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

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

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

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      

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?

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

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