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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Triggers >> New contruction http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1354274204 Message started by PamH on 11/29/12 at 23:16:44

Title: New contruction
Post by PamH on 11/29/12 at 23:16:44

I have to avoid new contruction like the plague. Even premedicating doesn't work. We joined a small group at church and ended up meeting in a new home. Did it once for a few hours, even with benedryl, I felt bad for 2 days. We dropped out of the group. I have read that it takes 6 years for all the VOC's the burn off.
I am unable to go into our local walmart...I always figured it was mold, but the building is not old and my husband and I realized that a few years back it was remodeled.

Does any one else have a hard time with the new contruction or newly remodeled?

Title: Re: New contruction
Post by Starflower on 12/03/12 at 04:21:07

YES >:(

I've been triggered several times by newly-renovated spaces. I suspect one of the culprits is latex (in the carpet, for example), but I've read that a lot of people who are allergic to latex are also allergic to the chemical accelerants used to make it... which are present in a lot of other products. Silicone spray (used to grease the rails for garage doors) sends me right into anaphylaxis and it lingers in the space for several days. UGH. Found that out the hard way.

Incidentally... at Target I have to walk quickly past the aisles with products like air fresheners, cleaning products, etc... I'm fine in the rest of the store. Mine was also renovated a few years ago.

On a happier note... a few months ago I painted my office at home using an "allergy-friendly" zero VOC paint (bought it at Lowe's... I think it was from Olympia). It didn't bother me at all :)

Heather

Title: Re: New contruction
Post by PamH on 12/03/12 at 05:41:44

Starflower,
I'm glad to see I'm not the only one! I noticed no one had commented, and I was like...well I guess I'm the only one. :-[

Oh no, did you use the silicon spray?
Interesting that you read about that...I tested positive for some ingredient used to make latex, but I'm not allergic to latex.
Are you allergic to latex??
I am running past those aisles as well! ;D I usually have my husband or daughter get anything on "that" aisle!
Carpet IS a biggy, we have no carpet in our house. New or old.
Glad the paint worked out!

Title: Re: New contruction
Post by Doozlygirl on 12/03/12 at 12:35:45

Pam,
Me too! This is ths stuff well known in the multiple chemical sensitivity and environmental sensitivities/allergy world.

I am tracking down the reason why my body can't tolerate these things. I am ok with pure, natural based products but react to various synthetic chemicals. Due to the mast cell connection, I am much more aware of synthetic chemicals in nearly everything in this world.

As you are aware form my many posts on here, my dots started connecting with dyes, then grew form there and my longtime reactions to MSG, aspartame, sacharin, phthalates, sulfites, and many other additives is directing me to look at my reason why my body can't process those synthetic chemicals.

New contruction is riddled with all things synthetic: VOCs, silicone and latex are places to start, but there are scores of others. Formaldehyde, plastics, likely PVC/phthalates related adds dozens. Consider the flame retardent, stain resistant sprays on furniture, carpet, drapes, etc. Synthetic chemicals rule the world at this point.

There is a solid anti-synthetic chemicals movement going on right now in the US, which I never paid attention to until recently. Within this world, there are stories of others who have been able to better tolerate living in our environment. I am intrigued by the biochemistry of what happens in our body. I am convinced I react to so many things because my body chemistry is broken and stuff gets backed up and makes me ill.

As I make progress, I will continue to check in her and gives updates.

Lyn

Title: Re: New contruction
Post by PamH on 12/03/12 at 13:40:18

Lyn,
I read your post to my husband and he said "that sounds like you"! It does. I agree something is not working and seems broken not to be able to rid of these things in our bodies. I have found for some odd reason, that a epson salt bath for 20 mins does make me feel better! So I do this every day. I feel it is cleansing some pathway that has stopped working. (sounds a little crazy, but I don't question what seems to be working at this point!) :D
Please do keep me updated on your progress of understanding.

Title: Re: New contruction
Post by Doozlygirl on 12/03/12 at 15:28:33

Pam,
I've been posting similar comments on various posts and few have responded. I guess I take it as those folks are just not ready to consider that these synthetic chemicals are part of the equation why we are ill. Since you asre interested, I'll share a bit of how I got to this path, so you may pick up on some cues in your own situation.

I didn't come to this lightly, as my specific mast cell related triggers are ALL synthetic chemicals, so I guess once I figured that out, it was easier for me to connect those dots. Where it sounds like you have issues with things found naturally in foods, intolerances to both can occur from broken chemical pathways. So I went on a mission to learn more about these synthetic chemicals, so I could figure out what to avoid and potentially identify where my biochemistry is broken. This lead me to better understand the items on various mast cell degranulator lists, as the most appropriate descriptor terms used may not be used on those lists, so it was tough to make those connections. For example, on one list it says Azo dyes, when in fact you'll notice that I always reference them as FD&C or D&C dyes as those are the ingredients listed on the back of products. I used that logic as I proceeded.

Once I could determine what triggered my symptoms, I began to look for patterns. I started with various meds and supplements, them moved onto other personal care products. Pam, I know you have done this already from a sals perspective, but I wonder if you've removed all other mast cell offending items?

Once I had those pattens in mind, I could determine that sulfa/sulfur is an issue. Interesting but many supplements have sulfa in them, so one more connected dot. Looking at my issues surrounding my period I know estogen is an issue. And of course there is histamine and norepi and epi and choline with my mast cell and dysautonomia symtoms. My high mediators all point to high inflammation, as do my issues with casein, wheat, and yeast.

While I've dabbled with natural and holistic techniques and diet in the past, but it just didn't sustain any real progress, until I began to connect all these dots and take a real hard honest look at things I once thought I tolerated. I also relized that my body is wasting alot of energy, nutrients and limited functioning to process these synthetic chemicals, taking away from being able to process my own hormones and cofactors so I am resolved to give my body a vacation, and have tightened up my environment and exposures. I now know I can do this for a few more months because I am positive with the help of experts I can fix my broken body chemistry.

Cutting to the chase, I've learned alot on how the body actuall works from a biochemstry perspective. Inflammation is BAD and any one with as much intolerances/allergies, histamine and other mediators floating around HAS WAY TOO MUCH INFLAMMATION, if you realize it or not. Our foods are bound to contribute hugely, so I have begaun to integrate non inflammatory foods and stop eating the inflammatory ones.

Where there is inflammation, there are toxins, unmetabolized hormones, cofactors and nutrients and things that clog up your body's functions and you have to get out of your body. There are multiple channels of eliminations to get this stuff out: sweat, uringe, feces, breath, lymph, etc. So each of these channels must be open and your body needs various nutrients to run those channels with cofactors and enzymes and other molecules. What ever you take in must be converted into an active molecule and moved to the correct spot and moved or changed hundreds of times before you get stuff out. And there are hundreds of these chemical equations that have to happen in order for one to be well.

Those epsom salt baths make you feel better, because they not only give you magnesium, it doesn't have to be processed thorugh your liver when it comes from your skin. Magnesium is necessary for hundredes of those chemical equations to work, the baths also help you detox out through your skin and lymph, clearing out the low hanging fruit so your body can tackle other functions. Keeping your colon working regularly is another must. There are scores of ways to support these functions, without use of synthetic chemicals, medications, and even supplements. Directed dense nutrition is the best way to support our bodies, and unfortunately this is tough with all of our intolerances.

So my best advice right now is to lower inflammation and heal your gut, both really critical steps in repairing those broken chemical pathways. Once I can share specifics, I will post more, if you'd like.

Keep on Keepin' On,
Lyn

Title: Re: New contruction
Post by Joan on 12/03/12 at 16:59:56

It seems to me that synthetic chemicals are toxic to everyone, not just MC people. Some people just have less reaction, probably because their bodies can clear those substances better than ours.

My body doesn't seem able to clear scents. I'm better than I used to be, but the detergent and candle aisles in the grocery store are the worst! (Well, that would be other than the scented products store at the mall.) I do notice I can tolerate them more when I'm not flaring in general. I had a problem with someone in a class I was taking who had fabric softener in her clothing. It made me feel weak and faint. I moved away from her and glugged down a lot of water and that helped. Antihistamines don't seem to help with scents, but it does seem to back off first when I'm doing better.

There are so many chemicals in new construction, including glues and binders to hold wood products together, outgassing of carpets and high VOC paint, etc. It's rough to be around building sites!

Title: Re: New contruction
Post by MarciaB on 12/03/12 at 23:35:05

I've been sick / too weak to feel healthy while standing up for 23 years so I'm not sure how I'm supposed to react to these chemicals.

I was feeling toxic in the scented or soap sections of stores, in the plywood section of Home Depot and anyplace that's musty but it's not been as bad since changing my diet. My rhinitis stopped about 6 years ago but my oi / weakness in this environment is just as bad.

I typically don't feel the need to leave tho unless I can't breath. Musty places are my worst offenders.

Fwiw, I'm assuming many of us are either struggling to keep up, resting or researching our symptoms and meds. Researching this stuff is grueling on it's own. So lack of responses can just mean we're too pre-occupied, esp this time of year. I've only bought 1 gift.

Tc .. Marcia

Title: Re: New contruction
Post by BlueSkies on 12/04/12 at 03:02:26

Hi MarciaB,

I am also chemically sensitive, and have had environmental illness for over 30 years. A LOT of people are chemically sensitive! So you are not alone!

I agree with Lyn's description of new construction chemicals. New items "out gas" chemicals, and that can go on for years for some things.

In our home, we try to avoid extra chemicals. We're careful what we bring into our home. Stores are so full of chemicals, they can give me brain fog really fast no matter what aisle I'm in.

In general, new things out gas! Unless they are all natural. Like, new furniture may have press board in it = glue, formaldehyde, not to mention the varnishes on the wood. Plywood is full of glue & formaldehyde.

I do better with things that are second hand - unless they've been around smoke or perfume.

BlueSkies

Title: Re: New contruction
Post by BlueSkies on 12/04/12 at 03:10:34

Lyn,

I am very interested in learning how to avoid inflammatory foods, and especially how to heal your gut.

I have just this year been learning about leaky gut. I checked out some functional chiropractic doctors who specialize in diet and claim to heal your leaky gut, but their prices were way out of my reach. And, now I am beginning to learn that the foods they were using would probably be bad for masto. (like - going on a fermented diet for several weeks!)

Anyway, anything you would like to share on this topic I would love to hear!

Thanks!
BlueSkies

Title: Re: New contruction
Post by MarciaB on 12/04/12 at 04:29:38

This discussion is explaining why I feel so much better outside in fresh air. I feel best either the beach or in mountain air.

It's weird going from a 15 year cfs dx to being a celiac with ataxia + ? and now treating for mast cells.

So what r people doing to tolerate these chemicals so we don't feel bad or have to leave ? I know to use children's benadryl if my throat itches / allergic reaction but how do we counteract the chemical intolerance ?

Title: Re: New contruction
Post by MarciaB on 12/04/12 at 04:43:30

Hi blueskies,

After a few years of eliminating the common food intolerances, gluten, casein, soy, etc I wound up on the paleo diet then switched to the wahls diet in jan 2012. It's not uncommon for people to have problems with grains and legumes which leaves us eating whole foods.

We all have different intolerances and needs so I use diet plans as guidelines. Dr wahls includes all the healthy foods I've learned about over the years. Her ted video explains it.

I could eat fermented foods until this year. Now I just make coconut kefir with metagenics probiotics. So far I seem ok with it. Kow.

Tc .. Marcia

Title: Re: New contruction
Post by iamnotalone on 12/04/12 at 05:31:38

Not only New construction;
Also Old buildings can harbor many triggers for us. I am convinced my former workplace contributed to my allergies, & bringing out my masto.
It was an old school built in the 1800s. Imagine, standing water in the crawl spaces & basement, leaky roof, black mold, old dirty carpeting, & probably some asbestos... Thank God they closed that building (after I resigned due to masto, as Murphy's Law would have it).
When we had the carpeting in our bedroom replaced with laminate, I swear it took months of airing it out just so I could breathe comfortably at night. My husband couldn't smell that "skunky" smell.
Blueskies, have you checked out the Low Histamine Chef's site ? Lots of good info. on there.
take care ladies :)
lori

Title: Re: New contruction
Post by BlueSkies on 12/04/12 at 08:58:53

Lori,

I looked the site up - thanks for the suggestion!

BlueSkies :)

Title: Re: New contruction
Post by PamH on 12/04/12 at 09:00:26

Lyn,
I appreciate all of the research you have done. I feel as if I am missing something. Because I have eleminated so much from my diet. I don't eat any thing with any aritfitial colors, flavors or any chemicals of any kind. I only drink distilled no mineral added water ( an all natural virgils cream soda every few days) I'm on a low histamine, low salicylate diet, very rarely have dairy and yet every morning I wake up swollen, eyes, face and hands. I know Joan has mentioned that we have the most histamines in the very early morning and maybe that is my problem. I am on an prescripton antihistamine in the evening, perhaps I should take it closer to bed time.----Anyway I don't know what else I can cut out. I use no make up and I use only Johnsons and Johnson's Head to toe wash as soap and as shampoo, I just recently started using toothpaste, I have been using baking soda(it is really hard on the enamel) I don't use any fragrance of any kind, none in lotion, perfumes, soaps, deoderent, or laundry detergent. I don't have any kind of airfresheners. In fact I think bleach is the only chemical that I use.

I think the only other place I could cut out things would be to buy organic meats. Right now I buy my meat from Sams club, but no matter what I buy I read all ingredients.
So do you have any advice for me? Am I missing something big and just not seeing it?
I dont even have living room furniture because we had bought a new sectional made from pleather and I couldn't stand to sit on it. So we moved it to the family room. (I don't really go in there) I don't know what to buy to sit on...someone said they did better with used, maybe I should look into something that has been used long enough that the VOC are gone!
So thanks for any advice!

Title: Re: New contruction
Post by BlueSkies on 12/04/12 at 09:28:30

Hi Marcia,

I'm on an 'avoidance' diet - in that I avoid whatever foods triggers me. Most foods do. The ones that don't, do the next day. My husband calls it "the allergy of the day". I need to go back on a 4 day rotation diet, but I've been too brain challenged and exhausted to re-figure one out to fit me, yet. This is not total neglect, just having to decide each day which 'fire' is the most urgent that day. :)

The Paleo and Wahls diets are new to me. Thanks for sharing what you have found that works. I need to tackle the histamine list, and some of the other no-no's I'm learning about.

What I do some days is just skip food for as long as possible! In case anyone is wondering - this is not the best idea! Hunger is another trigger for me. Duh! (But, it does work great for a few hours, which is why it's so tempting to do.)

So, I think I need to move these food issues higher up my priority ladder!

Well, come to think of it, reading up on food issues and suggestions on this forum is a step in that direction!

OK, I just found the Wahls homepage - this looks very interesting, and goes along with some other things I have been learning recently about eating more nutrient dense foods.

I just realized why I haven't set up a 4 day rotation for myself again - I keep thinking "I will do this after I learn about x, y, z...
I need to just set it up with what I can already tolerate, and then modify it as I learn more. Instead of the other way around.

Sorry about all the wordiness - I ramble more when I'm starting to crash...
I think I better go eat, LOL.

BlueSkies

Title: Re: New contruction
Post by Doozlygirl on 12/04/12 at 11:31:41

After rereading my post from last night, I see I was on a rant, and regret posting it that way. I am on nuritional focussed pathway now, where instead of figuring out what individual things I react to , so I can avoid them all, I found some ways to connect the dots back to my messed up biochemistry.

After I found a sweet spot with my meds and lifestyle for 3 weeks, I crashed, and crashed hard. This got me to look at my overall load. Since I avoid many if not the same things as you do Pam, I didn't know where to go. Until I stopped my meds, cold turkey one evening and I was able to awaken the next day, first time in 3 weeks. I've had an allergist in my past recommend stopping all meds in a medication vacation and add them in one day at a time. I don't adivse this for any of you, but when I did it, it immediately lightened my load.

I believe our load is filled with it all, histamine foods, meds, smells, synthetic chemicals, salicylates, tyramine, etc. Then it dawned on me. I have to focus on finding out how to better process them verses just eliminating them.

What I am going to say is contra conventional medical wisdom, but coming from a healing perpective taken from natural and holistic healing fields. There is stong belief that the vast majority of illness stems from leaky gut, altered digestion and body ecology, poor nutrition, altered pH, blocked elimination channels, methylation issues, inflammation, malabsorption, toxic overload, imbalanced hormones, clogged basic functioning, loss of homeostasis, and the body's inablity to run. It's all very complicated, but there are fantastic sources out there that have figured out how to untangle all this.

I personally have tried scores of conventional and natural approaches to address that long list, but never could grab that one string to pull it tight. Growing numbers of us in chronic health forums are tuned into the body chemistry side of this and finding that we react to so many things, because we have too much inflammation, our t celll and b cell systmes in the immjune system are inbalanced, and we can't get our body the raw materials it needs to do its job or get rid of the waste properly.

Every medication has unattended consequences. That's why those on H1s are so dry, H2s alter the body's GI system by changing pH, which then alters the immune system, by promoting leaky gut, food allergies, malabsorption, and other GI related functions. Antibiotics will change the body's ecology, upset the ratio of good and bad bacteria and lead to yeast and other overgrowth. Statins cause a depletion in coQ10, a factor necessary to use energy in the cells, this is why so many get muscle loss and pain.

Lastly, those of us who have various genetic predisopostion (mutations in various genes), this can explain or at least point to why each of can't tolerate certain things.

The cenventional mast cell world is focussed on taking more meds and eliminating more triggers to reach stability. I have been looking outside of this approach for ways to be able to tolerate more. I did this years ago, when I was allergic to over 25 foods then a muktifactorial treatment approach, months later, months later i was allrgic to only a small handful. I had to address my gut issues, supplement with appropriate doses of the correct forms of various basic buidling blocks, and elimimate exposures until my immune b cells were balanced with my t cells. I had to expand my diet to brand new foods to maintain my expanding needs dietary needs.

This is so hard to do when the conventional approach to treating mast cell disorders is so limiting in getting us the basic building blocks and the raw materials we need to properly function. Unfortunately, it is NOT about just taking a handful of vitamins. The path I am now following is about finding out where your biochemistry is broken then fixing at at the molecular level. This will clear those broken detoxification pathways, get rid of toxins, support the mitochondria to make more energy, balance the immune and neurological systems, support every organ and pull those essential strings of our tangled ball of metabolic fubar.

Instead of asking yourself what do you need to cut out, ask yourself what do you need to add or change? In a few mintues, I'll post a who different approach to fixing broken biochemistry. Let me know if you see yourself in this scenario.

Lyn

Title: Re: New contruction
Post by Doozlygirl on 12/04/12 at 11:43:26

I'm not advocating one specific protocol, but there are numerous approaches to reversing illnesses out there. Dr Amy Yasko's protocol reverses Autism and other disorders. Dr Rich Van Konynenberg's approach reverses CFS/ME/FMS. Dr Terry Wahl's protocol reversed her own wheelchair dependent MS. Other protocols reverse cancer, Lupus, and a host of other illnesses.

Dr Kendal Stewart has taken thses same principles and developed a protocol to address neuro and immune disorders, which has helped kids with autism and is gaining ground in other disorders. I am sending the link to the first of five 15 minute clips of a talk he gave in Charlotte last year to an autism minded audience. But his talk covers neuroimmune recovery steps as well. There is no magic bullet to all this, but with the proper steps many are recovering from their messed up metabolism. Why couldn't this work for us? Well it has helped those with MCAS. I had a chance to attend a wellness conference where Dr Kendal Stewart spoke on this topic and even speak with him afterwords. He immediately pointed out inflammation as our biggest enemy, then said we have to mork on methylation. This is explained in the clips.

http://www.youtube.com/watch?v=J5m2jfiSnN4&feature=related

Check it out and let me know if any of this rings true with you.

Lyn

Title: Re: New contruction
Post by redbird on 12/04/12 at 12:05:09

hummm and hummm and more hummm

in all my reading...studying and goodness knows I am not the smartest cookie in the jar but I have never seen anything that suggest that something can reverse masto...have I missed a step some where..not trying to make a fuss but if it is somewhere please let me know...
lots of doctors have different opinions etc...and I am glad that there is help for some people but I have found the best way FOR ME...is to find a doctor who knows masto and educate myself as much as possible..

redbird

Title: Re: New contruction
Post by Doozlygirl on 12/04/12 at 13:01:47

I'm not saying this is for everyone, but if you consider some of us may not be able to breakdown and properly metabilize histamine, this could be a missing link for some. COMT is a gene responsible in part for histamine metabolism. I recently learned I have a genetic mutation in my COMT gene that can be overridden with specific nutrients to clear the blocked pathway and reopen it. THIS IS HUGE!! We know histamine peaks between 2-4 am in the body, so many hours after eating our last meal. What is happening here? As my body breaks it down something is awry, so the first place to look is histamine metabolism. And what about the other stuff we may not be able to break down?

DAO is the enzyme responsible for 1 of two pathways in the metabolism of histamine. Too much histamine is one explanation why some of us can't tolerate histamine foods. If you lower the threshold, then symptoms subside. In Europe, doctors are using DAO supplementation to help break down histamine. This in itself allows some to have better histamine tolerance.

And the foods that contain histamine also contain great benefit to the body with their other nutrients.

As I said others may not need to look outside of conventional mast cell treatments, but some of us may be looking for additional ways to connect our dots.

I see a mast cell specialist on the TMS Advisory board, one who encourages me to keep filling in my missing dots. I'm educating myself as much as possible which is what lead me to the possibility of fixing broken body chemistry as a pathway to wellness.

My conventional docs don't know about autonomic neuropathy or MCAS, as I've had to be my own advocate and do my own resarch, then present the likely possibilities, which lead to these diagnoses. Since none of my current docs are well versed in epigenetics and nutrigenomics, I am just loooking out of the conventional MCAS box to educate myself, since I maxed out the MCAS stuff. I am finding great promise and actual cases of reversing known neuro and immune disorders through epigenetics and nutrigenomics. I am so convinced what I am finding, I am paying it forward and sharing what I am finding in case others are looking to do the same.

Lyn

Title: Re: New contruction
Post by Joan on 12/04/12 at 18:22:25

Is there anything to do to fix the Kit D816V defect?

Title: Re: New contruction
Post by Doozlygirl on 12/04/12 at 19:26:29

Joan, haven't found that one yet in my reading, but I have learned I have a significantly higher chance of a MPN , myleoproliferative disorder, which is where mastocytosis is classified in the conventional medical world.

There is lots of similar chattter in the EDS, MS, autism, CFS, FMS, cancer world regarding protocols to override genetic mutations with nutrition/supplementation.

Will keep an eye out for mention of the 816v cKIT mutation.

Lyn

Title: Re: New contruction
Post by PamH on 12/05/12 at 03:32:17

Lyn,
I believe that something in my body got "switched" off. I may have had symptoms for years but one day I woke up having anaphylaxis and it hasn't stopped. It is just being contolled. It is exhausing living life knowing that if I inhale or injest the wrong thing I will be dealing with it.
I know our bodies were created to work and when something stops working other things stop working. I am very interested in your discoveries, however can not stop my meds due to my anaphylaxis. But I am interested in adding things to minimize them and maybe one day eleminate them! Just like the epson salt baths, that is doing a physical job that my body stopped doing. It does need help!
I really want to understand more about why our bodies stop processing histamines and what to do about it rather than fighting the histamines it does make more sense to help the body process them!
Loved the videos and it all makes so much sense. It was useful as well because my oldest has Aspergers and fit much of what he was saying.
I fit in several catagories too... low vitamin D I even have high MCV like the lady in the last video(case #2) None of my doctors wanted to address it just told me about it-so helpful. :-/ I know that I have tons of inflamation. :-[

I would start today on the vitamin suppliment. Can you purchase these or they only prescription?
Thanks!

Title: Re: New contruction
Post by PamH on 12/05/12 at 05:12:17

I found them:
http://www.neurobiologix.com/health-supplements-s/34.htm

Lyn, have you started or tried any of these supplements yet?

Title: Re: New contruction
Post by Joan on 12/05/12 at 05:44:58

Lyn,

The issue with the gene mutation is that the mast cells are not dying as quickly as they should. They hang around so long that SM patients have way too many of them, and they don't function correctly either. Normally, there are cells in the body to search and destroy abnormal cells, but they aren't recognizing these mutated, abnormal cells. I haven't read enough to know which cells' job it is to kill abnormal cells, but they're not recognizing abnormal mast cells and taking them out. And, mast cells usually have a lifespan that ends with apoptosis, programmed cell death, and that's not happening at the correct time that normal cells kill themselves.

I guess if we could figure this out, we might be able to cure cancer!

Title: Re: New contruction
Post by MarciaB on 12/05/12 at 10:03:53

Is it possible that our bodies just over produce mast cells, etc to the extent that our bodies can't clear them ?

I'm asking because my body really over produces leukocytes when I have urinary tract infections. Twice now when passing stones, I've heard that I had a bad infection. The thing is that within a few hours after I've passed it my body calms down and I feel fine again. Does that mean that these have cleared ?

And I over produce antibodies to gluten. I get high readings from cheating with a few bites of a "gf" treat.

I also have high antibodies to at least 3 viruses. I even over produce insulin.

I never understood what it meant but I was told that my immune system is up regulated. Does having over active mast cells fit in
here too ? No wonder I'm so tired .. Lol ..

Title: Re: New contruction
Post by iamnotalone on 12/06/12 at 04:35:10

Much of this makes sense !
I am having a "brain foggy" day, but I was able to process the majority/gist of it :D. Last nite, I saw a show on PBS. It was a woman named JJ Virgin, who had written a book called The Virgin Diet. She is a "health & fitness expert". Her basic plan is eliminating 7 things from our diet to reset our bodies. I can't remember all 7 (go figure ::)), but the rest are sugar, dairy, eggs, corn, peanuts, gluten & ?. Anyway it made sense when she explained how these foods lead to leaky gut/inflammation/brain fog/etc.etc. I eat many of these things every day :( ! I am good about taking my meds every day, but watching what I eat is another story... One of her strategies is not to think of it as "depriving yourself", but as how you are informing, or reprogramming your body.
I have decided to try it as best as I can. It's so much easier to eat unhealthy foods than healthy ones. They take more time & energy- but maybe I'll have more in a few weeks ?! :-?
lori

Title: Re: New contruction
Post by iamnotalone on 12/06/12 at 04:54:19

I checked it out;
Soy was #1 on the list of the seven foods to avoid. You can google the info. that explains how/why these foods are so bad for us. But most are self explanatory. I am going grocery shopping now so I don't starve. ;D
lori

Title: Re: New contruction
Post by PamH on 12/06/12 at 10:13:51

Lori,
Eggs D: I thought eggs were good for you?? I usually have them once a day. Really truely I'm running out of things to eat here! I get the others things like sugar and soy, and I know dairy is not the best but eggs...I'm going to go sulk! :'(

Title: Re: New contruction
Post by Joan on 12/06/12 at 14:02:02

It's all very individual. There is no one-size-fits-all diet. If there were a diet that would make everyone healthy, we would already know about it and doctors would prescribe it!

So sad, as it would be a lot easier than each person trying to figure out what they can tolerate. If someone says everybody can reset their immune systems by diet alone, run the other way. It's just another attempt to part you with your $$$. It might help some people who are sensitive to only those things they eliminate, but it's certainly not a cure-all.

If I stay pretty much on the low histamine diet, take my daily meds on schedule, take supplements that help GI problems (probiotics, l-glutamine, and turmeric), my digestion is relatively normal. Stress can throw everything out the window, though.

I get a lot of information reading about nutrition and supplements, but medical journal articles and other published research are the mainstays of reliable information about digestion and MC disorders. "Leaky gut" is a disorder of the mucosal lining in the stomach and GI tract. Medical research has shown benefits and GI healing from probiotics and l-glutamine. Some articles name the exact probiotic strains that can help these problems.

Pam, if eggs don't bother you, there's no reason to eliminate them. If you're not sure, don't eat them for a week to 10 days and then eat them a few times in one day. You'll know within a short amount of time whether they're okay or not.

Title: Re: New contruction
Post by bongaan on 12/06/12 at 18:29:34

This is why I don't like antihistamines, the only thing that it does is ease symptoms, so in the end people tend to eat things that they couldn't before because they are supressing the symptoms and not because their body healed. So all they do is cause more and more histamine which cause more and more inflammation and all this inflammation slowly but surely degenerate various systems and organs in your body.

Doozlygirl, you are talking my language!

Each and everyone in this forum could benefit from doing a proper GI panel which tell you the amount of GI inflammation and dysbiosis. And then to start and rebuild your gut lining by reducing inflammation, correcting the dysbiosis and calming down your imuun system . People like Doozlygirl are currently able to eat many things she weren't able to eat before and it's not because she drinks antihistamines, it's because she is healing her gut.

The bottomline is that if you were not born with a MCD then something broke along the way, if it broke then the simple logic is that it was fine before it broke and there is always a possibility that you could reverse some of the damage. Maybe we don't know how yet, but starting to reduce gut inflammation is a good place to start as the gut and the immuun system is very closely related.

Title: Re: New contruction
Post by Doozlygirl on 12/06/12 at 20:44:52

Hi all,
I appreciate the thoughtful discussion here. Lots to respond to, which I hope to catch it all. If I miss something, please repost the thought or question. Sorry for all the typos in my previous posts in the thread. I'm horrified to read those pages.

Pam, it is likely a combination of various switches, some off when supposed to be on and some on when supposed to be off. I believe this a part of the equation why we all have such varied symptoms, reactions, and medication/supplement/environmental senstitivies. I keep reading stories of one day I am fine then one XXXXXX and the next day I am flat, can't function. Or I slowly lost my ability to function. I see myslef as needing to do manually what my body can't do and everyday is an adventure to figure it all out. I suspect others feel the same thing.

Pam, I don't think stopping meds cold turkey is the answer, but I am just testing my theory that my meds are contributing to part of my symptoms. I looks like the histamine issue is a secondary issue.

I am studying folate and B-12 metabolism, glutathione metabolism, and methylation in general. This is oversimplified but we are so reactive to everthying because proper methylation is required to make t cells. If there is not enough methylation and not enough t cells, then B cells take over. B cells (which account for mast cell hypersentivity, immune responses, asthma, etc) have taken over t cells, so major immune imbalance. Once that balance is restored, then our hypersensitivity goes away and we can tolerate more and can use less meds, etc.

As you found, the supplements can be ordered online without a script, but I would caution against just starting supplements without knowing what methylation defects you have. I am considering on starting the neuroimmune stabilizer, as Dr Kendal Stewart told me this would help me lower my inflammation and calm my mast cells prior to seeing a local naturopath/chirproactor he recommends.

I did get to sample a dose while at that conference and It cleared my brain fog and gave me goood energy within 20 minutes of taking. It does contain red beetjuice and goes on red, but dries clear within minutes. Can't remember what other ingredients are, but need to check out further. I want to also make sure that I won't trigger other issues with my known methylation defects.

Lyn

Title: Re: New contruction
Post by Doozlygirl on 12/06/12 at 22:21:28

Joan,
I am reading that the gene mutations in methylation are somehow different than genes, such as BRAC1/2, etc, so wonder where cKIT fits in. Killer t cells are immune cells that seek out viruses, bacteria, cancer etc and perform phagocytosis, so i wonder if these are the cells responsible for seeking out mast cells at end of lifecycle.

Marcia,
I can't answer your question with red cells, but here is a silmilar thought. Someone can make too many red blood cells. They can also make the correct number of RBCs but either clear them out too early in the spleen or not clear them fast enough. RBCs half life is 120 days. I bet there are similar corresponding scenarios with mast cells. And yes, an upregulated immune system and hypoersensitive mast cells fits in here with methylation issues, starting with MTHFR and likely other genetic mutations.

Lori,
I am not familiar with JJ Virgin's work, but I taped all the PBS health topics, after hearing my friend is on her elimination diet. I believe the last one is soy. Oh I see our next post.

Pam,
There are scores of diets out there and none of them are meant for everyone. This list of 7 from JJ are likely based off of the top 7 ingredients likely to case allergies/sensitivities or inflammation. But I feel there are so many variables.

My reading is pointing to gluten and dairy as extremely inflammatory for everyone, but when you read about all the synthetic chemicals, pesticides, herbacides, antibiotics, growth hormones, and GMO materials in the production of them, then it is not a stretch to make that connection. But if you are ok with casein, which is dairy protein and use organic grass fed butter and make ghee when necessary, then I'd be ok with that. Ice cream, yougurt, cheese and sour cream could be a problem. And that's not even considering the histamine connections. If you have lactose intolerance, then staying away from milk, ice cream, etc would be helpful. I personally choose almond milk.

Gluten is evil due to fact all wheat is GMO, has much higher gluten content that wheat 25 years ago, and NOBODY can process it. It is also likely to have mold and aflatoxin issues. Also now learning that fortified pasta, crackers and breads with folate is likely a issue for 30 percent of the populaiton with undiagnosed MTHFR methylation issues. Can't win!! :(

Sugar is way better than articial sweetners, but only if less than 6 teasoons a day. But sugar feeds yeast, so double whammy there. Corn and soy in the USA is nearly 100 percent GMO - pure toxins! Peanuts are on list due to severe IgE reactions in general public. And eggs. Some eat duck eggs, or buy from organic farms, so limiting chemicals.

This elimination diet is to see if you react to those things. At one point I was diagnosed with nearly 20 something food allergies, most of them were low grade. My brilliant allergist wanted me to rotate my foods and only eat them twice every 4 days, so I kept my immune reactions limited.

I believe it is MORE important to make sure you have a broad array of nutrition in your diet. From what I am reading, I believe dense nutrition and directed supplementation, directed to my specific needs (not medicaitons or surgery) will help me correct my broken biochemistry. I'm reading that inapproapriate dose, form, route, etc can muck things up. Soon, I plan to test to identify actual issues in my gut, so I can properly treat and give exactly what I need.

Bongaan,
Thanks for the kind words. What are your experiences. What GI testing have you had done? Check out the videos I posted about on neuroimmune disorders by Dr Kendal Stewart recently. You'd properly find value in the information.

Lyn

Title: Re: New contruction
Post by MarciaB on 12/06/12 at 23:35:55

I've been seeing an integrative / functional doctor for 4 years now so I've had plenty of stool testing, nutrient tests, saliva, etc etc to help determine the status of my health.

Even after 7 years of eating a healthy diet, treating for abnormal labs, and eliminating most of my health problems, I responded to taking allergy meds. I just started looking more closely at contact allergens tho. Things like my dish soap, laundry soap, toothpaste, air quality, shampoo, etc etc. These were gf but not toxin free. I'm stuck on this planet tho so there's only so much I can control.

I treated my nutritional deficiencies with supplements and diet. My doc recommends the paleo diet, as do many llmds now, because these foods are biochemically available to our bodies. Meaning we were designed to eat these. It's what a hunter gatherer or caveman would've eaten. It's the same reason you don't pour coca cola on your plants or feed a gorilla granola. ; )

People, esp in the health field, write diet books, create protocals, etc to make money. It's just that simple. For the most part those who try to help the public by promoting the ones that actually work have been ostracized. Just look at all those doctors trying to help autistic kids.

There's no one who is willing to stop this because we live in a capitalist society where very few understand medical terminology. In other words we're easy pickings for anyone who can use big words to make their points. In many cases studies are biased to promote the author's pet theory.

As far as dysbiosis goes, prior to seeing my integrative doc who ordered these tests for me, I'd been on a gfcf, etc free diet then paleo diet 3 years. And I'd taken steps to kill bad bacteria, candida, etc. I've been on probiotcs for 7 years now.

So the only time I had a bad bacteria reported was when I had h pylori and parasites in sept 2011. According to my latest labs I'm low on good bacteria but I also don't eat what would feed these. I have to have bacteria in my gut, we all do, but the ones I have aren't being measured at this time.

I'm still alive and feel good until I stand up but I have orthostatic intolerance which appears to be caused by vasodialtion since zyrtec helps. So imho even IF my gut has dysbiosis, it's not the only cause of my health problems. Taking probiotics regularly and digestive enzymes helps my digestion tho.

I still had a candida problem according to the stool test but I was obvious symptom free. Whether I had a candida problem without obvious symptoms imho is debatable. My labs a few months ago just showed that I no longer have a candida problem but there wasn't any change in my health until I started the mc protocal.

We need to keep in mind they can only test for certain chemicals at this point. Those bacteria and parasite tests are only looking for certain ones but there are more that they're not looking for. I'm not sure if these tests can find anaerobic bacteria. For ex, from what I've read, O forminges is an important anaerobic bacteria for breaking down oxalates so we don't get kidney stones.

Nutrients in our blood doesn't mean it's making it to our cells. Again these tests are limitted as to which forms of nutrients can be tested.
I've yet to to see a blood test for the active forms of b12. Adenosylcobolamin, methylcobolomin, hexa something ? So what else are these tests missing ? If we're not breaking down the supplements we're taking, what's the point ?

And we know from reading about mast cell testing that tests need to be performed certain ways and only certain labs know how to do this or can do this.

Supplements being sold today will be considered ineffective by the very manufacturer who told us how wonderful they were last month. If you've been watching the evolution of CoQ10, you've seen this.

And supplements aren't regulated so there isn't anyone testing these for toxins or making sure they have what they say they do. I'm not saying these aren't safe but I'd consider a negative reaction as a sign to stop taking it.

No one is monitoring how supplements are stored or delivered to where we get them. I live if fl so I don't use mail order companies unless the weather is cold. That doesn't mean the ups truck that delivered them to my local hfs was air conditioned tho. Lol

And some of our intolerances will change. I can eat pineapple most days but not always. This started long before I started taking allergy meds. I just became anaphylaxic to vinegar last year.

Imho, it's an interesting time to be in the health field because as patients we're on the leading edge when it comes to research. And many of us have taken the reigns so our doctors are being enundated (sp?) with our findings. The gf market would not be as successful as it is if patients hadn't demanded it. Research is just catching onto how we can be gluten sensitive without having celiac disease but I saw this on the web in 2005. Theglutenfile explains this.

Medical professionals can't stay up on what we're seeing on the web because they're working hard trying to keep their patients who aren't into healthy lifestyles well. But as patients, we're not medically trained so what we're seeing may or may not be correct info. Esp if we follow everyone who's trying to make a buck on the web.

Just my take ... T C .. Marcia

Title: Re: New contruction
Post by Doozlygirl on 12/07/12 at 22:24:42

Hi Marcia,
I am glad to hear your mast cell meds are working so well for you. Mine did too. I had been on them for 11 months, progressing to 8-12 doses of antihistamines/antileukotrienes a day. Then, something shifted in my body and my meds lost their effectiveness. I was relying on Benedryl more, which scared me since this is truely my wonder drug and I've read about others who've had to scramble to find a decent emergency med.

I am so glad this forum provides an opportunity to compare notes and weigh out risks and benefits of taking various approaches. I too am leary of those trying to get rich off of sick individuals. I am skeptical with it all: prescription meds, one specialist after another....OTC, testing/procedures, supplements, vitamins, insurance companies, the entire food industry, toxins, our water supply, everything. But this skepicism is opening my eyes to things I previously accepted. But my 23and me study didn't cost me a dime. I am extracting every ounce of potential guidance and wisdom out of it as I can.

I hear ya about being stuck on this planet with all those toxins. I too have gone down a similar path with elimination diets, avoidance, testing and treatments. I've bounced between allopathic, alternative and natural remedies for years, likely looking neurotic to my family and friends. I've always known something was missing, because my successes were short lived. My problem is I clean up my leaky gut and candida, but they always resurface, even with a clean diet. I've never tested for parasites or metals, which is likely one reason for my rebounding. Marcia, you are likely ahead of me in this checklist, so you could likely move quickly into a methylation protocol to open up your blocked biochemistry, if you ever see fit.

I plan to go backwards and find out how my gene mutations is impacting my symptoms, then figure out what to eat and what to avoid. I'm getting into the meat of the science and there are great listsout there based off defects. This is the concept of personalized medicine, that you may have heard about. I believe this could fix some of my issues at the cellular level and finally clear my candida and fix my gut once and for all. Of course I can only speak for myself, but I've just started reading how our personal biochemistry must drive our food choices and contribute to which items to avoid.

I have gene mutations that impact the production of various enzymes that are necessary to perform basic functions. My defects causes estrogen dominance, plugs up catecholamine (epi, norepi and dopamine) metabolism, causes ammonia toxicity, drains homocysteine and depletes methyl donors, depletes VIt D and drains catacholamines the wrong way, and creates sulfur toxicity. I know there are plenty more these are good examples. I am now tryng to figure out what I must avoid and other than proinflammatory items have come up with others. To overcome ammonia toxicity, I need to take ammonia free molybdenum, limit meat protein and take yucca and carnitine to absorb ammonia until i can get those pathways working again. I also can't take synthetic b vitamins for folate or folinic acid, all of which I can't tolerate but at least I now know why!! I have been taking the wrong form of certain supplements.

This concept is all over the internet, and there is lots of detailed information that explains it from reputable sources. I am on a mission to learn what I have to do to become well again, and I believe this path will bring me closer to wellness. I'll let you know how it goes.

Lyn

Title: Re: New contruction
Post by MarciaB on 12/08/12 at 03:54:29

Hi lyn,

I'm really enjoying this conversation. It's great speaking with like minded individuals. Kudos to whoever created the internet forum concept. I'd never have found the mc connection on my own.

I'm sorry to hear that your meds stopped working. But I'm glad you posted this so more of us can be on the lookout for this. I hope you're retaining the level of wellness that you initially got from these meds..

I'm still very much in the experimental phase of this protocal. At first, the Wal-zyr worked so good that I cheated on my diet by eating an excessive amount of my known trigger foods. Then I started getting pelvic pain again so I've cut back to cheating just a little. Not cheating isn't an option that I've seriously considered yet. Lol.

I stopped taking Allegra at night because I was getting daily headaches but now I'm getting those again. This coincides with when I started taking Mylan montelukast. I've noticed this reaction to Benadryl too. These meds feel like they're drying up my brain.

Taking 25 - 30 mg of Wal-zyr appears to be what I need to avoid throat swelling but it's making me too drowsy.

And while I'm thrilled to find something that helps and therefore find another piece to my health puzzle, this protocal so far has it's own consequences. At least for me.

So like you, I'm still searching for answers. I see my allergist / immunologist next week and am hoping he's looked at this further.

I've been watching the genetic testing / personalized med approach but not as intensely as you have. I'm new to medical terminology so it hasn't sunk in yet. I appreciate those of you who've become involved in this and I'll be watching how it pans out. I'm not against the concept. I'm just not there yet.

And I'm weighing out whether treating for parasites (again) and chelating heavy metals should be my next step. That's going to involve a lot of research and experimenation on my part too. Treating parasites, which basically destroys good things too, wiped me out for 2 months the last time too.

If you don't mind me asking how did you get the 23andme testing for free ?

My friends and family think I'm nuts too but thankfully those of us who are working on healing ourselves from complicated illness understand each other. The upside is that we know so much more than we did even 7 years ago that our chances of resolving our illnesses have greatly improved. Our puzzles have less missing pieces now.

As far as candida goes, I'm not sure why my labs as of Jan 2012, say that my candida problem is gone. I can tell you what I did just prior to getting a clean test result if you're interested. I've been eating tons of fruit since Jan 2012 and recently added teff pancakes with maple syrup without getting candida. Kow. Teff is the first and only grain I've found that I don't feel sick / weak from.

Can you tell me your sources for genetic testing info ? I'm seeing threads on Pheonix Rising but haven't looked at them yet. That's usually another great resource tho.

Good luck on your journey too. I look forward to hearing more from you. Tc .. Marcia

Title: Re: New contruction
Post by BlueSkies on 12/08/12 at 03:55:37

Doozlygirl wrote on 12/06/12 at 20:44:52:

I am studying folate and B-12 metabolism, glutathione metabolism, and methylation in general. This is oversimplified but we are so reactive to everthying because proper methylation is required to make t cells. If there is not enough methylation and not enough t cells, then B cells take over. B cells (which account for mast cell hypersentivity, immune responses, asthma, etc) have taken over t cells, so major immune imbalance. Once that balance is restored, then our hypersensitivity goes away and we can tolerate more and can use less meds, etc.

Lyn

Lyn, from your studies of this, can you think of any connection between B-12 and leg problems? Specifically, when I take B-12 my legs problems increase. Some of the things, like stress, that trigger my masto, also trigger my legs. They get too weak to hold me up, or they start having trouble moving.

Tests show me as B-12 deficient. And my nerves are shot without it. But taking it increases the leg problems, oh, and can cause me to tremble through out my whole body.

I appreciate the info you share! It's very helpful. It fits in with what I have been learning this year. However, at this time I don't have a doctor on my insurance plan who is knowledgeable about any of this.

Also, how did you go about healing your leaky gut? Food intolerances are a major problem for me. And, I see what mean about not just avoiding foods, but solving the problem so we can add them back in. I think helping my gut would reduce the food intolerances.

Thanks!
BlueSkies

Title: Re: New contruction
Post by Doozlygirl on 12/08/12 at 20:51:19

Hi BlueSkies,
B-12 deficiency is long known to contribute to MS-like symtoms. I had a coworker who 18 yers ago was diagnosed with MS, then treated with daily B-12 shots and her MS like symtoms went away.

I am reading that inapproapriate form of B 12, folate or other nutrients can often make symtoms worse if there are specific defects in specific methylation cycles.

This may be hard to believe, but there are likley more doctors out there who have some understanding of mast cell activation than the number of docs out there treating these methylation/MTHFR gene polymorphisms. I am glad you find value in what share, even if I haven't figured it all out yet.

It looks like one may want to consider long and hard about sharing this level of genetic mutation information with physicians and insurance companies. So much of the implications of al this have yet to get worked out and experts believe it will be at least 15-20 years before the current structure of allopathic medicine can support all genetic details can shed light on. Insurance doesn't cover any of it, and if it does, it is sporadic. My testing was part of a research protocol thorugh 23andme, so it didn't cost me anything, and no doctor prescription is required for this testing. So, I am sorting this out on my own, with the online help of others who have traveled this path and resources by the experts.

I have tried to healing my leaky gut for nearly a decade, with various methods commmonly found online, but nothing has worked to keep my gut healed. I've used elimination diets and allergy tests to limit inflammatory response, magnesium liquid, avoidance of meds that hinder gut ecology, allergy subligual drops to treat known allergies, anti candida diet, probiotics, gastrocrom, digestive enzymes, DGL, ACV, other vitamins/nutrients, avoidance of oral antibitics for other "infections", I've taken an antibiotic to restore my ecology (forgot name but xifaxin, sounds familiar - it is only metabolized in small intestine and used to treat dissentary in 3rd world countries), diflucan, ketoconezole, PPIs, H2s then had to ween off PPIs over 6 weeks and same with H2s, now.

I am learning that my ongoing leaky gut is part of a wicked cycle and I am not approaching the entire issue and need ot address other gut bugs and heavy metals, which is likely causing my body to stay in the cycle. Unfortunately, avoidance of those food trigers is necessary until the immune system can resume balance again. Back to chicken and egg scenario.

Within in this methylation world, experts advise gluten free and casein free to help lower inflammatory burden, and of course things you specifically are intolerant to. then once you treat the gut, and address the SNPs, then the body should be able to resume some homeostasis again. SO, that sounds good to me!!!

Thanks for your kind words.
Lyn

Title: Re: New contruction
Post by BlueSkies on 12/16/12 at 10:45:32

Hi Lyn,

Boy am I sorry I couldn't reply before this! My elderly mother had some new health problems, and that took my focus since I posted before.

THis connection between B-12 deficiency and MS like symptoms is really interesting! I am so glad you told me about it. I had B-12 shots for a while. At first they were helping with my energy. Then, later on, a shot would put me in bed! And, they seemed to make my legs worse. I wonder if I got too much, or what. Or maybe this is a problem with the methylation cycle. But I think I am deficient again now. I am seeing an allergist this week about the masto, and I will bring that up, too - altho B-12 is probably not his area of expertise. Unless he deals with B-12 allergies! But, I am also rereading your comment on the lact of knowledge about methylation problems. If I learn anything I will share it!

THis is interesting about your experience trying to heal your gut. I was hoping that healing my gut would lead to greatly improving my whole body. I'm sorry yours has not worked out, yet. But, it does make me think that maybe this does not need to be my top priority at this moment. Just a "try to keep it in mind and work on it as I go" type priority. It makes sense that the whole picture needs to be addressed.

I have been through extremely strict avoidance diets in the past, and that helped. I have also done allergy drops - and that was an incredible help - but I can not find anyone who does them now. (Mine were preservative free - necessary for me.)

My brains are rapidly fading on me here - so I am going to have to quit. I really like your summary in your last paragraph.

Thank you so much for your very informative post! And taking the time to share what you have learned. What a help, Lyn.
BlueSkies

Title: Re: New contruction
Post by Joan on 12/16/12 at 13:06:26

I've been taking the methylcobalamin form of B 12 in a sublingual tablet without artificial flavorings. My energy level is so much better since I began.

What is the name of a safe form of folic acid?

Title: Re: New contruction
Post by Doozlygirl on 12/16/12 at 17:23:01

Depending upon specific broken methylation pathways, some can tolerate cyanocolbalamin and folinic acid, but others require methylated B-12 and methylated folate and yet others require hydroxycobalamin and methylated folate.

I still haven't figured out what would work for me, as I have multiple layers of methylation issues.

With all I've recently read, I highly recommend figuring out some of this before just popping a form of B12 or folate. I've been reading horror stories of folks that ended up in the ICU for weeks triggered from the wrong form and dose of simple supplements.

And just because you tolerate it for a few weeks, one day could trigger disaster, as methyl trapping is something that is BADNEWS!!!

Lyn

Title: Re: New contruction
Post by Joan on 12/16/12 at 19:44:14

I've been taking this form of B12 for a relatively long time and without reactions. I just feel better on it, and the B12 level in my blood is now well into the normal range. I've been taking a regular Folic acid supplement, but I'm going to switch.

Thanks

Title: Re: New contruction
Post by Doozlygirl on 12/17/12 at 23:00:09

Marcia,
I am so sorry, somehow I missed your last post, and am now only reading it for the first time.

I appreciate your kind words. I have bounced back quite well off the high dose of meds. I still have many of the same issues I had before MCAS, such as horrible insomnia/shifted sleep pattern and GERD, which I am working on now.

I enrolled and was accepted into a 23andMe MPN (myeloproliferative disorder) research protocol, which ended enrollment mid year. But 23andME just recently dropped their permanent price to $99 so others can afford to join in all the fun! This genome study tests for a gazillion SNPs, and gives an idea where potential issues lie. As I learn more about how our body works by studying biochemistry, I can make many more leaps to connect some big dots.

The trick to all this, (my theory after spenidng months studying the methylation gurus and their successful work in multiple chronic illnesses) is you have to determine where your personal body chemistry is boken. Finding trends in reactions and symtoms patterns is a good place to start, but genetic data/SNPs tells you where to focus. Additional testing of the GI, nutritional status and other areas can give a fine tuning to where your broken chemistry pathway is located. These experts are pretty convinced that by chelating or treating parasites without fixing broken methylation pathways is not going to produce longterm success. So i am hoping once i fix my broken chemistry, that wellness can't be far behind.

I'd love to hear how you finally licked candida, been in and out of "remisison" for 7 years. Would love to learn more about Teff. Heard of it, but never tried it. Do you buy it in bulk or in a mix with other ingredients? Do you use it in drop breads?

Phoenix Rising is a great resource, but I had to step away for a few months and seek out basic 101 stuff. Way over my head at first. Check out Dr Kendal Stewart on You tube. He has 5 15 minute clips of a lecute he gave in Charlotte last year. Great entry level overview of methylation and how it impacts neuroimmune disorders. I am not yet sold that his cookie cutter treatment approach is right for me, but love love love his visual description to all of this. Once you are comfortable check out Dr Rawlings and methylation on you tube. Then let me know where you are and I can guide you to other resources.

Can't wait to swap notes. Take care,
Lyn

Title: Re: New contruction
Post by Doozlygirl on 12/21/12 at 11:03:19

BlueSkies,
I just realized I hadn't responded to your last post. Sorry for the delay.

I've taken B-12 shots and OTC B-12 but neither helped me much and both have given me symptoms. Just a few moths ago, I tried my OTC B-12 sublingual pills and got all jacked up, like I was on high doses of pseudofed or had taken epi. Now with my reading about methylation issues, I see that some people just can't convert cyanocobalamin, which is the form that I had taken in shots and pills in the past. There are methylcobalamin and hydroxycolbalamin versions out there, but it depends which other methylatin pathways are blocked, as ot which one should work. The MTHFR folks are anti synthetic B -12 vitamins, ans always look for active natural forms of vitamins, expecially B-12.

I've taken allergy drops in the past with success, but pretty sure I am reactive to a bunch of things now. May go down that path once I address my methylation issues.

Please share whatever you learn about methylation and how you were able to connect your dots. With a bunch of us looking into this angle, we should be able to make progress. Check out MTHFR Support website and Facebook page. Great place to connect with others seeking the same information.

Once again, I appreicate your kind words.
Best wishes,
Lyn

Title: Re: New contruction
Post by brigitte on 12/21/12 at 11:21:02

Hi there! So what is methylation, or methylatin? Is it found in medications? I have adverse reactions to almost every kind of medication (hence my recent posts about teying to find a slow release iron supplement that doesn't cause me issues) Could this methylatin be part of my problem??? Something I should try to avoid???

Title: Re: New contruction
Post by Doozlygirl on 12/21/12 at 16:06:17

Hi Brigitte,
Methylation is the term used for a type of biochemical pathway in the body to breakdown everything from homrones, enzymes, cofactors, medications, foods, toxins, etc. Methylation itself is the process of adding a methyl group (CH3) to these things needed to break down. Liver Phase I and Phase II liver detoxificaiton is where this all happens. Reactions to meds can stem from dozens of places, but if you can cross off IgE allergy or direct degranulation in mast cell reactions, then broken biochemical pathways may be a logical place to look.

Several of us are using our genetic information form 23andMe to help direct this for us. Any posts you see about MTHFR are regarding a specific gene defect causing the body to not be able to convert inactive folate into active methylfolate.

I have found out a big chunk of my issues are tied to methylation genetic errors and by using my genome data, I am able to sort out where my own biochemistry is broken, and why I keep reacting to various items or trends from items. I react to sulfa meds, sulfites as a preservative in meds or food, and sulfur cruciferous veggies. When i learned they all need to be procedded in the same chemical pathway that I have genetic blockages, it made sense and now I am avoiding them, until I figure out how to clear those blockages.

I wish I could say all this is as easy as avoiding something but it is not.

Regarding slow release iron, I can't tolerate it either. Since Slow Fe went off the market last year, we have found some at Target for my mom, which she tolerates.

Best wishes,
Lyn

Title: Re: New contruction
Post by brigitte on 12/23/12 at 08:22:18

Interesting. I have always thought that many of my symptoms are coming from medications, but from what in the meds, I have no idea. I wrote on here a few days ago asking if anyone knew of a dye free slow release iron. I finally found one and started it two days ago. I have been shaking like a nervous dog ever since. After reading your post on methylation, I looked and my iron is ferrous sulfate..... Hmmmmmm..... I am not diagnosed MCAS (although I highly suspect it) so I wasn't able to get in on that study. At this point my diagnosis is autoimmune urticaria. But Dr. Afrin sent me a email saying that when it comes to mast cell disorders, although the reason may be different, the outcome of degranulation is the same. I wonder how I could get tested for a methylation "problem". What are some of the drugs that you know you have a problem with??? I would say 90% of the time I have either a adverse reaction to medication/vitamins/minerals/herbs, or a bad reaction. It makes taking anything quite an ordeal for me! :D I just wish I could start putting some of the pieces together! So frustrating! But I am thinking these iron pills are a no go. Already took it this morning >:(

Title: Re: New contruction
Post by Joan on 12/23/12 at 18:55:24

Has anyone discussed methylation issues with Dr. Akin, Dr. Castells, or Dr. Afrin or other mast cell disorder authorities? If this is going to be discussed as a potential treatment for mast cell activation problems or as a cause of MC problems, someone needs to get an opinion from our experts.

I'm not suggesting there is or isn't truth in what you're saying, but we aren't doctors. The docs mentioned above can tell us if there's any research showing a relationship between methylation and MC issues.