Updating dosing information for New member considering HDT (Posted by Art 12 months ago) . I am a new member and PLEASE HELP!

[Ubin]

Hello, Art and everyone,

I am so glad I bumped into HU recently and read a few 3 years ago posts by members on how this treatment can help so much PWP. I put much interest and hope on HDT and really hope all of your advices can help me.

I am from Malaysia, female, age 55, weight 54kg, Height 166cm. Diagnosed on 26th April 2021. Very sorry I have tell a long story.

PRE-DIAGNOSIS symptoms (since November 2020) :

1. couldn't do fast speeding on stat bike in gym like I used to

2. clumsy when got up/out of chair/car and walked slower

3. Thin upper lip. A bit stiff when smile and smaller mouth movement.

4. Smaller handwriting. Right arm and leg weaker.

5. Mild teeth squeezing/tightening pain , at lower front part - 10 teeth, began to bother me on and off 2 months before diagnosis.

DIGNOSED on 26/4/21 :

The teeth pain. became more and more intense and puzzled 2 dentist I saw. One dentist recommended and got me diagnosed by a neurologist. I was in denial stage for a long while and didn't start any treatment. The teeth was intense enough to drain all my energy everyday and I was so haggard. My family put me into a Japanese Antioxidant Hot Bed Therapy which I went daily for 3 weeks, to lie down for 40mins whereby it improved overall health and well being through use of antioxidant enriched air and heat shock therapy. I regained my health and only mild teeth pain and bit stiff facial.

Due to 2nd covid lock down in my country, therapy centre closed and I finally agreed to seek treatment, 2 types of treatments !, in 3rd week of May

- NEUROLIGIGT : He prescribed me madopar 250, 1/2 am and 1/2pm, told me that it might help alleviate my teeth pain (Not really I later found). BUT, my teeth tightening pain evolved! it can be tightening pain this hour and the next hour changed to burning sensation at tip of the tongue And they rotate as they like. Is this one type of Dytonia?

1 month later, my family took me to a dentist whom is well versed in nerves . This dentist discussed with the neurologist and agreed to prescribe Amitriptyline 1x 25mg daily. Not much of help after 2 months and he might give a stronger one next week I see him.

- ALTERNATIVE PRACTITIONER : Almost the same time I saw an her whom had me on weekly injection of B12 and D and IV drip of vit C, B complex & glutathion plus fish oil, magnesium, gut health pack which consist of NAC, superoxide dismutase, digestive enzymes etc . Immediately after my 1st drip and injections, I could smile from ear to ear, alert and walked at my previous speed. However, helped very little on my teeth pain. She commented it might be caused by the amalgam and after weeks of above mentioned supplements and proper detox,I had 8 of them removed. Its been 2 weeks now, pain is still there, the doctor said be patient. AFTER removal, my drip and injections replaced by oral supplements. I want to highlight here that The B complex has 100mg B1 HCL - 1 in the morning and 1 in the evening.

Note : I did notify. 2 doctors that I am seeking respective treatment.

Of course, I also googled a lot (before HU) and 3 weeks I saw in YouTube , a famous doctor quoted keto +IF, 400mg B2 and 600 mg benfotiamine could help reverse PD, I bought the 250mg benfotiamine while waiting for B2 , getting myself ready to try this claim. I actually also happened to see Dr Constantini and Dr Marco youtube before 2 weeks ago, where I finally bumped into HU and read the 3 years old posts HDL treatments that many HU members took..

You could guess my next move! 4 days ago ,I jumped into the wagon and took 1 pc of 250mg benfotiamine at 11am, all others supplements at 10am.I felt a slight warm sensation on upper body/arms, clearer vision w\that I could read small print and the teeth pain /lip sensation seemed disappeared with just very mild numbness in the mouth. For the1st time after so long, I was painless and felt energetic. The next day I did the same, but this time, I felt warmer and jittery, weak on the right side of my body and teeth pain and sensation returned!. I stopped evening B complex. Yesterday I had my usual medication and supplements, I felt better, bit warm but weak at right side and so are today.

I KNOW I was so stupid and regretted for my mindlessly action. But the teeth pain is such a mysterious and scary nightmare to me. So I plea for your sharings and advice on how I should go about with HDT treatment. * Morning 100mg HCL + 250mg Benfotiamine + Evening 100mg HCL gave up on me)

I am still new to this forum , please forgive me if I broke any protocol here,

Many thanks,

Ubin/.

[Hidden]

"Parkinson’s disease" Vitamin B1 vitamin use instructions : Join my Facebook group Parkinson’s thiamine hcl m.facebook.com/groups/23226...

[Ubin in reply to Hidden]

Thank you so much, Roy. I saw your page earlier and requested to join. I joined again.

[Hidden in reply to Ubin]

I don’t find Ubin in our member rolls.

[Ubin in reply to Hidden]

Roy, I don't get you, filling up my profile doesn't mean I am a member of HU?

[Hidden in reply to Ubin]

Facebook group, Parkinson’s thiamine hcl

[chartist]

Here is a forum link to the information that Dr. Costantini left with this forum as well as dosing information. I should also mention that he did not recommend the use of Benfotiamine for PD.

healthunlocked.com/cure-par...

Art

[Ubin in reply to chartist]

Roy and Art,

From your experiences with so many cases, should I just start with 100mg HCL before lunch and maintaining the morning and evening B complex which has100mg HCL ? Total 300mg?

Ubin

[chartist in reply to Ubin]

Ubin,

The link I sent you goes into significant detail on how Dr. Costantini determined dosing schedules for his patients. I am not a doctor and can not tell people how to dose HDT. On the dosing page, there are also many replies where people explain the dose they are using.

Art

[Bolt_Upright]

Welcome to the group Ubin. Please don't be hesitant to ask questions.

[Ubin in reply to Bolt_Upright]

Thank you Art and Bolt

I understand and I know shouldn't act emotionally, grab on any anybody hoping to get possible help . Even though I do get support from my family but they do not understand why I just can't obediently take conventional medicine and insisted to seek alternative treatment. They think the PD medicine is doing great for me. I tried hard to explain my fear and they think I am exaggerating the situation. But I know alternative treatment is my answer and hope to slow down the progression. Alternative practitioners here are more into treatments for cancer and others but not PD. I will discuss with alternative doctor on my decision to try HDT.

My current problem is my teeth tightening and burning sensation at the tip of my tongue. Since my neurologists and dentists couldn't give me any clue. So could it be a dystonia symptom? Anyone has similar experience?

Also any specific diet ? I am doing gluten free .

Thanks again.

Ubin

[Missy0202 in reply to Ubin]

There are several inexpensive disposable device in a drug store to wear at night for teeth clenching. They helped me when my teeth were extremely sore in the morning when I woke, prior to my diagnoses. My sister suffers from a burning tongue which is NOT related to PD at all. Stress plays a big part in that for her. I had two failed implants prior to my diagnoses and the oral surgeons were stumped. I believe it had something to do with PD and teeth clenching because after I was on meds for a while, I had the implant put back in and I have not had any issues. I think the majority will agree that B1-Thiamine is #1 and then of course there is a plethora of other supplements that help tremendously as well. Lots of good luck in your PD journey. We are all learning together

[Despe]

Hi Ubin!

You will learn a lot about PD from forum members. For any specific questions, enter your question in the right upper corner "Search HealthUnlocked" block and press. You will find answers to your specific question.

I agree with Missy0202 about clenching teeth. It causes a lot of problems and teeth pain. I am not the PwP, my husband is, but I am the one who had the problem, I even lost teeth. My dentist made me a mouth guard which I have been using for many, many years. It alleviated my problem with clenching teeth during the night.

I am not a doctor either, but my husband was Dr. Costantini's patient. He had prescribed B1 HCL injections, 100mg X 2 a week. After Dr. C.'s passing we had to trial different B1 doses until we found the "magic" dose. It takes a lot of trial/error until you find your own magic dose. Talk to your Homeopathic doctor about B1 HCL injections to see if you are a candidate. Bear in mind that not two PwP are alike, and what works for one, it won't work for the other.

Good luck!

[Ubin]

Thanks Missy0202 and Despe, I am beginning to feel calmer with encouragements from all of you. As far as I know, I don't have clenching problem. Teeth pain is my current big concern.