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The Synergy Trial: Ritalin and Micronutrients

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

  1. SDSue

    SDSue Southeast

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    Thanks so much, @catly . I'm so sorry the protocol didn't work for you and sincerely hope you find the combination that does! (and yes, the link works :thumbsup: )
     
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  2. Ruthie24

    Ruthie24 Senior Member

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    @SDSue- Good luck with the Ritalin. I found it helps keep my BP up better than midodrine does. However, I have to take a tiny dose because it also tends to aggravate my hyper-POTS type symptoms and can give me tachy as well.

    When I was looking into using it, I was surprised to see that it was "approved" for use in POTS so maybe that will help you get a script from your doctor.
     
  3. SDSue

    SDSue Southeast

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    Thanks soooo much! I was literally just preparing info for my doc and realized that the sympathomimetic effects of ritalin might be contraindicated in hyper POTS. The warnings (from rxlist) are nothing to ignore:

    May I ask what dose you took and the effect it had on your BP? (my BP is already running a bit high these days.)

    Thanks again, and if remember where you read the POTS/ritalin approval, I'd love to know.
     
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  4. Ruthie24

    Ruthie24 Senior Member

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    I'll try to find where I read that. Unfortunately I didn't keep the link. I'm sure it was on one of the drug info sites that came up near the top when I was researching it. I didn't dig really deep for it as I didn't expect to see that because I had always heard there were no approved drugs for POTS.

    I was prescribed 5 mg BID but take 2.5 mg qd (or rarely BID). It raised my BP closer to normal ranges (110's-120's) and gave me a more normal pulse pressure while standing. With midodrine I've noticed that many times it seems to raise my diastolic pressure without changing the systolic much so my pulse pressure is actually worse on midodrine at times.

    FWIW I also take 5 mg of Nadolol (Corgard) every night which works great for me. My POTS doc actually recommended that I change to Adderall rather than Ritalin as he says he has better success with it for his POTS patients but I haven't tried that yet.
     
  5. SDSue

    SDSue Southeast

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    Thanks @Ruthie24 . I have more POTS questions, but I may tag you in a different thread so we don't run this one off the tracks!
     
  6. Sushi

    Sushi Moderation Resource Albuquerque

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    @SDSue I found that Adderall worked better for me than Ritalin. It is 4 different amphet salts with different half lives so it was "smoother' for me.
     
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  7. SDSue

    SDSue Southeast

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    Thanks @Sushi - I got my Rx for Ritalin today (yay!) so I now have both options available and will try each. First, however, I need to order the KPax. Are you doing the Synergy thing, too, and have you noticed a difference?

    Trying to keep my hopes at a reasonable level!
     
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  8. Sushi

    Sushi Moderation Resource Albuquerque

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    Nope, but I think that I am "covered" for the supplements they offer. (That is from memory, haven't looked at it recently). Also, I don't take Adderall anymore but it was helpful at the time.

    Sushi
     
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  9. catly

    catly Senior Member

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    Good luck to you @SDSue! I hope you can keep us posted of your results.
     
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  10. SDSue

    SDSue Southeast

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    It took me about a month to gradually get up to the full dose of KPax Immune. Then I added in the methylphenidate (generic ritalin). I started with 5 mg of methylphenidate in the morning, and it was too much. I felt wired, headachy, and just plain ill.

    For the past week I've taken just one dose of 2.5 mg methylphenidate in the morning along with 4 tablets of KPax Immune twice per day. While i didn't feel much, looking back on the week I realized a few things:

    1. I mentally feel more like myself. I have a desire to plan and execute, which I haven't had since falling ill.
    2. I accomplished several things that had been on my to-do list for months - follow-up stuff like making appointments and placing orders.
    3. I enjoyed talking with a friend on the phone rather than just enduring it.
    4. I felt a little hope for the future rather than the underlying sense of impending doom.

    I crashed myself in the process, so caution is needed. Dr. Kaiser, the instigator of the Synergy Trial, is very adamant that participants not increase activity for at least 3 months even if they feel like it. Lesson learned? Probably not lol.

    Confounding factor: I was also able to get back on Famvir last week, as my liver enzymes had returned to normal.
     
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  11. Brian V

    Brian V

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    SDSue,

    That is very pleasant news. I am happy that you have had positive results. I will be communicating with Dr. Kaiser this weekend. He will be pleased to hear that feedback. I believe that his study test results have been pushed back to May 5th. Based upon my results, and now your results, I am imagining that the results of the blind test will be very definitive. I am imagining that quite a few people experienced what you have recently experienced, which is at least a 40% improvement.

    Dr. Kaiser will be delighted to hear an anonymous positive response. Thank you for sharing.
     
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  12. SDSue

    SDSue Southeast

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    Thanks, @Brian V . My fingers are crossed - so many "improvements" turn out to be nothing but a slight up in the normal ups and downs of ME. Time will tell.

    This is the main reason I started this trial. I am awful at implementing a balanced approach at supplementation. If nothing else, I know that I am getting a decent multi with most of the things I've tried on my own to incorporate on my own.
     
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  13. Bob

    Bob

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    Thanks for posting your experiences, Sue.

    This is the sort a response I suspected we might see from stimulants: I expect that some patients may find the boost to be helpful, both mentally and physically, esp in the short term, but I have deep doubts about whether any stimulant will prove to be a protective treatment or long term solution for ME.

    A successful treatment shouldn't lead to a relapse (i.e. a patient deteriorating when undergoing the treatment).

    In my opinion, and personal experience, a relapse is exactly what a treatment should be protecting us from. So from a personal perspective, I wouldn't touch any stimulants with a barge pole because (like many of us) I don't experience crashes, but I experience CRASHES. (i.e. crashes from hell that can last years.) If there was a high success rate in a rigorous trial, then I might be tempted to give it a go. But otherwise I'll probably stay clear.
     
    Last edited: Apr 18, 2015
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  14. SDSue

    SDSue Southeast

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    You're welcome, Bob! I'm sorry to hear of your severe crashes. Before I was diagnosed with ME/CFS, I crashed myself so severely, repeatedly, that I was in bed for nearly a year. I live in fear of that happening again and appreciate your kind warning.

    Stimulants seem risky to me, as well, for a couple of reasons; tendency to cause crashes and addictive/withdrawal potential.

    I had to weigh those carefully against potential for gains. For me, it's worth the risk. KPax Immune has been studied for over 20 years, including this large double-blind study on AIDS patients which led to insurance approval in New York state. (granted, it was funded by a large pharm company). And now, the Synergy Trial with results due any day. (@Brian V - maybe you can give us a few hints after your visit with Kaiser.:D )Unfortunately, there just aren't many well-studied options for us yet.

    Nothing has really improved my activity level or my brain fog, so I'm giving this a go. If nothing else, I am getting a well-studied multi that I can tolerate. By keeping the stimulant to a very low dose, under the "feel it" threshold, I'm hoping to avoid dependence and / or withdrawal.

    Good, bad, or ugly, my temperament doesn't allow me to sit back and wait patiently for a cure. :whistle: My adopted motto will sound familiar: "First, do no harm."
     
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  15. freshbrew

    freshbrew

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    Hi Sushi and all,
    Adderall helps me to a point in many areas such as : gives me a bit of hope in the day, increases circulation and BP, gives me energy, allows me to be upright for a bit.

    Being on Adderall allows me to get out of bed, shower, even stretch on "good days."

    The adderall helps after a bath or shower to decrease the warm water crash effect on my body.

    Adderall does assist my brain fog, energy level and helps to get my circulation and low blood pressure functioning a bit better.

    I was started out in 2008 on 5 mg (child dose) and eventually tolerated 20 mg three times a day. I have not wanted or needed more than that.

    I crash on or off the Adderall everyday at about 2 to 3 pm. So at least with the Adderall I have a bit of energy before my usual crash.

    Albeit I am completely disabled and housebound even on Adderall as the disabling effects of the cfs/m.e. even on Adderall do not allow me to work, socialize etc.

    I do not take the Adderall on days when my symptoms are at their worst. No need for energy or a burst of hope from Adderall if I know I am down for the count that day anyway.

    I have no withdrawal effects from not taking Adderall for a few days.


    Dr. Montoya (Stanford) has been my m.d. since 2008. I've advanced through the antivirals to Valcyte 900 mg once a day for over a year. No improvement.

    I am in the category of long term cfs/m.e (over 14 years) so recovery is basically nul and void per common sense reality of trends in our community thus far.

    Adderall is a C2 prescription so you have to get it from a M.D. who can write C2 prescriptions (like a Psychiatrist).

    Hope this info helps someone. We are all unique bodies suffering a horrific Living Dead Disease.
     
    Last edited: Apr 18, 2015
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  16. helen41

    helen41 Senior Member

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    what an interesting thread! I was put on Modafinil about 4 years ago and it was like a life saver for me. I tried a couple of times to stop it, but my speech would slow, and I could fall asleep anywhere (even the Costco food court LOL)
    I am better now than I was, I think primarily due to rest.
    6 months ago, I was put on a variety of supplements to support the mitochondria, mainly the same ones in the synergy trial, that Tittelbaum also had in his book. I ended up in hospital with a BP of 211/141. They cut me off all the supplements, and the Modafinil too.
    I survived being off Modafinil better than I had anticipated, and decided not to go back on, in the hope that I could instead, try the Synergy protocol, as I have detectable mitochondrial problems.
    I have been adding one vitamin/element per week, working up to the full range that was in the trial. So far so good, but it is costly, and a heck of a lot of pills. LOL
    I hope that by the time I go back to the specialist, I will have tested whether there is any supplements there I cannot tolerate, and can try the addition of low dose Ritalin.
    For me, without a goal, this illness is difficult to manage. My goal is to try the protocol for myself, as it makes sense for me. TY for all the good input.
     
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  17. BellaSC

    BellaSC

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    Hi @freshbrew -
    I've been a patient of Dr Montoya's since 2008 as well...After I suffered dehydration and was dropped from the Synergy trial, one of Dr. Montoya's assistants wrote me a script for Ritalin that I took with my own combo of supplements. I took it for several months and recently stopped taking the Ritalin. I wasn't feeling much of a difference -especially after being quite ill and bedbound for almost 4 months from late October through February. As the weather was changing and I wanted to plant some veggies in my garden, one of the key side effects of Ritalin is that is causes your body to overheat much more easily. As I have issues with my ability to regulate body temps- I can get really super cold and then can get very warm, it made sense to stop the Ritalin. So with warmer weather coming up, be careful if you are taking Ritalin and make sure that you stay super hydrated and out of hot sun.
     
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  18. freshbrew

    freshbrew

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    Thank you Bella SC:)
    I will be extra careful in Sun on adderall thanks to your post.

    Questions for you in hopes to rule in/ our other causes of your overheating while gardening:
    1. Is your free t3 low?
    2. Are you positive for hhv6?


    Reason: the above apply to me and have caused my history of overheating issues way back before adderall.

    I only overheat on adderall if my m.e./ cfs symptoms are at their worst.

    My low t3 and hhv6 seem to be the culprits of my long history , random at times, of overheating dating back to the late 80s.

    BTW you can Google and find a great hhv6 site if it applies to you.
    Let me know if you cannot find.

    3. Do you have history of low or low normal blood pressure?
    Reason I ask: issues with electrolyte imbalance in some of us when trying to stay hydrated.
    you say you stay hydrated well.

    In those of us m.e./ cfs with low to low normal BP,
    overhydrating without having enough salt ( prefer sea salt, best for me is pink himalayan) it makes other m.e./ cfs symptoms worse than the dehydration felt.

    It also immensely depletes potassium when overhydrating with free waterwater in those of us who have low , low normal BP.

    I.e, do doctors and medical staff compliment you on your " good blood pressure " now? ( 120-130/70-80)

    Was your BP lower in your younger years I.e. 90-100 / 60s to 70:) before m.e./ cfs hardened your arteries to raise it little by little TO the current so- called " normal?"

    Then you too , like me, need to add sea salt to your water when hydrating to keep your electrolytes balanced.

    Just sharing that which I learned the hard way.


    Wishing you and all here many good moments today:)
     
  19. BellaSC

    BellaSC

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    Hello @freshbrew !
    Thanks for all the great information. I always learn so much on this site and as I consider myself pretty well educated on me/cfs, it's amazing how in-depth the research is that you have done. I realize that my brain fog has impacted me more than I've realized when reading what you're sharing. Thank you for reaching out and sharing.

    So to answer your questions, yes,
    1. I have hhv6. as for
    2. free t3 I'm not sure...
    .I am hypo-thyroid and pushed my doc to look at t3, t4 and reverse t3, etc. It's been like pulling teeth to get more testing beyond tsh. I take synthroid for my low thyroid.
    3. My blood pressure is typically very low as well- 90-107/ 60....it rarely peaks up above this and I'm 59.

    As you were saying with hydrating, I too, have realized that Ive needed more salt in my diet.
    Being a super healthy eater, I cut a lot of salt out, but have added that back in recently as I started reading more.
    I also use Pink Himalayan salt.
    For awhile, I would get an odd sore spot on my bottom lip whenever I ate the Pink Salt...seems to have also calmed down. None of my docs could ever explain why that was happening.

    Ive also been drinking alkaline water...since I have entero virus -specifically Echo Virus 30, and it's transmitted by water, Ive been hyper vigilant about the water I drink. I started by boiling all my drinking water and now just go to the water store and schlep 3 gallon bottles of filtered alkaline water.


    Can you tell me more about how cfs hardens our arteries?
    Would love to know more about this and what you've read....
    I also have high cholesterol but don't eat a lot of high cholesterol foods. weird...
    There sure is a lot of weird stuff that comes along with cfs isn't there?
    It's really a full time job dealing with a chronic illness like me/cfs.

    I appreciate your sharing. It helps me so much to hear what others are doing, have learned, etc.

    Thank you so very much!
     
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  20. freshbrew

    freshbrew

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    Hi Bella SC And all,

    Bella, regarding sharing my info regarding cfs/ m.e. and hardening arteries:

    I 'll work on finding the research again and a link when I feel better.


    I only remember finding proof of artery hardening research info years ago when looking for answers related to why my cholesterol was elevated.

    With my good eating habits and long history of competitive sports and exercise, lack of family history of high cholesterol or strokes, like you , there was not a good explanation for my high cholesterol.

    It prompted my to inquire into a possible relation of cardiac, artery, etc issues related to m.e / cfs.

    Currently I think I read that Dr. Montoya(?) was starting research on cardiac issues related to m.e/CFIDS.

    Not sure of the specifics of the research project.

    You mentioned you too had hhv6.

    You may want to check into hhv6 and its correlation with Hashimotos autoimmune thyroiditis - a form of hypothyrodism.

    Hope you have a good night:)
     

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