Official Letter to my neurologist - Cure Parkinson's

Cure Parkinson's

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Official Letter to my neurologist

RoyProp profile image
RoyProp

March 27, 2021

Dear Doctor of Neurology,

May I purchase a block of your busy schedule. I will pay two hundred dollars.

At the end of my last appointment, you suggested that you do not know what more you can do for Parkinson's therapy.

It is now my turn and opportunity to share what I have learned about High Dose Thiamine therapy from neurologist Doctor Antonio Costantini. The requirements:

1. Listen to an American radio station interview with Doctors Costantini and Colangeli.

2. Read Doctor Costantini's Report/Abstract, two pages.

3. Read various documentation.

4. View before and after videos of Doctor Costantini's patients.

5. Join the FaceBook group Parkinson's thiamine hcl.

6. Post an invitation requesting comments/reviews from gentle folk that have adopted the High Dose Thiamine therapy.

At the completion I have the expectation that you will have gained understanding of vitamin B1. You will have the tools to save many souls.

Respectfully, your patient

Roy

28 Replies

Good for you, Roy. I had talked to my hubby's neurologist about HB1 and he said if it helps do it, but he didn't support taking vitamins or anything other than RX. He has since moved on and we have a new neurologist. Seeing him in April and will inquire if he heard of HB1.

Good morning. I can't say as I blame you. Is he a Movement Disorder Specialist?At a Seminar before the Pandemic hit (2 years ago), I spoke to my late husband's MDS who does a lot of research what he knew about the high dose Thiamine therapy. He said he heard about it and would look into it further. Unfortunately, our local Chapter hasn't had a seminar since and I haven't had an opportunity to speak with him. We hope to have a virtual one in May and I will pose this question if I am able.

So sorry your doctor is not open to new ideas.

RoyProp profile image
RoyProp in reply to wifeofparky

What is the result? "pose the question" in May

❤️🙏🏼

Great letter Roy he would be wise to listen to you!!

Have there been any studies on HB1 & PD?

RoyProp profile image
RoyProp in reply to jdc3

Report available for viewing or download in FaceBook group.Parkinson’s thiamine hcl

Go to Files, find doc PARK

( don't think your neurologist will take you up on your offer. I sense something missing from your quote from the last appointment

"At the end of my last appointment, you suggested that you do not know what more you can do for Parkinson's therapy" for ME

I can't see in the circumstances where he can't do anything more to help you and you are asking him for help because you're condition is deteriorating, that he will take you up on your offer

It may be worth recapping your posts for the recent past (today is 27th March)

2 days ago Roy you were on 1400mg C/L 4000mg HCL and evasive about what you were on before and when you increased your C/L (and cut back on HDT from 6g to 4g)

1 month ago you were apparently on 700mg and asking whether you could increase

Bumping C/L from 700mg to 1400mg may account for recent reductions in deterioration more than tinkering with HDT

1 month ago - trialling Inbrija

2 months ago - vitamin C increases Carbidopa Levadopa (careful with the Grapefruit juice Roy - particularly if you take blood pressure tablets and/or statins)

3 months ago - dose adjustment . Bit confused but C/L 200CR + ?500 IR

3 months ago B1 dose adjustment

4 months ago Tremor - related to applying for DBS

5 months ago 15g Mucuna Pruriens - 2 posts one observing HDT doesnt help your tremors

5 months ago "Levadopa dose adjustment" - "I stopped b1 and restarted"

6 months ago "I am in the process of adjusting my dose. Brought on by worse symptoms developing. I could not rise from a heavy cushioned recliner."

7months ago "My UPDRS score 37. In my 8th year post DX. Two years earlier it was 27" (so you have progressed 10 UPDRS points in 2 years - not great

When you read the chronology of your posts, you seem to be having a torrid time , and increasing core PD remedies VERY substantially and failing to halt progression of the disease.

This makes your regular claims that HDT halts progression baffling.

ion_ion profile image
ion_ion in reply to WinnieThePoo

I can't speak for Roy but I can speak for myself. The HDT helped and is helping me much more then the C/L prescribed by my MDD. In the first 4 months of the 2017 I saw SIX neuros, of which two were MDD's. Three said I had ET, two were not sure if was PD or something else and only one was sure I had PD.

At that time the motor symptoms were almost nonexistent ( some intermittent low tremor in the RH and RF when under stress) but the non-motors killed me. Brain fog, lack of concentration, depression, anxiety, constipation, insomnia, urinary urgency , low voice, low energy etc. I was at the point to quit the job and everyone at work was asking what's wrong with me. I believe only in science and I did not believe in the supplements, vitamins etc. but in desperation I gave it a try without expecting to help me. And it did. I started with 2g and after a week I felt improvements and after a month all the non-motor were gone. I was not taking any C/L or other PD medication at that time.

Still I did not believe the miracle came from HDT. After 6 months I stopped for 3 months and I fell back into the hole. After other 6 month I went to 1g and later to 0.5 g; at 0.5 , after about 6 month, I was not feeling as good as when I was taking 1 g so I went back to 1g and I feel very well now.

For the tremor , which is true was slowly going up in time (but still mild) I started about 1.5 years ago c/l 100/25 3x/day and now 4x/day. I'm still not 100% convinced is helping with the tremor, maybe partially , let's say less than 50%; if I'm fully relaxed the tremor stops even if I forget to take the c/l pill; if I'm stressed my tremor starts no matter I took the pill or not.

I do not know if HDT stopped the progression in my case but for sure it slowed it and is helping me a lot. After I started it I never felt any more tremor in my RF.

In conclusion I do not need a doctor or somebody else to tell me if the HDT is good or bad for me.

WinnieThePoo profile image
WinnieThePoo in reply to ion_ion

I'm not questioning that HDT can be helpful, nor that it has helped Roy. I'm just observing that on the evidence of his own posts Roy has been struggling recently and quite plainly his PD is getting worse.

WTP, my new MDS (replaced my old one at Northwestern in Chicago and has all of her notes and evaluations and some of the same staff) was surprised at the improvement and lack of progression in my symptoms between 2018 and 2021. The only thing I took during that time was standard nutritional supps that I had already been taking pre-diagnosis, and B1. B1 definitely doesn't cure PD, and for me it doesn't help tremors, but it has helped SO many other things. When I skip more than one day of B1, my urinary urge incontinence and word-recall issues immediately start to reappear.

I'm currently struggling with increased tremors, which is why I tried Sinemet beginning in January and am now trying mucuna, but that's the only symptom that has progressed noticeably since diagnosis. I realize I'm still in the honeymoon phase (just under 3 years), but I'm not just talking about lack of progression. I experienced a reversal of debilitating symptoms compared to 2018. I don't think it's a placebo effect as it's held for 2 1/2 years.

B1 doesn't seem to help everyone, but I would always encourage everyone to at least try it. IMO, even a 25% reduction in symptoms would make it worthwhile as B1 is safe, simple, and affordable. I'm just so glad I found it early on. The benefits didn't start for almost 2 months, and they peaked around the 7-8 month mark, but they've made my life liveable again.

😊

Roy is definitely a B1 evangelist, and maybe even a zealot lol, but I'm grateful for that. Re: your comments about his posts, I've noticed the same things. It seems like he's now really struggling with tremor, as I am (not severe, but it's bothering me now, which wasn't the case prior to this year), and I don't know if there's really an answer for that... maybe FUS-PTT eventually.

I am happy for you. Yes I am zealot. I was disabled by Parkinson's. Going down hill. Doctor Costantini is a saint. I wanted and still today "fight" to reach Parkinson's people and their caregivers. I regained most of my health and could do simple chores on my own without help. I created the FaceBook group to honor Doctor Costantini as much as I wanted to reach out.

Of recent, I developed new symptoms that B1 for some reason was not taking care of. But of course, that is why Dr. Costantini instructs us the requirement that we MUST take c/L together with our B1. ( to be continued ).

Yes, Roy, I understand! I appreciate your work immensely and hope that you find more answers!

I recommend your fb group to everyone with PD.

RoyProp profile image
RoyProp in reply to RoyProp

Doctor Costantini said B1 is not a cure. If not a cure then we would expect an ongoing battle to control Parkinson's. It is not fair to the memory of Dr. Costantini to denigrate B1 because one doesn't see results that the rude person lays on the HDT.

I found myself: difficulty rising up from a recliner, a toilet seat, difficult/unable to move my feet into and under the bed covers. To close this explanation quickly, my neurologist did not want to prescribe over 700mg daily of c/l. As I had on two separate occasions tested higher dose. I no longer had difficulties. My neurologist learned from my doctor that I had asked if he would prescribe c/l. I had also made appointment with a MDS. In the meantime I wrote a message to my neurologist explaining my argument in favor of 1400mg a day of c/l. She has come to agreement.

Doctor Fahn, a international recognized neurologist stated that generally his limit is 2000mg daily. A forum member told me Dr. Fahn is their doctor and he told them he can go higher yet.

Mayo Clinic indicates there is no specified upper limit of dosing with carbidopa levodopa.

I just entered the 5th year from diagnosis and I'm in very good shape; even the tremor is not so bad if I'm relaxed.

Ghmac profile image
Ghmac in reply to 1LittleWillow

How much B1 are you taking? Thank you for your response

Since I have similar problems, Roy Prop, I sure can empathize with how you feel. I have been taking B-1, along with C/L and various other vitamins, for several years! It seems like it is helping. I have times where I have trouble getting out of a chair, and have a lift chair that helps that. I feel that, perhaps, progression has slowed down, somewhat, with me, because of exercising faithfully, B-1 supplementation, other vitamins, etc. it still baffles me, though, when I have days when I do the same routine, and yet I am terribly stiff, and debilitated, and getting around, is really hard, for me! So, having PD can, of course, be very frustrating! It looks like you have a reasonable neurologist, who will listen to you, and can help you! I am not so lucky! I have a specialist/neurologist, who is somewhat blasé, and dislikes taking an aggressive approach, to help me, as I try to get through each day. He doesn’t particularly like complaining, and brushes off some of my concerns, at times! Basically, I am not one to complain, unless if something is really bothering me. It is not easy to change Docs where I live, so, I don’t feel that I have much support, concerning answers to questions I have about some symptoms, and how can I get help, to find a way to better cope, with some PD symptoms, and problems. I must say, this forum has helped me a lot! Communicating with others, who have to daily live, with the “ curse “ of having PD, is where I get my best advice, support, and understanding about the many manifestations PD can have, in one’s life! Thanks for your contributions, RoyProp!

RoyProp profile image
RoyProp in reply to ddmagee1

"I have trouble getting out o f a chair" I have solved that problem. Here my neurologist recommended inbrija. It cost me 400$ and as I suspected was worthless. The last appointment, doc said there was nothing more she could do.

I now had to be my own advocatr. The doc would not increase my levodopa above 700mg a day. At this time I was already experienced taking, without doc, taking 1400mg a day.

I put pressure on her and now she says before raising my dose she wants me to come into her office.

Back to inbrija. The levodopa that you inhale. A symptom, I could not move my legs into bed. My wife had to help. During the night, she would have to help again as I came back from the toilet. Oh, and I had trouble rising off the toilet or the recliner. I mentioned those symptoms and she pressed inbrija.

NOW, I read the product description. It was not going to help in the slightest. Well, to close, I take 1400mg a day of levodopa. I have no problem taking care of self and symptoms are gone. Look and see if more levodopa is all you really need.

ddmagee1 profile image
ddmagee1 in reply to RoyProp

RoyProp, Thanks!! Yes, I’ve been upping my c/l, takings whole tablet, instead of half, and I can see it starting to help! I’ve been very impressed with Dr. C’s reports on his studies, and seeing how he really cared, about helping his patients! It’s sad that he became so seriously ill! Thanks again for your support, and helping me! You are appreciated, RoyProp! Doug

RoyProp profile image
RoyProp in reply to ddmagee1

Good night dd. Now I have to go and occupy myself during another sleepless night.

st8farm profile image
st8farm in reply to RoyProp

Hi Roy. Larry Mallory in Yuma here. As you know, I am 5-6 years into this PK lifestyle. I have appreciated your input very much, I crashed my Facebook account on purpose, so the Health Unlocked site is the only one I follow anymore. My right hand tremor is the only complain I have today, as the B1 is seemingly hanging in there on the other 8 markers I formally had. I read you had sleeping problems. My daughter in law is a nurse that has /is working in two large hospital domains as a RN. The two are Saint Josephs in Phoenix and the new one in Salt Lake City. Nurses in both facilities turned her onto to "CALM" , an anti-stress drink mix that tastes la little like citrus flavored. It is a relatively cheap form of magnesium drink powder that helps me with sleep issues, cramping, and anxiety. When I say helps, I mean eliminates the three issues. I get it from the same people I get the B1 from online. Hope that helps.

Kattripp profile image
Kattripp in reply to st8farm

CALM also comes in gummies, very tasty. The magnesium citrate is relaxing and sleep promoting plus all but totally eliminated leg cramps for my husband! Many PWP are low in magnesium at a cellular level, despite blood lab values being “normal”.

I have bought from Vitacost but Amazon offered a better cost per gummy ( larger size). Good luck!

ddmagee1 profile image
ddmagee1 in reply to RoyProp

Tell me about it! I have nights like that, too! Good luck!

LindaP50 profile image
LindaP50 in reply to RoyProp

Roy, so sorry you have sleepless nights.

Have you tried Melatonin? Or, I see others have recommended "Calm."

As I'm mentioned a few times, my husband takes CBD oil for mild pain. Takes before he goes to bed, too. States it helps with pain and to relax his muscles. Highly recommended to him a few years ago by a Visiting Nurse who said many of her clients with PD take CBD oil. For them it helps with tremors (my husband has PD without tremors).

We can get the CBD oil at local stores, however, husband likes this particular brand - states it works best for him. Head and heal explains how to start using and at what dosage. Organic - from farm.

headandheal.com/

Well said..I do wonder how these people are allowed to practise

I dont respond to C/L, nor to agonists so I am doomed...

RoyProp profile image
RoyProp in reply to JayPwP

I did not respond. After upping the dose it was a complete 180

Roy, I'm still trying to understand what benefit you are getting from b1?I've re read your comments. Are you saying that it has improved your bradykensia and rigidity but not tremor and your c/l increase was your attempt to control tremor?

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