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Just finished Cerebrospinal Fluid Study (Dr. Natelson)

Discussion in 'Active Clinical Studies' started by kms1990, Jan 24, 2012.

  1. richvank

    richvank Senior Member

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    Hi, cph13.

    I think they are going to use N-acetylcysteine in the new study. They want to see if this will raise the level of glutathione in the brain. They have found that it is low in ME/CFS patients, using magnetic resonance spectroscopy. I'll be interested to see how it comes out. As you may know, I prefer treating to lift the partial methylation cycle block as the way to raise glutathione on a permanent basis, and I have communicated this to them, but science has to proceed one step at a time, and that's too big of a jump right now. So, patience is called for.:)

    Best regards,

    Rich
     
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  2. cph13

    cph13 Senior Member

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    Hi Rich,
    Do U know if Dr. N is using the MP in his practice? (I do need neuro assessment also) SMP is where my head is at. I've put off starting the SMP because of my appt. in the hopes that he does/will.
    The Lord has made me patient. I purchased everything for the SMP than came down with a gum infection lasting 3 weeks now. I laid low because of taking abx. In the meantime I received Dr. N's newletter and decided to make an appt with both drs. I am v. patient at this point; 20 years and still cautious. Thanks Rich
     
  3. richvank

    richvank Senior Member

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    HI, cph13.

    As far as I know, Dr. N. is not using the methylation protocol. I've tried discussing the basis for it with him at conferences, but as far as I know, he has not been convinced. The Lord is making me patient, too!:)

    Best regards,

    Rich
     
  4. lnester7

    lnester7 Seven

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    This is where I think getting the people with theories together in a conference to listen to each other and have mini workshops where they can discuss and build on the models would be to the best interest of community.
     
  5. richvank

    richvank Senior Member

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    Hi, Inester7.

    Conferences are certainly helpful, and people do listen to each other to some degree. Ultimately, though, I think that the limits to making progress tend to come down to human nature and institutional barriers that often have to do with obtaining and maintaining funding and getting credit for discoveries. The system in which researchers work has inherent constraints that work against open cooperation and sharing of ideas. I think that's unfortunate, but we haven't figured out a better way to do it. Once something has been published, people are more free to talk about it. Until then, things are kept under wraps. This does slow progress, in my opinion, but I guess it also preserves the system, and that does tend to pay off in the long run. But you're right; if people could just sit down together to talk and be free to "let it all hang out," things could go much faster. It can be really maddening, for example, to go to a conference and listen to a talk in which the speaker wants to tell the audience that he has made an important discovery, but he can't say what it is, because his organization is applying for a patent! Why did the guy stand up to talk at all? I've witnessed this more than once.

    Best regards,

    Rich
     
  6. August59

    August59 Daughters High School Graduation

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    What ever happened with this study?? It wasn't published was it?
     
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  7. cph13

    cph13 Senior Member

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    Hi August...to the best of my knowledge the study is still ongoing. Dr. Natelson had some health issues and was out of commission for a month or so Oct/Nov part of Dec. I believe they are still accepting takers on the spinal tap. It seems he has the funds but doesn't have the patients. One must be clean....on nothing for the spinal tap for 2 weeks before the tap.
    As far as the NAC study, I believe that also is ongoing.
    There are some people here that participated in the s. tap. I haven't seen their results posted.
    Hope this helps.
    I've heard from another source that once again there are delays with Dr. Natelson. I know in late Dec. he cut his hours to 1 day a week. Hope this helps. I will LUK if I find anymore info. Be well ...
     
  8. searcher

    searcher

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    I'm sorry to hear that Dr Natelson hasn't been well. I was a participant in the spinal tap study a year ago, but we don't get to find out individual results on the glutathione/glutamate/etc. levels found in our tests. We just got to find out the standard test results that you would get if you had a MRI and spinal tap (i.e. I received confirmation that I didn't have MS or any other obvious issue in the tests.) I really wish we did get to find out our results, especially since it looks like it will still be awhile until the study is completed and published.
    As a side note, I recently started taking NAC and juicing and it seems to be helping more than the methylation protocols I have been on for 2 1/2 years. I realize I must have been missing a critical co-factor, but I was taking a good range of supplements and ate a Wahls-style diet, so I don't know what I was missing.
     
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  9. cph13

    cph13 Senior Member

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    Hi searcher, why don't u call his office. Diane Vu is now the research assistant. Perhaps she will share that with you. There are studies that DON'T release your personal results in detail (so I've been told) I don't know about this one as I HAVE NOT participated. I just went to him as a PP.

    Interesting about NAC. FANTASTIC that it works for U. Makes me wonder. Many here say it's something to perhaps avoid. I have NO experience and their are others on PR that use NAC successfully.
    I recently began the SMP and so far so good. FYI, to you and EVERYONE, Cornell is doing a study on NAC. In case U care...Diane Vu, RA in Dr. Natelsons' office will email U the form. One just fills it out and send back to his office. I don't have a Tele # for her directly only a fax and e mail addy.. I do have Dr. N's office assistant # and email addy. PM if U need either.
    Be well and Happy healing.
     
  10. Valentijn

    Valentijn Activity Level: 3

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    NAC has been essential to me - it's my "sleep drug" since it seems to turn off the excitatory effects of high glutamate levels, and my brain shuts down enough for me to sleep.

    As far as the methylation protocol, the B12 seems to help with pain and a bit with OI, but that's about it. My glutamate levels seemed to go down on NAC, but then went up when on NAC + the full methylation protocol + other stuff. I doubt the methylation protocol was responsible for any increase, but it didn't improve things either.

    But I'll probably try taking some extra folate again one of these days to see what happens :p
     
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  11. searcher

    searcher

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    Thanks cph13 When I was there they said they were doing the MRS results only in aggregate, but it may be worth me checking in with Diane again to see if they will make an exception. I think it was mostly just because they needed to do the analysis later and anonymously, not because there was anything sensitive that they couldn't release.

    Valentijn - That's really good to hear since that reflects my experience. I don't notice anything obvious from taking extra folate either way, but NAC does seem to have some brain-fog clearing capabilities. I had often seen criticisms of NAC on this board as cph13 mentioned so had been hesitant to try it, but it gives a great bang-for-the-buck, especially considering it's only like $5 a bottle.
     
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  12. cph13

    cph13 Senior Member

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    searcher &@ Valentijn I can do both SMP and NAC. This is VERRRY tempting. Brain fog lifted and I get to SLEEP! How much do I take and which brand are U people using. I am in the process of an iherb oda. THANK YOU both ever so much. Be well.
     
  13. liquid sky

    liquid sky Senior Member

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    I tried Savella/Minalcipran a while back. It was an extremely uncomfortable experience for me. Made me want to crawl out of my body. Severe anxiety, skin sensations like bugs were crawling on me. All around horrible experience.

    This may not be anyone else's experience, as I don't react well to anti-depressants.
     
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  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    By NAC you mean N-ACETYL CYSTEINE, correct?

    GG
     
  15. Valentijn

    Valentijn Activity Level: 3

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    I do Jarrow's NAC Sustain (extended release), 600mg, two or three times per day. The last dose is always half an hour or so before I go to bed.
     
  16. Valentijn

    Valentijn Activity Level: 3

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    Yup, that's the stuff.
     
  17. cph13

    cph13 Senior Member

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    Thanks Valentiin....and you do the methylation protocol too! This is v. interesting. I will give it a shot Be well
     
  18. Desdinova

    Desdinova Senior Member

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    Savella is one of the prescriptions I'm currently taking been taking it for over two years. Was ruff the first week leveled off the second. Does help with certain head related symptoms. Especially the tired (fatigue) eyes. The odd mix of gabapentin, cymbalta, tramadol, flexeril, ambien, atenolol etc. make things manageable enough to work, occasionally see family every once and a while but little else. I will say that I notice the difference when I've taken off Savella for short periods of time (for blood work). But not as much as when I've been taken off of gabapentin or cymbalta which I'm off for blood work related reasons now and man is my head killing me.
     
  19. loayachil

    loayachil

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    I just finished this study, and unfortunately had a negative experience. PM if you plan on taking it, and I'll tell you my story, so you can decide whether what bothered me will be in your consideration.

    Thanks,
    Lo
     

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