My doctor (Sarah Glover) at USF in Gainesville wants to do Cluster Immuno therapy on me.  My understanding is that it is basically allergy shots administered in a cluster as oppose to over a longer period of time.  Sounds scary to me.  Anyway, she's a bright woman and has done a few really smart things with me, but she had me WAY under medicated and I figure that she can't possibly have a lot of experience with MCAD patients. I really don't want to be a Ginny pig.

What do you think?

Has anyone tried it? Did it help?  Did it freak your body out?

And if you've never heard of it - PLEASE just tell me that too.

Wow...I have never heard of cluster immunotherapy.  I am someone who does have environmental allergies and am allergic to some medications.  I do immunotherapy.  However, I did the traditional shot schedule where they build you up slowly.  First off, I would make sure I was allergic to some things.  I am allergic to pine trees (yayyy live in the South where there are a few million), alder trees, all forms of mold basically, dust mites, some other weeds, etc.  Last time when he did some food allergy testing he kept me on prednisone while I went off the anthist for the testing so my symptoms would not worsen(btw...was not found allergic to any of the foods tested...yayy).  He does the shot testing in your arms, not just the tiny pricks on the back.  Right now he has me on zyrtec and zantac and singulair plus inhaled steroid and astelin sprays.  He added the singuilar after I told him I got flu aches the day after my shots.  He said I can double up or take it an hour or so before the shot if I need to.  My concern with the type of immunotherapy you are talking about is that it is really stepped up timewise and our systems are already immune "jacked up" as it is.  Regular shots start out at a very very low dose and you have a few days to recover.  My allergist makes you stay for 20 minutes after every shot, just to make sure you don't react. Even  people without our weird immune systems can shock from a shot after years of taking allergy shots.  If I did not have some pretty serious allergy issues, I would NOT be doing the shots.  My problem is, that they DO bother me, but if I dont go every week or two (two shots a week), I start having really bad symptoms....so as they say, I am between a rock and a hard place.  He told me I would probably need to do them the rest of my life, so we are just trying to make them less impacting on me.  I really would get a second opinion on that treatment...Another thing he told me is to be careful of any supplement that are considered immune system boosters....So anyway, that is my looong story (sorry) and my advice.  Hope it helps, just as a patient with both sets of problems, not a dr of course.

Mmmm, okay here are my responses to that
1) I would get my symptoms under better control before I got tested or else ask for blood testing rather than skin.  
2) I would get tested before I came to any decision
3) If any, I would opt for traditional treatment (as far as I can read it is the same thing as Cluster, but slower, to me which makes sense for those of us with more complex problems) you could tell her you want to be tested before you make any decisions.  Then, if you want to take it slower, tell her that.

I will tell you this... I have done immunotherapy for several years.  While it has definitely helped my environmental allergies (before I had sinus headaches basically everday and many days my eyes would almost be swollen shut from tearing up all day...now this happens rarely), it has done absolutely nothing for my "baseline" level of MCAD symptoms (neuropathic pain, flushing, IC, gi problems).  Now for someone else, the result could be different.  I really hoped they would take away my neuropathic pain and reactivity in the summer and of course the IC, but did they?  Unfortunately, no...but did they help my general quality of life, yes because I am not suffering with the above symptoms every day from the IgE mediated allergies I had.  I guess I am one who just got the double whammy, but I knew I personally could not live with both sets of problems, so I decided to fix one that I thought I could, which was the allergies. But, my allergy symptoms were pretty pronouced, as in they were talking about sinus ultrasounds, surgery, and all that lovely stuff.

Here's what I would suggest, maybe stay on your increased medication for awhile and see how it goes.  Just put her off without making her mad.  If you get better, you can always allergy test later on.  I run into the same issues....my allergist I think still believes that my symptoms are all caused by some hidden allergies that we just haven't figured out yet....I have been tested for a lot of stuff and I am indeed  an allergic type person, but I also have symptoms that can't be explained by allergies.  So, where does the line get drawn...someday maybe the researchers will get it all figured out.  Just be careful.  When my symptoms are flared in the summer, I react weirdly to every shot I get and I am not a shocker. I even considered stopping them but, when I do all those old allergy symptoms start back up.  One more thing, could you ask for a consult with one of the well-known drs. in MCAD as you do have a diagnosis?  

Why do I get on here when I want to say seriously intelligent stuff but Im exhausted and it's late? I will quickly tell you my experience. I reacted horribly very horribly to immunotherapy, I've done various types including the latest "sublingual" which almost killed me. Every time no matter how small they diluted down the serum I severely triggered. I will never ever ever try it again. The docs kept blowing it off and it'll be better the next time. My symptoms upped in severity since the "latest" round of experiments and have never improved. I do have sever environmental triggers along with both food allegies and sensitivites. I am a gastro anaphalaxis  sufferer, hence not as well known by doctors even allergists.  There is a difference between allergic reaction/ triggering.  Although the treatment is the same. Many things will trigger you into anaphylaxis yet an allergist will tell you, you are not allergic to said substance. My two cents, again you have to take individuality into account. The trigger for me in the serums was phenol the doofs didn't figure it out I did. My environmental allergies worsened severly. When I say environmental I mean chemical, not pollen. Now I firmly stand behind sublingual immunotherapy for a normal allergic person, my son's done it, my homeopathic md, and major results. However a masto patient may just trigger with every dose. Dr Castelles has successfully done it for treatment for malig masto for medication but as far as the last research I'd read it was very short term successful.