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Possible CFS success story. Got much better after 4-5 years. Here's what has helped.

Discussion in 'General Treatment' started by arty0mk, Jan 10, 2016.

  1. arty0mk

    arty0mk

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    TL;DR: Went from about 20% of normal functioning to about 70-90% (100% being very healthy level of endurance and energy).

    Routines that helped: sleep, rest, gradual exercise, stretching, diet.

    Supplements that helped greatly: !!!St. John's Wort!!!, !D-ribose!, Melatonin, Phosphorylated Serine.

    Supplements that helped moderately: Krebs cycle acids (mainly: malic acid and citric acid), l-carnitine, digestive enzymes, caffeine (will explain below).

    Supplements that probably helped, but not sure how much: multivitamins, various vitamins and minerals (will explain below), omega 3.

    Turning point (positive) was triggered by: D-ribose, St. John's Wort and gradual, systematic exercise (walking).

    Here's the full story:

    Hi! I'm a 29 year old male that has been living with CFS for the last 4-5 years. English is not my native language - sorry if the writing is clumsy. I should start off by saying that I was never officially diagnosed with CFS because I had a negative experience with my doctor. He did basic blood work which turned out fine and proceeded to tell me that it was all in my head. He was rude and did not listen. He said I was way too young for what I was describing and that it was only in my head. Back then my mental state was vulnerable and this experience just scared me off and I never went back to talk to him or another doctor. That probably wasn't the smartest thing to do, but that's what's happened.

    Now, I should mention that I have been interested in topics of health, diet, healthy living, mental health, exercise, CFS (for the last 4 years) etc. for about 8 years. I have spent over 5000 hours researching various related topics. That's what I've been doing most of my free time for the last 12 years - researching different topics from health, diet and well being, to philosophy, religion and sciences. So when I didn't get help from a doctor, I was hoping to solve my CFS mystery by myself, considering how much research into related topics I have done and was willing to do.

    My CFS is probably described as a mild case. I was still able to function "normally" on the outside: I continued studying in the University, working part time and having some limited recreational activities, but it sure was very, very, very hard. I had to regularly skip classes, work for only a couple hours at a time etc. On the inside it was extremely, extremely difficult to function normally. The main symptom was of course fatigue. Morning to evening I felt tired. In the morning, getting out of bed was very hard. I had troubles falling asleep and became a super light sleeper, even though previously I used to sleep like a log. I was depressed and had 0 motivation to do anything. Living became a chore, a struggle. Waking up and falling asleep I was thinking that my life sucks, because I wasn't anymore able to enjoy it and everything was a struggle. I always felt either tired or wired and tired. Mental fog was a huge problem. It took extreme amounts of willpower to continue researching CFS. Was very hard to concentrate. I felt constantly anxious. Muscle and joint pain. Decreased libido. Lowered immunity. Migranes. Often felt cold for no reason. Light sensitivity. Confusion and anxiety in places with lots of people. Stressful situations were taking a huge toll each time. Mental and emotional endurance went down the drain. Etc and so on. It's a huge list that is familiar to anyone with CFS.

    What I think has triggered CFS was me being raw vegan for 4 years and possibly over-training. I have done sports my whole life and had crazy good endurance. I used to compete in swimming and tennis, did weight lifting for 12 years, regularly jogged for years, did various martial arts for years etc. I used to excercise 7 times a week, often twice daily for years before CFS with no signs of over-training and I had a lot of fun doing that - it was a benefit of going strict raw vegan. Endurance and energy were through the roof. Then some minor health problems followed and I got generally tired of such strict life style, so I stopped. Some time during the following year CFS has started and got to its worst point in another year.

    At first, I tried to rule out other conditions. Spent most of my time researching and trying various supplement protocols and diets. Things I've tried are numerous. By adjusting diet, supplement protocols and using some tools like blood sugar meter, thermometer, pH strips, blood pressure meter etc. it possible to rule out many diseases that can be confused with CFS like (off the top of my head): celiac disease or gluten sensitivity, leaky gut, gut disbiosis, some infections and parasites, food allergies, chemical allergies, pre-diabetes, insulin resistance, iron anaemia, b12 anaemia, various vitamin and mineral deficiencies and so on. After years of experimentation I haven't been able to rule out CFS or determine it's root cause. Perhaps I have reached a limit as to what can be measured and ruled out without expensive medical equipment with the exception of basic blood work, hair mineral analysis via Dr. L. Wilson and DNA report via "23 and me". However I did find plenty of things that have helped me.

    So, what has helped me. First I tried Nutritional Balancing (sent my hair to Dr. Wilson's practitioner), so we determined my mineral levels and I started the programme to correct the imbalances. I did that for about a year and I did see definite progress during that year. However I was still very far from being healed.

    I soon found out that I need plenty of rest, avoiding stress and exactly 8.5 hours of sleep every night.

    To combat insomnia I used melatonin and it was just OK, but it was still there. But then I was looking for a way to correct what looks like a cortisol spike in the evening and while trying various supplements, stumbled on phosphorylated serine (Seriphos) that has help my sleep greatly in combination with melatonin. I take 1 mg melatonin and 1 Seriphos pill 45 minutes before going to bed.

    To wake up in the morning and combat morning malaise, I found that exactly one large serving of green tea with breakfast made me feel good. I did of course try eliminating caffeine all together, but the symptoms of fatigue and mental imparement were unbearable without it, so I experimented with different stimulants, possible uppers like liquorice root and ginseng, and found out that a serving of green tea precisely once with breakfast is OK. I do realize that most often caffeine is a no-no, but I'm just describing my experience.

    For general energy level increase, I found D-Ribose to make an extreme difference in my well being. Once I have started taking 15 grams a day, my wellbeing has changed dramatically for the better and my energy levels have much improved.

    As general uppers, I found that Krebs Cycle acids give me an energy boost without a crash. I just eat sour fruits daily (citric acid) and apples (malic acid) when I feel a lack of energy. Sometimes I take malic acid as a powder with water. You can get it very cheap from a wine brewing shop. Just be careful not to burn your mouth, stomach lining and avoid contact with tooth enamel. So half to a single spoon of malic acid dissolved in a glass of water and never on an empty stomach. Also sometimes when I need a boost, I take acetyl-l-carnitine. If I remember correctly it boosts Krebs Cycle and helps cells generate energy. I take 1.5 grams once a day when I need it.

    Any kind of stimulants used to give me increased anxiety, but I have been able to GREATLY reduce it and most of my mental symptoms like brain fog with 1 supplement: St. John's Wort, standardized extract. It has done wonders for my well being to a point that I feel mostly healed. It has changed everything, including my energy levels and even response to exercise. To this day I'm not sure how it has been able to do so much good, but it did. If you want to try it, experiment with different brands. An older way of making effective St. John's wort extracts is to standardize for Hypericin. "Now St John's Wort" is what I'm taking and it works. A better and more recent way is to standardize for Hyperforin, like the Perika brand. I currently experiment with it and it does work better, but is more expensive. Also research has shown that not all brands are equal in terms of claimed and actual hypericin/hyperforin content, so if one brand doesn't work or work well - try another. Now brand has never let me down and recently Perika.

    St. John's Wort did give me one side effect, which is increase in migraine occurrence. But considering how much it has helped with everything else, I'll take migraines :). And they have decreased after a few months.

    I discovered that digestive enzymes make my digestion near ideal and take them to this day. I would recommend Healthy Origins Digestive Enzymes to anyone. They are the best in terms of price/performance that I have been able to find.

    I have tried Fredd's B12 protocol and followed it for about half a year. Initially my fatigue and a few other symptoms increased greatly but got back to pre B12 protocol in a few weeks. That should suggest that the protocol worked for me, but it didn't produce extreme results. I got better in this half a year, but that was also about the time I discovered D-Ribose which does help me greatly. I've stopped Fredd's protocol after half a year and the way I was feeling didn't change. However when I tried stopping D-ribose, I quickly got worse in a few days. So I'm not sure exactly how much this B12 protocol has helped me. Having been a vegan for about 4 years and then a vegetarian for a year, my B12 was probably pretty low, so it probably did me good.

    So in summary, I currently take: a multivitamin twice daily (Life Extension Two-per-day capsules), St. John's Wort 3 times a day, D-Ribose at 15 grams a day, 4 g omega 3 fish oil once with the evening meal, digestive enzymes with each cooked meal, acetyl-l-carnitine when I need it, malic acid when I need it (sour apples work just as well), melatonin and phosphorylated serine in the evening, 45 minutes before going to bed.

    As for exercise, I found that daily activity maintains my energy levels. Walking being the best. 30-60 minutes of walking or some other activity make a huge difference in how I feel. It has to be daily exercise for me and 30 minutes+, even if it's very light.

    So all in all, I've been feeling pretty good for the last half a year. A turning point was definitely St John's Wort, D-ribose and the discovery of 30+ minutes of daily activity. I'm now able to enjoy life again, study, spend time with family and friends, do sports (if I don't over-train) and other normal life activities.

    I think I should mention that I follow a healthy diet and have been for many years. A healthy diet is essential for good health. I've tried many extreme diets, but settled for something middle of the road. I don't eat junk food apart from occasional meal out. Eat fruits and veggies daily. I don't eat much sugar and drink about 3 liters of water daily. I eat products made with only unrefined flour. I don't usually eat bread. I don't eat too much meat. I minimize processed foods, because they often contain unhealthy additives, processed oils (trans-fats) and low quality oils. I minimise consumption of polyunsaturated fatty acids and omega 6's. Each of my meals contain: protein, fat and carbs, apart from a daily fruit meal or two. I don't snack (apart from fruits, which I consider a separate meal and a single apple after exercise). I eat very soon after I wake up and generally don't eat at least a few hours before going to sleep (and sometimes for 6+ hours before sleep). I eat soon after serious exercise. I consume only unrefined sea salt. I prioritise foods with low glycemic index. Those are the things that I remembered off the top of my head.

    I hope that my story will help someone to get better. I wish all the best to all suffering from any serious illness. No one has to go through what some of you are going and you are heroes for what you are going through! I wish you all of you to get better!

    Feel free to ask me questions and have a nice day!
     
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  2. gregh286

    gregh286 Senior Member

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    hi @arty0mk
    great story thanks.
    The serine is a great CFS supplement.
    Glad to hear your major improvement.

    Are you able to restart training again, or just light walking.?
     
    arty0mk likes this.
  3. minkeygirl

    minkeygirl But I Look So Good.

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    So am I clear you were never diagnosed with CFS/ME, you just think you had it based on Dr. Google and research?
     
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  4. arty0mk

    arty0mk

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    I have been able to restart training gradually and currently train 2-3 times a week with high intensity, and apart from that I do some exercises at home and walk when it's not too cold outside. I try to do at least 30 minutes of any kind of physical activity daily apart from walking, even if it's just wiping dust off the shelves, so that my whole body gets exercised. It takes 3-4 times longer to recover from exercise then pre-illness, but it used to be at competing athlete level, so I'm glad at the progress. I've done sports my whole life, so I understand how not to overtrain and not overexert same muscles too soon after training. Strategically planning my workouts certainly helps.

    Yes minkeygirl you are correct. Take my story for what it's worth, whether you believe that I have CFS or some other illness with strikingly similar symptoms and ways to start feeling better. I thought that whatever the case, I feel much better now and should write what my symptoms were and what my journey has been. I appreciate the sarcasm though :).
     
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  5. minkeygirl

    minkeygirl But I Look So Good.

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    I appreciate that you feel better. But without a proper diagnosis by a qualified medical professional you cannot say for sure you have CFS.

    There are plenty of diseases that have similar symptoms which is why we fight to get diagnosed correctly no matter how many bad doctors we have to see.

    Your title is misleading imo since you really have no idea what you have. I'm always suspicious of someone who just shows up with their protocol with things that most of us have tried years ago. There is no one size fits all treatment. I'm glad it worked for you for whatever medical issues you have.

    Cynicism not sarcasm
     
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  6. arty0mk

    arty0mk

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    I don't say that I have CFS for sure. I think that I do, but that's what I think. I made it clear in the original post that it wasn't an official diagnosis.

    Let me draw an analogy to help you understand my point. A person is giving out free food. A particular food has an annotation beside it: "cakes". One person approaches, takes the food and says: "thank you". An adequate reaction. Another approaches and says: "Yo, these are not cakes, these are pies. I'm suspicious of people with pies. I don't want you pies. I've tried pies years ago, many of us did. You've no idea what that food is." You're missing the point minkeygirl. I'm sharing my experience. If you have nothing to take from my story - too bad. I don't force it upon you. When I make a post I expect the reader to understand why I'm doing it. There's never too many success stories. Here are my symptoms, here's what I did to recover. Make your own conclusions.
     
  7. minkeygirl

    minkeygirl But I Look So Good.

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    I'm not missing your point. Perhaps you're missing mine? Yours is a success story. But for what? You say you think it's CFS but you still have no idea. If you don't want to mislead people then change your title and remove CFS.
     
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  8. arty0mk

    arty0mk

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    I expect people to read the actual post and not only the title, so I don't think there's a problem. Thanks for the feedback though.
     
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  9. Hope78

    Hope78

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    Hi!
    St. Johns Worth increases catecholamines and mainly serotonine (as does exercise). I really can't evaluate if you had "true" cfs or not (I don't know if that's the case for me as it did not start with a virus), but it sounds like your neurotransmitters were really depleted along with high cortisol.
    I guess most folks here get worse on exercicing, even if it's only moderate.
    But great to hear you're better, enjoy your health. Weather you had cfs or not, I am sure it was horrible.
     
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  10. SB_1108

    SB_1108 Senior Member

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    Every time I see someone posting about how they have made some (even minimal) improvements... these comments appear: "You probably didn't have ME/CFS to begin with..."

    I believe this is one of the reasons Cort left this forum and began his own forum. Its important for us not to discourage success stories. Senior members know that a lot of the treatments won't work for them because they have already tried EVERYTHING and new members/lurkers might actually benefit from the treatment(s).

    These success stories are important even if they do not apply to many of us because regardless of whether or not you actually have ME/CFS we don't have a way to properly diagnose it at this point and we are all just trying to feel better.

    @arty0mk - Congratulations on your improvements!
     
  11. Bansaw

    Bansaw Senior Member

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    Thanks for coming back and posting. Its nice to see someone break free of CFS; it encourages us.
    D-Ribose made me personally feel more fatigued somehow, and Johns Wort put me into a bit of a stupor but I looked up Phosphorlayed Serine and might investigate that more.
    With the Seriphos it says take it 15 min before meals, I see you're taking it before bed.
    I took an adrenal saliva test and my adrenals are flatlined all day.
    Problem for me is that my gut is out of whack and I have trouble absorbing regular caps.
     
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  12. minkeygirl

    minkeygirl But I Look So Good.

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    If you read the post, he says he doesn't know if he has CFS because he has never been diagnosed. I am only saying what he said, not inventing something.

    "I should start off by saying that I was never officially diagnosed with CFS because I had a negative experience with my doctor."

    He improved, good. But he nor anyone has any idea it is from CFS and that is what I object too. I could say "I cured myself of MS bey eating Rat poo. I don't know if I have MS but I looked on the internet and I have some of the symptoms" so I must have it.

    Saying in the title he has CFS is very misleading. Again that is my objection.
     
  13. helen1

    helen1 Senior Member

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    @Bansaw
    Please do your research before jumping into Seriphos. It lowers cortisol which is why it helps some people, those with very high cortisol and with sleep problems caused by high cortisol at night. But if you're already flatlined as you said this could make you worse unless you know you have high cortisol at night.

    Sorry kind of off-track.
     
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  14. ErdemX

    ErdemX

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    I don't think the absence of an official CFS diagnosis means something. I actually believe people who are diagnosed as CFS by a doctor have biologically vast differences between each other. I'm being treated by KDM and he never cared to use the label CFS. He is just trying to find the abnormalities and fix them. And I also don't think arty0mk is being misleading in any way in his detailed and sincere story.

    @arty0mk - Great to hear that you've gained your health again. I appreciate your effort to explain everything that helped you. I would definitely try St. John's Wort, but as a long time Cymbalta user, there can be dangerous interactions when used together :(
     
    Last edited by a moderator: Jan 15, 2016
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  15. arty0mk

    arty0mk

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    Hope78, thank you!

    Hey SB_1108 and THANK YOU! This person gets it everyone. She gets it. :)

    Success stories have helped me immensely to get to where I am from a very bad place. Whether those stories were from certified CFS patients diagnosed by penta-certified doctors is irrelevant. They had the story, the description of symptoms and what has helped ease or cure them. And this is why I posted my experience. The only reason I did it was that if there's even a slight chance that it would help someone, then it's more than worth the 4 hours that it took me to write it. Don't miss the forest for the trees minkeygirl.

    ErdemX, thank you!
     
    Last edited by a moderator: Jan 15, 2016
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  16. minkeygirl

    minkeygirl But I Look So Good.

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    Once again. I'm glad you feel better. What I said, again, is that I object to you saying it's CFS. You said you don't know if you have it. You haven't been to a doctor and I gather you've had no labs.

    So to say your treatment helped CFS is misleading. You helped "something" but you don't Even know what that "something" is.

    Btw, people who have been here more than half a minute and know me know I always joke and say I'd eat rat poo if it would help me.
     
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  17. Valentijn

    Valentijn The Diabolic Logic

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    @arty0mk - I'm sorry that your doctor was not more helpful. But I think you are very much incorrect in deciding that CFS was the culprit.

    ME/CFS is defined by a pathological reaction to exertion. Exercise does not help us. It makes us extremely sick for days or weeks afterward. If someone finds exercise helpful in recovery or in just generally feeling better, it is a very strong indication that they do not have ME/CFS.

    But not having ME/CFS is something to be grateful for, because people with ME/CFS don't recover with supplements, or exercise, or diets, or SSRIs, or anything else thus far. I'm glad you recovered, but I don't think it is relevant to people with ME/CFS.
     
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  18. arty0mk

    arty0mk

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    Did you know that in India you can officially get a PhD in Astrology? That is a PhD in telling people what their destiny is according to the position of stars during their birth.

    The cow in considered a holy animal in India, which has deep roots in Indian culture. Indian medical knowledge originates from Ayurveda. Ayurveda has been traced to oral traditions 5000 BCE and is considered by the practitioners to have been passed down upon sages by the gods, who have passed it down to regular humans. Ayurveda is alive and well today and up to 80% of Indian people use it. There are official Ayurveda clinics, research institutes and national counsels that oversee Ayurveda research. You can become a certified doctor and Ayurveda practitioner and open your own clinic - all legally. Since the cow is considered a holy animal, all related to the cow is considered holy and beneficial, including cows urine and manure, which is prescribed to cure various ailments.

    Quoting Sushruta Samhita: "Cow urine is bitter, pungent, hot, easily digestible, strengthens the brain, cure cough. It is destroyer of colic, stomach pain, constipation, itching pain, eczema, and mouth diseases. It destroys Vitiligo, Leucoderma, leprosy, basti rog. It cures eye diseases. It cures Amebiasis, dysentery, diarrhoea, all problems due to gas, cough, swelling, stomach diseases, is antibiotic, jaundice, spleen enlargement, ear diseases, asthma, constipation, anemia are fully cured. Amongst all urines, cow urine has maximum qualities. Thus, only cow urine should be used." Yes, that's right, to cure eye infections, you can get prescribed to drop cow urine into your eyes.

    Cow in India is called cow mother and once again is considered a holy, sacred animal that no harm should be ever laid upon. For that reason I find it funny that India is the largest exporter of beef in the world.

    Also, heavy metals like lead, arsenic and mercury are commonly used in Ayurveda. Many Ayurvedic medicines contan these metals, because it is considered that they act as a carrier to transport the active ingredients to vital parts of the body, like the brain. When I've been to India, I've bought some mercury containing pills in a local pharmacy. I think those were skin improving pills, but I don't remember. It actually says on the box: contains mercury, this much. I brought them home for giggles and I might still have them if I haven't thrown them out.

    No offence to Indians or Indian science. I just studied various topics related to Indian culture and I find some part of Ayurveda to be amusing.

    Also, did you know that in many many countries you can buy any degree and it will be official? Or you can buy a diagnosis for any disease and it will be official too. Or you can buy more or less any permit, certificate or official document. You'd probably be surprised in how many countries you can do that.

    So what good is my diagnosis if you don't even know where I'm from, or who gave it? I bet you would not have asked if I wrote that it was an official diagnosis. That's how much trust people have in authority, when quite often it is meaningless. In any country. A diagnosis is just a word. A title is just a word. What is important is what stands behind those words.

    Now, don't get me wrong, I'm not trying to say that CFS is definitely what I have. Which I wrote in like the second sentence of my story. I get what you and Valentijn are saying and I agree. I just thought it would be fun to mention that science and authority can be a meaningless façade, depending on context.
     
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  19. gregh286

    gregh286 Senior Member

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    exactly, just because some GP would have give out a diagnosis of CFS would the recovery story be any more or less credible?
     
    Last edited by a moderator: Jan 15, 2016
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  20. msf

    msf Senior Member

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    How many people on this forum have been diagnosed? Has anyone done a poll? I doubt it would much over 50%. I haven´t been diagnosed, even though I am being treated by the most famous ME physician in Europe, KDM. He hasn´t diagnosed many other people he is treating either, and to my knowledge has never told any of them that they are ´not like the others.´

    Then there are all the people who have basically been ignored by the health systems in their country, as I have been by the NHS, who couldn´t be bothered to diagnose me with anything. Are all these people not allowed to post their success stories on this website?

    I actually think the title is fine, especially since the OP uses the term CFS rather than ME. He did have some form of CFS, and I´m pretty sure he would have fit the Fukuda criteria, so what´s the problem?
     

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