One thing I want to say about this, Melissa's talking about something that is really great, some kind of medication or suplement which may help patients dealing with depression.  Depression is sometimes one of the symptoms masto patients can struggle with due to the mediator release and our having to live with a chronic disease.   However, in this case Melissa's talking about a patient who is NOT a masto patient.  

We all know that medications are tricky for us to take and that some of us patients due to low serotonin levels can't take any kind of anti-depression meds which may interfere with our already low levels of serotonin.  Masto has been found to not only raise the serotonin levels in some patients but to also lower them way below normal.  These patients will have their masto symptoms made worse by these medications and so you must have your doctors involved in this.  Your doctors need to know if the L-methylfolate will cause MC activation, but you also need to know what your serontin levels are and if the antidepression medication you are using will create adverse affects.  Unfortunately most neurologists do not know how these drugs affect mast cells since this is an area of very little research and study.  This kind of information is something your doctors need to contact the masto authorities in order to gain more understanding as well as to assure that you will not begin reacting to the medications.  

When my doctor tried to put me on doxepin, a known SSRI antidepressant and an antihistamine, I had adverse reactions to this and it caused excessive sleepiness!  It was 5 days of pure torture and it was because it had attacked my kidneys that my nephrologist took me off of it - my immunologist didn't even have time to gain the insight he was hoping for!!


So, although it may seem like a good thing, please be very careful and talk with your doctors about whether or not you can use it.  


Lisa


Melissa, thanks for the information!   I hope it may help someone!  

HI Kim!  I'm really glad you feel this helps you.  Thanks for the praise!

I'm glad your doctors are trying to address these issues with her.  I'm no doctor, Kim, as you know and one of the problems we here on the site face is that we don't always know how to balance the information that is out there and what may affect me may not affect another person.  This report of Dr. Metcalfe's is a singular report that hasn't yet been proved or disproved.  Unfortunately for us masto patients, often, due to the lack of research, there is only one report that we can go upon and our doctors have to try and figure it out from there.  This isn't considered sound medicine, but it's the best that we patients have.  Until more research is performed and more study done upon how mastocytosis affects us patients, be it patients who are SM or patients who are MCAD, we will continue having to try to "wing" it with our doctors.  

My suggestion to you is that you make sure you've got your doctor's email addresses so that you can send them articles and information which will help them to learn about masto without a great deal of effort on their side.  You can become their researcher and make their studies more efficient.  This will benefit both you and them because it will help you learn more about masto as well as they and this way you will all be able to take better care of Brie.  

My next suggestion is that you ask your doctors to run a serotonin test on Brie to check her blood levels to see how the masto is affecting her.  She may not have any issues with her levels and therefore there my not be any motive to not use these medications on her.  It would also be a good idea for her to have a cardiovascular investigation to see if this sleepiness of her is perhaps being caused by a cardiovascular problem.  My doctor has told me that the mix of the H1 and H2 blockers can sometimes create a beta blocker affect in some people and we suspect that this may be happening with me.  I get bradycardia and this could be behind some of her reacting.  

You see, Kim, this thing of medicines is tricky business and because your doctors are not masto doctors, they are having an entirely new world opened up to them and they're having to learn as they go along.  My dermatologist has had to remind me of this in regards to my other doctors in that they are not going to be so aware of the medications and their interactions with the masto.  And the fact that they don't know that each of us are our own case, that there's no way that they can standardize our care because the disease doesn't work like other diseases, this is important.  So, since you are aware of this, you must help them learn that with Brie, they must not only have this understanding that each of us is very much our own case in regards to the disease and our medications - they all must be strictly tailored to each patient.  And that in Brie's case, she's a rule breaker case, like me, and they need the help of the heavy weights to get this right.

Kim, most of all, I'm so pleased that you're finding the help and support you are needing!!   It's people like you, who are pushing so hard with their doctors to find help, that is what makes this forum work!!!  I'm so proud of you!!!   You're a great mother doing whatever must be done to help your child!!!