Dizziness, off-balance?

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Serfr
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Date Joined Jan 2014
Total Posts : 264
   Posted 4/14/2018 6:09 AM (GMT -6)   
My worst symptom. Anyone else? What does it mean? That the spirochetes are eating my brain? Kinda scared LOL. Just finished a month (so far) of Mimosa Pudica. Thank you.
Tried abx and iv abx for 2 yrs, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Andrographis, Cats Claw, Oil of Oregano
Sx Aug '13-
Extreme fatigue, dizziness, head pressure, 1 seizure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, depression, panic attacks

Mark FW
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Date Joined Dec 2017
Total Posts : 131
   Posted 4/14/2018 7:28 AM (GMT -6)   
Yes it was my fist symptoms but have go away for several months. Started to treat late December.

I suppose as you treat they can pop up again.

However my ENT + found a closteatomo in my inner ear I although they originally saiid it was too small to cause dizzy/verdigo issues, after he was in there he stated it might have contributed.

I myself think the Lyme was picking on a weak area.


Normal ENT will not look for this. Find a nerotoligest. They specialize in inner ear disorders.

Mark FW
Regular Member


Date Joined Dec 2017
Total Posts : 131
   Posted 4/14/2018 7:30 AM (GMT -6)   
cholesteatoma that is.

aphysicalwreck
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Date Joined Sep 2012
Total Posts : 652
   Posted 4/14/2018 7:35 AM (GMT -6)   
Serfr

I don't have any answers but I can tell you that you are not alone. I have very similar symptoms to yours. Off balance, lightheaded feeling, occasionally a dizzy spell, head pressure, head tingling, fatigue, etc etc. I unfortunately can't seem to get better.

Are you in treatment with a LLMD? I see that you have been in treatment for a long time. I can't believe after 2 yrs of abx and all the herbs that you are still sick. It's very discouraging and depressing.

Hopefully somebody else on the board can help you. Have you done any detoxing? Also, did you have Lyme testing done? Do you definitely have Lyme or co?

NicHostetler
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Date Joined Mar 2017
Total Posts : 647
   Posted 4/14/2018 1:18 PM (GMT -6)   
I don’t have any answers either.. I’ve had this for two years now and just can’t find anything to help.

It sometimes is worse than other times.. like right now it’s really bad for me.

I just had an mri that showed mucosal disease so I’m not sure but I think that could be related to mycoplasma. I’m taking lauricidin in hopes that it can knock down the infection..

Please, if you find something that helps, let’s us know. I feel that we may all being dealing with the same issue since our symptoms are so similar.

I did also test positive for bartonella about a months ago. So far the rifampin and Zithromax has done nothing for me.
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 2040
   Posted 4/14/2018 2:00 PM (GMT -6)   
What did the mimosa pudica do to you?

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 4/14/2018 4:52 PM (GMT -6)   
Thanks all, mimosa maybe made me dizzier, dont know. I stopped abx and took the iv out, so i stopped the LLMD. But i generally am doing better than five years ago. Believe me, if i turn the corner somehow i will announce it.
Tried abx and iv abx for 2 yrs, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Andrographis, Cats Claw, Oil of Oregano
Sx Aug '13-
Extreme fatigue, dizziness, head pressure, 1 seizure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, depression, panic attacks

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 146
   Posted 4/15/2018 1:36 AM (GMT -6)   
Youre symptoms are the same as mine were.. including 1 siezure.. I was DX'd with jeuvenile epilepsy by a neurologist that doesnt believe in lyme and prescribed depakote for siezure control/twitching along with a med called serc for the dizzyness.. these have helped massively in regard to these symptoms.

I am sure however all this is lyme related as all my symptoms started at the same time and I have tested positive for lyme
Also epilepsy doesnt explain the rest of my symptoms but the meds do give me relief.. I plan on getting the lyme under control and coming off the rest slowly.

Dahlias
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Date Joined Jun 2017
Total Posts : 518
   Posted 4/15/2018 7:25 AM (GMT -6)   
That was one of my worst symptoms too. It came along with all kinds of sensory disturbances. It's better than it was but still comes and goes. I think mine was related to inflammation somewhere in the nervous system. Have you tried targeting inflammation along with treating in general? My doctor suggested a combination of turmeric/curcumin, omega-3 and vitamin C.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 4/15/2018 3:40 PM (GMT -6)   
Dahlias said...
That was one of my worst symptoms too. It came along with all kinds of sensory disturbances. It's better than it was but still comes and goes. I think mine was related to inflammation somewhere in the nervous system. Have you tried targeting inflammation along with treating in general? My doctor suggested a combination of turmeric/curcumin, omega-3 and vitamin C.


Reading all these posts, especially this one, makes me wonder if the dizzyness is related to excess histamine or mast cells. I've been reading a lot on that lately, as I've been horribly worse for over 3 weeks now with symptoms that are new for me. Dizzyness is one of them, although I only had brief spells of that so far. My 3 week decline started with my last menstrual cycle. I've been having ongoing menstrual signs since and found out today there's a relationship between female sex hormones and mast cell issues.

Here's a link to an article. See if you have any of the other symptoms listed. Since most of you said nothing has affected this symptom, it might be worth considering.

Quercetin and Vit C are supposed to be very helpful, but there's a lot more to it, like food triggers. Also, bacteria in the gut can produce it's own histamine, compounding the problem. Leaky gut can also be a factor.

/www.amymyersmd.com/2017/10/everything-you-need-to-know-about-histamine-intolerance/

10LymeB
Veteran Member


Date Joined Feb 2017
Total Posts : 685
   Posted 4/15/2018 7:07 PM (GMT -6)   
My dizziness is worse when I don't drink enough water. Make sure you're getting at least 64 ounces a day.
*43 yo - Treatment started Nov. 2016 - Bitten by mosquito in Paris 2013
* SIBO (improved with diet)
* Candida (improved with diet and Nystatin)
* Lyme - Babesia - Bartonella
* Hashimoto's (improved with NatureThroid)
* EBV
* HHV6
* Tinea Versicolor (improved with Sporanox)
* IBS (improved with diet and BPC 157)
* Infusio Jan. 2018 (http://www.kristensimental.com/lyme-hub/)

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 4/16/2018 12:25 AM (GMT -6)   
Thanks everyone. I remember when i first got sick 5 years ago, it all started with horrible acid reflux in my throat. Any bit of food was extremely paimful. i was put on PPIs and antacids for weeks, months. That and then 2 yrs of abx probably destroyed my gut. For supplements i take D3, C, Iron, E, Lions Mane, Calcium, Collagen, Fish oil, and a "multivit/mineral 50+". Dizziness is worse upon waking, and getting up from sitting, but subsides a bit through the day, but then the cycle repeats the next day.
Tried abx and iv abx for 2 yrs, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Andrographis, Cats Claw, Oil of Oregano
Sx Aug '13-
Extreme fatigue, dizziness, head pressure, 1 seizure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, depression, panic attacks

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 146
   Posted 4/16/2018 2:47 PM (GMT -6)   
10LymeB said...
My dizziness is worse when I don't drink enough water. Make sure you're getting at least 64 ounces a day.


I have noticed that too, it is definitely worse when I dont drink enough

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 647
   Posted 4/16/2018 8:22 PM (GMT -6)   
Serfr said...
Thanks everyone. I remember when i first got sick 5 years ago, it all started with horrible acid reflux in my throat. Any bit of food was extremely paimful. i was put on PPIs and antacids for weeks, months. That and then 2 yrs of abx probably destroyed my gut. For supplements i take D3, C, Iron, E, Lions Mane, Calcium, Collagen, Fish oil, and a "multivit/mineral 50+". Dizziness is worse upon waking, and getting up from sitting, but subsides a bit through the day, but then the cycle repeats the next day.


Same with me! Mine is horrible during the night if I get up to use the bathroom and then really bad in the morning or when standing up. When I first wake up (or wake up during the night) I literally have to grab walls I can't walk straight. I've had this since the beginning of getting sick.

Please let me know if you find something that clears this up.

aphysicalwreck
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Date Joined Sep 2012
Total Posts : 652
   Posted 4/16/2018 8:39 PM (GMT -6)   
Mine is the worst in the evening hours

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 4/16/2018 10:05 PM (GMT -6)   
Ditto! Loss of balance was one of my first and worst symtpoms. It started with short bouts of dizziness then within a month progressed to constant boat rocking dizziness. I started treatment at the beginning of Feb
My balance improved a little - I still have to focus on each step I take.

Its a frustrating journey, as my balance got bad again 3 days ago. Im hoping it wont get as bad as it was at the beginning of this crazy journey.

Have you looked into POTS? Positional orthostatic tachycardia syndrome? I had a tilt table test and it was positive. It explains why its so much worse after lying down. Maybe something to look into?! From what Ive hesrd POTS is very common in Lyme patients.

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 4/17/2018 6:49 PM (GMT -6)   
Thanks for your replies all. I just remembered I had the tilt test and was prrscribed these long tight white socks, but i havent worn them lately. I called my neuro today because POTS fits my symptoms, reached the receptionist, she said there was nothing about POTS, just that i had "autonomic dysfunction."
Tried abx and iv abx for 2 yrs, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Andrographis, Cats Claw, Oil of Oregano
Sx Aug '13-
Extreme fatigue, dizziness, head pressure, 1 seizure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, depression, panic attacks

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 4/17/2018 8:06 PM (GMT -6)   
POTS is autonomic dysfunction. I think you definitely have POTS. i have known a couple people that had it go away once they recovered from Lyme and co. The socks help, and so do salt tablets, or electrolyte water. I had it so bad at one point I couldn't stand for more than a couple minutes and my body would sway... my vision would bounce...etc. sending healing thoughts. How long have you had autonomic dysfunction?

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 4/17/2018 11:33 PM (GMT -6)   
Thanks BrookieGirl, I hope you feel better too! My dizziness started in oct 2013, from a bump on the head. MRI was neg, but then all these other weird sx started (see sig) I think the bump plus heavy life stress brought all the sx out from hiding. Its weird, I cant walk straight, but at least i can still draw.(but if i overdo it, next day i cant draw a straight line) Heres my latest drawings!
app.sketchclub.com/user/24459794
Tried abx and iv abx for 2 yrs, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Andrographis, Cats Claw, Oil of Oregano
Sx Aug '13-
Extreme fatigue, dizziness, head pressure, 1 seizure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, depression, panic attacks

BrookieGirl
Regular Member


Date Joined Mar 2018
Total Posts : 74
   Posted 4/18/2018 12:20 AM (GMT -6)   
That's a crazy story. I can't believe what can trigger Lyme. I feel mine was stress...

You are an incredibly talented artist! Keep up the good work - I will pray your body becomes more and more capable

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 4/18/2018 5:00 AM (GMT -6)   
Thank you BrookieGirl, praying for you and us all smile
Tried abx and iv abx for 2 yrs, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Andrographis, Cats Claw, Oil of Oregano
Sx Aug '13-
Extreme fatigue, dizziness, head pressure, 1 seizure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, depression, panic attacks

aphysicalwreck
Veteran Member


Date Joined Sep 2012
Total Posts : 652
   Posted 4/18/2018 5:52 AM (GMT -6)   
Beautiful artwork Serfr. You are so talented!!!!!

Serfr
Regular Member


Date Joined Jan 2014
Total Posts : 264
   Posted 4/18/2018 11:31 AM (GMT -6)   
Thank you! Theres a woman on that site with Lyme who's a great artist. (She didnt announce it on her profile)
Tried abx and iv abx for 2 yrs, now trying herbs; Chronic Tonic (bottled) CSA formula, JK, Houttunia, Andrographis, Cats Claw, Oil of Oregano
Sx Aug '13-
Extreme fatigue, dizziness, head pressure, 1 seizure, ringing ears, crawling sensations everywhere, throat pain, groin pain, very cold hands/feet, joint pain, sole pain, body/muscle spasms, teeth/gum pain, constipation, depression, panic attacks

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 5/17/2018 10:33 PM (GMT -6)   
Dahlias said...
That was one of my worst symptoms too. It came along with all kinds of sensory disturbances. It's better than it was but still comes and goes. I think mine was related to inflammation somewhere in the nervous system. Have you tried targeting inflammation along with treating in general? My doctor suggested a combination of turmeric/curcumin, omega-3 and vitamin C.


This is my hunch as well. CNS inflammation. I've taken Pinella in the past that made the symptom go away for several months. Ordered more, hoping for the same success.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 5/17/2018 10:40 PM (GMT -6)   
WalkingbyFaith said...
Dahlias said...
That was one of my worst symptoms too. It came along with all kinds of sensory disturbances. It's better than it was but still comes and goes. I think mine was related to inflammation somewhere in the nervous system. Have you tried targeting inflammation along with treating in general? My doctor suggested a combination of turmeric/curcumin, omega-3 and vitamin C.


Quercetin and Vit C are supposed to be very helpful, but there's a lot more to it, like food triggers. Also, bacteria in the gut can produce it's own histamine, compounding the problem. Leaky gut can also be a factor.

/www.amymyersmd.com/2017/10/everything-you-need-to-know-about-histamine-intolerance/


These are the dots I'm connecting as well. Symptoms get worse after eating. The off balance and POTS gets worse right after eating and then I get a stuffy nose and low grade fever. Very leaky gut/candida/yeast like reaction.

Then that inflammation affects the brain/CNS.
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