juliegee

Interesting. So many of us get the "endothelial inflammation" DX via different channels. For me, it was from my rheumy based on a bad echo (diastolic dysfunction) and severe reynaud's. I have endless problems with my SI joints too- they pop out frequently. And, same with me re. caffeine. When my symptoms flare- forget about it. Definitely something there, obviously connected to your POTS. maybe search endothelial inflammation here. I know there's been lots posted about it.

Hi Petunia's Mom- For GERD, Mack takes nexium in the AM and ranitidine in the PM. For his prokinetic, he takes liquid erythromycin, called Ery-Ped, 800mg. It is usally pink, bubble gum flavored, but his latest batch is banana flavored. He takes a tiny dose, 14/ to 1/2 tsp before meals. He has experiemnted and found that less is more when it comes to a prokinetic. It is supposed to very slightly irritate the GI tract into emptying more quickly. BTW, he also takes florinef, thermotabs, and fluid loads constantly. ALL of this has helped the nausea. Yeah, finding a pharmacy that carries the erythromycin is hard, BUT any pharmacy can order the Ery-Ped. It s the last one left I think. Mack started on reglan- did your daughter also? WORST drug ever. He's never tried domperidone, but we do have it in the house in the event that the Ery-Ped stops working. It is a shame that so few meds are available for such a disabling illness Hope some of this helps your daughter. It is heartbreaking to see your child suffer. Hugs- Julie

Carol- PLEASE tell me things are calming down. IF not, take a good look at when the numbness waxes and wanes and what you just ingested prior to the waxing. There's a strong chance that a food or med you are taking is causing this symptom. You know we can react to something that we were previously tolerating- at any time . I really hope things are letting up. I really do know how frightening this is for you. Your doc sound FABULOUS, just perfect. I don't see any reason for you to have to travel. She's treating you very appropriately, is in touch with all the latest research, and researchers. What a gem. I really think that doxepin is what will turn things around for you. It is a super potent H-1. It made me feel VERY tired. I took it at night obviously, but the next day I still felt a little drugged up- a bit complacent. I didn't care, THAT was better than daily fighting for my life. It also made me gain weight. I was so hungry on it. I just wanted to warn you about all of that up front. You may have none of those negatives as you are switching from such a high dose of atarax. As far as when to begin your urine testing- can't guess that it really matters as it's a 24 hour test and you are so symptomatic. You will most certainly catch a mediator IF it is there & processed properly. I can't wait to see if any of the new meds will help. As you begin trialing them, let us know. Hugs- Julie

Ditto!!!

Carol- I am so sorry. I KNOW how scary this is. First of all, to reassure you, I had facial numbness for days/weeks before I realized what was going on. Don't worry about the length of time, but rather the severity of your symptoms. The one and only time I ever used my epi was when I had such severe tachy that I KNEW I was going to die. Right before lost consciousness, my husband stuck my thigh and all of my symptoms stopped. I also went to the ER one time when my throat persistently tightened and my eyes turned bright red. Curiously, they gave me a steroid shot and wanted me to follow up with my allergist the next day. And YES, I have taken steroids for allergic reactions. They were most definitely helpful in breaking the anaphylaxis loop. It seems to me, like you are experiencing chronic low-grade anaphylaxis, that waxes and wanes throughout the day. I had this for years. Doxepin and very short term steroids broke that cycle for me. I really think you need to consider them... I want to hear about the new doc when you have a chance & feel well enough to post. Try to relax. Stress will worsen mast cell degranulation. During the worst of my craziness, I did a lot of praying and meditating. It helps calm the mind. Hugs- Julie

Rama- Yeah, the GI stuff, like "D" and even vomiting can occur with anaphylaxis. Sometimes THAT is the only symptom. Worsened POTS is suggestive of "chronic low-grade anaphylaxis." In a full-blown episode, for me, my tachy just goes crazy out of control until I almost lose consciousness, no matter what my posture. In other words, being supine doesn't stop it. Have you tried a benadryl yet? Sometimes the way you respond to that helps figure out if it is an "allergic" reaction. Julie

Oh, I thought of one other thing to add. I know you will get things under control soon, but until you are feeling more stable, I thought I'd pass along some advice my Mayo-trained allergist gave to me when I was as symptomatic as you... and afraid to use my epi-pen. He would tell me to go to the the ER and sit there and watch TV, not sign in, just chill and observe whether or not my symptoms worsened or improved. I did it a few times, clutching my epi-pen, and I did feel reassured that I was at least WHERE I needed to be IF I had to use my epi and had a bad reaction to that. Kind of pathetic, I know, but helpful nonetheless. The first time I had to use it was at home and my husband, thankfully, was with me. BTW, it stopped all symptoms Feel better- Julie

Hi Carol- YES, I meant to respond to this earlier. I also get the weird facial numbness- exactly like I had gotten a novocaine shot. The last time it happened to me was after trialing a BB (again- when will I learn?) for severe Reynauds. The bottom part of my face went numb- chin, then mouth, finally tongue, throat- that's when I realized it was anaphylaxis. This is a symptom common among sufferers, but rarely mentioned in the medical literature As far as one-sided symptoms- my left arm, jaw, etc, used to get numb before I was DXed. My neurologist at the time called it a migraine aura. In retrospect, it was some sort of "allergic" reaction. With all of these weird symptoms, I have run to the mirror to smile more than once to be sure I'm not having a stroke. The fact that yours resolves with antihistamines is very telling. Too bad about not getting blood work done- I have the same problem. I fall asleep (or am otherwise too out-of-it to drive) afterwards during the "magic hour" when the mediators are supposedly measurable. Apparently, antihistamines will not affect the test results. Tell us about your appointment with the new allergist. Any luck??? Julie

Hi TCP- Yes this constellation is often seen together, but I think the POTS, in many cases, is pretty much synonymous with CFS/ME. The MCS and MCA affects a subset of this population and is probably the result of some assault (or a different expression of an assault) on the immune system. Many docs now believe that POTS is a symptoms of MCS/MCA... It gets pretty confusing Julie

Geez, I remember when my colon was acting like that. It was awful as you well know Taking such large doses of Miralax nauseates me, I will keep your Nulytely trick in mind. I probably wouldn't do the laparatomy either after you described the risks... WHY are you on doxepin? That is a med commonly used in mast cell disorders. Don't worry about adding an H-1- you definitely have that covered. When my MCA was really bad, I was on that too. I've ratcheted it down to atarax in the PM now. If you want to add an H-2, just try zantac/ranitidine- I take it out of necessity to treat my GERD (also mast cell mediated.) But, I agree- don't add the ranitidine and Ery-ped at the same time so you can gauge benefits and side effects independently. Are you taking any GI prokinetic now? If Ery-Ped is your only, be sure to start with a super low dose. All GI docs/motility specialists prescribe wacky high doses. My son is 165 lbs, 6'2" and he only needs 1/4 tsp of the 800 mg liquid twice a day. You probably know that it works by SLIGHTLY irritating the GI trac into emptying more quickly. IF you overly irritate things, it will defeat the purpose. So weird about the mastocytosis connection in your family. Really makes me wonder about MCA for you. The medical literature claims that masto is not genetic, BUT all sufferers have multiple family members affected. Published medical studies are not keeping pace with reality- another group completely under-served by the medical community Please let us know if any of the meds help or if you learn anything new. Fingers (and toes!) crossed that you see improvement. Julie

Maybe not ALL of the time? This may be a dynamic process with constant fluctuations making it difficult to make these generalizations... Could explain why some studies show excess NO and some studies NO deficiency; both in POTS and MCA patients... Everything I read talks about the importance of a balance between the renin system, norephinepherine, angiotensin II, etc. YOU (and many of us) are clearly out of balance Some pathway is disrupted somewhere.

Yeah, Issie- I realized that conundrum too. I think we are oversimplifying it. The most important thing, at this point, is to follow the clinical picture. It made you feel worse... At least, you gave it a try. Probably means that you don't have low flow POTS. I would write down the dates & dosages- any benefits or side effects and keep that information the next time a doc recommends an angiotensin II inhibitor. Sorry I'm not more help. Julie

Really??? Dr. Darbari making the MCAD connection? Wow, he wasn't back when my son saw him 6-7 years ago. BUT, coincidentally, THAT that is the other thing I wanted to bring up. Now that docs have correlated dysautonomia & GI motility, it is extremely important to figure out the underlying cause of the dysautonomia....more and more docs are learning that mast cells, indeed, are the real trigger- causing BOTH the dysautonomia & GI motility issues. Here is a great artcle: http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm I think I can recommend Dr. Darbari even more highly now As a matter of fact, my son needs to see him again for a tune-up. Keep us posted on what you learn- Julie

KC Mom- Forgive me for not responding sooner. i had seen your post, but got sidetracked... Is your son already DXed with some sort of dysautonomia? If so, I think I may have some helpful information. Your son's symptoms sound IDENTICAL to my son's when he was 12 y/o. My son had lost so much weight. He was 5'8" and growing and didn't even weigh 100lbs. Every time he tried to eat, he would become very nauseous and would ultimately vomit. He was finally DXed at Johns Hopkins by a pediatric GI motility specialist, named Anil Darbari- who is a pioneer in connecting GI motility issues with dysautonomia. Dysautonomia very often causes disruptions in GI motility, usually slowed....causing disabling symptoms. First, shame on your son's doc for not getting him to a GI sooner . That being said, I am fairly certain that a GI would be helpful ONLY in a very limited way. S/he will do an endoscopy, maybe colonoscopy, and perhaps order a gastric emptying study/GES. They will rule out anatomical problems and might be able to show gastroparesis with the GES. If your son's GES is normal- my son's was- do not lose hope that this is a motility issue. A GES is a very non-standardized test that simply delivers a snapshot of how your son's tum is behaving at that moment. It is very rudimentary & not definitive in DXing a motility disorder. My guess is that your son will need to see a pediatric GI motility specialist- one who gets the connection to dysautonomia. I HIGHLY recommend Dr. Darbari. Another great option if you are in the southeastern US is Dr. John Fortunato at Duke. He was a fellow at Hopkins working with Dr. Darbari when my son was seen. He's since written extensively on the connection between dysautonomia & GI motility. Keep in mind, there are ONLY a handful of these specialists in the country so travel will be necessary. At Hopkins my son did a specialized GI motility test called an atroduodenal manometry. This was a 24 hour test, where they placed probes through out his GI tract- in his esophagus, tum, and small intestine. They go through the nose & are placed under general anesthesia. The patient is encouraged to eat normally & keep a record of what he is doing throughout his stay. A specialized tech will later painstakingly read the pressures (note activity- like eating a snack, doing the TTT, etc.) and determine whether or not there is a dysfunction in the peristaltic waves- whether they are caused by a neuropathy or myopathy, etc. My son was ultimately DXed with Neurally Mediated Hypotension/NMH that apparently led to his small bowel dysmotility. He fainted on the TTT, right after he barfed. He said that the test perfectly simulated every day life for him. His treatment involves strong GERD meds, a GI prokinetic to improve motility, and anti-nausea meds as needed. He is on a gastroparesis diet- low fat, low fiber: lean meats (chicken, fish, turkey, eggs), mushy vegs (baby food is great!), and white everything (bread, potatoes, rice, pasta, etc.) Non-dairy is very important as milk protein is very hard to digest when the tum is this disabled AND many of these kids are found to have a hypersensitivity to it. We use Rice Dream in lieu of milk and Smart Balance in lieu of butter. Rice dream and frozen fruit make an awesome smoothie. I have sooooo much more information to share, but don't want to overwhelm you. Try the diet while he waits for all of these appts. My son's DX took about a year and a good GI should try imperically try the meds to see if they help. My son was already on many of the right meds before Hopkins did the extensive testing. Lastly, my heart breaks for you. It is so hard to see your sweet boy suffer and become more sick day-by-day at a time when his peers are thriving and becoming more independent. I remember this period all too well and feel certain that you will find help. You are a wonderful Mom to be seeking answers. Better Days Ahead- Julie

I think the nitroglycerin helped because your high levels of Angiotensin II were causing mast cell degranulation, which in turn caused your coronary arteries to spasm shut (Kounis Syndrome.) I don't understand how NO plays into this either....other than the fact that NO, angiotensin II must be in balance...

Serbo- I am dying to see that paper connecting POTS, EDS III and mast cell disorders. My PM is available. Hope you are feeling better since your reaction. Take Care- Julie

Issie- The complexity of your question is really above my addled brain, BUT I will give it a try First of all, I have never totally bought your supposition that us masties are deficient in NO. In fact, I think the opposite is most likely true. (I know studies have proven it both ways- same for POTS too ) Lorsartan should have opposed excessive angiotensin II. Excessive Angiotensin II INCREASES norepinepherine, rather than keeps it in check- all contributing to hypertension. In other words, your excessive norepinepherine is indicative of high Angiotensin II. If my hypothesis about too much NO is true; Lorsartan could have hurt you as it INCREASES NO production, which may have already been too high. THAT may have been why your trial wasn't successful- does that make sense? This us very complex and way above my pay grade . From what I can glean, the most important thing is keeping NO and angiotensin II in balance. I think we are both oversimplifying the process. I admire you for thinking outside of the box and for taking responsibility of your health. I'm sorry I'm not more help. Julie

Hey Bruc- Here is an EXCELLENT article about GI motility and mast cells http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm Read this before you totally rule out the idea of a mast cell disorder. The idea behind the multiple biopsies is to look for excessive mast cells. Apparently they are "patchy" in the GI trac- hence the need for multiple biopsies. I think this is commonly done during an endoscopy/colonoscopy. Like I said, this has to be pre-arranged with a GI to specifically look for them as they need a special stain & process, etc. (I've got the instructions if you want them.) It would be great if the GI could use the same biopsies for testing to better define your myopathy. Goodness, the pain & discomfort you have been living with warrants this extreme testing.....when or if you are ready. I should do lots more testing myself and am in a place where I don't see the point; so I am certainly not taking my own advice Sorry the gastrocrom didn't help, BUT I am pretty sure that has to be taken with the H-1 and H-2. Yeah, Miralax didn't work for me either- until the GI OKed up to eight doses a day. (I was repeatedly hospitalized at that point because my GI trac had completely stopped working.) I have settled on 3 doses a day with 500mg of magnesium & I am OK. My GI also recommended daily colonoscopy preps which sound like what you have settled on- in a lower dose? I so agree with you about the awful hand motility patients have been dealt with in this country- so few docs, so few drugs for a disorder that can be so disabling. It is shameful...especially considering that drugs like domperidone are available OTC in most other countries Better days ahead- Julie

Earlier today- yeah it's different now. There was no Florida, and no 2012. Thanks Kate. Wish it weren't so pricey

So True. I've been through the stages of grief for both myself and my son. As hard as it was to go through for myself; it was unbearably difficult to see my child go through this & have to come to terms with the idea that he may never enjoy the fullness of life that my husband and I had originally hoped for him. I hope it's OK to share, Here's a re-print of an article I wrote for the DINET Newsletter last Winter. Michelle Sawicki (site founder) actually came up with the idea. New Year/New You Accepting Your New Normal Anyone living with dysautonomia knows that there is a certain “coming to terms” with your previously held idea of what you thought your life would be like. No one plans to spend their life struggling with bizarre, seemingly unrelated health symptoms, that change day-to-day, sometimes hour-to-hour; symptoms that even render some patients homebound on a temporary or even permanent basis. For too many, this is the reality of living with an autonomic dysfunction. Psychologists have come to realize that patients living with chronic illness, like dysautonomia, move through stages very similar to those of patients facing a terminal illness. Elizabeth Kubler Ross’s groundbreaking book, On Death and Dying (1969), revealed the five stages of grieving. Moving from what you thought your life would be to what is actually is- is a process. The new year is a perfect time to take stock of where you are in that dynamic. -Denial Stage: This is the initial paralysis upon hearing the bad news. For many with dysautonomia, this stage is usually quite drawn out. Initially when symptoms strike, we assume we will be cured. Ultimately, many of us slowly come to realize that a cure may not be possible. We may have to learn to manage and live with our illness. Our lives will NOT be what we imagined.This is understandably a shocking realization. This stage can become problematic, however, when one stops here. I have a family member, with dysautonomia, who is stuck in the Denial Stage. He’s become a reclusive eccentric. He still works, but only in the middle of the night, when he feels best. (Luckily, he’s been able to create a career where this is possible.) He rarely wakes before late afternoon. He totally neglects his family. He’s seen an electrophysiologist, received a DX, but never fully allowed himself to come to terms with his illness. He tried his medication once, didn’t care for HOW it made him feel, so he pretends he’s fine. He doesn’t explain his absence at any family/school functions. That’s just who he is- a modern day ”vampire” living among us, but rarely seen. He works to avoid dealing with his reality. -Anger Stage: This stage usually occurs after the Denial Stage. Patients often release frustrated outpourings of bottled-up emotions, furious that they have to deal with a life changing illness on a daily basis. On the DINET forum, we often see members very angry with their doctors, family members, or significant others. Keep in mind that this is a healthy, normal stage in the grieving process. It’s important to safely work through this understanable anger and fight any cultural taboos against feeling/expressing anger. No one plans to live with dysautonomia. Your life is interrupted. Anger is OK and certainly justifiable. Getting stuck in this mode, however, is not healthy. To patients perennially in this stage, Dr. Kubler Ross was fond of saying: “Learn to get in touch with the silence within yourself and know that everything in this life has a purpose, there are no mistakes, no coincidences, all events are blessings given to us to learn from." -Bargaining Stage: This stage usually occurs after the patient has moved through the first two. It is often a personal and internal dialogue with one’s creator. In our most private moments, we might say, “If you cure me, God, I will give ALL of my money towards finding a cure for dysautonomia.” The patient reaches out to the universe in vain for a way out. -Depression Stage: Many living with chronic illness are all too familiar with this stage. It is a normal part of grieving our lost lives, but it feels awful. Patients at this stage can only see the losses associated with chronic illness. It is hard to move through your normal routine without feeling very dark and heavy. It is so important to recognize this step for what it is: an important stage towards acceptance. If you are worried you are stuck in this stage, ask yourself if you can still find pleasure in things that once made you happy. If the answer is no, don’t hesitate to reach out for help. Other signs of a more chronic depression include: trouble sleeping, sleeping an extraordinary amount, difficulty eating, or eating too much. Since symptoms of dysautonomia often overlap with those of depression, it is a good idea to seek professional help if you are unsure. An antidepressant (sometimes temporarily) can help one move beyond this stage AND can often improve symptoms of an autonomic dysfunction. -Acceptance Stage: At this point, the patient has typically progressed through the previous stages and begins finding a “new normal.” One sign of this is when they begin seeking realistic solutions to their daily symptoms. An example can come in the form of a simple lifestyle change. One forum member recently commented, “I notice I feel better if I shower in the evenings before I go to bed. Not having to bathe in the morning, gives me more energy to get through my day.” These small pragmatic steps are the beginning of truly accepting your new reality. Once you’ve begun to accept your illness as your “new normal,” you can truly find happiness again Most likely, you are not living the life you thought you’d have, but an equally glorious life; a life in which you are grateful for small moments of symptom relief/control; a life in which you have greater empathy towards others’ struggles. Patients at this stage are often described as having a bigger perspective. They’ve come to terms with their illness, found lifestyle solutions, and moved forward in peace. Dr. Kubler Ross contended that living with any illness could be seen as a gift. "It's only when we truly know and understand that we have a limited time on earth- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had." Do you recognize yourself in any of these stages? Are you worried that you might be stuck in one stage or another? Are you repeatedly cycling between two stages and not moving forward. Recognizing exactly where you are- is the first step towards acceptance. Dr. Kubler Ross noted that patients move through these stages in their own time, not all patients move through every stage, and the stages are not necessarily in order. We all ultimately move towards wholeness, peace, and acceptance when we are ready. "People are like stained-glass windows,” according to Dr. Kubler-Ross. “They sparkle and shine when the sun is out, but when the darkness sets in… their true beauty is revealed only if there is light from within." As this new year begins, and you consider making yet another resolution, instead of planning to lose/gain 5lbs, clean your closets, or wash your windows; how about working on finding your inner light instead? Use your illness as an opportunity to shine your light of greater understanding, acceptance & peace.

Jared, I am so happy for you I remember quite well how incredibly sick you were. I also recall that you were DXed with actual mastocytosis based on a skin biopsy. I have read a little bit about NeuroplasticityTherapy & believe that there is something there. The link you shared only has seminars listed for 2011. I would love more up-to-date info, especially about at-home options. Please elaborate. To skeptics, remember that dysautonomia was looked at the same way for centuries. Does vapors or neurasthenia ring a bell? I know firsthand that just a whiff of a scent, (Febreeze for me!) can flood my lungs with mucus, close my bronchiole tubes, leave me gasping for air & drop my BP to an immeasurable level. From what I have been able to learn Multiple Chemical Sensitivity/MCS and Mast Cell Activation/MCA seem to be the same phenomenon. The biggest difference that I can find is that MCS docs recommend avoiding triggers; whereas MCA docs prescribe a med regimen to treat symptoms after the exposure- both make sense to me. MCA also seems more "accepted" by mainstream physicians. Mastocytosis is fully defined by the World Health Organization. MCAD/MCAS is not far behind. MCS is more scoffed at by mainstream docs- some are even defining it as a psychiatric condition Here is a link by a physician who actually ran tests on his MCS patients and proved that they had MASTOCYTOSIS- not MCA (which requires less stringent proof.) http://www.mcsbeacon...heuser_main.htm "A few years ago I decided to test some of my patients for mast cell disease. Some of these patients with MCS actually turned out to have mastocytosis. Other patients were found to have a mast cell disorder. All diagnoses were made on the basis of skin biopsies done in an area which on inspection and palpation, showed no evidence of abnormality. It was also made on the basis of an elevated tryptase (an enzyme produced by mast cells) level. If mast cells were present in excess and/or if tryptase levels were elevated we would make a diagnosis of mast cell disease or disorder, if the clinical picture was also consistent with that diagnosis. In a few patients we also used a bone marrow biopsy to assist in the diagnosis. Mastocytosis is considered to be a very rare disease. Yet, I have accumulated more then 20 patients with that diagnosis in a matter of two to three years." Here is a good link about MCS- chockfull of info: http://www.mold-surv...nsitivity1.html A few notable things pop out at me: -The similarity between chronic CFS symptoms and MCS symptoms. -MCS patients have increased permeability of the blood/brain barrier. More and more research is focusing on how mast cells increase the permeability of vasculature. B & W/Harvard is now conducting a study linking MCA and EDS. -Nitric oxide is known to stimulate mast cells and may be able to slow the porphyrin pathway, causing the changes of such reported in MCS. -One treatment for MCS is B-12 (So many of us have noted abnormal RBC activity!) B-12 is a potent nitric oxide scavenger. So many similarities between the various camps- MCS, MCA, CFS, POTS, NMH, FM, etc. Definitely something here. I'd love to participate in Neuroplasticity Therapy- sign me up

Yeah- they always told my family members and I the same thing. I had one brother with a very early aortic aneurysm and another with a carotid dissection also at a young age. Me too, with bladder & uterine prolapse (despite the fact that I'm quite thin) and I also have multiple hernias- forgot to add that one. Mack's physician at Hopkins took many measurements- beyond the Beighton scale. It really is quite complex, but just like MCAD stuff, you can start to recognize connective tissue disorders pretty easily...with and without hypermobility. I have met so many with autonomic dysfunctions, connective tissue and mast cell disorders, I became CONVINCED that there had to be a connection. With Sarah (from Canada- also on this site), I started an international Yahoo Group to explore the relationship between the three. We have many members & physicians from all over the world are starting to recognize and explore this connection with us. There is currently a study at Brigham & Women's/Harvard working to genetically connect the dots between EDS and mast cell disorders. This is familial- despite the current medical literature which states that there is only ONE family with multiple members affected with mastocytosis. Almost every patient I have met has other affected family members. We learn so much more from talking with each other than we do from our physicians. At this point, they are learning from us- IF they are willing to listen http://uk.groups.yahoo.com/group/theelephantproject/ I, too, worry about my son. He IS very sick and actually received many of his DXes before I did. The good thing about your daughter is that you will KNOW what to look for IF she does become ill. You KNOW she may worsen at puberty and you will be beautifully poised to help her. You will know the best physicians, med regimen, etc. My prayers that she never has to deal with this. Julie

Claire- You crack me up Your picture makes you look like a Renaissance angel...little did we know that you're really a hip hop gansta gal. I like it. Predictable people are boring. Julie

Bruc, That sound awful to live with such pain and all of the accompanying symptoms . Mack (and myself to a lesser extent) predominantly experience nausea (as opposed to pain) when GI motility issues flare. This is constant for him... just as it is for you. He has to have daily treatment or he wouldn't be able to eat without chronic nausea and vomiting. When his GI stuff is out of control, the autonomic stuff is much worse too. Mack has a very complex med regimen. Dr. Rowe and his GI motility docs are attacking his issues from many different angles. I'll share his med regimen in case it is of any benefit to you. For his GI issues, he takes: Nexium (for GERD), Ery-Ped 800mg (as a GI prokinetic) & a daily Culturelle (I recall your docs are opposed to that.) At this point, he gets an average of one or two SIBOs a year. It is not constant and Zithromax is his treatment of choice. He also takes daily florinef and thermotabs (to boost blood volume), lexapro (he used to experience anxiety before he fainted- now it seems to help balance his autonomic nervous system), concerta (for fatigue and bradycardia), minocycline (to address any underlying infections, such as Lyme), claritin and ranitidine (to address flushing & other clinical mast cell issues.) His other meds are calcium (as he is dairy-free), a good multivitamin, sublingual B-6/12 (to address RBC abnormalities.) The fatigue, poor appetite, and nausea you describe are debilitating for Mack too- without his meds. He also gets intermittent severe headaches, not daily ones. He has to take narcotics, like codeine, to break them once they occur. I know you said that you've had MCAD ruled out- that's pretty tough to do as testing is so tricky. Have you tried an empirical trial of H-1's and H'2's to see if they have any effect? Mack uses claritin and ranitidine. I was in a very bad rut following my gallblader surgery. My GI tract stopped working entirely. I was in and out of the hospital for almost a year- THEN, the MCAD meds broke that cycle for me- WITH florinef and Ery-Ped. (I only needed the latter two for about a month.) I still have to take about 3 doses of Miralax daily to keep things moving. There are many studies linking "D" and even "C", IBS, nausea, vomiting, and all sorts of motility issues to mast cell disorders. The best way to be certain that that is NOT the source of your symptoms is to have multiple biopsies takes throughout the GI tract. These have to be stained with a specific dye and checked for excess mast cells. This is not a standard test & has to be pre-arranged between mast cell specialist and a GI. I plan to have it done when I undergo my endoscopy & colonoscopy this year. There is a specific mast cell stabilizer called gastrocrom that is very effective for MCAD patients with predominately GI symptoms. I am so sorry that all of the docs you have seen so far have failed to help much. When my GI tract stopped working, I thought I would die. It was so frightening. I was unable to do anything but lie down. It was terrifying when it happened to my son. GI motility patients are so under-treated and ignored in the US. And, the symptoms are incredibly disabling. Like you, I pray that medicine advances in this area to provide much needed relief. Hope my ramblings give you a few new ideas Julie

So sorry, Aaron. I know how frightening that can be- especially because you are equally worried about the treatment. I am very interested in your doc's paper. Who is he? Is there any way that you can share it with me? Many are beginning to put the same pieces together. There is a study at Harvard now, etc. I have long suspected a link between mast cell disorders and connective tissue disease. Mast cells are connective tissue cells, after all. I agree, as do some docs now, that POTS is just the symptom that results from this. Carol, don't be too quick to rule out a connective tissue disorder. My son is also quite stiff jointed & he is still DXed with an unnamed connective tissue disorder. There is more than hypermobility to be considered in obtaining a DX- skin fragility, early gum recession, family or personal history of vascular abnormalities- especially aneurysms, etc. Take Care- Julie