Dizzysillyak

Hi brethor, I empathize with you on being off your meds. Hugs .. When you find something that works it's hard to give it up. Sorry to hear you're having excitotoxin symptoms still. I'm only ok because I'm on the wahls / paleo diet so I only eat organic meats, veggies and fruits. I over produce antibodies to gluten so I have no choice but to avoid all cross contamination. Fwiw tho I'm learning some tricks on how to undo my excitotoxin reactions. I just got nailed from eating lamb that had been wrapped in freezer paper. Bleh ! Charcoal helps as does Himalaya liver care. I can only take 1 charcoal capsule once in awhile tho. It seriously depletes my nutrients if I take it even twice in a row. I always take chelated minerals the day afterwards. I use Natural calm to help move the toxins out of my body too. I'm Not sure why kefir works this way for me. I become allergic to it if I use it too often but it works great If I use it sparingly. That's all I know for now. I can't imagine this working if I was eating all the toxic food that I was eating before tho. I unknowingly was always "jacked up" on something. Good luck on your tests. D

I was on klonopin for 16 years and it never calmed down my reactions to gluten, msg, etc. The only way any med stopped the excitoxin reactions I had was if I took enough and became a zombie. Removing these toxins helped calm me down completely. It took about two years to recover from gluten, dairy, soy, msg, etc and ten months to finally get over what caffeine did to me. And we're giving this to our kids ? Huh ? But I still appear to be getting vasodialation from some unknown source because Wal-zyr stops it and is allowing me to say upright for hours now. I just have to keep taking it throughout the day. I just started this about two weeks ago but the change was immediate. I'm just fine tuning the protocal to include a variety of h1 and h2s. No excitotixins are involved in my orthostatic intolerance as far as I can tell. I stay totally calm since giving up caffeine until I start adding in certain supplements. I know Adb12, mb12 and p5p are toxic to me sometimes but not always. I'm assuming there are toxic fillers in these. Fwiw, I never heard of Cheney curing anyone so although I respect his opinion, it's no better than some of the great info we find on the web. Tc .. X

Hi again, I forgot to say that several years ago I found that using all natural personal hygeine products kept my reactions down too. I know Whole Foods and other health food stores carry these. At one point the Target store near me carried these but stopped. Publix carries a natual Greenwise toilet paper. Using less laundry soap helps too. Adding white vinegar to the final rinse helped too. I'm still playing with bath soap to see what I like. Brenner's baby left me feeling soapy and made cleaning my tub and shower a nightmare. I only use liquid soaps so clean up is easier. After looking at all the easy to find products that I've had to stop using, it's no wonder so many people are sick. Non stick pans, dyes and chemicals in our foods, hygeine products, etc etc contain toxins. Tc .. D

Hi batik, I'm not sure if high quantities of these allergy meds will cause problems later on. I haven't gotten that far in my research. Googling all the antihistamine names is keeping me busy.. I'm spreading out taking my Wal-zyr throughout the day and taking 5 mg at a time when I start feeling weak again. So far I seem to need 10 - 20 mg in the morning, 5 - 10 in the afternoon and nothing late in the day. I have no idea why yet tho. I looked up alememazine (sp?) and saw that it's a sedating antihistamine. So far the ones that sedate me (vistaril, allegra and benadryl) aren't helping my oi. These just make me want to sleep or zone me out. Only Wal-zyr has helped my oi and "v" so far. I ate tomatoes, a fibro trigger, and was pain free but I only ate a small amount. I was out of town and went a little wild for a few days. Lol .. There's an article on the web that says women can be allergic to their own estrogen. I think you can find it by googling estrogen allergy. This may explain the timing of your symptoms. Fwiw, Wal-zyr lists corn starch as the first ingredient and I know from experimenting with foods for years that corn starch makes me energized. I bought brand name zyrtec today to see if it works the same. Tc .. D

Sorry to hear you can't find his triggers. Good luck with gastrocrom. I'm beginning to understand this concept better myself. I found and avoided multiple triggers for 7 years but I just developed new intolerances to some of the new foods I added. I'm even allergic to some of my probiotics now too. Including an expensive Metagenics one. So much for taking probiotics to heal the gut. As much as I hate to admit it, I still feel much better avoiding my known triggers tho. It was fun experimenting with these and antihistamines while it lasted. I made the mistake of drinking Kombucha tea over the weekend thinking I was giving myself a treat. My prize was a swollen bottom lip. Lol .. At the risk of being a pest have you tried steroids or other immune suppressants ? I found some mcas people on the web trying these but didn't look into yet. I was thinking we may need to take these in the beginning and at regular intervals if things get out of hand. I started with 10 mg Dhea and 10 mg pregnenolone last week but it hasn't helped. I'll be increasing those today. I'm completely clueless about steroids tho. I know my dds docs used to give them to her after she needed her epi pen tho. I guess it helped. It still took her a few days to feel normal again. Tc .. D

I haven't tried Gastrocom but I noticed you tried aspirin. Aspirin is an nsaids that damages the gut lining. It may take some time for his gut to heal from this and may require a bland diet, bone broths, probiotics, etc. I'm having success with Wal-zyr. But .. I can already tell that I can't over eat my known trigger foods without some break thru symptoms. It took several days for me to react to all the chocolate I was eating tho. So do you know what his trigger foods are ? Common intolerances are gluten, dairy, corn, soy, eggs, chemicals , etc. Or whatever he craves. I stopped craving chocolate until I had it again. Then I acted like a junkie needing a fix .. Lol .. It makes sense to me if you think about feeding peanuts to someone with an anaphylactic reaction to peanuts. Even an epi pen doesn't always work. Tc .. D

Hi Marsha, That's great that doxepin is doing so much for you. I'd stick with it too. We have similiar diagnosises. But I "think" my body temp is ok now unless I'm exhausted. I "think" becoming post menopausal helped stabilize it. Hi batik, I'm excited about this too. Finally some relief from all that pain. : ) And I can stay upright longer. : ) I just need to find some balance and not overdo it. Are you just taking 10 mg of certirizine / zyrtec ? I need about 20 - 30 mg to keep my pelvic pain away. But I'm eating chocolate which I know triggers it for me. Lol .. It's great that you're responding to a lesser amount tho. I read that about using multiple antihistamines too but I need to research mast cell treatments more. So far several of my attempts at adding other antihistamines has failed but I've only tried nasalcrom, vistaril and allegra. Allegra made my nose bleed yesterday too. It's just too drying for me. I'm ok with children's dye free benadryl tho. If you google mast cells vulvodynia you'll find some articles on this. tc .. d

Thanks svt. I'm new to the mast cell info but there's a lot in this site about it. Like I said above tho, the trick for me is to keep taking it throughout the day. For example, this morning I started with 10 mg of Wal-zyr but reacted to coffee and a homemade danish (which I stopped years ago because I was reacting to these) so I took another 5 mg then another 5 after it didn't stop my reaction. I feel great now and I'm headed out to run some errands. Just last week, prior to Wal-zyr, I was laying down and resting most of the time. And fwiw, This may or may not apply to you, but I'm going to have to watch out for my me/cfs and celiac / gluten intolerance flaring from overdoing it. I don't feel like resting anymore and I "think" I got nailed over the weekend from eating out the whole time. I had a great time tho .. : ) Tc .. X

Thanks pam and katy. It's definitely a welcome refief after everything I've tried over the last few years. tc .. D

Thanks marsha, I'm definitely excited about finding something that works for fm, oi, pelvic pain and hopefully my swelling. The info here was just what I needed to get me started. The part about taking an allergy med seversl times day was the key for me. Without that I'd still be feeling crappy most of the day and not knowing why. I seem to need meds every 2 - 3 hours or with meals. I googled doxepin and saw that it's similiar to vistaril. Is it helping you ? If so with what ? 25 mg of vistaril knocked me out for 3 - 4 days so I'm not going to try it again anytime soon. I tried Allegra yesterday and today and it's making me too sleepy too. And it's drying out my sinuses which I don't need. So far Wal-zyr is the only one that's making me feel better during the day. But I have a lot of allergy meds and supplements I want to try. Tc .. D

Hi All, I wanted to post some good news. I've been here sooo long and never made any real progress with my orthostatic intolerance until now. My orthostastic hypotension (bp dropping 20 pts in 3 minutes) disappeared in Feb 2012 after treating for h pylori and parasites. But I'd also switched to the Wahls diet and was eating less meat. I still had to lay down most of the time due to pots. I started taking Wal-zyr last week and noticed an improvement in my oi after just 5 mg. I'm not getting the urge to lay down after only a few minutes but I still feel my upper body relaxing when I do. This is varying so far and may depend on which allergy med I take and what I ate. For example, Vistaril and Allegra made me sleepy and made me want to lay down more. I'm up to 20 - 25 mg of Wal-zyr a day and still learning when and how much I need to take. Vistaril and Allegra knock me out so those have been eliminated for now. Coffee helped undo the Allegra reaction. But nothing helped me with the Vistaril reaction. Wal-zyr isn't stopping my mouth and throat swelling so I'm still taking children's dye free benadryl at night. I went crazy and ate several of my pain trigger foods in the last few days without being in pain. I don't know what I'm eating that may be causing my io. It could be dust, chemicals in the air, etc too. Of course I don't know if this will continue to work but I'm hopeful. Mast cells are implicated in fibromyalgia, pelvic pain and oi so as an allergy sufferer, it only makes sense that I'd respond to this. Thanks again for posting the mast cell info here. I only wish I'd known sooner. Tc ... Not so dizzy anymore .. D

Hi again, So far so good. I just got home from visiting with my family and was eating several fibro pain and pelvic pain trigger foods without a problem. : ) Kow. Chocolate, tomato sauce and nuts. I'm taking 20 - 25 mg Wal-zyr spread out thru the day.. And 1/2 tsp children's benadryl at bedtime. I still have some throat and facial swelling at times but I think it was from probiotics. Oh and my oi improved too. I feel the muscles in my upper body relax when I lay down but I'm not constanty getting the overwhelming urge to lay down. My head's a little fuzzy but at times I'm almost back to my healthy cognitive capabilities. : ) I'm chattier than I have been in several years. Lol. I'm sure the caffeine isn't helping that. Thanks again for posting this .. Marcia

Thanks doozly, Ot, don't you just love that dizzy and doozly are having such an intelligent conversation. Lol. I'll reconsider a lower dose of Vistaril at some point when I have time to deal with the possible side effects. It sedated me to the point of not remembering most of my trip to Walgreens 3 - 4 days later. And I was driving. My Wal-zyr is 10 mg but I split it in half. I didn't realize it was from the same family as vistaril. Thanks. I'll keep in mind what you said about the drugs that help you for swelling. I'll have to keep these on hand. I'm going to boost my dosage today but only take 5 mg at a time. Since it's giving me an energy boost, I'll stick to taking it during the day. I'm pretty sure it's the corn starch because I've experimented with this various times. I bought ribose with corn starch, had infants iron with hfcs, etc and all made me hyper. Not that I mind right now. It's just a mild but marked energy increase and isn't making me jittery at all. Granted I haven't experimented with certizine on it's own yet to look for reactions. I'm not sure if Walgreens zantac has red dye. I see that it has iron oxide red but I didn't google it yet. Thanks for the tip on generics. I'll watch for that. I was in a drug (vistaril) induces stupor at Walgreens picking up my script for creon when I bought these. They were buy one get one 1/2 price. I'm curious about when and how doctors realize that treating for leaky gut via avoidance, probiotics, glutamine, etc. isn't enough for their patients. Not that I'd understand all the medical terms but I'd love to see this study. Eta. I was thinking that maybe this protocal shouldn't be considered an add-on to the standard avoidance protocal and might actually help leaky gut heal. Surely a digestive tract that's inflamed from other non food allergies and those which can't be determined or avoided would compromise healing. I never figured out all my food intolerances and some of them changed over time. Not to mention some are delayed so how can we figure these out. Thanks again. Marcia

hi doozly, I thought I'd pop in and let you know that last week I tried 25 mg Vistaril and it seriously knocked me out for 3 - 4 days. I felt like I'd had iv sedation. So that one's out for me. Now I'm trying 5 mg wal-zyr twice a day since I read zyrtec was good for swelling. I noticed that it gave me an energy boost but it is probably from the corn starch. Corn starch and hfcs do this to me. I see that it has blue dye too but I seem to be ok with a little dye. Increased energy is a good thing. So far I haven't noticed any significant improvement in my throat swelling yet. It hasn't been severe tho so maybe it's helping. I thought I'd increase the dose to 5 mg 3 times a day starting tomorrow. Then continue increasing it up to 30 mg a day if needed. Based on what I've read, this seems to be the way to go. Right ? I bought walgreens zantac but haven't tried it yet. I thought I read that we needed to see an improvement or was that we needed to verify we're ok with the h1 before starting the h2. Fwiw, It's interesting to see how many people had leaky gut with tons of allergies, tried to avoid them but ended needing meds or supplements anyway. There outta be a time limit for avoidance protocals. Thanks .. Marcia

Strictly avoiding my food intolerances, eating healthy foods (wahls /paleo diet), keeping my sodium levels up and laying down to relieve hypoperfusion. I'm curently trying allergy meds for swelling and possible vasodilation. Tc .. D

Hi, Are you referring to brain zaps ? If so I used to get these. When I first got on the web in 2005, the celiacs I met on celiac dot com said these were common for them. And like mine, they went away post gf. I'm not sure tingling is from the adrenals. It sounds more like a response from an allergy to me. Fwiw. My adrenaline surges are more intense than what you're describing. I get the feeling like I could and should run up a mountain or two. For some reason, I woke up like this today and it's still with me. I rarely get these. Tc.. d

Thanks for the list of meds you take. I already googled equate loratidine and equate zantac and they're gluten free. Hopefully I can get over there tomorrow. That's great that you noticed an improvement from your cleanse. I completeky understand the problems with parasite cleanses. I've been stuck at home most of the time with digestive symptoms. I decided not to get a pre packaged parasite treatment because of all my intolerances. I ended up getting the herbs from the bulk section at my local hfs. It worked out because it appears that black walnut hulls are either high oxalate or an allergy for me. I'm ok with the others except for the fatigue. I started with papaya seeds and had vertigo for 3 days until a freind reminded me to support my liver. Taking Himalaya Liver care eliminated the vertigo in an hour. : ) I love it when supplements work that way. I've been taking this one intermittently without any bad reactions for at least 5 years. Kow. Oh I bumped a thread here on dehydration and histamine. Did you have dehydration and if so did it improve on the antihistamines ? I know benadryl dehydrates me so I can't see how it would. Maybe the H2 does ? Thanks again .. D

More on mcad .. Tx .. D

Thanks lyn, That helps a lot. I'll pick up some claritin and take it at night. Then take it from there. I'd love to see your tapering protocals. Are they on dinet ? I tested positive for h pylori and a couple of parasites via a metametrix stool test late last year. My doc ordered clarithrymicin (sp?) and metronadazole (sp?). Later I used mebendazole. I started a home grown holistic protocal about 5 weeks ago because that same test said I had parasites of unknown etiology. It's papaya seeds, wormwood, clove, pau d arco, pineapple, bentonite clay, etc. I adding these in slowly. After about 3 weeks I saw worms, probably from cod, in my stool. I'd eaten cod with worms last year before noticing the worms. I had dry heaves about a week after that and saw my doc. I suspect but I'm not sure that the heaves came from taking a hot epsom salt bath. I got my body temp up to 103. I'd read that a body temp of 104 would kill parasites. I haven't tried it since. Haha. Btw dry heaves are a sign that dogs have parasites. My doc had ordered albendazole to be taken for 6 weeks total, on 2 off 2. But my pharmacy says they can't get it. I'm currently waiting for a new prescription to be ready at my pharmacy. I'll let you know how it goes. Fwiw, I've been tapering off the treatment for the last 3 days and I'm feeling better. It was really wearing me down.

Hi again .. Lol .. Ok so I thought since my nose wasn't running anymore, my eyes didn't water and itch, I no longer had constant phlegm in my throat and I wasn't itching all the time that my allergies were under control. Now I find out that you don't have to have all those other symptoms to have allergy problems. I started having anaphylaxis last year but it didn't dawn on me to start treating daily. BY Big duh on my part ! Thanks again for bringing this to my attention. So is there a logical approach to trying allergy meds or just try them all till you find one that works ? And do you know if holistic treatments work or do drugs work better ? I'd rather not waste any more time. And when I tried these a few years ago, I remember some, but can't remember which ones, knocked me out. Does this go away after awhile if you keep using them ? Fwiw, I tested positive for parasites last year and I've seen parasites linked to allergies. I'm new to this info so I'm not sure if it's true. It could've just been part of a sales pitch for all I know. This is when the throat swelling started tho. However, I'm treating these and it's wearing me out. Tc .. D

hi again. I posted that article on mast cells and pelvic pain here. I made an attempt to break it up into more readible form on www.glutenfreeandbeyond.org if you're interested. I'm very tired tho so I can't vouch for how accurate my editing was ... tc ... d http://forums.dinet.org/index.php?/topic/21254-highlights-of-the-international-pelvic-pain-society-annual-meeting/

I'm not sure if men have similar problems but this info brings together the info on allergies and pelvic pain ... I'm not sure what to make of the dates. tc ... d http://hcp.obgyn.net/pelvic-pain/content/article/1760982/1977062

Lol. Issie .. I can so relate to doing myself in .. I got much better, but not cured, after having a 2 hour seizure that started at my doctors office and ended in the ER. That had to have been one of the most embarrassing and scarey moments in my life. I'm not sure what to make of avoiding whole groups of foods. For instance only tomatoes and bacon cause my fibro pain to return but I'm ok with other foods in those categories. I see this with other foods too. I just learned a few days ago that mast cells have been implicated in pelvic pain like vulvodynia, ic, etc. And for 5 ? years now I've been crediting the pain to oxalates because that's what I'd read. And when I went on the low ox diet for kidney stones my pain went away. I have the article but can't give you the link from my tablet. I'll look later. But at any rate, I get "v" pain from certain high oxalate foods but not all. Cashews, peanuts, chocolate for sure. But I seem to be ok with brazil nuts. I' still playing with this tho. Certain bacteria degrade oxalates so that helps too. So do you know if mast cells are food specific like gluten antibodies ? Gluten falls into several categories but I don't react to all of the foods in those categories. Well other than blood glucose wise. All grains are bad for me for this reason. Tc .. D

Congratulations. Great info. Thanks. I've been looking at this lately too. Mast cells are implicated in many of my diagnosises. Over the last 7 years, I've systematically removed the foods and chemicals from my environment that I know I have problems with but I still have allergies everyday. Granted, I'd feel horrible if I was still eating gluten, dairy, soy, hfcs, coffee, chocolate, etc. The chemicals and / or proteins in these did more than cause an allergic reaction. Esp gluten. I get gluten antibodies from this. Fwiw as sensitive as I am to gluten my serum tests are normal. My stool tests show my reaction accurately. This appears to be normal for a lot of people esp since they chsnged the gluten antibody test to be LESS sensitive. I was wondering if you'd looked for the root cause of your mast cell problems ? I know leaky gut is related to tood intolerances but I'm not sure what else is. I'm still going to use meds for now tho. Tc .. D

Hi naomi, I agree that the author of thus article was promoting exercise as a cure for pots. And the author is saying that laziness can lead to pots. I was looking for studies that prove laziness leads to a person getting a condition where their hr jumps 30 pts after standing still for 10 minutes. To me this test indicates hypoperfusion. But I could be wrong. Pots is used in two ways. To describe a hr jump after 10 minutes of standing and to describe a wide variety of symptoms people with dysautonomia have. I've found that most of my symptoms that would've been under the pots group diagnosis were from food intolerances / allergies. Tc .. D