I've been needing more and more antihistamines to get the same relief from my symptoms.  It's scary, but definitely NOT in my head.  My diet has been clean for days - only rice, veggies and chicken.  And, although I did feel well for a period, I'm just needing so many drugs to keep my symptoms at bay. And now I'm gaining weight almost everyday (not an exaggeration).  I'm 100% sure this weight gain is due to these drugs.  I've only been on this tx protocol for a few months and I've gained 8 to 10 lbs.  I workout 5 or 6 days/week and well.. you know my diet.  What I'm trying to say is that I CAN NOT do more than I am now to avoid weight gain -- it's just not possible or practical.

Anyway, given both the increasing amount of meds I need to feel better AND this weight gain - it just seems like this might not be a sustainable tx approach.  Don't laugh.  There's got to be something else better than feeling like hell or taking two types of antihistamines every 4 or 5 hours and getting obese, no??

Anyway, this made me wonder what else I could possible try when I found this interesting article:

http://mastcellmaster.com/documents/cam-theoharides.pdf

You all are a very smart, well-educated group.  And I do feel like if there were a better way to treat mast cell disorders that you'd probably already be doing it.  But in the difficult situation I find myself, I can't help wondering if there isn't another option.  

I'd love to have your opinion on this interesting article regarding natural substances or 'dietary supplements' effects on mast cells.

FYI - If you're curious. This is what I was taking up until a few days ago.  I've now cut back to only 2 zertec.  Increased the Gastrocrom to 200mg QID; cut out the hydroxyzine and benedryl; and feel relatively shitty.

10 mg of Singulair twice a day
300 mg of Zantac twice a day
100 mg of Gastrocrom four times a day
10 mg Zertec every 6 hours (in all honesty I wouldn’t make it 6 hours between doses)
25 mg Hydroxyzine 4 times a day (This seemed to work well at first but I seemed to need it every 4 hours or my symptoms came back)
liquid benadryl (when I had problems – a few times I went thru ½ bottle in a day which scared me, but so does not being able to breathe)

Thanks.

I'm so glad you posted this! I joined the list a few days ago and have been hanging out for my subscription to be validated just so I can post one question ...

Has anyone tried Hesperidin, in particular HMC Hesperidin that is supposed to be a mast cell stabiliser?

I'm about to re-read the article you posted, it looks very interesting and immediately raises the question - Has anyone tried Chondroitin Sulphate?

I'm following this path because Singulair is killing me, side effects that seem to breed side effects.  I need something else and other possibilities including Ketotifen are not available in Australia afaics.

Julian

Very smart, Deb!  I also have problems with exercise if it's hot.  And, it causes me to swell and get puffy.  It can make a 2-5 pound difference almost overnight.

The extra weight could also be edema from triggering all the time.  You might check with your doctor about your meds.  You aren't at the maximum dose of gastrocrom or singulair.

I know people who have had great results from Dr. Theoharides Algonot formula.  It seems to reduce inflammation and helps stabilize the mast cells.  I was getting good results from Quercetin, one of the ingredients in his formula, but I had to take a break.  I think it upset my stomach because I took it without food.  I'm planning to start again soon.

Thank you all for your responses.  You make a good point Deborah.  Thanks.  I do turn the AC way down when I exercise and don't seem to have a problem with it, but I could be wrong.  Joan, you are right too - I know some of this is water retention and it is overnight sometimes, so maybe you guys are right.  And yes, Heather, of course I'd rather be happy than skinny.  But I also would like to take natural stuff IF POSSIBLE rather than drugs with all these side effects.

No Julian, I have not tried Hesperidin.  Honestly, I haven't heard about it.  I've just been focusing on the supplements mentioned in the article above as I have a high degree of respect for the author and figure he was probably pretty thorough in his review of the subject.  But I'd love to know more.  

I'm going to pick up some "Nuero protect", which is the new name for Dr. Theoharides mast cell stabilizing, formula at lunch.  I know it takes awhile to work, but I'm still excited.

I will also probably pick up some of the herb Dr. Theoharides mentions in that article that is suppose to work as an anti histamine.  I will go slow and wait between adding new things.

Thanks again for your comments.

BTW - Dr. Theoharides' assistant told me he's speaking at an autism conference on November 13 at 9am in St. Petersburg.  That's close to me so I'm going to try to go for the day.  Apparently, his talk on autism will be focusing on mast cell issues.  Interesting, huh?  She thinks I might be able to ask him a few questions afterward too.

I'll be following your experience with interest.  From the website NeuroProtek will not be available until October 11th and it will be expensive (to me, but maybe not compared with other treatments) at one bottle a week (8 caps a day, therefore $33 a week).  Did you consider using Algonot Plus as Joan says gives people good results?  Anyway I hope you report on your experiences.

Hesperidin I only know about from web search, Thorne Research have a product based on it called HMC Hesperidin.  They claim ...

"  -  a citrus flavonoid that supports blood vessel health*
  -  blood vessel stabilizing effects can reduce the incidence of menopausal hot flashes*
   -  stabilizes mast cells that store and release histamine*
   -  a water-soluble form of the flavonoid hesperidin

Since I also have problems with sensitive or brittle blood vessels (small knocks on hands and feet cause bleeding due to splitting blood vessels) I thought it was worth a try.

I am working on the theory that MSADs are a heterogeneous group of problems with different causes and pathways, so I guess that one treatment might help a particular person better than others depending on what pathway it works on, therefore it's worth following up different treatments.  Unfortunately for me it seems that only one of the usual medical treatments is available here (Singulair in Australia) so I'm pushed towards supplements that I can import.  Also my doctor knows nothing at all about MCADs so I'm on my own in choosing and evaluating treatments.  I already take zantac and an antihistamine (which I'd taken up just because they made me feel better over the last few years, without knowing anything about mast cell disorders).

I agree about trying one thing at a time, so will be trying to do that, although I don't know how long should realistically be allowed before evaluating results.  If it really takes 6 or 12 months for things like Algonot to work it's going to take a long time to work out what suits each individual  

So I'm looking forward to your observations.