Balance Problems - Leg Weakness

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BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/14/2018 1:54 PM (GMT -6)   
Hi All!
I'm fairly new to lyme - been experiencing symptoms since August, diagnosed at the end of January. My Igenex came back equivocal for Lyme, positive for Ehrichliosis, babs, and bartonella.

My 1st symptoms were constant boat rocking dizziness, and balance problems - also a lot of visual disturbances and blurred vision. I also had a ton of anxiety and depersonalization for the first time in my life.

My legs also have become incredibly weak, and sometimes feel uncoordinated. Does anyone have this? Can anyone here relate to my journey so far?

I had brain mri, and spinal MRI and all clear. I was concerned this was MS, but 3 neurologists said no, even one down at UCSF.

It seems pretty clear it is lyme. My LLMD is confident I will beat this. Sometimes I still lose faith I'm on the right path.

My CD57 came back at 28. Can anyone tell me more about this?

I also was diagnosed with POTS last week with a failed tilt table test. I have been taking florinef and Corlanor for a couple days. Any ideas here? Thank you.

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/14/2018 2:08 PM (GMT -6)   
Welcome to the forum!

If you haven't done so yet, read through the "New To Lyme" thread at the top of the forum page.

Your symptoms are consistent with many sufferers of Lyme and coinfections.

Balance and leg weakness were my first and most concerning symptoms. I don't get dizzy, though. However, I did not have a clear mri. I have an active lesion on my midbrain that we are trying to get under control.

I'm happy to hear your LLMD has faith in your healing. Just remember, it will probably take a while. This a long distance marathon. Relax as much as you can and be confident knowing that there are and have been plenty of people in your position that are on their way to remission or are already there.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/14/2018 2:24 PM (GMT -6)   
Thank you, Hoagie.

Sending prayers that you get your lesion under control. Is it true lyme causes lesions on your brain and spine?

Did your symptoms hit you pretty quickly? I can't believe how fast they seemed to take over.

My LLMD did set realistic expectations of 1-2 years, doesn't seem that bad after being so scared not knowing what this was for 7 months. And I know 7 months is fairly quick to be diagnosed with Lyme. My heart goes out to those that suffered longer with fear of the unknown.

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 614
   Posted 3/14/2018 2:32 PM (GMT -6)   
Some symptoms came on quick. But, I statrted having symptoms shortly after the tick bite that I didn't attribute to Lyme until later. It wasn't until 14 months after being bit that I suspected lyme. But since then, it took off. I've somewhat stablized within the past couple months. But, the herxing has gotten pretty bad.

As far as the lesion is concerned.... some of the docs I've seen think I masy have had the lesion for much of life because of my history if migrainss. But it has recently become inflamed. My neurologist and LLMD believe it's lyme and co that is causing this. So, at this point, we just need to put out the fire.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 3/14/2018 2:39 PM (GMT -6)   
BrookieGirl said...
Hi All!
I'm fairly new to lyme - been experiencing symptoms since August, diagnosed at the end of January. My Igenex came back equivocal for Lyme, positive for Ehrichliosis, babs, and bartonella.

My 1st symptoms were constant boat rocking dizziness, and balance problems - also a lot of visual disturbances and blurred vision. I also had a ton of anxiety and depersonalization for the first time in my life.

My legs also have become incredibly weak, and sometimes feel uncoordinated. Does anyone have this? Can anyone here relate to my journey so far?

I had brain mri, and spinal MRI and all clear. I was concerned this was MS, but 3 neurologists said no, even one down at UCSF.

It seems pretty clear it is lyme. My LLMD is confident I will beat this. Sometimes I still lose faith I'm on the right path.

My CD57 came back at 28. Can anyone tell me more about this?

I also was diagnosed with POTS last week with a failed tilt table test. I have been taking florinef and Corlanor for a couple days. Any ideas here? Thank you.


Hi BrookieGirl - welcome to our community. I see Hoagie has given you some good information.

I also had/have balance problems, anxiety, weakness, and POTS (no tilt table test - just clinical diagnosis)

I have had many, many more symptoms ...but with treatment a lot have subsided.

Sounds like you have a positive LLMD, that's great. I hope you stick around here...there's lots of knowledge and support.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/14/2018 3:08 PM (GMT -6)   
Thanks, Girlie!

Do you feel the balance/dizziness/weakness comes from POTS or the co-infections or all?

Did you ever have vision problems? Blurriness, and things moving in your vision?

My hormones are completely low too... Is this part of lyme? I've always been incredibly healthy and active 34 year old female... all of a sudden my progesterone, estrogen, testosterone, dhea and cortisol levels are so low. Off the charts.

Anyone have any idea if this is related?

Or tailbone pain? I guess the sky is the limit on what lyme can cause.

mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 3/14/2018 4:02 PM (GMT -6)   
BrookieGirl, Really sorry about your diagnosis but am assuming it is nice to finally know what is going on.

I had the feeling for the longest time of being on a boat. Mine was not so much a dizziness but more of a constant feeling of being slightly off balance and unsteady.

The leg weakness is another symptom I had for quite a while. In addition to the weakness, my legs felt like they had heavy weights attached to them.

I have also had vision issues for a number of years that seem to come and go.

My CD57 has been like yours ... quite low. It has been on a gradual increase lately, though.

I'm assuming you are in Northern California based on your UCSF mention. Is your LLMD in the same area?

When my Ehrlichia test came back positive through Quest, prior to seeing LLMD, I was told by ID doc it had to be a false positive since Ehrlichia is only on the East Coast. Were you told the same?

I wish you the the best in healing. I have been on antibiotics for 1 year and have made much progress. Not "cured" but getting lots better. Please be prepared for a lot of lumps in the road. It is not an easy haul but doable.
Lyme CDC POS
Bartonella POS
Ehrlichia POS
CD57 30, then 12, now 64

mudshark
Regular Member


Date Joined Aug 2017
Total Posts : 119
   Posted 3/14/2018 4:24 PM (GMT -6)   
Leg weakness was one of the initial symptoms I experienced as well. Mine was intermittent and could last for a few hours or most of the day, only to be gone again for days or weeks. My legs felt like noodles and all shaky, but the actual strength still seemed to be there. Really weird. It was driving me crazy trying to figure out what was wrong.

I had balance issues as well, but didn't really notice until a doctor had me do the sobriety walk. Like Girlie mine subsided with treatment.

Glad you have a diagnosis now and can get on the road to feeling better.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/14/2018 7:15 PM (GMT -6)   
Thank you for the reply Mareish. Yes, boat rocking - not vertigo. It's almost like the ground is moving up and down while I'm trying to walk. Also my legs seem almost uncoordinated - as if I'm not sure they're going to be under me with each step. Does this sound familiar?

I can relate very much to the heavy legs - like weights, and yes - it does come and go. I never know in the morning how bad it's going to be. I used to have such terrible anxiety in the mornings bc of it, but having a diagnosis has really helped with my anxiety.

Yes I am in N.California. My LLMD is in Santa Rosa, I am in grass valley way up north near Tahoe. I never went to an ID Dr because I knew I would be dismissed. My GP admitted she didn't know much about lyme, but has been very supportive helping me get what I need - tilt table test, Xanax when my anxiety was awful...etc.

I did have a negative quest lyme test, and ordered an igenex test kit bc I just had a feeling. The only bands I had were 41 and 58, but equivocal lyme, and co infections. When I saw the co-infections I went straight to a LLMD and she said without a doubt these were positive test results. She never mentioned Ehrichliosis being only east coast.

I did have the cardiologist at the hospital tell me Lyme doesn't exist in Ca. And my positive POTS test could not be from lyme. He said I'm "barking up the wrong tree"

Is it true CD57 is only affected by Lyme? I was always afraid of MS, do my results make Lyme a pretty clear diagnosis. I still doubt my journey from day to day.

Happy to hear you're is going up!! Are you able to carry out normal day activities now?

Thank you, Mudshark!! Your message was very uplifting!! Sounds like you are making a lot of positive progress. How long have you been treating? My legs will shake some days too and I have to sit often. Praying for your continued improvement.

aphysicalwreck
Veteran Member


Date Joined Sep 2012
Total Posts : 647
   Posted 3/14/2018 8:15 PM (GMT -6)   
Just another confirmation that this is a common symptom. I also have balance
Issues and heavy legs and arms. Also intermittent.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/14/2018 8:17 PM (GMT -6)   
Thank you, aphysicalwreck. Have you seen any improvements since starting treatment? Sending positive vibes your way.

mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 3/15/2018 7:12 AM (GMT -6)   
BrookieGirl, Yes, how you describe your legs is all too familiar.

Perhaps others here can better address your CD57 question. My understanding is that it is pretty specific to Lyme. For me, I have noticed a very definite relationship between the CD57 level and how I feel. I felt the worst when the number was very low and feel better as it increases.

I have yet to return to "normal" daily activities primarily because of limitations from joint/tendon issues and strength.
Lyme CDC POS
Bartonella POS
Ehrlichia POS
CD57 30, then 12, now 64

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 209
   Posted 3/15/2018 8:30 AM (GMT -6)   
BrookieGirl...Yes balance issues are common with Lyme, and don't let some doctor tell you POTS is not a symptom, ie. so many doctors are not Lyme-literate to know how myriad symptoms can be. about the strange neuropathies, weakening, I could not lift a coffee mug at one point (!), and I'm a grown man with muscles that are somewhat wasting now.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/15/2018 9:01 AM (GMT -6)   
Thank you, mareish. I have read that CD57 is lyme specific too, but then I have also read that it reflects other things as well. Most consistently it seems to be lyme specific in my research... it's funny how much you can start doubting your journey although deep down i know I'm on the right track.

Thank you, borrelioburg. I'm sorry to hear how weak you were - sounds like things might be improving slightly since your worst?! I hope so. I will send healing thoughts your way.

Does anyone out there experience freezing cold toes with lyme/POTS? Mine have seemed to improve a little since starting medication. Also does anyone have experience with Florinef and or Corlanor for POTS treatment? Thanks in advance ❤

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 3/15/2018 10:57 AM (GMT -6)   
No the CD57 isn't specific to lyme. It shows a lowering of immune function.


(Which we often have when dealing with lyme disease)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 3/15/2018 10:57 AM (GMT -6)   
BrookieGirl said...
Thank you, mareish. I have read that CD57 is lyme specific too, but then I have also read that it reflects other things as well. Most consistently it seems to be lyme specific in my research... it's funny how much you can start doubting your journey although deep down i know I'm on the right track.

Thank you, borrelioburg. I'm sorry to hear how weak you were - sounds like things might be improving slightly since your worst?! I hope so. I will send healing thoughts your way.

Does anyone out there experience freezing cold toes with lyme/POTS? Mine have seemed to improve a little since starting medication. Also does anyone have experience with Florinef and or Corlanor for POTS treatment? Thanks in advance ❤


I've never in my life had cold hands or feet...until I got lyme. Now I wear socks to bed.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/15/2018 11:09 AM (GMT -6)   
Me too! And I hated socks in bed before. Could CD57 be linked to MS, or more mold, yeast... immune suppresing diseases. Thanks If you can't tell I need to constantly be reminded I'm on the right path. Crazy.... I know

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 3/15/2018 11:41 AM (GMT -6)   
BrookieGirl said...
Thanks, Girlie!

Do you feel the balance/dizziness/weakness comes from POTS or the co-infections or all?

Did you ever have vision problems? Blurriness, and things moving in your vision?

My hormones are completely low too... Is this part of lyme? I've always been incredibly healthy and active 34 year old female... all of a sudden my progesterone, estrogen, testosterone, dhea and cortisol levels are so low. Off the charts.

Anyone have any idea if this is related?

Or tailbone pain? I guess the sky is the limit on what lyme can cause.


My POTS mainly just shows as raising my heart rate when I stand from sitting. I think I have a mild POTS.

I didn't have vision issues...although when I was on Mepron (previously) and I had the head pressure increase...it seemed to make things kind of fuzzy...heard to describe.

Yes, hormones are affected with lyme. All of mine tanked when lyme hit. Now I was at the age of perimenopause anyway...but it's interesting that I had no symptoms prior...And then bam...lyme hit and never had another period again.

You have tailbone pain? Oh my - did I ever. I don't read much about it but mine was really bad. I thought at first that it was from the fact that I lost so much muscle that my butt muscles weren't protecting my butt anymore.
Mine was strange. It didn't hurt just walking around. And when I sat down...it was still okay...until I stood up again...and then it really hurt.

I had it for over a year. It went away with Bartonella treatment.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/15/2018 11:53 AM (GMT -6)   
Girlie, that's EXACTLY how my tailbone pain is. It's almost like it needs to crack or be adjusted. It's a deep throb pain... and yes, I notice it when I have been resting and need to get back up.

I am 34 and my hormones have always been totally normal and then they tanked... that's reassuring to know it's lyme. I dont know why, but for me, knowing what's causing my problems is a huge part of the mental battle.

I am currently doing A-bart. Hoping that will help... slow and steady...

Thanks for the reply.

thedogma
New Member


Date Joined Mar 2018
Total Posts : 7
   Posted 3/15/2018 12:31 PM (GMT -6)   
Hi BrookieGirl. I remember getting dizzy back in the day, with no good reason. I'd feel off-balance. It scared me, but it wouldn't happen enough for me to worry too much. It worsened with age/stress. This was pre-diagnosis.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/15/2018 12:45 PM (GMT -6)   
Thanks, thedogma. Wishing you healing thoughts. My dizziness is pretty constant - and sometimes debilitating
Always interesting to see how this disease can affect people so differently - yet the same.

Here's a wierd one for anyone, have any of you had small little white bumps where your eyelash roots are. They aren't big or red or inflamed, they are just small almost pimple like white dots. They cause a little irritation, but I have noticed I have gotten these for years, but much more often now that I've started treating lyme and bart. Let me know guys. Thanks in advance!

mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 3/15/2018 12:54 PM (GMT -6)   
Wow, BrookiGirl, that is something I had completely forgotten about. I got those eyelash bumps off and on for a couple of years before Lyme diagnosis and starting antibiotics. They were very irritating and felt like they were scratching my eyeball when I blinked. There was never more than one at a time.

in 2012 one of them became very red and swollen. Doc diagnosed it as something like a stye, I can't remember the name. Since starting antibiotics for Lyme, I have not had another one.
Lyme CDC POS
Bartonella POS
Ehrlichia POS
CD57 30, then 12, now 64

Jasperilla
Regular Member


Date Joined Jan 2015
Total Posts : 220
   Posted 3/15/2018 12:57 PM (GMT -6)   
Hi Brookie,

Yes, I have had many of your same symptoms, although my dizziness isn't usually so bad. It was recently though, for a few days; I couldn't even walk to the bathroom without holding the wall or my husband. Fortunately it went away. My weakness tends to be in my arms and hands, instead of my legs, but it's something I have as well.

I, too, went down the MS road, until I was diagnosed with Lyme. The MS specialist I was seeing at Stanford wanted to watch me, but once I got diagnosed with Lyme, I never went back.

I live in NorCal too, and am wondering if you go to GMA? I went to them for 1.5 years when I first got diagnosed without improvement, but I think it was my specific doctor, so I would urge you to find someone else if you don't see improvement within a reasonable amount of time. I have some friends who also go to that clinic who have improved, so I do think it's doctor-specific.

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/15/2018 1:06 PM (GMT -6)   
Mareish - That's so interesting!!! That's exactly what mine are like. They seem to have slowed down a little the last week or so. Maybe they will go away for me too.

Jasperilla, I think going down the MS road seems to be very common, especially for women with Lyme. I went to 3 neurologist and none felt I had MS, but of course I continued to worry. The lyme diagnosis has helped relieve most of my worry, but I think I had convinced myself of MS, to the point it will just take some time for me to completely let go of it. I did have clear mri's. And normal Neuro exams. I will NEVER go back either.

I am going to GMA. My doctors is CW, a nurse practitioner. Who did you go to? That is very helpful information - thank you!

Who do you see now? Sending healing thoughts!! Xo

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 73
   Posted 3/15/2018 1:07 PM (GMT -6)   
Also Jasperilla, do you have co-infections?
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