Do You Have Food/drug Sensitivities??

[anaphylaxing]

IF SO, have you been worked up for mast cell disease?

If not, just wanted to put it out there that you should as there is so much overlap and association between them, I would hate for someone to be grumbling along unrecognized.

If you're curious, you can checkout the mast cell disease forum that has some more info

http://mastcelldisorders.wallack.us/yabb/YaBB.pl

or the mastocytosis society website

http://www.tmsforacure.org/welcome.php

my random late night thought!

[hilbiligrl]

Glad you posted. I have been visiting the sites lately. I have not been worked up for mcad yet, but i respond to meds, etc..... to the point that my doctor has already diagnosed me with it. Yes, i too and trying to figure out which one is the primary disease and which ones are secondary for me....... as the dys and mcad and cfs seem all to be as severe as the other..... hmmm....... and most all of this stuff overlaps. Leaves one really scratching their head.

I know hardly no one on here responds to cannibas questions/posts.... but i found 2 research articles from immunologists and cell biologists about cannibas effects on mast cells in which they say the cannibas/thc suppresses the mast cells..... which could suppress an attack. Very interesting stuff. Gonna take it to my doc and see what he says.

Thanks for posting.....

[Katybug]

hilbiligrl,

You made me laugh ...you are not alone. I wonder if it is any worse than a lot of the drugs many of us are already on.

anaphalaxing,

I have several food and drug sensitivities and was thinking mast cell issues. It has come to light that my issues are actually coming upstream from the mast cells in my immune system and are causing the mast cell issues amongst other things. So it could be that mast cell issues might even indicate that further investigation should be done also.

[HopeSprings]

Yes to drug sensitivities, not sure about food. Would love to be evaluated and have TRIED in vain to get a Doctor to seriously look at this. I can't find anyone around here who knows anything and everytime I try to get any testing done, I have problems getting the RIGHT testing done. I give up.

Katybug- how do you know this about your immune system, mast cells etc? Can you talk about this a little more?

[anaphylaxing]

So sorry to hear about your situation Naomi. Where are you located Naomi? Maybe we can help?

You should get a serum tryptase and urine N-methylhistamine and prostaglandin D2, blood IgE levels and CBC as a start. Maybe allergy testing too, though you've probably had that.

Can you find an open minded family doc who would work with one of the mast cell docs? That's what lots do.

Have you tried antihistamines to see if they help?

[HopeSprings]

Thanks, Ana. I did get my PCP to play along a little. Serum tryptase was normal. I wanted a 4 hour urine methylhistamine, but the lab said they only do a spot test. Did that and it was normal. A few years ago Dr. Julian Stewart thought I might have MCAD and ordered a 24 hour methylhistamine, but the lab only did histamine, not methylhistamine - so we had to to settle for that. It was normal. Don't think I did prostaglandin D2 and IgE - what are those tests? I'm in NJ ... I think Julie said a while back the closest MCAD Dr. near me was in Massachusettes - can't get there at this time. I do have the drug and chemical sensitivities (and alcohol), but I don't FLUSH except in emotional situations or I used to flush when I drank red wine. Not sure MCAD fits me? Isn't flushing a major symptom? I'm scared to do a trial of antihistamines because I react so badly to everything.

[Katybug]

Naomi-

My C4a levels were tested in 2008 by a Lyme specialist and were off the charts high (59,010 - normal range is 0-2810). The immunologist I just started seeing just retested this and it is still 13,233.

C4a is a protein that is part of the immune system known as the complement system. C4a, along with C3a and C5a, are anaphylatoxins. They cause a whole slew of reactions in your body, most notably inflammation, vascular permiability, smooth muscle contraction, and mast cell degranulation and anaphylactic reactions. They are associated with many autoimmune and/or chronic inflammatory diseases, including Lyme Disease.

So what appears to be MCAD symptoms in me is probably the result of the elevated C4a degranulating more mast cells than what is normal. Our working theory as of two weeks ago is that the elevated C4a is due to chronic Lyme Disease. So, if we reduce the C4a, hopefully the rest will follow. In my case, that may mean going back to long-term antibiotic tx. I have this conversation coming up on Tuesday.

Let me know if you have more questions.

Katie

[HopeSprings]

Katie- So is it likely chronic lyme is causing the ANS malfunction? I don't understand why antibiotics don't kill the darn thing. I think we talked about the compliments before - I forget now. I had a high C3D, but the Dr. who ordered it never told me what it meant - he probably didn't know, lol! Do you know anything about this particular test? I'm going to see an immunologist next month - can you tell me what test to ask for that would look at all this stuff?

[anaphylaxing]

Naomi you could definitely still have mast cell issues without flushing

Have you checked out the mast cell disease forum? Even if you test negative to everything you could still have it if you respond positively to the meds. It's an evolving area research wise so not a great deal is known yet, so they're treating people based on symptoms in many cases. Would your family doc work with the Boston doc?

IgE would be a marker of regular allergies

Prostaglandin D2 of mast cell disease

but you can be negative to all and still have it (like me) which is the realm of MCAS/D vs idiopathic anaphylaxis

Katie raises a good point, a good allergist will want you to be tested for things that can masquerade like mast cell disease including complement deficiencies. Mine were normal.

The docs are definitely willing to work remotely with your family doc

[Katybug]

Hi Naomi,

Yes, we think it is chronic Lyme. Many theories on why Lyme is sooo hard to deal with...various strains, drug resistance, getting the right antibiotics because Lyme crosses the blood/brain barrier, and variable "stages" of the bacteria causing only certain antibiotics to be effective during a certain time of the bacteria life cycle. It is just since 2009 that I have started to see papers stating a relationship between POTS (specifically) and Lyme patients.

I am not personally familiar with C3D tests and what they mean (although I have had the test and was normal). I would ask the doc to check complement activity, specifically C3a and C4a (not just C3 or C4). I am not sure how willing docs are to do these tests without cause but if I remember correctly you have had some tests that implied autoimmune activity which often shows increased complement readings and could be useful. On the thread that has been going the last few days about how fit we were before getting POTS, I just posted a bunch of links to papers that talk about complement activity being implicated in many autoimmune and imflammatory diseases. Hope your appt goes well!

[ramakentesh]

When i first got POTS and Ank Spond, yes, but much less so now thankfully. Other than my old favourite - wild pine mushrooms. they always give me almost instant POTS. As does anything that contains any ACE inhibators of any type (Goji berries, salvia elegens, etc).

[anaphylaxing]

Interesting Rama! Glad it's improving!

[HopeSprings]

Thanks Ana and Katie for all the info! Katie - I hope if you go on a new round of antibiotics that it helps. Let us know.

[POTSMama]

Rama, can you pinpoint any med or supplement you took, or something you did, around the time that your food allergies became less? In other words, do you think it was just time, or do you think something external was helpful? Because like Ana, I have developed MCAD with my POTS, and the food allergies/sensitivities are the hardest thing for me still.