Email sent to MJFF

[Gcf51]

*** I ended up with High Blood Pressure taking TTFD. I no longer take TTFD. Based on my experience, I would not recommend TTFD. ***

If I can convince my MS (xxxxxx, professor at Augusta University), Would you support research to develop a "safe treatment" for Parkinson's and possible addition of a small portion of B1 as TTDF to eliminate Parkinson's in the developed world.

My experience (my HU links will take you to near target should start with (+* 6/12 Day 25 of taking TTDF+): healthunlocked.com/cure-par...

I have sent a message to TeamFox which may have not have been best contact.

add:

A lot of High Dose B1ers don't like TTDF. In my opinion they figured they were taking 0.5-3000 g of B1 as HCL and figured they would pop a handful of TTDF. I forwarded to my MS and plan to call office soon and leave her a message,

The only symptoms of PD, I am currently having is tremor when excited which is too often.

Maybe I should take a mood stabilizer pill for mania, but I kind of like mania.

embarrassed - The correct abbreviation is TTFD

[park_bear]

MJFF has not been receptive to high-dose thiamine treatment.

[Gcf51 in reply to park_bear]

I am not taking high dose, This would be a much lower dose TTDF. Maybe even as low as DRA of B1.

[park_bear in reply to Gcf51]

Let me put it this way: MJFF has not been receptive to the use of thiamine for treatment of Parkinson's.

Nothing wrong with encouraging them to change their view, but do not hold your breath waiting for response.

[MarionP in reply to Gcf51]

Fox foundation has dismissed thiamine treatment, period. They are not interested.

Better off to give up saving the world and deal with your own situation.

[Gcf51 in reply to MarionP]

I have had no response from them.

[Smittybear7]

Let me know if you find something to stop the tremor. I'm having a real tough day with them. Thanks

[Gcf51 in reply to Smittybear7]

I am not a doctor (and personal dr. is considered a bad doctor) don't do what I did and take 50mg of TTDF for 10 days and overdose. As for me somewhere during that 10days period my tremor was at an acceptable level (my PD symptoms were backed to levels of 10yr ago.)

[Isthistheone in reply to Smittybear7]

Have you looked into Focused Ultrasound? FDA approved for tremor and dyskenesia.

[Smittybear7 in reply to Isthistheone]

What are the side effects?

[Isthistheone in reply to Smittybear7]

Focused Ultrasound has been available in Switzerland for 4+ years. This is a tested and proven treatment for PWP WHO ARE TREMOR DOMINATE.. This is not on my radar presenly. My Parkinson's sub set is gait and balance. Things are a changing. PWP should take note - the FDA has approved this break through procedure. The FDA even added their approval for dyskenesia. Focused ultrasound technology is in its infancy. There many medical conditions besides Parkinson's, being successfully treated with FUS.

[Smittybear7 in reply to Isthistheone]

Is focused ultrasound available in the United States? Any side effects? Thanks for your help.

[Isthistheone in reply to Smittybear7]

I am aware of one located at U of M in Baltimore. Google focused ultrasound Foundation. Knowledge is power.. Search here on health unlocked. I know one person here who had the procedure. See MBAnderson comments. Definitely one of the top three in knowledge and experience on HU.

[Smittybear7 in reply to Isthistheone]

Thanks for your help.Good luck to you!

[Gcf51 in reply to Isthistheone]

Thinking of investigating and asking MS about.

[Gcf51]

Based on 3day total consumed and results of my blood test, 13.3mg would have brought me up to mid range of normal test results, maybe a few days of 11.1mg will be enough for me,

[MBAnderson]

HU people have tried this to no avail.

[JCRO in reply to MBAnderson]

You mean try to get MJFF to pay for and back a B1 trial? That’s my understanding… people have tried and failed there.

[Gcf51]

JCRO Not high dose B1

Much lower dose B1 as TTDF (I am on day 2 of 11.1mg B1). self filled caps stuff inside tastes awful,

Haven't heard anything yet from MJFF or my MS that I forwarded email to and left message for her.

[JCRO in reply to Gcf51]

I meant any sort of B1 at all. I’ve heard MJFF have been approached and just passed on it.

[Gcf51]

Can't hurt to ask....

[JCRO in reply to Gcf51]

I’ve asked my ND. She certainly advised MJFF in the past. Maybe she can open a door.

[MBAnderson in reply to Gcf51]

It might.

Some HU people might want to ask them to look into something else in the future. Since they have already looked at the (B1) issue and made up their mind not to do anything, we risk teaching them to become dismissive of suggestions from HU.

If some else comes along in a few months and discovers B1, should they be encouraged to go to MJFF again? I feel repeatedly asking them is counter productive.

[Gcf51]

MBAnderson My reply to those that have made up their minds, Positive or Negative about B1; TTDF is not your typical B1, It ready enters your blood cells and ready carried across the BBB...

[MBAnderson in reply to Gcf51]

suit yourself

"...TTDF is not your typical B1..." but it is B1

[Gcf51 in reply to MBAnderson]

I never said, TTDF isn't a form if B1.

[WinnieThePoo]

I think the issue is that it doesn't need any research to free the world from Parkinson’s disease. Anyone with PD who doesn't want it any more, can fill their boots right now, today, and copy gcf1 and start ridding the world of PD. No research required

[Gcf51 in reply to WinnieThePoo]

I would love to rid the world of neurological diseases, but do your research consult your doctor (Please).

[Gcf51]

Maybe, safe is: (needs to be researched) I am not a doctor consult your's!!!!

a) Start with recommended dose of TTDF.

b) If you feel anxiety, jittery, mania, etc. take a break!!!

c) After a reasonable period of time (1 week maybe very iffy); a) increase your dose b) start back at a reduced dose.

d) Then and only then try reducing other B1's (after thought: Those taking high dose B1 may need to reduce dose when/before starting TTDF)

e) Then try reducing other meds (supplements) one at a time.

Be patient your PD didn't progress over night, don't expect relief of your symptoms to happen over night.

[kevowpd]

The abbreviation is actually 'TTFD'.

[Gcf51]

Thanks, as in funny Disulfur , excess by dyslexia please. I will try to edit but direr not change A main post because any link might be broken on HU

[Gcf51]

embarrassed - The correct abbreviation is TTFD