1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
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  1. aquariusgirl

    aquariusgirl Senior Member

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    Mike

    you mentioned you got lipid IVs. Can you tell us more about these? Are these the IVs pioneered by Patricia Kane and co?
    How many treatments did you have?

    Separately, you said your cobalt numbers are normal. I was wondering is this a serum B12 measurement or a urine MMA, or something else?

    Also, do you know what your CBS snps are?

    I'm curious as to why your case of CFS was so bad. Does your doc have any ideas?

    Rich said I had the worst results of any Vitamin Diagnostics panel he had seen . ...this was a while back.. and it makes me wonder if I have worse genetics than other folks.

    I certainly don't stand out on the yasko forum, so there must be other snps she hasn't figured out yet.

    I don't think my exposures were that bad.....

    I'm just wondering aloud what in your case made it so severe. Does yr doc have any clues?
  2. Michael Dessin

    Michael Dessin Senior Member

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    aquariusgirl

    Yes, in giving me lipids, this was similar to Kane's lipid exchange concepts. Really just detoxing and replacing with lipids. Lipids helping to replenish the nervous system membranes, tissues .e.t.c

    All B-12 measurements are normal.

    My case was severe, truth is... there are many many cases like mine though. for the most part, going unheard because these folks are usually in complete isolation as I was. Unable to read, write and virtually incapable of any communication.

    I think once the toxic and viral burden get to a certain point, your body becomes overwhelmed, and cannot carryout the basic functions that allow us to live. Barely putting out enough energy to sustain a heart beat, Pancreas only capable of the most minor digestion, nerve cells extremely weak and damaged, allowing for minimal communication throughout the body systems..e.t.c.

    Virtually getting to a point where your as close to death as can be... but still alive. It's horrific and I would not wish this on my worst enemy.

    So what made my case bad...most likely several exposures to mold, mercury, pesticides, creating an environment in which these virus thrive in. These exposures starting from.. being passed down through my mom... onto daily living throughout my life...Moldy house, pesticides on the soccer fields growing up, mercury fillings and so on.

    So I think a lot of it begins before we actually come down with ME/CFS, Kinda setting the stage to get this disease.

    I'll look up my SNP's in a bit, can't pull up the file right now for some reason.

    Hope this helps

    Mike
  3. aquariusgirl

    aquariusgirl Senior Member

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    lipids

    Hi Mike

    Thanks for your reply.

    I was asking about the lipids because I remember reading something jenbooks wrote about Kane's lipid IVs.

    She said (if memory serves) that there were problems in the early days with administering the lipid IVs .. that they coagulated in the blood or something ....but they were ok for you?

    Jenbooks, maybe you could comment on this.

    Having said this, if they could be safely given, I would like to try them.

    Otherwise, I just read your whole blog post thru & I looked at the test results you posted and it made me realise that while you might present a bit differently from me on the face of things.. actually we're both in the same boat.. lots of pathogens, no amino acids yatta, yatta, yatta.

    It really drove the point home that the biochemistry is the same from patient to patient so thanks so much for posting those results.

    Oh & I was really struck that the one doc let you have a treatment knowing you could have a really adverse reaction, and then when you did react badly, he just shrugged it off!!?! What about first do no harm?

    Was that the B12 IV you were referring to?

    I really winced when I read that part. I have had some hellacious days and weeks when I took too much glutathione and B12. Some seemingly innocuous substances can be really bad for us in the wrong dosage or at the wrong time.

    I'd love to see your genetics some time.. when you get a minute.

    No pressure!!

    Kudos for being so persistent in seeking out treatment & thanks for finding the time to keep up with posts here. Go Mike!
    Best
    L.
  4. jenbooks

    jenbooks Guest

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    Kane protocol:

    I'm trying to remember what I read. I've seen it done in my doc's office. You have to roll the blood with the phosphatidyl choline and you have to do that carefully as blood does clot outside the body. That was one of my concerns. You have to know exactly what you're doing as you aren't returning it through a filter. You are rolling it with the blood because it's too thick otherwise. I did read about some adverse reactions. I did hear about some good reactions too.

    Unless you're at death's door or in a wheelchair I'd suggest oral replacement. It's much slower of course. If you look at Ayurvedic medicine they understand lipid replacement and have various procedures for it. Come to think of it I'll go take my fish oil right now.
  5. Michael Dessin

    Michael Dessin Senior Member

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    Aqua

    Hey L

    I really think my doc had to pull all the tricks out of the bag to save my life. Some things he used on me, I don't think he does regularly with most patients, such as the lipids, which I got by IV.

    Each patient is a little different, so his approach does vary from patient to patient. Good example, he has never given me Glutathione or B-12, but gives it to some other patients.

    He just gives the body what it needs and what it can handle. He most likely felt that GSH and B-12 would not resolve issues, but rather, try and resolve the issues and the body will again start to process GSH and B-12.

    Just ordered a copy of my genetic profile from the lab, have it here somewhere but can't pull it up for some reason, email me in a few days, and I will send you a copy....:) I know the test results were BAD! As are most ME/CFS patients results.

    Kindest

    Mike
  6. jenbooks

    jenbooks Guest

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    Mike: Do You Think it was Luck or Destiny?

    Mike. Your story--how do you personally interpret it? I would really be interested in hearing.

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