I am my grandmother's primary care taker. I recently learned about HDT and decided to try it on her. Every morning I videotape her eating, which I will use to see if her condition gets better or worse over time.
She is 87, having parkinson's for at least 25 years. In the last year her on-state dyskinesia became cognitively disabling. The severity seems to vary with the air pressure, on rare occasions when a thunderstorm comes and the air pressure is 1015mb she can feed herself without assistance in her on-state.
I started her on 200mg/day TTFD on July 6th. After 5 days it seemed like her physical dyskinesia was more jerky, I tried reducing her levodopa dosage from 100mg to 50mg. Surprisingly, she seems to be lasting 2 hours on 50mg levodopa now - (last year, I took a mental note that 100mg levodopa would last her about 2 hours and 15 minutes).
Her condition varies by the day, so maybe this could be a placebo effect or the weather cooperating, etc. But it seems like for the past week I have only been giving her 50mg levodopa doses and it lasts long enough for her to use the bathroom, eat, and go on the stairs a few times. I seem to recall last year when I was playing with her levodopa doses 50mg just didn't last long enough to use it as a go-to dose. (Maybe 50mg from half the 125-Madopar dissolvable pill that I currently use is better absorbed than 50mg from the whole 62.5-Madopar dissolvable pill - idk).
Yesterday on July 16th I raised her TTFD dose to 300mg/day now that the magnesium citrate powder I ordered has arrived. I heard the theraputic dose for TTFD is between 200-500mg per day.
I know to start noticing a difference in symptoms should take on the order of 3 months (that is, if she is going to respond to HDT), so I'm not sure what dosage within this interval I should be targeting until then. Currently I feel like keeping 300mg/day until 3 months passes, or any changes in symptoms, because I have not so far heard of anyone going above 300mg/day.
I ordered some supplements, including glycine + NAC to assist with glutathione production, and creatine, carnitine, r alpha lipoic acid and taurine.
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philipmurray
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It took me 10 days to overdosed taking 50mg of TTFD day. On TTFD I seemed to be on a never ending cycle of overdosing on yet another lower dose (last 17mg). I am now taking 1100mg Thiamine HCL.
I am interested in knowing if anybody has had success with TTFD. Not saying it won't work, but all Dap1948 says about it in her book is basically no success stories and no advice can be given at the time.
Today is her third day of the 300mg/day TTFD dose.
This morning my mom gave her 100mg levodopa rather than the 50mg I have been giving her over the last week. She got levodopa hallucinations afterwards.
My mom gave her 100mg levodopa again later in afternoon, and she got very restless, constantly tossing and turning in bed, having jerking motions, and falling out of bed on one occasion. (This is why I lowered her levodopa dose earlier in the month).
However, in the evening I gave her 50mg levodopa, and once she got into her ON state she started became very restless again. This was unexpected, because I was attributing the restlessness to her 100mg levodopa doses, but the 50mg dose made her become restless again.
She has had restless days in the past, and it's possible the earlier 100mg levodopa dose is contributing to her restlessness on this last 50mg levodopa dose. But I guess I also have to consider the possibility that the TTFD is giving her this restlessness.
Tomorrow morning when I give her the 50mg levodopa, I will observe if she is restless again, and if so, I might try giving her say ~35mg levodopa for her next dose and see if I can get a brief window of a calm ON state.
If she calm tomorrow, that would likely mean the 100mg levodopa dose caused her to become restless today. However, if she is restless tomorrow, it may indicate the TTFD dose is affecting her. The weather is also shifting from sunny to thunderstorms at a rapid pace, which may also be affecting her.
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Tomorrow I will delay giving her the TTFD until she gets into her ON state for a bit. If she is back to normal in her ON state then I will likely continue the 300mg dose. Otherwise I might consider going back to 200mg.
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On another note, my mom claimed to have given her 100mg levodopa about a half hour before I walked in the room at 10:15 (which would mean like 9:45), and she went into an off state around 12:45. By this estimate, she lasted ~3 hours on a 100mg levodopa dose. I seem to recall last year she would last at most 2:30 hr:min on a 100mg levodopa dose. It's still outside the window of certainty, but in the future if it turned out she could last 3:15 on a 100mg dose or 2:15 on a 50mg dose, that would definitely indicate that the levodopa is lasting longer than it used to.
She was still agitated and restless this morning, even in her OFF state. I use a bottle to push water into her mouth to carry the levodopa down, I usually do this for 15 seconds. Today when I stopped with the bottle, she grabbed the bottle from me and drank the whole bottle herself. I haven't seen her do this in her off state in a very long time.
The air pressure is 1011mb right now, the lowest its been in a very long time, so I assume this is causing her to be agitated/restless.
She was having hallucinations from her morning 50mg levodopa dose. She was restless when eating, but she could take the spoon to her mouth if I put her hand on the spoon, and could drink from her coffee cup by herself.
I asked her if she had any pain, and she pointed to the side of her chest, I assume this is where she landed yesterday after falling out of bed (Today I have pillows ready to catch her fall but didn't yesterday). I decided to not give her TTFD today, until the weather normalizes, she looks calmer, and she doesn't indicate she has any pain.
Thanks for the post. I take most of the things you mentioned, minus the Alpha Lipoic acid if I have that right. That does seem like a lot of TTFD. Right now I'm taking a mix of 300mg benfo and 300 TTFD spread out over about 2 weeks, Sort of sublingually. Alternating days with 50mg Th HCl. I tried cutting out the TTFD/Benfo for week or so and kind of slumped.
If you're after more Glycine, there's MagGlycinate, but maybe you're using the Citrate for the other reasons. I have felt noticeably better when taking Glutathione sublingually. I ran out and got some "liposomal" glutathione from Piping Rock that turned out to be (apparently) just glutathione powder mixed with some oil. It didn't really work for the sublingual route. Seems like you know that swallowing Glutathione is basically wasting it. It's really slow going... maybe 30 mg at a time under my tongue and letting it soak in.
My supplements arrived today, it almost feels like Christmas. I used iherb.com since they ship to Poland and the prices are good.
I heard of magnesium glycinate (I think it might be one of the more bioavailable forms) but it was more cost effective to get the citrate powder and glycine separately. I also heard of magnesium l-threontate, which is better for BBB crossing, I might get that sometime later.
I didn't even know sublingual glutathione was a thing. Swanson had a glutathione precursor complex that had TMGlycine + NAC + glutathione + carnitine + RALA + others, but they were in low doses so I just ended up getting the glycine + NAC + carnitine + RALA separately.
The only supplement I got in the sublingual form was methyl B12. Apparently some people don't absorb dietary B12 well, and it was more convenient to order a sublingual B12 than to carry my grandmother to a center that would perform a B12 test.
I was interested in getting a sublingual B1 as Daphne mentioned it. The Superior Source brand has a sublingual 100mg thiamine-mononitrate supplement, but I would rather get the HCL form.
There is also a ton of variations in the activated B complexes, I ended up getting the Swanson Active B complex as its B1 form is Benfotiamine, and it has a greater B2 to B3/B6 ratio which I think might be better since B2 is safer in higher doses than B3/6/9.
I avoid "sublingual" forms. I just use the regular pills and allow them all the time they want to dissolve under my tongue. Sublingual formulations often have xylitol or such that cause them to explode into pools of saliva I can't not swallow. I went through that with Methyl b-12 and learned my lesson.
For glutathione, I open the capsule and just dump a tiny amount under my tongue and let it go. Many repetitions. Not ideal for Grandma, maybe.
The symptoms you describe would appear to be an excess of B1.
IMO simplicity in the case of thiamine has its power. In other words, I prefer not change the treatment with b1 because the case changes , obviously it changes! ( with reference to B1 only)
The simple thing I do is that in the presence of symptoms of excessive b1 I suspend for a few days until the body normalizes ( it could take one week or more) and then resume at the same dose of b1 as before and so on until the next overdose symptoms.
note: TTFD is a rather complex and in my opinion quite good synthetic form of alllithiamine but given its complexity it is not my first choice. I prefer the hcl form, pill or injections.
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