Unsure Where to Start

[wootah88]

Hi,

I have EDS, my mom has EDS and Fibromyalgia and I believe CFS as well. I got severely ill in Nicaragua in 2010 and had IBS symptoms up until last year when nothing would help. My doctor and I are exploring whether I have a mast cell disorder, which three months ago I could have guaranteed I did. And then something changed but I don't know what. I was on a ton of supplements for candida (confirmed though a stool test), like oregano oil, as well as multivitamins. I tried quercetin because it was supposed to help with the histamine response I was having and I believe that's what triggered the change. Since then I've had terrible anxiety, this wired feeling like there's an electrical surge running through my body, and like my skin is burned. I'm incredibly intolerant to most foods (I have a list of about 15 items I believe to be safe) with symptoms like severe abdominal pain, headache, nausea, weird aches and pains, on and off fatigue and tons more. The flushing is less, the itching is less, my reaction to histamine is less. The symptoms as a whole just FEEL different so I don't know how much I believe this is JUST mast cells.

I've been researching MTHFR polymorphisms and I believe I fall under this umbrella of genetic issues, but I haven't been tested yet (pretty low on funds at the moment). My B12 is above the norm but my doctor didn't say anything about it but I'm wondering if I have a functional B12 deficiency and maybe should try an MTHFR protocol, like Freddd's. I decided to start with methylB12 at 250 mcg and the first night I got SUPER tired. The second night, not much difference and then the morning of the third day (today) I woke up with the wired/surging feeling and anxious and just not feeling "right" (sorry I'm not really sure how else to describe it). I continued with the day and it went down hill after lunch, feeling high anxiety, irritability, loss of focus, and SUPER nauseous.

I did a little research and found that a lot of people attribute this "surge" sensation to glutamate. AHA! Interesting because the multiple times I've tried glutamine (before and after my sudden symptom change) I got incredibly irritable, had organic brain symptoms, and a terrible headache. At the time I was trying to heal my gut so I also tried N-Acetyl-Cysteine which made me really out of it and so incredibly nauseous I was throwing up all night.

I guess what I'm getting at is should I be working on my methylation cycle or is there something else I should be focusing on first before I try to attempt that protocol? Am I overmethylated and that's why I had this response today? I just took 50 mg of Niacin and I feel MUCH less anxious (only too 20 minutes) but I'm bright red and my skin feels like it's prickly/burned. I read about the CBS pathway being a potential issue, especially if one is having trouble with high glutamate symptoms?

Any thoughts on where I should go from here? I'm trying so hard to educate myself on this topic but it's quite overwhelming and I just don't know where to start. I would eventually like to find a functional doctor to work with but my anxiety there lies with trying to find one who knows what they're talking about and will work with my immense issues.

Thanks all

 

[JAM]

Welcome! It is very hard trying to navigate so many issues, luckily there is a great community of knowledgeable people here to help. This isn't in my area of understanding, so I will let someone else answer your questions. Good luck.

 

[wootah88]

@JAM, Thanks, I hope someone can help me out too. People on here are seem very knowledgable. I hope I posted in the appropriate area.

 

[xchocoholic]

Do you have a base diet where you're not getting intolerance or allergic symptoms ? We're all different here but basically the elimination diet involves eliminating gluten, dairy, soy, corn, eggs, nuts, shellfish and all chemicals. OR anything you're eating regularly.

And check your environment for toxins. Things like laundry soap, air fresheners, cigarette smoke, mold, etc. Teenagers ... lol.

My dr had me find foods for myself and stick to it without taking anything except Klonopin, prescription for myoclonus, for a few months so my body could recover from the constant assault of food and chemical intolerances.

After that I took a variety of supplements over the years. Some helped for awhile but then I became intolerant of most of them also. Evidently, my body is stuck in attack mode. Lol.

Fwiw, I've seen 3 functional doctors and none of them were overwhelmed by my symptoms. My understanding is that they're accustomed to dealing with more complicated patients. It's refreshing to be greeted by a doctor vs getting that "what the hell do you want" look. I'd look for 1 with some experience just to be sure tho.

Fwiw, I found that taking 1/4 -1/2 tsp of dye free children's benadryl (Walgreens brand name in the US) stops my obvious allergy symptoms of phlegm, scratchy throat and ears and swelling within 20 - 30 minutes. I was taking this during the day as needed then switched to bedtime only. I just gave up my nightime dose last week because I noticed it made my cognitive problems worse. Doh ! Zinc helps too and I'm experimenting with this. I needed 50 mg daily at one point.

Hth.. x

 

[wootah88]

Thanks for the response. I do have a base diet that consists online of fruits, veggies and meats, all of which I don't react all that much to. It's difficult to tell because my symptoms have changed so much that I don't know if something I eat is throwing me into anxiety, deep depression, or this wired/surging feeling in my body.

I don't bother with allergy meds anymore because they don't seem to help my main symptoms which are more cognitive, psychological and, again, this wire/surging feeling in my body that is usually the worst when I first wake up. I'm exhausted but my entire body feels like it's on high alert. The rest of the day I just seem to drag and I don't like taking naps anymore because I have ridiculously vivid, disturbing dreams. ATM I'm not on any other supplements except probiotics.

 

[xchocoholic]

You're describing what I would consider a chemical or too much of a good thing reaction. I just started taking blue green algae and had this. Again. I'm working on finding an appropriate dose.

I'd stop the probiotics too. You can be sensitive to anything.

And stop anything that isn't whole organic foods. Or anything that may be stimulating like coffee, tea, chocolate, etc. Some of us are super sensitive to stimulants.

Have you tried juicing ? It's a natural way to get more nutrients.

Fwiw I've found that getting some exercise daily helps keep me calm. Somewhere after starting this healing journey my body began producing energy again. If I don't use it I don't sleep well and I feel anxious. Walking for 20 minutes is working for me. Pem interferes with meeting this need but I'm working on it.

Tc .. x

 

[MikeJackmin]

I got severely ill in Nicaragua in 2010

Your profile suggests you're in the US now. There are any number of diseases and/or parasites that you might have been exposed to there, which would be rarely seen by US doctors and which would likely fly right under their radar. (It's not their fault, they can't be experts in everything).

It might be a good idea to arrange an exam from a specialist who is knowledgeable about these conditions. It'd be wonderful if it turns out you have something that can be identified and treated directly.

 

[wootah88]

@xchocoholic I tried stopping the probiotics once and it made my diarrhea and depression worse. I stopped the chocolate a few weeks ago, coffee months ago, and only really try chamomile tea once in a while.

@MikeJackmin I have been tested by a plethora of doctors for different things, including an integrative doctor who I hoped would test for a larger array. I suppose I could see a specialist but my worry is at this point I can't take many medications without having terrible reactions to them so I'm not sure what help they would be. But don't get me wrong...it would be wonderful if I could treat what ever is wrong directly. I've just been through 7 doctors over the past year and a half.

 

[wootah88]

I should add that they did find Candida from a stool sample and we treated it with two rounds of Diflucan but after the first round was when my symptoms changed.

 

[xchocoholic]

S boulardii may help with your diarrhea. I only need 1 to stop mine nowadays. Kow. I buy Jarrow brand.

I'm not sure what all Diflucan kills but candida and s boulardii are both yeast. S boulardii is a good yeast. I saw autistic kids on biomed treatments use this.

I had to stop all probiotic capsules earlier this year so I'm eating a little coconut yogurt instead. I'd been taking them for years and they just started making me feel sick.

Have you tried parasite treatments ? Even just eating papaya and honey work for some. But there are protocals on the web for this.
Metametrix cdsas can't positively id all parasites.

 

[wootah88]

I'm actually already on an S. Boularrdi supplement and have been for months. I really think this has moved on past just being some kind of infection. I know there is dysbiosis going on but my problems have become systemic which is why I'm exploring potentially having a mast cell diaorder, functional B12 deficiency, MTHFR polymorphism, etc.

Thats why I tried the mb12 yet from what I could notice it seemed to bring on the wired/adrenaline feeling in the mornings that are just absolutely terrible. I can't function much throughout the day and just feel like I'm in a terrible fog/funk and dragging all day. I know this has something to do with my dysbiosis but it appears to have become quite more than just that and it is also quite tricky address that with such reactions to so many meds and foods.

 

[ahmo]

@wootah88 wondering if you could be reacting to histamines, both in diet and produced by the body...Try omitting all fermented food... here's a list:
The Many Faces of Histamine Intolerance http://healthypixels.com/?p=1044}
http://www.histaminintoleranz.ch/download/SIGHI-FoodCompatibilityList_HIT(EN).pdf

You'll find a link in my signature to a Dummies guide to methylation protocol. Might be useful re where to start. Also howirecovered.com/active-b12-therapy-faq might be a concise way to start. A more comprehensive Guide to Freddd's Protocol is in my signature.

 

[wootah88]

@ahmo oh yea I definitely avoid histamine as well as high dalicylate foods. I actually already checked all of those out I LOVE Yasmina (low histamine chef). I'll recheck and see if there is a better starting point than just mb12. Guess just alarmed by the sudden and exaggerated feeling of adrenaline/being wired. Thanks for the input be well!

 

[xchocoholic]

@xchocoholic I tried stopping the probiotics once and it made my diarrhea and depression worse.

Since you're already taking s boulardii and still getting this when you stop your probiotics, I'm out of ideas then. Other than if you haven't already I'd see a gastroenterologist.

Hope you find something that works for you. Tc .. x

 

[wootah88]

@xchocoholic thanks, I appreciate your help! I've seen 4 different GI doctors thus far and 3 other docs as well. I'm going to a specialist tomorrow so maybe he will have some insight. I am just very speculative that they will know what's going on since no one else has.