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-   -   hit upside the head by surgeon update (https://www.neurotalk.org/peripheral-neuropathy/19967-hit-upside-head-surgeon-update.html)

LizaJane 05-24-2007 04:59 PM

wingman
 
I was lucky that David was in NY when I had this appointment, even if he was unable to be helpful in note-taking and question-asking as we hoped. Because what he did do was VALIDATE my experience. It was crazy-making to see a doctor who never even asked me if I'm in pain.

I talked to a rheumatologist friend who told me he's the best spine surgoen in NY. I told him I found it impossible to talk with him, and he replied, "yes, that's how it is. He relies on neurologists to take care of people and to send them to him when they're ready to be operated on, and then he sends them back," he said. "Why I sent my father in law to him, and he never met him until the Operating Room!"

I could have told the story of this guy and how crazy it was, but it's so hard to believe, that I'm glad David was there to tell me I'm not crazy; the surgeon was.

(PS. I didn't think him arrogant, btw. I thought him odd. A bit off, like a super-geek who can only talk in an algorithm and if you throw him off he gets all flustered and might get angry, but not mean it. Kind of like overstimulating someone with Asperger's. He was really odd. My own surgeon says he's terrific, and that if I want to abandon him to this one, he'd understand.)

Anyway, I've found another non-surgical thing to investigate. This might be the time for Prolotherapy. This is an injection of an mixture of irritating saline/sugar solutions that cause inflammation and tight up ligaments. It's done by osteopaths mainly. It doesn't have much science behind it, but some people have been helped. A "fibrous" fusion can keep people from feeling pain, they say. So I'm going to call for an appt with someone who does this tomorrow.

Dakota 05-24-2007 05:16 PM

You know, this really teaches all of us a lesson about trying new drugs too hastily. I was in a shoe store today that sells shoes for diabetics or people with foot problems. The owner asked me what kind of a problem I had, and I told him I had painful sensory neuropathy with no known cause. He said, "Have you taken any statin drugs?" I was surprised that he was so aware of this cause of neuropathy -- he sees quite a bit of it. This is one thing that makes me angry at docs that won't prescribe narcotics for chronic pain. Narcotics have been around forever, and as far as side effects go they are well documeted. So you can be aware and watch for any and know what you are getting into. But the docs just love to prescribe high levels of seizure drugs instead, and many of those are new and the long term effects are unknown. (I myself take both the fentanyl patch and Lyrica -- the pain relief is good enough that I am willing to take the risk of Lyriica.) But in many ways, narcotics are a low-risk drug, relatively speaking

Dakota 05-24-2007 05:17 PM

I forgot to say that I am still thinking of you, Liza. I am appalled at what you are going through and am praying for relief for you.

dahlek 05-24-2007 08:47 PM

All that comes to me is to ask....
 
Lize Jane, DID YOU GET TO SEE HIM ON ONE OF HIS "GOOD DAYS" or "BAD"? I dunno, brilliant or not, I would really, really want to be sure that any doc I have and I can communicate as if we are in the same city, let alone on the same planet?
Whatever choice you make, make sure it's an informed one. From all six sides of YOU the puzzle? Sometimes we can be assaulted with information and not able to wholly process it all properly [like a computer with a fault on the hard-drive].
I may be slower than those 'Slowskys' in processing some of the info I need, I do get there at just about the rite time for decisions tho. I hope you do as well.
For the interim.... gentle :hug: :hug: s - j

MelodyL 05-25-2007 12:28 AM

Liza Jane

I know EXACTLY what you meant when you meant that asperger type of behavior in that doctor.

I once went to a dermatologist. Let's call him Dr. W. I first went to him 20 years ago for a cyst on my back. He took care of it.

So fast forward to 5 years go (before I ever heard of Aspergers) and I have a small cyst on the left side of my nose. I DON'T LIKE IT THERE. I wanted it OFF!!! So I remembered Dr. W and he is on my insurance plan so I made the appointment.

I go into his room and I immediately recognize him from 20 years ago and he tells me "sit in that chair". (not on the examination table). and I said "Hi there Dr. W, I went to you 20 years ago". No, "oh really, and how are you, how have you been???" NO NOTHING. He just blankly stares at me and says "why are you here"? I said "well, I have this thing on the side of my nose. He just goes over to a gadget (a cauterizing tool). He walks over to me. No preparation, no wiping it with alcohol, no numbing, NO NOTHING!! and he starts slicing the cyst. I said "jeez, what are you doing?" He coldly says "in a few days, it will form a crust and come off". Put this creme on.

He was the oddest doctor I have ever seen in my whole life. Never smiled once, never had any socialization skills. I wonder if he's married or even has friends. I just got out of there and went to another guy the next week.

And yeah, the thing formed a crust, and most of it fell off. But I never will go to him again. I don't like, well how would you categorize these guys???? No personality doctors????? That's him to a tee!!!!

Couldn't wait to get out. And the waiting room was full.

I just don't get it!!!!

Mel

Now can you see why we LOVE OUR DR. FRED!!!!

daniella 05-25-2007 05:39 AM

Hi. I think docs don't realise how important the personal contact and sensitive caring is. I have seen so many docs and the ones who take the time to explain and really show they care helps the mind so much. It also makes you feel more comfortable with putting the care of your physical health in there hands. I always tell the ones who really care how I appreciate it. I just saw a new neuro and have left 4 messages and 2 were when I was having scary side effects and never got a cal back. Then when I did it was a medical assistant who didn't know and said the doc would call back and never did. I really feel many docs don't care or are so numb to this as so many patients it just doesn't sink in. I think sometimes at job that don't involve lives in peoples hands there is more consequences. There are good docs don't get me wrong but I really feel there needs to be more done to the bads. When I get better that is my mission.Take care and feel better

glenntaj 05-25-2007 06:05 AM

There is also the theory--
 
--that the training most docs get--or at least most used to get, as this is supposed to be slowly changing in the new medical curricula--is specifically slanted towards treating the condition, not the "whole patient".

I have a good podiatrist friend (semi-retired) who tells me this was quit explicitly stated when he went to school; basically the idea is that you have to be detatched from feelings about the patient in order to make sound clinical and treatment judgments. If you empathize with the patient, you may be swayed from recommending the "best" treatment, especially when this treatment is more invasive or more painful. And, if the prognosis is not good, if you allow yourself to feel for the patient, well, then, you may just be too overwhelmed to make good medical decisions. Therefore, it behooves you to have as little emotional interaction with your patients as possible, and you should not encourge them to be emotional with you; one of the ways of doing this is to be as formal and "expert" as possible. Don't laugh, don't make small talk.

I can see the logic of this, but I disagree with the starting premise (that empathy gets in the way of medical judgment).

I also suspect that are a LOT of other things that constrain doctors from making the soundest medical judgments that are not in the realm of emotions--things like pharmaceutical representatvies and health maintenance organization bean-counters--that the medical profession is reluctant to acknowledge. So training docs to be detached for the reason of applying sound medical judgment begs the question.

Fortunately, the opinion does seem to be changing--many younger doctors seem to be trained somewhat differently now, and there are those older gems we occassionaly find. But, given the likelihood that we'll hit somebody who either purposely or inadvertantly won't interact well, it's still a good idea, especially in serious situations, to have that advocate or "wingperson" there to add perspective and dimension, and to push for more info and question-answering.

LizaJane 06-07-2007 10:37 PM

Update
 
Today I went to the surgeon who operated on me, armed with my CT scan from December and my scan from April. In April I had had 4 months of no fosamax, steroids, and 3 months of a bone growth stimulator.

My surgeon was astonished. Basically, I'm the worst outcome he's ever seen. There is zero bone growth. All screws are very loose, and there is no bone growing where it's supposed to to fuse.

He said it's all about my pain, and how I am doing. My nerves are not in danger, he says. (I'm not sure, and I will ask my neuro about another NCS to be sure) So, whenever I feel I can no longer tolerate the pain, or my quality of life, he'd re-do me, or support me fully in being re-done by whatever spine surgeon I feel most comfortable with. (really!).

But, he said, it would have to be a 360, anterior and posterior surgery, where they fuse from behind and remove the disks to fuse from the belly.

When I balked at this and asked about somethign more minimal, he said absolutely no. There would be no point. My fear of the 360 is misplaced, he said. It's only about 20 minutes longer than the postrior only, and the recovery is not terribly different. I was out of work 4 weeks with the original surgery; he said maybe 6 with the 360.

But, he said, he's never seen a failure like this. Usually, when a spine doesn't fuse, you see bone growth, just not enough. Or you see one level didn't fuse, while the others did. You don't see this, he said, where all screws are now quite loose, and every level has zero bone growth at all. He's totally puzzled.

So, I asked him, if he does a 360, what makes him think I will grow new bone then? Wouldn't you expect that whatever is preventing my bone from healing would still be doing that?

Good point, he said, we dont know. He said he honestly doesn't know why it happened. Maybe the Fosamax, maybe the steroids, maybe my body rejectd the bone matrix protein. No way to know.

I'm seeing a bone metabolism specialist at the end of the month; he's hoping he has somethign to add.

I asked him to report me. I asked him to notify the FDA and the manufacturers of the drugs I was on and write a case report, so other doctors would know. Afterall, who knows how many women who took fosamax are having failed spinal surgery if no one reports it? He didn't respond. My take was he didn't want the bother.

The test the bone specialist has ordered are all tests to see if bone is being destroyed: bone alkaline phosphatase, a bone density scan, and urine cross-linked collagen. All these show if bone is being broken down.

But I have no idea what he can do to see if my body is capable of growing bone. It's 3 weeks away.

Not happy here. Not depressed, thank goodness, but definitely not happy. I HATE being an interesting patient.

HeyJoe 06-08-2007 12:31 AM

Doctor Ilizerov who developed the ilizerov spatial frame for non union fractures of the arm, tibia, wrist etc. and whose daughter is currently an orthopedist at HSS in Manhattan, recommended that his patients grind up egg shells for the calcium present in egg shells. My wife had a non union fracture of the tibia for three years until she started to take this type of calcium, she told another patient who's x rays i saw and his tibia was shattered into shards and had not healed in 2 years and his healed. It has also been used successfully on horses that I have am familiar with. its your decision but if the type of calcium you are taking is not doing the job, I dont see what you have to lose, but again of course its up to you.

Wing42 06-08-2007 01:15 AM

Quote:

Originally Posted by HeyJoe (Post 110408)
Doctor Ilizerov who developed the ilizerov spatial frame for non union fractures of the arm, tibia, wrist etc. and whose daughter is currently an orthopedist at HSS in Manhattan, recommended that his patients grind up egg shells for the calcium present in egg shells. My wife had a non union fracture of the tibia for three years until she started to take this type of calcium, she told another patient who's x rays i saw and his tibia was shattered into shards and had not healed in 2 years and his healed. It has also been used successfully on horses that I have am familiar with. its your decision but if the type of calcium you are taking is not doing the job, I dont see what you have to lose, but again of course its up to you.

I Googled various combinations of "egg shell calcium", "egg shell calcium bone density", "egg shell supplement", etc. on Google scholar. There are many studies out there supporting what you posted, if the egg shell calcium supplementation includes vitamin D3.

LizaJane's concern is that she may not have living osteoblasts and osteoclasts to utilize supplemental calcium. I'd expect that if that were the case she would have been experiencing multiple stress fractures in the highly stressed bones of the feet, hips, and jaw over the past few years. That hasn't been the case, which to me is cause for optimism. It will be clearer with further testing.

Not to beat a dead horse, but long term use of any drug should be only in case of dire need and approached with caution. Even with well established drugs like those to lower blood pressure, I ask my physician to prescribe drugs with different modes of action every year at my annual checkup. I recently switched from Lisinopril to Cozaar. Both seem to work equally well to control hypertension, but my hair is still migrating from the top of my head to the insides of my ears, nostrils, and my back. Life is so unfair. :(

glenntaj 06-08-2007 06:04 AM

And, of course--
 
--everything possible should be done to optimize the conditions that would help build bone: major calcium/magnesium supplementation, probably in conjunction with that vitamin D3 supplement--oil-based, preferably (having seen the decidely Caucasian Liza Jane, I'm highly suspicious that she may not be manufacturing enough D through the skin--we do live at relatively high latitiude and she does work indoors, as most of us do nowadays, and there's a lot of evidence coming around that many of us are chronically deficient in vitamin D, and that leads to a lot of problems, including osteopenia/osteoporosis).

Wings' point, I think, is valid. By comparison, we've all seen what Billye is going through, with her multiple fractures. The fact that Liza Jane has not also been experiencing that does lead to the supposition that she has healthy bone cells and sufficient density in at least some body areas--though it'll be a good idea for that bone metabolism specialist to run bone density testing on various bodily areas to see how they compare with established norms. I, too, am suspicous of how her inhaled steroid "overdosage" may have affected her fusion process--and annoyed that the doc is not interested in reporting her case; I suspect she's not the only person this has happened to (though she may be one of the more extreme cases).

From one interesting patient to another--hope you fell better.

nide44 06-08-2007 09:59 AM

Liza Jane,
I'm not too well versed in this area at all- but do have a son who 7 mos ago had a burst fracture at C-5 and had to have an anterior and posterior osteo surgery by a surgeon skilled in spinal cord injuries.
Sadly, he's now a quadriplegic, but in therapy with the doc who treated Chris Reeves and is progressing, somewhat slowly.
True, his case is SCI replated, but my thought is that of the surgeon and the type of 360 surgery that was performed.
You are having problems with regrowth of bone and stabilization of the area.
The screws & plates aren't helping.
Possibly you may find that searching in the area of a surgeon who deals with spinal cored injury (SCI), may give you further insight into the methodology as to what would be best in your situation. I don't know if there is an SCI trauma center near you, but that probably would be a starting point.
I don't know if this would be helpful, but it was just a thought.

LizaJane 06-08-2007 11:58 AM

Nide--I've now seen 3 spine surgeons, and all are in favor of a 360 if I proceed. The two in NY do loads of them, so I'd trust either with the mechanics. It's the bone metaboliism that worries me.

I've been taking a Calcium supplement with magnesium made by life extension foundations, called Bone Restore. This is what it contains:

Serving Size 5 capsules Servings Per Container 30

Amount Per Serving

Vitamin D3 (as cholecalciferol) 1000 IU
Calcium (as dicalcium malate, calcium bis-glycinate, 1200 mg
calcium fructoborate)
Magnesium (as magnesium oxide) 340 mg
Zinc (as zinc amino acid chelate) 2 mg
Manganese (as manganese amino acid chelate) 1 mg
Silicon (from horsetail herb, Equisetum arvense) 5 mg
Boron (calcium fructoborate as patented Fruitex B® 3 mg
OsteoBoron™)

Granted, I do forget it sometimes. Also, I'm taking Acetyl L Carnitine, Alpha Lipoic Acid, Fish Oil, Flax seed oil, SAMe, 5 HTP (This is my wonder drug), and an AREDS formula of antioxidants including A,C,E, Zn, an Lutein. Folate,
and a multi.

I'm supposed to add no-flush niacin, because my cholesterol is very high, and my doctor is reluctant to put me on a statin. Although I'm beginning to think that a low dose of a mild statin might be just the thing. I've tried diet before, and haven't gotten much change in the numbers.

My carnitine blood levels are always low if I begin to miss it, and it makes a huge difference in energy.

Am I covered? Any other thoughts on improving healing as well as lowering the cholesterol?

glenntaj 06-08-2007 03:55 PM

I would definitely prefer--
 
--given your situation, an attempt to use niacin and perhaps more fish oil (and lots of insoluble fiber) to control the cholesterol--nobody with a history of nerve damage, central or peripheral, needs to be on statins, given their propensity for tissue breakdown.

As far as the rest, I suspect you might need a higher dosage of vitamin D3, and I think you would a better magnesium supplement in a higher amount. The general "optimal" ratio of calcium/magnesium is in the 2:1 range, given their electrochemical properties and their tendency to act antagonistically in the body. I don't think you're getting that, given you are using magnesium oxide, which is not well absorbed; a chelated magnesium or magnesium acetate would be more bioavailable.

Have you seen the very long Vitamin D threads at Braintalk on the Vitamin forum and in the Gluten section (which I think would be good to import to the corresponding forums here)?

http://brain.hastypastry.net/forums/...0761#post40761

http://brain.hastypastry.net/forums/...ad.php?t=15249

Reviewing the literature, I am becoming more convinced that many of us--especially us northern latitude types who don't go outside a lot--are walking around with a de facto Vitamin D deficiency, and since D is needed to drive calcium (and to a lesser extent phosphorous) into the bones, this deficiency contributes in a significant way to osteopenia/osteoporosis. I imagine as the demands for bone construction go up, as in those who need to fuse, this can only become more urgent.

mrsD 06-08-2007 04:03 PM

Quote:

Originally Posted by LizaJane (Post 110518)
Nide--I've now seen 3 spine surgeons, and all are in favor of a 360 if I proceed. The two in NY do loads of them, so I'd trust either with the mechanics. It's the bone metaboliism that worries me.

I've been taking a Calcium supplement with magnesium made by life extension foundations, called Bone Restore. This is what it contains:

Serving Size 5 capsules Servings Per Container 30

Amount Per Serving

Vitamin D3 (as cholecalciferol) 1000 IU
Calcium (as dicalcium malate, calcium bis-glycinate, 1200 mg
calcium fructoborate)
Magnesium (as magnesium oxide) 340 mg
Zinc (as zinc amino acid chelate) 2 mg
Manganese (as manganese amino acid chelate) 1 mg
Silicon (from horsetail herb, Equisetum arvense) 5 mg
Boron (calcium fructoborate as patented Fruitex B® 3 mg
OsteoBoron™)

Granted, I do forget it sometimes. Also, I'm taking Acetyl L Carnitine, Alpha Lipoic Acid, Fish Oil, Flax seed oil, SAMe, 5 HTP (This is my wonder drug), and an AREDS formula of antioxidants including A,C,E, Zn, an Lutein. Folate,
and a multi.

I'm supposed to add no-flush niacin, because my cholesterol is very high, and my doctor is reluctant to put me on a statin. Although I'm beginning to think that a low dose of a mild statin might be just the thing. I've tried diet before, and haven't gotten much change in the numbers.

My carnitine blood levels are always low if I begin to miss it, and it makes a huge difference in energy.

Am I covered? Any other thoughts on improving healing as well as lowering the cholesterol?

I am sorry, but the magnesium in this product is useless... totally. You are getting less than 8mg of magnesium/serving from it. OXIDE is not bioavailable.

I am sorry I don't have much time today.... but you can look at the magnesium thread on Vitamin forum for further data.
You can use a magnesium glycinate, lactate or chloride delayed release with more success.

cyclelops 06-08-2007 04:28 PM

Hi L.J.

On the neuro with no personality....what can I say, the majority don't have the best bedside manner, however, if he does have Aspergers, he is likely the BEST read on your procedure...and those people get absolutely OCD on their topics...he may be the best technical doc...he probably doesn't do his own exams or own interviews, because the guy might know he has no social skills. If so, I give him credit for that. He knows his strengths and weaknesses. You can't educate an Aspergers person very easily if at all in reading social clues. I equate it to teaching a blind person what 'blue' is if they never saw it. I have an almost adult adopted Aspergers child who no longer lives with me. You could ask that kid any part of the anatomy of any bug, and she knew it...unfortunately she got into artificial computerized creatures...I will go no further on this issue. Lots of computer geeks have it...and they are good at what they do. We do expect our docs to have social skills, some have a lack of them due to problems, some are just arrogant.

I guess we have to choose. I have always been more prone to go to physicians who have personalities....and for most things, I agree that is key, except for highly technical surgeries...I have learned to change the rule there. If the BEST guy or gal for the job has zero social skills, but is excellent in the surgical suite (pitty the poor scrub and ciruclating nurses), that would be my choice...then I do not need to see him/her again...just do the job, man/mam!!

I think seeing some one regarding why your bone is not healing is key. Having gone thru that 'bone not healing thing' myself, only with a far less important situation, just a tibial plateau, I can not imagine the frustration and worry you must have with your spine. I know my spinal problem of desication at T8 and T9 is very hard to live with...I know I have talked to you regarding my chances of operability. I know what you are facing.

It is essential to find out why that original one did not heal, and I am really reluctant to advise anyone to proceed with a back surgery after one 'failed back' until they find out why it failed...which you are wisely doing.

Perhaps the loose screws allowed for movement..hmm, but that won't come up in conversation. Gosh, even that, tho would probably result in some spurring??

I feel badly that the doc that is supposed to operate has this affliction with social skills. It is so comforting to get docs that can sit down and really talk to us. I just can't imagine going thru surgery without it, but like I said, you need a successful surgery so maximize your chances.

I commend you on your cautious approach, no rushing into things. More people should follow that rule.

If you do choose this guy, maybe you can luck out or even ask for the anesthesiologist with the best bedside manner. That might help in the OR...even a good nurse to hold your hand.

You generally give most readers on the forum advice, so likely I am not telling you anything new....

It sounds like you guys in NY have quite a support system. Out here in the nether world we don't have that....we are just lost in the woods or prairie grass.;)

LizaJane 06-08-2007 05:04 PM

Vitamins
 
Okay, I need to go back onto the CaMg product that I used to take. I thought I had upgraded with that one, but clearly not. In terms of Vit D, my doc did blood levels. And, as you know, I NEVER leave a doctor's office without copies of my labs, so here they are:


Vit D, 25-OH 37 (9-54)
Vit D, 1,25 82 (19-67)

This is without a major Vit D supplement. Just what's in the multivitamin or Calcium product. It seems okay, do you agree?

So, maybe increase the fish oil from 2 Gm to 3, add the niacin, anything else?

Here's my lipid profile. Everyone in my family is on a statin, so it was worrying me. I've been running in this range for a good 15 years now.


Cholesterol <200 253
HDL >40 95
Chol:HDL 2.7
LDL <130 134
LDL-C <130 155
HDL-C >40 93
VLDL-C <30 24
Sum Tot Chol <200 272
triglyc-direct < 150 124
Tot Non-HDL-C <160 179

For Setting LDL-C Goal


LP(a) Chol <10 17
LDL-C <20 12
Real LDL-C <100 126
Sum Tot LDL-C <130 155
Remnant LIPO < 30 25
Real LDL Size Pattern A A
HDL-2 >15 33
HDL-3 >25 60
VLDL-3 <10 13

Trigly <150 120

(I'm siorry, I tried to make nice columns and highlight the abnormals, but they don't seem to stick.

cyclelops 06-08-2007 05:22 PM

Is your HDL 95? Wow that is high! That is fine..but even with exercise I can not get mine out of the 40's, even when I did sprint triathlons...my husband takes a statin and his is high, but his was high even when he didn't take statins or exercise.

Wing42 06-09-2007 01:02 AM

Niacin to lower LDL and raise HDL cholesterol
 
I've been taking 1,000 mg. of pure crystalline niacin twice daily after meals for about two years now. I'm tolerating the niacin with few bad effects except for minor flushing. My lipid panels improve with every test.

ofzeroconcern 06-09-2007 06:00 AM

hmmmmmmm =\

mrsD 06-09-2007 06:33 AM

Liza...
 
you can still use your product.... just add in a better brand of magnesium separately.

It is virtually impossible to find a product with everything in it that works.

This is the product I am using... it is designed to complement dietary calcium intake so it is not high in Calcium.
http://www.pureessencelabs.com/pdf/if_cal_supp.pdf

But the Vit D is not high enough in it. NatureMade makes a very inexpensive D3 that I use to supplement with. When one buys a combo product, it is typical for one or more ingredients to not measure up.

www.iherb.com has both Ionic Fizz products.

glenntaj 06-09-2007 07:22 AM

And--
 
--while those vitamin D levels are within the normal test ranges, there's a LOT of controversy now as to whether those ranges are set considerbly too low.

A number of sources seem to feel that optimal D 25-OH levels should be in the high 2-digit to low 3-digit range. There are a number of studies in Neurotalk's vitamin forum "stickies"--and through Braintalk--that speak to this:

http://www.ncbi.nlm.nih.gov/sites/en...sum&query_hl=2

http://www.ncbi.nlm.nih.gov/sites/en...sum&query_hl=6

http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus

http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus

http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

That cross link to the Braintalk thread has others. The bottom line seems to be that the traditional standard given for vitamin D3 supplementation, 200-400IU/day, is much too low--many of these researchers say that 1000IU-2000IU /day, along with proper calcium/magnesium, should be the standard, and even more may be necessary in special circumstances (such as dark-skinned Muslim women who wear traditional full-body covering in Europe, where there is much less sunlight for direct D3 manufacture).

LizaJane 06-10-2007 03:08 PM

Mrs D, Glenntaj--Do you think the Vit D is not high enough given the high blood level of Vit D 1,25? Will get better magnesium.

Wings: I've begun niacin today, at a lower dose than you. I took a 500 mg tablets. I felt fine for about an hour, and then I felt as if my skin was being attacked by biting gnats or crabs. It burned, itched, hurt, and had a million little points of pain feeling like bites. It was damned awful. It's not even totally gone hours later. The worst of it lasted about an hour. Is this what you went through at the beginning?

Cycleops: Yes, my HDL is high. It always has been, which is why doctors have not been eager to put me on statins, even with cholesterols running over 250. But I do think it's time to get the numbers down, and I don't believe that just having high HDL can protect against the damage done by the ldl.

Wing42 06-10-2007 04:41 PM

Quote:

Originally Posted by LizaJane (Post 111325)
...
Wings: I've begun niacin today, at a lower dose than you. I took a 500 mg tablets. I felt fine for about an hour, and then I felt as if my skin was being attacked by biting gnats or crabs. It burned, itched, hurt, and had a million little points of pain feeling like bites. It was damned awful. It's not even totally gone hours later. The worst of it lasted about an hour. Is this what you went through at the beginning?...

The niacin flush was uncomfortable for about an hour the first week or so, but almost never as bad as you describe. To reduce flushing, take the niacin immediately after a meal to slow absorption. The flushing should mostly go away in about a week, but some will remain as you progressively up the dose to 1000 mg twice a day. Niacin flush isn't an issue at all for me anymore, even if taken on an empty stomach.

If the flushing is intolerable even if taken with meals, you might try cutting back to 250 mg. twice a day. Here's a schedule similar to why my cardiologist had me do (I started at 500 mg. twice a day).

- 250 mg. twice a day for two weeks, then
- 250 mg in the AM and 500 in the PM for two weeks
- 500 mg in the AM and 500 in the PM for two weeks
- 500 mg in the AM and 1000 in the PM for two weeks
- 1000 mg in the AM and 1000 in the PM for the duration.

Be sure to get a lipid panel after a month or so at 2 gm. a day to see how the niacin is helping. My cardiologist has added red rice yeast to my regimen, but I haven't tested since starting it.

It goes without saying, but is worth repeating and keeping in mind that if you take niacin or any other cholesterol controlling supplement, but eat a low-fiber, high carb and high fat diet, have a lot of stress in your life, and don't exercise enough, the rest of your life will overwhelm what niacin can do to help your cardiac health.

My cardiac heredity is so bad that it's tough to get the HDL levels up no matter what. I have a lot of motivation to do all I can to prevent my wife from becoming a widow or full-time caretaker anytime soon.

HeyJoe 06-10-2007 05:42 PM

why not no flush niacin. i take 2,000mg a day with no problem and have never had a flush.

LizaJane 06-10-2007 06:44 PM

Hey Joe
 
Wings has found evidence that no-flush is not nearly as good as pure niacin for doing the job. Perhaps Mrs Doubtfyre has something to add on this?

I'm going to try 250mg tonight, and see how long the "flush" lasts, although again, it was more like being bitten by thousands of fleas than a hot flash, which was what I was expecting.

dahlek 06-10-2007 09:54 PM

Here I guess it's where to ask....
 
How often each of us get a 'complete metabolic panel'?
I'm betting each of us get standard and regular CBP [Complete Blood Panels, sometimes with extra tests tagged on] But the Metabolic panel is less regularly done.
I'll pose the questions under a separate thread as well about Vitamin D and calciums tomorrow. Due to the #'s of my last my CMP, I just wonder about the differences of what's 'swimming' around in my blood and what's really be absorbed? There is the nub of the issue! - j

Wing42 06-10-2007 10:10 PM

Quote:

Originally Posted by HeyJoe (Post 111350)
why not no flush niacin. i take 2,000mg a day with no problem and have never had a flush.

The cardiology clinic at Scripps Clinics specifies pure crystalline niacin. They're adamant that no-flush niacin has almost no effect on cholesterol and lipids and provides no protection against cardiovascular disease, and that recent studies have not supported earlier results.

I'll be seeing Erminia M. Guarneri, M.D ( http://www.scripps.org/News.asp?ID=326 and http://www.amazon.com/gp/cdp/member-...Review&page=13 and http://www.amazon.com/Heart-Speaks-C...1531183&sr=1-1 ) toward the end of the month, and will ask her for references.

HeyJoe 06-10-2007 11:21 PM

nothing is ever easy

Yorkiemom 06-11-2007 12:11 AM

LizaJane:

I took Niacin about 5 years ago and had the same reaction. I also turned red all over. I got my daughter to take it and she had the same thing happen. It was not pleasant. I thought it felt more like burning... All over burning of the skin...

Then my husband tried it, with no effect on him whatsoever.

I would suspect that sensory nerve involvement in PN, which is present in both my daughter and I, plays a part in this burning reaction, but am not sure.

I will be watching your posting to see if this diminishes, as I have been afraid to continue it. Doctors I described this to, never seemed to have heard of this before.

God luck,
Cathie

Silverlady 06-11-2007 08:24 AM

Me too
 
Well I certainly understood what Liza Jane was saying.:cool: I went thru a high cholesterol period. I was very overweight at the time and not watching my diet. Niacin made me itch terribly. It took hours for it to stop. I told the doctor to just forget it and I'd start watching my diet.

For years now I've watched my vitamins to be sure they have the niacinamide version of niacin in them. I seem to be able to take that o.k.

Liza Jane, how are things going now?

Billye

LizaJane 06-11-2007 01:51 PM

250 Niacin
 
It was pretty miserable, again, like being bitten by ants. However, it was definitely milder than the 500. I think I can tolerate this twice a day.

I've not yet gotten myself to read about the differnces between no flush and regular in any scientific literature. At some point I'll put myself onto it, but for now, I'm just believing the most conservative of you guys abuot this: Wings.

Joe, you are lucky that no flush works.

One more day.


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