A cry out for help...

[LivingwithFibro]

Hi everyone... this is my first post...I have been trying to make this post for so many days but I kept putting it off (immense brainfog and fatigue) I'm 19 years old and I have been suffering non-stop since 15 years. I have a few queries and I know this post will sound like a hodge podge so please bear with me, be forgiving and kind and try to guide me in the right direction...

I have been feeling so suicidal lately but I simply won't give up, I have tried so many protocols and so many cures and here I am at last. I have been researching Dr Rich, and Amy's work since a few months and been reading about Glutathione since 2011. I'm all alone in my quest to get better, parents or family or friends simply do not understand the detox jargon or my health problems, all they can do is pity me and pray for me...

I have been through emotional trauma, lots of abuse and I have really wrecked adrenals, I haven't even completed school because of my fatigue but lately after some diet changes (as I said I simply refuse to give up) and supplementation I have started working again...I even teach for hours back to back without a break which I think is amazing for someone with CFS or FIBRO...
I also work and don't rely on anyone else and have been doing so for some years... Now I'm just trying to understand what to do with the info I have regarding the methylation protocol, the methylation block and cycle...whose work to follow (Dr Amy's or Rich's) and share my journey with you lovely people... I almost gave up a few months ago and I was ready to quit my journey in this physical world when I came across Dr Rich's work, been reading your posts ever since then and lurking...

A couple of things I want to ask first
1) How do you get tested for these conditions?

2) Can one arrange an appointment with Dr Yasko or can someone put me through to her? I'm not in the states btw...but I'm dying for some guidance and I feel fed up that I have to do this all by myself. I really want to work with a practitioner

3) What's the simplified methylation protocol and what's the complex one? How long does it take to heal with these protocols?

There were months in which i was bedridden and i have been sick every week in every month (with a few exceptions when my diet was super good and i was taking lots of supplements but ofcourse i cant do much because of my financial situation)

I will address some of my issues, my diet and my symptoms in a later post. Basically, I have FIBRO, adrenal fatigue, underweight since I was a child (I'm 77 pounds aka 35 kgs and was 33 pounds aka 15 kgs when I was 9, it's been this way forever), low body temperature (again cycle problems, hypothyroid I suspect? although blood tests show i'm fine) joint pains all over my body, muscle spasms, muscle aches, lots of mucus in me/chronic sinusitis, symptoms of ibs (doctor isnt sure though) gluten intolerance, insomnia, anxiety, depression, panic attacks.....

i have taken nac in the past and im starting it again as it helps with my symptoms and ive had amazing results with it, never bad results...i also had good results with the raw vegan diet (intially, needing only 6 hours of sleep in the first few months but then crashed really bad and got worse!) now i'm trying tof ollow a paleo diet...i have heard Dr Amy recommends it?

Like I said, I simply won't give up.... There must be a cure for me somewhere, I know I'm not meant to suffer my whole life. I want this nightmare to end already, I want to be happy and normal like others...plus the pain gets worse day by day. I would at least like to try everything before I give up, everything...everything

 

[LivingwithFibro]

Right now in the couple of days I have made a protocol for myself, it includes dietary glutathione, precursors of glutathione, glutathione iv and herbs that help liver function and the liver to make glutathione..

i saved up for this plan since months but now i'm thinking perhaps it would be better for my body to make its own glutathione...although Dr Rich had said in his posts (and hypothesis) that a glutathione defiency is partially what causes all of this so it should help, i can understand some others didn't tolerate it at all whilst others got better with it....so i'm still quite divided on this topic...I guess all I can is one size doesn't fit all....

Will post my plan later

 

[Countrygirl]

Welcome to PR LivingwithFibro!

You will receive much help and advice from people here and well done for tackling the methylation protocol.
You are certainly wise to follow the paleo diet too as in my experience it does help some of the symptoms.
I strongly recommend that you tackle the insomnia as a priority and there are threads here that will give you many suggestions. I find that a varied cocktail of different amounts of surmontil, baclofen and zopiclone has helped me to partly overcome the weapon-grade insomnia which plague so many of us and I hope you find some suggestions here that will help you conquer that particularly wretched problem.

I look forward to reading your plan when you share it with us.

C.G.

 

[Nielk]

Welcome to the forum.

 

[Kati]

Hi @LivingwithFibro , welcome.

I am very glad you are not giving up. You are young and there is hope to be had.
My suggestion to you is to find a physician to work with if at all possible. Since you have a very small stature, perhaps there needs to be other conditions to be ruled out, including but not limited to the endocrine department.

Perhaps you could let us know in which general area you live in.

The forum is a very ressourceful place to be in. Glad you found us and best wishes.

 

[WillowJ]

hi, welcome to PR.

I've nearly always been underweight like you (some years I manage an ok weight) and been ill a similar number of years.

Take care.

 

[minkeygirl]

Dr. Yasko is on Facebook. You can just post on her wall and she should respond. She did when I asked her something.

 

[Gingergrrl]

Welcome to the forum and I wish you the best in your search.

 

[boo85]

Thanks for sharing your story. A lot of us have similar stories.

I too am trying to get out of a deep depression. I think the worst of it is over, but it can be changed and you're not alone.

Have you ever supplemented with Vitamin B12 before?

What country are you in?

When was the last time you got your B12, Vitamin D, iron, magnesium etc checked?

What is your diet like? Do you eat sugar (including maple syrup, honey, agave etc)?

Do you eat wheat/gluten/grains?

If you go to my journal from my signature, I have a list of things that I get checked at least every 6 - 12 months. If you post the results, particularly of B12, we can take a look and give you our input.

 

[LivingwithFibro]

I am overwhelmed and in tears with these messages! They give me such strength and warm my heart.

Reading them over and over again, I didn't think anyone would read my post...wasn't expecting this kind of response...

Will reply to everyone tomorrow as it is very late here.

Can everyone share a link to their stories meanwhile?

I would really appreciate it if you could share your story with me... I would like to know what you are battling, where you are on your healing journey, e.t.c

Wishing everyone a good night, lots of happiness and health. Peace/Namaste.

 

[boo85]

@LivingwithFibro

Your story is soooo common. It's ok. We can get through this.

My story is here - http://forums.phoenixrising.me/index.php?threads/boos-healing-with-b12-journal.32813/

But I don't expect you to read all of it. It's just a journal to track my progress and reactions to supplements and perhaps let other people know that they aren't alone in dealing with the things I'm dealing with.

 

[sregan]

Like I said, I simply won't give up.... There must be a cure for me somewhere, I know I'm not meant to suffer my whole life. I want this nightmare to end already, I want to be happy and normal like others...plus the pain gets worse day by day. I would at least like to try everything before I give up, everything...everything

You hang in there, you will find strength you didn't know you had.

This is a good description of the Simple Methyation Protocol: http://forums.phoenixrising.me/index.php?threads/freddd-protocol-2014-cliff-notes.28718

 

[ahmo]

Many of your symptoms can be linked w/ B12, although there are other causes as well. Always. Another good source of info for you to get started, gives you info on 2 B12/folate methylation protocols:
http://howirecovered.com/active-b12-therapy-faq/

You've come to the right place for help, and your attitude and perseverance are your biggest allies.

 

[Gingergrrl]

You hang in there, you will find strength you didn't know you had

@sregan That is really true and this illness forces you to find strength that you didn't even know you had. Thank you for reminding me of that.

@LivingwithFibro I have been posting here since June and this board has given me courage, support, new friendships, strength as well as solid medical info that has helped me on my journey and I wish the same for you.

 

[taniaaust1]

Welcome (dont drain yourself too much with trying to respond to all the posts)

lots of mucus in me/chronic sinusitis,

As your doctor to do a nasal swab. Thou 25% of normal people have staph in their nose, it has been found that ME/CFS people can carry "toxin releasing" kinds of Staph in thier noses and that can cause that symptom.

"
A couple of things I want to ask first
1) How do you get tested for these conditions?"

I had was tested for MTHFR mutation due to another test result I had, thou that result was in range my specialist told me it indicated I almost certainly had MTHFR polymorphism as he said it was higher then those who dont have it. Turned out he was right and I did have it on MTHFR testing.

I also had 23andME testing done several years later which backed up another issue I thought I had from symptoms I had to some foods (CBS mutation) . This test too showed my MTHFR mutation too from my raw data results run throu free online programs. IF my doctor hadnt been so good, I would of found out about that only then but by that point I had been on treatment for it for a few years. (I dont currently know what gene testing 23andME is still doing as they have cut back on some of them). MTHFR mutation of the kind of I have is quite a bad issue in the methylation cycle.

Anyway.. its always good to look at the methylation protocols or try to find out what methylation issues you do have as many have been helped by them some.

How's your vitamin D? low D can cause body pain or add to it.

My specialist has me on an adrenal adaptagen (a herbal one).

 

[cman89]

If you have not done any methylation yet, I would try a trial version, with lower initial cost and no testing needed. It's buried in Fredd's posts somewhere, but basically, you supplement with the Methyl b12 and the Aden b12 plus methylfolate , potassium, calcium, and some co factors. It is the cheapest way to give it a try. Start small, build up, and let the trial serve as a test. It is important not to initially overdose. For many, their tolerance is very low.

 

[LivingwithFibro]

First of all, I would like to thank everyone for taking the time to read my post and then replying to it. Means a lot!

I'm so sorry for the late reply, I work 7 days a week and have immense brainfog as I said... and lately I have been so depressed and drained with researching all these protocols and taking in so much new info and not knowing what to do with it that I didn't know how to reply to everyone.

Like I said, I am really tired of doing everything by myself, having no support from friends and family.

I would love to work with a practitioner if possible, maybe a GAPS diet practioner for healing the gut and gaining weight and someone who has experience with the methylation protocol.

It is so tiring to do everything on your own, work 7 days a week, earn and make your own food and study AND then be confronted with all my ailments and all these things to try out ....

I feel overwhelmed and suicidal at this point. Hell, I am crying even now and I'm tired of crying. Sometimes it feels it would be easier to just pass away. I am so confused.

 

[LivingwithFibro]

Welcome to PR LivingwithFibro!


You will receive much help and advice from people here and well done for tackling the methylation protocol.

You are certainly wise to follow the paleo diet too as in my experience it does help some of the symptoms.

I strongly recommend that you tackle the insomnia as a priority and there are threads here that will give you many suggestions. I find that a varied cocktail of different amounts of surmontil, baclofen and zopiclone has helped me to partly overcome the weapon-grade insomnia which plague so many of us and I hope you find some suggestions here that will help you conquer that particularly wretched problem.


I look forward to reading your plan when you share it with us.


C.G.

Thank you for the welcome, @Countrygirl. Glad to be amongst you!

I feel (or rather hope) a proper diet (Weston A Price, Paleo or GAPS or a mixture of these) would tackle many of my issues coupled with Glutathione IVS , supplements (glandulars, herbs, enemas) and a methylation protocol maybe...

I also believe that one should get as much as nutrition as they can from food rather than supplements but yet am open to them, they can be beneficial for some cases...I am also big on natural/alternative/holistic healing, I prefer it to allopathy. I have been wrecked, hurt, conned and misdiagnosed too many times by doctors to view most of them if not all in a positive light.

It's amazing how raw/paleo/weston a price/gaps diet is so nutritious and rich in B Vitamins, Selenium and other things which would help the methylation cycle and glutathione production.

I have been taking Niacin and NAC and sleeping pretty well lately. I will get my first Glutathione IV shot today or tomorrow.

Thank you, I am preparing three huge posts related to my plan: 1) What diet I plan to follow 2) Supplements (Herbs, methylation protocol, glandulars, enemas, glutathione- that sort of thing) 3) My symptoms and ailments in full detail plus diets from the past and so on....

 

[LivingwithFibro]

Welcome to the forum.

Thank you! @Nielk

Hi @LivingwithFibro , welcome.


I am very glad you are not giving up. You are young and there is hope to be had.

My suggestion to you is to find a physician to work with if at all possible. Since you have a very small stature, perhaps there needs to be other conditions to be ruled out, including but not limited to the endocrine department.


Perhaps you could let us know in which general area you live in.


The forum is a very ressourceful place to be in. Glad you found us and best wishes.

@Kati - I feel so shaken right now...I wish it would get better, I feel so alone.


Hmm, I do not know to much about the endocrine glands... Last year I did speak to a herbalist who said I should glandulars (thyroid, parathyroid, adrenal and pituitary) as all of them seem to be down. Is this what you meant?

I really don't know what to with my small stature but it has a huge impact on my confidence and physician here told me that I might not be able to ever have children with such a poor weight... it really kills me. Is there really no way I will be able to gain weight?

I'm living in South Asia. Not in the states.

I'm glad I found this forum too!

hi, welcome to PR.


I've nearly always been underweight like you (some years I manage an ok weight) and been ill a similar number of years.


Take care.

Thanks @WillowJ Take care of yourself too. Can you please tell me what is your weight and how do you manage it?

I am 35 kgs, the only time I gained weight was on a super restrictive Raw Vegan diet (oh the irony!!!!) and I gained about 2 kgs, that's all.



I am hoping the gaps diet/raw paleo/weston a price will help me balance out my weight. Do you think it is something related to the methylation cycle, gut or hypothyroidism? My tests come out fine but I'm not so sure...

Dr. Yasko is on Facebook. You can just post on her wall and she should respond. She did when I asked her something.

Hi @minkeygirl I wrote an e-mail to Holistic healing, her company. I guess the best I could do is join her forum but like I said I would prefer to work with her or another practitioner personally. I'm too tired now.

Here is the reply:

"Dr Amy no longer sees patients but does comment on biochemical tests that are run thru her directly, and that would be best way to get her personal input. Below are copies of the Pathways to Recovery book, workbook and the simplified protocol which explain what is involved in program and the many resources available.

I will attach a recent post form the group on where to start. You may also be interested in Dr Amy's newest book Feel Good Nutrigenomics, Your Roadmap To Health: http://www.holisticheal.com/feel-good-nutrigenomics-your-roadmap-to-health-book.html

Dr Nancy Mullan uses the protocol in her practice, has experience with adults and does offer phone consults: http://www.nancymullanmd.com/"


I will try to contact Dr Nancy Mullan now I guess but I am not sure if she could help for my condition. Has anyone here worked with her?

 

[LivingwithFibro]

Welcome to the forum and I wish you the best in your search.

@Gingergrrl Thank you, dear!

Thanks for sharing your story. A lot of us have similar stories.


I too am trying to get out of a deep depression. I think the worst of it is over, but it can be changed and you're not alone.


Have you ever supplemented with Vitamin B12 before?


What country are you in?


When was the last time you got your B12, Vitamin D, iron, magnesium etc checked?


What is your diet like? Do you eat sugar (including maple syrup, honey, agave etc)?


Do you eat wheat/gluten/grains?


If you go to my journal from my signature, I have a list of things that I get checked at least every 6 - 12 months. If you post the results, particularly of B12, we can take a look and give you our input.

Hi @boo85! Thank you for reading and for that little ray of hope. I wish you much success on your healing journey.

Regarding your b12 q- I have used MECOBALAMIN 500 mg in the past, haven't noticed much difference though. My Multivitamin (centrum, a cheap little thing because I can't afford better for now) has b12 too.

I'm in South Asia.

My iron levels are fine, I live in a tropical climate so I guess D should be fine too but I still supplement with D3. I haven't gotten those checked though...too broke right now for any tests.

My Diet was Raw Vegan (Mostly fruits, veggies, fruit juices, fermented sauerkraut, some little nuts and seeds here and there)

My situation got much better when I cut grains, sugar and processed food out of my diet competely. Right now I am eating whole foods, doing juicing, some cooked meats and vegetables, and raw organic free range pasture raised eggs.

I do no/cannot consume gluten or rice or even lentils as they give me the worst hip, abdominal pains, chest pains, back pains, headaches, migraines, anxiety attacks, depression, rashes and acne, nerve pain, sinus drainage, Urinary tract infections and bloating. So processed foods, gluten, rice and even some starches are a no-no for me.

@LivingwithFibro


Your story is soooo common. It's ok. We can get through this.

My story is here -http://forums.phoenixrising.me/index.php?threads/boos-healing-with-b12-journal.32813/


But I don't expect you to read all of it. It's just a journal to track my progress and reactions to supplements and perhaps let other people know that they aren't alone in dealing with the things I'm dealing with.

I will read your story tomorrow in detail! Thank you so much for taking the time to record your progress.

You hang in there, you will find strength you didn't know you had.


This is a good description of the Simple Methyation Protocol:http://forums.phoenixrising.me/index.php?threads/freddd-protocol-2014-cliff-notes.28718

@sregan Thank you so much, dear one!

Will read what you posted as soon as time allows and get back to you. Who exactly is Freddd btw? A practitioner, naturopath, doctor or a researcher like Rich?

Many of your symptoms can be linked w/ B12, although there are other causes as well. Always. Another good source of info for you to get started, gives you info on 2 B12/folate methylation protocols:

http://howirecovered.com/active-b12-therapy-faq/


You've come to the right place for help, and your attitude and perseverance are your biggest allies.

@ahmo - Thank you for the link. Will check it. I do not know much about methylfolate and b12 though...

@sregan That is really true and this illness forces you to find strength that you didn't even know you had. Thank you for reminding me of that.


@LivingwithFibro I have been posting here since June and this board has given me courage, support, new friendships, strength as well as solid medical info that has helped me on my journey and I wish the same for you.

@Gingergrrl I really hope that's true....