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CFS, ME, CFIDS Support Forum

Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Chronic Fatigue & Immune Disfunction Syndrome (CFIDS), muscle weakness, cognitive dysfunction, hypersensitivity, orthostatic intolerance, digestive disturbances, depression, poor immune response, cardiac and respiratory problems, chronic infectious mononucleosis, epidemic myalgic encephalomyelitis, epidemic neuromyasthenia
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  • I found out I have Chronic Fatigue Syndrome AND Lyme Diseas...   NeedSleep   31d  C
     
    I’ve known that I have adrenal fatigue for over a year now, after I did a 24-hour cortisol test. I’ve been treating the adrenal fatigue but wasn’t improving, so I got tested for the viruses that cause Chronic Fatigue, including Lyme Disease. I found out that I have high, unequivocal scores for both conditions. I wanted to mention this to people on this board, in case you’ve been treating your adrenal fatigue for awhile and aren’t seeing results. It can take a year or more to recover from adrenal fatigue, so don’t assume you have something else if you aren’t recovering quickly. However, you ...   [retrieve this message]
    • CFS I feel can actually be part of the earlier stages of AF...   wiredgeneration   30d
       
      CFS I feel can actually be part of the earlier stages of AF, its the stage many late AF’ers actually want to get too. When I had CFS, life was sleepy and tired, parasmpathetic, but so much better that sympathetic AF. Theres a fair amount of research published on the two, Chronic Fatigue Unmasked by Dr Poesnicker from Clymer Healing Centre and Dr Lam has some videos on the subject. ... ... Believing CFS is post viral is old school research/knowledge. I am under the guidance of the biggest CFS specialist in London and while they agree once they felt all cases of CFS was post viral (by some of the ...   [retrieve this message]
  • Dark green or black flecks in feces   #182479   33d  C
     
    Wondering what the dark flecks are in my bowel movements. Picture was after one 2 qt salt water enema, then a Castile soap enema almost 2qts. They always come out and I thought they were just remnants of lettuce at first but they keep coming. Even after another 2 qt enema back to back. ... ... http://curezone.com/ig/i.asp?i=70205 ...   [End]
  • Hi and My Story with CFS and probably AF   TakeCare   50d  C
     
    Hi! ... ... I have been reading you guys for a few months now. I have learned a lot of things thanks to your experiences. ... ... I’m triying to fix my health. I always suspected I could have Hypothiroidism problems but my doctor told me my labs where ok. Researching on the net I learnt that ths, T4 and T3 doesnt say eerything about thyroid problems. So I want to get tested to Free T3 and T4 + autoinmune + reversed T3. ... ... I learn this in STTM web + other doctor’s info. ... ... Then I discovered that Adrenals are very important in this matter and if you have an adrenal problem you must fix that first. So ...   [retrieve this message]
    • I forgot about my temps. They usually are 36’6° C. But may ...   TakeCare   49d
       
      I forgot about my temps. They usually are 36’6° C. But may times they are lower. Sometimes at my worst days 35°. ... ... Also we tested positive for Epstein Varr and Citomegalovirus. At some point in our lifes. ... ... Someone just sugested me that maybe low carb is one of the problems. ... ... I take intoconsideration all the ideas. I haveseen that some people says is better for AF’s a high carb diet. ... ... But My glucosa levels were worst when I ate more carbs. And my digestion problems too. ... ... I think I have to fix whatever is making me not able to tolerate carbs and the eat a moderate carb diet. ... ... I d ...   [retrieve this message]
      • I have CFS and AF and I can’t tolerate grains at all. My do...   NeedSleep   49d
         
        I have CFS and AF and I can’t tolerate grains at all. My doctor thinks CFS has made me extra sensitive to the lectins in grains. I can’t digest them no matter how many digestive enzymes I take and they make me sick. However, potatoes are my friend! I also found the low carb diet I had been on made my CFS and AF a hundred times worse. Now I eat lots of steamed sweet potato slices and other root vegetables, and also eat white potatoes in moderation. I feel sooo much better. I also have to watch out for candida, but I’ve found that going too low carb actually   [End]
      • I have CFS and AF and I can’t tolerate grains at all. My do...   NeedSleep   49d
         
        I have CFS and AF and I can’t tolerate grains at all. My doctor thinks CFS has made me extra sensitive to the lectins in grains. I can’t digest them no matter how many digestive enzymes I take and they make me sick. However, potatoes are my friend! I also found the low carb diet I had been on made my CFS and AF a hundred times worse. Now I eat lots of steamed sweet potato slices and other root vegetables, and also eat white potatoes in moderation. I feel sooo much better. I also have to watch out for candida, but I’ve found that going too low carb actually causes me more candida because it ...   [retrieve this message]
        • Hi NeedSleep! ... ... Thanks for your idea. ... ... I le...   TakeCare   49d
           
          Hi NeedSleep! ... ... Thanks for your idea. ... ... I left gluten out of my diet and then grains, by listening to what was hurting my body. For me is not just grains the problem, is all starch. If I eat too much potatoes I do get dry gut and acidity. ... ... But for some reason I havent left potatoes out of my diet. I eat like one a day with other vegs and water and I do tolerate it ok. ... ... I don’t want to be too low carb or ketogenic. For some reason the idea that atracts me now is moderate carb. I will have to work on this, i.e. making meal plans with a macro calculator. ... ... Im going to read your experi ...   [retrieve this message]
        • I digest well white rice and a couple of legumes like chick...   Tena Cious   47d
           
          I digest well white rice and a couple of legumes like chickpeas. Otherwise, I seem to have the same problem than you with grains and some legumes. ... ... I wonder why is this? I have yet to try digestive enzymes again and see how I do (not that I would eat more grains knowing they are not particurarly good good for leaky gut).   [End]
          • For me wih rice and chickpeas is the same as with other gra...   TakeCare   47d
             
            For me wih rice and chickpeas is the same as with other grains. ... ... I can eat small amounts of rice like a few sushi pieces without problem. ... ... As yourself, I wonder why on earth now we can’t tolerate those things. ... ... For me the common sypmthom after eating grains is feeling really dry inside and acidity. Also hunger caused by the acidity. If I keep eating grains I get constipation plus my digestion gets very slow. ... ... So I tried while ago Enzimes with HCL plus Ox bile. Because my theory is that I lack some acid on my stomach and that makes me not able to digest grains. Plus it is somehow de ...   [retrieve this message]
  • Treatment for CFS Caused by Herpes-6 Virus   NeedSleep   56d
     
    I recently got tested for EBV, Cytomegalovirus and Herpes-6 Virus. (For those not familiar with this, it’s not the sexually-transmitted kind.) The first two were negative, but HHV-6 came up with a very high score of 1:1,280, where 1:80 or lower would be normal. I also have adrenal fatigue and a bunch of other problems, like most people on this board, but this is a big missing piece of the puzzle. ... ... Most people with high HHV-6 scores are treated with Valcyte but it’s very expensive and can be toxic. I’m wondering if anyone on this board has a success story with Valcyte or another drug or ...   [retrieve this message]
  • Effects of LSD on adrenals &or CFS   bozzy86   56d  C
     
    Hi there, ... ... Anyone know of any longstanding or serious effects incurred by taking acid on metabolic/endocrine (hypothyroidism) function, the adrenals &/or CFS? ... ... Also have Gilbert’s syndrome & EBV. ... ... Any feedback/experience greatly appreciated. ... ... Thanks ... ...   [End]
    • I have a lot of experience with LSD and I think it was a co...   #147592   56d
       
      I have a lot of experience with LSD and I think it was a contributing factor to developing adrenal fatigue. It is long-lasting, very stimulating and it encourages you to push past your normal limits and it mutes the body’s natural ’crash’ and exaustion signals, inviting you to exceed them. ... ... I think it can give very valuable insights to healthy people with strong adrenals if used rarely and in natural, daytime settings. But I do not recommend abusing it repeatedly, using it as a ’party drug’ or stimulant.   [End]
      • This sounds quite reasonable, 147592.   omo   56d
         
        This sounds quite reasonable, 147592.   [End]
      • Thanks for the feedback. That was my inkling. Couldn’t agre...   bozzy86   55d
         
        Thanks for the feedback. That was my inkling. Couldn’t agree more RE therapeutic benefits. Out of curiosity are you adverse to doing it at night as you mentioned that you are pro ”daytime settings”? What are your views on the occasional joint when suffering from AF?   [End]
        • I recommend daytime use for healthy people because staying ...   #147592   55d
           
          I recommend daytime use for healthy people because staying up all night forces the adrenals into 2nd and 3rd shift and exhausts them. I don’t recommend people with adrenal fatigue take any kind of stimulant. Including stimulating hallucinogenic compounds. LSD, psilocybin, 2c-b, DMT. All rock the neurons pretty hard. ... ... I think ganja is an adapotgen with a strong special ability to stimulate the parasympathetic nervous system. Can be safely & occasionally be used during adrenal fatigue recovery. Can be abused and overdone. The recovery goal is to sustainably, permanently awaken relaxed and ...   [retrieve this message]
  • Attack against CFS: antibiotics, antifungals or both?   studiotea   56d
     
    Hello, ... ... There are many protocols for trying to cure CFS and things behind it. Sometimes there may be parasites, sometimes candida, sometimes viruses or bacteria or god knows what. As for myself, the only thing that’s been found has been candida albicans, but now a doctor suggested taking a two month course of Doxyxycline (along with Difflucan) because he suspected there might be inflammation caused by bacteria and viruses as well. ... ... I did some research, but because most of my research has been about candida I don’t really know whether it’d be better to concentrate on candida, parasites ...   [retrieve this message]
  • FOR SALE: Plasmafire ALPHA V Cold Plasma Ozone Generator!!   Healthyguy1   57d  C
     
    Excellent, LIKE NEW Condition. This unit was only used a dozen times and kept in dry storage ever since. ... ... This is a Plasmafire International ALPHA V Cold Plasma Ozone Generator. ... ... I’ve owned this generator for less than a year and only used to it make ozonated water. This is a TOP of the line cold-plasma ozone generator that produces medical grade ozone. ... ... The unit comes with a 3 prong plug and Lifetime Warranty. ... ... Please go to plasmafire website for more information ... ... This item sells NEW for $3200 from the site above, plus shipping from Canada... I’m selling it for $2500. ... ... Please ...   [retrieve this message]
  • Prescript-assist update; new probiotic   tpno2005   62d  C
     
    It’s been a few months since I last posted so I wanted to give an update. As can be seen from my message history, my battle with candida has been incredibly long (going on 9 years) and bumpy. My manifestation of candida (profound neurological symptoms, sedation, fatigue, personality and memory changes) is pretty unique on the forums, and easy fixes have not worked for me. But I know I can’t be the only one with this form of chronic-fatigue-type candida so that’s why I continue to share my journey. And yes I know it is candida due to my body’s reaction to sugar deprivation and very specific ...   [retrieve this message]
  • Folate - Friend, then Foe!! Please advise.   Tiger Lily 813   63d  C
     
    Hi all, ... I’ve had severe adrenal fatigue for several months and I was trying to establish a solid b vitamin regimen, when I discovered that folate (metafolin, the active form- not folic acid) once daily at 1000 mcg, was the game changer I had been looking for!! I took it for almost two weeks, 1000mcg daily (I had also been taking coenzymated versions of B12 & B6 for a long while, without their doing anything at all but I stayed consistent with them in good faith) and it improved my energy levels, ability to complete tasks, mood, dream recall, finally!! Then, after two weeks it took a turn ...   [retrieve this message]
    • I’ve read that happening to quite a few people with methyla...   purplepixie   59d
       
      I’ve read that happening to quite a few people with methylation issues. It happened to me too. ... ... I think, if you’re a slow methylator that taking the active folate really gets things going again within all the methylation cycles (nitric oxide cycle, neurotransmitters cycle etc). So that’s why you feel great initially. ... ... Then there’s the about-turn of symptoms as you describe which could be then the release of years worth of accumulated toxins, and just the general balancing of these cycles once more after being so imbalanced and operating ’wonky’ for years. ... ... It’s just like with cleans ...   [retrieve this message]
  • Need some Transfer Factor advice   cfsnyc2013   66d  C
     
    I wanted to try transfer factor for my CFS and needed some advice, anyone out there have any info on the best source to get it from? My killer cell count low so hoping it can bring it up. with TF.   [End]
  • I increased my body temperature and became less sensitive t...   leggybrandi   66d  C
     
    I was VERY sensitive to EMF and solar flare energy and I increased my body temperature to 98.6 and sometimes higher and I don’t feel it as much. You can increase your body temperature by: ... ... taking coconut oil ... taking cayenne ... taking a thyroid glandular ... Niacin ... ... If you have this problem, give this a try and see if it works for you. You can test it by taking your temperature throughout the day. I hope it does! ...   [End]
  • Body trapped in time zone ? Circadian cycles ?   Jo86   67d  C
     
    Hey guys, ... I’ve had this enormous fatigue that started as a noticeable but very bearable ’jetlag’ feeling. Foggy brain, long time waking up after rise, slower in general... ... It happened as I came back from Montreal to Qatar, then went to France for the summer. Never stopped worsening since. That’s July 2006. ... ... A very strange thing happened last summer (September 2013). ... I was in France for the summer, and I started another hugely destructive phase of my fatigue where I just get much worse daily, noticeably. Like, things I could do a week ago, now impossible. ... The very thought of returnin ...   [retrieve this message]
  • Update on situation, eager for some news   Jo86   67d  C
     
    Hey guys, ... I haven’t posted on here for a WHILE because ... a) I still don’t know for sure if AF exists and if I have some of it or not. ... b) I’ve noticed none of the stuff that worked for many worked in the slightest for me. ... ... I’m on a gut-curing quest these days, trying to regulate sleep and digestion basically. ... I do continue feeling worse every day, and my 7 almost 8 year slope continues with no relief whatsoever. I can literally do nothing but computer these days. Can’t talk most of the day...brain fog and malaise and numbness at a maximum, never thought it was possible for the human ...   [retrieve this message]
    • Sleep and gut are key, you are in the right path. HPA axis ...   Tena Cious   67d
       
      Sleep and gut are key, you are in the right path. HPA axis is another key.I have found Propolis extract YS 6 capsules per day and Seacure effective at lowering intestinal inflammation. So I have found a diet comprised of natural food, no soy, corn, gluten and most casein (kefir and probiotic goat yogurt are good for some). Am going to try Colostrum and probably it will help a lot. ... ... Check out the forum ”Leaky Gut” in Phoenix Rising (best CFS forum that I know of). I have there a thread called ”My Gut Crusade”. Leaky Gut is a big cause of autoimmunity/inflammation, therefore a big cause of ...   [retrieve this message]
      • my DHEA-S has always been quite high. ... And my morning co...   Jo86   66d
         
        my DHEA-S has always been quite high. ... And my morning cortisol (saliva test, 2012) was pretty high with all 3 other levels during the day perfectly within range. ... As for ”leaky gut”, yes I’m still quite convinced there might be a chance. I’m trying to get this test done but it’s very hard to send urine samples out of Qatar...a test with Genova called ”Intestinal Permeability Assessment”. Perhaps you should look it up if interested ? ... ... Thanks for your message man, much appreciated. ... Are you feeling any better ?   [End]
        • Yes in fact, I have improved but keep in mind I was in the ...   Tena Cious   66d
           
          Yes in fact, I have improved but keep in mind I was in the absolute shit, so much that suicide was in my mind and what is worse in my will. Still is some days. I have improved from suicidal to still living a horrible life but is not longer as horrible as to make me want to kill myself. ... ... There are setbacks though, like today that I woke up with a headache and I look even more haggard. No idea why, maybe the probiotic yogurt is causing die off, it has been months since I woke up with headaches. ... ... The improvements are measurable in terms of sleep onset latency (melatonin sublingual), numbe ...   [retrieve this message]
          • I’m 27 man. Thanks for your detailed response. You seem in ...   Jo86   65d
             
            I’m 27 man. Thanks for your detailed response. You seem in a much better state than me if you can type all that, good to see ! ;) ... And it’s great you’re just 22 ! Hang in there man, you seem very mature and time is on your side. ... ... DHEA-S was very high in blood too. ... ... Yes I think diet and sleep, especially sleep, are basically all that matter. I do believe the HPA axis must be at stake too, ”in danger”. ... ... The thing about sleep for me is I can’t sleep early. It’s impossible unless I’m on meds. And melatonin makes all my symptoms a million times worse, so I stopped it just yesterday. I’m w ...   [retrieve this message]
            • My main and worst symptoms are sleep dysfunction (sleep ons...   Tena Cious   65d
               
              My main and worst symptoms are sleep dysfunction (sleep onset, fragmentation, refreshing factor), cholinergic urticaria and intestinal inflammation. From those derive a plethora of other symptoms, such as the famous fatigue, the famous brainfog and poor stress tolerance. ... ... It took me from 2 to 3 years to get to my worst and a year to stabilize and slightly improve. ... ... What has helped the most for my current state (which is bad but better than how I was, and that is really something with these degenerative diseases) have been focusing in sleep, the digestive system and psychology stuff. Es ...   [retrieve this message]
              • thanks. ... Could I ask you if you have (or had when it as ...   Jo86   62d
                 
                thanks. ... Could I ask you if you have (or had when it as at worst) any of the following: ... - extreme sensitivity to light, movement, sound. ... - people talking to you making you feel worse. ... - not enough energy to talk through the whole day, a bit better at night ... - feeling more cold than usual, like internal trembling ... - malaise, feeling awful, almost like pain but in your mind physically - or is your fatigue more like numbness ? ... ... If you don’t mind. Thanks.   [End]
  • Severely ill folks to send cards or packages to?   healthyartist   71d  C
     
    Hi lovelies! ... ... I just discovered this Facebook group and I wanted to know if you guys know of anyone who is bedridden/severely ill that needs support and loving kindness that might like to receive love/cards/gifts in the mail. I know that oftentimes, those that are the most ill are the ones that can’t post and have fallen off the map here. Please scan your memory for those souls and help me to get them added to the recipient list here. ... ... Also, the more gifters, the better. Join us! ... ...   [End]
    • This beautiful message from an admin there. Re: Severely i...   healthyartist   71d
       
      Via an admin there: ”I know that sometimes the pain is indescribable, as though bone is being ripped from bone. I know that sometimes you are running even though you are lying very still, because of the terror of what is happening to you. I know that sometimes it is so dark, and you cannot find the light however hard you look. I know there are weeks or months or years, when it is so continuously overwhelming, that you no longer count in hours and minutes. You count in heartbeats. You live your life breath by breath, because anything longer is impossible. ... ... ”I know there are moments when y ...   [retrieve this message]
  • Candida   lemover   79d  C
     
    What role or positive affect on the human body does Candida have on the human body? ... ... The reason I ask is I have an opportunity to acquire a round of Cancidas (caspofungin acetate) which will eliminate Candida from my entire body.   [End]
    • Hi Lem, ... ... As ”grist for your mill,” Dr. Douglas Grah...   shotsee   53d
       
      Hi Lem, ... ... As ”grist for your mill,” Dr. Douglas Graham says that we all [naturally] have the candida microbe within us, i.e. ALL of the time, and that it is a BACKUP mechanism the body uses when we are not producing enough adrenaline to remove excess sugar from our blood, i.e. the excess sugar causes the candida microbe to ”bloom” until such time as the excess sugar is brought back to normal levels. He further asserts that too much fat in our diet exacerbates this excess blood sugar problem, i.e. leading often to candidiasis/thrush, i.e. excess candida microbes in our body/blood. ... ... These ...   [retrieve this message]
  • Adrenal Fatigue& Hypothyroidism - Possible to heal with sup...   Nana86   83d  C
     
    Hi everybody, ... ... I´m suffering from CFS and probably also from adrenal fatigue. ... A lot of my problems solved already, but some thyroid issues occured recently, probably because of nutritional deficiencies and adrenal fatigue. I´m trying to cure them naturally (supplements+diet) but got some problems with that. Maybe somebody of you guys might help me with finding a connection between everything :) ... ... My story is: ... ... June 2013 I was bed-ridden for almost a year already and got high nitric oxide levels and a mitochondriopathia diagnosed (=low ATP-levels). In addition to that my doctor told ...   [retrieve this message]
    • Hey Nana. To both of your questions unfortunately the answe...   Tena Cious   82d
       
      Hey Nana. To both of your questions unfortunately the answer is no. Adrenal healing goes first and feeling worse is by no means a good sign, especially if it is not temporary. ... ... Seeya around and good luck, don´t forget us when you cure and post about it the Internet :) I sure will.   [End]
    • You should consider electromagnetic radiation (EMR)as the p...   foghead   60d
       
      You should consider electromagnetic radiation (EMR)as the potential cause of your adrenal fatigue. I was diagnosed with adrenal fatigue and fibromyalgia and had over 30 symptoms. The reason I had low hormone levels was due to my body and mind always in full alert 24/7 due to EMR exposure from Wi-Fi, cell phones, wiring in the walls called ”dirty electricity”, electromagnetic fields (EMF) from surge protectors/computers/fans and other appliances. ... ... I believe my heavy Wi-Fi use is what pushed me over the tipping point into becoming electrohypersensitive (EHS). My body responded by produ ...   [retrieve this message]
    • I was deficient in many minerals and had low adrenaline/ no...   grizz   52d
       
      I was deficient in many minerals and had low adrenaline/ noradrenaline levels plus very high histamine levels. ... ========================================== ... Nana, ... Your body is severely acidic. Measure your urine with pH Test strips. It should measure between 6.8 and 7.2 ... http://tinyurl.com/Iodine-PH-Levels ... ... If your urine measures 6.2 you are 10 times too acidic. If you measure 5.2 then you are 100 rimes too acidic. And 4.2 means you are 1,000 times too acidic. ... http://tinyurl.com/Iodine-PH-Levels ... ... Change your diet to repair acidity: ... It is easy to adjust pH by simple diet changes ... http ...   [retrieve this message]
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