i told 1 or 2 of you i'd find this; now i can't remember WHO i told this too! so posting this hoping those of you having surgery soon will print off the info and give to your surgeon and anesthesioligist! Betty
Posted by klutzo (Member # 5701) on :
Betty, I had surgery in 4/07 and asked to have the arm with the IV kept down near my body, just like it says in this link, due to my very tight rotator cuffs.
The surgical asst. looked terrified...like she would be fired if she complied, and would only lower my arm to a 90 degree angle to my body. They knocked me out a second later, before I could protest.
The result was that my rotator cuff was torn half way through and I had to have physical therapy for over a month, which left me with copays I can't afford.
I must do PT exercises every day of my life from now on, in order to avoid surgery on the shoulder. I will never have normal range of motion again.
So, speak up early folks!
Klutzo
Posted by Keebler (Member # 12673) on :
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Yes, and speak up to the person in charge . . . who will be there, too.
Also - I know it seems that I see a connection porphyria everywhere. Still, some of the precautions for porphyria patients can save lives.
IMO, a higher than normal percentage of lyme patients may have excess porphryin build-up (if not a genetic or exposure porphyria).
This information may be of help, not just to you, but to others you may know and love.
Fasting or skipping meals can also increase porphyrins to dangeous levels for those affected. IV drips can be administered early to avoid problems.
Directions for surgery can be asked of this groups:
Secondary Porphyria: what you should know before starting a CAP
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Posted by bettyg (Member # 6147) on :
keebler, what's "porphyria" ??
could you edit your post so the EXPLANATION of what that is, is included in the good info you provided for all of us?
those of you with medical backgrounds take it for granted that we should know terminology; this lymie doesn't and can not remember unfortunately !!
any help you can give us when you provide wonderful, detailed info ... would be much appreciated. so if we forget the term, the explanation of WHAT IT IS is shown at the beginning for a quick refresher for our lyme minds. thanks keebler!
klutzo, OH MY GOODNESS! i feel so bad for you; i sure would pursue with them the DAMAGE THEY CAUSED YOU and they should be accountable .... they pay these bills THEY CAUSED! did you pursue this at all my dear friend?
Posted by klutzo (Member # 5701) on :
Hi Betty, Thanks for your concern. I could not pursue it because I cannot prove they did it, since I was under anesthesia at the time.
I had already admitted to the surgical assistant that I had bad rotator cuffs, so they could say it was pre-existing, and I cannot prove I had full range of motion before surgery, though I did.
It may be that the surgeon came in and pushed my arm out of his way, but the surgical asst. was too afraid of him to tell him what I said to her, I don't know.
I worked in a hospital, and if you think ducks are bad to your face, you should hear what they say when patients can't hear!
Surgeons are the worst of the bunch as far as screaming at staff, IME. If nobody told the surgeon, he can't be blamed, since he would not have known. I'll just have to let karma do it's job.....
- - - - - - - - - - - -- - - - - - - - - - - - - True, genetic Porphyria is the closest thing to real vampirism, though nobody is changing into a bat or anything, lol. It has to do with abnormal heme in the blood, but I've forgotten the technical info....try the links provided above.
I think the aquired kind we are talking about here has more to do with hypoglycemia when you don't get plenty of carbs, and I definitely have this problem.
I cannot do low carb diets...they make me deathly ill. I could not even do a colonoscopy because the prep put me into life-threatening hypoglycemia with so much adrenaline pouring out to try to keep my blood sugar up that my blood pressure soared to 230/114, despite strong meds.
However, I am not sun sensitive at all, which should be a part of porphyria, so the reading I've done on it has just confused me even more.
Klutzo
Posted by bettyg (Member # 6147) on :
klutzo, thanks for your reply back; good luck on PT for new problem! Posted by Keebler (Member # 12673) on :
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Porphyria is the inabilty to detox certain chemicals through the Cytochrome P-450 pathway. My doctor (now retired) thought everyone with MCS (multiple chemical sensitivities) has a chronic form of it.
Exercise intolerance, "herx"like stuff . . . the Secondary Porphyria posts really help explain it.
Everyone has porphryins, it's part of the metabolic process. But excess porphyrins surround cells and kill them.
Excess porphyrins can be very dangerous and cause lots of neurological problems, even death, for those whose liver don't make enough of the right enzymes to detox certain chemicals. Those enzymes are not available as supplements.
Many people are undiagnosed until a problem in the ER, where most don't know about it anyway. Had I known about this, it might have saved my mother's life. She had some of the signs, for sure.
both of these articles are the same author. Hard to read as small print and really crammed . . . you can enlarge the type as you read, that might help.
He lists some of the sx of chronic porphryia as related to the treatment of Chlamydia Pneumoniae. That protocol is similar to the lyme protocol.
as for the diet to help keep porphyrins low, I think there is a healthier way to do that but need to study that a bit. Fasting definitely can trigger porphyria attacks in those who have it.
I wonder if just the carbs in medical mushrooms might be enough sugar to keep porphryns. I am not happy about the diet thing but, again, still more to learn. May be other ways to achieve the desired results.
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Genetic is one way to have porphyria, but it can be acquired from exposure to chemicals or from infections. Very complex.
I deal with two types (which I think would go away if the lyme were ever cleared). At least eleven types exist -
over at the current thread:" topic: abx are poison to me" I've posted a lot on this as it fit in with the liver issues.
Links to porphryia associations are on this page, then:
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i feel so bad for you; i sure would pursue with them the DAMAGE THEY CAUSED YOU and they should be accountable .... they pay these bills THEY CAUSED! did you pursue this at all my dear friend?
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