Government: FUBAR

I had my blood tested last Thursday. I'd started having some stomach problems and the rashes and itching had gotten so bad I could not tolerate it anymore. My rashes had turned into sores, they had gotten so bad.

They took about a quart, it seemed, so I hope it shows something.

I see the oncologist again on the 18th and I'm hoping he will have found some way for me to get the tryptase levels tested.

My internist heard from Dr. Robyn at the NIH and her office is telling me that I have to have the tryptase level test before I can be admitted into the NIH study. The lab work would be sent to the Mayo Clinic. And I would have to pay for it. But, I have NO money.

Seriously. I'm selling stuff on ebay to pay my bills.

So, I emailed Dr. Robyn with a nicely worded WTF? basically. I thought I was being considered for a DIAGNOSTIC study!? Do I have to have the 3 doctors diagnosis confirmed by blood work to enter a DIAGNOSTIC study??

And guess what? She emails me back that she's no longer with the NIH and will refer my inquiries to the appropriate panel.

Pointless. Hopeless.

Meantime, I've gone back on my antihistamines and am barely conscious most of the time. I had adjusted so that they hardly bothered me but now I've got to do it again.

But, thank God!! The itching is now tolerable. And I can breathe, mostly.

Kinases? Oncogenesis? Tyrosine? What language is this?

Here it is:

For example, the NIAD researchers recently discovered that patients with a particularly aggressive form of the disease have a mutation in c-kit tyrosine kinase; such patients respond spectacularly well to the cancer ‘wonder drug’: imatinib mesylate (Gleevec). However, the most frequent mutations—those in c-kit D816—are relatively resistant to imatinib. “If you don’t find the 816 mutation you can tell parents that their child’s chances are pretty good,” says Metcalfe. The antibiotic geldanamycin (17-AAG), which inhibits Hsp90, is the latest recruit in the fight against mastocytosis as it destabilizes various kinases that are important in oncogenesis.

The Purple Chicken

Back on April 13th, I posted how much better I had felt for awhile after finishing a Z-Pak (zithromiacin antibiotic) for a sinus infection.

Well, when I went to the clinic at the end of last month, the doc put me on a 10 day round of amoxicillan, as we suspected that the sinus infection had returned. It's hard to tell. While I used to have a temperature of less than normal by a degree or two before I became ill, I now run a low grade fever all of the time now. The doctor told me this was normal for masto, which was news to me, but since he has treated many masto patients, he would know.

Consequently, running a low grade fever all of the time doesn't assist in determining if I have another infection of some kind. But, since I had been more congested than is usual, which is still alot, and the mucus was, well, you know, ooky, more ooky than usual, I took the antibiotic.

Again, I have had the same reaction. I have felt better for more than two weeks now, since finishing the amoxicillan.

Has anyone else had this kind of experience?

I read somewhere about a week ago where masto was being treated with some kind of antibiotic and when I find it again, I will post the link.

As (my) luck would have it, the doc wants me to have a blood test to measure IgE levels, etc., but to prevent skewing the results, I can't be taking any of the anti-histamines. I have read many horror stories about masto patients trying to get diagnosed and having tests while they are asymptomatic resulting in the tests being negative. So, since I've been pretty much asymptomatic, I've been putting off the blood test.

The rashes never went away and without the anti-histamines, they have intensified greatly. About a week ago, the sinusitus and the rhinitus returned. Now, I'm having pruritus (itching randomly all over whether rashed or not).

I've continued taking the proton pump inhibitor every day but I haven't been taking the ranitidine and, amazingly, haven't been having the digestive problems, upset stomach, diarrhea or any of that. If I'm late taking the proton pump inhibitor (Protonix, now), then I'll start feeling quesy but once I take it, I'm okay. I've had little bout of diarrhea so far, which is a drastic improvement.

My mind was pretty clear for several weeks but I have been noticing a decline in the last few days. Struggling to find words. Forgetting stuff much more frequently. Scrambling words. Just yesterday, I was trying to mention a new local restaurant to my mother and instead of calling it The Purple Kitchen, I called it The Purple Chicken!! We laughed about 10 minutes over that one.

I'm going to give it a few more days before I go for the blood test. But, probably not much longer as the itching is really getting to me. If I'd had any sense, I would have taken the blood test before beginning the antibiotics, but sense is definitely robbed from me when I'm symptomatic.

Do any of you suffer these cognitive difficulties like I do?