nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I suppose this is protomxzoa but I am not sure. I have recently been getting some severe cramps in unusual places like the bottoms or tops of my feet or the sides of my lower legs - not the calves or toes as you would normally expect.
I also get tightening in my shins and forearms and back muscles. Does anyone else have this?
At the same time my wrists, fingers and sometimes my elbows have become sore, especially in the morning. It isn't really bad (yet) and taking stromectol seems to help knock it down.
Protomyxzoa rheumatica - not named that for nothing, as it is believed to cause rheumatoid arthritis. Maybe that is what is happening in my joints - not sure of the cramps though.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I get spasms and cramps in my shins, tops of my feet, and other strange places, too.
But in my case, the cramps disappear when I am getting enough Water, Magnesium, Calcium and Potassium.
I don't know what, if any, infections or coinfections are associated with this, as I've seen musculoskeletal symptoms listed for all of the infections.
-------------------- -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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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I *thought* that cramping can also be associated with bartonella - I get muscle spasms/cramping occasionally despite having water/mg/ca/k on board...
Posts: 348 | From NJ | Registered: Sep 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I think it is just PR. I bookmarked that site though steve, because it gives a really good explanation of the test results.
I was not taking any drugs for several months and I guess I just have to get back on them for awhile to be sure this is knocked back.
I am not nearly as sick as I was last year when I began treatment for PR. I don't want to get back there either.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ive been concerned about a lot of this too..i have history of spasms and know what to do and why (mag, pot, cal ---skelaxin if necessary)
but these are really new and different. i am afraid doc will think i am nuts...its always something. im getting ready for surgery an i am afraid there might also be blood clots
both calves get many spots of spasm about the size of golf ball...often...if i am not taking top dose of mag, pot, cal they get worse and go into full blown spasms
they never get hot or red so i try to not think they are blood clots...but they do travel and that is scarey
i take a lot of omneprazole and that lowers mag...and has some affect...but a lot is not explained...i hope this conversation continues...im not sure why the WB link is relevant...did i miss something?
also thru this period my twitches have increased -both upper arms-i recently had rotator cuff problems, my right glut...my eyes and sometimes parts of my face...
i have not complained to a doc about this either...i dont have a LL doc now and the others only know their specialty ... im trying to get primary to refer me back to neurol
anyone else with the twitches too?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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If you buy it, start SLOW!!! Very SLOW!! Your mag deficient body won't know what to do with mag it hasn't seen in YEARS!!
ReMag.. not the RNA drops. There's another product for electrolytes that I want to try. It's called ReLyte.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
If you have protomyxzoa you SHOULD NOT TAKE MAGNESIUM because it strengthens the structure of the biofilm. In fact, you want to take something, like EDTA, that will bind with the magnesium in the biofilm to help break it down.
My cramps were much worse when I was taking magnesium, before I was diagnosed or began treatment. Sometimes, it was so bad it felt like my tendons were torn but it was in my upper thighs and back.
I understand the reasoning behind taking magnesium because it is the mineral that releases the muscle when it contracts, but if you have PR, don't supplement it.
Muscle twitching is very common with protomyxzoa.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Nefferdun,
I did not know there was an oral form of EDTA. Mostly, I've seen it used in IV chelation. Do you know a source for this?
I get it on the magnesium! I have the type of cramps, often in the feet or toes, you speak about. Awful!!
After reading about protomyxoza, I cut way, way back on the magnesium, and only used topical mag, if any, when the cramps got too horrible.
Recently, when I upped my magnesium, the cramps got WORSE, so I'm now back to next to nothing.
Hope to see an MD student of Dr. K soon to get this all more sorted out!!!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
this is so confusing...my cramps are getting worse but mag does help and they are so much worse without it...but that doesnt mean its good for me...but i really dont know how to get by without it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear lpkayak,
Dr. WA in Santa Rosa recommended taurine, 1 gm once or twice a day, to me years ago for the cramping. It does seem to help.
I also use the topical magnesium oil spray when things get too bad. Don't know if this feeds the Fry bug or not. Hey----at 4:00 am with my toes about to rip themselves off my foot, I often don't care! You can get this stuff at pretty much any health food store, I believe.
Also, LOBELIA TINCTURE---just a few drops---works for me. It has a bit of a sedative effect, so I try to keep the dose to a minimum.
Tonight, I'm cutting out all the mag supplements, and see what happens.....
Hope this helps!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
Let me warn you though, it tastes absolutely horrible - like drinking motor oil. I put it into grapefruit juice and it is still sickening. WHen I tried to just take a tablespoon without mixing it in something, I literally gagged and nearly vomited.
But it works. You can feel it in minutes. Dr. Roberts (a heart surgeon, not an LLMD) recommends it for getting rid of heavy metals.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Nefferdun,
Thanks for the link and the warning!!
I've been doing Dr. K's protocol of chlorella followed by cilantro tincture for about 2 years now. My mental clarity had definitely improved! But, my memory still sucks.
I think I'll try it out, being sure to take chlorella or DE about 30 minutes before to absorb the metals and get them OUT of the body, as Dr. K stresses!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Cilantro is good for binding with metals too. Good luck.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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