Hi to anyone reading this.

Where do I begin?  How about a new approach I am very sick have been for nearly five years and do not have a diagnosis....I am sure you have not heard this before.

Lets see what have I accomplished and done during my life....hmm how about just saying "when this body did contain a spirit a kingdome for it was too small to abound"

Anyway on 9/2 I am going to see a doctor at B&W In Boston based on a refferal from a doc I see at MGH who thinks in the realm of a CU.  I am very leary as I have seen so many docs and this is a repeat visit as I felt the first one was not productive, hopefully this one will be.

Everyone with masto like I appear to have a constellation of symptoms.  I have had numerous 5HIAA's all negative, PET Scans negative but have had ANA's as high as 1:2560, C4A as high as 20,000+, elevated ESR's and ACE's with nothing to indcate what is causing this inflammation and further investigation for most of the docs I have seen well I guess just to time consuming for them.

So now because I had an elevated trypase at 11 --- 0-10 being norm I am going to see if I have a form of mastocytosis.  Never thought this is main cause still do not but I do on occasion have black spots on legs (come and go, small areas)that I thought were RMSF of possibly hair folicles as at times look like that,  but most modalities like antibiotics have not been effective and some of the more extreme one make my symptoms worse, espcially if I receive IV.  Prednisone has no effect on me and one CT Scan I had with contrast made me feel like I was going to taste lunch twice once going down, the other coming up but that was avoided. That was the first time that ever happened.

Three of worst symptoms are episcleritis, stomach issues and least surely not last brain fog along with bone and muscle pain.  It seems when one inflammed all inflammed right to my thyroid.

I had to throw the work towel in because of severe flushing which at times made it feel like back was going to crack in half.  

One biopsy I did have was a conjunctiva biopsy as there are a list of diseases that have ocular manifestations.  I was hoping this would uncover my misery I mean mystery illness.  It was unrevealing had an over reactive inflammatory response but what was present on a GIEMSA stain was numerous mast cells around the vessels of the stroma, more numerous that seen in a normal conjunctiva.

During the time I went to B&W I was told that the steroids would resolve my eye issues....they did not and so life as unrelenting as it is goes on and so did I.

I have been through the grinder with docs and I am hoping this repeat with the docs at B&W will be the final step to get relief.  

Is anyone familiar with the conjunctiva biopsy/GIEMSA stain I had and if so how reliable is it in determining a mast cell disorder?  I am not sure if it is enough to forego a BMB but would like to think one may be needed.  I also have a iliac bone lesion and wonder if related?  I am allergic as of late to everything under the sun including the sun but not sure if is because of masto or an underlying autoimmune issue.  I have also read masto is and is not considered an autoimmune disease.  Maybe I will be the determining factor.  

I think this ---- a little helpful not sure
Mast cell stabilizers can help curing patients with allergic conjunctivitis when cold compress are no longer effective. They tend to have delayed results, but they have fewer side-effects than the other treatments and last much longer than those of antihistamines. Some patients are given an antihistamine at the same time so that there is some relief of symptoms before the mast cell stabilizers becomes effective. Doctors commonly prescribe lodoxamide and nedocromil as mast cell stabilizers, which come as eye drops.

One question I have is since I have fog how good are these meds in that they are able to break the blood brain barrier?  I am on 40mg of zrytec which I think not nearly enough if I do have a related disease so I await the appt I have as 40mg doesn't even touch me.  I am not sure but is zyrtec considered a stabilizer?  I think not but not sure.

I also have thyroid issues and have read that some people with CU have had the symptoms relieved with thyroid meds.  I found this interesting and will bring the article to Boston with me.  

What can I ask that will possibly will  give me hope I will get a diagosis on 9/2 or somewhere around there..really cannot think of anything other than what I have mentioned and will have to painfully wait until then if not longer to find out.  Anything anyone can add is appreciated.

Thank you....and save the sympathy for the devil...

Patricia,

  Excuse me if I asked this before.  Somtimes hard to remember!  Was your husband tested for parasites?  Just thinking about parasites in fish and the article that talked about parasites as triggers for mast cell problems.

Patricia,

I am going to see Castells.  Did she help with some of your husband's other symptoms aside from masto?
Did she run the IL-13? How about an ASST?  What other testing did she do if you do not mind?  

I once asked an immunologist if he knew what a CD57 was has to do with killer cells right down his alley when he said no I knew that party was over...then the guy starts printing stuff of the internet like I was the one that was going to read this info, figure out what I have and treat myself so Boston has been a bust for me and I am not sure things will change much, hope but we will see.  I told him he was a crackpot and left his printouts with him.  Certifiable and he is allowed to treat people for what I have not a clue.

As far as the ketotifen the only thing I currently take is zyrtec and no I do not break it up and has not offered much. Like I said if it is this I think I may need a mast cell stabilizer but things just do not totally fit.

How do you get the ketotifen, through a compounding pharmacy?

Is he on any other meds for the autoimmune piece and for the masto piece?  How long did it take before he felt a difference on the meds?  I know everyone is different but I am not sure if three weeks is a reality.


I used to be stationed at Fort Belvoir and DC was my back yard and hopeful someday I will be able to take family there.  

I was hoping to get into see Akin but the doc coordinating my care had set something up with Castells so that appt was off, to bad I could have gotten in to see him nearly a month ago and if this doesn't pay off I will be pissed.


Hope you husband is doing better and thank you for the encouragement, surely is lacking.

How did you get into the NIH?  I was told to try to get in there.  Is it tough?  This is why I wanted to see Akin he is from U of M and the NIH.  I would like to see if there is a mutation issue here or not Akin I think is more familar we will see.  

I live about 60 miles from Boston so I take the train in and train out all in one day.

I have been to see her in the past so I am a bit skeptical and need my autoimmune addressed but no diagnosis no treatment is the way Boston docs look at it.....maybe a different approach is coming could surely use it.  I will not take any meds on my own I will let Castells figure out if an increase is needed but like I said I think I need a stabilizer along with any antihistamines if in fact I do have a related mast cell issue.

The MAYHOLE did the same testing I had back here in the east with the same results negative I would think twice about going there but it would be your choice I was not impressed and was told "we probably will not figure you out" they were right and I should have left after the rectal... my opinion---over rated docs.

There is a doc at B&W a rheumy I heard was decent am not sure but I know someone that sees him.  As far as the chemo etc....lotta people take embrel, celebrex, interferon there are risks but constant inflammation breaks down tissue and also increases chance of overlap syndromes....I would take the chance, but that is me.

Did they run the testing for a BMB at B&W to see if there was a mutation component Kit 816 and CD117?  They did correct?  Did they do an ASST or an IL-6.


The only test aside from my trypase which was mildly elevated was my conjunctiva biopsy which the interpretation was that there were numerous mast cells in the stroma, more numerous that in a normal conjunctiva.   I am not sure how this related to a BMB or a skin biopsy.  My thought is it should be somewhat of an indication like I said the stain used was a GIEMSA stain which is the primary stain used for masto that and one other as most other will not be as sensative for masto I believe.

Did the NIH recommend any treatment?  I am not a big believer in gastocrom either that or I have other issues as I was on it for about a month, maybe not long enough and did not resolve anything so maybe masto not it, sounds like it but the symptoms are so non specific for any disease.

Autoimmune/genetics most immunologist do put that component in same catagory it is getting beyond where the hopeful treatment lies.  

I know there has been mention of sending me to the CC but one doc wrote back saying with my multiple symptoms and the fact I have no end all organ damage to me it sounded skeptical but with my autoimmune bloods, autoimmune episcleritis, thyroid and other inflammatory markers such a statement made me laugh and I tld the doc helping me people remain sick for years and for such a foolish statement we should think twice about going there......so now I am still making rounds in Boston but there are a couple of good docs at CC that maybe works a shot one being interested in the autoimmune piece when in comes to small fiber neuropathy.

I do wonder myself the roll of masto and T-B cell regulation.  After Castells I will mention NIH, I know I maybe able to get a few docs to help with application only thing is acceptance.  

I am fightijng METLIFE for long term diability, they do not understand I would much rather have my health then wonder what doc will dissappoint me next...  

I am seeing an applied kinisiologist as someone I know had issues with a certain med and was helped by one and now she is able to tolerate med.

NIH did the BMB and a lot of the major testing...BW did a lot of blood work and tested the prostoglandins. NIH has been able to treat us with medicines or will talk to our outside doctors and make recommendations.

We have had a love hate relationship with gastrocrom and the first couple times he was on it we weren't on it long enough. It seems to be working now (kind of) but it can take up to 2 months to take effect. The body absorbs very little so it takes time to build up.

When we went to NIH I didn't think I'd need to go to Boston...why should we go to Boston when we've got NIH here and dr Metcalfe who taught all these doctors. I'm glad we have a second set of doctors to get different opinions. Everyone is different, reacts differently, has different symptoms and in the end it's up to us as to what treatment we do. Yes getting into NIH can be hard but Dr Castells can get you in if you meet their criteria.

Thats great that you have a list of questions for her!
It sounds like you've been through a lot and it's time to get answers!!!

They are thinking that my husband has a secondary mast cell disorder caused by his over active immune system but then theres the whole genetic behind it and they aren't sure yet. Having both these issues complicates things for sure!

Before my husand became non functioning he ws always sweating...it was embarrassing and our house was always like a refrigerator. Now my husband gets cold...we used to always ask his docs about his profuse sweating and they told us it was nothing and probably from his hypothyroid...wrong!

Anyway let me know if I can help in any way and all the people on this forum have been life savers!!! Any question or weird symptom someone has experienced and they are very knowledgable!

Haha yes this year I felt like I had crash course in medicine...first it was learning the GI tract, allergies, immunology, rheumololory, urology, Hemotology, brain and metal stuff, genes, the list goes on. At times it I would be in Drs offices and I'd say I hear you speaking English but i have no idea what you're saying...when this started I didn't even know what a CBC was!

What is CU? Is that your eye condition?

I found the book "living well with autoimmune disease" by mary shamon very helpful, it was written by a layman and it was pretty easy to understand. It doesn't have masto or anything like that but encourages the patient to become empowered, how to incorporate traditional and complematary medicines & tips on staying healthy.

Thanks for the angel flint info, I'd never heard of it or even knew something like that even existed!