IS ANYONE WITH NON TREMOR DOMINANT PD(PIGD) USING HIGH DOSE THIAMINE PLUS C/L?

[OREOLU]

Hi,if the question above applies to you, does high dose thiamine work for you?what symptoms does it help with?And what dose are you taking? Also ,how long have you had PD .Can you say categorically that,it is not the c/l that helps to treat those symptoms? Your response would be highly appreciated.

[jimcaster]

I am non-tremor dominant and began taking high dose thiamine within 2 weeks of being diagnosed in May of 2018. After initial trial and error with dosage and several emails back and forth with Dr. Costantini, I settled at a dose of 1.5 grams per day, which I continue taking to this day.

My dilemma is that I really never lived without thiamine while having PD so I can't attribute it to any particular benefits. Still, I take great comfort from knowing that I still feel almost completely normal and I dare say no one except a trained specialist would guess that I have something wrong--unless they watched me write. I am not taking any medication.

As with any supplement or medication, it comes down to a cost/benefit analysis. Because any excess thiamine is excreted and I haven't heard of or noticed any side effects, the risk seems very low. The experiences of Dr. Costantini's patients and others on this site have convinced me that the benefits are well worth it. I do not believe it stops progression, but even slowing progression or helping with symptoms like fatigue are good enough for me. In one of his first emails to me, Dr. Costantini said "You'll be fine forever." More than two years later, I have no reason to doubt his wisdom and sincerity.

[albachiara2 in reply to jimcaster]

Questa bella frase del dottor Costantini “starai bene e per sempre “ mi commuove, oggi che lui non c’è più, e contestualmente mi dà forza e speranza. Sono felice che tu abbia questo stato di salute soddisfacente grazie alla terapia con la b1

[Gioc in reply to albachiara2]

Me too.

This is the difference between a clinician and a scientist, their great humanity. Dr Costantini was a great clinician and a great humanitarian.

[OREOLU in reply to jimcaster]

Hi jimcaster,thank you for the response.

[Enidah]

I fit your description and it is definitely the C/L that helps with symptoms. I take 1 -2 g of B1 a day. Why not? I’m covering the bases. It’s so hard to tell if these supplements or whatever help. I know the meds help, that’s obvious, but with the others it’s very hard for me to tell. The other thing I know helps is exercise and just simply doing things. The more I do the more I can do. The more I do the better I feel mentally plus physically, of course.

[OREOLU in reply to Enidah]

Hi enidah, thanks for your input.

[ruff1]

My husband has been diagnosed 14 years on stelevo, / Ropinerole/ Xadago and has restarted vit b after a few months of stopping . He stopped as we read an article about taking Vit b that dissolved under his tongue but low dose . He noticed a deterioration in his symptoms- freezing more not able to get out of bed . Two weeks ago we bought the powder again and started on 50mg twice a day then increased after a week to 1g twice a day . Very rarely freezes not and no issues getting out of bed . Hope this helps 😀

[OREOLU in reply to ruff1]

Thanks for your contribution,ruff1.

[LindaP50]

Husband diagnosed 3 years ago. No tremors. Took C/L for about a year before learning about the HB1 protocol. States the HB1 helped with keeping him loose, not so rigid.

With several uti's recently, hubby is have trouble with freezing and festinating. Neurologist told him today to up the does of C/L by adding 1/2 tablet 3x daily. He was taking total of 4 HB1 (2 at breakfast and 2 at lunch); may be time to reduce and go to 0, wait a few weeks and start up again with HB1.

[OREOLU in reply to LindaP50]

Hi Lindap50, are you saying that it is the B1 that is keeping your husband loose, and less rigid,not the C./L? How can you prove this?

[LindaP50 in reply to OREOLU]

Hard to provide proof. He was on the C/L and was rigid. Learned about the HB1 and he had improvements very quickly (about 1 week). We figure its the HB1.

[Millbrook in reply to LindaP50]

D Mannose is great for UTI. Amazing discovery. Saved me from many courses of antibiotics which I had to take before

[etterus]

I’m a71 yo PIGD of 20+ years duration. I have also had DBS 5 yo. I started 1.5 grams of b1 hcl going on 2-3 years. I have found it to be subtle but noticeable with both physical and psychological issues. I stopped taking it for 4 months and slowly reinstated it noted a decrease in foot dystonia and constipation. I have also found more energy with less apathy.

[OREOLU in reply to etterus]

Hi etterus, how could you have proven that B1 helped with dystonia and not Dbs? Did you turn off the Dbs to observe the effect of B1,on dystonia?

[etterus in reply to OREOLU]

No I didn’t manipulate the DBS I have some dystonia almost every day when my Rytary is going away.

[Lindiada in reply to etterus]

Just curious, what kind of pain do you have when rytary wears off. Is it intense? Is there anything you take for the dystonia?

[etterus in reply to Lindiada]

I have not had the severe “Charlie horse “pain like I had pre-DBS. That pain was all encompassing. The best thing I could do was to get on my knees in front of a chair or couch and position my toes in extension, up toward my knee cap while leaning my butt back to my heels. At times this position was the only way to get some sleep 0-10... 9

Since the DBS the worst is a 5. It is usually a consequence of a combination of events that includes fatigue from excessive activities, change in environment or weather, stress that is usually related to anxiety and the missing of a dose of Rytary.

I can usually find relief from a 1/4 dose of klonazapam or a dose of Rytary. A regular c-l dopamine helps also.

[felixned in reply to etterus]

Etterus, little off topic question:

My neurologist suggested that I consider DBS. I don't have tremors and c/l does help but I have dystonia in the morning, dyskinesia, and frequent off periods. What can you tell me about your DBS experience? I am very sensitive to what I eat. Even small amounts of animal protein result in bad off periods. Is it something that you had as well ? If so did DBS help you with this problem? Thanks,

Felix

[etterus in reply to felixned]

I’m unaware of any dietary relationships and dystonia... maybe if I would investigate this I could find some. It’s not likely to be an obvious issue.

[LuckyLuke]

Hi, answering "Can you say categorically that,it is not the c/l that helps to treat those symptoms?" In my experience (diagnosed 2013, under meds since 2016, tremor dominant PD) C/L and B1 works together. B1 empower and improve the dopa. I've used also B1 alone but in my case the best results came combining C/L and B1.

[blogger_7]

Hi, OREOLU, I am non-tremor dominant and although I had symptoms earlier, I finally received my diagnosis two years ago. I have struggled to take CL because if I need to eat a cracker or something with the pill and drink at least 8 oz of water, or I projectile vomit. The neurologists insist I need it. But I never have been able to see any improvement from taking CL

About 1 year after i received the diagnosis, my balance had become so bad I had experienced several falls and resorted to using a cane. I learned about and began taking high dose thiamine 3 months ago. I have been taking 1 a day / 500mg capsule of vitamin B1 as Thiamine HCL & 3 a day / 50mg B1 Thiamine (TTFD) as Allithiamine [=150mg] for the past three months. I no longer feel a need to use a cane, and have not experienced any falls. Although I continue to hold to the banister, when traversing the stairs, I use the stairs with much greater confidence and speed. My husband said he had noticed me stumbling a little more the past few days, so I have upped the HCL to two /500mg capsules of the vitamin B1 per day. I explain my choices in my blog post: silverliningsandparkinsons....

[Gioc in reply to blogger_7]

Very clear and interessino blog, Thank you.😀

[blogger_7 in reply to Gioc]

I appreciate it... that you took time to look.

[Gioc in reply to blogger_7]

hi blogger-7,

Doctor Costantini would have been proud of your results. Nothing made him happier than seeing a patient improve.

“A wonderful thing" he always said to me when those few times (5 or 6) he visited me.

Thanks for sharing your experience with your beautiful blog.

Gio

[OREOLU in reply to blogger_7]

Hi blogger-7, thanks for your extensive reply.

[blogger_7]

You are welcome.