Hi, Buster.

I'm new to the forum, too, and am currently being worked up for mastocytosis by doctors that tell me they can't dx it.  Do you mind my asking the name of the researcher you're seeing?  Feel free to PM me, if you want.  Just yesterday I wrote to a researcher and am wondering if it might be the same one.

Acidophilus - I react to that as well as every digestive enzyme I've tried.  For some reason, it causes inflammation in my spine and bodywide myofascitis within 10-20 minutes of ingestion.  I'm thinking it's fermented or I've developed auto-immunity to those bacteria.  Interestingly, the level in my gut is below normal range...not sure why but I can't take probiotics to correct the deficiency.

Like you, I can only eat a handful of foods that don't put me into neuromuscular meltdown.  I also have Ehlers-Danlos Type 3 and complete avoidance of problem foods and known triggers puts those symptoms in remission - appears to be a connection.

Sorry, I can't answer any of your questions.  I've been having to treat myself in lieu of needed medical assistance that's just not available to me here in AZ.  My PCP and some other docs prescribe testing and meds (pure cromolyn and chlorophenerazine, both compounded) for me.  I was recently referred to a hematologist and am now waiting on the results of my BM A & B.

Best Wishes!

Deb Mc

I just wanted to elcome you, both Buster and Chaco!! We are glad you made it here

Buster, we have people with all types/levels of mast disorders--its just that those of us who have more symptoms have bigger mouths too LOL... Im glad youve found some meds that help you. We are similar in some was and also different too in some ways and finding what we each respond to the best is mostly a matter of trial and error.. thats what happens with a rare disease .

You will need some H1 and H2 antihistamines.. especially Zantac seems to be the one we respond to the best--most of us are on 300 mg twice a day. You will also need some type of mast cell stabilzer--I see youre on Gastrocrom already (thats one) Ketotifen is another one.

We are just so lucky that there are some very brilliant minds here, like Lisa and Debbie, Heather, Joan and Jill.. they have experience and education that have helped soooo many people!! This is also the most compassionate group of people I have found on the web

The good thing about mast cell disorders is.. you dont ever have to advance in the disease, IF you pay attention to your triggers and, keep well and get enough rest.


Wow, Deb Mc, youve got alot on your shoulders! I hope you have good results from your BMB...

Have a wonderful weekend!
Hugs,
Ramonma

Hi and welcome! Typically patients start on what I call the basic meds. They are the histamine blocker meds (H1 and H2 blockers). For example I was a terrible anaphylaxis case, and yet Dr. Akin only started me with:

Morning:
300 mg zantac (prescription)
180 mg allegra

Evening
300 mg zantac
10 mg zyrtec

I had continued itchiness, so he eventually added 10 mg Singulair. I have been able to stop taking that, as my symptoms got so much better. Now, I bet that if my anaphylaxis had not stopped with these meds on a daily basis, then he might have had me try some other meds, eventually getting to the gastrocrom. That is just my guess on  that.

Like you, I have a hard time with antibiotics, and I wonder what if I need some sometime down the years. What will I do? It ends up being trial and error. You try one. If you get a rash, you discontinue and take some extra histamine blockers. Then you try another. I have one right now that I can take if I get sick. Eventually I will react to it, as that is my history. I can generally take an antibiotic for several years and then I will start to react to it. Luckily I rarely get sick.

You need to try a histamine blocker, just one of the basics, to see if it is okay for you. Just try one at a time, though, and give yourself maybe a week before trying a second one, which you could just add to the other one. If you end up needing an antibiotic at some point in life, it will help you to know if you get a mild rash, that you could start taking extra histamine blockers to finish out the antibiotic and kill whatever infection is going on. It is a tough situation, because you want to take an antibiotic to get well, but you have to fight the bad effects of the antibiotic with the histamine blockers. You won't want to discover for the first time then if you can take a histamine blocker. You need to find out now.

The good part is that you are not a shocker. Rashes aren't great and they indicate a problem, but it you never experience anaphylactis symptoms, then that is great. If you try a histamine blocker and it bothers, you, it sounds as if you will get a rash but no anaphylaxis.

When trying any new med, you must make sure that you are as trigger free as possible. Otherwise, you can be reacting to something else and mistakenly think that it was the new med.

Hope this helps!

By the way, Ramona, is so modest -- I go to her for advice! She is the nurse among us and a great wealth of knowledge along with all the other great people on this forum.

Hi Heather,

I was actually in the process of writing an email message to send to Dr. Castells when I found someone locally who might be able to help me. I also thought Dr. Castells would be the perfect doctor to see because of my problems with mast cells and drug intolerance.  The researcher I am seeing knows all of the experts in the field and will get their input if it is needed.

I have not ruled out going to see Dr. Castells in the future if that becomes necessary.

Thanks for your suggestion,

Buster

Hi Lisa,

The tests I have had so far are tryptase, 24-hour urine histamine (not N-methyl-histamine), IgA, IgD, IgE, IgG. I am in the process of having 3 additional tryptase tests done over the course of 3 weeks. The one baseline tryptase test done a year ago was slightly elevated (15). The histamine and the IgA, IgD, IgE, IgG tests were all normal.  I am still in the process of doing the 3 tryptase tests.

I am being skin-tested for allergies, but so far, there have been no major allergens detected.  The skin tests for food are either not reliable or I have food intolerances, because I react to many foods which tested as negative.

I have had blood serotonin levels taken in the past and they have always been below normal.  I take 200 mg of 5-HTP a day to boost my serotonin levels.

I will PM you regarding the research you have on this.

Thanks for your help,

Buster

Buster,

Keep in mind that sometimes our local doctors are not actually knowledgeable enough, even though they think they are and we really like their personality. It is important to have that type of doctor because he is motivated to help you, but there really are only a handful of true mast cell disease researchers in the US. Who knows, yours could be one of them! However, if he is not, just always keep the ones in Boston as a backup in the back of your mind in the event that you don't get better in the coming months.

Buster:
I had my serotonin levels checked as well & they were on the low side but not below normal. I tried some 5-HTP regular but it made me so tired that I quit. I have some extended release waiting in my med cabinet but have not been bold enough to try. What do you take?
And what difference did it make?
By the way you might try zrytec, allegra or claratin before you give up on H1's
Mike V