Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Aug 25, 2012.
Thanks for the link, camas. Very helpful.
Had to postpone my follow-up appointment with the dermatologist today because my cab was late, and they wouldn't take me even five minutes after my allotted time. Doctors. So won't know any details about my biopsy results until next week.
As I was getting ready to go, I noticed something interesting. My terribly sparse eyebrows are filling in. Last time they did this was when I was on prednisone. I see that hair loss is one of the symptoms of mast cell activation, so I'm guessing it was the NeuroProtek. I'm going to start taking it again, but will go slowly (one pill a day) rather than diving in like I did initially.
Hope everyone else is doing well on the protocol...
That's interesting that your eyebrows are growing in. I've noticed hair thickening with dhea and
testosterone but never more hair.. It's a dramatic change so it's hard to miss. I'm not sure what role age has
to do with this either. I'm 57.
I'm still getting glutenned regularly by company so it's going to be difficult to judge my reaction
to the mast cell protocal. I'm still taking 25 - 30 mg of Wal-zyr during the day and Benadryl and 60 mg of Allegra a nite.
I'm having exercise (busier than usual ) induced petite mals and and increased need for sleep but those
are gluten reactions for me too. I need Klonopin every nite for nocturnal myoclonus right now too. And that's
definitely a gluten reaction for me. I "think" I had some gluten ataxia but was really to pre-occupied to pay close
attention. I was falling over while walking in the sand easily tho. (just another drunk on the beach lol)
I'd noticed recently that I have an increased need for meat so I'm working getting more too.
The upside to being on allergy meds is less swelling : ) .. Duh ! Tc .. X
Interesting, you're building muscle. On my research-to-do list: is histamine catabolic? Or is the craving for protein due instead to the testosterone? Did you begin that recently?
I've been off the testosterone for awhile but restarted 10 mg dhea about the same time I started the mast cell protocal.
So far. Kow. No long wiskers or thickened facial hair. I restarted 10 mg pregnenolone too. I'm trying to see if
these help my allergies / swelling. If not, I'll try other steroids once I get time to research these.
So craving meat means I'm building muscle. Interesting. I backed off eating 1/4 lb per meal in Jan 2012 and this is
the first time I've craved it. I'm eating at least 1/4 per meal now. Mostly king crab, scallops and lamb. I can't tolerate even grass fed beef now. I had 1 Whole Foods all natural chicken and I was ok this time. So far. Chicken and turkey were putting me to sleep for years.
Tc .. X
Yeah, nice to wake up without swollen hands and face! So interesting that you can eat crab and scallops (my throat swells just thinking about it), but not grass fed beef. Shows just how individual our allergies/triggers can be.
Just back from the dermatologist. He said the previous biopsies showed normal skin, which mine clearly is not. He's still convinced it's TMEP mastocytosis and wanted his pathologist to have a second look, so I had two more holes punched in my upper arm -- one over a lesion and one over normal skin. This time he didn't use epinephrine in the shot which can cause mast cells to degranulate (per my suggestion). I'm so glad he wasn't insulted by my input, as many doctors would be.
He told me to double my dose of zyrtec, so I'm going to work on increasing it as long as I'm not too sedated. I tried allegra for a few days and really preferred the way I felt on it, but had one big problem -- back pain which is a rare side effect (of course). So I wait. Again.
Hope everyone else is hanging in there...
Good to hear your doc listened to your recommendation on the biopsy. Sorry you have to keep
getting these tho. I had melanoma in 98 so I've had far too many biopsies since then.
Hope upping your zyrtec helps. Did you try different brands of Allegra ? It could've been a filler
causing your pain. I'm taking 90 mg at nite since it was making me sleepy.
I'm surprised at how much staying away from beef is helping my gut. I'm good with lamb which
surprised me since it's a similiar meat.
I'm still taking the same h1s. I'm not feeling as energized from these as I was but since I have company I'm doing everything I can thing of to keep up. From Loratab for back pain, to klonopin for seizures abd insomnia, mb and adb12 several times a day
etc etc. I'm actually doing well, kow, considering I thought I would've crashed by now. Kow.
Tc .. X
Thanks, X. I don't mind the biopsies as long as they are in a place I can reach. I like being able to take the stitches out myself. Sorry to hear you've had to have so many since your melanoma. Gosh, as if you didn't have enough to deal with!
Unfortunately back pain is a known side-effect of Allegra. If I really got in a bad spot and needed it, I could take it. I just could count on being in a fair amount of pain and not being able to move very well while on it.
Here's something that's kind of interesting -- an old study from Theohardies showing that benzodiazepines have mast cell stabilizing properties. So maybe klonopin is helping in more ways than we realized?
Good to hear you are holding up well even with company and have found another meat you can tolerate. I haven't had lamb in years, so may have to give it a try.
Have you had your B12 levels tested? They say they can be low in mast cell disorders. I take a sublingual every day, but wonder if I should boost my intake as well.
Thanks for responding!
Histamine is highly catabolic. 10mg dhea is nothing. I take 200-300mg a day most days if in pill form. If in transdermal form about 50mg does the trick. Digestive absorption of dhea and pregnenolone is quite poor, especially the non micronized forms.
Some people may be different than others but to claim that mast cells are spontaneously activating without the presence of some infection (and most likely hypothyroidism, hypocortisolism, or some other endocrine insufficiency causing the immune dysfunction) seems ridiculous to me. I have yet to see one person recover from CFS based solely on mast cell stabilizing treatments.
Why so condescending, xks201? No one here is talking about "recovering" from CFS by stabilizing mast cells. We're just attempting treatment for possible mast cell activation syndrome in CFS as proposed by Dr. Theoharides at Tufts (see the link in my signature).
I also have a tentative diagnosis of TMEP Mastocytosis, so may have been misdiagnosed with CFS for the last 25 years. I've run across more than a few former CFS and FM patients on mastocytosis sites, so Dr. Theoharides may well be on to something.
Look at Table 3 on the following article for a list of activators: Mast Cells and Stress—A Psychoneuroimmunological
Another, from the recent florinef/BNP thead:
Ah yes, bacteria as mast cell activators...and they activate cyotkines. That does make sense.
Saw my PCP this afternoon. He said a mastocytosis diagnosis sure fits all of my symptoms. He would know since he's been hearing about them ad nauseum for 10 years. He's going to do some more research, but did use the mastocytosis diagnosis code for my visit.
He faxed a prescription into a Canadian pharmacy for an Intal (mast cell stabilizing) inhaler for my ongoing low level asthma and also prescribed Doxepin which is an antidepressant with strong antihistamine properties. He recommended supplementing the Neuroprotek with even more flavonoids -- quercetin, nettles, spirulina, etc.
The biggest concern right now is my bone health, so he ordered a bone scan and another test of my vitamin D levels which have been low. I've been using a vitamin D light since I can't tolerate the supplements. He's also throwing in a serum tryptase test and said he could do a 24 hour urine histamine test and some of the others later depending on what the second skin biopsy shows, but he's pretty much of the opinion that my symptoms speak for themselves. Although I'd still like to have some kind of definitive lab result, but that's just me...
funny how many of us seem to have asthma/breathing problems. I'm running some experiments right now which may yield some interesting results. I'd probably rather have a bronchodilating inhaler than an antihistamine if I had asthma, which of course I do.
Yeah, I have an albuterol inhaler, but it mostly just makes me jumpy. I've had better luck with the herbal formula 'minor blue dragon.' My asthma is mild, but chronic. I'm hoping the Intal inhaler, which is cromolyn sodium, will generally improve my breathing. Apparently you can't get it in U.S. anymore because it uses CFCs as the propellent.
here's a cite for the histamine->osteoporosis connection, if anyone's interested:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671373/ 2009 PMC FFT
"Histamine Promotes Osteoclastogenesis through the Differential Expression of Histamine Receptors on Osteoclasts and Osteoblasts"
Also Camas, I suppose you know that Mg is necessary to make vit D, and Mg is not uncommonly low in PWC.
Paeonia lactiflora root, Pinellia ternata rhizome-prep., Cinnamomum cassia twig, Schisandra chinensis fruit, Ephedra sinica herb, Zingiber officinale rhizome-dried, Asarum sieboldii herb, Glycyrrhiza uralensis root.
I hope that I notice any report that you make here about the cromolyn inhaler in future. Should be interesting.
How about inhaling quercetin? I found this just now. talking about allergies:
Here's a list of ingredients of Minor Blue Dragon, I only recognize ephedra... maybe Glycyrrhiza is from licorice.
Albuterol did nothing for me. Pseudoephedrine, neither. If those physiologic antagonists didn't help, maybe my low O2 handling isn't from histamine after all. Even so, though I'm high histamine myself, I wonder if my SOB might really be from low iron. Bad guys in the gut might be snatching iron before I can absorb it. My fingernails aren't exactly brittle, but sometimes they split - supposedly a low iron symptom. I've never had a CBC, though, to look for microcytic anemia - I so I don't know if I have low Hgb or MCV.
I did one time have a very, very drastic cold-induced asthma. It was literally all I could do just to breathe enough air to stay alive.
Thanks for the links, Sherlock.
Every morning I make up a liquid concoction of magnesium and buffered vitamin C that I drink throughout the day. Nasty tasting stuff! I do both to bowel tolerance, but haven't actually tested the mag in a while, so may need to add more to help with my vitamin D levels. Although we've had a nice summer, there's generally no surplus of sunshine here in Portland.
Here's the list of ingredients in the minor blue dragon formula I'm using. I had a great CFS M.D. for a number of years who was also an herbalist. He was the one who put me onto this. It works better than the albuterol, but I'm hoping the Intal inhaler might be even better.
I'm sorry to hear that albuterol doesn't do anything for you either. What are you doing for your asthma? Inhaling quercetin sounds like an intriguing idea. You go first!
You can also try a Google Site Search
Separate names with a comma.