Welcome..
Welcome to CFSjourney.org
Greetings! Chris here. 
This site is to share my personal journey & experience with CFS/ME (Chronic Fatigue Syndrome), Fibromyalgia and various other health problems that eventually led to Adrenal Insufficiency.
Having learned a great deal since contracting this in 2001, it is my goal to help as many people as possible suffering from CFS and related conditions – Fibromyalgia, Multiple Chemical Sensitivities, allergies & intolerances, candida, etc, through my personal experiences. Start by reading My Story
My story is in numbered parts on the right hand menu.
The other pages below them are articles, blog posts, videos, helpful links and resources on topics from CFS, general fatigue, toxicity, biochemistry, nutrition, latest research and a vast array of therapies and treatments. Also due to an overwhelming amount of people contacting me here, please be patient if I’m a bit slow. Or can arrange a Skype call. ~Chris.
Contact me: cfsjourney@gmail.com
If you don’t know what ME/CFS is, see my link to the right on “What is ME/CFS?”
Peace! ~Chris.
Click for My Story: | Part 1 | Part 2: 7 Weeks in Hospital | Part 3: Heart & ER | Part 4: Hospital Again – No Answers | Part 5: Long overdue update! 2012-2017
CFS Journey 
Hi Chris I am sorry to hear about your condition. I don’t know what therapies have you gone throu I hear about all the virtues of the Flax seed -cottage cheese, protocol, I have not experienced it, my husband has cancer and we are trying to adapt it to our way of life….but for what I’ve heard is almost miraculous. I wish you the best…May god bless
Chris my name is Jonathan. You need to get the mercury out. My friend Mary Ellen gave me your info and she will be contacting you as well. She is a wonderful person and is guiding me through mercury chelation. All three of our stories are similar. Healing cannot happen with all that hg in your organs. Stay close to FDC as they will help you. I will be in touch.
Hi Chris, I’m so sorry to hear of your suffering. I meant to answer you on FDC and AMC, but I sometimes move slow and thought I’d do so here instead. I’m a friend of Jonathons (see above) and we were both moved by your story. I think you are heading in the right direction with the amalgam removal and subsequent chelation that you are planning. As someone with CFIDS, MCS, severe allergies, Hashi’s, IBD, etc., it was a wonderful thing to finally figure things out (My Aha!! moments were when the holistic dentist found amalgams under three metal-lined crowns, and then upon my powerful yet successful first rounds of chelation). Keep in mind that your mother’s mercury burden is also your own, if you get in a doubting mode that your few amalgams could have caused the problem (check out Dr. Vimny, the U of Calgary and their work with sheep and amalgams). While I’d guess that chelation will be a large part of your solution (and I have faith it can happen), I can attest that the road is more difficult with immune system problems (by the way, the HPI that you tried that sounds as if it weren’t successful may work at a point where your immunity, both overall and at the cellular level in your gut, may be beneficial in your future (I’m hoping to try it in the near future)). A return to health can be accomplished, however, and I’m worlds away from when I was five years ago (and I’ve only been chelating for 1.5 of those years, because I was too sick to get my amalgams out before that). Because your case sounds so extreme, I’d also check out the Autism-Mercury group, because the parents have much good information and their kids are sick like you are. Please let me or Jonathon know if we can be of help to you. Many good thoughts to you on your journey, and we’ll be praying for your recovery.
Mary Ellen
Hello Chris
There are 2 things you can try right away 1. Is the zapper which is a device that can kill ALL forms of parasites by electromagnetic vibration. Just Google zapper for parasites and choose the one you can afford. A decent price to pay is around $200. 2. Get yourself something new called OSR which was formulated by Dr. Boyd Haley. Also Goole him and his product. Mercury poisoning is a drag but there is help out there. You can start with these 2 and I hope you will start to recover.
Hi there. I considered trying zappers – didnt do much for me years ago but couldn’t hurt to try again. Also I’ve heard of OSR, theres some conflicting info on it, but never tried it. Safter than the other chelators so it claims? Not a great deal of info around on it is all. Where is it bought? That seems hard to find too! Thanks.
There will always be many beliefs about the real cause of your situation and its importance to knowing the origin.
As there are so many symtoms in people this proves difficult.
What i would like to suggest is simple remedies that are very inexpensive and address some of the most common problems.
First, the focal point is to reduce some toxicity.. Clean the pipes before adding expensive things. Your body needs to assimilate nutrients first to get healthy.
This means digestion needs to be addressed.
All disease shares common environments of acidic blood, low oxygen, and circulating toxins. Tape worms and others excrete ammonia and other things that create a great breedng ground for all pathogens.
So, buy a box of sodium Bicarbonate.( Baking Soda)
Try mixing 1teaspoon in water and a pinch of lemon juice, or like me
Mix in 2 tablspoons of yogurt if you can tolerate.
Two times a day, empty stomach a.m.
Before bed p.m.
Mix well eat fast.
Its neccessary to get your blood and Lymph PH Alkaline fast.
You can also add a few pound bag of Baking soda to hot bath and soak for 15 minutes. If you can find bulk epson salt, add same amount.
This will help your skin and it will be absorbed.
You will notice a calming feeling.
Go online and locate a product called MMS. Real cheap and will kill of all those parasites and their friends.
Of course if you can afford to remove Mercury, then do it immediately.
If you can travel to a city where there is a china town, go.
Locate a traditional chinese doctor who does pulse diagnoses.
If he prescribes herbs and treats with acupuncture your winning.
These are very inexpensive treatments. Ask about foot soaking herbs to take with herbal drinkng teas.
This will get you going and get some energy back into you.
Eat lots of greens, for your body , steamed is ok, some raw as it is summer. Get a blender or juicer and make three green drinks.
Go online for ideas.
Your liver will need help for sure. Use herbs and sodium bicarb to get rolling. The pancreas will benefit from this too and be able to adjust blood sugar to stabalize energy.
Eat slow, spend time everyday visualizing your new body, shape and see yourself how you desire.
Here is te statement for you..
I love and accept myself Now.This is important for you, these issues will work against your emotions and mind, it does everyone, so begin to let this go. These are toxic thoughts too and are destructive patterns equally important as what you eat.
This will be the greatest thing you will overcome, and you will transform from this experience into a new individual.
Bless this journey. Its tough but not half as tough as you, so just go forward and you will show your self, your mind, and your internal chatter that with a little direction you will evolve a new person who soon will be helping someone else on their path.
Peace out!
Thanks Thomas. I agree with most of what u say. Ive also been trying to alkalize as its very important. Trying to get my digestion going seems impossible with the level it’s at.
MMS doesn’t agree with me, its like its very toxic or something. Some people it just doesn’t.
EDIT JUNE 2013: I had my mercury fillings removed last year and have been using chlorella/barley green, high dose vitamin C to try get some out. I have DMSA here in low dose but haven’t started yet, not sure i’ll tolerate but will try.
As for chinese practitioners, I a) can’t leave the house for any appointments, and I also can’t tolerate many herbs at all – they give me asthma and allergies, because of the salicylates and phenols. Its all a vicious catch 22.
Al the other things I am trying. Thanks again for a great post, its good info for all 🙂 ~C.
Hi Chris. If I were you, I would get to Dr. DeMeirleir in Beligum any way you can. Even if you need to get a loan or steal or crawl. He will test your stool for bacteria overgrowth and fixing that will help. Then, you might be put on GcMAF, which saved my life. Personally, things are serious enough for you that I would not waste my time on other things. Just my opinion…I have had this 20 yrs.
Best of luck
Linda
Hi Linda! If I could even crawl to a plane to travel overseas I would consider myself wonderfully well compared to now. I just could not at all get over there. I’m currently doing tests and consults with Dr Don Lewis in Melbourne. He works with Dr Demierleir and bases his treatments on the same methods etc. I have got some GC Maf from the Japan clinic, but havent started it yet. Low dose vials. I will try it out soon though, so glad you got imrpovement on it!
excellent. dr. lewis is excellent
Hi Chris. Did you try the GMAF? When I flew over to New York to see one of the world’s leading CFS specialists, he was doing it. He didn’t put me on it though, he started me on another treatment protocol.
Hi Meez. I didn’t actually! I think when I had it I was so very sick that I was concerned about having a bad reaction. Any bad reaciton would have been devastating for me back then. It’s been in the freezer ever since but I don’t know if it would be any good now!
I can imagine you were concerned about any bad reactions (like herxing). I get like that too. When my treatment protocol was fed-exed from America I waited 2 weeks to start and then when I moved house I stopped the protocol for a few months (to try and recover from the move, even though the protocol was probably helping) and all the injections went off! Yeh not sure how long GMAF would last.
Keeping you in my thoughts and prayers Chris. May everything you need come into your life and everything you don’t leave it. Peace, Love and Harmony, Bev
Hi Chris, I am thinking I delete my earlier comment. You are very gorgeous, brave and strong! Keep up he good fight and kuddos with what you are doing. I have a degree of CFS/fm so I do share some of your pain but I am sorry for you suffering. The lack of attention from the medical community is disgusting and I pray for CHANGE! Be blessed! Melissa
Oh my god bro every time i try and post on here im so tired and i post and then forget my password and end up wasting all my energy!!! Anyways Chris You need to have the correct diagnoses before you treat the issue right? You have TMS. Read one of Dr. John E. Sarnos books and dont buy another supplement or pay for another therapy before you do so. He has three it doesnt matter which one you can order one on audio and save your life. Stop listening to all this false diagnoses stuff and just read the book. All of them. People are being healed all over the world just by the knowledge contained. Dude I hope your mind is open enough for this. You sound freaking miserable. Email me with any questions. daonstream@yahoo.com
p.s. Im sorry if my earlier post contributed to confusion I knew not what I was doing.
Hey there. No worries, lol. Yes I agree there that we need the right diagnosis. However TMS does not at all seem like it would cause everything i’ve got to this severe degree, no chance. Back problems? Now I know they can cause various issues but not to the point that I’m at. I understand alot of the mechanisms behind whats going on with me, mainly poor detoxification pathways, poor methylation, and over reactive immune system to name some of the main ones. I will listen to the audio and check it out, but I just don’t think it is ‘the answer’, or I would not be this ill. CFS/ME is a mystery theres no one simple answer to it. But anyway, do appreciate and will check the info, thanks.
Thanks Melissa, appreciate the comments 🙂 Yeap there needs to be massive changes in medicine here for sure, as it stands its all up to us to do it ourselves. Hope you find some relief and improvement for your situation too!
Hi Chris, I’ve also have been struggling with CFS for the past 20 plus years and I am now 39. Never had the best of health, but believe this may stem from heavy metal toxicity. Have you seen any improvements thru chelation therapy? I’ve been trying anything and everything to help out, but much like yourself it’s like two steps forward, ten steps back. Very discouraging. I am now looking into support groups to find more answers. Thanks for any info on your situation. I wasn’t able to access your story.
Hi Deb. 20 years, damn, tis a long haul this illness if we don’t find the right treatments isn’t it. I’ve heard of people coming miraculously good after a year or two of chelation. I havent started yet but have recently got my amalgams out (been in 14 years), and will start on super low dose DMSA as per Andy Cutler protocol. Not sure how I’ll tolerate but its the next thing to try. Most chelators including even zeolite have made me feel super toxic and worsened things. Hoping I can do the dmsa, because I know that a significant portion of my problems is likely to do with heavy metals/mercury. It’s not just that we have the metal exposure, perhaps not even to a high degree, but that we cannot detoxify and eliminate them efficiently at all. Our detox pathways are often faulty or dysfunctional. This is what makes us so sick. It is discouraging indeed, but we can only keep trying the next thing! You can try clay baths, i’m even sensitive to those now! However they draw out metals through the skin wonderfully well. Bentonite clay – 1/2 to 1 cup in a bath, along with a cup of epsom salts and a cup of bi carb soda.
Hi Chris and EveryOne,
Recently learning more about the Methylation Cycle and how interference with it can cause a depletion of Glutathione and other vital end products which is very necessary for proper immune function.
Of course immune function is most important for dealing with CFS. Taking methylcobalamin (B12) and methylfolate plus B6 and TMG in a product called Homocystex Plus and notice an immediate improvement in energy levels and a feeling of well being. It is important to get the methyl form of B12 and folate for many people (60%) who have issues with the methylation cycle. Can be genetic or caused by heavy metals, toxins etc. Seems like a very important piece of the puzzle for many with CFS.
Methylation is one of the BIGGEST most important things going on with us. Especially the non detoxifiers which is many of us. I am only hanging in there via a few things, and one is refining my methylation supps. That one sounds interesting. I dont really tolerate TMG well, but DMG is very helpful and one of my must haves. Going to write a page on methylation some time soon. It sure is blocked for many.
Thanks for the tip on clay baths, that’s something I haven’t tried. I think you’ve got a good point about CFS being mostly the result of poor detoxification pathways. I have found that coffee enemas are helpful in preventing the toxins from backing up. (Sorry for the TMI.) I have also incorporated chlorella tablets directly before and after to ensure nothing gets reabsorbed. You just have to be careful with the chlorella since it can stir up the mercury and then you end up with more toxicity. I hope you had the amalgams removed properly. I failed to do my homework when I had all nine replaced four yrs ago and had them removed by a conventional dentist who took no safety measures. And then my health seemed to get much worse. I hope you find the answers that you need, thanks for sharing your experiences.
Indeed Deb & thanks. Try the baths because they can be a huge help. I had mixed results from coffee enemas. They sometimes gave me a bit of a lift but mostly they were just exhausting and too hard on the nervous system. I was drained for half a day/night after one. I certainly got my amalgams removed properly by a holistic dentist. Very expensive but worth it. They used rubber dam, high speed suction & external oxygen supply. Very careful. I didn’t worsen at all after it. But I feel so bad I can’t tell what’s what most of the time, lol.
Hi Fella,
I truly appreciate what you are going through as my health rapidly declining in a very similar path to yours. I’m not as far advanced as yourself but I’m about 70% there.
I have very slow gastric emptying with left and right abdominal ache, ache over the liver/gallbladder, the feeling of food coming back up the stomach, nausea, no appetite, weight loss, almost complete food intolerance (fibre, starch, fruit, grains, eggs, dairy, yeast, fermented foods, nightshades), constipation, undigested food in stools, an overwhelming feeling of toxicity when food moves through my colon, huge gas and bloating, pale stools lacking bile. I have complete supplement intolerance due to poor liver clearance and the gastroparesis.
My adrenals are currently being hammered, evidenced by a morning cortisol that is in the Cushings range. Having some output is of little benefit however as my nervous system is too unstable to detox, I’m unable to get more than 3-4 hours sleep a night, experience frequent breathlessness and panic attacks, experience nervous system instability with ‘relaxing agents’ such as magnesium or cortisol lowering supplements. I can currently walk, although my calorie deficit is contributing to an ever increasing weakness.
I developed MCS about 5 months ago and have been in decline since. My health was very poor before that point but at least relatively stable. A similar experience to yourself where you felt sick but determined to get on with life. Since experiencing the gas leak that triggered my MCS, I’ve had chronic shortness of breath, worsening insomnia, lack of stability on a low carb diet, worse brain fog and spreading to pretty much every chemical you can think of – gas, perfume, petrol, cleaning agents, VOC’s, smoke, burning smells etc. Every breath feels like a raw, cold burning sensation in my lungs.
I’m also dehydrated despite adequate fluid intake and experience unstable blood sugars, made worse by the gastroparesis. I have dry eyes, frequent urination, kidney/adrenal ache and some thirst although not excessive. My adrenals are in overdrive trying to maintain homeostasis. I feel I’m not far away from a complete collapse.
I haven’t had any serious surgical procedures, but am declining anyway. Nor have I really taken much medication, however the small amount of medication I have tried (puff on an inhaler, painkillers) has made me instantly worse.
People close to me who I describe this to think I’m being negative, but as you will know better than anyone else, there is no way out from it. Having a paralyzed stomach and digestive tracts makes nutrient absorption impossible, let alone taking any supplements and detox.
It makes me feel a little better knowing there is someone else out there like me. Hope you are trucking on. Getting through each new day is a battle won for the likes of us.
Hey Matt. Interesting to hear your story too. No good that you’re similar, but of course it’s good not to be alone with it.
I’d say i’m almost completely food intolerant, theres not one or two groups any more. Im starch, fat and protein intolerant, lol. Fruit, nuts, meat, eggs, anything & everything. I’m almost totally supplement intolerant too except i’ve worked out a few things that I can do which are absolutely keeping me going. Those things are super low dose methylation supps, and high dose vitamin C. Big difference without them, I’d go back to completely bedbound/dysfunctional. I was trying to force myself to try lots of ‘great’ supplements, and they just werent being utilized and making me much more toxic. I felt better once I got rid of nearly all of them.
I’ve not found anything that really helps the MCS, except high dose vitamin C. It helps *somewhat* but im still super sensitive if exposed. As for calories etc, I have stabilized my weight at least by a partial elemental diet. Going to write a page on this soon, as many CFSers cannot process food properly, and I found that amino acid based elemental drinks have allowed me to get enough protein in and more calories that I otherwise could absolutely not. If we could just improve liver processing/digestion, pretty much everything would improve! That’s the huge challenge though isn’t it.
So true, every day survived is a triumph in this fragile state.
Hey Chris.
There were some positive things in your post well done. I know you probably still feel like death but tolerating vitamin C is a positive step, as is an elemental formula. You’ll know all to well about the full body benefits of vitamin C.
My diet is fully liquid at the moment and I’m looking into elemental formula’s. As I’m sure you can attest to many of them are loaded with sugar or hard to digest compounds or allergens so it’s tricky.
Finding an amino acid formula has been my number one priority in the hope of getting some bassline nutrition, but so far I have struggled. If your anything like me, high density nutrition from food such as bone broth or fermented foods cause significant gut and liver issues, maybe due to the mycotoxins and methylation. Did I read you were based in Australia? I’m in the UK and the range of supplements/foods/doctors is a little lacking compared to the US. I’d fancy my chances for recovery over there, especially in a warm climate.
What sort of supps do you take for methylation? I know it can be a minefield to negotiate, especially if you stimulate the wrong pathway when it’s not ready. I’ll be honest and say I don’t have the brain power to investigate and process all the information regarding methylation and what to do. Apparently MCS (in some cases) is due to over methylation. For me, I always thought I had a problem with histamine (from fermented foods), which would make me an under methylator and I fit the symptoms better. Years ago I remember taking TMG and found it helped mildly with anxiety. Not sure if it would help these days.
If you do find the strength to be able to write a post on your elemental diet, I would be massively interested.
Wishing you good health.
Matt
Man, do you still have amalgams? Without removing them you won’t get better. Proper chelation afterwards. Good luck!
Nope, got them out as mentioned in other comments. I should update soon because I seem to be repeating alot in replies 🙂 but yeah got them out in August after my last longer hospital stay with a holistic dentist. No chelation yet, looking at extremely low dose Andy Cutler. ALA made my brain burn severely for 2 days of one small dose!
Hi Chris,
As far as I know, the underlying cause of CFS/ME is still unknown by scientists, and as one of the common symptoms a severe food sensitivity problem has been developed for most of the CFS/ME patients.
I wonder whether you have tried baking pasta as a bread replacement from gluten-free flour without using yeast.
Would that improve CFS/ME patients’ condition?
Have you tried drinking still, neutral (ph 7) mineral water, which is very low in minerals, especially in calcium (Ca)?
As far as I know, if calcium is not absorbed properly, then it might lead to arthritis, cardiovascular diseases, or osteoporosis.
As some of the CFS/ME patients suffer from similar problems, I was wondering whether drinking such kind of mineral water would perhaps prevent some of those patients from worsening their condition, in case their system can’t absorb calcium properly.
I am not a doctor, so please double-check everything what I wrote with a doctor. Your doctor shall be able to tell you whether or not it makes sense at all.
Chris, please never give up. All the best and good luck.
True it’s still unknown. They kind of should be looking at it differently to other illnesses though, because ME/CFS is a complex disorder that doesn’t have one single cause. There are many causes, possibly hundreds that lead to the exact same systems being effected. It is THAT, which we have in common. Whatever the thing is, the genetic weakness or susceptibility we have that eventually breaks through once the body is overwhelmed with either stresses, viruses/infections and so on (the individual ‘trigger’), is the thing they need to look for.
Why are certain individuals fine for a while then one part of the system really breaks down and allows the entire cascade of CFS to happen? The energy/production loss, disautonomia, endocrine and immune disruptions, methylation cycle blockages, etc. We weren’t born with these issues but a big even triggers something that occurs and causes the disorder of these systems to occur. Hopefully they will realise and focus on that soon enough, and perhaps a common factor will be found so targeted treatment can be developed.
Gluten, yeast and dairy free is a MUST for CFS patients. These are the things that overwhelm *any* human body that has even a slight chronic illness. They are very reactive, clogging substances that will hinder the bodys ability to flow and heal. Gluten free is a minimum, even better is grain free. I have found a high raw vegan diet to be the most helpful thing that anyone can try with this. When your detox pathways are overwhelmed, the body needs the very easiest things to process, and that happens to be fruit and vegetables. Making vids on this soon. It’s what has kept me going.
Hi Chris, My sympathy to your issues. I know your life, because at 46, I have lived this life of monotonous bleary eyed CFS, Chronic health issues, and just up till last monday, quite close to what felt like the door of no return, …..tests, tests, inside outside upside down, and BLAST, the doctors insisted that I was under stress…….WTHeck!…..They forced seizure meds, antidepressants all to no avail. Anti depressants are designed to only be taken for a max of 9 weeks, else you acquire Tardive Diskenesia…..ANYHOWSY, I saw your page in my research for B12 deficiency. http://www.pinterest.com/pin/398498267001303635/
I am now taking B12 Methylcobalamin, at 6,00mg daily with folic acid. 46 years of seizures and weirdness / fatigue,,,,,, is suddenly turning around. GP’s refuse to observe the blood tests accurately, and accept only what they know. Please take a slow look at the video link. My eyesight, light sensitivity, hearing, balance, stair climbing, pain, dizziness, appetite, stress tolerance are MARKEDLY IMPROVING DAILY. Please do not ignore an opportunity to turn your life around, and purchase the B12 from iherb.
Genetics plays a major role in my family, with the death of so many before the age of 46, last week a cousin in NY died at 24. I have just evaded the death sentence that runs so strongly in my family. May the Lord grant you to live 2.
if you’re having digestive problems dont rule out parasites esp protozoa. consider pure gum spirits of turpentine. many people having good results with this on a very low dose but research it first. also MSM/sulfur makes it difficult for parasites to attach to the gut lining.
good luck.
I has all the same bullshit symptoms. And i hate doctors bullshit so i learned about the human body in 2 years and solved it myself. Doctors are fucking idiots.
For me anyway, its either HHV6 or CMV because famciclovir didnt help hardly at all but Valganciclovir that i bought online from india fucking was a miracle. Cuz inwas even taking hydrocortisone and tried fludrocortisone cuz it seemed my adrebals were malfunctioning, i had exercise intolerabce (which must be anxiety i suppose, fucking ignorant doctors), I would get chest pain, and Id get nerological symptoms. And i read CMV infects, heart, adrenals, brain, and gut, oh and i had massive IBS diaharea thatbwas stuck in me that i used to have to push out manually on my stomacu it was sick. And im HIV negative so fuck the doctors who think these viruses are just worrisome to poz people.
I found out my ADH (anti diuretic hormone) or vasopressin was over releasing which happens in encephalitis and CFS is like low grade encephalitis. I know this was happening cuz around the start of symptoms i stopping urinating as much as i used to no matter how much water i drank.
ADH will save free water and dilute ur sodium causing hyponatremia and causing chaos in body. My testicles were perminately damaged and when it was happening doctors didnt care they were in horrible pain everyday and i onow now it was the free water trapped in them causing ischemia. My testicles are now half the size they were and testosterone is lower.
ADH is a huge problem in CFS/ME espexially if it is one of these 2 viruses cuz its provably what causes most of the fatigue. Yet my sodium levels at soctors were always normal but not if i was moving plus my body carried loads extra water weigjt cuz i obviously had low grsde ascities, bloated all the time and never ever thirsty but drank anyway cuz i thought i should. So the other invaluvle drug for me was micro doses of Tolvaptan also bought from india. But Valganciclovir was the hig one that wiped out all the heart and adrenal symptoms and i think even helped get rid of some excess water. The problem is these 2 drugs are expensive ones.
Thank god for doctors like Jose Montoya at Stanford university for sgowing his sucess with valganciclovir actually almost curing CFS patients. And CFS/ME is worse than HIV im sorry, id ratger have HIV anyday! You get a ton of help and pop a pill and ur fine and can go conplain how hard u have it when CFS patients suffer and wisg they were dead when there are meds to help.only no doctors have any heart or fucking brain to want to try it makesnme wanna puke