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The Synergy Trial: Ritalin and Micronutrients

Discussion in 'Active Clinical Studies' started by catly, Oct 9, 2013.

  1. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I'm baffled why people with CFS would be given Ritalin as it'll likely make the CNS symptoms worse.

    It could well wake people up from brain derived 'fatigue', but likely at the expensive of further sympathetic nervous system arousal, which is the last thing patients want.
     
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  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just a guess, but maybe its something other than its stimulating effects that people are benefiting from. Many seem to do ok on very low doses, probably low enough that a well person wouldnt notice any effects. But i wonder if its the effects of increasing dopamine that is helping some of these people. Dopamine at the correct level is neuroprotective, has anti inflammatory properties. I know very little about ritalin but have read that modafinil does have this neuroprotective and anti inflammatory effects, i guess there is a cross over of this between different meds that raise dopamine levels??
     
  3. barbc56

    barbc56 Senior Member

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    Any updates?

    Barb
     
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  4. BellaSC

    BellaSC

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    The Ritalin is very low dose and honestly, I don't even "feel" it...I'm not hyped up.
    I'm just able to get out of bed and fix my meals or run errands....
    My Docs at Stanford, increased my dose, but so far, I haven't increased it.
    Listening to my gut intuition...
    I was willing to try it since my fatigue level is generally significant .
     
  5. Ruthie24

    Ruthie24 Senior Member

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    I tried to get on this study but was denied due to abnormal EKG. However, they said I could do the same thing on my own if my doc would prescribe the Ritalin. I had given the info to my PCP and POTS neuro who agreed that it would be helpful. My ME/CFS doc discouraged me from using it.

    After watching the video, it seems like it is the combination of nutraceuticals and the low dose Ritalin that is helpful. The Ritalin acts like a catalyst for the nutrients I believe he says in the video.

    Anyhow, I've been using the Ritalin off and on along with many supplements since Sept. (along with a combo of antivirals and celebrex which I've been on for some time) . I initially started with 5 mg 2x/day but it triggered hyper-POTS symptoms within 2 days. Now I've figured out that 2.5mg in the morning (with rarely repeating a dose in the afternoon) is just about right for me. It has made a huge difference for me.

    I have stopped and started both the Ritalin and the supplements in various combinations and for me, I need both for it to work. Using the Ritalin alone made me hyped up and just as unable to focus but because I was so hyper. I am not using the K-Pax formula but am using a combination of supplements based on my 23 and Me results.

    When I stopped this combo for a period of time to wean off some other meds, I definitely noticed a huge difference both when I stopped and restarted it. And, I've been able to stay off the other meds. (Yay!)

    It's hard to say exactly what is causing what because I've done so many different things. Clearly the antivirals have been helpful, I did see some improvement changing my NSAID to celebrex, but the Ritalin and nutrient combo has definitely been a huge help for my energy and brain function. I am able to do things now I haven't been able to do for over 5 years. My sleep is much better as well. Unfortunatley my NK cell function has continued to drop and I'm still getting abnormal biopsy results so it hasn't helped my immune system yet.
     
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  6. Sushi

    Sushi Moderation Resource Albuquerque

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    This is great--so happy for you! Have you ever tried Adderall instead of ritalin? My doc prescribed both for me (at different times) and Adderall was better for me. Also a tiny dose--2 - 3 mgs.

    Sushi
     
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  7. Brian V

    Brian V

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    I was a part of the original Synergy Trial and I have had significant and positive results. I am still on the program and I feel that I am continuing to improve, but certainly not without challenges. I will have a chance soon to see the summary results of latest study that wrapped up in 2014, and I am sure that there will be a very discernible trend of success. The program of having a private doctor and buying the supplements is very taxing financially, but in my mind it has improved my quality of life tremendously. I am hoping that the test results will qualify for the program to advance with the goal of having an FDA approval of the first prescription combo drug that would be universally approved by the insurance industry.

    I have been on the program approximately two years. I have not had any noticeable side effects other than appreciating the positive results. My significant results have been mostly with cognitive clarity. I have been able to get back to work with high level of information processing. I still have all of the typical symptoms but I have been able to work through the symptoms with will power and positive thinking. I still have dark and bad days, but they are occurring with less frequency.

    I would be glad to share any information about my experience with K-Pax and Dr. Kaiser's program.
     
  8. Denise

    Denise Senior Member

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    @Brian V - As usually happens - a post like yours about improvement prompts many questions.
    I notice that this is your first time posting on PR.
    How did you find PR?
    When did you join?
    What were your worst symptoms before you started the Synergy Trial?
    Can you provide details of the differences that you notice now?
    How long had you been sick before you started the trial?
    Who diagnosed you (and according to what criteria)?
    You mention bad and dark days - are you referring to post-exertional malaise?

    Many of us get flattened by trying to push through symptoms. So please excuse my skepticism about being able to work through symptoms with will power and positive thinking as that is something that hasn't worked for many people on PR.

    I hope you will share information with us - we all want our lives back and we appreciate hearing how others have been able to achieve improvement.
     
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  9. Brian V

    Brian V

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    Denise,

    I found PR last night by accident. I just finished a good book, The Boys in the Boat, it was well written with a similar style to that of Laura Hillenbrand's. I spent a few minutes looking to see if she was working on a new project and I came across some articles and links. I started to look around to see if there was any buzz regarding the Synergy Trials and it led me to this environment. It's nice to know that I am not alone with these crazy symptoms and a lonely battle.

    My symptoms are very similar to many others that I have read. I came down with a major flu in 1990. I remember being totally wiped out for at least 10 days. I recovered enough to function but I had a bronchial infection that I couldn't overcome for quite a while. Shortly after that I developed a very frightening food allergy where I had these incredible headaches from eating normal food. I was eating canned tuna and salmon and a few other things that didn't trigger the headaches. I starting my rotation of doctors and tests that hasn't stopped yet.

    I would say that for at least five years my main issue was headaches, depression and mild fatigue. The first significant diagnosis was around 1992. I was prescribed Prozac, B-12 and gammagobulins. The latter two required that I had to inject each into my thigh muscles. I don't know if that program helped at all, I was pretty sick and things were pretty dark. The doctors and tests continued.

    Somehow I had stabilized and had a decent lifestyle for about 10 years. It seems that my symptoms changed to be overly sensitive to environmental events. That of course required years of allergy testing, weekly shots, insurance issues, etc. Up to this time I had serious bouts with brain fog. When it came on

    The last 10 years have been a very challenging. Just like everyone I had all of the ingredients of a perfect storm. I had a stressful job in construction management, a challenging relationship and a compromised immune system. That is when vertigo, fibromyalgia and leg cramps started wreaking havoc. My sleep pattern started disintegrating during this time as well.

    Throw in the recession and being out of work for approximately two years and I found myself in what felt like very serious trouble. I felt like I was walking dead with uncontrollable blood pressure. I was still going through the rotation of doctors and tests, and of course a multitude of meds.

    Almost three years ago I was desperately searching the internet for hope and help. I came across K-Pax and the associated article about Dr. Kaiser and his history and mission. He was just starting to put together his original Synergy Trial and he was looking for candidates. I was contacted by Dr. Kaiser via phone, and we conducted a qualifying interview and made arrangements for an office visit. We met, discussed his program and proceeded to establish a baseline of my physical well being for the testing.

    Within a couple of months I was pleasantly surprised to be able to navigate through my brain and process information without the stifling fog that is acutely prevalent with CFS patients. It has not been a miraculous breakthrough where I feel cured by an stretch of my imagination. I would say that the good days were about equal to the bad days in quantity, which was a significant improvement. I feel that since I started the program my body chemistry felt much better, my digestive system is much better, and I realized that I haven't had any fibromyalgia symptoms for quite a while.

    I have improved and plateaued a couple of times. I have felt pretty good and I start doing projects that I have been wanting to accomplish and I over exert myself and find myself heading for a crash. During the time that I have been on this program I have eliminated all of the different meds that I had been prescribed over the years with exception to blood pressure meds. I think I misrepresented the power of positive thinking in my first post. I feel lucky to have had the opportunity to break through the fog and be able to think and process emotions and information for the first time in many years. That has created some momentum from within that has made me feel more positive about the future. I still have a multitude of symptoms that would bring a normal healthy person to their knees such as the three week insomnia binge that I am just coming down from. The lack of sleep starts impacting and impounding the state of mind, but knowing that I can get to my brain and process information logically has given me hope and the will power to try to get to where I can enjoy my life again.

    To answer your last question I refer to dark days as feeling despair and hopelessness, but post-exertional malaise is probably from the same family.

    I have not told very many people about my condition or the history, so this feels unusual to post it on a forum, but if the information is helpful to any others with a similar condition then I will be pleased.

    That wasn't a quick answer, let me know if there is anything else I can share regarding this journey to date.
     
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  10. Snow Leopard

    Snow Leopard Hibernating

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    Hi @Brian V, I'm glad that you have seen some improvment!

    Have you tried taking just the Methylphenidate and not the nutritional supplements?

    The reason I ask is because the trial didn't have a separate group for Methylphenidate only, or nutrients-only. Methylphenidate itself has been shown to have benefit in a blinded RCT.
    Cynically, I suspect this trial is an attempt to market their nutrient supplements, without actually providing any specific evidence that they work, either alone or in combination with Methylphenidate compared to Methylphenidate without the supplements.
     
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  11. Starfive

    Starfive

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    Hi Brian,
    I have a question about the pain and especially in the legs which I have in spades. You mentioned improvement in the cognitive process but not about the leg pains. Any improvements? What would you attribute any improvements to?
    Thanks for posting your experiences.
     
  12. Denise

    Denise Senior Member

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    Thanks for your reply.
    I have several additional questions but will ask them later.

    I am not sure I understand what you are saying in the quote above. I have not heard post-exertional malaise equated to despair or hopelessness.
    I hope you can elaborate further on this.
     
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  13. catly

    catly Senior Member

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    Just to update everyone on my status since I'm the one that started this thread. I signed up and completed the Synergy trial. I can't say that I experienced anything good or bad during the trial. I basically remained the same. After the trial was over, my ME specialist prescribed the Ritalin and after some follow-up on my part, I finally received my "free" K-Pax supplements.

    After starting the "real" supplements, I believe that I was in the control group because there is a big difference in the smell (scent) of the supplements I received for the trial vs. the "real" supplements I received after the trial. The trial supplement smelled rancid honestly, while the K-Pax supplements have no smell.

    So after taking the "real" Ritalin and K-pax pharmaceuticals for 3 months now I can safely say that I feel NO effect from either. So I will be stopping both the Ritalin and will not be re-ordering any K-PAX.
     
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  14. alex3619

    alex3619 Senior Member

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    Thank you for letting us know @catly. I am sorry it did not help you, but this kind of research moves our understanding a step forward, even if its only a small step sometimes.
     
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  15. lnester7

    lnester7 Seven

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    Independently of what you use, I think we all need a good multivitamin, because or some reason we cannot absolve nutrients in the cells,. My LP showed malnutrition!!! Despite all the juicing, eating healthy.....

    I think I have been in the more active side because since the beginning I used supplements, and I can see a difference after being on them for a few months: From fatigue to fantastic Vit, Or the all In one (Dr Yasko one). Just compare labels and go high on Bs. I am not doctor and you knwo what make sense for each of you. This is my humble experience.
     
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  16. Brian V

    Brian V

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    Starfive,
    I still have very unique cramps in my shins and behind the knee. I have been riding a stationary bike quite a bit lately and that seems to help with the cramps, but they are still lurking and very painful when they decide to 'Activate' (Tiger woods Joke)
     
  17. Brian V

    Brian V

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    Denise,
    I think that during PEM stage I feel depressed with those feelings of despair.
     
  18. Valentijn

    Valentijn Senior Member

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    If you had ME, riding a stationary bike would be making you much sicker and triggering symptoms: swollen lymph nodes, full body pain, orthostatic intolerance, etc. It doesn't directly trigger mood changes, though perhaps that could be a secondary reaction to symptoms.

    But feeling better from exertion pretty well rules out the possibility that you might have ME. There are some disorders where exercise does help, such as Reflex Neurovascular Dystrophy. For that there is usually an underlying autoimmune disease, and a flare up can result in decreased circulation. Exertion can be painful, but repairs the circulatory problems, so can be therapeutic in that case.

    Exertion doesn't help ME patients at all.
     
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  19. SDSue

    SDSue Southeast

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    Does anyone remember where the latest data was discussed? I think maybe it was on a youtube video? I want to ask my doc to write me an Rx for methylphenidate so I can try the synergy protocol, but I need some solid evidence.

    thanks
     
  20. catly

    catly Senior Member

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    Hi
    @SDSue I received the following email from the K-Pax people--it contained the link to the youtube video with the latest results.

    I've been meaning to post it, so thanks for the reminder--I hope the link works.

    Also, please note that I haven't watched the video yet, unfortunately, neither the K-Pax supplement or the methylphenidate seem to have an effect on me either positive or negative.
     
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