CQ 10 Question

[BS-ZIG]

Hi everyone,

I have what they said is drug related Parkinsons. I was diagnosed around 2012.

I took Sinemet for many years. Then about 4 years ago I weaned myself off. I did that after doing a lot of reading for years and I was no longer taking the bad drugs. I also had the DNA gene test and I know now what I cannot have.

I have been doing pretty good. Recently if feels to me like I have some of those symptoms I had years ago. I take a few supplements daily and finally this week after taking out one I suspected and feeling good and then I finally again tried to take it. Today! And now I have those symptoms.

This is my CQ10 causing it. Now I know.

Now I would like to know if anyone on this board takes CQ 10? I would have never guess this.

Does anyone here have experience with this?

Thanks

[kaypeeoh]

I take CoQ10 100 mg once daily. I've taken it for three years now with no problems.

[Bolt_Upright]

Could you please tell us what you mean by "I also had the DNA gene test and I know now what I cannot have"?

Also: You weaned yourself off of Sinement 4 years ago and you were doing good without it? That is interesting. Mucuna is not one of your supplements, is it?

You might like to join some of the Zoom calls MBAnderson is so nice to host. Lots of smart nice people on the call and you can bounce ideas off of them:

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[eschneid]

Hi BS..............

I am usually on the Sunday Zoom calls that Bolt mentions and I have been taking 1200 mg of CoQ10 for most of my 18 years with Park. Would like to hear what those symptoms are as well as how much Sinemet you were taking. Join us for the best Zoom in town!

[Delaraysbest in reply to eschneid]

Why 1200 mg? Do you take Sinemet and other drugs as well?

[TenaciousBlue in reply to Delaraysbest]

Probably based on this study. They did it again in ~2013? and it didnt meet its primary endpoint, but it still helped some people. I just started taking CoQ10 today for this reason. pubmed.ncbi.nlm.nih.gov/123...

[eschneid in reply to Delaraysbest]

Delaray................Yes, I take c/l + mucuna for my levadopa, amantadine & ropinirole. I take CoQ10 for the study TenaciousBlue mentions below and for the same reasons that although a failure of sorts, some felt there were enough positives. I take 1200 mg as I vaguely remember all these years later, that 1200-2400 was used in the study, but check that if you're interested.

[BS-ZIG]

Thank You all for your replies. My answer to you Bolt. The DNA site I used is called "Gene Site". This was about maybe 6 years ago. My MD was checking me to find out what drugs I was allergic to. I am allergic to most. Every single SSRI's. Then it also tells you which one are the worst. It was very informative back then. There are a few other classes of drugs that I cannot take.

And no I have never taken Mucuna. I try never to take anything except for my usual. And I also know I take a couple of drugs that are questionable to me. But I have decided the CQ10 has to go.

Eschneid,

Thank you for the invite to Zoom. Maybe in the future I might check it out. And also thanks to Bolt.

Have a great Day! And thanks for all your replies

[Chockly in reply to BS-ZIG]

Hi BS-ZIG and everyone else.

I too have Drug related Parkinson's and can't take SSRI's. However if I take Sinemet (a small amount) it lifts my mood a little, but no dose helps my rigidity at all. Does it help anyone else's rigidity? Or just tremor?

[MarionP]

I would imagine a fair number of people might, I have to take it because CoQ10 is necessary in the body and it is depleted by my statin which I must have for my cholesterol problems, was prescribed to coq10 after I had to have the heart surgery for clogged arteries. Plenty of people have more than one condition and their necessary treatments can interact with each other. It beats being dead 10 years ago though, so everything happens in comparison to the alternatives. But that aspect for you is very very interesting, I wonder if anybody else has that problem.

[LAJ12345]

my husband can’t take ssri either as they make him very hyper then suicidal.

He does take Ubiquinol but not coq10. He has had his coq10 levels tested and they were normal

[FreightTrainSinger]

Thank you for your post. I'm very interested in your process and time frame for weaning off the Sinimet. Thank you in advance for your reply!

[gginto]

I read that for Parkinsons it's best to take around 1000 mg of CoQ10 daily. Also NMN is very good as well..

[PKLC]

May I ask what supplements you take, and where did you have your dna tested and what was the cost?

[CV119]

which kind of coq10 do you take? There are two types UBIQUINOL or UBUIQUINONE? I recently read ubiquinol is the better one

[BS-ZIG in reply to CV119]

Ubiquinol is what I was taking. I did not know about the other one. I buy Kirkland brand by Costco.

[gomelgo]

I am sooo confused. You were taking sinemet for what, PD? Because you said "I have what they said is drug related Parkinsons. I was diagnosed around 2012. I took Sinemet for many years" Please clarify. Did you take Sinemet for PD, or did you develop PD because you took sinemet? And if the former, what were you taking the sinemet for?

[BS-ZIG]

Hi Gomelgo,

Well my doctor prescribed me the Sinemet hoping I would start feeling better. He told me I had Parkinson’s. There were a couple of drugs that I had been taking but no more. I took the Gene Site test . It showed me I was very allergic to some drugs. It was the cause of my Parkinson’s. I am off all of those and still take one I am least allergic to to and would love to quit. If I get off that one then it causes me horrible “brain zaps”. If you have never heard of this, then look it up on Google.

[park_bear in reply to BS-ZIG]

What you have had is usually referred to as "drug-induced parkinsonism", which can be reversed by withdrawal of the offending drug. It is called that in order to distinguish it from Parkinson's disease, which is not so easily reversed. I believe many of the commenters here are confused by the idea that you have reversed Parkinson's disease which is not the case.

[Chockly in reply to park_bear]

Hi park_bear

I too have DIP (arm rigidity and foot drag - started with writer's cramp) although my DATScan was positive for Parkinson's - but the scan was done whilst I was still on Sulpiride - they didn't bother to remove medication because they said it wouldn't affect the scan, but I have my doubts . I am confused as to whether I have PD or DIP. I have been unsuccessful coming off the offending drug. Sinemet doesn't work at all - does this mean it is not idiopathic PD? You seem so knowledgeable - I'd love your thoughts!

[park_bear in reply to Chockly]

DATscans are not foolproof. With that said, this reference appears to be on point:

thejcn.com/Synapse/Data/PDF...

"In addition, drugs causing parkinsonism, such as DRBAs, have negligible affinity for DAT. DAT scans may show symmetric uptake of radiotracer in the bilateral striatum in patients with pure DIP, even if they have significant parkinsonism (Fig. 2A). PD can be diagnosed in DIP patients whose DAT uptake decreases asymmetrically in the striatum (Fig. 2B).

Therefore, DAT scans may be useful for differentiating PD unmasked by drugs from pure DIP. Follow-up DAT scans of DIP patients with initially normal DAT scans exhibited normal uptake in the striatum, whereas scans of patients with initially decreased DAT scans in the striatum exhibited progressive reduction of striatal tracer uptake"

Sinemet effectiveness is proof positive of PD. With that said there are some patients in whom levodopa is not effective yet they seem to have Parkinson's. In your case it is possible the bulk of your symptoms may be caused by drug-induced parkinsonism, for which levodopa may not be effective.

[Chockly in reply to park_bear]

Thank you very much for your detailed reply. The link was very interesting, but sad, as my uptake is not bilateral, but more on the left side. My symptoms remain a bit atypical, but I find no pain or symptom relief anywhere. Sinemet, as posted, doesn't work, nor did a lengthy trial with various doses of B1. Very frustrating. This lead me to wonder if I had 'true' idiopathic PD.

I have just started Acupuncture with a Japanese lady who uses a lot of Chi energy to heal. I do Reiki myself. I am trying anything.

Best wishes and thank you.

[park_bear in reply to Chockly]

I experienced a major and lasting improvement with Qigong. Qigong literally translates to the "cultivation of Chi". My story here: healthunlocked.com/cure-par...

[Chockly in reply to park_bear]

Yes - how interesting - I have read your story and listened to the Youtube. I shall have a good think about that. Thank you

[Chockly in reply to park_bear]

Hi again Park_Bear,

Sorry to trouble you again, but you really are very helpful. As my DATScan shows asymmetrical loss should I assume it is unmistakably PD (is this assymetry fool proof evidence?), despite the fact that neither Sinemet, nor Madopar, nor Pramiprexole have relieved ANY of my rigidity (AS you rightly suggest, probably DI symptoms. Any suggestions for any drugs that could help my pain and/or rigidity are most welcome too. Thank you.

[park_bear in reply to Chockly]

I've already replied to you with what I found in the literature, which was not much, and we've already discussed Qigong. Additional ideas I can recommend:

• High-dose thiamine. Dosing instructions and other information at the links. Allow four months for full effect: b1parkinsons.org/

healthunlocked.com/cure-par...

healthunlocked.com/cure-par....

facebook.com/groups/parkins...

A good source of thiamine HCl is here: vitacost.com/vitacost-vitam...

• Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...

Implement the thiamine and the cinnamon one at a time and see how one works before proceeding with the other.

[Chockly in reply to park_bear]

Thank you.

[Gcf51]

What was you dose of Sinemet and how long did you take?

[deebee114]

I experimented with 400 mg CoQ10 and felt light headed and dizzy for days.