Topic: Questions about Lyme/Coinfection related Vertigo
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Ok, so the vertigo that started after one IV dose of 50mg Doxycycline has gotten progressively worse since then (this was a month ago) and has not left.
I'm starting to think the Doxy stirred up the Lyme or a coinfection that is perpetuating this vertigo...
The ENT specialist I saw yesterday was a jerk, won't be going back. But we did learn a few interesting things:
1. My eyes did not do the usual movements when he triggered vertigo with head movements. He was surprised by this (I wasn't).
2. I have no hearing loss associated with the vertigo, and my hearing is normal - yay!
3. However, I perceive a huge difference in sound volume - the same volume tone will sound fine to my right ear, but at least 50% louder to my left ear.
4. The vertigo is worse when triggered by looking or turning my head to the left vs. looking/turning to the right.
I am constantly feeling like I'm on a moving raft floating on water (24/7), but the spinning comes and goes depending on head/eye movements, and the spinning is worse in the morning.
And once vertigo starts, it takes hours for it to settle down.
So has anyone else experienced anything like this stuff?
Any thoughts on whether this vertigo and floating sensation could be Babesia or Protomyxzoa Rheumatica, or whether this could be more from Lyme / Bartonella mischief?
BTW, I've tried to read the vestibular/vertigo thread, but with my vertigo/floating sensation, reading and making sense of a long thread like that is nearly impossible for me right now...
And I'd love to ask an LLMD but cannot afford to right now (no income at the moment).
Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Is your liver support comprehensive? As this started with an Rx, the Rx ototoxicity (or a herx or combination of both) seem to be clues. More specific liver support MAY help.
I can't really do much now other than post some links here with lots of things to consider:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
- Ototoxic Drug issues and what can help -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "Eye movements" are off, you say. That is NYSTAGMUS, caused by ototoxicity (and lyme toxicity to the liver, too). Nystagmus is discussed in the tinnitus thread above. It's very common to go along with inner ear condition.
"worse when turning head or moving eyes" also shows vestibular (inner ear) involvement (from ototoxic drug &/or ototoxicity / liver load from lyme, itself).
" a moving raft floating on water" -- also inner ear related. It could be a particular kind of vertigo (BPV) and that a particular PT exercise would help -- however since this started with that first IV doxy, dose, it seems that is the main trigger here, the ototoxicity.
I've had all this so you will see all I researched or tried in that thread above.
MAGNESIUM is the best helper.
Avoid all fluorescent lights. All. Everywhere. More detail about all this vestibular stuff in the EAR THREAD above, too.
This can get better still, for you, lying at a 30 degree angle from hips / torso, not from neck with head higher than feet is the calmest position for the inner ear. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I do not have nystagmus. That is what I was trying to say - there is no observable nystagmus when I am experiencing the spinning.
I'm sorry, I'm not able to read the ear thread. I tried...it is just too long and I cannot get through even part of it.
Yes, I do have liver stress from being on TPN right now...I don't know what to do until I can take things in orally again...and who knows when that'll be...last time, it took a year for me to be able to eat again.
Are full-spectrum fluorescent lights ok? We have one full-spectrum fluorescent light in our kitchen, the rest are incandescent or LED's.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Oh boy...lying down is worse for the spinning. I'm best (have minimal or no spinning) if I'm standing up walking around or riding in a car!!!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Gosh Razzle, I relate.
I've been feeling like I'm on a carnival ride and can't get off, even when I'm lying down.
I agree, laying down can feel awful, like part of me knows I should be feeling still but my body feels like it's rocking and spinning.
I see my new LLMD next week. This will be a BIG topic for me.
Visual tracking is way off. If I try to follow fast motion like on a TV screen, it makes me feel disoriented.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Razzle, sounds like Bartonella to me. Any pressure in the head? Light sensitivity? Cognitive issues?
Posts: 57 | From CT | Registered: Jan 2005
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Thanks Judie...
Ticktox,
Didn't know Bart could cause vertigo...good to know!
I don't have pressure in my head.
But my eyes are extremely sensitive to light, and I do have brain fog, slow information processing, and some other stuff (short term memory issues, mixing up letters in words when writing/typing, combining two words when speaking/writing, using wrong words when speaking, etc.)...
And I do have some classic Bart symptoms also, including the pain on the bottom of my feet and the sore shinbones...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
For your liver, since you can't take orals,
How about a castor oil pack? I do these, and they are worthy.
Hang in there--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Surprise,
Thanks for the idea...somehow, I forgot about those!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Razzle, I don't know if this helps but my vertigo symptoms went away with parasite treatment. I remember when I first had vertigo, I also had mucus, and another time, inner ear fluid. Mucus is a symptom of parasites.
Prior to me taking parasite herbs and meds, the vertigo would occasionally return. Not any more though (it's gone).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Vertigo can definitely be a Bart symptom and given your many other Bart symptoms Razzle, I would suspect that your vertigo is from the Bart. The fact that it coincided with the IV Doxy also makes sense if its Bart. I think you are on the right track in thinking the Doxy stirred up the coinfection. Bart is often more difficult to treat than Lyme and can really get in the way of progress in treating Lyme if not dealt with. Too often LLMDs focus on Lyme and patients end up spinning their wheels because either Bart or Babs or both have not been sufficiently dealt with.
Posts: 57 | From CT | Registered: Jan 2005
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I have started using the iMRS 2000 (PEMF mat) and am having to go incredibly slowly because of what feels like Herxes/detox reactions, one of which has been really intense vertigo for several days at a stretch.
I have had vertigo, also bad 'steering' right from the beginning, with at times that raft-on -water feeling and it has never been so intense as in reaction to the mat sessions. My hearing has not seemed to be affected though.
Apart from the liver support, it may be worth trying an antifungal, if you are not already doing so.
Posts: 1647 | From UK | Registered: Nov 2008
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Razzle
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Member # 30398
posted
Any suggestions what I can take for Bart that is available in an IV or IM or topical form?
I can't do Cipro - it causes wayyyy too much tendon pain (rendering me unable to use my hands/wrists at all for anything).
And Azithromycin caused my heart to race uncontrollably (though heart scans/tests are all 100% normal)...and may have set the stage for the Doxy-induced vertigo...
Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Rifampin is the drug most used to treat Bart. If you don't have a sulfa allergy you might try Bactrim (aka Septra). It tends to be a less harsh, more gradual treatment which may allow you to tolerate it more easily. You could also add Minocycline (50-100mg). It is such a good penetrator and so can get to the brain as well as deeper in the bones where Bart likes to hang out. Good luck whatever you do. Just be persistent.
Posts: 57 | From CT | Registered: Jan 2005
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ukcarry
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Member # 18147
posted
Rifampin needs another antibacterial agent, as it is particularly susceptible to resistance.
It is also tolerated poorly by some people, myself included. Take care with it; not good to stop and start it....not sure why.
Posts: 1647 | From UK | Registered: Nov 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Thanks everyone, for your replies - even about things like parasites or yeast.
Wish I could be taking the usual stuff I do (probiotics, etc.) but it's not possible with a non-functional stomach (which is also probably from Lyme/Bart & who knows what else).
I am very allergic to sulfa, unfortunately...
I think I'm going to have to wait on Bart treatment until I have a way (financially) to see an LLMD again...
The only thing I know that may help some is the clove essential oil, but I don't know how well it would work topically...and I don't want to stir up more vertigo in a herx with my liver under so much stress at this point.
I have lots to discuss with my regular doctor (yes, he's treated others with Chronic Lyme, but none as complex as me)...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I sympathise, Razzle. Could you tolerate a castor oil pack over the liver maybe and a couple of drops of clove oil in castor oil , almond oil or grapeseed oil as a gentle massage?
[ 10-28-2013, 05:34 PM: Message edited by: ukcarry ]
Posts: 1647 | From UK | Registered: Nov 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yeah, I need to try the castor oil pack. Can't do almond or grapeseed oil, but can do avocado oil...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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ukcarry
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posted
Good luck. Hope you feel better.
Posts: 1647 | From UK | Registered: Nov 2008
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Thanks
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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