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California 2014: IACFS/ME Day One: Translating Science into Clinical Care: 20 March 2014
The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to...
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My recovery story

Discussion in 'General Treatment' started by Ian, Dec 23, 2010.

  1. Michael Dessin

    Michael Dessin Senior Member

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    Good stuff Justy/Wayne,others..

    I hate going back and forth on this issue, because any suffering, no matter the condition is a terrible thing for any person.

    The answer to our debate/conversation may never come to be with our medical community.

    Just as Parkinsons, ALS and on, you can have the Atypical disease, the pure genetic form of the disease...its no different with ME..their is Atypical ME, and other conditions that mirror ME, that can still be labeled ME..just as in other diseases.

    When you have the Atypical form of these diseases, as myself and others here, because gentics play such a huge factor..a cure is nearly impossible unfortunately. When you have the secondary type of illness that mirror the Atypical forms, full recovery is much more likely..I've seen the differences plenty of times at the clinc I go to.

    Ian, thanks for your lectures, I agree with some of what you say and disagree on others, regardless all old news for me brother.

    I beleive you have to be genetically predisposed to getting this disease. In saying that...Theoritcally either toxin or virus can trigger genetic expression which in theory could lead to ME if genetically predisposed, being caused by...chemical/vaccination, virus...and maybe trauma...not just virus...so maybe their are multiple triggers...but genetic predispostion is a must.

    In saying that, generally I see those with the truest form of ME, initiated by a viral trigger, but cant rule out the other triggers...actually been racking my brain about this topic for years(triggers)....the whole thing is just so freaking complex its baffeling.
  2. Wayne

    Wayne Senior Member

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    Methylation Affects Epigenome and Gene Expression and ME/CFS

    Hi All,

    Since this feels a lot more like a friendly discussion than some sort of debate, I'll mention a few more things, as I've also racked my brain for years trying to get some kind of handle on this all. Mike, regarding some of what you're saying above, I've had similar thoughts. Using different words, I long thought I and many here had "core" ME/CFS, and others probably didn't. "Core" to me meant genetics in combination with other factors.

    These other factors included various "things" that could disrupt many body systems, but especially the immune, endocrine and methylation cycle systems. The failing or faltering of these systems (in whatever order), combined with or as a result of our genetics, is what I felt created (or began to create) the "core" neuroimmune disease called ME/CFS. But now I'm feeling I need to "tweak" some of my perspectives.

    Just recently, I reviewed some information on epigenetics I had run across about three years ago. I started a thread about it entitled "Does Methylation Affect Epigenome and Gene Expression?" Between the information I posted, and the reply by Richvank, I feel I'm gaining whole new perspectives, which in turn is influencing how I view ME/CFS. In short, whereas I had always thought genetics (genome) was a key factor (and still do), I had never understood how our epigenetics expresses our gene expression.

    Genetics to me feels like a pretty "hard-wired" thing, whereas our epigenetics appears to be much more malleable and can be affected by numerous things. These things could include traumatic events that can knock it out of kilter, but also various healing modalities than can bring it back into balance.

    So what if ME/CFS (and other diseases) turn out to be more a reflection of our more sensitive epigenome, rather than our genome? And if so, does that make ME/CFS (and many other diseases) more readily able to be effectively treated than if they were influenced primarily by our genome?

    OK, I think I've racked my brain enough for the moment. Thanks Ric for your thoughts and detailed analysis. I have to agree with most, if not all of it. Thanks everybody for your responses. For some reason, I'm up for a little intellectual stimulation at this time; couldn't always say that in the past. :Retro smile:

    Best, Wayne

    ETA Just recently I began to use some "earthing" products to help protect myself from noxious EMFs and other kinds of radiation. Given the improvements I'm noticing, I can't help but think that those who are as electro-sensitive as I am are likely having our epigenome affected by EMFs, etc.
  3. roma

    roma

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    XMRV or any other retrovirus will pan out whether some people like it or not, a true ME case can only be caused by a virus, there may be people here that don't actually have a virus but still have a CFS diagnosed those are lucky because they really don't know what true ME feels like..

    this is a small description how a retrovirus behaves in a human body, to begin with, 60% of all lymphocytes are in the gut, a retrovirus will infect lymphocytes and dying cells make the linning of the gut get thiner and a bunch of inflammation happens this explains IBS in ME.

    Retroviruses infect NK cells, that's why ME patients have lower NK function.

    Retroviruses pass the BBB and therefore infect the brain, when there's an infection in your brain, your body sends cytokines to the brain to fight the infection, since you can't flush the virus out of the brain it becomes an autoimmune condition resulting in brain demyelination and/or lesions, a virus in your brain may affect any other function in your body depending in what part of the brain gets infected.

    A virus in your brain also explains the inflammation/brain fog/ and the problems and pain in the spinal cord.

    Having an enlarged spleen means that either you have bacteria or virus in you blood that your spleen is trying to clean, having an enlarged spleen also gives you a swollen tongue explaining wierd shaped tongues.

    Yeast infections can happen to anyone but ME patients deal with yeast infections for months, a virus that is infecting your NK cells and therefore makes you have a compromised immnune system makes you not have enough good bacteria and that's why you can't control yeast infections.

    many viruses active at the same time are most likely to be the result of having a compromised immune system, same exact thing happens to HIV+ people that's why they get OIs which are very common with ME as well but not as severe.

    there are many other things that can be explained with a retrovirus model, XMRV has shown to infect liver,spleen,brain,gut,testis,pancreas,prostate, lungs, most likely heart too, just take a look at this ME/CFS memorial but really read it all and you will see most ME/CFS patients have died of a weird tumor, cancer(which is common with retroviruses) or failure to any of these organs aboved mentioned , please take a hard loo at the memorial and there are other out there in other sites that are almosy identical..

    http://www.ncf-net.org/memorial.htm
  4. Hip

    Hip Senior Member

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    What is interesting about this bone infection (osteomyelitis) precipitation of CFS symptoms is that apparently the most common bacterium causing osteomyelitis is staphylococcus aureus, with severe bone infections often due to methicillin resistant Staphylococcus aureus (MRSA) strains.

    Staphylococcus aureus is quite strongly linked to CFS symptoms, in that treatment of CFS patients with Staphylococcus toxoid vaccine (a vaccine which boosts the immune response against Staphylococcus aureus) often brings significant improvements in CFS symptoms.

    So although bone infection is perhaps an unusual cause of CFS, the presumed Staphylococcus aureus mechanism by which this bone infection created Ian's CFS symptoms may be the same mechanism at play in "regular" CFS patients.

    In regular CFS patients, overpopulation of Staphylococcus aureus in the gut/urinary tract/kidneys may give rise to a lot of a CFS patient's symptoms. Of course, the reason that a CFS patient has an overpopulation of Staphylococcus aureus in their body in the first place may be down to having one or more immunosuppressive viruses like XMRV, HHV-6A, cytomegalovirus, enterovirus, etc.

    Nevertheless, a story like Ian's is something that we should ponder upon and learn by.

    Could it be, for example, that regular CFS patients, due to their immunosuppression, have a low-level Staphylococcus infection throughout their entire skeleton? This would be a hidden source of Staphylococcus, leaching out its toxins from our bones. Dr Dr Meirleir may be interested in this possibility. Or more straightforwardly, the Staphylococcus populations in our gut, urinary tract or kidneys is enough to contribute to our symptoms.
  5. Mij

    Mij Senior Member

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  6. Hip

    Hip Senior Member

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    Very true. Furthermore, rather than this fact adding confusion to the origins and causes of CFS/ME, inspiration and insight should be drawn from these diverse and varied chemical/viral/bacterial/fungal/protozoal causes of CFS/ME.

    For example, what do organophosphate pesticides and enteroviruses have in common?

    Answer: they both have a tendency to damage the brain area called the basal ganglia (an area strongly implicated in CFS/ME in general).

    Examining the commonalities of these diverse causes of CFS/ME can actually help us cross-reference and pinpoint where the malfunctions in the body lie in CFS/ME.

    Having said that, though, the cure (if there is one) for these various chemical/infectious categories of CFS/ME may be different in each case.
  7. rlc

    rlc Senior Member

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    Hi Justy, yes there is a specific rare disease called Myalgic encephalomyelitis, but this has absolutely nothing do with CFS as defined in any of the CFS/ME diagnostic criteria, it is a disease that has symptoms such as Paresis (partial loss of movement)And paralysis and it is easy to prove if someone has it by doing a SPECT brain scan, if the patent fails this, and all other conditions that could cause this brain damage have been ruled then the patient has Myalgic encephalomyelitis, if anyone with a diagnosis of ME, CFS, CFIDS doesnt fail this test their misdiagnosed.

    If you read this article about a lot of the early epidemics you find that in most of them the symptoms include Paresis, paralysis, sometimes vomiting and diarrhoea, and that most people returned to work, these are obviously not outbreaks of CFS link here http://www.meresearch.org.uk/information/keypubs/Acheson_AmJMed.pdf any Doctor who tries to say that theses outbreaks prove the existence of CFS as a specific disease is either a bit dim, or is deliberately twisting the information to suite their own agenda.

    In these outbreaks they have been able to prove that there was a very short time between exposure and start of illness, often about four days, which proves that they cant have been caused by a retro virus, because retro viruses take a long time from first infection to start of symptoms often months, even years. They are most likely caused by some other form of fast acting virus or bacteria or in some cases maybe toxic exposure, The symptoms and presentation of these outbreaks are often different which raises the strong possibility of multiple causes.

    Unfortunately Myalgic encephalomyelitis and CFS have for some bizarre reason been linked together and people think there the same thing which there not, (bizarre because they have different symptoms, and you can do tests that prove people have Myalgic encephalomyelitis) A lot of information on this can be found here http://www.hfme.org/ including http://www.hfme.org/meandmisdiagnosis.htm and http://www.hfme.org/wheretoaftermisdiagnosis.htm

    Interestingly DR Byron Hyde who is an expert in Myalgic encephalomyelitis gives any patient with a CFS diagnosis an entire day and a half for their first appointment. He says that when he first started examining patients diagnosed with CFS he was only able to find the true cause of their illness about 20% of the time, now because of extensively training himself in how to look for other conditions that may cause CFS symptoms he finds the real diseases causing the symptoms in CFS diagnosed patient over 80% of the time, and blames the failure to find the rest on his own limitations as a physician. Here is a fascinating interview with him http://grubstreet.ca/articles/interviews/byronmhyde.htm

    All the best Justy!
  8. Michael Dessin

    Michael Dessin Senior Member

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    I agree with Wayne, Hip and alot in these posts...I was extremely close to being on that memorial list...I've felt the worst of what this disease can throw at a human being but luckily survived. Coming from the point I was at, I feel truly blessed to even be able to have this conversation.

    Regardless of cause, trigger.e.t.c. I hope no one has to suffer, this disease is horrific, especially at its worst.

    I have found, through trial and error, this disease is possible to keep in check, to a point at least...and I pray everyone with this disease finds that pathway to keeping as well as possible :)
  9. rlc

    rlc Senior Member

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    Hi Roma The information that is being spread about NK cells in CFS is False there are numerous causes of it and a lot of the conditions that causes it are the ones that are commonly misdiagnosed as CFS, here are some links to this information

    Celiac http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1954856/

    B12 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1905232/

    Hemochromatosis http://www.ncbi.nlm.nih.gov/pubmed/11045759?dopt=Abstract

    Adrenal insufficiency http://onlinelibrary.wiley.com/doi/10.1002/eji.200526128/abstract

    Thyroid Diseases http://www.ncbi.nlm.nih.gov/pubmed/1581468

    Sleep Apnea http://ajrccm.atsjournals.org/cgi/reprint/168/2/242.pdf

    Sleep disturbances http://www.psychosomaticmedicine.org/cgi/reprint/56/6/493.pdf

    Auto immune disease Lupus, Rheumatoid Arthritis, Sjogrens, MS etc http://www.ncbi.nlm.nih.gov/pubmed/11352245 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1538133/pdf/clinexpimmunol00198-0115.pdf

    Depression http://www.europeanneuropsychopharmacology.com/article/0924-977X(95)00040-V/abstract

    Without high enough Vitamin D levels the immune system is incapable of working link http://www.sciencedaily.com/releases/2010/03/100307215534.htm

    There are a lot of so called CFS doctors in the world spreading easily provable false information about things like NK cells and CFS and making a lot of money out of people, and I have a very suspicious opinion of a lot of them. If I can find this information in under an hour just by goggling Nk cell and the name of diseases, what are they doing?

    In your case, from memory you have a MRI results that shows demyelination and are going through an awful time, my condolences! Maybe you do have true ME, the only advice I can give you is to do what you can to make sure that the Doctors havent stuffed up and either not tested for something, misread a test and that there hasnt been a lab error which happens a lot especially with tests for viruses. In my case the test that proved what I have, was done over a decade ago, but because of a lack of knowledge from the doctor who did it, it was ignored!

    All the best I hope things work out for you soon and your condition improves!!!
  10. dannybex

    dannybex Senior Member

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    I'm late to the party as usual, but are you actually claiming that mercury is 'not harmful'? Please, please show us 'the evidence'.

    With all due respect, there might be a chance that even though you had your amalgams removed, you still may have a high body burden of mercury or other heavy metals due to impaired liver detoxification pathways...
  11. Renfred

    Renfred

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    Hey dear, thanks for sharing your recovery story and I am very glad to know that you are safe and sound now and healthy. I understand your pain and the joy after your recover, Keep smiling forever and led a healthy life..........
  12. Tia

    Tia Senior Member

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    So THAT'S what was behind your sickness? I always wondered about how you got well but didn't have the nerve to ask since I expected to hear something I've already heard that doesn't work, like: "Oh I just decided to give my all" You know, the usual things.. But this,,this is something else... Hmm. Could one be born with this? Not possible, right? It's gotta come up after a root canal or an extraction?

    Interesting to, that your mom and sister has CFS to. Like it runs in the family. Points to xmrv u know.. But I'm SO happy for you, Ian! It must feel gret to be back in life? I wish u the best! :)
  13. Ian

    Ian Senior Member

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    Um,
    I am not sure the word gradual really applies. I had the operation done twice because it wasn't 100% successful first time around. But first time I had it, for 2 weeks nothing changed. Then after 2 weeks I had a massive change in my health. I went from being ill all the time to having good days or weeks, then would fall back to being sick. Then would get well again, and it continued like that until the down days became less and less and eventually disappeared. But because the bone didn't fully heal around 6 months later the problem started to come back, and I became sicker and sicker, until the point I was just as ill as before. The problem had more than halved in size, and was confined to just 1 location but I was extremely ill with it.

    The second time I had the operation I was just sort of expecting to turn up, have it done and then leave again and go back to do what I had been doing. But it hit me really hard. I think I was totally wiped out for nearly a week after it. It was as if Armageddon had been unleashed on my body. I wasn't expecting that all. The recovery the second time was perhaps slower than the first time, but was very similar. Up and down, then the down periods became less frequent.

    I still have some left over problems today. When I was at my worst, at one point my underarms started to swell up, and the skin would peal off, something like every 2-3 days. I was also getting chronic pain in my neck and sore throats. I still get tonsil problems today, get mild tonsillitis perhaps too frequently, and I don't feel specially great with it, my left tonsil especially, my right seems mostly unaffected.

    I know if I ever had any kind of infection like that again I would go straight back to being chronically ill, say if I had a root canal or something. That would be it for me.
  14. Michael Dessin

    Michael Dessin Senior Member

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    Ian, take a good look at all of what Justy has said throughout this thread...Those are the facts about ME..again happy for your recovery but do not confuse your condition with the disease ME..CFS is a bullshit diagnosis for many conditions, unfortunatley ME gets lumped into that category, which is a horrible injustice for many true ME patients. Look at the definition of ME by the WHO and see if you truly think you can say you have ME, which I'm pretty confident the answer will be no.

    Mike
  15. Michael Dessin

    Michael Dessin Senior Member

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    Not true, everyone with ME have mercury issues..heel spurs and dental issues are not links to this illness either
  16. Mij

    Mij Senior Member

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    I disagree.

    Mij
  17. Mya Symons

    Mya Symons Mya Symons

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    I have three sinus cavities and always have a lot of gunk leaking down my throat. I had an MRI done once on that area and the third sinus cavity extended all the way to my cranium. Sometimes I wonder if a chronic sinus infection isn't my problem. However, the surgery to repair it includes going up through my lip and cracking my skull open. No thank you.

    Pretty scarey. It makes you think that there might be a few of us who were misdiagnosed because either the doctor did not know what he or she was doing, or did not care to take the time to look for the answer. I remember when I was first diagnosed. All the information I found an FMS and CFS talked about how it was do to post-traumatic stress or the inability to handle stress or depression. I was so exhausted, in so much pain and constantly had the flu. I thought for sure the doctor had misdiagnosed me and I was really dying of cancer. I wonder how many people this has actually happened to?
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    How about if you have done detox and no longer have high mercury levels, and no longer have silver amalgams.. Are you saying that a person with such the scenario still has mercury issues?

    GG
  19. jeffrez

    jeffrez Senior Member

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    Mercury has a half life of over 17 years in the CNS. So it's a good bet that once poisoned, most people never actually get all of it out.
  20. Michael Dessin

    Michael Dessin Senior Member

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    I think both the last statements about mercury are valid.

    Detox and removing fillings are a great way to reduce the load, generally two years of detox is needed and you should feel much better.

    However there is deeply stored Hg as Mr Kite mentioned which is hard to get out. In general though, if you can reduce the load to various extents than you can feel better, depends on each persons body burden. Mercury is problematic for nearly all long term ME patients, regardless if you think so or not.

    Not saying its the sole reason behind ME by any means but can increase severity of the illness dramatically.

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