Wednesday, August 17, 2011

Personal Update 8-17-11

Letter to my LLMD today:

Hi Dr. ________

Thought I should report to you that I am in major pain. Like number 10 on a scale of 10 in my shoulder, the shoulder on the side where I have the stiffness and tremors. Also pain has increased in the rt arm, which is much stiffer than before. 

To treat the back, I've been to the chiropractor twice and the Feldenkrais practitioner once, and then to my GP yesterday, all for nought, thus far. The pain is between the rt shoulder blade and the spine. This has been going on for over one week now. Everyone seems to think it's a spasm in a muscle, resulting from a strain. But I think it's the parkinsonism which is stiffening the shoulder as well as the arm at this point. What muscle wouldn't freak out from being contracted all day? 

I'm taking ibuprofen a lot and also hydrocodone apap 5 500 that Dr Kurn (PD doc) prescribed a while back. But I am pretty incapacitated and the pain is really terrible. Some relief from resting shoulder on a heating pad in bed. If I do anything more than that with the arm I'm in trouble. 

I'm not sure what to do about the IVs. I don't know if this has been getting worse because of die off/Herx/oxidative damage from doing so many antibiotics and antiviral antifungal stuff all at the same time (remember, I am doing IV ceftriaxone, IV Flagyl, azithromycin, valacyclovir, and Mepron all at once). I stopped everything yesterday. Nothing has gotten better so far. It's about the same if not worse. The foot tremors are also nonstop. 

The pain from the shoulder is radiating down the arm and up the neck a bit. My GP, Nicola Hanchock, ruled out nerve compression yesterday. We are trying to get me into an appointment with the Parkinson's doc Matthew Arnold here in Berkeley to see what he has to say, bcuz it seems as though the parkinsonism has progressed rapidly.

I just ran out of IV Wellness glutathione but I reordered some and I should have it in a couple of days. Other Parkinson's symptoms such as loss of balance, difficulty initiating movement and so forth have also increased pretty quickly. It's rather frightening, but mostly the pain is what is getting to me. Maybe we should have a phone conversation.

The old chest rash around the port has revisited but is about a 2 on a scale of 10. And my swollen red earlobes thing has happened again. Skin is now peeling off them, the swelling lasted 5 days. Now waning. Still swollen and red but less so.   



  1. Hi - you might look into the work of Patricia Kane ( Her work has helped people in severe brain condiiions including Parkinson's; specifically I am thinking of iv injections of phospholipids (to repair cell membranes) and glutathione, which is restorative and detoxifying. I have this done for my own brain issues and it is really helpful, sometimes I can't get by without it. Unfortunately a lot of regular docs don't know about this therapy. I believe it to be very safe, although you would want to work with a practitioner who can advise the dose; most llmds should be able to provide this kind of therapy. (I am very sensitive and the dose I use is 7.5cc of the phosphatidylcholine by wellness pharmacy and 500mg of glutathione); I have had this done once or twice a week; I have heard of people having much more aggressive therapy in acute situations. everyone is different. i wish you the best... there's a way...


  2. Thanks, Ginger. I have ordered more glutathione and phos choline from Wellness. I was already doing the Kane protocol.



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