What is Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and various other names, is a syndrome (or group of syndromes) of u...
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I wanted to share with you all an "herbal" remedy that has been really helping a lot of my symptoms. Before I get started I just to preface this in two ways, first I know a lot people are skeptical of anything that doesn't come from a doctor. Personally I have had to look beyond the doctors office for help for my problems... The doctors have consistently written me off (interestingly, my psychiatrist said he was almost certain my problems weren't anxiety/stress and that I had a biological problem or possibly poisoning - he wasn't sure, and I digress). Secondly, I have watched as my family has gotten burned by a number of rediculous herbal business over the years... against my better judgement. I know the false hopes of health and financial stability often accompany sales pitches and I just want to make this clear this is not me selling or endorsing any products in any way. I have found that the best things I have done for my health have largely been the cheapest things - vitamin d from sunlight for instance i think has really helped me. I didn't pay for it, but technically this is a sort of herbal remedy (at least the way I classify things!)
Anyway, I discovered this stuff called kefir - a fermented milk beverage not unlike yogurt or sour cream. Its made from tiny cauliflower like grains that contain trillions of live organisms. I just wanted to share what I learned about this strange and beneficial beverage... I have a scientific background and I tend to research everything ad infinatum. Also I don't buy my own... i make it myself. The kefir you buy is stores, while possibly better than yogurt, are NOTHING compared to the beneficial effects of traditionally made and cultured Kefir.. Its a probiotic. It contains about 20-40 strains of live bacteria and yeast. These are good yeast that are not pathanogenic and cannot hurt you. They will supress the bad yeast "candida albicans" and many other bad things that naturally occur in our food and stomach. The probiotics in Kefir are unique to other probiotics in yogurt and such. The ones living in kefir are part of symbiotic colonies of bacteria and yeast. When pathogenic bacteria come in contact with kefir they actually engage in chemical warfare.... bacteria and yeast are prone to this, and the strength of the kefir colonies is their diversity. Again, none of the bacteria in kefir are pathogenic... the stuff is reportedly great even for babies and elderly who have difficulty digesting food. Each different member of the colony has a certain set of chemicals it can produce - antibiotics - to destroy enemy bacteria. The whey of kefir contains many of these natural chemicals that flush out bad bacteria. In adition to the strengh of the bacteria and their ability to get rid of pathogenic bacteria... they stimulate the human immune system. There is a new and growing field of research analyzing the signal patterns associated with enteric bacteria - the bacteria of your gut. The makeup of the bacteria can stimulate the immune system, antigens on good bacteria end up being processed (in some cases I believe rexpressed on dendtrites and maybe helper cells, but don't quote me on this part) and stimulate a healthy immune system. These end up stimulating and regulating TONS of components of your immune system. This chart was taken from a review of studies and findings on the specific immune markers that some probiotics have on the immune system (from things like kefir, yogurt, sourkraut, etc... not all on the list are in kefir, and not all kefir bacteria are listed... ). This list though gives an idea of the potential for intestinal bacteria to regulate the immune system. Review of studies: * Strain, Immune markers/ cytokine target, target cells, (Inflamm Bowel Dis 2008;14:1585–1596) B. anamalis MB5 36 2ETEC-induced IL-8, IL-1, TNF, Gro-, et al 2ETEC adhesion Caco-2 B. thetaiotaomicron 75 1Barrier function 1p38, ERK1/2 MAPK and PI3K HT-29 Caco-2 80 1Angiogenin 4 Unknown Paneth cell in vivo E. coli Nissle 1917 71 1Barrier function Unknown T84 HT-29 74 1Barrier function Unknown T84 HT-29 77 1-defensin 1NF-B and AP-1 Caco-2 S. thermophilus 75 1Barrier function 1p38, ERK1/2 MAPK and PI3K HT-29 Caco-2 L. casei 91 2TNF-induced cytokines and chemokines 2TNF-induced NF-B by stabilizing IB Caco-2 L. casei DN-114 011 73 1Barrier function Unknown T84 LGG and soluble proteins 72 1Barrier function 2PKCand ERK1/2 MAPK Caco-2 76 1Hsp production 1p38 and JNK MAPK YAMC 82 2Apoptosis 1Akt YAMC 83 2Epithelial damage 2p38 HT-29 Colon culture 36 2ETEC-induced IL-8, IL-1, TNF, Gro-, et al 2ETEC adhesion Caco-2 90 2TNF-induced IL-8 2TNF-induced Caco-2 NF-B L. reuteri 88 2TNF-induced IL-8 2TNF-induced T84 NF-B HT-29 L. salivarius 89 2TNF-induced IL-8 HT-29 B. infantis VSL#3 74 1Barrier function 1ERK1/2 and p38 T84 1Mucin expression MAPK HT-29 2E. coli-induced IL-8 79 1-defensin production 1ERK1/2, p38 and JNK MAPK 1NF-B and AP-1 Caco-2 B. animalis 46 1Fecal sIgA in infants Unknown B. fragilis 59 1IL-14, IL-2, IFN-, CD4 cell expansion Retain bacterial PSA Dendritic cell E. coli Nissle 1917 58 1IL-10 Unknown T cell 2TNF, IFN-, IL-2 65 2Colitis in mice TLR2, TLR4 L. casei 52 1IL-10 Unknown Dendritic cell LGG and soluble proteins 47 1IL-6 Unknown Spleen cell 48 Moderate 1TNF, CL20 Unknown Dendritic cell 55 2TNF Unknown Macrophage 1 G-CSF L.gasseri 60 1IL-12, IL-18 Skew CD4 and CD8 T cells to Th1 and Tc1 Dendritic cell L. johnsonii IFN- L. reuteri LcS 57 2IL-6, IFN- Unknown Monocyte VSL#3 50, 51 1IL-10 Unknown Dendritic cell 63 2Colitis in mice TLR9 VSL#3 DNA 61 2IL-8, TNF, IFN- 2p38 MAPK, NF-B HT-29 Mouse colon in vivo Yogurt may contain at most five different species, store bought kefir has between 7-10 strains, but 30-40 are present in Kefir depending on the length of time its allowed to ferment. Also the ones in kefir can survive and are supposedly able to colonize the gut when yogurt and other have difficulty persisting. Also 500 ml of yogurt barely contains 1 trillion Colony forming unitts... Kefir usually contains 5 trillion. Theres more of them, more total strains, and they are generally stronger than any other probiotic. Another weird thing about kefir - parents with autistic children, those with anxiety disorders, sleep disorders, etc often benefit from Kefir because it is very high in Vitamin B, and Tryptophan. People on inteferon treatment experience many if not all of the same symptoms that CFS people suffer from. This is in part due to the effect of interferon on the processing of tryptophan in the body which breaks it into kynurenine and several other less desirable products. Tryptophan should be processed into things like sertonin and melatonin. Kefir has a calming effect on the body ... kinda like turkey at thanksgiving. To make the kefir you just take the kefir grains (1 tablespoon to a quart) and put them in a covered jar with milk overnight or for 24 hours. You strain the grains out of the kefir and then you can reuse the grains. The grains multiply. Fast sometimes, so you almost always end up trying to find people to give it to (you can eat the extras for aditional health benefits, they taste sour). You can even use the grains as starter for bread - it makes a good cooking yeast as well. The kefir has taken a huge chunk out of the severity of my symptoms ... decreasing the frequency and pain on my bad days. My father has had stomach issues for years - acid reflux and probably ulcers. He used to go through bottles of malox. Since he has started using it, he uses malox maybe once a week or so....Kefir bacteria break lactose down and most people can drink it even if they are lactose intolerant. Incidentally some pet owners even feed it to their dogs and cats. Cats are usually lactose intolerant by adulthood (something most people don't realize) and yet most cats can drink kefir without any difficulty. I've even given it to the feral kittens behind my house and they gorge themselves on it almost every day. The adults and little kitties both seem to love it. Well sorry for the long post, I hope this helps. If your interested in making your own kefir there are online communities. I got in touch with a woman who gave me some when we were on vacation - theres probably someone close to you that wouldn't mind giving you some... A lot of people that have extras will mail you their extra grains at the cost of shipping. Several offered to drive an hour to deliver them to me knowing I was sick. The kefir community is a very outgoing and generous one I have found. Most of the people are recovering from illness like CFS, Chron's disease, hepatiitis, and the list goes on and on. If you have any questions... just ask. :) Posted on 11/06/09, 09:11 am |
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also... one of the first and worse of my symptoms was nausea. I tried compazine, zorfran, finnegren, and several other things for this... I was given an iv for the zorfran in the hospital, but nothing stopped the nausea. When I started the kefir within one week I noticed the perpetual nausea had greatly resided and now I have very rare flare ups of it.... 
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I agree, there was a study recently that showed that people with CFS who took probiotics had a significant reduction in their anxiety, which was a totally unexpected finding- the authors of the study were looking for reduction in fatigue, etc. but it was anxiety that was helped.
I started drinking kefir and it really felt like it cooled my brain or something. I don't have an anxiety disorder, but I will feel really wired up. Kefir was almost like a drug in that it 'cooled' my brain down and made me feel really calm. Super nice. I was drinking some from a store but it also contains prebiotics(FOS/inulin) which I've heard conflicting stuff about and it kind of ended up making me feel weird so I quit drinking it. I've been looking for some to make my own ever since. One other thing that also does something similar is acidophilus pearls, which I started taking once or twice a week. The one thing I'm trying to work out is that vitamin D kind of makes me feel weird and milk from the store has vit. D, so I'm trying to think of ways to make kefir without the added vit. D. Someone else on another forum said you could put some in some half and half and make a cream cheese out of it. I bought some kefir(aka laban in the Middle East) that was like that and it was so delicious.
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i know what you mean about the vitamin d... I actually started taking 4000IU/day...its connected very strongly with innate immunity. I've heard of a lot of people saying that treatments make them feel worse before they get better. The first week It made my stomach sick for hours after I would take it. After this would pass I would feel much much better than I had before. The third week I had a weird pain in my chest, and had difficulty breathing. Vitamin D is actually hormone that we have evolved to take in large amounts through the sun. Nobody probably gets as much Vit D as we should and huge portions of our immune system apparently depend on it. All the weird initial worsening has passed now though and I feel much better than I did before... Vitamin D and Kefir have been my biggest finds in combating my CFS. N-acetyl-cysteine is a close runner up to the two.
I can say that each time I started a new supplement of the above three the first couple days to weeks was a bit rough. I would feel better overall, but I would have these few days where my symptoms would flare up much worse than they had been before the treatment. After a few of these flare ups it was like they stopped coming back.... I hate to sound so much like the Miss. Information character on south park... but it was honestly like I was flushing something out of my body. Who knows... maybe there really is something to the whole Herxheimer reaction stuff... I'm undecided, I'm just glad I stuck with these treatments until they started showing a benefit.
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oh ... just remembered ... I saw that original study and my mom started getting me Activia. I noticed some improvement, and started buying more and more probiotics. I was taking Lactospore, Activia, BB-12, and Bio Salud multiple times daily... these all helped some... but then i found the store bought kefir which was a jolt. Then I got the home made stuff and it was .
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I find this fascinating and it is going on my list of things to explore.
How much Kefir do you drink a day? In order to find the online Kefir community did you just google Kefir, or do you have some links you would like to share? And did I get it rght that the store bought helped at least some? (I get that the homemade stuff is more effective)
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well... I started off with small amounts and worked my way up to about a gallon a day. some people that have lyme disease claim that they get flu like symptoms when starting antibiotics for lyme, and I've heard some claim they have the same effect with kefir....I know the first couple days my glands swelled up more than usual and I felt sickish.... but after that I had signifigant improvement. So start of slow... supposedly we all harbor random strains of bacteria... some of them dormant... that release certain classes of poisons as they die...Normally there aren't enough to cause a problem, but if they all die off at once you can supposedly get a
"die off " reaction... its not the kefir... none of the kefir bacteria produce stuff that can hurt you, but sometimes they kill off other bacteria that take one final stab at you on their way out :) Dom''s Kefir Site is the absolute be all end all of Kefir making: http://users.sa.chariot.net.au/~dna/Makekefir.html Dom, the website owner has (had!) ulcerative colitis, but seems to have gone in remission from his use of Kefir. Kefir has a ton of uses and he seems to cover most of them very very well on the site.
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oh and derh...
i forgot to add... he lives in australia, but manages the Kefir_making group on yahoo(and listserv).... These people are all over the world and thats where I got my grains. There were three people within an hour of us that had them :)
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Thank You something I will look into.
We also have a natural alternatives group here on DS. http://www.dailystrength.org/group... Alot of us use both natural alternatives along with western medicine. Hugs
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Thanks for posting all this, I really appreciate it. I will definitely be looking into this, including the natural alternatives group.
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Sounds yummy! Not.
However, as a longtime CFS'er, I'll give it a try. You've presented some good points. Thanks for sharing. I live in a So. Cal. high desert and I garden. I get my blood tested 4 times per year (for potassium deficiency) and I've never come up short on my Vitamin D. My best supplement finds have been Glutathione (thru NAC), Choline (taken with pantothenic acid it makes acetylcholine) and Boswellia for pain.
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