juliegee

Carol- You are so welcome. I KNOW exactly what you mean. There is such comfort in knowing that others with your same DX have similar symptoms/oddities. When I found this group, it was almost like finding my long lost tribe. Another doc to consider, that MAY be more available, is Dr. lawrence Afrin in Charleston, SC. He and Dr. Marianna Castells are the two biggest MCAD experts in the US. Just wanted you to have a back-up. Happy & Healthier New Years to YOU! Julie

Issie- I realize that I am late answering your question and you have since failed on the lorsartan trial, but I finally had the time to dig through some old studies and found this one below. I find in very pertinent to you with your Kounis Syndrome & intermittent hypertension: http://www.fasebj.or...ct/21/6/A1253-a Angiotensin II mediated activation of cardiac mast cells. Stephen M. Biscotte , Scott P. Levick , Michelle L. Bertling , Loren G. Morgan , Joseph S. Janicki and Gregory L. Brower Cell and Developmental Biology and Anatomy, University of South Carolina, School of Medicine, Columbia, SC, 29208 ABSTRACT A local Renin Angiotensin System (RAS) acts in an autocrine/paracrine manner in the heart to induce pathological changes such as hypertrophy and fibrosis. Cardiac mast cells play an important role in regulation of the local RAS through the release of renin and chymase, enzymes capable of producing angiotensin II from angiotensinogen. Accordingly, it is plausible that angiotensin II may act via a negative feedback mechanism to regulate mast cell degranulation. In order to test this hypothesis, rat cardiac mast cells were isolated and examined for expression of AT1 and AT2 receptors by western blotting. Isolated cardiac mast cells were also treated with angiotensin II and degranulation was assessed by ELISA measurement of histamine release. Normal cardiac mast cells express both the AT1 and AT2 receptors. Incubation with angiotensin II at concentrations of 1 x 10–10 and 1 x 10–6 induced a concentration dependent histamine release from cardiac mast cells of 23.7 ± 8.2 % and 32.8 ± 27.4 %, respectively. These findings indicate that angiotensin II is a potent secretagogue causing mast cell degranulation. This angiotensin II mediated activation of mast cells may constitute a positive feedback mechanism contributing to the maintenance of the sustained elevations in tissue levels of angiotensin II seen in hypertension.

Yes, Carol- me too with the throat thing. When my MCAD stuff flares, the throat stuff is the most disconcerting. That is more evidence (to me) that you are not adequately treated. Once you figure out a more effective regimen- THAT will get better. It has for me. I have my fingers (and toes!) crossed that this new doc will be helpful. Issie, I guess just drink more water, G-2. I don't really notice additional dehydration, mouth dryness, etc. that many report with H-1's- not sure why. (BTW, better late than never, but I will post a study- later today- that I dug up correlating high angiotensin II to mast cells, etc....even though the lorsartan didn't work for you ) I also learned from the TMS audio tapes that researchers are really in the infancy of studying mast cells. Back in the early 90's when mastocytosis was first identified by WHO (World Health Organization,) it was all lumped into one category. A patient either had mastocytosis or didn't. Now, they have identified many different phenotypes of mastocytosis- systemic, cutaneous, indolent, etc. Well, the same appears to be true for MCAD. They are just now realizing that there are many phenotypes of this as well. What works for me, may not work for another MCAD patients because we may have different phenotypes of the same disorder. Yes, DSY! Avoiding a trigger, if you can identify it, will have the same effect as treating it (after-the-fact) with the meds. "Allergic" reactions most definitely can cause a pain response. Docs are even starting to treat RA patients with antihistamines... Interesting stuff.

I was listening to some audio recordings of The Mastocytosis Society's 2011 Conference, now available on YouTube: Some of the top mast cell docs were talking to MCAD patients and happened to comment that a small, but very consistent, study had been undertaken testing skin biopsies of fibromyalgia patients. Lo and behold, they were VERY high in mast cells compared to the control group. This confirms my experience. I had EVERY symptom of fibromyalgia BEFORE beginning my MCAD med regimen. I suffered from debilitating chronic every day pain- my head, neck and shoulders were the worst; BUT post-workout pain was indescribable. I am talking minimal work-outs. I remember playing catch with my son and being in such extreme pain for three days afterwards that I needed narcotics. Since taking my MCAD meds, I have NO pain. It is gone I can walk, run, do push-ups, etc. I am sometimes mildly sore, BUT nothing like before I started my med regimen. I really think there is something to this. More studies are sure to follow.

To be honest, Bruc, so much of this is way over my head. But, it seems to me from perusing through your DX; that you DO have an autonomic dysfunction. They found irregularities with your sudomotor, cardiovagal, and adrenergic function. I'm guessing that your testing was at Mayo- right? Did they run the test for the autoimmune ganglionic antibodies? The most current testing is revealing that more of us suffer from that than originally thought AND there is treatment for that etiology- IVIG infusions. How did your docs describe your test results to you? I agree that they seem confusing & don't point to a clear causal factor- mine don't either...just a lot of rare abnormalities, none related to the other supposedly... One thing that stuck out to me as I researched your test results was DIABETES. Every abnormal test result you have is usually secondary to diabetes. I'm sure you've explored that possibility already . The same was true for my then 12 year old son, when his GI stuff was so uncontrolled. Hopkins treated BOTH his autonomic dysfunction & small bowel dysmotility before he improved. His DX was all nuerogenic (per TTT & antroduodenal manometry) and he also suffers from severe and recurrent SIBOs- not exclusive to myopathy. Are you able to eat now? What are your worst symptoms? How current is your testing. I ask because testing gets so much better every year. Below is just a bunch of links that describe parts of your DX. Some are pretty good. I hope someone else chimes in with better answers. Happy & Healthier New Years to you! Julie ________________________________________________________________________________ "Conclusion: Length dependent postganglionic sudomotor neuropathy associated with cardiovagal dysfunction, borderline vasomotor adrenergic dysfunction." http://www.mayoclinic.org/medicalprofs/autonomic-testing-applications.html Length Dependent Postganglionic Sudomotor Neuropathy: http://www.medscape.com/viewarticle/705183_6 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048308/ Cardiovagal Dysfunction: http://www.ccjm.org/content/76/Suppl_2/S37.full Vasomotor Adrenergic Dysfunction : http://www.bcbsm.com/mprApp/MedicalPolicyDocument?fileId=72106

I guess what I'm getting at....I wonder of your allergy symptoms might be greatly improved by NOT being on the BB? That was true for me. The only time I've ever had anaphylactoid episodes is when I was on a BB. THIS might be something to discuss with your doc. Often, our tachy is a compensatory mechanism to make up for leaky vasculature caused by allergic reactions. Masking that can worsen everything- better to address the underlying issue. Just a thought

Maybe I'm wrong, but I could have sworn that my Mayo allergist says that BB's are contraindicated for ALL patients with allergies and asthma (regardless of cause- IGE or MCA) due to amplification of symptoms...

Not sure about that, Katie. Maybe it's just with mast cell disorders, but I was under the impression that beta blockers (and even calcium channel blockers to a lesser extent) will worsen allergies and asthma. My MCAD was GREATLY worsened with a BB, and even with a calcium channel blocker. I did have an anaphylactoid episode while on a BB and my epi-pen only worked for a short time. I had to go to the ER to get stabilized. Julie

Interesting question, Bruc. As I recall you have had very extensive GI testing that revealed both nerve and muscle damage to your GI tract- right? Most of us only have nerve damage, apparently a neuropathy secondary to the autonomic dysfunction... WHAT do your docs say can cause muscle damage to the GI tract? That may provide some clues. Re, the autonomic dysfunction, I am guessing that you had a TTT. If so, where? How long did it last? I ask because so many folks here had what I consider mini TTT's that often fail to reveal the true autonomic dysfunction. At Hopkins, they have the patient lie down for 10 mins. before taking baseline BP and HR. Then they tilt the table almost upright for a full 45 mins. IF the patient hasn't experienced any abnormalities, they inject something to simulate mild stress and begin another FULL 45 mins. This is the testing that my son had & NEEDED. He was VERY symptomatic during the entire test- sweating, nauseous, anxious- BUT his HR and BP were perfectly normal until his BP dropped so low as to be immeasurable and he barfed (with the antroduodenal manometry probes in place -a Hopkins first!) This occurred at 35 mins!!! Had he had a 10 min. "Vandy Special," they would have missed the true underlying cause of most of his symptoms. BTW, his HR increased to 140BPM right before the faint/barf- this is a delayed form of POTS in addition to the NMH. I'd love to hear about your TTT and any other autonomic testing that you've had that has revealed nothing abnormal. I wonder if your testing failed to reveal an underlying autonomic dysfunction.

I hope that's a GOOD sign, Lissy. Keep us updated after you see the cardio. Hugs- Julie

You guys know I'm going to chime in with a big "ME TOO!" I have to laugh because Janie and I seem to have MANY of the same symptoms. Carol, you and I have many similarities too- but yours have been so uncontrolled. I hope that is changing and things are beginning to stabilize for you too. I do a lot of commercial decorating and just from making bows for Christmas wreaths, I had several spots on my fingers that semi-permanently indented, chunks of my fingertips were missing, and they bled. (They have since healed with trapped blood blisters where the chunks were ) The skin is VERY thick on my fingertips and I constantly have to put layers and layers of lotion on my hands. They are very red, either extremely cold or very hot, swollen, engorged with blood. The latter is less common. This has to be a part of our disease process...whatever that may be??? Julie

Great news about your increased iron, Jen- YAY!!!! I bet the cold sores are just a temporary reaction. Hope so. I have a general question for those DXed with the autoimmune form of POTS- are your immunoglobulins also low? In other words, are you also immunodeficient? Thanks- Julie

I'm always told my stuff is autoimmune, yet my ANA is always normal...

Wow Maiysa- So sorry that this happened to you- EVERYTHING: the reaction & the doc's bizarre reaction Your account is written so well. I suggest copying it to a word document & presenting it to the owner of the clinic. Just because they refunded your money; does NOT mean that they fulfilled their obligation to you. Unfortunately, MANY with mast cell disorders have a very difficult time getting the proper testing done...this is part of the reason that suspected MCAD patients are currently in a very vulnerable & dangerous situation. The World health Organization has NOT come up with MCAD diagnostic criteria yet (it is expected VERY soon), but a new consensus proposal written by Dr. Valent gives us a preview of what that criteria will probably be: http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ArtikelNr=328760&Ausgabe=255627&ProduktNr=224161 The problems are as follows: -Not every hospital has the capacity to do the proper testing -Most ER docs will refuse to do the testing once they determine you are stable. You are NOT alone. At that point, they have fulfilled their contract with you the patient. (In other words, their job isn't to help DX you). -Following an anaphylactic episode, most patients are too sick to get to an ER or laboratory. Compounding the problem, the way that the consensus proposal is currently written, it is NO longer enough to have elevated baseline serum tryptase, prostaglandin, D-2, etc. You MUST demonstrate a significant RISE from baseline to satisfy the proposed criteria. SAD

Hey Lex- Not sure where you are, but I can highly recommend Dr. Fortunato to help you sort out the GI stuff. I think he's at Duke in NC. Tell me what you problems are and I will share what we learned at Hopkins from he & Dr. Anil Darbari- GI motility specialist. BTW, you are SO right that most GI's haven't got a clue as to how this relates to our autonomic dysfunction. The symptoms are so severe & finding help is almost impossible. GI stuff was my son's WORST symptom by far. I feel for you. Julie

Katie- Perfect. With current allergy testing, this doc is working off of the best information. Perhaps your IgE wasn't elevated because (aside from the specific minute skin reactions) you weren't having a major reaction to anything. I think you can very safely rest assured that you DO have traditional allergies. They are identified. The treatment he suggested is perfect- (H-1 & H-2.) The other thing you can do is work hard to avoid triggers. The tricky part for you is the immunotherapy...shots. With this doctor, I would try them. He knows you had a bad reaction in the past. He is aware of the BB's. As long as he gives you minute amounts & you stay in the office LONGER than recommended, I think it is worth a try. YOU CAN IMPROVE. That is huge. Getting this under control will improve your POTS. Stop worrying about MCAD. You have the exact same symptoms, connections to POTS, etc. as we do- yours is just mediated by traditional(IgE)allergies. You should feel validated. You are in great hands AND you have a chance to improve...YAY! Julie

Hi Katie- He really does sound like a great doc- you are very lucky. Very open-minded. He is right. Mast cells are very much involved in all allergies. It looks like he DXed you with traditional IgE mediated allergies. I have a question. Did he do any allergy testing? Is he relying on old allergy testing- how old? I notice that your IgE is NOT elevated...hmmmm. Julie

Hey Turvy- Just a thought if you aren't 100% ready to give up on the field of psychology... many with a BS in psychology go on to get a master's degree in social work. An MSW is a terminal practice degree, unlike the field of psychology, where one needs a Ph.D or Pys.D in order to work clinically with patients. MSW's do the same clinical work & can directly bill insurance, etc. It's a quicker (and cheaper) way to get where you ultimately may want to go. Best of luck deciding & funding. Pursue the diversity scholarship- almost every school offers them. You certainly qualify. Julie

Very Cool- I glanced through the Table of Contents and saw that Dr. John Fortunato, wrote a chapter on the GI issues that often accompany POTS. He is awesome. Mack saw him at Hopkins seven years ago. He was a fellow for Dr. Anil Darbari, a pediatric GI motility specialist, at that time. They were among the first to connect the slow GI tract with dysautonomia. Last I heard, Dr. Fortunato was at Duke if anyone needs a great GI doc who connects the dots with dysautonomia. Thanks for sharing, Naomi! Julie

Hi Bananas- I hate to sound like a downer, but your gastroparesis may never be totally taken care of... it's one of those things that wax and wane for most of us. It sounds like you are doing better? If so, what a blessing. YAY!!! I know how much I appreciated being able to eat again Is avoiding dairy helping? If so, I'd be very cautious about adding it back into your diet. I guess you could always try it and carefully note your reaction to it. Be aware that your symptoms could go beyond GI stuff. Dr. Rowe at Hopkins insists that it will actually worsen OI. My son is a college student. Pizza is constantly available to him. He does indulge once in a while fully knowing he has to pay the price of worsened symptoms- everything: GI stuff, OI, lightheaded, more fatigue etc. If you decide to try dairy, do so at a time you could crash if you had to i.e. not before a final exam Let us know how it goes. Hugs- Julie

Alicia- So many here have come to love you & want to offer you support. Living with this illness is tough and very hard on relationships. Let me make an observation: the way you are handling your guests (friends and family) is the SAME way you are handling your hubby. You are NOT speaking up for yourself, you are subsequently being walked on , and you feel ANGRY about it. I get it. You are worth so much more than that. You deserve to feel respected, loved, and cherished- really. You can't change anyone, but yourself. I suspect that you need to be a lot more assertive, not aggressive, in communicating with everyone. By doing so, you will begin getting your needs met. We teach people how to treat us. I like Jana's suggestion about seeing someone professionally. The support will be invaluable & the help in learning to communicate more assertively can truly change your life. Sending gentle hugs your way- Julie

Alicia- You deserve to be loved & cherished. It doesn't sound like you are feeling that way That makes me sad. I am guessing that your rage comes from the fact that your husband doesn't automatically KNOW how hard you are working- that you are giving every ounce of strength that you have. When you've been married for a long time, it's easy to assume that your spouse is clairvoyant and that he already KNOWS how you are feeling & what you would like him to do. It also sounds like the workload isn't split evenly- sounds like you are doing way more- and you are the one who is sick. I'd be angry too. We KNOW that men are very fragile maybe try approaching him a little differently. Search your memory banks. Try to remember a time that he actually did something that helped you. Then, during a time that you are getting along, and you are not angry, remind him of that. "I LOVED when you emptied the dishwasher last week. Because of my wacky illness, I am so exhausted when I get home from work. What a treat to have my workload lightened." Tell him how bad you feel. Tell him exactly HOW he can help you- but do it nicely, not angrily. Remember the old adage about catching more flies with honey? Acid is very corrosive, but it only burns it's container. Your rage is hurting you and you know it. You have a right to feel slighted, hurt & angry. Try approaching your hubby differently/sweetly (reverse psychology) and see if that makes a difference. If not, consider finding a helping professional that you can talk with to help you deal with your anger. I'm so sorry that you have to deal with this on top of your illness. Hugs- Julie

I have a love/hate affair with the wicked brew The long and short of it, I LOVE it when I can tolerate it. When my MCAD was out of control, even a sip of anything caffeinated, would send my heart into an SVT. I had about a year or so where I was forced to totally stop all caffeine. I have gingerly re-tried it and LOVE it. I can't start my morning without a nice cup. The additional vasoconstriction is both good and bad for me- helps with pooling and my low BP, but it can hurt my reynauds. Moderation & a medium strength, as opposed to the extra bold favored by my hubby, are key.

I agree with your doc that some of your symptoms could be caused by a drop in BP. I've had that happen at night (once in the hospital- freaked out the nurses ) and uncontrollable shivering follows for me. The pain accompanying this is more inexplicable & concerning. Many of us get a "coat hanger-type" pain with our POTS, where our necks and shoulders ache miserably...but this sounds different and it occurs WITH the shivering. I don't mean to be an alarmist, BUT with your port- you need to take this symptom very seriously & not let your doc brush it off. That shivering (and drop in BP?) COULD be a sign of sepsis. Especially if this happens more frequently; take it very seriously. A simple blood test should reveal any underlying infection. Sepsis can "simmer" for a while & flare when your are weakened, very tired, etc. Hope all is well & you figure it out. Julie

Maiysa- You CAN have both traditional allergies and MCAD, just a bit more difficult to tease out. Do you know what your IgE number is? That's a blood test that indicates your exposure to allergens. A high number usually indicates that you have many traditional allergies. Getting current allergy testing (if you haven't done it in several years) might be a good idea- both skin testing and bloods (RAST) for known allergens would be very telling. For instance, if your testing indicates you are allergic to peanuts only and you have a reaction & have NOT been exposed to peanuts for a long time- MCAD should be considered. And, YES, all women masties will testify that our cycle makes everything MUCH worse. I had a uterine embolization that pushed me into early menopause- I use a hormone patch now AND have never felt better. So sorry you are dealing with all of this. Hugs- Julie