September 25, 2017

Rebekah: Today is the big 3 week mark for Gigi taking the vitamin. I’ve been waiting for this week very impatiently as this is when several others started noticing changes. It’s possible nothing could change this week of course, but I’m hoping to see sleep changes and blood sugar changes. She has diabetes, so I’m thinking those numbers might change here this week. Who knows. Yesterday she got some very low (good!) numbers, but that could be a fluke. We will see!

October 2, 2017

Rebekah: Nothing major with Gigi. She is reporting that several chronic skin problems seem to be resolving. She also says she feels less brain fog, which she has talked about a lot since I’ve known her. So that’s interesting. Nothing with sleep or diabetes yet.

October 3, 2017

Rebekah: Gigi has now been on MePA for just over four weeks. Here is a more detailed report. There have been 4 things she has noticed.

1. A skin yeast infection around her waist has cleared up. She has had this for some time and has used a special lotion for it in the past.
2. She has reported that the dark age spots on her forearms have lightened considerably.
3. Her sleep pattern SEEMS to have changed, although whether this is due to MePA or not is confusing to me. A traditional night sleep goes like this, according to the Fitbit information: “During the night, you progress through a series of sleep stages from light sleep to deep sleep, back to light sleep and into REM sleep. Then, the cycle repeats.” Gigi has never had textbook sleep patterns (my guess is due to medications and how interrupted her sleep is) but she definitely followed this pattern more closely in the early days of taking MePA. Now her typical pattern is spending the first half of the night alternating between deep sleep and light sleep (with no REM) and then the second half of the night alternating between REM sleep and light sleep (with no deep sleep). She doesn’t have this pattern every night but it is certainly frequent. This is very confusing to me and I have no idea what this means 🙂
4. Gigi has reported that she has felt more “awake” during the day. She has often complained of feeling like her brain never fully “wakes up”. She also calls this “brain fog”. She says she feels like that is not as severe as it has been in the past.

There has been no change in blood pressure or blood sugar readings as of yet. I am graphing her “times awake” during the night, and “% of time awake” during the night, hoping to see a change in that at some point. I’ll let you know if I do.

Gigi read Tom’s [prostate cancer] testimonial today and is requesting to be moved to 2 micrograms of MePA a day. Let me know your thoughts on this. Also any thoughts on her sleep patterns would be interesting to hear but I know you are very busy so no pressure.

I replied the same day:

Gerald: I don’t give permission on this, I only inform the volunteer so they can make an informed decision for themselves.

We would like to fill a person’s body reservoir up quickly, then use a barely saturated replacement dose. So far, we don’t know what the body reservoir size is and we don’t know what the replacement dose should be. These questions are the main thing we are hammering away at day after day in the lab. We think an appropriate replacement dose is probably within a factor of 10 of 2 micrograms per day. We will know whenever we can finally measure low concentrations of MePA accurately in human urine.

Meanwhile, Dr. Aardsma’s Vitamin MePA Dietary Supplement dispenses 2 micrograms per drop. So that is the normal dose at present, and that is the dose Gigi is currently getting. The theory is that the bigger the dose you take, the faster your body will reach saturation level and the quicker you will heal. We think 2 micrograms per day is probably adequate because I was taking just 1 microgram per day when my CIDP began to let up after 3-1/2 weeks.

Theory also says that overdosing with MePA is not likely to be a problem; the nature of the molecule says that excess MePA should simply flush out of the body in the urine. Underdosing is what is known to be a problem. I can see why a person might want to go to two drops per day (4 micrograms per day) to try to speed things up, especially someone up against the sort of deadline Tom was up against. Whether it helps at all is not known.

Mom and I have personally tested the vitamin at higher doses, to see whether we would encounter any bad side effects, and have found it to have no bad side effects at these higher doses. So two drops per day can be regarded as previously tested (by Tom now as well) and found to be safe, as expected. I personally would not venture higher than that unless I had really urgent need.

Let me know whatever Gigi decides so I can keep a record of her dose versus time.

Observations 1, 2, and 4 harmonize with others’ similar observations.

I have no data to compare to Gigi regarding sleep patterns, so there is not much I can say. I should have some helpful data to compare to in a month or two. Meanwhile, it is nice to know something unusual seems to be going on, “nice” in the sense that we are probably about to learn something new and potentially helpful.

October 4, 2017

Rebekah: Thank you for responding so quickly. Gigi was anxious for an answer.

She is up against a similar situation to Tom; she has an echocardiogram coming up in early November. This test is done every year. Her test last year was not good and they indicated that moving towards a heart transplant would be necessary if she saw much further decline. She is quite concerned about this test in November and I expect that she will be moving to a dose of 4 micrograms of MePA per day. But currently she is still thinking about that and hasn’t decided.

I did want to tell you that she had a minor surgery on her hand about two weeks ago. She had her stitches out today and asked her doctor about how the incision looked. The doctor was very impressed and said it had healed “fantastic”. Gigi is very happy about this because with diabetes and poor heart function, healing has been notoriously difficult for her the last few years. She is pretty excited today.

I replied the same day:

Gerald: It appears that vitamin MePA definitely aides healing; Gigi’s testimonial here upgrades this from a “very probably” based on my experience and Tom’s experience.

October 9, 2017

Rebekah: I wanted to let you know that Gigi decided to move to 4 micrograms of MePA and started doing so on October 4th.

Gigi has been taking MePA for five weeks today. Her sleep graphs are starting to show some good trends. I am very excited to start to see some changes in these graphs. I basically stalk Gigi every day waiting for her to wake up and download her information 🙂 I’m hopeful that these good trends continue for her. I’ll keep you posted.

November 8, 2017

Rebekah: Gigi gets her heart test results back today. This is her yearly heart check that determines her future health plan. Should know the status by 4:00 p.m. or so.

There are basically three options as I understand it. One is that her heart has gotten worse, which would be bad news as she doesn’t have much more “worse” she can do before it’s very serious. Second option is that it has improved, which is extremely unlikely according to the doctors. Third option is that it has stayed the same, which would be good news.

Hoping for good news!!

Later that day

Rebekah: Gigi just got back from the doctor.

Good news is that her heart is relatively unchanged from last year EXCEPT for one thing. The heart has four chambers, and if your heart weakens one of the things that happens is the chambers of your heart enlarge to try and cope. Last year, Gigi had three out of four heart chambers enlarged. The nurse practitioner at the time told her straight up that there was no reversing this process. Well, this year the doctor looked at that information and said that she only has TWO enlarged chambers, and the third one looks totally normal!!!!! He looked at it and said “hmmm”.

Still later that day:

Rebekah: Just chatted a bit more with Gigi and got some further information.

First, her pancreas enzymes have been tested three times. The test is called a lipase test. Normal range is 73-393 U/L. Her three test numbers are as follows:

• 3/28/16 – 285
• 4/14/16 – 490
• 11/6/17 – 694

A bit more background on Gigi’s heart. She had an enlarged heart before she got her pacemaker put in. The heart chambers were beating out of sync with each other, causing the heart to be very ineffective. This stressed the heart and caused the enlarged heart chambers. After the pacemaker, this started to heal with time.

Then, she had ventricular fibrillation episodes last spring. The doctors told her this was very damaging to her heart. In a test a few months after this heart event, she had two enlarged chambers, and last December, she had three. This enlargement of the heart is not due to stress, but due to actual damage to heart tissue. This is what she was told was irreversible.

Now here’s something very interesting. Enlargement of heart chambers happens in a particular way. It starts in one corner and works around counterclockwise to all the other chambers as decline happens.

With Gigi’s test, they were not able to get a good image of all four chambers of the heart. One chamber wasn’t clear enough to see what was happening. This chamber was one of the ones that has been enlarged in the past. Now the chamber they told her is no longer enlarged is in the middle of the three chambers that were enlarged last year. So it is possible, if healing happens in the opposite way that decline happens, that her OTHER enlarged chamber is also back to normal! Of course this is just a guess and since they didn’t have a good image of it, who can say.

In any case, exciting. Now we wait for another year 🙂