Mild PD and B1

[singledot]

I was diagnosed with PD in 2021. Have had it since 2016. A very mild case compared to what I've been seeing. I am interested in communicating with those who have mild cases and are interested in, or are doing the B1 therapy. Anyone out there doing this?

[Gcf51]

I contribute my mild to B1, 1 year no progression< I recommend Dap1948 's book and Facebook group. facebook.com/groups/parkins...

[park_bear]

Discussed here:

healthunlocked.com/cure-par...

[Rupa88]

good for you

You are lucky

[Xauxatz]

I am the same. Mild symptoms, no progression yet, 1.5 years in. On B1 since the start

[singledot in reply to Xauxatz]

Thanks for the info. I'm kinda in the same spot, but just started B1 in March. I'm on my own using Daphne's book. I don't want to overdose, so am going slow. I have a couple questions. The primary one is -- is the level of B1 needed related to the severity of PD? The only tremors I have are my left hand and sometimes the right. (They tend to trade off -- if one is quiet, the other starts moving.) On the MDA-UPDRS Rating Scale (done every week), I have 5-7 2s, a fair number of 1s, and a lot of 0s.

I'm doing sublingual and started with 100mg 3x a week. Concerned I could overdose, the first two weeks I did only 30 min instead of 45. Then went to 45 min. This week I upped dosage to 4x a week, 45 min.

I see some improvement in the areas tested in the Rating Scale, but no change in the hand tremors, which was why I upped the dosage.

Does any of this relate to your experience? I'd be interested in how it is for you. Thanks ahead of time for anything you wish to share.

[Xauxatz in reply to singledot]

Hi - yes I had many symptoms that are now gone or reduced. Now I have weakness in hand and leg, reduced arm swing and sometimes a garbled or hoarse voice. That’s all. I have taken 2x500 mg since the beginning and now take 750 mg per day. I understand it varies a lot what you need. I can’t give guidance but check Daphne’s Facebook group for B1

[singledot in reply to Xauxatz]

Thanks. Are you doing sublingual or oral? I'm just comparing stuff and understand there is a large difference in the dosage for those. Will look into Daphne's FaceBook. I'm just not a FaceBook person, which is one reason I'm here.

[Xauxatz in reply to singledot]

Normal oral / best of luck

[Pixelpixie]

started B1 two months ago with mild unilateral tremor. Seems to be helping but increasing dose very slowly. Join Daphne’s FB group for support and files

[singledot in reply to Pixelpixie]

Thanks for responding. I was wondering how you determined the initial dose and what 'very slowly' means. I'm taking weeks.

[Pixelpixie in reply to singledot]

I’m taking 12.5 3x/wk. it is approaching 2 mo. I’ll probably increase one dose to 4x/wk soon

[Pixelpixie in reply to Pixelpixie]

BTW, I take EZ Melts, not the oral

[singledot in reply to Pixelpixie]

Thanks. Will look into it.

[Xinguila22]

Hi I was dx 2018 at 51, right side tremor. Only started on sinemet and rasagiline last September and February this year heard of B1 and 3 months on I can write again and fatigue is gone. I have it mild so far and I hope to stay like this for as long as possible but I think it’s a combination of exercise, I play football once a week, run and do weights with a personal trainer, changed my diet and I’m also gluten free. I use supplements and try to sleep well and I have a good social life. Contact with nature is also very important

[Markbit]

You can check my profile. On B1 around 5 years now.

[singledot in reply to Markbit]

OK, this is going to sound strange to many, but this is the first time I'm on social media of any type. Where do I find your profile?

[Parkwarrior]

My partner has PD, diagnosed in 2021, although he showed mild symptoms, such as constipation, for several years before. He has never taken the prescription meds, such as dopamine. He started in 2022 with Sugar Shift, a probiotic developed for PD by Biotiquest, and that helped with the constipation for a while. It also seemed to help reduce some symptoms. Then we read about B1 and he began taking the subligual type in 2022. Had a difficult time managing the dosage and after many trials, gave up on the sublingual and started with 25 mg of the HCL type last year. He takes it twice a week and his symptoms have remained stable with no worsening for at least a year. He has also done Rock Steady Boxing for over 6 months. It has been good for him in general, although I haven't noticed any symptom changes. He takes several supplements, Bs, magnesium, C, D3, K2, glycine, but nothing extraordinary.

[kaypeeoh]

I'd consider I have a mild case of PD. I have a tremor and I have constipation. And nothing else. No stiffness or slow-moving or balance problems. I've tried most everything mentioned on this site over the past years. Nothing helps or hurts my condition.