posted
Ok so my question for those who have been cured after years of treatment (or those who are on their way) , have got rid of spasticity, or is this sth that will stay with us forever?
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
anybody? if not, my conclusion will be that lyme is just incurable or doesn't exist and we deal with some other serious neuro issue...
Posts: 723 | From Montreal | Registered: Oct 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I had spasticity when I had RSD, but now that the RSD is in remission, the spasticity has gone away. So I do believe it is possible for this symptom to go away with appropriate Lyme/coinfection treatment.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Most of my spasms have recently been greatly reduced, after 10+ years. I can now sleep uninterrupted by them for 5-6 hours, which is amazing.
It's a long and sordid story but the keys for me seem to have been 1) get off dopamine drugs (originally dx when an MS patient), 2) 6 months Bactrim / doxy, 3) difulcan, 4) stop eating gluten, dairy, nightshades, peanuts. These all seem to involve reducing nervous system inflammation.
I still have a really long road ahead but this is one area where I have shown improvement. How nice to sleep!
EDIT: Correct #3 from dilantin to DIFULCAN, the anti yeast med.
[ 04-24-2011, 10:53 AM: Message edited by: dsiebenh ]
Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
Oh thx a lot!!! This sure sounds encouraging... Razzle, I have just started exploring this RSD possibility (i didn't even know it existed but the more i read about it, the more it sure sounds like it should apply to me..:-) What treatment did help to put it in remission?
Posts: 723 | From Montreal | Registered: Oct 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I had spasticity as well. I was misdiagnosed with MS. It completely went away after a couple years of abx therapy. Starting to creep back in now that I've had over 6 month break though.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
Also, how do you differentiate RSD form nerve pain that we as lymies experience, as well as Lupus or RA patients for example... I just don't get this...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I edited my original post above to change #3 from dilantin to the correct drug DIFULCAN. I believe this drug has had the greatest effect of my spasticity.
Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
Thanks dsiebenh, yeah some people have told me about diflucan too, i'll check inot tht... How are you doing MS wise now?
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I think RSD is lyme gone into the microglia in the nervous system. That is from my experience.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I don't think all RSD is from Lyme. However, I do think Lyme can be a contributing factor to the development of RSD.
The reason I feel this way is because I got RSD in 1997 and went into remission in 2001 without the use of anything that helps Lyme (I did not know anything about Lyme at the time)...in fact, I was on Prednisone for half of the time that I had RSD. I do not think the exercise and Prednisone would have helped as much if the RSD had only been caused by Lyme.
There are some who believe RSD is caused by reperfusion injury also... So there could potentially be multiple causes of RSD.
Nerve pain is nerve pain, so I think the only way to tell what is causing the pain is to observe the pattern of the pain.
My RSD pain was constant 24/7/365 and always occurred in the exact same places in my body (the only variation was with pain intensity), whereas my Lyme pain comes and goes and moves around to different places in my body (and also has varying intensity levels). I am also diagnosed with Lupus, but I do not think it is really Lupus but rather a Lupus-like set of symptoms caused by Lyme...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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quote:Originally posted by Shahbah: Thanks dsiebenh, yeah some people have told me about diflucan too, i'll check inot tht... How are you doing MS wise now?
Still as bad as ever, walking poorly, hands numbish, BUT I just started the difulcan and it seems to me to show great hope. Just being able to sleep semi-normally is in itself a miracle.
And I do not know whether to attribute this to the difulcan or not, but... yesterday I went to friend's house for Easter dinner. I ignored all my dietary restrictions that reduced my inflammation - I had bread, dairy, tomatoes, potatoes. I expected to wake today totally inflamed, and I didn't care. But guess what - my inflammation level is "normal". How can this be? Difulcan or is something else finally working? My money is with the difulcan.
Dave
Posts: 252 | From NJ USA | Registered: Mar 2004
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chiquita incognita
Unregistered
posted
Spasicity:
Arnica is a muscle relaxant. There is *no!* other product on the market even nearly as good as the Weleda Arnica Massage Oil. Other arnica products, in my experience, just don't work. This one works incredibly well and is a very helpful pain manager too. I've seen people who couldn't get out of bed, be out of bed within hours after applying this product. NOTE: Arnica is mildly toxic if taken internally and is for external use only, not for internal use. No toxicity if used externally, so long as you do not use it on broken or abbraded skin (you don't want it soaking in to the capillaries). If it does not soak in to the capillaries, then there is no concern. IT also is not dangerous if it does, just not desireable.
B6 deficiency can cause muscle spasms
Cholesterol blockages can cause spasms, get your cholesterol checked
Of course lyme infections can cause it
Possible toxicity stored in muscles may contribute. Detox therapy and massage may both help to release toxins, and epsom salt baths.
Magnesium is a muscle relaxer, so are epsom salt baths because of the magnesium in the salts
Valerian, wild yam herbs are both muscle relaxers, so is cramp bark (mostly for the uterus)
Kava Kava can help pain but be careful if you have liver issues. If yes then avoid the herb. Not for long term use, but very calming and also helpful with pain to some extent, because of the GABA binding with the brain and the muscle relaxing response that comes with it. CAUTION: Do not mix with other drugs that increase GABA uptake in the brain such as zanax et al. Ask your doctor or pharmacist about drug-herb interactions.
Ironically, walking on a muscle spasm can release it. Exercise helps.
I agree with the food allergy information above. Cut back inflammatory foods such as meat, dairy, anything you are allergic to, sugar is the worst contributor along wtih food allergies, followed by meat and animal foods (I am not vegetarian, fyi).
Try hydrotherapy. Long, long soaks in hot epsom salt baths, try minimum 45 minutes if not longer, up to 90 minutes, with strong salt dosage. I use about 3 heaping handfulls per bath. Do this frequently, daily if necessary with spasms to remove any toxins.
Baking soda in the bath is a PH neutralizer and may help *a lot!* too. Use about 1 cup per bath. This removes any lactic acid from the muscles and thus helps the muscles to relax. In fact after I injured my back and was in very severe pain, almost couldn't move, my chiropractor tipped me off to this and it really, really works. A friend with a whiplash injury said she emerged from the baking soda bath and was forever so much better thereafter. You can do these a few times per week, or daily during crisis periods. I wouldn't advise it daily as a routine, but for crises it would be excellent.
The above information has not been evaluated by teh FDA and is not intended to diagnose, prevent or cure any disease. Drugs and herbs may interact, talk with your doctor.
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