juliegee

Interesting, Linda Joy. So, Kounis Syndrome is ruled out- good. Who is your doc there at OSU, Linda Joy? It's great that he's aware of MCA and Kounis Syndrome, but it seems CRUEL and inhumane to make you have a reaction to measure mediators. I am soooo sorry. That being said, I think serum tryptase is only elevated in around 25% of the cases of KNOWN anaphylaxis and methylhistamine is only slightly higher, around 40%. These are in patients with DEFINITE anaphylaxis. The mediators for anaphylaxis are notoriously unreliable. Let me know if you want links to those studies. There is a new one that has been found to be much more highly correlated with anaphylaxis, it's called: carboxyeptidase. I realize that you are in Ohio now; and may be quite unstable. BUT, the two top docs in the US for MCAS are: Dr. Marianna Castells in Boston and Dr. Lawrence Afrin in Charleston. I know that either would consult with your doctors to help stabilize you. Hugs- Julie

Hi Linda Joy- Good to see you posting again. I wish it were under better circumstances You clearly had an allergic reaction. They most definitely affect the heart in a phenomenon called Kounis Sundrome. The arteries supplying blood actually vasospasm in response to mast cell degranulation. Kounis Syndrome can cause an actual myocardial infarction, but instead of t excess plaque/cholesterol clogging the arteries, a vasospasm is what causes the loss of blood to the heart. Here is a link: http://en.wikipedia.org/wiki/Kounis_syndrome Please let us know how you get along- Julie

http://web.ebscohost.com/ehost/pdfviewer/pdfviewer?sid=307421b5-dd7b-46d7-91b2-3ace306a520c%40sessionmgr12&vid=2&hid=14

Scrabble

Woo Hoo!!! Congrats

Oh come on, Claire- I wanted to think you really had an inner thug-thing going on Yep, you are right about the likelihood of MCA for the things you react to & test negative to. Some of us, like me, react negatively to everything, but will have have anaphylaxis, nonetheless. We are a bit easier to sort out. But you do demonstrate that same phenomenon. For instance, I test negative to pistachios- both in skin and RAST testing. But, I ate no food one day (just busy) until I got to car pick-up line & I ate a whole bag of pistachios, waiting for my son- by the time I got home, I was covered in full body hives and had almost no BP. It was VERY clear what I had reacted to- yet tests NEVER bear that out....hence the MCAS. So I can relate to your frustration with testing. Your doc sounds great. I am so happy that she & her office have been as helpful as they have been- a willingness to learn, understand, interact with top docs, and treat you appropriately & compassionately. YAY! Julie

Carol- I've been following you too and am soooooo encouraged that you are tolerating the allegra. Have you been able to back down on the atarax at all? No worries if you haven't; you KNOW it's all about homeostasis- tiny baby steps- you'll get there. You are moving in the right direction Yay!!! Julie

Aaron, forgive me for commenting so late- I somehow missed your post. I am over the moon about your DX. Yay!!! PLEASE share the name of your marvelous doctor who was open to all of these connections.I know that s/he can be such a help to other members here. I am thrilled that you received your DX in such record time. Helping other sufferers is ultimately the reason that so many of us post; so it's very encouraging to see the progress that you have made. Your self advocacy, research, persistence, and determination are a model to us all. I am guessing by your questions, regarding meds, that your doc is not one of the top mast cell researchers. S/he may have to work with either Dr. Marianna Castells in Boston or Dr. Lawrence Afrin in Charleston to help you find an effective regimen. Dr. Castells also does phone consults OR you may be best served by a visit to either of them. Please keep us posted on your progress. I am delighted that you have a DX firmed up, and have my fingers and toes crossed that an effective treatment plan will follow. Julie

Wow, that's the first time that I heard your whole story, Claire. Unbelievable, I am so sorry. I pray that you get hooked up with a knowledgeable doc to oversee your re-conditioning. I am convinced that will be the key to your re-gaining your health. Definitely get your epi-pen and work to figure out a rescue H-1....and ultimately a MCA regimen that stabilizes you on a day-to-day basis. I went from bed bound to running 5 miles at a shot (on a good day ) You can too. It really starts with one step, then two, then three, etc. and working your way towards health. I am most definitely still quite ill, but am fairly well stabilized with my meds, AND so much improved from where I was. So happy help is coming & that you have such a terrific support system. You also have us all cheering for you. Hugs- Julie

Hey Rich- So glad you are finding some answers. i have low IgG 1 and 3 too. From what I have read, low IgG 1 is VERY rare- yet quite a few of us have it.... That MIGHT explain your breathing issues- chronic infections etc. How low are your numbers? I think my overall IgG is lower than 500. Can't wait to hear more about your results! Julie

Wow, Jennifer- more evidence of Stewart's "low-flow" population, but Vandy seems to throw all POTS patients into that pool??? Could someone translate this for me- what us a blunted vasopressor response? How about an impaired baroreflex function? I'm guessing that this relates to renal function too- could have some helpful implications for you... Julie

YES- Great article by Dr. Afrin, my personal favorite. i wish HE were making up the diagnostic criteria for MCAS Wow, Claire- I get a better idea of your situation and see how frightening that would be. Out of curiosity, WHY were you hospitalized for so long? I was also repeatedly hospitalized throughout my life for so many weird random things (all MCA related- I learn in retrospect), but I have been remarkably stable since getting on my MCAS regimen. I bet you will be too Because you are so isolated at the moment, It is really important for you to try new meds when you are with someone, like your hubby. I might try the claritin first- as that might have the least side effects associated with it. But finding the right H-1, when you are very reactive, is just a matter of trial and error... YES, you need an epi-pen, but rescue meds are even more important. All of us "masties", have a go-to med that we quickly down BEFORE using the epi-pen. That really is the last resort... Should you need to use it, DON'T hesitate. I've only done it once & ALL of my symptoms resolved within seconds- with NO negative side effects. Good stuff when you need it. If you are alone, call 911 first tell them what you are going to do. Have a squad on the way. Chances are, they will find you well- but i just want you to be safe. Enough scary talk Think happy thoughts and play with your adorable little girl and get down to your thug music. I know better days are ahead. Hugs- Julie

(((((Claire))))) I have tried to respond several times and my very long post keeps disappearing ; I'm afraid that you will end up with the Cliff Notes's version. I know that you already KNOW this, but it certainly bears repeating. You MUST figure out a rescue med that you can safely use. If benadryl makes you feel badly, try some other H-1's, like zyrtec, allegra, or claritin. (I think CLARITIN is the one most easily tolerated by very reactive folks.) Aaron/Serbo makes a great point about heading to the ER and not checking in when you feel so badly. Just hang out (with your rescue meds and epi-pen) and watch TV. IF you needed to use them, you would be very close to help, should you need it. Your high IgE is indicative of traditional allergies. Did you recently have those tested? Do you know what you are allergic to? It could also be an indication of how reactive you are...to your traditional allergy(s.) Could you still have MCAS/MCAD? Yes. For instance, if you KNOW that you are allergic to cats (and cats only!) and you have a reaction and were NOT exposed to a cat- THAT could be an indication of overly reactive mast cells or MCAS/MCAD. Re, serum trptase & mast cell disorders... Your level must consistently be elevated to meet the criteria for mastocutosis. Here is the World Health Organization's (WHO) criteria for mastocytosis: http://www.medicalcriteria.com/criteria/hem_mastocytosis_class.htm As far as the level needed for a MCAS/MCAD DX; if only it was that easy !!! The WHO is about to come out with that criteria. Based upon the best evidence I can find (recent medical articles posted by the authors of the WHO criteria), this is what it will most likely be: 1. Episodic symptoms consistent with mast cell mediator release and affecting 2 or more organ systems, for example a. Skin: urticaria, angioedema, flushig b. Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping c. Cardiovascular: hypotensive fainting or near fainting, tachycardia (rapid heart rate) d. Respiratory: Wheezine e. Naso-ocular: redness and swelling of the conjunctiva, itching, nasal stuffiness 2. A decrease in the freuency or severity or resolution of symptoms with antimediator therapy (H1 and H2 antihistamines, antileukotriene medications (Singulair, Zyflo), or mast cell stabilizers (cromolyn, ketotifen) 3. Evidence of an increase in a urinary or blood serum marker of mast cell activation: increase of tryptase level above baseline on 2 occasions or only once if the baseline level of tryptase is 15ng/ml or higher. This is the preferred method of indicating mast cell activation. Less specific markers are 24-hour urine with elevated level of histamine metabolite or prostaglandin metabolite, PGF2. Ana mentions a serum tryptase level above .99 ng perhaps being indicative of MCAS/MCAD; I'm afraid that is unsubstantiated at this time. A knowledgeable source (that we both know) repeatedly makes this claim. This is the research supposedly backs up that claim: http://circres.ahajournals.org/content/108/11/1316.full I just don't see it here... There IS an article by Dr. Lawrence Shultz that seems to somewhat back that up, BUT he refers to a very specific type of serum tryptase, called "Mature Tryptase." (He has apparently patented that test.) Any MATURE serum tryptase above .99ng is supposedly indicative of MCAS/MCAD according to Dr. Schwartz : http://www.aebm.org/jornadas/alergia/7.-%20Immunol%20Allergy%20Clin%20NA%202006.pdf You can see that this is very complex and still evolving. I wish it were easier to understand and know that you are seeking help now. Definitely get your epi-pen, follow up with your doc, identify your allergies, avoid them( DUH!), and continue to seek an MCAS/MCAD DX if you think you meet the criteria after your testing is complete. Feel better & keep us posted on what you learn. Hugs- Julie

Sounds like she may have low flow POTS, characterized by excessive vasoconstriction. Have any of her docs ever recommended lorsartan? Might help. BTW, my son used to take that high of a dose of florinef. It works best with lots of salt (I think Mack took 6 Thermotabs a day) and lots of extra water/gatorade, etc. Also, I hope her docs are checking her potassium level. Florinef can drain it- especially at that high of a dose. Julie

(((((Jen)))))

Bren- forgive me. I wasn't trying to be mean-spirited, just sharing my experience. Reynauds CAN sometimes be quite serious especially if in indicates an underlying heart/lung/or blood clot issue. Patients actually lose their peripheral limbs from it. Your doc is just plain wrong. Don't you love how they dismiss us ??? K Mom- Duh! Of course, the pulse oximeter wont work. I often have the same problem and in severe Reynauds, it can't be used to reliably measure blood gases. BUT, I can usually find one finger or toe or even my ear lobe that will provide a reliable reading. I was just concerned that blue peripheries may be indicative of her lung issue returning... My son has that severe bradycardia & can't tolerate beta blockers either. I am afraid that the magnesium may have the same effect. Has she tried florinef to boost blood volume? Julie

Actually in Kahleigh's case it could be worrisome... It is indicating very severe vasocontriction and hypovolemia. I have the same problem, but to have the entire hand involved is VERY unusual and severe. I have been hospitalized for SEVERE Reynauds more than once. They usually want to rule out blood clots/anatomical heart issues/and ensure that the extremities won't be lost if the blood flow isn't restored. Is her blood oxygen OK as measured by a pulse oximeter? Are her symptoms worsened when her hands are blue? Is she being treated for Reynaud's, like with a beta blocker to open up and relax the blood vessels? I would consult with any doc that "gets" her bigger picture. For now, lots and lots of fluid and salt so that her hands get the message that there is enough blood to go around. Nothing that vasonstricts, like caffeine. Limit stress. I don't know her med profile, BUT magnesium (500mg) every night has been extremely helpful to me in relaxing the blood vessels. (I can't tolerate ANY beta blocker.) Let us know what you find out. Julie

Cool. Where do you get it? Sounds like it works on the limbic system??? Plain old magnesium oxolate has been nothing short of a miracle for me. I'm curious about this too. Julie

TREMENDOUS relief. Shots make me feel like Super Woman When my MCAD was really bad, I was repeatedly put on the short term prednisone packs that wean you down. They always helped...at first. Then I started to feel really bad...couldn't sleep, sweated a lot, felt like the manic side of a bi-polar swing, etc. Also, no matter how carefully I was weaned down the end was poo. I felt awful

Brianna- Let's say you have anxiety (which we know is secondary to POTS.) It is still preventing you from attending school full-time; thus you are entitled to a 504 plan. I'd say time for the legal stuff NOW. You can't waste any more time waiting for them. Here is a link to exactly what a 504 plan is & what you are entitled to: http://www.theparentaladvocate.com/what-is-a-504-plan.htm It's crystal clear that your cardiologist doesn't have a clue as to how seriously POTS can affect us or impact our lives Know we are all fighting for you. Hugs- Julie

Hi Sarah- YES, Pelvic Congestion Syndrome/PCS is linked to autonomic dysfunction. Search this site to check out previous chats. The idea is that varicose veins form in the pelvic area allowing blood to pool. Mack's doc at Hopkins is the first to make this link to autonomic dysfunction. Here is a webinar from 2010, in which he discusses PCS and more...which I think will also apply to you: http://www.potssyndrome.org/179/managing-orthostatic-intolerance/ I was inadvertently treated for this with great success. I had an embolization at age 45 for a huge uterine fibroid (10cm) which seemed to form very quickly. The idea was to fill the pelvic veins with tiny plastic pellets to block the blood flow & let the tumor die. During that procedure I learned that my pelvic veins were HUGE. I had before and after photos taken and the difference was remarkable- so was the clinical picture. My HR used to raise about 60BPM upon standing before the procedure & more like 20-25 BPM now. There is certainly something to this. Regarding your pain, I am so sorry that things are still so bad That makes me sad. I also suffered extreme daily pain- especially in response to any activity prior to starting my MCAD regimen. THAT seemed to allay the majority of my pain. As you probably know Fibromyalgia/FM & Chronic Fatigue Syndrome/CFS are closely linked to autonomic dysfunction. Many (like me) believe they are synonymous terms. A recent small study showed that all FM patients had an abnormally high level of mast cells in a skin biopsy- maybe explaining my improvement? I KNOW that you are already taking the MCAD meds.... have you ever tried a TNF inhibitor? TNF is another cytokine involved in the inflammatory process that is not addressed by your current meds. Just a thought I know you're not faking it & wish you had more improvement at this point. Hugs- Julie

Interesting. My son is DXed with NMH and CFS, not POTS- although his HR got to 140 during his TTT (an 80 BPM rise) it didn't happen until 34 min- prior to his faint. Regardless, Mack gets VERY sick when he has to intensely concentrate on his school work. For instance, following his SAT, we had to go straight to the ER. He was so faint and had an unimaginable headache. In a high school English Lit class. he had to memorize PAGES of Shakespeare to recite for a test grade. Every time he tried, he started to vomit- really. I felt like such a fool trying to explain to his school counselor that studying too hard made my child sick. You can imagine the eye rolls. This study might provide the science behind this phenomenon. It makes my heart break for all of us, but especially the kids as sooooo much is expected of them. Julie

Hi Carol- Any benefits yet? It's been a while for me, but i think I was on 20 mg. Everything Issie said is correct, BUT doxepin is taken at MUCH higher dosages to have an antidepressant benefit. I hope others chime in with their doxepin dosages. I THINK I was on 20mg, but it was years ago. I took it at night, but you may not feel the sedative effect because of the high dose of atarx that you are on. Let is know if it is helping... Julie

Whoah, LB- You DO have a lot going on Sorry. I have reactive hypoglycemia too. The way I understand it- protein is king: eggs, collage cheese, peanut better, hummus, cheese, chicken, fish, meat. Complex carbs are OK in small amounts, like brown rice, whole wheat bread or pasta, vegs. Fruit, fruit juice, and any sweet is a no-no. Limit caffeine and alcohol. If you must use a sweetener, Stevia is the best. Eat often- small meals frequently. I read an article that described our bodies as a furnace and anything sweet or white (bread, rice, pasta) as paper- just burns too quickly. Protein and complex carbs are like coal- they burn more slowly and provide more efficient fuel. Anything sweet gives your blood sugar a huge swing up- followed by the huge swing down and you know how badly that feels. Let us know if the diet helps. Julie

Thanks for bringing up this old chestnut, Rama. I had to abort last time because of the Plavix; think I'll try again Good stuff when it works.