Neuropathy and suspected cause

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This topic contains 8 replies, has 4 voices, and was last updated by  Anonymous 6 years, 3 months ago.

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  • #3586

    Anonymous

    I started taking the DCA in December for fNHL, Stage 3, at a dosage level of 10 MG per KG (taken half amount twice each day) and continued into March. That was right at three months. On March 10, I thought I was getting some response, and increased the dosage level to 15, and within 36 hours experienced what I would describe as severe neuropathy. I immediately stopped taking it, again, until early this week, when I started back at a dosage level of 10.

    The neuropathy had reversed to a point that was, I think, better than 90%, and to a level I think I can live with, if there is no further reduction. To describe, the neuropathy turned my lower calves and feet significantly numb and affected both my strength, gait and balance.

    I think there are a couple of factors that led to this undesirable response. The first is that I probably was not taking enough vitamin B1, and that was the only supplement I was taking for nerve protection.

    Also, after some analytical questioning, I think the recommendation for dosing five days on and two days off is not sufficient. If your pharmacodynamics does not clear the DCA from your system, you will tend to build week by week. The half-life of DCA is advertised to be approximately 24 hours. Even at this rate, over an extended period, you would be starting each new week with blood levels as much as 10 to 12% higher than that of the week before. I think this is the main thing that happened to me. Therefore, I’m starting back with a dosing protocol of two weeks on and one week off – what Medicor supposedly uses in their treatments.

    One main thing I have learned from this, is just how dangerous self-medicating can be. DCA is not a benign drug. If it is neurotoxic, then it is cytotoxic. Even with all the information available on the DCA site, I still had unexpected side affects..

    One other thing I’m doing with this new round is to take additional supplements, and to dissolve them in 1 L of my cold, green tea. The lab animals were dosed in this manner, and perhaps taking it dissolved changes the way it works. Much is recommended about protecting the chemical from moisture, but perhaps the hydrated form is the better way to take it.

    The supplements I’m taking twice a day along with the DCA are B1 at 250 mg;  Benfotiamine at 150 mg; and R-ALA at 200 mg.

    #4650

    Anonymous

    Well, egg on my face!

    You will start off the new week with a residual dosage level, but that higher level will continue to drop, until you finish the week at the dosage you’re taking. However, I intend to continue with the “two-weeks-on, one-week-off” routine.

    Sorry if I confused anyone other than myself!

    #4652

    Anonymous

    I have had a very similar experience:  Not enough time off.  Too little R-ALA/B-1. P/N

    AND,  I miscalculated my own weight.  My PN is motor and getting a better.  I'm easing back into DCA at the correct 10mg for my weight and trying the 5/2 ratio of  treatment for a bit.  If PN keeps trending better, I'll take two weeks off the next time I'm scheduled for two days.  Or maybe the time after that, because of a scheduled CBC in two weeks.  Want it to look better than the last one.

    My physician told me exactly what you posted – DCA is not cleared from your system at two days.  In fact, it's almost like taking no time off at all.  I was doing so well on my regimen (and it was killing my nasty white cells) that I thought I was good to go with this plan.  I took very little time off.  Now, my goal is to reach the Medicor guideline.  Doctor/bro. felt this made more sense.

    Footnote:  My motor PM causes fisciculations (muscle twitches) body-wide but primarily in the calves;  muscle tightness;  a one-time gate issue due to tightness; and pain similar to fibromyalgia.  All over the map.  

    #4655

    Anonymous

    Well gents, in the dozen patients that I know that took DCA at 10  mg/kg for 5 days on and 2 off, there has been minimal  peripheral neuropathy (PN).  Some of these patients have used DCA for years.  In the best of all worlds, we would do DCA serum levels. 

    It would be hard for me to believe that PN occurred within 36 hours of starting it. 

    Here is where this forum could be collecting data on DCA dosing, scheduling, and the frequency and severity of PN, along with what adjunctive measures were used. 

    Just this week, a paper was published in BioMed Central (BMC) on major reduction in PN in those women taking  omega-3 fatty acids supplements while receiving Taxol chemotherapy.  Maybe that too should be explored. 

    Stephen Strum, MD

    #4656

    Anonymous

    Great idea to collect data on dosing, side effects, and their prevention right here.  I guess I'm one of a few whose perpheral neuropathy was motor.   Except for right at the end of week nine, as DCA levels peaked, my PN would be clasified as moderate (I suppose).

    #4654

    Anonymous

    Tnx, Bentley; good luck!

    To Dr. Strum’s comment, I ordered capsules containing 375 mg each, which, at two per day, was to give me the dosage level of 10, and took that level, 5/2, for three months. I ordered, again, and was told that they could send me some with 400 mg. Pls see my recent post regarding a precision scale, in which I found a wide variance in the actual content of those capsules.

    On a Monday, after my normal two-day break, I wanted to up the dosage level to about 15, and began to take three capsules per day, morning, afternoon and night–never less-frequently than six hours. So, lets say I took three caps that had closer to 500 mg, and I started that week with a blood-level of, say, three mg, I could have wound up with a blood-level of around 20, I think. Anyway, I’ve opened all those caps and am weighing my own, now.

    My Oncologist knows what I’m up to, and while not taking any responsibility, will help if I run into any TLS. Fortunately, I don’t have much tumor-load.

    We have a great advantage having an MD with experience in Ca treatment taking an interest in this site. I intend to send him my case details, as he offered, when things progress for me.

    #4657

    Anonymous

    My wife is in her first month on DCA.

    50kg * 10mg/kg = 500mg daily dose.

    We use electronic scale with 0.01g accuracy.  I calibrate it regularly.

    We dissolve 500mg in 600cc of water.  She drinks it 3 times a day after meals.

    Here's her schedule so far:

    week 1: 7 days on

    week 2: 7 days off

    We decided to switch to 5/2 here:

    week 3: 5 days on, 2 days off

    week 4: 3 days so far (Mon-Wed)

    She complained about numb calves yesterday and today.  Sounds like a mild PN.  I told her to stop DCA immediately.

    I didn't expect PN so soon.  She hasn't been taking B1 or any other supplements.

    #4658

    Anonymous

    Just a quick follow up to my previous message:

    My wife didn't comply with my request to stop DCA.  She finished her daily dose yesterday (Wed) and mixed another one today (Thu).

    Her cancer is in remission, so she is NOT in a desperate situation.  The fact that she decided to continue DCA treatment tells me this: if her PN is real, it must be very mild indeed.

     

    #4661

    Anonymous

    When I said I wasn’t taking enough B1, I didn’t specify. It was 100 mg for each 375 mg dose of DCA. Let’s say that’s a 1:3.75 ratio of B1:DCA.

    Now, I’m taking 250 mg of B1 and 150 mg of Benfotiamine, along with 200 mg of R-ALA, for each 400 mg dose of DCA. If Benfotiamine is somewhat equivalent in its action to B1, then the ratio is right on 1:1, B1:DCA.

    I haven’t seen anything about a ratio regarding B1and DCA, but it might be worthwhile to see if that relates to protection levels.

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