Doing much better!

[Dpeachey]

It’s been a while since I last posted anything, and I might as well fill you all in, now that we’re supposed to isolate and life has slowed down even further. Since I last wrote a lot has happened with me, and thank God, it’s mostly been encouraging.

I’ll start with the Lyme Disease- I mentioned that in one of my last posts. There are only two LLMD’s (Lyme Literate Medical Doctors) in all of Canada, one in Calgary, Alberta, and one in Toronto, Ontario. After a blood test with iGenix lab in California came back positive for Lyme, the Dr in Calgary put me on a 3 month round of Minocycline, gave it a break for several months and sent another blood sample to Armin labs in Germany. We had a heck of a time getting a viable blood sample from our remote northern area to Germany, but after 3 tries we finally accomplished it by driving to Edmonton (650 kms) and getting the blood draw shortly before the courier left for the airport. The outcome of the sample showed up (in their words) “within threshold.” So it looks good on that front.

We also had a specialist over to remedy the spot in our master bedroom walk-in closet where we found black mold resulting from a leaking vent pipe in our attic that was dripping condensation on the closet ceiling. I don’t know if that helped, but we wanted to fix anything that could be causing health problems.

A year ago I went to our MD and asked for a prescription of Sinemet. He can only give a prescription of up to 300mg per day, and I didn’t notice any improvement. Our nearest movement disorder specialist is in Edmonton, so we booked an appointment for July, and after he put me through about 45 minutes of questions and movement tests, he sat us down and gave me the prognosis. His words, “You don’t only have typical Parkinson’s Disease, you have what I call ‘classic Parkinson’s Disease.’ “ He was happy that it has been progressing slowly, (symptoms started 11 years ago) and he said the 300 mg of Sinemet was not enough to make any difference. He had me gradually increase the dose to 200mg , 4x daily. I saw him again in October, and he was really pleased with my improvement, and that I have no side effects from the meds, except strangely, if I take the meds on an empty stomach, I start yawning like crazy in about half an hour for about 30-40 minutes. A few of you responded with similar reports when I posted the question about this a while ago. My next appointment is coming soon in May.

Many of our friends have noticed a lot of improvement. The changes have been slow and subtle, nothing dramatic. And oh! I almost forgot to mention I’m at 2000mg of Vitamin B1 and still experimenting with the dosage on that.

And now for a little boasting! I had started to lose a lot of my normal self confidence, and it especially showed up in driving and public speaking. I was getting my wife to drive more, especially in larger cities I’m not familiar with. I used to enjoy the challenge of navigating with a map and in recent years with GPS, but had all but stopped driving. I would do the navigation for her, and although she is a good driver, it was a disappointing development. Last fall we took a 10 day trip to eastern Canada, and to my surprise I found myself doing all the driving, and doing it comfortably! Then beginning of March we took a road trip making stops with friends and family all the way to a wedding in Pennsylvania, then on to Virginia, and Oklahoma. We travelled a total of 10,300 kms, and I’m ever so happy to tell you I drove every inch of it and as in old times I did my own navigation too. We had to cut our trip short by 3 days because of Covid-19, and drove over 16 hours the day we crossed the USA-Canada border. And I felt great!

I didn’t mean to write a book here! Sorry. But I hope my experience will encourage others to keep trying to find good health and not give up. I’m by no means healed or cured, but I’m a lot better than I was even 5 years ago.

Regards,

David.

[MBAnderson]

Since' it's not likely that your Parkinson's has been reversing on its own, seems like much of your improvement might be due to your having dealt with Lyme disease and removed the mold.

[Dpeachey in reply to MBAnderson]

You’re probably right MBA. I was a bit disappointed that the PD symptoms were not all a result of the Lyme and mold.

[MBAnderson in reply to Dpeachey]

How do you know it is not? With as much improvement as you've experienced, is it possible you don't have PD ?

[MBAnderson in reply to MBAnderson]

What you describe is dramatic improvement and doesn't happen spontaneously with PD

[jimcaster in reply to MBAnderson]

...unless you have had PTT in Switzerland... 😊

[silvestrov]

What were your Lyme-associated symptoms or why did you think you had Lyme D? Also, it would be interesting to have your story summarized in a time line. I am glad to hear you are doing better.

[Hidden]

You’re experimenting w 2000mg thiamine hcl. Good going.

[chartist]

David,

Congratulations on your multiple improvements! Always good to hear about improvements! If you don't mind, I would like to copy and paste your post into the post where many members have reported how B-1 has or has not helped them. Here is that post and it does take a while to load because there are so many replies in it:

healthunlocked.com/parkinso...

Art

[Dpeachey in reply to chartist]

That is quite alright, thank You, Art!

[MehmetKutlu]

Very happy to see your positive changes ! Gave me hope. I just wonder: How could you be sure that your marked improvement is not due to minocycline ?

[Pnyldy]

It certainly does encourage!! Thank you for sharing. Best wishes!

[Enidah]

I find it fascinating that nobody here has mentioned the sinemet he has started taking at a much higher dose, 800 mg a day if I read that right. It is certainly what made all the difference for me once I was finally diagnosed.

[Hikoi in reply to Enidah]

Enidah, I have been following this post to see if anyone commented on the sinemet. It is mind boggling to me how people just ignore it and grasp at anything they can even to putting it as a B1 success. Thankyou for your sanity.

[bbc680]

Very happy to hear reports like these.

[Sandmanliz]

I also had Lymes I was in bed for two years. I finally recovered by following the advice of a book here in the states by Stephen buhner. Wouldn’t count on those Antibiotics being a long-term cure. I also have Parkinson’s now too. Originally I had essential tremor most of my life so between that and the lines I didn’t really understand I had Parkinson’s for a long time. So glad you’re doing better. I am experimenting with a B1 dosing as well. keep in touch it’s hard to find people who had both. After Lymes, Parkinson’s is a snap

[OREOLU]

A very inspiring story of a well medicated PD symptoms. I pray your current medication regiment last very long .Kudos.

[koshca]

sinemet 800 mg is the key.