A cry out for help...

[LivingwithFibro]

Welcome

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




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).

Hi @taniaaust1 Thank you for the welcome! I did drain myself responding to the posts though, haha.

Hmm, a nasal swab...interesting. As I said in my previous posts, I don't think these tests are available here and they are just TOO expensive for me to get shipped..

.but I'm torn between starting right away with a protocol based on my symptoms and first getting all the tests done so I can at least know what is wrong with me and what isn't. I'm not even completely sure if I have CFS or just FIBRO as I only have some of the symptoms ...or a MTHFR mutation of some kind as I tolerate huge amounts of supplements with ease. I have been reading lots of posts here lately from different people and I can see most didn't tolerate MSM, NAC, ALA or Glutathione very well yet I do - and in very high doses as well. Some days I'm fatigued and some days I have too much energy....


What exactly are the tests that I need? A MTHFR mutation one and a 23 and me genetic profile, that's it? : ) Is that the same tests Amy Yasko offers?


Big hugs to you! Thank you for your informative reply. Can I ask what line of action you are taking on your healing path?

 

[LivingwithFibro]

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.

Hi @cman89 - Thank you. I will try search for that post... I have a couple of questions; how long does one have to be on a methylation protocol? Is it a permanent cure or a transient one?

 

[taniaaust1]

@
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.

You should never assume things like D are fine without tests being done. I spent tons of money on so many supplements which didnt do thing for me (I must of tried about 30 different ones without any helping a bit) instead of getting some tests done to find out what I needed, I suggest not to make the same mistake.

Most who do have ME/CFS are deficient in D, some of us quite severely. I live in sunny Australia (I have tanned skin from sun) but get severely deficient even when taking standard supplement pill amounts of D, in my case I need far more.

Since I got tests done, I try the things which my tests indicate I need and since doing that, I have found half the things Im trying now help.

I too wonder from you lack of being able to gain weight and problems if you could have an endocrine issue (endocrine=hormone problem). I also wonder if you could have a missed parasite causing your lack of ability to gain weight. Do you know your average calorie amount you eat per day?

[quote] 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. [/quote]

I wonder if you have Celiac disease as part of your issues. This is often missed in people. The standard test sometimes misses causes and the gene test only shows if one is susceptable (thou it can help to rule it out if you dont have the Celaic gene). Some need a bowel biopsy done to see. What tests for Celiac disease have you had?


[quote] Who exactly is Freddd btw? A practitioner, naturopath, doctor or a researcher like Rich? [/quote]
Fredd is a fellow patient who's doing much better due to methylation protocols. He's been working on these and helping people with these and gathering knowledge in this from the time back when Rich was still around (People used to try either Rich's or Fredds but nowdays Fredds is probably becoming more common now that Rich is gone.

Anyway... Fredd has formed his own methylation protocol which many try and some get helped by.

 

[boo85]

@LivingwithFibro

It's ok. Thanks for coming back and updating us.

I know, it's really draining dealing with illness, isn't it? Mentally and emotionally it wears you down. Half the battle is knowing the problem. But when you don't know what is causing your illness, even just having a name to tell people or even yourself, it's hard... I feel betrayed by my body sometimes.

Personally, I'm really impressed by your resilience. You work seven days a week and have to cook and do other things on top of that? You're stronger than I am, really.

I understand what it's like to not want to cry anymore... But you aren't alone. You have us. If you ever feel alone and like you want to give up, just post here. I check this forum every day. Hang in there.

How long did you use B12 for and for how long? How long ago was it? How much B12 does your multivitamin have at the moment? Do you think you'd be interested in giving B12 another go? Have you ever gotten your B12 levels tested?

If you are able to get tested for quite a few things, that would be good because then people can take a look for you. But if you aren't able to get tested soon, that's ok. We'll just work with what we know. A lot of this is trial and error and if you are observant (which I think you are) then you will figure out what does and doesn't work for you.

Even though I got my 23andme results, everyone seems to interpret them differently. I've been given different advice just on B12 alone - I need to take very small amounts and then slowly increase, or I need to start on big doses and stick with that. Every body is different so it's not a one size fits all thing. But it means that it's in your control to try different things and find out what works for you.

Your diet looks really good to me. I was going to suggest that you cut out all grains such as wheat and rice, but you've done that already. Do you eat a lot of saturated fat? That would be my next suggestion. Do you eat dairy as well? How do you react to that? (You said you're from South Asia, so I'm not sure if you'd be lactose-intolerant unless you're from India.)

How long ago did you give up grains and start feeling a bit better? Sometimes it can take a while for the body to heal, a few months, but the fact you said you feel better is a good sign that you're on the right track.

 

[taniaaust1]

Hmm, a nasal swab...interesting. As I said in my previous posts, I don't think these tests are available here and they are just TOO expensive for me to get shipped..

Nasal swabbing is fairly standard kind of test thou not done much. Is your medicine culture there much different to the Western world??

I'm not even completely sure if I have CFS or just FIBRO as I only have some of the symptoms

You obviously have not just got fibro but do have something else/s going on here. You said that you were missing school due to being "too tired". That just isnt something a fibro patient would say... a fibro patient dropping out of things would be due to "pain" thou they get tired too but it doesnt dominant over the other stuff, the main complaint with fibro is the pain.

Some days I'm fatigued and some days I have too much energy....

Too much energy? Are you able to use that energy? or is it like a "wired" over stimulated energy feel in which when you go to use it, the energy just dies?

Big hugs to you! Thank you for your informative reply. Can I ask what line of action you are taking on your healing path?

Thanks .

Im not having much luck right now on my healing path as I cant get to my doctors and specialists, Im homebound if I dont have help to get out. (I have to often use a wheelchair due to ME/CFS/POTS).

Ive tried most things and nowdays are having to go the prescription drug route as all my associated ME/CFS conditions are out of control, herbal meds dont tend to help my case, I even get asthma now due to the whole thing. I do take also supplements for the MTHFR mutation and other supplements for deficiencies I have (some ME/CFS caused and others, I dont know why I have them.. genetic?).

Unfortunately Im on a lot of things (I think I take about 18 things) but they are all for things tests have shown I need. Pacing and aggressive rest therapy help me more then anything else.
.................

One thing you could try, its something I take but so far hasnt helped me but I havent been able to get back to my specialist for him to tell me to put up dose or what .. is Ashwagandha extract (its a herbal medicine).. this is used as an adrenal adaptagen (to help the adrenals).

Are you on anything at all for your depression?

 

[taniaaust1]

I have a couple of questions; how long does one have to be on a methylation protocol? Is it a permanent cure or a transient one?

Methylation treatments may need to be permanent, depends on persons issues I guess eg my MTHFR mutation is a lifelong treatment one, ones body with this is never able to convert folate to its active form so one is reliant on supplementation for the needed things methylB12/ active folate.

As to how fast the supplements help for that, my specialist said one cant expect them to work fast as afterall my body hasnt been able to function right due to my genetic issue all its life. Supplementation for that issue in me thou, certainly has helped me and in my case I did notice a change within a week with B12 injections (I now take my B12 under my tongue).

 

[cman89]

Hi @cman89 - Thank you. I will try search for that post... I have a couple of questions; how long does one have to be on a methylation protocol? Is it a permanent cure or a transient one?

It can be temporary or permanent. I apologize if the Fredd post is too long for you to search through. If you have any question regarding the methylation I can try to help sift through info for you. I'm no expert, but I can process info well.

 

[ahmo]

@cman89 I don't know which Fred post you linked, but I've compiled a lot of his info in a Guide, see my signature. I'm planning to do a revision in the next couple of weeks, esp. re taking AdB12 away from MB12, but it's current otherwise. Also a good guide to understanding methylation, not by me, linked.

 

[WillowJ]

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...

Hi, thanks. I just squeak into "normal" BMI right now. I have been down to BMI of about 16. Usually I do not get below 16.5. In most years I've been able to increase by reducing activity, and adding calories in something fatty that agrees with my GI system. Some fats make me feel nauseated, so I avoid those.

Actually the best thing for my weight that happened was getting on florinef (a blood volume increasor) for dysautonomia.

It is not necessarily the same for everyone. Some docs will order only TSH to screen for thyroid problems, but it may be necessary to order more than this one test (this assumes conversion between forms goes ok, and sometimes it doesn't). You should have 3-5 tests on there (e.g. TSH, T4, T3 or "reflex to T3", and possibly anti-TPO antibodies).

Yes, gut issues could cause this, though it sounds like you have already been tested for major causes. If you continue to suspect inflammatory bowel disease, there may be additional tests that were not run. See if you can get a second opinion from another GI doc.

If you did better on a restrictive diet, I would wonder about food intolerances. Probably not everything you were avoiding at the time. Are you able to keep a food diary? A dietitian might be able to help if you need guidance.

I do not know enough about methylation cycle to guess if this could be related. Low B12 can cause a lot of nerve issues, though.

 

[cman89]

@cman89 I don't know which Fred post you linked, but I've compiled a lot of his info in a Guide, see my signature. I'm planning to do a revision in the next couple of weeks, esp. re taking AdB12 away from MB12, but it's current otherwise. Also a good guide to understanding methylation, not by me, linked.

Go ahead and give that to the OP, i never actually linked anything myself

 

[boo85]

@LivingwithFibro

Hey, you ok?

 

[LivingwithFibro]

Dear, Boo. I'm okayish, decided to work hard and save up for tests. It's my next step. Will keep you updated.

 

[Morchella]

@LivingwithFibro

Hi! Have you ever read The Paleo Mom's blog? http://www.thepaleomom.com She's a biochemist who does a fantastic job explaining the science behind how various foods affect the gut and the immune system. I think you might find a lot of insight into your digestive troubles there. (I mean, it sounds like you've already done a good job of trouble-shooting things on your own, but more knowledge could make the process even more effective.)

 

[LivingwithFibro]

Guys, sorry for not posting or updating you...my symptoms have gotten 10x worse and am feeling more suicidal now. (I'm not clinically depression and don't worry I won't commit suicide but I keep getting more and more symptoms and I'm in a state of panic... which one should I deal with first?!

I have been heavily reading about CFS and all these conditions. There is a lump in my right breast too.

I am going to stop reading about health and trying protocols for a while and just try to relax... then I will take a line of action.)

I am going to try and post about my symptoms, never got around to doing that...

 

[ahmo]

@LivingwithFibro Be gentle with yourself during the holiday madness.

 

[boo85]

Guys, sorry for not posting or updating you...my symptoms have gotten 10x worse and am feeling more suicidal now. (I'm not clinically depression and don't worry I won't commit suicide but I keep getting more and more symptoms and I'm in a state of panic... which one should I deal with first?!

I have been heavily reading about CFS and all these conditions. There is a lump in my right breast too.

I am going to stop reading about health and trying protocols for a while and just try to relax... then I will take a line of action.)

I am going to try and post about my symptoms, never got around to doing that...

Thank you for updating. Don't worry, I was just checking how you are but I understand why you couldn't update before.

I'm really sorry to hear that your symptoms aren't so good right now.

What's the worst symptom you're dealing with at the moment?

Have you managed to get any test results?

Have you been taking any supplements or changed treatment since last posting?

Any idea why your symptoms are bad?

I understand about reading up on symptoms and getting anxiety from it. About the lump in your breast, honestly, it most probably is your anxiety getting the better of you. I once felt a lump in my breast, and I went to my doctor who referred me for a scan. I believe doctors are extra cautious with breast cancer these days, so regardless of what it feels like, they will usually send you for a scan since no doctor can rule anything out by just feeling in a doctor's office. So I went for a scan, not the scan where they squeeze your boobs, but more like an ultrasound. And I believe it ended up being just my rib.

However, if you're really concerned you can see your general doctor about it, but given your young age, I just want to reassure you that it's most likely just either rib or something else.

Please take care and be gentle with yourself. If you ever need to vent or talk or need advice, please post here. You can get my attention by posting @ boo85 (remove the space between the @ and my name though) and then select my name from the drop down list.

 

[WillowJ]

take care, @LivingwithFibro . You're right that you don't have to deal with everything at once.

 

[LivingwithFibro]

Thank you so much guys, I am back for now after adequate rest. Took a break from everything health related, tests, different diets, supplements.

Now I feel much more clearer and I am going to target the gut. I intend to do the Gaps diet. I am already taking lots of bone broth and gaps intro and my symptoms have cleared up 40%. I will update you guys further.

I intend to target the gut and methylation at first. I am not going to specifically target any of my "diagnosis" or glands in particular because half of the symptoms don't even match up. MDS, all they do is put us into boxes, we are all so different...

The lump in the breast wasn't cancer but a swollen lymph node, I was detoxing pretty hard I guess!

My approach will be to look at the body as a whole.

Thank you once again, I'm staying strong and amazed at my strength. I think it's all getting clearer day by day. I know now what to target and the course of action necessary.

 

[LivingwithFibro]

Here are some excerpts from Dr Natasha Campbell-Mcbride MD, (the author of Gut and psychology syndrome) on Methylation, Lyme Disease and Fibromyalgia, ME, CFS, and IBD and Crohn's. Let me know what you guys think.

Methylation
We did a test which showed that our son’s methylation pathway is not working because
he has a mutation on CBSC699T gene. Based on this test we were advised to cut down
on protein and sulphur in the diet, and to avoid fermented foods as they can produce
sulphur in the body. How can we implement the GAPS Diet if we have to avoid meat,
eggs, fish and fermented foods?

I would recommend that you read about the new science of epigenetics. Our genes are not
our destiny at all! Instead it is our diet and the environment (inside the body and outside)
that pre-determine which genes get expressed and which genes will stay dormant. The
character of toxicity in your child’s body will also affect genetics; it will change your
genes and their expression.

I have seen many parents trying to be very ‘scientific’ and that usually leads to confusion.
Our science does not know everything; it only provides you with a few little pieces in a
huge jigsaw puzzle, where most pieces are missing. Those few pieces can easily lead you
astray. Methylation is one of the most basic chemical reactions in the body involved in
hundreds of various functions. Most GAPS people, particularly autistic children, have
impaired methylation; it is blocked and altered by toxins coming out of the gut. In order
to restore methylation we need to remove toxins. In order to remove toxins we need to
clean up the gut, heal the gut wall and restore the child’s detoxification system. And in
order to do all that we need GAPS Nutritional Protocol, as far as I know.

Read more here.

Lyme Disease
Is the GAPS diet enough to eradicate Lyme disease or do we need to do something else
to deal with this infection?

Lyme disease is fashionable at the moment, as our medicine goes through fashions all the
time; all sorts of problems are blamed on Lyme disease today.

Lyme disease is caused by bacteria of the family Borrelia which are transmitted by ticks.
The natural hosts for ticks are wild animals, such as deer, squirrels, chipmunks, rabbits
and other animals. Borrelia has been in existence for a long time, possibly longer than us,
humans. Yet Lyme disease has become so common only recently despite the fact that
contact with wild animals is very minimal in our modern urbanised populations. So, what
happened? A very big thing happened in the recent few decades: our immune systems got
compromised by our modern life-styles and the environment which we, humans, have
created. A good demonstration of this is what is happening to the bee population in the
industrialised world: the bees are dying out. They are dying out from a couple of
opportunistic infections, which they used to be resistant to only a few decades ago.

Read more here.

 

[LivingwithFibro]

I have fibromyalgia/chronic fatigue and have been having trouble with ferments as
well as coconut oil. I heard someone say that people with this illness have more trouble
with ferments. Why is that? I was up to 1 and ¼ tsp of fermented cabbage juice and
when I increased by another ¼ tsp I experienced really bad die-off. After several days, I
started back at ½ tsp of juice and had bad die-off again. I am looking forward to being
able to get to a point where I can eat the cabbage itself. Why do I have to go so slowly?

Fibromyalgia, chronic fatigue syndrome and ME (Myalgic Encephalomyelitis) are the
most difficult conditions to treat. The detoxification system in these people is in complete
collapse. The toxins are not being handled by the disabled detoxification system, so they
impair the function of mitochondria in the cells. Mitochondria are our energy factories in
the body. As they are disabled the person suffers from severe fatigue, which is the main
symptom of these three conditions.

The detox system needs energy to function, so the
person is trapped in a vicious cycle of not being able to produce energy or detoxify.
As the detoxification system is disabled, any amount of die-off is poorly tolerated, as dieoff
increases toxicity in the body, and there is nobody to handle it. That is why people
with these problems have to go so slowly with increasing probiotics or fermented foods.
Coconut oil has anti-microbial substances and also causes some die-off. Try to modify
your GAPS diet according to your personal needs: move through the stages faster or add
foods which you feel will be good for you earlier, while avoiding those that are difficult
for you to handle at the moment. Please, read my article ONE MAN’S MEAT IS
ANOTHER MAN’S POISON on in the “Resources” section and follow its
recommendations.

Read more here.