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Old 10-30-2006, 06:15 PM
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fmichael fmichael is offline
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Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
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Kate is of course amazing for choosing two pregnancies while already diagnosed with RSD.

I've had the basic treatments of Pt and nerve blocks, Clonidine patches that never seemed to work, a 4 day lidocaine infusion in an ironically timed attempt to get into ketamine trials while at the same time the IL-6 in my system slipped me a nontransmural coronary infarction that went undiagnosed for a year, and have of late been out searching the landscape for anti-IL6 medications. The one thing that seems to have worked alright for a while were Zometa infusions, which we last had in May of this year, a cessation motivated by both toxicity concerns and the need to end a sort of swich to the end phase of the study, to see how long the effects lasted after giving them up. (Zometa is a "pamidronate," best lnown for limiting to uptake of bone material into the blood stream in patients with bone cancers.)

There's also another little investigation that I am in which is interesting. People have known for a long time of the GI complictions from opioids. Now they have GI doctors who have tracted down a particular baterial bloom leading to the production of neurotoxins of all things, and for which I have treated three times over the last six months with the antibiotic Xifaxan (200 mg) [2 tablets 3/day for 10 days]. In the meantime I am taking the generic version of Narcan, an E.R. heavyweight drug used to block opiod receptors through the body when given iv or im. The theory is is that, when taken orally along with the opioids, the drug, Naloxone HCL, will shut off the opioid receptors in the gut while the pain killers enter the blood stream itself. [So far it feels as though the first two rounds of the Xifaxan were the more succcessful, giving me some relief for as much as six consecutive days therafter. The backup issue of Narcan making maybe some but not a great deal of difference.]

In the meantime, over the last week or so, if I have been at all active (in terms of running a couple of errands or so) I have just been subject to the heaviest sense of cramping that I have ever experience, like being ground between hard rock, notwithstanding Nuerontin, Xanax, Zanaflex, oxycodone and Marinol. (Lyrica having given me significant amnesia.) Now it's just a matter of trying to survive - or so it seems - until I can get my next Zometa infusion on November 16th.

The Zometa helps with about 40 % of all focal pain, but does nothing, unfortunately, for the cramping, and where Xanaflex carries most of the weight, with a Marinol assist, Baclofin and I never having really hit it off and Topamax never having been a viable candidate due to some eye issues.

I am sorry for all of this long winded buildup, but . . . If anyone can suggest anything for this feeling of being crushed at every turn, I am all ears.

Mike

Last edited by fmichael; 10-30-2006 at 07:11 PM.
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