The Synergy Trial: Ritalin and Micronutrients

[BellaSC]

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

Thank you @freshbrew !
I never knew that there was a connection between hhv6 an my thyroid issues....and I'm a patient of Dr. Montoya's.
I'll definitely check into that and do some more research...
As I said, having a debilitating chronic illness is a full time job!

Hope you have a wonderful day!

 

[BellaSC]

Medical journal article on hhv6 and Hashimotos thyroid disease....
http://www.hindawi.com/journals/tswj/2013/867389/

 

[freshbrew]

Medical journal article on hhv6 and Hashimotos thyroid disease....
http://www.hindawi.com/journals/tswj/2013/867389/

Thank you for the link, Bella SC

i was just coming back here to post a link for you on hhv6 and hashimotos too.

http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/

It is from 2014 featuring an interview with a from a founder of a hhv6 organization.

Re: both being dr. Montoya s patients :

I think i found the hhv6, hashimotos association on my own.

Time with awesome dr. Montoya is understandably limited.

Note: you may want to research : Hashimotos associated with increased thyroid cancer.

I ended up haviing advanced papillary thyroid cancer in 2010.

Surgery was at stanford.

Dr. Montoya was kind enough to visit me post op.

Of note to be aware:
My thyroid cancer did not use the usual thyroid hormones to grow like "normal" people

. ( i.e. tsh t3 t4 remained all within normal limits while my advanced stage 4 thyroud cancer had its way.

Metastasizing into the soft tissue of my neck and my windpipe).

We m.e. peeps always have to be " unique!"

Recovery and response to radiation not the norm either.

Post op: My magnesium dropped like crazy inexplicably and had to be replaced post op iv.

Note: Even with Hashimotis my Tsh, t3, t4 labs supposedly were within the normal limits of western medicine.

My endocrinologist " didnt believe in " reverse t3 when i asked him to order it.

Have a happy night

 

[BellaSC]

Thank you for the link, Bella SC

i was just coming back here to post a link for you on hhv6 and hashimotos too.

http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/

It is from 2014 featuring an interview with a from a founder of a hhv6 organization.

Re: both being dr. Montoya s patients :

I think i found the hhv6, hashimotos association on my own.

Time with awesome dr. Montoya is understandably limited.

Note: you may want to research : Hashimotos associated with increased thyroid cancer.

I ended up haviing advanced papillary thyroid cancer in 2010.

Surgery was at stanford.

Dr. Montoya was kind enough to visit me post op.

Of note to be aware:
My thyroid cancer did not use the usual thyroid hormones to grow like "normal" people

. ( i.e. tsh t3 t4 remained all within normal limits while my advanced stage 4 thyroud cancer had its way.

Metastasizing into the soft tissue of my neck and my windpipe).

We m.e. peeps always have to be " unique!"

Recovery and response to radiation not the norm either.

Post op: My magnesium dropped like crazy inexplicably and had to be replaced post op iv.

Note: Even with Hashimotis my Tsh, t3, t4 labs supposedly were within the normal limits of western medicine.

My endocrinologist " didnt believe in " reverse t3 when i asked him to order it.

Have a happy night

Hello @freshbrew -
So very sorry to hear that you've had to also deal with thyroid cancer.
Hopefully you're doing much better and it's completely resolved?

I continue to be puzzled as to why endocrinologists and some doctors in general, don't listen to their patients
and examine all aspects of why a patient could possibly be feeling so crummy.
My endocrinologist has said that t3, t4 and reverse t3 have no bearing...kind of seems crazy to me.
Why would there be tests for these things then?
Since I continued to be so unbelievably fatigued, I got a referral to Stanford to see an endocrinologist there.
They wouldn't see me since my tsh was in normal range.

It is very frustrating when you have instincts about certain things but can't get anyone to dig deeper.

Meanwhile, like you , I continue to do my own research and read as much as my brain fogged cfs self can handle.


Thank you for sharing. It really gives me so much hope to hear from others and their experience.

Hope you have a wonderful weekend!

 

[Zensational]

My naturopath just sent around an e-mail that he is offering the treatment. Since Ritalin is a stimulant, I won't be taking it even in low doses. Even decaffeinated tea affects my sleep.
It may be of value to some others who aren't as sensitive as I am.

 

[knackers323]

haven't had time to read the thread but anyone tried the synergy trial or Ritalin?

 

[catly]

Yes, I was in the trial. I never found out if I got the meds or if I got the placebo, but after the trial I received several months supply of the K-Pax supplement and a prescription for Ritalin. I stopped everything after about 3-4 months as they did nothing for me, good or bad.

 

[BellaSC]

I was also in the trial but they dropped me after I became extremely overheated from the Ritalin..
.It was clear that I had received the " real meds"... I continued Ritalin for a short time but didn't like how I felt on it.
I just felt strangely wired but it did nothing for my energy level.
Felt as though it was burning out my already burned out adrenals.
I don't do so well on meds / pharmaceuticals overall.
The K-Pax supplement felt more useful than the Ritalin but I could not afford it (even with the discount they offered) and since they dropped me
from the study, they did not provide the 3 months they gave to others who completed the study.

 

[cb2]

Hi. Wondering if the Adderall is similar enough in chemical make up to work as the Ritalin did with the vitamins? Also. For those of you that work with Dr Montoya are they willing to prescribe the Ritalin?

Thanks!

 

[BellaSC]

Hi. Wondering if the Adderall is similar enough in chemical make up to work as the Ritalin did with the vitamins? Also. For those of you that work with Dr Montoya are they willing to prescribe the Ritalin?

Thanks!

Hello @cb2 -
I don't know about Adderall. but yes, as a patient of Dr.Montoya's they are/were willing to prescribe Ritalin.

 

[cb2]

thank you @BellaSC i am sorry they dropped you from the study- that seems unfair. kpax has a sale often on their vitamins..sometimes really good deals. and they say sometimes people are able to get them covered through certain insurances. the sale prices are alot better than the discount they offer at least from what i have seen.

I go back to see Jane Norris in a couple weeks.. i am going to try to remember to ask her about an Rx.

 

[cb2]

@BellaSC did you feel any improvement with the ritalin and Kpax while you were able to take them?

 

[BellaSC]

@BellaSC did you feel any improvement with the ritalin and Kpax while you were able to take them?

I definitely felt more energy and a clearer head. The full K-Pax protocol did seem to make a difference for me.
On the Ritalin alone I just felt more "wired" even though I take a full range of good supplements (not kpax).

One thing to be aware of which no one told me until I ended up severely dehydrated and in an ER two summers ago,
is that Ritalin can raise your body temp and cause you to easily overheat.
If you do go onto the Ritalin, pay a LOT of attention to hydrating with more than just water.
I started adding fresh lemons and sea salt to my water. That helped along with Vitamin Water, etc.

 

[cb2]

thank you @BellaSC - I really appreciate the tip! what a terrible thing that you had to go to the ER. I used to have really strange body temps too until I went on thyroid meds.. i started on nature thyroid, because it has both T3 and T4. Have you had any luck getting your Free T4 & free T3 measured since the last post in this thread? also sometimes low BP can be an adrenal needing support thing. I think.

how long before you felt the benefit Bella SC? I wish there were a way to get you the vits since you mentioned they help. are you by chance on kpax email list so you get noticed of the sales they have? not sure if that would help you or not- just wishing and hoping for you.

@SDSue wondering if you are still doing the synergy protocol and how was/ is it for you? if you dont mind sharing?

thanks everyone!

 

[cb2]

@BellaSC and others that have done or may be doing the synergy protocol. How many of the kpax immune vitamins a day did you take? was it 8 a day? thank you everyone.

 

[me/cfs 27931]

Was not in the study, but have taken Ritalin, Adderall XR, and Vyvanse each for several years. I have not been on a regular stimulant for over 2 years (I do keep a stash of 10mg Vyvanse capsules for the ~once a month emergency when I have to function).

Ritalin had the most unpleasant side effects, followed by Adderall XR, with Vyvanse having the fewest.

All 3 stimulants had significant benefits to my daily functioning and allowed me to work part time for almost 7 years, but at the expense of my long term health. Also, I had to manage regular thoughts of suicide while taking these medications.

I am now almost completely homebound and unable to work at all.

Yet, if I were to undertake a regimen such as in the Synergy Trial, I would definitely ask for Vyvanse as my stimulant of choice.

However, I agree with my current primary care doctor, who says that stimulants are "barking up the wrong tree".

 

[cb2]

i agree too stimulants are barking up the wrong tree...but i have been barking up so many other trees and not getting any benefit. what type of side effects did you have with ritalin? i seem to do ok with tiny dose of ritlain or adderall but not adderall xr, I only use betwn 1.5mg and 5 mg..am on a downward taper now. apparently the kpax vits are supposed to help prevent the side effects. I am sorry you had such a bad experience with the stimulants. i am trying to taper off them because i dont want to totally poop myself out ..but also being bedbound isnt' good either- that is when i get suicidal. hope you are feeling better and can recoupe some health.

 

[StrayCat]

I am taking Concerta(prolonged release methylphenidate)for AD/HD,I wonder what if I add the nutrients,works similarly...?(at least Conserta is good for my muscle weakness/pain and sleepiness)

 

[me/cfs 27931]

i agree too stimulants are barking up the wrong tree...but i have been barking up so many other trees and not getting any benefit. what type of side effects did you have with ritalin?.

When on Ritalin, I was prescribed 40mg/day.

Ritalin was for fatigue and a diagnosis of ADHD (which, ironically, recent neuro testing shows was a misdiagnosis). I had not been diagnosed with ME/CFS yet, but clearly I had the symptoms.

Although my doctor insisted I take it ever day, I only took it 5 days a week, allowing me to work yet somewhat manage the suicidal thoughts.

Among the Ritalin side effects:

• Sleep disruption, especially if taken in the afternoon
• Anxiety
• Chest pressure
• Peripheral neuropathy affecting legs/walking/driving mostly
• Sweating
• Irritability
• Mood swings (but never euphoria)
• Nausea
• Eye droop (after stimulant wore off)
• Lack of affect (after stimulant wore off)
• Suicidal thoughts
• General feeling of being unwell
• Heavy feeling in limbs, at times resembling partial paralysis

And of course it exacerbated a post exertional crash cycle that was very difficult to live with. Quality of life was very low. I endured it in order to hold a part time job, which was very important to me.

Edit: Upon thinking, I also endured Ritalin as it was the only treatment offered me. It was pretty much take the stimulant, or be offered no treatment at all. At times, I did take a mood stabilizer (Lamictal) to help manage the Ritalin-induced mood swings.

 

[cb2]

@Webdog that sounds terrible! I am sorry you had to go through all that. I did experience the "lack of affect" in the beginning it was pretty big, but seems as time has gone on it isn't an issue.. but i am taking a very very small dose compared to 40mg. also it seems to be helping me to reduce my sleep meds, dont ask me how or why.. i suspect because i am using less caffeine (was my go to for functioning before) - i think caffeine effects my system a bit longer than the rit / adderal. i have had some euphoria with it, even at the tiny dose...I have been trying to practice some mindfulness with this. I know there is no way i could tolerate 40mg that would defiantly send me over the edge, i am very sensitive to medications. I can't even take 10mg.

@StrayCat might be worth a try?