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~Chris.
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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 also think EMF / WIFI / Smart meters are the cause of many problems for immune suppressed people. For many years I had what I thought was “tinea versicolar” or sun fungus that you get from swimming pools as a child but I had it also as an adult. I started to realize this was a severe case of candida along with many other rising problems due to cascading effect of hormone imbalance, weak liver & kidneys and then I found out I had tapeworms, very large full-grown ones! About a year and a half ago, I was getting the same candida symptoms every time I ate something carb-like and had to cut out everything except for meat, chicken, fish. eggs, and vegetables. Practically overnight I was allergic to everything! And then I realized after getting more serious auto-immune reactions (not just candida flare ups) about 6 months ago that there was more going on than just candida overgrowth and I had to be absolutely impeccable from now on, NO CHEATING with the carbs. My body does seem to do well with spirulina/chlorella/ and olive oil or coconut oil (extra virgin only) and spices with some stevia. It’s important to take chlorophyl and also Cilantro tea (very important as it works with the spirulina to flush out the toxins from the body). Take it easy on this stuff as it is very powerful, ease up a notch each day if your die-off is not too strong.
Today, my blood test shows it needs to be cleaned due to all of the toxins from die-off and what has come out of my muscles and tissues and “leaked” through my intestines into my blood and lack of moving around (exercise and circulation). I feel great now even though I am a bit weak and I know I am getting better because various scary symptoms have gone away. Qigong is helping immensely.
My downfall was, I have been working for a year and a half now, doing deep cleansing some of which I admit was too hard core like 21 days of fresh squeezed oj and cayenne and 400 enemas! This extreme cleansing got out a lot of amazing gunk but also stripped me of my protective mucosal lining and whatever good flora I had left. Lemon juice as an enema I don’t think was good either although very effective for cleansing candida out over just water, it’s almost too harsh when you are extremely stripped from cleansing. I say, take it easy and slow and I am not sure about the conventional medicine or MMS, baking soda, or anything not purely natural.
Have you heard of Dr. Beck and “electroporation”? He discusses colloidal silver and electricity and/or the zapper which slowly kills candida. Now you can have too much die-off so it needs to be a REAL slow process. Electroporation is your cells pulsing out toxins from a pulsing of electricity.
Ozone treatment seems to be helpful too. I tried a clay body wrap a couple of days ago which made me flare up so I went under my ozone tent and it really helped the inflammation to clear up. My reactions seem to be getting less and less so we will see.
To be honest with you, I think this is what is setting me apart from the rest of the sufferers of this dis-ease. I am learning it’s all about balance and easing into each cleansing to make it part of your new regular routine. Cleansing teas and water only enemas should be helpful to move the toxins from the colon. I use only half an enema bag to get my system going, not the full enema until the whole colon is clean. I also ingest a TON of herbs and spices as I can’t eat any sugar along with my spirulina treats. Since trying this method, my system seems to be coming back into balance.
Qigong you can do in your bed with just your arms and believe it or not, doing these exercises in your mind is very effective to the body too. There are some great Qigong masters on YouTube to check out. It’s very relaxing, circulation and chi energy movements to breath deeply to. Your body needs oxygen and movement otherwise your electricity fades.
Aside from organic food (which I can’t get here except from my garden) I am skittish about seafood now that Fukushima and the Gulf are problems for the oceans. Find other sources like chia seeds for omega 3s and amaranth to kills candida.
And lastly, I even moved out of the city and live in nature for it’s nurture and balance.
Hi, Chris!
Your story is heartbreaking and I very well understand you, because I’ve been going through similar stuff lately, but at a milder pace. Have you tried Dr. Amy Yasko or April Wards (at autismnti.com)? Have you gotten your genetic tests to see if you have any mutations and if your methylation cycle is possibly blocked in many places thus you are barely detoxing? That is my next step. My take on it is it is all due to toxicity. I know you are pretty active on phoenix rising forum, but not sure if you have ventured much into methylation area. Please do. After a long research I have finally parked on t his issue and sense it is the root of our issues, considering that many of us have struggled with our health on and off since birth. It is genetic, well epigenetic. But environment (such as pollutants, to a degree, diet, supplements can be controlled). Please look into both of those practitioners. They both work with CFS folk, not only autism. They are very promising and talented at what it is they do and helped many severely affected people recover. It is terrible to see someone as young as you in such a condition and I hope you get well. Don’t lose hope.
Hi Teah. Thanks very much for the comment.
Yeah it seems many go through similar, and I have yet to find anyone worse or even the same level as me with it all!
I have been looking at Rich Van K’s work, which is based on Amy Yasko’s work, for a long time now. I take methyl B12, Methyl Folate and Sam-e or DMG, in very particular & timed doses based on my tolerance.
Agree with you 100% that it is all about inability to detox, and a great deal of that is to do with methylation problems. Without sam-e, dmg and b12 etc, I would be even worse, if that’s possible!
You’re also right on being unwell since birth. My story tells of that. Born with allergies and gut problems! Had intolerances and all sorts my whole life, and I guess with this sort of genetic makeup, had I KNOWN how severely it could effect me so early, I would have made alot stricter choices (like insanely strict) comparing to the very laid back choices I (and everyone else) made growing up, and in teen years etc. Unfortunately hindsight is the devil, and I despise it! So accurate it is.
I’ll never give up, have done so much, but it’s getting extremely hard with doing so much good stuff and still just getting worse. Thanks again.
~C.
Hi Chris. For CFS, please start looking into the methylation cycle. All the suggestions I read for your case in curezone are not what you actually need. Have a look at how the mathylation cycle impacts the nervous system and flows on to impact the immune system (T2 shift, autoimmune disease) and lowered liver function (due to low endogenous glutathione production).
You can run a methylation cycle panel via Vitamin Diagnostics in New Jersey, USA. You can then (very slowly) lift the methylation cycle block by using methylfolate and hydroxy B12 or methyl B12.
Hi Neil. Thanks. I agree re: many of the curezone suggestions don’t match my case, as I’ve already tried many of them in the past, they don’t do a great deal, or only help in a minor way.
Don’t need to start, have been researching and using methylation protocol for many years 🙂 I advocate it to many. I have severe methylation problems, seeing as most methylators have always made a significant impact on my biochem. I take tiny doses of Sam-e, DMG, then normal doses of Hydroxy/methyl b12 and methyl folate. This all used to make massive, brilliant differences in my health. Now at this severe level I’m at, they are barely doing a thing any more, or I just feel worse for ages, like im massively detoxing from it before it has a small benefit. Very upseting considering these things have been a life saver for me, for years.
Sorry, I just wanted to add that I don’t feel detox or lack of is the cause of the major problems. I myself have extremely poor liver function and doing detox hasn’t changed much in terms of brain function. I think the term detox is thrown around too much and I think it more has to do with biochemical reactions within the CNS.
Interesting. Maybe for some, but I disagree, as it’s been proven in many many tests through genova diagnostics, metametrix, healthscope pathology here in Australia that detox pathways such as glutathionation/conjugation, sulphation & glycation etc, is very low or dysfunctional, and in these patients toxin/neurotoxin levels are high. Methylation is in large a huge part of detoxification anyway, so indirectly, poor methylation IS poor detox. I don’t think it’s “The” cause, but it sure is a huge, integral part of it for many/most people. Genetically, some of us are just very poor detoxers, similarly with kids with Autism. Cant detox mercury = the root cause of 1000 different health conditions.
Hi Chris,What a horrible life story, I feel SO sorry for you! But sorrow won’t help you kick this “things” ass which you have been fighting daily! At this point, I just hope this comment finds you still ALIVE!!! If so, I hope you are experiencing some sort of healing,something,anything, showing positive results for you! Please comment back SOON, I am worried about your state of health, you are so young to be having this happen. I can not imagine what kind of diet or background your mother had while pregnant with you. Not to say your father or other family genetics are not playing against you here also, I’m just saying~ Sorry if I upset you, but one has to wonder. If able, I would like for you to answer a few simple questions,i.e., how long have you tried the salt water cure? and has your body EVER reached an alkaline Ph state? Dis-ease of any sort can not function/multiply/live, in an alkaline environment. Hope to hear from you soon! Take care Chris.
I’m still here, just. In major hospital in Sydney. The diet is not ideal at all of course. It’s not for lack of trying diet wise etc. It’s some major blockage or dysfunction in the liver & pancreas area imo. Especially seeing as I cannot detoxify anything any more. I’ve spent years trying to detox with clay baths, FIRs, full organic vegan diets including up to 3 litres of organic juice a day with a lot of green in that. Drinking alkaline water and even spoons of bicarb etc. Nothing has made a dent. It used to help mildly but I’ve still kept going down hill. My gut & immune system are wrecked, and I’ve taken the best things I possibly could for them. I keep losing muscle & the small bit I have left burns with pain constantly. I can’t stand how hard I’ve tried & still going down so fast, its extremely frustrating, to say the least. So far they’re only saying it will be a long slow road of tiny bits of exercise. Unfortunate because I’ve been trying that much as I can and its done zero to improve me. I need serious healing on the immune system & *something* to improve my failing energy.
*sigh*
So happy to hear from you Chris. Thanks for the update, but I am sorry to hear you are in the hospital again. Maybe this time they can figure out what the heck the problem is?.I have NEVER heard of someone not being able to detox, though I am convinced that if you could detox thoroughly, you would see SOME improvement that you could build upon. I think it very well could be a liver problem also;infection/virus of some sort maybe? I’m sure your liver enzymes/hepatic panel tests must be off the charts though, if that is the cause. At least that is the case with my husband.He too is ‘wasting’ away and muscle mass has diminished drastically in the last two years since his diagnosis of liver cirrhosis;following the removal his gall bladder. It is not an ‘un-unnecessary’ appendage as the doctors would have one to believe; it IS there for a REASON. Irregardless,positive thoughts are being sent your way. I sincerely hope that the doctors are guided to the answers which you are so desperately and diligently seeking. Take care, I pray that you are in good hands there.
Yeah I’ve heard from quite a few that can’t detox. Mostly the more severe me/cfs patients. It’s not a liver damage problem like cirrhosis is, but more a problem with liver detox pathways so it seems. Often low glutathione and a block in the methylation cycle causes the detox intolerance. I also have no doubt that if I could tolerate glutathione & other detox modalities I’d be well on my way to health. Also multiple low grade chronic infections / very sluggish immune system is keeping me down severely. I get a bug for 3-4wks then 1 wk off, then another bug, and its just killing my system. Need to repair immunity really badly & kill bugs.
Most definitely, kill the bugs! You are very well read and knowledgeable for being so young, years of research to get there too,I’m sure!!.Recovery SOUNDS so simple when you talk about it, I’m sorry that it’s not! So strange your body rejects certain essential vitamins and amino acids, I assume you are taking antibiotics for the infections then? So for the record,Dr.O’Hira’s probiotics are excellent, I have seen it stop many deadly infections in it’s path! I don’t remember if you said you are tolerable to probiotics or not, but worth a try if you can take those instead of the antibiotics, Of course, being in a hospital, it is hard to do that, I know. I had to SNEAK them into my husband, but the outcome was well worth it. One day I was thinking I was going to have to prepare myself, and make funeral arrangements, then within the next 2 days, he was out of there! You have had excellent nutritional guidance and exposure, that will always be a wealth of knowledge to build in the future,when you get back home! Take care, ur in my thoughts and prayers,
Hey Cris,
I was hoping to hear what your thoughts were on any of my experiences and suggestions which I think might be out of the norm to most people. And, because my first post was so wordy, there are definitely things I did not write about like vitamin deficiencies and bio-resonance readings.
Have you ever done a bio-resonance reading? This is a VERY INEXPENSIVE, NON-invasive, EXTREMELY ACCURATE body scan that reads every single thing going on in your body and can tell you EXACTLY what is happening with each organ, what toxins are in your blood, parasites, deficiencies – you name it! It is the ONLY diagnostic tool I use besides chi energy readings (or volt meter readings of the meridian system at dozens of acupoints), and also doing a blood test that I can see directly on a computer screen and discuss what we see with my doctor. All three of these cost me about $250 but it might be more expensive in your area. It sure beats hospital prices! And for the wealth of knowledge I am getting about what is happening inside (even emotional stuff!), it is well worth it!
You can google to find a bioresonance practitioner and a taoist doctor in your area for acupuncture and to open up meridian blockages that are keeping your body from detoxing. Based on ancient wisdom, he/she should also have chinese/ayurvedic medicinal herbs that can help you detox and rebalance slowly. I will tell you, this is what has saved my life and I have been close to dead already because of anemia on top of toxic blood that won’t detox!
I feel everyone has a piece of the puzzle and with group effort, we can find a means of rebalancing. I just lost a beautiful friend to similar complications, he was only 9 years old. I think the difference why I am still here and he isn’t is because of the electricity and colloidal silver treatments that have helped to keep the infections down. It works wonders for me and is my artificial immune system until I regain my own again.
Also, I am always exploring how nature corrects itself once it has the correct combinations to restore balance (ie remove all forms of toxins in environment). It is built into the divine intelligence of the universe.
I agree with Laura, pro-biotics (pro-life) instead of anti-biotics (anti-life). This is your immune system and if you wipe it out by taking anti-biotics, you will not heal. That is a fact that I have to keep reminding even myself to take my probiotics when I eat, otherwise I will get a flare up as the reminder! Make sure they are strong pro-biotics too as in 50 biliion or more and a variation of different strains of bacteria.
Take care. I hope this helps you restore some balance and regain some hope as I am,
Thanks again. Bio resonance can be good yes, i had some done a while ago and it showed many things. Mainly that my life force energy was extremely low. No suprise there. But in terms of helping my condition, it didnt offer anything too specific that really helped me much. Sorry about your young friend, that is no good!
Glad you are finding your way and rebalancing things. Sharing is certainly the way for us all to do it, as there isnt much medical help for these conditions.
Def a fan of good quality probiotics! Alone they never did much for me but in combination with everything else always an important part of things over all. 🙂
Hello, have you heard of the GAPS diet? The foundation of our physical and mental health is in our digestion. Maybe you got off to a bad start with your digestion and are not absorbing nutrients the way you should. The GAPS diet gets you digesting properly, and has even cured kids of autism. See what you think!
http://www.gaps.me/preview/?page_id=28
Also, Paul Jaminet is brilliant, he has a lot of insight into autoimmune diseases, having cured himself. He is an astrophysicist, but somehow he finds the time to answer individual health questions if you post them on his blog, as he is very compassionate. I suffered from adrenal insufficiency after eating low carb for too long, and he helped me.
http://perfecthealthdiet.com/
Good luck friend, you will be in my prayers.
Hey there. Indeed I have researched GAPS and SCD very much. However they are both diets that suggest moderate to high fat, and my liver just can’t do that, at all. I know all these wonderful things, from my study over the years, I am just in such a catch 22 when it comes to them. A diet of meat/bone broth and no carbs I would just fail. Ive tried low carb in the past and i have blood sugar drops and feel incredibly weak (more than even usual).
Yeah i’ve talked to Paul he’s good. Again his diet is high in fats and so on, and i can’t follow it. He aslo recommends supplements i can’t have. Very frustrating, as with most things in my life!
Thank you still, appreciated.
Hi Chris,
I have 3 ( I the mother and 2 adult children , daughter 28, she is my sickest and a son 24, they are both on the disability pension, my daughter since they age of 16) of us in the family with what you have. We are house bound and on an extreme diet , and two of us have a hard time eating at times.
Like you , undiagnosed gluten problem, guts wrecked by, Flagyl antibiotic and we lived in a high chemical area at the time (Hervey Bay,QLD) and the rest is history!!!!!!!!!!!
Like you, tried many things, but most we can’t , because of the MCS, but we have got on to a treatment at the moment we are tolerating,which is amazing in itself, it’s called
NES, by Peter Fraser , you can google it. There are NES practitioners everywhere, I’m sure you would find one near you. Peter had CFS and MCS and cured himself (these are the only ones that interest us these days).
So you all have CFS/MCS etc? That’s interesting mostly it doesn’t occur in entire familys unless as you say you have all been exposed to some sort of chemicals. Once the detox system has been overwhelmed it’s very very hard to reverse and begin tolerating things that might otherwise help. One way to do it if you haven’t tried is glutathione. If tolerated (and/or NAC) it can really turn ones life around. Many cannot tolerate it because the detox overwhelms the body, but for those that are low and DO tolerate it it’s often a literal miracle. NES sounds interesting I haven’t tried it myself though.
Hi Chris, I ran into one of your posts on Phoenix Rising. You sounded so much like me, I thought I’d write. I have been sick since December, bed-ridden completely until about two weeks ago. I can now take a few steps on a good day. I also can not tolerate even a lick of NAC or glutathione without getting really ill. Picking up even light objects has been difficult, but getting slightly better. I did 3 months of Valcyte, which is when I made all my progress, but it caught up with me and I can’t seem to detox so I had to stop and I’m in a constant herx. Itested positive for HHV6, not just the titres but actual viral DNA, with a high viral load. Anyway, how are you doing? I hope you have made some progress and are not in the hospital any more. Are you gaining any physical strength?
Hi there. I’m not sure what post you mean of mine on there, I used to be on there all the time. So have you only had CFS since December or have you just been in a bad flare since then? Also, I’m not sure exactly the order you mean here. Did you get sick with something, take Valcyte then make a lot of improvement? Or do you mean you made some improvement on it, but it CAUSED you not to be able to detox? That can happen to some people who are drug sensitive. It might help in one way but overwhelms the liver/detox pathways and makes the entire overall CFS worse. Personally for me every time I have had an operation and general anaesthetic it has made my entire condition worse for that very reason. Yeah that’s why the Valcyte helped you, seems perhaps your condition is totally viral based. I would at very least be taking high dose vitamin C every day, 6-20 grams powder as tolerated. It helps with any of these illnesses more than most things do. I haven’t been in hospital since 2012. I stabilized out a little even though my body runs at a lower function now. Very hard but I keep going. My physical strength can be not too bad but i still have zero stamina. I can cook now and then, do yoga exercise even a few pushups a day, but still mostly cannot do anything sustained.
It was a post where you described how you were so weak you could barely lift anything. Yes, I’ve only had CFS since Dec, so I guess our cases aren’t totally alike, but the almost indescribable weakness sounded similar. I got a viral flu-like illness in December and then my legs started going out and then one day I collapsed and then was bedridden for six months, it was complete torture, I don’t even know how to describe what I’ve been through, but you may understand probably. I could barely even get a spoon to my mouth and I wouldn’t bathe for a week at a time and even turning over in bed was horrific, it was terrible.
You are exactly right, I made improvement on Valcyte, quite a bit, but I could barely detox that stuff and it caught up with me and I couldn’t breathe, and I got an ulcer, and major inflammation through my whole body. I actually might go back on it at a lower dose because it helped so much, though, but not for a while. I can walk around the house a little, but I have POTS now since being sick, so my heart hurts when I’m upright and I gasp for air and my arms don’t seem to gain strength for some reason. Also my chest feels so tight constantly.
I started taking more and more glutathione, I’m up to a whopping 1/4 of a pill. I started acupuncture which helps a little if they put the needles in my back, not in my front, then I gain strength.
I am so frustrated for you… After reading your post and then finding your website I was hoping you were almost feeling normal. I didn’t expect you to be running a marathon or anything. But at least you are functioning a little. I know how after being totally unable to function that the smallest things like making a meal are pretty huge. I had to give up my apartment and move in with my dad and my friends moved my stuff to storage. I wanted to mention one thing I accidentally found helps with detox. I’m able to tolerate a small amount of dandelion root, which cleans out your liver gently and after two days of that I found the glutathione wasn’t as difficult to take. I’m not sure if that works for everyone, though. Anyway, don’t give up, it takes the neurological system a long time to heal, and as it’s healing the rest of your body has to catch up, too. Be patient, don’t lose hope! The fact that you’ve made some progress is a really good sign, it means you can heal.