LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Muscle stiffness anyone?

 - UBBFriend: Email this page to someone!    
Author Topic: Muscle stiffness anyone?
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346

Icon 5 posted      Profile for disturbedme   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Anyone else have extreme muscle stiffness?

I do have joint stiffness as well (but that usually comes and goes), but what I usually have every single day is muscle stiffness, which is usually the worst in my calves and leg muscles.

It's so hard for me to walk up the stairs because my calf and thigh muscles are so stiff they lock up on me and I have to pause many times on the way up the stairs because the muscles seem to lock up from the stiffness.

Sometimes doing something as simple as flexing my calf muscles a certain way triggers the muscle and it becomes so stiff it's hard to unflex my calf or leg at all because it is 'stuck' or locked that way because the muscle is so stiff.

Anyone else have this at all? I looked up muscle stiffness in the search here and only saw one other post about it. Makes me wonder if it's not a very common symptom?

Thanks!


And before anyone suggests I take magnesium - I DO! [Razz] And magnesium isn't a very big help with many of my symptoms. Just so you know.

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
c3mom
LymeNet Contributor
Member # 16412

Icon 1 posted      Profile for c3mom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Disturbed,
I had muscle tightness a couple of years ago. At the time I was waiting on an MS dx.

It was to the point where I had to shuffle my feet to move. It went away until last week.

There was a thread about nystatin. About 4-5 days after taking Nystatin my calves and thighs would become stiff.

It wore off in a couple of hours. No one besides opus28 had problems.

Also a few years back I had severe cramping in my calves. Maybe that was Mg related?

C

Posts: 262 | From ohio | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, I know about this all too well. [Frown]
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Slaba
Junior Member
Member # 20790

Icon 1 posted      Profile for Slaba     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just started to get leg stiffness recently. I was on Nizoral and Nystatin for about six weeks. Nizoral for three days and Nystatin four days. Very weird and scary. However, the yeast meds have returned me to symptoms that I had at the beginning stages of first contracting Lyme. My LLMD said this is great news because the old resilient Lyme have been hiding in the yeast to survive. Now, they have nowhere to hide and that's why I feel horrible right now. I start IV abx today to get them. Wish me luck.
Posts: 1 | From Cranston, RI | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346

Icon 1 posted      Profile for disturbedme   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Anyone else? Doesn't seem like a very common symptom strangely.

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
Aniek
Frequent Contributor (1K+ posts)
Member # 5374

Icon 1 posted      Profile for Aniek     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have muscle inflammation which causes my muscles to be very tight. For me, it is mostly upper back. I do get front thigh too.

Magnesium helps. It doesn't get rid of it, but it is worse when I don't take a lot of magnesium.

Anti-spasmadic medications works as well. I took Flexeril for a while and it was the best. I took 30mg at bed (I had to build up slowly, starting with 5 mg because it causes major fatigue). I eventually had to stop because it was impacting my autonomic nervous system and I couldn't wake up in the morning.

I then tried Zanaflex which worked for a while, but it made me too tired.

Then I tried skelaxin, which causes less fatigue, but doesn't work as well.

But all of them are worth trying for yourself to see if they help.

--------------------
"When there is pain, there are no words." - Toni Morrison

Posts: 4711 | From Washington, DC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
yes, i have it. there are days when i get on the sofa that i can't get up without bending over and walking like i'm over 100 years old.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Bugg
Frequent Contributor (1K+ posts)
Member # 8095

Icon 1 posted      Profile for Bugg     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, it's been a horrible symptom for me, even after treating with long-term IV and oral abx and HBOT....

In my humble opinion, the stiffness of the muscle is made worse by the neurological damage of lyme....getting the inflammation under control (although not completely) has helped me the most.

Here's what I've done:
1) IV and IM mag sulphate (I had low RBC levels)...then long-term MagTabSR(oral)
2) make sure Vitamin D levels are in the upper limits of normal....Vitamin D helps with inflammation and muscle pain and helps regulate the immune system
3) high dose pure pharmaceutical grade...I repeate "pure grade" fish oil at HIGH DOSES(not the lower doses recommended on the bottle)...it's a powerful anti-inflammatory....don't take higher doses without talking with your doctor and especially if you are on blood thinners....
4) NAC with other anitoxidants (go very, very slowly if you try NAC as it can make people feel worse at first).....
5) B-6 and B-12

I think it just takes awhile even after treatment for the nerves/muscles to heal from the damage of lyme...

Sorry you're hurting....

Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
All I know is if I can't get rid of this symptom, I don't care to treat Lyme. It's my number one nightmare in my life. I can't work because of it, can't enjoy things, and am in discomfort. I am very disappointed to hear IV Abx didn't even help you Bugg with this one.

I don't see many Lyme people say this is the number one issue. THerefore, I think I may have another issue outside of Lyme causing this.

Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
ukcarry
Frequent Contributor (1K+ posts)
Member # 18147

Icon 1 posted      Profile for ukcarry     Send New Private Message       Edit/Delete Post   Reply With Quote 
This is very much one of my symptoms [especially first thing in the morning] and is worse if you are low in magnesium.

Recently, although I've been in a very bad way in other respects, I have noticed far less stiffness and arthritis and am wondering whether amoxicillin is responsible.

Posts: 1647 | From UK | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
thanks disturbed for this post..i have it too.
Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Bugg
Frequent Contributor (1K+ posts)
Member # 8095

Icon 1 posted      Profile for Bugg     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi-

I wanted to add that D-Ribose helps me with the stiffness/soreness as well. I take the amount recommended by Dr. Teitlebaum....3 grams 3x a day....In his study with D-Ribose and CFS, it took the CFS patients 12 days before they felt any improvement...After three weeks, he said to reduce the dose....

I know the following is going to be an obvious statement but I thought it was worth posting. In the Journal of Rheumatology, it says that the amount of MORNING stiffness a person experiences is a good indication of the amount of inflammation that person is dealing with....

I think giving our mitochondia what it needs is important as well...if your body doesn't properly produce and utilize energy, it can exacerbate the pain, soreness, and stiffness (lactic acid feeling) in the muscles: anti-inflammatory of choice, omega 3, B vitamins, CoQ10, l-carnitine, D-ribose, and magnesium....

Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
dmc
Frequent Contributor (1K+ posts)
Member # 5102

Icon 1 posted      Profile for dmc     Send New Private Message       Edit/Delete Post   Reply With Quote 
try Baclofen... It is an RX used for spasicity -Muscle stiffness. It is a nervous system relaxant. Used in MS too for when the muscles lock.

Just don't let your body become dependant. (crave it in order to function). I only use it when I'm dealing with extreme locking of my legs & lower back.

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
Faith6
LymeNet Contributor
Member # 14072

Icon 1 posted      Profile for Faith6     Send New Private Message       Edit/Delete Post   Reply With Quote 
For sure....the stiff old lady feeling!!! I've had this off and on(mostly on) for at least 25 years. Hot showers & baths, massages, etc. help me lossen up some.

When I'm on antibiotics for Lyme it has gone away, but within weeks of getting off them it starts to come back along with many other symptoms.

--------------------
"His faithful love endures forever." Psalm 136

Posts: 189 | From MN | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
carl
Member
Member # 16126

Icon 1 posted      Profile for carl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Disturbed,

Calf pain/stiffness and Achilles tendon pain/stiffness is a constant for me.

Mine is worse when I first go to stand up---fells like tendons and muscles are goind to snap.

Also lately when I stretch my legs lying in bed my calves cramp up (Charlie horse).

Carl

Posts: 67 | From south jersey | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
nomoremuscles
LymeNet Contributor
Member # 9560

Icon 1 posted      Profile for nomoremuscles     Send New Private Message       Edit/Delete Post   Reply With Quote 
Me too.

Calves and shins,very bad. I can't even gently flex my calf, as it would lock up (and then when I went to stretch it, my shin would lock up).

Posts: 844 | From Eastern USA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
i've got the exact same thing Carl and NMM. WTF is wrong with us? I'm not convinced this symptom is Bb. Too many others here do not have this.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
scupscake
Member
Member # 18844

Icon 1 posted      Profile for scupscake     Send New Private Message       Edit/Delete Post   Reply With Quote 
The lyme settled in my tendons and made much of my upper body stiff. And when I herxed, it would come back with the slightest move. I got an Rx for lorazepam to take at night so that my muscles would fully rest when I slept. And massage therapy helped, as long as it wasn't too deep of a massage. Good luck to you.
Posts: 17 | From Rhode Island | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
thejoje
LymeNet Contributor
Member # 19976

Icon 1 posted      Profile for thejoje   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have killer muscle cramps in my calves. When I switched abx and temporarily went off all meds, the cramps went away.

I'm wondering if it's some sort of a herx.

--------------------
When we are no longer able to change a situation---we are challenged to change ourselves.
(Viktor Frankl- Holocaust survivor)

Posts: 460 | From Maine | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
MarsyNY
LymeNet Contributor
Member # 7766

Icon 1 posted      Profile for MarsyNY     Send New Private Message       Edit/Delete Post   Reply With Quote 
DBDme,

Just saw this, this is my #2 after fatique/brain fog. No joint pain, but this crazy stiffness mostly in the legs and always in the hands. The thigh musscles and when I bend down I cannot get up, there is no strength? I feel like the tin man.
The fish oil, mag, msm etc. nothing helps (just started the d-ribose)

I thought this was just simply the body getting older but to answer someone above it all went away
each time on amoxicillin. (presently thats not working)

I ride my bike, I swim it just gets worse and my thigh muscles feel like I just did the Tour de Hamptons when I only went (1mile RT) to the Post Office.

The stiffness in my hands has been a constant thruout- Cannot make a fist, this typing thing is strenous as my fingers just don't bend (have to type like someone who just put on nail polish.)

I feel like a I have 2 popsicle sticks for legs and you know how hard they are to bend.

Going to see a rheumatolist tomorrow, wonder what he'll say. This is not arthritis. Do the spirochetes land in these spots?

PS. Mine lock up on the way down the stairs, a person could fall....

Posts: 465 | From New York, NY | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
Buster
LymeNet Contributor
Member # 19472

Icon 1 posted      Profile for Buster     Send New Private Message       Edit/Delete Post   Reply With Quote 
It is my second worse symptom. I have trigger points in all my muscles that wont go away. My muscles are constantly squeezing.
Posts: 458 | From Miss | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Bugg
Frequent Contributor (1K+ posts)
Member # 8095

Icon 1 posted      Profile for Bugg     Send New Private Message       Edit/Delete Post   Reply With Quote 
Anyone here try Curcumin for the muscle stiffness? I'm going to try to restart it...I have to take it at night before bed as it leaves me feeling "zoned out/spacey"....

The reason I ask about the Curcumin as I was reading in a diabetic forum that some diabetics were using it for their stiff muscle/heavy legs feeling...(as you know it's a strong anti-inflammatory)....

I'll let you guys know if I see any response from it....If I ever figure out what the hell causes this/a solution I promise to post it for everyone!!! The things I posted above only mitigate the stiffness but certainly don't get rid of it completely....

I'm sure some of you guys have had the "my ankles are going to snap" feeling when you first wake-up....that's fun in the shower isn't it!!!

For what it's worth, I'm a neurolyme patient...had the severe cognitive dysfuction...couldn't read...etc....Now all-over stiffness and mental/physical fatigue seem to be my two worst symptoms after treating for years....

Wish I knew what caused the stiffness....Wonder if there's a "maintenance abx" that keeps it at bay?

Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
MarsyNY
LymeNet Contributor
Member # 7766

Icon 1 posted      Profile for MarsyNY     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bugg,

You've taken all the greatest supp's and even HBOT,Iv antibiotics, oh man.... Is the cogitive function better? You sound like you're on the ball with your treatment. The cognitive decline I feel makes this almost impossible.

Snapping ankles in the morning. My boyfriend used to laugh to watch me walk in the morning. I would always say I feel like I have no ankles or feet, Im like walking on stubs.. Its mind boggling.

Wish I had the energy and the brains to do more research and find the answer to at least one lyme related mystery.


I was thinking of going back on Zyflamend which contains tumeric. I wanted to see if the D-ribose helped first but apparently it is having the opposite effect now and making me sleepy.

[ 08-02-2009, 11:57 AM: Message edited by: MarsyNY ]

Posts: 465 | From New York, NY | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
Bugg
Frequent Contributor (1K+ posts)
Member # 8095

Icon 1 posted      Profile for Bugg     Send New Private Message       Edit/Delete Post   Reply With Quote 
MarsyNY--

IV Rocephin was a God-send for me...It brought my brain-functioning back....resumed reading, analyzing, language, math problems....memory improved....I was like an Alzheimer's patient before...didn't know where I was...would start spontaneously crying for no reason..it was hell...

My cognitive issues now really stem from just mental fatigue....trying to correct that with mitochondrial support....(and hopefully the Curcumin)...

Please note that tumeric and curcumin are not exactly the same...you might want to see my most recent post in Medical about a research study by UCLA re: curcumin and vitamin D.....Regardless, I've heard of others who've responded very favorably to Zyflamend (greatly helped their inflammation)....

As a side note, if I take certain anti-inflammatories during the day like Curcumin or high dose fish oil or even D-Ribose, it can make me feel sleepy....That's why I take the D-Ribose with my Co-Q10 and NT Factor to counteract the sleepiness...

I try to take the Curcumin or higher doses of fish oil at night so I don't struggle with the sleepiness..

Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
MarsyNY
LymeNet Contributor
Member # 7766

Icon 1 posted      Profile for MarsyNY     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks Bugg, wish I could try the Rocephin but my Dr. tells me my insurance wont pay for it.

Ill take a look at the curcumin. I do take Q10
Not familar with NT Factor. The curcumin comes from the tumeric right?

Will report back what the rheumatologist says when I get back at the end of the week.

Posts: 465 | From New York, NY | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
drewby
Member
Member # 15253

Icon 1 posted      Profile for drewby     Send New Private Message       Edit/Delete Post   Reply With Quote 
Muscle stiffness and extreme cramping are some of my worst symptoms next to what seems like permanent Light headedness brain fog and Fatigue.

I wake up EVERY morning as if I were in an auto wreck during my sleep. My Skeleton hurts and I walk to the bathroom like the "Hunchback" I have to push myself out of chairs, etc.

Once I get two cups of coffee, a provigil and some Sudafed/Ibuprofen in me, I am fairly normal for a few hours during the day except for feeling like i will pass out all the time.

Leg Muscles(quads and Calves) are really bad
TRiceps muscles cramp from the littlest movement.
I actually get severe cramps in the muscles in my rib cage if I turn too quickly.

I am temporarily off ABX and just doing B-12 self injections and provigil for extreme fatigue. I am drnking a gallon or so of Water/Gatorade per day and taking a little extra sea salt with it.

One night after a day on a boat in rough water, I woke up at 3am with the worst pain I have ever felt. Both Quad muscles were seized and cramped. I was practically cying. i have never felt anything like it and i have broken my arm, hands, etc. This was worse.

Eventually I got myself out of bed and "walked it off" I believe it was from stabalizing myself trying to stand up on the boat all day when it was rockin in the swells.

I went untreated and undiagnosed for 5 years at least. My Dr Thinks some symptoms may not clear up at this point. My abx treatment has not been agressive o my net step is to crank it up with IM or IV Rocehpin combined with something else. Although it seems many of you have done that to no avail.

Its getting to the point now that nobody asks me how I'm doing anymore. Not even the girlfriend. I don't appear very sick at all. They think I should be cured by now.

Posts: 29 | From New York | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
Bugg
Frequent Contributor (1K+ posts)
Member # 8095

Icon 1 posted      Profile for Bugg     Send New Private Message       Edit/Delete Post   Reply With Quote 
Drewby--My heart goes out to you...I know you're really suffering....You absolutely can get better with treatment...I was in HORRIBLE shape and long-term abx treatment definitely helped...

As for muscle stiffness, for years, I could barely walk through the grocery store or stand in a line...My legs would "scream" at me...

I have chosen to not take any more abx...antivirals etc... for about a year now...Yes, I still have muscle stiffness/tendon stiffness but it has definitely improved....

I can walk a mile/walk through the grocery store/walk through a mall...things I could not do for years due to lack of stamina in my legs...

I think the key is really finding a way to fight the hell out of the inflammation in your body....As my LLMD said, it's like you have a raging forest fire in your body that you've got to fight like hell....

In my humble opinion, for many, small intermittent doses of anti-inflammatories won't do it...

Some use Zyflamend, some Mangosteen, some high doses of Vitamin D, some curcumin, some high doses of fish oil....(others may come along with recommendations for anti-inflammatories...)....need sufficient doses of these...

I just started Curcumin with fish oil and fat and I can already notice a difference in my muscle stiffness... Curcumin and Zyflamend are both hard on my stomach (acidic)...but taking Curcumin with fat and fish oil helps .... I also get plenty of Vitamin D and stay on the magnesium...

I use CoQ10 and NTFactor Energy for energy....D Ribose to help with the soreness....

Keep fighting....I truly believe you can make progress...it's a marathon...

[ 08-05-2009, 10:49 AM: Message edited by: Bugg ]

Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270

Icon 1 posted      Profile for sutherngrl     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have severe muscle stiffness. Worse in the mornings or after I sit for a few minutes. I walk like I'm 90 years old. Once I get going its not so bad, but sit down again for even 15 minutes and there it is again when I get up and try to walk.
Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
ya'll really sound so much like me...i hate you all have this too but, boy i was thinking i was a poster child for "invisable ms"...anyway, so sorry for everyone but, THANK YOU>
sincerely, christine

Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
wtl
LymeNet Contributor
Member # 19883

Icon 1 posted      Profile for wtl     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by seekhelp:
i've got the exact same thing Carl and NMM. WTF is wrong with us? I'm not convinced this symptom is Bb. Too many others here do not have this.

Seek - I hear you loud and clear, all along. My wife has exactly everything you described. Even she is only on abx for four months, which I know many will tell me to hang in there for a long haul, I am starting to feel desperate. I am not a non-believer, I am just a doubter.
Posts: 822 | From midwest | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
also mine is "cyclical" comes and goes for bouts...went away for months and months..then i got off treatment and went on "baby doses" and then whamo..back to the beginning again.
Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Peedie
LymeNet Contributor
Member # 15355

Icon 1 posted      Profile for Peedie     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have it too. Never took Nystatin. It's been a symptom since the beginning. Like sutherngrl, I walk like I'm 90 in the morning and also before bedtime sometimes.
Posts: 641 | From So. CA | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
LindaS
Member
Member # 20251

Icon 1 posted      Profile for LindaS     Send New Private Message       Edit/Delete Post   Reply With Quote 
You know that our symptoms will be very different because our immune systems are unique and handle the assault of bB and co-infections very differently. bB are opportunistic little creatures as well, they'll go where you have an injury or weakness.

My most aggravating symptom was muscle pain and fatigue. It felt like a mild flu all the time. I've been on abx and supplements including magnesium malate, vit D, Pro DHA (fish oil) for 3 months and the pain in my arms is gone. I still have pain elsewhere but these are very complicated organisms and it will take time.

--------------------
Linda

Posts: 39 | From Lexington, Virginia | Registered: May 2009  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
i hope more people chime into this post
Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622

Icon 1 posted      Profile for lymeinhell     Send New Private Message       Edit/Delete Post   Reply With Quote 
All this dicussion and not one mention of Flexeril has me baffled. It's a godsend for muscle stiffness. And so is sleeping on an air mattress or a Sleep Number bed (if you can afford one).

Just a quick note on magnesium - if you are low, ORALS will NOT bring you back to normal levels. The body cannot absorb enough from orals, and most of it gets flushed down toilet.

IV Mag supplemented by IM Mag is what is called for. So all those whopping doses once or twice a day won't do it. If you can't do IV or IM, trying taking a small dose (50mg) every couple hours of the day so that you get your 800mg. The timing and dosage and delivery method is extremely important.

--------------------
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  |  IP: Logged | Report this post to a Moderator
Peedie
LymeNet Contributor
Member # 15355

Icon 1 posted      Profile for Peedie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Flexeril is pretty heavy duty stuff. I --for one should try to keep the Rx meds to only what is necessary. Already take small dose of Ambien so I can sleep and Vicodin when Advil will not do the trick (only when in pain).

Along with the vitamins, supplements and abx.

IM Mag could be the answer - I'm willing to try it. How much and how often?
-p

Posts: 641 | From So. CA | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
yes, they put me on flexeral for a week..oh my gosh i was like in lala land...i hat script meds other then the abx...i really have bad reactions but, thanks for the suggestion.
mag IV...that is interesting..where do we get that?
c

Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
yes, they put me on flexeral for a week..oh my gosh i was in lala land...i hate script meds other then the abx...i really have bad reactions but, thanks for the suggestion.
mag IV...that is interesting..where do we get that?
c

Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Eliz428
Member
Member # 21509

Icon 1 posted      Profile for Eliz428     Send New Private Message       Edit/Delete Post   Reply With Quote 
This was something that interested me when I read it. Yes I have the same thing. http://lymemd.blogspot.com/2009/07/babesia-questions.html

Heres' the quote that got my attention.

"Many clinical signs and symptoms have been ascribed to Babesiosis. In my practice the primary symptom is sweating. Patients have night sweats, sweats after a hot shower, day sweats or chills and flu like symptoms which recur cyclically. A secondary feature is muscle pains in preference to joint pain."

I love his Blog, it is so informative

Posts: 43 | From Upstate NY | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Peedie
LymeNet Contributor
Member # 15355

Icon 1 posted      Profile for Peedie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Eliz428 - thank you for the link to LymeMD regarding babesia. I tested neg, for babesia, however I plan to talk to my LLMD regarding a trial of Malarone and Artemsin.

Has anyone here had any bad experiences on this combo?
-p

Posts: 641 | From So. CA | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
Bugg
Frequent Contributor (1K+ posts)
Member # 8095

Icon 1 posted      Profile for Bugg     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just wanted to emphasize the point that you can have "muscle stiffness" from lyme disease without having to be coinfected with babesiosis....

Also, lyme may INITIALLY present (along with other symptoms) as joint pain rather than diffuse muscle pain/stiffness. However, years later, even with treatment, the patient may no longer have the "joint pain" but rather, be left with residual muscle stiffness/aching in the muscles....

We don't know definitively whether this is from: inflammation, residual toxins, neurologic damage, active infection, immune system dysfuction, mitochondrial damage or a combination of the aforementioned....

Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
nomoremuscles
LymeNet Contributor
Member # 9560

Icon 1 posted      Profile for nomoremuscles     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had to have a blood draw this AM. Someone drove me. I walked from the handicapped spot to the building, hobbling and shuffling so that I wouldn't push off my toes or cause my calves flex.

Still, my calves, shins, and feet bottoms are spazzing out now. Reaching for palliative meds.

Posts: 844 | From Eastern USA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Buster
LymeNet Contributor
Member # 19472

Icon 1 posted      Profile for Buster     Send New Private Message       Edit/Delete Post   Reply With Quote 
One LLMD I saw travels around the country speaking on babesia. He says that he is noticing patients with alot of muscle pain, sweating, feeling of heat, sleep disturbances, fatigue, ect that are testing positive for babesia, especially the wa1 test for the mid west
Posts: 458 | From Miss | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
what is the bab treatment?
buster, i am from louisiana originally.
i was a field bio. there and that is where i probably got the lyme bug...
where in miss are you?
c

Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
TO LIFE
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
Dear Folks,

I have this SX as well. I have felt even at times my muscles were super glued together.

I test neg- for babs.

In my case it is someking of parasite, what our your thoughts?

IP: Logged | Report this post to a Moderator
Buster
LymeNet Contributor
Member # 19472

Icon 1 posted      Profile for Buster     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by TO LIFE:
Dear Folks,

I have this SX as well. I have felt even at times my muscles were super glued together.

I test neg- for babs.

In my case it is someking of parasite, what our your thoughts?

What made your doctors think it is a parasite? Just curious, my LLMD is not happy with my progress and is worried I may have a stealthy parasite or something in my blood.
Posts: 458 | From Miss | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Peedie
LymeNet Contributor
Member # 15355

Icon 1 posted      Profile for Peedie     Send New Private Message       Edit/Delete Post   Reply With Quote 
well, I supposed for me this muscle pain could have developed from joint pain issues as Bugg mentioned. I had a couple years of swollen and painful knees (foot problems also) which were blamed on tennis. This prior to any knowledge of Lyme. It was the unbearable leg pain which had no possible explaination - which finally determined Lyme Disease.

I'm on the west coast - in a coastal area. The article, I noticed was from a East Coast doctor.

Is babesia an issue on the west coast?
Is there any harm in taking malerone as a trial?
Can there be false neg. results when testing for coinfections?

I had the B. Microti Antibody G/M panel done at Igenix.

Posts: 641 | From So. CA | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
my "tightness" seems to come from my left hip joint..i always feel sort of crooked in my pelvis..i did rotate it in HS distance running but, since this lyme hit it is so much worse...i think it does originate there.
also maybe from the neck and into my arm...i get it on the other side too but, not nearly as bad as the left and the face pressure is likely from the jaw.
it is all so frustrating and scary to me

Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
thanks amberini....
yes, i have the clunking BIG TIME!
i rotated to the right which is how i pronate..which causes the left to be further up into the pelvic area and cause worse symptoms on that side.

i am hard headed though and continue to run despite the pain and have for my whole life, as i rotated it at age 17 and i am now 35...

i AGREE totally that the lyme settles in the WEAK spots.

i have to say my whole left side is worse though especially in my face.
and it sounds like many of us have worse symptoms on the left side of the face...

and yes, i totally get the "rigid" description of your hip.

i do feel like massage helps me though.

AMBER, do you get calf pain like on the outside of the calf and into your pinky toe b/c of the hip displacement?

thanks again to all, christine

Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
MarsyNY
LymeNet Contributor
Member # 7766

Icon 1 posted      Profile for MarsyNY     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm just back from my visit to the Dr. he wants me to try some prednisone for 10 days.

I've had an EMG and nerve conduction studies last year, all was normal.

Any thoughts on the prednisone?

Posts: 465 | From New York, NY | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
thanks for that..amberini
Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
i want this to bump up to the top again!
Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
chorella...seems to help me with the tight muscles too.
Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
I got rid of mine when I went on clindmycin 150mg 4x/day, then dropped to 2x/day after a month.

Also, doing stretching in the pool really helps.

Posts: 13069 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
greenbow
Member
Member # 21463

Icon 1 posted      Profile for greenbow     Send New Private Message       Edit/Delete Post   Reply With Quote 
what is clindmycin and what is it for?
Posts: 94 | From ut | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
tic chick
LymeNet Contributor
Member # 9156

Icon 1 posted      Profile for tic chick     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had to bring this post up for more info on the topic of muscle stiffness which is also my Primary sxs. I was treated for Babs but, maybe didn't get it all???

Also need to try IM Mag....anyone with thoughts on this?

--------------------
Adversity is the diamond dust heaven polishes it's jewels with. Robert Leighton

Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time all faiths welcome!

Posts: 309 | From S.E. Mass | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.