Off balance; Lyme vs. Co Infections

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JessicaMommy
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   Posted 8/11/2015 9:55 AM (GMT -6)   
If you have an off balance feeling, swaying, bobbing, unsteady ground feeling as one of your symptoms.. do you find it is a symptom of your Lyme Disease or a co infection? If co infection, what one?

sayyadina
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   Posted 8/11/2015 10:06 AM (GMT -6)   
When I started Samento, I got really horrible vertigo herxes from Lyme. It also brought out skin crawling, zapping sensations and feverish/fluish episodes too. I stayed at the dose I was at until things got better. When they were really bad, I had to lie on the floor since it felt like the world was moving.
J. knotweed, motherwort, cat's claw, sida, alchornea, cryptolepis, hawthorne, cilantro, anise, nettle, C. senega, C. skullcap, houttuynia, kudzu, stephania, red root, vitamin C, E & D, calcium, Biosil, milk thistle, l-arginine, reduced glutathione, grape seed, curcumin, glucosamine MSM, magnesium citrate, salmon oil, green tea extract, hydroxyB12, methylfolate, B vitamins, CoQ10, selenium, zinc

JessicaMommy
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Date Joined May 2015
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   Posted 8/11/2015 10:14 AM (GMT -6)   
Geeze sayyadina, that sounds horrible. How are you now? Was Samento any good for you?

sunfun
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Date Joined Jul 2015
Total Posts : 284
   Posted 8/11/2015 10:14 AM (GMT -6)   
Constantly feel this way, in fact this was one of my primary symptoms when I started to notice something was wrong. A feeling of being off-balance, not to the point where I need to hold onto something but exactly what you said Jessicamommy, swaying, unsteady ground. I'm not sure if it's related to Lyme or a co-infection though.

JessicaMommy
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Date Joined May 2015
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   Posted 8/11/2015 10:16 AM (GMT -6)   
Sayyadina, It was a spinning feeling you experienced?

needhelp4
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Date Joined Apr 2014
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   Posted 8/11/2015 2:27 PM (GMT -6)   
Yeah, I'm with SunFun on this one, it is so annoying that feeling!! If I feel "grounded or balanced" one or two days in a month, I consider myself lucky. I still get vertigo, but it isn't as bad as it once was back in 2012 or even last year even. I still keep my homeopathic vertigo pills on my night table - just in case. Would love to put them away for good.

CD3764
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Date Joined Sep 2014
Total Posts : 4510
   Posted 8/11/2015 3:07 PM (GMT -6)   
I've had my off-balance moments as you guys describe them and they occurred sporadically throughout my Lyme treatment as part of a herx.

They resurfaced as part of a herx when I started to treat a possible babesia/babesia-like infection.

Unfortunately, there are many overlapping symptoms and that's why diagnosis is difficult. Some LLMD's seem to wait until herxing happens in the hopes of things becoming more clear.
July 14 removed nymph deer tick and started 100mg doxy BID for 3 wks per PCP the next day
Sept 14 met LLMD who clinically dx'd me with Lyme due to Bells Palsy and started me on ABX
Oct 14 Igenex/CDC positive for Lyme
Feb 15 weaned off ABX/started Cowden Protocol and LDN
July 15 transitioning from Cowden to Buhner and trialing babesia herbs
mostly PNS symptoms except when herxing

st0rch
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Date Joined Jun 2015
Total Posts : 63
   Posted 8/11/2015 4:19 PM (GMT -6)   
I'll be standing up speaking to someone, and suddenly I'll feel like I can't stand and almost fall, as if I was spun in a chair 30 times. This typically lasts 3-4 seconds and catches me off guard and I'll have to almost "catch myself". SO yea, this is a very definitive symptom I have. Lately, it's been lasting longer, 10-15 seconds and then I'll have residual dizziness throughout the day. Very frustrating.

Onetime416
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Date Joined Jan 2015
Total Posts : 101
   Posted 8/11/2015 6:12 PM (GMT -6)   
Jessica your symptoms and mine are very very similar.
I currently have the same off balance symptom and it's there everyday. It's gotten slightly better but it's still there. At one point I was to the point where all I wanted to do was sit for fear that I might collapse.
I went to an ENT who laughed me out of his office saying it's not Vertigo. He said I was fine.
I saw a neuro who gave me a test, I forget the name, but it showed that I had an imbalance in my ears. Mixed signals were being sent to brain because one ears signals were stronger than the other.
Description of test-I sat in a chair in complete darkness as he observed my eyes in infrared. He began turning the chair and told me to tell him when it stopped. Simple enough, I passed them all. Then he began turning to the right slowly and asked me to tell him when it stopped. I could never tell when it stopped and for over 90 seconds it felt as though I was still spinning slowly. He then told me that he had stopped spinning the chair a long time ago.
Very odd. I told him I thought I had Lyme disease and he said that everyone has those symptoms. I never went back.

Mysteriousme
Regular Member


Date Joined Jul 2015
Total Posts : 45
   Posted 8/11/2015 7:22 PM (GMT -6)   
So OneTime - the neuro didn't even have some ideas for treatment on your mixed signal issue?

Onetime416
Regular Member


Date Joined Jan 2015
Total Posts : 101
   Posted 8/11/2015 9:14 PM (GMT -6)   
Actually he did. They were small exercises for you eyes. The only problem with this is that the symptoms come and go on their own. I tried the exercises and they didn't do much to help.
I'm almost positive my problem has to do with sporadic inflammation throughout the body. For some reason one symptom goes away only to give rise to another. The dizziness hasn't been that bad lately, but now I have pains in my elbows, back, and terrible headaches. My elbow is slightly swollen.

CD3764
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Date Joined Sep 2014
Total Posts : 4510
   Posted 8/12/2015 6:41 AM (GMT -6)   
Onetime416 said...
For some reason one symptom goes away only to give rise to another


This is one way to confirm a Lyme dx....blech

JessicaMommy
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Date Joined May 2015
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   Posted 8/12/2015 7:21 AM (GMT -6)   
Onetime - I think the test your ENT had you do was an ENG? I did that test as well to rule in or out, an ear disorder causing my off balance problems/dizziness. This test was ordered before I knew I had Lyme. It took 7 months to get in for an appointment to do the test, which ended up being a week after my positive Lyme test. I did the test and everything came back normal. I was extremely off balance that day too. Nothing wrong with my ears. Not sure what the Lyme is affecting to make me off balance.

Keylyme
Regular Member


Date Joined Jun 2015
Total Posts : 77
   Posted 8/12/2015 8:30 PM (GMT -6)   
JessicaMommy,

One of my most prominent symptoms throughout the last two years since being infected have been imbalance. Not a dizziness as if the room were spinning, but more as if while I'm walking I'm leaning to one side and feel that I'm going to eventually fall over, but I don't. I have to stop and hold on to something and regain my balance. Is this similar to what you've experienced? It got better when I started the abx treatment (began a year after infection) but I only stayed on them for less than 3 months and probably transitioned too prematurely to Samento and Banderol.

I'm sorry I can't answer your question as to whether this is from the primary infection or co-infection, but it comes back now and then as a herx in a milder way.

I'll be seeing a new doc next month and am looking forward to his opinions and possibly new testing. If I gain any new knowledge I'll pass it along to you!

Cheers!
**
Tick bites twice, in March and Aug 2013. Self-diagnosed a year later in Sep 2014. Found a Lyme-friendly doc. W. Blot only positive on 1 band 41KD (IGG), Mycoplasma Pneumoniae (IGG, IGM) 1.83. MTHFR, DNA - positive for 2 copies of the A1298c mutation. Most other results normal in 2014. Did <3 months of Amoxicllin, followed by 6 months Banderol and Cat's Claw. Replaced w/ MC-BB-1 drops

Onetime416
Regular Member


Date Joined Jan 2015
Total Posts : 101
   Posted 8/12/2015 9:21 PM (GMT -6)   
Yeah I had the same ENG test Jessica! the thing is I think that test is more specific for vertigo! but don't quote me. My feeling is just like yours, off balance, whoosh, dizzy, and I just feel like sitting. Mal de embarquement (spelling), it's similar to that. Sometimes it feels as though I'm swaying just slightly in my body. Usually it's left to right, but sometimes it's forward and back. It friggin sucks and it won't go away. I'm a teacher/coach and all I want to do is sit down when I feel this way. What else I find odd is that I really don't feel dizzy when I'm driving. ??? Go figure.
Look up disequilibrium between your ears and you'll see symptoms related to memory, headaches, fatigue, brain fog, etc. I thought this is what I have, but how do you explain all the other symptoms I have? LYME.
If it walks like a duck and quacks like a duck....you know the saying

JessicaMommy
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Date Joined May 2015
Total Posts : 507
   Posted 8/13/2015 6:57 AM (GMT -6)   
Onetime,

Yes, Mal de embarquement is similar to how I feel sometimes! And I feel better when I'm driving, too!You wouldn't think so, eh?

Yes, disequilibrium is only a symptom though of a condition. So what I mean is disequilibrium is not a diagnoses, it is a symptom caused by a condition and in our case Lyme Disease. Disequilibrium is one of my worst symptoms :(

Not sure if it is Lyme related or co infection related. Hopefully Lyme and the herbs I'm taking for it will work.

Onetime416
Regular Member


Date Joined Jan 2015
Total Posts : 101
   Posted 8/13/2015 11:02 PM (GMT -6)   
Hey Jessica I forgot to mention. I realized that some days my dizziness was way worse than other days. When I cut out gluten, I noticed that my headaches, fatigue, and especially DIZZINESS had been reduced greatly. It wasn't a cure but it was a huge help.
Jessica your symptoms are very similar to mine if you find something that's working please share with me.
thanks. :)
Today mild headache, slight symptoms, very little dizziness, one of the first days in a long time with no fatigue.
I'm thankful for these days.

sunfun
Regular Member


Date Joined Jul 2015
Total Posts : 284
   Posted 8/14/2015 6:08 PM (GMT -6)   
Onetime: that's exactly how I feel! Like I'm swaying to one side, most of the time is left to right. And I'm absolutely fine while driving, so weird! What a relief to know others feel this way too. I did the vertigo test at an ENT's office, experienced nausea during it which is apparently normal and was told that the results were normal and not severe enough to require surgery or medication. So, I'm left to cope with this and I do feel it is related to my Lyme.

needhelp4
Veteran Member


Date Joined Apr 2014
Total Posts : 648
   Posted 8/16/2015 11:45 AM (GMT -6)   
Yep, the strangest thing is that driving is totally fine - I do not feel that off-balance or that wonkiness, wave like sensations going through the head while driving, but as soon as I am out of the car and on terra firma walking, all that stuff comes back/ happens.....so really strange.....

Onetime416
Regular Member


Date Joined Jan 2015
Total Posts : 101
   Posted 8/16/2015 10:19 PM (GMT -6)   
Ladies and gentlemen, I'm almost sure it is. Mal De Embarquement, or an imbalance in our equilibrium system that involves the ears, eyes, and brain. The neuro/chiropractor showed that my equilibrium is sending messages to my brain that I am slightly swaying to the right. In fact yesterday morning I awoke and sat in bed and felt like my head was very slowly moving to the right. That's one of the reasons that makes us feel off balance. If you look up the symptoms, you'll see headaches, confusion, off, balance, loss of space and time. I experience all that. There are some movement and eye exercises for this.
My deal is that my balance is 100% sometimes then for no friggin reason I get that off balance feeling or jolt sometimes. Doctors first told me it was anxiety. Get the hell outta here with that crap. I really feel that it's just the Lyme going crazy.
Best of Luck to you guys.

JessicaMommy
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Date Joined May 2015
Total Posts : 507
   Posted 8/17/2015 6:47 AM (GMT -6)   
I was told it was just anxiety and there was nothing wrong with me for the last 5 1/2 years at the age of 21. I'll be 27 this month and I finally found out I have Lyme Disease a few months ago with a positive ELISA/Western Blot. I've seen an ENT and have done tests for my ears... all normal. The ENT does not believe there is anything wrong with my inner ears.

Lyme Disease has messed up my balance causing me swaying/bobbing sensations, like I'm in a boat or walking on a dock, light headedness, off balance, hard to walk at times, like im walking on a trampoiline or a foam mat. Going to the grocery store or shopping is usually torture to me as it provokes my symptoms and it make me more dizzy. Hard to walk in small/crowed spaces... having to concentrate/focus makes me more dizzy/off balance.

Onetime416
Regular Member


Date Joined Jan 2015
Total Posts : 101
   Posted 8/17/2015 7:59 AM (GMT -6)   
Jessica, I hear you, I have identical symptoms to yours. We really need to compare notes some time. My symptoms have improved tremendously.
Diet, exercise, supplements, and now abx treatment.
How are headaches, body pains, ear pains, brain fog, etc.?

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 5/17/2018 9:27 PM (GMT -6)   
Bumping this old thread because everyone's post greatly describes what I'm experiencing down to a "T". Even the part about bow driving ironically feels better.

I've experienced this initially way back when. Just like another members said, it was one of the first sign something was very wrong even before I knew I had Lyme.

The symptom went away and stayed away for almost 2 years. Then came roaring back when I relapsed last fall. Now 7 months later it's back and SUPER annoying. It's been going on for about 2 weeks now.

I really need to start keeping a journal to remember how long it lasted in the past and what I did to get rid of it.

I ordered Pinella because I did last time in the fall. I'm hoping it can aid me again as it's a very effective anti-inflammatory for I'm sure this is brain inflammation either from Lyme or candida/yeast.

For others that have experienced this. What has worked for you?
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present
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