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Trouble with gait and falling

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Posted 10/12/2017 1:48 PM (GMT -5)
I was diagnosed with Lyme in 2015. My gait has changed dramatically since then. On a "typical" day, I will walk with my left foot heel first. My right foot though usually strikes the floor with the front ball of my foot first. Also, my left leg is shorter than my right due to muscles. (A symptom of Lyme disease).
Every time my dr. switches up meds for me, my gait significantly improves to no symptoms at all for about 3 weeks and then it is back to the way it was...horrible. When my gait is at its worst, I have to walk down the hallway at work grabbing at walls trying not to fall. Any change in geometry of where I'm walking spells disaster, a curb or small ramp, even walking between cars in a parking lot can be very tricky. Wet surfaces have caused me to fall too. When I do fall, my legs just start shaking and they give out. Sometimes I feel the electricity running up and down my legs. My right leg is worse than my left. Has anybody experienced anything like this?
Posted 10/12/2017 4:31 PM (GMT -5)
Hi sorry you are having these symptoms I have not had those but I am bumping this for more views.
I wish you the best of healing, Jo
Posted 10/12/2017 5:24 PM (GMT -5)
I have had and still have most of the same problems you describe. The ball of my right foot has stopped slapping onto the floor as I walk, though.

Any uneven surface is next to impossible. Even something as slight as going from hard floor to a rug is tricky. I have to be sure to place my whole foot on the rug while the surface transitions otherwise the minor tweek in the foot is excrutiating.

The feeling of being off balance is difficult to deal with. Really sorry you are experiencing it.

Happy to say that my gait has improved slightly in the last month or so, but I have to think about each and every step.
Posted 10/12/2017 6:40 PM (GMT -5)
I have a worsening gait as well. Mine has come on relatively quickly. From perfect walking 4 months ago to can't walk a mile straight now.

I suspect this may be Bartonella.

Sapper, have you been diagnosed with Bartonella?
Posted 10/12/2017 6:42 PM (GMT -5)

mareish said...
I have had and still have most of the same problems you describe. The ball of my right foot has stopped slapping onto the floor as I walk, though.

Any uneven surface is next to impossible. Even something as slight as going from hard floor to a rug is tricky. I have to be sure to place my whole foot on the rug while the surface transitions otherwise the minor tweek in the foot is excrutiating.

The feeling of being off balance is difficult to deal with. Really sorry you are experiencing it.

Happy to say that my gait has improved slightly in the last month or so, but I have to think about each and every step.

Hey, any improvement is good news no matter how big or small. As long as it isn't getting worse.

How are you treating the bart?
Posted 10/12/2017 7:04 PM (GMT -5)
I was on Doxycycline from late March until a couple of months ago. The last Bartonella test I had was in July, and it came back negative. The two previous Bart tests were positive, so I assume it was the Doxy that took care of it.

LLMD ordered another Bart test earlier this week. Hopefully, it too will be negative.
Posted 10/12/2017 7:17 PM (GMT -5)

mareish said...
I was on Doxycycline from late March until a couple of months ago. The last Bartonella test I had was in July, and it came back negative. The two previous Bart tests were positive, so I assume it was the Doxy that took care of it.

LLMD ordered another Bart test earlier this week. Hopefully, it too will be negative.

Hmmm. I attribute my walking issues to being Bartonella. I tested negative, but am just about positive I have it. Since starting treatment, some of my symptoms have subsided, but the walking is getting worse, as is the tinnitus. I have talked to my LLND about this, and he says he will add in Rifampin if my walking has not improved by December.

I called him earlier this week to see if he could prescribe it to me now, but he said it's still too early on original treatment and would like for me to give it some more time. I have been treating just over 2 months... I am an impatient person I suppose.

I would suspect you still have bart even though you tested negative this time. I may be wrong, but I don't believe Doxy alone is enough to get rid of it.
Posted 10/12/2017 7:35 PM (GMT -5)

mareish said...
I was on Doxycycline from late March until a couple of months ago. The last Bartonella test I had was in July, and it came back negative. The two previous Bart tests were positive, so I assume it was the Doxy that took care of it.

LLMD ordered another Bart test earlier this week. Hopefully, it too will be negative.

I don't know of a test that will determine for sure that you have bart in remission.


How long were you sick before starting treatment?

Doxy won't handle a chronic bart infection...
Posted 10/12/2017 8:30 PM (GMT -5)
I've been sick since at least 2012. That is when major symptoms started but I believe it all began well before then. Many of my issues prior to 2012 are gone since starting antibiotics.

Not sure but I think the LLMD has been going easy on treatment because I am so sick. Very low cd57, very high c4a, etc. LLMD told me I would likely not be able to tolerate more aggressive treatment yet.

There has been significant improvement since treatment began.
Posted 10/13/2017 8:59 AM (GMT -5)

mareish said...
I have had and still have most of the same problems you describe. The ball of my right foot has stopped slapping onto the floor as I walk, though.

Any uneven surface is next to impossible. Even something as slight as going from hard floor to a rug is tricky. I have to be sure to place my whole foot on the rug while the surface transitions otherwise the minor tweek in the foot is excrutiating.

The feeling of being off balance is difficult to deal with. Really sorry you are experiencing it.

Happy to say that my gait has improved slightly in the last month or so, but I have to think about each and every step.


What happens when you try to step on a curb? When I try it my legs start shaking and then they give out. It is almost as if my left leg and my right leg are arguing over which one needs to take the step and then they both say well I'm not going! This doesn't happen every time. It only happens during periods of heavy herxing or on very bad days.
Posted 10/13/2017 9:10 AM (GMT -5)

Hoagie said...
I have a worsening gait as well. Mine has come on relatively quickly. From perfect walking 4 months ago to can't walk a mile straight now.

I suspect this may be Bartonella.

Sapper, have you been diagnosed with Bartonella?




I have not been diagnosed with Bartonella. I've never been tested. I did have two parallel red marks on my torso prior to my treatment in 2015. I showed my LLMD a photo of this during my first visit with him. My LLMD uses a questionnaire to determine if a patient has bartonella or babesia. But nowhere on his questionnaire does it list gait/falling problems. My symptoms began in 2012 but I am quite sure I've had it since 1991.
Posted 10/13/2017 10:15 AM (GMT -5)
Sapper, Anything raised ... curb, stair, etc. is very difficult. Can only navigate them with some sort of support. I have noticed, though, that it is easier for me to go up/down a curb if I go sideways.

The way I weave and wobble I'm sure everyone thinks I'm drunk. What a wonderful thought! Don't I wish.
Posted 10/13/2017 1:25 PM (GMT -5)

Hoagie said...


Hmmm. I attribute my walking issues to being Bartonella. I tested negative, but am just about positive I have it. Since starting treatment, some of my symptoms have subsided, but the walking is getting worse, as is the tinnitus. I have talked to my LLND about this, and he says he will add in Rifampin if my walking has not improved by December.

I called him earlier this week to see if he could prescribe it to me now, but he said it's still too early on original treatment and would like for me to give it some more time. I have been treating just over 2 months... I am an impatient person I suppose.

I would suspect you still have bart even though you tested negative this time. I may be wrong, but I don't believe Doxy alone is enough to get rid of it.


Hoagie - I started searching for the best bart testing facility and came up with this paragraph from the Lyme disease research database. I have read that they can do a culture test that will test for several species of bart instead of just one.

New Bartonella Test
Across the country, another diagnostics lab has been working on a new test for Bartonella, and they want you to know about it so you can request it from your doctor. Galaxy Diagnostics in Research Triangle Park, NC, claims it has developed an even more sensitive test for Bartonella, using state-of-the-art molecular detection.

According to their literature, twenty-eight species of Bartonella have been identified so far, and new species are found every year.
Posted 10/13/2017 1:36 PM (GMT -5)

mareish said...
Sapper, Anything raised ... curb, stair, etc. is very difficult. Can only navigate them with some sort of support. I have noticed, though, that it is easier for me to go up/down a curb if I go sideways.

The way I weave and wobble I'm sure everyone thinks I'm drunk. What a wonderful thought! Don't I wish.


Mareish, Wow. It sounds like you have it worse than I do. I guess I am just bull headed though, I will approach a curb with as much speed as I can muster (with my right foot hitting the ball of my foot and never even touching the heel) and I don't know why I expect different results. Is there such a thing as Lyme induced insanity? I also know what you mean when you say that you look drunk. My wife insists that I use a cane even on good days, because she doesn't want me to look like I'm drunk. I am especially embarrassed when I put my 6 year old son in my truck and drive off with him. The new neighbors behind us have a teenage son. I struck up a conversation with him and told him that I had Lyme disease. He said, "I knew there was something wrong with you! Everyone else though you had a learning disability!" WOW.
Posted 10/13/2017 1:43 PM (GMT -5)
Funny!!
Posted 10/14/2017 12:46 PM (GMT -5)
Your symptoms (which I can relate to, to some degree) is definitely neurological. "Neuro-lyme" as they call it. I can feel wonky walking sometimes and sometimes it feels the world is swaying ever so gently from side to side. Yes, like you're drunk or hungover.

Have you tried specific herbs for the central nervous system?

I recently obtained and am taking Pinella/berbur extract, hoping it helps. I'm just a couple days in so it's too early to tell.

Other's may have some other CNS herbal suggestions.

I hate that you are going through this but it's always good to get a reminder that other lymies are experiencing the same thing, and we aren't dealing with some other illness on top of lyme.

Let's continue to properly treat and improve.
Posted 10/14/2017 7:08 PM (GMT -5)
I was having a lot of walking/ gate issues - they've seriously improved ( most days) with diet change & samento, oregano oil , & burbur ( I love Burbur) I also think the MSM, chlorella, & magnesium have helped with these symptoms. And lots of healthy fats!

I also do tons of other supplements & detox ( as we all do) but I really noticed the walking & balance issues easing up in response to the things listed above.

Sounds like your issues are worse than mine were/are, but I definitely had the insane dizziness,having to hold onto one object after another to cross a room ( bet I looked like a baby learning how to walk) - shaking beginning in legs & progressing to whole body ( while I kinda melted into the ground- sometimes blacking out, other times not.)

And the looking / feeling drunk ( a bad drunk!) I'd also have to do stairs or elevation changes sideways ( or on my butt) - and just that awful feeling of placing your feet/legs SO carefully & consciously & still not being able to trust that they would hold you! Ugh!

So grateful I've seen such improvement in these symptoms!!!! I'm sorry you're dealing with them right now, hope you find some relief soon!

Ps. I've tested positive for Lyme & several strains of Bartonella- suspect other co's but not sure. Don't know what caused my balance & walking type issues .... just glad they're going away!
Posted 10/14/2017 7:28 PM (GMT -5)
Casa, Congratulations on the improvement! Hoping I am not far behind you. I have also done the "butt" thing, but only at home. When walking is that difficult, I don't venture far from home.
Posted 10/16/2017 1:06 PM (GMT -5)

dacarte3 said...
Have you tried specific herbs for the central nervous system?

I hate that you are going through this but it's always good to get a reminder that other lymies are experiencing the same thing, and we aren't dealing with some other illness on top of lyme.

Let's continue to properly treat and improve.


I am on straight herbal treatment now for the first time since I was diagnosed since 2015. I was on Zithromax and Alinia for a couple of months then in addition to that I started taking black seed oil for about a week. My symptoms virtually disappeared with black seed oil. So I stopped the ABX. That lasted for about 3 weeks (Just like every other treatment I've been on). My gait became worse again and I fell at work again. Since last Thursday I've been taking black seed oil, curcumin and oil extract of oregano. I am doing much better on this but I fully expect to go South again in three weeks.

And yes, it is nice to know that others share my symptoms. I don't think my PCP is convinced that it is Lyme disease that is causing my symptoms. He thought I had Parkinson's Disease and sent me to a Neurologist. The Neurologist ruled out Parkinson's Disease and then my PCP mentioned some other neurological degenerative disease that there is no cure for. Thank you for coming up on the net to share your experiences.
Posted 10/16/2017 1:20 PM (GMT -5)
Casa - I am very glad that you are doing better. I tested positive for Mycoplasma but have not yet been tested for Bartonella. I read on another post that Claritin will kill Mycoplasma. If this is true, I am all over that stuff!
Posted 10/31/2017 7:09 AM (GMT -5)
Sapper16E please contact me I'm trying to heal my father and my self . He has parkinson syndrom over 10 years and me multiplex sclerosis 15. but I discovered that can be Lyme and coinfections . I'm treating my self and i want to start therapy for my father . If you have time write me a pm I would like to follow your progress. We can beat this crap.never quit. My father is very depressed and down. How did you handle depression?
Posted 10/31/2017 12:35 PM (GMT -5)
Hi BlackPickle - welcome to our forum.

In order for someone to email you, you need to enable your email option through "My Profile" .

I'm sorry that both you and your father have been diagnosed with those diseases.

How is your lyme treatment going so far?


We do encourage our new members to read through the information in the thread : "New to Lyme?..Start Here!"

Do you and your father have LLMD's to treat you...and if not are you looking for one?
Posted 10/31/2017 2:39 PM (GMT -5)
Blackpickle

I am very sorry for yours and your father's suffering. Here is what I would do if I were you. First get a lab test for Lyme Disease from IGeneX Labs in Palo Alto, CA. Your doctor should be able to order a test kit from them. In the meantime please read, "When to Suspect Lyme Disease" by Dr. John Bleiweiss. It is very informative and eye opening. This is the article that convinced me that I had Lyme Disease, Here is a link to it: http://cassia.org/essay.htm
As far as depression goes. I spent an awful lot of time trying to figure out what was wrong with me. I didn't really have time to get depressed. I also pray quite a bit. One more thing you should do is to find yourself a good Lyme Literate Medical Doctor (LLMD)to interpret your results from IGeneX. There are some folks on this forum that can help you I'm sure.
Posted 10/31/2017 6:18 PM (GMT -5)
hi Girlie
I made my email visible, thanx for the advice
i started doing a hulda clark program . i never felt better to be honest. i also removed gluten and tomatoes, my mind is clear and living without pain is such a luxury.
We dont have LLMD - because its freaking expencive. its not covered by the insurance. hmm.. am i looking for LLMD? yes and no. must be a good doctor , and affordable - almost impossible to find . here i go to the doctor and i regret after i get a horror . but any recomendation is welcomed <3


Sapper16E
thank you so much for the reply
I will take a close look on When to Suspect Lyme Disease" by Dr. John Bleiweiss
the thing that opened my eyes was Under our skin. there was a guy with parkinson, and i thought my father might have a chanse. I heard about igenex, frylabs, arminlabs but its overpriced i have so many things to do and not enough money i dont know where to start from. moving in another country is freaking expencive , especially when you try to survive day by day with a lot of pain like crippled.few years ago my doctor told me in the near future i will be in wheelchair .i couldnt accept that i recently got married and i thought life will start for me. instead of being happy i dive into ilness which started more and more progressing. i thought im the only one who can help my self, cant stand this anymore. i have no chanse to find a good doc and i will read and start on my own risk. after i got the therapy i had a lot of herx . couple of times i felt my ribs want to crack out , my skull wants to crack opened, stabbing electrical shock pain all over my body. the pain i had and walking like a crippled in the morning for the past 3 years, all of that is gone. i can work and have minimum pain almost not noticable. something is working good, what i drink or reduce in the food, gluten sugar tomatoes. i will go on, and try everything every protocol and natural suplements. its such a luxury to be pain free. my husband had a hard time with me, i spent most of the last year in bed unable to live a normal life. im glad its over and i hope it will last. how much the test from igenex is costing im curious maybe i send them an email
p.s. i made my email visible, write me sometimes how you are
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