Back to the mast cell theory! Update

[faithberry]

Hi Tex and Everyone!

Sometimes I think I will just go around in circle forever!

At my last update, I was pinning my problems on elevated dopamine that wasn't properly metabolizing to DOPAC, possibly due to a problem with the MAO enzyme. Later I discovered that aromatic hydrocarbons can mess with your dopamine metabolism like that. And I'm sensitive to aromatic hydrocarbons (diesel, propane, etc.). I suspect my neurotransmitter test was indicating a state of affairs that occurs sometimes in reaction to an exposure but not all the times. In short, this may be a symptom not a cause. Although symptoms can become other causes!

Back to the drawing board. I got an Organic Acids Urine test. That showed that I do have some non-candida yeast activity. Enough that it should be addressed but not super high. Nothing else on the test was stunning although I did have slightly elevated mandelic acid, which can occur from exposure to styrene...an aromatic hydrocarbon. Surprise. But this can also be the result of low vitamin C levels and mine are probably low.

I finally found a new medical doctor who practices integrative medicine. After listening to my story, he had no qualms about diagnosing me with chronic gastritis, chronic colitis (even though I don't have D), chronic malnutrition, and chronic whole body inflammation (the later isn't an official ICD diagnosis but the others are.)

The strategy was to start me out on some trace mineral IV's (to bypass the gut) because you need trace minerals for all sorts of metabolic reactions in the body. It's the most basic place to start and people rarely react to these (pure) trace minerals. I did fine with the IV at first, but after awhile it became so painful I couldn't continue (like I had a lead pipe in my arm). It really hurt to the point of tears. That's not normal. We tried the other arm and after awhile (but sooner) the same thing happened and we had to stop. I was able to get about 70% of the IV. My body definitely likes the trace minerals but not the delivery. The doctor couldn't explain what was happening but he found it intriguing. IV's can be irritating to the veins, but this level of pain was beyond the level of basic irritation.

The strategy for the second session was to use a local anesthetic in the mix to see if this would avert the pain reaction and to also go very, very slowly. It worked well for averting the pain, but I had a neurological type reaction to the anesthetic. Again, this was very curious. As it turns out procaine metabolizes to PABA which is an aromatic hydrocarbon. Surprise, surprise. Most people who react to procaine are actually reacting to the PABA. So next time we will try lidocaine, which I believe I'm OK with from my experience with a past procedure. We'll see.

I had a brief call with my doctor after he received my blood tests reports. Lo and behold, my serum tryptase is elevated at 17.1. I've had elevated serum tryptase (between 15 and 22 for the last three years) So that brings us back to the mastocytosis / mast cell activation disorder question since serum tryptase is a marker for those disorders. He doesn't know anything about mastocytosis or mast cell activation disorder, but he's very curious about them now. He says, "That would explain everything, wouldn't it?" It certainly would.

I haven't made it for a repeat colonoscopy or upper endoscopy yet. But it appears that there's something more going on beyond my previous LC or (possibly) lymphocytic gastritis. I don't know whether I will have them done this year or not.

I'll be interesting to see what my doctor thinks once he learns more about mast cell disorders. He asked me to send him some information, which I did. So now it's up to him to assess whether he thinks there's a fit. It seems to me pretty difficult to ignore the fact that I continue to have the elevated serum tryptase (and symptoms). That must mean something.

That's where things stand at the moment. I feel like I'm going around in circles, but I hope it will be more like a spiral this time that will bring me closer to a real diagnosis.

Just wanted to bring you all up to date!

I hope everyone doing OK. I send you all my love and appreciation.

[mbeezie]

Hi Faith,

Good to hear from you!

I agree that the elevated tryptase means something. You have had all the symptoms of MCAD but just haven't been able to find the right doctor it sounds like. Julie and I both got disgusted with local doctors and sought out people who knew about mast cells . . . you may need to do the same, even if a consult is done via phone (not sure where you are living these days).

Alot of interest in mast cell activation has been generated by our members here. It does seem to be a growing (or at least more recognized) problem. I am hoping you can get an accurate diagnosis and treatment plan and I encourage you to stick with pursuing a mast cell diagnosis.

Mary Beth

[tex]

H Faith,

It's no wonder that progress is slow, when we have to train our doctors as we go, but at least you are making progress. As Mary Beth says, we're all learning together, but the biggest stumbling block seems to be doctors who are well acquainted with mast cell issues.

Thanks for the update, and I hope this "new" doctor turns out to be a keeper.

Tex