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POTSMama

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About POTSMama

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    csammeth@yahoo.com

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  • Gender
    Female
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    Colorado
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    POTS, MCAD
    Does anyone want to start a Colorado support group with me?

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  1. Hi Carol, I saw you are using LDN.  How did you start out and ramp up dosage-wise and what if any side effects did you encounter?  I may begin a course and am in uncharted territory (but ever since I was dx'd with POTS, it has been that way).  Thanks!

  2. Hi Michelle, Sorry it took me awhile to respond - I don't often log onto this forum anymore. I'm afraid there aren't any great doctors in Colorado for POTS or MCAS - - I know because I hunted for one. My family doctor was open and helped diagnose me with POTS but he I don't think he is taking new patients right now as he's moved into an administrative role at a hospital system) and he only diagnosed me after I went to a cardiologist, Dr. Collins at South Denver Cardiology. Dr. Collins also isn't an expert on POTS either, but he did the tests including Table Tilt Test that determined I had a dysautonomia rather than a heart problem, so when I read about POTS and realized that made sense, my family doctor and I came up with that diagnosis (Dr. Collins didn't at the time seem familiar with the diagnosis POTS altlhough he likely is now). So one has to be proactive and educate your doctors since this isn't common enough that most are familiar with it. Then I discovered I had mast cell disorder (MCAS) pretty much on my own (I have a PhD in an unrelated health care field, so I knew how to do research on things) - - I realized from reading this website that MCAS fit, but my family doctor didn't believe me (thought I was just self diagnosing from online) so first I went to local allergists who were unfamiliar with MCAS. Then I went to doctors at National Jewish hospital in Denver, because they were more familiar with this, and they did the tests that led to an MCAS diagnosis (I had two high mediators in urine/blood tests, but they did do the testing when I was symptomatic and that made the difference I think. The two local allergists didn't know much about MCAS and tested me when I wasn't symptomatic, but one was willing to learn about POTS and MCAS so that helped... his name is Dr. Koepke from the Colorado Asthma and Allergy...I gave him articles about POTS and MCAS and he was interested and actually read them). But he isn't an expert on POTS for sure. My worst symptoms of MCAS developed years after I got the POTS, although looking back I did have early symptoms like heat sensitivity, red body flushing after hot showers, occasional dermatographism, reactions to high histamine foods like strawberries sometimes (made me itchy), episodes of body-wide itchy skin, odd asthmatic like episodes that came and went, etc .... I just didn't get an anaphylaxis or develop the food "allergies" and smell sensitivity until much later. My first major symptom was an anaphylaxis to an antibiotic. But the interesting thing is treating the POTS with medications (benzos, salt tablets, beta blockers -- turns out the beta blockers were making my MCAS much worse so I was better without them) never did do that much to help, but once I treated the MCAS with daily antihistamines (H1 and H2 blockers) and vitamin/mineral supplements, the POTS symptoms dramatically improved! Looking back, I realized that when I occasionally had taken Benadryl for a cold or to sleep better or for hay fever, I had less POTS during that period. So clearly the MCAS at least partly underlied the POTS. After I knew about the MCAS, I did 23-and-me genetic testing and a holistic doctor looked my test results over with me and found out that what underlied the MCAS was probably partly methylation errors (MTHFR gene issues)... I don't detox well. So we treated that too with supplements, which helped. It was a long 25+ year road but I finally got to the point where nearly all my symptoms were under control...I have rare flares of POTS but only when under a lot of mental/emotional stress or not taking care of myself physically (e.g. not enough sleep and healthy foods or forgetting to take my supplements). I think I would've gotten better much sooner if I'd only known! The holistic doctor I saw was Dr. Wiesnieski from the Natural Medicine clinic in Berthoud, Colorado (yes I drove 50 minutes to see him a few times but he also sometimes does phone appointments once you're an established patient). He gave me supplements that helped and I recommend him. Finally, most recently I unfortunately discovered I have early stage rheumatoid arthritis (I don't believe this is related to the MCAS or POTS, but it does run in my family) and I didn't want to go on the hard-core meds for that if I don't have to (I prefer supplements and natural methods to pharmaceuticals when possible), so I went to another holistic doctor in Golden, Colorado, Dr. Grossman of the Grossman Wellness Center for an LDN prescription (low dose naltrexone, I take 3 to 4.5 mg, which is supposed to modulate the immune system and help RA), but I was under the impression he didn't know much about MCAS or POTS at all. Besides these docs, the person most instrumental in my getting well was Yasmina of the website "the low histamine chef" - - she is mostly for MCAS but her website was super helpful to me and I went to a retreat she was at and she convinced me of the importance of a non-toxic lifestyle and a healthy mast-cell modulating diet, which has made all the difference in the world. My POTS has waxed and waned over the years, and I don't think moving to Colorado made any difference for me - - however, stress makes a huge negative difference so perhaps you had a stressful move/adjustment (?), and sometimes my POTS flares for no apparent reason before settling down again. In fact, Colorado seemed to help me, as I don't do well in heat/humidity and summers were more reasonable here heatwise... but I was originally from here and coming home. We are all different and it may be what our bodies are used to. Interestingly, my POTS disappeared when I was pregnant (16 years ago now) but recurred after I gave birth, so hormones are obviously an issue too. I am post-menopausal now so don't have that monthly flare I used to get. Have you been checked to see if you have MCAS too? You might try taking an H1 antihistamine like Zyrtec and an H2 blocker like Zantac for a couple weeks since they have no side effects, to see if that makes a difference in your POTS symptoms, assuming you don't have any medical reasons not to (I am not a doctor so don't want to prescribe, but these are over the counter and without obvious dangers as far as I know) to help know if MCAS is it, if you have any symptoms of MCAS (skin itching or flushing, food 'allergies', hives, asthma like episodes, numbness spots on body that are transient, reactions to heat/sun/medication/emotional stress, throat and bowel symptoms - - and not everyone has every symptom of course). But if you are planning on getting tested for MCAS, don't take any H1 or H2 meds as it will make it harder to diagnose you. Here's my current regimen that keeps me mostly healthy: 1. I take an H1 and H2 everyday - - I currently take 1 Atarax (hydroxyzine) for an H1, which is prescription, but I am thinking of switching to Zyrtec as it's less strong (I take the least dose of things that controls my symptoms), and 1 Zantac 150 mg (I can skip the Atarax sometimes and be fine but can't skip the H2 at all or I get reflux badly). I used to take 2 per day of each but over time I have been able to reduce that. 2. These supplements (from Dr. W) - - BH4 (for methylation errors), molybdenum, vitamin C and quercetin (mast cell stabilizers), a multi-vitamin and mineral, and sometimes oil of oregano for detoxing or a natural iron supplement if I get anemic, and occasionally other supplements as my symptoms dictate. We also trialed some other supplements that I didn't think helped (like HIST-DAO) but he worked me through determining what worked for me. Also, because I also had a parathyroid adenoma removed last year (discovered by high calcium in my bloodstream), I have to take a calcium and vit D supplement so as to rebuild my bone strength (I had early osteopenia at the time that was discovered - - that also is something that runs in my family that I don't think was related to my MCAS and POTS ... we just seem to have bad genetics!). 3. I eat a healthy diet re: Yasmina the low-histamine chef. I eat chicken and beans for protein (I'm otherwise a vegetarian), lots of vegetables and some fruits, some grains (I do white rice and oats only). I don't eat dairy, gluten, soy, artificial colors and flavors, or most packaged foods and I try not to eat much sugar ... I eat mostly whole foods. Initially I avoided high histamine fruits and veggies, but can tolerate more of these now, and I make sure food like chicken does not sit out and get histamine (I freeze immediately after cooking). I make Yasmina's green soup and green smoothies, and I do things like gluten-free zucchini muffins. Also, I use loads of mast cell stabilizing and anti-histamine property herbs and spices on my cooking. Healthy food choices has made a huge positive impact on my health. I also drink healthy teas. 4. I try to drink a lot of water and get moderate exercise - - too much or too rigorous of exercise makes me POTS and MCAS flare, so I have to take it easy. I like yoga and walking meditation. I try to get 8 hours sleep a night and I watch my stress levels emotionally - I have taken up journaling and meditation (I have three teen daughters and that can cause a lot of stress at times, much as I love them!). I avoid getting either over-heated or overly cold as that can trigger me (over heating triggers MCAS symptoms and over cold triggers POTS). 5. On now-rare occasions when I have a POTS flare for a few days (which is less blood pressure whacking around like it used to be, and more just tachycardia with movement), I take 1/2 a clonazepam (an anxiety drug, but I don't take it for that, I take it because it calms down the immune system) and I increase my antihistamines temporarily, and that seems to help until it calms down. 6. I avoid all toxins - - I use natural cleaning solutions (e.g. vinegar and water with a drop of essential oil instead of Windex, etc), all-natural shampoos, soaps, lotions (I use Lubriderm lotion, any natural soap, and I like the "100% natural brand" hair care products), and I use the "100% natural" brand cosmetics. I don't use perfumed products at all except all natural essential oils for smells (and some I react to, so I'm careful), and I use "Free and clear" laundry products. We don't use toxic products on our lawncare either. 7. Finally, I don't know if it's coincidental or not, but since I started on the LDN supplement for my rheumatoid arthritis, it seems to have helped my smell and food sensitivities! Someone told me Dr. Afrin was trying it on mast cell patients, so maybe there's something to that, since it is supposed to modulate the immune system. It was not helping my stiff joints so I was going to give it up until I realized it seemed to help the MCAS so I'm keeping it (I finally broke down and am taking Plaquenil for the arthritis but that hasn't so far seemed to have any impact on my other conditions or symptoms, except I'm slightly POTS flaring). I avoid taking many over the counter or prescription drugs as I react to so many, but once my MCAS stopped flaring, I've been able to tolerate the occasional Tylenol or dye-free ibuprofen (even though ibuprofen is supposedly mast cell degranulating). Oh, and I take Imitrex for the few times a year I get a migraine headache and I tolerate that in small doses. Perhaps too much information and each of us is different, but I thought I'd share my story in case it helps someone. When my MCAS flared 7 years ago, after 20 years of horrible off and on POTS symptoms, I was literally bed bound for a time, very sick. But with time and care, I now live a normal life... I work, take care of my daughters and husband and house and yard, can do and go anywhere so long as I'm careful what I'm exposed to and what I do/eat (I take food with me when I travel). For awhile I could not even gas up my car without the fumes giving me an asthma attack and hives, but now I do so just fine, slightly holding my breath when I do the gassing. I also could not for a time go to my kids' school performances without a mask because others perfumes got to me, and now I can tolerate the smells even though I don't like them. I used to not be able to eat out ever, and now I have found restaurants that will cater to my food needs. So the point is, there is hope for recovery and just having to treat this as a chronic illness. I realize not everyone is as fortunate as me and not everyone recovers, but don't lose hope as it took me a very long time, and a very lot of research, trial and error, and hard work, to get where I am. And I knock on wood superstitiously every time I say that, as I don't take it for granted!! Good luck and if you have other questions, send me another email. Where in Colorado are you? We are south suburbs of Denver (Lone Tree/Highlands Ranch) if you'd be interested in getting together and talking sometime. Carol
  3. Stace915, I ate vegetarian for years also, but when I had to restrict my diet so much I added chicken for protein (still don't like it, but feel worse without it - - make sure you are getting enough protein and B12 methylcobain sort if you can tolerate it [I can't]). From your description I suspect you do have MCAS rather than just normal allergies. I spent years thinking I just had POTS and "allergies". But MCAS is different and once I knew I had it, I had a better idea how to handle it, and just throwing more and more allergy meds at it didn't help all by itself. I really think you should detox your toiletries... even unscented commercial soap makes me itch, so I use Tom's of Maines or all natural glycerin instead and I don't use too much to strip the oils on my skin. I cannot use prescription or over the counter commercial lotions or I itch, except for Lubriderm, and other than that I buy lotions from 100% pure. For what it's worth, your mention of itching under your lip is familiar and itcing with no hives or rash too. I used to itch full body and scratch so hard I'd make welts, but otherwise my skin looked normal (I in fact typically did not itch when I broke out in hives, which was rare), and lip area would itch and sometimes just go numb. I still get itching sometimes, I won't lie, but it is so much more tolerable now and when I do, I take Benadryl or an extra hydroxyzine and it goes away usually. I also take coolish rather than hot showers (hot showers make me itch) and use natural shampoos (100% pure) else my scalp starts itching ridiculously. Is there a doc in your area familiar with MCAS or who is willing to read everything about it and become familiar? I live in Colorado and did not have an MCAS specialist here but had 3 MD docs willing to read about it who got me diagnosed (my family doc was resistant when I told him I thought I had this, but I was persistant), and then I found a "wellness" doc who knew something about it and read more later. I am surprised you had a dermatologist who didn't think of mast cell disorder, as they are ones who do know something due to external manifestations of mast cell reactions in some people. A note also is that you need to be careful of fillers in your meds - - there is one brand of Ataraz (I take generics as my insurance won't cover the nongeneric) that I can't take because it makes me reactive including itchy, but can take other brands. Whenever I start on a new med, I take a minute dose (pill split if possible) and work up. I hope you get your answers and get well soon! Anaphylaxing, Would love to hear how you are doing now. You and I had so many symptoms in common but last I heard you were still struggling a lot. I think about you and hope things are finally looking up. Carol
  4. Hi Stace915. I haven't been on here in years, but received notification of your post via email and I'm happy I did so I can give an update. Reading my posts from years ago, I recall how very desperate I felt at the time! First of all, I can tell you that I am much, much better so there is lots of hope for improvement! I now live a fairly normal life, working a job, taking care of my children. and doing most things I want to do. I don't always feel great and I still have bad days, but more good ones than bad and I am extremely grateful for that. I think my immune system finally settled down with vigilance and a multi-faceted approach. Currently I still eat a fairly proscribed diet but it's mostly healthy - - I eat chicken, vegetables (salads, soups, etc), some fruit and some non-gluten grains like rice mainly. I don't do dairy, soy, gluten, many processed foods. I can have an occasional glass of white wine (not red, too much histamine) and I can again have an occasional cup of coffee and I drink herb teas and a lot of water. I don't like perfume smells still (I had become very chemically sensitive), but can tolerate them now if I must by taking Benadryl, but I don't use perfumed items and I use all natural cleaning supplies in my house and all natural garden and lawn treatments. I even use natural cosmetics and shampoos from a company called "100% pure". I now flush and have skin itching/hives very seldom, and usually only when I have goofed such as eaten the wrong (high-histamine) food or drink, or when I'm stressed about something.. I can tolerate heat and cold extremes better, although I don't love heat still so keep my house cool. I rarely have POTS symptoms at all now, and mostly have to deal only with occasional MCAS symptoms. Besides what I've already mentioned, here's what worked for me -- I slowly weaned off the very high doses of antihistamines my physician had me on at first (I only used very short term prednisone when I was so sick and don't think it helped) so I now take a maintenance dose of 2 Atarax (hydroxyzine) per day and 2 Zantac (those are H1 and H2 blockers for the MCAS). If I'm feeling short of breath, I sometimes take a Singulair or use an inhaler, but rarely. If I have a reaction to something, I take extra hydroxyzine or Benadryl. I have not had an anaphylaxis for years now, thank goodness and I'm thinking of even reducing my antihistamines further. If I have POTS episodes I sometimes take a clonazapam (benzodiazepine) to calm the nervous system, but rarely. Since I got on antihistamines that work well for me, I have stopped having serious POTS symptoms, showing that MCAS probably underlied that in my case. If I get itchy, which doesn't happen often either, I also take some extra Benadryl, but I try not to take it too much. I have also taken a holistic approach... I read about how certain herbs and supplements are mast cell stabilizing and added those to my diet. The best source I found for the holistic approach was the low-histamine-chef website by Yasmina (she too has largely healed from MCAS with holistic approaches). So I use a lot of herbs in homemade chicken soup and I take bioflavinoid supplements like Neuroprotek and quercetin with vitamin C. I also worked with a holistic doctor who put me on vitamins and minerals, and also supplements to help with methylation and detox. Finally, I realized that the stress of the illness itself was making me sicker, so I have used relaxation, mindfulness meditation, extra sleep, positive visualization, etc, to help me heal. It may sound like the latter is frivolous, but it's really not... we need to be destressed for our bodies to heal. I am not perfectly well. I have flares now and then, and other health issues crop up that may or may not be related, but I do think my immune system and gut have healed enough that I don't mast cell degranulate as hard or as often, and that has made all the mult-system symptoms better: less asthma, less heart rhythm and blood pressure problems, less brain fog, less reactions to food and smells and temperature, less bladder over-reactivity (interstitial cystitis), etc. I should mention that I don't have an EDS diagnosis but loose joints and collagen problems run in the family so I too think I have the triad of MCAS, POTS, and EDS-like. There is a Facebook group called The Elephant Project that addresses those of us with the triad if you want to consider joining. Now to answer your specific question re: itching/skin issues. Probably you need to make some changes in your diet and environment, and you may want to consider getting off the allergy shots. People with MCAS don't do well on those because they don't "desensitize" us but rather stir things up. Avoiding triggers is a must while you heal. If you use chemical housecleaning products, stop and get natural ones or use old fashioned cleaners like baking soda and vinegar. Throw out commercial beauty products and try all natural ones, and that includes shampoos, lotions, makeup, soaps. Don't buy plastic products that outgas or new furniture that outgasses formaldehyde (we only buy used furniture now that has already outgassed). Make sure there is no mold in your home and open windows for fresh air often or invest in a good air filtering and water filterig system (there are books on making your home 'safe'). We moved to a different house with sunny windows, and no mold, and with air filtering, etc, and I have felt much better here. As far as diet, keep a log of what you eat and your symptoms and try removing suspect foods. Even be careful of the meds you are taking, as they can have fillers you can react to. Eat whole organic foods and avoid additives and preservatives. Once you make your environment and food sources safe, you may find the skin condition improves. You may want to see a holistic doc familiar with mast cell disorders if you can, and find an allergist who understands that MCAS can't be treated the same as standard allergies. Good luck! I'd love to hear how you fair! Carol
  5. One more voice chiming in - - I live in the suburbs of the mile high city of Denver (5280 feet so our air is somewhat rarified, and ven more noticeable when you go up in the mountains) and I also notice changes in barometric pressure (I think it's sudden changes for me) and high humidity are a negative factor in my breathing ability as well. But I have been breathing better since I've been on both Singulair and Allegra for the MCAS, noticeably better. I take 10 mg Singulair (the adult one; the kid one has red dye which I'm sensitive to) and 180 mg Allegra - - I also take Atarax and Zantac, but didn't notice the improved breathing until I added the others.
  6. I don't have any real tips, but I know what you are talking about. When I'm exhausted at bedtime I lay there feeling like I can't draw a complete breath and also as I'm dozing off I sometimes stratle awake with a deep breath like I've had an episode of apnea. I had this for years. Sometimes it seemed to help to prop up more or lay on my left side and take a few deep breaths. Sometimes if the shallow breathing/tight chest was accompanied by BP volatility I took a small dose of clonazepam (Klonopin) and it seemed to calm my system down and loosen up my chest. Since I've discovered these last few months that my POTS is likely related to mast cell activation, I've been on antihistamines (several) and the anti-leukotriene drug, Singulair. It's interesting but I'm finding that I have fewer nighttime episodes like that and feel less breathless in general while on these allergy meds. Don't know if it's related or not, but might be as I might have been having mast cell activation in my lungs (like an asthmatic person but I don't have asthma). Come to think of it, even before my mast cell activation was discovered, I used to feel better when I took Benadryl (an antihistamine).
  7. Yes, I've always shown a normal echo even when though I have tachycardia often..
  8. Yes, it definitely can be POTS related when you have an otherwise healthy heart (but do get a cardiologist to check you out if you haven't already). When I first got POTS symptoms many years ago, a 24 hour Holter monitor showed an alarming number of PVCs according to my cardiologist, but mine have subsided over time and especially now that I found out I have mast cell activation problems and am treating that condition, I rarely have heart rhythm problems. Still, from time to time over the years I'm sure I've had PVCs, as I can feel my heart beating forcibly and feeling like it's skipping beats. This used to happen most often if I had too much caffeine or red wine.
  9. I had POTS symptoms for 15 years with no tinnitus, then one day unilateral (one ear) tinnitus episodes began so I had an MRI to rule out an acoustic nerve tumor on that side, which was negative. After a couple years it became bilateral but still was only once in awhile - - most notable after a busy day when I was laying in bed and the house was quiet. Then, like Anaphylaxing, I developed a near constant bilateral tinnitus that fluctuates in loudness about the time I had my anaphylaxic episode and started showing mast cell activation syndrome (MCAS) symptoms (several months ago and it hasn't abated much). People with sinus problems can have transient tinnitus when they have fluid in their ears (or negative middle ear pressure - - like when you can't "pop" your ears), and people with Meniere's can also have tinnitus (although with Meniere's it is most commonly described as a lower frequency buzz or hum or like bacon frying), and it can be caused by certain ototoxic drugs, but the most common reason is loud noise exposure damaging the inner ear (and medication or noise induced tinnitus is most commonly described as a higher-pitched ringing or sometimes a 'static' sound or white noise). I think mine is not due to any of the above, but rather due to the POTS (and/or MCAS) - - my tinnitus definitely gets louder when my blood pressure and pulse are off, or when I'm feeling worse. I can usually tune it out but sometimes it really bothers me. If it bothers me at night I put a fan on in my bedroom to help block the noise out. In any case, since we have tinnitus now, for whatever reason, it is important to make sure our ears aren't exposed to very loud noises because then the tinnitus could get worse (loud noise includes gas-powered lawn mowers or power tools, and it is recommended that earplugs be worn when using machinery like this).
  10. Elegiamore, You are in my thoughts and prayers that you find some relief soon!
  11. Sandy, have you been evaluated for mast cell activation disorder/syndrome? Because BP dropping out and weight loss can be symptoms. Of course they can be of a lot of other things too, but just thought I'd throw that out there.... I hope you feel better soon!
  12. Yeah, hmmm, OK, that didn't come out right! I mean he says he is just going to be ageless from now on, NOT that he doesn't want to be around! We both started saying we were "49 and counting" a few years ago....
  13. Julie, I'm sorry to hear you're having some unexpected health issues, but I'm 53 in April and many of my friends are in the same age range and I'm seeing all of us having a variety of medical issues (including cardiac issues) now, even those who don't have POTS/MCAS/connective tissue issues like you and I. (I've had POTS symptoms for more than 20 years and now this year major MCAS symptoms hit, for those who haven't been following my story). My husband, who just turned 52 (and has been a type 1 insulin-dependent diabetic for over 20 years), complains that getting old is really the pits and then he jokes he just isn't going to do it anymore. That is not to say that we with POTS and related illnesses don't have to work harder to stay healthy and be more careful , plus realize we are at higher risk for problems, but I think we need to assume that we can live old too - - my mom died last year at 88 and her sister died last year at 86 and I'm convinced looking back that they both had POTS and my mother probably also had MCAS - - I wish I'd known when she was alive what I know now, because she was on all the wrong meds and wrong treatments and I think she might have lived longer and been more vital if she had had a POTS/MCAS expert working with her instead of just a senior's doctor who put her on an insane number of medications with adverse side effects I tried to get her off some of the meds, but her generation just did what the docs told them to and never questioned it). I feel very sad that I couldn't make her last few years better, but I was at least able to be around and help her and love her. But I don't worry as much about living old as I do about living with good mental function when I'm older... both my mom and her sister showed some dementia and significant memory loss problems in their late 70s and early 80s. I am hoping that because I now know what is going on with my health, while they didn't, that I can get the proper treatment and not end up as bad off. I just want to be reasonably mentally fit, whether I live old or not. And as an OLD Mom (I have 9, 11, and 12 year old kids - - the 9 and 12 year olds were adopted but yes, I was pregnant at 40 and gave birth to a baby at 41 [my one and only pregnancy]), I'm going to fight like blazes to be around and "with it" to see my kids grow up and have families of their own. Of course it's easy to worry (I do worry despite my bravado above), but none of us have a crystal ball and so I think we just have to do our best to get healthy, stay healthy, and not give up!
  14. Well, I am still ruminating on the appointment I had today with my new allergist/immunologist (2nd visit, to go over test results). Overall I think it went well. Here's the highlights: 1) She said that I had "60% higher than the upper limit of normal" levels of n-methyl histamine in the 24 hour urinalysis (which was taken during an episodic period). She said that this finding explains my symptoms. 2) She said that the prostaglandins and leukotrienes were not elevated. 3) She said that the tryptase, taken during the same general period as the n-methyl histamine, was not elevated 4) She said that the genetics did not reveal any abnormalities (negative for C-Kit mutation, etc.) (there were some other tests she mentioned but these are the ones I recall; basically everything was normal except for the histamine). So she said that the good news is that this indicates I do not have mastocytosis, myeloproliferative disorder or hematological disorder, but that the high histamine clearly indicates that something aberrant is going on. I asked if she thought that meant I had mast cell activation disorder and she confused me by commenting that since the tryptase wasn't high, she didn't think it was just mast cell degranulation but maybe that also the basophils and eosinophils were a factor (I need to do some reading to see what that means - - this is out of my knowledge zone... anyone else have thoughts on that? - - does it make sense?). She spent a great deal of time talking to me about how I'm doing on the new meds regimen, and what my concerns are. I told her that my main concern was that I couldn't eat very many foods without reactions and was still losing weight, and that I thought the missing ingredient in my meds regimen might be a mast cell blocker (as some of you here have told me). She agreed and wrote me a prescription for cromolyn sodium (Gastromcrom). She did NOT want me to try any other meds right now or too many new foods at once, as she did not want me to change more than one thing at a time and to do changes slowly so I don't compromise my newfound relative stability of symptoms (e.g. my smell sensitivity has decreased about 50% since I've been on Allegra and Singulair and cut back on the first generation H1 blockers). She also said that it was important that I recognize that emotions can be a trigger too, and to that end she suggested I consider breathing exercises, meditation and yoga if I'm feeling stressed (which I'm already doing as much as time allows; I agree that stressing makes it worse so I'm working on that). She gave me a list of high histamine foods to avoid, and told me to come back in 2-3 months, but call her in the meantime if I had concerns or question. So I guess it's a good start - what think? And what about this notion of basophils/eosinophils? (I do think her insistence that tryptase has to be high is because she is not familiar with newer research showing tryptase is not such a great mediator marker, but she seems reasonably knowledgeable on other things including POTS). Even though she won't put the diagnosis MCAD on right now, she seems to be using the same treatments as if that was the dx so I'll run with that for now....
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