Digestive Enzymes and Mammalian Meat Allergy

I'm Ready to Curse in Kangaroo

The research crew in the allergy department at the University of Virginia were so kind to test my digestive enzymes I have prescribed for chronic pancreatitis. They were looking for "a carbohydrate present on meat called galactose-alpha-1,3-galactose, also known as alpha-gal" and they found it. All of the prescription grade FDA approved digestive enzymes are made from pork protein and apparently the manufacturers do not process the alpha-gal out of the protein when creating the enzymes. I sent the researchers the prescription brand I had LESS hives from compared to the other brands. I suspect there would be even higher levels in some of the other brands.

I have tried a couple of different brands of vegetarian digestive enzymes since finding out I had a mammalian meat allergy last fall. Unfortunately for me, the ones I have tried seem to be using some type of herb or plant that is causing hives also. Many herbal remedies contain high salicylate plant products which for a "hiver" like me spell trouble. I guess I will need to keep trying other brands - but since they all have similar reactions I fear they share a common source for the enzyme. Big sigh!

Per the University researchers there is a prescription vegetarian enzyme alternative currently in testing for FDA approval. Knowing how long that can take I guess I shouldn't worry about ever needing a prescription for those pills!

I'm sad about the results on the enzymes because using them did help my pancreatic pain. It also helped me absorb fats and the vitamins that are stored in fats, otherwise I don't digest protein or fat very well. I pray that no one else with this allergy has pancreas issues because this is not good news.

Maybe I can contact the company trialing the vegetarian enzymes for the FDA and see if there is some type of hardship exemption.

The over the counter supplements don't tell me what they are made of nor is there any regulation that insures that the dosage on the label is actually in the pills. I tried ones first that friends said were reliable. I guess I will just need to branch out.

My Mom and I will get up at the crack of dawn to get her ready for her operation day. I am worried about the results as I know she is, but am afraid we will have continued bad results if she does not have her gallbladder removed. Praying for gallbladder goodness tomorrow. She has a very experienced surgeon who took my gallbladder out a few years ago. Hoping for the best possible outcome.

Neurontin for Nerve Pain

New Try for Old Med

Saw my PCP today and agreed to try taking neurontin again for The Legs.  This will be my third try with neurontin, the first two were flops.  Instead of titrating up, he wants me to start at 300 mg or 600 mg at bedtime.  The second time I tried neurontin it made me excessively sleepy, but not so tonight.  I had a few moments of sleepiness, but other than feeling tired (which I should - I've had about three hours sleep in as many days) I am not too sleepy.

I could not take Lyrica (for me a Dr. Jekyll and Mr. Hyde type of drug) but neurontin (gabapentin) is the precursor for Lyrica and can be used for nerve pain.  I took 300 mg at 7:30 and waited until 9:00 to take the second 300 mg.  I am very very very nauseous.  I will take some phenergan soon if I can keep it down.

Neurontin so far has taken away most of the burning pain in The Legs and almost all of the pain from touch.  The pelvic pain is still bad, but about an hour after the second dose I quit having the leg jitters from pain.  I was actually able to get up and push a swiffer mop around the kitchen without a lot of pain, which is the best it has been in months and months.

I am noticing my left eye is turning in - which it does when The Headache is bad.  The first 300 mg did rile up The Headache but I turned up the amps on my occipital stimulator and have been able to buzz it down a notch or two.   The Headache is not really happy, and I want to always keep The Headache happy and asleep!

I did not expect neurontin to effect my digestion, but it seems to have increased my intestinal motility - which is not a good thing for me, as I process food too quickly anyway.  The first 300 mg took a tiny bit of edge off the pain but I still was having severe pain in my legs and pelvic region.  The second 300 mg really worked better for the pain, but that is when the nausea started. Now three and a half hours from the first dose and two hours from the second dose my eyes are acting really funky like they can't stay looking at something very long.  I keep having to blink and redirect the eyes.  Hoping this is just temporary and will wear off.  The pelvic pain is still there, a little less than it was which is a blessing.  I don't feel very coordinated and feel a little short of breath.  Hoping this is temporary also.  I really need a pain solution that does not include narcotics.  The Headache and The Belly absolutely refuse to cooperate with narcotics.

I saw my immunologist Dr. Calm today.  I am off the cyclosporin.  Yeah!! He told me that my hives may not be connected to the mammalian meat allergy.  Bummer.  I asked him if anaphylaxis from the mammalian meat allergy could cause pancreatitis.  The first acute pancreatitis attack I had was about six hours after I ate two or three Slim Jims for lunch because I was running errands on my lunch hour.

I have a definite appointment with Dr. Kildare on Wednesday Jan 5th at 1:00.   My PCP said Dr. Kildare did call and talk with him about pain treatment options, which is the "why" for the neurontin.  At this point, I don't care what I take, as long as it works.

I feel right now like my lips are swelling and my nose is swelling and having a bit of trouble with wheezing.  Good heavens, I surely can't be allergic to neurontin.  My eyelids are itching, and my ears feel hot.  Better sign off, and take some antihistamines.  Maybe I ate something or took something OTHER than the neurontin to do this?? I did have some real butter with my low fat meal this evening. Arrrrrgh. And now The Headache is starting to spike forward through my brain from the back and come out above my left ear.

Can you run away from your body???  Wish I could!!!  Gonna antihistamine up and hope it helps!!

Winny Dough Girl

Triumph Over Adversity!

Today I am dealing with the aftermath of my mammalian meat catastrophe of yesterday evening.  My brother told me this morning, yes - that WAS pork.  He didn't even think to tell me and I didn't even think to ask.   Only a teaspoonful or so of meat and about a half cup of rice and vegetables that had touched it and I had hours and hours of pain and misery.  Thanks heavens I had already been loaded up on antihistimines so it didn't get out of control!

This is what happens to me once my body decides it is going to react to something.  Each time the reaction is to smaller and smaller amounts and the reaction is more extreme.  I am hivey all over tonight with small hives, and my digestive system is still having episodes of angioedema and spikes of extreme pain.  My face and body are puffy and my nose and the insides of my ears are slightly swollen and my eyes are all scratchy.  I wish that I could just put myself through a wringer washer and squish everything out!  I feel all puffy like the Pillsbury Dough Boy, but I don't want anyone to poke me in The Belly.  It's mad enough at me right now without aggravating it further!

My blood tests came back with good news - no infection no elevated amylase or lipase, so no matter how awful The Belly is treating me it is not really out of kelter.  The nausea/vomitting are still ongoing, this is now at least five days into this.  All I ate today were some caffeinated beverages to keep going and a cup of boiled rice with some non-fat milk on it.  I will just have to be extra cautious since I gave it some delicious pork to digest and it didn't want to cooperate.

I sent some of my digestive enzymes I take for chronic pancreatitis off to the University of Virginia for analysis to make sure it is OK for me to keep taking them.   I contacted them to see if any people with the alpha-gal allergy had problems with digestive enzymes.  They are made from "porcine proteins" or in other words PORK.  The brand I was using (Panges) did not break me out in hives like another brand (Creon) did, so it may just be something in the manufacturing process and not the pork that is causing me issues, but I would rather check it out.  I ordered some vegetarian enzymes from a company another chronic pancreatitis sufferer recommended.  However, they are very expensive when you have to purchase OTC and they are not regulated by the FDA for quality or content.  There are no manufacturers of vegetarian digestive enzymes currently approved by the FDA for prescription strength therapy.  Life just gets more and more complicated.

I have an appointment on Monday to see the nurse practioner for Young Dr. Kildare the neurologist.  I guess I won't get to see kindly Dr. Welby again.  Now another level of doctoring to jump through and another neurologist I will have to endure.  Dr. Welby was such a keeper!  Maybe Dr. Kildare will be a keeper too, and the nurse practitioner.  I generally get along pretty well with NP's, just have no experience with the one at this neuro practice.  I don't hold much hope for help, as I just keep getting passed on from doctor to doctor to doctor.  This is now going onto my sixth year of having these continuing issues post radiation therapy.

I don't know if there is anything they can do for The Legs but I am willing to try almost anything.  I balk at the monitored biofeedback for "voiding" control and pelvic pain issues simply because it sounds very painful.  I am also not wanting to do physical therapy for pelvic pain, simply because when it gets going it is like this month - weeks to get it calmed down.  Before this year I could keep on motoring, buckle down and keep going, but I either just don't have the will power left or the pain tolerance I once did or the pain has just increased beyond my limits.  Maybe its all three - well, probably its all three - let's make that most certainly its all three.

The Headache is not good today but I am so pleased I was able to keep it in the bounds of non-emergency room worthy pain mostly utilizing the occipital stimulator, heat pads, and ice packs.  WooHoo!!!   This is the silver lining for my cloudy week.

I am pain medication free but I may take a Soma pill this evening without the narcotics.  I am like the walking dead in my zombified state today.  Must....get....sleep.....soon!!!  I am still plenty jiggly twitchy from yesterday so sleep will not come easily tonight.  Sigh.  But if tomorrow is as good as today and I behaving myself over the weekend I can see myself returning to work next week.  Yeah!!!

Bad Headache No. 6 2010

Did I Eat Mammalian Meat??

Pain everywhere this evening.  I almost cannot sort it out.  The Headache has decided to crank up the amps tonight.  Debating - should I go to the ER?  Still hoping that I can stop this runaway train before it goes off the tracks.

My facial pain is going full blast, The Headache has taken over control of my brain, and I can't think.  I'm doing the stomp of pain with my right foot trying to ride the wave until it quits.  I have changed stimulator settings three times this evening, and think that I have delayed the worst of the pain, just not sure it is stopping The Headache well enough to avoid having to be knocked out.

The Belly is cramping painfully and I am wondering if I am having another allergic reaction like I did in late October.  I ate some stir fry this evening.  I thought the protein was chicken.  Thinking now it must have been pork.  I just ate two little tiny pieces but of course the entire stir fry had touched the protein.  I didn't think to ask my brother, who cooked it up, what the protein was.  Cautious in a restaurant, careless at home.

The stomach spasms are nauseating in addition to painful.  I have upchucked my half cup of rice, vegetables and probably pork.  I can tell I am now past the point where I can hold down liquids, pills or food.  It would be a waste to take my rescue medication because it would come right back up.  I have taken 100 mg of benedryl today, 50 mg of atarax, and 100 mg of phenergan, yet the pain persists and I can't keep anything down.

The Legs and the pelvic pain are not any better.  At least I know the pain medication I was taking is not causing the nausea nor the stomach pain.

When I have pancreatitis attacks sometimes I smell a certain smell.  It's sorta metallic sorta sickening, and I'm smelling it tonight.   I smelled it all during my first pancreatitis attack, and I thought at first it was the hospital - now I know its just me and my electrolytes.  Maybe the belly pain is just because I tried to eat something, not an allergic reaction?  Not sure since I have so many antihistimines in my body right now, just took 50 mg of benedryl and 25 mg of phenergan about 2 hours ago so I can't tell if I'm trying to go anaphylactic.  The belly pain did start approximate 4 hours after eating which is very similar to the problem I had in October.

Going to put my heating pad back on, and then try ice packs.  Everyone here at home is asleep.  If I have to go to the ER I will have to wake someone up.  I hate to have to do that.  This won't be the first time or the last time I sit up nursing The Headache.  I certainly hope it appreciates me taking care of it!!!

Very disappointed today as I decided I would not be able to attend my niece's wedding in Kansas.  I did make sure her gift should be delivered hopefully by Friday since my Mom and I could not make it.  Thank heaven for overnight shipping!

No More Mammalian Meat

Just What I Need - Another Problem

Got a call from Dr. Calm's office (my immunologist) today and I definitely have an "alpha-gal" mammalian meat allergy.  The hamburger I ate a few weeks ago was the cause of my anaphylactic reaction.  The jury apparently is still out on the c-kit mutation test for mastocytosis.  No more mammalian meats or mammalian meat byproducts or fats allowed! 

When I had the EMG done for the radiation induced lumbosacral plexopathy (try and say that three times in a row really fast - not hardly possible) Dr. Welby commented on my occipital nerve stimulator, saying I was a really special person to have one of those, meaning he didn't see THAT too often.  I told him my theory that I am the "nexus" of weird diseases, and I really want the merry go round to stop and let me off!  Well, now I have one more weird disease!

Guess my tick bites here in southwest Missouri (not far from Arkansas) have set me up to be fatally allergic to beef, pork and other mammalian meats!  Trying to have a sense of humor about it, I started getting a list together of new things I cannot eat:

Platypus
Whale
Dolphin (well, tuna was already off the list so no accidental dolphin eating here)
Venison
Rabbit
Squirrel
Possum
Elephant
Mice
Antelope
Bison
Elk
Seal
Manatee
Sea otter
Polar Bear
Dog
Cat
Tiger
Musk Ox

Apparently I could be a cannibal, because human meat does not contain "alpha-gal" nor do the higher apes like chimpanzees and gorillas.  Ummm, baked gorilla - no thanks.  I think this about makes eating out in a restaurant impossible as I am about out of foods that cannot be cross contaminated in a kitchen.

Proteins I can still eat (deadly allergic to seafood and fish so they are off the list):

Snake
chicken
Alligator
Chicken
Turtle
Chicken..
Turkey
Chicken....
Grouse
Chicken......
Parrot
Chicken........
Lizards
Chicken...........
Quail
CHICKEN...........

I think I'm getting carried away with chicken, which is the protein I eat the most of anyway.

You know, when something is restricted from your food list you start yearning for it even when it is something (like beef and pork) that you don't really eat that often.  I also started thinking of things I eat or take that have mammal protein in them - gelatin capsules for pills, pancreatic enzymes for digestion, refried beans, tortillas, jello, lunch meat - ouch!!  Too much for The Headache to handle!

My mom was doing better by this afternoon with her dizziness.  Hoping this means the antivert is working, and it is only an inner ear problem.  She is perking up a bit, more like her regular self.  This at least seems to be going well!  Yeah!

This week has not been good for me healthwise. Monday evening I was trying to sleep and in a lot of pelvic and back and leg pain.  I drifted off and was dreaming I was screaming in pain.  I woke up and I was actually laying there screaming "EEEEEEEEEEEEE" so I guess it wasn't a dream.  I did medicate and have stayed home the last two days partly because my Mom needed help, but also because I am in an incredible amount of pain.  In addition to the pain I am extremely nauseated and I have hives in batches several places on my body.  I went without pain medication most of today and the nausea was still there so the "medication is to blame" theory bit the dust.  I fear The Belly may be riled up in addition to everything else.  This is messing with my need to do things and be at work and concentrate and I am not happy about it one bit. Pain pain go away, come again another day!!!

I think Karma is working against me for some reason, or maybe it is because the evil thought crossed my mind that I might have wanted to eat a duck billed platypus for dinner or chow down on a poor manatee.  The ghosts of all those future chickens I will be eating are going to haunt me now!

EMG Tomorrow

Dr. Welby At The Helm

I have an Electromyogram (EMG) of my legs scheduled at 10 AM tomorrow and Dr. Dense is NOT the neurologist.  Instead I am getting Marcus Welby, MD,  the kindly reassuring older neurologist everyone in town respects and loves, the one that never takes new patients because his roster is always full.  I wasn't expecting anything until next January or February at the pace they do things at the local neuro clinic.  My PCP must've motivated somebody - I'm totally surprised.  WooHoo!!

I didn't take any pain meds today, and won't tonight or tomorrow.  I am afraid of skewing the EMG results with medication, so I decided to hurt instead.  This certainly has been a week of doctor appointments.

I saw Dr. Calm, the immunologist, today.  He is running tests for mammalian meat allergy and the genetic mutations (c-kit mutations?) for mastocytosis.  Apparently if I have mammalian meat allergy I won't be able to eat beef or pork because of some kind of enzyme in the protein.  Well, I would rather have that than mastocytosis but I really don't want to have either, so hoping the tests come back negative!!!  No changes in the cyclosporine dosage.  I am not supposed to eat any beef or pork until I hear back from the tests.  We were going to have ham for Thanksgiving, so I think I am going to risk it and take more benedryl that day to counteract the possible mammalian meat enzyme allergy. 

Had to arrive late at work due to Dr. Calm's appointment, then leave early in the afternoon because they messed up my blood samples for the tests and I had to go and get poked again.  Apparently they took "serum" samples and they needed whole blood. Wonder what the difference is, because it comes out of my veins the same.

Very on edge this evening, suspect it is because The Legs are misbehaving. The pain will get better or it won't.  I just am having trouble sitting still - have dancing legs!  Very hard to concentrate, and little things are getting on my nerves.  I will practice my breathing this evening and my biofeedback and try to concentrate on something else!