Flops and flips

Today, seems to be the best day I have experienced for quite some time? I am encouraged. I introduced you to the concept of high dose Thiamine on Jan 31st. Having time to read a lot of Dr. Costanteni’s … when I obtained my first bottle, I jumped on board… (a little too aggressively). Therefor when I became more unstable, I had to back off! I also began to feel incredibly weary… the opposite of what I was hoping for. I recognized it as something foreseeable.. a healing crisis.

As I listened to Ellliot. (IN the clip which follows)… I wondered “who is this young whippersnapper, who has done this research?” I didn’t see what his qualifications were but when he addressed some of my concerns… and things began to make more sense to me, I felt enabled to make some decisions,

  • Since I am experiencing more energy now, I am going to continue to take the less expensive Vit B1 (as Thiamin HCL).
  • But I am also going to begin to supplement with a lower dose of a TTFD thiamine which is able to pass the bbb (blood brain barrier).
  • I’m going to TRY to be patient with my expectations on timing: . The whippersnapper said:
    • As the levels have dropped in the brain the enzymes have deregulated down,
    • therefore the transporters have also deregulated down
    • and when the message is sent to the body that the vitamin is available, it may take up to a year for the enzymes and transporters to get re regulated to enable absorption.

Dr. Costantini indicates within three months a person should be able to document improvement. He recommends having someone video tape you before you begin the protocol… capturing not only the pull test, but other manifestations such as walking (shuffling) arm swing, facial mask, talking, etc.

And periodically making updated recordings. “It is surprising how quickly people forget how bad they had gotten.”

Another stone to turn over

When I run across something I haven’t heard about before I just have to follow the threads. The discussion was on how much carb/Levo a variety of pwp took, timing and side effects they had experienced.

Deb posted: ” I mostly only take c/l when I leave the house to exercise, run errands or socialize. At home without c/l I am a bit stiff and slower moving but still functional. If I take c/l for several days I get dystonia. I also take high dose thiamine which has made a huge difference in reducing almost all of my symptoms. https://stopparkinson.org/en/table-of-content/

When I clicked on the link… stopparkinson…Right up front I saw: Articles should not be downloaded and used for any purpose without the written agreement of the editor.

So, I just want to recommend you click on the link! Thiamine is in the B complex we take… but that provides only 25 mg once a day! That is a far cry from what they propose! I messaged to Deb, to ask her about her daily consumption.

Deb responded, “I use 500 mg -vitamin-b-1 . I take 2 at breakfast and 2 at lunch (2000 mg total). I was really struggling with balance and tremors but high dose thiamine gave me my life back.”

We exchanged emails… she typed, in part… “I hope the b1 helps you. It doesn’t work for everyone, but for me, it was life changing. I was diagnosed 4 yrs ago at 58. ….. A year ago I could not walk without a walker and just taking a shower would wipe me out for the day. I could barely move my body and needed help dressing. At my last appointment with my neurologist in Dec 2018, I was in a wheelchair and could barely stand up. They told me my only option was DBS surgery.”

“Just about 1 year ago, I stumbled on the information about high dose thiamine. Within 3 days of starting, my balanced returned and I no longer needed the walker. Within 3 weeks I was driving and going to yoga classes. It was quite an amazing change!”

“I have spent the whole year regaining my health and strength. I exercise every single day …… Some days I almost feel normal:-)”

SO… b1 is water soluble, so it doesn’t build up in the body or become toxic. A person can’t over dose on it. It is a vitamin, so it isn’t net work marketed. At .10 cents per capsule, I figure ‘nothing ventured, nothing gained.

I will keep y’all informed.. when the capsules arrive, the protocol I follow and ANY RESULTS… positive or negative.