trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Hi everyone,
I seem to have come to a roadblock with some of my treatment. One thing I have noticed over and over again throughout my medical mystery tour is that my muscles do NOT react like they should.
They have too much tension, they hold on and do not relax after being "triggered" and they spasm. I know this is typically a sign of mag deficiency.
I can not tolerate mag citrate as my colo-rectal surgeon believes it literally eats away at the lining of the rectum. (sorry should have warned you, huh?)
I have tried the magtabs by niche, but they dont do squat. I soak in epsom salts every night.
What else can I do? My LLMD isnt ready to try shots and says they are very dangerous and can cause serious heart problems.
Is there something else that could be attributing to my muscle reactions besides magnesium?
Thanks for all your thoughts, trails PS--i am not actively treating lyme right now with any medications or alternatives besides body/mind work.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I would suggest IV and IV Mag - they pretty much changed my life.
I 'believe' there is research out there supporting the theory that once you are deficient, no amt of orals will bring you back to normal levels.
I could not get rid of the muscle lumps until I did a few IV's supplemented by weekly IM. I've been giving myself weekly IM shots for a little more than 2 years now. And have been off abx almost 3 yrs. No relapse.
Would your LLMD be more comfortable testing your RBC magnesium count first?
You might also get more benefit from the epsom salts if you add baking soda - when you soak in epsom, you deplete your potassium.
1 cup of baking soda (to 2 cups epsom) will balance the soak. I too could never quite understand why I would end up with foot cramps after soaking in epsom until this was pointed out to me.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2257 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Trails,
I have your same problems with my muscles. The muscles in my back are so tight, my new pain specialist was shocked when he felt my shoulders. I can't even tolerate acupuncture, because my muscles spasm around the needles.
In the past, Flexeril really helped me. But I stopped being able to tolerate it. I basically couldn't wake up on it after a while.
I recently started Zanaflex and it seems to be helping. My muscles are definitely more relaxed, even though I still have pain. I'm going to start physical therapy soon, and I hope it will help since I'm on the Zanaflex.
Yoga makes a huge difference. I have much more stiffness if I don't do yoga 3-4 times a week. When I get out of the habit, it's really hard to get back in. It causes a lot more pain and stiffness at first.
One doctor had me take magnesium malate. He said it's the easiest magnesium to tolerate. I've found one brand on Vitacost.com.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I have been having muscle cramps in my calves upon waking in the morning, have to massage them to get out of bed.
Increasing magnesium alone (orally) didn't help.
A Lyme friend said increase potassium. So I bought a supplement of calcium, magnesium and potassium and the spasms are almost completely gone. Her husband (non-Lymie) had muscle spasms in the calves and his regular doctor said potassium.
Do not take lots of potassium if you have kidney problems.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Julie---thank you! I will contact my LLMD about testing my RBC mag. I know mag tests are not always accurate---(i have always tested within range)is the RBC count of it more accurate? He might be more ameanable to doing IM this time around since I have been to several docs and been doing PT with biofeedback for months and everyone agrees there MUST be something underlying that needs addressing. Also--thanks for the heads up on the epsom/baking soda--Duh me, always wondered why folks used the baking soda part.
Aniek---yeah, flexeril. That stuff isnt fun on your digestion. Talk about a road block.
Yoga is helpful to me if I can tolerate it---lately I cant, it is too difficult. Body scans and meditation are all I can do and some Chi Qung moves. Just stretching my back very very very slowly like in the sun salute, sends the whole thing into massive spasms and I cant breathe. now THAT, I tell ya, is not fun at all.
Jill E! my surfer girl! how are you doing? Thanks for the seconding of potassium opinion. What would constitute kidney problems--do you know? Now that I have half of one of my ureters and my bladder is hitched to my psoas muscle, but my kidneys do function fine. hmmmm....
thanks you guys! up for anyone else to chime in? trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I have this too trails.
I went to PT and while it did help some, she told me that my muscles were very very tight. She blamed it on the lyme
I do stretches daily, sometimes they help sometimes they dont.
I wish i knew what the cause of this was too.
Ive been reading the thyroid can also cause problems with stiffness.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Trails,
I take high doses of magnesium and vitamin C. Nothing is blocked in me with those. I'm actually too regular if that's possible.
For me, I think it's the Vitamin C more than the magnesium. I take 6000 mg a day.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Magnesium and Complex B and b12-b6 vitamins helped me alot.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
HI Trails. I have wondered about you and had hoped you were healing.. sorry about the muscles..hugs..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
It is called spascity in MS...I've got lyme induced MS, baclofen is used for that.
I freaked first time I used balcofen... body became falcid. Apparently I was using the spasms to function for years. Brain & body muscles didn't know /remember what it was like to be truly relaxed.
Baclofen is a nervous system relaxer so when I have lower back pain still take flexeril. Balcofen does make sleeping more restful.
I'm on low dose 10mg when I need it. For me makes movement easier.
Yes still do mags, and B vitamins...they just don't help enough at this time.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Trailsey!!!
I got nuthin', but it's so wonderful to see your name in print again!!
How are your shoulders? I remember those were really bad in the past... perhaps overshadowed by four million surgeries?
How 'bout plain ole electrolytes? Like tossing down some Gatorades? Last I recollect you're about the size of an average feather. Maybe you need more vitamins and aren't hydrated properly? Guesses only.
Hugs at you,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
aw geez, it is nice to come back to such wonderful folks!
cant---how you doing? I got even more diagnoses that are similar to yours. we should chat one of these days we have too much in common -- maybe we should find out what good things we have in common eh? I so hope you are feeling better.
Aniek---yes--that vitamin C will keep it flowing! Thanks for the reminder
Hi tree--- thanks for letting me know what helps you!
fraktured....hmmm.....tequila....yum!
lymemom---was "down the shore" and thought of you and hoped you and your family are doing well!
DMC---thought baclofen was a muscle relaxer/pain reliever.....will re-check into this.
michelley!! so good to see you too. knock on wood the shoulder isnt the bad part....but remembering that the shoulder has come and gone and causes some trouble but nothing like it was is good for me. It is good to rembember everything changes---ALWAYs.
thanks you guys---I have lots to chew on here, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Trails,
The potassium/kidney thing isn't an issue unless you have elevated BUN or creatinine on blood work. I only know this because my dad has medication-induced kidney problems, then became an acute Lymie, and we have to be careful with meds, supplements, etc. in terms of kidneys.
Hope you do better soon!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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