and...about the skunk. since when did we start speaking in binary code? in case you were using metaphor -carrying respect and reputation in your 1st chakra while mothership is landing ?? zeus has arrived for the electric storm and thanks for the rinse reminder - btw day 2 on vinegar - smoother quicker pineal connect (I like that term better than "on")

Rick - your silence is deafening. Are you ok?

http://www.youtube.com/watch?v=mLpMcXh-ew8

Yes, I seem to be, thanks. Still riding this current wave of optimism. My current guess is that I have let myself get a little anemic which has been aggravating the PD. Or I am a sinemet junkie. Or both. -Rick

Rick,
You don't get to post that you dropped from 2000g ld down to 600 in 2 weeks then came possibly within an inch of your life and stay silent w/o tweeking my heart.
Have you considered coming off the l dopa a little ( a LOT actually) more graduallly?

oh the impatience of youth......sigh

Appointment with GP tomorrow morning. He is going to be so happy to see me. I just show up every three or four years to explain my self-diagnosis and treatment plan and would he mind signing a few prescriptions? Gotta pity the guy.

I have figured out some of what is going on. Thirty years ago and shortly after getting married, my then=GP was doing a routine physical for me when he came up with some numbers on the lab work that got him rather agitated. He urged me to check in at the local hospital for further testing as in "today!" Because the object of his concern was one of the nastier anemias and because I had started on a strict vegetarian diet not too long previously, I convinced him to let me bring lean red meat back into my life and see what happened. Sure enough, after the sacrifice of several medium-sized mammals the numbers came up to where we wanted them and all was well.

About this same time, the GP moved out of town so there was limited followup. But I felt fine and eveything seemed OK. Time went on and I forgot about the incident. Luckily, my wife did not. It is to her that my thanks goes for much of this that follows.

It is starting to look like a whole flock of pigeons is coming home to roost as several seperate threads of late weave themselves together. The miserable way that I have been feeling over he last year. The steadily increasing feeling of doom that was more and more a part of my thoughts. The loss of the ability to do anything around the house. The realization that I was increasingly becoming housebound. The loss of muscle tissue to atrophy. An acceleration of loss over the last couple of months. The seemingly unrelated problems with potassium control that Laura and I had had to face. It seems to be leading somewhere.

A patient can have a deficiency of Vitamin B12. That is clear enough. That deficiency can be the result of damage to the intestinal tract as in celiac disease. Or it can arise from the inability of your stomach to produce a chemical called intrinsic factor which must be had in order to get the B12 seperated from the food so that you can make use of it. Various types of anemia can present as well. All these result from too little B12. Some of them can be quite fatal.

B12 is everywhere. And if you are deficient for a long time, you have a pentup demand for it to deal with all those cellular "To Do" lists. When that fresh supply of B12 hits town everyone gets busy. As a result, other secondary shortages pop up. Things like potassium, for example. That's what caught me by surprise and knocked me out. My body was moving potassium to safety and making it inaccessable. And that was part of the problem along with the anemia.

Rick,

"The miserable way that I have been feeling over he last year. The steadily increasing feeling of doom that was more and more a part of my thoughts. The loss of the ability to do anything around the house. The realization that I was increasingly becoming housebound. The loss of muscle tissue to atrophy. An acceleration of loss over the last couple of months."

I could have written that!

For more info Sally Pachalok's book is great, and look up the UK's Pernicious Anaemia Society web site (PAS), an active forum going on there. There are people there with as many difficulties as PwP have, but with no remedy because treatment of serious damage from undiagnosed B12 def is largely unrecognised by mainstream medicine. As with everything self education is a priority. Get that B12 and folate thing sorted out, the anaemia will disappear with folate supplementation, and then what you are dealing with is a longterm damage repair thing, and if you have lost intrinsic factor then you need this stuff ongoing. The longer it goes on the more damage. PAS has a checklist you can download, see how much chimes with you.

Mrs Doubtfire and Muirann know about this stuff, much more than I do. If your tests show that you have a deficiency, and it is treated, don't be surprised if you feel worse initially, some do, some don't, dependent on the kind of damage. Also you may not feel anything - this is something you can pee out quite easily, and it may not make enough difference to start off with.

Something else you need to know is usually you would be treated with close together loading doses, make sure you get them. Once very 2 or 3 months is going to get you nowhere if you don't have them.

Good luck. Hopefully it will resolve some stuff.

sooo,

your not mentioning the possibility that the weakness you experienced (recently - not over the year) could have been heaart failure due to shock from VERY fast ldopa reduction.

you must be a black box to him so i hope your're honest with him. best of luck.

Pure as the driven snow etc, etc.
I fear that he failed to recognize my genius. Kept wanting to talk about prostates and blood pressures. Horrid little man.

And so I cinch up my straps and face the windblown snow. Here is our story to date.

https://www.mayoclinic.com/health/vi...ent-vitaminb12

"The human body stores several years' worth of vitamin B12 in the liver, so nutritional deficiency of this vitamin is extremely rare. However, deficiency can result from being unable to use vitamin B12. Inability to absorb vitamin B12 from the intestinal tract can be caused by pernicious anemia. Vitamin B12 deficiency is common in the elderly. HIV-infected persons and vegetarians who are not taking in proper amounts of B12 are also prone to deficiency...."

"Studies have shown that a deficiency of vitamin B12 can lead to abnormal neurologic and psychiatric symptoms. These symptoms may include ataxia (shaky movements and unsteady gait), muscle weakness, spasticity, incontinence, hypotension (low blood pressure), vision problems, dementia, psychoses, and mood disturbances. Researchers have reported that these symptoms may occur when vitamin B12 levels are just slightly lower than normal and are considerably above the levels normally associated with anemia. People at risk for vitamin B12 deficiency include strict vegetarians, elderly people, breastfed infants, and people with increased vitamin B12 requirements associated with pregnancy, thyrotoxicosis, hemolytic anemia, hemorrhage, malignancy, or liver or kidney disease. Administering vitamin B12 orally, intramuscularly, or intranasally is effective for preventing and treating dietary vitamin B12 deficiency."

Well, we shall see where this path leads. I have diluted a Jarrow 5000 to begin by crushing one tablet into a bottle containing 50 droppers full of water and taking one of those.