Hello all,
I'm 29 years old w/2 small kids. My whole life has changed and I need help from anyone on here that can offer me guidance.
From September 2010 to December 2010 I lived in a house with toxic mold.  While there I started getting really sick.....hot flashes, dizziness, fatigue, depression, excess amounts of energy so high I was able to do 30 male pushups (about 20 over my normal ability).We had the house tested twice and several toxic molds were confirmed.  We moved out and the first day out of there, I was unloading the house and I collapsed but was conscious.  I couldn't get off the ground for an hour.  I chalked it up to exhaustion, stress, being dehydrated, and low blood pressure (had it for years).  The next day I was shopping and that's when I changed forever.  I got this crazy feeling like I was going to pass out.  I went and chugged orange juice thinking I had low blood sugar.  After that, I got slurred speech, involuntary muscle movements, and I acted mentally retarded in the ER for 4 hours with dystonia (ridged involuntary muscle movements).  They thought I was on drugs.  The next day in the hospital the tachycardia up to 150's started.  Shortness of breath, chest pain, etc.  No one knew what was wrong with me so I was discharged after 5 days.  I went back for another admission and 4 other visits due to near syncopal episodes.  Blood pressure changes, near passing out episodes, it was terrible.  I was bedridden and couldn't walk to even sit up in bed for a while.  I was soaking my sheets with sweat, flushing, tachycardia, low bp, high bp, orthostatic, and finally after a month of that was diagnosed with POTS/dysautonomia.  I was flushing from sunlight even just touching my skin, shortness of breath, rashes every day, diarrhea, etc, and was tested for carcinoid, pheochromocytoma, masto, all negative.  
On my history, growing up I got hives all the time.  Chronic hives into my 20's, lots of eczema, dry skin.  
I found out recently I have hashimotos, and high methylhistamines in my urine test.  I just took the prostaglandin test--no results yet.  Tryptase is normal, normal on all the IgE type tests. My AH50 is low and C4 is high.  I went on a histamine free diet and all the eczema, hives, flushing, and rashes stopped.  Lately though, my POTS has been terrible probably b/c I'm cheating on the no histamine diet.  Near syncope episodes where I get really hot all of a sudden, like I can't cool down.  I'm usually lightly active at the time and in the heat.  I get awful stomach bloating like I'm 4 months pregnant and cramps like something is eating my insides away.  Occasionally, shortness of breath where I can't read stories to my son or hold conversations.  My muscles in my legs hurt a lot and it hurts if I lay on them too long or if I have my leg or arm bent a certain way too long that hurts as well.  
Does any of this sound like MCAD?  What can I do?  I am religious about not cheating on my histamine free diet but I did lately and have been really sick because of it.  I take Midodine & a beta blocker, plus aspirin.  Won't the beta blocker and aspirin make this worse if it's MCAD?  I'm in South Florida and I have no clue where to go to get help for MCAD.  Does that slurred speech episode I had initially sound like MCAD?  I have considered doing Dr. Levine's exercise protocol study for POTS also.
THANK YOU for listening to the rant.  I have been on a huge journey for help and I appreciate anyone willing to share suggestions, similar stories, advice, etc.

Hi there!  Welcome to our home!!

Whoever ruled out "masto" was probably testing for Systemic Mastocytosis which they would have probably run ONLY the tryptase and it is now well known amongst masto doctors that a low or normal tryptase can not and will not rule out masto!!   Your doctors obviously don't know this and you are already diagnosed for MCAD with your high methylhistamine levels!!!  

So BE AT PEACE there is NO MORE LOOKING this is your diagnosis!!  

Now, the trick is, to find out WHAT FORM of mast cell disorder it is.  This is going to take some hard work and working with doctors to find these answers out.  

What we need to know is what medications you are on, where you live and what doctors you have seen so far.  We can help you and guide you.

As to your being pregnant, however, you should not and must not go increasing any medications without a doctor helping and instructing you.  I know that this may be difficult, but you need HELP because most doctors don't understand masto and they are not going to understand how to medicate you properly without harming your unborn baby.  And yet you need medication because you are obviously going through some pretty bad anaphylaxis.   So, for this you need and EXPERT and Authority and with this one I recommend two major doctors, Dr. Mariana Castells and Dr. Cem Akin who are both at Harvard, but also Dr. Luis Escribano who is in Toledo Spain.   Dr. Escribano is the greater authority in pregnant mastocytosis patients and he's been doing a study with about 100 or so pregnant women so he is the one who has the greatest experience as to medications and how to treat the women in order to help deliver the baby in safety and also how to medicate you properly.

Now, just for your peace of mind, according to Dr. Escribano, none of the women have had complications of their masto with the babies and those babies were all born healthy and normal!  So, be at peace, your child will be born just fine.  

If you will PM me, I will be glad to give you the contact information for these doctors.  If you don't want to reveal your name here, I'd appreciate your giving it to me in the PM for I will personally write to Dr. Escribano on your behalf and let him know about your situation.  He will want to work with your gynecologist so that you can be put on proper medications and so I want to ask him what his instructions are since you've not got a formal diagnosis yet.  He will know what those high histamine levels mean and will realize that in your case, you've got to have some quick help because a baby doesn't wait for diagnosis and you've got to be gotten out of danger so that you don't have more trouble.


Now, what you must do is try to totally reduce any kind of extra physical activity which is putting you on the edge.  You must keep your home as cool and comfortable as possible, for heat is a trigger and pregnancy turns us into ovens!  You can be triggering due to the extra generation of heat that your pregnancy creates.  You need to take as many naps as posslble and reduce your stress if that's at all possible with small children under foot!!   Everything you can do to treat yourself like a "queen" is necessary for just the physical demands are major triggers and once you get triggering, it can feed itself and get out of control.  

give me a PM as soon as you can, and let's see if we can get this ball on the road.

Lisa

Hi Lisa ,

Candace did the same with me when I first went there and described my bloating in the same terms

Hugs
Jose