - 04/26/11 at 17:35:13
 
After all that Susan I didn't totally address your knowing if it is anaphylaxis, that one is hard when you react all the time, I think MCS does make us unreasonably tired because we are reacting to everything, I'd describe the anaphylaxis episodes even with gastro symptoms/flushing as the onset of symptoms coming on quickly. Now It can start out slowly earlier in the day and suddenly progress very rapidly. I'll give you an example. Took a visitor to the mall, they went into a store that was poofing cologne out of their vents, I knew better before I walked in and for some unknown cognitive reason I ignored my knowledge and had a mental tissy fit and wanted to be with our guest and went inside. I tried being a tough marine, and got dizzier and dizzier, my chest began to itch. I popped benadryl,,, then could feel eminent doom and told her I had to run out. I went out and sat for about a half hour, debating the ambulance and breathing, telling meyself no, she came out and could tell I did not look well. Home was an hour away so we started our way home. I was trying to breathe and behave relaxed, the nausea was overwhelming. Somehow we made it home very quickly. Then it progressed, I was throwing up, shivering, diahrreah, I should have went to the ER. That was stupid stupid stupid. I seriously slept for two days, and stayed on heavy antihistimines.  Shear exhaustion, and that also happens when exposed to too many things in a day as you've described. I used to avoid "drugs" and try to do everything natural. This disease needs modern medicine. I believe the overall continual high histimine producing, degranulating state I've kept my body in pre antihistimines did more damage than any side effect from antihistimines.
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Re: New Territory
Reply #9 - 04/26/11 at 20:15:21
 
Mike, I read your thread about trying the new mast cell stabilzer. So sorry it didn't work out! I am well familiar with seeing each person responding differently, you just can't predict.

Reading everyone's stories is giving me a a whole new perspective on things. I have had the peripheral neuropathy type pain, especially in my feet, for many years. I knew it wasn't diabetic, but we had been thinking it was from my heart condition. Hearing you describe your pain, it sounds very much like mine. It often keeps me awake at night. Do you get swelling with your pain? My feet swell, and my hands, and sometimes other areas as well, but not always.

Lately I have found I sleep better if I keep a heating pad under my legs, set on low. I see a lot of people react to heat, but most of the time I tolerate it, even crave it. Only in summer, when everything is hot, even the air you breathe, do I have trouble with heat. I find hot showers also help with the pain, even though it also causes flushing, and exhausts me, but at least the pain is improved.

I take morphine on a daily basis, had to start about 5 years ago when I was having intractable migraines. Those were probably triggered by the house I was living in having mold in the crawl space.

Sounds like I have been lucky I can tolerate the morphine. I, too, cannot take any NSAIDS. I worried when I started opiods, but at the time, the pain was so bad it was morphine or suicide. It does not always control the pain in my feet, and sometimes legs, but occasionally I take extra to just get a day of peace.

I also lucked into a protocol called frequency specific microcurrent. It is a little like TENS, but the frequency is used differently. In TENS, they try to overwhelm the nerves, to block pain. With FSM, the attempt is to use physiological amounts of current, and very specific frequencies that match those in healthy cells.  I stumbled on it when the office where I work got a unit, and one of the docs wanted to try it one me.

I had been having chronic migraines for a few years by then, about 5 days out of every week. Triptans rarely worked, but the morphine had the pain dulled. When I used the microcurrent the first time, I didn't have a migraine for a week. As we learned more about using the current, I was able to get my migraines under control. I now only have migraines once every six weeks or so, and even then, can usually use the machine rather than drugs.

I find it works on the neuropathy and other pain, too, to a lesser degree. I am hoping that if I target the frequencies differently now, I might get better relief. The machines have been proven to lower inflammatory chemistry. I'm hoping if I focus on histamine more, I might get some improvement.

I'm so sorry you have such constant pain. It takes a lot of energy to have chronic pain. Makes it hard to not be crabby, and just plain wears you out!

Do you have fatigue, too? My brain fog is not as bad as some, but my fatigue is very bad. I often have days where I feel like I have the flu, with everything aching, and TIRED.  The antihistamines have helped wit the shortness of breath, which gives me a little more stamina. I am still getting what is called post exertional malaise  in the chronic fatigue community.

Sorry I am not being very organized here. I feel like  a hose with the water pressure up so high, it is just spurting out! I like to understand things, so I have some illusion of control. It seems with these illnesses, it is essential to learn if you want to survive. I really appreciate you sharing your experience. Like I said, it is making me reassess what my symptoms are, and what they might be caused by.

Mike, I would love to learn more about the ckit, and how that affects the type of mast cell problems you have. Is your disease considered cutaneous, or systemic? I thought the cutaneous type had rashes, but it sounds like yours manifests differently. Do you have any studies or papers that describe what happens for you, or is it fairly unique. It seems this field of medicine is pretty new.

Don't let me exhaust you, but anything you want to share is appreciated.

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Susan

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Re: New Territory
Reply #10 - 04/26/11 at 20:48:34
 
Hi Sandi,

Wow, you do have bad sensitivity. I wonder, sometimes, as you say, if I am just so used to how bad things are, that I never think to go to the ER. I hear other people describe a new symptom they have experienced, and how terrible it was, and how afraid they were, and think how I have that same symptom all of the time. I'm just used to it.

BUT, I don't vomit, or pass out, or stop breathing. So I tend to think the symptoms are not very extreme, which is what would send me to the ER. I think you may be right that sometimes I have anaphylaxis, but not sure. When I first got sick, I had orthostatic hypotension. My blood pressure was always low, but if I stood up from sitting, or sat up from lying down, I would pass out. My blood pressure dropped too much. But that have improved a lot with treatment for Lyme disease, and I no longer have low blood pressure much. I understand that is the main fear with anaphylaxis, that the blood pressure loss can cause cardiac problems.

But I definitely have many of the other symptoms. I think, though, as Mike says, I  must be more of a leaker. When I have chemical exposures, I will feel terrible, but I won't think about going to the ER. I can't imagine what they could do for me! No, when I get a bad exposure, I want to go home and curl up and put my head under a pillow.

I will have to try taking extra meds with exposure, and see what it does. Yes, I have the fibromyalgia diagnosis (FMS), along with chronic fatigue syndrome (CFS), chronic Lyme disease (TBD), migraines, autoimmune thyroiditis, chronic myofascial pain syndrome (CMPS), Irritable Bowel Syndrome (IBS), and others. The alphabet soup.

Treatment with antibiotics helped me a lot, though I am now allergic to macrolides. I have been taking low dose minocycline for a long time because it keeps certain inflammatory cycles under control, and keeps my knees from swelling. My doctor isn't sure if I am still infected, or if the antibiotics are doing something else to lower inflammation.

This is all a big change for me. For many years I was into all "natural." But when I came down with this, the natural treatments couldn't touch it. I took high dose antibiotics for six years. They saved my life, and my vision, but they haven't been able to cure me. I did learn that sometimes the drugs are necessary.

I know my doctor would prescribe the cromolyn, but I wonder if it would interfere with testing. I would hate to screw up the tests, which I understand are tricky, anyway. I have lived wit this for so long, I would rather get the diagnosis first, them experiment with adding new drugs.

The only things I have found really help me with the chemical sensitivities are injections of magnesium and hydroxy B12. I know it doesn't help everyone, but it does help me. I just get tired of poking holes in my skin every day, so I let off for a while, get worse, then start again.

Its a full time job, doing all the things that can help get me better. http://mastcelldisorders.wallack.us/yabb/Smilies/grin.gif

I haven't addressed everything you said, but your story, too, is really helping put things into a new perspective. So much to learn!
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Susan

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Re: New Territory
Reply #11 - 05/20/11 at 09:20:11
 
I got my test results today, though I haven't heard from the doctor yet.

Tryptase is normal at 5.81 (range 1.0-11.5)

I had a bunch of RAST panels, with only a few things showing positive, and only one (Rye) getting out of level I reactions:

D. pteronyssinus 0.08
D. farinae 0.11
Cat Hair/Dander 0.33
Dog epithelia 0.12

Bermuda grass 0.06
Rye perennial 1.91
Brome smooth 0.18

Alternaria tenuis 0.88

Total IgE 92 (range 0-100)

None of the foods showed reactions, and most of the molds, which I KNOW I react to, showed negative.

My 24 hour 5HIAA urine was 2.9 (range 0-14.9)
5HIAA urine was 3.9 (range undefined)

24 histamine urine was 22 (range 0-65)
histamine urine 29 (range not established)

Does a low tryptase completely rule out systemic mastocytosis?

The allergy panels are certainly not showing anything like the kind of reactions that I have, though my reactions are often delayed. In the past I was tested for IgG mold panels, and was reacting off the charts to those, while having very similar IgE results, only showing minor IgE reactions.

I saw the GI doctor today, and he wants to start with a manometry, a 24 hour acid level, and a endoscope to take biopsies. He wants to clarify whether the chest pain I have is due to histamine reactions only, or whether the acid levels are high, and they need to be treated.

The issue is that I already have osteopenia (tested in 2006), and may have progressed to osteoporosis, so he doesn't want to put me on PPIs unless that is what I need.

He is also looking to see if I am actually having contractions of the esophagus, and at what level. Says that I may be able to try  nitroglycerine and/or inhalers to help with that, depending on what the cause might be.

He intends to take biopsies to look for Mastocytosis, H. pylori, Eosinophilic Esophagitis, and anything else we can test for. The Eosinophilic Esophagitis is something new, an allergy to something in the environment that doctors have not been able to find, but they CAN tell it is impacting people.

So what does this leave me with? Not systemic mastocytosis, but maybe MCAD? I don't see how it would be IA, as I don't have anaphylaxis. Or maybe I don't understand enough.

The problem is that the mast cell specialist I could realistically see only takes people who have already been diagnosed. I don't know if the allergist I am seeing knows enough to diagnose me accurately, or not. My GI doctor is open, and willing to biopsy, but from what I understand, biopsies of the gut are not considered diagnostic?

On the other hand, I am responding too well to antihistamines to have it not be something histamine related, at least in part.
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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Re: New Territory
Reply #12 - 05/20/11 at 10:03:34
 
Hi Susan,

Your numbers are very similar to mine!  The only difference is that I tested "equivocal" for shrimp instead of rye.

It's unlikely that you have systemic mastocytosis, but that doesn't rule out a mast cell disorder.  The last three articles I've seen about mast cell disorders have all acknowledged that some people have exactly the same symptoms, but their baseline mediators are not elevated... nobody is sure why.  One thing they're testing for is a new mediator, carboxypeptidase.  You could also try measuring mediators such as histamine, tryptase, prostaglandins, etc... when you're having a flare.  The other big clue is if you're responding to the basic treatments for mast cell disorders (antihistamines, mast cell stabilizers, etc...)... and I believe you are, correct?

It sounds like you might want to do the endoscopy to figure out the cause of your chest pain, especially if your doctor is willing to check for elevated mast cells and elevated eosinophils.  Great ideas.  You're right that some doctors will not want to see you unless you have SM, but the real specialists will see you if you think you have MCAD and you've been thoroughly worked up for alternative diagnoses (carcinoid, lupus, pheochromocytoma, vasculitis... things like that).  It sounds like your GI doctor is being useful right now... so that's a good thing!  My advice would be to follow through.  It's just as important to rule things out as it is to rule things in.  I've had such extensive testing... even though I don't have SM, there's no way anyone could argue that something else is causing my symptoms (besides MCAD).  I've been gone over with a fine-tooth comb Wink

Heather
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Re: New Territory
Reply #13 - 05/20/11 at 12:14:50
 
Hi Susan,

Your reactions to mold can mean that mold is a "trigger" for you, but not an "allergen."  It can trigger your mast cells to degranulate, but it's not an allergic reaction.  The symptoms are the same, and reactions to both are controlled with antihistamines.
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Re: New Territory
Reply #14 - 05/20/11 at 13:47:27
 
OK, Heather, so now I know I am in good company! Smiley

I'm really grateful you are all willing to keep going over this! I keep thinking I have got it, but my mind keeps dropping pieces out like a sieve.

I agree, it is important to go through the differential diagnosis. I don't want to insist this issue with my chest pain is all histamine, and find out I have burned out my esophagus and then get esophageal cancer. Alternatively, I don't want to take PPIs if I don't need them, and end up with bones like Swiss cheese.

My GI doc is a really nice guy. Willing to think out of the box, and if he doesn't know about something, open to learning more.

Joan, I forgot about how the triggers are different. I KNOW I react to mold, absolutely no doubt, and I have other types of labs showing how it impacts my immune system. I just have to get this idea about how it can trigger histamine and other inflammatory markers I am not used to thinking about.

I am absolutely responding to antihistamines, both H1 and H2. Since starting them, the chest pain is almost gone (sometimes creeps back in, and if I take more of Zantac, sometimes Zantac and Zyrtec, it goes away again); the tachycardia is gone (resting HR gone from 110-120 down to 70); shortness of breath, gone; itching much improved (an area of eczema on arm that has been there for two years is healing); swelling in hands and feet, better; difficulty swallowing, gone; tinnitus improved; blood pressure down.

So yeah, better! Sometimes I think I should be taking even more antihistamines, but I am trying to work through the diagnosis, don't want to take too much of something if it isn't right, or miss what I DO need to do. I wonder if taking more would help the GI swelling, but I can be patient now, when I know how much is already improving.

This is very exciting! Grin I have been sick for almost 19 years, but the last two were going downhill fast. I was starting to think that level of health was what I was going to have to live with, but now it looks like there is more that can improve.  
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Susan

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