posted
I have not been able to post here in over a month. Sitting is hard due to osteoporosis type compression vertebral fractures at L4 & L5. I didn't know it but I also have another old healed one at T10.
Even with a California LSO brace, I am not able to sit for long periods. Picture a black velco attached girdle with more velco to really hold me in. Sexy it ain't.
Getting an increase in pain meds has been an adventure in bad medicine. Due to my age (49) getting this diagnosed has been difficult too.
To top things off my computer developed IBS after a power outage corrupted the system files. Mostly the constipation improved when the hard drive was replaced.
My new ortho doc looks like a 12 year old Lex Luther from Smallville. He never wastes an opportunity to push kyphoplasty on me. Not to mention the "bone building meds" advertised on TV.
I got the Boniva kit but it needs to be administered via IV push. None of the rural IL docs want to give me the med.
They advise taking it over to the hospital outpatient department. Do they not want the liability? Or can they all just not have a skilled RN to do IV push?
This isn't even something controversial like IV Abx. Sally Field aka "Gidget" "The Flying Nun" or "Mrs Walker" is pushing this stuff. Can it be bad if "Ms Wholesome" herself is plugging it?
Is there something better? More natural? Does anyone know anything about strontium? That's been highly recommended as number one in Europe but of course it can't be patented so it's not on TV.
Has anyone with Lyme had kyphoplasty? That's where they inject glue or cement under high pressure into the vertebral area to plump it back up to it's previous volume. I read the glue leaks but Dr Lex can't tell me where it goes. Does it really help the pain?
Are spinal fractures common with Lyme? I just started growth hormone in Sept after flunking a stim test. My pituitary and hypothalamus don't make it anymore. Thanks Mr/Ms Tick!
Dr C says it takes 6 years of being growth hormone deficient to cause osteoporosis. But the big question is how long does it take to reverse? Can it be reversed? Any and all advice would be appreciated.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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posted
I am so sorry for what you are going through. I am 43 and I am having terrible issues with my spine. I can barely sit up at all anymore, and I don't even have a diagnosis of what is wrong with my spine. doctors are trying to say it is normal aging.
how did you go about getting a diagnosis? I have a bunch of bulging discs, just about at every level (12 levels) I also have 2 slipped vertebrae, and a ruptured disc.
to clarify: I am being treated with abx for lyme and co-infections, I dont have a diagnosis of what is wrong with my back
my pain started in my neck, then spread all the way down to my lower back, then around my ribs, now to sacrum and pelvis. this took about 4 years for it to spread, from 2004-2008.
i have a pain dr, but she is clueless and is trying to get me to go to physical therapy. everytime i go, i get excrutiating pain and it takes 2-3 weeks to heal. no fractures are showing up except one in 2006.
[ 17. April 2008, 06:01 AM: Message edited by: roro ]
Posts: 615 | From maryland | Registered: Oct 2007
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
I've reversed my osteoporosis of the spine in 2 years.
I take strontium citrate pills (non-prescription), 680 mg per day on empty stomach; actually about 2 out of 3 days.
I take Vit K2 menaquinone-4 ( called "menatetranone") pills, 45 mg (sic) per day.
I take "Bone Restore" Calcium pills, Life Extension brand, the evening or night dose being the most important; and magnesium pills to balance the calcium.
I hope you know about basic nutrition for other things like selenium, zinc, copper, B6, Boron, glucosamine, etc.
Exercise is crucial for me, both impact exercise and resistance exercise. Vit D supplements I take, and get tested.
I posted a Pubmed article about essential oils hindering the osteoclasts that work at night dismantling your bone, like Penelope. I was taking 2 or 3 drops of sage oil for a week and drinking sage tea for a year, until i learned that sage oil contains toxic ketones, mainly alpha-Thujone, which is the active ingredient in Absinthe.
I hope you noticed that I don't take doctors' drugs like bisphosphonates.
Strontium has a few risks, be sure to search it, you can read about trial results under "Protelos" the European drug made by Servier. Such as, a 1.49 risk of blood clots. I take Nattokinase to combat this effect.
[ 18. April 2008, 09:44 AM: Message edited by: pamoisondelune ]
Posts: 1226 | From USA | Registered: May 2007
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ralph
Unregistered
posted
Best reference I have seen / used is titled "Perfect Bones" by Pamela Levin. Excellent info on how protein is needed to form the frame for the minerals to be deposited in. Fats are the "taxis" that take the minerals to the bones.
And hormones are the "bone bank managers" that control all. And of the course the "guards" that help the bones stay healthy are exercise as mentioned above and staying off of certain foods. Available at www.amazon.com and do a search with the title.
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I've heard about vertebroplasty but haven't spoken to anyone who's had one. Ask your MD about the success rate.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I recently had a bone density scan which showed I had osteoporosis. I'm 54 yo and have been physically active most of my life before Lyme.
I was referred to an endocrinologist who specializes in bone metabolism and he said that some of my labs were very "mysterious". I told him I was sure that my osteoporosis was due to Lyme disease. "That's very rare around here" is what he said, which made me roll my eyes and I had to tell him that it really isn't.
Anyway, he ordered a battery of more tests and when I went back for a f/u, he said that he couldn't figure out what was causing it, but I was losing bone at a much faster rate than normal. He was able to rule out cancer, fortunately. And again I told him I was sure it was due to my Lyme disease. "You've heard of Lyme arthritis?" I asked. Well, those bugs are just eating away at our bones and joints. Mainstream medicine just doesn't realize what a serious illness this is yet." Then he said, "You may be right". Apparently I have some hormones that are as good as a 20yo, but my bones are similar to a 70yo.
I'm going to be starting Reclast infusion (once yearly dose) as soon as possible and am treating my Lyme as aggressively as possible. I hope it works, but until I get rid of the bugs, it will continue to get worse, maybe just not as fast.
I've also been diagnosed with spinal stenosis and have noticed that sitting on hard chairs starts bothering my lower back. I hope the Reclast will help slow or stop this from happening.
Patti
Posts: 975 | From California | Registered: Apr 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i, too, have a of back pain. i have bulges throughout the neck and lower back.
some days it hurts so bad i can barely sit on the toliet....
my L4 and L5 are shot....
but i'm never having back surgery. i have a friend who has had 3 lower back surgeries and now has what they call failed back syndrome. she's on heavy duty oxycontin and had to quit teaching....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
My teenage daughter with Lyme and co-infections had terrible neck, back and knee pain for more than three years...(and was in wheelchair that long due to pain.) Just this summer, we were guided to see a chiropractor who specializes in the upper cervical area (the neck.)
Dang, if my girl isn't up and walking around (after 14 treatments). Now, her main pain is in her ankles and feet, which had atrophied from dis-use. The chiropractor is working on those now, and she is getting better every day.
The theory of upper cervical chiropractic is that when neck vertebrae are out of whack, it can affect how the brain communicates with the rest of the body. When things are lined up properly, everything works better, and the body returns to doing what it's supposed to do.
It certainly worked for my daughter.
Posts: 991 | From California | Registered: Feb 2006
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