Specialists

[M-o-ggy]

Had my follow up appointment which should have been st 6 months but turned out to be 9 months. Asked if I could be tested for B6 deficiencies. Reffered me to NICE guidance which says that Vit/ mineral supplements do not have any effect on PD

So disappointed with her reply. I asked to be tested not to have a prescription

Then tells me that the genetic test came back normal but for the first time says that it is one of the genetic tests. Previous to this she has said that she wanted to test for a genetic link which I took to mean the one and only genetic link. It seems that the physical state of my left eye indicated a genetic disposition.

Did not want to know about Black cumin oil or mushroom powder

Disappointed

She then upped my meds’ because I am under medicated.

[Hidden]

NICE but I am placing my faith in B1. I hope the Italian doctor is right and that his videos of before and after patients was factual.

[M-o-ggy in reply to Hidden]

Hi there. I am fairly new to this site Should I be investigating B1

[Hidden in reply to M-o-ggy]

search my Posts (from my profile page).

B1 Thiamine therapy

Doctor Costantini remembers that helping his very first patient, afflicted by an acute ulcerative, set him on the path towards countering Parkinson’s disease. He advised her to inject herself with two mg of Thiamine per week. “In the first 15 days of the therapy the patient was relieved of exhaustion, irritability, pain in her feet and calves”– says doctor Costantini- “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine.An important detail”,adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

ultimaedizione.eu/costantin...

[silvestrov in reply to Hidden]

I recently discovered a lipophilic form of thiamine: Lipothiamine

This form of thiamine is enteric coated so it will be delivered directly to the small intestine for maximum absorption. When I run out of conventional thiamine I will give it a try.

pureformulas.com/lipothiami...

[answerseeker in reply to silvestrov]

My husband with PD started with Ecological Formulas ALLITHIAMINE 50 mg. He has also been on Mannitol for about 7 months. I confess I am guilty of adding one more thing when it seems to be safe, seems promising and particularly in both these not very costly. People we know keep on commenting on how happy they are to see how much better he is doing.

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/978282

[glenandgerry]

The response from your neurologist is just so typical here in the UK. My husband has his appointment with a new Neuro at our local hospital (they keep moving them around) next month and we plan to ask for various vitamin deficiency tests but I'm not too hopeful, especially after reading your post!

He's managed to cut his Sinemet intake right down and I'm sure it's because of the supplements but without being tested for deficiencies we are kinda 'stabbing in the dark'

[M-o-ggy in reply to glenandgerry]

At least you will be better prepared than I was. My doctor tested me for Vit D which turned out to be dangerously low. She said that she can’t refer for B6 and that I should ask the specialist.

[honeycombe3 in reply to M-o-ggy]

To Moggy & glenandgerry,

I am a 13 year veteran of PD, age 69, female from UK.

Although NICE can 'recommend' certain meds or treatments which is usually taken as an instruction, your GP or consultant can make an alternative arrangement with a pharmacist if he/she believes it is appropriate for you. As an example: generics are 'recommended' by NICE in all cases BUT the 2 generic forms of Ropinirole I was prescribed left me almost completely paralysed for 4 days. When my blood tests came back I had no Ropinirole in my system. My consultant asked the GP to prescribe Requip by name & I made a gradual recovery.

Incidentally I get blood tox screens every 3 months as I also have heart failure so I am prescribed 17 different meds each day. I have been tested for

vitamin deficiency in the past but not been found wanting. When I did have B vitamin years ago it made no difference.

[tommybigt]

Hi I'm tommy

I was searching the I'm sure it was Parkinson's site. That b6. B12. And folic acid. Was good for the memory. I'll search for the thread and post it here m o g g y.

[tommybigt in reply to tommybigt]

I'm sorry i put folic acid. Instead of. Folate

[tommybigt]

forum.parkinson.org/topic/1...

good reading m-o-g-g-y hope it helps

[RS313]

I take Emergency C packet everyday and it helps tremendously with pain and stiffness>i also feel better all around! It has Vit C B vitamins and electrolytes.I was skeptical at first to try but it has really made a difference and i even stopped it for a few days to see what happened and the pain came back.It is now a daily regiment for me.

[Stebenjoe in reply to RS313]

I do the same. I've been out for a few days and this morning I'm pretty miserable. I'll be grabbing some from Walgreens as soon as I can get myself moving this morning.

[hanifab23 in reply to RS313]

How many do you take

[RS313 in reply to hanifab23]

one packet a day

[M-o-ggy]

Where do I buy emergency C

[Stebenjoe in reply to M-o-ggy]

We have it in every drug store and grocery store where I live (Mississippi).

It comes in a box of packets that you mix with a glass of water.

[RS313 in reply to M-o-ggy]

yes you can buy it any drug store in US

[Prayingforacure in reply to M-o-ggy]

At our Costco it sells emergency C

[glenandgerry in reply to M-o-ggy]

Not so easy to obtain in the UK. It is available on Amazon but the UK version is not as good as the US version. I was ordering online from the US but you have to make sure the value of your order is under £15 otherwise you have to pay the import charges. This means I could only order 1 box of 30 sachets at a time so I stopped buying a few months ago......maybe time to start getting it for hubby again 😊

[M-o-ggy in reply to glenandgerry]

Would you be willing to share the US source you have used ?

Would also appreciate knowing what the difference is between the two versions

[glenandgerry in reply to M-o-ggy]

Sure, I've purchased from iHerb & Vitacost The US product is made by Alacer. From memory, the differences are it has less additives + more B vitamins & electrolytes but to check, you need to locate both products online and compare ingredients.

[Prayingforacure]

I requested my husband be tested upon his first office visit to a new physician , was to my surprise he was very much into finding out vitamin deficiencies. Which my husband was. He advised That the best multi vitamin is liquid, the body is able to absorb it right away,he was real low in vitamin D-3 he got the drops. I noticed it was the best thing I did in getting this Dr. I purchased a vita -mixer did lot of juicing of fresh veggies and fruits, even grew our own wheat grass, it all really was beneficial for him. I wish more physicians were into benefit from nutrition instead of over-ready to write a prescription.