Discontinued thread

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by Soul*, Mar 7, 2015.

  1. Soul*

    Soul* Well-Known Member

    I just had the flu and haven't felled better in ages then during that. The brainfog was still there but the ME fatigue had seemed to be gone.

    I was just tired from having the flu but slept well, it was restorative and I was just upbeat without much effort at all. It actually felt 'good' having the flue compared to how I normally feel with the ME.

    Does anyone else with ME recognize this?

    I hoped it would have pushed a reset button that would allow me to feel better after it all too but after a few fever free days the horrid strangling debiliating ME fatigue is back again too.

    I so much more prefer to have the flue then this... It almost feels like once the body is done attacking the flue intruder which it is supposed to do, so felt 'healthy' it is now full blown attacking the healthy parts again since it has 'nothing better' to do.

    Disappointed that it hasn't improved anything whilst feeling so much better WITH the flu and during it. But most of all I wonder what is causing this or what is the explanation behind feeling better with flu (fatigue wise) and feeling so much worse when the intruder has been taken over and dealt with again....

    I understand that recovering from the flu takes time but that's not what this question is about. The question is, why do I feel better WITH flu then without it...???

    It's just weird and makes no sense so I hope someone else can make sense of it. Or if you have ME and have the same experience that in itself is helpful to know too.
  2. ljimbo42

    ljimbo42 Active Member

    @Soul*- I have done quite a bit of reading about the th1-th2 balance in the immune system with cfs. The two arms (th-1 and th-2) work like a teeter totter, so if one arm is up, the other is usually down.

    Often in cfs the th-1 arm is low which causes the th-2 arm to be high. That can create auto-inflammatory or auto-immune like symptoms. The th-1 arm of the immune system is the arm that deals with things like cold and flu viruses, and is usually low in cfs. My best guess is that when some people with cfs get a cold or a flu.

    It activates the th-1 arm of the immune system bringing it up and the th-2 arm down, which brings the immune system closer to a normal balance- helping to relieve symptoms. Reishi mushrooms are said to help raise the th-1 arm of the immune system (therefore lowering the th-2 arm) and is helping me. Here are a couple of links that connect cfs and a high th-2 and low th-1....


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  3. Soul*

    Soul* Well-Known Member

    Thank you so much, I will definitely look into this. It is a bit over my head but some things you are explaining seem to make sense with what I experienced so worthwhile looking into!
  4. ljimbo42

    ljimbo42 Active Member

    You are very welcome-best of luck to you!
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  5. IanH

    IanH Active Member

    Reports of how the flu and cold affects people with ME/CFS and FM are mixed. Some describe your experience of milder ME symptoms during the flu for several days. However others report a considerable worsening and lengthening of the symptoms of the flu and no post flu improvements in ME symptoms. And yet some others have reported a few days of ME symptom reduction followed by a worsening/lengthening of the symptoms of flu.

    Eg. see some reports on the internet here


    There are various explanations but no real knowledge about this.

    ME/CFS is a relapsing - remitting illness where the immunological markers of the illness change over time. I have heard some who have had ME over 20 years say they have had both of these experiences over the years.

    It may be a function of Th1-Th2 balance but I suspect it is more due to specific cytokine changes during the flu. When you get the flu, a substance called IFN-gamma rises quickly and your natural killer cells are highly activated to kill the virus.

    Normally if you have had ME/CFS for more than three years IFN-gamma and NKC function is badly affected. ie if measured as part of your ME/CFS. What no one has yet done is to see what happens to IFN-gamma and NKC function in a person with ME/CFS and the flu. I suspect that IFN-gamma and NKC function improves FOR SOME PEOPLE and this may lead to a reduction in ME/CFS symptoms, particularly more sound sleep.

    A second explanation is:
    While this is happening other viral epitopes (markers) are also reduced for a short period of time, ie your immune system is reducing other viral products and possibly active virus as well. Unfortunately this is temporary because the non-flu virus (usually one of the herpes viruses) remains intact because it is a latent virus).

    Not all people with ME have viral epitopes related to the ME (eg they do not show heightened fragmentation of RNase-L, a marker of ME where it may be caused by viral infection). I suspect that those people don't get any benefit from the flu-infection and experience a prolonged flu because their IFN-gamma and Natural killer cell response remains blunted during the flu and removal of the flu virus is slow.

    A recent paper has shown that the early phase of ME (first 3-4 years) is marked by raised IFN-gamma and highly activated Nat. killer cells but after this time it moves into a more immune-fatigued state. This state change can also a Th1-Th2 shift but is more complicated than this.
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  6. RadioFM

    RadioFM Active Member

    This is a good conversation and there are some interesting theories being described. The virus may be up regulating IL-10 -modulating other cytokine markers. I take Chinese skullcap at bed-time to achieve this affect. See links below:

    Interleukin-10 Therapy

    "Mosmann and coworkers (Fiorentino et al., 1989) first described a cytokine that is produced by T helper 2 (Th21) cell clones and inhibits interferon (IFN)-γ synthesis in Th1 cell clones (Fiorentino et al., 1989). Today this “cytokine synthesis inhibiting factor (CSIF)” is known as interleukin (IL)-10, and although we also know that several immune cells produce IL-10, macrophages are the major source. Investigations during the last decade showed that this cytokine is of crucial importance for immunoregulation and led to its use in first clinical trials."

    1. Macrophages are required for influenza virus infection... "Monocyte and lymphocyte surface-expressed viral antigens have been demonstrated after exposure of unseparated human mononuclear leukocytes to influenza virus in vitro." www.ncbi.nlm.nih.gov
    2. "Role of macrophage cytokines in influenza A virus infections." www.ncbi.nlm.nih.gov/pubmed/8125516

    "Chinese skullcap contains a compound, Baicalin, which may favorably alter the TH1/TH2 balance in asthma..."

    CONCLUSION: "Baicalin may modulate the Th1/Th2 balance mainly by alterating the gene expressions of GATA-3 and STAT-6 in vivo and increasing the production of IL-10."

    See more here: www.greenmedinfo.com

    "Baicalin is a multi-faceted and highly beneficial compound, I highly recommend you look it up on Google Scholar and peruse the multitude of studies. Yes the studies are highly technical, but reading the Results and Discussion section is usually enough to gain an understanding of the compound, which comes from Skullcap, and has been used for 1000's of years in China."

    "Baicalin also induces T-Regulatory(Treg)differentiation. Differentiation is the term for how the body directs the maturation of naive T cells into various mature T-effector cells. In this case though, Baicalin induces differentiation into Tregs, not T-effectors (via the Aryl Hydrocarbon Receptor). Tregs control and suppress various pro-inflammatory cytokines in the body responsible for Th-1 mediated immune response (cellular) and Th17 (the worst, it is implicated in virtually all auto-immune disorders). Hence the anti-inflammatory nature of it. Tregs and Th17 share the same differentiation pathways, so if you are inducing Tregs, you are not inducing Th17 response, which is really beneficial."

    "What Treg's do is induce a Th-2 mediated immune response (humoral) which is why its a potent anti-inflammatory. Ironically, even if your body is in a heightened Th2 response already, Treg's will balance it out and prevent over-expression of even that. (probably due to cross-talk with B-regs) Allergies are the result of an over-expressed Th2 response, so modulation of Th2 will help with that."

    "Taking Beta Glucans will also alleviate allergies as it will shift you from a Th2 response to a Th1 response."

    See more here: http://www.amazon.com/Baicalin-Powder-Grams-0-71-Pure/dp/B007IPZPUK/ref=cm_rdp_product
    Last edited: Mar 19, 2015
  7. IanH

    IanH Active Member

    "so if you are inducing Tregs, you are not inducing Th17 response, which is really beneficial."

    Things are never quite so simple in the immune system.

    It is not quite correct to say that if you inducing Tregs you are not inducing a Th17 response. The purpose of Th17 cells is to release IL-17, a pro inflammatory cytokine but this can be driven by Tregs.

    When activated in the presence of the proinflammatory cytokines IL-1β and IL-6, human Tregs within the CD4+CD45RA−CD25highCCR6+HLA-DR−FoxP3+ population produce IL-17.

    IL-17+/FoxP3+ Treg clones retain suppressive function and exhibit the plasticity to secrete IL-17 or suppress depending on the nature of the stimulus provided. IL-17 production by these Treg clones is accompanied by sustained FoxP3 expression and concomitant, but reversible, loss of suppressive activity.

    So under inflammatory conditions a subset of in vitro suppressive FoxP3+ cells can be driven to secrete IL-17. This dampens suppression and promotes an pro-inflammatory milieu.

    For the effect of this on inflammatory disease models see here for example:

  8. RadioFM

    RadioFM Active Member


    Have you look into the possible benefits of N-acetylglucosamine?
  9. RadioFM

    RadioFM Active Member

    What does sugar metabolism have to do with autoimmune disease?

    "It is changes in sugar molecules that cause T-cells to become hyperactive and trigger autoimmune disease – including multiple sclerosis. In this condition, the abnormal T-cells direct the immune system to attack and destroy the myelin – the tissue that insulates the nerves – causing symptoms of numbness, fatigue and even paralysis."

    "Several studies have shown that glucosamine and glucosamine derivatives increased sugar modifications to the proteins on the outsides of T-cells, suppressing their hyperactivity and reversing the development of paralysis."

    "In an animal study published in 2005 in Journal of Immunology, neurologists at Jefferson Medical College found that glucosamine suppressed the T-cells that cause brain inflammation, dramatically delaying the onset of multiple sclerosis symptoms and substantially increasing motor abilities. The mice given glucosamine had less inflammation in their spinal cords and less damage to myelin than mice in the control group."

    "In a study published in 2011 in The Journal of Biological Chemistry, n-acetylglucosamine inhibited the growth and function of abnormal T-cells and suppressed autoimmune response, leading researchers to conclude that glucosamine could have applications in treating multiple sclerosis. Beta-interferon, a mainstream medical treatment for MS, must be given by injection; the team noted that glucosamine, by contrast, is convenient, painless to administer, and inexpensive."

    Has glucosamine been studied in other autoimmune conditions?

    "In a small clinical study published in 2000 in Alimentary Pharmacology and Therapeutics, two thirds of a study group of children with treatment-resistant inflammatory bowel disease improved substantially after two years of treatment with n-acetylglucosamine. Studies to explore glucosamine’s potential for treating IBD, Crohn’s disease and ulcerative colitis are ongoing."

    "No significant side effects were reported in the studies, giving rise to hopes that glucosamine could be a safe, natural, inexpensive and effective way to treat autoimmune disorders."

    See more here: http://beforeitsnews.com/health/201...e-may-reverse-autoimmune-disease-2533190.html
  10. RadioFM

    RadioFM Active Member

    What about other Interleukin-10 supplements?


    "We examined effects of N-acetyl-d-glucosamine (GlcNAc) on rheumatoid arthritis (RA) mouse models and effects of GlcNAc and glucosamine hydrochloride (GlcN) on several serum cytokine productions in RA mouse models. SKG/jcl mice were divided into control, GlcNAc, and GlcN groups. For 56 days, the control group received normal food, the GlcNAc group received 0.5 % GlcNAc-containing food, and the GlcN group received 0.5 % GlcN-containing food. GlcNAc and GlcN equally suppressed arthritis scores and histopathological scores compared to the control group. In the GlcN group, serum tumor necrosis factor-α and interleukin (IL)-6 concentrations were significantly decreased compared to the control group. In the GlcNAc group, serum IL-10, transforming growth factor β-1, and IL-2 concentrations were significantly increased compared to the control group. Our results indicated that GlcNAc also has suppressive effects on experimental RA in mouse models. The results of serum cytokine concentrations suggested that compared to GlcN, GlcNAc has a different suppressive mechanism in experimental RA models."

    See more here: http://link.springer.com/article/10.1007/s10753-012-9459-0


    iherb.com N-AcetylGlucosamine
    http://www.iherb.com/search?kw=N-Acetyl Glucosamine#p=1

    Last edited: Mar 8, 2015
  11. Soul*

    Soul* Well-Known Member

    Oh my gosh this is all so WAY over my head, I really can't process all these technical terms and detailed explanations but I very much appreciate all your replies. Will have to feel a bit better to take it all in and process but will definitely look into it more.

    I have Epstein Bar show up in my results and have had ME since '97 I never really had much flu or colds during ME and my temperature has always been very low so I never really had fever either. Only since a few years my temperature has come up to a more normal level.

    The things I picked up out of this so far is that I could give Reishi mushrooms a try or something that has a similar effect to raise the th2 to bring more balance? I'm not so eager on shrooms so will look into if there are other foods that have the same result and else will have to look into side effects and such first too. I don't want to take chemical meds if at all I can prevent it.

    Or I could give Chinese skullcap or Baicalin a try... will have to look into that too.

    Still reading through all the info and will edit this post later on to try and recap it in my own words to see if I understood correctly so far.

    I hope you can help me understand this all in more simple words. The flu experiences tells me that the body IS able to manage things better so I simply want to find out what I can try out to get that same effect and in what amounts and ways I should try it out. Important in this is that it is non chemical fit for a vegan diet and doesn't have additives. I'm intolerant to sugar, yeast, sweeteners, lactose etc so a pure natural plant based product would be most preferable.
    Last edited: Mar 9, 2015
  12. IanH

    IanH Active Member

    Several people here have been taking acetyl-glucosamine for at least two years (myself included). Poor reports of benefit for ME but better response with ME+FM.

    Glucosamine-sulphate has been shown to increase NKcell activity.


    It is also used to raise Tcells in transplant patients part of the response here is a decrease in the serum levels of inflammatory cytokines TNF-α and IFN-γ possibly independent of the effects on Tregs. However needless to say that glucosamine, in whatever form is immune modulating.
    Last edited: Mar 9, 2015
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  13. IanH

    IanH Active Member

    You say "Only since a few years my temperature has come up to a more normal level."

    What do you think is the reason for this change? Also has your Blood Pressure changed? Do you still get POTS the same as you did earlier? How has your PEM changed in that time?
  14. Soul*

    Soul* Well-Known Member

    Ian I don't understand much of the things you are trying to explain. English is not my first language and I'm not very familiar with all the medical terms either. Being glucose intolerant I don't know if that is any way connected to glucosamine but it doesn't sound like something I would benefit of... I have only ME not FM.

    I'm guessing the temperature change might have to do with hormonal changes due to age or simple long term living at a more appropriate activity level but I'm not sure. As a child before I got ill I always had poor blood circulation too and would often have ice cold feet and hands and would not be able to dress myself against cold weather and would cry from pain in hands and feet and ears and nose if having to stand outside to long before school. Later on when in high school I regularly would have to get of my bike half way and lay down to not pass out in freeze cold weather. I would hardly ever get ill as a child, though did get the common child diseases and have fever too. As a teenager I developed migraines that only way way later in adult age where found to be linked to food intolerances and hormonal changes. As far as I know I haven't had any problems with Blood pressure. POTS or PEM haven't changed as far as I am aware of. In the beginning years I did have a lot of pain 24/7 but that has changed drastically and I usually am not in pain anymore, I assume mostly because of change in diet and avoiding the things I am intolerant to in chemicals and such, as well, and much better pacing and more realistic activity level. When I overdo I will be in pain and great discomfort for long periods again.

    I found the Reishi shroom powder online in a Dutch shop so ordered that. I didn't find the Chinese skullcap or Baicalin in Dutch internet stores yet so am first gonna see what the Reishi will do for me.
  15. ljimbo42

    ljimbo42 Active Member

    @Soul* - Reishi is a great herb for the immune system. I have been taking it now for about 4 months and it is helping me a lot.

    A word of caution though- start at a very low dose and slowly work your way up to higher doses. As the reishi brings up your immune system you will most likely experience die-off from viruses and bacteria being killed off.

    I adjust my dose according to the die-off symptoms I experience. I would suggest starting at about 100-150mg a day for at least 4-5 days to see how your body responds to it. 150mg is about 1/16 teaspoon of powder. Good luck and let us know how it goes. Jim
  16. Soul*

    Soul* Well-Known Member

    Thanks Jim that's helpful information on the dosage. I got a 250 grams jar that should arrive today or tomorrow so that should get me a long way.
    How do you take it in, do you mix it up with anything?
    Do you take it in before after or during meals and in the morning or evening?

    What are the die-off symptoms you experience?
    And what is the improvement you experience?

    4 months is quite a short time still so that sounds very hopeful to experience benefit that soon.

    Some of the suggestions on Dutch sites are quite different.
    * 1-2 teaspoons a day on empty stomach with some water... They also recommend to combine with Vitamin C.
    * 3 g in 250 ml fluid 30 minutes before a meal
    * 1 - 2x daily 750 mg in water, juice smoothie or healthdrink.
    * Traditional practitioners recommend 0.5 to 1 g daily, 2 to 5 g daily for chronic illness, and up to 15 g extract daily for serious illness. The Chinese pharmacopoeia recommends 6 to 12 g extract daily. Doses up to 5.4 g daily (equivalent to 81 g of the fruiting body) for 12 weeks have been used in clinical trials.

    Looking forward to something happening and yes I do understand it may make me feel uncomfortable at first to. Will update here how it is going. Fingers crossed it will do something for me, so far supplements etc haven't shown any noticable result for me.
    Last edited: Mar 11, 2015
  17. ljimbo42

    ljimbo42 Active Member

    @Soul* - I have worked my way up to 2,400mg a day of reishi and 1,200mg a day of astragalus. Astragalus is another good immune system tonic. I take the reishi with or without food, I have not noticed any difference either way. As far as dosage goes, I would find what's right for your body.

    That could be 1 gram a day or it could be 10 grams a day and probably will change over time as your body adapts to your immune system strengthening. The die-off I experienced was a worsening of my flu-like symptoms and mild loose stool, but I started out at a fairly high dose.

    I think it was about one to one and a half grams. I also noticed when I first started taking it and when I increase the dosage, I get very energized, so you might experience that as well. Unfortunately the energized feeling fades after a few days. The improvements I have noticed are a small increase in energy, better clarity of mind and just a better feeling of well being.

    I am still at a fairly low dose though considering I am treating cfs. I just drop the powder on my tongue and wash it down with a sugar free drink to help mask the taste. I agree that 4 months is a fairly short period of time for me to see big results.

    I think I could expect much better result if I was taking 5-10 grams a day. Die-off symptoms keep me from going up on the dosage as fast as I would like.
    : ) Jim
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  18. RadioFM

    RadioFM Active Member

    Fibromyalgia Warning: Astragalus has antimicrobial and antioxidant benefits as well as immune-stimulating properties to consider. We want to modulated the immune system not over stimulate it.

    Note: Astragalus may not be recommended for people with a history of autoimmune disease.
    Last edited: Mar 11, 2015
  19. ljimbo42

    ljimbo42 Active Member

  20. RadioFM

    RadioFM Active Member

    You may be right my friend...

    Astragalus, Intestinal Inflammation and Endotoxin

    "A new study has reported that Astragalus may prove an effective therapy against intestinal inflammation caused by LPS endotoxin. The study demonstrated that Tnf-a and Il-8 is significantly higher in LPS-induced damage in intestinal epithelial cells."

    "Treatment with Astragalus mongholicus polysaccharide (APS) significantly abrogated LPS-endotoxin expression of Tnf-a and Il-8 and suggested this is achieved by blocking the P38Mapk pathway."

    See more here: http://heirsresearch.blogspot.com/2009/09/astragalus-intestinal-inflammation-and.html

    P38Mapk pathway?

    "P38 mitogen-activated protein kinases are a class of mitogen-activated protein kinases that are responsive to stress stimuli, such as cytokines, ultraviolet irradiation, heat shock, and osmotic shock, and are involved in cell differentiation, apoptosis and autophagy."

    See more here:http://en.wikipedia.org/wiki/P38_mitogen-activated_protein_kinases

    "p38 was once believed to be a perfect target for anti-inflammatory drugs. Yet the failure of more than a dozen chemically different compounds in the clinical phase suggests that p38 kinases might be poor therapeutic targets in autoimmune diseases. Many of these compounds were found to be hepatotoxic to various degree and tolerance to the anti-inflammatory effect developed within weeks.[44]"

    See more here:http://en.wikipedia.org/wiki/Mitogen-activated_protein_kinase
    Last edited: Mar 23, 2015
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  21. ljimbo42

    ljimbo42 Active Member

    Thanks Radio-Good info!
  22. Soul*

    Soul* Well-Known Member

    The Reishi powder was delivered yesterday and looking at the overal recommendations I think I will start with 0.5 grams and will take it along with the B12 and D3 that I take twice a week that also has the vit. C in it for today and will keep at this dose for a few days to see how that goes.

    I'm facing a more difficult few days as is so if it makes it worse now will be the right time and if it will make me feel better now will be the right time too :D

    The 0,5 grams was more then I expected it to be, but I don't mind the taste at all. Expected it to be more bitter but this will easily mix with anything, now I just took it as is with a bit of water afterwards.

    And for easy measuring I mixed it in with some home made chocolate replacers. What a nice way to take a supplement :) Will have to wait till tomorrow but the ones with just walnut (and carobe, stevia and coconutoil) taste real nice at least. The square ones are the ones with 0.5 grams Reishi powder in them. Now I don't have to try and weigh the right amount each morning.

    Last edited: Mar 14, 2015
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