Hi there,

I have been following this forum for the last few months whilst undergoing testing for an illness that I have been suffering from for the last 12 months.

I have had many tests over the last 6 months and seen many specialists however I keep hitting brick walls. From what I have read on here I am not the only one

I would be really appreciative if someone on here could please look at some of my test results and provide an insight to their thoughts. I am unsure what you will need as far as blood test, however I will give a bit of info now and I can get more info if needed.

I have had a skin rash for 12 months all over my body presenting like hives. I suffer from Headaches, light headedness, fatigue, bone pain, joint pain, swelling, vomiting, stomach pain, muscle cramps. minor occasional bruising, frequent bowel movements...

Current Meds are Zyrtec morning and Night, Zantac 300mg morning and night, Vitamin D and Calcium supps 1 per day, Micardis plus for Hypertension, undergoing uv treatment 3 times a week for the last 3 months.

I am currently seeing a dermatologist who has been getting some things moving for me however I am unsure about the direction being taken.

I had a skin biopsy done in October last year, results are:
Multiple levels have been examined. There show hyperkeratosis and slight spongiosos. Papillary dermal oedema is present. There is telangiectasia. No vasculitis is seen. There is superficial perivascular lymphocytic infiltrate with intermingled mast cells and a rare eosinophil.
Mast cells stain shows this cell type to be increases on both biopsies although the cells have degranulated. This raises the possibility of Urticaris Pigmentosa but is not definitely diagnostic for the latter.

I then had 24 hour urine histamine test..
Histamine Range(0.0-0.8) - my reading is 1.2
1-methyl hist. Range(0.0-1.5) - my reading 1.7

At this stage I was informed I Have Masto UP however need to find out if it is systemic or not by further testing...

I went on to see a rheumatologist - refered me to have abdominal ultrasound (this will be done latter in the week) and usual bloods however she told me she could not help me.

Now I am also seeing an Allergen Specialist - this blood work has come back with the following...
ESR Range(1-20) my reading 26
hemaglobin, pcv, rbc, mcv, mch, mchc, rdw, platelets, white cells, meutrophils, lymphocytes, monocytes, eosinophils, basophils all within normal ranges.
Anti thyroglobulin ab Range(<4.0) my reading 85
Anti tpo antibodies Range (<9) my reading 84
TSH range(0.35 - 4.9) my reading 1.21
Tryptase Range(0.0-15) my reading 9.6

The allergen Spec told me he does not beleive it is Masto and feels it is "Self Auto Immune disease" however he is unsure as to why I am having all the other symptoms...

I am booked in to see the Masto researcher at the Royal melbourne (I am in Australia) in April. That is another 3 months away in the meantime I am getting worse day by day and just want answers now...

Sorry for this being so long winded but I have just about had enough.. Please provide me with your thoughts and any avenues you think I should try.

Thank you
Tracey

Tracey, I can't wait for you to see the masto specialist, Lisa and Ramona will be on here with intelligent medication recommendations, in my opinion you need more antihistimine/ mast cell stabilizer type of things. There is a slew of different ones we all take depending upon our systems, we all tolerate things differently.  I think a mast cell disorder is most likely, it is sooooo frustrating when a "specialist" actually tells you they don't believe it to be so because they've not looked into the disease themselves! I know ketotifen I believe is available on your end? You may be able to push the current physicians envelope a bit and get him to prescribe it for you as a trial to see if there is improvement.  Check out this link on the forum different medicines are discussed, possibly there is something over the counter you can add to see if it helps http://mastcelldisorders.wallack.us/yabb/YaBB.pl?board=Medicines
My next suggestion is a biggie and if you haven't done it, you are going to make an angry face.... Have you possibly eliminated some foods to see if they are contributing. Gluten/ Wheat as #1,  If your diet is not that "pure" and you have a lot of foods with "multiple ingredients, possibly just start with "cleaning up your diet" only foods that are pure, where you are very very aware of each and every ingredient going into your mouth, from there you will begin to notice, hmmm that didn't go so well, you can easily suspect a prior meal to the one that is bothering you. But starting with a "clean diet" is one way before really eliminating some things, if you already eat pretty darn clean, now I'd consider eliminating possibly, wheat/gluten, dairy, nuts/seeds, egg, soy for a bit then slowly reintroduce once you've been off it for a bout 6 weeks one item at a time and wait a week or so in between products. It is a slow frustrating process but can help greatly. Can you get allegra (fexofenadine) there ? Possibly that is one you could add? Quite a few of us with serious gastrointestinal issues have noticed a huge difference with it. This is too much information, however allegra was the first time my itestines calmed down in probably 6 years of continuous movement, I never had movements that were "formed" always diahrreah. Don't get me wrong I still go a lot compared to the "normal" person, they'd freak out, but as far as I'm concerned my life has changed! Food elimination for me also has been big, but by itself without the allergra I was still a mess. Another idea for an experiment is at night when you are not operating machinery take two dye free benadryl if you are suffering from the nausea/ stomach pains and see if it helps....... that will be a huge clue. Some on here can use the liquid childrens form, I cannot it is full of stuff, flavorings, preservatives etc. Also be very aware of each medication you try, the brands have very different ingredients, I tolerate teva's fexofenadine, however another brand made me throw up sick, severe diahrreah etc. It was awful, so had I tried that brand I would have thought I couldn't take fexofenadine! Lucky for me the first brand of that I tried worked.  Rupatadine ( Rupafin) was a drug that Dr Theo loves that is not available in the states but is in Central Americas, Lat Am and Europe, so possibly you can get it? I'd love to try it! He likes it better than Ketotofin. Ok gotta run, please excuse my horrible spelling/grammar today, I'm throwing out a bunch of ideas very quickly before I have to run!
Sandi

Thank you ladies for your time and effort to try and explain this for me and give me some suggestions to try. I really do appreciate it, thank you.

I have had blood work done to check my gluten tolerance and all came back clear... does this now rule me out of any gluten intolerance or is it still an elimination process that I should be physically trying to rule out?

I had tried Allegra (known in Australia as Telfast) when all the symptoms began, however it seems to loose its effectiveness after 2 or 3 weeks. I have not tried it in coordination with Zyrtec as yet so that is definitely what I will be trying over the next month at least. Thank you for the suggestion.

I will be calling in to see my GP within the next fortnight and will see if I can get a prescription for Ketotifin...I am ready to try anything!!!

As far as diet goes I try my best.... I think that tomato may be one of the ones that can trigger me but am so unsure. I have tried to pay attention to this a few times, however there has only been 3 days in the last 12 months that I have not had symptoms such as hives at the very least. I have tried all different things in the environment around me like cleaning products, perfume, washing powder bedding etc etc and this didn't bring any answers. Think maybe its boiled rice and chicken for a while!!!

I am very Kean to know more about Rupatadine. I don't think its in Australia from what I have just researched. Can anyone confirm this or provide me with a similar alternative?

Also Singulair... I cant find it in Australia, there must be something else over here that I can get my hands on.  I would love my GP to direct me but he admits he know nothing about Masto...

Thanks for your support guys
Tracey