Fibro is NOT a disease

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by jaminhealth, Oct 20, 2012.

  1. IanH

    IanH Active Member

    It is the methionine synthase catalyzed reaction that is "theoretically" blocked. Looking beyond that the possible problem arises from the interaction between methylcobalamine and nitric oxide. The syndromes, ME/CFS, FM and MCS all have disturbed nitric oxide metabolism (see work of Martin Pall).

    Methionine synthase uses methylcobalamine as a co-factor and if methylcobalamine it unavailable due to nitric oxide excess then methionine synthase will be inhibited rather than blocked. However, this is such an important cycle in the synthesis of reduced glutathione such inhibition would be damaging.

    Such inhibition of enzymes (such as methionine synthase) can sometimes be partly overcome by adding more substrate or more co-factors. Which is what this list of precursors does.

    This is why the route to increasing glutathione should be many. While many of the processes are unknown, studies have shown that the items of the above list independently increase levels of glutathione. Whether they all or any work to "unblock" the methylation step by methionine synthase is unknown but theoretically should be reducing the inhibition by nitric oxide.

    Perhaps one of the peptides you are taking is glutathione it is used intravenously for Parkinsons.
    [This Message was Edited on 10/29/2012]
  2. Mikie

    Mikie Moderator

    Thanks, once again, for your input. My doc travels all over to attend workshops done by Oxford University regarding this treatment. There are different synthesized peptide sequences for different conditions. The one I take is a "broad spectrum" serum for immune and autoimmune illnesses. There are others for cancer and for RA. I'm sure there are some I'm unaware of too. My doc says it's mind blowing what they are researching. They are trying to formulate sera for Parkinson's, Alzheimer's and autism. One pharmaceutical co. is doing studies on Lyme. It appears that this type of treatment is looking very good for all kinds of conditions.

    It has been used in Europe for more than 30 years and the one I am getting has a better-than-90 percent success rate. I first thought this was snake oil but was convinced when I learned this and was impressed that it originated at Oxford. I have had some success with the simplified methylation protocol as well.

    Thanks again.

    Love, Mikie
  3. sunflowergirl

    sunflowergirl Active Member

    I take l,000 mcg sublingual several times a day so how many would I need for it to come up to the mg that was recommended. I had a couple B12 shots years ago at the rheumy.....she told me that a shot didn't even compare to what we could take so I'm confused.

    I've also been reading a book, "Could it be B12? An epidemic of misdiagnoses. She talks about how low B12 can bring on dementia/alzheimers, falling or lack of cordination which brings it on, dizziness, numbness in extremities, and lots more. Apparently B12 is something that most doctors don't even bother to check. Also that the urine MMA test for it gives a much more accurate reading.
  4. IanH

    IanH Active Member

    I am still not sure why a peptide preparation is being used for ME. I am also concerned that a proprietary preparation does not reveal what is being taken. If they wanted to protect it, it would have a patent. Peptide preparations are used for various cancers (have been since late 80's) but it is always known which peptides are being used and the mechanism of action. if an anti-cancer antigenic peptide prep is being used "off-label" you should be told.

    What explanation does your doctor give for the treatment?
  5. IanH

    IanH Active Member

    1,000mcg is 1mg, so you are taking 1mg several times daily. Overdosing is not a problem. B12 is a vitamin but in fact most of it is made by bacteria in your gut. As we age the amount being made reduces. The B12 in our diet is bound in the stomach to "intrinsic factor" a protein which successfully carries the B12 to the lower gut. As we age we produce less intrinsic factor. Most people after the age of 60 should have their B12 checked. Unfortunately if a patient is not complaining of reduced energy it gets missed. However energy drop is only one symptom of B12 deficiency. My position is, if over 60 just take it. One thing to note though is that B12 initially can give a boost to energy but that wains after a few months - this is not a reason to stop taking it. Its role in reducing oxidative stress and raising glutathione is indisputable.
  6. Mikie

    Mikie Moderator

    Oxford controls what can be divulged to patients or anyone else. They, and their research partners, do not want big pharma getting ahold of the exact peptide sequences for profit. It is just a matter of time before big pharma figures it out for themselves but from what I understand, it's not easy to find just the right sequences of peptides, and the length of the chains, which work in different conditions. Please excuse me if I'm not explaining this well but being a layperson has its limitations.

    I am not getting peptides for cancer. That's a whole other formula. Many docs feel that CFIDS/ME is an immune illness so that it falls under the immune/autoimmune conditions for which my serum is used. As you know, I also have FMS and Sjogren's.

    At the seminar I first attended, the docs showed a video indicating how the peptides bond to cells. It, and all the other info, is very basic. It is probably all most of us nonprofessionals are capable of comprehending. With the exception of some exhaustion, my symptoms are gone. Even the exhaustion is improving so I think the cause is something other than the CFIDS/ME.

    I don't need to understand this treatment at the level of a scientist. I do know that, for me, it has worked. What I would like is for my doc to connect the dots for me between several facets of illness and this treatment.

    Once big pharma produces their own sera, the patient info will undoubtedly contain all the info on the peptides. When I look up info on drugs online, the chemistry is always there for the pros.

    I wish I could provide more info but I just don't have it and can't get it. That hasn't stopped me from benefiting from the treatment, though. I also don't understand how transfer factors work either but I do know they work. How the manufacturers obtain the "information to infect" from pathogens is proprietary too.

    Love, Mikie

  7. IanH

    IanH Active Member

    I'll wait and see how it all goes. All the best.
  8. Mikie

    Mikie Moderator

    I'll try to get some more general info from my doc on the 9th. He is excited about this treatment and likes to talk about it as much as he can. I have had a sore throat so am trying everything to keep from getting something so I don't have to cancel my appt. If one is sick, the injections will not work. I once had to cancel for two weeks when I got a cold. I used to never get run-of-the-mill viruses but now that my immune system is more "normal" I seem to be vulnerable to them. There is a downside to a normal immune system :)

    Love, Mikie
  9. Spacey

    Spacey Member

    What is a disease, if not a compileation of different symptoms. disease or dis-ease. One day they will find out more about it and how to treat it. Untill then call it what you want!
  10. jaminhealth

    jaminhealth Well-Known Member

    I'm now taking N-acytle cysteine 600mg each morning on empty stomach....just started.... I take all the other supps to increase glutathione I shall see if this does anything....

    Acupuncture is helping lower back spinal stenosis, but this is a long road on this treatment but I'll stick with it as long as I can afford it.....

    Just heard about a topical ointment called Octogen and looking at it, it's been around for a long time and I believe was a script but now available
  11. IanH

    IanH Active Member

    As in the case of many psychological disorders, such as phobias.
  12. whoopingcrane

    whoopingcrane New Member

    For 20 years I was told my pain and flu-like symptoms as well as many other symptoms were FM and CFIDS. When I was finally tested for Lyme Disease with a newer and better test than the Elisa which almost no one tests positive to, I found the causes of my health disaster. Getting treated for long term chronic Lyme is very difficult, expensive and finding a Lyme literate dr. is hard because there are not that many throughout the country. But many people do get better with treatment, though not cured.

    Chronic Lyme Disease is not just Lyme disease, it is made up of other tick borne infections, other bacterial infections, viruses, parasites, fungus, molds, etc. Anything in nature can be carried by ticks and other vectors.

    There are some researchers who believe that tick borne illness is the cause of 75% of all diseases that exist.

    I don't think you can ever get rid of the symptoms until you treat the underlying cause or causes

    I do not think that FM is a separate entity for most people (maybe it is for those who have been injured) but for the majority of fm and cfids patients there is always Lyme infection as the root cause. Every Lyme literate physician I have seen (I have seen about 4) has told me that every patient who has come to see him or her with an fm or cfids diagnosis when tested and evaluated properly has Lyme and other tick born infections as the cause. Lyme does different things in different people depending on which infections you get and how much infection you get. It also is affected by your own genetics.

    It is a horror that the medical profession is sweeping under the rug because insurance companies DO NOT WANT TO PAY FOR TREATMENT. That is just my take on the situation
  13. IanH

    IanH Active Member

    I have FM and ME (15+years) When first treated by a Rheumatologist, he had this idea and tested me thoroughly and even though the tests were negative he treated me with antibiotics for mycoplasma infection. Since we do not have Lyme disease in NZ where we live (NO TICKS, aside from mosquitoes, virtually no biting parasites) I doubt very much my FM/ME is related to any such infection.

    However I do agree that Fm can be a symptom set of Lyme disease and of mycoplasma infection in general. So did my father who was an infectious disease specialist (deceased now). However Fm can be a symptom set of many illnesses.
  14. Mikie

    Mikie Moderator

    On Lyme and peptide injections. They have found the genetic defect(s?) which causes a person's immune system to produce a chronic inflammatory reaction to Lyme. It is a chronic inflammatory reaction in many of our illnesses which makes us sick. I still believe it is genetic in nature.

    I do not believe Lyme is at the center of all our illnesses but I do believe that many cases of Lyme are misdiagnosed.

    No one, at this time, knows what causes CFIDS/ME nor whether it's one illness or many or whether it's one illness with many subsets. There are a number of illnesses with similar symptoms and this can confuse the issue. A mycoplasma infection triggered my CFIDS/ME full blown but it was not THE CAUSE of my illness. It's easy to confuse a relationship and causality but they are not the same.

    Love, Mikie
  15. kjfms

    kjfms Member

    The CDC now refers to Fibromyalgia as a disorder so I think for the good of patients who actually have this disorder it's time we move past this... "I don't think it's a disease" nonsense. Because is has been proven to be one. The American Rheumotology Board has critia for a diagnosis of fibromyalgia. I am sorry Jam but it people like you how give a bad name to people who actuall have fibromyalgai... I have it - I am not ashamed of it. I meet all of the critria and frankly I am so tired of people who are no medical professional saying that it's nothing. Maybe you Dr. Darrow should speak with someone at the CDC. Not being rude - just honest.

    And your right, since you have thyroid issues, adrenal issues, hormones (what hormones? there are dozens in the human body) According to the critria of the Rheumotology Board you do not have Fibomyalgia - there after all of these years you are finall prover right :) Here is the link:

    ?The patient does not have a disorder that would otherwise explain the pain. Full criteria [PDF - 130KB] .
  16. jaminhealth

    jaminhealth Well-Known Member

    and works with his patients on hormones and nutrition and specializes in Prolotherapy.

    For me, I prefer to NOT telling my body I have a disease, to me disorder or syndrome is a lot less harsh. I call it FM stuff....the body is powerful and likes to hang on to labels we give it.

    And I've always said thyroid, adrenals etc. are all connected to the FM issues....
  17. kjfms

    kjfms Member

    Since there is new diagnosing criteria - it's quite obvious to me that I've never had fibromyalgia because I do have Hashomoto's thyroidist, osteoarthritis and I'm now being test for several other things that have pain as a symptom.

  18. jaminhealth

    jaminhealth Well-Known Member

    dx some time ago, HypoT and St. Amand gave me the FM my thinking I've dealt with all these and more. And have worked on addressing all them and more.

    I don't think there is a cut and dry criteria to the FM so many docs have said "it's a basket of a lot of things gone wrong"...... jam

    The hip replacement complications left me with nasty complications to my lower back, which caused knee issues which caused ankle/foot....OA issues... Not a smooth surgery for sure.
  19. IanH

    IanH Active Member

    This is how it should be done. Not giving a diagnosis of FM when there are so many underlying conditions which could be investigated and which will explain the symptoms.
  20. jaminhealth

    jaminhealth Well-Known Member

    left me with a bad taste in my mouth and mind, as he was so quick to say "you have FM"...after touching around my neck area, saying your thyroid is fine, then going to these so called "points".....I never trusted his dx....

    Thyroid was major as I finally found 3 yrs later when I got on Armour by my osteopath....geeeeeeeeezzzz, grrrrrrrrrrr