Author |
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Sharinia
Member
09-07-2002
| Sunday, September 09, 2007 - 5:39 pm
Karuuna, do you know if the magnesium you had tested was the usual serum - or have you had RBC testing as well? There can actually be a dramatic difference. Holistic practitioners will sometimes test for RBC with more cutting edge, progressive labs like MetaMetrix and Great Plains. Don't know if you have read any of the works of Sherry Rogers MD ... Your symptoms just seem to scream classic magnesium deficiency. Of course maybe it's not... but I would hate for you to miss this if it could help. If this is your only health concern it does seem less likely that it is Lyme. But from what I understand Lyme can lay dormant and you can be asymptomatic - so maybe it could 'just' present with muscle spasms? I actually have a friend who had very problematic muscle spasms that he controlled with high dose magnesium, and they are finally diminishing now with Lyme treatment (although he had many other Lyme symptoms as well). But the muscle spasms were a big thing for him. You may want to try a trial of a high quality magnesium source like Gillham's 'Natural Calm' just to see if it helps any. This is what Dr Rogers recommends. I also wonder if you could be experiencing a 'hidden' ongoing food or chemical reaction. I have had some pretty odd (and dramatic) neuromusuclar symptoms myself, and to my surprise was able to trace them to something in my diet or environment (that gave me no problems previously) Sorry if this is TMI ...
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Pamy
Member
01-02-2002
| Sunday, September 09, 2007 - 5:49 pm
Shar, never too much tmi here! it is great info and I am happy your sharing!
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Sharinia
Member
09-07-2002
| Sunday, September 09, 2007 - 5:50 pm
Pamy, if you do try the baths, please be sure to start out slowwly - they can really knock you on yer ass -- the mag sulfate can trigger a very powerful detox reaction. start with a 1/4 cup and slowly work your way up to 2 cups
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Sharinia
Member
09-07-2002
| Sunday, September 09, 2007 - 5:52 pm
aw thanks (((Pamy))) 
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Karuuna
Board Administrator
08-31-2000
| Sunday, September 09, 2007 - 5:58 pm
Shar, thanks for the info on the mag supplements. I will look for them, any idea where I should try? At one time I did look for a chelated mag supp, but was unable to locate any locally. That's what a holistic practitioner recommended. It's not TMI, it's just that I've been going round and round for two years, have seen two neurologists, a university neuromuscular clinic, and two holisitic practitioners. Everyone has an answer. No one has the right answer. In spite of all that, I have seemed to be getting better slowly overall, and perhaps mostly because the last med helped me sleep soundly. Now it turns out that med is making me gain too much weight, so I have to stop taking it. It's just very frustrating! I'm not sure I'm ready to jump on the try another doctor bandwagon just yet. It's many dollars and much lost time just to end up at another dead end.
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Babyruth
Member
07-19-2001
| Sunday, September 09, 2007 - 6:35 pm
Some info about magnesium: http://ods.od.nih.gov/factsheets/magnesium.asp Reminder: All electrolyte and vitamin supplements (especially large doses) should be used with care and preferably medical or registered dietician advisement. 
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Sharinia
Member
09-07-2002
| Sunday, September 09, 2007 - 6:47 pm
Kar, I totally understand..... that's why I was cringing inside sharing this. But you just never know which thing might be the 'right' answer, you know? I have had been in this 'world' for 7 years now (used to be extremely ill and disabled - thankfully mostly better now). I have really been around the block let's just say. And I have met so many people who tried and tried things like you have been, and then suddenly hit on 'it.' happens all the time. I have met women who had problems honest to God for 20 years, much more severe than yours, who finally found the right doctor or cure and got totally well. It is extremely frustrating, but please never think Karuuna (Pamy, Mamers, et al) that the answer for you is not out there. I truly truly believe that it is. I realize Kar that your condition is especially unique, but trust me, there is sooo much out there and something will work for you... In fact, here is another therapy you may want to consider (I found it helpful) http://www.mercola.com/nst/explain.htm here is where you can buy the mag I am talking about at a discount http://www.needs.com/store/search_action.asp uggh....I know it is pricey, but if you wanna give it a shot, it is supposed to be the best non rx mag supp out there. Babyruth brings up a good point btw. What Dr. Rogers suggests is starting slowly and working your way up....and then seeing if you get any cessation in your symptoms. If you do, then you can presume that you are in fact deficient. If not, then maybe not.
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Sharinia
Member
09-07-2002
| Sunday, September 09, 2007 - 6:54 pm
sorry - I was hoping that url would bring up the product directly. just type 'natural calm' into the search box if you are interested http://www.needs.com/
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Pamy
Member
01-02-2002
| Sunday, September 09, 2007 - 7:42 pm
my friend told me to try coral calcium..take 6 -9 per day....anyone try it?
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Sharinia
Member
09-07-2002
| Sunday, September 09, 2007 - 7:52 pm
yup, I have Pamy....I actually didn't notice any effect but know ppl who have i think it depends btw on whether you are already deficient - i had always had a ton of dairy and took calcium supps so that's prolly why i didn't notice anything.. but i do think it is a good source of calcium and trace mins. some very good docs swear by it
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Karuuna
Board Administrator
08-31-2000
| Monday, September 10, 2007 - 6:49 am
Babyruth, thank you. Believe me, anything I try, I have to try VERY slowly and work my way up. The last med I was on was Lyrica, and I never even made a 1/3 of the recommended dose; but still got very good relief. At the same time, I got twice the effect of weight gain (of the normal dose)! Sigh. Sharinia, thank you, and I agree. I think we all need to take breaks sometimes from the medical roller coaster too, as we try to find the right solution. And then there are time and life considerations as well as the financial ones. New meds - $300 a month. Double sigh! I'll try the magnesium, slowly. As I said, the holistic health practitioner I saw said to try it, altho I couldn't find chelated magnesium locally. That website also sold the d-ribose I wanted to try (Corvalen) so I was able to order that also! Thanks!
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Karuuna
Board Administrator
08-31-2000
| Monday, September 10, 2007 - 6:55 am
By the way, since the Lyrica did work so well for me, it kind of confirmed for me that the problem had something to do with either very poor sleep quality; or some kind of neurological issue from the West Nile disease. Lyrica blocks calcium channels, thereby decreasing the nerve impulses that are causing the muscles to spasm. So, I'll keep trying new stuff. Something has got to work! I do appreciate all the support here, even tho it's technically not Fibro, it is similar. You all are great!
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Babyruth
Member
07-19-2001
| Monday, September 10, 2007 - 8:41 am
Kar, since Lyrica worked for you, I am wondering if you've tried gabapentin (Neurontin)?
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Karuuna
Board Administrator
08-31-2000
| Monday, September 10, 2007 - 9:55 am
Oddly enough, Babyruth, I was just wondering myself why the doc hadn't prescribed that. Probably because it's now available in generic? I was going to call her today and ask her, but thought I'd look up the side effects first. if there is an odd side effect to meds, you can be sure I'll have it! 
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Jagger
Member
08-07-2002
| Monday, September 10, 2007 - 11:38 am
I've been reading a little bit of this thread and I've noticed the prescription Lyrica mentioned several times. My doctor just put me on this for extreme feet and leg pains. I have been living on Vicatin for about 3 months now and I really need to find something else that will cure this pain, all Vicitin does is cover the pain but doesn't cure it. The neurologist still has no clue as to what is going on with my body, all I know is that it is getting worse in leaps and bounds. I don't mean to Hi_Jack this thread but when I saw the same meds listed I just had to read and post. I plan on going back and read as much of this thread as I can.
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Karuuna
Board Administrator
08-31-2000
| Monday, September 10, 2007 - 12:00 pm
Jagger, Lyrica works to block nerve impulses, so has a very different mechanism than pain killers like vicodin. I will warn you that some people have had a very hard time with it, and it is a very new drug - so no telling what the long term side effects might be. You should build up slowly and taper off slowly if you need to stop taking it for any reason. It is similar (as Babyruth mentioned) to a drug that has long been used for nerve pain, Neurontin. Since Neurontin has been around longer, it now can be offered in a generic form (much cheaper!). Lyrica, on the other hand, is quite spendy. Good luck with it. I loved it, except the 5 pound per month weight gain.... 
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Sharinia
Member
09-07-2002
| Monday, September 10, 2007 - 7:56 pm
Karuuna, I know... trying different things can be such a money sink, and time and energy consuming. What's really heartbreaking is that there are some severe fibro/cfs patients who are truly unable to work and can't afford the things they need to get well. Often their disability claims are rejected, and it is not uncommon for them to be abandoned by their spouses. Utterly heart breaking Anyway, take care and good luck with the new supps.
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Juju2bigdog
Member
10-27-2000
| Monday, September 10, 2007 - 10:27 pm
Hey, Karuuna, I could send you some bigger clothes from my working days. Unfortunately they are not very stylish, BUT you can conceal a gun at your waist in all of them.* *(Karuuna and I are the same height, which is taller than everybody else; I retired from law enforcement) Oh! And the good news on weight gain, if it's any consolation, is that it is easier to find arms and legs long enough in a larger size. Plus, at our height, you can gain quite a few pounds and not look a whole lot different to anybody but yourself.
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Sharinia
Member
09-07-2002
| Monday, September 10, 2007 - 11:34 pm
how tall are you and Kar, Juju? i come from a tall family.. my dad is 6'4", my brother is 6'3", and my sis is 5'9" my 6'3" hubby always calls me a 'shortie' and then i have to stress that i am MEDIUM / just right / etc at 5'5" lol
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Wargod
Moderator
07-16-2001
| Monday, September 10, 2007 - 11:44 pm
Both of them are tall. Very, very tall. Or maybe I'm just short.
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Karuuna
Board Administrator
08-31-2000
| Tuesday, September 11, 2007 - 5:49 am
I'm 5'12". Juju, I may have to take you up on that offer. I had a miserable night of little sleep and lots of pain in my hands especially. Plus I seem to have come down with some kind of upper resp infection. Just shoot me!
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Sharinia
Member
09-07-2002
| Tuesday, September 11, 2007 - 12:46 pm
WOW!
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Juju2bigdog
Member
10-27-2000
| Tuesday, September 11, 2007 - 1:40 pm
Kar, it sounds like you are not worth shooting. There there. Hope you feel better soon.
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Pamy
Member
01-02-2002
| Tuesday, September 11, 2007 - 5:38 pm
Kar is a tall beautiful leggy blonde....just ask my DH and War's DH...they would both leave us in a heartbeat for Kar....(thats why I handle all of the money now )
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Sharinia
Member
09-07-2002
| Tuesday, September 11, 2007 - 6:55 pm
uh oh, sounds like I will need to keep her away from mine too...he's a blonde/leg guy!!
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